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A baby taking their first steps. A toddler mastering potty training. A child’s first day of daycare or preschool. A teenager driving down the driveway for the first time. A young adult going off to college. There are millions of examples of how people experience independence. Finding freedom is a vital part of growing up and becoming an adult. Most teenagers crave the foreseeable independence. Often, seasoned adults tell kids that they really don’t want to grow up, but, until reality hits, younger people don’t understand why. When you’re young, the concept of being independent seems so desirable. The idea of being able to do things yourself is an exhilarating feeling.

As I’ve discussed in other entries, almost 23 years ago when I first started at UW-Whitewater, was when I first experienced real independence. I moved in a few days before the other freshmen. My mom and sister moved me in, and, when they left, I walked them to the door. After we said our goodbyes, I turned to go back to my room, but I accidentally turned the wrong direction and went to the “boys wing.” My mom and sister saw this and laughed which definitely helped during an emotional time. Why am I sharing this, you ask? That was my first ah-ha moment of independence. In college, I learned how to figure things out on my own. Everything from deciding what I want to eat, to figuring out how to get help with my school work, to navigating the whole care situation, I had no choice but to figure things out by myself. Looking back, I don’t know how I ever made that transition. I think the fact that I had absolutely no idea of what I was getting into and “going to college” was just the next normal step among my peers made me not think twice about it. Simply put, I learned how to be independent during my time in Whitewater.  To this day, I tell people that it was the best decision I’ve ever made.

I broke down and cried as we drove out of UW-Whitewater after graduation. I knew that I wanted to live “independently,” but, at that point, we had no idea what that would like. Eventually, I was able to move into an apartment in Oshkosh and have caregivers support me with my daily needs. For over nearly 14 years, I had what I call “split shifts” People would come assist me for an hour or two a few times throughout the day. I was used to that because that was how it was in college. It worked well for a few years, but it became incredibly difficult to find caregivers for short shifts. After moving back into my apartment a few months after COVID first hit, we moved to having two shifts per day—a two hour one in the morning and then a seven hour one in the evening. I was alone for seven hours during the day. While initially it may have been a little easier to recruit people to work, as we moved further along, it became apparent that it didn’t make much difference—it was challenging finding people regardless of the shifts. When I had a short shift and long shift, I tried to feed myself finger foods for lunch. I also wasn’t able to use the restroom at all during the day. While it worked OK for a few years, it wasn’t healthy or safe.

About a year and a half ago, due to various reasons, I brought up the idea of 24-hour care to my rehabilitation doctor. Not to judge, but I know others who have seemingly fewer physical needs who have 24-hour care. My doctor fully agreed that I would indeed benefit from more care hours. He wrote a letter in support of 24-hour care. I got a letter from my general physician as well.

As I wrote about in previous entries, the thought was to let an agency take over. Unfortunately, we waited over a year only to find out that the one and only agency that could meet my needs couldn’t staff me after all. The agency had said that they would be able to do 16 hours a day to start, so that’s what we did all the budget amendment paperwork for. When the agency fell through, we decided to still go for 16 hours a day.  I’ve heard that 24-hour care is getting more challenging to get approved, and, for the time being, I’m usually OK by myself overnight.

It took months, but I finally have a pretty full schedule of workers. Initially, having someone with me all the time was daunting. I seriously questioned what I was doing. What was I doing giving up my independence? Right or wrong, being independent has always been a major source of pride for me. With the severity of my limitations, I’ve been told many times that it’s pretty remarkable that I have been as independent as I am. What was I doing giving that up? As it turns out, I’m realizing that I’m not giving up independence. I’m actually gaining independence because I have people supporting me during the day which allows me to be able to do things. While I haven’t ventured very far yet (because we are just getting started with new people), I’m looking forward to actually going places during the day. I’ll be able to meet friends, go shopping, etc… I already have seen positive effects with being able to eat an actual lunch and use the restroom whenever I need to. For most people gaining weight isn’t a good thing, but, for me, going up a pants size is a great thing. I’m also finally able to hydrate properly which will be so helpful to my overall health.  It’s also so nice to have someone here when things drop or something happens to my wheelchair or another piece of equipment. I used to have to be so careful when I was alone during the day because if I accidentally hit something or something happened, I’d have to wait hours until the next person came. As minor as it sounds, if the straw would fall out of my water bottle, so I wouldn’t be able to get a drink sometimes for many hours. I can’t tell you how nice it is not to have to worry about things like that.

