Category: Member Spotlight
Meet Ashley. When she is not busy participating in Special Olympics or dancing with her friends, this vibrant young lady is out self-advocating! She encourages others to get involved also. We are so fortunate to have her as a member of the network.
What’s your story? Tell us a little bit about yourself.
Ashley is a 24-year old self-advocate diagnosed with PDD-NOS which is on the autism spectrum. She has a passion for advocacy especially in the area of employment. She does a lot of public speaking around the state of Wisconsin and has been featured on the TV, the radio and in the newspaper. She was diagnosed when she was in kindergarten and had to deal with extensive bullying in elementary and middle school. Ashley says that, “High School was a little better for me in the area of friends. There was less bullying but it was a huge challenge to fit in and manage the school work”. For that reason, she understands first-hand the challenges and painful experiences for people with special needs. She sees the great value in self advocating and leading a self- determined life.
How are you involved with self-determination? Why did you join the SD Network?
Ashley is on the Board for People with Developmental Disabilities and Executive Committee for People First. She first learned about self-determination when she attended the JumpStart! Program at Nicolet College. She took several classes in this program and learned how to advocate for herself. During that time, she started Partners in Policy Making and started developing a network. She indicates that Disability Advocacy Day, in March, and the Self Determination Conference are both great opportunities to meet people who are self advocates and learn more strategies about living a self-determined life.
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 Ashley right now is the Self-Determination Channel. She says, “I love making the videos and educating our audience. I encourage everyone to subscribe to this channel.”
What tip or resource would you like to share with people who want to be more self-determined?
Ashley has several tips to share:
- You are going to have people tell you in life that you cannot do something due to your disability....you need to prove them wrong every time. Anyone can do anything they put their mind to.
- You own your journey and your limits so, put your best effort in on everything you do.
- Don’t let your disability define you. For example, she is not Autism....she is Ashley Mathy. Be proud of who you are.
- You need to have the dignity to fail which means you are going to fail at some things but its important to get back up and learn from your mistakes. It’s ok to fail.
What are some of your hobbies?
Ashley loves to be in Special Olympics in her spare time. Her favorite sport is track, but she also participates in bowling, bocce, and snow-shoeing. Also, Ashley love to go horseback riding and takes advantage of every dance she can go to. She loves to dance with her 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.
Meet Mary Clare. She’s a life- long Wisconsinite, from the south-eastern part of the state. She has worked as an advocate for individuals with disabilities for most of her career. She has seen self-determination grow for people in our state over the years and looks for this trend to continue upward. We’re so fortunate to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Mary Clare loves telling stories but struggles when asked to talk about herself. She has lived in Wisconsin her whole life. She grew up in rural Kenosha County, moved to Milwaukee to attend Marquette University and then made Milwaukee her home ever since. She has worked in disability advocacy, person-centered planning and grassroots community building for most of her adult working career. She feels blessed to have had many amazing teachers along the way like John and Connie O’Brien, Beth Mount, Pat Beeman, Herb Lovett, and Cindy Bentley to name just a few. She also loves connecting people, resources and ideas. She has been doing this work around Wisconsin for a very long time. She loves what she does and still finds that she is learning something new everyday along the way.
In the spirit of self-determination, she is going to share something with you and all the readers that she has not shared widely before, She says. “I am a person who has struggled with mental health for much of my adult life. Self-Determination then is not only something that I feel passionately about in my work, it’s something I need to own personally.”
How are you involved with self-determination? Why did you join the SD Network?
Mary Clare believes that self-determination needs to be at the heart of everything we do in long term care in Wisconsin. She feels that being involved in the Self-Determination Network is a great way to stay ‘heart-centered’. She has been involved with People First Wisconsin since it’s founding in 1999, first as a staff person and now as an ally. In her current position at My Choice Family Care Wisconsin, which is an MCO, she works to connect their members with opportunities and resources to help them explore self-determination.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Mary Clare explains that there is lots to be excited about when it comes to self-determination in Wisconsin. She just mentions three ideas for our readers here:
- Mary Clare explains, “The recent development of the Self-Determination Channel on YouTube is her first bit of exciting news.” She loves it and is a big fan!
- Secondly she loves watching established self-advocacy leaders like Cindy Bentley mentoring and passing the leadership baton to younger leaders like Ashley Mathy.
