The resource linked below is a guidebook from the National Down Syndrome Society (NDSS). According to the Introduction, the aim of the guidebook is to "provide guidance for the crossroads and decisions that arise in later life and at the end of life."
NDSS requires users to provide their name, email address, city, and state to download the resource.
End-of-Life and Down Syndrome Guidebook .png "opens in new window")
Table of Contents
Introduction
Aging and Down Syndrome Overview
Promoting Dignity and Choice
Thinking Ahead
Proactive Planning
Advance Directives and Decision-Making
Considering Brain Donation
Late-Stage End-Of-Life Care
Death, Grief, and Coping
Conclusion