RESEARCH TRAINING CENTER ON PERSONAL ASSISTANCE SERVICES (RRTC on PAS) WORLD INSTITUTENDISABILITY 510 - 16th Street, Suite 100 Oakland, CA 94612 Voice 510-763-4100 Fax 510-763-4109 TTY 510-208-9493 Personal Assistance Services Management ANNOTATED RESOURCE LIST OF TRAINING MATERIALS FOR CONSUMERS Karyl Eckels and Susan T. Brown FORWARD The publications included in this resource list represent the views of the disability community regarding consumer-directed personal assistance services (PAS), an integral part of Independent Living philosophy. All of the selections give basic information on how people with disabilities can manage their PAS and obtain the skills necessary to function as the employer of their personal assistants. Independent Living Centers, some with limited resources, produced many of the selections, utilizing their wealth of knowledge and experience to mentor and share with other consumers. As you review this list you will notice that we do not recommend any particular publication. Thus you can obtain a variety, mixing and matching the information in a manner that is most useful to you. A STEP-BY-STEP GUIDE To TRAINING AND MANAGING PERSONAL ATTENDANTS: VOLUMES 1 & 2. Ulicny, G. & Jones, M. (1987). Research and Training Center on Independent Living, University of Kansas, Lawrence, KS, 66045, 913-864-4095. Volume 1, $14.10, Volume 2, $9.70, videotape $31.50, complete package, $45.00 (videotape & both volumes). Volume 1, Consumer Guide details the management process of working with personal assistants. The guide includes information on the importance of consumers assessing their needs, developing checklists, and abuse precautions. Volume 2, Agency Guide, designed for use in conjunction with Volume 1, assists agencies in developing a personal assistance services management training program for consumers. CONSUMER'S GUIDE To ATTENDANT CARE. Roberts, S. & Sydow, N. (1984). Access to Independence, Inc., 11310 Mendota Street, Madison, WI, 53714-1039, 608-242-8484, $16.00. This manual is both a guide and a workbook to teach consumers the necessary skills of personal assistant management. The book emphasizes good communication and basic management skills, and includes a section on how to give feedback to personal assistants. HIRING HOME CAREGIVERS-THE FAMILY GUIDE To IN-HOME ELDERCARE. Susik, D.H., M.A. (1995). American Source Books, Impact Publishers, Inc., P. O. Box 1094 San Luis Obispo, CA, 93406, 805-543-5911, $11.95. This is a comprehensive guide to utilizing consumer- directed personal assistance service as a way for elders to maintain their independence. The author's knowledge of the aging service delivery system allows for a smooth translation of the consumer-directed personal assistance model for elder consumers, their families and aging service providers. The book thoroughly covers employing and managing personal assistants. Additionally it includes a discussion on alternatives to consumer- directed services, appendices with resource information on taxes, and aging HOME HEALTH AIDES: How To MANAGE THE PEOPLE WHO HELP You. DeGraff, A. (1988). Published by Saratoga Access Publications, P.O. Box 1427, Fort Collins, CO, 80522-1427, 800474- 4010, $18.95. This 348 pp. book is currently in revision; the new edition should be available in late 1996. Written by a user of personal assistance services, Home Health Aides is a "step-by-step reference handbook, which extensively instructs recipients of assistance how to be in control of the help which they use. ANNOTATED RESOURCE LIST OF TRAINING MATERIALS FOR CONSUMERS How TO HIRE HELPERS: A GUIDE FOR ELDERS AND THEIR FAMILIEs.Task Force on Aging, Church Council of Greater Seattle, (revised 1988). Church Council of Greater Seattle, 4759 - 15th N.E. Seattle, WA, 98105, 206-5251213, $3.00. This 12-page booklet provides basic information on determining what help is needed, setting up contracts, advertising and interviewing, financial and legal considerations, and communication tips to help keep workers. How To MANAGE YOUR PERSONAL CARE ATTENDANTS. Alpha One Center for Independent Living, Maine's Home Based Care Program, (revised 7/94). Alpha One, 127 Main Street, South Portland, ME, 04106, 800-640-7200 v/tty, $20.00. This comprehensive 36-page manual covers the basics of attendant services (such