2nd October 2025
Katherine Fotheringham
Phone:
Submission to the Inquiry Into the Thriving Kids Initiative
To the Committee Members,
I am grateful for the opportunity to contribute to this inquiry. I commend the Australian Government’s recognition of the vital role mainstream support services play in identifying and supporting children with neurodevelopmental delays and disorders. This acknowledgment highlights the need for a comprehensive approach that effectively complements individualized NDIS services. As a mother of three, one of whom has an Autism diagnosis, and with a professional background in Nursing, I offer these insights.
Reflections on the Terms of Reference A critical first step is empowering parents with accessible tools for identifying early developmental delays. A simple, stage-appropriate screening tool providing immediate feedback and clear next steps would enable earlier intervention and reduce parental uncertainty.
While some programs are effective, significant gaps persist. Community and mainstream services, including maternal and child health, primary care, allied health, and schools, require enhanced education, connectivity, and resources. Navigating these systems currently presents an undue burden for families.
Developmental delays and developmental disorders are distinct, and their terms should not be used interchangeably. Developmental delays often respond well to timely and appropriate interventions and can typically be resolved. Autism Spectrum Disorder, on the other hand, is recognised as a neurodevelopmental disorder, which is permanent, persisting throughout an individual’s life.
Characterising support needs as “mild to moderate” or “levels 1 to 3” oversimplifies the complex neurosensory profiles of children and their environmental interactions. While community-based approaches can initiate identification, they often lack the specialised expertise for intricate, individual needs. A shift towards neuroaffirming practices, celebrating strengths rather than enforcing conformity to unsuitable environments, is essential.
Equity demands careful consideration, particularly for First Nations and culturally and linguistically diverse children who face additional systemic barriers. Ensuring equitable opportunities for all children, irrespective of background, is paramount.
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Supporting the workforce is a critical priority. Teachers, allied health professionals, and community workers require appropriate training and resources to effectively identify and intervene within their defined scope of practice. These foundational supports are essential for program efficacy.
Finally, integrating international best practices offers invaluable insights. Exploring effective overseas systems and ensuring seamless transitions between services are crucial to providing consistent, accessible support for children across their developmental stages. One such example is the Centres for Disease Control and Prevention’s (CDC) LearntheSigns.ActEarly(LTSAE) program. This program has been developed with the aim of enhancing the early detection of developmental delays and disabilities, including autism. It involves more explicit questioning about what most children are achieving by a certain age. The NSW Health Department has integrated this program into their ‘My Personal Health Book’ that each family receives when they have a new baby.
Our Experience
Our family’s journey highlights challenges many others face, so I would like to share a bit of it with you. My 7 year old son is energetic and gregarious, with an insatiable appetite for learning. However, his presentation often masks an internal reality that requires significant effort to maintain. The difference between his social demeanour and his state when public interaction pressure is removed is worlds apart.
Every word and sensory input from my son’s day is replayed in his mind, fueling a cycle of worry, catastrophizing, and self-doubt. In late 2024, he was formally diagnosed with Autism Spectrum Disorder (Level 2), ADHD (combined type), and Anxiety. Since starting school in 2024, he has faced significant challenges in the school environment, leading to a substantial amount of missed time. The demands of school have taken a toll on both his physical and mental health, continuing a trend of difficulties that began during his preschool years.
We are fortunate to have a strong healthcare team, including a Paediatrician, GP, Psychologist, Neuropsychologist, and Occupational Therapist, who all agree that my son requires significant support in nearly every aspect of his life. NDIS funding has been instrumental in providing these supports, and we are deeply grateful for it. However, when it comes to support within the school system, we have encountered significant barriers.
NDIS funding cannot be used for school-based supports, leaving us to self-fund sensory tools and other resources to aid him in the classroom, efforts that, unfortunately, have not been successful. It is perplexing that a child assessed as requiring substantial NDIS-funded supports is simultaneously excluded from receiving adequate assistance through the Disability Inclusion Program (DIP). Despite submitting professional assessments and detailed recommendations for adjustments to make the school environment more suitable, we encountered resistance due to resourcing restrictions. As a result, he was unable to attend school for much of the year, and when he did, he
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struggled to manage through the day. This disconnect between the NDIS and Education Departments has significant implications.
