News

Self-Determination Network News:

May 2026

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

• Watch: The National Council on Independent Living has launched a video oral history series preserving firsthand accounts from leaders of the Independent Living movement. Watch this awesome series.
• Medicaid Coverage: A new report from the Urban Institute warns that between 4.9 and 10.1 million Americans could lose Medicaid coverage by 2028 due to the One Big Beautiful Bill Act, a budget law signed by President Trump in July 2025. Learn how many people in Wisconsin are at risk of losing benefits.
• Proposed Requirement to Report Wages: In its March 2026 annual report to Congress, the Medicaid and CHIP Payment and Access Commission recommended that the Centers for Medicare & Medicaid Services require states to report hourly wages for home- and community-based services workers. Find out why this requirement would be helpful.
• Others Must Step Up: Some people are saying that a coalition of private-sector organizations, states, and clinical societies needs to be formed to step into the leadership void that is the result of the dismantling essential essential infrastructure and funding for Americans with disabilities. Read about this non-federal response should focus on.
• Care as a Public Good: A brief argues that the United States must shift from viewing care as a private, individual burden to a shared public infrastructure to foster a more equitable economy. Read to find out more about why the shift is necessary.
• Outcomes of Family Caregivers: A new study  found that people whose primary caregiver is a paid family member or friend report significantly better outcomes than those supported by agency-employed staff. Find out why.
• Rule Delayed: The U.S. Department of Justice has issued an interim final rule delaying the implementation of new ADA Title II web accessibility standards by at least one year. Learn why disability advocates are concerned.
• Take Survey: How do people with and without a disability think about the experience of a disability? A team of researchers and disability advocates would appreciate your input. Learn more about this.
• New Podcast about Self-Direction: Get Fired Up is a new podcast hosted by Cindy and Jamie from Community Horizons, a support broker agency in Wisconsin that helps people with disabilities hire and manage their own caregivers.  Check it out.
• Backlash over Comments: Health and Human Services Secretary, Robert F. Kennedy Jr., is facing backlash from disability advocates after comments he made about Medicaid home care programs that pay people to take care of relatives. Find out why.
• Kids Forced to Become Caregivers: This article argues that due to federal cuts more children are being forced into caregiving roles. Read about how cuts will further worsen the caregiving crisis forcing children to be caregivers for family members.
• Five Accessible Cities: For travelers with mobility challenges, things such as robust public transportation options and walkable city centers are often key. Learn about five top-notch cities in the US that are accessible.
• Fears of Cuts to Social Security: A recent ProPublica investigation reveals that the Trump administration is pushing a rule change to the Supplemental Security Income (SSI) program that could reduce or eliminate benefits for approximately 400,000 people with disabilities. Read about what the change could mean.
• Home and Community-Based Services Improve Outcomes: This research brief from the Community Living Policy Center highlights that Medicaid Home and Community-Based Services (HCBS) significantly improve quality of life while proving more cost-effective than institutional care. Learn about some of the stats on the benefits of HCBS.
• Disability Advocate Speaks Out: A Wisconsin self-advocate is speaking out regarding the significant Medicaid cuts mandated by the One Big Beautiful Bill Act signed in 2025. Read about what the feared impacts.
• Disability Employment Ranking: According to recent data, Wisconsin ranks in the top 20 for disability-inclusive employment. Find out where we rank and what's it based on.

Upcoming Events 

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

• Webinar: Walk Sign Is On to Cross: Requirements for Accessible Pedestrian Signals in PROWAG: May 14th, 1:30p.m. to 3p.m., Virtual 
• Webinar: Addressing Cognitive Impairment and Dementia Among Older Adults Experiencing Housing Insecurity and Homelessness: May 14th, 2p.m. to 3p.m., Virtual 
• Webinar: A Systematic Approach to PDF Accessibility: May 19th, 12p.m. to 1:30p.m., Virtual 
• Webinar: Planning and Zoning for Inclusive Design: May 19th, 1p.m. to 2:30p.m., Virtual
• WisTech 2026 Training #1 Getting from Point A to B: Accessible Transportation: May 20th, 10a.m. to 11:30a.m., Virtual  
• National Self-Direction Conference: May 27th-29th, Minneapolis, MN
• Employment First Conference: June 1st-2nd, Kalahari Resort, Wisconsin Dells, WI
• WisTech 2026 Training #2 Self-Advocacy in the Digital Age: June 9th, 10a.m to 11:30a.m., Virtual 
• WisTech 2026 Training #3 Rising Need, Rapid Innovation: The State of Access Technology for Individuals who are Blind or Low Vision: June 30th, 10a.m to 11:30a.m., Virtual 
• WisTech 2026 Training #4 Adaptive Cooking: Accessing Meal Preparation through Assistive Technology: August 4th, 10a.m. to 11:30a.m., Virtual 

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.

