NDIA Accountability Project

Submission 175 — SCN2A Australia — Inquiry into the Thriving Kids initiative

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Submission to the House of Representatives Standing Committee on Health, Aged Care and Sport

Submitted by: SCN2A Australia

Introduction

SCN2A Australia is a national, not-for-profit organisation representing families affected by SCN2A-related disorders. These conditions fall within the broader classification of developmental and epileptic encephalopathies (DEEs), recognised by the International League Against Epilepsy in 2017.

Children with DEEs represent some of the most vulnerable in our community. They live with a rare, genetic and permanent neurological conditions. The severity and presentation can vary. Most children experience profound and life-limiting impairments, requiring intensive and lifelong support across health, disability and education systems. A much smaller group have less severe impairments, particularly if seizures are controlled with medication, but still require coordinated, ongoing support across multiple systems.

We understand that the Thriving Kids initiative will be for children ages 8 and under with mild to moderate development delay and/or autism. Whilst we note “mild to moderate” has not been defined, a very small portion of children with DEEs are likely to fall into this category.

We also hold serious concerns that children and adults with DEEs that may have more severe development delay, autism and other impairments, risk losing access to the NDIS under the proposed changes. We welcome the opportunity to make a submission to the Thriving Kids Initiative, to highlight the specific challenges faced by this community and recommend design features for Thriving Kids that ensure children with DEEs are properly recognised and supported.

Key Issues

1. Nature and Complexity of DEEs

  • DEEs are genetic, permanent neurological conditions usually presenting in the first two years of life.
  • The neurological condition leads to epilepsy, which is very often severe and refractory (uncontrolled with medication).
  • Some children present with complex autism and developmental differences initially, with seizures and other co-morbidities emerging later.
  • Over time, children may develop multiple disabilities, including profound intellectual disability, movement disorders, sensory impairment, feeding difficulties, and physical disability.
  • In the most severe cases, these conditions are life-threatening, requiring access to paediatric palliative care alongside therapies and medical treatments.

2. NDIS Access Pathways

  • Families consistently report their children being granted access under the early intervention pathway for “developmental delay”, rather than the disability stream.
  • In part, this seems to be because DEEs are not currently represented on List A, B or D in the “Applying to the NDIS” Guideline.
    • Lennox-Gastaut syndrome (a type of DEE) appears under List B and D, but the broader group of DEEs—and the many ultra-rare conditions without named syndromes—are excluded.
    • This omission results in inconsistent decisions and forces families into repeated functional assessments.
  • The misclassification of DEEs as simply “development delay” :
    • Fails to recognise the permanence and severity of DEEs
    • Risks exclusion following changes to eligibility requirements once Thriving Kids in established
    • Escalates family stress, forcing parents already under extraordinary pressure to contest or re-prove eligibility
  • Families caring for children with DEEs live with constant hospitalisations, medical crises, and multi-disciplinary care coordination. Access to the NDIS should be seamless and provide stability, not additional complexity

The proposed Thriving Kids initiative should not become the default pathway for children with DEEs. While a small number may be appropriately supported through Thriving Kids in the early years, most children with DEEs have permanent and significant disability that requires recognition within the disability stream of the NDIS. Without clear safeguards, there is a serious risk that children will be diverted away from the NDIS when they require its ongoing disability supports.

3. Mainstream supports

Currently, families report fragmented experiences, with health, education and community systems operating in silos. This leads to repeated re-telling of a child’s history, delays in accessing therapies and supports, and missed opportunities for inclusion. Thriving Kids must address these gaps by embedding coordination across mainstream systems and ensuring continuity of support through key transition points.

Inclusive mainstream settings are vital for all children with DEEs, including those on the NDIS. Families need schools, early childhood services, health and community supports that work in partnership with the NDIS, not in isolation. Thriving Kids has the potential to drive this change, creating a more consistent and inclusive foundation for children and families.

For the DEE community, a robust Thriving Kids program can:

  • Ensure early identification of developmental delay, even before seizure onset
  • Support inclusive participation in early education and school settings
  • Reduce the burden on families by providing coordinated, consistent support across health, disability and education
  • Actively support families to access the NDIS when a child’s disability and support needs becomes more severe, ensuring continuity of support without delay or duplication

Recommendations

  1. Recognition

    • Include developmental and epileptic encephalopathies as a group in List B and List D, reflecting their high likelihood to result in a permanent impairment

  2. Consistency

    • Provide clear guidance to NDIA assessors to ensure children with DEEs are classified under the disability stream, not only early intervention.

  3. Review Process

    • Establish a transparent, regular mechanism for updating Lists A,B and D as scientific knowledge advances.

    • SCN2A Australia would welcome the opportunity to participate in this review process and to contribute ongoing input as a representative body for complex, life-threatening neurological conditions.

  4. Thriving Kids design principles — Shape the Thriving Kids program to be a systemic capability building initiative that:

    • provide a strong system of inclusive foundations supports for the small cohort of children with DEEs who present only with mild to moderate developmental delay and/or autism

    • ensure mainstream services (health, early childhood, education, community) work seamlessly with each other and in partnership with the NDIS

    • actively support families to transition into the NDIS if a child with a DEE’s disability and support needs become more severe, avoiding gaps or duplication

    • strengthen inclusive practice in all early years and education settings so that children with DEEs, including those on the NDIS, benefit from environments that support their participation alongside peers

Conclusion

Children with DEEs, including SCN2A, live with lifelong, complex, and often life-limiting conditions. Families are already stretched to breaking point by the demands of care, yet the NDIS often compounds this stress through misclassification, lack of recognition, and inconsistent assessment processes.

The Thriving Kids Initiative provides a critical opportunity to strengthen inclusive mainstream supports and improve coordination across systems. However, it must be carefully designed with safeguards to ensure children with permanent and significant disability, such as those with DEEs, are not diverted away from the NDIS.

We urge the Committee to recommend the NDIA recognise DEEs explicitly and strengthen access pathways and include SCN2A Australia and similar organisations in future engagement processes as the Thriving Kids initiative takes shape.