COVID-19 hits the developmentally disabled with ferocity
Mortality rates and unemployment are high among the disabled in New York
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IN APRIL Léa Folly-Gah, a resident supervisor at a group home for those with developmental disabilities, set the table for dinner with one of the residents. They came to a spot where another resident normally sits. Folly-Gah told him not to set a place for the absent resident, because she was in the hospital with COVID-19.
“For a good three minutes he stood by the spot where she used to eat and was spaced out,” said Folly-Gah. The residents have lived together for decades, and usually if anyone from the house has to go to the hospital, the others go to visit. They can’t now. The residents keep asking Folly-Gah about their hospitalized housemate: “Is she coming back?”
Those in New York with developmental disabilities—autism, cerebral palsy, Down syndrome, or similar physical and intellectual disabilities that require supportive care—have experienced the dual economic and physical evils of the virus.
Economically, the virus has deprived many with disabilities of hard-won jobs. JobPath, a New York organization that helps those with developmental disabilities find jobs, has seen 80 percent of its clients lose their jobs during the outbreak. Other job placement groups have seen similar numbers. One person with disabilities I talked to worried about movie theaters, where he had a job, going out of business.
“The job means a lot financially and the job means a lot emotionally,” said Fredda Rosen, the head of JobPath. “They get to spend their days the way most people spend their days, to make friends and contribute. … I always think it’s the best way for people with disabilities to be included, is to work.”
Rosen has worked with JobPath for 40 years, and she said she has “never, never, never” seen anything like this economic crash for her clients, even in recessions.
Physically, the virus has hit the developmentally disabled community in New York with a mortality rate as bad as the worst-hit nursing homes in the state: 15 percent, as of April 26. Of 2,012 confirmed cases of COVID-19 among those with developmental disabilities, 300 have died, according to New York’s Office for People with Developmental Disabilities. The percentage of deaths from confirmed cases among the general population in New York is about 6 percent.
The Center for Family Support, which operates 45 group homes in New York and New Jersey, has experienced some of those deaths. CEO Steven Vernikoff estimated about 6 percent of its residents were in the hospital when we talked. For perspective: 6 percent of New York City would mean about half a million New Yorkers were hospitalized, in a city that has 23,000 hospital beds. Many of the hospitalized residents were on ventilators, Vernikoff said. And so far in New York, only a small slice of patients have recovered after being on ventilators.
“I don’t know how to … ” Vernikoff trailed off, trying to describe his feelings. He’s worked in this field for 42 years. “We’ve all put a lot of our energy and effort to try to create a better world for them. … Not only is it something I’ve never seen before, it’s something I never imagined that could have occurred.”
Vernikoff doesn’t know how to help his staff and the residents grieve. Normally there are specialists for helping those with developmental disabilities deal with grief, but “doing it virtually is just not the same thing,” he said.
Everyone is struggling in the group homes, he said: “People don’t understand why they can’t go out, why they can’t do what they normally do. That’s hard for them. Staff is under much more pressure to make sure everyone is safe and healthy. It’s a much more strenuous world for everyone involved.”
The Center for Family Support’s clients have nearly a “100 percent” unemployment rate now too, Vernikoff added. Ernesto Franco Jr., has developmental disabilities and for almost 10 years was an administrative assistant at the Center for Family Support. He would restock supplies, copy documents, shred papers, file papers, and stamp invoices. He would leave his house at 9 a.m., get to work by 10 a.m., and go to his desktop computer: “I click on the upper left where it says ‘Clock In,’ I press that green button.” Then he would get to work.
Each year he got a card from the organization marking his work anniversary: “They said I was a great asset to the department.”
He got a letter in April that he was being laid off.
“I was completely disappointed,” he said. He misses his co-workers, “the best part of my job.”
Now he wakes up, checks his email, social media, and “then I just relax and eat dinner that my mom prepares, and during the night I go to sleep and then I wake up the next day,” he said. He’s a huge New York Yankees fan, so he doesn’t have that to watch either. He worries about his aging parents in the pandemic.
IN EARLY APRIL, Folly-Gah volunteered to quarantine with the residents, some of whom already had COVID-19 symptoms, at the Queens group home that she manages. The hope was that reducing the staff coming and going would reduce risk to the residents.
Folly-Gah had to leave behind her mother with dementia, whom she has cared for for many years at her home. She found a friend to help her husband with the 24-hour care for her mother while she was gone, and packed her bags for the group home.
Her husband, as he was driving her to the home, asked why she decided to volunteer when she had legitimate reasons to remain home. She could still back out.
“Some of them don’t have families,” she told him. “They see me every day. If you were in their shoes right now, you would need to have a familiar face to comfort you, wouldn’t you?”
This is exactly where Folly-Gah wants to be now. At one point in her schooling she considered becoming a nurse. But when she realized that nurses nowadays do more computer and paperwork, she opted for this field to be closer with patients.
