This tool provides practical steps to help healthcare providers meet their obligation to respect the decision-making rights of people with intellectual and developmental disabilities. This information is not intended as legal advice. Always consider provincial laws and regulations when using this tool.
Download: Decision Making in Health Care Leave us your feedback
The tool Communicate CARE developed by the Developmental Disabilities Primary Care Program of Surrey Place (2019), is a tip-sheet that offers guidance to family physicians, nurses, and allied health professionals for a person-centred health assessment of adults with intellectual and developmental disabilities.
The tool Adaptive functioning and communication developed by the Developmental Disabilities Primary Care Program of Surrey Place (2019), is an info sheet that explains the different levels of intellectual functioning within intellectual disability: mild, moderate, severe, and profound. Psychological assessments typically refer to these levels.
This tool facilitates the implementation of the clinical practice guideline Capacity for Decision-Making, published in: Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines, Canadian Family Physician, Volume 64(4), April 2018.
Learn how to use the information in this tool in your practice, from selected articles in the Canadian Family Physician special issues on Primary care of adults with intellectual and developmental disabilities:
Supporting adults with intellectual and developmental disabilities to participate in health care decision making Can Fam Physician, Vol 64 (suppl 2): S1-78, April 2018
Praxis: Promoting health care decision-making capabilities of adults with intellectual and developmental disabilities. Can Fam Physician, Vol 65(Suppl. 1):S27-9.
Dr. William Sullivan (CCFP (COE), FCFP, PhD) is an Associate Professor in the Department of Family and Community Medicine, University of Toronto. He has a certificate of added competency in Care of the Elderly from the College of Family Physicians of Canada, in which he is also a Fellow. He is the founding director of the Developmental Disabilities Primary Care Program. Dr. Sullivan works as a family physician in Medical Services at Surrey Place (Toronto). In this capacity, he provides primary care assessments of adults with intellectual and developmental disabilities and consults to their family physicians and other healthcare and developmental services providers. He also has a teaching practice in the Academic Family Health Team at St. Michael’s Hospital, Toronto.
Michael Bach, PhD, Managing Director Institutes for Research and Development on Inclusion and Society
John Heng, MA, Assistant Professor, Department of Philosophy and Department of Interdisciplinary studies, King’s University College, London, Ontario
Megan Henze, OT Reg.(Ont.) Transitions Facilitator, Surrey Place, Toronto, Ontario
Lana Kerzner, LLB Barrister and Solicitor, Toronto Lecturer in Disability and Law, School of Disability Studies, Ryerson University, Toronto, ON
Karen McNeil, MD CCFP FCFP, family physician and Assistant Professor, Department of Family Medicine, Dalhousie University, Halifax, Nova Scotia
Andrea Perry, OT Reg.(Ont.) Transitions Facilitator, Surrey Place, Toronto, Ontario
Janet Vogt, PhD, Manager and Senior Research Associate, Surrey Place, Toronto, Ontario
Adults with IDD are vulnerable to being excluded altogether from decision making regarding their health care. Many such adults can make decisions independently or can do so if they are accommodated and supported by caregivers and other persons whom they trust.
The goal of this guide is to orient health care providers to 3 different decision—making processes. The emphasis is on accommodations and the role of supported decision makers in interpreting the patient’s goal and preferences for the decision at hand. In 2011, the orientation of the tool was to determine whether a person was capable or incapable based on an assessment of an individual’s abilities to understand and appreciate.
The authors represent primary care providers, ethicists, policy experts, and researchers who were familiar with decision making of persons with IDD. They reviewed the Applebaum Criteria for assessing mental capacity and legislation in other jurisdictions that recognize supported-decision making models. They also looked at the UN Convention on the Rights of Persons with Disabilities, which provides the ethical and legal basis for supported decision making and reviewed publications on this topic.
The authors met several times to clarify the concept of supported decision making and to discuss how to incorporate this concept into a point-of-care assessment guide. They consulted mental health professionals and legal experts. The current guide is the result of consensus among the authors based on these discussions and consultations.
