The death of Stewart Kelly in 2022 continues to serve as a reminder of the need for Australia’s health system to be better equipped to meet the needs of people with intellectual disability. As outlined in the National Centre of Excellence in Intellectual Disability Health’s media release, an Ombudsman investigation found hospital staff lacked the training needed to understand and respond to Mr Kelly’s complex support needs.
New research has revealed a confronting life-expectancy gap for people with intellectual disability in NSW, highlighting persistent and preventable inequities in health outcomes.
The research, Life Expectancy of People with Intellectual Disability, led by Associate Professor Preeyaporn Srasuebkul, which examined morbidity and mortality outcomes for people with intellectual disability, found life expectancy at birth was 67 years – 16 years shorter than the NSW average. The gap is even wider for people with Down syndrome.
Ongoing barriers such as poor communication, delayed diagnosis and a lack of reasonable adjustments in healthcare settings continue to contribute to poorer health outcomes across the lifespan.
The National Centre of Excellence in Intellectual Disability Health has been clear that better outcomes are possible, but only if the system is equipped to deliver them. Its recent Position Statement sets out the core capabilities all health professionals should have when caring for people with intellectual disability, including effective communication, genuine partnership in care and the ability to adapt services to individual needs. Crucially, it calls for a nationally coordinated approach to embed these skills into health education and training.
When it comes to palliative care, people with intellectual disability are experiencing increasing rates of life limiting conditions but face multiple barriers to accessing quality palliative care. Between 2021 and 2024, 3DN completed a mixed-methods research examining access to and the impact of palliative care for people with intellectual disability. The linked data studies and stakeholder consultations provided an enhanced understanding of the unique needs of people with intellectual disability with life-limiting conditions and have informed guidance on tailoring palliative care services for this group. This has included the development of a tailored model of palliative care for people with intellectual disability to guide all health professionals and service managers involved in the provision of palliative care
This important topic will be explored further at our Annual Professional Education Day on Friday 15 May. Dr Rachael Cvejic – Senior Research Fellow from the National Centre of Excellence in Intellectual Disability Health, UNSW Medicine & Health will present on Improving Palliative Care for People with an Intellectual Disability.
For more information about this event and to register for one of 10 locations across the state, please click here: https://palliativecarensw.org.au/event/2026-professional-education-day/
Nothing can undo the loss experienced by Stewart Kelly’s family and loved ones. But with improved understanding, education and training, care can be provided that is safer, more inclusive and better equipped to meet the needs of people with intellectual disability.