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2
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
THE APPLICATION OF TECHNOLOGY
TO HANDICAPPING CONDITIONS AND
FOR HANDICAPPED INDIVIDUALS
Awareness Paper Prepared By
William R. Ayers, M.D.
Assistant Dean for Curriculum
Georgetown University
School of Medicine
Washington, D.C.
Pub. WHC -- 22
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following person who contributed significantly to this document:
Jerry D. Parham, Ph. D.
Director of Training
Research and Training Center in Mental Retardation
Texas Tech University
Lubbock, Texas 79409
This Awareness Paper was prepared by a physician to serve as one resource for
discussions leading to solutions of problems facing all individuals with mental and
physical handicaps. This Paper was not intended to be all-inclusive, but was designed
to stimulate discussions.
TABLE OF CONTENTS
Page
Introduction
1
Parameters of the Paper
1
Definitions
1
Delineation of the Problems
1
Historical Perspectives
1
Discussion of Problems
3
State of the Art
4
Technology-Its Generic Divisions
4
Health Services Delivery-A Conceptual Framework
5
Needs of the Handicapped
6
Strategy for Technologic Assessment
6
Examples of Existing Technology
7
Nontechnology
7
Half Way Technology
9
Decisive Technology
9
Promising Technology
10
The Future
11
Conclusions and Recommendations
11
Bibliography
12
Attachment
13
INTRODUCTION
and Welfare, in terms of the person. Thus, a
HANDICAPPED PERSON is one who because
Parameters of the Paper
of a physical or mental disability is at a
The focus in this paper is the boundary
disadvantage in functioning in one or more
between technology and the handicapped. The
major life activities. A major life activity is a
emphasis is neither technology nor handicapped
relative definition. It is assumed that such
individuals; neither is it applied technology nor
activities are those that can reasonably be
handicapping conditions. The use of the word
expected of a nonhandicapped person. Handi-
"boundaries" is a deliberate one. "Interface,"
cap, impairment, and disability are sometimes
more commonly used, by definition in the
used interchangeably.1 There are degrees of
metallurgic sciences is an impregnable division.
handicapping conditions: mild, moderate and
Technology and the handicapped already have
severe, based on functional limitations. A list of
too many divisions that seem to be impregnable.
handicapping conditions based on diagnostic
Rational discussion of technology and the
categories is appended as Attachment A. The list
handicapped demands the setting of limiting
is selective and includes those conditions that
parameters. Both fields are so complex and in
have a high prevalance rate or have received
such a state of dynamic change that initial
national recognition usually through the efforts
subdivision of the topics and exclusion of some
of the public sector.
potentially contributory but non-essential ele-
Many persons have several handicaps and are
ments are required.
usually referred to as MULTIPLY HANDI-
In order to generate a national awareness of
CAPPED. For the purpose of a review of technol-
the problems faced by individuals with physical
ogy applied to the handicapped, it is important to
or mental handicaps from the viewpoint of
realize that there are no national incidence/preva-
applied technology, we will review the philoso-
lence studies of the multiply handicapped. How-
phy of technologic development and the process
ever, the number of individuals with multiple
of technology transfer using appropriate generic
handicaps is increasing because advances in
frameworks of reference and specific selected
medical science save the lives of high risk
case studies. In order to stimulate a national
individuals, accident victims and disease victims
assessment of technologic solutions to the prob-
who would have once died from these maladies.
lems faced by individuals with physical or
An indication of the prevalence of multiply
mental handicaps we will propose a scheme for
handicapped persons can be seen in Figure 1.
technologic assessment that views applied tech-
The chronic causes of disability in non-institu-
nology as a production function. Peculiar to
tionalized persons are seen in Figure 2 and in
such a maneuver is the ability to view techno-
institutionalized persons in Figure 3
logic applications as both substitutive and addi-
In its broadest sense, TECHNOLOGY means
tive to the other energies brought to bear on the
the systematic application of scientific or other
total solution to the problems faced by the
organized knowledge to practical tasks. 3 Its
handicapped. The conclusions will be stated in a
most important consequence is in forcing the
manner to aid in the development of recom-
division and subdivision of any such task into its
mendations for legislative and administrative
component parts. Thus and only thus, can orga-
actions that will allow individuals with handi-
nized knowledge be brought to bear on change.
caps to live their lives independently, with
Failure to appreciate subtleties in the defini-
dignity, and with integration into community
tions cited and their implementation within our
life. No attempt will be made to list all
complex cultural and socioeconomic system has
technologic applications to all facets of the lives
led to unsolved problems for technologists and
of the handicapped; such is simply outside the
the handicapped alike.
scope of the paper.
DELINEATION OF THE PROBLEMS
Definitions
Historical Perspectives for
Technologic Application
There are widespread differences regarding
the definition of "handicap." HANDICAP has
A. Legislative Background
been defined by the Office for Handicapped
1. The Developmental Disabilities Services
Individuals, Department of Health, Education
and Facilities Construction Act of 1970 (PL
1
Additional Handicaps of Any Kind
No Other
Partial
Severe
12%
Function
Handicap
Handicap
Handicap
Description of Severe Handicap
Ambulation
57.8
32.4
9.9
Able to take few steps with help
or totally unable to walk
Upper limbs,
57.5
34.2
8.2
Unable to hold large objects or
gross motor control
88%
complete lack of muscle control
Upper limbs,
56.1
34.9
9.0
Minimal use of hands, cannot
fine motor control
use eating utensils
Speech
45.1
33.4
21.5
Can possibly communicate needs or
wants, but uses few or no words
Free of Additional Problems
Hearing
85.0
11.5
3.4
Functionally or totally deaf,
With at Least One Additionally
hearing aid partial or no help
Vision
Handicapping Problem
73.3
20.9
5.9
Minimally sighted (uncorrectable)
or legally blind
Seizures
82.3
15.1
Additional Severe Handicaps
2.7
Severe seizures partially
(epilepsy, convulsions)
controlled or uncontrollable
Behavior,
58.1
35.7
6.3
Adjustment not possible in home
emotional
environment, abnormal behavior,
35%
disorders
dangerous to self or others
Toilet
77.5
10.2
12.3
Dependent on others, slightly
training
toilet trained or not trained
65%
Source: J. W. Conroy and K. E. Derr,
Survey and Analysis of the Habilita-
tion Status of the Mentally Retarded
With at Least One Severe
with Associated Handicapping Conditions
Additional Handicap
(Washington, D. C.: U.S. HEW, SRS,
1971).
Free of Severe Additional Problems
Figure 1. Prevalence of Associated Functional Handicaps in
Mentally Retarded Persons by Percent
Institution
Number
Percent
Heart conditions
Total
Arthritis and rheumatism
460,000
100.0
Old age
Psychiatric hospital or ward
299,000
65.0
Institution for mentally retarded
Mental and nervous conditions
107,000
23.2
Chronic disease facility
54,000
11.7
Cerebral vascular diseases
Emphysema
"Chronic disease" facilities include all' long-
term care hospitals and wards and all schools or
Impairments of lower extremities and hips
homes other than psychiatric institutions or
Paralysis, complete and partial
facilities for the mentally retarded. The per-
Impairments of back or spine
centage distribution of disabled adults among
the types of institutions included in this classifi-
Other circulatory diseases
cation is shown below:
Visual impairments
Chronic disease (unspecified)
13.5
Tuberculosis
27.4
Hypertension (without heart involvement)
General
17.1
0
5
10
15
20
Rehabilitation
11.1
PERCENT
Homes and schools for the blind
or deaf
7.3
Source: Adapted from Executive
Extended care wards and
Office of the President,
Office of Management and
geriatric hospitals
23.4
Budget, Social Indicators
1973 (Washington, D.C.:
U.S. GPO, 1973), p. 17.
Source: Adapted from U.S. HEW, SSA, "Demographic Charac-
teristics of Institutionalized Adults," Social Security Survey of
Institutionalized Adults: 1967, Report No. 1, P. Frolich Wash-
Figure 2. All Noninstitutional Persons Unable to Carry on Major
ington, D.C.: Office of Research and Statistics, 1971), p. 2.
Activities, with Percent Due to Main Cause Chronic Condition,
Two Year Average 1969-70
Figure 3. Institutionalized Adults, Age 18-64, 1967
2
91-517) significantly expanded the scope and
science to support the managerial decision proc-
purpose of the Mental Retardation Facilities
esses required,⁷ by a scarcity of people trained
Construction Act of 1963 (PL 88-164) by
and educated in the application of engineering
providing a combined formula and project grant
principles to the handicapped,⁸ and by the high
program to states both for construction of
cost of technical failures induced by non-
facilities and the provision of services to persons
perception of real needs.⁹ Several investigators
with developmental disabilities.
have commented that the process of applying
2. The Rehabilitation Act of 1973 (PL
technology developed in other settings to the
93-112) and Rehabilitation Amendments of
settings of health care includes not only the
1974 (PL 93-516) improved and expanded the
design of devices, but also the development of
existing legislation to ensure greater flexibility in
techniques for problem definition and the man-
state administration of vocational rehabilitation
agement of programs leading to solutions. 10-12
services, established a new program for construc-
Boundaries exist between society, the handi-
tion of rehabilitation facilities including assist-
capped, technology and medicine. Failure to
ance for planning, expansion, renovation and
bring elements across these boundaries has led to
purchase of initial equipment, recodified the
many problems that negate successful techno-
nation's oldest grant-in-aid program and placed
logic intervention in the field of handicapping
emphasis on expanding services to the more
conditions.
severely handicapped and expanded the vendor
Despite the admonitions of Lewis Thomas, 13
program for the blind.
most people still refer to all expenditures on
3. In 1975 the following public laws were
health and the absence of health as the Health
enacted:
Industry. This unfortunate lumping has led to
PL 94-103, The Developmental Disabilities
many problems. Some are conceptual: Health
Assistance and Bill of Rights Act.
Care has become the new name for clinical
PL 94-142 The Education of all Handicapped
medicine. Others are mechanistic: Health Care
Children Act.
Delivery has become the new name for the
4. A vast uncodified body of state law exists
processes by which clinical medicine is prac-
usually targeted for the provision of services to
ticed. However, the "crisis in health" (that
specific groups of handicapped people.
includes services to the handicapped) is neither
conceptual nor mechanistic; it is financial. The
B. Scope of the Problem
Health Industry is a rapidly escalating contrib-
There are more than seven million children
utor to the Gross National Product. 14 The
and at least 28 million adults in America with
Social Security Administration, which records
physical and mental handicaps.⁴ Individuals
the national health expenditure, reported that
with handicaps are all too often excluded from
the nation's health bill increased from $12
schools and educational programs, barred from
billion in 1950 to $94 billion in fiscal
employment or are underemployed because of
1973. During this period, the portion of
archaic attitudes and laws, denied access to
the Gross National Product spent on health rose
transportation, buildings, and housing because
from 4.6% in 1950 to 7.7% in 1973 (see Figure 4).
of architectural barriers and lack of planning,
As noted by Burger¹ 17 one of the first issues
and are discriminated against by public laws
raised for public examination because of the
which frequently exclude individuals with handi-
pressures of cost is the relation between invest-
caps or fail to establish appropriate enforcement
ments made nationally for health and the
mechanisms. Not the least of the problems is the
resulting "purchased health." It has generally
fact that the American people are simply un-
been assumed that the products of basic and
familiar with and insensitive to difficulties con-
applied research are translated into the tech-
fronted by individuals with handicaps.⁵
nologies that eventually become the arma-
Discussion of Problems
mentarium of those engaged in the process of
bringing about change. In the process of ap-
The development of new technology and the
plying technology to the cure or containment of
adaptation of existing technology for the handi-
handicapping conditions and for the betterment
capped have been hampered in the past in
of handicapped individuals, the hypothesis may
inattention to the definition of discrete, project
not be a valid one. The problem may be that
oriented tasks, 6 by the lack of a suitable basic
technology has only been applied partially to
3
$75.0
In the latter sequence the most essential
$67.8
element in the application of the fruits of
research, especially costly research, is a mech-
anism for transforming knowledge into the
action that produces change. To be specific, in
the area of technology applied to the problems
$38.9
Percent
7.4%
of the handicapped, the most essential element is
of GNP
7.1%
a mechanism for the transfer of Technology.
$25.9
$17.3
5.9%
State of the Art
$12.0
5.2%
4.6%
4.6%
Technology, even technology applied to the
1955
1965
1970
needs of the handicapped, is too broad to be
Fiscal
1950
1960
1971
year
detailed here. Moreover, no one can predict
Figure 4. National Health Expenditures (per billion dollars) and
what environmental change, what genetic muta-
Percent of Gross National Product (GNP) for Selected Fiscal
tion or what new infective agent might drasti-
Years from 1950 to 1971. Data from Rice and Cooper (15).
cally alter the needs of the handicapped or lead
to new handicapping conditions. What can be
solutions for the handicapped. Much of the
accomplished is a generic division and subdivi-
discussion about the utilization of technology
sion of technology into its component parts, the
for the solution of societal problems, exempli-
drawing of conceptual frameworks of reference
fied by the problems of the handicapped, has
for the description of health services delivery
been concerned with the needs of research, with
and for the services needed by the handicapped.
the relative weight given "basic research" as
And finally a strategy for technologic assessment
compared with "applied research" and not with
is necessary to answer the questions, "Where are
the administrative techniques used to conduct
we (with technologic applications)?" "How do
and manage that utilization. As pointed out by
we know when we are there?" and "Where do
Gershinowitz,
18
"
very little is said about the
we go from here"?
processes involved in the application of research,
about the mechanisms by which successful
A. Technology-Its Generic Divisions
research could be used for the solution of major
Technology is synonymous neither with in-
social problems. 11 The usual sequence of basic
strumentation nor technique though it en-
research, applied research, development, and use
compasses both. The applications of technology
of research products seems an obvious logical
may well take the form of an instrument or a
and chronological order, especially to research
technique, but should not be confused with
workers. However, in those areas in which the
them. Technology is a process. In the area of
application of research has been most success-
aids to the handicapped, gadgets and gimmicks
fully accomplished, the reverse order has been
have too often been substituted for technology.
prevalent. Thus, if one's primary concern is with
In the view of Thomas¹ there are three
the use of knowledge to produce change, then
levels of technology that ought to be distin-
the order should be: 1) The use of existing
guished. The first is termed "nontechnology",
knowledge to produce the desired change (i.e.,
impossible to measure in terms of its capacity to
to allow individuals with handicaps to live their
alter either the natural course of handicapping
lives independently, with dignity, and with
conditions or their outcome. It is what is meant
integration into community life); 2) When exist-
by the phrases "caring for" and "standing by."
ing knowledge is incomplete or insufficient,
It is indispensible. It is valued highly by the
applied research to find the missing knowledge;
providers of services for the handicapped as well
3) In those areas in which lack of fundamental
as the handicapped themselves. It is sometimes
understanding limits the scope of applied re-
called "supportive therapy."
search, basic research for understanding the
It is what physicians used to be engaged in at
nature of the needs; 4) And for those areas
the bedside of individuals with diphtheria, men-
without even an understanding of the nature of
ingitis, poliomyelitis, lobar pneumonia and other
the needs, basic research without regard to any
infectious diseases that have now come under
possible area of application.
control.
4
It is what professionals must do now for
interventions since the causative organisms in
patients with intractable cancer, severe arthritic
each case were not recognized until well after
disabilities, multiple sclerosis, cerebral vascular
the trends were established (see Figures 5 and
accidents, and various mental and developmental
6). In these cases, environmental factors were
disorders.
thought to have played an important role. With
At the next level up is a kind of technology
respect to technologic intervention in other
termed "halfway technology" by Thomas. 19 This
disabling disorders, especially genetic disorders,
represents the kinds of things that must be done
the likelihood of true breakthroughs of decisive
after the fact of disability in efforts to compen-
technology is thought to be high.
sate for the incapacitating effects of certain
disorders whose course one is unable to do very
B. Health Services Delivery-A Conceptual
much about most likely because of our state of
Framework
ignorance regarding the fundamental disabling
Many conceptual frameworks for the descrip-
processes.
tion of health services delivery in this country
This level of technology is, by its nature, at
have been proposed and discussed. 21-23 Com-
the same time highly sophisticated and pro-
mon to all is the realization that managerial and
foundly primitive. The outstanding examples in
recent years are the transplantations of hearts,
4000
kidneys, and other organs and the equally
spectacular fabrication of artificial organs and
3500
limbs. It is the wonderfully technical world of
3000
TUBERCLE BACILLUS
sensors and transducers that stimulate or simulate
IDENTIFIED
the body functions. It is the kind of technology
that in the public mind and in the media is
viewed as a breakthrough rather than as a
DEATH RATE PER MILLION
2500
2000
1500
stopgap.
1000
This is the kind of technology, technique or
CHEMOTHERAPY
instrumentation that one must use until there is
500
a genuine understanding of the basic mech-
1838
1850
1860
1870
1880
1890
1900
1920
1930
1950
anisms involved in disease. It is characteristic of
1910
1940
1960
YEAR
this kind of technology that it costs an enor-
mous amount of money and requires a continu-
Figure 5. Mean annual death rate from pulmonary tuberculosis
ing expansion of facilities. It requires an increas-
in England and Wales from 1838 to 1962. From McKeown and
Lowe (20). Cited in Ref. 17.
ing pool of specialized personnel to operate it.
The only thing that can move technology away
from this level is new information.
The third type of technology is the kind that
2500
is so effective that it is taken for granted and
attracts little public notice. This is the genuinely
2000
decisive technology of modern science. This is
the really high technology of medicine based on
STREPTOCOCCUS IDENTIFIED
the result of a basic understanding of disease
relatively inexpensive and relatively easy to
deliver. Most important as regards a review of
DEATH RATE MILLION)
1500
mechanisms. When it becomes available, it is
1000
applied technology to the institution of the full
rights of citizenship to the handicapped is the
500
SULPHONAMIDES
realization that this type of technology, the
ANTIBIOTICS
decisive technology, need not necessarily be
medical at all. The striking and consistent
1851
1870
1880
1890
1900
1910
1920
1930
1940
1950
1960
declines in death rates from some infectious
YEAR
diseases (e.g., tuberculosis and streptococcal
Figure 6. Mean annual death rate in children less than 15 years
diseases) known to cause disabling conditions,
old from scarlet fever in England and Wales from 1870 to 1960.
could not be attributed to specific therapeutic
McKeown and Lowe (20). Cited in Ref. 17.
5
operational frameworks for the delivery system
average number of days lost to illness, the
must be developed to allocate resources ration-
expected earnings stream of the population
ally to the overall delivery of services to the
suitably defined. Regardless of the measure of
handicapped and to measure the impact of
output, one might imagine a "community
services offered. This theoretical description
health" function that expresses the "level of
must have counterparts in actuality so that the
health" output in terms of the levels of inputs,
impact of developed and implemented tech-
such as number of doctors, number of hospitals,
nology can be measured. Accordingly, the con-
etc. Such a function is referred to by the
ceptualized system must be characterized ac-
economists as a production function and by the
cording to its inputs, medium to be transformed
engineer as a transfer function. We shall employ
and its outputs. One conceptual system is shown
the former term.
in Figure 7.
Intuitively, we should expect our "com-
munity health" production function to have
C. Needs of the Handicapped
several obvious properties:
If the goal of full citizenship for handicapped
individuals is to be achieved, service delivery
An increase in the level of any input should
systems must be structured according to a
produce an increase in the level of output. If we
conceptual framework not unlike stepping
increase the number of diagnostic services in a
stones²⁴ (see Figure 8).
community, we' expect community health to
increase, measured by any available standard.
D. Strategy for Technology Assessment-The
Subsequent increases in the level of any
Missing Element
one input, all other inputs being held at a
For each of the services or needs listed in the
constant level, should produce ever smaller
conceptual frameworks, evaluation is required.
absolute increases in the level of output. The
Since each effort is different and at a different
reasons is that inputs may complement one
level of sophistication, only a general evaluation
another. For example, the marginal benefit from
scheme will be described.
adding additional kinds of occupational therapy
The system of delivering health care service
service while holding the number of occupa-
may be viewed as the employment of inputs,
tional therapists constant-and thus, in effect,
such as doctors, nurses, outpatient clinics, hos-
spreading them thinner-will decrease for each
pitals, population nutritional levels, environ-
service added.
mental quality, and other factors, producing an
The marginal increase in output resulting
output-the "level of health" or "level of habili-
from an increase in any one input will be greater
tation."
if other inputs are also increased. This also
There is much controversy in the economic
results from the complementary property; i.e.,
and public health literature about the proper
increases in the number of services will have a
measure of "level of health. 25,26 Some of the
greater effect if the number of doctors, or more
commonly used definitions of this measure are
appropriately, other personnel, is increased at
the percentage of people sick at any time, the
the same time.
INPUT
MEDIUM
OUTPUTS
People
Organizational
Services for
Structure of
the Handicapped
Knowledge and
Medical Care
Skills
Quality
Financing
Quantity
Facilities and
Mechanisms
Availability
Equipment
Nature
Educational
Cost
Dollars
Networks
Available
Figure 7. Health Services Delivery-Conceptual Framework
6
INDEPENDENCE
Leisure Needs -
Recreation Services
Residential Needs - Housing Services
Economic Needs Economic Support Services
Activity Needs - Education and Rehabilitation Serviços
Social Needs - through All Services and Special Programs
Physical Needs - Health Services
Mobility Needs - Transportation Services
DEPENDENCE
Source: Adapted from M. Santamour and K. Rose,
If the goal of full citizenship for handicapped
"Defining the Problem of Mental Retarda-
individuals is to be achieved, service delivery
tion: A Functional Model" (Paper presented
systems must be structured as stepping stones
at Region X AAMD Meeting, 1969.)
to facilitate as much as possible the movement
from dependence to independence.
Figure 8. Needs and Services for the Handicapped-A Conceptual Framework
Many different combinations of inputs can
which a given output can be achieved.
produce the same level of output. In some sense,
Determination of the returns to scale, or
inputs to community health substitute for each
the multiplicative effect on output measure
other; that is, a given level of health might be
caused by proportionate changes in the level of
produced by alternative combinations of nurses
inputs.
and doctors, therapists and clinics, etc.
There have been many examples of the
The production function concepts offer three
successful application of production function
major advantages in an economic analysis of
models to problems in industry and govern-
technologic intervention.
ment. 27,28 Without a clear picture of the
Determination of the substitution and com-
generic types of technology available, the system
plementary properties of the inputs to a produc-
and settings to which technology is to be applied
tion process; production functions enabled one,
and a scheme for assessment, the problems at
in the context of community health care, to
the boundaries of technology and the needs of
determine how the various inputs substitute for
the handicapped will not be crossed.
each other (nurses for doctors, paramedical
people for nurses, and so on) and complement
one another (doctors working in hospitals,
EXAMPLES OF EXISTING TECHNOLOGY
nurses working for doctors, etc.) in the produc-
APPLIED TO SOME NEEDS OF THE
tion of any level of output.
HANDICAPPED
Determination of the optimum combi-
nation of categories of input resources under a
An Example of Thomas' "Nontechnology"
given constraint; when combined with a budget
constraint, the production function permits de-
The private sector, represented by countless
termination of the input resource mix that
service organizations, voluntary health agencies
yields the greatest output for a given cost
and just plain people has achieved most success
constraint, or, alternatively, the lower cost at
in the area of "nontechnology" technology.
7
Sympathy, empathy and patience are not quan-
THE LONG SHADOWS OF ACCIDENTS
tifiable outputs of any assessment program yet
they are real.
AT WORK
In the area of Nontechnologies, empirical
studies related to helping relationships or be-
IN AUTOMOBILES
havior change seem to bear out at least two
general conclusions. First of all, when indices of
congruents, positve regard, and empathy are
combined as summary descriptions of clinician
style, positive change occurs in the handi-
73BILLION
cappped individual, positive change occurs when
the index is high, and negative change occurs
DEAD
DISABLED
DOLLARS
when it is low (Bergan, 1969). In other words,
SOURCE NATIONAL SAFETY COUNCIL
there is general agreement, even among many
Figure 9
non-Rogerians, as to the benefit of the warm,
understanding and integrated relationship, al-
though some question exists as to whether these
The public sector, except for Federal institu-
conditions alone are sufficient for behavior
tions, is in general, too removed from the direct
change. Of paramount importance, however, is
provision of services to individuals. By the direct
that the quality of a helping relationship does
monetary support of private sector groups that
have certain technical qualities that can be
are more directly involved with rendering serv-
related to techniques within the "non-technical"
ice, and by placing a high priority on the
area.
support of people in people mediated tech-
Secondly, there is adequate evidence to sup-
nology, the public sector can continue to con-
port some general conclusions about technology
tribute significantly to this kind of technology.
within the helping relationship in the behavioral
Specifically, the public sector can return to a
therapy realm. There is little question that the
level of stability in their dollar support that can
behavioral therapies, or the conditioning and
enable providers in the private sector to attract
modeling of behavior therapies, are affective
and retain people and programs that are directed
means of change (Patterson, 1966.) While these
toward the "caring for" and "supportive ther-
techniques have been available for some time, it
apy" that characterize the "nontechnologies."
is only now that they are beginning to be recog-
One aspect of an existing type of this tech-
nized and deliberately manipulated in a manner to
nology can be reviewed to exemplify an earlier
produce empirical findings permitting the trans-
comment on obstacles to utilization, namely
"
lation of techniques into usable technologies.*
technology has only been applied partially
Accidents are a prevalent cause of disabilities,
to solutions.
(see Discussion of Problems
especially in lower age groups. Some concept of
page 3).
their impact is seen in Figure 9. In nonfatal
A report to Congress, authorized by the
accidents, rehabilitation, job retraining and job
Rehabilitation Act of 1973* and entitled "The
placement are vital ingredients in the total
Role of Sheltered Workships in the Rehabilita-
mixture of services provided. Such services are
tion of the Severely Handicapped" stated that
rendered by dedicated people, most effectively
only about one in ten handicapped persons finds
in service organizations as part of a system that
work after being trained in special workshops.
includes medical care, often monetary assistance
Apparently, the assumption behind the rehabili-
and specific research. As a group, the insurance
tation effort was that most handicapped persons
industry and specific disease foundations have
are placeable in jobs and that all that was needed
been able to mount the kind of broadly based
to accomplish their placement was vocational
centers that include the "nontechnologic" tech-
rehabilitation. In fact, however, the ability to
nologies.
obtain a job is not merely dependent on a
person's job skills. It is also dependent on the
community. Even sanctions, subsidies or quotas
*I am indebted to J. D. Parham, Ph.D. of the Research and
Training Center in Mental Retardation at Texas Tech University
for the suggestion to include the material on behavioral change
*Prepared by Greenleigh Associates, Inc. and reported by UPI in
therapy.
the Washington Star, January 5, 1976.
8
for hiring handicapped persons were not seen as
A recent promising advance in the area of
being successful in altering the statistics on
access to printed matter³¹ may run into similar
employment of the handicapped.
problems. The developers* of a computerized
As an example of well intentioned but per-
device that scans printed pages and reads them
haps misdirected effort, the Sheltered Workshop
aloud in a voice that gives appropriate stresses
Program calls attention to the need for compre-
and pauses, have taken extraordinary pains to
hensive planning and broad input from a variety
involve more than engineering specialities in the
of disciplines before a categorical (i.e., voca-
analysis of need and the various stages of
tional rehabilitation) program is instituted. The
development yet the cost of the unit may be
example further highlights the need for coopera-
prohibitive. These simple examples of tech-
tion between the public and private sectors in
nology in just one area, electronic aids to the
the initial analysis and planning processes that
blind, are representative of the still unmet needs
antedate program implementation. Failure to
of the handicapped. There are multiple similar
effect this type of early cooperation has led to
examples that could be cited: Electromechanical
the failure of more than one technologic inter-
aids for orthopedic disabilities³² and architec-
vention, not limited to the application of tech-
tural barriers that impede access by the handi-
nology to the needs of the handicapped. 10,29
capped.
33
It seems that the private sector has access to
Examples of Thomas' "Halfway Technology"
the expertise of multiple technologies. Espe-
cially, private foundations are best able to
The most active and best known examples of
assemble a variety of experts from both sectors,
technologic intervention are in the group of
public and private. But overall direction seems
applications that compensate for the effects of
placed best in the public sector, provided con-
disorders that lead to handicapping conditions.
sistent, stable planning and follow through can
The list of machines, instruments, devices and
be guaranteed. 29
gadgets is endless. Almost all sciences at the
boundary between technology and medicine
Example of Thomas' "Decisive Technology"
have representative efforts in meeting some need
of the handicapped. All efforts in this category
The most effective technologic interventions
are repairative, substitutive or compensatory for
for the handicapped go almost unnoticed. They
some function lost. The lost functions run a
are taken for granted. Most efforts in this
wide gamut. Figure 8 lists the general functional
category are preventive: Vaccines for immuniza-
needs of the handicapped. Most handicapped
tion against contracting the diseases that lead to
persons regardless othe type of handicap, have a
handicapping conditions or avoidance of some
need in several if not all of the functional
environmental or pharmacologic toxin that af-
categories cited. Thus, it is not surprising,
fects fetal or immediate perinatal well-being.
therefore, that a purely technologic fulfillment
The most spectacular recent example was the
of one area of need will not have great impact
development of the polio vaccine. It is impor-
on the total needs of the handicapped.
tant to note that the final realization of that
Sensory aids to the blind is a field that can
success was based on a long history of seemingly
be used as an illustrative case study. During the
unrelated scientific discoveries in techniques of
past 35 years, many efforts have been made to
cell culture and viral immunology that enabled
develop useful electronic aids for the blind.
Sabin and Salk to complete the attack on the
These are primarily devices that aid mobility or
once dreaded disease, poliomyelitis.
access to printed matter. The field has been
Another illustrative example, currently under
summarized by Nye and Bliss. 30 But no matter
debate, involves the policy for Rubella vaccina-
which of the thirty or so electronic aids that
tion. Congenital Rubella "German Measles" lead
enhance the mobility of the blind works best in
to cataracts, deafness, congenital heart disease
a specific situation, none will significantly
and mental retardation. The spectrum of utiliza-
answer the needs of the blind if building codes
tion of services and dollar costs of the Con-
do not safeguard his access, if recreation facili-
genital Rubella Syndrome are seen in Figure 10.
ties are not available, or if ignorance and
prejudice block acceptance in jobs for which
that person is now available.
*Kurzweil Computer Products, Cambridge, Mass.
9
SPECIAL SERVICES
UTILIZATION (%)
DURATION & COST
Newborn nursery-excess care
20.0
5 days' intensive care + an extra 5 days
= $1,350/hospitalization
Schooling for moderately deaf
23.5
$8,000/yr X 10 yr
Schooling for totally deaf
24.5
$8,000/yr X 20 yr
Heart surgery
35.0
$5,000/operation
Cataract surgery
20.0
$1,000/operation X 2 eyes, 15% failure
resulting in blindness.
Schooling for blind
1.4
$7,500/yr X 20 yr + $1,500/yr X 40 yr
for special equipment
Schooling for moderately retarded
8.4
$3,500/yr X 15 yr
Schooling/institutionalization for
30.0
$7,800/yr X 40 yr
severely retarded
Figure 10. Estimated Frequency of Utilization of Special Services by Persons with Congential Rubella
Syndrome and Estimated Duration and Cost of These Services. 34
Since 1969, when rubella vaccine was first
dalities and indirectly on the "non-medical"
licensed, the policy for vaccination has been a
needs of the handicapped (e.g., recreation, mo-
matter of controversy. Debate continues, but it
bility and education.).
is evident that disciplines other than pure
The field of electronic circuity has been
technology are required. A recent report by a
revolutionized by mircro miniaturization tech-
group of investigators at Harvard, 34 supports
niques primarily developed by the space in-
with data, a change in current U.S. rubella
dustry. Alternative power sources to replace
vaccination policy. For the purposes of review-
standard batteries, some using new nuclear
ing technologic interventions the sequence of
energies, are already in use. Thus, any prosthetic
events cited in their report well illustrates how
device that now employs signal pickup sensors,
the pure science community must interact with
and battery power can be reduced in size and
both the public and private sectors to effect
weight, last longer and work more efficiently.
complete or nearly complete, removal of rubella
Sophisticated microcircuits have already reduced
from the list of causes of handicapping dis-
computer processor size to a degree where
orders. Even compliance with vaccination
intricate mobility prosthetics can be entirely
policies required a coordinated massive educa-
programmed.
tional program of professional and lay persons
Laser technology is another example of
alike. Obstacles to the implementation of such
technology developed elsewhere, being used to
policies after the scientific (i.e., technologic)
aid the handicapped. A special laser beam
portions of the program have been completed,
walking cane* has been used as a mobility aid
stem primarily from the lack of data usually
for the blind. It probes ahead for the blind
derived from broadly based population studies
person, detecting dropoffs, straight-ahead obsta-
and the techniques of mass media advertising
cles and obstacles appearing between chest and
and education. Such are not matters for tech-
head height warning the traveler with auditory
nologists alone.
and tactile signals.
A similar technique, called electroreti-
Promising Technology
nography (ERG) is a means of measuring the
electrical response of the retina to a flash of light.
Technologic applications on the horizon will
In effect ERG measures retinal function. A most
undoubtedly impact directly on handicapped
individuals in diagnostic and therapeutic mo-
*Bionic Instruments, Inc., Bala Cynwyd, Pennsylvania 19004
10
promising application has been the early diag-
the setting of generic frameworks of reference
nosis of a group of hereditary diseases character-
for applied technology and the needs of the
ized by degeneration of the retina, the film-like
handicapped, a delivery system that en-
"seeing-back" layer of the eye.
compasses a broad view of technologic interven-
People with handicaps due to loss of neuro-
tions for the handicapped, and a plan for
sensory control (e.g., muscular paralysis, loss of
assessment of intervention, and (4) the study of
bladder and bowel control) are being aided by
selected examples of technology, it is evident
implanted microcircuits and minute energy
that the requirements for successful technologic
sources. Another technical solution to similar
intervention are:
control problems if offfered by "biofeedback"
A. More efficient organization at a national
techniques whereby the handicapped are re-
level
trained to control body functions by a kind of
B. Planning based on better demographic and
"reconditioning" of their reflexes.
sociologic data
Non-medical technologies will undoubtedly
C. Specialized manpower of the type now
contribute to the overall well being and educa-
being termed "clinical engineers' 8,35,36 who can
tion of the handicapped. Cable TV, an as yet
join the team of specialists working for and with
under utilized medium for specialized mass
the handicapped.
communication, is one such example. Even
D. Coordinated and stable funding of tech-
satellite communication offers unlimited poten-
nologic research, intervention and assessment
tial for recreational and educational needs of the
based on national rather than parochial objec-
handicapped. A collaboration between the
tives.
governments of Canada and the United States
will result in the launching of a Communications
It should also be evident that neither the
Technology Satellite (CTS). It will be available
private nor the public sectors alone can marshal
to each country for a variety of communications
the spectrum of effort required for the success-
experiments. The satellite will permit bidirec-
ful intervention of technology for the handi-
tional audiovisual connections between ground
capped. Each has areas of wherewithal to con-
terminals.
tribute.
The public sector seems better able to develop
a national sense of mission, set national priori-
THE FUTURE
ties, establish consistent funding policies based
on those priorities and marshal the necessary
No one can foretell with certainty the next
specialists of diverse backgrounds including sci-
technologic breakthrough or the next environ-
entists, sociologists and educators. The National
mental or mutational alteration that will present
Academy of Sciences, through committees and
us with new solutions or new problems for the
assemblies within the National Research
handicapped. To be sure, educational and com-
Council, is a particularly striking example of this
munication technology seem poised at the brink
type of role for the public sector.
of innovations that could significantly satisfy
The private sector seems better able to pro-
some needs of the handicapped. Techniques for
vide specialized expertise, conduct basic re-
prenatal diagnosis of genetic and biochemical
search, field test and produce techniques and
disorders that can lead to handicapping condi-
instruments and educate specially targeted con-
tions seem promising. But unless there is
sumers of technologic interventions through a
adapted a technology for analysis, development
multiplicity of societies and foundations.
and application of solutions to practical needs,
Together, both sectors share dual responsi-
the impact of future discoveries or mutations
bilities for the collection and dissemination of
will be unrealized.
information that sensitizes the population,
handicapped and non-handicapped alike, to the
problems and needs of the handicapped. Co-
CONCLUSIONS AND RECOMMENDATIONS
ordinated and consistent overtures to funders,
both federal and private must be made. And
From the foregoing review of (1) definition
finally, the process of implementation requires
and statement of needs of the handicapped, (2)
combined effort of providers and consumers,
definition and subsdivision of technology, (3)
public and private.
11
BIBLIOGRAPHY
Medicine, Fall Meeting, Nov. 9, 1972, Wash-
ington, D.C.
1. Wolf, J.M. and Anderson, R.M. The Mul-
14. Basic Facts on the Health Industry. Report
tiply Handicapped Child. Springfield, III.
of the Committee on Ways and Means, 92nd
Charles C. Thomas, 1969 pp. 363-67.
Congress, First Session. U.S. Govt. Printing
2. Adapted from "New Deal for Handicapped
Off., 1971, Washington, D.C., pp. 8-9.
in Jobs, Housing, Recreation
" U.S.
15. Rice, D.P. and Cooper, B.S. National Health
News and World Report. July 22, 1974, p.
Expenditures, 1929-1971. Social Security
39.
Bulletin, Social Security Administration,
3. Galbraith, J. K. The New Industrial State.
Washington, D.C., U.S. Dept. HEW, Jan.,
Houghton Mifflen Co., Boston, Mass., 1967,
1972.
p. 12.
16. Social Security Administration. National
4. Ford, G. Statement by the President. Fact
Health Expenditures, Fiscal Year 1973.
Sheet, White House Conference on Handi-
Research and Statistics Note No. 24-1973.
capped Individuals, Nov. 22, 1975.
Washington, D.C., U.S. Dept. HEW, Dec.
5. Report of the Committee on Labor and,
27, 1973.
Public Welfare. Rehabilitation Act Amend-
17. Burger, Edward J. Health and Health Serv-
ments of 1974. Ninety-third Congress, 2nd
ices in the United States. Ann. Int. Med.
Session. Report 93-1139, 1973, p.32.
80:645, 1974.
6. Johns, R.J. Is Biomedical Engineering Ful-
18. Gershinowitz, Harold. Applied Research for
filling Its Destiny? Ninth IBM Medical
the Public Good-A Suggestion. Science.
Symposium, Burlington, Vt., October
176:380, 1972.
24-26, 1968, p. 13.
19. Thomas, Lewis. The Technology of Medi-
7. Garrett, C.W. and Von Renner, L.C. Ex-
cine. New England J. of Med. 285:1366,
perience and Perceptions of Aerospace
1971.
Technology Transfer to Health Care De-
20. McKeown, T., Lowe, C.R. An Introduction
livery. Presented at the Tenth Goddard Me-
to Social Medicine. Oxford Blackwell Sci-
morial Symposium, Washington, D.C.,
entific Publications, Ltd., 1966.
March 13-14, 1972.
21. Flagle, C.D. Communications and Control
8. Staros, A. The Clinical Engineer. Presented
in Comprehensive Patient Care and Health
at the Annual Winter Meeting, American
Planning, Ann. N.Y. Acad. Sci. 161:714,
Society of Mechanical Engineers, Detroit,
1969.
Mich., Nov. 11-15, 1973.
22. Kissick, W.L. Health Policy Directions for
9, Hollingsworth, G.L. The Puzzle of Social
the 1970's. New Engl. J. Med. 282:1343,
Sector Markets: How to Swallow a 500-Ton
1970.
Marshmallow. Innovations. No. 30, p. 22,
23. Garfield, S.R. The Delivery of Medical
1972.
Care. Sci. Am. 222:15, 1970
10. Rutstein, D.D. and Eden, M. Engineering
24. Adapted from: Santamour, M. and Ross, K.
and Living Systems: Interfaces and Oppor-
Defining the Problem of Mental Retarda-
tunities. The MIT Press, Cambridge, Mass.,
tion: A Functional Model. Presented at
1970, pp. 303 ff.
Region X AAMD Meeting, 1969.
11. Reynolds, O.E. In "Utilization of Space
25. Donabedian, A. Evaluating the Quality of
Biosciences Technology" Vol. 1, The Trans-
Medical Care. Health Services Research. Ed.
fer of Technology. The Interdisciplinary
by Donald Mainland, Milbank Memorial
Communications Associates, Inc., Washing-
Fund, 1967, pp. 116-203.
ton, D.C., 1971, p. 135.
26. Packer, A.H. Applying Cost-Effectiveness
12. Ayers, W.R., Murray, D.E., Aller, J.C. et al.
Concepts to the Community Health System,
Mobilizing the Emergency Room Record. A
Operations Res. 14:227, 1967.
Case Study in the Capture of Technology
27. Walters, A.A. Production and Cost Func-
Developed Elsewhere for Use in Health Care
tions. An Econometric Survey. Econo-
Delivery. Computers in Biology and Med.
metrics 31:1-66. 1963.
3:153, 1973.
28. The Theory and Empirical Analysis of
13. Thomas, Lewis. Aspects of Biomedical Sci-
Production. Brown, M. Ed. for Columbia
ence Policy. An address to the Institute of
Univ. Press, N.Y., 1967.
12
29. Medical Engineering Development and the
Facilities Laboratories, 850 Third Ave.,
Role of the Federal Government. A Study
N.Y., N.Y. 1975.
Performed for the Director, NIH. Aerospace
34. Schoenbaum, S.C., Hyde, J.N., Bartoshesky,
Corporation, July 5, 1967.
L. et al. Benefit-Cost Analysis of Rubella
30. Nye, P.W. and Bliss, J.C. Sensory Aids for
Vaccination Policy New Engl. J. Med.
the Blind: A Challenging Problem with
294:306, 1976.
Lessons for the Future. Proc. IEEE
35. Oakes, J.B. Clinical Engineering-The Prob-
58:1878, 1970
lems and the Promise. Science 190:239,
31. Machine Reads to the Blind. Focus on the
1975.
News. Medical World News 17:6, 1976.
36. Aller, J.C. The Coming Generation of
32. Staros, A., Peizer, E. and Rubin, G. Applica-
People to Match the New Technology.
tion of Electromechanical Technology to
Presented at Joint Measurement Confer-
Orthopedic Disabilities. Presented to IEEE
ence, National Bureau of Standards, Nov.
International Convention and Exposition,
12-14, 1974.
March 26-30, 1973.
33. Arts and the Handicapped: An Issue of
Access. A publication of the Educational
ATTACHMENT
HANDICAPPING CONDITIONS BY
Emotional Disturbance
DIAGNOSTIC CATEGORIES
Other Physically Handicapping Conditions
(Excluding above mentioned developmental
Developmental Disabilities
disabilities)
Mental Retardation
Major Communications Disorders
Epilepsy
Speech
Cerebral Palsy
Vision
Autism
Hearing
Learning Disabilities
Combined Deafness/Blindness
13
I.
Neurologic:
IV. Myopathies and astrophies:
A. Syndromes of cerebral dysfunction:
1. Muscular dystrophy
1. Cerebral palsy
2. Myotonia
2. Mental deficiency
3. Amyotonia congenita
3. Epilepsy
4. Myasthenia gravis
4. Hyperkinetic-behavior syndrome
A. Miscellaneous:
B. Sensory disorders:
1. Osteogenesis imperfecta and related
1. Vision-blindness, partial sight
disorders
2. Hearing-deafness, other hearing defects
2. Bone tumors
3. Speech-articulatory disorders
a. Stuttering
V. Cardiac:
b. Cleft palate
1. Congenital heart disease
c. Aphasia
2. Acquired heart disease
4. Perception-conceptual and reading
disorders
VI. Respitatory:
5. Kinesthetic-tactile disorders
1. Asthma
C. Miscellaneous:
2. Cystic fibrosis
1. Hydrocephaly
3. Tuberculosis
2. Brain-tumor effects
4. Bronchiectasis
3. Progressive cerebral and lenticular
degeneration
VII. Genitourinary:
4. Cerebromacular degenerative diseases
1. Congenital renal anomalies
5. Other progressive neurologic diseases
2. Nephrosis
3. Chronic glomerulonephritis
II.
Orthopedic:
A. Residuals of trauma and accidents:
VIII. Endocrine-Metabolic
1. Sequelae of burns
1. Pituitary disorders
2. Spinal-cord injuries
2. Thyroid disorders
3. Amputations
3. Parathyroid disorders
B. Malformations:
4. Adrenal disorders
1. Achondroplasia and chrondro-
5. Diabetes
dysplasia
6. Lipoid disorders
2. Foot deformities, dislocation of the
hip
IX. Blood:
3. Spina bifida and related congenital
1. Leukemia
defects
2. Hemophilia
4. Cleidocranial dysostosis
X.
Psychiatric:
III. Residuals of Infection:
1. Psychoses
1. Poliomyelitis
2. Neuroses and anxiety states
2. Osteomyelitis
3. Psychosomatic disorders
3. Periostitis
4. Arthritis
XI. Other
5. Tuberculosis
1. Cytogenetic defects
6. Rubella
2. Amino acidopathy
Source: Adapted from E. Denhoff and I. Robinault, Cerebral Palsy and Related Disorders (New York: McGraw-Hill Book Company,
1960).
14
Dysentery
Pneumonia
Tuberculosis, all forms
Bronchitis, emphysema, and asthma
Meningococcal infections
Other diseases of the respiratory system
Acute infectious encephalitis
Peptic ulcer
Infectious hepatitis
Appendicitis
Typhus and other rickettsioses
Intestinal obstruction and hernia
Venereal disease
Gastritis, duodenitis, enteritis, and colitis
All other diseases classified as infective and parasitic
Cirrhosis of liver
Malignant neoplasm, including neoplasms of lym-
Nephritis and nephrosis
phatic and haematopoietic tissues
Hyperplasia of prostate
Benign neoplasms and neoplasms of unspecified nature
Complications of pregnancy, childbirth, and the puer-
Diabetes mellitus
perium
Avitaminoses and other nutritional deficiencies
Congenital anomalies
Anemias
Birth injuries, difficult labor, and other anoxic and
Nonmeningococcal meningitis
hypoxic conditions
Active rheumatic fever
Other causes of neonatal mortality
Chronic rheumatic heart disease
Symptoms and ill-defined conditions
Hypertensive disease
All other diseases
Ischaemic heart disease
Motor vehicle accidents
Other forms of heart disease
All other accidents
Cerebrovascular disease
Suicides
General arteriosclerosis
Homicides
Other diseases of arteries, arterioles, and capillaries
Legal intervention
Influenza
All other external injuries
1 Stedman's Medical Dictionary, 22nd Ed. (Baltimore: William and Wilkins Co., 1972).
15
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
CIVIL RIGHTS
Awareness Paper Prepared By
Louis T. Rigdon, Esq.
White House Conference on Handicapped Individuals
Washington, D.C.
Pub. WHC -- 21
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following council members for their extensive assistance: Dr. Paul Hoffman; Jesse
Brown; Albert Pimentel; Burt Risley and Ms. Jayne Shover. Major contributors to
this paper were: Ms. Judy Heumann; Irvin Rutman; Ms. Rita McGaughey; Ms. Marie
Thompson; Eric Dibner; John McLaughlin. Special thanks go to members of the
Technical Review Team: Ms. Marcia Burgdorf, Director, Developmental Disabilities
Law Project; Ms. Eunic Fiorito, Mayor's Office for the Handicapped, (New York);
Dr. James Folsom, Director, Rehabilitation Medicine and Surgery, Veterans
Administration; Lex Frieden, University of Texas; and Ms. Essie Morgan, Chief,
Socio-Economic Rehabilitation and Staff Development, Spinal Cord Injury, Veter-
ans Administration, and Mrs. Arlene Williams, Staff, White House Conference.
This Awareness Paper was prepared by subject-matter experts to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This Paper was not intended to be all-inclusive, but
was designed to stimulate discussions.
ACKNOWLEDGMENT OF SOURCES
To a significant extent this paper consists of excerpts of articles from law reviews
and other periodicals and reports. The source of each excerpt will be shown at the
beginning of each particular section. The quotation marks around the excerpts
included and the footnotes have been omitted.
I want to express my appreciation to the authors whose research products have
been used in this paper. A bibliography of the sources relied upon will appear at the
end of the paper.
Louis T. Rigdon
TABLE OF CONTENTS
Page
Introduction: Human and Civil Rights of All Persons
1
Overview of Unequal Treatment
1
Civil Rights Statues
3
Federal
3
State and Local
4
Other Federal and State Statutes
4
Education-Right to Equal Educational Opportunity
5
The Right to Equal Employment Opportunities and Just Payment for Labor
6
Freedom to Move About-Architectural and Transportation Barriers
6
Architectural Accessibility
7
Transportation Accessibility
7
Right to Treatment in a Minimally Restrictive Environment
8
The Right to Refuse Treatment and The Right to Be Free
From Experimentation
11
The Right to Live in the Community
11
The Right to Privavcy and Confidentiality
11
The Right to Vote
11
The Right to Marry, Procreate, and Raise Children
12
Right to Nondiscriminatory Financial Transactions
13
Handicapped Persons are Entitled to Equal Projection of the Laws
13
Appendix
14
Selected Bibliography
22
INTRODUCTION: HUMAN AND
Many in government as well as in private
CIVIL RIGHTS OF ALL PERSONS
enterprise do not want what should be the civil
rights of "handicapped" individuals to be en-
The Declaration of Independence proclaims
forced for the same reasons that the civil rights
that all men are created equal and that they
of others have been difficult to enforce: because
possess certain unalienable rights, such as life,
the group needing these rights is culturally out
liberty, and the pursuit of happiness. This means
of the mainstream and is often misunderstood;
that all men are equal or the same in being
because it will cost money; and, it will be
human beings. It is an affirmation of the
inconvenient and troublesome. Notwithstanding
community of human beings. Human beings
this vestigal attitude, physically and mentally
have certain rights inherent in their humanness
handicapped persons have the right to make
which cannot be alienated or taken away.
choices and decisions which affect their lives.
In this country, most human rights find their
This dignity of risk is an integral part of being a
specificity in the civil rights based in Federal and
person in a community of persons. It is clear
state constitutional and statutory provisions. A
that the lack of enforcement provisions in
civil or legal right is one which may be ulti-
existing laws and regulations as well as knowl-
mately enforced in a court of law.
edgeable advocates have hampered imple-
Physically and mentally disabled or handi-
mentation efforts.
capped individuals have both different and
Congress, in Public Law 93-516 found that it
similar problems as they relate to the state (used
is critically important to provide all handicapped
generically) and to other so-called normal indi-
individuals equality of opportunity, equal access
viduals. Most physically or mentally disabled
to all aspects of society, and equal rights secured
persons and their advocates object to the terms
by the Constitution. Participants in the White
"handicapped" or "retarded" because they tend
House Conference on Handicapped Individuals
to stress the differences rather than the charac-
are directed to make recommendations to effec-
teristics which these persons share with others.
tuate the objective of complete integration of all
Moreover, the term "disability" is preferred over
individuals into normal community living, work-
"handicapped." A disability connotes more the
ing, and service patterns. To assist participants in
condition which the person has whereas "handi-
their consideration of recommendations, this
cap" refers to an impediment caused by the
awareness paper attempts to lay a foundation of
environment.
understanding of the range of areas of concern.*
Nevertheless, "handicapped" is currently both
the accepted everyday expression and a common
OVERVIEW OF UNEQUAL TREATMENT
statutory term for describing persons with dis-
abilities. For the sake of uniformity, the word
Historical and present-day examples of dis-
"handicapped" will be used in this paper. (See
criminatory treatment afforded handicapped
Appendix I.)
people are not difficult to find. Most states
either have or had statutues providing for the
*Rights have their source in the following:
involuntary sterilization of mentally handi-
1. United States Constituion concepts such as the right to
capped and certain physically handicapped citi-
equal protection of the law, to life, liberty, and property
protected by due process of law, and to those guarantees
zens. In the late 1950's, 28 states had steriliza-
granted in the Bill of Rights and the Thirteenth, Fourteenth,
tion statutes, and 17 of those laws specifically
Fifteenth, Nineteenth, and Twenty-fifth Amendments;
included persons with epilepsy, as well as the
2. Federal legislation and regulations-The Rehabilitation
mentally ill and mentally retarded.
Act of 1973 and Amendments of 1974, the Fair Labor
Many states have prohibitions on marriages
Standards Act, the Elementary and Secondary Education Act,
between handicapped persons. Most states pro-
the Architectural Barriers Act, and the Education of All
Handicapped Children Act of 1975, and the Developmental
scribe marriage where one of the parties is
Disability Facilities and Bill of Rights Act of 1975.
mentally ill or mentally retarded, and some also
3. State constitutions creating legal rights to equal public
education and forbidding discrimination against a person
because of a handicapping condition;
*The United Nations General Assembly on December 9, 1975,
4. State legislation and regulations-civil rights, employ-
adopted THE DECLARATION ON THE RIGHTS OF DIS-
ment, education, public housing, community and residential
ABLED PERSONS (See Appendix II).
service programs, public accommodations, curb-cut and ramp
+M.P. Burgdorf and R. Burgdorf, Santa Clara Lawyer, p. 861 et
laws.
seq.
1
limit the right of physically handicapped people
cerebral palsy have been able to secure employ-
to marry. At least 17 states have had prohibi-
ment.
tions against marriage by persons with epilepsy.
These figures are dismal indeed when one
A number of states restrict or deny the right
considers that the majority of unemployed
of mentally handicapped people to enter into
handicapped persons are quite capable of com-
contracts.
peting in the job market. Numerous studies
A blatant example of discrimination against
indicate that handicapped workers perform just
handicapped people is found in a federal statute
as well, if not better, than fellow non-
outlining qualifications for admission of aliens
handicapped workers. But employers continue
to the United States. The enforcement of these
to discriminate against handicapped job appli-
sections has blocked the entry into this country
cants.
of numerous persons afflicted with various types
Denial of employment opportunities is espe-
of physical and mental disabilities.
cially outrageous in regard to handicapped veter-
Handicapped persons are routinely denied
ans. While the unemployment rate for Vietnam
other rights which most members of our society
Era veterans at the end of 1971 was estimated at
take for granted, including the right to vote, to
8.8%, 87.7% of the handicapped veterans were
obtain a driver's license or a hunting and fishing
unable to find jobs. The disabled Vietnam
license, to enter the courts, and to hold public
veteran "seeks employment and is rebuffed
office.
either by the private employer as incompetent
Often state laws and practices concerning
or by his Government as being essentially
handicapped people can only be termed "bi-
unplaceable."
zarre." One collection of strange provisions
An additional problem is that those handi-
which discriminate against physically-
capped persons who do manage to find employ-
handicapped persons can best be described as
ment tend to be channeled into unskilled,
"ugly laws.' Until recently, the Chicago Munici-
low-paying positions involving monotonous
pal Code provided
tasks.
Transportation is another major area of cur-
no person who is diseased, maimed,
rent discrimination. In our mobile society, hand-
mutilated or in any way deformed so
icapped people are too frequently denied access
as to be an unsightly or disgusting
to public transportation. The Air Traffic Confer-
object or improper person to be
ence has promulgated the following rule con-
allowed in or on the public ways or
cerning service to handicapped passengers by
member airlines: "Persons who have malodorous
other public places in this city, shall
therein or thereon expose himself to
conditions, gross disfigurement, or other un-
public view, under a penalty of not
pleasant characteristics so unusual as to offend
less than one dollar nor more than
fellow passengers should not be transported by
fifty dollars for each offense.
any member." Such vagueness permits airlines to
effect policies of discrimination toward handi-
capped persons.*
Columbus, Ohio; Omaha, Nebraska; and other
Moreover, a Civil Aeronautics Board regula-
cities still have similar ordinances in effect.
tion has been interpreted by most airlines to
Employment is one area of particularly wide-
require that an attendant accompany all passen-
spread discrimination against those with handi-
gers in wheelchairs, whether or not these passen-
caps. Only a small percentage of the handi-
gers are capable of caring for themselves in
capped Americans who could work if given the
flight.
opportunity are actually employed. Transporta-
Similar discriminatory practices have occured
tion, physical barriers, and employers' prejudices
on or in surface transportation systems like
have combined to deny the handicapped person
interstate bus lines. Railroads have also been
access to many avenues of employment available
to other citizens. It is estimated that only
one-third of the blind persons of working age in
*One airline will not allow an unaccompanied blind person to sit
this country have jobs. Only 47% of the paraple-
next to a person of the opposite sex; another refuses to accept
persons with epilepsy as passengers; at least seven airlines refuse
gics of working age are employed. And, only a
service to mentally ill passengers; and one airline expressly
handful of the persons of working age with
excludes mentally retarded people from passenger service.
2
guilty of unequal treatment of handicapped
under any program or activity receiving federal
persons, particularly in requiring that a fare-
financial assistance."
paying attendant accompany all passengers in
The Rehabilitation Act of 1973 omitted
wheelchairs, regardless of the passenger's ability
provisions describing the implementation and
to attend himself.
enforcement procedures which would be neces-
Even where transportation agencies do not
sary to carry out Section 504. However, Con-
have active policies which restrict the travel
gress stated that the language was mandatory
rights of handicapped passengers, architectural
and envisions the implementation of a Compli-
impediments and physical obstacles may render
ance Program which was similar to Title VI of
use of transportation facilities impossible for
the Civil Rights Act of 1964 and Section 901 of
various groups of handicapped citizens. The
the Education Act Amendments of 1972 (relat-
"fundamental right to travel" has little meaning
ing to sex).
if architectural barriers render a person unable
Because of the Department of Health, Educa-
to enter buses, trains, planes, or transportation
tion, and Welfare's experience in dealing with
terminals.
handicapped persons and with the elimination of
In some instances, discriminatory practices
discrimination in other areas, Congress desired
threaten the lives of handicapped individuals. A
that HEW assume responsibility for coordinating
number of situations have occurred in which
the Section 504 enforcement effort. (See Ap-
medical personnel or parents of handicapped
pendix III).
children have made no effort to provide handi-
While the Department of Health, Education,
capped patients with lifesaving medical services
and Welfare had not published proposed Section
which would be administered as a matter of
504 regulations at the time this paper is being
course to non-handicapped patients.
written, the President on April 28, 1976 issued
Many cases involving both physically and
Executive Order 11914, entitled "Nondis-
mentally handicapped infants who have been
crimination with Respect to the Handicapped in
"allowed to die" have been reported. One
Federally Assisted Programs." Under this Execu-
observer estimates that unnecessary deaths of
tive Order, the Secretary of Health, Education,
handicapped babies in the United States may
and Welfare is directed to coordinate imple-
number in the thousands each year. Recently,
mentation of Section 504 by all Federal depart-
advocates for handicapped infants have success-
ments and agencies empowered to extend Fed-
fully challenged the legality of denying medical
eral financial assistance to any program or
treatment to such children. However, the fact
activity.
that such events occur in a country which
The Secretary of HEW shall:
esteems life as an "inalienable" right is frighten-
ing evidence of the discriminatory and inequita-
1. Establish standards for determining who
ble treatment afforded handicapped people.
are handicapped individuals and guidelines for
determining what are discriminatory practices,
within the meaning of Section 504.
CIVIL RIGHTS STATUTES
2. Assist Federal departments and agencies to
coordinate their programs and activities and
Federal:
shall consult with such departments and agen-
cies, as necessary, so that consistent policies,
While there have been unsuccessful attempts
practices, and procedures are adopted with
to include persons with physical and mental
respect to the enforcement of Section 504.
disabilities as a separate category in the Federal
Civil Rights Act of 1964, Section 504 of the
Each Federal department or agency must
Rehabilitation Act of 1973 is the nearest exist-
issue rules, regulations, and directives consistent
ing federal law in the nature of civil rights
with the standards and procedures of HEW. The
statute applicable to handicapped individuals.
Secretary of HEW may adopt regulations neces-
Section 504 provides that "no otherwise
sary to carry out his responsibilities. (See Ap-
qualified handicapped individual in the United
pendix IV.) Legal action has been initiated
States shall, solely by reason of his handicap, be
(Cherry v. Matthews) to force the issuance of
excluded from the participation in, denied the
Section 504 regulations. Issues involved in devel-
benefits of, or be subject to discrimination
oping regulations to enforce Section 504 have
3
included the economic impact or cost and
programs and anti-discrimination provision, re-
benefits of such action, the interrelationship of
quires the state vocational rehabilitation agen-
the concepts of discrimination, accommodation,
cies to develop individualized written rehabilita-
and affirmative action and architectural barriers,
tion programs on each client. The program is to
and the meaning of "otherwise qualified hand-
be promptly developed by the rehabilitation
icapped individuals." (See Appendix V.)
counselor and the handicapped individual or his
parent or guardian spell-out the terms, condi-
State and Local
tions, rights, and remedies under which services
are provided to the individual giving the long
Illinois and Florida are the only states which
and immediate goals to be attained. Periodic
have constitutional provisions prohibiting dis-
review and internal safeguards are provided for.
crimination. In Illinois, discrimination in the sale
Newly enacted federal and state develop-
and rental of property and in employment
mentally disabled and mental retardation laws
against physically and mentally disabled persons
have established bills of rights to safeguard the
is forbidden. In Florida, no right can be denied
human dignity of the persons involved.
on the basis of a physical handicap.
Client assistance projects are designed to
Several states and cities like Iowa, California,
advise clients on available benefits and help
Kansas, Indiana, Wisconsin, Washington, New
them in their dealings with rehabilitation agen-
York, New Jersey, the District of Columbia, and
cies. The Rehabilitation Act Amendments of
New York City have enacted civil rights or
1974 emphasize reporting and analyzing of the
anti-discrimination in access to public accommo-
reasons for determinations of ineligibility for
dations, employment, rental or leasing or other
services and for re-evaluating individuals refused
transactions involving housing. Some statutes,
services to ascertain whether they have any
like that of California, protect the right of access
potential for achieving vocational goals. Clients
to streets, highways, and public conveyances.
must be given opportunity to participate in
The Civil Rights Act of the State of Washington
determination of service ineligibility and be
bans discrimination in credit and insurance
advised of their rights and the remedies available
transactions. White can laws securè the right of
to them. Physically and mentally handicapped
blind and other physically handicapped persons
persons who meet the statutory definitions of
to use sidewalks, streets, buildings, and transpor-
"handicapped individuals, severely handicapped
tation especially with the use of a guide dog.
individuals, or developmentally disabled indi-
(See Appendix VI.)
viduals" can qualify for benefits, assistance, and
State statutes generally establish a state-wide
programs under the Housing and Community
commission to hear and receive complaints and
Development Act of 1974, Social Security Acts,
to enforce prohibitions. State prohibition does
Supplementary Security Income, National
not pre-empt local laws not inconsistent with
Health Planning and Resources Development
the state law that deals with the same subject
Act of 1974, Developmental Disability Assist-
matter.
ance and Bill of Rights Act of 1975, and the
Education of All Handicapped Children Act of
Other Federal and State Statutes
1975.
History shows that effective advocates are
The Rehabilitation Act of 1973 (Public Law
vital in achieving and implementing the rights
93-112),* in addition to the affirmative action
of any group. Advocacy programs for both
physically and mentally handicapped children
*The Rehabilitation Act of 1973 defined "handicapped individ-
and adults have been supported by the Fed-
ual" as any individual who (a) has a physical or mental
eral government and other groups. With the
disability which for such individual constitutes or results in a
substantial handicap to employment, and (b) can reasonably be
passage of the Developmentally Disabled Assist-
expected to benefit in terms of employability from vocational
ance and Bill of Rights Act of 1975 (Public Law
rehabilitation services provided under Title I and II of that Act.
94-103), it appears that the advocacy system for
The Rehabilitation Act Amendments of 1974 (Public Law
persons with disabilities will be broadened. This
93-516) changed the definition for purposes of Titles IV and V
Act requires that states receiving allotments
to any person who (a) has a physical or mental impairment
thereunder establish a system to protect and
which substantially limits one or more of such person's major
life activities, (b) has a record of such an impairment, or (c) is
advocate the rights of persons with developmen-
regarded as having such an impairment.
tal disabilities with the authority to pursue legal,
4
administrative, and other appropriate remedies
child is provided (a) adequate alterna-
to protect such persons receiving treatment
tive educational services suited to the
services or habitation within the State. The
child's needs which may include spe-
advocacy system must be independent of the
cial education or tuition grants, and
State agencies providing the treatment services
(b) a constitutionally adequate prior
and habitation.
hearing and periodic review of the
Hopefully, this new Federal legislative pro-
child's status, progress, and the ade-
gram and other publicly and privately supported
quacy of any educational alternative.
activities will assist efforts to develop strategies
348 F. Supp. at p. 878.
for the establishment of a coordinated nation-
wide legal advocacy network for persons with
The Mills court based its decision on the due
disabilities.
process and equal protection clauses of the U.S.
Constitution, defeating the concept of uneduca-
EDUCATION-RIGHT TO EQUAL
bility and making its ruling applicable regardless
EDUCATIONAL OPPORTUNITY*
of degree of type of exceptionality and regard-
less of the fiscal impact on the school system.
The United States Supreme Court in 1954 in
Courts in approximately 40 states have fol-
Brown v. Board of Education, 347 U.S. 438,
lowed the PARC and Mills decisions. Most
placed into American Constitutional Law the
notable of these successive cases is In re G.H.
cornerstone of the concept of the right to an
218 N.W. 2d 441 (1974) where a state Supreme
equal educational opportunity. Every child, in-
Court held that administrative buckpassing as to
cluding every handicapped child, must be
whose responsibility it was to educate a handi-
allowed access to an appropriate program of free
capped child violated the rights of that child.
public education suited to his needs. The appli-
(See Appendix VII.)
cation of this principle condemns as unconstitu-
The Constitutional doctrine has been best
tional any attempt to exclude any handicapped
explained by Attorney Paul Dimond. He wrote:
child or group of such children from the public
"First, the unjustified exclusion of any child
education system. "Zero reject" public educa-
from all public schooling denies to that child the
tion is mandated.
equal protection of the laws when the state
In Pennsylvania Association for Retarded
makes the opportunity freely available to other
Children v. Pennsylvania, 334 F supp. 1257
children. Second, the operation of our unfair
(E.D. Pa. 1971) and 343 F Supp. 279 (E.D. Pa.
procedure in the stigmatization by public au-
1972), hereinafter PARC, the principle of equal
thority of any person or the denial to him of
educational opportunity was applied to all
any public good denies the process due each
mentally retarded children in the state of Penn-
person under the Fourteenth Amendment. Such
sylvania.
a stignatization and denial is involved in labeling
In 1972 the principles of the PARC case as to
children as 'exceptional,' 'retarded,' or 'handi-
mentally retarded persons were applied to chil-
capped,' and placing them in special classes, or
dren with all types of handicaps in the case of
excluding them from schooling entirely. These
Mills v. Board of Education of District of
two rights, equal protection and due processs,
Columbia (348 F. Supp. 866 (DDC 1972)). The
merge to form the emerging constitutional right
District Court ruled that the exclusion of handi-
to an education, which guarantees to every child
capped children from the public school system
a minimally adequate publicly supported educa-
was violative of due process and equal protec-
tional opportunity."
tion. The court ordered
that no child eligible for a publicly
THE RIGHT TO EQUAL EMPLOYMENT
supported education in the District of
OPPORTUNITIES AND JUST
Columbia public schools shall be ex-
PAYMENT FOR LABOR*
cluded from a regular school assign-
There is no constitutional right which guaran-
ment by a rule, policy, or practice of
tees a person a job. However, the total elimina-
the Board of Education of the District
tion of handicapped persons from consideration
of Columbia or its agents unless such
*R. Bergdorf, Jr., NCLH Paper pp. 10-12 and GAO Report
*R. Burgdorf, Jr., NCLH Paper and Laski, at p. 20.
(1974) pp. 1-3.
5
for a job may be constitutionally prohibited.
provides that any contract in excess of $2500
While a person may not be absolutely entitled to
entered into by a federal department or agency
employment, he cannot be arbitrarily and un-
for the procurement of personal property and
fairly discriminated against. Denial of the right
nonpersonal services (including construction) for
to equal employment opportunities may violate
the United States shall contain a provision
state and federal constitutional guarantees of
requiring that in employing persons to carry out
equal treatment.
such contract the party contracting with the
As early as 1915 the United States Supreme
United States shall take affirmative action to
Court declared that
employ and advance in employment qualified
the right to work for a living in the
handicapped individuals. This section is also
common occupations of the commun-
applicable to subcontract in excess of $2,500.
ity is of the very essence of the
The President was directed to implement the
personal freedom and opportunity
provisions of this section by promulgating regu-
that it was the purpose of (the Four-
lations within 90 days after enactment.
teenth) Amendment to secure. Truax
If a handicapped individual believes any per-
v. Reich, 239 US 33, 41, (1915).
son has failed or refuses to comply with the
provisions of this contract, such an individual
This is a new area of litigation, and judicial
can file a complaint with the Department of
precedent directly on point is only beginning to
Labor. The Department shall promptly investi-
develop.
gate such complaint and shall take such action
The right of handicapped persons to be free
thereon as the facts and circumstances warrnat,
from discriminatory practices concerning hiring,
consistent with the terms of such contract and
firing, and promotions is closely related to a
the laws and regulations applicable thereto.
right about which the courts have ruled: that is,
Requirements of this section may be waived
the right to just compensation for labor. In the
in whole or in part by the President with respect
past many residential institutions for handi-
to a particular contract or subcontract in accord-
capped people have required the residents to
ance with the guidelines set forth in regulations
perform strenuous physical labor for no pay,
which he shall prescribe when he determines
under the guise of "work therapy." This slave
that special circumstances in the national inter-
labor, termed "peonage" has been challenged
est so require and states in writing his reasons
in the courts. In a landmark decision, Souder v.
for such determination.
Brennan, 367 F.Supp. 808 (D.D.C. 1973), the
The Vietnam Era Veterans' Readjustment
U.S. District Court for the District of Columbia
Assistance Act of 1974 mandated a similar
ruled that residents of such institutions are
affirmative action program for disabled veterans
governed by minimum wage and overtime com-
and veterans of the Vietnam Era. Regulations
pensation provisions. Henceforth, if residents are
promulgated by the Department of Labor were
forced to work, they will be guaranteed a wage.
proposed to assure compliance with Section 503
Since 1942, the Civil Service Commission and
and Section 401 of the Vietnam Era Veterans'
the Congress have taken positive actions to
Readjustment Assistance Act of 1974. Section
remove barriers in employing the handicapped.
503 regulations were put into effect with their
The rehabilitation Act of 1973 (PL 93-112)
publication on April 16, 1976. The responsi-
imposes additional review and reporting require-
bility for enforcement of Section 503 has been
ments on the CSC and other federal agencies
placed in the Office of Federal Contract Compli-
relative to promotion and support of employ-
ance Programs of the Department of Labor. (See
ment opportunities for the handicapped.
41 FR 16147-16155, April 16, 1976).
Specifically, the Act provides for establishing
an Interagency Committee on Handicapped Em-
FREEDOM TO MOVE ABOUT-
ployees to provide a focus for federal employ-
ARCHITECTURAL AND
ment of handicapped individuals and to insure
TRANSPORTATION BARRIERS*
that the special needs for such individuals are
met. The Act requires federal agencies and state
Freedom to move about with the least
vocational rehabilitation agencies to establish
amount of avoidable restrictions is essential to
affirmative action programs for employment of
*GAO Report at p. 1-5; Note GEO L J AT p. 1509-1512;
handicapped individuals. Section 503 of the Act
Actenberg at p. 196; Farber at p. 112.
6
life itself and all of its activities. Architectural,
responsibilities, such as the fire marshall. At
transportation, and communication barriers
least one state, however, Massachusetts, has
affect one's education, health, recreation, em-
established an Architectural Barriers Compliance
ployment, and social relationships. To a sub-
Board.
stantial extent these barriers are what actually
An important recent development in the area
"handicap" persons who have physical disabili-
of architectural barrier law was the creation of
ties.
an Architectural and Transportation Barriers
Compliance Board by the 93d Congress. While it
Architectural Accessibility
is too early to assess the Board's impact on the
administration of the Architectural Barriers Act
Handicapped individuals are presently ex-
of 1968, the Board certainly has the potential to
cluded from many public buildings by architec-
effect a major improvement in the Act's credibil-
tural barriers ranging from monumental stair-
ity.
cases to 6" curbs. If handicapped individuals
With respect to public buildings, federal law
cannot enter and use public buildings, they
requires that all new federal and federally
cannot easily vote, obtain governmental services,
assisted facilities designed for public use be
conduct business, or become independent and
readily accessible; however, there is no provision
self-supporting. Efforts to enhance talents and
for existing structures. State statutes addressing
more job skills become meaningless at the
the problem of architectural barriers also gener-
jobsite if the usual places of business are
ally ignore the need for modifications of existing
inaccessible.
buildings. It should be noted that the Supreme
The Architectural Barriers Act of 1968 is
Court long has recognized that citizens have the
aimed toward the elimination of structural
right to come to their "seats of government" to
barriers and to promote accessibility in public
transact business and petition for redress of
buildings constructed, leased, altered, or fi-
grievances. This freedom to petition is protected
nanced by or on behalf of the United States
by the First Amendment and applies to all
subsequent to the date of enactment. However,
branches of government, including the adminis-
this Act does not effectively accomplish that
trative agencies. (See Friedman v. City of
which it purports to do. As a result of easily
Guyahoga, Case No. 895961 (Ct. of Common
avoidable ambiguities in the statutory language
Please, Cuyahoga City, Nov. 15, 1972)-
and unsupervised administrative dilution even
Appendix VIII.)
where the statute does seem clear and un-
Since the physical barriers which impede the
equivocal on its face the Act simply does not, in
handicapped individual's access generally exist
legal or practical effect, "insure that physically
because of poor planning choices and serve no
handicapped persons will have ready access to,
useful purpose, they may be attacked as un-
and use of, (federal) buildings."
reasonable and discriminatory. States have the
By 1974 all 50 states and the District of
alternative when building facilities to use designs
Columbia had, through legislation, executive
which would make facilities fully accessible at
directives, or building codes, required the elimi-
similar cost. By an official choice of construc-
nation of architectural barriers in public build-
tion, a state may possibly infringe upon the
ings. Many state and local architectural barriers
rights of handicapped persons; therefore, the
laws mandated standards of accessibility for
state has a duty to eliminate all such impedi-
both publicly funded buildings and publicly
ments to the free exercise by handicapped
used by privately owned buildings. The Federal
individuals of their rights. The courts, however,
Highway Act Amendments of 1973 and many
will tend to order building modifications, costly
state and local acts provide for curb-cuts and
or otherwise, when Bill of Rights freedoms are
ramps. Standards of accessibility followed by
involved.
barrier laws encompass requirements for visual
In Washington Urban League v. Washington
and auditory communication devices. Unlike the
Metropolitan Area Transit Authority (D.D.C.
Federal Government, most state laws do not
1973),* Judge William Jones enjoined the Wash-
establish a special body to coordinate enforce-
ington Metro Subway System from operating
ment of and compliance to standards. Instead,
they usually leave such compliance enforcement
*Public Law 91-205 (1970) made 1968 Federal Barriers Act
to state and local agencies charged with other
applicable to Washington, D.C. Metro Subway facilities.
7
commercially until it was made accessible to
abled through its rulemaking authority is found
physically handicapped persons by the installa-
in the airline situation. At the present time the
tion of vertical elevators. Since the Metro case
Federal Aviation Agency (FAA) has yet to issue
centered on a question of statutory interpreta-
permanent provisions which impose a duty on
tion, the defendants' arguments and actions,
all interstate airlines to serve the severely dis-
interpreting handicapped persons out of the
abled. Therefore, airlines' pilots and officers
transportation system, are instructive as to the
have had extensive discretion in determining
price handicapped citizens have had to pay for
whether to allow the disabled on airplanes. The
reliance on legislative measures to achieve re-
theory behind this discretion is that disabled are
form and augment services. The history of
most likely to be injured in a crash or will take
discrimination in generic programs leading to
up valuable time of the flight personnel in an
specialized legislation to provide for handi-
emergency. The first theory disregards the dis-
capped persons, requiring specialized funding,
abled person's own willingness to take the risk
which may or may not be provided, has led to
of such danger. Each airline has instituted its
some peculiar attitudes and assumptions relating
own policy in this regard.
to rights of handicapped persons under statute.
In terms of future litigation the newly pro-
In reviewing implementation of state statutes,
posed federal regulations may not improve the
it is possible to derive two widely practiced rules
situation greatly. Under the proposed regula-
of construction which, until recently, have gone
tions, only the same number of severely disabled
unchallenged. First, that general laws providing
persons are permitted on each flight as there are
benefits and protection to all citizens implicitly
emergency exits, and only one person confined
exclude handicapped persons. Second, that man-
to a litter is permitted per flight. The handi-
datory language in specialized legislation is
capped person is not allowed to sit in the seat
something less than mandatory when applied to
nearest any of the exits. Another drawback of
handicapped persons.
the proposed regulations is the definition of a
Architectural barriers legislation is but an-
handicapped person as "a person who may need
other example. While provisions vary from state
the assistance of another person to expeditiously
to state, coverage is generally limited to new
move to an exit in the event of an emergency
public buildings, enforcement is diffuse and
evacuation." As stated by Senator Tunney, this
weak, and the statutes are riddled with waiver
definition is "so vague and general that anyone
clauses. Thus, it is important for handicapped
from one's grandmother to a skier with a
persons to establish that these statutes are in no
sprained ankle could be classed as handicapped."
way pre-emptive-that they do not define the
limits of right to access to public buildings and
RIGHT TO TREATMENT IN A MINIMALLY
accommodations.
RESTRICTIVE ENVIRONMENT*
Transportation Accessibility
The institutionalization of persons with men-
tal disabilities, including the mentally ill and the
The right to travel and to use the instrumen-
mentally retarded, has produced an increasing
talities of interstate commerce are fundamental
amount of litigation specifying the legal rights of
rights under the Constitution. The issue here is
not only mentally disabled persons, but also
how this right and other First Amendment rights
physically disabled persons who are insti-
affect transportation of handicapped individuals
tutionalized. The legal issues involved in the
on intercity buses, rail, airplanes, and other
institutionalization of the mentally ill frequently
forms or instrumentalities of transportation.
apply to the mentally retarded.
Lawsuits aimed at achieving actual accessibility
Legal concern with the institutionalized men-
in public transportation, especially for persons
tally ill has centered on those who are involun-
in wheelchairs, have been brought in New York,
tarily committed for treatment. This is so
Washington, California, Alabama, Wisconsin,
because such commitments, in the Supreme
Michigan, and Maryland. Thus far the courts
Court's words, involve "a massive curtailment of
have not recognized a right to actual access by
persons who use wheelchairs.
Another instance in which a federal agency
*Burgdorf and Burgdorf, Vol. 15, Santa Clara Lawyer, pp.
has not made adequate provision for the dis-
891-99; Klein, Background Paper, at app. 3-22.
8
liberty (by the state)," which calls into play a
the confinement is for humane thera-
whole host of constitutional protections.*
peutic reasons and then fail to provide
Most states require that to be committed a
adequate treatment violates the very
person be "mentally ill't and either dangerous
fundamentals of due process.
to himself or others, or in need of treatment.
Civil libertarians have argued that unless a
Relying upon Rouse, the Wyatt decision
person is physically dangerous, the state has no
declared that where patients were involuntarily
legitimate purpose in confining him and impos-
committed for treatment purposes through non-
ing treatment against his will. A few federal
criminal procedures lacking the constitutional
courts have accepted this constitutional attack
safeguards afforded to criminal defendants, they
on the parens patriae (substitute parent) power
of the states, thus effectively limiting civil
unquestionably (had) a constitutional
commitment to those who are dangerous. Sev-
right to receive such individual treat-
eral states have also amended their statutes to
ment as will give each of them a
conform with this position.
realistic. opportunity to be cured or to
The fact that handicapped persons are con-
improve his or her mental condition.
fined to state institutions solely because of their
The purpose of involuntary hospitali-
mental or physical disabilities, coupled with the
zation for treatment purposes is treat-
growing realization that these institutions do
ment and not mere custodial care or
little to improve the lot of such persons, has
punishment. This is the only justifica-
produced a recent upsurge in litigation. In the
tion, from a constitutional standpoint,
last decade, reformers have filed lawsuits chal-
that allows civil commitments to men-
lenging conditions inside residential institutions
tal institutions such as the one in-
and the very existance of the institutions them-
volved here.
selves.
Rouse v. Cameron 373 F.2d 451 (D.C. Cir.
The Wyatt court specified three fundamental
1966) was one of the first cases dealing with the
elements of the right ot treatment: a psychologi-
right to treatment, a concept articulated in the
cally and physically humane environment, quali-
1960's by Dr. Morton Birnbaum. The holding in
fied staff in numbers sufficient to administer
Rouse was that any involuntarily committed
adequate treatment, and individualized treat-
person has a right to treatment (under a Wash-
ment plans. Relief was founded on the right to
ington, D.C., statute which mandated treatment
due process, but the court stated that denial of
for persons committed to public hospitals be-
equal protection and infliction of cruel and
cause of mental illness).
unusual punishment could provide additional
In 1971 the important case of Wyatt v.
grounds.
Stickney focused squarely on inhumane condi-
The Wyatt opinion also emphasized the
tions at three Alabama institutions. The Wyatt
mental patient's right to be treated in the least
court held that
restrictive setting. The implication was that a
person should not be subjected to institutionali-
to deprive any citizen of his or her
zation, which involves extensive curtailment of
liberty upon the altruistic theory that
liberty, if he can be treated while he remains in
the community. The evidence presented to the
*Voluntary patients, on the other hand, do not involve a state
Wyatt court indicated that long-term institu-
deprivation of liberty and so do not appear to raise significant
tionalization in itself leads to deterioration and
legal issues. It must be recognized, however, that many
decreases the chance that an individual will be
"voluntary" patients are effectively coerced by threat of
able to cope successfully in the outside world.
commitment, therefore some of the rights of involuntary
patients are equally applicable to voluntary patients. Courts
While the Wyatt case attempted to remedy
have held that "voluntary" commitment of a child by his or
the inhumane conditions in Alabama institu-
her parents is not truly voluntary commitment.
tions, it did not deal with the underlying
Commitment statutes uniformly fail to provide any concrete
problem: the existence of segregated facilities.
meaning for this operative term. Major legal attack has not
The formulation of elaborate standards for
come on this score.
+325 F.Supp. 781, on submission of proposed standards by
record keeping, staffing ratios, living conditions
defendants, 334 F.Supp. 1341 (1971), enforced, 344 F.Supp.
and disciplinary policies implies the necessity for
373 (M.D. Ala. 1972).
the existence of such institutions. Wyatt never
9
confronted the basic issue of whether any
jury returned a verdict in favor of Donaldson
large-scale, geographically remote, full-time
and assessed both compensatory and punitive
residential institution could beneficially affect
damages against the defendants. The Court of
the lives of its residents.
Appeals for the Fifth Circuit affirmed the lower
There is concern that simply improving the
court finding. Evidence presented at the trial
conditions at residential institutions for handi-
showed that Donaldson's confinement was a
capped individuals will guarantee their con-
simple regime of enforced custodial care, not at
tinued existence. However, serious problems
all unlike the so-called "treatment" programs
would arise if the residents of existing institu-
which thousands of mentally ill, mentally re-
tions were released into the community without
tarded, and other disabled persons currently
any provision for appropriate community ser-
receive in state institutions. Since the evidence
vices. The fact that this might occur has caused
also showed that Donaldson was not, nor had
many institutional personnel and families of the
ever been, dangerous to himself or to others, the
residents to endorse adamantly the continued
Supreme Court did not decide whether a person
existence of institutions while ignoring the
committed on grounds of dangerousness has a
serious violation of rights that residents suffer.
"right to treatment." The Court attacked the
In Welsch v. Likins (373 F.Supp. 487
basic premise of institutionalization; that is, the
(D.Minn. 1974)) the court held that persons
segregation of nondangerous handicapped per-
civilly committed for reasons of mental retarda-
sons: "A finding of 'mental illness' alone cannot
tion had both a statutory and, under the due
justify a state's locking up a person against his
process clause, a constutional right "to adequate
will and keeping him indefinitely in custodial
care and treatment designed to give each person
confinement." The Court held that "incarcera-
a realistic opportunity to be cured or to improve
tion is rarely if ever a necessary condition for
his or her mental condition." Welsch also di-
raising the living standard of those capable of
rected state officials to make good faith efforts to
surviving safely in freedom on their own, or with
place mentally retarded persons in settings that
the help of family or friends." The Court
would be suitable and appropriate to their mental
concluded that even where confinement was
and physical conditions. Although Wyatt enunci-
originally constitutionally justified, it cannot
ated the right to treatment in the least restrictive
continue after the need for confinement no
environment, it did not impose this responsibil-
longer exists.
ity upon state officials as Welsch did.*
In this landmark decision the Supreme Court
The United States Supreme Court was asked
delivered a significant blow to the widespread
to rule upon the issue of whether there exists a
state practice of institutionalizing handicapped
constitutional right to treatment in O'Connor V.
persons. But although it attacked the current
Donaldson (95 S.Ct. 2485 (1975)). The Court
legal and philosophical presumptions justifying
chose not to deal directly with the issue of a
institutional confinement, it did not address the
right to treatment and, instead, addressed the
problem of formulating acceptable criteria for
basic underlying issue: the right to be free from
commitment in those limited cases where it
involuntary institutionalization.
would be legally permissible. Several lower
Mr. Donaldson had been involuntarily con-
federal courts, however, have spoken to pre-
fined in a state mental hospital for 15 years.
cisely this issue, the constitutional standards for
Throughout his confinement, Donaldson re-
civil commitment.
peatedly demanded his release, stating that he
In Lessard v. Schmidt* and Bartley V.
was dangerous to no one and that in any case
Kremens,+ the courts significantly restricted the
the hospital was not providing any treatment for
criteria under which either an adult or a child
his supposed illness. Donaldson brought a civil
can be constitutionally committed to a state
rights action, contending that the superintend-
institutional facility: There must be full proce-
ent and other members of the hospital staff,
dural due process as well as a finding of
named as defendants, had intentionally deprived
dangerousness and a prior exhaustion of all the
him of his constitutional right to liberty. The
*349 F.Supp. 1078 (E.D.Wis.1972), vacated and remanded for
*In Dixon v. Weinberger (D.D.C., Dec. 1975), the court ruled
more specific order, 414 U.S. 473, ordered accordingly, 379
that patients in the District of Columbia have a statutory right
F.Supp. 1376 (1974).
to confinement in the least restrictive facility.
+44 U.S.L.W. 2063 (E.D.Pa., July 24, 1975).
10
less restrictive alternatives. Implementation of
adults who were living together, the Court made
these new commitment standards will probably
clear that such restrictions were within the
result in the institutionalization of far fewer
legislative prerogatives of local governments.
handicapped persons. States must break with the
(Village of Belle Terre v. Borass, 91 S.Ct. 1536
traditional "treatment" model of providing resi-
(1974)
dential programs services in institutions and
Despite the Broad nature of the Court's
return handicapped persons to the community.*
decision, legal advocates have attempted to carve
out exceptions for community-based homes for
The Right to Refuse Treatment and the Right
the mentally disabled. They have argued that,
to be Free From Experimentation
while it may be generally permissible to restrict
the number of unrelated adults who can live
While the right to treatment was gaining
together, application of such a rule to the
substantial recognition, civil liberties advocates
mentally ill is uniquely invidious since this
began to question the propriety of the right in
population often has no other choice but to live
that it implies that if treatment is provided,
in group homes unless they are to be kept in
patients can be denied their liberty. More
important is the right to refuse certain treat-
large hospitals. Likewise, where zoning restric-
tions are applicable to "medical facilities," legal
ment, particularly those thought to be "hazard-
ous" or especially "intrusive," such as psycho-
advocates have claimed that community care
homes are not medical but rather recreational or
surgery, electroshock therapy, aversive be-
education and therefore allowable under the
haviour modification conditioning, and chemo-
zoning ordinances.
therapy. Somewhat related to the issues of the
right to refuse treatment is the question of
While the legal response has not been un-
mixed, several state courts have held that com-
experimentation imposed upon hospitalized
populations. Recent revelations, including those
munity facilities needed are exempt from restric-
regarding the use of LSD on unknowing mental
tive zoning provisions. This is an area, however,
patients, have led to extensive federal regulation,
that seems particularly suited to state legislative
reform.
particularly by HEW, of experimentation on
human populations. The general regulations,
applicable to all experiments involving HEW
The Right to Privacy and Confidentiality
funding, were promulgated in 1974, and require
A person's health status is obviously relevant
careful procedures to insure that participant
to certain jobs. In order to secure this informa-
consent is both voluntary and informed. HEW is
tion about an applicant, employers-particularly
also in the process of promulgating additional
governmental employers-request access to past
regulations to govern especially vulnerable popu-
treatment records. Insurance companies, too,
lations such as the hospitalized mentally ill.
often require a waiver of confidentiality in order
to review records to insure that treatment is
The Right to Live in the Community
necessary and proper.
The development of community-based resi-
Legal challenges to these practices have typi-
dential facilities for those needing some form of
cally rested on the constitutional principle called
sheltered care has often been frustrated by
the least restrictive alternative. This principle
localing zoning ordinances which either restrict
recognizes that even though the government
"medical facilities" from residential neighbor-
may have a legitimate need to know about a
hoods or limit the number of unrelated adults
person's health status, it cannot satisfy this need
allowed to live together in such neighborhoods.
by means that unnecessarily impinge on impor-
Under current legal standards, states and
tant individual rights such as privacy and confi-
localities are given broad latitude in matters
dentiality. Often a current medical examination,
relating to zoning. In a recent Supreme Court
rather than access to past records, may be
sufficient.
case involving a constitutional challenge to a
restrictive zoning ordiance by several unrelated
THE RIGHT TO VOTE
*It is extremely important to remember that the historical basis
for institutionalization has been the notion that handicapped
A long line of United States Supreme Court
persons should be isolated.
cases makes it clear that the right to cast one's
11
ballot is a constitutionally protected right. It is
privacy that exist under the Constitu-
becoming increasingly apparent that persons
tion. (the) right has some extension to
with physical or mental handicaps may not
activities relating to marriage
constitutionally be automatically deprived of
procreation, contraception
family
their rightful vote. It may be leigitimate to limit
relationships
child reading, and
the franchise to those who understand its
educations."
meaning and effect, but there can be no blanket
presumption that persons with any particular
These rights have all been declared by the
handicap are incapable of such understanding. In
United States Supreme Court to be fundamental
some states, residents of an institution for the
rights protected under the U.S. Constitution.
mentally retarded cannot be denied the right to
Unfortunately, in the past these rights have
vote in local or national elections simply by
frequently been denied to handicapped persons.
virtue of their residence in the facility so long as
Marriages have been prohibited or declared
they meet other requirements for voting.
invalid, involuntary sterilizations have been per-
With reference to physically handicapped
formed, and children have been removed from
persons, in Selph v. Council of City of Los
the home, simply because the person involved
Angeles, 390 F.Supp. 58 (1975), the United
happened to have a handicapping condition.
States District Court for the Central District of
The blanket denial to mentally retarded or
California held that the right of voting by
other handicapped persons of the right to marry,
absentee ballot constituted reasonable alterna-
procreate, and raise children is a "permanent
tive for a handicapped person who finds that his
irrebutable presumption" of the type which has
polling place is inaccessible to him. The judge
been condemned by the U.S. Supreme Court.
stated that a handicapped person has a constitu-
In Ohio a judge who had ordered a steriliza-
tional right to vote but no right to insist that
tion operation performed upon a mentally re-
city officials modify all polling places within the
tarded girl, the doctor who performed the
city so as to eliminate architectural barriers. The
operation, the hospital where it was performed,
cost of undertaking such a project would be an
and social and welfare workers who suggested
unfair expenditure of huge amounts of money in
the surgery, were sued for three million dollars
order to benefit a small segment of the total
on the basis that their action had deprived the
population even assuming the city had the
girl of her constitutional rights. Wade v.
ability or right to modify privately owned
Bethesda, 237 F. Supp. 671 (S.D. Ohio, 1971).
structures. Moreover, plaintiffs' demands would
The U.S. District Court for the Southern District
call for the modification of many polling places
of Ohio found that the judge was totally
in precincts in which no disabled persons live.
without authority to order the operation.
