Category: Member Spotlight
What's your story? Tell us a little bit about yourself.
Jenny grew up in Madison and attended the University of Wisconsin – Madison. She has always been interested in marketing, and in the local nonprofits in the area. She volunteered with Olbrich Gardens for a while, interned at the Aldo Leopold Nature Center. In 2014, she joined the board of Fishing Has No Boundaries – Madison Chapter, where her passion for the disability community grew, and have recently been elected Co-Chair! A few years later, she was hired at Community Living Connections (CLC) in 2016.
She explains that CLC is a nonprofit which supports individuals with intellectual/developmental disabilities, physical disabilities, and frail elders to live as independently as possible, in their own homes. They provide support that enables people to live in their own homes and participate in community life. They provide in home staff to help with planning, personal cares, medical support, finances, relationship building, etc… She is the Development & Community Relations Manager. She coordinates their communications such as the Facebook and Instagram accounts and eNewsletters, assists with recruitment, and manages their fundraising efforts.
How are you involved with self-determination? Why did you join the SD Network?
Jenny joined the SD Network when she started at CLC. She didn’t know about the network until she started working there. “I’m glad I did, it is a great resource and I really appreciate getting the emails,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jenny is thrilled that Community Living Connections is growing! They are SO exciting to be expanding their service area to support individuals who live in the communities of Beaver Dam and Platteville She explains that they want to help more people live independently in their own homes and self-directing their own lives, and they’re thrilled to be making that happen!
What tip or resource would you like to share with people who want to be more self-determined?
Jenny shares that in Marketing they say it takes someone seven times to hear the message, before they actually hear it, absorb it, and act upon it—so, don’t be afraid to repeat yourself! She explains that other people may not fully understand your message the way you mean it the first time around. “Advocate for yourself, repeat what you want and what you need, and say it in as many different ways as you can,” she exclaims!
What are some of your hobbies?
Jenny loves to garden! She and her husband bought a house in Oregon and she has been slowly growing the garden to be her little outdoor oasis. She’s a big reader, and is in a small book club with a few friends. She also loves camping and being outdoors--like walking through the Arboretum, or lying beside Devil’s Lake with a good book in hand. She says she doesn’t know how to fish, but every summer, her favorite weekend is in July with Fishing Has No Boundaries in Madison! “It is so much fun, and everyone who comes (both volunteers and participants) is so excited for a weekend of accessible fishing,” 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.
What's your story? Tell us a little about yourself.
Marilee was born and raised in Stevens Point, WI. Born with something called Tetra-Amelia, she’s missing all four limbs, but that doesn’t stop her. She tells people, “don’t feel sorry for me. I don’t know what it is like to have arms or legs, so I’m not missing anything!”
After high school, Marilee went to UW-Whitewater where she earned a degree in Graphic Design. She explains that her experience in college was great. She had personal care workers that assisted her and it was the first time she was able to live independently. It was in college that she got involved in advocating for disability rights. She connected with a national advocacy group called ADAPT. ADAPT is a national grassroots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. She also became involved in the Independent Living Council of Wisconsin where she served as the Council’s Secretary and Chair of the Membership Committee. She and her husband have attended several national rallies. They co-founded Central Wisconsin ADAPT. She’s very proud to be National ADAPT’s Media Chair and an ADAPT member!
Marilee owns her own business called Adamski-Smith Multimedia Solutions. Through her business, she provides a host of services. She can design and create logos, business cards and brochures; make slideshows, do video editing and DVD authoring, photo restoration, DVD conversion, website design and hosting. She really enjoys owning her own business.
Currently, Marilee and her husband live in Brookfield Wisconsin, and in the very near future, and they also plan to design and build a universal design home. They hope to start a family soon. Her disability does not define her. She says, “I am a wife, business owner, sister, Godmother, Aunt, and a great friend. Who knows where life will take me next; I am so thankful for all the experiences that I went through in my life. If I didn't have the experiences that I did, I wouldn't be the person I am today and it all started with how I was brought up by my parents and the help of self-directed services that allows me to live independently in the community, in my own home. They have shaped me into the person I am today!”
How are you involved with self-determination?
Marilee explains that her parents taught her to always believe in herself and that if she set her mind to some goal that she can achieve it. One example of this was: after graduating from college, she had worked for a couple of different graphic design companies, but she felt that she was not being challenged and at times the opportunities were less. So, she decided to start her own graphic design business, Adamski-Smith Multimedia Solutions.
Why did you join the SD Network?
