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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.



Description:

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
  
Phone:202/690-7858
E-mail:sherry.Glied@hhs.gov
  

Web Links

https://aspe.hhs.gov/system/files/pdf/75361/adacp.pdf
Download the Report (PDF)

https://aspe.hhs.gov/basic-report/advance-directives-and-advance-care-planning-people-intellectual-and-physical-disabilities
Read the report online in HTML format

aspe.hhs.gov/_/index.cfm
Home page of the Office of the Assistant Secretary for Planning and Evaluation


This information was found at www.qualitymall.org