August 2026 Pediatric Lecture Series: Pediatric Rehabilitation Advocacy-Session Recording

Video Transcription

Video Summary

This panel on pediatric rehabilitation advocacy emphasized that effective advocacy is strongest when clinicians partner with people who have lived experience, including disabled individuals and family members. Amy Houtrow opened by framing advocacy as an essential extension of clinical care, not an extra task. She highlighted the “nothing about us without us” principle and encouraged participants to think of advocacy as layers added to everyday practice, from helping individual families to influencing hospital, state, and federal systems.<br /><br />Panelists shared their personal and professional paths into advocacy. Dori Ortman described how her children’s autism and Down syndrome led her into family-centered advocacy training and teaching. She stressed that clinicians bring credibility and data, while families bring stories and lived experience; together, they create compelling messages. She also taught a practical strategy: know your audience, make a specific ask, and tailor the message to what decision-makers care about, whether that is constituents, cost, or legal compliance.<br /><br />Deb Gabler-Spyra and Rachel Byrne used cerebral palsy as an example of successful but fragile advocacy. They described efforts to restore CDC surveillance for CP, increase research attention, and secure policy changes. Rachel noted that new data revealed high mortality, persistent prevalence, and increased severity/comorbidities, giving advocates powerful evidence for policymakers. She also explained that progress can be reversed without continued pressure and funding.<br /><br />Christy Sector closed by connecting personal self-advocacy with broader systems advocacy, sharing how being heard as a child shaped her life and career. The session ended with concrete tools for action, including listservs, ResistBot, Five Calls, FactZero, public comments, op-eds, and coalition-building.

Keywords

pediatric rehabilitation

advocacy

lived experience

family-centered care

disability rights

cerebral palsy

autism

policy change

coalition building

self-advocacy