News
HELEN JOURNAL: Repeating the Mistakes of the Past is No Way to Reshape Modern Disability Policy
By SD Network, 2025-09-16
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.
Self-Determination Network News:
September 2025
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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. We encourage you to continue to contact your legislators and let them know how these things will impact you and your family.
Have You Taken the Survey?
The Survival Coalition of state disability organizations is conducting this survey of people with disabilities and older adults who use Medicaid, their caregivers, and their providers. The purpose of the survey is to find out how much time and effort currently goes into Medicaid eligibility, how much unpaid care already is provided, and what people are most concerned about with the more than $900-990 billion in Medicaid cuts that were signed into law July 4th, 2025. It will close this Friday, September 19th. Take survey
Last Chance to Register!
Have you registered for the 2025 Self-Determination Conference? This year's conference will be held October 20th-22nd at the Kalahari Resort in Wisconsin Dells. Self-Determination by Design: Your Life, Your Way is the theme this year. Registration closes next Thursday, September 25th. Learn more and register today!
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.
In this month's Spotlight, we're catching up with Mike. This amazing self-advocate is the founder of the Wisconsin Augmentative Alternative Communication Network. Stop by this month's Member Spotlight to get to know Mike.
Who should we shine the spotlight on next?
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).
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.
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.
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.
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.
ADMINISTRATION FOR COMMUNITY LIVING: New Resources Available for Improving Respite Care Services for Caregivers
By SD Network, 2025-08-26
- 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.
YAHOO FINANCE: New Medicare program offers much-needed relief for caregivers of dementia patients
By SD Network, 2025-08-23
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.