Chapter One - Understanding and Improving Care for Individuals with Intellectual and Developmental Disabilities in the Emergency Department

Abstract

Abstract Individuals with intellectual and developmental disabilities (IDD) represent one of the most complex, poorly understood, and under-researched patient populations. The objectives of this review are threefold: (1) first, we provide an overview of existing research on patterns and predictors of emergency department (ED) use among persons with IDD. Population-based studies suggest that individuals with IDD are more likely to visit EDs and to visit more frequently for both physical and mental health issues. We also discuss the predisposing, enabling, and clinical need factors that contribute to emergency service utilization in this population. (2) The second objective is to summarize what is known about the care received by individuals with IDD in the ED. Qualitative research suggests that the care provided is suboptimal from the perspective of patients, their families, and ED health-care providers, with multiple barriers. (3) The final objective is to describe interventions to improve emergency care for persons with IDD, including a pilot evidence-informed approach to implementing practice change in the ED. Our ongoing work is revealing important barriers and enablers to practice change including a discomfort of staff to identify patients with suspected IDD, challenges in developing a system to flag patients with IDD in the ED, the need for educational resources to help adapt their communications and general approach to patients with IDD, and the need to develop and embed tools within the ED care pathway to assist in providing discharge instructions. Crowding and resource limitations within the ED setting may further exacerbate these care challenges and heighten the importance of facilitation in achieving practice changes.