News

Meals on Wheels, centers for independent living, and other critical programs for seniors and disabled people across the US are now at risk, as the US Department of Health and Human Services leaders dismantle the small agency that coordinates federal policy on aging and disability.

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A major home furnishings retailer is introducing a new line of products designed to make life easier for people with disabilities. Ikea said this month that it is rolling out a collection of accessible items for the home. The line known as Bäsingen includes a shower chair, two different step stools and a handful of bathroom accessories.

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Self-Determination Network News:

April 2025

Connect | Share |Learn | http://sdnetworkwi.org

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

• Fear of Losing Protections: An ongoing lawsuit challenges Section 504 of the Rehabilitation Act, which legally mandates access and accommodations across wide swaths of the public. Learn what losing protections would mean for millions of people.
• Changes to the Social Security Administration: Recently proposed changes to the Social Security Administration have advocates worried.  Read about what these changes entail.
• Five Key Facts about Medicaid Integrity: Program integrity efforts work to prevent and detect fraud, waste, and abuse, to increase program transparency and accountability, and to recover improperly used funds. Learn what these key things do to ensure integrity.
• Movie Star: In Wisconsin and beyond, Cindy Bentley is known as an incredible disability self-advocate. Learn about her new short film which highlights her story of determination and resilience.
• Risk of Work Requirements: Potential work requirements for people on Medicaid would further complicate things for people with disabilities. Find out why.
• Dismantling of the Administration for Community Living: Recently, the Trump administration announced the dismantling of the Administration for Community Living which oversees a wide range of services. Read about what what this could mean for people with disabilities.
• Proposed Improved Accessibility for 911 Networks: The Federal Communications Commission adopted a Further Notice of Proposed Rulemaking (FNPRM) proposing improvements to ensure the resiliency, reliability, interoperability, and accessibility of Next Generation 911 (NG911) networks Learn what these improvements will do.
• Voter Barriers Continue: Voting barriers for people with disabilities in Wisconsin continue. Read about how a lawsuit continues in the courts that would allow people with disabilities to use an electronic ballot to vote.
• REAL ID: When enforcement of the REAL ID Act begins May 7, 2025, the regular Wisconsin driver license or ID will no longer be accepted identification for domestic air travel or to enter a federal building or military base. Find out more about this new rule.
• Concerns over ACL Dismantling: Nearly half of staff at the Administration for Community Living have been terminated as part of broader Department of Health and Human Services (HHS) layoffs, disrupting funding distribution for disability programs nationwide Find out why advocates are concerned.
• Disrupting the Department of Education: The Education Department enforces disability rights in schools by distributing Individuals with Disabilities Education Act (IDEA) funds and investigating discrimination complaints. Learn why advocates are concerned with Trump transferring the responsibilities to Health and Human Services.
• Changing Course on Social Security Administration Requirements: The Trump administration is backing off the in-person requirements it announced for people needing services at Social Security Administration. Learn what made them change course.

Upcoming Events 

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

• Self-Direction for the Long Haul: April  16th, 1p.m. to 2p.m., Virtual
• Behind the Curtain: Understanding State Administration of Self-Direction: April 23rd, 1p.m. to 2p.m., Virtual
• People with Disabilities Love Self-Direction, But How Do Waiver Participants and Administrators Plan for the Future?: April 30th, 1p.m. to 2p.m., Virtual
• Webinar: Outdoor Dining, Retail, and Community Spaces: May 1st, 1:30p.m. to 3p.m., Virtual
• Circles of Life Conference 2025: May 8th & 9th, Wilderness Resort, Wisconsin Dells, WI
• Employment First Conference: May 19th & 20th, Kalahari  Resort, Wisconsin Dells, WI
• National Symposium on Quality Employment 2025: May 20th-22nd, Memorial Union, Madison WI 

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.

The Trump administration is backing off the in-person requirements it announced for people needing services at Social Security Administration. This requirement was originally created in efforts to prevent fraud, waste, and abuse. The administration claims that the pullback is due to new technology being in place, but many feel it's due to pushback from advocates.

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Changes to the Social Security Administration will create more hurdles for seniors and people with disabilities. People will no longer be able to call Social Security to apply or make any changes to their account. Instead, they will have to either travel to a Social Security office (which could be a 45 mile trip for some people) or do it online. These imposed changes are meant to " further safeguard Social Security records and benefits against fraudulent activity."

