Wisconsin family stays together with help from Medicaid

Nancy and Dan Gapinski of Glendale, Wis., remember a time when they couldn't really communicate with their own son.

"He used to not really have any kinds of conversations with us. He did a lot of echoing things that we said, and scripting from movies," Nancy Gapinski says as she and her husband wait for their son Ben's school bus to arrive. "A lot of times kids didn't know how to respond to him then, and didn't know what he was trying to say and conversations wouldn't really go anywhere."

But that's all changed. On a recent Friday afternoon, 10-year-old Ben hops off the bus, greets both his parents and starts chatting about his day.

"So what I did today was I had an extra recess today, and also I had to do two star math tests," he reports. He says he did pretty well on those tests.

When Ben was a toddler he was diagnosed with an autism spectrum disorder. He barely communicated with his parents and needed constant monitoring to stay safe.

The Gapinskis needed help. They found a therapist to work with Ben for 24 hours a week, which cost more $50,000 a year. Dan's workplace insurance paid for some of the costs, but not all.

So they turned to Medicaid. Ben's disability was severe enough – he was deemed by the state to require "an institutional level of care" — that he was eligible for Wisconsin's children's long-term care program, funded by Medicaid.

"They work with the child on basic language skills, trying to learn words, trying to do some intellectual exercises," Ben's father Dan recalls. "It eventually graduates into some back and forth conversation, and doing homework and doing things that are more like what normal kids do."

While Medicaid is best known as a health care program for poor people, more than 80 percent of its budget goes to care for the elderly, the disabled and children, according to the Kaiser Family Foundation. Only 15 percent goes to health care for able-bodied adults. The program has been growing in recent years and it now makes up almost 10 percent of federal spending. That's why it's the number one target in President Trump's proposed budget, and figures prominently in the Republican proposal to replace the Affordable Care Act. Some estimates suggest the program could be cut by more than 1 trillion dollars over 10 years.

After three years of intense therapy, Ben now goes to his local public school and works on grade level in math and English. He no longer works with his private therapist or uses Medicaid benefits.

"We just decided not to reapply," Nancy says. "The need had been met."

President Trump and Republicans in Congress have proposed massive cuts to Medicaid's budget over the next decade, and Nancy and Dan Gapinski worry that the services they used for Ben won't be there if he needs them in the future, or be there for other families. "I don't know what Ben will need in his lifetime," Nancy Gapinski says. "Our goals for him are very much like our goals for our daughter Zoe. We really want for them to be active, engaged citizens."

Ben's not the only one in the Gapinski home who has used Medicaid services. His grandmother Evelyn Benjamin is also a beneficiary.

Evelyn is 84. She's had a few falls and depends on a walker to get around. She also has heart disease and uses three different inhalers.

"They take very good care of me," Evelyn says, sipping tea in the living room surrounded by her family. "I'm very lucky to be one that can stay in my home, and know that I'm cared for."

Evelyn has health insurance through Medicare. But after her husband suffered a stroke and needed constant care, she depleted her savings and now qualifies for Medicaid as well. It helps pay for her 12 prescription medications and, through a Medicaid-funded program called IRIS, she gets in-home help.

Wisconsin's IRIS program is an example of how states tailor Medicaid to their own needs. It gives beneficiaries a budget to use for the services they need, and it allows people to hire whoever they want.

So Evelyn hired her daughter, Nancy, who gave up her full-time career to care for her mother and son. She works part-time from home, and supplements that income with $11.50 an hour for 20 hours a week caring for her mother. She says it's helped keep them out of bankruptcy. And her hourly rate is a fraction of the going rate for such services from an agency. According to a 2015 study by Genworth, home health aides and homemaker services in Milwaukee cost an average of about $22 an hour.

"It's just a big, big help for not only me, but for my daughter who worries about me constantly," Evelyn says.

Nancy Gapinski worries that help may disappear under the proposed budget cuts. That's because the services her family uses are considered optional under the Medicaid law. The program is required to pay for doctor visits, hospital care and even nursing home care. But in-home support services that Evelyn uses and therapies like those Ben received aren't.

Dan Gapinski says his children love having their grandmother around. When they have nightmares they climb into her bed and they giggle with her in the living room.

"I don't think we, as a society, appreciate the value of that," he says. "There's a lot of talk about entitlements and how that's become a bit of dirty word. We don't take the satisfaction in having made a greater society by making these kinds of situations possible."

The day I visited the Gapinskis, Ben was excited to go on a sleepover at his aunt's house. He was packing up pajamas, his Nintendo DS game, some comic books and Minecraft books.

As he heads for the door, his grandmother calls out for a hug.

"Give my love to Aunt Susie OK?" she says, while reaching her arms around Ben.

"Yeah, I'll give your heart to Aunt Susie," he replies with a laugh. Copyright 2019 NPR. To see more, visit https://www.npr.org.