News
Self-Determination Network News:
April 2026
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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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State:
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What is signed or vetoed and a new Medicaid shortfall estimate.
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Congress:
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Considering two separate reconciliation bills, one to skirt the normal federal budget process, the other to make deeper cuts to Medicaid/Medicare to offset spending increases.
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President releases budget proposal, includes cuts to disability programs
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Policy changes the administration is making:
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New ACA rules and navigator cuts make it harder for people in the ACA Marketplace,
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federal government finding few undocumented people in Medicaid,
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ICE using Medicaid data despite court order,
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DOJ misleading courts on how its using voter roll data,
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President issues executive order to create national voter list and restrictions on mail in voting.
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Continued coverage of impacts of HR 1.
- HR 1 Medicaid cuts hitting state budgets, community health centers, disability services, family caregivers.
- New projections on how many people will lose health care coverage,
- Companies making money off HR 1 changes.
- ACA Marketplace plans may face surprises at tax time..
We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.
Call for Presenter Proposals for the 2026 Self-Determination Conference
This year's Self-Determination Conference will be held October 19th-21st at the Kalahari Resort in Wisconsin Dells. The theme will be The Power of Self-Determination: Technology, Community, and You. Proposals to present on October 20th and 21st are now being accepted. Proposals are due by noon on May 5th. Learn more and submit a proposal today!
Call for Exhibitors
Exhibit tables will be available on Tuesday, Oct. 20 and Wednesday, Oct. 21, 2026. Space is limited and only applications from exhibitors that directly support self-determination and self-direction in WI will be accepted. All applications will be reviewed by a committee and selected based on interest, needs, variety, and mission of the conference. Placement at the Conference will be on a first come basis. Applications are due July 20th.
Calling all Micro Business Owners and Artists!
Micro businesses run and created by people with disabilities are encouraged to apply. Artists can sell their products and/or services. Applications are due July 20th.
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.
For this month, we're shining the Spotlight on Daniel. This fun-loving athlete is becoming a leader in his community by volunteering and sharing his story. Stop by this month's Member Spotlight to get to know Daniel.
Who should we shine the spotlight on next?
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:
- Combating Fraud Claims: The Trump Administration is reportedly using claims of "fraud, waste, and abuse" as a pretext to withhold billions in Medicaid funding from Democratic-led state. Learn about what advocates are arguing.
- Declining Enrollment: A recent report reveals that for the third year in a row the total Medicaid and CHIP enrollment declined. Read about why the decline is expected to continue.
- Finding Long-term Care: Finding long-term care can be challenging. Find out why Aging and Disability Resource Centers (ADRCs) are the best places to start.
- Adaptive Crayons: A UW Health resident, has developed a project to create adaptive crayons specifically designed for children and adults with developmental disabilities. Read about these crayons.
- New Wisconsin Bill Worries Advocates: A bill recently passed by the Wisconsin Legislature and sent to Governor Tony Evers aims to streamline the discharge process for hospital patients deemed incapacitated who lack a designated healthcare agent. Find out why disability advocacy groups are worried.
- Act Threatens Accessible Voting: The SAVE America Act (also known as the Safeguard American Voter Eligibility Act) is a proposed federal bill that would mandate in-person proof of citizenship for voter registration and require government-issued photo ID for both in-person and mail-in voting. Learn why disability advocates are infuriated by this.
- Legacy Continues to Empower: Judy Heumann, often hailed as the "Mother of the Disability Rights Movement," was a transformative leader whose advocacy shaped landmark civil rights legislation including Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act. Find out how her legacy continues to empower the disability community.
- Long-Term Care Becoming More Unaffordable: A new report highlights a sharp decline in the affordability of long-term services and supports (LTSS) for middle-class Americans between 2019 and 2024, reversing a decade of gradual improvement. Read about why.
- Inclusive Fitness: An organization in Milwaukee is highlighting its commitment to inclusive fitness through specialized programming. Learn what it focuses on.
- Climate Crisis: Experts warn that due to the combination of the federal cuts and the dismantling of FEMA's resilience programs has left care providers unable to plan for emergencies. Read about why this forcing elderly and people with disabilities back into institutional settings during extreme weather events.
- Making a Plan is Key: To help family caregivers navigate the daunting "what if I die first?" scenario, experts emphasize the necessity of creating a formal, evolving contingency plan that prioritizes the wishes of the person receiving care. Learn what should be included in this plan.
- Tony Coelho Media Scholarship: The American Association of People with Disabilities announced that the applications for the 2026 Tony Coelho Media Scholarship are now being accepted. Find out more about this scholarship.
- Participate in a Research Study: The University of Michigan is conducting a study for adults with cerebral palsy to help inform future research and healthcare improvements. Find out more about this study.
- Proposal to Reclassify Home Care Workers: The U.S. Department of Labor has proposed a rule that simplifies the process for employers to classify home care workers as independent contractors, a move critics argue will lead to widespread misclassification. Learn why advocates say this is a bad idea. Comments due April 28th.
