About Primary Care Guidelines

People with intellectual and developmental disabilities (IDD) have different and often more complex health needs than other patients do. As primary care providers, family physicians play an important role in promoting the health and well-being of these patients. Many of their health conditions are preventable when we adapt health care to their specific needs. It is important that physicians know what specifically to attend to in their patients with IDD, how best to care for them, and how to adapt their practice.

The 2018 Canadian consensus guidelines on primary care for adults with IDD outline standards of care to support clinical decision making. They also point to clinical tools and other practical resources for primary care providers. These guidelines are developed by family physicians, nurses, psychiatrists and other experts who are experienced in the care of people with IDD. They promote a consideration of different types of knowledge that support recommendations, such as empirical and health eco-system studies and also studies regarding patient experiences and clinical expertise.

The guidelines offer advice on preventing symptoms in chronic illnesses, minimizing the stress of life transitions and other life experiences, and reviewing multiple, long-term use of medications. The guidelines emphasize periodic preventive health assessments, health action plans and systematic assessment of behaviours that challenge.

All information in this section is closely based on the publication Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines, in Canadian Family Physician, Volume 64: April 2018, and is subject to copyright.

The guidelines are published by the College of Family Physicians of Canada. Permission for publication of the guidelines on this website was obtained from the publisher. None of this content may be distributed, copied or altered without permission.

Download a copy of the 2018 guidelines

Soins primaires aux adultes ayant des déficiences intellectuelles et développementales
Lignes directrices consensuelles canadiennes de 2018

Previous versions of the guidelines: 2011 guidelines, 2006 guidelines

Guideline update colloquium

In June 2016, the Developmental Disabilities Primary Care Program brought together family physicians and other health care providers with expertise in the care of people with intellectual and developmental disabilities (IDD) to discuss updates to the 2011 Canadian consensus guidelines on the primary care of adults with developmental disabilities. Participants formed topic specific knowledge synthesis groups that suggested changes to the 2011 guidelines. A guideline steering committee led the editorial process and provided oversight to the consensus process.

Guideline steering committee

William F. Sullivan

MD, CCFP(COE), FCFP, PhD, Associate Professor, Department of Family and Community Medicine, University of Toronto; Staff Physician, Medical Services, Surrey Place; Staff Physician, Centre and Family Practice Unit, St. Michael’s Hospital; Director, Developmental Disabilities Primary Care Program, Surrey Place, Toronto

Heidi Diepstra

MA, PhD, Research Associate, Surrey Place, Toronto

John Heng

MA, Assistant Professor, Department of Philosophy and Religious Studies; Department of Interdisciplinary Studies, University of Western Ontario

Shara Ally

RN, MN, Advanced Practice Nurse, Surrey Place, Toronto

Elspeth Bradley

MBBS PhD FRCPC FRCPsych, Associate Professor, Department of Psychiatry, University of Toronto; consulting psychiatrist and psychotherapist in intellectual disabilities

Ian Casson

MD, MSc, FCFP, Associate Professor, Department of Family Medicine, Queen’s University

Brian Hennen

MD, MA, FCFP, FRCGP, Professor Emeritus, Western University; Professor Emeritus, Dalhousie University

Maureen Kelly

BScN, MPA, Nurse

Marika Korossy

BA, Information specialist

Karen McNeil

MD, CCFP, FCFP, Assistant Professor of Medicine, Dalhousie University

Knowledge synthesis groups

Approaches to Care and General Considerations

Lead:

Karen McNeil

MD, CCFP, FCFP, Assistant Professor of Medicine, Dalhousie University

Brian Hennen

MD, MA, FCFP, FRCGP, Professor Emeritus, Western University; Professor Emeritus, Dalhousie University

Authors:

Dara Abells

MD, CCFP, Family Physician, Forest Hill Family Health Centre; ISAND, Toronto

Khush Amaria

PhD, C.Psych, Team Lead Good 2 Go Transition Program; The Hospital for Sick Children, Toronto

Cynthia Forster

MD, PhD, Physician Lead, Genetics Program, Trillium Health Partners; Assistant Professor, University of Toronto

Sarah Shea

MD, FRCPC, Professor, Department of Pediatrics, Dalhousie University

Katherine Stringer

MBChB, CCFP, FCFP, Associate Professor and Chair, Faculty of Medicine, Memorial University of Newfoundland

Witherby Sandra

Family practice nurse, Dalhousie Family Medicine Clinic

Physical health

Lead:

Ian Casson

MD, MSc, FCFP, Associate Professor, Department of Family Medicine, Queen’s University

Authors:

Meg Gemmel

MD, CCFP, Assistant Professor, Department of Family Medicine, Queen’s University

Elizabeth Grier

MD, CCFP, Family Physician, Department of Family Medicine, Queen’s University

Jessica Ladouceur

MD, CCFP, Adjunct Professor, Belleville Family Medicine Centre, Queen’s University

Amanda Lepp

MD, PhD, Resident Physician, Discipline of Family Medicine, McMaster University

Ullanda Niel

MD, CCFP, Family Physician, Scarborough Centre for Healthy Communities

Samantha Sacks

MD CM CCFP, Family Physician and Clinical Faculty Lecturer, Department of Family Medicine, McGill University, Montreal

Kyle Sue

MD MHM CCFP(PC), Clinical Assistant Professor, Family Medicine, Memorial University, St John’s, Newfoundland

Mental Health

Lead:

Elspeth Bradley

MBBS PhD FRCPC FRCPsych, Associate Professor, Department of Psychiatry, University of Toronto; consulting psychiatrist and psychotherapist in intellectual disabilities

Authors:

Kerry Boyd

MD, FRCPC, Associate Clinical Professor, Department of Psychiatry and Behavioural Neurosciences, McMaster University; Chief Clinical Officer, Bethesda Community Services

MacKenzie Ketchell

MS, BCBA

Yona Lunsky

PhD, C. Psych, Clinician Scientist, Centre for Addiction and Mental Health; Professor and Developmental Disability Lead, University of Toronto

Shirley McMillan

BScN, PhD, Clinical Nurse Specialist, Surrey Place, Toronto

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