News

Former Assistant Secretary of Labor Neil Romano and disability policy expert Sara Weir Rogers argue the U.S. disability system traps people in poverty through contradictory programs and benefit cliffs that punish work. They note 93% of people with disabilities want to work but face losing benefits for earning "too much," leaving $25 billion in economic activity untapped. The authors call for bold reorganization to empower rather than penalize disabled Americans, citing decades of GAO warnings about uncoordinated, ineffective federal programs.

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Self-Determination Network News:

September 2025

Connect | Share |Learn | http://sdnetworkwi.org

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

• New Cafe: A new cafe in one Wisconsin city is not only serving up delicious coffee and treats, it's also providing jobs for people with all abilities. Learn where this new cafe is.
• Compounded Impact: President Trump signed an executive order that would make it easier for states to remove unhoused people from streets.  Find out why advocates are concerned about the compounded impacts of all these changes for people with disabilities.
• Institutionalization Fears: Advocates are concerned after a White House order calls for greater reliance on institutionalization threatens decades of precedent on disability rights.  Read about why advocates are concerned.
• Conditions Added: The Social Security Administration has recently added 13 new conditions to its Compassionate Allowances list, which will enable more people to access disability benefits more quickly.  Learn what conditions were added.
• Hidden Costs: With the passage of the big Republican tax and spending bill, the federal government is poised to reduce support for Medicaid and the insurance marketplaces established by the Affordable Care Act.  Read about the hidden cuts that are in this bill.
• New Caregiving Report: A new report reveals that 63 million people in this country now provides unpaid caregiving, with many facing financial and health challenges. Find out what else the report said.
• Medicaid Policy Timeline: The National Association of Medicaid Directors released a timeline outlining key Medicaid policy changes in the One Big Beautiful Bill Act that require immediate state planning. Take a look.
• Listen: This summer marked the 60th anniversary of Medicare and Medicaid, the twin government programs that have shaped the health care system into what it is today. Listen to this podcast to learn about the history, significance, and future of these programs.
• Two California Sisters Rely on Medicaid: Two sisters in California rely on  In-Home Supportive Services- a self-direction program that allows them to hire and manage their own caregivers. Learn about why these sisters now fear for their independence.
• Possible End to Mail-in Voting: President Trump announced plans for an executive order to eliminate mail-in voting. Find out why people with disabilities are worried.
• New Program: Medicare's new GUIDE program pays up to $2,500 annually for respite care for dementia patients, marking the first time Medicare has supported unpaid family caregivers. Read more about this program.
• Caregiver Respite Resources: The National Respite Network has released new caregiver respite resources. Check it out.
• Public Health Webpages Restored: After many went dark to comply with an executive order on DEI, many public health webpages have been restored. Learn about why this happened.
• Disability Benefits Cut: Hundreds of thousands of poor Americans are poised to get their disability benefits cut, as the Trump administration moves to reverse a Biden-era change. Find out what benefits are in jeopardy. 

Upcoming Events 

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

• A Journey Through Global Accessibility Laws: September 16th, 12p.m. to 1:30p.m., Virtual
• Webinar: Smart Home Technology Solutions for Individuals With Accessibility Needs: September 16th, 12:30p.m. to 1:30p.m., Virtual 
• Webinar: ADA Audio: Sexual Education, Disability, and the Law: Understanding the ADA’s Role: September 23rd, 1:30p.m. to 3p.m., Virtual 
• Webinar: Don’t Panic! How to Navigate the 2010 ADA Standards and HUD’s Deeming Notice Part 1 of 2: October 2nd, 1:30p.m. to 3p.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.'

Hundreds of thousands of poor Americans are poised to get their disability benefits cut, as the Trump administration moves to reverse a Biden-era change. It would hurt low-income and disabled Americans at a time when inflation is driving up the cost of food and shelter; and further cuts to Medicaid and food benefits are on tap. 

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A steering wheel cover. An ice maker for your refrigerator. Gourmet coffee. That special mouse pad with your favorite team on it. There are many different types of things that adults invest in to make life easier and more enjoyable. Whatever it may be, adults often have various types of expenses.  While what is considered a necessity varies from person-to-person, there are several things in life that are optional. Optional things may be considered “wants” by some people; while others consider them needs. As we grow up, we learn the basics of wants and needs. Generally, needs are things that you can’t live without, and wants are things that you can function without out but you desire to make life easier or better.

When it comes to medical equipment and supplies, most people have some sort of health insurance. Of course, coverage of what’s paid for varies widely depending on individual circumstances, but often a lot of the “necessary” medical equipment and supplies are at least partially covered by insurance. Like many people who have significant disabilities or health conditions, I am on Medicaid and Medicare. As I’ve explained in previous entries, I’ve received a lot of equipment, supplies, and services through Medicaid over the years. Everything from electronic wheelchairs, to shower chairs, to cares and medical services…the list is truly endless of what Medicaid has provided me. Simply put, I rely on these goods and services to live.

