COVID cases in New York group homes under scrutiny after nursing home controversy

In the early days of the Coronavirus pandemicThe administration of New York Governor Andrew Cuomo issued a note instructing hospitals and collective residences to “accelerate” the release of asymptomatic residents from group homes to their places of residence. communal life. The order may have had dire consequences. State data obtained by CBS News show that the virus ravaged group homes in the state, infecting more than 20%, or one in five, of its residents.

More than 34,500 people with intellectual and developmental disabilities live in group homes in New York, and 552 deaths have been reported from COVID-19 as of March 7, with 6,934 residents positive since 2020, according to data provided by the State Office for People with Developmental Disabilities, the agency that oversees support services and group homes.

In recent weeks, Cuomo has been criticized by the state Misleading reports of deaths by COVID-19 from nursing home residents, which left thousands of cases out of the nursing home if the person died in a hospital. The governor now admits it was a “mistake.” The controversy drew renewed attention to a much-criticized policy since the first wave of the pandemic: to allow the release of coronavirus patients in recovery from hospitals to nursing homes, even if they could still be contagious. The March 25, 2020 note authorizing the nursing home policy expired on May 10.

What has attracted the least attention is that the now-conflicting administration also issued a similar directive on April 10, 2020 that affected residents of collective housing. The State Office for People with Developmental Disabilities (OPWDD) told residential facility operators to be prepared to “accelerate the return of asymptomatic people.” [group home] “The board noted that there should be clinical staff available to meet their medical needs and that”[s]Standard infection control precautions must be maintained. “

“In line with public health recommendations, OPWDD issued a guide instructing providers to accept people only if they could safely accommodate them in the group’s home,” said Jennifer O’Sullivan, director of office communications, to CBS News in an email. “People who could not be housed safely stayed in the hospital or were cared for in one of the more than 100 temporary places established for COVID-19 recovery efforts.”

The April 10 order of the OPWDD is still in force, according to the agency. Cuomo’s office did not respond to a request for comment on the policy.

Members of the state legislature’s disability and mental health committees are asking for answers.

“I am deeply concerned that the April 10 OPWDD order unnecessarily endangers some of our most vulnerable citizens,” Republican State Sen. Michael Martucci, a senior member of the Senate Disability Committee, said in a statement. press release. “Near the deadly order of the Department of Health’s nursing home, that order seems dangerous and deaf.”

“It’s a human rights issue, obviously”

Early data show that people with intellectual or developmental disabilities living in group homes may be more likely to die from COVID-19.

“When nursing home deaths began to become apparent during COVID, I had this sick feeling that,‘ My God, what if James was in a group home? Maybe we should have missed him, “Maria McFadden Maffucci told CBS News in an interview with Zoom.” So I felt like we had dodged something. “

For Maffucci, who lives in New York and works as the editor-in-chief of The Human Life Review, this revelation came especially home. His son, James, is on the autism spectrum. Before the pandemic arrived, Maffucci had just started looking for a group home for James, who also suffers from autism catatonia, a form of regression seen in people with autism.

“He really went back to the point where he was stuck in the same place for hours and had other weird TOC or freezing activities, with difficulty starting activities,” he explained.

He said the condition began to worsen about three years ago.

“He really couldn’t get out of bed. And then we started treating him with different medications,” he said. “So to be honest … it’s been a very hard journey.”

Although James still has an assistant who comes three days a week to do activities, with masks on, Maffucci said he has stepped back even further during the pandemic without the programs he used to go to.

“Even when he wasn’t doing so well, he was able to go out, as if he was dancing and bowling with his Southeast consortium,” Maffucci recalls. “And when the pandemic hit, everything, of course, stopped.”

Maffucci says James is eligible for the COVID-19 vaccine, but also acknowledges the struggles of other families to get a vaccine for their loved ones.

