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Suspension of services, visits at group homes 'breaks your heart'

Staff at Angela's House in Stony Brook celebrate

Staff at Angela's House in Stony Brook celebrate Caroline Serva's 10th birthday. Credit: Darien Leary

The coronavirus has forced drastic changes at dozens of group homes for Long Islanders who are developmentally disabled or medically frail. 

At Independent Group Home Living, a consortium of not-for-profits that is one of the largest on Long Island, with members operating 82 group homes for 900 residents, parents haven’t been allowed to visit for weeks because of the fear of infection. Important but not urgent services, such as speech and occupational therapy, have been suspended along with residents’ school and work.

When Caroline Serva turned 10 earlier this month at Angela's House in Stony Brook, an IGHL home that serves children with serious medical problems, parents Robert and Karen Serva left birthday presents on the front porch.   

Caroline, who suffered a medical accident after birth that deprived her of oxygen, needs a ventilator to breathe at night and 24-hour nursing care. Last Friday marked five weeks since the Servas, who live in Miller Place, have touched their daughter. “You can’t hold your daughter on her birthday — it breaks your heart,” Robert Serva said. He and his wife trust Angela’s House staffers “to make the right decisions and we’re going to follow their rules,” he said. But "it gets harder with every passing moment," Karen Serva said. 

New York State’s Office for People with Developmental Disabilities supports nearly 14,000 Long Islanders; 311 have tested positive for COVID-19 and 41 have died, according to the agency. Newsday reported last week that more than three dozen residents at a home in Bayville for people with cerebral palsy tested positive for COVID-19 and three died.

That was not an IGHL home, but the consortium has had its own losses: Five residents have died from the virus, and 15 residents and 50 staffers have been diagnosed with COVID-19, according to chief executive Walter Stockton. 

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Developmentally disabled people tend to be more at risk from the coronavirus than the general population, said Jay Silverstein, executive director of another IGHL affiliate, Woodbury-based Center for Developmental Disabilities, which operates 20 homes as well as day programs for hundreds of adults and children across Long Island. 

“Many individuals we serve have medical complications” accompanying their disabilities, he said. Group homes in residential neighborhoods, which began replacing institutions in New York in the 1970s and '80s, may also be vulnerable in a pandemic. 

An unremarkable suburban home can house as many as 12 residents. “You can’t socially distance in a house with 10 people,” Silverstein said. “And because of the nature of the needs, there are three to six staff there at any given time.” Despite precautions — Silverstein’s staffers wear protective equipment head-to-toe, take their temperatures before work and do regular house cleaning — each shift change is, in theory, a chance for the virus to spread. 

Silverstein began curtailing activities at the center in mid-March and prohibited visits to all its sites on March 17. By late last week, 25 center staffers and five residents have contracted the virus, he said. Three of those were hospitalized; two died. 

At Angela’s House, founder Bob Policastro recalled his reaction to early news of the virus in Asia and Europe: horror. If hospitals here got swamped and began to triage patients, he feared, “our kids may not get priority when they’re looking at who would survive the virus.”

That has not happened, and Angela’s House staffers and the 23 children they care for are well, though the past weeks had been exhausting and morale-sapping, he said. Locking down the three homes his organization runs is “against everything that we preach... We want these kids to have the most fulfilling lives possible. But right now this is beyond our ability.”

Managing the organizations that support the homes, Stockton and Silverstein said they’d faced challenges they’d never anticipated. Gloves, gowns and masks were in such short supply initially that Silverstein’s staffers wore masks for a week at a time, though that shortage has abated, thanks in part to some key purchases and donations from Suffolk County Fire, Rescue and Emergency Services and others. 

Money is also a worry, though an OPWDD spokeswoman said the agency had increased rates for residential services and was making additional payments to organizations like IGHL's to cover additional costs.

Equipment and cleaning costs have shot up and revenue uncertain. On July 1 the organization expects a 2 percent cut to state funding.

Payroll has increased as staffers, most of whom are normally paid minimum wage, have earned overtime and bonuses. Some moved into quarantined homes for weeks at a time. "They're the buffer between life and death," Silverstein said.

Wayne McGowen, a maintenance worker and direct care counselor at an IGHL home in East Moriches, said he cleans every two hours of a 10-hour shift: “All the rooms get disinfected, and the halls, bathrooms, equipment, furniture, doorknobs, the garbage cans… We’re going to keep this up until it’s over. We don’t have a choice.”

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