Beneficiary Work: The Hidden Labor of Medicaid Users Pursuing Cross-State Moves

For users of Medicaid personal care assistance (PCA) services and their families, interstate variation in eligibility and service availability act as structural barriers to cross-state movement. However, program users desire and pursue cross-state moves. In this article, we provide a grounded theory analysis of 18 interviews with Medicaid PCA users with physical disabilities who expressed desire for or pursued cross-state moves. Our analysis identified six forms of previously unnamed and unrecognized work. As PCA users plan or pursue cross-state moves, they are also (1) assessing service ecosystems, (2) finding the right door, (3) persisting through the bureaucratic gauntlet, (4) advocating for systems cooperation, (5) reestablishing networks of support, and (6) responding to service gaps/lapses. Collectively, we describe this hidden labor as beneficiary work, the unremunerated work that program users must do in order to retain access to benefits for which they qualify. Beneficiary work, while hidden, is not optional; it is necessary for continued access to community and broadly, for survival. Identifying and describing beneficiary work expands on Feminist and interactionist perspectives on disability, poverty, and work, and highlights the need for changes to Medicaid policy that address PCA users as mobile citizens.