Ep 123: Jackie Kancir Pushes Policy and Integration for People with Profound Autism

Jackie Kancir, a lifelong patient and policy advocate and current Policy Director for the National Council on Severe Autism, discusses her work to improve health equity and services for individuals with profound autism and intellectual disabilities. Speaking at the American Academy of Developmental Medicine and Dentistry conference, she highlights challenges such as the "cliff" faced when individuals age out of pediatric care, the need for integrated health systems, and her efforts to amend the Autism CARES Act and implement mandatory hospital protocols for safe care. Drawing from personal experience as a mother to a 21-year-old with profound autism and complex medical needs, Jackie emphasizes collaboration among policymakers, clinicians, and advocates, and shares practical insights like addressing diagnostic overshadowing and thinking creatively about meaningful opportunities for people with disabilities.