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People with intellectual disabilities often overlooked in pandemic response

The following is an excerpt from an article written by Katheryn Houghton from Kaiser Health News (not affiliated with Kaiser Permanente) and published on the NPR website.

Early studies have shown that people with intellectual and developmental disabilities have a higher likelihood of dying from the virus than those without disabilities, likely because of a higher prevalence of preexisting conditions. While some high-profile outbreaks made the news, a lack of federal tracking means the population remains largely overlooked amid the pandemic.

No one knows how many of the disabled individuals who live in (assisted or community-based) facilities nationwide have caught COVID-19 or died as a result. That creates a blind spot in understanding the impact of the virus. And because data drives access to scarce COVID-19 vaccines, those with disabilities could be at a disadvantage for getting prioritized for the shots to keep them safe.

While facilities ranging from state institutions that serve hundreds to small group homes with a few people have been locked down throughout the pandemic, workers still rotate through every day. Residents live in close quarters. Some don't understand the dangers of the virus. Those who need help eating or changing can't keep their distance from others. Many facilities also have struggled to keep enough masks and staffers on hand.

The Consortium for Citizens with Disabilities has repeatedly asked federal agencies to hold facilities where people with disabilities live to the same pandemic rules as nursing homes, which must report COVID-19 cases directly to national agencies.

Nicole Jorwic, senior director of public policy with The Arc of the United States, a nonprofit that serves people with disabilities, said a spotlight on nursing homes makes sense. Those homes have seen more than 121,000 deaths due to the pandemic. But it's unclear what the toll is at the facilities focused on those who have disabilities.

"How do we know how big the problem is if we're not capturing it?" she asks.

Greg Myers, a Centers for Medicare & Medicaid Services press officer, said in an email that states, not federal officials, manage Medicaid-funded intermediate care facilities and group homes for people with developmental disabilities. He said many of those facilities serve fewer than eight residents and don't "pose the same concerns as larger congregate settings."

Some states are tracking the caseloads, though Jorwic says the type of information they collect varies. New York state data revealed disability group home residents there are dying at higher rates than the general population. In Illinois — which called on the National Guard to respond to outbreaks in two of the state's largest developmental centers in April — more than half of the 1,648 residents in state-run developmental facilities have had the virus.

Still, cases are flying under the radar. When the Associated Press did a national survey in June of how many people in such housing have fallen sick or died of COVID-19, about a dozen states didn't respond or release comprehensive data.

"The delay or complete lack of access to this data comes with a body count," Jorwic says. "You're not acknowledging that these settings are just as dangerous as other settings, like nursing homes."

Centers for Disease Control and Prevention guidelines recommend that states prioritize long-term care facilities early in the vaccine rollout, but few states specified that people with disabilities who live in group homes should be candidates for that initial vaccine distribution.

New York is one of the few that did specifically include certified-group facilities, and this month opened access to all people with intellectual or developmental disabilities. "New York state has the actual data to help show the horrors of COVID," says Dr. Vincent Siasoco, a primary care physician in New York City who focuses on patients with developmental disabilities.

Instead, many states are setting priorities based on a list of high-risk medical conditions outlined by the CDC, which in December added Down syndrome to the list. "More studies have to be done. Data has to be shared," Siasoco says.

Read the article in its entirety here.

Help take action to change the way individuals are prioritized during the pandemic. Learn more here.

Sources: Kaiser Health News, NPR

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