Dr. Laura Brackin shares her professional journey from special education to leadership roles in advocacy, policy, and state services, emphasizing the shift toward community integration over institutional care. Laura recounts a deeply personal experience with her grandson Jude, who was born with Smith-Lemli-Opitz syndrome, a rare genetic disorder affecting cholesterol production and overall development. This experience reshaped her perspective on disability, highlighting the dangers of assuming limitations and the importance of fostering independence. She underscores three key lessons: assume capability, prioritize communication, and invest in early intervention, illustrating how these principles transformed Jude's progress and quality of life. Laura also stresses the critical role of family belief and support in achieving success for individuals with disabilities, urging professionals and families alike to choose hope and empowerment over doubt.

Dr. Jodi Tate is a psychiatrist from Iowa who specializes in working with adults with intellectual and developmental disabilities (IDD) and mental health challenges. Dr. Tate shares her journey into this field, emphasizing the lack of formal training for healthcare providers in treating individuals with IDD and advocating for better education through initiatives like a specialized psychiatry residency track and Project Echo—a virtual case-based learning program for direct support professionals. She highlights the importance of addressing diagnostic overshadowing, using medications judiciously, and persistent advocacy for quality care. Dr. Tate also recounts a success story involving electroconvulsive therapy for a patient with severe depression, illustrating the need for individualized, evidence-based treatment. The conversation underscores systemic gaps in healthcare for people with IDD and calls for expanding workforce training to ensure equitable, compassionate care.

Steve Gonyea, an advocate and foster parent from New York, shares his journey from seeking help for his son with autism and other disabilities to becoming a statewide leader in disability advocacy. Initially struggling to find proper diagnoses and services, Steve began helping other families and eventually served on agency boards, fostering over 170 children with complex needs. He highlights systemic issues such as long wait times for evaluations, lack of oversight in medication management, and inadequate dental care access, advocating for creative, out-of-the-box solutions like building sensory spaces and collaborating with local providers. Steve emphasizes the importance of parent-driven advocacy, networking through support groups, and pushing for legislative changes, such as ombudsman programs, to improve oversight and services for individuals with intellectual and developmental disabilities.

Nick Alexander shares his journey from industrial engineering in regulated industries to innovating healthcare technology. Nick explains how his company, Never Alone, focuses on improving independence and social connection for seniors and individuals with intellectual and developmental disabilities (IDD). Initially designed as a telehealth platform, it evolved into a holistic care solution combining medical support and social engagement, available 24/7 through simple devices. The service emphasizes personalized care plans, rural access, and partnerships with local providers to ensure continuity and trust. Nick highlights the importance of solving the right problems, building strong teams, and maintaining user-centered design, concluding with three guiding principles: lead with care, collaborate and innovate patiently, and practice kindness.

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.

This IDD Perspectives webinar episode centers on person-centered thinking and practices in supporting individuals with intellectual and developmental disabilities (IDD), especially those with co-occurring mental health and behavioral challenges. Hosted by Dr. Craig Escudé and featuring Bob Sattler, the discussion emphasizes the importance of autonomy, informed decision-making, and balancing personal happiness with health and safety. It critiques traditional service models that often prioritize safety over individual fulfillment and advocates for systemic changes aligned with the Home and Community-Based Services (HCBS) regulations. Key themes include trauma-informed care, organizational culture, staff empowerment, and the "Platinum Rule" — treating people the way they want to be treated. The conversation highlights nine critical elements for building a person-centered system, including mission alignment, advocacy, outcomes over goals, and quality management, while stressing that meaningful change requires leadership commitment and innovative resource connections.