Helen Haines (Indi, Independent) Share this | Hansard source

I rise to speak on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. As Australians, we should be proud of the NDIS. Those in this place who voted for its passage in 2013 and those of us who have seen the scheme through to its 10th anniversary all know what a life-changing difference this scheme has made to so many people. For people like Ian from the Murrindindi Shire in the south of my electorate, the NDIS has been transformative. Ian says that the NDIS funded supports 'allow me to live independently by helping me with tasks I struggle with on my own'. With NDIS support, Ian is empowered to volunteer at the local radio station and cast a line in some of his favourite local rivers. Ian says, 'If I didn't have these supports, I wouldn't be living the life that I want to live—independently and to the fullest.'

The NDIS reflects the best of Australia, a country that showed its commitment to providing a decent quality of life for all, including those with disabilities. It shows the understanding that, when we help others to thrive, we all benefit. In my first speech in this place, I said:

This parliament must work conscientiously to ensure that the incredible system the NDIS was set up to be lives up to the promise and hope felt by so many when it was created.

In 2020, I said:

We all have a stake in a properly functioning NDIS, not only because we all might need it one day but because a society should be judged by how it treats its most vulnerable …

These statements are as true today as they were then.

Since being elected as the Independent member for Indi, I have consistently advocated for the 4,700 NDIS participants in my electorate, who face unique challenges in accessing and benefitting from the NDIS. When the Tune review into the NDIS occurred in 2019, I was, in fact, the only member of this place to make a submission. I called for the implementation of participant service guarantees, which would increase choice and control for NDIS participants. Because this was the most common NDIS issue I heard about from my constituents, I ensured that this was heard by the review. I will continue to fight for a better NDIS to ensure it is delivering for all Australians, particularly those in regional, rural and remote Australia, whose challenges in accessing the NDIS are all too real.

While as Australians we should be proud of the NDIS, that doesn't mean we should not always be asking: How can this system be better? How can we better meet the needs of Australians living with disabilities either through the scheme or outside it? How can we better meet the original intentions of the NDIS? How can we uphold proper ethical and governance standards? How can we ensure that it is delivering for Australians in regional, rural and remote Australia? These are the questions I ask myself as an Independent when I am assessing the reforms put before us today.

The NDIS does need reform. Any scheme of its size and significance will require changes over time. That's why I supported the recommendations of the 2019 review into the NDIS Act and I welcomed another comprehensive review handed down just last year. I am committed to creating an NDIS that will outlast all of us in this place so that the next generation couldn't imagine an Australia without it.

I identify eight major ways the NDIS is likely to change because of this bill. These will be implemented by changes to the NDIS rules, legislative instruments prescribed by the minister and negotiated with states and territories. Some of these changes are less controversial. These include requiring the National Disability Insurance Agency, the NDIA, to clearly state whether a new participant entered the scheme through a disability pathway, an early intervention pathway or both; creating the legislative basis for the new early intervention pathways; clarifying that NDIS participants can only spend their budgets in accordance with their plan; and increasing the powers of the NDIS Quality and Safeguards Commission to stop banned persons from working in NDIS auditing services.

However, other proposed reforms are causing palpable anxiety in the community. Firstly, there will be a new definition of eligible NDIS supports. This new definition will be based on the international human rights treaty, convention on the rights of persons with disability. Secondly, the bill will establish new processes setting participant budgets. These new framework plans will include a stated total funding amount and will be based on needs-based assessments. Thirdly, the minister will be able to create new information-gathering powers to require the participant respond to requests for information. Fourthly, the minister will be able to create new powers for the NDIA to change a participant's plan type. The government has said these powers would be used to safeguard participants where others may seek to exploit or coerce the participant to use their package in a way that is not consistent with their best interests.

This bill contains significant reforms that aim to ensure the NDIS is sustainable for years and in fact decades to come, and the government has said this is the first in a series of legislative reforms arising from the 2023 NDIS review. Unfortunately, it is hard to say exactly what this bill will mean for people in my electorate, because so much of the detailed change will be deferred to the creation of the new NDIS rules. Earlier I outlined ways in which this bill is likely to change the NDIS, and it's unusual for me to say 'likely' after weeks of analysis and examination of legislation. But it speaks to a key anxiety around the way this legislation works, because we don't know what these new rules will look like and we're yet to see the government's formal response to the 2023 NDIS review. The government is asking participants to go on a reform journey without sharing the destination. The government is saying, 'Trust us.' The minister has committed to co-design throughout the development of the rules, but this is a community with a deep-seated trust deficit in its interaction with governments and institutions. 'Trust us' just isn't good enough in my opinion.

