By Alice Doyel
Guest blogger


Alice Doyel, education advocate

This blog post is taken from a written and spoken article from NPR on June 9, 2020. Read the full transcript.

My Personal Statement: Having advocated for the rights of people with disabilities for a decade before moving to Seattle, this article tore at my heart on top of everything else that is heart-breaking these days. These current deaths are a stark warning for those of our currently school-aged children when a future pandemic hits our country. We need to act now! We need to act for those who are dying now. We need to act for the future of our children with intellectual disabilities and autism.

People with intellectual disabilities and autism who contract COVID-19 die at higher rates than the rest of the population, according to an analysis by NPR of numbers obtained from New York State and Pennsylvania. NPR’s figures show the rate twice as high for dying from COVID-19 as the general population in Pennsylvania and 2.5 times as high in New York. They also contract the virus at a higher rate, according to research looking into group homes across the United States.

The high rate of death “is disturbing, but it’s not surprising,” says Scott Landes, an associate professor of sociology at Syracuse University’s Maxwell School of Citizenship and Public Affairs. He’s been collecting his own data from state and private research groups and says people with developmental disabilities who live in group homes have some of the highest death rates from COVID-19 in the country. “They’re more likely — four times more likely, we’re showing — to actually contract COVID-19 than the general population,” he says. “And then if they do contract COVID-19, what we’re seeing is they’re about two times more likely to die from it.” Landes co-authored a recent study that used private health records to show that 18- to 74-year-olds with developmental disabilities, mostly those diagnosed with autism, who contracted COVID-19 died at nearly twice the rate as others.

Landes says there are two reasons for the high death rates. People with developmental disabilities are far more likely to have a preexisting health condition, such as respiratory disease, that adds to their risk. They are much more likely, than even elderly people, to live in a setting with roommates and staff like group homes where two or four or 10 or more people live together. About 13% to 20% of people with developmental disabilities live in such settings, Landes notes, compared with only about 6% of people over age 65.

“You reside with multiple roommates, with staff coming in and out,” says Landes, “your chances of actually contracting COVID are high. And then if someone in your home gets it, it’s like there’s nowhere you can go.”

Nicole Jorwic, senior director for public policy at The ARC, says that it has been harder for the groups that serve people with disabilities to get personal protective equipment or extra pay for staff workers. In most states, these workers don’t get the bonus pay that is sometimes offered to other front-line health care workers and, in some states, the staff who serve people in group homes or their own homes aren’t considered essential workers.

In New York, a direct service professional working in a group home makes little money — “at or below the poverty line,” in the mid $20,000s a year, says Tom McAlvanah, president of New York Disability Advocates, a coalition of service providers. He says it has been hard to keep workers healthy and on the job. They’re vulnerable not only because of where they work, but because they often rely on public transportation. Now, he says, group home residents have stopped going to work, and group home providers have had to pay staff — without government reimbursement — to work more hours and overtime to run the group homes where residents now spend their full days.

Provider agencies say that, on average, they’ve spent a third of their annual revenue on unexpected costs from the pandemic and have cash reserves to cover a month or less of operations, according to a recent national survey by the American Network of Community Options and Resources, a trade association for groups that provide services to people with disabilities.

In Washington state, there was a Zoom meeting last month of men and women with developmental disabilities who belong to an advocacy group called People First of Washington. They spoke of their opposition to state budget cuts that, they worried, would cut off public transportation that they depend on to get to work or cut the hours of their state-funded caregivers. And they were worried about the effects of the coronavirus.

Shane Cody Fairweather, who lives in his own apartment in Chewelah, Wash., with support from service providers, said that he worries that people like him are not getting attention, despite their risks for contracting COVID-19. “We’re part of society. We’re more vulnerable,” he says. “It should be on equal footing. They should be paying attention to the elderly and the disabled as well.”