UNSW Sydney researchers are leading a five-year project to transform how young Australians with intellectual disability experience health care as they move into adulthood.

The ‘My Health Choices My Way’ will develop practical resources on navigating the shift from paediatric to adult health care.

The initiative will focus on building health literacy, strengthening self-advocacy, and supporting families and carers through more coordinated, inclusive systems. It is in response 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,” said project lead Professor Iva Strnadová. “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,” she said.

The project brings academic researchers and researchers with intellectual disability, clinicians, educators, self-advocates, and First Nations leaders from across Australia who will work with young people with intellectual disability and their families.

“It is about ensuring young people with intellectual disability have real choices and real voices in their health care,” Strnadová said. “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, Queensland and Victoria, 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.

“The project, 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, 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.”

With over 5,000 health professionals expected to engage in the first year, and resources reaching thousands of families, this initiative is expected to transform how Australia supports young people with intellectual disability through critical life transitions.