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Frank Thompson, Pamela Nadash, Michael K. Gusmano, Edward Alan Miller, Federalism and the Growth of Self-Directed Long-Term Services and Supports, Public Policy & Aging Report, Volume 26, Issue 4, 2016, Pages 123–128, https://doi.org/10.1093/ppar/prw020
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Introduction
The evolution of federal and state policy over the last 35 years has expanded the availability and use of Medicaid home and community-based services (HCBS). Within HCBS, pressure has risen to give participants more control over services via self-directed service options. We document changes in federal legislation, regulation, and practice that have encouraged the growth of self-directed long-term services and supports (LTSS). We also explore how policymakers and advocates foster self-directed LTSS, even as these programs are folded in Medicaid managed care plans—an accelerating trend that presents challenges to the self-directed approach.
Federal Policy and Participant-Directed LTSS
From 1965 to 1980, Medicaid offered states the option to provide personal assistance in the home and community to those needing help with activities of daily living (e.g., bathing, eating, dressing). Many states declined to pursue this option; thus, nursing facility care, as a mandatory benefit under the program, dominated Medicaid LTSS provision. In 1981, legislation opened the gates to the expansion of Medicaid HCBS when Congress, with the support of the Reagan administration, implanted Section 1915(c) into Medicaid law, permitting states to apply for waivers to pursue HCBS. These waivers allowed state officials to circumvent Medicaid requirements that many found onerous ( Thompson, 2012 , pp. 111–113). With federal approval, for instance, states could use 1915(c) waivers to limit HCBS to certain geographic areas rather than be obliged to provide Medicaid services statewide. The waivers also permitted states to sidestep the Medicaid service entitlement, whereby they had to offer a chosen service to all Medicaid enrollees who qualified for it. States with waivers could thus cap the number of HCBS participants and establish waiting lists. In 1997, the Health Care Financing Administration issued regulations that allowed for the use of “consumer-directed” personal care services and stated that Medicaid beneficiaries could hire, train, and fire their own providers, with state oversight of provider qualifications and monitoring of service delivery ( Department of Health and Human Services, 1997 ). In these and other ways, federal policy promised states considerable discretion to shape their HCBS initiatives as they sought to expand them.
