Submission No 109

INQUIRY INTO FOUNDATIONAL AND DISABILITY SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG PEOPLE IN NEW SOUTH WALES

Organisation: Belongside Families Date Received: 18 September 2026

Further submission to the Select Committee on

Foundational and Disability Supports Available for Children and Young People in New South Wales

Submission by Belongside Families

SEPTEMBER 2026

About Belongside Families

Belongside Families is an independent, family-led organisation supporting over 7,000 parents and carers of children with disability, developmental delay, developmental concerns and Autism across 97 New South Wales LGAs.

Our work includes peer support, peer-led parent education, information, navigation and community connection to support families to grow their knowledge and confidence, make informed decisions, navigate systems and feel less alone. Our staff, board and peer workforce bring lived family experience of parenting a child with disability alongside systems expertise.

Every day, families share with us what is helping, the challenges they are experiencing and what would make it easier for their child and family to thrive. Their experiences, alongside our experience delivering peer-led support to families across NSW, are the basis of this submission.

Executive Summary

Belongside Families welcomes the work underway to design and implement Thriving Kids in NSW and the commitment to approaches that are child-centred, family-centred, strengths-based, accessible and connected with the everyday settings in which children and families live.

We also recognise that Thriving Kids has a defined purpose and scope. It cannot, and should not, be expected to meet every need of every child and family.

What matters to families is how this works in practice. Families want useful support early, to understand where to go and what their options are, to be treated as partners in decisions about their child and for supports that work around the reality of their family circumstances.

The Committee’s report reflects many of the experiences we continue to hear from families, including the burden of navigating fragmented services, geographic inequity, the importance of trusted community supports and the need to involve people with lived experience in the design and implementation of reform.

It is through this family lens that Belongside Families offers the following response.

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Recommendation 1

That the New South Wales Government provide sustainable and ongoing core funding for neighbourhood and community centres.

Belongside Families recognises the important role neighbourhood and community centres play as trusted, accessible places where families can seek information, connection and support. The Committee heard that these centres already act as important points of assistance and referral for children, families and carers.

At the same time, sustainable funding is important across the broader community infrastructure that families rely on. A strong Thriving Kids system will rely on this diverse network of trusted organisations. Funding arrangements should recognise the ongoing infrastructure required to maintain community relationships, retain skilled workforces and provide consistent support, rather than funding only individual activities or short-term projects.

Recommendation 2

That the New South Wales Government take note of the evidence received throughout the course of the inquiry, including that presented in this interim report, when developing and implementing foundational supports with an ongoing co-design and engagement roadmap developed to ensure families and services are valued partners in reform.

Belongside Families supports an ongoing approach to co-design and engagement as foundational supports move from design into implementation. Significant engagement has already occurred with families, people with disability, peak bodies and the sector, but some of the most important learning will come once families begin experiencing new services and pathways in practice. Ongoing engagement provides an opportunity to identify where arrangements are working well, where families are confused or experiencing difficulty and where particular groups may not be being reached.

Communication will also be critical during this period of change. Families need clear, timely and accessible information about what is changing, what isn’t changing, when changes will occur, what they mean in practice and where to go with questions. This should be approached as an ongoing part of implementation.

Government information should be reinforced and amplified through the range of places and organisations families already engage with, including health services, community and neighbourhood centres, family-led organisations, schools and early childhood settings, Thriving Kids and other service providers, and other trusted community organisations.

Independent family and disability voice should also remain part of the engagement architecture. Direct engagement with families, children and young people and people with disability, together

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with input from representative organisations and service providers, provides different and complementary perspectives on how reforms are working. This creates multiple opportunities to identify emerging issues, including those that may not be apparent through formal service reporting.

Co-design and consultation should therefore continue as implementation progresses, with families and people with disability able to see how their input has informed decisions and where implementation has changed in response to experience.

Recommendation 3

That, in developing foundational and disability supports for children and young people, the New South Wales Government explicitly incorporate whole-of-family wellbeing into program design, commissioning and evaluation frameworks, including measures to identify and respond to family functioning and sibling needs. This should include access to targeted mental health supports, parent capacity building, peer support and respite for caregivers and siblings, ensuring that community-based hubs and navigators are resourced to address family needs and co-designed with carers, siblings and organisations with expertise in family-focused interventions.

