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Siblings Australia Inc

Submission: Inquiry into the Thriving Kids initiative

October 2025

Executive summary

Siblings Australia welcomes the opportunity to contribute to this Inquiry into the Thriving Kids initiative. For over 25 years, we have been the only national organisation dedicated to supporting the brothers and sisters of people with disability, chronic illness, and mental health conditions.

Sisters and brothers are often a child’s first and most important play partners, and who can go on to become lifelong allies, and natural safeguards. Yet their role and their needs remain largely invisible in service systems. Without recognition and support, siblings face higher risks of mental ill-health, educational disengagement, and social isolation. With support, they thrive in their own right and play an indispensable role in scaffolding the wellbeing of their brothers and sisters.

Thriving Kids is a welcome step in recognising that children with developmental delay or autism cannot thrive in isolation. Success depends on addressing family stressors and strengthening protective factors. Sibling support is one of the most powerful, evidence-informed, and cost-effective levers to achieve this.

Independent modelling by Hudson Howells shows Siblings Australia delivers $28 in community benefit for every $1 invested, primarily through reduced healthcare costs, deferred NDIS expenditure, and reduced carer stress. Clearly, sibling support is not simply a cost to be borne - it is a strategic investment in the invisible infrastructure that provides support to people across both the health system and the NDIS.

Our recommendations for the committee are as follows:

Formally recognise siblings as a stakeholder group in Thriving Kids frameworks
Invest in national delivery of sibling support through Siblings Australia’s evidence-informed programs
Embed sibling-focused training in the workforce
Draw on international best practice, including Norway’s sibling entitlement model
Ensure equity by tailoring sibling supports for First Nations, CALD, and regional/remote families

Amira was four and loved building towers out of colourful blocks. Her brother, Sami, was three and had a developmental delay. Sometimes Sami watched but wasn’t sure how to join in.

One afternoon, Amira noticed Sami sitting quietly beside her. Instead of telling him what to do, she began to copy his small movements - stacking a block the way he did, humming the same little tune. Sami’s eyes lit up. Slowly, he reached for another block and handed it to Amira. She smiled, and together they began a wobbly, wonderful tower.

Their mum watched from the couch. She knew that play is one of the most powerful ways young children learn - but she also saw something she herself couldn’t create. Amira’s closeness in age made her the perfect guide. Her playful mirroring invited Sami to explore, connect, and learn on his own terms.

In that simple game of blocks, a sister’s love became her brother’s bridge to learning.

Background

Siblings Australia recognises the importance of Thriving Kids supporting integrated journeys for children and families. We recognise that the government is focusing on children as the first tranche of foundational supports because the evidence points to the importance of early intervention. The system created will need to be fluid, with a continuum of integrated supports. For families, that looks like strong enablers empowered to allow children to thrive embedded within the communities that they live in.

It is important for members of this inquiry to recognise that while some supports do currently exist, they are not necessarily funded to the level that allows them to scale and benefit all families. Despite the reach that Siblings Australia has achieved to-date and with limited resources, there is still much more to do. This cannot be reliant on funding that is project-based or short-term. Organisations like Siblings Australia cannot attract and retain quality staff, nor plan for the longer term, nor deliver benefits for the community and people with disability, without funding certainty.

The reach the organisation has been able to achieve in recent years has been in large part due to the willingness of staff and volunteers to go above and beyond for siblings and families. This is not sustainable in the long term. Quality, proven services with wide benefit should be embedded in the ecosystem.

Siblings Australia background

Siblings Australia’s vision is to ensure siblings’ needs are acknowledged in policy and practice; and our mission is to make sure siblings are seen and supported.

For much of our 25 year+ history, we were a volunteer organisation. However, Siblings Australia received its first significant funding through a grant in the Information Linkages and Capacity Building program (ILC) through the Department of Social Services. This funding began in 2020.

This funding was initially for three years and was extended by one year due to the pandemic.

This funding allowed us to expand our reach and services, and provide consistency of support to the organisations with whom we partner across the country (500 in the final year of the grant).

In the next round of ILC funding, Siblings Australia found out that the main project we had applied for and on which our future services were reliant had been unsuccessful. We had, however, received funding for a lesser amount in a consortium arrangement with a service called Kaleidoscope Focus.

While this provided some funding for Siblings Australia, the bulk of this funding went to the consortium partner.

This has meant we have been reliant on cash reserves and the reforecasting of our current ILC grant to deliver services that are increasingly in demand.

