Category: Member Spotlight
How are you involved with self-determination? Why did you join the SD Network?
Terry has been promoting the independent living cause since 1977, when he served as Assistant to the Director of the White House Conference on Individuals with Disabilities. He then managed a federal government disability rights program and had a key role in the establishment of the National Disability Rights Network. Terry returned to Wisconsin in 1985 to begin his consulting and speaking business. His writing and his work in the self-determination movement are founded on this illuminating personal experience, as well as his work with other families. Wisconsin Governor Jim Doyle appointed Terry to the state’s Board on Aging and Long-term Care in 2006 and to its Quality Home Care Authority Board in 2009. Terry is a Board member of a national advocacy organization dedicated to elevating the status and wages of direct care workers and is engaged in shaping policy advocacy for the Alzheimer’s Association of Southeastern Wisconsin. He assists Connections with issues related to effective support for older adults participating in IRIS. He also is a founding member of InControl Wisconsin.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Terry shared that InControl Wisconsin recently held its fifth well-regarded conference on self-determination and aging. He explained that the conference was enriched by Simon Duffy, the founder of In Control in the United Kingdom, who traveled to Wisconsin to spend several days with a number of organizations, concluding with an inspirational keynote presentation at the conference-- and highlighting the pioneering aspect of Wisconsin's contribution to the advancement of empowered aging.
What tip or resource would you like to share with people who want to be more self-determined?
A tip Terry would like to share is that "Dementia"-- a prominent medical issue among older adults-- is not a diagnosis. He explains that it refers to symptoms, such as memory loss and confusion. “Alzheimer's, of course, is a frequent cause, but dementia can be caused by other, treatable, medical problems, such as alcohol abuse, depression, vitamin deficiency and adverse reactions to medications,” he says.
What message would you like to share with the members of the SD Network?
Terry’s definition of self-determination is based on his experiences with his mother. He defines self-determination as, "the most control possible over the best possible life." He explains that this was their realistic "dream" and he believes it is what we all should be striving for in our support for people of all ages in Wisconsin's long-term care programs.
What are some of your hobbies?
Terry loves spending time in the greatest meeting place he has known: a popular Racine coffee shop which attracts people of all ages. He shares that it is a remarkable source of community support for older adults (such as himself he jokes) and others with difficulty living life without some additional assistance. “And its coffee and pastry are superb,” he adds.
***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?
Jane got involved in self-determination through her place of employment which is Portal, Inc. in Grafton. She started four years ago as a Prevocational Mentor and worked with getting people out in the community and beginning to experience jobs. Currently, she work as a Job Consultant and Job Coach with Portal. I also work with WIOA students two days a week teaching them self-determination and living skills.
Jane also helped restart the People First Chapter in Ozaukee County and became and advisor. It was then that she heard of the Self-Determination Network and decided to join to make community connections and have a source to help her. She has attended the Self-Determination Conference the past four years and in 2015, she was awarded the Diehard Advocate award. “It was pretty exciting,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jane is excited to see is all of the jobs available today in our community that are being filled by people with disabilities.
What tip or resource would you like to share with people who want to be more self-determined?
A tip Jane would like to share is that if you do not vote or do not know how, ask for help. She encourages people to register to vote and head to the polls on voting day. She says, “your voice matters.” She explained that they had a member of their People First Chapter get back her right to vote which was really exciting.
What message would you like to share with the members of the SD Network?
“Many hands make light work,” Jane says. She explains that we don’t always have to reinvent the wheel. She encourages people to ask for help--more times than not someone wants to help and can.
What are some of your hobbies?
Jane is a lady with many hobbies. In addition to sewing, quilting, and painting, she loves to wall paper. She also is an avid reader—she reads a book (mostly fiction, biographies, or cookbooks) every 10-14 days. She also loves to people watch.
***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?
Tyler’s involvement with self-determination is a result of him having to plan all his care needs while still going to school. He joined the SD Network in an effort to share his experiences as well as learn from others.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Tyler shared that recently he met with an organization on campus to begin the process of looking for jobs. This involved preparing his resume and looking for careers in the area. He’s also excited that recently hired a new caregiver.
