Quality Mall Product: Advance Directives and Advance Care Planning for People with Intell...
Quality Mall Home Page

Product Links

Email this Product E-mail this product

Printable Copy Printable Copy

Sign up for Product Alerts Sign up for new product alerts

Located in This product is located in:

  Person Directed Services, Life and Future Planning, Family Place, Health and Safety

  Self-Determination, Aging, Grief, Loss and End-of-Life
Advanced Search
Know something that belongs in the Mall? Nominate it
Product Information Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities

Highlights   Full Description   How to Obtain/Whom to Call   Web Links  
 Full 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)
Is the information for this product outdated or incorrect? Please notify us

This web site is maintained by the Research and Training Center on Community Living with support from the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute and the Administration on Intellectual and Developmental Disabilities. E-mail weste050@umn.edu.
©2008 by the Regents of the University of Minnesota.
The University of Minnesota is an equal opportunity educator and employer.

Online Privacy Policy