As we try to navigate the disruption sparked by COVID-19, people living with disabilities are experiencing increased barriers to care.
Before the pandemic, Kristi Scheunemann from Watertown enjoyed being in fashion shows, parades, and working three jobs.
That has all stopped.
Kristi was born with spina bifida and developed respiratory issues making her susceptible to the virus.
Kristi says her caregivers and personal protective equipment are in short supply. Some of the caregivers have gone into quarantine after they did not feel well, limiting an already hard-pressed pool of workers.
"They often do not wear masks or gowns and they also go to other clients so I don’t know what they’re being exposed to and in turn what I’m being exposed to," said Kristi.
Kristi says the feeling of isolation is hard to bear.
She and three other people living with disabilities shared their new struggles and concerns during a press conference with the Survival Coalition of Wisconsin Disability Organizations.
The coalition says more than 85,000 people in the state rely on in-home care, home health services, and other services to stay home safely. However, the pandemic is straining resources.
"They’re losing the workers that allow them to stay in their homes and stay safe and healthy. They’re also losing their connection to employment, their connection to transportation," said Beth Swedeen, Co-Chair for Survival Coalition of Wisconsin Disability Organizations.
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The coalition conducted a statewide survey of people with disabilities and older adults. Out of about 500 respondents, more than one in three said their families were providing some or all personal care instead of normally paid staff.
"It’s a huge struggle to find and keep people under normal circumstances, but now I’m worried it’s going to be even harder for me to find and keep workers because they won’t feel safe and protected," said Stacy Ellingen.
Stacy has cerebral palsy. She has a bachelor's degree in journalism and runs her own business from home.
She has physical limitations and needs help with all of her basic needs. Stacy ultimately had to move in with her parents in Fond du Lac after the pandemic took off.
"Most of my workers are students at UW Oshkosh so when the colleges canceled in-person classes for the rest of the semester my workers went home. I had no choice but to go to my parents. When I am finally able to return to my apartment I have plenty of gloves for my staff but I can’t get enough masks," said Stacy.
"I don’t know if things will ever be like they were before, but I find hope that things are slowly improving," said Stacy.
"These people can’t be forgotten. They really need to be brought into the mainstream of things that we’re thinking about and what we’re caring about going forward with improvements and bringing things back," said Kristin Kerschensteiner with the Survival Coalition of Wisconsin Disability Organizations.
The coalition notes the survey only includes responses from people who are able to access the internet, pointing out the number of people impacted is even greater.