UNSW Sydney researchers will lead a $2 million five-year project to transform how young Australians with intellectual disability experience health care as they move into adulthood.
Funded through the federal government's Medical Research Future Fund, 'My Health Choices My Way' will develop practical resources to help young people with intellectual disability navigate the shift from paediatric to adult health care.
The five-year initiative will focus on building health literacy, strengthening self-advocacy, and supporting families and carers through more coordinated, inclusive systems. It responds to key priorities outlined in Australia's National Roadmap for Improving the Health of People with Intellectual Disability, opens in a new window.
"Young people with intellectual disability often face unfair health care transitions. Current gaps include limited health literacy education and support, lack of coordinated care between paediatric and adult services, and insufficient opportunities for young people to develop self-advocacy skills. Families and carers frequently bear the burden of navigating these complex systems alone," said project lead Professor Iva Strnadová, opens in a new window, an internationally recognised expert in inclusive education and disability research from UNSW's School of Education and Disability Innovation Institute.
The project brings together an unprecedented coalition of academic researchers and researchers with intellectual disability, clinicians, educators, self-advocates, and First Nations leaders from across Australia, working in genuine partnership with young people with intellectual disability and their families. Its aim is to address long-standing gaps in health care access, coordination, and communication that disproportionately affect young people with intellectual disability and their families.
"This project is about ensuring young people with intellectual disability have real choices and real voices in their health care," said Professor Strnadová. "We're building tools and systems that reflect their needs, values, and rights."
'My Health Choices My Way' will:
• Empower young people with better health literacy and self-advocacy skills.
• Support families and carers through streamlined transition processes.
• Provide health professionals with inclusive, evidence-based tools.
• Set national benchmarks for equitable health care transitions.
Key deliverables include:
- A suite of co-designed transition support tools for young people, families, and professionals.
- A Health Care Transition Toolkit for clinicians, including CPD-accredited training.
- Australia's first National Recommendations for Transitions from paediatric to adult health care for this population.
- Culturally safe pathways developed in partnership with Aboriginal and Torres Strait Islander communities.
The initiative will be piloted across hospitals, general practices, schools, and advocacy organisations in NSW, QLD, and VIC over the five-year period, with a national rollout planned through the established network of Centres of Clinical Excellence. Tailored approaches will be developed in partnership with First Nations communities.
"This project will build on our foundational UNSW-led GeneEQUAL program of research," said project co-lead and Chief Investigator Dr Emma Palmer, opens in a new window, from UNSW's Discipline of Paediatrics & Child Health.
"It will address a clearly identified priority of people with intellectual disability and their families, supporters and clinicians. This is to understand how to empower young people with intellectual disability to be active participants in their own health care. It is innovative in that it brings together health, education and disability sectors, which often work in isolation." Scientia Indigenous Professor Kevin Lowe, opens in a new window, from UNSW's School of Education and leader of the impactful Culturally Nourishing Schooling, opens in a new window project, which developed teaching approaches centred on Indigenous knowledges and practices for schools, will be working to bring a similar approach to health transitions.
"Developing culturally safe pathways will mean working in genuine partnership with communities to create health care transitions that are effective because they are culturally grounded and empowering," he said.
Research that is co-produced and inclusive
The research team includes researchers with lived experience of intellectual disability and the transition support tools will be developedwith the community to ensure their design is fit for purpose.
"The project itself and the way we will conduct it is all about empowering young people to make their own health choices," said project co-lead and Chief Investigator Julie Loblinzk Refalo OAM, a researcher with intellectual disability. "We want to support people with intellectual disability to be able to get the care that they want in a way that keeps them at the centre of making decisions about their lives."
The project builds on five years of inclusive research and successful models like the GeneEQUAL Toolkit, which reached over 16,000 users in 69 countries. It will be embedded into clinical practice through partnerships with organisations including NSW Health, the Royal Australian College of General Practitioners and the National Centre of Excellence in Intellectual Disability Health.
"This research is designed with a goal of creating inclusive and equitable health care practices for people with intellectual disability," said Professor Strnadová. "It's an approach that has the potential to fundamentally transform how we support young people through these critical life transitions."
With over 5,000 health professionals expected to engage in the first year, and resources reaching thousands of families, this initiative will transform how Australia supports young people with intellectual disability through critical life transitions.
