Future holds hope, fear for disability providers and families

Kay Soltz says her son repeats the names of caregivers who have moved on to other jobs.

“Christi gone, Sarah gone, Jolinda gone,” Zachary Soltz, 35, repeats.

Zach Soltz has Fragile X syndrome, resulting in intellectual disability, difficulties communicating and social problems. He needs 24-hour care. He remembers people who have left years ago, his mother says, people who had become his friends.

“And then he loses them and he’ll never see them again,” Soltz says.

She can’t be sure that every person who left did so because of low pay, but she’s sure it can’t help.

Caregivers like Zach’s make an average of about $8 an hour, according to the Advocates in Communities Team of South Central Kansas, a group of organizations and individuals that advocate for people with intellectual and developmental disabilities.

The state hasn’t increased its rates to providers of home- and community-based services since 2008.

Family members of people with disabilities say this leads to high turnover rates for caregivers and a decrease in quality of life for their loved ones. Providers living off that pay say it’s often a struggle to make ends meet.

As of July, nearly 9,000 people with intellectual and developmental disabilities were eligible for home- and community-based services. Another 3,500 were on the waiting list, according to state records.

Kevin Fish, chairman of ACT and executive director of the Arc of Sedgwick County, said the tasks done by these community providers can include working on daily living skills for someone with intellectual and developmental disabilities, helping them use the bathroom, taking them grocery shopping or monitoring their diet.

“They’re really responsible to this person’s life,” Fish said. “When there’s a constant turnover in individuals, they don’t really get to know the person very well.”

For the first time in years, a Kansas Senate bill, SB 173, has some saying they see a step forward. The bill would offer a 5 percent rate increase for providers of home- and community-based services. It received a committee hearing earlier this month.

At the same time, the proposed Republican health-care replacement bill has left families of people with disabilities and providers afraid that an increase in pay will be irrelevant if they lose funding for programs altogether.

The clients

Today, Zach Soltz attends a day program for people with disabilities that has about one staff member for every eight clients. But his mother says it doesn’t always work out that way. Often, one client needs individual attention for something like help with the restroom, decreasing the caregiver-to-client ratio with the others.

In Zach’s first day program, which he started at age 22, the ratio was 1 to 2.

“This low ratio made it possible to work on building both life skills and job skills,” Kay Soltz wrote in testimony in support of SB 173. “The clients planned their lunch menus for the week, went grocery shopping, prepared their lunches and cleaned up afterward. They did volunteer work in the community including collating a church newsletter and making River Festival buttons.”

Later, Zach moved to a day program with a 1 to 4 ratio. There, they were out in the community every day, volunteering at the Humane Society and swimming at the YMCA. After six months, the program closed because of lack of funding.

In Zach’s current program, there aren’t enough staff members to take the clients into the community to do volunteer efforts or to teach life skills, Kay Soltz said.

“Now they never go swimming,” she wrote. “Zachary’s activities in the community appear to be delivering Meals on Wheels once a week, occasionally bowling and eating out.”

And staff turnover is its own story. When a new person arrives, it can take a long time for Zach to communicate with them. Zach also is attached to his routines, which a new caregiver doesn’t always understand.

“I’m a really big believer that everyone can contribute to the community, but you have to have the right supports to do that,” Kay Soltz said.

And she knows the job isn’t easy. The people who work with her son and others have to ensure the safety of the clients, sometimes help them bathe or take care of medications.

“I wouldn’t do that for $8 an hour,” she said.

The workers

But Christopher Fleet says he’d do his job for free.

That’s not to say it would be easy. Fleet, a work trainer at Starkey, leads a crew of eight clients with disabilities in work such as packaging, cutting material, shredding documents and putting together dental kits.

He makes about $9.50 an hour. Until recently, it was his third job. Now it is his second.

“Yeah, we can make it, but if it was my only job, boy, it would be even tighter,” Fleet said. “It would take a lot of attention and really making decisions, what are the essentials of life.”