- Finally, she sees self-determination moving ever closer to becoming the ‘default setting’ of everything people are trying to do in Wisconsin. She feels that we are starting to see people with disabilities no only be welcomed to the planning table, but often taking their rightful place at the head of the table.
What tip or resource would you like to share with people who want to more self-determined?
Mary Clare shares that, “Everyone has gifts. Everyone has something to contribute and offer. Everyone has things they care about deeply that motivate them to act.” She wants you to discover what your unique gifts are. She indicates that if you are not sure where to start, ask some one you trust to help you with your discovery process. Be bold and put those gifts into action! It will not only help you to live a more self-determined life, it will help build community and encourage others to live a more self-determined life as well.
What are some of your hobbies?
Mary Clare loves exploring art of all kinds but is especially passionate about her digital photography. She enjoys walking and hiking. She also loves thrift shopping and up-cycling. She explains that up-cycling is the art of creative reuse where you transform old, discarded and unwanted items into something new, useful, and beautiful.
***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.
Meet Lisa. When she's not reading or styling women in her boutique, she’s helping veterans get appropriate services. She is excited that their programs continue expand making it possible to serve more people. She encourages people to ask for the services they need to lead a self-determined life. We’re so fortunate to have her as a member of the Network!
What's your story? Tell us a little bit about yourself.
Lisa has been the VA Programs Manager for the Greater WI Agency on Aging Resources, Inc. (GWAAR) for over 10 years. She went to GWAAR in 2010 after working in Child Welfare in Milwaukee in positions of both Quality Assurance Manager and Ombudsman. She has also worked in various positions serving children and families.
How are you involved with self-determination? Why did you join the SD Network?
Lisa oversees the Veteran Self-Directed Program. She explains that they currently partner with the Clement J. Zablocki in Milwaukee, the Tomah VAMC, the William S. Middleton Memorial Veterans Hospital in Middleton (Madison), and the Captain James A. Lovell Federal Health Care Center in North Chicago, serving Veterans in each of their catchment areas. Based on a thorough assessment, the Veteran Self-Directed program allows for Veterans to determine their services and caregivers to meet their needs and live as independently as possible. “We joined the SD Network years ago to connect with others and to hear new and creative ways participants are being served,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Lisa shares that GWAAR is excited to continue to grow and to potentially expand the number of Veterans they are able to serve. They started out back in 2010 with a grant to be able to serve 25 Veterans enrolled at the Clement J. Zablocki VAMC in Milwaukee who resided in four counties in Southeastern WI. They were able to expand to include the entire catchment area. She explains that they added Tomah in 2015 and served their entire catchment area. In 2016, North Chicago asked them to serve Veterans who were enrolled at their VA and resided in WI. And just last year, they were able to implement a program in Madison. They currently serve 110 Veterans and continue to work to expand the program statewide.
What tip or resource would you like to share with people who want to be more self-determined?
One tip Lisa has for people who want to be more self-determine is: “don’t be afraid to ask for something you want/need as related to your assessed needs that could enhance the quality of your life.” She says that so many people think of every day services such as person care and supportive home care. While those are often needed, they have been able to provide Veterans with quality of life resources/activities including additional caregiving for vacations and family activities.
What are some of your hobbies?
Lisa is an avid reader and is currently in two book clubs--one for over 21 years. She also has a passion for fashion, so much so that she owns her own women’s boutique. She brings her skills there in helping women feel beautiful and confident. “Both qualities that help with self-determination to live the best life possible,” she 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.
Meet Cindy. This amazing self-advocate has used self-determination to get her where she is today. She believes everyone should be able to voice their opinions and needs regardless of their abilities. She encourages everyone to exercise their right to vote. We are so fortune to have Cindy as a member of the Network.
What's your story? Tell us a little bit about yourself.
Cindy is a self-advocate and the Executive Director of People First of WI. She has come a long way from her start in an institution. She explains that she had a guardian that advocated for her! The guardian helped her to get out of the institution and helped her become her own guardian. Why was this important? Because she wanted to vote!! “When we went to the courthouse to get my self-guardianship, the judge agreed and also advocated for me to become my own guardian. So, I feel the need to pay it forward with my work in People First of WI and advocate for others,” she says.
How are you involved with self-determination? Why did you join the SD Network?
