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THIRD ANNUAL REPORT
ON THE
SECTION 130 DEMONSTRATION PROJECTS
FOR
SEVERELY HANDICAPPED PEOPLE
June 1979
Jeffrey Koshel, Project Director
Timothy Muzzio, Project Manager
Joseph LaRocca
Eugene Durman
Brenda Chapman
Robert Counts
THE URBAN INSTITUTE
2100 M Street, N.W., Washington, D.C. 20037
TABLE OF CONTENTS
Page
Summary of Findings.
1
I.
Introduction
6
Definition of Independent Living Rehabilitation
6
Background
8
Recent Legislation
12
The Demonstration Projects
13
II.
The Demonstration Projects
15
Institute of Rehabilitation - New York
Office of Vocational Rehabilitation
16
Policy Implications
18
Department of Rehabilitation Medicine
University of Washington
18
Policy Implications
22
Utah Division of Rehabilitation Services
22
Policy Implications
24
Texas Commission for the Blind
25
Policy Implications
27
Center for Independent Living
27
Policy Implications
33
III.
The Clients
35
Sex, Age, Race and Education
35
Primary and Secondary Disability
36
Severity of Disability
38
Income and Employment
41
Comparison to the General VR Population
43
IV.
Problem Areas for Clients
46
Equipment
47
Service Needs
53
Household Management Needs
61
Social Interaction
66
Transportation
70
Architectural Barriers
75
Living Status
80
Physical Functioning
87
V.
Cost of Services
91
Cost Analysis
99
Comparing Project Costs with VR Program Costs
103
Appendix A - Tables on Client Characteristics
Appendix B - Data Collection Methodology
Summary of Findings
The Rehabilitation Act of 1973 mandated a series of demonstration projects
to see how severely handicapped people could benefit from a program of indepen-
dent living rehabilitation and what costs would be encountered. For the past
three years, The Urban Institute has been evaluating the demonstrations
and their various approaches to service delivery. Two of the projects, Seattle
and New York, concerned themselves with medically oriented physical restoration
services. Two others, Salt Lake City and San Antonio, were designed to
deliver independent living rehabilitation services through their state
vocational rehabilitation agencies. The fifth project, located in Berkeley,
is a consumer action organization which advocates for the improvement of
programs and services for handicapped people.
The clients served by the Section 130 projects tend to be working age
(21-55 years old) males, reflective of the general population in terms of
race, who have a low level of income. They depend heavily upon outside
assistance for income due to their inability or lack of opportunity to work.
Their education level is somewhat lower than the general population. Twenty-
eight percent of the clients lived in institutions at the time of intake,
and only 30 percent of these persons had outside residences immediately
available to them. All clients were severely handicapped according to the
criteria employed.
There were wide variances in the characteristics of the clients, pointing
to the fact that severely handicapped people are a highly diversified group,
and each client brings to the project a unique set of characteristics requiring
a highly specialized service plan. Because of such greatly diversified needs,
highly individualized rehabilitation plans have to be constructed if this
2
population is to be maximally served. In this connection the new legislation
for independent living, PL-95-602, requires that there be an Individualized
Written Rehabilitation Program (IWRP) for each client receiving independent
living rehabilitation services.
Another major finding is that a client does not bring to the situation a
static set of needs. Needs change over time. As. the environment changes, so
do the functional limitations. As the client improves in functioning, a new
set of needs emerge. Re-evaluation of the client seems extremely important
if the most severely disabled are to reach their maximum level of independence.
Unmet equipment needs are a major problem for clients in the projects.
About 65% of all clients had equipment needs at intake. The number of needs/
client ranged from 0 to 10. The most frequent needs at intake were for ramps,
trapeze/bathtub lifts, wheelchairs and transfer chairs or boards. As these
needs were met, other areas of needs increased, such as the need for specially
equipped autos, typewriters and tape recorders. The mean number of needs were
reduced over the years and the pattern of need reduction seems to indicate that
most of the more basic needs were met, although many other needs remained for
these clients.
Service needs followed the same general patterns as equipment needs. That
is, a majority of clients had unmet service needs at intake. The mean number
of unmet needs were high (4.81 per client). This mean was greatly reduced
over the years to about 2.1 needs per client. If one examines the patterns of
need reduction, it is seen that medically related and physical restoration
services were the most reduced type of need, while non-medical/physical
resotration needs (e.g., vocational placement, educational costs, etc.)
were not as greatly reduced.
3
In the area of household management needs, attendant care and household
financial management were the most frequent unmet needs at intake, although
assistance in preparing meals and housekeeping, and assistance in shopping
were cited by many clients as unmet needs. By the third year, all unmet needs
were substantially reduced. except for the need for household financial
management, which actually increased. Also, assistance in conducting personal
business activities appeared as a need for the first time (by 13% of the
population).
All of these changes (in equipment, service and household management needs)
seemed to be reflected in the increase in the amount of social interaction
engaged in by the clients. Clients were attending more meetings, meeting more
often with friends and relatives, and more often attending different forms of
public entertainment. Of special interest was the fact that the frequency of
clients visiting friends almost doubled. As this activity requires the
integration of services and equipment provided, and overcoming of architectural
barriers, it is an excellent indicator that the programs were successful in
more fully integrating these persons into the mainstream of society.
Two areas which remain as particularly troublesome for clients are trans-
portation and architectural barriers. While use of specific types of trans-
portation increased, which indicates improved transportation ability, only a
slight increase occurred in the percent of clients not having a transportation
problem. Over half of all clients reported some problem after being in the
program for three years. Similarly, most clients reported problems with archi-
tectural barriers. Barriers in the home were greatly reduced, but problems with
barriers in the outside environment remained high over the years. As trans-
portation and architectural barriers are areas over which clients and projects
have little control, these findings were not surprising. They do indicate
4
the need, however, for more vigorous advocacy activity in making transportation
systems and the outside environment accessible to the handicapped population.
Living status, defined as type of housing. and household composition,
generally improved for the client population. The most exciting finding was
that about one-half of all clients in institutions were mainstreamed into the
community. An analysis of these deinstitutionalized versus those still in
institutions did not find any predictor variables of potential for deinstitu-
tionalization. However, these persons who reported having a place to go were
more likely to be deinstitutionalized. But even of those reporting no such
place, many were deinstitutionalized. The services most often reported as
needed for deinstitutionalization were assistance in preparing meals, house-
keeping and/or shopping, and attendant care.
A scale of living status was constructed by looking at household com-
position by age appropriateness and by whether or not the client was in school.
It was found that many clients improved, most did not change, and a few
"worsened" according to the scale. An analysis of those who did not change
revealed that substantial progress was made in other areas such as reduction in
unmet equipment needs, an increase in services received, and an increase in
frequency of social interaction. So although living status for some clients
did not improve, other benefits were derived from being in the project.
Overall, most measures of the clients' situations indicated improve client
status. Many equipment, service and household management needs as well as
transportation and architectural barriers problems existed at intake, but most
were substantially reduced over the years. Transportation and architectural
barriers problems remained the least resolved problem areas for the clients.
Frequency of social interaction substantially increased over the years, and
perhaps that is the best overall indicator of client improvement.
5
Information on physical functioning, obtained through Barthel and PULSES
scores indicated that most clients improved in their first year of service.
Physical functioning tended to stabilize after the second year. As most
clients were physically disabled, improved functioning in the first year can
be seen as a real and important gain for the clients. As expected, clients
served by the San Antonio and New York projects did not experience improvement
in their physical functioning, but gains in other areas demonstrated that all
clients seemed to benefit from participation in the demonstrations.
In general, it appears that costs for an independent living rehabilitation
program will be higher than costs for the regular vocational rehabilitation
program. Costs per client in the projects were almost double. the costs
per client of the regular vocational rehabilitation program, and almost
fifty percent greater than the costs per client paid for by the Trust Fund.
The average total expenditure per client was $9,097 per year. Average project
funds per client were $1,427 per year.
This difference between project cost and total cost reflects the apparent
success of the projects in utilizing similar benefits for client services. As
similar benefit information is not available for the regular rehabilitation
system, project information should be highly useful to both vocational and
independent living rehabilitation counselors, and point to the need for more
information on similar benefits.
Cost data showed that most funds were expanded for purchased services.
Fewer dollars were spent per client on counseling and placement activities than
for clients funded through Section 110 monies or out of the Trust Funds. One
major implication, then, is that manpower. needs for programs of independent living
rehabilitation will tend to be greater for direct service providers than for
counseling and placement staff.
I. INTRODUCTION
It is the purpose of this report to analyze the third year activities of
five demonstration projects funded by the Rehabilitation Services Administra-
tion of the Department of Health, Education, and Welfare. These demonstrations
were designed to explore different ways of providing independent living
rehabilitation services to persons typically thought of as too severely
disabled to have a vocational goal. Each project collected common, periodic
information on clients served, including information on clients' functional
limitations and their status concerning housing, transportation, education,
medical problems, employment and service and equipment needs. In addition,
information on services provided and costs of these services was collected.
This present report is based primarily upon these data. More specifically,
the report will focus on the following questions:
- How were each of the projects designed?
- Who were the clients served by them?
- What were these clients' service needs?
- What services were provided to them?
- What were the costs of these services?
- How did the clients benefit from the services they received?
It might be helpful to start with a discussion of the definition of
independent living and the background of the demonstration projects. Such a
discussion might provide insight into the reasons for and importance of the
independent living rehabilitation effort.
Definition of Independent Living Rehabilitation
Independent Living Rehabilitation (ILR) is a concept which has evolved
over time. Because of the various types of disabilities, the varying degrees
of severity and the multifaceted interactions of social demographic variables,
it has been difficult to define one specifice "outcome" or "goal" for a program
7
of ILR. In the 1950's the concept referred to services that would allow a
handicapped individual to achieve a degree of independence from the need for
institutional care and/or alleviate the need for attendant care, thus reducing
burden on others and restoring a measure of dignity and self respect. Here
the emphasis is placed on freeing handicapped individuals from institutional
settings. Since the 1960s, this view of independent living has been gradually
expanding. One not only speaks of deinstitutionalization but of freedom in
the home, freedom to travel (accessibility), the opportunity to attend school
and the opportunity to work. Most of these changes have come about because of
the determination of the handicapped to show that these are activities desired
by all people.
More recently, the goal of ILR has come to refer to "the ability of the
severely handicapped person to participate actively in society; to work, to own
a home, to raise a family, etc. In summary, to participate to the fullest
extent possible in normal day-to-day activities of everyday life. 11/ This
definition not only encompasses a broader spectrum of activities, but also
implies a goal orientation by the use of the word "ability," indicating that
a program of ILR would provide skills and knowledge that would impart a level
of function necessary to live independently. The key here is whether any
entity can guarantee such a delivery, given the present cultural, sociological
and legislative restrictions that impede the deliverance of this ability.
It should be clear, then, that Independent Living Rehabilitation refers
not only to ability, but also the freedom to engage in any and all activities
engaged in by able-bodied people. Such activities include access to: all
public and private buildings (stores, schools, offices, homes and apartments,
etc.) ; streets and sidewalks; adequate numbers and locations of all forms
1. Rehabilitation Services Administration Information Memorandum, August 9,
1977.
8
and types of housing; adequate transportation (private and public) ; adequate
health care and maintenance at a reasonable cost (this includes not only
primary care but also attendant care) ; and employment opportunities commen-
surate with skill and intellectual levels.
Background
Interest in providing services that would assist the severely handicapped
in achieving an independent lifestyle dates back several decades. As early as
1959 legislation had been proposed that would extend the benefits of rehabilita-
tion to persons with severe handicaps, even when no vocational objective was
obvious. This and many subsequent bills contained titles relating to indepen-
dent living rehabilitation services. These services referred to a variety of
types including counseling, psychological and related services, physical
restoration, and other related services, needed prosthetic appliances and
training in such skills as would help maintain independent living.
In 1961 legislation was introduced which contained a title on "Indepen-
dent Living Rehabilitation Services." This bill included appropriations of
$15 and $25 million for the first and second years for providing cooperative
arrangements between state agencies administering the program and those
agencies that administered public assistance and public health programs. The
types of services proposed under this legislation were similar to those pro-
posed in 1959. However, mobility and personal adjustment services were
included, and the emphasis changed from the simple mention of "maintenance"
to "
maintenance needed to assure the availability of services, and follow-
up services to insure maintenance of rehabilitation gains. There was also a
shift from a limited discussion of preventing or reducing institutionalization
to improving the lifestyle of the "seriously handicapped individual." This
removal of situation specific goals and the addition of the qualifier "seriously"
handicapped were further evidence of the direction of future legislative efforts.
9
Questions were raised during debate on the proposed legislation as to
the need for these services, the need for separate appropriations and the
inclusion of an "economic need" clause for rendition of services. The National
Rehabilitation Association, one of the main architects of the legislation,
reported that there were sufficient numbers of severely handicapped persons
who could benefit from such services. The National Rehabilitation Association
when asked about the need for a separate title responded, "Until experience
has been gained in the administration of Independent Living Rehabilitation
it is considered best to have the two separate, although administered by the
same agency. This arrangement will assure that attention given to the new pro-
gram will not detract from emphasis upon vocational rehabilitation." Except
for counseling, psychological and related services, the bill required that a
person meet a set standard of economic need. Although no clear explanation of
opposition to this provision is available, it is felt that the opposition was
due to the inability of the Department of Health, Education and Welfare to
settle who would administer the program. Public Health, Rehabilitation and
Social Services units had all expressed interest. Again, independent living
legislation failed to pass Congress.
Renewed efforts to authorize ILR services were begun in the early 1970s.
After prolonged testimony establishing that the severely disabled without
vocational potential should be provided these services, and after years of
intensified emphasis on vocational rehabilitation to serve the most severely
disabled, provisions were written into the vocational rehabilitation bills of
1972 and 1973. The bills had two major thrusts. The first was the authoriza-
tion of a new formula grant program designed to provide service to individuals
with the most severe handicaps without vocational objectives. The second was
to move the VR program in the direction of serving more severely disabled
10
with vocational potential. The section of the Rehabilitation Act of 1972 on
Independent Living defined its purpose:
to assist the several states in developing and implementing
continuing plans for meeting the current and future needs of handi-
capped individuals for whom a vocational goal is not possible or
feasible, including the assessment of disability and rehabilitation
potential, and for the training of specialized personnel needed for
the provision of services to such individuals and research related
thereto.
The President vetoed this bill. His Memorandum of Disapproval stated,
in part:
This measure would seriously jeopardize the goals of the voca-
tional rehabilitation program and is another example of Congressional
fiscal irresponsibility. Its provisions would divert this program
from its basic vocational objectives into activities that have no
vocational element whatsoever or are essentially medical in character.
In addition, it would proliferate a host of narrow categorical pro-
grams which duplicate and overlap existing authorities and programs.
Such provisions serve only to dilute the resources of the vocational
rehabilitation program and impair its continued valuable achievements
in restoring deserving American citizens to meaningful employment.
When the 93rd Congress convened, some changes were made in the vetoed
bill, but none affected the independent living provisions cited above. On
March 15, 1973, the bill was sent to the President for signature. On March
27, 1973, he vetoed the bill, citing these reasons, among others for his
action.
S. 7, if enacted, would result in an increase in Federal outlays of some
$1 billion above my budget recommendations for fiscal years 1973-1975
I would emphasize that even if S. 7 were not fatally flawed by
its large expense, I would have serious reservations about signing
it, for it also contains a number of substantive defects. Among
them:
--It would divert the Vocational Rehabilitation program
from its original purposes by requiring that it provide
new medical services. For instance, it would set up a
new program for end-stage kidney disease worthy con-
cern in itself, but one that [can] be approached more
effectively within the Medicare program, as existing
legislation already provides.
Vocational Rehabilitation has worked well for over
half a century by focusing on a single objective: train-
ing people for meaningful jobs. We should not dilute the
resources of that program or distort its objective by
turning it toward welfare or medical goals.
11
--Secondly, S. 7 would create a hodge-podge of seven new
categorical grant programs, many of which would overlap
and duplicate existing services. Coordination of ser-
vices would become considerably more difficult and would
place the Federal Government back on the path to wasteful,
overlapping program disasters.
The hearings conducted during these legislative sessions produced testi-
mony to the effect that not enough was known about the numbers and types of
services, and the delivery system needed to provide those services, to the
severely handicapped. There also appeared to be possible duplication of
existing authorities which could provide the needed services.
Following the failure of the second attempt to override, the Administra-
tion and the Congress worked out a compromise. The provisions establishing
the new program were dropped. In exchange, the Administration agreed to
conduct a study concerning the nature of existing authority and the ability
of the rehabilitation community to actually serve the more severely handi-
capped.
Thus, the introduction of independent living rehabilitation into law
first appeared in Section 130 of the Rehabilitation Act of 1973. Although
the concept was not new, the introduction of this concept into law had taken
a series of legislative attempts, support from various consumer groups, and
some adroit compromises. The resulting compromises directed the Secretary
of HEW to conduct a comprehensive needs study of the most severely handicapped:
Sec. 130. (a) The Secretary shall conduct a comprehensive study,
including research and demonstration projects, of the feasibility
of methods designed (1) to prepare individuals with the most severe
handicaps for entry into programs under this Act who would not other-
wise be eligible to enter such programs due to the severity of their
handicap, and (2) to assist individuals with the most severe handi-
caps who, due to the severity of their handicaps or other factors
such as age, cannot reasonably be expected to be rehabilitated for
employment but for whom a program of rehabilitation could improve
their ability to live independently or function normally within
their family and community. Such study shall encompass the extent
to which other programs administered by the Secretary do or might
contribute to the objectives set forth in clauses (1) and (2) of the
12
preceding sentence and the methods by which all such programs can
be coordinated at Federal, State, and local levels with those
carried out under this Act to the end that individuals with the
most severe handicaps are assured of receiving the kinds of assis-
tance necessary for them to achieve such objectives.
(b) The Secretary shall report the findings of the study,
research and demonstrations directed by subsection (a) of this
section to the Congress and to the President together with such
recommendations for legislative or other action as he may find
desirable, not later than February, 1975.
The first step in implementation of this section was completion of the
Comprehensive Service Needs (CSN) Study, which was conducted by a large study
consortium directed by The Urban Institute.
The CSN study collected and analyzed large volumes of data. The CSN
study documented a significant amount of unmet service needs among severely
handicapped people. However, the professionals involved in the study recog-
nized a need for more information--information that could only be gathered
through a systematic, controlled approach. As a result, the study recommended
that a set of demonstration projects on independent living rehabilitation be
conducted. The objectives of these projects would be to further investigate
the extent and characteristics of the severely handicapped, their rehabilita-
tion needs, and the cost of needed rehabilitation services. The CNS report
supported the mandate of Section 130 to investigate innovative approaches to
serve severely handicapped people, and the Rehabilitation Services Admin-
istration (RSA) funded six ILR demonstration projects.
Recent Legislation
In 1978 the Congress enacted Public Law 95-602 which, among other things,
established a Federal grant-in-aid program for the provision of services and
for the establishment and operation of Centers for Independent Living designed
to assist severely disabled people, including blind people, to improve their
ability to engage in employment or to function independently in their families
and in their communities. The study mandated by Section 130 of the Rehabili-
13
tation Act of 1973 yielded data, findings and recommendations which
significantly aided in the development of Title VII--Comprehensive Services
for Independent Living of Public Law 95-602. The Comprehensive Service
Needs Study identified the numbers of the most severely disabled people in
our population, their demographic characteristics, their disabilities, housing,
transportation, service and equipment needs, and other relevant information.
The Demonstration Projects for Independent Living are attempting to meet the
many problems faced by severely disabled people and to utilize and coordinate
existing services in their day to day operations. Just as the Comprehensive
Service Needs Study yielded valuable data and findings for the development
of the independent living rehabilitation legislation contained in P.L. 95-602,
the demonstration projects should be helpful in the establishment and opera-
tion of programs and projects under Title VII of The Rehabilitation, Compre-
hensive Services and Developmental Disabilities Amendments of 1978--P.L. 95-602.
Of the six original projects, five provided independent living services
over the three year period covered by this report. They are organized and
staffed in different ways, reflecting the various organization patterns
possible under Title VII of P.L. 95-602. These projects are described in
detail in Chapter II of this report.
