10th October 2025
Thriving Kids Initiative Inquiry
c/o Standing Committee on Health, Aged Care and Disability
PO Box 6021
Canberra ACT 2601
Australia
By email: Health.Reps@aph,gov.au
Re: Submission to the Inquiry into the Thriving Kids initiative
Dear Review Co-chairs,
I appreciate the opportunity to provide the views of the Wentworth community for the inquiry into the Thriving Kids initiative. This submission is informed by an online community survey that I recently conducted of over 110 parents, carers, educators, health professionals and other community members. It also incorporates feedback provided by constituents and stakeholders to myself and my office over the past three years.
Summary of key findings
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The majority of parents or carers (67%) who responded to the survey found it difficult to get a diagnosis for developmental delay or autism. Furthermore, over three quarters of parents experienced delays in accessing diagnostic assessments.
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Only 12% of parents found it easy to access support services and interventions.
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The most commonly cited barriers to diagnosis and support was waiting times at all stages of the process, including waiting for NDIS plans to be approved. The prohibitively high financial cost of services was another frequently cited barrier.
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Once NDIS funding had been approved and support secured, parents reported slightly more positive feelings regarding the quality of services with 26% of parents feeling that services had “poorly” met their needs.
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When asked for recommendations on the current system, several key themes emerged including: a centralised directory of local services, better integration of support within our education system, more training for educators on developmental delay and autism, means-testing and stronger governance to reduce over-charging.
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The responses from those who weren’t parents or carers highlights a significant challenge ahead of the government in reforming the image of the NDIS. Many wrote of the high cost of the NDIS on the budget and a feeling that children are currently being overdiagnosed.
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Parents were open to change and acknowledged room for refinement in the existing system, however the majority felt that they had not been adequately informed and assumed the proposed program would result in funding cuts.
Results from the online survey Over 110 parents, carers, educators and health professionals responded to my survey “Tell me your thoughts on the NDIS”, 76% of which currently reside in Wentworth.1 The survey was targeted at parents, carers, educators and health professionals, and asked questions about their experiences with the existing NDIS system and how it supports kids with mild to moderate developmental delay and autism.
The largest group (44%) to respond to the survey were parents and carers with a child with developmental delay or autism. Of these parents, 77% said their child had “mild to moderate” developmental delay or autism, 19% said their diagnosis did not fit the categorisation and 4% said they were unsure. It is noteworthy that some of the parents who were in the two latter categories were confused about the definition of “mild or moderate” delay.
Of the parents with a child with mild to moderate developmental delay or autism, 78% were on an NDIS plan, with packages ranging from $11,000 p.a. to $200,000 p.a. The median package size was $30,000 p.a.
For the 12% who weren’t on an NDIS plan, the main deterrents shared by respondents were feeling that the process would be complicated and time-consuming, the uncertainty of whether their applications would even be successful and being stuck on waitlists for diagnostic assessments.
Feedback on the diagnosis process
The majority of parents who responded to the survey found it difficult to get a diagnosis for their child. When asked how easy it was to access early identification, just 12% of respondents said it was easy (with only 2% finding it very easy) while 67% found it difficult.
Further, over three-quarters of parents who responded said they experienced delays in accessing diagnostic assessments.
Table 1: How easy has it been to access early Table 2: Have you or families you work with identification for children with mild to moderate experienced delays in accessing diagnostic developmental delay or autism in your area? assessments?
Rating Response (of 50 parents) Answer Response (of 50 parents)
Very easy 2% No 10%
Somewhat easy 10% Not sure 8%
Neutral 22% Yes, occasionally 38%
Somewhat difficult 47% Yes, frequently 38%
Very difficult 20% Not applicable 6%
1 These results are correct as of the morning of the 7th October 2025, when the survey was closed.
Feedback on support services
When asked how easy it was to access support services and interventions, just 12% said it was easy.
Table 3: How easy has it been to access support services for children with mild to moderate developmental delay or autism in your area?
Rating Response (of 50 parents) Very difficult 24% Somewhat difficult 42% Neutral 22% Somewhat easy 4% Very easy 8% Very difficult 24%
Barriers to diagnosis and support
To better understand the difficulties and delays associated both with diagnosis and support, we asked respondents to share what barriers they experienced.
The most cited barrier was wait times at all stages – from diagnosis, to waiting for NDIS reviews to waiting lists for support services.
Parents wrote of waitlists for diagnostic assessments ranging from 6 months to over a year, while some mentioned that they encountered local services which were no longer taking on new patients. From there, parents mentioned waiting months for NDIS plans to be approved – and being unable to financially afford support in the meantime.
Once plans and funding were secured, many parents encountered long waiting lists for local support services. It is important to emphasise just how prevalent this experience is.
The sentiment that all providers have extremely long waitlists also seems to have itself become a barrier to accessing support, with one parent writing:
“The first psychological practice we contacted had a year-long waiting list. We then phoned around other practices and found one with just a two week wait. With so much discussion of year-long waiting lists, one trap that people face is the feeling that it is not worth phoning around.”
The next most common barrier to accessing support services was the upfront cost of the diagnostic assessment required for NDIS funding.
Even parents who acknowledged they had the financial means to go through the private healthcare system made note that they had watched friends navigating the public system with much more difficulty.
In addition to the financial cost of accessing diagnosis, the cost of support services was also a barrier – particularly when there were delays in the plan reviews. As one parent wrote:
“My daughter’s NDIS review decision this year took 4 months to reach an outcome and we’d run out of funds 7 months before.”
Beyond the financial cost and waitlist, one barrier repeated by many parents was the difficulty of understanding what services were available locally and funded by their child’s NDIS plan. One parent wrote:
“Knowing what supports are funded and finding them locally is difficult. Parents need GPs and Paediatricians with good networks.”
