Kayla’s purpose

Promoting Change Through Personal Advocacy

Care Manager Susan Reichard is helping Kayla with Core Service: Comprehensive Transitional Care.

LIFEPlan Member Kayla McKeon is described by her Care Manager, Susan Reichard, as fierce. “There’s nothing Kayla can’t do once she puts her mind to it,” Susan says.

Kayla has accomplished much in her 35 years. She got her driver’s license, earned a college degree with Cum Laude honors, and won two medals as a Special Olympian. Kayla even helped Mattel design its first Barbie with Down Syndrome, which came from her work with the National Down Syndrome Society (NDSS).

Barbie Girl

As NDSS’s Manager of Grassroots Advocacy, Kayla flew to Los Angeles to meet with children and families to discuss the creation of the first Barbie with Down Syndrome. And when Mattel needed an ambassador for the doll’s launch, Kayla went to New York City to appear on Good Morning America for the big reveal. She jokes that she’s earned the nickname “Barbie Girl” with all the publicity.

Work on the Hill

Woman with Down Syndrome appears in front of the U.S. Capitol.
Kayla McKeon at the Capitol in Washington, D.C.

But much of Kayla’s notoriety comes from her advocacy work with NDSS. Kayla is the first registered lobbyist with Down Syndrome, and she roams the Capitol advocating for legislation to adapt the world to be a better place for those like herself.

Kayla says she never gets nervous when speaking to legislators or before large gatherings of people. “It’s invigorating,” says Kayla. “To me, there isn’t a challenge that I can’t overcome.”

That tenacity earned her a special place in the heart of Rep. John Katko of New York’s 24th district. And soon, Kayla was tapped by the NDSS for their lobbying activities. Ashley Helsing, former Director of Government Relations for NDSS, said Kayla has a knack for connecting with the legislators. “She is in charge of connecting with members of Congress to let them know the importance of the NDSS’s work,” said Helsing in the PBS documentary My Fight for Inclusion. “It’s one thing when I go to Capitol Hill every day and explain to members why these things are important, but when it comes from a powerful advocate as Kayla with her personal story, you can see the impact.”

In Transition

Kayla continues to focus on her self-direction plan with her Care Manager Susan. Kayla’s roommate of two years is moving out of the apartment they share. Susan is there to help Kayla through the transition.

“We love Susan,” says Kayla. “She thinks out of the box, comes up with great ideas, and has good opinions in our meetings.”

Susan has been working with Kayla for over 10 years and knows her well. “Kayla wants to promote change and enjoys being involved in politics. It’s led her to become the person she is now.”