News

Self-Determination Network News:

October 2025

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

• Employment Trap: Disability experts argue that  the U.S. disability system traps people in poverty through contradictory programs and benefit cliffs that punish work. Read about why people are trapped.
• Social Security Changes Causing Problems: A new report reveals that the recent changes at the Social Security Administration are causing problems for poor people and people with disabilities.
• Key Facts about  Medicaid: This article highlights key facts about the role Medicaid has in providing essential services for people with developmental and intellectual disabilities. Find out how the potential spending cuts to Medicaid will affect this population.
• Advocates Push Back: Wisconsin disability advocates are pushing back after President Trump publicly claimed that Tylenol during pregnancy could be the cause of autism. Learn what people are saying.
• City Rankings: New data has revealed the best, and worst, U.S. cities for people with disabilities. Read about what metrics were used to determine the rankings.
• Service Animal Study: Participants are needed for a service or emotional support study. Find out more information!
• Proposal Calls for More Medicaid Funding for Institutions: New legislation would repeal Medicaid's Institutions for Mental Diseases exclusion, allowing federal funds for mental health facilities with more than 16 beds. Learn why disability groups argue that this could lead direct billions of dollars towards Institutionalization.
• Home Care Industry Faces Millions of Job Openings by 2034: A new report shows that home care workforce doubled in the last decade. Find out why there will be great need for more workers in the next decade.
• Recommendations to Better Support Family Caregivers: A new report includes recommendations to better support family caregivers through Medicare payment reforms. Find out what they are.
• Accessible Checkout: Target recently announced that  the launch of a first-of-its-kind accessible self-checkout. Learn about what accessibility features these checkouts will have.
• Policy Internship: The Wisconsin Board for People with Developmental Disabilities launched its Policy Internship. Applications due October 31st. Learn more and apply today!
• Disability Community Quickly Seeing Gains Diminish: With all of the changes happening federally, people with disabilities are feeling that the gains that have been made in the last 50 years are quickly being diminished. Read about some of the threat that the disability community is facing.
• Government Shutdown: The federal government shut down after lawmakers failed to approve spending by the start of the new fiscal year on October 1. Find out how this is affecting people with disabilities.
• Verification Requirements Could Cause Burdens: HR 1 requires states to verify Medicaid beneficiary addresses by January 1, 2027, and submit cross-state data to CMS by October 1, 2029, to prevent duplicate enrollment. Learn why advocates warn this could cause significant burdens to vulnerable populations.
• Bill Would Crack Down on Fake Service Animals: A new bill in Wisconsin would fine individuals for misrepresenting their pets as service animals in public. Read about what the legislation seeks to do.
• The Fight Continues for an Electronic Ballot Continues:  Wisconsin voters with disabilities continue to advocate for an electronic accessible ballot. Find out why it's getting hung up in the courts.

Upcoming Events 

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

• Self Determination Conference 2025: October 20th-22nd, Kalahari Resort, Wisconsin Dells WI
• Webinar Series: Making Flexible Work – ADA and Flexible Work Arrangements: October 21st, 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.'

Wisconsin voters with disabilities continue to advocate for an electronic accessible ballot.  Advocates say online access would give disabled voters the opportunity to vote privately and independently.  However, the Republican-controlled Wisconsin Legislature is concerned online voting presents security risks for election integrity.

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A cool vehicle. A beautiful house. The perfect family. A high paying profession. The top leadership position of an organization. Whatever the situation may be, there are many different ways worthiness is portrayed. While, sometimes it can be difficult to recognize, every single individual on this earth has worth. Society often tries to dictate our conceptions of worth. For example, in our society, it’s often assumed that all convicted criminals are terrible people who don’t have any worthiness. However, most genuine people agree that is false. Whether it’s an interview for a job or a tryout for a professional sports team, most people have had to “prove” that there are worthy of something at least once in their life. When people question the worthiness of others, multiple issues often arise.

“As someone who deals with high anxiety and depression as it is, and hearing politicians and lawmakers question your worthiness and existence doesn’t help.” I’m quoted something to that effect in a recent Milwaukee Journal Sentinel article I was interviewed for. Did I question my response when I saw that they used that quote? Absolutely. I wondered why I typed that in an email response when I knew that it could be shared with thousands of people. However, as I thought about it more, I realized that it is what people need to hear. That statement is completely true.

Although, we’ve made significant progress in the last 50 years, the disability community as a whole already has an underlying stigma of being less worthy than the average American. Society often doesn’t see the people who have disabilities as having potential to be contributing citizens. Obviously, the whole visible vs invisible disability issue often comes into play with this, but it shouldn’t matter. People with disabilities have done and continue to do amazing things. Many famous people have or had disabilities and made incredible contributions to society. People such as Thomas Edison, Stephen Hawkins, Helen Keller, Whoopi Goldberg, Tom Cruise, Alexander Graham Bell, and so many others either have or had some sort of a disability. Think about all the great contributions they have made.

