Steve Robson
Health Minister Mark Butler faces a delicate balance ensuring tens of thousands of autistic children don’t lose vital support as he moves them from the NDIS to his new Thriving Kids scheme.
In August this year Health Minister Mark Butler announced his commitment to moving tens of thousands of Australian children from the National Disability Insurance Scheme to a new program to be called Thriving Kids.
That the government found this action necessary came as no surprise. Across the community the question was being asked: How did we end up in a situation where 40 per cent of all NDIS participants – close to 300,000 – have autism as their primary diagnosis?
In the most recent financial year $9.5bn of NDIS spending went to children with autism, the average payment about $33,000 a year. Official records suggest 17 per cent of NDIS participants with an autism diagnosis have “poor functioning”.
When the Productivity Commission first recommended Australia establish the NDIS back in 2011, it had estimated that only about 9 per cent of all NDIS participants would have autism as their primary diagnosis.
Efforts to control increases in NDIS spending have broad support. By the end of the decade it seems likely that close to $60bn will be spent on the scheme annually, a sum that could exceed the defence budget.
Investment in early intervention can give young children their best quality of life. Picture: iStock
Yet carefully targeted spending on early intervention in children with severe autism delivers longer-term economic benefits. Economists estimate that $1 spent on early intervention delivers $6 in savings across the lifetime of a child.
Who’s in and who’s out
The challenge facing Butler is how to identify children with autism who don’t necessarily need the type of intensive early therapy that the NDIS can provide, while ensuring that his new reforms don’t do more damage to vulnerable children and their families. This will not be easy.
The number of Australian children with a diagnosis of autism continues to increase and the reasons remain unclear. Changes in the criteria used to make the diagnosis certainly have expanded, and groups in which there had been a historical tendency to miss the diagnosis now receive more attention.
Yet the rate of increase in Australia is exceeding other similar countries. Many people suspect that something else is driving this concerning trend.
Research conducted at the Australian National University appears to show that the introduction of the NDIS has increased the number of children who were given a diagnosis of being on the autism spectrum.
This finding should not be too big a surprise as desperate parents look for help and support in caring for their children.
Federal Health Minister Mark Butler. Picture: Ian Currie/NewsWire
Butler clearly understood this point. At his National Press Club address he described the NDIS as the “only port in the storm” for families with children affected by autism. That certainly is the experience of tens of thousands of families.
As the NDIS was rolled out across the country, other services funded by state and territory governments dried up. This has left a service black hole that has stranded many families seeking support for children growing up with neurodevelopmental conditions.
Ensuring that the baby isn’t thrown out with the bathwater will be critical. Changes to the way the NDIS operates, legislated in 2024 under the name Back on Track, have already had major unintended effects on many children under the age of nine.
Those cuts to the NDIS stripped back funding for young children with severe and profound autism by as much as 75 per cent, with treatment limited to two hours of community-based therapy.
Evidence-based best practice recommends up to 25 hours a week of an autism-specific program.
Optimal outcomes
The best outcomes for severely affected children are delivered when there is personal attention – perhaps one therapist for three children – and the care is provided by a team of skilled occupation and behavioural therapists.
Because the NDIS now promotes “naturalistic” settings, dedicated and specialised services for children with autism don’t meet these criteria, forcing parents to manage treatment in their own homes or in mainstream schools.
This is a significant problem as the demands of caring for a child with profound autism often take one or both parents out of the workforce, at a time that Australia faces an employment and skills crisis.
Mainstream schools can be a daunting prospect for some children with very severe autism, ANU professor Steve Robson says. Picture: iStock
Children with the more severe forms of autism find social environments a challenge. Their condition can make communication extremely difficult, and the types of behaviours and responses that many affected children exhibit make a typical school environment seem extremely threatening.
Social interactions in mainstream schools can provoke severe anxiety responses and worsen mental health problems that can be misery-inducing for children with autism and set back their progress in therapy.
The number of children with a new diagnosis of very severe autism – the group that gets the greatest benefit from intensive autism-specific treatment at a young age – is only a few thousand a year. It is not an enormous group. Yet last year’s NDIS changes already have caused substantial disruption to many families struggling to provide care to children with profound autism.
Children with less severe forms of autism – the majority – do not necessarily have this requirement for intensive treatment from a young age. They are less likely to experience problems in mainstream school settings. Indeed, educational environments that are inclusive ensure that all children have access the best possible education.
Across the community, families of children affected by autism will be watching developments closely, anxious that a further overhaul of the NDIS will undo the good work being done for younger children at a critical time in their lives.
Now that Butler has committed to tackling the issue head-on, he has a challenging task ahead. Will it be possible to ensure that the tens of thousands of children who need intensive therapy still receive the care they need – when they need it most – while ensuring that other children can still access treatment too?
Despite so much discussion about autism around the country, many Australians don’t have a full understanding of what autism is and why it is important. That has contributed to a cloud of suspicion and a sense that people are taking advantage of the generosity of the NDIS.
What is autism?
Autism seems to result from a change in the way the cells in the brain connect with each other. It is not clear why these changes occur, but they likely occur very early in development. Indeed, it is likely that many of the changes occur before birth.
There is no cure, but good-quality therapy can ensure the best possible long-term results.
Autism results from the way cells in the brain connect with each other. Picture: iStock
With autism-specific treatments that begin early in life, children have the best chance of living independent, fulfilling lives and participating in the workforce.
Unfortunately there also is no single test that identifies whether a child is affected by autism. No blood test or ultrasound can be definitive. Making a diagnosis requires careful assessment by skilled experts. Undertaking this task in young children, many still only toddlers, is exacting and often complicated.
Ensuring that young Australians with autism receive an accurate diagnosis early in life will set them up for the best possible outcomes as they grow into adults. Getting this right is a global challenge.
Australia is fortunate to have the NDIS and it has transformed the lives of hundreds of thousands of people and their families. It isn’t perfect and certainly the scheme needs attention now if it is to fulfil its mission across the decades ahead.
Getting the diagnosis and management of autism right for the next generation of Australians should be high priority, not only for the NDIS but also the whole country. If we truly want our children to thrive, then time spent listening to affected families and making sure that reforms are evidence-based and kind is critical.
Getting it wrong will cause misery and economic hardship for tens of thousands of families.
The stakes are high indeed.
Steve Robson is professor of obstetrics and gynaecology at the Australian National University and former president of the Australian Medical Association. He is a board member of the National Health and Medical Research Council.
This column is published for information purposes only. It is not intended to be used as medical advice and should not be relied on as a substitute for independent professional advice about your personal health or a medical condition from your doctor or other qualified health professional.
Professor Steve Robson is one of Australia’s most highly qualified surgical specialists, researchers and teachers. He works at the Australian National University Medical School and has served as president of the Australian Medical Association and the Royal College of Obstetricians and Gynaecologists. In addition to holding two research PhDs Steve has degrees in genetics, public health, and health economics. He has served with the National Health and Medical Research Council, the Australian Medical Council, and in multiple other national and international roles. Steve has been the author of hundreds of medical journal articles and textbook chapters. He served as a Medical Officer in the Royal Australian Navy in the first Gulf War where he received a citation for meritorious service. Steve is a Fellow of the Royal Society of Medicine.