News

Getty Images cements its position as the world’s leading image library. Recently, it committed to focus on ensuring that its images depict disability authentically and with appropriate diversity. Previously, when it came to disability, images were often flawed. Too often, portrayals of disability is through a medical or caregiver lens. Getty Images announced earlier this week that it is teaming up with U.S. telecommunications giant Verizon and the National Disability Leadership Alliance to offer financial support to assist photographers in reimaging the disability community. Instead of care settings, the lens is to shift to the workplace and professional life to convey the idea that life with a disability can be rich, diverse and full of innovation and achievement.

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As the saying goes, it’s okay to be different. Whether it’s referencing a hairstyle, an ethnicity, a sexual orientation, or one of the millions of different characteristics people have, the notion of being different has been supported in this country for many years. A slew of legislative laws have been passed to protect and support people who are considered different from the norm. A few months ago, I wrote a journal entry about going against the norm. I talked about how it was okay to be different. While in some aspects, people choose to be different, in many aspects, people don’t have a choice. Disability is one of those notions that people can’t control.

Diversity. Equity. Inclusion. Those three words have made almost every news headline across the country the last few weeks. The new administration has made it blatantly clear that DEI will not be part of their agenda. In fact, they have already made sweeping changes. Within a day of the switch several webpages with vital information were taken down. Within days, a freeze on federal programs caused mass confusion. It was later blocked by a judge, but the anxiety for people who are in minorities is palpable right now. Furthermore, after a tragic plane crash, the President blamed people with disabilities without any proof that anyone with a disability had anything to do with it. That caused more uproar in the already on edge disability community.

While I am not going to share all of my thoughts on this, I will say that I think it brings up some deep questions as a country. The first and biggest being is it really okay to have a difference from the norm? Right now, in my opinion, the answer to this question is up in the air. Of course, everyone is going to have opinions about everything, and the idea of democracy is that everyone works together to make this country what it is. In order for that to happen, people have to have an open mind and be receptive to the idea that people have varying needs.

The second question is whether or not we have leaders in government who accept and support people who don’t fit the cookie cutter norm? In my opinion, the answer is some. There are numerous leaders in government who are supportive of the diverse needs of people in this country; however, there are some who are not. It makes it very tough for a country to run smoothly when you have leaders who don’t believe in diversity, equity, and inclusion.

 As a person with a significant disability who relies on federal programs to literally survive, it’s an unbelievably scary time. Hearing that Medicaid could have significant cuts or potentially be defunded is unfathomable. Quite honestly, many people like myself can’t even imagine receiving less support than we do now and still lead the productive lives we have worked so hard to achieve. I don’t even want to think about what my life would be like without Medicaid. The truth is that I’d likely be in an institution.

To have leaders of the country not think that any person with a difference isn’t worthy of leading a successful life is infuriating. In my opinion, people who are in charge of this country should believe that every single person in this country is capable of leading a successful life. Of all people, people in leadership roles shouldn’t judge anyone—especially publicly.

While I can’t speak for the disability community as a whole, I will say that, personally, what has transpired the last three weeks in this country has just refueled my desire to advocate. I feel like I have no choice but to. The quality of my life is on the line!

***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.

This year marks the 35th anniversary of the American with Disabilities Act (ADA), a clear and comprehensive prohibition of discrimination toward anyone on the basis of disability. Yet within that act lies a troubling loophole that currently affects hundreds of thousands of workers with disabilities in the US. It’s called “subminimum wage.”

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In 2025, many issues are at play that could affect Medicaid coverage, financing, and access to care. While Medicaid was not discussed much on the campaign trail, there are expectations that big changes will likely be proposed through executive actions. Areas to watch with Medicaid implications include state budgets and long-term care workforce challenges.

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The workers who care for people with disabilities are underpaid, overwhelmed, and increasingly leaving the field. Advocates say action is desperately needed to stem the tide.