Until recently, I was skeptical of people who had a caregiver with them all the time. Why do they need that when they have more ability than I do? Do they want to be as independent as possible? Now, I get it. As people getting older, life isn’t about doing as much as you can by yourself. Independence isn’t about showing off. It’s about being able to create a safe and healthy lifestyle you choose!

***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.

For Garrett Murray of Mequon, announcing sporting events for Homestead High School has become a career. While hard to tell behind the microphone, Murray battles Nonverbal Learning Disorder. Garrett has been a PA announcer at Homestead High School for nearly a decade, a career he pursued on his own back in middle school.

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Meet Lauren. This resilient author found her happy place at camp when she was a kid. She graduated from college, worked in nonprofit marketing for years, and now is a camp coordinator for a weeklong summer camp and weekend camps for adults with neuromuscular diseases. She and her friends are hosting a wheelchair accessible wellness and nature camp coming up in April. We are so fortunate to have her as a member of the Network.

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

Lauren lives with spinal muscular atrophy type II and has been a power wheelchair user since the age of four. An only child of two incredibly supportive parents, she grew up in New Lisbon, a small, rural town in central Wisconsin. She explains that she had a fairly typical childhood, aside from relatively frequent hospital stays and a few major surgeries. “The highlight of my year was attending MDA Summer Camp where I spent a week with kids like me and was introduced to mentors with similar disabilities who attended college and inspired me to do the same,” she tells us. After high school, she moved almost two hours away to pursue a degree and independence at UW–Whitewater. Not only did she earn a BA in multimedia digital art, but the skills to live independently with a team of caregivers. Shortly after graduation, she met her partner of 15 years and moved to Janesville, where she currently resides. She worked for 14 years in nonprofit marketing until recently retiring to focus on her health. Last spring, her partner and full-time caregiver passed away unexpectedly. In order to remain independent and stay in her home, she recruited and hired a team of 10 personal care assistants from scratch thanks to Family Care's SDS program. After seven months of living with her parents so they could care for her while she grieved and recruited caregivers, she’s incredibly grateful to be living on her own with the support of her amazing team, with her two dogs, in her home of 11 years.

How are you involved with self-determination? Why did you join the SD Network?
Lauren is currently one of two camp coordinators for With A Little Help, Inc., an organization that provides a weeklong summer camp and weekend camps for adults with neuromuscular diseases. More information can be found at walh.org

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Lauren and some friends are also hosting a wheelchair accessible wellness and nature retreat April 25th–27th at Easter Seals Camp Wawbeek in Wisconsin Dells, WI. This weekend-long retreat experience will offer professionally led group sessions and workshops focusing on mental health, nature immersion, and community building for individuals of all abilities, as well as access to miles of paved nature trails, nourishing homemade meals, and fully accessible accommodations. More information and registration can be found at bit.ly/retreatable

What tip or resource would you like to share with people who want to be more self-determined?
In 2015, Lauren wrote and self–published a children's book entitled The Out Of Reach Peach by Lauren Oh. She explains that it was originally created as a baby shower gift for her best friend's first child, and the story follows, Leon, an owl who doesn't let his uniquely small wings prevent him from going on adventures and conquering challenges with the help of his new friends. The book is available now on Amazon.

What are some of your hobbies?
Lauren loves art of all kinds and enjoy writing, photography, and creating digital art. She also enjoys anything involving nature including going on trail walks and gardening. She and her partner used to enjoy traveling, camping, and attending music festivals in our converted shuttle bus camper. 

***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.

• Proposals must include a self-advocate(s) as a lead or co-presenter.
• Panels should be limited to no more than 3 people. 
• Conference sessions must support Self-Determination and Self-Directed principles.
• Sessions will be all in-person. Presenters must attend the conference   in-person.
• Presentations should focus on practical, take-home strategies that people can implement in their lives.
• Sessions should not promote specific agencies or products. 
• Repeat or similar sessions from previous conferences will not be considered.
• Sessions will be 1.25 hours in length. Self-Advocate sessions will be 30 minutes in length.
• A typical session has an audience of 50-75 attendees. 

