SD Network

Category: Member Spotlight

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.

Member Spotlight: Richard


By SD Network, 2023-08-03

richard.jpgMeet Richard. When he’s not working at the Department of Revenue, he’s either advocating on the Arc board or participating in one of his many hobbies. He loves going to the Self-determination Conference each year where he meets new friends. He encourages people with disabilities to advocate for what they need to live a prosperous life in the community. We’re so fortunate to have him as member of the Network!    

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

Richard was born and raised in Connecticut, but now he currently lives in Madison, Wisconsin. He shares that he has mild autism and has done numerous amazing things independently. He has worked for the Wisconsin Department of Revenue for almost 32 years.

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

Richard explains that he first got involved with Self-Determination when a friend, Nancy Alar, talked to him about what Self-Determination is. He has attended the annual Self-Determination Conference at Kalahari Resort for many years.

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

An exciting thing for Richard is that he is a board member and self-advocate for the Arc-Dane County in Madison.  He shares that he has excellent math and cooking skills, and he’s very outgoing and friendly. He is very committed to his job at the Wisconsin Department of Revenue.

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

Richard encourages people who have disabilities to advocate for the accommodations they need to be able to live and work in the community. " Also, I would treat every single person with disabilities with respect, inclusion, acceptance, and love,” he says.

What are some of your hobbies?

Richard has a variety of hobbies which include: cooking, traveling, riding his bicycle, bowling, mini golf, going to high school football games, and making new 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: Kevin


By SD Network, 2023-06-29

IMG_1621.JPGMeet Kevin. This music-loving father loves watching his son succeed. He not only advocates with his son, but, as the director of an IRIS Consultant Agency, he also works with others with disabilities to ensure they have the support to be able to live and work in the community. He tells people that it’s OK to fail sometimes because failures often lead to some of life’s most important lessons. We’re so fortunate to have Kevin as a member of the Network!

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

Kevin is the Director at Connections, an IRiS Consultant Agency.  He’s the father of Tyler, a 26-year-old with intellectual disabilities. He shares that since Tyler was born, they have had expectations for him and expected those that interacted with Tyler to also have expectations. Tyler has his own shredding business. “We advocate with Tyler, not for Tyler,” he says. 

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

Kevin explains that when Tyler was born, they knew they needed to educate themselves to ensure he would have the best quality of life possible.  He applied for and was accepted to the Wisconsin Board for People with Developmental Disabilities (BPDD) where he spent eight years on the Board including two years as Chair. “I learned a great deal that not only enhanced Tyler's life, but also those we got to know and share things via social media,” he says. He joined the SD Network to remain informed about what is going on and to be able to share some of the experiences that we found beneficial. 

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

Kevin explains that Tyler has completed his first couple of shredding jobs and generated income. “When I see how excited he is while shredding, I know that it is giving purpose to his life,” he tells us. Working in the IRIS program, he explains that he sees great successes of people living independently and having community integrated employment with the necessary support.   

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

Kevin reminds people that it is OK to try and fail. He explains that the best lessons he has learned in life are from his failures. Never be afraid to ask for help. “There are times I need to ask for help and it helps me make a more informed decision,” he says.   

What are some of your hobbies?

With the pandemic slowly moving behind us, Kevin is looking forward to listening to live music again—it does not matter if it is a church festival, Summerfest stages or a major concert.  If things work out, we plan to go to either Memphis or Nashville in August.

***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: Jenny


By SD Network, 2023-06-06

Me 2023 FS.jpgMeet Jenny. After a tragic accident changed her life, this amazing lady made the decision to be a person who aspires to live life to the fullest. She has committed her life to raising awareness for people living with paralysis and neurological disorders. The Fashion Show she started promotes highlighting the importance of medical research, wheelchair accessibility and inclusion within the community by breaking down barriers and changing the stereotypes society has about wheelchair users. It has raised hundreds of thousands of dollars for medical research. She encourages people to follow their dreams. We’re so fortunate to have her as a member of the Network!

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

On March 16, 1997, Jenny was a victim in a tragic drunk driving accident, leaving her paralyzed from the chest down. At age 24, she was lost, living life wondering why she survived that horrific day and what was her purpose in life. “The independence, livelihood, career and dignity I once took for granted were all stripped away. I found myself living a life surrounded by physical limitations,” she explains. As she chose to be an individual who aspires to live life to the fullest, with the same freedoms as the rest of the world, she found it to be even more challenging. Since that time, she committed her life to raising awareness for individuals suffering from paralysis and neurological disorders.

In 2001, Jenny reigned as Miss Wheelchair Wisconsin which in turn jumpstarted her career as a Motivational Speaker. Over the years, she shares that she has been blessed with the opportunity to share my personal testimony and experience with a countless number of schools, colleges, universities, churches and correctional institutions. Highlighting topics such as the consequences of reckless driving, importance of medical research and overcoming adversity, just to name a few.

Jenny tells us that it had been her dream to organize and direct a fashion show and community awareness event completely comprised of models in wheelchairs to help raise money for medical research such as, spinal cord injuries and other neurological disorders. She decided to propose this idea to a few key friends that she knew could help her vision come alive on the runway such as, her now good friend, Bryon Riesch. Bryon was in a devastating accident that left him paralyzed from the chest down on April 25, 1998. His friends and family helped establish the Bryon Riesch Paralysis Foundation (BRPF) to assist others faced with a similar situation.

