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4
JULY-AUGUST 1978
AMERICAN REHABILITATION
"Putting
IT All
Together"
COMMISSIONERS COMMENTS
Putting It All Together
Robert R. Humphreys
Although the term "independent
In terms of federal program activ-
living" is relatively new, its concept
ity, independent living means services
has been evolving for a number of
to disabled people without an im-
years. As it is with most new ideas, it
mediate vocational goal, and services
germinated in small pockets of con-
over and above those traditionally
sciousness at various levels and in
provided through vocational rehabili-
various locations in the nation. It was
tation to improve the quality of life. It
generated as a result of unfulfilled
also means alternative living
needs of severely disabled people,
arrangements.
which needs developed in a variety of
This issue of American Rehabilita-
areas, such as a desire for better de-
tion presents a variety of historical
vices, accessible housing and trans-
and "state of the art'' articles about
portation, personal care assistance,
the concept of independent living.
and improved access to agencies.
The messages are given from differ-
In another, but not unrelated area
ing perspectives. It is particularly fit-
of activity, groups of handicapped
ting to dedicate this issue to inde-
people formed to engage in self-help
pendent living, for it is an idea, truly,
efforts as a result of the need for bet-
whose time has come. For the first
ter information about service prob-
time, the idea is supported by HEW,
lems and deficiencies. These groups
by the Congress, and, yes, by the
found that their unity could be benefi-
President.
cial to themselves and to other dis-
A vibrant concept of indepen-
abled people. Such movements offer
dence-building is underway that was
several different messages. Most im-
initiated mainly by the people who
portant is a maturity expressed in
will benefit directly from the effort
self-confidence that disabled people
expended and who will as a result
can guide their own destinies, a con-
contribute to the society in which they
The editor acknowledges with
cept that disabled people themselves
live. All of society will share posi-
warm thanks the invaluable help of
too long ignored or even feared and
tively in their accomplishments.
John Driscoll, Ph.D., of HEW Re-
that society for too long denied them.
The front cover and the headline
gion I, Herbert Leibowitz, Ph.D.,
They also express the idea that dis-
above express the concept of inde-
of HEW Region IX, and Leonard
abled people are in no way different
pendent living: Putting It All To-
Green, Ph.D., of RSA for the con-
from "TABS" (temporarily able
gether. That is, achievement at the
cept of this special edition and
bodied) whole beings whose needs
highest level possible. That has been
their practical help in its planning.
range from vocational to social,
a noble purpose in every civilized so-
Additionally, Dr. Green and Lee
spiritual, educational, and recrea-
ciety, and it is in this context worthy
H. Coleman, Ph.D., of RSA re-
tional. They reflect the disabled citi-
of our best support and dedicated
viewed all of the articles carried in
zen's right to share fully in commu-
cooperation. On behalf of RSA, I
this issue.
nity life and the responsibility to
pledge that full support and coopera-
contribute to that community.
tion.
AMERICAN REHABILITATION
Volume 3, Number 6
The weakest ink is better than the strongest memory.
July-August 1978
2 Independent Living: Concept and Programs
Susan Stoddard
6 IL: Movement And Programs
Lex Frieden
10 Barrier-Free Communities
Catherine Hillard
16 The Illinois Approach
James S. Jeffers
17 Second Generation: New England
John V. Driscoll, Ph.D.
Bruce Marquis, Paul
J. Corcoran, M.D.,
and Frederick A.
Fay, Ph.D.
22 IL In Massachusetts
Elmer C. Bartels
23 Second Generation: West Coast
Bruce M. Brown
31 IL: A Legislative View
Kathaleen Arneson
U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE
Joseph A. Califano, Jr., Secretary
Rehabilitation Services Administration
Robert R. Humphreys, Commissioner
Ron Bourgea, Acting Director Public Affairs
Ron Bourgea, Editor
Margaret Cauthorne, Editorial Assistant
Barbara Pegram, Admin. Assistance
PHOTO CREDITS: Christopher Springmann, Black Star, Cover I (art adaptation by Antoinette Reynolds); Christopher Springmann,
Black Star, page 5; New Options transitional living project, Texas Institute for Rehabilitation and Research, page 8; Ivan Massar,
Black Star, pages 19 and 20; Fred Kaplan, Black Star, pages 25 and 29.
American Rehabilitation is the official,
Opinions expressed are those of their
S.W., Washington, D.C. 20201.
bimonthly publication of the Rehabili-
authors and do not necessarily reflect the
Paid subscriptions are accepted (see
tation Services Administration. Use of
views of the Department and Agency.
Cover IV for blank). Correspondence con-
funds for printing was approved by the
Manuscript and article suggestions are
cerning paid subscriptions should be sent
Office of Management and Budget on
welcome. Write to Editor, Rehabilitation
to Superintendent of Documents, P.O.
June 23, 1975.
Services Administration, 330 C Street
Box 1533, Washington, D.C. 20402.
Independent Living:
Susan Stoddard
Concept And Programs
"To us, independence does not mean
with insufficient knowledge and re-
one of the pioneers in the task of or-
doing things physically alone. It
sources. The solution to the problem
ganizing and integrating existing serv-
means being able to make independ-
of service gaps and insufficient coor-
ices, creating new services, and re-
ent decisions. It is a mind process not
dination is a comprehensive service
moving barriers to assist people with
contingent upon a "normal" body.
delivery system that combines finan-
severe disability. CIL services and
Judy Heumann, Center for Inde-
cial support, physical modification
clients illustrate the concept of inde-
pendent Living, Berkeley, California.
services, rehabilitation, and consumer
pendent living programs.
rights. The goal is a network that pro-
In its 6 years of operation, CIL has
When those active in the disabled
vides a continuum of services
had a major effect on the accessibility
movement use the term "independent
throughout the person's lifetime. A
and responsiveness of the Bay Area
living,' they are referring to their
great many people who now live in
community and the ability of that
ability to participate in society-to
group living arrangements could live
community's residents to live more
work, have a home, raise a family,
in the community if the appropriate
independently. CIL was started by a
and generally share in the joys and re-
services were available to them.
group of people with severe disabil-
sponsibilities of community life. "In-
A diagram of the comprehensive
ities who came from an experiential
dependent living" means freedom
service concept was developed for
base and felt a strong dissatisfaction
from isolation or from the institution;
the first National Conference on
with the institutional network that so-
it means the ability to choose where
Independent Living in Berkeley,
ciety had set up to help them. Today,
to live and how; it means the person's
California, in October of 1975. The
CIL has 5,000 active clients in its
ability to carry out activities of daily
conference was sponsored by the Re-
caseload. A breakdown of new clients
living that nondisabled people often
habilitation Services Administration
served by CIL in January 1978 shows
take for granted.
(RSA) and the Center for Independent
how CIL clients vary widely in terms
In order for a person with severe
Living (CIL) in Berkeley. The diag-
of disability, age, and time from
disability to live independently, a
ram was created by Ed Roberts, then
onset of disability (see Tables 1 and
wide range of services may be neces-
Executive Director of CIL, his staff,
2).
sary. Each severely disabled person
and Dr. Herb Leibowitz of RSA, Re-
For these clients, CIL offers a wide
has unique service needs and re-
gion IX. The diagram (Figure 1) illus-
range of services:
quirements; no one single service pre-
trates the relationship between the
Guidance to Service System. In-
scription or housing situation is the
persons with disability, the family
formation, referral, and follow-along
answer for everyone. Individual
centers for Independent Living, estab-
to insure that the person gains the
choice is critically important.
lished service systems such as state
services that can help him.
One of the problems that people
rehabilitation agencies, and the many
Assistance Referral. Attendant,
with severe disability have faced in
distinct "independent living" serv-
reader, interpreter referral; respite
this country has been the existence of
ices that make up the comprehensive,
care referral for families.
gaps in our human service systems
independent living service package.
Role Modeling and Counseling and
and the lack of alternatives from
The diagram shows the end to the
family counseling to help the person
which to choose. The Comprehensive
individual's process as "point of full
identify needs and aspirations and to
Needs Study reviewed the many pro-
participation This does not neces-
assist him in meeting goals.
grams within HEW that provide ser-
sarily mean the end of independent
Independent Living Skills Assis-
vices and financial assistance to hand-
living services. Such services as at-
tance. 1) Identifying equipment
icapped people. Its writers found that
tendant care and peer counseling may
needed; 2) working with the person to
the programs serving the severely
always be important as support ser-
ensure that modifications to environ-
handicapped are inequitable, contain
vices for the severely disabled.
ment are accomplished, and 3) assist-
severe gaps in services, suffer from
The Center for Independent Living
ing the person and his family in iden-
inadequate control, and are operated
(CIL) in Berkeley, California, was
tifying training needs.
2
AMERICAN REHABILITATION
Community and Legal Advocacy.
Advocating for the development of an
peer counseling
accessible and supportive environ-
ment.
education
Health Maintenance Assistance.
" clinics
recreat
Housing Referral and Assistance in
/
Housing Modifications.
advocacy
HABILITATION
Job Development and Other Serv-
ices.
Rehabilitation
These CIL services are designed to
State
stabilize the environment of a person
with severe disability, thereby
Tehab
/
Independent
minimizing the handicapping aspects
Family
CRISTS
Centers for
REHABILITATION
Living
employment
career development
fully accessible communities
Family
of disability and helping him gain
equal opportunity.
POINT OF DISABLILITY
CIL is not a residential center, but
FULL PARTICIPATION IN SOCIETY
does assist a person to locate accessi-
ble housing.
In addition to these services, CIL
FIGURE I
considers itself a training institution
for people with disabilities; every job
is a training job leading to employ-
ment in the primary labor market.
Table 1
Currently, CIL employs 105 persons,
83 New Clients Served by Center for Independent Living in One Month
half of whom are severely disabled.
(January 1978)
There are training programs in com-
puter programing and paralegal
services and a university degree pro-
Age Range
New Clients
Percentage
gram coordinated with Antioch
College/West. Many people with dis-
0-19
5
06.0%
abilties work as volunteers within the
20-29
33
39.8
organization. All major executive of-
30-39
19
22.9
fices and the majority of executive
40-49
3
3.6
board seats are held by severely dis-
50-59
5
6.0
60+
abled people.
18
21.7
—
Most independent living programs
83
and centers (ILPs) developed
100.0%
throughout this country are modeled
after key features of the program at
Length of Time
New Clients
Percentage
CIL. They differ in organizational
Disabled
form and range of services but tend to
share the following basic characteris-
0-2 yrs
11
13.3%
tics:
3-5 yrs
7
8.4
6-10 yrs
13
15.7
1. They share a basic philosophy.
11-19 yrs
6
7.2
These centers are based on the be-
20-48 yrs
12
14.5
lief that the disabled themselves must
entire life
26
31.3
be involved in the development of
undetermined
8
9.6
services that are provided to meet the
-
needs of disabled people; that the
83
100%
needs of the disabled can be met most
3
effectively by comprehensive pro-
grams which combine self-help and
Table 2
professional expertise in the provision
Disability of 83 New Clients (includes primary disability and some sec-
of services; and that disabled people
ondary disability, so some clients appear twice)
can be more integrated into their
community.
Type of Disability
Disabilities of
2. They focus on individual need.
83 New Clients
Focus is on the person with disabil-
ity and making the most of that per-
Developmental disability
13
son's opportunity for participation in
Sensory loss
16
society. Service is not restricted to a
Metabolic disorder
3
specific disability group (e.g., spinal
Circulatory disorder
7
cord injured) or to people eligible for
Progressive disability
8
a particular program (e.g., SSI).
Orthopedic disability
5
3. They have major consumer
Arthritis
4
involvement.
Chronic pain
3
Most programs are managed or di-
Cancer/leukemia
3
rected by the people with severe dis-
Paralysis
20
ability and many of the staff members
Old age
4
are disabled.
Other
12
Total
98*
4. They focus on advocacy and peer
support.
Independent living centers and pro-
Tables 1 & 2 were prepared by Jeff Moyer and Linda Perotti of CIL,
grams work as advocates and role
Berkeley.
models to develop a public awareness
* Includes some clients for whom both primary and secondary disabilities
of the needs and capabilities of people
were recorded.
with severe disabilities as well as an
awareness within the disabled person
egory of disability. (However, the
Independent living programs have
of his potential for life of greater par-
ability to provide various services is
started all over the country. Their
restricted by eligibility requirements
popularity is due to their responsive-
ticipation and involvement.
associated with various public pro-
ness to the needs of the severely dis-
5. They provide a range of services.
grams.)
abled person. In addition to this
They focus on services needed to
grass-roots development, other nota-
move people into the mainstream. In
6. Service provision throughout the
ble events provide landmarks in the
California, ILPs vary in the number
rehabilitation process.
rapid change in independent living
Services are not limited to one
and kinds of services provided, de-
from an idea to a more and more
pending on the needs of their com-
phase of rehabilitation, but are pro-
clearly defined expression of need for
munities. All of them, however, do
vided, as needed, for life.
services, legislation, and resources.
provide certain core services, includ-
7. They provide new training and
These landmarks, in the articulation
ing: community development; peer
employment opportunities for people
and development of independent liv-
support and counseling; attendant,
with severe disabilities.
ing, include:
reader, and interpreter referral; and
Peer counseling positions and other
The comprehensive Needs Study
personal and financial advocacy.
employment within the organization
and its five ongoing demonstration
They provide services needed by a
provide employment and on-the-job
projects, based in hospitals, state vo-
person, either through integration of
training.
cational rehabilitation programs, and
public and private services available
8. They represent and serve a broad
in a consumer-run organization.
in the community or through direct
range of disabilities.
The first national Conference on
provision of services not available
These programs are open to all who
Independent Living, sponsored by
elsewhere. Service is provided ac-
need their assistance, including dis-
RSA and held at the Clarement Hotel
cording to need, not according to cat-
abled people and their families.
in Berkeley, in October 1975.
4
The inclusion of independent liv-
ing topics in important national re-
habilitation planning conferences,
such as the National CSAVR confer-
ence, Washington D.C., May, 1977.
The use of state innovation and
expansion money by several state re-
habilitation agencies.
Development of peer counseling,
where disabled people counsel other
disabled people on activities of daily
living, disability experience, and
provide role models for independent
living.
The inclusion, in the White
House Conference on the Handi-
capped, of papers on housing and
service needs for independent living
and the economics of disability.
The recènt opening, within HUD,
of an Office of Independent Living.
The recent, successful demon-
stration of disabled people nationally,
in San Francisco, and then Washing-
ton, D.C. to accomplish the long-
delayed signing of the Section 504
regulations of the Rehabilitation Act
of 1973.
RSA funding of a second national
Independent Living Conference, to be
held in 1978 in Texas.
