‘There is no life’

Due to the caregiver shortage, the once independent Karen Foxgrover now lives in a hospital

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Living at UW Health’s East Madison hospital, Karen Foxgrover doesn’t have many opportunities to socialize. But on this April afternoon, she’s made her way down to the first floor cafe where she sits with a friend who helps her take sips of coffee. Foxgrover, who has muscular dystrophy, needs someone to help her with daily tasks, but she doesn’t need to be in the hospital. She’s there now because she can’t find workers to assist her at home.

“I’ve been here for two full months and have no hope of getting out,” says Foxgrover. “The quality of life sucks. There is no life.”

Foxgrover has lived independently in downtown Madison since the early 1980s with support from a rotating crew of home health care workers who help her get in and out of bed, shower and use the restroom. She usually recruits UW-Madison students who are studying fields related to medicine and tries to train them not just in care work, but in the people skills they will need in future careers.

But since late last year, Foxgrover has been unable to secure reliable help. Sometimes the workers she has found have no experience, are not able to care for her properly, or do not show up when scheduled, leaving her stranded in bed. And now even those workers are gone.

With no in-home help available, Foxgrover says her provider agency told her to show up at a hospital for care instead. The day before Thanksgiving, she showed up at University Hospital. They found a bed for her at Meriter, where Foxgrover says she did not have access to wheelchair accessible showers or certain lift equipment. The day before Christmas, she was moved to The Bay at Belmont Health and Rehabilitation Center, a nursing home that has committed the most regulatory violations of any nursing home in the state over the last four years, according to data collected by ProPublica. After a stint there, she moved to the UW Health East Madison Hospital, where she has been since.

In the hospital, says Foxgrover, she feels she is losing her physical strength and mental sharpness in such an isolated and unstimulating environment. “My motorized wheelchair is broken. I’m spending most of my time in bed.”

Foxgrover’s experience is not unique.  The coronavirus pandemic took an already acute shortage of care workers to new heights, says Tami Jackson, a public policy analyst with the Wisconsin Board for People with Developmental Disabilities. Agencies are refusing new clients. Half the workforce turns over each year. “Now we’re left with people who have been in the community for decades ending up in facilities and places they shouldn’t be because there’s no staffing,” says Jackson.

According to a 2022 report from a coalition of Wisconsin long-term care provider associations, the vacancy rate in caregiving jobs has more than doubled since 2016, to 27.8%. And more than 18,000 people in Wisconsin had services denied or delayed due to lack of care workers.

Jackson says the shortage is so severe that otherwise healthy people who suffer an injury like a fall or auto accident are at risk of having to recover at expensive facilities rather than at home.

“It’s important for people living in Madison to recognize that this is not just an isolated issue,” says Patti Jo Becker, director of program operations for the Community Living Alliance. “It’s not something happening to someone else, it’s happening to all of us.”

“Every single person could be in this position,” adds Foxgrover.

Recently, former interim Ald. Barbara Vedder, who has advocated for people with disabilities alongside Foxgrover for years, pushed the city to address the crisis. She authored and the council passed a resolution authorizing the city to develop a comprehensive plan to address the care crisis.

One of the aims of the resolution, says Foxgrover, is to identify ways to improve benefits for the city’s care workforce, including potentially providing access to the insurance pool open to city workers.

Right now, 60% of Wisconsin care workers have no benefits, 40% have no paid time off, and workers on average make $13.53 per hour, according to recently released results from the National Core Indicators’ State of the Workforce Survey. That average wage barely beats Illinois’ $13 per hour minimum wage and is below the Twin Cities’ minimum wage of $15.19. Kwik Trip, in comparison, advertises entry-level positions starting around $15 an hour or higher throughout Wisconsin.

Becker says that while the city has limited ability to impact the hourly pay of care workers, it might be able to provide other services to help retain workers, like funding for childcare and transportation options.

While Madison has recognized the problem and taken a first policy step, Jackson says the scope of the problem likely requires a statewide response. Her organization and others are pushing state lawmakers to provide more funding to fill in expected gaps when federal emergency funding expires in 2024.

The differences between living in an institutional setting and living at home are stark for Foxgrover. Sometimes the little things stick out: At home, Foxgrover can luxuriate in the shower and have a hot cup of coffee brought to her at the end of it. She doesn’t get that chance at the hospital.

There, she’s also been separated from her cat, Phoebe, and needed a friend to arrange a visit. Afraid of the unfamiliar surroundings, Phoebe wouldn’t leave her carrier during the visit. “She doesn’t know me anymore because I’ve been gone,” says Foxgrover, overcome with emotion. “This cat has been my everything for 11 years.”

She says she has seen how the care shortage has led people with disabilities to lean more on loved ones for help, and that can put stress and wear on even the closest relationships. Foxgrover has seen the strain lead to family strife, divorce and despair.

Getting back home with a stable support system of reliable care workers will take broad action from many people and institutions, says Foxgrover, adding that the crisis could still get worse as those with disabilities and their family caretakers age along with the state’s population as a whole. “If this pisses you off,” she says, “don’t be passive about it.”