Health Disparities in the end-of-life care of people with intellectual and developmental disabilities

There are over 4 million people in the United States with an intellectual and/or developmental disability (I/DD). Most people with I/DD have a life expectancy comparable to that of the general population; however, they experience unique barriers to accessing and receiving care at the end of life. Care for critically ill adults with I/DD becomes more complicated as their medical needs increase and they must interact with professionals in hospitals and nursing homes who lack experience working with the I/DD population. For individuals who continue to be cared for in family or group homes, caregivers often have little or no experience with caring for someone at the end of life. The purpose of this qualitative, exploratory study is to describe end-of-life care for people with I/DD as experienced by their family and staff care givers, and by adults with I/DD who have lost someone close to them. In this paper, we will present focus group and individual interview data exploring the health disparities experienced by individuals with I/DD at the end of life as perceived by their family and staff caregivers. Caregiver recommendations for improvements to end-of-life health care delivery will be described. Finally, gaps in our current understanding and areas for future research will be identified. In the United States, people with I/DD at the end of life are one of the most vulnerable groups of citizens. Through continued community-based research with individuals with I/DD and their family and professional caregivers, we may begin to eliminate these inequities.