Author: Emily Denholm, ds-connex team member

One item on many Down syndrome walk coordinators’ wish lists is to engage local school districts more in their walk event. After all, many of the children Down syndrome organizations serve attend the schools right in their community. It can be challenging though for these organizations to get their foot in the door. We sat down with Robbin Lyons, president of Wisconsin Upside Down (WIUSD), who over the last five years has built strong relationships with the local school districts in the Hartland, WI area.

Establishing the Relationship

“Treat your local schools like a donor,” advises Robbin. “Don’t go in and have an ask from the get go.” When WIUSD first approached their local middle school, they asked if they could use the school as a meeting space to bring in self-advocate and renowned speaker Karen Gaffney to talk more about her success in life as a result of being included. Robbin invited teachers, administrators and students to come. It was a win/win for both WIUSD and the school; but the conversation didn’t end there. “We started creating a relationship with them. As they got to know us and trust us and see the value in what we were doing, they were more willing to participate.”

Soon after, Robbin went back to the school and asked to use the gym for a basketball clinic put on by WIUSD. The organization invited all of the school’s students with special needs to participate. As Robbin spent time working on the clinic, she noticed that the basketball nets weren’t in the best of shape. She approached the school again with an offer to replace the hoops and backboards with ones that retracted to make them more usable for children with special needs. Through funding WIUSD received from a grant and matching funds the school offered, they were able to replace the main goals on each side of the school’s gym – creating a more inclusive environment for children of all abilities. That spirit of inclusion began to catch on throughout the school.

Mobilizing School Support

The positive momentum Robbin built with the schools opened the door for additional opportunities. More recently, WIUSD has had the opportunity to go into the 5th grade government classes, where they learn about the Constitution and how Congress works. “We volunteered to come in and speak about how a bill becomes a law and gave them a real life example with the ABLE Act. We invited them to, with permission from their parents, send letters to Congress in support of ABLE” – some students even got letters back!

The relationship WIUSD built continued to open the doors for the inclusion of individuals with special needs. “The Special Ed teacher tore down the walls of the Special Ed room so there would never be a temptation [to separate students with special needs from their peers],” shares Robbin. “The special education room is no longer in existence.” As a way to thank the school for their support and advocacy work of individuals with Down syndrome, Robbin announced she would be presenting the school an award at the Buddy Walk® and invited teachers, administrators and students to attend. The district Superintendent got behind the cause and encouraged everyone to participate in the walk, especially the classrooms who had a child with Down syndrome. They saw an unprecedented about of school support at the Buddy Walk® that year.

Maintaining a Long Lasting Relationship

WIUSD continues to work hard to build a stronger relationship with its local school districts and expand to student audiences it hasn’t reached. One new program WIUSD is rolling out is a teen advisory council where students from high school to young adult can participate. Students are paired with self-advocates and hold weekly phone calls, where the students focus on mentorship, assisting with volunteer opportunities, and developing fundraising campaigns for WISUD at their school. “They work like a committee within WIUSD and they have one board vote. One representative gets to come to the board meeting and they bring one or more of the self-advocates too.” WIUSD is excited to see this program take-off and engage more high school students in the Buddy Walk® and other programs.

One of the best pieces of advice Robbin has for other organizations is to say thank you to the schools and recognize them for their support. “Every time we do something with the schools, I send out a press release to help generate positive stories about the school.” The power of appreciation goes a long way with the school system in creating a culture of inclusion, advocacy and fundraising support for individuals with Down syndrome.

If you enjoyed this post, please check out the rest of our Event Coordinator Tip series. We feature event tips from around the country in an effort to share ideas and help build our Down syndrome community.