One question not dealt with by the court is what
Shortly thereafter the defendants agreed to
the impact its architecutral barriers stand would
settle the case voluntarily for a substantial sum
have on the act of seeking out a notary public to
of money.
notarize an absentee ballot.
In the United States adoption is purely
It should be noted that in voting rights
statutory in nature. To be entitled to adopt a
discrimination cases involving race, federal
person must qualify under the adoption statute.
courts have held that the location and adequacy
In accordance with general statutory require-
of the polling place do have a significant impact
ments, the adopting parents must be of good
on the right itself. Most states allow assistance in
repute and character, be of sound mind and be
the booth for persons who are blind or other-
financially responsible, although affluence is not
wise physically unable to cast a ballot alone.
required. It has been held that the fact that both
parents were deaf and could not speak does not
of itself disqualify them from becoming adop-
THE RIGHT TO MARRY, PROCREATE,
tive parents. While the statute may not expressly
AND RAISE CHILDREN
discriminate, the Agency handling the adoption
considers the handicapping condition of the
The Supreme Court has recognized
putative adopting parent or parents. Meanwhile,
some jurisdictions subsidize the adoption of
"
a right of personal privacy, or a
children who are handicapped in order to
guarantee of certain areas or zones of
encourage a supposedly slow adoption process.
12
RIGHT TO NONDISCRIMINATORY
costs compel such classification, the Supreme
FINANCIAL TRANSACTIONS
Court has stated previously that constitutional
rights cannot be denied merely because their
Prejudicial attitudes often hamper persons
protection will necessitate the expenditure of
with disabilities from obtaining consumer credit
public funds. Similarly, administrative incon-
and mortgage loans. Some states now have
venience is not a compelling interest justifying
enacted laws prohibiting discrimination in the
the exclusion of the physically disabled.
granting of loans or credit on the basis of
It is not difficult to see that handicapped
physical or mental disability (Washington and
people are "saddled with disabilities.' By defini-
California). Usually there are exceptions for
tion, a handicap is a disability. And, in addition
persons adjudged incompetent to handle their
to the physical, emotional or mental impair-
own affairs by an appropriate judicial body.
ment, society places numerous limitations or
Some handicapped individuals, like those who
prohibitions upon handicapped persons. Thus,
are blind and cannot drive, have difficulty in
the disabilities of handicapped individuals are
obtaining personal identification plates which
compounded by the unequal treatment afforded
would be similar to driver's licenses. Such
them; mental, physical, and emotional disabili-
identification facilitates such financial trans-
ties are exacerbated by disabilities legally and
actions as the cashing of checks. There is a move
socially imposed.
for passage of legislation at either the state or
The "political powerlessness" of handicapped
local level to establish a procedure to issue the
persons could be the subject of extensive discus-
required personal identification plates to those
sion. Most mentally handicapped persons are
persons who do not and cannot drive.
denied the right to vote by express provisions in
state constitutions and statutes. All but four
HANDICAPPED PERSONS ARE ENTITLED
states expressly exclude "idiots" and the "in-
TO EQUAL PROTECTION OF THE LAWS*
sane." Several states go further and exclude all
those under some form of guardianship.
Discrimination against the handicapped may
Physically handicapped persons are often pre-
involve a "suspect" classification. The courts
vented from voting by official neglect. Transpor-
have found suspect classifications when the
tation difficulties and architectural barriers at
particular group involved is saddled with such
polling placed (such as narrow doorways, flights
disabilities, subjected to a history of such
of stairs, and revolving doors) make it difficult
purposeful discrimination, or relegated to a
or impossible for those with serious mobility
position of such political weakness as to require
problems to cast their rightful ballots.
special protection. The stigma of inferiority
These and other problems, including restric-
usually attached to such a classification has been
tions upon the right to hold public office, have
the major determining factor in designating
rendered handicapped persons almost totally
classifications as suspect. Handicapped groups
"politically powerless."
historically have been politically weak and frag-
At least one state court has found that
mented, and handicapped persons have been
handicapped persons do merit strict judicial
stigmatized by society with a badge of in-
scrutiny. In, in re G.H. the North Dakota
feriority. The handicapping condition, often
Supreme court declared that under the state
congenial and unalterable, has been analogized
constitution all children had the right to a public
to racial classifications which almost always
school education and that the U.S. Supreme
compel the strict standard of review. Classifi-
Court
cation of the handicapped should similarly
undergo the strictest scrutiny by the courts.
would have held that G.H.'s terrible
If successful in establishing the handicapped
handicaps were just the sort of "im-
condition as a suspect classification, traditional
mutable characteristic determined
arguments offered as justifications by the state
solely by the accident of birth" to
probably would not pass the compelling interest
which the "inherently suspect" classi-
test. While a state might argue that prohibitive
fication would be applied, and that
depriving her of a meaningful educa-
*Burgdorf and Burgdorf, Vol. 15, Santa Clara Lawyer, pp.
tional opportunity would be just the
899-910; Note, Geo. L J at/pp. 1504-1505. (See Appendix IX.)
sort of denial of equal protection
13
which has been held unconstitutional
poor. They have problems as varied as
in cases involving discrimination based
their individual personalities. Yet,
on race and illegitimacy and sex (see
they are today a hidden population
San Antonio Independent School Dis-
because their problems are different
trict V. Rodriguez, 411 U.S. 1
from most of ours. (118 Cong. Rec.
(1973) ).
3320 (1972)).
Historically, handicapped people have been
An important stepping-stone for handicapped
subjected to purposeful unequal treatment of
persons in their rise from the long history of
considerable scope, degree, and duration. Handi-
unequal treatment to a position of equality and
capped individuals have faced and continue to
dignity in our society would be a recognition by
face discriminatory treatment in almost every
the American judicial system that handicapped
facet of life.
persons warrant special judicial proteciton as
"suspect class." Strict judicial scrutiny has al-
The handicapped live among us. They
ready been applied to classifications based on
have the same hopes, the same fears,
handicapping conditions by the supreme court
and the same ambitions as the rest of
of one state, and the issue will undoubtedly be
us. They are children and adults, black
raised in other cases.
and white, men and women, rich and
APPENDIX I
The dictionary defines "handicap" as "a dis-
handicaps. A person can be handicapped for one
advantage that makes achievement unusually
purpose and not for another; for example, the
difficult." When used generically, however,
"six-hour mentally retarded child" is considered
terms like "the handicapped" have a narrower
mentally retarded during the time he or she
meaning, referring to a particular type of "dis-
is in school but copes well and is considered
advantage"- mental, physical, or emotional
"normal" outside the academic environment.
disability or impairment. Thus, a handicapped
In a sense, "handicapped" is an artificial
person is an individual who is afflicted with a
grouping created by the labeling process in our
mental, physical, or emotional disability or im-
society. From the broad spectrum of human
pairment which makes achievement unusually
characteristics and capabilities certain traits have
difficult. It should be emphasized that physical,
been singled out and called handicaps. The fine
mental, or emotional disabilities qualify as
line between "handicapped" and "normal" has
handicaps only if they hinder achievement.
been arbitrarily drawn by the "normal" major-
Moreover, the phrase "unusually difficult"
ity. Frequently, the various disabilities called
makes it clear that the hindrance must be sub-
"handicaps" have nothing in common except
stantial; a slight inconsequential disability or
the label itself:
impairment is not a handicap.
But to be complete, this description requires
Whatever characteristics such individ-
one final element: a social judgment. A person
uals may or may not have had in com-
truly qualifies as handicapped only when he or
mon prior to their classification, it is
she is SO labeled by others. Certain relatively
their involvement in the classification
severe types of impairments, such as blindness,
process that has generated the charac-
deafness, absence or paralysis of arms or legs,
teristics they all share-their social
or serious degrees of mental retardation or of
fate as members of a status category.
mental illness, are nearly always considered
handicaps in our society. Other impairments,
Moreover, a person whose condition need not
such as the absence of a finger or a toe, mild
be a substantial impediment may become "hand-
mental retardation and emotional disturbance,
icapped" if he or she is labeled and treated as
color or night blindness, partial hearing loss, and
"handicapped" by members of society. Edu-
many others, may or may not be considered
cators and psychologists use the term "self-
14
fulfilling prophecy" to describe a process
as in the case of handicapped persons, the label
whereby persons assigned stigmatizing labels
has practical and legal ramifications. Burgdorf
tend to conform to the expectations created by
and Burgdorf, Santa Clara Lawyer, at pp.
such labels. This effect may be magnified when,
857-858.
APPENDIX II
The Declaration on the Rights of Disabled Persons
THE GENERAL ASSEMBLY
1. The term "disabled person" means any per-
son unable to ensure by himself or herself, wholly
MINDFUL of the pledge made by Member States,
or partly, the necessities of a normal individual
under the Charter of the United Nations, to take
and/or social life, as a result of a deficiency, either
joint and separate action in co-operation with the
congenital or not, in his or her physical or mental
Organization to promote higher standards of living,
capabilities.
full employment and conditions of economic and
2. Disabled persons shall enjoy all the rights set
social progress and development,
forth in this Declaration. These rights shall be
REAFFIRMING its faith in human rights and funda-
granted to all disabled persons without any excep-
mental freedoms and in the principles of peace, of
tion whatsoever and without distinction or discrim-
the dignity and worth of the human person and of
ination on the basis of race, color, sex, language,
social justice proclaimed in the Charter,
religion, political or other opinions, national or
RECALLING the principles of the Universal Declara-
social origin, state of wealth, birth or any other
tion of Human Rights,¹ the International Cov-
situation applying either to the disabled person
himself or herself or to his or her family.
enants on Human Rights,2 the Declaration on the
Rights of the Child,3 and the Declaration on the
3. Disabled persons have the inherent right to
Rights of Mentally Retarded Persons,4 as well as
respect for their human dignity. Disabled persons,
whatever their origin, nature and seriousness of
the standards already set for social progress in the
their handicaps and disabilities, have the same fun-
constitutions, conventions, recommendations and
damental rights as their fellow citizens of the same
resolutions of the International Labour Organiza-
age, which implies first and foremost the right to
tion, the United Nations Educational, Scientific
enjoy a decent life, as normal and full as possible.
and Cultural Organization, the World Health Or-
4. Disabled persons have the same civil and poli-
ganization, the United Nations Children's Fund
tical rights as other human beings; paragraph 7
and other organizations concerned,
of the Declaration on the Rights of Mentally Re-
RECALLING ALSO Economic and Social Council reso-
tarded Persons* applies to any possible limitation
lution 1921 (LVIII) of 6 May 1975 on prevention
or suppression of those rights for mentally disabled
of disability and rehabilitation of disabled persons,
persons.
5. Disabled persons are entitled to the measures
EMPHASIZING that the Declaration on Social Prog-
designed to enable them to become as self-reliant
ress and Developments has proclaimed the necessity
as possible.
of protecting the rights and assuring the welfare
6. Disabled persons have the right to medical,
and rehabilitation of the physically and mentally
psychological, and functional treatment, including
disadvantaged,
prosthetic and orthotic appliances, to medical and
BEARING IN MIND the necessity of preventing phy-
social rehabilitation, education, vocational training
sical and mental disabilities and of assisting dis-
and rehabilitation, aid, counselling, placement serv-
abled persons to develop their abilities in the most
ices and other services which will enable them to
varied fields of activities and of promoting their
develop their capabilities and skills to the maximum
integration as far as possible in normal life,
AWARE that certain countries, at their present
*Paragraph 7 of the Declaration on the Rights of Mentally
stages of development, can devote only limited
Retarded Persons states: "Whenever mentally retarded
efforts to this end,
persons are unable, because of the severity of their handi-
cap, to exercise all their rights in a meaningful way or it
PROCLAIMS this Declaration on the Rights of Dis-
should become necessary to restrict or deny some or all of
these rights, the procedure used for that restriction or denial
abled Persons and calls for national and inter-
of rights must contain proper legal safeguards against
national action to ensure that it will be used as a
every form of abuse. This procedure must be based on an
common basis and frame of reference for the pro-
evaluation of the social capability of the mentally retarded
tection of these rights:
person by qualified experts and must be subject to periodic
review and to the right of appeal to higher authorities."
15
and will hasten the process of their social integra-
11. Disabled persons shall be able to avail them-
tion or reintegration.
selves of qualified legal aid when such aid proves
7. Disabled persons have the right to economic
indispensable for the protection of their persons and
and social security and to a decent level of living.
property. If judicial proceedings are instituted
They have the right, according to their capabilities,
against them, the legal procedure applied shall take
to secure and retain employment or to engage in a
their physical and mental condition fully into
useful, productive and remunerative occupation and
account.
to join trade unions.
12. Organizations of disabled persons may be use-
8. Disabled persons are entitled to have their
fully consulted in all matters regarding the rights
special needs taken into consideration at all stages
of disabled persons.
of economic and social planning.
13. Disabled persons, their families and com-
9. Disabled persons have the right to live with
munities shall be fully informed, by all appropriate
their families or with foster parents and to partici-
means, of the rights contained in this Declaration.
pate in all social, creative or recreational activities.
No disabled person shall be subjected, as far as his
or her residence is concerned, to differential treat-
ment other than that required by his or her condi-
The above is a resolution adopted by the United
tion or by the improvement that he or she may
Nations General Assembly, December 9, 1975, on
derive therefrom. If the stay of a disabled person
the report of its Social, Humanitarian and Cultural
in a specialized establishment is indispensable, the
(Third) Committee.
environment and living conditions therein shall be
as close as possible to those of the normal life of a
REFERENCES
person of his or her age.
1. General Assembly resolution 217 A (III).
10. Disabled persons shall be protected against
2. General Assembly resolution 2200 A (XXI), annex.
3. General Assembly resolution 1386 (XIV).
all exploitation, all regulations and all treatment of
4. General Assembly resolution 2856 (XXVI).
a discriminatory, abusive or degrading nature.
5. General Assembly resolution 2542 (XXIV).
APPENDIX III
Federal agencies administering federal assist-
secure voluntary compliance. The length of
ance are authorized to enforce compliance:
time involved and the nature of attempts to
secure voluntary compliance will vary with such
1. Administratively, by termination
matters as the position taken by the recipient
of or by refusal to grant or continue
and the individual recipient's record. A federal
assistance after opportunity for a
agency affected by provisions similar to Sections
hearing and a finding on the record of
503 and 504 does not have unbridled discretion
noncompliance or,
to pursue a source of negotiating voluntary com-
pliance to the exclusion of any ultimate decision
2. By any other means authorized by
on whether to proceed through administrative
law, i.e., granting agency may refer
hearing or to pursue other legal means in order
the matter to the Department of Jus-
to effect compliance. A federal court has held
tice for judicial action.
that where a recipient is unresponsive after a
reasonable time has been allowed it to comply
Before taking enforcement action, notice of
voluntarily, the federal agency concerned must
failure to comply with the requirement must be
proceed with enforcement by one of the five
given by the agency concerned and there must
alternative means. Consistent failures by agen-
be a determination by the agency that compli-
cies to act constitute a dereliction of duty re-
ance cannot be secured by voluntary means.
viewable by the courts. (Adams v. Richardson,
Some effort must be devoted to attempts to
480 F. 2d b 159, at p. 1183 (D.C. Cir. 1973)).
16
APPENDIX IV
Executive Order 11914
April 28, 1976
NONDISCRIMINATION WITH RESPECT TO THE HANDICAPPED IN
FEDERALLY ASSISTED PROGRAMS
By virtue of the authority vested in me by the
(b) If voluntary compliance cannot be se-
Constitution and statutes of the United States of
cured by informal means, compliance with sec-
America, including section 301 of title 3 of the
tion 504 may be effected by the suspension or
United States Code, and as President of the
termination of, or refusal to award or continue,
United States, and in order to provide for con-
Federal financial assistance or by other appro-
sistent implementation within the Federal Gov-
priate means authorized by law, in accordance
ernment of section 504 of the Rehabilitation
with standards and procedures established pur-
Act of 1973 (29 U.S.C. 794), it is hereby or-
suant to this order.
dered as follows:
(c) No such suspension or termination of, or
Section 1.. The Secretary of Health, Educa-
refusal to award or continue, Federal financial
tion, and Welfare shall coordinate the implemen-
assistance shall become effective unless there has
tation of section 504 of the Rehabilitation Act
been an express finding, after opportunity for a
of 1973, as amended, hereinafter referred to as
hearing, of a failure by the recipient of, or appli-
section 504, by all Federal departments and
cant for, Federal financial assistance to comply
agencies empowered to extend Federal financial
with the requirements adopted pursuant to this
assistance to any program or activity. The Secre-
order; however, such suspension or termination
tary shall establish standards for determining
of, or refusal to award or continue, Federal
who are handicapped individuals and guidelines
financial assistance shall be limited in its effect
for determining what are discriminatory prac-
to the particular program or activity or part
tices, within the meaning of section 504. The
thereof with respect to which there has been
Secretary shall assist Federal departments and
such a finding of noncompliance.
agencies to coordinate their programs and activi-
Section 4. Each Federal department and
ties and shall consult with such departments
agency shall furnish the Secretary of Health,
and agencies, as necessary, so that consistent
Education, and Welfare such reports and infor-
policies, practices, and procedures are adopted
mation as the Secretary requests and shall
with respect to the enforcement of section 504.
cooperate with the Secretary in the implementa-
Section 2. In order to implement the provi-
tion of section 504.
sions of section 504, each Federal department
Section 5. The Secretary of Health, Educa-
and agency empowered to provide Federal finan-
tion, and Welfare may adopt rules and regula-
cial assistance shall issue rules, regulations, and
tions and issue orders which he deems are neces-
directives, consistent with the standards and
sary to carry out his responsibilities under this
procedures established by the Secretary of HEW.
order. The Secretary shall ensure that such rules,
Section 3. (a) Whenever the appropriate de-
regulations, and orders are not inconsistent with,
partment or agency determines, upon all the in-
or duplicative of, other Federal Government
formation available to it, that any recipient of,
policies relating to the handicapped, including
or applicant for, Federal financial assistance
those policies adopted in accordance with sec-
is in noncompliance with the requirements
tions 501, 502, and 503 of the Rehabilitation
adopted pursuant to this order, steps to secure
Act of 1973, as amended, or the Architectural
voluntary compliance shall be carried out in
Barriers Act of 1968 (42 U.S.C. 4151 et seq.).
accordance with standards and procedures
established pursuant to this order.
17
APPENDIX V
Consumer advocacy groups believe that:
the duty to affirmatively accommodate the spe-
cial needs of the handicapped. It is a serious mis-
1. an economic impact statement or any
take to confuse any "affirmative action" re-
statement dealing with the costs and benefits of
quirement (such as that in Section 503 of the
Section 504 regulations should not in any way
RehabilitationAct), which does not depend
shape the substance of Section 504 regulations.
upon a shoring of discrimination, with the duty
Such statements, where required, should be
to take whatever steps are necessary, affirmative
treated as only informational. Section 504
or otherwise, as a remedy for proven discrimina-
establishes as a matter of federal law the duty of
tion. This principle applies in all education pro-
all recipients of federal aid not to discriminate
grams, health, social services, employment, and
on the basis of handicapping conditions. That
income maintenance.
law must be enforced and federal agencies must
3. architectural barriers is an issue which is
enforce it. Similarly, a recipient's claim of undue
not severable. It should be dealt with in each
economic hardship in no way diminishes his
functional area. It should be discussed as part of
obligation to comply with Section 504 or the
the concept of "discrimination and the duty to
Federal Government's obligation to enforce it.
accommodate" and ots cuts across all areas of
We believe that the duty not to discriminate
HEW and other federal agency activity.
imposed on recipients of federal aid by Sec-
4. the individual is otherwise qualified if,
tion 504 is unqualified. Discrimination may be
after accommodation has been made so that
found in the failure to accommodate the special
opportunities are equalized, he or she is quali-
needs of the handicapped resulting in the handi-
fied to participate in a federally aided activity.
capped being denied participation in the benefits
If that phrase is not so construed, it negates
of federally aided activity. Where it is a duty to
most of the effect of Section 504. An example
accommodate results.
is the paraplegic for whom some special plat-
2. the regulations must condemn not only
form must be developed to enable him to reach
the failure to treat the handicapped like others
certain production materials in a technical job.
(of, the concept of "color blind"), but also the
He is otherwise qualified, where he is technically
failure to do so results in a denial of their right
qualified to do the work after the accommoda-
to participate in a program. We think that it is
tion for his wheelchair is made. In areas other
confusing to focus the analysis on the distinc-
than employment, "otherwise qualified" means
tion between discrimination and affirmative
that one is eligible to participate in the program
action. In the area of the rights of the handi-
under the eligibility qualifications of applicable
capped, as in the area of the non-English speak-
law.
ing, the duty not to discriminate may involve
18
APPENDIX VI
With respect to the employment rights of handicapped persons, the following chart* is a selective
listing of State statutes:
Some states in which the disabled are covered under Fair
Employment Practices Acts.
California
Nebraska
Connecticut
Nevada
Hawaii
Oregon
Maryland
Rhode Island
Montana
Wisconsin
Some states in which the disabled are covered under gen-
eral civil rights statutes.
lowa
New Jersey
Indiana
New Mexico
Maine
Pennsylvania
Minnesota
Washington
Some states which appear to have particularized statutes
dealing with disabled persons, which may or may not
cover employment activities.
California
South Carolina
District of Columbia
Texas
Florida
Vermont
North Carolina
West Virginia
Oklahoma
*Excerpt from Accent on Living (Spring, 1976).
APPENDIX VII
This decision is reportedly the first one to
education class at a school for physically handi-
rely on Section 504 as a basis for the holding:
capped children.
Mrs. Hairston, however, was unable to attend
Hairston v. Drosick
to Trina at school because she had a baby at
No. 75-0691 CH (S.D. W. Va.)*
home to care for, her own mother was. living in
the household and was totally incapacitated, she
Trina Hairston is a spina bifida child who has
had no driver's license or suitable transportation
a noticeable limp and incontinence of the
to the school, and her continued presence in the
bowels. School officials refused to place her in a
home was necessary because she took telephone
regular classroom unless her mother would go to
orders for her husband, who makes his living by
the school two or three times a day to attend to
delivering loads of coal for heating homes.
Trina. Additional alternatives to school attend-
The Hairstons, after unsuccessful attempts to
ance offered by the defendants were home-
secure Trina's admission to a regular first grade
bound instruction or placement in a special
classroom, filed this suit in the United States
District Court for the Southern District of West
*Excerpt from 1 AMICUS 6 (March 1976).
Virginia. In the suit, the Hairstons alleged that
19
the exclusion of Trina from an educational pro-
regulations to implement Section 504, no such
gram constituted a discrimination based on her
regulations have yet been promulgated. Judge
handicap, in violation of Section 504 of the
Hall, however, recognized that reliance could be
Rehabilitation Act of 1973 (29 U.S.C. Sec. 794)
placed directly on the statute.
which prohibits discrimination against and de-
"To deny a handicapped child access to a
nial of benefits to handicapped persons in any
regular public school classroom in receipt of
program or activity receiving federal financial
federal financial assistace without compelling
assistance. Secondly, the Hairstons contended
educational justification constitutes discrimina-
that Trina had been excluded from a regular
tion and a denial of the benefits of such program
public classroom without written notice and
in violation of the statute," Judge Hall said in
procedural safeguards in violation of the due
his order of January 14, 1976. "School officials
process clause of the 14th Amendment to the
must make every effort to include such children
United States Constitution.
within the regular public classroom situation,"
The court determined that both of the plain-
he wrote, "even at great expense to the school
tiff's contentions were correct, and ordered that
system. (Emphasis added.)
Trina Hairston be admitted immediately to a
regular public classroom. Judge K. K. Hall, who
presided in the case, also ordered that any at-
Socialization Process Imperative
tempt to exclude her be in accord with due
process of law, and that any exclusion be re-
The court also found alternative placement of
viewed by the court itself prior to such action.
handicapped children able to function ade-
quately in a regular classroom unacceptable and
Section 504 Used As Basis
a great disservice to these children. In his order,
Judge Hall remarked, "A child's chance in this
Hairston V. Drosick is significant because the
society is through the educational process. A
major goal of the educational process is the
court concluded that the plaintiff's exclusion
socialization process that takes place in the regu-
from a regular classroom violated Section 504
lar classroom, with the resulting capacity to in-
of the Rehabilitation Act of 1973 which pro-
teract in a social way with one's peers. It is,
vides that:
therefore, imperative that every child receive
"No otherwise qualified handicapped indi-
an education with his or her peers insofar as it
vidual in the United States, as defined in Sec-
is at all possible. The conclusion is further
tion 706(c) of this title, shall, solely by reason
enforced by the critical importance of educa-
of his handicap, be excluded from participation
in, be denied the benefits of, or be subjected to
tion in this society
It is an educational fact
that the maximum benefits to a child are re-
discrimination under any program or activity
receiving federal financial assistance."
ceived by placement in as norman environment
Although the U.S. Department of Health,
as possible."
Education, and Welfare was to have issued
APPENDIX VIII
Friedman, an attorney confined to a wheel-
anteed by the United States and Ohio Consti-
chair, attempted to enter five county buildings
tutions.
in Cleveland, four housing courtrooms. He could
The plaintiff argued that the acts of the
not enter any of them without assistance. He
county commissioners in maintaining barrier-
filed a class action suit in the Court of Common
laden buildings amounted to: denial of access
Pleas for the County of Cuyahoga, seeking a
to the courts, denial of access to a seat of gov-
declaratory judgment as to right to access and
ernment in derrogation of the right of free pe-
injunctive relief. Since the buildings were not
tition, denial of right to travel and freedom
covered by the Ohio architectural barriers stat-
of movement and denial of equal protection in
ute, the legal action was based on rights guar-
that the barriers unjustifiably limited equal
20
employment opportunity. These infringements
sure accessibility in all existing county-owned
on constitutional rights, Friedman asserted,
buildings. The judicially approved consent de-
placed a burden of affirmative action on the
cree also provided that all county buildings con-
county commissioners to provide access to all
structed in the future must conform to acces-
handicapped citizens.
sibility standards.
The lawsuit was resolved by agreement of the
county commissioners to install ramps and in-
APPENDIX IX
Excerpt from:
Burgdorf and Burgdorf, Vol. 15,
Santa Clara Lawyer, pp. 899-910.
The fourteenth amendment forbids a state to
a more carefully tailored classification or by
deny to any person within its jurisdiction the
some less drastic alternative. The rigorous level
equal protection of the laws. If a state has be-
of scrutiny would be invoked when legislation
come significantly involved in the unequal treat-
or some other form of state action (1) contained
ment of its citizens, the discriminatory treat-
classifications which were inherently "suspect,"
ment-whether legislative, administrative, or
such as those based on race or nationality, or
judicial-may be challenged under the equal
(2) affected a "fundamental right" either ex-
protection clause. State activity is subject to
pressly or impliedly guaranteed by the consti-
judicial nullification where it "individuously"
tution, such as the right to vote or to have
singles out one particular group from among
offspring.
those "similarly situated."
A second, less demanding level of judicial re-
On the other hand, nearly all statutes and
view was used when neither condition for strict
regulations employ classifications. Under an
scrutiny was present. This alternative standard,
equal protection analysis, legislatively or admin-
known as the "rational basis" test, upheld the
istratively imposed distinctions will be exam-
classification if it was reasonably related to a
ined in light of their overall purpose. A classi-
legitimate governmental objective. While the
fication is "under-inclusive" when it fails to
burden was upon the state to demonstrate a
include all those who are similarly situated with
compelling interest in strict scrutiny cases,
respect to the general purpose of the law. An
statutory validity was presumed under the
"over-inclusive" classification affects a wider
rational basis test.
range of persons than those whom the particular
When it applied "strict scrutiny," the Court
law may legitimately reach. Some laws contain
generally struck down the challenged state
elements of both under- and over-inclusiveness;
action. Until very recently, use of the rational
but the classification cannot be characterized
basis test meant minimal scrutiny and was an
until after the purpose of the law has been iden-
almost sure tipoff that the Court would uphold
tified.
the classification against an equal protection
Over the years, the Supreme Court has used
attack.
various standards for reviewing state acts which
This two-tiered approach has been criticized
discriminate among classes of citizens. During
as too rigid and mechanistic. Since 1971 the
the Warren era, the burden imposed upon the
Burger Court has shown signs of opting for new,
government to justify such laws depended on
more flexible standards of review. Strict scru-
which of the two levels of scrutiny the Court
tiny, however, continues to be invoked where
employed. The "strict scrutiny" test upheld a
states adopt classifications well established as
classification only if the state convincingly dem-
"suspect." During the past four years, the Court
onstrated that it was necessary to promote a
has added alienage to the "suspect" group,
"compelling" governmental interest. In such
while broadly implying that women and illegiti-
cases, the state was required to rebut the pre-
mate children merit similar consideration.
sumption that its interest could be furthered by
21
SELECTED BIBLIOGRAPHY
12. Handel, "The Role of the Advocate in
Securing the Handicapped Child's Right to
1. Achtenberg, 'Crips,' United to Enforce
an Effective Minimal Education," Vol. 36,
Symbolic Laws; Legal Aid for the Disabled:
Ohio State Law Journal, pp. 349-375.
An Overview," Vol. 4, University of San
13. Klein, "Background Paper on the Civil
Fernando Valley Law Review, p. 161 (Fall,
Rights of the Mentally Ill," (submitted by
1975).
Staff Attorney of the Washington, D.C.,
2. Adler and Gorman, The American Testa-
Mental Health Law Project).
ment, (1975).
14. Laski, "Civil Rights Victories for the Handi-
3. Architectural and Transportation Barriers
capped-I and II," Vol. I, The Social and
Compliance Board, First Report to the
Rehabilitation Record, pp. 15-20, 25032,
United States Congress (November, 1974).
(May and June, 1974).
4. Brakel and Rock, The Mentally Disabled
15. The National Center for the Law and
and the Law, (Revised Edition, 1971).
Handicapped (South Bend, Indiana), "Legal
5. Burgdorf and Burgdorf, "A Historv of
Rights of the Handicapped." (R. Burgdorf,
Unequal Treatment: The Qualifications of
Jr.)
Handicapped Persons as a 'Suspect Class'
16. Note, "Abroad in the Land: Legal Strategies
under the Equal Protection Clause," Vol.
to Effectuate the Rights of the Physically
15, Santa Clara Lawyer, pp. 855-910 (Sum-
Disabled," Vol. 61, Georgetown Law Jour-
mer, 1975).
nal, p. 1501. (July, 1973).
6. Comptroller General of the United States,
17. Presient's Committee on Mental Retar-
"Employment Opportunities In the Federal
dation (1974), Compendium of Law Suits
Government for the Physically Handi-
Establishing the Legal Right of Mentally
capped," (Report to Congress, September
Retarded Citizens, (Edward Lynch).
16, 1974).
18. Raggio, et al, "Equal Access to Public
7. Comptroller General of the United States,
Transportation: The Disabled and the
"Further Action Needed to Make All Public
Elderly," (September, 1975).
Buildings Accessible to the Physically Hand-
19. tenBroek, "The Right to Live in the World:
icapped," (Report to Congress, July 15,
The Disabled in the Law of Torts," Vol. 54,
1975).
California Law Review, p 84 (1966).
8. Diamond, "Winning a Bill of Rights for
20. United States Civil Rights Commission Re-
the Disabled," Vol. 3, Student Lawyer, p.
port, The Federal Civil Rights Enforcement
20, (October, 1974).
Effort, 1974, Vol. VI, "To Extend Fed-
9. Elmes and Herrmann, Handbook of the
erally Financed Assistance," (Nov., 1975).
Legal Rights of Handicapped People (Fed-
21. United States Civil Rights Commission Re-
eral, District of Columbia, Maryland and
port, "The Voting Rights Act: Ten Years
Virginia Laws), President's Committee on
After," (January, 1975).
the Employment of the Handicapped,
22. United States Civil Service Commission,
1976).
"Employment of Handicapped Individuals
10. Farber, "The Handicapped Plead for En-
Including Disabled Veterans in the Federal
trace-Will Anyone Answer"?, Vol. 64, Ken-
Government," (June 30, 1975).
tucky Law Review, pp.99-113.
23. Wald, "The Legal Rights of People with
11. Final Report of Wisconsin's Task Force on
Mental Disabilities in the Community: A
Problems of People with Physical Handi-
Plea for Laissez Faire," Legal Rights of the
caps, (July 19, 1974).
Mentally Handicaapped at p. 1033 (1973).
22
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
PROBLEMS OF THE SEVERELY AND
MULTIPLY HANDICAPPED
Awareness Paper Based on a Paper By
Frederick Fay, Ph.D.
Research Rehabilitation Institute
Boston, Massachusetts
Pub. WHC -- 20
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following council members for their extensive assistance: Dr. Paul Hoffman; Jesse
Brown; Albert Pimentel; Burt Risley; and Ms. Jayne Shover. Special thanks also go
to members of the Technical Review Team: Ms. Marcia Burgdorf, Director,
Developmental Disabilities Law Project; Ms. Eunice Fiorito, Mayor's Office for the
Handicapped, (New York); Dr. James Folsom, Director, Rehabilitation Medicine and
Surgery, Veterans Administration; Lex Frieden, University of Texas; and Ms. Essie
Morgan, Chief, Socio-Economic Rehabilitation and Staff Development, Spinal Cord
Injury, Veterans Administration.
This Awareness Paper was prepared by a subject-matter expert to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This Paper was not intended to be all-inclusive, but
was designed to stimulate discussions.
TABLE OF CONTENTS
Page
Introduction
1
Service Delivery Systems
3
Barriers to Community Life
14
Transportation Barriers
15
Architectural Barriers
17
Geographic Mobility
18
Rehabilitation: Self-Care and Vocational Objectives
19
Appendices
23
Selected\Bibliography
25
INTRODUCTION
related to its objectives and best suited to its
operations. For example, for one of its pro-
Over 10,000,000 of our citizens are con-
grams, the Office of Education defines a person
fronted daily by problems of the greatest magni-
who is severely or multiply disabled as:
tude seldom faced by the rest of our society.
They are our people who have severe or multiple
"One who because of the intensity of
handicaps. In many instances, they are confined
his physical, mental, or emotional
to their apartments, homes or other residences
problems, or combination of such
because physical barriers and the lack of ade-
problems, needs education, social,
quate services enforce their isolation. If they can
psychological, and medical services
leave their homes, more often than not, they are
beyond those offered by traditional
prisoners of their neighborhoods, because the
regular and special educational pro-
public transportation system, accessible to all
grams in order to maximize his full
others, is either too complex for them to
potential for useful and meaningful
negotiate or it is physically inaccessible to them.
participation in society and for self-
They are discriminated against by employers, so
fulfillment."
they seldom earn wages with which to maintain
themselves and/or their families in dignity and in
The Rehabilitation Act defines "severe handi-
decency. Public health, welfare and social service
caps" for vocational rehabilitation purposes as a
programs lack the elements and/or funding that
would enable these 10,000,000 people with
"disability which requires multiple
severe handicaps to achieve maximum functional
services over an extended period of
capacity leading to independence of others in
time and results from amputation,
self care, in mobility and in coping with the
blindness, cancer, cerebral palsy, cys-
other aspects of normal living. And, finally,
tic fibrosis, deafness, heart disease,
social attitudes directed at disability and "the
hemiplegia, mental retardation, men-
handicapped" result in the exclusion of the
tal illness, multiple sclerosis, muscular
disabled from participation in community, cul-
dystrophy, neurological disorders (in-
tural and recreational activities essential to a full
cluding stroke and epilepsy), para-
and complete life.
plegia, quadriplegia and other spinal
How to overcome and how to change these
cord conditions, renal failure, respira-
conditions are the concerns of our citizens with
tory or pulmonary dysfunction, and
severe or multiple handicaps, and should be the
any other disability specified by the
concerns of our entire society.
Secretary in regulations he shall pre-
scribe."
The Severely and Multiply Disabled
The Social Security Act (Title II, Disability
There is no one universally accepted defini-
Insurance and Title XVI, Supplementary Secu-
tion of "severe disability," nor is there con-
rity Income) defines a disabled person as one
who is
sensus as to the bases upon which to develop
such a definition. Some people equate "severe
"unable to engage in any substantial
disability" with certain mental and physical
gainful activity by reason of any
impairments, others with inability to perform
medically determinable physical or
various tasks or engage in specific activities. A
mental impairment which can be ex-
commonly agreed upon definition of "multiply
pected to result in death or which has
disabled" is even more elusive. A simplistic
lasted or can be expected to last for a
definition of "multiply disabled" is having more
continuous period of not less than 12
than one physical or mental disability. Thus
months."
someone who is both deaf and blind, or some-
one who is both cerebral palsied and mentally
or if blind, who has
retarded is frequently labeled "multiply dis-
abled." To compound matters, each of our
"central visual acuity of 20/200 or
public and voluntary health, education, rehabili-
less in the better eye with use of
tation and social programs has its own definition
correcting lens."
1
To qualify for services under The Develop-
rently being done and planned for handicapped
mental Disabilities program an individual must
individuals throughout the Federal government
have a disability
developed and applies the following definition:
"(A) attributable to (i) mental retar-
dation, cerebral palsy, or epilepsy, or
"A handicapped individual is one who
(ii) attributable to other neurological
has a physical or mental impairment
conditions found to be closely related
or condition which places him at a
to mental retardation or to require
disadvantage in a major life activity
treatment similar to that required for
such as ambulation, communication,
mentally retarded individuals; (B)
self-care, socialization, vocational
originated before the individual at-
training, employment, transportation,
tained age 18 and has continued or
adapting to housing, etc. The physical
can be expected to continue indefi-
or mental impairment or condition
nitely; and (C) constitutes substantial
must be static, of long duration, or
handicap to the individual."
slowly progressive."
To qualify under the Direct Loan Program for
This definition excludes conditions of the get-
the Elderly and Handicapped of the Department
sick-get-well variety. It also excludes conditions
of Housing and Urban Development an individ-
which have little or no impact on the individual.
ual must have
It is felt that the very broad definition is
"An impairment which (A) is ex-
necessary for planning purposes. It is intended
pected to be of long duration, (B)
to provide an umbrella under which all programs
with more narrow focus and very particular
substantially impedes his ability to
definitions can be accomodated.
live independently, and (C) is of such
Thus it can be seen that many factors enter
a nature that such ability could be
into the identification of people as "disabled,"
improved by more suitable housing
"severely disabled," and "multiply disabled."
conditions." (Also included are devel-
Among these factors are body impairments, the
opmentally disabled individuals.)
functional limitations resulting from the impair-
For the programs under Titles IV and V of
ments, the environment, education, age, commu-
the Rehabilitation Act of 1973, as amended, a
nity and employer attitudes and, equally if not
handicapped individual is defined as
of greater importance, the self image of the
person with the impairment. People differ in
"Any person who (A) has a physical
their capacities to cope with impairments, and
or mental impairment which substan-
therefore, even between people with identical
tially limits such person's functioning
conditions, the severity of the disability may
in one or more of such person's major
life activities, (B) has a record of such
vary. Moreover, many persons who are blind,
an impairment, (C) is regarded as
deaf, retarded and using wheelchairs object to
having such an impairment."
the stereotyping of all such persons as "severely
disabled."
The programs under Title V of the Rehabilita-
The problems of persons with multiple dis-
tion Act to which this definition applies are
abilities are included among the problems of
designed to (a) expand employment opportu-
persons with severe disabilities. Therefore, for
nities for handicapped individuals in government
this paper the term "severely disabled" will be
and in industry and (b) eliminate barriers in the
used to cover both.
environment which impede handicapped people
in employment, housing and transportation and
Estimates of Severely Disabled Population
(c) prohibit discrimination against handicapped
people in any program or activity receiving
In authorizing the President to call a White
Federal assistance.
House Conference on Handicapped Individuals,
The Office of Handicapped Individuals (of the
the Congress found, among other things, that
Department of Health, Education and Welfare)
"there are seven million children and at least
established by Title IV of the Rehabilitation Act
twenty-eight million adults with mental or
with responsibility for examining what is cur-
physical handicaps."
2
Estimates of the number of disabled individ-
The Urban Institute estimates that by 1984,
uals in the United States vary, as the surveys
the total number of severely disabled and
from which the estimates are derived use differ-
moderately disabled individuals will increase to
ing definitions of disability and survey methods.
38,648,000, of which almost 13,000,000 will be
As a consequence, there are no exact, hard data
severely disabled.*
concerning the number of people who might
make up the "disabled," the "severely disabled"
and the "multiply disabled" population. There is
SERVICE DELIVERY SYSTEMS
great need for the development of a system that
will identify the incidence and prevalence of
Public Service Agencies
severely handicapped individuals in the United
States, as well as other information essential for
The government programs serving people who
planning programs to meet their needs.
are handicapped are extensive and varied, de-
The Urban Institute, in a recent study of
signed to serve different purposes and relying on
individuals with the most severe handicaps asked
different definitions of the concept of disability.
various voluntary agencies to report the "most
Some programs are dedicated exclusively to
severely disabled" incidence and prevalence data
disabled people; others utilize program earmarks
for the population of concern to them. Some of
or components for the disabled. Some are
their responses are set forth in Appendix A.
limited to specific disability groups, while others
Using these and data from other studies, The
are unrestricted in the disabled people they
Urban Institute estimated the number of indi-
serve. Some focus on severely disabled people
viduals with the most severe handicaps in the
alone; others focus on all disabled people. They
United States in 1975 to be over 10,000,000 as
use varying methods in providing their services
follows:
and the extent to which services are provided
varies considerably among the programs.
Noninstitutional population
8,280,000
Prior to 1973, there was no single Federal
Under age 18
180,000
agency responsible for an overall review and
18-64
4,200,000
comprehensive look at the Federal programs and
65 and over
3,900,000
policies affecting disabled people. The Rehabili-
Institutional Population
1,787,000
tation Act of 1973, in recognition of this
Total U.S. population with
deficiency, created The Office for Handicapped
most severe handicaps
10,067,000*
Individuals within the Department of Health,
Education and Welfare, responsible, among
The conditions that account for the greatest
other things for review, coordination, informa-
amount of activity limitation for the severely
tion and planning pertaining to the policies,
disabled group aged 18-64 are: (1) heart condi-
programs, procedures and actities of the various
tions, (2) arthritis and rheumatism, (3) impair-
programs for the physically and the mentally
ment of back and spine (except paralysis), and
handicapped.
(4) mental and nervous conditions. The causes
The Office for Handicapped Individuals sur-
of mobility limitation are disaggregated by
veyed all Federal programs which serve the
smaller age groups. Causes of mobility limitation
handicapped. This study concluded in March,
in the 18-44 age group are: (1) paralysis, (2)
1975, identified 75 programs whose primary
impairment of lower extremities and hips, (3)
misssion is to serve the handicapped; 6 programs
impairment of back and spine, and (4) arthritis.
not exclusvely for the handicapped, but which
For the 45-64 age group, arthritis and rheu-
emphasize service to handicapped individuals;
matism are the leading causes, followed by heart
and 45 programs which serve handicapped
conditions, paralysis and impairments of lower
people on the same bases as others. A tabulation
back and spine.+
of these programs will be found in Appendix A.
Nearly all of the programs identified in
Appendix B as benefitting disabled people also
*Report of the Comprehensive Service Needs Study-The Urban
Institute, Washington, D.C.
Charles S. Wilder, Chronic Conditions and Limitations of Ac-
*Working Paper 0981-02 Modeling and Forecasting Disability
tivity and Mobility 1965-1967, NCHS Series 10, No. 1, Jan-
Information, submitted to the Department of Health, Educa-
uary 1971.
tion and Welfare, June 9, 1975. The Urban Institute.
3
benefit those people who are severely handi-
after meeting basic food, clothing and shelter
capped. Most of the services for the severely
needs. It is essential, therefore, that incentives
handicapped people are in the form of basic
for vocational rehabilitation be built into the
support (income maintenance), health and medi-
income maintenance programs to provide em-
cal care, social services, educational services and
ployment opportunities for all severely disabled
vocational rehabilitation. By far the greatest
people who are or who can become capable of
expenditures are for income maintenance and
working full or part time. It is also essential that
health and medical care. Payments for educa-
the level of the income maintenance payments
tional services, vocational rehabilitation and
be such as to maintain in decency and health
other related and direct services are minimal in
those persons who are dependent upon such
comparison.
help.
The Disability Insurance, the Supplemental
Maintenance of health in general for those
Security Income and the Aid to Families with
who are severely disabled involves attention to
Dependent Children programs under the Social
both conditions which require hospitalization as
Security Act are the major income maintenance
well as minor medical problems. These ongoing
programs for individuals who are severely dis-
health problems may be related to the person's
abled. The first provides monthly cash payments
disability or the problems may be common to
to eligible persons and their dependents, when
all individuals, such as infections, malfunction of
the covered person suffers a physical or mental
certain internal processes, dental problems, etc.
impairment that has lasted, or is expected to
The high cost of medical care is felt by most
last, 12 months or more, and the impairment
Americans, but to a person severely disabled, it
prevents any substantial employment. Supple-
can especially limit access to such care, particu-
mental Security Income is a program of direct
larly if the high cost of medical care is com-
payments to persons over the age of 65, or
pounded by the cost of special transportation.
blind, or totally disabled who, on the basis of
Many persons who are severely disabled will
their monthly income and some resources, are
qualify for either Medicare or Medicaid cover-
below a certain level of support. The Aid to
age. Medicare is a Federal program of uniform
Families with Dependent Children program pro-
benefits to cover the reasonable cost of hospital-
vides financial assistance to families with needy
ization and medical care for the aged and
children where that need is based upon inca-
disabled. The program is authorized by Title
pacity, death, continued absence or chronic
XVIII of the Social Security Act. Persons
unemployment of a parent. Other Federal pro-
eligible include all those over age 65. Beginning
grams providing income maintenance payments,
in 1974, eligibility was extended to include all
compensation and pension payments which
Social Security Disability Insurance beneficiaries
benefit severely disabled people are the Veterans
who have been disabled for two years or more
Administration programs, the Black Lung Pro-
and persons with permanent kidney failure when
gram, the Federal Workers' Compensation Pro-
they need maintenance dialysis treatments or a
grams, Food Stamps and various Federal retire-
kidney transplant. People with permanent kid-
ment programs.
ney failure are among those persons considered
With prolonged and severe disability, the
"severely disabled." Moreover, most are unable
financial resources of the individual so affected
to pay for their life-sustaining dialysis which if
and his family are soon exhausted. Thus, people
done at home will cost over $5,000 per year and
with severe handicaps have fewer resources than
$30,000. per year if done in the hospital.
persons without such handicaps and generally
Medicare under Part B Supplementary Medical
are completely dependent upon the resources of
Insurance (SMI) requires an annual $60 deducti-
an institution or upon payments from income
ble, after which the beneficiary is covered for
maintenance systems for their survival. Often
80% of the allowed charges. Certain prosthetic
these payments are insufficient to meet basic
devices are also covered under this section.
needs. Moreover, the income maintenance pro-
Those enrolled in SMI must also agree to pay the
grams contain provisions that serve as disincen-
monthly premium of $6.30, or have this paid by
tives to employment. For example, the value of
a state welfare agency.* These charges often
certain benefits such as attendant care, Medicare
or Medicaid, can amount to more than the
*Ralph Treitel, "Rehabilitation of the Disabled", Social Security
recipient is able to purchase through his earnings,
Bulletin, Vol. 34, No. 3, March 1971.
4
represent financial barriers to care, particularly
tion, developing with the handicapped person an
in those states that do not pay the monthly
individualized rehabilitation plan, managing the
premium.
arrangements for services, counseling and guid-
For those who qualify by reason of their
ing the individual, staying with that person
yearly income, Medicaid pays many medical
through successful placement on the job, and
expenses, but states' restrictions vary as to who
providing any necessary post-employment serv-
is covered and what kinds of services are paid.
ices to assist in maintaining employment.
An additional problem in Medicaid coverage is
In addition to counseling and guidance, the
the disincentive it represents to seeking and
range of services includes: physical and mental
holding a job. Because the costs of health care
restorative services, such as medical and correc-
for severely disabled persons are so much greater
tive surgical treatment, hospitalization, pros-
than the averge, many find that only the most
thetic, orthotic, and other assistive devices, and
highly paying jobs can provide enough income
physical and occupational therapy; psychologi-
to allow them to cover their own medical costs.
cal services; training, including personal and
Workmen's Compensation, another source of
work adjustment; maintenance; transportation;
financing medical care, covers a wide range of
reader services and orientation and mobility
medical and rehabilitation services to the injured
services for the blind; interpreter services for the
worker. However, some states place statutory
deaf; and post-employment services.
and administrative limits on medical benefits.
The provision of services involves virtually the
Other programs providing medical payments and
full span of community resources. Private
services to the disabled include: the veterans
physicians, public and private hospitals, special-
Administration programs, Maternal and Child
ized clinics, rehabilitation centers, sheltered
Health Services, Community Mental Health Cen-
workshops, public and private educational insti-
ters Champus, Crippled Children Services and
tutions, and employers, are but some of the
the medical component of the Vocational Re-
resources which are regularly drawn into effec-
habilitation program.
tive rehabilitation. Handicapped individuals are
A basic need of many disabled people is to
supposed to be placed in employment consistent
remove economic dependency upon others or
with their capacities and abilities in the competi-
upon income maintenace programs through serv-
tive labor market, the practice of a profession,
ices which help the disabled person achieve
self-employment, homemaking, farm or family
gainful employment or at least partial self-
work, sheltered employment, homebound em-
support. The primary program which delivers
ployment or other gainful work. The essence of
these services is the Vocational Rehabilitation
the vocational rehabilitation program is to ar-
Program. This program operates in all fifty states
range and direct all appropriate resources in a
and in the District of Columbia, Puerto Rico,
coordinated and meaningful way to bring the
Guam, The Virgin Islands and The Trust Ter-
handicapped person to the highest functioning
ritory of the Pacific Islands. Thirty-one of the
level.
state agencies administer both the general and
Vocational Rehabilitation agencies rely on
blind programs, while in twenty-four jurisdic-
rehabilitation facilities for a great proportion of
tions, the general and blind programs are admin-
services. Consequently, the success of the VR
istered separately. Over 11,000 counselors pro-
program is dependent on the growth and effec-
vide services through a network exceeding 1,000
tiveness of rehabilitation facilities which provide
district and local offices.
evaluation, treatment, and training particularly
Eligibility for services is based on a study of
to the severely disabled who could not be
pertinent data sufficient to determine an indi-
effectively rehabilitated without the assistance of
vidual's rehabilitation potential and the ex-
these operations. Facilities include sheltered
istence of a disability constituting a substantial
workshops, comprehensive rehabilitation centers
handicap to employment. Further studies, as
and a variety of centers for the treatment of
necessary, assist counselors and clients in jointly
specific disabilities such as disabilities in speech,
developing the individualized written rehabilita-
hearing, sight and mental retardation.
tion programs, which, in part, specify services to
The legislative base for the Vocational Re-
be provided, and objectives and employment
habilitation Program is The Rehabilitation Act
goals to be achieved. The rehabilitation coun-
of 1973, as amended by The Rehabilitation Act
selor is responsible for the eligibility determina-
Amendments of 1974.
5
The major program established by the Reha-
Until more precise statistical data are avail-
bilitation Act of 1973 is the grant-in-aid pro-
able, it is not possible to state with any degree
gram (Title I) which provides 80% Federal
of accuracy how many of the 10,000,000 people
matching to State Vocational Rehabilitation
with severe disabilities could benefit from and
agencies for expenditures made by those agen-
need vocational rehabilitation services in order
cies under the State Plan for the provision and
to return to work or to engage in work for the
administration of vocational rehabilitation
first time. However, it is reasonable to assume
services. The Federal appropriation in fiscal year
that the number of such people far exceeded the
1975 for the State-Federal program was $680
approximately 116,000 rehabilitated into em-
million, plus $23 million in formula grant funds
ployment by the Vocational Rehabilitation
for innovation and expansion grants. An addi-
agencies in 1975. But the state vocational
tional $132,226,000 was provided to RSA
rehabilitation agencies and the facilities which
through authorizations in the Social Security
they utilize for services will not be able to reach
Act for the rehabilitation of Social Security
and serve increased numbers of severely disabled
Disability Insurance and Supplemental Security
people unless the funds for rehabilitation pur-
Income beneficiaries. Appropriations for discre-
poses are vastly increased. In addition, funding for
tionary grant authorities-research, evaluation,
research, demonstration and training must also in-
training, facilities improvement, and special
crease if the national rehabilitation effort is to be
projects and demonstrations-amounted to
responsive to the needs of the people who are
$58,145,000 in fiscal year 1975. Thus in FY
severely disabled. In a recent study, the Urban In-
1975, the total obligation of Federal funds for
stitute estimated that of the $21.5 billion that
support of vocational rehabilitation programs
was spent to assist the 10-11 million severely dis-
was $893,371,000.
abled people in 1973, less than $.4 billion or about
Program emphasis in 1975 in the basic State
2% of the total budget was spent for vocational
grant program was on provision of services to
rehabilitation services to this group. *
the severely disabled. The allocation of financial
A major concern of consumers and providers
resources in 1975 reflects the importance of
with respect to the vocational rehabilitation
services for the severely handicapped. Of the
system is what is commonly called the "numbers
basic support expenditures approximately $160
game." Potential consumers of VR services who
million (34%) went for rehabilitation of the
have severe disabilities, and who are frequently
severely disabled. Other expenditures for the
ignored because the VR counselor is busy with
severely disabled include: Innovation and Ex-
"easy rehabs," have been quite critical of the
pension grants ($23 million); service projects,
"creaming" that takes place. Even with the
approximately 50% ($6.9 million) of funds
Rehabilitation Act of 1973's priority on the
available; research and development, approxi-
severely handicapped, many VR counselors in
mately 75% ($15 million), and training, approxi-
the field still feel pressure for quantity rather
mately 75% ($8.625 million).*
than quality.
During FY 1975, State vocational rehabilita-
In the Comprehensive Needs Study's survey
tion agencies rehabilitated 324,039 persons, a
of rehabilitation providers the problem of re-
decline of 37,099 and 10.3% below the number
habilitation closures was seen as a major impedi-
of rehabilitations registered in FY 1974
ment to serving individuals with severe handi-
(361,138). The economic recession, inflation
caps. The fact that the VR agency is "required
and greater costs in serving the severely disabled
to rehabilitate the maximum number of disabled
were, undoubtedly, major factors in this decline,
to retain its appropriation and support" is, in
the first year in the past twenty-one years.
great part, what leads to the "inappropriateness
Included in the total of 324,039 rehabilitations
of rehabilitation quotas (stated and implied)
were 115,746 persons (35.7%) who were deemed
imposed upon VR counselors." To correct these
severely disabled. This represents an increase of
major impediments, a policy option is the
1.5 percent over FY 1974, when 113,997 severely
implementation of a weighted case closure sys-
disabled persons were rehabilitated.
tem in VR to provide greater incentive for
working with the severely handicapped.
*Annual Report for FY 1975. Rehabilitation Services Adminis-
tration, Department of Health, Education and Welfare.
*Report of the Comprehensive Service Needs Study, The Urban
+Ibid.
Institute.
6
Whether it makes more sense to "weigh" the
because of injuries or disease incurred or aggra-
difficulty of the case at the end of the rehabilita-
vated in line of duty in active service have top
tion program, upon closure, or at the start of the
priority for admission for treatment of the
program, upon acceptance and evaluation, is an
service-incurred or service-aggravated disability.*
open question. But the introduction of an
The services and benefits provided by the
objective measurement system that takes into
Veterans Administration reach millions of dis-
account such factors as the client's employment
abled veterans. For example, in 1975, 2,220,169
history, economic status, physical functioning,
disabled veterans received disability compensa-
psychological adjustment, and social com-
tion for disability incurred or aggravated while
petency, could properly weigh the counselor's
on active duty, and an additional 1,006,127
efforts.
disabled veterans received disability pensions for
The Veterans Administration and other Fed-
non-service connected disabilities. In that same
eral and State agencies conduct many programs
year, the Veterans Administration received
that provide substantial benefits and services to
2,069,000 applications for hospital care. About
disabled veterans, especially to those veterans
73% of the applicants were accepted for hospital
who are severely disabled. Among these benefits
care, and many others received ambulatory care.
and services are:
The Veterans Administration health care system
in 1975 provided care in 171 hospitals, 213
Comprehensive health and medical care,
outpatient clinics, 85 nursing homes, and 18
including hospitalization, outpatient medi-
domiciliaries. Veterans were also given care
cal treatment, outpatient dental treatment,
under VA auspices in non-VA hospitals and in
and the provision of prosthetic appliances.
community nursing homes. In addition, the VA
Disability compensation and disability pen-
authorized, on a free-for-service basis, visits to
sions.
Nursing home care and domiciliary care.
non-VA physicians and dentists for outpatient
Electronic and mechanical aids and guide
treatment, and supported veterans under care in
8 hospitals, 31 nursing homes, and 38 domicil-
dogs to blinded veterans, including pay-
iaries operated by 31 States.
ment of the cost of training the veteran in
The veteran with a spinal cord injury receives
using the dog.
Vocational rehabilitation and educational
early and special comprehensive care through
the network of Spinal Cord Injury Centers
training.
operated by the Veterans Administration, in
Specially adapted housing assistance for the
selected Veterans Administration Hospitals
severely disabled veteran having distinctive
throughout the country. The Veterans Adminis-
housing needs, such as wide doors to
tration makes great effort to facilitate expedi-
accommodate a wheelchair, ramps instead
tious transfer of veterans with spinal cord injuries
of steps, oversized and especially equipped
from military and VA hospitals to VA hospitals
bathroooms, etc.
Funds for the purchase of an automobile
with the specialized Centers. In 1975, 1,007
and necessary adaptive equipment.
veterans with spinal cord injuries were admitted
Mortgage insurance, property tax abate-
to VA hospitals for the first time, 449 of whom
were admitted within six months of injury. In
ment, and commissary and exchange privi-
1975 the VA hospital, Brockton, MA., activated
leges.
Special allowances for aid and attendance if
a 60 bed Spinal Cord Injury Center, emphasizing
the veteran is so disabled as to require aid
comprehensive physical, vocational and com-
munity oriented rehabilitation. This activation
and attendance of another person.
brought the number of spinal cord injury beds
Special consideration and services in job
to 1,390. Since World War 11 the Veterans
placement.
Administration has had a network of spinal cord
Certain conditions need to be met by the
injury centers, while only in the past three years
veteran to qualify for the services and benefits
described above. For some programs, a qualify-
*Federal Benefits for Veterans and Dependents Veterans Admin-
ing requirement is that the disabling condition
istration, Washington, D.C. This publication describes the
be service connected or be of certain severity.
various programs for veterans and the qualifying conditions.
Annual Report Administrator of Veterans Affairs, Washington,
For example, hospitalization is available to all
D.C. Report on the activities of the Veterans Administration
veterans, but veterans needing hospitalization
for the fiscal year ending June 30, 1975.
7
has such an approach been federally funded for
increase over the numbers SO served during
civilians. While the population of spinal cord
January through June 1974. For the year as a
injured veterans is one-ninth that of the civilians
whole, however, the rehabilitation training pro-
in size, there are currently 14 VA spinal cord
gram decreased in size, with a total of 24,840
injury centers and 10 civilian centers.
veterans in training, 7.9 percent fewer than the
Vocational Rehabilitation is another service
26,974 enrolled in FY 1974. This represents a
of the Veterans Administration which is of
continuation of the decline that has occurred
particular importance for the veteran who is
each year since FY 1972, when the number of
severely disabled. This service is designed to
veterans in rehabilitation training totaled
assist service disabled veterans in need of rehabil-
31,635, the peak for the Vietnam era. Of those
itation to overcome the handicapping effects of
in training, 18,487 were attending colleges and
their disabilities and to prepare for, obtain and
universities, 4,855 were in trade or technical
held productive employment. Through individu-
schools or in special training situations, such as
alized counselling, each veteran is helped to
rehabilitation centers and 1,498 were in on-the-
select a suitable vocational objective and to plan
job and on-the-farm training.
a program of rehabilitation training to achieve
As mandated by law, the extended period of
the goal selected. The VA provides all necessary
eligibility during which seriously disabled veter-
medical, prosthetic and other services and spec-
ans can be provided vocational rehabilitation
ial supplies and equipment for successful rehabil-
terminated June 30, 1975 for most World War II
itation. VA rehabilitation staff maintain contin-
and Korean conflict veterans. Special efforts
uing close contact with the veteran throughout
were made in cooperation with the Rehabilita-
the training to assist as needed. While in training,
tion Services Administration, Department of
the veteran receives a monthly subsistence allow-
Health, Education and Welfare to ensure that
ance in addition to disability compensation. The
those seriously disabled veterans who were
VA also pays the cost of tuition, books and
enrolled in training under the VA program on
supplies to the training facility. On completing
the termination date would be continued in
training, the veteran is helped to secure and
training under the State-Federal program, and
maintain employment in the field for which he
that veterans applying subsequently to initiate
or she is trained.
training would receive sympathetic considera-
During 1975 the eligibility requirements for
tion.
vocational rehabilitation applicable to certain
In 1975, as in the previous year, intensive
service-disabled veterans were liberalized, mak-
outreach and follow-up efforts were directed
ing benefits potentially available to many more
toward encouraging veterans in need of voca-
veterans. Prior to the enactment of Public Law
tional rehabilitation services to participate in the
93-508 veterans having a compensable disability
program and toward ensuring that such partici-
rated less than 30 percent which resulted from
pation culminates in rehabilitation, as evidence
service after the Korean conflict, or during the
by successful employment. As part of this
period between World War II and the Korean
effort, VA continued its collaboration with
conflict, could be provided training under the
National Alliance of Businessmen and the De-
vocational rehabilitation program only if the
partment of Labor in a joint project to identify
service connected disability were found to con-
and assist service disabled veterans in need of
stitute a pronounced employment handicap.
training or employment assistance.
Public Law 93-508 eliminated this requirement
State programs under Title XX of the Social
so that the determination as to need for voca-
Security Act provide a broad range of social
tional rehabilitation is now made on the basis of
services for people who are blind, disabled, and
the same critèria for all veterans otherwise
aged. The stated goals of the program are (a) to
eligible.
help people become or remain economically
Public Law 93-508, as subsequently amended
self-supporting; (b) to help people become or
by Public Law 93-602, also increased the subsis-
remain self-sufficient; (c) to remedy neglect,
tence allowance. for vocational rehabilitation
abuse, or exploitation of children and adults
trainees approximately 22.7 percent over the
unable to protect their own interests; (d) to
rate in effect prior to September 1, 1974. The
prevent or reduce inappropriate institutionaliza-
impact of these liberalizations on the use of
tion by providing community based, home based,
vocational rehabilitation program showed an
or other form of less intensive care; and (e) to
8
secure institutional care when necessary. Eligi-
Many of these private associations initiated
bility guidelines are established by the federal
the earliest programs in the United States for
government. States may include anyone who
handicapped people, and have had long years of
receives cash payments under Aid to Families
continuous service. Among those established in
with Dependent Children (AFDC) or SSI, or
the nineteenth century which are still in opera-
anyone who has an annual income that does not
tion are: The Perkins School for the Blind
exceed 115% of their State's median income as
(1829), The American Association of Instructors
adjusted for family size. Variance in eligibility
of the Blind (1853), The American Printing
requirements by State is not simply the result of
House for the Blind (1858), Gallaudet College-
different median incomes, however. States may
the world's only liberal arts college for the deaf
choose not to offer services to any individuals
(1864), The American Association for Mental
who do not qualify for income maintenance
Deficiency (1876), The National Association of
programs, or they may vary their eligibility
the Deaf (1880), The Alexander Graham Bell
requirements by setting different income limits
Association for the Deaf (1890), The Industrial
for different services or different categories of
Home for the Blind (1893), and The American
beneficiaries or by limiting eligibility for a
Association of Workers for the Blind (1895).
specific service to a specific category of eligible
The first three decades of the twentieth
persons.
century witnessed the establishment of a large
States are free to provide a wide range of
numer of voluntary agencies, including The
services designed to meet the five program goals.
Goodwill Industries of America (1902); The
Examples of the social services that may be
American Lung Association (1904); The Ameri-
provided under Title XX include homemaker
can Leprosy Mission (1906); The National Soci-
services, foster home services, after-school care
ety for the Prevention of Blindness (1908); The
for children, family planning services, chore
National Association for Mental Health (1909);
services for the elderly, emergency shelter ser-
American Cancer Society (1913); The Interna-
vice for runaways, family counseling, transporta-
tional Association of Industrial Accidents Board
tion services, halfway houses, part-time care for
and Commissions (1914); The American Occu-
the elderly and handicapped children, and infor-
pational Therapy Association, The American
mation and referral services. Benefits vary con-
Orthotic and Prosthetic Association and the
siderably among the states, and gaps in services
I.C.D. Rehabilitation and Research Center in
may appeear, since each state is required to
1971; The Menninger Foundation, The National
provide a minimum of only one service directed
Association of Speech and Hearing Agencies and
at each of the stated Title XX goals, and three
The American Legion in 1919; Disabled Ameri-
services for SSI recipients. Types of care settings
can Veterans (1920); The American Physical
are left to the discretion of states as long as they
Therapy Association, The American Foundation
are appropriate to the stated goal in question.
for the Blind, and The National Easter Seal
Society for Crippled Children and Adults in
Private Service Agencies
1921; The National Rehabilitation Association
(1925); and Seeing Eye, Inc., in 1929.
In the United States, there are hundreds of
From World War II to the present, a still
private agencies, associations, fraternal and reli-
larger number of private agencies concerned
gious societies, veterans' groups and self-help
with the problems of disability were established.
and consumer organizations, all having a full or
Among these are hundreds of rehabilitation
partial purpose of serving the needs of people
who are handicapped. Membership in these
organizations total in the hundreds of thous-
ands. Most are national organizations with state
(b) Directory of Organizations of the Handicapped-Massachu
setts Council of Organizations of the Handicapped, Tufts-
or local affiliates; some are purely community
New England Medical Center, Box 337, 171 Harrison
organizations; and a few are international in
Avenue, Boston, Massachusetts 02111
scope.*
(c) Directory of Agencies Serving the Visually Handicapped in
the United States, American Foundation for the Blind, 15
West 16th Street, New York, New York 10011
*(a) Directory of Organizations Interested in the Handicapped
(d) American Annals of the Deaf, 5034 Wisconsin Avenue,
-Committee for the Handicapped-People to People Pro-
N.W., Washington, D.C. 20016
gram, Suite 610 LaSalle Bldg., Connecticut and L Streets,
(e) Encyclopedia of Associations, Gale Research Tower, De-
N.W., Washington, D.C. 20036
troit, Michigan 48226
9
centers and rehabilitation workshops; The Asso-
a vast array of services. They conduct research
ciation of Rehabilitation Facilities; The United
leading to improved health and rehabilitation
Mine Workers of America Welfare and Retire-
practices and techniques. They conduct and
ment Fund which includes an extensive reha-
promote public and professional education pro-
bilitation service as does The Department of
grams in the causes, treatment and prevention of
Community Services of the AFL-CIO; The Inter-
various disabling diseases. They establish training
national Committee Against Mental Illness, The
programs and performance standards for profes-
Epilepsy Founcation of America, United Cere-
sional rehabilitation and other workers looking
bral Palsy Associations, Inc. and other national
to achievement of the highest professional com-
organizations with state and local affiliates and
petency. They meet the special needs of certain
concerned with a specific disability.
disabled people, such as providing braille publi-
The chronology of the establishment of these
cations for people who are blind or teletype-
agencies parallels the historical development of
writers for people who are deaf. They serve as
the country as a whole-a concern in the
advocates for disabled people in promoting the
nineteenth century for the individual who physi-
legislation and other action that is required to
cally was not so rugged a frontiersman as others;
remove employment barriers, architectural and
a concern in the early part of the twentieth
transportation barriers and the attitudinal barri-
century, as the nation become more industrial-
ers that prevent disabled people, in particular
ized, with the disabled worker; a concern in
those who are severely handicapped, from lead-
1918 with the rehabilitation of the soldier and
ing full, productive lives. And, principally
sailor disabled in World War I resulting in
through the more than four thousand rehabilita-
passage of The Soldiers Rehabilitation Act
tion centers and workshops, the provide the
which is the basis for the rehabilitation programs
restorative and rehabilitation services which dis-
for members of the armed forces disabled in
abled people often require to attain their full
World War II, Korea and Vietnam; and in the
functional capacity.
second and third quarters of this century, a
These rehabilitation facilities are of many
concern with all people who are disabled-the
types. They include: the comprehensive rehabili-
young and old-with all aspects of disability and
tation center, the spinal cord injury center, the
with service delivery systems including expan-
rehabilitation workshop, the vocation evalua-
sion of the role of persons with disabilities
tion, and work adjustment center, community
themselves, the "consumers" of service, in the
mental health centers, speech and hearing cen-
planning, delivery and evaluation of the system.
ters, optical aids clinics, halfway houses for the
In recent years persons with disabilities have
mentally ill and for the mentally retarded and
begun to organize themselves as an effective
the activity center. Some of the facilities are
minority seeking their full civil and human
large; some, small. A single facility may serve all
rights. National organizations of the blind and of
disability groups or only those in a selected
the deaf have been strong advocates for years. In
disability category. Some are sponsored and
the past two decades, the Paralyzed Veterans of
operated by public agencies, but most are under
America, The National Paraplegia Foundation,
voluntary auspices. Regardless of its size, spon-
Disabled in Action and others have emerged as
sorship, program emphasis, or client population,
organizations of, by and for the physically
each facility plays an important role in rehabili-
handicapped. State coalitions have developed that
tation, particulárly for the individual who is
cut across as many as 40 disability groups.
severely handicapped.
Within the past two years, many of the national
Rehabilitation facilities draw upon many dis-
consumer organizations and state coalitions have
ciplines for their services. The range of services
joined together to cooperatively solve problems
which may be found in a facility is reflected in
common to all citizens with disabilities. Under
the Rehabilitation Act of 1973, which describes
the umbrella of the American Coalition of
a rehabilitation facility as providing
singly,
Citizens with Disabilities their stated purpose is
or in combination, one or more of the following
"to promote social and economic well-being and
services for the handicapped individuals: (1)
to assure the full exercise of human and consti-
vocational rehabilitation services which include,
tutional rights of citizens with disabilities."
under one management, medical, psychological,
The thousands of private organizations and
social and vocational services; (2) testing, fitting,
facilities concerned with disabled people provide
or training in the use of prosthetic and orthetic
10
devices; (3) prevocational conditioning or recrea-
lated teaching and training which will widely
tional therapy; (4) physical and occupational
disseminate and promote the utilization of the
therapy; (5) speech and hearing therapy; (6)
new knowledge resulting from research findings,
psychological and social services; (7) evaluation
thereby reducing the usual long intervening
of rehabilitation on potential; (8) personal and
delay between the discovery of the new knowl-
work adjustment; (9) vocational training; (10)
edge which will improve rehabilitation method-
evaluation or control of specific disabilities; (11)
ology, management and service delivery systems;
orientation and mobility services to the blind;
alleviate or stabilize handicapping conditions;
and (12) extended employment for those handi-
and promote maximum physical, social and
capped individuals who cannot be readily ab-
economic independence. They institute related
sorbed in the competitive labor market." These
teaching and training which will widely dissemi-
services are rendered with the common objec-
nate and promote the utilization of the new
tives of assisting the handicapped individual to
knowledge resulting from research findings,
function at his maximum physical, personal and
thereby reducing the usual long intervening
vocational level.
delay between the discovery of the new knowl-
As in the past, the private voluntary organiza-
edge and its wide application in practice; assist
tions have a most significant role in all phases of
in preparing and increasing the number of
activity essential to the well-being of disabled
research and other rehabilitation related profes-
people. They work closely with the public
sional and non-professional personnel where
agencies and are the principal suppliers of the
manpower shortages exist; and improve the skills
professional services purchased by the public
of rehabilitation students, professionals, para-
agencies for their clientele. They demonstrate
professionals, volunteers, consumers, parents
new approaches in overcoming problems result-
and other persons involved in the rehabilitation
ing from disability which are adapted and
process through the media of short and long
incorporated by the public agencies in their
term in-service and continuing education pro-
administrative practices. They train and supply
grams including seminars, workshops, course of
the professional people needed in the public and
study, conferences and demonstration-all for
private programs.
the ultimate purpose of favorably impacting and
Often the private voluntary agencies, includ-
improving the effectiveness of those rehabilita-
ing the consumer organizations, receive public
tion services that are assisting handicapped
support for some phases of their activites.
citizens to achieve the most productive life
Continuing public support is essential to the
possible.
survival of these voluntary agencies and to the
The range of research needs with respect to
continuation of the research and the unique
persons with severe disabilities is as broad and
activites which only they can carry out. With
diverse as the problems and needs of the persons
inflation and unemployment, private support of
themselves. One way to summarize the range of
many voluntary agencies is diminishing. A critical
research needs, and research contributions to
issue, therefore, is continuation of public sup-
solving problems, would be to highlight, across
port to these private agencies in amounts which
disability groups, the kinds of discoveries that
take cognizance of increased costs due to infla-
have been made. For example, in medical
tion and to diminishing voluntary support due
research, the discovery of the Salk vaccine has
to inflation and unemployment.
significantly reduced the incidence rate of polio.
The Rehabilitation Research and Training
The discovery of antibiotics have significantly
Centers within various universities and medical
increased the survival rate of paraplegics. In
centers have developed multidisciplinary pro-
rehabilitation engineering research, the work on
grams designed to focus on high priority prob-
reading machines and mobility aids show great
lems of persons with severe and/or multiple
potential for assisting persons who are blind.
disabilities. The RT Centers conduct programs
Advances in telecommunications technology
of research aimed toward the discovery of new
have broadened the social and vocational op-
knowledge which will improve rehabilitation
tions that are open to many persons who are
methodology, management and service delivery
deaf.
systems; alleviace or stabilize handicapping con-
While such a summary of research highlights
ditions; and promote maximum physical, social
the range of research contributions to each of
and economic independence. They institute re-
the various groupings of persons generally
11
considered to have severe disabilities, such a sum-
injury or any disability, can have the major role
mary lacks depth. Therefore, another way to
in the planning, delivery and evaluation of
summarize research contributions is to look in
medical, vocatinal, environmental and indepen-
depth at one particular disability, e.g. spinal
dent living rehabilitation services.
cord injury, and the broad range of investigative
The above, very brief, research summary
efforts that have been conducted. For example,
targeted at one disability group also lacks depth
spinal cord injury is a severe physical disability
due to space limitations. Productive research
for which research has tackled knowledge gaps
related to spinal cord injury has been carried out
in physiological, psychological, biomedical, sex-
in broad range of scientific and professional
ual, educational, vocational and many other
fields: from neurology and psychology to engin-
areas.
eering and architecture.
Results of physiological research have pro-
The extent to which persons with severe
vided the knowledge that now enables a person
disabilities are able to live independently and
who breaks his back or neck to go through the
productively is constrained both by the limited
acute medical phase of this disability free from
accessibility of necessary service resources and
decubitus ulcers (pressure sores) and urological
by large gaps in the knowledge based upon
complications (bladder infections). Research on
which rehabilitative and other service efforts
the necessary elements for a successful rehabili-
depend. The limited resources can be expanded
tative phase have led to the development of the
if and when the public and the government
extremely cost effective spinal cord injury cen-
make the humanitarian and economic commit-
ters. Demonstration projects have documented
ment to providing both a minimum standard of
the economic and social value of such one-stop
living and an equal opportunity to all citizens.
spinal cord injury center at which the rehabilita-
As Clark Abt observed in a recent report (Abt
tion team includes all the professional specialties
Associates: 1965-1975): "In the world of re-
that can help the paraplegic avoid complications
search and development, government social
and return to society's mainstream as soon as
research funds are unusually limited and the
possible.
problems addressed are extremely difficult. The
Biomedical engineering research has led to
federal government annually spends some $200
development of environmental control devices
billion-half the federal budget-on social pro-
for high-level quadriplegics. Thus, a person who
grams for health, education, welfare, employ-
can only use one muscle in his entire body can
ment, housing, crime control, etc., yet spends
now operate a typewriter, telephone, tape re-
only about 1/4 of one percent-$500 million-
corder, microfilm reader, computer terminal, air
on social research and development. Most
conditioner, or virtually any device that can be
growth industries-and government social pro-
controlled by simple electrical switches. Re-
grams are demonstrably a growth industry,
search and demonstration project in the area of
having doubled every five years fro the last
housing alternatives for persons with spinal cord
fifteen-spend from 5 to 10% of their annual
injury have accompanied efforts both to elimi-
revenues for R&D, much more than the 1/4
nate architectural barriers in all residences, as
percent spent by the federal government."
well as to expand the number of centers for
The filling of the gaps in our knowledge base
independent living that provide quadriplegics
in order to better meet needs of persons with
who need personal care assistance, with the
severe disabilities, depends to a great extent on
freedom of choice as to where to live. Research
fiscal resources to carry out necessary research.
and training programs on sexual functining have
helped to eliminate many of society's stereo-
types (e.g. of the paraplegic as "half a man")
Evaluation of Service Delivery Systems
and opened up new options for many persons
with spinal cord injury and their significant
Assessing the relevance of rehabilitation re-
others. Vocational rehabilitation research has
search, the consistency of services from area to
established the wisdom of early referral, individ-
area, the gaps in services from program to
ualized case management, and open-ended, life-
program or the evaluation of services from
time availability of services. Research on con-
individual to individual is a difficult task. So
sumer involvement has uncovered a variety of
many different factors (on which very little hard
methods by which a person with spinal cord
data exist) can influence such assessments. For
12
example, one can say that a low income quadri-
relegated many severely handicapped individuals
plegic gets better medical services in California
to custodial treatment with little or no expecta-
or New York than in some other states with
tion of change. The point is that goals set for
poor Medicaid coverage. One cany say a deaf
this target group should be tailored to the
person needing technical or college education is
potential capacity of each individual and the
better off going to areas where there are
attainment of such goals should be as highly
reasonable programs (e.g. like Gallaudet College
valued as the attainment of more complex goals
or the National Institute for the Deaf).
by higher functioning persons.
One can make many similar statements about
other disabilities, programs and areas. But with
Attitudes Toward Individuals
hundreds of public and private programs in their
with Severe Handicaps
current state of coordination, it is very difficult,
particularly without systematically collected
Individuals with severe handicaps are con-
evaluative data, to make sound assessments.
fronted by three distinct attitudes on the part of
One possibility for significant program evalua-
the general public which have a vital effect upon
tion that is recently receiving considerable atten-
their livelihood, their well-being and their roles
tion is that of consumer evaluation of services. It
in society. These attitudes are indifference,
seems obvious that the person with a severe
discrimination and positive acceptance.
disability frequently knows more about his
Indifference which is related to unawareness,
wants and needs than the health care profes-
uncertainty and apathy accounts for the lack of
sionals around him. He or she is in the unique
concern by the general public, communities and
position, of all potential service-evaluation, to
institutions about the continuation of the many
say whether the provided services met his or her
man-made barriers that prevent severely handi-
needs. While society has long given "lip service"
capped people from achieving and enjoying the
to the idea that people should have a voice in
quality of life available to others in our society.
the decisions that affect their lives, recently a
As long as this indifference continues, severely
few health and rehabilitation providers have
handicapped people will be discriminated against
implemented the idea. For example, the Re-
in renting apartments, in securing employment,
habilitation Act of 1973 puts emphasis of
in securing credit and in having equal access to
consumer involvement in the planning delivery
all aspects of our society. Many will also
and evaluation of rehabilitation services. An
continue to be excluded from their home
option for improving service delivery, then, is to
communities and placed in remote institutions
involve consumers of service in evaluating the
due to a lack of commitment to develop services
services provided and the service providers. For
at the local level.
example, composite client ratings of rehabilita-
Correction of that indifference is basic to the
tion counselor credibility and availability can be
removal of architectural barriers that prevent
used as part of the agencies' performance
disabled people in wheelchairs and others from
appraisal of the counselor. Such measures of
using public buildings, from entering places of
"client satisfaction". can be averaged across
employment, from using banks, department
counselors to get measures of local area or
stores, restaurants, recreational centers and even
regional VR office performance. Similar rating
from entering and leaving their apartments and
systems can involve persons with disabilities in
homes. Correction of this indifference is also
evaluating other public and private agencies, and
essential if the public transportation systems-
in assessing consistency and determining gaps in
buses, trains, planes, subway cars, which now are
service.
inaccessible to severely handicapped people are
There is another important issue regarding
to be made accessible to them.
evaluation of services for the severely handi-
Community indifference is also responsible
capped. Because of the nature of their disability,
for the continued "dumping" of mentally dis-
severely disabled persons may not be capable of
abled persons into remote state institutions.
achieving the same functional goals which we
Though the numbers of persons residing in such
may set for the moderately or mildly handi-
facilities has declined, many severely handi-
capped person. This not to say that the more
capped are still excluded from their communities
disabled are not capable of progressing toward a
because of a lack of commitment to the develop-
goal. To the contrary. For too long we have
ment of services closer to home.
13
Sensitizing communities through public infor-
BARRIERS TO COMMUNITY LIFE
mation programs on the nature of various
disabilities and the needs and rights of the
Efforts on behalf of severely handicapped
handicapped is essential to breaking down the
persons have concentrated on restoration and
attitudinal barriers that set apart handicapped
rehabilitation to the highest level of independent
people in the general public's mind.
functioning, especially toward the goal of self-
Attitudinal barriers must also be reduced in
support. For the severely handicapped, many of
order to allow access by the severely disabled to
whom are not and may never be employable,
small group living arrangements in the commun-
this presents special difficulties. Self-concept
ity. Many of these home-like facilities are
and identity are established through major life
currently prohibited by zoning regulations from
roles and role relationships and the absence of
locating in residential communities.*
work deprives one of a significant source of
Disabled people themselves can contribute
social validation. Without interaction in work,
significantly to the modification of indifference.
where most individuals achieve primary non-
Advocacy groups within the local community,
familial interaction, social isolation and a less-
provision of information on the needs of the
ened self-concept can result.*
handicapped citizen, lobbying for the rights of
In a recent study, The Urban Institute at-
accessibility to local facilities, and increased
tempted to measure the social interaction of
visibility of the handicapped, all offer two-way
severely handicapped persons by asking a num-
educational experience for both groups. Persis-
ber of questions relating to family and social
tent pressure by handicapped individuals and
life. Although an individual may live with family
their advocates in an organized manner can
members, often the dependency created by
create change. The general public will learn to
disability affects self concept-this self-view is
accept the presence of handicapped people in
often diminished by the handicap. The handi-
places of employment, education, commerce,
capping condition distorts the perception of the
entertainment, and recreation.
individual's role within the family. Survey re-
Problems common to all persons with disabili-
sults substantiated the fact that although many
ties are frequently magnified for persons with
handicapped persons have opportunities for so-
severe disabilities. For example, discrimination
cial contacts, they may still be in a state of
in use of public and private facilities is a
social isolation.
problem occasionally experienced by persons
Of the population sampled by The Urban
with a slight limp or thick glasses. But such
Institute, 81 percent resided with family mem-
discrimination is generally much more of a
bers and 65 percent of the sample had at least
problem to a person with speech, mobility, and
one relative living within 10 miles. Nonetheless,
"cosmetic" difficulties as a result of cerebral
participation was quite limited. Respondents
palsy.
were asked about the kinds of social activites
Architectural barriers, like a long flight of
they had engaged in during the last month. The
steps may be an inconvenience to someone using
most frequently occuring activities were visiting
a cane, but they are an impossiblity to someone
with friends or family and shopping. Even with
using a wheelchair.
these activities, 33 percent had not gone outside
The non-handicapped person may have little
their residence to visit family or friends, and 22
difficulty in securing housing in a residential
percent had not been visited in their homes by
neighborhood, but the development of small
family or friends even once during the past
group living arrangements for the severely handi-
month. Other social activities occurred even less
capped in such areas is frequently hampered by
frequently. In one month, 66 percent had not
zoning and other restrictions. Thus the differ-
gone out to a movie, restaurant, or any other
ences in the problems are not so much a
form of public entertainment; 80 percent had
difference in kind but a difference in degree.
not attended PTA, lodge meetings, or other
social or political group meetings; 93 percent
had not done volunteer work; and 94 percent
*Valerie J. Bradley "The Severely Mentally Disordered," paper
prepared for the National Institute of Mental Health.
Comprehensive Needs Study-The Urban Institute, June 9,
*Report of the Comprehensive Service Needs Study, The Urban
1975 Report submitted to The Department of Health, Educa-
Institute, Washington, D.C.
tion and Welfare
+Ibid.
14
had not attended school or vocational training
also valuable for persons who have been isolated
classes. Affiliation with other disabled people
in institutions.
was infrequent. Only one out of ten of the
Because of the limited extent of social inte-
individuals surveyed knew of any groups for the
gration of the most severely handicapped in
disabled, and only one out of ten respondents
particular, they may require compensatory kinds
were members of such groups. Of these, only
of services. The ideal should be wholly inte-
half ever attended meetings or had attended no
grated and accessible facilities for all. However, a
more than once or twice a year.*
need exists for programs and facilities to provide
While these statistics provide a measurement
special opportunities to those handicapped per-
of the kinds of social interaction and activities
sons who lack the skills necessary to be inte-
available to the respondents, they do not give an
grated into routine programming. Special activi-
index of the quality of these social contacts and
ties could be planned and designed in much the
relationships as a factor in the reduction of
same manner as community-based programs for
boredom, loneliness, isolation, and feelings of
the elderly: community centers, self-help organi-
helplessness and dependency.
zations, activities, and transportation. Experi-
In recent years, handicapped people, through
ences would be provided to offer the disabled an
consumer and advocacy groups have become
opportunity to discover areas of competency
more vocal in demanding equality in education,
and grow away from isolation and total depen-
employment, housing and transportation. As a
dency. The development of new skills and
result, their integration into the mainstream of
interests would provide transitional experiences
life and fuller participation in all activities of
and orientation, working toward social adjust-
living is more a reality today than it was 25
ment and inclusion in regular community pro-
years ago. For example, with the development
gramming.*
of special education programs for handicapped
Attitudinal, architectural and transportation
children and the growing emphasis on placing
barriers also prevent handicapped people from
these children in regular shcool systems, today's
receiving their fair share of community spon-
handicapped children are being given greater
sored social, cultural and recreational services.
opportuniteis for developmental experiences.
These and other deterrents must be removed if
The move in recent years to reduce the use of
disabled people are to enjoy as a fundamental
institutional care for the mentally disabled in
human and civic right full participation in the
favor of community-based services has made it
social and cultural aspects of our society.
possible for many such persons to remain in the
community.
TRANSPORTATION BARRIERS
Many adult handicapped persons have been
deprived of daily life experiences by physical
Transportation is a vital element in the
limitations, inadequate schooling, institutionali-
independence of severely handicapped people.
zation, experiences by physical limitations, inad-
The ability of most severely handicapped per-
equate schooling, institutionalization, parental
sons to get medical care, rehabilitation educa-
overprotection, and limited social opportunities.
tion, employment, and recreation depends upon
This deprivation can lead to an inadequate
their ability to get from their homes to other
personality development, passivity, dependence
places. When, because of their own limitations
out of proportion to the degree of disability,
or obstacles in the transportation environment,
and isolation. Social or recreatinal programs can
they cannot reach those places, their potential
alleviate some of these deficiencies to a degree
for improved functioning may be significantly
and provide social interaction and development
reduced. Access to the public transportation
experience which may have been totally or
systems for those severely handicapped who are
partially lacking in earlier years. Resocializa-
mobile has long been denied, more because of
tion programs which focus on the development
the nature of those systems than to the nature
of "coping" skills needed in every day living are
of the individual's handicap. Congress recog-
nized the need to improve the mobility of those
*Report of the Comprehensive Service Needs Study, The Urban
Institute, Washington, D.C.
*Report of the Comprehensive Needs Study, The Urban Insti-
Ibid.
tute, Washington, D.C.
15
with limitations when it enacted the Urban Mass
other transit personnel. For those who have not
Transportation Act, which stated that "
handi-
received such treatment, however, riding mass
capped persons have the same right as other
transit facilities can cause emotional difficulties.
persons to utilize mass transportation facilities
It can also be expensive if the person with
and services
"
epilepsy is forced to leave the scene of the
The physically handicapped-i.e., those peo-
seizure in an ambulance and be charged $50 for
ple in wheelchairs and those using canes and
the trip.*
other special equipment-face a series of archi-
The deaf, blind, and mentally disabled con-
tectural and attitudinal barriers that make
stitute a large percentage of the transportation
transportation on existing systems very difficult
handicapped, and each group. has unique prob-
or impossible. Steps, narrow doorways, and
lems. Deaf people cannot hear arrival and
inaccessible facilities and vehicles are all fairly
departure announcements at airports and train
well-known transportation problems. Significant
or bus stations. The boarding of trains can also
but less well known problems include discrimi-
be a diffcult process for the deaf, since there
natory practices by insurance companies with
are often no signs directing people to the
regard to disabled automobile drivers. Many
appropriate cars. Possible solutions for this
instances are reported of these drivers being
group, then, include large and more numerous
placed in an assigned risk category (where they
video screens at mass transit facilities giving
pay higher rates) when there is no empirical
current information on arrivals, departures, and
evidence that they are poorer risks. In fact, the
delays.+
available evidence suggests the opposite. Con-
Blind people have almost the opposite prob-
siderable press attention has focused on discrimi-
lem in using mass transit facilities. They need
nation by airlines in refusing to fly disabled
frequent travel and departure announcements at
passengers without a medical certificate or at-
each facility. Passengers who are blind would
tendant.
benefit from announcements given during trips
Other barriers prevent people who are physi-
on buses and trains identifying particular streets
cally disabled from using transit systems that
and stations. Those who are blind and partially
have been thought to be well suited to their
sighted waiting at bus stops would also benefit
needs, such as BART, the Bay Area Rapid
from announcements from the driver giving
Transit System in San Francisco. Problems that
route designation and destination. Route time-
the handicapped face on BART include: dif-
tables in braille and relief maps in stations would
ficulties in using the telephones needed to gain
greatly assist the blind in using mass transit
access to the elevators at the stations; lack of
facilities.
secure, out-of-the-way places where people in
The mentally disabled have special problems
wheelchairs can wait; and gaps between the
in using mass transit facilities. Complicated
loading platforms and passenger cars that can
routes and schedules often are beyond their
entrap a cane, crutch, or wheelchair tire. These
comprehension. Persons who have been institu-
situations are not as obvious as the presence of
tionalized for long periods of time are often
steps or narrow doors but can present as much
frightened or confused by these complexities. In
difficulty to many of the transportation-
addition to travel training, the mentally disabled
handicapped. The more subtle aspects of trans-
could use color-coded bus identification
portation handicaps go beyond the system itself.
markers, simplified route schedules showing
One reason for less than the anticipated use of
principal routes and assistance in route planning.
BART is not BART per se, but the fact that
In addition to problems with publc transporta-
there are curbs a block away from a stop.'
tion, many persons who have been institution-
Attitudinal barriers cause transportation
alized are denied driver's licenses by some state
handicaps for others besides those with obvious
laws.
disabilities. Some persons with epilepsy experi-
The effects of medication contribute to the
encing petit mal seizures on buses and trains, for
travel difficulties of some handicapped persons.
example, have reported that they have been
For example, persons receiving kidney dialysis
treated with understanding by bus drivers and
*Report of the Comprehensive Needs Study, The Urban Institute
Washington, D.C.
*Report of the Comprehensive Service Needs Study-The Urban
+Ibid.
Institute, Washington, D.C.
+Ibid.
