Submission 332 — Ms Monika Schofield , Phoenix Therapy & Inclusion — Inquiry into the Thriving Kids initiative | External submission

3 October 2025

Submission to the ‘Thriving Kids’ parliamentary inquiry

I write in response to the inquiry into the ‘Thriving Kids’ initiative. I am a post-graduate

qualified PACFA Registered Clinical Counsellor, Disability & School Advocate, NDIS Support

Coordinator / Psychosocial Recovery Coach, and Mental Health Support Worker. I am also a former public servant with wide-ranging policy and project management experience, a former Conciliation Officer with the Anti-discrimination Board of NSW (Wollongong), and former Disability Royal Commission Advocate.

My lived experience as carer and family member alongside two (one early diagnosed and one late diagnosed) autistic individuals has included: navigating the interface between the Health, Education, and NDIS systems; supporting and coordinating the complex process of early diagnoses, early intervention, NDIS application, approval, planning and review processes; identifying and supporting the establishment of therapeutic supports; identifying and implementing tailored evidence-based therapeutic approaches; identifying and supporting the transition to appropriate education settings; and advocating for reasonable adjustments across early education, school and employment settings.

Outside of the NDIS, over the years we have experienced detrimental systemic impacts arising from ill-informed, discriminatory and non-supportive environments in relation to autism and co-occurring conditions, which have led to personal and significant health, social and financial costs for our family. This includes experiences of: exclusion and discrimination in early education and school settings; the lack of willingness of schools to implement reasonable adjustments despite inclusion funding being attached to autism diagnosis; widespread misconceptions of neurodivergent conditions; a lack of understanding of the presence and impact of sensory triggers to challenging behaviours; underemployment due to inflexible workplace policies and practices which are not willing to accommodate caring responsibilities, and which would allow my partner and I to share care more equally; the inability to use after school hours care due to insufficient adult/student ratios and expertise around autistic challenges and needs; social isolation; significant health impacts to our whole family including carer burnout; and a significant lack of acknowledgement and meaningful support for carers which would support us all to fully participate, contribute and flourish in society.

Personally, such systemic impacts have led to the need for us to sell our house and move states in order to attempt to access more affordable housing and more inclusive schooling. I have also been restricted to working minimal hours as a sole trader of my own business due to the flexibility I need to fulfil my primary caring responsibilities. The financial cost of providing intensive primary care, despite NDIS support, and the related loss of income

despite professional qualifications and experience is significant and has affected the wellbeing of our whole family system. I am aware that our experience is not uncommon and the voices of others with lived experience tell a similar story. Yet broader societal costs, including to women who make up the majority of primary carers, along with the ignorance of autistic strengths and contributions, have largely been ignored by the Thriving Kids proposal so far.

In particular, I refer to the nature of the recent ‘Thriving Kids’ announcement made by the

Hon Mark Butler MP, Minister for Disability and the National Disability Insurance Scheme,

initial ‘Fact Sheet’, and related media stories which have been disseminated about autism and the NDIS since.

The Thriving Kids proposal states that:

The Australian Government is restoring the National Disability Insurance Scheme (NDIS) to its original purpose—supporting people with permanent and significant disability —and ensuring the Scheme remains sustainable. Reforms announced by Minister Butler on 20 August 2025 will secure the future of the Scheme and put people with disability and their families back at the centre of the NDIS.

From the outset, the grouping together of autism with developmental delay - including the notion that autism should not be considered ‘significant’, ‘permanent’, or a disability eligible for NDIS support for the majority of children on the NDIS - have left many autistic individuals, families and advocates concerned.

In relation to the context of the NDIS, the Thriving Kids proposal’s minimisation of the characteristics and impacts of autism ignores its complex medical diagnosis along with its relationship to the human rights model of disability.

Autism is already considered a lifelong (permanent) neurodevelopmental condition. Furthermore the condition meets the ever-narrowing disability criteria of the NDIS, particularly where significant functional impacts are evident. Understanding of the condition and medical classification of the characteristics of autism have evolved over the years, as demonstrated across the various iterations of the Diagnostic and Statistical Manual of Mental Disorders (DSM). Furthermore, contrary to populist rhetoric, increasing awareness of the characteristics of autism and changing diagnostic criteria have led to an increase in neurodevelopmental diagnoses.

