Vital initiatives confront COVID crisis for those with intellectual and developmental disabilities

Lexi Chung, 28, and her friend Jessica Schmidt, 38, tuning into the online programming provided by Remarkable Disability Services. Chung and Schmidt now live together, after their parents felt that it would be better for them to be together during the COVID-19 pandemic. (Photo: Bonnie Schmidt)

By Brittany Edelmann
Medill Reports

“It has been a struggle,” Bonnie Schmidt said. 

Schmidt is the guardian to Kim Winger, a 35-year-old with autism, and the parent to Jessica Schmidt, a 38-year-old who also has a developmental disability and a seizure disorder.  

Many people experienced an increase in isolation during the pandemic. But, Bonnie Schmidt emphasized how isolation is already an issue for many individuals with an intellectual or developmental disability. To help with the increased isolation during the pandemic, Lexi Chung moved in with them. Chung is a 28-year-old with Down Syndrome and Type-1 diabetes.  

To keep everyone safe, Winger had to take a leave of absence at the grocery store that she worked at for the past 18 years. Even when she went back to work after receiving her vaccine in spring, a change in hours over the summer created new challenges. 

Winger’s behavior changed. 

Schmidt said she has meltdowns and wakes up saying things in a disgruntled tone about her work schedule –  “I only got four hours.”  The change took away her essential routine, which helps Kim and other people with autism thrive and can anchor their “very basic identity and purpose in life,” Schmidt said.  

The pandemic also left Schmidt trying to explain what was happening in the world with COVID-19. 

Anxiety overcame Jessica. She lived free of seizures for over 20 years until the COVID-19 pandemic arrived, leading to a renewal of seizures. Schmidt added how she knows three other individuals with a developmental disability and were seizure-free for many years, who also suffered from a return of seizures over the past year. 

This wasn’t just a struggle for Schmidt and her household. 

The calls that Ali Nyman, a licensed clinical social worker, and Samantha Sehter normally received at their local social service agency in Florida were to provide information and referrals for individuals with disabilities. But in 2020, at the beginning of the pandemic, the calls from families and caregivers “took a complete turn” and  “all of the sudden were crisis calls,” said Sehter, who holds a master’s degree in exceptional student education with a specialty in autism.

“I’m desperate.”

 “I can’t keep them engaged.” 

 “My child has autism. He’s 35 and I’ve never seen his behaviors as heightened the way they are now because of the pandemic.”

The phones at this social service agency never stopped ringing.

Chaim Slavaticki, a rabbi at Las Olas Chabad, a Jewish religious organization and community center in Fort Lauderdale, Florida, said he was also receiving calls from families. 

“I know it wasn’t fun for anyone being locked up [at home] during the pandemic, but the impact it had on the families and these individuals – it was heartbreaking to hear the stories,” said Slavaticki. “Routine is the most important thing and COVID broke their routine,” he added.

Routine wasn’t the only thing that broke.

He said iPads were donated to help provide some structure and activity.

Slavaticki received many calls about the destruction of iPads because of the frustration the recipients felt from the changes the pandemic brought.

“We had to replace a lot of iPads,” said Slavaticki. 

It is important for everyone to stay distanced and be extra cautious regarding COVID-19, but new research from the New England Journal of Medicine published in March found that people with an intellectual disability are almost six times more likely to die from COVID-19 than the general population. Researchers stated how there are higher levels of comorbidities and complex health conditions in this population. Some of the comorbidities listed in the research article that were documented before a diagnosis of COVID-19 range from hypertension and congestive heart failure to thyroid disease and diabetes. 

Higher admission to hospitals, more intensive care unit stays, and increased death rates in individuals with an intellectual disability diagnosed with COVID-19 in comparison to the general population, according to a peer-reviewed research study in the NEJM Catalyst Innovations in Care Delivery journal published on March 5, 2021. (Brittany Edelmann/MEDILL)

Many individuals that Sehter works with are fearful about their medical history and the vaccine. 

They would ask, ‘”Are we going to die? Are we going to die?”

Schmidt said her daughter has been to the hospital many times before the pandemic because of her medical history. During the pandemic, the emergency-room visits that she made were different from previous visits – a more ‘fearful’ experience due to masks and a sense of isolation.

