News

Self-Determination Network News:

October 2026

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Disability and Policy Forum

Action Alert: Potential Changes to the Census Could Impact Disability Services --Submit Public Comment

Stop by and Learn How to Be Entered into a Drawing for a Tablet!

We look forward to seeing many of you at the Self-Determination Conference next week. Please stop by the InControl Wisconsin exhibit table, grab some InControl Wisconsin swag, share your favorite piece of technology, and participate in a discussion for a chance to win a tablet. 

Not attending the conference? You can still have a chance to win. Just comment on this discussion by November 2nd. We will be drawing one name of those people who commented..

Federal Updates

Here are the recording and slides from the latest webinar that the Wisconsin Board for People with Developmental Disabilities puts on regarding the federal fallout.  Here are the topics discussed last week's webinar (we encourage you to sign up to receive the slide deck and links for the week of October 23rd and tune into the next live webinar Friday October 30th to get the latest):

• Policy changes the administration is making:
  

  • Federal government continues to back away from enforcement of disability rights;

  •  CDC removes disability questions from survey used to calculate funding to states;

  •  Census/SNAP data missing;

  • Federal agencies find new ways to not send money back to states;

  • ACA and Medicare rebates, who is getting them and where is the money coming from?;

  • Rule threatens nonprofits required to help voters with disabilities register;

  • Heath experts say states already have more fraud protections in place for home care than required by Feds.

• Continued coverage of impacts of HR 1.

  • Which states will face the biggest hits from HR 1?;
  • Refugees with disabilities lose Medicaid access; Federal immigration policy means fewer home care workers;
  • Missouri won’t use short-term hardship exemptions to help people keep Medicaid coverage;
  • Washington state proposes big cuts to I/DD services;
  • Georgia cuts ABA therapy rate for foster kids by 30%;
  • Indiana restarts eligibility determinations with tool that cost coverage for people with I/DD;
  • SNAP changes resulting in steep declines in enrollment.

We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.

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.
This month, we're shining the Spotlight on Priscilla. She is a spirited and independent self-advocate, award-winning leader, and microbusiness owner who brings unstoppable energy to mentoring, presenting, and enjoying car shows, but takes the most pride in being an amazing grandmother. Stop by this month's Member Spotlight to get to know Priscilla.
Who should we shine the spotlight on next?

Stacy’s Journal

"Having to constantly prove that you need supports is not only time-consuming, but it can be mentally and emotionally exhausting."

In this month's journal entry, Stacy talks about how many people who have disabilities find themselves constantly having to prove their need for services and supports they need. She discusses how it can not only be time-consuming, but it can also be emotionally draining at times. Do you have similar feelings?

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

• Call for Presenters: The 2027 Circles of Life Conference is looking for presentation proposals on topics like community building, IEPs, and self-care for its May event in the Wisconsin Dells, which connects families of children with disabilities with healthcare and education professionals. Learn more and consider submitting a proposal.
  
  
• Transportation Report: This report explains how transportation remains a major hurdle for disabled individuals and older adults, and it proposes a new coordinated framework to ensure they can access reliable transportation regardless of where they live. Find out what it suggests.
• Immigrant Workers Key: Immigrant workers make up about one-third of the U.S. homecare workforce, but recent policy changes ending Temporary Protected Status for Haitians threaten to worsen the severe caregiver shortage and disrupt patient care. Learn how this is damaging the already depleted caregiver workforce.
• Defining Home-and-Community Based Services:  To help measure program success and hold them accountable, two organizations reviewed over 200 definitions to create a single, shared definition of home- and community-based services that focuses on choice and independence for older adults and people with disabilities. Find out what the definitions are.
• New Movie: The upcoming movie Being Heumann marks a major milestone for disability representation in Hollywood by casting disabled actress Ruth Madeley to play activist Judith Heumann and having disabled writer Rebekah Taussig co-write the screenplay. Learn what this film is going to be about.
• Watch: In this interview, a disability rights advocate shares their experience of losing their sight and explains how they created an educational cartoon series to use humor to fight daily accessibility barriers, build empathy, and show that disability is a normal part of life. Watch to find out more.
• Letter to DOJ: A bipartisan group of 18 state governors sent a letter urging the U.S. Department of Justice to protect community-based services for people with disabilities and stop actions that could make it easier to force them into institution. Read about why this is so important.
• Waitlist for Employment Services: A severe funding shortage between late 2025 and mid-2026 forced Wisconsin's Division of Vocational Rehabilitation to put over 7,600 disabled job seekers on a months-long waitlist, causing many to miss out on employment opportunities and highlighting the risks of underfunding state programs. Learn why this should have never happened.
• Mental Health Training for Caregivers: A new, free online training course is available to help direct care workers learn how to better support adults with both intellectual and developmental disabilities and mental health needs. Find out more about this course.
• Caregiver Report: Although the U.S. direct care workforce has grown to nearly 5.4 million jobs to meet the needs of an aging population, workers—who are mostly women, people of color, and immigrants—still face severe financial hardships and low wages that are now threatened by upcoming federal policy changes. Find out why advocates are concerned.
• Caregiving Compendium: The Family Caregiving Compendium is an interactive online tool that tracks and compares unpassed federal policy proposals from the last ten years designed to support America's 63 million family caregivers across areas like financial aid, training, and paid leave. Check out this great resource.
• New Resource: The Home Modification Information Network is a free, newly updated online tool that connects individuals, caregivers, and professionals with local, state, and national resources to help make homes safer and more accessible Learn how to explore it.
• Disability Fellowship Program: Funded by Common Good Philanthropies, the Wisconsin Disability Policy Fellowship and Internship Program gives individuals with developmental disabilities and their families hands-on experience in advocacy, policy analysis, and community engagement to help them build careers in disability rights. Applications due October 28th.
• National Self-Direction Inventory: As of 2026, over two million older adults, people with disabilities, and veterans are using self-directed care to choose their own caregivers, an expanding model that state agencies find is 20 to 30 percent cheaper than traditional agencies and helps fix caregiver shortages by letting participants hire family and friends. Learn what else you can find in the National Self-Direction Inventory.
• Concerns over Availability of Services: A severe shortage of caregivers and upcoming Medicaid funding cuts are forcing disability service providers to turn away new clients and reduce programs, leaving vulnerable people at risk of losing essential care. Read about why advocates are deeply concerned.

