News


Starting this month, families can open Trump Accounts for babies born between 2025 and 2028, which include a $1,000 federal contribution. However, once these children reach adulthood, the money saved in these accounts will count against the Supplemental Security Income (SSI) program's strict $2,000 asset limit. Because SSI asset limits have been frozen for nearly 40 years without adjusting for inflation, the growth of these accounts threatens to disqualify low-income disabled young adults from essential SSI benefits and Medicaid coverage unless they transfer the funds into ABLE accounts by age 17 or Congress raises the limits.



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This NBC News report examines how a Trump administration policy memo, which makes it easier for states to institutionalize homeless individuals with mental health issues, has coincided with the Justice Department backing away from civil rights cases protecting disabled Americans. Advocates and disabled individuals are raising alarms that these combined actions threaten long-standing community-living protections under the Olmstead decision, potentially triggering a nationwide rollback of disability rights and an increase in forced institutionalization.

 


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The article from The Arc details the struggles of Chad, an individual with a disability who faced ongoing Supplemental Security Income overpayments from the Social Security Administration despite promptly reporting income from a part-time internship. Despite his persistent efforts to fix the error, the continued extra payments and stringent asset limits created immense financial stress and vulnerability. Chad's experience highlights systemic flaws within the system—such as administrative burdens, outdated technology, and long wait times—that ultimately penalize individuals with disabilities for attempting to work and achieve financial independence.



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Federal officials are planning to significantly scale back the National Health Interview Survey—cutting the questionnaire down from nearly 490 questions to roughly 200 to 225 items—due to tightening budgets, staff reductions, and declining response rates. Disability advocates and researchers are deeply concerned that removing crucial questions about mobility, vision, hearing, and daily functioning will lead to many disabled Americans being miscategorized and undercounted, potentially leaving the government unable to accurately track their health needs or measure the impacts of health insurance changes.



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The Social Security Disability Insurance (SSDI) application process and subsequent mandatory 24-month Medicare waiting period can leave many people with long-term disabilities at risk of going without health coverage, with over 1 in 4 relying on Medicaid expansion in the interim. However, upcoming federal work requirements for Medicaid expansion enrollees threaten this safety net starting in January 2027. Because SSDI applicants and individuals waiting for Medicare are generally unable to work due to their disabilities, they will likely need to rely on medical frailty exemptions to maintain coverage. Although federal guidance provides frameworks for states to verify medical frailty using claims data, strict documentation and verification rules could still create significant administrative hurdles, putting vulnerable individuals at risk of losing their health insurance..

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The upcoming gubernatorial debates in Wisconsin are criticized for completely overlooking critical issues impacting older adults, family caregivers, and individuals with disabilities—a demographic representing over half of the state's population. Despite a rapidly aging population and significant systemic gaps in health, housing, transportation, long-term care, and education, candidates are not scheduled to address these pressing concerns. Advocates emphasize that aging and disability issues affect everyone and require urgent attention from state leadership as future policy decisions will dictate the quality of care and community support available for generations.



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Smart glasses are providing life-changing independence and workplace assistance for blind and deaf individuals by offering hands-free navigation, real-time captioning, and descriptive AI tools. However, the technology is currently facing intense public scrutiny and calls for import bans, restrictions, and privacy reviews due to concerns over covert filming and data security vulnerabilities. Disability advocates are concerned that negative media rhetoric and sweeping bans might stigmatize the devices and limit access for those who rely on them as essential daily disability aids.



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The National Council on Disability (NCD), an independent federal agency, released its annual report to the President and Congress on the past year in disability policy. The report notes historic employment gains. It also flags concerns about Medicaid changes, delayed accessibility rules including web accessibility, the Department of Justice’s (DOJ) new interpretation of Olmstead v. L.C., and reintroduced bills that could weaken the Americans with Disabilities Act (ADA). It closes with recommendations to protect the ADA’s goals of independent living and full participation.

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A recent study published in the Journal of the American Geriatrics Society reveals that about 32.3% of low-income older adults who started using Medicaid home- and community-based services were still utilizing them five years later. Tracking 1,304 enrollees, the research found that among those who eventually stopped services, 25.2% ended with a community discharge, 16.2% transitioned to a nursing home, and 26.2% ended with death. Additionally, factors like prior nursing home use, a diagnosis of Alzheimer's disease or related dementias, and the timing of establishing Medicaid coverage significantly influenced long-term care outcomes and nursing home placement risks.