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As we near the turnover of administrations, Health Affairs Forefront offers a series of articles from leaders at the Centers for Medicare and Medicaid Services providing their thoughts on the major achievements of the last four years, remaining challenges, and lessons learned.

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Wisconsin Department of Health Services (DHS) introduces free online training for direct care professionals, including materials in English, Spanish, and Hmong.

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After years of advocacy from the disabled community, the Department of Labor is proposing a rule that would end the issuance of 14(c) certificates, which enable businesses to pay subminimum wages to disabled workers.

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Self-Determination Network News:

January 2025

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

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 January, we're shining the spotlight on Rose.  This photography loving self-advocate is taking the Partners in Policymaking class right now and is eager to advocate for Medicaid expansion. Stop by this month's Member Spotlight to get to know Rose.    

Who should we shine the spotlight on next?

Stacy’s Journal

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

• Switzer Research Fellowship: The purpose of the Switzer Research Fellowships Program is to build research capacity by providing support to highly qualified individuals, including individuals with disabilities, to conduct research on rehabilitation, independent living, and other experiences and outcomes of people with disabilities. Applications due February 3rd.
• Disability Data Collection Practices: Read about some promising practices states can use to collect disability data to improve health equity.
• Self-Direction in Medicaid: This study’s aim was to examine how states across the United States implemented self-direction in their Medicaid home and community‐based services waiver programs for people with intellectual and developmental disabilities in fiscal year 2021.  Learn about some of the interesting statistics that it revealed.
• Workforce Challenges Continue: A new survey highlighted the challenges facing America’s direct support workforce, revealing a care system in crisis due to ongoing recruitment and retention issues.  Find out why this is.
• New Air Travel Rules: New rules aimed to ease air travel for people with disabilities will go into effect on January 18th. Learn what they are.
• Mom On a Mission: Going to the grocery store is not a big ordeal for most people, but for adults with disabilities and their caregivers, it can be challenging. Read about one Wisconsin mom's mission to get adult changing stations in more common places.
• Universal Design Funding Opportunity: The National Institute on Disability, Independent Living, and Rehabilitation Research announced a new funding opportunity on universal design. Applications are due March 6th. Learn more about this opportunity.
• Disability Providers Fear More Cuts: Disability service providers across the country are struggling to maintain their services, with many reporting that they are turning away new referrals and discontinuing programs and they’re concerned that it could get worse Learn why.
• Ending Subminimum Wage: As federal officials consider ending a program that allows employers to pay people with disabilities less than minimum wage, a new study suggests that doing so has little downside.  Learn the reasoning.
• Input Needed: The Department of Health and Human Services is seeking input on the impact of ageism in health care. Comments due March 15th.
• Inspiring Wrestler: For Anthony Robles, coming out of retirement from wrestling to make a about his life was exciting. Read about one Wisconsin wrestler's unique story.
• Think Differently Database Act: President Biden signed the Think Differently Database Act to create an online resource for individuals with disabilities, caregivers, and families. Find out what this law requires.

Upcoming Events 

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

• Federal Medicaid Updates: What's going on and how to tell your story to policymakers: January 21st, 12p.m. to 1:30p.m., Virtual
• Webinar: Highlights from the Fiscal Year 2024 Government-wide Section 508 Assessment: January 21st, 12p.m. to 1:30p.m., Virtual
• Federal Medicaid Updates: What's going on and how to tell your story to policymakers: January 23rd, 3p.m. to 4:30p.m., Virtual
• Webinar: Innovation in the Direct Care Workforce: Unlocking Success Through Peer Learning: January 29th, 1p.m. to 2p.m., Virtual
• Webinar: Accessibility and Air Travel: February 6th, 1:30p.m. to 3p.m., Virtual
• Disability Advocacy Day 2025: March 12th, Monona Terrace and State Capitol, Madison WI
• National Symposium on Quality Employment 2025: May 20th-22nd, Memorial Union, Madison 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.