News
DISABILITY SCOOP: National hotline for intellectual and developmental disabilities (IDD) caregivers proposed
By SD Network, 2026-05-15
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 (IDD). The toll-free line would offer emotional support, brief intervention, mental health referrals, peer-to-peer counseling, and access to a national caregiver resource database.
According to a report from the Lurie Institute for Disability Policy, approximately 36 percent of family caregivers in the United States have disabilities themselves, a reality that challenges the common narrative that disabled people are solely recipients of care. These caregivers often face "extra weight," such as managing their own chronic pain or communication disorders while navigating complex medical systems and the daily needs of their loved ones. Despite being more likely to take on caregiving roles than those without disabilities, this demographic remains largely invisible in national policy and strategy, leading to a significant lack of tailored support and accessible services for those balancing their own health needs with the responsibility of caring for others.
WISCONSIN DEPARTMENT OF HEALTH SERVICE: Children's Long-Term Support (CLTS) Waiver Renewals Posted for Public Comment
By SD Network, 2026-05-15
Children's Long-Term Support (CLTS) Waiver Renewals Posted for Public Comment
The Wisconsin Department of Health Services (DHS) is planning to submit requests to the Centers for Medicare & Medicaid Services to renew the CLTS § 1915(c) home and community-based services waiver and the § 1915(b)(4) waiver that allows counties to be the sole provider of support and service coordination.
DHS is seeking public comment on its waiver renewal applications. Provider input on the changes is important for ensuring that the final draft of the application is the best it can be.
How this may affect you as a provider of CLTS Waiver Program services
The proposed changes include adding new services, changing definitions for existing services, and updating provider qualifications.
The draft waiver renewal applications and more information on the proposed changes are available on the CLTS Waiver Renewal webpage.
DHS wants CLTS Waiver Program provider feedback
Public comments are due by June 13, 2026.
You may submit your comments by email at: DHSCLTSWaiverRenewal@dhs.wisconsin.gov
You can also mail comments to:
State of Wisconsin
Department of Health Services, Division of Medicaid Services
Bureau of Children’s Services
Attn: CLTS Waiver Renewal
201 E. Washington Ave.
Madison, WI 53703
A paper copy of the waiver applications is available upon request.
THE WISCONSIN INDEPENDENT: GOP Medicaid cuts will hurt Wisconsinites, ER doctor says
By SD Network, 2026-05-14
Dr. Chris Ford, a Milwaukee-based emergency room physician, warns that Republican-led Medicaid cuts in the Trump administration's budget law will have devastating consequences for Wisconsin residents, potentially costing lives as hospitals face service eliminations and closures. The cuts, projected to reduce Medicaid spending by $1 trillion nationally over ten years, are expected to leave 54,000 more Wisconsinites uninsured by 2034, largely due to new work requirements that advocates argue create insurmountable paperwork barriers. While Republican representatives like Derrick Van Orden defend the measures as necessary to eliminate "waste and fraud," healthcare providers and social welfare experts emphasize that losing these funds will strain the emergency "safety net," increase the risk of institutionalization for people with disabilities, and lead to higher insurance premiums across the board.
The provided Forbes article outlines the growing political debate over reforming Medicaid's Long-Term Services and Supports (LTSS) benefit, highlighting four primary policy paths: Republican-led efforts to cut spending and tighten eligibility to combat perceived fraud; Democratic proposals to expand Medicaid by making home-based care a mandatory federal benefit; a shift toward moving home care into Medicare to increase public support and portability; and the creation of universal public insurance programs, similar to Washington State's model or the proposed WISH Act. While there is a consensus that the current system is failing frail older adults and those with disabilities, significant ideological divides remain regarding whether to enhance the safety net, transition to a social insurance model, or leave families to manage care costs independently.
MODERNHEALTHCARE.COM: The future of care is personal: Why self-direction is moving to the center of U.S. healthcare
By SD Network, 2026-05-14
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. This transition is driven by a growing demand for personalized, home-based services and a critical shortage of professional healthcare workers. By formalizing and compensating family members and friends as caregivers, self-direction expands the workforce while utilizing modern technologies like electronic visit verification to maintain oversight and program integrity. Ultimately, the model is evolving from a niche alternative into an essential component of long-term care that aligns system efficiency with the personal and cultural preferences of patients.
Self-Determination Network News:
May 2026
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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 (a lot has happened since the webinar...we encourage you to tune into tomorrow's webinar to get the latest):
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State:
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Deal that would reduce long-term revenue for short term spending increases possible
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Congress:
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Federal budget,
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What’s in the 2026 Reconciliation bill,
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what health care cuts and changes are being floated for a 2027 reconciliation bill,
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HSAs as a health care policy,
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impacts on ACA coverage and health care providers because of ACA subsidy expiration.
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Policy changes the administration is making:
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CMS withholds another $91M in Medicaid funding from Minnesota,
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Minnesota Medicaid funding freeze puts pressure on people who rely on services,
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Three policies that are reviving old ideas
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Continued coverage of impacts of HR 1.
- Nebraska implements prove you’re working/exempt requirements,
- States where voters forced Medicaid expansion are hoping strict work requirements will reduce how many people are in Medicaid,
- Low income workers face new challenges that could impact coverage,
- Study shows the “truly needy” won’t be spared from Medicaid cuts,
- States looking to reduce Medicaid spending may change what drugs are covered,
- Why 4.3M people have already lost food stamps.
