Tools for Patients with Intellectual and Developmental Disabilities

Breaking down communication barriers for adults with intellectual and developmental disabilities

Both patients with intellectual disabilities and physicians indicate that some of the main barriers to good care are communication challenges and the lack of time during a health care visit. These issues have become even more of a challenge during the COVID pandemic, when primary care moved from in-person to virtual care.

To address these issues, experts in health care for people with intellectual disabilities at Surrey Place and the Centre for Addiction and Mental Health, Toronto, teamed up with self-advocate groups, families, and support workers to develop tools that empower patients to share health information with their physician in advance of a doctor’s visit and help them feel more at ease.

Having my patients and their caregivers complete the “About my Health” form with my assistance has been an excellent way to summarize their health issues in a clear and easy-to-find way. I encourage my patients to bring this completed form to any healthcare visit (especially the emergency room or a new specialist’s office) so that the treating providers can better understand their history and unique needs.

Dr. Dara Abells

Family physician at Forest Hill Family Health Centre and Surrey Place, Toronto, with expertise in the care for patients with intellectual disabilities

Using the Tools:

About My Health

This is a form where you can write down important information about yourself before you visit a doctor or hospital. You can write about your own health. You can also write down information such as things you like to do; ways to help you understand things better; names of people that support you; things that help you to feel safe and relaxed; and things that you don’t like. Bring this information to the doctor’s office or anytime you are seeing a new health care provider to help a visit go well.

Before My Health Care Visit

This is for you to write out the reasons why you are seeing the doctor and to help prepare for your medical appointment. You should fill this out before you go. Bring this to every health care visit, even if you already know the doctor.

During My Health Care Visit

This section is for you, the doctor and anyone else who is supporting you to fill out during the visit, to help remember what was done, and what you have to do after you leave.

After My Health Care Visit

This section can be completed when you are back home. It is a chance for you and people who support you to discuss the appointment, and review what you liked, and what might make it better next time.

My Health Care Visit (Entire Form)

This version of the My Health Care Visit form contains all three parts in one place. This is to help you prepare for your medical appointment, and to help understand and remember what happened. Bring this to every health care visit, even if you already know the doctor.

If I am going to see a new doctor, I may get nervous about what I need to say. A lot of times my words don’t come out too clearly. So I stumble over my words. Having the tools really helps out a lot because you just hand it to them, they go over it, and if they have any questions that they can ask you and you’ll feel less nervous. I know I feel less nervous because I don’t have to tell my whole story because it’s written there.

Erica Streisslberger

Self-advocate/Patient

About the Tools

These tools were developed as part of Cognisant Causes, a charitable program run by CognisantMD that provides resources – in the form of project-based technology and marketing support – to non-profit healthcare organizations at no cost.

To ensure patient health information is kept secure, data is encrypted both in transmission and in temporary storage. No personally-identifiable information is included on the form. The Platform is fully PHIPA-compliant, and all data remains in Canada.

Special thanks to Dr. Yona Lunsky, Dr. Heidi Diepstra, Irfan Jiwa, Surrey Place, and the Centre for Addiction and Mental Health for their work in leading this project.

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