Inquiry into foundational and disability supports available for children and young people in NSW

25 September 2026

Director Select Committee on Foundational and Disability Supports Parliament House Macquarie Street Sydney NSW 2000

Via email: disabilitysupports@parliament.nsw.gov.au

Dear Director

Thank you for the opportunity to provide a submission to the inquiry into foundational and disability supports available for children and young people in NSW.

Legal Aid NSW provides legal assistance to clients with diverse needs who are experiencing disadvantage, including clients and/or their family members who live with disabilities. Our two specialist services – the Disability and Elder Abuse Service (DEALS) and our NDIS appeals section – provide advice and representation to clients who live with a disability, where their legal problem is connected to the experience of disability and they would benefit from the support of a specialist disability service. Each financial year, our NDIS appeals section provides around 1,000 advice and casework services to people aged under 21, which is approximately a quarter of their caseload.

The terms of reference are to inquire into and report on child development, early childhood intervention services and other foundational and disability supports available for children and young people with developmental concerns, delays, differences or disabilities in NSW. Our feedback on the terms of reference follows.

(a) The role of such services and supports on a child’s overall development, health and wellbeing

In our experience, early intervention can be lifesaving and improves a child’s capacity to remain within mainstream services for longer. Early intervention services reduce the risk of carer burnout by providing essential support for families to manage a child’s complex needs. Our lawyers see how early intervention improves the capacity for children to remain with their families, reducing the risk of family

breakdown and the need for Department of Communities and Justice (DCJ) involvement.

(b) The types of services and supports available and measures to improve effectiveness, availability and access of such services and supports in metropolitan, regional, rural and remote NSW, including medical, community-nursing, allied health services, NDIS services and other service delivery models

Clear and comprehensive delineation of responsibility

Our clients and staff report apprehension and uncertainty about the current changes to funding and service delivery across the disability sector. Families and children are already experiencing service delivery gaps as levels of government shift responsibility for services. We see how the uncertainty is causing an additional burden to the already difficult lives of many families accessing our services.

As the NDIS increasingly narrows its role and clarifies funding boundaries, many families report a lack of clarity about who is responsible for meeting the financial and care burdens associated with raising a child with disability. As a result of the changes, many children will lose (or never obtain) access to NDIS funded services. In these circumstances, an adequately funded and accessible foundational support system is crucial.

The legislative changes necessary to re-route our clients from the NDIS onto foundational supports have still not been finalised. We recommend that no child is removed from the NDIS scheme until foundational supports are developed, trialled and implemented consistently across NSW.

The current state-based service system is patchy, and there is uncertainty about how group programs will function and how they will interact with Medicare and existing school supports. There are currently few group-based therapies or parental support programs available. In our experience, supports of this kind have not typically been funded through NDIS packages.

We recommend increased funding for specialised and skilled allied health assistants in daycare and school-based settings. This would ensure children receive the support they need in everyday environments and reduce the pressure on parents, who are often left to absorb significant costs or reduce workforce participation to manage their child’s disabilities.

Adequate funding of services

The adequacy of funding for foundational supports, including the Thriving Kids program, is a concern for our clients. The NSW 2026-27 budget has committed $631.9 million over five years to support the commencement of Thriving Kids

services, as part of a $1.1 billion package co-funded by the Australian Government,1 but it is still unclear if this will be enough to make foundational supports effective across NSW. Given the average NDIS package is $16,000 per participant, whereas we understand foundational supports will be around $5,000, significant gaps in services are likely to arise.2

It is unclear how many children will be impacted by the shift from the NDIS to foundational supports, and whether the committed funding will be enough to ensure families get the help they need. State-based services need to be adequately and appropriately funded to fill the gaps and provide consistent support for children and families.

Thriving Kids

We observe that the proposed scheme under the Thriving Kids banner appears quite fixed, with limited choice, control, variability or flexibility in tailoring services. We are concerned this rigid model may not reflect the diversity of children’s needs. We would like to see a system responsive to the supports children need, including access to allied health, assistive technology and tailored programs that respond to local circumstances.

From the information available, much of the support is expected to be delivered in school or community settings. There is no in-home model at all, which we know from our NDIS clients is often an effective and beneficial therapy setting, and can be most appropriate for some families. Children might not want a therapist showing up to school because of the stigma associated with disability. Children can also be highly distracted at school, and this can impact therapeutic outcomes. Our lawyers observe that amongst our client base that there can be more than one child with disability in the family making in-home the most practical option.

