SD Network

News


The provided Forbes article outlines the growing political debate over reforming Medicaid's Long-Term Services and Supports (LTSS) benefit, highlighting four primary policy paths: Republican-led efforts to cut spending and tighten eligibility to combat perceived fraud; Democratic proposals to expand Medicaid by making home-based care a mandatory federal benefit; a shift toward moving home care into Medicare to increase public support and portability; and the creation of universal public insurance programs, similar to Washington State's model or the proposed WISH Act. While there is a consensus that the current system is failing frail older adults and those with disabilities, significant ideological divides remain regarding whether to enhance the safety net, transition to a social insurance model, or leave families to manage care costs independently.

Read more

Posted in: default | 0 comments

The shift toward self-directed care is transforming the U.S. healthcare landscape by moving away from agency-managed services to a model where individuals take a central role in managing their own care, including selecting caregivers and setting schedules. This transition is driven by a growing demand for personalized, home-based services and a critical shortage of professional healthcare workers. By formalizing and compensating family members and friends as caregivers, self-direction expands the workforce while utilizing modern technologies like electronic visit verification to maintain oversight and program integrity. Ultimately, the model is evolving from a niche alternative into an essential component of long-term care that aligns system efficiency with the personal and cultural preferences of patients.

Read more

Posted in: default | 0 comments

Self-Determination Network News: May 2026


By SD Network, 2026-05-13

96

Self-Determination Network News:

May 2026

Connect Share |Learn http://sdnetworkwi.org



Federal Fallout Update

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 (a lot has happened since the webinar...we encourage you to tune into tomorrow's webinar to get the latest):

  • State:

    • Deal that would reduce long-term revenue for short term spending increases possible 

  • Congress:

    • Federal budget,

    • What’s in the 2026 Reconciliation bill,

    • what health care cuts and changes are being floated for a 2027 reconciliation bill,

    • HSAs as a health care policy,

    • impacts on ACA coverage and health care providers because of ACA subsidy expiration.

  • Policy changes the administration is making:

    • CMS withholds another $91M in Medicaid funding from Minnesota,

    • Minnesota Medicaid funding freeze puts pressure on people who rely on services,

    • Three policies that are reviving old ideas

  • Continued coverage of impacts of HR 1.

    • Nebraska implements prove you’re working/exempt requirements,
    • States where voters forced Medicaid expansion are hoping strict work requirements will reduce how many people are in Medicaid,
    • Low income workers face new challenges that could impact coverage,
    • Study shows the “truly needy” won’t be spared from Medicaid cuts,
    • States looking to reduce Medicaid spending may change what drugs are covered,
    • Why 4.3M people have already lost food stamps.

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

2026logosdcfinal.png

Call for Exhibitors 

This year's Self-Determination Conference will be held October 19th-21st at the Kalahari Resort in Wisconsin Dells. Exhibit tables will be available on Tuesday October 20th and Wednesday October 21st. Space is limited and only applications from exhibitors that directly support self-determination and self-direction in Wisconsin will be accepted. All applications will be reviewed by a committee and selected based on interest, needs, variety, and mission of the conference. Placement at the Conference will be on a first come basis. Applications are due July 20th.

Calling all Micro Business Owners and Artists!

 Micro businesses run and created by people with disabilities are encouraged to apply. Artists can sell their products and/or services. Applications are due July 20th.

spotlight.jpg

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.
For this month, we're shining the Spotlight on Brett. Stop by this month's Member Spotlight to get to know Brett.
Who should we shine the spotlight on next?

128 Stacy’s Journal






"Of course, we all have obligations such as work, family things, and other things that we have to do, but everyone should take time to do things that fill their own buckets sometimes. In this day in age where everything often seems so hustled and bustled, we need to take the time to do whatever fills our own buckets."

For May's entry, Stacy talks about filling our buckets and shares some of the unique things that fill hers. What things fill your bucket?









icon 2.jpg

Check out the Latest Videos!

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.

Check out the newest videos on the channel:

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).


