Under strain, Australia's world-leading disability support faces major restructure Image source, SuppliedImage caption, Annabelle Shaw relies on NDIS funding to support activities that help her live a normal life ByKaty WatsonAustralia correspondent Published6 hours agoAnnabelle Shaw is hockey-obsessed and on a winning streak, scoring eight goals this season for her team, the Panthers."I don't give up," she says proudly, adding that whenever she scores, she celebrates with a cartwheel.And when Annabelle's not on the pitch, she's down at the gym. She likes nothing more than working out with her friends.But Annabelle may soon have to stop playing her favourite sport.The Year 8 student from Western Australia has Down Syndrome – a genetic condition caused by an extra copy of chromosome 21 which leads to physical and intellectual disabilities. This enables her to access funding through one of the world's most progressive disability support programmes, the NDIS (National Disability Insurance Scheme).Aimed at people with lifelong and severe disabilities, NDIS was created to ensure disabled Australians had greater independence and an improved quality of life.Its design ushered in a very different approach to disability support – by providing people with funding based on their individual needs, and a certain amount of freedom to choose how to spend it. The scheme put disabled Australians and their families at the heart of the decision-making.But the success of the scheme has also been its undoing – it's growing rapidly and costing the government too much. Now, under proposals introduced by the federal government earlier this year, tighter controls will be introduced to shrink its size and budget.The money Annabelle receives is intended to help pay for therapies such as speech, as well as a support worker to help her on the hockey field."Annabelle needs somebody to break it down and say, okay, did you hear that, Annabelle? We've got to stand over here," says mum Gillian Croft, explaining the importance of a support worker for Annabelle at practice sessions, where there could be as many as 50 girls training at a time."Sometimes, especially if it's fast-paced, she disengages and she doesn't want to play because she doesn't understand what she needs to do."The NDIS Amendment bill passed the House of Representatives at the beginning of July but was then delayed, extending a Senate inquiry into the changes at the same time. The report into that inquiry is due on 14 August. Shortly after, the legislation is expected to pass in the Senate. The implications of the changes, say participants, could be huge.The growth of NDISAnnabelle is one of more than 700,000 Australians who access NDIS funds.The scheme was introduced under former Prime Minister Julia Gillard in 2012, although it took until 2020 for Australians across the country to be able to fully access its funds."Disability can affect any of us, from when you're born to a child's development, through the blink of an eye on a country road, through your genetic lottery as you age," Bill Shorten, Vice-Chancellor and President of the University of Canberra told the BBC. Shorten was instrumental in setting up the NDIS as then Parliamentary Secretary for Disabilities."What really makes disability hard is a lack of money and a lack of power," he explained, adding that the NDIS has enjoyed support from across the political spectrum.Image source, GettyImage caption, Bill Shorten played a key role in setting up the NDISWhen the NDIS started, it was estimated it would cost about $22bn a year, with about 475,000 participants. But this financial year it has ballooned to $54bn and the scheme now supports more than 700,000 people. Those figures are expected to keep growing, which is why the government is proposing a massive reset."It has grown too big too fast," says Hannah Orban, Senior Associate at the Grattan Institute and co-author of a report Saving the NDIS. According to her research, each of the participants receives an average of approximately A$65,000 ($44,800) of funding per year. Some, such as those with complex needs, receive considerably more; others receive far less."It costs a lot of money to run it and the government really does need to introduce good reforms to make it more sustainable so that it is here for generations to come," Orban says.Before the NDIS, disability services differed across states. There was criticism that they were underfunded and inefficient. The NDIS brought in a game-changing new system but in doing so, all the other services that previously provided support fell away."Once we created the NDIS, there was a retreat from other disability services, so hospitals, schools - you name it - everything became an NDIS matter," says Shorten.In 2024, changes were made to rein in ballooning costs – overseen by Shorten who had coincidentally returned as the Minister for NDIS. But that wasn't enough. Numbers kept growing. There's been a rapid increase, especially in the number of children accessing the scheme.There's also been criticism that people are using the NDIS to access support not originally intended for the scheme, which was designed to address the needs of those with permanent or significant disabilities. According to a study by the Australian National University, external, there's been a 32% increase in the prevalence of autism since the NDIS was introduced. Experts, however, say the explanation for this is simple."People went into the NDIS because other systems were failing," says Jenny Karavolos of Australian Autism Alliance, who in June gave evidence at a parliamentary inquiry into the cuts. It may be that autism diagnoses have increased - but Karavolos argues that's because people need to access the right support. It is not, she believes, what's breaking the NDIS.Reining in fraudOne of the other criticisms of the scheme has been that providers have gamed the system, offering unnecessary and expensive services."Where there's go
