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Meet Julie. This avid hockey fan has been through a lot in the last few years. Due to some things that happened to her, she went from being an occupational therapist to needing supports and services herself. She’s learning to accept her ‘new normal’, and she uses humor often deflect the chaos going on in the system. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little bit about yourself
Julie was a pediatric occupational therapist and a manager at a clinic; she also worked with the babies at a local hospital in the NICU. “My forte was older children and babies,” she says. She also worked and loved the Early Intervention System. Since she lives right on the border, most her stuff is/was in Illinois. She saw some kids in the water near Kenosha at the Pleasant Prairie RecPlex as well where she worked with children of all varying abilities. She had her OT license in both IL and WI. She shares that she was trained in a variety of different skills, but she was certified in aquatics and started the aquatics program at her clinic for many children. She also took older children with various abilities into the Boundary Waters and the St. Croix River. “I taught everything from adaptive paddling to cooking on an open fire,” she tells us. Personally, she did a half Iron Man for cancer, two marathons, and a multitude of half marathons and triathlons. She loved hiking with her dog Porter (and at that time Remmie too) and husband Kelly. “I also loved kayaking on Lake Elizabeth which is just a block down from my house- the main reason why we have this house,” she exclaims!

Then, after nearly 20 years of treating and being active, Julie suffered a bilateral Pons vertebral dissection or in other words, a severe stroke. Doctors said it was due to COVID, even though as a health care worker, she was vaccinated. She was in a drug induced coma for over a week. “I will always remember on 7-2-21, I went walking into the ER and then months later when I was finally discharged, I could not walk, I couldn’t talk, I had double vision and numerous other things,” she shares. Due to being so sick, she was not moved very much and suffered a severe sacral wound that required two surgeries. She shares that ,to this day, she’s still dealing with this. Unfortunately, she doesn’t remember much of her hospital stay. She remembers it being a dark time for her because she went to completely independent to dependent. “Even though, I worked with children bridging out to the ‘real world’, I was not capable of doing this or at least I thought so,” she says.  She’s trying to accept and manage her new normal. Thankfully, even though she was in pediatrics, she has many resources available to her. She jokes, “sometimes too many- you know the adage ‘do I say, not as I do’- well that totally rang true!” She shares that she uses a wheelchair, but her vision has slightly improved. She still has difficult writing and typing. “Yes! I am an ot that has difficulty writing, typing, throwing a ball and talking normally,” she tells us. She hasn’t held a baby since her stroke because, right now, that is too hard for her both emotionally and physically. Even though her talking has improved, she still has not talked on the phone. “Yes, I definitely could use adapted equipment to help me, but what I have found is that I tend to lean on the adaptations and not push myself, so, for the more expensive AT (assistive technology), I have tried to do without,” she explains. She still renews her ot license for IL even though she can’t treat, and she has renewed her aquatic certification even though she can’t swim or breathe properly in the water. She shares that she lost her job in the NICU right away and she isn’t a manager anymore. However, thankfully, the owner of the clinic where she was a manager is one of her best friends. She’s able to go there to the meetings and she’s involved as much as possible, but she admits is hard. “I have seen 2 managers go through and of course you compare. I miss treating more than ever and I see the younger therapists and I yearn to be where they are,” she tells us. She has most of her cognitive abilities, but she  realizes that she has lost some. “I have cognitive fog often. I definitely cannot say what I mean. It’s amazing on what all the things I want to say, but can’t,” she explains. She has to take continuing education for her license, but most people don’t know what she has gone through. “I have no idea what my next path will be, but, obviously, it will have something to do with abilities and awareness. I may or may not be ready for it but I will adjust,” she enthusiastically says!

How are you involved with self-determination? What advocacy things are you involved in?
Advocacy is still fairly new for Julie. “What I have come across- if it’s visible, people are more interested, but, if it’s not visible, then I think most people are ignorant,” she tells us.  She’s involved with the Independent Living Council of Wisconsin where she serves as Secretary and the Assistive Technology Council of Wisconsin. She’s also on the board for Camp Avanti which is the camp where she used to take the kids to the St. Croix River. She explains that the camp was in Amery, but it just moved to MN. She also tries to visit her representative, Bryan Steil, when he’s in town, but it can be challenging because she doesn’t drive and doesn’t talk very well.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Due to the system being in such chaos, Julie often uses humor. “Yes, it can be a deflection, and often because I do not talk very well, people don’t get my jokes, but one has to relax and smile at the stupid things that might have been done or said,” she says.

