A Good Doctor is Hard to Find: A Grounded Theory Study of the Health Care of People with Intellectual Disabilities in the United States

One of the greatest triumphs of modern medicine was the extension of life expectancy for people with intellectual disabilities. People with conditions like Down syndrome, who would once have died in childhood, now live to old age. However, this achievement has not been matched by similar improvements in this population’s health. People with intellectual disabilities have notably worse health than the general population, and they often receive worse medical care. While these disparities are well-established, their causes are not fully understood. The lack of data regarding these patients’ experiences in the United States health care system hampers attempts to improve their health care. In this thesis, I use grounded theory to explore the lived experiences of the major stakeholders in the health care of people with intellectual disabilities: patients, caregivers, and medical professionals. Conversations with twenty-five stakeholders provided insight into the experiences of people with intellectual disabilities in the United States health care system. Participants shared stories of contemptuous malpractice, deep friendship, and structural barriers to better health care. Based on their accounts, I describe what physicians must be, know, and do in order to appropriately treat these patients.