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MICHIGAN STATE
FOUNDED
UNIVERSITY
1855
INDEPENDENT LIVING PROJECT
Report on Phone Interviews
by
Denise G. Tate, Ph.D.
and
Owen Dailey
June, 1980
UCIR
UNIVERSITY CENTERS
FOR INTERNATIONAL
REHABILITATION
USA/MICHIGAN STATE UNIVERSITY
INDEPENDENT LIVING PROJECT
Report on Phone Interviews
Purpose
To maximize the domestic utilization of data related to inde-
pendent living which will be retrieved from other countries under
UCIR's Independent Living project, a series of phone interviews
were made in January, March, and April, 1980 with selected knowl-
edgeable informants on independent living. Basically, the purpose
of the interviews was twofold: (1) to determine specific reactions
of respondents on various independent living issues that have been
generated through a literature review and contacts with consumer
groups at the local level; and (2) to identify other issues besides
those indicated in (1) above that the respondents consider perti-
nent to independent living.
Information obtained through the phone interviews will indicate
the areas on which to retrieve information from foreign countries.
It is expected that such information can be applied in the U.S. to
areas of need in independent living.
Panel of Interviewees
The panel of interviewees consisted of consumers, advocates,
administrators, researchers, and service providers in the U.S. The
following persons were interviewed:
Lex Frieden
- Director of New Options Program, Texas Insti-
tute of Rehabilitation Research
William Bean, Ph.D. - Special Assistant of HEW's Independent Living
Project, Rehabilitation Services Administration
2
Len Sawisch, Ph.D. - Coordinator of Consumer Development of the
Michigan Bureau of Rehabilitation
Gini Laurie
- Editor of Rehabilitation Gazette
Pat Duford
- Director of the Center for Independent Living,
Ann Arbor, Michigan
Gerben DeJong, M.S. - Acting Director of Research at Research & Train-
ing Center, Tufts-New England Medical Center
Duncan Wyeth
- Former Director of the Center for Handicapped
Affairs, Lansing, Michigan
Jean Cole, Ph.D.
- Director of Training for Texas Institute for
Rehabilitation Research
Woody Carnes, Ph.D. - Chief of Psychology Services of the Truman
Memorial Medical Center
Helen Goodkin
- Director of Independent Living Project at
Rehabilitation Institute of Chicago
Fred Fay, Ph. D.
- Research Director at the Research & Training
Center, Tufts-New England Medical Center
Procedure
Participants received a letter explaining the purpose of the
interview and questions to be asked over the phone approximately two
weeks before the calls occurred. A copy of the letter is shown in
the Appendix 1 of this report. A standard interview format was de-
veloped to be utilized during the calls. As described in the format,
the phone interview has 2 main objectives. Interviewees were first
familiarized with the purpose of the Independent Living project, they
were then asked about areas of concern in the U.S.
Objective 1: To discuss, better define and prioritize U.S.
areas of concern in independent living, on which
information from other countries could be helped
in finding solutions.
3
Objective 2: To identify foreign contacts and their addresses.
Questions asked during the interview were:
1. We had identified 5 major areas of concern through a liter-
ature review and contacts with consumers at a local level.
These are: eligibility for services, organization and pro-
vision of services, cost of services and funding, expected
outcomes, evaluation of services and accountability. Would
you see these areas as especially important to consumers?
(Participants were provided with a brief description of
each area in the letter sent to them previous to the calls.)
2. Would you identify other areas or define these differently?
3. Which ones would you consider most important, in terms that
information obtained from other countries could bring
possible solutions to these concerns?
4. We are looking for names of persons from other countries that
may be able to either address to these areas of concern or
to write about the state-of-the-art of independent living in
their country or that would refer this study to some other
experts in the field interested in cooperating with the pro-
ject. Is there any names or organizations that you could
think of that could be contacted for these purposes?
