News


96

Self-Determination Network News:

August 2026

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



What’s New in IRIS?

 Earlier this year, changes in the IRIS program for 2026-2030 were approved by the federal government. Unfortunately, the final document which includes these changes is 300 pages. So, In Control Wisconsin has created a short paper which highlights the key changes that participants need to know about. The paper starts with a list of positive changes in IRIS which create new opportunities for IRIS participants to make improvements in their IRIS Plans. The paper also lists recommendations which were made to Department of Health Services which were not implemented. There will be a session at the Self-Determination Conference to walk through all these changes and answer questions about them. You can read the paper here.

Survival Coalition: 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, takes less than 10 minutes, and makes a direct impact—add your voice today!

Take survey

Anchors and Sails Program 

Anchors and Sails is a research study led by Dr. Sang Qin from the Department of Rehabilitation Psychology and Special Education at the University of Wisconsin–Madison. The project focuses on family caregiving dynamics by offering participants unique opportunities to explore everyday decision-making resources, connect with families on similar caregiving journeys, and take valuable time to focus on their personal wellbeing. Eligible individuals who participate in the study will earn a $150 incentive for completing the session. Interested sign-ups can scan the flyer's QR code or visit the official signup page.

2026logosdcfinal.png

Have you Registered Yet?

Have you registered for the Self-Determination Conference yet? It will be held October 19th-21st at the Kalahari Resort in the Wisconsin Dells. This year's theme is: The Power of Self-Determination; Technology, Community and YOU! Registration closes September 30th.

Find out more and register today!


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 tune into the next webinar on Friday August 28th to get the latest):

  • Wisconsin

  • Policy changes the administration is making:

    • R word,

    • Arkansas asks for more time after CMS rejection of Medicaid expansion waiver;

    • Indiana asks CMS for a waiver to make people on Medicaid pay cost sharing;

    • White House issues executive order on vaccines, repeats false claims linking autism to vaccination;

    • Education department consolidates funding for different programs to states; concerns about moving civil rights enforcement of IDEA.

  • Continued coverage of impacts of HR 1.

    • 8 states will not let residents self attest they are two sick to work next year;
    • health providers worry how patients will get what they need to prove illness or stay on Medicaid; 
    • California, Medicaid cuts will impact everyone who needs health care; Indiana children with disabilities lose coverage because of administrative errors

