New research from Western Sydney University, conducted and funded in partnership with major not-for-profit disability service provider Northcott, has shed light on the challenges autistic young school leavers face when trying to access NDIS support.
Recently published in Health and Social Care in the Community , the study is the first to explore the experiences of autistic school leavers, their families, teachers, and service providers in the context of NDIS Tier 3 support – a higher level of support for participants whose situations are more complex and who need specialist assistance.
The research involved 39 participants and over 40 hours of in-depth qualitative interviews, revealing two key themes:
- "Fighting" the NDIS: Navigating an often inconsistent and unfair process that leaves participants feeling emotionally exhausted, re-traumatised, and unsafe.
- "Worry" for a future without funding: With the NDIS seen as the primary avenue for support, the stakes for gaining access are incredibly high, and the consequences of being denied funding are dire.
Lead author Dr Caroline Mills from the School of Health Sciences and Translational Health Research Institute, said the transition from schooling to adulthood is an important and complex time in a young person's life, especially when they have a disability.
"With autistic people now making up the largest group of NDIS participants, it is critical they receive the right support to ensure a successful transition," said Dr Mills.
Co-author Professor Danielle Tracey from the School of Education, emphasised the reliance on Tier 3 individual funding packages.
"What we are hearing from young autistic people, their families and teachers is an absolute reliance on NDIS Tier 3 support. So, when this is not available, they feel stranded and alone. Through this research – supported by Northcott - and sharing their stories, we hope to bring attention to the needs of this particular group embarking upon adulthood," said Professor Tracey.
A participant in the study described the experience as: "I'm literally head butting my head against a brick wall…" while others expressed fears about a future without access to services needed for employment, education, and independence.
One of the autistic participants said, "you have to make it (your disability) sound worse than it is". This was in response to the desperation that participants are feeling. There has been a narrative around 'reigning in' funded supports because they are expensive and people are being left behind in this process.
One of the service providers suggested that the government doesn't want to fund it, because of the expense: "…it's almost like government doesn't want them (people with disability) to access (the NDIS)".
The research team is advocating for increased investment in foundational supports, especially at the critical point when a young autistic person leaves school, to ensure no young person is left behind.
This research would not have been possible without the support of Northcott, whose commitment to driving positive outcomes for people with disability continues to create real impact.
