17/05/2026
The Australian Neurodivergent Parents Association - ANPA is doing some phenomenal work! Get around them!
Federal Labor are experimenting on Disabled People.
Read on to understand why we say that.
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Today, we sent the following letter to Josh Burns MP after an exchange at this afternoonās Joint Committee of Public Accounts and Audit hearing into the administration of the NDIS.
During evidence from Belinda Kochanowska, Principal Solicitor at Intrepidus Law, discussing pricing, providers, and the NDIS architecture, Mr Burns asked: āWhy do you refer to it as a market?ā
Her response was simple: āBecause it is a market.ā
More precisely, the NDIS is a regulated quasi-market. That means Disabled people hold purchasing power and choose their supports, while the Agency regulates pricing and market settings.
That design was not accidental. It was a deliberate response to the block-funded systems that came before, where institutions held the power, providers controlled access, and Disabled people were expected to fit around whatever was available.
What concerned us today was the apparent discomfort with that foundational design principle.
Because if the real policy objective is a return to more centralised control, then Australians deserve an honest conversation about that.
Disabled people should be leading that conversation, not having fundamental changes made around us.
Australia has obligations under the UN Convention on the Rights of Persons with Disabilities, including meaningful participation in decisions that affect us.
Nothing about us without us. We are not 'guinuea pigs'. We are citizens, with rights.
Jenny McAllister Mark Butler MP Anthony Albanese Ali France MP Senator Jordon Steele-John Intrepidus Law
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Dear Mr Burns,
I am writing following your exchange this afternoon with Ms Belinda Kochanowska at a hearing of the Joint Committee of Public Accounts and Audit.
I write because the questions you raised go to the heart of an important live national conversation about the future of the NDIS, participant autonomy, and the balance between stewardship, reform, and rights.
I write as President of the Australian Neurodivergent Parents Association, and as a mother whose own family has experienced both the systems that came before the NDIS and the difference that genuinely individualised disability support can make when it works as intended.
I watched your exchange with close attention, not because disagreement about disability policy is inappropriate, but because the question you asked appeared to reflect something deeper than a disagreement about terminology. It reflected an ideological position.
When you asked why Ms Kochanowska described the NDIS as a market, it raised an important question about how current Labor MPs and Senators understand the Scheme's original design logic and exactly why that design was chosen.
Disabled people did not fight for greater control over our supports because markets are inherently virtuous, nor because we wished to be commodified. Disabled people are not commodities to be traded, but neither are we passive recipients of centrally determined care arranged by institutions that presume to know what is best for us.
The NDIS was not accidentally designed as a regulated quasi-market. That architecture was a deliberate response to what came before. The NDIS was designed as a quasi-market to shift power away from the State and toward Disabled people, because that imbalance had long provided the conditions for unchecked harm and subjugation.
Before the NDIS, disability support was largely delivered through block-funded systems in which governments funded organisations, organisations determined what services existed, who could access them, when they could access them, and on what terms, and disabled people were expected to shape our lives around whatever the system happened to offer.
Many of us remember that world vividly. We remember waiting lists that stretched into uncertainty, provider gatekeeping, and being told what was available rather than being asked what was actually needed.
We remember having little meaningful say over who entered our homes, how support was delivered, or whether any of it bore any resemblance to what most Australians would recognise as an ordinary life. For this reason, we share solidarity with the struggles of women, First Nations people, CALD people and of course, q***r and LGBTQI people. There is resonance and solidarity between all who know what it is to live without choice and control.
A regulated quasi-market was considered the most practical mechanism for shifting power away from institutions and toward disabled people themselves. When funding follows the individual, rather than being held within provider organisations, disabled people gain greater capacity to choose who supports them, leave poor or unsafe services, negotiate arrangements that reflect the realities of their own lives, and pursue ordinary goals such as parenting, education, employment, and community participation.
The policy purpose was never commodification for its own sake, but autonomy, choice, and self-determination in line with the principles of the UN Convention on the Rights of Persons with Disabilities. Imperfect though it is, and clearly in need of stronger stewardship and regulation, a participant-directed quasi-market remains the most credible mechanism within a mixed economy for preventing the concentration of power back into institutional hands and for giving practical effect to disabled peopleās rights as citizens rather than passive recipients of care.
