Gladys Walker’s 5-year-old son was coughing, lethargic and feverish over a three-week period in March and early April, but the family struggled to get him medical attention.
The Walker family lives in Nekoosa. Even when her son’s fever spiked to 107 degrees, Walker says, an area clinic denied her request to bring him in to be tested for COVID-19: “They didn’t want him to be exposed to anyone else.”
Her son is nonverbal and has been identified as having autism. He has since recovered, but with school closed, his parents now must fill in for the school services he has been missing, including occupational therapy and behavioral therapy. “We don’t know if we’re doing it right,” says Walker.
The challenges her family has faced are one example of the added impact that COVID-19 has had on the community of people with disabilities. On Thursday, April 23, the Survival Coalition, made up of more than 30 Wisconsin groups that advocate for people with disabilities, drew attention to those challenges with an online news conference that included Walker and other people who themselves have disabilities or are advocates for people who do.
The coalition released results of an online survey completed by about 500 state residents with disabilities who are in the organization’s network. Although not a scientific sample, the survey covered about 80% of Wisconsin counties, said Lisa Pugh, a Survival Coalition co-chair.
Of people responding to the survey, 40% said they fear that, if they are hospitalized with COVID-19, they might be excluded from certain treatments such as a ventilator because of their disability or their age.
Families are providing “some or all daily personal care support instead of their normal paid staff” for 37% of the survey respondents. And looking ahead over the next two weeks, survey participants reported they were “very” or “extremely” concerned that they might not get help in a medical emergency, and would not know what to do in that event. They also worried that they would lose care workers and lose routine care necessary for their health.
Even with those results, the survey sample is almost certainly skewed toward those people with disabilities who have internet access and extensive support, said Kristin M. Kerschensteiner, another Survival Coalition co-chair — missing the most isolated and least-supported.
Even as people have reported being denied tests, however, state health officials said Thursday that providers across the state have been told that they should test anyone with symptoms that could relate to COVID-19. More than 40 labs around the state are now conducting tests, according to the Wisconsin Department of Health Services (DHS).
That’s an expansion from the department’s initial restrictions on who should be tested, which was a result of limited testing supplies.
“We are encouraging providers to test anyone with symptoms, and we do have the testing capacity to allow that to be the case,” said Andrea Palm, DHS secretary-designee, at a media briefing on Wisconsin’s COVID-19 work.
She said the state is also working to expand the supply of testing materials and to push those out to local communities so they can expand testing, something she said “is necessary to understand the prevalence of this disease all around this state.”
While COVID-19 has disrupted the lives of virtually everyone, that has happened even more drastically for people with disabilities, who are already vulnerable and more likely to be isolated in everyday circumstances, said Kristi Scheunemann, who was born with spina bifida and must use a wheelchair full time.
Scheunemann has respiratory problems and pulmonary hypertension, both of which heighten her risk for COVID-19. She needs help from caregivers daily, but they are in the midst of a 14-day self-isolation after feeling like they might be ill with the disease.
When caregivers do show up, “they often do not wear masks or gowns,” she said. “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.”
Jason Endres of Eau Claire and his wife both use wheelchairs and have depended on care workers to help with many of their daily activities, but none have come to help them over the last six weeks, for fear that they might be exposed to COVID-19 and because they lack personal protective equipment (PPE).
Care workers don’t have the priority that healthcare workers and first responders have for either COVID-19 testing or for PPE, Pugh noted, and they are often paid low wages without health insurance coverage.
“We can’t get any personal care to help with showering and help us get dressed,” Endres said. “We are fortunate that we can get by without much help right now.”
Endres called on elected officials to take action to ensure care workers have what they need to feel safe on the job.
“Help us make workers feel they can come into our home and be protected,” he said.