Member Spotlight: Julie
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:
- 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;
- 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.
