How Corona Has Disrupted the Lives of Young Adults With Disabilities, Who Thrive on Routine

Original Article Published On The Jewish News Syndicate

With schedules disrupted, programs suspended and caretakers unable to report for work, people with disabilities, their families and professionals who work with them are experiencing new realities and experimenting with creative solutions.

Max Wagenberg had enough of coronavirus. According to his mother, Helene Richter, the 21-year-old minimally verbal Manhattan resident with autism, searched for and found an “escape strategy” from the pandemic. “Last night, he came to me with this drawing of two birds and asked me to help him turn it into an airplane, he went out to the side of the terrace and launched it—watching it soar through the buildings—as he smiled,” reports Helene. “So many people with special needs can’t put into words what is happening around them.”

With routines disrupted, programs suspended and caretakers unable to report for work, people with disabilities, their families and professionals who work with them are experiencing new realities and experimenting with creative solutions.

“Max has been doing a lot of drawing and calendaring and reading social stories. This has helped a lot,” reports Helene.

Molly Jacobs, a 23-year-old New Jersey resident with developmental disabilities has been dealing with a day habilitation program out of session and suspended until further notice. “The hardest part for her has been the unknown. She wants to know when the quarantine will be over, when will her program start again, and what is going to happen with camp. I don’t have the answers that she needs to feel secure and less scared,” notes her mother, Hannah Jacobs.

To help get through this difficult period, Hannah and Molly have developed new routines, taken advantage of technology and participated in special off-season summer-camp activities. “We focus on activities that we write on a daily schedule to give her goals to look forward to each day. The Zoom calls with her friends from both camp and her program have centered her,” said Hannah.

Max Wagenberg launching his paper airplane off his New York City terrace. Credit: Courtesy.

Molly is a longtime participant in the Tikvah overnight summer camping program at Camp Ramah in New England. “She loves the Havdalah services [for ending the Jewish Sabbath], which she wears pajamas to because ‘that’s what we do at camp.’ These are scary times for everyone, and for Molly, our focus is letting her know that it’s OK to be scared, and we are here to keep her safe.”

When 28-year-old Sammy Leibenstern’s day program was suspended, he left his group home in Santa Clara, Calif., and returned to his family’s home in Santa Cruz 45 minutes away. “He’s definitely enjoying the TV time,” reports younger sister, Ruby Hartman. “But it’s getting tough to also get him motivated, active and engaged in more thoughtful activities.” Ruby reached out on Facebook to many of her old Jewish summer camp friends who also knew Sammy from camp. She asked them to consider setting up a time to reach out to Sammy and was pleased with the outpouring of support and willingness to help.

‘They are prone to isolation’

Gabrielle Kaplan-Mayer, director of Jewish Learning Venture’s “Whole Community Inclusion” in Philadelphia, observes, “The coronavirus quarantine has impacted Jews with disabilities in a number of different difficult ways. First, many people with disabilities have coexisting medical conditions, which put them at high risk for the virus. People living in group homes, residential schools or community residence aren’t able to see their family and friends. Many school-age children and teens have lost access to special education and school-based therapies, and parents are struggling to home school as best they’re able. It’s an incredibly hard time.”

Stacey Spencer, the Inclusion Program Manager at Jewish Family and Children’s Service of Minneapolis, reports, “I am still working on creating a sense of community with our Caring Connections participants, who are Jewish adults with disabilities.”

Spencer is finding creative ways to create community when in-person events and in-person home visits are no longer possible. “I have made numerous check-in phone calls and virtual ‘home visits’ to our Caring Connections members and their families to provide them with support and to be able to assess their current needs. I set up a closed Facebook Group and invited our Caring Connections members, their families and staff to all join us,” she relates. “Our members were unhappy to hear that our annual Passover ‘Sing-a-long Seder’ scheduled for April was canceled. This was yet another disappointment and change they experienced while trying to adjust being quarantined at home.”

