Resources for Adult Siblings: Death and End of Life Care

My Life, My Wishes: Sharing My Journey. Sonoran UCEDD, The University of Arizona. This workbook helps people write about things that are important to them, identifies the decisions that need to be made, and includes health care options to discuss with health care providers. It can be downloaded by clicking here.

Thinking Ahead: My Way, My Choice, My Life at the End. (2009). A workbook and DVD for people with DD. California Department of Developmental Services. This is a consumer friendly workbook to assist people in making decisions about the end of their life. This workbook and DVD were funded by a 2006-07 DDS Wellness grant. The workbook can be downloaded here at no cost. This resource is available in English, Spanish, and Chinese.

People Planning Ahead: A Guide to Communicating Health Care and End of Life Wishes (2009). by Leigh Ann Kingsbury, AAIDD. People Planning Ahead provides a comprehensive and structured way to ensure that loved ones receive care respecting their wishes and conforming to their personal, cultural, and religious beliefs during times of chronic and terminal illness, or severe disability. For more information, click here.

American Bar Association Commission on Law and Aging has three good resources on health care advance planning.

  1. Consumer’s Tool Kit for Health Care Advance Planning
  2. Making Medical Decisions for Someone Else: A How-To Guide
  3. Myths and Facts About Health Care Advance Directives