As the media report on American nursing homes plagued by COVID-19, one important fact has been largely ignored or underplayed: Not all residents are elderly. Thousands are adults under the age of 65 who have physical and/or intellectual disabilities.
In late April, the Kaiser Family Foundation reported more than 10,000 reported deaths from COVID-19 in long-term care facilities in just the 23 states that publicly report this information. Missing was the number of residents under 65 with disabilities who were among the dead.
An underlying question is why people with disabilities are living in nursing homes, assisted living facilities and state hospitals. Before this health crisis, they faced waiting lists to get support in their own homes and struggled to access government benefits. As Time Magazine reported, “But amid a global pandemic, those challenges are heightened—and so far, lawmakers have mostly ignored their calls for help,” such as increasing Medicaid funding for at-home care.
“We have an institutional bias in this country,” Kelly Buckland, executive director of the National Council on Independent Living, told the Los Angeles Times. “The bias is that if you become disabled or old, you need to go someplace else. You need to go to an institution.”
A breeding ground for COVID-19 is the last place anyone wants to be, but why so many people with intellectual and physical disabilities have little or no choice in the matter is a critical story for this moment in history.
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By Susan LoTempio, board member, National Center on Disability and Journalism