16
take medication which often has the side effect
likely to improve performance in various roles
of making them dizzy. Although their mobility
and to enhance self-concept.
may be rated as high, they cannot drive because
The transportation needs of the severely
of the dizziness. Furthermore, many cannot
handicapped are an important element in any
stand in line for any period of time. This makes
program which seeks to make this group more
use of public transportation very difficult, since
independent and productive. Yet finding solu-
most bus stops do not have seating facilities and
tions to their transportation problems is a
most buses do not have reserved seating arrange-
complex undertaking, since different types of
ments. This group, then, may require special
severely handicapped individuals require dif-
transportation arrangements, such as dial-a-ride
ferent kinds of transportation. It is important,
vans or taxis, that can reduce their waiting
then, that a wide range of solutions be explored
time.*
and evaluated so that the most effective national
A wide range of alternative solutions is
program options are developed.*
available from inexpensive capital-intensive
modifications of existing transportation systems
ARCHITECTURAL BARRIERS
to the building of a wholly new transportation
system to accommodate the severely handi-
Architectural barriers are the manmade fea-
capped. Mobility training is valuable to indi-
tures of buildings and facilities which impede or
viduals with certain disabilities. Curb modifica-
preclude their use by handicapped people, or
tions; automobile modifications; retrofitting bus
which impede the conduct of effective and
or surface rail systems with a ramp or power lift,
responsive programs.
seating space and tie downs for wheelchairs,
These features of factories, businesses, parks,
driver-training sensitivity to the needs of the
theaters, restaurants, beaches, apartments, etc.
transportation handicapped would be helpful
exist because in the design and planning the
alterations. Regardless of the modifications
needs of handicapped citizens are not con-
made to fixed-route transit systems, there will
sidered. These barriers reflect the indifference
always be some handicapped persons who re-
and lack of awareness by architects, urban
quire door-to-door service such as taxicabs,
planners, builders, and local officials in the
"handicabs", and dial-a-ride. Direct subsidies
design and construction of facilities and effec-
such as income tax credit might assist with the
tively deny handicapped people the right to
extra costs.
work, travel and recreation. Incentives to create
Clearly, there are both economic and non-
a barrier-free environment and to ameliorate the
economic benefits in improved mobility. Many
conditions which exist for the handicapped
handicapped persons would be newly able to
individual in using private facilities have yet to
work, study, and participate in recreational
be addressed.
activities. Other benefits include the reduced
Architectural barriers affect all aspects of
burden of the handicapped on friends and
living and all ages of the severely handicapped;
relatives and other caretakers and the increased
for example, the layout of a kitchen and its
contribution to the community through the
equipment which makes it difficult and some-
activities of many talented and well-educated
times impossible for a handicapped housewife to
handicapped persons. Also of benefit would be
carry out her homemaking responsibilities; the
the reduction of emotional burdens of physical
thoughtlessly designed school and playground
problems on individuals and the entire commu-
which makes it necessary for the young to be
nity, which are often debilitating and inhibit
educated separately and lose contact with
productivity.
friends; steps which prevent an older woman
The psychological benefits to the handi-
with arthritis from going to her church for the
capped individual are also important to consider.
spiritual and social satisfaction it gave her when
The opportunity for increased mobility, if util-
she was able-bodied.
ized, necessarily increases the amount and
The Comprehensive Needs Study's survey of
variety of social contacts, and these contacts are
providers of rehabilitation services asked respond-
ents to indicate to what extent that certain
*Report of the Comprehensive Service Needs Study- Urban
Institute, Washington, D.C.
T Ibid.
*Report of the Comprehensive Service Needs Study-The Urban
Institute, Washington, D.C.
17
services would effectively assist severely handi-
Rehabilitation agencies, public and private,
capped persons in rehabilitation in independent
consumer organizations and other state, county
living programs. Almost all of these providers
and municipal organizations need to take strong
(96 percent) agreed that home modifications
advocacy roles for adequate legislation and other
would be important. However, only 5 percent of
action to bring about barrier-free buildings and
such respondents were actually engaged in pro-
facilities, including housing. In addition, it
viding home modification servic :S. In the same
would be of help to many severely disabled
survey, 89 percent of the rehabilitation pro-
individuals to have a local program giving infor-
viders agreed that "lack of barrier-free housing"
mation on how modifications could be made and
was a significant problem for the severely handi-
on types of devices which assist in performing
capped. Only two other problems on the list of
various household functions. Such a program
potential impediments were agreed to by a higher
could include assistance in finding barrier-free
percentage of providers. Interestingly, both of
housing. Since the bulk of the costs of architec-
those were also barrier problems-"lack of
tural modifications is now absorbed by individ-
barrier-free employment settings" (90 percent)
uals or families, many in the low income
and "lack of usable transportation" (93 percent).
brackets, some sort of financial assistance should
Public Law 90-480, the Architectural Barriers
also be considered.
Act of 1968, requires that all Federal structures
On the broader level, greater enforcement of
as well as those financially assisted with Federal
existing standards for a barrier-free environment
funds be made accessible to the handicapped.
would do much to assist the most severely
The law also stipulates that when public struc-
handicapped. Without accessible homes, offices,
tures undergo extensive alterations, the elimina-
and public buildings and areas, the probability
tion of barriers shall be included as part of the
of the severely handicapped achieving the better
work. Among the barriers to be modified are
quality of life envisioned in the act establishing
stairs, elevator buttons, narrow doorways, re-
the White House Conference on Handicapped
volving doors.
Individuals will be low.
The provisions of P.L. 90-480 as amended by
Another more intangible architectural barrier
P.L. 91-205, appear to be weakly enforced
which confronts the severely disabled is the
partly because some of its language permits large
institutional and forboding nature of the struc-
loopholes. In addition, the law is primarily
tures in which many of the more handicapped
relevant to Federal buildings, while the bulk of
are forced to exist (i.e., state hospitals, nursing
public buildings are State and local structures.
homes, etc.). Such structures are inhospitable
However, it is now generally recognized that the
and counter therapeutic and reinforce the sepa-
biggest problem area with respect to architec-
rateness and isolation of those within-the lack
tural barrier laws is that of compliance.
of resemblance to more normal settings also
Section 502 of the Rehabilitation Act of
contributes to the stigma attached to the se-
1973 created the Architectural and Transporta-
verely disabled and the community's indif-
tion Barriers Compliance Board. A major pur-
ference.
pose of the Board is to insure compliance with
Public Laws mandating accessibility and usabil-
GEOGRAPHIC MOBILITY
ity of the man-made environment by the handi-
capped and elderly. Many of the handicapped
Geographic mobility, the ability to move
look to the Board with great expectation that its
one's place of residence to somewhere beyond a
potential for enforcement of compliance re-
given labor market, is often necessary to gain
quirements will be fulfilled.
access to specialized jobs and educational oppor-
Almost all states have passed laws or taken
tunities, to escape labor surplus areas, to move
official action with respect to the elimination or
along the career ladders of large organizations,
removal of barriers, but here again, action is
or to meet a variety of personal and family
often vague or weak and in only a few states do
needs. Inability to move, especially at the age of
the laws apply to privately constructed buildings
career development and family formation, can
and facilities.*
drastically restrict one's life opportunities. Thus
there is an increasing recognition of the social
*A Survey of State Laws to Remove Barriers, the President's
value of relocation assistance. The United States
Committee on Employment of the Handicapped, Washington,
D.C.
is now the only major Western nation that does
18
not use some form of relocation assistance to
1. They would generate information on pat-
alleviate regional unemployment.*
terns of demand, including the aggregate density
Many individuals who are most severely
of response from a pilot area, and the composi-
handicapped have additional reasons to move.
tion of demand for different kinds of services
They may require or might benefit from condi-
by different users.
tions which exist in only a few locations, such as
2. They would permit the working out of
special medical, therapeutic, or educational
cost-effective methods and procedures suitable
services, sheltered workshops, and jobs or
for replication and the elimination of costly or
schools suited to their individual qualifications
unacceptable features.
and disabilities. They may seek a supportive
3. They would generate more accurate cost
social situation and a safer, more accessible
data.
physical environment with such aids to inde-
4. They would generate a trained, experi-
pendent living as are being created by and for
enced group of potential program adminis-
the physically handicapped in cities such as
trators.
Berkeley, California. Berkeley's Center for Inde-
pendent Living (CIL) for example, in the San
Another method is to extend research into
Francisco-Oakland metropolitan area, benefits
the actual mobility patterns and mobility needs
strongly from the existence of such services as
of the severely handicapped. Also needed is a
Neighborhood Legal Assistance, the manufac-
geographic analysis of the accessibility of
ture, sales and repair of orthopedic supplies, a
present and projected services to the national
pool of potential attendants and readers, a
severely handicapped population. Finally, survey
university, and the regional headquarters of
information on mobility and locational prefer-
various agencies and service organizations where
ence of the handicapped is needed. This infor-
client requests are presented. In a smaller or
mation, when combined with ongoing experi-
regionally less significant metropolitan area,
ence of the pilot program should provide
many of these features would have to be
material for legislative consideration.*
provided internally at considerable cost or
would simply be unavailable.
REHABILITATION-SELF-CARE AND
Efforts to enhance the mobility of the most
VOCATIONAL OBJECTIVES
severely handicapped are likely to appeal most
to certain subgroups: the better educated, espe-
Goals of Rehabilitation
cially those in their early twenties and those
without (or willing to leave) family ties, those of
Rehabilitation has the objective of providing
retirement age with substantial assets or pen-
services for the disabled individual that will help
sions, and young children who are themselves
each such person achieve the fullest potential-
severely handicapped or are dependents of
ities for whatever satisfactions that person wants
handicapped persons. These subgroups are the
in life, and is able to attain. By providing help
ones who would be most likely to move sponta-
toward improvement of functioning and/or
neously if they were not handicapped.
restoration of capacity, it is an important means
People who are severely handicapped are fre-
for increasing independence, dignity, and self-
quently unable to change their locations because
respect. At one end, the maximum attainable
they lack the funds and resources with which to
goal may be progress from bed to wheelchair or
do so. One method of improving their geo-
an increased capacity for self-care. At the other
graphic mobility would be to establish major
extreme, it may be aimed at restoration to paid
pilot projects incorporating both information
employment. The former is often designated as
and direct services. Such projects would con-
"rehabilitation for independent living"; the
tribute in the following ways to any long-term
latter is designated as "vocational rehabilita-
mobility program subsequently adopted:
tion."
Among the 10,000,000 severely disabled indi-
viduals in the United States today, most are
dependent on others for their support or for
*Report of the Comprehensive Service Needs Study-The Urban
Institute, Washington, D.C.
*Report of the Comprehensive Needs Study. The Urban Insti-
+Ibid.
tute, Washington, D.C.
19
assistance in activities of daily living. If they
achieve independence in meeting the normal
were provided modern rehabilitation services,
demands of daily living. Such rehabilitation
millions could live their lives in greater inde-
services that are provided for this purpose are
pendence and with greater dignity. Many of
provided, as a rule, through rehabilitation cen-
these could return to work, or work for the first
ters. Sometimes they are included in institu-
time. Others could learn self-care. In either case,
tional programs; sometimes they will be found
the beneifts from rehabilitation services would
in hospital programs; sometimes they will be
extend not only to the disabled persons alone,
found in homes for the aged or nursing homes.
but to their families and to society as a whole.
Occasionally, there are community programs
For those who return to work lost wages would
which bring these services to the disabled indi-
be restored, industry would regain labor skills,
vidual in his home. Most often the absence of
and there would be new purchasing power and
such rehabilitation programs and services in our
tax revenues in the economy. For those who
communities is the rule rather than the excep-
were freed from constant attendance or depend-
tion.
ency, institutional, disability, income and wel-
A critical issue is how to establish programs
fare costs would often be decreased.
throughout the country that will assure the
provision of rehabilitation services for inde-
Self Care
pendent living purposes to the millions of
severely disabled people who could benefit from
It is not possible to estimate with any
such services.
exactitude the number of severely disabled
people who could benefit from rehabilitation
Vocational Objectives
services which would enable them to meet,
without assistance, the normal demands of daily
It has been demonstrated in thousands of
living-dressing themselves, feeding themselves,
individual instances that severely disabled peo-
taking care of their other personal needs-and
ple, regardless of the severity of their disabilities,
participating in family and community activities.
can compete with their able-bodied peers in all
It is reasonable to assume that they number in
of the professions, in industry, in commerce, in
the millions. They are among the two million
government-in fact in every work situation in
Americans who are homebound-the two million
our society. And yet, they are unemployed in
people who are "so limited by reason of the
far larger numbers proportionately than non-
severity of their physical, emotional, intellectual
handicapped people. Where a certain occupa-
and environmental disabilities that they cannot
tion might be considered as suitable entry jobs
regularly leave their homes with the transporta-
for a young able-bodied person starting a work-
tion normally available to them to participate in
ing career, these are often terminal jobs for
community-based employment social and educa-
people who are severely disabled. While vast
tional activities". They are among the four
amounts of money-in the thousands of millions
million people with severe disabilities who are
of dollars are spent on professional, vocational
65 years of age and over, many of whom are in
and other career training, severely disabled
nursing homes. And they are among the almost
people benefit very little because the facilities
two million of all ages who are in institutions,
are inaccessible, transportation unavailable and
many of whom are young people. Very sub-
the few modifications required to accommodate
stantial numbers of these people could achieve
their conditions are lacking.
either full or a greater degree of independence in
Millions of severely disabled people could
meeting their daily living needs and in engaging
compete on equal basis with their able-bodied
in community and social activities if they were
peers for positions in the competitive labor
given the opportunity to receive rehabilitation
market if they could obtain the rehabilitation
services, attendant care and suitable housing.
services which they need through programs
There is no single nation-wide State-Federal
designed to reach them in their homes, in
program which provides rehabilitation services
institutions, or which otherwise made the re-
to severely disabled people to enable them to
habilitation services readily accessible and avail-
able. The models for such programs are well
*Homebound Rehabilitation: Preparing the Way, Journal of
known and their validity established. For ex-
Rehabilitation, Sept./Oct. 1975.
ample, through one such model people severely
20
disabled and confined to their homes (by rheu-
to their financial limits and cannot, without
matoid arthritis, muscular dystrophy, cerebral
direct public support, meet current needs. Shel-
palsy, multiple sclerosis, rheumatic heart disease,
tered employment both in special workshops
paraplegia and quadriplegia from spinal cord
and in competitive areas needs to be developed
injuries) are earning substantial wages, many
for many individuals who are mentally retarded.
outside their homes, in the information industry
It is estimated that there are at least 400,000
as computer programmers, microfilmers, data
retarded persons living in the community who
entry operators, inspectors and in other related
have the potential to work, but who are now
occupations and skills.
unemployed. There are other individuals with
The techniques for establishing severely dis-
single or multiple severe disabilities who need
abled people in these and in hundreds of other
work under sheltered conditions-an amputee
occupations in competitive industry are known.
with a heart condition for example.
What is lacking and urgently needed are the
Many severely handicapped persons currently
resources with which to establish these special
employed part-time or unemployed, could be
programs in all communities throughout the
employed in the competitive economy if shel-
nation. What is also needed is vigorous enforce-
tered work tailored to their capacities were
ment of existing anti-discrimination legislation,
developed in the competitive work environment.
particularly sections 501, 503 and 504 of the
The few demonstrations that have been devel-
Rehabilitation Act of 1973, as amended which
oped suggest that assisting an employer in
pertain, respectively, to employment of handi-
designing the appropriate work environment is
capped individuals in government, employment
potentially very effective. Under such a pro-
of handicapped individuals by employers under
gram, the employer would be paid by the
Federal contracts and to the prohibition of
government the difference between the value of
discrimination against handicapped people in
the worker's product and the minimum wage or
any program or activity receiving Federal finan-
paid a fixed percentage for certain kinds of
cial assistance.
employed severely handicapped people.
There are some severely disabled people for
In order for sheltered workshops to pay a
whom placement in competitive industry is not
minimum wage to workshop employees, govern-
feasible. These people need and can function
ment wage supplements would be necessary for
well in sheltered work situations. For example,
eligible employees. In addition, consideration
there are 30,000 to 40,000 blind persons in the
would need to be given to legislation and
United States who could benefit from sheltered
support providing for unemployment compensa-
workshop services.* Many of these people in
tion, Social Security, and health insurance cover-
addition to being blind have been further dis-
age for all employees in all sheltered workshops,
abled by cerebrovascular and cardiovascular ac-
as well as inclusion of workshops within the
cidents, cerebral palsy, mental retardation,
National Labor Relations Act. Also, there is
mental or emotional illness, deafness or severe
need to consider amending the Social Security
hearing loss, diabetes, orthopedic disorders in-
Act so that Disability Insurance and Supple-
cluding amputations, tuberculosis, alcoholism,
mental Security Income payments are not
drug addiction, and other disorders. Only
affected by earnings in sheltered workshops or
about 5,000 such blind individuals are cur-
in competitive employment until earnins exceed
rently receiving the rehabilitation and em-
a level that provides an incentive for rehabilita-
ployment services which the sheltered work-
tion. Of equal importance is continuation of
shops have to offer, and these blind people are
health coverage under Medicare or Medicaid for
principally in the 87 workshops (in 36 states)
the beneficiary who is rehabilitated until such
affiliated with the National Industries for the
time as adequate health coverage under another
Blind. Workshops for the blind, like those for
program is provided.
other disabled people, have been supported over
Should a public works program be established
the years through voluntary contributions and
to cope with the current unemployment situa-
philanthropic bequests. They have been strained
tion, adequate provision should be made to
assure that disabled people including the
*Harold Richterman, Services to the Blind: A Community
severely disabled are employed. A public works
Concern, Eleventh Institute on Rehabilitation Services.
program could also provide employment for
(DHEW).
able-bodied persons as readers, interpreters, and
21
attendants, thus increasing the support person-
this ongoing attention and continuity. It is well
nel needed to facilitate independent living.
known that in the absence of such continuity,
many of the severely disabled will "fall between
Advocacy and Continuity of Attention
the cracks" and will be denied those services
which may be crucial to their continued growth
Because many severely disabled persons have
and rehabilitation.
a handicap which will last for a protracted
In addition to case management-and perhaps
period of time or perhaps for their lifetime,
as a part of such a system-there is a need for
there is a critical need for a mechanism which
aggressive advocacy on behalf of the legal and
assures continuity of attention for the course of
human rights of severely disabled persons.
the disability. The severely disabled have a
Though many individuals are perfectly capable
constellation of needs ranging from residential,
of speaking for themselves, others-because of
medical, legal, social, to rehabilitation. Though
mental disability, fear, or lack of knowledge-are
services to meet these needs may be available
unable to secure their rightful entitlements.
from a variety of different agencies, most
Recently, this advocacy has taken the form of
severely handicapped are unable to "negotiate"
litigation to secure rights to education, treat-
the complex bureaucratic structure which is
ment and protection from harm for persons who
responsible for determining eligiblity and de-
have been previously abused, ignored, and dis-
livering service.
criminated against. Advocacy can also be pro-
A system of case management is needed to:
vided by volunteers at the community level who
work in close contact with the severely disabled
1. assure that the disabled person receives his
and assist them in securing services and other
or her needs;
entitlements. Some states have established ad-
2. prepare a comprehensive plan of services
vocacy programs which may either rely on legal
tailored to the individual needs of the severely
or administrative intervention on behalf of the
handicapped person;
severely disabled.
3. monitor the quality of services provided to
All of these approaches are directed to one
insure their continued appropriateness and effec-
end-increasing the visibility of the problems
tiveness
encountered by the severely disabled and
prodding public agencies to respond to such
No one agency is currently accountable for
problems.
APPENDIX A
ESTIMATES OF SEVERELY DISABLED POPULATION
1. The Arthritis Foundation: "Arthritis is
Professional Rehabilitation Workers With the
America's number one crippling disease. Nearly
Adult Deaf: "According to the recent National
3.5 million persons are estimated to be disabled
Census of the Deaf Population (NCDP), carried
by this disease. (1969-1970 Household Interview
out from 1970 through 1973, severely disabling
Survey conducted by the U.S. Public Health
prevocational d'eafness has a prevalence rate in
Survey.) Some 730,000 persons either require
the United States of 2 per 1,000 or, more
assistance in getting around or are confined to
precisely, 203 per 100,000 population. This rate
their houses. (Chronic Conditions and Limita-
is twice the previously estimated rate on which
tions of Activity and Mobility 1965-1967, Vital
rehabilitation services for deaf people have been
Health Statistics Series 10, Number 61,
based. Even more revealing is the fact that the
HEW)."
6-to-16-year-old category contains severely dis-
2. National Association of the Deaf: "Data
abled prevocationally deaf persons at a rate 38
available to the NAD indicates an overall deaf
percent greater than the 25-44-year-old group
population of about two million. About
and 13 percent greater than the 17-24-year-old
400,000 are in need of rehabilitation services.
group, so that even if the general population
Over 100,000 must be considered to be severely
remains constant, the proportion requiring
disabled."
special services will grow rapidly."
22
3. United Cerebral Palsy Associations: In a
the people with chronic conditions are unable to
survey of a sample geographical area with a
carry out major activities due to mental prob-
population of 22-1/2 million, "There are ap-
lems. The National Institute of Mental Health
proximately 8,250 who need or could use some
Biometry Branch is currently conducting a study
community based services." In the total popula-
on chronically mentally ill people."
tion of the United States the number would be
5. Epilepsy Foundation of America: "The
about 80,000 persons. These data do not include
National Institute of Neurological Diseases and
those under age 21 and those in institutions.
Stroke estimates the number of epilepsy-
4. International Committee Against Mental
affected persons in the U.S. to be between 2 and
Illness: "There is no really hard data as to the
4 million, a prevalence rate of between 1 and
number of persons-in terms of either incidence
2%
for each patient with epilepsy who seeks
or prevalence-encompassed within the major
medical care, there are others who go undiag-
categories of mental disorders. Such data as
nosed and still others who hide their disorder
exists are usually extrapolations of limited and
"It has been estimated that there are currently
usually unrepresentative epidemiological studies
1,157,300 children under fourteen in the epi-
in specific communities, for example, the Mid-
lepsy population of the United States
with
town Manhattan Study, or are based on standard
an expected 1970-1980 increase of 446,000
institutional reports from a number of federal
patients in this age group
"Fifteen to
and state agencies giving statistics on admissions,
twenty percent of the epilepsy population
readmissions, discharges, etc. from such facilities
(have) seizures (which) cannot be controlled by
as Veterans Administration hospitals, state and
currently available methods."
county mental hospital, private psychiatric facil-
6. Muscular Dystrophy Associations of
ities, community mental health centers, psychi-
America: "Over 200,000 men, women and chil-
atric departments of general hospitals, out-
dren from all walks of life are severely crippled
patient clinics, and similar service units.
because of progressive muscular dystrophy and
Judgements as to service needs and anticipated
related muscular disorders."
functional capacity of the physically disabled-
the blind, deaf, paraplegics, etc.-although
7. The Easter Seal Society: "It is estimated
taking into account the derivative psychological
that at least 500,000 people in the United States
concommitants of such disabilities-are generally
now have multiple sclerosis and related dis-
eases."
less complex than parallel judgements required
to be made for the psychiatrically disabled.
8. Cystic Fibrosis Foundation: "While it is
Mixed impairments, i.e., alcoholism and mental
difficult to document incidence and prevalence,
disorder, drug abuse and mental disorder, fur-
since the disease is not reportable and because
ther complicate the problems of developing
its manifestations are often mistaken for those
effective and appropriate means of rehabilitative
of other disorders, there are believed to be
intervention.'
approximately 40,000 individuals with cystic
The National Association for Mental Health:
fibrosis
incidence is estimated at one in
"How many people are we talking about? We
every 1,500 live births."
don't know. The services are disconnected, and
9. National Association for Retarded Citi-
control dispersed; there is no uniform reporting
zens: "Using the 3% prevalence of mental
system. Furthermore, their impact on society is
retardation, we would estimate that there are
far in excess of their numbers. Witness the
6,100,000 mentally retarded persons in the
recent statewide scandals in New York and
United States. We further estimate that 89% of
California. Many receive attention only from the
5,500,000 fall within the mild and moderate
police, courts and correctional systems. The
ranges of mental retardation. Thus, we can
1957 Commission on Chronic Illness reported
assume that 5,500,000 mentally retarded per-
109 in every 1,000 people have a mental
sons are in need of a vast array of services.
disorder, 49% of the people entering state
Included among these services is the need for
mental hospitals have been there at least once
vocational training and employment oppor-
before. The more often patients have been
tunities."
admitted to a mental hospital, the more likely
"According to definitions in the Rehabilita-
they are to return in the future. The National
tion Act of 1973, all mentally retarded persons
Center for Health Statistics reports that 10% of
would be considered 'severely disabled.' With
23
regard to our own definition, we would estimate
sight each year. The National Center for Health
that approximately 11% of the mentally re-
Statistics estimates the number of persons with
tarded persons in the United States fall within
severe visual limitations at about 1,000,000
the severe and profound ranges of mental
throughout the country. It is also estimated that
retardation. Thus, 671,000 mentally retarded
nearly half the U.S. population suffers from a
persons would, using our own definition, be
visual disability that require corrective lenses.
classified as 'severely disabled.'
It is generally agreed that in the "blind" and
10. The National Society for the Prevention
"severe visual limitations" group, more than 50
of Blindness estimates that there are approxi-
percent and perhaps in excess of 60 percent are
mately 475,200 blind persons in the United
60 years of age and older.
States today and that 34,000 persons lose their
APPENDIX B
INDEX. OF AGENCIES SERVING HANDICAPPED INDIVIDUALS
Federal Agencies in DHEW
Relationship to Persons
Who are Handicapped
NAME OF AGENCY
PRIME
SECONDARY
SAME AS OTHERS
Mental Retardation Program
X
Center for Studies of Schizophrenia
x
Division of Mental Health Serv. Programs
X
Mental Health Serv. Dev. Branch
X
Comm. Mental Health Servs. Support Br.
X
Maternal & Child Health Serv./PHS
X
Crippled Children's Services/PHS
x
Maternity & Infant Care Prog./PHS
x
Family Planning Programs/PHS
X
National Health Serv. Corps./PHS
X
Community Health Services/PHS
X
Migrant Health Program/PHS
X
Health Maintenance Organizations/PHS
X
Maternal & Child Hlth. Research/PHS
X
Maternal & Child Hlts. Training/PHS
X
Indian Health Services/PHS
X
Indian Health Facilities/PHS
x
Div. of Hospitals & Clinics/PHS
X
Div. of Fed. Emp. Health
X
Bureau of Prisons Med. Prog./PHS
X
Handicapped Research & Demon./OE-BEH
x
Handicapped Innovative Prog. Deaf-Blind
Center/OE-BEH
X
Handicapped Early Childhood Ass./OE-BEH
X
HC P.E. & Rec. Research
X
HC P.E. & Rec. Training
x
HC Preschool & School Programs
X
HC Regional Resource Centers
X
HC Teacher Education
X
24
Federal Agencies in DHEW (Continued)
Relationship to Persons
NAME OF AGENCY
Who are Handicapped
PRIME
SECONDARY
SAME AS OTHERS
HC Teacher Recruitment & Info.
X
Spec. Prog. for Children with SLD
X
Regional Education Programs
X
HC Media Services & Capt. Films
X
Severely Handicapped Projects
X
Basic Grants to States for Voc. Tech.
Educ./)E-BOAE
X
Project Head Start/OCD
X
Office of Veterans Affairs/OHD
X
Office of Volunteer Dev./OHD
X
Architectural & Trans. Bar. Com. Board/OHD
X
Admin. on Aging/OHD
X
Grants for St. & Comm. Prog. on Aging
X
Office of Planning & Eval.
X
Nutrition Prog. for the Elderly
X
Nursing Home Interests Staff
X
Off. of Native American Programs
X
Rehab. Basic Support Program/OHD
X
Spec. Proj. for the Severely HC
X
Spec. Fed. Resp. Fac. Imp. Grants
X
Basic Support Program-Construction &
Establishment of Rehab. Fac.
X
Spec. Fed. Responsibilities-Construction of
R/F
X
Special Fed. Resp.-Initial Staffing Grants
X
Voc. Training Services Grants
X
Spec. Fed. Resp.-Project Dev. Grants
X
Spec. Proj. & Demon.-Tech. Assistance
X
Projects with Industry
X
Sheltered Workshop Study
X
Comp. Social Rehab. Research
X
Randolph-Sheppard Vending Fac. Prog.
X
Rehabilitation Training
X
Dev. Dis. Spec. Proj. (Hosp. Imp. & VR)
X
DDD Univ. Aff. Fac. Demon. & Training
X
Developmental Dis. Formula Grant Prog.
X
Medicaid/SRS-MSA
X
Public Assistance-Social Serv./SRS-CSA
X
Assistance Payments Adm.
X
Office of New Programs/OCR-OS
X
Disability Ins. Prog./Soc. Sec. Adm.
X
Office for Handicapped Individuals
X
25
Independent Agencies
Relationship to Persons
NAME OF AGENCY
Who Are Handicapped
PRIME
SECONDARY
SAME AS OTHERS
Community Services Administration
Community Action Agencies
X
Veterans Administration
Selective Placement Program
X
Audiology and Speech Pathology
X
Blind Rehabilitation Program
X
Prosthetic and Sensory Aids
X
Multidisciplinary, Multifaceted Program
of Mental Health
X
Spinal Cord Injury Service
X
Pension for Non-Service Connected
Disability for Veterans
X
Adaptive Equipment
X
Specially Adapted Housing for Disabled
Veterans
X
Compensation for Service Connected
Disability
X
VA Vocation Rehabilitation
X
Veterans Housing: Direct Loans for
Disabled Veterans
X
War Orphans and Widows
Educational Assistance
X
Four other VA programs
X
ACTION
Foster Grandparent Program
X
Retired Senior Volunteer Program
X
Senior Companion Program
X
SCORE/ACE
X
Volunteers in Service to American (VISTA)
X
General Services Administration
Purchase of Products and Services of the
Blind & Other Severely Handicapped
X
Personal Property Donations
X
Disposal of Suplus Real Property for
Health & Education Purposes
X
Concession Stands for the Blind
X
Removal of Architectural Barriers
X
National Aeronautics and Space
Administration Medical and Health
Related Research & Development
X
Occupational Safety and Health Review
Commission
X
Small Business Administration
Handicapped Assistance Loan Program
(HAL-1)
X
Handicapped Assistance Loan Program
(HAL-2)
X
26
Independent Agencies (Continued)
Relationship to Persons
NAME OF AGENCY
Who are Handicapped
PRIME
SECONDARY
SAME AS OTHERS
Economic Opportunity Loans
X
Regular Business Loans
X
U.S. Civil Service Commission
Office of Selective Placement Programs
X
Interagency Committee on Handicapped
Employees
X
Personnel Research & Development Center
X
Other Federal Departments
Relationship to Persons
Who Are Handicapped
NAME OF AGENCY
PRIME
SECONDARY
SAME AS OTHERS
Dept. of Agri.-Extension Serv.
X
Dept. of Commerce
Natl. Tech. Unf. S.
X
Soc. & Econ. Statistics Admin.
X
Econ. Devel. Admin.
X
Dept. of HUD
Direct Loan Program for the Elderly &
Handicapped
X
Special User Research/0/R&D-HUD
X
10 Other HUD Programs
X
Dept. of Interior
Bur. of Indian Affairs/O. of Educ. Prog.
X
Dept. of Labor
Off. of Veterans Re-emp. Rights
X
Bureau of Apprenticeship & Training
X
USES-Ser. To H&D Veterans
X
Emp. Stand. for Handicapped Wkrs.
X
Off. of Wkrs. Comp. Prog.-Fed. Emp.
X
Off. of Wkrs. Comp. Prog. Longshore &
Harbor Workers
X
Off. of Wkrs. Comp. Prog. Div. of
Coal Mine Wkrs. Comp.
X
Off. of PD & Acctabil-for S/Wkshp. Spec.
Wage Standards
X
Sub-Min. Wage Cert. of HW
X
Emp. Standards Adm. Woman's Bur. Fair
Labor Standards Act
X
27
Other Federal Departments (Continued)
Relationship to Persons
Who are Handicapped
NAME OF AGENCY
PRIME
SECONDARY
SAME AS OTHERS
DOT-OFAA
Air Carriage of the Handicapped
X
Fed. Highway Ad.-Tech. Sharing Program
X
Off. of Driver & Pedestrian
X
Highway Safety Act of 1973
X (3 excep-
Urban Mass Transit Adm.
X
tions)
Dept. of State
Off. of Medical Services
X
28
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
COMMUNITY AND RESIDENTIAL
BASED HOUSING
Awareness Paper Edited By
Lex Frieden
University of Houston
Houston, Texas
Pub. WHC -- 19
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following individuals who have contributed significantly to this document:
Mrs. Marcia Burgdorf, Development Disabilities Law Project,
University of Maryland
Ms. Eunice Firoito, Mayor's (N.Y.C.) Office of the Handicapped
Dr. James Folsom, Rehabilitation Medicine and Surgery,
Veterans Administration
Lex Frieden, Houston University
Mrs. Essie Morgan, Socio-economic Rehabilitation and Spinal Cord
Insury Service, Veterans Administration
This Awareness Paper was prepared by subject-matter experts to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This paper was not intended to be all-inclusive, but
was designed to stimulate discussions.
TABLE OF CONTENTS
Page
Introduction
1
Historical Perspective
1
State of the Art
3
Support Services
6
Housing Alternatives
7
Conclusions
11
End Notes
12
Bibliography
13
Appendices
15
EDITORS NOTE
This paper is not a comprehensive review, critique, or documentary of housing
programs for handicapped individuals in the United States.
The present paper reflects the philosophical bases and some of the system-bound
obstacles which motivate and frustrate the developers of innovative housing
alternatives for handicapped individuals.
There is a growing set of materials which may be useful to anyone interested in the
theory or practice of housing for persons with disabilities. Generally, the most
convenient sources of this information are the major national organizations involved
with handicapped persons, e.g. PCCEH, ATBCB, UCPA, National Easter Seal
Society, etc.
PREFACE
In this paper we will attempt to outline current trends in housing handicapped
individuals with primary emphasis on programs in the United States. We will be
discussing the needs that persons with physical and mental disabilities have in
attempting to secure usable housing. By this, we mean not only the availability of
accessible physical structures and ancillary services which ultimately enable the
person with special needs to live as independently as possible. But, more important
is the belief that all persons with disabilities must be able to select their own
lifestyles. This means that there must be a system established which can meet the
needs of handicapped individuals outside the confinement of specific structures and
environments.
We will review many of the existing laws pertaining to housing and will provide
information to show that the needs of disabled individuals have not been planned
for in a comprehensive manner. We believe that this lack of planning, resulting in
programs being scattered from agency to agency in a patchwork design, has meant
that the majority of persons in need of usable housing have not been able to obtain
it. In addition, we will try to demonstrate that, although millions of dollars have
been spent on programs designed to meet housing needs of handicapped individuals,
sufficient resources have not been directed to those programs. Finally, we contend
that many of the funded programs are inappropriate, as they continue to segregate
persons with special needs.
"The National housing goal" shall be to provide "a decent home and a suitable
living environment for every American family." From the Housing and Community
Development Act of 1974. P.L. 93-383 Sec. 101. (d) (3).
INTRODUCTION
result, persons with disabilities are separated and
placed in large facilities, e.g. housing projects or
The provision for shelter, i.e. housing has
isolated with their families rather than inte-
been a concern of human beings since people
grated within society. Disabled individuals are
first came in out of the rain. The rise of
being denied the opportunity to live as equals.
domestic civilization and cities has led to basic
problems of environmental design. It is only in
this century that attention has been concen-
HISTORICAL PERSPECTIVE
trated on solutions to urban crowding, decay,
and ghettoization. However, "different" people
have continued to be relegated, along with the
Prior to the development of the traditional
poor, to institutions and ghettos. This paper will
institutional model, "deviants" were long
outline the development of separate housing and
grouped together regardless of the nature of
show that programs have not yet met the needs
disability. The insane, blind, epileptic, retarded,
of individuals with disabilities.
etc. were not separated in many people's minds,
Historically, the norms society has established
but sometimes locked up with beggars, paupers,
have resulted in persons with disabilities being
and criminals. This Puritan ethic could include
considered different, special, or unmentionable
"irresponsible mothers, so common in poor
by the "normals." These attitudes have led to the
houses," and related one cause as responsible for
placement of many human beings in unnatural
all these effects.² Perhaps the prison and poor
and repressive environments as well as to the
house were precursors of later institutional
dehumanization of the disabled as if they were
models. Largely, though, public attitude formed
objects. In some cases the idea that a disabled
the prison walls that often barred the "halt"
individual brought luck (hunchback) or had
from employment, made the deaf "dumb" in
magical powers (epileptic) led to an elevated
class, and ridiculed persons who were retarded
image, but no better living situation. Improved
on the street or playground. Daily life was made
housing was only available to those privileged
unaccommodating and no solutions to the prob-
with enough money to provide for all the needs
lems of handicapped persons were offered out-
of a comfortable existence. Without opportunity
side the family.
of self help and control over their lives, people
The first American institutions were located
with disabilities usually found no solutions
centrally in the community and segregated,
provided for their housing problems.
hoping to train and return the "deviant."
Prior to modern science and sociology, per-
sons who lived with paralysis, retardation, men-
tal illness, deformity, or disease found help from
The goal was a combination of
those who loved them, or they struggled on their
diminishing the intellectual impair-
own. Their needs had to be met in their
ment and increasing the adaptive and
immediate community of friends or through
compensatory skills of pupils so that
tremendous personal will to survive. Often the
they would be able to function at
attitudes of society precluded any but peripheral
least minimally in society.
participation in mainstream activities. Ghettos of
societal outcasts were actually an excuse for
dealing with special housing (or socioenviron-
Around 1850, positive attempts were made in
mental) needs.
developmental models, which resulted in a re-
In spite of the fact that many people today
habilitation rate of about ten to forty percent.⁴
survive and overcome great physical mishaps,
However, many residents had no place to return
because of improved medical technology,
to, and some people expected complete and
archaic attitudes still prevail over their lives and
rapid "cures" which did not occur. The nature
environment. "The person with a handicap is
of institutions became custodial, with perma-
frequently perceived as a deviant, and expected
nent care necessary to shelter inmates from
to play a stereotyped role." This negative value
society. During the 1880's and later, the trend
of stigma is perpetuated through the removal
was to economize, isolate, and enlarge facilities.
and isolation form others' experience; people
The prevailing sentiment was one of benevo-
play the roles they have been assigned. 1 As a
lence, though eventually work was emphasized
1
"to provide healthful and attractive occupa-
dropped to $526 per year. Extra design features
tion." The retarded and the mentally ill espe-
were done away with; heat and proper light were
cially were moved to the periphery, out of sight
sometimes considered too expensive! Larger and
out of mind, and "funny farms" were estab-
larger population size was rationalized, with
lished.
proposed enlargements growing from under
The concept of pity behind the growth of
1000 to over 3000 by 1913.
large institutions turned to resentment that
Few voices suggested reversing segregation.
"sufferers" did not get well. "Defectives" began
Education was looked on as worthless in insti-
to be indicted as social ills from which society
tutions as was special education in the com-
must be protected, by the turn of the century,
munity, unless it could be used to identify
the trend was toward no education, assignment
"defectives" for permanent segregation. Mone-
of hereditary causes, and fears that "feeble-
tary support to needy families in the commun-
mindedness" was a factor in vagrancy and
ity, offering the alternative of living outside the
venereal disease, not to say crime and other
institution, was seen as regressive, as was the
"social evils." There were accusations that
eugenic approach of new psychological clinics.
"imbeciles" bred dangerously. Women were
After 1920, it became clear that sterilization
damned for licentious poisoning of the minds
and segregation were clearly not solutions. Com-
and bodies of the moral members of society.
mitment laws and confinement for life were
These indictments were voiced by presidents of
unpopular with the families of the "feeble-
the American Association on Mental Defi-
minded." It was also found that "morons" were
ciency. 6 To end the propagation of the "dis-
not habitual criminals nor were they misbe-
ease," retardation, drastic measures were pro-
havers.⁷ Still the relative insignificance of hered-
posed and tried.
ity as cause of retardation was not known. For a
The inability of the public to view persons
while, registration was proposed with hopes of
with disabilities as human beings led to these
community supervision. Identification and social
individuals being seen as animals. This denigra-
control did not occur. The innovations. tried in
tion led to brutalization and sterilization. From
the period of indictment exhausted the large
1895 preventive marriage laws were passed,
institution as a rational design. However, institu-
some of which are still with us. When legislation
tions did not change, due to a lack of commun-
was ineffective, compulsory sterilization be-
ity commitment and services. The momentum of
came the rule. It, too, was less effective than
indoctrinated attitudes and immutability of
hoped, not preventing as many cases as the the
structures, with the Depression and World War
hereditary theory expected, not being applicable
II, perpetuated the institutional model.
to a wide enough population, and meeting with
Occassionally, small residential facilities with
some moral objections. Further attempts at
appropriate support services were established.
prevention were made through segregation, which
Sometimes affiliated with churches or privately
meant to control mating and procreation by
run, these projects were successful where indi-
quarantine. Whereas discharges from institutions
vidual consideration and tender loving care
had originally been easy, alarmism created man-
predominated. Also, certain projects were de-
datory rules for permanent commitment (start-
veloped from time to time to house groups with
ing in 1915).
specific disabilities, such as the blind or tubercu-
To house the entire disabled population in
lar. These special solutions were limited in scope
institutions required either more money or small
by their dependence on private funds and by
per capita cost, and funds were not forthcoming.
serving segregated groups. Although low budgets
Economic arguments were given for warehousing
may have been managed in some of these
the disabled in as large populations as manage-
models, support services are known not to have
able. The higher-functioning residents were put
been very widespread, and there has been no
to work in the fields, and arguers that institu-
proliferation of efforts at comprehensive pro-
tions could become self-supporting assigned an
grams.
acre per person as requisite size. Reduction of
Despite movements for increased personal
cost entailed strenuous work conditions making
rights and equal protection for many minorities;
some institutions as much as fifty percent
and despite an awakening awareness by the
self-supporting. In the late 1920's per capita
public about the realities of disability and the
costs in publicly supported U.S. institutions
dehumanizing effects of institutions; repressive
2
management, prejudicial practices, and sub-
as great. However, when the move is merely
standard facilities continue to exist in and
made in order to secure some facsimile of
function as institutions.
adequate housing and services, these problems
Since "behavior tends to be profoundly
become more severe. It is not uncommon to
affected by the role expectations placed upon a
hear persons who are elderly or disabled com-
person,"⁸ and since many people believe that
plain that one of thè biggest problems in moving
disability is sickness,⁹ it is no surprise that
to an institution is that they lose their will to
institutions have usually proven unhealthy. In a
live.
study of long term residential facilities, nursing
homes were described as "little more than small,
privately owned hospitals
not
for
the
healthy "10 Two well known disincentives are
treating people as objects and massing "deviants"
STATE OF THE ART
together. An institution treats people as objects
by shuffling individuals around, making them stay
Advances in medical science and health tech-
put, treating them as patients and not as individ-
nology in the last thirty years have "increased
ual human beings. By grouping many disability-
the survival rate of victims of accidents, disease
types with little regard for different classes of
and disability to a near-normal life expectancy
needs and functional abilities, the rehabilitable
and has greatly extended the lifespan of the
get depressed and special needs get glossed
elderly and the infirmed," offering the oppor-
over.
tunity, but not the resources to return as
Further, inhumanity is fostered when treat-
productive members of society. Handicapped
ment of "patients" is an opportunity to experi-
persons can maintain their health with certain
ment, use shock treatments, and chemotherapy.
provisions, but that may be no consolation if
In the growth of institutions,
they do not have access to appropriate housing,
jobs or transportation. If the environment is
inaccessible, life, though antiseptic, may be
The concentration of skilled expert
cruelly isolating. Modern theory of housing
staff never materialized, one of the
design for disabled individuals has realized the
main reasons being the partially self-
importance of choice and provision of pathways
elected isolation of institutions re-
for normalization.
mote from centers of learning and
There has always been a portion of the
population
Institutions have
disabled population who have lived independ-
tended to
retain professionals who
ently. The lack of widespread acceptance of
are deviant themselves
The
un-
such a lifestyle is due, in part, to the service-void
licensed physician, often unable to
at the community level. Those disabled who can
communicate in English, is notorious,
manage apartments or rooms, or consider board-
as are professionals who are alcoholic,
ing or convalescent settings sufficiently inde-
drug addicted, unstable, or health-
pendent, have been restricted in their choices
handicapped
Professionals not
and activities, and often relegated to a small
good enough to work on us or our
niche. Not only has the environment dis-
normal children were, it seems, good
couraged mobility, but fears of fire hazards,
enough to work on someone else's
insurance costs, or the ability for self-care by a
(disabled) children. Employers as
disabled person add further disincentives. Inde-
much as residents, become "institu-
pendence implies complete access to social,
tionalized. "11
economic, and physical success.
The concept of normalization entails proc-
esses to bring anyone handicapped to his/her
Finally, the institutional model requires peo-
optimum potential functional level. This will not
ple to move from their homes and families. The
be accomplished with just edifices or several
reality of the situation is that moving for most
projects. It requires a systematic approach.
individuals is difficult. One leaves friends, rela-
One of the biggest difficulties in providing
tives, and familiar surroundings. When this
usable housing is the lack of coordinated legisla-
choice has been made freely, the trauma is not
tion and the lack of thorough implementation of
3
those guidelines which are in existence. There
abled person needing housing or desiring to visit
are many programs and laws in the United States
friends.
today designed to assist and protect handi-
capped individuals (see Appendices A & B).
In order to promote integration, it is highly
desirable that disabled as well as non-disabled
However, due to the fact that legislation has not
been implemented to provide comprehensive
persons pay visits to each other and have free
planning and delivery of services, these programs
choice of their own living unit. 15 "The integra-
and laws are often ineffective.
tion of handicapped persons within the popula-
tion should be an identified goal in private as
For example, the Architectural and Transpor-
well as public housing. "16
tation Barriers Compliance Board was estab-
lished by Congress through the Rehabilitation
"The principle of integration, when applied to
Act of 1973. Currently, the Board is only
living arrangements for the disabled, requires a
major shift of primary design criteria
"17
involved with insuring that P.L. 90-480, the
Architectural Barriers law, is complied with.
Attention should be given to the availability of
This task is proving most difficult because of the
fully adapted living units to wheelchair users for
apparent inability of the government agencies to
individual as well as congregate living. 18 Adapt-
enforce existing regulations.
able design allows that "any or all spaces and
facilities can if necessary be made accessible by
Exclusion of the Post Office from compliance
adding or substracting elements. "19 Besides "a
and the lack of power of enforcement weaken
door handle requiring downward pressure in-
the Compliance Board. As a monitoring and
stead of a twisting motion" and "all approaches
planning mechanism, it must be strengthened.
level, "20 "provision of personal space and pro-
The law "should contain all necessary mandates
tection of territoriality of the occupant of that
with respect to enforcement, including penalties
space," is just as important. Also "cues as to
for non-compliance and/or benefits (for) prompt
ones orientation, achievable by design of envir-
adherence to a law which might provide for
onments which are differentiated from other
gradual. compliance. "13 Other obvious difficul-
proximate spaces by size, shape, form, materials,
ties with the effectiveness of the Board stem
texture, color, and detail," not solely as pros-
from the fact that it is composed of individual
thetic graphics, are fundamental for the "re-
department heads who are charged with moni-
tarded, cerebral palsied, epileptic, and confused
toring themselves.
elderly to protect individual dignity, enhance
Even if this Compliance Board were effec-
the knowledge of self and selfworth and to
tively monitoring construction of federally
foster maximum human development. "21
financed housing and other federally funded
programs, there is still no program which has
There has been lots of recent literature and
been designed to ensure that needs such as
ergonomic research documenting the parameters
attendants, and curb cuts are incorporated into
of design for the disabled. Barrier Free Site
communities so that disabled individuals could
Design from H.U.D. and American Society of
live independently; and, although all states have
Landscape Architects shows what can be done
some legislation which requires that when State
outdoors, and more and more books like this are
funds are being used for construction, buildings
refining the specifics of accessibility so that
should be barrier free, there is no real enforce-
most professionals have begun to understand.
ment mechanism to guarantee compliance in
Standards for Residential Facilities for the
most states.
Mentally Retarded adopted in 1971, the
Legislation advances in the last twenty years
A.N.S.I. Standard 117.1 in 1961, and Public
have begun to open doors for the disabled in
Law 90-430 in 1968 provided action in new
many countries. The noteworthy Swedish pro-
construction in the public sector toward barrier-
visions¹⁴ show how the rights of disabled people
free design, and provided that each federal
can be guaranteed. In the United States the
agency develop standards unique to its particular
surface has been scractched, although many
type of construction. However, this legislation
deeper measures are necessary before an equal
has lost some of its usefulness over the years. 22
society is guaranteed. Concern for all minority
Varying interpretations of specifications and
groups indicates a shift in attitude, although the
applicability, the lack of drawings (such as
environment has not changed much for a dis-
English and Swedish standards include), and
4
non-coverage of residences are drawbacks in
more institutional in tone" because residents
A.N.S.I.
"inevitably become more and more depend-
Concerned communities see that "Federal
ent. "29 The right to risk is basic to the right to
legislation leaves a great many buildings outside
participate, and handicapped persons should not
its scope." "There has been little litigation" to
be segregated under the misguided impression
demonstrate that "the right denied is extremely
that precaution is needed at the expense of
important and the discrimination and damge are
independence. 30 "To live independently one
evident. "23 "Statutes are riddled with waiver
need not be physically independent," but "con-
clauses, "24 and almost no communities have
trol over his own life, and the extent to which
protection for the disabled in housing codes.
he does influence his own destiny determines
Another problem is the ambiguity of codes,
the degree of independence he maintains. "31
from state to state and agency to agency. "The
The role of consumer participation in rehabili-
legislation should, as a mimimum, establish the
tation and housing efforts is becoming more
framework for local mechanisms to achieve the
recognized as essential. "The law should contain
objective of barrier-free architecture, possibly in
some authorization for involvement of groups of
terms of performance rather than specific quan-
disabled people in planning and evaluating the
titative measurements. The law should provide
effectiveness of the enactment, possibly includ-
for ongoing critical review of performacne under
ing financial help to enable such groups to plan
the law and necessary follow-up with respect to
for or judge the effects of other people's
specific buildings. "25
planning with regard to the real needs of dis-
The disabled have been included in the federal
abled people. "32 Self-determination and human
concept of anti-discriminaation in housing, in
rights in treatment, rehabilitation and housing
the Housing Act of 1964, but historically, there
is a basic and inviolable tenet.
has been no legal recourse to violations. Some
In spite of frustration caused by the lack of
states have waiver clauses that may be invoked
program coordination and ineffective implemen-
to exclude prospective tenants (as in the case of
tation of regulations, noteable progress in hous-
disallowing blind people if they have guide dogs;
ing disabled persons in the community is being
California Civil Code sec. 54.1). "H.U.D. handi-
made. 33 In Houston, Texas, for example, more
capped accessibility standards have been inter-
than eighty severely physically disabled persons
pretated to apply to only ten per cent of the
are clustered in four separate aparement com-
elderly housing units which unduly limits the
plexes located in different parts of the city. 34
number of living units which are made accessi-
These individuals share support services as well
ble.
"26
as responsibility for managing those services.
It is interesting to observe that in some cases
Communities have to a limited degree replicated
H.U.D. limits the number of barrier free units in
these efforts to provide suitable alternatives to
its projects; while in other cases, where com-
nursing homes and over-protective families.
pletely accessible projects are constructed,
Perhaps less institutional than the systematic
H.U.D. requires occupancy by persons who are
approach of providing support services in the
either elderly or handicapped. In both of these
context of a specific physical structure is the
cases, free integration of handicapped and non-
concept of making support services available to
handicapped individuals is effectively prevented.
an entire community. The Berkeley, California
Sometimes, "handicapped people elect to be
model is unique in this respect as the Center for
closely associated with one another in special
Independent Living (C.I.L.) is not a live-in
programs or housing. Het Dorp is a good
program. It is an office which is staffed with a
example. "It is a 400-unit community of
significant number of persons who themselves
severely handicapped persons from throughout
are disabled. These individuals manage, among
Holland, isolated from the city, and located on
other things, a community-wide transportation
hilly ground which necessitates the use of
service, peer advocacy and counseling service,
electric wheelchairs for mobility. "28 Note, how-
and attendant referral service.
ever, that in Het Dorp's complex "there isn't too
Experience in these programs indicates that
much interaction among the residents," and the
many handicapped persons, particularly those
Dutch collective facilities "gradually become
who have adapted to a protective living arrange-
5
ment or who have been segregated from the
SUPPORT SERVICES
general population, may require some sort of life
adaptive skills training to facilitate their adjust-
ment to a more independent living arrangement
Obviously, removing architectural barriers will
or their integration back into the community.
assist many disabled individuals. However many
Such a program has proven helpful to blind
unique services are needed by handicapped
persons in Richmond, California where mobility
individuals according to their disability, and for
training and counseling are being provided in the
these persons to lead a normalized life, these
context of a normal apartment complex. In this
services should be available in their immediate
program, participants are able to practice inde-
community or home environment. Dependency
pendence and develop self confidence.
resulting from disability may have many pro-
These housing or living experiments have only
found consequences. Society requires many per-
been functional for the last three or four years
sons with disabilities to depend on the charity of
and there is a great deal of development and
other people. This results in needless conflicts.
research into alternative models which must
For example, a person with a disability who is in
occur before any unqualified judgements can be
need of assistance to get in and out of bed must
made about the quality of life stimulated by
use the services of another individual. When the
these environments. It appears as if these
disabled individual is unable to pay for this
arrangements can be cost-effective and con-
service he/she is dependent on the helpful
siderably more satisfactory from an individual
individual. This type of a relationship often fails
viewpoint than those heretofore available alterna-
to enable the disabled individual to get up at a
tives. 35 Also, it eppears as if there is a need to
time most appropriate for his/her needs. Rather,
provide a spectrum of alternative living arrange-
the disabled individual must structure life
ments so that individuals may choose that which
around time available for the "helpful" individ-
suits them best.
ual. Additionally, the disabled individual may
not be able to choose an aide who will best meet
The federal government has recently made a
his/her physical needs, as well as his/her person-
number of potentially positive steps to en-
ality needs.
courage independent living by handicapped indi-
In California, a person who is in need of more
viduals. For example, the 1974 Housing and
than twenty hours of attendant care per week is
Community Act includes provisions for rent
defined by the State as being severely disabled.
subsidies to be paid to qualified handicapped
This individual is eligible to receive a maximum
individuals who may choose their own dwellings
of $505 from the Social Service department for
(see Appendix A). The Rehabilitation Services
attendant care. Additionally, this individual is
Administration continues to fund the sort of
eligible to receive $295 a month from Supple-
research and demonstration project which led to
mental Security Income (SSI). Attendant care,
the developments in Houston and Berkeley. The
monies come from Title XX which is a State-
Veterans Administration is assisting mobility
Federal matching program. The State also sup-
impaired veterans to be more functionally in-
plements SSI.
dependent by providing them grants to make
In most other states there are no problems
their homes adaptable and barrier free.
which provide a disabled individual with attend-
Certainly, progress is being made, yet many
ant care monies. According to the U.S. Census
obstacles and system-bound disincentives con-
of 1970, 52% of those persons defined as being
tinue to prevent individuals from obtaining their
disabled have incomes below $5200 per year.
maximum possible functional independence in
One may conclude that most persons in need of
the living arrangement of their choice. Obvious
such assistance are unable to pay for this service.
among these barriers are restrictions like one
Thus, dependency is created.
hundred per cent segregated living (Sec. 202), no
Attendants are needed to assist handicapped
attendant care allowance (in most states), cost
individuals with many sorts of special needs.
and size guidelines (F.H.A.), Section 8 counted
Some programs refer to attendants as parents.
as income (Social Security), self-support plan
Again, this role means that the parent is in
limits (Departments of Rehabilitation), and lack
charge. With disabled adults, irrespective of the
of enforcement of travel, housing, and environ-
disability, the optimum goal is as much inde-
ment access mandates.
pendence as possible. Thus, the approach used
6
to provide assistance should ensure that the
means that the disabled individual is unable to
disabled individual will have the opportunity to
travel in the community as other people who are
be in charge of the situation.
able to use public transit do. Legislation should
A number of effective attendant arrangements
be passed which will ensure that all vehicles
have been demonstrated. At the Center for
purchased in the future will be accessible to all
Independent Living in Berkeley an attendant
individuals. The Federal-Aid Highways Act of
care counselor interviews individuals interested
1974 amended its definition of handicapped to
in this kind of work. The disabled individual
include persons in wheelchairs. S.662 which
who is looking for a worker hires and fires and
definition of handicapped in the Urban Mass
directly pays the individual for services ren-
Transportation Act of 1970 does not specifically
dered. There is also an emergency attendant
include persons in wheelchairs. S.662 which
program which was created to assist an individ-
passed the Senate in September of 1975 would
ual when the regular attendant is not available or
amend existing laws to include the provision.
some other problem occurs. There is an exten-
Even if legislation is passed which guarantees
sive outreach program in the community which
that all new transportation systems be designed
makes persons aware of the services being
to meet the needs of all persons in our society,
provided by the Center.
there will not exist a system to meet the current
Shared attendant services may be very effi-
transportation needs of more severely disabled
cient and cost-effective. 36 Living arrangements
individuals for many years.
involving small groups of four to eight are fairly
Routine medical checkups, occasional treat-
easy to manage. With larger groups, attendant
ment, specialized equipment and supplies are
staffing and scheduling becomes complicated
needed by persons with disabilities to facilitate
and administrative tasks multiply. Everyone in
and maintain their mental and physical health.
the group should assume a share of these
Health services, wheelchairs, prostheses, hearing
responsibilities, whether they do SO by hiring
aids, tape records, and so forth, are very
someone to manage the system or by dividing
expensive. It has been suggested that the govern-
the work among themselves.
ment assume the responsibility for providing the
After determining staff needs, an efficient
services and hardware which handicapped per-
routine staff schedule can be planned. Two
sons need as a ressult of their disability. One
primary staffing patterns and various combina-
major problem disabled people have is in obtain-
tions of these two have been operative with large
ing health insurance which will meet all their
groups. The first style is modeled after industrial
medical needs. One of the major disincentives
staffing patterns where three eight hour shifts
for disabled persons who are served by Medicaid
follow each other consecutively throughout the
or Medical is that when their income goes too
day. This style works exceptionally well for
high they will lose this benefit. There is a need
groups of severely disabled persons who need
to provide comprehensive health insurance
constant or frequently unscheduled attendant
which will meet all the medical needs of disabled
care. The other primary group staffing pattern is
people. Until such a program is instituted many
more efficient with smaller and less severely
disabled individuals who could work will be
disabled groups. This style provides a personal
unable to do so.
aide for each resident every morning and evening
to assist him with dressing, undressing, and
bathing. In this arrangement the entire group
HOUSING ALTERNATIVES
shares a full time or live-in attendant for
incidental and emergency care.
The following section of this paper is taken
In order for a mobility impaired individual to
from a position paper prepared by Irvin Rutman
freely get around in the community, transporta-
on behalf of the National Institute of Mental
tion is essential. Current public transportation
Health for the White House Conference on
systems do not meet the needs of people who
Handicapped Individuals. This section provides
are unable to ambulate steps. Such a system
an excellent basis for definition and discussion
produces undo hardship on this class of individ-
of various sorts of alternative living arrange-
ual. Private transportation systems often charge
ments. (References for this section may be
exhorbitant amounts of money. Such cost
found on page 10.)
7
"Although a variety of models and ap-
Apartment Programs (also sheltered apart-
proaches regarding residential alternatives have
ments, cooperative apartments)-Residential
been developed, agreed-upon classifications do
units designed to accommodate 2-4 persons in
not exist. To establish a point of departure, we
apartment settings. Typically designed for indi-
may consider the following as a generic defini-
viduals capable of higher levels of independent
tion of a residential care facility:
functioning so that live-in staff are not required.
Often affiliated with a parent corporation such
A community-based housing facility
as a rehabilitation center, community mental
health center, hospital, church organization, etc.
used as an alternative to hospitaliza-
Specialized Transitional Facilities (quarter-
tion or institutionalization that pro-
vides 24-hour non-medical care to a
way houses, three-quarter-way houses) residen-
tial. facilities designed to provide a transitional
number of individuals for a designated
experience between an institution and another
length of time in a structured, sup-
portive environment. The facility may
protected environment, or between another pro-
tected environment (i.e., halfway house) and the
or may not directly provide additional
community. Quarter-way houses tend to be
rehabilitative programs, but the major
located in or near the grounds of the institution;
goal for the client is his active partici-
three-quarter-way houses are usually located in
pation in community life to the fullest
normal neighborhood locales.
degree that he is able. (17)
Long-term Care Facility (also long-term com-
munity home, personal care home)-community-
The following types of programs are generally
based housing for individuals who require long-
included within the continuum of residential
term or permanently supervised living situations
care facilities:
and who may need minimal nursing-type care.
Such individuals are usually physically mobile,
Foster Homes-family settings in which
able to accomplish some of their self-care needs
relatively small numbers (typically, 1-6) of
with some supervision, but otherwise tend to
individuals, children or adult, live in a private
lack the resources to cope with the problems of
home with a sponsoring family in a setting
daily living and will seldom be able to live inde-
characterized by a family-like environment. In-
pendently in the community.
cludes both individual and group foster homes.
Boarding Homes (also board and care facilities)
More specialized in nature than the types
-residential facilities providing room and board
outlined above, but deserving of mention, are
the following additional programs:
to groups of from 3 or 4 to as high as 15-20
individuals. Typically are operated by untrained
Nursing Homes: Facilities for acutely or
proprietors and provide few services other than
provision of room, board and minimal super-
chronically ill persons who require attention by
vision.
medically trained staff, including nurses. Serv-
ices might include executing treatment plans and
Halfway Houses-community-based residen-
administering medications as ordered. Skilled
tial settings providing transitional living experi-
nursing homes serve persons not in need of
ences to groups of from about 6-25 clients, with
hospital care but requiring skilled nursing care.
the average number about 16. Predominantly
Such individuals may be bed-fast or ambulatory,
non-profit in nature, they typically offer a
but so handicapped that they are unable to care
variety of personal adjustment, counseling and
for themselves. Intermediate nursing care facili-
socialization experiences in addition to basic
ties serve persons not needing hospital or skilled
room and board services. Most halfway houses
nursing care but still requiring limited nursing
are "free-standing organizations," some, how-
care. Such persons are semi-ambulatory and have
ever, are affiliated with other organizations such
some self-care skills and may be capable of
as rehabilitation centers, hospitals, mental health
becoming involved, under supervision, in some
associations, community mental health centers,
community activites.
etc. Most, although not all, are established as
Lodges-a specialized residential-vocational
transitional and operate under a maximum time
model utilized primarily for the mentally dis-
limit which ranges from 3-12 months.
abled in which formerly hospitalized patients are
8
helped to secure, furnish, and operate a com-
scribed above. SSI guidelines, however, require
munal residence with minimal or no staff in-
special case management, monitoring and train-
volvement. In addition, lodges typically establish
ing procedures to assure the provision of ade-
small semi-skilled business ventures to enable the
quate domiciliary care services, as well as some
lodge members to become employed and self-
minimally prescribed personal supervisory care
sufficient. Lodge-type programs exist in some
by the domiciliary care proprietor.
15-20 states throughout the nation. (13)
Domiciliary Care programs-programs author-
Classifications
ized as part of the Supplemental Security
Income (SSI) legislation were intended to facili-
In considering this array of community resi-
tate residential care for disabled and aged
dential alternatives, it is helpful to organize
individuals. Special supplementary funding in-
them according to certain key variables. Al-
centives are designed to facilitate the creation of
though numerous organizational frameworks are
domiciliary care settings which, in general form
possible, we shall limit ourselves to the following
are similar to boarding home programs as de-
two:
1-4
5-8
9-20
20 or more
Persons
Persons
Persons
Persons
Foster home
Group foster home
Halfway house
Long-term Care Facility
Sheltered apartment
Boarding home
Boarding home
Nursing Home
Special transitional
Long-term Care
quarter-way and three-
Facility Lodge
quarter-way house
It will be noted in the table as well as the
A second type of classification is in terms of
one that follows, that some overlap exists
capacity for independent functioning. Along this
between categories.
dimension, the array of facilities would be
distributed as follows:
FUNCTIONAL LEVEL
Lowest Functional
Limited Independent
Partial Independent
Nearly Independent
Level; Needs Regular
Function; Needs
Functioning; Needs
Functioning; Needs
Supervision
On-going Supervision
Moderate-little Super.
Minimal Supervision
Nursing home
Quarter-way house
Halfway house
Three-quarter-way house
Long-term Care
Individual and group
Three-quarter-way
Supervised apartment
Facility
foster homes
house
program
Boarding Home
Boarding Home
Individual and group
Cooperative apartment
Domiciliary Care
foster homes
program
Lodge
Lodge
Cost of Housing Alternatives
ascertain. Several variables tend to correlate with
costs: the auspice of the residential program;
As might be expected, cost factors in this
whether it is non-profit or for-profit; the extent
field (1) vary widely, and (2) are difficult to
to which additional program services (i.e., coun-
y
seling, therapy, recreation, vocational prepara-
and fewer on-site services are required. Per diem
tion, follow-up, etc.) are provided by the facil-
costs for supervised apartment living may be
ity; the size and qualifications of the facility
estimated to fall within the range of $3 to $8
staff; and the condition and location of the
per client-although this is by no means a
physical plant and furnishings.
well-documented figure. Supervisory costs, as
It is impossible, in the space allowed, to
distinct from the apartment rental, for providing
discuss all of these factors in detail. However,
these services may be as low as $1 to $2 per diem.
some general trends and dimensions regarding
(4) At the other extreme, skilled and inter-
costs may be briefly noted. First, it is almost
mediate level nursing homes require the highest
axiomatic that the more extensive and enriched
per diem expenditures; a reasonable estimate of
the total program offering is, the more expensive
per diem costs for such facilities would be
the residential costs will be; therefore, facilities
between $20 to $30 or even higher. "37
which provide counseling, re-socialization,
It should be noted that cost of living arrange-
therapy, medical follow-up, vocational training
ments may be both material and nonmaterial,
and the like, as part of the total program, will
while benefits are mostly non-material. Material
show higher operating costs. Next, there is a
costs may be relatively low. for those persons
tendency for free-standing facilities to be less
who live in multi-resident dwellings and share
costly than those associated or affiliated with
life support services. On the other hand, material
parent organizations. This may be the result of
costs may be relatively high for those persons
duplication of certain administrative overhead
who choose to live alone and hire a full time
and/or personnel costs.
personal attendant, or those who live in more
Auspices of the facility will also tend to
institutionalized settings.
influence costs. The findings of a national survey
Non-material cost includes frustration caused
of halfway houses, completed in 1975 (12),
by waiting and compromising, insecurity caused
show that municipal or state-operated facilities
by undependable attendant services, or un-
tended to have the lowest average number of
certainty about arrangements, and boredom
clients per facility, followed by private, non-
resulting from routinization and segregation.
profit facilities, then federally-auspiced facilities,
Some non-material costs, like frustration and
then finally, profit-making facilities. Moreover,
boredom, may be higher in more institutional-
when per diem costs were examined, it was
ized settings, while other non-material costs, like
found that the for-profit facilities reported
insecurity, may be higher in less institutionalized
higher per diem costs ($18.30) than either
arrangements.
federal ($12.30), state ($14.70), or private
Many housing programs for handicapped indi-
non-profit programs ($13.80). According to this
viduals outside the United States suggest that a
survey of halfway house type programs, it can
reorganization of priorities is needed in plan-
be generalized that large private, profit-making
ning alternate living arrangements for institu-
facilities are characterized by a large number of
tional living. The Fokus model in Sweden
clients, high per diem costs, a large full-time
arranges accessible housing at two-thirds the cost
staff, and relatively few professional staff. Public
of living in a nursing home, including rent and
(i.e., federal, state) facilities have a higher pro-
portion of professionals on their staff and report
*References (Note: these references are from an original paper
lower per diem costs. (12)
by Irvin Rutman, N.I.M.H.)
According to national statistics, per diem
4. Goldmeier, J. New Directions in Aftercare. Cooperative
costs for halfway houses currently fall within
Apartment Living. Mental Health Study Center, NIMH, Adelphi,
the general range of $12 to $18 per day, with
Md., 1975.
the average at approximately $16. (6,12)
6. Halfway Houses Serving the Mentally Ill and Alcoholics.
Boarding homes and long-term care facilities
United States, 1973. National Institute of Mental Health, U.S.
Department of Health, Education, and Welfare, Rockville, Md.
(which generally offer fewer services) operate at
12. Rutman, I.D., and Piasecki, J.R. A National Survey of
a noticeably lower cost rate: a fair estimate
Community-Based Residential Facilities. Horizon House Insti-
would be that the per diem costs in such
tute, Philadelphia, Pa., 1976.
facilities would fall within the range of $7 to
13. Rutman, I.D. Psychosocial Rehabilitation: Principles,
$15.
Methods and Assessment. Manuscript. Publication in 1976.
17. Zoning for Residential Care Facilities: Toward a Reason-
Apartment programs are still less expensive to
able Solution. Mental Health Planning Council of Milwaukee
operate because of lower plant and staff costs
Milwaukee, Wisc., 1975.
10
service, charging about twenty per cent of the
grams run by disabled individuals to train
resident's income. "Urban and rural districts
professionals who provide services to disabled
have communally employed home helpers who
individuals, and to develop service programs to
serve old, sick, and disabled people. "38 This
meet the existing service needs of disabled
project enables handicapped people to live se-
individuals.
curely under the same conditions and with the
6. Develop and make available a compila-
same opportunities as non-handicapped, in a
tion of all legislation and regulations pertaining
chosen geographical area, with access to reliable
to the needs of individuals with disabilities.
personal service, transportation, work, and satis-
7. Educate disabled individuals on how to
fying free-time activities. 39
live independently.
8. Amend existing transportation legislation
CONCLUSIONS
to ensure that disabled individuals will be able to
use public transportation systems.
Few people realize the extent of the problems
9. Adopt legislation to prohibit the develop-
which face every handicapped individual who is
ment of segregated housing.
in need of housing in the United States today.
10. Do away with all work disincentives by
When solutions are brought forth it is often
giving grants to disabled individuals to meet
believed that cost is excessive. Furthermore,
extraordinary needs like attendant care.
there is a definite lack of coordination of effort,
11. As a short range goal, give disabled
and there is a need to improve the methods of
individuals cash grants to use toward their
implementation.
transportation needs. This money should not be
Some of the problems result from a demo-
restricted for work, medical or educational
graphic void: "There is a lack of statistical data
needs.
of those handicapped persons in particular who
12. Ensure compliance with legislation that
are affected. "40 Despite some functional break-
mandates all children with disabilities to freely
downs appearing in Barrier Free Site Design by
receive appropriate public school educations.
H.U.D., there is not analysis of the interface
13. Adopt. the A.N.S.I. Standards as a mini-
between disability and housing, per se. A lack of
mum for the states as well as all federal
research exists. No one knows how many people
administrations.
are in what kind of housing and at what
14. Encourage the development of state
disadvantages. Local breakdowns of figures are
statutes which prevent discrimination against
important as well. In a nation with space-age
small living units for the handicapped through
technology and precision war machines, the
restrictive zoning provisions.
solution to a simple problem of human factors
15. Establish funding sources which can pro-
analysis and financing should be easy.
vide seed monies for the development of more
Other problems become evident when one
normal residential facilities.
reviews the following suggestions for legislative
16. Create residential standards which are
action which have been offered by a number of
sufficiently flexible to allow for program innova-
sources:
tions without sacrificing the quality of care.
17. Design a cooperative market survey to
1. Give outright cash grants to disabled
analyze housing needs for the full range of
individuals to enable them to modify their own
handicapped individuals in terms of quantity
homes.
and quality of housing and locational factors.
2. Pass comprehensive health insurance
18. Stimulate states to make their local hous-
which will meet all the medical needs of all
ing codes compatible to Federal requirements.
people.
3. Enforce existing legislation both at the
Some of the most important changes since the
federal and state levels pertaining to architec-
commencement of the atomic age have centered
tural barriers.
around the increased importance of human life
4. Remove all existing waiver provisions in
as considered not just by individuals but nations,
federal and state legislation pertaining to archi-
too. Humankind must find ways to adjust its
tectural barriers.
governmental mechanisms to serve all individuals
5. Provide federal, state, and municipal
or destruction is in store. The principle of
monies to help create community based pro-
affirmative action is indication that equal rights
11
have not been provided and offers recon-
pertinent issues which Rita McGaughey sug-
ciliation. Breakdowns of economies and failures
gested for the White House Conference on
of rehabilitation bureaucracies are evidence of
Handicapped Individuals. On the other hand, it
the need for new structures.
may be very appropriate to end this paper by
Much lip service is paid to the need of
suggesting a new commitment to solving the
developing different housing models so that
problems and meeting the housing needs of
individuals with special needs would be able to
handicapped individuals.
select the life style most appropriate for them.
Yet, when reviewing the expenditure of federal
"The life styles, including the choice
monies for model housing it is quite apparent
of housing, of all people in our coun-
that the traditional model of segregated housing
try are closely related to their rights
still prevails. Many persons capable of independ-
for freedom and pursuit of happiness.
ent living are forced to remain in rehabilitation
They are also closely related to our
centers, hospitals, or extended care units be-
country's economic stability and
cause community supports and accommodations
social welfare. As yet, however, no
suitable to their needs are unavailable. These
national philosophy or policy exists to
people have never had the opportunity to live in
guide the setting of national priorities
an integrated community, with the freedom to
in the development of public housing
work and travel where and with whomever they
programs or the construction of pri-
choose.
vate housing by the building industry.
There is clearly a need to have transitional
programs which will enable an individual who is
In considering the housing needs of
moving from an institution into the community
persons with handicaps, it is evident
the opportunity to learn how to live in a new
that there is a need for a reorganiza-
surrounding. But, the ultimate goal should be to
tion of national priorities based upon
create programs which will enable the person
full recognition of the human dignity
with a disability to live integrated in the
deserved by the handicapped indi-
community.
vidual just as much as the non-
One must look at housing from a holistic
disabled for a realization of his self-
perspective to recognize the need for a compre-
worth. The same opportunity to select
hensive approach. Because every individual has
a residence of his choice should be
different needs, there must be a number of living
made available to the handicapped
arrangements available to choose from. Com-
person as it is. to the non-handi-
munity support services and various solutions to
capped.
"41
special problems are needed to supplement
school and work, recreation and family. Clusters
This opportunity can only be ensured by
of homes may be the largest facility practicable
providing adequate residential and community
for satisfying the complex of human housing
programs for persons with disabilities.
needs. It is necessary never to forget the role the
community plays in effecting or blocking inte-
grated programs for persons with disabilities.
END NOTES
There appears to be a failure on the part of
community organizations to work aggressively
1. Wolfensberger, Wolf. The Origin and Nature
with handicapped individuals. Many programs
of our Institutional Models, Human Policy
never get off the ground because of resistance
Press, Syracuse, 1975, pp. 2, 3.
from non-disabled individuals, who have grown
2. Johnson, A., "Report of Committee on
up in a society which has basically feared or not
Colonies for Segregation of Defectives,"
understood the needs of persons with disabili-
Proceedings of National Conference of
ties. It is of paramount importance to recognize
Charities and Correction, 1903, p. 246.
this problem and to enact awareness programs in
3. Wolfensberger, op. cit., p. 24.
order to ensure a greater understanding and
4. Ibid., p. 27.
commitment from the average person.
5. Ibid., p. 31.
It may seem ironic to close this paper by
6. Ibid., p. 36.
quoting from the Introduction to a list of
7. Ibid., p. 54.
12
8. Ibid., p. 2.
32. United Nations Expert Group Meeting on
9. Ibid., pp. 4-12.
Barrier-Free Design, op.cit., p. 29.
10. Fenton, Joseph, Ed.D., Residential Needs of
33. Laurie, G., Laurie, J. & McGwinn, D.,
Severely Physically Handicapped Non-
Housing and Home Services for the Dis-
Retarded Children and Young Adults in
abled, Elderly, and Mentally Retarded, New
New York State, Institute of Rehabilitation
York: Harper and Row, in press.
Medicine, May, 1972, p. 7.
34. Frieden, Lex, op.cit., pp. 16-20.
11. Wolfensberger, op.cit., p. 61.
35. Stock, D. & Cole, J., Adaptive Housing for
12. United Nations Expert Group Meeting on
the Severely Physcially Handicapped in R-
Barrier-Free Design, Barrier Free Design,
ehabilitation Counseling Bulletin, 1975,
Rehabilitation International, June, 1975, p.
June, pp. 224-231.
6.
36. Frieden, Lex, op.cit., pp. 12, 14.
13. Ibid., p. 29.
37. Rutman, Irvin D., Adequate Residential and
14. National Swedish Institute for Building Re-
Community-Based Programs for the Men-
search, Accessible Towns-Workable Homes
tally Disabled, Horizon House Institute for
Document D9: 1972, Stockholm, 1972, pp.
Research and Development, Feb. 1976, pp.
4, 5.
17-22.
15. The American Society of Landscape Archi-
38. United Nations Expert Group Meeting on
tects Foundation, Barrier-Free Site Design,
Barrier-Free Design, op.cit., pp. 17, 19, 20.
H.U.D. Control No. H-2002-R, 1975, pp.
39. Leonard, Edmond J., op.cit., p. 9.
18, 19.
40. United Nations Expert Group Meeting on
16. Kliment, Stephen A., Into the Mainstream,
Barrier-Free Design, op.cit., p. 7.
A Syllabus for a Barrier Free Environment,
41. McGaughey, Rita, position paper on "Ade-
RSA, HEW, AIA, June, 1975, p. 5.
quate Residential and Community Programs
17. United Nations Expert Group Meetings on
for Persons with Disabilities," National
Barrier-Free Design, op.cit., pp. 17, 19, 20.
Easter Seal Society for Crippled Children
18. The American Society of Landscape Archi-
and Adults, March 1976, p. 1.
tects Foundation, op.cit., pp. 18, 19.
19. Kliment, Stephen A., op.cit., p. 14.
20. Ibid., pp. 6, 9, 12, 15, 24.
21. United Nations Expert Group Meeting on
BIBLIOGRAPHY
Barrier-Free Design, op.cit., p. 20.
22. Kliment, Stephen A., op.cit., p. 5.
American Society of Landscape Architects
23. Ibid., pp. 6, 9, 12, 15, 24.
Foundation, Barrier-Free Site Design, HUD
24. Ibid., p. 5.
Contr. No. H-2002-R, 1975.
25. United Nations Expert Group Meeting on
Architectural and Transportation Barriers Com-
Barrier-Free Design, op.cit., p. 29.
pliance Board, Freedom of Choice, DHEW,
26. The Comptroller General of the United
October, 1975.
States, Report to the Congress, Further
Comptroller General of the United States, Re-
Action Needed to Make All Public Buildings
port to the Congress, Further Action Needed
Accessible to the Physically Handicapped,
to Make All Public Buildings Accessible to the
July, 1975, p. 3.
Physically Handicapped, July 15, 1975.
27. United Nations Expert Group Meeting on
Fenton, Joseph, Ed. D., Residential Needs of
Barrier-Free Design, op.cit., pp. 22, 30.
Severely Physically Handicapped Non-
28. Leonard, Edmond J., "Disabled Housing in
Retarded Children and Young Adults in New
Scandinavia and Holland", in Performance,
York State, Institute of Rehabilitation Medi-
Nov. 1975, pp. 23, 24.
cine, May, 1972.
29. Ibid, p. 25.
Frieden, Lex, Independant Living Arrangements
30. United Nations Expert Group Meeting on
for Severely Physically Disabled Persons, pub-
Barrier-Free Design, op.cit., p. 22, 30.
lication pending.
31. Frieden, Lex; Independent Living Arrange-
Kliment, Stephen A., Into the Mainstream, A
ments for Severely Physcially Disabled Per-
Syllabus for a Barrier Free Environment,
sons, publication pending, pp. 2, 16.
RSA, HEW, AIA, June, 1975.
13
Laurie, G., Laurie, J. & McGwinn, D. Housing
Rutman, Irvin D., Adequate Residential and
and Home Services for the Disabled, Elderly,
Community-Based Programs for the Mentally
and Mentally Retarded. New York: Harper
Disabled, Horizon House Institute for Re-
and Row, in press.
search and Development, Feb., 1976.
Leonard, Edmond J., "Disabled Housing in
Stock, D. & Cole, J. Adaptive housing for the
Scandinavia and Holland," in Performance,
severly physically handicapped. Rehabilita-
Nov., 1975, p. 25.
tion Counseling Bulletin, 1975, June,
McGaughey, Rita, Position paper on "Adequate
224-231.
Residential and Community Programs for
United Nations Expert Group Meeting on Barrier-
Persons with Disabilities," National Easter
Free Design, Barrier Free Design, Rehabilita-
Seal Society for Crippled Children and
tion Internationl, June, 1975.
Adults, March, 1976.
Wolfensberger, Wolf, The Origin and Nature of
National Swedish Institute for Building Re-
our Institutional Models, Human Policy Press,
search, Accessible Towns-Workable Homes,
Syracuse, 1975.
Document D9: 1972, Stockholm, 1972.,
14
APPENDIX A
FEDERAL AGENCY HOUSING LEGISLATION*
Department of Housing and
Urban Development
A. Authorization
determined, pursuant to regulations issued by the
Secretary, to have an impairment which: (1) is expected
Community Development Block Grant: Title I, Sec-
to be of long, continued duration, (2) substantially
tion 103 of the Housing and Community Development
impedes his ability to live independently, and (3) is of
Act (HCDA) of 1974.
such a nature that ability could be improved by more
Section 231: Section 201 (a) of the Housing Act of
suitable housing conditions. A person shall also be
1959
considered handicapped if such person is a develop-
Section 8: Title II, Section 8 of the HCDA of 1974
mentally disabled individual as defined in Section 102
Section 202: Title 11, Section 7 of the HCDA of 1974
(5) of the Developmental Disabilities Services and
Research into housing the handicapped: Title VIII,
Facilities Construction Amendments of 1950.
Section 815 of the HCDA of 1974
A handicapped person may receive Section 8 assist-
Comprehensive planning: Title IV of the HCDA of
ance in existing housing which is suitable for occupancy
1974
by a handicapped person. Projects may be constructed
or rehabilitated to contain some specially designed units.
B. Purpose
Or, an entire facility may be designed for occupancy by
the handicapped. All units may be assisted under Section
Nonprofit or profit motivated groups and public
8 in the case of projects designed for the handicapped.
agencies may sponsor the construction or rehabilitation
of specially designed rental housing for the elderly or
D. Scope
handicapped under the Section 231 mortgage insurance
program. This program provides for insured loans at 8
1/2 percent interest, plus 1/2 of one percent mortgage
a. Community Development Block Grant Program
insurance premium. (The rate is subject to periodic
redetermination.)
The regulations, guidelines, and policy governing the
Section 202 construction loans are available to
implementation of the Community Development Block
nonprofit and corporative sponsors of housing specially
Grant Program (CDBG) stipulate that the Architectural
designed for the handicapped, participating in the
Barriers Act of 1968, 42 U.S.C. 4151, is applicable to
Section 8 Housing Assistance Payments Program. Final
any assistance given under the program. The design of
regulations are being developed for the Section 202
any project built with such funds must comply with the
program.
American Standard Specifications for Making Buildings
The new Section 8 Housing Assistance Payments
and Facilities Accessible to and Usable by the Physically
Program for Lower Income Families, as authorized by
Handicapped (ANSI A117.1). This includes any project
the Housing and Community Development Act of 1974,
work now eligible under CDBG which formerly would
assists handicapped persons who cannot afford decent
have been built under the categorical programs. Categori-
housing on the private market. Projects may be financed
cal grantsmanship was replaced by entitlement funds
by FHA-insured loans or other acceptable methods of
allocated on the basis of community size, poverty, and
financing, with Section 8 assistance being provided on
the prevalence of overcrowded housing, with very few
behalf of eligible lower income persons and families
strings attached.
through assistance payments contracts with the housing
Two titles in the Act are currently administered by
owners.
the Assistant Secretary for Community Planning and
Development: Title IV is the amended "701" Compre-
C. Eligibility
hensive Planning and Management Assistance Program;
Title I is the Community Development Block Grant
The statutory definition for the Section 231 and
Program which consolidates several former categorical
Section 202 programs, as amended by the Housing and
programs: Urban Renewal/NDP, Model Cities, Water and
Community Development Act of 1974, provides that a
Sewer, Neighborhood Facilities, Public Facility Loans,
person shall be considered handicapped if such person is
Open Space Land, and Rehabilitation Loans.
*From: Architectural and Transportation Barriers Compliance Board, Freedom of Choice, DHEW, October, 1975.
15
Under Title IV, $100 million has been appropriated
government, are eligible for hold-harmless grants. The
for fiscal year 1975 to aid comprehensive planning for
grants must be used to develop viable urban communi-
urban and rural development and to assist state and local
ties, including decent housing and a suitable living
governments to establish and improve planning staffs
environment and expanding economic opportunities
and techniques on an area-wide basis. Eligible recipients
principally for persons of low and moderate income.
include states for state-wide planning and assistance to
Certain activities are mandatory for the applicant to
sub-state applicants applying to the states; large cities,
receive Title I entitlement grants: preparation of a
urban counties, metropolitan clearing houses, councils of
housing assistance plan and a community development
government, Indian tribal bodies, and other govern-
plan summary, program, and budget to determine needs,
mental applicants with special planning needs that
goals, and objectives. The plan must identify the needs
cannot otherwise be met.
of the entire population including the handicapped.
Recipients are required to carry out an ongoing
The housing assistance plan must include the housing
comprehensive planning process involving citizens and to
needs of the low-income elderly and handicapped with
develop a comprehensive plan which includes, as a
data and planning for their housing as a distinct
minimum, a housing element and a land use element.
component. Title I funds may be used to acquire sites
The plan should address the needs of all citizens
for housing, including housing for the handicapped.
including the elderly and handicapped. Both elements
Funds may be used for rehabilitation financing, includ-
must specify goals and measurable annual objectives,
ing funds for handicapped homeowners. Funds may also
programs to accomplish the objectives, and program
be used to undertake comprehensive code enforcement
evaluation criteria. In addition, land use policies must be
projects to upgrade housing, including that occupied by
coordinated at all governmental levels and functional
the handicapped.
planning must be integrated with comprehensive plan-
Under Title I a broad range of public works and
ning.
facilities are eligible which may benefit the handicapped
Activities which may be undertaken under Title IV
as well as the general population-streets, sewers, fire
include natural resource planning; planning for physical
protection services and facilities, parks and playgrounds,
land use facilities and service delivery systems including
for example. Neighborhood facilities, which may house
health, recreation, education, culture, transportation,
programs for the handicapped, are included. Similarly,
utilities, fire protection, and police; economic develop-
senior centers may be funder under the new Act. A
ment planning including employment; equal opportunity
further provision is the use of Title I funds to remove
planning, financial planning, evaluation, and research.
material and architectural barriers restricting the mobil-
The extent of citizen involvement is determined by
ity of the handicapped. Such barriers may be removed in
the applicant according to the level of government and
existing buildings and must be removed in new construc-
the nature of the activity under consideration. The
tion, altered, or leased buildings. Barrier removal might
applicant must include a statement of the extent of
include ramps, railings, or slope gradations.
citizen interaction in starting as well as in responding to
Public services are eligible activities if they are in
proposals, the extent of access to the decision-making
support of other community development activities. To
process (i.e., involvement where major plans, policies,
be supportive, they must be located in an urban renewal
and priorities or objectives are being determined). But
area or concentrated code enforcement and rehabilita-
citizen involvement does not require citizen concurrence
tion area or they must apply directly to a physical
in final determinations. The latter is the sole responsi-
development activity permitted under Title 1. For
bility of the applicant.
example, funds could be spent for homemaking services
Although the program serves all Americans, nothing
or tenant counseling in a handicapped housing project
in the statute is geared specifically toward the handi-
which is being rehabilitated with block grant money.
capped, nor is the administrative focus of the program in
Environmental review and relocation requirements as
this direction. Because 701 grants are relatively small,
they apply to the new Act do not focus on specific
there is less likelihood that a recipient will be able to
population groups. However, "last resort housing" may
study the needs of any special group in depth after
be used for groups such as the handicapped if no other
meeting the mandatory comprehensive planning require-
appropriate housing is available for them in the reloca-
ments, but, at the same time, this possibility is not
tion process.
precluded.
A citizen participation plan must be developed for
Under Title I, $8.6 billion has been authorized for
involving citizens in preparing the application prior to
community development activities, including budget
submission. Handicapped citizens may suggest needs,
authority for $2.55 billion for fiscal year 1975 and a
express activity preferences, and assist in selecting
request of $2.75 billion for fiscal year 1976. States,
priorities for the plan and program. They may also assist
metropolitan cities, and urban counties are eligible for
in program implementation by monitoring activities
the entitlement grants under the Act and statos and
related to their interests and by employment in the
other units of general local governments are eligible for
program and involvement in its evaluation. Although
discretionary grants. Metropolitan cities and urban coun-
final determination on the use of the funds is the sole
tics, and in certain cases other units of general local
responsibility of the recipient, the recommendations of
16
citizens must be taken into account. In the decision-
The new Section 8 Housing Assistance Payments
making process, the handicapped and their advocates
Program for Lower-Income Families, as authorized by
must compete in the area of community interest groups
the Housing and Community Development Act of 1974,
for a share of the money to meet their needs.
offers the best enicle for assisting handicappéd persons
In addition to the entitlement funds, certain funds
who cannot afford decent housing on the private
which may serve the handicapped are available at the
market. Projects may be financed by FHA-insured loans
discretion of the Secretary. While not designated specifi-
or other acceptable methods of financing, with Section 8
cally for them, discretionary funds allocated to new
assistance being provided on behalf of eligible lower-
communities, for example, may be used for projects
income persons and families through assistance pay-
meeting their needs. As a minimum, new communities
ments contracts with the housing owners.
must conform to the Architectural Barriers Act if they
A handicapped person may receive Section 8 assist-
receive block grant funds.
ance in existing housing which is suitable for occupancy
Discretionary funds are also available for innovative
by a handicapped person. In addition, projects may be
projects which encompass a concept, system, or proce-
constructed or rehabilitated which will contain some
dure that is unique, advance the state of the community
specially designed units or an entire facility may be
development art, and have the potential for transfer-
designed for occupancy by the handicapped. All units
ability, based on priority areas of national significance
may be assisted under Section 8 in the case of projects
established each year by HUD.
designed for the handicapped.
Monitoring procedures are currently being prepared
by HUD. Monitoring will be limited to determining
C. Housing the handicapped under the various HUD
whether the recipient has met the requirements of the
programs
Act and other related statutes rather that focusing on
the merits of any local program or the specific activities
Thus far HUD has helped develop eight buildings
within it.
designed wholly or in part for occupancy by handi-
The impact of both the amended 701 program and
capped or disabled persons. The lessons learned from
the new block grant program in meeting the needs of the
their construction and operation can contribute mean-
handicapped should become evident as both programs
ingfully to accomplishment and progress in this field.
become operational this year.
Vistula Manor
b. Development of HUD-assisted housing for the
The first public housing for handicapped people was
handicapped
developed in Toledo, Ohio, in 1967. The building had
164 units, half to be occupied by the handicapped, half
Nonprofit or profit-motivated groups and public
by the elderly. When it opened, only 17 units, or 10
agencies may sponsor the construction or rehabilitation
percent, were occupied by handicapped persons. Since
of specially designed rental housing for the elderly or
then the percentage has risen about 2 percent per year,
handicapped under the Section 221 mortgage housing
so that even today fewer than 30 percent of the
program. This program provides for insured loans at 8
occupants are handicapped.
1/2 percent interest (subject to redetermination), plus
The building borrowed from designs of Dr. Howard
1/2 of one percent mortgage insurance premium.
Rusk's Rehabilitation Institute of New York. It featured
Section 202 construction loans will be available to
lowered mirrors, sliding doors, shallow adjustable
nonprofit sponsors of housing specially designed for the
kitchen sinks, raised electrical outlets, a single water
elderly or handicapped, participating in the Section 8
faucet control, a lap board 27 inches from the floor, and
Housing Assistance Payments Program. Final regulations
a bathtub with a seat at one end.
are being developed for the Section 202 program.
