Modelling the lifetime social and economic impacts of fragile x syndrome and the benefits of early diagnosis and intervention. This project falls within the National Research Priority, promoting and maintaining good health, through a healthy start to life and strengthening of social and economic outcomes over the course of life. Fragile X is a group of associated genetic disorders affecting individuals across generations. It is the most common identifiable cause of inherited intellectual disabil ....Modelling the lifetime social and economic impacts of fragile x syndrome and the benefits of early diagnosis and intervention. This project falls within the National Research Priority, promoting and maintaining good health, through a healthy start to life and strengthening of social and economic outcomes over the course of life. Fragile X is a group of associated genetic disorders affecting individuals across generations. It is the most common identifiable cause of inherited intellectual disability. About 1 in 4000 males and 1 in 8000 females have Fragile X, but up to 1 in 250 females are carriers. For the first time in Australia, this study will reveal the social and economic impacts on the individual, on their family members who are often the lifelong carers, and on the Australian community, and show how these impacts may be minimised through early intervention.Read moreRead less
Upholding the right to cultural connection for children in care. A positive sense of cultural identity is critical to wellbeing, yet children in out-of-home care often lose their cultural identities and connections. There is little evidence to guide out-of-home care agencies to support a culturally meaningful foster care placement for non-Indigenous culturally and linguistically diverse children. This project tests promising practices identified by the partner organisations and research literatu ....Upholding the right to cultural connection for children in care. A positive sense of cultural identity is critical to wellbeing, yet children in out-of-home care often lose their cultural identities and connections. There is little evidence to guide out-of-home care agencies to support a culturally meaningful foster care placement for non-Indigenous culturally and linguistically diverse children. This project tests promising practices identified by the partner organisations and research literature to produce an exemplary model of cultural care, with input from children, carers and birth families. Trial implementation in the partner organisations will inform guidelines and recommendations so that the model can inform policy and practice in out-of-home care across Australia.
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