The current DSM-5 TR (2022) diagnostic criteria for autism spans across two domains: 1) social communication and social interaction, including ‘deficits’ around: social-emotional reciprocity, nature of non-verbal communicative behaviours, and relationships; and 2) restricted, repetitive behaviour, interests or activities, including ‘deficits’ around: speech, motor movement and use of objects, adherence to routines and resistance to change, level of fixation on personal interests, and reactivity to sensory input.

Contrary to the initial framing of autism in the Thriving Kids announcement, there are no ‘mild to moderate’ levels of autism, only fluctuating levels of support needs across a spectrum of characteristics across different contexts, times and environments.

Severity ratings between levels 1-3 (‘requiring support’, ‘substantial support’, or ‘very substantial support’) are used by evaluating practitioners to identify and describe relative support needs across each of the two diagnostic domains at a given time. A child receiving a diagnosed ‘level’ of autism in a clinic may well present differently in this context as compared to other contexts (such as school and/or home). Due to the fluctuating nature of levels and need for support, any proposed linkage between diagnosed levels of autism to access to the NDIS versus community-based services would be problematic and should be avoided.

Research along with professional and lived experience suggests that information processing and emotional regulation issues are amongst the primary challenges identified by autistic individuals themselves. This includes sensitivity and reactivity to various sensory input leading to severe distress and subsequent ‘challenging behaviours’, which are often punitively and stereotypically misunderstood as deliberate resistance or misbehaviour.

The level of impact of non-neuro-affirming environments, lack of access to necessary disability-support (including a lack of funded support workers within and outside of the NDIS) and the experience of the condition itself contrasts with the stereotypical views which have been promoted and indirectly encouraged since the Thriving Kids announcement.

Inaccurate and misleading language around autism and the NDIS encourages divisions within the disability community and broader society, creating apparent ‘deserving’ and ‘undeserving’ groups in competition for adequate disability-specific support. Negative stereotypes around autism and neurodivergent recipients of NDIS support have been perpetuated through some of the rhetoric surrounding the current ‘Thriving Kids’ proposal and reflected in responses/comments to the announcement and related articles in popular media (ie attitudes such as: ‘every kid’s getting diagnosed with autism nowadays’, ‘parents are only seeking a diagnosis to get government perks and handouts’, ‘yes, take autistic children out of the NDIS – it’s a rort to the system’, ‘there was no autism or ADHD in my day before NDIS’, ‘parents should stop being lazy and learn how to discipline their children better’, ‘the only reason children are like this is because schools aren’t allowed to discipline children anymore’…).

The process of NDIS reform and Thriving Kids should be careful not to further stigmatise an already vulnerable group, which already experiences direct and indirect discrimination on the grounds of a largely misunderstood and complex disability. Yet the aforementioned narratives around autism and the NDIS, perpetuated by the nature of the early Thriving Kids announcement and exclusion of those with lived experience of autism and their advocates in a true co-design/co-production process - are already having a detrimental impact on community attitudes.

Life Outcomes and Risks for People with Autism

On 27 November 2019, the Senate resolved to establish a ‘Select Committee on Autism’ to inquire into and report on the services, support and life outcomes for autistic people in Australia’ including the associated need for a National Autism Strategy (which has subsequently been developed). Amidst its comprehensive report, the Committee highlighted the following in relation to some of the life outcomes for autistic Australians:

Life outcomes for autistic Australians are unacceptably poor. This comes at an enormous personal, social and economic cost (p. v).
Autistic people have a life expectancy more than 20 years shorter than the general population, with more than twice the mortality rate (p. v).
Autistic people experience high rates of co-occurring mental health conditions and are more likely to attempt or die by suicide than other groups (p. v).
Mental health problems are not inevitable for autistic people and instead can be the result of, or made worse by, discrimination and isolation (p. 26-27).
Seventy-five per cent of autistic people do not complete more than a Year 12 education, while the unemployment rate for autistic people is almost eight times that of people without disability (p. v).
In relation to higher education, the committee heard that significant numbers of students do not disclose their diagnosis for fear of discrimination. However, this can mean students are left without support and are exhausted from trying to mask their autism. In turn, this can result in students withdrawing from their studies, as well as suffering potentially long-lasting mental health impacts (p. xiv).
Autistic individuals also appear to be overrepresented in the justice system and at higher risk of homelessness than the general population (p. v).

This is by no means an extensive list but offers some insight into the urgency around accurate early diagnosis, appropriate levels and types of intervention, targeted support, and systemic change.

