Consumer Enrollment and Experiences in the Cash and Counseling Program

Medicaid supportive services, traditionally prescribed by physicians and provided by home care agencies under nurse supervision, help recipients with activities such as bathing, using the toilet, meal preparation, and light housework. The traditional system of care, while adequate for many recipients, has been criticized for overmedicalizing services and not being flexible enough to effectively meet recipient needs. Consumer-directed care, as an alternative to agency-delivered services, offers a “constellation of services, assistive technologies, and other supports” over which recipients (or their representatives) have control. These include: (1) deciding the types of assistance needed, and (2) if human help is desired, hiring, training, supervising, and paying workers, and defining workers' duties and how and when they are performed. Consumer direction is based on the premise that, because personal assistance is low tech and nonmedical, it does not require the intervention of medical professionals. Rather, consumers should be empowered to make informed choices about assistance and provided with supports to take control of it (Doty, Kasper, and Litvak 1996; Eustis 2000; Stone 2000, 2001; Benjamin 2001). Consumer-directed care in a publicly funded program like Medicaid raises many concerns. These include (1) whether consumer direction should be available to people with cognitive deficits or elderly people, (2) whether offering an allowance in lieu of agency services itself increases the demand for services, (3) whether hiring family members results in a reduction in unpaid care, and (4) in the absence of agency oversight, how to assure care quality, minimize abuse of the benefit, and ensure that workers are treated fairly (Doty, Kasper, and Litvak 1996; Kapp 2000; Benjamin 2001; Kane and Kane 2001; Donlin 2002). On the other hand, supporting choice and control over personal assistance resonates strongly with “basic American values,” as well as having the potential to better meet individual needs. Moreover, consumer direction could address the perennial shortage of personal assistance workers by enlarging the worker pool; it also might be less costly because agencies would not be responsible for hiring, training, and supervising directly hired workers (Eustis 2000; Stone 2000). This paper describes the experiences of Medicaid beneficiaries who were eligible for and volunteered to participate in the Cash and Counseling demonstration and who subsequently were randomly assigned to the evaluation's treatment group (referred to below as “consumers”). The paper addresses the following questions about consumer experiences with enrollment and key program features: Who enrolled? Who went on to receive the allowance and how promptly? How did they spend the allowance? How satisfied were consumers with the program? It concludes by examining how program features addressed key policy concerns about consumer direction in the Medicaid program. Data for this paper come from several sources. Evaluation telephone surveys, program records, and Medicaid data quantify consumer experiences in the program. The evaluation conducted a baseline interview and two follow-up telephone interviews with consumers. The follow-up interviews were at 4–6 months and at 9 months after enrollment; they asked about experiences in and satisfaction with Cash and Counseling. (Before random assignment, baseline interviews were conducted with the 3,285 beneficiaries who ultimately were assigned to the treatment group. Their rates of response to the follow-up interviews were between 88 and 93 percent; Carlson and Phillips 2003.) Records kept by each program contained consumers' dates of enrollment and disenrollment, reasons for disenrollment, and uses of the allowance during month 8 after enrollment, as well as limited demographic information. Program staff also interviewed beneficiaries who inquired about the program to determine why they chose to participate or not to participate. Medicaid data were the source of estimates of Medicaid spending before program enrollment, indicators of Medicare coverage, and program participation rates. (The interested reader is referred to the “Source” note on each table, which identifies individual data sources for each estimate presented.) This paper uses qualitative information from two sources to provide context for consumer experiences. The evaluation included site visits with state program staff and counselors conducted about 18 months after enrollment began. (More detailed descriptions of program operations and site visit methodology can be found in Phillips and Schneider 2002, 2003, 2004.) Information from the site visits cited in this paper include descriptions of: program eligibility criteria and reasons programs declined to use appropriateness screening; the use of purchasing plans to initiate the receipt of the monthly allowance; the roles of consumer representatives, program counselors, and fiscal intermediaries; and program procedures to limit consumer abuse and neglect, and misuse of the allowance. The site visits were supplemented by a mail survey of counselors approximately 18 months after each program began to gather information about their experiences with and impressions of the program. (Surveys were completed by 224 of 272 active counselors; Carlson and Phillips 2003.)