RACINE COUNTY — For those who are paid to care for the physically or developmentally disabled and the elderly in their Racine County homes, the personal care worker industry across the state is imploding and those they serve are suffering from the ramifications, according to those who work in the industry and advocates.
Personal care workers include those who provide in-home care for people in need as well as those who staff group homes.
Carol Wolf, human resources director for Society's Assets, a Racine-based personal care worker agency, said the industry is in "crisis."
"People need to be scared with this situation because it's crying wolf until there is blood on the streets," Wolf said. "It's coming. We're right on the threshold of that happening."
While the Bureau of Labor Statistics projects employment for personal care workers is expected to grow by 49 percent over the next five years, nearly a quarter of the agencies that provide the workers have gone out of business in Wisconsin in the last two years, according to figures from Society's Assets.
Raymond residents Katie and Tom Hansen depend on personal care workers to help care for their 13-year-old daughter Olivia, who has severe non-verbal autism, which makes her incontinent.
"She feels trapped, a lot of times, in her body because it doesn't do what she wants it to," Katie Hansen said.
Hansen said personal care workers help get Olivia to the bathroom, with bathing and with the 24-hour supervision needed for a child with sleep problems. They also help her with activities that challenge her disabilities and create personal growth, which is essential for her development.
"If we can have a couple hours where we can have someone who we can rely on with the proper training, we can do those kind of things we need to do to survive," Hansen said. "We're going to be doing this the rest of our lives and we need the support so we can make it."
The highly state-regulated personal care worker industry has seen reimbursement for those services dry up over the last eight years, along with the number of workers.
Dan Idzikowski, executive director of Disability Rights Wisconsin, the state’s designated protection and advocacy agency for people with disabilities, said the problem with group homes is well known in the industry.
"We've heard concerns expressed by individuals throughout the state, not just Racine, that in group home settings there can be a lack of training, high turnover and a lack of attention to the individual residents' ability to exercise their personal choices, in terms of interacting in the community," Idzikowski said.
In November the Madison-based Survival Coalition of Wisconsin Disability Organizations released a survey of 500 people who use personal care workers and found 85 percent didn't have enough workers to fill all of their shifts. And 43 percent of them said workers missed seven or more shifts in the last month.
"As a result, we are hearing reports of people going to nursing homes or hospitals with health concerns that could have been prevented," said Beth Swedeen, Survival Coalition co-chairperson.
Under tight regulation by the state, agencies who provide personal care workers are only reimbursed an average of $10.75 an hour and the workers themselves make an average of $9 to $10 an hour, according to the Wisconsin Personal Services Association. With their wages, operating costs, overhead and supplies, it costs the industry an average of $18.59 per hour to provide the care.
"We don't pay them enough," said Luann Simpson, who used to visit group homes as a former program director for the National Alliance on Mental Illness in Racine.
"In some places we're competing with people taking care of human beings versus flipping burgers somewhere. If we want to increase quality of care, we need to increase what we're reimbursing people to do this very important work. It has been a growing problem over time," Simpson said.
According to Amy Mlot, public relations and program development director for Society's Assets, their average consumer needs three to four hours a day for essential service in their homes. The cost to the average nursing home is $274 a day.
"What's going to happen is providers are going to continue to close and those people are going to be forced into environments that they don't want to be," Mlot said. "Which is going to cost Medicaid four times what it is costing them right now."
Gov. Scott Walker’s 2017-2019 budget calls for a 4 percent increase in the Medicaid reimbursement rate for personal care, but the industry needs 15 percent to break even to provide this service, according to advocates. It's the first rate increase proposed since 2008.
The study showed 70 percent of personal-care agencies said they don’t have enough workers to staff the hours approved by Medicaid.
"We're not used to saying ‘no’ to anybody who calls us for services," Wolf said, "particularly in the rural areas we cannot find the caregivers to provide the services."
The cities aren't much better. Racine resident Gilbert Medina cares for four adults with disabilities at a group home on Sovereign Drive in Racine. When there is a scheduling issue with co-workers, he'll double up and care for seven to eight individuals for a 12-hour shift, he said.
"It's hard to get good help. People don't have the stomach for it. We have big turnaround especially on the weekends. No one wants to work weekends," Medina said.
Medina helps them with their daily chores, prepares lunch and dinner and cleans the house regularly. He also helps them with things like helping them go to the bathroom and bathe.
"I have people in the house I have a connection with," Medina said. "There is one man I was introduced to who could not even put a belt on. I worked with him. And now he can do it himself. He couldn't give himself a bath, but now he can."
For Medina, his personal mission outweighs the long hours, low pay, no benefits and staffing woes.
"I had a brother who was disabled. He passed away three years ago. There are a couple of clients that remind me of my brother," Medina said. "I feel like am honoring them with my work, but there are times that I get stressed out."
And the parents of those at-risk individuals are stressed out, too.
"These people are so important; they need a wage to support that because the burnout ... things are going to get bad and more people will be in institutions and that's more expense for everyone," Hansen said. "These helpers are keeping our lives together."
This article was corrected to reflect the average hourly wage of a personal care worker.