Left Behind: the systemic failure to recognise DEE-SWAS within Australia’s disability framework

A recent ABC News feature highlights that many Australians living with DEE-SWAS are being denied access to support through the National Disability Insurance Scheme (NDIS), because epilepsy is still treated as a medical condition rather than a recognised disability.

The story centres on children like Adeline Leo, who live with DEE-SWAS–related cognitive and behavioural impairments — yet do not qualify for NDIS funding unless they pursue an additional diagnosis such as autism or intellectual disability.

The core issue is that NDIS eligibility requires an impairment to be permanent and functionally disabling. But the impacts of DEE-SWAS fluctuate and are unpredictable, even as they cause serious, long-term cognitive, social and learning disruption. As a result, families are often left to manage intensive therapies, 24/7 supervision and educational exclusion without formal support.

This exposes a critical gap: when a condition sits between health and disability systems, the lived impact can be immense — but the system doesn’t recognise it. It raises urgent questions about who defines disability, whose needs are prioritised, and how bureaucracy deepens inequality. Link to original article: Epilepsy fails NDIS funding criteria because it’s not considered a disability — and these families are suffering