CW: Institutional Bias
When I first heard Ohio Representative Jennifer Gross’s recent comments on long-term care, I was disappointed. Gross, who is the chair of the Ohio House Medicaid Committee, said, “If it costs more to keep people at home with home-care waivers… then we need to suggest that more people go into long-term care.” Even though she was referring to one state, her statement struck a chord with disabled and older people who rely on Medicaid’s home- and community-based services to avoid institutionalization.
Her remarks have caused heated discussions not only in Ohio but across the country. The remarks reflect how disabled people in the United States are treated and whether they are really entitled to their independence. The 1999 Olmstead Supreme Court decision established that disabled people have the right to receive their care in the most, unrestricted environment.
Still, this promise is far from being fully realized. Labor shortages, rising expenses, insurance difficulties, and inconsistent policies have all contributed to inconsistent care.
Such inconsistencies are actually a reality for me. Because of my cerebral palsy, I have depended on personal care assistants since childhood. My PCA helps me with dressing, bathing, preparing meals, and other household tasks necessary for a person to live independently.
Having a reliabile personal care assistant gives me a sense of freedom and independence. In April, however, the abrupt reduction of my PCA hours left me fearful. For three exhausting weeks, I prepared an appeal. I gathered medical records, documented my daily routine, and argued that each hour was critical.
The state denied my request for a fair hearing, which was upsetting. I know that I cannot give up. I have reached out to local legislators, hoping someone will listen before the consequences become irreversible.
What I am facing is happening nationwide. Disabled people are facing sudden cuts in care, long waiting lists, and complicated appeals processes that can seem nearly impossible to navigate. Even after the hours are awarded, states still lack enough home healthcare workers to fill these positions. This is leading to the loss of people’s independence.
That is the very reason why Gross’s remark struck a chord with me. It expressed a concern many people share: that institutional care could become the default option if home-care turns out to be too expensive or difficult to sustain. Institutions might be the better choice on paper. But the real costs, human, social, and financial, are much higher.
Home- and community-based services help people get out of bed, eat, go to work, and be part of their communities. However, when these services disappear, the ability to be independent disappears as well.
As states are discussing the future of Medicaid, disabled people are monitoring the situation closely and patiently waiting. Some, including me, have already been feeling the effects of these cuts. With every passing day, more and more of us are wondering how long we can continue to maintain our independence.
Source:
Kasler, Karen. “Alleged Fraud Prompts Long List of Potential Changes to Ohio Medicaid.” The Statehouse News Bureau, 27 May 2026,
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.