Stacy Dale, Randall Brown, Barbara Phillips and Barbara Carlson
Mathematica Policy Research, Inc.
This report was prepared under contract #HHS-100-95-0046 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the University of Maryland. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is: Pamela.Doty@hhs.gov.
The well-being of paid workers is an important consideration often overlooked in consumer-directed programs. Medicaid supportive services for people with disabilities have traditionally been provided through home care agencies. In contrast, under the Cash and Counseling model of consumer-directed care, beneficiaries hire and pay workers directly, deciding who provides their care, when they receive it, and how it is delivered. Because directly hired workers do not have an agency affiliation, some policymakers are concerned that these workers may not have enough training, supervision, and support and may not receive adequate wages. In addition, the emotional and physical well-being of directly hired workers may be at risk because of the workers' lack of training and support. They may also find their jobs emotionally draining because they are usually friends or relatives of their clients.
This study describes the experiences of workers hired under consumer direction in the Cash and Counseling Demonstration, using results from all three participating states--Arkansas, Florida, and New Jersey. Demonstration enrollment, which occurred between December 1998 and July 2002, was open to interested adult beneficiaries eligible for personal care services under their state Medicaid plan (in Arkansas and New Jersey) and to interested adults and children receiving home and community-based services under a waiver (in Florida). After a baseline survey, enrollees were randomly assigned to direct their own personal assistance as Cash and Counseling consumers (the treatment group) or to receive services as usual from agencies (the control group). Cash and Counseling consumers had the opportunity to manage a monthly allowance, which they could use to hire their choice of caregivers or to buy other services or goods needed for daily living. Each state's program differed somewhat from the others in how it was implemented, the size of the allowance, and how the allowance could be used. All three states, however, kept the basic Cash and Counseling principle of providing an allowance with limited constraints and helping the consumer develop a spending plan to manage the funds.
Consumers' primary paid workers were contacted by telephone about one month after being identified by the consumers in their nine-month postenrollment interview. Within about a month after being identified, the primary paid workers were called and asked to complete the Cash and Counseling Caregiver Survey. These workers, who were also the consumer's primary informal caregiver at baseline (about 40 percent of the workers for the treatment group), were also asked questions related to their role as informal caregivers. From their survey responses we constructed measures describing: (1) the worker's characteristics and relationship with the consumer, (2) the type, timing and amount of paid and unpaid care provided during the past two weeks, along with perceptions of working conditions, (3) whether the worker received training, and (4) worker well-being, including wages, fringe benefits, stress, and satisfaction. We focused on describing the experiences of the directly hired workers for the treatment group, using agency workers' experiences as a benchmark.
In our examination of workers hired by adults, the majority of directly hired workers were related to the consumer (ranging from 58 percent in Florida to 78 percent in Arkansas), and about 80 percent provided unpaid care to the consumer before the demonstration began. As a result, these workers often fulfilled the roles of both informal caregiver and employee. They provided many hours of unpaid care (an average of 26 hours per week in each state) and care during nonbusiness hours. Because they were not bound by agency rules or other state regulations, they could help with a variety of health care tasks.
There were two areas in which directly hired workers fared worse than agency workers: (1) emotional strain and (2) the level of respect they received from the consumer's family and friends. However, these differences were due to their being related to the care recipient, not to being directly hired by the consumer, as the levels of well-being of nonrelated directly hired workers were nearly identical to those of agency workers. For example, 47 percent of directly hired workers who were related to the consumer reported suffering little or no emotional strain, compared to 57 percent of agency workers, and 57 percent of nonrelated directly hired workers. Similarly, 35 percent of directly hired workers who were related to the consumer desired more respect from the consumer's family and friends, compared to 19 percent of agency workers and 19 percent of nonrelated directly hired workers. Thus, the greater strain for related workers appears to be caused not by their hired status, but by other aspects of their relationship to the consumer. The high proportion of directly hired workers (about 90 percent) who report getting along very well with the consumer is further evidence that being hired has not caused or exacerbated emotional or relationship problems for workers.
In general, the Cash and Counseling model does not appear to create adverse consequences for caregivers through either a lack of training or poor compensation. Compared to agency workers, directly hired workers were paid, on average, $1 per hour more (about 15 percent) in Florida and New Jersey and 30 cents less per hour (about 5 percent) in Arkansas. In all three states, more than 40 percent of directly hired workers were very satisfied with their wages and fringe benefits, compared to only about 20 percent of agency workers. While only about half of directly hired workers received training in the health care or personal care they provided, nearly all felt fully prepared to do their jobs and were well-informed about the consumer's condition. Injury rates for both agency workers and directly hired workers were very low (averaging less than 5 percent across all three states). Compared to agency workers, injury rates were higher for directly hired workers in Arkansas, and lower for this group of workers in New Jersey. When differences in total hours of care provided were taken into account, caregivers hired by Cash and Counseling consumers were no more likely than agency workers to suffer injuries from caregiving.
Finally, both agency workers and directly hired workers were quite satisfied with their overall working conditions and the supervision they received. Our findings were remarkably consistent among workers in all three states, even though the states served different target populations and had different restrictions concerning who consumers could hire. Moreover, results for the workers hired on behalf of children in Florida were similar to the results for those hired by adults in Florida.
Despite the satisfaction that workers hired under Cash and Counseling had with their work arrangements, compensation, and relationship with the care recipient, there remain some concerns about workers' well-being and willingness to continue in their role over a longer period. There are several improvements that the program could possibly make. First, counselors/consultants might give educational materials to hired workers to lessen the concern that consumers or workers could be injured because so few workers receive training in how to do their jobs. Second, counselors could be made aware of local caregiver support groups and sources of information (such as books, websites, or informational brochures) on how to deal with stress related to caring for a family member or friend, and then trained to refer caregivers to them. Third, the state could prepare materials (printed or videotaped) for consumers and their families, alerting them to the fact that workers often feel that the consumer and the consumer's family don't respect the work they do. These materials could suggest ways to minimize such tensions.
Finally, while both related and unrelated hirees have high levels of satisfaction under the program, that conclusion begs the following question: Could this highly successful program benefit far more consumers if it provided a list of people who wanted to become workers to interested consumers who were unable to hire family members or friends? Furthermore, such a listing could help program participants find suitable replacements if their current hired workers were unable or unwilling to continue in the positions. On the other hand, offering such a list could create opposition from the states' home care industry and could put the state at risk of lawsuits if a worker hired from the state's list abused the consumer in some way. States may also wish to consider whether more support and training should be offered to family caregivers to help them avoid the situation of feeling unappreciated and emotionally strained. These efforts could help the workers remain in the job longer, perhaps until the consumer no longer wished or was able to continue living at home.