News
HUMAN RIGHTS RESEARCH: The Price of Caring: When Unpaid Caregiving Becomes a Human Rights Issue
By SD Network, 2026-06-13
Unpaid family caregiving in the United States, predominantly performed by women, has evolved from a private family obligation into a systemic human rights crisis characterized by severe economic and social penalties. Caregivers provide billions of hours of uncompensated labor that forms the foundation of the long-term care system, yet a lack of national paid family leave, workplace discrimination protections, and retirement credits leaves many facing acute financial hardship, accumulating debt, and poverty. This structural gender inequality and economic deprivation violate international human rights standards, such as the right to work and the right to an adequate standard of living. Addressing this crisis requires a definitive political shift from treating caregiving as a private sacrifice to supporting it as a public good through federal legal protections, Social Security caregiving credits, mandated paid leave, and expanded community-based infrastructure.
The Able Americans policy report outlines six critical reforms to combat fraud, waste, and abuse within Medicaid’s Home- and Community-Based Services (HCBS) program, which supports 8.4 million Americans with disabilities at a fraction of the cost of institutional care. To safeguard this flexible funding without penalizing vulnerable families, the authors recommend creating public transparency dashboards, increasing CMS oversight on state spending, and establishing data-driven fraud detection. Additionally, the proposal advocates for empowering recipients to direct and verify their own care, measuring outcomes based on service delivery, and ensuring strict integrity and ownership disclosures from third-party providers.
FIERCE HEALTHCARE: Why self-directed care is becoming central to long-term care
By SD Network, 2026-06-13
Self-directed care is transforming long-term care by shifting control from traditional agencies to the individuals receiving care, allowing them to choose who provides their assistance and how it is delivered. By enabling people to hire trusted individuals like family members, friends, or neighbors, this model effectively expands the healthcare workforce and boosts caregiver retention amid widespread labor shortages. The approach pairs flexibility with modern accountability measures—such as electronic timekeeping and clear program oversight—to ensure transparency and prevent misuse. Ultimately, driven by an aging population and a strong consumer preference for aging in place, this framework is evolving from a niche alternative into a central pillar of sustainable, dignified home-based care.
WISCONSIN PUBLIC RADIO: People living with disabilities may soon find it easier to access the Apostle Islands
By SD Network, 2026-06-11
A major accessibility upgrade called the "Access for All" initiative is set to begin construction later this month at Meyers Beach within the Apostle Islands National Lakeshore. Currently, a steep 45-step staircase acts as a significant barrier for individuals with mobility challenges who wish to access the beach and kayak to the area's famous sea caves. To remedy this, a nonprofit organization has partnered with a matching grant program to fund a new 500-foot gradually sloped ramp alongside a new staircase. This project, expected to wrap up by October, aims to provide dignity and open doors for visitors living with disabilities, allowing everyone to experience the natural beauty of the lakeshore firsthand.
DISABILITY SCOOP: Astronaut Slated To Become First With Physical Disability To Live In Orbit
By SD Network, 2026-06-11
The U.K. Space Agency has partnered with the American commercial space company Vast to fund a potential historic mission for British surgeon and former Paralympic sprinter John McFall, who is on track to become the first person with a physical disability to live in orbit. McFall, an amputee who was previously selected for the European Space Agency’s astronaut reserve and cleared for long-duration spaceflight, would travel to Vast's planned commercial space station, Haven-1, which is slated for launch in 2027. While firm mission plans are still being finalized, his time in orbit would focus on critical research regarding how prosthetics perform in microgravity and how the human musculoskeletal system adapts to space, potentially offering groundbreaking insights for rehabilitation and prosthetic design back on Earth.
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.