SD Network

Category: Member Spotlight

Member Spotlight: Julie


By SD Network, 2024-06-11

My Photo.pngMeet 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.

 

Member Spotlight: Emily


By SD Network, 2024-05-12

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.

Member Spotlight: Rosie


By SD Network, 2024-03-31

FE57B14FAB434A1592943823F242E815.pngMeet Rosie. This Diehard Award winning very determined survivor and author travels around the world sharing her story of hope and perseverance. Her story has helped medical professionals, researchers, and advocates create needed changes to practices in medical facilities. She’s also a big advocate for Diversity, Equality, Inclusion, and Accessibility.  We’re so fortunate to have Rosie as a member of the Self-Determination Network!

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

This widow, mother, grandmother and educator is a fighter. In August of 2009, she underwent a total right knee replacement that developed into a MRSA staph infection. She explains that this healthcare acquired infection has led to 58 surgeries, over 200 hospitalizations more than 100 blood transfusions, more than 15 incidents of septic shock, a right leg amputation six inches above the knee, a total hip amputation, the removal of most of her pelvic bone and all the tissue to her waist on the right side. She shares that she also has suffered from C-dif. She developed it when she was in a coma because doctors had given her antibiotics to treat everything, they thought might be causing her infection and septic shock.

As she continues to battle this MRSA infection in her body, she’s driven to share her story of survival. “I believe in helping others with disabilities and other health concerns find their voices. I use my story to co-design with medical professionals, researchers and to advocate for patients and their caregivers,” she tells us. She has also written a book entitled, “Rosie’s Story, A Story of Faith, Hope, and Survival.” It isn’t found on Amazon because she signs every book. If you would like a copy, she says that people can email her.

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

Rosie shares stories about living with a disability. She helps healthcare organizations and communities around the world understand the lived experience of individuals living with a disability. “As the world looks at Diversity, Equity and Inclusion (DEI), I encourage them to look at Accessibility or DEIA because without accessibility there won’t be any diversity, equity, or inclusion. Without the self-determination of individuals with disabilities change will not happen,” she says. She joined the SD Network because she believes the voices of many helps to create change for all individuals living with disabilities.

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

One of the most exciting and humbling experiences that happened to Rosie around self-determination was at the Wisconsin Self-Determination Conference last year when received one of the Diehard Awards. She shares that she also values being a member of the IRIS Advisory Committee because she’s able to share not only her experiences as a participant, but also the experience of other participants. “Finally, I appreciate that I was asked to share my story, my experience as a participant, and being able to present with both people from the Ombudsman and DHS at the Self-Determination Conference the last two years respectively,” she tells us.

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

Rosie’s go-to resources are the DHS website or calling DHS; she also encourages people to join the SD Network directly.

For her tip, Rosie really encourages everyone to attend the Wisconsin Self-Determination Conference. “You will meet many individuals living with disabilities that live a very self-determined life and will learn about many resources available to you,” she explains.

What are some of your hobbies?

Rosie tells us that she doesn’t have a lot of hobbies, but she loves to read James Patterson books; she has read everything he has written. She also enjoys watching television series that have a police/FBI, hospital/medical, fire department, law/order, building/renovation, baking, and every 90 Day themed programs.

***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.

Member Spotlight: Lindsey


By SD Network, 2024-02-28

IMG_7057.jpegMeet Lindsey. This talented author, illustrator, artist, and motivational speaker has proven many people wrong. She’s excited to be a keynote presenter at an upcoming conference. She believes that it’s Important for people understand that it’s ok to ask for help. We’re so fortunate to have her as a member of the Network!

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

Lindsey shares that she was diagnosed with autism when she was 28 months old. Her family had given little hope from others. She explains that they were told that she would never drive a car, get a job, go to college, or never live independently. She has proved them wrong over and over. She does drive a car, she graduated with an Associates Degree from UW-River Falls, she works full time at Target, and she’s a homeowner with her sister! She’s a co author, artist and illustrator, and a motivational speaker. She and her family wrote their story together to help other families living with autism. She’s also a coauthor with her aunt for the children book series entitled, Little Lindsey. “We both want everyone of all ages to learn and understand what it's like living with autism,” she says. She has been an artist since I was 13 years old and presents her work in art shows. She’s an illustrator for Koda the Fluff, Florida’s famous therapy dog, as well!

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

Lindsey tells us that a couple years ago she heard about the Self-Determination Conference from her friend, Ashley Mathy. “She sent me information about it. Thanks to her, I was a keynote speaker in the fall of 2022,” she excitedly shares! She decided to join the SD network because she wants to share her story and help make a difference. 

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

Lindsey is excited that she will be a keynote speaker at the Employment First Conference this spring in Wisconsin Dells! 

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

Lindsey stresses that it’s okay to reach out for help. “You are never alone. You all matter. You are always welcome to share your story to help other people. Always be yourself. You have the capacity to be anything that you want to be,” she exclaims!