The Demonstration Projects
The demonstration projects, funded by RSA, were selected in such a fashion
as to gather as much of the needed information as possible. Projects were funded
that could address specific delivery issues as well as issues concerning specific
handicapped populations. Two projects concern themselves with medical oriented-
physical restoration services. One of the projects is located in Seattle,
1. Report of the Comprehensive Service Needs Study, The Urban Institute,
Washington, D.C., June 23, 1975. Summaries of the findings of the Comprehen-
sive Service Needs Study are contained in the November-December 1975 and the
March-April 1976 issues of American Rehabilitation.
14
Washington, at the University of Washington, Department of Rehabilitation. This
project is involved with physically disabled clients during and after services
of the rehabilitation facility. The other is located at the Institute of
Rehabilitation Medicine in New York City. This project deals mainly with
the needs of individuals with progressive diseases, specifically Muscular
Dystrophy. This project seeks to integrate its activities with those of the
State Rehabilitation Agency.
Two projects were selected to deliver ILR through their respective
State VR Agencies. The Utah project, located in Salt Lake City, approaches
ILR with the traditional VR counselor model. Its clients are mainly physically
disabled clients. The San Antonio, Texas, Blind Multihandicapped Project acts
as a residual to a State VR Agency. In this project, the clients are those
who have been rejected from the Texas Commission for the Blind as "handicapped
to severe. " All clients are totally or legally blind and possess a variety
of secondary disabilities.
The fifth project is located in Berkeley, California, at the Center for
Independent Living (CIL). CIL is a consumer action organization which advocates
for the improvement of programs and services for handicapped people. The CIL
project uses the peer counseling model to help the handicapped learn to deal
with the various problems that confront them on a day-to-day basis.
In the next chapter, we provide a more detailed description of these
five demonstration projects and note some of the more significant changes
that have occurred during the third year. We also draw a number of policy
implications that seen to be supported by the experiences of these projects.
II. THE DEMONSTRATION PROJECTS
The five demonstration projects, developed under the authority of
Section 130 of the Rehabilitation Act of 1973, are organized and staffed in
different ways. Clientele differ project by project as do their
sponsorship, funding sources, service delivery systems and emphasis. They
reflect the various organization patterns possible under Title VII of Public
Law 95-602. Moreover they address the following issues which will arise in
the initial years as independent living rehabilitation programs and projects
are developed under Title VII of P.L. 95-602.
What organizational structures are the most efficient
and effective for administering an independent living
rehabilitation program?
What services are needed in an independent living
program, and what programs and agencies should provide
them?
What manpower is required and at what level can case-
loads be handled?
What are the expected outcomes that will result from
given levels of expenditures?
What are the relative costs of supporting various
independent living rehabilitation goals?
What limits should be placed on who is served?
Are there persons too severely handicapped to benefit
from an independent living rehabilitation program?
What are the objectives of the independent living
rehabilitation programs for which reasonable account-
ability can be maintained?
16
Institute of Rehabilitation Medicine - New York Office of
Vocational Rehabilitation
This project is conducted jointly by the Institute of Rehabilitation
Medicine and the New York Vocational Rehabilitation Agency. Special staff
has been assigned by both organizations to the project, consisting of the
following specialists:
- Vocational Rehabilitation Counselor stationed by the
vocational rehabilitation agency with the IRM staff.
- Physician - IRM staff.
- Psychologist - IRM staff.
- Social Worker - IRM staff.
- Public Health Nurse - IRM staff.
- Occupational Therapist - IRM staff.
- Physical Therapist - IRM staff.
- Architect - Consultant.
- Home Economist - Consultant.
The basic objective of this project has been to deliver a full range of
comprehensive services to severely handicapped neuromuscular diseased patients
including a thorough medical evaluation developed by the Institute's
Neuromuscular Disease Center team of scientists and physicians and evaluation
and intervention by a psycho-social and vocational team. Following the
comprehensive medical evaluation, clients are provided medical services and
equipment, as appropriate, usually on an outpatient basis. Rehabilitation
is carried out with focus on the individual's home, family and work situation.
Counseling in emotional adjustment to these progressive diseases, use of
aids-to-daily-living, housing and transportation modification, and family
counseling are included in project focus.
Over the past three years, the project staff have attempted to develop a
wide range of coordinated working relationships with key community agencies,
especially the New York State Division of Vocational Rehabilitation, the
Muscular Dystrophy Association and others as the program develops to meet the
needs in the community.
17
The project accepts referred persons, age 13 and older, residing in the
Metropolitan New York Area who are not able to benefit from available rehabil-
itation services at present but who might benefit from special types of
extended evaluation procedures and other prevocational services or who may
possess potential for improving their independence in daily living. During the
initial years, selected patients of the Institute of Rehabilitation Medicine,
applicants of the New York State Office of Vocational Rehabilitation and
residents of long term care institutions made up the project's clientele.
The project utilizes State Agency case service funds to provide client
services whenever possible. State Agency Innovation and Expansion funds,
as available, are applied to the development of new services. In addition,
providers utilized by the project make service contributions supported by
private and voluntary funding. The Muscular Dystrophy Foundation is
currently supporting neuromuscular disease treatment and research at the
Institute. Medicaid and Medicare funds are applied when possible to meet
medical costs.
An advisory committee, consisting of representatives from the regional
office of the New York Rehabilitation Agency, selected community programs
such as the Muscular Dystrophy Association, and the New York University
Research and Training Center, provides guidance to the project in such areas
as assessment of the goals, procedures and findings of the project and plans
for dissemination and utilization of project results.
For most of the clients in the project, improvement in functional
capacity has not been possible, but maintainance of present capacity is
possible only through the services provided by the project. Without these
services they would gradually lose functional capacity and become less
independent in their families and communities, and in some instances their
general functional loss would result in institutionalization.
18
Policy Implications. Under Part A of Title VII of P.L. 95-602, the State
Agency administering the approved State plan for independent living must use
not less than 20 percent of the Federal funds received by the State for grants
to "local public agencies and private nonprofit organizations for the conduct
of independent living services" unless such use of Federal funds is found by
the Commission of the Rehabilitation Services Administration not be be feasible
in that State.
This project as well as the University of Washington School of Medicine
project in Seattle, described below, could very well serve as prototypes or
models for medically oriented projects for independent living funded by the
State Agencies under Part A of P.L. 95-602.
The New York project has an advisory committee, but that committee has
no consumer representation. The Seattle project does not have an advisory
committee. It would seem desirable that projects funded under Part A of
P.L. 95-602 have advisory or policy committees which include consumer, pro-
vider, and other appropriate representation.
The New York project also includes within its design the provision of
rehabilitation services for independent living to individuals whose functional
capacities cannot be improved but can be maintained or stabilized. It is
critical that this concept be included in independent living projects and
programs under P.L. 95-602, as this is particularly important for many people
with multiple sclerosis, mental disorders and other severely disabling conditions
that are progressive in nature and whose functional capacities decline over time.
Department of Rehabilitation Medicine - University of Washington
The project operated by the Department of Rehabiliation Medicine, Univer-
sity of Washington in Seattle, is the second of the two projects demonstrating
the role of a Comprehensive Medical Rehabilitation Center in the administration
of a rehabilitation program for independent living.
19
This project is similar in many respects to the project operated by the
Institute of Rehabilitation Medicine and yet it differs in many other respects.
It, like the New York project, is sponsored by a medical school. While not
conducting the project jointly with the State Vocational Rehabilitation Agency,
the Department of Rehabilitation Medicine in Seattle operates its project in
close association with the Washington State Vocational Rehabilitation Agency.
In fact, vocational rehabilitation counselors who are employed by the State
Vocational Rehabilitation Agency are housed with the project staff. Perhaps
the greatest differences between the New York project and the Seattle project
are in their staffing patterns and their respective clientele.
The professional staffing of the Seattle project is as follows:
- Vocational Rehabilitation Counselors
- Psychologist
- Physiatrist
- Behavioral Psychologist
- Social Work Aide/Psychometrist
- Work Evaluator/Placement Specialist
The purposes of this demonstration are to (1) comprehensively evaluate
the rehabilitation needs of severely disabled individuals, and (2) organize
state agency activities and community resources to provide increased services
and care to the severely disabled.
The specific procedures used by the project include:
Interviewing severely disabled people to determine their medical,
housing, transportation, educational, vocational, economic, and other rehabil-
itation needs.
Recommending and providing appropriate rehabilitation services, based on
interviews and further information gathered from the individual evaluations.
20.
Evaluating clients to determine their vocational training and counsel-
ing needs. Traditional vocational evaluations are employed including the
administration of interest, aptitude, and achievement tests and on-the-job
observation.
Readministering interviews and evaluations such as those described above
after services have been provided to determine whether clients have benefited
from the services. Rehabilitation services continue as long as the need for
them is present.
The Seattle Independent Living Rehabilitation Project was originally
seen as an additional function of the Department of Rehabilitation Medicine's
Vocational Unit. In practical terms, the staff of the Vocational Unit provide
vocational rehabilitation services to those clients displaying vocational
potential and provide independent living rehabilitation services for the most
severely disabled clients, thereby increasing their ability to live more
independently or to enter into vocational rehabilitation activities.
As originally designed, priority in acceptance into the project was to
be given to individuals with catastrophic disabilities, such as central
nervous system disfunction, multiple orthopedic or neuromuscular disability,
severe cardiac disorders, chronic obstructive pulmonary diseases, and the
severely retarded and psychotic mentally ill. Severely disiabled
clients from the inpatient program are placed in the independent living
rehabilitation project upon their discharge from University Hospital's
physical rehabilitation program (Department of Rehabilitation Medicine).
Outpatient clients are accepted into the ILR program if their vocational
evaluation indicates that they are not ready for vocational rehabilitation.
Because of the difficulty in placing severely disabled persons in gain-
ful employment, the project has found it necessary to utilize a more intensive
21
placement approach. When a client is felt to be ready, the staff arranges
for vocational evaluation in the "job station program." The job station
program allows clients to work in four to six different job situations for
short periods of time. The client has the opportunity to sample different
jobs while the job supervisors evaluate the person's work skills. At the end
of the job station experiences, the staff will recommend job placement or
further vocational training, or will state that the client is not prepared
to re-enter employment.
A related issue deals with the actual placement of the severely disabled
in a job situation. Historically, most placement efforts have been dependent
on "cold calling" (calling employers who are unknown to counselors) or "house
accounts" (employers with whom counselors have personally dealt in the past).
A broader approach is thought necessary in order to increase employment rates
of the severely disabled. This approach uses "employment salespeople," staff
who specialize in educating employers, consulting with them about work envi-
ronment and tasks within their businesses that are suitable for severely
disabled people, and psychologically preparing employers and other employees
for the presence of the severely disabled worker.
During the third year increasing interest and increased project activity
was given to client advocacy. A major emphasis is directed towards those areas
viewed as most critical and most lacking: housing, transportation and atten-
dant care. In addition to "group advocacy" the project is also stressing
"individual advocacy" to impart advocacy skills to the client so that if
needed in the future, the client will be able to advocate independently.
During the third year, the project moved toward more specialization in
its service delivery. In prior years, clients were randomly assigned to
22
counselors; thus, individual counselors dealt with various types of disabil-
ities. Now, each counselor works with only one type of client. Also, the
project is seeking to limit its population to the elderly disabled, quadri-
plegics, and victims of multiple sclerosis. This will create a situation in
which the three counselors will work with 15 to 20 clients, all with similar
disabilities, and who are therefore likely to have similar needs.
Policy Implications. As indicated earlier, this project could well serve as
a prototype for the development of projects by the State Vocational
Rehabilitation Agency under Part A of P.L. 95-602. The stationing of
vocational rehabilitation counselors with project staff has resulted in better
understanding by the counselors of the capabilities and service needs of
project clientele and severely disabled people in general, and the methods
and techniques that can be employed to bring about successful job placements
and/or greater independent in carrying out the tasks essential to normal
family and community living.
Utah Division of Rehabilitation Services
The Utah vocational rehabilitation agency is one of the two State
Vocational Rehabilitation Agencies responsible for the operation of a
rehabilitation project for independent living.
This project is designed to demonstrate how to organize a comprehensive
rehabilitation services program for the most severely disabled people known
to the State Vocational Rehabilitation Agency who have been excluded from
the vocational rehabilitation program because of the severity of their
disabilites. The clientele of the project have disabilities considered
catastrophic, such as central nervous system dysfunction, multiple ortho-
pedic or muscular loss, muscular dystrophy, multiple sclerosis, cerebral
palsy, epilepsy, severe cardiovascular conditions, severe kidney disease,
23.
severe rheumatoid arthritis, deafness, blindness, and other severe neurolo-
gical or orthopedic loss or disability. Some clients not from state agency
closure lists are solicited from the community.
Organizationally this program operates as a separate unit within the
Utah State Vocational Rehabilitation Agency, utilizing all of the agencies
central services. It operates on a parallel with the vocational rehabilita-
tion program, borrowing, as necessary, time-proved principles, such as, the
client-counselor model, where they may be appropriately applied and altered
when necessary. Two experienced rehabilitation counselors function full-
time in the project as well as an engineer on a half-time basis.
The project develops and provides many broad services to severely
disabled people that are not routinely available to all rehabilitation
clients, such as assistance in mobility, communication, social activities,
and those activities necessary to maintain and restore general life functions.
While results of this project may not lead to a significant number of the
severely disabled people achieving vocational goals, it is expected that
their ability to become more self-sufficient and lead more independent
lives will be greatly improved. In many cases, such improvement will
reduce institutional care and a person's lessening of dependence on govern-
ment and non-profit agencies.
The Utah project, as well as the other projects, identified trans-
portation, attendant care and accessible, adequate housing as the most
necessary and pressing needs of the severely disabled. In an attempt to
meet the housing need, the Utah project established a transitional living
center for its clients. This is a time-proven living arrangement first
widely used to deinstitutionalize mentally retarded individuals. The Utah
24
project has renovated a small cluster of housing units (sixplex) which are
accessible (barrier free) and adequate for most of its clients. The purpose
of the facility is to teach independent living skills to severely disabled
people in order to prepare them for community living. Because it is a
transitional living arrangement, priority is given to clients who are most
likely to be either employed and therefore able to afford their own housing
or will be capable of finding other housing arrangements.
After the project had been in operation for a short while, project
staff realized a great need for greater knowledge about prosthetic appliances
and other assistive devices. As a result, the project employed an engineer
on a half-time basis, not only for this purpose but also to assist in
adaptations of various devices and equipment for project clients. Through
this innovative action, an inexpensive TTY (a telephone hook-up system
used by the deaf) is now used by cerebral palsy clients who have severe
communication impairments.
Policy Implications
The Utah Project presents a prototype of the organizational structure
and programs that State Vocational Rehabilitation Agencies might wish to
develop under Part A of Title VII of PL 95-602 for the direct provision of
rehabilitation services for independent living purposes. The Utah Program
is a discrete rehabilitation program and yet it utilizes in common with the
vocational rehabilitation program, the central supportive services of the
parent agency. Moreover, the program is operated in close association with
the vocational rehabilitation program so as to benefit from the services of
that program for clients who develop an employment potential. Further,
many of the conditions of the state plans required under Part A of PL 95-602,
such as the development and use of the IWRP, the use of similar benefits
25
and the planning and development of innovative services to meet the critical
needs of severely disabled people for independent living have been met head
on and fulfilled under the Utah Project.
Texas Commission for the Blind
The project of the Texas Commission for the Blind is the other of the
two projects operated by State Rehabilitation Agencies. This project serves
multi-handicapped blind people living in the San Antonia-Bexar County Texas
area who in addition to being blind have one or more of the following secon-
dary disabilities: chronic mental illness, central nervous system dysfunc-
tion, orthopedic impairments, cardiac disorders, developmental disabilities,
chronic pulmonary disorders and severe auditory disabilities.
Due to the innovative nature of this project and the lack of previous
historical staffing patterns for working with blind people with additional
severe disabilities, the agency decided upon a team, rather than on individual
counselor approach to each client. The team members included the following:
(1)
Rehabilitation Counselor
(2)
Rehabilitation Teacher
(3)
Placement Specialist
(4)
Orientation & Mobility Specialists
(5)
Community Service Aide
(6)
Visually handicapped children's caseworker
(7)
Supervisory & technical and consultative staff
The unique needs of the blind-multi-handicapped individuals require the
services of highly tranined and qualifed specialists. Also, the location
of this project necessitates the employment of staff who are bilingual, and
fully knowledgeable of Mexican-American cultural customs, values, family
relationships, and attitudes. Specialized training was provided for project
staff in these cultural matters. In this connection, it will be noted that
the 1978 Amendments to the Rehabilitation Act required that State agency
26.
staff be able to communicate with minority groups in their native languages,
a requirement which this project seems to be fulfilling.
This project is unique in that it serves a clientele quite different
from most of the other projects. Where most projects are concerned with
overcoming physical handicaps which result from the client's disability,
the Texas project struggles to overcome experiential handicaps brought on
by the client's sensory deprivations. The primary deficit (blindness) is
further complicated by a secondary disability which may also be sensory (e.g.,
deafness), limb-related, or mental in nature.
The Texas project is active in client advocacy. However, its advocacy
activity is most often of the group type. Most of these clients are viewed
as being unable to successfully advocate for themselves. Because of this,
one full-time staff person (Community Service Aide) is responsible for
securing appropriate and timely services for the clients.
Although the advocacy role of the agency is essential in securing
services for its clients, the rehabilitation teacher is also an asset in
securing these services. There are many societies and organizations, both
public and private, that cater to specific disabilities. However, few of
these entities employ staff who have had experience with blind people;
therefore, many are reluctant to accept a blind-multi-handicapped client
even when the service to be delivered pertains to the disability an entity
is staffed to serve. This is where the rehabilitation teacher becomes
extremely important. The project is designed to allow this professional
sufficient time to accompany the client to the service agency. The teacher
works with both the client and the staff while at the agency; this in-depth
involvement lessens as the client and the service agency staff feel comfortable
with the situation.
27.
Another important role of the teacher is to help the client transfer what
is taught at the service agency to the living situation. This is very
essential for individuals who have visual handicaps. As well as aiding in
learning and transfer processes, the teacher also has the abilities and
responsibilities to teach many skills to the clients themselves. Most often
this is done in the particular environment in which the client lives, thus
negating the need for client transportation or for transferring skills
learned in a rehabilitation facility to a residental setting.
A major occurrence for this project was the granting of a supplemental
award to enable the project to take a more in-depth look at the needs of
the blind-mentally handicapped (emotionally ill) client. Staff of this
project are acutely aware of the lack of knowledge that exists concerning the
mentally ill, especially the blind mentally ill. Due to this, the project
is giving priority to blind mentally ill individuals when accepting new
referrals.
Policy Implications. Part C of Title VII of P.L. 95-602 authorizes grants to
state rehabilitation agencies to provide independent living services to older
blind individuals. In all essential aspects, this project would seem to be
the kind of program envisioned under Part C and would seem to be a good
model for other state agencies to replicate. The Texas project gives
priority to the elderly blind; its range of services to extremely broad;
it utilized all available resources and agencies; and it has developed
innovation approaches to meet the multitude: of problems confronting blind
people with multiple handicaps.
Center for Independent Living Inc.
The Center for Independent Living is a consumer-based, self-help
organization founded seven years ago to help people with severe disabilities
28
maximize their opportunities for independent lives. Since its inception it
has worked closely with other agencies, both public and private, on the
development and expansion of programs serving people with severe disabilities.
It has received financial assistance from private foundations, the general
public, the California Department of Rehabilitation, RSA, and local city
and county governments for its innovative programs of non-medical services
and its training programs for professionals in medical and vocational
rehabilitation and social services. CIL is almost entirely staffed by
people with severe disabilities. Its emphasis over the years has been to
develop those services that are not provided sufficiently or at all by the
medical-vocational rehabilitation system but that are essential to a
severely disabled person who wishes to live as independently and as pro-
ductively as possible.
CIL views the rehabilitation system as a network of public and private
agencies in which several serious gaps exist. Psychological factors, for
example, are often ignored as barriers to rehabilitation. The Comprehensive
Service Needs Study survey of providers found that the motivation of the
severely handicapped person was often the major reason for the failure of these
individuals to be accepted into the program. The study's survey of handicapped
individuals uncovered extensive despair and depression, extremely poor self-
image, and general isolation. The CIL program is based on the assumption that
the best way to energize and motivate such persons is through role-modeling
among the disabled themselves. Included in the energizing concept are peer
counseling, aggressive advocacy for full integration into society, and the
attainment of a sense of full dignity as a person. The concept assumes that
identification and provision of cogent services, such as attendant referral
29
pools, equipment repair, and inventories of accessible housing, depend
largely on steps taken by disabled individuals themselves.
