News

Self-Determination Network News:

November/December 2025

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

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

• Best Cities: Traveling when you use mobility devices can be challenging. Learn about some of the top cities in the world for accessibility.
• Self-Direction Big Ideas: From deinstitutionalization to self-direction to direct support professionals, a diverse mix of authors from around the Intellectual and Developmental Disability field share their thoughts on what made each idea so important. Check out this list of innovative ideas!
• Be Inspired: Executive Director of People First Wisconsin, Cindy Bentley, was recently featured in an episode of Wisconsin Life. Watch Cindy's incredible story.
• Impacts of Cuts: Watch as experts discuss how the federal cuts will impact real people.
• Inclusive Workforce Campaign: The Ike Center in Milwaukee launched a new campaign aimed to give people with disabilities new training and new employment opportunities. Read about this program.
• Caregiver Crisis Worsening: New research shows that the caregiver crisis is only worsening and more adults are serving as family caregivers. Learn what else the research revealed.
• A Caregiver's Survival Guide: This caregiver survival guide is made up of advice from caregivers. Check it out!
• Sibling Support Study: A student in the Social Welfare Program at UW-Madison is conducting a dissertation study focused on the experiences of siblings supporting their siblings with intellectual and developmental disabilities. Find out more about this study.
• Call for Proposals: Proposals to present at the 2026 Family Voices Leadership Conference are now being accepted. Applications are due December 19th.
• When Federal Cuts Hit: The Wisconsin Department of Health Services estimates billions of dollars in state cuts as Medicaid reductions move forward. Read about what a recent analysis found.
• Strengthening the Workforce: This paper offer states examples to strengthen their respite care workforce to help ensure that caregivers have access to high-quality respite care. Take a look at these ideas.
• Judge Orders White House to Restore Sign Language Interpreters: A U.S. District Judge ordered the White House to restore Sign Language interpretation at all press briefings by the President and the press secretary. Learn why this occurred.
• Approach to Aging Well: This report highlights macro-level trends shaping how individuals and families approach aging at home, implementation strategies that increase awareness and improve access to tools and resources, and specific action steps for key stakeholders including healthcare, financial services, employers, advocacy groups, community-based organizations, and government agencies. Read through it and think about what you can do.
• Listen: In this podcast, the financial and policy barriers that people with disabilities who rely on home-and-community-based services face are discussed. Listen to it to find out what advocates are worried about.
• Disability Justice Zine: Two Wisconsin artists have created a disability justice zine titled Crip Wisdoms: A Feminist Disability Studies Coloring Book.  Learn about this piece.
• Expected Medicaid Cuts Create Fear: The impact of the expected cuts in Medicaid has put fear in many parents of children with disabilities. Read about one mother's worries.
• Disability Employment Historically High: A new report finds that the number of people with disabilities who are employed has grown over 30% since the start of COVID. Find out what this is attributed to.
• Passing to Note: Alice Wrong, a well-known national disability activist passed away. Read about her contributions in advocacy.
• AgrAbility of Wisconsin: AgrAbility is a a partnership between the University of Wisconsin-Madison Extension and Easter Seals Wisconsin, to support farmers with disabilities in continuing their agricultural work.  Find out what the program provides.
• Accessibility Partnership: At least 40 businesses in Door County are voluntarily undergoing an analysis of their accessibility and allowing that information to be published for the public. Read about this partnership.

Upcoming Events 

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

• Webinar: The ADA’s Effective Communication Requirements in Healthcare Settings: December 10th, 1p.m. to 2:30p.m., Virtual 
• Webinar: The Art of Accessibility: Implementing the ADA in Cultural Spaces: December 11th, 1p.m. to 2:30p.m., Virtual

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.'

Grocery shopping. Appliance shopping. Window shopping. Shopping for yourself.  Shopping for others. Shopping for necessities or shopping for fun. There are many different types of shopping that people do. While some people absolutely despise shopping, others really enjoy it. The way we shop has evolved over the years. Have you ever thought about how many different steps it takes to actually buy something? From figuring out transportation to get to the store, to reaching and grabbing an item or rummaging through racks of clothes to find the right size, to putting the items in the cart or carrying them to the checkout, to getting cash or a card out of your wallet.. There are many things that people have to do when going to a store. Most of the time, these steps aren’t even thought about because most of the time they become second nature to people.

“Do you have your list ready?,” my mom always asks me about a week before Thanksgiving every year. I always know what list she’s referring to even when she doesn’t specify it—it’s my list for Black Friday shopping.  For well over 25 years, my mom and I have gone shopping on the Friday after Thanksgiving. It has become tradition.  When my sister was younger, she used to come with us and we would have a fun girls day. Starting when I was in college, it was the only day I had to get all of my Christmas shopping done.

