In this episode of IDD Health Matters, Dr. Craig Escudé welcomes Mary Brogan, the state director for developmental disability services in Hawaii. Mary shares her extensive experience managing programs that impact individuals with intellectual and developmental disabilities (IDD), including the oversight of the 1915(c) Medicaid Waiver and neurotrauma services. She highlights the unique challenges of providing dental care and the importance of accessible health services tailored to meet the needs of people with IDD in Hawaii.

Mary and Dr. Escudé dive into the critical importance of person-centered practices and how a preventative, systematic approach to healthcare can vastly improve outcomes for individuals with IDD. They discuss the concept of “diagnostic overshadowing,” where medical professionals might attribute symptoms solely to a disability rather than exploring underlying health issues. By encouraging more training and awareness among health practitioners, Mary and Dr. Escudé advocate for a future where IDD patients receive the comprehensive care they deserve.

The episode also highlights Mary’s work with the National Association of State Directors of Developmental Disabilities Services (NASDDDS). She explains how the organization provides invaluable federal-level advocacy, technical support, and guidance to help state agencies better serve their communities. Reflecting on the collaboration during the COVID-19 pandemic, Mary shares her belief in the power of partnerships and the importance of balancing dedication to work with personal well-being.

In this episode of the IDD Health Matters Podcast, Dr. Craig Escudé is joined by John Raffaele, Director of Educational Services at the National Alliance for Direct Support Professionals (NADSP), for a candid conversation about the evolving role of direct support professionals (DSPs) and their impact on the lives of people with intellectual and developmental disabilities (IDD). Recorded live from the NADSP Annual Conference in Pittsburgh, this episode dives deep into the unique challenges and responsibilities DSPs face and how the industry is working toward elevating their role from entry-level caretakers to respected professionals. John sheds light on NADSP’s mission to redefine DSP training as meaningful development, focusing on professional growth rather than just compliance-based instruction.

John also discusses the critical need for a standardized credentialing and certification system for DSPs—something he likens to a medical residency, providing DSPs with hands-on, guided experience rather than simply checking off boxes for required trainings. He emphasizes that DSPs are often left underprepared by traditional entry-level training models, which typically focus on emergency response rather than the nuanced daily support most individuals with IDD require. With over 1.5 million DSPs in the United States, the push for a more formalized development structure and recognition as a legitimate profession is a priority for NADSP, which actively works on advocacy and policy initiatives to achieve this goal.

In this episode of the IDD Health Matters Podcast, host Dr. Craig Escudé welcomes Valerie Bradley, a pioneer in the intellectual and developmental disabilities (IDD) field. Valerie is the president and co-founder of the Human Services Research Institute (HSRI), an organization dedicated to advancing policies and practices in human services. With over four decades of experience, Valerie has been at the forefront of deinstitutionalization efforts, working to move individuals with IDD from large institutions into more community-based, supportive environments. Her expertise and passion for improving the quality of life for individuals with disabilities have earned her a significant reputation in the field.

During the conversation, Valerie reflects on the successes and ongoing challenges of deinstitutionalization, particularly the transition from large institutional settings to smaller community homes. While progress has been made in creating residential and employment supports, Valerie notes the initial missteps of replicating institutional models in smaller settings and the importance of fostering truly integrated community living. She also highlights the impact of the Centers for Medicare and Medicaid Services (CMS) Settings Rule, a landmark policy change that has advanced the rights of individuals with IDD to live more independent and self-directed lives.

The discussion delves into broader systemic issues, including the workforce crisis in the caregiving profession and the need for enhanced training and support for Direct Support Professionals (DSPs). Valerie emphasizes the value of self-direction for individuals with IDD, enabling them to take control of their own care and use personalized budgets to hire staff. Her insights provide a long view of the field, tracing its evolution and underscoring the need for continued progress to ensure equitable healthcare and meaningful community inclusion for people with IDD.