Research

Administrative History

In November 2004, the Office of Mental Retardation and Developmental Disabilities applied for and was awarded a two-year grant from the Developmental Disabilities Planning Council (DDPC) to study Prader-Willi Syndrome (PWS) and its effects, and also "to develop and demonstrate a comprehensive approach to the identification, assessment, and intervention training for individuals with Prader-Willi Syndrome, their families, and their care givers." Known as the Prader-Willi Demonstration Project (PWSDP), the grant project's stated objectives were to improve identification and diagnosis of individuals with PWS in New York State; improve understanding of existing services and to identify other promising services as additional options for person dealing with PWS and their families; and to enhance the ability of the development disabilities services system, community and health services to more effectively serve persons with PWS.

The PWSDP also sought to include and promote principles of individualized, person-centered services for people with PWS; promote collaboration among agencies (governmental and not-for-profit); and include parents, individuals with PWS, and practitioners in these efforts.

The Office of Mental Retardation and Developmental Disabilities (OMRDD) had begun preliminary fact-finding on PWS in the late 1990s, well before the grant had been submitted for this project.