Beyond the institution versus home care dichotomy: Lessons from a feeding-tube medical home

Abstract

Decades of rights-based advocacy for people with disabilities have transitioned long-term care in the United States from institutional settings to home-based care provided by interdependent care networks. This paper argues that policies and practices within these home-based care systems unintentionally produce and often perpetuate unrecognized structural violence on the recipients of care and the caregivers. Understanding the caregivers' experiences through a case study of a Facebook feeding tube family support group exposes the geographic realities and ableist underpinnings of the home-based care model that undergird this violence. Further, I illustrate the contradictions of “home is best” ideology by focusing on three interwoven themes: structural dependency on unpaid mother-experts, spatio-temporal erasure through decentralization, and invasive surveillance structures. This research attends to how home-based care, as a practice and a place, reflects broader patriarchal, gendered, and neoliberal concepts of autonomy and individual rights as expressed through policies like “person-centered” care and the medical home model. While this analysis has theoretical, methodological, and policy implications, more important is the contextualization of family experiences that sometimes impacts life and death.