The H-CARDD research program, which leverages ICES data, has played a central role in spotlighting the health inequities experienced by adults with intellectual and developmental disabilities in Ontario.
For more than a decade, the Health Care Access Research and Developmental Disabilities (H-CARDD) research program has played a central role in spotlighting the health inequities experienced by adults with intellectual and developmental disabilities (IDD) in Ontario. H-CARDD has been able to leverage high-quality population-based data housed at ICES to identify gaps in care, monitor system performance, and guide improvements. This work is grounded in collaboration: patients, families, service providers, and system planners have consistently been engaged to ensure that the research and data being used is meaningful and actionable. Over time, this approach has helped build a clearer picture of the challenges adults with IDD face across the health system and has highlighted where change is most urgently needed.
One of the most pressing challenges facing Ontario’s healthcare system is the rising number of patients designated as alternate level of care (ALC). An ALC patient is someone who occupies a hospital bed but does not require the intensity of services provided. Adults with IDD remain in hospital longer despite no longer requiring acute care, often because the services they need in the community to support discharge are unavailable or inadequate. Families, clinicians, and advocates have long raised concerns about the barriers these individuals face, ranging from limited availability of specialized residential supports to challenges coordinating care across sectors. Despite these concerns, until recently, there have been very few comprehensive data to fully understand the scope of the issue to guide system-level solutions.
“We learned that having current numbers at both the provincial level and broken down at the regional level is really important to help system and program planners across the province understand how this work is relevant for them,” says Dr. Avra Selick, scientist within the Azrieli Adult Neurodevelopmental Centre at CAMH.
In 2019, H-CARDD released the landmark report Addressing Gaps in the Health Care Services Used by Adults with Developmental Disabilities. Drawing on ICES data, the report demonstrated that adults with IDD were at significantly higher risk for a range of negative health outcomes. They were 6.5 times more likely to be designated ALC. This statistic underscored what families and care providers had been observing for years: the system was not adequately equipped to support adults with IDD as they transitioned out of hospital, and the consequences were profound.
Having concrete numbers is critically important to help decision-makers recognize that adults with IDD are dramatically overrepresented among long-stay inpatients […]
Recognizing the urgency of this issue, informed by ICES data, the H-CARDD team examined in depth the factors contributing to ALC status among adults with IDD in 2022. This work resulted in key guidance documents and a suite of resources designed to support system planners, care providers, and policymakers.
“In order to have an impact, we need to work with the people who are actually trying to make change happen on the ground and understand what numbers they need to address the problem and inform solutions,” says Dr. Yona Lunsky, ICES scientist and Director of the Azrieli Centre at CAMH.
Building off the work of H-CARDD, the Ministry of Health (MOH) engaged H-CARDD and the ICES Mental Health and Addictions Program Framework Research Team to initiate a project that examined long-stay inpatients with IDD to quantify how many adults with IDD were experiencing prolonged hospitalizations, identify the characteristics and risk factors associated with becoming ALC, and understand patient outcomes post-discharge. The initial findings were published in the Canadian Journal of Psychiatry in 2025, marking an important contribution to the evidence base.
The impact of this research extends beyond the academic community. The 2025 Ontario Ombudsman’s report, Lost in Transition, which examines the experiences of adults with IDD who were inappropriately housed in hospitals, cited H-CARDD’s work extensively. The Ombudsman concluded that, “The province’s systemic failure to help people with complex developmental disabilities and high needs has left too many to suffer for unnecessarily long periods in hospital.” This finding reflected the patterns identified in H-CARDD’s analyses.
H-CARDD’s work has provided information that could be used to support regional planning. The team reported region-specific findings, offering detailed insights into how ALC patterns among adults with IDD vary across the province. The regional breakdown has provided key partners, including system planners and care providers, with the data needed to identify local challenges, allocate resources more effectively, and design interventions tailored to the needs of their communities.
The evidence generated has provided the foundation for more responsive, equitable, and coordinated care. The research continues to inform policy discussions, guide planning efforts, and support the development of a system that better meets the needs of adults with IDD and their families.
“Often this population is missed or overlooked,” says Dr. Selick. “Having concrete numbers is critically important to help decision-makers recognize that adults with IDD are dramatically overrepresented among long-stay inpatients and action is needed to address this problem.”
