Jennifer Schore and Barbara Phillips
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/daltcp/home.htm 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.
Roughly 1.2 million people receive Medicaid-funded, noninstitutional supportive services. Traditionally, many of these services are provided by home care agencies under nurse supervision and help recipients with such activities as bathing, using the toilet, meal preparation, and light housework. Consumer-directed personal assistance is an alternative to agency care. It offers a care model over which recipients have more control: deciding the types of assistance needed and, if human help is desired, hiring, training, supervising, and paying workers and defining workers duties and schedules. Inherent in this model is increased flexibility and control for consumers, but also increased responsibility for decision making and the consequences of those decisions.
Cash and Counseling is a model of consumer direction that gives Medicaid beneficiaries with disabilities a monthly allowance in place of agency services to purchase personal assistance and related goods, as well as support to help direct care and manage the allowance. Arkansas is one of three states (along with Florida and New Jersey) that have implemented a Cash and Counseling demonstration. Its demonstration, IndependentChoices, was open to elderly and nonelderly adults eligible for Medicaid personal assistance services (PAS). Mathematica Policy Research, Inc. (MPR) is evaluating the three demonstration programs.
This report describes the implementation of IndependentChoices by synthesizing information from in-person interviews with program staff, a mail survey of program counselors, and telephone interviews with consumers who had the opportunity to receive the program allowance. It discusses the programs goals and features, how consumers managed their responsibilities under it and made use of its flexibility, and levels of consumer satisfaction with the program. Other reports present estimates of demonstration impacts on beneficiaries, their caregivers, and public costs; describe the types of beneficiaries who chose to participate; describe the features and procedures adopted by IndependentChoices in greater detail; and draw implementation lessons from all three demonstration states.
IndependentChoices Intervention. IndependentChoices provided a monthly allowance based on the hours in the consumers PAS care plan. Consumers were required to develop a spending plan for the allowance to cover purchases that promoted independence or increased mobility. When consumers enrolled, the average monthly allowance was roughly $320. IndependentChoices provided counseling and bookkeeping services at no direct cost to consumers. Counselors were required to review spending plans and monitor consumer well-being and the use of the allowance. They were available to train consumers about program rules and employer responsibilities. A bookkeeper was available to write checks for goods and services purchased with the allowance and to manage payroll taxes and unemployment insurance for consumers who hired workers. Almost all consumers chose to use the bookkeeper. In addition, consumers could select representatives to assist them in directing care or to make decisions about whom to hire or how much to pay. Just over 40 percent of consumers chose representatives when they enrolled, usually family members who assisted them previously.
Outreach and Enrollment. IndependentChoices hired nurses living in different regions of the state to conduct a community information campaign and enroll beneficiaries. It also sent a series of letters signed by the governor to PAS users, which were particularly effective in generating interest in the program. IndependentChoices did not screen applicants for appropriateness, in part because such screening was inconsistent with the philosophy of consumer direction. The program enrolled 2,008 beneficiaries between December 1998 and April 2001. MPR then interviewed them and randomly assigned half to receive the IndependentChoices intervention and half to the control group, eligible for agency-delivered PAS as usual. Enrollment represented about 11 percent of PAS users in the state in a given year.
The typical consumer was an elderly white female, living with someone other than a spouse. Just over a third of consumers reported living in a rural part of the state. Nearly all consumers had paid or unpaid help with personal care and household activities when they enrolled in the program; however, about two-thirds reported they needed more help. Nearly a third of the consumers were dissatisfied with the paid help they had been receiving.
Use of the Allowance. Just under 85 percent of consumers assigned to receive the IndependentChoices intervention had received the monthly allowance for at least one month by the time the evaluation conducted its nine-month follow-up survey. (Almost all of the other 15 percent had died or had disenrolled from the program.) Just under 80 percent hired a worker with the allowance during that time--in almost all cases, someone previously known to them. (Consumers could hire anyone except spouses and representatives or could meet their care needs without hiring, by purchasing care-related goods and services.) A third hired more than one worker. Most workers helped with housework and personal care, but many helped with routine health care or provided transportation (for example, for shopping, a service which Arkansas Medicaid did not permit agency workers to provide). Most received between one and three hours of paid care per day; three-fourths of paid workers also provided unpaid assistance. Many workers helped when it was difficult to get help from an agency: weekends, weekday evenings, and early on weekday mornings. A tenth of consumers, however, tried to hire a worker but were unable to do so. Program staff reported that consumers who had not identified a family member or friend as a potential worker at enrollment were likely to have trouble hiring a worker.
Nearly half of all consumers also used part of their allowance to purchase personal care supplies, although such purchases used only about a tenth of the monthly allowance, on average. About a third took advantage of the option of receiving up to 10 percent of the allowance in cash to use at their discretion.
There was no evidence that consumers or their representatives materially misused the program allowance. Almost all consumers chose to use the bookkeeping service rather than receive the allowance directly. To ensure that the program allowance was not misused, counselors compared worker timesheets and check requests to spending plans before checks were issued. Counselors also reviewed receipts for all consumer purchases (other than those made with the discretionary cash) for consistency with spending plans. On the other hand, just over a tenth of consumers reported that program spending rules kept them from getting things that would have enhanced their independence. Counselors reported having to deny the use of the allowance to purchase furniture and appliances or make home or vehicle modifications unrelated to disability.