What tip or resource would you like to share with people who want to be more self-determined?
Tyler has some great recommendations who would like to become self-determined and more independent. First, be willing to ask for help. He explains that there are several people willing to help you with your needs, you just need to reach out and ask. You’ve already taken a big step towards this by joining this network, but if you still have questions that need answering don’t be afraid to ask. Second, be willing to go outside your comfort zone. He says that he considers himself to be a very shy person, but he knew that if he wanted to pursue independence, he would need to come out of his shell a little bit. Third, h encourages people to look for resources in your area. Your local ADRC is a great place to start. Finally, make a set of goals and work to achieve those goals. Everyone is different, and what is Independence for one person may not be the same as independence for another. You should set goals for yourself and do your best to achieve those goals. He also has advice on his website www.transition2collegewi.com.
What message would you like to share with the members of the SD Network?
A message that Tyler would like to share with everyone is don’t settle. He says, “achieve you goals and dreams so you don’t have any regrets. Don’t let logistics get in the way of achieving your goals!”
What are some of your hobbies?
When Tyler isn’t busy studying, he enjoys watching Netflix and playing board and tabletop games.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
How are you involved with self-determination? Why did you join the SD Network?
Jim originally became involved with Self-Determination through his work as the CEO of Community Care of Central Wisconsin, now known as INCLUSA. He explains that Community Care of Central Wisconsin (CCCW) grew out of one of eight original Family Care pilots operating in Portage County, WI. The organization believed that Self-Determination was not just a concept to consider, or to use as an add on to the managed care service. Rather, Self-Determination became a valued component of their offering to their participants, or members. As a result, Self-Determination was offered and used by a good percentage of members, either through Family Care or a distinct SDS option. When he retired in 2016, he felt really good about how Self-Determination worked for their members.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jim shares that the good news is that self-determination moved on from a concept in Wisconsin Long-Term Care circles in the late 1980’s to an actual movement that has provided opportunities for so many Wisconsin residents to live self-determined lives. “The fact that there is a Self-Determination Network and so many people working to support SDS is great news,” he says.
What tip or resource would you like to share with people who want to be more self-determined?
Jim encourages people who want to become more self-determined in his or her life to make sure that those around you--your circle of friends and support--know what your desires and wishes for living a self-determined life are--and that you keep those conversations at the forefront of your life so that it can actually happen.
What message would you like to share with the members of the SD Network?
Jim’s involvement with self-determination has continued in retirement with his involvement with the InControl Board. He says, “this is a really dedicated group of individuals whose purpose is to keep Self Determination in the forefront of conversation when it comes to the provision of long term care opportunities for residents across Wisconsin.”
What are some of your hobbies?
In addition to his involvement with the InControl Board, Jim enjoys serving his community (Stevens Point) by being a part of the Community Foundation and Green Circle Boards, and by hosting a long time radio show on 90FM WWSP called “The Acoustic Revival” every other Sunday morning. He loves to ride his bicycle, tend to his flower gardens, attend live music performances, walk his dogs, ride trains, cook, catch fish, feed the birds, talk to his daughters, hang out with friends, and pick at his guitar.
***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?
Lynn has been involved in the disability field since the late 70s. He became aware early on that government, provider agencies, and (sometimes) families were exerting too much control over people with disabilities. He could see that this was making it hard (or sometimes impossible) for people to grow, learn, become real citizens, and pursue a life of their own choosing. “As an advocate, I knew I had to push back against that hyper-control of people. Back then, we didn’t call it self-determination, but later when the self-determination movement began to take shape in North America and other parts of the world, I got excited about that and wanted to be part of it,” he explains. Joining the SD Network was an obvious choice for him--it was a way for me to connect with other self-determination believers in Wisconsin.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Lynn is excited about IRIS starting up in Dane County. He says that it looks like it might be the first county in the state where more than half of the adults with developmental disabilities choose self-direction, either in IRIS or in Family Care. “Since Dane County is the place in Wisconsin where self-determination first took hold in a sizable way in our state, there are many people and organizations here who have innovative ideas about how to support people to self-direct their services and their lives,” he explains. He believes that innovative spirit can energize the IRIS program in ways that we haven’t seen yet. In particular, he thinks it will be interesting to see how IRIS participants self-direct their supported employment and supported living services in Dane County.
