Conflicting Narratives of Corporeal Citizenship: Medicaid Personal Care Attendant (PCA) Policy and Program Users’ Experiences of Cross-state Moves

Abstract

Purpose

Medicaid home and community-based services (HCBS) support community living for three million disabled people in the United States. As a state-federal partnership, these programs are highly variable across states. Because eligibility determination and services differ from state to state, this Medicaid structure becomes a barrier for those HCBS users whose desired futures include cross-state moves.

Methods/Approach

I examine narratives of citizenship and personhood for Medicaid HCBS users circulating within policy arenas and explore tensions between these and the stories Medicaid HCBS users tell of their own lives. Specifically, I explore the degree to which narratives about Medicaid HCBS users include an affirmation of the right to cross-state movement. My analysis includes data from public statements from policy makers, legislative texts, organizational framings of Medicaid policy, and 18 semi-structured interviews with Medicaid PCA users who desired or pursued cross-state moves.

Findings

I conclude that institutional narratives of Medicaid HCBS users are an inadequate representation of the stories told by those who rely on this program and, in consequence, programs stemming from policy fail to offer services that would allow service recipients to pursue their objectives.

Implications/Value

Medicaid HCBS policy is part of a broader story of disability rights progress over the last four decades, making its role as an obstacle to cross-state movement a bit of a paradox. This paradox points to the value of narrative analysis in calling attention to invisible contradictions and the need for institutional and organizational change.

Citation

Grossman, B.R. (2019), "Conflicting Narratives of Corporeal Citizenship: Medicaid Personal Care Attendant (PCA) Policy and Program Users’ Experiences of Cross-state Moves", New Narratives of Disability (Research in Social Science and Disability, Vol. 11), Emerald Publishing Limited, Leeds, pp. 185-199. https://doi.org/10.1108/S1479-354720190000011021