News

This AARP Public Policy Institute 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. Driven by high labor costs and inflation, the median cost for home health and assisted living increased by nearly 50% over those five years, significantly outpacing the 22% growth in median household income for those aged 65 and older. By 2024, annual costs for typical home care or facility-based services often equaled or exceeded the entire median income of older households, frequently exhausting lifetime savings within months. The report also notes substantial geographic disparity, with care in the most expensive states costing more than double that of the least expensive states, leaving many middle-income families to rely on unpaid family caregivers or deplete assets to qualify for Medicaid.

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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. Known for leading the historic 26-day 504 sit-in in San Francisco, she later served in both the Clinton and Obama administrations and co-founded the World Institute on Disability. Beyond her policy achievements, Heumann is remembered for her commitment to "nothing about us, without us," her mentorship of future leaders, and her ability to weave her identity as a disabled Jewish woman into a "roadmap" for religious and societal inclusion. Even three years after her passing in 2023, her legacy continues to empower the disability community to challenge ableism and demand equitable treatment in all facets of life.

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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. Disability advocacy groups, such as The Arc, argue that these requirements create significant barriers for voters with disabilities who may struggle with transportation, document duplication, or navigating physical polling places. While the bill aims to tighten election security, critics point out that it could conflict with existing protections like the Americans with Disabilities Act and the Help America Vote Act, potentially disenfranchising a voting bloc that relies heavily on accessible mail-in options and flexible registration processes.

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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. Supported by hospital systems, the legislation addresses the "bottleneck" of patients who no longer require acute care but remain in hospital beds for weeks while awaiting court-appointed guardians. While proponents argue this will free up critical resources and reduce costs, disability advocacy groups have expressed concerns regarding the rights and protections of these vulnerable patients during the transfer to nursing homes.

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Dr. Amber McKenna, a UW Health resident, has developed a project to create adaptive crayons specifically designed for children and adults with developmental disabilities. After noticing that standard crayons were difficult for patients with varying muscle tone to use, she secured a grant to melt down old crayons into custom shapes and sizes—smaller ones for those with high muscle tone and larger ones for those with lower strength. Since the project's inception, McKenna and her team have produced thousands of these crayons, donating them to organizations like GiGi’s Playhouse and the Central Wisconsin Center to ensure that art remains accessible to everyone.

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Finding assisted living in Wisconsin is best started through Aging and Disability Resource Centers (ADRCs), which offer free, objective information on local providers, payment options, and care levels. While online searches often lead to private referral agencies that may receive commissions from specific facilities, ADRCs provide unbiased lists and can help families navigate Medicaid or home-care alternatives. Experts also recommend reviewing facility surveys from the Wisconsin Division of Quality Assurance and asking referral agencies direct questions about their financial relationships and the criteria they use to recommend certain providers.

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The Georgetown University Center for Children and Families reports that total Medicaid and CHIP enrollment declined by approximately 3.3 million people (4.0%) in 2025, marking the third consecutive year of losses following the pandemic-era "unwinding." This downward trend occurred despite a modest rise in unemployment and is expected to worsen as states prepare for H.R. 1, which introduces mandatory work reporting requirements and more frequent renewals starting as early as mid-2026. The report highlights a "chilling effect" among mixed-status families and significant child enrollment drops in states like Alaska and Indiana, prompting the launch of a new state-by-state tracker to monitor these early warning signs of a rising uninsured rate.

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The Trump Administration is reportedly using claims of "fraud, waste, and abuse" as a pretext to withhold billions in Medicaid funding from Democratic-led states, with a primary focus on Minnesota. According to the Center on Budget and Policy Priorities, the federal government has deployed unprecedented legal maneuvers—including a rarely used compliance action and the deferral of hundreds of millions of dollars—that specifically target home- and community-based services for seniors and people with disabilities. Critics argue these actions are politically motivated weaponizations of oversight intended to punish states that provide health coverage to immigrants and to destabilize programs that help low-income residents meet basic needs.

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Self-Determination Network News:

March 2026

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

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

• Benefits and Eligibility Guide: Currently, Medicaid covers things like home care, home-and-community-based services waivers, and community programs. Read about the fear that The One Big Beautiful Bill will affect these things.
• The Science of Belonging: It's estimated that 1 in 6 children in the US has a developmental disability. Learn about how supported decision-making leads to greater autonomy and satisfaction than other options.
• The Eugenics Project: The Project Eugenics report documents what it describes as a systemic and coordinated rollback of disability rights in the United State. Find out more about this project.
• Input Needed: The US Access Board is seeking public comment on its approach to developing technical standards for universal changing stations required to be provided by sponsors of medium and large hub airports seeking airport development project grants. Comments due April 20th.
• Mental Health Care Gaps: A new study reveals that adults with intellectual and developmental disabilities face a significant mental health crisis, being over nine times more likely to report anxiety or depression than those without disabilities. Read about some of the barriers people are facing and what is being done about it.
• Concerns over IRIS Contractor Change: Wisconsin's IRIS program is transitioning to a single contractor to manage payroll and background checks for caregivers, a move that has sparked significant concern among enrolled adults with disabilities. Find out why participants are concerned.
• Caregivers are Sounding Alarms: Across the country, caregivers are sounding the alarm about what Medicaid cuts mean for the people they love. Learn about what their fears are.
• Take a Listen: This episode of The Advocacy Life Podcast, hosted by disability advocate Kevin Núñez, uses a pizza analogy to break down how government and politics work in an accessible, conversational way — covering topics like majority rule, representative democracy, and the Constitution.  Listen to learn more.
• Figure Skating: Figure skaters with disabilities are pushing for figure skating to be added to Paralympics. Read about the reasons behind this.
• Report on Section 508: The third annual report has on Section 508 of the Rehabilitation Act. Learn about some of the strengthens and weaknesses it found as far as ensuring equal access for people with disabilities.

Upcoming Events 

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

• Future Planning Webinar Series:  Lived Experience with Decision-Making: Young Adult Panel: March 11th, 12p.m to 1p.m., Virtual
• Lunch & Learn: What’s on the Ballot: Getting Ready for the WI Supreme Court Election: March 17th, 12p.m. to 1p.m., Virtual
• Webinar: Addressing Food Insecurity for People Living Alone With Dementia: March 17th, 1p.m. to 2p., Virtual
• Disability Advocacy Day: March 19th, Monona Terrace and the State Capitol, Madison WI
• Webinar: Accessible Tech: Artificial Intelligence: Problems and Possibilities for People with Disabilities: March 19th, 1p.m. to 2:30p.m., Virtual 
• Webinar: Aging Network Innovation Conversation: March 24th, 1p.m. to 2p.m., Virtual 
• Future Planning Webinar Series: Financial Planning for People with disabilities and Family Members: March 25th, 12p.m to 1p.m., Virtual 
• Future Planning Webinar Series: Understanding Work and Benefits: April 1st, 12p.m to 1p.m., Virtual
•  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.