Research & evaluation
The World Institute on Disability
The World Institute on Disability (WID) is a private,
non-profit corporation focusing on major policy issues from the perspective
of the disabled community. It was founded in 1983 by Judy Heumann, Joan
Leon and Ed Roberts. It functions as a research center and as a resource
for information, training, public education and technical assistance.
Programs
Personal assistance services
Some of the terms used to refer to the basic support
services which many people with functional limitations require are: home
care, attendant services, in-home supportive services, homemaker chore services,
and long term care. No matter what terminology one uses, the issue is the
same: the services are simply not available in a way that is appropriate
and affordable to the majority of people who need them. As a result thousands
of people make due without the services and in doing so experience unnecessary
isolation, unemployment, deteriorating health and institutionalization.
Since its inception, WID has taken on personal assistance services as a
priority and conducts a broad and extensive program of research, policy
analysis, technical assistance and public education.
Personal assistance services research
WID has undertaken a number of research projects
including:
- A 50-state survey of publicly-funded personal assistance services
completed in 1987. A report and executive summary are available.
- An in-depth study of personal assistance services in California, Colorado,
Connecticut, Massachusetts, and Missouri - completed Spring, 1988.
- A three-year comparative study of personal assistance service delivery
systems. This study, funded by the National Institute on Rehabilitation
and Disability Research, focuses on comparisons of cost, and advantages
and disadvantages of different service delivery models.
- Collaboration on a national representative survey of the use of personal
assistance services by persons with spinal cord injuries conducted by Monroe
Berkowitz of the Bureau of Economic Research, Rutgers University, N.J.
- Continuing analysis of national data bases to determine the incidence
of functional limitations requiring personal assistance in the U.S. and
prevalence by age group.
Public education
- WID publishes a quarterly newsletter, Attendant Services Network,
which focuses on issues and problems faced by persons who need personal
assistance services. The newsletter reports on developments at the state
and federal level and discusses major policy issues.
- Presentations at Conferences - WID reports on the latest developments
in the field and our own research and public education efforts at major
conferences and symposia around the country and internationally.
Technical assistance
WID has responded to more than 500 requests for information
about personal assistance services from individuals, organizations, government
agencies and elected representatives. It also has undertaken technical assistance
contracts with a number of organizations including the National Council
on the Handicapped, the Department of Rehabilitation of the State of Illinois,
the University of Pennsylvania, the University of California, San Francisco
and others.
Access to affordable health care
WID has received a grant from the National Institute
on Disability and Rehabilitation Research to develop four policy bulletins
on health insurance and disability issues from a consumer perspective. The
bulletins will cover the following topics: (1) comparison of different approaches
to health insurance in the U.S., (2) characteristics of persons with disabilities
or chronic illness, (3) limitations of the existing systems for financing
and delivery of health care to persons with disabilities or chronic illness,
and (4) international comparisons of health care systems as they affect
persons with disabilities or chronic illness.
International affairs
Disability is a worldwide phenomenon, and in spite
of great cultural, political and economic differences there are also many
communalities in the experiences of disabled people around the globe. WID
has established itself as one of the world's foremost research, training,
policy analysis, and resource centers representing the disabled community.
One of its missions is to share the Independent Living philosophy around
the world. Current activities include:
Research grants for information exchange
WID has embarked on a 3-year federally-funded program
to advance cooperation and information exchange between U.S. and foreign
disability researchers. Through this program WID and its sub-contractor,
Rehabilitation International, issues small grant awards to U.S. experts
in the disability/rehabilitation field to study innovative policies, practices
and programs in other countries for the purpose of information dissemination
within the U.S. disability community.
Training programs in Independent Living
WID designs individual training programs to help
people with disabilities from around the world to meet the diverse needs
of their own communities. Located in the San Francisco Bay Area of California,
the cradle of the Independent Living Movement, WID offers foreign visitors
a unique opportunity to visit many innovative programs fro the disabled
including Independent Living Centers, technical aids centers, an increasingly
accessible community environment and public transportation system, and many
severely disabled persons living and working in the community. WID arranges
both local and national programs, and to date has hosted and trained visitors
from over 30 countries.
Information and referral services
WIDserves as an international resource center for
the sharing and exchange of knowledge about disability issues between people
of different countries and cultures. WID's international affairs department
responds to requests from other countries for contacts in the disability
field, bibliographies, articles, and other information in a large number
of areas.
International technical assistance and consulting
WID has an experienced staff and consultants available
for consultation with government agencies, organizations and individuals
in many countries. International conferences, workshops and training sessions
are tailored to specific needs for information about disability policy issues
and services, but draw on the fundamental tenets of the Independent Living
philosophy.