If he lost his other job, working as a pastor – not always a regular source of income, since his check comes after the church’s bills are paid – he wonders what he would have to do. He and his wife, who takes care of church business and repairs pianos, could do without satellite TV, he says. They could try to use internet at the library, he supposes. Cutting back on transportation would be difficult, since he often drives for his ministry.

Nonetheless, he loves the job at Starkey.

“I’m here for the people,” Fleet said. “Every day my attention is on my guys, my crew and some of the burdens they’re going through. I told my boss, ‘I’d come here every day even if you didn’t pay me.’ She didn’t believe me.”

Kelsey Koch and Brindi Stables are other employees at Starkey. The two are job coaches, helping clients find work in the community and offering followup support. Stables also has marketing duties.

They make more money than Fleet – and more, they know, than many others at Starkey. They also know that at $11.10 an hour for Koch and $12 an hour for Stables, they couldn’t get by without the incomes of their significant others.

“I’m fortunate enough to have a husband that works at Spirit, so I have that as my backup plan, but I’ve told my supervisor time and time again, if something were to happen to my husband or we were to separate, it would be me and my 3-year-old son,” Stables said. “There would be no way I could continue to work here.”

Stables, Koch and Fish said they see a lot of turnover. Not all of it is because of pay, they say, but they think some people have to leave to find better-paying work.

The hourly living wage in Sedgwick County for one adult is $9.40, according to a calculator from the Massachusetts Institute of Technology. For one adult and one child, it is $21.06.

The average made by most community providers – $8 an hour – isn’t far off from the hourly pay for a McDonald’s employee, and it’s less than the average hourly pay for a Wal-Mart employee in Kansas.

An uncertain future

Allison Lemons knows that a 5 percent increase in pay for providers would benefit her brother, who lives in a group home and receives day services. Her brother, 65, has a dual diagnosis of cerebral palsy and depression.

“But if there are no group homes operating, it’s a moot point,” Lemons said. “Caps on Medicaid spending, which is what the Republicans are proposing, would be disastrous for people like him and many people on Medicaid, because they’re getting older.”

The American Health Care Act, the Republican-proposed replacement for the Affordable Care Act, would convert federal Medicaid funding to a per capita allotment, limiting growth starting in 2020 using 2016 as a base year.

Fish said it seems as if the proposal would allow states to choose how to use a block grant but that it’s unclear how states would handle it.

“If we start seeing cuts to that funding coming to the states, no matter what they’re wanting to do with reimbursement rates, we’re going to see a definite cutback to what’s going to be offered to families,” Fish said. “By having a cap, you’re not providing any room for anybody new to access service. … Could the state put some more money into our services because they have some flexibility? It’s possible, but it’s not overly likely. We just haven’t been a major priority.”

Yet Fish said that at the state level, he’s feeling hopeful for the first time in a long time. The Kansas Supreme Court ruling that school funding is inadequate may provide another barrier to increasing funding to people with disabilities, Fish said, but he thinks the supporters of a rate increase were well received by the Senate Ways and Means Committee.

“There’s a different feel in Topeka right now,” Fish said. “I think in part there are some new faces there; I think our message we’ve been bringing year after year is starting to resonate with some people.”

Kay Soltz, too, hopes for a pay increase but isn’t optimistic.

When she thinks about her son spending his time in day services where he wanders around instead of swimming or volunteering and where there is one staff member for every eight clients, she imagines things will be worse under a new federal health plan.

“What’s being proposed right now, it will just change everything, it will decimate Medicaid and KanCare as we know it,” Soltz said. “I’m worried there will be no money for home- and community-based services, or it will be so limited that we’ll be lucky if they have the buildings open, and we won’t be talking about one and eight, we’ll be talking about one and 15.”

This story was originally published March 20, 2017 at 9:08 PM with the headline "Future holds hope, fear for disability providers and families."