Healthcare Quarterly Vol.17 No.3 2014 11 Primary Care of Adults with Developmental Disabilities in Ontario Yona Lunsky, Robert S. Balogh, Virginie Cobigo, Barry Isaacs, Elizabeth Lin and Hélène M.J. Ouellette-Kuntz ICES Report Abstract The health status and healthcare of adults with develop- mental disabilities have not been well-studied in Ontario, due to the absence of population-based data. To address this deficit, the Health Care Access Research and Developmental Disabilities (H-CARDD) program – a provincial partnership of scientists, policymakers and clinicians – has used existing provincial-level administrative data to provide descriptive information on the health of adults with developmental disabilities and the quality of their primary care relative to other adults. H-CARDD’s findings have revealed many gaps in the care of adults with developmental disabilities. While primary care providers are critical to achieving needed changes, the broader healthcare context and infrastructure also need to be considered. The Issue In recent years, there has been an increased emphasis on the role of primary care in treating vulnerable populations who experience disparities in healthcare. Adults with developmental disabilities, such as Down syndrome or autism, are one such group (Ouellette-Kuntz 2005). They are more likely to have mental health problems (Cooper et al. 2007; Morgan et al. 2008) and physical ailments (van Schrojenstein Lantman-De Valk et al. 2000; Jansen et al. 2004) and to need resource- intensive healthcare than other individuals (Polder et al. 2002). However, because of their cognitive and adaptive impairments, they face unique challenges in navigating their way through an already fragmented healthcare system. This is why their primary care is so important. Recognizing this need, the first Canadian primary care guide- lines to focus on adults with developmental disabilities were published by Sullivan et al. (2006, 2011 [update]). Due to the absence of Canadian data, however, these important guidelines were informed primarily by research from other jurisdictions. From a policy perspective, it is difficult to forecast health needs and target health interventions for adults with developmental disabilities without knowing the size of this population and its key health concerns. Such information is not well-captured in community surveys targeting the general population, and at this time, there are no clinical registries specific to developmental disabilities. One way to address this gap is through existing provincial-level administrative data, which requires the linking of information held by the various government sectors (e.g., health, social services and education) that serve the develop- mental disabilities population. The Study The Health Care Access Research and Developmental Disabilities (H-CARDD) Primary Care Project is a provincial partnership of scientists, policymakers and clinicians with three goals: to provide prevalence estimates, demographic informa- tion and a description of the disease profiles of Ontario adults with developmental disabilities; to examine their healthcare use relative to other adult Ontarians; and to assess how consistent their care was with primary care guidelines. The project was completed in two stages. The first stage involved creating and describing a province-wide cohort of adults with developmental disabilities aged 18–64 years. This was accomplished by linking social service-based diagnostic information from the Ontario Disability Support Program with administrative health data held at the Institute for Clinical Evaluative Sciences. The second stage consisted of studying the healthcare of this cohort relative to a random sample of 20% of the Ontario population in the same age range. Aspects of health- care described included the use of primary care, emergency care and hospitalizations, visits to medical specialists and medication use. To evaluate care, a set of healthcare indicators based on care guidelines were used. These included the periodic health exami- nation; breast, cervical and colorectal cancer screening; eye examinations for individuals with diabetes; care for low trauma fractures; follow-up care for mental health-related emergency visits; avoidable hospitalizations; high-risk medication prescrip- tions; and the monitoring of multiple medications by primary care physicians.