Some of our clients have reported finding the ‘parenting support’ idea in Thriving Kids problematic. The idea that parents can replace professional therapy from skilled and qualified experts represents a misunderstanding of the different roles that parents and therapists play in a child’s life. Additionally, the families we service want to know what will happen when children age out of the Thriving Kids services at age eight.

(c) The role of diagnostic services, existing gaps and barriers, and measures to improve effectiveness, availability and access of such services

Early assessment and diagnosis are essential to ensure children can access appropriate interventions and supports as early as possible. There are significant cost barriers to obtaining early assessments and diagnoses. In addition, for children

with genetic conditions, the diagnostic process can be lengthy, often taking months and, in some cases, years.

While families are waiting for a diagnosis, children may experience significant disability but be unable to access appropriate supports because they do not yet have a clear diagnosis. Improving access to timely and affordable assessment and diagnostic pathways would help ensure children receive the support they need when they need it. Anita’s story below highlights the cascading injustices that can result when the complex system fails.

Anita’s story

Anita is a four-year-old child with significant disabilities. She is a twin; her sister also has disabilities, although less significant, and receives an appropriately funded NDIS plan. Anita was awaiting genetic testing, which was expected to confirm a genetic disorder listed on the NDIS List A conditions for access.

The NDIS declined to fund early intervention supports, stating that these supports were the responsibility of the health and education systems. However, both systems advised that they lacked the resources to provide the level of support required, and recommended that the family seek NDIS funding.

The NDIS also refused to fund an adequate number of support worker hours, citing parental responsibility. As a result of Anita’s extensive care needs and repeated hospital admissions due to a worsening condition, both parents exhausted their leave entitlements and ultimately lost their jobs. The family faced significant financial hardship and was at risk of losing their home due to loss of income.

A support worker then reported the parents to child protection for alleged neglect. The concerns were based solely on the perceived untidiness of the family’s apartment. Anita was refused access to daycare because her medical needs, including tube feeding and medication administration, were considered too complex.

Following a two-year Administrative Review Tribunal (ART) process, the family reached a settlement with the NDIA that included increased core and capacity building funding. However, the funding remains insufficient to meet Anita’s care needs. By this stage, the parents were exhausted and unable to continue challenging the matter at the ART.

Regional, rural and remote areas

Our lawyers observe that diagnostic assessment of children is especially difficult in rural and remote areas, with allied health professionals often not available to assist. Waitlists for paediatricians, often required as the first step, are long and can be prohibitively expensive. Several appointments are often required and then further referral elsewhere with more wait time and expense.

One of our government lawyers recently provided advice to the mother of Sam, a young Aboriginal child in the case study below. Sam’s story highlights the complexities with diagnosis in young children, where it takes time to see how development unfolds and whether symptoms congregate into meeting the criteria for a particular condition.

Sam’s story

Sam is a seven-year-old Aboriginal child from Singleton NSW. Sam was originally given access to the NDIS for developmental delay, then later diagnosed with a severe developmental language disorder, based on lack of progress despite three years of consistent speech therapy. There was a suggestion that the disorder could be indicative of neurological impairment but had many features characteristic of autism.

Because Sam did not have any specific diagnoses, his NDIS plan was revoked. Sam remained on the waitlist to see a paediatrician for further assessment (including autism) for three years and only reached the top of the waitlist during the Tribunal review.

We hear reports from clients of some providers prioritising NDIS participants due to capacity issues and the differences in payment they receive. We are concerned that this could create further obstacles to families trying to find providers of foundational support services.

(d) Gaps and barriers to accessing early childhood intervention and their impact on a child’s overall development, health and wellbeing, as well as on their family or carers and other government services and system

We see amongst our clients how stigma can prevent families from seeking support or engaging with early intervention services, delaying access to assistance when it is most needed. Carer burnout can act as a barrier to accessing early intervention, as families managing significant caregiving responsibilities may struggle to navigate services, attend appointments, or advocate for support.

In our experience, institutional distrust, particularly among families with past involvement with child protection systems, can discourage engagement with services and reduce willingness to seek help at an early stage. Combined with convoluted service systems with unclear scopes of responsibility, it is difficult for families to identify what supports are available and who is responsible for providing them, resulting in delays or gaps in service access.

