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Bipartisan legislation by Reps. Salud Carbajal and Don Bacon would repeal Medicaid's Institutions for Mental Diseases exclusion, allowing federal funds for mental health facilities with more than 16 beds. The Consortium for Constituents with Disabilities and 60+ disability groups oppose the bill, arguing it could direct tens of billions toward institutionalization while community-based services face cuts from the One Big Beautiful Bill Act. CBO estimates eliminating the IMD exclusion would cost $7.7-38.4 billion.

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Meet Steven. This author has written and published several books. He dreams of being a New York author. He has worked hard to create a life for himself and he is worried about how the effects of the cuts to Medicaid will affect him. He encourages people not to give up and to keep working towards what they want. We are so fortunate to have Steven as a member of the Network.

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

Steven is an author with cerebral palsy who has seven published books (It’s New Life! My Mom Is Gone, I Found Love, and Why Did It Happen are available on Amazon). He explains that Morse code is how he writes using his head since he’s unable to use his hands. Currently, he’s working on his fourteenth manuscript. He has a literary agent and a publisher. He lives independently in Madison, Wisconsin, and he has a bachelor of science with a writing minor from the University of Wisconsin-Stevens Point and a Liberal Arts degree from Madison College. He shares that the Department of Vocational Rehabilitation (DVR) labelled him as unemployable at the age of eighteen. “I was shown the door. I needed a way to access a computer,” he explains. In high school, he dictated to an aide and his mother to do his homework assignments and tests. He graduated from high school with honors. He explains that after high school, he sat at home for two years feeling sorry for himself and watching TV. I was angry at the world. He tells us that his mother made him read during the day.  He read Sports Illustrated, sports autobiographies, and books. “One day mom pulled out My Left Foot by Christy Brown. Christy had cerebral palsy. He painted and wrote with his left foot. Christy didn't go to school, wanted friends, and questioned whether to live or not. I laughed and cried while I read the book. It made up my mind about becoming a writer and publishing my own book,” he says. He wanted to become Christy Brown. 

“Going to college was my dream. I would cry about going to college,” he tells us. His mother would pay for his education and devoted her life to him. He explains that she bought houses, moved, purchased computers, shoveled snow, turned countless pages, and took care of him without any help or a vacation for thirty years. She never complained. 

In college, Steven was a part-time student taking six or nine credits a semester and earned A's and B's in his classes determined to prove DVR wrong. He shares that some of the instructors didn't want him in their class or didn't believe he could do the work. Luckily, he found some instructors willing to teach him. “I had to prove to myself, classmates, and instructors that I did belong,” he says. 

Steven’s uncle found a disabled woman who ran a nonprofit computer clinic in Chicago. He explains that she invited him to try out computers over the summer. He and his mom would travel to Chicago to try out computers. He tried out a voice recognition computer. The first sentence he ever wrote was, "I am a writer." His mother brought him the ten thousand dollar computer. It was slow since he spelled each letter of each word and he had to pronounce every command exactly the same way or the computer wouldn't work. His instructors allowed him to write his exams at home giving him extra time to write, but his didn't ask for an extension to write his papers. “I always worked ahead. I never wanted any special treatment,” he tells us. 

After earning his associate degree from Madison College, he transferred to the University of Wisconsin-Stevens Point. “I needed to learn how to write. Point has a writing emphasis program meaning I had to write in every class. Then the acclaimed novelist Larry Watson taught me how to write,” he explains. He  met four life-long friends while attending Stevens Point who are his inspiration. “They believed in the impossible dream. Without them, I'm nothing. They made me grow up after my mother died and I became independent,” he shares. He graduated from Stevens Point with honors. It was bittersweet. He did it, but college was over. It was time to write. He explains that he needed to adjust from being a student to a writer. In college, he saw people every day, but now he was homebound. He wrote his first manuscript and became a hermit. For eighteen years, he critiqued papers for some instructors at Madison College. They paid him out of their pockets since he would have needed an education degree to be hired by the college. He shares that speech had deteriorated even though he wanted to be a tutor working with the students. He was an author and going back to school wasn't an option. He was a writer writing and working. “When I wasn't critiquing, I was writing. My classmates always reminded me I was an author even though Special Needs college advisors told me to go back to school,” he says. 

He kept writing and publishing, but he needed a literary agent to get my books in bookstores and be on TV. He shares that for years, he queried agents only to be rejected. Then, he attended a writing conference hosted by the UW. Every April, he went to the conference learning his craft, pitching manuscripts to agents, and meeting people from all over the country. “It was the highlight of my year. I worked the entire year for three days in April,” he tells us. His eighth year attending the conference, an agent offered to "coach" him. For two months, he rewrote and edited a few children's manuscripts, but the agent kept making changes. He wanted to quit, but his classmates reminded him that he wanted this. Then, he received a contract from the agent one night when he was critiquing papers. He said, "Yes." He emailed family and friends telling them he had an agent. He recalls his mother woke up to help him to bed and he said, "I have an agent!"

