Increasing end of life care access for individuals with intellectual and developmental disabilities

Project (M.S.W., Social Work)--California State University, Sacramento, 2012.This descriptive study identified and prioritized resources desired by professionals for inclusion in a toolkit to support access to palliative and end of life care for individuals with intellectual and developmental disabilities (IDD). A non-random sample of 28 medical, palliative care, hospice and case management professionals across four rural northern California counties completed a survey identifying priorities for information to assist in their efforts to identify needs and refer individuals with IDD to palliative and end of life hospice care. Results of the study indicate that the highest priority of information identified by the respondents is information supporting assessment and communication with individuals with intellectual and developmental disabilities. Additionally, the need for information regarding sharing diagnosis, discussing treatment and end of life processes was indicated as pertinent for supporting this population. Implications of the study indicate a need for a social justice and ethics framework to guide social workers to initiate early discussion and promotion of palliative and end of life care, and facilitate person centered planning for individuals with IDD as a means to increase access to services for which they are historically denied.Social Wor