Multiple measures of health and wellbeing of people with intellectual disability (ID) and the general Victorian population were compared using representative population level data. The sample consisted of adults with ID (N = 897) and the general Victorian population (N = 34,168) living in the state of Victoria in Australia. Proxy respondents were interviewed on behalf of people with ID, while respondents from the general Victorian population were interviewed directly. The data were weighted to reflect the age/sex/geographic distribution of the population. Results revealed that adults with ID reported higher prevalence of poor social determinants of health, behavioural risk factors, depression, diabetes, poor or fair health. A higher proportion of people with ID reported blood pressure and blood glucose checks, while a lower proportion reported cervical and breast cancer screening, compared with the general Victorian population. The survey identified areas where targeted approaches may be undertaken to improve the health outcomes of people with ID and provide an important understanding of the health and wellbeing of these Victorians.
Numerous research studies have documented high rates of mortality and morbidity among both children and adults with intellectual disability (ID) (Cooper, Melville, & Morrison, 2004Emerson and Hatton, 2013, Haveman et al., 2010, Krahn and Fox, 2013, Krahn et al., 2006, Oeseburg et al., 2011, O’Hara et al., 2010, Ouellette-Kuntz, 2005, US Department of Health and Human Services, 2002b and Van Schrojenstein Lantman-de Valk, 2005). While the results of such studies are relatively consistent over time and jurisdictions, this evidence base may be criticised on two important counts (Emerson and Hatton, 2013 and Krahn and Fox, 2013). First, the majority of studies are based on small scale convenience samples. Second, relatively few studies have collected comparable data from appropriate non-ID samples.
Current knowledge suggests that the causes of the inequality in health status between people with and without ID are varied and complex, including: specific secondary health conditions associated with syndromic causes of ID (e.g., congenital heart defects in infants with Down syndrome); poor health literacy; increased risk of exposure of people with ID to key social determinants of poorer health (e.g., childhood poverty); and barriers to accessing health promotion, primary, secondary and tertiary health care (Emerson and Hatton, 2013 and Krahn and Fox, 2013).
It is clear that many of these causes are avoidable and unjust. As such they represent health inequities or inequalities (Whitehead, 1992). For example, a recent confidential inquiry that examined all deaths of people with ID in five selected areas of England over a two year period concluded that 42 per cent were premature in that the provision of appropriate health care would have been likely to have delayed the person's death by at least 12 months (Heslop et al., 2013). As a result of this accumulation of knowledge, United Nations agencies and several national governments are prioritising actions to reduce the health inequalities experienced by people with ID (Department of Health, 2009, US Department of Health and Human Services, 2002a and World Health Organization and the World Bank, 2011).
A key barrier to progress in this area is the invisibility of people with ID in national health surveillance systems (CDC and NCBDDD, 2009, Glover and Emerson, 2011, Krahn and Fox, 2013, Krahn et al., 2010 and Linehan et al., 2009). As a result, while research has identified the likely existence of health inequalities, information on the extent, patterning and change over time of inequalities in specific localities is rarely available. For example, in Australia, there is as yet no coherent, evidence-based strategy for monitoring the health and wellbeing of people with ID so as to permit comparisons between this population and their peers without disability, or between the states. Without such evidence and strategy, attempts to design interventions, health promotion activities and thus promote the healthy ageing of Australians with ID are likely to falter.
The aims of the present paper are to describe and present results from the Victorian Population Health Survey of People with an Intellectual Disability 2009 (VPHS-ID 2009), the first population level survey in Victoria, Australia and to compare the health and wellbeing of people with ID to the general Victorian population.