Established formal agencies, both public and nonprofit, often have
traditions and limitations which result in gaps and occasional insensitivity
to the needs and preferences of the disabled. There will always be those whose
needs are such that no public agency can address them-for example, it may
take years for a recently blinded or spinal cord injured person to emerge
from depression and actively seek to realize his maximum potential. Sex
counseling, initiating lawsuites against landlords, and demanding action
from public officials are some of the messy, controversial, and essential
activities for severely disabled persons.
There are questions about consumer self-help groups which need to be
answered, including (1) how well does self-help work? (2) what does it cost?
and (3) are there unintended consequences associated with self-help activities?
The CIL project is intended to clear up the issues surrounding this innovative,
but controversial, approach to service delivery.
The principal objective of CIL is to show that a consumer-based
organization can deliver services which may not otherwise be provided to
severely disabled persons. A peer counselor approach to problems solving is
an essential difference between this project and the other projects. The
project is designed to facilitate independent living within the community
for people with severe disabilities as well as to provide assistance in
vocational exploration and job placement.
CIL has developed and expanded its services to help clients establish
eligiblity for services, find attendants and transportation, learn financial
management and self-care, and find independent living situations in the com-
munity. The experience of CIL staff members in serving the severely disabled
30
will provide valuable information on the service gaps and economic and social
barriers which confront the most severely disabled. CIL staff has identified
many service gaps, in response to which wheelchair repair, attendant referral,
financial advocacy, and employment services have been created. Peer counselors
serve as the link between existing services and the identification of new
services. With client involvement, CIL hopes to see the development of new
services in close cooperation with the Department of Vocational Rehabilitation
and other service agencies. Possible examples of such services include ex-
panded housing programs, transportation services, and training of health
professionals.
One of CIL's major thrusts has been in the area of deinstitutionalization.
Deinstitutionalization is a long and arduous process, involving a myriad of
resources, many of which are not known by the institutionalized person. A
difficult problem for many institutionalized individuals is the accumulation
of enough funds to move out of an institution. The greater percentage of
the funds that support an individual while he is institutionalized go directly
to the institution. Under SSI, an individual receives only $25 a month to
cover personal needs, i.e., toilet articles, clothing, ect. This makes it
extremely difficult to accumulate the necessary funds to move into a non-
congregate care setting.
The psychological adjustment is another difficult barrier to overcome.
This is especially true for individuals who have been institutionalized since
an early age. One of the primary contributors to this problem is the way
decisions are made in institutional settings. Most decisions made in
institutional settings are made without consulting the individual affected
by the decision. This lack of experience in participating in or making
decisions adversely affects the individual when he attempts to begin a life
31
of independence. In cases such as this there exists a real need for some
types of assistance in making a transition from custodial care to
independent living.
The CIL project feels there are four critical areas to be dealt with
in making this transition: (1) adequate and accessible housing, (2)
adequate and accessible transportation, (3) adequate care, and (4) counsel-
ing on how to organize and plan for these services. The first three services
are available if an individual has the knowledge and fortitude to persevere
through the endless paperwork and the sometimes long delays. The fourth
ingredient is rarely available, and thus the acquisition and retention of
the first three are difficult.
It has- been CIL's experience that attendant care is the most problematic
of the four issues listed above. The problems of attendant care are vast.
The initial problem is finding adequately trained attendants. This is not an
easy task, partially because of the type of work and also because of the
salary that accompanies the job. In most instances, salaries are paid on an
hourly basis and at a minimal wage scale. Secondary to this problem is that
of finding the quality of attendants normally found to be necessary. Because
a wheelchair-bound individual needs attendant care only at certain times of
the day, and because. salary for an attendant is based on hourly wages, most
handicapped individuals utilize more than one attendant a day. It is not
uncommon to have one attendant for morning needs, one for evening meal
preparation, etc., and one to aid in getting ready for bed. A tertiary
problems is finding replacements wheneven an attendant is sick, takes a
vacation or quits.
All of these problems require the disabled person to become a good
supervisor/employer. That is, the person must be able to instruct the
32
attendant, manage the attendant's time, keep accurate records of the various
attendants' time in order to pay each attendant his proper wages, and dismiss
an attendant if the need arises. Thus, a program such as CIL provides a
needed service for those wishing to increase their independence.
Finding adequate and accessible housing is always a problem for the
disabled. CIL has found it necessary to provide a housing referral service
which keeps a list of housing that meets the needs of the handicapped. Even
with this referral service, adequate housing cannot always be found. This
may be because of cost or because of distance from work, shopping centers,
or other needed services. The problem of cost can sometimes be overcome
by sharing an apartment or house with other disabled persons. Accessible
housing is not a problem that is going away; on the contrary, it is a problem
that requires constant monitoring. CIL advocates that all new units be made
accessible for all people. However, due to lack of community understanding
and support, most new housing continues to be prohibitive to the severely
disabled. Because of this, many disabled people are restricted to those
areas of the city or community where accessible housing exists. Sometimes
this creates hardships for those whose work is a considerable distance from
where they live.
Transportation needs are being met with greater frequency than in the
past. Many service delivery agencies provide accessible transportation to
those who utilize their services. The Department of Rehabilitation in California
provides transportation for those clients who need the transportation in order
to carry out their rehabilitation plan. However, transportation for non-
service-oriented activities is not always readily available. CIL attempts to
fill these gaps through its van program. It also has an automobile alteration
33
service which alters automobiles (mostly vans) for use by the physically
disabled.
CIL is moving toward a closer working relationship with various service
delivery agency. This is a adeparture from its previous posture of non-
alliance with what was perceived to be the inflexible, recalcitrant system.
However, over the course of this project, CIL staff have begun to work more
closely with many service delivery agencies, and this, plus other changes,
has caused the staff to change their posture.
One of the changes involves the selection of clients from the Extended
Evaluation category of the Department of Rehabilitation. Originially, CIL
had as one of its objectives the selection of clients who had been rejected
by the Department of Rehabilitation on the basis of severity of disability.
However, since CIL began its project, the state agency has changed its
emphasis and now places priority on serving the severely disabled. The
result of this change in focus is that many people who formerly would have
been rejected for services are now placed in Extended Evaluation status
because of the uncertainty surrounding their vocational capabilities.
CIL now provides peer counseling service to those severely disabled
people in Extended Evaluation in order to improve the prospects for
success in the rehabilitation system. This move is also seen as an
opportunity to strengthen the working relationship between the two entities.
Policy Implications. Part B of Title VII of P.L. 95-602 authorizes grants
for the establishment and operation of independent living centers. The model
for this legislation is the Center for Independent Living in Berkeley,
California. Obviously, future centers that might be developed over the
country with Title VII funds have a well established model in the Berkeley
Center.
34
Summary of ILR Demonstration Projects
Project Location
Area of Concern
Emphasis
Geography
Age Emphasis
Application to
P.L. 95-602
New York
Medically-Oriented
-Continuing health care
Urban
All ages -
Part A, Section
Physical Restor-
-Equipment for greater
Some under
705(a) (8) of
Institute of
ation Services
independence and life
18
Title VII
Rehabilitation
maintenance
Medicine/New York
Severely handi-
-Physical therapy
State Rehabili-
capped persons
-Rehabilitation
tation Agency
with progressive
counseling
diseases
-ADL training
-Suitable housing,
Functional levels
recreation, trans-
decline over time
portation, prevoca-
tional services,
Long-term services
genetic counseling
Seattle
Medically-Oriented
-Group advocacy
Urban
All ages,
Part A, Section
Physical Restor-
-Housing, Transpor-
many
705 (a) (8) of
University of
ation Services
tation, attendant
elderly
Title VII
Washington,
care
Department of
Physically dis-
-Individual advocacy
Rehabilitation
abled clients
-Specialized service
during and after
delivery
VR services
-Counselors serve 15-
20 clients with
similar disabilities
Salt Lake City
Services to severe-
-To serve clients who
Urban
18-64
Part A of
ly handicapped
have been denied VR
Title VII
State Rehabili-
persons through the
services
tation Agency
State Vocational
-To serve severely
Rehabilitation
handicapped clients
Agency
referred directly
to project
Evaluation of the
-Completion of the
potential demand
IWRP
for ILR services
-Plan of services,
outline. of who will
provide these services
-Goal client is seeking
to achieve
-Maximum benefits
attained in ILR
-Entry into ILR
San Antonio
Service to multi-
-Team approach
Urban
18-64
Part C of
ple handicapped
-Assessment of indi-
Title VII
Texas Commission
blind clients
vidual needs by team
for the Blind
consisting of coun-
Evaluation of the
selor, teacher, place-
extent of ILR
ment specialist, etc.
services
-Services to overcome
experiential handicaps
as a result of sens-
ory deprivations
-Evaluation of ILR
needs of blind-
multiple-handicapped
persons
Berkeley
To demonstrate
-To provide services
Urban
College
Part B of
consumer organi-
which may not be
Title VII
Consumer Self-
zation can
available through
Help Organization
deliver/provide
other agencies
Center for
needed ILR
-Utilization of a
Independent Living
services
peer counselor
approach to solve
To assess problems
problems
of severely handi-
-Advocacy
capped individuals
from a different
theoretical per-
spective
III. THE CLIENTS
The clients served by the projects were, as will be shown, the most
severely disabled. The types of clients varied considerably, however, on such
factors as age, race, type of disability, and educational level. The present
chapter will explore many of these differences, and similaries. The next
chapter will explore the progress made by these clients over time. Both chap-
ters point out, however, that the clients vary greatly in characteristics and
needs, thus requiring highly individualized and unique rehabilitation plans.
Sex, Age, Race and Education
The 362 clients served by the projects were largely male (60% males, 40%
females) with a mean age of 38. The racial composition varies somewhat from
the general U.S. population, with a slightly higher preponderence of minority
groups. These figures must be looked at by project as the exact composition
varied from project to project, usually according to the population character-
istics of the geographical location of the projects. For example, the
Berkeley project had a slightly younger group than other projects as many of
the Berkeley clients attended a nearby university. There was a relatively
high number of Blacks (25%) and Hispanics (5.6%). On the other hand, Seattle
clients were mostly white (89%) and, on the average, older than the general
client population, primarily because many older disabled people received
services in the last year of the Seattle project. New York, Salt Lake and
San Antonio had, proportionately, many Hispanics, few Blacks, and were
similar in age composition (about 38 years old). Only San Antonio had
slightly more females than males. Table 1 summarizes the number of clients
per project, while Appendix Table A-1 presents the age, sex and racial
composition of the population by project.
36
Table 1
Number of Clients by Project, All Years
Project
Number of Clients
Berkeley
82
New York
62
Salt Lake
71
San Antonio
46
Seattle
101
Total
362
The educational attainment of clients was, on the average, lower than
that for the general population, although the percent of clients who had more
than high school education was equivalent to the general population (see
Figure 1). Generally, client educational status was better than status of
the VR population. Why this is so is unknown, but will be explored in the
final report. The projects then, are dealing with a population with low
education compounding their problems in many areas. particularly in seeking
and securing employment. This, taken with the fack that many are minorities,
and the fact that they are very severely disabled, make this group an espe-
cially challenging one for the projects.
Primary and Secondary Disability
The majority of persons listed "three or more impaired limbs" as their
primary disability (56.8 percent) (see Appendix Tables A-2 and A-3). This
percentage would be even higher (65.4%), except that San Antonio specialized
in working with the blind (100 percent of their population). One upper and
one lower limbs impaired (hemiplegia) accounted for 8.5 percent of the
population, as did one or both lower limbs impaired. The remaining 26% were
mostly blind (15%) or otherwise physically handicapped (6.5%). Overall, the
large majority consisted of physically impaired persons.
37
70
65%
U.S.
60
55%
51%
Clients
49%
VR
VR
50
44%
Clients
40
35%
U.S.
29%
28%
30
U.S.
Clients
20
13%
VR
10
0
Less than
High school
More than
high school
or more
high school
Figure 1
Educational Attainment, All Clients at Intake,
VR and U.S. Population
38
The secondary disabilities of this population made them even more
difficult to work with effectively. Over half of the clients listed
secondary disabilities. Of those listing secondary disabilities, 16 percent
were mentally ill, 9 percent were mentally retarded, 15 percent had endocrine
or cardiac disorders, or epilepsy, and 14 percent had respiratory, digestive
or genito-urinary disorders. Even among those whose primary disability was
not listed as three or more limbs, 13.1 percent listed this condition as a
secondary disability. If this figure is added to those with the same primary
disability, it can be seen that a vast majority of the population had
disabilities involving three or more limbs. The other secondary disability
listed included other physical impairments (16%), vision or hearing impairments
(10%), and speech or other impairments (7%). This, taken with the wide
diversity of other conditions, shows that this was indeed a very severely
disabled population.
Severity of Disability
A number of criteria were used to determine severity of disability: the
Barthel Scale; the PULSES profile; the presence of other severe functional
limitations, and; a combination of poor employment history, severe communi-
cation disorder, old age or poor education with a substantial disability.
Barthel scores indicated that 246 of the 362 clients were severely
disabled. This scale was designed to be used primarily with the physical
disabled as a general indicator of a client's independence in mobility and
activities of daily living. As many clients in the project were physically
disabled, it was expected that many, but by no means all, clients would be
rated as severely disabled by this scale. The figures indicate that over
two-thirds of the clients were severely disabled according to Barthels.
39
6%
Blind/
7%
PULSES
Multiply
handi-
10%
capped
Other
Severe
limitation
9%
Substantial disa-
bility with other fac-
tors (See below)
68%
Barthel
Figure 2
Primary Basis for a Rating of Severe Disability*
All Client Groups, at Intake
*
Bases were ranked, so it is important to note that the categories
overlapped a great deal. Only primary bases are presented in this
figure. The rankimgs were as follows:
a) Barthel
b) PULSES
c) Blind/multiply handicapped
d) Other severe limitations
e) Substantial disability combined with poor employment history,
severe communication disorder, old age, and/or poor education
40
Of the 116 clients who were not rated as severely disabled by Barthels,
27 were rated as such according to the PULSES profile (182 of all clients
were severely disabled according to PULSES). The PULSES profile was designed
to be used with the chronically ill and aged population to test their physical
functioning in a restricted environment. As most clients were not in
"restricted environments" (e.g. hospitals, nursing homes, institutions), it
was not expected that PULSES would account for most of the remaining clients.
Twenty-two of the remaining 89 clients were blind/multiply handicapped.
All of these clients were from the San Antonio projects. The combination of
blindness with another disability leads to many limitations, and it is
generally agreed that such clients are severely disabled.
In an attempt to determine the characteristics of those clients not
rated as severely disabled by the aforementioned measures, data on client
functioning were analyzed. Thirty-eight of the clients had a number of the
other severe functional limitations on which data were collected (getting
in/out of bed; sitting for more than one hour; lifting or carrying weights
of about 10 pounds; stooping, bending or kneeling; reaching with both arms;
using hands and fingers; taking medicine operating household appliances;
using the telephone; operating a T.V., radio, or stereo, and; admitting
visitors to the home).
The remaining 29 clients had a substantial handicapping condition in
combination with a poor employment history, severe communication disorder,
older age or poor education.
This section provides for an overview of why the clients were severely
disabled. Chapter V (problem areas for clients) shows how their severe
limitations were reflected in specific problems faced by them.
41
Income and Employment
One would expect household income to be relatively low because of the
mobility or lack of opportunity to work, or to obtain high paying jobs. The
data in Table 2 and Appendix Table A-4 bear out this point. The mean client
income was $3,516.
The mean household income of clients ($7,800 in 1976) is about 70 percent
of that for the general population in 1976, and that percentage decreased to
63 percent in 1978. This is probably due to the inability of income mainte-
nance programs and lower paying jobs (which this population usually get, if
employed) to keep pace with inflation.
If the figures are broken down by race and sex, it can be seen that white
males have larger average incomes than any other group, followed by white
females, than black males and females, followed by other groups. (See Appendix
Table A-5). This further emphasizes the difficulties encountered by handicap-
ped persons who are in the racial minorities. Since, proportionately, there
are a larger number of racial minority groups in the program, this problem
becomes a significant one.
Table 2
Mean Household Income, 1976, 1977, 1978
All Clients and U.S. Population
Clients
U.S. Population
1976
$7,800
$11,165
1977
$8,160
$12,063
1978
$8,100
$12,787*
*
Estimated, based on 1977 figure times a 6 percent inflation
factor. Actual mean is probably higher, but was not avail-
able at the time this report was written.
42
The findings of low income in general are not surprising in light of the
fact that this population consists of persons thought not to have a vocational
potential. They must rely heavily on income of other family members or on
income maintenance programs for support. The findings do, however, point to
the financial need of this population
The fact that families of this group rely heavily upon non-wage income
as demonstrated in Table 3.
Table 3
Largest Source of Family Income
All Clients, 1978
Number
Percent
Money, wages and salary
100
29
Income from self-employment
3
1
Social Security Disability Insurance
91
27
Supplemental Security Income
74
22
Old Age Survivors Insurance
12
3
Unemployment, Veteran's, private
pensions, workmen's compensation
24
7
Other dividends
23
7
Aid to Families with Dependent
Children
8
2
Railroad Retirement and Disability
Benefits
3
1
Non Applicable/Don't know
3
1
341
100
Most of the clients relied on SSI or SSDI as their primary source of income
(65 percent). (See Figure 3.) About one-half of all clients also listed this as
their family's primary source of income. Less than one-third listed wages,
salary and income from self-employment as their largest source of family
income. Of those persons, very few (5 percent) listed such income as their
own (clients) primary source of income. (Appendix Table A-6 presents this
data broken down by sex and race.)
43
Surprisingly, 18 percent of all clients were employed at intake. This
includes full time, parttime, and sheltered employment. About one-third have
never worked, while 47 percent have worked in the past, but were not presently
employed. Appendix Table A-7 breaks this information down by sex and race.
The fact that many have never worked, taken with low average educational
attainment means that many in this group have low or no work skills. If
employment is to be a goal for these persons, extensive vocational training
will have to be provided.
Comparison to the General VR Population
If one compares the characteristics of the project population to those
of clients rehabilitated in the VR program (see Rehabilitation Services
Administration Information Memoranda RSA-IM-77-71, June 8, 1977, and RSA-IM-
77-21, December 22, 1976), one can see many differences. Obviously, the
project population is more severely disabled. Fourty-one percent of those
rehabilitated in the VR program were listed as severely disabled. The
entire project population was at least severely disabled and many were
totally dependent according to PULSES and Barthel indicators. Severity may
also be reflected in the fact that 57 percent of the project population had
primary disabilities involving three or more limbs, while only 1.5 percent
of the VR population had such a condition.
The clients in the projects were older (mean age of 38 as compared to
32 in the VR population). Sex and racial characteristics were almost
identical. The project population had a significantly higher percentage of
clients who had completed a high school education (55 percent VS. 42 per-
cent). The mean family income was substantially higher for the project
population ($7,800 vs. $3,200).
44
The reasons for the income differences are not entirely clear. Perhaps
part of the reason concerns the fact that the definition of income for use in
the R-300 (the survey of the VR population) is vague. It is left to the
client to decide what is and what is not income (salary, SSI, SSDI, etc.).
Some guidelines are given, but in the end, the decision is up to the client.
"It is suggested that the counselor make no effort to
give the individual any instructions or definitions as
to what constitutes a 'family' or what should be in-
cluded or excluded from 'income,' but merely ask the
question
"
(RSA R-300 Manual, 1974).
The counselor may use some guidelines which are included in the R-300 Manual
if the client asks questions, but he is not required to do SO. In the projects,
the sources of income are listed on the reporting form and gives the client a
better understanding of what is considered income.
A more important factor may be related to the number of clients living
with parents or others. Only 8 percent of the project population lived alone,
while twenty-four percent of the VR population lived alone. Potential house-
hold income should be lower for one-person households because of fewer
potential wage earners. For project clients living alone, mean income was
only $3,630. It may also be the case that more of the project clients than
VR are living with parents as their degree of severity disability leaves them
highly dependent. It is known that about one-third of the project clients
live with parents. The comparable statistic for the VR population is unavail-
able. If a higher percentage of project clients are living with parents it
may help to explain their higher mean household income. Parents are more
likely to have been on the work force longer and at higher income levels
than spouses and others the client may be living with, and certainly would be
higher than client's income if he were living alone.
