News

Across the country, caregivers are sounding the alarm about what Medicaid cuts mean for the people they love. For families caring for children with complex medical needs, adults with significant disabilities, and aging parents with Alzheimer's, Medicaid pays for home aides, specialized equipment, therapies, and community-based services that private insurance often refuses to cover. Without it, many say their loved ones would be forced into institutions, pushed into medical bankruptcy, or left without life-saving care. Their stories make clear that for millions of Americans, Medicaid is not optional — it is survival.

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Switching insurance companies. Changing jobs. Switching doctors. Changing software programs. There are millions of different types of things that people change. Some changes are by choice while others are determined by situations or forced on people by circumstances out of their control. While some changes people have input in; others we don’t. When we don’t have input in the changes, it usually causes some tension and uneasy feeling. As human beings, we like say and having control over what’s happening in our lives. Generally speaking, things work better when people have some say in what is going on in their lives. Granted, there are exceptions to this, but, normally, things work better when people have some choice and input.

I first heard some chatter about Wisconsin moving to one Fiscal Employment Agency (FEA) for the IRIS Program several months ago. For those who don’t know what a FEA does, it basically does background checks, approval of workers, payroll, etc…for IRIS participants. Currently, there are three different FEAs that people can choose from. There used to be a couple more, but a couple have pulled out in recent years. FEAs are really what make the program run. In the 17 years I’ve been in the IRIS Program, I’ve been with three FEAs at different times. Each has its pros and cons. From worker approval times to timely payment of workers, to Electronic Visit Verification (EVV) systems, each FEA has their own positives and negatives.

IRIS participants know that dealing with a FEA can be incredibly frustrating sometimes. Just as an example—I get tickets for cab rides each month. I have to send in an order form at the beginning of each month for the next month’s tickets. It takes a month for the FEA to process the order and send payment to the vendor. Well, I hadn’t received my tickets for March yet, so I emailed the cab company. Come to find out, they hadn’t received payment from my FEA yet. My mom called my FEA and found out that the payment was delayed getting sent. Obviously, it’s not the end of the world that I didn’t get my cab tickets on time, but it’s a recent example of how frustrating it can be. Over the years, I’ve lost multiple workers due to not being paid on time or it taking too long for new people to get approved. I can’t even explain just how frustrating that is!

When I first heard that the state was planning to move to one FEA, admittedly, I didn’t pay as much attention as I should have. I was dealing with other immediate issues, and it wasn’t on my radar like it should have been. I don’t think it was widely advertised either. Unless people were involved in advocacy, they may not have been aware of this. I imagine that if was publicized a little more there would have likely been more pushback from advocates. The whole point of the IRIS Program about being able to self-direct and having choice. In my opinion, going to having one FEA completely dismantles the principle of the program.

The Request for Proposals went out awhile ago, and, just a few weeks ago, it was announced that a “notice of intent” was given to a FEA. As this news circulated in the disability community, people began talking. For starters, the one that was chosen would be completely new to Wisconsin—it wasn’t given to any of the three existing ones. A simple Google search of the name revealed that the FEA that the department intends to go with has had major problems in other states.  The kinds of issues vary from workers not being paid to it taking several weeks for workers to get approved. The opposite of what participants need—especially in this day and age where there is so much uncertainty surrounding the future of long-term care.

I realize that the Average Joe probably doesn’t understand why this potential change is such a big deal. It’s a complicated system and, for IRIS participants, the FEA is ultimately who physically funds our services and supports we rely on in order to live our daily lives.Amidst of already uncertain times, the last thing participants want to hear is that we’re going to have to deal with a whole new company and system that is known to have major problems.

Advocates weren’t given the opportunity to provide input on this, or if there was, it wasn’t well advertised. Doing this in a program that is supposedly “self-directed” is a huge step backwards. Rumor has it that there are a couple companies contesting the decision, so we’ll see what happens with that. Meanwhile, advocates are talking with the department and legislators telling them that this whole thing is a bad decision and how it would potentially impact people’s lives.

While we don’t know the outcome of this, it demonstrates how a seemingly minor change to many has the potential to completely disrupt life for others. The disability community will continue to advocate and hope for the best on this issue while also realizing that we may have to continue to advocate on this even after the final outcome has been has been decided. 

Change can be hard for everyone. While some changes are unavoidable, others are. When a change of this magnitude has the potential to change so much, input from those who’s lives it’s going to affect should be taken into consideration. As cliché as it sounds, the saying, “nothing about us, without us,” is poignant in this situation. As frustrating as it is, we will continue to advocate and let our voices be heard!

***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

Wisconsin's IRIS program is transitioning to a single contractor to manage payroll and background checks for caregivers, a move that has sparked significant concern among enrolled adults with disabilities. Participants worry that the administrative shift could lead to payment delays for their care workers, potentially making it harder to retain the staff they rely on for essential daily needs like showering and mobility. Because the program allows individuals to live independently rather than in institutional settings, any disruption in caregiver pay is seen as a direct threat to their ability to remain in their own homes.

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A new study from Special Olympics Health published in JAMA Network Open reveals that adults with intellectual and developmental disabilities (IDD) face a significant mental health crisis, being over nine times more likely to report anxiety or depression than those without disabilities. Despite having a higher symptom burden and being more likely to take medication, these individuals face massive systemic barriers to therapy, including high costs, a shortage of trained providers, and "diagnostic overshadowing." However, the research also highlights a path forward: participation in Special Olympics programming was found to reduce the likelihood of a depression diagnosis by 49%, underscoring the vital role of social connection and physical activity in closing these care gaps.

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Are you interested in presenting at the 2026 Self-Determination Conference?  We are seeking session proposals for Tuesday, October 20 & Wednesday, October 21, 2026.    

