Rationing Rights: Administrative Burden in Medicaid Long-Term Care Programs

Context: States use Medicaid waivers to provide supports for disabled people in communities rather than in institutions. Because waivers are not entitlements, those deemed eligible are not guaranteed these supports. How do states, in practice, use bureaucratic procedures to ration this "conditional" right? Methods: Drawing on primary and secondary data, the authors analyze waiver programs and document state administrative procedures that indirectly and directly ration access. Findings: Burdens indirectly limit disabled people's access to Medicaid home- and community- based services via a complex array of waiver programs that exacerbate costs associated with gaining eligibility. In addition, burdens directly limit access via wait lists and prioritization among the eligible. There is also evidence that states strategically deploy opaqueness to provide political cover for unpopular wait lists. The overall process is opaque, confusing, and time intensive, with burdens falling hardest on marginalized groups. Conclusions: Administrative burdens impede disabled people's efforts to exercise their right to live in the community as afforded to them under the American with Disabilities Act. The opaqueness and associated burdens with waiver programs are a way to conceal these burdens, thereby demonstrating how burdens "neatly carry out the 'how' in the production of inequality, while concealing ... the why" (Ray, Herd, and Moynihan 2023: 139).