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.

Nick Wood, speaking at the Kansas InterHab conference, discusses the role of InterHab as a statewide trade association supporting providers for people with intellectual and developmental disabilities (IDD). He emphasizes the benefits of collaboration, communication, and training among member organizations, as well as advocacy for policy improvements. Key challenges include workforce shortages, recruitment and retention of direct support professionals, and the need for person-centered approaches. Wood also explores the complexities of managed care in Kansas, highlighting its unique full-risk Medicaid model and the importance of integrating medical, behavioral, and long-term supports. He calls for better training, common language, and innovative solutions to address waiting lists and improve health equity for individuals with IDD.

In this episode of IDD Health Matters, Dr. Craig Escudé interviews Mary Kay Rizzolo, CEO of the Council on Quality and Leadership (CQL), an international accreditation body focused on improving services for individuals with intellectual and developmental disabilities (IDD). Mary Kay discusses CQL's mission to enhance quality of life through person-centered practices, training, research, and accreditation. She emphasizes the importance of understanding individuals' preferred outcomes, using tools like Personal Outcome Measures, and adopting a strengths-based approach called Appreciative Inquiry. The conversation highlights how treating staff well and respecting the dignity and rights of individuals leads to better health outcomes and reduced emergency interventions. Mary Kay also shares insights from her career and the value of community-based services, concluding with three key recommendations: embrace strengths-based models, tailor supports to individual goals, and presume competence while encouraging risk-taking.