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

196

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

  • Store Offers Quiet Hours: Sephora is launching global "quiet hours" with dimmed screens and lower music to create a calmer shopping experience for neurodivergent and sensory-sensitive customers. Find out more about these hours .
  • Inclusion is an Essential Quality: Inclusive leadership requires proactively removing workplace barriers and creating a safe environment where disabled employees feel valued, respected, and supported from day one. Learn why it's an essential in workplaces.
  • Options for Universal Recreation: To celebrate Disability Pride Month and the Americans with Disabilities Act anniversary, the Wisconsin Department of Natural Resources is promoting accessible state park features—such as adaptive kayaks, all-terrain wheelchairs, and barrier-free cabins—along with inclusive events and an updated online calendar filter to help visitors find accessible activities year-round. Check it out.
  • Necessity of Immigrant Workers: A June 2026 report highlights that immigrant workers make up nearly a third of the U.S. long-term care workforce, leading industry advocates to warn that changes in federal immigration policies could quickly trigger severe staffing shortages. Read more about what the report reveals.
  • Applications Open for the Next Partners Class: Applications are now open for Wisconsin Partners in Policymaking, a free six-session training program funded by the Board for People with Developmental Disabilities that equips future leaders to advocate alongside lawmakers and communities for the full inclusion of people with developmental disabilities. Applications due October 23rd.
  • The Power of the Disability Consumer Market: Working-age adults with disabilities hold $675 billion in disposable income—representing a large, growing consumer market fueled by remote work and technology—though significant income and wealth gaps still remain. Find out more about how the disability consumer market adds to the economy.
  • Success Story: With financial support, transportation aid, and guidance from a state vocational rehabilitation agency, a student with a disability became a registered nurse working in a hospital and plans to eventually become a nurse practitioner. Read this success story.
  • Lawsuit against Medicaid Rule: A total of 25 states and Washington, D.C., are suing the federal government to block a rule that requires Medicaid recipients to complete 80 hours of work, school, or community service each month to keep their health insurance. Learn more about the lawsuit.
  • Cost of Wheelchair Accessible Vehicles: To make wheelchair-accessible vehicles more affordable for low-income families and caregivers restricted by savings limits, the author of this blog  proposes a five-year pilot program offering a $7,500 federal tax credit that can be applied directly as a discount at the dealership. Do you agree?
  • Disability Belongs in the Community:  Advocates warn that weaker federal enforcement of disability integration rules could make it harder for people with disabilities to get the support they need to live independently in their own communities rather than in institutions. Find out why disability advocates are so concerned.
  • Foot-Flying Pilot: Dozens of families gathered at an EAA event to hear an inspiring message from the world's first foot-flying pilot and celebrate a local proclamation supporting disability inclusion and accessibility. Read about the pilot.
  • 35 Years Later: Despite recent gains in employment for people with disabilities, a large job gap persists, leading the author to urge leaders to take concrete action toward accessibility, universal design, and equal career opportunities. Learn about how 35 years after the Americans with Disabilities Act (ADA) was signed, people are still fighting for access and inclusion.
  • Program Helps Farmers with Disabilities: AgrAbility provides customized guidance, financial advice, and modified farm equipment to help agricultural workers with disabilities or injuries safely continue farming and maintain their independence. Find out more about this program.
  • Demanding Overturn: Over 100 lawmakers are demanding that the Department of Justice overturn a recent legal opinion that allows states to place people with mental illnesses in institutions instead of providing community-based care. Read about why they're doing this.
  • Caregiver Crisis: Low pay, limited government funding, and stricter immigration policies are causing a critical shortage of care workers, leaving facilities understaffed and making it harder for elderly and disabled individuals to receive proper support. Learn more about why it's getting harder to find caregivers.
  • Advocates are Worried: Advocates from the Wisconsin Board for People with Developmental Disabilities warn that recent federal actions and Medicaid cuts threaten disability rights, which could force people into institutions and place financial and caregiving burdens on families and home care providers. Learn more about why advocates are concerned.
  • The Future of Home Care:  Self-directed home care offers an affordable, flexible alternative to institutional care by allowing individuals to hire family or friends, but its long-term success requires strong oversight and technology to prevent fraud and ensure accountability. Find out why oversight and technology are so important.
  • Advocates Fear Impacts of Legal Opinion: Advocates and families fear that a new federal legal opinion allowing states to limit funding for home-based care in favor of institutions could roll back disability rights and force individuals out of their communities. Read about what this opinion could mean.
  • Judge Ruling Favors Disability Advocates: A Wisconsin judge ruled that paper-only absentee voting discriminates against voters with disabilities, but he declined to order an immediate switch to electronic voting due to security and logistical concerns, making an electronic option unlikely for the upcoming November election. Find out why still consider this significant progress.
  • National Leader Award: Applications for the 2027 AAPD Paul G. Hearne Emerging Leader Award are open until September 23, 2026, at 5 PM ET. Two selected individuals or pairs with disabilities will each receive $25,000 to recognize their advocacy work and fund a project that expands opportunities for the disability community.
  • Crunch Time for Work Requirements: States are starting to enforce new Medicaid rules requiring enrollees to log at least 80 hours per month of work, school, or community service to keep their health coverage, raising concerns that millions could lose benefits due to strict rules and administrative burdens. Find out which states are doing it first.
  • Drive for Change: A resident from the Fox Valley completed an 11-day wheelchair journey across the state to the Capitol to advocate for disability rights and highlight key legislative challenges facing individuals with disabilities. Learn more about why he did this for the second time.

spotlight.jpg

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.
In August, we're shining the Spotlight on Nekita. Through youth empowerment and accessible Pride events, they delivers joyful, high-energy advocacy rooted in intersectionality. Stop by this month's Member Spotlight to get to know Nekita.
Who should we shine the spotlight on next?

128 Stacy’s Journal






"When you have a medical provider who you get along with, you don’t only have an easier time trusting the person with your needs, you also feel more comfortable and relaxed during a potentially high anxiety time."
In this month's journal entry, Stacy talks about how important it is to have a connection with your medical providers. She opens up about some challenges she has experienced with different medical providers and she talks about how she has dealt with them. Have you had similar experiences with medical providers? How have you dealt with them?








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. 

196

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.

Posted in: Network News | 0 comments

Carl Schulze, a disabled resident of Wisconsin's Fox Valley area, undertook an 11-day journey driving his wheelchair all the way to the state Capitol in Madison to advocate for disability rights. By embarking on this extensive trip across the state, Schulze sought to raise awareness and draw attention to the ongoing challenges and key legislative issues facing individuals living with disabilities.



Posted in: default | 0 comments

States have begun implementing new Medicaid work rules requiring enrollees to log at least 80 hours per month of employment, education, or community service to maintain coverage, sparking concerns over widespread loss of benefits. Nebraska has become the first state to enforce these reporting requirements ahead of the January 1 national deadline, with projections indicating up to 7 million people could lose coverage nationwide by 2028. Patient advocacy groups and physician organizations, including the American College of Physicians, have raised alarms that the medical exemption process is overly restrictive and imposes excessive administrative burdens on doctors. These operational hurdles coincide with legal challenges and federal funding freezes, adding further pressure to state Medicaid systems.