45
Some support was found for this argument. Mean household income for
those living alone was substantially lower than for those living with others
$3,630 VS. $10,040). If this difference holds true for the VR population,
it helps to explain the mean income differences between project and VR clients
as the VR population has three times the number of project clients living
alone.
IV. PROBLEM AREAS FOR CLIENTS
The clients who were in the projects were more severely disabled than
those in the regular vocational rehabilitation program. Typically, they
remained unserved by the vocational rehabilitation agencies. Consequently,
little was known about their needs and to what degree their functioning in
society could be improved.
The Comprehensive Service Needs Study made one of the first attempts to
determine their needs, and demonstrated that need was great, especially in
the areas of transportation, equipment, service provision and in household
management. Information on needs collected by service providers can
substantially add to the knowledge base on the most severely disabled
population. Information on change over time can demonstrate how independent
living rehabilitation programs can improve client functioning, and which
areas remain a problem for clients even after the provision of services.
The projects of the present study collected client information on needs
and problem areas on a yearly basis for each client in the program. This
information was collated by The Urban Institute and analyzed to provide
information on what problem areas can be expected in serving the client
group and how needs can be reduced through the provision of services. The
results verify the finding of the Comprehensive Needs Study that the needs
of this population are great. They also show that significant improvements
can be made for clients in their functioning, and that several problem areas
remain, even after extensive rehabilitation service has been provided.
47
To aid the reader in understanding the masses of data collected, this
chapter has been broken down into several areas, as follows:
Equipment Needs
Service Needs
Household Management Needs
Social Interaction
Transportation
Architectural Barriers
Living Status
Equipment
A major barrier to the ability of a client to leave his home and engage
in work or social activities is the lack of needed equipment. If equipment
such as weheelchairs, helpers for limbs, hearing aids and the like are not in
the possession of clients who need them then those clients will be restricted
not only in social functioning, but also in basic life activities such as
getting in and out of bed, going from room to room, or being able to communi-
cate with others. Equipment needed then, may be used as a partial indicator
of functioning. If client equipment needs are basic (helper for limbs,
wheelchairs, etc.) it would generally indicate limited functioning. If, on
the other hand, they are not basic (e.g., specially equipped autos, artificial
limbs for cosmetic purposes), it can be assumed that most of his minimal
functioning is intact.
This section will explore equipment needs by examining both the number
and types of client equipment needs. It is important in this section to note
the difference between "need" and "unmet need" as the protocol questionnaire
asked questions on each. "Needs" will refer to equipment needed by the
48.
client regardless of whether or not he has them. "Unmet need" will refer to
equipment needed, but not obtained by the client. Unmet need is a more potent
indicator of client status as it relates more directly to client problems or
limitations. This chapter will focus on unmet needs, although reference will
occasionally be made to need.
The protocol asked questions on need for and use of the following types
of equipment.
Helper for upperlimb
Manual wheelchair
Helper for lower limb
Trapeze or bathtub lift
Artifical limbs/hands
Hospital bed
Back brace
Specially equipped autos or
Cane, crutches, walker
other motorized vehicles
Transfer chair or board
Aids for vision
Typewriters
Seeing eye dog
Tape recorders
Hearing aids
Ramps
Speech aids
Special telephone equipment
Respiratory aids
Motorized wheelchair
Dentures
Others
The first step in the analysis was to examine the number of unmet
equipment needs. Three methods of analysis were used--Mean number of
unmet needs, range in the number of needs, and number of clients who
experienced a reduction in the number of unmet needs. All approaches show
that unmet equipment needs were reduced over the years, and indicate that
the projects were successful in meeting such needs, although a number of
needs remained.
Table 4 presents the mean number of unmet equipment needs over the years.
Table 4
Mean Number of Unmet Equipment Needs, at Intake and
in 2nd or 3rd Year
1976 and 1977 intake groups (combined)
1976 intake groups
intake 1.55
intake
1.19
2nd year 0.79
3rd year 0.85
49
The mean number of unmet needs decreased substantially over the years,
as verified though the use of correlated t tests (for the'76 + '77 intake
groups, t = 7.08, df = 276, significant at .05 level; for the '76 intake
group, t = 2.26, df = 128, significant at .05 level). A separate analysis on
the '76 group between years 2 and 3 showed no siginificant difference in
mean number of unmet needs (t = -0.43, df = 128, not significant). It
appears that the projects met most client equipment needs in the first year of
the client's program.
It is also of interest to note that the projects were able to reduce
the needs of the 1977 intake group to the same level after the first year
as the 1976 intake group, even though the average need of the '77 group
was substantially higher (2.10 for the '77 group at intake as compared to
1.19 for the '76 group at intake).
There are two possible reasons for the discrepancy. Either needs were
actually the same at intake for both groups, but were not fully reported
for the '76 group, or the needs were different because of a more severely
disabled population. The characteristics of the populations were similar
in terms of demographics, and type and degree of severity. This casts
doubt on the latter hypothesis. It is likely then that the number of
needs were the same, but were not identified at intake and hence not re-
ported. As projects gained experience in identifying need, they were
more likely to report them at intake.
Finally, it should be noted that an average of 0.85 unmet equipment
needs existed for the 1976 intake group in their third year. Part of the
reason for this is the appearance of non basic needs in latter years. As
basic needs are met (wheelchairs, helpers for limbs, ect.) other needs may
become possible. For example, some clients would not consider a specially
50
equipped auto a need until their necessary helpers for limbs become
available. More discussion on basic and non basic needs is presented when
types of needs are discussed, hence this point will not be elaborated here.
Table 5 presents the number of clients with unmet service needs, by
number of unmet equipment needs.
Table 5
Number of Clients with Unmet Equipment Needs, by Number of Unmet
Equipment Needs 1976 and 1977 Intake Group
Number of Unmet
1976 intake group
1977 intake group
Equipment Needs
Intake
3rd year
Intake
3rd year
0
47
50
25
66
1
23
31
22
25
2
7
13
19
13
3
10
7
14
6
4
6
3
11
3
5
6
1
6
1
6
3
-
4
-
7
-
-
1
-
10
-
-
1
-
As can be seen, the range in number of equipment needs is quite large
from 0 to 10. The shift in range in numbers of unmet equipment needs is
obvious. Clients in general had fewer needs after being in the program for
any length of time. The data verify the analysis of the means presented above.
That is, needs were reduced. The 1977 intake group had more needs at intake,
but were reduced to the same level as the '76 group, presumably because of
the projects gained experience in need identification. It also verifies that
substantial unmet needs remain for these clients. The most important fact
brought out by Table 5 is that there is a wide range in the number of equipment
needs by the clients. This fact taken with the finding that the kinds of
equipment needs were varied (to be presented later in this section) indicates
that the client group was diversified, requiring highly individualized
rehabilitation plans.
51
To analyze unmet equipment needs on a more individual level, Table 6
was constructed to show how many clients experienced need reduction. As can
be seen in the first year of service provision, 44% experienced a reduction
in the number of needs, while 40% remained the same and 16% experienced an
increase. (Of those who remained the same, about three-quarters had no needs
at intake or in year 2.) The later two percentages may be a result of change in
perceived need as the client progresses through the rehabilitation program.
That is, as the client has his basic needs fulfilled, other, non basic needs
emerged. Information to verify this contention is presented below.
Table 6
Number and Percent of Clients who Experienced Change in
the Number of Unmet Equipment Needs
1976 and 1977 intake groups
New Change
Number
Percent
Reduction
118
44
No change
108*
40
Increase
45
16
*75 of these clients had no unmet needs
In general, then, it has been shown that the number of unmet equipment
needs were reduced over the time the client was in the project, which indicates
improved client status. Some questions remain however, on why certain clients
had more needs after being in the projects, what types of needs existed, and
how those needs changed over time. These questions can be answered by
analyzing the types of unmet needs reported on the protocol data form.
There were a variety of equipment needs by the clients. The actual
number of each type of needs were small, and to present them may lead to
misleading comparisons. However, by looking at general trends one can discern
52
a definite pattern concerning the change in types of unmet needs over the
years.
Two categories of needs are presented below-basic and non basic. The
Urban Institute created these categories only for presentation in this
report. They are not, in reality, mutually exclusive, but rather, general
categorizations. The inclusion of certain items in one or the other cate-
gory may be open to question, and because some items are listed as non
basic, it is not meant to say that they are not important, or that for some
people they are not basic. For example, an artificial limb may be important
for some persons, but more often than not the limb is provided for cosmetic
purposes it is usually not essential for basic life functioning. The
categories of basic and non basic equipment needs are as follows:
Basic
Non Basic
Helper for upper limb
Artificial limbs
Helper for lower limb
Typewriter
Back brace
Tape recorder
Cane, crutches, walker
Ramp
Transfer chair or board
Special telephone equipment
Motorized wheelchair
Hospital bed
Wheelchair, manual
Specially equipped autos
Trapeze or bathtub lift
Seeing eye dog
Aids for vision
Dentures
Hearing aids
Speech aids
Respiratory aids
Mean numbers of basic and non basic equipment needs are essentially the
same at intake (basic needs mean = .70, non basic needs mean = .78, t = 1.23,
df = 270, n.s.). At year two however, there were fewer unmet basic needs
(mean = .12) than non basic needs (mean = .23) (t = 3.09, df = 270, sig.).
It was also found that more non basic than basic needs emerged from year 1
to year 2 (non basic mean = .25, basic mean = .15, t = 2.23, df = 270, sig.).
53
No significant change occurred between years two and three for the 1976 intake
group. It appears then that the basic needs were focused upon by the projects,
and that as those needs are met, more non basic needs tend to emerge.
Information on specific types of equipment needed is not presented here
as the numbers of clients in need of each type of equipment are small and
figures on them could be misleading. It can be said, however, that all equip-
ment types were listed at least once, and the most frequently reported unmet
equipment needs at intake were wheelchairs, transfer boards, trapeze or bath
lifts, ramps, specially equipped autos, special telephone equipment and
hospital beds. As was demonstrated previously, the basic needs tended to
be met more often than the non basic needs. In fact, only non basic needs
increased in frequency over the years--typewriters, tape recorders and
specially equipped autos.
The projects were successful in getting needed equipment to clients.
The mean number of equipment needs were significantly reduced over the
years and most clients experienced a reduction in the number of types of
equipment needed. A significant number of needs remained for some clients,
even after three years, but an analysis of the types of unmet needs re-
vealed that this was largely due to the fact that after the basic equip-
ment needs were met, new needs emerged because of the clients' increased
potential to use them.
Service Needs
Unmet service needs followed the same general patterns as unmet equip-
ment needs, but there was generally even greater improvement in this area.
Basic medical and physical needs were almost eliminated while other needs
were reduced.
54
The protocol questionnaire asked questions on need for and provision of
the following types of services:
Surgery
Vocational placement
Hospitalization
Receipt of tools, equipment
Physical therapy
Psychological therapy
Occupational therapy
Home modifications
Dental therapy
Social services
Speech or hearing therapy
Therapetic recreation
Other medical treatment
Sex therapy or education
Visiting nurses
Family member counseling
Prosthetic devices
Family member training
Vocational counseling
Other
Vocational training
Educational cost
As with equipment needs, three ways to examine the number of unmet
service needs will be presented--mean numbers of unmet needs, range in the
number of needs, and number of clients who experienced decreases in the
number of unmet needs. The figures will show that unmet service needs were
reduced over the years, which indicates that the projects were successful
in meeting client needs, although there were a number of unmet needs even
after a client had been in the program for three years.
Table 7 presents the mean number of unmet service needs over the years.
Table 7
Means number of unmet service needs
at intake and in second or third year
1976 and 1977 intake groups (combined)
1976 intake group
Intake
4.81
Intake
3.98
2nd Year
2.12
3rd Year 2.13
The mean number of unmet service needs were cut in half over the years.
Correlated t tests verified that a significant number of unmet needs had
been met (for the '76 and '77 intake groups, t=11.4, df=267, signifi-
cant at .05 level; for the '76 intake group, t=5.08, df 128, significant
55
at .05 level). A separate analysis showed that no significant reduction in
mean number of unmet needs occurred between the second and third year for
the 1976 intake group (means were 2.31 for second and 2.13 for third years,
t=0.80, df-128, not significant at .05 level). As with equipment needs, then,
most need reduction occurred in the first year the client was in the program.
The projects were successful in reducing the number of unmet
service needs in the first client year for the '77 intake group to the
same level as the '76 intake group in year 2, even though the need of the
'77 grouping was greater at intake. The unmet needs of the '77 group was
reduced from 6.2 to 2.03, while the reduction for the '76 intake group
was from 4.26 to 2.31. It is probable, as with service needs, that the
reported need at intake was greater for the '77 intake group because of
projects' ability to identify needs earlier, due to gained experience in
problem identification.
As with equipment needs, there was a substantial number of unmet
service needs for some clients even after three years (mean number of
service needs was 2.13 in the third year). Part of the reason concerned
the appearance of non basic service needs in the third year. A discussion
of the types of service needs will show that almost all basic service needs
were met while other service needs either remained or appeared after the
first year.
Table 8 presents the number of clients with unmet service needs by
number of unmet service needs. As can be seen, the range in number of
unmet service needs is very large--from 0 to 18. The shift in the number
of unmet needs per client is great. Clients in general had fewer needs
after being in the program for any length of time. The data in this table
56
Table 8
Number of clients with unmet service needs by
number of unmet service needs, 1976 and 1977 intake groups
Number of unmet
1976 intake group
1977 intake group
service needs
intake 3rd Year
intake 2nd Year
0
22
38
9
44
1
12
23
6
16
2
12
11
8
10
3
12
16
10
17
4
7
8
12
10
5
5
8
6
7
6
6
4
7
6
7
5
3
4
2
8
3
1
16
-
9
4
2
5
-
10
1
-
4
2
11
3
-
1
-
12
3
-
2
-
13
-
-
2
-
14
5
-
4
-
15
2
-
4
I
16
-
-
2
-
17
-
1
-
-
18
-
-
1
-
57
also verify the analysis of the mean number of unmet needs presented above.
Needs were reduced substantially, and the projects appeared more successful
in reducing the needs of the '77 intake group than the '76 intake group,
presumably because of gained experience. A substantial number of unmet
needs existed even for the clients in the program for three years. The
uniqueness of table 8 shows that there was a wide diversity in the numbers
of unmet service needs by the clients. This finding taken with the fact
that the kinds of needs were varied, further indicates the large diversity
of the client group, and indicates that rehabilitation plans for them must
be highly individualized.
To analyze unmet service needs on a more individual level, table 9
was constructed to show how many clients experienced a reduction in the
number of unmet needs. Seventy percent experienced a reduction, while 13%
remained the same and 12% increased in number of unmet needs. The latter
two percentages may be a result of change in perceived need as the clients
progressed through their rehabilitation program. That is, as basic needs
were fulfilled, other needs emerged. It is not possible to determine this
with absolute certainty, but information on change over time in type of
severe needs seem to support this contention.
In general, then, it has been demonstrated that reduction in unmet
service needs followed the same general pattern as reduction in unmet
equipment needs, but that reductions were even greater for service needs.
58
Table 9
Number and percent of clients who experienced
change in the number of unmet service needs
1976 and 1977 intake groups
Need Change
Number
Percent
Reduction
189
70
No change
50*
18
Increase
32
12
*23 of these clients have no unmet needs
The number of unmet service needs was reduced which indicates improved client
status. As with equipment needs, questions remain on why certain clients
had more needs after being in the projects, what type of needs existed, and
how these needs changed over time. An analysis of the types of unmet
service needs and then changes over time will help to answer these questions.
The numbers of unmet needs by type of service are presented in table 10.
In absolute numbers, the greatest unmet service needs were for vocational
counseling, vocational training, vocational placement, psychological therapy
and therapeutic recreation, followed by physical therapy, occupational
therapy, home modifications, social services and family member counseling.
Other areas of great need included other medical treatment, visiting
nurses, sex therapy and family member training. Areas of least need in-
cluded surgery, hospitalization, dental therapy, speech or hearing therapy,
prostatic devices, educational costs, receipt of tools, equipment or license,
and other.
Over the years, substantial progress was made in reducing all needs.
In fact, the only needs that were not reduced by one-half were: speech or
hearing therapy, prosthetic device, vocational training, educational cost,
vocational placement, home modifications, social services, sex therapy or
education, therapeutic recreation and family member counseling.
59
Table 10
Number of unmet service needs by type of service
1976 and 1977 intake groups
1976 intake group
1977 intake group
Type of unmet service need
Intake
3rd year
Intake
2nd Year
Surgery
2
1
6
3
Hospitalization
1
-
8
1
Physical Therapy
26
11
49
9
Occupational Therapy
21
9
45
8
Dental Therapy
15
7
27
10
Speech or Hearing Therapy
7
4
11
2
Other Medical Treatment
20
-
23
1
Visiting Nurses
21
5
24
6
Prosthetic Device
10
8
17
12
Vocational Counseling
39
16
53
9
Vocational Training
31
19
47.
21
Educational Cost
19
15
20.
10
Vocational Placement
30
23.
36
20
Receipt of Tools, Equipment or License
12
3
10
5
Psychological Therapy
30
12
34
17
Home Modifications
23.
25
47
31
Social Services
23
14
39
9
Therapeutic Recreation
31
29
55
21
Sex Therapy or Education
23.
14
29
21
Family Member Counseling
22
13
32
12
Family Member Training
21
6
22.
1
Other
8
3
6
3
60
As with equipment needs, service needs were divided into basic and
non-basic to determine if it was the basic needs which tended to be met
first, with non-basic needs emerging later. The service needs are cate-
gorized as follows:
Basic and Non-basic Needs
Basic
Non-Basic
Surgery
Dental Therapy
Hospitalization
Speech or Hearing Therapy
Physical Therapy
Vocational Counseling
Occupational Therapy
Vocational Training
Other Medical Treatment
Educational Costs
Visiting Nurses
Vocational Placement
Receipt of Tools
Psychological Therapy*
Home Modifications
Social Services
Therapeutic Recreation
Sex Therapy
Family Member Counseling
Family Member-Training
*Included as non-basic because of extremely low incidence of
Mental/emotional disorders in the client group. Psychological
therapy, while important, tended to be a supportive service
for the population.
The results of the analysis were more complicated than those of equip-
ment needs. There tended to be more non-basic needs at intake in absolute
number. When one looks at number of needs not met after one year of
service provision, it was found that there were fewer non-met basic needs
than non basic needs (0.12 vs 1.1). This does not prove that basic needs
were more frequently met, because there were fewer basic needs at intake.
However, far more non-basic needs emerged over the years, than basic.
The mean number of non-basic needs which emerged were 0.66, and the mean
number of basic needs were 0.11 (t=7.91, df=270, sig.). There were 600%
more non-basic than basic emerged needs. Like equipment needs, then,
61
non-basic needs emerged at a greater rate than basic needs. Almost all
basic needs were met, while a substantial number of non-basic needs re-
mained after one year of service. The figures followed the same pattern
between years two and three for the '76 intake group.
The projects were successful in getting needed services to clients.
The means number of unmet service needs were significantly reduced over
the years, and most clients experienced a reduction in the number of
services needed. Some needs remained, even in the third year. An analysis
of types of unmet needs revealed, however, that this was due to the emergence
of non-basic needs, after the basic needs had been met. Types of needs
varied greatly from client to client, but greatest needs at intake were for
vocational counseling, vocational training, vocational placement, psycholog-
ical therapy and therapeutic recreation. Areas of least need reduction over
the years included the need for therapeutic recreation, home modifications,
vocational placement, educational cost, and prosthetic devices.
Household Management Needs
For many severely disabled persons, complete independence may not be
possible. Some will always be dependent upon others for assistance in house-
hold management activities such as financial management, shopping, preparing
meals, and so forth. However, by providing those services, the quality
of life for these clients will be improved. For example, provision of
these services may prevent the institutionalization of a person, or it
may allow a person the time to seek employment or attend school, or
permit one to move to a setting where employment or school opportunities
are better. An important piece of information for independent living
rehabilitation programs, then, is how many clients need assistance and what
type of assistance is needed.
