SD Network

Category: Member Spotlight

Member Spotlight: Jen Stauss


By SD Network, 2022-01-17

image0.jpegMeet Jen. This outgoing self-advocate does everything she can to change the world’s perception of Down Syndrome. She works with a national organization that works to change the conversation about intellectual disabilities. She encourages everyone to advocate to achieve their girls and to set high expectations. We’re so fortune to have her as a member of the Self-Determination Network!

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

Jen is 45 years old and has  Mosaic Down Syndrome. She’s a lifetime ambassador for a nonprofit down syndrome organization called Nothing Down which is based in New Jersey. She explains that Nothing Down works to change the how the world views Down Syndrome.  She explains that they work tirelessly along with their filmmaker to change the conversation about intellectual disabilities. There’s been a huge transition from the negative stigmas that were so common not too long ago. They have produced 14 viral projects. They have been featured on media outlets such as MSN, The Today Show and many more. At the beginning of 2018 they formed an International Ambassador Program and now has over 60 ambassadors across the globe. The ambassadors have become the face of Nothing Down, representing the organization in eight different countries and in 22 US states. Jen loves being an ambassador because, “Having my voice heard on the issues that are important. Helping people feel more enabled to take control and providing practical support to overcome health and social care issues for our loved one with Down syndrome is what I love to do.” 

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

Jen got involved in self-determination to advocate for herself and others to get the support they need to live successful lives.

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

Jen is currently taking the Partners in Policymaking class through the Wisconsin Board for People with Developmental Disabilities. She hopes to change the way people view Down Syndrome. She’s not sure what exact policies she’d like to see changed, but things like supporting children in school, stop bullying, and making sure all kids are included and accepted are extremely important to her. “I know as I was included and accepted, but others aren’t,” she tells us.

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

Jen encourages people to set goals and advocate to achieve those goals that act as barriers. People should also participate in discussions that impact their quality of life and make choices based on personal preferences and interests. “Most importantly, keep high expectations of yourself,” she says. 

What are some of your hobbies?

In her spare time, Jen enjoys watching TV (she loves WWE) and movies. She also likes to do things like listening to music, exercising, writing, baking / cooking, being mindful, writing, practicing self-care, and going on adventures.

***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: Stefanie Primm


By SD Network, 2021-12-06

64201062667__F35B603D7EBC4129AF07D783087302E6.jpegMeet Stefanie. Growing up with a sibling with a disability shaped her outlook and passion in life. She runs an organization that supports families who have loved ones with disabilities. She enjoys making self-determination the center of peoples lives. She encourages people to set goals for the future. and tell your family and friends about them, so they can support you. We’re so fortune to have Stefanie as a member of the Self-Determination Network.

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

Stefanie grew up in Colorado and Wisconsin with a brother with autism. She shares that growing up with him really shaped her worldview about disability and belonging. She attended UW-Madison studied child development and then got a Masters Degree in Social Work. As a student intern, she heard about the Self-Determination Conference and got to attend for free. As her college career wrapped up, she learned about an incredible opportunity through the Waisman Center, where she could work with families like hers to help create a better future for their loved ones. “That work with families led to the creation of LOV-Dane, which became LOV Inc. (Living Our Visions Inclusively) in 2020. I've been the Executive Director of LOV Inc. for the last four years and feel very lucky to get to do work that I'm so passionate about. I love talking to families from different parts of the state and hearing about their hopes and dreams for their loved ones with disabilities. It is such a privilege to be able to be part of their journey while they make the best possible life for their loved one. At LOV Inc. our focus is on helping people figure out what they want in life and claim the power to make it happen,” she says.

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

While most of her work nowadays is with parents and siblings of people with disabilities, Stefanie explains that LOV Inc. has a major focus on self-determination for individuals with disabilities. Their staff team is part of the Living Well project and they spent the last few months reviewing the Rights Toolkit, which was a great starting point for many discussions. When they work with families or individuals with disabilities, they always make space for listening deeply to what is important to them in their life, and helping to navigate through any barriers they're experiencing. “I love being part of the SD Network to connect with other people doing similar work to us, and learning about new ideas people come up with,” she excitedly exclaims!