At the same time, voice recognition software wasn't made anymore. He explains that an occupational therapist at the Wiasman Center introduced him to Morse code as an input device. It was cheap. In two weeks, he learned Morse code. A month later, he was writing using Morse code. It allowed him to edit, email, surf the Internet, and write without any help. He tells us that he was able to write more with accuracy and write at night. It is hard for him to talk after dinner, but Morse code enabled him to write at night. 

Steven’s agent asked him to write a middle grade manuscript. He wrote the first draft of the manuscript in four months. His agent tore it all apart. He started to rewrite it when his mother died after a brief illness. 

After his mother’s death, he says he turned into an adult making all of his decisions. Within a month, he hired a care agency, adjusted to having caregivers, chose a home, moved, started living with roommates, and buried his mother. Then, he started to write again. In eight months, he wrote two manuscripts and publish them. He shares that he wrote at night when the group home was quiet. 

On the anniversary of his mother's death, Steven started going to places like the Memorial Union and bars. He was exhausted from writing and needed people in his life. He tells us that a bar "adopted" him, giving him free drinks and serving him when they weren't busy. He met some guys and they watched the Packers games together. Then, he started going to the farmers' market buying vegetables every Saturday morning and the Bartell Theater became a favorite place of his. A play writing group invited him to join the group. “In a year, I had created a new life with people who love me. I was never home,” he says. 

Steven admits that living in a group home was hard at times even though he had two rooms which is unheard of, but his care agency saw how passionate he was about his writing career. He had an office and a bedroom. He tells us that the office was a man cave with a big screen TV. I wrote and watched sports. It was nice, but he lived with two less than ideal roommates who couldn't be outside alone and had no responsibilities. “I'm my own guardian. I can do what I want and when I want, but I have to handle everything from reviews and the endless stream of paperwork. If there is an issue with the electric wheelchair, care, or SSI, it is my job to take care of things. Everything is on me. Plus, I have to write,” he explains. 

Steven shares that caregivers come and go like the wind. “I have been called a "racist" and "I'm selfish, awful, and no one loves me," by some attendants,” he says. 

He felt like he lived in two different worlds. When his care agency changed its policy of having women visit in the home, he felt trapped. He explains that the agency didn't tell him this until after he had a visitor and his caregivers threw her out. “I was informed by the agency that if I wanted to be with a woman I had to go to a hotel without the help of the staff. That made it impossible. Then I couldn't have a woman over to socialize. It was the last straw,” he tells us. 

He found a new apartment building going up and applied to Movin' Out and hired a new care agency. 

For two years, Steven has lived independently. “I love it,” he says. He has revised four manuscripts and a play.  He shares with us that a manuscript is being read by publishers and a play might be staged in February at the Bartell Theater. “I'm writing another manuscript. I'm still looking for my friend. We'll see,” he tells us. 

In a year, Steven thinks he’ll probably have to return to a group home due to the cuts to Medicaid. “It makes me question whether to live or not. I can't make up my mind. I have seven more months to live. Then I might end my life even though I don't want to,” he sadly says.

How did you become involved in self-determination? What made you join the SD Network? 

Steven joined the Network in hopes of meeting new people. He feels you have to advocate for yourself when you're disabled. He explains that some people are mean to people with disabilities, but the vast majority of people do care about them. “My job is to speak for those who don't have a voice. Our representatives know who I am, including the president. I write about the disabled to show others that we have the same dreams, needs and desires like everyone else. Sadly, most of us will be dead in a year. The elimination of Medicaid will change the world of their lives. I hope my words will be heard someday. We do matter, and deserve good care in order to live. I will always live. I'll have to pay for them to give a tax break for the upper class. It is unfair,” he tells us.  

What is the most exciting thing in your life involving self-determination? 

For Steven, the most exciting thing is receiving nice rejections from New York publishers wishing him the best and promising he will find the right publisher. “I don't have much time left but at least I have hope of being a New York author. That's the dream. It would be the biggest challenge. I want it, but time is uncertain now. Steven Salmon, the New York author has a great ring to it,” he tells us. According to him, he loves sitting at a bar telling a person what he does. He explains that they Googled his name on their phone and their eyes lit up.

What is a tip or a resource you would tell someone who wants to be self-determined? 

Steven says to never give up. He encourages people to keep working towards what they want.

What are some of your hobbies? 

Steven loves watching football and basketball. He also enjoys being outside, going to movies, listening to music, dancing, reading, and being with friends. “I also love women,” he adds with a smirk!

***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.

New data released by the personal finance company WalletHub has revealed the best, and worst, U.S. cities for people with disabilities. There were 33 metrics in total, including housing affordability, cost of living, special-education teachers per 1,000 school-aged people with disabilities, walkability, cost of a doctor visit, and many others.

