C. Survey into the Thriving Kids initiative

Overview

1.1The Committee conducted a public survey to gather views and experiences from parents, carers, service providers and community members about the availability and effectiveness of the current services available to support children with disability, including developmental delay and autism.

1.2The survey comprised of nine questions, each offering respondents a choice from five response options on a fixed scale. The final question in the survey was a free text box, meaning respondents could write anything they wished. The free text box had no character or word limit.

1.3The Committee notes the concerns from many organisations and individuals about the accessibility of the survey, particularly for people with disability, from culturally and linguistically diverse backgrounds, and Aboriginal and Torres Strait islander communities.

1.4The Committee notes that there are several types of surveys which could have been administered as part of this inquiry. Given the relatively short timeframe for this inquiry the Committee resolved to use a self-administered questionnaire which was designed to gain a quick snapshot about the current support services available to help children with disability including developmental delay and autism. This style of survey offered several advantages including saving time; reduced interviewer bias; provided greater anonymity and privacy; respondents were able to complete questionnaires at their own pace and preferred time; could be delivered via multiple channels; and was suitable for geographically dispersed or remote populations.

1.5The survey was designed to provide contextual insights to complement written submissions and other evidence gathered for this inquiry; it was not intended to inform broader policy development.

1.6The Committee acknowledges that engaging in public consultation processes may be especially difficult for parents and carers of children with autism and developmental delays, given the additional responsibilities and complexities they often manage. The Committee expresses its sincere appreciation to those who took the time to contribute, providing valuable insights that have helped inform the Committee’s broad understanding of the issues under examination.

1.7Participation in the survey was voluntary. The Committee received 1,194 responses in total.

1.8The survey was launched on 21 August 2025 and remained open for 50 days. The survey closed on 10 October 2025.

1.9The survey was accessible on the Committee’s website, via the homepage for the inquiry.

1.10The Committee published a media release for the inquiry which included a description and link to the survey, as well as the closing date. The media release was published on the Parliament of Australia webpage and social media.

Breakdown of Key Statistics

Summary of results

1.11Participants were requested in question 3 to specify their geographical base (remote, rural, regional, or metropolitan).

Ease of access to information about available supports

Source: Survey on support services for people with disabilities

1.12Respondents were asked to rate how easy or difficult it was to find information about the supports available to help children with disability including developmental delay and autism. A rating of 1 indicated they found it very difficult to find the supports available, while a rating of 5 indicated they found it very easy to find the supports available.

1.13Most people who answered the survey said it was very difficult or difficult to find information about available supports.

1.14Almost a third of people said it was very difficult to find information about available supports (326 respondents).

1.15A further third of people said it was difficult to find information about available supports (346 respondents).

1.16Almost a third of people said that they did not find it particularly difficult or particularly easy to find information about available supports (336 respondents).

1.17Far fewer people said it was easy or very easy (51 respondents) to find information about available supports.

1.18Just over 1 in 10 people said they found it easy to find information about available supports (135 respondents).

1.19Just 1 in 25 people said they found it very easy to find information about available supports (51 respondents).

Ease of understanding the information received

Source: Survey on support services for people with disabilities

Figure C.2 are responses to the question: Was the information you received easy to understand? 172 respondents said “very difficult”; 360 said “difficult”; 403 chose the “neutral” option; 195 said “‘easy”; and 64 pick “very easy” as their answer.

1.20Respondents were asked to rate how easy they found it to understand information they received about supports available to them. A rating of 1 indicated they found it very difficult to understand the information they received, while a rating of 5 indicated they found it very easy to understand the information they received.

1.21Many respondents said that they found information difficult to understand or very difficult to understand (173 respondents). Close to half of survey respondents chose one of these ratings.

1.22A third of people said it was difficult to understand the information they received (360 respondents).

1.23Over 1 in 10 said that it was very difficult to understand the information they received (173 respondents).

1.24Over a third people did not find it particularly easy or particularly difficult to understand the information they received (404 respondents). This was the most popular answer to this question.

1.25Only about 1 in 5 people found the information easy to understand or very easy to understand (64 respondents).

