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Grabois-Promotion [Articles, Awards, Recommendations] [1979-1992]
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Grabois-Promotion [Articles, Awards, Recommendations] [1979-1992]
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Lex Frieden Collection: Records on Disability Rights
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Record Group/Collection:
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Personal
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Folder Title:
Grabois-Promotion [Articles, Awards, Recommendations] [1979-1992]
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11-15-79
8'3'
Post
Coll
Organized
Consumerism
At Local Level
Lex and Joyce Frieden
Handicapped people are becoming
Organized in 1975 by a group of
compiled data and printed A Guide to
more and more involved in the
about 20 people in wheelchairs, the
Houston for the Handicapped, and it
mainstream of everyday life. As a re-
CBFL was originally conceived to be
participated in the organization of the
sult of enlightened attitudes, legisla-
a federation of organizations of
American Coalition of Citizens with
tive rights mandates, and modern
handicapped people. However, it
Disabilities.
technological advances, disabled
soon became apparent that there were
Although most of the organiza-
people are having more opportunities
not enough active organizations in the
tion's early accomplishments were of
to be heard. Organizations, both pub-
Houston area to justify and support
a service oriented or educational na-
lic and private, are seeking the advice
such an umbrella organization. As a
ture, the CBFL also began to assert
and opinions of disabled people on
result, the organization was structured
itself publicly as an advocate for dis-
matters which affect them both di-
to be a broad-based, cross-disability
abled people in the community.
rectly and indirectly. Handicapped
group with provisions for both indi-
Speaking cautiously at first, the lead-
people are being hired to fill de-
vidual and group membership. The
ership of the CBFL met with public
cisionmaking positions and to work as
formally stated purpose of the organi-
officials to ask for accommodations
consultants in many fields. Advisory
zation was "to minimize the barriers
such as curb ramps and accessible
committees and task forces made up
that obstruct the handicapped indi-
transportation. After polite but gener-
of handicapped people are suddenly in
vidual from achieving the equality of
ally ineffective meetings with city
vogue.
opportunity and respect due every
fathers and program administrators,
With all of these initiatives, handi-
human being."
and, with increasing support from
capped people are beginning to seek
Early meetings of the CBFL were
both the disabled and nondisabled
and find new ways of meeting the
held monthly and attended by a com-
community, the group became more
demand for their representative and
mitted core of 10 to 25 people. Most
outspoken and more adamant about its
meaningful involvement. Consulting
of them were wheelchair users, and
positions.
and advocacy organizations are being
most knew each other from previous
By 1977, the organization had be-
formed everywhere. The coalition
acquaintance. Using funds obtained
come fairly well organized. With a
theme is predominant. The American
from nominal membership dues, con-
membership of about 200. individuals
Coalition of Citizens with Disabilities
tributions, and an annual festival/
and several groups, including the
has been working at the national level
picnic, the Coalition worked on sev-
local Paralyzed Veterans of America
for several years. Statewide coalitions
eral significant projects during its first
and Indoor Sports Club chapters, the
of handicapped people have recently
2 years of existence. It helped to plan
CBFL was recognized by policy mak-
been formed in Texas, Oklahoma,
and organize a yearly job fair for
ers as the "voice of the disabled" in
California, and Massachusetts.
handicapped people. It produced two
Houston. Two full time VISTAs
Among those organizations which
films illustrating the effectiveness of
(Volunteers in Service to America)
have demonstrated consumerism and
the Coalition in overcoming various
were assigned to the Coalition to help
advocacy on the local level is the Co-
barriers confronting handicapped
with organizational matters, a CETA
alition for Barrier Free Living
people in the Houston area. It began
grant was obtained to hire a full time
(CBFL) in Houston, Texas.
publishing a monthly newsletter. It
newspaper editor, and an office was
3
set up at a local rehabilitation center.
By the end of the year, the organiza-
tion had lobbied successfully to have
the City of Houston initiate a multi-
million dollar public access campaign
which included plans for remodeling
public buildings and parks, for con-
structing hundreds of curb ramps, and
for starting a barrier free public trans-
portation service.
Shortly after the White House
Conference on Handicapped Individu-
als, the CBFL leadership implicitly
analyzed the past and future of the or-
ganization and came to two important
and somewhat problematic conclu-
sions. First, in order to continue
growing and in order to maintain
credibility, the organization needed
more representation from groups of
disabled people other than those in
(Above) Houston coalition meetings bring together representatives of several different groups
wheelchairs. Second, in order to ad-
with sign language always present. (Below). Coalition members are interviewed for local TV in
continuing effort to break attitudinal barriers.
vocate effectively at the state level, a
statewide coalition was needed.
The first problem was addressed in
several ways. Delegates from the
CBFL began to attend functions spon-
sored by organizations of hearing im-
paired and visually impaired people.
Likewise, representatives of these
groups were actively recruited to at-
tend Coalition functions. Coalition
members began taking lessons in
manual interpretation and the CBFL
newspaper was made available on
audio-tape cassettes. Hearing im-
paired and visually impaired people
were nominated and elected to serve
on the CBFL Board of Directors, and
the organizational bylaws were
amended to create standing commit-
tees to deal with communication- and
vision-related barriers. As a result of
these efforts, the Coalition became
In order to address the problem of
leaders from the other four states in
much more representative of the dis-
insufficient representation at the state
Federal Region VI. With grant funds
abled community at large. However,
level, the Coalition made plans to
provided by the Rehabilitation Re-
the organization continues to lack
sponsor a statewide organizational
search and Training Center (RT-4) in
substantial participation by blind
meeting. In the process of seeking
Houston, the CBFL Consumer Lead-
people or representatives of organiza-
funding for this project, the meeting
ership Training Conference and Or-
4
tions of the blind.
was expanded to include consumer
ganization Workshop was held early
F3
Sam
(Above left) VISTAs, Mary Ellen Heitzer and
OF
Carol Lustgarten, assist in organizational
matters. (Above, right) For the first time in
her life, Mary Ann Board enters a full sized
public bus. (At left) Mayor Jim McConn ac-
knowledges coalition efforts to breakdown
physical attitudinal, and communication bar-
riers. (Below, left) CBFL works with groups
like Van and Sign Co. (a group which trans-
lates rock músic into sign language). (Below,
right) CBFL President, Joyce Frieden
(wheelchair, left) discusses a delicate issue
with a representative of the Houston mass
transit agency.
5
in 1978. As a result of this meeting,
Union have included representatives
and planned confrontations with pub-
the Coalition of Texans with Disabil-
of the CBFL on their boards and ad-
lic officials and program adminis-
ities was formed, the Oklahoma Co-
visory committees. A local television
trators.
alition of Citizens with Disabilities
station produces a biweekly program
Organizations of disabled people
was strengthened, and statewide co-
in association with the CBFL entitled,
can work cooperatively with natural
alitions were planned for Arkansas,
Coalition Circuit. The City of Hous-
allies such as vocational rehabilita-
Louisiana, and New Mexico.
ton is engaged in implementing a pro-
tion, Goodwill, Easter Seals, and
With membership approaching 300,
posal by the Coalition to do a com-
medical rehabilitation agencies to im-
the CBFL is about to take another big
prehensive demographic study of the
prove the existing service delivery
step by securing substantial funding
estimated 300,000 disabled people in
system and enhance the process of
to support several service projects and
the Houston area.
service coordination at the local level.
a major building project. Beginning
One may draw several conclusions
Consumer organizations may fill
this summer, the CBFL will receive
from the CBFL experience:
service gaps and/or provide important
CETA funds to operate a program for
attendant recruitment, training, cer-
Organizations are needed at the
services not provided by traditional
tification, and placement. This project
local level to complement and support
service provider agencies. They often
will employ 3 full-time persons and
state and national organizations and to
serve as sources of advocacy, infor-
insure grass-roots implementation of
mation and referral, public education,
36 attendants during its 1st year.
Another activity awaiting funding is a
laws and programs which are promul-
and peer counseling.
New organizations like the CBFL
citywide employment/placement
gated at other levels.
are springing up every day and old
coordination project designed to or-
Even with small budgets and few
ones continue to prosper in com-
ganize and consolidate the efforts of
active members, organized groups can
munities across America. By helping
various employment agencies as they
wield immense influence compared to
to form and being active in these or-
relate to disabled people. Finally, the
individuals who work alone.
ganizations, disabled people and their
Coalition expects to receive $3 to $5
Coalitions are generally better
nondisabled proponents can influence
million from the City of Houston to
representatives of the disabled com-
public policy, change parochial at-
build a multi-purpose center for dis-
munity than individual groups.
titudes, and insure the provision of
abled people. This facility will in-
Whereas most organizations of dis-
needed services. Through the collec-
clude meeting space, offices, and
abled people usually address issues
tive effort of these organizations; the
classrooms for the Coalition.
common to a single disability group,
general public will become more
It should be noted that the CBFL
coalitions often address issues which
aware of the potential of disabled
board which initiated these projects
are common to all disabled people.
people. At the same time, the public
does not intend to manage them, but
Even concerning issues facing people
will learn more about the needs of
rather to form auxiliary boards and
with a single type of disability, coali-
disabled people and how those needs
affiliated nonprofit corporations to do
tions are frequently able to generate
can best be met. As these organiza-
so. It is reasoned that this approach
massive efforts by bringing together
tions and the support they are bound
will provide more opportunities for
sympathetic groups and promising re-
to generate grow, it is likely that the
members to become involved in Co-
ciprocal cooperation in the future in
public will provide the means neces-
alition activities as volunteer direc-
exchange for support on present is-
sary to help disabled people more
tors, project employees, and advisory
sues.
nearly reach their true potential.
committee members. Furthermore, it
is felt that the CBFL's integrity as an
Consumer organizations are more
advocacy group might be com-
likely than other agencies to assume
the risk of retribution and demand ac-
Mr. Frieden is New Options Research
promised by assuming too much re-
Director, The Texas Institute for Re-
sponsibility as a service provider.
countability by public officials and
With respect to advocacy-related
publicly supported programs.
habilitation and Research (TIRR),
Houston, Texas. Ms. Frieden is
activities, the Coalition continues to
Various methods may be used by
President, Coalition for Barrier Free
be aggressive and outspoken. Other
groups to reach organizational goals.
Living (CBFL), Houston.
community organizations such as the
These methods range from subtle in-
United Fund, the Cultural Arts Coun-
filtration and manipulation of unre-
6
Work on this paper was supported, in
cil, and the American Civil Liberties
sponsive systems to demonstrations
part, by RSA grant RD22-P-59106/
Independent Living:
HOUSTON
EXPERIENCE
Lex Frieden
Independent living means par-
skills required in order to live inde-
coordinated through the use of an ac-
ticipating in day-to-day life and
pendently. Most of the 40 people who
tivity board. The activity board has
making decisions that lead to self de-
lived in the project in its 3 years of
the residents listed with their apart-
termination. For disabled people, this
operation as an RSA-funded research
ment number and a code by which the
implies living in the community,
and demonstration project began
attendants know what is needed each
away from custodial institutions, and
working or going to school while they
day for each resident, such as dress-
being responsible for one's own af-
lived there. The average number of
ing, preparing a meal, turning and
fairs.
residents at any time was 12.
transferring, personal hygiene, and so
This style of independent living
Most people graduated from the
on. Each resident is responsible for
may be facilitated by community
Cooperative Living program in about
making sure that each service he or
based programs which provide serv-
15 months and moved to more inde-
she requires is recorded on the activ-
ices like attendant care, transporta-
pendent living arrangements in the
ity board.
tion, peer counseling, equipment
community. Many of them chose to
Transportation to and from neces-
maintenance, and information about
continue sharing support services and
sary activities is provided by the proj-
other services.
formed their own corporations to pro-
ect from 7 a.m. to 6 p.m., Monday
In Houston, a variety of independ-
vide independent living services.
through Friday, in a specially
ent living programs have evolved to
These organizations, like Independent
equipped van. Transportation charges
assist severely physically disabled
Lifestyles, Free Lives, and CLASP
average $85 per month.
people. The first of these was the Co-
(Cluster Living and Shared Provid-
Independent Lifestyles is recog-
operative Living Residential Project,
ers), exist in Houston today as inde-
nized by the Texas Rehabilitation
which operated from 1972 through
pendent entities.
Commission as an approved vendor of
1975.
Independent Lifestyles
services. The project is directed by a
Cooperative Living
board elected from the residents
Independent Lifestyles, Inc. pro-
themselves. Financial support for the
Organized by a group of severely
vides supportive services for 23 se-
program comes from charges to resi-
physically disabled people who were
verely physically disabled persons
dents, which are below the actual cost
former patients of the Texas Institute
who live at Banyan Townhomes, a
of providing the service, and from
for Rehabilitation and Research,
group of condominiums developed
contributions.
(TIRR), Cooperative Living demon-
and financed by the residents them-
strated the benefits of sharing services
selves. Attendant care is available on
Free Lives
required to support independent liv-
a 24-hour basis. Each resident pays
Free Lives is a cluster of 11 se-
ing. Housed in a barrier-free
for his or her own attendant care ac-
verely disabled persons who live in
dormitory-style building near
cording to the number of hours of
the same wing of the 292-unit Inde-
downtown Houston, the Cooperative
service subscribed to each month. The
pendence Hall, an FHA 236 project
Living residents hired and managed
average monthly charge for attendant
for handicapped and elderly people.
their own attendants, arranged for
care ranges from $175 to $230.
Each resident has his or her own bar-
their own transportation on a shared
Independent Lifestyles has an of-
rier free apartment and subscribes to a
basis, and generally practiced the
fice where attendants activities are
cooperative attendant service. Routine
23
AMERICAN REHABILITATION
(Left) Author Lex Frieden: (Right) Terry En-
sign is one of the 20 homeowners of Banyan
Condominiums. (Below, left) Vick Sorrells
discusses independent living with New Op-
tions participants and, next photo, staff as-
sociates fill teaching and peer counseling
roles at New Options. (Below, right) Garry
Hill demonstrates van lift and, next photo,
Charles August demonstrates methods of
wheelchair care. (Photos, page 25) Photos
show wide range of activity from rights advo-
cacy to Laura Gerken's hosting friend in her
home.
24
physical care activities are scheduled
Section 8 agreements. Monthly rent at
6-week, live-in program supported by
by the residents, and the 12 person
Willow Woods is $325 for a two
the Rehabilitation Services Adminis-
staff is managed by a chief attendant.
bedroom apartment.
tration, the Rehabilitation and Train-
Cafeteria service is available in the
Transportation is available via
ing Center 4 at TIRR, and the Texas
complex, although some residents
Houston's Pick Me Up service for
prefer to use their own kitchens for
Rehabilitation Commission. The pro-
disabled people on an advance reser-
gram presents certain information,
preparing meals.
vation basis at $1 per trip, or on a
skill training, and experiences in an
Transportation is provided on a
limited, no cost basis from Creative
effort to facilitate the behavioral
prescheduled basis by the apartment
Handicaps.
adaptation and personal adjustment of
sponsors, Houston Goodwill. Service
New Options
people to severe physical disabilities.
charges are based on mileage. The
It is composed of three primary ele-
City of Houston also operates an ac-
The original Cooperative Living
cessible dial-a-ride service which
ments: a residential support system;
project actually evolved into an inde-
individual counseling and consulta-
serves Independence Hall. Apartment
pendent living skills training program
tion; and training, practice, and in-
rent ranges for $97.50 to $172 per
called New Options. New Options is a
formation modules. The residential
month, depending on the resident's
ability to pay. Attendant services are
$260 per month. Some resident's
services are subsidized by the Texas
Rehabilitation Commission and
Goodwill. Free Lives has an elected
grievance council and a resident ad-
ministrator who interact with the at-
tendant manager and the project man-
agement.
Creative Handicaps
Creative Handicaps is a voluntary
organization of disabled and nondisa-
bled people which sponsors an inde-
pendent living service program. The
project is located at Willow Woods
Apartments in Southwest Houston. In
contrast to Banyan Townhomes and
Independence Hall, Willow Woods is
an ordinary apartment complex where
most tenants are able bodied. Twenty
units in the complex have been
adapted to be relatively barrier-free.
Creative Handicaps coordinates at-
tendant care and transportation for 29
severely disabled persons. Residents
pay $220 per month for attendant
care. Some residents receive
Medicaid benefits which help pay
their attendant care expenses.
Although some residents are eli-
gible for Section 8 rent subsidy from
the Houston Housing Authority, the
apartment owners have discontinued
25
support system includes attendant,
FREEWHEELING
education programs, and others. All
food, and transportation services. In-
of these services should enhance the
dividual counseling and consultation
feasibility of independent living by
at New Options is provided primarily
severely disabled people in Houston.
by full time professional staff. Coun-
Conclusions
seling is directed toward solving spe-
cific, individual problems, identifying
Several interesting conclusions may
needs, and developing future plans.
be drawn from the Houston experi-
The key element of New Options is
ence. First, there is no doubt that well
the training module. Presently there
conceived and well managed service
are 11 such modules that focus on
BARRIER
FREE
program's can provide the support re-
such subjects as financial manage-
quired for most severely disabled
ment, consumer affairs, living ar-
Products of the Coalition for Barrier Free
people to live independently. Also, it
rangements, functional skills, mobil-
Living are not limited to printed materials but
appears as if a broad range of inde-
include projects like the planned Independent
ity, sexuality, homemaking skills,
pendent living services must be pro-
Living Center.
vocational-educational opportunities,
vided in order for a program to be
medical needs, and social skills.
really effective and to meet the needs
Active disabled people who serve
of people with varying degrees of se-
as role models are employed to lead
based service programs and the ab-
vere disability. In addition, programs
the modules. Each module generally
sence of sufficient numbers of
must be flexible enough to evolve
meets once a week for 2 to 4 hours. A
barrier-free living units. The Coali-
over time as the environment and the
number of educational techniques,
tion for Barrier Free Living (CBFL),
needs of the disabled community
mostly of an experiential nature, are
a local diabled rights advocacy or-
change. Furthermore, programs
used in the modules to transmit in-
ganization, is presently attempting to
should be planned and managed with
formation. Field trips are used exten-
alleviate these problems by en-
substantial involvement of disabled
sively to provide opportunities for
couraging and assisting in the de-
people throughout the process in
participants to observe various situa-
velopment of new programs in the
order to maintain self-determination.
tions first hand. Considerable free
areas of transportation, attendant
Finally, programs need to be commu-
time is programed into the schedule
care, job placement, housing, barrier
nity based and comparatively
so that participants may explore the
removal, and information sharing.
noninstitutional to avoid paternalism
community on their own, practice ac-
CBFL recently proposed that the
and to encourage integration.
tivities individually, or complete per-
City of Houston Community De-
Today, as a result of independent
sonal agendas.
velopment Division build a center for
living programs, many severely dis-
Eighty people have participated in
the handicapped. The project was
abled people are living independent
the New Options program thus far.
awarded a $3 million grant from the
and productive lives. However, the
Most of them were living in nursing
U.S. Department of Housing and
need for more programs providing
homes or with their parents before
Urban Development. Plans call for
attendant care, transportation, and
they entered the program. Only a few
this center to be managed by a board
housing in a coordinated fashion is
had tried to work or go to school.
composed primarily of disabled
critical. Without these additional pro-
Now, almost half of the former par-
people appointed by the CBFL. The
grams and the funding needed to sup-
ticipants are living more independ-
facility will house a completely ac-
port them, independent living will
ently than they were before, and more
cessible gymnasium and swimming
remain only a dream for thousands of
than half are working or going to
pool, a specially adapted auditorium,
people confined to nursing homes or
school.
equipment repair areas, meeting
living with their parents because there
rooms, classrooms, and office space.
are no suitable alternatives.