At the high point, we employed 10 staff (approximately 5 FTE). At present, we are operating with 8 staff and an FTE of just over 2.0.

To deliver sustainable impact nationally, however, even our “high point” of employee numbers was not sufficient to sustainably service the demand across the country. Proper servicing of the sibling community to allow for thriving families requires not only centralised staff but also additional community-based employees. The need for additional services online to provide support for regional and remote families also needs to be factored into future service delivery models to ensure reach and equity across the community.

In addition to staff, we are supported by a skills-based board of 6 members; and two consultative committees made up of adult and child siblings (with 12 members in total). Of the 25 staff, board, and committee members, 76% are siblings; and 16% are parents/caregivers.

The importance of integrated sibling supports

Supporting siblings is not only the right thing to do for families: it is also fiscally responsible. Siblings are frequently the longest-lasting relationship in the life of a person with disability, and when they are informed, resilient, and supported, they are better able to play both a supporting and safeguarding role. This reduces pressure on formal systems by helping their brother or sister to navigate services, advocate effectively, and maintain long-term stability in care arrangements.

For people with disability, the sibling relationship often becomes the cornerstone of continuity, stability, and advocacy across a lifetime

Siblings can be:

Informal carers who provide physical, emotional, and logistical support
Advocates who assist in navigating services, policies, and systems
De-facto or actual guardians, especially when parents age or pass away.
Trusted allies who promote rights-based outcomes and social inclusion.

Conversely, when siblings are overlooked, the costs compound. Many experience what is known as “glass child syndrome” — growing up in the shadow of a sibling’s high needs and so whose on needs are ‘looked through’. Without support, they face increased risk of mental health challenges, disengagement from family, and strained relationships. The ripple effects of this disengagement impact not only the siblings themselves, but also their brother or sister with disability, and the broader service system that depends on their informal support.

Investment in sibling support is both preventative and enabling. It is a smart policy lever that strengthens families, reduces service demand, and improves the life trajectories of both siblings and people with disability.

Poor mental health outcomes not only affect siblings personally but also undermine their capacity to provide informal support, ultimately increasing reliance on the NDIS and other government agencies for funded supports. In the worst-case scenario, siblings themselves end up requiring mental health supports through the system.

By investing in targeted sibling support programs, such as peer connections, mental health resources, skills and training, government can prevent downstream costs. Early, low-cost interventions build protective factors for siblings, reduce the risk of future mental health service use, and enhance siblings’ capacity to contribute positively to their families’ support networks. Every dollar spent on siblings is multiplied in its impact: strengthening family units, reducing service demand, and improving outcomes for people with disability while easing pressure on the NDIS and other government funded supports.

Eli was five, and his sister, Leila, was seven. Eli didn’t use many words, and sometimes the adults around him struggled to know what he meant.

One morning, Eli tugged at his mum’s sleeve and pointed toward the window. ‘Ba! Ba!’ he said urgently. Mum looked outside, puzzled. Do you want your ball, Eli?’ she asked, scanning the yard. Eli grew frustrated and shook his head.

Leila wandered in, watching closely. ‘He doesn’t mean ball,’ she explained. ‘He wants his blue blanket—the one with the stars. He calls it ‘Ba.’ She ran to fetch it, and Eli hugged it tightly, his face softening.

Their dad smiled, relieved. ‘Leila, you always know what he’s saying.’

Leila shrugged. ‘I just listen a different way.’

For Eli, playtime and comfort often depended on Leila’s special understanding. While adults heard confusion, Leila heard her brother’s voice loud and clear.

Siblings, close in age and heart, can sometimes be the best interpreters, opening doors to connection that others cannot.

Thriving Kids, while framed strongly around allied health and early intervention, was also pitched by Minister Butler as a way of helping ‘children and their families thrive, without needing to rely on the NDIS for every support’. This implies family support is integral, not incidental, though the detail to date has leaned toward therapy/clinical systems rather than family/peer models; and the emphasis is implied rather than explicit.

If Thriving Kids focuses too narrowly on therapy, the broader ecosystem supports for families and siblings could be undercooked. The NDIS Review also cautioned against a ‘therapies-only’ model, stressing that ‘peer and family supports are critical for resilience and participation.’

Peer programs and family education (like Siblings Australia’s work, or parent training programs for developmental delay) show measurable improvements in overall wellbeing and system navigation. These programs also deliver cost offsets (eg, reduced demand for formal services, improved school attendance, lower long-term health system use).