62
Data were collected concerning the need for five types of household
management, which are listed and described below. This information was
collected only for those clients not in institutions, as those in institu-
tional settings presumably secure these services when needed.
Financial Management:
Clients' ability to manage his assets
sufficiently to meet monetary obligations.
This includes, but is not limited to, bud-
geting financial resources, balancing check-
books, etc. This area is a consideration
for disabled individuals who have been
dependent on another to perform this func-
tion, but are now ready to attempt living
in an independent housing arrangement.
Conducting Personal
Clients' ability to arrange his own daily
Business:
schedule or to secure his own housing,
transportation, etc. This is an activity
which many disabled people may not have
participation in. Many require assistance
in arranging services to meet the requirements
of living independently.
Preparing Meals and
This is one area in which many severely
Housekeeping:
disabled people are thought to require
assistance. As with any household, these
activities are necessary to sustain health
and provide an accommodating atmosphere in
which to live.
Attendant Care:
Assistance in such activities as getting in
and out of bed, dressing toileting, bathing,
etc. Attendant care is considered by dis-
abled people as one of the most needed
services, especially for those who have
limb impairments.
Shopping:
The clients' ability to enter places of
business and to select and purchase goods
necessary to maintain an acceptable life
style.
Information on these needs will be analyzed in two primary ways. First, the
numbers of needs and numbers of clients with needs will be examined. This
will provide for a gross picture of client status at intake and their
63
changes over the years. Secondly, the types of needs will be examined.
This will provide a picture of what independent living rehabilitation pro-
grams will be faced with in terms of types of household management needs
required to serve this population.
Table 11 presents the percent of clients with needs and unmet needs,
by the number of needs.
Table 11
Percent of clients with household management needs and unmet needs,
by number of needs. 1976, 1977 and 1978 intake groups.
Number
1976 Intake Group
1977 and 1978 Intake Groups
of Needs
Intake
2nd Year
Third Year
Intake
(Unmet
(Unmet
(Unmet
(Unmet
Needs
Needs)
Needs
Needs)
Needs
Needs)
Needs
Needs)
5
0%
( 0%)
0%
( 0%)
9%
( 0%)
4%
( 0%)
4
5%
( 0%)
11%
( 0%)
13%
( 0%)
17%
( 0%)
3
18%
( 0%)
13%
( 0%)
38%
( 0%)
24%
( 1%)
2
14%
( 3%)
16%
( 2%)
12%
( 2%)
17%
(12%)
1
20%
(25%)
21%
(13%)
9%
(15%)
13%
(24%)
0
42%
(72%)
39%
(85%)
19%
(84%)
25%
(63%)
As can be seen, 58% of the '76 intake group and 75% of the '77 and
'78 intake groups had household management needs at intake. Only 28% and
47% of those clients had unmet needs at intake. Most of those clients
with unmet needs had one or two unmet needs. Over the years, the '76
intake group experienced substantial reductions in unmet needs. Only 16%
had unmet needs in their third year. It is important to note that needs
increased for that group while unmet needs decreased, possibly reflecting
project experience in identification of needs as was the case for service
and equipment needs. This possibility is supported by looking at the data
of the '77 and '78 intake groups. Their percentages more closely resemble
64
the '76 clients in their third year than the '76 group at intake. Similar
phenomena occurred with equipment and source needs, which further supports
this possibility.
Another way to look at changes over the years is to look at the number
of clients who experienced increases or reduction in the number of needs
over the years. This information is contained in Table 12.
Table 12
Number and percentage of clients experiencing increase, decrease
or no change in number of unmet household management needs
1976 and 1977 intake groups
1976 and 1977 Intake Groups,
1976 Intake Group,
Intake vs. Second Year
Intake VS. Third Year
Fewer
Same
More
Fewer
Same
More
Number
74
178*
19
Number
31
80**
20
Percentage
27
66
7
Percentage
24
61
15
*162 of these clients
**79 of these clients
had no unmet needs.
had no unmet needs.
As can be seen from the data, most clients who experienced a change
in number of unmet needs had a decrease. Of those who experienced an
increase, it is possible that some of those additional unmet needs
occurred as a result of gained experience by the project in the identifi-
cation of needs (previously discussed), or because of the same possibility
addressed in the service and equipment needs sections. It is possible
that as more basic needs are met, new needs arise (See sections on service
and equipment needs).
The percentage of clients with each type of need/unmet need are
presented in Table 13.
65
Table 13
Percentages of clients with needs and unmet needs
1976, 1977 and 1978 intake groups
Client Group/Year
1977 and 1978
1976 Intake Group
Intake Groups
Intake
2nd Year
3rd Year
Intake
(Unmet
(Unmet
(Unmet
(Unmet
Type of Need
Need
Need)
Need
Need)
Need
Need)
Need Need)
Financial
Management
17%
(16%)
22%
(15%)
29%
(20%)
32%
(23%)
Personal
Business
0%
( 0%)
0%
( 0%)
13%
( 1%)
8% ( 1%)
Preparing meals/
Housekeeping
38%
( 0%)
37%
( 0%)
72%
( 0%)
57%
( 1%)
Attendant Care
30%
(25%)
42%
( 6%)
66%
( 7%)
54%
(32%)
Shopping
38%
( 7%)
37%
( 6%)
66%
( 6%)
56%
( 3%)
As can be seen, all services were needed by a substantial portion of
the clients at intake, except for assistance in conducting personal business
activity. The percent of clients who needed each service increased over the
years. Again, it is of interest to note that '77 and '78 intake group needs
were more similar to the '76 group in their third year than at intake
(presumably due to project experience in identification of needs).
The projects were successful in reducing unmet needs in all cate-
gories except for financial management which increased slightly, although
the proportion of unmet needs to needs was reduced. This information,
taken with information on number of unmet needs shows that substantial
progress can be made in meeting the unmet household management needs of
this population. Financial management is one area where unmet needs are
least likely to be met. The reason for this is not known, but it is
apparently an area which should be further explored by groups providing
independent living rehabilitation services.
66
Social interaction
Types of social activities engaged in, and how often a person
participates in them, are good indicators of integration into the mainstream
of society. As stated in the Comprehensive Service Needs Study,*
"A person's career and life style are frequently the basis for
judging his success or failure. An individual's development
of a sense of competency is reinforced and strengthened by
achievements in work, in quality of life, and in the level
and satisfaction of social interaction with others. This is. no
less true for the handicapped population, and the limitations
imposed by a severe disability can significantly hinder the
development of personality, self-concept, and competency."
The Comprehensive Service Needs Study demonstrated, via a survey of the
most severely disabled, that the severely handicapped are a generally
isolated population, and that their participation in social activities is
quite limited. Most activities are restricted to contact with family
members with whom they reside. One objective of an independent living
program, then, should be to increase the social participation of this
population.
The protocol questionnaire used in the demonstration project collected
yearly information on social interaction including types of activities
engaged in, and how often clients participate in them. All categories related
to the one month period before the questionnaire was administered. The
categories used were:
Friends/relatives visit client
School/Vocation Training
Client visits friends/relatives
Shopping
Attend religious services
Volunteer work
Group meetings for disabled
Wage/Workshop work
Other group meetings
Other
Public entertainment
Report of the Comprehensive Service Needs Study, The Urban Institute
Washington, D.C., June 23, 1975.
67
From this information, two measures of improved social interaction were
constructed: 1) change in percent of clients engaging in activities over time,
and 2) change in frequency of participation. This section will analyze social
interaction, using these measures by looking at types of activity engaged in,
by constructing scores based on a summary across categories. Improvement
over time can be used as an indicator of general improvement by the clients.
Figure 3 displays the percent of the '76 intake clients who engaged in
selected social activities at intake and in year three. As can be seen, there
were increases in all categories over the years, especially in the percent of
clients who visited friends. The increase in that area was great--from one
half to nearly three quarters of the clients. This is a particularly impor-
tant finding as that activity involves the use of many skills (transportation,
mobility, using equipment, etc.) and overcoming environmental barriers--it
is a good measure of client's integration of learned independent living skills.
The clients increased in participation in other areas too, albeit not to the
same extent. If scores are constructed based on the number of activities
engaged in over time, the means presented in Table 14 are derived.
Table 14
Mean number of social activities engaged in over a one month period
1976 and 1977 intake groups*
'76 and '77 intake groups
'76 intake group
intake
2.56
intake
2.34
2nd year 2.91
2nd year
3.18
3rd year 3.07
3rd year 3.07
(t=5.93,df=267,sig)
(t=4.56,df=129,sig)
(t=1.23,df=129,n.s.)
*Work and school activities were eliminated from analysis as they have
been reported upon by a separate analysis elsewhere in this report
68
10
20
30
40
50
60
70
80
90
100
,
Friend visits
Intake
84%
client
3rd Year
87%
Client visits
Intake
50%
friend
3rd Year
72%
Public
Intake
36%
entertainment
3rd Year
47%
Intake
33%
Shopping
3rd Year
58%
Attend
Intake
26%
church
3rd Year
29%
Attend meeting
Intake
14%
of disabled groups
3rd Year
28%
Attend other
Intake
7%
group meetings
3rd Year
3%
Volunteer
!ntake
5%
services
3rd Year
9%
10
20
30
40
50
60
70
80
90
100
Percent of Clients Who Engaged in Selected Activities in Past 30 Days
(1976 Intake group, at intake and 3rd year)
Figure 3
69
Mean increase in number of activities engaged in was significant (at the
.05 level) for all comparisons except from year 2 to year 3 for the '76 intake
group. These second and third year results could be due to a ceiling effect.
As clients engage in more types of activities, there are fewer left to engage
in. Considering that at least three categories of activities are probably
areas of low participation by the general population (volunteer services,
attend group meetings--of disabled, or other), there remains a possible
range in scores from 0 to 5. The ceiling effect, then, is a real possibility
for explaining the non-significant increase from year 2 to 3. The information
on frequency of engaging in activities show that significant increases did
occur from year 2 to 3. While numbers of types of activities engaged in
did not increase, frequency did, which helps to support the ceiling effect
contention.
Scores were constructed to measure the frequency of participation in the
activities listed. There was a range of possible scores from 0 to 4 (0, 1,
2, 3, and 4 or more times in the past month). These scores were added
across categories and weighted as a percent of those activites actually
engaged in (this was done as a "don't know" category was included as a pos-
sible answer). The possible range in scores then is 0 to 100. High scores
are not expected as many of the activities are types which are not engaged
in frequently by the general population (previously discussed). Since
similar information is not available on the general population, the impor-
tant factor is degree of increase in participation, not the actual score.
The mean scores on participation are presented in table 15.
70
Table 15
Mean scores on frequency of participation over a 30-day period
in social activities
1976 and 1977 intake groups
'76 and '77 intake groups
'76 intake group
intake
23.09
intake
22.60
2nd year
26.03
2nd year
28.10
3rd year
30.11
3rd year
30.47
(t=5.15,df=245,sig.)
(t=4.82,df=110, sig.)
(t=3.27,df=117,sig.)
The means show that clients participated more frequently in social acti-
vities, the longer they were in the program. Progress was made not only in
the clients first year, but also from year 2 to year 3. This finding tends to
support the ceiling effect contention on why the numbers of types of activities
engaged in did not increase from year 2 to 3. Clients had fewer types of
activities left to select from, and as a result, means did not change. Fre-
quency of participation in those activites did however, increase significantly.
As social intéraction is an important measure of integration into society,
it can be said that the projects were successful in making progress in
returning these clients into the mainstream of society. Both types of
activities engaged in, and frequency of participation increased over the
years.
Transportation
Transportation ability is of vital importance to people in general, and
perhaps more important to the handicapped in particular. The ability to get
needed medical services, rehabilitation, education, to get to work and to
engage in recreation depends largely upon transportation ability. Without
transportation, the severely handicapped are isolated and their potential for
improved functioning is severely reduced. This section will examine the
transportation needs and abilities of the clients in the demonstration
projects.
71
Four types of transportation indicators were obtainable from data
collected in the protocol questionnaire--number and percent of clients
having a transportation problem, type of problem, type of transportation used,
and problems in attending or wishing to attend school or work. These indica-
tors will serve as the format for presentation on the transportation abilities
of the clients.
The data on percent of clients who have a transportation problem is
presented in table 16.
Table 16
Percent of Clients who have a Transportation Problem
1976 and 1977 Intake Groups
1976 and 1977 Intake Groups
1976 Intake Group
Intake
Year 2
Year 2
Year 3
72%
68%
65%
52%
Seventy-two percent of all clients had a transportation problem at intake.
Little progress was made in the first year of service in reducing the per-
cent of clients with transportation problems. For those clients in the
program for three years, however, substantial progress was made in reducing
the percent of clients with problems (from 67% at intake to 52% in the third
year). Although substantial progress was made, the majority of clients still
had problems.
Although the percent of clients with transportation problems remained
high, progress was made in reducing the number of clients having specific
types of problems (see figure 4). Roughly three quarters of the '76 intake
clients reported having problems in each of the following areas: getting in
and out of auto; getting on/off public transportation; traveling near
Getting in and
Intake
45%
out of home
3rd Yr.
25%
Getting in and
Intake
77%
out of auto
3rd Yr.
<49%
Getting on/off bus,
Intake
84%
train, other mass transit 3rd Yr.
66%
Traveling near distances
Intake
74%
72
for routine purposes
3rd Yr.
/52%
Traveling far distances
Intake
77%
but within urban areas
3rd Yr.
>53%
Traveling to
Intake
68%
other cities
3rd Yr.
10
20
30
40
50
60
70
80
90
100
Percent of Clients Reporting Specified Type of Transportation Problem,
If Problem Exists, Intake vs Third Year
(1976 Client Group)
Figure 4
73
distances, traveling far distances, and; traveling to other cities. Almost
one half of those having problems had difficulty even getting in and out of
ones home.
By the third year significant reductions were experienced in the percent
of clients having those problems. Problems in getting in and out of one's
home were cut almost in half, and most other areas were reduced by one-third.
One may have difficulty in transportation but still be able to get
around, so these figures may not reflect significant improvement. It is possible
that a client would have improved ability to get in and out of autos, for
example, but that client would still have a problem.
To get another picture of change in ability, types of transportation
modes used by clients were compared over time. To construct a score which
would be statistically comparable, a client received a rating of 1 if he
used the specified type of transportation, and a zero if he did not. The
mean client scores by type of transportation are presented in table 17.
Significant increases were found in the areas of wheelchair use, use of
regular public transportation, use of adapted buses and minibuses for the
disabled, and in transportation arranged by the agency. Other areas did
did not significantly change (except for walking, which decreased from year
2 to year 3, the reason for this is not known). The general tendency over
all categories however, was for scores to increase. So, while every score
did not significantly increase, taken as a whole, improvement did seem to
occur, with those cited above (wheelchair, public transportation, adapted
buses, arranged by agency) changing the most.
Transportation problems related to going to or wishing to go to work
or school were reduced, although the problem was still great. Seventy-eight
Table 17
Mean Client Score on Transportation Used
1976 and 1977 Intake Group
1976 and 1977 Intake Groups
1976 Intake Group
Type of Transportation
Intake
2nd year
t
df
2nd year
3rd year
t
df
Walking
0.35
0.35
0
245
0.40
0.31
2.74* 117
Wheelchair
0.70
0.75
3.03*
245
0.71
0.75
1.27
117
Drive Self
0.06
0.08
1.67
245
0.08
0.11
1.35
117
Non-Auto motorized vehicle
0.06
0.08
1.00
245
0.09
0.06
1.39
117
74
Relative or friend drives
0.72
0.76
1.37
244
0.78
0.82
1.22
117
Regular public transportation
0.17
0.25
3.18*
245
0.26
0.25
0.53
117
Adapted buses, minibuses
0.09
0.16
2.78*
245
0.07
0.17
3.09* 117
Transportation arranged by
agency
0.45
0.61
5.26*
245
0.60
0.58
0.51
117
*significant at the .05 level
75.
percent reported transportation problems in wishing to or going to school
in the third year (this was down from 88% at intake). Of those with such
a problem in the third year however, most had assistance available to them
(79% of those with such a problem, up from 67% in year 1). For those
desiring to or actually working, 71% still had a transportation problem in
year 3 (down from 82% at intake). However, the percent of those having
assistance available to them was lower for those still having a transportation
problem (49%, as compared to 55% in the first year).
Taken together, the data lead to the conclusion that transportation
ability did improve significantly for the clients in the projects.
Substantial problems remain however, and it appears that transportation
problems remain one of the most serious for this population.
Architectural Barriers
There were three sections on the protocol questionnaire relating to
architectural barriers. The first asked if architectural barriers existed in
the home, and if so, what was made difficult due to the barriers, and what was
needed to eliminate the barriers. The second section asked what kinds of special
arrangements were, or would be necessary to work, if the client worked, or
would like to work. Internal accessibility and external accessibility were
2 out of the 12 items which could be checked. The other items were not related
to architectural barriers. The third section was the same as the second except
that it pertained to those clients attending, or wanting to attend school.
Tables 18 and 19 show that a higher number of clients had architectural
barriers in the home after they had been in the program for 1 or 2 years.
76
Table 18
Table 19
Had barrier in year 2
Had barrier in year 3
Total at
Total at
Yes
No
intake
Yes
No
intake
Had barrier
Yes
27
9.
36
Had barrier
Yes
9
6
15
at intake
No
15
187
202
at intake
No
10
82
92
Total in
Total in
year 2
42
196
year 3
19
88
Number of clients with architectural
Number of clients with architectural
barriers in the home, at intake, and
barriers in the home, at intake, and
after 1 year
after 2 years
(76 and 77 intake groups)
(76 intake group)
A series of correlated t tests show that the number of clients with barriers in
the home were not reduced significantly over the years. Scores for these tests
were computed for clients in such a manner that having barriers in the home
equals 1, and not having barriers equals 2. When mean scores from the '76
intake groups were compared between intake (1.64) and year 2 (1.69), the mean
scores were not significantly different (t=0.62,df=129). Likewise, means
between years 2 (1.71) and 3 (1.69) were compared and no significant difference
was found (t = 0.33, df = 129).
If will be noted that the number of clients who gained barriers over the
years was quite high. These results may be an artifact of the manner in which
the clients responded to the question. That is, it is possible that clients who
seemed to gain architectural barriers over the years, had barrier in all years,
but did not respond appropriately. Also, it is possible that as the client pro-
gressed through his rehabilitation program, the expectations he had of himself
changed to include activities never expected before. There may be problems in
meeting those expectations (including architectural barriers). In this case,
improved status is reflected in an increase in problems (or increased in
architectural barriers). Finally, there is the possibility that the number of
77
clients reporting barriers increased because of the number of client who were
deinstitutionalized. Presumably, few if any architectural barriers exist in
the institutional setting. When a client leaves such a setting, he finds
that architectural barriers do exist.
That the increase in numbers of persons reporting architectural barriers
may be an due to the manner in which the clients respond to the question,
may be reflected in that the data on problems caused by the barriers and
modifications needed to remove the barriers indicate that problems and
barriers were reduced over the years (figure 5 and 6).
The data of figure 4 show that the problems caused by barriers were
reduced; especially for those clients in the program for three years.
Figure 5 shows that the percent of clients in need of specific modifications
was reduced over the years. It appears then, that although the percent of
clients who report architectural barriers in the home remained high, the
problems caused by barriers and number of modifications needed to reduce the
barriers decreased, indicating improved client status.
A second measure relating to the problems of architectural barriers
concerns problems in going to or wishing to go to work and/or school. Acces-
sibility to buildings was second only to transportation in this area. Eighty-
three percent of all clients going to or wishing to attend school reported
that external accessibility was a problem, and 79% reported that internal
accessibility was a problem. For work, 70 and 66% reported external and
internal accessibility problems. Responses did not change over the years.
By year three, 84% reported external and internal accessibility problems for
schooling. Seventy-six and seventy-two percent reported external and internal
accessibility problems for work (up 4 and 3 percentage points from responses
when they entered the program.
