For adults with intellectual disabilities, COVID-19 poses many challenges
KenCrest is a Philadelphia-based provider organization that is striving to keep the intellectual disabilities community safe, even as their clients are at greater risk of contracting COVID-19.
Michael Swainson, 47, is a very independent adult. He also is a client of a program that helps people with intellectual disabilities manage for themselves as much as possible in the homes and communities of their choice.
Swainson rents his own apartment and works at a Philadelphia store five days a week, either walking the 22 minutes it takes to get there or taking a rideshare. He has a girlfriend, and is a sports fanatic: “If I can, I’m never home. I go to Phillies games. I go to Eagles games. I go to Flyers games. I’m a big sports person. It’s better to be there at the games in person,” said Swainson.
When COVID-19 hit, and Swainson was furloughed and had to follow stay-at-home orders, he became depressed and worried about his finances — as did millions of Americans. But for him and other adults with intellectual disabilities, the pandemic came with an additional layer of complexity, because they need extra assistance with issues far less challenging than this.
“I got upset, and I couldn’t do anything about it,” Swainson said.
Swainson is a client of KenCrest, a Philadelphia-based provider organization that is striving to keep the community safe, even as its clients are at greater risk of contracting COVID-19. Lauren Tilghman, director of strategic communication for KenCrest, said the majority of its clients have underlying health conditions such as heart disease, stroke, or diabetes, which makes them more vulnerable to the coronavirus. In Pennsylvania, people with intellectual disabilities are nearly twice as likely to die from COVID-19 as other residents who test positive for the virus, according to an NPR analysis.
“Michael had his good days and his bad days, like we all do,” said his program manager, Rachael Miroddi. “He didn’t want to rely on anybody. He’s very independent. He likes to do things for other people. He’s a very generous, kind-hearted person, and when he wasn’t working, he wasn’t able to show that as much as he liked.”
Miroddi said that Swainson likes to buy his own groceries and personal items, and that it was very difficult for him when he had to rely on her to deliver food and other necessities to his door. He was also dealing with a lot of worry about the pandemic, Miroddi said. She texted him multiple times a day — encouraging him to take socially distanced walks in a park and to spend time cleaning and reorganizing his apartment.
“I think that people in our program are way more capable than society tends to give them credit for, especially when it comes to working,” Miroddi said. “Just because they’re in a program doesn’t mean they can’t do what we can do.”
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KenCrest conducts early intervention with families and runs early learning centers in Philadelphia, in addition to providing housing, employment, and programs for adults with intellectual disabilities.
“Our goal is to work with them on their dreams so they can get assistance to learn skills,” said KenCrest president and CEO Marian Baldini.
Stephen Davis, program director for PersonLink, another agency in Philadelphia providing supports to people with intellectual disabilities, also said the pandemic has been very disruptive to its clients.
“If you want to talk about empathy, the first thing that we should think about is, whatever you may be going through as an individual, know that our population is experiencing that tenfold,” Davis said.
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He pointed to particular challenges his clients are confronting, such as wearing face masks. Centers for Disease Control and Prevention guidelines say that a person who cannot independently put on or remove a face mask should not be wearing one.
“Well, that might be ... 60% of our population, that may need assistance with removing or putting on a face mask,” Davis said. “That means you can’t go back to your community participation support. It means you also probably cannot engage in certain things in your immediate community. So you’re even more restricted.”
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Furthermore, Davis said the pandemic is putting his clients at an even higher risk of being abused than they were before COVID-19.
“We also know that 70% of the perpetrators of that abuse, neglect, and exploitation are family members or primary caregivers,” Davis said. If you’re shutting down that person’s ability to go to their [community participation services] provider and you’re shutting down that person’s ability to go to their supported employment provider … you may be, in fact, restricting them to be at home all day with their abuser."
To mitigate these circumstances, PersonLink’s support coordinators keep in close touch with their clients, and the agency provided about 20 clients with iPads, so they can stay in touch with the outside world. In addition, PersonLink employees conduct phone calls or drive-bys and porch visits to make sure everything is OK, Davis said.
Another challenge was finding professionals, such as Abiola Ajibola, who were willing to work with individuals in supported living who had tested positive for COVID-19. For weeks, Ajibola lived in three KenCrest homes with three different sick clients, nursing two of them back to health. The third had to go to the hospital.
“I don’t have any underlying illness, so that gave me the force of encouragement that I would be able to render good services,” Ajibola said.
He followed a strict cleaning protocol and mostly stayed with his COVID-19-positive clients in their rooms. With one nervous patient, “I used my hand to brush her hair,” he said. “I talked to her. I said, ‘Give me a smile. It will be OK.’”
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One of the most rewarding aspects of his work during the pandemic was seeing sick clients not only recover but also regain their independence, Ajibola said.
Swainson said that sometimes he gets depressed about the pandemic, even though he is back at work.
“It is what it is,” Swainson said. “I can’t really do anything about it. We just have to go through it.”