NDIS - Australians deserve better

August 25, 2021

I speak today on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021, and I do so from Yuggera and Turrbal lands here in Brisbane. This bill implements recommendations 1, 6, 7, 8 and 9 of the Independent review of the adequacy of the regulation of the supports and services provided to Ms Ann-Marie Smith, an NDIS participant, who died on 6 April 2020. Her death was a tragedy. The review was conducted by the Hon. Alan Robertson SC, who made a number of recommendations for legislative change to improve the protections for participants who are at risk of harm. The recommendations which this bill implements include facilitating better exchange of information between the agency and the commission, the disclosure of information to relevant state and territory bodies, and clarification around the scope of reportable incidents.

I wouldn't be sitting here debating this bill today if Labor's shadow minister for the NDIS, the member for Maribyrnong, had not pressured the Morrison government to establish the Robertson review after the horrible death of Ms Ann-Marie Smith. And I should point out that the member for Maribyrnong has been a champion of the NDIS ever since Jenny Macklin was the lead minister and it was just a policy idea in the Labor locker. So I do thank him personally for the great work he's done in this area.

This report, commissioned by the coalition government, fell short of what the Australian Labor Party actually called for, which was a broad, independent inquiry into NDIS safeguarding, locking in those checks and balances. The terms of reference for the Robertson review were targeted only to review the adequacy of the regulation of the supports and services provided to Ms Ann-Marie Smith. Nonetheless, the review made a number of recommendations for legislative change to improve the protections for other participants at risk of harm. I'm grateful to former Federal Court Justice Alan Robertson for the recommendations he has made and support their implementation through this bill that is currently before the chamber. In terms of what that review found specifically in relation to the death of Ms Smith, it did not find any wrongdoing by the commission, whose remit is to protect NDIS participants.

Ann-Marie Smith was a 54-year-old NDIS participant—which, in my opinion, is so young. She died on 6 April 2020 from severe septic shock, multiple organ failure and a multitude of other complications after being confined to a cane chair 24 hours a day for more than a year. How could this happen in a country like Australia? The provider was issued a fine of $12,600 for failing to notify the commission of Ann-Marie's death within 24 hours. It appears that this is the only fine the commission has issued against a provider since it was set up in 2018—three years, one fine.

Four months after Ann-Marie's death a banning order was issued to the provider, Integrity Care. Listen to those two words: Integrity Care. That's surely the most ironic name since I saw the credits for The Never Ending Story! I will acknowledge that Lionel Hutz actually owns that joke. Since Ann-Marie's tragic death the commission has still only issued a handful of infringements. It's clearly not good enough that this can happen in Australia. We're not talking about a one-off event. This was horrific systemic abuse that occurred over 12 months and more.

The NDIS commission regulates providers, but the NDIA actually administers the scheme to participants. If you remember, it's all about giving people control over their lives. After the inaugural NDIS Quality and Safeguards Commissioner, Graeme Head, was appointed, he said in a speech:

We're able to take a range of actions including deregistration, banning orders or seeking the application of civil penalties so we really do have a comprehensive tool kit. We have comprehensive regulatory powers and functions, and real regulatory teeth.

Where were those regulatory teeth when Ann-Marie Smith was being neglected so severely by her carer? Why wasn't the commission overseeing the care she was receiving through NDIS funding? One of the problems highlighted by the review was the lack of information sharing and the buck-passing between the NDIA and the NDIS. I hope that the recommendations made by the review implemented by this bill will go some way to making providers more accountable and, more importantly, ensuring that this can never happen again.

I'm very concerned that there's been no meaningful consultation with disability stakeholders prior to the introduction of this bill. Nothing about us without us. That's stakeholder 101—a lesson that this government needs to learn. Sadly, I'm aware that refusing to consult has become a feature of this coalition government. We've seen it time and time again. Bills are introduced but no prior consultation has occurred. On many occasions we've seen non-political stakeholders saying, 'If you'd asked us we would have told you that this won't work or we would've told you how to make it better to improve it.'

The Robertson review did not have statutory powers, meetings were held over two days, and submissions were not made public. There's been no wider sector or parliamentary engagement communicated by the Morrison-Joyce government in the development of this bill. It's so important that we include lived experiences in the legislative process. Only lived experiences, especially in the disability area, can truly reflect whether these reforms will be effective in practice or whether more or other recommendations from the review should be legislated.

