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Investigating barriers to health care for people with developmental disabilities

The Story and Impact

The H-CARDD study population is the largest of its kind internationally.People with developmental disabilities are a highly vulnerable, difficult-to-reach population. They frequently face more health problems and have more difficulties accessing health care than other adults. They have also been challenging to identify for research purposes. ICES is a partner agency in the Health Care Access Research and Developmental Disabilities (H-CARDD) program, which was created to research and address disparities in health status and health care access faced by individuals with developmental disabilities in Ontario.

ICES partnered with the H-CARDD group to produce the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario (2013), a foundation for much of the H-CARDD work.


  • The relationship between ICES and H-CARDD has led to the integration of research findings into emerging frameworks and policy directions, as well as informing future performance measurement.
  • Several resources have been developed, including toolkits, clinical supports and videos, to improve primary and emergency care. These resources have been evaluated and are being shared across the province.
  • Several peer-reviewed papers have been published about the health needs of people with developmental disabilities on topics such as diabetes, preventive care, emergency care, frailty and pregnancy.
  • In February 2016, a meeting to discuss recent findings was held with 100 attendees from five ministries, the LHINs and Health Quality Ontario.

The Scientist


  • H-CARDD research collaborators
  • Ministry of Health and Long-Term Care
  • Ministry of Community and Social Services
  • Autism Ontario
  • Community Living Ontario
  • Evidence Exchange Network for Mental Health and Addictions

Published in the 2015-16 ICES Annual Report

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