1.26Sixteen per cent of people found it easy to understand the information they received (195 respondents).

1.27One in 20 found it very easy to understand the information they received (64 respondents).

Explanation of decisions and outcomes

Source: Survey on support services for people with disabilities

Figure C.3 is a snapshot of the responses to the question: Were decisions and outcomes explained to you? 8% (101) respondents said “always”; 25% (222) said “often”; 453 (38%) responded with “sometimes”; 303 (25%) said “‘rarely”; and 10% (115) survey participants picked “never.”

1.28Respondents were asked to rate how frequently decisions and outcomes were explained to them. Respondents could choose never, rarely, sometimes, often or always.

1.29About 1 in 10 people said that they never had decisions and outcomes explained to them (115 respondents).

1.30About 1 in 4 people said that they rarely had decision and outcomes explained to them (304 respondents).

1.31The most popular answer was that decisions and outcomes were sometimes explained (454 respondents). This represents two-fifths of people.

1.32About 1 in 5 people said they often had decisions and outcomes explained to them (222 respondents).

1.33Almost 1 in 10 people said they always had decisions and outcomes explained to them (101 respondents).

Timeliness of being provided supports

Source: Survey on support services for people with disabilities

Figure C.4 is a captures respondents’ responses to the question: How long did it take before being provided supports? Only 17 survey participants said supports were provided “within a week”; 126 said “a month”; 425 respondents said “within six months”; 300 chose the “within 12 months option; 326 responded with “more than a year.”

1.34Respondents were asked how long it took until they were provided with supports. Respondents could choose within a week, within a month, within 6 months, within 12 months, or more than a year.

1.35Very few people were provided supports within a week, about 1 in 100 (17 respondents).

1.36About 1 in 10 people were provided supports within a month (127 respondents).

1.37Over a third of people were provided supports within 6 months (425 respondents). This was the most popular answer to this question.

1.38About a quarter of people were provided supports within 12 months (300 respondents).

1.39Almost a third of people were provided supports after more than a year (327 respondents).

Travelling interstate or using telehealth for services

Source: [Source]

Figure C.5 are responses to the question: Did you need to travel interstate or use telehealth for some or all services. 552 respondents said “no”; 546 said “yes- to having had to access telehealth”; 17 respondents said they had to travel interstate to access services; 79 participants said they had to use both telehealth and travel interstate to access some or all services.

1.40Respondents were asked if they needed to travel interstate or use telehealth for some or all services. Respondents could answer that they did not need to use telehealth or travel interstate, that they did need to use telehealth (but not travel interstate), that they needed to travel interstate (but they did not need to use telehealth), or that they needed to use telehealth and also needed to travel interstate.

1.41Almost half of people said they did not need to travel interstate or use telehealth (552 respondents).

1.42Almost half of people said they needed to use telehealth, but did not need to travel interstate (546 respondents).

1.43Almost 1 in 10 people said they needed to travel interstate and also needed to use telehealth (81 respondents).

1.44Only 1 in 100 people said they needed to travel interstate but did not need to use telehealth (17 respondents).

Satisfaction with quality of support

Source: [Source]

Figure C.6 shows responses to the survey question: How satisfied are you with the quality of support received? A total of 95 respondents selected “not satisfied at all”; 156 respondents chose the “slightly satisfied option”; 362 survey participants were “moderately satisfied”, while 358 expressed being “very satisfied”; 223 selected level 5 or the “extremely satisfied” option. The average satisfaction rating was 3.38.

1.45Respondents were asked how satisfied they were with the quality of support they received. Respondents could answer on a scale from 1 to 5, where 1 is very dissatisfied with the quality of support they received, and 5 is very satisfied with the quality of support they received.

1.46Almost half of people said that they were satisfied or very satisfied with the quality of support they received.

1.47About a third of people said that they were satisfied with the quality of the support they received (358 respondents).

1.48Almost 1 in 5 people said that they were very satisfied with the quality of the support they received (223 respondents).

1.49A third of people said that they were neither satisfied or dissatisfied with the quality of the support they received (363 respondents).

1.50About 1 in 10 people said that they were dissatisfied with the quality of the support they received (157 respondents).

