News
Self-Determination Network News:
June 2026
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Let's Talk: The Supplemental Security Income Asset Limit
The rules for Supplemental Security Income (SSI) are outdated and keep people with disabilities and older adults stuck in poverty. Right now, a person cannot have more than $2,000 in savings ($3,000 for couples) without losing their benefits. Because this limit has not changed since 1989, it makes it impossible for people to save for emergencies.
To fix this, advocates are pushing for new laws—like the SSI Savings Penalty Elimination Act—to raise these savings limits so people can financial plan without losing their basic income.
Do you think the asset limit needs to be raised? What do you think it should be? Do you have other ideas about how to fix this?
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 last week's webinar (we encourage you to tune into tomorrow's webinar to get the latest):
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Policy changes the administration is making:
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CMS releases “prove you’re working, exempt guidance; who will fit into the exemptions (and who won’t);
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White House proposes new rules giving political appointees final approval on all federal grants;
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White House Blocks $2 Billion for Education;
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8,000 federal policy officials lose civil service protections;
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RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines;
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Conservative think tank alleges widespread ObamaCare enrollment fraud.
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Continued coverage of impacts of HR 1.
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Early trends show how states are cutting home care programs ahead of HR 1 implementation;
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States struggle with cost to implement Medicaid prove you’re working/exempt requirements;
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Bills in New Jersey would help volunteers prove hours to meet prove you’re working requirements;
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Ohio latest state to propose legislation aimed at cutting home care.
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- Congress
- 2nd reconciliation bill moving, 3rd reconciliation bill taking form, House reveals federal 2027 Labor/DHHS/Education budget
We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.
Diehard Award Nominations
Do you know someone who goes above and beyond to improve community supports for individuals with disabilities? Do they support self-determination? Nominate them for a Diehard Award in one of the following two categories:
PROFESSIONAL ADVOCATE and SELF-ADVOCATE/GRASSROOTS ADVOCATE
A Diehard is a person who has made a significant contribution to the advocacy work here in Wisconsin. A diehard is someone with a strong commitment to community integration and self-determination. Diehards go above and beyond to make sure everyone is counted.
Awards will be presented at the Self-Determination Conference on Tuesday, October 20 at 5:30 p.m. (during dinner) at the Kalahari Resort and Conference Center Wisconsin Dells.
Nomination Forms must be submitted by August 14, 2026.
Call for Exhibitors
This year's Self-Determination Conference will be held October 19th-21st at the Kalahari Resort in Wisconsin Dells. Exhibit tables will be available on Tuesday October 20th and Wednesday October 21st. Space is limited and only applications from exhibitors that directly support self-determination and self-direction in Wisconsin 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.
Take five minutes to check out what's happening on the Self-Determination Network:
- Shift Toward Self-Direction: The shift toward self-directed care is transforming the U.S. healthcare landscape by moving away from agency-managed services to a model where individuals take a central role in managing their own care, including selecting caregivers and setting schedules. Learn what is causing this shift.
- Debate over Long-Term Care Benefit: The debate over what to do about Medicaid's Long-Term Care benefit continues. Read about the two sides of this debate.
- Doctor Warns Cuts Will Hurt Wisconsinites: A Milwaukee-based emergency room physician, warns that Medicaid cuts in the Trump administration's budget law will have devastating consequences for Wisconsin residents. Find out how these cuts will affect people.
- Input Needed on Children's Waiver: The Department of Health Services is seeking public comments on the Children's Long-Term Care Supports waiver renewal. Comments due June 13th.
- Caregivers Need Support: According to a new report, 36% of family caregivers have disabilities themselves. Learn what kinds of supports are needed.
- Caregiver Hotline: Federal lawmakers have introduced the Caregiver Access to Resources and Emotional Support (CARES) Hotline Act, which would establish a first-ever 24/7 national hotline for caregivers of people with intellectual and developmental disabilities. Find out what the line would offer.
- New Tracker: A new tracker has been developed to monitor state-level cuts to Home and Community-Based Services programs. Take a look at it.
- Employment Research Study: Researchers at the University of Washington who focus on disability rights and the Americans with Disabilities Act (ADA) are looking for participants in an online research study. Find out more and participate.
- New Transportation Vendor: The Wisconsin Department of Health Services has issued its intent to award a contract to a new vendor to manage non-emergency medical transportation services for Medicaid and BadgerPlus members. Learn which vendor got the contract.