But she adds that “our seder leader was still able to perform our lively and interactive sing-a-long live for everyone to partake in. It was a wonderful and heartwarming event. They are modifying their lives to this ‘new normal’ much like the rest of us are trying to do.”

Shelly Christensen, also of Minneapolis, a disabilities inclusion professional who worked on the Ruderman Chabad Inclusion Initiative and wrote From Longing to Belonging—A Practical Guide to Including People With Disabilities and Mental Health Conditions in Your Faith Community. She echoes Spencer’s observation that people with disabilities are adapting to some of the same challenges the rest of society is dealing with. “All of us are adapting how we structure social connections. People with disabilities are just like anyone else,” she said.

While Christensen notes that many people are staying connected with friends, family and co-workers through Zoom and social media, and that there are groups on Facebook specifically to connect people with disabilities, she worries about people with disabilities who don’t have access to smartphones, tablets and computers, or who don’t know how to use such technology. She says “they are prone to isolation.”

She also worries about the potential loss of direct-support professionals if the professional or individual they are caring for is exposed to the coronavirus.

‘How to stay engaged, manage technology’

Rabbi Bentzion and Rochel Groner, co-directors of Friendship Circle, affiliated with the Chabad-Lubavitch movement, and ZABS Place (a Friendship Circle-run resale store) in Charlotte, N.C., are also finding ways to help those they work with tackle boredom and loneliness.

The rabbi reports, “We’ve taken all our Friendship Circle programs online and increased the number of virtual activities. And we’ve tried implementing one-on-one home-based skill-building activities for our coaches to do with our ZABS young adults. It’s been a little more challenging, but at least they get to see familiar faces.”

They add that “for the most part, the biggest challenge we’re hearing from everyone is figuring how to stay engaged in a routine despite being in quarantine.”

Friendship Circle New Jersey executive director Toba Grossbaum gives a virtual cooking class for Friendship Circle families. Helping her with the program are three of her children, Gittel, Liba and Yudi. Credit: Courtesy.

The Groners, like Christensen, are finding that technology is sometimes difficult to use and can be unpredictable, which tend to complicate matters even more. Another challenge, they note, is how to manage the technology, which is sometimes delayed or has a learning curve for some of their constituents. They also point out that some young adults are much more isolated in terms of access and can’t participate in online activities.

While people with and without disabilities are primarily focusing on present-day realities, most are also imagining what a post-corona future will look like in terms of both social interaction and employment. People with disabilities have been severely impacted by loss of jobs and are likely to experience the impact of severe unemployment even when the economy is more fully up and running. At ZABS Place, the Groners anticipate that many skills will need to be retaught. “We’re not sure how our young adults will feel about having to ‘take a few steps back.’ That will also impact how quickly we can get up to speed as a store.”

Steve Keisman, senior vice president at the online site Identifor, and an independent transition and neurodiversity employment specialist, is concerned. “After nearly a decade of gradual attention and limited but increasing opportunity for people with neurodifferences in the workplace, that train hit a brick wall without warning in March of this year.”

He asks, “What will the ‘new normal’ look like for our community, especially the more impacted and those who are not STEM-oriented or savant? What’s the future for the estimated 50,000 to 70,000 individuals with autism alone who turn 21 every year and no longer qualify for school-sponsored and funded services?”

Keisman points out that hospitality, retail, food service and other areas of long-established employment for the neurodiverse will be slow to recover and will likely return in a very different way. Employment in hospitals, schools, restaurants, gyms and health clubs will also be reconsidered because of health concerns and risks. He recommends that concerned family members of people with disabilities continue to determine the specific skills, abilities and interests of the family member, and to explore various employment possibilities that might be a good fit when the economy unfreezes. (He also recommends online career-assessment tools like the free, game-based Identifor.)

Those in the disabilities field, along with their families, hope and pray that Max, Molly, Sammy and the tens of thousands of other Americans with certain challenges will soon return to their social, religious and vocational routines—and to the day when Max will longer need to draw pictures of birds in search of freedom.

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