Rights, policy design and the path forward: preventive health equity for people with intellectual disabilities in Australia

Twenty years after the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and nearly two decades after Australia’s ratification, the right to the enjoyment of the highest attainable standard of health under Article 25 remains unevenly realised. This is especially demonstrable within domains of preventive health care. People with intellectual disabilities experience higher rates of preventable illness and premature mortality than the general population, with life expectancy at birth estimated to be 16 years lower than for people without intellectual disabilities. Despite increased policy attention, structural barriers remain. These include inaccessible health information, fragmented service pathways and inadequate support for participation in health decision-making. This article applies an iterative inquiry approach informed by systems thinking to critique how Australia’s preventive health policy architecture supports or constrains the realisation of Article 25. We critique key national policy instruments, including the National Preventive Health Strategy, Australia’s Disability Strategy and the National Roadmap for Improving the Health of People with Intellectual Disability, alongside findings from the Disability Royal Commission and the Commonwealth COVID-19 Response Inquiry. Using vaccination and cardiovascular disease prevention as case studies and drawing on insights from co-authors with intellectual disabilities, we demonstrate how gaps in governance, workforce capability, service coordination and accessible communication reinforce inequities across preventive care pathways. We identify leverage points for reform and argue that achieving preventive health equity requires moving away from parallel initiatives between disability and health sectors, toward structural integration of disability-specific measures within mainstream health policies.

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Publication Details

Journal
Research and Practice in Intellectual and Developmental Disabilities
Published
2026-10-14
DOI
https://doi.org/10.1080/23297018.2026.2739310
Primary Topic
Down syndrome and intellectual disability research
Type
article
Field-Weighted Citation Impact
0.00

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article

Rights, policy design and the path forward: preventive health equity for people with intellectual disabilities in Australia

R. De Greef, Julian Norman Trollor, Katie Brooker, Maryann Barrington et al.
Research and Practice in Intellectual and Developmental Disabilities
Down syndrome and intellectual disability research
article

Rights, policy design and the path forward: preventive health equity for people with intellectual disabilities in Australia

R. De Greef, Julian Norman Trollor, Katie Brooker, Maryann Barrington, Kitty‐Rose Foley, Susan Adrian, Stefan Carlo Michalski, Tahli Hind, Meggan J. Devery, Siobhan Humphreys
article en

Abstract

Twenty years after the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and nearly two decades after Australia’s ratification, the right to the enjoyment of the highest attainable standard of health under Article 25 remains unevenly realised. This is especially demonstrable within domains of preventive health care. People with intellectual disabilities experience higher rates of preventable illness and premature mortality than the general population, with life expectancy at birth estimated to be 16 years lower than for people without intellectual disabilities. Despite increased policy attention, structural barriers remain. These include inaccessible health information, fragmented service pathways and inadequate support for participation in health decision-making. This article applies an iterative inquiry approach informed by systems thinking to critique how Australia’s preventive health policy architecture supports or constrains the realisation of Article 25. We critique key national policy instruments, including the National Preventive Health Strategy, Australia’s Disability Strategy and the National Roadmap for Improving the Health of People with Intellectual Disability, alongside findings from the Disability Royal Commission and the Commonwealth COVID-19 Response Inquiry. Using vaccination and cardiovascular disease prevention as case studies and drawing on insights from co-authors with intellectual disabilities, we demonstrate how gaps in governance, workforce capability, service coordination and accessible communication reinforce inequities across preventive care pathways. We identify leverage points for reform and argue that achieving preventive health equity requires moving away from parallel initiatives between disability and health sectors, toward structural integration of disability-specific measures within mainstream health policies.

Research and Practice in Intellectual and Developmental Disabilities
UNSW Sydney (AU), Mater Research (AU)
Australian Government, National Health and Medical Research Council
Reduced inequalities, Good health and well-being
Openalex Percentile: Top 11%
Down syndrome and intellectual disability research
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