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

Development Process

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.

 

Acknowledgements

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.

Sincerely,

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
Toronto, ON

Dr. Joseph M. Berg
Medical Genetics and Psychiatry
Toronto, ON

Dr. Elspeth Bradley
Psychiatry
Toronto, ON

Dr. Tom Cheetham
Family Medicine
Toronto, ON

Dr. Cynthia Forster-Gibson
Family Medicine and Genetics
Mississauga, ON

John Heng
Ethics
London, ON

Dr. Brian Hennen
Family Medicine
Halifax, NS

Dr. David Joyce
Family Medicine
Vancouver, BC

Maureen Kelly
Nursing
Toronto, ON

Marika Korossy
Library Science
Toronto, ON

Dr. Yona Lunsky
Psychology
Toronto, ON

Developmental Disabilities Primary Care Initiative

Acknowledgement

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

Laura Arthurs
Quest Society
Rehabilitation
Halifax, NS

Jane Bernal
Developmental Neuropsychiatry
Cornwall Partnership Trust
Truro, Cornwall, UK

J. Carolyn Graff
College of Nursing
University of Memphis
Memphis, TN, USA

Dr. Nick Kates
Psychiatry
McMaster University
Hamilton, ON

Dr. Nicholas Lennox
Director, Queensland Centre for Intellectual and Developmental Disabilities
University of Queensland
Brisbane, Australia

Dr. Andrew Levitas
Psychiatry
School of Osteopathic Medicine
Stratford, NJ, USA

Dr. James Meuser
Family Medicine
University of Toronto
Toronto, ON

Ruth Northway
Learning Disability Nursing
University of Glamorgan
Glyntaff, Wales, UK

Hélène Ouellette-Kuntz
Community Health & Epidemiology
Queen’s University
Kingston, ON

Dr. Walter Rosser
Family Medicine
Queen’s University
Kingston, ON

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

 Informed Consent

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.