For several years six units were leased to Goodwill
The statutory definition for Section 231 and Section
Industries located across a highway from the building,
202 programs, as amended by the Housing and Commu-
but neither the nearby presence of Goodwill nor the use
nity Development Act of 1974, provides that a person
of the apartment units developed any significant admin-
shall be considered handicapped if such person is
istrative links between the two.
determined, pursuant to regulations issued by the
Secretary, to have an impairment which: (1) is expected
Pilgrim Tower
to be of long, continued duration, (2) substantially
impedes his ability to live independently, and (3) is of
This building was sponsored by the Pilgrim Lutheran
such a nature that such ability could be improved by
Church of the Deaf in Los Angeles. Opened in 1968, the
more suitable housing conditions. A person shall also be
112 units were built with a Section 202 direct loan with
considered handicapped if such person is a develop-
the aim of serving primarily the deaf and hard of
mentally disabled individual as defined in Section 102(5)
hearing. Seven out of every eight current residents are
of the Developmental Disabilities Services and Facilities
deaf or hard of hearing. Architecturally, the building is
Construction Amendments of 1950.
designed essentially for the elderly.
17
The sponsor developed a significant signalling system
Highland Heights
that has been studied frequently since then. A control
panel in the manager's office has indicators for each
Highland Heights opened in 1970, under the aegis of
apartment. The panel turns on bright 6-inch high lights
the Fall River, Massachusetts, Housing Authority, and
in each apartment that pulse on and off to indicate that
with the very strong assistance of the adjacent Hussey
the manager is signalling. Thus sign, lled, the resident
Hospital. This rehabilitation hospital helped provide an
turns the TV on to a closed channel and sees the
orthopedic orientation to the 208-unit building that has
manager signalling in the sign language of the deaf. In
made it almost the housing component of a very
turn, residents can use the system for reverse signalling.
effective, if older, medical facility. The two buildings are
Cost of the system was $22,000, which would have been
connected by an underground causeway, but more
less if installed during construction.
important, the hospital provides staffing for the build-
The large community room on the ground floor
ing's clinic and medical services across a wide range for
presents a graceful, fascinating spectacle, with residents
the residents. In turn, hospital patients, once they are
signalling to each other in sign language in total silence.
rehabilitated, can be admitted to the building when
The degree of personal interaction is high, but the
vacancies occur.
building's sound level is, of course, very low. All building
Highland Heights has all the features of Center Park,
personnel can use sign language.
but also provides handrails; lowered toilet seats conven-
ient for wheelchair users; correctly located phone jacks;
Center Park Apartments
external elevator indicators; convenient light switches;
smooth internal walls; adequate sleeping areas in the
This Seattle, Washington, project opened in October,
efficiencies; and excellently designed public space.
1969, with 150 units, all for the handicapped. Here the
Highland Heights also provides a unique emergency
architects carefully studied the lessons of Vistula Manor,
feature: When the emergency switch in the bedroom or
adding a number of needed features. They provided
bathroom is activated, a light goes on outside the
elevators large enough to hold six wheelchairs; electric
apartment, a bell rings on the floor, and gongs go off in
the ground floor clinic and the Rehab Clinic at the
door plates for entrances; sink faucets at the side of the
Hussey Hospital.
sink; adjustable sink counters; folding closet doors;
higher electric outlets; emergency door pulls or wands;
Even more significant than the design is the operation
sliding bedroom and bathroom doors; lever door handles
of the facility. It has become a focal point of commu-
useful for arthritics and persons with hand, arm, and
nity activity around the needs of the handicapped and
shoulder limitations; ball-bearing kitchen drawers.
elderly, with a host of community services pouring in to
This public housing project was additionally spon-
meet resident needs. So, for instance, the Fall River
sored by the Seattle Handicapped Club, which ulti-
Council on Aging is located in Highland Heights. Hot
mately helped fund a day center building adjacent to
meals programs, surplus commodities, aid referrals, all
Center Park. This provides space and facilities for a wide
have emerged as a result of this presence. But in
range of community activities. There is an attached
addition, the District Nursing Service, a Golden Age
18-car garage in Center Park, which is useful for
Club, social workers, therapists, a sewing group, arts and
residents with certain more limiting physical conditions.
crafts, beauty and barber shop, choral and music groups,
all have become part of resident services, whether
provided by the Hussey Hospital, outside agency service,
Walter B. Roberts Manor
volunteers, or simply the normal social interaction that
appears in a healthy social organism. Thus, despite the
The only project for the blind under HUD program-
unusual range of physical limitations of the residents,
ming was opened in 1969 in Omaha, Nebraska. It's a
their effective functioning is at a high level because of
small, 42-unit building developed under the 221(d)(3)
fine building programming.
program in Omaha. The local Association for the Blind
sponsored this building, which is not design modified in
New Horizons
any way to accommodate blind persons. The only items
adaptive to the needs of the blind are pieces of Dymo
This 100-unit project opened in July, 1972, in Fargo,
tape placed next to the elevator buttons, and the washer
North Dakota. The architects visited all the prior
and dryer keys with letters punched out in Braille.
projects, analyzed all the design problems covered
Names on mailboxes and on doors are punched out on
previously, and came up with what probably is the best
the tape in English. The building, in essence, represents
physical structure for the handicapped in the United
the philosophy that the blind should adapt to the
States. Rooms are ample, bathrooms are well laid out,
techniques of the sighted, but the question could be
shallow sinks are arranged so wheelchairs can be moved
raised whether this applies in a building devoted largely
underneath comfortably; three central tub rooms are
to the blind and the partially sighted. Thus, the further
available for those who need assistance in bathing;
question is: Are there disabilities which, when grouped,
smoke detectors and sprinkler system are installed; wall
produce additional difficulties in living?
ovens provide a side-hinged door and a pull-out shelf
18
below the door; and there is a pull-out cutting board,
paraplegic and quadriplegic patients are rehabilitated,
with a mixing bowl cutout. Only the elevators and the
use powered wheelchairs and speaker-phones, press
rehab room are small. Community facilities in the
buttons, dial phones, dictate letters, and perform all
building are excellent and there is a full joint kitchen,
kinds of light off ce and daily activity. It is a tribute to
from which a number of residents have hot meals
brains, ingenuity, persistence, professional skill, and
delivered at lunch time, through a nearby meal service. A
above all, superhuman faith.
shopping center exists across the highway in front of the
building. The parking area is entirely covered.
d. Research into housing the handicapped
In brief, the building was designed primarily with the
wheelchair bound person in mind, and, except for
The existing supply of housing units for the handi-
elevators, is a profound success.
capped, most of which are included in projects for the
elderly, only begins to meet the housing needs of our
Independence Hall
handicapped population. Furthermore, research is
needed to develop an understanding of the needs which
This is the largest of the projects for the handicapped,
the handicapped have in making use of the built
with 292 units on two floors. Opened in January, 1973,
environment. There also is a need to evaluate the
in Houston, Texas, it is a two-story, sprawling complex
function and designs of the units already constructed in
on a 10-acre site with garden-type, interconnected
meeting the housing needs of the handicapped. HUD's
buildings, in the form of three diamonds, linked at their
Office of Policy Development and Research (PD&R) has
sides. Two long double ramps, centrally located, lead to
begun a program of research along both lines.
the second floor, but there are also two small elevators
The lack of housing which meets their needs denies
at each end of the complex. The project includes lever
handicapped persons the independent life they want and
door handles, floor plate openers at several locations for
are capable of living. This situation is exacerbated by
public doors, drive-in showers with support bars, wide
restrictions on the use of outdoor space and a lack of
doors throughout, emergency buzzer system to the main
accessibility to public transportation.
office, shallow kitchen sinks with space underneath for
PD&R has undertaken several research efforts leading
wheelchairs, low kitchen shelving, under-the-burner
to a built environment that will allow the handicapped
oven, crafts and workshop space, library, and sewing
person to be integrated into society to the extent he or
room.
she desires and is capable of, with a minimum of
Independence Hall is unique in that Goodwill Indus-
architectural barriers or other man-made impediments.
tries sponsored the project. It has close ties to the
HUD has sought and received the advice and guidance of
Goodwill plant. Many employees are housed and, most
the Department of Health, Education, and Welfare, the
significant, everyone who runs the building is handi-
Architectural and Transportation Barriers Compliance
capped, including administrative, clerical, and mainte-
Board, the Committee on Barrier-free Design of the
nance staffs. There is also a strong link to available
President's Committee on Employment of the Handi-
hospital and medical services, to say nothing of the
capped, the American Institute of Architects, and the
normal social services utilized by the Goodwill process.
National Society for Crippled Children and Adults.
To date, PD&R has completed two fairly recent
Creative Living
studies. The first took place in one of the eight
HUD-sponsored buildings for the handicapped, Highland
This building in Columbus, Ohio, is unique as the
Heights in Fall River, Massachusetts. The Fall River
only one designed for paraplegics and quadriplegics.
Housing Authority completed a study in 1972 of the
Built on land leased from Battelle Memorial Institute for
effects of residence in a sheltered but noninstitutional
$1 a year, this Section 236 project opened in October,
housing situation on their population of severely handi-
1974, and is a barrier-free 18-unit one-story building
capped adults. Results showed that such an environment
designed for the wheelchair-bound person. Doors are
proved to be a positive experience, and that over the
pressure-activated; there are special plumbing features;
short run residents improved in terms of morale and
kitchen cabinets are 30 to 40 inches off the floor;
physical functioning.
electrical outlets are about 30 inches high; door openings
Because HUD believes that these individuals could
are never less than 32 inches wide; clothes racks no
better utilize environments thoughtfully designed to
higher than 48 inches.
accommodate their limitations, the American Society of
One section of the building has a dayroom for
Landscape Architects Foundation (ASLAF) was
students from the adjacent Ohio State University Medi-
awarded a two-year $107,000 contract to develop a
cal School who work as attendants on an hourly basis,
guide to barrier-free site design. The results of this study
serving the mobility needs of the residents. These range
are available from HUD and the Government Printing
from toileting and dressing in the morning and evening
Office in two separate volumes.
to turning at night to avoid bedsores.
One is an illustrated manual for environmental
Creative Living is a by-product of a particularly fine
designers faced with the need to design accessible sites
Department of Physical Medicine at Ohio State. Here
for both public and private facilities. This guide,
19
Housing Projects for the Handicapped
Year
Size/
Specially
Name
Location
Sponsor
Opened
Cost
Group
Served
Vistula
400 Nebraska Avenue
Toledo Metropolitan
1967
$3,800,943
164
Handicapped and
Manor
Toledo, Ohio 43602
Housing Authority
elderly
Pilgrim
1233 South Vermont Avenue
Pilgrim Lutheran
1968
$1,723,000
112
Deaf and hard of
Tower
Los Angeles, Calif. 90006
Church of the Deaf
hearing elderly
Center Park
825 Yesler Way
Seattle Housing
1969
$2,596,421
150
Handicapped and
Apartments
Seattle, Washington 98104
Authority
elderly
Walter B.
1024 South 32nd Street
Omaha Association
1969
$ 422,900
42
Blind and partial
Roberts Manor
Omaha, Nebraska 68105
for the Blind
sighted elderly
Highland
1197 Robeson Street
Fall River Housing
1970
$2,942,204
208
Handicapped and
Heights
Fall River, Mass. 02722
Authority
elderly
New Horizons
2525 North Broadway
Fargo Housing
1972
$1,947,875
100
Handicapped
Fargo, North Dakota 58102
Authority
Independence
Airline Dr. at Burress St.
Goodwill Industries
1973
$3,179,800
292
Handicapped and
Hall
Houston, Texas
elderly
Creative Living
445 W. 8th Avenue
Creative Living, Inc.
1974
$ 333,100
18
Quadri- and
Columbus, Ohio 43215
paraplegics
Barrier-free Site Design, covers the design and planning
standard which would cover public buildings, dwelling
of site features such as parking lots, walks, ramps, play
units, and related exterior spaces. The School of
areas, pools, street furniture, lighting, signage, and
Architecture at Syracuse University was chosen to
restrooms.
administer the program of research and testing necessary
The second, available late this fall, is a compendium
for developing the new standard.
of existing design criteria and construction standards
The results of the two-year, $256,000 effort which
used in the project. It provides to the designer compre-
will be completed in June, 1976, will be a performance
hensive information about existing barrier-free related
standard that emphasizes the concept of adaptability. It
legislation, standards, guidelines, etc.
will reflect the state of the art in accessibility not only in
PD&R also currently has several projects related to
the United States, but also in the countries in Northern
the needs of the disabled under way. In 1961, the
Europe, which have a great deal- more experience than
American National Standards Institute (ANSI) affirmed
the United States in housing for handicapped persons
a set of standards (ANSI A117.1) for making buildings
and which have met with great success in the use of
accessible to and usable by the physically handicapped.
performance standards and in the integration of the
Since that time the HUD Minimum Property Standards,
handicapped into their community. The new standard
Public Law 90-480, and many state accessibility laws
will be submitted to ANSI for adoption and to HUD for
and local building codes have specifically referenced the
inclusion in the Minimum Property Standards.
ANSI Standard or have been based upon it. However, as
The new ANSI Standard also will incorporate the
stated in a letter to HUD from the President's Commit-
results of the recently completed site design study by
tee on Employment of the Handicapped, one of the
the American Society of Landscape Architects Founda-
sponsors of the original standard, it is widely
tion.
recognized by professional designers and by administra-
The first year's work on the ANSI project resulted in
tors that the document is inadequate in defining
a comprehensive state-of-the-art review which is cur-
accessible multifamily housing. Kitchen, bathroom, and
rently being evaluated for possible publication.
living space design specifications are not included. Code
St. Andrews Presbyterian College came to HUD with
authorities, legislators, housing developers, and city
a problem and with a potential solution to be tested.
planners are constantly requesting such informa-
Located on a barrier-free campus in Laurinburg, North
tion
"
Carolina, the college has had considerable experience
In response to a request from the President's Commit-
and success in educating the severely handicapped and in
tee and from the National Society for Crippled Children
placing them in jobs. However, many of their graduates
and Adults-the sponsors of the original standard-HUD
were unable to accept the positions offered because of a
agreed to begin developing a revised and expanded ANSI
lack of suitable housing within commuting distance. The
20
school adapted four standard mobile homes from the
accessible to the physically handicapped on the same
surplus disaster relief stock for occupancy by handi-
basis as public housing, even though Public Law 90-480
capped students. At the end of the two-year $204,000
does not apply to such projects. Also, all housing for
project, a fifth demonstration unit incorporating as
elderly must be accessible.
many of the features as feasible will be available for
The mandatory MPS, consisting of three volumes, one
display.
for single family housing, one for multifamily housing,
The project team is giving special attention to safety
and a third for nursing and intermediate care facilities,
factors, and is also doing psychological testing to
are supplemented by a nonmandatory volume titled
determine the effects of this sudden increase in inde-
Manual of Acceptable Practices. These criteria are
pendence and in responsibility upon persons who previ-
intended to provide a sound basis for determining the
ously led relatively sheltered, protected lives. At first the
acceptability of HUD-associated housing. They are used
students living in the demonstration units experienced
by the Farmers Home Administration, Veterans Admin-
what Dean Rodger Decker, project director, describes as
istration, and some military housing programs.
a "halo effect." Because almost all of the St. Andrews
Originally the MPS were couched in prescriptive
students live in campus dormitories and the four
language and were directed to specific programs. In 1974.
students in the demonstration mobile homes are living
they were reissued. The new documents are written in
independently, the handicapped students were among
performance language to allow greater design and con-
the most popular on campus! All the students are
struction freedom to meet local needs and to promote
delighted with their homes and have experienced little or
more innovative design. They now relate to building
no problems with them.
types rather than to specific programs. In this way the
Fall River is currently undertaking a three-year,
three new volumes were able to replace eleven sets of
$97,000 follow-up study which increases the size of the
program-oriented standards. Hence, HUD does not main-
survey sample so that it can be subdivided by type and
tain a separate book or set of criteria for projects of
degree of disability. This phase of the research will seek
housing for handicapped persons. Material pertinent to
to determine if persons with different types or degrees
design for handicapped persons is contained in-all three
of disability benefit differently from residence at High-
books-depending on whether the building type used is a
land Heights. The results of the study will enable
detached dwelling, row or apartment house, institutional
managers to develop a rational set of tenant selection
type building, or other. This distribution of criteria is
procedures for environments such as Highland Heights.
consistent with the conviction that handicapped individ-
An additional, companion piece of research supported
uals should not be isolated into separate projects
by HEW is also looking at the original sample of
especially designed for them, but that they should be
respondents over a five-year period to see whether the
integrated into housing for nonhandicapped families.
short-term results found by the initial study continue
By not placing criteria for handicapped persons in a
over longer periods of time.
separate MPS, HUD obviated the need to repeat all of
HUD intends to continue its research on improved
the criteria for construction materials and workmanship
housing and community environments for the handi-
and much of the site and space planning and other
capped. A study of the effects of integrating the
design criteria which are the same regardless of the
handicapped into all housing, not just elderly housing or
physical and mental attributes of a project's occupants.
buildings designed for the handicapped, is planned for
HUD believes the distribution of specific criteria for
the next two years. An evaluation of small group homes
handicapped persons throughout the three MPS's is more
for the developmentally disabled will also be sponsored.
effective than making a single reference to American
In addition, HUD hopes to sponsor demonstrations and
National Standards Institute A117.1 and stating that all
evaluations of the design guidelines developed by the
facilities must comply with it. Thus where criteria for
previously described American Society of Landscape
amount, size, and location of parking are given for
Architects Foundation study.
family housing, the corresponding standards for handi-
capped persons are given. Where criteria for walks are
e. HUD Minimum Property Standards (MPS) for
given, corresponding special requirements for handi-
handicapped persons
capped persons are given, such as maximum gradients
and prohibition of steps for stepped ramps between a
Although Public Law 90-480 was implemented in
principal entrance and a vehicular unloading zone. HUD
HUD's programs by Part 40, Title 24 of the Code of
does not repeat criteria which are the same for handi-
Federal Regulations and by revisions to handbooks for
capped and nonhandicapped persons. For example, slip
various programs-Low-Rent Public Housing, College
resistant surfaces are required on all walks.
Housing, Open Space and Neighborhood Facilities-the
This arrangement permits HUD to invoke A117.1 for
documents most affecting the design and construction of
a specific feature when that standard-is adequate and to
HUD-related residential projects probably are the Mini-
set up its own criteria when it is not. A117.1 was written
mum Property Standards.
for public, not residential buildings, so it contains no
Through the Minimum Property Standards HUD
data on kitchen design, showers, bathtubs, and such life
requires mortgage-insured multifamily projects to be
safety features as number of exits, flame spread, or
21
emergency power. These items are detailed in the MPS.
ANSI standards, supplemented by HEW criteria, are
Other criteria for handicapped persons in excess of
used to provide accessibility for the physically handi-
material in A117.1 which are found in the multifamily
capped who may be living or working at the Indian
MPS includes accessibility to beds, night lights,
health facilities.
minimum hall widths for wheelchair users, prohibition
of abrasive wall finishes, nonscald valves in showers, and
emergency lighting systems. This material is supple-
Veterans Administration (VA)
mented by recommendations in the Manual of Accept-
able Practices pertinent to space allocation for social,
A. VA Home Loans
recreational, and other common functions, wheelchair
dimensions, clearances in common dining areas for
a. Authorization
wheelchair occupants, and entrance facilities-automatic
door opener, view panels, and vestibules. In short, HUD
Chapter 37, Title 38, U.S. Code, contains the
criteria are more complete and exhaustive than those
authorization for, the VA Home Loan Program or, as it is
given in A117.1 In addition, they are constantly being
most commonly called, the "GI Home Loan Program."
reviewed and updated to take advantage of the most
The objective of the program is to assist veterans of
recent technological advances, experience, and research-
World War 11, the Korean and post-Korean conflict
both foreign and domestic.
periods, certain servicemen, and unremarried widows of
veterans to obtain credit for the purchase, construction,
or improvement of homes on more liberal terms than is
Department of Health, Education,
generally available to nonveterans.
and Welfare (HEW)
b. Purpose
A. Authorization
VA may guarantee or insure home loans made to
HEW has no specific authorization to provide housing
eligible veterans for any one of these purposes: (a) to
for the handicapped.
buy or build a home; (b) build a farmhouse on land he
owns; (c) repair, alter, or improve a farmhouse or other
B. Purpose
dwelling he owns; (d) buy a one-family residential unit
in an approved condominium housing project; (e)
Under the public assistance titles of the Social
refinance a mortgage or other lien on a house owned by
Security Act, grants to states are provided for financial
the veteran. VA may also guarantee loans for the
assistance to needy families with children, and in Guam,
purchase of new and used mobile homes.
Puerto Rico, and the Virgin Islands to needy aged, blind,
and disabled for food and shelter, among other things.
C. Scope
These programs are incidental to the other purposes of
the acts quoted.
Since the inception of the program in 1944, VA has
guaranteed approximately 9,000,000 home loans for an
C. Eligibility
aggregate principal amount exceeding $109 billion.
Financial assistance is available only to those eligible
d. Eligibility
for the financial assistance under the public assistance
titles. Only the staffs of Indian health facilities are
While VA may guarantee any loan to all classes of
provided housing.
eligible veterans, it may insure loans made only to World
War II and to Korean conflict veterans by lenders subject
D. Scope
to state or Federal examination and supervision. In all
cases the borrower must own and occupy, as his or her
No data are collected on the housing and living
home, the housing unit securing the loan. The nature
arrangements that arise incidental to these acts since the
and condition of the unit must be suitable for dwelling,
individuals involved make their own housing arrange-
and the loan may not exceed a VA determined reason-
ments.
able value of the property.
The applicant eligibility criteria for "GI Home
E. Standards
Loans" is: (a) veterans of World War Il or the Korean
conflict who served on active duty 90 days or more and
Under the assistance provisions of the Social Security
were discharged or released under conditions other than
Act, there are no minimum housing standards for
dishonorable; (b) veterans who served on active duty
recipients of the. assistance, and there is no specific
181 days or more, part of which occurred after anuary
requirement that housing be accessible to the physically
31, 1955, and who were discharged or released under
handicapped.
conditions other than dishonorable; (c) any veteran in
22
the above classes with less service but discharged with a
d. Eligibility
service connected disability; (d) unremarried widows and
widowers of otherwise eligible veterans who died in
In order to be eligible for a specially adapted housing
service or whose deaths were attributable to service
grant, a veteran must have a permanent, total, and
connected disabilities; (e) service personnel who have
compensable disability, based on service after April 20,
served at least 181 days in active duty status; (f) spouses
1898, due to (a) loss or loss of use of both lower
of members of the Armed Forces serving on active duty,
extremities to an extent precluding locomotion without
listed as missing in action, or as prisoners of war and
braces, cane, crutches, or wheelchair; or (b) blindness in
who have been so listed 90 days or more.
both eyes, having only light perception, plus loss or l'oss
of use of one lower extremity; or (c) loss of use of one
e. Standards
lower extremity with residuals or organic disease or
injury affecting balance or propulsion so as to preclude
VA has adopted as its construction standards the
locomotion without resort to a wheelchair. It must be
HUD Minimum Property Standards, One and Two
medically feasible for the veteran to reside in the
Family Dwellings, 4900.1.
proposed or existing housing unit and in the locality.
B. Specially adapted housing
c. Standards
a. Authorization
When it is determined that it is medically feasible for
an eligible veteran to reside in a specially adapted home,
The authorization for the VA to assist certain
the veteran is contacted by a representative from the
disabled veterans in acquiring suitable housing units with
local VA office who is a specialist in the field of
special fixtures and facilities made necessary by the
specially adapted housing to counsel and make sugges-
nature of the veteran's disability is contained in Chapter
tions and recommendations to the veteran at every stage
21, Title 38, U.S. Code.
to help him/her obtain a specially adapted house. The
counsel includes providing sample housing plans and
b. Purpose
helping the veteran get architectural services, contrac-
tors, bids, and any other related service necessary to
The VA Specially Adapted Housing Program provides
assure that a satisfactory specially adapted house is
50 percent of the cost to the veteran of the housing unit,
provided. As a result of its experience with specially
land, fixtures, and allowable expense, not to exceed
adapted housing, the VA has developed the following
$25,000. The money may be used to assist in (a)
special requirements which, of course, may be modified
construction of a suitable home on land to be acquired
to meet individual needs:
by the veteran; or (b) construction of a home on suitable
(a) At least two ramps suitable for egress, one of
land owned by the veteran; or (c) remodeling an existing
which shall be located so as not to expose the veteran to
home if it can be suitably adapted; or (d) application
a potential fire hazard, such as placement necessitating
against an outstanding mortgage for a specially adapted
passage through a kitchen or garage or utility room
home owned by the veteran.
containing heating equipment. Ramps must be con-
In computing the amount of a grant payable to the
structed of fireproof material, shall be permanently
veteran, the housing unit cost may include incidental
installed, shall be treated to prevent slipping when wet,
expenses, such as connections or extensions to public
and the slope shall not exceed 8 percent. The minimum
facilities, customary attorneys, architect, loan closing,
width acceptable is 3 feet, 6 inches, and the railings must
and other service fees. Restrictions on the use of a grant
be provided if the height and length of the ramp indicate
are: (a) if a loan is necessary to supplement a grant,
any question of a hazard. Each ramp must be headed at
monthly repayments and the cost of maintaining the
the top by a level platform which is freely accessible
housing unit must bear a proper relation to the veteran's
from the ramp. Ramp platforms must be generous in an
present and prospective income; (b) the housing unit
area to allow for turning the wheelchair and equipped
must be suitable for the veteran's special dwelling needs;
with protective railings if the height of the platform
and (c) the veteran's acquired interest in, or title to, the
presents a potential hazard. There shall be no difference
property must meet standards generally acceptable to
in elevation between the interior floor level and point of
informed real estate market participants in the locality
ramp entry.
of the property.
(b) All doorways shall be at least 36 inches wide.
(c) Halls shall be a minimum of 4 feet wide.
C. Scope
(d) A garage or carport should be of sufficient
width to allow unrestricted wheelchair maneuverability
During the 27 years of the VA specially adapted
alongside the car.
housing program existence more than 13,500 veterans
(e) Passageways between the home proper and the
have been aided at an expense of approximately $154
garage or carport should be sheltered to prevent expo-
million.
sure of the veteran to inclement weather.
23
(f) At least one bathroom convenient to the
be approved as a general rule. Requests for waiver to
veteran's bedroom should contain very generous floor
permit installation of low pile, closely knit carpet will be
areas providing free wheelchair maneuverability, with
considered on an individual basis. Such requests must be
placement of all fixtures in a manner permitting the
supported by a statement in writing from a VA
veteran unimpeded access to each fixture. Bathroom
physician as to the veteran's ability to maneuver on it or
flooring material should be nonslip under both wet and
that it will not impede his/her mobility.
dry conditions. Wash basins of the hung type, rather
than pedestal, shall be affixed at a height enabling the
wheelchair to ride below the fixture to allow close
Department of Agriculture
approach for washing and shaving convenience. Wash
basin drainpipes should be installed with the view to
The Farmers Home Administration (FmHA) does not
minimizing the possibility of abrasions. A mirror at
have a housing program specifically for the handicapped.
suitable level of use from the wheelchair must be
It does, however, administer three housing programs
provided and may be achieved by a lowered medicine
which may be included in any report on the status of
cabinet to which the veteran is to have access. Faucets
issues and direction of housing for the physically
for the tub and shower also must be accessible from the
handicapped. FmHA does not have records as to the
wheelchair for water temperature control before, as well
number of physically handicapped individuals occupying
as during, immersion. Adequate thermostatic controls
individual or rental housing units financed by the
should be installed to avoid sudden change in the water
agency.
temperature. Adequate grab bars, capable of bearing
weight and conveniently placed, must be installed for
A. Low to moderate income housing loans
the tub and shower. Stall showers must be large enough
to allow for a built-in bench, if desired. There shall be no
a. Authorization
curb between the stall and bathroom (floor drain can be
placed in a back corner of the stall), and the shower stall
These loans are authorized under Section 502 of Title
opening must comply with the width requirement. The
V of the Housing Act of 1949. The objective of this loan
toilet fixture or seat should be raised, if necessary, for
program is to assist rural families to obtain decent, safe,
the veteran's convenience; armrests, installed in a man-
and sanitary housing and related facilities. These loans
ner to support the veteran's weight in transferring, must
are made to eligible applicants to buy, build, or improve
be included, and provision should be made for a suitable
homes located in rural areas; to provide necessary and
back support. Where veterans have a decided preference
adequate sewage disposal facilities for the applicant and
for a shower installation, serious thought nevertheless
his family; and to buy a site on which to place a dwelling
should be given to a tub installation as well.
for the applicant's own use. Housing debts may be
(g) All hot water pipes, steampipes, room radia-
refinanced only under certain circumstances.
tors; or similar items which may constitute a hazard
insofar as burns, abrasions, etc., are concerned, should
b. Purpose
be concealed or properly covered.
(h) Wall switches and electrical outlets should be
Dwellings financed under this program for a family
within reach from the wheelchair-minimum 18 inches
with low or moderate income must be modest in size,
and maximum 48 inches from the floor. Fuse boxes,
design, and cost. In addition, the applicant must be
thermostats, and other utility and appliance controls
without sufficient resources to provide, on his own
should be within reach from the wheelchair. Windows
account, the necessary housing or related facilities and
should be operable from the wheelchair. Automatically
be unable to secure the necessary credit from other
operated garage doors are a great convenience. Direct
sources upon terms and conditions which he reasonably
control activated by key or button is more satisfactory
could be expected to fulfill.
than remote control by radio or light beam.
(i) An automatic smoke detector, which may be a
C. Eligibility
single-station alarm device, shall be installed in each
living unit near the bedrooms. Such detectors shall
To be eligible for a Section 502 rural housing loan,
comply with the standards of the Underwriters' Labora-
the applicant must be the owner or when the loan is
tories Standard No. 168 for photoelectric type and No.
closed become the owner of a home in a rural area. He
167 for the ionization type. Detectors shall be labeled
must also be a citizen of the United States or reside in
indicating compliance with the above standards. All
the United States after having been legally admitted for
smoke detectors shall operate from the dwelling's
permanent residency, have adequate and dependably
electrical circuit without a disconnecting wall switch and
available income to meet his operating and family living
be permanently mounted to a standard electrical outlet
expenses including taxes, insurance, maintenance, and
or junction box on or adjacent to the ceiling.
repayment on debts including the proposed loans.
(j) Carpeting and rugs impede wheelchair maneu-
Interest credits may, under certain conditions, be
verability. Accordingly, installation of carpeting will not
granted to lower income families which will reduce the
24
effective interest credit rate paid to as low as one
ing may consist of apartment buildings, duplex units, or
percent depending on the amount of the loan and the
individual detached houses. Funds may also be used to
size and income of the family.
provide recreational and service facilities appropriate for
use in connection with the housing and to buy and
d. Scope
improve the land on which the buildings are to be
located.
During fiscal year 1976, FmHA expects to process
more than 100,000 initial and subsequent Section 502
C. Eligibility
loans for approximately $1.927 billion compared to last
year's $1.9 billion.
Applicants may be individuals, consumer coopera-
tives, trusts, nonprofit corporations, profit corporations,
B. Very low income housing repair loans
associations, state or local public agencies, partnerships,
or limited partnerships. With the exception of state or
a. Authorization
local public agency, they must be unable to provide the
housing from their own resources or with credit ob-
These loans are authorized under Section 504 of Title
tained from private sources. Applicants must, however,
V of the Housing Act of 1949, as amended.
be able to assume the obligations of the loan, furnish
adequate security, and have ability to provide manage-
b. Purpose
ment and to maintain and operate the housing for the
purpose for which the loan is made.
The loans give very low income rural homeowners an
opportunity to make essential minor repairs to their
d. Scope
homes to make them safe and to remove health hazards
to the family or the community. This could include
There is an authorization for $146 million to be
repairs to the foundation, roof, or basic structure as well
expended for rural rental housing loans in fiscal year
as making the housing more convenient for a physically
1976 as compared to $296 million in fiscal year 1975.
handicapped person. Funds may be included in these
loans to provide a water and waste disposal system for
the dwelling.
Department of Defense
C. Eligibility
A. Authorization
The maximum loan under this program is $5,000,
Annual Military Construction Authorization Acts
which can be repaid in up to 20 years. The interest rate
is one percent per annum. Applicants must own and
B. Purpose
occupy the dwelling and be without sufficient income to
qualify for a Section 502 loan yet must have sufficient
The Department of Defense (DoD) programs for
income to repay the loan.
housing may be divided into two general categories,
housing for bachelor personnel and housing for married
d. Scope
personnel.
Housing for bachelor personnel enlisted and commis-
FmHA has an allotment of $20 million available for
sioned, is not designed to be accessible to the handi-
such loans and has obligated approximately $4.5 million
capped. Public Law 90-480 excluded from its provisions
in loans to approximately 2,500 applicants during each
"
any building or facility on a military installation
of the past two fiscal years.
designed and constructed primarily for use by able-
bodied military personnel and, as these facilities are
C. Rural rental housing loans
designed and constructed exclusively for able-bodied
a. Authorization
military personnel, they are not covered by the law.
Housing for married personnel also is not specifically
FmHA is authorized under Section 515 of Title V of
designed to be accessible to the handicapped. The ratio
the Housing Act of 1949 to provide economically
of handicapped to nonhandicapped living in military
designed and constructed rental housing and related
family housing may be somewhat less than that of the
facilities suitable for independent living or rural resi-
general population since at least one member of all such
dents.
families would be an able-bodied military person. Even
the ratio of handicapped to nonhandicapped among
b. Purpose
military dependents would normally be less than the
general population. This is so because the retirement age
The loans can be used to construct, purchase,
for military personnel ranges from under forty years to
improve, or repair rental or cooperative housing. Hous-
about the mid-fifties. Thus, the aged as a group are not
25
found among the families occupying military housing.
new construction to modernization and improvement of
Nevertheless, there are some handicapped individuals
existing older units is expected.
among military families. When a family with a handi-
Normally DoD does not build houses for civilian
capped member is assigned to a DoD owned house, DoD
employees. In the case of military necessity where a key
normally handles any indicated modification to the
or essential civilian employee is required to live on a
house at that time. This is of course an option which is
particular installation, that employee may be assigned to
available to the military which might not be economi-
a military house. Those situations do not frequently
cally feasible for a family seeking to buy a private
occur.
dwelling on the open market.
C. Eligibility
E. Standards
Military housing programs are limited programs serv-
ing very specialized populations. They are, therefore, not
General application of the principles of design for the
handicapped to the military housing programs would
directly comparable with the overall housing market.
result in less than average, and, in the case of bachelor
D. Scope
housing, no benefit to the handicapped.
However, there are a number of design proposals that
The scope of these programs varies from year. to year
have been put forth to assist both the handicapped and
depending on their overall program priority. The fiscal
nonhandicapped individual. Typical of these would be
year 1976 program will have about 3,000 family units
the elimination of door knobs and latches in favor of
and the bachelor housing program foresees the construc-
levers or other devices more easily usable by all persons.
tion of new housing spaces for approximately 26,000
This, a very productive area for assistance to the
personnel. Future programs are expected to be compar-
handicapped, exists in the promotion of such design for
able. However, a gradual shift of emphasis away from
all housing.
26
APPENDIX B*
*From: McGaughey, Rita, Position paper on "Adequate Residential and Community Programs for Persons with Disabilities," National
Easter Seal Society for Crippled Children and Adults, March 1976.
27
Table A
Federal Programs Financing Services and Housing to Handicapped
ATTACHMENT A
Payments to Service
Providers
Direct Payments to
Handicapped
State Plan Required
Housing Assistance
Subsidized
Private Sponsors
Private Nonprofit Sponsors
Congregate Housing
Special Design
Rural Only
Special Project Grants
Developmentally Disabled
(Mental)
Physically Disabled
Mentally and Physically
Disabled
Elderly Handicapped Only
Formula Grants to States
Delivered Services,
Payments for
Facilities Construction
Developmental Disabilities Services &
Construction Amendments 1970
X
X
X
X
X
X
X
Developmental Disabilities Act 1975 (Pending)
X
X
X
X
X
X
X
Rehabilitation Act 1973
X
X
X
X
X
X
Older Americans Act, III
X
X
X
X
Model Projects on Aging
X
X
x
Grants, Nutrition Program
X
X
X
X
Title XX, Social Security Act
X
X
X
X
X
X
Social Security, Disability Insurance
X
X
X
X
Social Security, Vocational Rehab. Service
X
X
X
Public Assistance, Social Services
X
X
X
X
X
Public Assistance, Maintenance
X
X
X
Supplemental Social Security
X
X
X
Medical Assistance Program-Medicaid
X
X
Medicaid-Hospital Insurance
X
X
X
Medicare-Supplemental Medical Insurance
x
X
Housing & Urban Development Act 1974
Block grants
X
X
X
X
X
X
Public housing
X
X
X
X
Section 8
x
X
X
X
X
X
X
X
X
Technical Assistance
X
X
X
X
Research & Demonstrations
X
X
X
X
x
X
Section 202
X
X
x
x
X
X
X
Section 231
X
X
X
X
X
X
Section 235
x
X
x
X
X
X
Seed Money Advances
X
X
X
X
X
Farmers Home Administration 515 loans
X
X
X
X
X
X
?
28
Table B
Services Provided Handicapped by Federal Programs
SERVICES
Diagnosis
Evaluation
Treatment
Personal Care
Day Care
Domiciliary Care
Spec. Living Arrange.
Training
Education
Sheltered Employment
Recreation
Counseling
Protective Services
Information & Referral
Transportation
Vocational Training
Voc. & Rehab. Devices
Hospitalization
Corrective Surgery
Therapeutic Treatment
Treat. Mental Disorders
Maint. during Treatment
Interpreter Services
Employ. Opportunities
Mobility Train.-Blind
Social Services
Homemaker Services
Health Services
Home Health Aid
Chore Services
Friend. Visiting
Telephone Reassurance
Asst. in Obtain. Hsg.
Adapt. Hsg. & Construct.
$1,500 Homeowner Repair
Nutrition-Meal Delivery
Home Del. Meals
Foster Care
Home Mgmt. & Maint.
Adult Day Care
Health Support
Family Planning
Home & Money Mgmt.
Food, Shelter, Clothing
$250 Home Repairs
Income
Lab & X-rays
Skilled Nursing Home
Extended Care
Outpatient Services
Physician
Counsel to Home Purchas.
Congregate Housing
Escort Services
PROGRAMS
Develop. Disabil. Act 1970
X
X
x
X
X
X
X
X
X
X
X
X
X
X
X
x
Develop. Disabil. Act 1975
X
X
X
X
X
X
X
X
X
X
X
X
x
X
X
X
Rehabilitation Act 1973
x
X
x
X
X
X
X
X
X
X
X
X
X
X
x
X
X
Older Amer. Act. III
X
X
X
X
X
X
x
X
x
X
X
X
X
X
X
29
Model Projects on Aging
X
X
X
X
X
X
X
X
X
Grants for Nutrition
X
X
X
X
X
X
X
Title XX, Soc. Sec.
X
X
X
X
X
X
X
X
X
X
X
Soc. Sec., Vocat. Serv.
X
X
X
X
X
X
X
X
X
x
x
X
X
X
X
X
X
Public Asst. Soc. Serv.
X
X
X
x
Public Asst., Maintenance
X
X
Supp. Soc. Sec.
x
Med. Asst. Medicaid
X
X
x
X
X
X
Medicaid, Hosp. Ins.
X
X
x
X
Medicare, Supp. Med. Ins.
X
X
X
Housing Block Grants
X
X
X
Public Housing
X
Section 8
X
Research and Demonstra.
X
Section 202
X
Section 231
X
Section 235
X
FmHA - 515
X
106 - HA74
X
Soc. Sec., Disability Ins.
X
X
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
UNIQUE PROBLEMS OF HANDICAPPED
MINORITIES
Awareness Paper Prepared By
Ron Wakabayashi, Chairperson
Asian Rehabilitation Services, Inc.
Los Angeles, California
George E. Ayers, Ph.D.
Vice President
Metropolitan State University
St. Paul, Minnesota
Orlando A. Rivera
Associate Vice President for Academic Affairs
University of Utah
Salt Lake City, Utah
Linda Quintana Saylor
Assistant Professor of Nursing
University of Utah
Salt Lake City, Utah
Joseph L. Stewart, Ph.D.
Indian Health Service
Albuquerque, New Mexico
Pub. WHC -- 18
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following individuals who have contributed significantly to this document:
Dr. Edward Wm. Hawthorne, MD., Ph.D.
Dean, The Graduate School For Arts And Sciences
Howard University, Washington, D.C.
William Carlile, MD.
Senior Clinician In Pediatrics
Indian Health Services
Albuquerqe, New Mexico
These Awareness Papers were prepared by subject-matter experts to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. These Papers were not intended to be all-inclusive,
but were designed to stimulate discussions.
TABLE OF CONTENTS
SECTION I
UNIQUE PROBLEMS OF HANDICAPPED ASIAN AMERICANS
Page
Introduction
1
Asian Americans
1
Service Delivery Barriers
2
Population Identification
3
Target Charcteristics
4
Summary
4
Bibliography
4
SECTION II
UNIQUE PROBLEMS OF HANDICAPPED BLACK AMERICANS
Introduction
4
Societal Attitudes
6
Attitudes of Professionals
7
Communication
8
Attitudes of Handicapped Black Americans
9
Summary
10
References
10
SECTION III
UNIQUE PROBLEMS OF HANDICAPPED NATIVE AMERICANS
Introduction
10
Discussion of the Problem
10
Behavioral-Emotional Disorders
12
Communication Disorders: Otitis Media
14
Addendum
14
Historical Perspective
15
State of the Art
15
Bibliography
16
SECTION IV
UNIQUE PROBLEMS OF HANDICAPPED INDIVIDUALS
WITH SPANISH SURNAMES
Introduction
16
Historical Perspectives
17
Cultural Characteristics
17
Cultural Shock and Social Services
18
Recommendations
19
Bibliography
20
INTRODUCTION
according to what we expect of them. The
self-image of the handicapped minority seeking
While it is true that handicapped individuals
help is deeply affected by the manner in which
who are members of racial and ethnic minorities
he/she is treated, the goals the person providing
suffer the same indignities as other handicapped
assistance for him/her, and the expectations he
individuals, there are special and unique prob-
has of him/her. The prejudices these individuals
lems that these individuals face because of the
providing assistance may harbor about the
lack of awareness of cultural differences. For
ethnic minority will damage the success of their
example, pervasive discrimination and segrega-
work with them. Ethnic minorities must be
tion in employment, education, and housing,
viewed as the "whole" man and the prejudices
have resulted in the continuing exclusion of
and misconceptions which are prevalent in our
great numbers of ethnic minorities from the
society must be eradicated.
benefits of economic progress. In addition,
All these factors tend to place handicapped
prejudice and racial discrimination continue to
minorities at increased disadvantages compared
exclude a great number of these individuals from
to other handicapped individuals. This paper
full participation in all aspects of society.
discusses the unique problems of the following
Handicapped people and particularly ethnic
ethnic minority groups in our society; Asian
minorities who are handicapped have two basic
Americans, Black Americans, Native Americans,
psychological needs. One is the need for self-
and those with Spanish Surnames. It is, there-
esteem, i.e., for high self-evaluation, and the
fore, divided into four sections which discuss the
second is the need for social status, i.e., high
problems faced by handicapped ethnic minor-
evaluation by others. As a result of these two
ities from each of the above-mentioned popula-
factors, people have a tendency to develop
tions.
SECTION I
UNIQUE PROBLEMS OF HANDICAPPED ASIAN AMERICANS
INTRODUCTION
guistically distinct communities. The problem of
adequate presentation is further complicated by
Physical and mental disabilities affect Asian
the inadequacy of existing data collection and
Americans in a manner not unlike other citizens
retrieval systems, which fail to segregate or
and residents of the nation. Handicaps of every
collect data on Asian American populations.
variety are experienced within the population.
This situation is a significant symptom of the
Asian Americans are, however, differentiated by
Asian American dilemma, as the invisibility of
their particular cultural backgrounds and his-
the population may typify the degree of interest
tory, as well as their degree of participation in
and concern for serving this population.
the service delivery systems that have tradi-
tionally responded to the needs of the handi-
ASIAN AMERICANS
capped. This paper shall attempt to provide
The multi-ethnic term, Asian American, is
highlights of the major distinguishing factors of
generally inclusive of populations from Asian
the Asian American handicapped populations as
nations. More recently, practice has included
compared to other minority populations.
Pacific Island populations such as Hawaiian,
The presentation of any topic related to Asian
Tongan, Samoan and Guamanian. While the
Americans is intrinsically complex and incom-
initial rationale for these populations to join
plete. The designation, Asian American, has a
together reflected an objective to achieve greater
current and evolving definition that responds to
visibility, the term, too often, has merely been a
the dynamic condition of numerous ethnic
substitution for persons, who could not be
communities that modify the definition. In
designated as White, Black, Native American or
California, where a third of the total population
Spanish Surname. Asian Americans share a
of Asian Americans residing on the mainland
number of common experiences. The majority
United States concentrate, the term may include
population has historically and currently viewed
fifteen or more culturally, ethnically and lin-
them as a monolithic group. This tendency is
1
manifested in the muddled transference of par-
communities became modified to the extent
ticular stereotypes for a particular ethnic group
that Asian Americans became viewed as a
inappropriately from one ethnic group to
"model minority." Accommodation developed
another. Stereotypes or images of more visible
into a community characteristic that sought to
Asian American Groups, such as the Chinese or
be as unobtrusive as possible, and in that manner
Japanese, are very often mixed and undifferen-
avoiding the displeasure of the host culture. In
tiated. Therefore, Asian Americans are perhaps,
effect, much of the energy of Asian American
the least acknowledged of the national minor-
communities was directed toward becoming
ities.
non-threatening and invisible. One aspect of this
The approximate number of two million
effort to achieve invisibility is represented in a
Asian Americans in this country represent a
dominant concern within the ethnic com-
hundred year plus history of immigration and
munities to shed themselves of as many vestiges
resettlement in the United States. Early Chinese
of racial, ethnic, cultural or social differences as
and Japanese immigrants came to American
possible. This phenomenon eventually carries
shores, arriving with the belief that America
over to a developed characteristic behavior that
afforded them the opportunity to better their
promoted the active denial of deviance within
lot. The early experience contains a theme of
the ethnic community. Acknowledgement of
exploitation and maltreatment, which included
deviance or social problems in this setting would
exclusion from citizenship, exclusion from land
endanger the invisibility that the community
ownership, exclusion from particular employ-
sought, and would detract from the model
ment, segregation in schools. The discrimination
minority image that was presented. The Opera-
against early Asian immigrants was codified in
tion of these dynamics in the ethnic community
over 600 laws that were directly focused to
coupled with a generalized mistrust of public
discriminate against them. In this hostile envi-
service delivery systems, operate to impair any
ronment early colonies of Asian Americans
realistic visibility of human needs outside of the
began developing internal devices to provide for
ethnic community.
the welfare of the group. Based upon family,
Within the ethnic communities, the alterna-
church, prefectural or fraternal relationships, the
tive institutions that existed, operated on rela-
ethnic communities developed alternative in-
tively meager resources. From a cultural value
stitutions that paralleled the functions of exist-
perspective, consumers of these services would
ing majority culture institutions. The develop-
be bound by a culturally reinforced reticience to
ment of these institutional structures as a basis
utilize these services. Haji (Japanese for shame)
of survival significantly affects the structure of
would tend to affect the individual and the
service delivery systems that would, today, seek
family because of the stigma attached to the
to outreach to Asian Americans. These institu-
family's inability to resolve the situation. Addi-
tions reflected the mistrust that the com-
tionally, culturally based. requirements for po-
munities developed for public institutions.
liteness, would place immediate hesitations on
Succeeding generations and subsequent Asian
an individual or family to impose upon their
immigrant waves, such as the Filipino and
cultural institutions, knowing that the resources
Korean groups, inherited this experience of
of the institution would be sparse. Under these
mistrust. The incarceration of 110,000 Japanese
internal conditions, handicapped persons within
Americans, most of who were citizens of the
Asian ethnic communities, usually lived in ne-
United States, during the Second World War
glect and isolation.
greatly reinforced a condition where Asian
Americans subtly accepted and recognized a
status as second class citizens. The analogy of an
SERVICE DELIVERY BARRIERS
unwelcome guest residing within the domain of
a hostile host, reflected the situation of Asian
The history and cultural values of Asian
Americans. Consequently, Asian communities
Americans in the context of their settlement in
adopted a strategy of accommodation toward
the United States provides major barriers to
the dominant host culture.
service for the handicapped in these com-
The effect of an attitude of accommodation
munities. The individual and family, the ethnic
toward the host culture created a mixed reac-
community, and the dominant society all main-
tion. The overtly negative stereotypes of the
tain mutually reinforcing barriers to service.
2
Cultural hesitation, family shame and disability
neglected and isolated existence that they ex-
act as barriers on the individual to find means of
perience. The social deprivation of this experi-
remediation or rehabilitation of their condition.
ence adds to the negative self image of the
The development of alternative institutions,
population and, in effect, prevents the affirma-
community attitudes, community image and
tion of efforts to be open to change. Addi-
community self image interfere with the devel-
tionally, many handicapped persons experience
opment of alternative institutions, community
a long term existence under the protective
attitudes, community image and community self
atmosphere of a highly structured role in the
image interfere with the development of service
family. New experiences for this population are
delivery systems appropriate to Asian American
highly threatening, as appropriate role responses
handicapped persons. The invisibility of the
are not structured for the handicapped, as they
needs of ethnic handicapped, the inability to
would be in the existing family setting.
respond to cultural and linguistic needs of the
In responding to this situation, an obvious
ethnic handicapped, and fear and mistrust by
need for community education and community
ethnic consumers, act as barriers for Govern-
validation of the effort is required, before
mental and other major service delivery agents
handicapped persons within the ethnic com-
to interface with Asian ethnic communities.
munity can be identified. As the Asian American
The net result of these factors is that no
communities tend to be institutional rather than
organized effort to address the unique needs of
geographic, the existing community institutions
Asian American handicapped persons was de-
are major targets for re-education and valida-
veloped until very recent times. Two projects
tion. The re-education process for the ethnic
related to the handicapped individuals in the
community is critical in that community insti-
Asian American community began in the Los
tutions, in a large part, affect family attitudes
Angeles area one year apart. In 1971, the
toward allowing and seeking services for family
Oriental Service Center Allowed its Program
members.
Development Specialist to initiate efforts toward
Potential service delivery consumers are more
the development of a sheltered workshop facil-
likely to seek services with family originated
ity that could serve a predominant Asian Amer-
support and validation. Equally significant is the
ican clientele. A year later, the Japanese Com-
users understanding of eligibility requirements,
munity Pioneer Center supported a Japanese
as ambiguity on eligibility may be understood
American Sightless Institute Project that was
by the potential service user as a potential
funded initially through Social Rehabilitation
conflict situation. Conflict situations are likely
Service, Department of Health, Education and
to be avoided by Asian American handicapped
Welfare. The first efforts to reach Asian Ameri-
persons.
can handicapped develops more than 150 years
The experience both of Asian Rehabilitation
after they began arriving on American shores.
Services and Japanese American Sightless Insti-
The experience of these two entities remains
tute, has been the identification of high anxiety
the only basis from which any current insight on
of new clients. This anxiety is somewhat re-
handicapped Asian Americans can be found.
duced if the initial contact remains within a
Conveniently, the sheltered workshop incorpo-
community setting that contains elements that
rated as a separate entity under the name, Asian
are familiar to the person. Bilingual literature,
Rehabilitation Services, and the Japanese Ameri-
bilingual staffing, respect for culturally familiar
can Sightless Institute joined the former agency
protocols and like features greatly enhance the
in early 1975. The following sequence of service
ability of both referral and direct service agen-
delivery concerns represents perspective derived
cies to attract Asian American service users.
from the two interrelated projects.
A complicating caveat in implementing a
target group outreach effort is the variance in
organization of particular ethnic communities.
POPULATION IDENTIFICATION
Generational variables, degree of newness to the
country of community, population numbers,
Because of the historical lack of service
geography and culture are considerations that
delivery to handicapped Asian Americans there
must be assessed for different ethnic com-
has developed an assumption within the target
munities and for different community settings
group that there is little alternative to the
around the country.
3
TARGET CHARACTERISTICS
the State's caseload. The participants in this
project had individual experience or heard
Handicapped Asian Americans reflect their
stories of negative experiences within the state
population as a whole. Demographic detail will
system. The mutual sharing of these "horror
be comparable to the general ethnic population
stories" was enough to prevent any of these
with which the person identifies. However, the
participants from considering utilizing state serv-
historical neglect and reticence to receive service
ices. Only after several arranged interactions
may reflect a greater severity of impairment in
with state staff, did the anxiety of the partici-
the client population. Historically, Asian Ameri-
pants relax sufficiently enough to have a few
cans have developed a mistrust for public service
persons attempt to investigate state services.
delivery agents. Cultural values tend to restrict
the utilization of internal community resources.
SUMMARY
Together, these two factors tend to discourage
service delivery utilization unless no options are
Asian Americans are in the peculiar position
available. Under these conditions, a significant
of having experienced a history that has resulted
portion of the service applicant population is
in the development of individual and com-
likely to have fairly great service needs at
munity values and attitudes that are often
enrollment. This dynamic in the Asian American
incongruent with the service delivery vehicles
population is common in other human service
that exist in the public sector. Until very
delivery systems. Paralleling this characteristic,
recently, the invisibility of the needs of handi-
may be accompanying feelings of shame and
capped Asian Americans concealed the incon-
guilt for having the need for service, and much
gruency of the delivery system. The develop-
anxiety regarding confronting an unfamiliar situ-
ment of two projects in Los Angeles to provide
ation. Anxiety levels may vary depending upon
an interface, bridging the gaps between the
the degree of familiarity and trust that the
handicapped person and the ethnic community,
service provider can demonstrate to the new
and the ethnic community and public service
client. In general, Asian Americans tend to
deliverers, will probably encourage the develop-
develop trust more easily within a setting that is
ment of similar efforts elsewhere. Such efforts
culturally and ethnically familiar. Conversely,
will be necessary if Asian Americans are to be
they are apt to feel greater shame in that same
provided equal opportunities to develop full
setting, assuming a shared value with the service
potenital.
provider of the same ethnicity.
To illustrate the degree of anxiety and appre-
BIBLIOGRAPHY
hension that Asian Americans have toward
public service delivery agents, the entire Japa-
Chomori, Karen; Hatanaka, Carol; Higashioka,
nese American Sightless Institute participant
Cathy; Ishino, Herman; Sakamoto, Kengo;
population made known their intention to resign
Uyekawa, Gary; Wakabayashi, Ron, and Chan,
from activity in the project when the California
Sam Japanese American Sightless Institute
Department of Rehabilitation insisted that the
Project (Final Report). U.S. Department of
participants would necessarily have to become
Health, Education and Welfare, Social Re-
concurrent clients of the Department. Partici-
habilitation Service, Division of Research and
pants resumed project activity only after as-
Demonstration Grants. Grants No. RD-08-
surances that they would not be forced to enter
55949. June 1974.
SECTION II
UNIQUE PROBLEMS OF HANDICAPPED BLACK AMERICANS
INTRODUCTION
helping Blacks who may be physically, mentally,
emotionally, or socially handicapped translate
One of the most pressing areas of challenge
their potential into self-fulfilling social and
confronting contemporary society is that of
economic roles. This challenge is magnified by
4
the pervasive discrimination and segregation in
This new mood, which places emphasis on
employment, education, and housing that con-
self-help in the political, economic, and educa-
tinues to exist. As a result, a great number of
tional spheres as well as racial unity has provided
handicapped Black Americans are excluded from
impetus to the Black American's pursuit of
the benefits of economic progress.
equality.
Handicapped Black Americans have suffered
The Black American's independent quest for
from the same indignities and racist attitudes as
equality and to solve his own problems has
the non-handicapped Black American popula-
precipitated and increased the manifestation of
tion. As noted by Washington (1968), the
racist attitudes among many whites. Some have
United States is institutionally racist. Some
even labeled all Blacks as racists. It may appear,
forms of racism are blatant, for example, the
therefore, that we are moving toward two
cultural and legal restrictions of the South.
societies as a result of such racist attitudes-one
Other forms of racism are more subtle, such as
black, one white-separate and unequal.
standards of beauty, acceptable speech, the
In responding to the challenge of helping
promises of advertising, and the quality of
handicapped Black Americans develop to their
education all of which are white.
fullest potential, society needs to undertake four
Racism is expressed by many attitudes such as
basic activities. These activities are as follows:
hatred or intolerance for those who are racially
different. As noted in the report of the Presi-
1. Obtain accurate statistics on the incidence
dent's National Advisory Commission on Civil
of handicapping conditions among Black Ameri-
Disorders (1968) the 1967 riots were brought
cans. A comprehensive system must be designed
about by white racism, coupled with the lack of
for identifying Black Americans who are handi-
progress in providing Blacks equality in educa-
capped and in designing this system, two factors
tion, jobs, and housing. Yet whites, particularly
must be taken into consideration. First is the
those in our political, economic, educational,
definition of the handicapped and its applica-
and social services, have not come to the point
bility to Black Americans. Second is recognition
of accepting sacrifices to alleviate the plight of
of past abuse and exploitation of Black Ameri-
Blacks. On the other hand, there are clear and
cans as subjects for research which have yielded
ominous signs that the patience of Black men
little, if any, direct benefits for them.
with White unwillingness to take action is
running out. The violence in our cities in the
2. Examine the present social and rehabilita-
1960s and early 1970s, in part, represented
tion service delivery systems. A survey of public
anger of the Black American who had been
and private social and rehabilitation service
frustrated by the continuing chasm separating
agencies in the U.S. would reveal that the
the protestations of equality from the persistent
number of handicapped Black Americans served
reality of second-class citizenship.
by these agencies is negligible. In view of this,
Lincoln (1968), Carmichael and Hamilton
one cannot help from raising the question as to
(1967), Silberman (1964), Kozol (1967), Brink
why Black Americans are not being served by
and Harris (1966), and others have also pointed
these agencies. Are these agencies equipped to
out that America is a white racist society. This
serve the racially different clients and respond to
indictment is of the total white society and not
their unique needs? Is the service delivery
a segment of the society. As a result, Black
system presently being used for serving the
Americans, in recent years, have actively chal-
handicapped population at large viable for the
lenged the traditional white, middle-class-
handicapped Black American?
oriented public and private institutional systems
3. Develop a pool of manpower resources for
in an attempt to achieve equality of oppor-
social and rehabilitation services that can relate
tunity, social emancipation, and justice. In doing
to the handicapped Black American. It would be
so, many Black Americans have adopted the
absurd to assume that all professionals in social
belief of Malcolm X (1963) that racism is so
and rehabilitation services can deal effectively
deeply ingrained in white America that appeals
with handicapped individuals from ethnic minor-
to conscience would bring no fundamental
ity groups, but those who can need to be
change. Hence, the concept of Black Power
supported and provided educational oppor-
emerged, reflecting the Black American's drive
tunities for increasing their competence in this
for independence, racial pride, and self-respect.
area. Moreover, it may be necessary to develop
5
new manpower resources to serve the handi-
SOCIETAL ATTITUDES
capped Black American. Several social and re-
habilitation service programs have experimented
The problem which constitutes the most
with the idea of using support personnel-
crucial barrier to the successful adjustment of
individuals from the community and of the same
handicapped Black Americans is societal atti-
racial background of the clients being served-
tudes. Societal attitudes more than any other
and found them useful. Regardless of the com-
variable dictates the type of treatment provided
position of the manpower resources for serving
them and also influences the development and
the handicapped Black American, they must be
implementation of programs to meet the diverse
equipped with the knowledge and skills to deal
needs of handicapped Black Americans. A his-
with people who may have handicaps over and
torical synopsis of society's treatment of the
above the primary one. In the case of the Black
handicapped, in general, reflects that attitudes
American, professionals must not only be able
have fluctuated widely from negative ones of
to deal with handicapped Black Americans in
extermination, ridicule, and asylum to positive
relation to their physical, mental, emotional, or
one of education and rehabilitation, i.e., provid-
social handicapped, but also help these individ-
ing the handicapped an opportunity to develop
uals deal with the additional handicapping con-
to his fullest physical, mental, social, educa-
ditions caused by discrimination and prejudice
tional, vocational, and economic usefulness. This
because of their racial background.
transformation of negative to positive attitudes
4. Develop human relation programs and
on the part of our society, however, has not
make them mandatory for all professionals in
been completed and is still in transition. Many
social and rehabilitation services to sensitize
unfounded negative attitudes still exist in areas
them to the Black American and other ethnic
which provide the basis for prejudice toward the
minority groups. Many professinals do not
handicapped person. Gellman (1959) attirubtes
understand how and why handicapped Black
such prejudice toward the handicapped by the
Americans think, feel, and behave the way they
nonhandicapped in modern society to three
do. They do not understand the unique prob-
deep and often unconscious mechanisms: (a) a
lems faced by Blacks in dealing with the
belief that physical abnormality is a retribution
day-by-day prejudices perpetrated upon them.
for evil, and hence the disabled person is evil and
Of most importance, professionals in social and
dangerous; (b) a belief that a disabled person has
rehabilitation services lack experience in dealing
been unjustly punished and is therefore under
with handicapped Black Americans who have
compulsion to an evil act to balance the in-
different motivational patterns and values. As
justice, and hence that he is dangerous; and (c)
Rogers (1961) so eloquently stated about the
the projection of one's own unacceptable im-
goals of counseling, "To be facilitative toward
pulses upon the disabled, and hence that they
another human being requires that we be deeply
are evil and dangerous. These same factors which
sensitive to his moment-to-monent experience,
are applicable to both the nonhandicapped and
grouping both the core meaning, significance,
the handicapped Black American, are not "often
and the content of his experience and feelings."
unconscious" but "conscious" mechanisms.
Of course, there are many other activities one
Blacks have not been admitted to full mem-
must consider if society is to help the handi-
bership in our society, and Americans are now
capped Black American develop to his/her full-
faced with the question of whether they really
est potential. The four basic activities mentioned
believe in their expressed values of equality and
above represent the most crucial ones in need of
freedom. As noted by Wright (1959), in her
attention at this time. An obvious and common
basic principles and assumptions underlying re-
denominator for all four activities is "under-
habilitation, every human being is of worth, to
standing." Society needs to better understand
be respected and cherished, no mattter how
the unique problems faced by the handicapped
severe his handicaps may be. Handicapped Black
Black American. In response to this need, the
Americans have a right to be respected and
remainder of this paper is devoted to a discus-
cherished, no matter how severe his handicaps
sion of the major problems faced by the
may be. They have a right to be assisted in the
handicapped Black American in trying to trans-
unfolding of their personality and the develop-
late his/her potential into self-fulfilling social
ment of their potentialities, for their own sake
and economic roles.
and the good of society.
6
McGowan and Porter (1967) support this
constitute a challenge and make the probability
when they discuss the two basic assumptions
of success unpredictable. Why should the handi-
underlying the formation of special programs for
capped Black American follow-through on his
the handicapped: (a) Every member of a demo-
application for services when the professional
cratic society has an inherent right to the
who is suppose to provide assistance displays an
opportunity to earn a living and make his
indifferent (often negative) attitude toward
contributions to society, and (b) society has the
him/her and his/her requests?
obligation to equalize, as best it can by special
How often do professionals forget that mes-
services, the handicapped person's opportunity
sages can be transmitted through general atti-
to earn a living equal to the opportunity
tudes, voice tone, posture, and other paralingual
possessed by nonhandicapped members of so-
means by which we communicate reinforcement
ciety.
or denial? Whey should the handicapped Black
American trust a white, middle-class, profes-
ATTITUDES OF PROFESSIONALS
sional who may communicate sincerity and
understanding in the helping relationship, but
Another problem which affects the successful
after working hours supports and actively par-
adjustment of handicapped Black Americans is
ticipates in programs directed toward the op-
the attitudes of professionals who provide social
pression of Black people? They are aware of all
and rehabilitation services. As mentioned earlier
these morally offensive realities. Yet, some
in this paper there is a need for greater aware-
professionals in social and rehabilitation service
ness and understanding among these profes-
agencies turn their backs or bury themselves in
sionals of Black Americans. They need to
their professional endeavors and escape through
understand how white racism is manifested in
the defensive reaction of denial, repression, or
discrimination in education, housing, employ-
intellectualization. Some do virtually nothing to
ment, and other vital areas-the antithesis to the
help alleviate the serious problems that exist.
concept of equal opportunity for the Black in a
Attitudes are formulated out of knowledge
democratic society. Since many professionals in
and experiences and are significantly influenced
social and rehabilitation service agencies live in
by the environment in which the person lives.
protective and isolated environments and may
This explains why many whites have retained
support the continuation of such racist atti-
prejudiced attitudes toward the Black. They do
tudes, it is incontestable that such attitudes
not understand Blacks, their culture, style of
transfer themselves into their professional en-
life, values, and attitudes, and virtually have no
deavors.
accurate knowledge and experience in dealing
The vigorous drive for equality by Black
with them. The lack of experience, in particular,
people during the past few years has generated
inevitably creates and perpetuates fear, anxiety,
multitudinous repressed feelings of fear and
hostility, apathy, and indifferent attitudes.
hatred among the whites in our society. Unfor-
Moreover, it is extremely difficult for whites to
tunately, these prejudicial attitudes adversely
accept the fact that there are individual dif-
influence the attitudes and action taken by
ferences within the Black society. Rather, they
professionals in assisting the handicapped Black
tend to classify all Blacks into one large group
to develop to his/her fullest potential. A compli-
that fits their stereotypes and massages their ego
cating feature implicit in such negative attitudes
and feelings of superiority. The Black is viewed
among whites is the mythical belief that all
not as a human being, who may have suffered
Blacks are lazy, shiftless, fearless, lewd, ignorant,
the plight of discrimination, but as a morally evil
immoral, and vicious.
person who has created complex problems for
When professionals are questioned regarding
himself and society. With this value orientation
the provision of social and rehabilitation services
present in society, it may be difficult for
to the handicapped Black Americans, the typical
professionals to feel compassion for or empathy
defensive responses are: "Blacks won't apply for
with the handicapped Black American.
our services"; "they are not motivated"; "they
If professionals in social and rehabilitation
apply for services but fail to follow-through,"
agencies are going to increase their efforts in
and a host of other mythical notions. Frankly,
serving the handicapped Black, they are going to
what professionals are reflecting is that they do
have to examine and change some of their
not care to work with individuals who may
attitudes. It is impossible to objectively help the
7
handicapped Black develop to this fullest poten-
capped Black American. Communication repre-
tial if prejudiced attitudes are not recognized
sents the basic foundation for interaction be-
and dealt with by the rehabilitation worker
tween individuals and the development of viable
himself.
human relationships. It influences our attitudes
Many attitudes can be modified as a result of
and actions toward people. In particular, com-
increased awareness, knowledge, and exposure.
munication can influence attitude change in a
Professionals must actively seek information and
positive direction if the source is highly credible,
experiences for a better understanding of the
while sources having low credibility either do
handicapped Black American. Experience is an
not affect attitude change or swing it in a nega-
excellent modality for teaching people of the
tive direction.
problems of the handicapped Black. Many can
Walker (1968) in his article "The Disadvan-
learn from experience and can develop the
taged Enter Rehabilitation-Are Both Ready?"
mecessary attitudes and sensitivities essential to
found that one of the primary problems with
helping these potential clients proceed through
traditional techniques in serving the disadvan-
rehabilitation.
taged, particularly minority clients, was com-
In pursuit of information and experiences for
munication. He indicated that at their rehabilita-
a better understanding of Blacks, particularly
tion center they made the mistake of talking to
those who may be physically, mentally, emo-
the disadvantaged as if they were middle-class
tionally, or socially handicapped, professionals
neurotics. Walker stated that:
in social and rehabilitation service agencies also
Our interviews involved such classics
need to do the following:
as "improving one's relationship with
others" and "feeling of alienation."
1. Develop a sincere desire and commitment
This process seemed to be rewarding
to help Black clients.
to the staff, but our clients were never
2. Develop in their agency a library of books,
quite sure what we were talking about.
papers, and periodicals dealing with Black his-
They continued to insist that they
tory and culture.
only wanted a job. Worse yet, their
3. Learn and respect the language patterns of
relationships did not improve.
the Black client SO that they can communicate
adequately with him.
Walker further pointed out that their first
4. Help overcome the dehumanizing proce-
step in correcting the communication problem
dures of the present rehabilitation system.
was to reduce to a bare minimum vague terms
5. Have dialogues with a wide variety of
such as "motivation" and "personal adjust-
Black citizens.
ment." He insisted on the staff using operational
6. Develop and participate in sensitivity train-
terms which could be clearly understood by both
ing programs designed to deal with rehabilitation
parties. Slowly the staff began to use statements
workers' attitudes toward Black people.
such as "other people don't like you," instead of
7. Develop and participate in in-service train-
"your relationship with others appears to be a
ing programs designed to help them gain knowl-
problem."
edge and understanding of the Black. Include
The inability to penetrate the language bar-
visits to Black ghetto areas and make an effort
riers of the handicapped Black American renders
to secure, show, and evaluate films and video-
middle-class professionals in social and rehabili-
tapes with Blacks and their problems.
tation service agencies helpless. They usually
8. Start listening to what Black clients have
communicate in abstractions and words that not
to say about their needs, social and rehabilita-
only convey motivations, but that transmit,
tion services.
modify and refine feelings as well. In fact,
9. Become involved in community action
professionals hardly consider their services suc-
projects and other community activities in the
cessful unless their clients verbalize their feelings
ghetto.
fluently. Unfortunately, such fluency is rare
with handicapped Black Americans, most of
COMMUNICATION
whom communicate with great economy of
language. Their speech is characterized by a
Communication is another problem which
reduction in modifiers, adjectives, and adverbs,
affects the successful adjustment of the handi-
especially those which qualify feelings.
8
If a helping relationship is to be productive,
the services offered by social and rehabilitation
there must be maximum communication be-
agencies and manifest a high degree of skep-
tween the parties involved. Words, whether
ticism regarding them. Middle-class people have
spoken or written, are symbolic for various
had from infancy a continuing series of relation-
aspects of man's experience. They represent
ships with professionals and friends who assist
objects, actions, relationships, and constitute, in
them in some way. These contacts, in the main,
effect, a code. In order for verbal communica-
are verbalizing relationships. The roles of the
tion to occur between parties, there must be
assister and the assisted are clearly understood.
shared understandings, common ideas, concern-
With handicapped Black Americans, such roles
ing these words. When the counselor speaks, the
are not as clear cut and therefore, dissemination
words he says must have meaning for the
of information is more important to them.
listener. Likewise, when the handicapped person
It cannot be overemphasized the necessity of
speaks, the professional must know what the
dealing with how the handicapped Black Ameri-
words, as used by the speaker, stand for. Both
can feels about himself/herself and those obsta-
persons in short, need to know the code.
cleses that he or she must come in contact with
Because the middle-class professional and the
in life. It is not SO important how the profes-
handicapped Black American have such diver-
sional thinks he should feel, but how he/she
gent experiential backgrounds, communication
does feel. Handicapped Black Americans should
may be impeded by the lack of a pool of shared
have the freedom to express their true feelings.
understanding.
It should become the professional's objective to
Professionals in social and rehabilitation serv-
help them to work through their doubts by
ice agencies must learn the language patterns of
carefully understanding the forces acting on
clients so that true meanings are being com-
them and trying to see things through their eyes.
municated. However, at all cost, avoid mimick-
Professionals should not look for that auto-
ing the handicapped Black American's collo-
matic, middle-class respect that they have been
quialisms. They must recognize the difficulty
accustomed to. Respect is a two-way street and
he/she has relating to them. Thus, any attack or
must be earned by deeds and actions.
perceived attack on the handicapped Black
Many handicapped Black Americans hesitate
American will jeopardize the helping relation-
to reveal themselves psychologically which also
ship.
influences the helping relationship. Research
In helping the handicapped Black American,
suggest that in American society, self-disclosure
hardly any attention is directed toward non-
is directly related to how the individual has been
verbal communication. They can quickly pick
treated in society. Individuals who have been
up non-verbal cues that betray a professional
treated harshly and have experienced hardships
person's real feelings. A grimace, tone of voice
are reluctant to share their hurts with anyone,
or appearance may convey far more than words.
even their most intimate friends. Handicapped
Professionals, therefore, need to become adept
Black Americans are very careful in revealing
at understanding the non-verbal signals and signs
their real feelings regarding professionals and the
used by the handicapped Black American in
social and rehabilitation service system. They
expressing himself. In addition, professionals
may disguise their feelings of frustration, alie-
need to demonstrate non-verbally or through
nation, and hostility in a variety of ways.
action to the handicapped Black American the
Professionals need to recognize the differ-
desire and commitment to help them. The most
ences in values and conflicts within the handi-
vital characteristic that must be conveyed is true
capped Black American's culture without be-
sincerity.
coming judgmental. They should not try to
re-shape them, but accept and clarify their
values and help them improve within the scheme
ATTITUDES OF HANDICAPPED
of these values. At the same time, we need to be
BLACK AMERICANS
sympathetic toward, respect and even enhance
the handicapped Black American's values to
Another problem that affects the successful
reach him/her. Although Black Americans need
adjustment of handicapped Black Americans is
to exercise their own values and develop their
their attitudes toward themselves. Handicapped
own thinking in context with their life style
Black Americans basically lack familiarity with
and culture, professionals need to provide them
9
with the new information about themselves,
REFERENCES
their environment and their possible future.
Barker, R. & Wright, B.A. The social psychology
of adjustment to physical disability. In: James
F. Garrett, (Ed.) Psychological Aspects of
Physical Disability, Washington: Vocational
SUMMARY
Rehabilitation Administration, 1953.
Brink, W. & Harris L. Black and white. New
York: Simon and Schuster, 1966.
This paper has dealt with some of the major
Carmichael, S. & Hamilton, C. V. Black power.
concerns and factors influencing the successful
New York; Vintage 1967.
adjustment of handicapped Black Americans. It
Gellman, W. Roots of prejudice against the
did not include a detailed analysis of all the
handicapped. Journal of Rehabilitation, 1959,
problems experienced by these individuals in
25, 4-6, 25.
relation to their education, environment, com-
Kozol, J. Death at any early age. Boston:
munity, and employment possibilities. Rather,
Houghton Mifflin, 1967.
the paper focused on selected problems-society
Lincoln, C. E. Is anybody listening to black
attitudes, attitudes of professionals, communica-
America? New York: Seabury, 1968.
tion, and handicapped Black American attitudes
Malcolm X & Haley, A. The autobiography of
which represent the key factors in understanding
Malcolm X. New York: Dell, 1963.
handicapped Black Americans and their unique
McGowan, J. G. & Porter, T. L. An introduction
problems.
to the vocational rehabilitation process. Wash-
The successful adjustment of the handicapped
ington: Rehabilitation Services Adminis-
Black American can help alleviate the nation's
tration, 1967.
domestic and racial problems. Current develop-
National Advisory Commission on Civil Dis-
ments in society suggest that the decision-
orders. Report of the national advisory com-
making time is here if we seriously want to solve
mission civil disorders.
our human problems. Yet, the most potent force
Rogers, Carl R. On Becoming a Person. Boston:
affecting such an endeavor is attitudes. The
Houghton Mifflin, 1961.
future requires new kinds of attitudes, partic-
Silberman, C. E. Crisis in black and white. New
ularly among rehabilitation workers, if they
York: Vintage, 1964.
intend to meet their commitments in rehabilita-
Washington, K. S. What counselors must know
ting handicapped persons, regardless of race,
about black power. Personnel and Guidance
creed, or national origin.
Journal, 1968, 47, 204-208
SECTION II
UNIQUE PROBLEMS OF HANDICAPPED NATIVE AMERICANS
INTRODUCTION
villages. Another 500,000 persons live in urban
areas at the present time and, for purposes of
Any position paper which purports to address
the paper, have generally lost their Indian
itself to conditions affecting the "Native Ameri-
"identity" by virtue of their place of residence.
can" population must begin with a definition of
An undertermined number of other persons of
what constitutes a "Native American," how the
Indian descent, who reside on State reservations
definition is arrived at, and the limitations of
and are, therefore, not Federal beneficiaries, are
such a definition.
also not included in this report.
For purposes of this paper, Native Americans
are considered to be those persons of Indian,
DISCUSSION OF THE PROBLEM
Eskimo, or Aleut descent who are eligible for
services provided by the Indian Health Service;
Two major problems drastically limit the
this definition limits the population to some
scope of the paper. The first is that compre-
500,000 persons residing in 26 States on Fed-
hensive data on all handicapping conditions
erally recognized reservations or in Alaskan
simply do not exist since the Indian Health
10
Service does not now keep statistics on the
than are the corresponding English terms "deaf
number of persons with conditions consdered
and dumb." In common with other tribal
handicapping. Many Indian children who are
characteristics reflected in language the Ute term
handicapped are cared for by State Crippled
implies no value judgment of the condition.
Children Services but States may vary greatly in
While there seems to be little question that the
determining what conditions they consider to be
person with a severe handicap is recognized as
handicapping. Mental retardation and severe
being different in the Indian communities, by and
behavioral disorders are not included in State
large such differencè is accepted within a wide
Crippled Children's programs; learning dis-
range of tolerance. By contrast, prosthetic de-
abilities are usually excluded from State pro-
vices do not seem to have the same acceptance
grams and even deafness is not considered
in some Indian communities. While perhaps a
handicapping in some States when it comes to
reflection of childhood generally, anecdotal ac-
determining whether or not the State can
counts of Indian children ridiculed for wearing
provide a hearing aid for a deaf child. Degree of
either eyeglasses or a hearing aid are rather
impairment and disability need to be considered
abundant. Ridicule does not seem to be associ-
in determining an individual's inclusion on a list
ated with the condition requiring the prosthetic
of the handicapped, but none of the information
device, however.
which follows gives such a breakdown. These
In writing of given groups of persons, rec-
estimates are laregly based upon previously
ognition of an attitudes toward handicapping
presented testimony to Congress, State Crippled
conditions the risk towards over generalization
Children registries, Head Start enrollment data,
nees to be avoided. There seems to be a
numbers of institutionalized children, and hos-
tendency in much of the literature to generalize
pital admissions.
the "Indians" as if they were a very homogene-
A second limiting factor in determining the
ous group of people, particularly with respect to
extent of handicapping conditions is the tend-
attitudes, mores, religious beliefs, and attitudes.
ency among many Indian communities to absorb
In fact, variations of attitudes and beliefs are as
the handicapped, or other "different," person
common among Indian communities as any
within the structure of the society. Many Indian
other segments of society. Sapir (1951), as
communities are characterized by very extended
mentioned below, was an early observer of a
family relationships so that the handicapped
particular segment of Indian societies' attitudes
person can be cared for within the family or
towards disfiguring or handicapping conditions.
within the community at large. Estimates of the
More recently, Bergman (1968) has noted in
number of deaf Navajos, for instance, have been
Navajo boarding schools the activities of Navajo
extremely hard to come by since many Navajo
children which would not seem to fit the
persons are known to be deaf who spend their
generalized position stated above:
lifetimes herding sheep a vocation which they
Group hostility is often directed at scape-
are capable of pursuing and which has a great
goats. In a situation where large groups of
deal of value within the Navajo community.
children are constantly together with rigid
While there are Navajo children enrolled in
but not very close adult supervision, op-
various State schools for the deaf, the means for
portunities for teasing are particularly great. I
determining what proportion of those actually
regularly see depressed, masochistic children
needing special education cannot be arrived at.
who have a special proclivity for being baited,
As might be inferred from the foregoing, the
and the baiting is often extreme. Children with
accpetance of "deviance" is higher among many
physical deformities are also often badly treated
Indian groups than the contemporary American
by their classmates, and there is little the out
society as a whole. In some groups, for example,
numbered dormitory staff can do about it.
the child born with a handicap is not evaluated
Children with seizures are in an even worse
negatively since it is assumed the child has the
position. Seizures are cause for alarm and disgust
prenatal choice of how he wishes to be born
among traditional Navajos. They are thought to
and, if handicapped, is so by choice. Some
be caused by incest or haunting by the dead, and
Indian languages also show a great deal of
are sometimes taken as a sign that the affected
sophistication in recognition of the problem.
person is a witch. Children with seizures are
The Ute term n'kvat ("can't hear so can't talk")
usually stigmatized and ostracized, but they can
is much more highly descriptive of the condition
and often do strike back. Many of them learn
11
that the attacks frighten the other children SO
social, self, and emotional alienation. Bergman
much that they can be used as a weapon. They
(1968) points out one of the major reasons for
then develop a large stock of pseudoseizures
such disruption as it affects Navajo children
with which they can sometimes dominate the
when he notes that the Navajo child coming into
life of their dormitory. I once attended a
an English speaking environment is analagous to
conference about one girl, who besides her grand
anyone of us suddenly being enrolled in an
mal seizures, which were well documented clini-
astronomy class at Moscow University and being
cally, had other attacks which the school called
expected to learn classes taught in Russian.
"her running seizures." When aggravated, she
Bergman elaborates on the problem as it affects
would begin to yell and run madly about the
education achievement:
room. When she did, the other sixty girls in the
dormitory would all run out the doors. I asked
In the world of the boarding school
the dormitory attendants what they did, and
not only the Navajo language but
one answered, "We hide in the closet."
almost all things Navajo are rated very
In summary, the following are particularly
low. The children are frequently told
significant problems in determining the extent
not to be like their parents and are
of handicapping conditions affecting American
often admonished against following
Indians and Alaskan Natives:
the traditions of their people. One
middle-aged woman told me that she
1. lack of information sources reporting on
went to school in the days when few
handicapping conditions;
Indian children were enrolled and she
2. lack of definition of the extent of what
went more or less against the wishes
constitutes "a handicap" in the cross-
of her parents. She had been eager to
cultural sense. From the foregoing, it
go to school and did well in her first
seems apparent that "handicap" is a highly
two years, but then left suddenly. I
variable term meaning different things to
don't believe that the school knew the
persons within different cultures. This is
reason for her leaving but she told it
particularly a problem in providing services
to me. Her teacher one day was angry
to Indian beneficiaries if, as in the instance
at the laziness of the class and said,
cited above, a child "wanted to be born"
"If you want to live in a hogan for the
with a cleft palate. People in this group
rest of your life just don't bother to
would appear to be less likely to consider
study." Since this women definitely
such a child "handicapped" although the
did want to live in a hogan for the rest
prevailing non-Indian community sur-
of her life, she left school. There, are
rounding this reservation would certainly
other bizarre consequences of this
view the child this way when he entered
system. In my consultations with
public school. As also mentioned above,
school personnel I often encounter
the Navajo child wearing a hearing aid may
instructional aides who pretend not to
be more likely the considered "deviant"
speak Navajo. They have become SO
by virtue of the prosthesis than on the
convinced that speaking Navajo is a
basis of the handicapping condition.
bad thing to do, that they often won't
admit that they can. The children
learn that what they say in Navajo is
BEHAVIORAL-EMOTIONAL DISORDERS
effectively kept secret from the au-
thorities even if one of the Navajo-
Bryde (1967) reported that for the Oglala
speaking members of the staff hears
Sioux in South Dakota a 60% school drop-out
them, because the Navajo staff mem-
rate between grades 8 and 12 was an indication
ber will be too ashamed of having
of poor mental health. In his research he
understood to tell anyone.
compared Oglala Sioux students with non-Indian
students and found significantly greater person-
The effects of such an environment on the
ality disruptions on the part of the Indian
child obviously interfere with more than his
students on such variables as rejection, depres-
educational achievement. Bergman further de-
sion, anxiety, withdrawal tendencies along with
scribes the resultant hostility which evolves and
12
at the same time provides some insights into
School becomes a continuously defensive ordeal
how certain handicapping conditions are viewed
to be survived." (P.499)
from the traditional Navajo point of view.
6. Perpetuation of gaps in basic skills:
From Alaska, Nachmann (1969), describes
"Through the wide spread practice of 'social
what she calls "the main types of non-physical
promotion'
children who have failed to ac-
interferences in learning the intellectual develop-
quire the basic language and arithmetic skills
ment which hamper the Native student":
upon which all subsequent learning is dependent
or pushed along through the grades according to
1. Lack of early stimulus to learning: "The
age rather than achievement. As a consequence
pre-school years for the largest and most crucial
what is taught become increasingly unmeaning-
intellectual development takes place are years of
ful, and the entire educational process increasing
extreme stimulus deprivation for many Native
an empty compliance with a ritual require-
children. The climate precludes outdoor play for
ment." (P.499)
a large portion of- the year. The out of doors in
7. Lack of supervisory aid for teachers: "The
the Artic provides a highly simplified sensory
lack of intensive local supervision and the
environment. The average home is a meagerly
disadvantages of 'absentee administration' to a
furnished one or two room structure, largely
problem which stems from Alaskas' immense
devoid of toys, books, pictures, musical instru-
distances and which education hence shares with
ments, indeed most of the sensory input which
many other occupations. Teachers are fre-
stimulates the urban childs' development."
quently new to Alaska, new to the ways of life
(P.498)
in the remote north, and new to teaching at
2. Interference in character development:
once. They are cut off from the means to
"Prolonged or repeated separation from parents
professional stimulation and development which
(due to hospitalizations of parents or children,
are available elsewhere." (P.500)
removal of children to boarding schools, and
other kinds of family disruptions) remain a
Nachmann recommends that handicapping
common occurrence for Alaskan families."
emotional and mental conditions resulting from
(P.499)
these problems could be changed within the
3. Interference in development of capacity to
educational system through recognition of the
sublimate: "The use of the intellect, if it is to
undereducation of the Native as a universal
preceed at all beyond simple note learning,
problem, through elimination of social promo-
depends upon their having occurred in child-
tion, through recognition of preschool and adult
hood the development of this capacity to
education are essential to the success of the
transform the basic instinctual energies into
regular school program, the bilingual Indian and
intellectual ones
it is difficult to provide the
Eskimo teachers and aids be trained and used,
necessary conditions for this development in a
and that higher trained supervision and in-service
crowded one room house where the sexual
training be provided on the local level.
activity and the destructive violence that life
Also specifically to Alaska, Fleshman (1969.
entails must be viewed at close range by every
P. 529-531) notes that the Alaskan Native child
member of the household." (P.533)
suffers an excessive amount of illness to the
4. Separation of education from other
extent that roughly 15% of such children are
meaningful experiences: "There exist for many
hospitalized each year. He observes that there
children not only the temporal discontinuities in
are two major effects on the children, the first is
personal relationships mentioned above, but also
direct and related to disease and the second is
a sharp discontinuity between schooling and
indirect and related to nonspecific factors such
other meaningful experiences." (P.533)
as separation from parents and prolonged hos-
5. Teacher-student attitudes which inhibit
pitalization. In the latter case, particularly,
learning: "Because of its linguistic and cultural
significant emotional problems can result when
strangeness participation in the classroom rou-
we see that many Native children have become
tine is experienced by many children here as
ill in the village, must be taken to the field
exposure to criticism and to the danger of being
hospital and then are often transferred up to 600
found wanting-the aim becomes to conceal
miles to a referral hospital where they may
ignorance and to avoid embarrasement by saying
spend several months and then return home. He
as little as possible and keeping uninvolved.
states that a number of such children who as
13
infants were separated from their parents were,
from chronic ear disease was the number one
at about 10 to 12 years of age, having difficulty
disability capable of interfering with education
in relating to their families, were failing in
and learning in Alaska and that many surveys
school, and were also failing to grow in normal
indicated that 10% of the population had
physical fashion even though separation may
chronic ear infection with 1/4 of these having
have resulted from a parent who was ill rather
the involvement to the extent that hearing
than the child.
acuity was impaired. At that time in Alaska at
Other socio-cultural factors relating to handi-
least 625 school children had a serious handi-
capping conditions in Alaska include mental
cap with many more, up to 1/3 of the
retardation, which is difficult to determine since
population, suffering acute infections during
no one has yet devised a reliable test that
infancy and early childhood. Also in 1969,
excludes sociologic factors. Such factors com-
Deuschle (pg. 537-553), reviewed the available
bined with infectious diseases such as meningitis
literature regarding ear disease and hearing loss
lead Fleshman to conclude that probably every
affecting Indians and Alaska Natives. He re-
Alaskan village will contain at least two school
ported that hearing survey conducted by the
age children who are mentally retarded. He
State Audiologist found that in Bethel 53% of
concludes (P. 530-531): "The diseases that we
the males and 39% of the females in the first
are dealing with are essentially unmanageable by
through eleventh grade had a hearing loss of 26
traditional medical means. They disappeared as
decibels or more and noted that handicaps of
killers and cripplers many years ago in the rest
this magnitude would have far reaching conse-
of the United States, yielding to correction of
quence throughout the entire lifetime of the
the environmental factors responsible such as
affected person. He also noticed the difference
housing, sanitation, nutrition, and education. I
in prevalence in citing a table presented by
feel that it is imperative that the education
Johnson (R.L. Johnson, "Chronic otitis media in
system consider the tremendous gap that exists
school age Navajo Indians," Laryngoscope, Vol.
between the Alaskan Native pupils and the
LXXXVII, No. 11, Pages 1990-95, 1967) which
average child in the United States and to realize
showed that hearing loss in one or two ears in
that poorly nourished, physically handicapped
the general population equal 1.2% while for
or chronically ill children cannot learn nor
Indian children in British Columbia it was 31%,
achieve in a competitive society. The curriculum
for Aleut children it was 26%, for Alaskan
must contain a much stronger emphasis than it
Indian children it was 23% and for Eskimos' it
now does on learning about sanitation, nutrition,
was 34%. In the same study, Johnson reported a
basic, and, especially, reproductive physiology
prevalance of chronic otitis media at 7% with one
until the time these children are able to accept
out of four having a bilateral involvement. (More
and utilize the contents of the traditional United
recent information gathered from Navajo, un-
Stated curriculum."
published, indicates clinic otitis media rate aver-
aging 10% with some boarding schools as high as
COMMUNICATION DISORDERS:
13%). A smiliarly high prevalence was found by
OTITIS MEDIA
Zonis ("Chronic otitis media in southwestern
American Indians. I. Prevalance. Archives of
For reasons other than the author's profes-
Otology Volume 88, Pages 40-45, 1968). More
sional bias, the one plea from which data on
recent reports to Indian Health Service indicate
handicapping conditions exists to some extent is
an overall prevalence of chronic otitis media
the field of communication disorders, particu-
equalling 5% throughout the Indian Health
larly for hearing loss associated with otitis
Service population; this figure would indicate a
media. Since 1961, when it was first listed as a
reservoir of 22,000 unoperated patients in a
reportable disease, otitis media has ranked no
non-Alaska population (Stewart, 1975).
lower than second in frequency of report annu-
ally. In 1962 the reported disease rate was
ADDENDUM
3,801/100,000 and 1974 was 10,958/100,000.
The increased prevalence is probably a result of
Probably the most pressing general need
both better case finding procedures and in-
insofar as handicapping conditions among Indian
creased disease rates. In 1969, Fleshman (P.530)
persons is concerned is the same problem that
reported that hearing loss primarily resulting
faces delivery of health services generally. The
14
average Indian income is still in the neighbor-
American Indian groups can only be surmised.
hood of $2,000 a year, unemployment averages
One way of determining whether or not such
40% overall and the 500,000 Federally recog-
conditions existed is to determine from the
nized Indians (representing over 260 tribes and
native language whether or not words in that
215 Alaskan Native villages) are spread very
language exist for a particular problem. Again
thinly over 26 States whose Indian populations
very few linguists have written on this matter
vary from over 435 in Louisiana to 180,000 in
nor, to the writer's knowledge, has anyone
Oklahoma. Partly due to these conditions, many
interested in handicapping conditions investi-
diseases of potentially handicapping effect are
gated the linguistics literature to determine the
extremely prevalent in the Indian populations;
existence of such conditions. One notable ex-
tuberculosis, for example, is 6.5 times higher
ception to this was the work done by Sapir
than the rate for all of the citizens of the
(1915) whose study of "abnormal speech
Uniited States. The increased prevalence of ear
Nootka" developed the interesting thesis that
disease has already been mentioned. Not in-
certain consonants in the Nootka language had
cluded in the present report, however, had been
linguistic meaning and designated certain physical
such other factors as the extremely high rate of
classes of persons such as unusually fat people,
persons crippled in automobile and other acci-
unusually short adults, those suffering from
dents, effects of other debilitating diseases that
visual defects, hunchbacks, etc. Particularly pre-
are not seen elsewhere in the United States (such
valent were a wide variety of speech defects
as trachoma), and the whole gamut of condi-
expressed through such "consonatal play.'
tions arising from poor nutrition, etc.
