News

Self-Determination Network News:

September 2026

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Survival Coalition Forum: Medical Aid in Dying laws, implications for people with disabilities

 The Survival Coalition is hosting a series of policy issue forums this fall. Our first is about Medicaid Aid in Dying laws, and how these policies may impact people with disabilities and families. This first session will explore key issues, areas of concern, and existing frameworks in other states and countries. It will also examine how cost of care needs and societal perceptions of older adults and people with disabilities can influence who chooses or is offered medical aid in dying options. The event features two prominent national speakers: Anita Cameron, a disability justice activist with 44 years of community organizing experience and former Director of Community Outreach for Not Dead Yet, whose work was cited in the 2019 National Council on Disability report; and Barbara Lyons, the Special Projects Coordinator for the Patient’s Rights Action Fund, who brings over 40 years of experience in public policy, disability advocacy, and healthcare equality. The webinar will take place TOMORROW, September 15th, from 12:00 PM to 1:00 PM. While you can register online to attend live, the session will be recorded, and all event materials will be sent out to registered participants afterward.

Register now!

Join the Disability Vote Coalition for a Webinar: Be Prepared for the November Election 

With a critical statewide election approaching on November 3rd, the Wisconsin Disability Vote Coalition invites you to a dedicated voter preparation webinar on Thursday September 17th from 12:00 PM to 1:00 PM. Held in celebration of Disability Voting Rights Week 2026, this session will cover essential information regarding election accessibility, your rights as a voter, and an overview of what will be on the upcoming ballot.

Register here!

The Independent Living Council of Wisconsin Needs to Hear from You!

The Independent Living Council of Wisconsin is asking people with disabilities and their families to complete an anonymous survey to help set priorities for the state's new independent living plan. We encourage people to learn more about what the plan entails and take the survey.

Last Chance to Register!

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

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 this Friday to get the latest):

• Policy changes the administration is making:
  

  • State Governors object to U.S. DOJ memo reinterpreting community integration;

  • CMS posts information on Medical Frailty exemption; 

  • CMS Rule Restricts State Use of Medicaid Provider Taxes beyond HR 1 requirements;

  • HR 1 Caps on State-Directed Payments Could Cut Medicaid Spending Up to 25% in 17 States;

  • National advocates say HR 1 will result in higher Medicaid improper payment penalties for states;

  • Parents unsure if special education move will help or harm students with disabilities;

  •  Special education head at Education Department abruptly resigns;

  • What to do in Wisconsin if you don’t think your school is complying with IDEA. 

• Continued coverage of impacts of HR 1.
  
  
  • • Congress will not act in time to prevent home care cuts in states;
    • California’s Next Governor Will Face Destabilizing Surge in Uninsured;
    • Oregon Faces $1.3 Billion Medicaid Budget Hole From HR 1;
    • The parent caregiver ‘savings’ Arizona is chasing don’t exist — unless care disappears;
    • Michigan Free Clinics See 54% Patient Surge as Medicaid Work Requirements Loom;
    • Ohio: 50% food bank users have had to choose between paying for rent or food;
    • Indiana, long term power outage cost families their food stocks; then SNAP benefits were denied.

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.
This month, we're shining the Spotlight on Mackenzie. This Wisconsin disability advocate and policy pro turned her 2014 spinal cord injury into a mission to protect independent living. Stop by this month's Member Spotlight to get to know Mackenzie.
Who should we shine the spotlight on next?

Stacy’s Journal

"Whether it’s a teacher having lesson plans ready for a substitute or having Power of Attorney paperwork prepared for a loved one, having plans in place for when the unexpected happens, not only does it give people peace of mind, it also makes things a lot easier when an emergency occurs."

In this month's journal entry, Stacy talks about how important backup plans are for people with disabilities. She shares some of her unique backup plans she has for different scenarios. What are some backup plans you have in place?

