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As the coronavirus swept through hundreds of New York City’s residential group homes for people with intellectual and developmental disabilities this spring, some facility operators defied state orders on how to handle the virus’ spread.
Going rogue may have helped save lives among a vulnerable population, those who house and support them say.
“We were somewhat fortunate that we had low numbers,” said an employee of a Bronx organization that serves people with developmental disabilities.
The facility had one of the lowest number of deaths among Bronx group home residents, with a 1% fatality rate. That was half of the 2% of group home residents state statistics show died on average at group homes citywide as of late June.
Why the much smaller death rate, even as The Bronx residents were likelier than anyone in New York City to die of COVID-19?
“Part of it was that we acted quickly” — no thanks to state officials, lamented the employee, who has knowledge of the administration’s decision-making process, and asked that they and the group not be named because of concerns about reprisal from the state.
Scramble for Space
As the virus spread in group quarters of all kinds, from nursing homes to jails, the state required group homes to isolate residents believed to be infected — but where?
The Bronx home decided that vacant spaces within the organization’s facilities would work.
With day programs for their clients shut down, rooms that had been used for programs and socializing would be transformed into isolated units for residents.
The organization also looked to help operators nearby who likewise needed a safe place to house residents with developmental disabilities while they recovered from COVID-19.
A mid-March email the group sent to the New York State Office for People With Developmental Disabilities (OPWDD) seeking its help in identifying groups in need of isolation rooms prompted an unexpected — and, to the employee, confusing — response.
Instead of offering its blessings, OPWDD responded by asking for a seven-point proposal.
The demands included a drawing of how beds would be configured and a description of how protective gear would be provided — at a time of acute shortages that drove some hospital workers to wear garbage bags for want of medical gowns.
After that, two different units from OPWDD would conduct plan reviews, before granting a temporary operating certificate.
By this time, more than 70,000 COVID-19 cases had been confirmed in New York City.
The state’s request left the Bronx provider incredulous. With the virus moving quickly, any time spent waiting for approval risked lives.
Instead of dedicating staff to fill out the proposal and wait for these reviews, the organization ignored the state’s requirements, isolating residents without official approval.
Several other group homes did too, according to Tom McAlvanah, who serves as the executive director of the Interagency Council of New York, an advocacy group and association of about 120 nonprofit providers and business partners.
Among the organizations that leapt into action on its own was YAI, one of New York’s largest service providers for people with intellectual and developmental disabilities. Ravi Dahiya, YAI’s chief program officer, said his organization ignored the state’s demand for a “safety plan” and moved potentially infected residents into isolation.
“We had to respond to situations as they happened,” said Dahiya.
Ultimately, the provider in the Bronx moved more than two dozen group home residents into spaces in its day facilities. The renegade action — defying the state bureaucracy on which the groups depend for licensing and funding approvals — was the only choice, said the employee.
“We were looking to help people stay alive,” they told THE CITY. “People would be dead before going through all of that.”
According to the OPWDD, 384 out of the 38,000 residents statewide in group homes coordinated by the office have died of COVID-19.
Residents of New York City group homes suffered the brunt of fatal infections, accounting for 183 of those fatalities as of June 24. That’s nearly half the deaths statewide, despite the 9,100 residents in the city representing less than one-quarter of those living in state-sponsored group homes.
The 2% loss of residents citywide put group home residents at the same risk of death as people in The Bronx ages 75 and over, who, as a group, have proven likelier than anyone else in New York City to die of the coronavirus.
Emerging research suggests people with developmental disabilities are far more vulnerable to COVID-19 than the general population.
A Syracuse University study published in late June found that people with intellectual and developmental disabilities living in group homes in across the state were significantly likelier than other New Yorkers to die if they caught the virus. The researchers based their findings on a May survey of group home operators that accounted for slightly more than half of residents.
The study noted that people with developmental disabilities are more prone than others to have chronic illnesses — including hypertension, heart disease, respiratory disease or diabetes, which have been identified as factors increasing risk of death among those infected with COVID-19.
Limited data makes it challenging for researchers to monitor medical risks to group home residents, said the paper’s lead author, sociologist Scott Landes. “We don’t monitor the health and well-being of people with intellectual and developmental disabilities in this country, or sometimes not at all,” he said.
The group home operators that did go through the state’s formal process created more than 100 isolation sites, according to Jennifer O’Sullivan, an OPWDD spokesperson. The process included “a safety plan review which was typically completed within 48 hours,” she said.
The state also asked Isolation sites to be open to residents from other facilities who needed a place to go — and staff in charge of their daily care had to relocate with them.
“Logistically, it is very difficult to do that,” said McAlvanah. “Some residents had issues with staffing because staff were getting sick.”
Many of those 100 sites reported that they didn’t end up using their expanded capacity, said O’Sullivan.
Meanwhile, other people with developmental disabilities had to endure the brunt of the virus while living independently, with support from service organizations.
José Hernandez, who was born with a learning disability, lived in a shared apartment with a revolving cast of roommates in the East Bronx.
He typically spent three days a week attending day service programs near his home, until OPWDD informed providers they had to shut down their day program facilities in mid-March. As part of the service, the program would pick him up from his apartment for the day and drop him back home.
“He enjoyed it because at least he could socialize with other people,” said his sister, Evelyn Hernandez.
“A lot of times, he would tell me he was lonely,” she recalled.
Hernandez’s roommates noticed he had coughing spells and encouraged him to go to the hospital in late March. But he refused.
A week later, Hernandez began struggling to breathe, and on April 3, his roommates called 911. He died two days later, at the age of 56, in a Bronx hospital.
“It just seems surreal sometimes that he’s gone,” his sister said.
Providers say their staff were working with patients who were severely ill with little outside assistance.
“We were dealing with situations where we called EMS and they wouldn’t enter the house and sa[id], ‘Do the best you can,’” said Dahiya of YAI.
Residents in group homes often need close, intimate contact with staff for daily care, making social distancing difficult. In the Bronx group home that set up its own isolation rooms, COVID-infected residents rarely went to the hospital because staff cared for them in-house.
“Direct support staff are first responders,” McAlvanah said. “They are the true heroes in this tale.
“Just like a good first responder, when there’s a crisis they don’t run away — they run towards it.”
Caitlin Antonios is a reporting fellow for Columbia Journalism Investigations, an investigative reporting unit at Columbia Journalism School. Funding for CJI is provided by the school’s Investigative Reporting Resource. CJI is participating in “MISSING THEM,” THE CITY’s ongoing collaborative project to remember every New Yorker killed by COVID-19.