Self-Determination Network News:

May 2024

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Registration for the 2024 Self-Determination Conference Opens in July

The 2024 Self-Determination Conference will be held October 21st-23rd at the Kalahari Resort in Wisconsin Dells. It's one of Wisconsin’s biggest (and most amazing) event for people with disabilities and the people who support them. Last year, over 800 people attended the conference! This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined live. Registration will open in July. Stay tuned for details!

Please Help InControl Wisconsin's Caring Across Cultures Project

Are you someone who hires direct care workers?  Are you a family member of someone who receives support from a direct care worker?  Are you a direct care worker?  If so, InControl Wisconsin would like you to share a short video, audio clip, or written story of your personal experiences to help others understand the relationships between direct care workers and the people who hire them.  We will give you questions to answer, to make it easier for you.

Your stories will be used in online learning courses and/or other resources hosted on InControl Wisconsin’s website as part of the Caring Across Cultures learning platform. (See this link for more details about the project.)

Why are we asking for your help? Caring Across Cultures is a project with a goal of helping direct care workers and the people who hire them to build strong relationships. We want to help them connect and build trust across cultural differences.

What better way for someone who is thinking about hiring direct care workers to hear directly from people who are already doing it? The same is true for someone thinking about becoming a direct care worker. There’s nothing like hearing from someone first hand about what it’s like.

You can record a video or audio clip yourself with your phone (or other device) or you can ask us for help.

Here is a document to help you record your own video or audio.  This document will also tell you how to send us your finished recording: CLICK HERE

Need some help?

• You can work on this at home. If you need some help, Contact Sarah Godfrey, at sarah@promotelocal.com / (262) 349-1968, and she will schedule a phone or video call with you.

• Are you coming to Circles of Life on May 16h in Stevens Point?  How about Employment First in Wisconsin Dells on May 21st? We will have recording equipment on site at both conferences.

Ready to Do This?

• Sign up here! 

• Questions for you to answer when you record yourself

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.

This month, we shined the spotlight on Emily. This active young woman loves being busy. Whether it’s she’s rock climbing, water skiing, snow skiing, traveling, or volunteering at her church, she can’t sit still. Check out this month's Member Spotlight to get to know Emily.   

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:

• Take a Survey: The American Institutes of Research is looking for people with disabilities to take a survey about the ways you find and use information in your daily lives. Check it out!
• Roadblock for Proposed Funding Boost for In-Home Care: A $258 million plan to improve the pay for thousands of home health care providers in Wisconsin was halted after lawmakers on the Legislature’s powerful budget committee blocked it. Learn the impact of this.
• Research Funding for Mobile App Opportunity: A new funding opportunity is available for programming to plan and conduct research, demonstration projects, trainings, and related activities to develop methods, procedures, and rehabilitation technology that maximize the full inclusion and integration of people with disabilities. Applications due June 7th.
• Lawsuit Seeks Electronic Ballot Option: Disability Rights Wisconsin, the League of Women Voters of Wisconsin, along with four voters with disabilities filed a lawsuit against the Wisconsin Elections Commission. The lawsuits seeks to allow voters with disabilities to cast their ballot electronically.  Learn more about what they are asking for.
• 2024 Election Toolkit: The Wisconsin Disability Vote Coalition has released a toolkit which includes videos, posts, and graphics to get people ready to vote in elections this year. Check it out!
• New Guidance on Voting Rights for People with Disabilities: The US Department of Justice issued an updated guide of The Americans with Disabilities Act and Other Federal Laws Protecting the Rights of Voters with Disabilities. Look at what's new.
• ABLE Accounts: Recently, Governor Evers signed a bill ordering the state’s Department of Financial Institutions to set up an ABLE program for residents or join one of the existing multi-state consortiums. Read about how these accounts help people with disabilities.
• Manufacturing Company: A manufacturing company in  West Allis has made a deliberate point to provide people who have autism meaningful employment opportunities. Find out more about this company.
• Caregiver Champion Collaborative: The National Caregiver Champion Collaborative will facilitate peer networking and engagement among professionals who lead caregiver services and supports. Learn more about this program.
• Best Airlines: U.S. airlines got a little bit better with mobility devices in 2023. Find out what the 10 best airlines for handling mobility devices are.
• Talented Artist: An artist in Madison creates coloring books that have universal quotes. Read more about this talented artist.
• Voting Grant Opportunity for Schools: The Wisconsin Disability Vote Coalition is looking for schools to partner with to help students with disabilities understand their voting rights and responsibilities. Learn about this opportunity.
• Discrimination Rule Finalized: The U.S. Department of Health and Human Services finalized a rule that prohibits discrimination on the basis of disability. Find out more about what this rule means.
• Workforce Brief: The US Department of Health and Human Services along with the Department of Labor released a brief summarizing a workgroup’s recommendations to federal and state agencies, non-profit organizations, and research institutions to improve data infrastructure and information on the HCBS workforce. Learn about the recommendations.

