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

Abstract

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.

Implications for Rehabilitation

•  Interstate variation in Medicaid PCA services and cross-state moves

•   • Medicaid personal care assistance service users desire and pursue cross-state moves, especially when drawn by educational or employment opportunities.

•   • Interstate variation in Medicaid policy negatively impacts the ability for PCA service program users to pursue these moves due to gaps or delays in service access, creating inequity in opportunity and feelings of second-class citizenship.

•   • Individual users of Medicaid PCA services need information and services as they plan pursue cross-state moves.

•   • States and the Center of Medicare and Medicaid Services should offer guidance to support the independent living, educational, and economic goals of users of PCA services who desire cross-state moves.

Keywords:

• Personal assistance services
• personal care attendant services
• Medicaid
• home and community-based services
• mobility
• citizenship
• interstate variation

Acknowledgements

I am grateful to the interview participants who trusted us with their stories. For their invaluable research assistance, thanks to graduate students Ashley M. Volion (AMV, data collection, transcription, analysis, and member checks) and Meghann O’Leary (transcription). I am grateful to Courtney Mullin for her editorial support in the preparation of this manuscript. I also am thankful to the anonymous reviewers and to Drs. Kruti Acharya and Susan Magasi for their helpful feedback on earlier drafts. Any errors or lack of clarity remaining in the manuscript are solely my responsibility.

Disclosure statement

This work was supported by the Camus Research Board (CRB) Award from the Office of Vice Chancellor for Research (OVCR) at the University of Illinois at Chicago (UIC).