The federal government’s $4 billion Thriving Kids program was supposed to be the answer. As Labor pushes ahead with the most sweeping overhaul of the National Disability Insurance Scheme since its inception, proposing to remove more than 240,000 people from the scheme and strip back $38 billion in spending, Thriving Kids was the safety net. The proof that no child would be left behind.
But cracks in that safety net are already visible, and the program hasn’t even launched yet.
This week, a member of the very advisory panel that designed Thriving Kids went public with a damning assessment. Dr Tim Jones, Child and Young Person’s Health Chair for the Royal Australian College of GPs, says the state-based model now being adopted is a significant departure from what the panel intended, and that he fears the program may have been used as political currency during broader negotiations over hospital funding, rather than designed purely around the needs of children.
“I think that ultimately it may have acted as one of the bargaining chips in securing the National Health Reform Agreement,” Dr Jones said.
It’s a remarkable statement from someone hand-picked by the government to help design the program. And it cuts to the heart of a question that is becoming impossible to ignore: is Thriving Kids a genuine alternative for vulnerable children, or is it a political instrument dressed up as one?
The timeline tells a troubling story. The Thriving Kids advisory panel completed its report in December 2025. The states agreed to deliver the bulk of the program one month later, in January 2026, meaning the fundamental structure of how the program would actually be delivered was settled after the panel had finished its work.
Dr Jones says when the panel handed over its report, members were still operating under the understanding that the federal government would take primary responsibility for delivering services on the ground. What emerged instead was a model in which states and territories would carry the bulk of that load: running parental support programs, allied health services, and capacity building for families with complex needs.
That shift matters enormously in practice. It means a family in Victoria will access Thriving Kids differently from a family in New South Wales. It means a child who moves interstate mid-program may find their supports don’t transfer. And it means the quality of what a child receives depends heavily on which government happens to be running their home state.
“I am going to struggle with knowing the quality of what we designed and worrying that that implementation will be lost through the complexity of state and territory-based rollouts,” Dr Jones said. “I’m worried about any family that moves states because the problem with complex models is they don’t transfer across state and territory lines.”
Independent MP and paediatrician Monique Ryan has drawn a sharp historical parallel. When the NDIS was first being rolled out, she notes, it was likened to a plane being built while it was flying. “We’re repeating that mistake with Thriving Kids,” she said.
If the design of Thriving Kids is contested, its political foundations are shakier still. Queensland remains the only state yet to sign a bilateral agreement with the Commonwealth, and its about why.
Camm says the federal government has failed to provide states with basic definitional clarity: there is no agreed definition of developmental delay, and no agreed framework for categorising different levels of autism severity. Without those foundations, she argues, states are being asked to build services on sand.
“They’re making commitments to families without any of the detail,” Camm said. “It’s a cost-shifting exercise from the federal government to the states and territories with little detail.”
A spokesperson for NDIS Minister Mark Butler pushed back, saying states had been given a definition of low to moderate support needs and that consultation had begun in early May. But Camm’s frustration speaks to a broader dysfunction in how these reforms have been negotiated.
State and territory disability ministers were briefed on the sweeping NDIS changes on the same day Butler announced them publicly at the National Press Club in April, a move as showing “arrogance and disrespect.” That kind of top-down communication does not inspire confidence that the federal government is genuinely building a collaborative system, rather than simply offloading responsibility.
To understand why the government is moving at this pace despite these warnings, you need to understand the financial stakes.
The NDIS now costs more than $50 billion annually, a bigger drain on the Commonwealth budget than Medicare, and closing in on defence. A scheme originally intended to support around 410,000 Australians now serves just under 740,000, with projections suggesting it could reach one million participants by 2034. The scheme’s growth rate of 11.3 per cent is, by any measure, unsustainable.
Butler has been unapologetic about the urgency. He told the ABC this week that a one-year delay to the reforms would cost $17 billion over four years, and that of further delay costs roughly $1.5 billion. Against that backdrop, the political imperative to move quickly is real, even if the human cost of moving too quickly is also real.
The Greens secured an eight-week extension to the Senate inquiry into the NDIS bill this week, in exchange for their support on the government’s capital gains tax and negative gearing changes. That delay will cost the budget hundreds of millions of dollars, Butler acknowledged, but has at least bought time for the disability community to make its case.
Whether that case will be heard is another matter. Butler has signalled that while the government is willing to adjust at the margins, the fundamental direction of the reforms is settled.
What all of this means in human terms is families caught between a scheme that is being wound back and a replacement that is not yet ready.
The stories emerging from around the country share a common shape: a family that was already struggling with inadequate support, now facing further cuts, with no clear alternative in sight.
A single mother on the Gold Coast whose son’s funding was more than halved despite his needs having grown significantly. A woman in Brisbane who is blind and deaf, watching the supports that gave her independence and connection to her community become uncertain. Young carers some of them primary school aged quietly absorbing responsibilities that no child should have to carry.
The government has maintained that no child will be removed from the NDIS until alternative services are operational. But critics, including Dr Ryan, argue the government should not be making sweeping changes at all until it can demonstrate those alternatives are genuinely in place not merely planned.
“I don’t think the government should make significant sweeping changes to the NDIS until we know that no child will fall through the cracks,” Dr Ryan said.
The chair of the Thriving Kids advisory panel, leading paediatrician Frank Oberklaid, has tried to thread the needle acknowledging that the rollout won’t be perfect, while expressing optimism about the program’s underlying aims. “This is a major transition,” he said. “I think it’ll evolve the introduction of any new approach like this is going to be messy in the first instance.”
Messy is one word for it. For families who depend on these supports to get through each day, it is a more confronting kind of uncertainty.
The political accountability for all of this is genuinely diffuse, which is part of what makes the current situation so difficult to resolve.
The federal government controls the NDIS and is driving the reform agenda. The states are being asked to deliver Thriving Kids but have varying levels of readiness, buy-in, and in Queensland’s case agreement to participate at all.
The Coalition broadly supports reining in the scheme’s costs but is preparing amendments and accusing the government of lacking transparency. The Greens are fighting the bill’s passage while simultaneously having traded an inquiry extension for tax concessions a deal that puts them in the awkward position of having slowed, but not stopped, the process.
And somewhere in the middle of all of this are the children the system was built to serve.
Dr Jones put it plainly. “I do worry in this budget-critical environment that the bottom dollar at a federal level is driving things faster than it should necessarily happen.”
A safety net, to work, needs to be in place before someone falls. Right now, Australia’s most vulnerable children are already falling and the net is still being argued over.