196

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

  • Watch: The National Council on Independent Living has launched a video oral history series preserving firsthand accounts from leaders of the Independent Living movement. Watch this awesome series.
  • Medicaid Coverage: A new report from the Urban Institute warns that between 4.9 and 10.1 million Americans could lose Medicaid coverage by 2028 due to the One Big Beautiful Bill Act, a budget law signed by President Trump in July 2025. Learn how many people in Wisconsin are at risk of losing benefits.
  • Proposed Requirement to Report Wages: In its March 2026 annual report to Congress, the Medicaid and CHIP Payment and Access Commission recommended that the Centers for Medicare & Medicaid Services require states to report hourly wages for home- and community-based services workers. Find out why this requirement would be helpful.
  • Others Must Step Up: Some people are saying that a coalition of private-sector organizations, states, and clinical societies needs to be formed to step into the leadership void that is the result of the dismantling essential essential infrastructure and funding for Americans with disabilities. Read about this non-federal response should focus on.
  • Care as a Public Good: A brief argues that the United States must shift from viewing care as a private, individual burden to a shared public infrastructure to foster a more equitable economy. Read to find out more about why the shift is necessary.
  • Outcomes of Family Caregivers: A new study  found that people whose primary caregiver is a paid family member or friend report significantly better outcomes than those supported by agency-employed staff. Find out why.
  • Rule Delayed: The U.S. Department of Justice has issued an interim final rule delaying the implementation of new ADA Title II web accessibility standards by at least one year. Learn why disability advocates are concerned.
  • Take Survey: How do people with and without a disability think about the experience of a disability? A team of researchers and disability advocates would appreciate your input. Learn more about this.
  • New Podcast about Self-Direction: Get Fired Up is a new podcast hosted by Cindy and Jamie from Community Horizons, a support broker agency in Wisconsin that helps people with disabilities hire and manage their own caregivers.  Check it out.
  • Backlash over Comments: Health and Human Services Secretary, Robert F. Kennedy Jr., is facing backlash from disability advocates after comments he made about Medicaid home care programs that pay people to take care of relatives. Find out why.
  • Kids Forced to Become Caregivers: This article argues that due to federal cuts more children are being forced into caregiving roles. Read about how cuts will further worsen the caregiving crisis forcing children to be caregivers for family members.
  • Five Accessible Cities: For travelers with mobility challenges, things such as robust public transportation options and walkable city centers are often key. Learn about five top-notch cities in the US that are accessible.
  • Fears of Cuts to Social Security: A recent ProPublica investigation reveals that the Trump administration is pushing a rule change to the Supplemental Security Income (SSI) program that could reduce or eliminate benefits for approximately 400,000 people with disabilities. Read about what the change could mean.
  • Home and Community-Based Services Improve Outcomes: This research brief from the Community Living Policy Center highlights that Medicaid Home and Community-Based Services (HCBS) significantly improve quality of life while proving more cost-effective than institutional care. Learn about some of the stats on the benefits of HCBS.
  • Disability Advocate Speaks Out: A Wisconsin self-advocate is speaking out regarding the significant Medicaid cuts mandated by the One Big Beautiful Bill Act signed in 2025. Read about what the feared impacts.
  • Disability Employment Ranking: According to recent data, Wisconsin ranks in the top 20 for disability-inclusive employment. Find out where we rank and what's it based on.

128 Upcoming Events 

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

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. 

196

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.


Wisconsin currently ranks 18th in the United States for disability-inclusive employment, with 51.0% of its disabled population in the workforce, according to recent data analyzed by Everway. The study, which utilized figures from Disability Statistics, identifies South Dakota as the national leader with a 61.5% employment rate, while West Virginia sits at the bottom with 36.4%. Beyond the rankings, the report emphasizes that geography continues to dictate opportunity and suggests that businesses can bridge this gap by adopting neuroinclusive practices, such as rethinking traditional interview processes and championing employee resource groups, to tap into a significant and often overlooked talent pool.

Read more.

