Approximately 7 million people are living with intellectual and developmental disabilities (IDD) in the United States. Although each individual with IDD is unique, and care of patients with IDD requires knowledge of certain conditions, the healthcare considerations for this population are readily identifiable. Healthcare workers should be well-equipped with this knowledge to provide excellent care to a growing population of patients with IDD.
Patients with IDD — which includes those diagnosed with Down syndrome, autism spectrum disorder or cerebral palsy — often experience suboptimal care. Health professionals receive little training on how to care for this population, and health systems are poorly connected to the complex network of community services available to people with IDD.
Carl Tyler, MD, and Sandra Snyder, DO, received a Caregiver Catalyst Grant in 2020 for their “Building Bridges” project. The goal? Develop educational resources for interacting with adults with IDD, in consultation with people with IDD and community organizations that serve them. Dr. Tyler and Dr. Snyder sought to train caregivers in disabilities etiquette and respectful, patient-centered communication that recognizes the diversity and dignity of individuals in the IDD community, who in turn can teach health systems a great deal about providing more respectful, comprehensive and effective care.
The “Building Bridges” team produced an educational video in which adults with IDD and their caregivers share stories about interactions with healthcare professionals. Created in collaboration with the Center for Excellence in Healthcare Communication, the video highlights behaviors that build strong connections with patients. Dr. Tyler and Dr. Snyder also have developed print literature, including clinical assessment tools and a pre-visit phone template for gathering critical information about new patients with IDD. The team is working with Michael Nelson, PhD, and Laura Greenwald, MBA, MEd, on an e-learning module about better care for the IDD population.