“I want to be able to speak up for myself, I want to do my own thinking and not have others speak for me. It’s the same reason for myself advocacy and assisting others to advocate for themselves,” Cindy says. She feels that people with disabilities should be able to voice their opinions and needs--just like everybody else.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Cindy thinks people have more of a voice now. People are listening to people with cognitive disabilities more than ever before. She recently took Secretary Palm of DHS on a tour to showcase people with significant disabilities that successfully live in their community. “The Secretary came on the tour and listened to my input regarding the advantages of community living as opposed to living in an institution. She followed up with a thank you card - that’s exciting,” she exclaims!
What tip or resource would you like to share with people who want to be more self-determined?
Cindy encourages people to get out and exercise your right to vote! She explains that many decisions that lawmakers need to make can affect people with disabilities. “You can’t complain if you don’t vote,” she says. She also wants to remind people that this year it is important to be counted in the 2020 Census.
What are some of your hobbies?
Cindy loves snuggling with her kittens. She’s an avid sports fan, and she loves watching and participating in all sports. She also enjoys reading magazines and watching TV.
***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.
Meet Barbra. This worldwide traveler believes that people with disabilities should make their own choices and live their most meaningful lives--just like people without disabilities. She’s excited that self-determination is being talked about more and more. We’re so fortunate to have this strong advocate as a member of the Network!
What's your story? Tell us a little bit about yourself.
Barbra was born in Brooklyn New York and has lived in the Washington DC area and Minneapolis before coming to Madison in 1991. She loves living in Wisconsin! She’s married and is the mom to three wonderful adult sons. She also has a very active eight-month-old puppy. She shares that her middle son, Ben, has a developmental disability and continually informs her as she lives and works as an advocate alongside him.
How are you involved with self-determination? Why did you join the SD Network?
Barbra believes that people with disabilities should make their own choices and live their most meaningful lives--just like people without disabilities. She explains that to her, that is the core of self-determination. “While it makes perfect sense and sounds so simple, often services, supports and programs that people with disabilities depend on get in the way,” she explains. For the past 15 years, she has worked as Co-Director of Family Voices of Wisconsin, ensuring that individuals and families know how to access, navigate, use and advocate within programs for health care and long term supports. If people have this knowledge, it can help them as they create self-determined lives for their children and for themselves. She joined the SD network so that she can be up to date on opportunities to advance SD in Wisconsin and learn about how others live self-determined lives.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
For Barbra, the best news is that people are talking a lot about self-determination and they’re seeing growing numbers of people living self-determined lives. “Wisconsin has amazing Medicaid long term support programs for children and adults, like the Children’s Long Term Support Waiver and IRIS, that promote and support living meaningful, self-determined lives,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Barbra would like to share a new fact sheet, “Self-Determination and Children with Disabilities” that Family Voices of Wisconsin recently published. You can check it out here. It is never too early to start practicing self-determination!
What are some of your hobbies?
In her spare time, Barbra loves to travel, spend time with her family and friends and read books — she tries to read at least one book a week. She has been fortunate to travel to 35 states, Canada, various islands in the Caribbean, Mexico, England, Germany, Belgium, Luxembourg, the Netherlands, the Czech Republic, France, Italy, Spain, Portugal, Switzerland, Austria, Turkey, Israel, Greece, Jordan, Argentina, Uruguay and will be traveling to Japan in May.
***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.
Meet Phillip. This Oscar trivia extraordinaire has become more involved in self-determination in recent years. As a host of a YouTube Channel, he enjoys being able to share his experiences with others. He encourages people not to be afraid to advocate for himself/herself. He believes everybody should be able to express their feelings and that communication is key. We’re so fortunate to have Phillip as a member of the Network!
What's your story? Tell us a little bit about yourself.
Phillip lives in Madison, Wisconsin. He is a Clerical Assistant at TMG, and has worked there for almost seven years.
How are you involved with self-determination? Why did you join the SD Network?
Phillip is one of the hosts of the newly launched Self-Determination Channel, and he’s also a Buddy Director for his local Best Buddies chapter. He explains that all of this has helped him become more involved with self-determination and being a better advocate for himself and others. He joined the Self-Determination Network to meet others in the disability community, in order to create new friendships and create change in the world. “We all are capable of bringing change, one connection at a time,” he says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
For Phillip, the most exciting thing in Self-Determination that’s happening in Wisconsin right now is the Self-Determination Channel. He feels it gives advocates an outlet or a platform to share their experiences or a story with others who are going through the same thing. He explains that they are looking for others who are interested in having a video on the Self-Determination Channel. “We’d love for you to share your story,” he exclaims.
