News
Self-Determination Network News:
July 2025
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Federal Fallout Update
On July 3rd, the U.S. House approved the Senate’s deeper cuts to Medicaid and SNAP by a vote of 218 to 214, and, on July 4th, President Trump signed the bill into law.
The bill rushed through the U.S. Senate without any public hearings in less than three days with parts being written and rewritten until the final hour before the floor vote. The impact of many added or changed provisions had no formal analysis before the U.S. House passed the bill less than 48 hours after receiving it from the Senate.
According to an initial estimate from the Congressional Budget Office—which does not reflect the final language of the bill—the bill would cut Federal spending on Medicaid, Medicare, and ACA Marketplace by more than $1.1 Trillion. More than $1 Trillion of those cuts come from Medicaid alone. At least 11.8 M people would lose health care. These numbers will increase when more detailed analysis of the final bill is done.
The bill also cuts $ 300 Billion in food assistance, taking away food from an estimated 5 Million people. 45% of Wisconsin SNAP participants are people with disabilities. Two-thirds of the people who use SNAP/Foodshare in Wisconsin are also Medicaid participants.
The bill means states will receive less Federal Medicaid money to help run current Medicaid programs (like Family Care, IRIS, CLTS, ForwardHealth Card, etc.), shifts new costs onto states that they don’t have now, and creates big state budget holes.
We encourage everyone to watch the recording of the latest webinar from the Wisconsin Board for People with Developmental Disabilities and review the slides. You can register for this week's webinar here. Keep contacting your legislators and sharing your stories. We can still make an impact!
InControl Wisconsin Mourns the Passing of John O'Brien
With deep sadness, we mourn the passing of John O'Brien. John was one of the people who brought InControl to Wisconsin. Here is an article from the Inclusion Press about John.
IRIS Waiver Public Comment Period
OR you can mail comments to:
Registration Open!
Registration is now open for the 2025 Self-Determination Conference. This year's conference will be held October 20th-22nd at the Kalahari Resort in Wisconsin Dells. Self-Determination by Design: Your Life, Your Way is the theme this year. Learn more and register today!
Diehard Award Nominations
Die Hard applications are now open through August 14th! Nominees must demonstrate some or all of these characteristics:
- Excellence in advocacy toward Self-Determination and Self-Direction principles, activities, and outcomes.
- Excellence in leadership on systems change in areas of community living, employment, housing, healthcare, education, and technology that enhance the lives of individuals with disabilities and their families throughout Wisconsin.
- Sets a high standard of excellence that promotes values of independence, productivity, inclusion, and self-determination for people with disabilities and their families.
- Commitment to growing Self-Advocacy in Wisconsin.
- Commitment to ensuring people in unserved or underserved communities from diverse cultural and economic backgrounds have a voice
The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.
In July, we're shining the Member Spotlight on Ms. Wheelchair Wisconsin 2025! Karyn was started platform to diminish the negative label on the disability community. If that’s not enough, she’s a Behavioral Health Specialist and is getting ready to pursue her masters degree. She encourages people to set goals and challenge yourself to try new things. Stop by this month's Member Spotlight to get to know Karyn.
Who should we shine the spotlight on next?
"That was a first for me and something that I never thought I’d have to do. But, know what? After doing it, a huge weight was lifted off my shoulders. I definitely learned things from the experience and will apply what I’ve learned in future experiences."
In July, Stacy is back with a journal entry talking about how she did something she never imagined she'd have to do. Have you ever found yourself doing something you never thought you'd have to?
Check out the Latest Videos!
The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the newest videos on the channel:
- "I want doctors to treat me as an adult"
- Choose the Pond
- "Empathy"
- What are your transportation tips and tricks?
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Take five minutes to check out what's happening on the Self-Determination Network:
- Accessible Product Line: A major home furnishings retailer is introducing a new line of products designed to make life easier for people with disabilities Learn which store is doing this and what types of products they will be.
- Many Programs At Risk: As the US Department of Health and Human Services leaders dismantle the small agency that coordinates federal policy on aging and disability, many programs for seniors and people with disabilities are now at risk. Read about what the programs are.
- Fact Sheets: These fact sheets focus on people who are 50 and older in every state. Look at some of the data.