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

Stefanie explains that in recent years, LOV Inc has focused on diversity and equity, in addition to inclusion. This year, they've been able to expand their work with Spanish speaking families by hiring a Family Resource Specialist who is Latina. Alejandra Espejo has been connecting with families and helping them dream big for their child's future, including their child living a self-determined life. They've done a lot of education on supported decision making and rights, though these terms have different meanings to Spanish-speaking families. “Bringing the idea of self-determination to a new culture is challenging, but definitely worthwhile,” she says.

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

Stefanie thinks it is easier to be self-determined when you know what you want. She encourages people to set goals for your future, talk with close friends and family about what you want your life to look like, and then ask for the support you need to get there. She says, “If the future feels too far away, think about the life you want to have six months or a year from now, and find a way to take small steps toward that life. Many people are rediscovering who they are after COVID, so you're likely to find a lot of other explorers on your journey.”

What are some of your hobbies?

When she’s not busy working, Stefanie likes to do calm and soothing activities. She attends yoga classes at a studio near her house, work on jigsaw puzzles with family and connect with my friends. She’s looking forward to life after COVID when it will be easier to travel safely. There's a lot of places in the world that she still would like to see. London is probably at the top of her travel list right now, but she would be happy to even be able to visit friends in Washington state next year.

***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: Olivia Johnston


By SD Network, 2021-10-27

unnamed.jpgMeet Olivia. This determined self-advocate doesn’t let anything stop her from achieving her goals. As director of an advocacy program for high school students, she helps others learn leadership and advocacy skills. She has high hopes for herself including obtaining a driver’s license and possibly going to grad school. We’re so fortune to have her as a member of the Self-Determination Network.

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

 Olivia grew up in a tiny village called Brandon, but now lives in Fond Du Lac, Wisconsin. Currently, she works at Fleet Farm’s Fuel Center. She has a Bachelor’s of Arts in Psychology with a minor in Theology. Right now, she’s looking into grad school for family and marital counseling. She’s also the current director of the Wisconsin Youth Leadership Forum that is held every summer at Edgewood College in Madison, where they teach high school students with disabilities about leadership and self-advocacy skills.   

 How are you involved with self-determination?  

Olivia is a great self-advocate. “Although sometimes I do rely on close friends and family for assistance, but hey, everyone needs a little help every now and then,” she tells us.  She’s living independently in her own apartment and has a part-time job. She’s also working toward getting her driver's license.  

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

  Oliva is part of the Wisconsin Youth Leadership Forum (YLF) and she’s really excited that to have started a #WednesdayWisdom and other live chats on Facebook through the Wisconsin YLF page. This gave her the opportunity to talk to previous YLF staff and delegate members about their experience through the program and what they are up to these days. “It's been really hard to see each other and sometimes people just kind of get lost in life with what they are doing and don't really have time to meet up. It was nice to reconnect with them and hear about their memories of the program,” she says. About eight years ago, she informed the previous director that when the time was right that she would like to try being the new director. Olivia spent a lot of time talking with the previous director, and she spent two years being her assistant and learning everything that she could. She finally became director in 2016.

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

Olivia would like to share two resources: The YLF Facebook page and the Wisconsin Board for People with Developmental Disabilities website. Both provide lots of great information.

She encourages people to never give up. “Everything that you want will come to you if you work hard,” she says. 

What are some of your hobbies? 

