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 two states that collect data. They also contract the virus at a higher rate, according to research looking into group homes across the United States.
In Pennsylvania, numbers obtained by NPR show that people with intellectual disabilities and autism who test positive for COVID-19 die at a rate about twice as high as other Pennsylvania residents who contract the illness.
In New York, the state with the most deaths from COVID-19, people with developmental disabilities die at a rate 2.5 times the rate of others who contract the virus.
The numbers in Pennsylvania are compiled by the Office of Developmental Programs of the Pennsylvania Department of Human Services and count people who get state services while living in group homes, state institutions or in their own homes. As of June 2, there were 801 confirmed cases and 113 deaths among people with intellectual disabilities and autism. In New York, NPR calculated data obtained from the New York State Office for People with Developmental Disabilities. Of people who get state services from that office, 2,289 have tested positive for COVID-19 and 368 have died.
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."
That's higher than the death rates for Hispanics and African Americans.
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're 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."
There has been a lot of attention to the deaths in nursing homes, and with good reason. About a third of all deaths nationwide from COVID-19 have been linked to them. According to the federal Centers for Medicare & Medicaid Services, there have been at least 31,782 deaths of nursing home residents from COVID-19 as of May 31. The CMS total does not count nursing home staff who died.
Still, says Nicole Jorwic, senior director for public policy at the Arc, a group that represents people with intellectual and developmental disabilities, there are consequences to paying less attention to people who live in other care home settings.
One result, she says, is 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.
"You don't go into a hospital and some doctors have on masks and some don't. Or some are underpaid and some are not," says Antonio McCall, a direct service provider who works with two men at a Philadelphia group home. "No, everyone gets what they're working for. Everyone's covered with protection, because that's what's required."
There have been no infections at the house where McCall works, but there have been some outbreaks of COVID-19 — and even a death — at others. He says his agency managed to find masks for him, and he has received some extra pay.
And McCall is careful. He doesn't want to bring an infection into the group home or his own home, where he helps care for his mother, who has an underlying health condition, and is raising his niece and nephew.
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.
McAlvanah says New York's Medicaid program, the main source of payment for group home providers, has failed to increase reimbursements even before the coronavirus pandemic. 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.
That's the case in most states, although Colorado and several others did increase Medicaid resources to providers. The CARES Act, the coronavirus relief act signed into law in March, became a source of extra funding, but only through the end of June.
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.
"For years and years and years, people we serve in group homes like this, they're the forgotten people," says Todd Goodwin, who runs John F. Murphy Homes, a large provider agency in Maine. "Nobody sees them. Nobody notices them. We see that repeatedly through policy, we see that in financing at the state and federal level. It's been an issue for years."
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 in an interview 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."
Fairweather says there have been no outbreaks of the coronavirus in the apartments where he lives. He's healthy and ready to return to his job as a janitor at the local library.
RACHEL MARTIN, HOST:
There's growing evidence of high rates of death from COVID-19 for a population that doesn't get a lot of attention - people with intellectual and developmental disabilities. An NPR analysis shows they contract COVID-19 at higher rates and they die at higher rates because of it. NPR investigative correspondent Joseph Shapiro reports.
JOSEPH SHAPIRO, BYLINE: The numbers from Pennsylvania are telling and grim. The state tracks COVID-19 among people with developmental disabilities who get services in group homes, in state institutions or in their own homes. These are mostly people with an intellectual disability or autism. Eight-hundred have been diagnosed with COVID-19, and 113 have died. NPR calculated the death rate for everyone in Pennsylvania who's tested positive for COVID-19. People with intellectual disabilities and autism are dying at a rate nearly two times higher.
SCOTT LANDES: It's disturbing, but it's not surprising.
SHAPIRO: That's Scott Landes. He's a professor at Syracuse University, and he's finding the same high numbers in other states. He's been collecting national data from states and from private research companies. Landes says people with developmental disabilities who live in group homes have some of the highest death rates in the country from COVID-19 - higher than the death rates for Hispanics, higher than the death rates for African Americans.
LANDES: For those individuals who are living in residential group homes are more likely - four times more likely, we're showing - to actually contract COVID-19 than the general population. And then when they do contract COVID-19, what we're seeing in our data is that they're about two times more likely to die from it.
SHAPIRO: Landes says there are two reasons for the high death rates - people with developmental disabilities are far more likely to have a health condition that adds to their risk, like respiratory disease. Plus, they're much more likely than even elderly people to live in a setting with roommates and staff, in group homes where two or four or 10 or more people live together.
LANDES: You reside with multiple roommates, with staff coming in and out. Your chances of actually contracting COVID-19 are high. And then if someone in your home gets it, it's like - there's nowhere you're going to be able to go. You're not going to be able to isolate that person.
SHAPIRO: There's been a lot of attention to the deaths in nursing homes with good reason. About a third of all deaths nationwide from COVID-19 have been linked to nursing homes. But Nicole Jorwic of The Arc, a group that represents people with intellectual and developmental disabilities, says...
NICOLE JORWIC: It's so frustrating that as all this attention is being paid to nursing home settings, that the same attention isn't being paid to all settings where people with disabilities are being served.
SHAPIRO: She notes when outbreaks in nursing homes started to get attention, workers there got more personal protective equipment and sometimes extra pay. Some states don't even designate people who work in group homes as essential health care workers. And the agencies that serve people with disabilities report they've had a harder time finding enough masks or more pay for staff workers.
JORWIC: And that also will come at the expense of lives lost and people getting sick who simply don't need to get sick.
SHAPIRO: In Washington state, there was a Zoom meeting the other week of men and women with developmental disabilities who belong to an advocacy group called People First of Washington.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PERSON #1: Here at our house, my husband and my caregiver have been going out because I'm kind of high risk.
UNIDENTIFIED PERSON #2: So yes, I have had a family member - she caught the COVID-19. But she did not pass it to any of my family, so everything is well.
SHANE CODY FAIRWEATHER: In our group home, they're not allowing us to go out to shop.
SHAPIRO: That last speaker is Shane Cody Fairweather. He lives in eastern Washington in a supported living apartment complex for 19 people with disabilities.
FAIRWEATHER: We're part of society. We're more vulnerable. And so is the elderly, though, you know, in nursing homes. It should be on equal footing. You know? They should paying attention to the elderly and the disabled as well.
SHAPIRO: Fairweather says there have been no outbreaks of coronavirus where he lives. He's ready to return to his job as a janitor at the local library.
The federal government now requires every nursing home to report outbreaks and deaths. And last week, it started making those reports public. But places where people with developmental disabilities live do not get that kind of reporting.
Joseph Shapiro, NPR News. Transcript provided by NPR, Copyright NPR.