Other than these references, however, no other
With respect too the concerns of this Confer-
reference to handicapping conditons historically
ence, the primary need for assessment of handi-
were located by this writer.
capping conditions, persons affected by these
conditions, services available, and services
STATE OF THE ART
needed must first start with developing cross
cultural definitions of what constitutes a handi-
As can be inferred from the foregoing, the
cap, how persons with handicapping conditions
"art" of determining the extent and severity of
can be located in view of some of the problems
handicapping conditions among the American
mentioned above, determning which of these
Indian and Alaskan Native peoples is by all
conditions might eventually be preventable and
accounts extremely primitive at the present
an assessment of rehabilitation program needs of
time. Existing health records are not designed to
those whom the condition already exists.
extract information regarding handicapping con-
During the first four years of a comprehensive
ditions per se nor is there a strong liklihood that
otitis media control program initiated by the
such categories would be included in the near
Indian Health Service in 1970 a total of 125,000
future. Other sources of information such as
persons were screened of which 32,000 failed
State registers for handicapped children, voca-
one or more screening tests. From this number,
tional rehabilitation programs, and other sources
16,500 were found to have a loss of hearing in
from State and Federal agencies, are increasingly
one or both ears. During the same time period,
difficult to come by for a number of reasons
8,000 persons received surgical procedures. As-
such as the fact that no racial identification of
suming an 80% audiometric success rate, this
the handicapped person is recorded, the Privacy
would leave a reservoir of 10,500 persons
Act, etc. Many Indian groups today are still very
(mostly children) to have been found to have a
highly mobile and individual persons may seek
hearing loss which would be considered at least
out services from any number of different
mildly handicapping. The overall estimate of
facilities within a large geographic area so that
persons potentially benefiting from the use of a
even if a handicapping condition were to be
hearing aid in Indian Health Service is 12,5000
noted there is a liklihood that it would be
at the present time.
recorded several times. This is further compli-
cated by the tendancy among some Indian
HISTORICAL PERSPECTIVE
groups for persons to change their names with
some regularity SO that even reliable census
The extent of handicapping conditions in
figures are not obtainable at the present time in
previous times and their prevalence among
many of the locales served by Indian Health
15
Service. "State of the art" at this time is a rather
K.L. Fleshman, M.D., prepared statement in
vague concept in the context of the needs of this
Hearing Before the Subcommittee on Indian
White House Conference.
Education of the Committee on Labor and
Public Welfare U.S. Senate Part 1, 1969, Pages
537-553.
BIBLIOGRAPHY
K.L. Fleshman, M.D., prepared statement in
Hearings Before the Subcommittee on Indian
R. L. Bergman, M.D. "Boarding Schools and
Education of the Committee on Labor and
Psychological Problems of Indian Children,"
Public Welfare U.S. Senate Part 1, 1969, Pages
reprinted in Hearing Before the Special Sub-
529-5311.
committee on Indian Education of the Com-
Nachmann, Ph.D., prepared statement in Hear-
mittee on Labor and Public Welfare U.S.
ings Before the Subcommittee on Indian Edu-
Senate Part 3, 1968, Pages 1121-1127.
cation of the Committee on Labor and Public
J.F. Bryde, S.J., Ph.D., prepared statement in
Welfare U.S. Senate Part 1, 1969, Pages
Hearings Before the Special Subcommittee on
498-533.
Indian Education of the Committee on Labor
E. Sapir, "Abnormal Types of speech in Noot-
and Public Welfare U.S. Senate Part 1, 1967.
ka," reprinted in Selected Writings of Ed-
Wm. Carlile, M.D., personal communication,
wards Sapir in Language, Culture, and Person-
March, 1976.
ality, (Ed.) David G. Mandebaum, University
K.W. Deuschle, M.D., prepared statement in
of California Press, Brooklyn Los Angeles,
Hearings Before the Subcommittee on Indian
1951: Pages 179-196.
Education of the Committee on Labor and
J. L. Stewart, "Provision of Health Care of
Public Welfare U.S. Senate Part 1, 1969, Pages
Underserved Populations," Volta Review, Jan-
537-553.
uary 1975, Pages 64-71.
SECTION IV
UNIQUE PROBLEMS OF
HANDICAPPED INDIVIDUALS WITH
SPANISH SURNAMES
INTRODUCTION
alternative strategies or approaches that merit
examination/implementation/evaluation.
This paper intends to deal with the concerns
It is still recognized that the number of
of the Spanish speaking Americans and particu-
Spanish speaking persons in the United States
lary with those within that community who
comprises a substantial population, enough to
experience handicaps. An effort will be made to
form the fourth largest Spanish speaking coun-
present material that will be helpful in under-
try in the Americans after Mexico, Argentina,
standing this group of people, and to examine
and Columbia. While historically they have been
issues relative to the service delivery systems
identified with the southwest, they are also
intended to meet their needs. There will be an
found in significant numbers throughout the
attempt to describe the Spanish speaking popu-
U.S. They represent 17 percent of the popula-
lation, including: an assessment of their num-
tion of California, 30 percent of New Mexico,
bers, their mode of entry, their relative position
20 percent of Colorado and great numbers in
in this society, and the causes of their dispropor-
other states such as Washington, Michigan, Illi-
tionate socio/economic problems. An effort will
nois, Kansas, and Iowa. The Los Angeles area
also be made to illustrate the unique cultural
has approximately 1.5 million persons of Span-
differences that have an impact upon the thera-
ish speaking descent, making it one of the largest
peutic or rehabilitation efforts made in their
Spanish speaking cities in the world (Burns,
behalf. Finally to be considered are those issues
1972). There are approximately 3.5 million
involving the effectiveness or ineffectiveness of
persons of Puerto Rican descent, and one
the socio / medical / educational / rehabilitation
million of these reside in New York, and there
systems that have been established to serve the
are great populatons in New Jersey, Massa-
needs of the handicapped. This will include
chusetts, Pennsylvania, and Florida, as well as
16
many states throughout the nation. Persons
ism'. Nevertheless, despite any mode of entry
from virtually every Spanish speaking country
the conditions of external control and power-
can be found- in the United States. These include
lessness, disenfranchisement and racism con-
the Cubans in Dade County, Florida and persons
tinue.
from other Carribbean, Central, and South
The Spanish speaking people have very little
American countries.
to say about, or opportunity to share in the
All Spanish speaking people have concerns as
responsibility for the decisions in those matters
an ethnic group in the United States, and these
that effect them. They are seldom found in
express themselves symptomatically in per-
policy making, administration or professional
sonal/socio/economic areas. Unfortunately, a
positions. The agencies providing those services
large number (25 percent) are below the poverty
are often homogeneous in the composition of
level, 15 percent are unemployed and the
their personnel to the extent that input for the
dropout rate from school ranges from 50 to 80
culturally different is non-existent.
percent with educational under-achievement be-
Consequently, it may be expected that those
ing a universal concern (Padilla and Ruiz, 1973).
agencies are neither sensitive nor responsive to
As with other poor people, there is a high level
their concerns and are lacking in a reflection of
of health problems and these are compounded
their culture. Without this a revitalization of
by problems of malnutrition, industrial ac-
that culture is not possible; which impossibility
cidents, congenital defects, etc. Therefore, a
further perpetuates the people's oppression.
higher incidence of handicapping conditions can
Under these circumstances a situation exists
be expected. These problems are then again
where the people endeavor to accomodate them-
compounded by a lack of resources to intervene
selves to their environment in vain. The service
in these conditions. There is also the problem of
agencies do not try to respond to their clientele.
a lack of responsiveness by social/medical/man-
In summary then, it can be concluded that the
power/educational/rehabilitation delivery sys-
problems of people in certain groups, such as the
tems.
minorities of the Spanish speaking people in the
U.S., are a result of external or environmental
HISTORICAL PERSPECTIVE
conditions, and not the result of the innate
deficiencies of their culture.
The Spanish-speaking has played a significant
Therefore, the issue is this: a delivery system
role in this country beginning with Columbus in
with integrity must address itself to the unique
1492 when he was involved in the "discovery"
cultural differences of the handicapped among
of America. Very little information is available
the Spanish speaking people, or it will force
to indicate the extent of handicapping condi-
them to surrender their integrity. It is not
tions of this particular group of people. They
realistic to seek changes without a willingness to
have, however been continuously entering since
make positive changes to accomodate the vital
that time.
needs of others. However, resistance to change is
Immigration to the U.S. from Mexico was at
inherent in organizations; since in time they
its peak at the turn of the century during the
have become closed, professional, self serving
Mexican Revolution as people sought refuge
and self perpetuating. This, then, is a serious
here. World War I created a ready labor market
challenge; these changes may only occur if given
for them and thus number of Spanish speaking
the attention of concerned movements; such as
people increased dramatically. Since then the
The White House Conference on the Handi-
stream has continued, not only from Mexico but
capped. While the dynamics illustrated herein
from virtually every Spanish speaking country.
are those of the Spanish speaking, they may be
Puerto Ricans are U.S. citizens, and they have
equally applicable for all groups of the handi-
also come to the mainland in great numbers.
capped.
These newcomers have been added to the
existing pool of stagnation, and this condition of
CULTURAL CHARACTERISTICS OF
colonization seems to continue to apply to the
THE SPANISH SPEAKING
entire Spanish speaking population, whether
they have been Americans for three or three
There are unique cultural characteristics ex-
hundred years. This condition within the
tant among the Spanish speaking that must be
country is often referred to as 'Internal Colonial-
considered when working with their disabled.
17
First, the family is considered as the most
enculturation. Inherent is the understanding that
important social unit, and individual interests or
there are significant differences in the ways
aspirations are subordinate to those of the
cultural groups define problems, participate in
family. Each member has a unique and responsi-
planning interventions, and utilize systems avail-
ble role with the father being the head and
able to deal with problems that may arise. The
responsible for providing for his family as well
individual must be viewed from a vantage point
for their behavior in and out of the home. He
that incorporates the client's values, family
has a great degree of freedom, and needs to
structure and community matrix and not merely
practice his machismo which is done in a strict
the medical aspects of the disability. The chal-
but gentle manner. The mother devotes herself
lenge then for those working with the Spanish
to her husband. and children with her personal
disabled is to give consideration to the distinc-
interests secondary to those. She has the greatest
tive socio-cultural attributes within the client's
:
influence in the family. but exercises it in subtle
community matrix.
ways. The children are treasured and indulged
Physical and mental disabilities are a part of
with great amounts of personal and physical
life, yet their psychological consequences are
affection. They are not without responsibility
monumental. The individual experiences a sense
however, and this may take precedence over
of powerlessness and loneliness, avoidance and
school or personal attainment. When a disabling
denial, hostility and anger. The physical trauma
condition interrupts this system, it may create a
of loss generates a series of phenomena-denial
serious crisis; e.g., if the father cannot continue
and isolation, anger and hostility, depression and
in his role of provider he may be personally
resolution-which demands a process of adjust-
devastated particularly if the mother must go to
ment by the individual. Though change is a
work. His machismo may not allow him to do
characteristic of life, in the dominant society's
'womanly' chores and thus role changes are
view, change involves mastery and control over
difficult. He might turn to alcohol and children
the environment in a manner that subsumes
may not sustain the traditional levels of respect
achievement.
under such conditions. Thus the traditional
The adaptive style of the individual is directly
cultural strengths may not be operable. On the
related to the degree to which the individual
other hand, inasmuch as a cultural characteristic
ascribes to a particular set of cultural character-
of the Spanish speaking is what is described as a
istics. The systematic body of learned character-
cooperative society, it can be utilized as an
istics, which are transmitted from parent to
intervening variable to compensate for the losses
child, can be regarded as being on a continuum;
due to disability and thus maintain the strengths
that is a flow binding one generation to another.
of the family unit.
Thus, members from a Spanish speaking cultural
The Spanish speaking traditionally have prac-
experience and percepition have a greater likli-
ticed folk medicine and may only seek clinical
hood of ascribing to these behavioral character-
services on a crisis basis. thus unresponsive
istics than their Anglo counterparts (Murillo,
therapeutic efforts might be considered with
1971). The behaviors noted along the con-
suspicion and home remedies used to the extent
tinuum range from a more traditional to an
that access to proven rehabilitation measures
assimilative perspective. Often in clinical sett-
might be delayed. This argues for understanding
ings, evaluations are based in terms of the
and responsive programs.
Spanish speaking individual's degree of adjust-
ment to the majority culture. It is well to note
that the same behaviors have different meanings
CULTURAL SHOCK AND
for different cultural groups.
SOCIAL SERVICES
Deviance from the expected norm does not
necessarily denote pathology, but rather reflects
Ethnic minorities share in the right to have
a dynamic process in which members are con-
their values and ways of life respected and
tinually adjusting their patterns of living and
incorporated into institutional and social service
ways of coping. The primary goal of the
programs-rehabilitation services being only one
counselor thus is to assist the handicapped or
of the multifaceted services available in our
disabled individual in achieving a lifestyle which
communities. No man develops by himself,
is satisfying and congruent with his self-percep-
rather he is a product of the socialization and
tion.
18
Cultural perspectives do influence the adap-
enfranchised from the decision-making processes
tive process; in this case, defined as the dynamic
that govern their lives. They have suffered from
process of reciprocal interaction between man
a lack of responsiveness to their unique cultural
and his environment, to achieve a sense of
characteristics, which has been symptomatic of
equilibrium. The Spanish speaking individual,
the service organizations created to serve the
who is psychologically prone to accept support
handicapped individuals of our society. It has
and cooperation, finds himself in conflict when
been established that the environment in which
placed in a treatment plan that emphasizes
they exist, which can justly be described as
self-reliance and individualism. Generally solu-
colonialism, has been the major cause generally
tions and roles for the individual in accordance
of their disadvantaged socio-economic position.
with his abilities and capabilities. The individual's
This is the vicious cycle of poverty. If we are
The Spanish speaking community provides an
to enable these people to share in the services
avenue for acceptance by altering the expecta-
provided for them, alternative strategies must be
tions and roles for the individual in accord with
examined. The consideration and possible ac-
his abilities and capabilities. The individual's
ceptance of these new directions is more than a
status, acceptance, and prestige is still based on
challenge; it is, and must be, a legitimate public
the handicapped/disabled individual's ability to
issue.
assume those altered roles and responsibilities
Therefore, sheer economics support the need
which contribute toward the common good of
for responsive service and make is feasible to
the household. Though his accommodation re-
create separate programs for each ethnic group.
tains the individual's dignity, status and prestige,
It would seem that, where there is a critical need
it may deter from that individual's utilization of
to justify it, community based programs should
services. The potential fear of being lost, or
be preferred, and that under such conditions a
disregarded by social/medical/rehabilitation serv-
separatist strategy would be a rational choice. Its
ice agencies, overrides the necessity of those
strength is that it places responsibility and
services.
accountability closer to the client and, there-
In contrast, the individual's acceptance in the
fore, closer to the problems. Further, it permits
dominant society is related to or measured by
self-determination and decreases the dependence
the individual's ability to succeed and climb the
upon external administration, which has often
ladder of success. Emphasis is given to individ-
been insensitive or paternalistic.
ualistic, aggressive, and competitive roles in both
A serious effort is required to eliminate the
seeking assistance from social service agencies
artificial barriers that have kept them out. The
and in cooperating with the treatment of re-
selection criteria for positions in those agencies
habilitative plan. Institutions often define the
serving the handicapped must reflect and accept
client's ability to relate successfully with the
the cultural characteristics of all applicants. This
particular agency in terms of "motivation."
strategy may be described as one of cultural
In addition to the complementary role con-
pluralism. Its consideration is a major issue; it
flict, the Spanish speaking individual finds that
has neither been accepted nor practiced before.
the clinical agencies are often unable to meet the
It is also a strategy which will be welcomed by
client at the level of his psychological readiness
the Spanish speaking community.
for interdependence, because the term denotes a
negative rather than a positive connotation.
Interdependence can be viewed as a tool for
RECOMMENDATIONS
growth from which the individual emerges with
the skills and tools to achieve a lifestyle that is
The following are suggested recommendation
satisfying and congruent with his self percep-
for consideration by the White House Con-
tion.
ference on Handicapped Individuals:
One major point this paper has continually
attempted to make clear is this: the Spanish
1. To insist on the inclusion of the Spanish
speaking people have been barred from an active
speaking community in all programs for the
role in the administration of the helping services
handicapped by the establishment of mech-
designed to alleviate their disadvantaged socio-
anisms that ensure meaningful input from them,
economic position. Because little input has been
and participation by them in those programs
allowed from this group, they have been dis-
that affect them.
19
2. To insist on enforcable affirmative action
Gonzales, Rodolfo. I Am Joaquin. New York:
programs that institutionalize the involvement
Bantam Books, Inc., 1972.
of the Spanish speaking people at all levels of
Hays, Dorothea, "Teaching a Concept of Anx-
the organizational hierarchy of those programs
iety," 1961.
and agencies that serve the handicapped.
Lee, Jane M. "Emotional Reactions to Traume,"
3. To provide for research and demonstration
Nursing Clinics of North America. Vol. 5, No.
projects that explore effective means by which
4, December, 1970.
to serve the handicapped Spanish speaking in a
Murillo, Nathan. The Mexican American Family.
manner utilizing the strengths of their culture.
In: Wagner, Nathaniel N., and Haug, Marsha
4. To promote cultural awareness training
J., eds. Chicanos: Social and Psychological
that promotes understanding acceptance and
Perspectives. Saint Louis: C.V. Mosby Com-
respect for all persons regardless of race or sex.
pany, 1971.
Padilla, Amado M. and Ruiz, Rene A. Latino
Mental Health A Review of Literature. Wash-
ington, D.C.: U.S. Government Printing Of-
BIBLIOGRAPHY
fice, 1973.
Paz, Octavio. The Labyrinth of Solitude. trans-
Adler, Peter. "The Transitional Experience: An
lated by Lysander Kemp. New York: Grove
Alternative Niew of Culture Schock," Journal
Press, Inc., 1961.
of Humanistic Psychology, Vol. 15, No. 4,
Roberts, Sharon. Behavioral Concepts and the
Fall, 1975.
Critically Ill Patient. New Jersey: Prentice
Arma, Jose, Editor. De Colores Journal of
Hall, Inc., 1976.
Emergine Raza Philosophies, Vol 2, No. 2,
Sapir, Edward. Culture, Language and Person-
1975.
ality. Berkeley: University of California Press,
Blauner, Robert. "Internal Colonialism and
1964.
Ghetto Revolt," Social Problems, 1968.
Sarbin, Theodore. "Culture, Social Identity and
Burns, E. Gradford. Latin America, A Concise
Cognitive Outcomes," Psychological Factors
Interpretive History. New Jersey: Prentice
in Poverty, ed. Vernon L. Allen. Chicano:
Hall, 1972.
Markham Publishing Co.
20
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
FULL EDUCATIONAL OPPORTUNITIES
FOR HANDICAPPED INDIVIDUALS
Awareness Paper Prepared by
The Council for Exceptional Children
Reston, Virginia
Pub. WHC -- 17
TABLE OF CONTENTS
Page
Introduction
1
The Legal Right to Education
3
Financing of Education for the Handicapped
4
Delivery Systems
6
Early Childhood Education
8
Educational Problems of the Severely Handicapped
12
Career Education
15
Continuing Education
18
Personnel Requirements for Education of the Handicapped
20
Research and Education for the Handicapped
22
Public Information and Education
24
Summary
26
References
27
Additional Readings
30
Appendix A: The Education for All Handicapped Children Act,
Public Law 94-142
30
Appendix B: Methods of State Fiscal Support
36
INTRODUCTION
relevant education can provide the foundation
for a successful, rewarding life.
Education is the right of all. This principle is
Although handicapped children represent ap-
based on the philosophical premise of democ-
proximately 10% to 12% of the school age
racy, that every person is valuable in his or her
population, although the number of handi-
own right and that each individual should be
capped children receiving special education serv-
given equal opportunity to develop full poten-
ices has grown, only about 40% of these children
tial. Too often this premise has not been applied
are receiving an education designed to enable
to all persons. Throughout the history of Ameri-
them to achieve to their maximum capacity.
can- education, individuals with special learning
Additionally, there are an estimated 1 million
needs have faced the policy of closed door
handicapped children who are totally denied
exclusion rather than inclusion.
access to a free public education. Further, there
Who are the children schools have tended to
are an estimated 125,000 mentally retarded,
neglect or exclude? Who are the youth or adults
emotionally disturbed, and physcially handi-
who have sought relevant training only to face
capped children who live in state institutions
indifference and apathy? They are the individ-
where education programs are inferior or non-
uals who have been called "handicapped" and
existent (Weintraub, Abeson, & Braddock,
who because of physical, mental, emotional, or
1975).
learning problems require specialized education
On November 29, 1975, President Ford
services. In the United States there are an
signed the "Education for All Handicapped
estimated 7 million school age (plus 1 million of
Children Act," which is now Public Law 94-142.
preschool age) deaf, blind, mentally retarded,
(See appendix A for a detailed discussion of the
speech impaired, motor impaired, emotionally
law.) This landmark legislation represents a
disturbed, multiply handicapped, learning dis-
major breakthrough in insuring the appropriate
abled, or other health impaired children. There
education for all, particularly those children and
are many times that number of handicapped
youth who were unserved or underserved. Public
adults.
Law 94-142 is a federal/state partnership with
Handicapped children and handicapped adults
the federal government firmly committed to
require different kinds of education programs
financial support. Education programs, however,
and services. Although this paper identifies
remain the responsibility of the state govern-
various special education needs, the emphasis is
ments and local school systems.
on those for the early years and the school age
Public Law 94-142 makes a number of critical
child. It is during this time that an appropriate,
stipulations which must be adhered to by both
states and local school systems. These require-
ments including:
This current awareness paper was prepared by The
Council for Exceptional Children (CEC), Reston, Vir-
ginia, for the White House Conference on Handicapped
Assurance of extensive child identification
Individuals. However, it should be noted that this
procedures.
paper has not been adopted as an official position
Assurance of "full service" goal and de-
document of The Council. Contributors to this paper
tailed timetable.
were: K. Eileen Allen, University of Kansas; Gloria
A guarantee of complete due process proce-
Calovini, Illinois State Department of Education; William
dure.
C. Geer, CEC, Norris G. Haring, University of Washing-
Assurance of regular parent or guardian
ton; Jean R. Hebeler, University of Maryland; Philip
consultation.
R. Jones, Wisconsin State Department of Education;
Maintenance of programs and procedures
June B. Jordan, CEC; Hugh S. McKenzie, University
for comprehensive personnel development
of Vermont; Herbert J. Prehm, University of Oregon;
including inservice training.
Maynard C. Reynolds, University of Minnesota; Herbert
Assurance of special education being pro-
Rusalem, Teachers College, Columbia University; M.
vided to all handicapped children in the
Angele Thomas, CEC; H. Rutherford Turnbull, III,
"least restrictive" environment.
University of North Carolina; and Frederick J. Wein-
Assurance of nondiscriminatory testing and
traub, CEC.
evaluation.
1
A guarantee of policies and procedures to
5. Educational Problems of the Severely
protect the confidentiality of data and
Handicapped-The right to education mandate
information.
opens the doors for children and youth previ-
Assurance of the maintenance of an indi-
ously denied this opportunity. Education must
vidualized program for all handicapped
evolve responses to its complicated problems
children.
and many challenges.
Assurance of an effective policy guaran-
6. Career Education-Unemployment and
teeing the right of all handicapped children
underemployment of the handicapped place
to a free, appropriate public education, at
serious responsibilities on public education.
no cost to parents or guardian.
Career education's goal is to help a handicapped
Assurance of a surrogate to act for any
individual earn a living, but also to help that
child when parents or guardians are either
person live a life. Career education programs
unknown or unabailable, or when said child
must be continually developed which are aimed
is a legal ward of the state.
at accomplishing this goal.
7. Continuing Education-A process of life-
Throughout this paper reference is made to
long instruction is needed to equip individuals of
Public Law 94-142 and the potential impact this
all ages and in all disability groups to succeed in
legislation could have in bringing about "full
our society, to achieve self fulfillment, and to
educational opportunities for the handicapped."
live at the maximum level possible.
This paper addresses the current areas of activ-
8. Personnel Requirements for the Education
ity, concern, and developments essential to
of the Handicapped-Special education services
implementing a program to insure this goal.
have always been maldistributed but never so
Specific topics to be addressed include:
obviously as now, with the court mandates that
all children be served. Current forces and trends
1. The Legal Right to Education-Federal
are fostering role changes for special education
law mandates that shcool age children have the
personnel and increasing participation in inter-
right to a free, public and equal educational op-
disciplinary team approaches. New training ap-
portunity. The challenge of implementation and
proaches are needed.
monitoring of that law is now before the
9. Research and Education for the Handi-
consumers and professionals.
capped-Research in this area has only been
2. Financing of Education of the Handi-
vigorous for less than a decade. Currently, there
capped-Now when general school enrollments
exists little dissemination of research, few co-
are decreasing and the public would like to keep
ordinated research plans designed to meet the
costs from rising, special education is beginning
educational needs of all the handicapped, and
to serve a new group of publics whose programs
only the beginnings of national plans to sys-
are most costly. The need exists to study the
tematically implement proven methods or tech-
cost of different types of special education and
nologies of education.
their economic benefits.
10. Public Information and Education-Nega-
3. Delivery Systems-The term "mainstream-
tive attitudes can be traced to lack of informa-
ing" with its varied meanings should well be
tion, misunderstanding, or apprehension of how
replaced with the concept of "least restrictive
to deal with handicapped people. Information
environment." Delivery systems based on this
must be presented in a sequential meaningful
concept offer placement on a continuum of
fashion and disseminated in a systematic way.
services ranging from the least restrictive to the
most restrictive environment. Individualization
Throughout the paper, as each of the above
of educational plans is the key to educational
topics is addressed, the reader will note the
placement.
recurring themes of the importance and role of
4. Early Childhood Education-There is
parent and family involvement and the implica-
strong evidence that early stimulation and edu-
tions of the right to education mandate. Barriers
cational programing prevent handicapping con-
or problems impeding implementation are iden-
ditions of high risk infants as well as markedly
tified. Creative and positive solutions must be
reduce the number of children who will need
found and action taken to insure all persons of
intensive or long term help.
their educational rights now and in the future.
2
THE LEGAL RIGHT TO EDUCATION
placement in the least restrictive program, ap-
propriate education, and procedural due process.
Establishing the Right
It is also often accompanied by appropriations ear-
marked for special education. For example, Public
Only recently has it been established that
Law 93-380 (the Education Amendments of 1974)
handicapped school age children have the same
and Public Law 94-142 (the Education for
rights as nonhandicapped students to a free,
Handicapped Children Act of 1975) committed
public, equal educational opportunity. The prin-
federal funds to the education of handicapped
cipal source of this right has been a large number
children and contained requirements of zero
of state and federal courts orders, which have
reject, least restrictive alternative placement, and
been based on two premises: first, handicapped
procedural due process. By the same token,
persons can learn and profit from training and
many states have recently enacted laws provid-
education; and second, techniques and technolo-
ing the same rights for handicapped students.
gies exist which are believed to be appropriate for
Typically, federal and state guidelines, adopted
training and education the handicapped.
by executive agencies, spell out in further detail
These premises have been transformed into
how appropriations may be used and how the
legal doctrines by court decisions, which have
principles may be implemented.
stated that excluding handicapped children and
None of the recent developments would have
youth from school violates their rights to educa-
occurred without the vigorous and imaginative
tion under state constitutions, the equal protec-
action of consumers and professionals com-
tion clause of the 14th Amendment, or the due
mitted to the education of handicapped people.
process clauses of the 5th and 14th Amend-
They identified the sources of power and acted
ments. Accordingly, courts have variously or-
decisively to influence them. They brought
dered that:
lawsuits. They lobbied their state and federal
legislative representatives. They entered into
1. No handicapped child may be excluded
powerful alliances with state and federal agen-
cies whose mission is the education of handi-
from education because of his handicap (the
"zero reject" principle).
capped students. In short, they used each of the
2. Schools have a duty to provide an equal
three available governmental processes and ave-
nues of change.
educational opportunity to all handicapped stu-
dents (the "mandatory education" principle).
3. The preferred educational placement of
handicapped students is in the least restrictive
environment program (the "mainstream" belief).
Implementation and Monitoring
4. The handicapped child is entitled to educa-
tion or training that is appropriate to his needs
Consumers and professionals acted together
and conditions and is designed to help him
to establish the right to education for all
achieve his fullest potential (the "appropriate
persons. Now the issues before those so con-
education" principle).
cerned are the implementation of the right to
5. The child, his parents, and his guardian or
education mandates and the monitoring of the
actions of the schools.
a person acting as his parent (a "surrogate") are
entitled to a hearing on any proposed special
The handicapped person's right to education
education placement before the placement is
is not yet fully implemented. The lack of
manpower and financial resources and the reluc-
made (the "procedural due process" require-
ment).
tance of public schools officials to comply
enthusiastically with the legal requirements pose
serious obstacles to making the right meaningful.
Although litigation is the principal enforcer of
Implementation is made even more crucial
this right, it is not the only source. Federal and
because of the complexity of the problem--
state legislation also provides that handicapped
integrating all handicapped students into a sys-
persons have a right to education. This legisla-
tem of free public education and providing them
tion often requires schools to comply with the
with appropriate training. It is already clear that
principles of zero reject, mandatory education,
further legislation, executive rule making, and
3
litigation will be required before the right to
FINANCING OF EDUCATION FOR
education takes on substance for all handi-
THE HANDICAPPED
capped children. Legislation, rule making, and
litigation may all have to be used to create
"Money does not educate children; teachers
special programs, train competent educators,
and other educational workers do. Spending
reallocate school dollars, provide early interven-
money on education will not in itself guarantee
tion programs, furnish compensatory training to
that children will be educated, but it is certain
adults, conduct child find activities of school age
that children cannot be educated without it." So
handicapped children, or prevent the use of
said David Selden (1971), the then President of
discriminatory tests that lead to inapprorpriate
the American Federation of Teachers, in his
school placements.
testimony before a U.S. Senate Select Com-
Monitoring the schools-making sure that
mittee investigating equal educational oppor-
they do as they are required to do-is an almost
tunity for every citizen of the United States.
overwhelming task, one that surely will require
resorting to the three avenues of change: third
Existing State Legislation
party monitoring, outcome oriented studies, and
It is the states' responsiblity to provide each
the cooperation of parents and other advocacy
individual with an appropriate and equitable
groups (for example, centers on law for the
education, and states are allowed freedom and
handicapped) and school officials (for example,
autonomy in making their individual rules and
professional associations of special educators).
regulations. In the 1960's most states had
The resources of these groups, particularly their
legislation merely permitting local programs for
financial resources, are limited, which suggests
the handicapped. The typical state legislation
that the monitoring process is likely to be more.
made provisions only for children classified
difficult than establishing the right to education
under traditional categories. By 1972, 41 states
or implementing it. However, all efforts should
had changed their legislation into one of the
be made by the consumers and professionals to
following forms of mandatory law (Trudeau,
settle cases through the administrative levels
1972);
before lembarking on the route of the litigation
process.
1. Mandate by petition-which means educa-
tion is offered only when a substantial number
of parents and advocates petition the school
board.
Promises of a Revolution
2. Selective mandate-which discriminates
among the exceptionalities, for example, man-
Finally, the right to education mandate prom-
dating the provision of services to the emotion-
ises to work a revolution both in public and
ally disturbed but not to the learning disabled.
private education in two major respects. First,
3. Conditional mandate-which stipulates
the procedural due process requirement, coupled
that education for certain categories of children
with the statutory requirement of Public Law
would be compulsory if certain conditions were
94-142 that each handicapped student have an
met, for example, a requirement of at least 15
"individualized" education plan prepared and
children of a certain category living within one
carried out for him, will have schools function-
school district.
ing as child-centered institutions and will make
4. Planning mandate-which requires that a
them accountable for their work. Second, imple-
state develop plans, possibly including a future
menting and monitoring the right to education
deadline for serving its exceptional children.
will affect the schools themselves. The resulting
5. Full mandate-which forbids the exclusion
administration, organization, financing, and
of any child regardless of the educational need
furnishing of special education will have a
("zero reject").
profound effect on the training and roles of all
educators and on the education of nonhandi-
By 1975, the number of states with manda-
capped persons as well, particularly in those
tory laws had grown to 48, with an increase in
situations in which the handicapped and non-
the number of states having the full mandate
handicapped individuals interact.
(Bolick, 1975).
4
Despite this additional mandatory legislation
restrictive environment. Experience has shown
and the wide array of legal action pointing
that regular class placement with supporting
toward the urgency of educating exceptional
services is not automatically less costly than
children, the U.S. Office of Education estimates
educating children in self contained classrooms.
that only about 40% of the handicapped are
Administrators must hire consulting teachers,
currently receiving the assistance they need to
methods and materials specialists, itinerant
have full equality of opportunity (Jones &
teachers, and resource teachers and must pay for
Wilerson, 1974). An analysis of state financing
inservice training of regular classroom teachers.
of services for the handicapped (Thomas,
Other examples of additional costs are the
1973b) has shown that the most frequently
installation of special audiological equipment in
served individuals have often been those whose
any classroom a hearing impaired student needs
educational costs were lower than other handi-
to attend or the installation of ramps or eleva-
capped groups. Further, strong legislation has
tors in schools accommodating orthopedically
generally only been carried out in the wealthier
handicapped students.
states. Thus it would appear that legal mandate
alone is insufficient to guarantee programs for
Methods of State Fiscal Support
handicapped persons.
The question now is not whether, but how,
The Fiscal Implications of Federal
special educational services should be financed.
Right to Education Legislation
There are six general categories of state fiscal
support. These are intended to at least partially
The right to education for all persons now
offset the additional costs incurred in educating
requires school systems to provide for additional
some handicapped students. While the amount
exceptional students at a time when the general
and distribution of the reimbursement varies
school enrollment is declining. Although the
from state to state, the following definitions
number of these "new" pupils to be served is
supply the basic principles upon which the
low, the education of this particular population
formulae are built (Thomas, 1973a; see Ap-
of handicapped students will be more costly
pendix B for further elaboration of these defini-
than that of handicapped students already being
tions):
served (Bernstein, Kirst, Hartman, & Marshall,
1976).
1. In the unit financing approach, school
The previously unserved and underserved,
districts are reimbursed a fixed sum by the state
who must now be provided an education,
for each designated unit of classroom instruc-
include the severly, profoundly, and multiply
tion, transportation, administration, or ancillary
handicapped. The complexities of their handi-
service.
caps require the employment of specialists, such
2. Through the weighted formula system, for
as communication specialists, physical and oc-
each handicapped person a school district en-
cupational therapists, dieticians, and nutri-
rolls, it is reimbursed the cost of educating a
tionists. In addition to providing education,
nonhandicapped individual, multiplied by a pre-
school agencies must also deliver related services
determined factor. This factor may vary accord-
such as prosthetic devices, adaptive transporta-
ing to the type or degree of disability of the
tion, equipment, and special teaching materials.
handicapped student.
Developing individualized plans and determining
3. With the percentage reimbursement sys-
solutions for the unique problems of each
tem, a percentage of all costs (sometimes the
individual will require multidisciplinary staff
entire costs) incurred by school districts in
planning which will create additional costs. Also,
educating handicapped individuals is assumed by
school districts must now develop infact, pre-
the state.
school, and early intervention programs, and
4. In a reimbursement by personnel ap-
also programs aimed for persons needing educa-
proach, the state pays for any special staff costs
tion through at least the ages of 21 (and in some
that are incurred by a school district offering
states an even higher age.)
programs for handicapped persons.
One of the stipulations of Public Law 94-142
5. In the straight sum reimbursement system,
is that the student be educated in the least
a set amount of money is distributed from the
5
state to the school district for each handicapped
comprehensive special education program within
child placed in an approved program.
the public schools should include elements of a
6. School districts using an excess cost for-
noneducational nature, such as infant screening
mula determine the per pupil cost of educating a
and identification; parent counseling; and liaison
handicapped child and then subtract from this
with medical and mental health services, univer-
amount the cost of educating a nonhandicapped
sity clinics, residential institutions, and other
child in the same district. The difference or
private and community agencies (McLure, Burn-
excess is then reimbursed by the state.
ham, & Henderson, 1975). The costs of these
services have not traditionally been part of
None of the above support systems is immune
school budgets.
from inherent deficiencies. Under the unit
financing system, rural or small school districts
Public Attitudes and Accountability
often do not quality for unit size. The weighted
formula system is limited in two respects: first,
The public attitude, despite the wishes of
if the per pupil cost used is a state average, those
many of those directly concerned, is that costs
districts with high educational costs will not
shall not rise. There is the question of whether
receive equitable reimbursement; and second,
the handicapped, particularly the severely handi-
the system assumes that all individuals in a given
capped, should receive high expenditures of
disability group will require the same amount of
monies because they may not have the potential
funding. In percentage reimbursement school
to benefit from such expenditures. Such
districts are tempted to place children in the
thoughts do indeed exist and are sometimes
least expensive program. Reimbursement by
expressed publicly even though the meaning
personnel fosters special class placement rather
may be disguished behind other language (Sherr,
than regular class placement with additional
1975).
appropriate resource services. Further, it encour-
However, reflecting the increased scope of
ages large class sizes to decrease per pupil
available services, state and local outlays for
expenditure. The straight sum system accentu-
special education in most states have expanded
ates labeling. And lastly, in the excess cost
two to three times over the 1972 levels (Wilken
formula, it is difficult to ascertain exactly what
& Callahan, 1975). Public decision makers,
constitutes excess cost.
because of the public attitude towards costs
(though not necessarily the education of handi-
Special Factors Adding to Costs
capped persons), are growing increasingly uneasy
with spiraling costs of special education (Yates,
While concerns of programming, cost, fund-
1975). Therefore, it is reasonable to expect that
ing, and management cut across all special
these decision makers will require greater ac-
education services, certain geographic locations
countability on how funds are delivered and
or particular populations have unique problems
expended, how well the program objectives are
due to an unusually high proportion of individ-
met, and how beneficial the results seem.
uals having special needs. For example, the
military assigns personnel with dependent handi-
capped children to installations in areas where
DELIVERY SYSTEMS MAINSTREAMING
educational programs for the handicapped are
available (the "compassionate transfer pro-
Delivery Systems for All Children
gram"). Consequently, the entrollment in these
programs exceeds the expected enrollment (ac-
The mandate to provide the education of all
cording to prevalance estimates) and adds
children regardless of handicapping conditions is
greater financial burdens to the school districts
here, and every school system must accept each
involved (Jones & Wilderson, 1974).
child as its legitimate educational concern. State-
A child's handicapping condition is rarely
ments of exclusions must be eliminated. "A
confined to academic concerns: it also affects
different climate is reached when it is assumed
the child's parents, his relationship with peers,
that all children are capable of being educated
and the coordination of efforts on his behalf
than when it is assumed that just some children
among nonschool agencies. For this reason, a
have this capability" (Bertness, 1976).
6
A school system which, almost 18 years ago,
which his educational and related
successfully adopted the position of including
needs can be satisfactorily provided.
children with handicaps as opposed to excluding
This concept recognizes that excep-
them, offers some statements on the issue:
tional children have a wide range of
special educational needs, varying
Education of exceptional students should
greatly in intensity and duration; that
be an integral part of the total program of
there is a recognized continuum of
public education.
educational settings, which may, at a
Programs should emphasize similarities of
given time, be appropriate for an
exceptional children to other children.
individual child's needs; that to be
A concern for the education of exceptional
maximum extent appropriate, excep-
children seems to demand a concern for all
tional children should be educated
children.
with non-exceptional children; and
An exceptional student's education plan
that special classes, separate schooling,
draws increasingly on the general public
or other removal of an exceptional
education resources as he becomes master
child from education with non-excep-
of his exceptionality.
tional children should occur only
Provisions for handicapped students must
when the intensity of the child's
be made in all remodeling and new con-
special education and related needs is
struction.
such that they cannot be satisfied in
The philosophy and elements of the pro-
an environment including nonexcep-
gram should be stressed in personnel re-
tional children, even with the provi-
cruitment, since not all educators have the
sion of supplementary aids and serv-
same convictions.
ices.
The advantages of the program will need to
be explained and sold continuously as
community and staff memberships change.
Least Restrictive Environment
"When we work seriously with all children,
Delivery systems employing the least restric-
we accept them with the characteristics they
tive environment concept must focus on a full
possess rather than some characteristics we
continuum of services. Educational environ-
might hope exist. A school, therefore, becomes a
ments are viewed along a continuum of physical
complex, dynamic place, loaded with many
and social restrictiveness from placement in a
varied programs responding to the great variety
regular classroom with nonhandicapped peers to
of multiple and changing pupil characteristics. It
placement in a more restrictive setting such as a
is not enough to say we belive in education for
special class (on a full or part time basis), a
all children, we must demonstrate the belief
special school, a group home, or a residential
through actions" (Bertness, 1976).
institution.
Exceptional persons have a wide range of
special educational and related needs that vary
greatly in intensity and duration. Given this
Mainstream-A Belief
diverse range of needs, both specialized and
In formal session, April, 1976, the Delegate
generic delivery systems are necessary. However,
Assembly of The Council for Exceptional Chil-
to the maximum extent appropriate, handi-
dren officially adopted the following definition
capped students should be educated with non-
on maintstreaming:
handicapped students. Placement in special
classes, separate schooling, or other removal
Mainstreaming is a belief which in-
from education with nonhandicapped students
volves an educational placement pro-
should occur only when the intensity of the
cedure and process for exceptional
student's educational and related needs is such
children, based on the conviction that
that they cannot be satisfactorily provided in
each such child should be educated in
regular programs, even with the use of supple-
the least restrictive environment in
mentary aids and services.
7
Special Services That Support the
1. Parents are, in some cases, the most
Delivery System
appropriate trainers/educators.
2. Parents are the consumer; either directly
To support any instructional delivery system
or indirectly they pay for the program and
there must be an array of special service. These
service their child is receiving.
include all types of services necessary for com-
3. If knowledgeable about the program,
prehensive education of a pupil. As teachers
parents can be-the best advocates for it.
individualize instruction for pupils, and as
4. Parents of a handicapped child will have
schools provide more instructional services for
more responsibility for their child over a signifi-
individual pupils, there must be an effective
cantly longer period of time than parents of a
system for delivery of special information and
nonhandicapped child. They need parenting and
materials to teachers and pupils. Other special
teaching skills in addition to those needed by
services include special transportation, special
parents of nonhandicapped students.
seats, electronic communications equipment,
5. Parents know their child better than any-
counseling and guidance, and a variety of con-
one else and can serve as a vital resource to
sultative services (Partridge, 1976).
program staff.
Parent Involvement
EARLY CHILDHOOD EDUCATION
The recent state and federal court actions
No one is sure of the exact number of
insuring the basic rights of parents will affect the
handicapped children and youth in the United
delivery service to their children. It has now
been established that:
States today. This is particularly true of children
under 6 years of age, but the usual estimate for
Parents should be informed about educa-
this group is about 1 million. No matter what
tional provisions for handicapped students
the number, there is ample evidence that the
available to them.
number could be reduced through proper educa-
Parents have the right to appeal a decision
tion.
that would alter their child's educational
Major longitudinal studies now offer evidence
program.
that high risk infants can achieve adequate school
Parents have the right to review and use in
success when favorable social climate and posi-
their appeal all information used by the
tve parenting techniques are used (Werner et al.,
school to make the decision.
1971). Equally supportive of the need for early
Parents have the right to have a neutral
stimulation is the evidence that, when infants
party decide on the most appropriate pro-
who suffer perinatal stress are not offered early
gram for their child.
training, all of these children are classified as
Parents have the right to have the benefits
handicapped by the age of 10 (Werner et al.,
of a special program specified and evalu-
1971).
ated.
Factors Contributing to the Number
An essential element of any delivery system is
of Handicapped
parental involvement. Parents may be more
appropriate trainers of very young persons than
The United States ranks 14th in infant mor-
educators outside the home. In addition, parent
tality, behind 13 other industrialized nations
training programs may be less expensive than
(DeWeerd, 1976). The mortality rate is higher
educational centers. The participation of parents
among proverty groups, which suffer from poor
in educational staffings helps insure that legal
housing, inaequate medical services, and malnu-
rights of the child or youth are protected: Such
trition. There are also a high number of handi-
participation also offers the opportunity to
capped children who reside in low income
establish a positive relationship betwen the
families. According to the Census Bureau, 14.2%
program and the home.
of all children, or one out of seven, was living in
There are numerous other reasons to involve
poverty in 1973 (Bureau of the Census, 1976).
parents in their child's educational input
A family's level of income affects the environ-
(Shearer & Shearer, 1976):
mental conditions of a child's life. The quality
8
of these inputs, such as the food consumed,
Recent court rulings and new legislation,
affect a child's growth and development. Depri-
however, are helping to move forward the goal
vations imposed through undernourishment
of full services. Public Law 94-142 requires states
(often a result of poverty) produce deficits in
to provide education to all handicapped children
the brain cells as well as structural and func--
between the ages of 3 and 21 by 1980 (with the
tional distortions in growth (Dobbings, 1975).
reservation that states not offering programs to
nonhandicapped individuals between the ages of
Another indication of the problem is a study
3 to 5 and 18 to 21 are permitted, though not
conducted in 1970 and 1971 by doctors in
required, to provide educational services to
Washington, D.C. (DeWeerd, 1976). On a repre-
handicapped individuals in those age groups).
sentative sample of 1.436 families with children
Another good example of recent develop-
between 6 months and 11 years, it was found
ments is the Handicapped Children's Early
that 26% of the children between 1 month and 3
Education Program, generally known as the
years had iron deficiency anemia, 26% had
"First Chance" program. Administered by the
uncorrected or inadequately corrected visual
Bureau of Education for the Handicapped, the
disorders, and 18% suffered from partial hearing
program grew from 24 initial projects with $1
loss with nearly another 13% having ear infec-
million appropriation in 1969-70 to a projected
tions that could lead to hearing loss. These
$22 million for about 200 projects in 1975-76.
children came from all socio-economic levels and
The purpose of the First Chance program is to
were receiving health care. The doctors making
develop demonstration projects. These serve as
the study felt the situation was probably no
models for public schools and other agencies
different in other cities. Add to this picture the
who need information on how to provide a
increased prevalence of single parent families,
variety of kinds of special help for handicapped
child abuse, and economic distress, and it puts
children and their families.
the child, and particularly a handicapped child,
In a review of the First Chance Projects,
in a most vulnerable position.
Karnes and Zehrbach (1976) identified four
There is ample evidence, however, that pro-
major delivery systems used in the programs for
grams that provide for early stimulation and
young handicapped children: the home-based
educational programing to meet the critical
system; the home followed by center; the home
needs of young handicapped children and their
and center-based system; and the center-based
families are. reducing the number of children
system. Home-based systems are those programs
who will need intensive or long term help
that are delivered entirely in the home. The
(Karnes, 1973: Haring, 1976). Some of the
parents are generally viewed as the primary
major factors remediating handicapping condi-
change agents, but in a few programs profes-
tions are the techniques the caretaker uses to
sionals or paraprofessionsals provide tutoring or
work with the infant. The most effective pro-
direct teaching. Many home-based programs,
grams with infants include specific training of
which begin with children under 3 years old,
the child's caretaker. The importance of reach-
continue as center-based programs after the
ing handicapped children early and working to
children are over 3 years of age. Other programs
help them reach their full potential cannot be
combine both the center and home approaches.
overstressed. Without early help these children
The children usually attend a program delivered
are, in many cases, lost. With help, they can
primarily in a center, and the parents are
prosper and often reach a potential one could
trained at home to deliver the program. These
not have dreamed years ago (DeWeerd, 1976).
programs are characterized by frequent staff
visits to the homes and cooperative planning to
coordinate center and home activities. In strictly
Federal Impetus to Finding and Serving
center-based programs, the emphasis is on teach-
the Young Handicapped Child
ing parents at the center. Carryover to the home
is encouraged, but in many instances only
Currently, only about 40% of school aged
infrequent visits are made to homes by the staff.
handicapped children receive appropriate spe-
These center-based programs tend to be for the
cialized educational services. The estimate for
older preschool child and/or the more severely
preschool children is only about 25%.
handicapped child who can benefit from special
9
equipment and highly trained personnel. Many
B. Child find activities: In October 1974, the
of these systems involve the use of categorical
National Assocation of Director of Special Edu-
grouping but there is an increasing emphasis on
cation conducted a national survey to identify
the inclusion of handicapped children in pro-
those child find systems currently operating in
grams with nonhandicapped children.
the states. Of the 26 state programs identified,
13 reported that their target populations for
child find included the preschool age child
Major Problems in Early Childhood Education
(Child Find, 1975, p. 60). Current federal
legislation stipulates that state departments of
Now that the federal government has en-
education must develop plans to assure extensive
couraged early education of the handicapped
child identification procedures.
through legislation and funding, several critical
C. Family involvement: The first hand in-
issues need to be considered. Each handicapped
volvement of parents in the teaching of their
child in the state aged 3 to 5 who is counted as
handicapped child is important if the child is to
served will generate a special $300 entitlement.
learn to function in his everyday environment.
This should tend to alleviate some of the
To be maximally effective, parent and infant
additional costs that preschool programs for the
training should start shortly after birth. In one
handicapped incur. For example, in an analysis
of the model First Chance programs, the parent
of programs in Bloomington, Illinois, the
and infant come in together starting 3 to 5
amount of extra cost per handicapped preschool
weeks after the birth of the handicapped child.
pupil was $3,005, or 4.22 times the cost per
During each weekly session, the infant's progress
elementary regular pupil (McLure, Burnham, &
is reviewed in terms of motor, cognitive, and
Henderson, 1975, p. 14).
social development; remedial exercises and train-
A. Timing of services: Mandatory assessment
ing procedures are demonstrated; and the
and identification of handicapping or potentially
parents are taught to continue the program at
handicapping conditions should begin at birth or
home for the ensuing seven days (Dmitriev,
shortly thereafter. As a followup, "mandatory
1974).
infant learning programs, based on demonstra-
Other examples of family involvement devel-
tion center programs, should be available to
oped and practiced in the First Chance programs
begin developmental intervention for the child"
include participation of the parent as an admin-
(Sontag, 1975). "The earlier, the better" seems
istrator, disseminator, staff member, primary
to be a safe maxim, especially for multiply
teacher, recruiter of children, curriculum devel-
handicapped children since the need for early
oper, counselor, assessor of skills, and evaluator
stimulation is so great.
and record keeper (Shearer & Shearer, 1976).
By providing appropriate learning experiences
It must be remembered that being the parents
starting in early infancy and by continuing these
of a handicapped child is a responsibility that
experiences throughout the preschool years, it is
taxes family members physically, emotionally,
possible to take advantage of critical or optimal
and financially. A parent of an autistic child
learning periods (Horowitz & Paden, 1973).
suggested that parents of handicapped chidren
These may be thought of as developmental
"burn out" -so much is demanded of them in
intervals when a child may be most able to learn
simply meeting the everyday needs of the child
certain skills. Also through early intervention,
and the family that they have no energies left
the cumulative and compounding effects of
over for carrying out teaching programs (Sulli-
deficits can be reduced, even avoided in many
van, 1976).
cases. The very first approximations to appropri-
If families are to be involved in providing
ate developmental responses can be noted and
their handicapped infants and children with
built upon. If the child's environment is devoid
good developmental learning experiences that
of stimulation or filled with stimulation too
run concurrently and complementarily to the
complex for the child to process, the develop-
preschool program, then families must be pro-
ment of bizarre responses is inevitable. The most
vided with a range of supporting and respite
severely handicapped child is learning all of the
services: trained sitters to allow the rest of the
time-learning good responses or poor ones, or
family opportunities to do things together;
learning not to respond at all.
housekeeping and even laundry assistance in the
10
case of incontinent or bedredden children; a
ing members of an interdisciplinary team. Many
variety of flexible day care facilities; and live in
authorities recommended that all teachers of
facilities where a handicapped child may stay for
young children have as a part of their training,
a few days at a time during a family crisis or
opportunities for firsthand practical interactions
family holiday.
with physical and occupational therapists, nutri-
It is unrealistic to expect young handicapped
tionists, communication specialists, psycholo-
children to develop at their best possible rate if
gists, and specialists in other disciplines related
parents, siblings, and peers are not involved in
to the developing child (Connor, 1975; Bricker,
their education. Yet it is equally unrealistic to
1976; Allen, Holm, & Schiefelbusch, in press).
expect such involvement unless parents are
F. Curriculum: There are a number of sound
provided, from the start, with various kinds of
and well tested preschool curriculum guides and
relief and assistance.
models available for use with young handi-
D. Handicapped/nonhandicapped mixes: The
capped children (for example, Harbin & Cross,
coeducation of the handicapped with the non-
1975; Myers, Sinco, & Stalma, 1973; Hart,
handicapped is desirable if it is in the best
1974; Schattner, 1971; and Shearer, 1972).
interests of the handicapped person. This ar-
Research has not identified any one curriculum
rangement is especially important for very
approach as being superior to any other, but
young children. They should be enrolled in the
there are certain components that set successful
least restrictive preschool environment as close
programs apart from unsuccessful ones. These
as possible geographically to their own family
components include a commitment of the staff
and community setting. The first 6 years are the
to a given approach, a high adult to child ratio
years when the basic social, cognitive, and motor
(1 to 3 for handicapped children), concurrent
skills are most likely to develop. These emerging
inservice training, attention to individual differ-
skills have a greater chance of resembling those
ences, strong emphasis on language development
of the normally developing child if the handi-
and cognition, involvement of staff in curricu-
capped child can be in an integrated preschool
lum development, broadly based curricula that
setting. Most handicapped young children, even
foster the development of the total child, family
the severely handicapped, can be successfuly
involvement, and appropriate instructional mate-
integrated without undue strain on the program
rials and equipment (Karnes, 1973).
(Gold, B., 1975). Certainly, for the majority of
In selecting an appropriate preschool curricu-
handicapped children, it is not necessary to
lum it is important to choose one that allows
radically redesign the environment (Allen,
each child to become actively involved in a wide
1975); however, if new facilities are on the
range of enjoyable activities that provide him
drawing board, the omission of certain architec-
with the appropriate sensory and social feed-
tural barriers and the selection of development-
back. The curriculum must also plan for acquisi-
ally appropriate design, furnishings, and equip-
tion of a variety of specific skills. The self-help
ment would make it a more desirable facility for
skills are especially important since handicapped
all young children, handicapped or otherwise.
children cannot survive without them in any but
E. Staff: Radical redesign of preschool staff-
the most restricted environment. On the other
ing patterns is not necessary either, although the
hand, the teaching of self-help skills should not
number of handicapped children and the sever-
dominate the program; there must be equal
ity of their handicapping condition must, of
emphasis on the acquisition of other basic
course, be taken into account. One adult for
communication and developmental skills and
every 3 to 5 children is usually a comfortable
provision for activities that relate the various
ration (Moore, undated).
developmental areas. To accomplish this, the
What is more important, though, is the
handicapped child must be provided with those
quality of attention that is provided. The staff
experiences basic to learning for all children
should be composed of teachers and aides who
which he is not likely to encounter:
understand developmental processes and individ-
ual differences, who can program for each
1. He must be given many opportunities to
minute step taken by the handicapped child,
explore the environment since he will probably
who can deal with biological and behavioral
be deprived in several areas of sensory stimula-
dysfunctioning, and who can work as reciprocat-
tion.
11
2. He must be provided a strong physcial
capped students are like other students in
education component.
needing opportunities to explore the natural and
3. He must have a structured program of play
man-made environment and, through education,
activities with peers, which recognizes that the
to acquire the skills that make such explorations
most rudimentary of play behaviors will need to
meaningful and enjoyable. Severely handicapped
be taught.
students are not unique in needing to participate
4. He must be supplied with an intensive and
in social relationships and activities, both in and
carefully sequenced communication program
out of school. They need to interact with
built upon even the most remote of first
nonhandicapped persons who can "model" cer-
approximations to preverbal communications
tain kinds of behavior for them to learn.
responses.
Handicapped persons need all of these experi-
ences in an environment where differences are
Evaluation. Every early childhood education
reduced and mutual tolerance-and apprecia-
program must contain systematic procedures for
tion-is increased.
observing, recording, and reporting child and
The term "severely handicapped" as used here
group progress. Only by keeping such records
refers to persons who have multiple impairments
can there be useful feedback for teachers and
or impairments of such severity that they
family, improved staff communication and rela-
require extraordinary assistance in educational
tionships, and accurate information upon which
and other life situations. Included in this group
to plan and make valid decisions for each child
are persons who have spent the major portion of
and for the group as a whole.
their lives in public institutions and who are now
being placed in the community. Many of these
The Critical Early Years
persons have had no education and pose special
problems to local educational systems.
The early years are truly the years of educa-
By definition, the impairments of severely
tional payoff. Today's severely handicapped
handicapped people have more intense and
infants, toddlers, and preschoolers need not fit
pervasive effects; their problems are more com-
that category 5 or 50 years from now; being
plicated than are those of mildly or moderately
handicapped does not imply a static condition,
handicapped persons. Yet whether one can say
but rather a developmental process much like
with assurance that these problems are so
growth itself. Through the specialized assistance
qualitatively different as to be unique or that,
in a dynamic rather than a static learning
instead, they are merely exaggerated versions of
environment, young handicapped children are
other problems, is a moot point. Rather, pre-
provided the opportunity to attain their full
cisely because the problems are complicated and
potential.
present so many challenges, educators are evolv-
ing unique responses. Moreover, educators along
EDUCATIONAL PROBLEMS OF THE
are responsible for devising these strategies,
SEVERELY HANDICAPPED
adaptations, modifications, and procedures; no
other professional group has been told in a
Any discussion of the educational problems
legislative mandate to turn around decades of
of severely handicapped persons must begin with
neglect and mismanagement of this population.
the recognition that many of these problems and
The leadership exerted by the Bureau of Educa-
needs are not unique. For instance, severely
tion for the Handicapped (HEW) has greatly
handicapped persons, like nonhandicapped per-
facilitated development of these responses.
sons, have the right to an education and need
that education to be individually and appropri-
Factors Influencing the Design of
ately tailored. Severely handicapped persons are
Educational Strategies
not unique in needing positive response from
other-affection and attention-within and out-
When federal legislation, Public Law 94-142,
side the educational setting. They are not unique
is fully implemented, the country's severely
in needing barrier-free access to education, with
handicapped children and youth will achieve full
removal of attitudinal barriers as well as the
realization of their right to an education, a right
more obvious physical ones. Severely handi-
traditionally enied rather than granted. For
12
educators the legislation is also promising be-
that require lifelong attention from others. It
cause it affords opportunities to observe stu-
was pointed out earlier that educational inter-
dents, collect information, increase understand-
vention should begin for these persons at birth.
ing, and sharpen skills related to teaching a
The continuation of that statement is that
population that is new to the classroom. We
educators must be involved in planning and
need to keep reminding ourselves that manage-
coordinating the comprehensive, lifelong man-
ment of severely handicapped persons has only
agement of severely handicapped persons.
recently become an educational rather than
Schools represent a community based organiza-
merely a custodial concern.
tion with the facilities and resources to perform
The following are some of the factors now
these functions intelligently, with minimal ad-
taken into account as both pupils and teachers
ministrative shuffling.
reap the benefits of the legislative mandate.
E. New skills needed by educators: Educators
A. Early recognition of handicaps: Most
of severely handicapped persons require speciál-
severely handicapped children can be recognized
ized training because they need many new skills.
as severely handicapped shortly after birth. The
The skills fall into at least four categories.
full extent of their impairments may not be
The first category concerns the precise, sys-
known for some time, and prognostic statements
tematic arrangement and presentation of instruc-
may have to wait for extended information
tional cues. Early attempts to educate severely
collection. However, these persons can be identi-
handicapped students failed because they began
fied in early infancy and be referred immedi-
with instructional steps that were too broadly
ately to appropriate educational and other serv-
defined. Expectations were too high at the
ices.
beginning of the instructional sequence, and
B. Early provision of services: The earliest
there was disappointment when the pupils failed
possible referral to services is urgent. It.is now
to "cope" with those steps. Learning steps must
clear that the earlier individualized educational
be sliced more "finely"-what where formerly
planning begins, the greater will be the gains
considered beginning skills may in fact be the
students make in performing all skills. The most
end product of many prerequisite skills. Current
effective time to start educating severely handi-
educational technology permits teachers to ana-
capped persons is at birth, and the benefits of
lyze the skill they will be teaching so closely
starting this intervention early accrue not only
that they can break it into as many components
to the infant but to parents as well.
as are necessary for teaching that skill to any
C. Probability of multiple problems: Severely
child.
handicapped persons are likely to have multiple
The second category of new skills is that
problems that require the input of specialists
concerned with competence in new subject
from several disciplines in the classroom. The
matter. If educational intervention for severely
mode of delivery should not be a critical
handicapped persons must begin early, the "cur-
problem for the school age child. Classroom
riculum" will be different from traditional
teachers can, in some cases, be trained to deliver
school programs. The instruction will include
some services traditionally offered by other spe-
skills or behaviors that occur in infancy: the
cialists; at other times, the specialists will per-
most basic self help skills, the earliest motor and
form these interdisciplinary services. What is
cognitive skills, and so on. What is important to
crucial, however, is that this input be available
remember, however, is that these skills may
and that it be integrated into the classroom
often be part of the curriculum for older
program. At the very least, the following special-
children who have not participated in an educa-
ists (representing several disciplines) must be
tional program before. For them, too, teacher
intensively involved in education and planning
will need to teach such basic skills as making eye
for severely handicapped children: medical spe-
contact and using muscles that have not been
cialists, language and communication disorders
trained. This represents a significant departure
specialists, developmental specialists (for in-
from conventional topics for most public school
stance, occupational or physcial therapists), and
teachers.
family, home, and community specialists.
The third category of skills deals with data
D. Need for lifelong attention: Severely
collection and measurement. Because education
handicapped persons are likely to have problems
for severely handicapped persons is such a new
13
concept, there is little reliable information about
spite of tremendous ambivalence about such a
what severely handicapped persons can in fact
decision. It is critical that arrangements be made
learn. Further, there are no standardized cur-
for continuing assistance, for respite care, for
ricula or teaching procedures that have been
information dissemination (for instance, news-
adequately tested under controlled conditions.
letters such as Closer Look, published by the
For these reasons, it is urgent that teachers
National Information Center for the Handi-
know how to collect measurement information
capped, Washington, D.C.), and for other aspects
about student performance and how to analyze
of a long term support system.
this information with a view toward improving
G. Focusing on society's goals: Educators
instruction. The most basic considerations are
need to participate in sorting out society's goals
whether or not a pupil is making progress and
for severely handicapped persons. Society has
whether or not an instructional program is
never articulated-or been forced to articulate-
working. There is no way to guess at the answers
positive goals for the severely handicapped. Of
to these crucial questions.
course, one can infer earlier negative goals:
The fourth category of skills is in the area of
Severely handicapped persons were to be iso-
working with other specialists and working with
lated from society, stored in instiutions. That is
parents. Several conventional practices are being
no longer legally or morally defensible. Society's
abandoned as teachers instruct severely handi-
goals are emphasized here precisely because
capped pupils. The traditional "boundaries"
schools are social institutions whose purposes
once protected by different disciplines are now
usually are decreed by the particular society.
being crossed. This is happening for reasons that
Schools are thought of as the places where
have been discussed earlier: the problems are
students receive an apprenticeship for full partici-
simply too complex to permit narrow, frag-
pation in adult society. Educators are now
mented attacks on them. Also, the practice of
looking critically at what is being done to
having parents at school only for PTA meetings
prepare these new students for that role. Voca-
or scheduled conferences is giving way to a
tional training, like education, has been gen-
much more intensive and meaningful involve-
erally withheld from severely handicapped
ment by parents in the management of the
persons. Yet recent experiments with training
various aspects of their children's education:
young adults (Bellamy, Peterson, & Close, 1975;
With training by teachers, parents can increase
Gold, M.W., 1972, 1975; Mithaug, 1976) have
their competencies and can continue at home
shown that positive results can be achieved-that
the instructional programing begun in school.
most severely handicapped persons can perform
That carryover is critical for severely handi-
tasks or provide services that are marketable in
capped pupils. What is implicit in all of the
modern industry. These results also indicate that
above is that teachers must now have skills for
curriculum planning must introduce prevoca-
working with adults, who may be as new to
tional training early in a person's education.
classroom involvement as is the new population
of students.
F. Support for parents Professionals need to
Changing Community Attitudes
offer support and training to parents from the
moment the severely handicapped child is identi-
It is insufficient to speak of particular factors
fied. Particularly during the crucial early months
affecting educational planning or even of some-
of a child's life, when the parents are struggling
thing so global as a society's goals. What
to accept the child's impairments and face so
underlies everything discussed here is the neces-
many problems, a total support system is
sity of a basic change in community attitudes
needed, the kind of support that encourages the
toward a population that is usually hidden from
parents to look positively at what they can do
view. It is virtually impossible to plan a com-
for their child. Keeping a child at home is no
munity based intervention-including alternative
easy matter. Parent training thus becomes an
living arrangements, comprehenisve lifelong sup-
essential part of the total planning for severely
port systems and management, or even help to
handicapped children. An untrained, unprepared
parents-without a fundamental willingness to
parent can easily become overwhelmed and
reverse old attitudes and to open the community
decide to place the child in an institution in
to handicapped persons. That means many
14
different accomodations. Physical and architec-
ticularly serious, for underemployment means
tural changes are needed to make community
that the person possesses a greater degree of
resources accessible, something SO simple as
productive capacity than his or her present task
modifying a telephone booth, for instance,
demands. To predict that this will be the fate of
Psychological accommodations are required so
2 out of every 5 handicapped persons leaving the
that severely handicapped persons (who may
school system can only be considered as a
look and act differently than other people) are
serious indictment both of the educational
welcomed kindly and intelligently in the com-
system and of the larger society. For too long
munity's meeting and business places and are
society has assumed that a handicapped person
helped wherever necessary in using its resources
should be both pleased with and grateful for any
and recreational facilities. Design of community
kind of work society provided; that for a
facilities should be as "normal" as possible to
handicapped person, boredom on the job is
minimize stigma and isolation.
impossible; and that while most persons have a
The way to change a community's attitudes is
right to seek work compatible with their inter-
to keep severely handicapped people in the
ests and aptitudes, such considerations do not
community and to demonstrate the effectiveness
apply to the employment of handicapped per-
of education in enabling these persons to func-
sons.
tion well. Success generates more success.
But one final note-for some people, the very
success of severely handicapped persons as they
Career Education for the Handicapped
become integrated into the life of a community
may be as disturbing as is their presence there.
Although fundamental principles of career
Competent functioning of this kind startles
education are common to all citizens, handi-
some people; it upsets their biases and stereo-
capped citizens both contribute and need some
typed views of "the handicapped. The point is,
distinctive shifts in emphasis. Career education's
simply, that changing attitudes is the most
emphasis on strengths and assets, its refusal to
difficult and complex problem of all-and it is
emphasize failure and shortcomings, and its
the one most in need of solving.
avoidance of diagnostic labels and stereotypes
seem to hold a positive potential for handi-
CAREER EDUCATION
capped persons who all too often are made well
aware of their limitations and in the process are
Career education is an area of study within
limited in discovering their talents.
the total school curriculum that is concerned
The diversity of skills and differing capaci-
with the future occupation of the individual. In
ties for independent functioning found in the
the past decade, career education for handi-
general population is even greater in the handi-
capped persons has been a topic of concern but
capped population. Some individuals who have
not of signficiant action. In a 1973 paper, C.
severe and/or multiple handicaps will be limited
Samuel Barone presented the following data
in the kind of activity and in the degree of
about the approximately two and a half million
personal independence possible to them. The
handicapped youth leaving the school systems in
responsibility of public education is to provide
the four years to come. About 525,000 (21%)
experiences and to organize these experiences in
will either be fully employed or be enrolled in
such a way that they are relevant, meaningful,
college; 1 million (40%) will be underremployed
and appropriate.
and at the poverty level; 200,000 (8%) will be in
While some entry level skills for some handi-
their home communities and idle much of the
capped individuals are stressed in the vocational
time; 650,000 (26%) will be unemployed and on
aspect of career education, the focus should be
welfare; and 75,000 (3%) will be totally depend-
on personal skills, work attitudes, and flexible
ent and institutionalized. Such predictions raise
work habits so that an individual can be fairly
grave concerns both for those who are involved
readily retrained or can adjust to the constantly
in career education and those who are interested
changing occupational market. For selected
in the welfare of the handicapped.
handicapped students at the secondary level and
The prediction that 1 million young handi-
all handicapped individuals at the postsecondary
capped persons will be underemployed is par-
level, the development of technical skills is an
15
important prerequisite for job entry. For handi-
in today's society. A basic principle of
capped individuals, such preparation may enable
career education is the emphasis on a
them to practice a profession, to be employed in
person's successes, accomplishments, at-
a sheltered workshop, or to take care of their
tainments, not on failures or shortcomings.
basic needs in the home.
Career education provides individuals with
skills and concepts and a concept of them-
The Scope and Goals of Career Education
selves, SO that they can more readily cope
with change and modification. Sidney Mar-
Kenneth Hoyt, Associate Commissioner for
land (1971) defined career education as a
Career Education in the U.S. Office of Educa-
"broader understanding of the purposes of
tion, has indicated that "career education is the
education in today's highly sophisticated,
total effort of public education and the com-
technical, change-oriented society."
munity to help all individuals become familiar
Studies have established that most individ-
with the values of work-oriented society, to
uals will experience three to five fairly
integrate these values into their personal value
signficant occupational shifts in their life-
systems, and to implement those values in their
times. One of the responsibilities of the
lives in such a way that work becomes possible,
educational system is to help provide the
meaningful, and satisying to each individual"
readiness for coping with such changes.
(Hoyt, Evans, Mackin, & Margum, 1974). In
Career education thus helps society support
Hoyt's framework and in most of the literature
individuals in getting and finding other
concerning career education, "work" is defined
necessary or desirable employment and in
as a conscious effort to produce benefits for
securing appropriate training or retraining.
oneself and/or others. Both paid work and
unpaid work are included in this concept, which
Agents of Career Education
speaks to the need of all persons to be produc-
tive as well as to find meaning in their lives
While education bears a mandated responsi-
through their own accomplishments.
bility for career education of the handicapped,
In further exploring the concept of career
other parts of society have particular and valu-
education, some premises common to both
able contributions to make.
handicapped and nonhandicapped persons
A. The business community: The business/
emerge:
labor/industry sector of our community is an
integral part of career education. Some of the
Since both "career" and "education" span
contributions that this sector can offer include
preschool through retirement, career educa-
providing work experience and work-study
tion must also span the entire life cycle.
opportunities for students and for those who
The concept of productivity (including
educate the students (teachers, counselors, and
both paid and unpaid activities) is central
school administrators); serving as career develop-
to the definition of work and career educa-
ment resource personnel to teachers, counselors,
tion. Thus work includes the activies of the
and students; and participating in part time and
student, the homemaker, and the volun-
full time job placement programs, in career
teer.
education policy formulation, and in curriculum
The degree of independence an individual
development.
can exercise and the degree of his/her skill
Career education programs that merge educa-
in terms of vocational or occupational
tion and the world of work in a practical sense
activities varies; the goal of career educa-
help to minimize misinformation, unfounded
tion is to assist each individual in achieving
fear, and reticence on the part of employers.
the optimum.
When employers are involved in the curriculum
Career education extends that which stu-
development of career education programs and
dents are asked to learn at school to the
when they are working with students in school
world of work. Basic academic skills, a
and in their places of employment, they begin to
meaningful set of work values, and good
deal with individuals and are less likely to
work habits represent adaptability tools
categorize the handicapped or to generalize
needed by all persons who choose to work
about their career potential.
16
B. Family: The attitude of the family is most
handicapped individuals. One obvious and perva-
significant in the career development of the
sive problem is that of physical access to
handicapped. Because of a greater sense of his
educational programs, training facilities, and
special physical, emotional, or intellectual needs,
employment areas.
the handicapped person often is treated by his
Geography is an additional complication for
family as a very dependent individual. Family
some of the handicapped. In particular, the
expectations for the handicapped individual
handicapped in rural areas frequently do not
frequently are significantly lower than his ability
have opportunities for education, training, and/
would allow. Moreover, parental attitudes
or employment. (This factor was noted in the
toward work and toward education are powerful
Maryland study cited below.) One response to
influences on the career development of all
such a need is the development of residential
children. Career education programs for the
services conjoint with day facilities (vocational
handicapped must work to modify such attitudes
schools, community colleges, etc.).
through information and other experiences.
Another problem is that of insuring appropri-
C. Counseling and guidance profession: The
ate and adequate funding for programs of career
attention to the needs of special populations and
education for the handicapped. In 1975 the
particularly the area of the handicapped has
Maryland Advisory Council on Vocational Tech-
been noted by the National Advisory Council on
nical Education conducted a study directed at
Vocational Education. In their sixth annual
the unmet needs for vocational training in that
report (1975) they recommended that increased
state, and one of the significant populations
resources be made available to special popula-
identified as needing training was the handi-
tions: "Special populations are in need of
capped.
improved quality and quantity of career guid-
Maryland's findings are also borne out na-
ance and counseling services." They also noted
tionally. Although the Vocational Education
that employment service and vocational rehabili-
Act of 1968 stipulated that at least 10% of Part
tation counselors are evaluated in terms of
B funds (Basic State Grant Programs) be allo-
number of cases closed rather than quality of
cated for the development and implementation
service provided, and they recommended that
of vocational education programs for handi-
steps be taken to modify this practice.
capped individuals in each state, the 1974 report
The American Personnel and Guidance Asso-
by the US General Accounting Office (analyzing
ciation's Borad of Directors at its meeting in
funds through 1973) found the actual overall
December 1974 adopted a position paper on
range varied from 8% to 17% with an average of
career guidance and the role and functions of
11%. There were 14 states, in fact, that had not
the guidance and personnel practitioner in rela-
met the minimum compliance requirements of
tion to career education. The paper identified
10%. Other available data similarly indicate that,
seven functions appropriate to the career guid-
while more money has been appropriated for
ance practitioner in behalf of furthering career
vocational programs for handicapped, individ-
education: serving as liaison between educa-
uals, a significant number of handicapped indi-
tional and community resource groups; conduct-
viduals are not being served in vocational educa-
ing career guidance needs assessement surveys;
tional programs.
organizing and operating part time and full time
educational, occupational, and job placement
programs; conducting followup, follow-through,
Development of Programs in
and job adjustment activities; participating in
Career Education
curriculum revision; participating in efforts to
involve the family in career education; monitor-
Despite the real and necessary participation of
ing and assessing professional activities; and
various societal elements in career education, the
communicating the results of these activities to
school is the most pervasive agency in shaping
other practitioners.
the future career directions for the handicapped
individual. For too long the concept of most
Barriers to Career Education of the Handicapped
educational programs has been that the handi-
capped individual will fit and be fitted into jobs
Consideration must be given to some of the
at the skilled and unskilled level; too few
obstacles to career education that confront
handicapped individuals have been assisted in
17
their own choices or in their own efforts to
Exploring All the Possibilities
pursue higher education and/or go into a broad
range of career choices. Task analyses involved
In summary, career education's goal is to
in assessing career roles at all levels and relating
make work possible, meaningful, and satisfying
them to the interests and capabilities of handi-
for all individuals. To achieve this for handi-
capped individuals is a critical need.
capped persons society must respect their right
Although most special education school pro-
to choose from the widest possible set of
grams have been vocationally oriented, much of
opportunities. Until the total array of work
the recent support and impetus for career
possibilities for a handicapped citizen has been
training has come from the Rehabilitation
explored and made functionally possible, society
Service Administration and state Division of
is less than fair to the person and less than just
Vocational Rehabilitation (DVR) resources. In
to itself.
many states, DVR personnel have been energetic
and relatively successful in exploiting commun-
CONTINUING EDUCATION
ity resources for the career training of handi-
Continuing education is the process by which
capped individuals.
an individual may at any age level- enter into a
The development of programs in career educa-
training program to further his or her vocational
tion for students in special education programs
or avocational goals.
and for students who wish to work with
handicapped individuals should be encouraged,
The Need
even though these programs have increased in
number within the past 5 years. In 1973 The
Rapidly changing social conditions require
Council for Exceptional Children conducted a
early and appropriate adaptations of behavior.
conference concerned with career education and
These adaptations depend heavily upon the
handicappped students. One of its strong direc-
acquisition of new knowledges and skills, many
tions was the movement away from labeling and
of which are not learned spontaneously by
categorization and toward the mainstream con-
exceptional individuals. Consequently, a process
cept. The conviction was stressed that as long as
of lifelong instruction is needed to equip post-
the handicapped individual was stereotyped,
school individuals in all age ranges and diability
labeled, segregated, and treated separately in
groups with the new responses that will deter-
school that the broader society would continue
mine a handicapped person's survival, let alone
to treat him similarly in employment, in higher
success, in our society. Currently, school pro-
education opportunities, and in other considera-
grams for the exceptional generally terminate at
tions. Also emphasized was the team approach-
age 21 or earlier despite the evident need for
the necessity of a variety of disciplines assisting
continuing education. In a few communities,
the child and the teacher in developing realistic
nonschool agencies are making spasmodic
self concept and career related attitudes and
attempts to provide lifelong education services
skills. This should be a lifelong process which
to persons with certain disabilities, but such
impacts on adults at all stages of development.
programs reach only a small minority of handi-
As Talagan (1973) commented, "The process
capped adolescents and adults. In view of this
of using the community must be a sequential
situation, millions of exceptional individuals are
one where teachers explore from kindergarten
unable to sustain themselves adequately in the
up the possibilities of work contained in the
community at even the adaptations levels that
community. We should no longer build curricu-
they reached during the school years. Continu-
lum in the 'ivory tower' of the university. We
ing education should be considered as one area
should build curriculum in the community
of the need for comprehensive services for the
where we ask people in business what they want,
handicapped individual. Comprehensive services
where we ask employers what they want, and
will include total programs in the services of
where we ask the children what they want."
health, education, and welfare.
Add to this data the information getting back
into the career education programs from the
The Barriers
labor force students. Only in this manner can
career education be held accountable to its own
Some of the central barriers to continuing
graduates.
education for handicapped individuals are that:
18
1. Mandatory education often extends only
of relatively short duration and terminate either
to age 21 at the maximum.
when the stipulated goals have been attained or
2. The adult special education tradition is not
the disable individual has benefited to the fullest
strong in the United States.
degree possible from the program. Other than a
3. Special education has traditionally ad-
small number of continuing education programs
dressed itself to younger individuals.
for the handicapped offered by local disability
4. The possible content and procedures for
organizations, continuing education for the ex-
continuing education for the handicapped have
ceptional has been carried out in the framework
not been explicity described.
of the local adult education mainstream, which
5. Suitable adult education service delivery
has generally operated on a small scale. Some of
systems have not yet been evolved for urban,
the most effective programs have emerged in day
suburban, and rural areas that overcome prob-
centers for the retarded and other disability
lems of transportation; limited physical, intel-
groups. These range widely in goals and quality,
lectual, emotional, and learning capacities; and
and efforts need to be made to enlarge the
stereotyped and irrelevant curricula.
scope, programing, and comprehensiveness of
6. Industry does not have adequate experi-
these programs.
ence in modifying their training programs to
accommodate handicapped individuals.
Restructuring Continuing Education
for the Exceptional
Types of Continuing Education
Rusalem (1972) has suggested that a new
Differences among exceptional people create
conceptual context is needed for continuing
a need for a variety of adult education options,
education. The overarching concern should be a
including:
view of the exceptional individual as a develop-
1. Continuing career education and voca-
ing person throughout the life span with almost
tional training for employed persons who need
limitless growth possibilities, which could be
to have their vocational skills upgraded to meet
realized within the confines of an effective
a changing labor market.
continuing education program. From this per-
2. Leisure education to enable handicapped
spective, the needs are to:
individuals to use their time constructively and
pleasurably as the aging process modifies inter-
1. Ascertain developmental potentials and
ests and capacities.
goals for each handicapped adolescent and adult.
3. Health education to assist exceptional
2. Maintain an exceptionally rich and re-
adolescents and adults to understand their
sourceful continuing education program from
changing disabilities more fully and to maxi-
which individualized program choices may be
mize their residual capacities through informed
made.
self care and efficient use of health resources.
3. Deliver long range counseling to the excep-
4. Environmental awareness to enable the
tional person to help him or her make the best
mentally retarded (as well as others) to better
use of these expanded resources.
understand the changing demands of daily living
and improved means of managing their lives as
Continuing Education Procedures
independently as possible within the context of
social change.
A variety of continuing education arrange-
ments should be tried to ascertain the conditions
5. Continuing educational experiences aimed
under which each is suitable for various dis-
at the identification and development of maxi-
mum potential.
ability groups and individuals in those groups.
Among the promising arrangements are (a) adult
Current Status of Programing
"colleges," (b) life span education and rehabili-
tation centers, (c) extension of existing special
Rehabilitation agencies often provide continu-
education programs to the postschool group, (d)
ing education targeted toward improved func-
adult home study and home instruction pro-
tioning levels. However, almost all of these
grams, (e) expansion of use of telecommunica-
programs (for example, in the area of daily living
tions in adult education, and (f) the develop-
remedial education, and vocational training) are
ment of educational self help groups in which
19
handicapped persons instruct other handicapped
PERSONNEL REQUIREMENTS FOR
persons.
EDUCATION OF THE HANDICAPPED
The Learning Dimension
Supply and Demand
About 130,000 special teachers of the handi-
Rusalem and Rusalem (1975) discovered in
their Learning Capacities Research Project that a
capped are employed in the United States,
large majority of severely disabled adults have
mostly in service to children in the school age
range (5 to 17 years old). It has been estimated
serious learning problems. Some of these prob-
(Balow, 1973) that about 240,000 more such
lems are recognized in the school years, but
teachers would be required just to serve all
despite all instructional efforts, they persist and
often become exacerbated. Others were not
handicapped students of school age, thus giving
fully recognized in the school years but now
a total needed figure of about 370,000. Many
more would be required to provide full services
constitute important barriers to the intellectual
to all children and youth. For example, an
and social growth of the disabled individual. A
estimated 60,000 additional teachers would be
corps of specialists in adult and adolescent
required to serve the estimated 1 million pre-
learning problems is needed to implement the
school age handicapped children, and great but
techniques evolved by the Learning Capacities
unmeasured needs exist to prepare teachers for
Research Project so that the instruction offered
secondary and postsecondary schools, partic-
in continuing education for the exceptional can
ularly for vocational programs.
be keyed to the learning attributes of those
served. Indeed, the limitations that many handi-
Preparation Centers
capped persons have in acquiring new skills and
knowledges from the natural environment not
The role of colleges and universities as the
only lead to impoverished lives but also to
only agencies authorized to offer credit for
extreme dependence and institutionalization.
professional study is changing. In some places
local school systems may assume the role of
Potential Solutions
inservice trainers. Coordination must take place
between higher education training institutions
To avoid unnecessary dependence and institu-
and local school systems for implementing the
tionalization of the handicapped, action must be
variety of training programs needed to supply
taken by those responsible for their education.
personnel to train handicapped students.
Following are some steps which should be
The present state of employment and the
considered:
preservice preparation of teachers of the handi-
capped represent a vast change in the past three
1. An adult and continuing education section
decades. For example, in 1948 only 77 colleges
could be developed in the Bureau of Education
were known to be providing a training sequence
for the Handicapped with earmarked funds to
in even one category of special education; by
support programs in this area.
1954 the number was 122 (Mackie & Dunn,
2. A national continuing education center for
1954); and now it is well over 400. Many of the
the handicapped could be developed to assume
colleges now involved in special education
leadership in creating and demonstrating innova-
teacher preparation offer a variety of sequences,
tive programs.
and thus there has been a large increase in
3. Local special education programs could be
training capacity. Much of the recent growth in
mandated to offer lifelong services.
preparation program reflects the burgeoning
4. Self-help educational programs could be
federal participation in the funding of programs
organized and funded.
through the Bureau of Education for the Handi-
5. Learning capacities approaches could be
capped.
incorporated into all educational activities for
Categories for Certification, Training, and
handicapped adolescents and adults.
Employment
6. Short term workshops or institutes could
instill specialized skills in handicapped individ-
Most states now offer certification to teachers
uals.
(including speech clinicians) in about seven or
20
eight different categories of special education
and approaches should provide a clearer picture
(see Abeson & Fleury, 1972). College training
of the most efficacious certification techniques.
programs and employment opportunities have
tended to follow the same categories. Those
The Distribution Problem and Potential
most frequent are as follows: educable mentally
Solutions
retarded, speech correction (therapy, clinicians,
etc.), learning disabilities, emotionally disturbed,
Special education services have always been
hearing impaired, visually impaired, ortho-
maldistributed, but never SO obviously as now
pedically (and other health) impaired, and
when courts have directed that all children be
trainable mentally retarded.
served. One key facet of the distribution prob-
There is some indication that the number of
lem is that specialists tend not to go to certain
different kinds of certificates may be tending to
high need areas for employment. For example, it
diminish. The DELPHI survey conducted as part
is difficult to place highly trained teachers of
of The Professional Standards and Guidelines
Braille and of Mobility in rural areas where they
Project of The Council for Exceptional Children
would serve a small number of widely scattered
(Reynolds, 1973) showed that special education
visually handicapped children and where a major
"leaders" expected the special education certifi-
portion of their time would be spent in travel-
cation categories to come down from seven or
ing. Somehow, better methods of recruitment,
eight to about four. That view was shared by
placement, and utilization of specialized person-
state directors of special education and college
nel must be found so that the obligation to serve
faculty members. The survey was interpreted as
children in normal environments can be realized,
showing "strong expressions for reducing the
even for those in remote and rural areas.
number of different kings of state certification."
One possible solution may be for federal and
Other parts of the survey showed that the
state officials to organize a hierarchical system
most likely emerging pattern would be to hold
in which personnel needs are specified for whole
firmly to special certification in three areas-
states or broad regions; then the corresponding
speech correction, thearing impairments, and
training functions could be allocated to institu-
visual impairments-while collapsing across some
tions of higher education. Recruitment, training,
of the other categories. This trend, if it crystal-
and placement of trainees would be monitored
lizes as anticipated, would not necessarily show
and evaluated according to distribution needs,
lesser concern for specialized roles and speci-
including the needs of rural areas. There are
ficity of competencies. Rather, it might show
some signs of movement in that direction;
only that the degree of specificity in negotia-
programs of voluntary coordination by colleges
tions for certification between individuals and
and state department of education are encour-
state departments of education would be re-
aged and are reviewed by federal officers before
duced while negotiations with training centers
training grants are awarded.
and employers become all the more specific.
More funds need to be made available to local
Perhaps, however, such negotiations would be
schools and agencies, thus permitting them to
based more on "competencies" than on tradi-
purchase training. It might be assumed that they
tional categories.
would recruit, select, and provide support for
Additionally, many other studies are tending
training indigenous teacher candidates, those
to show a positive trend toward the develop-
who are firmly committed to return with their
ment of more generic degrees in special educa-
specialized skills to the communities sponsoring
tion such as the combination of competencies in
them. Another probable effect would be to draw
learning and emotional disabilities and mental
training resources of the colleges out to commu-
retardation. Collasping of these specialities
nities where they are needed for on the job
makes it possible for graduates to function
training. This would force college departments
adequately in a broader range of settings. The
of special education to package their programs
movement away from particular course offering
and make them more "exportable."
to an emphasis on competencies is also reflected
in places where standards for certification and
Role Changes
accreditation are being formulated and refined
(Reynolds, 1973). As more states adopt "right
Current forces and trends appear to be foster-
to education" statutes, the base of experience
ing some predictable role changes for special
21
education personnel. Listed below are some
3. The "waiting time" for child study in
tentative observations and predictions about
special centers will hopefully disappear or be
these role changes:
reduced.
4. More study of the child's school and total
A. Special education as a support system: It
life situation as an adjunct to direct assessment
appears to be the case now as well as a persisting
of the child will occur.
trend that more special education teachers may
5. Parents will be more involved in studying
go into what might be called support roles, that
children and in making programmatic decisions.
is, teaming up with regular teachers rather than
6. Diagnostic functions will be more broadly
operating laregly in separate classes, schools, and
integrated within the school into learning cen-
centers. Some of the implications of this change
ters, which may also include instructional mate-
are that:
rials and the library.
7. Specialists such as psychologists will be
1. Special education personnel may be less
used more in indirect roles as trainers and
identified with categories of exceptionality
consultants to individual school based personnel.
when working in support roles, However, sup-
8. Much less simple categorization of and
port teachers are not a substitute for the highly
prediction for children and more explicit orien-
trained and specialized teacher who must work
tation to the planning and evaluation of instruc-
with a homogeneous group of students, and
tion will be encouraged.
these specialized classes will remain as part of
9. More effects on total school atmosphere
the educational system.
will be seen as programs for exceptional children
2. Regular teachers will, both through formal
are integrated.
training and work experience with special educa-
tors, become more knowledgeable and resource-
C. More local educational services for the
ful in dealing with exceptional pupils. This will
severely and profoundly handicapped: It is
require extraordinary investments of time and
already the case that many severely handicapped
resources.
children are being returned from institutions and
3. Special education personnel will be se-
hospitals to the community for education. The
lected and prepared for more indirect influ-
implications of this action are:
ences in the schools, as in consultation and
change agent roles.
1. A rising demand for teachers prepared to
4. Major restructuring will occur in the col-
deal with severely and profoundly handicapped
lege training programs for special education
students.
personnel, becoming less categorized and more
2. New demands for paraprofessionals who
integral with general teacher preparation.
can serve in supportive roles in service to the
severely handicapped.
B. More child study in schools: It may be
3. Increasing attention to complex problems
predicted that traditional methods of referring
of diagnosis as in distinguishing problems of
children to specialists for diagnosis will decline
autism, retardation, and deafness.
in practice, and instead, a diagnostic capacity will
4. More use of nontraditional personnel (such
be built within individual.school buildings. Some
as psychologists) in instructional roles.
the the implications of such a change, will
5. Closer coordination of school and home
special reference to personnel roles, are that:
programs through parental consultation.
1. More dependence will be placed upon
diagnosis by teams of regular school personnel,
RESEARCH AND EDUCATION
including school principals, special and regular
teachers, and others who also carry responsi-
This section of the paper attempts to review,
bility for follow-through instruction-all of this
briefly, the current status of support dissemina-
in cooperation with parents.
tion, and implementation of research on the
2. More training will be provided for parents
education of the handicapped and then to
so that they can participate effectively in deci-
identify both areas of research need as well as
sion making and monitoring concerning the
problem areas related to conducting research on
education of their children.
the education of the handicapped.
22
Before discussing the current status of re-
1975), which is less than 9% of all the research
search and research needs, a few comments
funds expended on the handicapped.
regarding the manner in which the term "re-
The Bureau of Education for the Handi-
search" is used here are relevant. Research is the
capped supports almost all educational research
process of asking questions and the seeking of
on the handicapped. During the 1975 fiscal year
answers to those questions in an objective, con-
that support was divided as follows: approxi-
trolled, and repeatable manner. The objective of
mately 47% was directed to noncategorical
research is to allow the researcher to identify
research, 25% was spent in the area of mental
unequivocal relationships between manipulated
retardation, 8% each was used for the visually
variables and a performance measure of interest.
and hearing handicapped with the remaining
Research is, by its nature, an intellectual enter-
12% spread across the crippled and health
prise. The development of useful products based
impaired, emotionally disturbed, and speech
on the outcomes of research should not be
handicapped. The Bureau's priority areas for the
construed as research. Development uses facts
distribution of funds were as follows: full school
established through research as a basis for
services (48%); child advocacy, career education,
manufacturing usable products. This distinction
and personnel development (13% each); severely
is made because of the increasing tendency to
handicapped (7%); early childhood education
regard development as research rather than as a
(5%); and combined objectives (1%). While it is
by-product of research-based knowledge.
difficult to determine precisely, many of these
research funds were supporting development
Current Status
rather than research activities.
