House Standing Committee on Health, Aged Care and Disability
PO Box 6021
Parliament House
CANBERRA
HCCA Submission: Inquiry into the Thriving Kids Initiative
Thank you for the opportunity to provide consumer focussed input to the development of the Thriving Kids Initiative. We firmly believe that this major policy change requires significant and ongoing, broad community consultation. This should include families, schools, teachers, health services, and clinicians.
The Inquiry has provided a very tight timeline for submission development and we are concerned that this may impact on the breadth and quality of submissions received.
We strongly encourage that this consultation is part of an iterative process that seeks community views as development of the Thriving Kids Initiative progresses.
We also suggest that it is important that the feedback received from the current Disability Standards for Education Consultation is fed into deliberations around Thriving Kids and the involvement.
There is wide community concern that the timeline for implementation of this policy is inappropriately short in light of the significant re-structuring of resources required to re-establish supports in already pressured health and education systems. It is vital that this initiative is implemented in a way that ensures children and families do not fall through the gaps as systems, services and processes are established or re-established outside the NDIS.
Yours sincerely,
redacted
3 October 2025
Health Care Consumers’ Association
ABN: 59 698 548 902 | RAB No: 672 547 5772
70 Maclaurin Cres, CHIFLEY, ACT 2606
Phone:02 6230 7800 Email: adminofficer@hcca.org.au
hcca.org.au | rf) hcca.act | @hcca.act
SUBMISSION
Inquiry into the Thriving Kids Initiative
October 2025
About HCCA
The Health Care Consumers’ Association (HCCA) is a health promotion charity and the peak consumer advocacy organisation in the Canberra region.
We speak up for people who use health care.
We work with community members to:
- Help people understand how to use health services and get the most out of them.
- Become health care advocates and speak up for themselves, their families and their communities.
We work with health services to help them:
- Understand the needs of people who use health care.
- Make services work better for consumers.
- Communicate better with consumers.
This submission was prepared by HCCA staff based on feedback from HCCA members, and the HCCA Health Policy and Research Advisory Committee.
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HCCA’s Approach to this submission
HCCA is a member-based organisation and we draw on the views and experiences of our membership and community networks to advocate for consumers.
The short deadline for this inquiry meant that in preparing this submission we have relied more heavily on staff knowledge of potentially relevant issues. We have also included a selection of community members’ reflections on experiences of accessing support for children with developmental differences that we consider reflect the intent of the “mild to moderate’’ label used in the Thriving Kids announcement.
This submission do not serve as an ACT environmental scan but rather a small snapshot of known services, service history and consumer needs and experiences that may contribute to the building of a complete picture.
Please note that the feedback provided in this submission is specifically relevant to the ACT. We recognise that systems and services vary nationally.
Terminology and Diagnostic Frameworks
The terms “mild to moderate developmental delay” and “mild to moderate autism”, referenced by Minister Mark Butler in his National Press Club address (20 August 2025), are not supported by current clinical or diagnostic frameworks. The DSM-5, diagnostic manual used by clinicians, makes no provision for categorising developmental delay or autism spectrum disorder (ASD) as “mild” or “moderate”. Instead:
- Global Developmental Delay (GDD) is used to describe children under five who are too young for a full diagnosis.
- ASD is classified by levels of support required (Level 1: Requiring Support; Level 2: Substantial Support; Level 3: Very Substantial Support).
The use of non-clinical, undefined descriptors such as “mild to moderate” lacks evidence, risks invalidating lived experiences, and may lead to significant inconsistencies in service provision. As highlighted by the People with Disabilities Australia Language Guide – a guide to language about disability1, the term “mild autism” can be dismissive and fail to acknowledge the masking or functional challenges experienced by individuals on the spectrum.
The ambiguity and imprecision in this language raises concerns for consumers about the validity and safety of designing early intervention strategies based on these undefined terms. It is essential that any new initiative is grounded in evidence-based diagnostic language and professional practice.
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| What not to say | What to say |
|---|---|
| Aspy/aspie, profoundly autistic, mild autism | Karim has autism, or Karim is on the autism spectrum |
| High functioning/low functioning | Sue is autistic/Autistic (if she identifies that way) |
| Mental | Li is neuroatypical/ neurodiverse/ neurodivergent |
| Hyper/hyperactive, space cadet | Marcia has ADHD |
| Slow learner, stupid | Florence has a learning disability |
Figure 1. PWDA Language Guide – a guide to language about disability2
Consumer Case Study
My 7yo son was diagnosed in September 2022 with “sufficient DSM-5 criteria for a diagnosis of autism. At this stage in his development, he requires substantial support in social communication (level 2) as well as substantial support (level 2) for interests, activities, and repetitive patterns of behaviours”.
