Autism services need overhaul

National Disability Insurance Scheme architect Bruce Bonyhady. Picture: Arsineh Houspian

As National Disability Insurance Scheme architect Bruce Bonyhady and former public servant Lisa Paul pursue their independent review of the NDIS, due to report next month, they have important points to consider in the submission put to them by the Actuaries Institute. The scheme has “medicalised” autism and created winners and losers among children with the condition and with developmental delay, the submission notes. The situation has given service providers incentives to ensure children remain dependent on therapeutic support and threatens the $35bn-a-year scheme’s financial sustainability, the actuaries warn.

Of 610,000 NDIS participants, social affairs editor Stephen Lunn has reported, 313,000 are under 18. Of those, 75 per cent have a primary disability of autism or developmental delay. They account for almost a fifth of total scheme costs. With 11 per cent of boys aged five to seven and 5 per cent of girls of the same age NDIS participants, the issue of eligibility cannot be avoided by the review, national cabinet, individual states or the Albanese government. Nor should it be, for the sake of the children.

The actuaries’ report makes a good case why children with autism would have better long-term outcomes in school- and community-based programs outside the NDIS than receiving individual supports under the scheme. The problem, however, is that state and local governments largely have abandoned the field.

A consensus on the issue appears to be emerging. As Professor Bonyhady said last month: “We must stop thinking of the NDIS as though it is a limitless magic pudding. What has become clear is that, often without intending to, ­governments, service providers and some people with disability and their families have all started to treat the NDIS as a limitless ­resource.” NDIS Minister Bill Shorten, who admits the scheme needs a reboot, said: “There’s a challenge there in how we help young kids with developmental delay.” Not everything was an NDIS matter.

The system may even be working against children’s best interests. That unintended consequence, the Actuaries Institute says, has arisen because the system gives families little choice but to seek out formal medical ­diagnoses for their children. Report co-author and senior actuary Maathu Ranjan told The Australian: “This means lengthy wait lists that can prevent timely access to early interventions, something we know is most effective when it happens earlier in a child’s life. If we provide support through community-based programs, we can bring that timeline forward, which means better outcomes for children and families and more effective government spending to achieve a sustainable NDIS.” The Actuaries Institute paper notes a serious lack of services available to families with a child with developmental delay not severe enough to secure NDIS funding. Without reform, the NDIS will continue to be a growing burden on taxpayers, possibly at the expense of Australians with serious disabilities who most need it. The review is an opportunity that must not be wasted.