A copy of the interview format is presented in Appendix 2. Each
interview had the duration of approximately 20 minutes. The inter-
viewer took notes during the interviews. Only one interview was tape
recorded. Notes were then transcribed in more details right after
the conclusion of the phone conversation. In most cases, partici-
pants had to be contacted only once.
Summary of Responses
Although most respondents thought that all five categories or
areas of concern in independent living were important, organization
and provision of services did receive more emphasis than the other
four areas. Table 1 below presents the issues cited most frequently
during the interviews.
4
Table 1. Information on Independent Living From
Other Countries Cited Most Useful Domest-
ically by a Panel of Knowledgeable In-
formants
No. of Times an
Issue was Men-
tioned as Import-
Areas of Information Need
ant
Organization and provision of services
6
Eligibility and priority of services
5
Expected outcomes
4
Evaluation of services and accountability
2
Cost of services and funding
1
Consumer involvement
6
Definition and operationalization of IL
3
Disincentives
1
Training & staffing of CIL
1
Attitudes regarding disabled citizens
2
Liability issues
1
IL programs for MRs and developmentally
disabled persons
2
Historical development of programs, e.g.,
from advocacy to service
1
Some comments related to the 5 areas previously identified were:
Eligibility and Priority of Services -
"one of the issues is
that eligible people are being denied services
"
"all individuals given that he/she has a limitation should be
entitled to services
"
5
"one of the things I would want to find out from other
countries is what types of individuals are being served, namely a
disability group for instance, spinal cord injured, do they repre-
sent a whole cross-section of disability, are services primarily for
blind persons, or persons with hearing impairments? "
Organization and Provision of Services - ... "main issue here is
that consumers are operating on the basis of a concept for inde-
pendent living and that agencies are taking over, but consumers want
to run their own programs "
"another issue in which information from other countries can
be useful is different models for service provisions what are some
of the models that are being used in other countries? Are they tran-
sitional or residential types of models? If residential, do they
offer all sorts of supportive services, who provides these serv-
ices? "
"services provided by various organizations in this country
are usually not coordinated "
"one thing I would want to find out is whether or not dis-
abled persons themselves are involved in the administration and
delivery of services "
Expected Outcomes - ... "consumers expect the program to be re-
sponsive to their every day need and goal; the more structure is
provided in the prognosis the less responsive the client becomes "
"outcomes should be left up to handicappers to decide on
this can be done by allowing the handicapper to establish his/her
outcome and then proceed to negotiate it with the counselor "
6
Evaluation of Services and Accountability - "a third party
should be involved in the evaluation, in addition to the consumer and
the rehabilitation agency "
"what is the role of disabled people in the evaluation of
programs?
in this country according to the requirements from the
federal government, programs have to be evaluated so far, in the
U.S., independent living is coming under vocational rehabilitation,
the criteria for evaluation is very restricted and reflects most of
all VR services "
In summary, the issues and questions outlined during the phone
interviews are organized under the following categories of informa-
tion:
CATEGORY
ISSUES AND QUESTIONS
Definition and Philosophy of
How is the concept defined?
Independent Living
What is the philosophy behind
this concept?
Does the same concept or defi-
nition apply to a third world
country?
Programs Services and Char-
How are programs in other coun-
acteristics
tries? Are they mostly resi-
dential, transitional or self-
help models?
This category includes: or-
Are programs mostly consumer man-
ganization and provision of
aged or managed by an able-bodied
service, eligibility and pri-
professional staff?
ority of services, expected
Who provides transportation and
outcomes, evaluation and
housing? What is provided?
accountability, cost of
Are programs mostly of an advo-
services and funding and
cacy type or service delivery
other issues added by parti-
type?
cipants which relate to
Do programs focus more in rehab-
service and programs.
ilitation and improvement or are
programs geared toward mainten-
ance of a status "quo"?
What are some new models of serv-
ice delivery?
What has been done in terms of
architectural barriers?
7
CATEGORY
ISSUES AND QUESTIONS
Program Services and Character-
Which group is being served more
istics (Cont'd.)
efficiently?