Posted in: default | 0 comments

The Wisconsin Independent article highlights the concerns of Jason Endres, a Wisconsin man with spina bifida, regarding the significant Medicaid cuts mandated by the One Big Beautiful Bill Act signed in 2025. The legislation is projected to reduce federal Medicaid spending by $1 trillion over a decade, which advocates and healthcare organizations warn could lead to hospital closures and a loss of coverage for millions, including those with disabilities who rely on at-home care services. While Republican supporters like Representative Derrick Van Orden argue the law's work requirements and rural health programs focus resources on the most vulnerable and root out waste, critics point out that the resulting revenue losses for hospitals—estimated at $24 billion annually—will disproportionately harm rural communities' access to essential care.

Read more

Posted in: default | 0 comments

Member Spotlight: Brett


By SD Network, 2026-05-03

IMG_2601.jpegMeet Brett. This history buff has aspirations of running for office one day. As a recent Partners in Policymaking grad, he is looking forward to getting more involved with community engagement. He recently graduated with a degree in Health and Wellness and is looking forward to continuing his education. He encourages people not to segregate themselves and to be stubborn but accepting. We’re so fortunate to have him as a member on the Network!

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

Brett shares that he was born with two speech disabilities, Apraxia of Speech and Dysarthria. The earliest his speech affected him was when he was a few years old at Disneyland, where an elderly couple complained about him “screeching like a monkey”. Throughout his childhood, he was in speech therapy in school, summer school, and Children’s hospital. He explains that it was very hard to see the other kids “graduate” from his speech therapy groups, and he always wondered when it’d be his turn. Still to this day, his speech disabilities are apparent, but he has finally accepted that this is something about him that will never change. “I had big dreams about where I wanted to go to college, what career I wanted to be, and the life I wanted to live. I had hoped I would “grow out” of my speech disabilities by age 18,” he says.

Pulled out of in-person school freshman year by his mother, Brett started attending an online school before COVID. Socially, he was isolated, and he felt segregated due to his disability. He explains that he always wanted to go to private school as a young kid as he felt it must be better quality education; however, his mother would tell him that they would never accept him due to his disability. Systematically, he feels that the school system failed him as the bias of teachers had a major effect on him. “When I was 18, I was thrown into the world without any path of transition between school to workforce,” he tells us.

Brett never felt like he could go to school or apply for most jobs because he felt like his speech disability prevented him. He interviewed about 100 times before someone finally hired him for his first job. “I remember every interview where I was discriminated against without any way to prove the ADA violation. I felt like I was forced to look for only cleaning and dishwashing jobs as those didn’t involve speech for my whole life. Furthermore, it was very hard making social connections, as I would not speak to anybody,” he explains.

Over the years, as Brett got older, he felt like he failed, failed again, and kept on failing; however, he kept on learning and gaining new experiences. He says that these failures helped him develop faster due to his own stubbornness that I wanted to at least find a place in society for myself. Eventfully, he was acknowledged as a hard worker, and he gained the confidence to seek promotions. Still, he was denied due to his disabilities sometimes.

Finally, Brett found himself promoted after arriving to a new employer under a European version of his name “Bretislav”. He explains that people always come up to him and ask him where he’s from and try to guess the country. It happens every month, and many will refuse to believe him when he says, “I’m from the southside of Milwaukee” and keep on imploring. Through adversity, he learned to love business management and leadership, where he found high sales, metrics, and employee retention. Teaching and training, servant leadership, having a mentor mindset has all led to him loving being a manager. However, he got burnt out and saw a new opportunity. He attended Moraine Park Tech College for their Health and Wellness Program to learn how to be healthy. He succeeded and became an all-A student for the first time in his life at age 29. When he made this decision, he stepped down to become a van delivery driver through his company where he makes grocery deliveries into people’s homes and fridges. Many of his customers are people with disabilities who are unable to shop in store.

