CW: Institutional Bias
In September 2025, Ravi Mehta went to the hospital anticipating a routine visit—a simple adjustment to the settings on his ventilator. It was something he had done many times before. The doctors treated him, monitored him, and gave him the okay to return home.
However, it never happened. Instead, Ravi found himself trapped within a healthcare system that could no longer provide the round-the-clock support essential for his safety, turning what should have been a brief appointment into an unplanned eight-month hospital stay.
Ravi lives with Duchenne Muscular Dystrophy and depends on full-time home care to maintain his independence. When that care was discontinued by the National Health Service, everything else fell apart. Without caregivers available 24/7, returning home was unsafe, even though he was healthy enough to do so. What should have been a short disruption instead became an indefinite confinement, controlled not by his health condition but by a breakdown in the support system meant to sustain him.
His story is far from unique. Across the country, 33-year-old Lucinda Ritchie faced a similar crisis. After nearly a year spent in the hospital, she eagerly anticipated returning to her accessible home—a space tailored to her needs, where she lived independently with full-time nursing care. Instead, she was relocated to a nursing home an hour away, a decision she insists she never consented to. Within days, her health worsened, requiring a hospital readmission. Lucinda described feelings of devastation and fear. For her, living at home was not a luxury—it was the foundation that kept her stable.
These narratives echo a troubling history. For much of the 20th century, disabled people were routinely placed in large institutions, believed to be safer or more therapeutic. In reality, these institutions were isolating and restrictive, cutting people off from family and the community and limiting autonomy. During the 20th-century disability activists challenged this approach, arguing that the real issue was not their disabilities, but the systems that excluded them. Their advocacy helped shift policies toward community-based care and away from institutionalization.
Yet, this progress remains fragile. Today, institutionalization often occurs not out of medical necessity but due to failures in the systems supporting independent living. When home-care agencies struggle to staff positions, when funding is delayed, or when bureaucratic errors occur, hospitals and nursing homes become default holding places. Independence is unstable, hinging on coordination, financing, and a dependable workforce—all increasingly under strain.
In the United States, these challenges are visible in debates surrounding Medicaid. Public discourse often centers on budgets and political disputes, but for millions of disabled people and older adults Medicaid is a lifeline.
Medicaid is the only insurance that funds private duty nursing care, PCA services, and other home and community-based services that help prevent unnecessary institutionalization. Without it, many people would be forced into nursing homes or institutions simply because no other support exists.
I know this reality firsthand. Living with cerebral palsy, I have depended on personal care assistants since childhood. My PCA helps me with daily tasks—dressing, bathing, cooking—everything that makes independent living possible. Without this support, I couldn’t reside in my own apartment or be part of my hometown. Medicaid is not an abstract policy for me; it is the foundation that allows me to live life on my own terms.
Last month, my PCA hours were cut. I spent three exhausting weeks preparing an appeal, collecting documentation, and explaining why each hour is vital. I am still awaiting my fair hearing. These decisions are more than administrative cuts—they determine whether life is stable. They create ongoing anxiety over how basic needs will be met.
Across different countries and systems, a familiar pattern emerges. Hospitals meant for short-term care turn into long-term holding places. Nursing homes become the “practical” default when community support is lacking. Staffing shortages, funding gaps, and red tape trap people in places they never chose.
What makes these stories so compelling is how fragile independence becomes when the systems supporting it fail. Survival alone is not a measure of care. The real measure of care is whether people can live with dignity, stability, and independence once care is available.
Sources:
Hixenbaugh, Mike. “Families Caring for Disabled Relatives Face Unthinkable Choices as Medicaid Cuts Loom.” NBC News, 15 May 2026, https://www.nbcnews.com/news/us-news/trump-medicaid-cuts-threaten-caregivers-disabled-family-members-rcna344930.
Leys, Tony. “Trump’s Cuts to Medicaid Threaten Services That Help Disabled People Live at Home.” KFF Health News, 5 Mar. 2026, https://kffhealthnews.org/medicaid/medicaid-cuts-disabilities-home-community-based-services-iowa.
Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, 5 Nov. 2022, https://www.npr.org/2022/11/05/1134426128/lois-curtis-who-won-a-landmark-civil-rights-case-for-people-with-disabilities-di.
Witherington, Erica, and Nikki Fox. “Disabled Man ‘Rotting’ on a Hospital Ward – Despite Being Fit to Go Home.” BBC News, 19 May 2026, https://www.bbc.com/news/articles/c2e2zvlyy38o.
Witherington, Erica. “Disabled Woman Put in Nursing Home Against Her Will Says She Feels ‘Betrayed.’” BBC News, 24 Feb. 2026, https://www.bbc.com/news/articles/czj1ndzz9xyo.