Exploring the wellbeing of Australian families engaging with the National Disability Insurance Scheme in rural and regional areas

Abstract

Being the parent of a child with a disability and complex medical condition has been described as one of the most life-affirming, meaningful and challenging things a person can do. Co-ordinated supports are important to ensure the inclusion, participation and wellbeing of all family members. Australia’s National Disability Insurance Scheme (NDIS) is designed to support Australians aged under 65 years who have a disability. Concerns have emerged regarding inequities in access to services provided within this scheme. The aim of this study was to explore the experiences of families living outside urban areas and engaging within the scheme. Utilising interpretative phenomenological analysis, this research provides important insights into the contextual factors that influence the subjective wellbeing of all family members and the manner in which the market-based NDIS may produce inequities in wellbeing outcomes for families.

Points of interest

• This article looks in detail at the lived experiences of families navigating supports provided under the National Disability Insurance Scheme (NDIS) and other primary service systems in rural regions across Eastern Australia.

• Each family included within this study experienced multiple episodes of delays, feelings of isolation and fears that their family member was missing out on essential supports and services, despite having approved funding packages under the NDIS.

• All participants in this study highly regarded, valued and respected their children and worked to ensure their safety and wellbeing. Their frustration was not for their children but for the failure of the NDIS to demonstrate these values.

• This paper is an important contribution to research in disability studies, and also has the potential to influence further development in this field and in shaping the future of the NDIS.

Keywords:

• Family
• wellbeing
• NDIS
• regional
• rural
• Australia

Acknowledgements

I would like to sincerely thank each and every family and research participant who contributed to this study. To my beautiful husband Shane and of course, our five babies, whose love, support and struggles through complex health conditions paired with disability inspired me to want to change the world. And without whom, none of this would have been possible. I love you.

Disclosure statement

The author states no potential conflict of interest, financial or otherwise, in preparing this paper.