The NDIS: Where do carers stand? and Understanding the Neuropsychiatric Features of FXTAS


Sarah Judd, Policy and Development Officer, Carers NSW. The NDIS: Where do carers stand?

The National Disability Insurance Scheme (NDIS) presents an unprecedented opportunity for Australians with permanent and significant disabilities to receive the lifelong support they need to pursue their goals and participate in their communities. The first two years of the NSW trial of the NDIS has resulted in significant positive achievements, but has also highlighted a range of challenges and concerns for informal carers. The National Disability Insurance Agency (NDIA) has been responsive to feedback on the issues arising for carers, and considerable progress has been made with regard to carer recognition, inclusion and support. However there is still room for growth. Better information, greater inclusion and increased support are needed to help carers transition to the NDIS. This talk will summarise the findings and recommendations from the 2014 Carers NSW issues paper The NDIS one year in: Experiences of carers in the Hunter trial site. It will alsoreport on key developments in policy and practice since its publication, highlight ongoing and newly arising issues for carers and outline how Carers NSW is supporting carers to understand and engage with the NDIS.

Sarah Judd is a member of the Policy Team at Carers NSW, where she analyses Government policies relating to disability and housing and systemically advocates for informal carers in these areas. Sarah is also responsible for producing a suite of resources for carers on the National Disability Insurance Scheme (NDIS). In 2014 she published an issues paper on the experiences of carers in the NDIS Hunter trial site and is currently co-developing a workshop for carers on the NDIS. Sarah has worked with Carers NSW for two years, prior to which she worked in in social policy research and analysis at the City Futures Research Centre at the University of New South Wales (UNSW). Her educational background is in the social sciences and in 2013 she completed a Masters by Research at UNSW exploring the housing issues experienced by overseas students.

Rachael Birch, PhD Candidate, 3DN, UNSW. Understanding the Neuropsychiatric Features of FXTAS

Rachael is a registered psychologist who recently submitted her PhD thesis at 3DN. As part of her PhD, Rachael has established and comprehensively characterised a cohort of adult males who carry premutation expansions of the fragile X mental retardation 1 (FMR1) gene. Carriers of the FMR1 premutation are at risk of developing fragile X-associated tremor ataxia syndrome (FXTAS); a neurodegenerative disorder characterised by the progressive development of intention tremor, gait ataxia, parkinsonsism and cognitive decline. Rachael’s research integrates data obtained from neuropsychological, neuromotor, and psychiatric assessments, together with structural neuroimaging and FMR1 measures to determine the interrelationships between clinical, radiological and genetic markers among this cohort.

Enquiries: Rachel Roth -