As Erica Rojas Wood watches her three children happily play together in a Perth park, she worries days like these could be numbered.
- The NDIS has changed the lives of hundreds of thousands of Australians, with many receiving support for the first time
- But as the scheme marks 10 years, it's widely acknowledged reform is needed
- As the tussle to rein in costs intensifies, participants want the wider community to recognise it is not a frivolous expense
She's particularly concerned about the future of her six-year-old autistic son Louis, whose life has been transformed since being accepted onto the National Disability Insurance Scheme (NDIS) three years ago.
"He's cheeky. He's very affectionate and just a very, very happy little boy", Ms Rojas Wood said.
"[Before the NDIS] he was not happy. He was struggling to communicate and interact with us as a family, let alone the wider community.
"I couldn't even picture him going to school, participating in the class or being in any kind of group activity."
Thanks to his NDIS-funded weekly speech and occupational therapy sessions, Ms Rojas Wood said Louis is now not only able to attend a mainstream school, but he and the whole family are thriving.
"He can go out into the community. He's invited to birthday parties and can go without being completely overwhelmed.
"We're able to do things as a family that we weren't able to do before without any of that support."
The interim findings of a long-running review of the scheme were released on Friday. One of five key challenges it identified was that far more children were on the NDIS than expected.
Children are the fastest-growing category of participant, with data in May showing 11 per cent of five- to seven-year-old boys were on the scheme.
"With so few supports outside the NDIS, it is not surprising that parents are fighting to get their children with developmental concerns, delays and disabilities into the NDIS," the report says.
"Then, after receiving early intervention supports, they are not leaving the scheme."
The full report will be delivered in October and many in the disability community are frightened changes to the scheme may lead to cuts.
The federal government has sought to assure existing participants they won't be removed from the scheme and it is here to stay, but a lack of detail has stoked concern.
Ms Rojas Wood is nervous about what it all means for Louis.
"My concern is that Louis won't have the support he does and he's going to regress," she said.
"It'll be too expensive to fund out of our own pocket and he will become a shell of [who] he is and he won't be thriving and achieving what he is now."
'The NDIS saved my life'
This week marked 10 years since the NDIS began.
Before the scheme, disability support was fragmented across Australia's states and territories.
People with more profound disabilities struggled to access the help they needed to shower, use the toilet or eat full meals.
So disability advocates fought for change.
And after years of campaigning for a national system giving people with disability greater choice and control over their lives, the NDIS became a reality in 2013.
One of the advocates who fought for the scheme was George Taleporos.
Dr Taleporos lives with spinal muscular atrophy, a severe physical disability that means he relies on round-the-clock support.
He said pre-NDIS support was "grossly inadequate" and akin to "competitive misery", where people would try to convince decision-makers their situation was the most tragic and therefore deserving of help.
"Parents were on the brink of abandoning their kids at respite centres and people were forced to live in nursing homes," he said.
"You basically had to relinquish your child to the state to get any support."
Dr Taleporos is a doctor of psychology and hosts a podcast called Reasonable and Necessary, named after two of the NDIS's key criteria for support. It's focused on helping participants and their families navigate the system.
He said the NDIS "saved [his] life".
"I can live in my own home in my own community ... I can decide who supports me.
"It means I can work and pay taxes. I've got a PhD ... I love my life."
For all the scheme's successes, it's been far from perfect.
Fraud and bureaucracy have plagued the system for years. Participants also cite a lack of transparency around how decisions are reached, and increasing numbers of people are going to the Administrative Appeals Tribunal to fight cuts to their plans.
Attempts to roll out the hugely contentious independent assessment reforms in 2020 caused a loss of trust that the scheme is still trying to earn back.
Disability support outside the NDIS remains scant.
And then there's the financial situation.
The scheme supports nearly 600,000 participants, and annual spending on it has grown to more than $35 billion.
Its cost is projected to reach $97 billion by 2032-33.
Earlier this year, the government announced an annual growth target of 8 per cent to try to reign in costs. Spending is currently growing at a rate of around 14 per cent each year.
NDIS Minister Bill Shorten is confident the government can make sufficient savings by cracking down on issues such as fraud and price gouging, rather than by targeting participant plans.
In an interview with the ABC, Mr Shorten said the government was not looking to "slash and burn" the scheme, but that it was important to understand not all disability support could be run through the NDIS.
He said there were two obvious areas for change.
"One is to make sure that the [National Disability Insurance Agency, which runs the NDIS] is working properly.
"And then I think the review needs to make sure that we're clear about eligibility, what the rules are, and … everything we do is based on the best possible evidence."
'An investment, not an expense'
Something disability advocates say has been missing in discussions about the scheme is how it boosts the ability of participants — and those around them — to work and contribute to the economy.
In 2021, modelling by the Per Capita think tank showed every dollar spent on the NDIS injected $2.25 back into the economy.
"We need to see the NDIS as an investment in people's lives. It is not a frivolous expense," Dr Taleporos said.
One of the many people helped back into work by the scheme is Ben Andrews.
The 32-year-old lives with Down syndrome and joined the NDIS when it was in its pilot phase. That allowed him to get customised hospitality training, which led to his first job.
Now, he's nudging towards a decade of service at a Newcastle cafe, The Happy Wombat, having become the longest-serving employee.
"I like making coffee in the morning and pulling beer in the afternoon," Ben said.
"I like my colleagues and my boss. They make me happy."
Ben was a homebody before the NDIS.
His dad Gary said Ben now gets out of the house to go to work, and cycles more than 100 kilometres a week.
"His independence has increased enormously and he has that confidence to just go out in the community now," Gary Andrews said.
Ben's employment is part of Fair Work's Supported Wage System. That means he does not receive the award wage, but a lower rate based on the tasks expected of him during an average shift, which are not exactly the same as other employees'.
It's a contentious scheme but Gary said he was comfortable with Ben's arrangement, saying his job had provided far more than just money.
"It's all about trying to build Ben into an independent person who can live in the community, and that's on its way now."
Gary said a resilient and effective NDIS was imperative for Ben's future.
"[My wife and I] are not going to be around forever and we need to continue to develop Ben, through the support of the NDIS, into being an independent person, so that when we're not around he can pretty much look out for himself," he said.
"I know the public don't want to pay any more than they need to, but from where we sit, it's a program that's certainly worth it — and we hope it continues forever into the future."