Independent Living Institute


Personal assistance


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DeJong, Gerben & Wenker, Ted, "Attendant Care", in Crewe, Nancy M. & Zola, Irving Kenneth, Independent Living for Physically Disabled People, Jossey-Bass Publishers, San Francisco, 1983.

Degener, Theresia, Independent Living and Personal Assistance Programs for Disabled Persons: A Comparison of Social Welfare Legislation between the United States, Sweden, and West Germany, LL.M: Thesis, University of California, Berkeley, School of Law, 1989.

Address: Theresia Degener, Münsterer Str. 1, 6000 Frankfurt, Federal Republic of Germany.

The PAST Chronicles is published 10 times a year by Personal Assistance Services Today. The Chronicles is a newsletter devoted to personal assistance issues in Virginia, USA.

Address: PAST, 8403 Thames St, Springfield, VA 22151, USA.

S. Roberts & N. Sydow, Consumer Guide to Attendant Care, Access To Independence, Inc., 1981.

Suffolk, Valerie, Challenge of Demanding Personal Autonomy, University of Manchester, 1986.

Ratzka, Adolf D., Independent Living and attendant care in Sweden: A consumer perspective, World Rehabilitation Fund, New York, Monograph No. 34

The following resources are published by the World Institute on Disability, Oakland.

The Personal Assistance for Independent Living Act of 1989: A Draft Bill prepared by the World Institute on Disability, February 1989

"In order to develop model legislation in the area of personal assistance services we asked ourselves what an adequate, equitable Independent Living oriented system could look like. First, it would be available throughout the country. It would serve people of all ages and disabilities. It would be flexible and provide for varying degrees of user self-reliance. People who are totally capable of managing their own assistance and wish to do so would be accommodated. Those who need training to be able to manage their own assistance would receive training. Those unable to learn all the management tasks or unwilling to take them on would be able to receive assistance management services such as recruiting assistance, training assistance, case management or self-advocacy assistance. Those individuals requiring more professional assistance because of mental or intellectual disabilities would also be served. An adequate system would promote independence in the way it was designed. It would be affordable to disabled people and their families through a sliding fee scale for those earning above an income level from which disability related expenses are deducted. The program would offer quality service delivery and would respect the rights of people with disabilities. Finally, it would guarantee providers decent wages and benefits."

Attendant Services Network Newsletter, published quarterly.

Attending to America: Personal Assistance for Independent Living, WID

This publication reports on results of its recent national survey of publicly-funded attendant services programs. Findings show that even though there is no state in the U.S. recognizes attendant services as a major need. While $1.6 billion was spent on publicly-funded attendant service programs in 1984-85, research indicates the money could have been more effectively spent, resulting in higher quality services for a greater number of people. Services funded with Medicaid dollars had a strong orientation to the medical model, a factor that increases costs. Currently, more than 3.8 million disabled and elderly people in the U.S. require assistance in performing the personal, mobility and household tasks necessary for Independent Living in society. However, only 25% of them receive any help from government-funded programs. The rest rely on the volunteer assistance of family and friends, paying for the service out-of-pocket when they can afford to, or live in institutions. While most states now provide some publicly-funded personal assistance, these programs are typically inadequate. Most of them foster user dependency rather than independence, are poorly distributed geographically, and offer widely varying service packages. A major inadequacy of existing programs is their restrictive eligibility requirements: 59% of the programs do not serve certain ages, 44% exclude certain disabling conditions, 50% do not serve people with income above the poverty level, and 42% do not provide the full range of services required by users. Only Massachusetts and Minnesota serve as much as 50% of their populations in need, while six states (Arizona, Mississippi, North Carolina, North Dakota, Utah and Vermont) leave more than 95% of their people in need unserved. Nationally, the largest population of people needing but not receiving services is the elderly, an estimated 1.2 million.

Reporting on this national situation, the 170-page "Attending to America" and its 30-page "Executive Summary" discuss the history and current status of personal assistance in the U.S. and examine program goals, structure, funding and encouragement of users´ self-direction--a principal concern in the Independent Living Movement. The Report also discusses a major concern of the disabled community--that most publicly funded programs discourage user self-direction. Only 6% of the programs allow users to be part of the decision-making process regarding which services are needed and how they are provided. 50% of the programs do not allow disabled people to hire their own providers, and only 10% are supportive of users´ desire to be retained during employment.

WID has received a three-year grant from the National Institute on Disability and Rehabilitation Research (NIDRR) to research the cost and effectiveness of attendant services. Subcontractor Monroe Berkowitz of Rutgers University´s Bureau of Economic Research will join WID to analyze needs for and benefits, costs, and scope of attendant services as related to different delivery models and disability groups.

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

The following resources are published by the Independent Living Ressearch Utilization Program, Houston:

Board, Mary Ann, Jean A. Cole, Lex Frieden, and Jane C. Sperry. Independent Living with Attendant Care. 3 Vols. Houston: The Institute for Rehabilitation and Research, 1980.

