News

Self-Determination Network News:

August 2025

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

• Proposed Home Care Overtime Policy: The Department of Labor issued a proposed rule to rescind restrictive provisions that increased costs and administrative burdens in home care. Learn what this rule would change.
• Consumer Direction Podcast: Consumer direction, which allows people to hire people they choose to be caregivers through Medicaid, remains largely unused. Listen to this podcast to learn how consumer direction helps people with disabilities with disabilities while keeping families together financially.
• Program for First Responders: The Middleton Police Department has introduced a new program aimed at helping first responders better respond to situations with people with invisible disabilities. Watch this news story to learn about what this program does.
• The Older Americans Act: The Older Americans Act turned 60 in July. Read what this Act has done.
• Theater Company Focuses on Disability Theater: A theater company is the first in the area the area which is made up of a cast and crew of actors and actress who have disabilities. Learn more about this unique theater.
• Wisconsin Governor and Health Secretary Criticize Bill: Governor Evers and Health Secretary Johnson criticize the One Big Beautiful Bill. Find out why.
• Cross State Trek to Raise Awareness: A man from Neenah recently made the 100+ mile trip to the Capitol in Madison using his power wheelchair to raise awareness for better wages for home care workers. Learn about his journey.
• Watch: Medicaid is 60 years old and it covers one in five people in this country. Watch this video to learn how it got so big and how the recent bill may change it.
• Subminimum Wage: The Trump administration withdrew a rule that would have federally ended subminimum wage for disabled workers, allowing some companies certificates to continue paying disabled employees as little as 25 cents an hour. Read about what this means for states. 
• Amtrak Accessibility Concerns: A new report finds that Amtrak is losing a significant amount of customers because it hasn't done a good job of responding to accessibility complaints. Find out what is being done to address these concerns.
• Medicaid Turns From Lifeline to Question Mark: For a Wisconsin woman who has chronic illness, Medicaid has become a lifeline. Read about how it has now become a question mark due to the recent legislation.
• Mental Health Concerns in Rural Areas: Medicaid is the largest payer for mental health services, and, in rural areas, people are disproportionately rely on the public insurance program. Learn what the fears are with Medicaid on the chopping block.
• National Award Winner: A student at UW-Eau Claire received a national disability advocacy award for her dedication to creating a safe and inclusive campus environment. Read about what she has done.
• Caregiving Report: A new report reveals that the caregiving landscape now includes 63 million people. Learn about what this surge means and what the priorities are.
• Eliminating Workforce Initiatives: The Centers for Medicaid and Medicare Services recently announced that it will no longer fund Medicaid workforce initiatives. Find out what these included.
• Celebrating 35 Years of the ADA: On July 26th, the Americans with Disabilities Act turned 35. Learn about what this law has accomplished and what still needs to be done.
• Families Supporting Families: The Board for People with Developmental Disabilities and the Department of Public Instruction want to strengthen their partnerships with Wisconsin’s communities of color and communities who speak Spanish and Hmong to better support families who have school-aged children with intellectual or developmental disabilities. They are offering two grant options to bring bring families who have school-aged children with intellectual or developmental disabilities together. Learn more and apply today.
• Changes Coming to Social Security: The Social Security Administration announced some big changes coming in mid-August. Read about the new multi-factor authorization process to talk with an agent over the phone.
• Impact on Family Caregivers: Many immigrants who had work permits, for jobs including nursing and caregiving, have had temporary legal status revoked. Find out why this could impact family caregivers.
• Disability Activist on Quarter: A famous disability activist will soon appear on US quarters. Read about this activist.

Upcoming Events 

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

• Webinar: Service First – Empowering Front-Line Staff: August 14th, 1p.m. to 2:30p.m., Virtual
• Access Technology Class: Which Smart Glasses are Right for Me?: August 14th, 4p.m. to 5p.m., Virtual
• Self Determination Conference 2025: October 20th-22nd, 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.'

Family. Health. Career. Friends. Faith. Finances. What do these things have in common? They’re all common priorities for most adults. There are many different types of priorities that people have. Often, circumstances dictate what people prioritize in their lives. Sometimes, individuals have the ability to choose what their priorities are. We don’t even think about it, but we prioritize different things every day. While some priorities never change for people, many change over time. Many times, people are in disagreement about what priorities should be, but what people choose to or not to prioritize is ultimately the decision of the individual.  

While most people my age have families and kids which obviously are their priority, I find myself having totally different priorities. Recently, I was in a meeting for one of the many councils I’m on, and I told them that I wouldn’t be renewing my appointment when my term ends next summer. This particular council does a lot of great work around various disability issues in the state. This council has a lot subcommittee meetings and most of the members are deeply dedicated and spend endless hours working on various council projects. While I full-heartedly believe in everything they’re doing and would love be able to help more, I just can’t. Partly because of circumstances and partly due to personal preferences, my priorities are very different from many people who are on the council.