After his injury, Jenny explains that they were introduced in hopes that they’d become a good support system for one another. And they did! It was clear that their friendship was going to last a long time. Hence, “This is How We Roll" was created. A Fashion Show, Fundraiser and Community Awareness Event highlighting the importance of medical research, wheelchair accessibility and inclusion within the community by breaking down barriers and changing the stereotypes society has about wheelchair users. It also provides each model with a life changing experience by promoting positivity, self-worth and life skills. Models include a diverse group, ranging from teachers, nurses, lawyers, school children and even pageant titleholders. Check out 2023 Fashion Show highlights by going to https://vimeo.com/826538529.

Jenny goes onto explain that the Fashion Show is a perfect example of how communities and people working together can do great things. Since its fruition, they have introduced over 300 remarkable models (men, women, and children of all ages), representing the Midwest, to the runway. All wheelchair users. All “Rolling the Runway for Research". To date, they have raised over $217,000.00 for medical research and their fight against Paralysis!

For more information on how you can get involved with the Fashion Show contact Jenny at addisjenny@yahoo.com or 715-802-3456.

Learn more about the Bryon Riesch Paralysis Foundation go to www.brpf.org.

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

Jenny has been enrolled in IRIS since 2008 (I Respect, I Self-Direct) which is a state program designed for disabled individuals like myself who are able to direct their own services and support. She explains that it allows her to make her own decisions, including determining her daily activities and the types of support or assistance she need to meet her long-term care needs under an established budget. Individuals choose where they want to live and who is caring for them. “I live in a remote area so hiring has always been challenging but now with the caregiver crisis and the lack of people working has hit my life hard. I keep plugging along though and don’t give up,” she says.

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

For Jenny, it’s exciting to see firsthand individuals with disabilities living life. “I’m inspired every year to see these amazing models overcoming adversity whether they are a student, career driven, a parent, athletic or a state titleholder. They are looking beyond their disabilities and living fulfilled lives,” she tells us. It has confirmed why events like the fashion show and organizations like the BRPF are so important in Wisconsin.

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

Jenny encourages people to follow their dreams. She explains that if she hadn’t pursued her vision and her dream, the fashion show, that offers so much hope to so many deserving individuals, would not exist. “We need to keep our hope and faith first and foremost,” she says.

Two of her favorite Bible verses that she lives by are Matthew 11:28-29 and Luke 17:6

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

God has reminded me that I am here for a reason and a purpose. All I need is faith the size of the smallest seed on this earth – a mustard seed!

“He replied, “If you have faith as small as a mustard seed, you can say to this mulberry tree, ‘Be uprooted and planted in the sea,’ and it will obey you.”

What are some of your hobbies?

In Jenny’s free time, she enjoys spending it outdoors adaptive waterskiing, kayaking, hiking and spending time with family, friends and her puppy LuLu (service dog in training).  

***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: David


By SD Network, 2023-05-10

david.jpgMeet David. This advocate extraordinaire continues to serve his community in any way he can. When he’s not busy serving on one of the many boards he’s on, he’s appraising antiques or officiating weddings. This sports lover is involved in many exciting projects—including writing a book. We’re so lucky to have him as a member of the Network!

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

David is a 41 year old self-advocate. He shares that when he was 13 months old, he contracted a strep infection that his body couldn’t fight. He had a compromised immune system which mutated into full-blown arthritis. He doesn’t let the daily constant pain stop him from leading a successful life. He uses a power wheelchair and has found a treatment that works for him.

He lives in his own home and has lots of technology equipment in place to help him in case of an emergency. He also has an accessible van that he drives independently. This allows him to be an active member of the community. He had held several different jobs and has served on various disability advocacy boards.

In addition to his work in advocacy, David appraises antiques and used goods. he’s also a registered officiant and performs various types of religious ceremonies. He is working on writing a book about his life story as well. He lives in Richard County and is involved in mediating and relationships. “We all watch out for each other and help in any way we can” he says.

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

Although his professional advocacy journey began in 2009, David began advocating for himself when he was a young child. He shares that when he was young, he allowed to come to his doctor appointments to learn about his condition. He also, when asked, points people in the right direction and shares how he overcomes his struggles in hopes to steer them in the right direction in their journey. “Sometimes it’s some of the most important jobs that involve no pay that are the most notable and rewarding in this world. Through my positions I do not seek fame and recognition, I only seek solutions and viable means of maintaining programs and funding for my state and local community,” he tells us.

Currently, David is the Chairman for the Richmond County Commission on Ageing and Disabilities Board, Chairperson of the Aging and Disability Resource Center of Eagle County Governance Board, and Vice President for the Movin Out Board of Directors. He’s also a member of the Inclusa/Family Care Grievance and Appeals committee.

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

David is excited about all of the projects he’s working on. “Stay tuned,” he says.

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

David left us with the following quote and we didn’t want to paraphrase it because it’s so good.

For every good day that I have there are usually two not so good days to go along with it. The key to my success is surrounding myself with enough positivity to overcome the negative events that take place in my life. Always have goals and dreams no matter how far out of reach they seem. As we age things are bound to progress in the wrong directions making things harder. Tendons will stretch, muscles will atrophy, pain will be in plenty dished out as three square meals a day. Even still I shall trudge on at all cost. Adapt and overcome. No matter the odds never give up, for life is so short anyway and there are so many wonderful treasures this life has to offer.

What are some of your hobbies?

In his spare time, David enjoys watching sports, going deer hunting, watching the sunset over the Wisconsin River, and, most importantly, spending time with his three dogs. “They keep me company and are always there,” he says.

***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.

 

 / 10