The Australian Government’s National Roadmap to Improve the Health and Mental Health

of Autistic People 2025–2035 has also raised physical, mental health and suicide amongst Autistic people as key concerns, further stating that ‘it is common for Autistic people to experience the following physical health conditions at higher rates as well as others which are not listed: ie. gastrointestinal conditions; central nervous system conditions; epilepsy; autoimmune conditions; sleep disorders.

Autistic individuals are also at higher risk of mental health conditions which may include: anxiety and depressive disorders; bipolar and mood disorders; eating disorders; schizophrenia; obsessive compulsive and related disorders; and substance use disorders.

‘Autistic people suffer poorer physical and mental health than the general population, including greater risks of co-existing conditions, shorter life expectancy and premature death’ which can, amongst other factors, be attributed to ‘experiences of social exclusion and isolation, bullying, discrimination, abuse and domestic violence. Autistic people also report that having a co-occurring mental health condition can be a significant barrier to accessing existing health services’ (p.11).

Drivers of poor outcomes for people with Autism

Given the risk profile and life outcomes of autistic Australians it is understandable that autism has gained a national focus. This is in contrast to autism being framed as a financial ‘burden’ on the NDIS.

The Select Committee’s Report identified some of the key drivers of poor outcomes for autistic Australians as including:

poor understanding of autism within the community and among service providers;
workforce capacity constraints;
delays in diagnosis and early intervention;
a complex and poorly integrated service environment; and
services that are not designed to meet the needs of autistic people (p. vii). The Senate Select Committee found that misconceptions of autism within the community, as well as stereotypical views of autistic people present significant barriers to the social and economic inclusion of autistic people and their families in Australia.

This lack of understanding extended to providers who deliver services to support autistic individuals. Concerningly, this included professionals such as general practitioners, paediatricians, psychiatrists, early childhood educators and school teachers (p. vii). Many autistic individuals and their families and carers can attest to such experiences.

Autism and the NDIS

The National Disability Insurance Scheme Act 2013 sets out current disability criteria and early intervention requirements for deciding the eligibility of applicants to be supported by the NDIS. According to the legislation, a person’s NDIS eligibility is not based on types of disability or the presence of an underlying condition, illness or injury. Rather, eligibility is based on evidence a person has substantially reduced functional capacity affecting their communication, social interaction, learning, mobility, self-care or self-management because of their disability or would benefit from the provision of early intervention supports. Children currently on the NDIS (with and without autism diagnoses) have met this criteria.

Currently, and particularly following recent disability reform reviews, there is a high ‘bar’ for evidence required to show substantially reduced capacity to gain access to or continue on the NDIS . Participants (including children) with higher levels of NDIS funding have often not only met strict NDIS criteria but may have other significant co-existing conditions and/or unique circumstances which exacerbate their formal support needs. This can include a relative lack of informal support systems as well as access and inclusion needs which cannot be adequately met by mainstream environments. Any participant or carer who has undergone the complex diagnostic process for autism, applied for NDIS access and participated in ongoing reviews within the NDIS system is aware that such participation is personally taxing on many levels. Yet the impact of the disability itself, along with systemic barriers, gaps and discrimination drive individuals and their carers to access the best available disability support despite the personal costs. This includes crucial, tailored early intervention for children.

Reframing language around autism within an arbitrary ‘hierarchy of disability’ in order to move a large cohort of participants off the NDIS for economic sustainability will not eliminate disability support needs nor social and economic impacts to the community. As per the Senate Select Committee’s report on Autism, there are many existing services and professions, including schools and health professionals such as paediatricians, that are not adequately autism-informed or neuro-affirming, nor do they demonstrate an understanding of the relationship between autism and co-occurring conditions.

As there are current and ongoing systemic gaps, and autism is a specialist field of knowledge, a lack of understanding and appropriately targeted support already contributes to increased adverse experiences across the Education, Justice, Child Protection and Mental Health systems and to poorer life outcomes for autistic individuals and their carers. The costs and risks relating to these areas appear not to have been considered in the Thriving Kids proposal. This includes the amount of time and resources required to build the capacity of the broader workforce, including across schools, health and community services.

Disability Reform

That is not to say that reform in relation to the NDIS and broader community supports should not take place in relation to autism and neurodivergence. However, an evidence-based eco-system of accessible and integrated support requires co design between the States, Territories and Commonwealth ‘from the ground up’ rather than a piecemeal dismantling of the NDIS according to perceived fiscally problematic disabilities. It will not be possible to design seamless foundational supports that are inclusive and responsive to autistic needs outside of the NDIS without comprehensive knowledge and agreement on changes to parameters within the NDIS.

