Clinical lead

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.

Authors

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.