Health disparities within the general population are garnering increasing levels of attention (Braveman & Gruskin, 2003). As more attention is drawn to health disparities in the general population, data also show that individuals with disabilities experience greater differences in health (Kirschner, Breslin, & Iezzoni, 2007). Within this disability population is a subpopulation of individuals who have intellectual and developmental disabilities (ID/DD). Recent studies suggest that individuals with ID/DD experience lower rates of quality, preventive health care (Kerr, Richards, & Glover, 1996; Lewis, Lewis, Leake, King, & Lindemann, 2002) and higher rates of comorbid, chronic conditions, such as heart disease and cancer, and secondary conditions, such as bowel obstruction, than the general population (Krahn, Hammond, & Turner, 2006; Sohler, Lubetkin, Levy, Soghomonian, & Rimmerman, 2009).
Even as the health needs of individuals with ID/ DD are unveiled, few health professionals have direct training and experience with this population. As a result, individuals with ID/DD experience difficulties accessing high-quality health care. This study used focus group and key informant interviews to identify health care inequalities and inequities experienced by adults with ID/DD (self-advocates). This article presents findings based on the self-advocate, parent/guardian, and health professional respondents' experiences.
People with disabilities accounted for 54 million individuals in the United States in 2005 (Office of the Surgeon General, 2005). This figure includes a wide variety of individuals from various demographic backgrounds and with a range of disabilities. Within this larger number, it is estimated that about 7 to 8 million individuals, or 3 percent of the population, have an ID or DD (Ouellette-Kuntz, 2005; President's Committee for People with Intellectual Disabilities, 2009).
ID is characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability, previously referred to with the stigmatizing term "mental retardation," originates before the age of 18 (American Association on Intellectual and Developmental Disabilities, n.d.). IDs are often grouped with DDs, which are defined as mental or physical "impairments" affecting daily functioning in three or more areas, such as self-care, expressive language, and mobility (Centers for Disease Control and Prevention, 2004). DDs manifest before age 22 and include different conditions, such as autism, epilepsy, and cerebral palsy.
The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities (Office of the Surgeon General, 2005) noted the challenges individuals with disabilities face in obtaining quality health care: communication, social barriers, mobility, and accessibility. Moreover, individuals with ID/DD often face cognitive challenges in understanding or recognizing their own health problems, communicating their needs to appropriate health care professionals, and understanding and adhering to health and behavioral treatments.
In addition to individuals with ID/DD experiencing cognitive and communication limitations, their need for accommodations is often overlooked as health systems become more complex and insulated (Drainoni et al., 2006; Havercamp, Scandlin, & Roth, 2004). The U.S. surgeon general (Office of the Surgeon General, 2002) highlighted the huge shortfalls in meeting this population's health care needs. One major concern is the shortage of qualified, trained health care professionals in the community with in-depth knowledge of the specialized health and mental health needs of this population (Hayden, Kim, & DePaepe, 2005; Krahn et al., 2006). Individuals who live in rural or innercity communities face a far greater effect from the absence of skilled health care professionals because, among other reasons, it is difficult to recruit health providers to those areas (Iezzoni, Killeen, & O'Day, 2006; Reichard, Sacco, & Turnbull, 2004). …