Submission No 130

INQUIRY INTO FOUNDATIONAL AND DISABILITY SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG PEOPLE IN NEW SOUTH WALES

Organisation: Wakehurst Stronger Supports for Neurodivergent Students Parent Working Group Date Received: 18 September 2026

Submission to the Parliamentary Inquiry into foundational and disability supports for children and young people In New South Wales

Organisation name: Wakehurst Stronger Supports for Neurodivergent Students Parent Working Group

Contact: Keryn Potts, Chair |

Date: 18 September 2026

Summary: What parents are saying

What works:

• Support based on functional need rather than diagnosis alone.
• Early intervention before challenges escalate.
• Teachers who understand neurodiversity and disability.
• Practical supports embedded in schools and communities.
• Strong collaboration between services.
• Support that continues across childhood and adolescence.
• Parents and carers being treated as partners.
• Clear navigation and coordination support.
• Timely access to specialist assessment and intervention.
• Flexible supports that adapt to changing needs.
• Support available before diagnosis where functional needs are evident.
• Consistent support through school transitions.
• Navigation support that helps families understand and access services.

What doesn’t:

• Waiting until children reach crisis point before support is available.
• Eligibility rules that exclude children with genuine functional needs.
• Children falling between NDIS, health, education and community-service eligibility frameworks
• Requiring families to repeatedly explain their child’s needs.
• Lengthy waits for assessments and specialist services.
• Recommendations that remain in reports but are not implemented.
• Reliance on referrals and assessments without accountability for outcomes.
• Support that depends on the advocacy skills, resources or persistence of parents.
• Relying on families to coordinate information between services.
• Families following every available pathway but still having no resolution of identified needs.
• Workforce capability gaps that prevent recommendations being effectively implemented.
• Support pathways that end abruptly.
• Families being expected to coordinate multiple systems themselves.
• Lack of understanding of neurodivergence within mainstream settings.
• Families having to repeatedly start again at transition points.

INTRODUCTION

We are a working group of parents and carers of neurodivergent children attending NSW schools on the northern beaches of Sydney.

Many of us came into this system assuming that if our children needed support, it would be available and relatively straightforward to access. Instead, we found ourselves navigating a complex web of education, health and disability services, often with little guidance and no clear point of responsibility.

Over time, we have become experts in referral pathways, assessment reports, funding applications, school support processes and disability advocacy. None of us set out to acquire this knowledge. We learned it because our children needed us to.

While every child’s story is different, the experiences shared across our working group reveal remarkably consistent themes. Families in our working group have experienced systems that operate in isolation, long waits for support, confusion about roles and responsibilities, and a constant need to advocate simply to secure assistance that professionals had already identified as necessary.

This submission focuses on what those experiences have taught us about what works, what doesn’t work, and what should inform the design of foundational supports in New South Wales.

Our submission is not based on theory. It is based on years of trying to ensure our children can participate in school, build relationships, learn alongside their peers and develop confidence in themselves and their future.

What school has taught us about support

School is where children spend much of their lives and is also where many support needs become visible. It is also the place where our children either experience inclusion, confidence and belonging, or exclusion, misunderstanding and anxiety.

Families in our working group have seen that when the right support is in place, neurodivergent children can thrive. We have also seen the significant impact when support is absent, delayed or poorly implemented.

Through our experiences, several important lessons have emerged.

1. Support should be based on need, not eligibility

One of our biggest frustrations is the gap between what our children clearly need and what they are eligible to receive.

Our children experience significant functional challenges. Some struggle to process language in busy classrooms. Others find it difficult to regulate emotions, manage sensory environments, organise tasks or navigate social situations. These difficulties affect their ability to learn, participate and succeed at school regardless of whether they qualify for a particular funding scheme.

We frequently find ourselves trapped between systems, with each service identifying a certain need but no single service taking responsibility for addressing it. Too often, support depends on whether a child meets the criteria for a program rather than on what they need to participate successfully in everyday life.