New Initiatives
Services offered through the center
In spite of these progressive pro-
will include attendant referral and
grams, the greatest barriers to inde-
training, financial and legal advo-
Mr. Frieden is New Options Research
pendent living by severely disabled
cacy, peer counseling, housing
Director, Research Director, The In-
people in the Houston area are the
locating and modification, transpor-
stitute for Rehabilitation and Research
26
lack of comprehensive community-
tation information and referral, public
(TIRR) Houston.
Special Article
Independent Living Models
LEX FRIEDEN
Introduction
for this to happen. In many instances these services
A
N INDEPENDENT LIVING PROGRAM has
relate to basic needs like housing, transportation, and
been defined as a community based program
attendant care. However, in some cases these services
having substantial consumer involvement that pro-
relate to more career oriented goals like education
and work.
vides directly or coordinates indirectly through refer-
ral those services necessary to assist severely disabled
individuals to increase self-determination and to
Mr. Frieden is director of research for the New Options
minimize unnecessary dependence on others. Serv-
Transitional Living Project at the Texas Institute for
ices provided or coordinated include housing, attend-
Rehabilitation and Research in Houston, Tex. He is also
ant care, readers and/or interpreters, and information
director of a federally funded independent living research
about goods and services relevant to independent liv-
utilization project, and a member of the faculty of the
ing. Other services that may either be provided or
Baylor College of Medicine. Mr. Frieden, a quadriplegic,
coordinated by an independent living program in-
has been involved in the organization of several groups of
clude transportation, peer counseling, advocacy or
disabled individuals, including the American Coalition of
political action, independent living skills training,
Citizens with Disabilities and the Houston Coalition for
equipment maintenance and repair, and social or rec-
Barrier-Free Living. Working in the independent living
reational services.¹
movement by severely disabled persons since the early
Let us examine this definition more closely. There
1970's, be is a frequent contributor to the literature in
seem to be three major elements which constitute the
this area and has published several papers on independent
substance of this definition. They are: community
living, including the background paper on Community
based, consumer involvement, and service provision.
and Residential Based Housing for the White House Con-
Community based implies that the programs are de-
ference on Handicapped Individuals.
signed to serve the needs of a population in one par-
An expanded version of this article will be included as
ticular community as opposed to a region, state, or
part of a forthcoming publication entitled Independent
nation. Community based as it applies to this defini-
Living Service Centers, to be published as an Institute
tion also means that programs are rooted in the com-
on Rehabilitation Issues document by the Arkansas Re-
munity which they serve to the extent that they are
habilitation Research and Training Center, Hot Springs,
dependent upon the people and resources in that
Ark., in December of this year.
community for direction and subsistence. Consumer
Research for this article was supported in part by the Na-
involvement implies that these programs depend
tional Institute of Handicapped Research, U.S. Dept. of
upon people who receive their services, people who
Health, Education, and Welfare, under grant #22P-
have in the past received services, or people who may
59106/6-01. For further information or technical assist-
at some time in the future receive services to provide
ance related to independent living, contact the author at:
leadership and assistance by serving on boards of di-
Independent Living Research Utilization Project, Texas
rectors, advisory committees, and by working as paid
Institute for Rehabilitation and Research, 1333 Mour-
sund, Houston, Tex. 77030.
or volunteer staff persons in the program. Consumer
involvement in this case insures that programs do not
lose touch with the needs of their clients, and it
In order to gain a better understanding of the pos-
means that they will maintain a sort of grass roots,
sible structures and functions of independent living
down-to-earth character and richness. Service provi-
programs, let us look at three types of programs iden-
sion indicates that these programs are not simply so-
tified by the Independent Living Research Utilization
cial clubs or political action groups. They are in the
(ILRU)* project in an extensive 1978 survey. After
business of enabling severely disabled people to live
polling more than 450 programs that claimed to be
comparatively independent lives in their own com-
providing services for independent living, ILRU iden-
munities by providing whatever services are necessary
*ILRU is a federally funded independent living program techni-
cal assistance project. Located at the Texas Institute for Rehabilita-
¹Frieden, Lex; Richards, Laurel; Cole, Jean; and Bailey, David.
tion and Research (TIRR) in Houston, Texas, ILRU conducts re-
"A Glossary for Independent Living." ILRU Sourcebook: A Tech-
search, training, and consultation, and produces written and
nical Assistance Manual on Independent Living. Houston, Tex.:
audiovisual materials related to independent living of severely dis--
TIRR (Institute for Rehabilitation and Research), 1979.
abled people.
JULY-AUGUST, 1980, Vol. 41, No. 7-8
169
SPECIAL ARTICLE
tified 35 programs that were actually community
tunities, medical needs, living arrangements, social
based, had substantial consumer involvement, and
skills, time management, functional skills, sexuality,
provided services to assist severely disabled people to
and so forth. Transitional programs are usually goal
increase self-determination and minimize unnecessary
oriented and/or time linked. It is important to keep in
dependence on other people. Of those 35 programs,
mind that both of these types of programs must also
only 12 met the definition of an independent living
be community based, have substantial consumer in-
center as originally characterized by the Center for
volvement, and increase personal self-determination
Independent Living in Berkeley, California, as it is
and minimize unnecessary dependence on others.
generally understood by the leaders in the independ-
Thus, we have three types of independent living
ent living movement around the country, and as
programs: centers, residential programs, and transi-
codified in California law. The definition of an inde-
tional programs. Each of these are similar to the ex-
pendent living center in this strict sense is a nonresi-
tent that they are community based, have consumer
dential, community based, nonprofit program which
involvement, and provide services designed to facili-
is controlled by the disabled consumers it serves, and
tate independent living by severely disabled people.
which provides services directly or coordinates indi-
However, each of them is different to the extent that
rectly through referral services those services that are
they provide either ongoing or transitional services,
designed to assist severely disabled individuals to in-
that they are either residential or nonresidential, and
crease personal self-determination and to minimize
that they are either controlled by consumers or
unnecessary dependence upon others.
merely provide opportunities for substantial con-
The pure definition of an independent living center
sumer involvement. These fundamental differences
includes a description of a minimum set of services
between programs may seem somewhat subtle and
that must be provided by such a center. These are
unimportant to the uninitiated observer. But to those
housing assistance, attendant care, readers and/or in-
who understand the nuances of the independent liv-
terpreters, peer counseling, financial and legal advo-
ing movement, these differences are extremely signif-
cacy, and community awareness and barrier-removal
icant. In fact, debates related to the importance of
programs. One can see that this definition is some-
these differences between independent living de-
what restrictive and certainly excludes programs of a
votees often arouse emotions and lead to tempera-
residential or transitional nature that are generally
mental outbursts.
considered to be part of the independent living
The differences are not difficult to explain. Some
movement. Therefore, the term "independent living
people believe that independent living programs must
program" evolved to include two other distinct types
be directed by and controlled by consumers in order
of programs. These are independent living residential
to be viable. Other people believe that consumer in-
programs and independent living transitional pro-
volvement on a lesser scale is sufficient. Some people
grams.*
believe that residential programs are institutional,
An independent living residential program is a
segregated, and do not provide an opportunity for op-
live-in program that provides directly or coordinates
timal normalization in the community. Other people
through referral shared attendant services and trans-
believe that these programs are suitable alternatives
portation. Other related services may also be pro-
to institutionalization for severely disabled people,
vided by these programs. An independent living
that they are one step on a continuum of independ-
transitional program is one that facilitates the move-
ence, and that they are not necessarily segregated.
ment of severely disabled people from comparatively
Some people believe that transitional programs are
dependent living situations to comparatively inde-
simply residential programs in disguise, that they are
pendent living situations. The primary service pro-
too much like traditional rehabilitation programs, and
vided by these programs is skill training in such areas
that they do little to insure the long-term support of
as attendant management, financial management, con-
severely disabled people in their communities. Other
sumer affairs, mobility, educational/vocational oppor-
people believe that transitional programs are far dif-
ferent from residential programs in that they force
participants to move into the community after a
*The term independent living program used here is analogous to
the term independent living center as described in Title VII of Public
specified period of time or after the participants have
Law 95-602 (The Rehabilitation Act Amendment of 1978). Inde-
met certain goals. They believe that transitional pro-
pendent living program was chosen for use here because it is a
grams are much more cost effective than other sorts
generic term that subsumes several different types of programs,
including one called a center for independent living. Since independ-
of independent living programs and that they enable
ent living center, as conceived in the early 1970's, has a very
severely disabled persons to live independently in
specific and somewhat limiting definition, it is understood that a
broader definition like that of independent living program was in-
their communities without the need for ongoing serv-
tended by the fathers of the independent living legislation when
ices other than those provided for the general popula-
they referred to centers for independent living.
tion.
170
REHABILITATION LITERATURE
SPECIAL ARTICLE
These differences of opinion should not discourage
tion, or whether the program serves a rural area with
the adoption of any one type of program, but they
a comparatively scattered population. Primary fund-
should lead to questions that may help determine
ing source relates to whether the program is sup-
which type of program is most appropriate to meet
ported mostly by fees paid for services rendered or
the needs of certain groups of severely disabled
by grants and donations. It is important to recognize
people in particular communities. It may be and in
that these features are not exclusive and that they
fact has been the case in some instances that all three
simply constitute dimensions across which programs
types of programs are needed in a given community.
may vary. Also, the descriptions given above for these
Instead of competing with one another for promi-
dimensions are not complete, but they are sufficient
nence, these three types of programs should comple-
to allow for constructive discussion. With this in
ment each other in a practical approach.
mind, let us compare some of the existing independ-
ent living programs in the United States according to
Variable Dimensions of Independent Living
the definitions and dimensions listed above.
Programs
Existing Program Models
Besides the basic differences between programs de-
scribed above, several other variable dimensions of
Although the Center for Independent Living in
programs can be identified. These dimensions may be
Berkeley, California, has most often been cited as the
useful in describing programs and in determining how
epitome of an independent living program, we have
those programs fit into any given community. The
chosen here to examine two other lesser known pro-
dimensions used by ILRU in its 1978 program survey
grams with equally outstanding characteristics. To
and described by Pflueger in her monograph Inde-
begin with, let us examine the Ann Arbor Center for
pendent Living2 are: service setting, service delivery
Independent Living (CIL) in Michigan and the Com-
method, helping style, vocational emphasis, goal
munity Service Center for the Disabled (CSCD) in
orientation, and disability type served. In addition to
San Diego, California.
these, several other dimensions may be important.
Both the Ann Arbor CIL and CSCD are located in
They are: program sponsor, management structure,
highly populated urban areas. They each serve over
geographical setting, and primary funding source.
500 clients per year drawn from all major disability
Service setting relates to whether a program is resi-
types. They each report that their services are equally
dential or nonresidential, like a store-front operation.
distributed among male and female clients and that
Service delivery method relates to whether services
they have at least a 25 percent representation of
are provided directly by the program or indirectly
nonwhite persons among their clientele. Their staffs
through referral to other agencies. Helping style re-
are each composed of more than 50 percent disabled
lates to the extent to which consumers are involved in
persons and they each provide both professional and
the operation of the program. Vocational emphasis
peer counseling services. Their primary services re-
relates to whether or not vocational goals are prereq-
late to advocacy, community consultation, and com-
uisites for participation in the program. Goal orienta-
munity education, although they both provide referral
tion relates to whether the program is transitional or
to housing, attendants, and transportation. Both pro-
ongoing. Disability types served relates to whether
grams utilize multiple funding sources-including
the program focuses on people with a particular type
federal, state, and foundation grants-as well as indi-
of severe disability or whether the program provides
vidual and group donations. They both depend on
services for people with many different disability
funding from state agencies as their primary source of
types. Program sponsor relates to whether the pro-
income and their annual budgets both exceed
gram is sponsored by an existing health service, social
$100,000. In spite of substantial funding, both pro-
service, or rehabilitation service agency in the com-
grams list inadequate funding among their major
munity, or whether it is a comparatively new and in-
problem areas. Both the Ann Arbor CIL and CSCD
dependent entity. Management structure relates to
in San Diego are independent living centers in the
the amount of control that the board of directors of
truest sense of the word.
the organization has compared to the control main-
The ILRU project is presently in the process of
tained by the executive director, or to the power of
updating its 1978 survey of independent living pro-
the director compared to that of the staff. Geograph-
grams. Data obtained thus far seem to indicate that
ical type relates to whether the program serves a
the number of independent living programs in the
primarily urban area with an extremely dense popula-
United States has nearly doubled during the two
years since the original survey was done. There are
²Pflueger, Susan Stoddard. Emerging Issues in Rehabilitation: In-
now more than 20 programs in California alone.
dependent Living. Washington, D.C.: Institute for Research Utiliza-
There are at least five programs each in Massachusetts
tion, 1977.
and Texas, and at least three programs each in New
JULY-AUGUST, 1980, Vol. 41, No. 7-8
171
SPECIAL ARTICLE
York, Kansas, Michigan, and Washington. By far,
employ an executive director to manage day-to-day
most of the existing programs are located in urban
program activities. A few programs are affiliated with
areas. In fact, only three truly rural programs have
existing rehabilitation agencies, such as comprehen-
been identified. In the past, many programs were lo-
sive rehabilitation centers, voluntary sociali service
cated adjacent to university campuses. However,
agencies like Goodwill and Easter Seals, and state vo-
more of the newer programs seem to be locating away
cational rehabilitation agencies. These programs are
from campuses in order to better serve the commu-
generally managed by a project director who is
nity at large. Residential and nonresidential programs
employed by the sponsoring agency and who reports
seem to be equally represented among existing pro-
to an advisory committee that includes strong con-
grams. In fact, several programs provide comprehen-
sumer representation.
sive services in both residential and nonresidential
Almost half of the existing programs rely on four
settings.
or more sources of income to support their programs.
It is clear that nonresidential programs serve more
The older programs seem to rely more on direct or
persons on an annual basis than residential programs.
third party income for services rendered while the
In fact, nonresidential programs average serving more
newer programs rely more on grants from federal,
than 500 persons per year, while residential programs
state, and local governments. Donations by individu-
average serving fewer than 50 persons annually. More
als and corporations seem to be a secondary source of
than two-thirds of the existing programs serve per-
funding for most programs, and foundation grants are
sons with different types of disabilities. Of those serv-
of incidental note at this point. Almost two-thirds of
ing a single disability type, spinal cord injury is the
the existing programs depend on funds from state re-
type most often served. There are twice as many in-
habilitation agencies as their primary source of sup-
dependent living programs with an ongoing orienta-
port. Although nearly as many programs use federal
tion as there are transitional programs. In fact, very
funding as one source of income, very few of them
few of the recently established programs are transi-
depend on that as a primary source. About one-fourth
tional. With respect to vocational emphasis, the pro-
of all existing programs have only one source of fund-
grams are almost evenly divided. About half of them
ing. On the other hand, nearly one-fourth of the pro-
have a strong vocational focus while the other half
grams utilize at least five sources of income and, with
have only an incidental focus on vocational issues.
one exception, each of these programs serves more
About half of the existing programs have a staff
than 500 persons annually.
consisting mainly of handicapped individuals, and the
As one might suspect, most of the older pro-
other half are staffed by a majority of nonhandi-
grams-those established in or before 1976-are the
capped persons. It should be noted, however, that
biggest programs. Also, as one might suspect, the
those programs which are not staffed mainly by
programs serving the most people generally have the
handicapped people generally are directed or man-
largest budgets and serve the largest communities. In
aged. by handicapped individuals. Most of the pro-
many respects, the older programs may be described
grams provide both direct services and referrals to
by the adjective "multi." They are usually multiser-
other agencies. A few of the older programs provide
vice, multidisability, multifunded, multifocused, mul-
only direct services with no referrals. However, most
tidimensional, and multifaceted.
of the recently organized programs place a tremen-
dous emphasis on information and referral type serv-
ices. This seems to reflect a growing concern for bet-
An Hypothetical Program Model
ter utilization of existing services in the community.
Information gathered about the successes and fail-
It also reflects a growing emphasis on advocacy,
ures of existing programs may be useful in planning
which leads to the expansion of existing social service
new programs. If one asked what kind of independent
and health service programs in the community to in-
living program was best, the answer given by most
clude severely disabled persons among their clientele.
experts in the area would be that it depends on the
The most frequently cited service delivered by
needs of disabled people in any given community, on
existing independent living programs is residential
the availability of existing community resources, on
service. The next most frequently cited primary serv-
the physical and social makeup of the community, and
ices are peer counseling and independent living skills
on the goals of the program itself. Nonetheless, some
training. Other services frequently cited as primary
generalities can be stated.
are attendant care, advocacy, financial aid counseling,
It appears without a doubt that judicious incorpora-
transportation, social and recreational activities, and
tion of the major tenets of the independent living
mobility training. Most existing programs are recently
movement lead to successful programming. That is,
organized, private, nonprofit entities that are gov-
provisions must be made for the substantial involve-
erned by a corporate board of directors who in turn
ment of consumers in program planning, manage-
172
REHABILITATION LITERATURE
SPECIAL ARTICLE
ment, operation, and monitoring. Programs should be
additional dollars will be spent this year (FY 80) from
as community based as possible. The services that
Title VII appropriations, with most of this used to
they provide should be directly related to the needs
establish new programs, it is not beyond imagination
of the community they serve. They should directly
that funding would be available in 1985 to support
provide a set of core services not available to disabled
the anticipated 300 to 500 programs.
persons elsewhere in the community, and they should
Again, judging by recent trends and the prevailing
coordinate and provide referral to existing services in
feelings of experts in the area of independent living,
the community. They should provide a combination
one may predict that future programs will emphasize
of ongoing and transitional services. These transi-
consumer control, be community based, and avoid
tional services are generally called independent living
providing residential services. With additional fund-
skills training and may be provided in a temporary
ing, one may also predict the establishment of several
residential setting.
programs in the same metropolitan area. These pro-
Programs should establish straightforward man-
grams will be of several different types-some transi-
agement policies modeled after other successful
tional, some ongoing. Also, they may focus on dif-
community based social service programs. They
ferent primary disability types. For example, in a city
should maintain sound fiscal management and adopt
with several programs, one program may provide
effective accounting procedures. They should obtain
services primarily for mentally retarded adults,
consultation and assistance from existing programs
another program may provide services primarily for
and other sources of technical assistance, and they
mobility impaired individuals, and still another pro-
should establish built-in program evaluation and out-
gram may provide services primarily for persons with
come evaluation methods. They should develop mul-
communication or visual disorders.
tiple sources of funding, and they should be account-
With a growing movement toward independent liv-
able to both funding sources and their own clientele.
ing by severely disabled people, there will be a
They should develop strong supportive relationships
greater demand for integrated barrier-free accommo-
with existing local and state rehabilitation agencies, as
dations. More public attention and political clout will
well as the private sector in their own communities.
be focused on the elimination of work disincentives,
They should struggle to avoid compromising idealistic
the provision of barrier-free public transportation,
principles in the face of pragmatic concerns. Finally,
and the provision of community wide attendant care,
they should strive to be inventive.
reader, and the interpreter referral programs.
With the rapid expansion and proliferation of inde-
pendent living programs, more programs will fail due
Future Trends
to overexpansion and mismanagement. It is possible
We have explored several different prototypic
that this will lead to an effort by the federal govern-
models of independent living, reviewed the major
ment to impose strict controls on independent living
similarities and differences between programs, dis-
program funding, program standardization, or
cussed some philosophical bases of the independent
perhaps even licensing requirements. This rapid pro-
living movement, briefly examined a few existing
gram development may also lead to the evolution of a
programs, looked at the present status of independent
type of independent living specialist or professional
living program development, and stated several
independent living program staff person. If these
generalities relating to program development and op-
changes come to pass, the likelihood of institutionali-
eration. At this point, we shall attempt to glimpse
zation is inevitable, and the independent living
into the future by examining recent patterns and
movement will undoubtedly wind up a part of the
trends in the development of independent living pro-
nursing home establishment, the MHMR establish-
grams.
ment, or something analogous to those.
