To Lori Wells in Mullica Hill, N.J., the strict observation of social distancing is particularly important for her family.
Her older daughter, Claire, has a history of pneumonia and respiratory illness, and spent time in the hospital on oxygen last summer. Claire, 18, a senior at Clearview Regional High School, also has Down syndrome.
“It’s hard to get a good feeling of how much she truly understands” about the coronavirus, Wells said last week. “We just keep telling her that there’s a bad virus that’s getting people sick and we have to be really careful.”
The teen, who’s been taking dance classes since the age of 3, was set to play a fairy in Clearview’s musical, Shrek, which had been scheduled to open March 19. It’s the third year she’s been in the high school musical, and it’s been “one of the highlights of her life,” according to her mother.
“That, honestly, has been devastating,” said Wells.
Coronavirus and the measures to control it can pose extra challenges to people with special needs and their families, and to the organizations that serve them.
Some with disabilities could be particularly vulnerable should they catch the virus. And the practice of social distancing conflicts with decades-long efforts to include all people with intellectual disabilities as fully as possible in their communities.
Michael, a 47-year-old who lives in his own apartment in a suburb near Philadelphia, knows it’s important that he not go outside right now.
“Stay away from people, because we don’t know who has [the coronavirus] or not. ... That’s why I’m staying in my apartment. And it’s difficult because there’s hardly nothing to do in here, except for watch TV,” he said in a phone interview on Saturday.
Michael is a client of KenCrest’s Supported Independent Living program, which helps people with intellectual disabilities live as independently as possible in the homes and communities of their choice. He had been working part-time at T.J. Maxx before coronavirus restrictions narrowed his world. At his family’s request, The Inquirer is not using his last name.
He keeps in touch with family members on the phone (“I don’t have FaceTime”), but his routine, which included trips to the park or to the grocery store with Rachael Miroddi, a KenCrest regional program manager, has been disrupted.
Now, ”she comes in and sees me for a couple of seconds, and she leaves,” and they must keep their distance from each other. (Miroddi has been delivering his groceries.)
“I’m stuck in. It seems like I’m grounded. I can’t go out, I can’t leave my building,” he said. “I watch TV, I listen to music." His cat, Sally, "gives me something to talk to.”
KenCrest, a social-services organization founded in Philadelphia in 1905, has had to temporarily close day programs in Montgomery and Chester Counties that helped about 350 adults, including some from Philadelphia, participate in both work and leisure activities, said KenCrest CEO Marian Baldini.
It has also shut down its seven early learning centers and is looking for new ways, including video, to provide services like speech therapy remotely in its early-intervention programs, which serve children 5 and younger with developmental delays or disabilities, Baldini said.
The organization runs about 180 group homes in Pennsylvania, Delaware, and Connecticut, including a large number in Philadelphia, “and we’re working hard to make sure they don’t have cabin fever," Baldini said of their clients.
And then there’s the economic crisis.
“It’s almost like a slide into a full stop,” as the businesses and schools that employed some of their clients shut down, she said. “More and more of our clients are being laid off, and we’re assisting those clients to apply for unemployment, maybe for the first time in their life.”
At the Wells house, Claire’s family has been fighting cabin fever with outside activities, like hikes and bike rides. “We don’t usually go hiking three times in a week together,” as they did last week, Lori Wells said.
A genetic counselor at Cooper University Hospital, she was home last week with Claire and her sister Grace, who’s 13. Her husband, Paul, who frequently travels for work, has also been home.
“There’s been aspects of this that have been really wonderful,” including getting to eat dinner together, she said.
Claire, according to her mother, has been taking “serious joy” in some new chores, including doing laundry and “Lysoling doorknobs.”
Remote schooling’s been tougher, though.
“I absolutely applaud all that these schools have done,” she said, but Claire has needed a lot of help with her online assignments. “I’m getting a new appreciation for some of her strengths and weaknesses.”
The closing of schools to stem the spread of the coronavirus will pose “some really significant issues for students with disabilities,” said Michael Connolly, of McAndrews Law Offices, whose focus includes special education law. "For some students, it may work, the online services, but for others that may be a real problem for them to access that in any meaningful way.”
“We’re in the midst obviously of a health and economic crisis,” but for students with special needs, who may more easily regress during a break in schooling, it’s also an educational crisis, said Dennis McAndrews, the firm’s founder. “They are cut off from the thing” — education — that could give them a chance at independence as adults, and he fears that the longer this goes on, the more damage will be done.
“This is the time for creativity” to address their needs, McAndrews said. “To say we’re paralyzed is not an answer.”
Catherine Nold’s son Russell Bosler is as isolated as it’s possible to get for someone who needs help with the basics of living.
“Even going to the bathroom or taking a shower, none of that he can do by himself,” said Nold of her 31-year-old son. Bosler, who has cerebral palsy and an intellectual disability, lives in a group home in Lansdale with three other men and the home’s staff members.
“So he’s in close proximity to people all the time,” said Nold, of Lower Gwynedd.
The home, however, is closed to all visitors, including family, during the coronavirus pandemic, and Bosler, whose normal routine includes a job at a sheltered workshop, music lessons, church, and other activities in the community, can’t go out.
“He is very frustrated. He doesn’t really understand,” said Nold, who’s been going every evening to sit outside on the home’s deck, talking to the men inside. “The visits aren’t always nice. I keep going up there and I stay for an hour, but I get a lot of complaints. … It’s tough when somebody doesn’t understand.”
The home’s staff “has been amazing. They’re working a lot of overtime. They’re working sacrificially. They’re not with their own families. … This could not be easy," she said.
Nold, a KenCrest board member who also works for the Montgomery County Association for the Blind, said she’s explained to her son that the reason people have to stay separated is “so that the older people, like his grandmother, don’t get sick.”
Beyond that, she’s been trying to break information about the coronavirus crisis into small chunks, making “little bite-sized plans” with him — like calling someone at a particular time — to give him things to look forward to.
“He would be distraught,” she said, if she told him the restrictions on his activities might last for months. “A couple of months is a lifetime to him.”