This qualitative study aimed to better understand the experiences of National Disability Scheme (NDIS) participants interacting with the scheme in the management of their supports. Thirteen adult NDIS participants, including 10 people with neurological disability, were interviewed. Participants described improvements in their lives since joining the scheme, alongside experiences of frustration with the challenges of navigating the scheme. Three key themes were identified: living a better life, losing trust in the NDIS and hopes for the future. 

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.