- Autism Acceptable Day: Early in April, Autism Acceptable Day was celebrated at the State Capitol. Read Representative Stubbs' statement about it.
- Eliminating Programs: According to a new report, President Trump’s fiscal year budget proposal calls for significant cuts to federal disability infrastructure, including the elimination of the Administration for Community Living and the zeroing out of funding for University Centers for Excellence in Developmental Disabilities and Voting Access for Individuals with Disabilities. Read about what this means.
- Federal Digital Accessibility Mandates: Starting later this month, new federal digital accessibility mandates go into effect. Find out what this means for federal websites and documents.
Here's a sample of upcoming events listed on the Self-Determination Network:
- 2026 Family Voices Leadership Conference: April 15th & 16th, Virtual
- National Self-Direction Conference: May 27th-29th, Minneapolis, MN
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.
Starting April 24, new federal updates to the Americans with Disabilities Act (ADA) will require the University of Wisconsin-Madison to make all digital resources accessible by default rather than by request. These mandates include technical standards such as live captions, audio transcriptions, alternative text for images, and keyboard-only navigation. To ensure compliance and avoid potential losses in federal funding, the university has launched a Digital Accessibility Hub to train faculty and staff on these Level AA guidelines, aiming to provide disabled students with seamless, immediate access to all online course materials and university web content.
DISABILITY SCOOP: Trump Budget Calls For Eliminating Key Disability Programs
By SD Network, 2026-04-08
According to a recent report from Disability Scoop, President Trump’s fiscal year budget proposal calls for significant cuts to federal disability infrastructure, including the elimination of the Administration for Community Living and the zeroing out of funding for University Centers for Excellence in Developmental Disabilities and Voting Access for Individuals with Disabilities. While the plan includes a $100 million increase for Centers for Independent Living and seeks to provide states with more flexibility by consolidating several Individuals with Disabilities Education Act (IDEA) programs into broader grants, advocacy groups warn that these changes could dismantle critical research, training, and support systems. Although the proposal serves as a clear signal of the administration's priorities toward state-led oversight and military spending, it remains a "wish list" that would require significant congressional approval to be enacted.
As the common phrase goes, “you can only handle what you are given.” There are several different religious variations of the phrase, but all of them mean the same thing—people can handle whatever life throws at them. Obviously, there many different religious references to this. Regardless of the variety of beliefs, the point of the phrase is that people are given the situations that they are strong enough to handle. That’s the general consensus at least. Every single person on this earth has had some sort of trial or tribulation in their life. It’s human nature to have to go through a challenging situation—things happen to all of us.
Over the past year and a half or so, it seems like the disability community has taken one punch after another. Drastic changes and cuts to Medicaid, dismantling of the Department of Education, questioning of our abilities and lives, wrong information being spread by lawmakers about causes of certain conditions, pauses and cuts to FoodShare, the list goes on and on… It truly has been unbelievably heartbreaking.
Very admittedly, I haven’t kept up on everything like I should. Partly due to time and energy, but also because I know that the majority of the changes won’t affect me because I’m “too disabled.” Before everyone reading this freaks out, let me explain why I said that. I’m fully aware that changes to home-and-community-based services could drastically change my living situation. Yes, I know that talk of institutionalization has surfaced which is beyond devastating. Unfortunately, I’m also aware that my care needs are considered to be pretty high which would likely make me an easy candidate for a group home or institution. I want to be clear that I’m totally against institutions, but the reality is that regardless of what happens, in a few years, I’ll likely end up in a group home or a care facility. While this is an incredibly hard pill to swallow, it isn’t a new concept to me. I’ve known for many years that due to my high level of needs combined with the fact that the long-term care system isn’t adequate as it is (to put it nicely), I’ve known that the years of living independently in my own apartment are numbered, and, while it’s disheartening, a group home is very likely in the future. So, while yes, institutionalization is a real fear, the bottom line is that I need hands-on care from others to survive. The source and quality of that care is what’s up in the air, but, unless things take an even more drastic turn, I’m pretty confident that I’m going to be physically taken care of for the foreseeable future. The conditions and the environment likely won’t be what I desire, though.
A lot of the changes being made and talked about, such as work requirements, likely won’t affect me because I’d likely be one of the people who would qualify for an exemption due to the level of my disability. Again, I want to be clear –I’m not proud of this, but it is my reality. Personally, I plan to continue to work on some level until I’m no longer able to. The factor of that will determine that is unknown, but, for me, knowing I’m contributing in a small way means everything.
