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

Abstract

AbstractDecades 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.