Lack of Covid data on people with intellectual disabilities “comes with a body count”

Peter Prater’s family weren’t thinking about covid-19 when the call came that he had been taken to hospital with a fever.

It was April and the Tallahassee Development Center, where Prater lives, had not yet been diagnosed with covid. Prater, 55, with Down syndrome and diabetes, became the first known case in central Florida, his family said. In two weeks, more than half of the roughly 60 residents and a third of the staff had tested positive for the virus, according to local reports.

“We thought we were going to lose him,” said Jim DeBeaugrine, Prater’s brother-in-law, who also works as a disability advocate. “We weren’t yet aware of a correlation with Down syndrome and poor outcomes with covid. He’s just a frail person, period.

Peter Prater smiles for a photo before the pandemic. Prater survived a case of covid-19 that was part of an outbreak at the Tallahassee Development Center in April. No federal agency tracks how many of the estimated 300,000 people who live in such facilities nationwide either caught covid or died as a result. (Susan Prater-DeBeaugrine)

Prater survived after about seven weeks in the hospital. Corn five more center – three residents and two staff – died. The center is working to follow federal and state guidelines in the event of a pandemic, said Camille Lukow, regional director of the Mentor Network, which began operating the facility in December.

Early studies have shown that people with intellectual and developmental disabilities have a higher probability of dying of the virus than people without disabilities, possibly due to a higher prevalence of pre-existing conditions. While some high-profile outbreaks have made the news, a lack of federal follow-up means the population remains largely ignored amid the pandemic.

No one knows how many estimates 300,000 people who live in such facilities nationwide have caught or died from the covid. This creates a blind spot in understanding the impact of the virus. And because data provides access to scarce covid vaccines, people with disabilities might be at a disadvantage to be prioritized for vaccines to protect them.

While facilities ranging from public institutions that serve hundreds of homes to small group homes with a few people have been locked down throughout the pandemic, workers are still rotating every day. The inhabitants live in the immediate vicinity. Some do not understand the dangers of the virus. Those who need help with eating or changing cannot keep their distance from others. Many facilities also struggled to keep enough masks and personnel on hand.

The Consortium for Disabled Citizens has repeatedly asked Federal agencies to detain facilities where people with disabilities live under the same pandemic rules as nursing homes, which must report cases of covid directly to national agencies.

Nicole Jorwic, senior director of public policy at The Arc of the United States, a nonprofit serving people with disabilities, said it made sense to shine a light on nursing homes. These houses have seen more than 121,000 deaths due to the pandemic. But it’s unclear what the toll is in facilities geared toward people with disabilities.

“How do we know how important the problem is if we don’t catch it?” ” she asked.

Greg Myers, a press secretary with the Centers for Medicare & Medicaid Services, said in an email that states, not federal officials, manage Medicaid-funded intermediate care facilities and group homes for people with intellectual disability. He said many of these facilities serve fewer than eight residents and do not “pose the same concerns as large assembly centers.”

Some states are tracking the number of cases, although Jorwic said the type of information they collect varies. Data from New York State revealed that residents of group homes for the disabled are dying in higher rates than the general population. In Illinois – who calls in the national guard to respond to outbreaks in two of the state’s largest development centers in April – more than half of 1,648 residents in state-run development establishments have had the virus.

Still, cases are flying under the radar. When The Associated Press did a nationwide survey in June on how many people in such homes have fallen ill or died from covid, a dozen states have not responded or released full data.

“The delay or complete lack of access to this data comes with a body count,” Jorwic said. “You don’t recognize that these settings are just as dangerous as other settings, like nursing homes.”

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

New York is one of the few to specifically include certified group facilities and this month opened access to all people with intellectual or developmental disabilities.

“New York State has the real data to help show the horrors of covid,” said Dr. Vincent siasoco, a primary care physician in New York City who focuses on patients with developmental disabilities.

Instead, many states set priorities on the basis of a list of high risk medical conditions described by the CDC, which in December added Down syndrome to the list.

Siasoco, a board member for the American Academy of Developmental Medicine and Dentistry, said it was likely missed by people with medical risks not yet reflected in the data, such as someone living in a group home with paralysis. brain that gets food through a tube and cannot speak.

“We need to do more studies. Data must be shared, ”Siasoco said.

In the meantime, the academy said diagnoses of intellectual and developmental disabilities should be explicitly included in the list of high-risk conditions used to prioritize vaccines, and facilities for people with disabilities should have access at the same time as nursing homes – although, Siasoco admitted, there is a long line of people advocating for priority and not enough vaccines for everyone.

In Montana, people living in groups, including housing for people with disabilities, were initially in the phase just behind healthcare workers and nursing home residents on the vaccine list. But the new governor, Republican Greg Gianforte, has instead prioritized anyone 70 and over and those with health conditions, in order to protect the most vulnerable. The change nearly tripled the number of people eligible for this phase of the vaccine rollout.

Group home administrators said many of their clients may still be eligible for a vaccine under the governor’s new rule because of their medical risks. The new plan also allows health providers to include people with health problems on a case-by-case basis.

Dee Metrick, the executive director of Reach Inc., which offers group housing in Bozeman, said the local health department was working to get residents of Reach vaccinated. However, she said, the change is creating more uncertainty for some people with disabilities across the state, as each county does things differently.

“We hope this plays out in their favor, but we just don’t know,” said Metrick, who added that people with developmental disabilities have historically not received proper medical care or fair treatment.

In Florida, the state’s covid vaccine plan included group living settings for people with disabilities in its early deployment of the vaccine in long-term care facilities.

“But there have been instances where local authorities haven’t received the memo,” said Jim DeBeaugrine, Prater’s brother-in-law, who is also the Florida Arc’s interim CEO.

The state has been criticized for being slower with its vaccine rollout than some had anticipated and after some camped in queues overnight to get a dose – something residents of the homes group can not do. DeBeaugrine said how and when group homes can get their residents vaccinated varies, but all should be able to start by March 1.

In February, Prater’s family had heard that he would have the chance to receive a dose, but a bacterial infection delayed him in being able to get the vaccine.

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