Quad Carl puts disability rights in the spotlight with wheelchair journey from Neenah to Madison

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Disability rights advocate Carl Schulze, right, meets Stacie Prochaska, of Arena, on Friday in Madison. Prochaska and Schulze stayed relatively close on their way to the Capitol, setting a pleasant pace for supporters traveling with them.

ANNA HANSEN

At noon on Friday, Carl Schulze put a hand on the stone railing encircling the state Capitol, turned in the wheelchair in which he'd completed his journey and faced a couple of dozen supporters.

"Did I get everyone's attention?" he asked at the end of his 100-plus-mile trip, in his chair, from his home in Neenah to Madison.

Schulze, known to many as Quad Carl, has spent his last 18 years using a wheelchair, his spinal cord severed in an accident in 2007. And he's a fierce advocate for the disabled community at large, especially when it comes to Medicare and in-home aides, whose funding faces significant cuts under President Donald Trump's Big Beautiful Bill Act.

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A typical day begins at 6:30 a.m., when Schulze's caregiver helps him into his chair for the day and makes his breakfast. The rest is less structured, he said, no rigorous routine or strict schedule -- in the interest of avoiding complications, which are nonetheless still abundant.

And since 2007, whole chunks of his life have been plagued by inconsistency as the caregivers he relies on find better paying jobs with benefits.

Like many other people living with disabilities, Schulze has experienced weeks when he's without care for multiple days in a row.

To be clear, he doesn't fault the aides: He wants better for them, too.

"People with disabilities on Medicaid, like me, are being left behind because our home health aides, the heartbeat of our care, are underpaid and undervalued. The journey was anything but easy, and every mile I traveled in this chair was a reminder of the strength it takes to live with a disability and, more importantly, the strength of the caregivers who make our lives possible," Schulze said.

"Home health aides are the unsung heroes who help us get out of bed, eat and live with dignity. They're with us in our most vulnerable moments, yet they're paid wages that barely sustain them," he said.

So, to raise awareness, Schulze spent nearly three weeks traversing sidewalks, pathways, city streets and country roads, at times even sleeping in his wheelchair on his journey from Neenah to Madison, which he began July 13. His chair battery allowed him an average of 11-ish miles each travel day, and thankfully, he said, the terrain was relatively agreeable. When he made it to McPike Park on Friday, he was greeted by several champions of the same cause.

"Six people won't change anything, 60 people won't change anything, so I'm building a small army," Schulze said. "Right here is the end of step one."

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Day 3 illustrated the reason behind his journey. Schulze's caretaker couldn't make it, leaving him to sleep in his chair, a phenomenon he's far too accustomed to.

"This is frequent. I mean, this is two or three nights a month," Schulze said.

Quad Carl's journey in disability advocacy started long before he set out from his home in Neenah. Ten years ago, he'd considered a trip across the country, inspired by walking adventurer Carl Bushby. But Bushby's globe-circling ambition didn't exactly seem within reach.

Schulze knew from his first wheelchair voyage, from his first hired aide, that he wanted better for himself and others with disabilities. So he set out to get it. "The dream kept getting chipped down smaller and smaller and smaller until I conceived this idea -- something I could just do on my own with an aide."

Aides get low pay for critical work

The average pay for a hired caregiver is $34,900 per year, or $16.78 per hour, according to the U.S. Bureau of Labor Statistics. Often when paid aides aren't available, the responsibility falls to unpaid loved ones. More than 74,000 disabled and elderly Wisconsinites depend on one of Wisconsin's Medicaid long-term care programs -- Family Care, IRIS, PACE or Partnership).

In a July 2023 survey conducted by Wisconsin's Family Caregiver Support Programs, an organization dedicated to supporting health care aides, nearly 75% of caregiving respondents reported putting of their own health care needs. An additional 72% said they were experiencing frequent exhaustion and burnout, and 90% reported a decline in their own physical or emotional health since taking on caregiving work.

Disability Rights Wisconsin President Nancy Heltemes knows this reality all too well. Her daughter Savanna and son-in-law Henry are both disabled and require care daily, a duty Heltemes shares with Savanna's father and Henry's mother, Gaynelle Peters, who also works as a health care aide outside the home.

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Heltemes recalled one of the family's recent struggles in coordinating care for her daughter and son-in-law. Peters' 36-hour shift with a patient needing around-the-clock care became a 56-hour shift after two people failed to show up for their shifts. This led to a domino effect of drastically altered shifts and thwarted plans.

"When that happens, it's kind of a snowball effect because that means our support has to continue for Savannah and Henry, and we're very fortunate to be able to do that. But then we have to juggle things too," Heltemes said. "Can you say 'caregiver burnout'?"

When options for in-home caregivers run out, many who live with disabilities face the possibility of institutionalization, an option more expensive than raising wages for workers, Schulze said.

Need is growing as funding shrinks

With even higher levels of need forecasted, advocates' cries for greater federal compensation and resources for caregivers and those they serve have grown louder. Home health and personal aide jobs are forecasted to increase 21% between, 2023 and 2033, with about 718,900 openings for home health and personal care aides projected annually within the decade.

While Wisconsin is one of 10 states that has not accepted Medicaid expansion funds, the recently passed state budget raised Wisconsin's health care provider tax, thus locking in higher Medicaid contributions from the federal government.

But the One Big Beautiful Bill Act is expected to slash $1.1 trillion from health care, and those cuts are expected to affect more than 270,000 Wisconsinites.

Assembly Rep. Francesca Hong, D-Madison, joined Schulze on East Washington Avenue, watching him finish that first step in his journey to raise an army of advocates. Microphone in hand, she shared demands for better resources and more funding for caregivers, as well as her admiration for Schulze and others like him who fight to be heard.

"Each one of us is temporarily abled, and caregiving jobs and those who work in care, these are not jobs that can be automated, these are jobs where folks are holding deep burdens, emotional stress and do emotional labor every day," Hong said. "Carl, you're a (expletive) American hero."

"Six people won't change anything, 60 people won't change anything, so I'm building a small army. Right here is the end of step one."

Carl Schulze, who has spent 18 years in a wheelchair after his spinal cord was severed in an accident in 2007

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