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Self-Determination Network News:

October 2026

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

Disability and Policy Forum

The Survival Coalition and the Wisconsin Aging Advocacy Network (WAAN) are co-hosting a nonpartisan Disability and Aging Policy Forum, TOMORROW, Tuesday, October 13th, at 11 a.m. Because the upcoming governor’s debate will exclude questions on caregiving, aging, and disability issues—affecting half of Wisconsin’s population—this vital event will feature an expert panel of older adults, advocates, and professionals filling the gap. The virtual forum will address the urgent erosion of civil rights, the state's fragile care infrastructure, the critical shortage of accessible housing, and how schools can better support students of all abilities. Both major gubernatorial candidates declined invitations to participate, making the voices of this panel more crucial than ever. Watch the event live on Facebook or YouTube.


Action Alert: Potential Changes to the Census Could Impact Disability Services --Submit Public Comment

Since 1957, the Centers for Disease Control and Prevention (CDC) has conducted an annual health survey to track the number of people living with disabilities. The data collected from this survey is essential for tracking disability trends, measuring quality of life, directing federal funding to state programs (such as Developmental Disabilities Councils), and helping policymakers design effective public health policies and support services.


However, the CDC is now proposing to remove several disability-related questions from the survey, including specific questions used to count individuals with intellectual and developmental disabilities (I/DD).

Advocacy groups warn that these changes will lead to a significant undercount of the I/DD community. Because many federal grants and funding formulas rely directly on this data to distribute money to states, undercounting could reduce vital federal funding for schools, state agencies, local communities, and support programs.


The CDC is accepting public comments on this proposal until October 20th. If approved, the changes will take effect in 2028 and will impact federal disability data collection for the next decade.


Special Education Survey

Help shape the future of special education in Wisconsin! The Survival Coalition is helping to gather input from parents of students with disabilities to show lawmakers, school leaders, and the press how current funding, staffing, and service quality affect local families.

We are aiming for 500+ responses from across the state. The survey is anonymous and takes less than 10 minutes to complete. It closes at noon on Wednesday October 23rd. Please take the survey and/or share it with other families who are impacted by special education.

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Stop by and Learn How to Be Entered into a Drawing for a Tablet!

We look forward to seeing many of you at the Self-Determination Conference next week. Please stop by the InControl Wisconsin exhibit table, grab some InControl Wisconsin swag, share your favorite piece of technology, and participate in a discussion for a chance to win a tablet. 

Not attending the conference? You can still have a chance to win. Just comment on this discussion by November 2nd. We will be drawing one name from the people who commented..


Federal Updates


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 sign up to receive the slide deck and links for the week of October 23rd and tune into the next live webinar Friday October 30th to get the latest):

  • Policy changes the administration is making:

    • Federal government continues to back away from enforcement of disability rights;

    •  CDC removes disability questions from survey used to calculate funding to states;

    •  Census/SNAP data missing;

    • Federal agencies find new ways to not send money back to states;

    • ACA and Medicare rebates, who is getting them and where is the money coming from?;

    • Rule threatens nonprofits required to help voters with disabilities register;

    • Heath experts say states already have more fraud protections in place for home care than required by Feds.

  • Continued coverage of impacts of HR 1.

    • Which states will face the biggest hits from HR 1?;
    • Refugees with disabilities lose Medicaid access; Federal immigration policy means fewer home care workers;
    • Missouri won’t use short-term hardship exemptions to help people keep Medicaid coverage;
    • Washington state proposes big cuts to I/DD services;
    • Georgia cuts ABA therapy rate for foster kids by 30%;
    • Indiana restarts eligibility determinations with tool that cost coverage for people with I/DD;
    • SNAP changes resulting in steep declines in enrollment.

We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.

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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.
This month, we're shining the Spotlight on Priscilla. She is a spirited and independent self-advocate, award-winning leader, and microbusiness owner who brings unstoppable energy to mentoring, presenting, and enjoying car shows, but takes the most pride in being an amazing grandmother. Stop by this month's Member Spotlight to get to know Priscilla.
Who should we shine the spotlight on next?

