Submission 131 — South West Autism Network (SWAN) — Inquiry into the Thriving Kids initiative

Submission to the ‘Thriving Kids’ Inquiry

09 s2 “swan® October 2025

o www.swanautism.org.au

Executive Summary

The South West Autism Network (SWAN) submission on the Thriving Kids Program strongly advocates for a neuro-affirming, strengths-based, and culturally safe model of support for children with developmental delay and autism, with a particular focus on regional, remote and very remote communities. It calls for equitable, free access to individualised and group supports, preservation of current NDIS eligibility, and genuine co-design with disabled people and families throughout all stages of policy and delivery. Survey data from over 360 respondents across Australia reveals deep community concern that the proposed program risks stigmatising children, narrowing NDIS access, and failing to address persistent systemic barriers to early childhood support, especially outside metropolitan areas.

Key Concerns and Evidence

• Survey respondents, including parents, autistic individuals, educators, and allied health professionals, report significant barriers to diagnosis and support: long waitlists, severe workforce shortages, high costs, and lack of regionally relevant services.
• There is overwhelming opposition to deficit-based, behaviourist models such as Applied Behaviour Analysis (ABA), with strong calls for replacement by neuro-affirming, trauma-responsive approaches in both workforce training and program design.
• Many families fear being forced from person-centred, NDIS supports into a generic, under-resourced ‘Thriving Kids’ program, losing critical individualised care.
• 84.39% of survey respondents said it is difficult or very difficult to access early support for children 0-8 years, with regional, remote, First Nations, Culturally and Linguistically Diverse (CaLD), and low-income families reporting compounded disadvantage.
• The terms “mild to moderate developmental delay/autism” are widely rejected as stigmatising, inaccurate, and harmful - highlighting the need for respectful, strengths-based language and community-led consultation at all levels.

Recommendations

The Government must:

• Guarantee that all children currently eligible for the NDIS retain individualised supports, with no loss of eligibility or funding.
• Design ‘Thriving Kids’ as an adjunct or bridge for children with needs below NDIS thresholds, not as a replacement or restrictive pathway, with no changes to NDIS eligibility requirements.
• Ensure all supports are free, locally available, neuro-affirming, trauma-responsive, and culturally safe - especially for regional and remote families.
• Take the time to develop the allied health workforce to ensure success of the program.
• Invest in robust, place-based workforce development, mandatory training in neuro-affirming practice, and stable funding for inclusive allied health and navigation roles.
• Remove diagnosis barriers for early access to supports; eligibility should be based on functional need, not formal diagnosis, to avoid critical delays.
• Mandate genuine, ongoing co-design and oversight by disabled people, families, First Nations and CALD communities at every level - preventing tokenistic involvement.

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Acknowledgements

SWAN acknowledges the traditional owners of the land on which this submission was produced, the Wardandi Noongar people. We acknowledge the deep spiritual connection to this land and extend our respects to community members and Elders past and present.

Submission preparation

This submission was prepared by South West Autism Network (SWAN). In order to write this submission, we listened to the views and concerns of people with disability, parents and carers, educators, therapists, advocates and the wider community. To aid in gathering quantitative and qualitative data, SWAN developed a survey and received 360 responses from throughout Australia in 8 days. All survey questions were optional.

Survey Respondent Demographics:

Service Provider 30

Parent/Carer 196

Therapist 117

Educator 68 Person with Disability

61

As shown in the pie graph above, survey respondents were able to select as many demographic details as applied to them. Of the 360 survey respondents:

• 54.44% (196) identified as parents or carers of child(ren) with disability
• 16.94% (61) identified as a person with disability
• 7.22% (26) identified as a family member of a child with disability
• 18.89% (68) identified as educators
• 32.50% (117) identified as allied health professionals
• 5.83% (21) identified as disability advocates
• 8.33% (30) identified as working for a service provider
• 5.00% (18) identified as ‘Other’, which mostly comprised parents of children with developmental delay or disability, educators and family members of people with disability.

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Survey responses were received from people living in all states and territories, though only one response was received from the Northern Territory, as shown in the pie graph below:

Survey Respondents by State / Territory:

TAS 1.9%

VIC

QLD 0.3%
14.2%

The majority of survey respondents identified as living outside the metropolitan area (as shown in the pie graph below), which is important given that unintended consequences of the proposed ‘Thriving Kids’ program are likely to disproportionately impact children and families in regional, remote and very remote communities, where resources and workforce are extremely limited.

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We also asked families if they identified as First Nations, Culturally and Linguistically Diverse (CaLD), LGBTQIASB+, and/or as being a low-income family. As shown in the pie chart below, 13 survey respondents identified as First Nations, 12 identified as CaLD, 21 identified as being part of the LGBTQIASB+ community, and 76 identified as being part of a low-

Survey Respondents by Location:

Remote 4.4%

Metro 36.4%

Regional 58.6%

income family.

Survey Respondents by Demographic Group

First Nations 13

LGBTQIASB+ Low Income 21

76

22

SWAN

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About SWAN

South West Autism Network (SWAN) is a not-for-profit, charitable organisation that has been supporting autistic individuals and their families in the south-west region of Western Australia for the past 16 years. We are a Disabled Persons and Families Organisation (DPFO) with more than 2,000 members, and we provide free support to many more people with disabilities and their families. All staff, volunteers, and Board members either have a disability or are family members of someone with a disability.

Our primary role in the community is to provide information, peer support, advocacy, and connections to mainstream and disability services. We build the capacity of people with disabilities and their families to navigate government and non-Government systems to meet their needs and participate in their local communities. We support people seeking diagnosis, post-diagnosis, and across their lifespan, and provide autistic-safe space group programs for autistic children, teens, and young adults through our AutStars and YES Programs. We also deliver Youth Mental Health First Aid training to the wider community.

As a regional not-for-profit Disabled Persons and Families Organisation (DPFO) providing information, peer support and advocacy, we are able to draw on 16 years’ experience supporting autistic individuals and their families, school staff, therapists and the wider community. Our submission aims to include the voices of everyone involved in providing support to autistic children and young people on the proposed Thriving Kids Initiative.

Introduction

The South West Autism Network (SWAN) welcomes the opportunity to provide feedback on the proposed ‘Thriving Kids’ initiative. SWAN is a leading Disabled Persons Organisation based in regional Western Australia, informed by lived experience as well as continuous engagement with autistic individuals, families, and allied health professionals. Our submission is grounded in extensive survey data and qualitative community feedback, and strongly advocates for neuro-affirming, strengths-based, culturally safe, and accessible supports for all children, especially those in regional, rural, and remote areas.

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Examine evidence-based information and resources that could assist parents identify if their child has mild to moderate development delay and support parents to provide support to these children

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Evidence-Based Resources for Parents …………..:cccceeeeeeeeeeeeeeeeeeeneeeeeeeeeeeeeeeceeeeeeeeeeeteeeneneeeeees 8
Individualised Supports and Community Pathways …………..::ccceeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeseeeeeees 9
Policy and Program ReCOMmMendations…………cccececceeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeetegs 9\

• Community Survey and Lived Experience …… eee 9

Examine the effectiveness of current (and previous) programs and initiatives that identify children with development delay, autism or both, with mild to moderate support needs and support them and their families. This should focus on community and mainstream engagement, and include child and maternal health, primary care, allied health playgroups, early childhood education and

Care ANA SCNOOIS ………. ccs ceeeeeceeeecececeeeeeeeeeeeeeeeeeaaaeaeeeeeeeeeeeaaeeeeeeeeeeeesaaaaeceeeeeeeeeessaaaaeeeeeeeeeeessaaaes 10
Strengths of Existing PrograMs 1.0.0.0… einen 14
Inadequacies of Previous Mainstream Early Childhood Services …………..::::ccceeeeeeeeeeeeeeeeeees 14
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• Survey Insights on Gaps and Harm … einen 15

Identify equity and intersectional issues, in particular, children who identify as First Nations and

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Regional, Remote and Very Remote COMMUNITIES «…….. eee cece cece eeeeeeeeeeeeeeeeeeeeeeeeeeeees 17
Addressing the Needs of Low Socio-Economic Families ……………..cccceeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeees 18