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In this month’s Member Spotlight, we’re catching up with Jason. This amazing self-advocate has played a pivotal role in turning one of Wisconsin’s state disability councils around over the last couple of years. He also has enjoyed helping family members navigate and advocate for what supports they need to be successful. Read more about what Jason has been up to in this month’s Member Spotlight!

We last shined the spotlight on you in 2015. Can you briefly reintroduce yourself and share a little bit of your story?

Jason Endres lives in Eau Claire with his wife Julie and their service dog Pinky Jellybean.  He shares that he’s a self-advocate for himself, but he truly advocates for others that cannot speak for themselves.

What kinds of advocacy projects are you involved with these days? 

Right now, like everyone, Jason is advocating for Medicaid not to be dismantled.  “Losing just one part of Medicaid will harmful for many people in the country,” he says.  

Statewide, Jason has been working with the Independent Living Council of Wisconsin. He explains that when he was appointed to be on the Council, they were a real mess and was in jeopardy of losing money from the federal government for not sending in reports and not having the right number of people on Council. “I helped with turning the council around and made many changes, so when I have to leave the Council in July, I feel I did my part,” he tells us.

Tell me some good news – what’s the most exciting happening for you (or in Wisconsin) in terms of self-determination

It’s really hard for Jason to think of exciting news for himself—especially in the political climate we are in right now—but, if he had to choose one, it’s helping his sister find resources for his nephew, Nick. He explains that Nick was having a real hard time at school, so he helped him get tested for Autism.  It turns out that his nephew was diagnosed when he was 13 years old. “So, we are all learning what’s best for Nick,” he says.

What resource can you share with us (website or article)? Why is it useful?

A resource Jason often recommends to people is the Independent Living Council of Wisconsin website. He explains that the Council does do a great deal of collaborating between the eight Independent Living Centers in Wisconsin. They are always looking for new board members, so if you are interested in finding out more details, he suggests going to their website.

What would be your dream vacation?

Jason has two dream vacations.  The first one is going to Australia, and the second is going Hawaii.

***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.

The Education Department enforces disability rights in schools by distributing Individuals with Disabilities Education Act (IDEA) funds and investigating discrimination complaints. Trump plans to transfer these responsibilities to Health and Human Services (HHS), raising concerns about separating special education from general education. Recent layoffs have already reduced enforcement capacity for disability rights violations.

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Nearly half of staff at the Administration for Community Living have been terminated as part of broader Department of Health and Human Services (HHS) layoffs, disrupting funding distribution for disability programs nationwide. The agency, which coordinates aging and disability services across 2,500 community organizations, is being dismantled with functions redistributed to other departments. Disability advocates fear program closures as funding notifications are delayed and administrative capacity has been gutted, with over 450 groups opposing the reorganization.

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The Wisconsin Intellectual and Developmental Disabilities and Mental Health (IDD-MH) System Improvement Community of Practice launched in December 2024. The project steering committee shared plans for turning the recommendations from last year's report into actions. Now, we're excited to share a few updates.

Recommendation 5.7 is now in progress

Recommendation 5.7 aims to expand the Certified Direct Care Professional (CDCP) training program to include modules related to IDD-MH. Learn more on page 68 of the report.

Here’s what to know:

• This work will connect people who provide care to people with IDD-MH needs with free training. This includes family members and paid caregivers.
• Training topics will help caregivers:
  • Understand IDD and mental health disorders.
  • Get strategies for effective communication and crisis prevention.
  • Recognize how mental health disorders present in people with developmental disabilities.
  • Know how health conditions connect with IDD and how they affect mood and behavior.
• The Wisconsin Department of Health Services, the University of Wisconsin-Green Bay, and members of the Community of Practice are working together to complete this work in 2025.

Visit the new Recommendation 5.7 webpage to learn more, see key milestones, and find ways to get involved.

Work on more recommendations is coming soon

The steering committee will start recruiting for two subcommittees in the next few weeks. As members of the Community of Practice, you'll have the chance to join these teams. Keep an eye on your email—we'll send information on signing up for subcommittees soon.