An additional characteristic of the current
Research activity focused on the education of
status of research on the education of handi-
the handicapped has been vigorous for less than
capped individuals deserves mention. No de-
a decade. This is true in spite of the fact that
tailed explication of the research needs in the
public programs for the handicapped have ex-
area of the handicapped person is currently
isted since the turn of the century and have been
available. There are also no coordinated research
prevalent since the middle of the century. While
plans designed to meet the educational needs of
we have learned many things about teaching the
handicapped persons.
handicapped during the past 10 years, we have
also learned how little we actually know. Be-
Research Needs
cause research on the handicapped is in its
infancy, it, obviously, requires more research.
A. Interdisciplinary research results: A major
In spite of the need for research in all areas of
need is the interpretation and dissemination of
the handicapped person's development, not all
the research results from the disciplines of
areas receive the appropriate level of attention.
medicine, biology, and genetics. There have been
Research needs and priorities vary from year to
marked advances in the identification of causes
year more on the basis of complex sociopolitical
of handicapping conditions. These data must be
factors than on any knowledge base. This fact
made accessible to teachers, community agen-
leads to a focus on politically relevant rather
cies, and the public at large.
than scientifically relevant topics for study.
B. Systems for evaluation: The process of
A recent study (Kakalik, Brewer, Dougharty,
evaluating the cognitive, motor, self-help, and
Fleischauer, & Genensky, 1973) esimated that
personal and social skills of handicapped individ-
state and federal governments spend $4.73
uals has two objectives: classification and pro-
billion annually for services to the handicapped.
gram development. A wide range of tools has
Of this sum only $120 million is spent on
been developed for classification. Unfortunately,
research. This means that only 2% of the annual
many of these tools do not lend themselves to
expenditures on behalf of handicapped persons
effective educational programing. Furthermore,
is spent to obtain knowledge on the provision of
as noted by Hobbs (1975), these tools do not
the services purchased. The majority of funds
result in cross catetgorical systems for classifying
spent on research related to the handicapped are
handicapped individuals. Hobbs pointed to the
those from the National Institutes of Health.
critical need for the development of a compre-
Research on the education of the handicapped is
hensive, cross categorical system for diagnosing
estimated at $10.79 million annually (Glickman,
and classifying. The intent of the system would
23
be to provide program planners with educa-
disseminating the results of research and devel-
tionally relevant information about each
opment efforts is the ERIC Document Repro-
student. Given this intent, it should be possible
duction Service. Additional mechanisms other
to develop a system that would be useful for
than journal publications are needed for the
classification purposes and that would also
rapid and widespread distribution of the results
provide precise educational plans for each handi-
of significant research.
capped person classified.
Finally, there is a need for better research
C. Learning characteristics and strategies:
training for both practitioners and researchers.
Educational programs for handicapped children,
Practitioners need to be trained in how to
youth, and adults assume that the instructor has
interpret the results of research, apply the
a general understanding of the learning processes
results of research to their program, and use
of the persons with whom he or she is working.
research techniques to make data based deci-
Practitioners, however, frequently express dissat-
sions regarding their day to day activities.
isfaction with their level of understanding re-
Researchers need to be better trained in identi-
garding their students' learning skills. This fact is
fying researchable questions, designing experi-
not surprising given the lack of empirically based
mentally valid research, and presenting the
descriptions of the learning performances. In
results of their research in understandable lan-
Gallagher's (1975) recent review of child devel-
guage and usable formats. Practitioners can also
opment research and exceptional children, re-
be trained to work with researchers in identify-
search needs within each category of excep-
ing research questions of a programmatic nature
tionality were identified. The most frequently
and implementing projects that could have
identified research need was to identify and
impact on practice. Funding sources also need to
understand the basic learning processes and
be able to make commitments to diverse types
strategies by which the handicapped process
of research programs.
information.
D. Longitudinal research: The Gallagher
PUBLIC INFORMATION AND EDUCATION
(1975) review identified longitudinal research as
an important need. Such research should focus
The Growth of Public Awareness
on:
1. The cognitive and personal and social
As the records from our early beginnings
development of the handicapped, particularly as
show, educational programs for the handicapped
it influences the development of competence.
prior to 1900 were conducted in residential
2. The relationship between family variables
settings. The new century brought public aware-
and the personal and social adjustment of the
ness in general and parent pressures specifically.
handicapped.
By the 1920's, two-thirds of the large cities had
3. The relationship between developmental
special classes.
characteristics, habilitation programs, and the
While communities continued to establish
adult status of the handicapped. A desperate
programs, the real growth of special education
need for information regarding the long term
came at the close of World War II. A number of
nature and quality of life of the adult handi-
young men who had left home physically fit and
capped exists.
respected in their home communities returned as
blind and physically handicapped veterans.
In addition to these general topical areas of
Having established a place in society prior to the
research need, there are research problems in
onset of their handicap, they were able to
need of solution. First, there needs to be a
reestablish themselves in the community and aid
better balance in resource distribution. The
in bringing about a change in attitude regarding
imbalance between biomedical and educational
handicapped persons. In addition to wounded
research funding should be corrected. Support
veterans, the increasing public awareness of the
for basic and applied research should be equal-
results of automobile and home accidents
ized, and there should be a better balance of
created a sensitivity to the special needs of
support between categories of handicap and
persons disabled later in life.
priority areas.
This new awareness created a moral responsi-
A second need is for better research dissemi-
bility for providing opportunities for handi-
nation. The only comprehensive system for
capped children to receive a public school
24
education. As more classes for the blind, deaf,
continual growth of the media's attention to
and physically handicapped were established,
handicapped children and adults. In the past,
parents of retarded children joined to form a
handicapped children have not often been
parents' lobby to provide greater availability of
pictured in books or seen on television. Re-
educational programs for the mentally retarded.
cently, however, Sesame Street, Mister Roger's
Although a number of states have now man-
Neighborhood, and Captain Kangaroo have in-
dated special education classes for all handi-
cluded children with handicaps.
cappèd children, and although Public Law
Although the media appears most receptive to
94-142 mandates educational awareness cam-
its role in public information and education,
paigns in each state, much yet remains to be
those concerned with the education story must
done.
recognize some present limitations and take
Early intervention and the current emphases
measures to overcome them. Daily papers are
on placement of handicapped students in the
primarily interested in news. If the news can
least restrictive environment and on family
report a unique new program, a funding source,
involvement in the educational process make
a new screening device, or items with budgetary
awareness and information about successful pro-
implications, they may be included. The Sunday
graming imperative. The process of identifying
feature may occasionally be devoted to informa-
and enrolling handicapped children in special
tion about the handicapped, and such features
education programs is contingent on the aware-
often will present a human interest story with
ness and attitudes of parents of these handi-
rosy overtones and happy endings.
capped children. Also, potential employers need
Weekly papers will use items eventually if
to be educated about how handicapped people
copy is provided. Most newspapers do not have
can be placed into meaningful employment
sufficient staff to generate this kind of copy. At
circumstances, given selective job placement
the present time it has been found that small
strategies. Handicapped people have repeatedly
newspaper chains are frequently educationally
reported that the disability itself does not create
oriented and that local weekly papers are good
as much of a handicap as the negative attitudes
information disseminators. It would appear that
other people have toward it. Usually the atti-
the most successful programs for awareness and
tudes can be traced to lack of information,
understanding of educational programs are those
misunderstanding, or apprehension concerning
being conducted on the local level but unfortu-
how to deal with handicapped people.
nately in a fragmented and splintered way.
Increasing the Efforts
Education for Prevention
Successful educational programing for the
Continued efforts need to be made to inform
handicapped can no longer be perceived as a
the public at large that many handicapping
self-contained class established to provide for
conditions occur before birth and can be pre-
those children who have been unable to cope in
vented. Also, not all handicapped persons are
regular classes and who will remain dependent
born handicapped but many become so as a
after they have finished school. Availability of
result of accidents, toxic substances, and dis-
early identification, diagnosis, specialized pro-
eases. Many of these conditions can be avoided
graming and services, career awareness, and
through inoculations and simple safety precau-
postsecondary training are all equally important
tions. Constant attention must be paid by
components. Parents need to recognize problems
industry to the development of safe products
and know where to seek help. Service agencies,
and safe working conditions for all humans. The
both public and private, must be aware of each
efforts of the National Safety Council should be
other's existence and know how to coordinate
made readily available.
services. The medical profession must be aware
of and understand the philosophy of special
Present Media Efforts
education programing, as must regular classroom
teachers and school administrators, who will be
Local radio and television stations and news-
involved in placing the handicapped in inte-
papers provide an excellent opportunity to tell
grated environments. The general tax paying
the special education story. One notes the
public must know about differential costs for
25
education handicapped persons, and the neces-
handicapped school age children have the same
sity to support programs of specialized educa-
rights as nonhandicapped students to a free,
tion. They must realize that such costs are
public, and equal educational opportunity.
investments-human investments that profit
Implementation and monitoring of the schools
society.
require the cooperation of parents, advocacy
It has been suggested that generally the use of
groups, and professionals.
media has been more concerned with the public-
2. At a time when education budgets are
ity than public relations. One brief radio or
being reduced or contained, the public needs to
television spot fails to tell the total message.
understand the costs related to a total "inclu-
Educating the media must become a responsi-
sion" program of handicapped persons in educa-
bility of educators, handicapped persons, and
tion. Understanding must, in turn, breed sup-
parents alike. The National Advertising Council
port.
has supported the President's physical fitness
3. A delivery system is the programmatic
program and health related programs in a com-
way of providing an educational program.
prehensive organized way, which tends to make
"Mainstreaming" is the current approach but
an impact. If useful information and a basic
would be more meaningful if defined in the
understanding about the handicapped are to be
terms of the "least restrictive environment."
presented in a sequential meaningful fashion to
Such a delivery system focuses on a full con-
appropriate audiences, such information must be
tinuum range of placement, heavily involves
generated and disseminated in a systematic way.
parents in decision making, and requires an array
of ancillary services.
SUMMARY
4. A recent national movement in the
Although the democratic premise that educa-
education of the handicapped is early childhood
tion is the right of all, throughout the history of
education. The importance of early education is
American education handicapped individuals
stressed. Early stimulation of children and
have faced a policy of exclusion rather than
special programs reduce the number of children
inclusion. It is estimated that in the United
who will need intensive or long-term help and
States there are 7 million (plus 1 million of
will enable many who before were in special
preschool age) handicapped children, who be-
class placements to enroll and function satisfac-
cause of their handicaps require special educa-
torily in the regular school classroom. Family
tion programs. Only about 40% are receiving the
participation is essential, but a range of support-
kind of educational program necessary to
ing and respite services is also needed. Presently
achieve their maximum capacity.
only 25% of the preschool handicapped are
This paper addressed the topic areas of (a)
receiving the appropriate, specialized services
legal right to education, (b) finance, (c) delivery
they need.
systems, (d) early childhood education, (e)
5. The management of severely handicapped
severely handicapped, (f) career education, (g)
persons has just recently become an educational
rather than a custodial concern. Public Law
continuing education, (h) personnel require-
ments, (i) research, and (j) public information
94-142 provides the opportunity for the
and education. Throughout the paper the in-
country's severely handicapped to achieve full
volvement of parents and family was discussed.
realization of their right to an education-a right
The potential impact of the Education for All
traditionally denied rather than granted. Essen-
Handicapped Children Act, Public Law 940142,
tial elements to a total program include: starting
was also noted in the various topic areas.
intervention at birth; intensively involving
Clearly, the implementation of the right to
various disciplines, in addition to the teacher, in
education mandate, and the monitoring of the
the classroom program; planning if necessary for
actions of the schools, are primary issues before
lifelong attention; establishing programs to train
the consumer and professional communities.
educators for new, needed skills; and providing
Key concepts discussed in the paper include the
support and training to parents from the
following:
moment the severely handicapped child is identi-
fied. An underlying factor is the necessity for a
1. Vigorous and imaginative actions of con-
basic change in community attitudes-to reverse
sumers and professionals have been the force
old attitudes and to open the community to
behind the now legally established right that
handicapped persons.
26
6. Career education must span the entire life
better balance in resource distribution, better
cycle since "career" and "education" span pre-
research dissemination, and better research train-
school through retirement. The current predic-
ing for both practitioners and researchers.
tions of unemployment, underemployment,
10. New programs in early intervention,
poverty level employment, total dependence,
placement of handicapped students in the least
and institutionalization for handicapped persons
restrictive environment, programs for the
leaving the school systems are more than a
severely and profoundly handicapped, and
concern, and they may serve as a real indict-
family involvement in the educational process
ment to education and society unless aborted.
make awareness and information about successful
Handicapped individuals should be able to make
programming imperative.
decisions on their own career choice and educa-
tion. Agencies other than education, such as
A total partnership of federal, state, and local
those of business, labor, and the community,
education agencies, along with the consumer and
need to make their contributions to a total
professional community, can reverse the inade-
career program for the handicapped.
quacies of the past and make the goal of educa-
7. A new conceptual context is needed in
tion for all a reality.
the continuing education for the handicapped-a
context that will replace the current orientation
of recreation, busywork, and health with a focus
on the individual as a developing person
REFERENCES
throughout the life span. Handicapped persons
must be viewed as having almost limitless growth
Abeson, A., & Fleury, J. B. (Eds.). State
possibilities, which could be realized within an
certification requirements for education of
effective continuing education program. De-
the handicapped. Arlington VA: State-Federal
livery systems have not yet been created that
Information Clearinghouse for Exceptional
overcome problems of transportation and
Children, The Council for Exceptional Chil-
limited physical, intellectual, emotional, and
dren, 1972.
learning capacities. A variety of continuing
Allen, K. E. Early education for all young
education arrangements, such as adult "col-
children. Paper presented at OCD/BEH Out-
leges," life span education centers, adult home
reach Conference: Give the Handicapped a
instruction programs, should be tried.
Head Start, Arlington VA, September 1975.
8. The need for adequate numbers of
Allen, K. E., Holm, V.A., & Schiefelbush, R. L.
trained personnel continues. Special education
Early intervention-A team approach. Balti-
services have always been maldistributed, but
more: University Park Press, in press.
now with the court mandate to serve all children
American Personnel and Guidance Association.
the situation becomes more critical. Solutions
Career guidance: Role and functions of
may be in the mapping of broad geographical
counseling and personnel practitioners in
regions and allocating corresponding training
career education. Position paper adopted at
functions to certain higher institutions of educa-
the APGA Board of Directors meeting, De-
tion and/or shifting some college training funds
cember 12-14, 1974.
to local schools and agencies permitting them to
Balow, B. B. Statement before the Subçom-
purchase training. The latter assumes that they
mittee on Handicapped of the Committee on
would recruit and train personnel who would be
Labor and Public Welfare, US Senate. Hear-
firmly committed to return with their skills to
ings for March 20, 21, and 23. Washington
the sponsoring communities.
DC: US Government Printing Office, 1973.
9. It is possible to identify an almost limit-
Barone, C.S. Paper presented at Forum of
less number of research needs in the area of the
National Organizations sponsored by Voca-
education of the handicapped. Research related
tional Evaluation and Work Adjustment
to (a) better evaluation/classification systems,
Association, the National Rehabilitation Asso-
(b) understanding the learning strategies of the
ciation, and the Presient's Committee on the
handicapped, and (c) long-term, longitudinal
Employment of the Handicapped, October
studies were identified as three significant areas
25, 1973.
of research need. Three logistic support related
Bellamy, G. T., Peterson, L., & Clse, D. Habilita-
problems were also identified and discussed:
tion of the severely and profoundly retarded:
27
Illustrations of competence. Education and
in early education. In N. G. Haring (Ed.),
Training of the Mentally Retarded, 1975, 10,
Behavior of exceptional children-An intro-
174-186.
duction to special education. Columbus OH:
Bernstein, C. D., Kirst, M. W., Hartman, W. T., &
Charles E. Merrill, 1974.
Marshall, R. S. Financing educational services
Dobbing, J. Human brain development and its
for the handicapped: An analysis of current
vulnerability. In Biologic and clinical aspects
research and practices. Reston VA: The Coun-
of brain development (Proceedings of the
cil for Exceptional Children, 1976.
Mead Johnson Symposium on Perinatal and
Bertness, H. J. Progressive inclusion: One ap-
Developmental Medicine No. 6). Evansville
proach to mainstreaming. In J. B. Jordan
IN: Mead Johnson & Co., 1975.
(Ed.), Teacher, please don't close the door:
Gallagher, J. J. (Ed.). The application of child
The exceptional child in the mainstream.
development research to exceptional children.
Reston VA: The Council for Exceptional
Reston VA: The Council for Exceptional
Children, 1976.
Children, 1975.
Bolick, N. (Ed.). Digest of state and federal
Glickman, L. J. Research activities for handi-
laws: Education of handicapped children (3rd
capped children. American Education, 1975,
ed.). Reston VA: The Council for Exceptional
11 (8), 30-31.
Children, 1975.
Gold, B. Personal communication, 1975.
Bricker, D. Educational synthesizer. In M. A.
Gold, M. W. Stimulus factors in skill training of
Thomas (Ed.), Hey, don't forget about me
retarded adolescents on a complex assembly
(Report on the Invisible College on the
task: Acquisition, transfer, and retention.
Severely, Profoundly, and Multiply Handi-
American Journal of Mental Deficiency,
capped, San Antonio TX, January 1976).
1972, 76, 517-526.
Reston VA: The Council for Exceptional
Gold, M. W. Vocational training. In J. Wortis
Children, 1976, in press.
(Ed.), Mental retardation and developmental
Bureau of the Census. Current population re-
disabilities: An annual review (Vol. 7). New
ports consumer income: Characteristics of
York: Brunner/Mazel, 1975.
population below poverty level, 1974. Series
Harbin, G., & Cross, L. Early childhood curricu-
P60, No. 102, January 1976.
lum materials: An annotated bibliography.
Caster, J. What is "mainstreaming"? Exceptional
(Tadscript #7). Chapel Hill: Technical As-
Children, 1975, 42, 174.
sistance Development System, The University
Child find. Proceedings from the Child Find
of North Carolina, 1975.
Conference sponsored by National Coordi-
Haring, N. Assessment and diagnosis of severely
nating Office for Regional Resource Centers,
handicapping conditions. In M. A. Thomas
University of Kentucky, Lexington; and
(Ed.), Hey, don't forget about me (Report on
National Association of State Directors of
the Invisible College on the Severely, Pro-
Special Education, Washington, DC, March
foundly, and Multiply Handicapped, San
26-27, 1975.
Antonio TX, January 1976). Reston VA: The
Connor, F. P. Some issues in professional prepa-
Council for Exceptional Children, 1976, in
ration-Education of the severely handi-
press.
capped. Educating the 24-hour retarded child.
Hart, V. Beginning with the handicapped.
Paper presented at conference on education
Springfield IL: Charles C Thomas, 1974.
of severely and profoundly retarded students,
Hobbs, N. The futures of children: Categories,
National Association for Retarded Citizens,
labels and their consequences (Report of the
New Orleans LA, March 1975.
Project on Classification of Exceptional Chil-
Cratty, B. J. Perceptual and motor development
dren). San Francisco: Jossey-Bass, 1975.
in infants and children. New York: The
Horowitz, F. D., & Paden, L. Y. The effective-
Macmillan Company, 1970.
ness of environmental intervention programs.
eWeerd, J. Introduction. In J. B. Jordan (Ed.),
In B. M. Caldwell & H. N. Riccuiti (Eds.),
Early childhood education for exceptional
Review of child development research, Vol. 3:
children-A handbook of ideas and exemplary
Child development and social policy. Chicago:
practices. Reston VA: The Council for Excep-
University of Chicago Press, 1973.
tional Children, 1976, in press.
Hoyt, K. B., Evans, R. N., Mackin, E. F., &
Dmitriev, V. Motor and cognitive development
Margum, G. L. Career education: What it is
28
and how to do it (2nd ed.). Salt Lake City:
Center. Seattle WA: University of Washing-
Olympus, 1974.
ton, Experimental Education Unit, 1976, in
Jones, P. R., & Wilkerson, W. R. Options for
press.
financing special education. Paper presented
Moore, C. (Ed.). Preschool programs for handi-
at the 17th National Institute of Educational
capped children-A guidebook for the devel-
Finance, Miami FL, March 1974.
opment and operation of programs. Eugene
Kakalik, J. S., Brewer, G. D., Dougharty, L. A.,
OR: University of Oregon, Regional Resource
Fleischauer, P. D., & Genensky, S. M. Services
Center for Handicapped Children, undated.
for handicapped youth: A program overview.
Myers, D. G., Sinco, M. E., & Stalma, E. S. The
Santa Monica CA: Rand, 1973.
right-to-education child: A curriculum for
Karnes, M. B. Implications of research with
profoundly mentally retarded. Springfield IL:
disadvantaged children for early intervention
Charles C Thomas, 1973.
with the handicapped. In J. B. Jordan & R. F.
National Advisory Council on Vocational Educa-
Dailey (Eds.), Not all little wagons are red:
tion. Sixth annual report. Washington DC:
The exceptional child's early years. Arlington
NACVE, 1975.
VA: The Council for Exceptional Children,
Partridge, D. L. A comprehensive special educa-
1973.
tion program requires a firm foundation and
Karnes, M. B., & Zehrbach, R. R. Alternative
structured support. In J. B. Jordan (Ed.),
models for delivering services to young handi-
Teacher, please don't close the door: The
capped children. In J. B. Jordan (Ed.), Early
exceptional child in the mainstream. Reston
childhood education for exceptional chil-
VA: The Council for Exceptional Children,
dren-A handbook of ideas and exemplary
1973.
practices. Reston VA: The Council for Excep-
Reynolds, M. C. DELPHI suvey-A report of
tional Children, 1976, in press.
rounds I and II (Conducted for the Profes-
Mackie, R. P., & Dunn, L. M. College and
sional Standards and Guidelines Project of
university programs for the preparation of
CEC). Reston VA: The Council for Excep-
teachers of exceptional children (US Office of
tional Children, 1973.
Education, Bulletin 1954, No. 13). Washing-
Rusalem, H. Coping with the unseen environ-
ton DC: US Government Printing Office,
ment: An introduction to the rehabilitation
1954.
of blind persons. New York: Teachers College
Marinelli, J. J. Financing the education of
Press, 1972.
exceptional children. In F. J. Weintraub, A.
Rusalem, H., & Rusalem, H. The learning
Abeson, J. Ballard, & M. L. LaVor (Eds.),
capacities approach. Paper presented at the
Public policy and the education of excep-
Annual Conference of the National Rehabili-
tional children. Reston VA: The Council for
tation Association, Cincinnati, 1975.
Exceptional Children, 1976.
Schattner, R. An early childhood curriculum for
Marland, S. Marland and career education. Wash-
multiply handicapped children. New York:
ington DC: US Department of Health, Educa-
The John Day Company, 1971.
tion, and Welfare, 1971. (Reprinted from
Shearer, D. E. Portage guide to early education.
American Education, November 1971.)
Portage WI: Cooperative Educational Service
Maryland Advisory Council on Vocational-
Agency #12, 1972.
Technical Education. Study of residential
Shearer, M. S., & Shearer, D. E. Parent involve-
vocational technical centers in Maryland.
ment .for the handicapped. In J. B. Jordan
Annapolis MD: MACVTE, 1975.
(Ed.), Early childhood education for excep-
McLure, W. P., Burnham, R. A., & Henderson,
tional children-A handbook of ideas and
R. A. Special education needs-Costs-
exemplary practices. Reston VA: The Council
Methods of financing. Urbana-Champaign:
for Exceptional Children, 1976, in press.
University of Illinois, College of Education,
Sherr, R. D. The benefits, problems and pro-
Bureau of Educational Research, 1975.
posed solutions for public school programs
Mithaug, D. In N. G. Haring (Project Director),
for the severely and profoundly handicapped.
A second year progress report to the Bureau
In M. A. Thomas (Ed.), Hey, don't forget
of Education for the Handicapped: The Cen-
about me (Report on the Invisible College on
ter for the Severely Handicapped and the
the Severely, Profoundly, and Multiply Handi-
Child Development and Mental Retardation
capped, San Antonio TX, January 1976).
29
Reston VA: The Council for Exceptional
children: Issues and recommendations.
Children, 1976, in press.
Reston VA: The Council for Exceptional
Sontag, E. The severely handicapped child in the
Children, 1975.
public school-What we have to do! Educating
Werner, E. E. et al. The children of Kaua I.
the 24-hour retarded child. Paper presented at
Honolulu: University of Hawaii Press, 1971.
conference on education of severely and
Wilken, W., & Callahan, J. State special educa-
profoundly retarded students, National Asso-
tion finance in the 1970's. Draft document
ciation for Retarded Citizens, New Orleans
presented before the National Association of
LA, March 1975.
State Directors of Special Education, Reno
Sullivan, R. C. The future role of the parent. In
NV, October 1975.
M. A. Thomas (Ed.), Hey, don't forget about
Yates, J. R. Special education finance: Prob-
me (Report on the Invisible College on the
lems, issues, solutions, questions. Presented at
Severely, Profoundly, and Multiply Handi-
the Special Education Finance Conference,
capped, San Antonio TX, January 1976).
Chicago IL, 1975.
Reston VA: The Council for Exceptional
Children, 1976, in press.
SUGGESTED ADDITIONAL READINGS
Talagan, D. P. With career education we can
individualize curriculum for children. Excep-
Abeson, A., Bolick, N., & Hass, J. A primer on
tional Children, 1973, 39, 666.
due process-Education decisions for handi-
Thomas, M. A. Finance: Without which there is
capped children. Reston VA: The Council for
no special education. Exceptional Children,
Exceptional Children, 1975.
1973, 39, 475-480. (a)
Deno, E. N. (Ed.). Instructional alternatives for
Thomas, M. A. Extent of services provided for
exceptional children. Arlington VA: The
exceptional children and fiscal capacity of
Council for Exceptional Children, 1973.
states. Unpublished doctoral dissertation,
Lake, T.P. (Ed.). Career education: Exemplary
Indiana University, Bloomington, 1973. (b)
programs for the handicapped. Arlington VA:
(Available from Xerox University Micro-
The Council for Exceptional Children, 1974.
films, Ann Arbor MI, CAT. No. 74-27-12.)
Reynolds, M. C. (Ed.). Mainstreaming: Origins
Trudeau, E. (Ed.). Digest of state and federal
and implications. Reston VA: The Council for
laws: Education of handicapped children (2nd
Exceptional Children, 1976.
ed.). Arlington VA: The Council for Excep-
The Council for Exceptional Children. Basic
tional Children, 1972.
commitments and responsibilities to excep-
US Government Accounting Office. What is the
tional children and policy statement on gov-
role of federal assistance for vocational educa-
ernmental affairs. Arlington VA: CEC, 1972.
tion? Report to Congress and Office of Edu-
Weintraub, F. J., Abeson, A., Ballard, J., &
cation, Department of Health, Education, and
LaVor, M. L. (Eds.). Public policy and the
Welfare, Washington DC, December 31, 1974.
education of exceptional children. Reston
Weintraub, F. J., Abeson, A. R., & Braddock,
VA: The Council for Exceptional Children,
D. L. State law and education of handicapped
1976.
APPENDIX A
THE EDUCATION FOR ALL HANDICAPPED
its approval by a margin of 87 to 7. What
CHILDREN ACT PUBLIC LAW 94-142
follows is a characterization of the major fea-
tures of what is now P.L. 94-142.
On November 28, the President signed into
law S.6, the "Education for All Handicapped
Formula
Children Act." The President's approval fol-
lowed overwhelming endorsement of the House-
P.L. 94-142 establishes a formula in which the
Senate conference agreement in the Congress,
Federal government makes a commitment to
with the House giving its approval to the
pay a gradually-escalating percentage of the
Conference report on November 18 by a vote of
National average expenditure per public school
404 to 7. On the following day the Senate gave
child times the number of handicapped children
30
being served in the school districts of each State
Fiscal 1978
$387 million
in the Nation. That percentage will escalate on
(on the five-percent factor)
a yearly basis until 1982 when it will become a
Fiscal 1979
$775 million
permanent 40 percent for that year and all
(on the ten-percent factor)
subsequent years.
Fiscal 1980
$1.2 billion
(on the twenty-percent factor)
Formula Scale
Fiscal 1981
$2.32 billion
(on the thirty-percent factor)
Fiscal 1978
five percent
Fiscal 1982
$3.16 billion
Fiscal 1979
ten percent
(on the forty-percent factor)
Fiscal 1980
twenty percent
Fiscal 1981
thirty percent
Counting Limitation
Fiscal 1982
forty percent
It should be carefully noted that such a
P.L. 94-142 addresses the potential threat of
formula carries an inflation factor, i.e. the actual
"over-counting" children as handicapped in
money figure fluctuates with inflationary-
order to generate the largest possible Federal
deflationary adjustments in the National average
allocation. The measure prohibits counting more
per pupil expenditure.
than 12 percent as handicapped served within
the total school-age population of the State
Formula "Kick-In"
between the ages of five and seventeen.
As obviously indicated in the preceding head-
Learning Disabilities
ing, the new formula will not go into operation
until fiscal 1978.
P.L. 94-142 retains, with minor alterations,
It will be recalled that previously existing law
the existing Federal definition of handicapped
was already moving toward a permanent, signifi-
children (EHA, Section 602 (I) and (15) of
cant increase in the Federal commitment. Public
extant law), and this definition includes children
Law 93-380, the Education Amendments of
with specific learning disabilites. However, it
1974 (signed August 21 of 1974), created the
would appear at this point of interpretation of
first entitlement for handicapped children, based
conference action that the Commissioner may,
upon factors of the number of all children aged
within one year, provide detailed regulations
three to twenty-one within each State times
relative to SLD, including the development of a
$8.75. This formula (called the "Mathias for-
more precise defintion, the prescription of com-
mula" after its originator), amounting to a total
prehensive diagnostic criteria and procedures,
annual authorization of $680 million, was
and the prescription of procedures for monitor-
authorized for fiscal 1975 only-with a view
ing of said regulations by the Commissioner. If
toward permitting an emergency infusion of
the authorizing committees of the House and
money into the States while at the same time
Senate disapprove the Commissioner's regula-
deferring to final determination of a permanent
tions, then a ceiling on the number of children
new funding formula as now contained in Public
with learning disabilities who may be counted
Law 94-142. This "Mathias formula" would be
by the State for purposes of the formula will be
retained in both bills until "kick-in" of the new
included when the new formula takes effect.
formula.
The ceiling would provide that not more than
one-sixth of the 12 percent of school-age chil-
Ceilings
dren aged five to seventeen who may be counted
as handicapped children served may be children
For the two years of fiscal 1976 and 1977
with specific learning disabilities.
when the formula remains under the "Mathias
entitlement," the conferees set authorization
Priorities
ceilings of $100 million for fiscal 1976 and $299
million for fiscal 1977. On the basis of the
Previously existing law (P.L. 93-380), in
current National average per pupil expenditure,
conformance with the overall goal of ending
the following authorization ceilings are gener-
exclusion, orders a priority in the use of Federal
ated for the first years of the new formula:
funds for children "still unserved." P.L. 94-142
31
maintains and broadens that priority in the
the school district fails to meet the local
following manner:
application requirements;
*
First priority to children "unserved"
the State deems the local district unable to
*
Second priority to children inadequately
make effective use of its entitlement unless
served when they are severely handicapped
it consolidates its entitlement with the
(within each disability).
entitlement of one or more other school
This priority must be adhered to by both the
districts (this apparently allows great flex-
State education agency and its local education
ibility in funding arrangements-inter-
agencies.
mediate districts, special districts, etc.);
when the program for handicapped chil-
Beneficiaries
dren within the school district is of
insufficient size and scope;
P.L. 94-142 stipulates that all handicapped
when the school district is maintaining
children, aged three to twenty-one years, may
"full service" for all its handicapped chil-
enjoy the special education and related services
dren with State and local funds. (This
provided through this measure. There is also
provision will end when all districts within
provision for the use of Federal monies for
the State have reached "full service," at
programs of early identification and screening.
which time a degree of supplanting will in
effect be permitted.)
Pass-Through
Most significantly, P.L. 94-142 sets a flat
monetary minimum. If a school district, after
As finalized, P.L. 94-142 contains a substan-
counting all of its handicapped children served,
tial pass-through to the local school districts. In
cannot generate an allocation for itself of at
the first year of the new formula, 50 percent of
least $7,500, a pass-through to that school
the monies going to each State would be
district does not occur. This provision is, of
allocated to the State education agency, and 50
course, also aimed at encouraging various sorts
percent would be allocated to the local educa-
of special education consortia in order to make a
tion agencies. In the following year, fiscal 1979,
meaningful use of the Federal dollars.
the LEA entitlement would be enlarged to 75
If an SEA withholds a local entitlement under
percent of the total allocation to a given State,
any of the aforementioned circumstances, it
with the SEA retaining 25 percent. This 75-25
must nonetheless assure that the monies gener-
arrangement commencing in fiscal '79 becomes
ated by said entitlement are used to assure the
the permanent distribution arrangement. The
public education of the handicapped children
current State-control of all funds is retained for
residing in the district in question.
the remainder of fiscal 1976 and fiscal 1977.
State and Local Requirements
Constraints Upon Localities
P.L. 94-142 makes a number of critical
Though P.L. 94-142 authorizes a substantial
stipulations which must be adhered to by both
local entitlement, there are numerous "strings
the State and its localities. These stipulations
include:
attached." Initially, the State education agency
will act as the clearinghouse of all data from the
assurance of extensive child identification
localities gathered in order to determine local
procedures;
entitlement, and the State will transmit that
assurance of "full service" goal and detailed
information to the Commissioner. Furthermore,
timetable;
the State education agency may refuse to
a guarantee of complete due process
pass-through Federal monies generated when:
procedures;
the assurance of regular parent or guardian
the school district does not conform to the
consultation;
overall State-plan requirements contained
maintenance of programs and procedures
in this Act and in existing law (such as "full
for comprehensive personnel development
service" goal, confidentiality, etc.);
including in-service training;
32
assurance of special education being pro-
a given state to be designed initially in consulta-
vided to all handicapped children in the
tion with parents or guardian, and to be re-
"least restrictive" environment;
viewed and revised as necessary, but at least
assurance of nondiscriminatory testing and
annually. This provision takes effect in the first
evaluation;
year under the new formula, fiscal 1978. At
a guarantee of policies and procedures to
least the following premises governed inclusion
protect the confidentiality of data and
of this requirement:
information;
Each child requires an educational blue-
assurance of the maintenance of an individ-
print custom-tailored to achieve his/her
ualized program for all handicapped chil-
maximum potential.
dren;
All principles in the child's educational
assurance of an effective policy guarantee-
environment, including the child, should
ing the right of all handicapped children to
have the opportunity for input in the
a free, appropriate public education, at no
development of an individualized program
cost to parents or guardian;
of instruction.
assurance of a surrogate to act for any child
Individualization means specifics and time-
when parents or guardians are either un-
tables for those specifics, and the need for
known or unavailable, or when said child is
periodic review of those specifics-all of
a legal ward of the state.
which produces greatly enhanced fiscal and
It is most important to observe that an
educational accountability.
official, written document containing all of
these assurances is now required (in the form of
Date Certain
an application) of every school district receiving
its Federal entitlement under P.L. 94-142.
It is generally agreed that the Congress ought
to fix a chronological date, however innately
Hold Harmless
arbitrary, beyond which no State or locality
may be failing without penalty to guarantee
P.L. 94-142 stipulates that every State will be
against outright exclusion from the public edu-
"held harmless" at its actual allocation for fiscal
cational systems. Also, it is felt that the States
1977 (the last year of appropriations under the
ought to be given a reasonable, but not lengthy,
"Mathias-formula").
time period in which to reach "full service."
P.L. 94-142 therefore requires that every
Excess Cost
State and its localities, if they are to continue to
receive funds under this Act, must be affording a
P.L. 94-142 provides that Federal monies
free public education for all handicapped chil-
must be spent only for those "excess cost"
dren aged three to eighteen by the beginning of
factors attendant to the higher costs of educat-
the school year (September 1) in 1978, and
ing handicapped children. A given school district
further orders the availability of such education
must determine its average annual per pupil
to all children aged three to twenty-one by
expenditure for all children being served, and
September 1, 1980. However, these mandates
then apply the Federal dollars only to those
carry a big "if" in the area of preschool,
additional cost factors for handicapped children
apparently in the age range of three to five.
beyond the average annual per pupil expendi-
Under P.L. 94-142 such mandate for children in
ture. Such a requirement does not obtain for the
that group would apply only when such a
State education agency in the utilization of its
requirement is not "inconsistent" with State law
allocation under this Act. However, the State
education agency is required to match its alloca-
or practice, or any court decree.
These date-certain assurances must be met as
tion on a "program basis," but is not required to
match with new monies.
a matter of State eligiblity for funding under the
Act, (Section 612).
Individualized Instruction
Due Process
P.L. 94-142 requires the development of an
individualized written education program for
The vital provisions of previously existing law
each and every handicapped child served within
(P.L. 93-380, the Stafford guarantees") toward
33
the guarantee of due process rights with respect
SEA Authority
to the identification, evaluation, and educational
placement of all handicapped children within
P.L. 94-142 requires that the State educa-
each State are constructively refined in P.L.
tional agency be responsible for ensuring that all
94-142 toward at least the following objectives:
requirements of the Act are carried out, and that
all education programs within the State for all
to strengthen the rights of all involved;
handicapped children, including all such pro-
to conform more precisely to court
grams administered by any other State or local
decrees;
agency, must meet State educational agency
to clarify certain aspects of existing law;
standards and bei under the general supervision
to guarantee the rights of all parties relative
of persons responsible for the education of
to potential court review;
handicapped children. This provision estab-
to ensure maximum flexibility in order to
lisheds a single line of authority within one State
conform to the varying due process proce-
agency for the education of all handicapped
dures among the States.
children within each State.
This provision is included in the Act for at
It should be observed that these refinements
least the following reasons:
take effect in the first year under the new
formula, i.e. fiscal 1978. In the meantime, those
to centralize accountability, both for the
basic features of due process as authorized in the
State itself and from the standpoint of the
prior Act (P.L. 93-380) must be maintained by
Federal government as a participant in the
the States.
educational mission;
It should be further noted that, when the
parents or guardian of a child are not known, are
to encourage the best utilization of educa-
unavailable, or when the child is a legal ward of
tion resources;
the State, the State education agency, local
to guarantee complete and thoughtful
education agency or intermediate education
implementation of the comprehensive State
agency (as appropriate) must assign an individual
plan for the education of all handicapped
to act as a surrogate for the child in all due
children within the State as already re-
process proceedings. Moreover, such assigned
quired in P.L. 93-380, the Education
individual may not be an employee of the State
Amendments of 1974, as well as the
educational agency, local educational agency, or
implementation of the further planning
intermediate educational unit. involved in the
provisions of this Act;
education or care of the particular child.
to ensure day-by-day coordination of
efforts among involved agencies;
Federal Sanction
to terminate the all too frequent practice
of the bureaucratic "bumping" of children
If the Commissioner finds substantial non-
from agency to agency with the net result
compliance with the various provisions of this
of no one taking substantive charge of the
Act, with emphasis upon the guarantees for
child's educational wellbeing;
children and their parents, he shall terminate the
to squarely direct public responsibility
funding to a given locality or State under this
where the child is totally excluded from an
Act, as well as the funding of those programs
educational opportunity;
specifically designed for handicapped children
to guarantee that the State agency which
under the following titles:
typically houses the greatest educational
Part A of Title I of the Elementary and
expertise has the responsibility for at least
Secondary Education Act
supervising the educational mission of all
Title II of the Elementary and Secondary
handicapped children;
Education Act (innovative programs) and
to ensure a responsible public agency to
its successor, Part C. Educational Innova-
which parents and guardians may turn
tion and Support, Section 431 of P.L.
when their children are not receiving the
93-380
educational services to which they are
The Vocational Education Act
entitled.
34
Special Evaluations
is a separate "line item" appropriation, inde-
pendent of the larger P.L. 94-142 entitlement.
P.L. 94-142 orders a statistically valid survey
of the effectiveness of individualized instruction
Advisory
as mandated in the legislation. P.L. 94-142 also
orders the U.S. Commissioner to conduct an
P.L. 94-142 orders that each State shall have
evaluation of the effectiveness of educating
an advisory panel to be appointed by the
handicapped children in the least restrictive
Governor or any other official authorized under
environment and orders the Commissioner to
State law to make such appointments. This
evaluate the effectiveness of procedures to pre-
panel must be composed of individuals involved
vent erroneous classification of children.
in or concerned with the education of handi-
capped children, including handicapped individ-
Supplanting
uals, teachers, parents or guardians of handi-
capped children, State and local education
P.L. 94-142 carries a stipulation which per-
officials, and administrators of programs for
mits the U.S. Commissioner to waive the provi-
handicapped children.
sion against supplanting of State and local funds
The panel shall have the following duties:
with Federal dollars when a State presents clear
and convincing evidence that all handicapped
advise the State education agency on
children within said State do in fact have
unmet needs relative to the education of all
available to them a free, appropriate public
handicapped children within the State;
education.
comment publicly on rules and regulations
issued by the State and procedures pro-
Employment
posed by the State for distribution of
funds;
P.L. 94-142 stipulates that recipients of Fed-
assist the State in developing and reporting
eral assistance under this Act shall make positive
such data and evaluations as may assist the
efforts to employ and advance in employment
U.S. Commissioner.
qualified handicapped individuals.
Native Americans
Architectural Barriers
Not more than one percent of the funds
P.L. 94-142 authorizes such sums as may be
available under P.L. 94-142 are targeted for
necessary for the U.S. Commissioner to award
supporting the special education of American
grants to pay all or part of the cost of altering
Indian children on the reservations serviced by
existing buildings and equipment to eliminate
elementary and secondary schools. However, the
architectural barriers in educational facilities.
Commissioner of Education may make such a
Such provision is aimed at assuring certain
payment to the Secretary of the Interior
handicapped children an appropriate public edu-
(Bureau of Indian Affairs is within Interior) only
cation in the least restrictive environment.
after receiving an application from the Secretary
of the Interior which meets all of those require-
Preschool Incentive
ments contained in this summary under the
heading STATE AND LOCAL REQUIRE-
P.L. 94-142 carries a special incentive grant
MENTS. Thus, for instance, the Secretary of the
aimed at encouraging the States to provide
Interior must assure all of those educational
special education and related services to its
rights for Native American children required of
preschool handicapped children. Each handi-
the States and their localities.
capped child in the State aged three to five who
is counted as served will generate a special $300
Private Settings
entitlement. It should be noted that this incen-
tive entitlement goes to the State education
Children in private elementary and secondary
agency and must be used by the SEA to provide
schools may receive assistance for their special
preschool services. Additionally, this entitlement
education under this Act if:
35
such children are placed in or referred to
children within the regular education envi-
such schools by the State or local educa-
ronment, and children who are not;
tion agency as a means of carrying out
the number of educational personnel em-
public policy;
ployed, by disability category;
an individualized education program, as
number of children receiving special educa-
required by this Act, is maintained for such
tion instruction within residential settings,
children in private facilities;
and the number of children residing in
the special education is at no cost to the
institutions having a deinstitutionalized
parents;
education program.
the State education agency determines that
participating schools meet the standards
Legislative Format
that apply to State and local education
agencies;
P.L. 94-142 amends the existing Education of
the children served in such facilities are
the Handicapped Act and rewrites Part B of that
accorded all of the educational rights they
Act. In that context, it is important to observe
would have if served directly by public
that all of the important advances made in Part
agencies.
B through P.L. 93-380 (Education Amendments
of 1974) are retained in P.L. 94-142, and in
State Administration
many instances, are considerably improved
upon.
The State education agency is permitted to re-
serve to itself from the total allotment to the
State under this Act-in any given year-five per-
Impact
cent or $200,000, whichever is greater, to sup-
port its administrative responsibilities.
P.L. 94-142 provides for an annual evaluation
of the effectiveness of this legislation toward
Data
assistance in the achievement of a free, appro-
priate public education for all of the Nation's
The U.S. Commissioner of Education,
handicapped children.
through the National Center for Educational
Statistics, is required to provide to the Congress
Lifetime
and the public at least annually-and is required
to update annually-vital data on the educa-
P.L. 94-142 establishes a permanent authori-
tional status of the Nation's handicapped chil-
zation with no expiration date.
dren, such as:
children served and unserved within each
Prepared by The Council for Exceptional Children, Reston,
disability;
Virginia
APPENDIX B
METHODS OF STATE FISCAL SUPPORT
Several methods of funding have been used by
Unit basis. Some states reimburse a fixed sum
states to assist local educational agencies in
on a unit basis whereby the unit is defined as a
financing programs and services for exceptional
set number of children assigned to a special
children: (a) unit basis, (b) weighted formula,
class. Districts will certify the number of
(c) percentage reimbursement, (d) reimburse-
students enrolled in special classes. A unit of
ment for personnel, (e) straight sum reimburse-
funds may also be allocated for administration
ment, and (f) excess cost formula (Thomas 1973a).
on the basis of one unit for a set number of
36
classroom units. Units may also be apportioned
some districts the allocation will be too large
for ancillary services.
and in others it will not offset expenditures.
The growth of units for particular special
There is also great variability in each child's need
programs have been limited in the past to a
within each category of exceptionality, generally
certain percentage annually, which inhibits the
associated with the severity of condition
development of new exceptional child programs.
Percentage reimbursement. A state may elect
This has promoted the development of special
to allocate funds to districts using the per-
classes and has made resource room programs or
centage reimbursement pattern. If it does, it will
special assistance in the regular classroom ex-
reimburse a set percentage of all costs incurred
tremely difficult to reimburse. Other problems
in providing special education programs. As-
have been encountered in using the unit system
suming that all costs may be accounted for, it
(Thomas, 1973a):
overcomes some of the programing problems
encountered in the previous methods. However,
1. Maximization of class size to decrease per
several drawbacks have been noted.
pupil cost.
Since per pupil program costs vary, it will be
2. Inability of small school districts to gener-
less expensive to educate a child in one cate-
ate enough special education classroom units to
gorical program by using one delivery system
qualify for units for classroom ancillary services
than it will be using another. Thus, if the
and administration.
percentage that is reimbursed is low, a school
3. Nonreimbursement of higher costs during
district may still find its outlay in certain
the first year of a program.
programs excessive. This will lead to inappro-
4. Lack of funding in most states for costs
priate placements. From a state level viewpoint,
incurred in mainstreaming.
without a per pupil expenditure cap, it would
5. Inappropriate placement of children in a
appear that the total allocated state dollars
program with a lower per pupil expenditure
could be unlimited, However, the level of state
when units are allocated for differing class size
appropriations necessarily sets a limit, and those
on the basis of a child's disability.
funds are prorated on the basis of the percentage
6. Same reimbursement for all programs re-
reimbursement formula.
gardless of cost and/or quality.
Reimbursement for personnel. In this proce-
dure, a set amount of money may be allocated
Some of these problems may be overcome by
to offset the costs of special education teachers,
the establishment of statutory limits on class
administrators and supervisors, pupil personnel
size or by a gurantee to each district of at least
workers, and other professional and noncertified
one classroom unit for each category of excep-
support staff. A reimbursement program for
tionality or of a unit to be shared with another
personnel alone does not recognize all direct and
district. Districts may also share ancillary
indirect costs in special education, although it is
service, administrative, and supervisory units.
conceded that personnel costs represent the
The dollar amount allocated with new units
single most critical factor in financing. The
could be greater for the first year only.
outlook for mainstreaming using this method of
Weighted formula. A state may elect to fund
financing [is not] optimistic, since mainstream-
special education programs by using a system of
ing requires the presence of the exceptional
weights, with the per pupil expenditure of the
child in the regular education program to the
least expensive school program (regular elemen-
extent appropriate and those costs are not paid
tary programs) serving as a base of 1. The regular
by the state when a child is counted either as an
per pupil expenditure multiplied by the weight
exceptional or normal child. Without class size
for each category of program
equals the
limitations, local educational agencies may be
amounts of funds received per child. This
encouraged to maximize class size to decrease
method conceptually allows for the full cost of
per pupil expenditures.
special programs in the general state aid formula.
Straight sum reimbursement. This form of
A problem arises with the use of a weighted
reimbursement is simply a set amount of money,
system when average state costs serve as the
which may vary according to the exceptional
basis for the development of cost indices, rather
condition, allocated per exceptional child served
than an individual cost index for each district. In
in each district. It has an advantage for local
37
education agencies over the unit pattern since no
between districts. Standardization between dis-
set minimum number of served children is
tricts requires a common program cost and
required before state monies are distributed.
element format and accounting procedures nec-
Straight sum reimbursements often have little
essary to calculate excess cost. Of special con-
relationship to realistic program costs. As with
cern must be the problem of separating out the
other patterns, there is a tendency to label
cost of educating exceptional children provided
children for fiscal advantage and maximize the
in mainstreamed settings, where exceptional
size of classes.
children spend part or full time in regular classes
Excess cost pattern. The excess cost pattern
with supplementary services provided in those
of funding special education exists in several
settings. Also of concern is the allocation or
states and is being considered by a number of
proration of indirect costs.
others. Excess cost may be defined as the
If state regulations contain imprecise defini-
amount by which the per pupil expenditure for
tions of exceptional conditions, there will be
exceptional children exceeds the per pupil ex-
great variability between districts in the manner
penditure for all other children.
of determining a child's eligibility for special
The total amount to be reimbursed would be
education services. This will lead to the improper
that difference multiplied by the number of
labeling of children and a financial advantage or
exceptional children. Depending on the level of
disadvantage for some districts.
funding, excess cost may be completely reim-
The reimbursement of excess cost has been
bursed, reimbursed up to a dollar amount
viewed as a method whereby the state fully
ceiling, or reimbursed on a percentage or pro-
funds extra instructional costs of special educa-
rated basis. When the state is willing to appro-
tion programs where the pupil, teacher, or size
priate sufficient funds to cover all excess costs,
of the instructional group are units for deter-
theoretically the district is encouraged to make
mining excess cost. Excess cost could be funded
the best placement for the child because doing
by basing it on (a) state guidelines to determine
SO causes no extra financial burden. Prohibitive
actual allowances, (b) average excess costs of the
costs do not becomes a major factor in deterring
preceding year in a sample of exemplary dis-
a child from receiving the full range of services.
tricts, or (c) state guaranteed (foundation) level
When the payment, however, is a percentage of
of support for the current year.
excess costs, the school districts encounter the
same problem as that discussed under the
Note: From "Financing the education of exceptional children"
percentage approach. (Thomas, 1973a, p.477)
by J. J. Marinelli in Public policy and the education of
exceptional children edited by F. J. Weintraub, A.
Difficulty is encountered in determining just
Abeson, J. Ballard, and M. L. LaVor. Copyright 1976 by
what is excess cost and ensuring comparability
The Council for Exceptional Children.
38
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
COMMUNICATION: TECHNIQUES,
SYSTEMS, DEVICES
Awareness Paper Prepared By
Dr. Patricia A. Scherer
Northwestern University
Evanston, Illinois
Pub. WHC -- 16
TABLE OF CONTENTS
Page
Definition
1
Mass Media
2
Television
2
Radio
4
Films and Specialized Materials
4
Newspapers, Magazines and Journals
5
Telecommunication Systems
5
Telephones
5
Teletype Systems
5
Communication Systems In Public Gathering Places
6
Public Buildings
6
Public Transportation
7
Graphics
8
Pictographs
8
Books, Advertisements and Other Printed Materials
8
Interpersonal Communication
9
The Family
9
Service Providers
9
Readers for Blind Persons
10
Interpreters for Deaf Persons
10
Legal Interpreters
10
Sensory Aids For Handicapped Persons
11
Aids for Visually Impaired Persons
11
Aids for Partially Sighted Persons
11
Aids for Blind Persons
12
Aids for Hearing Impaired Persons
13
Aids for Deaf-Blind Persons
13
Aids for Other Physically Handicapped Persons
13
Conclusion
14
Bibliography
14
This Awareness Paper was prepared by a subject-matter expert to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This paper was not intended to be all-inclusive, but
was designed to stimulate discussions.
DEFINITION
must be able to communicate effectively with
his environment (i.e., he must send information
Communication is an act of transmission
to and receive information from the environ-
whereby ideas, information, thoughts and feel-
ment). Thus, when communication is blocked,
ings are exchanged. It has frequently been
the eventual outcome is devastating in that
defined as one of the prime characteristics of the
human rights basic to the American heritage are
human being. It is the method through which
denied and the individual is prevented from
individuals interact with one another in order
attaining his full potential, Communication bar-
that they might adapt to their environment and
riers can, therefore, be defined as any object or
achieve successful independent living. Human
situation which restricts the free flow of com-
communication can be defined as a complex
munication and, thereby, denies the handi-
series of acts which encompasses the ability to
capped individual full participation in society.
receive, process and send an arbitrarily estab-
Most handicapped people experience com-
lished code.
munication barriers in one form or another. For
There are a variety of kinds of communica-
example, attitudes within society are often
tion, all of which are designed to assist individ-
unfavorable to the handicapped individual.
uals in the educational and socialization process.
When negative attitudes are communicated to
This paper will deal with three major types of
handicapped persons they hinder the develop-
communication systems: mass communication,
ment of positive feelings of self-worth. Society
social communciation and electronic and/or
maintains these negative attitudes toward differ-
mechanical commication.
ences, partly because the communication sys-
Mass communication can be viewed as a
tems available to us have not been used effec-
medium for socio-political purposes. Journalism,
tively to change societal attitudes and behaviors.
radio, T.V. and movies can all be utilized to
Within our society most information is trans-
inform the public of local, national and inter-
mitted through visual or auditory channels.
national events; to influence individuals concern-
Therefore, individuals with sensory handicaps
ing specific political views; to mold images; and
are particularly burdened by severe communica-
to provide aesthetic experiences.
tion problems. Blind individuals are affected
Social communication is a more personal type
when the communication is exclusively of a
of communication between individuals and
visual nature. Mobility is severely restricted
among groups. It is through this type of com-
because orientation on transportation vehicles
munication that the child acquires the language
and on foot is maintained by visual cues (i.e.,
of his culture in order that he might learn to
street signs, building signs, bus signs, etc). Any
effectively manipulate his environment and lead
public information given only in visual form
a productive, independent adult life. Also
creates a communication barrier for the visually
achieved through this communication is the
impaired person and, thereby, reduces his ability
interaction between persons that permits sociali-
to function in an independent manner.
zation and the satisfaction of emotional needs
The deaf individual frequently lives in an
common to all people.
isolation often not penetrated by society even
In this paper, communication through elec-
for purposes of communicating life saving mes-
tronic or mechanical modes is viewed as a means
sages. Interpersonal relationships are often
of facilitating or enhancing social communication
severely restricted, resulting in impoverished
or mass communication. In this category are
language which in turn prevents the develop-
such devices as the telephone, teletype, sensory
ment of adequate educational, social, recrea-
aids, etc.
tional, cultural and vocational skills.
Within our society today, a handicapped
Handicaps other than sensory deprivation also
individual frequently finds himself unable to
impose communication barriers. The individual
participate fully in the culture in which he lives.
with severe reading disabilities who is often at a
A communication deficit is often one of the
disadvantage in following the complex printed
major causes of his inability to obtain the
directions in many public facilities; the physi-
benefits and rights taken for granted by most
cally handicapped person in a wheelchair who
non-handicapped individuals.
cannot have access to public gatherings and is,
In order to fully participate in society or to
therefore, denied the communication that
exercise one's rights as a citizen, an individual
occurs in such meetings; the child with severe
1
cerebral palsy who cannot acquire intelligible
ing member of society. However, these attempts
speech to communicate his basic needs; these are
have lacked coordination and have been far too
but a few of the common examples of the
infrequent. A few public T.V. shows such as Mr.
communication problems which exist in our
Rogers' Neighborhood and Sesame Street have
society today.
made specific efforts to incorporate handi-
Communication barriers are multiple and can
capped persons into their format. Capitol Cities
be illustrated schematically as indicated in Fig-
Television Production Studios has become inter-
ure 1.
ested in raising the consciousness level of the
public concerning handicapping conditions by
MASS MEDIA
producing shows which present symptoms of
The mass media (i.e., radio, television, films,
disorders and a possible course of action for
magazines and newspapers) has two major re-
obtaining professional assistance when a handi-
sponsibilities to uphold in meeting the needs of
capping condition is suspected. These shows
handicapped individuals in our society. First, it
have been well received and Capitol Cities
is critically important that the mass media
received a national award from the Association
accept the challenge to enhance public aware-
for Children with Learning Disabilities for mak-
ness concerning the actual effects of handi-
ing available to the public a movie version of its
capping conditions on individuals. Frequently,
hour long show on learning disabilities entitled,
the handicapped person is portrayed by the mass
"Why Can't I Learn?"
media as an object of pity or, at the other
A concerted effort by the mass media is
extreme, as an individual who has totally over-
needed to change the general public's attitude
come his problems. Neither of these portrayals
toward disabled persons to the extent that
provides an accurate picture of the day-to-day
behavior is changed and prejudice and bias is
reduced.
accomplishments or day-to-day problems faced
by the handicapped person and, therefore, does
Of all handicapped individuals, hearing im-
little to assist the general public in achieving an
paired persons are most severely affected by
understanding and acceptance of all handi-
current practices in television. The severe com-
capped individuals. Therefore, it is important
munication deficit they experience precludes
that the information provided to the public be
them from understanding fully the audio or
visual track of television. This is because the
accurate and realistic in order that biases and
visual track does not communicate the same
prejudices that grow out of ignorance can be
effectively reduced.
message as the audio track. The program format
Secondly, the mass media must provide an
usually relies on the audio track to interpret the
equality of service for all its constituency. Most
visual track, thereby preventing the hearing
individuals in our society today have at their
impaired person from receiving information
fingertips a variety of ways to inform themselves
from the television or being entertained in a
about important events, both foreign and do-
manner similar to that of a hearing person. Some
mestic, to enhance their knowledge about a
experimentation has occurred throughout the
specific field of interest, or to simply relax and
country in an attempt to provide some news
be entertained. The question must be raised as
broadcasts to the hearing impaired community.
In some instances, these efforts have succeeded
to how effectively these same services reach the
handicapped individual. To exclude the individ-
in providing an interpreter during the news
broadcasts while others have utilized the tech-
ual from these benefits severely impacts on the
nique of written captions. One of the most
educational and socialization process, thereby
reducing the individual's overall ability to func-
successful of these efforts has been the caption-
ing of the ABC Evening News when it is
tion in society.
rebroadcast on the Public Broadcasting Service.
When the individual is unable to receive
Television
information from T.V. or radio there are life
The television industry, in the past few years,
saving consequences in that emergency warnings
has made increasingly frequent attempts to
are not communicated. Currently, the Federal
inform the public about the effects of handi-
Communication Commission (FCC) has pro-
capping conditions and to promote a positive
posed two major rulings to assist in the resolu-
image of the handicapped person as a contribut-
tion of this problem. In response to a petition
2
COMMUNICATION SYSTEMS
OF SOCIETY
Through
INTERPERSONAL
MASS MEDIA
TELECOMMUNICATIONS
GRAPHICS
COMMUNICATION
SENSORY AIDS
Television
Telephones
Signs
Family
Radio
Hearing Aids
Newspapers
Teletypes
Pictographs
Significant Others
Speech Aids
Magazines
Journals
Pictures Phones
Books
Service Providers
Reading Aids
Advertisements
Communication Aids
For
INDIVIDUAL
HANDICAPPED
LIVING FACILITIES
PUBLIC BUILDINGS
PUBLIC STREETS
COMMUNICATION
INDIVIDUALS
Residential Setting
Local, State and Federal
Transportation Equipment
Handicapped Persons
Visually Impaired
Public Housing
Government Buildings
and Facilities
Through Readers,
Hearing Impaired
Senior Citizen Center
Churches, Hospitals,
Traffic Control
Interpreters, etc.
Other Physically
Hospitals
Office Buildings,
Street Signs
Handicapped
Private Homes
Schools, Stores,
Mentally Handicapped
Hotels
Hotels, Motels
Motels
To
Preserve Life, Educate, Inform,
Provide Cultural Information,
Provide pleasure and entertainment,
Enhance independence, improve vocational
and other opportunities
Figure 1
filed in 1975, the FCC proposed the following
materials of special interest for Black and
ruling:
Spanish speaking disabled individuals; etc. In
A. All emergency information must be trans-
this way, physically handicapped individuals
mitted aurally and visually; and
receive local, state and national information at
B. All emergency transmissions must be con-
the same time as their non-handicapped peers
cluded with the request, "If you have hearing
receive it in written form.
impaired or blind friends or neighbors, please
The equipment includes a special receiver
pass this information on to them."
which is loaned free of charge to those who are
The second proposed ruling is related to the
eligible. The material is broadcast by trained
addition of captions through a specialized de-
professionals, including some who are handi-
coding device attached to the individual's TV
capped persons. More radio stations throughout
set. This proposed ruling submitted to the FCC
the country need to become involved in similar
by the Public Broadcasting Service requests that
programs in order that all citizens can have equal
"line 21 of the vertical blanking interval of the
access to information.
television broadcast signal be reserved for pro-
gram captioning information for the deaf.' This
Films and Specialized Materials
system would permit hearing impaired persons
with the decoding device to receive captions
Films are consistently used by the American
without disturbance to the general viewing
public for both educational and recreational
public. It is estimated that a station could
purposes. Frequently, handicapped individuals
produce captions for their programs at an initial
cannot profit from these films due to inappro-
investment of $25,000 to $50,000 and at a
priateness of the presentation format or, as in
reasonable operating cost. The decoder device, if
the case of hearing impaired persons, an inability
mass produced commercially, could be produced
to receive the information from the audio track
for as low as $30.00 to $50.00.
of the film. Several years ago in an attempt to
It is critically important that these proposed
meet these needs, the Bureau of Education of
rulings be implemented and that economic
the Handicapped (HEW) established a special
barriers be reduced as quickly as possible.
office which originally was designed to provide
Television, properly utilized, could assist in
educational and entertainment films for deaf
reducing the severe language and academic
individuals. However, today the office is known
deficit of many hearing impaired individuals.
as "Media Services for the Handicapped" and
For blind persons, a commercially available
serves all types of handicapping conditions. This
"television" set has been developed which has
office works through a group of special centers
both the audio for television channels and radio
which are located throughout the country and
stations, with Braille dials for ease of use. Since
are designated to serve specific handicaps. These
the video receiver has been removed, the set can
centers identify commercially produced mate-
be sold below the cost of a comparable tele-
rials appropriate for the handicapping condition,
vision set.
develop models of needed educational materials,
and distribute information to sources in need of
Radio
the service. In addition, captioned educational
and entertainment films for handicapped chil-
Radio is also a form of mass media which can
dren and adults are distributed from a strategic-
be used effectively to benefit handicapped peo-
ally located film library on a loan, no-cost basis.
ple. Although such uses and adaptations have
One of the major goals of this service is to bring
just begun, first attempts suggest exciting possi-
to handicapped people enriched cultural and
bilities for the future. For example, the Washing-
educational experiences.
ton Ear, Inc. is a closed circuit radio service for
There is a variety of needs and problems
blind and other physically handicapped persons,
associated with the production of specialized
nursing home residents and elderly home-bound
materials and films. Currently, assessments indi-
individuals.
cate needs for materials for all types of handi-
This service, located in the Washington,
capping conditions in the areas of career educa-
D.C.-Arlington, Virginia area, broadcasts items
tion, sex education and drug education. Some of
such as portions of the daily newspaper; infor-
the special problems of production are related to
mation regarding hobbies, sports and shopping;
ways in which the information is provided. For
4
example, mentally retarded children or children
buttons. (Public and private phones can be
with severe language deficits need attention
equipped with devices that do not require
given to developing ways to simplify the lan-
dialing or pushing buttons, but can be
guage on the audio track. In preparing captioned
controlled by breath.)
films, research is needed also to investigate the
D. Inaccessibility to the phone because it is
most effective way for accurately telescoping
an aural system which cannot be used
the language of the sound track into a caption.
effectively by many hearing impaired indi-
viduals.
Newspapers, Magazines and Journals
Although in many areas of the country there
Not enough has been accomplished in making
are additional charges for the handicapped per-
the information in our newspapers, magazines
son, in a recent issue of Telebrief,* published by.
and journals available to handicapped persons
American Telephone and Telegraph Company, it
with special needs. Over 40 periodicals in the
stated that handicapped persons should contact
nation are transferred into Braille and, as was
their telephone company service representative
previously stated, the radio has been used as a
to seek details on: how to obtain a dial rate for
means of giving the news auditorially to blind
operator assisted calls. (The same article also
persons. But for those persons whose reading
presented a newly developed telephone for
level precludes the understanding of the mate-
severely physically handicapped persons which
rial in its original form, little is done to adapt
activates an automatic dialer by a breath-
the information to make it available in a
operated switch and utilizes a hands-free
modified and, therefore, usable form.
speakerphone.)
A problem that has arisen in regard to
TELECOMMUNICATION SYSTEMS
telephone usage by the hard of hearing popula-
tion is that of compatibility of the telephone
Telephones
handset with teletypewriters (TTYs) and the
telephone switch of hearing aids. Within the past
In our society today, the telephone is proba-
few years most of the telephone manufacturers
bly one of the most vital communication tools
have produced a more efficient and economical
available. Business, pleasure, and emergency situa-
handset which is not compatible with hearing
tions are all conducted on a daily basis through
aids and TTYs. This problem has been brought
this system. However, not all segments of the
to the attention of the telephone companies
population have equal access to the telephone
who have, in some instances, resolved it.
because of varying handicapping conditions.
It is apparent that current technology can
Reasons for this unequal access can be summa-
provide telephone systems usable by all sectors
rized as follows:
of society. The desired goal is to convert this
knowledge into equipment that can be utilized
A. Inaccessibility due to the height at which
in all public buildings and can be available in
most public phones are placed. Individuals
private homes on a low cost basis.
in wheelchairs or those very short in
stature cannot reach the phones.
Teletype Systems
B. Economic discrimination which impacts
on the blind individual's use of the tele-
In 1964, Robert Weitbrecht, a deaf physicist,
phone. Because long distance calls are
developed a telephone coupler which permitted
more expensive when the operator is
the teletypewriter (TTY) to be used as a
involved and because many communities
communication system for deaf people and
charge for the services of Directory Assist-
those who have lost their speech through illness
ance, the blind person finds himself pay-
or accident. When the TTY is connected to this
ing a higher cost for the use of the
acoustic coupler it sends coded electrical im-
telephone than does his non-handicapped
pulses, which are converted by the coupler to a
peer.
series of tone bursts of specific frequency over
C. Inaccessibility for severely physically
the telephone lines. This permits two individuals
handicapped people because of the inabil-
ity to reach the operator via dial or push
*This awareness paper was prepared in April 1976.
5
with TTY systems to communicate by typing a
This standard was interpreted to apply to all
message to each other.
buildings used by the public except for private
In the fall of 1975, a survey revealed 5,050
housing and has been interpreted to imply that
TTYs currently in operation. The current Inter-
to be functional the communication systems
national Teletype Directory listed the following
must also be accessible. Currently, new stand-
places in the U.S. as having TTYs available: 51
ards are being formulated which specifically
telephone answering services; 15 police depart-
address the problem of telephone usage within a
ments; 44 churches; 47 community service
public building. Issues related to the height of a
organizations; 69 schools and colleges; 22 voca-
telephone, the compatability of the phone with
tional rehabilitation units; a few emergency,
currently sold hearing aids, and the use of
news and weather services; some private resi-
volume control devices are being considered as
dences; and Sears and Wanamakers stores in
the accessibility standard is updated. However,
Philadelphia.
the problems of phone usage for deaf or severely
There are a variety of types of teletype
physically handicapped persons have not been
equipment, ranging from large units for home or
dealt with.
office to small portable units that can be used
Problems relating to the costs involved are
when away from home. The MCM is one such
serious and must be addressed. For example,
portable system. In this system the letters are
individuals using the TTY service for long dis-
presented electronically on a small screen. The
tance calls will pay at least double the rate for
Magsat is similar in that it also presents letters
their call due to the length of time it takes to
on a screen, while the standard TTY supplies the
type rather than speak the message. The cost of
individual with a typed copy which he can
installing a TTY in a home is at least $250.00.
retain. Costs for the various TTY systems range
Many deaf people who could afford the monthly
from approximately $250.00 to $750.00.
cost of a phone bill cannot pay the initial TTY
Currently, some progress is being made in
cost-a cost not incurred by the non-
providing the teletype systems in a variety of
handicapped population. No way has yet been
settings. For example, in June 1975, a bill was
derived for use of the portable TTY for phone
introduced in the Maryland House of Rep-
booth long distance calls since charges are given
resentatives which, if enacted, would have pro-
by the operator who does not have access to a
vided teletype machines in central locations in
TTY and, therefore, cannot communicate costs
agencies of State and local government and in
to the deaf person on the other end of the line.
other public facilities equipped with these
machines (within a toll free telephone district).
COMMUNICATION SYSTEMS IN
It was further provided that teletype machines
PUBLIC GATHERING PLACES
be installed, without cost, in the homes of deaf
persons whose gross income is less than $5,000 a
Public Buildings
year. These machines would be connected elec-
tronically to provide a means of communication
The communication problems (other than
between deaf persons and the offices of major
those just discussed) which exist in public
State agencies. This bill was passed by the
buildings are basically two-fold in nature. The
Maryland House only, and will have to be
first problem is related to directional signs in
reintroduced in the next session of the legisla-
public buildings, while the second relates to the
ture.
warning system utilized and its ability to notify
Legislation which pertains to architectural
all persons in the building of impending danger.
barriers is often cited as a vehicle by which
Many handicapped individuals experience
accessibility to communication systems can be
problems in attempting to use the signage
attained. The current accessibility standard,
system currently utilized in many public build-
ANSI A117.1 (American National Standards
ings. Non-English speaking persons; blind, deaf
Institute) states: "This standard is intended to
and other physically handicapped people;
make all buildings and facilities used by the
mentally retarded individuals; and those persons
public accessible to, and functional for, the
suffering from severe reading deficits, often
physically handicapped, to, through, and within
experience difficulties in reading the signs. For
their doors, without loss of function, space, or
example, individuals with physically handicap-
facility where the general public is concerned."
ping conditions which necessitate the use of a
6
wheelchair frequently cannot see signs because
are also being addressed, more attention is
of their placement. Individuals with blindness or
needed. New standards will suggest that phones
deafness cannot receive the information when it
should be no higher than 54 inches. However, it
is given either exclusively by the auditory or
was decided that volume controls on phones in
visual channel. In addition, a blind person
public places were not helpful to hard of hearing
cannot determine the floor at which the elevator
persons, and these devices were, therefore, elimi-
has stopped or be alerted to possible dangers in
nated from consideration. Also, no specific
the building structure. A deaf person cannot be
emphasis was given to the communication needs
paged in a public building or cannot participate
of severely physically handicapped, blind or deaf
in a tour which is spoken by a tour guide or
persons. Since the availability and accessibility
given by audio cassette.
to communication in public buildings continues
The problem of emergency warning systems
to be a problem, it is apparent that new
as they relate to physical safety is critical. Most
legislation and/or enforcement of existing legis-
current warning systems are auditory in nature
lation needs to be considered.
and do not serve the hearing impaired person.
Many schools for the deaf do not provide visual
Public Transportation
alarms and, therefore, jeopardize the lives of
their pupils on a daily basis. TTYs are not
Communication is an integral part of trans-
required in public buildings, leaving the deaf
portation. Time schedules, street signs, bus and
person with no way in which he could report an
train stops, paging systems, and announcements
emergency to the appropriate agency.
of changes of schedules can provide problems
Individuals who have mobility problems
for the handicapped person.
should also have information concerning accessi-
The independent mobility of a blind person is
ble escape procedures in public buildings and
greatly reduced when he cannot identify various
facilities. This information should be printed in
stops made by local transportation vehicles or
a manner readily understood by all handicapped
when he is unable to identify streets or the
persons.
various buildings he is passing while on foot. He
The lack of appropriate warning communica-
cannot read signs announcing bus stops and
tion systems is one of the most critical needs in
information about routes and bus numbers.
the United States today. It is a serious condem-
However, technological knowledge, if properly
nation of this society that its priorities have
utilized, would enable the transmission of this
permitted large numbers of its citizens to jeop-
information, commonly received through the
ardize their lives daily.
visual channel, to be received auditorially.
The Department of Housing and Urban Devel-
Many of the signs and messages used in
opment is addressing some of these problems,
conjunction with public transportation systems
through the award of a grant to update the
are excessively complex, utilizing small print
accessibility standard written by the American
quite difficult to see. Such signs and schedules
National Standards Institute. The Standard re-
should utilize large print and clearly contrasting
lates to the accessibility and usability of public
colors and should be simplified for the benefit
buildings for handicapped individuals. Problems
of those who experience language deficits and
related to the location of signs, the provision of
reading problems.
information for blind persons at the elevator
Traffic control is another area of concern,
area, and indicating to blind persons danger
particularly for the blind individual. In a few
areas by utilizing a rough textured surface, are
towns in the United States the change of the
all being considered by the revisers of the
traffic light is accompanied by a ringing bell
standard. They are also discussing the possibility
with a different ring for each color. In this way
of placing some seats with volume controls in
the blind person knows when the light is
public auditoriums for use by persons who are
changing and what color it is.
hard of hearing; vibratory alarms in pillows at
Information provided exclusively in the audi-
hotels, motels, etc.; flashing signals and auditory
tory channel such as paging systems, public
alarms in corridors of public buildings and in
address systems in stations and terminals, and on
offices which employ handicapped individuals.
the vehicle itself should also be given in visual
Although the problems of telephone usage
form. Many deaf people have described incidents
and communication systems in public buildings
in which the plane they were riding landed in an
7
airport different from the one scheduled for the
B. Selection of the most meaningful sym-
landing. The other passengers had been alerted
bol, taking into account the universality
to the change of plans through the public
of the symbol;
address system. The deaf person leaves the plane
C. Development of a plan for converting
thinking he has landed at his point of destina-
present word signs to symbol signs; and
tion only to find he is in a strange city, for
D. Development of a nationwide communica-
unknown reasons. Since communication is his
tion program to educate the public con-
major problem, he will find it exceptionally
cerning the use of the pictorial signs.
difficult to find out why he is in the wrong city
and to obtain the information necessary to make
In developing any sign for public use it is
appropriate adaptations to his problems. Since
important to consider the factors of size, loca-
there is no telephone communication system he
tion, color and lettering. The size must be large
can use, his family and friends will remain
enough to be clearly visible and the location
uninformed about his whereabouts and if they,
such that it is easily seen by all, regardless of the
too, are deaf, they will be unable to contact
level from which the sign is viewed, in sufficient
their airport to find out what happened to the
time for the individual to respond appropriately.
flight.
Color of foreground and background must be
This society has an obligation to its members
sharply contrasting and lettering must be large
to prevent its citizens from an existence based
and clear enough for easy readability.
on fear, which cannot be eliminated, because of
Color coding in city public transportation
inadequate communication systems.
systems might be a more effective means of
coding transportation routes which currently use
GRAPHICS
numerical, word or letter symbol systems. A
color coded system is easily observed and would
The preparation of appropriate graphics is
communicate to larger numbers of our society.
important to the development of a quality
communication system. This relates to the pro-
Books, Advertisements and Other
duction of signs for public buildings, streets,
Printed Materials
highways, transportation centers, and other pub-
lic gathering places.
The first issue is the need to include por-
trayals of handicapped persons in printed mate-
Pictographs
rials. This will help to foster acceptance of
In many European countries the sign system
disabled individuals and develop a better under-
is largely based on pictorial symbols. These can
standing of their abilities and problems. The
be found in streets, highways, public buildings,
second issue relating to printed materials is the
transportation centers and are used to symbolize
need for development of literature designed
concepts such as danger, curve, railroad crossing,
specifically for some handicapped persons.
exit, entrance, restrooms, telephone stations,
Although educational publishers and commer-
etc. These symbols are used because they com-
cial advertisers have made a concerted effort to
municate effectively to the vast majority of the
include ethnic minorities in their publications,
population, and do not exclude those who, for a
little has been accomplished to include handi-
variety of reasons, cannot read the language of
capped persons in publications. For example,
the region in which they reside.
children's readers rarely depict a child with a
Although over the past few years there has
hearing aid or a child using a wheelchair as part
been an increase in the use of pictorial signs in
of a group scene in places of public gathering,
the United States, the custom is far from
nor do commercial ads usually incorporate
universal. Many factors must be considered
handicapped persons in their format.
before a symbol is adapted for public use.
Equally important is the development of
Therefore, a well developed and coordinated plan
printed materials produced according to the
is needed which would address the following
special needs and related to the problems of the
needs on a nationwide basis:
handicapped person (i.e., large type or Braille
for the visually impaired, simplified vocabulary
A. Selection of those signs which can be
and language structure for those with severe
symbolized pictorially;
language deficits, auditory tape cassettes for
8
those with visual problems or reading disabili-
communication frequently occurs because the
ties, and pictorial materials for those who do not
parents have received inadequate education at
develop verbal language skills). Appropriate ma-
the time of diagnosis concerning the impact of
terials need to be produced which deal with the
the handicap upon their child. Parents need
special needs of handicapped persons. For exam-
early counseling and education to assist them in
ple, each city should have available, perhaps
learning to accept their feelings and in acquiring
through its Chamber of Commerce, raised line
techniques for helping their children cope with
maps for use by the blind members of the
the effects of the handicap. This includes the
community. Such materials are needed to assist
development of skill in communication with
the individual in coping with his environment.
their child that is consistent with the child's
In order that commercial firms' need for profit
capacity. It is, therefore, imperative that educa-
will not preclude the development of these mate-
tional and other agencies assume this responsibil-
rials, ways must be sought to eliminate current
ity for providing information and training.
economic barriers to the production of such
Individuals in adult life may lose their capac-
materials.
ity for communication. This can result from a
The accessibility of appropriate printed mate-
stroke, a laryngectomy, hearing loss, blindness,
rials is also an issue of concern. Many books are
etc. When such trauma occurs, the family is an
not available in Braille and the blind person's
important focal point of strength for the individ-
breadth of reading is limited accordingly. The
ual experiencing the problem. The family, how-
library system in England provides a service
ever, is also affected by this trauma and often
which attempts to alleviate this problem. A
has no means for coping. Services, therefore,
person who is blind can call the library for the
need to be provided for disabled persons and
reading of any book he desires. Utilizing the
their families. These services should include
telephone connection, a recording of the book
counseling, education and the development of
requested will then be played for the blind
alternative communication skills.
individual, giving him access to many printed
materials. The system provides the blind person
Service Providers
with the flexibility to stop or start listening,
from day to day, at anypoint he desires.
It is equally important that providers of
Although some good services have been initiated
services to handicapped persons have highly
in the U.S., more needs to be done to insure
developed skills of communication. When a
equal accessibility to the printed word for all
disabled individual is unable to understand the
handicapped persons.
communication system being utilized, many
situations arise which create a hazard to good
INTERPERSONAL COMMUNICATION
physical and mental health. A doctor or nurse
communicating instructions about medication or
Many individuals within our society suffer
discussing the treatment for a specific illness is
from communication problems so severe that it
but one example of the critical communication
precludes their interaction with a variety of
problems faced routinely by many handicapped
persons within their community. They cannot
individuals. Psychological, educational, medical
interact effectively with parents, teachers, com-
and other treatment cannot occur in an effective
munity workers, or representatives of public
manner if communication is not clearly estab-
agencies. Nor can they protect themselves by
lished between the participating parties.
having adequate communication with legal,
Many children's lives have been seriously
educational, medical and other professionals.
affected by misdiagnosis because, during individ-
ual testing, the evaluator could not communi-
The Family
cate adequately with the child. Children with
severe emotional disturbance, which has resulted
The lack of communication within the family
in communication deficits, are often misplaced
structure is the most serious of all deprivations
and frequently receive inappropriate treatment
that some handicapped individuals face. Without
because the staff is unskilled in nonverbal forms
interaction with parents, ego development,
of communication. Many mentally retarded and
social and educational development, and cogni-
severely physically handicapped persons must
tive growth will be seriously limited. A lack of
rely on communication systems other than
9
verbal speech. It is, therefore, necessary that
greatly from person to person. Therefore, to
those individuals providing treatment be skilled
guarantee that the rights of these individuals are
in the specific communication system of the
protected, highly skilled interpreters are needed
handicapped person or that interpreters be
who can communicate with the deaf person, in
retained for that purpose. It is only in this
whatever mode he finds most effective.
manner that handicapped individuals can be
assured of their rights to appropriate treatment.
Legal Interpreters
A lack of interpersonal communication results
in frustrations which frequently lead to severe
Aspects of current legislation have addressed
emotional problems. Many individuals with deaf-
the use of interpreters in interactions with the
ness, severe multi-handicapping conditions pre-
police and in the courts.
cluding the acquisition of verbal language, and
The Sixth Amendment of the United States
non-English speaking disabled people suffer
Constitution guarantees the right of Federal
from this inability to communicate with indi-
criminal defendants to a confrontation of wit-
vidual members of society. In order that the
nesses against them and competent counsel. The
rights and privileges of citizenship can be pro-
Fourteenth Amendment secures these rights at
tected, the use of interpreters for deaf individ-
the State level. These rights apply to deaf
uals and readers for blind persons has been
individuals in at least two situations:
introduced as a partial solution to the problem.
A. The deaf defendant as he participates in
Readers for Blind Persons
settings where all other participants can
hear.
One of the ways in which the blind person
B. A hearing defendant participating in pro-
can reduce the impact of the inaccessibility of
ceedings where one or more witnesses are
the printed word is through the use of readers.
deaf.
Current legislation is pending which would
require Federal government agencies to provide
For example, in the first situation, a deaf
readers for blind persons and interpreters for
person may feel that his presence in the court-
deaf individuals who are Federal government
room is meaningless. He has no way of under-
employees.
standing the proceedings of the trial in which
There is, however, a lack of well-trained
he is a participant. The case of United States ex.
readers and no organized channel through which
rel. Negron v. New York (434 F. 2d 386, 388)
these individuals can render their services. There-
(2d Cir. 1970) ) in which the defendant knew
fore, the blind person must rely on the few
only Spanish but the entire court proceedings
volunteers who currently exist. It has been
were in English, has been used to point up the
suggested that a national registry of readers
need of the deaf person for a courtroom
similar to that of the Registry of Interpreters for
interpreter if he is to obtain a fair trial.
the Deaf might be an effective means of increas-
The Sixth and Fourteenth Amendments grant
ing availabilility and providing qualified, well-
a criminal defendant the right to confront the
trained readers.
witnesses testifying against him. If a defendant
The economic question regarding payment
cannot understand a witness, he is unable to
exists in most instances where readers are
indicate discrepancies or in any way counteract
required. Specific action is needed to guarantee
the testimony. The Sixth Amendment also
the rights of individuals to necessary reading
guarantees the right to counsel in any case where
services.
the crime is punishable by imprisonment. The
right to counsel can be interpreted to mean the
Interpreters for Deaf Persons
right to an attorney who understands all aspects
of the case well enough to build a defense.
Most individuals who suffer from early child-
Without communication there is no way in
hood deafness find many forms of communica-
which a client can share the events of the case
tion quite difficult. The degree to which these
with his attorney, thereby violating the essence
individuals acquire skills in understanding lip-
of the amendment's protection.
reading, in utilizing speech, in understanding and
In reviewing the current status of State
utilizing sign language and fingerspelling varies
statutes, it can be observed that thirty States
10
have enacted special statutes providing an inter-
technological advances currently being made in
preter for deaf persons in court situations. Four
other fields. This may be due in part to the small
States also require that the deaf person have
amounts of money allocated by the Federal
interpreting services when he is in initial police
Government for research related to the develop-
custody. Eight states have statutes requiring that
ment of sensory aids. When these monies are
deaf persons involved in administrative proceed-
compared to monies expended for other health
ings also have interpretive services.
related areas for research on an annual basis, the
following facts emerge:
SENSORY AIDS FOR
$220.00 spent per cancer patient
HANDICAPPED PERSONS
$ 76.00 per cardiovascular patient
$
1.25 per legally blind patient
In the United States over 10 million Ameri-
$
.50 per visually handicapped patient
cans are handicapped by serious impairment or
$
.41 per hearing impaired patient
total loss of their primary senses of vision and
(National Academy of Science, 1968)
audition. The results of these impairments often
manifest themselves in vocational, social and
cultural underachievement and create an un-
Aids for Visually Impaired Persons
necessary dependence on the part of the dis-
abled individual. Sensory aids are viewed as one
Sensory aids have been developed in an
way in which this dependency can be reduced
attempt to reduce the effects of the inability. to
and the quality of life can be improved.
read print and the mobility problem of the
It is estimated that 1.7 million persons have
visually impaired. Since this paper focuses on
severe visual impairments while 4.7 million
communication problems, attention will be
Americans have mild to moderate visual impair-
focused herein on sensory aids for reading.
ments. Of the severely visually impaired popula-
Work has been done to make the printed
tion, it is estimated that 400,000 have no useful
word more accessible to both the blind and
vision, 300,000 have only marginal vision and
partially sighted individual. The work for blind
950,000 have limited useful vision. (American
persons has concentrated on the rapid produc-
Foundation for the Blind). The incidence of
tion of Braille, the preparation of talking books
profound deafness is estimated at 400,000 while
(auditory cassettes) and the interpretation of the
the estimate of all levels of hearing loss is placed
printed word into codes other than Braille. Aids
at 8.5 million. Of these persons, 900,000 have
for partially sighted individuals have been basi-
losses sufficiently severe that they cannot hear
cally concerned with appropriate magnification.
words without a hearing aid. Approximately
500,000 people have severe visual impairment
Aids for Partially Sighted Persons
concommitant with hearing impairment and
another 21,000 persons are identified as deaf-
Aids for partially sighted individuals are fre-
blind. (Schein and Delk, 1972)
quently referred to as low vision aids. Figure 2
However, to date, this population has profited
indicates the types of aids that are currently
very little from the remarkable scientific and
available.
LOW VISION AIDS
OPTICAL
NONOPTICAL
Lens
Electro-optical
Large Print
Miscellaneous
Spectacles
Illuminated Magnifiers
Books
Reading Stands
Contact Lenses
Projection Magnifiers
Periodicals
Reading and Writing
Telescopic Lenses
Closed Circuit Television
Games
Guides
Clip-on Lenses
Occupational Aids
High Intensity Lamps
Loupes
Daily Living Aids
Hand Held Magnifiers
Stand Magnifiers
Hand Held Telescopes
(American Foundation for the Blind)
Figure 2. Low Vision Aids
11
These devices are all based on the principle of
forward speed to play back page numbers on the
magnification and, therefore, attempt to make
normal voice track.)
the print visually accessible to the viewer. As can
The production of Braille books is centralized
be observed, they range from the very simple to
in the Library of Congress under the Books for
the highly developed technological systems such
the Blind program which subsidizes Braille and
as the closed circuit T.V. reading system. Al-
recorded books produced by the American
though more needs to be accomplished to
Federation of the Blind and the American
improve the aids and reduce the costs, one of
Printing House for the Blind. In addition, the
the most serious problems today is in dissemina-
Library of Congress trains and certifies Braille
tion of information to and training of the service
translators who provide Braille transcription
providers. The problems of individuals who have
services throughout the country on a voluntary
visual or hearing impairments are frequently
basis. Although much has been done to make
overlooked and the extent of the impact of their
Brailled readers available to blind persons, the
problem on daily living is frequently underesti-
delivery of services is not as fast and comprehen-
mated. Therefore, there are large numbers of
sive as is needed. The lack of Braille books can be
partially sighted persons who do not know they
illustrated by the fact that in 1964, in the
can be helped and who have not received the
United States, 28,500 new titles were published,
training necessary to utilize aids effectively. The
but only 600 were Brailled for addition to
need, then, is for a concerted, systematic effort
libraries for blind persons.
to provide a more effective service delivery
Recent technological advancements have con-
system and to alert the general public to ways in
centrated on speeding up the production of
which partially sighted individuals can be
Braille. In 1959, a systems approach to com-
assisted.
puter Braille production was initiated at the
Massachusetts Institute of Technology. Work has
Aids for Blind Persons
continued successfully at the American Printing
House for the Blind and between 1964 and 1970
Blind individuals have expressed a need for
it has produced over 1,000 volumes using
both Brailled materials and recorded cassettes.
computer translation. Atlanta, Georgia has been
In 1962, a study of blind college students by
using a computer system for several years and
"Recordings for the Blind" indicated that 34%
can deliver Braille material to all blind school
of 402 blind college students preferred auditory
children in the Atlanta area with a turnaround
cassettes for long, descriptive, non-technical
time of about one day.
texts and 91% for light reading. Many students
The Transicon (an individual computer) is a
wanted Braille texts in areas where they are not
recent development from Israel. It is operated
available. The students felt that Braille was
by the blind person himself. It reads at 22
important in learning formulas or other tasks
characters per second at a projected cost of
requiring memory and, therefore, requested
between $1,000.00 and $10,000.00. This com-
Brailled materials in language courses, mathe-
pares with current commercial units which read
matics and other complex content fields.
at 1,000 to 100,000 characters per second at
Normal speech rate of 180 words per minute
costs exceeding $100,000.00.
is too slow for many blind persons. In the past,
Other aids have been developed which are
speeding up the tape has resulted in a change of
commonly referred to as direct reading aids and
voice pitch to higher frequencies. Currently,
concentrate on converting the printed page into
experimentation is being done with compressed
a code to be interpreted by the blind reader
speech, a technique for speeding up the rate
himself. For example, in 1972, the Stereotoner
while retaining intelligibility, and a few electro-
was developed with this need in mind. It scans
mechanical speech compressors are now avail-
the printed page and converts the print into
able.
musical chords to be interpreted by the reader.
For voice recording and playback, there is
The Optacon, also a direct reading aid, scans the
a variety of commercially available disc and tape
page with a small optical pickup manipulated by
equipment. The Library of Congress has adopted
one hand and sends a tactile copy of the letter
a cassette tape format for its "talking books"
to a finger of the other hand.
program. (The Library of Congress recorder
Much more experimentation and research is
provides a quick-scan reference using the fast
needed to provide a direct reading aid which can
12
be used by the majority of blind persons, at a
Aids for Other Physically
reasonable cost.
Handicapped Persons
Aids for Hearing Impaired Persons
There are sensory aids which can assist physi-
Aids for hearing impaired individuals have
cally handicapped individuals who have some
focused on the improvement of hearing and
degree of difficulty in speaking and other
speech and the conversion of the auditory
persons whose handicapping conditions affect
stimuli to a visual or tactile signal. Hearing aids
their manipulative abilities. The selection of
are developed on both an individual and group
sensory aids to be used by these individuals
basis. The induction loop group system is one of
depends on the person's language and communi-
the newer successful advancements in this area.
cation skill, his physical abilities and the func-
Although hearing aids have advanced in quality,
tions to be fulfilled by the communication
cost factors continue to create a problem. For
system.
example, individuals in low income brackets
Communication aids for this group of handi-
utilize only one half as many aids as do persons
capped individuals can be categorized in the
in higher income brackets. It has been estimated
following manner:
that the approximate cost of the parts for a
hearing aid is $24.00; the wholesale price,
A. Scanning aids;
$140.00; and the average retail price, $350.00.
B. Encoding aids; and
(Consumer Reports, May 1971) Commercial
C. Direct selection aids.
producers claim this mark-up is necessary be-
cause of the low volume of sales.
