COVID-19 Advance Care Planning

A guide for caregivers of adults with intellectual and developmental disabilities

Introduction

This tool guides caregivers of adults with intellectual and developmental disabilities (IDD) through the process of advance care planning regarding possible medical treatments for COVID-19. Advance care planning is a process that promotes person-centred care of patients by clarifying their present goals and values, and their preferences for future health care. For adults with IDD, this process involves the adult’s substitute decision maker, a healthcare provider, and others who know the adult well, whom the adult trusts, and who are willing to support this process.

Download: COVID-19 Advance Care Planning Leave us your feedback Download: Plan Préalable de Soins en cas de COVID-19

Supporting materials
About the tool development

What is Advance Care Planning?

Advance Care Planning is a process that involves thinking about your values and wishes, and letting people know what kind of health and personal care you would want in the future if you were unable to speak for yourself. Speak Up Canada explains more about Advance Care Planning. Watch their video Five Steps of Advance Care Planning.
Social stories

Plain language and visual materials can help in conversations with adults with intellectual and developmental disabilities. Some examples of COVID-19 related social stories are:

Jack plans ahead for coronavirus: A guide for family and carers, by Book Beyond Words, Beyond Words, United Kingdom, 2020
Going to the hospital with COVID-19 , by Surrey Place, Toronto, 2020
When I am in the hospital with COVID-19, by Surrey Place, Toronto, 2020
How to develop an Advance Care Plan

Learn more about Advance Care Planning and how to use this tool in a webinar presented to Project ECHO, Ontario Mental Health at CAMH and The University of Toronto, April, 2020.
Health care decision making

The term Substitute Decision Maker (SDM) is used in Ontario law for the person who would make health and personal care decisions on a person’s behalf when they are unable to do so is. Speak Up Ontario provides information on the substitute decision maker hierarchy and how to identify an SDM in Ontario. Visit Speak Up Canada for similar information in other jurisdictions.

For information on Power of Attorney, download the Power of Attorney Kit from the Ministry of the Attorney General, Ontario

This tool was developed in response to the 2020 COVID-19 Pandemic by the Developmental Disabilities Primary Care Program of Surrey Place, Toronto. The content of this tool was subject to review by Surrey Place clinicians, primary care providers, ethicists and other relevant stakeholders.

Supporting materials
- What is Advance Care Planning?
  
  Advance Care Planning is a process that involves thinking about your values and wishes, and letting people know what kind of health and personal care you would want in the future if you were unable to speak for yourself. Speak Up Canada explains more about Advance Care Planning. Watch their video Five Steps of Advance Care Planning.
- Social stories
  
  Plain language and visual materials can help in conversations with adults with intellectual and developmental disabilities. Some examples of COVID-19 related social stories are:
  
  Jack plans ahead for coronavirus: A guide for family and carers, by Book Beyond Words, Beyond Words, United Kingdom, 2020
  Going to the hospital with COVID-19 , by Surrey Place, Toronto, 2020
  When I am in the hospital with COVID-19, by Surrey Place, Toronto, 2020
- How to develop an Advance Care Plan
  
  Learn more about Advance Care Planning and how to use this tool in a webinar presented to Project ECHO, Ontario Mental Health at CAMH and The University of Toronto, April, 2020.
- Health care decision making
  
  The term Substitute Decision Maker (SDM) is used in Ontario law for the person who would make health and personal care decisions on a person’s behalf when they are unable to do so is. Speak Up Ontario provides information on the substitute decision maker hierarchy and how to identify an SDM in Ontario. Visit Speak Up Canada for similar information in other jurisdictions.
  
  For information on Power of Attorney, download the Power of Attorney Kit from the Ministry of the Attorney General, Ontario
About the tool development

This tool was developed in response to the 2020 COVID-19 Pandemic by the Developmental Disabilities Primary Care Program of Surrey Place, Toronto. The content of this tool was subject to review by Surrey Place clinicians, primary care providers, ethicists and other relevant stakeholders.

All rights reserved. No part of this website may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of the copyright owner, Surrey Place. Contact the Developmental Disabilities Primary Care Program at Surrey Place at ddpcp@surreyplace.ca for permission to adapt information and tools to your local practice setting.

COVID-19 Advance Care Plan

COVID-19 Advance Care Planning

A guide for caregivers of adults with intellectual and developmental disabilities

Introduction

Related Guidelines

Related Tools

Share

Join Us for the DDPCP Forum: Advancing Inclusive Healthcare!