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More than one in three adults with intellectual and developmental disabilities are high-cost health care patients

November 1, 2018 Toronto

New research by ICES and the Centre for Addiction and Mental Health shows more than one in three adults with intellectual and developmental disabilities (IDD) are high-cost health care patients, defined as those who rank in the top 10 per cent of annual health care spending. In health care systems worldwide, high-cost health care users account for the majority of spending.

The study published today in the Journal of Intellectual Disability Research is one of the first to look at high-cost health care users with IDD.

“We know that adults with intellectual and developmental disabilities use health services to a greater extent than the general population, but our findings show adults with IDD under the age of 65 are significantly overrepresented within the high health care cost population,” says Dr. Yona Lunsky, author of the study, director, CAMH's Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health, director, Health Care Access Research and Developmental Disabilities (H-CARDD) Program and adjunct scientist at ICES.

The study examined the health care costs of 66,484 Ontario adults with IDD age 18 to 64 from 2009 to 2011 and found:

  • 36.0 per cent of adults with IDD had annual health care costs above $2,610 (top 10 per cent category)
  • 21.3 per cent of adults with IDD had annual health care costs above $5,446 (top five per cent category)
  • 7.6 per cent of all adults with IDD had annual health care costs above $22,070 ( top one per cent category)

“Our study shows people in the high-cost groups are different in several ways than people with lower costs. They are more likely to be female, older and with greater morbidity. This is similar to what is seen in people without intellectual and developmental disabilities,” adds Lunsky.

Dr. Walter Wodchis, senior scientist at ICES, who has studied high-cost patients for a number of years, notes that “This group of patients with IDD is far more likely than adults with only physical conditions to have very high costs for their care. But the really high costs are incurred in hospital when we would hope to support them in the community. Because these are life-long disabilities, we really need to ensure proactive care plans are in place to prevent them from ending up in hospital.”

The researchers add that the highest costs for adults with IDD are for psychiatric hospitalizations, and with this in mind there needs to be more understanding of the trajectory toward becoming a high-cost patient. Solutions designed for the general high-cost population, which often focus on older and medically fragile individuals, may not always apply to people with IDD.

“We need to consider which health care providers should be involved, the role of health care navigation, the impact of shared health care plans, empowerment of the patient, and consider the role of families and paid caregivers supporting health care delivery. It is important to have an integrated approach of multiple sectors and mental and physical health,” says Lunsky.

This study was a collaboration between the H-CARDD Program and the Health System Performance Research Network.

“High health care costs among adults with intellectual and developmental disabilities: a population based study,” was published today in Journal of Intellectual Disability Research.

Author block: Yona Lunsky, Claire de Oliveira, Drew Wilton and Walter Wodchis.

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 the latest ICES news, follow us on Twitter: @ICESOntario

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 its field. 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. CAMH is fully affiliated with the University of Toronto, and is a Pan American Health Organization/World Health Organization Collaborating Centre. For more information, please follow @CAMHnews or @CAMHResearch on Twitter.


Deborah Creatura
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CAMH Media Relations
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