Before online shopping became a popular option for people, people had no choice but to physically go to stores to get items.  For most people, getting to stores isn’t usually a problem; however, when you have physical limitations that prevent you from being able to drive, it can often become an obstacle. As I’ve written about in previous entries, finding reliable accessible transportation to get to and from places is often a huge barrier for people who are unable to drive.  In Oshkosh, there is only one accessible cab company for non-medical rides (although they do medical transportation which is likely a big part of the problem) and it’s so unreliable. For example, a few years ago, I waited nearly three hours for a ride back from the grocery store. When you have a limited number of care hours, you can’t spend over half of the shift just running to the store— it isn’t feasible. The bus system is accessible, but, again, it takes too long to get to and from stores. Needless to say, I currently do most of my shopping when I’m with my parents or online.

Getting to the store is just the first step.  Nowadays, many places have automatic doors, but, if that isn’t the case, I have to wait until someone opens the door for me. Fortunately, people are generally eager to help. Once I’m in the store, I’m able to navigate through on my own pretty well. Having said that, problems arise when the aisles are narrow or products are in the middle of them.  This frequently happens especially during the holiday season. I try my best, but I’d be lying if I didn’t say I’ve never taken out a display or knocked multiple items off shelves and racks before.

If I’m looking at clothes, I’m usually able to rummage through the racks with my left hand. Albeit, tricky at times, I have just enough fine motor ability to move hangers up and down the rack.  When I find a clothing item that I’m interested in looking at closer, I’m able to grab it and put it on my lap.  Depending on what is, I can usually balance it on my lap long enough to decide whether or not I want to purchase it. Yes, items frequently fall on the floor and occasionally get run over, but I try my best. Although, not always the case in the past, someone is usually in the store with me, so I’m able to take the item to that person either to carry or put back on the rack or shelf if I decide I don’t want to buy it (I don’t have the strength or coordination to be able to put things back where they came from).  

If I’m shopping non-clothing items, depending on what it is, I’m sometimes able to grab the item off of the shelf and put it on my lap. Obviously, heavy or breakable things are off limits for me to try to pick up. If I’m able to reach and grab a thing off the shelf and set it on my lap safely, I then usually try to balance it and bring it to the person who is with me. Again, things occasionally end up on the floor, but I do the best I can.  

When I was going to school in Whitewater, there was a grocery store just a few blocks from campus. When the weather was nice, there were a handful of times when I went grocery shopping by myself. I don’t know how I ever managed to do it, but I would even get a gallon of milk on my tray. Since there were lots of people who had physical disabilities in Whitewater, people in the community were used to helping out. People would reach items off shelves for me. I even had cashiers go into my purse, take a check out of my checkbook, and put it through the register which would automatically fill it out. They also knew to hang the bags on the back of my wheelchair. It was a neat situation because it wasn’t unusual to see a person with a significant disability shopping alone in Whitewater.

Now that I have a worker with me most of the time, shopping is a lot easier. Fortunately, my apartment is less than a mile from a grocery store, so when it’s nice out, I’m able to walk to the store with my caregiver.  The person follows me around with a cart and grabs the items that I indicate I want. When I checkout, the caregiver helps me place the items on the counter and then gets my credit card out of my wallet. Obviously, with having people go into my wallet, I have to know exactly what I have in it. Furthermore, it goes without saying that I have to trust the person who is going into my purse. Once I’m done paying, the worker bags up the groceries (or whatever the items are) and hangs the bags on my chair.  If there are too many bags to fit on my chair, the worker will carry them.   Now that I have a caregiver all day, I’ll try using the cab to go shopping more during winter— maybe it has improved.

 The concept of online shopping didn’t become popular until the mid-part of this quarter century. As it became more and more advanced, it changed how the world runs.  For many people with disabilities and disabilities and health conditions, being able to shop in the comfort of their own home has been life-changing. As simple as it sounds, being able to make purchases totally independently has been awesome. I have my credit card information in a secure place where I can independently access it, so I don’t need any assistance buying things online.

Personally, I like doing a combination of in-person and online shopping.  While the convenience of shopping is really nice, I really enjoy going to stores. Shopping often turns into a social opportunity and I love looking at different things. For me, navigating through the jammed aisles and crowds is part of the fun of shopping. Online shopping is great in certain situations.  There have been multiple times when I’ve purchased items off Amazon because I knew I’d receive it within two days.  That’s a really useful feature when you can’t just hop in the car and run to the store. 