1.51About 1 in 10 people also said that they were very dissatisfied with the quality of the support they received (95 respondents).

Appropriateness of current supports to meet individual or family needs

Source: [Source]

Figure C.7 captures the responses to the question: How well do current supports meet the needs for you or your family? A total of 113 respondents selected level 1 i.e., “not at all well”; 252 selected “slightly well”; 319 chose the “moderately well” option; 289 said “very well”; and 221 selected extremely well.

1.52Respondents were asked how well the current supports meet the needs of the person answering the survey and their family. Respondents could give a rating from 1 to 5, where 1 was not at all, and 5 was very well.

1.531 in 10 people said that current supports did not meet their needs at all (114 respondents).

1.541 in 5 people said that current supports mostly did not meet their needs (253 respondents).

1.55Almost a third of people said that current supports neither were nor were not meeting their needs (319 respondents).

1.56Almost a quarter of people said that current supports were mostly meeting their needs (289 respondents).

1.57Almost 1 in 5 people said that current supports were meeting their needs very well (221 respondents).

Change to required supports over time

Source: [Source]

Figure C .8 shows responses to the question: “Did the support you required change overtime and require separate services or programmes?” A total of 48 respondents said their support needs had “significantly decreased”; 77 said they had “somewhat decreased”; 196 reported that their support needs had “stayed the same.” Conversely 297 respondents said their support needs had “somewhat increased” and 314 said they had “significantly increased.” A further 262 respondents indicated that they had required separate services or programs overtime.

1.58Respondents were asked if the support they required changed over time and required separate services or programs. Respondents could answer that their support significantly decreased, somewhat decreased, stayed the same, somewhat increased, significantly increased or required separate services.

1.59Only a few people said that the support they required significantly decreased – just 1 in 25 (48 respondents).

1.60Similarly, only 1 in 20 people said that the support they required decreased somewhat (77 respondents).

1.61A minority of people, less than 1 in 5, said that their support needs stayed the same (196 respondents).

1.62The majority of people, almost three quarters, said that their support needs increased or needed separate services.

1.63A quarter of people said their support needs increased somewhat (297 respondents).

1.64Slightly more than a quarter of people said their support needs increased significantly (314 respondents).

1.65Just over 1 in 5 people said that they required separate services (264 respondents).

Obtaining inclusion support in early childhood, preschool, or primary school sectors

Source: [Source]

Figure C .9 shows responses to the question: “How easy or difficult has it been obtaining inclusion support for your child in either the early childhood, preschool or primary school education sectors?” 532 respondents selected “very difficult” as their preferred option; 312 selected “somewhat difficult”; 205 selected “neutral”; 103 selected “somewhat easy”, while 42 selected “very easy” as their response. The average rating was 2.00 indicating that most respondents found it difficult to obtain inclusion support within early childhood, preschool or primary education settings.

1.66Respondents were asked how easy or difficult it has been for them to obtain inclusion support for their child in either the early childhood, preschool or primary school education sectors. Respondents could answer on a scale from 1 to 5, where 1 was very difficult and 5 was very easy.

1.67Concerningly, almost half of people answered that it was very difficult to obtain inclusion support (534 respondents).

1.68A further quarter of people said that it was difficult to obtain inclusion support (312 respondents).

1.69About 1 in 5 people said that it was neither easy nor difficult to obtain inclusion support (205 respondents).

1.70Less than 1 in 10 people said that it was easy to obtain inclusion support (103 respondents).

1.71Very few people said that it was very easy to obtain inclusion support, just 1 in 25 (42 respondents).

Summary of themes

1.72As noted above, the final question in the survey was a free text box where survey respondents were asked if there was anything else they would like to share about their experience about support services available to help children with disability including developmental delay and autism.

