‘I’m not really sure but I hope it’s better’: early thoughts of parents and carers in a regional trial site for the Australian National Disability Insurance Scheme

Amanda R. Hiles Howard · Tamara Blakemore · Lou Johnston · Rani Dibley

46 citations0/0 files storedDisability & Society

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Healthcare innovation and challenges Disability Rights and Representation Family and Disability Support Research

Abstract

The National Disability Insurance Scheme (NDIS) is one of the most significant initiatives in Australian social policy history. Its complexity has been compounded by a fast-paced introduction and ongoing refinement throughout the initial trial phase. Parents and carers of very young disabled children face particular challenges accessing and navigating NDIS systems. This article presents findings from a mixed-method pilot study examining the perspectives of parents and carers of disabled children in one NDIS trial site – the Hunter Region of New South Wales. The research highlights a number of policy assumptions potentially impacting on NDIS take up for young disabled children and their families in regional contexts. Based on research findings a number of policy suggestions and improvements for disabled children and their families entering the NDIS and other individualised funding schemes are outlined.

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References

2009The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities 2012Disability Care and Support 2004Friend or Foe? Towards a Critical Assessment of Direct Payments 2006Storying Disability and Impairment: Retrospective Accounts of Disabled Family Life 2011The impact of intellectual disability, caregiver burden, family functioning, marital quality, and sense of coherence 2005The Development of Direct Payments in the UK: Implications for Social Justice 2011Information and professional support: key factors in the provision of family‐centred early childhood intervention services 2013Carer and service providers’ experiences of individual funding models for children with a disability in rural and remote areas

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2023Real change or more of the same? Analysing Australian media's portrayal of intellectual disability during the NDIS rollout

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