Belongside Families recognises the distinction made in the Government response between the role of Thriving Kids and supports such as targeted mental health services and respite that appropriately sit elsewhere. We do not suggest that Thriving Kids should provide every service a family may need.

We do, however, strongly support the underlying principle that the wellbeing and capacity of the whole family matter. Parents and carers may be supporting their child while learning about disability or developmental differences, attending appointments, making complex decisions, navigating education, health and disability systems and managing significant caring responsibilities. These experiences affect the whole family, including siblings.

This is strongly reflected in what carers continue to tell us. In a 2025 Belongside survey of carers of children with disability, 93% reported experiencing burnout often or almost always. Only 2% described day-to-day life as very manageable, while 81% identified navigating NDIS, health and education systems as contributing to their exhaustion and 72% identified social isolation.

Parents told us:

“I am constantly tired. There is no real break from caring.”

“Our lives are manageable only because I stopped working. This puts a huge strain on us financially both short and long term.”

The value of peer connection is also reflected directly in what parents tell us:

“Before I joined a peer group, I thought I was the only one feeling this way. I thought I was doing something wrong.”

Peer support can address an important part of family wellbeing by reducing isolation, creating connection with people who understand the experience, normalising uncertainty and providing a trusted space to share practical knowledge. This role sits alongside clinical, mental health, carer and other professional supports.

A family-centred system should also be able to recognise when needs sit outside the responsibility of a particular program and connect families effectively to mental health services, carer and sibling supports, community services and other relevant supports. Families should not carry the full responsibility for identifying and coordinating those pathways.

Where programs work directly with parents and carers, evaluation should consider outcomes that matter to families, including confidence, knowledge, connection, reduced isolation and the ability to make informed decisions. Supporting family wellbeing, capacity and capability contributes to better outcomes for children.

The consequences of families not finding support also need to be recognised. For a small number of families under significant pressure, delayed or inadequate support is contributing to crisis and concerns about whether the caring arrangement could be sustained. Early attention to family wellbeing is therefore important also to family stability.

Recommendation 4

That the New South Wales Government co-design and fund dedicated transition pathways for children turning 9 and those 9 and older who are eligible for foundational supports, including proactive outreach, supported transition between services, and clear information for families about their options. These pathways should be co-designed with children, young people and families and include specific safeguards to prevent any interruption of essential supports at key developmental and schooling milestones.

Belongside Families works with parents and carers across childhood and adolescence, and families consistently tell us that their need for information, connection and support does not end when their child reaches a particular age. While Thriving Kids is focused on children under nine, there remains uncertainty about how foundational supports will operate for older children and young people as the broader reforms develop.

From a family perspective, the important issue is continuity. Needs may change as children grow, but families still need to understand what support is available, where to go next and how different systems connect. This is particularly important around significant developmental and educational transitions, when families may already be navigating change across school, health, disability and community services.

Information will be sufficient for some families, while others may need a more supported transition, including a warm referral or assistance to connect with the next appropriate service. Planning for

continuity should begin before a family reaches the end of a particular program, rather than at the point of exit.

Recommendation 5

That the New South Wales Government implement and fund a rural and remote access guarantee strategy for foundational supports, including outreach service models, telehealth expansion, mobile allied health teams, travel subsidy enhancements, workforce incentives and regionally tailored commissioning to address geographic inequities in access and wait times.

More than half of the families supported by Belongside are from regional, rural or remote NSW, and their experiences consistently demonstrate that access is about more than whether a service technically exists within a region.

Distance, travel and limited local service availability remain significant barriers.

Families have told us:

“Because we live rurally, we were told there was no practical help available.”

“It seems that rural families are not given the same supports as those on the coast or in the cities.”

“They said they had no services where I lived and couldn’t help me.”

However, families can also face barriers to face-to-face participation because of employment, caring for other children, transport, their own disability or neurodivergence, or because their child finds travel, unfamiliar environments or group settings difficult.

