End of Life Issues for Individuals with IDD

From the American Association on Intellectual and Developmental Disabilities

Be Prepared sign with arrow pointing toward horizon.

End of Life: Issues and Resources for People with Intellectual Disability and Caregivers

Date: January 23, 2019
Time: 1:00 p.m. – 3:00 p.m. PST

Webinar Overview

Think about not being told that a close family member has died. Picture not being invited to the funeral. Then imagine that no one will talk to you about the death or explain what happened. Sadly, a number of people with intellectual disability have faced such distressing circumstances.

For over ten years, Australian researchers Professor Roger Stancliffe and Dr. Michele Wiese have collaborated on a growing body of research that examines end-of-life issues for people with intellectual disability and their caregivers. They discovered that, when it comes to dying and death, many people with intellectual disability are confronted with a benign conspiracy of silence.

In this webinar, Roger and Michele will address these issues and what can be done about them, by:

  1. Describing major research findings about understanding and planning for end of life by people with intellectual disability.
  2. Presenting key results from their controlled intervention study which trained disability support workers to teach people with intellectual disability about dying and death, and evaluated the outcomes. These findings include data on whether having repeated conversations about end of life affects outcomes such as depression, anxiety, or fear of death among participants with intellectual disability.
  3. Introducing and demonstrating a major new, free online resource Talking End of Life (TEL) …with people with intellectual disability https://www.caresearch.com.au/TEL/ TEL is designed for users to gain the knowledge, skills, resources and confidence to help people with intellectual disability understand and plan for end of life.


Roger J. Stancliffe, PhD FAAIDD, FIASSIDD
Michele Y. Wiese, PhD, MAPS


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