Family Matters Toolkit

Tools and resources for family caregivers of adults with intellectual and developmental disabilities


Download Toolkit

This toolkit is for caregivers who are interested in improving the health and health care of a family member with intellectual and developmental disabilities (IDD). The resources included in this toolkit include tools developed by the H-CARDD program as well as curated resources from Surrey Place's Developmental Disabilities Primary Care Program and others. These tools can be used together, or as stand-alone materials, depending on your needs, goals and existing resources. We encourage you to use whichever pieces of this toolkit you feel are helpful.
More About This Toolkit About IDD

The Developmental Disabilities Primary Care Program is a program of Surrey Place that collaborates with primary care providers, such as family doctors, nurses, and health care providers throughout Canada, researchers and knowledge translation professionals to publish guidelines and corresponding clinical practice tools and educational materials to assist primary care providers in their care of patients with intellectual and developmental disabilities. Nuts and Bolts has partnered with the DDPCP to publish two new tools, About My Health and My Health Care Visit. You can find these in the Tools and Tips for Health Care Visits section of this toolkit
Visit Website Read the Guidelines

Tools and Tips for Health Care Visits

This information will help you and your family member prepare and participate in health care visits.

The About My Health tool, developed in collaboration with Surrey Place Developmental Disabilities Primary Care Program, will help your family member to share key information with new health care providers and help appointments run more smoothly.
Download Sample Tips

The My Health Care Visit tool, developed in collaboration with Surrey Place Developmental Disabilities Primary Care Program, will help your family member to be more involved in their health care.
Download Sample Tips

This checklist outlines important things to consider when preparing for emergencies.
Download

Enhancing Communication

Tips and information on fostering excellent communication for the person with IDD and their families, and role modelling it to others including health care providers.

Use this glossary to familiarize yourself with different types of health care providers and what they specialize in.
Download

Learn more about what to consider when finding a family doctor for your family member and how to go about doing so.
Download

Learn more about how you can facilitate communication and self-efficacy in your family member when receiving medical care.
Download

Learn how you can be a health care communication champion for your family member.
Download

A diagnosis of a catastrophic illness can be difficult for everyone involved. This resource gives 5 tips for providing social and emotional support, and provides suggestions about how to work with the health care system and take care of yourself as a caregiver.
Download

Health Care Information

Information and resources on health care conditions that commonly affect people with IDD.

Aging Dementia Medications
Mental Health Pain Assessment Urinary Tract Infections

Seizures

Epilepsy is more common in people with IDD, than people without. Use these tools from the Developmental Disabilities Primary Care Program for preventive planning and monitoring of seizures.

Info Tips for Cargivers Action Plan First Aid Monitoring Chart Baseline Record

Monitoring Charts

The Developmental Disabilities Primary Care Program at Surrey Place developed monitoring charts that you can use to collect data and health information related to various health issues and conditions such as sleep, menstruation, food, and blood sugar.

Browse Monitoring Charts

Health Care Handouts for People with IDD

Information sheets and handouts on common health care conditions and procedures to give out and review with your family member to help them understand and prepare.

Fecal Occult Blood Test Pap Test Mammogram MRI Scan