Pandemic Upends Lives Of People With Disabilities — And Their Caregivers

Ellingen, who lives with complications from cerebral palsy, had little choice but to do the same — moving back to her parents’ home in Fond du Lac.

Matt Ford, whose arms and legs are paralyzed, already lived with his 76-year-old father, his primary caregiver, in a specially designed house in Verona. One of Ford’s other caregivers moved into his basement for a while, since it was easier for her to quarantine there rather than come and go and risk infection and transmission of the virus to Ford.

Jason Endres asked his care workers to stay away from the home he shares with his wife Julie in Eau Claire. With masks hard to come by, Endres feared the caregivers could inadvertently spread the virus, possibly ravaging his lungs, which have been weakened by spina bifida.

The novel coronavirus, which has infected nearly 13,000 Wisconsinites, has exposed vulnerabilities in the state’s health care programs, including those designed to serve older residents and those with disabilities.

Before the pandemic, Gov. Tony Evers in 2019 created a state task force to address a chronic shortage of caregivers. A report released in February described a “crisis” in the direct care workforce, with 20,655 vacant positions in Wisconsin’s long-term care facilities and residential settings, and an average workforce vacancy rate of nearly 26%.

For residents with disabilities who need caregivers in order to live and work independently, the pandemic is adding hurdles. These visiting aides take on demanding duties and are typically paid about $12 an hour in Wisconsin.

Clients with disabilities and their caregivers must weigh how to keep each other safe during close interactions, especially as protective equipment remains scarce. Some caregivers have stuck around; others have quit. And many clients who lose their caregivers also lose independence.

Every respondent to an April survey of nearly 500 Wisconsinites with disabilities and older adults said the pandemic had disrupted their caregiving service. Wisconsin Watch conducted a dozen interviews with people with disabilities, their family members and caregivers across Wisconsin, revealing how the crisis has transformed each life in unique ways.

Help Is Hard To Find

Stacy Ellingen has navigated life from a power wheelchair since she was a child. Cerebral palsy has also affected her fine motor skills: She uses an enlarged keyboard and eye-gaze system to operate her design firm, Design Wheels, from her apartment in Oshkosh, where she lived independently before the pandemic. That computer setup is a key component of the independent life Ellingen has fought for. Now that she’s living with her parents, she doesn’t have access to that tool — or lifestyle.

“I’m not able to do much work while I’m at my parents’,” Ellingen said. During an interview over Zoom, she used an app on her phone to speak aloud. Ellingen requested interview questions in advance so she would have adequate time to enter her responses in the app.

Ellingen, who is featured in a video about assistive technology, said she could not survive long without caregivers to help her.

“Many times I’ve skipped meals, gone without using the restroom and slept in my wheelchair because I didn’t have a caregiver,” Ellingen said.

This is not the first time a lack of help has forced her to return to her parents’ home, but Ellingen worries the pandemic will wreak long-lasting damage to an already thin caregiving workforce.

A May survey of 504 providers of disability services conducted by the nonprofit Survival Coalition of Wisconsin Disability Organizations showed costs rising and revenues plunging across the industry. Nearly 20% of surveyed businesses were unsure whether they would survive the pandemic.

In an ideal world, Ellingen said, she would have six or seven caregivers to fill work shifts, but that hasn’t happened for years. Ellingen was down to just three care workers at the pandemic’s outset, including the two UW-Oshkosh students who have since left town.

University students typically make up at least half of Ellingen’s support staff; each rarely stays with her longer than a year.