Researchers call for health care changes to help adults with developmental disabilities

Posted on Tuesday, November 12, 2013

Ontario adults with developmental disabilities such as autism and Down syndrome are having a harder time accessing health care, even though they have more health issues than other people, according to research done at the Institute for Clinical Evaluative Sciences (ICES) and the Centre for Addiction and Mental Health (CAMH).

“Persons with developmental disabilities and their families have long commented on the challenges they face when they seek responsive care for their complex health needs, and now we have strong evidence to support this. Similar to what has been reported in Europe, Australia and the U.S., Ontarians with developmental disabilities face major health inequities,” says Virginie Cobigo, assistant professor in the School of Psychology at the University of Ottawa and co-author of the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario.

The atlas, the largest study of its kind, found there are over 66,000 adults with developmental disabilities under age 65 in Ontario. Adults with developmental disabilities live in poorer neighbourhoods and have higher rates of physical and mental health problems than other Ontario adults. They receive multiple medications for these health issues, and these medications are not always well monitored. While adults with developmental disabilities are as likely to see their family physician as other adults, they are more likely to visit emergency departments and to be hospitalized.

“These individuals don't get the same level of preventive care, such as cancer screening, and not all of their chronic health issues are managed as well as they should be. In general, their care is not consistent with what health care guidelines recommend for adults with developmental disabilities,” says Yona Lunsky, a clinician scientist at CAMH, an adjunct scientist at ICES and director of the Health Care Access Research and Developmental Disabilities (H-CARDD) research program.

“I'm the only person who goes with my son to the doctor and the specialists. People have a lot of trouble understanding him when he speaks, so I act as an interpreter. I'm very lucky because his family doctor has a lot of experience with people living with an intellectual disability. But I'm not always going to be there and I've also got to take care of my own health.” Suzanne Gauthier, mother of Stéphane Boulanger, a 36 year old man living with an intellectual disability.

Researchers are recommending strategies to enhance the overall health and wellbeing of individuals with developmental disabilities. They include:

  • enabling primary care providers to more easily offer guideline-recommended care
  • addressing the broader health system issues and pathways to care
  • making people with developmental disabilities, their families and paid staff active partners in care, giving them the tools they need

The H-CARDD program has two projects underway to improve health outcomes for adults with developmental disabilities: a primary care project with family health teams and an emergency care project.

University of Ottawa

The University of Ottawa is committed to research excellence and encourages an interdisciplinary approach to knowledge creation, which attracts the best academic talent from across Canada and around the world. The University is an important stakeholder in the National Capital Region's economic development.

Institute for Clinical Evaluative Sciences

ICES is an independent, non-profit organization that uses population-based health information to produce knowledge on a broad range of health care issues. Our unbiased evidence provides measures of health system performance, a clearer understanding of the shifting health care needs of Ontarians and a stimulus for discussion of practical solutions to optimize scarce resources. ICES knowledge is highly regarded in Canada and abroad, and is widely used by government, hospitals, planners and practitioners to make decisions about care delivery and to develop policy. For more information, please visit the ICES website.

Centre for Addiction and Mental Health

The Centre for Addiction and Mental Health (CAMH) is Canada's largest mental health and addiction teaching hospital, as well as one of the world's leading research centres in the area of addiction and mental health. CAMH combines clinical care, research, education, policy development and health promotion to help transform the lives of people affected by mental health and addiction issues. Fully affiliated with the University of Toronto, CAMH is a Pan American Health Organization / World Health Organization Collaborating Centre. For more information, please visit the CAMH website.


Néomie Duval
International Media Relations Officer
University of Ottawa
Office: 613-562-5800 ext. 2981
Cell: 613-863-7221

Deborah Creatura
Communications, ICES
Office: 416-480-4780
Cell: 416-904-4547

Michael Torres
Senior Media Relations Specialist, CAMH
Office: 416-595-6015

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