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Correction: This piece reported that only nine states and the District of Columbia report COVID-19 outcomes specifically for those with intellectual and developmental disabilities to the federal government. In fact, these states and D.C. are the only jurisdictions to report this data publicly. It’s unclear which states, if any, report this information directly to the federal government.
People with intellectual and developmental disabilities like Down Syndrome, Cerebral Palsy and Autism often have underlying health conditions that make them more susceptible to COVID-19. Plus, many receive care in group living facilities, putting them at further risk. But despite the elevated risks for those with IDD, they face an uphill vaccination battle. William Brangham reports.
There have been more than 30 million known COVID-19 infections across this country.
As William Brangham reports, there is one particular group at increased risk of the virus, those with intellectual and developmental disabilities.
One of Alan Cohen's favorite things to do each morning is taking a walk with his health aide, Salamatu Mansarray (ph).
You're doing good, Alan.
The 62-year-old lives in Silver Spring, Maryland, with three others in a house run by the Jewish Foundation for Group Homes. It's a nonprofit that provides assisted living for those with intellectual and developmental disabilities, or IDD.
Last year, Cohen was one of 15 people who are served by the foundation who contracted COVID-19, and one of three hospitalized.
Do you know, like, how long you were in the hospital?
That's a long time.
I'm better now.
You certainly seem better.
Was that scary being in the hospital?
I didn't like it too much.
The guy is a warrior. And it was touch and go.
David Ervin is head of the Jewish Foundation for Group Homes. It serves around 180 adults with IDD in Maryland and Virginia.
Last year, when the virus emerged, Ervin remembers looking at the risk factors and being very concerned about the people they serve.
So the CDC comes out sort of early-ish with a list of conditions that don't combine well with COVID-19 and drive much more severe outcomes. And we're looking at the list and we're thinking, oh, my gosh, this is so…
This is the portrait of a patient population.
What we're finding is across the board, no matter the type of intellectual developmental or disability, there's increased risk of COVID-19 severity.
Scott Landes is a sociologist at Syracuse University who for years has studied health outcomes for those in the IDD community. He says people with IDD, conditions like Down syndrome, cerebral palsy, Rett syndrome and autism, often have underlying health conditions that make them more susceptible to COVID-19.
And that, combined with the fact that many receive care in group living facilities, in close contact with caretakers, puts them at greater risk than the general population.
Their case fatality rate, we're finding, is about 1.5 times higher than what we're seeing in the general population.
For people living in these congregate settings, like this residential group home, we're seeing that the case fatality rate is about three times higher than the general population.
Despite the elevated risks for those with IDD, when it came to vaccinating residents and caretakers, David Ervin says it was an uphill battle, first to get prioritized by the states where they operate, and then to actually get shots into arms.
Ultimately, when we were finally contacted by first Walgreens and subsequently CVS, neither were quite sure what to do with us. Community living supports? Are you a nursing home? Yes.
If that's what it takes…
… once we were identified as phase one priority, if you need me to call myself a nursing home, I'm a nursing home.
Across the country, every state included nursing homes in their phase one vaccine rollouts. But only 31 states and the District of Columbia specifically included people with IDD in their highest priority groups.
It's not been surprising, on one hand, that states have not prioritized this group, because that's historically been the case. It's been disappointing, because the evidence was there pre-pandemic and the evidence is there now that this group is at higher risk.
Scott Landes says that even goes to the data collection itself.
As of January, he says only nine states and the District of Columbia even reported data on COVID-19 outcomes for those specifically with IDD to the federal government, despite the fact that all states receive federal funding for their care.
And so there's this difficulty with understanding the trends within this population, simply because the data is not often available.
It seems that their, for lack of a better word, relative invisibility in our society and even in federal data sets has only exacerbated the problems now that the pandemic is upon us.
Yes, and that's a great word, invisibility.
And it's — I think a lot of it relates to whether we do or do not value the lives of people with intellectual and developmental disability.
Last October, Senators Elizabeth Warren, Maggie Hassan, and Patty Murray asked the head of the Centers for Medicare and Medicaid to require that all states report COVID data on those with IDD living in congregate care, as they had already done with nursing homes. The center has yet to respond to that request.
While many with IDD live in these group care settings, the majority live with their families; 23-year-old Carmen Houston-Ludlam lives on a beautiful farm in Eastern Maryland, surrounded by emus, turkeys, rabbits.
We also have dogs.
Her parents call their daughter Joy Gifted, and Carmen lives a very active lifestyle, balancing work, sports, and now teaching online cooking classes.
See that it's cut longways.
But because she has Down syndrome, Carmen is far more susceptible to COVID-19, for reasons that still aren't well-understood.
Because I am disabled, you can easily catch the coronavirus when someone who is disabled.
Well, that in Down syndrome, that people's immune response is different, and it's not quite as strong as other people. And so you were very susceptible to getting the coronavirus. And so that's why we had to be super careful about it.
Because I was very valuable?
Absolutely. You're precious.
That's right, super precious.
Recognizing her elevated risk and need for a vaccine, the state of Maryland prioritized Carmen and those like her in Category 1-B, along with people over 75.
But, again, when it came to actually giving her the shot, there were barriers. In this case, her mom Ginger says the local health department balked.
They simply wouldn't put us on the waiting list.
Did you call the county and say, hey, what's up?
Many, many times. And I told them off.
And did they give you an answer?
No, they said, well, we haven't prioritized people. We're only doing it for people over 75.
Even though the state is saying…
… Carmen belongs on this list.
I know I'm not 75 or older, but it doesn't matter what the age is. I just wanted to get a vaccine.
With the help of an IDD nonprofit called the Arc Maryland, Carmen and her parents eventually got vaccinated six weeks after they first became eligible under the state guidelines.
And we're going to make squares.
Ginger's now helping others in their same situation get vaccinated, and looking forward to the day when Carmen can return to her many pursuits.
I do ukulele. Ventriloquism, I show you.
Snowboarding, dancing, cheerleading, swimming.
Oh, my gosh. It's like you're living the life of seven people all in one.
Meanwhile, back in silver spring, Alan Cohen, now fully vaccinated, is looking forward to baseball season and to seeing his family again.
For the "PBS NewsHour," I'm William Brangham in Silver Spring, Maryland.
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William Brangham is a correspondent and producer for PBS NewsHour in Washington, D.C. He joined the flagship PBS program in 2015, after spending two years with PBS NewsHour Weekend in New York City.
Frank Carlson is a general assignment producer at the PBS NewsHour, where he's been making video since 2010. @frankncarlson
Deema Zein is an associate producer of digital video. She produces and hosts PBS Newshour's new digital series Five Stories.
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