Marilee joined the SD Network mainly to network and get to know people. Being part of the Self-Determination Network allows her to connect with other people that have disabilities that want to live independently in the community. “Being part of all of these different organizations, I have had the opportunity to meet with different Senators and Legislators at the State level and in Washington DC to advocate for disability rights,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Recently, Marilee has had to scale down on my graphic design business because she has an increasing larger role in ADAPT. One of the primary things they are focus on is to pass the legislation - Disability Integration Act (DIA). She explains that the DIA is civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports LTSS are forced into institutions and are losing their basic civil rights. The DIA is intended to assure that people with disabilities can live in the community rather than be forced into nursing facilities and other institutions. This groundbreaking legislation establishes statutory civil rights language - comparable to the ADA - which requires public entities and Long-Term Service and Supports insurance providers to change their policies, provide community-based services first, and offer Home and Community-Based Services (HCBS) to people currently in institutions. This legislation builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities HCBS as an alternative to institutionalization.
She’s very excited about this legislation because it will be the next big step in disability rights since the ADA and it will give people with disabilities the right to choose to receive long term care in their own home and community settings instead of being forced into nursing homes. “For people like myself, having this right means many other opportunities open up. We can choose where they would like to live, go to school, get a job, etc.,” she says. She’s looking forward to being part of this history as they’re working hard to get this legislation passed this summer in the House. If people would like to participate in this effort she has many ways in which everyone can help. If you would like to help please email her.
What tip or resource would you like to share with people who want to be more self-determined?
Marilee encourages people to never give up and reach out to your support networks. She explains that there will be obstacles in life, but you can find allies in your journey who can help you get back up when facing an obstacle. She notes that the SD network is an example of allies.
She also encourages people to get involved in disability advocacy and join organizations and groups that help people with disabilities live an independent life. “ADAPT, WBPDD and the SD Network are great organizations and groups that believe that all people with disabilities should be treated as equal as non-disabled people,” she says.
What are some of your hobbies?
In her free time, Marilee likes to go camping and geocaching. Every summer, she tries to pack in at least six camping trips. She also likes to cook new recipes, go swimming, do jigsaw puzzles, going to the movies, theater plays and concerts. She loves spending time with family and friends as well--especially her husband, Joseph and two god children, Avery and Cole!
***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.
What's your story? Tell us a little bit about yourself.
Don is the proud father three adult children—two boys and a girl. He has a Bachelor of Science degree in Chemistry and a Master’s degree in Biochemistry, but, after volunteering for seven years with the organization, in 2010, he became the Vice President of Sports & Health Programs with Special Olympics Wisconsin. He made the switch to the non-profit to make an impact in the lives of people with disabilities. His middle child, Tyler, is a Special Olympian.
Tyler lives independently in a condo with the assistance of a part-time caregiver. He works in the online ordering department at Woodmans. He participates in Special Olympics and has competed in over nine sports including track, bowling, alpine skiing, basketball, softball, soccer, volleyball, tennis, and flag football. He went to the 2014 Special Olympics USA games and won a gold medal on the state flag football team. As the Special Olympics Wisconsin Health Leader and Global Ambassador, he promotes healthy lifestyle and spreads the positive message of Special Olympics. He has raced in multiple half-marathons (best time 1hr 36min) and one full marathon (3hr 39min). He has competed in world level competitions in track (Ecuador) and half-marathon Portugal) and is currently training for the World Track & Field Championships for athletes with intellectual disabilities in Australia this October.
How are you involved with self-determination? Why did you join the SD Network?
Don shares that he has always been a strong proponent of finding ways for individuals to help create and fulfill their life dreams. He explains that he and his wife raised Tyler in a way that they were always preparing him to be able to live on his own, and their school district did a very good helping Tyler learn work skills that transitioned in many years at Panera Bread and now Woodman’s. “Tyler loves being productive and bring home a paycheck. He had been planning on moving out for several years and last October that dream because a reality,” he says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Don is extremely proud that Tyler is living on his own. He explains that young adults of any ability dream of moving out from mom/dad’s house and living independently. Young adults with disabilities are no different.
For Tyler, the Paralympic running experience has been pretty exciting. He is able to travel on his own with the USA Team.
What tip or resource would you like to share with people who want to be more self-determined?
Don encourages parents not to treat your child different just because they have a disability. He says to push them and help them grow to be productive members of society that will someday not need mom or dad. “That is hard as parents. Especially when you have a child with a disability. Also help prepare them for life without you,” he says.