What tip or resource would you like to share with people who want to be more self-determined?
A tip that Phillip would like to share with someone who wants to lead a more self-determined life is to never be afraid to advocate for yourself. “As people with disabilities we are the best at knowing what we want in our lives and when we need to ask for help. Do not be afraid of saying no and expressing how you feel if someone makes you feel uncomfortable or tries to control what you do, you know yourself best and communication is always the key,” he explains.
What are some of your hobbies?
Phillip enjoys reading, writing, getting together with friends, traveling, and watching movies. “If you ever need someone to help with Oscar trivia then I’m your guy,” 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.
Meet Tasha. As someone who has always wanted to make a difference in her community, she has worked with multiple groups of people who are in need. Her current job has made her realize how important self-determination is for everyone. She is very excited about what her agency has done this year. In her spare time, this avid sports fan loves to spend time with her son and hang out with friends. 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.
Tasha graduated from college with a Bachelor Degree in Human Service, and she knew right away she wanted to make a difference in her community. She explains that she has worked to help the undeserved community with getting health insurance and benefits. She has also worked with family caregivers to be able to get the supports that they needed to keep their love ones at home and to live safe and meaningful lives in their home. Currently, she works for TMG as a Community Partnership Specialist, which gives her the opportunity to work with organizations to help provide resources and services to individuals on the IRIS program.
How are you involved with self-determination? Why did you join the SD Network?
Tasha became involved with self-determination after she started working in her current position where she was able to see first-hand how important self-determination is to everyone. She’s involved on many committees that work together to help find solutions to many obstacles, such as transportation, housing, poverty and employment. “After attending three SD Conferences, it became a passion of mine to be more involved in the SD Community and help wherever I am needed,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Tasha shares that she’s super excited about the work she and her coworkers have done in 2019. She explains that TMG has hosted four events in three Wisconsin counties that invites IRIS participants and their family and friends to a fun and/or local community location to get information from vendors regarding programs and services they can utilize. They provide free food, door prizes and networking with others. “It is a way for TMG to clear the path and bring all resources to one place. We are looking to do even more of these events in 2020,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Tasha suggests there are so many amazing resources in the Community that can help a person become more self-determined. It is great to visit your local libraries, community centers, ADRC’s and churches just as a starting point. She explains, “from there, a person can become more educated, empowered and energized on the many different programs and services that are out in their community.”
What are some of your hobbies?
As a single mom, she doesn’t have a lot of time on her hands; however, she loves spending time with her nine-year-old son, Tyler. She enjoys going to the movies, hanging out with friends, and watching ALL Wisconsin sports teams--especially the Green Bay Packers. “Go Pack Go,” she exclaims!
***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.
Meet Jean. When she isn’t busy watching Ice hockey, she loves to travel and spend time with her grandchildren. With a lengthy résumé highlighting her advocacy efforts, now retired, she continues to help write the story of the revolution in disability access, rights, and choices. She fully believes it the power of networking. We’re so fortunate to her as a member of the Network!
What's your story? Tell us a little bit about yourself.
An account executive at a major public relations firm and publicist for two Wisconsin rehabilitation centers, Jean was recruited in 1969 as a volunteer by the National Spinal Cord Injury Assn/Milwaukee; an event that changed her life. She has lengthy experience in addressing the rights of people with disabilities to live successful lives in the community. As a volunteer with the Milwaukee Chapter of the National Spinal Cord Injury Association, she led Wisconsin efforts to incorporate accessibility into the statewide building code in 1973-76 and served as chair of the DIHLR building code committee when it completed a complete revision of the statewide code. She was also involved in the landmark court decision Barthel vs. Biernat in 1976 that was the first in the nation to prohibit a public transit system from purchasing new inaccessible buses until they had adopted a plan for serving the transportation disadvantaged. She was appointed by County Executive Bill O’Donnell to the board of directors of the Milwaukee County Transit System after that litigation was settled to provide oversight as the transportation services were developed and funded. During the late 1970s, she represented NSCIA on the state-level planning committees for the development of the Community Options Program (COP). In 1981, she joined the management team of former state representative James Wahner at the Milwaukee County Department of Health and Human Services. In that capacity, she was the team leader for Milwaukee’s implementation of COP for all populations. In addition, she co-chaired a Wisconsin statewide task force in 1987-88 that planned for the evolution of county nursing homes for people with serious mental illnesses following a US Supreme Court decision disallowing federal Medicaid funding for such facilities. She was the CEO/founder of Strategic Partners from 1991- 2019, a public services redesign firm. In that role, she has participated in projects relating to disability in Florida and Georgia.