Satisfaction with IndependentChoices and Overall Care. Ninety-six percent of consumers (including those who disenrolled) said they would recommend the program to others who wanted more control over personal care services. Among respondents who received the allowance, more than half (56 percent) said the allowance improved the quality of their lives a great deal, and another 25 percent said it improved their lives somewhat. Ninety-four percent said they were satisfied with their overall care arrangements, and 69 percent said they were very satisfied. Nearly all consumers who hired a worker with the allowance were satisfied with their relationship with the worker and how and when the worker performed tasks.
Despite these high levels of satisfaction, 189 consumers (19 percent) disenrolled from the program voluntarily within a year, which underscores the fact that consumer direction is not for everyone. The most commonly cited reasons were that the allowance was too low, they changed their minds about traditional services, or they had difficulty with employer responsibilities such as initially hiring or replacing workers.
Summary and Implications. The Arkansas IndependentChoices program is one of three Cash and Counseling demonstrations testing a model of consumer direction that provides a monthly allowance to consumers (or their representatives) to purchase personal assistance-related goods and services and provides the support of counselors and bookkeepers. Consumers included in its evaluation were highly satisfied with the program and their care. Program staff were pleased that IndependentChoices increased the availability of personal assistance for consumers affected by the states chronic worker shortage and for the minority of consumers who were dissatisfied with agency-provided assistance.
Consumer-directed personal assistance in a publicly funded program like Medicaid raises concerns among policymakers, however. These concerns include (1) whether consumer direction should be available to all PAS users, (2) whether to allow family members who might otherwise help without pay to be hired as workers, (3) how to ensure care quality for consumers, (4) how to ensure that workers are trained adequately and treated fairly, and (5) how to avoid fraudulent use of a cash benefit. The structure of IndependentChoices and its procedures addressed each of these concerns to a greater or lesser degree.
Appropriateness screening did not appear to have been necessary for IndependentChoices, although use of representatives was common.
Any beneficiary of any age who was eligible for the Arkansas Medicaid PAS benefit, including those with cognitive or behavioral problems, could enroll in IndependentChoices. Program staff believed that individuals would self-select for the program once they understood the responsibilities and risks involved. Moreover, consumers could identify representatives to help them manage the benefit or to manage it on their behalf. (Counselors reported that more than three-quarters of representatives acted in consumers best interest and according to their wishes, while only about 1 percent had a serious divergence of wishes or interests from consumers.) The program also reserved the right to terminate a consumer from IndependentChoices and return him or her to agency services if the program seemed unsuitable. That IndependentChoices terminated only 3 of the 1,004 mostly elderly consumers who enrolled and that reports of abuse of consumers or of the allowance were negligible, supports the idea that appropriateness screening was not necessary for this program.
Allowing consumers to hire relatives appeared to have been critical to program success.
Although IndependentChoices consumers were not allowed to hire spouses as personal assistance workers, more than three-quarters hired other family members, and a fifth hired acquaintances. Family and friends represented a labor pool unavailable to agencies, many of which experienced severe worker shortages during the demonstration. Outreach staff reported, however, that some beneficiaries--particularly nonelderly ones--did not apply to the program because they could not hire their spouses.
Regular counselor monitoring and followup identified and resolved potential consumer safety and care quality issues.
There was no evidence from consumers, counselors, or state program staff that participation in IndependentChoices led to any adverse effects on consumers health and safety. IndependentChoices oversaw safety and care quality primarily through regular counselor contacts with consumers by telephone and in person. Subtle behavior changes or other cues in telephone contact sometimes prompted a home visit by a counselor, occasionally unannounced. Reports of consumer abuse were rare, and consumers overwhelmingly were satisfied with the program and care arrangements. Furthermore, a companion analysis found that IndependentChoices had no deleterious effect on objective, care-related outcomes like falling or developing decubiti.
Although few workers were offered fringe benefits, reports of worker abuse were rare in IndependentChoices.
Critics of consumer direction are concerned about the welfare of workers in the absence of collective bargaining and agency protection from abusive caregiving situations. Reports by IndependentChoices counselors of worker abuse were rare. However, the program did not have procedures to receive and address worker complaints against consumers or their representatives. Thus, some worker complaints may have gone unreported. Nevertheless, a companion analysis of a worker survey found reports of workers hired with the IndependentChoices allowance concerning wages, physical caregiving strain, and satisfaction with working conditions to be similar to reports of workers for evaluation control group members.
Counseling and bookkeeping procedures helped make abuse of the allowance rare.
There was no evidence that consumers or their representatives materially misused the allowance. Although consumers could receive the monthly allowance directly, almost all chose to use the programs optional bookkeeping service to pay workers and other providers. The program monitored allowance use by having IndependentChoices counselors compare each consumer check request with the consumers spending plan. Counselors also reviewed the receipts consumers were required to keep for purchases other than those made with the relatively small discretionary cash disbursement consumers could take from the allowance.
In Conclusion. IndependentChoices successfully addressed many important concerns about consumer direction. The program successfully implemented a consumer-directed program using the Cash and Counseling model without major operational difficulties or adverse outcomes for consumers, their families, or their caregivers. It provided a benefit that allowed consumers with a range of disabilities to meet their personal assistance needs with a high level of flexibility. Agency reports of worker shortages during the demonstration suggest that some consumers who hired family and acquaintances would not have been able to obtain care from agencies had they been in the traditional program. For all these reasons, most consumers were extremely satisfied with the program and care arrangements.