NDIS failing to catch children with late-onset difficulties

The rollout of the National Disability Insurance Scheme (NDIS) in selected sites in 2016 signified a shift in cultural views about disability. Historical views were based on a medical model derived from deficit, dysfunction and impairment. Today, we ask that building capacity, inclusion and access be the way forward for people and young children living with disabilities.

However, medical evidence is still required to establish entitlement, and some children with late-onset delays miss out.

Children with late onset delays disadvantaged under the medical model

Some children are born with congenital risk factors known to cause developmental delays - for example, very low birth weight, hereditary conditions, birth defects or trauma incidents. These factors ordinarily generate specialised monitoring or specific screening to identify issues as soon as possible, to enable families’ access to early childhood early intervention (ECEI).

However, not all delays in child development can be detected at birth or immediately post-partum. Late-onset delays usually present themselves at age two or three. In Australia, a universal approach to developmental health aims to capture this population of children.

A recent study conducted in a pilot NDIS site found administrators of early childhood early intervention agencies predicted children with late onset delays would be poorly served under this model.

Although developmental health checking is in place, it is grounded in a medical view of “disease prevention” and “risk”, and its effectiveness relies on contact with parents. While the administrators recognised partnerships with families are vital, they expressed concern that parents wouldn’t have the time or the support necessary to understand the impact of late onset developmental disability before having to tick a box to apply for funding. The administrators observed that the NDIS invested little in the individuality of each family and the impact of a child’s difficulties.

For parents of children with late-onset delays, an understanding of developmental concerns should be encouraged and supported in preschool.

Social disadvantage puts children at a greater risk

Today, the rates of children presenting in preschools with delayed development are increasing. This is a result of the cumulative effects of environmental factors and patterns of social disadvantage.

Many parents from socially-disadvantaged families were less likely to attend developmental health-checking systems at child and family health clinics. They miss out on developmental health monitoring and information that helps them identify milestones and markers.

Because of this, challenging behaviours known to be associated with developmental delays and intellectual disability (such as non-compliance, tantrums or aggression) are often accepted in their homes. For these parents, it can be difficult to understand them as developmental concerns. Consequently, social difficulties are only flagged as a problem once their child starts preschool.

If parents can’t understand the significance of developmental milestones, it’s harder for them to understand the notion of being “delayed” or, more importantly, the impact on learning.

Early childhood educators are well positioned to track development

Working within the Early Years Learning Framework is an essential part of any early educator’s daily work of observing children’s play, interests and social behaviour. Tracking individual progress often leads to conversations with parents arising from evolving developmental concerns about a child over time.

Early years settings, like preschools, are often the first place parents are able to have routine conversations about health information, developmental progress and the wellbeing of their child.

Flagging developmental concerns with parents is never an easy task, especially when it relates to social behaviour. Talking about these concerns may also be at odds with families’ historical views of sickness and/or their experiences of child-rearing. Parents may be reluctant to believe their children has these problems.

Crucially, at the four-year-old stage – late in a child’s development to be identifying delays – empowering parents requires trusting relationships mediated by professional report and observation. Building a family’s capacity to claim for services takes time.

How can we better support these children and their families?

Timing for access to ECEI is pivotal to a child’s future learning outcomes. This means we need to change how we view those with late-onset difficulties. A reliance on medical evidence as an entry ticket to the NDIS does little to achieve social justice for these children.

Parents of any child identified with a developmental concern in preschool should consult with a GP or paediatrician. This will mean inevitably going on a waiting list. These waiting lists could further disadvantage children who are already at risk due to social factors, and further compromise their learning opportunities. It also discounts the validity of evidence from qualified early childhood educators.

Being on a waiting list does little to support a sensible outcome for all, especially socially-disadvantaged families.

Supporting documentation from early childhood educators must be repositioned and upgraded to empower vulnerable families to access early intervention services sooner rather than later.