128 Stacy’s Journal








"Having to constantly prove that you need supports is not only time-consuming, but it can be mentally and emotionally exhausting."

In this month's journal entry, Stacy talks about how many people who have disabilities find themselves constantly having to prove their need for services and supports they need. She discusses how it can not only be time-consuming, but it can also be emotionally draining at times. Do you have similar feelings?




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

  • Call for Presenters: The 2027 Circles of Life Conference is looking for presentation proposals on topics like community building, IEPs, and self-care for its May event in the Wisconsin Dells, which connects families of children with disabilities with healthcare and education professionals. Learn more and consider submitting a proposal.

  • Transportation Report: This report explains how transportation remains a major hurdle for disabled individuals and older adults, and it proposes a new coordinated framework to ensure they can access reliable transportation regardless of where they live. Find out what it suggests.
  • Immigrant Workers Key: Immigrant workers make up about one-third of the U.S. homecare workforce, but recent policy changes ending Temporary Protected Status for Haitians threaten to worsen the severe caregiver shortage and disrupt patient care. Learn how this is damaging the already depleted caregiver workforce.
  • Defining Home-and-Community Based Services:  To help measure program success and hold them accountable, two organizations reviewed over 200 definitions to create a single, shared definition of home- and community-based services that focuses on choice and independence for older adults and people with disabilities. Find out what the definitions are.
  • New Movie: The upcoming movie Being Heumann marks a major milestone for disability representation in Hollywood by casting disabled actress Ruth Madeley to play activist Judith Heumann and having disabled writer Rebekah Taussig co-write the screenplay. Learn what this film is going to be about.
  • Watch: In this interview, a disability rights advocate shares their experience of losing their sight and explains how they created an educational cartoon series to use humor to fight daily accessibility barriers, build empathy, and show that disability is a normal part of life. Watch to find out more.
  • Letter to DOJ: A bipartisan group of 18 state governors sent a letter urging the U.S. Department of Justice to protect community-based services for people with disabilities and stop actions that could make it easier to force them into institution. Read about why this is so important.
  • Waitlist for Employment Services: A severe funding shortage between late 2025 and mid-2026 forced Wisconsin's Division of Vocational Rehabilitation to put over 7,600 disabled job seekers on a months-long waitlist, causing many to miss out on employment opportunities and highlighting the risks of underfunding state programs. Learn why this should have never happened.
  • Mental Health Training for Caregivers: A new, free online training course is available to help direct care workers learn how to better support adults with both intellectual and developmental disabilities and mental health needs. Find out more about this course.
  • Caregiver Report: Although the U.S. direct care workforce has grown to nearly 5.4 million jobs to meet the needs of an aging population, workers—who are mostly women, people of color, and immigrants—still face severe financial hardships and low wages that are now threatened by upcoming federal policy changes. Find out why advocates are concerned.
  • Caregiving Compendium: The Family Caregiving Compendium is an interactive online tool that tracks and compares unpassed federal policy proposals from the last ten years designed to support America's 63 million family caregivers across areas like financial aid, training, and paid leave. Check out this great resource.
  • New Resource: The Home Modification Information Network is a free, newly updated online tool that connects individuals, caregivers, and professionals with local, state, and national resources to help make homes safer and more accessible Learn how to explore it.
  • Disability Fellowship Program: Funded by Common Good Philanthropies, the Wisconsin Disability Policy Fellowship and Internship Program gives individuals with developmental disabilities and their families hands-on experience in advocacy, policy analysis, and community engagement to help them build careers in disability rights. Applications due October 28th.
  • National Self-Direction Inventory: As of 2026, over two million older adults, people with disabilities, and veterans are using self-directed care to choose their own caregivers, an expanding model that state agencies find is 20 to 30 percent cheaper than traditional agencies and helps fix caregiver shortages by letting participants hire family and friends. Learn what else you can find in the National Self-Direction Inventory.
  • Concerns over Availability of Services: A severe shortage of caregivers and upcoming Medicaid funding cuts are forcing disability service providers to turn away new clients and reduce programs, leaving vulnerable people at risk of losing essential care. Read about why advocates are deeply concerned.

128 Upcoming Events 








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

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. 

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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.

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