Flexible delivery therefore needs to form part of how accessibility is understood. In a Belongside survey, 91% of families told us they would have missed out on peer support and parent education if online support had not been available. For many families, online participation was not simply more convenient; it determined whether they could participate at all.

Families also tell us that the most useful peer connection is not always the closest one. Parents may want to connect with others who share a particular experience, cultural background, family circumstance or stage of their child’s development. In smaller communities, some families also value the privacy of participating outside their immediate local network, particularly when discussing personal experiences relating to disability, parenting or services.

Place-based services remain essential. Local organisations and providers bring community knowledge, relationships and local context that statewide services cannot replicate. Statewide, cross-regional and virtual options can complement this by extending choice, making specialist or lived-experience expertise available across geographic boundaries and creating viable communities where there may not be sufficient numbers within a single location.

Digital delivery must itself be accessible. Connectivity, data, devices, digital confidence and access to a private space can all affect participation. Community centres, libraries, schools and other trusted local settings can form part of the response by providing safe spaces and connectivity for families who cannot readily access virtual health, allied health, peer or parent supports from home.

Equity should therefore be considered in terms of whether families can find, reach and participate in useful support. A family’s postcode should inform how support responds to its local community, but it should not determine whether useful support is available to them.

Recommendation 6

That the New South Wales Government establish and fund a statewide, integrated foundational supports co-location navigation model, including local ‘no wrong door’ entry points, shared referral protocols across health, education and community services, and digital referral infrastructure to reduce fragmentation, administrative burden and duplication experienced by families and carers. This should be co-designed with children and young people, located in places that are accessible and integrated into the community, and should be designed to deliver timely, culturally appropriate and individualised supports.

Families regularly tell us that one of the hardest parts of seeking support is simply working out where to start. They may receive different advice from different professionals, move between systems that aren’t connected or discover useful programs and entitlements through another parent or by chance.

The burden this places on families can be significant:

“Between the NDIS paperwork and advocating for my child at school, I’m constantly battling the system. It’s draining, and it’s affecting my ability to care for my child.”

“Families are doing much of the heavy lifting to coordinate different supports.”

“It shouldn’t be so hard and time consuming to get reliable and practical information and to find services that can help.”

Clear information is essential, but information, referral and navigation perform different functions. Some families will be able to act on clear information independently. Others need someone to help them understand what is relevant to their circumstances, make sense of competing advice and connect with the next service, particularly when they are already overwhelmed or navigating several systems at once.

The value of this relational support is captured powerfully by one parent:

“The biggest support I got was from another parent. She just calmly explained how things worked. I cried. It was the first time I didn’t feel lost.”

Peer navigation can therefore be one part of a broader navigation response. Peer workers bring lived experience alongside practical system knowledge and can help translate information, build confidence and support a family to take the next step. Professional navigators, clinicians, community organisations and other specialist services bring different expertise, and families should be able to enter through a range of trusted doors.

Health and education services, community and neighbourhood centres, family-led and disability-led organisations, Thriving Kids and other providers can all play a role in navigation when the pathways between them are clear.

There are already examples of this kind of connection. Kiind, a family-led organisation in Western Australia, has provided peer support within Perth Children’s Hospital for more than 35 years. Hospital staff can connect families directly with the peer support team during assessment, diagnosis or treatment, creating a warm pathway between clinical care and family support rather than requiring parents to find that support later on their own.

Recommendation 7

That foundational supports be co-designed, governed and delivered in partnership with Aboriginal Community Controlled Organisations (ACCOs).

Aboriginal children, families and communities should have a central role in the design and delivery of supports intended for them.

Culturally safe support should be developed in genuine partnership with ACCOs and Aboriginal communities, drawing on their knowledge, leadership and existing relationships rather than expecting mainstream or specialist disability organisations to determine what culturally appropriate support should look like.

Where organisations work with Aboriginal families, strong relationships with ACCOs can also support referral, local adaptation and connections to Aboriginal-led services and communities.

Recommendation 8

That the New South Wales Government embed an equity and inclusion framework for culturally and linguistically diverse families within foundational supports.

Belongside Families supports an explicit focus on equity for culturally and linguistically diverse families. The Committee heard about barriers including language, health and service literacy, stigma around disability, difficulties navigating systems and lack of interpreters.