 In response to this question, Olivia says, “Oh, boy, this is a tough but fun question to answer.” She loves to read. She explains that it's a great escape from reality and to enter a world that can fill your head with so much imagination. Another good thing about reading is that you can learn about life, learn lessons and even read to learn something new.  She enjoys watching TV and movies. A few of her favorites are “Heartland,” “Boy Meets World,” and definitely the Fall Hallmark movies!  She also loves to run. She ran cross country and track all through middle, high school, and college—she enjoys the fact that it's your own pace and you can just run for fun!  She enjoys connecting with friends--even though the last few years, it's mostly been through different apps or phone calls.  

***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: Tyler Wigington


By SD Network, 2021-10-04

unnamed.jpgMeet Tyler. This Special Olympian and Paralympian has real determination. Not only is he a superb athlete, he is a  great self-advocate. He has been to many different countries competing, and he is involved in various advocacy opportunities. With help from his great support system, he’s learning independent living skills and hopes to move out on his own someday. He encourages everyone to create a great support circle who you can trust to help guide you. We’re so fortune to have Tyler as a member of the Network!

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

Tyler Wigington is 26 years old and has been living in a condo for three years now. He shares it with his brother who provides about five hours per week of support with shopping, cleaning and cooking. He has been working 30 hours per week for a number of years. He currently works at Woodman’s where he prepares online order for groceries. He participates in many activities such as Special Olympics, a bowling league, Best Buddies and events at UW Madison. He also has a chihuahua dog named Pacho.

How are you involved with self-determination? 

Tyler has been involved with lobbying members of the WI Congress and Senate to help people with disabilities. He flew to Washington and met Tammy Baldwin and several other politicians. He even got to take a picture on the balcony of the Speaker’s Chamber. He has been trained as a Global Messenger and a Health Athlete leader. He also sits on the Unified Leadership Council for Special Olympics where they try to help others with disabilities learn to speak up for themselves and be their own advocate. He worked with the UW Waismen Center on a study to help include people with disabilities to be included in research studies as well. 

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

Tyler shares that he continues to work on independent living skills and hopes move out on his own someday—or maybe live with a friend and he can help him be more independent. After five years of working with Woodman’s, he will be leaving. ”It is exciting and a bit scary to leave, but I am ready for a new challenge and hope to work in something related to sports,” he says. 

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

Tyler encourages people should always have someone that cares for you helping you out. “My parents were training me to move out and now I am. I have a very good case manager that cares for me and allows me to choose how to live,” he explains. 

What are some of your hobbies? 

Tyler enjoys running.  He has completed in seven half marathons and his fastest time is one hour and 37 minutes. He’s on USA Paralympics and has traveled to Ecuador, Portugal and Australia for races. He also likes to participate in Special Olympics for bowling, flag football and basketball.  

***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: Jordan Anderson


By SD Network, 2021-08-19

IMG_0897.jpegMeet Jordan. This recent high school graduate has found his love for advocacy. He loves attending different events and connecting with others. He encourages people to get involved in disability advocacy. It’s a great way to connect with others. We’re so fortune to have him as a member of the Self-Determination Network.  

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

Jordan is from Auburndale, Wisconsin and he just graduated from Auburndale High School. He will be attending Project Search in Marshfield this fall. He loves connecting with other advocates.

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

Jordan joined the Self-Determination Network to meet others. “I want to meet other people that are like me and have the same needs and wants as me,” he tells us. Jordan is active in several different disability advocacy boards including Wisconsin Board for People with Developmental Disabilities, the Wisconsin Disability Vote Coalition, and the Wisconsin Supported Decision-Making Team. He has also attended many disability conferences, and is scheduled to present at a few upcoming events.

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

Jordan is looking forward to speaking at the Self-Determination Conference this year. He does a lot of work with the Disability Vote Coalition to make sure that people have the right to vote and he's happy that the governor recently vetoed the bills that would have made it harder for people to vote.

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

Jordan explains that he got into doing more disability advocacy things about a year ago. He loves attending conferences and connecting with other self-advocates. He encourages others to get involved with various types of advocacy. He explains that one opportunity could lead to many others.

What are some of your hobbies?