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Wisconsin disability advocates are pushing back after President Trump publicly claimed that Tylenol during pregnancy could be the cause of autism. According to science, this is absolutely incorrect. Many disability groups and organizations, including the Wisconsin Board for People with Developmental Disabilities, are pushing back.

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The Trump administration's changes at the Social Security Administration have hurt many disabled and poor Americans, says a report coming out next month. Why it matters: The findings, based on interviews with 14 benefits specialists, attorneys and others who help multiple people apply for benefits, show how the process is pushing many of the poorest Americans closer to the financial edges: potential homelessness, food insecurity and suicidal ideation. 

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Former Assistant Secretary of Labor Neil Romano and disability policy expert Sara Weir Rogers argue the U.S. disability system traps people in poverty through contradictory programs and benefit cliffs that punish work. They note 93% of people with disabilities want to work but face losing benefits for earning "too much," leaving $25 billion in economic activity untapped. The authors call for bold reorganization to empower rather than penalize disabled Americans, citing decades of GAO warnings about uncoordinated, ineffective federal programs.

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Self-Determination Network News:

September 2025

Connect | Share |Learn | http://sdnetworkwi.org

Take five minutes to check out what's happening on the Self-Determination Network:

• New Cafe: A new cafe in one Wisconsin city is not only serving up delicious coffee and treats, it's also providing jobs for people with all abilities. Learn where this new cafe is.
• Compounded Impact: President Trump signed an executive order that would make it easier for states to remove unhoused people from streets.  Find out why advocates are concerned about the compounded impacts of all these changes for people with disabilities.
• Institutionalization Fears: Advocates are concerned after a White House order calls for greater reliance on institutionalization threatens decades of precedent on disability rights.  Read about why advocates are concerned.
• Conditions Added: The Social Security Administration has recently added 13 new conditions to its Compassionate Allowances list, which will enable more people to access disability benefits more quickly.  Learn what conditions were added.
• Hidden Costs: With the passage of the big Republican tax and spending bill, the federal government is poised to reduce support for Medicaid and the insurance marketplaces established by the Affordable Care Act.  Read about the hidden cuts that are in this bill.
• New Caregiving Report: A new report reveals that 63 million people in this country now provides unpaid caregiving, with many facing financial and health challenges. Find out what else the report said.
• Medicaid Policy Timeline: The National Association of Medicaid Directors released a timeline outlining key Medicaid policy changes in the One Big Beautiful Bill Act that require immediate state planning. Take a look.
• Listen: This summer marked the 60th anniversary of Medicare and Medicaid, the twin government programs that have shaped the health care system into what it is today. Listen to this podcast to learn about the history, significance, and future of these programs.
• Two California Sisters Rely on Medicaid: Two sisters in California rely on  In-Home Supportive Services- a self-direction program that allows them to hire and manage their own caregivers. Learn about why these sisters now fear for their independence.
• Possible End to Mail-in Voting: President Trump announced plans for an executive order to eliminate mail-in voting. Find out why people with disabilities are worried.
• New Program: Medicare's new GUIDE program pays up to $2,500 annually for respite care for dementia patients, marking the first time Medicare has supported unpaid family caregivers. Read more about this program.
• Caregiver Respite Resources: The National Respite Network has released new caregiver respite resources. Check it out.
• Public Health Webpages Restored: After many went dark to comply with an executive order on DEI, many public health webpages have been restored. Learn about why this happened.
• Disability Benefits Cut: Hundreds of thousands of poor Americans are poised to get their disability benefits cut, as the Trump administration moves to reverse a Biden-era change. Find out what benefits are in jeopardy. 

Upcoming Events 

Here's a sample of upcoming events listed on the Self-Determination Network:

• A Journey Through Global Accessibility Laws: September 16th, 12p.m. to 1:30p.m., Virtual
• Webinar: Smart Home Technology Solutions for Individuals With Accessibility Needs: September 16th, 12:30p.m. to 1:30p.m., Virtual 
• Webinar: ADA Audio: Sexual Education, Disability, and the Law: Understanding the ADA’s Role: September 23rd, 1:30p.m. to 3p.m., Virtual 
• Webinar: Don’t Panic! How to Navigate the 2010 ADA Standards and HUD’s Deeming Notice Part 1 of 2: October 2nd, 1:30p.m. to 3p.m., Virtual 
• Self Determination Conference 2025: October 20th-22nd, Kalahari Resort, Wisconsin Dells WI

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.'

Hundreds of thousands of poor Americans are poised to get their disability benefits cut, as the Trump administration moves to reverse a Biden-era change. It would hurt low-income and disabled Americans at a time when inflation is driving up the cost of food and shelter; and further cuts to Medicaid and food benefits are on tap. 

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