“The school did not want to wrap their arms around our son”

“From day 1 of kindergarten, our family was advised to look at suitable placements in a support unit. We had no understanding or knowledge of a support unit, all we knew was that the school did not want to wrap their arms around our son.”

“Despite receiving diagnoses and engaging multiple allied health professionals, we found ourselves constantly advocating to ensure recommendations were implemented and our child was welcomed and included at his local mainstream school.”

Takeaway: A diagnosis alone does not guarantee support. Foundational supports should focus on helping children participate and belong in their local communities, rather than simply identifying needs.

“The support existed, but was not accessible”

“One of the most difficult challenges was discovering that there were no autism support classes in any of the public primary schools within the Manly electorate.”

“The placement offered was up to an hour from our home and located within a

class for much older children. Accepting this placement would have separated

our son from his community, disrupted his therapies, created significant travel

burdens and further impacted our ability to maintain employment.“

Takeaway: Support is not genuinely available if it cannot realistically be accessed. Location, age appropriateness and connection to community matter.

Addressing gaps where NDIS is not available

A significant gap exists for children who have professionally-identified, ongoing disability-related functional difficulties but do not meet the threshold for individualised NDIS support. Their functional needs do not disappear because they fall outside one funding scheme.

Families in our working group have (or know of) children with genuine disability-related challenges affecting learning, communication, social participation and daily functioning who were deemed ineligible for NDIS but are unable to access equivalent support elsewhere.

Foundational supports in NSW must provide a clearly identifiable alternative pathway, with clarity about who determines need, what support is available, who funds it and which system is responsible for ensuring it is provided. The new system should specifically address the “middle gap” experienced by children whose needs are too significant to be left unsupported but who do not meet the eligibility threshold for individualised NDIS support.

A child should never be left without a pathway simply because their needs sit between existing systems.

2. Families should not have to hold the system together

Families in our working group often describe feeling as though they have become project managers for their child’s life. We organise assessments, attend appointments, communicate recommendations between professionals, follow up agreed actions and advocate when our children’s needs are misunderstood.

In practice, many families become responsible for coordinating services that should already be connected.

Families in our working group consistently describe the amount of time required simply to navigate systems that were intended to support children. Parents spoke about spending evenings researching supports, completing forms, preparing for meetings and following up on actions that had already been agreed to.

Information often needs to be transferred manually between schools, specialists and service providers, despite each professional working with the same child. This creates inequity. Children whose parents have the time, confidence and resources to advocate often have better outcomes than those whose families are already dealing with financial hardship, caring responsibilities or other barriers.

“We felt like we were managing the system”

“We prepared extensive documentation, participated in countless meetings with the school and DoE senior staff, appealed decisions, lodged complaints and engaged elected representatives, all while trying to maintain full-time employment and support our family.”

“At times, we felt as though we were managing the system rather than the system supporting us.”

Takeaway: This parent’s experience highlights an important lesson. Families can successfully navigate every available pathway and still fail to obtain an effective outcome. Meetings may occur, reports may be written, complaints may be answered and referrals may be made, yet a child’s identified need can remain unresolved. Foundational-support design therefore needs to address not only access and navigation, but escalation and accountability when existing systems do not resolve an identified need.

“When support is fragmented, the family becomes the system“

“I am regularly the person translating information between the school, speech pathologist, paediatrician and other professionals.”

“I have to explain her disability repeatedly, identify when an adjustment has not worked, follow up when support has not been provided and advocate when behaviour or difficulties associated with her disability are misunderstood.”

Takeaway: Families need a clear point of contact and stronger coordination across education, health and disability systems.

“No one tells you what is available”

“There is no obvious navigation service or single point of coordination that a parent can approach.”

“I had no clue the pathway I had to take. Wasted a lot of money on services not required in order to find what ones were helpful.”

“I am constantly researching what is available as no one tells you. Not the GP, not the paediatrician, not the school, not the specialists.”

Takeaway: Families also need a navigation function that helps them locate, understand and access available supports. No parent should have to rely on luck or persistent internet research to find support for their child.