What are some of your hobbies?
In his free time, Don enjoys reading, doing crosswords, hiking, and watching sports. When Tyler isn’t busy working or training, he enjoys watching sports and hanging out with 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.
What's your story? Tell us a little bit about yourself.
Ginger was born with cerebral palsy. Her parents started advocating for her at a young age. She explains that as she grew up, she learned why it was important to advocate for things that would make her life easier and better. She is a very independent woman who lives in her own apartment with staff that comes in a couple days a week to help her with things that are hard for her to do.
How are you involved with self-determination? Why did you join the SD Network?
Ginger joined the Self-Determination Network so she could use it as a resource for her local People First group. She also as a tool in her own life.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Ginger explains that there are a couple things in Wisconsin that are great news to anyone with a physical challenge or intellectual challenge. The first thing is that last year Governor Walker signed a bill to make Supported Decision Making as an option to Guardianship. The second is that Governor Evers has signed Executive order #11 to create a task force to help caregivers in Wisconsin.
What tip or resource would you like to share with people who want to be more self-determined?
As Vice President of People First Wisconsin, Ginger knows everyone has the chance to start living a self-determined life. “Even if it is as simple as picking out the clothes that they want to wear that day,” she explains.
What are some of your hobbies?
Ginger is an avid sports fan. She loves watching Wisconsin sports teams—especially the Milwaukee Brewers, Green Bay Packers and the University of Wisconsin football. She also enjoys doing a lot of jigsaw puzzles and loves coloring in adult coloring books.
***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.
What's your story? Tell us a little bit about yourself.
Hunter is 26 years old. He was born three months premature in Milwaukee, WI. He has Cerebral Palsy and is considered a quadriplegic. He uses a wheelchair to get around and has a visual perception deficit. He has a brother adopted from Vietnam who has a hearing impairment and an intellectual disability.
Currently, Hunter lives in Wausau, WI in his own apartment with his cat, Sully. He lives independently with the help of a team of caregivers, including his mom. He uses an emergency alert system for added safety.
Hunter is the owner and author of www.comerollwithme.com. He has been working hard to become a professional blogger and advocate for individuals with disabilities. He would like to expand, becoming a public speaker soon.
How are you involved with self-determination? Why did you join the SD Network?
Hunter explains that his IRIS consultant, Jennifer, told him about the Self-Determination Conference in Wisconsin Dells this past October. He went as a vendor, promoting his blog and selling “Super Power” T-shirts. He wanted to also learn about others with disabilities to make him a better advocate.
Hunter lives in a building with other individuals with disabilities, but they are all much older than I am. He says the conference opened the door for him to meet others his age with disabilities. “It reminded me that I am not alone. I connected with some incredible people,” he explained. He joined the SD Network to continue connecting with other individuals with disabilities.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Becoming a member of the SD Network is exciting for Hunter! “I am hoping to meet new people and develop friendships,” he says.
Professionally, Hunter excited to have Virginia and Scott Steuck join the Come Roll With Me team. They will be helping him with marketing and expanding his reach. He’s excited for the growth and expansion of his blog and website.
What tip or resource would you like to share with people who want to be more self-determined?
Hunter explains that even though it may take a while, continue to look ahead. Being independent takes self-determination. However, it is a process. If you are working toward a goal, you are a success! Slow and steady wins the race. Obstacles are a part of living with a disability. Don’t let frustration cloud your view. Take a step back and figure out a strategy to make things fall into place. “Most importantly, never EVER give up,” he exclaims!
What are some of your hobbies?
In his free time, Hunter can be found on his computer or in front of his PS4. He also loves watching sports, including football, baseball, and wrestling. In the summer, he can be found at Athletic Field cheering on the Woodchucks. He also loves exploring new places and pushing his comfort zone with new adventures. Last year, he went water skiing and also rode on the back of a motorcycle!
***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.
How are you involved with self-determination? Why did you join the SD Network?
Allison has worked on a number of projects related to self-determination in her career. As an adult with a disability, she really values the importance of the discussing what self-determination looks like, and how to continue to advance it is a principle in services and supports. She currently is the Program Manager for the Northern Regional Children and Youth with Special Health Care Needs Center.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Allison is working on her dissertation for a PhD in Human Services. Her research is focused on social capital and people with disabilities within the context of community development and employment. Social Capital and Self-Determination are very interlinked. She created this document for the Self-Determination Conference explaining how they’re link.
