For people with special needs and their families, coronavirus restrictions add challenges – The Philadelphia Inquirer

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.

Its 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 theres a bad virus thats getting people sick and we have to be really careful.

The teen, whos been taking dance classes since the age of 3, was set to play a fairy in Clearviews musical, Shrek, which had been scheduled to open March 19. Its the third year shes been in the high school musical, and its been one of the highlights of her life, according to her mother.

That, honestly, has been devastating, said Wells.

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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 its important that he not go outside right now.

Stay away from people, because we dont know who has [the coronavirus] or not. ... Thats why Im staying in my apartment. And its difficult because theres hardly nothing to do in here, except for watch TV, he said in a phone interview on Saturday.

Michael is a client of KenCrests 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 familys request, The Inquirer is not using his last name.

He keeps in touch with family members on the phone (I dont 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.)

Im stuck in. It seems like Im grounded. I cant go out, I cant leave my building, he said. I watch TV, I listen to music." His cat, Sally, "gives me something to talk to.

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 were working hard to make sure they dont have cabin fever," Baldini said of their clients.

And then theres the economic crisis.

Its 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 were assisting those clients to apply for unemployment, maybe for the first time in their life.

At the Wells house, Claires family has been fighting cabin fever with outside activities, like hikes and bike rides. We dont 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, whos 13. Her husband, Paul, who frequently travels for work, has also been home.

Theres 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 schoolings 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. Im 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.

Were 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, its also an educational crisis, said Dennis McAndrews, the firms 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 were paralyzed is not an answer.

He is very frustrated

Catherine Nolds son Russell Bosler is as isolated as its 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 homes staff members.

So hes 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, cant go out.

He is very frustrated. He doesnt really understand, said Nold, whos been going every evening to sit outside on the homes deck, talking to the men inside. The visits arent always nice. I keep going up there and I stay for an hour, but I get a lot of complaints. Its tough when somebody doesnt understand.

The homes staff has been amazing. Theyre working a lot of overtime. Theyre working sacrificially. Theyre 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 shes explained to her son that the reason people have to stay separated is so that the older people, like his grandmother, dont get sick.

Beyond that, shes 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.

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For people with special needs and their families, coronavirus restrictions add challenges - The Philadelphia Inquirer