Advocates seek significant pay boost in state budget for workers who provide in-home care
Advocates for the elderly and people with disabilities are looking to the state budget now taking shape in the Legislature’s Joint Finance Committee to boost pay for personal care workers in Wisconsin in hopes of alleviating a chronic shortage that has stranded many people and families needing care.
“This is the time for an investment, a substantial investment in this workforce,” said Patti Becker, co-chair of the Survival Coalition of Wisconsin Disability Organizations, in an online news conference last week. “We are once again at a crossroads where Wisconsin can choose to invest in this, or in something else.”
Wisconsin has a series of programs that use Medicaid dollars to help people who likely would otherwise have to live in a nursing home remain in the community, living on their own or with parents or other relatives. Managed care organizations coordinate services delivered through Family Care and allied programs. IRIS enables people to directly coordinate their own care, selecting providers for the services they need.
For people with physical or mental disabilities, personal care workers who can come to their home through these programs have been critical to allow them to live more independently and stay out of institutions.
Over the last several years it’s been getting harder for agencies and individuals to find enough care workers, but the COVID-19 pandemic escalated the problem to crisis levels.
As hiring care workers has become more and more difficult, “lots of people are reporting an inability to do common daily tasks that most of us without disabilities don’t think about, like eating, toileting, dressing, brushing teeth,” said Tami Jackson, the public policy analyst and legislative liaison for the Wisconsin Board for People with Developmental Disabilities.
Andy Thain, who lives in the Clark County city of Thorp, has cerebral palsy and complex medical needs and needs extensive help. He said he’s been approved to get nearly 40 hours a week of personal care under the IRIS program, through which he lines up professional workers to assist him with his care.
“More times than I can count, I am required to get by with less than what I need, or have unpaid caregivers or family fill in because I just can’t get people to cover the shifts,” Thain said. “Weekends are exceptionally hard.”
A Survival Coalition survey of 300 Wisconsin residents, including people with disabilities, family members and care workers, found that anxiety and stress have skyrocketed for all three groups as the difficulty of finding or keeping care workers has soared.
“The biggest jump [was in] the number of people who are saying, ‘I am worried that I will be forced out of my home, not because I can’t live there independently, but because I can’t get the workers to support me at the level I need,’” Jackson said. “People with disabilities and older adults who rely on care are extraordinarily worried about the care worker shortage and what it means for their futures.”
Institutions also have a worker shortage, she noted. In addition, people fear that once institutionalized they’ll be unable to return home.
“For many people with disabilities, when they’re removed from their homes, they lose not only their entire social network of support, but the opportunity to be connected to employment, their communities, their friend groups,” Jackson said.
Compensation for care workers, already low, has fallen behind other, less demanding jobs, according to advocates, who say pay increases are essential to addressing the shortfall in available workers.
“The fast food folks are paying more, the gas stations are paying more, and it’s a lot easier for folks to go in and do those jobs,” Becker said. “Even people who are interested in providing care and giving to their community are going to choose those higher paying jobs because they need to sustain their own household.”
The situation in Wisconsin is better than in some other states. Some state programs have been able to raise wages to as much as $18 an hour, while Becker said nationally the average hourly wage is under $14.
There are other obstacles besides wages, however. Many care workers don’t have health care coverage or paid time off for illness or vacation, Jackson said. Others report having to cover their own costs of getting to and from the homes of clients, or lack access to child care, a major barrier to work, she added.
The 2023-25 state budget drafted by Gov. Tony Evers includes provisions aimed at easing the crisis, and many of them remain after the Legislature’s budget committee threw out more than 500 policy items.
The Survival Coalition is calling on lawmakers to keep those provisions in the final budget. They include pay hikes for personal care workers and paid service professionals who help people in the Family Care and IRIS programs, a general increase for Family Care service providers.
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“We see a need for at least a 25% increase in the funding coming to those programs to allow for an adequate wage to compete with other entry level positions that are open in the community,” Becker said.
The coalition’s agenda also seeks increased funding for several other programs. Those include respite care so that family member who are responsible for day-to-day care of someone with a disability can have time away; the division of quality assurance at the Department of Health Services so the agency can respond to more safety complaints; increased funding for local aging and disability resource centers as well as ongoing costs for tribal aging and disability resources; and a new website and database where people can get information about long-term care supports and services.
In addition, the coalition is asking lawmakers to increase staffing to increase caregiver support services in each county and for DHS to investigate caregiver misconduct and provide background checks.
The shortage of care workers has had broader impacts.
Jeff Veers of Marshfield is the father of a 16-year-old with developmental disabilities. He and his wife have been approved to hire care workers for 20 hours a month to help, “but we just haven’t found anybody,” he said. “It leaves us doing all the care for him.”
His wife, a teacher, is in a profession “which is also facing a workforce shortage,” Veers noted. She has had to shift to a part-time schedule. She’d like to increase her work hours, he said, but she’s not able to commit to a full-time schedule because they can’t count on getting enough help caring for their son.
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