Recently, my IRIS Self-Directed Personal Care nurse came to do her quarterly visit and I asked her if Medicaid would pay for more than two boxes of gloves per month. With having a caregiver with me 16 hours a day now, I’m going through a lot more gloves. She explained that Medicaid would buy more gloves, but it would come out of my SDPC budget which would mean either less hours or a lower wage for my workers. Obviously, I’m not going to do that because I need all of my hours, and I’m not going cut my workers’ wages just to get more gloves—that’s ridiculous! My nurse told me that the two boxes Medicaid provides really technically aren’t for my workers; they’re for “personal use” meaning for friends and family to use. When I was with care agencies, they usually provided gloves for their employees, but, in the IRIS program, participants are expected to provide the gloves for their workers. While I’m sure you could put them in your regular IRIS budget, not many people would sacrifice another service just to get gloves for their employees. On the other hand, at least for me, not only do I want my workers to wear gloves while doing certain things, I want them to be able to wear gloves whenever they want while working with me. It’s just common courtesy of both parties.  My nurse also said that most people buy gloves in bulk on Amazon, so that’s what I’ll do. To me, that’s a flaw in the system, but it’s one not worth fighting for—there are far more important issues to be advocating for!

Another example of something that isn’t covered by most insurances is a power Hoyer lift. Several years ago, I wrote about getting several pieces of medical equipment to make things easier and safer for my caregivers. One of those pieces was a Hoyer lift.  It was my very first time using one, so it was a learning curve. Unless there are very specific circumstances, Medicaid will only pay for manual Hoyer lift. While manual Hoyer lifts do the job, it quickly became very apparent that a power lift would be so much easier not only for me, but especially for my workers. In today’s world, where caregivers are so hard to come by, making things as easy as possible is imperative. So, I used my personal funds to purchase a power lift. While I’m trying not to reveal too much about personal finances, I do have an ABLE account which allows me to save money that can be used for disability related expenses without losing my benefits. I bought a power lift and sling using that account. It makes things so much easier. The manual Hoyer lift is at my parents’ house and we use it when it when I’m there.

Manual wheelchairs are another example. For obvious reasons, if you have an electric wheelchair paid for by insurance, they usually don’t fund another manual wheelchair. Although, I don’t use them much anymore, I’ve bought a few manual wheelchairs out-of-pocket. When I was younger, I used them a lot more, but my body has changed and it’s really not comfortable to be a manual chair for an extended period of time anymore; however, I need one to be able to visit relatives’ homes.

There are several other disability-related things that my family and I have paid out-of-pocket for over the years. Everything from wheelchair accessible vans to clothing protectors, there have been a lot of things we’ve paid for to make life better for me. While, I can’t lie—I wish more than anything I could spend my money on things like gas for a vehicle or new sports equipment for my children—I’m grateful that I have a great family and I have at least some ability to purchase those extra but essential things that help me live the best life possible!

***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

The Trump administration agreed to restore scores of health agency webpages and datasets that went dark to comply with executive orders on diversity, equity and inclusion and gender identity, under a court settlement recently  announced. 

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In September’s Member Spotlight, we’re catching up with Mike. This amazing self-advocate is the founder of the Wisconsin AAC Network. Recently, he has become involved in government policy work, and he’s excited to see what he can do for people with disabilities. We’re so glad Mike continues to be a part of the Network.

We last shined the spotlight on you in 2017. Can you briefly reintroduce yourself and share a little bit of your story?

Mike lives in Appleton. He is the founder of the Wisconsin AAC Network. The network mission is to bring Wisconsin state holders for Augmentative Alternative Communication together to have and one voice and to share the knowledge that we have. People can go on their website at www.wisconsinaacnetwork.org to sign up and follow them on Facebook. They publish a quarterly newsletter with the happenings in the assistive technology community and Wisconsin events.

What kinds of advocacy projects are you involved with these days?

Mike tells us that he has been involved in advocating for new government policies. He is interested in anything to do with education and technology. He’s so excited to see what his involvement will mean for people with disabilities.  

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

Mike is excited to see what the US Secretary of the Education will do for the community. “We need an outsider, and a person who is willing to learn from families, adults who have been in the system themselves, and great school professionals. I think she is the perfect person for the job,” he said.

What resource can you share with us (website or article)? Why is it useful?

Mike’s favorite website right now is the AT3 Center website which is the government website for the state assistive technology programs. He explains that there is an email list that people can subscribe to which provides receive updates on each program. “I hope you enjoy it as much as I do,” he says.

What would be your dream vacation?

Mike would love to visit Japan and Germany someday.

***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.

• Financing Strategies Matrix: Strategies to sustain respite care and caregiver supports for respite programs, state coalitions, and provider agencies
• State Summaries of Lifespan Respite Grant Activities and Outcomes: Detailed information on the Lifespan Respite Care Program grantees, their activities, and accomplishments
• Learning Collaborative Webinars and Materials: Information and resources from five topical collaboratives, including sustainability planning

Former Administration for Community Living director Alison Barkoff discusses how disability and aging advocacy communities have strengthened collaboration, particularly around home and community-based services. She notes that over 50% of people 65+ have disabilities and highlights successful joint advocacy against Medicaid cuts and Affordable Care Act repeal attempts. 

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Medicare's new GUIDE program pays up to $2,500 annually for respite care for dementia patients, marking the first time Medicare has supported unpaid family caregivers. Available in 45 states with 330 participating providers, the program covers in-home caregivers, overnight care, or adult day care to give family caregivers breaks. Two-thirds of dementia caregivers are women, and the program aims to help patients stay home longer while reducing Medicare costs through fewer emergency visits.

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President Trump announced plans for an executive order to eliminate mail-in voting after consulting with Disability advocates warn this would disproportionately disenfranchise disabled and aging voters who rely on absentee ballots due to inaccessible polling places, transportation barriers, and health conditions. The proposal would also impact full-time caregivers who may not be able to find alternative care arrangements on election day.

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