Peter Prater’s family was not thinking about COVID-19 when the call came that he had been rushed to hospital with a fever.
It was April, and the Tallahassee Developmental Center where Prater lives hadn’t yet been diagnosed with COVID-19. The 55-year-old Prater with Down syndrome and diabetes became the center’s first known case in Florida, according to his family. Within two weeks, more than half of the roughly 60 residents and a third of the employees had tested positive for the virus, according to local news reports.
“We thought we were going to lose him,” said Jim DeBeaugrine, Prater’s brother-in-law, who also works as an attorney for people with disabilities. “We were not yet aware of any correlation with Down syndrome and poor results with COVID. He’s just a frail person, period. “
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Prater survived after about seven weeks in the hospital. But five others from the center – three residents and two employees – died. The center is working to adhere to federal and state pandemic guidelines, said Camille Lukow, regional director of the mentor network that put the facility into operation in December.
Early studies have shown that people with intellectual and developmental disabilities are more likely to die from the virus than people without disabilities, likely due to a higher prevalence of pre-existing conditions. While some high-profile outbreaks got the news, a lack of federal prosecution means the population will be largely overlooked during the pandemic.
No one knows how many of the estimated 300,000 people living in such facilities across the country caught COVID-19 or died as a result. This creates a blind spot in understanding the effects of the virus. And because data drives access to rare COVID-19 vaccines, people with disabilities could face the disadvantage of being prioritized for recording to ensure their safety.
While facilities ranging from government facilities for hundreds to homes in small groups with a few people have been closed during the pandemic, workers are still taking turns every day. The residents live in a very confined space. Some do not understand the dangers of the virus. Those who need help with eating or moving cannot stay away from others. Many institutions also struggle with having enough masks and staff on hand.
The Consortium for Citizens with Disabilities has repeatedly urged federal authorities to set up facilities where people with disabilities live under the same pandemic rules as nursing homes, which are required to report COVID-19 cases directly to national authorities.
Nicole Jorwic, senior director of public policy at The Arc of the United States, a nonprofit that serves people with disabilities, said it makes sense to look at nursing homes. More than 121,000 people have died in these houses as a result of the pandemic. However, it is unclear what the toll is in the facilities for people with disabilities.
“How do we know how big the problem is if we don’t grasp it?” She asked.
Greg Myers, press secretary for the Centers for Medicare & Medicaid Services, said in an email that states, not federal officials, manage Medicaid-funded interim care facilities and group homes for people with developmental disabilities. He said many of these facilities serve fewer than eight residents and do not “raise the same concerns as larger congregations.”
Some states are tracking the case numbers, though Jorwic said the type of information they are collecting varies. New York state data showed residents of disabled groups there were more likely to die than the general population. In Illinois, which called on the National Guard to respond to outbreaks in two of the state’s largest development centers in April, more than half of the 1,648 residents of state development facilities had the virus.
Still, cases fly under the radar. When The Associated Press conducted a national survey in June of how many people got sick or died of COVID-19 in such apartments, about a dozen states failed to respond or released comprehensive data.
“The delay or complete lack of access to this data is linked to a body count,” Jorwic said. “They don’t recognize that these attitudes are as dangerous as other attitudes like nursing homes.”
The Centers for Disease Control and Prevention guidelines recommend states give priority to long-term care facilities when the vaccine is introduced. Few states, however, indicated that people with disabilities living in group homes should be candidates for this initial vaccine distribution.
New York is one of the few companies to include dedicated facilities for certified groups and last month opened it to everyone with intellectual or developmental disabilities.
“New York State has the most recent data to reveal the horrors of COVID,” said Dr. Vincent Siasoco, a New York City general practitioner who focuses on patients with developmental disabilities.
Instead, many states are prioritizing based on a list of high-risk diseases set out by the CDC, which added Down’s syndrome to the list in December.
Siasoco, a board member of the American Academy of Developmental Medicine and Dentistry, said there are likely to be missing people with medical risks that are not yet reflected in data such as someone living in a group home with cerebral palsy getting food through a tube and can’t speak.
“More studies need to be done. Data has to be shared, ”said Siasoco.
Meanwhile, the Academy has stated that diagnoses of intellectual and developmental disabilities should be explicitly included in the list of high-risk conditions used to determine vaccination priority, and facilities housing people with disabilities should be accessible at the same time as nursing homes . Siasoco acknowledged that there are a long line of people advocating prioritization and not enough vaccines to get around.
In Montana, people in group accommodation, including those for the disabled, were at the stage where they were first on the vaccine list, just behind health workers and nursing home residents. But the new governor, Republican Greg Gianforte, instead prioritized all those aged 70 and over and those with underlying health conditions with the aim of protecting the most vulnerable. The change has nearly tripled how many people qualify for this phase of the vaccine rollout.
Home administrators for the group have stated that because of their medical risks, many of their clients may still qualify for a vaccine under the governor’s new rule. The new plan also allows healthcare providers to involve people with medical conditions on a case-by-case basis.
Dee Metrick, the executive director of Reach Inc., which offers group accommodation in Bozeman, said the local health department was working on taking photos of the residents of Reach. 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 works out in their favor, but we just don’t know,” said Metrick, who added that people with developmental disabilities have historically not received adequate medical care or fair treatment.
In Florida, the state’s COVID-19 vaccination schedule included group living environments for people with disabilities when the vaccine was introduced into long-term care facilities early.
“But there have been cases when the local authorities did not receive the memo,” said Jim DeBeaugrine, Prater’s brother-in-law who is also the interim CEO of The Arc of Florida.
The state has been criticized for being slower than expected in introducing the vaccine and after some camped in queues overnight to receive a dose – something group home residents cannot do. DeBeaugrine said how and when group homes can give vaccines to their residents varies, but all should be able to start this week.
By February, Prater’s family had heard that he would have the option of a dose, but a bacterial infection prevented him from getting the shot.
KHN (Kaiser Health News) is a non-profit news service dealing with health issues. It is an editorially independent program of the KFF (Kaiser Family Foundation) that is not affiliated with Kaiser Permanente.