Self-Determination Network News:

January 2025

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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.

President Biden signed the Think Differently Database Act to create an online resource for individuals with disabilities, caregivers, and families. The Secretary of Health and Human Services (HHS) has three years from the enactment date to establish and update the website.  The website must include information about eligibility, points of contact, covered long-term services, and associated wait lists, plus information about how to contact each State’s Medicaid office.

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For Anthony Robles, coming out of retirement from wrestling to make a about his life was exciting. Robles was a wrestler in high school and college. What makes his story unique is that he was born without a leg but had no stump to attach a prosthetic leg to. With using strength of his other body parts, he was able to win state and national championships.

Read more

“You don’t know what you don’t know.” This common phrase is used for a plethora of situations when people don’t know a variety of information.  Whether it’s learning about a different culture or figuring out how to fix a car, there are millions of things that people learn.  Learning something new can bring on a whole range of emotions.  It can be fun and exciting, but it can also be difficult and frustrating.   Some information is readily available and easy to access; however, some isn’t easy to find. Oftentimes, information regarding services and benefits in the long-term care system can seem sparse and confusing. 

About two years ago, I wrote an entry about trying to figure out what benefits I was eligible for.  My financial situation had just changed because a parent had just started collecting Social Security and I became eligible for the Disabled Adult Child (DAC) benefit. As the title suggests, it’s an income benefit that adults with disabilities can receive when a parent starts receiving Social Security.  I’m not going to get into all the specifics of it because honestly, I don’t know them, but it was challenging to figure out because information wasn’t readily available.

Two years later, my parents and I found ourselves in a similar situation of trying to figure things out. This time it was because I became eligible for Medicare starting in January because I have been receiving the DAC benefit for two years (again, I don’t understand the reasoning behind this but that’s what we were told).

Admittedly, I know very little about insurance things, but, in October and November, commercials started running about advantage plans for Medicare.  We started hearing about dual eligible special needs plans that were being advertised.  We knew Medicaid would become secondary, but we had no idea if I needed an advantage plan.  In late November, my parents started making calls to their insurance guy.  They explained my situation and, very fortunately for us, the guy was super nice. He was honest with us and said he didn’t know.  He suggested that we contact the ADRC.  This was such a class act because he could have easily just had us sign up for an advantage plan and take the commission on it.  If he would’ve done that, it would’ve been a disaster.  My mom has been in touch with the benefit specialist at the ADRC and she has been super helpful. Due to needing to see all the specialists and getting infusions for my baclofen pump, I’m best to just have Medicare and Medicaid with no advantage plan.  Whatever Medicare doesn’t pick up, Medicaid will. I know others who have disabilities have to worry about MAPP premiums based on income, but I don’t have those circumstances—I’ll probably always be eligible for both benefits without premiums just due to my situation.

With Medicare now being primary, I needed to be enrolled in a drug plan for my prescriptions. Again, we had no idea how any of this worked.  The lady from the ADRC told us to create an account online and I’d automatically enrolled in a drug plan.  I created an account, but I wasn’t enrolled in a plan until a few days after the new year. That took a few phone calls to figure out that it takes a few weeks for that information to appear in my account. In fact, just this week, I finally received information about the drug plan in the mail this week. For someone who relies on multiple prescriptions, it was very nerve wracking not knowing how my medications would be paid for. 

Then, when my DAC deposit came in for January, it was less than what it had been.  I logged into my Social Security account and realized that money had been taken out to pay for my Medicare premium. That didn’t make sense to my parents and I because I had been on Medicaid for years and I’ve never had to pay for anything.  It didn’t make sense that I would have to start paying now.  I tried reaching out to some of my friends who have disabilities, but everyone’s situation seems to be a little different. My mom tried calling Medicare (and was on hold for an hour) only to be told that we needed to call Social Security (which was another hour wait).  They told us that we needed to call Medicaid. Instead of spending an hour waiting on the phone, my mom called the benefits specialist to see if she knew. Luckily, she did. She told us about another program that I qualify for and will be automatically enrolled in. It turns out that Medicaid will cover my Medicare premium in my circumstances. The system is just backlogged and, once it catches up, I’ll be getting reimbursed. Again, I qualify for this specific program based on my personal income. Everyone has a slightly different situation.

It’s frustrating for me because I’m not able to call these places myself. Although more and more financial and insurance places are creating online options to communicate with people, many government agencies still don’t have email or online portals for people to ask specific questions. Due to this, I’ve had to name my parents as authorized representatives so that they can talk to these places on my behalf. While I’m thankful that they’re willing to do this, it’d be really nice to be able to do some of these things myself—especially knowing that the technology is available to make it happen!

I don’t know how people can be expected to figure all of this insurance stuff out on their own when there’s no communication as to what is supposed to happen when.  As I’ve said in previous entries, I feel like my parents and I have lots of connections and are pretty “in the loop“ about a lot of disability related things, but this isn’t one of them.  We feel like we missed an important bulletin or something with this, but, in reality as far as we can tell, we haven’t. We’re trying our best to figure this out and make sure that I’m in the right programs to get what I need.  The information is available if people know where to go for it, but it isn’t easily accessible for the average person.   

Circling back around, the saying is true: You don’t know what you don’t know. With some things, people may be okay with not knowing everything; however, with other things, people have no choice but to go to extraordinary measures to obtain the information they need to figure things out. It’s said that continuing to learn new things is good for our minds; I guess that’s part of life!

***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.

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. A new study published in the journal JAMA Health Forum, researchers looked at what happened in New Hampshire, which passed legislation in 2015 to do away with subminimum wage employment, and Maryland, which approved a phaseout of the program in 2016.

Read more

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. A recent survey finds that 90% of providers serving people with intellectual and developmental disabilities have faced moderate or severe staffing shortages in the last year. 

Read more

Meet Rose. This photography loving self-advocate is taking the Partners in Policymaking class right now and is eager to advocate for Medicaid expansion. She’s hoping to connect with others through the Network. We’re so fortunate to have her on the Self-Determination Network!

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

Rose shares that she wouldn’t be surprised if she was misdiagnosed with having an intellectual disability at a younger age, but she was diagnosed with ADHD when she was 13 and Asperger’s when she was almost 15. She works at Water Performance Products in Mukwonago, but what keeps her busy is going to the gym, taking care of her pets, streaming movies and TV on Chromecast, playing computer games, and running and biking outside when it’s warmer.

How are you involved with self-determination? Why did you join the SD Network? .

Rose is currently taking the Partners in Policymaking class. She is advocating for Medicaid expansion, but knows that it’s going to be a really hard battle due to the incoming administration.

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

Rose was really excited to join the Network because it’s a way for her to connect with others in the disability community virtually. She tells us that sometimes interacting with people with disabilities scares her, so the network gives her the opportunity to connect virtually.

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

Rose encourages self-advocates to take the Partners in Policymaking class. “If people with disabilities want to make a difference for the better of all types of disabilities, then, yes, absolutely take this course,” she says.

What are some of your hobbies?

In her spare time, Rose enjoys doing photography, playing computer games, and scrapbooking.

***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.