R
Service
57%
LEGEND
Getting in and out
42%
of residence
41%
76 (1) +77 (1)
30%
76 (2) +77 (2)
76 (1)
58%
76 (3)
Moving from
57%
room to room
63%
39%
50%
Going from thresh-
48%
old to street
37%
34%
37%
Doing home making
33%
activities
39%
78
34%
75%
67%
Bathing
76%
57%
62%
55%
Toileting
59%
45%
33%
31%
Grooming
35%
28%
10
20
30
40
50
60
70
80
Problems Caused by Barriers in the Home, if Barriers Exist
(Intakes vs 2nd and 3rd Years)
Figure 5
79
60
54%
52%
50
Percent of Clients Reporting Specified Type of Modification
40
38%
30
28%
26%
24%
22%
20
13%
11%
10
8%
0
YEAR
1976
1978
1976
1978
1976 1978
1976
1978
1976
1978
TYPE OF
Ramps
Wider
Household
Elevators
Ground Floor*
MODIFICATION
Doorways
Appliances
Type of Modification Needed to Eliminate Architectural
Barriers in the Home if Barriers Exist
(1976 intake group, 1976 and 1978)
Figure 6
*Cannot modify, should move to ground floor.
80
It appears that problems can be substantially reduced in a client's
home, but as might be expected, eliminating barriers in the outside environ-
ment is more difficult. Recent laws require any agency or institution which
receives federal funding to make modifications so that their facilities are
accessible to the handicapped. Progress appears to be slow. The individual
projects have little to do with making schools and places of employment
accessible, so these results could have been anticipated. These results
point out the great need of this group for elimination of architectural
barriers in the community.
Living Status
This section explores the living status of the clients, as well as the
patterns of change over time.
Living status refers to type of housing and household living arrangements
(whom the client lived with). Information from these indicators can show
general client improvement as it demonstrates how many clients were
deinstitutionalized, how many clients lived in "age appropriate" types of
household, and how many improved or worsened in living status.
As indicated, living status was compared over time to see what improve-
ments had been made in that area. To make meaningful comparisons, the data were
analyzed in two ways. First, the numbers of clients in each type of housing
arrangement were compared over the years to provide for a gross indicator of
change. Secondly, a scale of living status was constructed so that changes
on a more encompassing level could be analyzed.
Table 20 presents the percent of clients by housing categories.
-68
81
Table 20
Percent of Clients by Housing Category
'76 and '77 Clients
'76 Intake Group
'77 Intake Group
Type of Housing
Intake
2nd Year
3rd year
Intake
2nd year
Owned home
34%
38%
. 41%
38%
35%
Rented home
13
9
7
9
10
Owned apartment,
condominium,
trailer
-
-
-
-
-
Rented apartment
condominium,
trailer
23
32
39
24
32
Rented room
2
2
2
2
2
Institution
21
20
12
26
21
As can be seen, steady gains were made in the percent of clients who
lived in an owned home (the '77 intake group decreased by 1 percent, possibly
due to error), and in a rented apartment, condominium, or trailer. Slightly
fewer people lived in rented homes while the percentage in rented rooms and
owner apartment, condominium and trailers remained stable. The percentage
of clients in institutions decreased steadily over the years.
From the data presented then, it can be said that significant progress
was made in deinstitutionalizing the client population and that there was
general improvement in housing status. The finding that many were
deinstitutionalized is important as this was one important concern of the
projects.
In an attempt to analyze the reasons for such a high percentage of
clients being deinstitutionalized, a number of comparisons were made between
those deinstitutionalized, and those who remained in institutions. Statistical
tests of significance were not performed due to the low sample sizes.
Instead, general trends were analyzed.
82
No comparisons were possible based on type of disability as almost all
clients, whether deinstitutionalized or not, were physically disabled.
Generally though, over one half of all clients in institutions had
impairments involving three or more limbs, and 14% had impairments of 1 or
both upper limbs. The visually impaired accounted for 14% of the population.
Age appeared to make little difference in whether or not a client was
deinstitutionalized. The mean age of all clients ever in institutions was
about the same as for the general client population (38). The only exception
to this finding was in the 1978 client group. The Seattle project launched
an effort to work with the elderly disabled in that year. As a result, about
three quarters of the Seattle institutionalized population was over 65.
Data were collected on whether or not a client in an institution had a
place to go if he or she were to be deinstitutionalized. As could be
expected, of those who had a place to go, more were eventually deinstitutionalized
(23 deinstitutionalized, 13 not). Of those who had no place to go, most
were not deinstitutionalized (17 deinstitutionalized, 39 not deinstitutionalized),
but a substantial number of them were deinstitutionalized. It is of interest
to note that the majority of clients in institutions reported that they had
no place to go if they were to be deinstitutionalized. Since availability
of such a place is important for deinstitutionalized, the lack of a place
to go could be a critical problem for some disabled people who are institutionalized
and for whom deinstitutionalization is feasible.
Of those clients who entered the program in 1976 and who were institutionalized,
Barthel and PULSES scores were compared over time according to whether and when
they were deinstitutionalized. In 1976 (year 1), scores were similar regardless
of whether they were or were not ever deinstitutionalized (Barthel average =
37.9, PULSES average = 16.7). Mean scores fell into the severely handicapped
83
group. In 1977 (year 2), 8 clients were deinstitutionalized and their PULSES
and Barthel scores improved (Barthel average = 67.6, PULSES average = 12.8).
No significant changes occurred for those still in institutions regardless
of whether or not they eventually were to leave the institution. In 1977,
those who had been previously deinstitutionalized improved further in their
scores (Barthel average = 68.7, PULSES average = 11.5). Those who were
deinstitutionalized in 1977 improved also (Barthel average = 42.2, PULSES
average 13.0), while those who were not deinstitutionalized experienced no
significant change in their scores.
It appears then that Barthel and PULSES scores are not good indicators of
deinstitutionalization potential, as scores while in the institution were
similar regardless of whether or not they were eventually deinstitutionalized.
Clients who were deinstitutionalized improved in functioning after they were
deinstitutionalized (changes were generally from a rating of severely disabled
to moderately disabled). It is not possible to determine whether the changes
were simply because of the changed environment or whether the client actually
improved in his functioning, although the latter seems to be the case as scores
were higher after the second year of deinstitutionalization than after the
first year of deinstitutionalization.
The only exception to these findings were for clients in the Berkeley
project. Barthel and PULSES scores for clients who eventually were
deinstitutionalized were better than scores for those never deinstitutionalized.
The reason for this anomaly is not known. Because it happened in only one
group, and because of the small sample size (8 institutionalized clients in
the Berkeley sample), it is unclear whether this represented a real change.
Clients were asked if they could live in the community if certain
services were available. There were few responses to the following items:
84
household financial management, assistance in personel business activity,
and counselor/follow-up services. This seems to indicate either that these
services were not needed, or that it was not known if they were needed.
Assistance in preparing meals, housekeeping and/or shopping and attendant care
were reported as needed by three quarters of the institutionalized population
if they were to be discharged.
In summary, it was found that about one-half of all clients who had been
in the program for two or three years were deinstitutionalized. Improved
Barthel and PULSES scores after deinstitutionalization suggest that there was
some improvement in their living status. Type of disability, age and PULSES
and Barthel scores while in the institution were found not be be good predictors
of deinstitutionalization potential. Having a residence readily available to
go to seemed important for deinstitutionalization, however many who reported
no such place were deinstitutionalized. It was also found that the majority
of the institutionalized had no such residence immediately available. If
these physically disabled clients are to be deinstitutionalized, it appears
that assistance in preparing meals, housekeeping and shopping, along with
attendant care are among the most needed services.
To conduct a comprehensive analysis of the living status changes of
noninstitutionalized clients, a scale was developed that combined living
status with age variables and whether or not a client was in school. The
scale is not intended to be a definite scale as some may aruge against some
of the scoring features. Rather, it is intended to be a general index from
which scores can be constructed, and comparison made. The scoring features
are listed below.
16
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85
Score
Definition
1
under 18 years old and living alone, or
(low)
over 18 years old, not in school, and living with
parents or other related persons
2
over 18 years old, in school, and living with
(medium)
parents or other related persons, or
under 18 years old, and living with unrelated persons
3
under 18 years old, and living with parents or other
(high)
related persons, or
over 18 years old, and living with unrelated persons,
or
over 18 years old, and living alone or with spouse
Using this scale, the numbers of clients who increased, decreased or
remained unchange in scoring over the years can be tabulated. Table 21
presents this information.
Table 21
Number of Clients who Increased, Decreased or Remained Unchanged
in Living Status Score
1976 and 1977 Intake Groups
'76 and '77 intake groups
'76 intake group
intake vs. year 2
year 2 vs year 3
A. unchanged, over 18 years old,
living with spouse or alone
60
44
B. Improved
33
10
C. Unchanged, but not in "A" above
148
66
D. Worsened, and, not 18 years
old and living alone or with
spouse
13
9
E. Worsened, and 18 years old and
living with spouse or along in
year 1
14
1
Mean, time 1 and time 2
2.01, 2.12
2.26, 2.25
t test results
t=2.04, df=155, sig.
t=0.33, df=80, N.S
86
As can be seen, significant improvement was made in living status between
intake and year 2, and no significant changes in mean score were experienced
between the second and third years. Generally, most improvement occurred between
intake and year two. As living status is an important indicator of independent
living, comparisons were made on four selected variable to determine if
improvements were made in other areas for those clients who remained unchanged
in living status, and were not over 18 living with spouse or along (no
comparisons were made on those regressed as the number of those clients was
small). As most activity ocurred between intake and year 2 in living status
(and in other problem areas addressed in this chapter) the '76 and '77 intake
groups were combined and compared between intake and year 2. Table 22
presents the results.
As the table shows, substantial improvements were experienced by these
clients in most areas. They were engaging in social activities more often,
they had received more services, and their unmet equipment needs were reduced.
Their transportation scores however, remained essentially unchanged.
Table 22
Means of Change Indicators between Intake and Year 2,
1977 and 1978 Intake Groups
Those who experienced no change in living status,
and who scored less than 8 on living status
Intake
2nd Year
t value
dt
Social Interaction Scores
21.6
25.1
2.89*
139
Services Received
3.8
5.9
5.15*
147
Unmet Needs
1.9
1.1
4.44*
147
Transportation Scores
19.3
18.7
0.53
*indicates significant at the .05 level
87
It appears that many clients experienced an improvement in living status.
Of those who did not change status, other important benefits were derived
from participating in the program.
This section has shown that substantial improvements were made in housing
and living status. Many clients were deinstitutionalized. Predictor
variables for deinstitutionalized were not found. Those who reported having
a place to go if they were to deinstitutionalized were more likely to leave
institutions, although a substantial number of those reporting having no
place to go were also deinstitutionalized. Barthel and PULSES scores were
not good indicators of deinstitutionalization potential, but significant
improvement in scores were experienced once the institution was left. If
clients are to be deinstitutionalized, the most needed services appear to
be assistance in preparing meals, housekeeping, and shopping, along with
attendant care. Among all clients, regardless of whether or not they were
ever in institutions, substantial progress was made in improving living
status as defined by the indicator developed. Even among those who did not
change in living status, other progress was made such as increased services,
decreased unmet equipment needs, and increased social interaction.
Physical Functioning
Two formal scales of independent living were used by the projects--the
Barthel index and the PULSES profile. The Bartel index is, perhaps, the
most commonly used measure of physical functioning. It is a well tested
instrument for establishing the degree of physical limitations, although
its use as a scale to measure change over time has not been rigorously
tested. Scores can range from -2 to 100 and measures the following physical
functions:
88
Drinking
Getting in or out of chair
Eating
Getting on or off toilet
Dressing upper body
Getting in or out of tub
Dressing lower body
or shower
Putting on brace or
Walking 50 yards on level ground
artificial limb
Walking up or down one flight
Grooming
of stairs
Washing or bathing
If not walking, propelling or
Bladder continence
pushing wheelchair
Bowel continence
The PULSES profile, like the Barthel index, has been widely used to
establish the level of disability. While it includes a separate measure of
sensory capacity (the Barthel index does not), it cannot effectively capture
improvements in a sensory handicapped individual's ability to cope with his
disability. It should be noted that an improved PULSES score occurs when
the PULSES index is lower. Thus changes in PULSES which show improved client
functioning will be recorded as a negative number. The categories measured
by the PULSES profile are as follows:
Physical condition
Sensory functioning
Self care dependent
Excretory functions
on upper limb function
Intellectual and emotional
Self care dependent
adaptability
on lower limb function
An analysis of changes in scores on both scales over time is presented
in Table 23.
Table 23
Average Changes in Measures of Functional Capability
1st to 2nd year
2nd to 3rd year
1976 and 1977 groups
1976 group
Barthel
PULSES
Barthel
PULSES
Berkeley
-5.01
- .14
- 1.00
-1.40
New York
-5.60
.99
- 6.10
- .43
Salt Lake City
8.29
- .74
- 1.94
-1.35
San Antonio
-2.41
.37
-14.12
1.58
Seattle
6.70
-1.37
.41
.17
All Programs
.84
- .32
- 3.44
- .58
89
It was argued in the second year's report on the demonstrations that the
data of San Antonio and New York projects should not be included in the analysis
of Barthel and PULSES. The San Antonio project contains only blind/multiply
handicapped persons. Neither scale adequately measures sensory limitations,
so the scales could not be expected to accurately measure change for those
persons. The clients in the New York program have muscular dystrophy as
their primary disabling condition. Since muscular dystrophy is a progressive
disease, deterioriation in physical functioning would be expected.
If one examines the remaining projects, it can be seen that the Seattle
and Salt Lake City clients increased markedly in both their Barthel and
PULSES scores in the first year. Between years two and three Barthel im-
proved slightly for the Seattle group and worsened slightly for the Salt
Lake group, while PULSES scores did the exact opposite. These changes in
the third year were very slight and could well be due to measurement error.
If one recalls changes in most areas addressed in this report, it was found
that most changes occurred in the first year of the project. Barthel and
PULSES scores seem to follow the same pattern for this group. Most improve-
ments in physical functioning seemed to occur in the clients' first year
of services.
The data on the Berkeley clients were puzzling. The Barthel scores
indicate worsening conditions while the PULSES scores indicate slightly
improved functioning. If the '76 intake group scores are compared, scores
improved in the first year. The '77 intake group scores, on the other hand,
worsened. The reasons for this are unknown. Considering that there were
only 15 clients in the '77 group with ratings on both years, the reason may
have to do with the small sample size.
90
Barthel and PULSES data on New York and San Antonio clients reveal
that both groups worsened in physical functioning over the years. This
was expected with the New York group as their clients consist of persons
with progressive disease (muscular dystrophy). The San Antonio group
also worsened. As their client group is ill adapted for measurement
by this scale, interpretation of the findings is difficult. Even
though both groups scored worse in these scales over the years, the data
in the body of the report indicate that almost all persons, regardless
of what project they were in, improved in other areas (social interaction,
unmet needs, etc). There appeared to be other benefits for many clients
aside from or regardless of physical functioning skills. It should also be
noted that the rate of deterioration may well have been slowed by the
service provided to the New York and San Antonio clients. Without relevant
control groups, however, this hypothesis could not be tested.
V. COST OF SERVICES
The Urban Institute staff analyzed the costs of services as well as the
source of funding for each client in the Section 130 demonstration projects.
Ten broad categories of services to individuals were examined: counseling;
diagnostic and evaluation; physical and mental restoration; training;
placement; maintenance; services to family members; transportation; aid and
attendant services; and other. These service categories are essentially
those required under program regulation guides for the regular VR reporting
1
system. Several cost categories have been added or expanded in an attempt
to capture the unique characteristics and emphasis of the Section 130
demonstration projects.
Obtaining service cost information in a format compatible with the
reporting format of the regular VR program was an attempt to facilitate
comparisons between the VR program and the Section 130 demonstration pro-
jects in terms of the types of services and costs needed to effectively
service the severely disabled. It should also provide valuable information
to assist in identifying the types of services and the program design needed
to effectively serve the severly disabled.
In addition to requesting services provided which utilize project funds,
we have also gathered information on services funded through other programs,
including the regular VR program. These other funding resources or "similar
benefits" are a key part of an effective rehabilitation program.
1. See Program Regulation Guide (RSA-PRG-76-38, August 18, 1976) for
a detailed description of reporting requirements.
92
as the basis for analytical study. The effectiveness of particular types
of services in meeting the needs of clients will be addressed.
Appearing below are definitions of each of the cost categories for
which we expenditures:
Counseling
Personal/Adjustment Counseling: Includes salaries and related expenses
of all personnel providing counseling services or supervising their provi-
sion or providing consultation in their provision. Included in this cate-
gory are counselors, interviewers, case aides, consultants, district and
local office supervisors, psychologists, social workers, and other profes-
sional personnel engaged in such activities as the processing of referrals,
determination of eligibility including acceptance for extended evaluation
to determine eligibility, development of an individualized written rehabili-
tation plan, and assessment of particular needs and problems confronting
individual clients.
Vocational Counseling: Includes all counseling expenses directly related
to determination of vocational goals and assessment of vocational potential
of clients.
Counseling for Family Members: Includes costs of providing counseling ser-
vices to family members in understanding the nature and constraints of the
disability affecting a family member, effectively utilizing family resources,
understanding the role they should take in assisting rehabilitation, as well
as the roles of the client, counselors and other participants in the VR
program, etc.
Other Counseling: Include any counseling activities not included in any of
the above categories.
93
These sources and the program they represent are as follows:
SSI
BEOG
SSDI
Private Foundations or Associations
(specify, e.g., M.D.A., Easter
AFDC
Seals, etc.)
General Assistance
Other VR Funds (I & E, Extended
(State Programs)
Evaluation, Regular Program)
VA
Family
Medicaid
Self
Medicare
Other
Title XX
Don't Know
Workmen's Compensation
Reporting of data on the cost or value of similar benefits has to date
not been consistently reported within the State-Federal VR system. To really
determine what is needed to successfully rehabilitate a client, valid infor-
mation on the types of services funded through other agencies or programs
is essential. The additional VR funding needed to design a program of inde-
pendent living for the severely disabled is often overstated given the poten-
tial for effectively utilizing similar benefits. Categorizing costs by source
of funding should aid in identifying the extent to which more appropriate
use of existing federal, state and private programs can minimize the budget
impact of an independent living program.
Cost forms are completed quarterly for each client. Actual costs or
expenditures for each service are provided except when actual figures are
unavailable; only then is an estimate of the approximate cost used. This
data, together with the other information on client characteristics, serves
94
Diagnostic and Evaluation
Medical Diagnosis: Includes medical and surgical examination, psychiatric
evaluation, dental examinations, consultations by specialists in all medical
specialty fields, inpatient hospitalization for study or exploration, clinical
laboratory tests, diagnostic X-ray procedures, trial treatment for differen-
tial diagnosis, stabilization on drug therapy, or determination of treatability
in the case of emotional disturbance, and other medically recognized diagnos-
tic services.
Psychological Evaluation: Includes psychological tests and measurements
including psychological profiles, assessments of social functioning, role
definition and other psychologically recognized diagnostic services.
Intelligence Testing: Includes various forms of intelligence and achieve-
ment tests.
Physical Functioning Tests: Includes tests of ability to perform basic
physical functions, including personal care, local travel capability and
ability to utilize various forms of physical functioning equipment and aids.
Work Evaluation/Work Adjustment: Includes evaluation of work potential
including an assessment of the extent to which medical, psychological,
intelligence and physical functioning factors would affect potential work
adjustment. Work samples, work progress and achievement and aptitude tests
would also be included.
Other: Includes all other diagnostic and evaluation services unique to the
project or not included under any of the above categories.
Physical and Mental Restoration
Surgery and Treatment: Incl udes medical, surgical, and psychiatric treat-
ment as well as payments (a) to physicians (general practitioners or special-
ists, including surgeons and psychiatrists) for home, office or hospital
95
visits in connection with treatment of clients and (b) to clinics or hos-
pitals for physicians' services when they are not included in bills for
hospitalization. The cost of assistant surgeons and anesthetists not in-
cluded in costs of hospitalization, should be charged to this category;
also the cost of drugs, biologicals and supplies incident to treatment.
The cost for surgery may include pre-operative and post-operative care.
This classification also includes costs to dentists or dental clinics for
dental services (exclusive of dental examinations) such as fillings, extrac-
tions, bridges, orthodontia, oral surgery, prophylaxis and treatment of
the gum or related tissues. The costs of optometrists and visual services
are also charged to this account.
Physical Therapy/Occupational Therapy: Includes costs of physical therapy
and occupational therapy performed under medical direction as well as the
costs of speech or hearing therapy, which is medically directed (i.e. pro-
vided in a facility under medical direction and under medical supervision).