There is some concern from disability rights organisations and advocates about the information-sharing provisions in this bill, in particular how 'vulnerable' will be defined for the purposes of identifying and protecting certain participants. Vulnerability is not actually defined in the act. There's no doubt that Ann-Marie Smith was vulnerable. Sadly Ann-Marie is not the only vulnerable person who has died because of the coalition's mismanagement, and I would suggest hardwired underspend, when it comes to the NDIS. Tim Rubenach, from Tasmania, died while waiting for a wheelchair from the NDIS. There's David Harris from New South Wales. Mr Harris's funding was cut off because he missed an annual review meeting. Cleaners and other NDIS-funded support workers stopped visiting. David was dead in his Parramatta unit for two months before, tragically, his body was discovered by the police. There's also Liam Danher from Queensland. Mr Danher was 23 years old, with a severe intellectual impairment. He lived with autism and epilepsy. His parents had applied for funding for a seizure mattress that would sound an alarm in the event of an epileptic fit. The application was met with knockbacks and requests for more documentation to justify the $2,500 to be spent on the life-saving mat. On 5 February this year Liam's parents awoke to find Liam dead in his room, having died of a seizure in his sleep. These deaths, and there are many more, are all tragic, and many of them, perhaps all of them, could have been prevented.

The National Disability Insurance Scheme is a proud Labor legacy—and I particularly thank former Prime Minister Julia Gillard for what is surely one of her greatest legacies—but, under the coalition, it has been gutted and mismanaged. The coalition has ripped 4.4 billion out of the NDIS. Institutionalised underspending is what we've seen, budget after budget. More than 1,200 Australians have died while waiting to be funded by the NDIS. The coalition even shamelessly tried to ram through an unpopular independent assessment scheme, before it eventually decided to scrap it altogether after community pressure.

The Morrison government's neglect of the disability sector is impacting people all over the country, including right here in my electorate of Morton. I was contacted a few months ago by a constituent whose husband lives with a disability in a residential facility. She told how he had not been able to access the COVID vaccine. She explained that her husband, like many people with a disability, has a suppressed and compromised immune system, which makes going out into the community unsafe. Sadly, the staff at her husband's residential facility also had not been vaccinated. This is in Australia in 2021. The residents of this facility were told to find their own vaccinations. This would have been impossible without putting these vulnerable people at risk. The residents and staff at this facility were all in priority 1a of the vaccine rollout, or stroll-out, as it's been called.

Just over a quarter of Australians in the National Disability Insurance Scheme are fully vaccinated, way behind the national average. Deputy Speaker, don't look at the coalition announcements and press releases. Look at their actual achievements. Just over half of NDIS participants in group homes have been fully vaccinated. Shame! This group was in phase 1a of the rollout. They were supposed to have priority access and to be fully vaccinated months ago. This week, Sam Connor, the president of People with Disability Australia, said it was 'unconscionable that we have not protected the people most at risk.' This is neglect by the Morrison-Joyce government on a grand scale.

The coalition have completely bungled the vaccine rollout. The Prime Minister had two jobs to focus on: a speedy, effective rollout of vaccine, and quarantine. And we know that he has failed at both. He didn't order enough vaccines. He said we were at the front of the queue, yet he couldn't even find the front of the queue—or the end of the queue, in fact. He said it's not a race, but it is a race, a life-saving and important race. It always was a race. When he's called out on his failures, as happens in question time, he says 'It's not my job', or 'It's a matter for the states'—basically, 'Blame anyone but me.' Because of the Prime Minister's failures, the health of Australians living with a disability—some of the most vulnerable people in our society—has been put at risk.

I welcome the bill's aim to improve the support and protections to NDIS participants who may be at risk of harm, and I acknowledge the government's implementation of the recommendations of the Robertson review in this bill, even if it has taken 12 months since the report was handed down. But I also wish to note the lack of consultation with people with disability on how these changes will impact on their lives. Consultation is a continuing failure of the Morrison government. People with disability deserve better. In fact, all Australians deserve better.