- Kennedy's Comments: Autism advocates are pushing back after US Secretary of Health and Human Services Robert F. Kennedy Jr. Made some degrading comments. Learn about what was said and how people are pushing back.
- Telehealth Survey: A survey is being conducted to find any barriers that people with disabilities disabilities face while using telehealth services.
- Inclusive Coffee Shop: A coffee shop that stands on inclusivity is making a difference in one Wisconsin community. Find out more about this coffee shop and where it is.
- Possible Playbook: As Medicaid cuts and the dismantling of support agencies loom, the co-founder of the Autistic Self-Advocacy Network suggests looking to history for strategies. Learn what strategies he's referring to.
- Effective Strategies: Data for Progress polling reveals effective strategies for advocates opposing Medicaid cuts. Learn what they are.
- Benefits of Hiring People with Disabilities: Studies have shown that people with disabilities often bring unique traits to the workplace. Learn about some of the benefits of having employees with disabilities in the workplace.
- Listen: The Work in Progress podcast did an episode about the critical role paid and unpaid caregivers play in our society and the emotional toll they face. Listen to the episode..
- Caregiving Reform and Analysis: The Wisconsin Department of Health and Human Services is addressing the caregiver crisis to understand what is needed to expand, enhance, and strengthen the direct care workforce. Take a look at some of the surveys and analysis they've done.
- Service Animal Bill: Under a new bill being introduced in the Wisconsin Legislature, people who falsely claim their pet is a service animal in public businesses could face a $200 fine for their first violation. Find out more about this bill.
- The Older Americans Act: The Trump administration is proposing a reorganization and staffing cuts at Department of Health and Human Services that create uncertainty about the potential effects on older adults, who receive services authorized under the Older Americans Act. Read this brief to learn programs and services are provided in this Act.
- Accessibility 100 List: Forbes released its first-ever Accessibility 100 list highlighting innovators and impact-makers in disability accessibility. Learn what's on the list.
- Partners in Policymaking: The Wisconsin Partners in Policymaking program is a six-session advocacy training to prepare future leaders around the state who can work with lawmakers and communities to support the inclusion of people with developmental disabilities in all aspects of life. Applications are now being accepted for the next class. Learn more and apply today!
- Accessible Technology Research Study: The UW–Madison People & Robots Laboratory is looking for adults with Intellectual and Developmental Disabilities to participate in a paid study about how people interact with security and privacy notification. Find out more about this opportunity.
- Disability Pride: To celebrate the 35th anniversary of the Americans with Disabilities Act and Disability Pride month, the city of Madison raised a Disability Pride flag over the city. Read more about Disability Pride month.
- Advocate Slams Medicaid Cuts: The founder of A Day in Our Shoes is denouncing the sweeping cuts in the "One Big Beautiful Bill." Read about a couple of things that will be affected by this bill.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Office Hours on Sidewalk Accessibility; July 15th, 12p.m. to 1p.m., Virtual
- Webinar: Supporting Patients With Chronic Illness Across Care Settings: July 16th, 2p.m. to 3p.m., Virtual
- Community Conversation: July 17th, 6p.m. to 7:30p.m., Virtual
- Disability Pride Fest: July 26th, 12p.m. to 5p.m., Warner Park, Madison WI
- Community Conversation: August 7th, 12p.m. to 1:30p.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.
EIN PRESS WIRE: Disability Advocate Slams Medicaid Cuts in ‘One Big Beautiful Bill’
By SD Network, 2025-07-06
Lisa Lightner, nationally recognized special education advocate and founder of A Day in Our Shoes, is denouncing the sweeping Medicaid cuts signed into law under the “One Big Beautiful Bill,” warning that the legislation will devastate children with disabilities, overburden schools, and bankrupt families.
With deep sadness, we mourn the passing of John O'Brien. John was one of the people who brought InControl to Wisconsin. Below is an article from the Inclusion Press about John.
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To celebrate the 35th anniversary of the Americans with Disabilities Act and Disability Pride month, the city of Madison raised a Disability Pride flag over the city. Disability Pride Month honors the history, challenges, experiences, and achievements of people living with disabilities.