Over the next three years with NDIS funding, and his paediatrician, we have layered medication, mental health support, capacity building, and support work to provide a stable routine and environment. During this time my son displayed behaviours of concern, self-harm, unsafe exit seeking behaviours from school, repetitive death narrative ruminations, low self-esteem, anxiety, aggression and physical violence towards siblings, parents, peers and educators. Life has been very challenging both at home and at school. He is the eldest of three boys, all now receiving support through the NDIS. His parents are also neurodivergent. As a family we have substantial support needs.
In the same timeframe described above, my son has also been social, empathetic, caring, engaged in his education with no sustained absence from school, made and kept friends, joined a soccer club and participated in mainstream sport, and recently participated in and won a novice robotics competition with a team of peers from his school.
So, my question about Thriving Kids – is my son mildly or moderately autistic? I’m sure he appears to have mild autistic traits some of the time, moderate autistic traits some of the time and severe autistic traits some of the time. Where would we fall in this definition? I was told by NDIA that my son has a permanent disability and will be supported by NDIS permanently. Now within 3 years of being told this – we could be
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reclassified as ‘mild or moderate’ and be transitioned on to a program that offers far less support.
NDIS funding has been fundamental to making progress over the last three years. My son won’t magically be “cured” one day, but the slow and steady progress made through routine, support and capacity building with ongoing therapeutic relationships is starting to show a clear and brighter path for him. This is what the NDIS is supposed to do, and it feels like the rug is about to be pulled out from under us.
Identifying Developmental Delay – Role of Parents and Professionals
A premise of Thriving Kids—that parents can identify and support developmental delays in their children using publicly available resources—undermines the critical role of health and development professionals. Developmental delays and neurodevelopmental conditions are often complex and nuanced. There are many conditions that may present with similar developmental signs (e.g. trauma, hearing loss, or chronic health issues), which makes accurate identification by non-professionals extremely difficult.
Parents, particularly first-time parents, are not equipped to distinguish between typical variation in child development and signs of concern, nor should they be expected to. Delegating this responsibility to parents risks delayed diagnoses, ineffective interventions, and increased family stress—particularly among families with lower health literacy, those from non-English speaking backgrounds, or those affected by trauma or systemic disadvantage.
We strongly recommend that early concerns raised by parents be referred to qualified health professionals—such as GPs, paediatricians, or early childhood clinicians—who can perform a comprehensive assessment and develop an individualised support plan.
Behaviours can be individual and nuanced in young children, and it would be very challenging to make generalised evidenced-based resources and information checklists on child development that could be applied across the board.
There is unlikely to be a ‘one size fits all’ resource for screening, recognising and supporting developmental delays that would be appropriate for all parents to use and understand.
Currently EACH3 clinicians do intake, interviews, observations, talking to educators, and then make individual recommendations for ongoing support. In the case of the NDIS early childhood approach, this then includes setting individual goals for each child and developing an individualised therapy and support plan.
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It would be a significant expansion of the scope of Maternal and Child Health (MACH) services in the ACT to provide this level of assessment and support.
Effectiveness of Current and Past Programs
Child and Family Health and Primary Care
Current screening processes in primary care (e.g. through the “Blue Book” developmental checks) provide only basic information on developmental milestones and rely heavily on parental input. These tools are not sufficient as a comprehensive screening or early intervention mechanism. Anecdotally, we understand that many children with autism or developmental delays pass these checks and are diagnosed later, often when they enter formal schooling or when schooling becomes more challenging, such as the transition to high school.
GPs and MACH (Maternal and Child Health) teams can definitely play an important triage role, but limited appointment time, lack of training, and long referral waitlists mean the capacity for targeted or ongoing support is minimal. Access to paediatricians is restricted by availability, with long delays, particularly in the public system.
Families face significant financial and systemic barriers to accessing private allied health services, even when Medicare rebates are available. Families have shared with us that the five subsidised sessions per year under chronic disease or mental health care plans are insufficient for meaningful progress.
Community-Based Support Services
While services such as ACT Playgroups and the University of Canberra student clinics offer some support, most are non-therapeutic, limited in reach, and underfunded. Programs like Cool Kids may offer lower-cost alternatives but are not appropriate for all children, particularly those with autism or trauma backgrounds. Many low-cost options are either at capacity, or too narrowly targeted.