Posted in: default | 0 comments

Deadline: Wednesday, September 23, 2026, 5 PM ET

Every year, AAPD recognizes outstanding emerging leaders with disabilities who exemplify leadership, advocacy, and dedication to the broader disability community with the AAPD Paul G. Hearne Emerging Leader Award. The award is named to honor the legacy and leadership of our co-founder and AAPD’s first President, Paul G. Hearne, who had a bold idea to create AAPD. 

Two (2) recipients will receive an award of $25,000: $10,000 in recognition of their outstanding contributions to the disability community and $15,000 to further a new or existing project or initiative that increases the opportunities for people with disabilities. A recipient can be an individual or a pair (2-person group). The recipients of the 2027 AAPD Paul G. Hearne Emerging Leader Awards will be honored among national disability leaders at the virtual 2027 AAPD National Community Event in the Spring.
Learn More and Apply Here

We encourage applicants who self-identify as an emerging leader with a disability to apply, regardless of U.S. citizenship, incarceration status, or age. We especially encourage people who have experienced intersecting forms of discrimination and from historically excluded backgrounds, rural areas, and U.S. territories to apply. An applicant’s status as an emerging leader is not necessarily tied to age, education status, employment, or specific experience or involvement in the disability community. The full list of applicant requirements can be found here.
AAPD will host a Zoom webinar on Wednesday, August 24th, at 4 PM ET/1 PM PT for any interested applicants to review the information and answer any questions you have. ASL and CART will be provided. Register here for the webinar. If you have any additional access needs, please email programs@aapd.com.
AAPD has a guide for applicants that includes a sample application, financial and disbursement information, resources for creating your application budget, and more. We also encourage you to learn about our incredible 2026 awardees here, and to check out the written and video profiles of PGH award winners over the years, compiled to celebrate 25 years of the award.
Posted in: default | 0 comments

Dane County Circuit Judge Everett Mitchell ruled that Wisconsin’s paper-only absentee voting system discriminates against disabled voters by denying them the opportunity to cast ballots privately and independently, violating protections under the Americans with Disabilities Act. While acknowledging the hardship, the judge stopped short of ordering state election officials to implement electronic voting options, citing unresolved questions regarding the logistics and security risks of such a system. The case, brought by disability rights groups and several disabled voters, will proceed to a hearing to establish a trial date, meaning an electronic voting option will likely not be in place before the upcoming November election.

Read more

Posted in: default | 0 comments

The Wisconsin Partners in Policymaking program is a six-session advocacy training to prepare future leaders around the state who can work with lawmakers and communities to support the inclusion of people with developmental disabilities in all aspects of life.

 We are looking for motivated individuals who want to create inclusive communities and are:

  • Parents or primary caregivers of children under 21 with developmental disabilities
  • Adults with developmental disabilities
  • Adult siblings or family members of individuals with developmental disabilities

 Dates for the Class of 2026/2027 are:

  • November 13 & 14, 2026 (Madison*)
  • December 11 & 12, 2026 (Virtual only)
  • January 22 & 23, 2027 (Virtual only)
  • February 26 & 27, 2027 (Virtual only) 
  • April 9 & 10, 2027 (Madison*)
  • May 14 & 15, 2027 (Madison*)

Applications Due October 23rd 2026

*If attending in person is difficult, please contact Jenny Neugart, Project Manager at Jennifer.neugart@wisconsin.gov to discuss options.
Partners in Policymaking

Posted in: default | 0 comments

Stacy's Journal: Beyond the Annual Physical


By Stacy Ellingen, 2026-08-04

“Name and date of birth, please.” How many times are we asked that in our lifetime? Regardless of what it’s for, that line is a staple at the beginning of every single medical appointment one has. Generally speaking, most adults see their general physician once a year for a physical. As we get older, often our bodies start to age and we need to see some doctors who specialize in different areas. For multiple reasons, developing a trusted relationship with medical professionals can be key in one’s health care journey. When you have a medical provider who you get along with, you don’t only have an easier time trusting the person with your needs, you also feel more comfortable and relaxed during a potentially high anxiety time. Developing that relationship can take time.

Years ago, I wrote about how until I was 26, I was a really healthy person. Other than seeing a few specialists here and there to explore different things that would potentially help, I saw a regular physician once a year for a physical and that was it. Until my third or fourth year of college, I had the same pediatrician since birth. He was there the night I was born. Obviously, he gained trust with my parents walking with them through my diagnosis of Cerebral Palsy (CP) and helped connect them with all the resources. He was awesome and we really trusted him. He kept me as a patient as long as he could, and, when it was time to switch to a general practitioner, he recommended one based on her experience with people with disabilities. It wasn’t long after switching to hear that I started having some medical problems. I really liked her, but, unfortunately, she left only a few years after I started with her.

