NDIS cost blowout: Culture of dependence starts with a ‘label’

Then prime minister Julia Gillard, flanked by deputy Wayne Swan and then disability reform minister Jenny Macklin, after she announced an increase in the medicare levy in 2013 to fund the NDIS. Picture: Aaron Francis

Recent reports suggest a staggering 11.5 per cent of boys and 5 per cent of girls in Australia between the ages of five and seven are enrolled in the National Disability Insurance Scheme. A decade ago, Julia Gillard fought back tears in the House of Representatives, recounting the emotional stories of Sophie, a young girl with Down syndrome, and Sandy, a young man with physical disability who would benefit from the scheme. Fast-forward to today, however, and good intentions are now buried under bureaucratic bloat and careening costs.

As the cost to the taxpayer grows by 14 per cent per year, and with the scheme projected to hit $100bn within a decade, it’s time to re-evaluate what exactly went wrong.

Let’s start with the fact that children under six can be admitted into the scheme without a formal intellectual or physical disability diagnosis. Arguably, this is not what the NDIS was intended for.

Currently, a child can simply exhibit a “developmental delay” to get on to the NDIS. Developmental delay is a jargony term that suggests a child hasn’t yet reached a milestone typical for her age. In areas such as walking and talking, delays are informative, and can be signs of something more serious that requires investigation. But in other realms, such as social and emotional development, the term is so broad it is essentially meaningless.

Sophie Deane with Julia Gillard at an NDIS event.

Johnny, for example, might be able to read, and write his own name with pencil when he starts school, but because he might have meltdowns when he struggles to tie his shoelace, or has tantrums when asked to share toys, he might be labelled as “emotionally delayed” by his primary school teacher. Alice, who might be able to trace, cut shapes and read aloud, might be identified as “socially delayed” because she is too shy to play with other children at lunch.

Are such developmental delays synonymous with disabilities? Hardly.

The differentiation is crucial. A developmental delay is not necessarily a permanent impediment. My own children, for example, had delays in some areas while being advanced in other areas. As they matured and got used to the school environment, they caught up. While developmental delays should warrant monitoring and perhaps temporary support, labelling them as “disabilities” is a step too far.

This is especially the case with energetic boys, who often find a mismatch between their rambunctious natures and the classroom environment. Classrooms today are most often led by female teachers and cater to children with compliant dispositions. The fact that a little boy may take longer to adjust to such a setting is not necessarily a sign of something wrong.

It’s taboo to point it out, but there is an incentive for teachers to label the most challenging or energetic children in their classroom as having “delays” or “disabilities” because a label means it is no longer their problem.

This is not to say that various delays, disorders and disabilities are not real, and that they do not benefit from early identification and treatment. But we have to accept we also run a risk of over-diagnosing and over-medicalising normal behaviours and transition phases in childhood – simply because it makes life easier for adults.

The NDIS over-inclusion doesn’t stop with developmental delays, however; it also extends to the Autism Spectrum Disorder. The Diagnostic and Statistical Manual of Psychiatry (DSM V) controversially subsumed Asperger’s syndrome under the autism label 10 years ago. The disorder now lies on a spectrum – from profound autism requiring 24/7 care to Asperger’s, a condition that allows individuals such as Elon Musk to lead successful, fulfilling lives.

Should children with Asperger’s, a milder form of autism, be part of the NDIS? Given that highly intelligent adults who have Asperger’s can often thrive in the workplace and live fulfilling social and romantic lives, I would argue their inclusion is probably not necessary. Such an argument isn’t against support for neurodiverse children, but questions their blanket labelling under “disability”.

Although having a milder version of a debilitating disorder should be welcomed, doctors are apparently diagnosing children with more severe forms of autism to secure them funding on the NDIS. This points to another reason for the cost blowout of the NDIS: the people-pleasing nature of many doctors.

The desire to help, characteristic of medical professionals, can sometimes backfire. The prime example of this is the opioid crisis in the US, driven by the overprescription of painkillers by the medical profession.

Anna Lembke, an addiction specialist, argued in her book, Drug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, and Why It’s So Hard to Stop, that an “illness identity” can entrap people in a perpetual cycle of sickness and disability. When an individual’s existence is predicated on having a chronic, incurable condition, it’s in their best interest to remain ill. The fact so many Australian children are already on the NDIS provides a forewarning for its trajectory.

There’s a significant danger in the over-medicalisation of naturally occurring human differences. We should indeed have robust supports for those who are genuinely in need. But we must also refrain from stretching the “disability” label to cover an ever-increasing array of conditions, developmental stages, and temporary delays.

The key is not to eliminate support for neurodiverse or delayed children, but to differentiate it from what we understand as “disability”. There is a difference between conditions requiring lifelong support and those that do not. We do our children no favours when we normalise dependence on systems designed for permanent disabilities.

The NDIS started as a vision for a more equitable society. However, as it stands it seems to be spiralling into a bureaucratic labyrinth failing both taxpayers and its intended beneficiaries.

As the line between “difference” and “disability” blurs, we owe it to both the truly disabled and those transiently struggling to clarify its criteria. If we don’t we will squander the good intent that led to the creation of the NDIS in the first place.