UW-MADISON: Seeking participants for a research study: Accessible Technology Security for Adults with IDD
By SD Network, 2025-07-02
The UW–Madison People & Robots Laboratory is looking for adults with Intellectual and Developmental Disabilities (IDD) to participate in a paid study about how people interact with security and privacy notifications. These notifications include examples like spam email warnings, unsecure website alerts, and cookie prompts on websites. During the study, you will interact with different types of notifications within three tasks, and we will ask you questions about your experience, including what you found helpful or confusing and any suggestions for improving these tools. To be eligible for this study, you must satisfy the following criteria:
- You have IDD.
- You are 18 years old or older.
- You live in the USA.
- You can communicate feedback on your experience verbally or through other means, such as an AAC device.
- You are able to participate in one 1-hour session.
Location: UW-Madison Computer Sciences department; however, we are open to discussing other options.
Expected Duration: 1 hour
Payment: $20/hour
Project PI: Dr. Bilge Mutlu (bmutlu@wisc.edu) and Dr. Rahul Chatterjee (rchatterjee4@wisc.edu)
Optional: Additional support individuals are welcome to join.
If you are interested in participating, please scan the QR code on the flyer I've attached or go to the following link: https://forms.gle/oNaByMP5KgVhKmcZ9
If that does not work for you, please email hljohnson22@wisc.edu to schedule a time to meet or ask any questions you may have.
Our first meeting will be an online video call to ask you questions to ensure you are eligible for the study, complete informed consent, and schedule the in-person session.
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Partners in Policymaking: Applications open for 2025-2026 class
By SD Network, 2025-07-02
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WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Diehard Nominations
By SD Network, 2025-07-02
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Die Hard applications are now open through August 14th! Nominees must demonstrate some or all of these characteristics:
Sponsorship and Exhibitor applications are also open for the 2025 Self-Determination Conference. Please help us continue to move Self-Determination forward in Wisconsin. |
What's your story? Tell us a little bit about yourself.
Ms. Wheelchair Wisconsin 2025, Karyn lives in Waukesha, Wisconsin. The youngest of six siblings, she was born in Nicaragua, but raised in Wisconsin. She shares that she was born with Cerebral Palsy from birth and has been navigating life with a physical and visible disability. She received my bachelor’s degree from the University of Wisconsin-Stout in Human Development and Family Studies, and she works as a Behavioral Health Specialist. Now preparing to begin her master’s in social work at UW-Milwaukee, a long-term goal is to become a certified crisis clinician for a police department.
How are you involved with self-determination? Why did you join the SD Network?
As someone who is strongly self-determined, Karyn tells us that she’s always looking to learn something new educationally and vocationally. Growing up, she has faced many obstacles and society’s opinions on how someone with a physical disability should live their life. “My own self- determination has motivated me to continue breaking negative stigma about disability; to grow my voice to be the healing and guidance of many. No one is bound to their labeled disability and anything and everything is possible if you believe it,” she says.
Joining the SD Network gives Karyn the opportunity to share her platform: Disability Inclusivity and Society as the new title holder, “Ms. Wheelchair Wisconsin 2025.” It also gives her the opportunity to diminish the negative label on the disability community by showcasing that any individual regardless of their type of disability can and will achieve anything and triumph in every battle. “I am here, not so that people believe in me, but that they can believe in themselves as ambassadors to empower change in the good of all,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
The most exciting thing that is currently happening for Karyn is exploring the journey of a lifetime as the new titleholder Ms. Wheelchair Wisconsin 2025.
There is a need of a voice. A voice that speaks for the many. A voice that stands for the power within the disabled community. There is great light. There is great strength, I see it long and far. The many with the label disability will know. Know that they can stand up. They can fight for equality. They will fight for the end of stigma. There shall be no more marginalization. I stand to defend the many hearts out there with a greater fight than I. To be, to help, to deliver, to heal and to create awareness. I will not stop fighting until every voice out there is heard. -Karyn
What tip or resource would you like to share with people who want to be more self-determined?
Karyn has a couple of tips for people who want to become more self-determined. They include: setting goals for yourself, challenging yourself to try new things that may be outside of your comfort zone, and build a positive and valuable support network with those that will help with seeing your potential as well as push you to grow.
What are some of your hobbies?
In her spare time, Karyn enjoys listening to music, hanging out with friends, going on sporadic adventures, trying new foods, and nature walks in the summertime.
***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.