Submission for Inquiry into the Thriving Kids Initiative 24/09/2025
24/09/2025
Submission for Inquiry into the Thriving Kids Initiative
To whom it may concern,
Purpose: The purpose of this submission is to outline concerns about some of the proposed features, inclusions, and exclusions of the new Thriving Kids initiative, and suggested action that could address these concerns. This letter includes background information, a specific client population that is at risk with the proposed changes, and a case study of a real client. Please note, all names and identifying information has been changed in the case studies to protect client confidentiality.
Background/Context: This letter is written from the perspective of a speech pathologist in Melbourne working within the private practice setting, with a paediatric caseload. The main client group for the clinic is young children (infants – early/mid primary school), and specifically children with language or speech sound difficulties, or children who require alternative methods of communication other than spoken language (e.g. communication books or devices).
Many children currently receiving services at this clinic have access to NDIS funding at present, and I have seen first hand how this has been genuinely life changing for the children and their families. These clients, many of whom have very complex communication needs, often with other co-occurring diagnoses, require very individualised services delivered over extended periods of time in 1:1 formats. Rarely do you see two children responding in exactly the same way to the exact same style of intervention without some additional adaptions being provided to suit their specific learning needs and presentation. Whilst some of these clients will go on to receive funding under the new changes to NDIS, there are many that would miss out based on the proposed inclusion/exclusion criteria and implementation of Thriving Kids.
Without access to the NDIS services that many of these clients have received, it would have been financially impossible for them to participate in the services that they desperately need to improve their communication skills. It has also been critical that these children have had access to NDIS funding from an early age, as it places them in the best position possible in relation to communication skills for starting formal education as five or six year olds. With the proposed changes to the NDIS and implementation of the Thriving Kids program, many of these current clients will miss out on funding in future, and many additional children will never receive funding and 1:1 support they need in the first place. This places them at a significant risk of starting formal education significantly behind peers, and has significant repercussions on all aspects of their functioning and participation in many contexts (e.g. social relationships, literacy, education, cognition) and can go on to also then influence their adult life.
One specific client population that will be dramatically impacted by the proposed changes to NDIS and Thrive are children with a diagnosis of Childhood Apraxia of Speech (CAS). Unlike some other speech sound diagnoses, CAS is a lifelong disorder where a person experiences challenges with the programming and planning of all the intricate movements required to produce speech. There is no physical damage to the muscles or nerves themselves, rather the difficulty lay in getting messages
from the brain to relevant speech muscles and structures in the right order, at the right time, and with the right amount of force. It is critical to note that CAS does not naturally resolve, and the research has been clear that CAS requires very particular evidence based treatments with intensive therapy of at least two sessions per week with ideally four sessions per week to accumulate twelve sessions in a block, repeating the block for an unspecified number of repetitions (Maas et al., 2014; McCabe et al., 2024; Murray et al., 2015). From clinical experience, children with CAS require many years of this therapy, with ongoing speech difficulties to varying severities expected beyond childhood into adolescence and adulthood.
For many children with CAS, the requirement for frequent therapy places significant financial burden on their family, and places children at risk of missing out on this therapy. The research has also shown that therapy once per week is ineffective (Navasivayam et al., 2015; Thomas et al., 2023). Financial barriers to accessing services increases children’s risk of going on to live with the long term impacts of a sever motor speech disorder. There is no research that suggests CAS intervention is effective via group therapy, and the limited research that looks at intervention delivered by anyone other than speech pathologists does not support this approach (McCabe et al., 2024). As such, a group based approach/whole cohort, or additional training for childcare educators, kindergarten educators, maternal child health nurses, or other professionals will not adequately address those difficulties for children with CAS. If children are unable to receive timely intervention for CAS before starting school, they are significantly more likely to experience barriers to full participation in academic and social contexts due to their speech sound difficulties. Children with persistent speech sound disorder are also more likely than peers to experience difficulties with acquiring literacy skills (Wren et al., 2021) which places them at risk of falling behind in this domain too.
It is also important to note that the diagnostic process for CAS can take time, and there is not one assessment that definitively proves the diagnosis by itself. Rather, CAS diagnoses take time and careful consideration of research based diagnostic criteria lists, interviews with primary caregivers about the child’s early development, and several dynamic assessments. As a result of this, an official CAS diagnosis is not always possibly in the first few years of life, however access to intervention during this time is essential. Whilst the child may have severe speech difficulties (producing the sounds for words) and while they are developing skills that would allow them to participate in formal assessment (e.g. being able to attend to assessment material), their language may be developing typically (e.g. vocabulary, understanding of others’ speech) and they need access to strategies such as alternative and augmentative communication (AAC) systems as soon as possible to provide them with ways to support their language while they are unable to communicate with speech.
Case Study (identifying information has all been changed) John is a 5 year old boy who has been accessing speech pathology services since he was 3;3. John first attended speech pathology sessions as his parents had concerns over his small vocabulary, and significant difficulties understanding the few words that he did say. When John was first assessed, he spoke in short 3-4 word sentences with many words entirely unintelligible. John was unable to share his ideas or thoughts with others, despite evidence that he had age appropriate understanding of language and the world around him. John was unable to say the names of anyone in his immediate family, and even those closest to him experienced frequent difficulties understanding what he was telling them. John was relying on the use of a small inventory of gestures (e.g. pointing) to try to assist his communication, and this was insufficient to meet his needs.
John received weekly therapy for approximately 12 months whilst diagnoses were being explored, and intervention for his speech sound system began. John was officially diagnosed with Childhood Apraxia of Speech in 2024 and was fortunate enough to receive NDIS funding through the early intervention scheme at a similar time due to the significant impact of his CAS on multiple areas of functioning, and co-occurring gross and fine motor skill delays. In 2025, John has been able to receive therapy in blocks with two sessions per week as per the research highlighting the necessity of frequent therapy in block models (McCabe et al., 2024).
