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Grief, Loss and End-of-Life

Why This Is Important

This department addresses many different issues related to grief, loss, and the end of life. First, even though the topics of health, palliative care and end of life issues are important for everyone, people with disabilities have often been left out of these very important discussions for themselves. It has been assumed that family members or professionals are the ones that know what is “best” for them, or that they are not capable of making important decisions such as how and where they want to be treated at the end of life. Do they want to stay at home, or die in a hospital? What about the extent of care? Does the person want everything possible done in order to prolong life or not? To what extent should palliative care be provided? How can the person in this situation be assisted to best deal with it? A person centered approach that honors self-determination dictates that these sensitive areas of life also include choices for the person with disabilities just as for anyone else.

Secondly, people with disabilities face grief issues when family members or others around them pass away. This department has resources for assisting people through such difficult times.

Lastly, family members and others who love people with disabilities face grief issues when their loved one encounters very complex health issues and/or passes away. Sometimes these issues arise when the person is quite young, or even an infant.
 
 
 

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.
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