Kylea Tink (North Sydney, Independent) Share this | Hansard source

There is a lot of lived experience of and strong opinions about the National Disability Insurance Scheme in my community of North Sydney. Today, as I speak to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024, I will bring those voices to this place. For many, the introduction of the NDIS was nothing short of a revelation. Its mission—to provide funding to eligible people with disability to enable them to gain more time with family and friends, greater independence, access to new skills, jobs and volunteering, and to improve their quality of life—was something that resonated strongly across my community. The additional fact that the scheme was built on the principles of choice and control and an obligation to meet all reasonable and necessary requests for support was further evidence that this was something my community would embrace.

Yet, 11 years on, with the cost for the scheme blowing out beyond projections and the size and scope of it becoming increasingly unmanageable, there are concerns that it is on the edge of collapse. In reviewing the legislation today, then, my community have been clear that they want me to approach it by identifying what problems the government is seeking to address and scrutinising whether this legislation in its current form will fix those problems without compromising the scheme's fundamental principles.

The government's work to date is welcomed, and I commend the minister for prioritising reform. But I do also believe further consideration is needed to ensure we get it right. Right now, there is a significant Senate inquiry underway into this draft legislation. The inquiry has received over 80 submissions and taken testimony over two days. Due to report on 20 June, which is in just over two weeks time, the committee has sought an extension to ensure more Australians can be heard, but the request has not been granted. The inquiry has produced important outcomes, and this draft legislation should remain open to change given the current inquiry's work. The fact that debate on this bill proceeds here while the Senate inquiry is still unfolding is problematic. I ask the minister to suspend debate on this bill after the second reading phase to allow the inquiry to run its course. By doing so, all of us in this place would then be able to benefit by taking into consideration the recommendations of that committee's final report. The promise of co-design of these reforms was tested by the government's willingness to consider any recommendations from that inquiry as well as amendments suggested by my fellow MPs in this House for they have all fundamentally been informed by people with lived experience.

Assuming the progress of the legislation, however, will not be paused, I want to offer the following observations on both the NDIS and this proposed reform. In reading the explanatory memorandum to this legislation, the government makes the case that reform is required as the NDIS is too expensive, unwieldy, inefficient and causing a great deal of anguish for many participants and their families. There are well over half a million Australians currently registered with the NDIS, the majority of whom are under the age of 14. The scheme provides life-changing services and support to people with permanent disability, but it is being argued that it has lost its way and that we need to get it back to serving its core purpose.

If this is the objective of the legislation, we must ensure we do not lose touch with the reality for people for whom the NDIS was created. Like many others here, my team and I receive requests for help from participants in the NDIS every day back in my electorate of North Sydney. For too many, participation in the scheme is incredibly traumatic, and the anguish and heartache the current NDIS system is causing to many in my community is real. Most requests for help come from people who have made applications to the National Disability Insurance Agency, NDIA, for support and have heard nothing. They wait, unable to make decisions because they aren't sure what support they will have. One person told us: 'I've been told for weeks that I will receive a call back, but no-one is calling me. I don't have an option but to wait.' Another said: 'I made an application for funding for a new wheelchair, but the application was denied. Despite following up with the supporting documents requested, it's been months and I have not heard a thing. I am desperate.' Yet another said: 'I'm waiting to hear back on my son's application for support and it's been six months. We are in desperate need of support so he can continue his schooling. Can you please help me?' The scheme has left thousands of individuals highly distressed and asking me to intervene because they are getting nowhere.

These voices must be at the heart of any reform, and a selective consultation process will just not cut it. The NDIA is undoubtedly backlogged, with people in North Sydney who have been approved by NDIS waiting between three and five months for their planning meetings. While this legislation intends to introduce rules around improved access, it needs to be accompanied by a significant increase in resourcing to clear the backlog. Every individual should be able to maximise their funding to ensure they are receiving the quality of care and support they need. No two people, whether they are living with a disability or not, are the same, and each person's needs will be unique. The recognition of that uniqueness was one of the fundamental underlying principles of the original legislation. To simplify the scheme by categorising people into types may have the appeal of making it easier to manage, but we must acknowledge that that approach will also necessarily overlook individual traits. As a society, then, we must decide whether we are prepared to exact that price.

Overall, the bill seeks to create a framework to improve the scheme for NDIS participants. However, while the ambition is clearly stated, the 'how' of achieving this goal is opaque, as much of the detail of the reforms is not in the main body of legislation; it will exist in delegated legislation. This is no small thing. The government is asking the community to take a leap of faith to welcome this bill without knowing what the delegated legislation will contain. With trust in government at a record low, it's not surprisingly that many are finding that leap difficult. The value of the NDIS to date has been certainty and insurance for participants, and ultimately many feel the lack of detail in this legislation puts that value at risk. We've been assured that major reforms will not happen without consultation with the disability community. But, proposing the largest changes to the NDIS since it started, this bill is of itself major reform, and many feel they have not been heard.