Families need access to interpreters, culturally appropriate information, trusted referral pathways and opportunities to receive support from people and organisations that understand their cultural and community context.

Peer support can also contribute to this work. Families may benefit from connecting with parents and carers who share their language, cultural background or experience of disability within their community.

Monitoring will also be important. Participation and outcomes data should make it possible to identify whether culturally diverse families are finding and using supports at comparable rates, and where additional outreach or adaptation is required.

Recommendation 9

Foundational supports funding models should include multi-year, flexible block funding arrangements, outcome-based accountability, and co-investment mechanisms to enable long-term planning, workforce stability, and continuity of care.

Belongside Families strongly supports this recommendation. Funding stability for organisations delivering foundational supports directly affects their ability to plan, retain a skilled workforce, invest in quality and provide consistent services.

This has particular implications for family-led, disability-led, peer-led and other community organisations whose work is built over time through relationships, community trust and specialist lived-experience capability. Short funding cycles make it difficult to retain experienced staff, build organisational capability and maintain programs and referral relationships beyond the life of individual grants, even where there is strong demand.

The effect on the peer workforce warrants particular attention. Peer workers are parents and carers who bring their lived experience into skilled paid roles while continuing to manage their own caring responsibilities. Funding uncertainty can translate directly into reduced hours, short contracts and the loss of trained workers at the end of a funding cycle. Greater employment security and predictability are particularly important for a workforce whose caring responsibilities can already limit participation in paid employment.

One Belongside peer worker described what the role had meant to them:

“This is work that matters. It gave me identity, income and the chance to use what I’ve learned to help someone else.”

Funding stability is also fundamental to quality. Effective peer support requires more than employing people with lived experience. Organisations need the capacity to invest in induction, training, supervision, reflective practice, safeguarding, workforce wellbeing, evaluation and continuous improvement specifically relevant to a peer workforce. These structures protect families, support peer workers and enable lived experience to be translated into consistent, high-quality practice.

For families, the flow-on effect is continuity. When funding ends, families can lose trusted programs and experienced workers, while the sector loses knowledge, relationships and capability that have taken time to establish.

Recommendation 10

That the New South Wales Government implement and evaluate place-based solutions like relational contracting that reflect the unique needs and strengths of each community, particularly in rural, remote, and disadvantaged areas. The funding model should be co- designed with shared accountability among service providers, families, and community stakeholders and enable local service to jointly triage cases, review community trends, and develop collaborative responses.

Belongside Families supports approaches that encourage local organisations and services to work together around the needs of their community rather than operating as disconnected programs. Stronger local collaboration should mean fewer disconnected referrals, clearer pathways and less need for parents and carers to coordinate services themselves.

Place-based approaches should also remain connected to the broader support ecosystem. Not every service, area of expertise or peer community can reasonably be available within every local community. Local networks should therefore be able to connect families with statewide, online, specialist and culturally specific supports where these better meet a family’s needs.

This would allow local knowledge and relationships to be strengthened without making a family’s access to support dependent solely on the capacity available within their postcode.

Recommendation 11

That the New South Wales Government establish and fund a dedicated prevention and early intervention investment framework within foundational supports, prioritising evidence-based community delivery models, scalable early identification pathways, developmental screening integration and sustained funding for programs demonstrating long-term outcome and cost- avoidance benefits.

Families consistently tell us that the period when they first notice concerns or begin navigating disability and developmental systems can be one of considerable uncertainty. Support at this stage should not be limited to clinical intervention; families may also need clear information, peer connection, practical learning and help understanding their next steps.

Families shouldn’t have to wait years before finding someone who can help them make sense of what comes next. In a Belongside Families survey, most families reported going more than two years without support, with some waiting up to six years before accessing peer support. We believe no

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family should begin this journey alone. Early access to trusted information, peer connection and practical guidance can help families feel supported and better equipped to take the next step.

Our original submission captured this experience directly:

“I didn’t know where to start.”

It also described families receiving conflicting advice and delaying decisions or becoming overwhelmed as they tried to work out which pathway to follow.