What are some of your hobbies?

In her spare time, Lindsey loves drawing, hanging out with friends and family, reading books, watching movies, traveling, and going out for walks.

***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.

Member Spotlight: Chad


By SD Network, 2024-02-02

unnamed 1.jpgMeet Chad. This rock climbing fanatic volunteers his time doing all sorts of advocacy things. He believes getting involved in the community is the key to being self-determined. We’re so fortunate to have him as a member on the Network!

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

Chad is a disability advocate in the Madison area.  He currently lives independently in his own apartment and receives supportive homecare.

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

Chad wants to help empower people to have self-determination by helping advocate in our community. “I think it’s important for people to have self-determination to advocate for themselves and to be the most independent they can be,” he says.

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

Some exciting news for Chad is that last year he became the president of the People First Wisconsin Madison chapter.  He also volunteers for the Youth Leadership Forum. He’s taking Partners in Policymaking this year as well.

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

Chad encourages people to get involved in the community. He explains that it is the best way to be self-determined. “I’ve met a lot of friends through my advocacy journey, and it helps me be a better advocate for myself,” he tells us. 

What are some of your hobbies?

In his spare time, Chad enjoys spending time with his friends, playing video games and going outside when the weather is nice.  He also loves rock climbing.

***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.

Member Spotlight: Brett


By SD Network, 2023-12-22

1000000136.jpgMeet Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. He is working to change the long-term care functional screen to make it easier for people. We are so fortunate to have him as a member of the Network!

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

Brett shares that he was born three months premature weighing 1 lb 15 oz. Due to this, he has cerebral palsy, but he doesn’t let it stop him. “I am always determined to make it impact in as many lives as I possibly can,” he says. 

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

Brett shows self-determination by not giving up. “I keep fighting every single day of my life. My life may not be perfect, but somebody always has it worse,” he tells us. He joined the Network to make a difference. 

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

Brett is working with legislators and stand functional screen for long-term care. “This isn’t going to happen overnight, but I’m not going to stop until it is changed,” he says.

What are some of your hobbies?

Brett enjoys watching TV and playing video games. He also loves spending time with his family and friends.

***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.

 

Member Spotlight: Randi


By SD Network, 2023-11-29

Meet Randi. This advocate extraordinaire believes that everyone has a right to make choices and encourages people to keep asking questions. When she’s not busy advocating, she loves traveling to different places. We are so fortunate to have her as a member of the Network! 

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

Randi has Cerebral Palsy. She shares that she is a twin, and my little sister has Down Syndrome. She explains that they’ve been navigating the system for a long time. “We've come so far but we have so far to go. I do this stuff so it's easier for other people,” she tells us.

Randi currently serves as the secretary for the Independent Living Council of Wisconsin. She explains that she joined to raise awareness about Independent Living Centers and what they can do to help people with disabilities.

Randi has over 20 years of active nonprofit experience creating donors and business contacts with a variety of organizations and professionals in the community, for-profit and nonprofit areas; she has nine years of experience in building relationships with diverse populations and partner agencies during her active involvement with the Disability Program Navigator Project and the Department of Workforce Development. She also been an advocate and a support broker for almost three years. 

How are you involved with self-determination? 

Randi realized that people don't always get a choice and she believes that anyone that wants to direct their life should be able to. “It's not my job to decide for someone; it's my job to help them get where they need to be and where they want to be,” she says. 

Why did you join the SD Network? 

Randi joined the Network to help others and share her knowledge of the system, so that  when she’ not here, there's always someone else that knows how to navigate something. “The only way to do that is to train people and to share,” she explains. 

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

Randi loves to see that more and more people choosing what they want; they're not just accepting “well, I'm disabled this is what I get.” She thinks that has to be due to our work in Wisconsin.

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

Randi encourages anyone who is having trouble getting what they need or accessing what they need to use social media to ask questions. Facebook or Instagram—she doesn't care, but she suggests that people get in touch with someone if they need help. Keep asking questions; if it doesn't feel right, keep asking questions,” she says.

What are some of your hobbies?

Randi enjoys traveling to different places and doing crafts with her sister.

***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.

Member Spotlight: Jen


By SD Network, 2023-10-30

image0 2.jpegMeet Jen. This volleyball fanatic has faced some challenges which have kept her off the court in recent years, but she has a goal of playing again one day. She has learned to advocate for herself, and she’s excited that the condition she has is being recognized understood more. We’re so fortunate to have on the Network!

