Article
Lori Simon-Rusinowitz, Ph.D., Kevin J. Mahoney, Ph.D., Sharon M. Desmond, Ph.D., Dawn M. Shoop, Ph.D., Marie R. Squillace, M.A., and Robert A. Fay
As long-term care(LTC) expenditures have risen, policymakers have sought ways to control costs while maintaining consumer satisfaction. Concurrently, there is increasing interest within the aging and disability communities in consumer-directed care. The Cash and Counseling Demonstration and Evaluation (CCDE) seeks to increase consumer direction and control costs by offering a cash allowance and information services to persons with disabilities, enabling them to purchase needed assistance. The authors present results from a telephone survey conducted to assess consumer preferences for a cash option in Arkansas and describe how findings from the four-State CCDE can inform consumer information
INTRODUCTION
As LTC expenditures have risen, policymakers have sought new ways to control costs while maintaining or increasing consumer satisfaction. Concurrently, there is increasing interest within the aging and disability communities in consumer-directed care (Kapp, 1996; Simon-Rusinowitz and Hofland, 1993; Ansello and Eustis, 1992; Mahoney, Estes, and Heumann, 1986). One such model, “cash and counseling,” offers a cash allowance and information services to persons with disabilities, enabling them to purchase the services, assistive devices, or home modifications that best meet their needs. The CCDE is cosponsored by RWJF and DHHS/ASPE. The demonstration seeks to maximize consumer choice and promote efficiency as consumers who shop for the most costeffective providers may be able to purchase additional and more individualized services (Kapp, 1996).
In this article, we present findings from a telephone survey conducted to assess consumers’ preliminary interest in the cash option versus traditional services in Arkansas, one demonstration State. As this preference survey provides background information for the CCDE, we begin with a description of the four-State demonstration and evaluation to provide a context for the Arkansas survey findings. Although the survey results will guide several aspects of program development, we focus on one immediate application—guidance in developing communications and social-marketing materials to assist Arkansas in its efforts to inform consumers about the CCDE. We also highlight key policy issues addressed by the survey.
BACKGROUND
Consumer-directed care, which emanated from the disability-rights and independentliving movements, allows maximum consumer choice and control (DeJong, Batavia, and McKnew, 1992). These movements, which primarily involved younger persons with disabilities, have been promoting consumer-directed care for two decades. The aging community began to adopt consumer-direction principles more recently, with a movement to develop a coalition between the aging and younger disabilities communities slowly emerging in the mid-1980s (Simon-Rusinowitz and Hofland, 1993; Ansello and Eustis, 1992; Mahoney, Estes, and Heumann, 1986). Interest in consumer choice has expanded among some leaders in the aging community in the early 1990s, in part because of a belief that consumer-directed care may lead to much-needed cost savings. The emphasis on consumer choice and control in the language of the 1994 Health Security Act (Kapp, 1996) exemplifies this increased interest.
EXISTING PERSONAL ASSISTANCE SERVICE PROGRAMS1
Personal assistance services (PAS) encompass a range of human and technological assistance provided to persons with disabilities who need help with certain types of activities. These include activities of daily living (ADLs), including bathing, dressing, toileting, transferring, and eating, and/or instrumental activities of daily living (IADLs), such as housekeeping, cooking, shopping, and laundry, as well as managing money and medication. Public or private third-party payers can use any of three PAS financing methods: (1) cash benefits (payments to qualified clients or their representative payees); (2) vendor payments (a case-manager determines the types or amounts of covered services and arranges for and pays authorized PAS providers to deliver these services); and (3) vouchers (clients use funds for authorized purchases). The CCDE will evaluate the impact of cash benefits.
In the United States, most existing public programs that finance PAS—including such major funders as Medicaid’s optional personal care services benefit and home and community-based LTC waiver programs— follow a vendor-payment model. That is, the program purchases services for consumers from authorized vendors (i.e., service providers or equipment suppliers). In some programs, the list of covered services and authorized vendors is quite restricted. Other programs may have a broader range of covered services, adding adult day care, transportation, home modifications, and assistive devices. Clients may sometimes hire independent providers (i.e., workers not employed by home health agencies) to be in-home aides.
Until recently, the prohibition on direct payments to Medicaid clients was rarely questioned. However, many State program officials have come to share the concerns of disability-rights advocates who want PAS programs that promote consumer choice and avoid program rules that may foster dependency in the name of consumer protection and/or public accountability (Litvak, Zukas, and Heumann, 1987; Litvak and Kennedy, 1990, 1991). In addition, State officials have a strong interest in achieving program economies. Most Medicaid PAS programs mandate that case managers (registered nurses and/or social workers) assess clients, develop and monitor care plans, and authorize provider payments. Case management can be expensive, and researchers and administrators question whether it should be uniformly required (Jackson, 1994; Geron and Chassler, 1994). Hence, reasons for the growing interest in a cash option are savings on program administration and enhanced consumer empowerment.
Cash-allowance programs are currently very small because they involve “Stateonly” funds. States cannot use Medicaid to fund cash allowances that permit clients to purchase their own services because of Federal restrictions on direct payments to clients. Consequently, it has not been possible to evaluate large programs with a cash option. This policy-driven demonstration and rigorous evaluation will provide information about the costs, benefits, and implementation issues involved in a cash option, so that State and Federal policymakers can make informed decisions about implementing this LTC model.
DEMONSTRATION AND EVALUATION DESIGN
As the national program office for this large project, the UMCA directs and coordinates the demonstration, oversees the evaluation, and provides technical assistance to the demonstration States. The national program office works in conjunction with the project management team, comprised of RWJF and ASPE project officers, the evaluation team leader from Mathematica Policy Research, Inc., and advisors from the National Council on the Aging, HCFA, and the Social Security Administration.
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