Investment frameworks should therefore recognise outcomes beyond clinical or developmental measures. For peer support, parent education and navigation, outcomes such as increased family knowledge, confidence, connection, decision-making and ability to navigate systems are important indicators of whether early support is working.

There is also an opportunity to strengthen the evidence base around community and peer-led models. Belongside is currently working with the Parenting Research Centre to strengthen evaluation of its peer-led service model, including evaluation protocols and outcome measures. Independent evaluation can help identify what is working, for whom and under what conditions, and provide a stronger basis for sustained investment in approaches that demonstrate meaningful outcomes.

Recommendation 12

That the New South Wales Government publish a clear foundational supports system map including eligibility boundaries, service scope definitions, interface points with the NDIS and universal services, implementation timelines, transition funding allocations and a publicly accessible information platform for families and providers.

Families shouldn’t need to understand government portfolios, funding arrangements or the boundaries between different systems before they can work out where to go for help.

The experience families describe is much more practical:

“Information is not centralised, it’s hard to know what you can have access to because it’s in a hundred different places.”

“It would help to know clearly what is on offer and what we can request.”

“I need information on what we can get. I feel like it’s a secret you have to find out what you can get.”

This is also an equity issue. When accessing support depends on already knowing what to ask for, understanding how systems operate, having confidence to advocate or having the time and capacity to persist, families with higher systems literacy and stronger advocacy skills are more likely to

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succeed. A clear foundational supports information system should reduce the extent to which access depends on those individual resources.

A useful system map needs to answer the questions families actually have: what support is available, who it is for, whether a diagnosis or referral is required, how to access it, what happens if one service is not right for them and what other options are available.

It should provide visibility across local and statewide services, relevant Commonwealth-funded programs, community organisations, carer supports, disability and family organisations, peer networks, online programs and mainstream services. Information should then be actively distributed through the health professionals, schools, early childhood services, community organisations and service providers families already use.

There are useful precedents for this approach. Resourcing Parents NSW brought parenting education information and programs together so families can see opportunities delivered by multiple organisations rather than searching provider by provider. The underlying principle is equally relevant to foundational supports.

The information function also requires ongoing maintenance. A directory that is out of date, incomplete or disconnected from referral pathways will not reduce the burden on families. Families who need further help to understand their options should also be able to move from information into relational navigation.

Recommendation 13

That foundational supports uphold children’s right to support in their learning and educational setting and be formally embedded within playgroup, early learning and school settings through revised funding mechanisms, co-commissioned allied health supports, universal design for learning implementation, educator capability building and integrated inclusion planning between education, health and disability systems.

Belongside Families recognises the Government’s position that Thriving Kids does not encompass changes to education funding mechanisms or existing education funding schemes. We welcome, however, the Government’s intention for Thriving Kids services to be able to operate alongside schools and early learning settings and for DCJ and the Department of Education to establish protocols supporting these arrangements.

Families tell us that access for external therapists and other providers within schools can be inconsistent. Where collaboration is difficult to establish, there is a missed opportunity to support the child in the setting where they spend a significant part of their day. The National Best Practice Framework for Early Childhood Intervention emphasises participation in everyday environments and collaboration between families, practitioners and the people already involved in a child’s life.

The opportunity is therefore to establish clearer and more consistent arrangements that enable appropriate collaboration while respecting the role, responsibilities and operational requirements of

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schools and early learning services. Protocols should be developed with education, families, service providers and relevant professional groups and should address practical issues such as communication, consent, information sharing, safeguarding and how practitioners work alongside educators.

For children, stronger collaboration creates greater opportunity for strategies and supports to be understood and applied consistently within the environments where they learn, play and participate, with educators and practitioners working together to support inclusion, participation and development.

Recommendation 14

That the New South Wales Government develop a cross-sector workforce strategy for foundational supports that includes a transitional fund for providers, pay parity initiatives, indexed funding rates, rural workforce incentives, student placement pipelines, supervision supports and joint workforce planning with health, education and disability sectors.

Parent peer workers bring a distinct form of expertise to the workforce. Their lived experience sits alongside practical knowledge of disability, health, education and community systems and enables them to build relationships with families through shared understanding. This complements the expertise brought by allied health professionals, educators, early childhood practitioners and other specialist workforces.

