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. She reported a long and fruitless search for a competent and reliable worker. After many experiences of workers not showing up, not performing the requested tasks, or even stealing from the client, she reluctantly decided to quit her higher paying job with benefits to stay with the client as a paid family worker. She was paid minimum wage and received no benefits for this sacrifice. In addition, she again faced the difficult task of finding a replacement whenever she was ill and unable to work, her car broke down, or she needed respite. She felt trapped by a system that did not value caregiving and did not provide sufficient reimbursement to attract a qualified and quality workforce.
In a society that already exploits the in-home worker, the policy of paying family to provide the care simply continues the exploitation and, in fact, may remove any incentive to change. If family members agree to provide the care at a less-than-adequate wage, and if the policy that allows them to do so can be cloaked in the "feel good" language of consumer choice, the pressure to increase wages and benefits for all in-home workers is reduced. And, with other potential workers able to obtain jobs with higher wages and benefits, the client and family are likely to have very little choice but a family caregiver.
POTENTIAL FOR FRAUD AND ABUSE
The above discussion focused on the better side of paid family caregiving, where the family member is more reliable, competent, and caring than a nonfamily worker. On the other side of the picture are instances in which the family member defrauds or abuses the client and program.
While the potential for fraud and abuse exists in any social service program, a program in which family members are paid to provide care creates an environment that is particularly ripe for fraud. The most common type of abuse is financial fraud, where the client and the family member collude to report services that were not delivered, in order to collect payments. In some instances, the benefits of the fraudulent payments are shared. Other times, the older client allows the family member to receive the payment, perhaps through a distorted sense of intergenerational transfer.
A recent example of collusion was detected when a case manager conducted an annual redetermination of eligibility for an elderly woman who had been served by the Community Care Program for five years. The assessment was conducted in the home of the granddaughter, who had been hired by a contracted service agency to care for her grandmother The client was lying on the sofa and reported she was in great pain and able to do very little for herself. The case manager, who did not speak the language of the client, used the granddaughter as an interpreter and, when the assessment was completed, the client was found to have scored 79 points, which on a scale of 0 to 100 is very impaired and represents less than 4 percent of the service population. As a consequence, the case manager authorized fifty hours of service a week, to be provided by the granddaughter.
An alert homecare supervisor, unable to contact the worker or the client at times when the worker was supposed to be serving the bedbound client, made an unannounced in-home visit and learned from a building manager that the client did not reside in the apartment but, rather, lived in a senior highrise. The supervisor alerted the case manager, who visited the senior housing site and observed the same client participating vigorously in an activity. Upon inquiry, the case manager was advised that the client had lived in the highrise for five years, and was able to function independently. In fact, the supposedly very confused bed-bound client who did not speak English had taken English classes.
In this example, the client and the granddaughter colluded to defraud the state of more than $48,000 in service payments. In other cases, however, the department has found the family caregiver defrauding the state without client involvement. Through a match of service records with state death records, the department has found cases in which the client has died but the family member continues to report services, forging the client's name to the service verification records. In another case, the client moved to another state, but the family caregiver continued to bill the state as if services were still being provided. Unfortunately, these examples are not all that uncommon.
A more troubling problem arises when the older person is coerced through intimidation into signing the service receipt. Most often, the older person is fearful of losing support and is threatened with nursing home placement and so signs for receipt of services. But, in some instances, the older person has been subjected to physical abuse or neglect or financial exploitation. Neglect is the most common type of abuse. Department staff have seen numerous examples of care provided in early morning or late evenings because the family member is holding down another full-time job, or the grandchild is the supposed worker and is using the funds in order to pay for college.
In other instances, the abuse takes the form of financial exploitation. The family member may be dependent on the pension or Social Security check of the client as well as the payment for services to the client. Case managers have reported instances in which the older person is very impaired and in need of more intensive or skilled care than can be provided by the family member, but is denied this needed care because the family member would then lose control of the clients financial resources. Staff who had talked with one such client reported that she begged for someone to get her into a nursing home and away from her daughter, who was the paid caregiver.
INCREASED ADMINISTRATIVE COSTS
With such potential for fraud and abuse, homecare providers report having to take extra measures to assure quality service from "preferred" or family workers. First, the agencies report more difficulty in assuring that the workers are trained before they start service and that they participate in required quarterly in-service training sessions. Second, the agencies have had to increase their monitoring efforts, making more calls to the home or making unannounced visits to the home when the worker is supposed to be on duty. Indeed, it is this sort of monitoring that brings to light many of the cases of fraud, as was seen in the case described earlier.
There are limits, however, to how successful such training and monitoring measures can be. In cases in which the family worker fails to attend the required training session or is not providing the care as directed, the agency will often follow its personnel policies for employee discipline and may terminate the worker. When this happens, the worker will simply go to another homecare agency and secure employment. The client will then request to transfer to the second agency and request services from the family member. This "employer hopping" can continue until the worker finds an agency that is willing to hire family members as workers and that is less than diligent in monitoring the delivery of services.
