Disability and Corporeal (im)Mobility: Medicaid Impacts Personal Care Attendant Service Users' Cross-state Plans and Pursuits

• In Event: 2449 - Disability and Society: Systemic Supports, Barriers, and Inequality

Abstract

Purpose. This paper addresses how Medicaid personal care attendant (PCA) services users with physical disabilities experience barriers to cross-state movement arising from the interstate
variation in Medicaid PCA programs. Using the Moves in Context model, this analysis focuses on the structural-level influences on individual cross-state move trajectories. Methods. Semistructured
interviews were conducted with 18 Medicaid PCA services 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. 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 in terms of: 1) contending with conflicts between the need for PCA 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, by 4) using metaphors of immobility and 5) recognizing intrastate confinement. 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 users.

Author

• Brian R. Grossman, University of Illinois at Chicago