Member-only story
When the Government Screws Up, We Pay the Price
My eight-month battle with the Department of Health and Human Services.
Being disabled in the U.S. is expensive. I don’t think I’m blowing any minds with this statement, but most people underestimate just how much it costs to live as a disabled person. Between monthly medical supplies, equipment, and over a dozen medications, keeping me alive can rack up a pretty hefty bill.
Health insurance helps with some of these costs, but disabled people often still can’t afford the out-of-pocket costs of their care. To remedy this, many disabled people get secondary health insurance via Medicaid. Designed to cover expenses insurance doesn’t, Medicaid can be vital to the quality of life — and survival — of disabled people.
Shortly after I was born, my parents put me on a waiting list for a Medicaid waiver program — a unique form of Medicaid that determined eligibility based solely on my income, not the household income. At eight years old, I finally got on the program. Since then, they’ve paid for my medical supplies, home equipment, and wheelchair. It’s far from perfect, but it’s allowed me to get vital equipment I never could’ve afforded otherwise.
Until last September…
