A cascade of disparities: Health and health care access for people with intellectual disabilities

Abstract

People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.

Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation

“…Unfortunately, adults with intellectual or developmental disabilities frequently face many barriers to accessing health care and receiving recommended treatments for common problems. 17,[36][37][38][39][40] Thus, clinical recognition of these conditions becomes even more critical to providing comprehensive care to adults with ASD.…”

Monitoring the prevalence of severe intellectual disability in children across Europe: feasibility of a common database

“…In spite of the fact that all member states of the European Union have ratified the United Nations Convention of the Rights of the Child and most have signed the United Nations Convention on the Rights of Persons with Disabilities, the health needs of these children are still inadequately served. 1 The reduction in health inequalities and the improvement of health for people with intellectual disability has become a priority worldwide, and in Europe several programmes have had this as a specific aim (e.g. Pomona I, 2002-2004, and II, 2005.…”

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

“…3 Prior studies have documented that people with disabilities face disparities in health and healthcare as compared to people without disabilities. [4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20] Though some studies assessing healthcare disparities for adults with developmental disabilities have included participants on the autism spectrum, with the exception of one small study using administrative data, 21 they do not report results separately for autistic participants. Most studies also primarily include participants with intellectual disabilities, and may not be generalizable to the full range of individuals now recognized as on the autism spectrum, a majority of whom do not have an intellectual disability.…”