It is extremely worrying that the bill introduces several new powers for the Minister for the National Disability Insurance Scheme to make rules and determinations that do not need to be passed by the parliament, including determinations in relation to choice and control. Giving this much power to the minister could expose the NDIS to fluctuating political winds. We're at a pivotal moment with legislation, and this legislation has the potential to either restore or undermine the very foundations of the NDIS scheme. Whatever we pass must be able to survive not just the current government but future governments. We need stronger safeguards around accountability and integrity to ensure the future of the scheme. We may accept that the changes that are being driven at this time come from a good place, but the devil in the detail is yet to come. We have seen far too often in this country the havoc that a change in government can wreak on legislation. The current minister is asking the community to trust him, which they may well do. But their questions are not necessarily directed at him; rather, they capture their very real concern: 'What will the next minister or the one after that choose to do with the powers we give them under this new framework?'

At the same time, this legislation turns the principle of reasonable and necessary on its head, replacing that wording with 'NDIS supports', with no detail to explain how an NDIS support will be defined other than that it will be determined by the minister of the day. I therefore join calls from across the sector for the government to release the draft rules for consideration.

Many in my community support the intent of tightening the scope of the NDIS, agreeing that we need to put people with a permanent disability back at the centre of the scheme and guarantee sustainability for future generations. They also believe it will be beneficial to increase the focus on the entry and planning phase to ensure participants start with clear expectations. Where someone's disability is obviously permanent, however, my community urges the government to ensure this legislation does not create unnecessary and emotionally taxing barriers. One father recently said to me: 'My daughter, who has been blind most of her life, is not going to miraculously get her sight back, yet at each reassessment we are required to provide evidence that her condition still exists.' We are told new rules for how functional capacity is tested as well as for how needs assessments will be undertaken will be designed to help address the backlog in applications. From the conversations I've had I know this would make a significant difference to people on the scheme. I also know, however, that if this reform misses the mark I'll be the first to hear about it.

Changes to how plans are set and how funding can be used may be necessary to rein in spending, but I understand this is a challenge for communities to get their heads around because these measures remain vague. I acknowledge it should be a positive thing that this legislation will focus on promoting and ensuring the quality of service. From not being able to access services to being shortcut when they do, the many cases of compromised care are well known by my team, so safeguards to ensure improved quality of services would be welcome. At the same time, I know this is a significant concern to many people, as they fear it will limit their ability to choose who they can turn to to provide the services and supports that are necessary for them.

The concept of empowering individuals to make their own choices and be in control of what services they access, when and how are fundamental principles of the scheme, and we need assurance that they will not be undermined. One case that has impacted me very personally, as a mother, is the contact I've had with a family who have a child with high-level needs. The family have struggled to find the right people to help their child, yet right now they have an incredible group of young people working around their son. The mother pointed out to me recently, though:

As I read it, this new legislation will mean I cannot continue to employ these young people using our NDIS funding because they are not registered carers. They are just great kids, with first aid degrees, who my son has formed a fantastic rapport with. How could an outcome that would see me take those people away from him be in the best interests of my child or my family?

It's frustrating that right now I'm not able to point to something in the legislation that can reassure her. Rather, yet again both she and I are asked to take the minister at his word, and I fear this is simply not enough.

Also of concern is the reform proposed around the provision of foundational supports. Importantly, it must be acknowledged here that a process of decentralisation is not an offload; it is a delegation. We must guarantee individuals and families that they will not experience any diminution of services. Foundational supports provided by states and territories were largely defunded in recent years as participants and service delivery were rolled in under the NDIS. To roll these back to the states and territories is going to take significant attention. While these supports are less intensive and are likely to be delivered through health services, early childhood education and schools, they are still incredibly important, and families have a right to assume the level of service will not be compromised. Without careful design of a broader ecosystem, these huge changes leave room for the reforms to fail. The states are disputing the legislation, arguing that they need clarity on what these reforms are going to mean for them, including what the cost of building them back up will be. Without this clarity, gaps in the system are guaranteed. I call on the government to ensure we maintain responsibility at the federal level to ensure no person or family is left worse off.

In closing, I argue that the success of the new framework will ultimately be reliant on its ability not only to uphold but to champion the human rights of those living with a disability and of their families. Australia ratified the United Nations Convention on the Rights of Persons with Disabilities in 2008. It exists to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms to all persons with disabilities and to promote respect for their inherent dignity. Ultimately, this bill potentially engages a range of human rights, including the rights of persons with a disability; the rights to an adequate standard of living, health and social security; and the rights of the child. As such, we should tread carefully.

I urge the government to give this bill due scrutiny, including waiting on the report from the Senate inquiry, before progressing any further through this House, and to take the amendments to be moved in this place seriously. A thriving ecosystem of disability supports across Australia must be more comprehensive than what is currently contained in this bill. I ask this government to create a clear road map on how foundational supports are expected to be managed by the states and territories, and I ask them to ensure they never stop listening to the voices that lie at the heart of the delivery of this program.

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