What tip or resource would you like to share with people who want to be more self-determined?
To be more self-determined, Julie’s tip would be to learn from your mistakes; you will make plenty and that’s ok. She also encourages people to do what makes you happy. She explains that if you want to write your Senator, then do that.  “I’m not a huge advocate because that stuff doesn’t make me happy and, for me, it takes me forever to do it. Life is too short,” she tells us.

What are some of your hobbies?
Julie loves to listen to audiobooks, take or watch her dog out to play in the backyard, exercise, go for hikes, talk to her dog (she doesn’t have to repeat!), and laugh. She also enjoys just hanging out with her husband, watching movies, and especially watching college hockey. Her favorite team is the University of North Dakota. Why UND, you ask? She explains that her brother, her husband, and Jonathan Toews (he used to play in the NHL for the Blackhawks—now, he’s on the Jets!) all went there!

***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.

This episode of The Advocacy Life Podcast, hosted by disability advocate Kevin Núñez, uses a pizza analogy to break down how government and politics work in an accessible, conversational way — covering topics like majority rule, representative democracy, and the Constitution. The episode emphasizes that disability advocates need to understand political history and civics to effectively fight for the resources and rights their community needs. Núñez closes with a call to action, urging advocates to stay engaged and hold elected officials accountable rather than sitting on the sidelines.

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The One Big Beautiful Bill Act requires states to check Medicaid eligibility for adults covered through Medicaid expansion every six months instead of annually, beginning with renewals scheduled after December 31, 2026 — meaning many people will need to submit paperwork twice a year just to maintain their coverage. For people with disabilities, this increased frequency creates significant risks: inaccessible forms, portals, and phone systems make it easy to lose coverage due to paperwork issues rather than actual changes in eligibility. The article urges those affected to connect with their state Medicaid agency, use Medicaid.gov's help tools, or call 211 to find local assistance navigating the more frequent renewal process.

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A new issue brief explains that while Medicaid home care — which serves over 5 million people with disabilities and older adults — does carry a higher risk of fraud due to the in-home nature of services, federal and state governments have implemented significant safeguards including electronic visit verification and data analytics, and fraud convictions in this area have actually declined since those tools were put in place. The piece cautions that Centers for Medicare & Medicaid Services (CMS) provider spending data can easily lead to misleading conclusions because it lacks important context and excludes major spending categories like hospitals.

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Across the country, caregivers are sounding the alarm about what Medicaid cuts mean for the people they love. For families caring for children with complex medical needs, adults with significant disabilities, and aging parents with Alzheimer's, Medicaid pays for home aides, specialized equipment, therapies, and community-based services that private insurance often refuses to cover. Without it, many say their loved ones would be forced into institutions, pushed into medical bankruptcy, or left without life-saving care. Their stories make clear that for millions of Americans, Medicaid is not optional — it is survival.

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Switching insurance companies. Changing jobs. Switching doctors. Changing software programs. There are millions of different types of things that people change. Some changes are by choice while others are determined by situations or forced on people by circumstances out of their control. While some changes people have input in; others we don’t. When we don’t have input in the changes, it usually causes some tension and uneasy feeling. As human beings, we like say and having control over what’s happening in our lives. Generally speaking, things work better when people have some say in what is going on in their lives. Granted, there are exceptions to this, but, normally, things work better when people have some choice and input.

I first heard some chatter about Wisconsin moving to one Fiscal Employment Agency (FEA) for the IRIS Program several months ago. For those who don’t know what a FEA does, it basically does background checks, approval of workers, payroll, etc…for IRIS participants. Currently, there are three different FEAs that people can choose from. There used to be a couple more, but a couple have pulled out in recent years. FEAs are really what make the program run. In the 17 years I’ve been in the IRIS Program, I’ve been with three FEAs at different times. Each has its pros and cons. From worker approval times to timely payment of workers, to Electronic Visit Verification (EVV) systems, each FEA has their own positives and negatives.

IRIS participants know that dealing with a FEA can be incredibly frustrating sometimes. Just as an example—I get tickets for cab rides each month. I have to send in an order form at the beginning of each month for the next month’s tickets. It takes a month for the FEA to process the order and send payment to the vendor. Well, I hadn’t received my tickets for March yet, so I emailed the cab company. Come to find out, they hadn’t received payment from my FEA yet. My mom called my FEA and found out that the payment was delayed getting sent. Obviously, it’s not the end of the world that I didn’t get my cab tickets on time, but it’s a recent example of how frustrating it can be. Over the years, I’ve lost multiple workers due to not being paid on time or it taking too long for new people to get approved. I can’t even explain just how frustrating that is!