• Identify gaps in workforce support and training required to deliver Thriving Kids 19

Draw on domestic and international policy experience and best practice ……………..::ceeeeeees 21

Identify mechanisms that would allow a seamless transition through mainstream systems for all

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Support for Non-NDIS Eligible Children…………….::::ssssesseeeeeeeeeseeeeeeeeesseeeseeseeeeeeeeeeeeeeeeeeeeeeees 26
High Levels of Community Concern and a Call for Genuine Co-Design …………..::eeeeeeeees 29
Risks and Harms If Poorly DeSIQned …………..eeeceeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeteetegs 29
Community Vision for Effective SUPPOMtS…………..:::seeeeseseeeeeeeeeeeeeeeeeeeeeeeeseeeeeeeeeeeeeeeeeeeeeeeeeeees 30

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Terms of Reference

Examine evidence-based information and resources that could assist parents identify if their child has mild to moderate development delay and support parents to provide support to these children

Parents need accessible, plain-language and neuro-affirming resources to help identify developmental differences early and provide ongoing, strengths-based support for their children. SWAN’s evidence highlights the importance of individualised community-based pathways, not deficit-focused models, and the critical need for resources and services available equitably across all regions.

Evidence-Based Resources for Parents

The most effective information for parents includes simple checklists, guides and videos showing typical development and early signs of developmental delays, such as those produced by the Raising Children Network and Autism CRC. These resources help families recognise communication, social, sensory, or emotional differences and encourage them to trust their own observations and seek help from key professionals like GPs, child health nurses, and early educators.

SWAN’s survey found parents rely heavily on instinct, but too often face lengthy delays in accessing support, and too often a lack of validation from mainstream professionals. Families request culturally safe, multilingual, neuro-affirming resources that reflect diverse parenting experiences and are co-developed with disabled people and families from First Nations and CaLD backgrounds. This is reinforced by the National Best Practice Framework for Early Childhood Intervention - work with families, focus on everyday life, and make sure help is culturally safe and neuro-affirming.

Information resources must be locally based and relevant in order to be useful. Resources detailing services available in Melbourne are typically unsuitable for children and families in regional Western Australia and the Northern Territory. The Disability Gateway is an example of an ineffective hotline and ‘one-stop-shop’ service. Western Australians with disability and family members rarely use the Disability Gateway, due to a lack of relevant local content and expertise. SWAN have received numerous phone calls and emails from east coast Disability Gateway staff to ask for advice on services available in the Pilbara and Kimberley — thousands of kilometres away from SWAN’s service location. National hotlines and information services are typically ineffective for Western Australians, as many providers register to deliver services in WA, but fail to have ‘boots on the ground’. The Carer Gateway is more effective, being implemented on a state level, however in a state as geographically vast as WA, gaps in expertise emerge.

Local knowledge and expertise is critical to supporting families to navigate mainstream and disability service systems. Currently this role is being performed by Information, Linkages and Capacity building (ILC) funded organisations, however from early December 2025, ILC funding for 0-8 year olds and over 65 years cease as part of commencement of the reformed ILC program.

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Individualised Supports and Community Pathways

Screening and support should not require a diagnosis; children showing any signs of developmental delay should receive prompt, free support in their local communities, homes, playgroups, early learning centres, and schools. Effective programs focus on participation and enabling children to learn and belong through everyday family life, rather than seeking to ‘normalise’ or ‘fix’ differences.

Children and parents benefit wnen mainstream settings are inclusive, accommodating and well-trained - staff should be neuro-affirming, trauma-responsive, culturally safe and equipped to adjust routines and adapt environments for all children. Parents highlighted the urgent need for trusted local ‘key workers’ or liaison staff to help families navigate systems and access supports, especially in regional and remote areas. Families asked for help without requirement of a diagnosis, individualised therapies, local coaching and support in the home, child and family health centres, playgroups, childcare, kindy and school, and a main contact to keep things moving.

Policy and Program Recommendations

• The National Autism Strategy and its First Action Plan (2025—2026) commit funding for improved pre- and post-diagnosis resources, workforce development, and culturally safe practice, which should be prioritised and expanded through ‘Thriving Kids’.
• Programs should honour parent expertise and reject deficit-based, behaviourist, or surveillance-focused models (such as Applied Behaviour Analysis based programs) that cause harm and trauma for neurodivergent children and families.
• Individualised and group-based therapies and supports must be readily available in every community, delivered free of charge, and responsive to family context and cultural diversity.

Community Survey and Lived Experience

SWAN’s survey underscores that functional needs and family context, not rigid diagnostic labels, should guide access to supports. Parents overwhelmingly demand early intervention that is trauma-responsive, strengths-based, neurodiversity-affirming, and locally accessible to prevent children “falling through the cracks” and to reduce the need for formal diagnosis before help is provided. Quotes from survey respondents include:

“Early intervention should be as simple for an entry point as possible or disadvantage becomes the deciding and continuing factor. Supports should focus on the child’s abilities and challenges, the value of timely intervention, and the family context, ensuring that no child misses out simply because they fall between systems or lack a diagnosis.”

“There are supports for parents up to 5yo — maternal child health nurses, playgroups, parenting resources — then it all stops. There are no resources for kids with needs and MCHNs [Maternal Child Health Nurse] are missing these diagnosis.”

“All children should have access to screening initial sessions with or without diagnosis… Easier pathways for early assessment and diagnosis. First five years of a Child’s life is important; if you can’t get an assessment until five or seven years old, then you have missed pivotal time to provide skills to the child and family.”

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“Easy to access supports. Families don’t have to work the system or find the right words etc to get support for their child. A system to actually support families, instead of trying to trick them out of funding. A focus on children and families’ various need. Trauma informed, culturally appropriate support.”

“Entry without complex assessment. Family-based support. School-based support. Individualised, person- and family-centred goal setting. Resource centres that have therapy toys and hire space for therapists to provide therapy.”

Examine the effectiveness of current (and previous) programs and initiatives that identify children with development delay, autism or both, with mild to moderate support needs and support them and their families. This should focus on community and mainstream engagement, and include child and maternal health, primary care, allied health playgroups, early childhood education and care and schools

Evidence indicates that the disabling impacts of autism can be managed, not cured, with management strategies aiming to embrace neurodiversity, improve skill development, functioning, and quality of life rather than eliminating core autistic traits. Multiple large-scale systematic reviews and meta-analyses confirm that autism treatment outcomes vary depending on the intervention type, the age at commencement, and the specific goals targeted.

SWAN strongly opposes the use of Applied Behaviour Analysis (ABA) based programs. There is growing evidence, especially from autistic self-advocates and newer peer-reviewed studies, that Applied Behaviour Analysis (ABA) can lead to adverse outcomes for autistic individuals, particularly when delivered using outdated or overly compliance-focused models. Some reported harms and adverse effects of ABA are noted below:

• A 2018 peer-reviewed survey (Kupferstein, Advances in Autism) found that 46% of respondents who received ABA met criteria for post-traumatic stress symptoms (PTSD), a rate higher than those receiving other interventions. Autistic adults and children exposed to ABA show a 41% and 130% increased risk of PTSD, respectively.
• Qualitative research from autistic adults who underwent ABA reports negative long-term impacts: erosion of self-identity, self-loathing, loss of self-agency, and persistent negative mental health outcomes, including anxiety and depression.
• ABA’s use of punishment-based methods in early practice, and focus on suppressing harmless autistic behaviours like stimming, has been criticised for causing emotional distress, loss of self-regulatory behaviours, and reinforcing masking (concealing autism traits), potentially leading to exhaustion, burnout, suicidality, and identity confusion.
• Rigid, compliance-driven ABA increases risk of learned helplessness and unquestioning compliance, which can heighten vulnerability to abuse.
• Some studies and advocacy reports document emotional distress, fight/flight/freeze responses, and higher likelihood of mental health complications in autistic individuals who received intensive ABA, especially when therapy disregarded their comfort signals or individuality.

