Author: Emily Denholm and Jen Franklin Kearns, ds-connex team members

While Down syndrome organizations come in all shapes and sizes serving different communities, there is a common bond that unites – the desire for acceptance, inclusion and the best possible opportunities for individuals with Down syndrome. It’s a mission that can only be achieved together.

Down syndrome walks are a vital piece in accomplishing the goals of the Down syndrome community; but we recognize they are a part of a larger unified volunteer effort to bring positive change. In a series of interviews we did with advocates in the Down syndrome community, we learned how they are taking collaboration beyond the borders of their Down syndrome organization to help build a better tomorrow.

Steve Freeman, Board President
Southern Arizona Network for Down Syndrome (SANDS)

In addition to his work with SANDS and the Tucson Buddy Walk®, Steve Freeman also volunteers his time as the VP of The Arc of Tucson and is a founding member of Tucson Unified School Districts Exceptional Parent Project, in addition to attending various national Down syndrome conferences. He is also on the National Board for the National Down Syndrome Society (NDSS) and has participated in two Buddy Walk on Washington events with NDSS in Washington D.C., where he has met with legislators to discuss policy that impacts the larger Down syndrome community.

Through The Arc of Tucson, Steve has had the opportunity to be involved with local Inclusion Workshops, a collaboration among The Arc/SANDS/Autism Society of Southern Arizona. The workshops connect parents with educators, administrators and other parents to learn techniques on how to work together to create a better learning environment for kids with disabilities. In the process, new programs have been born like Project FOCUS, which has helped students like Steve’s daughter attend college.

Steve’s work with the Tucson Unified School District’s Exceptional Parent Project, which invites parents, grandparents and district officials to come together monthly in an effort to open up dialogue, is also making an impact. Each time there is a different speaker (i.e. disability leaders, IEPs, attorneys, etc.) and the topics can range from education to guardianship to iPad Apps that assist with learning and more. What started out at 10-20 people has grown to the group’s largest meeting of 130 people!

Overall, Steve shares his main motivation to create a collaborative environment in the education arena is simple. “After school, our kids are not segregated in self-contained classrooms. They need to learn how to function in an inclusive environment that prepares them for adult life.”

Marge Barnheiser, Program Director
Down Syndrome Association of Central Ohio (DSACO)

Marge has dedicated 27 years to her local Down syndrome organization. While she is actively involved with DSACO, Marge also makes it a point to spend time individually volunteering and advocating at the local and state level.

It is Marge’s life mission to see change continue to happen for individuals with Down syndrome, like her daughter Alyson. She has volunteered on the Strategic Planning Committee for the Ohio Department of Developmental Disabilities, was involved with the Down Syndrome Information Act passed in December.

2014 and devotes time to The Ohio State University’s Nisonger Center Consumer Council, which promotes dental clinics, preschool and the Transition Options in Postsecondary Settings (TOPS) program for individuals with Down syndrome in Ohio.

Marge has also served on the board of directors for ARC Industries, a service that works to connect individuals with disabilities with employment opportunities in central Ohio. She is most excited about the transformation the service has made recently from sheltered workshops to opportunities that are now more community oriented.

From all of her volunteer work across the state, Marge shares that what she has learned the most is, “If we support one another, if we learn from one another in our efforts, together we are not just a stronger Down syndrome community, but a stronger disability community.”

Shanon McCormick, Vice President
Connecticut Down Syndrome Congress (CDSC)

Outside of her role at CDSC and the Buddy Walk®, Shanon is active at the local and national levels in helping to shape public policy to support individuals with Down syndrome. Locally, Shanon is involved with Families for Families, an organization that advocates for legislative change on important topics affecting adult life, like housing. “My son is so close to transitioning out of school. I want to be a part of creating the type of change that he is going to need,” says Shanon.

On the national level, Shanon has participated in three Buddy Walk® on Washington events with NDSS in Washington D.C., where she has met with legislators to discuss policy that impacts the larger Down syndrome community. Shanon describes the experience as empowering. “It’s a chance to speak to someone in a position of power, who influences the way things are going to work. It can be intimidating, but everyone has a story to tell. I think about my son and I tell lawmakers how policies will affect his life.”

Shanon is a strong believer in the power of collaboration. “CDSC is fairly small, all volunteer lead, but we need to do big and powerful things here in Connecticut that we cannot do on our own. When we actively partner and network, we can accomplish more and are much more effective.”

Community is Key

From our conversations with Steve, Marge and Shanon, it is clear that these advocates all place a high value on collaboration and its ability to affect change. Through many different avenues: fundraising, education, housing, public policy, etc. parents, self-advocates and community members alike are working together to bring a better future for those with Down syndrome.