Advocates of consumer choice will argue that such behavior is an example ofthe client exercising the right to choose a family member as worker rather than a stranger. A less sanguine interpretation is that the family member is exploiting the client and the service system. Otherwise, why is the family worker not content to make the same salary serving a different client, while an unrelated worker serves the family member?
Thus, agencies not only incur increased administrative costs in monitoring workers but may lose clients as a result of either refusing to assign workers to care for family members or detecting and acting upon fraud. And, the agencies that do not diligently monitor the delivery of services may be subject to loss of contracts or even payments for damages as a result of poor or nonexistent care.
INCREASED PROGRAM COSTS
In addition to the potential for fraud and abuse of the system and the client, there is the potential program cost of a policy to pay family caregivers. The financial impact of such a policy could be significant. If we are to believe the literature, about 80 percent of the care provided to older people is informal and is provided most often by family members. A systematic program to pay these family and informal caregivers, then, could increase program costs as much as five times, with no increase in actual care provided. In Illinois, where the Community Care Program spends about $100 million a year for homemaker services, program costs could escalate to $500 million to pay for the family care currently being provided.
The above estimates assume the present level of care for the present number of clients and do not account for any likely increase as families who are currently providing total support to an elderly family member learn of the policy and apply for payments. If the standard formula of three equally impaired persons in the community for every one in the nursing home applies, we can estimate that, in Illinois, there are as many as 150,000 older people who would qualify for home- and community-based services (there are about 50,000 older people supported by Medicaid payments residing in nursing homes in Illinois). The above estimated $500 million, which would support about 35,000 people, could escalate to over $2 billion dollars for services.
In states where the home- and communitybased services are entitlements, which is the case in Illinois, a new entitlement, for families with older family members in the area, would be created if a formal policy of paying family workers were to be instituted. It is not too difficult to imagine not only a significant number of families applying for the benefit once they learn of it but also family intrigues about who gets to "claim" Granny.
On the other hand, the more usual case is that the state caps the amount of funds available for home- and community-based services. In such states, the limited resources could no longer be targeted only to those who had needs beyond those that the family could meet or who had no family nearby to provide assistance. Instead, the $100 million in the above example, which currently serves 35,000 people, could be reduced to serving fewer than 2,000 people. It is likely that there would be a public outcry when it was learned that as many as 33,000 very needy individuals were going without care, while the families of 2,000 older people were receiving payments for care that had formerly been provided at no charge to the state.
AN ALTERNATIVE APPROACH
The issue of family responsibility has plagued policy makers for decades. Several years ago, as a response to an advocacy effort to establish payments for family caregivers, the Illinois Department on Aging commissioned an opinion survey of the provider network. The results were interesting, with an almost equal number of respondents agreeing with each of the following statements: "strongly support," "somewhat support;' "somewhat oppose;" and "strongly oppose" paying families to care for their older members. With such a clear lack of consensus, the department sought the middle ground.
Current department policy does not allow direct payment to family members for care but offers services to complement and support the family members in their efforts. Eligibility for services is based upon both impairment and informal support, so that individuals with moderate impairment but no informal supports are eligible, as are those with strong family support but high impairment. In this way, the program acknowledges the need for support and respite for the family. And, if the family is absent or not able or willing to provide assistance, the state will provide for the needed services. With these policies, the family is supported but the negative consequences of direct payments to the family are avoided.
Further, the department recognizes that some provider agencies may elect to assign workers to provide care by family members. For those with these sorts of personnel policies, the department requires that the agencies develop and implement specific policies identifying the conditions and limitations on the assignment of family caregivers and engage in more intensive monitoring than is generally required in the program rules. Usually, the agencies' policies allow family caregivers in situations in which an appropriate worker cannot be secured, as when the client has special medical, cultural, or language needs. In addition, the policies often preclude hiring family caregivers who live with the client or who have full-time employment elsewhere.
In an effort to assure culturally appropriate services to older people with limited Englishspeaking ability, the department has developed the Service PLESE (Program for the Limited English Speaking Elderly) program, which funds twenty small service providers with roots deep in the various ethnic communities. These agencies recruit and train in-home workers from the ethnic communities to serve the elderly members of the community. This project assures that the more than 1,600 non-English-speaking clients in the Community Care Program are served in culturally appropriate ways by workers who speak the same language, removing the need to recruit and pay family workers to achieve these goals.
In summary, then, the Community Care Program is an example of how home- and community-based services can be provided for older people in ways that prevent or delay inappropriate nursing home placement-without the many pitfalls and problems associated with payment to family caregivers. Such options, which build on the strengths of both the formal and informal systems of care, should be pursued.
C. Jean Blaser Ph. D., is manager, Division of Long Term Care, Illinois Department on Aging, Spingfield, Ill.…