What is the subset of the pop-
ulation being served?
Developmentally disabled groups
are very concerned that they
don't have services tailored for
their needs.
Consumer Participation
What is role of consumers in pol-
icy, service delivery and evalua-
tion?
Consumer input on statewide faci-
lities is almost zero. How is it
in other countries?
What are the rights of consumers
in other countries?
Is there any legislation such as
504?
There is a shortage of consumer
skills for business management in
the U.S.
Staff Training
There is need for special train-
ing for attendant care personnel.
There is need to prepare staff to
work in CIL's.
There is need to provide train-
ing to consumers to deal with
managerial types of roles.
Attitudes
Is there a difference in how the
disabled is viewed if they work
or if they don't work?
Disincentives
What kinds of incentives, cash
benefits or other benefits people
that work or don't work receive
in various countries?
Participants interviewed showed a great interest on what is
being accomplished internationally in the area of independent living
services to the severely disabled. In addition to their experience in
the U.S., at least 50% of the participants have considerable inter-
national experience in issues of consumer involvement and independent
living. Participants responses are described more fully in Appendix 3.
APPENDICES
MICHIGAN STATE UNIVERSITY
UNIVERSITY CENTERS FOR INTERNATIONAL REHABILITATION
EAST LANSING
MICHIGAN
48824
.
USA
D-201 WEST FEE HALL
TELEPHONE (517) 355-1824
APPENDIX 1
February 19, 1980
Dear Sir/Madam:
Currently UCIR is initiating a project to retrieve and disseminate on an
international scale information about independent living. This project
reflects the ideas proposed at our 1979 Needs Prioritization and Action
Planning Conference, where participants expressed the importance of ex-
changing information and research data internationally on this theme.
Retrieval and dissemination of such data is intended to assist consumers,
service providers, researchers, and planners in determining approaches
that better address the needs of severely disabled persons.
We have identified a number of countries now active in providing services
to this population. These countries include Canada, England, Sweden,
the Netherlands, Denmark, West Germany, and Australia, as well as Finland,
Japan, Yugoslavia, Brazil, Costa Rica, Norway, and Switzerland. We plan
to contact organizations and individuals in these countries in order to
prepare a collection of articles authored by native consumers and advo-
cates. The information to be collected will be packaged and disseminated
both here and abroad.
In developing this project, we are looking first to those persons most
closely involved with independent living in the United States. UCIR's
program director, Dr. Donald E. Galvin, has recommended writing you in
the hope that you will help us to identify primary areas of concern and
critical issues to ensure that the information collected will be useful
for the domestic rehabilitation community.
MSU IS AN AFFIRMATIVE ACTION/EQUAL OPPORTUNITY INSTITUTION
College of Education
College of Osteopathic Medicine
Center for International Studies and Programs
February 19, 1980
To date, through a literature review and through contacts with local con-
sumer groups, we have identified five major issues in independent living:
1. Eligibility criteria and priority for services;
2. Organization and provision of services (historical
development, current status, current problems,
projected solutions);
3. Expected outcomes;
4. Costs of services and funding; and
5. Evaluation of services and accountability
(methods most applicable, parties to be
held accountable).
I would welcome your suggestions for expanding and refining this list.
Specifically, we would appreciate your response from the following per-
spectives:
- Would you view these issues as equally important
to consumers?
- Would you identify other issues or define the
above differently?
- For which areas is information from other countries
likely to prove most worthwhile?
We would also appreciate your recommending the names and addresses of
persons and organizations, foreign or domestic, who may be interested
in participating in this project. I will be contacting you soon by
telephone to request your feedback on the above. I look forward to
speaking with you. I hope you will be able to assist us.
Sincerely,
Devix G. Tate
Denise G. Tate, Ph.D.