A set of three booklets providing common sense approaches to personal assistance is now available from the ILRU. Unlike many manuals on personal assistance which describe tasks to be performed, Independent Living with Attendant Care focuses on how disabled persons and personal assistants can develop effective working relationships. Each booklets has its focus: the individual with a physical disability, the personal assistant, and the parents of disabled children. Among the topics discussed are locating a personal assistant, wording an advertisement, interviewing applicants, establishing satisfactory working arrangements, terminating an attendant, and developing back-up plans. For the assistant the themes are looking for employment, wording a "position-wanted" advertisement, clarifying key issues during and interview, and working out a satisfactory relationship. Also, overviews of the concepts of disability and Independent Living are given. The booklet directed to parents discusses recognizing implications the Independent Living Movement may have for disabled children, teaching children who have disabilities to be responsible, utilizing support systems, and identifying when to use personal assistants. Independent Living with Attendant Care is also intended to be useful to persons working in Independent Living centers, state agencies, and other rehabilitation facilities who wish to counsel severely disabled persons and their families about living independently with personal assistance.

Independent Living with Attendant Care: Personal Assistance for People with Disabilities: An Annotated Bibliography by Margaret Nosek, Ph.D., Carol Potter, M.S., Huong Quan, Ph.D., Yilin Zhu, M.S., ILRU, 1988.

Presents information about books, articles, and audiovisual materials covering a wide range of topics related to personal assistance. With descriptive summaries of over 150 entries, this reference guide will assist consumers, Independent Living specialists, and rehabilitation counselors in locating information about specific personal assistance options. Researchers, policymakers, advocates, and service providers will find the bibliography useful for reviewing the broad spectrum of personal assistance service systems and planning for the refinement and expansion of personal assistance services nationwide.

"Personal Assistance: Attendant Services", by Margaret A. Nosek, Ph.D., in Toward Independence: An Assessment of Federal Laws & Programs Affecting Persons with Disabilities - with Legislative Recommendations: Appendix. National Council on the Handicapped, ILRU, 1986.

A chapter from the Council's report to Congress presenting definitions and information on need and costs, funding sources, and issues surrounding delivery of attendant services program based on input from leaders in the field at a national conference sponsored by the Council, as well as the Council's recommendations to Congress.

Toward a National Policy on Attendant Care: The Dutch Backdrop. Conference report prepared by Margaret A. Nosek, Ph.D. for the World Rehabilitation Fund, 1985.

Contained in this conference report are summaries of presentations on personal assistance from an international perspective given by Gerben DeJong, Gini Laurie, and Adolf Ratzka. The summary of discussions among participants covers the assistance continuum, need and demand, eligibility, delivery of services, funding, and strategies for establishing a national attendant services system.

Bustin' Loose to Independence: Through Personal Attendant Services by Margaret A. Nosek, Ph.D., ILRU, 1988.

This four hour audiotape series and training package contains information on how persons with spinal cord injury and others with severe disabilities can gain independence by using attendant services. Self-assessment check lists, resource lists, and a course outline make up the accompanying written supplement. The audiotapes and written supplement are combined in a convenient ring binder/tape storage package. And additional audiotape and guide sheet for parents and service providers orients them to concepts, techniques, and issues related to living independently with attendant services.

Address: ILRU at Texas Institute for Rehabilitation, 2323 S. Shepherd, Suite 1000, Houston, TX 77019, United States.

The following resources are published by the Research and Training Center on Independent Living, University of Kansas:

Ulicny, G R, Adler, A B, Kennedy, S E, & Jones, M L (1988). A step-by-step guide to training and managing personal attendants. Lawrence: RTC/IL, University of Kansas.

Materials describe a consumer-directed model for training and managing personal attendants. The package consists of two manuals-one for consumers and one for ILC staff, and a training videotape.

Staff & Guest Authors (1984). "Disabled employers can increase their attendant management skills." Independent Living Forum, 2 (3).

Focuses on personal assistance and management skills and includes generic checklists, interview with consumer who used personal assistance model, legislative updates, book reviews, and article on aftereffects of head injury.

Ulicny, G, Adler, A B, & Jones, M L (1988). "Consumer-directed attendant management." American Rehabilitation, 14 (3).

Presents results of studies evaluating the effectiveness of the consumer-directed attendant training and management procedures.

Ulicny, G, & Jones, M L (1985). "Enhancing attendant management skills of persons with disabilities." American Rehabilitation, 11 (2).

Presents a model using performance checklists to enable disabled persons to train and manage their attendants more effectively.

Ulicny, G R, & Jones, M L (1987). "Consumer management of attendant services." NARIC Rehabilitation Research Review. Washington, DC: National Rehabilitation Center. Also available from NARIC, 4407 8th St., Washington, DD, 20017.

Analyzes review of attendant services focusing on research related to consumer-directed models. Results support consumer-directed model but suggest importance of long-term, large-scale demonstration projects.

Ulicny, G R, White, G W, Bradford, B, & Roste, C (in press). "Consumer exploitation by attendants: How often does it happen, what can be done about it?" Rehabilitation Counseling Bulletin.

Paper presents results of a survey designed to evaluate the magnitude of exploitation of consumers by personal attendants and to examine what consumers can do to decrease the likelihood of exploitation.

Address: RTC/IL, 4089 Dole Bldg./LSI,University of Kansas, Lawrence, KS 66045, United States.

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