The Commonwealth is yet to define its proposed parameters around autistic individuals and families who are considered to have ‘significant and permanent disabilities’ (or ‘higher support needs’), what these relative needs and supports might look like, and how access to different types of support might be decided. Designing a system of foundational supports which is inclusive and supportive of the needs of autistic children must complement the types of supports offered across systems with adequate transitional pathways in both directions. As such, it could be argued that the focus of this current Inquiry into Thriving Kids is premature.

A question of capacity

A decrease in cost to the NDIS by shifting funding and responsibility into a more generic ‘Thriving Kids’/Foundational Supports program does not automatically address the lack of existing knowledge around autism nor create neuro-affirming environments. The need for information, accountability and capacity building of service providers and systems are just as important as building the capacity of parents and carers. There has been little emphasis on improving current workforce capacity beyond splitting government funding and resources or shifting environments of support. Mainstream environments are assumed to have the most ‘expertise’ in relation to autism, though from personal and professional experience this is not currently the case.

Not all family systems have the same capacity to provide informal care and/or have access to formal diagnoses which demonstrate higher levels of support needs. The consideration of the economic burden on carers, families and society as a result of underemployment for women in particular should be part of any future system design. This includes highlighting the cost benefits of adequately resourcing formal supports which enable both autistic individuals and their carers to participate fully in society. This would include wrap around supports, including funded support workers, through whichever model or system is delivered, to enable the whole family- or carer- system to participate fully in society.

The lack of systems-focused support, beyond information-giving, for families and carers has also not been addressed in the current proposal. Women already contribute a disproportionate amount of unpaid primary care and informal support for dependents. However, the health and economic impacts related to care around invisible disabilities, including neurodivergent and psychosocial conditions, is often misunderstood and underestimated. This is made more complex in families where caregivers may have undiagnosed neurodevelopmental conditions themselves.

Gender bias and discrimination

A significant impact which has been largely unacknowledged is the impact of indirect discrimination of women, particularly arising from their more prevalent role as primary carers. This has health, employment, financial and social impacts on informal systems of care. Furthermore, as primary advocates for their children and families, mothers and women in general often experience gender bias in their liaison with the medical profession and education sector, where they are often treated as overly-anxious or without expertise. This can be despite extensive lived experience of a given disability, acquired knowledge of evidence-based practices, and/or their own professional development, qualifications and employment experience. Their knowledge and expertise is often sidelined, overshadowed by their undervalued caring role.

It could be argued that such undervaluing of parents, carers and advocates attempting to be involved in the current reform process (the majority of whom are women) has continued.

Commitment to co-design principles and evidence-based approach

In relation to community input and co-design, broader stakeholders (including parents and carers) have not had meaningful opportunity to contribute or respond to the more recent framing of 0-8 Foundational Supports in the form of the Commonwealth’s ‘Thriving Kids’ proposal - in particular, the inclusion of autistic children as a targeted disability cohort as part of the Commonwealth’s plan to transition the majority of autistic children off the NDIS.

Prior to Minister Butler’s recent announcement, consultations which occurred around ‘Foundational Supports’ (at least in QLD) lacked defined parameters and only included a broad reference to ‘developmental delay’. At the time, consultations and co-design processes were attended by stakeholders in good faith. However, the Minister’s sudden and unilateral Thriving Kids announcement in the middle of an attempted co-design process in relation to foundational supports has eroded trust. This includes a lack of meaningful consultation on the new parameters of Thriving Kids in the context of autism, foundational supports and the NDIS.

It also appears that the Thriving Kids proposal may have failed to consider the key findings of parliamentary inquiries that have already taken place around into Autism as well as ADHD (a common co-ocurring neurodevelopmental condition) along with autism-informed evidence, before proposing the Thriving Kids initiative.

Such evidence should be considered within the broader context of the support needs and risks relating to autistic and neurodivergent individuals, along with the Australian

Government’s strong strategic directions as set out in the following government reports and strategic documents:

‘National Autism Strategy 2025-2031’
‘National Roadmap to Improve the Health and Mental Health of Autistic People 2025–2035’

(The Autism Health Roadmap)

‘The Senate Select Committee on Autism: Services, support and life outcomes for autistic

Australians’

‘Australian Government response to the Senate Select Committee on Autism’, December 2022
Senate Community Affairs References Committee report on the ‘Assessment and support services for people with ADHD’.

