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.

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.