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.

In this episode of the IDD Health Matters podcast, Terry Reiser discusses her deep involvement in the field of aging and developmental disabilities, highlighting her journey from attending a conference in 2017 to becoming a board member of the Association on Aging with Developmental Disabilities. She shares a personal story about her aunt with Down syndrome, who lived through the traumatic experience of Willowbrook, a notorious institution known for mistreatment of residents, and eventually found a better life in a group home. Reiser emphasizes the importance of recognizing the growing population of aging individuals with intellectual and developmental disabilities and the need for improved health care services, particularly through Medicaid and Medicare managed care programs. She advocates for better data collection, internal education within managed care organizations, and stronger community partnerships to enhance support and health equity for this vulnerable population.

Dr. Alicia Thatcher, a family physician from Saskatchewan, Canada, specializes in primary care for adults with intellectual and developmental disabilities (IDD). Her passion for this field began as a camp counselor and evolved through involvement in organizations like Special Olympics and Best Buddies. Recognizing the gap in adult services compared to pediatric care, she has pioneered curriculum development for medical education, aiming to make care for adults with IDD more sustainable and widespread. She also plays a leadership role in national initiatives, including the Developmental Disabilities Member Interest Group and the American Academy of Developmental Medicine and Dentistry, advocating for integrated care and inclusive education. Her work emphasizes amplifying voices of those with lived experience, using respectful language in healthcare, and creatively embedding IDD topics into medical and dental training.

Andrea Palmer, CEO and co-founder of Awake Labs, was featured on the IDD Health Matters podcast to discuss her company's innovative assistive technology designed to support individuals with intellectual and developmental disabilities (IDD). Awake Labs uses smartwatches to monitor stress and emotional escalation in real time, providing alerts for self-regulation and enabling timely intervention by support teams. The system includes a smartwatch app, mobile app, and a web dashboard for care teams to analyze behavioral trends and improve support strategies. This technology has helped users gain independence, reduce anxiety-related hospitalizations, and improve relationships and community engagement. Palmer emphasized the importance of collaboration, listening to diverse forms of communication, and finding joy in meaningful work that empowers individuals with IDD to lead more autonomous lives.

Massalan Forfana Bility, honored as the Direct Support Professional of the Year at the ANCOR conference, shares her inspiring journey in the field of intellectual and developmental disabilities (IDD) support. Starting in 2018, she transitioned from hospital work to direct support, driven by a passion for helping others. Her role involves assisting individuals with daily routines, promoting independence, administering medications, and recognizing health concerns. Massalan emphasizes empathy, treating those she supports as she would her own family, and shares a powerful story of transforming a challenging relationship into a deep friendship. Her dedication and compassionate approach highlight the profound impact of direct support work.

Melody Johnson, Director of Education and Professional Development at Arc of Monroe, shares her personal and professional journey in the field of intellectual and developmental disabilities (IDD). Growing up in a family that provided care for individuals transitioning out of institutions, Melody was deeply influenced by her mother's progressive approach to fostering independence. Her career evolved from direct support professional (DSP) roles to leadership in workforce transformation and training. She discusses how COVID-19 reshaped training delivery, increasing accessibility through virtual platforms while also highlighting the trauma and isolation experienced by people with disabilities. Melody emphasizes the importance of trauma-informed care, shifting perspectives from "what's wrong with you" to "what happened to you." She shares meaningful stories from her time as a DSP, including organizing enriching trips for individuals she supported. In her closing advice, she encourages inclusive community interactions, early exposure for children to diverse environments, and recognizes the deeply rewarding nature of working in the IDD field—not as a calling for angels, but for those who care.