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USING NEW MEDIA TO TEACH PERSONAL ASSISTANTS AND PEOPLE WITH DISABILITIES

Lewis E. Kraus
InfoUse, 2560 Ninth Street, Suite 216
Berkeley, CA 94710
kraus@infouse.com

InfoUse is conducting a two-year project entitled "Personal Assistance Services Training Via Multimedia" with funding through a Small Business Innovation Grant from the National Institute on Child Health and Human Development (NICHD) in the National Institutes of Health (NIH).

The genesis of this project was based on the discovery that the need for personal assistance services is rapidly expanding due to more people with disabilities living independently and the aging of the general population. One available pool of resources, home health care assistants, historically have been trained to provide medical services but not to address the needs of people with disabilities to live and manage their affairs independently. Other assistants tend to be untrained, low paid individuals who may not have an awareness of independent living philosophy or of the employee skills needed for the job (such as being on time). People with disabilities, on the other hand, have needed to learn how to effectively manage their assistants, work with finances and liability issues, and understanding the need for on-the-job safety for assistants.

PROJECT MISSION AND GOALS

The goal of the project is to develop and provide training materials via new media technologies to allow consumer choice in the design, management, and delivery of personal assistance services.

Phase I, completed in 1998, created and tested a prototype interactive multimedia CD-ROM. During that feasibility test period, InfoUse completed the objectives of:

1. defining essential components of consumer-oriented packages for personal assistance training;
2. identifying best approach(es) to training design and interface creation;
3. developing computer logic and script;
4. creating a demonstration module;
5. soliciting consumer review and feedback;
6. developing a specific plan for development of full product in Phase II.

The specific goal of this current Phase II, begun in August 1999, will be the design, development, and testing of CD-ROM, videotape and World Wide Web products containing training for consumers and personal assistants that can be distributed through publisher and distributor networks and the World Wide Web.

During phase II, we will:

1. establish the framework for effective product development;
2. produce products effective in conveying consumer and personal assistant information;
3. evaluate the products; and
4. develop market-ready products and a network of distribution.

PRODUCT

The products will be available for distribution to consumers and personal assistants through the networks of organizations and agencies that provide training, products, and services to people with a disability and elderly consumers nationwide. Examples of these networks include service provider unions, professional service organizations, community colleges, nursing associations, attendant care registries, and national/state/local programs like the Public Authority system in California and Medicaid programs in other states.

These products will have the following features and benefits:

Features

• Single or multiple user capable
• Incorporates best current methods
• Visual representation of tasks
• User directed
• Flexibility in topics for different audiences
• Range of high and low tech products
• Provides training on topics not usually covered, but desired
• Built with accessibility features for vision, hearing, and physical limitations

Benefits

• Standardizes the training provided in an agency or to independent providers
• Easy access for remote areas
• Improves consumers management techniques
• Offers alternative, cost saving training format for agencies, independent providers, and consumers Permits self-paced learning

PROJECT RESOURCES

The project uses several different resources during the project. A team of advisors who are knowledgeable about specific content areas are referred to whenever issues pertaining to their knowledge area arise. Consultants in disability and personal assistance from the professional, personal, and systemic points of view assist the project in the design of content and the overall approach. The Marin Center for Independent Living and the San Francisco Public Authority will make the materials available to personal assistants and people with disabilities. An evaluation will review the success of personal assistant/consumer matches at the two sites before and after use of the materials.

BIBLIOGRAPHY

• Adler, R. (1996). Older adults and computers: Results of a national survey, http://www.seniornet.org/intitute/survey2.html

• Alpha One Center for Independent Living (1994). How to manage your personal care personal assistants: Maine’s home-based care program. Portland, ME: Alpha One.

• Beatty, P., Richmond, G., Tepper, S., and DeJong, G. (1998). Personal assistance for people with physical disabilities: Consumer direction and satisfaction with services. Archives of Physical Medicine and Rehabilitation, 79:6.

• Benjamin, A.E. (1998) Alternative models of personal assistance services, Draft data analysis report. UCLA. U.S. Department of Health and Human Services.

• DeGraff, A. (1988). Home health aides: How to manage the people who help you. Clifton Park, NY: Saratoga Access Publications.

• DeJong, G. (1983) Defining and implementing the independent living concept. In Independent Living for physically disabled people. (Crewe and Zola, eds.) San Francisco: Jossey-Bass Publishers. Doty, P., Casper, J., Litvak, S., and Taylor, H. (1993). Consumer-directed models of personal care: Lessons from Medicaid. Draft paper.

• Eustis and Fischer (1992). Common needs, different solutions? Younger and older homecare clients. Generations, 16: 17-23.

• Flanagan, S. (1997). Consumer-directed personal assistance services: Key operational issues for state CD-PAS programs using intermediary service organizations. Washington, DC: Medistat/SysteMetrics.

• In-Home Supportive Services Public Authority (1997). Home Care Personal assistants Handbook. San Francisco: IHSS Public Authority.

• InfoUse (1995). California Statewide Independent Living Needs Assessment, 1995. Statewide Independent Living Council and California State Department of Rehabilitation.

• Kasnitz, D. (1997). Personal assistance services at the worksite. Oakland, California: World Institute on Disability, Rehabilitation Research and Training Center on Personal Assistance Services. Kennedy, J. LaPlante, M., and Kaye, H.S. (1997). Need for assistance in the activities of daily living, Disability Studies Abstract, 18.

• Kraus, L.E., Nelson, J., Ripple, J., and Temkin, T. (1999) Training needs in personal assistance services of consumers, providers, and family members. Journal of Rehabilitation Administration, 22: 4, 217-231.

• Litvak, S., Zukas, H., and Heumann, J. (1987). Attending to America: Personal Assistance for Independent Living. Berkeley: World Institute on Disability.

• Manolescu, R., Bullock, M., et. al. (1986). Employer Rights and Responsibilities. Personal assistant Care Management Series: Module Four. Edmonton, Alberta: Grant MacEwan Community College.

• Manolescu, R., Bullock, M., et. al. (1986). Hiring an aide.. Personal assistant Care Management Series: Module Two. Edmonton, Alberta: Grant MacEwan Community College.

• Manolescu, R., Bullock, M., et. al. (1986). Identifying personal assistant care needs. Personal assistant Care Management Series: Module One. Edmonton, Alberta: Grant MacEwan Community College.

• New Jersey Personal Assistant Services Program (n.d.).Training Manual, Vol. III.

• Owen, D., et. al. (1990, 1996). Personal care personal assistant training handbook: A guide to personal care for persons with physical disabilities. San Bernardino, CA: SEIU Local 434-B

  .

• State of Pennsylvania, Department of Public Welfare (1989). Pennsylvania personal assistant care program training guidelines. Harrisburg: Department of Public Welfare.

• Ulicny, G., Adler, A., Kennedy, S., and Jones, M. (1987). A step-by-step guide to training and managing personal assistants: Consumer guide. Lawrence, KS: Research and Training Center on Independent Living.

• Walker, P. (1989). Smoothing out the edge: A manual on personal assistant management. Berkeley: Center for Independent Living.

• Washington State Department of Social and Health Services, Aging and Adult Services Administration (1996). Fundamentals of Caregiving, 2d ed.

• Washington State Department of Social and Health Services, Aging and Adult Services Administration (1997). Individual Provider Handbook.

• World Institute on Disability (1994). Proposal for a Rehabilitation Research and Training Center on Personal Assistance Services. Oakland, CA: WID.

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