As a retiree, Jean has seized/assigned/been recruited for the opportunity to write the story of the great Wisconsin revolution in disability access, rights, and choices that she, Dan Johnson, Ellen Daly, Mike Falconer and many others witnessed and fostered between 1965 and 1990. She explains that their thesis is simple and clear: Pre-ADA, Wisconsin led the way. Their website is www.Wisdisabilityrights.com. The Facebook page is Physical Disability Community-Wisconsin. “Both still need ongoing work,” she admits.
How are you involved with self-determination? Why did you join the SD Network?
Jean joined the Network in 2015 when she was working with ERI and Dan Johnson to organize the logistics and content for a memoir. They were also pulling together Wisconsin's response to ADA's 25 anniversary. She was involved in self-determination before there was a name for it. When they implemented COP in Milwaukee in 1984, consumer-directed care was the goal from the beginning. She explains that now, Electronic Visit Verification (EVV) is a major challenge, but Wisconsin has been given an extension. “Hopefully, they will get it right,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Jean states that Wisconsin has much better resources to support self-determination that most states. “IRIS is a national leader, and the work that Lynn Breedlove is doing internationally to spread the word and share information with countries in Europe is amazing,” she says. She also comments that consumers are now very sophisticated advocates. She believes that the efforts in 2018 when Congress was considering repealing the ADA were first class and very successful. She says, “it was the disability lobby that won that fight.”
What tip or resource would you like to share with people who want to be more self-determined?
Jean is a firm believer in networking. “It takes a village, so it is critical to network and spend time with other people who are in charge of their own care. Today, there are online forums and internet resources that didn't exist in the 1980s and early 1990s,” she explains.
What are some of your hobbies?
Jean is a big ice hockey fan. She loves to travel (she went to Scotland for three weeks this summer after working to improve her physical condition for a year) and loves spending time with her grandkids (both in high school). She’s a member of the board for her condo community and she has learned a whole lot about land use and overdevelopment as a result.
***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.
Meet Roxanne Price. When she isn’t traveling around the world, spending time with family and friends, reading, or gardening, she works with people teaching them about Self-determination and Self-Directed Supports. She has always been very passionate about Self-Determination and Self-Direction. She encourages people to ask questions and be clear about what you want. We’re so fortunate to have Roxanne as a member of the Network!
What's your story? Tell us a little bit about yourself.
Roxanne is very passionate about Self-Determination and promoting Self-Directed Supports! She explains that it has been her primary focus since 1998, when she was hired as the Self-Determination Project Coordinator in La Crosse County back when Family Care was first getting started. La Crosse County was one of the five Family Care pilot counties in Wisconsin. She participated in many meetings and discussions with self-advocates, their allies and many others to make sure that Managed Care in Wisconsin emphasized personal choice, responsibility and empowerment. “People didn’t like the idea of being “managed” and we didn’t want the program to become an impersonal, “one size fits all” approach to assessing needs and providing supports for people,” she says. Since her position was funded through a Robert Wood Johnson grant, when the grant ended, she was hired as a Care Manager with the Family Care Program in La Crosse where she continued my involvement in Self-Determination and Self-Direction. In 2008, the La Crosse Program expanded to include seven additional counties and they became known as Western Wisconsin Cares. She says that even though she misses the ongoing connections that she had when she was a Care Manager, she was excited to be hired as the Self-Directed Supports Coordinator for the eight county regions. So, for the past 11 years, she has been focusing exclusively on Self-Determination and supporting the successful use of Self-Directed Supports. Two years ago, three Family Care Organizations merged into the organization that is now known as Inclusa. “I think we are very fortunate to have a dedicated SD/SDS team that provides education and support throughout our service regions and I love being able to follow my passion with others who feel the same way,” she exclaims!