She’s also very excited about seeing Support Decision Making becoming a reality. She explains that she was recently at a meeting where county APS staff outlined what they are doing to implement the law. “Living in Wausau and working across the Northwoods, I appreciate see a large policy change trickle down to the masses,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Allison believes that self-determination goes beyond self-direction and sometimes within the service system there is a not a framework for what that looks like. “Just as we use the term independence to not mean that you should not be connected with others, self-determination does not mean you have to do it alone,” she explains.
What message would you like to share with the members of the SD Network?
Allison stresses that self-determination, like many aspects of disability, is ever evolving and it is important to assess and re-evaluate the way we frame things. She feels that the current discussion regarding person first and identity first language is a good example of the need for ongoing dialogue.
What are some of your hobbies?
Allison keeps pretty busy working on her dissertation. In her spare time, she really enjoys going to Farmers’ Markets—she loves the sense of community they have. She enjoys cooking and baking--especially as it gets colder. She volunteers on a variety of boards and committees and nationally lead the Employment Committee for LPA (the national organization for short stature) 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.
How are you involved with self-determination? Why did you join the SD Network?
Andrea been a Support Broker at Avenues to Community (http://avenuestocommunity.com/) for six years. She has previous experience working with a residential agency and an adult day center for individuals with dementia. I am also a caregiver of a parent with dementia.
As a Support Broker, she has the opportunity to meet people and help them figure out and achieve different dreams. She explains that this includes using her skill as a PATH facilitator or using tools developed by The Learning Community for Person Centered Practices (http://tlcpcp.com) to help figure out different goals. This helps focus on the balance of what is important to (makes he/she happy) and what is important for (health and safety) that each person needs. When individuals have that balance, they are able to make informed choices and self-direct their own lives. She tries to help each person she supports figure out that balance as a Support Broker. She enjoys working with people as they grow and have different experiences.
Andrea joined the Self Determination Network after learning more about person centered thinking and planning from Cindy Kernan. She wanted to find a group of people that she could continue to learn from. She also felt that it was important to learn about what is happening throughout Wisconsin. “The SD Network allows me to see and hear about the good work others are doing,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Andrea is excited that she will soon become a Certified Trainer in Person Centered Thinking through The Learning Community for Person Centered Practices. She was also energized by the recent Self-Determination Conference. “There are a lot of people committed to self-determination and full citizenship for all. It was great to hear what others are doing and how I can be a part of the process,” she explains.
What tip or resource would you like to share with people who want to be more self-determined?
The tip Andrea would share is that self-determination takes learning. She explains that no one ever gets it right the first time and maybe not the second--we learn from our experiences and apply to what comes next. It is also okay to change goals as people learn and grow. Sometimes we learn what we thought we wanted isn't really what we want.
What message would you like to share with the members of the SD Network?
Andrea shares that community and relationships are important components to self-direction. They take time to develop and involve use being present. She encourages people to make sure to take time to nurture those unpaid relationships in those that they support.
What are some of your hobbies?
Andrea enjoys crocheting and spending time with my family. Recently, she started running 5Ks and she’s trying to do at least one per month. She also enjoys being her daughter's Girl Scout leader.
***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.
How are you involved with self-determination? Why did you join the SD Network?
Jeff has cerebral palsy and uses a motorized scooter to get around; he also speech impediment, but that doesn’t stop him from leading a great life. He joined the Network because he wanted to help people and be there for them.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jeff really likes the fact that he can choose what he wants for his care. He has been an IRIS participant for about eight years; being able to have choice means a lot to him.
What tip or resource would you like to share with people who want to be more self-determined?
Jeff wants to encourages people to always keep a positive attitude no matter what life throws at them. He explains that it makes him feel really good when people ask him for help, and because he keeps a positive attitude, people connect with him. He says, “it’s a great feeling.”
What message would you like to share with the members of the SD Network?
Jeff loves being a member of the Network. He likes that people are friendly and they are there for you. He also explains that the Network has good resources. “You guys do excellent work,” he says.
What are some of your hobbies?
Jeff enjoys meeting new people and being outside when it is nice. He also loves listening to music—especially classic rock from the 70s and 80s.
***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.
How are you involved with self-determination? Why did you join the SD Network?