It appears as though the present trend to establish
In conclusion, let us look once more at the present
new programs will continue for the next two to five
state of development of independent living programs.
years until each state has on the order of five to 30
Right now, in the United States, nearly 8,000 severe-
independent living programs. This means that by
ly disabled people are living more independently than
1985, there may be as many as 300 to 500 programs
they were three years ago. These are persons who
in the United States. Based on the fact that there are
have been and are being served by independent living
now about 65 active programs in the United States
programs. At the present growth rate, by the year
with budgets averaging about $100,000 per year each,
1985 as many as half a million severely disabled
it appears as though about $5.5 million is being spent
people may be living comparatively independent
on independent living programs today. About $2 mil-
lives, integrated throughout our communities as a re-
lion of this is from federal appropriations through
sult of services provided by independent living pro-
Title VII. Furthermore, given the fact that 10 million
grams.
JULY-AUGUST, 1980, Vol. 41, No. 7-8
173
Special Article
A Tale of Two Lives
Lex Frieden
Preface
in an electronics engineering program offered there.
I
HAVE LOOKED at life from two sides of a many-sided
fence. I do not pretend to know everything about either
N
ovember 20, 1967, was the last day of school before
side, but I have experienced a rather unique situation, and
Thanksgiving break at O.S.U. That day I had classes
I believe I can, by sharing my experience, contribute a
from 7:30 in the morning to 5:30 in the evening. After
valuable perspective to the viewpoint of others.
classes, I went with a friend to a fraternity rush party and
then returned to the dormitory. There, I encountered four
other fellows with whom I went for a car ride at about
Mr. Freiden, after graduating from the University of Tulsa
11:30. That night, as we were returning to the dorm, we
in December, 1971, continued with graduate studies. He
had a head-on collision with another car.
received an assistantship to continue his studies in psy-
I was stunned momentarily but immediately regained
chology at the University of Houston in the fall of 1972.
consciousness and, as everyone scattered from the car, I
discovered that I could not move!
M
an has often contemplated the possibilities of living
Since we were all conscious, the ambulance company
twice, but few men have ever realized the opportuni-
took us to the university infirmary where a single doctor
ties of their dreams. Although it seems like a nightmare at
and an incompetent nurse tried to patch up everyone.
times, I have realized an opportunity few men dare to
The driver of our car had several broken ribs, another
imagine.
boy had a broken leg, and two others had severe lacera-
In the spring of 1967, I graduated from Alva High
tions. Since I was the only one there who was not bleeding,
School, Alva, Okla., after a fairly successful childhood
I was the last to be examined.
filled with a variety of enlightening experiences. I was a
When the doctor discovered I was paralyzed, he imme-,
good student and consequently had the privilege of leading
diately diagnosed my injury as spinal shock At this,
my class as valedictorian. I was also fortunate to have the
point, he began taking x-rays in an effort to determine the
confidence, of my peers who selected me as Most Likely to
extent and location of the injury. The startled expression
Succeed.
on Dr. Jenkin's face as he looked at the x-rays somehow
I was able to participate in a wide variety of school
signaled the severity of my injury.
activities, including music, drama, athletics, and student
He immediately telephoned Don Rhinehart, M.D., a
government. I played first chair trumpet in the band, had
neurologist at the Oklahoma University School of Medi-
the lead in the junior and senior class plays, and was cap-
cine. Dr. Rhinehart agreed to meet me at St. Anthony's
tain of the golf team. Probably my most exciting experi-
Hospital in Oklahoma City. I was still conscious at the
ence during this time was my selection as the Oklahoma
emergency room, so Dr. Rhinehart took some more x-rays
representative to the Student Burgesses in Williamsburg,
before moving me to the intensive care unit, where I was
Virginia.
to be in critical condition for the next 10 days.
As a youngster, I was very active in the Boy Scouts,
My recollections from that period are clouded by much
earning Eagle and attending two National Jamborees in
pain and the heavy drugs used to subdue it.
Colorado Springs and Valley Forge, Pa. Later, I became
When I awakened, the day after the accident, my mother
a camp counselor and spent three summers teaching boys
and father were there with Dr. Rhinehart and an ortho-
how to row boats, paddle canoes, and swim.
pedic surgeon, Dr. Spencer. My head was strung in a
I always managed to keep busy, and the summer of my
clumsy harness and tied to sixty pounds of weights. This
senior year is a good example. Besides lifeguarding at a
traction or constant pressure was to remain on my spine
municipal swimming pool, I worked part time at a com-
for the next six weeks.
mercial radio station, coached a Little League baseball
Dr. Rhinehart said my neck had been broken by
a
team, played in a rock band, and earned six hours of
whiplash at the fifth vertebra, but he could make no prog-
credit at Northwestern State College.
nosis until he did laminectomy or exploratory surgery.
After all that, I was ready to make my way off and
Dr. Spencer was to do a bone transplant from my hip to
conquer the great university. I accepted a President's
my neck and fuse a new vertebra in place of the that
Scholarship from Oklahoma State University and enrolled
had been shattered. They needed to operate as soon as
JANUARY, 1973, Vol. 34, No. 1
7.
SPECIAL ARTICLE
possible to keep the splintered bone from severing the
My confidence and faith began to wane, and I slipped
nerves to my heart and lungs. They had to wait three
into a deep state of mental depression. Christmas came
days for the hemorrhaging to stop in my neck and for
just in time to pull my spirits out of the fire.
the swelling to subside.
For the first time in my life, I realized the true value of
friends. My home, Alva, is a small farming community of
O
n the day of surgery, everyone from a Methodist min-
seven thousand in northwestern Oklahoma, but no city in
ister to a Catholic priest came in to pray for me. I
the world could extend as much love as those people did
was drowsy when the orderly carted me into the operating
to me.
room, but I remember the glint of the powerful lights on
I received literally trunkfuls of cards, letters, and gifts
the stainless steel fixtures in the room. Six hours later I
from my friends and, though often misused and ignored,
emerged unconscious, fused, and inspected.
the sentence, "Our love and prayers are with you," means
The next several days were touch and go, but gradually
hope to me. Those people gave me a portacolor television
I improved to the point where I could be transferred to a
for Christmas, but, not only that, they gave me the courage
private room.
to face tomorrow.
My last day in intensive care was really quite an experi-
The following poem was written for me by one of my
ence. It was the first day I had been conscious enough to
friends and helps describe the kind of support I received
be aware of much going on around me. The room was
from the people of Alva.
always lighted so that you could not tell night from day,
and it was filled with the constant and resounding din of
A small city (a little town?) is made
respirators and heart pumps. That day I saw one man die
up of
of stab wounds and another die of a heart attack. It would
Many business and professional people
be hard for a healthy person to remain so under such con-
all fierce competitors;
ditions, but it seems to be a highly effective method of
Many churches, each with congregations
maximum care.
convinced
I was confined to a Stryker Frame rotating bed for six
That they alone possess the master key
weeks after the operation, and during this time I was
to Heaven;
rolled from my stomach to my back every two hours. To
turn on that contraption was a horrifying experience
Stubborn political groups who think
every time. The procedure required two aides to-strap me
that there is only their side of
in between two panels and then flip the bed, SO that I
any question;
landed on the opposite side. It did not always work, and I
Little cliques and clubs, exclusive
dreaded the ordeal.
and united
This constant rotating was complicated by the presence
For their personal projects and pleasures;
of a set of head tongs drilled into my skull On these
tongs were hung the weights that created the traction on
Rows of houses called "homes"
my spine. Twice the tongs were pulled from my head and
Each centered on "me" and "mine."
twice they were replaced.
But/when one family enters a valley
Many of these terrifying experiences may seem to have
between life's mountaintop experiences
been unbearable, but my state of mental awareness was so
All of the business people, professional
vague that I did not care what was happening. By the time
people, church people, political
I could actually sense the pain, my body was already condi-
groups, cliques, clubs, and families
tioned to it.
Flow together as at a given signal
and form one strong unit,
I was not until a few days before Christmas that I re
alized the potential consequences. of my injury. One
Expressing love and faith and
night I happened to watch a late movie on television about
determination
a soldier who had been shot in the neck and paralyzed
That with heaven's help "we," not
Until then, I had successfully ignored the implications of
just "he" or "she" or "they,"
reality, but now I had to face the truth. The problem was
SHALL PREVAIL
I did not know the truth, and no one else seemed to either.
This miracle of molding a unit of
I asked everyone, but no one could tell me when I would
strength
get over the paralysis I assumed it would disappear as I
Is indeed one of God's rich blessings
recovered from the surgery, but still could not move any-
Both for those who give and for those
thing but my eyes, and that was very discouraging
who receive.
8
REHABILITATION LITERATURE
SPECIAL ARTICLE
By the middle of January, I had progressed to the point
respected by his patients and associates. After a compre-
that I could be moved and the doctors suggested that I
hensive physical examination and evaluation, Dr. Carter
be taken to a rehabilitation center. After much investiga-
started me on an individualized program of intensive re-
tion, deliberation, and many arrangements, I was flown
habilitation.
to the Texas Institute for Rehabilitation and Research
I spent two hours a day in physical therapy, where one
(TIRR) in the Texas Medical Center in Houston.
of eight therapists gave me both active and passive ex-
ercises. By the middle of February, I could move my head,
T
here are very few good rehabilitation centers in this
shoulders, and arms. There were very few active nerves
country, and among them TIRR is highly regarded.
remaining that I could not control.
The attitude of William Spencer, M.D., director of the in-
Occupational therapy occupied an hour of my time
stitute, is characteristic of the progressive outlook of the
each day. Here, I learned to utilize those muscles that had
institute. A leader in the field of rehabilitation, Dr. Spencer
been restrengthened. The therapists showed me how to
believes that, "We must try to organize, co-ordinate and
substitute working muscles for others and to apply them
manage our efforts to assist the handicapped from his
as replacements in constructive tasks.
perspective which is, after all, our perspective."
After consultation with a leading bone specialist, Dr.
Upon arriving at TIRR, I was taken to a medium care
Carter removed the brace that helped support my neck
ward, which I shared with five other boys. After a brief
after the tongs were removed: Also, he prescribed an ex-
physical examination and a bite to eat, it was time to get
ternally powered orthosis, or assistive device, for my right
acquainted.
hand.
On my right was Ronnie, a swell guy from Austin, Tex.
The powered orthosis was first developed at TIRR by
We were about the same age and had about the same in-
Thorkild Engen, C.O., director of the orthotic department.
juries. Ronnie was hurt a few months before I was, in a
The device utilizes a tubular muscular substitute fixed on
diving accident. To my left was Bardot. He was a New
an arm or hand brace and inflated with carbon dioxide.
York boy who had had poliomyelitis as a youngster and
Activated by a specially designed control valve, the orthosis
had experienced several complicating accidents and ill-
allows me to grip a number of things, including pencils,
nesses since then. Bardot may have been a bit eccentric,
pens, and eating utensils. After being totally dependent for
but I enjoyed his piercing questions and natural curiosity.
so long, it is great just to be able to feed yourself again.
Across the room was Scott. Scott had been in the center
longer than the rest of us; although younger, he was the
he Institute maintains an excellent counseling and
veteran among us. He, too, had suffered a broken neck in
T
social services staff They try to assist the patient in
a car wreck. Next to Scott was Richard, a boy from
adjusting his outlook on life to fit his new role. A person
Louisiana whose neck was broken when he dived into the
must command some degree of self-confidence if he is to
shallow end of a swimming pool. Richard's rehabilitation
find his place in society, and to do this the handicapped
had been set back several times by severe infections.
person must be able to perceive his norms and goals in
Finally, there was Cowboy. Cowboy was a bronc rider
the context of his own ability
whose head was smashed against the gate when he was
I was in a class with 14 other patients that met several
bucked off his horse as it left the chute at a rodeo. He
times a week to study and discuss the problems of our
was married and had children, and he loved country
disabilities. We had the opportunity to visit with special-
music.
ists from all fields of rehabilitation. These included the
It had been a busy day, and I was just about to get
real specialists, people who had been hurt like us and who
some sleep, when an orderly came through the door push-
had reentered the mainstream of life as productive and
ing a huge yellow cylinder. It was the first time I had ever
contributing citizens
seen an iron lung up close, and I could not imagine what
Dr. Carter met with us on several occasions. He ex-
it was. The orderly put Bardot inside it, plugged it in, and
plained that most of our injuries were the result of spinal
turned it on. Without thinking, I imagined they had one
cord lesions. These lesions occurred when the bones in our
of those "tanks" for each of us, and this scared me. Fright-
necks were broken, and we were all paralyzed to different
ened as I was, I eventually fell asleep to the bru-um, bru-
degrees, depending upon the point at which our spinal
um, bru-um of the compressor on Bardot's tank.
cords had been severed.
When a nerve is; cut and hemorrhaging occurs, scar
T
he following day I met my doctor, R. E. Carter. A
tissue usually forms. If the scar tissue has actually sealed
spearhead in the efforts of the Institute to develop the
itself across the spinal cord, it is very unlikely that those
finest spinal cord center in the country, Dr. Carter is highly
muscles activated by nerves extending below the severed
*Spencer, William. Expectations for the Future. Promethean.
point will be able to move voluntarily. This set of circum-
Oct., 1970. 8:4:2.
stances creates a more or less permanent disabling paral-
JANUARY, 1973, Vol. 34, No. 1
9
SPECIAL ARTICLE
ysis. Naturally, the higher the injury is, the more complete
It is difficult to return to an old setting as a new or differ-
is the resulting paralysis. Since my neck was broken very
ent person. People are not sure how to accept you and
near the top, I am almost totally disabled and, having little
they do not know what to expect from you. They are often
use of my arms, I am classified as a quadriplegic.
overcautious and consequently awkward, but the people
of Alva did their best to make me feel at home.
I
spent most of my spare time visiting with my room-
Two weeks after I got home, I was asked to preside at
mates, but occasionally I took advantage of the recrea-
the initiation ceremonies of my high school's National
tional therapy program. The Institute believes, and justi-
Honor Society. As the curtains were drawn on the stage,
fiably so, that recreation is a fundamental unit of total
I received a standing ovation. I will never forget that mo-
rehabilitation. The program provides not only games,
ment, and the only way I can begin to repay those people
parties, and special programs but also frequent field trips
for their encouragement is to do my best to overcome my
to selected social events. While I was there, I saw my first
handicap.
hockey game, my first soccer game, my second, third, and
I was determined to return to school, so without wast-
fourth pro baseball games, and my first formal civic ballet.
ing any time I enrolled in summer school at Northwestern
I am convinced that these field trips are very important
State College. After that I had the pleasure of visiting
from the standpoint that they keep the patient in touch
Mexico with four of my lifelong friends. We spent two
with the outside world so that he does not develop an in-
weeks in Mexico City and Acapulco and had a wonderful
stitutionalized concept of life.
time. Those fellows convinced me that I could go just
Before I could participate in any of these special events,
about anywhere and do just about anything I wished.
I had to build up my stamina in general and my sitting
Our family moved to Tulsa in the fall of 1968, since
tolerance in particular. To assist me in doing this, I was
my father had been promoted to vice president of sales for
started on a controlled weight-bearing program. Simply,
Oklahoma Natural Gas and was transferred to the main
this means standing. Since I could not support my own
office. I was sorry to leave all my friends, but I was glad
weight, I was strapped to a tilting board or standing board
to have the opportunity to study at the University of Tulsa.
and gradually raised to increasing degrees. After being
This story would be incomplete if I ended it without
prone for so long, your body has to slowly recondition it-
mentioning my number-one supporters, my family. It is
self to the vertical plane. In the beginning, my therapist
extremely difficult to describe or even list all the help and
monitored my pulse and blood pressure so that I did not
encouragement they have given me. In this day of pros-
go up too quickly.
perity and independence, the family is often disregarded,
The method used to build sitting tolerance is similar to
but, if I succeed in reaching any of my goals, it will be in
that of standing. To start with, I was placed, for a few
no small part a result of my family's faith in me.
hours each day, in a wheelchair with a reclining back.
Gradually, over a period of weeks, the back of the chair
It has been three years since I was hurt, and I have not
was raised to the normal position. From then on, it was
yet completely adjusted to my new role in life. At least
simply a matter of sitting a little longer each day
now, I can look at the future with a sense of security in
By the end of March, I had progressed sufficiently so that
knowing my own goals. I plan to continue my education,
there was no immediate danger of medical setback. At
working towards a doctorate in psychology, with the hope
this point, I was transferred to a semiprivate room on a
that I may be able to serve my fellow man.
minimum care station. It was here that I came to know
My story has not ended, and I do not intend it to end
Steve.
here. I believe my future is just as promising now as it
Steve had broken his neck in a motorcycle accident two
was before I was hurt. I may be handicapped, but any
days before my accident. Our injuries were almost identi-
roads that are closed now have simply led me to new
cal and our attitudes complemented each other. Steve was
horizons.
married, and his wife, Lyn, was a beautiful girl. Their
It would have been easy for me to have stopped living
home was in Florida, where Steve was a medical student.
after my accident, but, instead, I chose to accept my expe-
Besides sharing a room, Steve and I shared our accom-
rience as an enlightening adventure rather than a disastrous
plishments, our problems, our hopes, and our dreams. We
ending.
came to understand each other as friends seldom do. We
ACKNOWLEDGMENTS
were released from the hospital on the first day of May.
Steve and Lyn went back to Miami and I went back to
My sincere thanks to Dr. Nancy Feldman, for giving me the
Alva.
incentive to write this paper, and to my sister, Brooke, for helping
me type it.
10
REHABILITATION LITERATURE
Ach me. Ai of
ESEN TO
LEX FRIEDEN
FOR C STANE GACC PLISH CNTS
AND FORM 'CE
1990 s 91
HOUSTON MAYOR'S COMMITTEE
Houston Mayor's Committee
for Employment of People
with Disabilities
FOR EMPLOYMENT OF PEOPLE WITH DISABILITIES
presents this
Certificate of Appreciation
to
Lex Frieden
for outstanding achievement
as host for the 1992
"Focus on Abilities" Show.
OF
Bob Lanier
CITY
Robert J. Lanier, Mayor
Peter Julish Chairman
HOUSTON MAYOR'S COMMITTEE
Houston Mayor's Committee
for Employment of People
with Disabilities
FOR EMPLOYMENT OF PEOPLE WITH DISABILITIES
presents this
Certificate of Appreciation
to
Lex Frieden
for outstanding achievement
as host for the 1992
"Focus on Abilities" Show.
&
Bob Lanier
Peter Julita Chairman
Robert J. Lanier, Mayor
HOUSTON MAYOR'S COMMITTEE
Houston Mayor's Committee
for Employment of People
with Disabilities
FOR EMPLOYMENT OF PEOPLE WITH DISABILITIES
presents this
Certificate of Appreciation
to
Lex Frieden
for outstanding achievement
as host for the 1992
"Focus on Abilities" Show.
OF
Bob Lanier
ARE 0
Robert J. Lanier, Mayor
Chairman
TEXAS MEDICAL CENTER LIBRARY
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AUT
TI: AMERICAN REHABILITATION
UTHSCSA
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CITATION: 1978 ? (JL-AUG): JULY-AUG
ast
MAILED
AUTHOR OR AUTHORS: FRIEDEN-L
TITLE OF ARTICLE: INDEPENDENT LIVING
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PROTECTED BY COPYRIGHT LAW
NOTICE: THIS MATERIAL MAYBE
(TITLE U.S. CODE)
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) arfd 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.
comunity clinics
recreation
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
/
Independent
CRISTS
for
REHABILITATION
Tehab
Family
Centers
Living
employment
career development
fully accessible communities
minimizing the handicapping aspects
Femily
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
0-19
5
06.0%
College/West. Many people with dis-
20-29
33
39.8
abilties work as volunteers within the
30-39
19
22.9
organization. All major executive of-
40-49
3
3.6
fices and the majority of executive
50-59
5
6.0
board seats are held by severely dis-
60+
18
21.7
abled people.