Meet Brett. This history buff has aspirations of running for office one day. As a recent Partners in Policymaking grad, he is looking forward to getting more involved with community engagement. He recently graduated with a degree in Health and Wellness and is looking forward to continuing his education. He encourages people not to segregate themselves and to be stubborn but accepting. We’re so fortunate to have him as a member on the Network!

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

Brett shares that he was born with two speech disabilities, Apraxia of Speech and Dysarthria. The earliest his speech affected him was when he was a few years old at Disneyland, where an elderly couple complained about him “screeching like a monkey”. Throughout his childhood, he was in speech therapy in school, summer school, and Children’s hospital. He explains that it was very hard to see the other kids “graduate” from his speech therapy groups, and he always wondered when it’d be his turn. Still to this day, his speech disabilities are apparent, but he has finally accepted that this is something about him that will never change. “I had big dreams about where I wanted to go to college, what career I wanted to be, and the life I wanted to live. I had hoped I would “grow out” of my speech disabilities by age 18,” he says.

Pulled out of in-person school freshman year by his mother, Brett started attending an online school before COVID. Socially, he was isolated, and he felt segregated due to his disability. He explains that he always wanted to go to private school as a young kid as he felt it must be better quality education; however, his mother would tell him that they would never accept him due to his disability. Systematically, he feels that the school system failed him as the bias of teachers had a major effect on him. “When I was 18, I was thrown into the world without any path of transition between school to workforce,” he tells us.

Brett never felt like he could go to school or apply for most jobs because he felt like his speech disability prevented him. He interviewed about 100 times before someone finally hired him for his first job. “I remember every interview where I was discriminated against without any way to prove the ADA violation. I felt like I was forced to look for only cleaning and dishwashing jobs as those didn’t involve speech for my whole life. Furthermore, it was very hard making social connections, as I would not speak to anybody,” he explains.

Over the years, as Brett got older, he felt like he failed, failed again, and kept on failing; however, he kept on learning and gaining new experiences. He says that these failures helped him develop faster due to his own stubbornness that I wanted to at least find a place in society for myself. Eventfully, he was acknowledged as a hard worker, and he gained the confidence to seek promotions. Still, he was denied due to his disabilities sometimes.

Finally, Brett found himself promoted after arriving to a new employer under a European version of his name “Bretislav”. He explains that people always come up to him and ask him where he’s from and try to guess the country. It happens every month, and many will refuse to believe him when he says, “I’m from the southside of Milwaukee” and keep on imploring. Through adversity, he learned to love business management and leadership, where he found high sales, metrics, and employee retention. Teaching and training, servant leadership, having a mentor mindset has all led to him loving being a manager. However, he got burnt out and saw a new opportunity. He attended Moraine Park Tech College for their Health and Wellness Program to learn how to be healthy. He succeeded and became an all-A student for the first time in his life at age 29. When he made this decision, he stepped down to become a van delivery driver through his company where he makes grocery deliveries into people’s homes and fridges. Many of his customers are people with disabilities who are unable to shop in store.

How are you involved with self-determination? What advocacy things are you involved in?

People have always called Brett stubborn, but now he sees that it’s his self-determination. He has just graduated from Wisconsin’s Board for People with Developmental Disabilities’ Partners in Policymaking class of 2026 where he made many bonds with advocates all over Wisconsin who he’ll be working with long term towards achieving their goals. He has also been active with political parties and grassroots organizations. He had recently run for Treasurer of his local pollical party, where he received the first election ended in a tie in the party’s history. Unfortunately, he did not win the tie breaker, but it really showed his community acknowledging him.

Brett is starting to use social media as a way to project his voice and influence. “Public speaking will be my next goal, which is crazy to think of when you have a speech disability,” he says. He’s looking to expand into community education and engagement. He shares that his big goal is once he’s out of university, he’s planning to run for offices in his community and State--such as Assembly or Senate. He excitedly exclaims, “these elections I will win, as it’ll be through the community’s acknowledgement of my worth of a person!”

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

 Brett is looking forward to graduating with a Health and Wellness degree from MPTC with high honors, and he received the “Campus Impact” student award through his leadership as President of the Health and Wellness Club. He has recently accepted a full scholarship for a bachelor’s degree in Business Management and Leadership at Bellevue University. As mentioned above, he was in the 2026 class of Partner’s in Policymaking where he will forever be grateful to his fellow partners. He’s also looking forward to applying for a new leadership job position now that schedule accommodates it with school. “Most importantly, I am looking forward to my wedding with my wonderful fiancée who has supported me the most,” he says.