A scanning aid is one which presents choices
New developments in individual hearing aids
to the user sequentially and the user indicates
have basically been concerned with the frequency
his selection by signaling when a desired choice
range of the hearing aid, attempting to extend
is presented. An example of a scanning aid is the
the range, focus the range, or convert informa-
Alphabet Message Scanner. This device permits
tion from one frequency range into another.
the individual to communicate by selecting
Thus far, there is no conclusive evidence that
letters, numbers, words or phrases on a display
any of these techniques has significant value.
panel. The cost of this device is $300.00. The
Current research is focusing in the area of
Auto-Com is another fully portable aid which
development of electrocortical aural prostheses
transfers the letter selected by the individual on
(devices to directly stimulate the auditory area
a communication board to a T.V. screen (ap-
of the brain). Although the work is challenging,
proximate cost $2,500.00). Aids have been
much more progress needs to be made before
developed ranging from very simple communica-
significant results can be obtained.
tion boards that have a variety of communica-
Speech training and speech perception aids
tion symbols on them (i.e., pictures, Bliss
have been developed which focus on the trans-
symbols, printed word, etc.) to highly complex
ference of the auditory signal into visual or
electronic instruments. Over sixty such aids have
tactile information. These aids are to be used by
been produced and are commercially available
the hearing impaired person to improve his per-
today.
ception or to monitor his speech. These devices
Encoding is a technique in which the desired
range from simple displays of lights to complex
output is imprinted by the aid by multiple
pattern responses to sound. The computer is also
inputs which must be memorized or looked up
being investigated as a possible aid for speech
on a chart. The Code Operated Selector is an
development.
example of an encoding aid. With this device a
Aids for Deaf-Blind Persons
code is programmed into the unit by two
switches which can be operated by hand or foot.
Aids in this area concentrate on converting
The code used is the Morse Code with one
visual signals into tactile impressions of one type
switch producing the dot and the other the dash.
or another. One of the most useful devices is a
A direct selection aid is one in which the
typewriter, known as the Tellatouch, on which
output desired is directly indicated by the user.
any person can type a message to the deaf-blind
In a direct selection aid, there is a key or sensor
person who receives it at his fingertips in a
area for each possible output selection. Anrowd
Braille impression.
is an example of a direct selection aid. The
13
system has three control modules, a typewriter,
Communication is basic to man. Without the
a pneumatic control which controls the display
ability to communicate ideas, needs and feelings,
of letters when one sucks or blows on a tube and
the individual is reduced to a passive observer of
a control which displays letters and is operated
life. His level of independence is affected.
by pushing a combination of two out of eight
Therefore, to deny communication is to deny
switches.
basic human rights.
In process of development for individuals who
are unable to speak (i.e., some persons who are
severely physically handicapped, stroke victims,
BIBLIOGRAPHY
individuals with laryngectomies, etc.) is a device
known as the Talking Brooch. This aid has a
A Statement of Shared Needs and Goals. Final
typewriter keyboard which can be held in the
Report of the Illinois Conference of Handi-
hand and a display brooch which is worn by the
capped Citizens, 1975.
individual. The person types out his message
George, B.J., Jr. Legal Status of Interpreting for
which then appears electronically in print on the
the Deaf: Report, Center for Law and the
brooch. This system is not commercially avail-
Deaf, Washington, D.C. 1975.
able at this time, but holds much promise for
Goldfish, Louis H. American Foundation for the
the future.
Blind Report on Vision Impairment Statistics,
For those individuals with severe physical
1972.
handicaps which preclude the use of their hands,
"Hearing Aids: What the Buyer Should Know."
a new typewriter, the Possum Typewriter Con-
Consumer Reports, May 1971.
trol System, is available. This device works in a
Human Communication and Its Disorders: An
variety of ways and is adaptable to the indi-
Overview. U.S. Department of Health, Educa-
vidual's specific needs. For example, it can be
tion and Welfare. Public Health Service. Na-
operated by suction from the mouth or by a
tional Institute of Health, Bethesda, Maryland
knee, head, or foot switch.
1970.
Improving Services to Handicapped Children.
Health, Education and Welfare Report. 1974.
CONCLUSION
Kinney, Richard. Touch Communication.
Hadley School for the Blind, Winnetka, Ill.
Legislation has been cited as a means of
1969.
providing better services for handicapped per-
Malone, Joy, Deaf People and Telephone Com-
sons. However, new legislation is not always the
munication with Government: TTY Means
answer. The anwer frequently lies in the imple-
und Ways. Graduate paper, unpublished,
mentation of current legislation. Economic bar-
1976.
riers are also present. The low incidence of many
Mann, Robert W. Technology and Human Re-
handicapping conditions causes commercial
habilitation: Prostheses for Sensory Rehabilita-
firms to question how they will make a profit on
tion and/or Sensory Substitution.
any materials or equipment they develop or sell.
National Center for the Law and the Deaf
It is important to help these firms understand
Newsletter. January, 1976.
that many of the items which they might
National Workshop on Non-Vocal Communica-
produce have a market far greater than the
tion Techniques and Aids, Proceedings. Uni-
specific target population for which they are
versity of Wisconsin, 1975.
designed. For example, the purchase of a TTY
News-Federal Communication Commission Re-
by a family with a deaf family member will
port No. 11457. December, 1975.
encourage the purchase of additional TTYs by
Schein and Delk. The Deaf Population of the
relatives or close associates who hear. This is
United States: A Census Report. NAD, Silver
true except in those cases where the aid is
Spring, Maryland, 1972.
specific to the nature of the handicap (i.e., low
"Selected Research Development and Organiza-
vision aids, hearing aids, etc.). In these cases new
tional Needs to Aid the Hearing Impaired."
ways must be sought to reduce the cost and
National Academy of Engineering, 1973.
make any aid which reduces communication
"Sensory Training Aids for the Hearing Im-
barriers available to all persons, on a low cost
pared," National Academy of Engineering
basis.
Proceedings, 1971.
14
Smolski, Walter. Telephone Typewriter Com- State Wide Bulleíin-Illinois Association of the
munication for the Deaf, A.S.H.A., March
Deaf, Winter-1976.
1976.
15
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
TRANSPORTATION ACCESSIBILITY
Awareness Paper Prepared by
Helen F. Goodkin
Helen F. Goodkin & Associates
Chicago, Illinois
Pub. WHC -- 15
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank, for
her review of this paper:
Mrs. Kathaleen C. Arneson
Rehabilitation Services Administration
Department of Health, Education and Welfare
Washington, D.C.
This Awareness Paper was prepared by a subject-matter expert to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This paper was not intended to be all-inclusive, but
was designed to stimulate discussions.
TABLE OF CONTENTS
Page
Introduction
1
Historical Perspective
1
Mobility-Limited Population
1
Legislation-The Right to Travel
1
Mass Transportation and Employment
2
Mass Transit
3
Urban
3
UMTA Regulations
3
Buses
4
Rapid Transit
5
Dial-a-Ride
7
Rural Areas
8
Commuter Railroad.
8
Private Vehicles
8
Automobiles
8
Private Bus Service and Taxis
10
Long Distance Transportation
10
Air Travel
10
Amtrak
11
Interstate Buses
12
Ships, Boats, and Ferries
12
Communications
12
Conclusion
13
Bibliography
13
INTRODUCTION
walker, a wheelchair, or a prosthesis, or it may
simply impair the ability of the person to utilize
Those of us who remember Christmas of 1973
stairs and heavy doors, walk long distances, or
will probably never forget it. Laced in with Santa
understand the complexities of transit schedules
Claus, eggnog, and Christmas cookies, were long
and procedures.
lines of motorists waiting angrily, often fearfully,
Estimates of the number of persons who suf-
at filling stations. The oil embargo made us
fer from a mobility-limitation that prevent or
realize that we were a nation of auto-dependent
hinder their use of public transportation vary
people and we couldn't quite believe the situa-
greatly. They range from 5 million to about 44
tion we were in. Rationing, higher taxes, or
million, depending on who was counting and
worst of all, no fuel loomed rather heavily on
how they defined their categories. A current,
the holiday horizon.
reasonable figure is 13,370,000 which "repre-
Each and every minority, and suddenly we
sents the number of American handicapped
had all become a member of some minority, was
(elderly and non-elderly) who suffer transporta-
certain that rationing should not apply to them.
tion dysfunctions." If the 13,036,000 elderly
Few people gave much thought to driving less
Americans who are not considered handicapped
and using public transportation more. Yet,
are added to this, the total is 26,406,000 per-
between the energy shortage and the pollution
sons who have at least some degree of difficulty
crisis, that is the path this country must follow.
utilizing public transportation. These figures
There was one group, however, with a legiti-
were developed by the Transportation Systems
mate case-those who because of physical or
Center for a study-entitled "The Handicapped
mental disability could not ride on public trans-
and Elderly Market for Urban Mass Transit,"
portation For the mobility-limited, driving to
prepared for the Urban Mass Transportation
work is not a luxury, but a necessity, caused by
Administration (UMTA), U.S. Department of
government and private industry's failure to take
Transportation.
their needs into account when planning trans-
For these people, steps, escalators, narrow
portation facilities. It is fortunate that the oil
doors, long corridors, and other architectural
embargo was lifted before anyone lost his job or
barriers, as well as poor lighting and signage,
had to quit school. Yet, one can't help wishing
represent almost insurmountable obstacles to
for some kind of crisis that would force trans-
the use of public transportation. In designing
portation planners to go beyond the policy
transportation facilities in this country as well
statements contained in legislation and take
as most public buildings, it seems the average
immediate, positive action to provide transpor-
needs of an individual are considered rather
tation to all U.S. citizens. Two years after the
than his maximum needs. We expect people to
embargo, the mobility-limited still cannot ride
adapt to the physical environment created,
public transportation, and there is no provision
rather than the other way around. Yet, when
to ensure that those who can drive an automo-
structural, mechanical, or electrical problems are
bile would get gasoline in the event of another
addressed, the maximum foreseeable extremes
energy shortage.
of performance are paramount. It is time that
we begin to view problems of design the way we
HISTORICAL PERSPECTIVE
view problems of structure. The easier public
transportation is to use, the more it will be used.
Mobility-Limited Population
Removing barriers helps not only handicapped
and elderly persons, but everyone-the man with
The mobility-limited population is those
many packages and the mother with a child in a
people who because of some physical or mental
stroller.
handicap have difficulty using public transporta-
tion. The handicap may be the result of paralysis,
Legislation-The Right to Travel
emotional disturbance, neuromuscular or neuro-
logical disease, arthritis, stroke, mental retarda-
Congress has been aware of the problem for
tion, severe pulmonary or cardiac disease,
many years, and several pieces of legislation have
blindness, deafness, amputation, temporary in-
been passed to deal with it. The language of
jury, or the natural process of aging. The handi-
these laws is general, and the Department of
cap may result in the use of canes, crutches, a
Transportation (DOT) has been slow to develop
1
specific policies, regulations; and criteria relating
handicapped persons." In addition, the Federal-
to travel for persons, who are handicapped and
Aid Highway Act and the National Mass Trans-
elderly, and there has been almost no enforce-
portation Assistance Act of 1974 (P.L. 93-503)
ment of any of this legislation.
provided for a number of special services and
In 1965, Congress formed the National Com-
funds to assist handicapped and elderly individ-
mission on Architectural Barriers to Rehabilita-
uals which will be discussed later.
tion of the Disabled. Its report resulted in re-
The Rehabilitation Act of 1973 did more
commendations that were made effective in
than provide guidelines and funds for rehabili-
1968 with the passage of The Architectural
tation programs operated by the Department of
Barriers Act (P.L. 90-480) which made it incum-
Health, Education and Welfare. This landmark
bent upon the Federal government to ensure
piece of legislation addressed, for the first time,
that all buildings or facilities financed with
the overall problems of handicapped individuals.
Federal funds were designed and constructed to
In addition to an affirmative action employment
be accessible to physically handicapped persons.
policy, it set up the Architectural and Trans-
The committee report accompanying P.L. 90-
portation Barriers Compliance Board which is
480 urges that "the word building as used in this
charged with seeing that the provisions of P.L.
bill be given the broadest possible interpretation
90-480 are adhered to. Made up of representa-
and include any structure which must be used
tives of nine Federal governmental agencies,
by the general public, whether it be small rest
the Board hopes to address itself to a wide variety
station in a public park or a multi-million dollar
of barriers problems.
Federal office building." No specific mention
More importantly, however, Section 504 of
of vehicles or conveyances is made.
the Act is the broadest statement, to date, against
Congress continued to press for barrier-free
discrimination of handicapped persons. It states,
design with the passage in 1970 of the Biaggi
"No qualified individual in the United States
amendment (P.L. 91-453) to Section 16 of the
shall solely by reason of his handicap, be ex-
Urban Mass Transportation Act of 1964 which
cluded from the participation in, be denied the
made it a "national policy that elderly and
benefits of, or be subject to discrimination under
handicapped persons have the same rights as
any program or activity receiving Federal
other persons to utilize mass transportation
financial assistance."
facilities and services." This amendment futher
Based partially on Section 504, a suit was
specifies that not only must "special efforts"
brought in 1975 against the Jefferson County
be made to provide such facilities and services to
Transit Authority, Birmingham, Alabama, by a
elderly and handicapped individuals, but that
handicapped person who was unable to board a
"all Federal programs offering assistance in the
bus. The Federal District Court Judge said, in
field of mass transportation contain provisions
part, that the individual was not denied the
to implement this policy.'
benefits of the bus since she could ride the bus
The Federal-Aid Highway Act of 1973 (P.L.
if carried. on and off. An appeal is pending. It
93-87) also required that projects funded by the
is interesting to note, here, that the Urban Mass
Highway Trust Fund "shall be planned, designed,
Transportation Administration does use Section
constructed, and operated to allow effective
504 as part of its authority for regulations which
utilization by elderly or handicapped persons
have been proposed governing transportation
including those who are non-ambulatory wheel-
for handicapped and elderly people.
chair bound
who are unable without special
facilities or special planning or design to utilize
such facilities
Mass Transportation and Employment
The 1974 amendments to the Federal-Aid
Highway Act (P.L. 93-643) broadened the in-
Federal legislative precedents for travel of
tent of Congress even further by stating, "The
handicapped individuals have been set largely in
Secretary [of the Department of Transportation]
the areas of architecture and mass transportation.
shall not approve any program or project
This does not discount the importance of travel
which does not comply with the provisions of
by airplane, railroad, commercial bus, or boat,
this subsection [subsection (b) of section 165]
but it does reflect the vital link between em-
requiring access to public mass transportation
ployment and transportation. According to Dr.
facilities, equipment, and services for elderly or
Henry B. Betts, Executive Vice-President and
2
Medical Director of the Rehabilitation Institute
to work, and 60% of these did not have it. Of
of Chicago:
the same group, 71% had to be driven by friends
or family; 20% could drive; 11% were home-
If the millions of dollars spent each
bound primarily because getting in and out of ve-
year on the rehabilitation of handi-
hicles was impossible. Of the total, 25% spent
capped individuals are to have any
$11.00 a week on transportation (6% over $76 a
meaning, the environment, the com-
week), though only 12% were working at the
munity as a whole, must be open to
time of follow-up.
them. They must return to the main-
Economically, the elderly population is not
stream of life as quickly as possible;
dissimilar from the handicapped population, and
they need a job rather than welfare;
it is not surprising that both groups travel about
they must be socially and economically
1/2 to 1/3 as much as the general population.
independent. If the bridge to em-
For the most part, these are essential trips to
ployment is crossed, almost everything
medical appointments or shopping. When they
else will fall into place.
do travel, they are generally forced to use high
cost taxis (14% of the trips by handicapped
Abt Associates, in a study done for DOT in
persons are by taxi versus 2% for the population
1969, estimated that 59% of handicapped
as a whole) or are driven by a friend or relative
persons have combined family incomes of less
in a private car. Until such time as public trans-
than $3,000 a year and only 10% earn over
portation is made available to this segment of
$10,000. These low income figures are due
the population, their isolation will continue.
largely to the inability of the handicapped popu-
lation to secure employment. While 65.1% of
MASS TRANSIT
the non-handicapped population (age 17-64)
enters the work force, only 47.8% of the handi-
Urban
capped population is employed. Abt Associates
also estimates that 67% of unemployed handi-
In recent years, mass transit services-bus,
capped persons would seek employment if ac-
rapid transit, and commuter railroad-have
cessible, low cost transportation were available.
come under increasingly heavy economic pres-
If these people become part of the work force,
sure as costs of maintaining lines and improving
minimum yearly economic benefits (total yearly
services have risen faster than revenues. Almost
increase in goods and services) of $824,000,000
all significant capital for this purpose must come
would result. This figure does not take into
from Department of Transportation (DOT)
account such things as increased income tax
funds. Despite legislation, accessibility has not
revenues or decreased welfare payments, nor
been a major priority of DOT in granting funds.
does it take into account such unquantifiable
The Urban Mass Transportation Administration
factors as increased educational and vocational
(UMTA) in DOT has funded a few research and
opportunity, or the social and psychological im-
demonstration projects, but until very recently,
pact on the handicapped individual.
it has exerted little or no pressure on local transit
The Report of the Comprehensive Needs
bodies to achieve or even work toward acces-
Study of Individuals with the Most Severe Handi-
sibility.
caps, mandated by Section 130 of The Rehabili-
UMTA Regulations
tation Act of 1973, painted an even bleaker
picture.
In response to increasing demands for acces-
Two sample groups were studied: 1) Patients
sibility, both from Congress and the consumer,
in a comprehensive medical rehabilitation facility
UMTA began in 1974 to develop regulations for
(at the time the study began) and 2) Individuals
handicapped and elderly transportation service.
rejected by Vocational Rehabilitation Placement
Hearings were held on the proposed regulations
agencies as too severely disabled. With the first
in the spring of 1975, but no final statement has
group, transportation was the greatest, single
been issued. If adopted as proposed, the regula-
unmet need. A significant number of persons in
tions would require that all transportation plans
both groups indicated that transportation was
the major reason for not working. Of the rehabi-
*This paper was prepared in March 1976, before final regulations
litation group, 45% needed transportation to go
were issued by UMTA.
3
and capital improvement programs submitted to
hurts non-handicapped and handicapped citizens
UMTA must meet the needs of elderly and handi-
alike.
capped persons. Determining the needs of dis-
Senator Harrison Williams has introduced a
abled individuals in "a service area and meeting
bill (S. 662) which would legislate many of the
these needs is a key priority. Under the regula-
proposed UMTA regulations. It has passed the
tions, fixed facilities to be constructed with
Senate and is currently pending in the House.
DOT funds must comply with the "American
While the bill states that no project receiving
Standard Specifications for Making Buildings
Federal funds may be designed or constructed
and Facilities Accessible to, and Usable by, the
unless it is accessible to handicapped and elderly
Physically Handicapped" (the ANSI Standards).
persons, and no vehicle may be purchased unless
Any remodeling projects relating to "stairs, doors,
it is usable by disabled individuals, it makes no
elevators, toilets, entrances, drinking fountains,
specific mention of the remodeling of fixed
floors, telephone locations, curbs, parking areas,
facilities. With regard to step entry vehicles, it
or any other facilities susceptible of installation
states: "Standards issued under this paragraph
or improvements to accommodate the physically
shall insure accessibility by elderly and handi-
handicapped" must also incorporate the ANSI
capped persons, with such reasonable exceptions
standards unless "the alteration
is
not
from full accessibility standards as the Secretary
structurally possible."
[of the Department of Transportation] may
In the proposed regulations, level-entry
deem required by the nature of the vehicle, its
vehicles (train cars) shall have entrances and
proposed use, the commercial availability. of
exits with 36-inch clearance and doors that open
reliable equipment to facilitate accessibility, the
automatically; the elevation between the
number of handicapped or elderly in the com-
platform and the vehicle shall not exceed 1.5
munity, or the availability of alternative, equally
inches and the horizontal gap between platform
adequate, transportation facilities for the elderly
and doorway shall not exceed 2 inches; and there
or handicapped."
will be space inside the car for wheelchairs with
securement devices. Step entry vehicles shall have
Buses
uniform steps of no more than 8 inches, priority
seating, and certain lighting specifications. Both
step entry and level entry vehicles shall have an
The question of available, accessible bus trans-
accessible fare collection system, and audible
portation throughout a mass transit system has
and visible information systems. Buses, however,
not really been addressed by transit planners.
are not required to have lifts or ramps.
This is due, at least in part, to the pending DOT
The proposed regulations, if adopted as
Transbus program. There is at the present time
presently outlined, represent only a partial
really only one basic bus design in the U.S. mar-
victory for the mobility-limited. While P.L.
ket, and the Transbus program is UMTA's re-
90-480 specifically states "all facilities," the
search project to develop "the bus of the future"
UMTA regulations are restricted to those struc-
that will contain the first basic changes made in
tures which are to be used by handicapped per-
urban transit buses in more than 15 years.
sons. This includes stations, but not any building
In 1971, sub-contracts for this more than
"which need not
because of its intended use,
$25 million project were made with American
be made accessible
to the handicapped."
General Corporation, GMC Truck and Coach
There are loopholes for remodeling which could
Division, and Rohr Industries to develop their
allow for large capital expenditures without
own designs, based on pre-determined criteria.
providing even partial accessibility. Finally,
The buses were to be wider and sleeker, with
while accessible buses with a lift or ramp were
improved heating, lighting, and air conditioning,
required in a previous draft of the regulations,
and capable of speeds of up to 70 miles an hour.
no such requirement exists in the present version.
They were to have lower floors and smaller steps
The major problem, however, is that UMTA has
up into the bus. Each company was to address
been considering various versions of the regula-
itself to the question of accessibility for handi-
tions for a year and a half, and the purchase of
capped persons. The buses were tested in 1974,
transit vehicles, especially buses, has come almost
and the new bus was to be developed by 1977.
to a stand still while bus manufacturers and
To date, however, no selection has been made
transit authorities await UMTA policy. This
by UMTA.
4
The problem, it would seem, is that no one is
willing to go into production. Re-tooling for a
really satisfied with any of the designs-
limited order is too expensive.
manufacturers are reluctant to retool for the
New York City has recently purchased 398
new designs; transportation authorities are
"kneeling" buses from the Flexible Bus Com-
horrified by their increased cost; and handi-
pany. The driver of these vehicles can lower the
capped persons are not pleased with the ac-
bus several inches to the curb level so that elderly
cessibility features. The whole project is so
and ambulatory handicapped passengers can
bogged down that General Motors is going ahead
have almost level entry to the bus. These buses
with the design and manufacture of a new high
will be put into use throughout the system and
floor bus.
will represent between five and ten percent of
All the Transbuses have a 40-inch door and
the fleet. The Massachusetts Bay Transportation
space inside to accommodate a wheelchair. The
Authority (Boston) has recently ordered 25
AM General design requires a curbside plat-
buses with hydraulic lifts for use by persons in
form and a flat ramp built into the bus which
wheelchairs.
bridges the gap. The bus has a special feature
Consumer groups in Baltimore and Milwaukee
built into the suspension system which allows
have recently obtained court injunctions to pre-
the driver to adjust the height of the bus floor
vent the purchase of new transit buses unless
to any point between 17 and 20 inches off the
they are wheelchair accessible. Negotiations fol-
ground.
lowing the Baltimore suit, resulted in the pur-
The GM design calls for a hydraulic lift which
chase of 10 mini-buses and the creation of a
projects from the front step when needed. The
dial-a-ride service. Moreover, several special fea-
Rohr design includes the "kneeling" suspension
tures were added to 208 new buses to increase
feature found in the AM General bus and a ramp
ease of entry and exit, provide extra handrails
which projects out from under the bus floor and
and lighting in the step area, and a reserved
lowers to the curb. The four foot ramp utilizes
section for handicapped and elderly persons. In
almost a one in seven ratio which is steeper than
Milwaukee, no agreement has been reached.
that allowed by the American National Standard
The paradox is, however, that while there is
on accessibility.
almost no totally accessible public transportation
Handicapped groups who tested the buses
in this country, Federal legislation now requires
throughout the country were generally not im-
that transit providers give handicapped as well as
pressed with them. The ramps were too steep;
elderly persons reduced fares during non-peak
the lift platforms not wide enough, etc. The
hours. (Section 5(m) and Section 108 of P.L.
biggest drawback, however, is that the acces-
93-503, The National Mass Transportation
sibility features are optional, according to the
Assistance Act of 1974.) While this legislation
interim regulations for Section 16 (a) of the
does benefit those handicapped and elderly
UMTA Act. UMTA policy on Transbus, when
individuals who can somehow climb up the
finalized, may alter this position.
steps of a bus or negotiate the steps of a rapid
Community action on accessible buses is slow.
transit system, it has become a public relations
The Bay Area Rapid Transit District in San
heyday for transit authorities across the country
Francisco subcontracted its bus service out to
who have used this to improve their image in
AC Transit Company with the understanding
the community at large without improving the
that the buses, which primarily provide service
lot of severely disabled people in any way.
to rapid transit stations, would be accessible.
However, design specifications could not be met
Rapid Transit
by manufacturers and 36 inaccessible buses were
purchased, despite the fact that UMTA had pro-
In recent years, three major cities have under-
vided funds for lifts.
/taken to build new rapid transit lines-San
In the Southern California Rapid Transit Dis-
Francisco, Washington, D.C., and Atlanta. In
trict (Los Angeles) the Board of Directors passed
San Francisco and Washington, D.C., accessibility
a resolution requiring that all buses be accessible
provisions both for stations and rolling stock
and has held up purchase of buses until such
were forced on transportation officials well
time as accessible buses can be built. However,
after most of the planning and designing had
until the Transbus controversy and the UMTA
been completed. ANSI specifications regarding
regulations are settled, no company has been
wide doors, elevators, accessible fare collection,
5
and wheelchair space inside the cars, had to be
and all other related facilities necessary for this
added after most of the planning and designing
system will in fact be subject to the requirements
had been completed.
of P.L. 90-480." Metro planners, however,
The Bay Area Rapid Transit Authority (San
elected to provide accessibility only through the
Francisco) became the first accessible system
use of escalators, rather than elevators. The
only after legislation passed by the State legisla-
planners felt that the increased ridership which
ture and signed by the Governor required that
elevators would allow did not justify the ad-
these provisions as well as accessible restroom
ditional cost.
facilities be included. The result is an accessible,
Washington area consumers brought a suit in
but not necessarily truly usable system. Long
1973, and in the Fall of that year, a Federal judge
distances must often be traveled to go from the
ruled that if the stations were not accessible, the
elevator to the entrance gate and from that gate
system could not be used by the public. This
to the boarding platform. Assistance is needed
forced Congress to appropriate an additional
to enter elevators and in some stations, to go
$65 million to cover what was then the "ad-
through the turnstyles.
ditional" cost of accessibility. In 1975, the
Transit officials nationally have been using
Federal District Court prevented Metro from
BART as an example of why rail transit should
opening stations that were not yet accessible. In
not be made accessible. They argue that it cost
the negotiations that followed, it was agreed
$10 million to add accessibility features, and to
that Metro would install elevators.
date, ridership by handicapped persons is low.
The problems which concerned Metro planners
Disabled people are not, they argue, physically
were not ridership alone, but also security with-
able to utilize mass transit; they need the door-
in the elevators and the high cost of maintaining
to-door service provided by special bus systems.
them. (Estimates for maintaining the Metro ele-
The crowds, rapid door closing, and sometimes
vators run as high as $1.25 million annually).
jerky motion are "too much" for them.
The answers to these problems are more difficult
There are, however, several factors to consider.
than technology for accessibility. Security can
First of all, it takes a long time to wean a person
be improved significantly by keeping elevators,
from his car back to rapid transit. This is true of
escalators, and fare collection in a central core,
non-disabled persons, but especially true of
not spread throughout the system. Both BART
handicapped individuals who have probably
and Metro were unable to achieve this because
never riden public transportation at all. It will
elevators had to be fitted-in very late in the plan-
come in time, particularly as the costs of car
ning. Maintenance is expensive, but in the long
maintenance increase. Secondly, the feeder
run, cheaper in terms of pollution and energy
buses serving the BART stations are inacces-
consumption than private autos.
sible; a handicapped person must either live
In Atlanta, where rail service is expected to
within a few blocks of a station, drive, or be
begin late in 1978, concern for accessibility
driven to the station in a private car. Thirdly,
came about after planning had begun, but before
BART has no week-end service, thus eliminating
most bids had been issued. As a result of public
most cultural and recreational trips. Finally, one
hearings on reduced fares for persons who are
must keep in mind that San Francisco and the
elderly and handicapped, an Elderly and Handi-
communities around it are inaccessible. Curb
capped Advisory Committee to MARTA (Metro-
ramps are few and far between; most buildings
politan Atlanta Rapid Transit Authority) was
are not accessible. But, any community with a
formed. This group is reviewing rail planning
capital investment project of this magnitude,
and design, and recently made a request to
must look to the future. BART was not designed
MARTA's constituent governments to take posi-
for the next ten years, but the next 50-75 years.
tive action to remove architectural barriers to
As architectural barriers to disabled persons come
movement outside the transit system.
down within the community, BART and other
Their problem, as with the systems in San
rapid transit systems must be prepared to serve
Francisco and Washington, D.C., is forcing the
their needs.
architects and engineers to go back to their
In Washington, D.C.'s Metro system, acces-
drawings and make the changes required for
sibility features came about after the fact, despite
total accessibility. As with the BART and Metro
P.L. 91-205 which stated that "construction of
systems, it is possible to comply with the
the subway stations, entrances, and exits thereto
law and still not provide convenient, accessible
6
transportation. The questions that must be ad-
speed trains and how they will move through
dressed are: If a person with limited stamina must
crowds and electrically controlled doors. They
go one-half mile out of his way to utilize the ac-
demonstrate a type of naivete about the capabi-
cessible entrance to a station, have we provided
lities of the mobility-limited-they are not
accessible transportation? Will he give up his
patients, but healthy, medically stable individ-
automobile to relieve inner city congestion or
uals who have difficulty walking, using their
make a trip he would not otherwise make? The
arms, negotiating stairs, or riding high speed
answers are "No."
escalators.
Transportation must be convenient as well as
accessible if it is to be utilized by the handi-
capped or the non-disabled rider. Atlanta, how-
Dial-a-Ride
ever, has great potential for meeting the needs of
handicapped people. Partly, of course, because
Most planners, it would appear, prefer trans-
they have two prior systems from which to learn;
porting elderly and handicapped persons on
partly, becasue of the constructive dialogue
special, demand responsive, door-to-door bus
which is taking place between consumer and
services, equipped with lifts or ramps. This serv-
provider.
ice attempts to combine the door-to-door con-
Even greater problems result in cities where
venience of the taxi with the economic value of
existing rail service is inaccessible. New York,
a bus. Where no other public transportation
Chicago, and Boston are confronted with the
services exist (suburban and rural areas), demand
almost overwhelming task of remodeling to pro-
responsive systems serve a need for those unable
vide accessibility. Some existing stations can
physically, mentally or financially to operate an
never be made accessible; others can only be
automobile. In cities where public transportation
made accessible at great, and perhaps unneces-
services exist, demand responsive systems are
sary, expense to the taxpayer. Most, however,
necessary only until existing services can be
can and should be remodeled. The law, however,
made accessible.
with respect to this point is unclear, and transit
The need for transportation is so great that
planners are not rushing into action.
social service agencies, hospitals, and other com-
Chicago's Transit Authority (CTA) is a typical
munity groups have started up a variety of
situation. Two proposed extensions of the CTA
individualized bus services in communities
system and the replacement of the elevated lines
throughout the country, run strictly on a non-
in the Loop with a new subway system are plan-
profit basis. Several municipal governments and
ned as fully accessible. All new rail cars have
transportation authorities have also begun sys-
been ordered with wider doors and interior
tems for elderly and handicapped persons using
wheelchair space. While the CTA is going ahead
revenue sharing money and, in some cases, DOT
slowly with some remodeling of the existing
demonstration funds and funds from the Older
system, it has done so reluctantly without any
Americans Act.
really active interest in the problems of handi-
Vans especially equipped with hydraulic
capped persons or feedback from them.
lifts, locking devices for wheelchairs, and specially
New York City's subway system remains
trained drivers are required for this service. In
almost totally inaccessible. Twenty-three stations
addition, routing of buses is time consuming and
have elevators, but in some, you must negotiate
tedious, particularly if the system is completely
stairs to reach them. State legislation required
demand responsive and door-to-door. Fixed route
that the new Second Avenue Line be accessible,
systems operating between certain points in
but work has been halted because of funding
communities are obviously more efficient than
problems.
systems which operate more like a taxi service.
Among transit planners as a whole, accessible
Recognizing the tremendous costs involved in
rail systems are generally considered costly and
programs such as these, the Federal-Aid High-
unnecessary, and accessible urban transit buses
way Act of 1973 has made capital funds avail-
unthinkable. According to planners, elevators,
able to non-profit corporations to purchase
especially in underground systems, are costly
accessible vehicles.
to build and expensive to maintain and present
The Department of Transportation has also
a safety hazard. Many planners express concern
funded a program for the development of require-
for how the "patients" will tolerate the high-
ments, concepts, and specifications for a "small
7
bus" which could be utilized in dial-a-ride serv-
elderly housing "in town." Not only is this a
ices.
new experience for them, but if community
Dial-a-ride services of all types currently have
transportation services do not exist, it is a very
estimated gross operating costs of $1.17 per mile,
limiting one.
of that 81¢ per mile is subsidized and revenues
Recognizing this need, the Federal-Aid High-
provide 22c per mile. Cities offering the services
way Act of 1973, as amended, authorized the
must absorb an average cost of 14c per mile.
appropriation of $75 million for a two year
Experts anticipate this cost rising to 60¢ a mile
program of demonstration projects for public
or more. A fleet of 25-50 buses, working 10
mass transportation in rural areas. This program
hours a day, would cost between $700,000 and
is jointly administered by two agencies in DOT,
$1.8 million annually and would accommodate a
the Federal Highway Administration and UMTA.
city of 100,000 covering a 20 square mile area.
DOT recognizes the need for such programs to
Transit authorities argue that superior service,
be adaptable to the needs of handicapped and
not cost, is the key factor in providing public
elderly people, both in terms of accessibility and
transportation. However, though it provides
travel requirements.
moderately priced and effective transportation,
dial-a-ride still exceeds the budgets of most of
Commuter Railroads
the handicapped and elderly people it is to serve.
The dial-a-ride systems which are successful are
Little is happening on commuter railroads in
those with a large ridership utilizing third party
terms of accessibility. Owned by private com-
payers. Several programs which began with
panies, their stations and other fixed facilities
Federal subsidy were forced to close down after
are old and inaccessible, and a handicapped per-
Federal support was withdrawn because of the
son cannot rely on them to bring him from his
gap between revenues and operating costs.
suburban home to his job downtown. In many
Dial-a-ride systems cannot operate without
parts of the country, this may limit severely
large operating subsidies. Many handicapped
his choice of community and will certainly make
consumers feel that if transit planners are
him totally auto dependent. Neither UMTA nor
allowed to provide only dial-a-ride service, as
the Federal Railroad Administration has priori-
transportation funds become tighter and tighter,
tized this branch of transportation, and consumer
these smaller special systems will be the first to
action is needed if change is to occur.
go.
Moreover, if the goal for handicapped and
PRIVATE VEHICLES
elderly persons is to bring them into the main-
stream of American life, can a separate-but-equal
Automobiles
system be condoned which does not allow the
mobility-limited individual to function under
The public transportation picture is generally
the same circumstances as the non-disabled
so bleak that most handicapped persons travel
person? They do not want a separate system,
by private car. This assumes they are able to drive
consumers argue. They have the same rights to
and can afford to buy and maintain an automo-
transportation as they have to police protection,
bile or van. If they cannot, they must depend on
education, and other public services.
the goodwill and generosity of friends and
family, a difficult solution at best.
Rural Areas
The problems of car ownership are many,
especially for the urban resident. In addition to
Even though 56% of handicapped and elderly
the cost of gasoline, maintenance, and insurance
citizens live in urban areas, mention must be
(which in many states is higher for handicapped
made of the specialized transportation problems
drivers than non-handicapped), the cost and
of the mobility-limited residents of rural areas
hassle of finding accessible parking is enormous.
where practically the only mode of transporta-
In Chicago, for example, it is not unusual for a
tion is the private car. Elderly people are partic-
person employed in the Loop to spend $100 a
ularly vulnerable in these areas. As they become
month on parking-a minimum of $35 in a garage
older, they are no longer able to work the farm
at his apartment and $45 at work, plus special
or even continue to live there. Their children
parking fees for trips to shopping, movies,
have moved away and so they come to live in
theatre, etc. A person, non-disabled or not, has
8
to have a fairly good job to support such ex-
tion requiring that all new or replacement curbs
pense. In suburban and rural areas, parking is
be constructed with a ramp.
generally free, but the accessibility problem re-
The problem of insurance is another area
mains. All too often handicapped persons find
which is beginning to be addressed by State
that a street curb prevents them from getting
governments. Not only must legislation be passed
out of their car, or a step up to an elevator pre-
prohibiting an insurance company from charging
vents them from using a parking garage.
handicapped persons higher rates, but also
The greatest expense, however, is the initial
insurance companies should be prohibited from
purchase of an automobile or van. If the individ-
refusing to insure a handicapped driver because
ual owns a car before he becomes disabled, it is
of his handicap. The record indicates that handi-
not difficult or costly to convert it to hand con-
capped drivers are average risks, with no more
trols. If, however, a newly handicapped person
traffic convictions than non-disabled people.
must purchase a car or van before he can start
Driver education programs for handicapped
employment, he or his family need substantial
people are increasingly available throughout the
financial resources. This expense may come after
country, and most States license handicapped
many months of costly hospitalization and re-
drivers except those who experience severe visual
habilitation therapy and is often a larger financial
problems or neurological impairment. Another
burden than the individual can afford. It must
exception is that in many States, persons who
also be borne in mind that compact, more
have been institutionalized for an emotional
economical cars are too small to accommodate
disturbance are denied drivers' licenses. A study
wheelchairs, forcing individuals in wheelchairs to
of licensure procedures for handicapped drivers
purchase larger, higher priced models which con-
has been funded jointly by DOT and the Bureau
sume more gasoline. If a person is unable to
of Education of the Handicapped (HEW). The
transfer or uses an electric wheelchair, he must
Department of Transportation has also supported
use a van equipped not only with handcontrols,
a number of research programs relating to driver
but also a hydraulic lift. This can easily cost as
education for handicapped persons, primarily
much as $8,000.
through The National Highway Traffic Safety
The whole area of vehicle design needs to be
Administration. Special emphasis is placed on
carefully examined with a view toward improved
deaf and mentally retarded drivers.
accessibility for persons experiencing all types of
Several pieces of Federal legislation have
mobility-limitations.
addressed the problem of the additional expenses
Many States and municipalities have begun to
incurred by handicapped persons who must
address themselves to the problem of parking for
maintain an automobile because accessible
handicapped citizens. Many State architectural
public transportation is not available to them.
barriers laws include provisions for wheelchair
Currently pending in Congress are at least three
parking stalls in lots and garages. These stalls re-
bills (H.R. 227, S. 103 and S. 467) which pro-
quire an additional five foot space for unloading
vide tax credits or deductions for employment
a wheelchair as well as level access from the space
related transportation expenses of handicapped
to adjacent facilities about it. In addition, many
individuals. Unfortunately, bills such as these are
States have begun issuing license plates with
introduced during almost every session of Con-
the barrier-free symbol to handicapped drivers.
gress and are never acted upon. Moreover, they
Any car bearing these plates is given special
are only beneficial to the handicapped person
parking privileges which allow it to park in areas
who is working and paying taxes. The low in-
where pärking is generally prohibited and to let
come person or the person on welfare who still
the meter run out.
has transportation requirements is not assisted
To assist the disabled driver as well as the
by tax credits.
wheelchair pedestrian, the Federal-Aid Highway
The larger problem of assistance for the pur-
Act (P.L. 93-87) requires that all streets con-
chase of an automobile has not been discussed
structed with Federal funds provide curb cuts or
in the Congress. The Veterans Administration
ramps for physically handicapped persons, in-
has set a precedent for Federal assistance in this
cluding those in wheelchairs. This means that
area by granting up to $3,300 for the purchase
ramps must be. constructed at intersections to
of a car and equipping it with hand controls.
allow a person in a wheelchair to cross the street.
Either direct grants through the Vocational
Many States and towns have also passed legisla-
Rehabilitation office in the State or a Federal
9
loan program for automobile purchase by those
is anyone's guess, and technology will never
individuals about to become employed would
solve the problem of the discourteous taxi driver.
give many persons the first chance at a job. At
least one state, Massachusetts, exempts handi-
LONG DISTANCE TRANSPORTATION
capped drivers from paying sales tax on automo-
bile purchases.
Air Travel
Private Bus Services and Taxis
Air travel remains difficult for the handi-
capped individual, even though persons in wheel-
Most large communities now have a private
chairs have flown literally hundreds of thousands
bus company that provides accessible transpor-
of miles without incident. Back in the late
tation to persons in wheelchairs. Generally,
1930's, United Airlines was the first commercial
these companies utilize vans similar to those used
airline to allow a blind person to fly accompanied
by the dial-a-ride services run by transit districts
by a seeing eye dog. Following the Second
and not-for-profit corporations. Handicabs in
World War, United was among the first of the
Milwaukee is probably the most famous of these
major airlines to assist disabled veterans to utilize
services, but by no means the only one.
air transportation. Fork lift trucks were used to
The problem with these services is the ex-
load wheelchair passengers. Since that time,
pense. It is not unusual for a round trip to cost
handicapped persons have flown so successfully
as much as $8 to $10. Companies which are
that even though tariff regulations continue to
operating profitably for the owners rely on
require that a handicapped individual be accom-
servicing clients of third party payers. Handi-
pained by a non-disabled attendant, United and
capped persons who pay their own bills utilize
most other major airlines ignore this provision.
these services only for absolute necessities such
The problem, however, lies in the fact that
as medical and therapy appointments. Only a
the Captain, not airline administrative personnel,
few utilize them for job related travel or recrea-
has the right to determine who is and is not able
tion.
to fly.' Thus, a handicapped person never
In some areas, taxis provide service for handi-
actually knows what airline policy will be until
capped individuals, again at substantial expense.
he gets to the plane. This is particularly acute
The problems with taxi travel are two-fold: 1)
when a trip requires a change of plane and/or
now that most cabs no longer have the larger
airline before the final destination is reached.
back seat, it is extremely difficult to make a
This uncertain policy creates the potential for
transfer into the back seat and many communi-
being stranded mid-trip. There have been several
ties forbid passengers to ride in the front; 2)
suits brought against major airlines by individuals
cab drivers are generally reluctant to take the
in wheelchairs who were not allowed to fly at
necessary time for a handicapped person to get
the last moment. One of them was a licensed
into and out of a taxi. Often the only method
pilot. Some suits have been settled out of court
of obtaining taxi service is to call and order one
and some are still pending.
by phone; hailing a taxi on the street from a
In June 1973, the Federal Aviation Adminis-
chair is generally ineffective because drivers
tration issued a notice of proposed rule making
refuse to stop.
directed toward amending the criteria for trans-
Checker Cab Manufacturing Co. has a vehicle
porting handicapped persons on civil air
which can accommodate wheelchairs, but it is
carriers. Hearings were held in the fall of 1973,
rarely used. The taxi designed several years ago
and in July 1974, proposed regulations were
at the Pratt Institute will, accommodate both
issued. Comments on these proposed regulations
wheelchair and ambulatory passengers, but it
were about 90% negative and the FAA is not
has never been put into production. Currently,
DOT is funding a project to develop a "low-
pollution para-transit vehicle that is suitable for
*The airlines establish their policy and rules or regulations based
taxi service." The contract provides for not only
on their tariffs filed with the Civil Aeronautics Board (CAB).
the design of the vehicle, but also the production
The pilot in command of an aircraft is directly responsible for,
and is the final authority as to, the operation of that aircraft.
of one model vehicle which accommodates am-
Therefore, if, in the pilot's opinion, the carriage of a handi-
bulatory and wheelchair passengers. How long it
capped person compromises safety, he has the authority to
will take to get an accessible taxi on the streets
deny that person on his flight.
10
planning to issue them. Instead an advisory cir-
time during the discussion of the regulations for
cular to airline companies and airport staff is
air travel by handicapped persons, has the ques-
being prepared by FAA. The FAA regulations,
tion of changing airplane evacuation equipment
as proposed, required that a handicapped person
or procedures been addressed.
be permitted to fly if he presents a medical
While the airlines are dragging their feet, air-
certificate dated within the preceding six
port operators are making big strides forward in
months stating that he does not need assis-
an effort to remove barriers from air terminals
tance to evacuate the plane, or be accompanied
across the country. The Airport Operators
by a non-handicapped attendant. Blind and deaf
Council International, in conjunction with the
persons were exempt, but few other guidelines
Architectural and Transportation Barriers Com-
on the types of disabilities which would be
pliance Board, is surveying every airport across
medically certified were given. In addition, the
the country to determine its accessibility. This
total number of handicapped persons per flight
information will be used to make modifications
was limited and the number and location of
in those airports which need it and to make
seats to which they could be assigned was
available to the mobility-limited public, as a
restricted.
whole, the information it needs to utilize these
Representatives of flight crews have testified
facilities. (Only large modern airports have jet-
at FAA hearings that travel by handicapped per-
ways, and boarding remains a problem in many
sons be restricted because of their fear that dis-
places). Guide-books, such as the one for
abled people will impede evacuation of
Chicago's O'Hare Airport, are being developed
non-disabled travellers in the event of a crash,
by airport officials across the country to provide
and because they are concerned for the safety of
information on airport accessibility.
handicapped passengers. Since there is very little
data available on evacuating handicapped people,
Amtrak
the FAA has been conducting tests at the Flight
Standards Technical Division in Oklahoma City
While, to date, there are few visible signs of
on plane evacuation procedures, initially utilizing
accessibility on Amtrak, a change appears to be
dummies, and more recently, with handicapped
in the wind. It has been Amtrak's policy almost
individuals. The tests reportedly indicate that
since its inception to accommodate elderly and
severely disabled people could be evacuated safely
handicapped persons, and the Amtrak Improve-
through those exits with chutes, without risk to
ment Act of 1973 (P.L. 93-146) reiterated this
themselves or others. A final statement from the
position, to the extent financial resources per-
FAA will reflect the results of these tests.
mit. As stated in the Act, Amtrak is to give
Meanwhile, handicapped individuals continue
consideration to the design and procurement of
to experience difficulty with air carriers. Their
special equipment and facilities, the conducting
business and personal lives can be altered drama-
of special training for its employees, and elimina-
tically almost at the whim of flight personnel
tion of existing barriers from its facilities.
who are not trained to recognize individual disa-
Although 88% of Amtrak's fleet was built prior
bilities or capabilities. It is time the FAA recog-
to 1950, and the costs of remodeling this equip-
nize that air travel by handicapped persons
ment are extremely expensive, some new
presents no unnecessary risks to their safety or
equipment has been placed into service. How-
that of other passengers and adopt regulations
ever, when handicapped persons tested the first
that will not infringe on the rights of handicapped
of the new cars in early 1975, they found that
citizens. There is legislation pending in the Con-
the aisles were 20 inches wide and the restroom
gress (H.R. 1348 and H.R. 6180) which would
doors only 19 inches. Meetings with consumers
amend the Federal Aviation Act to provide that
followed, and Amtrak agreed that all of the new
no physically handicapped person shall be denied
Amcafe and Amclub cars be accessible with 30-
air transportation because of his handicap. No
inch aisles and accessible restrooms. New designs
final action has as yet been taken.
for coach cars will have wider aisles. This repre-
Of even greater importance than the regula-
sents some significant work in terms of changes
tions, however, is the need for the FAA, the air-
in railroad car design.
line industry and airplane manufacturers to
In addition, Amtrak is in the process of
address the question of improved accessibility
making some stations accessible, either by build-
and improved safety in airplane design. At no
ing new stations without stairs and accessible
11
restrooms or through remodeling in compliance
station facilities, thus alleviating the friction
with the ANSI standards. To date, there are six
between the corporation and its drivers over
new or remodeled fully accessible stations. New
who is responsible for assisting disabled individ-
bi-level long distance cars will be accessible on
uals during their trip.
the first level only; they will, however, provide
Trailways has adopted a similar policy, and
coach and sleeping accommodations, restrooms,
both companies say that if you do not have an
and food service, Reservations may now be
attendant, "someone" will help you on and off.
made on the phone by deaf persons with tele-
It could be several months before ICC regula-
typewriting equipment. A prime mover in this
tions are finalized and even then, little improve-
drive for accessibility is the Interstate Commerce
ment will be seen until wheelchair accessible
Commission (ICC). Its statement, "Decision on
buses are designed, manufactured, and put into
the Adequacy of Intercity Rail Passenger Ser-
operation.
vice," while praising Amtrak for what it has
done to serve the mobility-limited, makes very
Ships, Boats, and Ferries
specific requests for improved service which
Travel by water is becoming less and less im-
should be put into effect in the next several
portant in this country, and, thus, not really a
years.
burning issue in terms of accessibility. Large
Interstate Buses
ocean liners have elevators, but door widths vary
from ship to ship. A person confined to a wheel-
chair would also find that he might have limited
In many sections of the country, interstate
access to the ship's facilities because door widths
buses represent the only means of commercial
vary within a ship according to use. Cabin facili-
public transportation; and in most cases, it is the
ties might also be a bit cramped.
least expensive mode. Concern for the rights of
Ferries, on the other hand, do provide needed
handicapped passengers prompted the Interstate
transportation in certain parts of the United
Commerce Commission to include, a section on
States. The Urban Mass Transportation Admin-
travel by handicapped persons in its Notice of
istration will provide funds for their purchase.
Proposed Rule Making, issued in June, 1975.
Generally, the main deck of a ferry boat is ac-
This section would require commercial car-
cessible, but upper and lower decks are not.
riers to provide assistance in boarding for
Terminals should also be made accessible.
handicapped passengers, to allow seeing eye dogs
to travel free of charge, and to require that all
COMMUNICATIONS
newly-built or remodeled terminals, including
restroom facilities, be designed to accommodate
Special attention must be given in all areas
handicapped individuals. The Commission's
of transportation to the problem of communica-
efforts to at least codify these rights of the
ting information to all passengers. This is partic-
handicapped bus traveler can only be applauded,
ularly important to persons who are blind, deaf,
but one does wish that it had extended its con-
developmentally disabled, and elderly, who are
cern into the area of bus design so that "assis-
almost totally dependent on public transporta-
tance" would not be the key word, because buses
tion. Such information benefits everyone who
of the future should be fully accessible by law.
must utilize the system.
It is interesting to note that shortly after
Blind persons require audible signals for the
these proposed regulations were issued, one of
signs which other persons read. Stops, arrivals,
the two largest commercial carriers, Greyhound,
and departures must be announced clearly and
began to offer (amidst a flurry of national
distinctly and in sufficient time to reach an exit
press) its "Helping Hand Service for the Handi-
door or catch a plane. Elevators should have
capped." Under this program, Greyhound allows
bells or buzzers, in. addition to lights, to
a handicapped person and his attendant to travel
announce their arrival. Braille maps and travel
anywhere in the United States for the price of
information brochures are helpful to those who
one. A doctor's certificate must be obtained.
read Braille. Doorsigns should have raised letter-
The wheelchair or any walking device is to be
ing. For the partially sighted, it is important that
carried for free. This, in effect, gets Greyhound
signs be in bold colors set one against the other
"off the hook." The attendant must be able to
in large bold face type so that they can be dis-
help the handicapped person board and utilize
tinguished readily.
12
Some deaf individuals are able to drive an
to implement by amendment and
automobile, but many rely solely on public
initiate the pressure for reform.
transportation. For these people, clear, accurate,
well located signs are necessary. In addition, all
Six years after the passage of Section 16 of
warning bells must be accompanied by flashing
the UMTA Act (Biaggi Amendment), the con-
lights or signals to alert deaf persons to danger.
sumer must yet remain vigilant. The battle for
Persons who are developmentally disabled
accessibility, indeed transportation in almost
(i.e. cerebral palsy, epilepsy, autism, dyslexia or
any form, has only just begun. Little progress in
mental retardation) generally have difficulty
terms of facilities built or vehicles purchased
obtaining a driver's license and must also depend
has been made. There is, however, a softening
on public transportation more than the general
of opinion at UMTA, FAA, and Amtrak. What
population. Reading may be a problem for
was unthinkable a few years ago is now at least
mentally retarded persons; the use of symbols
discussed. Progress by the transportation indus-
for exits, entrances, restrooms, loading plat-
try has been slow. But, a base has been built
forms, restaurants, etc., and color coding for bus
by consumers and consumer groups across the
and subway lines is most helpful. This will also
country upon which we can continue to build
assist the non-English speaking person whose
for an accessible nation for our third century.
usage of the system is clearly affected by the
This nation must provide its mobility-limited
language barrier. In planning a communications
citizens the same opportunities as non-disabled
network for a public transportation facility,
persons in employment, in recreation, in housing,
some thought should also be given to the person
but most of all, in transportation.
in a wheelchair or of a particularly small stature
who views signs from a different level than the
non-disabled adult. Signage should not neces-
TRANSPORTATION BIBLIOGRAPHY
sarily be lowered, but it should be located in
such a way as to be viewed and easily read from
(The following is a partial list of sources con-
a variety of different levels and locations.
sulted by the author which may be of interest to
While these recommendations for signage and
those seeking additional information.)
communication benefit mobility-limited groups
ABT Associates, Inc., Transportation Needs of
directly, they will also assist all persons who
the Handicapped, Report to the U.S. Depart-
utilize transportation systems.
ment of Transportation, Cambridge, Mas-
sachusetts: 1969.
CONCLUSION
Accent on Living, Summer, 1975, "Transporta-
tion for the Disabled," Bloomington, Illinois.
In 1972, Congressman Mario Biaggi, spoke to
ACCESS CHICAGO, Toward a Barrier-Free En-
the "Conference on Transportation and Human
vironment, Proceedings of the Conference,
Needs in the 70's" and said in regard to handi-
December 12, 1972, Rehabilitation Institute
capped persons:
of Chicago.
American Institute of Architects. Potomac Val-
[The costs of meeting the transporta-
ley Chapter. Barrier Free Rapid Transit; Final
tion needs of disabled persons] cannot
Report of the American Institute of Archi-
be discarded as fringe expenditures
tects to U.S. Social and Rehabilitation Serv-
when a cost-cut occurs. They have
ices Administration for the President's
an equal right to use the systems
Committee on Employment of the Handi-
and should have it as a matter of
capped. Silver. Spring, Maryland, 1969.
course.
Booz-Allen Applied Research, Report of the
Group, Provisions for the Elderly and Handi-
Transit authorities have turned over
capped in the Design of Transbus, Washington
this authority in this area to specialized
D.C.
agencies servicing only the elderly and
Finesilver, Sherman C. A Study on Driving
handicapped. This is certainly not
Records, Licensing Requirements and Insura-
being responsive to the letter or spirit
bility of Physically Impaired Drivers. Denver,
of Section 16. As I see it, though, the
Colorado, University of Denver, College of
people have the great responsibility
Law, Oct 1., 1970.
13
Little, Arthur D., Inc., Employment, Transpor-
Dec. 1970. 91st Congress, second session,
tation and the Handicapped, Report to the
Washington, D.C., U.S. Government Printing
U.S. Department of Health, Education and
Office, 1974, 4 parts.
Welfare, Washington, D.C.: 1968.
U.S. Congress. Senate. Special Committee on
Lundberg, Barry D. and Lustig, Charles W.,
Aging. Transportation and the Elderly:
Demand Responsive Transit Service: A New
Problems and Progress: Hearings, Pts. 1-4,
Transportation Tool, Planning Advisory Serv-
Feb 25-28 and Apr 9, 1974. 93rd Congress,
ice, American Society of Planning Officials,
second session, Washington, D.C., U.S.
Chicago, 1972.
Government Printing Office, 1974.
Meisenholder, G.W., "The Case for a Dial-a-
U.S. Department of Transportation, Urban Mass
Ride", Proceedings of the Greater Los Angeles
Transportation Administration, Proceedings
Area Trasnportation Symposia, 1972-1973.
of the Conference on Transportation and
National Center for Law and the Handicapped,
Human Needs in the 70's, June 19-21, 1972,
"Accessible Transportation: Will We Get
American University, Washington, D.C.
There From Here", Amicus Vol. 1 No. 2,
U.S. Department of Transportation, Urban Mass
Jan., 1976.
Transportation Administration, Public Trans-
National Urban League, Transportation for the
portation for the Elderly and the Handicapped,
Elderly and Handicapped, Report to the
Washington, D.C., 1971.
Urban Mass Transit Administration, Washing-
U.S. Department of Transportation, Office of
ton, D.C., 1973.
the Secretary, Travel Barriers, Washington,
Schleichkorn, Jacob S., Carriage of the Physically
D.C., May 1970.
Handicapped on Domestic and International
U.S. Department of Transportation, Transporta-
Airlines: A Report on the Policies, Rules and
tion System Center and Urban Mass Trans-
Regulations Affecting Travel of the Handi-
portation Administration, The Handicapped
capped. New York, United Cerebral Palsy
and Elderly Market for Urban Mass Transit,
Association, 1972.
Executive Summary, Washington, D.C., July
U.S. Congress. House. Committee on Public
1973.
Works. Subcommittee on Public Buildings
U.S. Department of Transportation, Transporta-
and Grounds. Design and Construction of
tion Systems Center and Urban Mass Trans-
Federal Facilities to be Accessible to the
portation Administration, The Handicapped
Physically Handicapped: Hearings, Dec. 9,
and Elderly Market for Urban Mass Transit,
1969, on H.R. 14464. 91st Congress, first
Washington, D.C.
session, 1970. (Com Pub. No. 91-23)
U.S. President's Committee on Employment of
U.S. Congress. House. Committee on Public
the Handicapped, Designing Public Transpor-
Works. Subcommittee on Public Buildings and
tation for Use by the Handicapped, Edward
Grounds. To Consider Accommodations for
H. Noakes. Reprinted from Performance,
Handicapped on Metro System (District of
monthly publication of the Committee, Wash-
Columbia): Hearings, Jun 29, 1972. 92nd
ington, D.C., U.S. Government Printing
Congress, second session. (Com Pub. No.
Office, 1969.
92-43).
White House Conference on Aging, 1971. Trans-
U.S. Congress. Senate. Committee on Public
portation: Background, (by) Joseph S. Revis;
Works. Accessibility To Physically Handi-
Issues, (by) the Technical Committee on
capped of Certain Public Facilities. Report
Transportation with the collaboration of the
No. 91-658 to accompany H.R. 14464. 91st
author. Thomas C. Morrill, Chairman, Wash-
Congress, second session, Feb 6, 1970.
ington, D.C., U.S. Government Printing Office,
U.S. Congress. Senate. Special Committee on
March 1971.
Aging. A Barrier-Free Environment for the
Elderly and the Handicapped: Hearings, Pts.
OTHER SUGGESTED BIBLIOGRAPHIES
1-3, Oct 18-20, 1971. 92nd Congress, first
session, Washington, D.C., U.S. Government
U.S. Department of Transportation, Office of
Printing Office, 1972, 3 pts., 207 pp.
Administrative Operations, Transportation
U.S. Congress. Senate. Special Committee on
for the Handicapped, Selected References,
Aging. Older Americans and Transportation:
Bibliographic List No. 8, Annotated, Wash-
A Crisis in Mobility. Report No. 91-1520,
ington, D.C., April, 1975.
14
U.S. Department of Transportation, Urban
U.S. Department of Transportation, Urban Mass
Mass Transportation Administration, Trans-
Transportation Administration, Transporta-
portation for the Elderly, bibliography by
tion for the Handicapped, bibliography by
Patricia Cass.
Patricia Cass.
15
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
RESEARCH
Awareness Paper Prepared By
Jean K. Weston, Ph.D., M.D.
Adjunct Professor of Clinical Engineering
George Washington University
School of Medicine
Washington, D.C.
Pub. WHC -- 14
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following individual who contributed significantly to this document:
Samuel J. Keith, M.D.
Assistant Chief, Center for Studies of Schizophrenia
National Institute of Mental Health
Rockville, Maryland
This Awareness Paper was prepared by a biomedical scientist to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This paper was not intended to be all-inclusive; but
was designed to stimulate discussions.
TABLE OF CONTENTS
Page
Introduction
1
State of the Art Research
3
Research Primarily Devoted to the Nervous System
5
General Commentary
5
Potential Causes of Injury to the Nervous System
6
Ongoing Nervous System Research
7
Mental Retardation
7
Mental Illness and Disability
8
Recommendations
9
Summary
9
INTRODUCTION
proven performance in nearly all aspects of our
existence, research is looked upon by our
Definition
society as the solution to many of our problems.
Who is handicapped? And what kinds of
Definition of Research
handicapped conditions exist? Most people,
when asked these questions, would point to the
What is research? Research is anything which
more obvious and severe physical and mental
produces and develops knowledge. "Pure" re-
handicaps such as blindness, deafness, stroke,
search or "basic" research observes, develops,
and similar debilitating conditions. Upon further
and studies facts and draws inferences or con-
reflection, they would identify other handicaps
clusions from such studies. On such bases,
where the individual exhibits some degree of
hypotheses are developed and subjected to
physical helplessness and is thereby dependent
experimental attack, ideally through application
upon others for his survival and well being.
of the "scientific method," the essence of which
A more inclusive-possibly too inclusive-
is to protocol and conduct experiments where
definition would be to consider anyone handi-
but one variable at a time is carefully examined.
capped who, through injury, disease or any
"Applied" research, or "targeted" research is
other cause, is unable to, or prevented from
considered to involve the use of scientific
realizing his full potential in our society.
experimental methodology directed at solving a
With this latter definition in mind, it is clear
specific problem, for example, the development
that the numbers of handicapped individuals are
of a poliomyelitis vaccine.
infinitely larger than one would at first imagine
The important, well-known and widely appre-
to be the case. It is evident that it is in society's
ciated facts are that many health problems have
interest to prevent, to cure or to ameliorate as
been solved to variable degrees by a proper and
completely as possible all human handicaps.
effective mix of basic and applied research. They
are, in practice, mutually complementary, not
Problem
antagonistic or mutually exclusive. And polio-
myelitis is perhaps the most striking and well
The problem is: how can society best and
known health problem solved by a mix of the
most expeditiously prevent, cure, and ameliorate
two kinds of research in modern times.
all handicaps which afflict our citizens? To the
degree that this can be done, there should be
Historical View of Research
fewer and fewer handicapped citizens who are
as it Relates to a Handicapping
not fully productive, self-supporting and a part
Disease-Poliomyelitis
of the mainstream of society.
Since a large segment of society has but
Using poliomyelitis as an example, it would
relatively recently embraced the concept that all
be useful to consider it historically.
people have a "right" to good health and the
For several generations poliomyelitis was
government, by legislation has committed sub-
recognized descriptively, its cause unknown, no
stantial resources to fulfilling that right, it
curative-or much ameliorative-treatment avail-
appears that they are aiming to solve the
able, and mankind resignedly accepted it as an
problem of all handicapped-since any handicap
affliction visited by God on man-as they did so
is likely to be caused by or related to impaired
many other handicapping diseases.
health to some degree.
Until biomedical researchers both pure and
applied, recognized bacteria and viruses as being
Solution of the Problem
related to disease, and could identify the various
kinds of viruses and had devised means to
Looking to the future-and in view of some
propagate them in pure line strains, little prog-
facets of the total problem of the handicapped
ress could be made in diagnosis, ameliorative
having been solved in the recent past, poliomye-
therapy, cure or prevention. Nevertheless, ap-
litis, for example-the importance of scientific
plied researchers during this period did produce
research must loom ever larger in any plan
useful, life-preserving methodologies like the
designed to make inroads on the problems
"iron lung," so essential in maintaining life in
presented by the handicapped. Because of its
those afflicted where the virus had attacked and
1
destroyed the nerve cell centers in the brain and
regardless of the amount of financing and/or the
spinal cord which controlled breathing.
human expertise that might have been deployed.
Similarly, until animal models of the disease
could be discovered and developed so that the
B. Research Competence
disease could be studied scientifically under
Obviously, research progress of any sort, all
controlled conditions, progress was slow and
other things being equal, is also dependent upon
labored. In short, once the cause was estab-
sufficient numbers of trained research personnel,
lished, further research was needed, both basic
provided with appropriate facilities and support.
and applied, to develop appropriate methodolo-
Being human, highly motivated, and desiring to
gies that promised to be effective in man either
visualize accomplishment from their efforts,
on a risk-benefit basis or on a cost-effective
they tend to enter those fields where interesting
basis, or both.
scientific findings are emerging, especially those
Finally, when a certain stage had been
having implications for practical applications.
reached by research studies (largely in animals)
Enders and Weller provided much of the basic
and a thoughtful consideration and integration
research necessary to conquer polio; Dr. Jonas
of the total available human information carried
Salk and the pharmaceutical industry, the ap-
out, at that point in time, only a human trial
plied research. Both were necessary and utilized
could provide a definitive answer. This involved
interchangeably to solve the problem of curing
education, decision making and the cooperative
poliomyelitis by simply preventing it.
support of leaders in science, medicine, industry
and government, together with public health
C. Methodology
education to enlist public cooperation and
Another ingredient for successful research is
understanding. The rest of the story is well
the availability of sophisticated methods. With-
known; the field trials were successfully
out the availability of the monkey safety test
mounted and carried out; the original killed
procedures dependent upon the known histo-
vaccine proven effective; widespread immuniza-
pathological characteristics of poliomyelitis in
tion programs subsequently carried out over
the rhesus monkey and the known techniques
several years; improved vaccines developed; and
for handling the monkey in large numbers in the
the disease was eradicated for all practical
laboratory, the development of the vaccine
purposes. But the virus continues to exist-so
could have been materially delayed. This can
immunization and public health education must
also be said of the methodology developed for
continue to maintain the basic disease under
growing polio virus in quantity on monkey
control to the degree it is. If this be done,
kidney tissue in tissue culture.
human handicaps from this source, at least, no
longer can or will develop. All this research and
D. Financial Support
development was costly, but the benefits have
In retrospect, little progress would have been
undoubtedly been well worth the cost involved.
made on polio research had not appropriate
funding been available over a period of many
Basic Concepts Relating to
years or had it not been expended relatively
Research Likely to Benefit
rapidly and liberally when the state of the art so
the Handicapped
warranted. Interestingly, the reason for this was
the tremendous success of the March of Dimes
A. Time-Frame
in raising funds from public contributions.
It is important to understand that research
Funds were obtained in sufficient amounts so
progress is necessarily time-frame dependent.
they were able, as needed, to support those
Until the knowledge time-frame existed where
research activities which seemed pertinent and
the causative agent of poliomyelitis had been
necessary to be carried out in order that ongoing
scientifically and conclusively demonstrated,
research progress towards their objective might
little further progress could have been made,
be made. It should be kept in mind that this
development was largely supported by such
public donations being diverted to support
*Dr. Jonas Salk was the first person to use his polio vaccine by
research in universities. The pharmaceutical in-
injection on himself, his wife and his three sons while Dr. Albert
dustry also became involved since it had exper-
Sabin was the first to swallow his polio vaccine.
tise in vaccine production and testing. This all
2
occurred before the day of large government
ment of the National Institutes of Health re-
appropriations for support of biomedical re-
capitulates the increased scientific and medical
search.
awareness of the relative degrees to which
Undoubtedly some funding supported non-
different types of diagnosed diseases resulted in
pertinently-productive research. Not all research
human handicaps. The sequential story of the
is necessarily productive toward the objective
varying appropriations to each of the Institutes
delineated in the time-frame involved-but who's
is another measure of the changing degrees of
to know how productive it might be in some
such awareness, interest and emphasis in amelio-
subsequent time-frame? The last is particularly
rating handicaps. It is difficult to measure how
true of basic research-research aimed at devel-
the public identifies research funding activity as
oping knowledge.
a force to ameliorate or eradicate specific human
In short, while money is of great importance
handicaps but surely many of the educational
when the time-frame, the trained and motivated
pamphlets, papers and comments from research-
personnel and the necessary methodologies are
ers and from the Institutes stress the importance
available and appropriately meshed, it cannot
of basic research in treating, curing, or prevent-
alone insure research productivity that will help
ing many, if not most human handicaps.
the handicapped.
In recent years, the public has expressed
disappointment and/or dissatisfaction with the
E. Interdisciplinary Research
rate at which demonstrable benefits to the
Although the virtues of interdisciplinary re-
handicapped have resulted from basic research.
search especially in the applied area where an
There has been articulated a desire for more
objective is clearly visible and outlined-seem
practical, more "applied," research that would
reasonably well appreciated today, the many
be more likely to result in benefits to the
areas where real research progress has been made
handicapped who need them. Possibly, respond-
faster by interdisciplinary research and which
ing to such criticism, the rate of government
have benefited the handicapped deserve recogni-
funding of research has decreased, (the need to
tion. It should be sufficient to refer to the
retrench has reached government, too) for most
development of relatively safe and effective drug
of the Institutes but, perhaps more importantly
products of many types by the pharmaceutical
and due largely to inflation, the research dollar
industry's multidisciplinary team "target" type
has had its purchasing power substantially re-
of research.
duced.
Such team research, aimed at a specific goal,
Furthermore, one detects the appearance of a
intermixed basic and applied research as needed
climate of anti-intellectualism related to research
to approach that goal. A few examples should
and scientific workers beginning to be seen
suffice: 1) A variety of vaccines and antibiotics
increasingly in our society, due possibly to the
controlling many handicapping infections, and,
attitudes of society developed during the Viet-
2) the phenothiazines, permitting many mental
nam era and to student unrest. This is disturbing
patients to return home from mental institutions
to research scientists and it should probably be
and become more nearly normal members of
more disturbing to leaders in universities, gov-
their families and communities-to say nothing
ernment, medicine, industry and the public. It
of sparking more biochemical research dealing
may inhibit some individuals from choosing
with brain functioning.
research as a career.
Another disturbing aspect of the foregoing,
STATE-OF-THE-ART
when one contemplates the research picture as it
OF RESEARCH DEALING
involves the handicapped, is public antagonism
WITH THE HANDICAPPED
to having clinical research carried out on
humans-but especially on children, potentially
General Commentary
pregnant women, prisoners and on persons living
in the third world countries. Despite the fact
Using the broad definition of handicap noted
that we have learned better how to do produc-
above, basic research dealing with a multiplicity
tive, controlled, relatively safe human research
of human health problems has received generous
trials requiring fewer subjects, fewer competent
public financial support, beginning in the late
clinicians want to become involved, partly be-
1940's. The story of the sequential establish-
cause of the added paper work involved but
3
perhaps more because of being viewed askance
scientific research was and what it might do for
by colleagues and the public, and the fear of
the handicapped, given adequate financial sup-
medicolegal liability. One cannot help but
port, competent leaders and no significant inter-
wonder whether this relatively recent and dis-
ference from the bureaucracy.
turbing facet of human research likely to help
Despite some discordant voices which ques-
the handicapped would not have substantially
tion the performance of NIH overall, there can
delayed the appearance of the polio vaccine had
be no question but that, through its leadership
it been in vogue at that time to anywhere near
and continuing support, large amounts of basic
the present degree. Clinical research was actively
knowledge, have been derived and that much of
encouraged during that period.
this is published where it is freely available to
It appears then, in summary, that research has
all. More may be classified or not yet ready for
been supported for nearly twenty-five years in
publication. Some may be in the files of the
increasing amounts until recently. This was
individual researchers in action, thus having
widely distributed to and through the National
limited immediate availability. The total volume
Institutes of Health intra-and extramural pro-
of published basic data, information and ideas
grams to support potentially productive, largely
presumably freely available to all, must indeed
basic research, world-wide, to a level never
be large. Surely, among all this published mate-
before seen in history. When one adds to that
rial may be many ideas, facts and concepts
the relatively large sums supporting additional
which, if extracted and made more readily
research, both basic and applied, in industry,
available to research workers generally, could
universities and other governmental research
spark interest in applied research programs to
activities, including aerospace research, surely
ameliorate the situation of some handicapped
there must have been made available substantial
persons. Competent researchers will have to take
amounts of useful basic knowledge. Further-
time to review, analyze, understand and derive
more, highly sophisticated methodologies and
ideas for future applied reearch most likely to be
large numbers of highly trained researchers have
practically productive to the handicapped out of
also been produced. Perhaps those who feel that
the available data base.
more useful research data exists in the total data
A simple listing of the National Institutes of
base and that, given proper direction, more
Health, the dates of their emergence and the
could be derived from the basic data now
scope of each Institute, together with the yearly
available more rapidly which could ameliorate
sums appropriated to support the research and
the conditions of the handicapped, do have a
training programs of each, can be generally and
case. Certainly, as an objective for the imme-
readily translated into the major areas where
diate future it is most worthy of consideration.
causes of human handicaps have been recognized
The major question is: "What are the obstacles
at different points in time. Such information is
that need to be removed and what positive
readily available on request from each Institute.
additional things are needed to promote this
The latest overall summary is especially instruc-
worthy objective?"
tive. Depending on one's background and
point of view, some fault with such a ranking of
Existing Research Establishment with
research areas needing support might well sur-
Particular Relationship to the
face overall.
National Institutes of Health
It is in these targeted areas where major
research both basic and applied, and training
The emergence of the National Institutes of
financial support has been given. To the degree
Health as the leading health research activity is
that practical accomplishment has been derived
acknowledged. That it has so emerged is a
in each of these areas, to just that degree the
significant accomplishment, not only of the NIH
handicapped have benefited.
research workers but to the research insights and
The National Cancer Institute for example,
abilities of the extra-governmental research
has spearheaded programs to promote early
establishment which has worked closely with
diagnosis leading to early cure, and to studies
NIH in every possible way. It is no less a
establishing the role of chemical agents in the
creditable accomplishment of those govern-
mental and community leaders who themselves
developed an awareness and insight into what
*Basic Data Relating to the National Institutes of Health (1975).
4
control and cure of cancer of certain types,
psychological problems. All require a variable
along with surgery and x-irradiation. Further-
degree of medical attention and continuing,
more, they have developed educational programs
close domiciliary care, education and treatment.
to help citizens at all levels better understand
Perhaps the most severe manifestation consistent
this handicapping area and how to suspect it and
with life is quadriplegia (paralysis of all four
what to do when they do suspect it.
limbs) and loss of function of the muscles
A number and variety of other publicly
controlling respiration. Obviously such patients
supported organizations, both at National
require medical care throughout the balance of
(American Cancer Society), Regional (Sloan
their lives, probably in a hospital or nursing
Kettering Institute for Cancer Research) and
home, and such care is tremendously expensive
local (Detroit Cancer Institute) levels have
on a per patient basis, far beyond the means of
worked cooperatively in both research and
any but the wealthy. The likelihood of progres-
educational endeavors dealing with cancer. They
sive mental depression and deterioration is great.
have accomplished a large amount of basic
In this connection, the variable deficits of the
research on nearly every aspect of cell biology to
less severely handicapped and the cost of their
understand more about abnormal cells, and
continuing care, education and rehabilitation
learning how they can be modified.
will still be very expensive on a per patient basis.
One could comment on areas to which each
Such costs can financially cripple most families.
National Institute devotes its efforts but space
By exhausting the total family assets, a handicap
will not permit. We noted the effectiveness with
to one member can indirectly handicap other
which the publicly supported March of Dimes
family members in good health physically by
mobilized funding to eliminate obstacles to
making it impossible for them to develop their
progress toward development of the polio vac-
potential through education and/or training.
cine. It should be noted that there has been
Their healthy psychosocial development can also
excellent cooperation between the public and
be grossly compromised. Thus, one handicapped
the government supported research agencies.
family member can be very expensive to care for
Actually, due to their extramural research
and rehabilitate to but a minimal degree and, in
programs which place all of them into contact
the process, produce other handicaps to his or
with most health research efforts world-wide, a
her immediate family. This is a further net loss
poll of each Institute would be a most effective
to society.
way of obtaining opinions as to research projects
With the foregoing in mind, one of the most
of greatest relevance and interest and those most
helpful, immediate contributions society can
worthy of future attention.
make to such a catastrophic handicap to a
Space limitations do not permit us to cover
family would be to assume much of the medical
much of the foregoing so, for the purposes of
care and rehabilitation costs involved. To some
this background review, a broad area will be
degree, it does. Interestingly, the March of
chosen for further discussion-an area where the
Dimes program realized this early in its develop-
author has had most familiarity and in which he
ment and helped to defray such costs to many
has published some research of his own-the
of those so afflicted. Our government is only
nervous system area.
now seriously considering passing legislation
designed to benefit such catastrophically expen-
RESEARCH PRIMARILY DEVOTED
sive handicaps to the family.
TO THE NERVOUS SYSTEM
While the general purpose and function of the
nervous system as the integrator of all body
General Commentary
functions (together with the endocrine system)
has been generally understood for many years,
Despite the fact that poliomyelitis is a viral
the complexities involved are only now being
infection, communicable from man to man and
reasonably well recognized to an increasing
from monkey to man and particularly prone to
degree. Interdisciplinary research has, more re-
attack children, the manifestations of this dis-
cently, cast much light on the underlying bio-
ease are expressed as infinitely variable deficits
chemical activities involved, the relationship of
of the human motor apparatus as well as, in
genetics to enzyme deficiencies underlying de-
some patients, the mental apparatus. Obviously,
fective brain functioning, the varieties of genetic
with such deficits there are apt to be associated
defects, congenital metabolic abnormalities and
5
birth defects and finally, a better appreciation of
desired, constantly changing, interrelated func-
the mosaic of neuro-endocrine functional activi-
tions of the human body.
ties involved in a normally functioning individ-
Interestingly, nerve fibers which are disrupted
ual. All these have more clearly appeared in the
within the spinal cord or brain do not re-
forefront of our understanding due to ongoing
generate, whereas those running in nerves do.
research especially in more recent times. Even
This has obvious implications for the relative
some frank psychiatric handicaps, among the
permanence of handicaps resulting from damage
most numerous and costly handicapping condi-
to the brain and spinal cord. Researchers
tions involving malfunctioning of the nervous
throughout the world continually study this
system-are beginning to yield interesting bio-
phenomenon. This is why a cure for full blown
chemical leads which, in due time, especially if
poliomyelitis was realized as an impossibility
exploited effectively, may markedly ameliorate,
and the research scales were tipped to find a
even cure or prevent certain psychoses.
vaccine to prevent the central nervous system
Because man has highly developed special
damage caused by the virus.
senses of vision and hearing, the special senses
that relate him to things at variable distances in
Potential Causes of Injury
his environment, their proper functioning are
to the Nervous System
most important for effective, normal brain
From the foregoing, it would make little
functioning and total effective adjustment of the
difference what the cause was but much differ-
individual to a constantly changing environment.
ence where the injury occured relative to the
This explains why blindness or deafness from
resulting handicap. The poliomyelitis virus, for
any cause are so severely handicapping to the
whatever selective reason, could kill these spe-
individual, especially if their onset occurs late in
cific nerve cells in the spinal cord which control
life when those individuals have learned to
the right arm, with a resulting, possible com-
depend on such information to most effectively
plete, paralysis that, so far as present knowledge
adjust to their environment.
tells us, might never significantly improve. A1-
Because man, supported against the forces of
ternatively, a growing tumor, an aneurismic
gravity on but two relatively spindly legs, is,
swelling of a near lying blood vessel, a knife
except when sitting or lying, in a state of most
thrust or bullet that would disrupt the larger
unstable equilibrium, the refinement of his
nerves in the neck and shoulder region, for
motor coordination must be superb. The com-
example, could also paralyze the right arm.
plexity of the nervous system integration in-
Here, however, prompt diagnosis and appropri-
volved is fantastic and occupies a substantial
ate surgical treatment, toegther with appropriate
portion of the total nervous system and also
rehabilitative therapy, could restore the arm to
utilizes the optic system input from the eyes and
normal or near-normal function. And this is the
the vestibular portion of the seventh, the cranial
result of past (and still ongoing) research, both
nerve, serving the complex but relatively minute
basic and applied. In such situations the total
vestibular (equilibratory) portion of the inner
past (and present) research productivity is con-
ear.
sistently resulting in more complete cures of
Furthermore, the parts of the body involved
such nerve damage all over the body, thus
in all the foregoing are at substantial distances
reducing the severity of the condition.
from each other and from the brain and spinal
Furthermore, a bacterial infection, in the
cord. These are all interrelated by nerve fibers,
blood stream could also differentially kill the
the outgrowths of nerve cells located mainly
nerve cell pool controlling the right arm with
within reasonable well charted areas within the
results similar to poliomyelitis or trauma. Rapid
brain or spinal cord or within even better
diagnosis and appropriate antibiotic therapy
charted, grossly recognizable nerves. These con-
both products of past research-today help keep
nect the brain and spinal cord to the specific
harm from these sources at a minimum.
kinds of cells in specific locations throughout
Alternatively, a variety of other causative
the body that must function in an interrelated
agents-pressure, chemical agents, a knife or a
manner to adjust the individual to his environ-
bullet could disrupt other groups of nerve fibers
ment, the gland cells and the muscle cells.
or nerve cell pools in the upper spinal cord or
Patterned discharges of nerve impulses over this
various places in the brain with similar effects on
nerve fiber network largely accomplish the
the right arm.
6
Hereditary defects could result in maldevelop-
major single Institute broadly concerned with
ment of the arms or a portion of them; these
research on the nervous system.
could be also the result of chemicals interfering
The Institute supports research on brain
with the orderly development of the human
tumors cause, prevention and cure. Since malig-
embryo, as thalidomide demonstrated. The posi-
nant tumors, cancer starting in many organs,
tive value of thalidomide as a sedative in other
shed cancerous cells that can and do set up
than pregnant women is well known. Recent
secondary tumors anywhere in the brain, they
research suggests that it is also valuable in
must study them to understand which types are
treating leprosy under some circumstances.
most apt to do this so that the medical
Chemical, and physical agents as well as
profession will be alerted to continually look for
infections, and congenital, or genetic abnormali-
these after the removal of tumors from a
ties can cause equally serious and varied handi-
primary site elsehwere, breast, skin, etc. The
caps to the individual-and at different periods
National Cancer Institute obviously has over-
in time. With such varied etiologies it is clear
lapping research interests here.
that wide support of research is necessary to aid
The Institute also supports research concern-
the handicapped.
ing spinal cord injuries of various kinds. Since
It should be equally obvious therefore, that
prompt diagnosis is important to early treatment
research, both pure and applied follows many
and cure, they support research in order to
pathways to improve our knowledge and under-
improve special care and survival. They spon-
standing of nervous system structure and func-
sored a Paraplegia Workshop not long ago to
tion to the overall benefit of the handicapped.
consider problems peculiar to spinal cord injury,
Research in this field should certainly be en-
especially bowel complications, bladder function
couraged.
control and the prevention, care and treatment
Furthermore, referring to the volume of
of bed sores. This is an example of their support
readily available basic information in the pub-
of education and training. Out of this workshop
lished literature, one could conclude that the
came the suggestion for the establishment of
nervous system portion of such might be the
centers for this condition in connection with
area to exhaustively review first to try to screen
existing hospital centers.
out ideas and concepts that would be most
Another most important research area sup-
likely to generate more applied research to
ported by NIH deals with all aspects of mental
ameliorate some handicaps and thereby help
retardation, ranging from minimal brain dys-
those involved more immediately. In our judg-
function in children to a variety of senile brain
ment, it is the nervous system field that should
dysfunctions. We need a better understanding of
be intensively studied, receive more research
basic neurological and perceptual processes.
funding and attract the attention of more
Basic research on the nervous system will lead
competent research workers, especially in the
to applied research findings that can be of
applied area, to be of practical benefit to the
practical importance to handicapped individuals.
handicapped.
Research is desperately needed on attention,
perception and memory.
Ongoing Nervous System Research
The foregoing gives a rather broad, view of
one most important research area affecting the
While specific National Institutes focus their
handicapped. It should be noted that research
attention on areas related to the nervous system,
activity in this area occurs broadly and generally
it is likely that all other Institutes also involve
and is supported financially by other sources-
themselves to some degree with the nervous
industry, academia, foundations, etc.
system in their research activities, because of its
all-pervading, integrative activities exerted on all
Mental Retardation
aspects of the human body.
Research in the field of mental retardation
The National Institute of Neurological and
has been addressed by the President's Commit-
Communicative Disorders and Stroke' is the
tee on Mental Retardation in its March 1976
*Brain Tumors and Spinal Cord Tumors. Hope Through Re-
*Spinal Cord Injury. Hope Through Research DHEW Publication
search Pub #197000-379-264, U.S. Government Printing
#(NIH) 72-160, PHS Publication, Health Information Series
Office.
#143.
7
Report to the President. The most severe forms
in only a minority of disorders, those associated
of mental retardation are the result of disorders
with infections, intoxicants, tumors, vascular
of the nervous system involving the brain usually
disease and changes due to the aging process.
occurring before birth. The causes of the dis-
On the other hand, research into brain func-
orders of the brain are divided into two groups,
tion in the fields of neurophysiology and bio-
those of genetic origin and those involving insult
chemistry has made enormous studies.
to the fetus.
In spite of great deficiencies in scientific
Man's knowledge of genetics and of environ-
knowledge, the last 30 years have seen a
mental hazards is still limited. However, enough
revolution in the methods and effects of psy-
is known now to provide a basis for markedly
chiatric treatment. A more humane and liberal
reducing the number of babies born with defec-
approach not only has lead to earlier and
tive mental and physical development.
consequently more effective treatment but also
Research is needed to advance knowledge in
has modified the forms of the illness themselves,
the field of mental retardation from the present
so that the gross abnormalities of behavior that
time through the year 2000. Vigorous action
once were the hallmark of mental illness and a
must also be taken in response to research
basis for classification are becoming rarities.
findings to reduce the incidence of mental
In no other field of health is the interplay of
retardation.
heredity, development and environment so
Specifically where the causes of mental retar-
necessary to understanding as in mental illness.
dation are understood, research should focus on
Social and environmental deprivation play a
prevention, early identification and ameliora-
crucial part in the origin and perpetuation of
tion. Basic research, targeted research, and re-
many forms of mental disability.
search on the behavioral and chemical environ-
There are many specific requirements for
ment are needed as well as new and improved
research in the mental health field. The National
techniques and approaches for this endeavor.
Institute of Mental Health is indeed constantly
In the field of mental retardation, a major
supporting research in many areas including
effort is needed to bring together separate
research on the causes of several types of mental
research findings systematically for more effec-
disability. To name these many areas would be
tive compilation, technical implementation and
beyond the scope of this paper.
application to prevention. In addition, there is
In the field of the psychoneuroses however,
an organizational need for an effective informa-
even though this is the most prevalent form of
tion center at the national level. The informa-
mental disorder, researchers have given them
tion center should identify and monitor all
little attention. Some experts see the neuroses as
current research related to prevention of mental
simply a milder form of mental illness than the
retardation in order to improve the flow of
psychoses. Others see the neuroses and the
information and its application in service de-
psychoses as entirely separate disorders. A most
livery.
compelling need is to clarify and standardize
The Report of the President's Task Force on
definitions of the neurotic disorders.
the Mentally Handicapped entitled "Action
Patients with organic psychosis-sometimes
Against Mental Disability, dated September
called organic brain syndrome-occupy about
1970, stated that the savings effected by thera-
one-fourth of the country's mental hospital
peutic and preventive measures discovered
beds; yet of all mental illnesses, this group of
through research soon outweigh expenditures.
disorders has been the most severely neglected
When even one serious case of mental retarded is
by researchers.
prevented the direct savings in terms of the cost
It has been estimated that one million Ameri-
of lifetime care are more than $100,000 and the
cans could be certified for admission to a mental
total savings close to three-quarters of a million
hospital because of senile mental disorders.
dollars.
However, many of the aged who are in mental
hospitals are actually not mentally ill; they have
Mental Illness and Disability
been sent to the hospital because there is no
Research into the causes of causes of mental
*Action Against Mental Disability-The Report of the Presi-
illness has shown that structural (anatomical)
dent's Task Force on the Mentally Handicapped, September
changes in the brain have so far been identified
1970.
8
other place for them to go. For most senile and
tors operating in all such research centers. Many
presenile psychosis, no effective drug or other
would demonstrate the interest and abilities. In
organic therapy exists. To what extent the
time this could provide the staffing structure of
paucity of therapies is the result of extremely
such Regional Centers.
little research activity is an important question.
One immediately thinks also of those severely
handicapped individuals with adequate intellec-
RECOMMENDATIONS
tual competence, who, with appropriate train-
ing, could do a most competent job of produc-
A. There should be no decrease of health
ing needed reviews of the literature in any
research affecting the handicapped. Rather,
research area. This would help in understanding
overall increases, at least consistent with infla-
the state of the art in a specific research area,
tionary increases which lower the purchasing
maintaining the literature, pointing out facts and
power of the research dollars, should be urged.
relationships where applied research might well
B. Basic research information already avail-
be stimulated. This effort would help to prevent
able warrants careful study for leads among the
unnecessary, and duplicative research in the
numerous publications available (as well as
future, thereby making the subsequent research
among additional research findings available
dollars more productive.
under the Freedom of Information Act). In such
an endeavor the following two concepts could
SUMMARY
well be of practical assistance:
1. Selected Veterans Administration (or
It is clear that handicapped individuals have
other) hospitals (some of which have already
(a) been aided in many ways by past research,
been productive in rehabilitating a variety of
(b) are being aided by present research, and
handicaps) might have a section declared a
(c) will be aided by future research.
Regional Research, Care, Education and Re-
It is equally clear that, with the large amount
habilitation Center for specific handicaps. Inso-
of published basic research readily available,
far as the non-veteran patient load is concerned,
appropriate use thereof will produce pertinent
this should be supported by tax money from the
ideas for more applied research that will help the
region concerned. Other such centers, similarly
handicapped sooner. This should be encouraged
supported, could be established in other hospital
in every way-but not at the expense of basic
or medical center facilities already competent in
research.
the areas involved. We suggest these be Regional
The utility of appropriately conceived Re-
to make it easier for the family and friends to
gional Centers, for Research, Education, Care,
keep in some personal contact; that the size of
Training and Rehabilitation is further explored
the region be flexible and related to the com-
as a pertinent, desirable, early development. The
munity of the specific handicap so that the
possible relation thereto of education and train-
spaces available can be readily filled, and that
ing programs to make of all those potentially
realistic staff needs can be filled with compe-
capable handicapped, competent and productive
tence.
researchers, pararesearchers and educators to be
2. As a logical and natural outgrowth
available to staff such centers, helping further to
thereof, handicapped individuals themselves,
forward the productivity of research, promoting
with appropriate potential abilities, should. be
the optimum welfare of the handicapped, is
given requisite education, training and experi-
pointed out and it is recommended that such
ence as researchers, para-researchers and educa-
programs be developed.
9
WHITE HOUSE CONFERENCE
ON HANDICAPPED INDIVIDUALS
ECONOMIC CONCERNS OF
HANDICAPPED PERSONS
Awareness Paper Prepared By
Monroe Berkowitz, Ph.D.
Jeffrey Rubin, Ph.D.
John D. Worral, Ph.D.
Pub. WHC -- 13
ACKNOWLEDGMENT
The White House Conference on Handicapped Individuals wishes to thank the
following individuals who have contributed significantly to this document:
Monroe Berkowitz, Ph.D.,
Professor of Economics and Director, Disability
and Health Economics Research Section,
Rutgers University
Jeffrey Rubin, Ph.D.,
Assistant Professor, Department of Economics,
Rutgers University
John S. Worral, Ph.D.,
Assistant Director, Disability
and Health Economics Research Section,
Rutgers University
This Awareness Paper was prepared by subject-matter experts to serve as one
resource for discussions leading to solutions of problems facing all individuals with
mental and physical handicaps. This Paper was not intended to be all-inclusive, but
was designed to stimulate discussions.
TABLE OF CONTENTS
Page
Economics and Handicapped Persons
Economics and the Mission of Conference
Employment, Transfers and Services
Plan of the Report
Definition and Counts
Programs and Support
Evaluation
Efficiency
Equity
Effectiveness and Adequacy
Some Evaluation Tools.