1
Most independent living programs
83
100.0%
and centers (ILPs) developed
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
undetermined
8
9.6
be involved in the development of
-
services that are provided to meet the
83
100%
needs of disabled people; that the
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
Arthritis
4
3. They have major consumer
Chronic pain
3
involvement.
Most programs are managed or di-
Cancer/leukemia
3
rected by the people with severe dis-
Paralysis
20
Old age
4
ability and many of the staff members
Other
12
are disabled.
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
egory of disability. (However, the
Independent living programs have
awareness within the disabled person
started all over the country. Their
ability to provide various services is
of his potential for life of greater par-
restricted by eligibility requirements
popularity is due to their responsive-
ticipation and involvement.
ness to the needs of the severely dis-
associated with various public pro-
5. They provide a range of services.
abled person. In addition to this
grams.)
They focus on services needed to
grass-roots development, other nota-
6. Service provision throughout the
move people into the mainstream. In
ble events- provide landmarks in the
rehabilitation process.
California, ILPs vary in the number
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
phase of rehabilitation, but are pro-
pending on the needs of their com-
clearly defined expression of need for
vided, as needed, for life.
munities. All of them, however, do
services, legislation, and resources.
provide certain core services, includ-
7. They provide new training and
These landmarks, in the articulation
employment opportunities for people
ing: community development; peer
and development of independent liv-
with severe disabilities.
support and counseling; attendant,
ing, include:
Peer counseling positions and other
reader, and interpreter referral; and
The comprehensive Needs Study
employment within the organization
personal and financial advocacy.
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 recent 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
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UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER LIBRARY
4,729
OKLAHOMA CITY OK
Independent Living in the U.S.
And Implications for Other
Countries
by Lex Frieden
Background
Independence and freedom are
After World War II, when people
by causing providers of all sorts of
among the basic tenets of the
became more sensitive to human and
goods and services to be more respon-
American way of life. Our country was
civil rights, the contradictions between
sive and responsible to the users of
founded upon the principles stated in
historical philosophies and ways of
their products. Citizen input was wide-
the Declaration of Independence, and
treating disabled individuals became
ly sought by both private and public
we celebrate Independence Day, July
more apparent. Disabled people, their
policy makers and program admini-
4th, every year.
families, and professional rehabilita-
strators in all fields, including rehab-
We value every person's right to
tion workers began to express their frus-
ilation, where disabled people were at
play a role in shaping their own
trations, and a growing group conscious-
last called upon to represent them-
destiny, and we make great sacrifices
ness demanded progressive change in
selves. Finally, disabled people began
to guard and protect our freedom.
policies and programs. New theories
to relate to independence as a philoso-
Thus, the extension of the concepts
relating to the treatment of disabled
phical concept entailing not only
and philosophy of freedom and inde-
people began to emerge, and model pro-
physical access and functional im-
pendence to the treatment of disabled
grams designed to facilitate more inde-
provement or restoration, but also free-
people in our society would seem
pendence by disabled people were pro-
dom of choice and self-determination.
natural.
posed.
Many important changes in the
However, when we examine the stat-
The normalization principle was
treatment of and attitudes toward
us of disabled people, and particularly
adopted from Scandinavia by organiza-
disabled people resulted from the open
when we look back into the past, we
tions working with mentally retarded
discussions and practical implementa-
discover certain attitudes and prac-
individuals during the 1950's. As a
tion of these theoretical concepts and
tices predicated on beliefs which are
result, many group homes and day
idealistic principles. The de-institution-
centers were established as alterna-
ril
contradictory to those of independence
alization movement expanded and
and freedom. We find that disabled
tives to large institutions. In the early
vic
spread to groups of disabled people
people have been thought of and
1970's, several new principles and
other than the mentally retarded. The
ex
treated as helpless children. They have
ideas converged to effect major
Equal Rights movement led to strict
changes in legislation and policy
19
been sheltered, protected, and patron-
legislation against discrimination and
ized. They have seldom been given an
relating to disabled people.
encouraged affirmative action by both
pe
opportunity to speak in their own
The concept of normalization for
the public and private sectors of socie-
Ca
disabled people had led to de-institu-
Inc
behalf. They have been segregated,
ty in removing barriers to disabled peo-
(Th
and they have been institutionalized.
tionalization for some groups, and had
ple in employment, education, housing.
They have been discriminated against,
been linked to concepts of equality,
Re.
transportation, recreation, and so
both intentionally and unintentionally,
consumerism, and independence. The
forth.
2
Bo
and they have been deprived of certain
normalization principle suggested that
(B(
The consumerism movement brought
rights.
disabled people should be treated in
are
disabled people into the decision-making
Some disabled people have been forced
the least restrictive environment possi-
Liv
process and led to the formation of self-
to stay at home and live with their
ble and that they should be helped to
S
help, advocacy, and political action
parents long after becoming adults,
move from levels of dependence to
groups at local, state, and national
op}
because the services they needed to be
those of less dependence. De-institu-
the
levels. Some of these groups joined
comparatively independent were not
tionalization was a means of accom-
gra
together to form powerful coalitions
available in the community. For sim-
Sta
plishing this goal.
capable of influencing policy at the
ilar reasons, other disabled people have
foci
The Equal Rights movement by dis-
highest levels. 3
been forced to live in institutions
abled people was patterned in many
In the early 1970's, the Independent
ing
where they had few choices to make
faci
ways after a similar movement by
Living movement became more than a
even simple decisions like what to eat,
black people to overcome discrimina-
by
confluence of ideals and philosophies.
what to wear, and when to go to bed.
tion and segregation a decade earlier.
por
It manifested itself in several separate,
Even those disabled people who have
Many disabled people considered
unc
yet parallel, efforts to develop service
overcome the barriers to independence
themselves to be members of a minori-
whi
programs which were based on Inde-
have discovered that they cannot bene-
ty group, related not by color or na-
pendent Living principles and designed
fit from some of the facilities and serv-
tionality, but by functional limitation
to facilitate independent lifestyles for
Livi
ices which their tax dollars have built
and similar needs. Consumerism was
and operate.¹
severely-disabled people. These were
the
having an impact on the whole society
in
community-based programs run prima-
H
10
NOTICE: This material may be protected by
copvright Title 17. U. S. Code)
Rehabilitation/WORLD
Fall
POLITICAL
EXCLUSION
LIBERTY
EMPLOYMENT
EXCLUSION
DUE
HOUSING
EXCLUSION
EDUCATION
EXCLUSION
SOCIAL
PREJUDICE
SEXUAL
EXCLUSION
RECREATIONAL
EXCLUSION
d
id
n-
id
rily by consumers and set up to pro-
Definitions - A Common
le
vide services frequently left out of the
Ground for Understanding
development, comparison> and expan-
existing human service network.
sion of the Independent Living move-
ne
In 1978, the Independent Living
There were three such programs in
ment as it relates to service programs. 5
ct
Research Utilization project at The In-
1974. These were the Center for Inde-
stitute for Rehabilitation and Research
th
pendent Living (CIL) in Berkeley,
(TIRR) in Houston, Texas, undertook
Selections from a Glossary for
California; the Cooperative Living/
the task of developing a definition for
Independent Living
Independent Lifestyles Program at TIRR
'O-
Independent Living which would be ac-
(The Institute for Rehabilitation and
Independent Living - Control over
curate, relevant, and descriptive. In
Research) in Houston, Texas; and the
one's life based on the choice of accep-
SO
constructing the definition, it was also
Boston Center for Independent Living
table options that minimize reliance on
necessary to take into account all of
(BCIL) in Boston, Massachusetts. There
others in making decisions and in per-
the different interests and perspectives
are now more than seventy Independent
forming everyday activities. This in-
represented in the Independent Living
Living programs in the fifty states.
cludes managing one's affairs, partici-
movement. Through an iterative pro-
Since the Independent Living philos-
pating in day-to-day life in the com-
on
cess of review, comment, and revision
ophy continues to be the predominant
munity, fulfilling a range of social
by experts in the area of Independent
theme in developing policies and pro-
roles, and making decisions that lead
ed
Living, working definitions of Inde-
grams for disabled people in the United
to self-determination and the minimi-
pendent Living and several related
States, the remainder of this paper will
zation of physical or psychological de-
he
terms were developed.⁴
focus on the theory of Independent Liv-
pendence upon others.
A set of draft definitions was intro-
ing and the programs developed to
duced at a National Conference on In-
Independent Living Movement - The
facilitate a truly independent style of life
dependent Living in Houston in Sep-
process of translating into reality the
by disabled people. Nevertheless, it is im-
es.
tember, 1978. Here, representatives of
theory that, given appropriate suppor-
portant to bear in mind the historical
ite,
Independent Living programs, state re-
tive services, accessible environments,
underpinnings and the societal context
de-
which led to the present state of affairs.
habilitation agencies, consumer groups,
and pertinent information and skills,
and other government agencies, studied,
severely disabled individuals may active-
ned
Lex Frieden is Director of the Independent
discussed, and endorsed the definitions
ly participate in all aspects of society.
for
Living Research Utilization (ILRU) Project at
and their associated commentary.
Independent Living Program - A com-
ere
the Institute for Rehabilitation and Research
Thus, the following definitions have
munity-based program which has sub-
in Houston, Texas.
become a concrete basis for discussion,
stantial consumer involvement, pro-
LD
Fall/Winter 1981
11
program that provides directly or coor-
Independent Living Programs Today
dinates through referral shared atten-
As illustrated by the definitions,
dant services and transportation. Re-
there are basically three types of Inde-
lated services which increase personal
pendent Living programs: centers, res-
self-determination and minimize un-
idential programs, and transitional
necessary dependence on others may
programs. Each of these are similar to
LIBERT
be provided.
the extent that they are community-
based, have consumer involvement,
Independent Living Transitional Pro-
and provide services designed to
gram - An independent living program
facilitate Independent Living by se-
that facilitates the movement of se-
verely disabled people. However, each of
verely disabled people from compara-
them are different to the extent that
tively dependent living situations to
they provide either ongoing or transi-
comparatively independent living situ-
tional services, and that they are either
ations. The primary service provided
residential or non-residential, and that
by these programs is skill training in
they are either controlled by consumers
such areas as attendant management,
or merely provide opportunities for
financial management, consumer af-
substantial consumer involvement.
fairs, mobility, educational-vocational
Other dimensions along which Inde-
opportunities, medical needs, living ar-
pendent Living programs vary include
rangements, social skills, time manage-
service setting, service delivery meth-
ment, functional skills, sexuality, and
od, helping style, vocational emphasis,
so forth. Additional services may be
vides directly or coordinates indirectly
goal orientation, disability type served,
provided. Transitional programs are
through referral those services neces-
program sponsor, management struc-
sary to assist severely disabled in-
usually goal-oriented and/or time-
ture, geographical setting, and pri-
linked.
dividuals to increase self-determina-
mary funding source.⁶
tion and to minimize unnecessary
At the present time, there are more
Independent Living Services Provider -
than seventy Independent Living pro-
dependence on others.
An organization which provides sev-
grams and many more Independent
Services that an independent living
eral discrete services which can be used
Living service providers in the United
program must provide or coordinate
to increase an individual's ability or op-
States. There are more than twenty
through referral are housing; atten-
portunities to live independently. For
such programs in California, and at
dant care, readers and/or interpreters;
example, a medical rehabilitation facili-
least five programs each in Mas-
and information about goods and serv-
ty may provide out-patient services
sachusetts, Texas, and New York.
ices relevant to independent living.
which are designed to maintain the
Multiple programs also exist in Kan-
Other services that are either provided
physical health of a person who lives
sas, Michigan, and Washington. Most
or coordinated by independent living
independently in the community. How-
of these programs are located in urban
programs include transportation provi-
ever, if the center does not provide or
areas, and most of them serve persons
sion or registry, peer counseling, advo-
coordinate a full set of services includ-
with different types of disabilities.
cacy or political action, independent
ing transportation, attendant care and
Disability types served include spinal
living skills training, equipment main-
so forth, it would be an independent
cord injury, cerebral palsy, deafness,
tenance and repair, and social-recre-
living service provider rather than an
blindness, mental retardation, and
ational services.
independent living program. While an
others.
Note: Custodial care facilities and
independent living service provider
Residential and non-residential pro-
primary medical care facilities are spe-
does not meet the criteria necessary to
grams seem to be equally represented
cifically excluded from the definition of
be classified as an independent living
among existing programs, and several
an independent living program.
program, the services it provides may
programs provide comprehensive serv-
be used or coordinated by an independ-
ices in both residential and non-resi-
Independent Living Center - A com-
ent living program.
dential settings. On the average, non-
munity-based, non-profit, non-residen-
With these definitions in mind, it is
residential programs serve more than
tial program which is controlled by the
important to remember that independ-
five hundred persons per year. Resi-
disabled consumers it serves, provides
ence for us all is an intangible quality.
dential programs serve nearly fifty per-
directly or coordinates indirectly
Not every person is capable of achiev-
sons annually. Most of the programs
through referral those services which
ing total independence in the sense
provide services of an ongoing rather
assist severely disabled individuals to
described here, and not every person
than a transitional nature. Also, most
increase personal self-determination
who is able to achieve it chooses to do
of the programs emphasize informa-
and to minimize unnecessary depend-
so.
tion-type services and refer clients to
ence upon others. The minimum set of
It is also important to reiterate that
other agencies whenever possible.
services that are provided by an in-
Independent Living is not dependent
About half of the programs have a
dependent living center are housing
upon Independent Living programs.
strong vocational focus while the rest
assistance; attendant care, readers,
However, these programs are directly
have only an incidental focus on voca-
and/or interpreters; peer counseling,
related to the Independent Living
tional issues. About half of the existing
financial and legal advocacy; and com-
movement, and one of their primary
programs have a staff consisting of
munity awareness and barrier removal
functions is to support and maintain
mostly handicapped individuals, and
programs.
that movement. Thus, the next section
the other half - are generally directed
of this paper will deal with Indepen-
or managed by handicapped individuals.
Independent Living Residential Pro-
dent Living programs as they exist in
In addition to residential services, the
gram - A live-in independent living
the United States today.
services most frequently provided by
12
Rehabilitation/WORLD
there is no country in the world where
disabled people share the same rights and
benefits, and have the same respect and
responsibility as nondisabled people.
Independent Living programs are peer
grams and the Independent Living
educational, and Independent Living
counseling, Independent Living skills
movement. What are the implications
programs. Where they were treated
training, attendant care, advocacy, fi-
of these programs and this movement
more as children before, they are now
nancial aid counseling, transportation,
for the future and what applications
treated more as adults. Where their
social and recreational activities, and
may they have in other countries? These
mobility training.
views were ignored before, the opinions
questions will be addressed in the fol-
Most of the programs are independ-
of disabled people are now sought by
lowing section.
ent, private, non-profit entities gov-
policy-makers and program adminis-
Conclusions and Summary
trators. Some of these authorities are
erned by a corporate board of directors
who in turn employ an executive direc-
Discussion
disabled people themselves.
So what about the future of the Inde-
tor to manage day-to-day program ac-
As noted, the growth of Independent
tivities. Most of the programs depend
pendent Living movement? It is diffi-
Living Programs has been phenomenal
on funds provided by federal grants as
cult if not impossible to be objective
during the past few years. Although
their primary source of financial sup-
about the answer to this question. In
the rate of growth for these programs
port, and most of them have multiple
order to have a free society, everyone,
may slow somewhat during the next
sources of program income.
including disabled people, must be free
few years, the expansion in terms of
It is difficult to describe a typical In-
to make certain choices. One must be
number of programs, number of people
dependent Living program, because
free, within natural limits, to choose
served, and amount of funding, will
the programs vary to a great extent
his or her own occupation, his or her
continue. In fact, it is expected that
from one to the next. The services
own friends, and his or her own style of
there will be as many as three hundred
which they provide and the way in
living. In the past, disabled people
to five hundred Independent Living
which they are organized depends on
have been denied these choices. In the
programs in the United States by 1985.
the needs of disabled people in each
future, they shall not be.
It is likely that more than one hundred
community, on the availability of ex-
At this point, the implications of In-
thousand severely disabled people will
isting community resources, on the
dependent Living for disabled people
be served by these programs. Finally,
physical and social make-up of the
in other countries and cultures may be
it is possible that as much as one hun-
obvious. The United States has not
community, and on the goals of the
dred million to two hundred million
been alone in its backward treatment
people who operate the program itself.
dollars will be spent on providing Inde-
Perhaps it is sufficient to say that
of disabled people. It is true that a
pendent Living Services to disabled
the way in which these programs are
number of other countries have made
people by 1985.
most alike is in the way they differ
progress and may be ahead of the
Although it is conceivable that all
United States in terms of the services
most from established programs serv-
human service delivery programs may
ing disabled people. That is, Indeped-
they provide to facilitate Independent
eventually become integrated to the
ent Living programs depend on their
Living by disabled people. However,
extent that they provide suitable and
consumers, disabled people, to estab-
there is no country in the modern world
appropriate services for meeting the
lish program goals, while other pro-
where disabled people share the same
needs of disabled people, Independent
grams serving disabled people have
rights and benefits, and have the same
Living programs will still be viable
predetermined goals which the con-
respect and responsibility as non-dis-
sources of peer support, information,
sumer must seek in order to receive
abled people. Thus, the Independent
and education for disabled people.
services.⁷
Living movement has significant im-
These programs are likely to be main-
Independent Living as a program-
plications for every country.
tained as centers of community-wide
matic concept is clearly in an evolu-
With respect to Independent Living
advocacy networks of and for disabled
tionary stage. New programs are be-
programs in particular, groups in some
people. This leads to a significant
ginning every day, and old programs
countries have recently modeled those
point.
are changing as the needs of their
in the United States, and similar pro-
More important than the future of
clientele change. The number of pro-
grams have been operated in other
Independent Living programs is the
countries for years. Nevertheless, it is
grams has grown from three to seventy
future of the Independent Living
in six years. Additionally, the total an-
a mistake to assume that Independent
movement itself. This movement has
Living programs are trans-national or
nual investment in Independent Liv-
already had a substantial impact on
ing programs and services has grown
cross-cultural. Social, political, and
the attitudes of policy-makers and the
from about one-half million dollars na-
economic systems vary dramatically
general public toward disabled people
from one country to another and from
tionally in 1974, to more than eighteen
and the treatment of disabled people in
million dollars nationally in 1981.
one culture to the next. More impor-
the United States. Disabled people are
tantly, the views and needs of disabled
Finally, the number of persons served
now more than ever before involved in
by Independent Living programs has
people vary from country to country
making decisions which affect their
and culture to culture. Therefore, it is
grown from about five hundred in 1974
lives, both programmatically and in-
to more than eight thousand in 1981.
up to disabled people in each country
dividually. As individuals, disabled
It is certainly appropriate to look at
and in each culture to specify what is
people are involved in establishing
the future of Independent Living pro-
needed for them to be independent.
goals for themselves in vocational,
This may or may not require the devel-
Fall/Winter 1981
13
opment of Independent Living pro-
grams as we know them in the United
News Briefs
States. On the other hand, it will no
doubt require changes in policies and
practices in every country.