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

• Deer Hunting Season: Wisconsin's 2026 deer season for hunters with disabilities features a new hybrid format that allows permit holders to hunt on sponsored lands from October 3 through 11, or hunt on any open public or private land statewide without a sponsor on October 10 and 11. Find out more details!
• Conditions Added: The Social Security Administration has added 14 severe genetic disorders, cancers, and neurological conditions to its Compassionate Allowances program, bringing the total to 314 conditions that qualify for fast-tracked disability benefits.  Learn which specific conditions have been added.
• Income Limits Prohibit Career Advancement: Strict Medicaid financial limits force working people with disabilities to choose between expanding their careers or keeping vital healthcare coverage, as higher wages can disqualify them from essential benefits that private insurance rarely covers. Read about how advocates are pushing for the limit to be changed.
• New Accessibility Requirements for Medical Equipment: New federal rules require healthcare providers to have accessible medical equipment, like exam tables and scales, and trained staff to ensure patients with disabilities receive proper care and equal access to treatment. Learn more about what these requirements mean.
  
  
• Input Needed on Transition Plan: The Wisconsin Department of Transportation has released its 2026 disability accessibility plan and is inviting the public to share feedback online, by email, or by mail until September 17.
  
  
• Services Landscape: Medicaid programs provide vital home and community services to help older adults and people with disabilities live independently, but state budget cuts, staff shortages, and long waitlists frequently limit access to this care. Find out how these affect people.
  
  
• Siblings Fight to Remain Independent: A brother and sister with visual impairments face an uncertain future as budget cuts and legal challenges threaten the civil rights mandate that provides them with independent, community-based care instead of forcing them into institutions. Read about how they're fighting to keep themselves in the community.
  
  
• Seniors Advocate to Stay in Their Homes: This guide explains that while most older adults prefer to stay at home, strict state rules, funding limits, and laws that favor nursing homes make it difficult for people with disabilities and seniors to access Medicaid's home care services. Read about what these laws say.
  
  
• Robot Research Study: A PhD student from UW–Madison is looking for adults with intellectual and developmental disabilities to participate in a paid study where they will make a salad with a robot and share feedback on how it works. Find out more and consider participating.
  
  
• Accessible Technology Security Study: The UW–Madison People & Robots Laboratory is looking for adults with intellectual and developmental disabilities to participate in a paid study where they will try out five new apps and share their thoughts on website security and privacy alerts. Learn more about this opportunity and consider participating or sharing it with others.
  
  
• Law Could Improve Housing Options: Enacted on July 11, 2026, the 21st Century ROAD to Housing Act updates federal policies to make housing more accessible and affordable for people with disabilities, notably creating a pilot program that funds home modifications like ramps and accessible bathrooms. Read about how this will hopefully create more housing options for people with disabilities.
  
  
• Summer Internship Opportunity: The American Association of People with Disabilities has opened applications for its 2027 summer internship program, which places students and recent graduates with disabilities in paid, 10-week remote or Washington, D.C.-based jobs to build leadership skills and career success. Applications due October 1.
  
  
• Lyft Removes Barrier: A new Lyft app update allows Medicaid waiver recipients without bank accounts to register and use fully funded rides for work and daily activities by removing the requirement to provide a personal payment method. Learn why this is so helpful.
  
  
• Immigration Policies Threaten Workforce: Strict immigration rules, wage pressures, and public assistance cuts are shrinking the immigrant workforce that cares for our aging population, worsening labor shortages and shifting the burden onto unpaid family members and expensive care facilities. Find out more about how these policies are affecting people's lives.
  
  
• The Bill for Caring: State Medicaid cuts are lowering pay for family caregivers and increasing waitlists for home care, forcing families to make hard financial choices while federal relief bills remain stuck in Congress. Find out why it's stuck.
  
  
• Exciting Employment News: Wisconsin has secured over $11 million in federal funding to clear its disability employment services waitlist and fully support career training for eligible residents through October 2027. Learn why disability advocates are so pleased.
  
  
• AI Controversy: An associate professor argues that universities should allow students to use artificial intelligence as a learning tool, noting that many students with disabilities rely on AI to organize notes and break down complex assignments rather than to cheat. Read about this controversy.
  