Click here to fill out the presenter form online. presenter portal.

This year’s theme: The Power of Self-Determination; Technology, Community and You will help people with disabilities lead more Self-Determined lives by offering tools to plan the life they want to live in the communities they choose!

Things to know when submitting a proposal:

• Proposals must include a self-advocate(s) as a lead or co-presenter.
• Panels should be limited to no more than 3 people. 
• Conference sessions must support Self-Determination and Self-Directed principles.

•  Sessions will be all in-person. Presenters must attend the conference
   in-person.

• Presentations should focus on practical, take-home strategies that people can implement in their lives.
• Sessions should not promote specific agencies or products. 
• Repeat or similar sessions from previous conferences will not be considered.
• Sessions will be 1.25 hours in length. Self-Advocate sessions will be 30 minutes in length.
• A typical session has an audience of 50-75 attendees.

If your session is accepted:

• Handouts: Presenters agree to submit the PowerPoint and other materials through the online portal by September 23, 2026. You are responsible for providing 50-75 copies of your materials for your in-person session. Please use plain language. 
• Equipment: A screen, A/V cart, LCD projector, laptop, and microphone will be provided in each breakout room. Bring your presentation on a flash drive or use your own laptop. 
• Presenters must register for the conference. Presenters must attend the conference in-person.

*By completing this form, presenters agree to turn in all materials and information by September 23, 2026. 

Submissions are due by noon on May 5, 2026.

About 1 in 6 US children has a developmental disability. People with IDD face waitlists spanning years for home and community-based care, forcing them into institutional settings. The social model of disability states that disability arises from societal barriers, not individual deficits. Supported decision-making, where individuals with IDD make choices with guidance, leads to greater autonomy and satisfaction.

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Medicaid covers in-home care through baseline benefits, HCBS waivers, and Community First Choice programs. Family members can get paid through "self-directed," "consumer-directed," or "participant-directed care" where recipients act as employers hiring family members within state rules. The 2024 80/20 rule requires 80% of HCBS funds go directly to caregivers. The One Big Beautiful Bill (2025) cuts Medicaid spending $1 trillion over 10 years, threatening HCBS programs.

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Self-Determination Network News:

February 2026

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

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

• Who Are Family Caregivers?: The National Alliance for Caregiving's 2025 survey found 59 million Americans provide care to adult family members, a 40% increase over a decade. Learn about some of the statistics this study revealed.
• Home Care in 2025:  The Kaiser Family Foundation surveyed Medicaid officials in the middle of last year and the results are interesting. Read about some of the facts this shows.
• Comfortable Wisconsin Towns: From healthcare to transportation, these Wisconsin towns are some of the most comfortable for seniors. For out which towns made the list.
• Ableism Research Study: The American Association of People with Disabilities is seeking input from people with disabilities and advocates to better understand how ableism shows up in everyday life and how it can be addressed. Learn more about this study and find out to participate.
• Work Requirements: Work requirements for Medicaid are coming in 2027. Read about some of the exemptions coming out that broaden previous "serious and complex" language to give states more flexibility.
• Immigration Changes Impact Long-Term Care: Wisconsin people who rely on personal care attendants are feeling the effects of the changes to immigration policies. Learn why.
• Listen: The executive director of the National Council on Independent Living discusses the current threats to disability rights. Take a listen.
• Older Americans Policy Recommendations: The Bipartisan Policy Center interviewed older adults through The People Say initiative to identify health care challenges. Find out what they recommended.
• Mother Fights for Caregiver Rights: A mother in Cottage Grove is advocating for caregiver rights. Read about her efforts.
• Autism Campus Inclusion Leadership Academy: Autism Campus Inclusion helps autistic students make their colleges better for people with disabilities. Applications due March 8th.
• Future Planning Webinar Series: Join the Wisconsin Board for People with Developmental Disabilities for a 4-part webinar series on future planning for people with disabilities, family members, and professionals.
• Watch: The One Big Beautiful Bill Act is expected to cut more than a trillion dollars in Medicaid and the the Children's Health Insurance Program by 2034. Watch this interview about what the cuts could mean for adults with disabilities.
• Black Disability Activists: February is Black History month. Read about seven activists who advanced disability rights.
• Airline Accessibility Reforms Indefinitely Stalled: The updated regulations from the Air Carrier Access Act in 2024 have been stalled. Find out what disability advocates are saying.
• Self-Direction Study: Brandeis University is conducting a study to explore the experiences of self-direction for disabled people of color and their families. The purpose is to learn about the challenges, supports, and benefits of self-direction for people of color. Learn how to participate.

Upcoming Events 

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

• Webinar: Understanding New Medicaid Requirements: February 18th, 12p.m. to 1p.m., Virtual 
• Survival Coalition Community Organizing Training Part 3: February 25th, 10a.m. to 1p.m., Virtual
• Future Planning Webinar Series:  Supported Decision-Making and Alternatives to Guardianship: March 4th, 12p.m to 1p.m., Virtual 
• Webinar: Ocean air, boardwalk memories—let’s go to the beach!: March 5th, 1:30p.m. to 3p.m., Virtual  
• Future Planning Webinar Series:  Lived Experience with Decision-Making: Young Adult Panel: March 11th, 12p.m to 1p.m., Virtual
• Disability Advocacy Day: March 19th, Monona Terrace and the State Capitol, Madison WI
• Future Planning Webinar Series: Financial Planning for People with disabilities and Family Members: March 25th, 12p.m to 1p.m., Virtual 
• Future Planning Webinar Series: Understanding Work and Benefits: April 1st, 12p.m to 1p.m., Virtual
•  2026 Family Voices Leadership Conference: April 15th & 16th, Virtual 
• National Self-Direction Conference: May 27th-29th, Minneapolis, MN 

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.