The development of 36 inde-
pendent living programs throughout
the country. (The list of these centers
(Top) Edward Roberts, Director, California Department of Rehabilitation,
has been compiled by HUD's Inde-
takes an office lunch break but manages some business also. Mr. Roberts was
pendent Living. office.)
an original member of the Berkeley CIL. (Bottom) Impromptu CIL meeting
Federal legislation proposals: At
features (l to r) Barry Ryan, project director, comprehensive needs study;
the time of the writing of this review,
author Stoddard; Jeff Mayer, CIL blind services; and Janice Krones, CIL
bills to extend the Rehabilitation Act
peer counselor.
of 1973 are being drafted and debated
These landmarks in independent
American Rehabilitation are only the
in both the House and the Senate.
living mark the development of the
beginning of development of the
These bills include differing recom-
concept. We are still a long way from
comprehensive delivery system
mendations for independent living
making independent living services
necessary to assure all people with
services and/or programs. The admin-
available to all who need them. To
disability of the rights, joys, and re-
istration's recommended proposals to
accomplish that end, we need a com-
sponsibilities of full, productive, and
amend and extend the Rehabilitation
mitment to a comprehensive service
independent lives.
Act included the establishment of in-
program in which ILPs will play a
dependent living rehabilitation ser-
major part.
vices on a limited scale through
The programs and projects which
Ms. Stoddard is a senior analyst with
project grants.
are described in this special issue of
Berkeley Associates.
5
IL: Movement And Programs
Lex Frieden
The implicit theory behind inde-
the goals of total integration or
operation as a research and demon-
pendent living is that, given appro-
mainstreaming in mind, the Center
stration project, began working or
priate supportive services, accessible
provides several basic counseling
going to school while they lived
environments, and the information
services (e.g. family counseling, per-
there. The average number of resi-
and skills necessary to benefit from
sonal counseling, self-care counsel-
dents in the program at any given
them, severely disabled people can
ing, etc), attendant referrals and train-
time was 12.
exercise self-determination and par-
ing, mobility training, wheelchair
Most people graduated from the
ticipate in all aspects of society. The
repair, transportation, and community
Cooperative Living program in about
theory is rather simply stated, but the
advocacy. According to Pflueger,
15 months and moved to more inde-
concept is not particularly compli-
"these and other CIL services are de-
pendent living arrangements in the
cated.
signed to stabilize the environment of
community. Many of these people
For many years, some severely
an individual with severe disabilities,
chose to continue sharing support
handicapped people have lived com-
thereby minimizing the handicapping
services and formed their own corpo-
paratively independent lives by find-
aspects of disability and helping the
rations to provide independent living
ing or making barrier-free homes or
person gain equal opportunity All
services. These organizations like In-
apartments and by securing attendant
of the chief administrators at the Cen-
dependent Life Styles and CLASP
care, transportation, and other support-
ter are severely disabled, as are a
(Cluster Living and Shared Providers)
ive services on an individualized
majority of its 105 employees. A pri-
exist in Houston today as independent
basis. Sometimes these arrangements
vate, nonprofit organization, CIL is
entities. They provide and coordinate
were very imaginative, sometimes
supported by a variety of sources, in-
attendant care and transportation in
they were fortuitous, and most often
cluding donations, project grants and
specific residential settings such as
they were circumstantial. In spite of
contracts, and direct service fees. The
apartment houses or condominium
these self-styled arrangements, pro-
facility where the Center is located
projects.
grammatic and broad-scale efforts to
primarily provides office space and
The Cooperative Living Project it-
facilitate independent living were
work space for various programs.
self actually evolved into an inde-
stifled by restrictive statutes and
At about the same time the disabled
pendent living skills training program
regulations.
students in Berkeley were organizing
called New Options. New Options is
The most widely known, and
CIL, a group of severely handicapped
designed to foster the integration of
perhaps the first effort at independent
people in Houston, who were former
severely physically disabled people
living for severely disabled people on
patients at Texas Institute for Re-
into their communities. The program,
a broad scale began in California. In
habilitation and Research, realized the
a 6-week transitional experience, pro-
the early 70's, a group of disabled
potential benefits of sharing services
vides information and skills required
students who had lived together in the
required to support independent living
by handicapped people for them to
Cowell Hospital Residence Hall at the
and began to plan the Cooperative
live independently.²
University of California formed the
Living Residential Project. Sponsored
Modeling different aspects of both
Center for Independent Living (CIL)
by TIRR and RSA, the project opened
the programs in California and Texas,
in Berkeley. Incorporated in 1972,
in 1972. Living in a barrier-free,
a group of people in Massachusetts
CIL was established as a self-help,
dormitory-style building near
established the Boston Center for In-
outreach program designed to expand
downtown Houston, the Cooperative
dependent Living. The BCIL founders
options and alternatives available to
Living residents hired and managed
envisioned "a consumer-run, self-
disabled people throughout the com-
their own attendants, arranged for
help community integrated with the
munity.
their own transportation on a shared
able-bodied where severely disabled
CIL now serves approximately
basis, and generally practiced the
individuals could develop independ-
5,000 persons with many different
skills required in order to live inde-
ent living skills. 3 The project
types of disabilities from Berkeley
pendently. Most of the 40 people who
opened in a theology building at Bos-
and the surrounding community. With
lived in the project in its 3 years of
ton University which was adapted to
6
AMERICAN REHABILITATION
be an accessible dormitory in 1974.
themselves, although most programs
maintenance. It should be emphasized
Since then, more than 50 people have
give preference to hiring qualified
that every independent living program
participated in its programs.
handicapped people. Their budgets
does not necessarily provide all pos-
Today BCIL provides supportive
are small-usually on the order of
sible independent living services. The
services for severely disabled people
$20,000 to $100,000. Financial sup-
focus, degree of involvement, or level
living in three types of environments.
port or funding usually comes from
of commitment of a program depends,
Some people whom the program
grants or donations. Additionally,
naturally, upon the availability of
serves live in a transitional-type facil-
some programs have begun to receive
existing community services, the
ity located in an apartment complex in
direct income for services rendered.
physical and social makeup of the
a Boston suburb. Others live in clus-
The universal service components
community, the needs of the program
ter housing-apartments adapted or
of independent living programs seem
participants, and the goals of the pro-
modified for handicapped persons
to be residential services, including
gram itself. Six major dimensions
where attendants are on call. A few
attendant care and housing or infor-
along which independent living pro-
live independently in their own homes
mation about them and the provision
grams are likely to differ have been
or apartments which they share with
and exchange of information required
outlined by Pflueger. 4 Each of these
personal care assistants.
by severely disabled people who are
may be viewed as a continuum along
Other programs, such as Creative
trying to become more independent.
which every independent living pro-
Living in Ohio and Atlantis in Col-
Other major services provided may be
gram will fall.
orado have been providing for some
transportation, peer counseling, inde-
Basically, the variables are:
time services and coordinating com-
pendent living skills training, political
1) Service setting (residential-
munity resources in a manner similar
advocacy, social and recreational
nonresidential). The setting in which
to those in California, Massachusetts,
services, health maintenance counsel-
services are provided will vary from
and Texas. More recently, programs
ing, legal advocacy and financial
strictly residential to totally nonresi-
supported by funding authorized in
counseling, and equipment repair and
dential. Services may be organized
Section 130 of the Rehabilitation Act
of 1973, by innovation and expansion
Figure 1
grants from state vocational rehabili-
MULTI-DIMENSIONAL COMPARISION PROFILE OF
tation agencies, by universities, and
THREE INDEPENDENT LIVING PROJECTS
by others have begun to expand op-
portunities for severely disabled
Cooperative
CIL
people in other communities.
Living
BCIL
Berkeley
Residential
At this time, there are approxi-
0
Non-residential
Service Setting
Service Setting
mately 35 programs which might eas-
ily be classified as independent living
programs. If one includes progressive
Transitional
Static Goal
Goal Orientation
group home projects, halfway houses,
Orientation
and other personal adjustment and
mobility training programs in this
Single Disability
census, there may be as many as 100
Type Served
0
Many Disability
Types Served
to 200. Most of these programs are
located in urban areas. They typically
serve fewer than 50 people at any
Direct Service
Indirect Service
given time. The primary client popu-
Delivery
Delivery
lation is made up of persons with se-
vere physical or developmental dis-
abilities. They are most often private,
Primary
Vocational Emphasis
0
0
Incidental Vocational
Emphasis
nonprofit entities and are affiliated
with various other voluntary and
health service organizations. Their
Paternal Helping
staffs may or may not be disabled
Style
ф
Ф
Peer Helping
Style
7
be seen as independent from, though
not necessarily exclusive of, voca-
tional involvement.
6) Goal orientation (transitional-
static). Some programs are very goal
oriented and transitional in nature.
Their objective is to help people move
from a level of dependence to one of
independence. Other programs are de-
signed to provide ongoing support for
people who may already have reached
a level of relative independence.
By assessing programs on the basis
of these aspects, it is possible to de-
scribe quite clearly what may at first
appear to be subtle differences be-
tween programs. For example, Figure
1 shows how one might project the
three programs described earlier.
By this analysis, it becomes appar-
ent that while all three of these pro-
grams are similar in some respects,
they also vary dramatically in some
ways. They are much alike in terms of
helping style, service delivery style,
or methods, and vocational emphasis.
In contrast, they function in different
Attendant care is often crucial to independent functioning of severely disabled
settings, their goal orientations di-
person.
verge, and their clientel or service
constituencies differ. This is all in
around specific housing projects or
while others are less specialized and
spite of the fact that they provide
they may be provided in a nonresiden-
serve people with a broader range of
most of the same services.
tial service center.
disabilities.
Although the key variables may be
2) Service delivery method (direct-
4) Helping style (paternal-peer).
identified, it is virtually impossible to
indirect). Services may either be de-
The image and feel of programs will
say what makes an independent living
livered directly by an independent liv-
vary from being paternalistic and au-
program successful or not. There are,
ing program or indirectly by referral
thoritarian to being earthy and egalitar-
however, several key themes which
to other service providers. The latter
ian. Programs which employ many
seem to characterize the movement
method is used mostly by programs
disabled people and many nonprofes-
and which may signal success.
which aim to coordinate existing ser-
sional or paraprofessional staff people
Historically, the independent living
vices in the community. Many pro-
will obviously be more oriented to-
movement has been characterized by
grams use a combination of service
wards self-help than those programs
a great amount of consumer involve-
delivery methods.
which employ mainly nondisabled,
ment and consumer control. This is
3) Range of disability type served
professional people who adhere to
more than likely due to the fact that
(single disability type-many disability
staunch, academic backgrounds.
the movement began during the late
types). Programs often vary as a re-
5) Vocational emphasis (primary-
60's-at the close of the Viet Nam
sult of the personal characteristics of
incidental). In some cases, programs
era-when people all over America
the people they are trying to serve.
may be seen as adjunct to or prereq-
were beginning to seek more control
Some programs focus on serving
uisite to vocational involvement and
over decisions which affected their
people with specific disability types
training. On the other hand, they may
lives. Also, the movement has been
8
associated with expanding noninstitu-
pendent living on a wide-scale, pro-
and live independently if they were
tional residential alternatives for se-
grammatic basis. The June 1975, Re-
supplied with supportive services to
verely disabled people. This emphasis
port of the Comprehensive Needs
enable them to live outside of institu-
probably reflects ties to earlier
Study suggests that the development
tions. It is also evident that many
philosophical concepts of deinstitu-
of an Independent Living Rehabilita-
severely disabled people, who are un-
tionalization and normalization.
tion Program is a most crucial deci-
able to work, are capable of substan-
Many independent living programs
sion area. In October 1975, the first
tial self-care and comparative social
are descendents of former halfway
National Conference on Independent
and psychological independence. In-
house projects or group homes.
Living was held in Berkeley. This
dependent living programs may help
Finally, independent living pro-
meeting, sponsored by RSA, brought
severely disabled people make a
grams have always been seen as
together the leaders and developers in
transition from a state of relative de-
sources of specific information and
the field of independent living for the
pendency to one of comparative inde-
referral. This is partly a result of the
first time. It became clear, at this
pendence. Independent living pro-
fact that they usually do not have the
point, that independent living was a
grams may also provide the means by
resources to provide direct services.
unique concept, distinct in many ways
which severely disabled people can
However, and more importantly, this
from more traditional approaches.
participate to the fullest extent possi-
presumably reflects a lack of coordi-
Innovation and expansion grant
ble in the normal day to day activities
nation of services which already exist
funds were first committed to sys-
of life.
in the community, as well as basic in-
tematically establish independent liv-
adequacies in those service systems
ing projects by the California
Mr. Frieden is New Options Research
when it comes to meeting the wide
Department of Rehabilitation in 1976.
Director, Texas Institute for Rehabili-
range and special needs of severely
During 1977, the independent living
tation and Research, Houston.
disabled people.
movement gained more recognition
These historical precedents have
and momentum. It was the major
References
not faded during the early develop-
topic of many national meetings. The
1) Pflueger, Susan. Independent
ment of the independent living
White House Conference on Handi-
Living. Institute for Research Utiliza-
movement. Consumer control and
capped Individuals recommended that
tion, Washington, D.C. December
consumer involvement remain the es-
independent living become a national
1977. Page 21.
sence of most successful independent
priority. The United States Depart-
2) Cole, J. A., Halden, B. L., and
living programs. With very few ex-
ment of Housing and Urban De-
Frieden, L. M. The New Options
ceptions, all of the extant independent
velopment formally created an Office
Project: A Live-In Program to Foster
living programs or centers provide
of Independent Living. HUD also
Social Adaptive Skills. Paper pre-
residential services, including attend-
promulgated regulations which
sented at scientific sessions of 53rd
ant care or information about them.
legitimized support of centers for the
Annual Session of the American Con-
Information exchange and referral
handicapped by community develop-
gress of Rehabilitation Medicine and
remain the basis of most programs
ment block grants.
the 38th Annual Assembly of the
and frequently are among the first
In July of this year, another Na-
American Academy of Physical
services provided by new independent
tional Conference on Independent
Medicine and Rehabilitation,
living programs.
Living will be held in Houston. It is
November 7-12, 1976, in San Diego.
Several noteworthy events or prog-
part of a Research Utilization Project
3) Fay, Frederick, Bartels, Elmer,
ress markers stand out in the evolu-
(RSA-RD22-P-59106/6-01) designed
Corcoran, Paul, and McHugh, Bob.
tion of the independent living move-
to produce educational material de-
The BCIL Report. Peter Reich,
ment in addition to aspects of the
scribing the concept of independent
editor. Regional Medical Rehabilita-
founding of various programs. The
living.
tion Research and Training Center
funding of the Comprehensive Service
Despite a relatively brief history
No. 7, Tufts, July 1977. Page 3.
Needs Study and its five ongoing
and comparatively little data, inde-
4) Pfleuger. Op. Cit.
demonstration projects authorized by
pendent living has established itself as
5) Wolfensberger, Wolf. The Ori-
the Rehabilitation Act of 1973 was
a valid, programmatic concept in re-
gin and Nature of Our Institutional
significant from the standpoint that
habilitation. It is clear now that many
Models. Human Policy Press, Syra-
means were provided to study inde-
severely disabled people could work
cuse. 1975.