1.73The following section explores the views of survey respondents who highlighted:

• the complexity of navigating the NDIS, the administrative burden placed on parents and carers, and the emotional toll of acting as case managers
• concerns about inadequate inclusion practices, insufficient staff training, and the risks associated with positioning schools as central hubs for intervention
• concerns that shifting services into schools will reduce choice and control, create service gaps, and rely on under-resourced systems
• the need for individualise supports and neuro-affirming, trauma-informed approaches
• disparities in access to disability support, particularly for families in regional areas, those with lower incomes, and culturally diverse communities
• profound impact of navigating the disability support system on families’ mental health and financial stability
• calls for co-designed reforms, expanded supports, and continuity of care beyond early childhood
• concerns about allegations of misuse of NDIS funding.

NDIS as a Lifeline

1.74A significant number of respondents emphasised that access to the NDIS has been crucial in securing support for children with autism. This includes services such as occupational and speech therapy, psychological sessions, and physiotherapy.

1.75Families report that their children have made substantial developmental progress as a direct result of the support provided through the NDIS.

1.76Respondents particularly value the current NDIS model for enabling choice and control over the services they engage. This flexibility allows parents and carers to select programs that best align with their children’s individual circumstances. The ability to personalise support is seen as essential in meeting diverse and often complex needs.

1.77Survey responses indicate that without the NDIS, many families would face significant financial hardship and debt. Parents and carers express concern that losing access to the Scheme would prevent them from providing necessary support, potentially leading to regression and increased demand for services later in life.

Systemic Barriers and Navigation Challenges

1.78While survey respondents acknowledge the benefits of the NDIS, many report that accessing and navigating the Scheme is often extremely complex. This challenge is experienced broadly across the cohort, including individuals with high levels of education and professional expertise in relevant fields.

1.79Some respondents note that it has taken them years to fully understand or even become aware of the available services. They emphasise that caring for a child with disability is highly demanding, leaving limited time for the research and administration required to effectively engage with the NDIS.

1.80Families frequently take on the roles of case managers, service coordinators, and researchers, with respondents describing system navigation as equivalent to a full-time job. The survey reveals that this added pressure – combined with caregiving responsibilities – can result in significant distress and burnout.

1.81Respondents report significant difficulties communicating with the NDIS, describing the information provided as confusing, incomplete, or poorly conveyed – particularly when program changes occur. Communication via phone and email is slow and challenging, creating additional barriers to accessing and effectively using services.

1.82Inconsistency in decision-making is identified as a major issue. Parents report submitting applications for children with the same diagnosis, only to receive vastly different outcomes. This lack of transparency is a significant source of frustration and fatigue.

1.83Such inconsistency is compounded by the absence of shared definitions for key terms such as ‘child’ and ‘disability’ across different services.

1.84Families consistently report long wait times – ranging from six months to four years – for assessments and therapies, even in urgent cases. Given the importance of early intervention, these delays pose a serious barrier to effective support.

1.85Uneven distribution of services remains a key concern, with some families reporting the need to travel for hours to reach a service provider. The situation is particularly challenging in rural and remote areas. While telehealth appointments are sometimes offered, respondents note that this format is often unsuitable for children with autism.

1.86The Scheme’s inflexibility is also a concern. Families report that children, tweens and teens experience rapid developmental changes, yet the NDIS does not adequately respond to their evolving needs for care and support.

1.87The review process for individual NDIS plans is frequently described as bureaucratic and burdensome. As a result, some families choose to retain their existing plans – even when they no longer meet their needs – rather than face the complexity and stress of initiating a review.

Education System Failures

1.88Survey respondents consistently express concern about the proposal under the Thriving Kids initiative to position schools as the central hub for support and intervention programs.

1.89Many highlight that schools are not adequately equipped to support children with autism. They lack the capacity to provide the individualised assistance these children require, and staff often struggle to identify and manage developmental delays that warrant intervention.

1.90Inclusion practices within the education system are frequently described as inadequate. Teachers, often under-resourced and insufficiently trained, are placed in roles related to special education without the necessary support or expertise.

1.91Respondents also note that knowledge of neurodivergent children among school staff tends to be limited. Where support is available, it is often outdated and not aligned with evidence-based best practices.

1.92Children with autism may engage in masking at school – concealing their challenges to fit in socially. While these struggles often go unnoticed in the classroom, masking can lead to increased emotional strain, with symptoms surfacing more intensely at home. Parents of girls with autism in particular frequently report this behaviour, noting that their children’s difficulties are often entirely overlooked in the school setting.

