UNE health experts will be leading major projects to help improve the wellbeing of Australians with intellectual disability, especially in rural areas, under two significant Medical Research Future Fund (MRFF) grants.
Professor Stuart Wark, from the School of Rural Medicine, will be the lead chief investigator of a five-year, $1.9 million project aimed at better supporting people with intellectual disability as they age. UNE colleague Professor Kim Usher and adjunct staff Associate Professor Sally Bristow and Professor Sarah Wayland are also part of the team featuring collaborators from Southern Cross University, Western Sydney University, Charles Sturt University, Central Queensland University, Notre Dame University and Trinity College Dublin.
“The complex health needs of older (40 years +) rural people with intellectual disability remain largely overlooked and there are substantial inequalities in healthcare provision,” Prof. Wark said. “They show much earlier signs of ageing than the mainstream population, including the earlier onset of chronic conditions. They are also expected to live, on average, 20 years less, yet support is largely reactive rather than preventative.”
Without a national collaborative framework spanning the healthcare and disability sectors, who delivers healthcare and how is frequently contested. In rural areas, this is further compounded by long waiting times to access health professionals, and implicit and explicit discrimination that does not prioritise people with intellectual disability.
“NDIS (National Disability Insurance Scheme) packages do not provide healthcare support, but some people will require transitional care before they are eligible for aged health services,” Prof. Wark said. “Navigating these health systems can be a struggle. Our work – which represents the first large-scale study of its kind in rural Australia – is all about optimising quality of life and continuity of care. It is also aligned with reforms arising from the NDIS review and recommendations from the Disability Royal Commission.”
Working with people with lived experience across all Australian states, the research team will collect physical and mental health data from individuals annually for three years to learn how their health changes over time, their preferences for treatment and what support is available. By making this information available to disability organisations, service providers and governments, the researchers ultimately hope to contribute to better integrated, community-embedded care.
One potential solution to be investigated is employing online and community-based nurses to provide advice and oversight of healthcare, similar to what has been successfully introduced in Ireland.
“Nurses are well placed to undertake this role as they have the relevant skills needed for competent assessment of health conditions,” said Prof. Kim Usher. “They are also prepared to deliver patient-centred care, can work with other health practitioners in a collaborative manner and have the required skills to advocate for policy change when requested. The trial of a nurse-led model in this study is an important opportunity for future improvement of healthcare issues for people with an intellectual disability residing in a rural and/or remote area of Australia.”
Prof. Wark will also bring his unique rural perspective to another MRFF-funded project hosted by the University of New South Wales. Led by Associate Professor Margo Barr, with Prof. Wark as a chief investigator, it seeks to develop and test a simple AI tool to help identify health changes in people with intellectual disability earlier.
“People with intellectual disability often have trouble communicating,” Prof. Wark said. “This generative AI tool, interacting with wearable devices and monitors, will hopefully pick up subtle health changes that can alert caregivers and inform early intervention from healthcare professionals as part of personalised care plans.”