Like most people, my priorities have shifted over the years. After graduating college, my two main priorities were to move into an apartment and get a job. Why were those such major priorities for me? Likely because it was just the “normal” thing to do after graduation. A few years back, I wrote a journal entry about expectations. As I explained in that entry, growing up, I had the same expectations as my peers, so, after college, the next natural things for me to do were to get an apartment and find a job. Obviously, both of those milestones took some extra time and effort to make happen, but, with support, I was able to accomplished both of those priorities.

As I got more involved in disability advocacy as a whole, I quickly realized that I was going to have to set limits and prioritize what I wanted to be involved with. For the first few years, I tried to be involved in everything I could. I said yes to every opportunity that came available. I was living on cloud nine being involved with so many things. I felt like I was making a difference and contributing to society; I absolutely loved it!

A few years into it, I began having more health and care problems. As hard as I tried to do everything, I couldn’t. I had no choice but to prioritize my health and care issues because if I didn’t, I wouldn’t be able to function enough to do any of the advocacy things that I love. Thankfully, in the disability advocacy field, when health and care issues arise, people tend to understand why you might not be able to participate as much—often the issues that sometimes prevent us from participating are the things that we advocate for. It’s a pretty unique happenstance.

As the years have gone by, I’ve found myself continuing to try to find a good balance. I’ve learned my passion in the disability advocacy field is around long-term care and supports. While things like transportation, housing, and employment are vital to those with disabilities, for many people, including myself, the long-term care system is really what determines our life as we know it. I realize that housing, transportation, etc… are usually seen as part of long-term care. While those things are definitely important, when I say long-term care, I mean the actual hands-on care that people need to physically survive. This is my priority of advocacy for a selfish reason—it’s the area that affects me the most.  It’s something I deal with and will continue to deal with every single day. A big part of it is the ongoing caregiver crisis, but it goes beyond that. The “system” is not setup for people with significant disabilities to live life in the community like everyone else does. Thanks to years of advocacy, there’s no doubt that it has significantly improved, but there’s a long way to go. This will likely be my advocacy priority until the day I die. It’s something that is near and dear to my heart because I live and breathe it every day.

While I’d love to be involved in more councils and projects, I have lots of other things that take priority in my life. Things such as hiring and scheduling caregivers and managing the ins and outs of life take time. Albeit, very part-time, but I also work. To me, having a job is an accomplishment and it’s one that I’m extremely proud of. I never want to use this as an excuse, but it’s a fact that has to be considered when I talk about priorities—people who have cerebral palsy use up to three times as much energy and our bodies age faster than the average person. When you take that into consideration, it makes you think about life a little differently.

In recent years, I’ve really taken a step back in what I volunteer for. Although, it’s extremely important, there’s more to life than advocacy and work. As we age, we realize we need to take time to do what we enjoy and spend time with those close to us. While advocacy will always be a priority in my life, there are several other things that are above it.

Everyone has different priorities and they change as we go through this journey called life. I encourage everyone to take a moment to think about your personal priorities. Are you satisfied with how you’re prioritizing the things that are most important to you? If not, take a few minutes to think about how you can make changes in your life to prioritize what’s most important to you. Remember, you only get one life to live!

***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

A prominent disability justice activist, Stacey Park Milbern, will soon appear on quarters issued by the U.S. Mint as part of a special program honoring notable American women.

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Many immigrants from countries like Venezuela and Haiti who had work permits for jobs, including nursing, have now had their temporary legal status revoked by the Trump administration. If more families lose that formal support, they may have to take on the role of caregivers directly.

Read more

The Social Security Administration announced some big changes coming in mid-August. The re will be a new multi-factor authorization process  to talk with an agent over the phone. If people want to contact the Social Security office over the phone, they will have to first go to the office in-person to get a PIN. This will be problematic for older adults and people with disabilities--especially in rural areas.

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The Wisconsin Department of Transportation (WisDOT) has published the 2025 Americans with Disabilities Act (ADA) Transition Plan. There is a public comment period open through Sunday, August 31 (approximately midnight, 11:59 a.m.). Your feedback is very important, and we hope you’ll take the time to participate in this opportunity. Visit http://www.wisconsindot.gov/ada to find the plan, along with an overview video presentation and options to comment using the web, email or standard U.S. Mail.

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The 2025 edition reveals a rapidly evolving caregiving landscape that now includes 63 million Americans, a nearly 50% increase since 2015. This surge underscores the growing demand for family caregivers who provide essential support to those with chronic, disabling, or serious health conditions. The report outlines key policy areas, such as financial support, workplace protections, and access to services, offering a roadmap to build a more supportive system for family caregivers, who form the backbone of long-term care in the US. For the first time, the 2025 survey includes family caregivers who receive payment for care they provide to an adult family member or friend under Medicaid HCBS self-direction waivers, Veterans Affairs, or other state programs.

Read more