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.

Kayla McKeon, the first registered lobbyist with Down syndrome, discusses her advocacy work, including lobbying for disability rights and health equity, and her involvement in the creation of a Barbie doll representing individuals with Down syndrome. She highlights the importance of inclusive representation and policy change, such as the Organ Transplant Discrimination Prevention Act and fair wage initiatives. Kayla also emphasizes the high risk of Alzheimer's among people with Down syndrome and the need for related health policy efforts. She concludes with empowering advice: share your personal story, advocate for issues affecting the disability community, and always be yourself.

Christine Clause, a dedicated mother and advocate, shares her profound journey of raising her son with developmental disabilities and her professional role at Neighbors Inc., a nonprofit in New Jersey supporting adults with intellectual and developmental disabilities (IDD). She recounts the challenges she has faced navigating the healthcare system, including a harrowing experience when her son was hospitalized with the flu and nearly died due to medical professionals' assumptions about his quality of life. Christine emphasizes the importance of family members asserting their knowledge and role in medical decision-making, and she highlights how showing a video of her son thriving in the community helped shift the hospital staff's perspective. She passionately advocates for better clinician education through programs like IntellectAbility's Fatal Five Plus training, which addresses preventable causes of death in people with IDD. Christine also underscores the need for family and staff training, the value of nurses in hospital settings, and the critical importance of recognizing individuals with IDD as people first. Her insights call for systemic change in healthcare and support services to ensure dignity, inclusion, and quality care for all individuals with disabilities.