Carol Berry (Whitlam, Australian Labor Party) Share this | Hansard source

I need to start by outlining my sense of disbelief in relation to the sudden concern on the part of the coalition for the future of the NDIS. I have worked alongside people with disability for about 17 years, and I have to say that, for that entire time, I have not felt a deep sense of concern about the NDIS from the opposition—so I found all those words somewhat disingenuous, I have to say.

I rise today to speak in support of this important bill, the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. As I just mentioned, I worked alongside people with disability and their families for many years in various roles before I became a member of parliament. I am therefore particularly passionate about protecting and promoting the rights and interests of people with disability. The job I had immediately before I became a parliamentarian was CEO of the Disability Trust, one of the largest providers of disability services in Australia, where I worked hard to ensure we provided quality services in order to support people to fulfil their aspirations and live their best lives.

Early in my career, I worked as a human rights lawyer for the Public Interest Advocacy Centre, where I supported people with disability to have their rights upheld. I later became the CEO of the New South Wales Council for Intellectual Disability, where I advocated for people with intellectual disability and their families to get access to better supports and services. This was back in the mid-2000s, before the NDIS was introduced. At that stage, the idea of individualised funding was largely an untested concept. I saw firsthand how difficult it was to get any attention on the issues affecting people with disability and their families. Funding was inadequate and people did not receive the services they needed. There were waiting lists for critical services like accommodation supports, and people were placed in living arrangements by a panel of decision-makers rather than being able to make their own choices.

After working at the New South Wales Council for Intellectual Disability, I worked for the Community and Disability Services Commissioner at the New South Wales Ombudsman, where we were responsible for the oversight of the closure of large residential centres in New South Wales. These were the centres where people with disability had been housed in previous generations. There was a time in the not-too-distant past where, if you were born with a disability, you would likely be institutionalised. Part of my role at the New South Wales Ombudsman was to provide oversight in relation to the closure of these large residential centres like Stockton, near Newcastle, which, at one time, at its peak, housed over 1,200 people. I met people with disability who had been raised in these institutions. Their emotional suffering was immense, and some had also been physically and psychologically abused.

It was in this context of profound suffering, exclusion and trauma that the movement around the rights of people with disability emerged and flourished. It was a great privilege for me to meet and work alongside incredible self-advocates like Kim Walker and Robert Strike—people with disability who grew up in institutions and then fought relentlessly for them to be closed. Meeting these incredibly strong and determined advocates quite simply changed the course of my life. Kim Walker's book, Forgotten and Found, is a powerful read and is available on the website of the New South Wales Council for Intellectual Disability. The foreword to this book is written by Jim Simpson, a formidable advocate for people with intellectual disability, who I had the great privilege to work alongside at the New South Wales Council for Intellectual Disability. Jim states:

Kim wrote this book because she wanted it be read by politicians, senior bureaucrats and parents of people with disability. She wanted them to hear her story and heartache and make sure that what happened to her never happened to other people with disability.

…   …   …

Kim led an extraordinary and harrowing life. Countless of us have benefited from her friendship. Society is that bit better for her example and relentless advocacy.

As Kim herself said:

When I was less than three years old, I was sent to live in an institution for children with an intellectual disability. This was a time, in the 1950s, when lots of children with a disability were sent away from their families … I grew up without knowing my parents or my brother and sister.

I was forgotten.

I am writing this story about my life now because I want everyone to know what life has been like for people like me. I want people to remember what happened to us, how we were shut away and forgotten, and I want people never to forget this … And I want to make sure that what happened to me will never happen to anyone again.

Back then, people with disability were shut away and forgotten.

Out of the movement to change all this came the green shoots of the NDIS, hard fought for and won by people with disability and their supporters. The motto of the movement for the rights of people with disability is 'nothing about us without us'. It's also in this context that the NDIS and all that it's come to represent has been fiercely defended, and for good reason. I understand people's profound concern that the NDIS will be watered down, cut or lost altogether. I have watched as the NDIS has come under intense scrutiny, and for good reason, as it has design flaws which need urgent correction. But this is a scheme born of a movement, and the movement wants it protected. It should be. It's important also to note that Labor created the NDIS, and Labor will defend it. As an elected member of parliament, I will continue to focus on how we can improve the lives of people with disability, and that includes through my membership of the Joint Standing Committee on the NDIS.

As I mentioned, the NDIS is a great Labor reform, but it was driven by people with disability themselves. It also reflects the fair mindedness and decency of the Australian people. It has changed many lives and our country for the better, and it's a world-leading scheme. However, the NDIS needs to return to its intended purpose, and, unless we take action to make it sustainable, I fear that it will lose its social licence and will not be here in the future for those Australians who need it the most. The NDIS was originally intended to support around 410,000 people with a disability. Today there are 760,000 people on the scheme. We can't afford for the NDIS to continue to grow at its present rate, but, more importantly, we can't afford for the NDIS to fail.

