President Joe Biden’s remarks on “60 Minutes” Sunday that “the pandemic is over” must have demoralized people with disabilities who had already experienced the awful sight of their fellow Americans gleefully celebrating no longer having to wear masks on airplanes. It feels like the work that people with disabilities did to make themselves heard before and during the pandemic was all for naught and that none of the conditions that led to the pandemic disproportionately killing disabled Americans has or will fundamentally change.
It feels like the work that people with disabilities did was all for naught.
According to the Centers for Disease Control and Prevention, on the day the “60 Minutes” interview aired, the seven-day moving average for deaths from Covid-19 clocked in at 377. As of Friday, the NBC News Covid data dashboard was reporting 469 daily deaths, an average that was 18% higher than the average taken two weeks before.
Many Americans desperately want to move on from the pandemic, which is understandable; it led to more than 1 million Americans dying, many more losing their jobs or having their lives fundamentally altered in some way or another. But the disability community, which suffered a disproportionate number of deaths, still faces disproportionate danger. An October 2021 report from the National Council on Disability found that between the start of the pandemic in the U.S. and March 2021, a full third of Covid-19 deaths occurred in facilities that accommodated not just senior citizens but also people with disabilities between the ages of 31 and 64, and on top of that, they were often triaged out of Covid-19 treatments when hospital beds, supplies and personnel were scarce.
Another study conducted before vaccines were available found that people with developmental disorders were 3.06 times more likely to die from Covid-19, while people with intellectual disabilities were 2.75 times more likely to die, and people with spina bifida and other nervous system anomalies were 2.48 times more likely to die.
Before Biden declared the pandemic over, his administration had already been moving in the direction of describing the fight against Covid-19 as a matter of personal responsibility and not as a national crisis that requires marshaling every public resource available.
Similarly, the administration has shown how easily it is willing to view people with disabilities as pesky asterisks. In a January appearance on Good Morning America, Rochelle Walensky, director of the CDC, infamously cited a study that found that of the 36 deaths recorded in 1.2 million fully vaccinated people, 28 people had four or more risk factors, and she said, “So really, these are people who were unwell to begin with. And yes, really encouraging news in the context of omicron.”
That is an unconscionable way to wave off people who are severely immunocompromised or ill. As Jayne Mattingly wrote for NBC Think, 78% of people with risk factors died. That was not an incredibly encouraging number. Eventually, Walensky was forced to apologize to disability rights activists, but since then, people with disabilities have felt that the CDC hasn’t done much to change course. When the CDC loosened its Covid-19 guidance in April, Maria Town, the president of the American Association of People with Disabilities, said it would lead to death as well as “sickness and further disablement.”
“The CDC issued this loosened COVID guidance after the Senate chose NOT to make historic investments in home and community based services, paid family and medical leave, and childcare – all things that would help mitigate the effects of ‘living with the virus,’” Town tweeted last month.
It’s equally upsetting that none of the federal policies that could mitigate deaths of people with disabilities has actually changed. Last year, Biden laid out a plan to spend $400 billion in home and community-based services for elderly people and people with disabilities.
People with disabilities had disproportionately died of Covid-19 died in congregate care settings as Democratic governors such as California’s Gavin Newsom, New Jersey’s Phil Murphy and New York’s Andrew Cuomo required long-term care facilities and skilled nursing facilities to take Covid-19 patients. So more funding for home and community-based services should have been easy pickings for Biden’s party.
Medicaid Home and Community-based services or HCBS has always been chronically underfunded, which means staff turnover is anywhere from 40% to 60% annually, much higher than other parts of the health care and social assistance sector. The waitlist to get home care is impossibly long in some states, with some people waiting for years, which often forces people to make a painful decision between living in nursing homes or living without the proper support systems or staff to survive to have some modicum of relief. People’s fears about their loved ones dying of Covid-19 in a nursing home illuminated what people with disabilities already know: Nursing homes can be incredibly perilous and are far less preferable to receiving care at home.
But during the deliberations for Build Back Better, Democrats slashed the $400 million home and community-based services to $190 billion. Then, in an attempt to keep the price tag low and appease Sen. Joe Manchin, D– W.Va., they further slashed it to $150 million, only to see Manchin nuke the legislation altogether. When Democrats passed their pared-down reconciliation this year, it included nothing for home and community-based services.
Instead, those political moments have passed. With the Inflation Reduction Act passed and signed, there will likely be little appetite for more spending, and the president declaring the pandemic over means that the need for more home care and nursing homes won’t get as much attention.
All of this can be incredibly demoralizing. The 2020 Democratic primary featured a variety of candidates ranging from mainstream Democrats such as Pete Buttigieg to progressive Democrat Sen. Elizabeth Warren of Massachusetts to the independent, democratic socialist Sen. Bernie Sanders of Vermont releasing comprehensive disability policies — and it felt like disabled Americans were finally being heard as a constituency. (Biden didn’t release a disability plan until after he won the Democratic nomination for president.) Now, with him declaring the pandemic over, people with disabilities are left wondering when the next opportunities will arise to change the systems that are supposed to support them but too often leave them vulnerable to harm.
Presidents’ words have the ability to marshal people into action and the ability to cause them to stand down. Biden declaring the pandemic over helps kill the urgency to fight for a better world for people with disabilities and effectively triaging them out in the name of political expediency.