Whether people like it or not, shopping is a part of almost everyone’s life. Some people face unique challenges while navigating through stores; however, if you love to shop as much as I do, you don’t mind navigating through those obstacles in order to partake in something you thoroughly enjoy!

***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 Wisconsin State Assembly and Senate have both passed a bill that creates a fine for individuals with "fake" service animals or false documentation of an emotional support animal. The effort is supported by groups representing restaurants, taverns, hotels, entertainment venues and landlords, while disability advocates are opposed. The bill needs Governor Evers' signature for Wisconsin to become the 35th state with laws prohibiting fraudulent representation of pets as service animals.

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At least 40 businesses in Door County are voluntarily undergoing an analysis of their accessibility and allowing that information to be published for the public. It’s part of a new partnership between Destination Door County and Wheel The World, an accessibility-focused travel agency.

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Meet Carl. This determined advocate has recently found the power of his voice. After trekking to the state Capitol to raise awareness about low pay rates for home caregivers, he has eyes set on going cross country to do the same thing. He’s taking Partners in Policymaking now and is thinking about running for county board supervisor in Spring. He encourages people to try to narrow your cause to a single issue when advocating. We’re so fortunate to have Carl as a member of the Network!

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

Carl is a 45-year-old C5 quadriplegic. He shares that he became disabled 18 years ago after drinking too much at Oktoberfest and falling off of his friend’s back porch. At the time, he was foreman of a concrete company and played guitar in three different groups. Since then, he’s been enjoying life and raising his three kids. “I’m very lucky I don’t have a breathing tube and that I can use my arms quite well,” he tells us.

For over ten years, Carl has been dreaming of crossing the country in my wheelchair. He explains that it started as a selfish desire to pack all of the adventures he has missed out on in life into one big trip. After speaking on the phone with three different people who have already crossed the country in their wheelchairs, it turned into an activist campaign. He spent about three years trying to build a team without any success before having the epiphany that he should do a proof of concept and drive from his apartment to the state capital Madison. His goal was to raise awareness of the lack of home healthcare access for people like himself who are on Medicaid and the underlying problem which is low pay for home health workers. Last summer, he left his apartment located in the Fox Valley and drove for two hours until the batteries died. He made it 10 miles. He then got in his van and went home to charge his batteries. The next day, he picked up where he left off. After a total of 13 days on the road, he made it to the Capitol. Along the way, he had some great awesome press coverage to raise awareness.

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

Carl recently learned about the Self-Determination Network. He shares that he’s guilty of not being involved in the disability community up until now. “My life has been comfortable and I didn’t feel that I was missing anything until recently when three of my longtime aides moved on” he explains.  Last summer, he learned that he seems to have a knack at communication, and he wants to use that skill to highlight issues in the disability community and get them fixed.

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

Carl is currently taking the Partners in Policymaking course and he’s considering a run for Winnebago County board supervisor this spring. He’s also thinking about next year‘s ride to Madison. “If I’m able to cross the country, I should be back by the middle of August which will leave me plenty of time to also go from my apartment to the capital again. I want to make this a yearly event,” he says.

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

Carl says if people are interested in becoming more self-determined, they’ve already achieved the first step. There are tons of ways to get involved. He encourages people try to narrow your cause down to a single issue if possible because that would be easier to focus on and hopefully create change.

What are some of your hobbies?

Right now, Carl’s favorite hobby is trying to break his all-time record of likes for a tweet on Twitter. His record is 256k.

***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.

Do you need help completing a Wisconsin Medicaid provider enrollment application on the ForwardHealth Portal? Join Department of Health Services for in-person support

If you are an adult long-term care (LTC) waiver services provider, the deadline to submit your Wisconsin Medicaid application through the ForwardHealth Portal (the Portal) is coming soon! It is important to enroll with Wisconsin Medicaid as soon as possible to make sure you continue to be paid by managed care organizations (MCOs) or IRIS (Include, Respect, I Self-Direct) fiscal employer agents (FEAs).

If you are looking for someone to help you enroll, the Wisconsin Department of Health Services (DHS) is hosting six in-person support sessions throughout the State of Wisconsin.
 

Find an in-person support session near you

Check out the table below to find the dates and locations for each support session. Sessions are from 8 a.m.–5:30 p.m. and each session is one hour. Sign up for an in-person support session to reserve your time slot.

Sign up for an in-person support session

Alice Wong, a disability rights activist and author whose independence and writing inspired others, has passed away. She was a national  advocate for people with disabilities and was known for her work in disability justice.

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