Understanding the NDIS experience: a qualitative study on participant perspectives

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.