3rd October 2025
+61 2 6277 4145 Health.Reps@aph.gov.au
Contents
Introduction
Lived Experience Australia Ltd (LEA) is a national representative organisation for Australian mental health consumers and carers, families and kin, formed in 2002. Our ‘friends’ include more than 12,000 people with lived experience of mental health concerns across Australia. This includes lived experiences with all parts of the mental health care system, NDIS, psychosocial disability support outside the NDIS, PHN commissioned services, public and private service options, and service provision across urban, regional, rural and remote Australia. All members of our Board and staff have mental health lived experience as either a consumer, family/carer/kin/supporter, or both.
Lived Experience is core to our advocacy, recognising that the impacts of policy and practice are felt not only by individuals, but also by families and whole communities. We advocate for effective policies and systemic change to improve mental health care and psychosocial disability support services and support across the lifespan, across the Australian health and social care system, including within State and Territory jurisdictions.
We welcome the opportunity to provide our feedback to this consultation on the Thriving Kids Program.
Background & Purpose of this Consultation
The Australian Government is restoring the National Disability Insurance Scheme (NDIS) to its original purpose—supporting people with permanent and significant disability —and ensuring the Scheme remains sustainable.
Thriving Kids will focus on identifying developmental concerns earlier and establishing a national system of supports for children aged 8 and under with mild to moderate developmental delay and autism, and their families. Children with permanent and significant disability will continue to be supported through the NDIS.
The program will be delivered by scaling and building on existing mainstream and community services that can better support families and children in settings they already are connected to. This includes child and maternal health, GPs, playgroups, early childhood education and care and schools, as well as digital and phone-based supports.
The Government will work with state and territory governments and experts to finalise the design and implementation arrangements for Thriving Kids. Design is being informed by the findings of the Independent Review into the NDIS, national consultation on Foundational Supports held at the end of 2024 and continuing community consultation across multiple jurisdictions. Minister Butler will establish the Thriving Kids Advisory Group.
It is expected the Thriving Kids program would rollout in phases. The first services are expected to be available from 1 July 2026 and would continue to ramp up over 12 months.
Our Response
Preliminary Statement
The below includes my brief introductory comments to the Parliamentary Committee Hearing held 3 October 2025, plus further comments following that appearance before the Committee.
My name is Sharon Lawn and I am the Executive Director of Lived Experience Australia, a national 100% lived experience advocacy organisation representing people across the lifespan who experience mental health and psychosocial disability challenges, and also their families, carers and chosen supporters and kin. The combined voice is important to us because no person exists in isolation from their community, relationships and connections to others. The impacts and consequences (both negative and positive) of their efforts to navigate and access systems, services and supports are usually felt by the individual and those closest to them. Our national ‘friends’ network comprises >12,000 people with diverse intersecting experiences and needs (including those arising from neurodiversity), with mental health challenges, marginalization, stigma and discrimination often at the core of those experiences. We are an associate member of the Australian Associate of Disability Organisations (AFDO).
Getting Thriving Kids right is so important to us and the people we represent because so many have co-occurring needs due to neurodiversity which may never have been recognised, diagnosed, and met with the right supports or indeed any supports when they were children. This has meant many have endured multiple experiences of adversity, exclusion and marginalization, trauma and abuse, and so forth at crucial developmental stages in their lives. This has included in education, employment, social and community connections, housing, and so forth. The ‘conditions’ for then experiencing mental health challenges, drug and alcohol issues, justice system issues, family violence, homelessness, stigma and self-stigma, unemployment and under-employment, isolation and loneliness, poverty etc are clear. These ‘conditions’ mean a cycle of perpetuating disadvantage is created which, for many, is overwhelming and difficult to
overcome, and which could have been prevented or ameliorated if accessible, effective and skilled supports at crucial points during childhood had been in place to help them thrive.
What I’m trying to explain is that early response failures = more complex problems for adolescence and adulthood and increase demand for services such as mental health services. Stigma and discrimination etc become established and entrenched experiences with consequences that can be life-long.
