Better support for children and their families inside and outside the NDIS

In Australia, one-in-five children have disability or developmental concerns.¹¹¹ The lack of support for parents, limited foundational supports, gaps in mainstream services and the delivery of NDIS funded early intervention supports mainly in clinical settings means that children and families are not getting the supports they need at the optimal time.

The number of children who were developmentally vulnerable on one or more domains by the time they reached school age has remained relatively stable over the 12 years data has been collected.¹¹² Prevalence rates continue through the schooling years, where 20 per cent of students require an educational adjustment due to disability.¹¹³

This means that support for children with disability and learning difficulties is a mainstream issue, not a marginal issue and must be addressed systemically.

Many more young children are entering the scheme than was expected.¹¹⁴ This partly reflects higher than previously identified rates of disability and delay amongst young children. It also reflects a lack of supports for children with developmental concerns or disability in mainstream settings. With so few supports outside the NDIS it is not surprising that families are seeking access to the scheme to get much needed support.

This is illustrated by the growing numbers of children in the scheme, while the proportion of children who are developmentally vulnerable has remained stable. There are currently around 145,000 children aged under 9 who are participants - this is approximately 5 per cent of all children in Australian under 9.¹¹⁵

The experience of the last ten years has highlighted the critical need to create an ecosystem of support for children with developmental concerns, delay or disability to ensure they and their families are well supported and have what they need to thrive.

Children with disability and developmental concerns are not being consistently identified early in life

It is well established that children with disability and developmental concerns need effective supports early in life. Children learn right from birth and their learning is continuous and cumulative. Gaps in development can open at any time and widen progressively without early intervention.¹¹⁶

This means children with emerging developmental concerns need to be identified as early as possible. Developmental monitoring needs to occur regularly over the early years to ensure children are identified and supported early.¹¹⁷ Both the child and their parents need support because children thrive in well-supported families. Despite this, there are inconsistent approaches to identification in mainstream services across Australia. This means some children are missing out on critical early support.

Even when children are identified early with disability or developmental concerns, it can be hard for families to find evidence-based and accessible supports. This has meant there is every incentive for families to seek access to the NDIS to ensure they can receive supports during this critical period.

Inclusive education improves outcomes for children, but has a long way to go in Australia

Inclusion in education remains a significant challenge in Australia. Barriers to inclusion in education and exclusion begin early. Children with disability and developmental concerns are less likely to access early childhood education and care, experience difficult transitions to school and often face barriers to accessing and maintaining school enrolments.¹¹⁸

We have heard about a number of barriers to inclusion and enrolment for children with developmental concerns and disability. The Australian Government’s Inclusion Support Program provides support for eligible mainstream services to “build their capacity and capability to include children with additional needs, alongside their typically developing peers, so all children have genuine opportunities to access, participate and achieve positive learning outcomes”.¹²⁰ An evaluation of the Program found 1 in 5 parents of a child with additional needs reported having to change childcare providers because of issues with care.¹²¹ This is double the rate of parents of children without disability.

We have heard about the fraught experience in transitioning to school, securing necessary adjustments, and the fragmentation between the NDIS and the education system. Others told us that progress is lost when their child started to attend school. Children with disability or developmental concerns often face suspensions, expulsions and restrictive practices at higher levels compared to other children.¹²³ The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has also heard about the lack of inclusion and adjustments in mainstream education settings, meaning many children are not experiencing an inclusive education that will lead to positive lifetime outcomes.¹²⁴

Families feel unsupported and lack information, advice and peer support

When a child has a disability or developmental concerns, families are more likely to experience stress and increased demands on their time that affect their wellbeing. We have heard about the isolation, exhaustion, anxiety and stress which underpins the experiences of families and caregivers of children.

Families currently have limited access to capacity building, peer support, neurodiversity affirming or other disability-specific organisations that promote contemporary models of disability, positive visioning and inclusion.

While all families of children with disability and developmental concerns need early access to information, advice and peer support, it has been notable that it is families of participants who most often reported feeling unsupported. Too many described their experience of the NDIS as stressful and traumatic.

