Optimizing Care Systems for People with Intellectual and Developmental Disabilities

Approximately 7.4 million people in the United States live with an intellectual or developmental disability (IDD), defined by the Centers for Disease Control and Prevention as "a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person''s lifetime." Individuals with IDD and their caretakers face exceptional barriers to staying healthy and accessing appropriate health services. Among these barriers are difficulty finding care providers that are adequately trained in meeting their specialized needs, unwieldy payment structures, and a lack of coordination between the various systems of care with which patients with IDD may interact (e.g., education, social work, various segments of the health care system).

The National Academies of Sciences, Engineering, and Medicine hosted a workshop to discuss promising innovations in (1) workforce development, (2) financing and payment, and (3) care coordination; and to share visions for improved systems of care. Participants noted that while many existing approaches could serve as models for improving care, large changes will need to be made in these 3 facets of the care system in order to make them accessible to all IDD patients. This publication summarizes the presentations and discussions of the workshop.