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By Sarah Langston
For many families in the Blue Mountains and Hawkesbury raising disabled children, the Thriving Kids reforms are not an abstract policy debate. They raise a simple, serious question: will our children still have legal rights to the supports they need, or will those rights be replaced with programs we cannot challenge?
Since mid-2024, disabled people and parents across Australia have been asking the same thing: how could the government do this to us? This is not emotional overreaction. It reflects the hard-earned experience of the critical difference between support that is guaranteed by law with a right to appeal if it isn't right or enough and support that depends on what the government feels like giving you, with no way to challenge decisions.
Families here understand this difference well. When support is a legal right, you can challenge bad decisions, change supports that are not working, and insist your child is treated as an individual. When support is delivered through programs, you are expected to accept what is offered, whether it fits or not.
Why the NDIS Mattered
The NDIS was created because Australia’s old disability systems failed. They were limited, block-funded, and discretionary. The Productivity Commission found they left people undersupported, excluded, or waiting indefinitely.
The NDIS changed this by putting disability support into law.
Under the NDIS Act, decisions about access and supports must be made for each individual and can be reviewed. If a plan is wrong, it can be challenged. If support stops working, it can be changed. These are legal protections, not goodwill.
For families in regional and peri-urban areas like the Mountains and Hawkesbury, this matters even more. Services are fewer. Travel is harder. Fit and continuity are critical. Choice and review are often the only safeguards families have.
A Longstanding Tension
Although the NDIS passed with bipartisan support, it has never sat comfortably within government. A scheme based on legal entitlement is harder to control. It allows people to push back.
Over time, governments have tried to narrow this by standardising decisions, limiting review, and reframing entitlement as a “service pathway”. These changes are usually described as reform or stabilisation, but families recognise the pattern. When rights become inconvenient, they are treated as a problem.
What Thriving Kids Changes
On paper, Thriving Kids does not openly remove children’s rights. The risk lies in how it operates.
If young children are diverted from individual NDIS plans to pooled or program-based supports, decisions about what is “enough” are no longer made on a child-by-child basis. They are made at a system level. When that happens, families lose the ability to challenge a poor fit or inadequate support, and they won't get to choose what types of therapy their child gets, the intensity or where and when it is provided. Unless the government decides to offer that. All the control will move back to the government, and away from parents on behalf of their children.
This is not a small technical change. It is a step back to an uneven, unsafe power dynamic the NDIS Act was written to end. More than money, more than support, the NDIS Act gave Disabled people rights, not welfare.
Children are usually the first group affected by backward political shifts. They do not vote. Their interests are carried by parents who are often exhausted, many of whom are disabled themselves - so they're the perfect place to start dismantling legislation. This kind of undoing relies on people being too tired, or not informed enough, to recognise what is happening and act to stop it. Harm to those kids also often appears later, when development stalls or families reach crisis. That's another good reason why these kids were a sitting duck for an attack on their rights.
Why this is especially risky for Neurodivergent children
Neurodevelopmental disabilities are highly individual and change over time. What works one year may not work the next. This is why individual assessment and review were built into the NDIS.
This principle does not stop at childhood. Adults with fluctuating or episodic disabilities also rely on adjustment and review. Children are not an exception to entitlement. They show why it exists; why it is so necessary.
Cost and sustainability
Families are often told that legal rights make the Scheme unaffordable. The law already requires supports to be effective, beneficial, and value for money. Review exists to stop money being wasted on supports that do not work.
Poorly matched support does not save money. It shifts cost into hospitals, schools, child protection, and families’ own lives.
Removing rights does not reduce cost. It delays it and increases harm.
The choice ahead: rights or welfare?
The government does have options. Foundational supports can exist without cutting children off from individual entitlement. Early support does not need to come at the cost of enforceable rights.
At its core, Thriving Kids reflects an unresolved choice: whether disabled people, including children, are recognised in law as individuals with rights, or treated as groups managed by programs.
Families in the Blue Mountains and Hawkesbury are not asking for special treatment. They are asking to keep the legal protections Parliament deliberately created, especially for children, whose best interests were meant to come first.
When rights are walked back for one group, that movement rarely stay contained. There is still time to choose differently and to stand strong on the NDIS - and demand rights, not welfare.