Upcoming Events 

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

• Wisconsin Council Of The Blind & Visually Impaired Advocacy Day: May 16th, 12p.m. to 1:30p.m., Virtual
• Webinar: Assistive Listening Systems: Where We Are Today And What’s On The Horizon: May 16th, 1p.m. to 2:30p.m., Virtual
• Employment First Conference: May 21st, Kalahari Resort, Wisconsin Dells WI
• Community Conversation: May 23rd, 10a.m. to 1p.m., Independence First, Milwaukee WI
• Webinar: Building And Sustaining An Accessible Federal Technology Environment: May 28th, 12p.m. to 1:30p.m., Virtual
• WisTech 2024 Training # 1 Unlocking The Power Of Recreation: June 11th, 10a.m. to 11a.m., Virtual
• WisTech 2024 Training #2 The ABCs Of AAC: June 18th, 10a.m. to 11a.m., Virtual
• WisTech 2024 Training # 3 Host With The Most: Inclusive Party Planning: July 16th, 10a.m. to 11a.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.

Meet Emily. This active young woman loves being busy. Whether it’s she’s rock climbing, water skiing, snow skiing, traveling, or volunteering at her church, she can’t sit still. As an Independent Living Coordinator at an Independent Living Center, she shows her consumers how to use self-determination to be independent. We’re so fortunate to have her as a member of the Network!

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

Emily is 27 years old living with spastic quadruple cerebral palsy. She has a passion for advocating  for the disability community. She shares that her goal is to assist and support individuals with disabilities. “There has been a lot of individuals and a lot of programs that have helped me get to where I am today and I would like to give that support to other individuals with disabilities as well,” she tells us. She never sits still, and she’s always trying new things and going on adventures.

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

Emily works as an Independent Living Coordinator at Independence First in Milwaukee. She explains that showing her consumers that they have self-determination and can be independent is the main part of her job. She joined the Network because she feels that the more connections she can make within the disability community, the better resource she’ll be for someone else.

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

Emily doesn’t want to give too much away, but she has been looking into making the next step in her career which is going back to school and getting her masters degree.

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

Emily explains that as an adult, having self-determination isn’t as scary as it was as a kid. She encourages people to have goals and to start small. “Work on your goals a little every day and ask for help from your support system if you need it,” she says.

What are some of your hobbies?

Emily enjoys being active. She loves waters skiing in the summer and snow skiing in the winter. Recently, she has been trying adaptive rockclimbing and she really likes that too. “Anything to keep active,” she says. She loves to travel (preferably to the beach, and she’s also very involved in my church. 

***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.

The brief provides background information on Home and Community-Based Services (HCBS) and the work of the Home and Community-Based Services Federal Opportunities Regarding Workforce and Research Data (HCBS FORWARD) workgroup. It summarizes the workgroup’s recommendations to federal and state agencies, non-profit organizations, and research institutions to improve data infrastructure and information on the HCBS workforce. Implementing these recommendations will bolster the data infrastructure needed to answer key questions about the HCBS workforce and drive data-informed policy decisions to improve the quality of and access to HCBS for the millions of Americans who are receiving or need these services. 

View brief

Wearing white after Labor Day. Listening to Christmas music in May. Opening the car windows in the dead of winter. Marrying a person of a different race or different economical status. Dying your hair bright pink. Men having long hair. Women shaving their heads. Older people wearing exotic clothes. What do these things have in common? They are all things considered to be “out of the norm.” As a society, we have developed the idea of how things should be. I’m not going to dive into how the “norm” was created because frankly I don’t know, but when people don’t follow the norm, we, as human beings, judge. We judge because it’s different than what we’re accustomed to. People break the norm in many different ways. Sometimes, it’s out of spite, but oftentimes, it’s due to circumstance or the desire to be different.   Whether it’s race, gender, sexual orientation, disability, or another uncontrollable factor or factors, people who are in one or more minorities often face even more judgment when going against the so-called norm. Although, it has gotten a lot more acceptable for people to break the norm in today’s day in age, there’s still quite a stigma.