Access to the NDIS for children is inconsistent, inequitable and not based on need

Many children enter or remain in the NDIS based on an access list. The access lists provide for both automatic access and streamlining of evidence based on disability. These lists can provide simple and transparent access to the scheme for some children. However, they also exacerbate inequity and delay support for children with similar levels of need who may not have a diagnosis on an access list or lack the means to obtain a diagnosis if they don’t meet the age criteria for developmental delay. Determining eligibility through a diagnosis-based approach also fails to provide a good understanding of the needs and circumstances of children and their families.

The budget setting process for children is complex and inconsistent

We have heard about a myriad of challenges experienced by families during the planning process. This includes difficulties gathering information and a lack of support to navigate the system. We heard that too often outcomes are determined by a family's ability to advocate.

Families have described the planning experience as confusing, overwhelming and opaque. Families need to advocate for their child, often by painting a deficit-based picture of their child in the worst possible light. If families do not have sufficient self-advocacy skills, this leads to inequitable funding outcomes. When combined with being new to the world of disability and having a limited understanding of best practice, families are often unprepared for the planning process.

Families generally tell their experience to an early childhood partner who makes a recommendation for a plan budget. This is usually approved by a separate delegate in the National Disability Insurance Agency (NDIA) - who has more than likely never met the family before. It is confusing and frustrating for families when the approved plan budget is not in line with what the early childhood partner or providers had recommended. This leads to distrust.

It is also challenging for the NDIA to assess competing information, including what providers and early childhood partners recommend, and how these factors might be linked to structured practice guidance and a best practice early intervention approach. The NDIA is heavily reliant on the information and case made by the family and early childhood partners. These factors can lead to subjective and inequitable assessment of reasonable and necessary supports for children. This is compounded by an inconsistent uptake of family centred planning approaches and a lack of transparency of why decisions were made.

The current use of functional capacity tools such as Pedi-CAT to inform planning has also been criticised in other reviews. Many of the functional capacity tools used by the NDIA during planning have not been developed or validated for use in determining funding.¹²⁷

Best practice is not embedded in supports for children and families

The NDIA early childhood approach was designed based on best practice principles for children with disability or developmental concerns.¹²⁸ This involves a family centred, capacity building approach, a collaborative team working together, with support primarily being delivered in natural settings, where children live, play and learn.¹²⁹

Efforts to encourage families and the market to adopt this approach have failed.¹³⁰ The inability of the NDIS to effectively inform, support and build the capacity of families has been repeatedly highlighted.

Before the NDIS, best practice was not consistently implemented or available across Australia. Individualised funding models including Helping Children with Autism and Better Start for Children with Disabilities, were often in tension with best practice despite providing increased support to families. These programs incentivised families to select delivery of supports in clinical settings, to maximise face-to-face time with therapists, over supports provided in natural settings.¹³²

There has been insufficient attention to shaping the early intervention market, restricting more widespread use of best practice supports. There are limited requirements or incentives to deliver support in natural settings, appoint a key worker or promote collaboration of the team around the child.¹³³ Providers report that families often feel that use of funding for these purposes is ‘reducing the therapy budget’ intended for their child.¹³⁴Travel time for therapists is often seen by families as eating into precious therapy time. Families face an extremely tough decision to choose a service model that may result in fewer hours of therapy being delivered to their child. They need far more support through this decision and greater information of the benefits of best practice.

Progress monitoring processes are currently insufficient to improve outcomes

There are few mechanisms within the NDIS to monitor children’s development and functioning in a safe, non-judgemental and responsive way, or to assess how a child and their family are responding to supports. Planning and plan reviews have also been identified as inappropriate forums for reviewing a child’s progress due to their links to funding decisions.

This is compounded by there often being multiple professionals and therapists working with an individual child and family, often in isolation from each other. Without effective monitoring and evaluation, it is difficult to assess how well the combination of supports is working or what outcomes are due to each intervention.

The fragmentation of supports and lack of monitoring and evaluation mechanisms means opportunities are missed to make adjustments needed to accelerate developmental progress. This also means there isn’t an effective way to identify children who are or aren’t making good progress as a result of the early intervention. This means supports and budgets aren’t as responsive to changes in need as they should.