1.93For some children with autism, the school environment can be a source of trauma. Families report repeated experiences of bullying and discrimination, raising concerns that embedding support services within such settings may not yield positive outcomes.

1.94Group therapy in school settings may not be suitable for all children, with some finding the environment overwhelming or stigmatising. Many respondents emphasised the benefits of home-based therapy, where children feel safer and more receptive, and families can observe and actively participate in the process.

1.95Some children with disability are homeschooled and not part of the mainstream education system. It remains unclear how these families would access support if services were restricted to school-based settings.

1.96While there are cases where school-based support would be beneficial, respondents note that schools are often resistant to integrating external therapists. As a result, parents and carers are required to schedule appointments during school hours, disrupting both education and work commitments.

1.97While some families schedule therapy appointments outside of school hours, accommodating these sorts of arrangements can be challenging. Children may perceive these sessions as additional work, and the timing can be exhausting. As a result, they may struggle to engage meaningfully, which can limit the overall effectiveness of the support.

1.98Respondents acknowledge that attending therapy in childcare or school settings may benefit some cohorts, offering a more natural environment than isolated external appointments. They note that scheduling therapy during school hours can ease the burden of managing appointments alongside school and work commitments. Families emphasise, however, that in-school support must involve a range of specialised professionals, rather than relying on generalist services.

Criticism of the Thriving Kids initiative

1.99Survey respondents expressed several key concerns regarding the Thriving Kids initiative.

1.100A central issue is the proposed shift of support services into the school setting, which respondents describe as under-resourced and lacking adequate expertise. Participation in school-based programs may also be stigmatising and, in some cases, a source of further trauma.

1.101Respondents emphasise that the initiative reduces the choice and control currently afforded to families under the NDIS. It moves away from an individualised approach – widely recognised as the most effective – towards more generic, standardised models of support.

1.102Families also express concern about the lack of clarity surrounding the new program and the transition process from the NDIS. They fear potential service gaps during this phase and highlight the unpredictability of the initiative as a major source of distress, particularly for children with autism who rely on consistency and routine.

1.103Families recommend that announcements regarding changes to the NDIS and the Thriving Kids initiative be more effectively managed and clearly communicated. They emphasise the need for detailed information to help reduce anxiety within the affected community.

1.104Respondents consistently stress that autism is a lifelong condition. Children with autism will grow into adults with autism, and families are uncertain about what support will be available once their children are no longer eligible for the Thriving Kids initiative. Any disruption in services poses a risk of regression.

1.105Some respondents view theThriving Kids initiative as regressive and primarily driven by cost-cutting measures. A key concern is the lack of meaningful consultation with families, communities, and autism specialists. Many argue that greater emphasis should have been placed on co-designing the program with those directly impacted.

1.106Families also raise issues with the language used to describe and promote the initiative. Terms such as ‘mild’ or ‘moderate’ autism are criticised for oversimplifying the complexity and dynamic nature of neurodiversity.

1.107Additionally, respondents highlight that communication around the program has, at times, implied that autism is a condition one may ‘grow out of’. This lack of sensitivity in language has been deeply distressing for many families, who emphasise that autism is a lifelong neurodevelopmental condition.

Importance of Early and Individualised Intervention

1.108Survey respondents consistently highlight the critical importance of early identification and tailored intervention in effectively supporting neurodivergent children. These approaches are viewed as foundational to achieving positive long-term outcomes.

1.109Families strongly reject one-size-fits-all models, describing them as not only ineffective but potentially harmful. Instead, they advocate for maintaining targeted, individualised support that is neuro-affirming and trauma-informed, aligning with best practice principles.

1.110Many respondents describe early therapy as life-changing for their children, emphasising that such support should extend beyond the age of 7 or 8 to accommodate ongoing developmental needs.

Equity and Access Issues

1.111Survey respondents repeatedly highlight the significant difficulties associated with accessing and navigating the NDIS, including long wait times and complex administrative processes, as outlined earlier.

