Towards Evidence-based Care For Rett Syndrome: A Research Model To Inform Management Of Rare Disorders
Funder
National Health and Medical Research Council
Funding Amount
$458,046.00
Summary
Rett syndrome is a rare but serious genetic neurological disorder affecting mainly girls and often complicated by spinal curvature and poor growth. This project will use national register data collected over 16 years to examine change in functional abilities and progression of the scoliosis curve. It will develop guidelines and improve processes to assist with diagnosis and will comprehensively evaluate the surgical treatments used in the management of scoliosis and growth problems.
Planning for a better life under the National Disability Insurance Scheme (NDIS). This project aims to analyse and define the experiences and expectations of people with disability in rural and remote regions. People accessing the National Disability Insurance Scheme (NDIS) are required to complete a personalised service plan, however despite these reforms, people in rural and remote communities currently experience many challenges with the scheme. Using qualitative research methods, the project ....Planning for a better life under the National Disability Insurance Scheme (NDIS). This project aims to analyse and define the experiences and expectations of people with disability in rural and remote regions. People accessing the National Disability Insurance Scheme (NDIS) are required to complete a personalised service plan, however despite these reforms, people in rural and remote communities currently experience many challenges with the scheme. Using qualitative research methods, the project will investigate people’s experiences engaging with Local Area Coordinators and Planners under the Rural and Remote Strategy 2016-2019 and Aboriginal and Torres Strait Islander Engagement Strategy. The project will provide significant outcomes for Aboriginal and non-Aboriginal people with disability in rural and remote areas, disability service providers, and government and non-government policy makers.Read moreRead less
Remote Aboriginal families and carers of children with disabilities. The project intends to explore the challenges that Aboriginal families who have children with disabilities experience when living in remote communities. Living in a community with family supports is important for the wellbeing, health and spirituality of Aboriginal people in the Ngaanyatjarra Pitjantjara Yankunytjatjara (NPY) lands. However, the NPY Women’s Council are concerned that this is a significant challenge for families ....Remote Aboriginal families and carers of children with disabilities. The project intends to explore the challenges that Aboriginal families who have children with disabilities experience when living in remote communities. Living in a community with family supports is important for the wellbeing, health and spirituality of Aboriginal people in the Ngaanyatjarra Pitjantjara Yankunytjatjara (NPY) lands. However, the NPY Women’s Council are concerned that this is a significant challenge for families and carers of children with disabilities. Project results will be used to propose models for supporting children with disabilities and their families and caregivers to live good lives in their communities. The outcomes are expected to inform service redesign to allow Aboriginal people to fully benefit from the National Disability Insurance Scheme.Read moreRead less