Effect of the NDIS on Australian carers of individuals with an autism spectrum disorder

Australian carers have previously reported lower levels of personal well-being and quality of life and elevated levels of dysphoric mood than the general population. It was believed the roll out of the National Disability Insurance Scheme (NDIS), the new model of disability support in Australia, may have a positive effect for carers. The purpose of this study was to monitor any effects the NDIS had on the personal well-being and quality of life in those caring for an individual with an Autism Spectrum Disorder (ASD carer). This longitudinal, online study was the first to control for the effect of carers’ state affect / dysphoric mood on a range of self-report measures. It was important to control for the variance across individuals in dysphoric mood as reporting on some psychometric measures, for example the Parenting Sense of Competency Scale, indicated a link between emotional state and thinking about oneself and carer experience. Notably, ASD carers reported higher levels of dysphoria at each time point so controlling for this difference was essential when comparing groups of carers on other variables. Firstly, factors that may have limited help seeking behaviour prior to the NDIS roll out were investigated. Differences in reported levels of personal well-being and quality of life, between ASD carers caring for an NDIS participant (NDIS carers) and those caring for a NonNDIS participant (Non-NDIS carers), were also identified. Finally, a longitudinal comparison of the same factors between ASD carers and those caring for individuals with other disabilities (Other carers) either participating, or not, in the NDIS was completed. Stage one of the research indicated ASD carers reported slightly higher neuroticism and extroversion compared to the general population however they did not differ in their sense of parental competency. Personality, parental competency and geographic location, had no effect on ASD carers’ help seeking behaviour. In the second stage, NDIS-supported NDIS & Carers of Individuals with Autism 7 carers reported lower personal well-being compared to Non-NDIS carers but both reported a similar quality of life. Time spent in the NDIS did not have any effect on any factors within carer type. Stage three indicated ASD carers reported lower quality of life and personal wellbeing than Other carers. Again, it was found that caring for an individual participating in the NDIS had no effect on either carer type’s reported level of personal well-being or quality of life. The findings from this research suggest that all carers continue to report lower levels of personal well-being and quality of life than non-carers. Alarmingly, ASD carers reported the lowest scores in most instances. The failure of the NDIS to have a positive impact on the personal well-being and quality of life of Australians caring for those supported by the NDIS needs to be further investigated. The evidence for government efforts to reduce the number of individuals with an ASD supported by the NDIS, and the stigmatisation of ASD carers is provided and discussed. The current and long-term damaging effects on carers and for those for whom they provide essential care are linked to these misinformed characterisations by the media and public. The author argues from clinical and economic perspectives that NDISfunded, carer respite be trialled, and research conducted to measure its effect on carer wellbeing and quality of life. NDIS & Carers of Individuals with Autism 8 Acknowledgements As Sir Isaac Newton once wrote “If I have seen further it is by standing on the shoulders of giants” and in that manner I wish to acknowledge the giants who have supported me throughout this project. Dr James Donnelly, Dr Alison Bowling and Dr Mitchell Longstaff, I thank you for your unwavering academic support and personal encouragement. The immeasurable hours of discussion, analysis, and inspiration you have given has enabled me to climb the PhD mountain. I will be forever thankful. To my wife Jodie Maree, none of this would have been possible without your love, encouragement, patience and eternal belief in me. My supervisors may be giants, but you are the foundation on which they balanced. Without you this would not have been possible. To my daughters Tahlia Jade and Indi Grace for your patience when dad was having more ‘screen time’, for all the high fives you gave when a PhD milestone was met, for the smile you put on my face every day, but mostly for your love and kindness during this sometimes long and difficult journey. Finally, my son and inspiration, Lachlan Brandon. You inspire me to be a better man every day. You have taught, and continue to teach, me more about life and myself than any other man. You are my left, my Beluga, my Gecko and my Axolotl. Sadly, I won’t get to share this achievement with those I have lost during this journey – Simon Graham; Natalie Graham; Joe Mace; Alan and Betty Thacker; David Fagerlund; Larry Perry and Kevin Minotti. You all enabled me to complete this work and you are missed. NDIS & Carers of Individuals with Autism 9