Upcoming Events 

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

• Disability and Aging Policy Forum: October 13th, 11a.m., Virtual 
• Self Determination Conference 2026: October 19th-21st, Kalahari Resort, Wisconsin Dells WI
• Webinar: Accessibility and Air Travel: November 5th, 1:30p.m. to 3p.m., Virtual
• 2026 Fall ADA Coordinator Conference: November 16th-18th, 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 Priscilla: a powerhouse self-advocate, award-winning leader, and microbusiness owner who refuses to let life’s unexpected twists slow her down! Whether she is commanding the stage as a conference presenter, mentoring peers, or checking out sleek rides at local car and bike shows, she brings unstoppable energy to everything she does. But of all her impressive titles, there is one she wears with the absolute most pride: being an amazing grandmother. Spunky, resilient, and fiercely independent, Priscilla is the true author of her own story, proving every day that challenges are just part of the adventure.

How are you involved with self-determination? What advocacy work are you involved in?
Priscilla is a self-advocate, peer mentor, conference presenter, moderator, microbusiness owner, and the winner of the 2025 Diehard Award. In 2019, her life changed drastically when her previously hidden, invisible disabilities began becoming visible, bringing unpredictable daily challenges like temporary speech loss, severe pain that restricts limb movement, and seizure-like episodes triggered by sensory inputs. Her journey with self-determination became deeply personal when it was suggested that she move into a group home after living independently for over 30 years. Refusing to be put into a box that did not fit her life, she fought back alongside her cousin and employer at C. Renee Consulting, ultimately securing the necessary supports to remain safely in her own home. Today, she uses her experiences to encourage others with disabilities to find and use their voices, firmly believing that they belong in every conversation where decisions are being made about their lives. Reflecting on her resilience, she notes, "Sometimes I feel like my brain is forever fighting against my desire to be great—but I keep pushing forward." 

Tell us some good news! What's the most exciting thing happening for you—or in Wisconsin—in terms of self-determination?
Priscilla is deeply enthusiastic about the growth of a stronger community of self-advocates and peer mentors in Wisconsin. She highlights their collective efforts to help individuals with disabilities learn how to use their voices, understand their choices, and step into leadership roles within their own lives and communities. To counter the common issue of outside decisions being made without including the people they affect, she emphasizes a straightforward approach to understanding people with disabilities, asserting, "Listen to us!" Through sharing experiences, asking questions, and standing up for their rights, self-advocates are actively driving change. She is particularly focused on engaging high school students and young adults early on so they can grasp the principles of self-advocacy and self-determination before others attempt to define their futures. Ultimately, she sees a shifting landscape where individuals with disabilities are not merely asking to be heard, but are actively becoming mentors, presenters, business owners, and community leaders who are empowering the next generation to recognize that their voices truly matter.

What are some of your hobbies?
When Priscilla is not busy advocating, mentoring, presenting, or managing her business, she fills her time with crafting, cooking, traveling, and attending car and bike shows. However, her absolute favorite role in life is being an amazing grandmother, a title she wears with immense pride. Spending time with her family brings her immense joy and serves as a powerful reminder that despite life's daily challenges, there is still so much to celebrate and enjoy. For her, these moments are all about family, laughter, love, and making lasting memories with the people who mean the absolute most to her. Reflecting on the happiness her family brings, she shares, "Being a grandmother brings me so much joy."

