Quote from an attendee: “Supports should be delivered where my child lives, learns and plays.”
What we talked about
The NDIA shared a summary of what the group thought were the most and least important ideas to help improve the NDIS for children under 9. These ideas were voted on during the last session.
The group were introduced to the Lead Practitioner role – an idea proposed following the NDIS Review . NDIA explained that a Lead Practitioner could be one way to deliver best practice to coordinate a team around a child, identify needs, and help families build self-advocacy skills.
In small groups, members explored ways the NDIA can better support families so they receive best practice early intervention support for their children. The discussion focused on 4 key areas:
- Child and family-centred supports
- Participant and community-focused supports
- Collaborative teamwork
- Outcomes-focused supports.
What we heard
General feedback on the Lead Practitioner role
- Parents and carers are unclear about how the Lead Practitioner differs from roles like support coordinators, navigators and key workers, and would like clearer definitions to reduce confusion or overlap.
- Parents and carers want the choice to opt in or out of having a Lead Practitioner. Some families prefer to manage independently while others might need more support.
- Parents and carers stressed the importance of the Lead Practitioner building trust and strong relationships with families, while understanding the child’s needs, cultural background and family dynamics.
- Parents and carers highlighted the need for Lead Practitioners to have lived experience, empathy and resilience, especially when supporting families with complex needs or limited informal supports.
- Parents and carers expressed they can often feel exhausted and overwhelmed when managing multiple providers, re-telling their stories and navigating systems. The Lead Practitioner could help to ease the load by acting as a single point of contact, advocating across multiple systems, and helping with paperwork, referrals and goal setting.
- Parents and carers valued the idea of choosing their Lead Practitioner rather than being assigned one. Suggestions included having bios or profiles to help families make informed choices about who they engage with.
- Parents and carers suggested the Lead Practitioner should be involved from the start – helping families choose appropriate providers and develop plans – rather than being introduced after initial supports are in place.
- There were mixed views on whether the Lead Practitioner should provide therapy or just focus on coordinating support. Parents and carers highlighted that in rural areas, it might be necessary for the role to cover both as services can be harder to access.
- Parents and carers expressed concern about the feasibility of implementing the Lead Practitioner model due to severe shortages in allied health professionals and high turnover.
Child and Family-Centred Supports
- Supports should be tailored to each child’s individual needs, strengths and family context.
- Lead Practitioners should understand the emotional toll often experienced by parents and carers and offer compassionate, trauma-informed support.
- Parents and carers value being able to choose their Lead Practitioner and want transparency in qualifications and fit.
- Supports should represent a whole-of-family approach and consider family dynamics and needs.
Participant and Community-Focused Supports
- Therapy and support should be delivered where the child lives, learns and plays (e.g., home, school, community).
- Parents and carers would like more support to understand their rights and to better advocate for their child to be included in education and community settings.
- Schools often restrict provider access which leads to barriers to support provision.
- Access to community-based services is limited for families in rural and remote areas.
Collaborative Teamwork
- Parents and carers want a single point of contact who knows their story and can help coordinate their child’s care.
- There is a need for someone to ensure therapists are not duplicating efforts and are working towards shared goals.
- Lead Practitioners should have pre-existing relationships with the community and knowledge of their local area.
Outcomes-Focused Supports
- Parents and carers like goals that are flexible and show their child’s progress over time, instead of goals that are strict and only have a yes-or-no outcome.
- Parents and carers often hesitate to report success due to fear of losing funding or receiving reduced support.
- Lead Practitioners should help to break down goals into achievable steps and adjust them over time.
What we agreed on
- The NDIA will keep working with other teams in the Agency to see which ideas are possible and which ones could work well in the long run. This will be used to inform on-going and future co-design work.
Next meeting
The next Children’s Pathway Parent and Carer Engagement Group meeting is on 24 October 2025.
Who we met with
Twelve parents and carers with a child in the scheme under the age of 9.