Research Associate
DGT/eb
cc: Dr. Galvin
APPENDIX 2
INDEPENDENT LIVING PROJECT
Format for a Phone Interview
Purpose of the project:
UCIR is currently developing a project in the area of independent
living. The basic purpose of this project is to retrieve and dis-
seminate information which will assist consumers, service providers
and planners in determining approaches that better serve the needs of
severely disabled people.
In developing this project we want to look not only to the state
of art of independent living in the U.S. and therefore identify from
consumers and centers for independent living areas of concern or
critical issues regarding independent living, but also what other coun-
tries are doing in terms of serving the severely disabled and specifi-
cally how they are dealing with these areas of concern.
We have identified a number of countries that have been quite
active in terms of serving the severely disabled and we would like
to include these in our study. These countries include:
-Canada
-England
-Sweden
-Netherlands
-
-Denmark
-W. Germany
and others (Finland
Japan
Yugoslavia
Brazil
Costa Rica
Norway
Switzerland)
My purpose in contacting you today is twofold:
1. I would like to get your reactions about some of the possible
areas of concern in independent living where information
2
to be collected abroad that may benefit consumers and service
providers in general.
2. To ask you for some suggestions of names and addresses of
persons abroad that we may contact to obtain the infor-
mation relevant to this project.
Objective 1:
To discuss, better define and prioritize areas of concern
We had identified 5 major areas of concern through a literature
review and contact with consumers at a local level. These are:
1. Eligibility and Priority for Services (what is the criteria
or definitions adopted to accept and reject clients for
services. Who receives priority for services?).
2. Organization and Provision of Services (how are services
organized, how this organization could be improved to better
serve the severely disabled and what types of services are
provided or should be provided).
3. Cost of Services and Funding (this deals with the whole
approach of cost and benefit analysis or cost effectiveness
and funding deals with mechanisms to secure funding for the
centers or similar types of organizations).
4. Expected Outcomes (what are the outcomes expected from the
individual as he goes into the program or receives inde-
pendent living services).
5. Evaluation of Services and Accountability (how do we approach
the evaluation of such services to determine whether they
are effective or not and who is to be accountable for the
success of a center or program for independent living, the
consumer, the rehabilitation professional, the sponsoring
agency which provides funding?).
Would you see these areas as equally important to consumers?
Would you identify other areas or define these differently?
3
Which ones would you consider most important, in terms that
information obtained from other countries could bring possible solu-
tions to these concerns?
Objective 2:
To identify foreign contacts and addresses
We are looking for names of persons from other countries that
may be able to either address to these areas of concern or to write
about the state-of-the-art of independent living in their country
or that would refer this study to some other experts in the field.
Is there any names or organizations that you could think of that
could be contacted for these purposes?
APPENDIX 3
Information on Independent Living
From Other Countries Which Could
be Useful Domestically, UCIR, 1980
Respondent No.
Areas of Information Need
1
3/19/80
1. How is independent living defined?
2. What service delivery models are in use?
e.g. residential? transitional? etc.
3. What is the primary program thrust--
to eliminate or reduce physical barriers
or to reduce mostly attitudinal barriers?
4. Are there community-based programs or
are programs mainly residential?
5. Are programs generally oriented towards
the delivery of services, a combination
of services and advocacy, or mainly
advocacy?
6. What developmental path, if any, do most
programs go through, e.g. starting with
a militant and advocacy orientation to
a later pre-occupation with the delivery
of services?
7. Basically, how are services organized
and provided?
2
3/19/80
1. What is the role of the consumer parti-
cularly in the management aspects of
consumer controlled or guided projects?
2. How is independent living manifested in
Third World countries? Do they believe
in "independence"? How is "independence"
perceived?
3. What are peoples' attitudes toward the
working and the non-working disabled
individual who receives independent
living services?
4. Are there "disincentives" to employment
in other countries?
5. How are services provided and organized?
2
Respondent No.