9
Barrier-Free Communities
Catherine Hillard
This article is a followup to one
disabled people, and how these needs
physical performance needs of
published in this magazine in July-
can be met through planning and de-
people. A barrier free community is
August 1977. It presents the findings
sign. Institutional, constraints, such as
one in which all people, regardless of
of a study funded by the Office of Pol-
zoning and code restrictions, which
age or physical condition, can live as
icy Development and Research, U.S.
have often precluded the provision of
independently as possible and partici-
Department of Housing and Urban
accessibility, also reflect the lack of
pate in and benefit from virtually all
Development to describe the planning
concern for disabled people.
aspects of community life.
process and identify the costs
A recent study, called Barrier Free
A useful description of the barrier
involved in building barrier free
Communities, may help to fill this
free design concept comes from the
communities.
awareness gap. For the first time, the
report: As the barrier free design
entire planning process has been
movement has developed over the
Why are so many communities,
thought through and documented, and
years, accessibility has most often
particularly newly-built ones, still in-
a model of the design process neces-
come to mean additions of ramps,
accessible to disabled people? To put
sary to generate communities that are
provision of curb cuts, wider doors
the problem in perspective, imagine if
accessible to all has been developed.
and other design features of buildings
all curbs were so high that only
The study has also produced a variety
and site design. As these elements
people 6'5" tall could step up them
of technical assistance materials to aid
have been provided in communities,
comfortably; that doors to public
others in creating barrier free envi-
however, new needs have surfaced,
buildings were so heavy only profes-
ronments.
and accessibility has come to mean
sional athletes could open them; that
The contractor for the study is
much more than that. For example, to
parking spaces were only wide
Peoples Housing, Inc., an architec-
the disabled person, it is not enough
enough to park motorcyles; and that
tural, planning, and research group
to have an accessible building if that
the interiors of all houses were de-
located in Topanga, California. The
building is located in a place that is
signed for easy mobility only for per-
major planning concepts that they de-
difficult to reach, is unsafe, or is not
sons who were 5' tall and extremely
veloped and the work products
the kind of place that he needs. And,
slender-all others had to live in spe-
created to assist planners, architects,
access to facilities in a community is
cial institutions. The obvious answer
and developers, as well as students
not much use if one cannot be mobile
to the lack of accessibility to disabled
and other researchers, should be of
enough to reach those facilities. 1
people is the failure to design prop-
widespread interest. The published
Thus, community-wide barrier free
erly for their needs.
materials should be available in the
design goes beyond simply providing
While elderly and disabled people
Summer of 1978 and will be in the
accessibility to particular areas or
face very real obstacles in their efforts
public domain through the U.S. Gov-
facilities and considers the ability of
to find housing, to move about, and
ernment Printing Office at nominal
all people to perform ordinary living
to participate in normal community
cost. What follows here is a brief
activities. It is a process, and how
life, these restrictions are seldom
overview of the study and some ob-
one goes about that process plays an
created on purpose. Few designers
servations on its relevance.
important role in the success of its
have been trained to consider accessi-
implementation.
bility needs, and thus people who
What Is Community-Wide Barrier
make decisions in the development of
Free Design?
Conceptual Framework
a community have little information
Barrier free or accessible design re-
Because the study involved how
about the specific needs of older and
lates the built environment to the
land is developed, it deals with the
10
AMERICAN REHABILITATION
basic activities of community de-
and usability of all community
sible, facilities should support use by
velopment, such as initial program-
facilities.
persons with disabilities by eliminat-
ing, land use planning, site design,
Provision relates to the inclusion of
ing hazards and obstacles, and mod-
building entries, communications,
accessible and usable facilities that
ifying buildings and sites, as neces-
transportation, and marketing. It adds
are crucial for independent living.
sary, to permit their use by people
important new information to our
These include housing, employment
with reach, stamina, and sensory lim-
basic understanding of how to de-
opportunities, recreational programs,
itations.
velop barrier free communities, par-
and community services.
ticularly in the areas of programing,
People with disabilities often have
Methodology
land use planning, and site design.
limited mobility or stamina. Prox-
Two neighborhoods, within two of
For example, it is at the initial or pro-
imity acknowledges that "the func-
the HUD-sponsored new com-
graming stage of development that
tional distance between places must
munities, were selected as the foci
decisions are made concerning what
be close, either physically through
of research. Each study area was
kind of community is to be built and
distance, or functionally through
in an early stage of development, and
what values are to be demonstrated
means of communication and trans-
during the course of the study, each
through its physical setting and in-
portation. When applied to land
was planned or replanned to be barrier
stitutions. These basic decisions
use planning, for example, these con-
free. The two communities are Harbi-
either allow or preclude many barrier
siderations result in concepts such as
son, planned for approximately
free opportunities.
mixed-use districts, where commer-
24,000 people 8 miles northwest of
Land use planning involves such
cial, recreational, residential, and oc-
Columbia, South Carolina, and St.
land use controls as zoning and co-
cupational uses can be in close rela-
Charles, Maryland, located 25 miles
venant restrictions and the degree to
tion to each other.
southeast of Washington, D.C. and
which they permit the most appro-
Connection means that it is possible
planned for close to 80,000 people..
priate assignments of uses to different
to travel from one place to another.
Both communities have been under-
parts of the community. Such controls
Implications of this principle for land
way for several years, and between
may require change in order to permit
use planning relate to the conveni-
them presently house more than
mixed uses and mixed housing types
ence, safety, and basic ability to move
10,000 people.
in a barrier free community.
around the community at will. An
The research itself consisted of four
Site design involves the placement
example is pedestrian paths. To be
stages: 1) programing; 2) orientation
of particular physical facilities, as
accessible, origins must be connected
sessions and design workshops; 3) de-
well as the interrelations between
with destinations, without barriers
sign process; and 4) impact assess-
vehicular and pedestrian circulation
such as steps or steeply-sloping areas.
ment. Programing included early vis-
systems. For example, housing for el-
Normalization means that the op-
its to the communities and discussions
derly or disabled people can be
portunities for independent living for
with planning and development
planned near community commercial
disabled and elderly people are simi-
teams, as well as local civic leaders
or recreational facilities. This allows
lar to those for the rest of the popula-
and officials, to delineate the precise
those with limited mobility to have
tion. Some implications of this prin-
scope of the planning and design
more independence by reducing the
ciple are the development of
effort.
need for walking or wheeling great
noninstitutional forms of housing
Orientation sessions and design
distances or for transferring in and out
such as group homes, congregate
workshops followed. Many of the
of vehicles. Similarly, such facilities
facilities, and accessible housing
same people participated in the sen-
as transit stops, parking, and social
units, as well as avoiding concentra-
sitization sessions conducted in each
gathering places can be more conve-
tion or "ghettoization" of disabled
community. This technique called for
niently located.
and elderly people by integrating
participants to assume various handi-
Five principles of accessibility
these facilities into the community.
caps for a day-long exercise and,
shape and unify the study: provision
Implementation of these concepts may
under the supervision of the research-
of appropriate facilities; proximity of
involve special uses in residential
ers, to take part in a planned program
related uses; connection of commu-
areas and flexible land use controls.
of visits to local community places.
nity elements; normalization through
The fifth principle, usability,
Participants encountered first hand the
common and similar opportunities;
means that to the greatest extent pos-
physical barriers and frustrations that
11
disabled people face every day. De-
larly, changes may be required to
ners should find this information par-
sign workshops helped to incorporate
permit home industries, which allow
ticularly useful. Detailed estimates of
these experiences with existing plans
people who are restricted in mobility
the costs of making the two case-
into a rethinking process where prob-
to participate in the work force by
study communities accessible are
lems were discussed in detail with
manufacturing or providing small-
included.
new community staff.
scale services in their homes.
This appendix also contains an
The design process consisted of de-
The chapter on site design is the
analysis and recommendations for
veloping solutions to design prob-
'most detailed and contains sections
marketing the concept of accessibil-
lems, including preparation of con-
on pathways, interface between
ity. Many sensitive issues involved in
struction drawings of typical design
pedestrian and vehicular circulation
alerting the public to the existence
elements which were then used to ob-
systems; parking and passenger load-
and advantages of barrier free design
tain cost estimates from local cost es-
ing; social meeting places; recreation
features are addressed, such as how to
timators. These estimates, along with
opportunities; residential areas; and
advertise without giving the impres-
a marketing analysis, were then used
signs and street furniture. Each sec-
sion that the community is just for el-
for the impact assessment phase to
tion is further broken down into its
derly or disabled people. A proposal
develop projected costs and other
more basic elements.
for evaluating the effectiveness of
issues.
An outline of the actual planning
barrier free design is also included.
process is also contained in this vol-
Appendix Two contains an Acces-
Products
ume. It describes what must be done
sibility Checklist, for architects,
This study has resulted in a. variety
by whom and at what point in the
planners and developers. The check-
of products which should be very use-
planning process. This outline makes
list is a detailed working document in-
ful to those attempting to design
clear that the process of developing
tended for use in actual design, re-
communities that are accessible to all
barrier free communities involves a
view of designs, and inspection of
people. The documents consist of a
variety of people and organizations.
sites buildings.
main report, with findings and design
Coordination must occur between de-
Appendix Three, entitled "Living
guidelines, and three appendices
velopers and builders, local govern-
with A Disability-An Empathic Ap-
which deal with the more technical
ments, and advocacy and social serv-
proach Toward Understanding En-
materials related to details of site de-
ice-organizations. Local codes and
vironmental Barriers, presents a
sign and costs, an accessibility
zone requirements must be ascer-
method for sensitizing decisionmakers
checklist, and guidelines for conduct-
tained, and relations should be estab-
to the need for removal and elimina-
ing sensitization sessions.
lished wherever possible with organi-
tion of architectural barriers, as well
The main volume presents findings.
zations which administer appropriate
as a description of how that method
A chapter is directed to each major
service delivery programs. Some
was used in the two case-study com-
community development activity,
examples of groups to be involved are
munities. It can be used by any group
and, within the chapter, each element
commissions on aging, health plan-
wishing to go through the experience.
appropriate to that part of the process
ning agencies, planning commissions,
It is prepared as a pamphlet, fully il-
is addressed in terms of "issues" and
transportation authorities, and school
lustrated, and includes all necessary
"guidelines. Each concept and de-
boards, as well as voluntary agencies,
details for conducting a sensitization
sign element is fully illustrated with
such as church and local advocacy
program.
drawings and photographs.
groups. Planning and process costs
For example, the chapter on land
are also summarized.
Costs
use planning covers land use controls
Appendix One is entitled,
Initially, the imposition of any new
and land use assignments. Each of
"Sourcebook of Barrier-Free Site De-
design requirement will entail some
these topics is further broken down
sign Details and Their Costs, Market-
costs. Thereafter, such a requirement
into its components, and problems
ing and Evaluation. It presents de-
becomes simply a normal cost of de-
and examples are discussed. As an il-
tailed cost estimates for common de-
sign. The objective of the cost analy-
lustration, existing land use controls
sign elements used to make a commu-
sis portion of this study wás to begin
may require change in order not to
nity accessible and provides typical
to assess the nature and amounts of
limit options to provide alternative
construction drawings for each of
costs that would be over and above
housing, such as group homes. Simi-
those elements. Developers and plan-
"normal" costs to a developer at-
12
tempting for the first time to build a
half of this amount. Remaining costs
places; recreational opportunities;
barrier free project. Since the concept
were primarily accounted for by addi-
residential areas; signs and street fur-
was to identify all such costs, the re-
tional staff time spent learning about
niture, directional information, and
searchers looked at planning costs as
the planning process and community
lighting. Separate costs were also de-
well as actual development costs
involvement meetings. In the future,
veloped for public transportation and
attributable to barrier free design
the former should be resolved as pro-
communications systems.4
elements.
fessional education improves, and the
Total additional costs to provide
The assumption underlying the
latter will be eliminated as general
the minimum requirements of barrier
analysis of planning costs was that
knowledge of and standards for this
free design in both Harbison and St.
until such time as architects and plan-
type of design become more wide-
Charles were similar. The approxi-
ners are provided training in their pro-
spread. Thus, when architects and
mately $120,000 required for Harbi-
fessional schools in concepts of bar-
planners become familiar with barrier
son represents 2 percent of the $6 mil-
rier free design, a developer might
free planning, and it becomes com-
lion total development cost for the
have to provide the necessary train-
mon practice, any such "planning
study area. The approximately
ing, perhaps including professional
costs" should be eliminated.
$142,000 required for St. Charles is
assistance, to educate his staff.
The attempt to compute develop-
about 3 percent of a $5 million total
Planning costs included not only all
mental costs involved a special simu-
development cost.
developer staff time required, but also
lation exercise. As such, the costs in-
Initial design decisions made by the
that of the research team. Costs in-
curred are not necessarily those that
developers for each project, as a
cluded salary and overhead. The fig-
would occur where barrier free re-
whole, significantly affected later
ures included costs of putting on the
quirements are part of an integrated
costs of providing accessibility. For
sensitization sessions, time spent in
development design. These costs were
example, about 26 percent of the cost
meetings, and work involved in de-
assessed on three levels, in order to
to make Harbison minimally accessi-
sign and redesign of planning ele-
provide a range of options: minimum,
ble relates to the need for an addi-
ments. One problem with this analysis
preferred, and ideal. The minimum
tional pathway system. A separate
of planning costs is that the research-
level represents the researchers'
system is required because of the
ers themselves, rather than the de-
judgement of the minimum type, size,
original planning decision not to have
veloper's staffs, did much of the
quality or quantity of elements which
sidewalks along streets. St. Charles,
actual planning work. Also, the tech-
would allow elderly and handicapped
while providing sidewalks, made an
nical assistance materials which were
people to get to and use all com-
original decision not to have street
developed from this work should
munity facilities in their neighbor-
lighting, in keeping with its rural
facilitate the work of others going
hoods, without limiting their safety or
character. The addition of such light-
through a similar process. As a result,
security, or significantly decreasing
ing,5 however, is the major cost fac-
the researchers were forced to esti-
the convenience of use. The preferred
tor cited. Thus, if each community
mate planning costs, given their abil-
condition of barrier free development
had planned all along for a pedestrian
ity to analyze actual figures that
includes the minimum priority ele-
system with sidewalks along all
might be applicable.
ments in greater quantity or of better
streets, and a complete lighting sys-
Their estimates were that between
quality, as well as additional pre-
tem, these costs for accessibility
$7,700 and $9,400 would be needed
ferred elements which offer added
would not have been required.
to replicate the planning process.
convenience for accessibility. The
The other major cost for minimum
These estimates excluded a compo-
ideal condition of barrier free de-
accessibility, in each case represent-
nent for evaluation and included
velopment includes provision of eve-
ing 25-30% of the total, was for pub-
costs of full technical assistance from
rything helpful to the point where
lic transportation. The community
qualified consultants for orientation,
accessibility for the handicapped is
development costs for public transpor-
programing, and review of plans.
equal to able-bodied people in a con-
tation in both Harbison and St.