Jordan is an avid sports fan and loves to watch Wisconsin sports. He also enjoys talking with family and friends over zoom about politics and current events. He likes discussing policy issues as well.

***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: Sydney Badeau


By SD Network, 2021-07-31

Meet Sydney. This animal–loving self-advocate keeps busy by participating in various advocacy organizations. She thinks it’s so important to have a voice and speak up for what’s right. She encourages others to get involved in some sort of advocacy. We’re so fortunate to have her as a member of the Self-Determination Network!

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

Sydney is a disability self-advocate in Southern Wisconsin who lives on a farm out in the country. She serves on multiple disability advocacy boards including the Wisconsin Board for People with Developmental Disabilities, the Wisconsin Youth Leadership Forum Inc Board, and the National Council of Self-Advocates. She’s also a Crisis Counselor for Crisis TextLine.

How are you involved with self-determination? 

Sydney involved with self-determination by participating in activities with different disability advocacy organizations and making her own choices in life. She tells us that the best part of being an advocate is having a voice and being able to speak up for what’s not right. She also enjoys doing policy work.

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

The most exciting thing happening for Sydney is that she’s starting her own vlog on the Self-Determination YouTube Channel. She also recently became one of the hosts on the channel.

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

Sydney encourages people who want to be more self-determined to be aware of the different advocacy organizations. “If you aren’t already involved with them, to reach out to them,” she says.

What are some of your hobbies?

Sydney enjoys doing photography. She likes to photograph things like flowers and animals. She also loves taking care of her pets. She has 18 chickens, two cats, and a dog! 

***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: Kristi Scheunemann


By SD Network, 2021-07-13

Meet Kristi. This up-and-coming self-advocate has found her passion--disability advocacy. She has recently realized that her voice does matter and that she can make a difference in the world. She encourages others to “just go for it!”  We’re so fortune to have her as a member of the Network!       

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

Kristi is 30 years old and was born with Spina Bifida.  Due to this, she is paralyzed from the waist down. “Even though going through all of the medical issues associated with Spina Bifida hasn’t been easy, I feel like it has made me a stronger person and really what led to my calling to become a self-advocate,” she says. She has started joining different advocacy groups and is a Self-Advocate Leader with the Board for People with Developmental Disabilities (BPDD). She’s passionate about making this world more accepting and accessible to people with all different abilities.  

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

While Kristi is new to the Self-Determination Network, she has been in a few videos for the Self-Determination YouTube channel.  She joined the SD Network because she saw a post on Facebook from a friend, asking if anyone would be interested in answering some questions for an upcoming Member Spotlight.  She jumped at the chance because she wanted to get out there and share opinions on disability related topics. “Again, I feel like bringing awareness to different abilities and helping individuals overcome the obstacles that may arise is my purpose in life.  Everyone has a story and I want to help people tell theirs from a position of power and strength rather than a position of pity and others feeling sorry for them,” she explains. She points out a quote from Dr. Seuss: “Why blend in when you were born to stand out?” 

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

The best thing happening for Kristi is that she’s building up her self-determination skills.  She explains that she’s gradually learning how to make her voice heard and that the value of what she has to say. She tells us, “before joining all of these self-advocate groups I was shy and reserved.  I didn’t really give my feelings or opinions because I felt like no one was listening to me anyway so why should I bother?” In terms of self-determination, she’s learning that she does matter and she has the right and responsibility to get her thoughts and feelings recognized. “I’ve become more aware of the thought that if I don’t share my story, thoughts, and feelings, who will?” she says.       

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

The advice that Kristi would give to others who are looking to become more self-determined is; even though it will be scary and you’ll have doubts, just go for it!  She explains that if you don’t like how something in your life is running, let someone know who can help you make the changes you want.  “Yes, you may not solve the issue or get the exact result you wanted, but you will make it known that you do have an opinion and need to be asked about different choices rather than having someone just make the choices for you.  It’s your life, live it how you think is best for you,” she exclaims!

