Families are struggling with confusing mental health and disability systems. Here’s how we can do better.

“The only lifeboat in the ocean.”

That’s the description of the National Disability Insurance Scheme (NDIS) put forward by Bill Shorten, one of the architects of the scheme and now the minister responsible for it.

For families of children with developmental concerns, this description rings true: the lifeboat of the NDIS cannot rescue all the children struggling in the ocean during the most critical years of their development.

There is abundant evidence that early intervention and support for developmentally vulnerable children and their families is vital to ensuring their wellbeing. The service systems supporting these children – including child and adolescent mental health, child development, maternal health and NDIS – are fragmented and poorly designed, leading to lost opportunities.

Governments – national, state and territory – are investing significantly in early childhood development. Without radically rethinking the way developmentally vulnerable children and their families are supported, this investment will have limited impact.

There is a better way. In this article, we make the case for a single integrated system of support for children with developmental, disability and mental health concerns. This will require governments to come together, guided by community. We believe they are up for the challenge.

Childhood is a uniquely intense period of development, during which many children experience challenges. In the 2021 Australian Early Development Census, a survey of children commencing school found that 22 per cent were developmentally vulnerable in one or more areas, including language and cognitive skills, communication skills, emotional maturity, social competence or physical health.

And we know that some of these developmentally vulnerable children have an identified disability or mental health challenge.

The statistics presented in the figure above only hold true for children who have been diagnosed as having a disability or mental health challenge. For some children (often very young children) it can be difficult for their families and carers to know what is going on.

The disability or mental health challenge may present as multiple, overlapping developmental concerns. Clarifying underlying disability, disorders, compounding mental health or other co-occurring issues can be a long and bumpy road.

Once a diagnosis is reached, this is rarely the only challenge the child is facing. The co-occurrence of disability and mental health issues is high. Between 68 per cent and 77 per cent of children aged under 14 with an identified disability also have a co-occurring long-term mental or behavioural disorder.

The core problem is the fragmentation of the service system. This issue is compounded by the fact children lack agency, need to operate in systems, and rely on parents or other loved ones as caregivers.

Caregivers may find it difficult to separate disability and mental health issues from child development or parenting issues. They may still be coming to terms with the challenges their child is facing and delay seeking assistance or not wish to pursue a diagnosis due to fear of stigma.

In 2021, Nous supported a Western Australian ministerial taskforce looking at the future of infant, child and adolescent mental health services. We spoke with dozens of young people and their parents about their difficult experiences in getting access to help.

The responses were enlightening. As one parent told us:

“Services do not speak to each other or work together enough. They have different criteria, requirements and pathways. I have a law degree and I cannot make any sense of it.”

We heard of children being bounced between services, failing to meet strict eligibility criteria despite having waited months and months for an initial assessment. Further, some families struggled to meet the needs of multiple family members with developmental and mental health needs.

Compounding the problem, many children experiencing the conflicting mental health, child development and NDIS service systems are aged between 5 and 11 – a critical period for their development – and face long waiting periods. Seeking help is fulltime but unpaid job for many parents and loved ones.

The majority of child and adolescent mental health services are targeted at adolescents with complex acute mental health challenges; by contrast, infants and children are often assessed as not having high enough risk factors to be accepted into capacity-constrained services.

Difficulties accessing mental health, child development, and disability services are often interdependent. Access to one can depend on diagnosis from another. Concurrently, co-presenting issues can result in exclusion from respective systems.

To continue to receive disability support through the NDIS, a child when they turn 7 must demonstrate a permanent and significant disability, which often requires a diagnosis. For many children, a combination of developmental delay and co-occurring mental health issues means diagnosis is difficult or sometimes impossible before this age.

To address these systemic challenges, we need to think bigger than our existing systems. We must fundamentally reform the way we support infants, children and adolescents experiencing developmental concerns, disabilities or mental health challenges. We have identified three key features of an integrated support system.

The support needs to be provided early and agnostic of what specialised services may eventually be needed. There should be an easily identifiable single point of entry for parents or other caregivers concerned about their child’s development or wellbeing. This will help caregivers who do not know what specialist service they need.

This early support should:

• be available prior to diagnosis
• have a low barrier to entry and open eligibility criteria
• be holistic across all domains of child development
• work with the child and their family to develop a plan across mental health, disability and other developmental support
• be integrated with specialist services the child might need (but not necessarily deliver specialist services directly).

To be integrated, services need effective coordination. The NDIS has Local Area Coordinators and early childhood partners in the community who link participants with broader services. Some mental health services have trialled health navigators, though outcomes have been patchy and navigators too often focused on the silo of services they are associated with.

True support coordination should involve one place and one person. This person needs to ‘hold’ the child and their family during the time of uncertainty, build a relationship and create a plan that establishes what support the young person needs, then help them to access that support and navigate very complex systems. It is based on relationships and trust.

The service system should be governed by a principle of continuity of services and continuity of support coordination.

To minimise fragmentation, service providers need to commit to giving children and their families continued support (where there is demonstrated need), to avoid them being bounced around or ageing out of services before they are ready. Too often services cease supporting children due to strict eligibility criteria and a need to manage short-term costs, even when that continued support is clearly needed. Where continuity of services cannot be achieved, continuity of support coordination should stay in place.

The continued support should include securing assessments, diagnosis and handover to specialised support when appropriate for the child’s needs.

There are several ways this integrated support system could be achieved. The early intervention stream of the NDIS could expand its definition of child development to include mental health or other concerns. Or a new partnership could build on existing child development services (such as one in Western Australia) to create true linkages and coordination. In all cases, partnerships will be needed between state, territory and national governments.

Some people may argue this reform is too ambitious, too costly and too hard to achieve. Or that if the reform is so important, why are we just talking about children and not adults too? We see three primary benefits for the reform, which serve as reasons why it is the right way to go:

1. The impact lasts a lifetime. Poor services and ineffective delivery can impact a child’s life trajectory. Children’s unique period of intense development creates more opportunities for things to go wrong. Getting early access to support, getting the most out of that support, and then having the support continue can significantly improve lifelong outcomes for children.
2. It gives children agency through scaffolded support. Children lack agency so they need coordinated support to navigate the system. Their parents and carers are frequently overwhelmed, have other caring responsibilities or face their own mental health challenges and need help to access services. If we want children to access the right kind of services at the right time, we need to invest in system navigation and support coordination.
3. There is a big opportunity cost for government. Beyond the benefits for individuals, governments also benefit. The NDIS was established as a social insurance scheme that would ensure the support costs borne by government for a person are lower across their lifetime. National, state and territory government are investing significantly in these services, but the biggest return on that investment will not be realised if they do not work effectively together or serve the right people.

A radical rethink of the way we support children and adolescents will ultimately deliver better outcomes for us all. It requires us to think bigger than existing service systems.

We think governments are up to the challenge.

Get in touch to explore how we can help you better coordinate mental health and disability supports for young people.

Connect with Mhairi Cowden and Michael van Koesveld.

Prepared with support from Ian Sheldrake during his time as a Principal at Nous.