As one Belongside parent described it:

“The biggest support I got was from another parent. She just calmly explained how things worked. I cried. It was the first time I didn’t feel lost.”

If peer support is to form a meaningful part of foundational supports, peer roles should be recognised as skilled work, with appropriate recruitment and induction, training, supervision, reflective practice, fair remuneration and opportunities for development.

Quality peer practice also depends on the structures around the worker. Parent peer workers draw on their own lived experience and may support families through diagnosis, isolation, crisis, system difficulties and other stressful periods. Many continue to have substantial caring responsibilities themselves. Organisations employing peer workers therefore need appropriate supervision and debriefing, clear role boundaries and escalation pathways, reflective practice, workforce wellbeing supports and flexibility that recognises caring responsibilities.

These structures should be regarded as part of the peer workforce model itself. They enable peer workers to use lived experience purposefully and safely, support workforce retention and provide consistency and quality for families.

A NSW family peer workforce strategy could bring these elements together through clear role definitions, recognised training and development pathways, supervision and practice standards,

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communities of practice, appropriate remuneration and employment conditions, and deliberate development of a diverse peer workforce across metropolitan, regional and rural NSW.

Recommendation 15

That foundational supports recognise parents and carers as critical partners and include universal and targeted parent and carer capacity building initiatives focused on strengthening caregiver confidence, early learning support at home and responsive parenting practices, with delivery embedded in accessible, non-stigmatising community settings such as home, educational services (early childhood education and schools), neighbourhood centres, playgroups and family support services.

Belongside Families strongly supports the recognition of parents and carers as critical partners in their child’s development and wellbeing.

Families hold deep knowledge of their child, but they are often asked to make decisions in systems that are unfamiliar and complex. Effective capacity building should give families practical knowledge, skills and confidence at the points they need them, while strengthening their ability to work in partnership with professionals and make informed decisions for their child.

Families also need different things at different stages. Consultations contributed to by Belongside found strong interest in understanding a child’s disability or developmental differences, learning practical ways to support development at home, and building confidence to advocate for a child and family. Families valued bite-sized learning that they could access when a topic became relevant, different delivery modes and times, and clear pathways to further information and support.

This suggests a model of parent capacity building that is available over time rather than concentrated at one point in a child’s journey. A family might need information about developmental supports early on, school partnership and inclusion several years later, and different support again as their child becomes more independent.

Peer and professional expertise can work particularly well together in this context. Professional and subject-matter expertise provides evidence and technical knowledge, while peer facilitation helps families connect that information to everyday family life, ask the questions they genuinely want answered and learn from the experiences of others.

Belongside’s own peer-led workshops and webinars provide one example of how parent and carer capacity building can work in practice. Our workshops combine lived experience, evidence and professional input, with content written in plain English and supported by practical frameworks, templates and take-home tools. Topics include making therapy work for the child and family, preparing for school, working in partnership with educators and professionals, navigating systems and advocating for a child’s inclusion and support.

Our webinar model similarly brings professional knowledge and lived experience together. Peer facilitators help translate technical information into everyday family life, create space for the

questions families want answered and connect participants with further workshops, peer groups, resources and services. Families have told us these sessions are useful because they build the confidence, language and practical skills to apply that information and share it with others.

Thriving Kids should similarly make parent and carer learning available in accessible community settings and online, with enough flexibility for families to engage around employment, caring responsibilities, geography, disability, neurodivergence and the needs of their child.

Recommendation 16

That families, carers and people with lived experience be embedded in foundational supports implementation, including advisory groups, evaluation design, commissioning input and service quality monitoring.

Belongside Families strongly supports this recommendation. The knowledge held by people with disability, children and young people, parents and carers should continue to shape Thriving Kids throughout implementation, evaluation and improvement.

These perspectives are related, but each contributes something different. People with disability bring direct knowledge of inclusion, participation, autonomy and the experience of receiving support. Children and young people bring perspectives that adults cannot assume on their behalf. Parents and carers understand how support operates across family life and across the multiple health, education, disability and community systems surrounding their child.

