News

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.


With profound regret, we announce the passing of our dear friend and lifelong colleague, John W. O'Brien.

John passed peacefully in his sleep on the morning of June 27, 2025.   We welcome reflections and photos which can be sent to inclusionpress@inclusion.com.

Connie, Sean and Kevin have asked a few of us to assist in sharing the notice of our stunning collective and individual loss.

John was working this past week.  We were booked for another meeting on Friday.  He has been (as always) the master mind in assisting us to rethink and redesign the massive website collection of inclusion.com.  The first staggering task has been to enumerate and code hundreds of his articles so they will be more accessible to all of us.  As a living tribute to John and his life work, that will be done.  

Just last week John re-edited his own biography notes for the website (see below).  His humility and generosity of spirit glow – a tribute to six decades of relentless, tireless brilliance and creativity to create better community lives for people with disabilities. He never stopped searching for one more way to help us all to honor the gifts of people he loved – so they could thrive in the world of possibilities they so richly deserved – and were denied over and over.  John never gave up, never gave in.  He was always available as wise counsel, as a treasure trove of wisdoms from the world – always ready to share and to listen and glean yet another story to add to his and our understanding.

There will be a time to acknowledge his creative brilliance cataloged in books, articles, videos and presentations.  His eloquence was shared in hundreds of trainings in dozens of countries – always humble, always wise – and always ready to try the fragrances and spices of a new dish.  Thousands of us have spent hours, days, weeks and months soaking up his insights and strengthening our own convictions and commitments.  The tributes John would appreciate are not the glories of shinny bobbles, but rather the thousands of our individual reflections on what we learned and utilized – as he deepened our understanding and our spiritual connection to this life work.  

Some of us have been privileged to be colleagues and friends – for decades as we collaborated with John’s obsession to explore new ways to engage people’s hearts and minds in the service of people whose gifts have been denied, dismissed and discarded.

There were hundreds of SRV trainings, Citizen Advocacy events, 34 years of Summer Institutes, untold courses almost everywhere – and presentations to people of power and prestige in universities, governments, agencies, organizations – but most importantly families and individuals.  John never forgot the forgotten people and was forever ready to hear a story, celebrate a success and offer elder wisdom to survive hard times.

We suspect all of us – each in our own way – have a personal experience of John listening to us.  There was a way he sat, opening his hands and heart – and then looking into your eyes.  Although words would be spoken, when John listened with his eyes it was as if your story revealed itself – with or without words.  If you choose to write your own reflections, we are suggesting we all adopt one of John’s relentless campaigns – please use HELVETICA.

Like each of you, we are going to miss John – profoundly, daily, endlessly.  We’ll miss him as a gentle font of wisdom; we’ll miss his chuckle and occasional outburst of glee.  We’ll miss him as a buddy, a colleague and friend – a gentle giant of a man who taught us all so much and asked so little.  

And now John has moved on to continue his work with a higher calling.  And our task is to honor John’s work by drawing on the collection of resources he created, to relentlessly sustain the struggle for all to be fully included in meaningful lives in our communities.  That is how to pay tribute to John’s life of service to relationships and friendship with people with disabilities – and all of us.

We invite you to share your reflections, remembrances, and photos with us at inclusionpress@inclusion.com

Jack & Lynda

John in his own words

John recently revised his and Connie’s bio for Inclusion Press. Here’s what he wrote: 

John O’Brien and his wife and partner Connie Lyle O’Brien are lifelong  learners from social innovators who create better community lives with people with disabilities. In addition to co-developing some widely used person-centered planning approaches and hosting many learning opportunities for people with disabilities, their families, and human service workers, they are insightful and sensitive writers. Inclusion Press has been privileged to publish their books.
 

Two quotes from recent interviews with John (with thanks to David Hasbury).

On personhood…

“When we introduce the idea of person, we introduce the notion of mystery. People are not problems to be solved. They're a mystery, to inspire wonder…if we've had a good experience with our planning, there'll be a moment of wonder, of awesomeness. If I catch a glimpse of a person, that is an awesome mystery. They're sitting with us. And we have the privilege to appreciate what that uniqueness might mean.”

On the curiosity that comes with humility, and never ending work…

"I have probably found more ways to fail at influencing people, then anybody else, or anywhere else. And I'm obsessed about this pretty consistent failure. People are sometimes complimentary about what I've got to say. But if you look at the actual impact of lots of it, it doesn't add up to very much. That doesn't bother me probably as much as it should, so much as it keeps me curious. And so I keep looking around to see who else is doing something that might help, that might reduce my next failure, or make my next failure more interesting.”
 

Click here to read and watch some of John and Connie’s incredible contributions to all of us on their Change Makers page.
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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.

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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.

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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.

Dates for the Class of 2025/2026 are:

November 14 & 15, 2025 (Madison*)

December 12 & 13, 2025 (Virtual only)

January 16 & 17, 2026 (Virtual only)

February 27 & 28, 2026 (Virtual only)

April 3 & 4, 2026 (Madison*)

May 1 & 2, 2026 (Madison*)

*If attending in person is difficult, please contact Jenny Neugart, Project Manager at Jennifer.neugart@wisconsin.gov to discuss options.

Who can attend? 

We are looking for motivated individuals who want to create inclusive communities and are:

  • Parents or primary caregivers of children under 21 with developmental disabilities
  • Adults with developmental disabilities
  • Adult siblings or family members of individuals with developmental disabilities
  • We want cultural and geographic diversity in the group attending. Participants will be chosen by a team of parents, self-advocates, and professionals.

What is the cost? 

Partners is funded by BPDD and covers costs associated with the training, hotel rooms, meals, and materials.

Topics covered

  • History of the disability rights movement
  • Self-determination, self-advocacy, and person-centered planning
  • Disability policy and ways to change systems of support
  • Community engagement, organizing, and grassroots advocacy
  • School inclusion, integrated employment, and community-supported living
  • The legislative process and legislative advocacy
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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.

Sponsorship and Exhibitor applications are also open for the 2025 Self-Determination Conference. Please help us continue to move Self-Determination forward in Wisconsin.
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Stacy's Journal: Never Would I Have Imagined


By Stacy Ellingen, 2025-06-30

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

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Member Spotlight: Karyn


By SD Network, 2025-06-28

IMG_0964.jpegMeet 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.

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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

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Forbes released its first-ever Accessibility 100 list highlighting innovators and impact-makers in disability accessibility. The list spans categories including Communication, Education, Employment/Workplace, Entertainment/Arts, Influencer/Advocacy, Law/Government, Mobility, Products, Software, and Sports & Recreation.

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The Senate released their version of the "One Big Beautiful Bill Act," making even deeper Medicaid cuts than the House version while maintaining work requirements and new eligibility restrictions. The Senate draft would permanently prohibit implementation of Biden-era rules that streamlined Medicaid enrollment and imposed minimum staffing standards for long-term care facilities. Key changes include reducing retroactive Medicaid coverage from three months to one-two months, barring lawfully present immigrants from premium tax credits, and appropriating $200 million for states to implement work requirements by 2026.

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