All other forms of disability management such as travel training for the
blind should be included.
Prosthetic and Orthotic Devices: Includes the cost of artificial limbs,
braces, hearing aids, glasses and artificial eyes, contact lenses, surgical
applicances such as belts, trusses, corsets, elastic stockings, arch supports,
orthopedic shoes, suspensories, crutches, and hand and power operated wheel
chairs and dentures. Costs of repairs to prosthetic appliances should also
be charged to this account.
Hospital and Convalescent Care: Includes payments to hospitals for the cost
of inpatient or outpatient hospital services in connection with medical or
surgical treatment and with payment to convalescent or nursing homes for
clients including room, board, nursing home care and other services provided
96
by the facility under agreement with the VR program. This category should
also indicate payments to hospitals or related facilities for special nursing
services rendered to the client during his hospital stay and not included
in the hospital bill.
Medicine and Drugs: Includes costs of all medically prescribed drugs and
medicines except for costs incurred incidental to confinement in hospitals.
Other Restoration: Includes all restoration services that cannot be properly
classified under any other subcategory.
Training
Personal Adjustment: Includes all forms of training designed to facilitate
personal adjustment to a disability. Examples are literacy training, mobility
training, lip reading, braille, training in the use of artificial limbs
or appliances, personal grooming, and training in social sensitivity and
any other training designed to enable the client to personally adjust to
social situations which may hinder rehabilitation potential.
Vocational Training: Includes all forms of training, specially designed
to facilitate client's adjustment to an employment situation such as work
conditioning, developing work tolerance, or assistance in filling out job
applications.
College or University: Includes costs of tuition, fees, books and training
materials for courses of instruction leading to an academic associate, bac-
calaureate or higher degree whether the education program is full time or
part-time.
Business School or College: Includes costs of tuition, fees, books and
training materials needed for courses of instruction which leads to a cer-
tificate and usually provides specific job-related instruction but does
97
not include broad-based academic courses. Skills to be obtained may include
office practices, typing, accounting, bookkeeping, etc. Business training
which leads to an academic associate or baccalaureate degree should be in-
cluded under college or university training.
Elementary or High School: Includes any fees, books or special training
materials needed to assist client in completing elementary or high school
courses.
Vocational School: Includes courses of vocational or trades training defined
as training which may lead to a license or certificate and provides specific
job skills but does not include broad-based academic courses. Skills to
be obtained may include welding, woodworking, metal working, TV repair,
electrical wiring, product inspection, etc.
On-the-Job-Training: Includes any costs in connection with on-the-job train-
ing for a client. Under these programs the client usually works for wages
while learning the skills of a particular job.
Other Training: Includes any training costs which cannot be appropriately
classified under any of the training categories above.
Placement: Includes all costs associated with the placement of the client
in a gainful occupation and necessary follow-up either before or after case
closure.
Maintenance
Basic: Includes maintenance necessary for day to day living typically pro-
vided by public assistance or support payments. Maintenance payments out
of VR funds should be minimal in this category.
Supplemental: Includes supplemental cash transfers to clients necessary
to derive the full benefit of other VR services. It would include expenses
incurred for job interviews or employment at home or away from home up to
98
receipt of initial paycheck. Additional basic support to assist a client
in travel status while obtaining services for a short term training program
are further examples of other factors which require maintenance funds beyond
those normally anticipated in public welfare programs.
Services to Family Members: All services to family members other than coun-
seling for family members should be included in this cost category. Examples
of services include: joint training of a spouse or other family member in
operating a small business enterprise; transportation costs to enable a
family member to accompany the handicapped individual to various community
resources, e.g. medical clinic, social agency, etc.; relocation cost to
enable the family to accompany the handicapped individual to a new place
of rehabilitation or employment; child care service, family planning services,
housing services and protective care services.
Transportation: Includes reimbursement of client or direct payment for
client transportation to VR centers, hospitals, social service agencies,
and social or recreational centers. Costs of modifying VR transportation
equipment or client automobiles and costs of transportation attendants or
chauffers should also be included in this category.
Aid and Attendant Services: Includes costs of full or part time attendant
services needed for the client to remain at home or to accompany client in
activities outside home. Day care until the client reaches ability to func-
tion independently in home situation, meal services or occasional use of
attendant for bathing or housekeeping functions should be included.
Other
Home and Environmental Modifications: Includes home and environmental modi-
fications necessary to assist independent living within the home. Installa-
tion of grab bars and ramps; widening of doors; modifications of kitchens
99
or bathrooms are examples of items to be included in this category.
Coordination of Services: Includes costs incurred by project to arrange
for services from other agencies. Counselor time, phone calls and the costs
of accompanying clients through the administrative rigors of other programs
should be included.
Other Equipment: Teletype terminals for the deaf, recording requipment,
two way television systems and other specialized equipment would fall into
this category.
Other: This category would include any other services to clients that can-
not be classified in any other category. Examples include: reader services
for the blind; interpreter services for the deaf; tools, equipment, initial
stocks and supplies; and business or occupational licenses.
Cost Analysis
Of the two types of cost reported, project and other funds, the
former is the best avàilable estimate of what a program of independent
living rehabilitation would cost. Total cost (project and other) includes
costs funded through already existing sources, so many of those costs
would not be incurred by a new independent living rehabilitation program.
Using total cost to estimate total resources from all funding programs
would likewise not be accurate, as some major services were received by
clients prior to entry into the program. For example, SSI and SSDI bene-
fits were received by many clients before they joined the project. Those
who gained SSI/SSDI payments after entry into the project were entitled to
those payments regardless of entry into the project, so this expense
should not be seen as an increased load for SSI/SSDI. Rather, enrollment
of these clients on SSI/SSDI roles should be viewed as increasing the
100
effectiveness of the program (i.e., getting benefits to those who are
entitled, and should receive them).
A similar argument could be made for medicaid/medicare expenditures.
That is, most expenses would have been incurred regardless of whether or
not the clients were in the program. Increased costs in medicare/medicaid
reflect simply the providing of services to those who need medical services
and are already entitled to them.
Other programs, such as Social Services and Title XX, would experience
an increase in numbers of people served, and would use up some of their
resources. As it is impossible to specify exactly which costs would be
additional costs to other programs and which costs would have been incurred
anyway, it would be best to state only that some additional costs would be
experienced by other programs, but the exact amount is not known.
To estimate the direct cost of setting up an independent living reha-
bilitation program, cost/client was compared between the projects and the
vocational rehabilitation program. The best comparisons for present pur-
poses would be between average project cost per client, and average per
client cost in vocational rehabilitation funded through section 110 money
and funded through the Social Security Trust Funds. Comparisons with the
Trust Fund should be particularly interesting as Trust Fund clients are
typically more severely disabled than section 110 clients, and thus would
be more similar to project clients. Table 24 presents this information.
If one examines patterns of expenditures, one can see a difference
in how funds were utilized. As previously noted, a lessor percentage of
funds was spent on counseling and placement for project clients, and
average cost in this category was lower. Much more money was spend in
101
Table 24
Average Client Cost Per Year, Project and VR Programs
Demonstration Project
VR Program (1977)
Project
Trust
Service
Total
Funds only
Sect. 110
Funds
Counseling and Placement
Average/Client
$ 296
$238
$320
$363
% of funds
3%
17%
41%
38%
Diagnostic and Evaluation
Average/Client
528
118
81
88
% of funds
6%
8%
11%
9%
Physical/Mental Restoration
Average/Client
3,957
313
105
165
% of funds
43%
22%
14%
17%
Training
Average/Client
379
166
176
176
% of funds
4%
12%
23%
18%
Maintainence
Average/Client
2,192
37
51
50
% of funds
24%
3%
7%
5%
Services to Family Members
Average/Client
56
34
1
1
% of funds
1%
2%
0
0
Other
Average/Client
1,688
518
38
121
% of funds
19%
36%
4%
12%
(transportation)
268
(aid/attendant service)
607
(other)*
813
-
-
-
Total Cost/Client
$9,097
1,427
771
963
*Includes: Home and environmental modifications, coordination of services,
other equipment and miscellaneous.
102
the diagnostic and evaluation, and restoration services categories. It is
also of interest to note that the trust funds spent more on these categories
than Section 110 funds. Again, the pattern of the more severely disabled
incurring a higher average costs can be seen.
The largest difference, however, was for expenditures in the "other"
category. Section 110 spent the least amount in this category both in
actual dollars per client and in percentage of case funds. Trust fund
costs were substantially higher than section 110 funds, while project costs
were the highest. These costs seem to indicate that many non-traditional
services will be required to meet the néeds of the most severely disabled.
The cost questionnaire separated out transportation costs and aid/
attendant services costs from "other" costs as it was thought that these
would be major cost categories. Transportation costs were indeed high--
about one-sixth of all "other" expenditures. Project costs for aid/atten-
dant services on the other hand, were quite high. It appears that the
projects were successful in funding other funding sources to meet this high
cost.
Another notable difference in costs was found in costs for services to
family members. As the clients in the projects were highly dependent upon
others for many functions, this funding is not surprising. Higher costs in
this category should be expected when new independent living rehabilitation
programs are established.
103
Comparing Project Costs with VR Program Costs
Even though the cost data developed for the projects has some gaps and
a limited time frame, several major findings concerning potential costs of
a larger scale independent living program are apparent. First, the average
cost per client in an independent living program can be expected to be sub-
stantially higher than for clients in the traditional VR program.
Table 24 compares demonstration project costs with average levels of
program costs in the VR program. Comparisons are available for both Section
110 clients which represent a general caseload and for Social Security Trust
Fund clients which cover a more expensive severely disabled caseload. Clearly,
the average project cost in the demonstrating projects exceeds VR program
costs. Looking at program costs alone the average cost per client in the
demonstration projects is nearly double the cost of Section 110 clients and
more than 50 percent higher than the severely disabled trust fund clients.
While only program costs for the VR coaseload are available, we were able
to obtain total costs per client including use of all major similar benefits
for the demonstration project clients. The total cost of all services flow-
ing to the average client was $9,097. $7,670 or more than two-thirds of
these costs were similar benefits. The heavy use of similar benefits suggests
that any new independent living project should carefully examine the
approaches used in the demonstration projects to secure all available similar
benefits and keep project costs down. In essence the costs associated with
use of similar benefits should not be viewed as potential costs of an indepen-
dent living program. In many cases the client was already entitled to and
104
perhaps already receiving such benefits from SSDI, Medicaid, etc.
Another striking difference between the demonstration project costs
and the regular VR program is in allocation of costs among services. Counsel-
ing and placement services, for example, represent about 40% of program
services costs in the VR program. In the demonstration projects, the average
cost for counseling services were lower and represented only about 17 per-
cent of total program costs. Training is another service area that is much
more prominent in the VR program. Demonstration project funds were much
more heavily concentrated in physical/mental restoration and other ancillary
services which include transportation and attendant services. Clearly an
expansion of independent living programs will have a differing impact on
the structure of case services and the types of manpower and material needed
to serve the clients.
While the cost differences noted above are of significant magnitude
to support these findings, some caution should be used in attempting to
make precise cost estimates of an independent living program. It should be
noted that the costs represent only the first two years experience in the
demonstration projects and may reflect some initial start-up costs. It is
also possible that a larger scale independent living program may generate
some economies of scale which can lower the cost per client. Even if
adjustments are made for such factors, the available evidence still suggests,
substantially higher costs per client in an independent living program and
a different allocation of costs among service.
105
Again, it appears that costs for an independent living rehabili-
tation program will be higher than costs for the regular vocational reha-
bilitation program. Project cost per client in the projects were almost
double client cost funded through the regular vocational rehabilitation
program, and almost one third greater than the cost of clients paid for by
the Trust Fund.
It may be useful to examine total expenditures to get an idea of
service patterns. The average total expenditure per client was $9,097 per
year. Average project funds per client were $1,427 per year. If one
compares average total cost by project, it can be seen that San Antonio
had the largest mean expenditure, followed by Seattle, Salt Lake City, and
Berkeley. New York had the lowest mean expenditure per client. In exploring
the reason for the differences in cost, two categories of cost account for a
good deal of the differences--Physical and Mental Restoration, and Mainte-
nance. For example, San Antonio had clients who required hemodialysis. In
the 1977 intake group alone, 4 clients required such treatments, averaging
over $40,000 per client for one year. This increased the percent of funds
for restoration spent on the 1977 intake group. On the other hand, New
York reported no maintenance costs for any year. As maintenance costs were
averaging over $2,000 per client in other projects, this substantially re-
duced the reported total expenditures of New York.
If expenditures for maintenance and physical and mental restoration
are subtracted from total expenditures, average costs for clients are more
similar (See table 25).
106
Table 25
Average Cost Per Client by Project
Excluding Maintenance and Restoration Costs.
Project
Average Client Cost/Year
San Antonio
$ 3,189
Seattle
3,039
Salt Lake
2,714
New York
2,538
Berkeley
1,955
The low Berkeley figure may be misleading, as it is based on only one
client group (first-year costs for the 1976 intake group) while the others
are based on three client groups (first and second-year for the 1976 intake
group, and first year costs for the 1977 intake group).
If one reviews the data on client total cost per project, it can be
seen that the vocational rehabilitation projects were the highest (Salt
Lake City and San Antonio). This cannot be interpreted as indicating that
vocational rehabilitation agencies would be the most inefficient option for
providing independent living rehabilitation services since the characteris-
tics of the clients by project varied and costs have not been compared to
outcomes. More detailed cost comparisons will be included in the final
report.
Looking at patterns of expenditures over all projects would be justi-
fied as pooling across projects expands the data base which should average
out any "odd" figures. A brief examination of type of expenditures will be
presented here.
The major cost for all projects was for physical and mental restoration.
This cost category alone accounted for 43 percent of all expenditures.
Typically, the cost for these services were paid for out of Medicare or
Medicaid funds. The project paid only 5 percent of all such costs. Only in
107
New York did the projects pay for most physical/mental restoration services
(project funds accounted for 75 percent of these expenditures).
Maintenance was often the second largest cost of serving the clients.
These costs accounted for 24 percent of all expenditures. The most frequent
funding sources were SSI and SSDI. The projects paid only 2 percent of all
such costs.
Physical/mental restoration and maintenance are two categories of
services which would most likely be provided to these persons regardless
of whether or not they were in the projects. Most cost in the physical/mental
restoration area was for hospital/convalescent care (60%), which includes the
cost of institutionalization. Other costs were for medicine and drugs (8%),
surgery and treatment (15%) occupational and physical therapy (11%) prosthe-
tic devices (6%) and other (0.3%). As most of these costs would occur
regardless of whether or not the clients were in the project, they should
not be seen as an additional cost for setting up an independent living
rehabilitation program. In fact, these costs were probably reduced because
many clients were deinstitutionalized.
The other major cost category was maintenance. This consisted
primarily of SSI and SSDI payments. These clients were entitled to such
benefits regardless of whether or not they were in the program, so these too
should not be taken as an additional expenditure for an ILR program. Mainte-
nance and restoration accounted for 67% of all expenditures. The remaining
34% then would include costs most likely to be additional expenditures for
serving those persons in an independent living rehabilitation program. The
remaining costs average $2,802 per client per year. Most of the remaining
costs were paid for through other programs, and some of those costs would
108
have been expended for the clients regardless of whether or not they were in
the program. It is difficult to judge which are additional costs so no such
estimate will be given.
To get an estimate of additional costs for setting up an independent
living rehabilitation program, project expenditures were analyzed. It was
found that 32 percent of these funds were spent in the "other" category.
Coverage cost of $371/client per year). This category includes home and
environmental modifications, coordination of services, other equipment and
miscellaneous. Most of these expenditures fell into the other equipment
category (almost one-half of the expenditures) while the other subcategories
shared an almost equal proportion of the remaining costs.
Counseling was another major cost category for project funds. (Coverage
of $214/client per year). One fifth of all project funds were expanded for
this category, and most of that went toward adjustment counseling.
As much of this cost goes toward the processing of referrals, determina-
tion of eligibility, development of a rehabilitation plan and assessing
client needs and problems, this could be called a fixed cost and while
varying somewhat from client to client, should remain one of the more stable
costs, especially in first year expenditures.
Physical and Mental Restoration services accounted for 14 percent of all
project costs (average of $161/client per year). This is substantially
lower than the 43% figure of total project costs. It shows that most expen-
ditures in this category can be paid for by other funding sources (mostly
Medicaid and Medicare), but a substantial amount will be needed for paying
other restoration costs. The most frequently cited service paid for by
project funds in this category was occupational and physical therapy, which
accounted for roughly two-thirds of all restoration costs paid for by project
funds.
109
Training costs accounted for 12 percent of all project funds expended
(average of $139/client per year). About three-quarters of the cost in this
category went toward personal adjustment training. As the clients in the
projects are very severely disabled, the high percentage of funds expended
for personal adjustment training is not surprising. Such a high degree of
disability would require a great deal of such counseling to help the client
adjust to his handicap.
Nine percent of project funds went toward diagnostic and evaluation
costs (average of $104/client per year). For total costs, most funds were
expended for medical diagnosis and most were paid for by Medicaid and Medi-
care. Most project funds went toward psychological evaluation (58% of
project funds in the diagnostic and evaluation category).
Transportation costs accounted for about 6 percent of all project expen-
ditures (average of $73/client per year). Project funds paid for 30 per
cent of all transportation expenses. As was pointed out in the previous
chapter, transportation was one of the least resolved problem areas for
these clients, largely because projects have little to do with making trans-
portation systems accessible. The relatively large expenditure in this
area probably went toward arranging special transportation and it appears
that this will be a substantial cost in providing rehabilitation services
to this population.
Maintenance accounted for three percent of project funds (average of
$34/client per year). As most maintenance costs were paid for by SSI and
SSDI, maintenance was not expected to be a major cost. Limited additional
expenditures in this category can be expected for independent living rehabi-
litation programs.
110
Three percent of costs went toward services to family members (average
of $31/client per year). This accounted for roughly two-thirds of all costs
in this category. As few other funding sources are available to rely on,
independent living rehabilitation programs will be expected to pick up most
costs in this area.
Only two percent of project funds went toward aid and attendant services
(average of $26/client per year). As seven percent of the total cost fell into
this category, it appears that projects were successful in finding other
funding sources to cover this cost. General Assistance and Title XX were
the two most frequently reported funding sources.
Placement activites accounted for only 0.3 percent of all project funds,
and very little of total costs fell into the category (0.2% or $6,260 of the
total expenditures). The data collected reflect mostly cost in first year of
service. A low expenditure in this category therefore was not expected, as
the clients had very low employment potential at intake. Later year expendi-
tures will probably rise in the area as clients become more prepared to seek
employment.
As more data becomes available, it will be interesting to note changes
in these patterns of expenditures. Maintenance costs may decline as more
clients are deinstitutionalized. Training and placement costs may rise as
vocational potential increases. It will also be interesting to compare these
costs by service delivery approach (i.e., by project) and by client gains in
status. Such analyses will be possible as more data become available and
the final report will address these analyses.
Tables 26 thru 30 present cost data on each project.
Table 26
Project: Seattle
Total and Average Cost Per Client by Cost Category
Project Funds and Total Funds, 1976 and 1977
Project Funds
Total Funds
Total
Per Client/Year
Total
Per Client/Year
Counseling
$25,060
$282
$ 33,759
$ 379
Diagnostic and Evaluation
234
3
27,767
312
Physical/Mental Restoration
657
7
464,310
5,217
Training
324
4
13,770
155
Placement
59
1
1,275
14
Maintenance
516
6
240,115
2,698
111
Services to Family Members
86
1
170
2
Transporation
1,701
19
15,179
171
Aid/Attendent Service
46
1
89,200
1,002
Other
38,942
438
89,345
1,004
Total
$67,625
$760
$974,890
$10,953
Table 27
Project: Salt Lake City
Total and Average Cost Per Client by Cost Category
Project Funds and Total Funds, 1976 and 1977
Project Funds
Total Funds
Total
Per Client/Year
Total
Per Client/Year
Counseling
$ 33,698
$ 379
$ 34,488
$ 388
Diagnostic and Evaluation
8,850
99
11,100
125
Physical/Mental Restoration
21,380
240
316,694
3,558
Training
14,421
162
32,124
361
Placement
1,077
12
2,633
30
Maintenance
6,496
73
239,459
2,691
112
Services to Family Members
1,871
21
3,800
43
Transporation
19,245
216
40,697
457
Aid/Attendent Service
8,926
100
23,096
250
Other
72,082
810
90,916
1,022
Total
$188,046
$2,113
$795,007
$8,933
Table 28
Project: Berkeley*
Total and Average Cost Per Client by Cost Category
Project Funds and Total Funds, 1976 and 1977
Project Funds
Total Funds
Total
Per Client/Year
Total
Per Client/Year
Counseling
$4,575
$ 75
$ 7,351
$ 121
Diagnostic and Evaluation
1,647
27
7,500
123
Physical/Mental Restoration
-
-
211,969
3,475
Training
1,098
18
11,040
181
Placement
-
--
585
10
Maintenance
-
-
107,338
1,760
113
Services to Family Members
-
-
-
-
Transporation
1,403
23
18,957
310
Aid/Attendent Service
-
-
69,507
1,134
Other
915
15
4,346
71
Total
$9,638
$158
$438,593
$7,190
*Only 1976 data is available for the Berkeley Project.