Dave is president of Meaningful Living LLC (www.meaningfullivingwi.com). As a Behavioral Consultant, he works with both the service system and individual being supported by it. His goal is to help support teams develop an understanding of what an individual may be trying to communicate/achieve through their behavior. He explains that typically individuals get referred to me when all other options have failed and an individual is at risk of losing their job, house or freedom. He works with individuals to help them advocate for themselves and get what they want without all the punitive consequences they may not enjoy. “In other words, if their behavior helps them meet a need, I help create supportive environments that encourage them to explore alternative methods of getting their needs met. In fact, I don't insist individuals change their behavior. I help them understand the connection between the decisions available to them, potential outcomes, and accountability,” he says. Dave joined the SD Network because it consists of people providing services as well as individuals receiving them. He strongly believes those who receive services should have a voice in how services are provided and a place where they can speak to those of us who provide them. “I wanted to be a part of that,” he explains.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
From Dave’s perspective, the most exciting thing happening is Wisconsin, in terms of Self-Determination, is MCO's are beginning to recognize responsibility for "challenging behavior" doesn't always fall on the individual, and therefore, ever so slowly, the landscape is shifting from interventions focused primarily on pharmaceutical solutions, to solutions that also include addressing one’s living situation, work environment, and even family dynamics. “The idea behind this is that changes that occur as a result of a more knowledgeable and understanding staff/team, and a more empowered individual, will be more meaningful and longer lasting for all involved,” he states. He explains that medications alone may aid in reducing challenging behavior, or gaining compliance from the perspective of the service provider, but it may also threaten the voice and wellbeing of the person being supported.
What tip or resource would you like to share with people who want to be more self-determined?
Dave suggests that people expect these things from himself/herself as well as those supporting him/her:
-Be yourself.
-Have the courage to be imperfect.
-Accept responsibility for the choices you make.
-Learn from mistakes and use those lessons to grow as a person.
-Value what you do.
-Be creative - there is usually more than one way to get from point A to point B.
What message would you like to share with the members of the SD Network?
In Dave’s field, their focus has always been on helping individuals achieve independence. He explains that unfortunately, one can be fully independent and still feel isolated and alone. That’s why Meaningful Living's motto is, "Providing a foundation for interdependent pro-social community living." He believes that interdependence, a mutual reliance between an individual and his or her community, should be the goal of a fully self-determined life. The people he supports have a lot to offer their communities…as providers, they need to do more than implement, “support services.” He believes they need to do a better job of helping our communities understand, appreciate, and value those they are supporting. Then, ideally, many of the “services” will no longer be necessary.
What are some of your hobbies?
Dave enjoys playing and coaching soccer, drawing, doing outdoor activities with his family and taking their dog for walks.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
How are you involved with self-determination? Why did you join the SD Network?
Lisa is involved with Self Determination because she believes people have a right to direct their own lives. She explains that the thought of her adult daughter, Kelsey, living in a situation where she had no power to choose how she lives her life was simply not an option. Through their involvement in, and utilization of, self-directed long-term support programs, Kelsey has crafted a life of community integration, natural relationships and supports. She points out that being non-verbal does NOT limit her negotiating skills and this is what Lisa absolutely loves about her. “It is because of Kelsey that I want self-determination for everyone – I only wish I had as much self-determination for myself,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Lisa thinks the perspective and self-determination of the family caregiver all too often gets lost or pushed to the way-side. She explains that one of the definitions of Self-Determination in the dictionary is “[self-de·ter·mi·na·tion] noun - the process by which a person controls their own life.” Through her involvement with Respite Care Association of Wisconsin and subsequent collaborations, she hopes to create greater awareness of the need for family caregivers to also achieve self-direction.
What tip or resource would you like to share with people who want to be more self-determined?
A tip Lisa would like to share is to be patient and intentional in understanding communication cues in regards to living a self-directed life-- especially for those who have difficulty communicating verbally. She explains that daughter communicates with her eyes, her behaviors, her interactions, her voice inflection – she knows with parents and guardians this comes more naturally – but to some others, this is the key to opening up many worlds for individuals with disabilities. It’s about going into it understanding it’s not always going to be an easy path (at least not in her household).
What message would you like to share with the members of the SD Network?
Lisa believes in the power of collaboration. She explains that great things happen when shared or related visions are addressed from multiple perspectives. She shares this quote with us: "It is the long history of humankind (and animal kind, too) that those who learned to collaborate and improvise most effectively have prevailed." – Charles Darwin
What are some of your hobbies?
“Good question. Who has time for hobbies,” Lisa jokes. This is a growth area for me, but she did recently start listening to audio-books, both fiction and non-fiction, as it is a form of respite to her from the world and herself. “Ask me again a year from now,” 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.