Family and peer supports are core to the philosophy of Foundational Supports and explicitly recognised in the NDIS Review. We recommend that the focus on the whole-of-family, social model foundation recommended in the NDIS Review remains central in the planning of Thriving Kids, rather than pulling too strongly toward a health/clinical paradigm (Medicare, allied health, diagnostic eligibility). Siblings are not ‘add-ons’ for families: they need to be recognised as core actors in resilience, prevention, and safeguarding.

Siblings Australia: National, online, proven

Siblings Australia was founded and remains headquartered in South Australia. Board and consultative committee members live in South Australia, Queensland, New South Wales, Victoria, and Western Australia, with members in both metropolitan and regional areas. Casual staff are engaged in WA, SA, QLD, NSW, and Victoria.

In addition to the in-person programs we deliver (eg, SibWorks for children and SibConnect for adults), we also recognise the importance of online delivery. As such, we have online peer supports for teenagers and adult siblings; and offer counselling via telehealth (privately paid). We offer future planning tools through our website, based on a person-centred, rights-based approach. Parenting and professional development resources are available online. We also have plans to expand our offering to children in the online space if funding and resources are available.

As the only sibling-specific organisation operating nationally, we rely on a partnerships model, working closely with a wide range of organisations to deliver resources, support, and training to their communities. These can be delivered through a variety of channels best suited to the communities of these organisations. Some are delivered by Siblings Australia directly while for others, we provide the training, resources, and support; and organisations deliver them to their communities - organisations like Headspace.

As well as having an unfunded social impact researcher (pro bono) in our team, we also partner with a range of universities and research institutes to look at both broader sibling issues, and the efficacy of the supports we provide. We are cognizant that while there is enormous benefit we derive from having an engaged researcher to assist our work, this is entirely reliant on the goodwill of this researcher with no funding directed to her position.

Siblings Australia has successfully partnered with multiple levels of government (including state agencies, the NDIA, and the Department of Social Services) to successfully deliver targeted sibling support initiatives.

As the nationally recognised leader in this space, Siblings Australia is uniquely positioned to codesign, implement, and scale state-based foundational supports for siblings, in partnership with local service systems and lived-experience voices.

Evidence-based information and resources for parents

Early intervention works best when parents are equipped with tools for the whole family. Too often, programs stop at the child with delay, leaving siblings as an afterthought. Yet siblings are uniquely placed to support developmental progress through play, shared social learning, and modelling.

“Siblings Australia helps me understand I am not alone and there’s many siblings out there going through very similar things I am experiencing. This has helped me to be more confident in myself and my brother who I love but got embarrassed of most the time we were out.” - Sibling, 15-years old, South Australian metropolitan

Resources for parents must:

Provide clear, age-appropriate information that helps siblings understand what is happening
Validate siblings’ emotions - confusion, guilt, resentment, pride—and equip parents to support them.
Recognise that engaged siblings are not only beneficiaries but also agents of inclusion and development for their brother or sister

Siblings Australia’s resources, including SibWise, all operate within these parameters.

SibWise is an online learning program for parents and carers, helping them better understand the experiences of children who have a brother or sister with disability. Through practical tips, real-life scenarios, and tools, it equips parents to support sibling wellbeing, strengthen family relationships, and build resilience.

Other programs offered by Siblings Australia — such as parenting webinars and presentations — are informed by research as well as the lived experience of brothers, sisters, and other family members who have shared their experiences with our staff.

Effectiveness of current and previous programs

Existing programs for developmental delay and autism have improved early identification and intervention. Yet the majority remain child-focused, with little recognition of sibling dynamics.

Siblings Australia has filled this critical gap by:

Supporting over 20,000 siblings in the past four years, through more than 500 partnerships nationally
Delivering age-specific programs: SibWorks (children), TeenSib (adolescents), SibConnect (adult peer support), SibPlan (future planning), and SibSupport (counselling)
Providing professional education for thousands of clinicians, educators, and service providers
Demonstrating national scalability, with staff across SA, WA, QLD, NSW, and Victoria

The impact of our work is shown in the following statement from a teen sister:

Being a sibling has shaped nearly every part of my life. Since my sister was born, our family has faced many challenges trying to get her the care and support she needs. … Now, 12 years later, she has only just received a provisional diagnosis of cerebral palsy. I have a really special connection with her - I even learned key word sign to help her with her language and communication.“ - Sibling, 14-years old, New South Wales regional

These examples show how siblings step into advocacy, communication, and care roles — and this often happens organically, without preparation or support.

