Medicaid has allowed Jim Schierl to survive, then thrive

They all love him and it’s not hard to see why. He’s a real charmer and seems to know it.

The younger ones confer near-celebrity status on him. They call him Mr. Jim.

Mr. Jim is Jim Schierl and he’s a one-handed piano player in Neenah who taught himself to play by ear when he was young. At gigs across Winnebago County, from Head Start programs to senior centers to elementary schools, Jim leads sing-alongs while plinking away with his one good hand. He plays some of the classics, from well-known children’s songs to Home on the Range to Bicycle Built for Two to Christmas tunes – some 70 numbers in all. 

His fans aren’t the only ones who love what Jim does. Jim, who can be a bit of a ham in the right circumstances and in the best way, loves playing for people. 

And his folks, Katie and Dan, feel blessed that their 34-year old son, born with cerebral palsy, has something so purposeful in his life.

“Because of his vision impairment, Jim has always been very tactile and that’s how he learned to play,” Katie says. “The kids get very excited when it’s Mr. Jim Day. They call it Celebrating Abilities with Jim. This one little boy, Joey, came up one day and introduced his dad to Mr. Jim. He was so pumped.

“It’s a win-win. These kids love him. They don’t see Jim as a man in a wheelchair but as a friend.”

A meaningful life

Katie and Dan have helped create a meaningful, dignified life for their 34-year-old son and they are livid over Donald Trump’s dismissive, often contemptuous attitudes toward the disabled and deeply concerned about the elimination of Diversity, Equity and Inclusion programs (which include the disabled) as well as cuts to Medicaid and the Department of Education. 

Donald Trump infamously mocked a disabled reporter, Serge Kovaleski, during the 2016 campaign. 

“I was disgusted,” Dan Schierl says. “I remember because I put up a meme that day of Trump doing what he did next to a picture of the reporter and also of Jim, whose arm does the same thing. And you’ve got this guy running to be president and he thinks that’s okay?”

Trump has continued to treat disabled people as less than, referring to Joe Biden and Kamala Harris at various times as “mentally impaired,” a connotation that both trivializes and dehumanizes those with mental impairments.  According to his brother, Fred Trump, who has a son with intellectual and physical impairments, President Trump at a White House meeting with Fred and a group of advocates didn’t just dismiss their concerns, he openly insulted them.

“Those people,” Fred Trump said Trump told them that day, “the shape they’re in, all the expenses, maybe those kinds of people should just die.”

Both Medicaid and the Department of Education have played essential roles in giving Jim an opportunity to not only survive but thrive. Medicaid still does. Without it, Jim may not be able to keep his job coach, an essential element in his daily activities.

“His day program is funded through Medicaid,” Katie says. “So when he does volunteer work he uses a special transport for people with disabilities which is subsidized by Medicaid through Valley Transit. And he needs his job coach to go out with him and help him with his (various needs) and who helps him set up and is there to support him until his ride shows up. 

“Okay, so there’s a chance he’ll lose that.” 

Early childhood development critical

Among the many programs – almost all of which are funded through Medicaid --which helped the Shierls deal with the reality of a disabled son were Birth to 3; Forward Health; Katie Beckett (Medicaid for children with severe disabilities); IRIS (I Respect, I Self-direct); ADRC (The Aging and Disability Resource Center); and, critically, the special ed services through the Department of Education. For Jim that meant Physical, Occupational and Speech therapy when he was in school, essential tools in his early development.

Patti Clark-Stojke is a retired public school speech and language pathologist and she stresses how elastic brain and neurological functions are in the early years and says its not only a moral requirement to make sure special needs kids receive the attention they need, but makes sense financially.

"There was a national study that found 42 percent of young children served (with special ed services) did not need special ed by the time they reach kindergarten," she says. "For someone like Jim it just makes all these opportunities possible, you know, the right brain, the left brain, the music and the communication and how it all comes together.

"And Jim is just a magical human. He definitely has his significant challenges, but I think he has more gifts to share than challenges that he presents in our world. I mean, he's just such a gift to all of us."

One of Jim’s long-time job coaches, or mentors, is Lawrence Harris, who has worked with Todd Steven and Associates for nearly 30 years. Todd Stevens offers a variety of services for the disabled in the area. Harris loves his work and derives satisfaction from being able to help people like Jim.

“He gets to meet a lot of different people,” Harris says. “It’s incredible for him and it makes me personally happy that we are able to provide services that bring joy to his life.”

With Trump and Republicans in Washington threatening to cut some $880 billion from Medicaid, people like Jim could be affected. The cuts have to come from somewhere and while Katie thinks they’ll go after the so-called fraud and waste first, it won’t amount to much, she says.

“I’m not saying there isn’t any fraud,” she says. “But believe me, I know. You have to go through a lot of hoops to get on Medicaid. You take someone like Jim, whose situation isn’t going to ever change that much, we still have to go through screenings  every year. His IRIS (self-directing) consultant touches base once a month just to make certain that he should still be on it.

“Maybe they’ll find some people who aren’t eligible for health care but that won’t be close to $880 billion and so what else are they going to do? Maybe we lose some hours of caregiving. Maybe they’ll tell the state, this is your pot. Make your choices. And maybe, there goes Jim’s day program.”

Not just quality of life but survival at stake

Katie says that, while these cuts will affect people’s quality of life, she knows people whose very survival is at stake. She mentions a friend who has epilepsy and who lives in a rural area and depends on transportation to see medical professionals and to get to work. 

“But it’s worse than that,” Katie says. “She needs a drug that costs her 10 grand a month. And she says, ‘Katie, if I can’t get that, I can very likely die.’ And she started to get teary-eyed. You take away people’s health care and there will be people dying.”

Jim couldn’t have more ardent activists for parents. Katie’s big pet peeve is money in politics and she rolls her eyes at the record millions that have poured into the state supreme court race. Dan ran for state assembly in 2018 and 2020. How fierce an advocate is Katie? In 2016 she and fellow-activist Nettie McGee were arrested during a sit-in in Washington D.C. while protesting Citizens United.

So she has been raising hell with her representatives about the Medicaid cuts. But while Rep. Glenn Grothman showed up for a Town Hall before fleeing without really answering anyone’s questions, Sen. Ron Johnson has remained silent and even used deflection to avoid addressing Medicaid concerns.

Katie, Dan and Jim were in Oshkosh several weeks ago protesting with several dozen others in front of Johnson’s office. Johnson wasn’t there but his staff refused the protesters entry. Johnson later put out a statement suggesting he feared for his staff’s safety though there were no threats issued; the protesters behaved civilly; and several of his staff walked in and out of the building.

At a telephone town hall later, Katie was shot down by Johnson when she tried to ask about Johnson’s misrepresentation of the rally. 

“I was livid,” she says. “We weren’t in the streets, we were on a public sidewalk. And then someone called a cop. And I thought, if you’re truly afraid of us, why would you send staff out before and after?”

Dan asked his state senator, Rachael Cabral-Guevara, about the Medicaid cuts but she denied there was anything in the works and assured him she’d let him know if she heard anything. On Monday they were to meet with their state rep, Nate Gustafson about the issue, but he cancelled at the last minute. Calls and emails to his office went unanswered.

Wisconsin receives 60 percent of its Medicaid funding from the federal government. The question is, will the state make up the difference for the lost federal dollars.

It’s frustrating, Katie and Dan say, because any loss of Medicaid funding will hurt a lot of people.

“Losing even two to three percent of the funding could just be devastating,” Katie says.

Clark-Stojke says it's a clear moral issue.

"Why wouldn't you want to help a child learn skills so they can be happy and successful?" she asks.