“Let me live”: barriers to community living for nursing home residents of color

Abstract

Purpose: We explore the systemic barriers to community living that disabled people of color experience, which contribute to institutional placements and difficulties transitioning back to the community. Materials and Methods: We collected and analyzed 26 interviews with disabled people of color who have lived in nursing homes. We used a participatory action research approach and thematic analysis informed by grounded theory methodology. Results: Participants report that 1) unmet acute and chronic health and disability support needs in the community, 2) lacking financial ability to maintain community living individually and interpersonally, 3) significant administrative burden and complex organizational processes, 4) inadequate case management/social work support for community living, 5) insufficient informational support and peer guides to complete transition, and 6) discrimination based on race and disability status (racism/ableism) contributed to nursing home admittance and lengthy/repeated nursing home stays. Participants often faced multiple barriers to community living simultaneously or in succession. Conclusion: Addressing the barriers discussed will take financial and practical effort and investment across the nursing care system. Expanding support structures through Medicaid, Home and Community-Based Services, Money Follows the Person, Department of Housing and Urban Development, and related social programs could facilitate successful nursing home transitions.