Paid family caregiving can be the best of care and, unfortunately, the worst of care. In their article, Simon-Rusinowitz, Mahoney, and Benjamin will detail how paying family for the care of elderly family members can be the best of care and benefits the client, the family, and society. This article will detail how paying family can produce the worst of care, and why taxpayers should not support such payments.
This position is based on experience derived from managing the Community Care Program in Illinois, which provides home- and community-based care to over 35,000 older people a month. Eligibility is based on a need for care, as measured by a standardized instrument termed the Determination of Need. The instrument assesses functioning with fifteen activities of daily living and instrumental activities of daily living, and for each activity with which the older person has difficulty, the availability of family and informal supports is addressed. Need for care is determined by a look at those activities with which the applicant has difficulty and lacks necessary assistance. In this way, the program is designed to complement and supplement family support, but not replace it.
In the first years of the program, as a result of a policy decision by another state agency, a significant portion of the caseload was served by family members who were paid as personal care attendants. When the program was transferred to the Illinois Department on Aging, detected abuses led the department to close that subprogram, allowing no more clients to have personal care attendants, and to allow payments only to contracted agencies. Since that time, however, a number of agency providers have elected to hire family members as "preferred" workers, assigning them to care for an elderly family member. As a result, the department has a considerable history to draw upon regarding the problems that can occur when a family member is a paid caregiver.
Advocates may argue that a policy of paying the family caregiver supports and strengthens basic family values. On the other hand, it can be argued that such a policy exploits family values by paying the family member less than the going "market" rate for provided services.
Under the banner of "consumer-directed care,' states can reduce the costs of home- and community-based care by providing vouchers or direct payments to clients who, in turn, hire their own workers, termed personal care attendants. By avoiding the administrative costs of recruiting, hiring, training, and supervising workers, the cost per unit of service is substantially reduced. The cost is further reduced by not having to pay mandated fringe benefits such as unemployment and workman's compensation, although most states may pay Social Security taxes on behalf of the client. And, of course, no health insurance, retirement benefits, sick leave, or vacation are offered. Indeed, the states are careful not to pay for these benefits lest they be open to a charge that these workers are state employees and subject to all the benefits state workers enjoy.
It is a well-established fact that reimbursements to homecare workers are inadequate in most areas of the country. In these times of full or nearly full employment, workers can demand and receive higher wages. Because fewer are willing to accept the low salary and lack of benefits paid to personal care attendants, there is a severe shortage of homecare workers.
However, family workers, who can be considered to be a subset of the larger class of personal care attendants, can be an exception to this general finding. Family members are more likely to be trapped into accepting such employment because they are unable to recruit and hire a nonfamily worker. Faced with the prospect of placing their family member in a nursing home, these family workers will sacrifice higher wages to care for their family member at home.
One such family member detailed this problem in a public hearing on providing a "living wage" for homecare workers. …