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About My Health

About My Health

Learning about the healthcare and communication needs of adults with intellectual and developmental disabilities

Introduction

This is a worksheet for people with intellectual and developmental disabilities to fill out and share with health care providers to make the health care visit a success. It asks about likes and dislikes, communication strategies and other helpful pointers. We recommend people with intellectual and developmental disabilities and caregivers update this any time there is a significant change, or when meeting a new healthcare provider for example at the Emergency Department or at a visit to a specialist.

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  • How to use About My Health at a healthcare visit

    In the video Getting a blood test? you see how Francie brings the About My Health form when going to get her blood test done. Information in the About My Health form helps the nurse understand how to make the test easier for Francie. Video developed by Health Care Assess Research and Developmental Disabilities, CAMH, Toronto, 2016 [4:34 minutes].

  • Clinical practice guidelines

    Asking for patient information is one of the initial steps in the Health Assessments, a key recommendation for preventive care in the Primary care for adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines, Canadian Family Physician, Vol 64: 245-279, April 2018.

Clinical lead

headshot of yona lunsky

Dr. Yona Lunsky is Director of the Azrieli Adult Neurodevelopmental Centre, and Senior Scientist at the Centre for Addiction and Mental Health. She directs the Health Care Access and Developmental Disabilities Program (H-CARDD) which brings research, policy and practice together to improve the health of adults with developmental disabilities. She is a Professor in the Department of Psychiatry at the University of Toronto and Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES), Toronto.

Dr. Lunsky’s research explores clinical and systems issues related to health services. She is involved in a number of projects focused on improving primary, emergency and mental health care and is particularly interested in working together with health care providers and recipients to design tools to improve health care delivery.

Authors

Mais Malhas, DSW, M.ADS., Centre for Addiction and Mental Health
Heather Hermans, Behaviour Therapist, Vita Community Living Services
Erin Orr, M.A., Centre for Addiction and Mental Health & Ryerson University
Chanelle Salonia, M.A., BCBA, Associate Director of Clinical and Educational Services, Vita Community Living Services
Lauren Zaretsky, B.A., Centre for Addiction and Mental Health

About My Health was developed through the Nuts and Bolts project, a partnership with the Centre for Addiction and Mental Health and Vita Community Living Services – MensSana, Toronto. It was created through the generous input and testing of two consumer self-advocate groups, with families, and with staff. It is also being pilot tested with a developmental service agency in Toronto (2019).

This is an update to a previous version of this tool, published as Today’s Visit. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto: MUMS Guideline Clearing House; 2011, p.24. Key adaptations include being written from the perspective of the patient, and using language that is simplified, with input and feedback from patients, staff and family caregivers.

  • Supporting materials
    • How to use About My Health at a healthcare visit

      In the video Getting a blood test? you see how Francie brings the About My Health form when going to get her blood test done. Information in the About My Health form helps the nurse understand how to make the test easier for Francie. Video developed by Health Care Assess Research and Developmental Disabilities, CAMH, Toronto, 2016 [4:34 minutes].

    • Clinical practice guidelines

      Asking for patient information is one of the initial steps in the Health Assessments, a key recommendation for preventive care in the Primary care for adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines, Canadian Family Physician, Vol 64: 245-279, April 2018.

  • Meet the team

    Clinical lead

    headshot of yona lunsky

    Dr. Yona Lunsky is Director of the Azrieli Adult Neurodevelopmental Centre, and Senior Scientist at the Centre for Addiction and Mental Health. She directs the Health Care Access and Developmental Disabilities Program (H-CARDD) which brings research, policy and practice together to improve the health of adults with developmental disabilities. She is a Professor in the Department of Psychiatry at the University of Toronto and Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES), Toronto.

    Dr. Lunsky’s research explores clinical and systems issues related to health services. She is involved in a number of projects focused on improving primary, emergency and mental health care and is particularly interested in working together with health care providers and recipients to design tools to improve health care delivery.

    Authors

    Mais Malhas, DSW, M.ADS., Centre for Addiction and Mental Health
    Heather Hermans, Behaviour Therapist, Vita Community Living Services
    Erin Orr, M.A., Centre for Addiction and Mental Health & Ryerson University
    Chanelle Salonia, M.A., BCBA, Associate Director of Clinical and Educational Services, Vita Community Living Services
    Lauren Zaretsky, B.A., Centre for Addiction and Mental Health

  • About the tool development

    About My Health was developed through the Nuts and Bolts project, a partnership with the Centre for Addiction and Mental Health and Vita Community Living Services – MensSana, Toronto. It was created through the generous input and testing of two consumer self-advocate groups, with families, and with staff. It is also being pilot tested with a developmental service agency in Toronto (2019).

  • Version history

    This is an update to a previous version of this tool, published as Today’s Visit. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto: MUMS Guideline Clearing House; 2011, p.24. Key adaptations include being written from the perspective of the patient, and using language that is simplified, with input and feedback from patients, staff and family caregivers.