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Importantly, survey respondents are strongly against ABA-based compliance training, with 86.71% stating that it is ‘very important’ that ‘Thriving Kids’ ensures that workers in the program have training in autism-affirming practices (not ABA-based compliance training), and a further 7.69% stating that it is ‘somewhat important’. Additionally, 88.50% of survey respondents stated that it is ‘very important’ that ‘Thriving Kids’ ensures that workers in the program have training in trauma-informed care, with a further 7.67% stating that this is ‘somewhat important’. Comments from the survey include:

“Seems it is ABA dressed up in new language. We need neuro affirming supports not more ABA.”

“Long-term trauma. ABA practices forcing kids to comply and mask to be more neurotypical.”

“Not only do | think it will make waitlists longer | doubt support will be tailored for the individual or neuro-affirming. We will be going backwards.”

“Absolutely, not. | think that this announcement on thriving kids is already causing harm in the autistic community. The families and the children that | see every week are already showing me signs of distress and lack of hope for the future. They are already impacted by significant difficulties with accessing the things that they need. Including IEPs [Individual Education Plan] at school therapy in funding. They are already in burnout. End making announcements such as this causes more harm. Especially when the details have not been provided.”

“If not designed well, the Thriving Kids program could create several risks and harms. The biggest concern is that it may be used to reduce or remove NDIS access for children who still need individualised supports, leaving families without the level of help required… There is also a risk that supports may be too generic, failing to meet the specific needs of children with complex developmental differences. Poor design could shift additional pressure onto schools, health services, and families, leading to increased stress, inequity, and poorer outcomes for children in their critical early years.”

Prior to the introduction of the National Disability Insurance Scheme (NDIS), systems failed many kids, particularly those in regional areas. The NDIS Early Childhood Approach has enabled some access for children to engage in therapeutic supports, but funding remains inadequate, with workforce shortages and thin markets further impacting access to early supports. Of note, according to NDIA’s data and insights, the average committed annual funding allocated to children aged 0-8 years is $12,652, while the average funding spent for the same age group per year is $8,178. At SWAN, we typically see annual funding allocations for children with developmental delay or autistic aged 0-6 years of $17,000-$23,000, and for autistic kids aged 7-12 years we typically see funding allocations of $5,000-$8,000 per year. For context, funding of $5,000 per year equates to less than 1 hour of therapy per fortnight. Clearly, autistic children are not being ‘over-serviced’, as evidenced by the NDIA’s own data.

Our survey respondents overwhelmingly identified long waitlists, high costs, complexity of service systems, provider shortages, thin local markets (especially outside big cities) and a lack of local, qualified therapists as persistent barriers, as shown in the bar graph below.

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What barriers have you encountered in accessing early supports?

Long waitlists

High costs

No local services

Not autism/disability accessible

Lack of cultural safety

Complexity of systems

Unable to access NDIS

Unable to access diagnosis

Did not encounter barriers

0 50 100 150 200 250 #300

The NDIS Review (2023) also called for clearer early-childhood pathways alongside supports outside the NDIS so families are not left without help.

Only 10.83% of survey respondents reported easy or very easy access to supports, while 84.39% described the process as difficult or very difficult, as shown in the pie graph below.

How easy is it currently to access early supports (0-8yrs)?

Very Easy

Easy 1.6%

9.2%

Unsure

Difficult 44.9%

Very Difficult 39.5%

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Quotes from respondents include:

“Almost impossible.”

“Long wait times and cost prevents many families from receiving supports.”

“Wait lists and cost for diagnosis are prohibitive.”

“If families are able to pay for private assessments, they generally get through the system a lot faster and receive the supports they need.”

Many families endure up to 2—4 years or longer, waiting for basic assessments and access to services, with significant impacts on child development and parental mental health. As shown in the bar graph below, the most common wait time to access support services is 12 to 18 months.

What is the longest you have waited to access services for your child?

Up to 1 month

1 to 3 months

3 to 6 months

6 to 12 months

12 to 18 months

18 months to 2 years

2 to 3 years

3 to 4 years

More than 4 years

Too often, Western Australian families wait 18 months to two years to access a paediatrician, then wait a further one to two years to access formal diagnostic assessment. Families from low socio-economic backgrounds, who are more likely to require diagnostic assessment through the free state-based public health and disability systems, are the most impacted, facing a wait time of four years or longer to access diagnostic assessment for autism. For children where developmental delays or autism were not identified prior to the age of six years, there is currently no or minimal access to funded support through school, and no access to the NDIS without a formal diagnosis.

Current and previous programs aiming to identify and support children with developmental delay and autism have had mixed effectiveness, especially regarding equitable access, individualisation, and meaningful engagement in community and mainstream settings. SWAN’s survey and sector evidence point to both progress and persistent barriers in areas

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such as child and maternal health, primary care, allied health, playgroups, early childhood education, and school inclusion.

Strengths of Existing Programs

The NDIS Early Childhood Approach (ECA) has allowed some children to receive early supports without a formal diagnosis, enabling family choice and control in accessing therapies and inclusion supports. Particularly for children and families in many regional and remote communities, NDIS funding has brought access to therapies and support providers which simply did not exist in these communities prior to the rollout of NDIS.

Community health checks, playgroups, and early education have identified developmental differences for many children, especially when local, multidisciplinary teams were well resourced. Some state and regional pilots, and inclusive education initiatives, model collaborative, strengths-based inclusion in mainstream settings, with access to multidisciplinary teams and individual support plans.

Inadequacies of Previous Mainstream Early Childhood Services

Prior to the NDIS, regional Western Australia lacked access to early childhood supports for children with developmental delay and autistic children. Some therapy supports were available at regional hospitals through Primary Health, but there were often gaps of two years or more where there were not allied health professionals available, and when they were, it was common for therapists to be trained in geriatrics, not early childhood supports. The WA State Government provided four hours of early intervention therapy per week to diagnosed autistic children up to their sixth birthday, however it was common for there to be no supervising psychologist overseeing the regional early intervention therapy program for six months to two years at a time, and many regional families struggled to access suitable therapy assistants to deliver the program. There was also the Helping Children With Autism program (replaced by NDIS), which was typically insufficient to meet needs, though was more flexible in enabling families to purchase equipment and assistive technology than NDIS is for this age group.

Inadequate Medicare Supports

The Medicare rebate for autism diagnostic assessment includes additional barriers that are not required for diagnosing other disabilities. In order to access the Medicare rebate for autism diagnostic assessment, referral by a Paediatrician or Psychiatrist is required. Given that the typical wait time to access a Paediatrician in WA is 12 months to in excess of two years, this additional barrier increases wait times to access Paediatrician support for other conditions, while further delaying access to early childhood supports. For low socio-economic families, the wait time to access supports is typically doubled, due to wait times of a further 12 months to two years to access diagnostic assessment through the public system.

The Better Access Initiative (Mental Health Care Plan) is only available to eligible people to access a maximum of 10 individual Psychology sessions per year. Children are typically only allocated an initial six sessions, with no extension to the maximum of 10 per year, despite the fact that six sessions barely allow time for the clinician to build rapport with the child. The Medicare rebate is also too low, with some families being asked to pay gap fees as high as $200 — completely out of reach for low-income families and families with multiple children with developmental delays and disability.

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The Chronic Condition Management Plan allows a maximum of five individual allied health sessions per year, if the patient meets the eligibility criteria. Again, there is often a gap fee to be paid, and there are insufficient sessions available to meet the needs of children with developmental delay and disability.

Ongoing Barriers and Inequities

Access to timely, individualised support is highly inconsistent, with families in regional, remote, and lower-income areas continue to report extremely long waitlists, inadequate local allied health professionals, and significant costs. Programs often require a diagnosis for entry, delaying access to supports and increasing family stress. Child and maternal health nurses and GPs often lack training in neuro-affirming, trauma-responsive, or culturally safe practices, resulting in missed opportunities for early identification and support. Many mainstream settings, including early childhood education and schools, lack both mandatory training and stable resourcing to deliver inclusive supports. Workforce shortages, especially for allied health, are acute outside major centres, making access to timely, quality intervention unreliable. Community playgroups and school-based supports are patchy, sometimes reduced to “tick box” exercises or group programs not tailored for individual needs.

