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Study finds adults with developmental disabilities at risk for dying prematurely at a rate nearly four times higher than those without developmental disabilities


Adults with developmental disabilities in Ontario are nearly four times more likely to die before the age of 75 compared to adults without developmental disabilities, according to a new report by researchers at ICES, Centre for Addiction and Mental Health (CAMH), and University of Ontario Institute of Technology (UOIT). In fact, adults with developmental disabilities continue to consistently have poorer health outcomes across the board when compared to other adults.

The report entitled “Addressing Gaps in the Healthcare Services Used by Adults with Developmental Disabilities in Ontario” found that during the six-year study period (2010 to 2016), 6.1 per cent of adults with developmental disabilities compared to 1.6 per cent of adults without developmental disabilities died prematurely.

“This report highlights that the healthcare needs of people with developmental disabilities are just not being met. We need an integrated healthcare approach that can bridge silos of care, between hospital and community, and between different sectors. To patients and families, these numbers are scary and heartbreaking,” says Yona Lunsky, co-author of the study, director of the Healthcare Access Research and Developmental Disabilities (H-CARDD) research program at CAMH, director of CAMH’s Azrieli Adult Neurodevelopmental Centre and adjunct scientist at ICES.

The researchers looked at the health records for nearly 65,000 Ontarians under the age of 65 with developmental disabilities including Down syndrome and autism.

“We found adults with developmental disabilities did worse across all five outcomes. This pattern was true regardless of age, sex, the wealth or poverty of the neighbourhood where they lived, or the kind of developmental disability they had,” says lead author Elizabeth Lin, CAMH scientist and adjunct scientist at ICES.

Other key findings for adults with developmental disabilities during the six-year study include:

  • Nearly two times more likely to have at least one return visit to an emergency department within 30 days of an earlier visit or hospitalization (34.5 per cent vs. 19.6 per cent).
  • More than three times more likely to be readmitted to hospital within 30 days of their initial discharge (7.4 per cent vs. 2.3 per cent).
  • Six and a half times more likely to have at least one alternate level of care day (the need to remain in hospital despite being well enough for discharge) in hospital (4.6 per cent vs. 0.7 per cent).
  • 17 and a half times more likely to spend at least one day in long-term care (3.5 per cent vs. 0.2 per cent).
  • Nearly four times more likely to experience premature mortality (6.1 per cent vs. 1.6 per cent).

The researchers say the findings reinforce other research demonstrating that these adults are a complex and highly vulnerable population and support the recommendation they require multifaceted solutions to address a range of healthcare outcomes. In addition, a plan is needed that includes people with disabilities at its centre, which considers their needs inside and outside of healthcare, and transitions across different parts of the healthcare system.

Author block: Elizabeth Lin, Robert S. Balogh, Anna Durbin, Laura Holder, Nancy Gupta, Tiziana Volpe, Barry J. Isaacs, Jonathan A. Weiss and Yona Lunsky.

The report is available at ices.on.ca

ICES is an independent, non-profit research institute that uses population-based health information to produce knowledge on a broad range of healthcare issues. Our unbiased evidence provides measures of health system performance, a clearer understanding of the shifting healthcare 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. In October 2018, the institute formerly known as the Institute for Clinical Evaluative Sciences formally adopted the initialism ICES as its official name. For the latest ICES news, follow us on Twitter: @ICESOntario


Deborah Creatura
Media Advisor, ICES
[email protected]
(o) 416-480-4780 or (c) 647-406-5996


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