Zoe Daniel (Goldstein, Independent) Share this | Hansard source

If it had not been for the efforts of the minister and especially former prime minister Julia Gillard, there would be no National Disability Insurance Scheme. People with disabilities and their families would still be trying to work their way through an inadequate patchwork of state based assistance. Many previously just fell through the cracks. As the minister put it in his second reading speech, they were 'unseen and unheard, living in the shadows'. One of them was a teenager by the name of Sandy, who Ms Gillard made a point of meeting along with many other people with disabilities as her government set up the scheme. He thanked her for making the establishment of the NDIS a personal priority. The then Prime Minister told parliament in 2013, as she introduced the legislation to give the NDIS its financial underpinning:

Sandy has big dreams for his future, like any teenager, but his future also has some big needs: mobility aids that cost tens of thousands of dollars, personal care to maintain his hygiene, physical therapy to maintain his muscles and his health.

Ms Gillard promised Sandy and others with a disability that they would finally have security and dignity with the introduction of the disability care scheme.

Over the past six years, the idea of a national disability insurance scheme has found a place in our nation's hearts.

In March, we gave it a place in our nation's laws.

Today we inscribe it in our nation's finances.

And there's the rub. At that time, the Gillard government estimated the scheme would need just $8 billion a year in federal funding when fully operational in 2018-19. If only that had turned out to be the case. But, as the Government Actuary warned the previous government in 2021, the NDIS was on track to cost no less than $125 billion 10 years from now, in 2034. In this year's budget, the cost for 2024-25 alone is estimated at $44 billion. That's more than Medicare, at $31 billion; total spending on aged care, at $28 billion; and support for state and territory hospitals, at $27 billion. It is simply unsustainable. It's what happens when the best of intentions lead to a massive program being introduced in haste with open-ended demand and careless administration by previous governments, including inadequate action to stamp out abuse. There are questions of cost, fraud and eligibility that should have been sorted out over the past decade but we are now being called on to fix.

There is also the question of trust. The minister is promising this legislation will be a downpayment in restoring the Gillard government's original vision for the NDIS. Importantly, that means maintaining the trust of participants in the scheme, their families, friends and loved ones. I've spoken to many members of the Goldstein community who do have a trust gap about the scheme. That is being further tested with so much uncertainty surrounding the details of this legislation. There is also the trust of the broader community. Lose that and public confidence and support for the scheme will disappear.

It's no easy task, especially given the bad press the scheme has been receiving for months now—some of it justified, some not—obscuring the extent to which the NDIS has changed the lives of people living with disabilities. Getting financial sustainability of the NDIS in shape must be a priority but not at the expense of the rights and wellbeing of those members of the disabled community who have been doing nothing wrong.

Here, for example, is Elly Desmarchelier, who wrote about her experience with the scheme in the Guardian:

On a personal level, the NDIS has transformed my life.

…   …   …

In the three years before I had the NDIS, I was admitted to the intensive care unit (ICU) more than half a dozen times for things as common and preventative as a UTI. In the three years since being approved for the NDIS, I have not had a single ICU admission and that's because I have access to the allied health I need to keep me from getting so sick I need a breathing tube to live.

Before the NDIS, I could not envisage a future where I wasn't reliant on my partner and parents to live—I needed their help for basic things such as showers and preparing meals. Now, with the NDIS, I have a team of people who I employ, and my partner and parents can go back to being my family, instead of carers.

My story is not unique.

People with disabilities, their friends, families and supporters campaigned for decades to deliver the NDIS. It continues to exist because thousands of people worked together to advocate and fight for this scheme during the most recent federal election. This is our scheme and, while it is imperfect, we believe in its original promise.

So do I, but it needs fixing, especially the fraud, which appears to be at epidemic levels.

In passing, it's worth noting that the government's overall approach to fraud and corruption is not helping. Kieran Pender from the Human Rights Law Centre points out that, because some charities do not have status under tax law, whistleblowers have no protection. This is yet another reminder that establishing a whistleblower protection authority, which was first suggested to this parliament in 1994 and part of Labor's election platform as recently as 2019, remains a priority and a missing link in fighting corruption and fraud. The minister in this case has been eager to stress that he is not talking about the majority of very good, dedicated service providers, but he's right when he says that it would be a betrayal of NDIS participants if he were to ignore the price gouging and unethical conduct of the small number who are having a lend of the scheme, as he put it.