Survey Insights on Gaps and Harms

Families describe “falling through the cracks” when programs are generic, diagnosis-dependent, or delivered by undertrained, casual staff. Centralised, inflexible funding and one-size-fits-all models are seen as fundamentally inadequate for children with diverse and changing needs. Many respondents highlighted a lack of culturally safe engagement and almost total absence of supports in some regional and remote areas. Quotes from SWAN’s survey respondents regarding these issues include:

“Early intervention should be as simple for an entry point as possible or disadvantage becomes the deciding and continuing factor. Supports should focus on the child’s abilities and challenges, the value of timely intervention, and the family context, ensuring that no child misses out simply because they fall between systems or lack a diagnosis.”

“Long waitlists, high costs, and the lack of local services make it almost impossible for families in regional areas to access the support they need. Most parents give up before they get the help they’re looking for.”

“Qualified providers with current knowledge vs outdated approaches, available locally with minimal wait lists less than three months.”

“Lots of places have long waitlists, after school spots fill up quickly and Department of Education doesn’t like you getting your child early for appointments or leaving through the day to do appointments and coming back.”

“| work with many parents of children with developmental delays and autism, and the difficulty of accessing supports for their children is a major source of stress, anxiety, and despair for many of these parents. Importantly, the majority of these parents have disabilities or autism themselves, so they are perhaps even more impacted by barriers to support than other parents may be.”

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Recommendations

The Government must:

1. Expand community-based, individualised and group supports with embedded neuro-affirming, strengths-based approaches in all settings - especially regional and remote communities.
2. Invest in comprehensive, mandatory training across all mainstream staff (maternal health, education, allied health) in trauma-responsive, neuro-affirming, and culturally safe practices.
3. Secure stable funding and workforce development strategies to ensure availability and continuity of allied health and inclusion staff, particularly in underserviced areas.
4. Co-design all reforms with families, autistic people, and professionals to ensure relevance, safety, and equity at every stage.
5. Reform Medicare to increase allied health rebates, increase claimable sessions, and improve equity of access to diagnostic assessment.

Identify equity and intersectional issues, in particular, children who identify as First Nations and culturally and linguistically diverse

First Nations (Aboriginal and Torres Strait Islander) and Culturally and Linguistically Diverse (CaLD) children and families often have support needs and preferences shaped by cultural, community, and language contexts.

Families in regional and remote areas, First Nations communities, culturally diverse families, and low-income households experience compounded barriers. Families in regional and remote communities face well-documented barriers to accessing services (e.g. workforce shortages, limited providers, higher costs). They often rely on creative or community-based solutions to meet their support needs. ‘Thriving Kids’ must invest in place-based, culturally safe, community-led supports.

The need for culturally appropriate supports was clearly articulated in responses to our survey:

• 68.53% of survey respondents stated that it is ‘very important’ for ‘Thriving Kids’ to address the needs of First Nations children and families, with a further 17.83% stating that it is ‘somewhat important’.
• 72.03% of survey respondents stated that it is ‘very important’ for ‘Thriving Kids’ to address the needs of CaLD children and families, with a further 17.13% stating that it is ‘somewhat important’.

Respondents were emphatic that a one-size-fits-all model would leave many communities behind. ‘Thriving Kids’ must invest in attracting First Nations, bilingual and CaLD workers to deliver culturally appropriate, locally available early childhood supports. Some quotes from survey respondents include:

“Well educated in all the areas identified in the previous page. Desire to connect with local community AECG in areas to support First Nations children and families. A desire to listen first before actioning. Culturally responsive training and working alongside a local AEO/First Nations community member.”

“These would need to have a strong understanding of the needs of children, families, carers and their community, across intersections of identity. Trauma-informed,

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flexible, free and accessible, and culturally safe services make for high-quality supports. They need to focus on and work with the strengths of children, and be neuro-affirming so as to protect against internalising negative self-stigma. Co-designed services that are created and delivered with people with lived experience and their families and carers would be best. There should also be specific services developed and delivered by Aboriginal communities and Culturally and linguistically diverse communities.”

“Families not wishing to access the service if it is not culturally safe/responsive and the community in the Country it is being delivered in has not been consulted.”

“ALL children deserve to thrive, and their needs be supported in all of their natural settings. Thriving kids needs to be mainstream, accessible and funding access needs to rolled out particularly to NFP services who are already supporting community needs. Thriving kids should be a NFP approach, and enhance, collaborate and extend - rather than replace - existing services, supported playgroups and early intervention and care services.”

“Person-centred, strength-based perspective of whole of family support not just child, wrap around services available on the ground, taking into account demographics, location, family situation, cultural awareness and practices and in some communities being aware and keeping in mind trauma history of families and children and providing cultural workers to walk alongside families.”

Lorelei and Gerardo’s evidence to the Disability Royal Commission exemplifies some of the additional discrimination and barriers faced by First Nations, CaLD and LGBTQIASB+ families in trying to access early childhood supports for their children.

Regional, Remote and Very Remote Communities

Children and families living in regional, remote, and very remote communities consistently face much greater barriers to timely, appropriate support for developmental delay and autism, as highlighted in SWAN’s survey. Long waitlists for paediatricians, allied health, and therapies, often exceeding 12-18 months ,are typical, and many families are forced to travel long distances or pay significant out-of-pocket expenses for even basic assessments or Ongoing supports. Several respondents described the complete absence of local services and the inadequacy of outreach models that amount to “tick box exercises for their funding rather than a proper locally embedded service to the community”.

Survey respondents strongly emphasised that Thriving Kids must move beyond centralised, block funded and one-size-fits-all models. They called for locally based, free supports that are delivered by skilled, trauma-informed professionals with an understanding of the unique challenges faced by rural and remote families. Recommendations include investing in stable, community-based services, employing and training local staff, embedding cultural safety for First Nations families, addressing social isolation, and ensuring service flexibility so families are not forced to disengage after negative or unsuitable experiences. As one respondent put it:

“Rural and remote communities suffering further indignities from lack of supports, care from community members who should care, lack of resources and trained staff… low income families and poor socioeconomic families including First Nations missing out and not receiving services, missed diagnosis, and children … families let down and feeling abandoned - this happens already in remote communities.”

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 17

Survey responses clearly demonstrate that children and families in regional, remote, and very remote communities face unique and compounded barriers to accessing timely and appropriate supports for children with developmental delay. 89.86% of respondents stated that it is ‘very important’ for ‘Thriving Kids’ to address the needs of children and families in regional, remote and very remote areas. A further 6.29% stated that it is ‘somewhat important’.

Maci_and Georgina’s evidence to the Disability Royal Commission demonstrates the significant barriers and delays to accessing early childhood supports experienced by children in regional and remote communities who currently have access to the NDIS. Even though Maci was in the NDIS Early Childhood approach, the NDIS knocked back two requests for needed support because of that classification. Georgina also said it was hard to find an Early Childhood Partner in regional Australia. When she asked for a year of Auslan training by telehealth, the NDIS approved only ten weeks. This is the same pattern we heard again and again in our survey - families in regional and remote areas face thin markets, short-term or partial approvals, and long waits to find anyone to deliver support. It backs our call for local, ongoing, free supports run by people who know the community, with interpreters and communication supports as standard.

Addressing the Needs of Low Socio-Economic Families

Low socio-economic families face particularly acute challenges in accessing timely and appropriate supports for their children with developmental delay or autism. Survey responses reveal that high out-of-pocket costs, gaps in available public services, and long waitlists place pressure on families who may be unable to pay for private assessment or therapies. Many parents report going into debt or forgoing essential supports, while others are limited by transport, work obligations, and systemic complexity. As one respondent stated:

“We went through all our savings and safety net, took out loans to access assessments and therapies etc. | have not been able to work for a year!”

Families also noted that services set up for “universal” or “foundational” access do not reach those most in need without adequate investment in community-based options and practical financial support. Waiting for a diagnosis or sufficient NDIS support can take years, further disadvantaging children during their most critical developmental periods. Another survey respondent observed:

“Almost 9 months and thousands of dollars out of pocket for OT, speech therapist, psychology, and paediatrician assessments before | could even apply for funding”

and

“It’s easy IF you have the funds to pay for therapy yourself!! Trying to get financial assistance to access early intervention is difficult and waitlists are WAY too long.”

