MADISON, Wis. — Born with cerebral palsy, Adrienne Murdent, 59, uses a wheelchair and relies on aides to help her get up, go to the bathroom, bathe, prepare meals and clean her condo on Madison’s Far West Side.

Some of the aides are good but many are unreliable, coming late, leaving early or failing to perform basic tasks, Murdent said. At times, she spends hours waiting to go the bathroom before they arrive.

“I try my best before I get upset, but if I have to get indignant, that’s what I do,” she said.

Home care for people with disabilities, long a challenge, is becoming more difficult, with demand for the care growing, the COVID-19 pandemic worsening the workforce shortage and wages failing to keep up with inflation and other types of jobs, recent reports say.

“As a result, long-term care employers are facing acute recruitment and retention challenges as they compete with employers from other industries that can offer higher wages in a fiercely competitive labor market,” said a report in September from PHI, a New York-based organization that advocates for the industry.

The median hourly wage for home care workers in Wisconsin was $13.65 in 2021, up 16% from $11.80 in 2011, according to PHI.

A report in June from the Economic Policy Institute in Washington, D.C., said home care workers in Wisconsin should be paid a living wage of $21.96 an hour. The report called for a federal increase in Medicaid funds, which pays for most of the care.

“In every state, an undervalued home health care workforce — overwhelmingly composed of women, workers of color, and immigrants — is paid extremely low wages to perform vital work,” the EPI report said.

More than 1 million additional home care workers will be needed by 2029, on top of the 2.3 million who now support people with disabilities and older adults, the report said.

The home care worker shortage worsened during the pandemic, and the workers say their job is mentally demanding, physically taxing and marked by uncertainty, according to reports last year by the Kaiser Family Foundation.

Strain on families

In Wisconsin, the shortage of paid home care workers is causing an “unsustainable” strain on unpaid family caregivers, according to a survey released in October by the Survival Coalition of Wisconsin Disability Organizations.

Family members provide 80% of the care for people with disabilities and older adults, with 60% of the family members spending more than 40 hours a week providing care, according to the survey of nearly 500 caregivers.

About 20% of the family caregivers are working less at their regular jobs and about 40% have left the workforce because of caregiving duties, the survey found.

Wisconsin’s 2021-23 budget provided an additional $104 million for caregivers. In summer 2021, there was a $54 million rate increase in Family Care, the main Medicaid program that pays for home care.

An additional 5% rate increase started in January, funded by the federal COVID-19 stimulus bill passed last year. That money continues until March 2024, and the state Department of Health Services is requesting money in the 2023-2025 state budget to maintain the increase, spokesperson Jennifer Miller said.

With the federal money, DHS recently also awarded $12 million in grants to 43 organizations to improve home care and related services.

DHS is also partnering with UW-Green Bay to create the state’s first certification program for home care and other direct care workers, offering free training and a $500 bonus upon completion and obtaining a job.

By 2024, DHS plans to set minimum rates the managed care organizations, or MCOs, that run Family Care must pay to service providers, which could boost wages. The move is among recommendations in a 2020 report by the Governor’s Task Force on Caregiving.

The efforts are laudable, but the problem requires even more attention, advocates say.

“We appreciate everything the legislature, governor and the Department of Health Services has done to help with this crisis but unfortunately, more must be done,” Mike Pochowski, CEO of the Wisconsin Assisted Living Association, said in releasing a report in August showing 27.8% of long-term care jobs are vacant, up from 23.8% two years ago.

Meanwhile, for-profit companies outside of Wisconsin plan to buy two of the four local nonprofits that serve as Family Care MCOs, which advocates fear could lead to service cuts.

Molina Healthcare, based in Long Beach, Calif., plans to acquire My Choice Wisconsin, of Wauwatosa, which has a sizable presence in Dane County. Humana, based in Louisville, Ky., plans to purchase Inclusa, of Stevens Point.

Molina and Humana in September told the Wisconsin State Journal they would maintain high-quality services. The companies have not yet filed plans for the transactions with the state Office of the Commissioner of Insurance, OCI spokesperson Sara Smith said.

‘Always searching’

Matt Ford, 57, who lives in the town of Middleton, is paralyzed in all four limbs from a diving accident in 1987. He gets home care through a self-directed alternative to Family Care called IRIS, which stands for Include, Respect, I Self-Direct.

