Self-Determination Network News: November/December 2025
Self-Determination Network News:
November/December 2025
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Federal Fallout Update
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 in this webinar:
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Action (and inaction) at Wisconsin’s state legislature. You can help shape what the legislature does (and doesn’t do).
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Congress is stuck on health care. What they do (or don’t) do in the next 10 days will impact everyone who uses health care.
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Administration making moves on SNAP, Special education, and vaccine messaging.
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Policy changes the administration is making that impact people with disabilities and families, and continued coverage of impacts of HR 1.
We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.
Wisconsin Medicaid Provider Portal
The Results Are In...
A new survey from the Survival Coalition of Wisconsin reveals the overwhelming amount of unpaid work shouldered by family caregivers statewide. More than 525 people shared their experiences this summer, offering a stark look at the challenges families face as they provide critical care—often stepping in to supplement paid services or to cover gaps when workers are unavailable or fail to show up.
Nearly all respondents are either enrolled in, or care for someone enrolled in, Wisconsin’s Medicaid home- and community-based long-term care programs. These programs supply personal care and home health support that help people remain in their communities and avoid costly Medicaid-funded nursing homes or other institutional settings.
We encourage you to not only share these results with your legislators, but also to tell them your personal story about the ongoing caregiver shortage.
Free Three-Part Survival Coalition Training on Community Organizing
Survival Coalition is hosting a series of community organizing trainings intended to strengthen collective action in the disability community. This is not self advocacy training, and will focus on how to join together around common issues. The target audiences for this training are grassroots activists, home care workers, and people with disabilities who are interested in joining together around shared concerns. Please see this flier for details.
Register here to commit to all three trainings.
The Winner is...
We loved seeing so many of you at the Self-Determination Conference in October. Thanks to everyone who participated in the discussion we had on the Network. There were many great responses to the the question: What does self-determination look like in your life? Congratulations to Nancy Alar who won the drawing for the gift card. We encourage you to keep adding to the discussion, so we can continue to help each other by collecting ideas.
The session recordings and materials from the 2025 Self-Determination Conference are now available online! If you weren't able to make it this year, save the date for next year and join us October 19-21, 2026!
Disability Advocacy Day 2026
Save the date for the 2026 Disability Advocacy Day on Thursday March 19th in Madison. We'll be sending out information about details and registration in a few weeks. We hope to see you there!
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.
In November, we shined the Spotlight on Meetra. When this author isn’t busy working on her next books or helping people with disabilities, she loves participating in adaptive sports and mentoring. Stop by last month's Member Spotlight to get to know Meetra.
For this month, we're shining the Spotlight on Carl. This determined advocate has recently found the power of his voice. After trekking to the state Capitol to raise awareness about low pay rates for home caregivers, he has eyes set on going cross country to do the same thing. Stop by this month's Member Spotlight to get to know Carl.
Who should we shine the spotlight on next?
In November's journal entry, Stacy discusses how social media has changed the lives of many people with disabilities. She talks about her love/hate relationship with it. What are your thoughts about social media? Do you have similar feelings?
Check out the Latest Videos!
The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the newest videos on the channel:
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Take five minutes to check out what's happening on the Self-Determination Network:
- Best Cities: Traveling when you use mobility devices can be challenging. Learn about some of the top cities in the world for accessibility.
- Self-Direction Big Ideas: From deinstitutionalization to self-direction to direct support professionals, a diverse mix of authors from around the Intellectual and Developmental Disability field share their thoughts on what made each idea so important. Check out this list of innovative ideas!
- Be Inspired: Executive Director of People First Wisconsin, Cindy Bentley, was recently featured in an episode of Wisconsin Life. Watch Cindy's incredible story.
- Impacts of Cuts: Watch as experts discuss how the federal cuts will impact real people.
- Inclusive Workforce Campaign: The Ike Center in Milwaukee launched a new campaign aimed to give people with disabilities new training and new employment opportunities. Read about this program.
- Caregiver Crisis Worsening: New research shows that the caregiver crisis is only worsening and more adults are serving as family caregivers. Learn what else the research revealed.
- A Caregiver's Survival Guide: This caregiver survival guide is made up of advice from caregivers. Check it out!
- Sibling Support Study: A student in the Social Welfare Program at UW-Madison is conducting a dissertation study focused on the experiences of siblings supporting their siblings with intellectual and developmental disabilities. Find out more about this study.
- Call for Proposals: Proposals to present at the 2026 Family Voices Leadership Conference are now being accepted. Applications are due December 19th.
- When Federal Cuts Hit: The Wisconsin Department of Health Services estimates billions of dollars in state cuts as Medicaid reductions move forward. Read about what a recent analysis found.
- Strengthening the Workforce: This paper offer states examples to strengthen their respite care workforce to help ensure that caregivers have access to high-quality respite care. Take a look at these ideas.
- Judge Orders White House to Restore Sign Language Interpreters: A U.S. District Judge ordered the White House to restore Sign Language interpretation at all press briefings by the President and the press secretary. Learn why this occurred.
- Approach to Aging Well: This report highlights macro-level trends shaping how individuals and families approach aging at home, implementation strategies that increase awareness and improve access to tools and resources, and specific action steps for key stakeholders including healthcare, financial services, employers, advocacy groups, community-based organizations, and government agencies. Read through it and think about what you can do.
- Listen: In this podcast, the financial and policy barriers that people with disabilities who rely on home-and-community-based services face are discussed. Listen to it to find out what advocates are worried about.
- Disability Justice Zine: Two Wisconsin artists have created a disability justice zine titled Crip Wisdoms: A Feminist Disability Studies Coloring Book. Learn about this piece.
- Expected Medicaid Cuts Create Fear: The impact of the expected cuts in Medicaid has put fear in many parents of children with disabilities. Read about one mother's worries.
- Disability Employment Historically High: A new report finds that the number of people with disabilities who are employed has grown over 30% since the start of COVID. Find out what this is attributed to.
- Passing to Note: Alice Wrong, a well-known national disability activist passed away. Read about her contributions in advocacy.
- AgrAbility of Wisconsin: AgrAbility is a a partnership between the University of Wisconsin-Madison Extension and Easter Seals Wisconsin, to support farmers with disabilities in continuing their agricultural work. Find out what the program provides.
- Accessibility Partnership: At least 40 businesses in Door County are voluntarily undergoing an analysis of their accessibility and allowing that information to be published for the public. Read about this partnership.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: The ADA’s Effective Communication Requirements in Healthcare Settings: December 10th, 1p.m. to 2:30p.m., Virtual
- Webinar: The Art of Accessibility: Implementing the ADA in Cultural Spaces: December 11th, 1p.m. to 2:30p.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.'
