From Pittsburgh to D.C.: How Local Advocates Impact National Disability Policy
Teal on the Hill: Spina Bifida Advocacy in Action
The Spina Bifida Association’s (SBA) Teal on the Hill is a prime example of this macro-level advocacy at work. As the SBA’s largest annual advocacy event, it brings the community together to fight for disability rights, healthcare affordability, access to medical supplies, and continued federal funding for the National Spina Bifida Program at the CDC.
For people with Spina Bifida and their families, these federal policies directly impact access to specialists, employment, and overall quality of life.
“Teal on the Hill matters because adults with Spina Bifida are writing a brand-new chapter in history. We are the first generation living long enough to become senior citizens, yet too often our healthcare system and public policies haven't kept up.
We face an 'adult care cliff' where specialized pediatric services disappear, but adult systems are not prepared to meet our needs. By meeting with legislators, we put a face to these issues. We help them understand that people with Spina Bifida don't stop needing care when they turn 18—we deserve the opportunity to live healthy, independent lives across our entire lifespan.” — Monica Still, UPMC Mercy Clinic Nurse & Advocate living with Spina Bifida
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Roll on Capitol Hill: Wheelchair Users Raising Their Voices
CLASS is also proud to highlight the recent Roll on Capitol Hill, United Spinal Association’s signature policy event designed to strengthen the voice of wheelchair users in federal policy.
At this year’s congressional meetings, local advocates elevated critical, common-sense issues: speeding up wheelchair repairs, improving access to complex ultralight wheelchairs, protecting access to individualized medical supplies, and defending Home and Community-Based Services (HCBS).
The Pittsburgh Chapter of United Spinal Association was well-represented by dedicated local advocates, including Lynn Worobey and Christie Cyktor.
“As both a clinician and a researcher, I see every day how policy decisions made in Washington translate directly into daily lives. Roll on Capitol Hill gives us a rare opportunity to sit down directly with representatives and make sure they understand what’s actually at stake here in Pennsylvania. Advocacy isn’t separate from clinical care—it’s an extension of it.” — Lynn Worobey, University of Pittsburgh Researcher & PT at UPMC Mercy
For Christie Cyktor, incoming TechOWL Coordinator at CLASS, the trip reinforced that systemic change requires personal stories.
"Meeting with our federal legislators gave me the opportunity to share not only my own experiences as a wheelchair user and occupational therapist, but also the stories of so many others whose voices deserve to be heard. Learning to advocate for yourself builds confidence, but using that confidence to advocate for others is how we create lasting change." — Christie Cyktor, Advocacy Coordinator, United Spinal Pittsburgh