as recruiting, hiring, firing contracts, etc.) as well as the philosophy of Personal Care Attendant Services and the history of the PCA program in Maine. Parts of the manual are specific to Maine's program, but most information in the manual is easily transferable. Of special interest are sample job descriptions, applications, contracts, duty checklists, and evaluations. INDEPENDENT LIVING WITH ATTENDANT CARE. Board, M. A., Cole, J. A., Frieden, L., & Sperry, J.C. (1980). ILRU at The Institute for Rehabilitation and Research, 1333 Moursand Avenue, Houston, Texas, 77030, 713-520-0232, $3.50 each, $10.00 for the complete set.Three booklets in a series, subtitled as follows: A Guide for the Person with a Disability, A Guide for the Personal Care Attendant, and A Message to Parents of Handicapped Youth. A Guide for the Person with a Disability provides a basic introduction to attendant care models, interviewing, hiring and terminating attendants, provider/consumer relationship issues, and back-up systems. A Guide for the Personal Care Attendant discusses different kinds of disabilities, how and where to look for attendant jobs, and provider/consumer relationship issues. A Message to Parents of Handicapped Youth discusses basic independent living issues, including attendant care issues for family members of disabled children and youth. MANAGE YOUR PERSONAL ASSISTANCE. Grant MacEwan Community College, (revised 1992). Community Enrichment Project, City Center Campus, Building A, 107104 Avenue, Edmonton Alberta, T5J 4S2, 403-497-5117, the booklets (series of 3) cost is $29.95, the videos(series of 3) cost is $120.00. The booklet series, Steps to Independence, is a self-study guide for managing personal assistance and is complemented by the video series, Making Your Own Way. Module I, Identifying Attendant Care Needs, contains a checklist that examines the consumer's daily activities and a lifestyle inventory. The exercises help to assess the when, where, why, and how much personal assistance the individual needs to live independently. Module II, Hiring an Aide, includes a sample employment agreement, information on how to write job descriptions, and advertisements, as well as the basics of interviewing and screening personal assistants. Module III, Communicating With Your Aide, teaches effective communications. PERSONAL ASSISTANT HANDBOOK AND CLIENT HANDBOOK. Virginia Department of Rehabilitative Services, (no date). Contact the Department of Rehabilitative Services for the state of Virginia, 703960- 6946, free. This pamphlet is specific to the state of Virginia's Personal Assistance Service Program. The handbook describes the process of obtaining PAS through the Virginia Department of Rehabilitation and hiring an assistant. It includes a sample advertisement for personal assistants. PERSONAL CARE ASSISTANTS: How To FIND, HIRE, AND KEEP THEM. Rehabilitation Research and Training Center on Aging with Spinal Cord Injury (no date). Craig Hospital Research Department, 3425 South Clarkson St., Englewood, CO, 80123, 800-5RE-HAB8, (573-4228), free. This brief pamphlet includes topics on: organizing and consolidating needs, community resources, financial and contract issues, recruiting, and developing an effective provider/consumer relationship with your PCA. SMOOTHING OUT THE EDGES: A MANUAL ON ATTENDANT MANAGEMENT. Walker, P. (1989). Center for Independent Living, 2539 Telegraph Ave., Berkeley, CA, 94704, 510-841-4776, free. This 52-page manual discusses the basics of attendant care from an independent living perspective. It includes a number of exercises, checklists and sample forms. THE CONSUMER DIRECTED PERSONAL ASSISTANCE PROGRAM GUIDE. Concepts of Independence, Inc., (1995). 120 Wall Street, Ste. 1010, New York, NY, 10005, 212-293-9999, free. This publication is a guide to receiving personal assistance service through the Concepts of Independence program. Chapter two provides a brief overview of hiring, training, supervising, evaluating, and terminating personal assistants. This project is supported, in part, by award number 90-AM-2061, to the National Council on Aging from the Administration on Aging, Department of Health and Human Services and the Assistant Secretary for Planning and Evaluation. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy.