Category: Uncategorized

CW: Filicide & Death For a parent of a child with an intellectual or developmental disability (IDD), there have probably been moments where they have wondered: What will happen to my child when I’m gone? Members of Ireland’s parliament were recently discussing the reality faced by aging parents of adults with IDD. Independent TD Seamus… Continue reading Who Will Care for Them?

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… Continue reading We Already Proved It

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. Sadly, it was a reminder of how fragile independence can be. I spent almost two months fighting… Continue reading When Care Becomes a Question

For many people, Medicaid might not seem very political. They might think of it as healthcare coverage for low-income Americans. For many disabled people, Medicaid is far more than a government program. It pays for the services that make it possible to live in the community rather than in an institution. That’s why advocates are… Continue reading What Happens When Medicaid Gets Disability Wrong?

CW: Pain Yesterday I saw a Facebook post from a mother whose son has cerebral palsy. Her son is currently recovering from major surgery. Her son often apologizes for needing help. At his school, they call it “Eeoryeing.” As someone who has cerebral palsy, I knew the feeling she was talking about right away.  My… Continue reading The Eeorye Phenomenon 

CW: Medical Care & Institutional Bias Nicholas Papadopoulos spent 10 years in a nursing home in Georgia. He has cerebral palsy. He was living on his own before he developed cellulitis. What was supposed to be a short stay turned into a decade in the facility. He left earlier this year. His newfound sense of… Continue reading The Everyday Freedom Olmstead Protects 

CW: Poverty Social Security benefits are projected to increase next year. Current estimates indicate that people who receive Social Security may see their benefits increase by around 2.8%. For Americans who live on a fixed income, any increase is a good thing. But for many disabled people this news brings up a question: what happens… Continue reading A Bigger Social Security Check Won’t Change The High Cost Of Disability

CW: Elopement, Drowning, & Death When three-year-old Noah Woods disappeared from a playground in Suffolk, England, thousands of people joined the search. Noah, who was autistic, non-verbal, and partially deaf, had become separated from a relative. A day later, the search ended in tragedy when the boy was found deceased. For most people, the story… Continue reading A Child Lost, and a Community Searching for Answers

CW: Cancer At the age of ten, Taya Hailstone was diagnosed with cancer. Taya Hailstone survived Hodgkin lymphoma. The treatments that saved her life left lasting damage. At 19, she still lives with health problems. Despite her ongoing health problems, she has to prove that she is still a disabled person who qualifies for the… Continue reading Disabled People Don’t Need More Paperwork, We Need Support 

CW: Suicide, Mental Health, & MAID September is Suicide Prevention Month, a time to raise awareness and show compassion. Recently, in Edmonton, Alberta, that awareness felt very real. Families and supporters gathered around a wheelchair with a sign that said, “One disabled life lost, one too many.” This wasn’t just a saying; it was a… Continue reading What Suicide Prevention Really Means for Disabled People