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Access specialised NDIS planning for children with dementia here
The NDIA and Childhood Dementia Initiative are working together to support Specialised Planners and connect families to strengthened support for children and young people with childhood dementia.
Fast-track your access to specialised planning for families affected by childhood dementia
We help families access the NDIS specialised planning designed specifically for children with conditions that cause dementia in childhood.
Specialised Planners are available to act as dedicated points of contact for families impacted by childhood dementia. These Specialised Planners will have relevant training and are available to be responsive to any changing needs. They can check in with you to make sure the right disability supports are funded in your plan. They can also collaborate with others involved in your support team to ensure appropriate supports are in place.
Specialised Planners trained in childhood dementia
Dedicated point of contact
Understanding of childhood dementia and its progressive nature
Responsive to changing needs
Simple 4-step process
From registration to support
Verification
We will email you confirming your eligibility.
NDIS contact
Dedicated Planner contact within 5 business days.
Support begins
Start accessing specialised planning & support.
How do you know if you're eligible?
Children diagnosed with one of these conditions are eligible for this specialised planning approach. ‘Childhood dementia' is an umbrella term for more than 140 rare genetic disorders that cause progressive brain damage in children.
Already on the NDIS?
Register here to be fast-tracked to specialised planning designed specifically for children with dementia. Involvement in being supported by Specialised Planners will be voluntary and by consent of the Child Representative. If you would prefer to continue to be supported through your Early Childhood Partner or existing NDIA contact, you can continue to do so.
Why we need your information
To fast-track your access to planning designed for children with dementia, we need to verify your child's diagnosis and NDIS participant number. This helps connect you to the specific services your family needs. All information is kept strictly confidential and only used to facilitate your access to specialised planners.
Why is there a specialised planning approach for children with dementia?
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 the urgent need for system reform. You can read Childhood Dementia Initiative's position statement on the NDIS here. The NDIS responded to the issues highlighted in ‘Brick Wall after Brick Wall' with rapid implementation of this specialised approach.
What other services are available for my family?
Learn more about the growing range of resources and support available for families and carers impacted by childhood dementia.
Register to access Specialised Planners for children with dementia
Having problems filling in this form? Contact us at services@childhooddementia.org