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

People have always called Brett stubborn, but now he sees that it’s his self-determination. He has just graduated from Wisconsin’s Board for People with Developmental Disabilities’ Partners in Policymaking class of 2026 where he made many bonds with advocates all over Wisconsin who he’ll be working with long term towards achieving their goals. He has also been active with political parties and grassroots organizations. He had recently run for Treasurer of his local pollical party, where he received the first election ended in a tie in the party’s history. Unfortunately, he did not win the tie breaker, but it really showed his community acknowledging him.

Brett is starting to use social media as a way to project his voice and influence. “Public speaking will be my next goal, which is crazy to think of when you have a speech disability,” he says. He’s looking to expand into community education and engagement. He shares that his big goal is once he’s out of university, he’s planning to run for offices in his community and State--such as Assembly or Senate. He excitedly exclaims, “these elections I will win, as it’ll be through the community’s acknowledgement of my worth of a person!”

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

 Brett is looking forward to graduating with a Health and Wellness degree from MPTC with high honors, and he received the “Campus Impact” student award through his leadership as President of the Health and Wellness Club. He has recently accepted a full scholarship for a bachelor’s degree in Business Management and Leadership at Bellevue University. As mentioned above, he was in the 2026 class of Partner’s in Policymaking where he will forever be grateful to his fellow partners. He’s also looking forward to applying for a new leadership job position now that schedule accommodates it with school. “Most importantly, I am looking forward to my wedding with my wonderful fiancée who has supported me the most,” he says.

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

Brett encourages people to be stubborn but be accepting, be prideful but be humble, and be curious and be patient. Every day, he wakes up and says, “This is my life. This is my life. Nobody can decide what happens to me. I choose to be myself. I look forward, I look towards everything in my future, I reflect on all the good that I have done, I embrace those positives around me in the present.” He says do not segregate yourself. He shares it has been his greatest struggle. Brett’s boss once told him while he was trying to earn his first promotion, “I want to see how you handle adversity.” Brett didn’t know what he meant, so he asked what kind. His boss said, “any kind.” Upon reflection, Brett noticed that, all his life, he has been handling adversity, and that’s when his leadership grew.

 What are some of your hobbies?

Brett’s biggest passion is history. “I studied far and wide, and in a world without needing money, I would have a PHD in history,” he says. Local adventures keep his mind fresh; however, he hopes to have adventures farer one day. He likes to stay engaged in his community and is looking to start a YouTube channel based on community education and engagement. He loves meeting and talking to new people. Late at night, he likes to end the last hour of his day relaxing and accidently falling asleep on the couch as he and his fiancée watch tv, movies, or play video games.

***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.

 


Health and Human Services Secretary Robert F. Kennedy Jr. is facing significant backlash from disability rights advocates after testifying before a House committee that Medicaid programs paying family caregivers are "rife with fraud." Kennedy argued that these programs often compensate relatives for tasks they should perform for free, such as running errands or driving to appointments, and claimed the government lacks the oversight to verify actual work. Advocates and families of medically complex individuals have denounced these comments as deeply insulting, noting that many caregivers provide life-sustaining, round-the-clock medical care that saves the government money by keeping patients out of institutional settings. The controversy highlights a growing tension as states face rising healthcare costs and potential federal budget cuts while simultaneously struggling with a chronic shortage of professional home-care workers.

Read more

Posted in: default | 0 comments

This research brief from the Community Living Policy Center highlights that Medicaid Home and Community-Based Services (HCBS) significantly improve quality of life while proving more cost-effective than institutional care. Research indicates that transitioning individuals from nursing homes to the community via programs like "Money Follows the Person" reduces healthcare costs by 23-30%, as the average annual expenditure for HCBS is approximately $17,298 per person compared to $54,462 for institutional settings. Beyond financial savings, HCBS access is linked to better health outcomes, including fewer emergency room visits and hospitalizations, by addressing social determinants of health and promoting person-centered planning. However, the report notes that these benefits are currently threatened by a direct care workforce crisis and significant unmet needs, with over 600,000 individuals remaining on waiting lists for services.

Read brief

Posted in: default | 0 comments
 / 255