New York State Office for People with Developmental Disabilities Division of Service Delivery Upstate Regional Office Prader…

Uncertain.

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.

Records document essential activities of the grant project. Record types include minutes; agendas; meeting files; recordings of task forces meetings, Office of Mental Retardation and Developmental Disabilities (OMRDD) executive staff, and meetings with other related organizations; and annual reports.

Records also include survey responses and evaluations and photographs of persons with PWS and project events, including consent forms. The photographs document individuals who were the study of this project, and events which took place during its course.

Rough folder list is available at the repository.

There are no restrictions regarding access to or use of the material.