“Good Luck Out There Without NDIS”: Challenges Accessing Individualized Support Packages by Autistic Young People Leaving School

Abstract

Introduction: The transition from schooling to adulthood is an important and complex time in a young person’s life, especially when they have a disability. For young autistic people, it is critical to receive the right support to ensure a successful transition. In Australia, disability supports are provided by the National Disability Insurance Scheme (NDIS), a scheme implemented and administered by the Australian Government (specifically the National Disability Insurance Agency [NDIA]) since 2013. Implementation of Australia’s NDIS has been inadequate in supporting the needs of many autistic young people. Autistic people are the largest group of participants in the NDIS. Support for this group is important considering the significant investment involved in the provision of NDIS funding, coupled with the potential negative consequences if they are not well-supported. This study explores the experiences of key stakeholders in relation to young autistic school leavers and their challenges accessing NDIS Tier 3 individualized support packages.

Method: This study adopted a qualitative methodology using a constructivist paradigm. This study draws on the perspectives of four key groups: young autistic people, parents/carers, educators, and disability service providers. Reflexive thematic analysis of the interview data was conducted.

Findings: Two overall themes were identified. The first theme was related to fighting to get access to the NDIS, encompassing subthemes related to the NDIS maze, a heavy emotional and practical toll as well as inconsistencies in access. A second theme highlighted a worry for the future if autistic young people did not receive the support they needed postschool. Findings highlighted a range of difficulties accessing individualized funding packages (Tier 3) for autistic young people. There has been a critical failing of service provision at “Tier 2” of the NDIS (also referred to as information linkages and capacity building or foundational support), which was intended to facilitate access and participation in mainstream community services for people with disability. This placed additional pressure on Tier 3 and exacerbated the toll that interacting with the NDIS took on participants.

Conclusion: Urgent work is needed to ensure that systems within the NDIS are funded appropriately and operating as intended to ensure good and equitable outcomes for autistic people leaving school.