Recently, yet another idea from President Trump has surfaced, and this one would no doubt directly affect me. He signed an executive order seeking to stop mail-in voting and compile a national voter list. Thankfully, this likely won’t ever come to fruition because states and territories regulate voting and it’s likely unconstitutional, but, if it ever did, simply put, I would not be able to vote. Due to care and transportation issues, I always vote absentee. Scheduling rides to and from the polls would be nearly impossible due to timing. Furthermore, I need physical assistance filling out the ballot. In this day in age where decent caregivers are so few and far between, the last thing I need would be to have a person quit because we don’t have the same political beliefs. As it stands now, when I receive the ballot in the mail, I usually wait until my parents come up and have them help me. Very occasionally, if I have a worker who is more of a friend here, I’ll have her help me. I know this is risky because the mail system has become unreliable, but I always mail my ballot. Logistically, it just doesn’t work to drop it off or have someone else take it in. I’ve never written about it because it’s been stuck in the courts for well over a year, but I’m involved in a lawsuit trying to get electronic ballots available for people with disabilities in Wisconsin. It’d be so nice to be able to fill out a ballot independently using the computer and assistive technology I have. Unfortunately, the state legislature is fighting us tooth and nail against it, so I don’t see the possibility of it happening anytime in the near future. Circling back around to President Trump’s latest antics of trying to eliminate mail-in voting, if that somehow ever end up coming to be, it would prevent millions of citizens—with and without disabilities—from voting. While it’s unlikely it’ll happen, it feels like another claw towards the disability community because it would disproportionately affect us more than the general population.
As a whole, the disability community has handled a lot over the years. I’m a little too young to know what it was like before all the accessibility and inclusion laws were in place, but I’ve read books and watched documentaries to learn about how it was and how hard disability advocates worked to get where we are today. I certainly hope we’re not going back that far, but, if we do, I know that the disability community is made up of really resilient people who won’t stop fighting and making noise until things are right. The truth is that we have no choice but to handle whatever is thrown at us. Like everyone else, we choose what is important to us and advocate for those issues. The disability community will never give up fighting for what’s right!
***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
In a statement released on April 2, 2026, Representative Shelia Stubbs (D-Madison) celebrated Autism Acceptance Day at the Wisconsin State Capitol, emphasizing the need for dignity, agency, and the removal of systemic barriers for autistic residents. Highlighting CDC data that shows Wisconsin has a higher prevalence of autism than the national average—1 in 26 children compared to the national 1 in 31—Stubbs called for increased funding for essential resources and respite programs. She praised the efforts of partner organizations like the Autism Society of Wisconsin, the Wisconsin Autism Providers Association, and Autism United of Wisconsin, reaffirming her commitment to advocating for the rights and full community inclusion of all autistic Wisconsinites.
brookings institute: Aging with dignity: Providing long-term supports and services at home for our nation’s elders
By SD Network, 2026-04-03
The provided article from Brookings highlights the urgent need for a structured long-term care system as the U.S. population ages, noting that seven in 10 individuals will eventually require significant long-term services and supports (LTSS). Currently, middle-income households face a "collapsed" private insurance market and high costs that exceed average savings, while Medicaid remains restricted to the very poor and often prioritizes nursing homes over preferred in-home care. To address this, authors Richard G. Frank, Sherry Glied, and their colleagues propose a new Medicare home care benefit designed as an entitlement to provide financial protection and allow elders to age with dignity in their own homes.
PHi: A New Federal Proposal Would Further Undercut Home Care Workers’ Labor Rights
By SD Network, 2026-04-03
The U.S. Department of Labor has proposed a rule that simplifies the process for employers to classify home care workers as independent contractors, a move critics argue will lead to widespread misclassification. This change would strip workers of essential labor protections—such as minimum wage, overtime pay, and workers' compensation—costing individual aides an estimated $7,229 to $10,247 annually in lost compensation. By shifting the burden of payroll taxes and insurance to the workers, the proposal risks destabilizing a fragile care system already struggling with high turnover and recruitment challenges. PHI and other advocates are urging the public to submit comments by April 28, 2026, to oppose the rule and protect the rights of this predominantly female and diverse workforce.
ASSOCIATION OF PROGRAMS FOR RAUL INDEPENDENT LIVING: Help Shape Research: Adults with Cerebral Palsy
By SD Network, 2026-04-03
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AAPD: American Association of People with Disabilities Responds to Executive Order Threatening Vote by Mail
By SD Network, 2026-04-03
The American Association of People with Disabilities (AAPD) has issued a statement strongly condemning President Trump’s Executive Order titled “Ensuring Citizenship Verification and Integrity in Federal Elections,” arguing it creates significant barriers for the more than 40 million eligible voters with disabilities. The AAPD contends that by establishing a “citizenship list” based on potentially inaccurate federal data and imposing a 60-day deadline for eligibility sharing, the order threatens to disenfranchise disabled individuals who rely on the flexibility of voting by mail due to health flares, transportation issues, or living in long-term care facilities. Ultimately, the organization asserts that the President lacks the constitutional authority to unilaterally alter election laws and vows to continue its REV UP Campaign to protect accessible democracy.
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