Tori Kantor’s life is full of ordinary moments. She enjoys painting, cooking, and sharing her world on social media. However, those everyday moments are accompanied by a reality that many disabled people know all too well: independence is only possible when adequate support exists.
Kantor, who is quadriplegic because of a rare genetic condition called Multicentric carpotarsal osteolysis. It is an extremely rare condition that causes the small bones in the wrists and feet to gradually break down, leading to weak and unstable joints. It can also cause kidney problems, usually starting with protein in the urine and sometimes progressing to kidney failure. Some people may have facial differences, such as a triangular face, a small jaw, or prominent eyes, and intellectual disability may also occur.
She needs around-the-clock care. Unfortunately, gaps in her Medicaid-funded care leave her without support for much of the week. Medicaid only allows her to have 40 hours of in-home care per week.
Discussions about Medicaid are often framed around budgets, regulations, and eligibility requirements. The human impact can easily be forgotten. Hours of care become numbers on a spreadsheet rather than essential care that helps someone take medication, prevent pressure injuries, respond to a medical emergency, or simply remain safe at home.
For disabled people, those hours represent something much larger than a line item in a state budget. They represent dignity, security, and the ability to participate fully in their communities. That reality resonated deeply with me.
Earlier this year, MassHealth took away my overnight personal care assistant (PCA) hours. This meant that I lost fourteen PCA hours per week. On paper, it was another reassessment and another determination about what support I supposedly needed. In reality, it was a reminder of how fragile independence can be.
The decision did not change my disability. It did not change the support I require. What changed was someone else’s assessment of how much help I deserved.
I spent almost two months fighting with MassHealth to get those hours back. Ultimately, I was successful. The process, however, left me feeling deeply discouraged. No one should have to spend months collecting paperwork, writing appeals, and repeatedly demonstrating that they require services to live safely and independently.
The fear is not only about losing services. It is about living with the knowledge that essential support can disappear because of a bureaucratic decision. A reassessment can reduce hours. A decision made by someone who has never met you can change your life.
Programs designed to support community living should make life more predictable, not more unstable. Independence is not achieved by reducing support. For many disabled people, independence is made possible because support exists in the first place.
Across the country, disabled people are navigating reassessments, service reductions, workforce shortages, and long waiting periods for home and community-based services. The underlying concern remains the same: whether disabled people will have access to the support they need to live safely and independently in their communities.
Kantor’s story may be unfolding in Kentucky, but the questions it raises extend far beyond one state. How many disabled people are spending their time fighting for services instead of living their lives? How many are forced to prove, over and over again, that their needs are real?
Disabled people should not have to earn dignity through endless paperwork. They should not have to demonstrate how much hardship they can endure before receiving help. Access to essential care should not be treated as a privilege that must constantly be justified.
For those of us who have watched needed support disappear, even temporarily, stories like Kantor’s are more than news stories. They are reminders of how quickly independence can become vulnerable when the systems designed to support it fall short. It is often the very thing that makes an independent life possible.
Sources:
Campbell, Kaitlin. “Medicaid Cuts Leave Louisville Woman without Aid over Half the Week.” WHAS11, 6 Oct. 2026, https://www.whas11.com/article/news/health/medicaid-cuts-leave-louisville-woman-without-aid-over-half-the-week/417-656b249e-ed6a-4ecd-9b38-6f3d0157b6db.
Ma, Nina S., et al. “Multicentric Carpotarsal Osteolysis: A Contemporary Perspective on the Unique Skeletal Phenotype.” Current Osteoporosis Reports, vol. 21, no. 1, Feb. 2023, pp. 85–94, https://doi.org/10.1007/s11914-022-00762-7.