The researchers indicated that initial
ventionally developed community.³
Charles include transit stops and
planning costs will be roughly the
Development costs were estimated
transit vehicles for a mini-tram and
same, regardless of project size.
for each of the following areas: path-
demand-response system. If public
The cost of using outside profes-
ways; pedestrian-vehicular interface;
transportation were furnished by an
sional assistance took up more than
parking and loading; social meeting
areawide transit authority, the acces-
13
sibility requirements would have been
design is considered in the initial de-
disabled are more handicapped by bad
substantially reduced.
velopment phase, there should be no
design than the able-bodied. Good
Thus, even using the researcher's
additional cost for providing curb cuts
initial planning can allow for or pro-
figures, by adjusting for costs specif-
or ramps, crosswalks and pedestrian
vide most of the elements needed by
ically attributable to sidewalks and
lane markers, and there may even be
elderly and disabled people. They are
transportation in Harbison, and light-
cost savings by using less expensive
part of any well-planned community.
ing and transportation in St. Charles,
curb designs.
the additional development costs for
Obviously, there are limitations in
Summary And Conclusions
barrier free design are reduced to
the study's cost analysis as an effort
The purpose of the research project
about 1 percent of total costs.
to isolate costs specifically attributa-
was to identify and describe the proc-
In addition to the costs already
ble to barrier free design elements.
ess of developing barrier free com-
noted for sidewalks, lighting and
Considerable judgement was involved
munities and also to try to assess pos-
transportation, costs were attributed
in determining design elements neces-
sible costs involved. The first of these
to other items that seemingly would
sary for even the minimum level of
objectives has been fulfilled. The
be part of any good design: a need to
accessibility. For example, lighting
study provides a model, along with
provide ramps or other physical de-
and sidewalks improve safety and
technical assistance materials appro-
sign elements where pedestrian paths
convenience, but are not absolutely
priate for each stage of the process
have abrupt or severe changes of
necessary to provide basic accessibil-
from concept and sensitization
grade; additional per-unit costs for
ity. Thus, while the study presents a
through design and implementation.
larger parking spaces for the disabled
comprehensive evaluation of design
The concept of barrier free design has
and for appropriate signs; access to
elements necessary to provide an ac-
been expanded from simply assuring
recreational opportunities; and oné
cessible, safe, and convenient commu-
minimal accessibility, through provi-
piece of accessible play equipment at
nity, this attempt to categorize the
sion of ramps, curb cuts, and wider
each children's play area; and appro-
quality of design requirements is, of
doors, to provision of a process to
priate signs throughout the commu-
necessity, somewhat subjective and
achieve a comprehensive view of
nity, to meet the needs of the blind.
also reflects the lack of any current
community accessibility for everyone.
Even these items should not-be cost
concensus on applicable standards.
The elements of accessibility have
significant where there is careful
A related limitation of the analysis
been defined, and these in turn have
planning at the initial stages of de-
of development costs is that these
been carefully examined with issues
velopment. For example, better initial
costs cannot be wholly assigned to
and guidelines presented for each
location and grading of pathways
barrier free design considerations.
element.
should reduce the need to compensate
Rather, they represent the additional
While the process is enormously
for severe grade changes. Parking
costs that would be required to make
complicated in terms of the number of
spaces located at entry points will not
two specific developments minimally
details and skills required, it is con-
always need to be larger, and al-
accessible after important initial pro-
ceptually simple. The products of this
though it may be preferrable to have
graming decisions, not reflective of
study can be used by others to achieve
signs at eye level to drivers, they can
barrier free design requirements, had
an understanding of barrier free de-
also be painted on the ground with
already been made. While they do
sign requirements. Such requirements
regular street markings. Swimming
suggest additional costs for develop-
are simply part of good planning,
pools can have ramps instead of, or in
ers of certain conventional projects,
planning that takes into consideration
addition to, steps, and spectator seat-
they do not prove that similar de-
the physical needs of all people,
ing areas when carefully planned can
velopments conceived from the be-
whether young or old, physically fit
normally accomodate the disabled.
ginning as barrier free developments
or temporarily or permanently dis-
Where children's play areas are al-
would necessarily be more costly.
abled. This study confirmed this fact.
ready accessible, handicapped chil-
Plainly stated, it is hard to separate
As part of good design, there seem to
dren can generally adapt to regular
out costs attributable specifically to
be few, if any, costs that are specif-
equipment, although play facilities
barrier free design elements because
ically incurred to meet accessibility
planned specifically for the disabled
most of these elements represent sim-
needs.
can be just as much fun for all the
ply good design. Everyone benefits
The benefits of barrier free de-
children. Finally, when barrier free
from good design, but the elderly and
velopment are clear: They allow all
14
people to participate as fully as possi-
cessfully developed projects which
placement of community facilities,
ble in the life of their community.
are accepted and eventually demanded
and appropriate locations for special
Planning for accessible communities
by the buying public.
types of housing. Whether the project
and, in particular, providing inde-
To the extent that barrier free re-
involves a completely new commu-
pendent housing alternatives to in-
quirements become more widespread,
nity or inner city redevelopment and
stitutionalization, enables the elderly
they will eliminate this factor from
rehabilitation attention to accessibility
and disabled to stay in their com-
competitive pricing. Thus, one way to
requirements can help to create a bet-
munities and to participate. The posi-
encourage more barrier free develop-
ter environment for everyone.
tive results from such integration are
ment is for state and local govern-
Barrier free design is simply good
both social and economic. Employed
ments to adopt development codes
design. We know how to do it. We
persons support their community
which not only encourage but require
now need to see that it is done!
through taxes and other activities.
this factor as part of the necessary de-
Those who are involved with their
sign considerations. Many state and
community help give it a sense of
local governments are already ahead
Ms. Hillard is Director of Policy,
place and commitment, reducing
of the federal government in setting
Planning and Research for the Office
apathy and crime.
guidelines and standards for accessi-
of Independent Living for the Dis-
The study also highlights the need
bility; California, Massachusetts,
abled, U.S. Department of Housing
to develop widespread expertise on
New Jersey, North Carolina, and
and Urban Development. The opin-
such concepts among architects and
Ohio are examples. Prince Georges
ions expressed in this paper are her
planners. Development of college and
County, Maryland, recently passed a
own and do not necessarily reflect
graduate curriculums that include bar-
model building code which estab-
those of HUD or HEW.
rier free concepts are needed, as well
lishes different levels of accessibility.
Notes and References
as development of positive awareness
Cites like Berkeley, California
1) Barrier Free Communities,
through technical assistance ac-
Champaign and Carbondale, Illinois,
Peoples Housing, Inc., 1978.
tivities, such as workshops, articles,
have made meaningful strides in mak-
2) Ibid.
and reports on new developments,
ing their cities more accessible.
3) Ibid. Appendix I, "Sourcebook
techniques, and approaches, including
HUD has a variety of programs
of Barrier Free Site Design Details
widespread distribution of technical
which can be useful in these efforts.
and Their Costs, Marketing and
assistance materials, such as the
Community Development Block
Evaluation."
prodúcts of this study.
Grant funds can be used for many
4) The cost of accessibility fea-
Developers and builders must be
community development activities in-
tures in buildings, including
convinced not simply that barrier free
cluding the removal of architectural
publicly-used facilities, places of
design is "good design,' but that it
barriers. Other programs, such as the
employment, and a percentage of the
will significantly increase the markets
Section 202 Direct Loan Program for
various housing types, was not in-
available to them. 6 To the extent that
Housing the Elderly and Handicapped
cluded in determining the differential
extra factors are involved, they can
and the Section 8 Housing Assistance
cost of barrier free elements because
help provide a more competitive
Payments Program, can be used to
the study focused on site conditions
product. "Good" planning or de-
provide a variety of types of housing
rather than individual buildings.
velopment for a builder or developer,
assistance.
5) Lighting was judged to be a
however, is often considered in the
A final point concerns the implica-
necessary barrier free design element
context of development costs relative
tions of barrier free design research
to allow easy identification of hazards
to the sales prices of lots and houses.
for existing development. HUD, for
and directional and informational
Features that are perceived to increase
one, is putting increasing emphasis on
signs, as well as to provide for secu-
costs and thereby make a develop-
redeveloping inner-city neighbor-
rity at all community facilities and
ment less competitive are not particu-
hoods as a strategy for producing
along paths of travel throughout the
larly attractive to a developer without
housing. In cases where a neighbor-
community.
offsetting advantages. In this regard,
hood or city area is undergoing rede-
6) The elderly and handicapped
studies such as this one are only be-
velopment, these same concepts and
population can conservatively be es-
ginning to break new ground. The
guidelines should be helpful in deter-
timated at over 20 percent of the cur-
proof of success will come with suc-
mining transportation linkages,
rent population.
15
The Illinois Approach
sponsible to DVR to help us meet
their needs and provide feedback.
James S. Jeffers
This give-and-take process provides
the constant evaluation and monitor-
ing our clients and the agency require
The word independence is
Urbana and Southern Illinois Univer-
to work toward the total rehabilitation
united to the ideas of dignity and vir-
sity at Carbondale. Again, support
concept.
tue; the word dependence, to the
was provided by consumer-based
Activities within our VR agency
ideas of inferiority and corruption.
organizations-separate and distinct
include:
Jeremy Bentham
activities from the state vocational re-
1. D.I.A.L.-The Disabled Indi-
habilitation agency.
viduals Assistance Line is a call col-
This thought must have been in the
Illinois is using the "total rehabili-
lect system whereby persons can call
minds of those who put in motion the
tation" approach. We are attempting
the Chicago-based D.I.A.L. office
wheels toward independent living.
to incorporate the Independent Living
and obtain information on agencies
The increased move toward imple-
Rehabilitation (ILR) initiatives ad-
(public and private) which serve
menting this concept was spurred by
junct with the state service delivery
handicapped persons. The D.I.A.L.
such actions as the Comprehensive
system. From the perspective of the
office also houses a resource library
Needs Study, the Rehabilitation Act
Illinois DVR, it is apparent that ILR
of information on services, agency
of 1973, and the expansion of the vo-
is too important a service to ignore or
contacts, DVR programs, and legal
cational emphasis in rehabilitation to
to "fit" into the traditional extended
information affecting disabled
enhance the ideas of virtue and
evaluation category; a discrete VR
persons.
dignity.
program initiative is clearly the pre-
2. Client Assistance Project
The independent living concept has
ferred option with the basic idea that
(CAP)-This program, funded by a
taken a sort of "of the people, by the
consumerism can change things
grant from RSA, insures consumer
people, and for the people''
within instead of outside.
input into DVR programs and
approach-much needed input from
Whereas many states may use one,
policies. The mission of the Client
consumers is being obtained for con-
or a few, of the projects described be-
Assistance Project is to assist DVR
sumers. The move toward serving the
low, Illinois is availing itself of all
clients in their rehabilitation process.
severely disabled has enabled them to
these sources of consumer, public,
It is a high priority to hire qualified
voice their concerns, needs, and,
and inter-agency input. We have
ex-DVR clients for staff positions.
more importantly, their choices.
broadened the Illinois VR mission so
The program goals are to: 1) provide
Historically, the struggle for inde-
that we are not just focusing on
information to past, current and po-
pendent living has been approached
employment, but on all areas related
tential DVR clients; 2) assist clients
with the use of separate consumer-
to the total participation of disabled
in the DVR appeals process; 3) serve
based organizations. Needs are iden-
persons in society, individualizing the
as a resource to clients and coun-
tified and ultimately addressed with
rehabilitation concept and processes.
selors; and 4) identify gaps in services
the help of fellow consumers iden-
Recently we have established posi-
that exist in the VR system. The proj-
tified by their particular organization
tions within the agency for an acces-
ect will be located in Springfield, but
or disability. -Such is the case in
sibility coordinator and a housing
will eventually serve clients and
California's Center for Independent
specialist. From the perspective of
counselors state-wide.
Living and Massachusetts' Boston
total rehabilitation, we are seeking to
3. Consumer Advisory Coun-
Center for Independent Living. Cam-
advise property owners on their legal
cils-Each of the five DVR regions
pus services began with the disabled
and moral responsibilities with re-
has a Regional Consumer Advisory
students working in their spare time
spect to accessibility of their build-
Council. The mission of these coun-
toward alleviating the architectural
ings and facilities.
cils is to advise DVR regional staff on
and social barriers they encountered.
The DVR philosophy is that we
programs and procedures within
Illinois is proud to have two of its
view clients as active, knowledgeable
DVR. These councils also are con-
largest state universities totally acces-
and responsible people. We are re-
cerned with ILR in each region, in-
sible to its handicapped students-the
sponsible to our clients to provide the
University of Illinois at Champaign-
best services possible; they are re-
(Continued on Cover III.)
16
AMERICAN REHABILITATION
Second Generation: New England
John V. Driscoll, Ph.D, Bruce Marquis,
Paul J. Corcoran, M.D., and Frederick A. Fay, Ph.D.
Independent living programs are
dedicated assistance of many rehabili-
For several months, they met reg-
riding a crest of popularity in the field
tation professionals who are distres-
ularly, brainstorming their idea, map-
of health and rehabilitation, to serve
sed by the limited futures of those for
ping ways to make it reality, and
the needs of people who have very
whom the promise of America is visi-
studying similar efforts in Berkeley,
severe physical disabilities. More
ble only on a flickering TV screen in
Champaign, and Houston. Their goal
than 15 states are developing such
a back bedroom or hospital ward.
was a base of operations-a program
service components, and the Rehabili-
rather than a facility-for disabled
tation Services Administration is
Boston Center For
people to bridge the gap between total
being urged to expand its services to
Independent Living
dependence on an institution and
include independent living programs.