- Accessibility List: According to Forbes' accessibility list, companies are making accessibility a top priority. Take a look at the Accessibility 200 List.
- Closing the Mental Health Gap: Special Olympics is actively working to address the significant mental health care gap experienced by individuals with intellectual and developmental disabilities. Learn what they're doing.
- Project SEARCH Success: Project SEARCH is a nine-month hands-on job training program for high school students with disabilities. Read about one student's story.
- Disability Policy Fellowship: The Wisconsin Disability Policy Leadership Program, an innovative program to empower people with developmental disabilities and their family members to engage in policy advocacy and leadership launched the Internship Application. Applications due June 24th.
- Work Requirement Guidelines: The Trump administration released official guidance outlining exemptions for its new Medicaid work requirements, which take effect on January 1. Learn about some of the details of the guidelines.
- Update on Electronic Accessible Ballot Lawsuit: A Dane County judge recently heard arguments in a lawsuit brought by Disability Rights Wisconsin and the League of Women Voters, which seeks to allow voters with print disabilities to receive and fill out absentee ballots electronically to ensure their right to a secret and independent ballot. Find out where the lawsuit stands.
- Self-Direction Guardrails: This reference guide from the Self-Direction Center pushes back on fraud-driven scrutiny of Medicaid self-direction, arguing the model was built with accountability from the start. Read through it.
- Medicaid Advocacy Toolkit: The National Alliance for Caregiving and Caregiver Nation Coalition released this toolkit to help advocates protect Medicaid home- and community-based services (HCBS) amid cuts and fraud-related scrutiny. Check it out.
- Weight of Caregiving: In this Age-Friendly Health podcast episode, host Katherine Ornstein interviews Alison Barkoff of George Washington University about the growing economic and social weight of family caregiving. Listen to this podcast episode.
- Changes to IRIS Causing Problems: Recent changes to the IRIS Program are causing problems for participants and support brokers. Find out what the changes are and why they're causing issues.
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 David. This self-advocate has played an integral role in many of the positive changes for people with disabilities in Wisconsin. Stop by this month's Member Spotlight to get to know David.
Who should we shine the spotlight on next?
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: The Bumpy Path Ahead: Accessibility Considerations for Exterior Surfaces: June 11th, 1p.m. To 2:30p.m., Virtual
- Webinar: Beyond Code Minimums: Designing Accessible Kitchens & Bathrooms: June 16th, 1p.m. To 2:30p.m., Virtual
- WisTech 2026 Training #3 Rising Need, Rapid Innovation: The State of Access Technology for Individuals who are Blind or Low Vision: June 30th, 10a.m to 11:30a.m., Virtual
- Webinar: Employment Strategies and Systems Support After Brain Injury: June 30th, 1p.m. to 2:30p.m., Virtual
- National ADA Symposium: July 19th, Desert Ridge Resort, Phoenix AZ
- WisTech 2026 Training #4 Adaptive Cooking: Accessing Meal Preparation through Assistive Technology: August 4th, 10a.m. to 11:30a.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.
This article highlights how recent changes to Wisconsin’s Medicaid-funded IRIS program—a self-directed support system for individuals with disabilities—are severely restricting the role of "support brokers." Under the new state Department of Health Services definitions, support brokers can no longer assist clients with essential, ongoing daily tasks like managing finances and reading mail; instead, their role is limited strictly to annual benefits renewal forms, capped at a maximum of six hours per year. Advocates and clients argue that these strict time and task limitations strip away the core philosophy of self-determination, leaving vulnerable individuals who lack family support struggling to manage their lives independently and setting them up to fail.
In this Age-Friendly Health podcast episode, host Katherine Ornstein interviews Alison Barkoff of George Washington University about the growing economic and social weight of family caregiving. They examine recent federal policy shifts affecting Medicaid and caregiver programs, alongside emerging state and private-sector interventions. The episode, the series' final 2026 installment, is supported by The John A. Hartford Foundation.
The National Alliance for Caregiving and Caregiver Nation Coalition released this toolkit to help advocates protect Medicaid home- and community-based services (HCBS) amid cuts and fraud-related scrutiny. It notes 8.4 million people use HCBS, 600,000-plus remain waitlisted, and HCBS costs far less than institutional care ($16,491 versus $48,143 per person). It spotlights self-directed care—letting beneficiaries hire and even pay family caregivers—and offers messaging, fact sheets, and letter templates.
