Self-Determination Network News:

November  2026

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Disability and Aging Policy Forum 

The Winner Is...

We loved seeing so many of you at the Self-Determination Conference last month. Thanks to everyone who participated in the discussion we had on the Network. There were many great responses to the question: What is your favorite piece of technology? Congratulations to Desiree Matias who won the drawing for a tablet. She's mom to a 17 year-old son who has a disability, and she was there to learn about services, gather information, and meet people who may have similar circumstances.

We encourage you to keep adding to the discussion, so we can continue to help each other by collecting ideas.

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 November 13th to get the latest):

• Wisconsin:  Election Overview, Rising uncompensated care, rising ACA premium costs
  
  
• Congress: Election Overview, lame duck session, what the election results could mean for Medicaid and programs for people with disabilities
  
  
• Federal Administration: How people with disabilities are being caught in Ohio, Minnesota, and California by home care fraud actions that disrupt care; CMS delays in distributing funds to hospitals and delays Rural Transformation Fund grants to states; Judge’s ruling means medically frail do not have to prove they cannot work; federal actions collectively impact autism community
  
  
• Impact of HR 1: DE warns Medicaid cuts threaten coverage; Georgia program that was model for HR 1 work requirements may end; unclear how HR 1 short term unemployment exemption will be implemented; South Dakota voters vote to keep Medicaid expansion; West Virginia SNAP and Medicaid participants may have two sets of work requirement paperwork to do to keep food assistance and health care coverage

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

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 Nicki. From fighting for her right to attend public school as a child to securing accessible high school library doors as an elected leader, she has spent her life proving that every voice deserves a meaningful seat at the table. Stop by this month's Member Spotlight to get to know Nicki.
Who should we shine the spotlight on next?

Stacy’s Journal

"Living with significant physical limitations, you learn that you do indeed stick out in many situations. Albeit, it can be very difficult to accept at times, you learn that it is okay that you are noticed due to being different. "

In this month's entry, Stacy talks about the importance of people with disabilities showing up in the community. She shares some personal experiences where she has attended events and stuck out due to having physical limitations, and she opens up about how she felt. Have you had similar experiences?

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

• Virtual Resource Binder Carl created an amazing virtual resource binder with information about all kinds of services for people with disabilities in all 72 counties in Wisconsin. He's looking for feedback on this great tool. Check it out and let him know what you think.
• Home and Community Based Services Statistics: A new study found that nearly a third of low-income older adults use Medicaid home and community services for at least five years, while those who stop usually pass away, move to a nursing home, or transition to independent community living. Learn what more the study reveals.
  
  
  
• Progress Report: An independent federal agency released its annual report highlighting record employment gains for people with disabilities while warning against policy threats to Medicaid, accessibility rules, and the Americans with Disabilities Act. Find out some of the details included in this report.
• Smart Glasses Controversy: Smart glasses give life-changing independence to blind and deaf individuals, but public concerns over privacy and filming have led to calls for bans that advocates fear could restrict access to these essential disability aids. Read about this controversy.
• Concerns over Work Requirements: Many people with long-term disabilities risk losing their health insurance during the two-year wait for Medicare because new Medicaid work requirements starting in January 2027 could cut off their coverage unless they navigate complicated paperwork to prove they are medically unable to work. Learn more about why advocates are concerned.
• Worries over Changes to Health Survey: Budget cuts and fewer staff are forcing federal officials to cut the National Health Interview Survey nearly in half, sparking fears among advocates that the shorter questionnaire will undercount disabled Americans and mask their health needs. Read about why this is so concerning.
• Social Security Causing Stress: An individual with a disability faced immense financial stress when the government accidentally overpaid their benefits despite income being reported correctly, illustrating how outdated systems and strict asset rules penalize disabled people who try to work. Read his story.
• Administration Cracks Down on Homelessness: An administration policy memo making it easier to institutionalize unhoused individuals with mental health issues, combined with fewer federal civil rights protections, has sparked fears of a nationwide rollback of disability rights and a rise in forced institutionalization. Find out why advocates are concerned.
• Worries over Trump Accounts: New government savings accounts for babies include a one-thousand-dollar contribution that could accidentally disqualify disabled youth from future disability and healthcare benefits due to outdated program asset limits unless the money is moved to a special account by age seventeen. Find out more about these accounts.
• Self-Direction Brief: A health plan association released a new guide offering actionable steps to improve and sustain programs that let people manage their own long-term healthcare services and supports. Take a look at it.
• Preventing Fraud: A 2026 survey found that nearly all states use multiple strategies, including checking visits electronically and increasingly using artificial intelligence, to prevent fraud and abuse in their Medicaid home care programs. Learn what else the study found.
• Legislative Priorities: The Wisconsin Board for People with Developmental Disabilities shared its goals for lawmakers, focusing on protecting the rights of people with disabilities to go to school, get care at home, and live and work in their own communities. Read through these and share them with your legislators.
• New Movie: A writer reflecting on a new movie about a historic disability rights protest contrasts the film's success with ongoing real-world barriers like airline travel struggles and recent legal threats to community living protections, urging the next generation to defend these vital rights. Learn about this film.
• Voting Challenges Persist: Despite having strong laws for accessible polling places and curbside voting, Wisconsin still faces a large voter turnout gap among people with disabilities due to low awareness and poor implementation, meaning the state needs better outreach and education to help disabled residents vote. Read about what needs to be done.
• Judge Blocks Rule: A federal judge partially blocked a strict rule that forced chronically ill individuals to prove their conditions significantly impair them to get a work exemption, ruling that the change would harm states by forcing them to alter their Medicaid systems. Find out what this means.
• Long-Term Care Reform: A new policy proposal aims to improve long-term care by creating a universal home-care system and increasing caregiver support, but critics worry it favors home care too much and underestimates the financial and structural challenges of the reform. Read what this would do.
• SSI Increase Causes Concerns: Although monthly benefits are set to rise past one thousand dollars next year, outdated program rules still prevent disabled and older adults from having more than two thousand dollars in savings, leaving them at risk of losing their vital assistance if they try to save for emergencies. Learn what is being done to solve this. 
  