Following the initiative of inde-
independent living. BCIL envisioned
This paper looks at three aspects of
pendent living programs in Cham-
a consumer-run, self-help commu-
existing or developing independent
paign, Illinois; Berkeley; and Hous-
nity, integrated with the able-bodied,
living programs in New England.
ton; the project to establish a Boston
where severely disabled people could
First, the Boston Center for Inde-
Center for Independent Living (BCIL)
develop independence.
pendent Living is highlighted as the
was conceived in January 1974 and
Enlisting the aid of state agencies
forerunner of several programs. Sec-
opened its doors that September.
and Boston University (BU), the three
ond, activities are summorized by the
BCIL had its roots not only in the
founders spent the 1974 spring and
New England Spinal Cord Injury
anger of disabled people "incarcer-
summer gathering a board of direc-
Foundation to facilitate development
ated" in public and private institu-
tors, arranging a contract with
of programs in areas where none
tions, but also in the frustration of re-
Medicaid, and making final arrange-
exist. Third, a Tufts Research and
habilitation professionals who found
ments with BU. In September, the
Training Center (RT-7) research proj-
the noninstitutional community inac-
first resident rolled into modified
ect is described which integrates in-
cessible to clients and patients follow-
quarters in BU's Theology building,
dependent living training into the
ing rehabilitation. All three cofoun-
and BCIL was underway. In the 4
medical rehabilitation process rather
ders had firsthand knowledge of the
years since its founding, BCIL and
than tacking it onto the end.
complexity of integrating people with
the roughly 70 persons who have par-
Cooperative efforts by rehabilita-
severe disabilities into the larger
ticipated have demonstrated that
tion professionals and disabled
community. Paul J. Corcoran, M.D.,
independent living is a realistic and
consumers demonstrate that
now RT-7 Project Director, contrib-
preferred goal for many severely dis-
community-based, independent living
uted his knowledge of medically ac-
abled persons.
is a medically acceptable, cost-
ceptable alternative living situations
Today, BCIL is a small, nonprofit
effective, and rewarding alternative to
and links to university support. Fred-
corporation coordinating three sepa-
long term, institutional care.
erick A. Fay, Ph.D., now RT-7 Re-
rate phases of independence that have
The groundswell of interest is the
search and Training Director and a
evolved over the years:
result of determined efforts by dis-
quadriplegic psychologist, brought
Transitional living. Providing the
abled people who have demonstrated
energy and enthusiasm from firsthand
first, basic steps in training social and
a truly pioneering spirit in breaking
knowledge of other centers. Rehabili-
physical skills, transitional living
away from institutions-sometimes in
tation counselor Robert McHugh,
began in modified dormitories at BU.
defiance of health professionals. In so
with his intimate knowledge of the
As BCIL attracted disabled persons,
doing, they have learned to care for
state vocational rehabilitation system,
not necessarily interested in a full-
themselves, pursue educations, and
was a link to cooperation and funding
time education, this concept was ex-
vie in the job market. They have the
between agencies and the idea.
panded, and in March 1977, the first
AMERICAN REHABILITATION
17
residents moved into a second transi-
tures, goals, and residents influence
Although consumer involvement is
tional facility in Brookline Village,
the particular character of any organi-
viewed as a key element in programs,
an apartment complex in a Boston
zation. However, at least two
too many organizations await the de-
suburb.
philosophic tenets provide common
velopment without activity on their
Cluster Housing. For those who
links between BCIL and other centers:
part. When it doesn't develop, a vac-
have mastered independent living
1) People with disabilities plan and
uum is created. The New England
skills, cluster housing offers greater
implement the decisions that affect
Spinal Cord Injury Foundation sub-
independence. Located in East Bos-
their lives; 2) the programs help
scribes to consumer involvement as
ton, this is an apartment building with
people with disabilities live independ-
paramount, but it also believes that a
several apartments modified for hand-
ently in the community rather than
partnership between consumers and
icapped people, with a pool of per-
dependently in institutions.
the agency can effectively bridge the
sonal care assistants (PCAs) and a
gap between dependent and demean-
nighttime attendant.
New England Spinal
ing living and independent living.
Cord Foundation
Independent living. As facilities
There are three independent living
and funding for attendants became
Nowhere is the issue of independ-
programs in New England, the BCIL
available to the greater Boston area,
ent living programs more relevant
(already described), the Bangor Cen-
people began moving to accessible
than in the area of spinal cord injury
ter for Independent Living, and the
apartments, usually shared with a
and the systems that serve people who
Worchester Area Transitional Hous-
PCA, from which they now conduct
experience such trauma. Although the
ing program. They serve Greater Bos-
lives as students and professionals.
acute and rehabilitative stages are
ton, the State of Maine, and Worces-
Who are BCIL residents? They are,
dramatic and well attended, the mean
ter County, Massachusetts. In addi-
for the most part, young, highly
number of years lived by people who
tion, the Stravros Foundation, based
motivated people from the Greater
survive these injuries is 33; thus, the
in Amherst, Massachusetts, offers
Boston area. They come to BCIL with
need to enhance independent living
most IL services, except attendant
a variety of physical disabilities rang-
opportunities is becoming more criti-
care. It focuses on peer counseling,
ing from muscular dystrophy to spinal
cal. Add to this, the increased inci-
resource assistance, and housing. A
cord injury. Their responses to the
dence of high-level spinal cord in-
fifth model is developing in
opportunities offered by BCIL are en-
juries and the system is faced with a
Bridgeport, Connecticut, under the
thusiastic. As Walter Zarnowski, the
larger number of quadriplegics than
auspices of the Southern Connecticut
first resident, put it: "The Center for
ever before.
Quadriplegia Association which has
Independent Living, has obliterated
For this reason and the fact that in-
planned a facility to house 12 quad-
the lock and knocked the cage door
dependent living programs have been
riplegics in a group setting. Funds are
off its hinges. It has shown me that
slow to develop, the New England
being raised to support its construc-
there is a fundamental difference be-
Spinal Cord Injury Foundation began
tion and program development.
tween merely existing and living for
a regional approach to the need during
Because of these programs, New
something brighter; the challenge of
1977. Its strategy supports existing
England ranks second to California in
being individually responsible for my
independent living programs (centers
independent living services.
own actions. This is what I was pre-
for independent living) and initiates
Nevertheless New Hampshire, Rhode
vented from doing before I came to
new programs, where necessary.
Island, Vermont, as well as the
BCIL.
In addition to spinal cord injured
southeastern and northeastern portions
Two lessons stand out as important
people who can benefit from inde-
of Massachusetts are unserved. To
from the BCIL experience. First,
pendent living programs, people with
meet the need, the New England and
BCIL has shown that it is possible to
many other types of severe physical
Spinal Cord Injury Foundation has
develop a quality independent living
disabilities are served by them, such
been planning independent living
rehabilitation program in a short
as people with cerebral palsy, muscu-
programs in these areas.
period. Second, it is important to
lar dystrophy, multiple sclerosis, mul-
In addition to its expertise in
think through every step of the cen-
tiple amputees, and Friedrich's
applied research and planning, the
ter's development. No two centers are
Ataxia. Many of them are now in
Foundation gained a great deal of prac-
alike. Differing funding sources,
nursing homes, hospitals, or in de-
tical experience in the area last year
philosophies, organizational struc-
pendent home situations.
by providing 8 months of manage-
18
Regardless, the long-range outlook
is encouraging. The various inde-
pendent living programs in New Eng-
land and elsewhere have made out-
standing contributions in aiding those
with severe physical disabilities to
gain independent life styles. With
more money, additional models of
services, assistance with developing
adequate housing resources, and the
active involvement of consumers and
providers, barriers to independent liv-
ing can be surmounted.
Tufts Research and
Training Center
The increasing severity of physical
disabilities being seen in rehabilita-
One of the authors, Dr. Frederick Fay, negotiates a curb cut on way to Boston
tion centers and the consequential de-
Center for Independent Living.
velopment of independent living pro-
ment services to BCIL. A full-time
The advantages of the New Eng-
grams have led the staff of the Tufts
Director of Community Program-
land Spinal Cord Injury Foundation's
Rehabilitation Institute to focus more
ing, Bruce McHugh, was employed
management of these various efforts
sharply on some of the long-standing
in February 1978.
include a coordinated approach to
problems in medical rehabilitation
A threefold strategy was developed
common problems, sharing of staff,
and to develop plans to integrate in-
that would gain financial support for
close ties with the divisions of voca-
dependent living into the medical re-
staffing (In all instances, such support
tional rehabilitation, the view of an
habilitation process. A research proj-
has been provided by the state divi-
organization which has consumers in-
ect, begun this year with support from
sion of vocational rehabilitation);
volved at all levels of its operation,
the New England Regional Rehabilita-
create an advisory committee with
and expertise in managing independ-
tion Research and Training Center
representation from consumers and
ent living programs. In its efforts to
(RT-7), will examine the cost-
consumer groups, agency representa-
foster the idea of cooperation in the
effectiveness of providing independ-
tive rehabilitation professionals, and
area, the Foundation has assisted in
ent living training throughout the
other community leaders; and select a
strengthening the Massachusetts
medical rehabilitation process rather
model of services to best serve the
Interagency Committee on Independ-
than at the end of it.
needs of the people who live in the
ent Living and has served as a foun-
The first problem to be addressed
community and use any resources that
der of the Association of Independent
is the institutionalization of the medi-
already exist.
Living Executives.
cal rehabilitation process. The in-
In building the advisory commit-
Major problems that threaten the
crease in severity of disabilities
tees, the Foundation has focused on
development and expansion of pro-
means an increased amount of time
developing consumer leadership. The
grams are the lack of adequate fund-
spent living in institutions. Lengths of
long-range plan is to relinquish man-
ing for attendant services; inadequate
stay in acute hospitals and rehabilita-
agement when programs are operating
housing that is accessible and afford-
tion centers may extend to many
effectively and their advisory commit-
able; and financial disincentives for
months. Thousands of disabled people
tees are prepared to assume manage-
people who are disabled to seek work
spend additional months or years in
ment responsibility. Three of the five
that is fitted to their needs, interests,
nursing homes or chronic hospitals.
advisory committees under develop-
and abilities. Coordinated action at
The harmful effects of prolonged
ment are chaired by people who have
national, state, and community levels
institutional living have become well
severe physical disabilities and two
can overcome these impediments to
known. Patients are encouraged to
by consumers.
expansion.
follow instructions, rules, and regula-
19
daily basis, either by the patient re-
turning to the Institute or by provid-
ing daily services in the apartment.
Patients will pay their own rent, and
professional services will be reim
bursed. at the home care or outpatient
rates. The research component of the
project will measure the effect on
length of hospital stays, total costs of
rehabilitation training, and improve-
ment of independent living skills. The
functional assessment scales in use
will be augmented to measure such
functional skills as outdoor mobility,
use of transportation vehicles, written
and verbal communication, manage-
ment of business and financial affairs,
social contacts, educational or voca-
tional activities, amount of time spent
up, amount of distance traveled, etc.
Another problem to be addressed is
the exclusive reliance on profession-
als in medical rehabilitation and the
barriers to consumer involvement
within rehabilitation centers. Because
of the high hourly and overhead costs
of professional therapy and nursing
BCIL member shows his specially equipped van which allows him the mobility
services, the health care system can
that he needs to function independently.
afford to provide only a few hours per
day of one-to-one services. Training
tions. Compliance is highly valued,
ronment of the institution can never
in the home is rarely feasible due to
and individualistic behavior is dis-
accurately simulate the real world to
the economies of group treatment and
couraged. The "good" patient is the
which the disabled person must re-
the costs of travel time; yet the home
person who respectfully follows in-
turn, and in which he or she must
is the setting where independent liv-
structions and does not disagree with
function independently. Added to
ing skills must be practiced and
the staff. On the other hand, the pa-
these problems is the rising cost of in-
"fine-tuned.' Frequently, success-
tient who constantly asks for a dime
stitutional care; currently a skilled
fully rehabilitated disabled people
for the pay phone, a postage stamp,
nursing home bed in the Boston area
take it upon themselves to train newly
or a pass to leave the institution on
-costs $25 to 40 per day; a. chronic or
disabled people. While often very ef-
personal business, tends to be treated
rehabilitation hospital bed is $100 per
fective, these efforts don't reach
as a nuisance or "manipulative."
day, and acute hospital rates are $200
every physically disabled person and
Patients do not make their own ap-
to 300 per day.
are not- available early in the rehabili-
pointments, keep their own medical
The Independent Living Project
tation process when the need may be
records, or administer their own
will promote the development of tran-
greatest. These ad hoc rehabilitation
medication. These responsibilities le-
sitional apartments within two blocks
efforts by disabled people or con-
gally are vested in the institutions.
of the Rehabilitation Institute, to
sumer organizations cannot be
Yet, on the day of discharge, the pa-
which patients can be discharged after
integrated with the professional re-
tient is expected to suddenly assume
a shorter-than-usual inpatient stay.
habilitation process. There is little
control of his own health care and life
Rehabilitation and independent living
opportunity for crossfertilization of
decisionmaking. The artificial envi-
services can still be provided on a
rehabilitation professionals and these
20
experienced disabled people. In fact,
grew out of the basic, traditional
and perfecting independent living
most rehabilitation professionals have
health care system and still tends to
skills.
limited, off-duty contact with suc-
be seen in terms of "units of service"
Like most new ideas, the project
cessful, independent physically dis-
given by a professional to a disabled
includes much that is old and famil-
abled people in social or community
person. Thus, it tends to be a one-way
iar. Maximal efforts will be made to
settings. As a result, the rehabilitation
process, in the same sense as an injec-
draw on the existing expertise and ex-
professional may tend to over-
tion or surgical operation. While
perience of other rehabilitation cen-
estimate the limitations of disabled
every good medical rehabilitation cen-
ters and the successful independent
people and be unaware of a large va-
ter places a heavy emphasis on patient
living programs in Boston and
riety of adaptive techniques and ar-
education, little use is made of sev-
Worcester.
rangements of home environment
eral well-known and powerful educa-
Patients need not originate from
which successful, physically disabled
tional tools, such as defined, measur-
within the Tufts-New England Medi-
people use.
able educational objectives; a speci-
cal Center: referrals will be welcomed
The Independent Living Project
fied training curriculum for each cat-
from any source. Project staff will
will measure the cost-effectiveness of
egory of disability; written training
work closely with the Massachusetts
consumer involvement in the rehabili-
materials, such as textbooks and
Interagency Committee on Independ-
tation process in the role of "Inde-
workbooks; practical laboratory ex-
ent Living, the Boston Housing Au-
pendent Living Trainers" (ILTs).
perience to try out new skills under
thority, and other groups who are
Procedures will be developed to iden-
supervision; and testing and certifica-
promoting transitional housing and
tify, recruit, screen, select, and train
tion to determine that patients actually
independent living in the Boston area.
successfully rehabilitated disabled
learn the new skills, knowledge, and
Liaison will continue to be main-
people to function as ILTs. Many
attitudes which are the goal of
tained with the successful Independ-
ILTs will have a full-time job or busy
rehabilitation.
ent Living Programs in Berkeley,
personal life, and will "moonlight"
The Independent Living Project
Houston, Columbus, and elsewhere.
parttime in their ILT role, for which
will measure the effectiveness and
In summary, just 4 years after the
they will be paid. The project will de-
costs of an educational model for re-
first planning meeting for the Boston
velop and define a working relation-
habilitation health care delivery.
Center for Independent Living, we
ship between ILTs and traditional
Separate curricula will be developed
find a variety of programs now de-
members of the rehabilitation team
for the common categories of disabil-
veloping. Rehabilitation providers
(nurses, therapists, social workers,
ity, such as spinal cord injury, ampu-
and several disabled consumers have
physicians, psychologists, etc.),
tation, arthritis, cerebral palsy, etc.
cooperatively established programs
which will allow each to learn from
There will be written educational ob-
that have enabled people to bridge the
the other. The legal, insurance, and
jectives which will be similar to the
gap between institutional dependency
regulatory aspects of the ILT role will
Individual Written Rehabilitation Plan
and community-based independence.
be investigated, and plans for quality
(IWRP) now in use in the VR system.