But navigation alone is not enough. Some of our families have already obtained assessments, attended meetings, provided reports, followed referral pathways and pursued complaints processes. Their challenge was not knowing where to go, but what happened when those processes failed to resolve their child’s identified needs.

Navigation should be accompanied by an effective escalation pathway. Where a family has followed the identified pathway but their child’s need remains unresolved, there should be an appropriately independent mechanism for escalation and a clearly identified person or body responsible for ensuring an outcome.

“We paid privately because there was no alternative”

“We have spent thousands of dollars on assessments, speech therapy, occupational therapy and psychology appointments because waiting for publicly available services was not a realistic option for our child.”

“We knew support was needed, but every delay was another term at school without the help they required.”

Takeaway: Families should not have to choose between financial security and their child’s development. Families in our working group consistently reported paying privately because they felt they had no other option.

3. Assessments are only the beginning

Families in our working group have invested significant time, effort and money obtaining assessments for their children.

Receiving a diagnosis or report often provides an important explanation for the challenges a child has been experiencing. However, many families reported that the most difficult part begins after the assessment is completed. Reports can contain detailed recommendations, but families are often left to ensure those recommendations are understood and implemented.

There is a disconnect between professional recommendations and what is actually happening in the classroom.

“My child gets blamed”

“I have recently been told that my daughter is rude and rolls her eyes at the support people in class, and that she refuses help.”

“The reality is that my daughter asks for help, they don’t give it properly or are not trained, so my daughter gradually loses faith in them as well as respect.”

“The blame is always on the child.”

Takeaway: Staff understanding matters. Neurodivergent children can be easily misunderstood when the adults supporting them lack practical knowledge and training.

“A speech pathologist can identify a language-processing difficulty, but that diagnosis achieves very little educationally unless the teacher understands what it means when giving instructions, setting an assessment or deciding whether the student has understood a question.”

Takeaway: Assessments should be the starting point, not the end point. Foundational supports should help schools translate specialist recommendations into everyday practice.

This means…

We need the new system to bridge the gap between specialist assessment and everyday implementation. Professional recommendations should translate into practical support in the child’s school, home and community environments, with review of whether those strategies are actually working.

Accountability should not end when a required process has been completed. Where a child’s need remains unresolved, responsibility should remain with the relevant system until there is a clear outcome or an appropriate alternative pathway has been established.

Success should be measured by what changes for the child, not simply whether a service, referral, assessment, meeting, plan or process was provided.

The reports sat in a drawer“ “We had the reports. We had recommendations. We had diagnoses.

“What we didn’t have was any confidence that the recommendations would be implemented consistently.”

Takeaway: Success should not be measured by how many assessments are completed. Success should be measured by whether children experience meaningful support in their daily lives.

What good support looks like

Our families have faced many challenges, but we have also experienced examples of support that have made a genuine difference.

The strongest examples are not necessarily the most expensive or specialised. In many cases, they involve teachers, support staff or therapists who understand neurodivergence, listen to families and worked collaboratively with other carers and professionals in our children’s lives to solve problems.

Each of us know the profound impact a single knowledgeable and supportive teacher can have on a child’s experience of school.

“One teacher changed everything”

“For the first time, we had a teacher who genuinely understood our child. Adjustments were simple, communication was open and our child felt safe.”

“The difference in confidence, participation and wellbeing was immediate.”

Takeaway: The biggest difference is often not a new program or funding stream. It is having adults who understand neurodivergence and know how to respond appropriately.

A word about professional accountability

We know that there are challenges in system design due to resource constraints. However, the design of foundational supports must also include individual professional accountability.

As in any profession, individual practice can sometimes contribute to a breakdown in support. We can tell you many stories about where professional recommendations were not implemented, disability-related needs were repeatedly misunderstood and an individual worker’s approach contributed to poor outcomes. In those cases, there needed to be mechanisms for this to be identified, reviewed and addressed.