Kids with mild to moderate concerns are the very ones who are at great risk of being missed, misdiagnosed, overlooked, and bounced around systems and services.
I have heard from several ‘friends’ connected with Lived Experience Australia who have children struggling to receive support for autism, ADHD, and so forth. Ironically, their parents often have their own mental health and neurodiversity experiences (many unrecognised and unsupported). Adversity can be intergenerational. Distress caused by attempting to navigate siloed systems is a common experience. They want a better life for their children than the life they experienced as children. For some whose children experience suicidal thoughts or attempts, or serious self-injury/self-harm (ie. behaviours of concern), they have been met by systems and services that can be fragmented, siloed and dismissive at best, and blaming, coercive and traumatising at worst.
Our hope for Thriving Kids is therefore than it provides holistic supports for children, that it works to address systems siloes; and that it recognises the many ‘conditions’ that contribute to the longer-term trajectory for these children being a negative one or a thriving one.
Further comments in response to questions from the Committee:
Families often know well ahead of health professionals, early educators and other service providers, that their child may have developmental issues. If the Committee is considering a broad and universal approach to assessment of children once they are 3 years old, we are concerned that this may be too late for some children. For families that experience greater marginalisation and less engagement with any services, the greatest opportunities to ‘see’ them, and by default their children, are likely to be when their child is younger than 3. By that age, some families may already be largely invisible to services where previously there was at least some contact with maternal and infant healthcare. This invisibility is likely to increase until children are enrolling in pre-school and primary school; and many such families may not access formal childcare centres either, where early identification of children’s needs may occur.
A well thought out communication campaign is needed to raise awareness among the diverse range of service providers who come into contact with families of young children who are or may be eligible for the Thriving Kids program. This communication is also vital for families themselves and for raising community awareness, more broadly.
A further important component of the communication plan is for health and early education service providers to be proactive in engaging with families. Similar to approaches to other issues, such a family violence, smoking cessation, cancer screening, service providers should be trained to create space for families to raise concerns. Asking families as a standard, rather than waiting for families to raise concerns, would be useful given issues of shame, stigma and self-stigma, discrimination, racism, fear and so forth may mean families remain silent. Some families may have previously experienced trauma as part of their contact with services; hence, issues of trust must also be considered with skill and care, as part of a trauma-informed approach.
Families experience significant burden and burnout as part of their attempts to seek support. This can take months and years in some cases. They experience many challenges in obtaining referrals, long wait-times to
then see specialists and other service providers, and they may incur significant costs in doing so. For these reasons, access to support favours families with greater resources, literacy and agency. Inequity in access to Thriving Kids is therefore a real concern; and inadequate safeguards could widen this inequity.
Lived Experience family peer support is valued and valuable for many groups that experience system barriers. Having others who understand from a lived experience perspective can build knowledge, trust and connection for families at all points of engagement with the Thriving Kids initiative.
The Committee asked whether there is evidence for the long-term consequences of social determinants of health issues and failures of systems to recognise and support people earlier. We offer evidence from one specific field here: People who experience incarceration.
The Australian Institute of Health and Welfare (AIHW) report on disproportionate rates of disability within prison systems is one example that suggests clear inequity over time.
Disability prevalence increases with age
The prevalence of disability among prison entrants is higher in each age bracket than in the general community:
- Of those aged 25–34, 1 in 14 (7.1%) people in the community, and 1 in 3 (36%) prison entrants reported a disability.
- Of those aged 35–44, 1 in 11 (9.0%) people in the community, and 2 in 5 (39%) prison entrants reported a disability.
- Of those aged 45–54, 1 in 6 (16%) people in the community, and half (49%) of prison entrants reported a disability (ABS 2019).
Contact
We thank you for the opportunity to put our views forward. We wish you well with the next steps and would be pleased to contribute our Lived Experience perspectives to any future discussions about this important topic.
Your sincerely
Sharon Lawn
Professor Sharon Lawn, Executive Director
Email: redacted
Mobile: redacted