While the NDIS assessment considers the whole child and the family dynamic, the DIP focuses narrowly on required school-based adjustments, without accounting for the broader impact on the child outside of school. In our experience, the lack of alignment between these systems has set back his progress. The constant challenges at school have undermined the effectiveness of therapies, as we are often left addressing setbacks from his time in the classroom.
Ultimately, the lack of adequate school adjustments left us with no choice but to withdraw him during Term three this year to focus on his recovery. This includes addressing related health issues, with an upcoming surgical procedure forming part of his care plan. Going forward, he will be formally assessed for learning disorders, given his ongoing challenges with literacy. When he is deemed ready, we will begin transitioning him to a school that we hope can better meet his needs.
The ripple effects of these challenges have been significant for our family. My husband and two other children often bear the brunt of my son’s impulsive outbursts, and while the injuries they have sustained have been minor, the emotional toll has been substantial. My own mental health has suffered, as has our marriage. As a former Neonatal Intensive Care and Emergency Retrieval Nurse, I have been unable to return to the career I worked so hard to build, given the unpredictability of my son’s needs. Our other children have also been affected in numerous ways. The NDIS funding and the access to services it provides have been a lifeline for us in navigating these challenges.
Moving forward, there must be a greater focus on creating environments that truly support the unique needs of neurodivergent children. Neuroaffirming practices that celebrate their strengths, rather than forcing them to adapt to environments that can be unsuitable or even harmful, are essential for their success and well-being. Addressing these systemic gaps could make a profound difference not just for families like ours, but for the broader community and economy.
What Needs To Change
Even with tremendous support for our son from family who are exceptionally experienced educators, as well as our healthcare team, our experience has been incredibly troubling and, at times, traumatic. This underscores the urgent need for systemic change.
Upskilling and Educating Stakeholders
Everyone involved in a child’s care, including teachers, healthcare providers, and community workers, needs to be on the same page. They require ongoing training and accessible resources to effectively identify and support children with developmental delays. Crucially, there must be clearly defined parameters that trigger referral to the appropriate services. Without this foundational understanding and clear guidance, families are left to navigate complex systems on their own, a situation that is neither sustainable nor equitable.
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Clear Pathways for Families
Families often feel lost when trying to identify developmental delays or while seeking through to receiving a diagnosis and beyond. While early recognition and intervention are critical, many currently experience isolation and overwhelm during this process. To provide more timely identification and support, a digital developmental questionnaire, based on a program like the LTSAE, adapted for Australian families, could be invaluable. Administered at several key developmental stages, such a tool would maximise the potential to detect emerging delays. To make it truly parent friendly, it should include clear examples of developmental milestones through both written and audiovisual content, helping parents easily understand what to look for. Crucially, if milestones are not met, directing parents to local, relevant health professionals complete with contact details would significantly reduce barriers to seeking help. We recognise that early intervention is paramount, as delays can profoundly affect not only the child, but also their family and support network.
Consistency in Language and Resources Building on my previous remarks about the characterisation of support needs, a persistent and frustrating challenge stems from the inconsistent language used by government agencies. For instance, while the DSM-5-TR distinctly classifies Autism Spectrum Disorder into three levels of support need, families frequently encounter resources that employ unrelated terms, such as “mild to moderate developmental delay.” This linguistic disconnect generates considerable confusion, even for my husband and me, both of whom are trained healthcare professionals. Standardising this terminology and the accompanying resources across all agencies would profoundly enhance clarity for families.
Final Thoughts
The Thriving Kids Initiative presents a crucial opportunity to address these challenges and have a profound, positive impact on children and families. By prioritising early identification, fostering better service coordination, and ensuring clear, consistent communication, we can build a system that genuinely supports every child’s potential. This Initiative, coupled with the NDIS’ ongoing commitment, holds the promise of significant, long-term change for our children. Once again, thank you for this opportunity, and I look forward to hearing the outcomes of this inquiry.
Warmly,
Kat Fotheringham
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