Equitable access to ‘Thriving Kids’ must address these realities by ensuring all supports are free or low-cost, locally available, and tailored to family circumstances. Structural reforms should focus on reducing administrative complexity, proactively engaging low-income families, and guaranteeing that financial hardship is never a barrier to early intervention. As one survey respondent cautioned:

“Children will miss out on receiving the help they require, particularly in regional areas [referring to the additional cost of geographic distance]”

and another said,

“Families won’t be able to access supports locally, families won’t be able to afford supports.”

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 18

85.71% of survey respondents stated that it is ‘very important for ‘Thriving Kids’ to address the needs of children from low-income households, with a further 9.41% stating that it is ‘somewhat important’.

Other issues highlighted in both our survey and in the Disability Royal Commission report including making interpreters and translated information standard; covering travel/parking where distance and cost are barriers; and funding local outreach so help reaches families who cannot travel.

Identify gaps in workforce support and training required to deliver Thriving Kids

SWAN’s survey and community consultations reveal systemic gaps in the workforce needed to deliver the ‘Thriving Kids’ program, with the most acute shortages in regional, remote, and very remote areas. Families consistently report long waitlists for paediatric, allied health, and therapy services, with many communities lacking any locally based supports. Respondents highlight that:

“qualified providers with current knowledge vs outdated approaches, available locally with minimal waitlists less than three months,” are essential - but remain out of reach for many communities. Outreach models are seen as inadequate and sometimes amount to “tick box exercises for their funding rather than a proper locally embedded service to the community”.

Survey responses emphasise that mainstream and community workers, including child health nurses, educators, primary care staff, and allied health professionals, often lack critical training in autism-affirming, neurodiversity-affirming, trauma-informed, culturally safe, strengths-based and family-centred practice. “It is vital that all staff have mandatory training in trauma informed care, neuro-affirming practice, and inclusive approaches - not compliance or behaviourist methods,” one respondent noted. Community members also recommended specific training in cultural safety, especially for those working with First Nations and CaLD families, and additional investment in recruiting, supporting, and retaining a diverse local workforce.

Unregulated or underqualified staff pose significant risks, particularly when working with young children aged 0-8 years. Respondents fear a future “where untrained people state what supports children need instead of consulting with the health professionals who actually provide the services” and warn of “unregulated staff taking advantage of the system”. To address these gaps, SWAN and survey participants recommend rigorous reform, including funded and ongoing professional development, stable employment pathways for local practitioners, strong links with disability-led organisations and peer expertise, and minimum staffing benchmarks that guarantee access regardless of postcode or family background. Only a well-supported, well-trained workforce can deliver on the promise of Thriving Kids equitably and safely for all children and families. AHPRA regulate paediatricians, doctors, nurses and most allied health professionals, with Speech Pathologists regulated by Speech Pathology Australia.

Our survey respondents echoed the calls from previous Inquiries, SWAN State and Commonwealth submissions and the National Best Practice Framework for Early Childhood Intervention to grow supply and quality: protect supervision and mentoring time; pay for time to plan with families and teachers; and make neuro-affirming, trauma-responsive and culturally safe training mandatory across health, education and community.

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 19

To address the extensive workforce shortages, the Government must invest in increasing the paediatric, psychiatric and allied health workforces. This can be achieved by:

• Reducing the cost of studying qualifications in the fields with workforce shortages.
• Increasing university places available to study these qualifications.
• Extending access to university study for these qualifications to campuses outside the metropolitan areas, thus encouraging regional and remote students to undertake these qualifications and service their local communities.
• Increase access to TAFE placements for Certificate IV in Allied Health Assistance.
• Incentivise allied health workers to relocate to or service regional and remote communities, by offering to:
  • Clear HECS debts for servicing regional and remote communities for a minimum period (eg. 3-5 years)
  • Subsidise relocation costs.
  • Provide free or subsidised housing in regional and remote communities
• Consider blended, fast-tracked and traineeship options for building the necessary workforce.

It is important to note that there is not currently sufficient workforce to enable successful and effective rollout of any ‘Thriving Kids’ programs of support and building the workforce would entail significant investment in training over at least five years.

Independent labour-market and system data show that the allied-health roles most critical to early intervention-occupational therapists and speech pathologists-have been in persistent shortage from 2021-2024, with psychologists also assessed as in shortage in 2023-2024 (Jobs and Skills Australia, 2024). The NDIS Review similarly warns that thin markets are a persistent feature of the disability support sector, recommending active market monitoring, provider panels for allied-health in small and medium rural towns, and a provider-of-last-resort policy to protect access where markets fail.

Demand is already substantial - as at 30 June 2025, there were 173,465 children under nine with active plans and 23,402 children supported through Early Connections in that quarter (NDIA Quarterly Report, Q4 2024-25). NDIS current access constraints are evident in public wait-time data - 4,228 children on Western Australia’s speech pathology waitlist with a median wait just over 11 months (Parliament of Western Australia, 2024), and ~9,800 children on the metropolitan Child Development Service waitlist (ABC News, 2024)- indicating limited capacity even before any transition to foundational supports.

Given typical training pipelines — Occupational Therapy and Speech Pathology commonly via a four-year Bachelor’s or two-year Master’s (eg. Curtin University; Speech Pathology Australia) and Psychology requiring a minimum six-year sequence to general registration (Psychology Board of Australia, 2025) new workforce supply cannot be produced quickly, so a multi-year (25-year) workforce build is the realistic minimum (aligning with placement and supervision constraints).

This is especially salient as the Commonwealth’s ‘Thriving Kids’ initiative is a $2 billion commitment over five years commencing 1 July 2026 ($400 million per year, split between eight states and territories) - without parallel, targeted workforce investment, the risk is simply moving queues rather than reducing them (Best Practice Framework for Early Childhood Intervention - Theory of Change Background Paper).

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 20

Mainstream services, including teachers, early childhood educators, healthcare and mental health care workers require mandatory training in:

• Identifying developmental delays and neuro-developmental differences
• Trauma-responsive practice
• Making appropriate, neuro-affirming and strengths-based accommodations to equitably include children with developmental delay and disability
• Culturally safe practices

Training and resources must be co-developed with people with disability, First Nations and CaLD communities.

Further to training, services must be audited for quality assurance, with service users (not nominated by the service provider) interviewed by quality auditors.

Draw on domestic and international policy experience and best practice

Australia’s new National Best Practice Framework for Early Childhood Intervention provides rigorous, contemporary guidance - drawing on domestic and international policy experience - that should be foundational for the design and delivery of the Thriving Kids program. Mirroring international shifts toward family-centred, strengths-based, and culturally safe supports, the Framework includes clear universal principles: rights-based, relationship-based, strengths-based, and ecologically grounded services. It mandates practices that promote participation, inclusion, and diversity, underpinned by the human rights of children, people with disability, and First Nations peoples, consistent with the UNCRC and UNCRPD.

Key elements of best practice endorsed in Australia and internationally include embracing neurodiversity, providing tailored and flexible services in everyday community settings, and ensuring multidisciplinary teams collaborate with families as equal partners. Echoing survey and sector evidence, the Framework emphasises support that builds children’s and families’ capabilities, not “fixes” or masks difference, and respects diversity in culture, language, and function. It highlights the need for policy, funding, and system reform that removes barriers - especially for families in regional, remote, and low socio-economic areas, as well as First Nations and CaLD children. Ongoing training in trauma-informed, neuro-affirming, and culturally safe practice is essential, as is co-design with lived experience at all stages.

Implementing ‘Thriving Kids’ in line with the Framework and global best practice will require integrated and community-based delivery, outcome-focused planning, embedded cultural safety, and robust workforce development. Surveillance or deficit-based models - such as behaviourist or “compliance” approaches - are neither consistent with international evidence nor accepted by the community. Instead, the approach must be strengths-based, accessible, and fully inclusive, actively advancing the rights and wellbeing of all children and families.