In recent weeks I've met with NDIS participants and providers and engaged with leading disability representative organisations to understand just what these bills will mean for the people of Indi. What I'm hearing is that people are so anxious about NDIS reforms. People want to know that reforms will enhance participant choice and control, not diminish it, and right now we simply don't know. While the effects of this bill may be unclear, some things are very clear. It is clear that the NDIS isn't working as intended in regional communities. It is clear that people are waiting for months for NDIS plan reviews even when they're living in abusive or unsafe environments. It is clear that participants have money they simply can't spend, because of the lack of regional NDIS providers. It is clear regional participants are forced to travel hours to access services, sometimes all the way to Melbourne from a faraway regional town.

What do I say to the people who come into my office feeling like they've got nowhere else to go? What do I say to the carers of NDIS participants who haven't been paid in months, due to NDIS plan review delays, but can't bear to see their clients fall through the cracks? What do I say to regional NDIS providers who are the only registered providers in their region but are verging on insolvency due to a funding model that sets them up to fail? These aren't profit-hungry businesses; these are community organisations employing local people and providing life-changing services, and I imagine there isn't a member in this place who's not familiar with stories just like these.

In the recent budget the government committed $130 million to co-design NDIS reforms with people with disability. If this government is serious about getting these reforms right, they need to slow down a bit and go on this reform journey with the community. Put simply, people with disabilities, their families and their representative organisations say this bill has been brought on too fast, with little consultation. This bill has been introduced before the government has published its response to the NDIS review. People are being asked to trust that the government will co-design future changes, but there are no guarantees. I've identified five areas in which this bill should be amended as a priority.

Firstly, the bill should be amended to guarantee co-design, and I would support amendments requiring that the legislative instruments be accompanied by a consultation statement setting out the views of disability representative organisations. Secondly, I support amending the new proposed definition of 'NDIS supports' to be broader than currently drafted. I've heard, loud and clear, community concerns that the proposed definition might limit how NDIS funds can be spent. I support the linking of the NDIS act and the Convention on the Rights of Persons with Disabilities. But here is the important part of that: the government can't cherrypick which parts of the convention it likes. The NDIS should support the implementation of the full range of rights of persons with disabilities, and flexibility must remain at the core of the NDIS. I've spoken with the minister on this issue and I do understand that there will be amendments circulated.

Thirdly, the bill should clarify that needs-based assessments and statements of supports are to be shown to participants before they are signed. These fundamental documents must be reviewable both internally and at the Administrative Review Tribunal. If the bill is passed unamended, disability representative organisations are concerned that participants will be shut out from decisions that affect them with inadequate rights of review. Fourthly, the bills need to clearly state that needs-based assessments are to be conducted by allied health professionals or social workers with disability expertise.

And, finally, sweeping new information-gathering and plan-management powers need to be stripped back. Unamended, there is nothing to stop the NDIA from kicking vulnerable people off the scheme simply for failing to respond to a letter in 30 days, and this simply can't be. The minister has assured me that this is not the intention of these changes, and that these powers would be used only in certain circumstances. I thank him for taking the time to meet with me about this, but if this is so, the bills should specify the criteria that would need to be met, and clarify that these powers would be used only where a participant is wilfully and fraudulently misusing the NDIS. Similarly, changing a participant's plan management type to one that is agency controlled is a significant decision, and the ministerial powers drafted are too broad. The community need clarity that these powers will be used only as a last resort and only in very specific circumstances. I do not support changes that would see participants punished or debts raised for mistakes or misunderstandings that will, understandably, occur from time to time.

I call on the government to work with the community in good faith to improve this bill so it achieves its purpose of securing a sustainable, thriving NDIS well into the future. Right now, this bill is causing anxiety out in the community, and until I see improvements on the bill I will be reserving my position. I finish with the words I spoke in 2020: the NDIS is something that all Australians should be proud of—not just a symbol but a functioning, real-life commitment to the type of nation we want to be. I still believe in that commitment to become the nation we want to be. That's why I support reforms to the NDIS that are designed with the community, not for them. If we get these NDIS reforms correct, if we sure that the NDIS review is implemented in genuine co-design with the community, then in another 10 years time we will look back and be proud not only of the nation we want to be but also of the nation that we are.

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