It is important to highlight that many parents who responded to the survey spoke of multiple barriers, that combined to make the process of accessing diagnostics and support overwhelming and difficult. One parent described:
“Barriers are complicated and overlapping. Financial, waitlists, finding the supports that will work for each child, convincing professionals.”
Moreover, many of the barriers experienced by parents were also echoed by the GPs and allied health professionals who responded to the survey. They acknowledged the waitlists and high costs that families had to deal with, with multiple respondents describing that the system felt “clogged”.
Quality of services
While the majority of parents had negative experiences in accessing diagnostic and support services, feedback regarding the quality of services was slightly more positive with only 26% of parents feeling services had “poorly” met the needs of their family.
Table 4: How well have services met the needs of children with mild to moderate support needs in your community?
Rating Response (of 50 parents) Very poorly 11% Poorly 16% Neutral 26% Well 20% Very well 12% N/A 13%
As one parent noted:
“Once services are found and in place, it’s been great, but it took three to four years to get supports in place that I am happy with.”
This was an experience repeated by many parents, highlighting that further attention must go specifically to minimising the barriers to access.
Recommendations for improvement
In the online survey, we asked parents, educators and health professionals for their suggestions on recommendations to the current system. Several key themes emerged:
Better integration of services with the education system
There were calls across the board – from parents and health professionals – for better integration of diagnostic and support services with our education system. This was suggested frequently to alleviate the pressure on families struggling to juggle appointments, particularly when in the processing of setting up support. One parent wrote:
“I know parents who have quit their jobs in order to co-ordinate, especially if their child needs an OT, speech therapist and behavioural therapist.”
Another wrote:
“NDIS money would be better spent hiring full time OTs and speech therapists in the school setting, at every school. I would have preferred that to having to find third party providers.”
In addition to reducing some of the barriers of accessing diagnosis and support, several health professionals noted that this could also mean better care and outcomes for children when delivered in the school setting, rather than in-clinic.
Better training for educators, particularly in identification
In addition to better integration of support services in the education system, respondents also called for better training for educators on autism and developmental delay.
Specifically to tackle barriers to diagnosis, many parents called for better training on identification – with multiple parents recounting personal experiences of educators lacking confidence in spotting early signs and therefore delaying communications about developmental delay, ultimately prolonging the time taken to diagnose their child. One parent wrote:
“Both my children have been missed or labelled as normal - but as a speech pathologist mum, I’ve known there was something wrong.”
Another parent wrote:
“If teachers and carers were encouraged to suggest to parents that they might consider diagnostics it would take a lot of pressure off family life for parents who otherwise don’t know why they are struggling so much with their child, and it would improve life for the child as well.”
This parent also spoke of a feeling that educators were told to tell parents “every child is different”, highlighting again the lack of education around developmental delay and autism. Parents, educators and health professionals all responded stating that better training was required to ensure schooling was inclusive and supportive of children with developmental delay and autism.
Centralised directory and better coordination between governments
A recommendation that many parents asked for was a centralised directory of local providers, with services and availabilities clearly listed. One parent said the directory available when they were living in California was a good starting point.
In addition to a centralised directory, many parents and health professionals felt that better coordination between levels of government would assist access to services. One parent wrote:
“There is basically no coordination at a state or federal level. The NDIA are still referring people to services that have closed years ago.”
Stronger governance on fees to reduce overcharging
Across all groups, many respondents shared the perception that providers were “overcharging” and there was “bad behaviour” from suppliers – particularly since the NDIS’ inception. Several health professionals also explained a feeling of parents pushing for a diagnosis, whether true or false, to access NDIS funding so they could afford services which were becoming increasingly unaffordable. One practitioner wrote:
“Clinicians are inadvertently incentivised (and sometimes overtly pressured by parents) to give children diagnoses that lead to financial relief through the NDIS.”
To counter this, many respondents asked for better governance and government oversight of provider fees.
Means testing
Several respondents, including those who acknowledged being on higher incomes, felt that the existing system was not providing support to families who were most disadvantaged. To address this, as well as address the budget strain of the NDIS, many suggested that funding be means tested.
What works well
In addition to asking for recommendations, our survey also asked respondents for feedback on what is currently working well in the system. Many parents who were plan-managed shared
positive experiences with their plan managers, citing easier coordination of support for their children.
The majority of the remaining parents were on self-managed plans and wrote positively of the flexibility of the funding, so they could create plans to best suit the individual needs of their children.
Challenges in reforming the image of the NDIS
It is worthwhile noting that in the responses from those who weren’t parents or carers, the most common concern was the high cost of the NDIS to the budget. Many respondents felt that the NDIS in its current form is “unsustainable” and “spending is out of control”, with companies are taking advantage of the system to “rort” and “defraud” people for profit.
The negative perception in regards to the fiscal drain of the NDIS was often extended to NDIS participants. Overdiagnosis was a repeated concern and many spoke of an increased volume of participants on the NDIS, pushing out the most disadvantaged in our community from accessing support. One respondent wrote:
“I know several people on the NDIS that have very mild conditions and are completely able to work and choose not to because [of] the NDIS, the most disadvantaged people aren’t supported”
These responses highlight the substantial challenge for this government to reform the image of the NDIS if it wants to bring the public along in meaningful reform.
Our community is open to change – but want more detail
Finally, when asked if respondents had anything further they wished to share – many stated being open to change and agreed there was room for refinement in the NDIS, however respondents felt they were lacking in information about what the future plans would look like.
Conclusion
I trust this information is helpful for the inquiry into the Thriving Kids initiative and ask that my feedback and that of the constituents in my electorate be considered when making your recommendations.
This is a very important Review, and it is vital that the government act on the significant concerns of a broad range of people across the country and in Wentworth.
Warm regards,