This is an update to a previous version of this tool, published as Informed Consent in Adults with Developmental Disabilities. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto: MUMS Guideline Clearing House; 2011, p.11-17.
The tool Communicate CARE developed by the Developmental Disabilities Primary Care Program of Surrey Place (2019), is a tip-sheet that offers guidance to family physicians, nurses, and allied health professionals for a person-centred health assessment of adults with intellectual and developmental disabilities.
The tool Adaptive functioning and communication developed by the Developmental Disabilities Primary Care Program of Surrey Place (2019), is an info sheet that explains the different levels of intellectual functioning within intellectual disability: mild, moderate, severe, and profound. Psychological assessments typically refer to these levels.
This tool facilitates the implementation of the clinical practice guideline Capacity for Decision-Making, published in: Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines, Canadian Family Physician, Volume 64(4), April 2018.
Learn how to use the information in this tool in your practice, from selected articles in the Canadian Family Physician special issues on Primary care of adults with intellectual and developmental disabilities:
Supporting adults with intellectual and developmental disabilities to participate in health care decision making Can Fam Physician, Vol 64 (suppl 2): S1-78, April 2018
Praxis: Promoting health care decision-making capabilities of adults with intellectual and developmental disabilities. Can Fam Physician, Vol 65(Suppl. 1):S27-9.
Dr. William Sullivan (CCFP (COE), FCFP, PhD) is an Associate Professor in the Department of Family and Community Medicine, University of Toronto. He has a certificate of added competency in Care of the Elderly from the College of Family Physicians of Canada, in which he is also a Fellow. He is the founding director of the Developmental Disabilities Primary Care Program. Dr. Sullivan works as a family physician in Medical Services at Surrey Place (Toronto). In this capacity, he provides primary care assessments of adults with intellectual and developmental disabilities and consults to their family physicians and other healthcare and developmental services providers. He also has a teaching practice in the Academic Family Health Team at St. Michael’s Hospital, Toronto.
Michael Bach, PhD, Managing Director Institutes for Research and Development on Inclusion and Society
John Heng, MA, Assistant Professor, Department of Philosophy and Department of Interdisciplinary studies, King’s University College, London, Ontario
Megan Henze, OT Reg.(Ont.) Transitions Facilitator, Surrey Place, Toronto, Ontario
Lana Kerzner, LLB Barrister and Solicitor, Toronto Lecturer in Disability and Law, School of Disability Studies, Ryerson University, Toronto, ON
Karen McNeil, MD CCFP FCFP, family physician and Assistant Professor, Department of Family Medicine, Dalhousie University, Halifax, Nova Scotia
Andrea Perry, OT Reg.(Ont.) Transitions Facilitator, Surrey Place, Toronto, Ontario
Janet Vogt, PhD, Manager and Senior Research Associate, Surrey Place, Toronto, Ontario
Adults with IDD are vulnerable to being excluded altogether from decision making regarding their health care. Many such adults can make decisions independently or can do so if they are accommodated and supported by caregivers and other persons whom they trust.
The goal of this guide is to orient health care providers to 3 different decision—making processes. The emphasis is on accommodations and the role of supported decision makers in interpreting the patient’s goal and preferences for the decision at hand. In 2011, the orientation of the tool was to determine whether a person was capable or incapable based on an assessment of an individual’s abilities to understand and appreciate.
The authors represent primary care providers, ethicists, policy experts, and researchers who were familiar with decision making of persons with IDD. They reviewed the Applebaum Criteria for assessing mental capacity and legislation in other jurisdictions that recognize supported-decision making models. They also looked at the UN Convention on the Rights of Persons with Disabilities, which provides the ethical and legal basis for supported decision making and reviewed publications on this topic.
The authors met several times to clarify the concept of supported decision making and to discuss how to incorporate this concept into a point-of-care assessment guide. They consulted mental health professionals and legal experts. The current guide is the result of consensus among the authors based on these discussions and consultations.
This is an update to a previous version of this tool, published as Informed Consent in Adults with Developmental Disabilities. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto: MUMS Guideline Clearing House; 2011, p.11-17.