  

Upcoming Events 

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

• Survival Coalition Issue Forum: Medical Aid in Dying laws, implications for people with disabilities: September 15th, 12p.m. to 1p.m. Virtual 
• Webinar: Person-Centered Planning for Community Connection: September 15th, 12p.m. to 1p.m, Virtual
• Webinar: The ADA at Work: Real Stories of Accommodation in Action: September 15th, 1p.m. to 2:30p.m., Virtual 
• Disability & Deaf Community Conversation: Emergency Planning: September 15th, 6:30p.m. to 8p.m. Madison Municipal Building (Room 206) and Virtual
• Webinar: Advancing Caregiver Support Through Replicable Innovations: September 16th, 1p.m. to 2p.m., Virtual 
• Webinar: Be Prepared for the November Election: September 17th, 12p.m. to 1p.m., Virtual 
• Webinar: Accessible Tech: Effective Tools for Making Your STEM Content Accessible: September 17th, 1p.m. to 2:30p.m., Virtual 
• 2026 Aging, Disability, and Independent Living Network Conference: September 21st-23rd, Kalahari Resort, Wisconsin Dells WI
• Webinar: Making a Difference: Serving on Community Boards and Councils: September 22nd, 12p.m. to 1p.m., Virtual
• Webinar: Transportation Strategies to Strengthen Social Connectedness: September 22nd, 12:30p.m. to 1:30p.m., Virtual 
• Webinar: Using Your Lived Experience to Create Change: September 29th, 12p.m. to 1p.m., Virtual
• Self Determination Conference 2026: October 19th-21st, Kalahari Resort, Wisconsin Dells WI

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.

Meet Mackenzie. This Wisconsin disability advocate and policy pro turned her 2014 spinal cord injury into a mission to protect independent living. When she isn't busy serving as a board president or wrapping up an internship with the Wisconsin DHS, she is outdoors adaptive kayaking, hanging out with her Labrador, Willow, or starting DIY home projects she confidently (and mistakenly) assumes "should be easy!" We’re lucky to have her as a member of the Network!

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

In 2014, a spinal cord injury changed Mackenzie’s life, leaving her paralyzed and using a wheelchair. She spent the next three years in a nursing home—an experience that transformed the way she understands disability, independence, and choice. Since then, Mackenzie has turned that experience into advocacy, working to advance independent living, protect disability rights, and challenge systems that too often make decisions for people with disabilities. She now serves on several disability-related boards and advisory councils and was nominated to serve as board president of one of Wisconsin’s state disability rights organizations.

How are you involved with self-determination? What advocacy things are you involved in?

Mackenzie believes that self-determination is at the heart of almost everything she does, advocating for people with disabilities to have real control over their lives. Her work spans disability rights, public policy, independent living, and spinal cord injury research, all while fighting to ensure that lived experience is treated as true expertise. As she puts it, "because, honestly, we’re pretty good at knowing what works for us."

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

After 12 years away from traditional employment following a spinal cord injury, Mackenzie recently completed her first formally paid position—a public policy internship with the Wisconsin Department of Health Services. While her extensive advocacy work during those years was absolutely work, returning to formal employment marked a huge personal milestone. For Mackenzie, it served as a powerful reminder that while the next chapter can take longer to arrive than expected, it doesn’t mean it isn’t coming.

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

Mackenzie emphasizes that people should not confuse needing support with giving up control, noting that self-determination does not mean doing everything yourself. Instead, she believes it is about having a say in your own life and the supports needed to make your choices possible. She encourages others to learn their rights, know their options, and remain curious by asking questions. Crucially, she highlights the power of community, advising people to connect with others who have walked a similar path because, as she notes, "Sometimes lived experience is the best resource available."

What are some of your hobbies?

