Sarah and Karen drinking

Sarah Rosenthal, a UW-Madison student and personal care worker, helps Karen Foxgrover eat, drink and take medication, along with bathing, toileting and other daily activities. Foxgrover said a 4 percent increase in the Medicaid reimbursement rate for personal care is better than nothing but won't solve the personal care workforce shortage. Looking on is Morgan Miller, a UW-Madison student who is training to work for Foxgrover.

AMBER ARNOLD, STATE JOURNAL

Karen Foxgrover, who uses a wheelchair and lives on her own, relies on personal-care workers to help her get up, bathe, dress, eat, use the bathroom and go to bed.

Five workers, all UW-Madison students, fill four shifts seven days a week. Four of them will leave soon, so Foxgrover is training other people to replace them.

Finding help is a never-ending struggle that sometimes leads her to go to the Dane County Farmer’s Market and hand out her card.

“I don’t like feeling that needy, but sometimes there’s no other way to do it,” said Foxgrover, of Madison, who has spinal muscular atrophy, a genetic disease that weakens muscles.

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Sarah leaving

Sarah Rosenthal, leaving Karen Foxgrover's Madison apartment after helping her eat lunch, has been a personal care worker for Foxgrover for a year. She hopes to start nursing school in the fall, which likely will make it difficult for her to continue the job. Morgan Miller, behind Foxgrover, is training to replace her. 

Gov. Scott Walker’s 2017-2019 budget calls for a 4 percent increase in the Medicaid reimbursement rate for personal care. That might help ease a shortage of workers but won’t make the problem go away, say those who use or provide personal care.

“We’re pleased the administration has recognized that there is a crisis,” said Todd Costello, executive director of the Community Living Alliance, a personal-care agency in Madison, and legislative co-chairperson of the Wisconsin Personal Services Association. “However, it won’t really cover the fact that there hasn’t been an increase in nearly 10 years.”

Under Walker’s budget, which the state Legislature will review in the coming months, the hourly rate that agencies receive to pay workers and cover overhead will increase from $16.08 to $16.40 the first year and to $16.72 the second year. The cost of the increase is $15 million over two years, $6.2 million of it being state money.

The last rate hike, of 24 cents an hour, was in 2008.

Personal-care workers make about $10.75 an hour, the personal services association says. When billing, scheduling, health insurance, worker’s compensation insurance and other expenses are factored in, it costs $18.59 an hour to provide the care, the group says.

“We need more like a 15 percent increase to keep the doors open,” said Michael Blumenfeld, a consultant for the group.

A plan approved in the 2015-17 budget calls for independent assessments of how much personal care people need, rather than letting nurses employed by agencies determine the amounts. The independent assessments, to be conducted by Liberty Healthcare Corp., are scheduled to begin in June.

By reducing fraud, the assessments should save $19 million over two years, the state says. But the Liberty contract cost several million dollars more than expected, and the Legislative Fiscal Bureau said the state might not achieve its anticipated savings because personal-care spending has declined in recent years.

If the assessments yield savings, the money should be used to further increase the reimbursement rate, Blumenfeld said.

Some 70 percent of personal-care agencies say they don’t have enough workers to staff all of the hours clients have been authorized by the state to receive, according to the personal services association. The need for the workers will grow as the population ages, the state Department of Workforce Development says.

“Personal care is at the heart of the long-term care system in Wisconsin,” said Jean Rumachik, the association’s other legislative co-chairperson. “Unless something is done to keep workers, to train workers, this crisis will go on. We won’t be able to keep people at home, and it will cost the whole system more money.”

A survey last year of more than 500 people who use personal care found 85 percent don’t have enough workers to fill all of their shifts and 43 percent can’t find workers seven or more times a month.

The workers “do very hard work of a personal nature, and it depends on them having a high level of skill around interpersonal communication,” said Beth Swedeen, co-chairperson of the Survival Coalition of Wisconsin Disability Organizations, which conducted the survey.

“But they are making very low wages, so the turnover is very high,” Swedeen said.

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John Donnelly (copy)

John Donnelly, who has cerebral palsy and is authorized to have 25 hours of personal care a week, said he can't always find enough workers to fill the slots. He is shown in this file photo from 2015.

John Donnelly, a Madison resident with cerebral palsy, said it’s become harder in recent years to find workers. Sometimes it takes months to schedule his allotted hours.

“It’s always kind of a crapshoot,” he said.

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Barbara lying in bed (copy)

Barbara Vedder, whose body is mostly paralyzed from a car accident, is shown with personal care worker Jasmine Hannah in this 2015 photo. A 4 percent increase in the Medicaid reimbursement rate for personal care, proposed in Gov. Scott Walker's 2017-19 budget, is a "step in the right direction, but it's a baby step," Vedder said. "It has to happen on a regular basis for it to make any difference."

Barbara Vedder, of Madison, who is mostly paralyzed from a car crash, said she is constantly working to find enough people to provide her with nine hours of personal care a day.

“I can’t do without it,” said Vedder, a former Madison City Council member and Dane County supervisor. “If someone isn’t there in the morning for me, I don’t get up. If someone’s not there at night for me, I don’t go to bed.”

Foxgrover said she likes having students who plan to go into health care careers work for her because they are enthusiastic and reliable, and she can teach them how to interact with people with disabilities.

But they don’t stay long. “That’s why I’m in such a tailspin to get people hired and trained,” she said.

Foxgrover said the state’s 4 percent rate hike “is not going to give somebody who works for me now the impetus to stay longer.”

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David Wahlberg is the health and medicine reporter for the Wisconsin State Journal.