Performance Improvement 2009. What Concerns, Perspectives and Values Do People With Disabilities Have About Advance Care Planning?


This study sought to learn the best way to promote the use of advance directives among adults as a means of specifying their wishes about end-of-life care. A part of the study included topic commissioned papers. This review examined the current status of advance directives and advance care planning in the disability community. The author reviewed professional literature, consumer materials and internet sites pertaining to advance care planning and end-of-life care for people with physical and intellectual disabilities.

The author found that the concerns, perspectives, and values of people with disabilities have often been overlooked in the research, programs, and policies regarding advance directives, advance care planning, and end-of-life care more generally. While the process for advance care planning for people with physical and intellectual disabilities is the same as for non-disabled people, there are unique community perspectives and issues to be addressed in policies seeking to promote such plans.

Report Title: Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities
Agency Sponsor: ASPE-ODALTCP, Office of Disability, Aging, and Long-Term Care Policy
Federal Contact: Judith Peres, 202-690-6443
Performer: Yeshiva University
PIC ID: 8905

View full report


"PerformanceImprovement2009.pdf" (pdf, 1.26Mb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®