“YOLO!” (you only live once). That’s what I texted in my family’s group chat one recent Saturday night. Along with the text, I sent pictures of my new haircut. Anyone who knows me knows that I absolutely love experimenting with my hair. Over the years, I’ve pretty much had everything hair style you can imagine. Long, short, bright blonde, yellow, red, permed, you name it…the reason I love experimenting with my hair so much is because it’s one of the few things on my body that I have almost completely control over. The key word in the last sentence is almost. Since I’m not able to physically style it, I have to rely on others to do it. This can be very frustrating because it’s rare that people do it exactly how it I want it. Generally speaking, short hair tends to be easier, but it also grows out faster. In society, the norm is that females generally have medium to long length hair until they are senior citizens. Of course, many people go against the norm with a variety of hairstyles. My mom and dad pretty are traditional when it comes to hair. They aren’t a fan of anything bold or different. They love long hair on ladies. Over the years, when I’ve done drastic haircuts, they’ve playful teased me like most families do. They aren’t afraid to let me know they don’t like it and that’s fine. While I respect their opinion, it’s ultimately my decision.

Call it a midlife crisis, call it being bold, call it functional, call it whatever you want…this time, I wanted to go very short for my haircut. Whenever I schedule a haircut, one of my favorite things to do is to look for hairstyles online. Again, it goes back to that control piece—it’s something that I can control. I’ve been looking at a certain picture of a hairstyle for awhile and decided this would be the time that I go for it. I almost completely shaved my head and I can’t begin to tell you how much I love it. It was a liberating experience. It’s super easy to take care of and I honestly love the way it looks and feels. As I expected, my parents aren’t fans, but that’s ok. I absolutely love it and that’s what matters!

Being a woman with a physical disability who has her head shaved will bring on its own set of stigmas and that’s okay. I will be mistaken for a male, but I was with my last couple of hairstyles; I’m okay with that. Other wrong assumptions will be made because it’s against the norm and that’s totally understandable. As I explained in a past entry, assumptions are unavoidable-they’re a part of life.

Hairstyles aren’t the only thing that I tend to go against the norm on. I wrote a whole entry about this awhile back, but this issue seems to be becoming more and more front and center as the world transforms its norms. In recent years, it’s become the norm to refer to people with disabilities as “disabled.” While I understand that people with disabilities want to be seen as a community and take pride in having a disability, I just can’t bring myself to use the term. It’s probably really boastful for me to say, but I want to be seen as a person first. I know I’m now in a real slim minority on this, but I’m okay with that. I’ll probably always be against the norm on it, but that’s fine with me.

Having a significant physical disability puts me against so many norms as it is. In most cases, I don’t mind going against the norms. Yes, I know that may sound contradictory to things I’ve said, but I guess I don’t mind being different on my terms. Choosing to be different is different than being part of a minority due to uncontrollable factors of life. I didn’t choose to have a disability, but I can choose my hairstyle. See the difference? I’m choosing to be different by cutting my hair a certain way. That’s my choice.

Society has really transformed its norms over the last 30 years and that’s a great thing. The world has become more inclusive for everyone. Norms are always transforming, and, yet, they’re meant to be broken. It’d be a very boring world if everyone abided by the norms of society.

Will I shave my head again? Much to my parents’ dismay, I probably will. Going against the norm often singles people out. Often, when you go against the norm, it makes you stand out which can be good and bad. When enough people go against the norm on something, overtime, it often creates a new norm.  I want to challenge you to go against the norm on something you believe in or want to do. Be bold. Take a chance. Remember, YOLO!

***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 U.S. Department of Health and Human Services finalized a rule that prohibits discrimination on the basis of disability. This rule, titled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, advances equity and bolsters protections for people with disabilities under Section 504 of the Rehabilitation Act.

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For Michael Ward of Madison, art has helped him find a purpose in life. Diagnosed with cerebral palsy when he was just five days old, Ward has speech and movement his whole life; however, that didn't deter him from finding his passion.  He started creating coloring books containing universal quotes in hopes of inspiring people with disabilities to preserve through life's challenges. Recently, Ward participated in an art festival.

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U.S. airlines got a little bit better with mobility devices in 2023. The 10 major carriers transported 835,327 wheelchairs and other aids last year, and there were 11,527 reports of damage. This article lists the top 10 best airlines for handling mobility devices.

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As part of the Biden-Harris Administration's Care Workers Recognition Month activities and in support of President Biden's Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, the U.S. Department of Health and Human Services announced that 20 states have been selected to participate in two separate technical assistance programs that together will help participating states better recruit, train, and retain direct care workers, who provide home and community-based services for older adults and people with disabilities.

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