Ford often hires college students for the work, but “it’s become more difficult” in recent years, and the pandemic “just accelerated all of that,” he said. “You feel like you’re always searching and you’re always training.”

If an aide is late or can’t show up, Ford’s father, who lives with him, tries to help. But his dad is 79 and has poor eyesight and limited strength. “He can’t take over my cares,” Ford said.

Even people who make too much money to be on Medicaid, such as Jake Westerhof, are finding it increasingly difficult to get home care. He posts ads online for aides but gets fewer responses than he used to, he said.

Westerhof, 53, of McFarland, has been paralyzed from the chest down following a motorcycle crash in 2006. An attorney, he worked for many years at DeWitt Law Firm and now owns and manages townhouses in McFarland and Verona.

He used to pay $4,000 a month for someone to live with him and provide care around the clock. This fall, after his previous caregivers moved back to Chicago, he found he had to offer $6,500 a month, on top of free room and board.

“Supply and demand has driven the price up,” he said.

Westerhof said he has had “quite a few bad experiences,” with some aides stealing possessions and medications. “Finding people who are trustworthy and reliable is a real challenge. Some don’t show up, and then I’m stuck alone trying to figure out what to do.”

He said the Community Living Assistance Services and Supports, or CLASS, Act, passed as part of the Affordable Care Act in 2010 but then repealed, should be resurrected to help people like him pay for long-term care.

Murdent gets home care through Family Care Partnership, an offshoot of the Medicaid program, with her services administered by My Choice Wisconsin.

She is scheduled to have aides every morning and evening, with three or four people making up the shifts each week. But with some not showing up on time or quitting, turnover is significant: 26 different people cared for her in August and September, said Terri Johnson, a friend who advocates for Murdent.

Some aides don’t clean dishes or do laundry as described in Murdent’s care plan, Johnson said. Some don’t make sure Murdent has essentials — her medications, her eye glasses, her phone, her life support wrist button — when they leave, despite a sign with such instructions hanging on the door.

“They don’t read it,” Johnson said. “I show up … and she doesn’t have her meds, she doesn’t have her glasses. The place isn’t vacuumed.”

Murdent and Johnson said My Choice policies can be inflexible and cause delays in obtaining equipment or assistance. When a lift that transfers Murdent from her bed to her wheelchair and to the toilet broke last year, it took four months to get a new one, said Johnson, who paid out of pocket to rent one during the wait.

Like many people with disabilities, Murdent worked — with support, at the Madison homeless services agency Porchlight — before precautions early in the pandemic took away the opportunity. Early this year, she wanted to work again, but her previous agency had no openings. Johnson found another agency with an opening, but My Choice said the agency wasn’t in its network. By the time My Choice said its agencies didn’t have openings, the slot Johnson had found was filled, she said.

“She doesn’t have a way to get out and get distracted by something else,” Johnson said.

Betsy Van Heesch, chief operations officer for My Choice Wisconsin, said Murdent and her aides had access to a manual lift before the arrival of the new electric lift, which was delayed by the need to get approval from Murdent’s doctor and supply chain problems. Van Heesch said the employment agency Johnson found cost more than those in My Choice’s network and Murdent decided she no longer wanted a community job.

“We believe there are a lot of flexibilities built in,” Van Heesch said. The caregiving shortage “impacts all levels of care, including home care,” she said. “We’re competing with the Kwik Trips of the world.”

Johnson said Murdent’s manual lift leaked hydraulic fluid and was unsafe. She said Murdent has sought work since February. Murdent, who struggles to speak at times, indicated in an interview with the Wisconsin State Journal that she wants a job. Van Heesch later confirmed Murdent is pursuing a job.

Chad Weis, general manager for the Madison office of Home Instead, through which My Choice contracts for Murdent’s home care aides, said the agency offers training, scholarships and consistent pay.

“When we begin service with a new client, it can take some time to find the right mix of available (aides) who are a good match for that client’s needs,” Weis said.

Timeca Echols, a Home Instead aide who has been working with Murdent since July, does an excellent job, Murdent and Johnson said.

Echols, who also works in patient registration at UW Health, said home care “is hard work … and they don’t want to pay (well).”

But she likes helping others, she said.

“It’s rewarding,” she said. “It makes me feel good to give back. I feel like, one day, it could be me who needs the help.”

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