From a distance, the system before the NDIS may have looked orderly, but it was abusive and inadequate for its users - Disabled people. Ultimately, the State was our abuser. It may have appeared administratively tidy, and perhaps even ideologically cleaner to those who instinctively prefer centrally directed public systems. But the question that matters is not whether a system appears cleaner, better, or easier to manage in theory.
The paramount human rights question, given our signatory status to the Convention, is this: better according to whom?
Better for government? Better for administrative simplicity? Better for institutional control? Or better for the people whose dignity, autonomy, and daily lives are directly shaped by those decisions?
For historically marginalised groups, this distinction is not abstract.
Labor has understood this in other contexts. Marriage equality was not a market proposition, but a recognition that individual, equal citizenship, dignity, and autonomy matter, and that the state should not determine that one minority groupās rights matter less than anotherās. Labor has also supported stronger access to individual justice protections where structural inequality makes rights difficult to enforce in practice.
The principle is familiar: where power is unequal, safeguards matter. Individual rights and choice are a safeguard for Disabled people.
Disabled people know this intimately, because our history includes exclusion, segregation, institutionalisation, substitute decision-making, restraint, seclusion, and systems - in which others exercised extraordinary control over our lives while insisting it was for our own good. That history is not distant for many of us, which is why questions about autonomy are not merely theoretical now - and frankly, never have been.
My own family knows this personally. There was a period when we were living in constant crisis, not because we lacked love, effort, or commitment, but because disability-related needs were not being properly understood or appropriately supported for myself as a parent or my child. We lived under scrutiny and fear, including child protection involvement, while trying to survive systems that often saw our dysfunction rather than our unmet need.
Life became frighteningly small. The horizon narrowed to the next crisis, the next intervention, the next attempt to hold everything together. Then, we became NDIS participants - and everything changed. Importantly, the supports we have received have been directed by us, tailored to us, and responsive to us - because Disabled people are of course, not homogenous.
Disability support provision that aligns with our responsibilities under the UNCRPD are not possible without individual rights that elevate protected classes toward equity. We must be afford equal rights before the law.
Life is still not easy, and disability does not of course just disappear because support arrives. We still struggle, as many families do. But access to appropriately individualised support changed our trajectory in a way generic systems never could. My child remains safely with his family and community, and I remain able to parent, study law, lead in my community, and advocate for others. That does not mean everything is fixed. It means that support designed around actual need, rather than system convenience, worked.
That is why questions about participant control matter so deeply.
So I ask respectfully whether disabled people themselves have been asked whether we want less autonomy, whether the reasons power was intentionally shifted away from institutions and toward participants have been properly considered, and whether discomfort with the architecture of the Scheme reflects disabled peopleās lived experience or a broader ideological instinct about how public systems should operate.
Why should one thread of Labor ideology prevail over our basic rights, and our lives? Why should this be done to us, in a way that Labor would not consider 'doing to' another group, such as women?
There is a meaningful distinction between reform and paternalism, and that line is crossed when institutional power substitutes its own judgement for the clearly expressed rights, voices, and lived experience of the people who must live with the consequences.
The current NDIS is far from perfect. There are serious failures in stewardship, pricing, access, workforce sustainability, and market design. But governance failure is not proof that disabled people should surrender autonomy, nor does a poorly governed system justify defaulting power back to institutions.
Article 4(3) of the Convention on the Rights of Persons with Disabilities exists because marginalised groups have repeatedly been subjected to systems designed without their meaningful participation. Consultation is not a courtesy. It is a safeguard against paternalism.
Minority communities understand that dignity is not simply about receiving services. It is about belonging, voice, agency, and being recognised as a full participant in decisions that shape your life.
Disabled people are not merely stakeholders in this debate. We are the rights holders, the most important voices, the ones whose future is at stake if Labor does not grasp this core concept in time - and I hope, in response to my letter, you will reflect carefully on why so many disabled Australians are reacting so strongly when our autonomy is treated as negotiable.
If you can grasp why society should adjust for women's rights, you should also be able to grasp why it should adjust for the rights of Disabled people.
Respectfully,
Sarah Langston (she/her)
President
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Image Description: Josh Burns MP in the Parliamentary Chamber, wearing a dark blue suit and glasses. He is standing.