Initiatives by disabled people, the
control and accountability of their
Written teaching materials and
New England Spinal Cord Injury
work will be developed. Attempt will
audio-visual aids will be obtained or
Foundation, and Tufts Research and
be made to negotiate a pilot arrange-
produced. The staff will study how
Training Center are developing inde-
ment to reimburse for the services of
best to schedule and coordinate the
pendent living programs in previously
ILTs, through one or more of the
educational component with the tradi-
unserved areas.
third-party health insurance agencies
tional medical rehabilitation services.
which pay for health care. The costs
Optimum space and furnishings for
Dr. Driscoll serves with HEW Region
and effectiveness of the addition of
the rehabilitation education program
I. Mr. Marquist is a staff member of
ILTs to the rehabilitation team will be
will be determined and added to the
the New England Spinal Cord Foun-
compared with that of the traditional
Rehabilitation Institute. Independent
dation. Dr. Corcoran is a physician
medical rehabilitation approach.
Living Trainers (ILTs) will function
and Project Director of the Tufts
A third problem to be addressed is
as "lab instructors," and maximum
study described in this article and Dr.
the limitations of the medical
use will be made of the neighboring
Fay is the Research and Training Di-
framework in which rehabilitation
apartments and surrounding commu-
rector at Tufts Research and Training
services are delivered. Rehabilitation
nity as a "laboratory" for practicing
Center.
21
IL: In Massachusetts
(MRC). The rationale is that suitable
living arrangements can be an essen-
tial component of the vocational re-
Elmer C. Bartels
habilitation of severely disabled
people. Grants were provided to es-
Independent living, as a concept, is
veloped. The helper is called a per-
tablish the organizational structure
not new. However, the philosophy is
sonal care attendant (PCA); a Center
and program to the point that enough
now being applied to a population
for Independent Living (CIL) is usu-
people were in the program to obtain
which previously had not been
ally a facility where a number of dis-
the fee payment rate from Medicaid.
thought of in these terms, to the se-
abled people live independently
Just as in most other CIL develop-
verely physically handicapped adult.
within an organization and program
ments around the country, disabled
This new thrust has created a whole
structure to meet their needs; an Inde-
people were key contributors and
new set of forces in social thinking
pendent Living Program (ILP) de-
managers in starting and continuing
and the delivery of human services.
notes a program spanning many phys-
these programs.
The purpose of independent living is
ical locales, supporting people living
More recently, a new program has
to establish people in the community
in the community; Transitional Living
been funded on a pilot basis to pay for
through a supportive service network
(TL) is a program within one physical
PCA costs for employed, disabled
which improves the quality of life.
facility housing a group of people
people who, due to their employment
Examination of de-institutionaliza-
(this is most often the first step from
status and income, are not Medicaid
tion over the past 10 years reveals
institutional or acute hospital setting);
eligible. The program is administered
that people with mental illness and
Clustered living refers to a small
by MRC through the CIL's who have
mental retardation have been placed
group of 2 or 3 living in a group set-
expertise in running PCA programs.
effectively into independent living ar-
ting within the community; Commu-
Eligibility for this program is deter-
rangements in the community-at-
nity Living refers to one person living
mined on the basis of need for PCA
large. Basic support systems such as
in an apartment (or house) with PCA
services (2-5 hours per day, and a
halfway houses, community health
services. These terms are used in
night time attendant, if needed) and a
centers, and residential group homes
Massachusetts to reflect the state-of-
sliding scale for income. Under this
have been, and remain, the basic
the-art concerning independent living.
program, a person might receive an
building blocks of this effort. State
The main factor which has made
average of $4,500 in support if in-
funds, plus federal grant money, have
independent living a realistic option
come is less than $10,000 per year.
been used to support the community
in Massachusetts is a Medicaid fee
PCA subsidy is gradually decreased
development aspects of de-
rate under Title XIX of the Social Se-
as the income rises to $25,000 per
institutionalization. The results show
curity Act to pay for PCA's for
year at which point the person is
that this population is living inde-
Medicaid-eligible young people to
completely responsible for PCA
pendently, essentially in the commu-
live in transitional, clustered, or
payment.
nity, at a higher level of functioning,
community living settings. Two non-
In following the ILP development
that the support systems are helping
profit CIL's (Boston Center for Inde-
in Massachusetts, the greatest need at
people to achieve at a higher level of
pendent Living and Worcester Area
this point is accessible low and mod-
community involvement, and that
Transitional Housing) administer the
erate income housing and Section 8
state agencies can work together to
programs and serve as the fiscal con-
certificates for subsidized units. As
achieve a common goal.
duits for paying PCA's. The philos-
people prepare to leave transitional
The most recent thrust into inde-
ophy is that disabled people should
living and look for community living
pendent living involves severely phys-
interview, hire, fire, and pay their
opportunities, the lack of accessible
ically disabled young adults who,
own PCA's, thus making the PCA
and affordable apartments is proving
with the assistance of another person,
fully responsible to, and responsive
to be a crucial need. Housing money
can live independently in the commu-
to, the disabled person needing
within the Department of Community
nity. The unit of independence, then,
such services. Also of key importance
Affairs for housing for the handi-
becomes the disabled person plus the
to funding the CIL's has been innova-
capped is just now being applied to
helper. As part of this process, an en-
tion and expansion grants from Mas-
tirely new nomenclature has de-
sachusetts Rehabilitation Commission
(Continued on Cover III.)
22
AMERICAN REHABILITATION
Second Generation: West Coast
Bruce M. Brown
Before CIL ever became recognized
Department of Rehabilitation (DR)
Gaps And Continuities
as an "independent living program,"
and beneficiaries of Aid to Disabled
Where generations exist so do gaps
its founders experienced several years
and Medicaid.³ By carefully studying
which separate them and continuities
of increasing group activity and or-
and insistently using their entitle-
which link them. Independent living
ganization. No one knew what spe-
ments, with support of their DR coun-
(IL) organizations put a premium on
cific result this would lead to, much
selor, they were able to hire personal
independence. They are not willing to
less that a special, new kind of serv-
attendants, reimburse the University
work as shadows of any progenitor
ice organization was being created.
for a substantial part of their extra liv-
organization, regardless of the debt
These preparatory events took place
ing and medical costs, pay their edu-
they recognize or the appreciation
in a closely knit group of severely
cational expenses, and have a little
they feel. Each will create its own in-
disabled people on and near the Uni-
spending money left. By learning to
dividuality as a separate undertaking
versity of California campus. The
care for their own physical health and
by new people in a new setting. New
University, along with the California
being mentally motivated to do it,
groups are also conscious, however,
Department of Rehabilitation, spon-
they showed themselves physically
that they are part of a movement and
sored the group's coming into exist-
less delicate than anyone had
that they draw strength both from
ence, but they had only the most
imagined.
their more solidly established precur-
modest and indefinite expectations
By 1970 there were 12 Cowell resi-
sors and their contemporaries.
about what their help would produce..
dents, as well as 5 ex-resident stu-
Independent living for severely
dents living off campus on their own.
physically disabled people started in
Roots Of The Movement
At the end of the 1970 academic year,
California with the new kind of social
In 1962-63 two quadriplegic men,
success came to the wildly mad no-
organization and collective activity
Edward Roberts and John Hessler,
tion that disabled students could get a
that disabled people created in Ber-
were admitted to the University as
federal Office of Education grant and
keley over a period of about 10 years.
part of an experiment that would
become providers of official Univer-
Now the products of this activity are
allow them to live on campus, away
sity services to disabled students.
being transplanted or grown from
from their homes. This unprecedented
Thus, the UC Berkeley Physically
seed in at least 18 new California lo-
and risky step was based on their tak-
Disabled Students Program (PDSP)
cations.¹ The issues and questions we
ing campus residence in a carefully
came into being.
have identified for our study of the
controlled, medical setting at the
California ILP experience are, "What
Cowell Student Health Service Hospi-
A New Social Invention
does it take for success in a second
tal. After 2 years, they were joined by
Having no real precedents to guide
generation of ILPs?" and "What is
a third quadriplegic student, and in
or limit them, the designers of PDSP
success for ILPs?''2
the next year by five more equally
relied on their own experience. They
disabled persons.
built things into the program which
CIL Berkeley: The First
It was the "carefully controlled"
they had found they needed to make
The organization that stands in his-
aspect which most contributed to de-
life liveable and hopeful enough to be
tory as the only first generation
velopments that followed. Hospital
worth working and studying for. Get-
California IL program, Berkeley Cen-
regimen proved more of an incitement
ting financial and medical benefits to
ter for Independent Living, (CIL)
to change than a protection to the
survive on, finding dependable at-
went through an experience that can
project's beneficiaries. Disabled resi-
tendants through a referral system,
safely be termed unrepeatable, since
dents began acting together to control
getting power wheelchairs and keep-
by definition there can be only one
their lives, beginning in the hospital,
ing them in operation, having help in
first experience of a kind. So CIL's
then in other situations.
finding housing outside Cowell-
beginnings had several important fea-
The severely disabled people at
these were the basic PDSP compo-
tures that were unique.
Cowell were clients of the California
nents. Service program control by its
AMERICAN REHABILITATION
23
consumers was another key concept,
The new organization began with
Essentials For Success
made possible in, PDSP by the Cowell
loaned office space in the house
Project group's having brought the
When the Center went into opera-
where PDSP had its office near the
tion in 1972, it concentrated on those
grant to the University. One decision
campus. Its only assets were the
services considered indispensible to
they made shaped the program's
founders' spare time, a few volun-
independent survival for the severely
character significantly; they would
teers' labor, and an amazing record of
disabled: attendant/reader referral,
not establish another large group liv-
accomplishment since the Cowell
housing referral, transportation, fi-
ing facility off campus. Accessible,
project began. With no more than
nancial advocacy, and community
private, off-campus rental housing
this, the organizers boldly named
action/public advocacy. But it was
(with personal or shared attendants)
their new creation: "The Center for
not the services provided that made
was the chosen alternative to living at
Independent Living.
CIL a new social invention. It was the
Cowell.
This alternative was becoming an
The New Center
concept which CIL inherited from
PDSP of having such services in an
earlier and earlier choice of many
Independence from the University
integrated system, controlled by the
students who were being admitted to
and a completely new start in the
disabled themselves, and not tied to a
Cowell in steadily increasing num-
Berkeley community left CIL free to
group residence. These concepts re-
bers. The typical stay in hospital resi-
choose any form of organization and
main the essence of independent liv-
dence, which had been 6 years at the
any balance of politics and advocacy
ing programs for the severely disabled
beginning, by 1969 shortened to 1
in relation to direct services. Its first
in California.
year.
year's support was largely from an
RSA planning grant, which conferred
Lean Years
Going Off Campus
the freedom to plan, rather than de-
Despite the dramatic appeal of its
Seeing the unique services offered
manding immediate production of
accomplishments and leaders, the or-
to physically disabled students
services and results.
ganization was headed into financial
through the University in PDSP,
One of the first decisions was made
hard times. It started with $50,000 of
many nonstudent, disabled people in
when CIL found that young blind
RSA facilities planning money
Berkeley began to seek PDSP serv-
people in the University area wanted
granted on the basis of its striking
ices. Initially, the project took a re-
independence and mobility in ways
novelty and potential. But in an era
laxed attitude toward these "outsid-
similar to themselves and were will-
when money appropriated to HEW
ers," but the recurring thought of a
ing to join forces as partners. Blind
was being held back and stretched to
grant audit made project personnel in-
leaders and blind services were given
its limits, there would be 2 years be-
creasingly uncomfortable.
a guaranteed place from that time on
fore any more federal money came its
An off-campus organization was
and coalition became a policy.
way.
conceived as the logical solution. A
After several months of planning,
Survival was accomplished by piec-
growing number of severely disabled
CIL's proposal for an expanded sys-
ing together small amounts of city
UC alumni in Berkeley included many
tem of IL services was drawn up to
rent money, county client services
people with leadership and organiza-
provide: recruitment, training, and re-
payments, University money, and
tional abilities. This was also true of
ferral services to help make good at-
gifts. Staff and some other leaders
some disabled people in Berkeley
tendants (for orthopedics) and readers
lived for months on a subsistence
who had not been UC students. Direc-
(for blind) more available; an
level. At times prospects for funding
tor John Hessler and others from
accessible housing survey and referral
looked so grim that moving back into
PDSP brought some of them together
service; wheelchair repair services;
a shared office with PDSP seemed
in late 1971. Out of this effort came
mobility and independence training
inevitable.
the first community independent liv-
for blind people; van transportation
ing organization, with Larry Biscamp
for people in wheelchairs; financial
Right Time And Place
and Philip Draper as its elected lead-
aids counseling and advocacy; inde-
ers, using "independent living" offi-
pendent living skills (occupational
Being in Berkeley, in 1972, CIL
cially for the first time to describe the
therapy training for personal care and
was well located to benefit from the
nature and purpose of the support
living); and community action and
collective gains of the equal rights
services system put together in PDSP.
other public advocacy efforts.
and equal opportunity movements in
24
(Top) The several project directors of
California independent living inia-
tives meet to discuss common prob-
lems and share solutions. The remain-
ing photos show various activities
that an independent living center or
project might foster: (2nd row, left) a
wheelchair occupant learns repair
process by observation; (right) Proj-
ect engineer works on power wheel-
chair modifications. (3rd row, left) A
van's electrical system is altered to
allow modifications for power assists
to disabled driver; (right) a course in
computer card punch operation.
25
which other people, from blacks in
disabled people as mandated by the
some features which have remained
the '50s to women in the '70s, had
Rehabilitation Act of 1973. Then he
generally continuous, as well as the
won recognition and redress.
used resources in his department to
differences between their early ex-
Minorities and stigmatized people of
open the way for more government
perience and the first years of CIL. Of
many kinds were no longer ashamed
support to IL programs. He began by
characteristics common to ILPs
and apologetic and were achieving a
allocating more than $700,000 in fed-
through both generations, the most
sense of positive group identity. It
eral innovation and expansion (I&E)
significant involve campus contribu-
was an era of "movements": mind-
grant funds to ILPs. As his Assistant
tions, private organizations, consumer
expansion, self-realization, nonvio-
Director, Roberts appointed John
control, nonresidential orientation,
lence, consumerism, and sexual free-
Hessler, who had founded and di-
and multidisability group coalitions.
dom, among others. But an especially
rected PDSP and was a founder of
important influence came from the
CIL. Hessler's main task for 6 months
Contribution Of The Campus
self-help therapy movements and
was setting directions for grants and
Jobs for university-trained, se-
other organizations modeled after
developmental work with ILPs. Only
verely disabled people were created
Alcoholics Anonymous, such as
after this was administration of the IL
when the college and university sys-
self-help drug treatment groups. The
grant program fully turned over to the
tems in California funded and man-
self-help concept spread to move-
community resources specialists who
dated positions of coordinator for dis-
ments for sufferers from a multitude
regularly managed grants to rehabili-
abled services on each campus.
of diseases, handicaps, and problems.
tation facilities and workshops.
