The following books, videos and tapes are part of the PAS Toolkit and are available from the Vermont Center for Independent Living, 11 East State Street, Montpelier VT 05602; 1-800-639-1522 or 802-229-0501; www.vcil.org.
- A Step-by-Step Guide to Training and Managing Personal Attendants: Volume 1: A Consumer Guide. Ulicney, G.R., Adler, A.B., Kennedy, S.E., Jones, M.L. (1987). Lawrence, KS: The Research and Training Center on Independent Living. This manual is designed with a specific style of management in mind, the use of checklists. It is geared to those who require extensive care but its detail is very useful to all who need to instruct someone about their specific tasks and when to do them. The checklist offers a visual reference that is helpful to all but particularly if you (or your attendant) is a “visual learner.” If you are new to using a PA this manual can help guide your thoughts about what exactly you need. The generic checklists at the back are especially helpful for training a new PA. It is what it says, namely, a “step by step guide”.
- Avoiding Attendants From Hell: A Practical Guide to Finding, Hiring, and Keeping Personal Care Attendants. Price, J. (2002). 2nd ed. This manual is meant as a guide for the live-in PA situation but is useful to all who manage their own care. Written with humor and sensitivity, the author acknowledges the difficulties in managing one’s own care and reminds us that it is not for everyone and then goes on to inspire us to do it. Offers guidelines and suggestions for advertising, interviewing, hiring, training and communicating with attendants. Addresses issues such as lending food and money and about trips to the ER. Also provides sample flyers, ads, applications and contracts.
- Consumer Direction in Personal Assistance: How to Work Together. Program Development Associates. (2002). Video. Berkeley, CA: InfoUse. Introduction by Judy Heumann, wheelchair user, well-known longtime advocate for Independent Living and the former Assistant Secretary of Education. This series of four videos and learning guides is intended for people working for agencies as personal assistants or who are training to become personal assistants. The emphasis is on understanding that even though they might be “technically” employees of an agency, when they are in your service they are under your management and direction. You could give these resources to your attendants as part of their training but is also useful for your own general knowledge. The four units help prepare personal assistants to do their job….” These four units are: 1) Consumer Direction, What is it? 2) Health and Safety, 3) Communication, and 4) Rights and Responsibilities.
- Getting From Here to There: A Manual on Personal Assistance. Ludlum, C.D. (1996). University of Connecticut: The A.J. Pappanikou Center on Special Education and Rehabilitation. (860) 486-5055. This concise manual answers questions on how and where to advertise, what questions to ask prospective employees, types of taxes to pay as an employer, and how to check references. It also includes useful forms for photocopying throughout the book. Written by someone who was reluctant to have attendant care because of concerns about how to find employees, how to pay them and all of the other challenges. The manual does a pretty good job of outlining the most important general issues and is a good starter guide for those who might be overwhelmed by the more in-depth manuals or who already have a really clear idea of how they will instruct and manage their employees.
- Help at Home: A Guide to Finding and Keeping Your Caregiver. Hammer-Williamson, K., & Henson, K. (eds). (1997). Burlington, VT: Project Home. Primarily directed toward home sharing but helpful for all PA users. This Vermont-specific guide focuses on the self-directed, non-medical approach to independent living and personal attendant care. It is an excellent resource and outlines everything from advertising, interviewing and screening, to scheduling and training. It also addresses sticky subjects like communication, conflict and abuse.
- Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury. Burdsall, D. Spinal Cord Injury Project at Santa Clara Valley Medical Center: National Institute on Disability and Rehabilitation Research; U.S. Department of Education. This is a very short manual and geared toward individuals with spinal cord injuries, but also generally useful. This resource briefly describes Personal Assistance Services, how to find, screen and interview a prospective Personal Care Assistant, and discusses your relationship with your PCA. Very brief but has good suggestions and some good usable sample forms.
- Personal Assistance Services Guide: A Guide for Hiring, Management and Conflict Resolution. Interagency Outreach Training Initiative and the Utah Assistive Technology Program, Utah State University. (1998). Available in alternative formats: call 435-797-3811. “This guide was developed to… find, fund, train and manage personal assistance services… [it takes] you through… defining your needs, advertising, interviewing, negotiating, setting up contracts, paying taxes, training, firing, locating potential funding sources, and accessing assistive technology.” This manual places great emphasis on appropriate communication in managing your care. It is the only one we have seen that also addresses assistive technology and potential funding sources. It includes portrayals of real people, checklists and forms for copying.
- Caregivers and Personal Assistants: How to Find Hire and Manage the People who Help You (or Your Loved One). Degraff, A.H., Saratoga Access Publications, Fort Collins, CO. (2002) Good for managing several attendants and a very active lifestyle. An incredibly comprehensive reference book covering every aspect of attendant care. However, it is very dense and the amount of material can be overwhelming. Small type, chapters overlap with information in several areas, so not user friendly from several viewpoints. As a reference manual, though, it is so thorough we are reluctant not to include it in this Toolkit. The author brings his personal experience of over 30 years and his passion to share this information, which is so vital to the independence of people with significant disabilities.
- Personal Assistance Services Users Manual. DisABILITY Resource Center. Everett, WA. This comprehensive manual discusses many very specific details about finding and hiring an attendant. For example, it covers developing a job description, interviewing candidates, creating a work schedule, checking references and training your newly hired attendant. It also discusses issues around communicating with your attendant, such as dealing with conflict, confidentiality and creating boundaries. This manual has excellent templates and samples of application forms, job descriptions, work schedules and interview questions. It also gives excellent information on the Independent Living Philosophy.
- Going Home. National Council of Independent Living. Audiotape. Sponsored by Michigan Centers for Independent Living. Brief but informative discussion of what one faces as one thinks about leaving a nursing home or rehab center in order to live in one’s own home. Also gives a helpful, very detailed checklist describing issues and tasks that need to be done to accomplish this seemingly daunting task. The checklist is appropriate for anyone with significant disabilities attempting to change or even review living circumstances in order to be more independent.