Community programs like PlayConnect4 and Marymead’s social groups5 offer beneficial peer support but lack the clinical oversight necessary for diagnostic or therapeutic intervention.
Early Childhood Education and Care (ECEC)
Educators in ECEC settings have limited training in neurodevelopmental identification and are often not supported to navigate referral pathways. While some early education centres collaborate with families to identify concerns and refer to wellbeing programs, these are not widespread or consistently resourced.
Without significant investment in training and specialist support, early childhood educators cannot be relied upon to deliver screening or intervention services as part of Thriving Kids.
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School Case Study
Blue Gum Preschool in the ACT has used some of its funding to employ an OT and Speech therapist for a half day per week for their 50-student cohort across two campuses. The children are included in what they call “health and diversity” groups of about 5-6 children when differences are noted. They work on emotional regulation strategies and speech exercises. However, it’s very difficult to offer observations for individual children in this kind of setting or work on any 1:1 individualised support. It does help the teachers with suggestions on equipment for the preschool and how to modify activities for certain kids to improve access. It does not operate at a level that might constitute therapeutic early intervention support.
Primary Schools
School supports are patchy, under-resourced, and inconsistently delivered. While Individual Learning Plans (ILPs) are a valuable tool, the availability of in-school therapists is extremely limited. Psychologists often serve multiple schools and are unable to deliver sustained, individual therapy.
Private therapy access within schools depends on the NDIS and parental capacity to navigate the complex systems.
Primary schools provide only very limited or no ongoing 1:1 therapy supports. It is largely seen as the role of NDIS to support the individual therapies and strategies for primary school aged children. With the agreement of the school, private therapists (including those funded under the NDIS may attend schools for 1:1 session separate to school employed educators or allied health staff.
Individual Learning Plans (ILP) are developed collaboratively between parents and educators. ILPs are term-to-term individual plans that identify where a student needs extra support. The number of ILPs at the school is notified to Nationally Consistent Collection of Data on Disability (NCCD)6 and impacts the disability funding provided.
NDIS already does not fund any supports for school as that is the nominal responsibility of the education system.
ACT Education Department School Psychologists do not provide individual therapy and are also very thinly spread in the public school system. This can mean two schools often share one FTE equivalent, which can result in one psychologist supporting the needs of up to 1200+ students. The Australian Bureau of Statistics tells us that in 2022 around 4.3% of children aged 5 to 14 was autistic7. This could result in one psychologist supporting up to 50 autistic children and their teachers. This is before they even consider those with other neurodevelopmental differences or who experience trauma or other challenges.
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Consumer Case Study
A recent example provided by a consumer described that her eldest child had passed and exceeded all his early childhood development checks, especially his grasp of speech and language. According to her as a first-time parent he appeared to play with other children, seemed to be able to tell the difference between real and make-believe, and seemed to do things children of the same age did in accordance with the Blue Book questions for a 4yo.
Looking back and understanding her child within the context of his later diagnosis of autism, he played ‘alongside’ other children closely observing and mimicking their behaviour, his ‘make believe games’ consisted of sorting and categorising activities for example what looked like the ‘zoo game’ was in fact putting toy animals into land-based, ocean-based, predator and prey categories, and his advanced language was because he was a gestalt language processer. These are all early signs of autism, however as a parent observing this behaviour, there was not enough detail in development discussions with MACH and GPs to pick up on these traits and understand that interventions may be helpful.
Primary Care and Allied Health
Initial discussions on child development can, and do, take place in the primary health setting either with the MACH team or GPs. GPs may refer directly to allied health supports, or to a paediatrician for further investigation. There is limited ongoing support provided by GPs and their involvement is by and large a triaging step.
Waits for access to an appropriate paediatrician (in the public or private system) can be very long and with substantial intervals between appointments. Paediatricians are not able to provide ongoing support and advice to parents.
GPs can offer a health care plan for children (usually under a chronic disease management plan or mental health care plan) which can enable them to access 5 or 10 allied health sessions per calendar year with a Medicare rebate.
These sessions often attract an out-of-pocket cost (and often a substantial one), putting access beyond the reach of many families. This is an impediment to early and sustained intervention for children.
