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.
In this IDD Perspectives webinar episode Dr. Craig Escudé and behavior analyst Ley Linder discuss the five core functions of behavior—access to items/activities, access to attention, escape, avoidance, and sensory/autonomic reinforcement—and emphasize that behaviors are typically multi-functional and require multidisciplinary approaches for effective support. They highlight the importance of recognizing behavioral changes as potential indicators of underlying medical issues, warning against diagnostic overshadowing. The conversation also stresses the value of empathy, human connection, and the critical role of direct support professionals in identifying subtle behavioral shifts. Practical tools, such as pattern recognition and the "duck philosophy" (favoring simple explanations first), are recommended to improve care and reduce unnecessary suffering.
Dr. Jack Dillenberg is a pioneering figure in public health and dentistry, known for founding the Arizona School of Dentistry and Oral Health with a focus on service, public health, and underserved communities. His career spans impactful roles including state health director in Arizona, global health work in Jamaica and India, and advocacy for individuals with intellectual and developmental disabilities. He championed innovations like tele-dentistry, dental therapy, and nutrition education in dental care, and collaborated with figures like Mother Teresa and Major League Baseball to promote health equity. His upcoming book, You Don't Know Jack, But You Should, captures his remarkable journey and lifelong commitment to making a difference.
This IDD Health Matters podcast features a conversation between Dr. Craig Escudé and Ley Linder, focusing on a collaborative initiative called "Unlocking Behaviors." This project, inspired by Dr. Rick Rader, aims to bridge the gap between medical and behavioral approaches when evaluating challenging behaviors in individuals with intellectual and developmental disabilities (IDD). The discussion emphasizes the importance of integrated healthcare, where medical, mental, oral, and behavioral health professionals work together to uncover the root causes of behaviors that may initially seem purely psychological but often have underlying medical explanations. Both speakers highlight the critical role of direct support professionals, who, despite lacking formal training, possess deep knowledge of the individuals they care for and can provide essential observational insights. The conversation also addresses the lack of formal training in both medical and behavioral fields regarding the intersection of health and behavior, advocating for ongoing education and openness to interdisciplinary collaboration.
Dr. Anthony Rodriguez, featured on the IDD Health Matters podcast during the 2025 AAIDD Conference, shares his journey from a finance major to a full professor at Providence College, driven by a passion for supporting individuals with intellectual and developmental disabilities (IDD). His work blends mathematics education with advocacy, focusing on financial literacy and scam prevention to empower people with IDD. He highlights the importance of community-based research, peer mentoring, and storytelling as tools for growth and connection. As the incoming president of AAIDD, Rodriguez aims to foster collaboration among fellows and celebrate the organization's upcoming 150th anniversary, emphasizing unity, calm, and shared expertise in advancing health equity.
This IDD Perspectives webinar episode features Dr. M. Dian Chin Kit-Wells, a board-certified pediatric dentist and president of the American Academy of Developmental Medicine and Dentistry. The discussion centers on the most common dental health concerns affecting individuals with intellectual and developmental disabilities (IDD). Topics include the systemic importance of oral health, gum disease, halitosis, tongue abnormalities, enamel erosion, and bruxism. The conversation emphasizes the connection between oral and overall health, the impact of medications, and the role of caregivers in maintaining dental hygiene. Practical advice is offered on prevention strategies, including brushing, flossing, dietary choices, and the use of baking soda. This episode also highlights resources and organizations that support dental care for people with IDD, advocating for interdisciplinary collaboration and education. You can find the free handout mentioned during the webinar at https://replacingrisk.com/webinars/. All webinar handouts are located at the bottom of the page.
Rebecca Enders discusses supports and services for individuals with intellectual and developmental disabilities. Rebecca, a board-certified case manager and director of case management at Optimal Health Care in Maryland, outlines the importance of coordinated services, including Medicaid waivers, community integration, and support across the lifespan. Having transitioned from a 15-year career in education, Rebecca found renewed purpose in case management, eventually developing a data-driven acuity model called Atlas Acuity. This system assesses client needs using weighted metrics to calculate an acuity score, guiding the assignment of caseloads and preventing case manager burnout. Her approach emphasizes time allocation and service equity, empowering professionals to deliver meaningful care while sustaining well-being and effectiveness within the field.
Carol Price Guthrie has spent over three decades working in the field of intellectual and developmental disabilities (IDD), beginning as a direct support professional in Tennessee. Her career journey includes roles in case management, program development, and managed care, with experience founding her own case management agency and contributing to projects at UnitedHealthcare. Currently, she serves as Senior Director of Waiver and Program Development at StationMD, a telehealth company specializing in medical services for individuals with IDD. Guthrie is deeply committed to health equity, advocating for specialized, ongoing training and personalized support that enables people with IDD to access community-based services and live with dignity and independence.
Jean Phelps, CEO of Encompass Human Services, passionately advocates for expanding awareness and accessibility in services for individuals with intellectual and developmental disabilities. Her organization offers a wide range of supports, including residential, day, employment, and brain injury services, all designed to integrate individuals meaningfully into their communities. Jean emphasizes that the core qualifications for becoming a direct support professional are the everyday skills people use to live their own lives, coupled with a genuine spirit and desire to help others. She believes career growth within the field should be nurtured and supported, even if that means mentoring someone who eventually leaves for a leadership role elsewhere. Through her own story—beginning with a transformative summer camp experience—Jean illustrates the deep personal and professional fulfillment found in this field and highlights the critical need for grace, individual empowerment, and space to learn through missteps.
Dr. Susan Haverkamp, featured on the IDD Health Matters podcast, discusses her work on improving health equity for adults with intellectual and developmental disabilities (IDD). She highlights the lack of reliable national health data due to insufficient identification methods and advocates for simple survey questions to address this gap. Haverkamp also shares her role in creating core healthcare competencies through a Delphi study, stressing the importance of understanding the social model of disability, improving clinician communication and clinical skills, and recognizing implicit biases. She emphasizes recent progress in medical education, growing community-engaged research, and the need to mentor future healthcare providers. Her final advice includes listening to people with IDD, investing in students, and addressing mental health vulnerabilities within the IDD population.
In this episode of the IDD Health Matters podcast, Dr. Craig Escudé interviews Sharon Gomez, a passionate advocate and leader in the field of intellectual and developmental disability (IDD) services. Sharon shares her lifelong dedication to supporting individuals with IDD, tracing her journey from youth volunteerism with The Arc to executive leadership roles, including at Evergreen Life Services. She discusses the impact of landmark legal cases like the Gary W. lawsuit on improving community-based care and highlights ongoing challenges in healthcare access for people with complex medical needs. Sharon emphasizes the importance of properly trained healthcare professionals, the vital role of frontline staff, and the power of community in promoting equity and quality of life. The conversation also touches on the value of the American Association on Intellectual and Developmental Disabilities (AAIDD), professional growth within the field, and the human side of health advocacy. This episode was recorded before the passing of IntellectAbility founder, Karen Green McGowan, who is mentioned in this episode.
In this episode of IDD Health Matters, host Dr. Craig Escudé interviews A.J. Forster, a professional with over a decade of experience supporting individuals with intellectual and developmental disabilities (IDD). Forster shares his journey from working in finance to becoming passionate about serving the IDD population through direct support and leadership roles. Now at Tarrytown Pharmacy, he helps streamline medication services for IDD providers, aiming to relieve the burden on nurses and staff by coordinating refills, prior authorizations, and emergency prescription needs. He emphasizes the importance of interdisciplinary teams, especially in managing psychotropic medications with regular reviews to avoid unnecessary treatments and reduce side effects. Forster also highlights the value of direct support professionals, advocating for better pay and recognition, and underscores the need for emergency preparedness across care systems. Throughout, the conversation spotlights collaboration, proactive care, and a mission-driven approach to improving the lives of people with IDD.
In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Wesley Anderson, Director of Employment and Community Services at the National Association of State Directors of Developmental Disabilities Services (NASDDDS). Live from Salt Lake City, they dive deep into the critical connection between employment and health outcomes for individuals with intellectual and developmental disabilities (IDD). Wesley discusses his work co-leading the State Employment Leadership Network, a collaborative effort with 26 U.S. states aimed at integrating employment across all levels of support systems. Learn how employment isn't just about earning a paycheck—it's a powerful social determinant of health that affects access to food, healthcare, transportation, social inclusion, and overall wellbeing. From dismantling common misconceptions about hiring people with disabilities to explaining how employers can access support services at no cost, Wesley delivers actionable insight for businesses, caregivers, and policymakers alike. He also shares his personal journey into the field and offers three powerful takeaways for anyone looking to make a difference in the IDD community. Whether you're an employer, advocate, support provider, or simply curious about how inclusive employment can shape lives, this episode will expand your understanding and inspire you to act. 🎧 Listen now to explore how meaningful employment supports not just independence—but health, dignity, and community connection.
In this powerful episode of IDD Health Matters, Dr. Craig Escudé welcomes Kathryn Pears, Chief Operations Officer of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). With over 40 years of experience in the field of dementia, Kathryn shares her personal and professional journey, beginning with her father's early-onset Alzheimer's diagnosis, and how it ultimately led her to advocate for individuals with intellectual disabilities who are aging and at risk for dementia. Kathryn discusses the groundbreaking work of the NTG, including their development of the Early Detection Screen for Dementia (NTG-EDSD)—a free, intuitive tool used nationwide to help caregivers identify subtle changes that could indicate early signs of dementia in people with IDD. She also dives into NTG's national curriculum, which has trained thousands of frontline staff, healthcare professionals, and even law enforcement on how to provide compassionate, effective care for aging individuals with IDD and dementia. From federal advocacy and workforce training to innovative partnerships in Texas aimed at improving emergency responses, Kathryn and the NTG are changing the landscape of aging and dementia care for this often-overlooked population. Tune in to learn three key takeaways from Kathryn's decades of experience: Don't assume behavioral changes equal dementia—rule out treatable conditions first. The heart of quality care is treating others the way you'd want to be treated. You don't need to be an expert—just be informed enough to advocate. Visit www.theNTG.org to access free resources, publications, and tools mentioned in this episode.