By Laurel White, School of Education, UW-Madison
Albert had 55 pairs of sunglasses – a pair to match every conceivable outfit.
He had style, and his classmates at Marshall High School loved him for it. He also loved to dance, to show off his skills in track and field, and the Milwaukee Bucks.
“He was my pride and joy,” said Delores Sallis, Albert’s mother, her voice lit with a laugh.
But Sallis says the COVID-19 pandemic was terrible for Albert. A bacterial meningitis case when he was a toddler left him without hearing or speech and limited mobility on his left side. Albert had seizures, and during the pandemic, they got worse. He was admitted to an inpatient facility and strict pandemic guidelines kept his mother from visiting after his first week inside.
“It just ripped my guts out,” Sallis said. Albert stopped eating, eventually needing a feeding tube.
“I think he just gave up,” she said. “He just was not Albert.”
Isolation from family and loved ones, along with a forced split from routines and support systems, was part of life for everyone during the height of the COVID-19 pandemic — but those changes fell especially hard on the disability community.
A study published last year in the New England Journal of Medicine Catalyst found people with intellectual disabilities are almost six times more likely to die from COVID-19 than the general population. The study also pointed out the pandemic placed devastating limits on disabled individuals’ ability to receive necessary health care and support.
Karla Ausderau, associate professor in the occupational therapy program in the School of Education’s Department of Kinesiology, is working to shed more light on those challenges – and present some solutions.
Ausderau’s research, which is funded by a Wisconsin Partnership Program COVID-19 Response grant, is using interviews, surveys, and collaborations with organizations across Wisconsin to identify how COVID-19 affected the daily lives of people with intellectual and developmental disabilities (IDD), illuminate how nonprofits serving that community adapted during the pandemic, and create a plan for improving services delivered under such circumstances in the future.
Individuals with IDD are part of Ausderau’s research team. They make sure outreach and interactions are done in ways that work for the community. People like Sallis – who started a thriving nonprofit in Milwaukee, Parents University, that serves people with IDD and their families – provide insight on nonprofit COVID-19 response, as well as connections for one-on-one and group interviews and surveys. In all, Ausderau is partnering with 10 nonprofits.
“We’re working to be a part of communities, instead of asking things of and from them,” Ausderau said. “We want to move forward with our research in a way that’s meaningful to the diverse people of Wisconsin.”
Some of the surveys are done using something called “photovoice,” a research method that allows people to use images instead of words to convey their thoughts and opinions.
Sallis recently sat in on a small group conversation with Ausderau and a few community members.
“When they met her, they liked her,” Sallis said, confident Ausderau’s outreach is building genuine connections and getting genuine insight.
Ausderau says the stories she’s gathered so far are wide-ranging. They include challenges related to a shortage of personal care workers, who help adults continue to live independently at home, and barriers faced by individuals with high-risk health needs as community mask mandates are removed.
At the height of the pandemic, Sallis opened her office to a pair of routine-driven autistic students who insisted on getting dressed and waiting every day for a school bus that never came. In another case, she facilitated connection for isolated families by providing gift cards for in-home movie nights and virtual discussions afterward.
Sallis’ son, Albert, passed away in January 2021. He was able to come home before he passed, to be with his family.
“He had a great life,” Sallis said. He will be remembered for his dance moves and his style, and at the high school track that now bears his name.
As the world shifts back toward a semblance of what it was before the pandemic, Sallis says some of the families she works with are reclaiming their pre-pandemic routines.
“They finally escaped, and they can find themselves again,” she said. “They can find their life again.”
Ausderau’s research will continue through September 2023. The Ausderau Lab is located at the Waisman Center.
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