THE SELF-DIRECTION CENTER: Self-Direction Has Guardrails. Here's What Everyone Should Know.
By SD Network, 2026-06-05
This reference guide from the Self-Direction Center pushes back on fraud-driven scrutiny of Medicaid self-direction, arguing the model was built with accountability from the start. It cites the randomized Cash & Counseling study showing fewer unmet needs and better health, notes more than 1.5 million people self-directed care as of 2023, and details safeguards like Financial Management Services (FMS) and Electronic Visit Verification (EVV). With fraud convictions among self-directed workers at just 0.02% in 2021, its message: refine safeguards, don't cut the program.
Meet David. This seasoned self-advocate has played an integral role in many of the positive changes for people with disabilities in Wisconsin. Due to the trauma he endured working in a sheltered workshop for eight years, he has made it his mission to end subminimum wage in the state. We’re so fortunate to have David as a member of the Network!
What's your story? Tell us a little bit about yourself.
David shares that he was employed at a sheltered workshop from 2003 to 2011 in Manawa, Wisconsin. He explains that he sometimes made just $48 a week for stapling, labeling, and packaging products. “If anyone realizes how bad I was treated at a sheltered workshop claiming to be Christian and agrees sheltered workshops should continue, [they] obviously never worked at one,” he tells us. “It’s discouraging to see people being treated like they are 5 years old at a sheltered workshop.”
When David was in his early 30s, he abruptly stopped subminimum wage work in 2011 when he was hired by McDonald’s. He shares that he’s now making $15 per hour. He’s quick to point out, though, that there are still 39 workshops in Wisconsin with over 2,000 disabled employees who are being paid less than minimum wage.
How are you involved with self-determination? What advocacy things are you involved in?
David became involved in self-determination in 2011 when his rights were trampled on by a sheltered workshop. He knew he deserved and he fought for better circumstances for himself. Since then, he has been instrumental in getting many things going. Supported Decision Making, ABLE accounts, and the Medicaid Purchase Plans (MAPP) are all things that he has been involved in making come to life in Wisconsin.
Currently, due to the trauma he has from working in the sheltered workshop, he is trying to get 14c (which is provision that allows some employers to pay subminimum wage) phased out permanently in Wisconsin.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
David believes Wisconsin is moving in the right direction with eliminating penalties for MAPP, creating an ABLE account program, and allowing assets for inheritance.
What tip or resource would you like to share with people who want to be more self-determined?
David encourages people to stay focused on what she/he wants to accomplish. If you keep working towards it, you will succeed!
What are some of your hobbies?
In his spare time, David enjoys taking long drives.
***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.
WISCONSIN PUBLIC RADIO: Is Wisconsin violating the rights of disabled voters? Court hears arguments
By SD Network, 2026-06-02
A Dane County judge recently heard arguments in a lawsuit brought by Disability Rights Wisconsin and the League of Women Voters, which seeks to allow voters with print disabilities to receive and fill out absentee ballots electronically to ensure their right to a secret and independent ballot. Plaintiffs argue that requiring paper ballots forces roughly 110,000 eligible disabled voters in the state to rely on others for assistance or face dangerous travel conditions to vote in person. Conversely, attorneys for the state contend that existing accommodations—such as voting in person on electronic machines or using an assistant at home—are sufficient, and argue that implementing an internet-based system would create undue financial, administrative, and cyber-security burdens on Wisconsin's paper-based election system.
NBC NEWS: Trump admin outlines who would be exempt from Medicaid work requirements
By SD Network, 2026-06-02
The Trump administration released official guidance outlining exemptions for its new Medicaid work requirements, which take effect on January 1. Under the new rules, eligible adults must participate in work, school, or volunteer activities for at least 80 hours a month to maintain coverage, though exemptions are carved out for pregnant women, parents of young children, disabled veterans, and individuals deemed "medically frail" (such as those with cancer or substance use disorders). To ease the transition, the Centers for Medicare & Medicaid Services (CMS) will allow enrollees to self-attest to these exemptions during the first year before transitioning to a strict verification system in 2028. However, policy experts warn that despite these temporary flexibilities, the policy's rapid implementation timeline and administrative hurdles are projected to cause roughly 5 million people to lose their health insurance coverage by 2034.