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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The Pink Umbrella Theater Company was founded in 2018 as Milwaukee’s first theater for artists with a wide range of disabilities. The organization holds sensor-friendly plays throughout the year and holds classes for aspiring artists and performers. In April, the Ruth Foundation for the Arts announced that Pink Umbrella will be the recipient of a $200,000 grant to be distributed over the course of two years. The funding will be key to growing the company

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According to a recent poll, the majority of people with disabilities have negative health care experience. 78% of the people reported having trust-damaging experiences in health care.  Many feel that stats like this should be a big wake-up call for the government to step in.

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The Centers for Medicare & Medicaid Services (CMS) released three resources to promote quality improvement efforts within Medicaid-funded HCBS. The resources are:

• 2024 Home and Community-Based Services (HCBS) Quality Measure Set (QMS)
• Home and Community-Based Quality Measure Set Reporting Requirements for Money Follows the Person (MFP) Demonstration Grant Recipients
• 2024 Long-Term Services and Supports (LTSS) Quality Measures Technical Specifications and Resource Manual

The Federal Communications Commission (FCC) is seeking comments on emergency message templates for multilingual Wireless Emergency Alerts (WEA), which the FCC proposes to provide in English, the 13 most commonly spoken languages in the United States, and American Sign Language (ASL).

In October, the FCC adopted rules to require participating wireless providers to make certain WEA available in these languages and to allow consumers to opt-in to receive them in ASL. Currently, WEAs are only available in English and Spanish. Providing WEAs in additional languages will help ensure these messages are accessible to as many people as possible.

For the video messages signed in ASL, the FCC seeks comment on the effectiveness of the ASL videos, as well as the format and production of the ASL videos. The proposed templates for ASL are not final and are presented solely for the purpose of seeking comment on what the final templates should be.

Comments on the 18 proposed WEA emergency message templates can be submitted online or by mail until June 12, and the public may respond to submitted comments until July 12. All filings must reference PS Docket Nos. 15-91 and 15-94. People with disabilities who need assistance to file comments online may request assistance by email.