“You can say the good of a government or a society on how the most vulnerable members are treated, and now we are not doing so well,” he said, his voice trembling and breathing. “It’s a human rights issue, obviously.”

Sixteen-year-old Jessie Strieter is one of those vulnerable members. He has Down syndrome and other underlying health issues.

“Shortly after he was born, at the age of three months, he had a heart repair,” his mother, Lisa Strieter, said in a Zoom call. “For the last two years, Jessie had a stroke and we didn’t know where they came from. And honestly, we still don’t know.”

Protecting Jessie from the new coronavirus is the family’s top priority. Because Jessie is considered high-risk, they only go out to buy groceries, doctor’s appointments, or work.

She and her sister, Halle, do not attend classes in person, opting to go completely away. Halle, a student at Siena College, works as a janitor while her parents are at work, making sure Jessie logs into her high school classes and prepares meals for the family. In between, she has to find time for her own homework.

“It’s not easy to go from a very social lifestyle to being in quarantine for almost a year,” the 21-year-old admits in an email. “But if it’s to keep my sister safe, then she’ll keep doing it every life.”

Lisa Strieter, who works as a teacher in Rockland County, a suburb of New York City, was able to receive the COVID-19 vaccine in February. But at first, the mother of three could not get any information on when her high-risk daughter would be allowed to receive her.

“I was lucky to get my two shots. So I’m in a good position,” he said. “Now we just hope Jessie can come next.”

Finally, New York expanded its eligibility criteria to include people with developmental disabilities from the age of 16, following neighboring New Jersey. Jessie is scheduled to receive her vaccine this month.

But the dangers facing people with developmental disabilities are often overlooked, leaving others like Jessie even more vulnerable.

The case for more data

According to the CDC, 6.5 million Americans have an intellectual or developmental disability, or IDD, and an estimated 2.6 to 4 million live in group homes. A recent study, published in the Journal of Disability and Health, found that people with IDD living in group homes may be more likely to die from COVID-19.

Other research has found that people with IDD have a higher prevalence of comorbidities, including hypertension and heart disease, identified as risk factors for COVID-19.

Scott Landes, co-author of the study and associate professor of sociology at Syracuse University, said the pandemic has exposed the shortcomings of the medical community “as we make decisions about who to collect data, what to report and who we stand out., who gets the priority “.

“I think on a philosophical, underlying level, it’s because we haven’t been able to value this group,” he said, which he and his colleagues “are very focused on trying to change.”

His first study used a database of health records, which showed that the ages of people with IDD who died from COVID-19 deviated younger than average. The state with the most complete data set was California, which included COVID-19 results for people with intellectual and developmental disabilities along with information about their type of life situation.

“We found that the number of cases that indicated the spread of the virus was more severe in environments that had more residents,” he told CBS News in Zoom. “We know this from what we know about nursing homes.”

But studies have repeatedly pointed to a more systemic problem: the lack of available medical data on people with IDD, many of which are associated with serious outcomes.

“There has been no consistent or systematic report on the results of COVID-19 for people with intellectual and developmental disabilities,” Landes said. “We know of some states that have data that is not publicly reported.”

In New York, health officials offer residential facilities and other health care providers a weekly briefing on COVID-19 data, but it is not shared with the public, according to Landes.

“That’s why, for our second study, we relied on data from New York Disability Advocates, which is a conglomerate of providers across the state who have collected and reported their own data.”

Dr. Margaret Turk of SUNY Upstate Medical University, who co-authored the study, noted that it is not just a problem for people with intellectual disabilities. Historically, there have been no consistent reports for people with other types of disabilities. He stressed the need for a better information system as well as more inclusive education for those in the medical field and others.

“People don’t think of‘ disability ’when they think of‘ diversity, ’” he explains. “Probably all of our health education needs someone or some group to review it, just as there is for other diversity-related issues that seem to have been discovered by the pandemic.”

In:
• Andrew Cuomo
• COVID-19[feminine[feminine