Victoria provides a useful example of how ongoing family participation can be structured. The Victorian Committee for Families of Children with Disability brings together 12 parents and carers to provide direct feedback to government about policies, programs and services across areas including disability, education, health and child and family services. The committee is chaired by the Parliamentary Secretary for Disability, meets on an ongoing basis, and family engagement is supported by Belongside’s partner organisation in Victoria, Advocating for Children with Disability (ACD).

A similar standing mechanism in NSW could provide a dedicated avenue for diverse parents and carers of children with disability and developmental differences to inform implementation over time, alongside existing disability advisory structures, peak bodies, provider engagement and direct engagement with children, young people and people with disability.

Participation should also be accessible and properly supported. This includes remuneration, accessible meeting arrangements, practical participation supports and deliberate inclusion of families from regional and rural communities, culturally diverse families, Aboriginal families, parents and carers with disability, and families whose experiences may be less visible through established consultation channels.

Meaningful participation is demonstrated through influence. Participants should be able to see how their advice has shaped decisions, where changes have been made and how emerging issues are

being followed up. This creates a continuing feedback loop between lived experience and implementation rather than relying on consultation at fixed points in the reform process.

Recommendation 17

That the New South Wales Government invest in shared digital infrastructure for foundational supports, including common intake tools, consent-based information sharing, service directories, referral tracking and outcomes dashboards to improve coordination, reduce duplication and strengthen system accountability.

Belongside Families sees considerable opportunity in this recommendation. Families consistently describe the administrative burden created by fragmented systems, including completing similar intake processes, chasing referrals, carrying information between services and repeatedly explaining their child and family circumstances.

Parents are often expected to coordinate between health, education, disability and early childhood systems, retell their story repeatedly and fill the gaps created by poor service integration.

There can also be an emotional cost to repeatedly recounting difficult experiences. Families describe confusing and repetitive intake processes and the effort involved in having to establish or ‘prove’ their need for support.

Families have said:

“The bureaucratic processes are so complicated that they add a whole new layer of stress. Instead of focusing on caring for my child, I’m drowning in paperwork.”

“Feeling like I had to really prove my need for support was emotionally exhausting.”

“Families are doing much of the heavy lifting to coordinate different supports.”

Well-designed shared infrastructure could reduce both the practical and emotional burden on families. Common intake information could allow families to provide core information once and control how it is shared. Referral tracking could make it clearer what has happened after a referral is made and reduce the need for parents to repeatedly follow up. Current service directories could help families and navigators identify what is actually available, while consent-based information sharing could improve continuity when a family moves between services or systems.

Any shared infrastructure should be built around informed consent, privacy and digital inclusion. Its purpose should be to reduce the burden on families, not create another system they are expected to navigate. Digital referral and information sharing should also support, rather than replace, warm and relational navigation where families need it.

Conclusion

Belongside Families welcomes the opportunity presented by the development of Thriving Kids in NSW. The issues raised in this submission reflect what families tell us about the practical experience of raising a child with disability or developmental differences and trying to find the right support at the right time.

Families want useful support early, clear and reliable information, somewhere to turn when they do not know what to do next, and options that fit within the reality of family life. They value professional expertise and practical information, connection with peers who understand their experience, and opportunities to build their own knowledge and confidence. They want to be recognised as partners in supporting their child and to know that their experiences will continue to shape the system as it develops.

Meeting these needs will require a mix of responses. Local and place-based services are important, as are statewide and online approaches that extend access across geographic boundaries. Professional workforces are essential, alongside a skilled and supported peer workforce. Clear information can help families navigate independently, while relational navigation is important for families who need support to understand or act on their options.

Sustaining these responses also requires attention to the organisations and workforces behind them. Funding certainty, workforce development, supervision and quality structures may sit behind the scenes, but they directly influence whether families experience consistent, safe and trusted support.

Most importantly, the ongoing development of foundational supports should continue to be informed by the experiences of children and young people, people with disability, parents and carers, alongside the organisations and services that work with them. This will help ensure that implementation remains responsive to what families actually experience in practice and that emerging gaps can be identified and addressed as the system develops.

Belongside Families welcomes the opportunity to continue contributing to that work.

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