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

This 52-year-old mom, grandma and wife has faced some challenges in life, but she’s determined to make the best of life.  Jen and her husband moved to Wisconsin from Illinois back in 2019.  She shares that in March of 2015, she started having tremors in her hands, feet and face.  The tremors quickly turned to whole-body seizures.  She went to almost all the top hospitals in Illinois looking for an answer.  She was told that she had Stiff Person's Syndrome, Essential Tremors and that she needed to be hypnotized because her "past life" was causing her seizures.  It wasn't until she had over 30 seizures in one day and was hospitalized at Northwestern Hospital that she received a true diagnosis.  She explains that her diagnosis is Functional Neurological Disorder (FND) and is a rare non-epileptic seizure disorder.  She went to Mayo Clinic in Rochester for a second opinion and they confirmed my disorder.  However, most doctors or neurologists didn't take this seriously. It was believed to be caused by trauma and wasn't very well known.  Often times, she would be accused of faking her seizures or that she was just out to get some meds.  

It wasn't until she moved to Wisconsin and became a patient at Monroe Clinic that she was finally taken seriously.  She tells us that her primary doctor and neurologist were familiar with FND and best of all, they believed her!  She decided that her goal was to become the best version of herself.  She started seeing a counselor, went to PT, OMT, Massage Therapy and a chiropractor to help her physical self become stronger.  She still knows seizures, but she’s now aware of what can set them off.  She knows what to do when she feels them coming on.  “Most of all, I don't hide from the public anymore,” she says. 

She and her husband own a wheelchair company in Juda.  They help people with disabilities all day, every day.  She can’t work a regular schedule, but she tries to help out at the office as much as possible.  

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

Jen has just joined the Self-Determination Network, but she’s excited to see what it’s about. 

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

Some exciting news for Jen is that FND is now more recognized and doctors are taking it seriously.  “I have fought and fought for my own self and didn't take no for an answer,”  she tells us. 

What are some of your hobbies?

Before Jen was diagnosed with FND, her hobbies included playing and coaching volleyball.  She coached grade school and club volleyball.  It was her hope to one day be able to play with her sons.  Unfortunately, physical stress or emotional stress can cause her to have a seizure. “However, it is still my goal to one day return to the sport I love,” she shares. 

***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.

Member Spotlight: Melanie


By SD Network, 2023-09-30

unnamed.jpgMeet Melanie. This young lady is determined not to let her limitations stop her from living a successful life. She has many goals and she’s determined to meet them. She encourages people not to give up even when life seems unfair. We’re so fortunate to have her as a member of the Network!

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

Melanie shares that she was born with her disability. As a kid, she says she had a decent life. She explains that during college is when it really started to hit her how many barriers adults with disabilities face to be able to be self-sufficient, contributing adults in society. She’s currently still working through trying to find resources to get employed enough to cover her healthcare needs and find affordable accessible housing.

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

Melanie first heard the term self-determination during the pandemic after joining the Wisconsin Disability Connections Facebook group. She was looking for support and resources and was very interested in learning more about what all self-determination all entails. “I joined the Self-Determination Network to gain a greater sense of community and belonging with other people with disabilities,” she says. 

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

Some exciting news for Melanie is that she’s working towards getting employed for the first time. She has an associate degree in accounting, and she explains that now that she knows how to advocate better, she’s working with the Department of Vocational Rehabilitation in hopes to find employment. She’s looking for something in the Administrative Assistant field she thinks. 

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

Melanie encourages people not to give up! She tells us that she has gotten really down on herself as an adult when life milestones such as getting a drivers license, graduating college, and now getting a job, and moving out all seemed to come at a slower later pace in life than her peers without disabilities. “But I am determined to make those goals happen for myself,” she exclaims!

What are some of your hobbies?

Melanie loves being an aunt to my niece and nephew. In her free time, she enjoys Diamond Painting.

***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.

Member Spotlight: Brandon


By SD Network, 2023-08-31

Brandon.jpgMeet Brandon. This camera enthusiast is a freelance content creator and also works as a communications assistant at a local television station. He’s determined not to let people tell him what he can and cannot do. He encourages people to think about how they can work around the challenges that they face and show others that there are many different ways of doing things. We’re so fortune to have him as a member of the Network.

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

Brandon is a freelance content creator and a communications assistant from Watertown. He tells us that throughout his life, people keep assuming what he can and can't do. He always has/had to prove he can do it, but in his own way. “Having one leg and a speech impairment can be hard at times but I work around the challenges,” he says.

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

Brandon wants to encourage others that they can do stuff, but in their own ways. “I want to show that, even though we are “different” and have “different abilities,” it doesn’t mean we can do stuff as “normal” people do; we just do things in our own “different” way,” he explains.

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

Some exciting news for Brandon is that he applied for first apartment. He has always lived with his parents.  He shares that he needs to challenge himself even more by doing things on his own and living on his own. “Of course, I’m excited to move out, so I have more freedom to do my own stuff I’m my own way,” he enthusiastically replies when asked if he was looking forward to moving out.

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

Brandon encourages people to look at their challenges in life, and think it through how can they work around them--show people you can do it in your own way!

What are some of your hobbies?

For Brandon, his “hobbies” are also part of his jobs. He enjoys doing camera work and graphic design. He also occasionally enjoys playing wrestling video games.

***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.

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