Adding to the anger, fear and frustration that started to develop for many, employment issues arose as well.

A lot of people lost their jobs during the pandemic, but according to the U.S. Bureau of Labor Statistics about eight in 10 people with a disability were unemployed in 2020, compared to three in 10 without a disability

Even prior to the pandemic, Nyman and Sehter said there were clear issues with employment in this adult population. They found they were “able to get the job, but unable to keep the job” due to “inadequate social skills”.

Schools and day programs closed and access to therapy diminished. Many vital skills were lost as a result, Nyman added.

Nyman also found discrepancies with how some of these individuals were treated when it came to layoffs and goes back to the example of Winger, whose hours were cut from about 20 to four a week.

“Laying anybody off in the middle of a pandemic is horrible, but for this population it’s so much more,” Sehter said. She added how agencies that normally help with finding employment are going out of business.

Examples of developmental disabilities, according to the Centers for Disease Control and Prevention. Sehter also explained in an email how an intellectual disability is strictly based on intelligent quotient, while developmental disabilities do not necessarily only consider intelligent quotient. For example, an individual diagnosed with autism may have an above normal range of intellect, but still be developmentally delayed, Sehter wrote. (Brittany Edelmann/MEDILL)


New Initiatives

Remarkable Virtual Clubhouse

The crisis led Nyman and Sehter to make some changes of their own. In the beginning of the pandemic, they started to host virtual programming twice a week and saw the positive impact it had on families. But, the social service agency where they worked was unable to continue funding this initiative.

“We need to help these families,” Sehter said. 

Ali Nyman and Samantha Sehter provide an online video programming session through their new company Remarkable. This virtual clubhouse brings individuals together safely, from around the world, for activities and connection.  (Photo: Remarkable)

This led to quitting their jobs during the pandemic and creating their company Remarkable Disability Services. Remarkable provides unlimited access to daily programming via Zoom for individuals with an intellectual or developmental disability for a monthly fee of $99. Like having an unlimited gym membership, students can choose which sessions they want to attend.

They found most of their students attending every possible session. Families thanked them for this program saying things such as “you saved our family” and calling the program a “savior.”

These sessions provide activities all day to help prevent skill-regression, increase understanding of COVID-19, and simply provide fun and friends. Sehter and Nyman also developed a ‘zone chart’ to start each session. The students say which zone they are in, ranging from green for positive feelings, yellow for a more nervous or confused state, blue when feeling sad or sick, or red to indicate they are upset or angry.  

(Photo: Remarkable)

If a student is in the red zone, this prompts Nyman to schedule a private meeting to provide counseling and psychotherapy. About 12 out of the 40 students who are members of Remarkable meet one-on-one “because they need that extra support,” said Nyman.  

Nyman and Sehter said they didn’t start this for money. “It’s really about the impact and the friendships and the progress that these guys are making,” said Sehter.

The Centers for Disease Control and Prevention describe many factors that can contribute to risk for mental illness, among them having few friends and feelings of isolation. This program gives these individuals routine and friendship in a safe way. 

Tomatoes and cucumbers cut by employees are on display at the cafe, as well as photos of the employees. (Brittany Edelmann/MEDILL)

Friendship Café

Another initiative that kicked off in January 2020 to provides routine, friendship and employment is the Friendship Café in Fort Lauderdale at Las Olas Chabad. The café provides a life skills and employment program. This program includes education about basic life skills such as how to count money, prepare the vegetables, and greet customers. The hope is that these skills will also help the adults find employment elsewhere, while adding meaning and purpose to their lives. 

Shortly after opening, families and employees were notified that the café would have to temporarily stop the program because of the pandemic. 

“We told them we cannot be open in person because we don’t want to put the individuals in danger, but the danger is having them at home and being locked up in the house and the parents having to work from home and are unable to work from home,” Slavaticki said. 

The café reopened a few months ago and training now focuses on teaching COVID-19 safety procedures. The café will continue to follow COVID-19 guidelines to keep the employees safe. 

When those in the employment program are working at the café, Slavaticki said how amazing it is to see positive changes in their mood “and their passion and – all of the sudden- to see they’re alive.”

Brittany Edelmann is a registered nurse and health, science and environment reporter at Medill. Follow her on twitter @brittedelmann