There is an increasing need for organisations to ensure that their programs and practices are informed by, if not grounded in, well-conducted, relevant, scientific research. The Melbourne Disability Institute’s Community-Based Research Scheme aims to meet the research needs of community organisations by providing research support and evaluation of innovative programs that are making a difference in the lives of people with disability, their families and carers. UsherKids is thrilled to be working along side research experts at The University of Melbourne to provide evidence-based information on how to better support the needs of children with Usher syndrome in Australia.  A summary of our project is below:

UsherKids Australia Ltd | Understanding the needs of families of young children with Usher syndrome in Australia

By understanding the needs of families of young children with Usher syndrome in Australia,  service providers, educators and clinicians can be better informed to provide the improved interventions, care and support that will make a lasting impact on the long term health and wellbeing outcomes of this unique demographic. This project will include a series of in-depth case studies of Victorian families  to determine what are the experiences of these children and their families and what are barriers and facilitators to best meeting the needs of these children and families.

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