The nation’s pediatricians are getting new guidance on how to help teenagers with intellectual and developmental disabilities and their families navigate the transition to adulthood. In a policy statement published this month in the journal Pediatrics, the American Academy of Pediatrics is spelling out the steps that physicians should take as children move toward age 18 when they will be legally recognized as adults.

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Batman. Superman. Spiderman. Elsa. Belle. Monana. Whichever fictional character it may be, kids often idolize a specific character starting at a young age. As kids get older, those characters switch from fictional people to real-life superstars. Often, teens and young adults have obsession over a famous celebrity or athlete. Whoever the famous person may be, people often look up to her/him because she/he has had a positive influence on their lives. Celebrities and famous people are often referred to as superheroes. Whether we admit it or not, every single person in the world likely has a superhero that they look up to. People with disabilities are no different. Our superheroes may be different than the normal celebrities people commonly think of, but that’s because we often have a different perspective on life.

A few years ago, I wrote about the heroes in my life. I talked about how my family and friends are my heroes. I explained how I consider the assistant who I was blessed to have from second grade through 12^th grade to be one of my heroes. All of my family members, especially my mom, dad, and sister, are my forever superheroes because they’ve rallied around me and supported me literally since day one. I wouldn’t be anything without their continued steadfast love and support.

While that journal entry still holds true today (and always will), a few years ago, I was blessed to meet a friend who has turned into another hero of mine. Let me preface this by sharing that I’m utterly embarrassed to admit that in junior high and high school, I deliberately avoided students with intellectual disabilities. This was for obvious reasons---I felt the need to prove my intelligence and wanted to desperately fit in. Looking back, I can give myself grace because I understand why I did it, but how ironic is it that 20+ years later, I tell you that one of my heroes is someone who has an intellectual disability? How experience and education can change one’s perspective!

I first met Cindy Bentley about ten or eleven years ago with I was appointed to the Independent Living Council of Wisconsin. Our paths have crossed hundreds of times since then as we work on many of the same disability advocacy things together. Somewhere along the lines, we became friends. It’s not my place to share all of her story, but this amazing woman is the definition of resilience and self-determination. She had a very rough beginning and spent many years in a state institution.

Recently, I was honored to have been able to attend an event celebrating the 40^th anniversary of Cindy not only living but THRIVING in the community. She has done far more than most people will do in a lifetime. She is the executive director of a statewide disability organization and has done more than she even realizes for the disability community.

What I admire most about Cindy is that she’s not afraid to speak up when she doesn’t understand something. It doesn’t matter what the event is or who is there, she will speak up if she doesn’t understand what’s being talked about. She will also go to bat for people who are being mistreated or aren’t getting the support they need. She’s not afraid to make waves to create change.

Admittedly, while I was at her celebration, I had a moment where I sat there looking around the packed gymnasium of people (I probably knew 75%) and just thought how amazing it was that all these people came together to rally around this one amazing individual to help her succeed in the community. The saying, “it takes a village to raise a child” is applicable to adults as well. As I’ve said in past entries, I know that I have a village of people who support me. It was incredible to see Cindy’s village come together to support her.

As we were driving back from the event, I said to my mom, “20 years ago, I wouldn’t have been caught dead at something like that, but that woman has taught me more than any college class ever did. I love her.” It’s really cool to see how perspectives can shift over time. It was really a special event.

I full-heartedly say that Cindy is a hero in my book. As someone with a significant physical disability, I look to Cindy to be reminded of perseverance and inspiration for whatever challenges life throws my way. I’m reminded that almost anything is possible if you put your mind to it. Thank you, Cindy, for being one of my heroes. Please always remember how loved you are!

***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.

UWM researchers are working on a robotic arm accessory that is designed to increase mobility for people with disabilities. Over the last four years, students studying Biomedical Informatics, Computer Science, Mechanical Engineering and Electrical Engineering have been working on this project. This research was partly funded with a grant from the National Institute of Disability, Independent Living and Rehabilitation Research. Researchers say they will test the accessory this summer with actual patients.

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Meet Julie. This fierce advocate for people with disabilities full-heartedly believes in the true meaning of self-direction and continues to push for change. She’s involved in several projects and groups around the state working to improve things. She encourages everyone to let their voice be heard. We’re so fortunate to have her as member of the Network!

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

Julie lives in Brookfield in Waukesha County. She has been married to a great guy for 32 years, and they are the parents of Kathryn, an amazing self-advocate who is 28 years old and their son Andrew who is 30 years old. “Both of our kids work and live on their own and have great lives,” she  says.  She explains that she has been advocating for people with disabilities since Kathryn was born, and it has become a very big and important part of her life.  

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

Julie shares that since the day Kathryn was born, they have been committed to creating a sustainable life for her that was as much like that of a person without a disability as they possibly could.  That is really started her life as a disability advocate. When her daughter was a year old, she sat on their county Developmental Disability Advocacy Committee (DDAC); when Kathryn entered school, Julie got involved trying to create the most inclusive opportunities for her and other students with disabilities; in 2014, she did the life-changing Partners in Policymaking training and the following year their Partners group founded Save IRIS. “Unbelievably, we were able to actually save IRIS,” she exclaims!  From that point forward, she has been very active on the state and local level to promote full community participation, meaningful self-direction in Medicaid LTC, inclusive, and community-based housing.  She also sat on the WI Rehab Council.....  Currently, she is the vice president of InControl Wisconsin, sits on Survival Coalition, is working to transform Save IRIS into a self-advocate-led grassroots issue action team, and is participating in creating a report to address the deterioration of self-direction in the WI IRIS program.

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

For Julie, self-advocates, families and disability advocates are the good news!  She believes that people with NO LIVED EXPERIENCE and very little appreciation for what true self-direction means and just how difficult it is to live with and manage a life with disability are making too many decisions that negatively impact people's lives! “Our community has the strength and determination to have a positive impact. We just have to come together and become a unified voice for positive change, full citizenship and dignity within the service delivery system,” she tells us.

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

Julie encourages everyone to make your voice be heard! She has two important suggestions on how to do this:

1. Don't assume that what your IRIS consultant tells you is correct when it comes to building your self-directed life.  Challenge them; insist on a sustainable community-based life; call the ombudsman program;
2. Give public comment at the IRIS Advisory Committee meetings (4th Tuesday of odd numbered months usually around 10:00 am).  You get 3 minutes, so write up your comments, and tell them what works, what doesn't and what can be done to make IRIS work better for you. You have no idea how important this is!!!  Also, consider applying for a position on the committee!

What are some of your hobbies?

Julie loves to garden!  Mostly flowers, both perennials and annuals she says. The past few years, she has started growing vegetables too and it's been really fun learning how to do this while growing good food we can use! She loves to walk, hike, cook and hang out with all the wonderful people she knows and loves!  “There just never seems to be enough time to do it all,” she tells us!

***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 U.S. Department of Transportation’s Federal Transit Administration announced $7.8 million for 17 projects that will improve public transportation for people with disabilities, older adults, and low-income individuals. The grants support organizations that coordinate public transportation for underserved groups, allowing them to access healthcare, community services, education, and jobs by building partnerships among health, transportation, and human services providers.

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The Village of Grafton Police Department recently built a sensory room in the department to provide a calming space for those who may be in distress. It includes specific features to help calm individuals. Things such as images of swimming fish projected on the wall, a bubble machine, weighted blankets, and stuffed animals are in the room. The room is available to everyone.

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