What tip or resource would you like to share with people who want to be more self-determined?
Lynn would like to see IRIS plans include a combination of independent workers and service provider agencies working together. He explains that a lot of people in IRIS have chosen to hire their own workers, which is great; however, there are some progressive provider agencies in the state who have respect for people’s right to make decisions about how their services will be provided. He thinks there is potential for more people to develop IRIS plans which include a combination of direct hiring of independent workers and contracting for services with provider agencies that believe in self-direction.
What message would you like to share with the members of the SD Network?
Lynn wants to encourage people to keep exploring self-direction. Even though the IRIS program and the self-direction option within Family Care have been around for several years, he still feels like we’re in the early stages of understanding how to apply self-direction principles to the long-term care system. “I hope that people will keep trying out new ideas and pushing the envelope on this. I think we are just barely beginning to discover the full potential of what self-determination ideas could mean for our long-term care system,” he says.
What are some of your hobbies?
Lynn and his wife love to travel to new places and discover vistas, food, people, and culture that is different from their own. They are both semi-retired now, so they have been able to have some great adventures in recent years. One that stands out to him was backpacking the Camino de Santiago, the 600 mile 1000 year old pilgrimage in northern Spain, that was once hiked by Charlemagne. “It was an amazing experience on many levels,” 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.
How are you involved with self-determination? Why did you join the SD Network?
Kate has always believed that people should have control of their own lives and thinks of self-determination as something that applies to everyone. “Many people take it for granted and don’t realize that there are people out there who don’t experience the same freedom to live their lives that others enjoy,” she explains. In her work, she’s passionate about helping people build self-determination into their lives in whatever way makes sense to them. This includes choosing where to live, who to live with, where to work, and who supports them, among other things. She believes that if we don’t build communities where everyone experiences self-determination, we don’t truly have community.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Kate has enjoyed watching self-direction take off in Wisconsin’s adult long term care programs. She explains that people planning for self-direction in Family Care and IRIS underestimated what a popular choice it would become. “I’m not surprised--I’m energized,” she exclaims!
What tip or resource would you like to share with people who want to be more self-determined?
Kate encourages people who want to be more self-determined to start by getting good information, and if something doesn’t make sense, keep asking questions. She explains that, “you may need to get information from a variety of sources to fully understand what your options and the possibilities are.” She says not to give up if you get discouraged--just find someone you trust to help you through it.
What message would you like to share with the members of the SD Network?
Kate is very thankful there is a community of people who care about self-determination as much as she does, and she wants to thank everyone for joining the Network. She encourages Network Members to let others know it’s out there and find ways to encourage them to join!
What are some of your hobbies?
While Kate isn’t working, she has a very rich family life which keeps her very busy. She also tries to find time to read, meditate and connect with others which helps her expand her perspective and keeps her going on a day to day basis.
***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?
Carrie is the Community Partnership Specialist in Northeast WI with TMG (IRIS Consultant Agency), she felt it was very important to be a part of this Network and absorb as much information as possible to be able to provide assistance to the participants we serve, as well as her community. After her manager suggested she look into the SD Network, she reviewed the website and all the great things that the Network was doing, and she wholeheartedly joined.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Carrie received the opportunity to become the Community Partnership Specialist at TMG, which is a newly created position. Her role is to partner with the community, schools, job development agencies and organization that are dedicated to helping individuals that are part of the IRIS program. She has been able to organize a vendor event that allowed her to have over 20 vendors that were able to help over 150 participants and their families get the resources and services that they needed, all while having a fun time. “Making a difference in people’s lives is what it’s all about,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Carrie encourages everyone to take baby steps when it comes to trying something new. She says, “you might be out of your comfort zone, but try your best.” She explains that taking two steps forward and one step back might take a bit longer to get to your goal, but eventually, you’ll reach it. She also reminds people not to be afraid to ask a lot of questions—others probably have the same questions.
What message would you like to share with the members of the SD Network?