Thriving Kids can address this by embedding sibling support as standard practice.

Equity and intersectionality

Equity requires recognising the additional layers of responsibility and disadvantage for some sibling groups:

First Nations siblings often carry cultural and caregiving responsibilities beyond their years
CALD siblings may act as interpreters or cultural brokers, bridging language and systems gaps

Regional and remote siblings face isolation and reduced service access, magnifying their emotional load

When we were operating with additional resources, Siblings Australia had begun piloting culturally adapted sibling resources, including in-language support, to ensure siblings were not left behind. This work has been put into abeyance as we work to keep core services operational, but could be resumed and expanded with appropriate resourcing. Tailoring support for diverse families must be central to Thriving Kids.

Workforce support and training

Mainstream professionals, who appear to be central to the delivery of Thriving Kids (GPs, child health nurses, allied health, educators) interact with siblings daily but may feel unequipped to respond. We have had professionals report that they are uncertain what to say to siblings, lack resources to offer, or are unaware of pathways for sibling support (or the need for such supports). Families tell us that it is clear that the focus of mainstream professionals often does not look peripherally to consider the family unit as a while.

Siblings Australia’s training programs address these gaps, enabling practitioners to:

Identify signs of sibling stress or anticipatory grief
Provide sibling-appropriate information
Refer families to peer groups, counselling, and evidence-based resources

We have worked with educators and psychologists to prepare a schools-based support guide for teachers and other school staff; and the Department for Education in South Australia has created an internal resource with our guidance on sibling support. But the needs of siblings are often invisible and not considered.

Embedding sibling-informed practice in Thriving Kids would transform the frontline experience for families and needs additional resourcing to become known across all components of the ecosystem.

Siblings Australia has the much-needed knowledge and skills and importantly, the capability to scale up.

International policy experience: the Norwegian model

Norway offers a compelling blueprint. Since 2019, under the Norwegian Health Personnel Act, siblings of children with long-term illness are legally entitled to:

Information about their brother or sister’s condition
Follow-up support from the health system

This law rests on a simple recognition: neglecting siblings undermines child health outcomes. Family stress rises, treatment adherence falls, and recovery is jeopardised.

By positioning siblings as stakeholders in care ecosystems, Norway has strengthened both health and social outcomes.

Thriving Kids has an opportunity to adapt this approach. If its aim is to reduce future NDIS demand, it must include siblings as protective factors, not invisible bystanders.

Sibling Support: Norway vs. Australia

Norway (since 2019)	Australia (current)
Siblings legally entitled to information & follow-up support	No formal entitlement or recognition of siblings
Support integrated into healthcare system	Supports fragmented across NDIS, health and education
Recognises siblings as stakeholders in care ecosystems	Siblings seen as ‘extras’, not central stakeholders
Reduces family stress, improves treatment adherence	Family stress high, system pressure increases

Conclusion and recommendations

Families trust relationships, not systems. At present, the NDIS is seen as complex and unreliable; and while trust is higher with Medicare, it is viewed as episodic and medical, not developmental.

Moving from one system to another, even from low-trust to higher-trust systems, is not simple. Thriving Kids must build trust by partnering with organisations, like Siblings Australia, that already hold community confidence.

Our lifespan model ensures siblings are supported from childhood through adulthood, avoiding the ‘cliff edges’ that too often characterise system transitions. This continuity directly supports Thriving Kids’ aim of seamless pathways.

Thriving Kids is an opportunity to reshape how Australia supports children with developmental delay and autism. It must avoid narrow, medicalised models and instead build an ecosystem that recognises families as a whole.

Siblings are not optional extras. They are first play partners, lifelong allies, and natural safeguards. Supporting them is one of the most cost-effective strategies to improve outcomes for children, reduce family stress, and ease pressure on health and disability systems.

We recommend that Thriving Kids:

Recognise siblings formally as a stakeholder group
Invest in Siblings Australia to deliver scalable, evidence-based sibling programs nationally
Embed workforce training to equip mainstream professionals
Adapt international best practice, including the Norwegian sibling entitlement model
Tailor supports for equity, particularly First Nations, CALD, and regional/remote siblings

“The most important thing I have learnt is having a community — the importance of having a village behind you is ultimately what gets you througpP. … Knowing I have Siblings Australia to turn to when I need it is comforting. I am very grateful to be part of this community.”

Supporting siblings is not a cost. It is a strategic investment in the invisible infrastructure that sustains the NDIS, strengthens families, and ensures children truly thrive.