Independent Living Institute


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.


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:

Public education

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.

World Institute on Disability,
510 16th St, Oakland, CA 94612, United States.

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