• Handouts: Presenters agree to submit the PowerPoint and other materials through the online portal by September 23, 2025. You are responsible for providing 50-75 copies of your materials for your in-person session. Please use plain language. 
• Equipment: A screen, A/V cart, LCD projector, laptop, and microphone will be provided in each breakout room. Bring your presentation on a flash drive or use your own laptop. 
• Presenters must register for the conference. Presenters must attend the conference in-person.

This resource provides an overview of what DEIA is, why DEIA efforts are essential for disabled Americans, and how diversity, equity, inclusion, and accessibility efforts have been affected by these recent Presidential actions, including Executive Orders and guidance related to them.

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Several major U.S. airlines are challenging a new federal rule aimed at improving travel for those with disabilities. American Airlines, Delta Air Lines, JetBlue, Southwest Airlines, United Airlines and their trade association, Airlines for America, or A4A, are petitioning the U.S. Court of Appeals for the Fifth Circuit to review the regulations, which the Department of Transportation finalized in December.

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This issue brief provides an overview of what Medicaid home care (also known as “home- and community-based services” or HCBS) is, who is covered, and what services were available in 2024.

Read brief

Self-Determination Network News:

February 2025

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

The Board for People with Developmental Disabilities is hosting a webinar every Friday explaining the latest news about what's happening with Medicaid. Follow the Wisconsin Board for People with Developmental Disabilities and InControl Wisconsin on Facebook to find the registration information for the webinar every week.

Stacy’s Journal

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

• Ending Subminimum Wage: 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. Learn what this rules would assure.
• Caregiver Training Courses in Different Languages: The Wisconsin Wisconsin Department of Health Services recently announced that the free online training courses for direct care professionals are now available in English, Spanish, and Hmong. Share these resources with others who may benefit from these.
• Labor Crisis Puts People at Risk: Caregivers are underpaid, overwhelmed, and increasing leaving the field. Find out what advocates say needs to be done to help with this crisis.
• Medicaid 2025: What to Watch: In 2025, many issues are at play that could affect Medicaid coverage, financing, and access to care. Learn what big changes are expected.
• Youth Leadership Forum: The Youth Leadership Forum is a week-long, overnight leadership training and career awareness program for high school students who have disabilities. Applications due March 24th. Learn more and apply today!
• Disability Representation in Images: Getty Images recently committed to focusing on ensuring that its images depict disability authentically and with appropriate diversity. Learn what they're doing.
• Work Requirements: Work requirements in Medicaid have resurfaced as part of a broader legislative package of potential changes to Medicaid designed to significantly reduce federal Medicaid spending. Read about what's being considered.
• Black Disabled Activists: February is Black History month. Check out this list of famous black disabled activists.
• Disability Employment at an All-Time High: The latest disability employment report revealed that the Labor Force Participation Rate for people with disabilities. Read about what's contributing to this increase.

Upcoming Events 

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

• Webinar: I Do Not Want Your Cookies: People with Disabilities Experiences on Advisory Committees: February 26th, 1p.m to 2p.m., Virtual
• U.S. Access Board Webinar: Accessible Means of Egress: March 6th, 1:30p.m. to 3p.m., Virtual
• Disability Advocacy Day 2025: March 12th, Monona Terrace and State Capitol, Madison WI
• Natural Supports: Who's In My Circle?; March 12th, 1:30p.m. to 3p.m., Virtual
• Too Big to Thrive: March 19th, 1:30p.m. to 3p.m., Virtual
• Lessons from the Budget Authority State Innovation Lab Collaborative:  March 26th, 1p.m. to 2p.m., Virtual
• Financial Management Services: Friend or Foe: April 2nd, 1p.m. to 2p.m., Virtual
•  Proactive Program Integrity Within Self-Direction:  April 9th, 1p.m. to 2p.m., Virtual
• Self-Direction for the Long Haul: April  16th, 1p.m. to 2p.m., Virtual
• Behind the Curtain: Understanding State Administration of Self-Direction: April 23rd, 1p.m. to 2p.m., Virtual
• People with Disabilities Love Self-Direction, But How Do Waiver Participants and Administrators Plan for the Future?: April 30th, 1p.m. to 2p.m., Virtual
• Circles of Life Conference 2025: May 8th & 9th, Wilderness Resort, Wisconsin Dells, 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.

February is Black History month. The World Institute on Disability put together a list of black 12 advocates and activists with disabilities. They have a great social media.

See list