Through these jobs, people trained in
Thus the path for a self-help group of
Berkeley's PDSP and CIL and also in
severely physically disabled people in
Second Generation
the California Association of Physi-
California, while not smooth, was
Californians who were eager to
cally Handicapped (CAPH) were
well worn by predecessor groups.
start ILPs began organizing and ap-
seeded in communities throughout the
plying for the I&E funds. Ten appli-
state and given bases to work from in
Boost From State Government
cations were received and nine grants
programs which usually included IL
In .1974, campaigning on a platform
were awarded averaging $72,000 each
services for students. Community
that promised more attention to
for the 1st year. The organization
interest and service requests from
people on the bottom of the heap,
which did not receive I&E grants,
nonstudents usually followed. The
Edmund G. Brown, Jr. was elected
plus others which had begun activity
campus coordinators and the student
Governor of California. As Governor,
but did not apply, or started too late
groups they developed then often pro-
Brown used his appointive powers
to compete, all had to rely on other
vided the initiative and the staff re-
consistently with the spirit of his
sources. Two of them were already
cruits for later ILPs.
campaign, and Edward Roberts, who
receiving county grants and were able
had become Director of CIL in 1974
to continue on that basis. They were
All In Private Sector
and put it on its financial and organi-
later joined by one other similarly
The idea of a government agency
zational feet, was appointed to head
funded project.
operating IL projects in California
the State Department of Rehabilita-
The other six second generation
was never considered. Starting with
tion. Roberts had been impaired at
California ILPs searched for assist-
CIL, disabled people formed au-
age 14 by polio, which all but totally
ance through their municipalities.
tonomous organizations of their own;
destroyed his limb and hand function-
They found Comprehensive Employ-
or, if necessary, they joined forces
ing and seriously hampered his
ment and Training Act (CETA) public
with a private organization to create
breathing. As a leading supporter and
service jobs, unused city-owned
an ILP. Only then did they zero in on
contributor to PDSP and CIL, he
building space, and small appropria-
government agencies for financial and
strongly favored the IL concept. He
tions of city money. The ad hoc ap-
material support.
was also a living example of what
proach they used is reminiscent of
Most ILPs in California are au-
could be accomplished by a severely
CIL's first years in that their growth
tonomously incorporated. Existing
disabled person.
was more incremental than that of the
private organizations, other than
When he became DR Director,
grant-funded organizations.
CAPH chapters, have sponsored ILPs
Roberts first took organizational steps
Ten of these ILPs have now existed
where an initial "grubstake" or
to re-emphasize services to severely
for 2 years. It is possible to identify
matching money for a large grant was
26
needed. In these cases, relative or
program energies which might go to-
Initial Substitutes For Group
total autonomy for the ILP is part of a
ward IL services and advocacy; and
Strength
future plan.
ILPs, which already provide a great
deal of the social, political, and work
Disabled In Driver's Seat
In CIL's experience, formation of a
life for many members, remain less of
a total environment for them than if
community ILP did not begin until a
A board of directors and a top staff
composed of severely disabled people
cohesive group of severely disabled
they lacked their own separate
were part of CIL from the start. In the
people had already existed in Ber-
residences.
second generation, this has continued,
keley for several years. If anything,
at least to the extent of there being a
More Than Wheelchairs
later development and success some-
strong majority of severely disabled
what eroded the initial group
members on the board and/or a se-
CIL broke some precedents when it
strengths in CIL. ILPs in the second
verely disabled director. In cases
formed a joint organization of young
generation, by contrast, were started
where a larger sponsoring organiza-
blind and orthopedic-motor disabled
before their social underpinnings were
tion with its own board and executive
people. Later, deaf people and deaf
firmly established.
director is the recipient of an ILP
groups were contacted and added their
Existence and activity of California
grant, the ILP's board with a disabled
participation to CIL and to most other
Association of Physically Handi-
California ILPs. These actions estab-
majority sometimes serves as an ad-
capped chapters came before the
visory body and its director as a pro-
lished a principle of coalition rather
growth of the ILP in several areas.
gram manager. Thus a governing
than competition among disability
These were the strongest beginnings
voice in these ILPs remains with
groups which has been followed/gen-
toward developing communities of
people who live all day with problems
erally in the California IL movement.
severely disabled people in those
of severe physical disability. Despite
Differences Between Generations
places at the time. There was also at
the energy limitations which often go
least one founder in several ILP sites
with such disabilities, the inescapable
Recent ILPs began in circum-
who had significant personal experi-
nature of the problems has engen-
stances that more resemble the con-
ences with Berkeley CIL and who
dered a tenacity and a. high involve-
temporary 1978 situation at Berkeley
knew from this the kind of group base
ment with solving them which ac-
and CIL than they do CIL's situation
and movement character they could
count for much of the inventiveness
in its first 2 years.
aspire to. Though important, in the
and creativity in ILP programs and
From the start, the second genera-
second generation, these assets did
services.
tion ILPs have had weaker group
not begin to compare with the social
bonds and less certain impetus as a
substructure which CIL had at its
Not A Place To Live
movement than the first. Also, the
beginning.
California's ILP members do not
new ILP organizations have necessar-
There were at least three conse-
depend on being provided special
ily begun working, as CIL does to-
quences of new ILPs having been or-
group living facilities, although this
day, with less select cross sections of
ganized before their social group and
might be an alternative when accessi-
severely disabled people than those
social movement bases became well
ble housing is scarce. They have enti-
found in Berkeley in the early 1970's.
developed. First, in the absence of
tlement, through various public aid
And the new ILPs have certainly mis-
these strengths, some other resources
programs, to the means of arranging
sed any chance to be "sleepers" and
outside and inside the ILPs had to be
their own living situations. Their need
surprise the world with great results
called on to carry their developmental
centers on basic services, such as
when little was expected.
load. Second, the very fact of calling
consumer advocacy, housing survey
The new generation is cutting its
on outside, local resources required,
and referral services, and help with
teeth on problems of maturity without
at least temporarily, that ILPs accept
attendants. Some advantages accruing
having had the formative experience
some accomodation to the views of
from the nonresidential approach are
which shaped the first generation.
their local helpers. And third, formal
that: conflicting interests of being
The question now is whether it can
program devices had to be added in-
both tenant advocates and landlords
maintain enough of the distinctive
ternally to substitute for the informal
are avoided; burdens and chores of
features of ILPs to keep its special
group resources which were not
property management do not tie up
value and effectiveness.
developed.
27
services than the community advo-
ous degrees for community and politi-
Terms With Local Leadership
cacy and political action that the
cal advocacy, for help in getting fair
Before an "independent living
younger activists preferred. This has
assistance from Welfare, Social Secu-
movement" of severely physically
probably been less true of those
rity and Rehabilitation, and for
disabled people ever existed, there
nongrant-based ILPs which had an
helping people find attendants and
was a minority who were able not
opportunity to develop more slowly
apartments.
only to survive but to make relatively
and carefully and to be more selec-
In Berkeley, group cohesion and
independent lives for themselves.
tive, choosing allies in line with their
momentum of the movement at CIL's
These people were often active in
own inclinations.
founding held off formal organization
their communities as leaders, speak-
For a few second generation ILPs,
of many services and procedures until
ing for other physically disabled
the necessary organizational founda-
size and increasing complexitites in
people. They had not been centrally
tions came from an established group
CIL forced the issue. Second genera-
involved in CIL, which had de-
or agency which sponsored and gave
tion ILPs which were set up rapidly
veloped near a university campus and
its name to the new venture, or ac-
with I&E grants have had to assume
was based on a much younger, self-
tually made the ILP a unit within the
the shape of formalized service pro-
contained group of leaders.
parent organization. This type of ar-
grams much earlier in their existence.
Many of the younger disabled
rangement required an ability to work
The most apparent generational dif-
people had become conscious of
under the sponsor's board and execu-
ference that results is that a concen-
themselves as "outsiders," removed
tive director, to accept their adminis-
trated effort to construct formal pro-
from security and from full participa-
tration and their management of
grams and get them running tends to
tion in life. They were inclined to be
money, and to tolerate their often
detract from the political advocacy
activists, with at least a trace of
nonmilitant approaches to program
function of the projects.
radicalism, and felt strongly about so-
and politics.
Enter Intake And Evaluation
cial justice.
Along with many other fair-minded
Programed Substitutes
As the ILP movement grew, so did
people, however, some of the older,
A closely knit group which par-
applications for services. With the in-
disabled leaders viewed the radical
takes of a social movement, such as
crease came a new problem-dealing
style in Berkeley with unease and
the movement for "disabled rights,"
with more people who were not really
misgivings, mixed with unavoidable
and which works closely on its mem-
ready for ILP services. The first gen-
admiration for its potency and suc-
bers' individual and collective prob-
eration started with a select popula-
cess. The 1977 sit-ins to influence
lems doesn't require much in the way
tion of highly talented, severely dis-
signing of the 504 regulations were
of a special program or administrative
abled people who were already
not a comfortable time for many dis-
structure. Members of such a close
mobilized. They had been attracted to
abled people who had come to rea-
peer group can, for instance, advise,
Berkeley from all over the state and
sonably good terms with society as it
counsel, support, and nurture one
nation. Only after IL was well de-
was.
another; they can provide models, in-
veloped did it have to deal with less-
Organizers of many of the second
spiration, and hope to one another
ready applicants.
generation ILPs in California have
without a program called "peer coun-
But second generation ILPs faced
necessarily included pre-1975 dis-
seling" and without a special peer
the dilemma of "unready" applicants
abled leaders. Once organized, the
counseling coordinator and staff.
from the beginning. Making judge-
ILPs found they continued to need the
What happens, happens "naturally"
ments about "need and readiness"
confidence, help, and support of the
because of the group's closeness and
and applying them to the requests of
older disabled leadership. These "old
the movement's clear direction.
fellow severely disabled people does
hands" were important as experi-
On the other hand, an organization
not come easily to an egalitarian ILP
enced board members, knowledgeable
which is set up without any strong
staff member. However, to see one's
and influential fund raisers, and
preexisting group or close community
work in lining up an apartment or an
skilled volunteers in special
of real peers does have a need to
attendant repeatedly "blown" by a
capacities. But there was a price to
create formal programs from the be-
person who is basically unready for
pay for including them. Their
ginning in order to accomplish these
these experiences and responsibilities
priorities leaned more toward direct
same things. This is also true in vari-
is also hard to take. Initially the social
28
agency idea of specialized "intake"
It is the fact of the grant, however,
assignments and a separate function
its monitoring and renewal, and the
of evaluating newcomers and their
pressure imposed by its time and shar-
needs seemed too "bureaucratic."
ing limits which most affect the
Yet it is a solution which most have
grant-funded ILPs. I&E grants in
had to adopt.
California put the recipient on an im-
The worst effect of "unready" ap-
plied 3-year timetable to self-
plicants is a preoccupation with crisis
sufficiency, with support decreasing
situations, leaving the ILP with few
from 90 to 80 to 60 percent to noth-
resources to support long term inde-
ing. The clock ticks; the sponsor
pendence goals. This problem is most
watches and expects results.
apt to be acute in urban core areas
where severely disabled people fre-
Search For Executive Ability
quently get stuck without adequate
The second generation ILPs were
shelter, food, or attendant care. One
started with expectations that they
downtown ILP, using tough but
would organize themselves promptly
realistic intake and referral proce-
and start efficiently to generate re-
dures, saved itself from being pulled
Special equipment allows this quad-
portable results. Effective organiza-
under by this problem through insist-
riplegic man to answer telephone and
tional leadership and administration
ing that other crisis-meeting agencies
make notes simultaneously.
are essential under these circum-
in the city serve the severely disabled
stances, given their narrow margin of
people who have the same problems
appear to be necessary, so they were
economic survival. Even member
of transience and marginal existence
not offered.)
commitment, their greatest and most
as their able-bodied counterparts.
In the second generation ILPs,
valuable asset, can be eroded through
Ideally, an ILP has an array of
people who would have been consid-
inept management. Therefore, the
services to fit a wide range of readi-
ered "unready" in the early days are
ILPs had to search out the most ex-
ness. The experienced and perceptive
now probably the typical ones being
perienced and skilled managers and
intake counselor can see that some
worked with. Whether or not there
executives. For the ILPs with grant
services are more appropriate for the
should be counseling is seldom ques-
money, this may be both more possi-
newcomer than the things which the
tioned. The questions which do arise
ble and more necessary.
person may ask for. Such use of
are, "What kind of counseling is
The ideal is to find a highly capable
superior knowledge and judgement
needed most and which works best in
administrator who is also severely
does, however, depart from the peer
an ILP?'' or "What differentiates
disabled. However, it is not always
group ideal of equality. Followup
peer counseling from professional
possible to combine these two qual-
contacts to see if people carry through
counseling?" and "How much emo-
ities in one candidate; in such cases
and don't get lost in the service sys-
tional working-through should be in-
preference has to be given to the
tem are also effective, but may leave
cluded, relative to a practical problem
skilled manager. The only com-
workers feeling more like parents or
solving emphasis?"
promise occurs when the job can be
sheep dogs than peers.
divided between two people, one of
Living With A Timetable
whom is disabled. But where neces-
Upgrading IL Feasibility
Structured, external expectations
sity dictates hiring able-bodied direc-
Second generation ILP programs
have an important effect on those sec-
tors, ongoing feelings of inconsis-
give "counseling" an explicit and
ond generation ILPs which get their
tency and misgiving still result.
prominent place. The most commonly
main support from grants. Others may
described unreadiness of applicants to
be less affected because their finan-
Conclusion: Success And Survival
use ILP services is psychological-
cial eggs are not so much in a one-
Questions
social unreadiness; counseling is the
source basket, but they are still liable
Answering the questions which
most common corrective measure. (In
for the resources they are given. This
began this article requires a definition
the early days of CIL, formally con-
will increase as the ILP concept and
of "success." Success for an ILP is
stituted counseling services did not
general expectations grow.
surviving. That means at least paying
29
the rent and the staff. But it also
seeing the whole ILP enterprise
quently. The writer will supply a
means effectively and dependably
prosper, not become too "profes-
California address list compiled from
turning out the needed services.
sionalized"?
the most recent information upon
However, success for an ILP also
With their increasing knowledge
request.
means lasting as a movement and as a
and responsibilities, how well can the
Time has permitted only brief in-
group. If their activity becomes too
leaders keep from becoming removed
quiry about developments in the other
cautious about stepping on (or rolling
from the sub-world of severely dis-
West Coast states of Oregon and
over) toes, or if they become too im-
abled who are still deteriorating
Washington. Rehabilitation leaders
personal to allow participants to
hopelessly and often ignorantly in
most familiar with events in these
spend time joking and sharing with
outer darkness of convalescent hospi-
places have offered the following ref-
one another, then success in the ILPs'
tals, "homes," and other confining,
erences to active and developing pro-
original sense will have eluded them.
