Meet Carl. This determined advocate has recently found the power of his voice. After trekking to the state Capitol to raise awareness about low pay rates for home caregivers, he has eyes set on going cross country to do the same thing. He’s taking Partners in Policymaking now and is thinking about running for county board supervisor in Spring. He encourages people to try to narrow your cause to a single issue when advocating. We’re so fortunate to have Carl as a member of the Network!

What's your story?  Tell us a little bit about yourself.

Carl is a 45-year-old C5 quadriplegic. He shares that he became disabled 18 years ago after drinking too much at Oktoberfest and falling off of his friend’s back porch. At the time, he was foreman of a concrete company and played guitar in three different groups. Since then, he’s been enjoying life and raising his three kids. “I’m very lucky I don’t have a breathing tube and that I can use my arms quite well,” he tells us.

For over ten years, Carl has been dreaming of crossing the country in my wheelchair. He explains that it started as a selfish desire to pack all of the adventures he has missed out on in life into one big trip. After speaking on the phone with three different people who have already crossed the country in their wheelchairs, it turned into an activist campaign. He spent about three years trying to build a team without any success before having the epiphany that he should do a proof of concept and drive from his apartment to the state capital Madison. His goal was to raise awareness of the lack of home healthcare access for people like himself who are on Medicaid and the underlying problem which is low pay for home health workers. Last summer, he left his apartment located in the Fox Valley and drove for two hours until the batteries died. He made it 10 miles. He then got in his van and went home to charge his batteries. The next day, he picked up where he left off. After a total of 13 days on the road, he made it to the Capitol. Along the way, he had some great awesome press coverage to raise awareness.

How are you involved with self-determination? Why did you join the SD Network?

Carl recently learned about the Self-Determination Network. He shares that he’s guilty of not being involved in the disability community up until now. “My life has been comfortable and I didn’t feel that I was missing anything until recently when three of my longtime aides moved on” he explains.  Last summer, he learned that he seems to have a knack at communication, and he wants to use that skill to highlight issues in the disability community and get them fixed.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Carl is currently taking the Partners in Policymaking course and he’s considering a run for Winnebago County board supervisor this spring. He’s also thinking about next year‘s ride to Madison. “If I’m able to cross the country, I should be back by the middle of August which will leave me plenty of time to also go from my apartment to the capital again. I want to make this a yearly event,” he says.

What tip or resource would you like to share with people who want to be more self-determined?

Carl says if people are interested in becoming more self-determined, they’ve already achieved the first step. There are tons of ways to get involved. He encourages people try to narrow your cause down to a single issue if possible because that would be easier to focus on and hopefully create change.

What are some of your hobbies?

Right now, Carl’s favorite hobby is trying to break his all-time record of likes for a tweet on Twitter. His record is 256k.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

Do you need help completing a Wisconsin Medicaid provider enrollment application on the ForwardHealth Portal? Join Department of Health Services for in-person support

If you are an adult long-term care (LTC) waiver services provider, the deadline to submit your Wisconsin Medicaid application through the ForwardHealth Portal (the Portal) is coming soon! It is important to enroll with Wisconsin Medicaid as soon as possible to make sure you continue to be paid by managed care organizations (MCOs) or IRIS (Include, Respect, I Self-Direct) fiscal employer agents (FEAs).

If you are looking for someone to help you enroll, the Wisconsin Department of Health Services (DHS) is hosting six in-person support sessions throughout the State of Wisconsin.
 

Find an in-person support session near you

Check out the table below to find the dates and locations for each support session. Sessions are from 8 a.m.–5:30 p.m. and each session is one hour. Sign up for an in-person support session to reserve your time slot.

Sign up for an in-person support session

Alice Wong, a disability rights activist and author whose independence and writing inspired others, has passed away. She was a national  advocate for people with disabilities and was known for her work in disability justice.

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This article from The Wisconsin Independent highlights the concerns of Megan Lowe, a Wisconsin mother of a daughter with Rett syndrome, regarding the impact of significant Medicaid cuts introduced by the One Big Beautiful Bill Act, signed into law by President Donald Trump in July 2025. The legislation reduces federal Medicaid spending by $1 trillion over the next decade, potentially affecting healthcare coverage for 80 million Americans, including children and individuals with disabilities. Lowe shares her fears about losing Medicaid support, which currently covers essential medical supplies, therapies, and respite care for her daughter, Norah. She also expresses concerns about the accessibility of contraception for women with disabilities and the potential closure of nearby rural hospitals due to funding cuts. The article further discusses the broader implications of Medicaid cuts, including rising health insurance premiums and the expiration of tax credits for Affordable Care Act policies, which could lead to financial strain for millions of Americans.

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Two Wisconsin artists have created a disability justice zine titled Crip Wisdoms: A Feminist Disability Studies Coloring Book. The zine combines quotes, poems, reflections, and interactive activities to explore disability justice concepts like spoon theory, care, masking, and pleasure activism. It is available in print, braille, and digital formats, with a large-print edition forthcoming. The creators partnered with Clovernook Press to produce a tactile braille version for blind readers, incorporating raised textures and detailed image descriptions. All profits from the zine are being donated to the Disability Visibility Project.

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