Carrie often encourages people to put himself/herself in another person’s shoes to really understand the struggles someone might have every day. “Be kind and compassionate when working with others” she says.
What are some of your hobbies?
Carrie enjoys spending time with her family which consists of her husband and five wonderful children. When she finds time, she also enjoys reading and playing word games.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Mike. This self-advocate began leading a self-determined life at a very young age. He believes that having the simplest choices can help a person become more self-determined. When he’s not busy volunteering for the Wisconsin Augmentative Alternative Communication Network or attending conferences, he enjoys catching up on his favorite TV shows. We’re so fortunate to have Mike as a member of the Self-Determination Network.
How are you involved in self-determination? Why did you join the SD Network?
Mike joined the SD Network to keep up on in Wisconsin for people with disabilities. He explains that he has lots of friends on the Network, so they like to discuss what’s happening on the website.
Tell me some good news – what’s the most exciting happening for you (or in Wisconsin) in terms of self-determination?
Mike was happy that the passing of the state budget ended waiting lists for people with disabilities. He says that this will help a lot of people to get much needed services. He’s also looking forward to attending two special education conferences soon.
What tip or resource would you like to share with people who want to be more self-determined?
Mike encourages parents who have children who have disabilities to start giving the child options at a young age. Simple things, such as picking out his/her own clothes or telling someone what he/she wants for lunch, can be crucial in leading a self-determined life. He points out that children who are nonverbal can do this too. “That’s how I got started living a self-determined life,“ he says.
What message would you like to share with the members of the SD Network?
Mike would like to three things with the members. First and foremost, he says that people have to have hope everyday because if people don’t, they’ll never be happy. Second, he says, “we need to work with what God has given us.” Lastly, he encourages people to try something at least three times before given up.
What are some of your hobbies?
Mike is very involved in the Wisconsin Augmentative Alternative Communication Network and currently he’s busy getting ready for the United States Society of Augmentative Alternative Communication 2018 Membership Drive. In his free time, he enjoys catching up on his favorite TV shows.
***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?
Barb is one of the Self-Directed (SDS) coordinators for Community Care, Inc. She joined the Network to take advantage of the pool of experience of the members of the Network. “There’s always up-to-date information coming out of the Network,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Barb explains that the good news is the fact that we have moved beyond just talking about self-determination. There are so many resources now to assist people along the way. “Whether it’s needing an advocate, information on housing options or some practical advice on hiring employees, there are people who are knowledgeable and willing to make changes happen. That’s happening on an individual person to person level as well as impacting the system as a whole,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
“Don’t be afraid to reach out and ask for assistance, brain storming, or just for support,” Barb says. There are people within the Network who may have run into the same issue at some time.
What message would you like to share with the members of the SD Network?
Barb would like to share that she values the diversity and knowledge the different members bring to the Network. “Especially in this time of political uneasiness, the determination and thoughtful way roadblocks are tackled is appreciated,” she explains.
What are some of your hobbies?
Barb is an avid traveler; she has been to 16 different countries. She also enjoys reading and says that mystery novels are her favorite.
***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?
Ann has been an IRIS Consultant with TMG/Magellan for five years. She joined the Network to stay informed about self-direction, work strategies for people who self-direct, and to hear the latest about concerns and legislation.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Ann explains that she loves to see the light in the eyes of people when they start to think of life’s possibilities and how the IRIS program can partner with them to enable them to have the life that they want.
What tip or resource would you like to share with people who want to be more self-determined?
Ann encourages people to “dare to dream.” She explains that people should be creative and brainstorm with their IRIS consultant. “ASK! Don’t assume that the thing you need to achieve is not covered by IRIS. Partner with your consultant to make it happen. You are in the driver’s seat of your life…go where you want to go, do what you want to do and be who you want to be,” she exclaims! Her personal theme is, “there is no such thing as Impossible.”
What message would you like to share with the members of the SD Network?
“Foundational to Self-Direction is Problem Solving from the consumer up,” Ann says. Ann explains that each organization needs a consumer advisory committee to identify what is not working well and to brainstorm creative remedies. People want their programs and services to be sustainable, flexible, and effective. They know what needs to be fixed. Get them together and develop creative solutions together.
***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.