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Consumer Case Study
When I took my concerns about my child’s development to the GP, I was referred to paediatrician, who referred me to a private psychology practice to have a comprehensive assessment done including Autism/ADHD/Cognitive assessment. There was no discussion about support offered through GP channels, as there is very limited time to do anything in a 10-15min appt.
Later, I was referred to an OT by the GP because my second child had uncoordinated movements and spatial awareness difficulties as a preschooler but that OT never contacted me. It’s not a very connected channel. Parents often have to doggedly chase down allied health services by themselves because private providers are very booked up with NDIS clients. I’ve never had a GP or Paediatrician go into battle to find availability for me with allied health providers.
Before we got on NDIS for my younger child, we accessed play therapy / OT privately. I got 5 sessions with a Medicare rebate. The rebate was $58 and the session was $193.99. So basically $140 a week at the rebated price. We could only maintain that for a few months before it became unaffordable as we had to pay the full price after 5 sessions. When he got an NDIS plan and his OT sessions were covered he was able to access them weekly with no stoppage and has made great progress.
Consumer Case Study
Early Childhood educators were often able to identify some developmental differences in collaboration with me, but I had to lead the conversations and ask for the observations. These conversations were only initiated by early childhood educators when they were related to incident reports or behavioural issues (i.e. you child is biting, scratching, hitting etc). They were only able to report basic information and I often had to request that behavioural differences and aggressive behaviours be observed and mapped in relation to triggers, the environment and routines/activities. It felt like the discussions with me were only initiated by the staff when it was mandatory to report an injury, head knocks, broken skin through biting, falling, scratching etc.
In later years after I pursued early intervention for my kids, the early education staff would often ask me what was available and what services they could tell other parents about. I have often been asked in early education and preschool settings if my contact
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info can be shared to other parents to offer advice on early development delay because it’s not very clear in many early childhood settings what the options are.
Also, conversely in a different early childhood setting for my older son, the differences I was identifying myself were downplayed in early education settings as “still developmentally appropriate for age” when I felt they weren’t. There was a bit of “let kids be kids” type of pushback and as a first-time parent I didn’t advocate further. This led to my first child being diagnosed later with autism and ADHD at 7yo once challenges became problematic in primary school rather than accessing early intervention.
For my subsequent two boys I pushed harder when I noticed the differences and didn’t chalk it up to “kids being kids” and got early intervention and diagnosis at 3yo and 5yo with EACH, NDIS and assessment. It wasn’t my experience that early years educators have any background, training or experience in early intervention for developmental differences.
Previous Services Overtaken by NDIS
Therapy ACT, along with the early intervention services it offered, was disbanded in late 2014 following the introduction of the NDIS in the ACT. (which is now pared back as Child Development Services) Therapy ACT provided therapy, play groups and early intervention support to kids with developmental delays, autism and other health and disability challenges across their younger years. Child Development Services in Canberra Health Services now provide a very restricted range of these services.
The limits to existing service capacity were some of the noted reasons the NDIS Early Childhood Approach was introduced; to expand access and services beyond what Therapy ACT alone could provide. Further analysis on the costs and support levels provided by Therapy ACT and NDIS for early intervention is provided in Section 0, but suffice to say both these schemes offer significantly more than what could be afforded by the currently proposed Thriving Kids initiative.
Consumer Case Study
When private autism/ADHD/cognitive assessment was completed for my 7yo, and the primary disability was diagnosed as ASD Level 2, it was recommended I contact EACH as a next step, and through EACH we were assessed and accepted into early childhood approach through NDIS. This was the bouncing ball we were told to follow for our situation. When my son turned 8 he ‘aged out’ of the early childhood approach, and his progress and challenges indicated we could continue to access NDIS funding through the adult partner - Feros Care. At this stage I was told we had permanent funding that
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would be reassessed periodically and would taper up or down depending on need. It was emphasised that was a permanent support system for him.
The Workforce
We are not clear on where the workforce is intended to come from. Our health and educations sectors have significant and ongoing workforce shortages and it is unrealistic to expect that they stretch to cover the breadth of services they may be required to provide under the proposed program.
Our understanding is that when the NDIS was introduced, two thirds of the relevant ACT public sector workforce (approximately 260 allied health workers) were ‘transitioned’ out of the public sector and assisted to set up private practice to be funded under NDIS plans. Many of these providers had been working for what was then known as Therapy ACT.
