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Boys in regional and disadvantaged parts of the country are joining the National Disability Insurance Scheme at up to three times the rate of their inner-city counterparts, in a sign the scheme has become a lifeline for families of children who lack school support or the ability to get help privately.
Families who can’t get help for learning delay at school or access services such as speech therapy in the private system are driven to the NDIS for support. Once eligible, children can linger on waitlists for months, especially in regional areas where services are in short supply, and stay in the system for years.
Families who need help with development delay are forced into the NDIS, where their sons linger on waitlists for specialist treatment. Credit: istock
More than one in eight boys are on the NDIS in some parts of the country, demonstrating the scale of the challenge that school systems and early childhood centres face when they are asked to step up support for children with autism and developmental delay, who continue to make up the bulk of new participants on the NDIS.
Education ministers are under pressure to turn around results for thousands of children struggling with reading and maths, and to fix a stark achievement gap between students in cities and regions exposed in last month’s NAPLAN results.
But they will also be called upon to help reverse a staggering NDIS bill that is forecast to reach almost $100 billion within a decade without dramatic interventions to reduce families’ dependence on the scheme.
The Mid North Coast and Hunter New England regions of NSW have some of the highest levels of NDIS uptake in Australia for children up to 14 years old. In the Mid North Coast, 12.5 per cent of boys aged 7 to 14 are on the scheme and 10.5 per cent of boys up to the age of 6 are participants.
That is almost three times the rate of some parts of Sydney, particularly in the city’s wealthier north and east. In North Sydney, where participation is lowest in the state, just 4.4 per cent of older boys are on the scheme and 3.8 per cent of younger boys are participants.
It is similar in Victoria, where inner east Melbourne has the state’s lowest rates of participation: 5.5 per cent for older boys and 5.2 per cent for younger boys.
This contrasts with the Loddon area, in northern Victoria, where 11.6 per cent of older boys and 8.7 per cent of younger boys are on the NDIS. In the Brimbank Melton district in outer Melbourne, 10.7 per cent of older boys and 9.5 per cent of younger boys are participants.
Kate Martin manages early intervention for disability provider Aruma in Tamworth, which is in the Hunter New England region of NSW where participation rates are 10.5 per cent for older boys and 8.6 per cent for younger boys.
She said there was a particular challenge getting therapists to work in regional and rural areas and that when families finally get access to services, “they tend not to let go”.
“The challenge in the early intervention space is where do you stop? And in regional areas, who do you refer them onto? The waitlists are huge, and families can wait a long time,” she said.
Skye Kakoschke-Moore, the chief executive of Children and Young People with Disability Australia, said one of her organisation’s recent surveys found only 27 per cent of students with a disability felt supported to learn in their classroom.
“I think that reflects the dire state many schools are in. They’re under-resourced, and they don’t have teachers trained in providing inclusive education and support,” she said.
Experts say perverse incentives are driving families to seek more severe autism diagnoses to receive support for their struggling kids, as schools and early childhood systems are not providing enough support.Credit: Getty
Martin said her clinic had 32 families on their waitlist, some of whom had been without services for more than a year. She said waitlists for community health services in the area were also about a year long.
“I’d be the first to say NDIS has done some wonderful things in the landscape of early intervention. It’s opened up individualised support for families who would be otherwise waiting a long time to receive block-funded services,” she said.
“Rather than completely removing it, we need to have other options for children in the 0 to 9 age group … so they don’t necessarily need to go on the scheme.”
Nationally, pockets with the highest uptake also include parts of Adelaide, and regional South Australia and Queensland. In Bundaberg, 11.5 per cent of boys aged up to 6 are on the scheme and in Northern Adelaide, 14.6 per cent of boys aged 7 to 14 are participants.
The lowest rates of NDIS participation are in the most remote parts of the country, such as the Northern Territory and remote Western Australia. The Barkly region in the central NT has just 1.2 per cent of young boys and 3.3 per cent of older boys on the NDIS, further complicating the equity gap the scheme has identified it needs to do more to close.
The data suggests the NDIS is picking up multiple layers of disadvantage, given lower socioeconomic status has generally correlated with a higher risk of development delay.
Kakoschke-Moore said mainstream schooling often led to the best outcomes for both students with disability and their peers – reinforcing the view that children were best off in an inclusive environment rather than isolated settings.
However, it would require changes to the curriculum, training for teachers, more resources for them to adapt the curriculum for students, and programs that provide wrap-around support for students on school grounds, such as specialist teachers.
Education Minister Jason Clare said all students, including those with a disability, should have access to a good education and be supported at school.
“Funding is important, but so is what that funding is invested in. That’s why I’ve asked an expert panel being led by Dr Lisa O’Brien to give advice on the practical reforms that could make our education system a lot better and a lot fairer,” he said.
“These reforms will help students most at risk of falling behind to catch up, including students with disability.”
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