Any final thoughts you'd like to share?
Priscilla acknowledges that her journey has not always been easy, and she continues to write her own story every single day. Through her experiences, she has learned that self-determination is far more than a program, policy, or phrase—it is deeply personal. For her, it means having the freedom to decide where she lives, choosing who supports her, speaking up when something feels wrong, and having people truly listen to her instead of speaking for her. While her disabilities are a part of her story, they do not define the whole story. She is a self-advocate, peer mentor, presenter, business owner, grandmother, and leader who ultimately remains the sole person who gets to decide what comes next in her life.

***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.

A teenager taking the exam to get their driver’s license. A soldier completing a test to upgrade their rank. Someone taking the bar exam in hopes of getting into law school. An athlete gets a medical exam in order to participate in sports. There are many different types of exams that people do. In most cases, the exams are tools that prove whether people are capable or incapable of doing something. Generally speaking, people want to “pass” the exam, so that they are able to move forward with whatever it is that they are trying to accomplish. A lot of the time, “passing” the exam is an exciting accomplishment; however, there are times when doing well on a test or screen isn’t necessarily a positive thing.

A few years ago, I wrote a journal entry about how many times, people—especially those who have disabilities--are unintentionally interrogated.  I talked about how people with disabilities often have to repeatedly answer questions about what they’re capable and incapable of doing. The questions are asked in order to determine how much support and funding for services the individual receives. Despite the screeners being nice and understanding, anyone who has had to go through a functional screen, knows that they are usually pretty emotionally draining. Why, you ask? Simply because you’re asked about all of your abilities and inabilities. As I pointed out in that entry, after doing a couple of them, you learn to make yourself sound as “needy” as possible, so you can get the support you need. While I don’t lie, I’ve learned to make myself sounds as vulnerable as possible when I do those screens. I was lucky enough to have both my functional screen and my screen for Self-Directed Personal Care hours within weeks of each other this year (insert sarcasm).

Through the grapevine, I had heard that many people’s budgets and personal care hours had decreased this year even though nothing had changed. Sure enough, my personal care hours decreased by a few hours. While, it’s not particularly surprising given what’s happening federally, it’s incredibly frustrating! So, what happens when budgets decrease or personal care hours decrease? Depending on the situation, sometimes, if the decrease is not significant, a person might be able to make do with it by rearranging some things in their budget; however, often, people can’t make do. What happens when people are not able to make it work without the given support? In the IRIS program, participants can request a Budget Amendment for a particular service or support.

I may have written about going through a Budget Amendment process in past entries. Depending on what the amendment is for, in addition to the consultant having to do lots of paperwork, participants have to provide different documentation for it. Since my personal care hours decreased, I need more Supportive Home Care hours to make up for them. As I’ve explained before, I have 16 hours of care per day which equates to two eight-hour shifts per day. In order to maintain that, I will need a couple more hours of Supportive Home Care. My current consultant is amazing and she’s on top of everything. As soon as she got the results of the screens, she emailed me right away realizing that we’d probably need to do a Budget Amendment. As she started the paperwork, she emailed me saying that she needed an updated caregiver task schedule. What this is is a document laying out what the caregiver does for every 15-minute segment for the entire 16 hours that they are here. I initially had to do this about two years ago when my hours significantly increased. Think about that. That’s 64 time increments to have to fill with a specific task. While we did it because we had to, it’s just not realistic for someone to person to plan out their life in 15-minute segments--that’s just not how life works. This is especially frustrating to have to do when I have notes from two different doctors stating I need 24-hour care. One would think that a doctor’s note would hold enough necessity, but that’s not the case. Personally, it doesn’t make any sense to me. As it turns out, we ended up not needing to submit a request for a Budget Amendment this time because my regular IRIS budget increased enough that we were able to make everything work, but it could all change next year when I’m screened again.

Supports and services aren’t the only things that people who have disabilities have to go through hoops in order to prove they need. As I’ve talked about in previous entries, Durable Medical Equipment (DME) is another thing that people often have to prove they need in order to get it funded. It often takes many justification notes and therapist evaluation reports in order to get a piece of equipment covered. More often than not, this process takes months. Depending on what the equipment is, a person could be left not able to live their life while waiting for funding to get approved. In my opinion, this is one of the most major flaws in the so-called system.

Social Security and Supplemental Security Income are also things that require proof on a regular basis. Additionally, Medicaid requires a rigorous review annually (in Wisconsin). Obviously, a lot of these benefits are interconnected, but individuals still have to provide proof that they need it. The renewal process for these benefits can be especially daunting because if you miss checking a box or don’t upload documentation correctly, you’re at-risk of losing your benefits that provide the supports that you need to survive.

While some people have conditions that change over time, many people don’t. Having to constantly prove that you need supports is not only time-consuming, but it can be mentally and emotionally exhausting. As I’ve said before, many of us don’t think about having a disability until circumstances present themselves. When you’re constantly having to prove you need services and supports, it’s often a reality check of your circumstances. Unfortunately, I don’t see anything changing in the near future—in fact, given today’s political environment, it may get worse before it gets better. That’s why it’s so important that we keep relentlessly advocating for what we need!

***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.