The structure of the NDIS means that these providers are now in private practice and will make individual decisions about returning to the public sector. In 2014, The NDIS Task Force distributed the Commonwealth sector development fund of $12 million for the ACT. This funding was used to transition the workforce to a private provider model. They were given business development grants to overhaul their financial systems, their IT systems, and learn how to be private business rather than quarterly block funded programs. These grants were also used to develop websites, advertise and market their services.
Further to the $12 million in development funding, the Commonwealth sector development fund provided a further $6.3 million to support the sector to do outreach and peer support to help people with disabilities understand and utilise NDIS.
64 Government and not-for-profit organisations were supported by the NDIS task force to become businesses through this funding.
We are hearing from the community that they are, perhaps rightly, worried about being pushed back into public services because those services do not currently exist. And there is a strong sense that health and educations budgets are already strained and impacting the quality and safety of services. How they absorb the costs of re-establishing services to meet the needs of Thriving Kids is very unclear – even with the funding committed by the Commonwealth.
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Basic Modelling: Early Intervention Investment Before NDIS, After NDIS and Post NDIS
We have undertaken some basic modelling to understand the scale of the funding shortfall and the likely scale of community demand for services under Thriving Kids.
As per Figure 2 below the Minister for Disability in the ACT in 2009 reported Therapy ACT provided 58,738 hours of service to children in the ACT in early intervention supports. The population of the ACT in 2009 was approximately 352,200 and the population of children 0-8 years was approximately 43,300.
If we say 3% of the young population of 0-8yo children had ‘mild to moderate developmental delay and autism’ that is approximately 1300 children potentially supported by Therapy ACT in 2008-09 by 58,738 hours of drop-in clinics and therapy support. When calculated further this equates to 45.18 hours per child per year or the equivalent of a 1-hour session for each child per week (excluding some school holidays).
Figure 2: Therapy Hours Provided by Therapy ACT Pre-NDIS
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This is similar to what the then Disability Minister quoted:
“In 2012 more than 1200 children were seen through Drop-In clinics, with around half of these children being referred to Therapy ACT for further assessment or intervention,” Ms Joy Burch - Minister for Disability, Children and Young People8
If Therapy ACT were able to provide 58,783 hours of therapy at an approximate cost of $191.19/hr (as per Figure 3 below) that is a therapy budget of approximately $11M per year (equivalent to approximately $16M now).
Figure 3: Cost of Therapy Per Hour in the ACT in 2008/09 FY9
As of June 2023, when the Development Delay Summary was published by NDIS, 67,558 participants had a primary disability of developmental delay (which is diagnosed predominantly in children under 8 years). Of those, 2% resided in the ACT (See Figure 4 below), so the NDIS supported 1351 kids with developmental delay. The average cost per NDIS plan for a child with this primary diagnosis is $12,100 per year, with 80% going towards capacity building therapies and 20% towards consumables, transport and core funding for day-to-day
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activities10. These capacity building therapies reflect approximately 1 hourly session per week per child (excluding some school holidays). Therefore, the NDIS budget in 2023 for children with developmental delay in the ACT was approximately $16M ($13M of which was directly for therapies).
Figure 4: % of Participants with of Developmental Delay by State11
This working suggests that NDIS funding was on par with the block funding provided to Therapy ACT to provide early intervention therapies immediately before NDIS became operational and Therapy ACT was dismantled. Both schemes appear to have offered broadly similar therapy hours per child.
Thriving Kids proposes to fund early intervention supports for children with $2B over five years. If this is broken down by population, the ACT would likely receive 2% of this funding which is equivalent to $8M per year for five years. In comparison to what was funded and provided by Therapy ACT and subsequently the NDIS, Thriving Kids offers a substantial decrease in funding. Our question is whether the ACT government can make up the shortfall despite the significant existing operating deficits? We are concerned this initiative represents a devaluing of the importance of skilled early intervention contrary to evidence-based best practice.
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1 PWDA Language Guide: A guide to language about disability
2 PWDA Language Guide: A guide to language about disability p. 13
3 Childhood development - Each
4 PlayConnect - Playgroup Australia
5 Autism Groups | Marymead CatholicCare - Marymead CatholicCare
6 Home - Nationally Consistent Collection of Data
7 Autism in Australia, 2022 | Australian Bureau of Statistics
8 Speech therapy drop in centres are go | Region Canberra
9 DEPARTMENT OF DISABILITY, HOUSING AND COMMUNITY SERVICES
10 https://dataresearch.ndis.gov.au/media/3819/download?attachment
11 https://dataresearch.ndis.gov.au/media/3819/download?attachment
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