When I first heard that the state was planning to move to one FEA, admittedly, I didn’t pay as much attention as I should have. I was dealing with other immediate issues, and it wasn’t on my radar like it should have been. I don’t think it was widely advertised either. Unless people were involved in advocacy, they may not have been aware of this. I imagine that if was publicized a little more there would have likely been more pushback from advocates. The whole point of the IRIS Program about being able to self-direct and having choice. In my opinion, going to having one FEA completely dismantles the principle of the program.

The Request for Proposals went out awhile ago, and, just a few weeks ago, it was announced that a “notice of intent” was given to a FEA. As this news circulated in the disability community, people began talking. For starters, the one that was chosen would be completely new to Wisconsin—it wasn’t given to any of the three existing ones. A simple Google search of the name revealed that the FEA that the department intends to go with has had major problems in other states.  The kinds of issues vary from workers not being paid to it taking several weeks for workers to get approved. The opposite of what participants need—especially in this day and age where there is so much uncertainty surrounding the future of long-term care.

I realize that the Average Joe probably doesn’t understand why this potential change is such a big deal. It’s a complicated system and, for IRIS participants, the FEA is ultimately who physically funds our services and supports we rely on in order to live our daily lives.Amidst of already uncertain times, the last thing participants want to hear is that we’re going to have to deal with a whole new company and system that is known to have major problems.

Advocates weren’t given the opportunity to provide input on this, or if there was, it wasn’t well advertised. Doing this in a program that is supposedly “self-directed” is a huge step backwards. Rumor has it that there are a couple companies contesting the decision, so we’ll see what happens with that. Meanwhile, advocates are talking with the department and legislators telling them that this whole thing is a bad decision and how it would potentially impact people’s lives.

While we don’t know the outcome of this, it demonstrates how a seemingly minor change to many has the potential to completely disrupt life for others. The disability community will continue to advocate and hope for the best on this issue while also realizing that we may have to continue to advocate on this even after the final outcome has been has been decided. 

Change can be hard for everyone. While some changes are unavoidable, others are. When a change of this magnitude has the potential to change so much, input from those who’s lives it’s going to affect should be taken into consideration. As cliché as it sounds, the saying, “nothing about us, without us,” is poignant in this situation. As frustrating as it is, we will continue to advocate and let our voices be heard!

***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

Wisconsin's IRIS program is transitioning to a single contractor to manage payroll and background checks for caregivers, a move that has sparked significant concern among enrolled adults with disabilities. Participants worry that the administrative shift could lead to payment delays for their care workers, potentially making it harder to retain the staff they rely on for essential daily needs like showering and mobility. Because the program allows individuals to live independently rather than in institutional settings, any disruption in caregiver pay is seen as a direct threat to their ability to remain in their own homes.

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A new study from Special Olympics Health published in JAMA Network Open reveals that adults with intellectual and developmental disabilities (IDD) face a significant mental health crisis, being over nine times more likely to report anxiety or depression than those without disabilities. Despite having a higher symptom burden and being more likely to take medication, these individuals face massive systemic barriers to therapy, including high costs, a shortage of trained providers, and "diagnostic overshadowing." However, the research also highlights a path forward: participation in Special Olympics programming was found to reduce the likelihood of a depression diagnosis by 49%, underscoring the vital role of social connection and physical activity in closing these care gaps.

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Are you interested in presenting at the 2026 Self-Determination Conference?  We are seeking session proposals for Tuesday, October 20 & Wednesday, October 21, 2026.    

Click here to fill out the presenter form online. presenter portal.

This year’s theme: The Power of Self-Determination; Technology, Community and You will help people with disabilities lead more Self-Determined lives by offering tools to plan the life they want to live in the communities they choose!

Things to know when submitting a proposal:

• Proposals must include a self-advocate(s) as a lead or co-presenter.
• Panels should be limited to no more than 3 people. 
• Conference sessions must support Self-Determination and Self-Directed principles.

•  Sessions will be all in-person. Presenters must attend the conference
   in-person.

• Presentations should focus on practical, take-home strategies that people can implement in their lives.
• Sessions should not promote specific agencies or products. 
• Repeat or similar sessions from previous conferences will not be considered.
• Sessions will be 1.25 hours in length. Self-Advocate sessions will be 30 minutes in length.
• A typical session has an audience of 50-75 attendees.

If your session is accepted:

• Handouts: Presenters agree to submit the PowerPoint and other materials through the online portal by September 23, 2026. You are responsible for providing 50-75 copies of your materials for your in-person session. Please use plain language. 
• Equipment: A screen, A/V cart, LCD projector, laptop, and microphone will be provided in each breakout room. Bring your presentation on a flash drive or use your own laptop. 
• Presenters must register for the conference. Presenters must attend the conference in-person.

*By completing this form, presenters agree to turn in all materials and information by September 23, 2026. 

Submissions are due by noon on May 5, 2026.