There are at least two universal truths that apply to family caregivers. First, they are among the most caring, loving and generous people in today’s world. Second, sooner or later most realize that although their love and intentions to assist a family loved one are unlimited, their human stamina for providing that assistance has limitations.
Sooner or later, most families realize the need for outside relief or replacement help. Some wisely bring in outside help providers from day one to complement family caregiver efforts. Others prefer first to use only family help before eventually becoming physically and emotionally tired and asking for some relief.
Regardless of how and when the decision is reached, the family discussion next becomes, “Where can we find quality, trustworthy providers?”
Community volunteers can be tapped to provide several types of very dedicated, responsible help. Whether the volunteers come informally from friends or through a structured organization, many families successfully reply on unpaid relief assistance.
Other families prefer to hire providers. They usually find there are two primary sources. Aides can be personally employed or contracted from agencies.
Personally employed PAs (personal aides or assistants) are often the choice of help recipients who have long-term needs and who are able to insist on maintaining a maximum control over the quality of their lifestyle. When, instead, a family prefers agency aides, it’s usually because the recipients are unwilling or unable to employ their own PAs, or they receive funding from a source that requires using aides from an approved agency.
So, from where should your family’s auxiliary help be recruited? To begin a more detailed comparison, let’s first debunk the great myth about agency aides: “If I hire an agency aide, a professional who is experienced and trained will arrive at my door, will know exactly what needs to be done, and will simply take care of my needs while I relax, rest, and recuperate.”
Regardless of an agency aide’s abundance—or often complete absence—of experience and training, that person will arrive on the first day with the same greeting as someone personally employed, “Hello, I’m Heidi (or Sam). Please tell me what help you need, as well as how and on what schedule you want me to provide it.”
At that moment, you, or your representative, become a personnel manager. There are no short cuts. The initial training and each day’s ongoing management and supervision must come from you or your rep during your face-to-face work with each aide—they cannot come from an agency supervisor who can’t be there that often.
Each time you need a new provider, you use the RISHTMP cycle—Recruiting, Interviewing, Screening, Hiring, Training, Managing and Parting with each helper. If you use agency aides, you recruit, interview, screen, and hire the agency—and then proceed to train, manage, and part with the aides it assigns to you. If you personally employ, you perform all the tasks with each of your PAs.
Your decision about using agency aides or your own PAs will also be based on these considerations:
Cost If your providers are funded, often by health insurance or public assistance, the funding source often requires your aides to come from an agency. If the funding comes from your pocket, it’s a fact that agency aides cost at least two or three times that of personally employed
Ability and willingness to recruit, hire and manage For help recipients who lack the cognitive clarity or willingness to state their needs and then manage the help they need, agencies can be essential. Also, when a recipient’s help needs are temporary, using an agency relieves the need to learn many of the management skills. However, when one’s dependent needs are life-long, learning the skills can be simply an investment in controlling one’s quality of life.
Control Is it important for you to be in maximum control over the quality of who provides your help, as well as the what, how and when of the help you receive? Are you a hands-on, assertive person who wants to live by your own schedule and preferences, or are you comfortable accepting agency policies and schedules about who helps you and when they are available?
Training As mentioned, whether you use agency or personal providers, you or your representative will provide most of the initial training and ongoing management.
Choice of duties Due primarily to insurance liability, agencies have some strict limitations on the tasks that each type of staff can perform. In contrast, your own PAs routinely provide any assistance you request, and to which they agree.
Authority to replace undesirable aides If you use agency aides, you usually must accept whom they assign you. Your reason to request a replacement must be pretty serious, because most agencies are consistently short staffed. In contrast, if you sign your PA’s paychecks, you have unquestioned authority about who works for you.
Paying salaries, maintaining records and paying taxes When using agency aides, the agency crunches the numbers, keeps the records, and pays the salaries and taxes. However, when employing your own PAs, a local CPA can set up your bookkeeping system and then file the government employment documents on schedule.
The choice between using agency aides and personal PAs is based on your ability, willingness, funding and desire to be in maximum control of your own lifestyle. For many of us, agencies are essential. For others, we insist on controlling the quality of the help we receive by first controlling the quality of our help providers—and that means routinely employing our own
Alfred H. “Skip” DeGraff is a spinal cord injured quadriplegic who has used a motorized wheelchair while hiring and managing his own PAs for over 30 years. He is also the author of the new, 512-page book, Caregivers and Personal Assistants: How to Find, Hire and Manage the People Who Help You (Or Your Loved One!). This unique resource is reviewed in this issue of Today’s Caregiver, and copies are available from us.
© 2002 Alfred H. DeGraff
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