Survey respondents told us that ‘Thriving Kids’ should be:

“Free, available everywhere, inclusive, neuro-affirming, trauma-informed, culturally safe and locally available.”

“Community groups being able to consult with allied health to support and include children with diverse abilities in community groups and sporting groups and individuals and education.”

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 21

“Supports for families not eligible for NDIS supports. Need to be individualised and built on strengths, not on deficit or diagnosis.”

“Thriving Kids needs to be about empowering parents to understand and support in the way their child needs it.”

“Neuro-affirming, culturally sensitive, trauma informed, kids-friendly, positively educating the public about neuro-affirming views.”

“Individualised support available for kids in their local community that is neuro-affirming, strengths-based and culturally safe.”

“Quality services in Thriving Kids would be timely, accessible, and family-centred… services would be individualised, recognising that every child develops differently, and flexible enough to adapt to changing needs.”

“Supports need to be individually tailored to each child and their families’ needs. A one size fits all approach will not work.”

SWAN believes that it is important to follow the recommendations in Australia’s National Best Practice Framework for Early Childhood Intervention to work with families, respect each child, focus on everyday settings, and show if help is working. Australia should be building on programs that already work in each state and territory (as identified by users, not Government) instead of duplicating them, and make sure First Nations and CaLD families help design and run local services (Disability Royal Commission, 2023).

Identify mechanisms that would allow a seamless transition through mainstream systems for all children with mild to moderate support needs

Families describe navigating current systems as ’waging a war.’ Information sharing is poor, transitions are abrupt, and cliff-edge cut-offs (age 6 or 8) leave children unsupported. Continuity and coordinated planning are essential.

SWAN do not support ‘Thriving Kids’ as the only early childhood support option for children with moderate support needs. The proposed supports in ‘Thriving Kids’ are inadequate for this cohort, and will result in poorer outcomes and older children, adolescents and adults requiring substantially higher supports. Children with moderate and high support needs are more appropriately supported by the NDIS.

To enable a seamless transition through mainstream systems for children with low (mild) support needs, it is essential for Thriving Kids to bridge services across early childhood, school, community health, and the NDIS using clear referral pathways, integrated planning, and wraparound communication. Survey respondents stressed that transitions must be family-driven, responsive to the child’s needs, and not disrupted by bureaucratic handoffs or rigid eligibility criteria. As one parent wrote:

“A bridge between no help and NDIS”

and another:

“Well coordinated evidence-based services and supports that are accessible to children and families in a timely manner… layers of support… continuity of care where trusting relationships can be made. Services needed to be integrated and pathways clear”.

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 22

Families and professionals noted that successful transitions require multi-disciplinary teams working within the child’s natural environments, the ability for kids and families to move fluidly between levels of support as needs evolve, and the inclusion of all relevant allied health, educational, and family supports. Embedded key worker or case coordinator models, school-based allied health staff, and flexible intake and re-entry processes were recommended.

“OT, speech, psychology appointments all school/medical centre based… school districts having teams of OT, speech, physiologists to identify children in need and deliver group or individualised therapies… provide professional learning to school staff. Therapist being attached to hospitals for parent child appointments”.

Equity concerns were also dominant in survey responses - seamless transitions cannot occur if workforce shortages, gaps in service, or cultural barriers persist. All mechanisms should ensure First Nations, CaLD, regional, and low socio-economic families are actively and appropriately engaged, with peer navigators or community liaisons to assist families through transitions at every stage.

‘Thriving Kids should prioritise delivery of supports to children not eligible for the NDIS — children without a diagnosis who have developmental delays and/or support needs, and children with conditions like ADHD, Dyslexia, Dysgraphia, Dyscalculia, Dyspraxia, Selective Mutism, Specific Learning Disorder, Language and Communication Disorders and other conditions. Critically, diagnosis must not be required in order to access support through ‘Thriving Kids’. It’s also important that ‘Thriving Kids’ provide supports to children waiting for disability diagnostic assessment. If ‘Thriving Kids’ programs are provide free of charge and to a high standard of support, applications for NDIS access will naturally reduce. No one wants to navigate the NDIS unless there is no other option to access the support needed.

Many of the respondents in our survey strongly identified that they want simple, clear pathways to support, as outlined in the National Framework, such as:

• One place to start (call, click, email or walk in).
• One main contact for each family.
• One plan that follows the child, so families don’t keep repeating their story.
• When services change, introduce the family and share the plan so help continues.
• Check-ins at 2, 6 and 12 weeks to make sure support actually starts and keeps going.
• No or low cost, with travel help for regional/remote families and interpreters when needed.

Importantly, the support must be local, holistic, individualised and flexible. Advisors and supporters must have local expertise of the mainstream and disability support services available to the child and family, and an understanding of the barriers experienced in that community. A one-size-all approach will leave too many children and families falling through the gaps. Early Childhood support services must be flexible enough to increase support during crises (eg. Homelessness, domestic violence, parent/carer ill health) and where parents may not have capacity. It’s common for the parents of children with developmental delay and autistic children to have undiagnosed disability, and support for parents must be inclusive, accessible, and flexible to meet their needs. It’s also common for there to be multiple children in a family with developmental delay and/or autistic. In such cases the needs of the family must be considered holistically, with one main contact for the family as a whole.

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 23

Community Concerns

The South West Autism Network (SWAN) survey reveals deep and widespread concern within the community about the direction and potential impact of the proposed ‘Thriving Kids’ program. Families, professionals, and autistic people worry the initiative risks replicating the worst features of past systems, with rigid eligibility, underfunded services, poorly trained staff, and the erosion of individualised, neuro-affirming, and trauma-informed support. There is overwhelming fear that more children will “fall through the cracks”, lose access to essential therapies, or receive only generic, group-based interventions that fail to meet their needs or actively cause harm. Many survey respondents saw the announcement of ‘Thriving Kids’ as a:

“…cost-cutting and cost-shifting exercise, moving young children with low budget NDIS Plans across to “sub-par” group-based programs with out-of-pocket expenses, rather than the individualised therapy supports required.”

Community members consistently state that confidence in ‘Thriving Kids’ is very low - only a small fraction of survey respondents expressed trust that the proposal will deliver timely, affordable, and appropriate support. As per the pie chart below, 84% of survey respondents are ‘not confident’ or ‘not at all confident’ that ‘Thriving Kids’ will provide free, timely or affordable and appropriate supports for kids in local communities.

How confident are you that ‘Thriving Kids’ will provide free, timely or affordable & appropriate supports for kids in your community?

Unsure 9.2%

Not confident 20.5%

Not at all confident 63.5%

They warn that:

“if not designed well, the Thriving Kids program could create several risks and harms. The biggest concern is that it may be used to reduce or remove NDIS access for children who still need individualised supports, leaving families without the level of help required… supports may be too generic, failing to meet the specific needs of children with complex developmental differences.”

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 24

One parent captured the distress by noting,

“Not only do | think it will make waitlists longer, | doubt support will be tailored for the individual or neuro-affirming. We will be going backwards.”

There is very significant and justified concern that rural, remote, First Nations, CaLD, and low-income families will be disproportionately disadvantaged. Survey respondents described long wait times, inaccessible services, and a lack of trained staff as already endemic — stating:

“Rural and remote communities suffering further indignities from lack of supports, care from community members who should care, lack of resources and trained staff… low income families and poor socioeconomic families including First Nations missing out and not receiving services, missed diagnosis, and children being placed on ‘Thriving Kids’ so NDIS is not supporting them so government NDIS funding is cut even if they require higher level of supports… families let down and feeling abandoned - this happens already in remote communities.”

Our community strongly reject deficit-based models, stigmatising language, and the use of ABA or compliance-based approaches. 74.9% of survey respondents said that the language ‘mild to moderate developmental delay and autism’ used to describe the target cohort for ‘Thriving Kids’ is not appropriate, as shown in the pie graph below.

Do you think the language ‘mild to moderate developmental delay and autism’ is appropriate?

Unsure 10.3%

Yes 14.8%

No 74.9%

Survey respondents described this language as:

“Disgusting. Stigmatising. Alienating.”