Independent Living holds great
promise for disabled people. But more
than that, it holds great promise for all
people in society. In order to solve the
problems of disabled people, society
must assimilate them, meet their needs
in an ordinary manner, and stop re-
garding them as a problem. When
disabled people have achieved inde-
pendence, their individual problems
will be treated in the context of the
whole society. There will be no need for
special programs nor references to spe-
cial groups. Disabled people will be
just as independent and just as de-
pendent as everyone else.
DISABLED PEOPLES INTERNATIONAL MEETS IN SINGAPORE
D
Footnotes
'For example, persons who use wheelchairs
The founding meeting of Disabled
The Steering Committee drafted a Con-
are, for the most part, unable to use public-
Peoples' International (DPI) was held
stitution based on that employed by the
N
ly-funded mass transportation systems.
from November 30-December 4 in Singa-
International Labor Organization (ILO).
fo
Blind people have difficulty accessing
pore. Four hundred delegates from 45
Some general guidelines: 1. Membership
Si
public documents in a usable medium. Deaf
countries attended the first World Con-
is open to all organizations of disabled
people are unable to find interpreters or
gress to elect the first World Council,
people-that is, organizations in which
D
telecommunications devices in public of-
refine the standing Constitution, eval-
the majority of both the governing board
fices.
uate the impact of the International Year
and the membership is disabled. The ex-
Title V of the Rehabilitation Act of 1973
of Disabled Persons, and set policies and
ception is organizations concerned with
(P.L. 93-112), particularly Sections 503 and
priorities for future activities.
the developmentally disabled, in which
504, is often referred to as the Civil Rights
case parents or other advocates would
ot
Act for handicapped individuals.
count. 2. DPI points out that not only
DPI has established itself as a World
does one-tenth of the world population
³Perhaps the strongest of these organiza-
Organization of Persons with Disabil-
have a disability of some sort, but when
tions is the American Coalition of Citizens
ities. It was founded by over 300 disabled
one considers relatives directly affected
with Disabilities. Established in 1974,
delegates and a few non-disabled col-
by this disability one is talking about
ACCD represents nearly one hundred smaller
organizations of disabled people.
leagues at the XIV World Congress of
25% of the world population, or people.
Rehabilitation International held in
When one talks about integration and ac-
"The method used for developing this
Winnipeg in June of 1980. Meetings there
cessibility, one is not talking about chari-
definition was basically a Delphi procedure.
were orchestrated by the Coalition of Pro-
ty, but rather a question of justice, basic
vincial Organizations of the Handi-
rights. In the securing of these rights, the
⁵Definitions from Lex Frieden, Laurel
capped (COPOH), an alliance of Canadian
disabled are better equipped than any-
Richards, Jean Cole, and David Bailey. "A
organizations of the disabled. Resulting
body to be their own advocates. 3. In pur-
Glossary For Independent Living." IRLU
from these meetings were general guide-
suit of justice, DPI will establish mech-
Source Book: A Technical Assistance Man-
lines for the organization and the election
anisms, for the exchange of information
ual on Independent Living. Houston: TIRR
(The Institute for Rehabilitation and
of a 14-member Steering Committee with
and disabled personnel with professional
Research), C. 1979.
two representatives each from Asia,
expertise. It will attempt to stimulate the
Europe, Africa, North America, Latin
creation of organizations of disabled peo-
6These dimensions are defined and discussed
America, Oceania, and the Middle East.
ple around the world, and to knit them in-
in an article by Frieden entitled "Inde-
This Steering Committee met in Dublin
to a unified world body. It will provide to
pendent Living Programs," which appears
in October 1980 to draft a Constitution,
member organizations a wide array of
in the July-August, 1980 issue of Re-
plan and begin to organize the World
services to help them help themselves.
habilitation Literature magazine.
Conference which eventually took place
in Singapore, contact other organizations
Because of the importance of DPI, Re-
"The most obvious example of this type
of disabled people, line up funding, and
habilitation/WORLD intends to examine
program is the Vocational Rehabilitation
Program where eligibility for services is
open up avenues to other international or-
the organization and the First World
contingent upon the adoption of an approved
ganizations, including Rehabilitation In-
Congress in Singapore in greater depth in
vocational objective.
ternational and the United Nations.
upcoming issues of the magazine.
Rehabilitation/WORLD
we
MEMORANDUM
DATE:
October 21, 1992
TO:
Martin Grabois
FROM:
Lex Frieden H
Regarding the matter of my promotion, attached are copies of
journal articles which I understand must be forwarded along with
other material to the Promotions Committee. I believe these are
representative of the work which I have done in this area over the
years. If you feel that we should include additional articles,
please let me know and we will copy some more.
From the materials which you have given me, I understand that you
must send a cover letter regarding my application and that this
letter should include information about my research and educational
interests. I have attached a page which may assist you in this
matter.
LF:rf
Attachments
THE ISSUE Is
The Americans With Disabilities Act of 1990-
Will It Work? (Pro)
more than 15 years, tens of thousands
L
ouis Harris, the pollster, found in
a 1986 study that not working is
Lex Frieden
of public agencies, colleges and univer-
possibly the truest definition of
sities, and businesses éngaged in gov-
what it means to be disabled in America
ernment work have successfully com-
Lex Frieden is Senior Vice-President,
today. Currently, two thirds of working
plied with these provisions.
age persons with disabilities-more
The Institute for Rebabilitation and
Additionally, many local jurisdictions
than 8 million people-want to work
Research, 1333 Moursund, Houston,
and states already have provisions in
Texas 77030-3405. He is also former
but cannot find a job. Eighty-two per-
codes and statutes that are at least as
Executive Director, National Council
cent of them say they would give up
strong as those of the ADA.
federal support payments if they could
on Disability, which conceived of and
For organizations striving to meet
get a full-time job, but, when they try,
developed the Americans With Disabil-
the law's requirements, the ADA in-
74% of them report discrimination.
ities Act of 1990. He has used a wheel-
cludes unique provisions for technical
Such statistics are likely to improve
chair since bis spinal cord was injured
assistance and a generous amount of
in 1967.
with the enactment of the Americans
time before the law becomes effective.
With Disabilities Act of 1990 (ADA)
This article was accepted for publication
In fact, entities with fewer than 15 em-
(Public Law 101-336). Now, more than
December 6, 1991.
ployees are not covered at any time by
25 years after the 1964 Civil Rights Act
the employment requirements of the
(Public Law 88-352) guaranteed minor-
legislation. Organizations of 25 or more
ities protection against discrimination,
ities and disability rights advocates. The
employees must meet these require-
the ADA is extending federal civil rights
law represents a consensus of the
ments by July 26, 1992, and those or-
protection to 43 million Americans with
House and Senate, the White House,
ganizations with 15 to 24 employees
disabilities in the areas of employment
leaders of the business community, and
have until July 26, 1994 to meet the re-
in the private sector, services provided
disability rights advocates.
quirements. Businesses that are public
by state and local governments, trans-
The ADA provides the proper bal-
accommodations must be in compliance
portation, public accommodations, and
ance between the rights of persons with
with the public accommodations provi-
telecommunications.
disabilities and the legitimate concerns
sions of the law by January 26, 1992,
Just as it is no longer legal to dis-
of business. For persons with disabil-
and private intercity bus companies
criminate against people because of the
ities, the ADA mandates that they be
have 6 to 7 years to comply with the
color of their skin, their sex, their relig-
treated equally and judged as individ-
transportation provisions in the law.
ion, or their national origin, it is now il-
uals on the basis of their abilities. The
It has been said that compliance
legal to discriminate against people with
ADA ensures Americans with disabilities
costs associated with this legislation will
disabilities strictly on the basis of-their
the opportunity to become independent
be exorbitant and unduly burdensome
disability. Private businesses and public
and productive members of society. It
for many small businesses and certain
sector employers in America may no
guarantees them the right to be a part
public agencies. Experience shows,
longer refuse to hire or serve a person
of the social and economic fabric of life
however, that the actual cost for most
with a disability simply because he or
in their communities.
accommodations made under this new
she is disabled; they must consider the
For businesses and other organiza-
mandate will be negligible. Further-
person's work skills or abilities.
tions that are required to implement
more, most expenses incurred will be
Originally introduced in 1988, the
the law, the ADA addresses legitimate
deductible under present tax regula-
ADA was refined through extended ne-
concerns about definition, regulation,
tions. Nevertheless, even a small per-
gotiations and numerous changes. It
and cost. Almost all of the ADA's re-
centage increase in expenses may be a
was finally approved with overwhelming
quirements and standards are identical
strain for certain small businesses and
support by the House and Senate in
to those in Sections 503 and 504 of the
some nonprofit organizations. Thus,
July 1990. President Bush signed the
Rehabilitation Act of 1973 (Public Law
only new facilities must absolutely be
historic bill into law at the White House
93-112); these sections prohibit dis-
made accessible, and only modest
on July 26, 1990, before a record crowd
crimination by recipients of federal
changes to existing facilities that can be
of more than 3,000 people with disabil-
funds and by federal contractors. For
accomplished without much difficulty or
468
May 1992, Volume 46, Number 5
Independence: The Ultimate Goal
of Rehabilitation for
Spinal Cord-Injured Persons
(consumer participation; independent living; rehabilitation; role,
occupational; spinal cord injuries)
Lex Frieden, Jean A. Cole
During the late 1960s and early
services necessary to expand the
T
he question is often asked,
1970s, a new concept related to re-
range of living options for disabled
"What are the long-term
habilitation and improvements in
people beyond those traditionally
goals of spinal cord-injured indi-
quality of life began to emerge and be
available in most communities.
viduals after rehabilitation?" The
expressed by people with spinal cord
The role of occupational therapists
answer is, more likely than not,
injuries and other disabilities. This
in the independent living stage of the
that the goals of spinal cord-in-
concept, independent living, is the
rehabilitation process can be similar
jured individuals are generally the
foundation of the independent living
in some respects to their role during
same as those for anyone else. Most
movement, which has helped to over-
earlier phases of medical rehabilita-
people want to have a family, a
come the barriers to a higher quality
tion. However, the definition of inde-
home, a car, a job, and recreational
of life for disabled people. Of the
pendence as a "mind process" leads
opportunities.
many organizations and programs
to considerable expansion of the ther-
In the past, some rehabilitation
set up to provide support for dis-
apist's role beyond the focus on phys-
professionals, friends, and family
abled people living in the community,
ical skills, which are usually key
members have discouraged people
the independent living program
priorities during medical rehabilita-
with spinal cord injuries from
seems to be comparatively successful
tion. Occupational therapists typi-
adopting or seeking these goals.
at facilitating independence by peo-
cally possess knowledge and skills
ple with spinal cord injuries. Inde-
that equip them well for assisting
pendent living programs provide the
clients in the independent living
Lex Frieden, MA, is Executive Direc-
kind of community-based support
stage of the rehabilitation process.
tor, National Council on the Handi-
capped, Washington, DC 20591. At
the time of this study he was Director,
Independent Living Research Utili-
zation Project, The Institute for Re-
habilitation and Research, Houston,
TX, and Assistant Professor of Reha-
bilitation at Baylor College of Medi-
cine, Houston, TX.
Jean A. Cole, PhD, is a master's
candidate, School of Occupational
Therapy, Texas Woman's University;
she also is Assistant Professor of Re-
habilitation at Baylor College of
Medicine, Houston, TX, 77030.
734 November 1985, Volume 39, Number 11
Independent Living:
HOUSTON
EXPERIENCE
Lex Frieden
Independent living means par-
skills required in order to live inde-
coordinated through the use of an ac-
ticipating in day-to-day life and
pendently. Most of the 40 people who
tivity board. The activity board has
making decisions that lead to self de-
lived in the project in its 3 years of
the residents listed with their apart-
termination. For disabled people, this
operation as an RSA-funded research
ment number and a code by which the
implies living in the community,
and demonstration project began
attendants know what is needed each
away from custodial institutions, and
working or going to school while they
day for each resident, such as dress-
being responsible for one's own af-
lived there. The average number of
ing, preparing a meal, turning and
fairs.
residents at any time was 12.
transferring, personal hygiene, and so
This style of independent living
Most people graduated from the
on. Each resident is responsible for
may be facilitated by community
Cooperative Living program in about
making sure that each service he or
based programs which provide serv-
15 months and moved to more inde-
she requires is recorded on the activ-
ices like attendant care, transporta-
pendent living arrangements in the
ity board.
tion, peer counseling, equipment
community. Many of them chose to
Transportation to and. from neces-
maintenance, and information about
continue sharing support services and
sary activities is provided by the proj-
other services.
formed their own corporations to pro-
ect from 7 a.m. to 6 p.m., Monday
In Houston, a variety of independ-
vide independent living services.
through Friday, in a specially
ent living programs have evolved to
These organizations, like Independent
equipped van. Transportation charges
assist severely physically disabled
Lifestyles, Free Lives, and CLASP
average $85 per month.
people. The first of these was the Co-
(Cluster Living and Shared Provid-
Independent Lifestyles is recog-
operative Living Residential Project,
ers), exist in Houston today as inde-
nized by the Texas Rehabilitation
which operated from 1972 through
pendent entities.
Commission as an approved vendor of
1975.
services. The project is directed by a
Independent Lifestyles
board elected from the residents
Cooperative Living
Independent Lifestyles, Inc. pro-
themselves. Financial support for the
Organized by a group of severely
vides supportive services for 23 se-
program comes from charges to resi-
physically disabled people who were
verely physically disabled persons
dents, which are below the actual cost
former patients of the Texas Institute
who live at Banyan Townhomes, a
of providing the service, and from
for Rehabilitation and Research,
group of condominiums developed
contributions.
(TIRR), Cooperative Living demon-
and financed by the residents them-
strated the benefits of sharing services
selves. Attendant care is available on
Free Lives
required to support independent liv-
a 24-hour basis. Each resident pays
Free Lives is a cluster of 11 se-
ing. Housed in a barrier-free
for his or her own attendant care ac-
verely disabled persons who live in
dormitory-style building near
cording to the number of hours of
the same wing of the 292-unit Inde-
downtown Houston, the Cooperative
service subscribed to each month. The
pendence Hall, an FHA 236 project
Living residents hired and managed
average monthly charge for attendant
for handicapped and elderly people.
their own attendants, arranged for
care ranges from $175 to $230.
Each resident has his or her own bar-
their own transportation on a shared
Independent Lifestyles has an of-
rier free apartment and subscribes to a
basis, and generally practiced the
fice where attendants activities are
cooperative attendant service. Routine
23
AMERICAN REHABILITATION
Special Article
Independent Living Models
LEX FRIEDEN
Introduction
for this to happen. In many instances these services
relate to basic needs like housing, transportation, and
A
N INDEPENDENT LIVING PROGRAM has
attendant care. However, in some cases these services
been defined as a community based program
relate to more career oriented goals like education
having substantial consumer involvement that pro-
and work.
vides directly or coordinates indirectly through refer-
ral those services necessary to assist severely disabled
Mr. Frieden is director of research for the New Options
individuals to increase self-determination and to
Transitional Living Project at the Texas Institute for
minimize unnecessary dependence on others. Serv-
Rehabilitation and Research in Houston, Tex. He is also
ices provided or coordinated include housing, attend-
director of a federally funded independent living research
ant care, readers and/or interpreters, and information
utilization project, and a member of the faculty of the
about goods and services relevant to independent liv-
Baylor College of Medicine. Mr. Frieden, a quadriplegic,
ing. Other services that may either be provided or
has been involved in the organization of several groups of
coordinated by an independent living program in-
disabled individuals, including the American Coalition of
clude transportation, peer counseling, advocacy or
Citizens with Disabilities and the Houston Coalition for
political. action, independent living skills training,
Barrier-Free Living. Working in the independent living
equipment maintenance and repair, and social or rec-
movement by severely disabled persons since the early
reational services.¹
1970's, be is a frequent contributor to the literature in
Let us examine this definition more closely. There
this area and has published several papers on independent
seem to be three major elements which constitute the
living, including the background paper on Community
substance of this definition. They are: community
and Residential Based Housing for the White House Con-
based, consumer involvement, and service provision.
ference on Handicapped Individuals.
Community based implies that the programs are de-
An expanded version of this article will be included as
signed to serve the needs of a population in one par-
part of a forthcoming publication entitled Independent
ticular community as opposed to a region, state, or
Living Service Centers, to be published as an Institute
nation. Community based as it applies to this defini-
on Rehabilitation Issues document by the Arkansas Re-
tion also means that programs are rooted in the com-
habilitation Research and Training Center, Hot Springs,
munity which they serve to the extent that they are
Ark., in December of this year.
dependent upon the people and resources in that
Research for this article was supported in part by the Na-
community for direction and subsistence. Consumer
tional Institute of Handicapped Research, U.S. Dept. of
involvement implies that these programs depend
Health, Education, and Welfare, under grant #22P-
upon people who receive their services, people who
59106/6-01. For further information or technical assist-
have in the past received services, or people who may
ance related to independent living, contact the author at:
at some time in the future receive services to provide
Independent Living Research Utilization Project, Texas
leadership and assistance by serving on boards of di-
Institute for Rehabilitation and Research, 1333 Mour-
rectors, advisory committees, and by working as paid
sund, Houston, Tex. 77030.
or volunteer staff persons in the program. Consumer
involvement in this case insures that programs do not
In order to gain a better understanding of the pos-
lose touch with the needs of their clients, and it
sible structures and functions of independent living
means that they will maintain a sort of grass roots,
down-to-earth character and richness. Service provi-
programs, let us look at three types of programs iden-
sion indicates that these programs are not simply so-
tified by the Independent Living Research Utilization
(ILRU)* project in an extensive 1978 survey. After
cial clubs or political action groups. They are in the
business of enabling severely disabled people to live
polling more than 450 programs that claimed to be
providing services for independent living, ILRU iden-
comparatively independent lives in their own com-
munities by providing whatever services are necessary
*ILRU is a federally funded independent living program techni-
cal assistance project. Located at the Texas Institute for Rehabilita-
¹Frieden, Lex; Richards, Laurel; Cole, Jean; and Bailey, David.
tion and Research (TIRR) in Houston, Texas, ILRU conducts re-
"A Glossary for Independent Living." ILRU Sourcebook: A Tech-
search, training, and consultation, and produces written and
nical Assistance Manual on Independent Living. Houston, Tex.:
audiovisual materials related to independent living of severely dis--
TIRR (Institute for Rehabilitation and Research), 1979.
abled people.
JULY-AUGUST, 1980, Vol. 41, No. 7-8
169
Special Article
A Tale of Two Lives
Lex Frieden
Preface
in an electronics engineering program offered there.