Aging and disability
Bay Area Aging and Disability Project
WID has been awarded matching grants for one year
from the Koret Foundation and the Henry J. Kaiser Family Foundation to initiate
a Bay Area Aging and Disability Project. The purpose of the program is to
bring together leaders from the Bay Area aging and disabled communities
so that they can learn from each other, share resources, build alliances
and develop projects to address common problems. For this project, WID is
collaborating with the American Society for Aging.
National Conference on Aging and Disability
WID and the Institute on Health and Aging, University
of California, San Francisco, for the first time brought together leaders
of the aging and disability fields to initiate a dialogue on the applicability
of Independent Living concepts to the aging field. The conference was held
at the Wingspread Conference Center in Racine, Wisconsin in September 1985.
A Bay Area conference on similar lines was just held at Stanford University.
Training and disability
The Independent Living Movement of people with disabilities
has played a major role in influencing public attitudes toward disability
and promoting the civil rights of people with disabilities. WID is committed
to a program of public education and training to further the work of the
lives of more disabled people.
Current WID Activities in the area of training and public education:
Speaking engagements
Representatives of WID travel extensively as the
guests of disability organizations, government and other agencies to provide
lectures, workshops and consultation to disabled and non-disabled policy-makers,
advocates, health professionals, academics, and program administrators on
issues of disability and Independent Living.
PEW Charitable Trust Public Education Project
This three-year project supports WID's work to build
bridges between the systems serving the elderly and the disabled. It enables
WID to take the information, statistical data and analysis developed in
the Attendant Services and Aging and Disability project areas and to package
this information in ways which are most suitable for the audiences which
need to be reached. It also makes it possible for WID to work closely with
policymakers in education, government and health and social services on
ways in which this information can be used to improve the services and opportunities
available to disabled people of all ages.
AC Transit Training Project
WID has a contract to conduct disability awareness
training for personnel at all levels at AC Transit, and to make recommendations
directed at improving the quality of service to the disabled community.
During the course of this project, WID conducted surveys of drivers and
users with a variety of disabilities in order to ascertain the strengths
and weaknesses of the service that AC Transit is currently providing.
Supported employment enterprises: businesses with a future
WID provides technical assistance to organizations
nationwide interested in developing economically self-sufficient small businesses
as transitional supported employment programs for people with developmental
disabilities. The Kennedy Foundation has given WID a one year start up grant
for this purpose. WID strongly supports the development of model projects
which can be used and learned throughout the country.
Empowering disabled people within their religious denominations
Eighty disabled members of the California Episcopal
Dioceses were mobilized and trained to work for integration of the disabled
into the congregation and church life. Fifteen parishes agreed to develop
projects. A film is being produced on the model project.
Publications and materials
Descriptive Analysis of the In-Home Supportive Services Program in California.
Describes one of the most innovative programs in the country. Examines the
history of the 25-year old program, how it operates, who it serves, and its
problems.
Attending to America: Personal Assistance for Independent Living.
Explores state of attendant services, contains policy recommendations, action
steps, directory of attendant service programs in the U.S. and a bibliography.
Ratzka, Adolf D., Independent Living and Attendant Care in Sweden: A Consumer
Perspective, World Rehabilitation Fund, Monograph 34, New York, 1986.
A consumer-based analysis of the attendant services system in Sweden.
Report on National Attendant Care Symposium 1985. Proceedings from a national
meeting sponsored by the National Council of the Handicapped.
Recommends changes in legislation.
Attendant Services, Paramedical Services, and Liability Issues.
Explores the issue of liability of providers of different skill levels performing
personal service tasks.
Zukas, Hale, Summary of Federal Funding Sources for Attendant Care. Overview
of the provisions for attendant services under Medicare, Social Service Block
Grant, The Rehabilitation Act, and Title III of the Older American's Act.
Zukas, Hale, The Case for a National Attendant Care Program.
An analysis of the federal funds presently utilized to finance attendant services,
their inadequacy to fill the need, and the need for a national entitlement
program.
Attendant Service Programs that Encourage Employment of Disabled People.
Brief state-by-state description of programs encouraging employment, giving
information on eligibility criteria, administrating agency, funding.
Ratings of Programs by Degree of Consumer Control.
Ratings of each programs' degree of consumer control based on the Handicapped's
ten point criteria.
Attendant Services Network Newsletter. Personal Assistance For Independent
Living. Vol. 1 May 1987. Published quarterly.
Address:
World Institute on Disability,
510 16th St, Oakland, CA 94612, United States.
Tools
for Power contents