Due to the intervention that John has been able to access from a young age, he now communicates using spoken language in long sentences to talk with adults, teachers, and peers. John can now articulate many new sounds and say important words such as family member’s names, his own name, his age. John attends a mainstream school and can participate in classroom environments and discussions and has formed new friendships. Despite all this growth, John still has many speech difficulties and still has years of therapy ahead of him. With the proposed changes to the NDIS, John is likely to lose access to funding and is at risk of no longer being able to access speech pathology intervention, widening the gap further each year between the expected communication skills for children his age, and John’s communication skills. By contrast, with continued access to funded therapy and individualised supports John will be able to continue receiving speech pathology services and his communication skills would be expected to continue to develop and improve.
Whilst this story belongs to John, the key themes of his story are not unique and I have seen them repeated numerous times in the lives and experiences of children with CAS. Two further case examples (deidentified) that highlight this are shown below:
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Amanda, a four year old with CAS who was unable to be understood by anyone (grandparents, friends, siblings, parents) before starting speech pathology sessions. Amanda is currently learning to say her name, and her clarity of speech and language skills have already dramatically increased already with access to NDIS funding since 2024, and frequent intervention since this time.
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Connor, a five year old with CAS who, as a toddler, had such significant motor speech difficulties that he was unable to produce any speech sounds. Connor benefited enormously from early access to AAC including a Pragmatically Organised Dynamic Display (PODD) book that was funded through NDIS, and was suspected to have age appropriate language as a toddler despite the fact he was unable to communicate any words with spoken language. Access to the PODD allowed Connor to have a way to express his messages at this time, and to continue to develop his vocabulary whilst he was unable to use spoken words to communication. Connor now has come so far with frequent therapy, that his PODD book is rarely required, and he is able to talk in long sentences that are generally able to be understood by familiar listeners. Without access to early intervention and individualised supports, John, Connor, and Amanda would be unable to communicate with those around them and at significantly greater risk of starting education behind their peers and never catching up. They would also be likely to experience their lives being constantly being misunderstood by those around them. Children with persistent speech sound disorders such as CAS are at increased risks of negative impacts to their social and emotional wellbeing, as well as difficulties with learning and literacy skill development (Wren et al., 2021, 2023)
Proposed action: I request that in creating the new Thriving Kids program, there be pathways for children to still receive one to one individualised support with some degree of funding from allied health including speech pathology in instances where they may not qualify for NDIS and where their diagnosis are too complex to be addressed by other mainstream and community supports such as group therapy or education and training for educational staff. I ask too that communication and speech pathology be integrated into the Thriving Kids approach. Whilst conditions such as CAS cannot be treated by, for example, parents, teachers, teacher aids, it would be extremely beneficial for parents and education staff to receive more training and information about red flags for communication disorders and increased knowledge about milestones and when to seek speech pathology services.
I also request that it be considered whether Childhood Apraxia of Speech (CAS) can be added to the list of funded disabilities for NDIS. CAS is a lifelong, permanent, diagnosis that has significant repercussions on all aspects of life, particularly if left untreated (e.g. communication, social relations and wellbeing, participation in educational settings and employment). CAS will not resolve by itself, and it demands individualised and frequent speech pathology intervention sessions. Inclusion of this diagnosis under the NDIS would be life changing for many families and children. This is especially the case when considering the very intensive and frequent nature of interventions evidence has shown are required for successful and efficient progress (McCabe et al., 2024), and the financial barriers this creates for many to access services.
Thank you for taking the time to review this letter. For an up to date summary of the research and literature about CAS, please see the reference below by McCabe et al., 2024.
References
Maas, E., Gildersleeve‐Neumann, C. E., Jakielski, K. J., & Stoeckel, R. (2014). Motor‐based
intervention protocols in treatment of childhood apraxia of speech (CAS). Current
Developmental Disorders Reports, 1 197.
McCabe, P., Murray, E., Thomas, D. (2024). Evidence Summary – Childhood Apraxia of Speech
January 2024. The University of Sydney. https://rest.sydney.edu.au/wp
content/uploads/2024/01/CAS_evidence_brief_2024.pdf
Murray, E., McCabe, P. & Ballard, K.J. (2015). A randomized control trial of treatments for childhood
apraxia of speech. Journal of Speech, Language, and Hearing Research: 58, (3) 669‐686
Namasivayam, A. K., Pukonen, M., Goshulak, D., Hard, J., Rudzicz, F& … Lieshout, P. (2015).
Treatment intensity and childhood apraxia of speech. International Journal of Language and
Communication Disorders: 50(4), 529‐546.
Thomas, D., Murray, E., Williamson, E., & McCabe, P. (2023). Weekly treatment for childhood
apraxia of speech with Rapid Syllable Transition Treatment: A single‐case experimental
design study. Journal of Speech, Language, and Hearing Research: 1‐22
Wren, Y., Pagnamenta, E., Orchard, F., Peters, T. J., Emond, A., Northstone, K., Miller, L. L., &
Roulstone, S. (2023). Social, emotional and behavioural difficulties associated with persistent
speech disorder in children: A prospective population study. JCPP Advances.
https://doi.org/10.1002/JCV2.12126
Wren, Y., Pagnamenta, E., Peters, T. J., Emond, A., Northstone, K., Miller, L. L., Roulstone, S. (2021).
Educational outcomes associated with persistent speech disorder. International Journal of
Language and Communication Disorders, 56(2), 299-312. https://doi.org/10.1111/1460
6984.12599