I
HAVE LOOKED at life from two sides of a many-sided
fence. I do not pretend to know everything about either,
N
ovember 20, 1967, was the last day of school before
side, but I have experienced a rather unique situation, and
Thanksgiving break at O.S.U. That day I had classes
I believe I can, by sharing my experience, contribute a
from 7:30 in the morning to 5:30 in the evening. After
valuable perspective to the viewpoint of others.
classes, I went with a friend to a fraternity rush party and
then returned to the dormitory. There, I encountered four
other fellows with whom I went for a car ride at about
Mr. Freiden, after graduating from the University of Tulsa
11:30. That night, as we were returning to the dorm, we.
in December, 1971, continued with graduate studies. He
had a head-on collision with another car.
received an assistantship to continue bis studies in psy-
I was stunned momentarily but immediately regained
chology at the University of Houston in the fall of 1972.
consciousness and, as everyone scattered from the car, I
discovered that I could not move!
an has often contemplated the possibilities of living
Since we were all conscious, the ambulance company
M
twice, but few men have ever realized the opportuni-
took us to the university infirmary where a single doctor
ties of their dreams. Although it seems like a nightmare at
and an incompetent nurse tried to patch up everyone.
times, I have realized an opportunity few men dare to
The driver of our car had several broken ribs, another
imagine.
boy had a broken leg, and two others had severe lacera-
In the spring of 1967, I graduated from Alva High
tions. Since I was the only one there who was not bleeding,
School, Alva, Okla, after a fairly successful childhood
I was the last to be examined.
filled with a variety of enlightening experiences. I was a
When the doctor discovered I was paralyzed, he imme-,
good student and consequently had the privilege of leading
diately diagnosed my injury as spinal shock At this,
my class as valedictorian. I was also fortunate to have the
point, he began taking x-rays in an effort to determine the
confidence of my peers who selected me as Most Likely to
extent and location of the injury. The startled expression
Succeed.
on Dr. Jenkin's face as he looked at the x-rays somehow
I was able to participate in a wide variety of school
signaled the severity of my injury.
activities, including music, drama, athletics, and student
He immediately telephoned Don Rhinehart, M.D., a
government. I played first chair trumpet in the band, had
neurologist at the Oklahoma University School of Medi-
the lead in the junior and senior class plays, and was cap-
cine. Dr. Rhinehart agreed to meet me at St. Anthony's
tain of the golf team. Probably my most exciting experi-
Hospital in Oklahoma City. I was still conscious at the
ence during this time was my selection as the Oklahoma
emergency room, so Dr. Rhinehart took some more x-rays
representative to the Student Burgesses in Williamsburg,
before moving me to the intensive care unit, where I was'
Virginia.
to be in critical condition for the next 10 days.
As a youngster, I was very active in the Boy Scouts,
My recollections from that period are clouded by much
earning Eagle and attending two National Jamborees in
pain and the heavy drugs used to subdue it.
Colorado Springs and Valley Forge, Pa. Later, I became
When I awakened, the day after the accident, my mother
a camp counselor and spent three summers teaching boys
and father were there with Dr. Rhinehart and an ortho-
how to row boats, paddle canoes, and swim.
pedic surgeon, Dr. Spencer. My head was strung in a
I always managed to keep busy, and the summer of my
clumsy harness and tied to sixty pounds of weights. This
senior year is a good example. Besides lifeguarding at a
traction or constant pressure was to remain on my spine
municipal swimming pool, I worked part time at a com-
for the next six weeks.
mercial radio station, coached a Little League baseball
Dr. Rhinehart said my neck had been broken by a
team, played in a rock band, and earned six hours of
whiplash at the fifth vertebra; but he could make no prog-
credit at Northwestern State College.
nosis until he did a laminectomy or exploratory surgery.
After all that, I was ready to make my way off and
Dr. Spencer was to do a bone transplant from my hip to
conquer the great university. I accepted a President's
my neck and fuse a new vertebra in place of the one that
Scholarship from Oklahoma State University and enrolled
had been shattered. They needed to operate as soon as
JANUARY, 1973, Vol. 34, No. 1
7
MAJOR RESEARCH INTERESTS
Rehabilitation policy development
Development of independent living programs
Evaluation of independent living programs
Personal dynamics of independence among disabled people
International rehabilitation information networking
MAJOR EDUCATIONAL INTERESTS
Rehabilitation psychology
Rehabilitation and independent living program administration
Development of independent living programs as alternative service
delivery mechanisms.
MEMORANDUM
DATE:
November 13, 1992
TO:
Martin Grabois, M.D.
FROM:
Lex Frieden JA
Please find attached a list of eight colleagues whom you may
solicit for recommendations on my behalf as part of the promotion
review process. I understand that only three such recommendations
are required. However, I am sure that all of these individuals
would be pleased to contribute to this process. If you feel that
additional recommendations would be of benefit to the review
committee, I would be happy to provide you with an expanded list.
I believe that this list of recommendations completes the material
which I am required to submit to you in this process. Please
inform me if there is anything else I need to do to move forward.
Again, thank you for your support and assistance with this matter.
Henry B. Betts, M.D.
(312) 908-6017
Professor & Chairman
Department of Physical Medicine & Rehabilitation
Northwestern University
Medical Director and Chief Executive Officer
Rehabilitation Institute of Chicago
345 East Superior Street, Room 1573
Chicago, Illinois 60611
Theodore Cole, M.D.
(313) 936-7190
Professor & Chairman
Department of Physical Medicine & Rehabilitation
University of Michigan
1500 E. Medicine Center Drive
Ann Arbor, Michigan 48109-0042
Dorothy L. Gordon, R.N., D.N.Sc.
(410) 955-7758
Associate Dean of Graduate Affairs
The Johns Hopkins University
School of Nursing
600 North Wolfe Street
Baltimore, Maryland 21205
William H. Graves, III, Ed.D.
(601) 325-3426
Professor
Counselor Education and Educational
Psychology
Mississippi State University
P.O. Drawer GE
Mississippi State, Mississippi 39762
Duane Alexander, M.D.
(301) 496-3454
Director
National Institute of Child Health
and Human Development
Acting Director, National Center for
Medical Rehabilitation Research
National Institutes of Health
Room 2A04, Building 31
9000 Rockville Pike
Bethesda, Maryland 20892
David B. Gray, Ph.D.
(301) 402-2242
Acting Deputy Director
National Center for Medical
Rehabilitation Research
6120 Executive Boulevard
Executive Plaza South, Room 450 West
Bethesda, Maryland 20852
Justin W. Dart, Jr.
(202) 376-6200
Chairman
President's Committee on Employment of People with Disabilities
1331 F Street, NW
Washington, DC 20004-1107
Donald E. Galvin, Ph.D.
(202) 408-9320
Vice President
Director of Rehabilitation and
Disability Management
Washington Business Group on Health
777 North Capitol Street, NE, Suite 800
Washington, DC 20002
Dell - Thanks
Roy X5284
LEX FRIEDEN
CURRICULUM VITAE
6
Chairman, Long Range Planning Committee on Knowledge Utilization,
National Institute for Rehabilitation Research, 1983
U.S. Representative, International Panel on Rehabilitation,
Employment, and Economics, Organization for Economic Cooperation
and Development, Paris, France, 1989-1990
Member, Advisory Committee on Prevention of Secondary Disabilities,
U.S. Centers for Disease Control, 1989-1990
Member, Knowledge Utilization Policy Committee, National Institute
on Disability and Rehabilitation Research, 1989
Executive Committee Member, Long Range Planning Committee, National
Institute on Disability and Rehabilitation Research, 1990-1992
Member, Medical Rehabilitation Research Study Group, National
Institutes of Health, 1990
Member, Railroad Access Advisory Board, National Railroad Passenger
Corporation (Amtrak), 1990-present
Member, Review Panel on Long Term Care, Institute of Medicine,
National Academy of Sciences, 1991
Member, Task Force on Rehabilitation Research Training, National
Institutes of Health, 1991
Member, Transportation Access Research Panel, U.S. Office of
Technology Assessment, 1991-present
Chairman, National Advisory Board, National Center on Medical
Rehabilitation Research, National Institute on Child Health &
Human Development, National Institutes of Health, 1991-present
PUBLICATIONS:
Papers Published
*
Frieden, L: A Tale of Two Lives. Rehabilitation Literature,
January, 1973.
Rot,
Frieden, L: Organizing the Disabled in the Southwest.
Achievement, June, 1975.
article two *
Frieden, L: Independent Living: The Movement and Its Programs.
American Rehabilitation, July-August, 1978.
Frieden, L: Independent Living Programs in Houston. Paraplegia
forword the aretill not beingle them with to *
Life, January-February, 1979.
Frieden, L: Independent Living: Consumers and Government Join
Hands. Informer, May, 1979.
Frieden, L: Independent Living: The Houston Experience.
American Rehabilitation, July-August, 1979.
Frieden, L, and Richards, L: Independent Living: Choosing From
a Variety of Programs. Disabled USA, Vol. 2, No 9, 1979.
you they
Dellay
LEX FRIEDEN
CURRICULUM VITAE
7
Frieden, L: How to Live by Yourself. Accent on Living, Fall,
1979.
*
Frieden, L and Frieden, J: Organized Consumerism at the Local
Level. American Rehabilitation, September-October 1979.
Frieden, L and Richards, L: Program Models and Client Needs:
Three Practical Applications. Catalyst, March, 1980.
Frieden, L: Independent Living Program Models. Rehabilitation
Literature, July-August, 1980.
Frieden, L: Editorial comment. Independent Times, Spring, 1981.
Frieden, L: Commentary on Independent Living. Rehabilitation
Literature, September-October, 1981.
Frieden, L and Frieden, J: Independent Living in Sweden and the
Netherlands. Mainstream, November, 1981.
Widmer, M, Frieden, L, and Richards, L: Characteristics of
Independent Living Programs in the United States. National
Spinal Cord Injury Foundation Convention Journal, Fall, 1981.
Frieden, L: Independent Living in the U.S. and Implications for
Other Countries. Rehabilitation World, Fall/Winter, 1981.
Frieden, L and Cole, J: Independence: The Ultimate Goal of
Rehabilitation. American Journal of Occupational Therapy,
November, 1985, Vol. 39, No. 11, pp 734-739.
Frieden, L: Policies for the Disabled Must Encourage Individual
Productivity and Independence. Business and Health, April,
1986, p 60.
Frieden, L and Francis, F: Trends in Research as We Approach
the 21st Century. Momentum published by the New York
Office of Vocational and Educational Services for Individuals
with Disabilities, Winter, 1989, pp 9-14.
Richards, L and Frieden, L: Introduction to Rural Independent
Living. Rural Special Education Quarterly, Spring, 1992, Vol.
11, No. 1, pp 3-5.
*
Frieden, L and Nosek, M: The Issue is--The Americans with
Disabilities Act--Will It Work? American Journal of
Occupational Therapy, May, 1992, Vol. 46, No. 5, pp 466-469.
MEMORANDUM
DATE:
September 24, 1992
TO:
Martin Grabois, M.D.
FROM:
Lex Frieden
As you requested some time ago, I have brought my curriculum vitae
up to date and into conformance with the current Baylor style as
much as possible. This was not an easy task since the CV was not
routinely kept up to date during the four-year period from 1984 to
1988 when I was Executive Director of the National Council on the
Handicapped. Nevertheless, Roxy and I have completely researched
my calendars and records from the period of my government service,
and we have now finished the necessary reconstruction and
formatting.
I understand that copies of three journal articles and
recommendations from three external peers must be submitted along
with the CV in proper form for consideration by the promotion
committee. I am in the process of locating clean copies of
articles for you, and I have attached a list of colleagues whom we
may contact for recommendations. Please advise me of additional
information or material which you may need in order to support my
promotion review.
Thank you for your great support and assistance with this
undertaking. I trust the committee will have a positive view of my
commitment and contributions to the field of rehabilitation and to
Baylor College of Medicine.
William A. Spencer, M.D.
Theodore Cole, M.D.
David Gray, Ph.D.
Justin W. Dart, Jr.
William Graves, Ph.D.
Duane Alexander, M.D.
Donald Galvin, Ph.D.
Thomas Backer, Ph. D.
Leon Thornton
APH Guy Leung
Ron House
Henry Betts, M.D.
Dorothy Gordon
Roberta Treischmann
Carl Granger
Susan Parker
Tochuh
Malcolm Morrison, Ph.D.
Frank Bowe
titles.
I. King Jordan
RWJ Steven A. Schroeder, MD.
Maryland - Phil and Maggie
Rick Ressler
Reed Greenwood
Dicker Matterson
Memo to Dr. Israbois
as you requested some time ago, t
have brought my CV up to date and
into conformance with the current Baylor
os michas possible.
style. This was not an easy task since
the CV was not routinely kept up to date
during the (4) four year period from 1984 to
1988 when t was Executive Director of the national
Council on the Handicapped. nevertheless, with
Rongs great help, Roxy and f have completedy
researched my calendares and records from
the period of my government service, and
we have now finished the necessary
reconstruction and formation
assuming the attached C.U. meets
departmental standarde for format and content
I understand that copies of three journed
articles and recommendations from 3 erternal
peers must be submitted along with The CU
in proper from for couse consideration by
the promotion commitee. A Oopa presently
in the sprocess of locating clean copies
of articles for you, and t have attached at
a list of colleques whom we may contact
for ecommentations. Please advise me of additional
information or material which you may
meed in order to support my promotion review.
Thank you for your great support and
assistance will with have this undertakeing d hope trust the
commitee has a positive view of my commitment
and contributions to the field of rehablitation
and to Bayler College of Medicine.
William Spencer
RWJ. Steve
Ted Cale
amaryhand - Phil + Maggie
Pavid Gray
Rick Ressler
Justin Part
Reed Greenwood
Bill Graves
Dick matterson
Dwane alaxander
Den Galvin
Jom Badker
Jeon Thorton
APA Guy Leung
Ron House
Henry Betta
Peroithy Gorden
Roberta Freschman
Carl Granger
Susan Parber
Malcolm minisson
Frank Bowe
t. King fordon
we
inkie Fill
MEMORANDUM
DATE:
October 5, 1992
TO:
Martin Grabois
FROM:
Lex Frieden If
Please find attached a letter which you may wish to attach to the
package of materials which you submit to the Baylor Faculty
Promotions Committee. Please use your judgement in this matter.
I am not certain of the protocol to be used in securing
recommendations from external peers. Do you send a letter
requesting recommendations or do I? In any case, I have a long
list of people whom we might solicit. At your convenience, I would
like to review this list with you and select those whom you believe
would be most important for this process.
Roxy is in the process of obtaining clean copies of published
articles on which I am single or first author. We will forward
those to you as soon as we have a complete set.
Thank you for your continuing interest in this matter.
LF:rf
Attachment
THE WHITE HOUSE
WASHINGTON
April 29, 1988
Dear Mr. Frieden:
I want to add my congratulations to those of your
friends and colleagues as you leave your post as
Executive Director of the National Council on the
Handicapped.
Serving under the able leadership of Chairwoman
Sandra Parrino, you presided over the Council's
operations during its first, difficult years as an
independent Federal agency. You can be proud of
your contributions to the Council's effectiveness.
As chief editor and coordinator of the Council's
historic report recommending revisions in Federal
disability policy, you have had a lasting impact in
helping us reach our national goals of freeing dis-
abled Americans from unnecessary dependency and
removing obstacles to the development of their full
potential. I particularly commend you for the ways
you've opened the Council's work to the ideas of those
its decisions affect, thereby improving the quality of
our policies and helping us achieve broad, bipartisan
support for them.
You have my special congratulations on being named
recipient of the 1988 Distinguished Service Award of
the President's Committee on the Handicapped.
Nancy joins me in offering you and your family best
wishes for every future happiness and success. May
God bless you and keep you.
Sincerely,
Ronald Reagon
Mr. Lex Frieden
Executive Director
National Council on
the Handicapped
Washington, D.C. 20591
Journal of
Journal of ALLIED HEALTH
ALLIED HEALTH
RICHARD BAMBERG, PhD,
Volume 21, Number 3
Summer 1992
EDITOR
ALAN M. LEIKEN, PhD
DAVID C. BROSKI, PhD
MT(ASCP)SH, CLDir(NCA)
Associate Professor
Vice Chancellor
Director, MAEd/Allied Health Sciences
School of Allied Health Professions
for Academic Affairs
Program
Health Sciences Center
The University of Illinois at Chicago
Coordinator, National Multiskilled Health
State University of New York at Stony
169 CME (M/C 518)
Practitioner Clearinghouse
Brook
Box 6998
Department of Special Programs
Stony Brook, New York 11794
Articles
Chicago, Illinois 60680
School of Health Related Professions
University of Alabama at Birmingham
H. LAWRENCE MCCROREY, PhD
149 Commentary: The Americans With Disabilites Act: New Challenges
Birmingham, Alabama 35294
Dean
ASSOCIATE EDITOR
School of Allied Health Sciences
for the Health Professions. Quentin W. Smith, Wendy Wilkinson,
SUSAN E. SISKA, MBA
JOHN BRUHN, PhD
University of Vermont
Director of Advancement
Vice President for Academic Affairs
Burlington, Vermont 05405
Lex Frieden, J. David Holcomb
College of Associated Health Professions
Professor of Nursing and Allied Health
The University of Illinois at Chicago
The University of Texas at El Paso
THOMAS C. ROBINSON
161 Problem-Based Learning: An Approach Toward Reforming Allied
169 CME (M/C 518)
El
Paso, Texas 79968-0501
Dean
Box 6998
College of Allied Health Professions
Health Education. John G. Bruhn
Chicago, Illinois 60680
DAVID A. CHIRIBOGA, PhD
University of Kentucky
Chair and Professor
Lexington, Kentucky 40536
Department of Graduate Studies J-28
(Ex Officio)
175 Perceived Differences in the Importance and Frequency of Practice
CONTRIBUTING EDITORS
School of Allied Health Sciences
of Clinical Teaching Behaviors. Crystal L. Dunlevy, Kay N. Wolf
THOMAS W. ELWOOD, DrPH
University of Texas Medical Branch
GORDON H. SCHUCKERS, PhD
Director. Government Relations and
Galveston, Texas 77555-1028
Associate Dean and Professor
Policy Research
School of Allied Health Professions
185 Job Orientation and Motivation of Cytotechnologists.
Association of Schools of Allied Health
JOHN DOLAN, RhD
Louisiana State University Medical Center
Professions
Ursula K. Bedrossian
Assistant Dean for Academic Affairs
Shreveport, Louisiana 71130-3932
1101 Connecticut Avenue, NW
School of Allied Health Professions
Suite 700
Louisiana State University Medical Center
LEOPOLD G. SELKER, PhD
197 Differences in Innovation-Related Characteristics Between Single-
Washington, DC 20036
New Orleans, Louisiana 70112
Interim Dean
College of Associated Health Professions
skilled and Multiskilled Health Practitioner Educational Programs.
JOHN J. HEDL, Jr, PhD
CAROLYN M. DEL POLITO
The University of Illinois at Chicago
Professor and Chairman
FREELAND, PhD
Chicago, Illinois 60680
Richard Bamberg, H. Duane Akroyd, Dennis T. Adams
Department of Allied Health Education
Executive Director
Southwestern Allied Health Sciences
Association of Schools of Allied Health
FERNANDO M. TREVINO, PhD, MPH
School
Professions
Dean
The University of Texas Southwestern
Washington, DC 20036
School of Health Professions
Medical Center at Dallas
(Ex Officio)
Southwest Texas State University
5323 Harry Hines Blvd.
San Marcos, Texas 78666
Departments
Dallas, Texas 75235-9089
VINCENT SALVATORE GALLICCHIO,
PhD
LILLESS MCPHERSON SHILLING, PhD
207 A View From Washington
Associate Dean for Research
EDITOR EMERITUS (1972-79)
Assistant Professor
Professor of Medicine and Clinical
J. WARREN PERRY, PhD
219 Potential Patterns
Professional Development Educational
Sciences
Department
Hematology/Onocology Division CC406
225
Reviews
College of Health Related Professions
Lucille P. Markey Cancer Center
EDITOR EMERITUS (1979-87)
Medical University of South Carolina
233
Allied Abstracts
University of Kentucky Medical Center
JOHN E. BURKE, PhD
171 Ashley Avenue
Lexington, Kentucky 40536-0084
243
Advertisements and Notices
Charleston, South Carolina 29425
DIANA GARZA, EdD, MT(ASCP)
EDITORIAL ASSOCIATE
C3
Guidelines for Authors
JOHN R. SNYDER, PhD, MT(ASCP)SH
Associate Professor
ANNE TYREE
Associate Dean
Department of Health Care
Director, Administrative Operations
Indiana University School of Medicine
Administration
College of Associated Health Professions
Professor and Dean, School of Allied
Texas Women's University-Houston
The University of Illinois at Chicago
Health Sciences
Center
169 CME (M/C 518)
Coleman Hall 120
Houston, Texas 77030
Box 6998
1140 W. Michigan Street
Chicago, Illinois 60680
Indianapolis, Indiana 46202-5119
J. DAVID HOLCOMB, EdD
Professor and Head
Division of Allied Health Sciences
EDITORIAL ASSISTANT
EDITORIAL BOARD
Department of Community Medicine
MARGRET PELLETIER
H. DUANE AKROYD, PhD, RT(R)
Baylor College of Medicine
Editorial Associate
Associate Professor
Houston, Texas 77030
College of Associated Health Professions
Director, Health Occupations Education
The University of Illinois at Chicago
College of Education and Psychology
LINDA G. KRAEMER, PhD
169 CME (M/C 518)
North Carolina State University
Associate Dean
Box 6998
Raleigh, North Carolina 27695-7801
College of Allied Health Sciences
Chicago, Illinois 60680
Thomas Jefferson University
Philadelphia, Pennsylvania 19107
Commentary
Quentin W. Smith
Wendy Wilkinson
Lex Frieden
J. David Holcomb
JOURNAL OF ALLIED HEALTH
(Publication No. ISSN 0090-7421)
Commentary features a sampling of opinion of special interest to the allied health
Volume 21 Number 3 Summer 1992
professions and readers of the Journal. The editors welcome your comments and
contributions.