As I’ve written about in the past, 2012 was a hard year. I was having problems with my spasticity and ended up getting a Baclofen pump placed. That added three more doctors to my team—a neurosurgeon and two nurse practitioners. Three weeks after that, I had emergency gastrointestinal surgery, so that added a gastroenterologist and a general surgeon to my list of medical providers. Since then, I’ve had a slew of different problems ranging from a toe that needed to be amputated to a deviated septum that can’t be repaired due to having cp. Each issue usually requires me to see a different specialist.

There are very few doctors who truly understand CP. About eight years ago, after complications from a pump replacement surgery, I was referred to a Pain and Rehabilitation doctor.  He specializes in CP and understands how it affects the aging process. After the initial appointment, I had several different referrals for things. At first, yes, it was pretty overwhelming, but he has been such a huge help. He specifically blocks out extra time, so I can talk directly with him using my communication app.  I actually enjoy seeing him. It’s so nice having who truly understands CP.

Unfortunately, majority of doctors just have basic knowledge of what cerebral palsy is. Between the last week of June and the month of July, I had seven medical appointments all for various things. While only one or two were directly related to CP, all of them had an element that had to do with cp. Medical providers try their best to understand and address the issues at-hand, but, oftentimes, they’re just playing trial and error because they simply don’t know how CP will affect whatever it is. I appreciate their honestly when they tell me that they honestly don’t know how it will be with the level of severity of CP I have.

Several times, I’ve had doctors try to relate CP to different types of disabilities such as Autism or Multiple Sclerosis because they are more familiar with those. While I understand that some conditions have similar characteristics, it gets irritating when a doctor keeps doing it. I recently switched one of my providers due to this. I had my initial visit with my new provider a few weeks ago, and I’m still on the fence about how I feel. I understand that I have a pretty complex history, but, if I were a doctor, I think I’d at least glance at person’s file before initially seeing them. That said, I know it takes a couple of visits to develop a relationship with a doctor, so I’ll give it another couple times.

There are some doctors who I really connect with and others who are just there to get a specific task done. While I think it’s human nature to put more trust in the people who you connect with and like, it’s also important to realize that you don’t have to necessarily like an individual in order to trust him/her. Obviously, especially in stressful medical situations, it’s better to have someone who you connect with directing next steps.  However, in emergency situations, we need to remember that doctors have patients’ best interests in mind and it’s their job to do what’s best for patients.

As much as I’d love to just have an annual physical, that’s just not in the cards for me. While I don’t necessarily enjoy doctor appointments, they’ve become a regular part of my life. Doctors have literally saved my life multiple times over the years. While some doctors are more personable than others, I’m extremely grateful for the many I’ve had over the years!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors

 

Posted in: Stacy's Journal | 0 comments

A recent federal legal opinion determining that civil rights laws do not mandate state-funded home-based care over institutionalization has sparked widespread concern among advocates and affected families. This interpretation marks a significant departure from long-standing legal precedent that treated unjustified institutionalization as unlawful discrimination, creating fears that government assistance for home care services could be drastically reduced. Several state governments are already citing this stance in ongoing court battles to limit required community-based support and manage budget constraints. While defenders of institutional settings cite capacity limitations and resource constraints, disability advocates emphasize that rolling back home-care protections threatens personal autonomy, risks reversing decades of progress in community integration, and increases the potential for abuse and neglect.

Read more

Posted in: default | 0 comments

The future of home care relies on balancing self-directed care with robust oversight and program integrity. As demand grows for self-directed Medicaid programs—which allow older adults and individuals with disabilities to hire trusted family members or friends—the model offers a cost-effective alternative to institutional care while supporting unpaid family caregivers. However, its long-term sustainability depends on preventing fraud, waste, and abuse through continuous oversight, operational discipline, and modern technology like real-time timekeeping and electronic visit verification. Ultimately, embedding transparent safeguards into daily operations ensures that patient choice and flexibility are supported by strong accountability, building public trust and establishing a more sustainable healthcare model.

Read more

Posted in: default | 0 comments

Advocates and staff from the Aging and Disability Resource Center in Wisconsin are highlighting a critical shortage of supportive care for older adults, individuals with disabilities, and residents living with dementia, particularly in rural northwestern counties like Washburn, Burnett, and Douglas. With roughly 27% of the local population aged 60 or older, demand for assistance continues to outpace available resources, leaving an estimated half a million unpaid family caregivers across the state to shoulder the burden. Community members and care coordinators are calling on policymakers for systemic solutions, including expanded access to assisted living facilities, funding for respite worker programs, and enhanced social support networks to alleviate caregiver isolation and ensure proper care for aging populations.

Read more

Posted in: default | 0 comments
 / 241