Disability and corporeal (im)mobility: how interstate variation in Medicaid impacts the cross-state plans and pursuits of personal care attendant service users

Purpose: This paper addresses how Medicaid personal care attendant (PCA) service users with physical disabilities experience barriers to cross-state movement arising from the interstate variation in these programs. Using the Moves in Context model, this analysis focuses on the structural-level influences on individual cross-state move trajectories. Methods: Semi-structured interviews were conducted with 18 Medicaid PCA service users who were considering or pursuing cross-state moves motivated by opportunity. Questions addressed the cross-state move process; social participation; education and employment; and access to PCA services. Grounded theory methods were used to analyze interview transcripts and generate analytic codes and categories. Findings: Participants described their experiences with interstate variation in Medicaid PCA services in terms of (1) contending with conflicts between the need for services and the desire for cross-state moves; (2) navigating hoops of fire; and (3) recasting imagined futures. Participants also expressed experiences of intrastate confinement, or being stuck in their current state (4) using metaphors of immobility and (5) recognizing intrastate confinement as a form of categorical exclusion. Conclusion: Interstate variation in Medicaid PCA policy impedes program users' ability to pursue educational and occupational advancement, and leads to feelings of second-class citizenship. Policy changes should be explored to affirm the autonomy of Medicaid PCA service users.