  
  

Upcoming Events 

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

• 2026 Fall ADA Coordinator Conference: November 16th-18th, Virtual
• Webinar: Scaling Digital Accessibility through ServiceNow: From Requests to Results: November 17th, 12p.m. To 1:30p.m., Virtual 
• Webinar: Mind Your Ps and Qs: Web Access for ADA Coordinators: November 19th, 1p.m. to 2:30p.m., Virtual
• Webinar: Amplifying Access: December 3rd, 1:30p.m. to 3p.m., Virtual 

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.

From fighting for her right to attend public school as a child to securing accessible high school library doors as an elected leader, Nicki has spent her life proving that every voice deserves a meaningful seat at the table. An attorney, dedicated public servant, and fierce disability rights advocate, she champions inclusion, dignity, and equal opportunity at every decision-making level—and when she isn't breaking down barriers in her community, you can usually find her diving into a good book, cheering on college basketball, or hanging out with her famously named cat, Vincent Van Goatee.

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

Nicki's story is centered on the importance of having a voice, being included, and ensuring everyone has the opportunity to participate in decisions that affect their lives. As a longtime advocate for people with disabilities, inclusion, accessibility, and equal opportunity, much of her work has focused on ensuring that people too often left out of conversations have a meaningful seat at the table.

She also had the privilege of serving on the Madison Metropolitan School District Board of Education. That experience reinforced her belief that public institutions have a responsibility to listen to the people they serve, especially individuals and families whose voices are not always heard. Whether she is working on disability rights, public education, or community issues, Nicki always comes back to the same core principle: "People should have the opportunity to make decisions about their own lives, and their voices should matter."

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

Self-determination has been part of Nicki's life for as long as she can remember. When she was five years old, she was told that she was uneducable and should be institutionalized, but she and her family fought for her right to attend public school alongside other children. That early experience taught her something fundamental: "People with disabilities should not have other people decide what they are capable of achieving. We should have the same opportunities to make choices, take risks, pursue our goals, and direct our own lives as anyone else."

She has carried that belief into her work as an attorney, a disability advocate, and a public servant. Her focus areas include:

• Education rights: Fighting for inclusive education and ensuring students with disabilities are not excluded, isolated, or unnecessarily disciplined.
  

• Disability rights: Advocating for accessibility, dignity, equal opportunity, and the right to participate fully in community life.
  

• Self-advocacy: Encouraging people with disabilities to speak for themselves and ensuring decision-makers listen to them.
  

• Community inclusion: Supporting opportunities for people with disabilities to live, work, learn, and participate in their communities.
  

• Public policy: Working to make government and public institutions more accountable to people with disabilities and their families.
  

Nicki also serves on the Madison Metropolitan School District Board of Education and the City of Madison Disability Rights Commission. She believes that people with disabilities need to be represented everywhere decisions affecting communities are made, especially emphasizing the principle, "Nothing About Us Without Us."

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

Nicki is most excited about the addition of accessible doors at the Madison Metropolitan School District's (MMSD) four comprehensive high school libraries after a four-year fight. She believes that something as ordinary as opening a library door should never become a barrier to participating fully in a school community, stating: "Accessibility is not a privilege, a favor, or an optional accommodation. It is a right."

For students who use wheelchairs or have mobility limitations, a heavy door can mean losing independence or feeling singled out. Nicki has pushed for this issue because she believes accessibility must be part of how the district plans, budgets, and makes decisions—not something addressed only when someone complains or when a building undergoes renovations.

The fight for accessible library doors is about much more than hardware; it is about recognizing that students with disabilities deserve the same independence, dignity, and opportunities as every other student. This achievement highlights why disability representation and advocacy on the school board matter, ensuring leaders at the decision-making table recognize barriers that others may never notice. While proud of this progress, Nicki emphasizes that the district cannot stop with four schools, urging public institutions to continually ask whose needs have not yet been considered.

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

Nicki encourages people to get to know disability laws and use the website wirightslaw.com to find documents to help advocate.

What are some of your hobbies?

Nicki's favorite hobbies are reading, watching college basketball, and spending time with her cat, Vincent Van Goatee.

***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.

The Wisconsin Board for People with Developmental Disabilities (BPDD) released legislative policy priorities that focus on upholding the rights of people with disabilities to receive care at home, get an education, and live and work in their communities.

People with disabilities fought for decades for laws that ensure that we cannot be set aside and locked away in institutions. A recent U.S. Department of Justice memo says these laws do not give people the right to live in their own homes and communities. Medicaid cuts and federal actions targeting home care funding threaten the care infrastructure Wisconsin has built to prevent people with disabilities and older adults from unnecessarily ending up in costly Medicaid-funded nursing homes and other institutional settings.