The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 addresses two key issues. The first is sustainability. The NDIS is growing at a rate that was unforeseen when it was established in 2013 and, if left unchecked, will put the scheme's future at risk. The second major issue addressed by the bill is fraud. Unbelievably, given who it's designed for, the NDIS has become the target for fraudulent activity, including through organised crime, and this is having a devastating impact on too many participants and their families and the integrity of the NDIS itself.

Importantly, the reforms contained in this bill draw on the Independent Review into the National Disability Insurance Scheme conducted in 2023; the NDIS Provider and Worker Registration Taskforce completed in 2024; the Australian National Audit Office's 2019 report on the scheme's fraud control program; and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, which ran from 2019 to 2023. It's important to recognise the amount of work that was done by people with disability and their supporters through all of those processes.

Schedule 1 of this bill sets out the key measures that will help put the NDIS back on a sustainable footing both now and into the future. The Independent Review of the NDIS, known as the NDIS review, found that the current approach to accessing the scheme is inconsistent and inequitable and not always targeted to those people with disability who require the most support. This has contributed to participant numbers becoming far greater than was envisaged when the scheme was created to support people with permanent and significant disability. This bill clarifies the meaning of the term 'functional capacity' and provides for the assessment of thresholds of functional capacity, an amendment that is consistent with recommendation 3 of the NDIS review. Further work is needed to identify the appropriate threshold of functional capacity, and it's important to note that the government will establish a technical advisory group to provide expert advice on an appropriate threshold and assessments for substantially reduced functional capacity.

Another amendment in schedule 1 enables the minister to make determinations to reset funding for supports like social, community and civic participation and capacity-building. These supports were intended to act as a framework that opens society up for people with disability and allows genuine community participation. However, while many support workers provide valuable supports—I've seen that firsthand—there is evidence that some providers are not delivering genuine and quality community participation. Not only is this aspect of the scheme not working as it was intended but it is becoming increasingly expensive. Spending on these support streams has tripled from $4 billion per year to $12 billion per year over the past five years, which means it now costs about the same as what we would spend in net terms on the entire Pharmaceutical Benefits Scheme, and it could reach $20 billion by the end of the decade if nothing is done. Importantly, the government will establish a $200 million fund, the Inclusive Communities Fund, to rebuild capability among community organisations so that NDIS participants have new options to genuinely participate in their local community.

Schedule 2 of the bill will strengthen the ability of the National Disability Insurance Agency to effectively manage the integrity of the NDIS. The Albanese government has made significant investments to tackle fraud and noncompliance under the NDIS. Labor established the Fraud Fusion Taskforce shortly after coming into government, and it identified eight recurring design failures in longstanding government programs that make them susceptible to fraud. It found the NDIS has all eight. The Fraud Fusion Taskforce has also identified seven fundamental building blocks for high-integrity programs, and it noted that the NDIS has none of these. These structural flaws mean that measures we've introduced to control spending are simply not working as we intended. It's important to note as well that governments of both persuasions have been responsible for these issues.

A key area of focus is provider registration. Only one in 16 providers is currently registered, and this needs to change. Not every provider needs to be fully registered, but the bill will expand categories of mandatory registration to include higher risk activities, personal care, daily living supports and supports provided in closed settings. This builds on existing mandatory registration requirements and also on our decision to introduce mandatory registration for supported independent living as well as platform providers from 1 July 2026, and I'm strongly in support of these reforms. Registration requires providers to meet defined quality and safeguarding standards, undergo independent audits and suitability assessments, comply with worker screening and reporting obligations, and maintain ongoing adherence to governance and safety requirements.

This bill also extends the NDIA's monitoring and investigative powers so that it can investigate serious fraud and noncompliance in relation to claims and payments in the scheme. It also inserts a range of new civil penalty provisions to deter providers and individuals from engaging in unlawful non-compliant conduct by imposing significant financial penalties. The bill will require providers, nominees and participants to retain records relating to the provision of supports and/or claiming of NDIS amounts for specified periods of time, and a civil penalty will apply to providers who fail to comply with this requirement. The NDIS review identified a range of issues with the agency's approach, and this change will establish a clearer and more transparent mechanism to set and enforce prices under the scheme. We're making it possible for the minister to be the core decision-maker in relation to pricing, and I'm strongly supportive of that change as well.

I am proud that Labor built the NDIS, and I'm also proud that we are taking responsibility for securing its future. I'm deeply committed to this work, and I will continue to be a passionate advocate for people with disability in this place. This bill is needed to restore the NDIS to its original intent of supporting people with permanent and significant disability, to stabilise the growth of the scheme and make the NDIS available and secure for those who need it most for generations to come. That is why I commend this bill to the House.

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