What is it about?
Individuals with developmental disabilities are a vulnerable population. Research shows that they have higher rates of preventable diseases. They also face greater challenges getting primary care, and higher health care costs.
And yet, when it comes to health care, adults with developmental disabilities have not been well studied in Ontario. This is because there is a lack of data about this population. However, the H-CARDD program is working to change all of that. Download the full Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario, or the Summary in English or in French.
What did the researchers do?
Led by Dr. Yona Lunsky, the H-CARDD program developed a key resource to address the lack of data. The Atlas on the Primary Care of Adults with Developmental Disabilities describes for the first time, the health and health care of individuals with developmental disabilities in Ontario, Canada. It also examines the quality and consistency of their primary care, compared to those without developmental disabilities.
In the video below, Dr. Yona Lunsky explains to a group of adults with developmental disabilities and their families how healthy adults with developmental disabilities are in Ontario, and what kind of health care they get.
What did the researchers find?
Prevalence, demographic and disease profiles
The number of adults (aged 18-64) with developmental disabilities in Ontario was 66,484 in 2009-2010, or 7.8 out of 1000 people. This prevalence estimate is somewhat higher than expected, based on previous reports.
These adults tended to be younger and a greater proportion were male than adults without developmental disabilities. They were more likely to live in poorer neighbourhoods and in rural areas than other adults. They had higher rates of morbidity and were likely to be diagnosed with a range of chronic diseases.
Health service use and prevention
Adults with developmental disabilities were just as likely as those without developmental disabilities to see a family physician but they were less likely to have common prevention checks, like screening for cancer.
When they were ill, how their health problems were managed varied. Some of their care, like getting eye exams for diabetes, was better than it was for adults without developmental disabilities. Yet other types of care were worse, such as follow-up after breaking a bone. Generally, they were more likely to get hospitalized for health issues that should be able to be managed in the community.
Adults with developmental disabilities were taking many medications, with the most commonly prescribed medications being ones for mental health or behaviour problems. Some medication combinations were quite dangerous. One third of adults on multiple medications did not get appropriate follow up care from their family physician.
How can you use this research?
Primary care providers need to take a balanced, comprehensive approach with their patients with developmental disabilities, focusing on prevention and management of disease. There needs to be coordination and continuity between different health providers and between the hospital and community. Finally, patients and caregivers should be viewed as partners in care. They are not passive recipients; they need to be empowered, educated, and supported.
Read an interview with Monica Neitzert, policy manager at the Ontario Ministry of Community and Social Services, about the use of health administrative data to investigate the number of adults with developmental disabilities in Ontario.
"Given that the proportion of individuals with a dual diagnosis appears significantly higher than has been reported elsewhere in the literature speaks to the need to be planning services to meet the specialized needs of this group." - M. Neitzert, policy manager.
Read an interview with Dr. Liisa Jaakkimainen, family physician and health services researcher, about cancer screening in women with developmental disabilities.
"As a family doctor, the research makes me more aware of the importance of presenting the available screening options to women with developmental disabilities and of preventative health care for this population in general." - Dr. L. Jaakkimainen, family physician.
Ask the researchers
If you have a question about the information presented on this page or about information in the Atlas on the Primary Care of Adults with Developmental Disabilities, please send an email to firstname.lastname@example.org.