What are some of your hobbies?

Kristi likes going out with friends and scrolling through Facebook.  She also enjoys attending a Pound fitness class on Tuesdays and Thursdays.

***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: Renee


By SD Network, 2021-05-29

unnamed.jpgMeet Renee. This self-proclaimed “Benefits Nerd”  loves helping people with disabilities navigate their benefits and making them realize that they can work. She believes Self-Determination has multiple meanings in the Benefits Analysis world, and she has a multitude of knowledge about navigating the system. We are so fortune to have her as a member of the Network!

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

Renee has been working in the Disability field for about 13 years. She has been a Certified Work Incentive Counselor and Benefits Analyst and a Social Security Administration partner since 2013. She currently works with IBA Resources, LLC. in Wausau, WI and works with people of all ages and disability types.  She explains that she is a partner with the Social Security Administration and is trained by them to counsel individuals with Social Security and other Federal Benefits who also want to go to work. 

She loves talking with individuals and families who receive Social Security, Medicare, Medicaid, FoodShare, Veterans, and other benefits about how they can get a job in the community even if they are receiving those benefits! “I call myself a "Benefits Nerd" and am here to help if you are worried that getting a job will mean you will lose your benefits,” she exclaims!  

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

Renee shares that Self-Determination is so important in her field--being able to make good financial choices when you want a job and receive benefits is all about Self-Determination! Everyone should have input on what type of employment they want. Self-Determination can also mean having a goal of working off of Social Security or other Benefits. It is okay to want to work full time and there are many ways that goal can be achieved. To her, Self-Determination can also mean having all the tools and information you need to make the best choices in your life. She explains that knowing what type of Social Security or Health Care you have as well as knowing any other benefits you receive (for example FoodShare or Managed Care) and how these benefits are used is empowering information that can only help you with whatever goals you have. “That is the reason I joined the SD Network: Benefits knowledge helps tremendously with Self-Determination steps and goals,” she says. 

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

One of the biggest tools Renee seen created in the last couple of years to help with Self-Determination is the creation of the MYSSA accounts on the Social Security website (www.ssa.gov). She explains that creating one of these accounts can give the ability to report wages from work, request a new Social Security card, check your earnings record, change your address or phone number and many other things. This website saves everyone time, transportation, and phone calls to your local Social Security office. 

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

Renee encourages people not to be afraid to ask the big life goal questions if you receive Social Security or Medicare/Medicaid: Do you want to get married? Do you want to go to college? Or own your own business someday? Or work a full-time job? She says, “if you have a family member or loved one who is worried you will lose your Healthcare or Social Security, let's talk about how to keep those and reach your goals!”

She explains that everyone's Benefits puzzle looks a little different. What you can earn with work might be very different from a family member who also receives Social Security. Find out what the rules and safety nets go along with your own benefits!

What are some of your hobbies?

Outside of work, Renee is involved in the local Community Theater. She likes to direct plays and musicals. She also likes to play board games and travel around the U.S. She also has two very fluffy and naughty cats that she takes care of.

***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: Felicia


By SD Network, 2021-04-30

received_410324783524909.jpegMeet Felicia. This self-advocate has been proving doctors wrong since she was born. She has been involved in multiple disability advocacy boards and recently accepted a position as an Outreach Self-Advocate for an organization. She believes we can all make a difference in our communities and that it’s important to be a positive influence for others. We are so fortune to have her as a member of the Self-Determination Network.  

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

When Felicia was born, the doctor told her mom that she wouldn’t walk, talk, see, or hear, through therapy and hard work, she can walk, talk, see a little bit, and hear.  She shares that she was diagnosed at an early age with Autism. She was bullied throughout my schooling until she got into senior high school which led to having suicidal thoughts. However, she’s pleased to share that she battled through and graduated high school with a very high GPA. She no longer has suicidal thoughts either. After high school, she attended Milwaukee Area Technical College for awhile, but she had problems with Financial Aid. She then pursued a degree in Medical Coding and Billing from Milwaukee Career College. She finished the course, but due to financial issues, she never got her certificate.

