Why should you use this toolkit?
The Family Matters Toolkit is an opportunity to share tools and resources with 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 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. Where available, we have included a modifiable version, that can be
downloaded and further adapted as required.
This toolkit is for caregivers to better support their family members with IDD regarding their health care.
We know that adults with IDD have worse mental and physical health than adults without these
disabilities and that their health problems can lead to the use of many medications, some with very serious
side effects. In addition, research shows that people with IDD visit their doctors more frequently, go to
the emergency department more often and have more hospitalizations than the general population. They also
experience unnecessary long hospital admissions, and even death. Many things can be done to improve the
health of adults with IDD and caregivers play a very important role.
To make changes, individuals and caregivers need information about how to: 1) manage common health issues;
2) talk about health issues and health care; and 3) navigate the health care system. This toolkit has
information and tools that can be helpful.
About the H-CARDD Program
This toolkit is an adaptation of the Nuts and Bolts of Health Care for DSPs Toolkit, developed by the Health Care Access Research and Developmental Disabilities (H-CARDD) team in partnership with Vita Community Living Services. H-CARDD is a research program based in Ontario, Canada, studying the health and health care outcomes of adults with IDD. Vita CLS is a non-profit community organization that provides services for adults with developmental disabilities and dual diagnosis (developmental disability accompanied by a mental health support need). The original toolkit was the product of a two-year effort, informed by speaking with direct support professionals, supervisors, directors, and self-advocates from Vita CLS as well as with health care providers.
About The Project Team
- Lee Steel | Family Support Worker, CAMH
- Irfan Jiwa | Research Analyst, CAMH
- Andrea Perry | Research Consultant
- Mahrukh Nisar | CAMH
- Megan Abou Chacra | Research Analyst, CAMH
- Tiziana Volpe | Research Coordinator, CAMH
- Yona Lunsky | Director, H-CARDD Program
With special thanks to
The Developmental Disabilities Primary Care
Program for collaborating with us on the About My Health and My
Health Care Visit tools.
Vita Community Living Services for collaborating
with us on the toolkit.
Special Olympics Ontario for
funding a student to work on the project
Citing and sharing this Toolkit
Steel, L., Jiwa, I., Nisar, M., Perry, A., Abou Chacra, M., Volpe, T., & Lunsky, Y. (2020) Family Matters Toolkit. Toronto, ON: Health Care Access Research and Developmental Disabilities Program.
Where available, we have included a modifiable version of tools, that can be downloaded and further adapted for your site. We ask that acknowledgment be given to the Health Care Access Research and Developmental Disabilities (H-CARDD) program and Vita Community Living Services.