Quote from an attendee:
I think it is important, the old, 'you don't know what you don't know...' guidance is needed when connecting and applying to the NDIS.
What we talked about
Topic 1: Connect and Apply
The Group talked about how future ideas could improve the ‘Connect’ and ‘Apply’ steps for parents, carers, and children under 9 years old engaging with the NDIS. This built on the challenges they found in Meeting #7.
In small break out groups the discussion focused on the experiences and ideas shared by attendees across key stages:
- Recognising a need and seeking help
- Learning about the NDIS
- Referral to, receiving, and outcome of foundational supports
- Applying to the NDIS
Facilitators guided the conversation using questions such as:
- Who are the key actors or organisations that should be involved at each stage?
- What information or tools would be most helpful?
- How might these steps differ depending on the child’s circumstances or disability?
What we heard
Recognising a need and seeking help
- Parent and carers said they usually find out about the NDIS only after a GP or paediatrician suggests it, once their child is found as needing extra support.
- Parents and carers noted that health professionals often have inconsistent knowledge about the NDIS and disability support and strongly suggested a training improvement.
- Parent and carers value support from other parents as a way of providing practical advice and a sense of belonging, especially during the early stages of seeking help when families can feel isolated and overwhelmed.
- Parents and carers expressed a need for more help on how to connect with community and mainstream support options that are available to them.
Referral to, receiving and outcome of Foundational Supports
- Parent and Carers support the idea of having empathetic, culturally aware, and well-informed Navigators to help them explore support options and connect with Foundational Supports.
- Trust and consistency are key to building a strong relationship where parents and carers feel confident relying on a Navigator for help.
- Parents and carers stressed that referral processes should feel friendly, not unfriendly.
- The process needs to be simple and straightforward, and the person making the referral should already understand the child’s existing supports and care plans.
Applying to the NDIS
- Parent and carers support information sharing between mainstream and community services and Foundational Supports (when stood up) and the NDIS to help ensure a smooth move but believe it should be opt-in with the parent’s consent.
- Parents and carers want the chance to review and check what’s being shared to avoid errors or confusion that could affect their child’s NDIS application.
- Parent and carers shared the importance of having clear guidance on what evidence is needed for an NDIS application. They felt that greater transparency would help avoid delays caused by needing to gather extra information later.
- Parents and carers want to be able to view and track their child’s information, get real-time updates, and be alerted if anything is missing. They suggested an online platform or digital hub with a live tracker for NDIS form status and tools for real-time actions and notifications.
- Parent and carers are concerned about gaps in their child’s support while a NDIS application is being assessed.
- Parents and carers suggested offering temporary help to ensure care continues during this period or ongoing help in community and mainstream services and Foundational Supports (when stood up).
Outcome of the NDIS application
- Parent and carers noted that how access decisions are communicated can either build trust or cause further distress and distrust. They stressed the importance of delivering decisions in a timely, clear, and kind way.
- Parents and carers want to be clearly informed of the next steps and support options for their child, regardless of the NDIS application outcome, so they know where to go next.
- Parent and carers said they can feel blindsided and unsupported when a NDIS access application is denied. They want clear help and help to explore other pathways and support options for their child.
What we agreed on
NDIA will put together a summary of ideas and share with important NDIA staff within the Agency to ensure future planning is based on feedback from parent and carers.
Next meeting
The next Children’s Pathway Parent and Carer Engagement Group meeting is on 22 August 2025.
Who we met with
Twenty parents and carers with a child in the scheme under the age of 9.