Kelli Stuart’s 11-year-old son Sawyer has autism and a genetic disorder. His family converted a trampoline into a bed in order to keep him safe.
For the last year and a half, Stuart has been trying to get Medicaid to approve an enclosed safety bed. Five different doctors have written letters of medical necessity for the bed. Unfortunately, Medicaid keeps denying it.
What should have been a straightforward request has been a battle. For months, Stuart gathered documentation, filed appeals, and tried to convince Medicaid that her son deserved a safe place to sleep. She is still fighting for the bed. The story hit close to home because I know what it feels like when Medicaid does not cover something you need to remain safe.
Earlier this year, MassHealth took away my overnight personal care assistant (PCA) hours. From an administrative perspective, it may have looked like a routine adjustment. In reality, it put my health and safety at risk. I spent months gathering medical records, requesting documentation from providers, writing letters, and making phone calls to prove that the support I rely on is not optional. There is something profoundly exhausting about having to justify the care that allows you to sleep safely through the night. There is also something deeply frustrating about being forced to convince a system that your well-being is worth protecting.
Disabled people and their families often find themselves trapped in a cycle that feels impossible to escape. Physicians document a need, specialists submit supporting letters, therapists provide evaluations, and people carefully assemble appeals, believing that enough evidence will finally mean they get the support they need.Too often, they are told that the evidence is insufficient, leaving them to start the process all over again.
These situations are heartbreaking. Sawyer’s family is not looking for a convenience or a luxury. They converted a trampoline into a bed because they were trying to keep their son safe.
These same fights take place worldwide. In England, Victoria and Christopher are raising their seven-year-old son, Kian, who has lissencephaly, a rare neurological condition that affects brain development. Although the NHS (National Health Service) provided a wheelchair, his parents say it does not adequately support his posture, protect him during seizures, or accommodate the medical equipment he depends on each day.
Christopher described supporting Kian’s head himself and worrying about his son’s safety and comfort. Their circumstances are different from Sawyer’s. However, the underlying problem is familiar.
Whether the issue is a safety bed in Florida, overnight PCA services in Massachusetts, or a properly fitted wheelchair in England, disabled people and their families are routinely required to fight for equipment and services. The systems may operate under different rules and different names, but the experience remains similar.
Disabled people and their families should not have to become experts in bureaucracy to get the support they need. The ability to navigate a complex system should never determine whether someone can sleep safely, remain healthy, or avoid injury.
No family should have to turn a trampoline into a bed to keep a child safe. No father should have to worry that a wheelchair cannot adequately protect his son. And no one should have to spend months or years proving that medically necessary care is actually necessary.
Sources:
Paluska, Michael. “Tampa Bay Mom Says Medicaid Denied Her Son’s Safety Bed Again after 18 Months of Appeals.” Tampa Bay 28 22 Sept. 2026, https://www.tampabay28.com/news/local-news/tampa-bay-mom-says-medicaid-denied-her-sons-safety-bed-again-after-18-months-of-appeals.
Stubbs, Charlie. “We Fight for Everything to Help Our Disabled Son.” BBC News, 6 Aug. 2026. https://www.bbc.com/news/articles/cp3rx2wllq3o