Areas of Information Need
3
3/4/80
1. How should services be organized and
provided such that they are responsive
to the needs of consumers?*
2. How does one tackle questions on eligi-
bility and priority where agencies and
consumers hold varying viewpoints on
IL, and expected outcomes?**
4
3/6/80
1. Definition of independent living.
2. Independent Living cannot be defined in
terms of services provided at resident-
ial centers.
3. Differences in what disabled people in
the U.S. and other countries consider
important in their lives, hence the need
to qualify the domestic usefulness of
information from overseas.
5
7/7/80
1. Services provided by various organiza-
tions not well coordinated. ***
2. Attaches equal importance to issues
cited. (in questionnaire)
3. Believes there is very little other
countries can offer by way of IL
information that would be useful
domestically.
*Contends that consumers have almost no input in state-wide facilities. Handicappers
conceive of IL as an alternative to the existing rehabilitation system. However,
where IL services are increasingly coming under the agencies' domain, handicappers
may lose what little freedom and control they have gained over decisions affecting
their lives.
**Observes that eligible people are being denied services. Believes that outcome needs
to be situationally defined, varying from one person to another, depending on that
person's individual circumstances. Additionally, the individual should be actively
involved in determining his or her outcome on the basis of which one's individual
progress is to be evaluated. Where outcomes are uniformly set by an agency, handi-
cappers tend to be less responsive.
*Domestic issue.
3
Respondent No.
Areas of Information Need
6
4/10/80
1. What disability groups are being served?
Or, are services geared to individuals
with specific disabilities, or oriented
to those who are severely disabled irre-
spective of the type of disability?
2. Are disabled persons involved in the
administration and delivery of services?
3. What is the country's level of con-
sciousness regarding the needs of its
disabled citizens, e.g. is there at
least some kind of enabling legislation
that expresses a commitment to meet the
needs of the disabled population?
4. Where independent living services are
provided, are they meeting the needs of
the disabled based on the latter's
perspectives?
5. Are independent living programs also
responsible for developing the employ-
ment skills of their target population?
7
3/19/80
1. Gives priority to issue on "eligibility";
believes that all individuals with
limitations are entitled to services.*
2. An array of models are available domes-
tically with respect to the organization
and provision of services.
3. While both handicapper and provider are
equally responsible for the evaluation
of services and questions of accounta-
bility, the process of evaluation should
involve a third party.
4. Organizational aspects of IL programs
and effectiveness of various programs.
*Domestic issue.
4
Respondent No.
Areas of Information Need
8
1/25/80
1. How have the following concerns been
dealt with in other countries?
(a) Staffing of CILs?
(b) Training consumers for
managerial roles?
(c) Training for attendant care
and peer-counselor roles?
(d) Liability issues?
(3) Decision-making process for
MR and developmentally dis-
abled individuals who are
so severe that they cannot
make decisions by them-
selves: is it ethical to
decide for them?
9
1/25/80
1. What types of activities are consumer
organizations involved in?
10
3/14/80
1. What service delivery models are in use?
2. How are transportation and housing
concerns organized? Are they both part
of one program, or are they handled
by separate entities?
3. How do European countries deal with the
problem of architectural barriers?
4. What is the nature of consumer involve-
ment, particularly in the delivery of
independent living services?
5. What eligibility criteria are in use?
6. How are expected outcomes determined?
5
Respondent No.
Areas of Information Need
11
3/26/80
1. Extent of consumer involvement and
control in the following aspects of
independent living:
(a) Policy making
(b) Direct service provision and
service delivery, e.g. peer
counseling, advocacy in
affirmative action, etc.
(c) Evaluation of services and
programs**
2. Shortage of disabled people with
business and management skills, and
hence the need to train them in these
areas.
3. The extent to which a program is
oriented toward maintenance, e.g.
maintaining the person in a status
quo, or rehabilitation, e.g. improving
the person's status or handling of
his/her life situation.
**Is of the opinion that the very restricted criteria for evaluation in the U.S. has
to do with the independent living programs' close affiliation with vocational
rehabilitation. Related to this has been the practice to simply rename VR counsel-
ors independent living counselors.