But the quarantine has been hard on her and the other staff. Folly-Gah said it’s nearly impossible to social distance in the midst of giving baths or feeding, especially when someone might not understand instructions about distancing. Others in the field say protective gear for workers in group homes is limited, since most of it has gone to hospitals.
And hearing about “COVID, COVID, COVID” all the time “does affect your mental stability I think,” said Folly-Gah. Workers in the house at one point all imagined that they had lost their sense of taste or smell, that the virus had found them. But so far they are all healthy.
Not so for the residents. The first week of her 24-hour quarantine with five other staff members, two of the nine group home residents went to the hospital in ambulances. The few with COVID-19 symptoms were staying isolated together, while the workers checked their vitals regularly and stayed in touch with a nurse.
With that backdrop the staff tries to keep everything normal, especially since the residents can’t go to their usual day programs. They cook together, play games, watch television. They work on life skills: tying shoes, eating on their own, buttoning their shirts, making conversation, brushing teeth, baking cakes. Local restaurants have left food for them outside. Folly-Gah’s husband has dropped off West African food for the house to eat, and the other workers living together share their cultures’ cuisines together. Many of the residents like Italian food, so Folly-Gah made chicken cacciatore one night.
One resident confined to a wheelchair came to Folly-Gah every day in the kitchen, gave her a list for the supermarket, and told her she will be doing the cooking for her, much to Folly-Gah’s amusement. The residents have asked about Folly-Gah’s mother. She was fine but seemed to know her daughter was gone: She kept going to the living room spot where Folly-Gah usually sits.
“Some have questioned us, ‘When are you going home?’” said Folly-Gah. “We said, ‘We’ll go home but we have to take care of you first.’”
Queens Center for Progress (QCP) runs Folly-Gah’s group home, and has 78 residents in nine other homes in the borough. The outbreak has killed five of those 78, and QCP executive director Terri Ross estimated that 10 other residents were in the hospital when we talked. One nonverbal resident in a wheelchair went into the hospital, was on a ventilator, then came off the ventilator and seemed to be doing better. But he rapidly deteriorated and died.
“I’ve been in the agency for 30 years. If we’ve had five people in our homes die over 30 years, that’s a lot,” she said. “So just one after the other after the other, it’s just crazy. … It’s heartbreaking. These people are our family.”
SO HOW CAN Christians minister to those with disabilities in the midst of anxiety and sadness? Volunteers for one Christian organization serving the developmentally disabled in New York, called Do for One, have made grocery and prescription runs or dropped off gifts at the hospital. But another answer was a talent show over Zoom: Fighting loneliness and anxiety was its own form of “crisis relief,” said executive director Andrew Oliver.
Do for You specifically asks city agencies for references of people with disabilities who might be struggling with loneliness, or who have few family members around. Some, Oliver has found, can go their whole lives without friendships outside of those employed to help them. The outbreak has added anxiety for those with disabilities who live on the support of their aging parents, without whom they might be in a nursing home.
“Relationships that have been made through our program, we see the fruit of that now,” said Oliver. “Trust has been built.”
For one joyful hour the Queens talent show squelched the pandemic anxieties. It began with one of the Do for One clients showing the others how to change their Zoom backgrounds, which began flickering between the Golden Gate Bridge, a beach, and outer space. In the real background of one home, a television was playing the news showing Gov. Andrew Cuomo was extending New York’s stay-at-home order.
As the talent show launched, clattering applause from participants mid-show-and-tell constantly broke up the internet audio. One man showed his paintings and drawings: simple skylines that he had made up in his head. Another man sang a worship song in English and Spanish: “Your love surrounds us … ” Then he invited the others to watch him livestream worship songs on his social media channels.
One man shared that in quarantine he had been learning about other places in the United States that have New York names, like Manhattan, Kan., and Brooklyn, Ill. Normally he draws pictures of New York City, but he hasn’t been able to in quarantine.
“I’m too stressed with this outbreak. I can’t think properly,” he said. “When I hear people are dying, it makes me very sad.”
One of the Do for One volunteers encouraged him to try to draw to take his mind off the anxieties.
“Yeah, you’re right,” he said. Then he added, “Faith is more powerful than fear.”
Meanwhile another group member, Aaron Kirsch, showed a scrapbook he had made that included memorabilia across his life, like tickets from when he saw Beauty and the Beast with his parents and went to a New York Yankees baseball game.
Kirsch also dug up a DVD of his American Idol audition from when he was a teenager. As the DVD started playing, Kirsch said over the sound of his singing, “That’s me, a long time ago!” His mom sitting and watching on the couch bopped along, and at the end his friends fist bumped him through the camera.
One quieter member of the call showed origami flowers and birds that she made. Her Do for You friends asked if she could make one while they watched, and she shyly obliged, deftly shaping a flower.
“She’s very good,” said Kirsch. “Me and my mom can never do origami, it’s too hard.”
At the end they all planned an online game night together.
And later at Folly-Gah’s group home, not far from the Astoria talent show, more good news came in a sea of bad: Both of their hospitalized residents were returning home.
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