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New NDIS Specialised Planners

August 2025: Strengthened support for children with dementia

Over the next 3 months, families affected by childhood dementia will have access to National Disability Insurance Scheme (NDIS) specialised planning designed specifically for their children's complex and changing needs. This systemic change represents a major breakthrough for children living with dementia in Australia.

The new specialised planning approach was developed in response to years of engagement with the National Disability Insurance Agency (NDIA) by Childhood Dementia Initiative. Advocacy was driven by families' consistent reports of significant challenges and strain resulting from accessing NDIS support.

In 2025, Childhood Dementia Initiative delivered to the NDIA the landmark report ‘Brick Wall After Brick Wall: The NDIS Experience for Childhood Dementia Families'. It revealed the main challenges reported by families during consultations, and revealed urgent need for system reform. The NDIS responded to the issues highlighted with rapid implementation of Specialised Planners.

“Family Advocates have been instrumental in achieving this systemic change," says Gail Hilton, Director of Programs at Childhood Dementia Initiative. “Their willingness to relive painful experiences through consultations has transformed how the NDIS will respond to and support children with dementia."

Childhood Dementia Initiative will continue working with the NDIS to refine and improve Specialised Planning based on family feedback.

“We acknowledge the responsiveness of the NDIS to family experiences and appreciate this important partnership to drive change. Every child deserves support that truly responds to them and what they need."

What do new Specialised Planners offer?

Specialised Planners:

  • Provide a dedicated point of contact for families impacted by Childhood dementia
  • Have relevant training
  • Are available to be responsive to any changing needs
  • Can check in with families to make sure the right disability supports are funded in their plan
  • Can collaborate with others involved in a family's support team to ensure appropriate supports are in place

When can families access this?

The NDIA and Childhood Dementia Initiative are working together to support the Specialised Planners and connect families to this strengthened support.

Families who participated in the ‘Brick Wall After Brick Wall' report consultations will be invited to connect with Specialist Planners in the week commencing 10th August. Childhood Dementia Initiative will be working with the NDIS to open up access to the Specialist Planners for all eligible families in coming months.

Why this matters

In early 2025, Childhood Dementia Initiative published ‘Brick Wall After Brick Wall: The NDIS Experience for Childhood Dementia Families' – a comprehensive report documenting families' experiences navigating disability support. The report revealed devastating gaps in current support:

  • The NDIS's planning cycles and focus on building capabilities are fundamentally misaligned with the support needs of impacted families. Children with dementia can experience periods of rapid deterioration with no mechanisms in place in the NDIS to respond to these changes appropriately
  • Families faced months or years waiting for essential equipment, time their children don't have as half die by age 10, most by adulthood
  • Overwhelming administrative burden takes precious time from families. Parents were required to re-tell their child's devastating diagnoses and declining abilities over and over again to remain eligible for support
  • 90% of families reported planners fundamentally misunderstood progressive conditions

Childhood dementia's unique challenges

In Australia, a baby is born every 3 days with a childhood dementia condition. The 100+ genetic disorders that cause childhood dementia are progressive. Children experience:

  • Declining physical and cognitive abilities that require increasingly complex disability support
  • Complex medical needs requiring constant adaptation
  • Life-limiting prognoses requiring sensitive, whole of family support approaches

As their needs escalate and change rapidly, these families are among the most intensive users of the NDIS.