Priyanka R. Dharampuriya and Susan L. Abend
People with intellectual and developmental disabilities (IDD) face significant challenges in healthcare and have worse health outcomes compared to the general population. IDD, which involves major limitations in both intellectual abilities and everyday functioning, affects less than 3% of people but is the third highest risk factor for COVID-related deaths in the U.S. On average, individuals with IDD live 20 years less than others, with nearly 40% of their deaths due to preventable causes. They are twice as likely to have unmet health needs, receive fewer preventive care services, and often experience missed or incorrect diagnoses. Adults with IDD are more likely to suffer from obesity, diabetes, low bone density, and other health issues than those without IDD. Because of these significant healthcare disparities, the American Medical Association has recommended that people with IDD be considered a Medically Underserved Population.
Research in the U.S. and around the world has consistently identified two main reasons for health and healthcare issues in people with intellectual and developmental disabilities (IDD), both related to problems with sharing information. First, healthcare providers often struggle to communicate with patients who have IDD, making it hard to understand their needs. Second, more than 90% of primary care providers, psychiatrists, and nurses report that they lack the skills and information needed to provide proper care for these patients. While some specialized clinics in the U.S. address the health needs of the IDD community, most healthcare providers don't have the expertise to manage common health issues in this population, like frequent pneumonia, severe constipation, or abuse. Additionally, there's no standard way to ensure that healthcare providers have accurate health history information when they need it to make proper assessments.