Getting the NDIS back on Track

04 June 2024

I rise to speak on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. I want to reflect on what it was like for Australians with a disability and their families before the NDIS. Between 2010 and 2013, when the scheme was first being designed and began, I had many conversations about this. There was a lot of luck in whether you got support. Some of it was based on your postcode. For people in the periurban and outer west that I represent, that brought huge uncertainty and, for too many, poverty and disadvantage.

The 2009 report Shut out painted a grim picture. As the Minister for the NDIS described it, it painted a picture then of people with disability isolated and alone, their lives a constant struggle for resources and support. What he and fellow Labor minister Jenny Macklin recognised was that Australia needed a whole system of disability support and the NDIS for people with the most complex support needs. In the decade since it started, I think we can all say that the NDIS has made a profound difference to the way Australians think about disability and has changed this country for the better. But, in spite of its promise, the NDIS does not yet fully deliver the peace of mind that people with a disability and their families deserve.

One of the most powerful conversations I had prior to the introduction of the NDIS was with an older couple who told me about their son, in his 40s, with complex disabilities. They were all ageing, and their biggest fear was not being around to care for their son. It worries me that today I still hear too many families express the same concern. It's not always for the same reasons, but it is because of the complexity and challenge in interacting with the NDIS—that it can feel like combat when needs or circumstances change or that the NDIS asks year after year for people to prove that their lifelong disability still exists, as if a permanent disability will have suddenly disappeared. That is why securing the future of the NDIS is so important.

Our lives can change in an instant, and every Australian deserves the peace of mind of knowing that, if they or someone they love has or acquires a significant and permanent disability, the NDIS will be there for them. Our promise was to restore trust in the NDIS, and, in the two years we've been in office, I know the Minister for the NDIS has worked through a myriad of issues that we inherited. Some we knew of before coming to government, and others we've identified and refused to ignore. I'd like to acknowledge the work that has been done to date, including the slashing of the 4,500 legacy appeal cases at the Administrative Appeals Tribunal that had people in limbo for months if not years; the fact that more people with disability are being discharged from hospital onto the NDIS than waiting in beds when they are medically fit to go home; improvements to the board so there are now more people with lived experience and the first Aboriginal and Torres Strait Islander board member; and the fact that we've tackled fraud, waste and overcharging because we want to see that every single dollar goes to better outcomes for participants.

The Fraud Fusion Taskforce has investigated more than 100 cases involving more than $1 billion of NDIS funding. We've upgraded rules to make it clear that equipment and services cannot be more expensive because they're being bought under an NDIS package, and a new taskforce working alongside the ACCC will help identify people who are price gouging. Of course this is not the majority of good, dedicated service providers who would never betray their NDIS participants or taxpayers with this bad behaviour. But we have to stop those who do. The independent review we undertook, with some of the most extensive consultation with Australians ever, made 26 recommendations to us, and this bill is just the start of a very long reform process. Any change will take years. The process of reform will take years. And I know that creates anxiety for people.

I recently sat down for a detailed discussion with a group of parents in Springwood who care for their children with support from the NDIS. The families have a range of care in place under their plans. Some are self-managed, others are with plan managers, some have adult kids who live with them and others are in supported independent care. Each has a unique mix of supports to create a rich individual life. They all had fears and frustrations, and I am grateful for their honesty and bravery in discussing what is working, what isn't working, their concerns about some of the elements in this legislation and what they were afraid might be changed.

Frustrations included having to fight for things like shoes. One family explained their son needed special shoes in order to walk, but shoes are deemed a regular life expense, so they had to demonstrate the need for the more expensive shoes, and a decision was made that they should be funded for one of those shoes. They told me about having to fight to keep funding for therapies and programs that have allowed physical or psychosocial improvements, because, while there is an improvement, it's only an improvement while the therapy or program is able to be accessed, and they fear that they might lose that funding. One family fears that a son who needs three people to move him might not be able to keep that support.

Although, of course, the review recognised and stated very clearly that sometimes participants can't share supports, it said they might need more support because they have higher individual needs or are in more complex circumstances. These are the fears that people have.