Accountability should focus on improving practice and outcomes rather than protecting any part of the system from appropriate scrutiny.

The emotional impact on children and families

One aspect of disability support that is often overlooked is the emotional impact on families of having to navigate different systems.

Our families have watched their confident and enthusiastic children gradually lose faith in themselves after repeated experiences of misunderstanding, exclusion or unsupported needs. Some of our children knew they were struggling but could not explain why and could see other students succeeding more easily and so assumed that they were somehow at fault.

For some kids this has led to significant, impairing anxiety and for others it has meant school avoidance, behavioural distress, and of course a loss of the confidence they need to transition successfully to adulthood.

Our parents are often exhausted, frustrated and worried. We are constantly questioning whether we have done enough, pursued enough supports or have advocated strongly enough.

“Support arrived only after crisis”

“Due to the arrogance of the teachers at my daughter’s previous primary school, thinking they knew better, my child wanted to kill herself as the solution to her pain.”

“If they had had the correct supports at primary school, it wouldn’t have escalated as it did.”

Takeaway: Support should not become available only after problems escalate to crisis point. Foundational supports should intervene early and prevent avoidable harm.

“Our whole family is affected”

“Our family’s routines, employment decisions and financial circumstances have all been shaped by the effort required to secure support.”

“Appointments, meetings, assessments and advocacy became part of everyday life.”

Takeaway: Support needs affect entire families, not just individual children. When systems are difficult to navigate, the impacts extend to employment, finances, siblings and family wellbeing.

Support needs continue throughout childhood

Our families strongly support the importance of early intervention. However, our experience is that support needs do not disappear as children get older.

“Every transition means you start again“ “Each time our child changed schools, teachers or support staff, it felt like we had to start again.”

“We found ourselves retelling the same story, providing the same reports and re- establishing supports that had already been identified as necessary.”

Takeaway: For many children, challenges become more pronounced as academic expectations increase and social environments become more complex. Early intervention should mean intervening early when a need emerges. This should not mean limiting meaningful intervention to just early childhood.

Transitions have caused many of us a lot of anxiety. Moving into high school, navigating multiple teachers and increasing independence frequently exposed challenges that were previously manageable.

As children enter their teenage years, demands relating to language processing, executive functioning, organisation, social interaction, independence and self-management increase substantially. A child may therefore require more support when they are 12 years old than they did at eight, not less.

Foundational supports must be responsive to changing functional demands and provide a clear service to 12-18 year olds.

“My child cannot wait two years“

“At one point, my daughter’s previous speech pathologist recommended that we seek assessment from a psychiatrist.”

“Some services we contacted had waiting lists of approximately two years.”

“A referral or recommendation on paper is of limited value if the relevant professional workforce does not have the capacity to see the child within a meaningful timeframe.”

Takeaway: Children need timely access to support. Workforce shortages can significantly reduce the effectiveness of otherwise well-designed services.

Workforce planning should consider capability as well as capacity. Increasing workforce numbers will not achieve the intended outcomes unless professionals have the right skills and neurodevelopmental understanding required to identify and respond effectively to children’s functional needs.

This applies across all health, allied health, education and community services that we rely on to help our kids.

“Every transition means you start again” “Each time our child changed schools, teachers or support staff, it felt like we had to start again.”

“We found ourselves retelling the same story, providing the same reports and re- establishing supports that had already been identified as necessary.”

Takeaway: Families should not have to continually re-prove their child’s needs. Support should move with the child and remain consistent through transitions.

“A child does not stop needing disability support because they turn nine, enter high school or fall outside the eligibility criteria of a particular program. Without an accessible pathway for those children, families are left trying to fill the gap themselves.”

Takeaway: Foundational supports should continue throughout childhood and adolescence and support children through major life transitions.

What we think foundational supports should look like

When we reflect on our collective experiences, the answer is not more complexity.

We want supports that are easy to find, easy to access and available when they are needed. We want a system that focuses on children and families rather than administrative boundaries, funding streams or eligibility categories.