dependency centers? With all the
grams with an IL purpose and charac-
This may be harder to attain and re-
urgency of legislation and politics and
ter: E. W. Myers, President, Quads
tain than organizational survival alone
grants and appropriations and budgets
United Against Dependency, Inc.,
and may even be endangered by over
and meetings, how well can time be
5024 SW Slavin Rd., Portland 97201;
concern for organizational solvency.
made for seeing validity in these
Bud Thoune, Adult Services Director,
From the writer's location on the
people's individual experiences, for
United Cerebral Palsy Association of
West Coast, at the start of a research
listening to them, and for talking with
Northwest Oregon, 7117 SE Harold
study about ILPs, it seems likely that
them outside of appointment hours to
St., Portland 97206; Anne Waltz,
important keys to this second part of
get across the "fellow-human-being-
President, Washington Coalition of
success are hidden among some of the
like-me" message? And how well can
Citizens with Disabilities, % Seattle
things they have in common. We have
the rest of the world leave control and
Department of Human Resources, 400
reviewed some of these and will look
ownership of ILPs to the severely dis-
Yesler Street, Seattle 98104; and
at them more closely: at their affinity
abled now that ILPs are accepted and
Michael Clowers, Director, Inde-
with the relatively unorthodox student
sometimes famous?
pendent Living Implementation Proj-
world of the campus, at their organi-
The answer to these questions is:
ect, % Comprehensive Needs Study,
zational autonomy, at their jealously
Only partially, since everyone in-
University of Washington, 1107 NE
guarded consumer control, at their
volved is human. The next question
45th St., Suite 225, Seattle 98105.
avoidance as much as possible of the
is: Will the outcomes be such as to
2) The new work on which this ar-
cares and conflicts of landlordism, at
permit ILPs to survive with their es-
ticle is partially based was done for
their openness to risk coalition with
sentials intact? Our Independent Liv-
an RSA Research Grant, 15-P-
all disabled people in order to be
ing Research Study will deal descrip-
59045/9, with Drs. Herbert Leibowitz
strong in relation to the able-bodied,
tively with these questions, and we
and Leonard Green as Project Coor-
sighted, hearing world, and other
hope to find some clues and answers
dinators for RSA. The author ac-
commonalities yet unidentified.
in time to help make a difference in
knowledges the special help given by
Another place our study will look
the outcome.
members of the California Coalition
for answers is at solutions which ILPs
of Independent Living Centers and by
find to discontinuity and rapid growth
California Department of Rehabilita-
problems, such as those we have
Mr. Brown is a Senior Analyst in the
tion Assistant Director, John Hessler,
pointed out in this article. How well
Research Section of the California
in assembling and evaluating informa-
can government foster the start of ILP
State Department of Rehabilitation.
tion, and the editorial decisions pro-
organizations on a large scale without
He is currently serving as Director of
vided by Harry N. Greenblatt, Chief,
leaving them so lacking in social
the Department's RSA-funded Inde-
and Barbara L. Jones, Office Man-
strength and determination of direc-
pendent Living Projects Study.
ager, of California Department of Re-
tion that they are immediately unsta-
habilitation's Research Section.
ble and prone to cautious and for-
3) From February 1968 to June
malistic answers to their survival
Notes
1970, an Innovation Grant from RSA
problems? How well can ILP leaders
1) In the rapidly developing world
to the California Department of Re-
and staffers who are gaining a world
of independent living projects in
habilitation paid, in part, for special
of expertise in the work they do and
California, organizations are being
services to clients in the Cowell Hos-
in the field they have invented, and
added and addresses are changing fre-
pital Project.
30
IL: A Legislative View
or classes in hand controlled cars or
vans.
These examples reflect different
Kathaleen C. Arneson
concepts and views of "independent
living" which have evolved over the
past 20 to 25 years from the experi-
ence of many different individuals
and programs. Within my own
perspective of years reviewing and
helping to develop federal legislation
on rehabilitation, I have seen the con-
cept develop, take on a variety of
elements, and move through various
stages, at times being expressed in
legislation.
First-there was and is an em-
About 25 million disabled people
the next phases of national policy de-
phasis upon aids to daily living. This
are directly affected by P.L. 93-516
velopment and legislative action on
is a "medical model'' that is
(the 1974 Amendments to the Re-
"Independent Living" for people
exemplified by teaching impaired
habilitation Act of 1973), legislation
with disabilities.
people to attend to their personal
which established the White House
As this paper is written, the 95th
needs (bathing, dressing, moving
Conference on Handicapped Individu-
Congress, in the Spring of 1978, is
about, using the bathroom, eating,
als. In this Act, Congress took action
considering proposed legislation to
reading, going into and out of rooms
to help people with disabilities
authorize today's version of that ex-
and buildings, Laccessing to wheel-
minimize their dependence and en-
citing and attractive (if somewhat elu-
chairs, cars, buses, and the like.)
hance their access to productive, par-
sive) term "Independent Living," a
The concept took form in legisla-
ticipatory lives. It reiterated congres-
term which conjures up visions of
tion which emphasized "rehabilita-
sional concern for removing barriers
physically restored people throwing
tion" as a legitimate objective of
of all kinds that inhibit the life styles
away their crutches and striding off
health services legislation and in state
of people with disabilities.
purposefully to work. Other pictures
architectural barriers legislation
In one key provision, Congress
come to mind-the formerly home-
which had the objective of making
stated that it was essential that rec-
bound (perhaps a bed-ridden child
public buildings more "accessible"
ommendations be developed to assure
with disabilities) now has been given
to people with functional limitations.
that all people with handicaps be ena-
special tutoring, has been physically
"Independent Living"
bled to live their lives independently
restored and trained to eat in socially
then began to take the form of an em-
and with dignity. Further, it was
desirable ways, and is now being
phasis upon help through the provi-
stated that the complete integration of
picked up every school day to go off
sions, as needed, of services within
all handicapped people into normal
to special education and regular
the familiar constellation of voca-
community living, working, and serv-
classes. The vision might be of a
tional rehabilitation services to se-
ice patterns be held as a prime na-
newly blinded, older woman who is
verely disabled people who had no
tional objective.
now able to bathe, dress, and other-
clear vocational potential. The
These clearly stated congressional
wise care for herself without perma-
rationale was that while an agency
objectives can be used as a starting
nent attendant care because she has
provided services to assess employa-
point in the further evaluation of a
been taught the activities of daily liv-
bility, it also would help the client
National Policy on Disability for the
ing and has learned to cook and serve
gain facility in coping with the envi-
1980's. They also can serve as the
meals in her newly modified kitchen.
ronment and, perhaps, ultimately pre-
basis for the development of new
Or, in your mind's eye, it might be
pare him for some level of vocational
concepts and commitments for action
the several young paraplegics who
effort.
on the part of government and other
live together in a specially adapted
The action legislation which au-
sectors of society in working through
house and who drive off to their jobs
thorized this type of independent liv-
AMERICAN REHABILITATION
31
ing came through the provision of ex-
tion action programs, and general ad-
services, nonvocational social de-
tended evaluation services, such as
vocacy functions. This concept was
velopment assistance, and indi-
those under the Vocational Rehabili-
embodied in legislation introduced in
vidualized case management.
tation Act of 1965. The Congress also
the 94th Congress by Congressman
The next section of the proposal,
gave legislative expression to this
Koch of New York. No action has
Part C, contains authorization to es-
emphasis in the Federal Architectural
been taken on the bill.
tablish models. The independent liv-
Barriers Act of 1968 and in the Urban
Fifth-The stage of "comprehen-
ing program encouraged by this sec-
Mass Transit Act Amendments of
sive services for the severely dis-
tion is residential in character and in-
1970 which mandated rights of dis-
abled" and models of independent
volves the development and demon-
abled people to use public transit.
living.
stration of a continuum of alternative
Also, there were provisions in the
Congressional Initiative. The most
living arrangements (including group
1964 public housing legislation refer-
significant legislation under consid-
homes or other community living ar-
ring to the need for housing for dis-
eration by Congress is S. 2600, intro-
rangements or facilities).
abled people and the elderly.
duced by Senators Randolph, Staf-
The Administration's Initiative.
Third-A new stage evolved in the
ford, Pell, and Hathaway.
The Administration's 1978 proposal
early 1970's. It was the product of a
According to its sponsors, Title II
for independent living, testified to by
coalescing of efforts to identify and
of this proposed legislation would es-
RSA Commissioner Robert Hum-
advocate the rights of groups of se-
tablish a new rehabilitation program.
phreys, is an expansion of the inde-
verely disabled people who needed
Its thrust would be to deliver com-
pendent living service projects pro-
one or more of several comprehensive
prehensive services to severely handi-
gram initiated as part of the Com-
rehabilitation services over an ex-
capped people who are identified as
prehensive Needs Study, undertaken
tended period, sometimes for life. At
needing multiple, continuing, and
in 1975 under the requirement of Sec-
this stage, the concept included the
probably lifelong services and treat-
tion 130 of the Rehabilitation Act of
development of the person toward
ment. They are also identified as
1973.
goals short of employment. These
perhaps having little or no vocational
The Administration's proposal for
goals might have been deinstitution-
potential.
1979 is to double funds available and
alization, lessened dependence on
In contrast to other independent liv-
expand the number of current projects
family members or attendants for
ing legislative proposals, this bill in-
from 5 to 10. In 1980, this series of
daily care, independence in
cludes, in Part A, a "rights" concept
projects would be greatly expanded in
homemaking, or the establishment of
drawn from the current Developmen-
number evaluated, and, hopefully,
mobility within the community
tal Disabilities Act. Similarly, the in-
replicated in greater numbers of areas
through driving adapted cars, and
dividualized plan of service has
in 1981.
other similar goals that led to a more
become part of the concept and pro-
A companion series of com-
independent life style. The 1972 and
gram. The protection and advocacy
munity-based projects would improve
the first 1973 Rehabilitation Act con-
systems developed for the develop-
local service delivery and modify ar-
tained legislative proposals for com-
mentally disabled are extended to the
chitectural and attitudinal barriers.
prehensive rehabilitation services to
larger population.
These are some of the main ideas
express this concept. The two Acts
Part B authorizes a grant program
now being put forward in legislation
were vetoed.
to stimulate states to extend present
under the "Independent Living"
Fourth-Another stage or expres-
services programs for the most se-
rubric.
sion of independent living involves
verely disabled without vocational po-
By September 1978 (about the time
self-help in the concept of services in
tential. States would have flexibility
of issuance of this edition of Ameri-
centers for independent living. This
in service provision, but would have
can Rehabilitation), we should know
often is typified by a physical struc-
to develop a detailed, long range plan
whence we shall go for the next 3 to 5
ture (such as a rehabilitation center or
that would strive toward the goal of
years in perfecting the Independent
residence) and a set of activities and
comprehensive services for all se-
Living Rehabilitation Services
services, often developed and man-
verely disabled people.
concept.
aged by disabled people. The program
In developing new services, states
involves peer group counseling, small
would have to consider community
Mrs. Arneson is Director of Policy
business activity, community educa-
living assistance, infant and preschool
Research and Legislation, RSA.
32
Illinois Program
currently in operation and make rec-
agencies, such as: services offered,
(Continued from page 16.)
ommendations, where appropriate, to
eligibility requirements, access to
enhance the delivery of services to
public transportation, to discuss
cluding accessibility, transportation,
disabled people. One of the ob-
building accessibility, etc. Project
housing, etc. Two representatives
jectives of TAC is to insure that all of
staff members are contacting realtors,
from each regional council serve on
the state's resources are available to
landlords and providers of public
the State Consumer Advisory Council
handicapped people. In this regard,
transportation to discuss accessibility
to advise the DVR Board and Direc-
although the Department of Conserva-
issues and the special needs of dis-
tor. The goal of the Regional Coun-
tion is not participating actively in the
abled and elderly people. There are
cils is to receive consumer input into
TAC Committee, for example, the
three attendant-instructors on the
every decision-making level within
Committee is insuring that recreation
staff who provide short term service
DVR. They provide a resource for
needs for the disabled are met. Also,
directly to disabled and elderly peo-
peer counseling for active DVR
within the TAC Committee a Sub-
ple and their families at home. Such
clients. These councils also serve as a
committee on Section 504 has been
services may include self-care and
resource for other committee ac-
created. This Subcommittee is ad-
hygiene, budgeting, community liv-
tivities and public and private agen-
dressing the concerns of 504 im-
ing skills, and adapting the home to
cies that impact upon DVR.
plementation within all state agencies.
individual needs.
4. Technical Advisory Committee
5. Independent Living Services
Although these are just a few of the
(TAC)-This Committee, organized
Project-Developed and monitored by
programs initiated toward total re-
and developed by Governor James R.
DVR and funded by the CETA
habilitation for disabled people,
Thompson and headed by the DVR
Sangamon-Cass Consortium, this
it is ambitious. We are attempting to
Director, seeks to identify those state
project began December 1, 1977. It
take the VR model and program and
services which are duplicated, under-
has developed a Service Directory
enhance it to include the ILR concept.
utilized or nonexistent for serving
containing information obtained from
disabled people. Representatives
180 public and private social service
Mr. Jeffers is Director, Illinois DVR.
from the state's social service agen-
cies are preparing a report for the
Governor in which these programs
will be described and recommenda-
Massachusetts Program
tional living and accessible apart-
tions made to enhance service deliv-
(Continued from page 22.)
ments in the low to moderate income
ery for the disabled citizens of Il-
range. The challenge for Independent
linois. Those agencies participating
the needs of the physically handi-
Living Programs in the future is ba-
are: Departments of Public Aid, Ag-
capped. Previously, this source of
sically the same as for de-institution-
ing, Labor, Children and Family
funding had been applied to develop
alization: to avoid creating many
Services, Public Health, Mental
community residences for other popu-
mini-institutions throughout the
Health and Developmental Disabil-
lations. Also, a modernization and
community where physically disabled
ities, the Governor's office. Goals of
rehabilitation section in the State
people are isolated from life experi-
the Committee are: a) to provide to
Public Housing Statute, passed in late
ences. Some of this is attitudinal by
the Governor essential policy advice
1977, will make more housing
the community and indeed by dis-
and recommendations relating to re-
available.
abled people themselves. Independent
habilitation services; b) to provide a
In summary, successful independ-
living training, which addresses sur-
forum for the Governor and consum-
ent living depends on three basic ele-
vival in the community, both physi-
ers to allow discussion and articula-
ments: expertise in organizing the
cally and psychologically, is the next
tion of state policies and programs af-
nonprofit agencies to meet the pro-
step in developing the independent
fecting handicapped persons; c) to
grammatic need; funding for the indi-
living program into a total program.
develop interagency relationships to
vidual PCA needs of severely physi-
insure the effective coordination of
cally disabled people (under
state resources to programs affecting
Medicaid, Title XX, or some other
Mr. Bartels is Commissioner, Mas-
handicapped people; and d) to re-
state program); and finally, architec-
sachusetts Rehabilitation Commis-
view, analyze, and study programs
turally accessible facilities for transi-
sion.
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