Over the last ten months, many people with disabilities have felt like we’ve been under attack by the federal government. Whether it be the cuts to Medicaid, the dismantling of certain agencies or departments which provide vital services and supports, the rescinding of laws that require buildings to be accessible, cuts to special education funding, changes to food assistance programs, or talk of more institutions being opened… It’s seemingly been endless. It’s been one punch after another.

To add to it, when we have top politicians making very false statements about what people who have certain conditions are capable of doing, it makes the whole community feel violated.  We also have the Secretary of Health and the President of the country making unproven statements about what could cause certain conditions and what could cure the condition. I don’t have the specific condition, so I’m not going to pretend that I know what it’s like hearing these false statements from government leaders, but it definitely adds to the rhetoric that’s happening as of recent.

The most concerning thing to me, personally, is that talk of Institutionalization has started. Obviously, I know that my needs are pretty high which is concerning when talk of putting people with disabilities back in institutions comes up. Nobody should be institutions regardless of their circumstances.  Personally, after all the hard work my family and I have done to get me to where I am today, I can’t fathom being forced into an institution. I honestly think that it would put me into such a dim mindset that I don’t think I would want to live. As dramatic as it sounds, it’s true. I can’t imagine being forced into an institution. It’d mentally and emotionally kill me. Not only would putting people with disabilities back into institutions be harmful to the individuals, systems are not ready with staffing to take on the disability community that has been living on their own independently. Believe me, there is already a huge caregiver shortage, and shoving people who have significant needs in to institutions would just make it worse. As someone who has pretty high needs, if I was forced into an institution, not only would it be mentally devastating, I have fear that my needs wouldn’t be met.

People with disabilities are just as important as everyone else. We may need some additional assistance and supports, but everyone needs some help no matter who you are.  People often forget that the disability community is unique in that anyone, regardless of any kind of characteristical status, can unexpectedly enter at any time. Why is there this rhetoric going around that people with disabilities aren’t worthy of getting the assistance they need to be able to live a successful life?

For me, having self-confidence and self-worth go hand in hand. Having top officials slash the assistance programs you rely on is anxiety provoking to say the least. It makes one question their own worth. Am I not worthy enough to get the assistance I need to live my life? That’s not a logical question, but it has crossed my mind too often lately.

The bottom line is that people with and without disabilities are worthy of receiving the assistance they need to live the life that they desire. Unfortunately, it’s bound to be an uphill battle for people with disabilities for quite some time, but I know that our community is made up of some strong relentless advocates who won’t stop advocating 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

A new bill in Wisconsin would fine individuals for misrepresenting their pets as service animals in public. The legislation seeks to align Wisconsin's definition of a service animal with federal law, which primarily recognizes dogs and miniature horses. The bill would also tighten requirements for emotional support animals in housing, allowing landlords to require a prescription. Advocates say fake service animals harm the credibility and safety of legitimate, task-trained service animals.

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HR 1 requires states to verify Medicaid beneficiary addresses by January 1, 2027, and submit cross-state data to CMS by October 1, 2029, to prevent duplicate enrollment. Marcella Maguire and Alison Barkoff warn populations experiencing homelessness, housing instability, child welfare involvement, or reentry from incarceration face particular risks of losing coverage. 

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The federal government shut down after lawmakers failed to approve spending by the start of the new fiscal year on October 1. Social Security and Supplemental Security Income benefits will continue, and IDEA funding will be disbursed on schedule. However, the Education Department's Office for Civil Rights will halt investigations, and CMS is unlikely to approve state plan amendments and waivers.

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Natalie Eilbert profiles Wisconsin's disability community facing threats from Trump administration policies. Cindy Bentley, 67, executive director of People First Wisconsin, lived in institutions from age 8 to 26 and now receives support through Wisconsin's IRIS Program (Include, Respect, I Self-Direct). "I go to bed crying because I'm terrified about them reopening institutions," Bentley said. Stacy Ellingen, an Oshkosh resident with cerebral palsy who hires caregivers through IRIS, struggled to fill 20 October shifts as caregivers earn $12-16/hour. Trump's $880 billion Medicaid cuts threaten services for 63,000 Wisconsin childless adults under new work requirements.

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The Wisconsin Board for People with Developmental Disabilities launched its Policy Internship.  It is an innovative paid experience to empower people with developmental disabilities and their family members to engage in policy advocacy and leadership. Applications due October 31st.

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Target recently announced that  the launch of a first-of-its-kind accessible self-checkout experience, designed with and for guests with disabilities, including those who are blind or have low vision. Beginning this holiday season and early into next year, these new checkouts will be installed in stores across the country.

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Howard Gleckman reports on recommendations from the Coalition to Transform Advanced Care and National Alliance for Caregiving to better support America's family caregivers through Medicare payment reforms. Proposals include expanding billing codes for caregiver training, integrating caregiver assessments into care planning, and requiring Medicare Advantage plans to offer supplemental benefits like respite care for families caring for enrollees with serious illness or dementia. The Trump Administration has stalled federal caregiver initiatives by firing program staff.

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