Intellectual Disability and the American Medical Welfare State

Award Year:
Harold Pollack
This project explores the accomplishments and shortcomings of the American medical welfare state in assisting individuals and families affected by intellectual disabilities. To highlight the specific policy challenges posed by different disabilities, the project focuses on three common genetic conditions associated with intellectual disability: Phenylketonuria (PKU), Down syndrome, and fragile X syndrome. The project has two intertwined strands. The first addresses the social insurance structures required to provide income security and to support important services. Intellectual disability provides a novel lens through which one can see unexpected accomplishments and the shortcomings of the American welfare state. The second strand concerns service delivery and addresses how American medical care and social service systems are now unprepared to address central challenges in this area. Some systemic challenges reflect weaknesses in public financing structures while others reflect organizational shortcomings of medical, social service, and educational systems which are poorly matched with the specific challenges posed by intellectual disabilities.