INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. The Federal Role in the Move Toward Consumer Direction


Since the early 1990s, the Office of Disability, Aging, and Long-Term Care Policy (DALTCP), a division of the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services (DHHS), has made consumer direction in long-term care a major focal point of our policy research agenda. The largest and most visible of its research initiatives on consumer-directed services is the Cash and Counseling Demonstration and Evaluation, a large-scale social experiment designed to explore the possibilities and test the limits of consumer direction in publicly funded (Medicaid) home and community-based services programs. Mahoney and colleagues describe this project in detail in this issue. This article is intended to provide historical perspective on the federal government's involvement in the Cash and Counseling Demonstration and Evaluation as an example of the federal role in consumer direction. Specifically, the article describes how previous research and analysis led to DALTCP's interest in sponsoring this social experiment and shaped our thinking about is purpose and design.

The immediate antecedents of Cash and Counseling can be found in the long-term-care proposals included in President Clinton's 1993 Health Care Reform Plan. However, in a deeper sense, understanding where the idea came from requires situating this project in the context of a research tradition that includes previous and ongoing federally sponsored research on "consumer-direction," interest in learning from foreign models of providing publicly funded home- and community-based services, and reflection on the lessons learned from previous social experiments focusing on home- and community-based "alternatives to institutional care," in particular, the Channeling Demonstration.

Although Cash and Counseling is the centerpiece of DALTCP's research agenda on consumer direction, the project is not ours alone. The design and implementation of the demonstration and its controlled experimental design evaluation would have been impossible had DALTCP, a small research and policy analysis office with limited resources, not been able to enter into and sustain a complex partnership involving a major private philanthropy, multiple federal agencies both within and outside to the Department of Health and Human Services, several states (and multiple agencies within each of those states), two universities, an independent research organization, a major national advocacy group, as well as numerous private consultants.

It is particularly important to acknowledge the key role of the Robert Wood Johnson Foundation in joining us to sponsor Cash and Counseling as well as the RWJF's sponsorship of related research and demonstration projects that have influenced the experiment. Certainly, without the foundation's financial support, there would be no Cash and Counseling Demonstration and Evaluation. Although DALTCP is a cofunder with the RWJF of the rigorous scientific evaluation, the RWJF has provided all of the funding for the demonstration itself; that is, the planning and implementation grants to the participating states as well as funding for oversight, coordination, and technical assistance provided by or through the national program office for Cash and Counseling at the University of Maryland Center on Aging. Kevin Mahoney, national program office director, and Lori Simon-Rusinowitz, deputy director, have provided indispensable day-to-day leadership. We also appreciate the willingness of four states, Arkansas, New York, New Jersey, and Florida, to participate as demonstration sites. Although New York was unable to continue, Arkansas, New Jersey, and Florida have gone the distance from planning to implementation; indeed, Arkansas is approaching completion of the evaluation phase of its demonstration (December 31, 2000).

The cooperation of several other federal agencies in granting "research and demonstration" waivers or exemptions to laws and regulations applying to Medicaid, Supplemental Security Income (SSI), Food Stamps, and other means-tested government benefits also merits recognition. The Health Care Financing Administration approved Medicaid waivers under Section 1115 of the Social Security Act. Waivers were required to permit Medicaid funds that otherwise would have purchased personal care services under the Medicaid state plan (New Jersey, Arkansas) or 1915(c) home- and community-based services (Florida) to be paid out as monthly cash allowances available to beneficiaries instead of as reimbursements to service providers. These "1115" waivers were also necessary to permit Medicaid beneficiaries to use their cash benefits to purchase disability-related goods and services not otherwise covered under Medicaid and to suspend the prohibitions against certain family members (spouses and parents of minor children, whose income and assets are deemed available to Medicaid beneficiaries for purposes of financial eligibility determinations) being paid caregivers.

The Social Security Administration and the U.S. Department of Agriculture also agreed to exempt participants in the treatment group from rules related to means-testing that might otherwise have jeopardized treatment group members' eligibility for cash assistance (SSI) payments and Food Stamps. Both agencies have statutory authority to relax these rules in the interests of research, contingent on impact analyses being performed. Although both agencies were highly willing to cooperate, some time-consuming, detailed work was required to decide exactly what types of information the evaluation needed to collect to determine the demonstration's impact on recipients of SSI and Food Stamps. Less formalized understandings were also reached with the Department of Housing and Urban Development (HUD) and the Department of Education to ensure that cash benefits for disability-related services provided under the Cash and Counseling Demonstration would not adversely affect recipients otherwise eligible for low-income housing or income-related educational and vocational rehabilitation benefits.

In sum, policy research involving social experimentation on a large scale requires a considerable investment not only of finances but in team building and teamwork. Leadership and management of the Cash and Counseling Demonstration and Evaluation--which also has been a team enterprise--require holding firm to the original goals of the research and protecting the scientific integrity of its design and methodology while also negotiating for the project's survival and successful implementation within a socio-political-economic environment that is in constant flux.