Understanding the NDIS experience: a qualitative study on participant perspectives

Mark Brown; Kate D’Cruz; Stacey Oliver; Di Winkler; Jacinta Douglas

doi:10.1071/IB24103

RESEARCH ARTICLE (Open Access)

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Understanding the NDIS experience: a qualitative study on participant perspectives

Mark Brown ^A ^B , Kate D’Cruz

^A ^B ^* , Stacey Oliver

^A ^B , Di Winkler ^A ^B and Jacinta Douglas ^A ^B

+ Author Affiliations

- Author Affiliations

^A School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia.

^B The Summer Foundation, Melbourne, Australia.

^* Correspondence to: K.DCruz@latrobe.edu.au

Handling Editor: Alice Theadom

Brain Impairment 26, IB24103 https://doi.org/10.1071/IB24103

Submitted: 4 October 2024 Accepted: 25 May 2025 Published: 12 June 2025

© 2025 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

The National Disability Insurance Scheme (NDIS) looms large in the lives of Australians with disability. This qualitative study aimed to better understand the experiences of NDIS participants interacting with the scheme in the management of their supports.

Methods

Thirteen adult NDIS participants, including 10 people with neurological disability, were interviewed. Interviews were audio recorded and transcribed, and interview data were analysed using constructivist grounded theory methods.

Results

Analysis provided insights into NDIS participants experiences. Participants described improvements in their lives since joining the scheme, alongside experiences of frustration with the challenges of navigating the scheme. Three key themes, and associated sub-themes, were identified: (1) living a better life, (2) losing trust in the NDIS, and (3) hopes for the future.

Conclusions

The findings highlight a complex interplay of gratitude alongside fear and frustration among NDIS participants with complex disability. While participants welcomed increased choice and control, they also expressed concerns about inequities and difficulties in navigating the scheme. The importance of supportive interpersonal relationships, or ‘allies’, in successfully navigating the NDIS was emphasised. For reforms to be effective and responsive, it is critical they are designed and implemented in partnership with people with lived experiences as NDIS participants.

Keywords: acquired brain injury, cerebral palsy, disability, lived experience, multiple sclerosis, National Disability Insurance Scheme, neurological disability, Qualitative research.

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