Profound Pathways: Health care transition and decision making for young adults with severe and profound intellectual disabilities

This project aims to improve health care transition and decision-making for young adults with severe and profound intellectual disabilities. It is a 4-year consumer-led research program funded by the Medical Research Future Fund ($992,776, 2026–2030). Young adults with severe and profound intellectual disabilities face some of the most difficult transitions in the health system: moving from children's to adult health services, and navigating health care decisions they cannot make alone. Profound Pathways will co-design national guidelines for health care transition and health care decision-making, along with a Policy to Practice Framework and resources for consumer and community involvement. The program is led by Dr Michelle King, a researcher with lived experience as the parent and primary support person of an adult daughter with profound intellectual and multiple disabilities, working alongside consumer investigators who bring their own lived experience to the leadership of the project. A defining feature is the pair approach, a novel method that supports people with severe and profound intellectual disabilities to be genuinely included in research governance and data collection, in partnership with someone who knows them well.