How are you involved with self-determination?
Roxanne is currently one of the SD/SDS Managers at Inclusa. Inclusa is one of Wisconsin’s Family Care Organizations and covers much of the state. She helps members (clients) and their Care Management teams learn about Self-Determination and Self-Directed Supports, and she helps them decide how to set it up so it best fits their individual strengths and needs. Also, when there are problems or concerns, she gets involved to help figure out the best solutions.
Why did you join the SD Network?
Roxanne says that she is always looking for the latest information about Self Determination and Self-Directed Supports and she knew that the SD Network would be a good resource!
What tip or resource would you like to share with people who want to be more self-determined?
Roxanne encourages people to be clear about what you want and don’t be afraid to ask questions to be sure you understand things! She says to try to be respectful even if you disagree with what someone says and ask for support when you need it. “Finally, it’s ok to make a mistake – sometimes it’s the best way we learn! Nobody is perfect,” she says!
What are some of your hobbies?
Roxanne loves to read! True stories are especially inspiring to her. She also really enjoys taking pictures of people, places and things. In the spring, she likes to work in the garden – even pulling weeds! She explains that her friends and family are very important to me and she spends a lot of time with them. Recently, she has gotten brave enough to travel to other countries and that has really been exciting her!
***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.
Meet Lydia. This college senior is determined not to let anything stop her from achieving her goals! She has done all sorts of amazing things with assistive technology and hopes to help students with disabilities discover how it can help them. She believes it’s so important to advocate and show the world what people with disabilities can do. We’re so fortunate to have Lydia as a member on the Network.
What's your story? Tell us a little bit about yourself.
Lydia is a 22 years old senior at University of Wisconsin-Whitewater. Her major is Liberal Studies with special interest in Communication Sciences and Disorders and Special Education. She hopes to be an assistive technology specialist. She wants to figure out what and how students can use technology. Her goal is to have a clinic where there would be an assistive technology specialist, occupational therapist, speech-language therapist, and physical therapist. She explains that she wants to have a place for people with disabilities to go and get resources where everyone is on the same page.
Lydia is from Decorah, Iowa which is 3 1/2 hours away from Whitewater. She graduated from high school in 2015, and she was the first high school student in Iowa to participate in individual and large group speech competition who used an augmentative communication device. Since her junior year in high school, she has been an ambassador for Prentke Romich Company. She explains that they have communication devices and apps, and she goes around the Midwest to conferences talking about her experiences and about the app LAMP Words For Life.
This summer, Lydia is an intern at Access to Independence in Madison where she helped with the peer support program. Now, she helps teach classes at colleges about what resources there are in college for people with disabilities.
How are you involved with self-determination?
When Lydia lived in Iowa, she spoke at events to help inspire others to advocate for themselves. “I think that is important” she says.
Why did you join the SD Network?
Lydia explains that she believes it’s important to advocate and to bring awareness to the world, so that people with disabilities can be seen as people first and allowed the same opportunities as everyone else.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Since she’s planning to graduate from Whitewater in May, Lydia is applying for grad school at UW-Stout for Rehabilitation Counseling Program, and she explains how it’s kind of stressful because she has to pull all of the items they need. She’s also applying for an Assistive Technology Certificate at the University of Illinois in Chicago; she wants to have enough creditability to work with people with disabilities because she’s afraid that parents won’t want their kids to see her.
Lydia is also excited that she recently got a job offer from Control Bionics to be a freelance writer for them. She’ll start writing about clients that use their device. She explains that the device is a patch that can be placed anywhere on the body and when the muscle contracts, it clicks on the device with the scanner feature.
What tip or resource would you like to share with people who want to be more self-determined?
Lydia encourages people to not be afraid to “beat to your own drum” and ignore the people who say that you can’t. “I can’t tell you how many times people said I couldn’t do something, and I just ignore them because I know that they don’t know me. I know myself so if they don’t want to help me, it’s okay,” she explains.
What are your hobbies?
“I guess I don’t have any hobbies, I’m just a “typical” college kid,” Lydia jokes. She says she’s on social media all the time, and she likes to binge watch things on Hulu and Netflix. She points out that when she’s in school, she’s too busy with homework or work to do anything.
***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.