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Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities

Authors: Gary L. Stein, J.D., M.S.W.


This paper walks through the many things to consider as a person with disabilities sets-up advance directives regarding health issues. Advance directives are legal documents usually prepared by an attorney that outlines the types of life-prolonging care the person wants. They are prepared to guide others in case the person becomes unable to make and/or communicate their choices.

This report addresses considerations common to people with physical disabilities, with an emphasis on right-to-treatment/right-to-life issues sometimes overlooked when a person has a significant physical disability. In a separate chapter, the issues that commonly arise as advanced directives are prepared with/for a person with intellectual disabilities are reviewed, with an emphasis on deciding when and how the person can be involved in the process. The final two chapters are a bit more "cutting edge" in reviewing the current "gaps and barriers" and "trends" in assisting people with disabilities to set-up advance directives. A few of these are highlighted below:

- Research and guidelines for assessing decisional capacity – An identified barrier was the lack of strategies for determining when and how people with intellectual disabilities can be involved in making decisions in this area. The report observes: “Balancing respect for autonomy and self-determination among people with intellectual disability with protection of vulnerable individuals from harm is a most difficult challenge. There are needs for research and practice guidelines to assist……”

- Conflict management –Another gap noted was a lack of conflict management materials and strategies. As discussion of end-of-life decisions for people with intellectual disabilities become more common, so do differences among those who are involved with a person. From the report: “End-of-life choices present complicated dilemmas for patients, surrogates, families, health care providers, administrators, policymakers, and the legal system……”

- Outreach on advance care planning – An emerging trend identfied is an increased awareness of end-of-life issues and people with disabilities. From the report :“Many organizations advocating on behalf of people with disabilities recognize the importance of advance directives to provide evidence of an individual’s preferences for end-of-life decisions…….”

Excerpts above copied from the full text of report as viewed online on 12/7/2010 (aspe.hhs.gov/daltcp/reports/2007/adacp.pdf)

Contact Info:
Title:Office of the Assistant Secretary for Planning and Evaluation
Organization:US Department of Health and Human Services
Address:200 Independence Av, SW
Washington, DC 20201

Web Links

Download the Report (PDF)

Read the report online in HTML format

Home page of the Office of the Assistant Secretary for Planning and Evaluation

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