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

Brett encourages people to be stubborn but be accepting, be prideful but be humble, and be curious and be patient. Every day, he wakes up and says, “This is my life. This is my life. Nobody can decide what happens to me. I choose to be myself. I look forward, I look towards everything in my future, I reflect on all the good that I have done, I embrace those positives around me in the present.” He says do not segregate yourself. He shares it has been his greatest struggle. Brett’s boss once told him while he was trying to earn his first promotion, “I want to see how you handle adversity.” Brett didn’t know what he meant, so he asked what kind. His boss said, “any kind.” Upon reflection, Brett noticed that, all his life, he has been handling adversity, and that’s when his leadership grew.

 What are some of your hobbies?

Brett’s biggest passion is history. “I studied far and wide, and in a world without needing money, I would have a PHD in history,” he says. Local adventures keep his mind fresh; however, he hopes to have adventures farer one day. He likes to stay engaged in his community and is looking to start a YouTube channel based on community education and engagement. He loves meeting and talking to new people. Late at night, he likes to end the last hour of his day relaxing and accidently falling asleep on the couch as he and his fiancée watch tv, movies, or play video games.

***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.

Going on an exotic vacation. Seeing friends and family. Helping an elderly neighbor. Finishing a marathon. What do these things have in common? They are all things that fill people’s bucket. The term “bucket” is a figurative one in this context. The phrase ”filling my bucket” often refers making a person feel fulfilled or good about themselves. There are many different ways and things that fill our buckets, and nobody’s bucket is exactly the same. Everyone has different things that make them happy. Some things that fill our buckets can be part of our everyday routine; while others are once-in-a-lifetime type of things. Regardless of what type of thing or action it is, when it happens, it fills your heart with joy and boosts your esteem.

“Thanks so much for letting me come in today. It really filled my bucket,” I texted one of my best friends recently after visiting and speaking to the kindergarten class she teaches. It was really neat because she and I have been friends since elementary school, and, now, here I was talking to her kindergarten class. As I explained in a previous entry, if my circumstances had been just a little different, I would have been a teacher. I absolutely love kids and I love seeing them blossom and learn. It fills my heart with so much joy—it’s truly unexplainable. I’ve done presentations for kids of all ages over the years. Depending on the age, I talk about my life living life with a physical disability. For kindergarten, it’s basic disability awareness and exposure talking about everyone is different, explaining what cerebral palsy is, and answering questions. Admittedly, kindergarten is the funniest age to do because they have no filter and the questions that they ask are often hilarious. My favorite one is who’s my favorite Disney princess? On the other hand, my favorite age group to talk to is high school kids. I talk about what kinds of services you can get through IEPs and how to advocate for the accommodations you may need to succeed. I can share my story, but, more importantly, I encourage them not to give up. By sharing some of the struggles and barriers I’ve overcome, I try to motivate them not to give up when life gets hard. Regardless of the age, being able to go to classrooms and educate kids really fills my bucket.

As I wrote about in an entry a few years ago, another thing that fills my bucket is spending time with my little nephews. While I still have that yearning to be a mother and more than likely always will, I’m absolutely loving being Aunt Stacy. My nephews are three and almost six now and they’re so fun. They both can take rides on the back of my chair and they just think that’s so cool. Of course, they want it on the fastest speed which makes Auntie nervous, but it makes my heart melt every time they ask for a ride. Is it something that aunts normally do? Of course not, but it’s something special that I can do with them. They’re learning how to communicate with me and it’s really cool seeing how their minds are working. It fills my bucket knowing I’ll be a part of their lives as they grow up.

Like everyone else, hanging out with friends also fills my bucket. Due to life’s circumstances, I don’t have the opportunity to get together with friends very often. Most of my friends live in a different city, state, or even country than I do, so getting together doesn’t happen very often. Also, most of my closest friends have families and kids of their own, so, obviously and rightfully so, they’re busy with them. Knowing that, it fills my bucket even more when we do get together because it means so much to me that they want to take the time to spend time with me. Furthermore, I’m not oblivious to the fact that it takes some extra effort to have a friendship with me, and it really means a lot to me that so many people are willing to do that.

Call it aging, call it self-care, attribute it to the looming Medicaid cuts, call it whatever you want, but over the last year, I’ve been really trying to do simple things that fill my bucket. Things like taking a walk to the store and McDonald’s on a Thursday morning when it’s nice out or watching almost all of the basketball games during the March Madness tournament fill my bucket as well. These are just simple things can do to give myself a boost of joy.

Over the last few years, I’ve been a lot more intentional about the things that I get involved in. Part of it because my body can’t handle too much stress, but part of it is also because I know that my time of being able to do the things that really fill my bucket is limited. This may sound self-centered, but I want to have time to do things that fill my bucket while I can.

Of course, we all have obligations such as work, family things, and other things that we have to do, but everyone should take time to do things that fill their own buckets sometimes. In this day in age where everything often seems so hustled and bustled, we need to take the time to do whatever fills our own buckets. I want to challenge you to take some time out of every day to do something that fills your bucket. Remember, we only get one life to live—we have to take time to enjoy it!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors