Caregiving nurse putting a bandage on a senior man’s arm in his home. (Photo courtesy of Henry Ford College.)
People who care for the elderly or for people with disabilities need help themselves, says a new report.
If being a caregiver is their job, they need much better pay and benefits. If they’re volunteers caring for family members as a labor of love, they need stronger support — including financially.
The recommendations come in the final report of the Governor’s Task Force on Caregiving. The report, “Wisconsin Caregivers in Crisis: Investing in our Future,” was released Sept. 30.
It offers 16 recommendations in all to address what those involved in caregiving say has been a longstanding crisis.
Or, perhaps, two overlapping crises. One involves unpaid family members taking care of relatives unable to care for themselves. The other involves the paid direct-care workforce — employees in home personal care and healthcare, long-term care facilities and other settings for people with disabilities or the elderly.
“Wisconsin is like many states, in that we were and are in a crisis for family caregivers and direct-care workers,” says Lisa Pugh, executive director of The Arc Wisconsin and co-chair of the task force. “And that really has been amplified by the COVID-19 pandemic.”
More than a half-million state residents provide 490 million hours every year of unpaid family care, says Pugh — perhaps a grandparent caring for a grandchild (or the other way around), adult children caring for elderly parents or in-laws, and others who care for spouses or siblings. The people receiving care might have physical or developmental disabilities, or might be elderly, perhaps with dementia — anyone who “requires significant assistance to remain healthy,” she explains.
Some in this group might have been able to pay for additional help before COVID-19, “but paid support has been unavailable during the pandemic,” Pugh says.
Gov. Tony Evers established the task force in 2019 after he took office and assigned it to address the needs of both family caregivers and paid direct-care workers. Five of the 16 recommendations focus on family caregivers, while the remaining 11 concern the direct-care workforce.
Family caregiver proposals
On the family caregiving side, the recommendations entail stronger support, financially and otherwise.
“There are a lot of family caregivers out there that are not getting any sort of a break,” says Pugh — and without relief, they could burn out or worse. That could leave the people in their care with no alternatives, or far more expensive options such as nursing homes.
The report endorses legislation introduced in the 2019-2020 Wisconsin Legislative Session that would provide an income tax credit for qualified caregiving expenses, as well as legislation mandating instruction for the caregivers of patients going home from the hospital.
The report recommends that Wisconsin reinvest in the state’s network of Aging and Disability Resource Centers (ARDCs) that provide support for family caregivers, expanding both the kinds of support they provide and the people for whom they provide it.
Some of these centers are set up only to help the caregivers of people 60 and older or who have dementia, not those who are caring for people younger than 60.
“We’re not providing a lot of resources and support for people caring for people with disabilities,” says Pugh.
Support for caregivers entails more than simply someone to come and relieve them for a few hours so the caregiver can take a break. Caregivers need other kinds of help, she says, from emotional support and peer support to better orientation to the demands of caregiving itself.
The report also proposes extending the Wisconsin Family and Medical Leave Act so that it covers people who have caregiving responsibilities for people with chronic conditions; caregivers of grandparents, grandchildren and siblings, not just parents or children; and people who may need to make use of family leave for a broader group of tasks for which caregivers might be responsible.
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Caregiving employees and employers
For the direct-care workforce and the industries employing them, the report proposes changes in how the providers of various forms of care are reimbursed by state and federal programs such as Medicaid.
“We need to fix the rate structure that [these] programs are paying to these small business providers,” Pugh says. “In many ways those rates have not been adjusted for years, or if they have been adjusted, they’re not keeping pace with market rates for providing care.”
As a result, many agencies that provide home healthcare, long-term care or other services “can’t afford to pay their workers more than $10 an hour,” she says. Employee turnover is high as even fast-food establishments or big-box retailers pay more and may provide benefits.
Many of the report’s proposals entail “improving rates paid to providers so they can pay a better wage and offer an affordable health care benefit to these workers.”
Pugh says those recommendations largely can be addressed either within the relevant state agencies such as the Department of Health Services (DHS) or with action in the state Legislature. A proposal allowing providers to get their reimbursement as an annual lump sum, so they can more easily raise wages, would need federal approval.
The report also takes up issues of equity, addressing health disparities among underserved groups as well as the particular experience of people in those groups.
“A majority of workers in this industry are people of color,” says Pugh. “And we know that family caregivers who are minority-group individuals provide more hours of care to their loved ones.”
The broad and diverse makeup of the task force — with caregivers themselves along with lawmakers from both parties and members from a broad group of organizations, including those representing industries involved in caregiving — ensured a lively discussion and stronger recommendations, says Pugh. While not everyone agreed on every item in the list, all of them were approved by a supermajority of the body, she says.
Having put the report in Evers’ hands, “the hard work starts now,” says Pugh. The task force, she adds, will be watching to see whether the governor, state agencies and the Legislature embrace its proposals by making room for them in the next state budget.
The task force holds its final session Oct. 30. After that, it will be up to state residents with a stake in the issues it addresses to take up the report’s call to action, she says.
“We hope members of the public will share their own caregiving stories with Wisconsin state legislators,” says Pugh, “to make sure they know how important this issue is for them.”
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