Our experiences have led us to conclude that effective foundational supports should:

• be available based on functional need, not just diagnosis;
• be accessible while children are waiting for assessments or specialist appointments;
• be available close to where children live, learn and participate;
• support children before difficulties escalate into crisis;
• include practical navigation support for families;
• follow children through key transition points;
• improve communication between education, health and disability services;
• help schools implement recommendations in practice;
• support emotional wellbeing, belonging and participation;
• be responsive to changing needs across childhood and adolescence; and
• recognise families as partners in supporting children.

The strongest message from our parents is that children do not experience life through separate government systems. They simply experience whether they are understood, included and supported.

The cost of delayed or insufficient support

For most of our families, support eventually arrived only after substantial stress, conflict or deterioration in a child’s wellbeing. Too often, services respond once difficulties become significant rather than when early signs emerge.

When support was delayed:

• children disengaged from school
• anxiety and mental health concerns escalated
• families experienced increased stress and financial pressure
• trust between families and services broke down
• more intensive interventions were eventually required.

Our experiences strongly suggest that early, coordinated and accessible support is not only better for children and families, it is also a more effective and sustainable approach for government.

CONCLUSION

Families are not asking for an advantage and we are not asking for every challenge to be solved. We are asking for children to have equitable access to the support they need to participate, learn and belong.

There can be remarkable outcomes when supports are coordinated, when schools understand neurodivergence and when families are treated as genuine partners. We have also seen the consequences when children fall through the gaps between systems. The difference is often not how severe the need, but whether the right support can be accessed at the right time.

Over time, our families have learned far more about disability, education and support systems than we ever expected to know. In our working group, the same questions keep being asked: What happens to a child with genuine disability-related functional needs who does not qualify for NDIS? Which system becomes responsible? Who determines what support they receive? Where can families turn when they have followed every pathway and the need remains unresolved? And who is accountable for ensuring an outcome for the child?

We encourage the Committee to ensure that foundational supports address these questions directly through clear pathways, defined responsibilities, effective escalation mechanisms and accountability for outcomes. The measure of success should not be whether a process occurred, it should be whether our children’s lives are improved as a result.

OUR RECOMMENDATIONS

We offer the following recommendations from our lived experience for the Committee’s consideration.

1. Families need help navigating the system

Navigation support should be recognised as a foundational support in its own right. Every family should have access to a clear and accessible point of contact who can provide information, help families understand pathways and eligibility requirements, connect education, health and disability services, and support families through major transitions. Navigation support should also include escalation pathways for situations where identified needs remain unresolved despite families following recommended processes.

2. Support should follow the child

Foundational supports should be designed so that information, planning and agreed adjustments move with the child. Support should not depend on a parent’s ability to repeatedly explain the same needs and recommendations.

3. Bridge the gap between assessment and action

Foundational supports should help schools understand specialist recommendations, implement practical classroom adjustments, monitor whether supports are working and access specialist advice when needed. The measure of success should not be how many reports are produced. It should be whether children experience meaningful support in their everyday lives.

4. Children should not need a diagnosis before they receive help

Support should be based on actual need rather than a formal diagnosis. Children with professionally-identified functional difficulties should have access to support regardless of whether they meet eligibility thresholds for individualised NDIS funding. Foundational supports should provide a clear pathway for children whose needs fall between existing service systems. Children should also be able to access practical assistance while waiting for assessments, specialists or diagnostic processes.

5. We need clear accountability for outcomes

Where multiple systems are involved, there should be an identified person responsible for coordination and review, with a clear allocation of responsibility for actions. Accountability should be linked to outcomes for children, not simply completion of administrative processes.Parents should remain partners in decision-making without becoming the de facto case manager for otherwise disconnected services.

6. Foundational Supports should promote wellbeing, not just participation

Educational outcomes are important, but they are not the only outcomes that matter. Foundational supports should explicitly focus on building:

• belonging
• social connection
• confidence
• emotional wellbeing
• participation
• mental health.