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.
