Self-Determination Network News:

July 2025

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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.

Upcoming Events 

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.

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.

Read more

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.

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.

Read more 

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.

Have you ever been thrown into something that you never imagined yourself doing? Whether it’s learning a new skill set to keep your job, traveling around the world to support your significant other, protesting about something at the Capitol, assisting a loved one with intimate cares, or another thing where you were forced to learn how to do something so you or someone you care about could pursue an essential step to move forward in life, almost everyone has experienced some sort of thing where they had to do something that they never imagined themselves doing. Usually, in these situations, although it may be uncomfortable and stressful, people are more than willing to do whatever it is to make life better for themselves or someone they care about.

Thanks to Facebook memories, I was recently reminded that we have been hiring, scheduling, and managing caregivers for over nine years. I say “we” because it’s really a team effort. Nine years ago, I had made the decision to leave the agency I was with for only eight months due to major safety concerns. We had reached other options, and, as is still true today, we learned that doing it ourselves was the only option if I wanted to continue to live in my apartment. I fully admit, I had no idea what I was getting into. I had talked with a couple of friends who had been doing it for awhile and they gave me some tips. I have no HR or management degrees, but, oh, did I learn quickly.

Everything from creating an ad, to finding free websites to advertise on, to doing background checks on CCAP, to interviewing hundreds of people, to completing thousands of pages of paperwork, to waiting weeks on end for someone to be approved only to have the person not responding when you try to setup a time for training, to having people not show for training and shifts, to creating schedules with several people, to having people quit or call in with little to no notice… The list of things that is truly endless. To say I’ve learned a lot in nine years is a huge understatement.

One of the most important things I’ve learned is how to do what’s best for me. That sounds really selfish, but, when you’re reliant on caregivers to literally help you live your life, you have to be very specific about how you want to live. Of course, it’s a very fine line because you can’t be too picky or nobody is going to want to work with you. On the other hand, though, it is YOUR life. For both the client and the caregiver, sometimes it’s hard to remember that.

With all the Medicaid stuff going on, there’s a meme going around on social media saying, “I do not live in your workplace. You work in my home.”  This quote couldn’t be more accurate. My workers are in my home to help me live MY life. The timing of this meme was pretty ironic for me personally. 

I like to think of myself as a pretty patient and understanding person. Even when caregivers have no similar interests and have very different personalities than I do, I can usually find common ground somewhere—at least enough to have a cordial working relationship with the person. As I’ve discussed in past entries, I’m not going to be best friends with every caregiver and that’s perfectly fine. Having said that, when a caregiver has completely different interests and doesn’t respect your requests after being asked repeatedly, you are bound to run into some problems. This is what happened recently. The particular worker was with me for just under six months, and I really tried to make it work. She was punctual and able to physically do the work; however, not only did she have nothing in common with me, she said some very inappropriate and bizarre things. In addition, there were other concerns with things like privacy, respecting boundaries, and not following directions. It was really affecting my mental health. Each counseling session, we’d spend at least half the hour talking about how to deal with her.  It came to a point where I knew I had to let her go for my own sanity.

I had dismissed people based on attendance (basically when they stopped showing for shifts) before, but I had never let someone go for other reasons. I talked with a couple of people and my mom and I came up with a plan. The obvious first step was to make sure I had enough people to cover all of my shifts. It took a few months, but I finally had enough people to cover the majority of the shifts this month. Then, my mom and I came up with an outline for the conversation with the person. I did feel bad knowing how this would affect the person, but I had to do this for myself. Again, I’m not in HR, so I had no idea how this was going to go. It went as well as expected. It wasn’t a pleasant experience, but it had to be done.

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. Never in my wildest dreams did I ever think I’d be hiring, scheduling, and managing caregivers this long, but here I am. I know that my years of doing this are really numbered, so I’m really trying to relish the remaining years. Sometimes, we are forced into doing things that we have no desire to in order to accomplish our hopes and dreams or help someone accomplish theirs!

***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

Meet Karyn. As recently crowned Ms. Wheelchair Wisconsin, she 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. We’re so fortunate to her as a member of the Network.

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.

On June 16, the Senate Finance committee released proposed reconciliation language with some substantive changes to the Medicaid and Affordable Care Act provisions in the reconciliation bill that the House passed on May 22. This tracker summarizes and compares the health care provisions included in the Senate Finance and Senate HELP Committee with the House-passed version and current law.

View comparison