News

Self-Determination Network News:

February 2026

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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.

The Self-Direction Center is happy to support Brandeis University in recruiting participants for a study on self-direction.

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.

We need help in finding a few more participants to be in the study.

Individuals who answer yes to the below may be eligible to participate in this study. 

• Are you 18 years of age or older?
• Are you a disabled person of color?
• Do recruit, hire, train or supervise your direct care workers AND/OR 
• Do you have control over a budget and decide how to spend the money on your services?

The U.S. Department of Transportation updated regulations under the Air Carrier Access Act in late 2024 to improve air travel for passengers with disabilities after decades of persistent access problems and weak enforcement. Major airlines sued to block the rule, and the Trump administration’s Transportation Secretary, Sean Duffy, has now indefinitely suspended enforcement of key provisions, including airline liability for damaged wheelchairs, mandatory disability training, passenger notification of rights, and reimbursement for flights that can’t accommodate mobility devices. Disability advocates argue that airlines have long failed to voluntarily ensure accessibility, despite receiving billions in taxpayer bailouts, leaving wheelchair users still waiting for safe and equal access to air travel.

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February is Black History month. The article highlights seven Black activists who advanced disability rights: Brad Lomax (Section 504 sit-ins organizer), Dennis Billups (Section 504 protest leader), Fannie Lou Hamer (voting rights activist), Willie Mae Goodman (fought institutionalization at Willowbrook), Louise B. Miller (challenged segregation of Deaf students), Donald Galloway (Berkeley Center for Independent Living), and Lois Curtis (lead plaintiff in Olmstead v. L.C., affirming the right to community living).

Read more

When an oven or refrigerator isn’t working, you call an appliance store and have a technician come diagnosis the problem and either fix the issue or tell you that you need a new one. When a vehicle isn’t working, you call a mechanic to find out what the problem is and to determine next steps. In both of these cases, there are multiple places to call for help. If your vehicle needs to be in the shop for an extended period of time, you can get a loaner vehicle or figure out other means of transportation relatively easily. Sure, it’s an inconvenience, but there are ways to get to and from places. Same thing with appliances—when a refrigerator malfunctions, there are coolers and ice people can use to keep the food cold; when an oven stops working, there are microwaves or things like air fryers to cook food. Again, inconveniences, but there are relatively doable solutions to get by without the for the time period it takes to either get it fixed or get a new one. What happens, though, when customized equipment people rely on to live their lives malfunctions? Most of the general population will never even have to think about that, but, for people who have to rely on durable medical equipment and assistive technology to literally be able to function, having a mobility device or other pieces of equipment stop working, can often be debilitating.

“My computer is like my baby,” I recently said while texting my mom one night. In early January, my computer started occasionally glitching. For awhile, I chalked it up to my Internet provider having issues. I had a virtual meeting where the issue became more prevalent, so I knew I needed to look into the problem further. I went online and ran all of the general things that the Internet provider’s website said to do. That didn’t fix the problem, so I had one of my workers, so I had one of my workers call the provider. She spent an hour and a half on the phone trying different things. Unfortunately, nothing they had her do solved the issue. A few days later, my parents came to look at it. Nobody could figure it out. Keep in mind that I spend all day on the computer, so during this period I was trying my best to make it work even though it was glitching more and more. We eventually had the Internet company come to my apartment. They replaced all of their equipment thinking that was the problem. Unfortunately, that wasn’t the case. That’s when I really started to panic because I knew it meant this was a much bigger issue. My parents ended up unplugging everything from the computer tower (including my eye gaze system and my adaptive keyboard) and taking it to a computer place to have diagnostic tests done on it. This made me extremely nervous because everyone knows that you don’t touch assistive technology equipment that’s working—it had to be done, though.  Low and behold, testing found that the processor was going bad which meant that I need a whole new computer.

When you rely on assistive technology to use the computer, buying a new computer isn’t as simple as it sounds. The last several computers I’ve had were bought and setup through an assistive technology evaluation which meant a specialist helped me figured out which computer worked with my specialized equipment and set it all up for me. However, this time I knew that wasn’t going to be possible for a couple reasons. The first being timing. I knew my computer wouldn’t last the several months to just to get funding approved for an eval regardless of which avenue I went through. Second, I also know that the assistive technology specialist who had done my last computers is no longer at my Independent Living Center.  We called to see if they found a replacement for him, but they haven’t. So, my parents and I were on our own to figure it out. I bought a membership to the Best Buy Total program which included diagnostic testing, consulting, and transferring data to a new computer. My amazing parents made several trips up to Oshkosh to work on this. I emailed the rep from the eye gaze company to get the requirements for the eye gaze system that I have. I bought a computer online, my parents unplugged everything again, took everything ( including my keyboard and eye gaze system) to Best Buy again, and they transferred everything. I was without a computer for about 48 hours which was super weird for me—I didn’t know what to do with myself. My parents came up again, picked everything up again, brought it back to my apartment, and set it all up. Miraculously, everything worked! Major kudos to Best Buy and my parents. I can’t describe how nerve-wracking it was for me to have people unfamiliar with my assistive technology equipment setting up my computer. I depend on it for so much.

