The Price of Getting Help When You Can’t Wait
CW: Medical Emergencies On an ordinary July afternoon, Stephanie Rowell was standing on her parents’ front porch when a wasp stung her left arm. At first, there was the burning sensation she might have expected from a sting. Then her whole body began to itch. Her face swelled and turned red, and her throat felt…
The Care Doesn’t Disappear When the Paycheck Does
CW: Fraud When Idaho stopped paying Challis Hopwood for the care she provided for her disabled son, Leon, he still woke up needing the same care. The mortgage still had to be paid, the car needed gas, and there were therapy appointments to get to. What disappeared was the financial cushion that had helped her…
Caught in the Crackdown: Disability and the Fight Against Medicaid Fraud
CW: Fraud There is something unsettling about the national conversation around Medicaid. We hear constantly about people who should not be getting something: providers submitting fraudulent bills, companies collecting money for care they never delivered. People are exploiting a program meant for those who need it. There is another reality. Disabled people cannot find caregivers. …
Prayer Cannot Fill an Empty Shift
CW: Injury Yesterday I watched a video about Garet Frey, who is a quadriplegic. He was injured shortly before his fifth birthday. Medicaid allows him to live at home with his mother in Iowa. He has caregivers overnight, but sometimes no one is available. Because of budget cuts, Frey is worried about whether or not…
When the Chatbot Became Her Confidant
CW: Suicide, Epilepsy, & Death Qun Wan was worried about his 31-year-old daughter, Bowen Wan. Wan told her father that she had been tapering off her seizure medication, taking only a quarter of her prescribed dose. She said the medication caused her speech to sound stilted and impaired her cognition. Suddenly, they were in the…
The Cruel Math of Saving While Disabled
CW: Poverty Julia Feinberg lives with spinal muscular atrophy. She works as a therapist in Oakland, California and relies on Medi-Cal to pay for in-home care 19 hours a day. After a decade of expansion, California is cutting Medi-Cal as part of broad federal and state cuts that experts estimate will remove coverage from more…
The Boys in the Science Club
CW: Abuse When Fred Boyce joined the Science Club at Fernald State School in Massachusetts in 1949, he wasn’t thinking much about science. There were all kinds of other perks. The boys could go to RedSox games and receive gifts including Mickey Mouse watches. The boys relished the attention and gifts. There were breakfasts too,…
Bring Your Own Lift?
Yesterday I read a Facebook post by a mother who took her disabled son to the emergency room. Her son needed a chest X-ray. For a nondisabled person, an X-ray is a relatively simple procedure. However, her son uses a wheelchair and has complex medical needs. There was no lift available to transfer him safely.…
Disabled Students Are Fighting Just to Learn
It takes Romi Loffler 30 minutes to write a single sentence. Using her eyes, she says what she is thinking, letter by letter, on a screen. Romi, 21, from Scotland, has a genetic condition called Rett syndrome which leaves her unable to walk or speak. Rett syndrome is a genetic disorder that primarily affects girls…
Being Known Is Its Own Kind of Care
CW: Pet Loss I have been surrounded by therapists, paraprofessionals, teachers, and doctors for most of my life. Many of them have been wonderful, and some have known me for years. They have listened to me, laughed with me, celebrated with me, and have gotten to know me. I think about my physical therapist. Our…
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