Publisher: The Journal of Allied Health is published by the University of Illinois at
Chicago, College of Associated Health Professions (M/C 518), 808 S. Wood Street, Box
The following was written by Quentin W. Smith, MS, assistant professor, Department
6998, Chicago, Illinois 60680. Published quarterly: Winter, Spring, Summer, and Fall.
of Physical Medicine and Rehabilitation and Division of Allied Health Sciences,
Second-class postage paid at Chicago, Illinois and at additional mailing offices. POSTMAS-
TER: Send address changes to the Journal of Allied Health, Publications Coordinator at the
Department of Community Medicine, Baylor College of Medicine, One Baylor
Association of Schools of Allied Health Professions, 1101 Connecticut Avenue, N.W., Suite 700,
Plaza, Houston, Texas 77030; Wendy Wilkinson, JD, project coordinator,
Washington, DC 20036.
Southwest Disability and Business Technical Assistance Center, Independent Living
Research Utilization Program, The Institute for Rehabilitation and Research, 2323
Back Issues: Requests for back issues can be made directly to the Journal of Allied Health
South Shepherd, Suite 1000, Houston, Texas 77019; Lex Frieden, MA, assistant
(M/C 518), The University of Illinois at Chicago, 808 S. Wood Street, Box 6998, Chicago,
professor, Department of Physical Medicine and Rehabilitation, Baylor College of
Illinois 60680. Send check or money order payable to the Journal of Allied Health. The
Medicine, and director, Southwest Disability and Business Technical Assistance
cost is $20 per back issue. All prices include postage and handling. Microfilm reproductions
Center; and J. David Holcomb, EdD, professor and head, Division of Allied Health
48106. are available from Xerox University Microfilms, 300 North Zeeb Road, Ann Arbor, Michigan
Sciences, Department of Community Medicine, Baylor College of Medicine.
Subscriptions: The Journal of Allied Health is an official publication of the Association of
Schools of Allied Health Professions, 1101 Connecticut Ave., N.W., Suite 700, Washington,
DC 20036. Annual subscription is an integral part of the service for members of the associa-
THE AMERICANS WITH DISABILITIES ACT:
tion. Nonmembers of the association may subscribe to the Journal at a cost of $70 for one
year. $130 for two years. and $190 for three years, for those residing in the US and its pos-
NEW CHALLENGES FOR THE HEALTH PROFESSIONS
sessions. All other countries add $17 per year postage. Single copies and back issues, when
available. are $20 each (see above). Change of address notices should be sent to the associa-
On July 26, 1990, President George Bush signed Public Law 101-336, the
tion, allowing six weeks for it to be effective. Include old and new addresses with zip codes.
Americans with Disabilities Act (ADA). When signing, President Bush stated
The association cannot assume the responsibility of replacing undelivered issues due to
change of address. Subscribers may only claim issues undelivered for reasons other than
with regard to the opportunities that the ADA afforded to persons with severe
change of address from the association for a period of three months following publication of
disabilities, "Let the shameful wall of exclusion finally come tumbling down. "1(pl)
the undelivered issue. Thereafter, the association is not responsible for the replacement of
The ADA has been hailed by many as landmark legislation in opening oppor-
undelivered issues. Subscribers may claim issues from the publications coordinator at the
Association of Schools of Allied Health Professions (see above address).
tunities for persons with disabilities to become fully participating members of
their communities.
Advertisements: Advertisements may be sent directly to the Journal of Allied Health (M/C 518),
The ADA is the most comprehensive legislation regarding rights of persons
The University of Illinois at Chicago, 808 S. Wood Street, Box 6998, Chicago, Illinois
with disabilities that has ever been signed into law. It builds and expands upon
60680. Check the "Advertisements and Notices" section of this Journal for current rates.
numerous other pieces of legislation that have challenged persistent discrimina-
Copyright ©1992 by the Association of Schools of Allied Health Professions. Nonprofit
tory practices toward persons with disabilities. Previous legislation, targeted to
organizations or individuals may reproduce or quote from material copyrighted in the Journal
for noncommercial purposes on a one-time basis provided full credit is given.
eliminate disability-based discrimination, referenced remedies that were includ-
The Journal of Allied Health is indexed in Index Medicus and the Cumulative Index to
Nursing and Allied Health Literature.
Journal of Allied Health, Summer 1992
149
ed under Title VII of the Civil Rights Act of 1964.2 Such legislation included:
cles took effect August 30, 1990. Accessibility requirements for particular
The Architectural Barriers Act, requiring that federal and federally funded
types of vehicles are specified in regulations issued by the Department of
facilities (designed, constructed, leased, or altered) be accessible to and
Transportation on September 6, 1982.
usable by physically disabled persons;³
Title IV mandates that telecommunication systems be made accessible to
The Education for All Handicapped Children Act of 1975, commonly
persons with disabilities by January 26, 1993. This means that interstate and
referred to by school district personnel as Public Law 94-142, and requiring
intrastate telecommunication relay services must be available to persons with
access to educational opportunities by all children regardless of disability
communication impairments on a 24-hour-per-day basis.
(referred to since the late 1980s as the Individuals with Disabilities Education
Title V covers other issues implicated by this law. Insurance issues are
Act-IDEA);⁴
addressed, but are not remedied. This section of the Act explains that state
The 1973 Rehabilitation Act, which, through its sections, requires the fol-
governments have no immunity from provisions of the ADA, nor does the
lowing: 501-affirmative action in hiring, placing, and advancing federal
US Congress or other branches of government. Further explanation of the
employees with disabilities;5 502-issuance of Minimal Guidelines and
ADA implementation provisions and the relationship of the ADA to existing
Requirements for Accessible Design to be enforced by the legislatively creat-
federal, state, and local antidiscrimination laws is also included under Title V.
ed Architectural and Transportation Barriers Compliance Board;6 503-fed-
eral contractors receiving awards of more than $2,500 must implement
affirmative action plans for the hiring and advancement of workers with dis-
GENERAL IMPLICATIONS FOR THE HEALTH
abilities;⁷ and 504-federal grantees must make their programs and activi-
PROFESSIONS
ties accessible to persons with disabilities;8 and
The passage and effective implementation of the ADA hold enormous promise
The Fair Housing Amendments Act of 1988, which extends federal equal
for persons with all types of disabilities. In order to ensure that implementation
housing opportunity protections to persons with disabilities.
occurs in a timely and effective manner, several federal agencies, including the
Departments of Justice and Education and the Equal Employment Opportunity
Commission (EEOC), have committed funding to support training and techni-
PROVISIONS OF THE ADA
cal assistance for individuals working in disability-related fields to prepare them
The ADA further expands protections afforded persons with disabilities under
to use the legislation effectively in their service programs. These agencies have
the previously cited legislation. Specifically, the ADA prohibits discrimination
targeted funding primarily for individuals working in nonmedical rehabilitation
against persons with disabilities in several different areas, through its five titles.
fields, such as vocational rehabilitation and rehabilitation facilities administra-
Title I prohibits discrimination in employment based on disability. Its
tion, and disability consumer groups. They have also committed funding to
requirements took effect for employers with 25 or more employees on
programs designed to assist employers, public entities, and businesses to reach
July 26, 1992. Employers with 15 to 25 employees will be covered as of
compliance with the new legislative requirements.
July 26, 1993.
Notwithstanding the commitment of resources needed to prepare persons
Title II covers all activities (eg, transportation services, housing services,
in nonmedical rehabilitation fields for the ADA and its provisions, there has
public programs) of state and local government, and was effective on
been relatively little activity at the federal level to address the information needs
January 26, 1992. Subpart I of Title II requires accessibility on public transit
of medical and other health-related personnel. The basic provisions of the
systems in accordance with a timeline that specifies accessibility requirements
ADA should be required learning for all health professionals, and particularly
depending on the types of vehicles covered.
for those health professionals who treat persons with disabilities (eg, physical
Title III requires that public accommodations operated by private entities be
therapists, occupational therapists, audiologists, and speech pathologists). The
made accessible to persons with disabilities as of January 26, 1992. All public
contemporary health professional needs not only to be proficient in treatment
accommodations regardless of size are covered, but businesses with fewer than
of pathologic conditions resulting from injury and illness, but also skilled in
ten employees will not be subject to legal action for noncompliance until after
working with patients on issues that affect the quality of their lives. In the case
January 26, 1993. This section also requires that accessibility features are
of persons with disabilities, this means the provision of high quality diagnostic
included in alterations to public accommodations and commercial facilities
and therapeutic services, as well as effective advocacy with and for the individ-
beginning after January 26, 1992, and in construction of new buildings begin-
ual with a disability and his or her family members. These advocacy efforts
ning after January 26, 1993. Transportation provided by private entities must
should be directed toward ensuring that persons with disabilities participate in
also be made accessible; the requirements for newly purchased or leased vehi-
all activities and opportunities-including opportunities for employment and
150
Commentary
Journal of Allied Health, Summer 1992
151
access to public services, programs, and businesses in their communities. Such
legislation will emerge as the Department of Justice and the EEOC provide
efforts should also include educating persons with disabilities concerning the
technical assistance, and as disputes arising from challenges to the provisions
rights and remedies available to them through the ADA and other legislation.
of the Act are mediated and resolved. The legislation provides persons with
In many situations, the health care provider will be the first-and, in some
disabilities the tools to gain access to career opportunities previously denied
cases, the only-resource person with whom the individual with a disability
them. Health professional preparatory programs need to review their own
communicates.
admission criteria and standards to determine if they are illegally discriminating
Advocating effectively with and for persons with disabilities is not, however,
against applicants based on disability. Such programs should also assess any
the only ADA-related responsibility about which health professionals need to
other educational offerings that they provide directly or sponsor to determine
be concerned. They must also understand the impact that the ADA will have
how to provide access for persons with disabilities. This may involve modifying
on programs and services; this law applies to pre-employment professional
programs and providing aids that facilitate participation by persons with dis-
preparation programs as well as to postemployment service delivery programs.
abilities.
In the same way that allied health educational programs will need to exam-
ine accessibility to their programs for persons with disabilities, organizations
IMPLICATIONS FOR PROFESSIONAL CAREER ACCESS
that are involved in developing and administering qualifying examinations for
entry into occupational and professional fields should evaluate all these pro-
Increasingly, persons with disabilities demand that barriers to school, work,
cesses to assure optimal access for persons with disabilities. Section 36.309
and other activities of everyday life be removed by eliminating discriminatory
under Title III of the ADA regulations states:
practices. and architectural and communication barriers, and through reason-
able accommodations that allow otherwise qualified persons with disabilities to
Any private entity that offers examinations or courses related to appli-
perform job functions. In some cases, reasonable accommodation can be
cations, licensing, certification, or credentialing for secondary or post-
achieved through relatively simple measures, such as installing ramps for per-
secondary, professional, or trade purposes shall offer such exam-
sons with mobility impairments or installing amplifying FM sound loops for
inations or courses in a place and manner accessible to persons with
persons with hearing impairment. In other situations in which accommodation
disabilities or offer alternative accessible arrangements for such indi-
is costly, one can use dispute resolution processes to determine whether it is
viduals.
1(pllt.100)
reasonable in the given circumstance. For example, in the case of a request for
The regulation also states that examinations must be selected and administered
a qualified sign language interpreter to translate in a work setting, it may be
SO as to ensure that the results "accurately reflect the individual's aptitude or
determined that the cost of providing such services on an ongoing basis is an
achievement level or whatever other factor the examination purports to mea-
undue hardship on the employer. Such determinations would be made case-by-
sure, rather than reflecting the individual's impaired sensory, manual, or speak-
case involving considerations of several different factors including an assess-
ing skills (except where those skills are the factors that the examination
ment of the overall costs to the facility, the effect on the overall operation of
purports to measure).' "1 This requirement has tremendous implications for
the facility. and the resources available.
organizations engaged in entry-level and advancement testing related to allied
One term that appears in the ADA legislation but that has not been clearly
health fields. Organizations, such as the Educational Testing Service, must now
defined concerns the requirement found in Title III, that barriers in public
consider whether their tests and testing procedures offer equal opportunity for
accommodations must be removed where such removal is "readily achievable."
persons with various types of disabilities to demonstrate their mastery of
The term "readily achievable" was coined by Robert Burgdorf, the attorney
knowledge and skills required to secure professional qualifications. If current
who prepared the first draft of the ADA during his tenure at the National
testing materials and procedures do not offer such opportunities. then they
Council on the Handicapped (now the National Council on Disability). As
must be modified to accommodate persons with various types of disabilities.
recently pointed out by Burgdorf, "readily achievable" was statutory language
Entry-level tests for clinical fields that require specific sensory or motor skills
concocted during the ADA legislative negotiation process.⁹ The statute defines
which, in effect, exclude people with certain types of disabilities need to be
readily achievable as "easily accomplishable and able to be carried out without
reviewed to determine if the discriminatory criteria are actually necessary for
much difficulty or expense." A recent article cited the readily achievable
entry into that particular field. For example, the Physician Assistant National
requirement as an example of a broad, if not quite vague, standard
Certifying Examination (PANCE) consists of two parts: a written examination
(Washington Post. September 9, 1991:A14).
that could accommodate persons with sensory or motor impairments quite eas-
Inevitably, clearer definitions of what is meant by terms such as reasonable
ily, and a practical component, requiring the examinee to complete certain
accommodation, readily achievable, and other requirements set forth in the
diagnostic exercises that rely heavily on visual and auditory input. as well as on
152
Commentary
Journal of Allied Health. Summer 1992
153
motor skills. This second component of the PANCE might be very difficult to
More extensive modifications, such as enlarging bathrooms, moving weight-
modify to allow access by persons with certain types of disabilities. It would be
bearing walls, and installing electric doors might require substantially more
particularly difficult for persons with visual and auditory impairments to com-
investment on the part of the health care provider. The Architectural and
plete the practical component of the examination that requires interpretation
Transportation Barriers Compliance Board (ATBCB) has established the tech-
of visual data, such as readings of electrocardiograms, radiographs, or auditory
nical specifications for construction of or alterations to facilities that are
data, such as heart or bowel sounds. During the public comment phase of rule
deemed places of public accommodation or commercial facilities. With regard
making for the ADA, some commenters suggested that testing organizations
to new construction, any multilevel office building housing health care pro-
should be allowed to refuse to provide modifications or aids for persons seek-
viders must have an elevator, although other new buildings that are less than
ing to take examinations if those individuals, because of their disabilities, would
three stories in height and have less than 3,000 square feet of space per story
be unable to perform the essential functions of the profession or occupation
are not required to have an elevator. In other words, all multilevel, new office
for which the examination is given, or if it is decided in advance that the dis-
buildings that house any health care providers' professional offices will need to
ability is not an obstacle to testing for and acquiring certification.¹
have elevators, regardless of the number of stories or square footage in each
In responding to this comment, the US Department of Justice did not
story, if any of the office space above the ground floor level is intended for
change the rules with regard to examinations, and indicated that such exami-
patient care use by health care providers. Other requirements for door widths,
nations are but one stage of a licensing or certification process. An individual
restroom arrangements, and other access issues are clearly spelled out in the
should not be barred from attempting to pass any stage of the process merely
ADA Accessibility Guidelines (ADAAG) and in the Uniform Federal Accessi-
because he or she might be unable to meet other requirements of the process.¹
bility Standards (UFAS), both included in total in the ADA Handbook pre-
Many issues related to process modification for persons with different types of
pared by the US Department of Justice and the EEOC.'
disabilities, who are seeking entry into professions that have well-established
As in the case of new construction, alteration of existing facilities must also
certifying, licensing, and/or registry examinations, have not been resolved. It is
be in compliance with the ADA regulations. In general, these alterations need
safe to assume that many of the current methods for credentialing health pro-
to comply with the same requirements indicated for new construction. Speci-
fessionals will be challenged in court before such resolution occurs. In the
fication of these requirements and exceptions to the accessibility requirements
meantime. professional groups and testing organizations should take a close
for alterations to existing facilities are stipulated in the ADAAG and the UFAS
look at their credentialing processes and question whether these processes
guidelines.
may illegally discriminate against persons with disabilities. Some careful consid-
eration should be given to the efficacy of testing processes currently in use and
ways in which those processes might be modified to accommodate persons
CONCLUSION
with different disabilities.
The enactment of the ADA presents new challenges for health professional
schools and health care providers. More thought must be given to policies and
IMPLICATIONS FOR PROFESSIONAL SERVICE ACCESS
practices that, however well-intended, may be discriminatory. Educational
administrators need to examine admissions procedures and requirements to
Finally, health professionals need to work toward making their offices, clinical
determine if applicants are truly qualified to pursue specific types of studies, or
facilities, and other work-related areas fully accessible to persons with disabili-
if some requirements are not useful for making admissions decisions. These
ties. This might mean some structural changes in facilities that, more often
same administrators will need to look at ways to provide access to individuals
than not, can be accomplished at relatively modest costs. In many cases, instal-
with different types of disabilities who may be interested in pursuing health
lation of a ramp for wheelchair access or putting up braille signage for persons
professional studies, but who have functional or sensory limitations that may
with visual impairments can be done with little monetary investment. These
have excluded them from consideration for enrollment before passage of the
types of changes would be considered "readily achievable" for most health care
ADA. The excuse that a person might not be able to function in the job role is
providers. Also, purchasing and using a telecommunications device for the
no longer acceptable if the individual is "otherwise qualified" to pursue the
deaf (TDD) so that persons with communication impairments can call and
study program of interest. Many assumptions about the functional capabilities
schedule appointments and receive other information costs little. TDDs, with
of persons with different types of disabilities will be proven faulty once earnest
one-line digital read outs, can be purchased for less than $100 from durable
efforts are made to accommodate persons with disabilities.
medical equipment vendors and other vendors serving persons with communi-
At the same time, groups involved with credentialing examinations for the
cation impairments.
health professions will need to take a hard look at their examination processes.
