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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.



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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.



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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.

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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.

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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

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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

 


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.

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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.

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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.

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In a recent opinion piece, representatives from the Wisconsin Board for People with Developmental Disabilities highlight growing concerns over threats to disability civil rights and community living. They point to recent federal actions—including the U.S. Department of Justice rescinding integration guidance under the Americans with Disabilities Act, a pending Texas-led lawsuit against Section 504 of the Rehabilitation Act, and significant Medicaid cuts in H.R. 1—as critical developments that could erode independent living supports. The authors argue that these legal changes and funding reductions risk forcing individuals with disabilities into institutional settings, while also placing severe economic and caregiving burdens on small businesses, home care workers, and family members.

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