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Self-Determination Network News: September 2025

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By: SD Network
Posted in: Network News

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Self-Determination Network News:

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

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Have You Taken the Survey? 

The Survival Coalition of state disability organizations is conducting this survey of people with disabilities and older adults who use Medicaid, their caregivers, and their providers. The purpose of the survey is to find out how much time and effort currently goes into Medicaid eligibility, how much unpaid care already is provided, and what people are most concerned about with the more than $900-990 billion in Medicaid cuts that were signed into law July 4th, 2025.  It will close this Friday, September 19th. Take survey

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Last Chance to Register!  

Have you registered for the 2025 Self-Determination Conference? This year's conference will be held October 20th-22nd at the Kalahari Resort in Wisconsin Dells. Self-Determination by Design: Your Life, Your Way is the theme this year. Registration closes next Thursday, September 25th.  Learn more and register today!

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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 this month's Spotlight, we're catching up with Mike. This amazing self-advocate is the founder of the Wisconsin Augmentative Alternative Communication Network. Stop by this month's Member Spotlight to get to know Mike.    

Who should we shine the spotlight on next?

128 Stacy’s Journal


"While, I can’t lie—I wish more than anything I could spend my money on things like gas for a vehicle or new sports equipment for my children—I’m grateful that I have a great family and I have at least some ability to purchase those extra but essential things that help me live the best life possible!"

In this month's journal entry, Stacy discusses how people with disabilities often have different out-of-pocket expenses than the average adult. What types of unique expenses do you have?







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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).



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

  • New Cafe: A new cafe in one Wisconsin city is not only serving up delicious coffee and treats, it's also providing jobs for people with all abilities. Learn where this new cafe is.
  • Compounded Impact: President Trump signed an executive order that would make it easier for states to remove unhoused people from streets.  Find out why advocates are concerned about the compounded impacts of all these changes for people with disabilities.
  • Institutionalization Fears: Advocates are concerned after a White House order calls for greater reliance on institutionalization threatens decades of precedent on disability rights.  Read about why advocates are concerned.
  • Conditions Added: The Social Security Administration has recently added 13 new conditions to its Compassionate Allowances list, which will enable more people to access disability benefits more quickly.  Learn what conditions were added.
  • Hidden Costs: With the passage of the big Republican tax and spending bill, the federal government is poised to reduce support for Medicaid and the insurance marketplaces established by the Affordable Care Act.  Read about the hidden cuts that are in this bill.
  • New Caregiving Report: A new report reveals that 63 million people in this country now provides unpaid caregiving, with many facing financial and health challenges. Find out what else the report said.
  • Medicaid Policy Timeline: The National Association of Medicaid Directors released a timeline outlining key Medicaid policy changes in the One Big Beautiful Bill Act that require immediate state planning. Take a look.
  • Listen: This summer marked the 60th anniversary of Medicare and Medicaid, the twin government programs that have shaped the health care system into what it is today. Listen to this podcast to learn about the history, significance, and future of these programs.
  • Two California Sisters Rely on Medicaid: Two sisters in California rely on  In-Home Supportive Services- a self-direction program that allows them to hire and manage their own caregivers. Learn about why these sisters now fear for their independence.
  • Possible End to Mail-in Voting: President Trump announced plans for an executive order to eliminate mail-in voting. Find out why people with disabilities are worried.
  • New Program: Medicare's new GUIDE program pays up to $2,500 annually for respite care for dementia patients, marking the first time Medicare has supported unpaid family caregivers. Read more about this program.
  • Caregiver Respite Resources: The National Respite Network has released new caregiver respite resources. Check it out.
  • Public Health Webpages Restored: After many went dark to comply with an executive order on DEI, many public health webpages have been restored. Learn about why this happened.
  • Disability Benefits Cut: Hundreds of thousands of poor Americans are poised to get their disability benefits cut, as the Trump administration moves to reverse a Biden-era change. Find out what benefits are in jeopardy. 

128 Upcoming Events 

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

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. 

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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.'

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