Table 29
Project: New York
Total and Average Cost Per Client by Cost Category
Project Funds and Total Funds, 1976 and 1977
Project Funds
Total Funds
Total
Per Client/Year
Total
Per Client/Year
Counseling
$ 483
$ 7
$ 1,000
$ 14
Diagnostic and Evaluation
20,045
286
102,259
1,461
Physical/Mental Restoration
29,549
422
39,355
562
Training
63
1
54
1
Placement
-
-
-
-
-
Maintenance
-
-
-
114
Services to Family Members
8,423
120
12,800
183
Transporation
693
10
685
10
-
Aid/Attendent Service
-
-
-
Other
6,389
91
60,904
870
Total
$65,645
$938
$217,057
$3,101
Table 30
Project: San Antonio
Total and Average Cost Per Client by Cost Category
Project Funds and Total Funds, 1976 and 1977
Project Funds
Total Funds
Total
Per Client/Year
Total
Per Client/Year
Counseling
$ 9,797
$ 272
$10,064
$ 280
Diagnostic and Evaluation
4,917
137
13,442
373
Physical/Mental Restoration
3,808
106
195,673
5,435
Training
32,051
890
59,454
1,651
Placement
-
1
1,767
49
Maintenance
4,625
128
98,962
2,749
115
Services to Family Members
245
7
670
19
Transporation
2,073
58
7,575
210
Aid/Attendent Service
-
-
7,440
207
Other
9,210
256
14,421
400
Total
$66,726
$1,853
409,468
11,374
Appendix A
Tables on Client Characteristics
3
Table A-1
Mean Age and Number of Clienta by Project, Sex, Race
All Clienta, at Intake
Male
Female
Male and Female
White
Black
Htsp.
Am. Ind.
Other
Total
White
Black
Utsp.
Am. Ind.
Other
Total
Total
30.3
36.3
30.3
--
28
31.8
35.4
38.7
--
--
51.0
36.8
33.6
Age
Barkeley
(No.)
(29)
(1)
(46)
(19)
(6)
--
--
(1)
(26)
(72)
(12)
(4)
:
36.0
43.4
35.0
31.3
--
--
41.0
37.8
Age
38.2
31.2
21,0
--
--
New York
(No.)
(32)
(5)
(3)
--
--
(40)
(17)
(2)
(3)
--
--
(22)
(62)
Age
34.5
--
--
34.6
40.5
--
23.5
--
35.0
39.2
36.6
37.0
--
Salt Lake
(2)
(40)
(28)
--
(2)
--
(1)
(31)
(71)
(No.
)
(38)
:
--
--
Age
14.2
38.9
47.6
41.0
34.8
--
--
38.0
38.4
22,0
47.5
:
--
San Antonio
(tto.)
(13)
(1)
(8)
:
(22)
(5)
(2)
(17)
--
--
(24)
(46)
--
42.0
29.0
40.8
44.7
--
--
--
16.0
44.0
42.1
Age
41.2*
45.0
--
Seattle
(No.)
(49)
(1)
--
(4)
(3)
(59)
(40)
--
--
--
(1)
(41)
(100)
ABC
36,6
35.6
37.5
42,0
28.8
36.5
41,9
38.4
33.3
--
34.0
40.2
38.0
TOTAL
(No.)
(161)
(21)
(17)
(4)
(4)
(207)
(109)
(10)
(22)
--
(3)
(144)
(351)
A Had greatest variance.
Table 1-2
Primary Disability of Clients, by Project,
All Clients, at Intake
Total, by
Berkaley
New York
Salt Lake
San Anconio
Seattle
Disability
Visual
No.
5
-
2
46
-
53
Impairment
:-
9.4
-
3.8
86.8
-
%1
6.9
-
2.3
100
-
15.1
Hearing
No.
1
-
1
-
-
2
Impairment
:-
50.0
-
50.0
-
-
.1
1.4
-
1.4
-
.
0.6
Three or
No.
40
57
54
-
49
200
more Limbs
:-
20.0
28.5
27.0
-
24.5
%i
53.6
9.19
76.1
-
48.5
56.3
1 upper
No.
7
-
-
-
23
30
limb and I
:-
23.3
-
-
-
76.7
Lower Limb
21
9.7
-
-
-
22.8
8.5
.
1 or both
No.
-
1
1
-
3
5
upper limbs
:-
-
20.0
20.0
-
60.0
101
-
L.6
1.4
-
3.0
1.4
I or both
No.
13
I
4
-
L2
30
lower Limbs
:-
43.3
3.3
13.3
-
40.0
%1
18.1
1.6
5.6
-
11.9
3.5
Trunk, back, No.
-
2
3
-
7
12
spine
:-
-
16.7
25.0
-
58.3
%1
-
3.2
4.2
-
6.9
3.4
Amputation No.
2
-
2
-
2
6
:-
33.3
-
33.3
-
33.3
:1
2.8
-
2.8
-
2.0
1.7
Mental
No.
-
-
-
-
I
1
Recardation
:-
-
-
-
-
100.0
zi
-
-
-
-
1.0
0.3
Endocrine,
No.
1
-
2
-
4
7
Epilepsy,
:-
14.3
-
23.6
-
57.1
Cardiac
:1
1.4
-
2.8
-
4.0
2.0
Respiratory, No.
1
1
2
-
-
4
Digestive,
:-
25.0
25.0
50.0
-
-
Ganetour.
7.1
1.4
1.6
2.8
-
4
1.1
Speech and
No.
2
-
-
-
-
2
Other
:-
100.0
-
-
-
-
:1
2.3
-
-
-
-
0.6
Total,
No.
72
62
71
46
101
352
by project
i
"
1
20.3
17.6
20.2
13.1
28.7
100
-
Table d-3
Secondary Disability of Clients, by Project,
All Clients, at Incake
Total, by
Berkelav
New York
Salt Lake
San Anconio
Seattle
Disability
Visual
No.
2
I
2
-
-
5
Impairment
:-
40.0
20.0
40.0
-
-
=1
8.7
2.1
4.2
-
-
2.6
Hearing
No.
4.
-
1
4
2
11
Impairment
:-
36.4
-
9.1
36.4
18.2
%1
17.4
-
2.1
9.1
7.7
5.8
Three or
No.
-
20
-
1
1
22
more limbs.
7.-
-
90.9
-
4.5
4.5
%1
-
41.7
-
2.3
3.3
11.6
1 upper
No.
2
-
-
2
-
+
11mb and 1
7.-
50.0
,
-
50.0
-
lower Limb
zi
8.7
-
-
4.5
,
2.1
I or both
No.
1
1
I
-
I
4
upper Limbs
%-
25.0
25.0
25.0
-
25.0
%
4.3
2.1
2.1
-
3.8
2.1
I or both
No.
1
1
-
I
1
3
Lower limbs
7-
33.3
33.3
-
33.3
,
Zi
4.3
2.1
-
2.3
-
1.6
Trunk, back,
No.
1
4
1
3
1
10
spine
:-
10.0
40.0
10.0
30.0
10.0
%1
4.3
8.3
2.1
6.8
3.8
5.3
Amputation
No.
2
,
2
I
!
6
:-
33.3
-
33.3
16.7
16.7
21
8.7
1
4.2
2.3
3.3
3.2
Mental Illnes
No.
3
-
7
14
2
26
7.-
11.5
-
26.9
53.8
7.7
%1
13.0
-
14.6
31.8
7.7
13.3
Mental
No.
-
-
3
9
3
15
Recardacion
7.-
-
-
20.0
60.0
20.0
=1
-
-
6.3
20.5
11.5
7.9
Endocrine,
No.
5
3
1
9
7
25
Epilepsy,
:-
20.0
12.0
4.0
36.0
28.0
Cardian
%1
21.7
6.3
2.1
20.5
25.9
13.2
Respiratory,
No.
'
18
3
-
2
23
Digestive,
:
,
78.3
13.0
-
8.7
Ganacou.
%1
-
37.5
6.3
-
7.7
12.2
Speech and
No.
2
-
5
-
5
12
Other
16.7
,
41.7
-
41.7
%1
8.7
'
10.4
-
19.2
6.3
Don't Know,
No.
-
-
22
-
1
23
Not Available
7.-
-
-
95.7
-
4.3
%1.
,
-
45.8
-
3.3
12.2
Tocal,
No.
23
43
48
44
25
189
by project
:-
12.2
25.4
25.4
23.3
13.3
Table A-4
Percent Distribution by Income Level, 1978*
Clients and U.S. Population
Income Level
Group
Under
3,001-
5,001-
6,001-
7,001-
10,001-
12,001-
15,001-
20,000
3,000
5,000
6,000
7,000
10,000
12,000
15,000
20,000
and up
U.S. Population %
3.6
5.7
3.5
3.7
10.9
7.2
11.3
17.8
36.3
(cum %)
(3.6)
(9.3)
(12.8)
(16.5)
(27.4)
(34.6)
(45.9)
(63.7)
(100)
Client Population %
24.9
17.0
5.9
3.9
20.3
6.6
8.9
6.6
5.9
(cum %)
(24.9)
(41.9)
(47.8)
(51.7)
(72.0)
(78.6)
(87.5
(94.1)
(100)
A
1977 figures used for U.S. population. Actual figures were unavailable, but would be higher, further
increasing the difference in income between clients and the general population.
Table A-5
Mean Client Income, By Sex and Race,
All Clients, at Intake
Race
Sex
White
Black
Other
All Clients
Male
4,180
3,008
2,191
3,831
Female
3,316
3,066
1,945
3,053
@
Table A-6
Largest Stugle Source of Client Income, by Race and Sex,
All Clients, 41 Intake
WHITE
BLACK
HISPANIC
OTHER
SEX, TOTAL
Subtotal
Subtotal
Subtotal
Subtotal
TOTAL
Male
Female
Mile & Fem
Male
Female
Mala & Few
Malu
Female
Hale & Years
Male
Female
Hale & Few
Male
Female
BY SODUCE
No.
9
3
12
1
0
1
-
-
-
-
10
3
13
Hundy, wages
and unlary
%
6.9
3.4
5.5
5.6
0
3.6
-
-
-
-
5.8
2.5
4.5
1
1
-
-
-
-
-
-
1
-
1
No.
-
-
Income from
self employment
x1
-
0.6
-
0.5
-
-
0.3
8.9
-
-
-
-
-
No.
56
31
87
6
0
6
5
1
a
8
0
a
75
34
109
SSDI
x1
39.9
33.3
0
21.4
33.1
15.0
22.9
100.0
0
88.9
43.6
28.8
37.6
42.7
35.6
No.
33
27
60
10
9
19
10
11
21
-
-
53
49
102
SS1
21
25.2
31.0
27.5
55.6
90.0
67.9
66.7
65.0
65.7
-
-
30.8
41.5
35.2
6
0
1
1
-
-
2
5
7
No.
2
4
-
-
old age Sur-
vivors Insurance
x1
1.5
4.6
2.8
0
5.0
2.9
-
-
1.2
4.2
2.4
-
-
Unemployment,
Veterans, prl-
No.
17
3
20
0
1
1
0
1
1
-
-
17
5
22
vate pension,
Workman's Com-
21
13.0
3.4
9.2
0
10.0
3.6
0
5.0
2.9
-
-
9.9
4.2
7.6
pensation, etc.
No.
23
-
Other (divi-
13
-
10
13
23
10
-
-
-
-
dends, Interest,
21
14.9
10.6
-
5.8
11.0
7.9
rental Income,
7.6
-
-
-
-
-
etc.)
No.
1
5
6
1
0
1
0
2
2
0
1
1
2
B
10
AFDC
x1
0.8
5.7
2.8
5.6
0
3.6
0
1.0
5.7
0.0
100.0
11.1
1.2
6.8
\
1
3
-
-
-
-
2
1
3
Railroad.
No.
2
-
-
Refirement and
1.5
1.1
1.4
-
-
-
-
1.2
0.8
1.0
Disability
21
-
-
172
118
290
100.0
A
Does not Include 72 clients for which data was not available, who didn't know, or had no Income.
Table A-7
Number and Percentage Distribution of Clients Employed, NOT Employed, by Sex and Race,
All Clients, at Intake
WHITE
BLACK
HISPANIC
OTHER
TOTALS
Male
Vemale
Total
Male
Female
Total
Male
Female
Total
Male
Female
Total
Male
Female
Total
No.
121
82
203
18
,
25
13
21
34
6
1
9
153
113
271
Not Employed,
Total
x1
77.6
82.0
79.3
90.0
70.0
83.3
76.5
95.5
87.2
75.0
100.0
81.8
78.6
83.7
80.7
(-Worked in past)
(66)
(57)
(123)
(15)
(3)
(18)
(4)
(6)
(10)
(4)
(2)
(6)
(89)
(68)
(157)
(-Never worked)
(55)
(25)
(80)
(3)
(4)
(7)
(9)
(15)
(24)
(2)
(1)
(3)
(69)
(45)
(114)
No.
35
18
53
2
1
5
4
1
5
2
0
2
43
22
65
Employed
21
22.4
18.0
20.7
10.0
30.0
16.7
23.5
4.5
12.8
25.0
0.0
18.2
21.4
16.3
19.3
201
135
336
100
Appendix B.
DATA COLLECTION METHODOLOGY
The primary goals of the study were to evaluate the independent living
rehabilitation demonstrations and to analyze the service needs of and costs
incurred by the severely handicapped individuals served by them. To accomplish
these goals, data from all projects were collected on standardized forms which
assessed independent living capability. The forms were designed to be analyt-
ically compatible to those used in the Comprehensive Service Needs Study (CSNS),
completed by The Urban Institute in June 1975. Given the diversity of program
structures used by the demonstration projects, and the diverse mix of clients
in them, assessment of the projects was a challenging task. The procedures
followed to obtain the needed data are outlined in this section.
A.
The Survey Instruments
Two survey instruments were developed to collect information on the clients
served by the projects. One was called the data protocol, which collected
information on client status, needs, and progress. The other was the cost form
which collected information on services provided, cost of those services, and
sources of funds utilized.
1. The Data Protocol
The data protocol was constructed using items in the CSNS survey of the
most severely disabled and newly developed items. The major types of
variables in the data protocol were:
- Demographic Characteristics (I.D. number, race,
sex, age, type of housing, household composition,
income, insurance, education and employment);
- Disability Diagnoses (Primary and Secondary);
- Status of Medical Condition
- Severity Scales (PULSES, Barthel, Functional
Limitations) ;
- Social Interaction;
- Transportation;
- Architectural Barriers;
- Equipment (Owned, Used and Needed) ;
- Services Received and Needed;
- Service Programs Contacted; and
- Medical Expenses.
A pretest of the questionnaire was conducted by each project on
three of their clients. Revisions were made based upon comments from
the projects and resulted in a final data protocol. A demonstration
manual was written to provide instructions for using the questionnaire,
as some of the questions were complex and required care attention.
2. Cost Forms
The quarterly cost data form was designed to provide a detailed break-
down of the costs of services, as well as the sources of funding, for
each client in the program. The cost forms had ten major sections;
counseling; diagnostic and evaluation; physical and mental restoration;
training; placement; maintenance; services to family members; transpor-
tation; aid and attendant services; and other. These service categories
were essentially those used in the regular VR reporting system.
Several cost categories were added or expanded in an attempt to
capture information on the unique characteristics and emphasis of
the Section 130 Demonstration programs.
Rehabilitation Service Administration, Statistical Reporting Systems,
Rehabilitation Services Manual, July 1974.
Cost forms were completed quarterly for each client. During
the early part of the study, however, costs were collected retro-
actively from client intake to December 31, 1976 (data forms became
available) and subsequent quarters thereafter. In this manner, the
cut-off point of the cost forms would be congruent with that of the
protocols. Actual expenditures for each service were collected.
Only when actual figures were unavailable were estimates of the costs
used.
In addition to obtaining information on services provided which
utilize project funds, the forms gathered information on services
funded through other programs, including the regular VR program.
These other funding resources or "similar benefits" were a key part
of developing effective rehabilitation programs as costs were high
for these clients, and project funding was low. Data on the use of
similar benefits has been lacking within the regular VR program to
date. To determine what is really needed to successfully rehabilitate
a client, valid information on the types of services funded through
vocational rehabilitation and other agencies or programs is essential.
The additional funding needed to design a program of independent living
for the severely disabled is often overstated because the potential
for effectively utilizing similar benefits is not taken into account.
Collecting information on use of other funding sources is fundamental
then in identifying the actual amounts of money needed by VR to
implement an independent living program.
The data protocols were administered to clients at intake and at
equal yearly intervals. Cost forms were administered in the quarter
which the client entered the program and each quarter thereafter.
Communication from project staff was encouraged especially when dis-
crepancies were discovered or if technical assistance was needed. As
forms were returned, they were entered in the 1og books to keep track
of forms received or missing. Not only did this procedure help to
remind projects when certain forms were due but it also updated the
records of those clients who had died, had moved or were otherwise
"lost to study. " An initial manual edit was then performed on the
data and the majority of missing data was discovered.
A list of incomplete and/or incorrect cost forms, by I.D. and
project, was constructed to determine whether corrections would be
obtained by telephone or through written correspondence. The decid-
ing factor, though, was usually the number of forms which needed to
be corrected. If time permitted, and the number of errors was sub-
stantial, the incorrect protocol and cost forms were returned to the
respective project for correction.
Upon their return and review, these forms were sent to be key-
punched. After it was determined that the data was in satisfactory
condition, it was entered into computer files and stored for later
analysis. An edit program was run on the data to flag logic errors,
stray or missing data. Errors appearing on the edit printout were
corrected and, finally, the data was prepared for analysis.
At this point, the analysis which was written in advance could
be placed in effect. Usually a frequency distribution of each variable
was made along with several two-way crosstabs. Under the direction of
senior staff persons, higher level analyses were performed on the
data, after which the results were analyzed for the yearly reports.
The incidence of data-related problems encountered during the course
of the Section 130 study was partially eliminated as staff of the
demonstrations become more familiar with the forms and procedures.
B.
Problems in Data Collection
The most consistently found project errors throughout the three years of
the study were the following:
1. Timeliness
Protocol and cost forms, expected no later than one week following
the due date, were received late. In some instances, forms were
received several months late, even after repeated requests for
them were made. This created serious delays in producing annual
reports on the projects.
2. Missing Forms and Information
In addition to missing forms there was a high incidence of missing
information, especially concerning percentages of project and other
funding sources. Cost forms without these elements were returned
to the project for correction.
3. Unknown Information
In many sections of the data protocol, a "don't know" code was
given for those cases where the information. was unobtainable.
There appeared to be excessive use of this code especially in
the first year.
4. Skip Patterns
Skip patterns (e.g., if answer to No. 6 was yes, skip to question
8) appeared throughout the protocol. This sometimes led to
inappropriate questions being answered, or other questions
being skipped over.
5. Severity Scores
It was discovered, by manual and computer edit, that PULSES and
Barthel total scores were added incorrectly. Scores were
corrected by The Urban Institute.
C.
Other Data Collection Activities
Major revisions were made in the data protocol during the third year of the
study. Questions within each section were reworded to reduce their ambiguity.
Revisions to the instruments manual were made to correspond to the changes in
in the data protocol. The major problem associated with the revisions was
that extreme caution had to be exercised when analyzing the two, differently
formatted, data protocols.
THE URBAN INSTITUTE
2100 M Street, N.W., Washington, D.C. 20037