OAARSN Book Review

Caregivers and personal assistants:
how to find, hire and manage the people who help you 
(or your loved one!).
By Alfred H. DeGraff, Author-Publisher. 
Saratoga Access Publications, Inc. 2002. ISBN: 0-9621106-1-2. 507 pages. 
Price US$ 24.95 (CAN$ 37.95) in most bookstores, online, or by calling 1-800-266-5564.
Saratoga Access Publications, PO Box 1427, Fort Collins, CO 80522-1427.


Several million Canadians depend on daily help from family caregivers or paid personal assistants or both. Help recipients include patients being discharged early from hospital, people with lifelong disabilities, and seniors undergoing the increasing limitations of aging. In the United States, the National Family Caregivers Association estimates that 26 per cent of adult Americans provided caregiver services to loved ones within the last 12 months. A similar proportion here would mean that at least 5 million family caregivers in Canada. 

Caregivers and Personal Assistants is billed as “a bible for people who must depend on others to get through the day.” We highly recommend the book to all people with disabilities (and their agents) who need others to help with their daily personal needs and to family caregivers who need to hire paid help because they are becoming chronically tired and heading for depression. Its advice is vital for people with useful also for health care facilities and agencies that always need more hired help. Its lessons are also vital for supporting people with developmental disabilities though their needs are not explicitly discussed.

Alfred H. “Skip” DeGraff is uniquely qualified to provide this advice. For over 30 years a tetraplegic (since a diving injury at 18), he uses motorized wheelchair mobility and has been dependent each day on help providers. While completing graduate school and pursuing professional careers, he has personally employed over 350 personal assistants (PAs) after interviewing over 1,500 applicants. 

The author learned about recruiting, hiring and managing help providers in various settings, including:

  • his mother’s home (using family caregivers); 
  • a local community college (using fellow students); 
  • three residential university campuses (by hiring dormitory room-mates as live-in student aides);
  • large urban apartment complexes while pursuing careers (by recruiting live-in roommates to provide help in exchange for their room and utilities);
  • extensive business and vacation travel by car and air (by using help from aides, friend and caregiver-relatives in exchange for their transportation, room and board);
  • inpatient hospital stays (instructing and managing physicians and nursing staff for routine disability-related needs and accepting their instruction and care for the new, temporary acute needs);
  • his private home, while married, by balancing help from his caregiver-wife and for salaried outsiders;
  • his private home, before and after marriage, by combining live-in and salaried help


DeGraff has shared his management strategies widely through seminars, courses, and publications. He has provided one-on-one counseling to help recipients, family caregivers, and paid providers. He has also taught formal 16-week courses on PA management and hosted magazine columns. This experience is reflected in the book’s crisp style and clear presentation. There are many memorable examples and strategies. Who could forget RISHTMP—the cyclical process you go through with each new aide or group of aides (recruiting, interviewing, screening, hiring, training, managing, and parting ways)?

The scope, style and layout of Caregivers and Personal Assistants are finely honed, as this is third and completely revised edition of a book on this topic first published in 1978. In addition, DeGraff invites readers to subscribe to a free e-newsletter at saratoga-publications.com

Amid all the detailed step-by-step strategies, the reader receives powerful messages about the importance of each help recipient’s “right to maintain control over your own lifestyle and daily schedule—your quality of life. You enjoy and hold sacred the freedom of doing what you wish, when you wish. You recognize that your disability has imposed some limitations on this freedom; however, you strive each day to enjoy life to its fullest-to seize the day (carpe diem).” (p.19). A valuable (though brief) concluding section discusses the need to balance and co-ordinate the rights of help recipients, help providers and family caregivers, so that relationships can be harmonious and reciprocal.

Oultline of Chapters:

Introduction
       Why This Reference is Important to You: Your Freedom and Control
       Definitions of Titles and Terms Used in This Reference
       Two Types of Assistance Providers:
       -Unpaid caregivers, daycare and respite providers, and volunteers
       -Paid aides and personal assistants (PAs)
       How to Use This Reference
       Your Quick Start Guide: Five Topics to Get You Going Today!
Part I Identifying Your Options for Assistance
       Beyond Family Caregivers: Options and Settings for Finding Outside Assistance
       Volunteer Help: Don’t Wear Out Your Friendships
       Live-In Aides, and Your Other Residence Options
       Settings Where You Use Help
Part II Three Ten-Step Plans for Getting the Help You Need
       Ten Steps to Getting All or Some of Your Help from Family Caregivers
       Ten Steps to Getting All or Some of Your Help from Agency-Employed Aides
       Ten Steps to Getting All or Some of Your Help from Personally Employed Aides
Part III More Topics on Getting the Help You Need
       Where and How to Advertise for Your Own PAs
       Initial Training and Ongoing Management of Aides and PAs
       Recognizing and Resolving Your PA Problems, or Parting Ways
Part IV Taking Control of Your Help Needs
       When It Is, and Is Not, Okay to Ask for Help
       Getting It Done—Your Way
       Defining and Describing Your Help Needs
       Say It, Ask for It, and Act—Assertively!
Part V Strategies for Your Being A Good Manager
       Your Qualities and Strategies as a Good PA Manager
       Dividing Your Needs, and Assigning Work Shifts, Among Several PAs
       Setting Up Your Efficient Work Areas, and Maintaining Adequate Supplies
       Your Personal Coping with, and Reacting to, PA Failures
Part VI The Costs of Your Paid Help
       Your Costs of Recruiting, Training, and Keeping PAs Happy
       Paying Your Salaries: Cash, Non-cash, or Both
       U.S. Tax Obligations, Deductions, and Publications for PA Employers
Part VII “I Understand How You Feel”
     —Concerns Heard from You, as a Recipient, Family Caregiver, or Paid Provider
       A Bill of Rights for You, as a Help Recipient, Caregiver, or Paid Provider
       Your Personal Concerns, as a Help Recipient
       Your Personal Concerns, as a Family Caregiver
       Your Personal Concerns, as a Paid Help Provider,
       plus Ten Reasons Why PAs Quit Their Jobs, and Ten Reasons Why PAs Are Fired
Part VIII Parting Advice for You
       When You or Your Help Provider Has—or Might Have—AIDS
       Medical Monitoring Services—Your Push-Button Lifesaver
       Your Discretion, Privacy, and Confidentiality
       Your Educational Role and Objective:
       To Direct Some;
       To Teach, Instruct, and Train Most; and
       To Educate a Select Few
Appendices (mainly specific to the US) 
Index
 

For more information about this book:
Saratoga Access Publications, PO Box 1427, Fort Collins, CO 80522-1427.
Phone 970.484.5595 Fax 970.484.5531; E-mail: mailbox@saratoga-publications.com
Web site: saratoga-publications.com

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