It's difficult to think of our own death, much less the passing of a loved one. According to the Conversation Project, more than 90% of us think it's important to discuss end-of-life wishes, yet only a fraction of us do it.

Those conversations happen even less frequently and it's often a taboo topic, especially among medical professionals and care providers for people with an intellectual and/or developmental disability. (IDD)

Approximately 7 to 8.5 million people in the U.S. have an intellectual and/or developmental disability (IDD), representing about 3%–5% of the total population, and they are often not at the table for end of life discussions. Why is that?

In this episode of Grave Concerns, host Cathy Wurzer dives head-long into the conversation with three guests who have helped people in the IDD community talk about their mortality and why they need to be included in these conversations.

Sarah Hall is a researcher at the University of Minnesota. She was joined by Sue Walker and Cate Saracen-Peters from Hammer and NER, one of the largest disability service providers in Minnesota.

Some of the resources discussed in this episode are here: https://www.caresearch.com.au/tel/

https://ageucate.com/

https://hammer.org/together-we-ensure-tomorrow/aging-well-end-of-life-care/

End in Mind Project is a not-for-profit, so if you've learned something or felt something when listening to this podcast and want to support more episodes and the rest of our work, please visit: www.endinmindproject.org.

Thanks for listening!