Introduction to Tools for the Primary Care of People with Developmental Disabilities
Developmental disabilities (DD) or intellectual disabilities are terms used synonymously in Canada (learning disabilities is used in the UK and the older term mental retardation in the USA). These terms refer to a range of conditions in which lifelong limitations in intellectual functioning and in conceptual, social, and practical skills (i.e., adaptive functioning) are noticeable before age 18 years. Estimates of the prevalence of people with DD vary between 1%-3% of Canadians, and if one includes those with borderline DD, the prevalence is significantly greater. Most adults with DD reside in and receive health care in the community.
The tools in the original book, Tools for the Primary Care of People with Developmental Disabilities, were developed to assist primary care providers (general practitioners, family physicians, nurses, nurse practitioners) in caring for adults with DD in Canada by helping them to implement various recommendations in Primary care of adults with developmental disabilities: Canadian consensus guidelines (DD Guidelines).1
Participants in a DD Training Course, based on the DD Guidelines (150 participants over four years) identified challenges in implementing the recommendations of the Guidelines and recommended development of specific tools for this purpose. Several clinician-led Tools Working Groups were tasked with developing brief, practical, and evidence-informed tools to respond to these requests. Initially, six Tools Working Groups developed a set of tools that Training Course participants and faculty deemed to be priority issues. Draft versions of each tool were reviewed by two or more nationally and/or internationally acknowledged experts in relevant areas of DD medicine and, based on feedback received, the tools were finalized.
Use of Developmental Disabilities Tools and Ongoing Development
The tools in this book are meant to complement DD Guideline recommendations. Those recommendations are framed by guiding principles that inform the DD Guidelines and related tools (i.e., dignity, inter-personal relationships, and justice considerations relevant to persons with DD). The tools are organized to correspond to the DD Guidelines sections: General Issues, Physical Health Issues, and Behavioral and Mental Health Issues. Not every guideline has a corresponding tool.
Other tools not included in the book were developed primarily for and by others who work with primary care providers. For example, the Caregiver Health Assessment was developed for and by caregivers who typically work in group homes. Such tools are meant to facilitate collaboration with primary care providers. These latter tools are available at Surrey Place Centre.
We would like to acknowledge the sponsors of the DD Primary Care Initiative: Ontario Ministry of Community and Social Services, Ontario Ministry of Health and Long-Term Care, Surrey Place Centre, and Surrey Place Centre Charitable Foundation. Their shared financial support of this initiative since 2005 has made the development and printing of these tools possible.
A special thank you to those listed below who have contributed so much to the development and review of these tools. Thank you also to parents of adults with DD, caregivers and in particular to persons with DD who have contributed generously in various ways to this project.
On behalf of all those who have contributed to this project, we hope that these tools will help, in some way, to improve the health and well-being of adults with DD, so that they may more fully take part in all aspects of life.
William F. Sullivan, Maureen Kelly, Marika Korossy, and John Heng, Co-editors
1 Sullivan WF, Berg JM, Bradley E, Cheetham T, Denton R, Heng J, Hennen B, Joyce D, Kelly M, Korossy M, Lunsky Y,
McMillan S. Primary care of adults with developmental disabilities: Canadian consensus guidelines. Can Fam Physician 2011;57:541-53.
Team Saw a Need for Tools
This initiative has brought together family physicians and other health care professionals who practice in a variety of clinical settings, with expertise in the care of adults with developmental disabilities (DD). Their names, areas of expertise, and place of practice are listed below.
Dr. William F. Sullivan (Chair)
Family Medicine and Ethics
Dr. Joseph M. Berg
Medical Genetics and Psychiatry
Dr. Elspeth Bradley
Dr. Tom Cheetham
Dr. Cynthia Forster-Gibson
Family Medicine and Genetics
Dr. Brian Hennen
Dr. David Joyce
Dr. Yona Lunsky
Developmental Disabilities Primary Care Initiative
The Developmental Disabilities Primary Care Initiative and Surrey Place Centre acknowledge the contribution of Medication Use Management Services (MUMS) in the development of the Tools for the Primary Care of People with Developmental Disabilities. We acknowledge that the overall design layout (e.g., colour, table formats, cover and other signature expressions) was developed by MUMS and is being used with their permission for the publication.
While great effort has been taken to assure the accuracy of the information, Surrey Place Centre, the Developmental Disabilities Primary Care Initiative, the reviewers, publisher, printer and others contributing to the preparation of this document cannot accept liability for errors, omissions or any consequences arising from the use of the information. Since this document is not intended to replace other information, physicians are urged to consult available drug information literature before prescribing.
Citation: Developmental Disabilities Primary Care Initiative. Tools for the Primary Care of People with Developmental Disabilities. 1st ed. Toronto: MUMS Guideline Clearinghouse; 2011.
Scientific and Editorial Staff
William F. Sullivan, MD, PhD
Maureen Kelly, BScN, MPA
Laurie Dunn, MSc, BScPhm
Marika Korossy, BA
John Heng, MA
John Pilla, MSc, BScPhm
David Joyce, MD
Jo-Anne Jackson, BA, copy editor
Expert Review Committee of Core Primary Care Tools
Cornwall Partnership Trust
Truro, Cornwall, UK
J. Carolyn Graff
College of Nursing
University of Memphis
Memphis, TN, USA
Dr. Nick Kates
Dr. Nicholas Lennox
Director, Queensland Centre for Intellectual and Developmental Disabilities
University of Queensland
Dr. Andrew Levitas
School of Osteopathic Medicine
Stratford, NJ, USA
Dr. James Meuser
University of Toronto
Learning Disability Nursing
University of Glamorgan
Glyntaff, Wales, UK
Community Health & Epidemiology
Dr. Walter Rosser
Working Groups and Contributors for Primary Care Tools
General Issues in Primary Care
Team Leader: William F. Sullivan, Family Medicine, Toronto, ON
Team Members: Tom Cheetham, Elizabeth Grier, Cynthia Forster-Gibson, Stephannie MacDonell, Maureen Kelly, Valerie Temple
Team Leader: Greg Gillis, Family Medicine, London, ON
Team Members: Maria Gitta, Renata Leong, John Heng, William F. Sullivan, Marika Korossy, Hugo Scher
Cumulative Patient Profile and Medication Record
Team Leader: Tom Cheetham, Family Medicine, Toronto, ON
Team Members: Deborah Champ, Brian Hennen, Bruce McCreary, David Joyce, William F. Sullivan, Stephannie MacDonell, Elizabeth Grier
Preventive Care Checklist
Team Leader: Brian Hennen, Family Medicine, Halifax, NS
Team Members: Terry O’Driscoll, Cynthia Forster-Gibson, Joseph M. Berg, David Joyce, Wendell Block, William F. Sullivan
Checklists / Syndrome-Specific Charts
Team Leader: William F. Sullivan, Family Medicine, Toronto, ON
Team Members: Joseph M. Berg, Maureen Kelly, Donna Cameron, Alin Khodaverdian, Cynthia Forster-Gibson, Marika Korossy
Behavioral and Mental Health Tools
Team Leader Elspeth Bradley, Psychiatry, Toronto, ON
Team Members: Tom Cheetham, Yona Lunsky, Caroll Drummond, Stephannie MacDonell, Nancy Huntley, Shirley McMillan, Maureen Kelly, William F. Sullivan, Louise Kerr, Margaretha Vanderwelden, Marika Korossy
In addition to those listed above, thank you to the participants in the DD Training Courses and DD Colloquia, and all members of the DD PCI Planning Committee and Faculty, whose valuable suggestions have been essential in the development and improvement of these tools.