Outside of her advocacy work, Mackenzie loves getting outdoors for adaptive kayaking or archery, traveling, spending time with family and friends, and hanging out with her Labrador, Willow. She also enjoys tackling home-improvement projects—though she admits her definition of “this should be easy” has gotten her into trouble more than once. 😊

***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.

When a child is sick and can’t attend daycare or school, parents have to have a backup plan for who’s going to care for the child. When a vehicle breaks down, people have to figure out how to get to and from places. When an employee calls in sick for work, the employer has to come up with a plan how to make sure that whatever is needed gets completed for the day. When you get locked out of your house or vehicle, people normally have a spare key hidden somewhere. What do all these scenarios have in common? They’re all backup plans. People have backup plans for all sorts of things in life. Backup plans are meant for when the unexpected happens. Whether it’s a teacher having lesson plans ready for a substitute or having Power of Attorney paperwork prepared for a loved one, having plans in place for when the unexpected happens, not only does it give people peace of mind, it also makes things a lot easier when an emergency occurs.

People who have some extra challenges to navigate often have backup plans in place for multiple things that most people never even think about. Recently, I had problems with my electronic door to my individual apartment. I have two openers—one on my wheelchair and the other one is mounted on a little table that’s on my bed. The openers started not opening the door pretty frequently. Obviously, that poses a problem when you have to let caregivers in—especially in the morning when I’m stuck in bed. If caregivers can’t get in, I’m not getting up. It’s as simple as that. So, as a backup, there is key box outside of my door. My workers now know the code for the box in case the electronic door isn’t working. This is also mandated to have by the housing authority and fire department in case of an emergency.

Key boxes are far from the only backup system I have. As I’ve touched on in previous entries, when pieces of durable medical equipment (DME) breaks or stops working, people who rely on them often have to have a backup plan. There are certain pieces of equipment that people rely on to live. Some people rely on things like a ventilator or a feeding pump to survive. I can’t speak for sure, but I’m assuming that people who rely on those types of things have backup equipment in case of emergency.

While, I’m fortunate not to rely on equipment truly detrimental to my physical ability to breathe or eat, I have some equipment that I depend on to be functional and independent. When my electronic Hoyer lift stops working, caregivers aren’t able to transfer me. A few months ago, it started being glitchy—it would start and stop. It was nerve wracking for me because if it stopped working, my caregivers wouldn’t be able to take care of me. It began happening more and more frequently, so my parents brought up the manual lift that I have at their house. My dad took the electronic lift back to their house to try to replicate the problem, but, of course, it worked perfectly fine the hundreds of times he tried it. To ease my mind, I currently have both lifts in my apartment. It’s the same thing with my electronic wheelchair. If/when it breaks down, I’m unable to move around independently. Like I discussed in previous entries, power wheelchairs are often customized, so it’s not like I can just use any rental chair my DME provider has around. It doesn’t always work out, but, fortunately, I currently have my old wheelchair in my apartment I can use for backup. It has come in handy more than once.

For people with disabilities who require care, backup plans are essential. Most long-term care programs require participants to have backup plans. Unfortunately, due to the long-term care system as a whole being inadequate, the care portion of the backup plan usually falls on families. This begs questions like: what happens when a person doesn’t have any family or what happens when families can’t take care of the person? Questions like these are what keeps many families—including mine—up at night. As I’ve talked about before, even though I’ve recently been on a really good streak of caregivers for about a year now, I realize that my time living independently is likely limited. I’m fortunate that my parents are still able and willing to be my backup caregivers. That said, I’m well-aware that they aren’t getting any younger. I’m the first to admit that we don’t have a backup plan for when the time comes when they aren’t able to help me anymore. Why, you may ask? Simply put, there aren’t any good options. I’m lucky to have a good relationship with my sister, and she’ll help me figure things out. Obviously, I hope to be settled somewhere well before the time comes, but knowing that she’ll be there to help me figure things out is somewhat of a comfort.

Obviously, there are many situations where you can’t have a backup plan for, but, as someone with high anxiety, having backup plans for multiple things that I depend, on brings me some comfort. Although, the backup plan may take longer or may not be ideal, it often eases our minds knowing that there is a plan in place if something happens. I know that I will always have backup plans for as much as possible in my life!

***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.