I know that, at the same time that participants and families want to see consistency, transparency and a fairer and more compassionate scheme, they are also worried about any loss of the complex care arrangements that they have fought really hard to put in place. I recognise that anytime we talk about changing the NDIS it's scary, but we have committed to engaging and consulting with people with disability and their families, their carers, representative organisations, service providers, unions and the broader community over the months and years that it will take to fulfil the potential of the NDIS. There is an enormous amount of work to do together to achieve it.

I want to thank the minister for acknowledging the nervousness and for his reassurance to people who, as he says, have battled hard to create an NDIS and to get their packages of support. His commitment is that we will work with you to make sure that people are getting the right support in the right way.

What we're speaking about here today is a bill which is best described as enabling architecture for the rules and future reforms to restore the original intent, integrity, consistency and transparency of the scheme that Labor created. One of the key elements is also the agreement by every state and territory that we work to ensure that the NDIS is not the only source of support for people with disability but that it is part of a larger ecosystem of supports. Certainly, in New South Wales over the last decade, I have seen state government funded supports in a whole range of things, from early childhood services and early intervention through to allied health services and psychosocial programs, closed down and withdrawn. If you weren't eligible for the NDIS, it meant you were left with nothing, which was never meant to be the situation. That will change only by working with the states in coming years.

I know that this bill has a journey to go through in this place and that there is live discussion, but, essentially, the getting the NDIS back on track bill is laying the foundation for implementing key review recommendations on planning and budget setting. It'll provide clarity on who can access the NDIS, it'll enable better early intervention pathways for people living with psychosocial disability and children younger than nine years old with developmental delay and disability, and it'll improve how NDIS participant budgets are set, making them more flexible and providing clear information on how they can be spent.

Rather than going through all the technical elements, let me focus on a couple of key points. 'Reasonable and necessary' remains the core basis on which support needs are met through the NDIS. There are no changes to 'reasonable and necessary' in this bill. The minister, in his second reading speech, also addressed some rumours head-on, and I think it's worth quoting his words:

… (1) psychosocial disability is still included in the NDIS—full stop; (2) autism is still recognised as a disability
—full stop …

For the first time, this legislation will link to the UN Convention on the Rights of Persons with Disabilities. Rather than reference a specific article of the convention, the definition requires the NDIS support to implement any of Australia's obligations under the convention.

Another change relates to the requirement to provide information for eligibility reassessment. We'll work with the disability community on the operating guidance on this matter. The minister has stressed that, while it's important for the CEO of the scheme to have the ability to request and receive information on participants, this will not result in people needing to re-prove their disability. But they or their nominee will need to communicate with the agency in a way that works best for the person on the scheme. Where there is a risk for a participant, including financial risk, with plan management arrangements, the agency will have responsibility to act.

This bill also includes amendments to provide greater flexibility for the NDIS Quality and Safeguards Commission in its compliance powers, which build on our comprehensive fraud reforms. These are not about the majority of providers who are good, trusted and ethical people and organisations. I'm privileged to have many of these in my own electorate of Macquarie. I see examples regularly of providers who go above and beyond their paid hours to advocate for or support people in their care with care and compassion. I thank them for that. Again I know that we need changes to make this system sustainable for you and that you are part of the NDIS being around not just for now but for the future.

But there are still those who are ripping off the scheme and using it to provide poor services at exorbitant rates or to not provide what they promised to at all. We will continue to up the ante for dodgy providers.

Finally, I know the registration element for all NDIS workers is unsettling for some families as much as it is for providers. Currently, only around nine per cent of providers are registered. We're waiting on the report of the NDIS Provider and Worker Registration Taskforce, led by lawyer and disability advocate Natalie Wade, to inform those decisions. But, for the immediate changes and those that will take longer to implement, the non-negotiable part for all of us is that these things have to be done in collaboration with people with disability. That doesn't mean just with the large advocates but also with those in my community who have invested so much in making the scheme work for them or are still trying to make it work for them or their loved one.

I'll continue to work closely with my community in airing their concerns and their worries as the reforms move forward in coming months and years. I know, like many MPs, that we don't always get to hear the good outcomes and we do tend to focus on the battles that we help families fight. But I am always grateful to hear the good stories, as I was at the weekend, when a father, who was meeting with me about something completely different, expressed his thanks for the scheme, which helps support his son. Like so many others, his son and, as a consequence, their family have experienced the transformational effects of the NDIS. We want that to continue for generations to come.