Mobility devices, such as electric scooters, power wheelchairs, and power lifts also have the ability to malfunction. I’ve used a power wheelchair for 38 years, and I’ve had countless problems with chairs. From motors going out, to joysticks malfunctioning, to wheels falling off… The list is endless. Just like a vehicle, when something is wrong with my chair, it has to go into the shop. When I was younger, it wasn’t as big of a deal because I could just use my stroller or manual wheelchair because I didn’t need to be as independent. As I got older, we kept old power wheelchairs for backup. When I was a teenager and in my early 20s, my body adjusted to the old chair pretty well so it wasn’t a big deal; however, as I age, my body often has a really hard time adjusting to an old chair. Each chair has a slightly different customized seating system and it takes a while for my body to conform to it. The seating isn’t the only thing that takes some adjustment. Often, chairs are slightly higher or lower than one another. When I get a new wheelchair, other equipment such as my computer desk and kidney bean table, have to be adjusted so I’m able to access them. When I have to use an old wheelchair, I’m not able to access those things without adjustments being made. Needless to say, when something goes wrong with my wheelchair, it’s an ordeal.

I just discussed some of my experiences with my devices. Others have different experiences with the equipment that they have. It’s often not as simple as “getting a new computer” or “using a loaner wheelchair.” Many times, there are several factors that needs to be considered.  I hesitate saying that you get used to having to jump through multiple hoops to get what you need, but the fact is you do. You think about things that nobody else will because you’re the person using the equipment. There have been multiple times where I brought up a critical issue about a piece of equipment that nobody else thought about.

You learn what works best for you and you learn that you have to speak up when something isn’t going to work for you. As much as I wish I could just buy a new computer or get a loaner wheelchair, that’s just not in my cards. I’m beyond blessed to have an incredible support system who is willing to help me figure these things out!

***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

Meet Tanya. This music-loving auntie is just starting to get involved in disability advocacy. She’s looking forward to moving out and becoming more independent. She loves to find resources for people to solve problems. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little bit about yourself.

Tanya is a 38-year-old woman who works at Bath and Body Works. She has seven nephews who she adores. They range in age from 4 to 22. While the older ones work or are in school, the younger ones like to do from building things with blocks to making obstacle courses. “I’m also considered everyone’s auntie,” she tells us.

Tanya shares that hydrocephalus (water on the brain) is her main disability. She also has mild cerebral palsy and spina bifida.

How are you involved with self-determination? Why did you join the SD Network?

Tanya shares that she is just beginning to get involved in disability advocacy. She serves on two committees for Molina MyChoice. She enjoys being able to make suggestions on how to help others. She also is currently taking the Partners in Policymaking course. She loves learning about the different legislation and the representative branches. She also likes meeting new people.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Tanya is excited that she’s looking for a place to live. She’s looking forward to becoming more independent and being able to ride the bus places. She's also excited to be able to walk or ride her bike places if close enough. 

What tip or resource would you like to share with people who want to be more self-determined?

Tanya shares that she loves to help people find answers to questions they have. Using her own experiences, she is good at finding a variety of different resources for people.

What are some of your hobbies?

Tanya doesn’t just have one hobby. She is very open to trying almost anything. One of her favorite things to do it listen to music. The genre of music usually depends on her mood. She listens to anything from country to hip hop. She can switch genres in an instant! “It helps get creative juices flowing,” she says.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

AARP and the National Alliance for Caregiving report that one in four American adults are caregivers.  Katie Moureau, in Cottage Grove, is a mother to five boys and the caregiver to those who require additional care. Between administering medications, special diets, and several appointments throughout the week, Moureau said she can’t work because her boys need around-the-clock care. The Survival Coalition of Wisconsin Disability Organizations surveyed 525 caregivers. It found that 60% of unpaid caregivers provide care equal to or exceeding a part-time job.

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