Two years ago, Michael Phelan, then head of the Australian Criminal Intelligence Commission, estimated that no less than 20 per cent of disability funding in the NDIS was being abused by organised crime groups. Mr Phelan is now the Acting Commissioner of the NDIS Quality and Safeguards Commission. Since taking on that role, he reckons that criminal influence could be even worse than he originally thought. With an estimated price tag of $44 billion this financial year, that would mean that at least $8 billion worth of funding intended for people with disability is allegedly being abused by crime syndicates. Unless we bring that to an end and get the spiralling cost of the scheme in general under control, its very existence is at risk. There is reason for hope. As the Grattan Institute's disability program team puts it:

NDIS 2.0 will be better than Mark 1. It could finally banish the existential threat of uncontained cost growth, introduce consistency in the amount of funding each person gets and what they can spend it on, and ensure that only the people that need it will stay on the scheme for life.

The key to the scheme is to make sure that individual needs are recognised. While it's justifiable in the first instance to require periodic assessment, it's absurd to put a similar requirement on a person with a serious and chronic disability. The government promises this legislation will deal with that anomaly. If that is the case, that is as welcome as it is overdue. It causes immense pressure on families to have to constantly reprove that serious disability remains unchanged.

But none of this means that we should be making decisions on this legislation without full and transparent debate and discussion. The wellbeing of the 600-plus thousand people who currently depend on the NDIS should not be dismissed in haste. The Senate inquiry into the legislation only opened six weeks ago and has to report by 20 June, a tight timeframe for such a complex piece of legislation in a very complex policy area. The many submissions make detailed suggestions for improvements to the bill, and they deserve proper consideration. In recent days, the government itself has produced some of its own amendments.

The states insist that they're in no position at this point to meet their responsibilities in developing the foundational supports the Commonwealth is demanding—essentially less intensive services, notably autism and developmental delay in children, to be delivered through health services, early childhood education and schools rather than the NDIS. 'They would say that,' the government might say, but, unless the states can develop the necessary programs, the scheme risks falling over. As the states told the Senate inquiry, without careful design of this ecosystem, 'people with disability will end up in our hospitals or other settings that are unsuitable for their needs.' To date there has been no decision as to the specific services that will be provided as foundational supports or the client groups who should access them. At the moment, it's not clear what the difference in application pathway, assessment and supports will be for a child with autism who will be applying to the NDIS in 2025 versus a child with the same level of need who was applying in early 2024. States and territories expect this level of detail will be work through later this year, but it is not available now.

Federal-state relations are littered with examples of cost shifting and arguments over who is responsible for what. The Commonwealth is suspicious that, over the past decade, the states have been pushing people onto the NDIS and decommissioning programs for which they should have maintained responsibility. The fact that currently no less than 12 per cent of boys aged between five and seven are NDIS participants would appear to give some weight to the Commonwealth's suspicion, and recent data suggests that the prospect of legislative change has encouraged families to rush to secure funding for children with autism and developmental delay. In the December quarter of last year, official data showed that 11 per cent more children had been signed up than had been assumed would be, totalling nearly 10,000, with average payments 19 per cent higher than anticipated. On the other hand, it's going to take time to work through complex arrangements with the states and, if the multiple jurisdictions are going to reach resolution, delegated legislative instruments are the only realistic pathway.

The government insists that it has no intention of dumping people off the scheme, but it defies common sense to think that savings in the order of $14 billion can be achieved merely by reducing fraud and cost gouging. Stakeholders are very concerned that this legislation flips the underpinning principles of reasonable and necessary support and reduces choice and control for participants, eroding the principle that, once funding and support are received, participants should have maximum agency. They argue that, even with recent government amendments, section 10 overly empowers the minister to determine what is or is not an NDIS support. I don't doubt the good intentions of this minister, but that situation may leave the scheme wide open to erosion under a future minister or future administration.

There's also the question of the 90-day timeframe for professional assessments of need. As my colleague, the member for Kooyong, has pointed out, and she should know, this simply 'does not reflect the reality of health care in this country' where waiting lists to see specialists can be months long. The minister seeks to assure us that no-one will suffer as a consequence. That's all very well, but once again we're being asked to take a very important element of the legislation on trust, and we're being asked to assume that it will also be the view of a future administration. In fact, the minister is asking us to take not just that but several elements in this legislation on trust, and I do worry whether good intentions are enough. It's arguable that good intentions a decade ago are why we're being asked to fix so many things at once in this legislation.

Despite the reservations I've expressed, I am inclined to support this bill, but only subject to satisfactory amendments and greater clarity from the government.

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