From 2011 to 2014, Felicia was on a board called Transit Plus Advisory Council which is a council/board that advocated for people who were riding the paratransit program in Milwaukee called Transit Plus. She was the Chair for the Public Relations Committee of that board. In 2014, she helped out a friend get his online college and fellowship off the ground. She explained that she started out as a leader in the women's group and then she switched over to the foreign missions. She was made the CEO over North America and South America. In 2018, her friend passed away and that bumped her up to being the President and Chancellor of the online school and fellowship. She explained that the online school is a Christian oriented driven for people pursuing their calling.

In June 2013, Felicia started going to Wisconsin Lions Camp where she enjoys activities and help encourage other campers to go. In 2014, she went with a travel group out of Dane County as a travel chaperone.  She shares that she received a call from the founder of the group telling me that I could not come on anymore tours because she was disabled. So, from July 2014 to March 2017, she did research and started organizing her own travel group. In November 2016, she worked as an Intake Clerk for a friend’s her personal care agency until June 2017. In April 2017, I started founded Abilities Travel Club. Abilities which is a travel tour business that helps the community, travel lovers, people with disabilities, and seniors enhance Independent living skills while traveling. In 2019, she was a part of a board called Dreamability where we would help people with disabilities fulfill their dreams and goals; however, this group was disbanded due to the lack of participation and other issues.  In 2019, she was voted as the president of Across The Way - Christian Resource Center (ATW - CRC) which is a Christian Resource Center that gears children and families to provide Christian education. In March 2021, she was hired as an Outreach Self-Advocate for People First Wisconsin.

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

Felicia got involved with self-determination was she kept hearing the phrase “self-determination.” She wondered what was, so she attended some conferences related to self-determination and disability employment. At those conferences, she also kept hearing the phrase, “pursue your purpose,” and she asking herself how she could pursue her purpose. A green light went on for her when she realized she could use self- determination to help her do it. She joined the SD Network because she wanted to be around people who were self-determined like she is. She also wants to help others who don’t know what self-determination is so they can be like her.

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

Felicia wants to share that, even though people may have multiple challenges in life, there is still hope. In July 2019, she founded a Christian oriented interview podcast entitled, “Kingdom Hope Connections Radio Show,” and in October 2019, I presented using technology to be healthy at the Self-Determination Conference. She also presented at another conference about substance abuse. In October 2021, she will be a presenter again at the Self-Determination Conference.

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

Felica shares that, “you can make a difference in your community and be a positive influence to people around you.” A resource Felicia would like to share is the is Abilities Travel Club. Abilities Travel Club is a travel tour business based in Milwaukee, WI and provide travel services in the State of Wisconsin.  We have traveled to camps, conferences, restaurants, hotels and museums. She explains that they’re looking forward to traveling to various places in the Midwest and the United States. There’s no cost to join and the meetings are held via conference calls. To find out more information, you can email abilitiestravelclub@gmail.com or like Abilities Travel Club on Facebook.

What are some of your hobbies?

 Felicia says her hobbies are boating, bowling, cooking, fishing, singing, traveling, writing, and volunteering.

***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: Cynthia Sook


By SD Network, 2021-04-17

Meet Cynthia. Working to support people with disabilities for over four decades, she has seen many positive changes in the community. She encourages people to make use of the Aging and Disability Resource Centers (ADRCs). We’re so fortune to have her as a member of the Self-Determination Network!