“The autistic community need to be consulted on the preferred language — terms like mild and moderate are not preferred terms used.”

“Mild to moderate are not terms used to describe autism.”

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 25

“Its a spectrum. Its also fluid and changing in complexity. Autism is autism and no matter where you are on that day, you deserve to have access to care needed.”

“You can’t be mildly pregnant nor can you be mildly autistic. You are autistic or not, however you support needs may be different from others.”

“No such diagnosis.”

“By whose definition? Autism support needs can fluctuate. Labelling like this is dangerous.”

“STOP stigmatising disability and AUTISM.”

“The terminology for mild/moderate autism is offensive to the autistic community and harmful.”

“Autism is a spectrum, not a linear scale. You might experience my autism as mild but my support needs change according to circumstances. Functioning labels are both ignorant and insulting.”

Instead, they are urgently seeking a “neuro-affirming, culturally sensitive, trauma informed, kids-friendly” approach, delivered by skilled, well-resourced local teams who understand family and community context. Above all, the community calls for co-design, transparency, true choice and control, and investment in the workforce and wraparound supports so “no child or family is left behind”. Failure to deliver on these priorities will risk “poorer outcomes, traumatised kids, poorer mental health, more kids falling through the gaps and a generation requiring substantially more support as adults.”

Support for Non-NDIS Eligible Children

There is strong agreement that funded supports must exist outside the NDIS - especially for children with learning disorders (ADHD, dyslexia, selective mutism, etc.) and those who do not meet current eligibility thresholds. 69.86% of survey respondents believe supports outside the NDIS (like those proposed under ‘Thriving Kids’ are needed), while a further 20.55% are unsure. There was strong support (72.13%) from survey respondents that ‘Thriving Kids’ be provided to children with developmental delays and learning disabilities who would not currently meet eligibility criteria for the NDIS, as per the pie graph below.

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 26

Who should ‘Thriving Kids’ support?

Mild to moderate developmental delay and autism 5.6%

None of the above 18.1%

Not currently eligible for NDIS 72.1%

Only 5.6% of survey respondents agreed that ‘Thriving Kids’ should be for children with ‘mild to moderate developmental delay and autism’, and 4.18% felt that ‘Thriving Kids’ should replace NDIS access for this age group. A further 18.12% of survey respondents do not support ‘Thriving Kids’ at all.

Nearly all believe that children with permanent, significant disabilities (including all autistic children) should not be ejected from the NDIS and forced into generic programs. 92.47% of survey respondents are ‘very concerned’ or ‘somewhat concerned’ that ‘children who are currently supported by the NDIS could lose access to necessary supports under Thriving Kids’, as shown in the pie graph below.

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 27

How concerned are you that children who are currently supported by the NDIS could lose access to necessary supports under ‘Thriving Kids’?

Not concerned 5.1%

Somewhat concerned 15.1%

Very concerned 77.4%

Survey respondents told us:

“Children have been given this [NDIS] support for a reason, take it away and they are going to need more supports than ever. Early intervention is everything and as low income earners there is no way we could have provided these supports to our son and he would not be where he is today without them.”

“If kids get moved from NDIS to Thriving Kids, how will this save money? The only way to save money is to not spend it. So | am expecting the kids to be missing out on supports. Especially in rural/regional where supports are already scarce and alternatives not available.”

“Parents of autistic children are already under incredible amounts of stress. Taking away their children’s tailored allied health supports for a community based program is already causing a lot of anxiety. The government needs to do better! They should be ashamed of themselves for thinking they can cut budgets with this program.”

“NDIS should be extended. This Thriving Kids thing sounds more like conversion camp or some other ABA based approach. The level of ignorance around the neurodivergent community in this country would be hilarious if it weren’t so dangerous.”

“Thriving Kids must complement the NDIS, not replace it - children with permanent disabilities cannot be pushed into a generalist program that was never designed to meet their lifelong needs.”

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 28

High Levels of Community Concern and a Call for Genuine Co-Design

83.98% of survey respondents told us that the Government has not adequately engaged with families, autistic people and disability organisations in designing ‘Thriving Kids’. Many described the announcement as rushed, confusing, and disconnected from the realities of daily life with disability.

Some comments from our community include:

“No, | don’t believe the Government has engaged adequately with families, autistic people, or disability organisations in designing Thriving Kids. Families and advocacy groups have consistently asked for meaningful co-design, but many feel their voices have been sidelined or tokenised in the process. Without lived experience guiding the design, there’s a risk the program will repeat the same barriers we already see, limited access, underfunding, and services that don’t match children’s real needs. Genuine consultation means listening to parents, autistic people, and disability organisations from the start, not just presenting a finished model. At this stage, that level of engagement doesn’t appear to have happened enough.”

“No consultation, no input from families of children with disabilities or organizations who support people with disabilities or people with disabilities themselves. NO discussion around how it is going to work.”

“Thriving Kids was dropped on the community like a bomb. No consultation, no codesign, nothing.”

“The program was prematurely announced by the government. They clearly did not engage very well, if at all with the autistic community, considering the words mild and moderate were used. These are not terms used in a clinical setting and shows a lack of basic research to understand that autism levels are about levels of support required. Not how autistic you are. Everyone was caught off guard and it has only increased stress and worry for parents who are trying to do their best for their children, so that they can live life.”

“The voices of those with lived experience have been sidelined, leading to a model that risks missing real needs and creating further harm rather than genuine support.”

‘Thriving Kids’ must be fully co-designed, co-developed and evaluated with people with disability, families and our representative organisations.

Risks and Harms If Poorly Designed

Our survey identified that families are most worried about being pushed from individualised supports into a generic program and losing access to help they already have. In particular, 92.47% of respondents said they are very or somewhat concerned that children currently supported by the NDIS could lose access under ‘Thriving Kids’. Confidence in the reform is low overall, with 84% “not confident” or “not at all confident” that Thriving Kids will provide timely, affordable and appropriate supports. Families also reject deficit language and oppose compliance-based approaches, reporting that these cause harm and increase masking (e.g., 74.9% said the “mild/moderate” labels are not appropriate; 86.71% rated neuro-affirming workforce training as very important; 88.50% rated trauma-informed training

SWAN Submission to the Government Inquiry into ‘Thriving Kids’ Page | 29

as very important). These results show a clear pattern of risk if ‘Thriving Kids’ is implemented without strong safeguards for individualised supports and workforce quality.

The National Framework supports these community concerns. It says practitioners must uphold children’s rights to participation and non-discrimination, work in family-centred and strengths-based ways, and provide support in everyday settings (home, ECEC, school, community). It also cautions that “more support is not necessarily better-over-servicing can be harmful,” which speaks directly to worries about high-intensity or compliance-driven models and group-only offers that ignore individual needs (Best Practice Framework: Theory of Change Background Paper, 2025).

Survey comments also point to the risk that regional, remote, First Nations, CaLD and low-income families will be left further behind if the program is not properly funded and staffed locally. The framework is clear that Governments must identify workforce competencies, ensure a sufficient supply of skilled practitioners, and adapt services to local circumstances-otherwise access and quality will remain unfair by postcode (Theory of Change Background Paper).

Common themes in our survey data warn of serious risks:

• Loss of access for children who would currently be eligible for the NDIS - particularly those with permanent disability,
• Increased mental health impacts on families and children.
• Worsening inequalities for regional, remote, First Nations, and low-income families.
• More children “falling through the cracks.”
• Workforce gaps and capacity issues leading to diluted or tokenistic supports.
• Over-burdened mainstream services, especially schools and early childhood educators.
• Risks of trauma and masking where programs are ABA-based or deficit-focused.

SWAN are deeply concerned that introducing ‘Thriving Kids’ to redirect children with “mild to moderate developmental delay and autism” from NDIS will further dilute access to needed supports, by duplicating administrative costs and leaving too many children ineligible for either NDIS or ‘Thriving Kids’.

Our survey respondents warned of:

“A lost generation of autistic kids.”

“Making our children think that there is something wrong with them… more Suicide, burn-out, breakdown of current infrastructure particularly around mental health and young people.”

“Group-based therapy is best when individuals have received some level of individual services… The drive for group-based therapy in this population will be detrimental to outcomes.”