154
Commentary
Journal of Allied Health. Summer 1992
155
In some cases, modifying examination processes for persons with certain types
that all other individuals have to pursue careers and engage in other vocational
of disabilities, such as motor function impairment, can be easily accomplished
and social activities. It is a challenge that the allied health professions should
simply by allowing more time to complete the examination. Other types of
welcome.
examinations that involve physical and practice skills, that exclude whole class-
es of persons with disabilities, will need to be scrutinized to determine the
necessity for such requirements at the examination stage. Requirements based
ADA TECHNICAL ASSISTANCE RESOURCES
on historical misconceptions and paternalistic assumptions concerning persons
with disabilities must be examined themselves before such requirements are
The ADA is a complex piece of legislation that requires considerable study for
allowed to stand.
full understanding. Recognizing that not everyone will have the time nor the
Finally, health professionals need to look at the manner in which they pro-
interest to fully explore the implications of the legislation for their professions,
vide their services and determine if their services are sufficiently accessible to
the federal government allocated funding to support regional technical assis-
all segments of the population who may need their services. Simple modifica-
tance centers for all ten federally designated US Department of Health and
tions, such as putting in short ramps and adding Braille signage can be easily
Human Services regions. Each of these centers has staff who are well-versed in
accomplished, as can the purchase of a telecommunications device that allows
the ADA and its provisions and can help business people, public agency repre-
communication-impaired individuals access by telephone. More costly accom-
sentatives, and persons with disabilities to understand what the ADA means to
modations, such as securing the services of sign language interpreters or
them. If you want more information about the ADA, or about its meaning to
enlarging restrooms should also be explored and, in some cases, outside fund-
you as a health practitioner or educator, you should contact the regional tech-
ing for such services or facility modifications can be secured and costs can be
nical assistance center serving your state or call (800) 949-4232. The names,
offset in whole or in part through tax incentives available to businesses that
locations, and telephone numbers of these centers are provided
make access improvements.
Additional information on legal issues and the ADA can be obtained from
Accommodating persons with significant disabling conditions is not without
the Disability Rights Education and Defense Fund (DREDF) at 2212 Sixth
cost, in terms of both effort and dollars. Such accommodations will not occur
Street, Berkeley, California 94710, (415) 644-2555, and additional informa-
tion on other sources of technical assistance on the ADA and its provisions
without deliberate efforts by practitioners, educators, and policy makers to
can be obtained from the Independent Living Research Utilization Program,
examine current practices and seek creative solutions to problems that con-
tribute to exclusion. The price that we will pay for inclusion of persons with
2323 South Shepherd, Suite 1000, Houston, Texas 77019, (713) 520-0232.
disabilities is insignificant in comparison to the rewards that will be reaped. As
was the case with affirmative action efforts to enhance opportunities for peo-
ple from minority groups, women, and older individuals, the benefits to be
Regional ADA Technical Assistance Centers
gained from ensuring access for disabled persons to educational and profes-
Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island,
sional opportunities and services will enrich those professions that make such
Vermont
efforts. These efforts will open doors to many individuals who can contribute
University of Southern Maine
significantly to allied health research, education, and service activities.
Muskie Institute for Public Affairs
Although the example of Stephen Hawking, the great English physicist who
96 Falmouth Street
has a severe disability associated with allotropic lateral sclerosis, may perpetu-
Portland, Maine 04103
ate the image often projected in the media which tends to focus on people
(207) 780-4430
with disabilities who achieve extraordinary feats, it does represent the epitome
of the types of contributions that can be made by persons with disabilities
when effective accommodation for their disabilities is made. While not every-
Region II: New Jersey, New York, Puerto Rico, the Virgin Islands
one with a disability has the extraordinary intellectual capabilities of Stephen
United Cerebral Palsy Association of New Jersey
Hawking, every person, regardless of whether he or she has a disability, must
354 South Broad Street
be given the opportunity to contribute to his or her community and to society
Trenton, New Jersey 08608
as a whole. Changing attitudes and fostering understanding about the capabili-
(609) 392-4004
ties of persons with disabilities, SO that everyone has an opportunity to partici-
pale in the professional pursuits of his or her choice, will enrich everyone. The
ADA is about enabling persons with disabilities to have the same opportunities
156
Commentary
Journal of Allied Health, Summer 1992
157
Region III: Delaware, Maryland, Pennsylvania, Virginia, Washington, DC,
Region IX: Arizona, California, Hawaii, Nevada, the Pacific Basin
West Virginia
Berkeley Planning Associates
Independence Center of Northern Virginia
440 Grand Avenue, Suite 500
2111 Wilson Boulevard
Oakland, California 94610
Arlington, Virginia 22201
(415) 465-7884
(703) 525-3268
Region X: Alaska, Idaho, Oregon, Washington
Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina,
Washington State Governor's Committee
South Carolina, Tennessee
212 Maple Park KG-11
United Cerebral Palsy Association; The SMART Exchange
Olympia, Washington 98504
1776 Peachtree Street, Suite 310 North
(206) 438-3168
Atlanta, Georgia 30309
(404) 888-0022
REFERENCES
Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin
1. Equal Employment Opportunity Commission and the US Department of Justice.
University of Illinois at Chicago
Americans with Disabilities Act Handbook. Washington, DC: Government
University Affiliated Program in Developmental Disabilities
Printing Office; 1991:1,III.100.
1640 West Roosevelt Road
2. Thompson Publishing Group, Inc. Americans with Disabilities Act: Compliance
Guide. Washington, DC: Thompson Publishing Group; 1990.
Chicago, Illinois 60608
3. 42 USC $4151-4157. (1977 and West Supplement 1990).
(312) 413-1647
4. 20 USC $1400-1485. (1990).
5. 29 USC §791. (1985 and West Supplement 1990).
Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas
6. 29 USC §792. (1985 and West Supplement 1990).
7. 29 USC §793. (1985 and West Supplement 1990).
ILRU Program
8. 29 USC §794. (West Supplement 1990).
The Institute for Rehabilitation and Research
9. Burgdorf R. The Americans with Disabilities Act: analysis and implications of a sec-
2323 South Shepherd, Suite 1000
ond-generation civil rights statute. Harvard Civil Rights/Civil Liberties Law Rev.
Houston, Texas 77019
1991;26(2):413-522.
(713) 520-0232
Region VII: Iowa, Kansas, Missouri, Nebraska
University of Missouri at Columbia
401 East Locust Street
Columbia, Missouri 65201
(314) 882-3807
Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah,
Wyoming
Meeting the Challenge, Inc.
3630 Sinton Road, Suite 103
Colorado Springs, Colorado 80907
(719) 444-0242
158
Commentary
Journal of Allied Health, Summer 1992
159
02:08PM TIFF SKEPIT
P.199
9 pages totre
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Merchaship
Director)
cli,The
468 of ReDab
Medicine.
insudore Dola, M.D. (013) 936-7190
David B. Gray, Ph.D. (301) -02-2242
Justin W. Dart, Jr. (202) 488-7684
William Graves, Ph.D. (202) 732-1134
DUSILE Alexander, M.D. (301) 496-3454
Donaldo I. Jalvan, FM.D. (202) 408-9320) home: (202) 966-4674
Three Bacher, Ph.D. (714) 338-4156; home: (318) 501-5433
:. Leon Thornton ( (501) 624-4411
Bak Leargy Ph D. (419) 966-3351 '89 ACRM
the (107) 235-2770 or 2575
4109-806 (2TS) :Q'N (spey
L. Gordon; R.N. T.N.SC
00 1. Zrieschmann, Ph.D. D. (602) 998-5944
2001 T. Guanger, M.D. (715) 845-2201 '89 ACRM
2. Parker ( (410) 965-3424; home: (301) 554-5200
Horrison, Fh.D. (703) 648-9300; home, (301) 998-7795
Some, Ph.D. D. (516) 550-5782
I. King Jordan
Steven A. Schroader M.D. (509) 452-3701
Rick Roeseler
Greenwood (302) 575-1-54
-rd
6.
Bush Library Photocopy Preservation
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ADVISORY BOARD
Advisory Board Members
Peter W. Axelson, M.S., M.E.
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Executive Director of Research
Professor
and Development
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Beneficial Design Inc.
College of Associated Health Professions
5858 Empire Orade
The University of Illinois at Chicago
Santa Cruz, California 95060
1919 W. Taylor Street, M/C 898
(408) 429-8447
Chicago, Minois-50612
(408) 423-8450 FAX
(312) 996-1502
(312) 996-3807 FAX
Carolyn M. Baum, M.A., O.T.R
F.A.O.T.A.
Edmund Yee-Su Chao, Ph.D.
Elias Michael Director and Assistant Professor
Director
in Occupational Therapy and Neurology
Orthopedic Biomechanics Laboratory
Washington University School of Medicine
Mayo Clinic
Program in Occupational Therapy
200 First Street, S.W.
4567 Sectt Avenue - Internal Box 8066
Rochester, Minnesota 55905
St. Louis, Missouri 63110
(507) 284-2588
(314) 362-6911
(507) 284-5392 PAX
(314) 362-9862 FAX
Theodore Cole, M.D.
Carol Bennert MD
Professor
Chief of Urology
Department of Physical Medicine and
Rancho Los Amigos Medical Center
Rehabilitation
7601 East HB 132
University of Michigan Hospitals
Downey, California 90242
University of Michigan
(213) 940-7437
1500 E. Medical Center Drive
(213) 843-6143 FAX
Ann Arbor, Michigan 48109-0042
(513) 936-7190
Henry Betts, M.D.
(513) 936-6121 FAX
Medical Director and Chief Executive Officer
Rehablitation Institute of Chicago
Robert E. Cooke. M.D.
Room 1573
Professor Emeritus of Pediatries
345 East Superior Street
State University of New York
Chicago, Illinois 60611
at Buffalo
(312) 908-6017
Director Emerious
(312) 908-4300 FAX
Robert Warner Rehabilitation Center
865 Painted Bunding Lane
John H. Bowker, M.D.
Vero Beach, Florida 32963
Professor
(407) 234-1707
Department of Orthopaedics
and Rehebilitation
Lex Frieden
University of Miami
Senior Vice President
School of Medicine
TIRR
P.O. Box 016960 (D-27)
Baylor College of Medicine
Miami, Florida 33101
1333 Moursund
(305) 585-6371
Houston, Texas 77030
(305) 324-7658 FAX
(713) 797-5285
(713) 799-7095 FAX
Bush Library Photocopy Preservation
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John Goldschmidt, M.D.
Peter W. Thomas, Esq.
Director
General Council
Rehabilitation R&D Services (117A)
White, Verville, Fulton and Saner
Department of Veteran Affairs
Suite 1100
$10 Vermont Avenue N.W.
1156 15th Street, N.W.
Washingron, D.C. 20420
Washington, D.C. 20005
(202) 535-7278
(202) 659-2900
(202) 535-7497 FAX
(202) 659-2909 FAX
Dorothy L. Gordon, D.N.Sc., R.N., F.A.A.N
Roberta B. Trieschmann, Ph.D.
D
Associate Dean of Graduate Affairs
Consulting Psychologist
The Johns Hopkins University
President RBT Association, Inc.
School of Nursing
P.O. Box 5566
600 North Wolfe Street
Sconsdale, Arizona 85261
Baltimore, MD 21205
(602) 998-5844
(410) 955-7758
(602) 998-5840 FAX
(410) 955-0466 FAX
George A. Zimay, Ph.D.
Carl Granger, M.D
President/CEO
Professor of Rebabilitation Medicine
National Head Injury Foundation. Inc.
State University of New York
1776 Massachusetts Avenue. N.W.
82 Farber Hailm. South Campus
Suite 100
Buffalo, NY 14214
Washington, D.C. 20036
(716) 831-2076
(202) 296-8850
(716) 831-2080 FAX
(202) 296-8850 FAX
Judith Heumann M.P.H.
Vice President
National and International Affairs
Ex-Officio Members
World Institute on Disability
510 16th Street - Suite 100
Duane Alexander. M.D.
Oakland. California 94612
Director
(510) 763-4100
National Institute of Child Health
(510) 763-4109 FAX
and Human Development
National Institutes of Health
Rebadca Ogle
Room2A04, Building 31
Adult Program Coordinator
9000 Rockville Pike
Spina Birida Association of America
Bethesda, Maryland 20892
4590 MacArchur Boulevard. N.W.
(301) 496-3454
Suite 250
(301) 402-1104 FAX
Washington. D.C. 20007
(202) 944-3285
Praxedes Belandres, M.D.
(202) 994-3295 FAX
Physical Medicine Department
Walter Reed Army Medical Center
Herbert Schaumberg M.D.
Department of Defense
Chairman of Neurology
6900 Georgia Avenue
Albert Einstein College of Medicine
Washington, D.C. 20307
1300 Morris Park Avenue
(202) 576-1368
Bronx, New York 10461
(202) 576-2478 FAX
(212) 430-3166
(212) 931-2476 FAX
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713
4
Larry Burt
Leslie Ford, M.D.
Manager
Chief
Disability Prevention Program
Community Oneology
Center for Disease Control
and Rehabilitation Branch
4770 Buford Highway
National Cancer Institute
F29
EPN, Room 300 D
Adanta, Georgia 30341
Rockville, MD 20852
(404) 488-7080
(301) 496-8541
(404) 488-7075 FAX
(301) 496-8667 FAX
Nell Carney
Peter Frommer, M.D.
Commissioner
Deputy Director
Rehebilitation Services
National Heart. Lung and Blood
Administration
Institute
Office of Special Education and
Nadonal Institutes of Health
Rehabilitative Services
Building 31, 5A49
U.S. Department of Education
9000 Rockville Pike
Room 3023. M.E. Switzer Building
Bethesda, MD 20892
330 "C" Street
(301) 496-1078
Washington. D.C. 20202
(301) 402-0299 FAX
(202) 732-1331
(202) 732-1372 FAX
Murray Goldstein. D.O.M.P.H.
Director
James Cooper M.D.
National Institute of Neurological
Director
Disorders and Swoke
Cardiovascular Section
Building 31A Room 8A52
National Insiture on Aging
9000 Rockville Pike
Cateway Build Room 3E327
National Institute of Health
Bethesda MD 20892
Bethesda. MD 20892
(301) 496-6761
(301) 496-9746
(301) 402-1784 FAX
(301) 496-0296 FAX
Judith A. Cooper, Ph.D.
Patricia A. Grady. Ph.D.
National Institute on Deafness and
Assistant Director
Other Communication Disorders
National Institute of Neurological
National Institute of Health
Disorders and Stroke
EPS, 400B
National Institutes of Health
6120 Executive Boulevard
Bldg. 31, Room 8A52
Rockville, MD 20892
Bethesde, Maryland 20892
(301) 496-5061
(301) 496-3167
(301) 402-6251 FAX
(301) 496-0296 FAX
Timothy R. Dillingham, M.D.
William H. Graves. Ed.D.
Director of Research for Physical Medicine
Director
Walter Read Army Medical Center
National Institute on Disability and
6900 Georgia Avenue, NW
Rehabilitation Research
Washington, D.C. 20307
Office of Special Education and
(202) 576-1368
Rehabilitative Services
(202) 576-2478 FAX
U.S. Department of Education
400 Maryland Avenue, S.W.
Washington, D.C. 20202-2572
(202) 205-8134
(202) 205-8997 FAX
Bush Library Photocopy Preservation
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Dov Jaron, Ph.D.
Director
Biological and Critical Systems Division
National Science Foundation
1800 "G" Street, N.W.
Room 1132
Washington, D.C. 20550
(202) 357-9545
(202)357-9803 FAX
Katherine D. Seelman, Ph.D.
National Council on Disability
800 Independence Avenue, S.W.
Suite 814
Washington, D.C. 20591
(202) 267-3846
(202) 453-4240 FAX
Lawrence E. Shulman, M.D.
Director
National Insitute of Arthritis and
Musculoskeletal and Skin
Diseases
National Institute of Health
9000 Rockville Pike
Room 4C32 Bldg 31
Berhesda, MD 20892
(301) 496-4353
(301) 480-6069 FAX
James B. Snow In M.D.
Director
National Institue on Deafness and
Other Communication Disorders
National Institute of Health
Bethesda, MD 20892
(301) 496-6595
(301) 402-1590 FAX
Pamela Starke-Reed. Ph.D.
Director
Physical Functioning and Performance Section
National Insitute on Aging
Gateway Building. Room 3E327
Bethesda, MD 20892
(301) 496-6761
(301) 402-1748 FAX
Bush Library Photocopy Preservation
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P.4/9
Subject
Pol./Proc. No.
CHAIRMAN GUIDELINES FOR
APPOINTMENTS AND PROMOTIONS
PROC-F-3010
Function PROCEDURE - ACADEMIC
Page 2 of 9
Baylor College of Medicine
Date 9/12/88
Date Rev
Rev. No.
Policy and Procedure
Prepared By
Approved By
FACULTY APPOINTMENTS AND
PROMOTIONS COMMITTEE
EXECUTIVE FACULTY
1. For promotion to the unqualified appointments of Professor or
Associate Professor: These letters should come from review-
ers external to BCM and, if possible, outside of the local
area. Although there is no limitation on the number of
letters, from either ECM OF other sources, the non-BOM review
must include:
a. at least three (3) letters for appointment/promction to
the rank of Associate Professor,
b. at least six (6) letters for appointment/pronotion to
the rank of Professor.
21 For promotion to the unqualified appointments of Professor of
Clinical (specify department) or Associate Professor OF
Clinical (specify department) : These letters should come
from persons of substantial professional standing who have
direct knowledge of the applicant's activities. They may
comp in part from the applicant's department, other depart-
ments in the College, from others in the local area and when
possible, from national or international sources. These
letters must include:
a. at least three (3) letters for appointment/promction to
the rank of Associate Professor of Clinical X, at least
two (2) of which must come from outside Baylor,
b. at least six (5) letters for appointment/pronotion to the
rank of Professor of Clinical X, at least four (4) of
which must come from outside Baylor.
C. A Curriculum Vitae prepared by the candidate in the form of the
Outline required by the Faculty Appointments and Promotions Com-
mittse must accompany the request. Requests which include a CV
which is not in accord with these guidelines will be returned to
the Department.
D. The Department Chairman or a designee should be prepared to appear
before the Comuttee and provide E brief presentation of the
candidate. The presenter may be requested to respond to Committee
questions bafore and after closed deliberations by the Committee.
The Committee will deliberate and pl vote will be taken to approve,
disapprove or defer a departmental request; a deferral will occur
primarily to allo. for the acquisition of additional information.
Bush Library Photocopy Preservation
Pol./Proc.No.
Subject
CHAIRMAN GUIDELIN
APPOINTMENTS AND PROMOTIONS
PROC-F-3010
Function
PROCEDURE - ACADEMIC
Page 1 of 9
Baylor College of Medicine
Date
Date REV
Rev No.
9/12/88
Policy and Procedure
Prepared By
Approved %
FACULTY APPOINTMENTS AND
PROMOTIONS COMMITTEE
EXECUTIVE FACULTY
CHAIRMAN FOR APPOINTMENTS $27 PROMOTIONS
A.
A letter from the departmental chairman/division head must be sent
to the Executive Vice President and Dean of the Medical School.
This letter should summarize the cardidate's academic career with
special attention to outstanding achievements, honors or unusual
contributions or potential contributions to Baylor College of
Medicine. This letter, or an attachment to it, should include:
1. A summary of the candidate's main research contributions.
Triplicate reprints or photocopies of his/her most represen-
tative publications must accompany this request as follows:
Appointment/promotion to rank of:
Number of Publications
Associate Professor of Clinical X
2
Associate Professor
3
Professor cf Clinical X
4
Professor
6
2.
A summary of the candidate's yearly teaching duties relative
to:
a. didactic courses, clinical conferences and/or runds,
b. hours of formal or informal teaching,
C. number of students, fellows, residents, et: al,
d. evaluation of teaching performance.
3.
A summary of candidate's service to:
a. department (and section),
b. Baylor College of Medicine,
C. community of Houston,
d. state of Texas (and region),
e. national and/or international committees/organizations.
in
Letters of evaluation from national or international experts in
the candidate's field of endeavor must accorpany the departmental
request.
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