Relative invisibility makes for uphill battle to get COVID vaccines for Americans with IDD

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• Judy Woodruff:

  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.

• William Brangham:

  One of Alan Cohen's favorite things to do each morning is taking a walk with his health aide, Salamatu Mansarray (ph).

• Woman:

  You're doing good, Alan.

• William Brangham:

  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?

• Alan Cohen:

  Two months.

• William Brangham:

  Two months?

• Alan Cohen:

  Yes.

• William Brangham:

  That's a long time.

• Alan Cohen:

  I'm better now.

• William Brangham:

  You certainly seem better.

• Alan Cohen:

  Yes.

• William Brangham:

  Was that scary being in the hospital?

• Alan Cohen:

  I didn't like it too much.

• David Ervin:

  The guy is a warrior. And it was touch and go.

• William Brangham:

  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.

• David Ervin:

  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…

• William Brangham:

  This is the portrait of a patient population.

• David Ervin:

  Yes.

• Scott Landes:

  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.

• William Brangham:

  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.

• Scott Landes:

  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.

• William Brangham:

  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.

• David Ervin:

  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…

• William Brangham:

  Right.

• David Ervin:

  … once we were identified as phase one priority, if you need me to call myself a nursing home, I'm a nursing home.

• William Brangham:

  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.

• Scott Landes:

  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.

• William Brangham:

  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.

• Scott Landes:

  And so there's this difficulty with understanding the trends within this population, simply because the data is not often available.

• William Brangham:

  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.

• Scott Landes:

  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.

• William Brangham:

  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.

• Carmen Houston-Ludlam:

  We also have dogs.

• Man:

  Dogs.

• William Brangham:

  Her parents call their daughter Joy Gifted, and Carmen lives a very active lifestyle, balancing work, sports, and now teaching online cooking classes.

• Ginger Houston-Ludlam:

  See that it's cut longways.

• William Brangham:

  But because she has Down syndrome, Carmen is far more susceptible to COVID-19, for reasons that still aren't well-understood.

• Carmen Houston-Ludlam:

  Because I am disabled, you can easily catch the coronavirus when someone who is disabled.

• Ginger Houston-Ludlam:

  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.

• Carmen Houston-Ludlam:

  Because I was very valuable?

• Ginger Houston-Ludlam:

  Absolutely. You're precious.

• Carmen Houston-Ludlam:

  Yes.

• Ginger Houston-Ludlam:

  That's right, super precious.

• William Brangham:

  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.

• Ginger Houston-Ludlam:

  They simply wouldn't put us on the waiting list.

• William Brangham:

  Did you call the county and say, hey, what's up?

• Ginger Houston-Ludlam:

  Many, many times. And I told them off.

• William Brangham:

  And did they give you an answer?

• Ginger Houston-Ludlam:

  No, they said, well, we haven't prioritized people. We're only doing it for people over 75.

• William Brangham:

  Even though the state is saying…

• Ginger Houston-Ludlam:

  Exactly.

• William Brangham:

  … Carmen belongs on this list.

• Ginger Houston-Ludlam:

  Absolutely.

• Carmen Houston-Ludlam:

  I know I'm not 75 or older, but it doesn't matter what the age is. I just wanted to get a vaccine.

• William Brangham:

  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.

• Ginger Houston-Ludlam:

  And we're going to make squares.

• William Brangham:

  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.

• Carmen Houston-Ludlam:

  I do ukulele. Ventriloquism, I show you.

• Ginger Houston-Ludlam:

  Snowboarding.

• Carmen Houston-Ludlam:

  Snowboarding, dancing, cheerleading, swimming.

• William Brangham:

  Oh, my gosh. It's like you're living the life of seven people all in one.

  (LAUGHTER)

• William Brangham:

  Meanwhile, back in silver spring, Alan Cohen, now fully vaccinated, is looking forward to baseball season and to seeing his family again.

• Alan Cohen:

  One day.

• Woman:

  Soon.

• Alan Cohen:

  Soon. Soon.

• Woman:

  Yes.

• Alan Cohen:

  Soon.

• William Brangham:

  For the "PBS NewsHour," I'm William Brangham in Silver Spring, Maryland.