Community Vision for Effective Supports

Our survey identifies a clear blueprint for what will work: neuro-affirming, trauma-informed, culturally safe supports that are free or low-cost, available locally, and built around each child and family. Families want skilled, local teams who know the community, practical help in everyday settings, and the ability to combine group and individual supports as needs change over time. They also want continuity with the NDIS where disability is permanent —

with no changes to eligibility criteria, and better options outside the NDIS for children who currently miss out.

The National Framework points in the same direction. It calls for rights-based, family-centred and strengths-based practice, delivered through integrated teams that share power with families, adapt to local context, and work across home, ECEC, school and community. It expects governments to set and monitor workforce competencies and to commission to best practice so that access and quality do not depend on where a family lives. The outcomes it targets-child participation and agency, secure relationships, confident families with positive support networks, and caring, culturally safe communities-are exactly what families describe as success.

Survey respondents provided a blueprint for what good policy and programs should look like:

“Neuro-affirming, trauma-informed, culturally safe and locally available. Equitable, individualised supports.”

“FREE services, individualised, local, allied health and group-based supports for kids.”

“Supports and services for those who would not otherwise be eligible for NDIS… Kids who are missing out getting access to inclusive, neuro-affirming supports.”

“Integrated into schools or group programs to build community and maximise resources and connection.”

“A whole family approach–assessment, intervention, education for family and siblings.”

Our Recommendations

In light of the issues detailed above, SWAN makes the following recommendations:

1. Protect Individualised NDIS Supports and Eligibility

• Guarantee that all children with significant or permanent disability maintain access to individualised NDIS supports, with no changes to eligibility criteria.
• Ensure that no child currently supported by the NDIS loses their funding or services during the rollout or pilot phase of ‘Thriving Kids’.
• Target ‘Thriving Kids’ programs to children with developmental delays and differences that do not meet NDIS eligibility criteria.

2. Pilot ‘Thriving Kids’ Programs

• Ensure that all services and programs are fully co-developed with people with disability and families, thoroughly tested and independently evaluated.
• Pilot sites must be located in each state and territory, covering regional and remote locations as well as metropolitan areas.
• ‘Thriving Kids’ programs must be sufficiently flexible to enable holistic support for children and families, responsive to periods of crisis and higher support needs.

3. Workforce Development and Training

• Address critical workforce gaps by investing in local training, recruitment, professional development, and retention strategies, including incentives for allied health staff to work in rural/regional areas and long-term career pathways, such as:
  • Reducing the cost of allied health qualifications
  • Expanding places available in allied health qualifications, and improve access to qualifications outside of metropolitan areas.
  • Increase availability of Certificate IV in Allied Health Assistance courses, particularly in regional and remote areas, and include the course in the free TAFE training program.
• Incentivise allied health professionals to work in regional and remote areas by:
  • Erasing HECS/HELP Debts if workers remain in regional and remote areas for a minimum period of time (eg. 3-5 years).
  • Subsidising cost of relocating.
  • Providing low cost or free housing
• Make workforce planning integral to program rollout, with measures to ensure supervision, mentoring and continuity of skilled staff for community-based delivery.
• ‘Facilitate mandatory training for all ‘Thriving Kids’ workers in trauma-responsive, neuro-affirming and culturally safe practices. Workers must be able to identify developmental differences and delays, and provide appropriate accommodations and supports to meet children’s learning and development needs.

4. Equitable Access, Regional & Remote Inclusion

• Prioritise free, locally available supports in all communities, with investment in place-based, culturally safe service models for regional, remote, and very remote areas.
• Require that Government funding allocations for ‘Thriving Kids’ reflect the additional costs and workforce challenges associated with geographic distance and thin markets, ensuring equity of access regardless of postcode.

5. Local Navigation and Key Worker Roles

• Establish locally-based ‘Thriving Kids’ navigators (key workers) in every community, especially regional and remote areas, to help families access, coordinate, and understand available supports, diagnoses, and funding options.

6. Neurodiversity-Affirming, Trauma-Responsive Support

• Ensure programs are neurodiversity-affirming, trauma-responsive, and strengths-based. Reject generic, deficit-based, or behaviourist programs including compliance-focused models or Applied Behaviour Analysis (ABA) -based approaches; workforce training in neuro-affirming and trauma-responsive care must be mandatory for all staff.

7. Culturally Safe and Inclusive Practice

• Partner closely with Aboriginal community-controlled organisations to deliver supports in culturally safe ways so First Nations families can access help without fear of child removal or judgement.
• Make ‘Thriving Kids’ supports accessible to families from culturally and linguistically diverse backgrounds, including translated materials, bilingual workers, interpreters, and culturally competent service design.

8. Empower Families Through Ongoing Support

• Provide ongoing practical help for parents and carers, including skills-based coaching, peer networks, and flexible options for both individual and group support to build family strength, confidence, and capability.

9. Genuine Co-Design in All Reforms

• Legislate and enforce safeguards for genuine co-design with people with disability, families, First Nations, CaLD communities, and local organisations at every stage of Thriving Kids rollout and oversight.

10)Integrated and Joined-Up Services

• Design Thriving Kids services to work in close partnership with local health, education, disability, and community organisations, building wraparound supports that prevent children and families from falling through service gaps.
• Address the funding gap in the reformed Information, Linkages and Capacity building (ILC) program, leaving children 0-8 years and families without ILC support from early December 2025.

11)Seamless Transitions and Age Continuity

• Ensure all children can continue receiving support beyond age nine, providing clear, seamless transition pathways so no family is left unsupported as a child ages out of ‘Thriving Kids’.
• Prioritise practical pathways between early childhood, school, and health systems; streamline referrals and planning, and provide each family with one main contact and plan throughout their journey.

12)Funding and Service Delivery

• Commit to all therapies and supports provided through ‘Thriving Kids’ being free of charge, accessible locally, and supported with Medicare rebates for diagnostic assessments, practical travel assistance for distance, and ongoing review of hidden costs faced by families in rural, remote, and low-income settings.

• Address inequity in access to Medicare rebate for autism diagnostic assessment, which currently requires referral by Paediatrician or Psychiatrist, whereas the Medicare rebate for other disability diagnostic assessments is available via GP referral.
• Avoid block funding and centralised allocation; maintain family choice and control in provider selection, and ensure local flexibility alongside rigorous quality standards.

13)Early Identification and Universal Access

• Remove diagnostic barriers - children should be able to start support as soon as needs are identified, including those with learning disorders and developmental delays, without waiting for formal diagnosis.
• Make resources plain-language, neuro-affirming, co-developed with disabled people, First Nations, and CaLD families, and relevant to each local area.

14)Transparent Reporting and Evaluation

• Frame children as an investment, not a burden; transparently publish program outcomes - wait times, participation rates, and community impact - by region, to drive continuous improvement and public trust.

Conclusion

The South West Autism Network (SWAN) urges decision-makers to ensure that the ‘Thriving Kids’ initiative delivers meaningful inclusion, equity, and real support for all children with developmental delay who are currently falling through the cracks - particularly those in regional, remote, and underserved communities. The persistent barriers - long waitlists, geographic isolation, insufficient cultural safety, reliance on outdated and harmful intervention models, inadequate workforce and funding - must be addressed through bold, co-designed reforms informed by the lived experience of disabled Australians, their families and disability-led organisations.

This submission makes it clear that meaningful, lasting change will only be achieved by investing in neuro-affirming, trauma-responsive, community-driven supports available free of charge to every child and family that needs them, regardless of diagnosis or postcode. The future success of the ‘Thriving Kids’ program depends on strong protection of individualised NDIS access, robust regional and cultural engagement, stable and skilled workforces, and ongoing co-design, transparency, and accountability.

All children deserve the chance to thrive. SWAN calls on all stakeholders to honour the principles of inclusion, participation, and respect for diversity by enacting the recommendations outlined throughout this submission. Only then will Australia create a future in which no child or family falls through the cracks — with equitable access regardless of geographic location.

Contact

CEO: Nick Avery

Email: info@swanautism.org.au Web: www.swanautism.org.au