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.