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

Cynthia is an Information and Assistance/ADRC Specialist for the Aging and Disability Resource Center of Sheboygan County with a focus on serving adults with intellectual and development disabilities. She has been supporting people with disabilities for over 40 years. She explains that she remembers the days before the repatriation of individuals from ICFs-MR (now called ICFs-IDD) back to their home communities and nearer to family with work opportunities being mostly restricted to “Sheltered Workshops”. She worked at a camp during a summer during college that catered to people with I/DD and after college worked at two different privately owned ICFs-IDD in Milwaukee, a pre-vocational program then known as a Sheltered Workshop in a Milwaukee suburb, then a Case Manger for Sheboygan County Health and Human Services Developmental Disabilities Services (which included two years contracted to an MCO) and finally the ADRC of Sheboygan County for the past almost 12 years. “If someone asked me when I was 20 what my career would be, I NEVER would have thought, let alone answered, “to be a Social Worker focusing on people with I/DD”, she shares. She changed my major after the summer working at the camp.  

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

Cynthia joined the Self-Determination Network for a few reasons.  She doesn’t work in a major metropolitan area, so our resources are not as extensive as in other areas.  She explains that it can also be very insular since many employees from the different local agencies have been collaborating for at least two decades.  It is helpful to find out what other communities are doing that is positive or innovative and that maybe we can incorporate on a local level. Her work currently focuses on emerging youth with disabilities and assisting in the transition to adulthood. She shares that it is wonderful to see the generational differences. They have gone from trying to convince people that it is ok to make their own decisions and work towards their own goals to younger folks knowing that it is their right to do so. She also manages their agency’s social media, so she’s always looking for resources to share with others, even if they have to drive to access it.

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

Cynthia has seen many changes in the past 40 years from the attitude and actions of service providers and family caregivers, language and terminology, types of service provided, Long Term Care Funding and an almost total disregard of self-determination to the embracing of self-direction.  It’s not universal, there is still learned dependence amongst some people with I/DD and a tendency for some family caregivers to lean towards trying to block all risk for their loved one which is an obstacle to self-determination. 

She explains that she had to evolve as well and she clearly recalls participating in meetings in Milwaukee County where the county staff and residential providers made decisions about who had empty beds, who needed to move to make room for someone else and basically moving people around to make the system work rather than addressing individual preferences. She realized that the people she worked with in the ICF-MR and had referred for residential services had little to no chance to achieve their dream of moving out to a something more independent.

At the request of her then employer, she had also spent a few weeks with a journalist from a national magazine who was doing a series of articles about people in Wisconsin who lived with disabilities and how their wishes/needs/wants were or were not being met.  She introduced him to people with I/DD who wanted to tell their stories and helped him make connections in the community with involved agencies.  In reading his series, it was eye-opening for me to read things from the perspective of the interviewees. There were things that she thought were positive or showed progress that from the perspective of the person were not. 

“These were some of the events that helped me evolve as well as being able to observe the positive changes in lives of people who had been able to express their wants and needs and, in some cases, self-direct their funding,” she says. When she was a case manager, she really enjoyed helping people (and their families) realize and embrace their lives outside of large institutions when ICFs-IDD across the state were closed. “People moved from fear of the unknown and fear of risk to more fully embracing what the world had to offer,” she explains. 

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

Cynthia encourages everyone to use the network of Aging and Disability Resource Centers across the state. She explains that they are underutilized and ADRCs have or can find information about all kinds of resources. ABLE accounts and Special Needs Trusts are also underutilized.  She also firmly believes that when working with Long-Term Care funding, it is important to work with staff who have a knowledge base and experience in working with people with I/DD; although some skills are universal, it is a specialty and people should request a case manager or ICA who has this kind of experience.

She would also like to mention the movie, “Crip Camp.”  It’s a great documentary that really shows how a group of people living with disabilities started the self-determination movement in the 1970’s.

What are some of your hobbies?

Right now, Cynthia’s main hobby during the pandemic is contemplating and planning for her life after retirement. She really enjoys being by water.  “If you live in a part of the state that is not on a Great Lake, you really need to visit one because it is unlike anything else………except maybe the ocean,” 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.

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