We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.
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.
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 Brett. Stop by this month's Member Spotlight to get to know Brett.
Who should we shine the spotlight on next?
Check out the Latest Videos!
The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the newest videos on the channel:
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Take five minutes to check out what's happening on the Self-Determination Network:
- Watch: The National Council on Independent Living has launched a video oral history series preserving firsthand accounts from leaders of the Independent Living movement. Watch this awesome series.
- Medicaid Coverage: A new report from the Urban Institute warns that between 4.9 and 10.1 million Americans could lose Medicaid coverage by 2028 due to the One Big Beautiful Bill Act, a budget law signed by President Trump in July 2025. Learn how many people in Wisconsin are at risk of losing benefits.
- Proposed Requirement to Report Wages: In its March 2026 annual report to Congress, the Medicaid and CHIP Payment and Access Commission recommended that the Centers for Medicare & Medicaid Services require states to report hourly wages for home- and community-based services workers. Find out why this requirement would be helpful.
- Others Must Step Up: Some people are saying that a coalition of private-sector organizations, states, and clinical societies needs to be formed to step into the leadership void that is the result of the dismantling essential essential infrastructure and funding for Americans with disabilities. Read about this non-federal response should focus on.
- Care as a Public Good: A brief argues that the United States must shift from viewing care as a private, individual burden to a shared public infrastructure to foster a more equitable economy. Read to find out more about why the shift is necessary.
- Outcomes of Family Caregivers: A new study found that people whose primary caregiver is a paid family member or friend report significantly better outcomes than those supported by agency-employed staff. Find out why.
- Rule Delayed: The U.S. Department of Justice has issued an interim final rule delaying the implementation of new ADA Title II web accessibility standards by at least one year. Learn why disability advocates are concerned.
- Take Survey: How do people with and without a disability think about the experience of a disability? A team of researchers and disability advocates would appreciate your input. Learn more about this.
- New Podcast about Self-Direction: Get Fired Up is a new podcast hosted by Cindy and Jamie from Community Horizons, a support broker agency in Wisconsin that helps people with disabilities hire and manage their own caregivers. Check it out.
- Backlash over Comments: Health and Human Services Secretary, Robert F. Kennedy Jr., is facing backlash from disability advocates after comments he made about Medicaid home care programs that pay people to take care of relatives. Find out why.
- Kids Forced to Become Caregivers: This article argues that due to federal cuts more children are being forced into caregiving roles. Read about how cuts will further worsen the caregiving crisis forcing children to be caregivers for family members.
- Five Accessible Cities: For travelers with mobility challenges, things such as robust public transportation options and walkable city centers are often key. Learn about five top-notch cities in the US that are accessible.
- Fears of Cuts to Social Security: A recent ProPublica investigation reveals that the Trump administration is pushing a rule change to the Supplemental Security Income (SSI) program that could reduce or eliminate benefits for approximately 400,000 people with disabilities. Read about what the change could mean.
- Home and Community-Based Services Improve Outcomes: This research brief from the Community Living Policy Center highlights that Medicaid Home and Community-Based Services (HCBS) significantly improve quality of life while proving more cost-effective than institutional care. Learn about some of the stats on the benefits of HCBS.
- Disability Advocate Speaks Out: A Wisconsin self-advocate is speaking out regarding the significant Medicaid cuts mandated by the One Big Beautiful Bill Act signed in 2025. Read about what the feared impacts.
- Disability Employment Ranking: According to recent data, Wisconsin ranks in the top 20 for disability-inclusive employment. Find out where we rank and what's it based on.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Walk Sign Is On to Cross: Requirements for Accessible Pedestrian Signals in PROWAG: May 14th, 1:30p.m. to 3p.m., Virtual
- Webinar: Addressing Cognitive Impairment and Dementia Among Older Adults Experiencing Housing Insecurity and Homelessness: May 14th, 2p.m. to 3p.m., Virtual
- Webinar: A Systematic Approach to PDF Accessibility: May 19th, 12p.m. to 1:30p.m., Virtual
- Webinar: Planning and Zoning for Inclusive Design: May 19th, 1p.m. to 2:30p.m., Virtual
- WisTech 2026 Training #1 Getting from Point A to B: Accessible Transportation: May 20th, 10a.m. to 11:30a.m., Virtual
- National Self-Direction Conference: May 27th-29th, Minneapolis, MN
- Employment First Conference: June 1st-2nd, Kalahari Resort, Wisconsin Dells, WI
- WisTech 2026 Training #2 Self-Advocacy in the Digital Age: June 9th, 10a.m to 11:30a.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
- 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.
Wisconsin currently ranks 18th in the United States for disability-inclusive employment, with 51.0% of its disabled population in the workforce, according to recent data analyzed by Everway. The study, which utilized figures from Disability Statistics, identifies South Dakota as the national leader with a 61.5% employment rate, while West Virginia sits at the bottom with 36.4%. Beyond the rankings, the report emphasizes that geography continues to dictate opportunity and suggests that businesses can bridge this gap by adopting neuroinclusive practices, such as rethinking traditional interview processes and championing employee resource groups, to tap into a significant and often overlooked talent pool.