From our casework, we see how barriers delay children receiving early intervention, increase pressure on families and carers, and contribute to a greater reliance on health, education and child protection systems as needs escalate over time.

(e) Opportunities to increase engagement across sectors and improved collaboration across both government and non-government services, including Aboriginal Community Controlled Organisations, early learning services, educational settings and health services

(f) Other government or best practice child development and early childhood intervention service models and programs operating outside of NSW

(g) Workforce issues in the child development and early childhood intervention sectors, including workforce demand and the availability, quality and capacity of existing workers.

We observe that there is a shortage of workers with the skills and training required to support children with complex disabilities, particularly those involving tube feeding, aspiration risks, medication administration, and significant behavioural challenges. Workforce capacity is further limited by a lack of staff who are appropriately trained to manage behavioural challenges using evidence-informed approaches that do not rely on applied behavioural analysis. These workforce shortages can make it difficult for children and families to access safe, appropriate and consistent support across early childhood, education and community settings.

(h) Measures to implement recommendations of the NDIS Review Final Report and the Disability Royal Commission Final Report in relation to foundational supports

We see the need for better resourced state-based systems so that foundational supports are available and accessible to children and families, regardless of NDIS eligibility. The system should allow access to services based on a child’s functional needs and family circumstances, rather than requiring families to wait until a diagnosis is finalised before receiving support.

We also see the need for meaningful income support for parents who are required to relinquish employment to undertake full-time caring responsibilities for their child. Clarification of the responsibilities of the NDIS, health, education and other government systems is needed so that families can more easily identify where supports should be accessed and are not left navigating gaps between services.

(i) Any other related matter

Importance of reviews from a First Nations perspective

In our experience, access to therapeutic supports is a systemic challenge for First Nations clients living with disabilities in regional and remote communities. We submit that the right of administrative review is crucial in a disability context, where operational guidelines play a substantial role in decision-making and could have

profound consequences for First Nations children seeking access to early intervention and foundational supports.

The ART alternative dispute resolution (ADR) processes for NDIS matters provide an important opportunity to remedy inequity in access and supports. ADR enables prospective NDIS participants and the NDIA to work together in a conciliatory manner towards addressing evidentiary gaps in the context of an individual’s circumstances, rather than solely through the documents initially available to them.

In practice, these ADR processes often involve:

the NDIA posing targeted questions to a prospective participant’s treating specialists, with the Agency commonly meeting the reasonable costs of obtaining those responses
the NDIA obtaining relevant medical records by way of summons, including payment of reasonable associated expenses, and
the NDIA engaging independent experts to prepare reports at the Agency’s expense. While these reports are often occupational therapy assessments directed to the substantially reduced functional capacity criteria, they frequently provide valuable evidence regarding both a participant’s support needs and the functional impact of their condition.

In our experience, these processes are invaluable to prospective child participants facing disadvantages arising from geography, socio-economic status, and/or limited access to specialist services. The availability of First Nations ART liaison officers is also valuable for First Nations children seeking access to disability supports through the administrative review process.

For these reasons, we consider that the right of administrative review should be guaranteed in the Thriving Kids program in relation to both access eligibility and the provision of early intervention and/or foundational supports.

Thank you again for the opportunity to provide a submission. If you have any questions or would like to discuss this matter further, please contact redacted at redacted or redacted on redacted

Yours sincerely

Monique Hitter Chief Executive Officer

profound consequences for First Nations children seeking access to early intervention and foundational supports.

The ART alternative dispute resolution (ADR) processes for NDIS matters provide an important opportunity to remedy inequity in access and supports. ADR enables prospective NDIS participants and the NDIA to work together in a conciliatory manner towards addressing evidentiary gaps in the context of an individual’s circumstances, rather than solely through the documents initially available to them.

In practice, these ADR processes often involve:

the NDIA posing targeted questions to a prospective participant’s treating specialists, with the Agency commonly meeting the reasonable costs of obtaining those responses
the NDIA obtaining relevant medical records by way of summons, including payment of reasonable associated expenses, and
the NDIA engaging independent experts to prepare reports at the Agency’s expense. While these reports are often occupational therapy assessments directed to the substantially reduced functional capacity criteria, they frequently provide valuable evidence regarding both a participant’s support needs and the functional impact of their condition.

Thank you again for the opportunity to provide a submission. If you have any questions or would like to discuss this matter further, please contact redacted it at redacted or on redacted

Yours sincerely

Monique Hitter Chief Executive Officer

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