1.112These challenges are especially pronounced for families in regional areas and those with lower incomes, who face additional barriers due to service shortages, geographic isolation, and prohibitive costs.

1.113Cultural and linguistic diversity further complicates access, with families from diverse backgrounds often encountering systemic obstacles and a lack of culturally responsive support.

1.114Respondents also note that conditions such as ADHD and co-occurring diagnoses are frequently under-recognised and under-supported within the current framework, leaving many families without adequate assistance.

Emotional and Financial Toll

1.115Families describe the diagnostic process as both lengthy and expensive, creating significant barriers to timely support.

1.116To avoid extended waitlists, many families opt to pay privately for assessments required to access the NDIS. Some respondents report waiting years before resorting to out-of-pocket funding. During these delays, families must also self-fund therapies to ensure their children do not miss out on critical early intervention.

1.117For families unable to afford private assessments and therapies, the consequences can be severe, with children at risk of experiencing greater developmental delays due to lack of timely support.

1.118Respondents also highlight that Medicare rebates often fall short of covering the full cost of therapy, resulting in substantial out-of-pocket expenses. This creates significant equity barriers, with disadvantaged families at risk of being priced out of essential services.

1.119The current system places a heavy burden on parents and carers, who are often responsible for sourcing, coordinating, and managing their children’s therapies. Many are forced to reduce their work hours to meet these demands, compounding financial stress.

1.120Beyond the financial strain, families report a profound emotional toll from caring for children with a disability within the NDIS. The constant need to advocate for their children and secure appropriate support from the Scheme, is described as exhausting and traumatic, leading to burnout and declining mental health.

1.121Families also report experiences of bullying and feeling dismissed by both the education and health systems. Many describe being forced to repeatedly justify their children’s needs, particularly when symptoms are perceived as mild, resulting in inadequate recognition and support.

1.122Greater support should be provided to parents and carers of children with disability, as well as to siblings who often take on informal caregiving roles. All are significantly impacted and should receive targeted assistance to help manage their responsibilities effectively.

Policy and Advocacy Recommendations

1.123A central recommendation from survey respondents is to preserve and strengthen the support provided through the NDIS, which is viewed as essential for families of children with autism and other neurodivergent conditions.

1.124Families also call for better integration across the health, education, and disability sectors to enable holistic, multidisciplinary support. Stronger collaboration between teachers, psychologists, occupational therapists, speech pathologists, and paediatric physiotherapists is seen as critical to optimising children’s developmental outcomes.

1.125Greater transparency and consistency in decision-making processes are urgently needed. Respondents express frustration with the lack of clarity and fairness in how decisions are made.

1.126The plan reassessment process is frequently described as overly complex and discouraging. Families report that detailed assessments from qualified professionals are often disregarded, highlighting the need for improved recognition of professional evidence in reassessments.

1.127Respondents advocate for NDIS decisions to be transparent, consistent, and clearly linked to the professional evidence provided. This would allow families and practitioners to work collaboratively and effectively to meet individual needs.

1.128Families emphasise that autism is a lifelong condition and should be recognised and treated as such. Support must extend beyond childhood and adapt to changing needs over time.

1.129Many respondents advocate for the inclusion of items such as sensory tools and specialised swimming lessons within NDIS-funded supports. They also call for better integration of mental health social workers, who play a vital role in recognising and addressing the psychological impacts of autism.

1.130The survey reveals a clear need for co-design reforms involving neurodivergent individuals and their families. Respondents stress that lived experience should inform the development of policies and programs.

1.131Finally, families recommend expanding Medicare coverage and foundational supports beyond the age of nine, ensuring continuity of care and access to essential services as children grow.

Concerns About Misuse and Fraud

1.132Some respondents allege instances of potential misuse of NDIS funding, noting that funds may occasionally be directed toward leisure activities or household tasks rather than approved supports.

1.133Concerns were raised about providers inflating appointment costs by exploiting NDIS pricing structures. For example, some families reported that providers adjusted their charges in other areas after travel-related pricing was reduced.

1.134Some respondents called for stricter diagnostic protocols and more rigorous audits to ensure appropriate use of funding, although these views were not universal.