Without neurodivergent-informed and -affirming consultations, with clear and cohesive evidence-based parameters, it will not be possible to co-design a new system which meets the fundamental needs of the autistic community and does not risk causing harm to autistic individuals and their carers.

Summary

In summary, the Commonwealth Government’s recent ‘Thriving Kids’ proposal of Foundational Supports for children aged 0-8 rests on the assumption that the majority of children aged 0-8 with ‘mild to moderate’ developmental delay and autism are being inappropriately supported within the NDIS system rather than in community-based supports and environments. This is being presented as a key reason why the NDIS will not be sustainable into the future.

Despite the legitimate need for increased mainstream supports for autistic children, the Thriving Kids proposal appears to be: 1) simplistically targeting specific disabilities based on current direct costs to the NDIS in particular; 2) subsequently reframing and minimising those disability-related characteristics and needs (ie working backwards rather than from an evidence-based approach); 3) working outside of a human rights model of disability in relation to autism; and 4) ignoring significant co-design and consultation processes which have already occurred to date in relation to general foundational supports, or those that have not occurred at all (in relation to Thriving Kids and autism).

The initial iteration of the Thriving Kids proposal assumes that the education system and community based services already have the capacity and knowledge to provide neuro affirming and inclusive support for autistic individuals and families, and that a quick redirection of government funding will be enough to service the high number of autistic children who will be rediverted from the NDIS. It also assumes that autistic families and carers predominantly need further information about autism and routines, rather than individualised supports based on unique needs including potential access to neurodivergent-informed support workers, and that this will be enough to positively support life outcomes for autistic Australians and their families.

It is hoped that this submission demonstrates that such assumptions are problematic.

It is of concern that the costs of the NDIS system appear to be growing at an economically unsustainable rate. However, dismantling the NDIS by selectively re-framing particular disabilities and associated support needs is not the answer, at least not if acting in good faith.

RECOMMENDATIONS:

It is recommended that:

a true collaborative co-design process involving autistic individuals and their carers informs any review of autism-specific NDIS eligibility criteria, capacity and types of service provision, alongside those of community-based supports. This includes any potential transition between systems, with a view of fair and seamless access.
the most appropriate environments for service provision, current gaps, and broader cost benefits of using different systems of support be explored, with direct contribution from autistic individuals, carers and stakeholders.
the full participation and human rights of autistic individuals and their carers be upheld alongside all people with a disability, taking into account their contributions and unique needs. This includes increased inclusion and access to evidence-based neuro-affirming and -informed support and environments for neurodivergent individuals and their carers across systems.
reasonable accommodations be made to allow for the contribution of autistic individuals and their carers to contribute to the co-design process of Thriving Kids. The short amount of time provided to respond to a government inquiry of this significance is an example of an obvious barrier, particularly for carers and families who may already be experiencing burnout from disability-related challenges along with a lack of adequate systemic support.

Given the weight of evidence already available around autistic challenges, the recent Commonwealth government inquiries and plans in relation to autism, the complexities and broader impacts of this neurodevelopmental condition including the importance of tailored early intervention, and a lack of up-to-date understanding of autism amongst the medical and teaching professions, it is requested that the Standing Committee consider the following additional recommendation:

that autism as a specified disability be removed from the current Thriving Kids proposal (in particular the notion of an aged-based transition of autistic children from NDIS-based tailored supports to universal community-based supports) until a true evidence-based, neuro-affirming and -informed co-design process can take place. This would actively include people with lived experience, a notion of fair and sustainable access to support across systems - within and outside of NDIS regardless of age or type of disability.
a significant focus on building workforce understanding and capacity around autism, 9

including addressing significant barriers across systems that have (inadvertently at times) enhanced discrimination, stigma and exclusion, all of which contribute to poorer life outcomes for autistic Australians. The existence of such elements is crucial before any reform is designed and implemented.

Thank you for the opportunity to provide this submission. Please feel welcome to contact me if I can be of any further assistance.

Kind regards,

Monika Schofield

PACFA Registered Clinical Counsellor

Disability & School Advocate

NDIS Support Coordinator / Psychosocial Recovery Coach

Mental Health Support Worker

BA, GradDipPsych, MSocSc (CounsStud), *Master of Autism and Neurodivergent Studies (*in progress)

Ph: Email: