IDD Health Matters

Dr. Paca Lipovac, a longtime leader in the developmental disabilities field, shares how a personal connection—her niece's disability—drew her into a 26‑year career dedicated to improving care for people with intellectual and developmental disabilities (IDD). She describes her work overseeing highly complex, medically fragile populations at Richmond Community Services, emphasizing the importance of creating "enviable lives" that mirror the dignity and opportunities anyone would want. Lipovac highlights major systemic challenges, including an expensive and fragmented U.S. healthcare system, inadequate Medicaid reimbursement, and a lack of provider training in IDD care, all of which limit access to necessary services. To address staffing shortages and improve care quality, she outlines innovative solutions such as partnering with colleges to train her own nurses and recruiting international direct support professionals, achieving strong retention and better continuity of care. She concludes with core principles for improving the field: treat people with disabilities first and foremost as people, act with deep respect, and build supportive "village-like" communities that foster meaningful relationships and better lives.

Dr. Rachael Sweeney and Dr. Amy Curtis from Auburn University's College of Nursing, discuss their work improving health care education for people with intellectual and developmental disabilities (IDD). They describe the lack of training nurses typically receive in communicating with and caring for individuals with IDD, sharing personal experiences that motivated their advocacy. To address this gap, they integrated IDD‑focused curriculum across undergraduate through doctoral nursing programs and partnered with community organizations for hands‑on clinical exposure. They also introduced "Gwen," a highly realistic pediatric simulation mannequin with Down syndrome, to help students practice communication, assessment, and compassionate care. Their efforts aim to reduce stigma, improve patient outcomes, promote interdisciplinary understanding, and inspire future providers to treat people with IDD with empathy, dignity, and individualized care.

In this episode, Danielle Terrell discusses her personal and professional journey working with individuals with intellectual and developmental disabilities (IDD). Danielle describes how her background in psychology, early community experiences, and roles as a direct support professional, ABA therapist, and transition specialist shaped her passion for advocacy and health equity. She highlights the complex healthcare and mental health challenges faced by children and adults with IDD, including real-life case examples that underscore gaps in provider training and support systems. The conversation also explores her international advocacy work in countries such as India, Kenya, and Tanzania, where she helped raise awareness, build services, and support families, revealing that barriers to care are global. Danielle concludes by sharing three guiding principles—saying yes to opportunities, learning directly from people with disabilities, and being bold in advocacy—to promote a world where people with IDD are supported not just to survive, but to truly thrive.

In this episode, care manager Liz Zaso shares how growing up in a family deeply involved in supporting people with intellectual and developmental disabilities shaped her passion for the field. Influenced by her parents' careers, her cousin with cerebral palsy, and early experiences with inclusion, Liz discusses the importance of training direct support professionals, advocating for equitable health care, and empowering individuals by focusing on their strengths. She highlights ongoing systemic challenges, including staffing shortages and inadequate provider education, while also celebrating the progress made in inclusion and global awareness. Liz offers examples from her career—such as supporting individuals pursuing meaningful goals—and emphasizes the need for community integration, advocacy, and positivity. The episode also acknowledges her nomination for the Annie Sullivan League Award, recognizing her dedication to improving the lives of people with IDD.

This IDD Health Matters episode features Adam Chittam, a pharmacist specializing in long-term care for individuals with intellectual and developmental disabilities (IDD). Chittam explains that his organization, Tarrytown XPO Care Pharmacy, uniquely serves only the IDD population, which often faces complex medication regimens and polypharmacy—commonly 13–15 medications compared to four in the general population. He highlights the risks of drug interactions, the challenges of managing side effects, and the importance of avoiding unnecessary medications by addressing underlying causes of behaviors rather than attributing them solely to disability. Cheatham emphasizes education for caregivers, proper medication administration through compliance packaging, and the critical role pharmacists play in clinical teams to ensure safety and improve outcomes. He concludes by advocating for consistency, awareness of side effects, and engagement in this rewarding field.