Program Evaluation and the Consumer
Benefit-Cost Analysis and Social Investment
Some Problems in the Application of Benefit-Cost Analysis
Political Decision-Making and Benefit-Cost Analysis
Benefits and Costs of the Federal-State Vocational
Rehabilitation Program
Federal-State Vocational Rehabilitation Program as a
Social Investment
Potential Legislation and Impact on Handicapped Persons
National Health Insurance
Negative Income Tax
Nationwide Temporary Disability Insurance and No-Fault
Insurance
Economic Issues for Conference Review
The Costs of Handicaps
Sharing the Costs
Expenditures and Choices
Summary and Conclusion
ECONOMICS AND HANDICAPPED PERSONS
fully fulfilling his goals. Many people with
handicaps have achieved dignity and independ-
ence (in some cases at great cost) but others
Economics and the Mission
have not. * For this latter group, it may be a
of the Conference
combination of public programs is required if
dignity and independence are to exist for all
The Conference is designed (1) to stimulate a
handicapped individuals. A substantial number
national assessment of problems faced by individ-
of programs designed to assist handicapped.
uals with physical or mental handicaps; (2)
individuals currently are in operation. Generally,
to generate a national awareness of these prob-
immediate goals of these programs are more
lems and to develop recommendations for legis-
specific than the ones designated in the mission
lative and administrative actions, and (3) to
statement of the conference. These specific
allow individuals with handicaps to live their
goals include the improvement of the employ-
lives independently, with dignity, and with
ment prospects for handicapped individuals, the
integration into community life.
transfer of income (in cash or in kind) to
As it considers policy recommendations de-
handicapped individuals, and the provision of
signed to achieve these objectives (particularly
special services.
number (3)), the participants at the Conference
Before we consider these goals in greater
will necessarily have to consider economic mat-
detail, it is important to discuss the economics
ters. Our intentions in this background issue
of the social context in which programs are
paper are to explore the basic conceptual aspects
begun, operated and changed. We recognize that
of an economic approach to the problems of
any public program that entails the use of
handicapped individuals and to present back-
redistribution of society's resources will not be
ground information, data, and analysis.
able to function for long unless a significant
Economics is the study of how society's
portion of the body politic is convinced of the
resources can best be utilized to make man
wisdom of the activity in question and are able
better off.* Given this broad definition, it is
to make their demands known. There are two
evident that there is no single economic concern
general circumstances that produce a situation
of the handicapped. Rather, several basic issues
where public support will most likely be forth-
are at the heart of any economic analysis of
coming. The bases for most of government
handicapped individuals.
intervention in the functioning of the private
In a free society, it is generally accepted that
sector economy are cases where private markets
each person is the best judge of his own well-
fail and situations where the distributional out-
being. One clear example of the validity of this
come of the private market is deemed undesirable.
notion is the ever-increasing participation of
For most of the areas where programs exist
handicapped individuals in the resolution of
for handicapped individuals either or both of
issues affecting them as exemplified by the
these conditions are present.
proportion of handicapped individuals at these
Even though some rational economic argument
conferences. Thus, for example, when we speak
can explain the establishment of the programs,
of dignity and independence, it is assumed that
additional effort is needed to evaluate the
each person is the best judge of how these
change programs, particularly if their effective-
goals are to be attained.
ness is in question. Because society is consistently
Everyone finds it difficult to achieve the de-
attempting to utilize its scarce resources to
sired outcomes they have decided to pursue. The
improve overall well-being (of which only a
difficulty a person faces in attaining their goals,
portion is derived through handicapped individ-
whether they be dignity and independence or
uals), it is important that the relative value of
some others, is magnified when a handicapping
programs for handicapped individuals be identi-
condition is present. Because the handicap,
fied and measured. Clearly the chances of handi-
almost by definition, limits the choices open to
capped individuals achieving their goals are
a person, the likelihood is that the handicapped
enhanced if they can establish that expenditures
person will find extra impediments to success-
made on their behalf are justified and thus
*It should be pointed out that great controversy surrounds the
* More on this distinction will be forthcoming in our chapter
empirical measurement of society's wellbeing.
on terminology.
1
provide the basis for continued and expended
How many obstacles beyond the control of
efforts on their behalf.
handicapped individuals be lessened? Are legal
regulatory actions or cash incentives the most
Employment, Transfers and Services
efficient means to reduce existing barriers?
What is the appropriate role for sheltered
workshops?
Dignity, independence and integration into
What are the costs and benefits and to whom
community life are fostered for most of us
do they accrue when various public instruments
through the means we use to fulfill various social
are utilized to extend employment of handi-
roles. These means include participation in the
capped individuals?
labor force, as well as participation in leisure
What are the policy changes that are necessary
pursuits and activities in the home. Even though
to stimulate and encourage employment?
all 215,000,000 of us are not in the labor force,
it is the output of a productive economy on
B. Transfers
which we all depend for our sustenance. Those
As noted above, some handicapped individ-
who are not actively labor force members
uals need not work to achieve their goals. Many
obtain a portion of society's output from some
will play an important role in the household and
combination of family members, past savings,
receive intrafamily transfers. Others will find
insurance, and public sector transfer and service
their financial problems partially overcome by
programs.
their behavior in the past which resulted in
savings and/or privately secured insurance pro-
A. Employment
tection against income losses.
Although. definitional complexities are enor-
The majority of handicapped individuals who
mous, many of those who are judged as "handi-
are unable to work have a stake in the vast array
capped" can successfully obtain employment
of public and private transfer programs now in
under the right circumstances. Others who are
operation. Historically, such programs have
handicapped are unable to overcome either the
arisen at different times prompted by quite
direct obstacle posed by their condition or the
dissimilar events. Workers' compensation is a
obstacles raised by factors outside their
product of the growing awareness of the toll of
immediate control including discrimination,
industrial injury in the 1900's. Most of the other
architectural and transportation barriers and lack
transfer programs are products of the New Deal
of job information or the necessary skills.
era and the Social Security Act, an event to
Employment is not a necessary condition for
which both income support and income main-
someone who seeks to live with dignity and
tenance programs can trace their origins. Those
independence and be integrated into community
whose handicaps result from the negligence of
life. Many nonhandicapped have achieved these
others are the recipient of payments made under
goals without jobs. Examples range from stu-
the tort system. And yet others with specific
dents, to the aged to housewives.
handicaps are able to benefit by programs which
Yet many handicapped individuals do not
have a more narrow concern for those with
wish to be excluded from the labor force. For
particular impairments. The White House Con-
many employment is the means to achieving the
ference has a unique opportunity to assess the
previously stated goals, and for others, employ-
total array of programs and make recommenda-
ment is an end in itself. Several questions
tions that will improve their functioning.
deserve careful consideration by the Conference
In any such assessment, one basic question
if the true nature of the role of employment in
that must not be overlooked is: How can trans-
the life of handicapped individuals is to be
fer payment programs remain fair to all while
understood and improvements made in their
achieving their stated objectives at the lowest
labor market status. These include:
possible administrative costs? Other questions
Which handicapped individuals are working
of concern are:
and how do they differ from the nonemployed
Do present programs replace lost income and
handicapped individuals?
alleviate poverty among handicapped individuals
How is the work behavior of other household
to the desired extent, i.e. are they adequate?
members affected by the presence of a handi-
What structural changes can be made to im-
capped member?
prove program operation?
2
How can transfer programs for handicapped
tation services. However, in the area of services,
individuals be integrated with a negative income
possibly the relationships are a bit more com-
tax plan?
plex. The public sector may provide certain
With the number of recipients and costs of
services financed out of general revenues or
these programs growing at a rapid rate, we must
specific earmarked taxes. Also the public sector
ask where the limits are:
may finance some services that are provided by
We will devote a portion of this background
the private sector. Thus, many of the services
paper to a description of the present structure
financed under the federal-state program of
and function of transfer programs. Program
vocational rehabilitation are, in fact, produced
rationale, level of financing in recent years, and
by the private sector and purchased by the
likely costs in the near future are also subjects
vocational rehabilitation agencies. Increasingly,
of analysis. We cannot be indifferent to rising
a good portion of the medical and health services
costs. In a free society, these transfers will con-
is financed under a public sector program, but
tinue only SO long as the body politic can be
for the most part, are provided in private hospi-
made to see the net value of additional incre-
tals by private physicians and other types of
ments of transfer payments.
health practitioners. We will present in the
background paper something of the relative im-
C. Services
portance of the sector divisions and some of the
While cash transfers and employment income
trends and possible combinations of the public
provide the basic sustenance to handicapped
and private sector that might be available in the
individuals, there is also a wide array of services
future.
available to them. Some of these services are
Along with the special nature of public-private
specialized and apply only to those with partic-
sector activity in the area of services, a number
ular impairments while others are available to all
of additional questions require consideration by
of handicapped individuals. Still other programs
Conference participants. These include:
are a part of general services offered to the pub-
Are the present services optimal? Do they
lic of which handicapped individuals are but one
produce the desired output at least cost or is
of the groups to take advantage of them.
there some better way to aid handicapped
These services include counseling and
individuals?
guidance, medical and health services, employ-
Are the benefits of the services distributed
ment services-including information about the
equitably among handicapped individuals? For
employment market, training services, physical
example, is the legislation requirement in the
adaptation of jobs, removal of architectural
federal-state vocational rehabilitation for pre-
barriers, communication barriers, affirmative
ference in services to the severely disabled
action programs, and programs designed to less-
appropriate?
sen discrimination against handicapped individ-
What is the best mechanism for establishing
uals. Additionally, there is the indirect benefit
priorities in how and for whom service dollars
to the handicapped that is the result of programs
should be spent?
of research. The research covers widely different
Given the importance of knowing how well
areas and deals with everything from develop-
services do what they do, we must ask how pro-
ment and testing of new prosthetic devices to
gram evaluation can best be conducted. Of
methods of social organization of rehabilitation
special interest will be the determination of and
programs.
incentives for provider agencies to do a better
A substantial amount of resources is devoted
job at evaluation.
to delivering these services to handicapped
A great number of questions have been raised
individuals. In later sections, we examine the
here and elsewhere. Below we provide some
aggregate expenditures on service programs. Also
essential background information that should be
special emphasis is given to the equity and effi-
utilized in answering at least a portion of these
ciency characteristics of the single most
queries. Additionally, we will present an econo-
significant nonmedical services program-the
mic interpretation of the facts and the use of
federal-state vocational rehabilitation program.
methods of economic analysis. Yet our purpose
Again, as in the cases of the employment and
in presenting information and analysis is not to
transfers, we find that the public and private
answer the questions posed (and whatever
sector interact to provide and produce rehabili-
others that are deemed appropriate) but to
3
provide sufficient material and data to provoke
In the following chapter we lay out the struc-
useful, stimulating and productive debate among
ture and functions of the present public and pri-
the Conference participants. It is in this way
vate mix of disability programs. Several reasons
that we can contribute the most to a Conference
for payments will be introduced and programs
that successfully accomplishes its mission.
will be classified accordingly. Estimates of the
aggregate expenditures will be presented and
Plan of the Report
some comments on the trends over time will also
be noted.
In the next section of the report, we will set
Although there are very good reasons for a
forth some basic definitions derived from
multiplicity of programs, the current structure is
scholars in the field. The use of terms among
so complex as to become unmanageable and
researchers, practitioners, and the public is
difficult to understand. By presenting this over-
sufficiently confused to require special consi-
view of programs, gaps and inconsistencies may
deration. Although nomenclature is not the im-
be more easily identified and remedied if deemed
portant thing, it will be shown that concepts are
appropriate. While it is important that these
of fundamental importance in the formulation
programs be satisfactorily integrated, there does
of rational policy.
not appear to be a good case for a single (or
In short, the following line of thought will
even a very few) program for the disabled.
be pursued. The current status of the people
As noted earlier, programs must face con-
who are the focus of this Conference stems from
tinued evaluation. In the next chapter we
any of several causes, each of which is essentially
concentrate on the methods of program evalua-
medical. Such pathological conditions may give
tion and show some examples of how economic
rise to what we shall call impairments, which in
principles retain their applicability in the dis-
turn may place certain limits on one or more of
ability context. It is essential that the competing
an individual's functions. If this series of circum-
demands for scarce resource by members of
stances leaves a person unable to perform his
other groups in society be acknowledged. The
normal social role, we will classify the person as
tools of evaluation are one of the means at
disabled. Thus, many Conference participants
society's disposal to put these different programs
although severely impaired and limited would
on some level of comparability.
not be classed as disabled.
An equally important basis for evaluation is
These terms are well accepted in survey and
that it can be used as a measure of program
other research work should be understood by
handicapped) interests. The recipients of services
Conference participants. Less agreement exists
place demands for better performance on pro-
on how the terms "handicap" and "handi-
grams. To objectively judge how well such
capping" and "handicapped" are to be construed
demands are being met, some notion of the
in light of the linguistic construct above. We
criteria of evaluation which would in effect
shall attempt to make some headway in reconcil-
mean a capacity to measure performance, must
ing the confusion that persists.
be presented.
Next we turn our efforts to a summary and
The previous sections have been devoted
explanation of surveys that aim at identifying
largely to descriptive matters. What remains
and counting the disabled. Surveys are valuable
is a discussion of policy alternatives and a
because they enable the researcher to maintain
final comment on what we believe to be the
a consistent set of definitions Such is not the
most significant items and options. that deserve
case when we turn to transfer and service pro-
a place on the Conference agenda.
grams which have their own, and often, different
Because of the nature of this paper and the
definitions of disability. We will discuss the
limitations of space, we will not present an ex-
resulting problems and suggest reasons for this
tended discussion on the implication for handi-
confusing approach to the provision of support
capped individuals of each of four major policy
for the disabled. Two major factors to be dis-
alternatives: negative income tax, national health
cussed are program objectives and the need for
insurance, nationwide temporary disability in-
specific eligibility criteria. The confusion in
surance, and no-fault insurance, We will discuss
defining, identifying, and counting the disabled
some of the likely first level impacts on handi-
is something that must not be ignored by the
capped individuals for each major program
Conference.
change.
4
Finally, we will draw all the facts, analysis, and
as we carve out concepts for purposes of count-
inferences together and present issues for debate.
ing the disabled or listing their characteristics.
We expect these to include but not to limited to:
We begin by viewing disability as the end re-
(1) the need for agreement on uniform concepts;
sult of a series of circumstances leading to an
(2) the significance of overall economic con-
inability to perform any of the major life
ditions on the status of handicapped individuals;
functions. The process begins with a disease or
(3) the need to measure the burden of handicaps
pathological condition which leads to an impair-
and ways to share the resulting costs between
ment of a "physiological, anatomical and/or
groups.
mental deviation. For example, the impairment
We expect that the Conference may wish
may be the loss of strength due to deteriorated
to pass a number of resolutions which neces-
muscle tissue or the loss of a limb. Each sug-
sarily must be phrased in a general way to
gests a deviation from standard biological struc-
accommodate the varying interests of the par-
ture or function. The impairment in turn may
ticipants. At the same time, if the recommenda-
cause some limitation in physical or mental
tions are to be effective, they must go beyond
functioning which may be responsible, when
the call for the elimination of architectural
considered with other factors, for a disability
barriers, discrimination in employment, higher
or an inability to perform in one's generally
levels of benefits and expended services. Accept-
recognized social role. Confusion is apparent as
ance of the resolutions and accomplishment of
attention is turned to determining where along
the Conference's mission will be facilitated if the
these spectrum the handicapped are.
recommendations could be coupled with some
"Handicap" is often defined as disadvantaged.
awareness of the financing, distributional, and
Certainly a disabled person meets this rather
other economic issues involved. It would be
simple notion. But there are surely many of the
beneficial if the Conference would recognize that
functionally limited-non-disabled who are also
incentives to employers to redesign jobs, the pro-
physically or mentally handicapped. Also, many
vision of general job information services, and
of the impaired who have no specific limitation
increased educational opportunities all have a
might be judged disadvantaged as a result of their
profound effect on the ability of handicapped
health. Someone who is unhealthy but is capable
individuals to participate in the labor force and
of performing the major physical functions would
each has a cost.
fall in this group. Epileptics who have only
In sum, we believe that the best way for the
minimal, if any, functional limitations may be
handicapped to achieve the goals set out in the
deemed handicapped. Someone with a pace-
mission statement of the Conference is to develop
maker may be able to function perfectly well
the mix of public and private support that will
but his apprehensions of a heart attack may put
limit the obstacles handicapped individuals face
him in the handicapped category.
while increasing the options from which they
These problems point up the broad interpreta-
have to choose. Not all the obstacles can be
tion often found for handicap. Until agreement
eliminated nor can the number of options ap-
can be reached on more specific usage of
proach infinity, yet full recognition of the costs
terminology we prefer the disability model
and benefits of alternative means of achieving
described above. One initial attempt to clarify
these ends will enable society to use its resources
these concepts from a particularly economic
more effectively in the future.
perspective has recently been suggested. Al-
though Culyer, unfortunately, interchanges dis-
DEFINITIONS AND COUNTS
ability and handicap, his general line of thought
is useful and worth commenting upon here.
He argues that handicap is a subjective concept
At times it appears that we all live in a
"Catch-22" world where the same person is
judged too disabled to receive rehabilitation
* See Saad Nagi, "Disability Concepts and Prevalance" paper
services from one program and not disabled
given at First Mary Switzer Memorial Seminar, Cleveland, Ohio,
enough to receive benefits from another. If
May 1975, for a more detailed discussion of the distinctions.
programs cannot agree on a single concept of
* See A.J. Culyer, "Economics, Social Policy and Disability" in
the handicapped or the disabled it should not
D. Lees and J. Shaw, eds., Impairment, Disability and Handi-
be surprising to see the same cloudiness prevail
cap: A Multidisciplinary View, Heinemann Educational Books,
London, England, 1974.
5
and depends upon how society views the individ-
lation between 18 and 64 were disabled for
ual in question. The determination as to whether
longer than six months in 1966. The total in-
or not someone is handicapped depends on a
cluded 6.1 million persons (5.9% of the popula-
social assessment of the impact of the impair-
tion) classified as severely disabled, i.e. unable
ment on a person's welfare. The greater the
to work regularly or unable to work at all.
impairment affects a person's options or life
Of this group 3.7 million or 3.6% of the popula-
chances, the greater the cost to the individual.
tion were unable to work at all. Five million
When these costs fall beyond the normal range of
persons (4.9% of the population) were occupa-
costs the individual is disadvantaged or handi-
tionally disabled, defined as being unable to
capped.
work at the job held prior to onset or unable to
If we maintain the definition of disability
work full-time; and 6.6 million persons (6.4% of
discussed above it is possible to bet some idea
the population) had secondary work limitations,
as to where this view of handicap falls. Perhaps
defined as able to work full-time regularly, but
everyone with an impariment is, to some degree,
with limitations in the kind or amount of work
handicapped, for at least some period of time.
they could perform.
The severity of the handicap may be viewed as
While it is true that these concepts may not
varying with the costs which in turn have, for
fully capture the population with which the
the most part, a direct relationship to the series
participants of this Conference are concerned,
of circumstances concluding with a disability.
it is true that the notion of disability used in
An impairment may have only minor impact
the Social Security survey is rather inclusive.
on a person's options, whereas a functional
Therefore it will prove valuable to explore
limitation will likely more severely limit options
somewhat more deeply the characteristics of
and finally a disability may be even more
the disabled.
"costly." Even within disability it is possible
In the model presented above, the nature
to consider many as more severely disabled
and severity of the physical and medical condi-
than others, possibly by reference to chances
tion is greatly responsible for determining
for successful rehabilitation or by considering
whether or not someone becomes disabled. Also,
whether they are disabled in more than one
the conditions tell something about the chances
activity. The size of the costs and the implied
of preventing the disability as well as providing
severity of the handicap have a great influence
useful information regarding the appropriate
on the form programs take.
methods to reduce the cost burden of the
We begin now to lóok at the results of several
handicapped. For these reasons we begin
surveys of the disabled population. The first set
describing the characteristics of the disabled by
of results we present are derived from reports by
summarizing the findings of the survey as
the Social Security Administration concerning
regards the disabling conditions found among
the data generated by the Social Security Survey
the disabled.*
of the Disabled: 1966. For survey purposes
Among the disabled, musculo-skeletal dis-
disability was defined "as a limitation in the kind
orders (diseases of the bones and organis of
or amount of work (or housework) resulting from
movement) and circulatory conditions were re-
a chronic health condition or impairment lasting
ported as the major disabling condition in
three or more months. It must be stressed that
30.9% and 24.8% of the cases, respectively.
only the work-housework function is examined.
The majority of the remaining disabled reported
Thus, those able to work but limited in other
conditions in one of the following four groups:
pursuits or aspects of life are not incorporated
allergic disorders (10.8%), disorders of the diges-
in this study. The survey found that 17.8
tive system (7.2%), mental disorders (6.3%) and
million people of the noninstitutionalized popu-
nervous system disorders (5.2%).
If we examine the disability rates per 1,000
* The survey findings are found in a series of reports published
persons in the noninstitutionalized population,
by the SSA in the late 1960's and early 1970's.
Lawrence D. Haber, "Identifying the Disabled: Concepts and
Methods in the Measurement of Disability," Report No. 1
*We summarize the findings presented in Lawrence D. Haber,
from Social Security Survey of the Disabled: 1966, U.S.
"Epidemiological Factors in Disability: I. Major Disabling
Department of HEW, SSA Office of Research and Statistics,
Conditions," Report No. 6 from Social Security Survey of
December 1967, p. 6. Results are reported for individuals
the Disabled: 1966, U.S. Department of HEW, SSA, Office of
disabled longer than six months.
Research and Statistics, February, 1969.
6
we find that these rates grow rapidly by age.
acute or chronic condition.' For our purposes,
For example, the rate for circulatory disorders
the most significant classification is between
goes from 17.1 for those aged 18 to 44 to 57.9
levels of chronic activity limitation. These three
for those 45 to 54 to 120.7 for those between
categories are:
55 and 64. The overall rate was 172.2 with over-
all rates by age groups (in the same order as above)
1. Persons unable to carry on major activity
being 102.1, 231.1 and 361.6. The growth in
for their group. In this context major activity
the disability rate "was largely due to increases
refers to ability to work, keep house, or engage
in the disabling effect of the conditions. but
in school or preschool activities;
in some cases (arthiritis and heart disease) the
2. Persons limited in amount or kind of major
rate change is a result of higher prevalence rates.
activity performed;
In general, Haber found that age rather than
3. Persons not limited in major activity but
major disabling condition was a better predictor
otherwise limited.
of the likelihood of disability.
Perhaps more important than the disabling con-
On the basis of these definitions the NHS
dition in the assessment of a health problem is
identified 12.7% of the civilian, noninstitu-
the impact of this impairment on the individual's
tionalized population (all ages) as having some
capacity to perform certain functions. Thus,
form of activity limitation as a result of chronic
even though a person may be impaired he may
diseases or impairment in 1972. The breakdown
be able to do everything he could before his con-
among the degrees of limitation are: 1) Unable
dition changed. We summarize below the findings
to carry on major activity, 3% (6.0 million);
reported by Haber on functional capacity limita-
2) Limited in amount or kind of major activity,
tions.t
6.6% (13.6 million); 3) Limited in other activi-
One purpose of obtaining information on
ties, 3.1% (6.3 million).
activities such as physical capacity, mobility,
Along with the data on activity limitations,
self-care and sensory capacity is to determine how
additional information was collected on individ-
the inability to perform certain functions affects
uals with mobility limitations. In 1972, 3.2% of
work and daily living performance. Haber notes:
the population had a chronic mobility limitation
"Limitations in the ability to perform any of
and 92.3% of these had an activity limitation.
these activities would generally constitute some
As with activity limitations the percentage of
barrier or handicap to effective role perform-
the population with a mobility limitation rises
ance."# It was not possible to assess all the
with age, to the point where 17.6% of those 65
limitations that arise from impairments. A num-
and over had a mobility limitation due to a
ber of the disabled show no limitation as
chronic condition.
measured by the survey instrument. In the
If we turn to the chronic condition causing
survey 72.8% of the disabled had an activity
the activity limitation, heart conditions are the
limitation such as walking, lifting and using
leading factor in 13.4% of the cases, arthritis
stairs, only 7.1% of the disabled needed help
and rheumatism, 11.2%, impairments of lower
with personal care activities, 10.4% had mobility
extremities and hips, 5.9% and impairments
limitations and 23.0% had vision, hearing or
of back or spine, 5.8%. For mobility limitations,
speech limitations. In general the data on limita-
arthritis and rheumatism account for 22.2% of
tions was a much better predictor of severity
the cases with impairments of lower extremities
of disability than impairments.
and hips accounting for 10.8%, heart conditions
A second source of data on the disabled
8.7%, cerebrovascular disease 6.3% and paralysis
population is the National Health Survey. Dis-
4.4%.
ability is defined as "any temporary or long-term
Additional information on the disabled is
reduction of a person's activity as a result of an
available in other Social Security publications as
well as in other reports from the National
"Ibid., p. 10.
TL.D. Haber, "The Epidemiology of Disability: II. The Measure-
Health Survey. Also, the Bureau of the Census
ment of Functional Capacity Limitations," Report No. 10
from Social Security Survey of the Disabled: 1966: U.S.
*See for example Charles S. Wilder, "Limitation of Activity and
Department of HEW, SSA, Office of Research and Statistics,
Mobility Due to Chronic Conditions," Data from the National
July, 1970.
Health Survey, Series 10, No. 96, U.S. Department of HEW
Ibid., p. 3.
Washington, D.C. (November, 1974), p. 51.
7
surveyed the disabled population in 1970 and
program that guarantees the continuation of a
Saad Nagi of Ohio State is preparing the results
portion of the person's income stream in the
of yet another survey of the disabled. The
event of certain contingencies; in our case the
Social Security Administration has several new
chance of a health condition leading to a
surveys underway or completed including one
disability. Eligibility is directly contingent to
on the recently disabled. Finally there are
contributing status and their essential purpose is
numerous larger surveys where the disabled are
to maintain the income of those whose income
but a subset of the population allowing for
stream is interrupted due to disability. In part
excellent comparative studies. Two of the major
also they provide a floor below which income is
works in this category are the Michigan Panel
not allowed to fall. The Social Security Disabil-
Study of Income Dynamics and the Ohio State
ity program, Workers' Compensation, the several
National Longitudinal Surveys.
state and railroad temporary disability plans and
Medicare are some of the major programs classed
as social insurance.*
PROGRAMS AND SUPPORT
In the second group of programs payments
are based on not only disability but veteran
At present a substantial amount of society's
status as well. The major programs include the
resources are devoted to aiding handicapped
veterans' compensation and pension programs
individuals. A variety of programs have been
along with the medical and various support
developed to funnel both the cash and services
services that are available.
to handicapped individuals. In this section we
The third group we label as risk aversion. It
review the types of assistance available, the basis
includes group and privately secured insurance
for their existence, the specific nature of several
including the formal sick leave and disability
major programs and estimates of the aggregate
provisions of the retirement agreement between
expenditures.
employer and employee. Payments are made for
Numerous public and private programs con-
many of the same contingencies as in the social
verge in their support of the disabled. Some
insurances, but the individual must have antici-
programs such as the Social Security Disability
Insurance program (DI), SSI, Workers' Compen-
pated the contingency and made premium pay-
ments because of the desire to spread the risk. In
sation and Vocational Rehabilitation serve only
the disabled. Other programs, including for
certain programs, the payments of premiums are
made on his behalf while in either case, the
example food stamps, general manpower train-
payments are made voluntarily and without
ing plans, AFDC, and unemployment compensa-
governmental compulsion. An important aspect
tion, serve the disabled as well as the non-
of risk aversion programs is that they are
disabled.
We want to classify both sets of programs in
responsible for a good deal of the difference in
treatment accorded the disabled. This is one area
several ways. First, we classify them according
to the rationale or reason for payments.* The
where income, tastes for risk and pre-disability
situation each enter into how the cost burden of
bewildering number and variety of programs
begins to make more sense as we realize each
a handicap is shared.
exists for different reasons. We do not argue that
In the income support category, we include
the structure is wholly rational and that it
those programs designed specifically toward
cannot be improved, but only want to recognize
alleviating the poverty-stricken group of handi-
that programs have different announced reasons
capped persons. These programs provide a last
for being.
In the first category are the various social
*We note here that much of the aggregate data to follow
insurances, the government plans under which
includes short-term disabled, a group not often deemed
individuals are required to contribute to a
handicapped since their condition will disappear over time.
Thus as an estimate of expenditures on the long-term handi-
capped our numbers are clearly an overestimate. The area
*More detailed information on these matters can be found in
where this problem is most significant is in health care
Berkowitz and Johnson, "Toward an Economics of Disability:
programs where we sought to include all non-routine expendi-
The Magnitude and Structure of Transfer and Medical Costs,"
tures. In this way we include most who receive care and are
Journal of Human Resources, 5 (Summer 1970) and in M.
unable to work (i.e. disabled). But a narrower focus on only
Berkowitz, J. Rubin and J. Worrall, An Economic Evaluation of
those who could expect to have their impairment last a long
Disability Programs, forthcoming.
period would generate lower figures.
8
resort for those who "fall through the cracks"
were utilized, the total would remain in the area
and miss the eligibility conditions of other
of $48 billion, certainly not a paltry sum.
programs. Income support programs include
Transfers accounted for $34.2 billion, with
both cash support, such as SSI and AFDC, and
somewhat less than a third being in the private
in-kind plans such as food stamps and Medi-
sector. The private sector transfers include sick
caid.*
leave, disability insurance payments, and auto-
A person's disabling condition may be held to
mobile, malpractice and other bodily injury
be the fault of others. In such cases the
plans. Services accounted for the remaining $2.3
indemnity group of "programs" provides for
billion. The public share was 63% or $52.3
payments. These are largely private sector pay-
billion.
ments arising out of tort cases where negligence
If we turn to how the money was spent in the
can be shown. Automobile, malpractice and
different program categories some interesting
personal injury cases are the prominent exam-
results are apparent. In 1973 the percentage
ples. Growing dissatisfaction with this group has
breakdown was as follows: risk aversion-35%;
led to the enactment of no-fault legislation.
veteran-status-10%; social insurance-23.6%;
A final group of other programs is a potpourri
indemnity-7.1%; income support-22.6%; and
of direct service programs and largely defies
other-1.7%. Over 80% of all the expenditures
classification as to reason for payment. The
are in the risk aversion, social insurance and
most significant of the programs here is the
income support categories.
federal-state vocational rehabilitation program
If we cross-classify the results we find much
which is based upon a human capital investment
less variation across categories in the cash
theory.
transfers than in the medical payments. The
We have sought to aggregate expenditures
results show that insurance or risk aversion and
related to the disabled including short-term as
income support each are a much larger relative
well as long-term disabled although we were able
share of medical support, 47% and 27%, respec-
to identify over 80 programs, we have undoubt-
tively, than they are of transfers, 24% and 15%,
edly overlooked some, particularly in the state-
respectively. On the other hand, status and
local and private direct service category. Our
indemnity are significantly better represented in
look at these areas leads us to suggest the figures
transfers, 15% and 17%, than they are in the
reported below, while an understatement of the
medical group, 6% and 0%, respectively.
total, represent a lower bound not far from the
Before examining the nature of several major
"correct" figure.
public programs, we turn to considering how the
In sum, we estimate the public and private
transfer and medical expenditure levels changed
expenditure in 1973 on the disabled to be $83.1
between 1967 and 1973. Substantial growth is
billion, a large figure indeed. Slightly over half
apparent and is the result of several factors.
of this figure or $46.6 billion is in the form of
These include the growing numbers of disabled
medical care or payments. For example, a
people, liberalized eligibility requirements, and
two-week hospital stay, paid for by an insurance
increases in aid per recipient. If we hold con-
carrier, is included because the person clearly
stant that portion of the rise accounted for
met the definition of disability, that is an
purely by inflation, we still find that transfer
inability to perform in his normal social role.
and medical expenditures rose by 54% between
Yet, even if only a quarter of the payments
1967 and 1973; the transfers by 47% and the
would be classed under disability or the handi-
medical payments by 59%. Each of these trends
capped if a stricter long-term based definition
along with the basic breakdowns by type and
nature of program provides valuable descriptive
*The basic criterion that was used to determine whether or not
information that can be used in debating the
to allocate a portion of expenditures for those programs where
priority areas for increased spending. To get a
disability was not a direct eligibility factor was whether or not
better idea of the mechanisms by which much of
the disability resulted in the condition on which eligibility
this money was placed in the hands or spent on
depended. Thus a family receiving food stamps with a disabled
behalf of the disabled, we shall summarize the
member in the household would theoretically be included in
the allocation of a part of the food stamp budget to disability.
key components of several major programs. We
Of course the existence of cases where the family would be
proceed rather succinctly, assuming the partici-
receiving support regardless of the disability means our estimate
pants have at least some general knowledge and
is slightly inflated.
familiarity with most of the programs.
9
The single major public transfer program for
tax rate. An alternative, using general revenue
the disabled is the Social Security Disability
taxes, has been suggested but not yet imple-
Insurance program. Payments are made to cov-
mented. A positive aspect of such an approach
ered persons who have a physical or mental
would be the decreased reliance on a regressive
impairment that has lasted, or is expected to
payroll tax and a shift to the progressive federal
last, 12 months or more and who, as a result of
tax structure. But a shift of this nature would
this impairment, are unable to engage in substan-
alter the basic social insurance character of the
tial gainful employment. There is also a program
program, something advocates of the payroll tax
of payments to widows of covered workers who
approach believe will weaken support for the
become disabled within seven years after the
program.
death of the covered workers.
The determination of disability is a complex
Payments are made out of a special DI trust
process allowing for several appeals before a
fund with money raised through a payroll tax of
person can finally be denied benefits. The rate
equal amounts on employers and employees.
of reversal by administrative law judges has been
The trust fund also supports vocational rehabili-
large and a subject of some concern. Efforts are
tation efforts for those recipients for whom
being made to be more specific as to how
there is a chance of being restored to the labor
occupation, residual skills, available jobs and
force. Recent studies have shown that these
other factors should enter into disability deter-
efforts lead to a reduction in trust fund outlays
mination.* The Conference participants should
and an increase in payroll tax contributions
give some thought to the appropriate means of
which together are somewhat larger than the
defining disability with an eye toward the cost
cost of providing services.
impact of either liberalization or further restric-
In fiscal 1975 cash benefits from the DI trust
tions of the current approach. A particular
fund totalled 47.6 billion, a rather large increase
concern will be what happens to and what
from the 46.2 billion that was expended the
assistance is available to the denied DI appli-
prior year. There were 3.9 million beneficiaries
cants. An adequate backup income support
as of December 1974 and this had grown to 4.2
system, possibly a negative income tax, would
million as of August 1975. With payments in
go a long way in allowing DI administrators, to
latter months totalling $783.5 million we find
maintain a strict interpretation of disability.
an average payment of approximately $187 a
The new Supplemental Security Income (SSI)
month.* The average benefit awarded during
program, effective as of January 1, 1974, in-
September 1975 was $241.37 per month for a
volves direct cash payments to the aged, blind or
disabled worker.
totally disabled person who meets certain in-
Two difficulties the program faces are its
come and resource requirements.* The program
long-run financial status and the administration
is basically one where the federal government
of the disability determination process. At the
provides a minimum support that states may
current rate of growth for expenditures and
supplement. SSI recipients who would have been
receipts the trust fund will have to draw down
better off under AB, APTD and OAA must be
on its reserves, a result that signals the need for a
supplemented by the states but new eligibles
change. One current proposal would raise the
*Three sources of information and analysis of the appeals
process are Dixon, Social Security Disability and Mass Justice,
*Data and information sources for DI and other programs are
Praeger, New York, 1973; The Committee Staff Report on the
too numerous to list. Some major sources are the monthly
Disability Insurance Program, House Ways and Means Commit-
Social Security Bulletin along with its Annual Statistical
tee, July 1974, U.S. Government Printing Office, Washington,
D. C.; and Research and Statistics Notes, HEW, SSA, Office of
Supplement, The Catalog of Federal Domestic Assistance, the
Research and Statistics, "Appeal of Disability Decisions," Note
Appendix to the U.S. Budget, Veterans' Administration
No. 3-March 1975.
Annual Report, Life Insurance Fact Book, Sourcebook of
Health Insurance Data and numerous books, articles and
*SSI is reviewed in the following two sources: The New
Congressional reports. One particularly valuable source is the
Supplemental Security Income Program-Impact on Current
Directory of Federal Programs for the Handicapped, compiled
Benefits and Un-Resolved Issues, Paper No. 10-Studies in
by Edward Klebe which can be found in the Congressional
Public Welfare, Staff Study for Subcommittee on Fiscal Policy
Record-Senate,, January 29, 1974, S613-S621. Also see
of Joint Economic Committee, October 1973; and James R.
Handbook of Public Income Transfer Programs, Paper No. 2 in
Storey, "The New Supplemental Security Income-Implications
Studies in Public Welfare, Staff Study for Subcommittee on
for Other Benefit Programs," Policy Sciences, V.6, 1975,
Fiscal Policy of the Joint Economic Committee, October 1972.
pp. 359-374.
10
need not be SO covered. The federal government
find employment, where feasible. Thus, the rate
will administer the supplements in the states
at which the SSI payment is reduced as income
wish.
goes up will tend to encourage or discourage,
In September 1975, the total federal pay-
depending on the rate, SSI recipients from
ments plus the federally administered state
seeking employment. The treatment of unearned
supplementation (29 states plus the District of
income, for example, from DI or the Veterans'
Columbia have opted for federal administration
Compensation program, should be carefully
of their supplements) totalled $263.2 million for
structured SO that changes in one will not be
the disabled and $16.7 million for the blind.
offset by equal declines in SSI leaving the person
State administered supplementation for July
no better off.
1975 (the latest month for which data is
Two major programs are the Veterans' Com-
available) was $6.3 million for the disabled and
pensation and Pension plans. The former covers
$296,000 for the blind. The number of persons
service-connected disability while the latter is
receiving federally administered payments as of
directed toward veterans with non-service con-
September 1975 were 1,854,545 disabled and
nected disability. The calculation of support in
73,875 blind.
the compensation program is based on percen-
The average monthly payments of September
tage impairment determinations. A medical
1975 for the disabled in those states where there
review establishes the percentage of disability
are federally administered supplements ranges
based on an estimate of the affect the condition
from $197.54 in California to $95.93 in Kan-
would have on earning capacity. Thus there is no
sas.* For the blind the range is from $211.02 in
means or work test. For each percentage disabil-
California to $108.76 in Montana. Calculations
ity a table is consulted where the monthly
for an earlier period revealed that although SSI
payment is given. As of August 1975, for
was likely responsible for a significant rise in the
example, a veteran with a 10% impairment and
mean payment level, the program had not
no dependents would receive $35 per month
significantly reduced the variance in average
with the amount rising to $364 per month for
payments across states.
90% and $655 for 100%.
In discussing SSI there are several areas where
The pension program is for veterans with
one may wish to consider the implications of
limited resources and a non-service connected
specific choices on the disabled. For example,
permanent and total disability. Attainment of
the definition of disability presently used
age 65 is taken as proof of total disability. For
parallels the one used in DI. How eligibility is
those below 65 the percentage impairment
determined also rests on a decision about the
necessary to qualify varies with age. The amount
relative needs of the handicapped. Those who
a person will receive depends on income and
meet a strict disability definition are eligible (on
assets rules.* Effective January 1, 1975, for a
the condition characteristic) for assistance while
qualified veteran with no dependents and annual
those rejected for the program must find other
income below $300, the monthly pension is
means of support. The costs of extending SSI to
$160. For those veterans with an annual income
a broader population must be estimated and
of $3,000 the payment is $5 per month.
weighed against alternative uses of these funds.
The combined programs paid out over $4.6
Information on what is happening to denied SSI
billion in 1973. Separate payments are made to
applicants would be very helpful in this regard.
survivors in cases of death. Also, numerous other
Along with the decision to expand or contract
forms of services are available to veterans includ-
the program, there is the necessity of deciding
ing education assistance, medical care, voca-
the income requirements and support levels. The
basic payment to people with no income and the
treatment of earned and unearned income
*Many sources exist for further information about these
programs. See, for example, the Veterans' Administration
should be established with an eye toward meet-
Annual Report; Levitan and Cleary, Old Wars Remain Unfin-
ing basic needs and maintaining incentives to
ished, Johns Hopkins University Press, Baltimore, 1973; Those
Who Served, Report of the Twientieth Century Fund Task
Force on Policies Toward Veterans, New York, 1974; Lindsay,
*This discussion is limited to the states with federally adminis-
Veterans' Administration Hospitals, American Enterprise Insti-
tered supplementation because the combined figures for aver-
tute for Public Policy Research, Washington, D. C., 1975; and
age federal and state payments are not available in those states
Research and Statistics Notes, HEW, SSA, Office of Research
that have chosen to administer their own supplements.
and Statistics, Notes No. 7 and No. 18, 1975.
11
tional rehabilitation (including subsistance
tives in the eyes of some. Nor can we necessarily
allowances) and payments to assist disabled
condemn a program which denies service to
veterans to purchase specially adapted housing
those whom we deem eligible. In order to judge
and autos.
a program we should know something about its
The question of separate programs for veter-
efficiency, equity, effectiveness and adequacy.
ans and non-veterans should be a topic for
The purpose of this chapter is to provide a
debate. Particularly in the area of income
framework for arriving at sound decision criteria
support type plans such as SSI and Veterans'
for a successful social policy.
Pension there would appear to be substantial
duplication of effort. Also, consideration should
be given to the impact of the shift to a voluntary
Efficiency
armed forces on the need for treating veterans
distinct from other public employees. It is true,
We may examine efficiency from several
perspectives. A universal goal is to achieve the
though, that it may be necessary to offer
maximum benefit that can accrue from the use
substantially better disability protection to ser-
of society's resources. One definition of effi-
vicemen if sufficient numbers are to be encour-
ciency is that an efficient allocation of resources
aged to volunteer. Finally the impairment based
has occurred when there is no possible realloca-
calculation on which benefits are determined
tion of resources which can make someone
may mean that substantial resources are going to
better off without making another worse off.
impaired, non-disabled high income veterans. Of
Another perspective on efficiency arises from
course, changing the basis for payment would
mean an income test to establish actual impaired
the explicit statement that society's resources
are limited. We cannot produce everything we
earning capacity and perhaps veterans should
desire; we cannot have all the programs that we
not be subject to that procedure.
want. An efficient use of resources occurs when
Numerous other programs exist, each with its
we produce the maximum amount of goods and
own special nature and quirks. Space and time
do not allow us to elaborate on each of them.
services possible with a given level of resources,
or when we are using the least amount of
An earlier footnote cited several excellent
resources possible to produce a given level of
sources of general background information and
goods and services. This latter perspective is the
data for these programs. For many there are a
more easily applied in program évaluation. It is
variety of analytical studies the reader may wish
unequivocable that anytime we can produce the
to review. If the Conference focuses more on the
same level of goods and services at a lower cost,
aggregate needs and status of the handicapped,
we will have efficiency gains by doing so.
many of the intricacies of individual programs
The ease with which we can evaluate the
can be overlooked. But as we begin to restruc-
efficiency of the various programs varies with
ture programs to attain new goals more effici-
the nature of their output. Programs which have
ently and equitably it is the very specific aspects
outputs that are measurable in some physical
of program design that require attention.
sense are easier to evaluate in terms of efficiency
than those programs which do not.
Efficiency is an objective concern. We ex-
amine the effects of the allocation of resources
EVALUATION
on the level of output. But we are also interested
in who receives the output produced and con-
We are interested in the evaluation of pro-
sequently in the distribution of goods and
services.
grams designed to assist handicapped individuals.
Are programs "good" or "bad?" Should they be
scrapped or expanded? Is a program meeting its
Equity
goals or objectives? Evaluation can help us to
answer some of these questions. While evalua-
Questions of what is equitable are subjective.
tion may not give us all the answers it will
As a society we make value judgments about
provide us with the framework necessary to
what ought to be, and we often formalize these
make sound decisions. We cannot assume that a
value judgments into the law. For example, we
program is "good" because it has worthy objec-
have decided that those individuals who are
12
most "severely handicapped" should have pri-
Effectiveness and Adequacy
ority in the receipt of vocational rehabilitation
services and we have formalized this constraint
We want to know how effectively a program
on the rehabilitation program and placed it in
is meeting its goals. Suppose that the only goal
the statute. The rehabilitation program must
of the rehabilitation program were to rehabili-
now pursue its efficiency goal subject to such an
tate 300,000 people. We could then say that the
equity constraint.
program was effective in the sense that it was
The introduction of equity constraints may
meeting its goal if the record showed 300,000
lead to a diminution of physical output. In other
rehabilitants. It should be noted that a program
words, we may value the gains arising from what
may be effective and inefficient, or efficient and
we perceive to be fair treatment of the handi-
ineffective. An efficient program is more likely
capped as more important than any possible
to achieve its goals but may not have sufficient
inefficiencies which arise from that treatment.
resources to do so.
:
Reasonable people differ as to what consti-
Similarly, a program may be efficient without
tutes fair treatment or how equity is defined.
being adequate, and effective without being
However, we can derive some notions about how
adequate. Adequacy refers to the ability of a
society views equity considerations from those
program to meet the needs of the entire popula-
which are already manifest in our laws. Two
tion in a problem area. Suppose we designed a
notions of equity which are important are
program with a stated goal of training one
horizontal equity and vertical equity. Horizontal
thousand mentally retarded citizens in voca-
equity usually refers to the equal treatment of
tional skills. If we found that the program was
equals. For example we would like two people
training one thousand citizens a year we would
with the same income to pay the same level of
say that it was an effective program. But if in
taxes but there are grave problems in determin-
fact it could be shown that a population of
ing when two people are equals and what
20,000 mental retardates were awaiting voca-
constitutes equal treatment. Vertical equity re-
tional training, we would not consider it ade-
fers to unequal treatment of unequals.
quate to meet the demonstrated needs.
As an example, suppose that one individual
suffered a disabling injury during the year and
spent three thousand dollars for medical ex-
Some Evaluation Tools
penditures, whereas a second person with iden-
tical income escaped this misfortune, would we
Some of the .standard measures of program
want the disabled person to bear the same tax
evaluation are designed to consider the impact
burden? Vertical equity considerations may dic-
of the program on the distribution of income,
tate a lower tax payment for the person with the
the tax burden it generates and who bears that
extraordinary medical expenses and our federal
burden, the benefit-cost ratio of the program,
taxes are structured to reflect this value judg-
and the net number of people it removes from
ment.
poverty.
Programs can be evaluated in terms of who
If we wanted to evaluate a transfer program,
receives their benefits and who pays for them.
for example, we might begin by examining the
But there is little agreement about who should
inequalities in the distribution of income before
pay for programs. One point of view is that
the program and after the program. We might
those who benefit should pay. Another point is
also calculate the number of people who were
that public programs and expenditures should
raised above the poverty level by the receipt of
lead to a more equal distribution of income.
program transfer payments. In addition to such
Although there is not unanimity of opinion on
distribution measures we would attempt to
proportionality vis-a-vis progressivity, there is
insure that the transfer payment program was
little quarrel with the proposition that regres-
being administered as efficiently as possible, i.e.
sivity is undesirable, i.e. the poor should not pay
at the lowest possible cost.
for the services of the rich. Similarly, the judicial
In a service program such as the vocational
and legislative branches of our government have
rehabilitation program, we might see which
formalized our wish that differences in age, race,
income groups benefit directly from the pro-
sex, etc. be ignored in the determination of who
gram, and which income groups pay for the
is equal.
program. Dr. Donald Bellante has done so for
13
the Florida federal-state vocational rehabilita-
Benefit-Cost Analysis
tion program. He found that the clients of the
and Social Investment
program were more frequently from the lower
income groups whereas the tax burden of the
If society wants to allocate its resources
program fell more heavily on higher income
efficiently, it is obvious there are many claims
groups.* In effect the program generated net
on resources and many social investments which
transfers which were inverse to income. This
could be made. Which of these investments to
would be considered by many to be a desirable
make is easy to describe theoretically, and
property of the program.
difficult to decide objectively in the real world.
If the basic goal is to maximize social well-being,
Program Evaluation and
we should choose those social investments which
the Consumer
make the greatest contribution, given our re-
source constraints. Ideally we would invest until
Program evaluation can provide valuable in-
that point where the incremental social benefit
formation to consumers by specifying who
of the last project or social investment under-
receives what services and who pays for them. If
taken is equal to the incremental social cost
Bellante's findings are correct we probably are
entailed in the resource use.
more willing to support the vocational rehabili-
Benefit-cost analysis is a technique to assist in
tation program because it makes positive trans-
determining which investments contribute the
fers to lower income classes. Popular support for
most to our social well-being. The method
the program may lessen if it were found that the
incorporates an attempt to compute all of the
tax burden fell most heavily on the lower
benefits of an investment and to compare them
income classes and that the higher income
with all of the costs of the investment. Those
classes received most of the program's ex-
projects which have ratios of benefits to cost
penditures.
which are greater than one are eligible candi-
We place different values on equivalent serv-
dates for funding. Those with ratios less than
ices received by different categories of people. It
one would not be undertaken because they
may be important for us whether a program
would always cost more than their value to
serves the severely handicapped, the moderately
society. In order to determine which social
handicapped or the mildly handicapped. Pro-
investments should be undertaken first, we
gram evaluation can make specific who is being
would rank order projects by benefit-cost ratios.
served and hence form the base for recom-
We would then select those with the highest
mendations for change incorporating new or
ratio of benefits to costs until we exhausted our
different equity constraints.
investible resources. If individual projects were
The disabled consumer obviously should have
perfectly divisible, we would allocate resources
an abiding interest in program evaluation. His
among the investments such that the return per
self-interest dictates that programs be run as
unit of resource invested would be the same for
efficiently as possible and the more information
all projects.
about programs and services the disabled have,
But as one can imagine there are many
the better able they will be to use them to their
problems which arise when one applies benefit-
full advantage.
cost analysis to social investment. We examine
In a free society, increased or continued
some of these in a non-technical fashion now.
expenditures on disability programs will be
forthcoming only as society sees the value of
Some Problems in the Application
those programs. Program evaluation if often a
of Benefit-Cost Analysis
potential vehicle for making just such a demon-
stration. The use of benefit-cost analysis in
One of the major difficulties is the quantifica-
program evaluation is a good example of this
tion of benefits and costs. Some benefits and
point.
costs are unmeasurable by any concrete yard-
stick. If a severely handicapped person is pro-
vided a service that assists that person to
*Donald M. Ballante, "A Multivariate Analysis of a Vocational
accomplish an activity of daily living (feeding
Rehabilitation Program," Journal of Human Resources 2
oneself), we know that the satisfaction of
(Spring 1972), p. 241.
increased independence exists. But we do not
14
know how to assign a value to that gain.
project has a low benefit-cost ratio we may gain
Similarly, there are benefits and costs which are
by transferring our resources to other uses which
external to the program which are real but
will more profitably serve us all. If the benefit-
practicably unmeasurable. For instance, the fact
cost ratios for a particular project or program
that over 250,000 people were assisted by the
are high, we may use this favorable result in our
federal-state vocational rehabilitation program in
quest for funds for the program. Benefit-cost
achieving their goal of employment generates
ratios have been computed by many researchers
not only direct benefits to them through their
for the federal-state vocational rehabilitation
participation in the labor market, but also
program. The ratios, despite different assump-
indirect benefits to other citizens who will share
tions, time periods, data sets, etc. have usually
in their physical and psychic productivity.
been greater than one, and often significantly
Analogous cases could be presented for costs.
higher than that. We shall examine one such set
Another problem in benefit-cost analysis is
of ratios as an example.
that the returns from social investment flow
over time and since we cannot foretell the future
we are uncertain about future investment yields.
Benefits and Costs of the
In addition, if benefits accrue over a period of
Federal-State Vocational
time, we must find a technique to discount the
Rehabilitation Program
receipt of future benefits. The value of a dollar
received today, barring deflation, will be worth
A. Benefits
more than a dollar received at sometime in the
The chief measurable benefit of the voca-
future. We must select a social rate of discount
tional rehabilitation program is the increase in
which reflects society's true time preference. If
output that can be expected from the produc-
we do not, we can alter the correct balance
tive activity of rehabilitants. Wages, which are
between public and private investment.
the usual measure of an individual's contribution
Generally, we are striving to maximize social
to output, are compared at entry and at closure
welfare when we undertake social investment
to determine if the program has increased the
but since we cannot explicitly measure social
client's productivity.
welfare, we frequently substitute national in-
The wage that a rehabilitation client was
come or gross output. This substitution can lead
earning when he entered the program, if any,
to distortions especially if continued growth is
must be extrapolated over the client's life and
not synonymous with increased well-being.
discounted by the appropriate rate of interest. A
similar extrapolation must be made for the
wages. that a client earns after completing the
Political Decision-Making and
program. Both of these wage streams must be
Benefit-Cost Analysis
adjusted to reflect the probability of unemploy-
ment, injury, and mortality, and to account for
Although there are many other factors that
the growth in the productivity of the labor force
should be considered before using benefit-cost
over time.
analysis, space limitations dictate our mention-
A recent study of the vocational rehabilita-
ing only one. Political constraints on what can
tion program used the earnings experience of
and cannot be undertaken weigh heavily in
cohorts of rehabilitation clients with similar
decision-making. Benefit-cost analysis in its pres-
characteristics to project wages over the ex-
ent state cannot quantify equity concerns and
pected life of a client. Those clients with no
political value judgments SO as to integrate them
wages at opening were assumed to have potential
into our valuation of benefits and costs. Con-
earnings, in the absence of rehabilitation, which
sequently, decisions on social investment are
were equal to those who were not admitted to
made in a moral, ethical and political frame-
the rehabilitation program.
*
work. Benefit-cost analysis is only one aid to
decision-makers. It will not be the only input
nor should it necessarily be.
Whether benefit-cost results are favorable or
*An Evaluation of the Structure and Functions of Disability
Programs, Year I Summary REPORT Rutgers University,
unfavorable for a specific project, society stands
Bureau of Economic Research, New Brunswick, N. J., June
to profit by the information gained. If the
1975.
15
B. Costs
It is foolish to make blanket predictions
The major costs of the vocational rehabilita-
about the effects of these programs on handi-
tion program are case service costs, which are
capped individuals. Although we can speculate
usually variable, and- overhead costs, which are
that there is a strong possibility that national
primarily fixed. Typical rehabilitation costs
health insurance will be introduced in the next
might include those for administration, counsel-
decade, we are uncertain which of many pro-
ing, placement, medical services, diagnosis,
posed national health insurance plans will be
physical and mental restoration, training, facil-
adopted by the Congress. Similarly, the impor-
ities usage, services provided by other agencies,
tance of a negative income tax and its impact on
etc.
the disabled would depend, among other things,
One other large cost of the program is the
upon the minimum level of income support, the
opportunity cost of wages lost by clients while
effective tax rate and breakeven point of the tax
they were in the program. For instance, if a
adopted.
client could have earned twenty-five dollars a
We shall consider potential legislative changes
week but entered the rehabilitation program
by examining those areas where these changes
instead, a cost to society would be twenty-five
would probably have their greatest impact.
dollars of output foregone for each week the
Given that we do not know the specifics of the
client was in the program and unable to work.
legislation to be adopted, we shall outline
impacts in general terms only.
Federal-State Vocational
Rehabilitation Program as
National Health Insurance
a Social Investment
The introduction of a national health in-
Most benefit-cost ratios computed for the
surance program could radically alter the current
rehabilitation program indicate that the program
structure of medical programs, but it would also
is returning more to society in productivity gains
have an influence on the level and distribution
than the costs expended. Some of the more
of transfer payments. Poverty and disability are
conservative estimates of the ratio of benefits to
linked. The causality may be two-way, i.e.
costs are 5 to 1. Other estimates have run as high
poverty can cause disability through the lack of
as 70 to 1. Our own research favors the
ability to purchase medical care-preventative or
conservative estimate.
curative, and disability can cause poverty by
Benefit-cost analysis is only as good as the
depleting a family's assets and by depriving a
data available and the assumptions we must
wage earner of the ability to earn a livelihood. If
make. The ratio should not be seen as a single
the early treatment of diseases, illnesses or
criterion for social investment, but as a useful
injuries can diminish the prevalence and severity
tool for decision-making. If we realize that the
of disability, the demands placed upon certain
rehabilitation program returns five dollars for
income support programs should be diminished.
every one dollar we devote to it, we can state
To this extent, at least, national health insurance
that although there may be more productive
will influence transfer programs.
investments, the rehabilitation program is a good
Certain medical programs could be expected
one.
to disappear completely with the introduction
of some of the proposed national health in-
surance plans. Medicaid, for example, would be
POTENTIAL LEGISLATION AND
eliminated if the Long-Ribicoff plan were
IMPACT ON HANDICAPPED PERSONS
adopted.* Other national health insurance
schemes might involve revision of Medicare and
The current structure of programs for handi-
related programs. The disabled would not neces-
capped individuals could be radically changed
sarily gain with the passage of certain national
with the passage of legislation. National health
health insurance bills,* and each proposal must
insurance, negative income tax, a nation-wide
temporary disability insurance, or the introduc-
*See Karen Davis, National Health Insurance: Benefits, Costs,
tion of national "no fault" insurance are among
and Consequences, The Brookings Institution, Washington,
potential changes which would have immediate
D. C., 1975, p. 85.
consequences for the handicapped.
*Ibid., pp. 94-96.
16
be examined to determine what the benefits and
Negative Income Tax
costs are to the disabled. The benefits and costs
need not be the same for the disabled and
A negative income tax would have its strong-
nondisabled populations. Major considerations
est direct effect on those programs with an
should be who is covered by the various plans,
income support rationale. The tax would pro-
what services are provided, are the plans publicly
vide positive income transfers to those with
or privately financed, what are the incidences of
incomes below a specified level. In effect, the
the tax burden and the distribution of the
program would establish a minimum level of
benefits.
income that would be guaranteed to everyone.
National health insurance would obviously
Those with incomes above the guaranteed mini-
affect the medical vocational rehabilitation pro-
mum would receive positive transfers, but at a
gram; it could change or eliminate the necessity
reduced rate, until some breakeven point of
of providing some medical services through
income is reached. All incomes above the break-
veterans' hospitals for service or non-service
even point would receive negative transfers, i.e.
connected disabilities; and it could replace some
they would pay positive taxes.
medical payments made under temporary dis-
Among the current programs that aid the
ability insurance plans, workers' compensation
handicapped are several which provide income
schemes, and the general assistance program.
support. These include Supplemental Security
There are other programs which would be
Income, Aid to Families With Dependent Chil-
directly affected by national health insurance
dren and Veterans' Compensation for Non-
but we need not catalogue them here.
Service Connected Disability. Income support
It is interesting to note that national health
programs for the disabled currently provide
insurance has the potential to provide uniform
income transfers to those who meet a means
services across states and people. Two disabled
test, as well as satisfying other eligibility criteria,
people with needs for medical treatment could
sometimes specifically requiring that the person
both receive services under national health in-
meet a given definition of disability. A negative
surance without recourse to status or predis-
income tax plan would serve a similar purpose
ability position. A veteran and non-veteran, for
and would probably eliminate most current in-
example, could both be treated similarly under
come support programs. The tax would continue
the plan. We may or may not consider this to be
to serve as a back-up for the income mainte-
desirable. For example, we may value medical
nance system and for private insurance. It would
treatment more highly for those who were
assist those who were ineligible for income
injured while working. If national health in-
maintenance (or whose income maintenance
surance is adopted which provides for universal
payment failed to keep the individual above the
coverage and extensive services, we shall be
cut-off point) because of age, family status, lack
stating that we do not value the basic treatment
of labor market experience, failure or inability
of one group more than another. The extent of
to purchase private insurance, or some other
services and their intensity will tell us if we value
reason.
the treatment of the disabled more than the
A negative income tax would probably be
non-disabled.
financed out of general revenues, thereby par-
We have not addressed the question of the
tially sharing the cost burden of a handicap at
balance of medical services for the disabled
least for those handicapped people in poverty.
which are provided through the private market.
Using general revenues would mean that the
The way in which the program is financed can
burden of the program would be progressive.
alter this balance, change the insurance industry,
Some income maintenance programs, on the
and directly affect medical care costs. The
other hand, are financed with a payroll tax.
disabled, and all citizens, will be the bene-
These are regressive with respect to collections
ficiaries and cost-bearers with the distribution of
although as the maximum income below which
the benefits and costs depending on the specific
they are collected rises, the regressivity falls. In
nature of the chosen plan.
addition, the net benefits of income mainte-
nance programs for the disabled may be positive.
*This would include rates of price increase in the medical care
*A more direct means of sharing the cost burden of a handicap,
sector.
no-fault insurance, is discussed below
17
A negative income tax could be designed so as
covered against the risk of disability. If this last
to provide uniform payments to all recipients, a
result is deemed important and the other effects
fact often touted as one of its strong points. If
are judged undesirable, a possible alternative
we consider that the levels of payments under
would be direct government subsidization of the
workers' compensation, an income maintenance
purchase of disability insurance by the poor.*
program, vary dramatically across states, we may
If minimum levels were set high enough to
find the uniformity of the negative income tax
eliminate certain of the income maintenance
attractive. However, we should be alive to the
programs such as veterans' disability payments,
fact that a negative income tax would serve all
we could, in effect, be placing ourselves in a
peoplè. It may well be that the disabled have
position where we are changing the social
differential income needs generated by their
contract. Consider a citizen who makes choices
handicaps. For instance, a handicapped citizen
about the allocation of time. The citizen decides
may require special equipment, such as a wheel-
to enter the military service rather than take
chair.* Therefore in deciding on what base the
employment in the private market. Part of the
amount of the transfer is to be calculated these
allocation decision could resolve around the
differential needs must be considered.
benefits the military offers. The citizen may
Ideally, a negative income tax would diminish
have decided that his preference would best be
the resources expended in disability determi-
expressed by lower money income now, but
nation. This would not eradicate the necessity
with insurance against disability and with a
for disability determination, however, as the
guaranteed retirement income in the future.
discussion on the differential needs of the
Although these benefits may still accrue, the
handicapped makes obvious.
choice has been superceded.
Income maintenance programs are generally
The negative income tax concept has much to
related to an individual's capacity to work. They
recommend. Depending upon how high the
are designed to replace lost income, or the
minimum income level is set, what the effective
capacity to earn income. These programs need
tax rate and breakeven point are, it could be a
not disappear with the advent of a negative
great aid to the handicapped. It will be necessary
income tax. We may wish to retain the distinc-
to consider the differential needs of the handi-
tion that people be reimbursed according to
capped. It could eliminate current income sup-
status (veterans) or job situation. If the levels of
port programs, and influence the private in-
payments under a negative income tax plan were
surance market. It will not be an income
set high enough, most income maintenance
cure-all and, finally, it will raise equity questions
programs could also be eliminated. We must
concerning risk.
realize, however, that the design of the tax
might have incentive or disincentive effects with
respect to return to the labor market. It would
Nationwide Temporary Disability
also alter the structure of private insurance
Insurance and No-Fault Insurance
markets.
The choice of a particular minimum level of
Two other programs which could be intro-
income will have several effects on the pattern
duced are a nationwide temporary disability
of insurance protection. For example, those
insurance plan, and national no-fault insurance.
individuals, who in a non-negative income tax
Currently six jurisdictions have compulsory tem-
state would have purchased private insurance,
porary disability insurance. This social insurance
will now be discouraged from doing so. Also
program covers short-term disability caused by
those who would have taken the risk of a
non-occupational illness or injury. Lawrence D.
disability occurring and chosen not to purchase
Haber has poinated out that forty percent of
private protection will, in effect, be forced to
"wage and salary workers in private industry
purchase such protection through the public
have no private or government protection
plan. Another result would be that those who
against loss of wages from non-occupational
would have been unable to purchase insurance
because of their low income level will now be
*It should be noted that this last alternative requires careful
design to avoid unintended results in related areas.
*We are considering a negative income tax without a concomi-
Although we have not made the point explicit, it would also
tant national health insurance plan here.
effect the medical programs.
18
illness or injury."* Compulsory temporary dis-
treatment for non-wage earning accident victims
ability insurance in all jurisdictions would insure
would be eliminated.
against income loss for many of these people.
A no-fault plan should save on administrative
However, this income maintenance proposal
costs. It could retain safety incentives if collec-
does not provide for those citizens who are not
tion rates were structured to reward safe em-
attached to the labor market. We may not want
ployers and drivers. It would take much of the
it to. In addition, temporary disability insurance
uncertainty out of the current system where
would probably be financed with a payroll tax
payment is probabilistic.
with the implications we discussed in the nega-
The implications of each of the alternatives
tive income tax section, i.e. it would be regres-
we have discussed are based on varying amounts
sive.
of information and conjecture. For this reason
Temporary disability insurance could also
the Conference participants may want to focus
provide for medical care payments. The income
on individual program changes as well as devel-
transfer and medical aspects of temporary dis-
oping proposals for several new, less compre-
ability insurance would both probably reduce
hensive, programs rather than the major changes
the burden on some longer term income mainte-
discussed in this chapter. If such an approach is
nance programs. This is based on the assump-
taken it will be wise to carefully trace all the
tion, as made above, that early intervention
impacts of the changes including the effects on
decreases the prevalence and lessens the inten-
the distribution of costs and benefits of existing
sity of disability.
programs and on the post-program situation of
Some states have introduced "no-fault" auto-
all the handicapped. Perverse results from at-
mobile accident insurance. These generally pro-
tempts to fine-tune the structure of support for
vide for medical payments without regard to
the handicapped have been known to occur and
personal liability. The basic concept could be
we should be alert to such possibilities. Thus an
extended to provide for medical payments and
overview of the programs is necessary as is
income loss, real or potential, for any accident
serious consideration of the possible methods
regardless of its nature. New Zealand has re-
designed to consolidate support and improve the
cently enacted such legislation.
well-being of the handicapped.
Under New Zealand law everyone under the
age of 65 is compensated for an accident.
ECONOMIC ISSUES FOR
Accidents of wage earners are compensated from
CONFERENCE REVIEW
employer contributions and the contributions of
The Costs of Handicaps
the self-employed. Motor vehicle accidents are
compensated from a separate motor vehicle fund
There is no denying the fact that a substantial
for those non-wage earners involved in auto-
proportion of the population is disadvantaged as
mobile accidents or wage earners involved in
the result of limitations imposed by physical or
automobile accidents which do not "arise out of
mental impairments. The economic aspects of
and in the course of employment. "t Those
the situation faced by these individuals have
non-wage earners who are injured in accidents
been addressed throughout this paper. Now we
other than automotive are compensated from
bring together many of the thoughts and im-
general revenues.
plications introduced above and begin to address
If a no-fault plan along the lines of New
ourselves to the task of developing a sharp focus
Zealand's were adopted, the workers' compensa-
for conference debate on the economic concerns
tion programs would probably be eliminated,
of handicapped individuals.
current no-fault accident plans would be con-
It is evident that the problems created for
solidated and unified, and those public assist-
handicapped individuals are numerous, complex
ance programs providing payment for medical
and often distinct from the problems facing
Lawrence D. Haber, "Sickness and Injury Cash Benefits: A
other disadvantaged groups. These difficulties
Proposal for Program Planning and Integration," Office of
cover the gamut from simple income needs to
Research and Statistics, Social Security Administration, HEW,
mobility assistance, to architectural barriers, to
p. 361-376.
medical and other rehabilitation services. We
TA summary of the Act can be found in D. R. Harris,
"Accident Compensation in New Zealand: A Comprehensive
have stressed the importance of thinking of
Insurance System," The Modern Law Review, Vol. 37, No. 4,
these matters in terms of cost. Clearly, handi-
July, 1974, pp. 361-376.
capped individuals are burdened with costs
19
beyond those normally associated with the
Sharing the Costs
non-handicapped population. In part, these costs
define the boundaries of the problem. When the
Two reasons for an increased willingness on
the part of society to share the costs with
costs of an impairment are high and cannot be
shifted to others, the impact of the impairment
handicapped individuals are apparent. First there
is likely to be large and hence a severe disad-
is no doubt a strong argument to be made over
the unfairness of placing the burden on handi-
vantage. When many of the costs can be offset
through various mechanisms, including effective
capped individuals alone. Since many of the
public programs, the problems associated with
causes of handicapping conditions are largely
handicapped individuals are lessened.
random, it would appear inequitable to force the
handicapped segment of the population to bear
We should note that the concept of costs we
all the costs. Much of private philanthropy on
use is broader than most would expect. Thus the
behalf of handicapped individuals is the result of
costs of a handicap include not only the direct
public recognition of the random way handicaps
expenditures to overcome the immediate con-
may strike. Additionally, public willingness to
sequences of the condition but also the lost
be taxed for transfer programs, such as SSI,
income, the value of the ability to perform tasks
indicates a similar equity judgment. If the
the person is now incapable of doing, the value
general public could be made aware of the
of opportunities or choices that must be fore-
significant magnitude of these costs and the
gone, and the psychic costs of pain, suffering,
possibility of eliminating many of the costs
loss of self-image and independence and so on.
through means other than direct cash transfers,
Each of these costs lowers the level of well-being
there would undoubtedly be an increase in the
or utility for the individual. Only when we can
willingness to contribute to programs to aid the
fully eliminate or compensate for these costs
handicapped.
(which in some cases is clearly impossible) can
Along with the equity argument made above,
we put the person in a status equivalent to the
it is possible for us to think of the rest of society
pre-handicap situation.
establishing mechanisms to assist the handi-
Thinking of handicaps in terms of the as-
capped for reasons more closely aligned with
sociated costs and viewing these costs as the
their own self-interest. Under the right circum-
basis for a reduction in well-being allows us to
stances, there may be efficiency gains to be
analyze the problems in a rather straightforward
derived by achieving a specified level of public
manner. If costs are used as a guage to measure
protection for the costs of handicaps. If the
the severity of the condition, we would have a
nonhandicapped recognized the possibility that
better guide to allocating resources to handi-
a handicap may befall them or someone in their
capped individuals in an optimal manner, given
family, established programs can then be viewed
social preferences for helping the severely and
as an insurance device. Rather than having to
less severely handicapped people. For example,
bear the costs of the handicap themselves,
it may be decided not to use limited resources to
people aware of public programs understand
assist those handicapped suffering minor costs
that their cost burden will be shared with the
while aiding those individuals who face a signifi-
rest of society.
cant cost burden due to their impairment.
The availability of this option to share the
The decisions society makes as to how much
costs of a handicap suggests the non-handi-
of these costs are to be met and by what
capped receive benefits of a sort from possessing
methods are critical to the situation of handi-
the knowledge that public programs and support
capped individuals. One major goal of the
will be at their disposal should they become
Conference is to increase awareness about the
handicapped. The existence of these benefits
costs of being handicapped. While we have little
implies that members of society will be willing
to say on how such a goal might best be
to help maintain public programs for handi-
achieved, there are obvious advantages to in-
capped individuals. This willingness combines
forming the public of the magnitude of the
costs. A greater awareness of the costs is likely
*The success of telethons that clearly show the costs of various
handicaps may be more than partially explained with similar
to result in a public willingness to take a greater
logic.
portion of the cost burden off handicapped
tWe note that these benefits exist whether or not the person
individuals.
ever has to make use of the program. Having the option is what
generates benefits.
20
with income levels, tastes for risk bearing,
the public's willingness to assist the handi-
perceived chances of becoming handicapped and
capped. Thus efforts must be directed at
the associated costs, available alternatives in the
stressing the randomness inherent in the onset of
private sector and other factors to determine
a handicap. The magnitude of the costs, the
what is in effect a demand for programs for the
available solutions, and the possibility of this
handicapped.* We referred to this demand as
large cost burden being placed at some time on
an efficiency consideration because the focus is
the non-handicapped are all important facts the
on individuals seeking to improve their own
public needs to have to reach correct decisions
well-being. This fact should be recognized be-
on programs for handicapped individuals. Of
cause it is of significance as one begins to search
course, even with complete information, there is
for ways to generate public support for handi-
no assurance that what the non-handicapped
capped individuals and related programs.
public is willing to supply will meet the desires
We have posed two arguments, one equity
of the handicapped. If this is the case, changes
based, the other a result of efficiency considera-
of a more fundamental nature in individual
tions, that might validly explain society's will-
judgments about fairness, risk-bearing and so on
ingness to share the costs of handicaps with
may be required. The long-run alteration of such
handicapped individuals. We are not able to
basic opinions and preferences while certainly of
provide empirical evidence that will show how
less immediate concern to those presently handi-
each argument is responsible for certain pro-
capped may also be matters deserving the
grams and amounts of assistance. There may be
attention of Conference participants.
other more important reasons for having society
share the burden. We believe the two discussed
Expenditures and Choices
are among the more prominent.
If our judgment is correct, there exists sub-
At the same time measures are undertaken
stantial room to debate and decide upon the
with an eye toward increasing public support for
best strategy to increase public willingness to
handicapped individuals, there remains the issue
share the cost burden of handicapped individ-
of how best to spend money already allocated.
uals. If the Conference participants decide that
We have reviewed the specific means whereby
the public is not fully aware of the costs of
judgments can be made regarding how successful
handicaps and of their own chances for incurring
current programs are in achieving their stated
these costs, there is obviously an opportunity to
ends. Even should additional funds be forthcom-
improve the quality of information and the level
ing, there remains the necessity of making
of public knowledge concerning the handicap.
decisions as to the most appropriate uses of that
The issue for debate then becomes one of
money. Given that one of the goals of the
determining the most efficient way to use
Conference is to develop recommendations for
resources to extend society's knowledge of the
actions designed to improve the status of handi-
problem. How can the Conference successfully
capped individuals, it becomes evident that we
transmit the true nature and magnitude of the
must understand how the possible uses of the
costs of a handicap and what it means to bear
money are likely to contribute to attainment of
the brunt of these costs?
the desired ends.
In debating the issue the participants will do
One can easily interpret the Conference mis-
well to retain the basic equity and efficiency
sion statement to imply that program expendi-
arguments that we suggested form the basis of
tures should be designed to achieve maximum
independence, dignity and integration into com-
*This demand is associated with the nonhandicapped. The
demands of the handicapped are treated separately below.
understands the true costs of the handicapped and the value of
We note that at some point it will become too expensive to
the possible benefits they (as the non-handicapped) may receive
increase public information on this subject. When the benefits
if handicapped, then we may in a situation where no more in
to society of the extra information generated by an added
terms of public support can be expected. There is also the
dollar of expenditure designed to improve information are less
possibility that although the public is aware of the equity and
than the added dollar, it is clear society could be better off
efficiency issues that were raised, they have been unable to
spending that dollar elsewhere or not at all.
have their preferences for support of the handicapped correctly
Another possibility is that we may be at a point where both the
interpreted in the political arena. If this is the case, a different
equity and efficiency bases for public support are fully
solution is called for. How public preferences are translated
perceived and all relevant information has already been
into policy in our system of government, while outside the
disseminated. If this is true, that is if the public fully
purview of this paper, may be a matter of substantial concern if
the situation described in this footnote exists.
21
munity life for handicapped individuals. In large
important decisions must be made as to how
part, because of the nature of these goals, it is
much of the resources should be transferred and
impossible to reach a firm judgment on what
from the education of which children. The
individual programs add to these objectives. In
transfer of funds suggest we value what the given
part some of the confusion can be reduced by
amount of resources can do for handicapped
returning to the notion of disability we dis-
children more than what these resources could
cussed earlier. Perhaps it might be more appro-
do in their prior use.
priate to infer how well programs reduce dis-
It may be easy to reach a large majority on
ability or the inability to function in social roles.
some of these judgments. For example most
Thus a program that results in more people
might agree that an extra expenditure for solid
having no mobility limitation or in successful
oak desks to replace perfectly well-functioning
rehabilitation (in terms of work) would be
desks made of some synthetic material could be
highly valued. Programs whose benefits are
better utilized to provide special services to see
nebulous and can be expressed only in general
that the handicapped children are able to get to
terms will require closer examination to see if
school. But often the choices are less clear and
there is truly a reduction in disability.
subject to considerable controversy. Thus,
We leave for the moment the difficulty in
should money be taken from a school for
establishing measurable and valid goals, there
non-handicapped children and used to buy
remains a more fundamental problem. Given the
better books for the handicapped children if the
basic constraint on resources how are we to
change will mean a shift in the teacher-student
decide which goals and which individuals are to
ratio from 1:20 to 1:30 for the non-handi-
receive priority? Certainly there is no argument
capped children?
that the world would be a finer place if no one
A large amount of technical information
suffered as a result of a physical or mental
regarding what these input changes would do to
handicap. Yet it is simply not possible to reach
output as well as information with respect to
such a point. Choices are the basic charac-
how important are the different outputs is
teristics of any economy. These choices must be
needed before any decision can be reached.
made. The final outcome will depend on the
Clearly, though, decisions of this sort are made
values or weights people place on the goals as
all the time with something less than complete
well as our ability to achieve, and the cost of
information. The Vocational Rehabilitation Act
achieving, those goals.
It is useful to think of the situation in the
required a shift in resources toward the more
severely disabled. A new education bill requires
following terms. Given some specific, measur-
more money be spent on the education of
able objective, a set amount of available re-
handicapped childred. Our purpose in pursuing
sources, certain information about how effec-
the entire previous discussion is to stress the fact
tively these resources can be utilized and in-
that resources have other uses, that choices must
formation on the characteristics of those to be
be made and that policy cannot be made in a
served, what is the best way to spend these
vacuum where the preferences of only one group
resources? Although all disability could perhaps
are considered. A fuller understanding of these
be eliminated (assuming the necessary knowl-
edge and technology were available), achieving
principles will lead to better formulated sugges-
tions for change. Perhaps these suggestions
such a goal may simply be too costly. It is
should include ways to alter preferences or the
important to recognize that "too costly" refers
values placed on the ends generated by the
to something larger than dollar expenditures. We
competing demands for the resources. Also
mean the term to imply, too costly in the sense
information concerning the likelihood of achiev-
of other opportunities that must be foregone
ing outcomes of a specific nature will carry
because the limited resources were diverted to
greater weight when the proposed use of funds
other uses. For example, increasing expenditures
goes up against an argument for a rival use of the
for handicapped children may mean less dollars
same funds.
spent on non-handicapped children.* Obviously,
As we begin to examine the possible uses of a
given amount of funds, it is important to retain
the distinction between direct and indirect
*Certainly and resources must come from some other use,
suggesting we are deciding which use is more valuable.
programs. The former can be viewed as those
22
programs providing income and services to in-
relatives and survivors of workers and veterans
dividuals. Examples include DI, SSI, and VR
cannot be overlooked. The status of the disabled
where the assistance, whether in-kind or in cash,
poor not sufficiently covered in other programs
goes directly to the individuals in question.
and the ability of disabled individuals to benefit
Indirect support comes through programs whose
from specific kinds of services must also be
basic design is social and which affect the
addressed in choosing among alternative uses of
environment in which the handicapped function.
funds. The current system, implicitly or ex-
One of the more significant forms of indirect
plicitly, answers, or at least resolves, each of
support is changes in the legal system, including
these issues. We believe the outcome of the
legislation and litigation defining the rights of
Conference can be a significant step toward
handicapped individuals. Other aspects of so-
developing general guidelines that will serve to
ciety that will have an impact on the handi-
clarify the choices regarding programs and their
capped are the general situation of the economy
structure. Special income needs should be veri-
and the research on ways and means to aid
fied, the importance of cause of disability and
handicapped individuals.
predisability status in program support should
Turning first to direct support, several specific
be debated, the basis for establishing the severity
issues deserve debate. The bases for distributing
of the condition and thus perhaps level of
income transfers at present include the person's
support and services must be arged and finally
prior status and current income level. The
the interaction of support and services accorded
Conference participants must be concerned with
the disabled and non-disabled must be based on
determining whether or not the allocation of
some rational decision-making.
resources that results from the current structure
Indirect support, by its very nature, requires
is appropriate. To make this judgment, it is
less of a body of information on the situation of
apparent that substantial information is re-
the handicapped individual and more on the
quired. We must be knowledgeable about the
overall functioning of handicapped individuals in
ability of the person to work, the insurance
relation to society. The main focus here is to
protection the person has secured for himself,
establish a structure of programs and rules to
either through public or private means, the
provide an environment in which handicapped
added cost burden associated with handicapped
individuals can function to their highest ca-
individuals and many other factors that will
pacity. Still there must be retained a recognition
determine the situation for handicapped individ-
of the constraints on developing such a set of
uals.
programs and rules. Resources for programs are
In addition to these objective pieces of
limited, technology and information are not
information, we must consider society's values
complete and costly to obtain and the Constitu-
and preferences, including the opinions of handi-
tion sets basic rules which govern changes and
capped individuals. Thus we must decide how a
limit options.
disabled person, who is unable to work will be
Three of the indirect factors that affect
supported by society. Currently, the eligibility
handicapped individuals are the establishment
requirements for the programs establish who will
and enforcement of laws, the health of the
receive varying amounts and kinds of assistance.
economy, and the knowledge, generated by
These conditions must be reevaluated and
research, that exists regarding our ability to
judged on current standards. Questions include:
lessen or eliminate the burden imposed by the
(1) should predisability status or source of dis-
handicapping condition or to prevent the condi-
abling condition be important in determining
tion in the first place.
the amount and kind of support; (2) what is an
We have stressed the implications for handi-
adequate standard of living for persons with
capped individuals of societal preferences and
handicaps of varying degrees of severity; (3) how
values. Much of these matters are worked out
should society share the costs of the handicap?
through the establishment of laws. Many of the
A number of factors must be considered as
kinds of support accorded handicapped individ-
one attempts to answer each of these questions.
uals are the direct results of legal acts or judicial
For the first question the existence of separate
rulings. Federal and state legislators set expendi-
support systems for disabled veterans, workers
ture levels and program requirements. Clearly
(depending on whether or not they are injured
the status of handicapped individuals is affected
on the job), miners, government employees,
by these rulings and laws. While we could go
23
into great detail on economic aspects of the law,
and the bundle of goods purchased by handi-
we shall leave these matters to another forum.
capped individuals. For example if handicapped
Let it suffice at this point to note that the
individuals use very little public transportation
impact on the status of handicapped individuals
and it is public transportation that is responsible
of new interpretations of existing laws or new
for much of the growth in the price index, then
laws can be great. In many cases these may be
the reported figure will overstate the influence
the most appropriate means to achieve desired
of inflation on handicapped individuals. Simi-
ends. As we will argue later on, the private
larly, the reverse may happen and reported
sector often fails to work satisfactorily and the
figures will understate the influence of inflation.
use of the legal system may be the most efficient
An additional factor to recognize is that if the
means to achieving a desired end, whether it be
component of the price index which is rising is
services accorded handicapped individuals, the
needed by handicapped individuals but is largely
attainment of a satisfactory distribution of
subsidized for them by the government (two
income or some other goals.
examples could be medical care and food) the
The health of the economy can undoubtedly
impact of inflation is further lessened.
explain much variation in the situation of
In sum and in recognition of the need for
handicapped individuals. On one side, it is
empirical verification for many of our prior
evident that an expanding growing economy will
conjectures, it would appear that Conference
mean more resources for all. Thus the programs
participants should discuss the ways and means
for handicapped individuals are more likely to
to influence a growing economy with the aim of
grow and increase in both coverage and level of
producing more resources and employment op-
support during expansionary rather than reces-
portunities for handicapped individuals. Frank
sionary times. On the other side, handicapped
recognition of the possible side effects such as a
individuals will find improvement along with the
rise in prices should be faced, although the
economy in the same way as other groups whose
impact of inflation has been lessened due to
labor force participation is affected by the need
continued subsidization of necessities and con-
for their services. Whether true or not, em-
tinued application of cost of living adjustments
ployers often perceive extra costs, or lower
to transfers and other support for handicapped
productivity associated with hiring handicapped
individuals.
individuals. But as the demand for a product
We believe that in the long run this kind of
grows, the employer will turn to new workers to
resort to utilizing market incentives as the means
expand production. Thus a growing economy
can counteract employer reluctance to hire
to encourage the private sector to increase
demands for the disabled, with the public sector
handicapped individuals.
there to meet the needs of those unable to work,
The reverse findings hold, when the economy
weakens. Employment of handicapped individ-
are likely to be most effective. Attempts
uals may be discouraged because of a lessened
through legislation to alter employer demands
for handicapped individuals will not nearly be as
demand, and hence a lowered willingness to pay
a certain price for a certain quantity of goods.
powerful as the forces that will come into play
in a growing free-market-economy. It is the
Another aspect of macro-economic aggregates
incentives provided by the private market that
often classed with those factors having a nega-
will be more valuable in the long run.
tive influence on handicapped individuals is
inflation. Rising prices worsen the situation of
The other side of these arguments deserve
anyone whose income does not grow as fast as
mention to that useful debate can arise. Some
the prices of the goods they buy.
argue the valid point that dependence on the
To some degree the consequences of inflation
private market means the fortunes of handi-
for many handicapped individuals are minimized
capped individuals will fall and rise on no
by cost-of-living adjustments in transfer pro-
account of their own. Of course the changing
grams and the growth of public expenditures in
nature of the overall labor market situation
other programs. Trends over the recent years
undoubtedly lends validity to this argument. But
show expenditures in these areas more than
of what significance is it? Many others move in
keeping pace with inflation. An additional factor
and out of the working population or to
to keep in mind is the distinction between the
different jobs as the basic economic structure is
bundle of goods on which inflation is calculated
altered.
24
portation for all handicapped individuals be-
handicapped individuals. Our presentation has
cause that is the fair solution will not be enough
been broader than the non-economist would
to achieve the desired end. Again, as before, we
have expected. Yet the study of the allocation
believe the long run solution is through the
of scarce resources among competing ends is an
market and there, preferably by using those
effort limited simply to matters of expenditure
policies that produce the desired result with
and income levels.
little interference in the workings of the market.
Several issues of direct concern deserve to be
Yet, if the need is critical and time is of utmost
reiterated. A basic issue is how handicapped
importance, direct public action may be more
individuals are to be defined and whether
desirable. In such cases, the costs of enforcing
classification based on cost burden, medical
sanctions and requiring inefficient production
measurement or some other means is most
must be carefully weighed against the benefits
valuable. A second problem area is the structure
accruing to all of society as a result of achieving
of support for handicapped individuals. How
an equitable solution.
should the public role be altered, how is
Another important source of indirect support
differential treatment to be determined and how
for handicapped individuals is the information
can effective incentives in the private market be
generated by research. Successful well-done re-
structured to achieve the desired ends? One of
search can provide new detail as to how to
the most significant matters that must be dealt
retrain handicapped individuals or it can tell us
with is the treatment of handicapped individuals
useful things about the characteristics of handi-
vis-a-vis other disadvantaged groups. The situa-
capped individuals. Earlier we stressed the signi-
tion arising out of consideration of a negative
ficance of the costs of handicaps. Research can
income tax and national health insurance raises
inform us as to the nature of these costs and
serious questions in this regard.
who is bearing them. Such research provides the
Of major importance in all the discussion is
basis for programs aimed at reducing the cost
that we retain the focus on the general goals we
burden on handicapped individuals. Program
seek to achieve, the fact that alternative
evaluation is an important requirement in the
methods to arrive at the desired ends are
design of a system that creates incentives for
available, and that each option has a cost. If we
handicapped individuals to strive for dignity and
view the physical or mental condition as con-
independence.
structing obstacles and reducing options to those
A product of this Conference could very well
so affected, then policy choices have a rather
be a research agenda directed at answering
direct basis for comparison. For example, does
specific questions about the costs of handicaps
an increase in transfers to handicapped individ-
and how impairments cause disabilities, par-
uals improve the chances of attaining dignity
ticularly how social factors interact with individ-
and independence more or less than if the same
ual characteristics to determine whether or not
amount were to enforce a legislative edict?
an impaired person becomes disabled. Another
Along with judging the efficiency with which
area where information would be useful is the
money is spent we must evaluate the distribu-
incentive structure needed to achieve satisfac-
tion of these resources. Should the severely
tory employer behavior both with regard to
handicapped individuals receive priority in trans-
safety precautions, insurance plans and hiring
fers and the less severely handicapped preference
policies. In a larger sense when there is competi-
for services? Should the aged and children
tion for resources it will likely be those areas
receive greater per capita support than those in
where needs are firmly established and the
the working age group?
effectiveness of available ways to deal with the
The participants at this Conference must
problems that will be the beneficiaries of added
come to grips directly and not implicitly, as has
support. Tighter budgets and more sophisticated
often been the case in the past, with these kinds
analytically-oriented office holders will require
of questions. Legislation and legal rulings have
careful and thorough evaluation of all alterna-
specified strict funding and staffing rules for
tives before decisions are made.
(sometimes) well-defined classes of people.
Summary and Conclusion
Handicapped individuals deserve a voice in estab-
lishing these rules. But it must be a reasoned
We have argued for serious consideration of a
voice and to be effective, a voice based on an
number of economic questions that concern
understanding that limited resources require
25
With sufficient support during periods of slow
Private markets operate in response to de-
or no growth the position of handicapped
mands.* Because there are not a relatively large
individuals need not become disastrous. The
number of people with large incomes demanding
system of transfers and training provide a
special goods and services for handicapped in-
back-up to the labor market. A major choice may
dividuals, the quantity demanded and the price
be between increasing transfers or training or
they are capable and willing to pay is too low to
perhaps using the funds to provide wage sub-
make production worthwhile. If we could find a
sidies for the employers who hire handicapped
way to increase demand or lower the costs of
individuals.* A wage subsidy will lower the cost
production, we could move to a situation where
of hiring handicapped persons and hence make
supply might equal demand.
such an option more palatable to the employer.
There are many other means at hand to adjust
An economic approach of this sort will prove a
the market outcome. These will be mentioned
better tool to expanding employment of handi-
below and Conference participants should con-
capped individuals than much of the moral
sider both the costs and benefits associated with
suasion of less-than-fully-enforced legal rules. An
each argument. Only when the true and full
experiment with varying levels of subsidy could
implications of each alternative are recognized
generate valuable information for future policy
can we expect the appropriate social policy to
choices.
be chosen.
The economy we have been discussing in
One option to alter demand is to give handi-
terms of employment is largely a private one.
capped individuals more income with which to
Our presentation up to now has been directed
demand the goods they desire. A second pos-
toward the factor market. The other side of the
sibility is to find ways, through research, to
traditional circular flow is the product market
produce the goods in question at lower cost. For
where goods and services are demanded and
example, some way to alter housing or transpor-
supplied. The market rations resources to the
tation so that it will be accessible at a reasonable
production of those items where demand is
price would be a significant improvement. Sim-
sufficiently high to make production worth-
ilarly, a government subsidy, should the private
while. Given an equitable distribution of income
sector be moving too slowly, could encourage
at the beginning, the perfectly operating market
research and production along these lines. Legal
will produce exactly what society desires, as
action could require the supply of certain goods
expressed by the willingness to pay a specific
to be set at acceptable levels. Government could
price for a certain level of output. As price and
produce the good in question itself as in many
quantity vary we get a locus of points we refer
of the programs for veterans.
to as a demand curve. It is in response to this
There are numerous difficulties in assessing
demand curve that the private sector will pro-
each of these alternatives. For now let us
duce goods.
acknowledge the significance of equity con-
For a number of reasons the private market
siderations by noting that such judgments could
may fail and there thus arises a need for public
outweigh the costs of many proposals. The
intervention. Public action can vary between
participants, though, must recognize that it is a
provision of a good to direct production of the
social equity judgment and not their own. Thus
good to subsidies or penalties to encourage
optimal private-market behavior. As we turn to
Demands are, as we noted above, a representation of
the demands of handicapped individuals, it is
willingness to pay. The significant factors affecting willingness
useful to see why certain goods valuable to
to pay are price, income and tastes. It is generally true that
handicapped individuals go unproduced. Why
lower prices result in more goods being sold. Also higher
are wheelchairs produced and seeing-eye-dogs
income suggests a greater willingness to pay. Tastes are based
on how important a good is to someone. As it becomes more
trained? Why are specially adapted buses and
important or close to "a necessity," we would expect a greater
buildings so difficult to have built?
willingness to pay. The reverse holds for luxury items. All three
factors interact with one another to determine an individual's
demand which in turn is a part of the overall market demand.
Supply is largely determined by the costs of production. A
*A review of the basics of wage subsidies can be found in
producer will be willing to supply varying amounts of the good
Barth, Carcagno and Palmer, Toward An Effective Income
as his costs vary. Thus it is generally true that increases in
Support System: Problems, Prospects, and Choices, University
supply bring increased costs which means firms will require a
Wisconsin, 1974.
higher price if they are to produce and sell their goods.
26
simply arguing for adequate housing and trans-
choices and that each option has numerous cost
and equity implications. Each option must be
considered in relation to general goals and the
most appropriate choices must be defended
effectively and with vigor by all concerned
citizens.
27