National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021

House of Representatives
Wednesday 25 August 2021

I rise to speak on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021. Today we debate and discuss vital support for disabled Australians. I thank the member for Macarthur for his very wise words. I know of his deep compassion for and also his knowledge of some of these issues that we're facing. I want to start today by acknowledging the sacrifice of so many people who are living with, dealing with or supporting those with disabilities in this country. While we are debating this important piece of legislation today we'll also be looking at and supporting our Aussie Paralympic heroes who are representing our nation in Tokyo.

At the end of question time today, the Prime Minister mentioned the successes of our Paralympians so far, and I know we're going to have plenty more of those to come. Nowhere are the values of courage and determination on better display than at the Paralympics—there is nowhere a better example of the extraordinary things that people with disabilities are capable of, if they receive the opportunities and support they need to thrive. With your indulgence, Deputy Speaker Vasta, I want to acknowledge one Australian who I'll be cheering on of all the Paralympians: a local called Taymon Kenton-Smith, a Paralympic archer and a terrific guy.

After being given a bow and arrow set in childhood, Taymon began shooting back in 2001 when he was only six years of age. At 14 he made a promise to his Nan to make it to the Paralympic Games. That year he received his first sponsorship, and in 2016 Taymon began to focus solely on his dream: being selected for the 2020 Paralympic Games in Tokyo. He did it. I want to give my best wishes to Taymon and to all of the Aussie Paralympic athletes who are in Tokyo, doing us proud, as I give this speech in the parliament. The incredible achievements and resilience of these athletes and all our disabled community is a testament to the importance of ensuring that we are fulfilling our responsibility to support and nurture Australians living with disabilities. We should all keep these Paralympians in mind as we debate this bill. They have achieved and will achieve incredible feats of athleticism, and they've done this while facing barriers that many of us could not even imagine.

Disabled Australians deserve our support, and they deserve the dignity of quality care. That's why I am speaking on the bill tonight and that's why I am in strong favour of the second reading amendment moved by the member for Ballarat, which is that the House today calls on the government to:

(1) take responsibility for all 'deaths by neglect' within the National Disability Insurance Scheme, which is a Federal Government program; and

(2) commit to genuine consultation with people with disability, disability rights organisations and disability representatives on all major changes to the NDIS Act".

I don't think that's too much to ask for, and I think it's the least that this parliament should be doing.

Sadly, Ann-Marie Smith did not receive this support or care. Many speakers have indicated the tragic and harrowing circumstances of Ms Smith, and I'm sad to have to report to the House her chronic neglect, which I can only describe as appalling and ultimately led to her death. On 6 April, Ms Smith died of neglect after a series of failures in the NDIS system, which was built to protect her. Ann-Marie had cerebral palsy, and she lived alone with the support of the NDIS system which entitled her to six hours of support each day. We still don't know all the details about her tragic death, but we know she'd been confined to a single cane chair for more than 12 months. We know that on 5 April her carer found her unresponsive and called an ambulance. She had to undergo surgery to remove the pressure sores—the rotting flesh—from her body. She was placed in palliative care, where she passed away the very next day.

Her lack of care killed her. She died of severe septic shock, multiorgan failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy. The police referred to her death as occurring in 'disgusting and degrading circumstances'. It was only when she was admitted to hospital that her situation was brought to light and the attending doctors made a complaint to the health authorities.

This is difficult to talk about, but it must be said. I know the shadow minister, Bill Shorten, has been fighting for justice for people like Ms Smith because their lives deserve recognition, and those responsible deserve the shame. But they need more than that. The company that was responsible for Ann-Marie's case, who so clearly failed her, was given a mere $12,600 fine by the NDIS watchdog—a $12½ thousand fine for contributing to the loss of someone's life.

An inquiry was launched by the South Australian government, but sadly this was not carried through by the federal government even after an NDIS participant died by neglect in Sydney—another tragic case. Faced with extreme pressure, the member for Fadden suggested that the NDIS Quality and Safeguards Commission should look into Ann-Marie's case. This would mean, in fact, that the commission would be investigating themselves, as their own action and neglect were contributors to Ann-Marie's situation. While this conflict should have been obvious, it was not until the opposition, through our shadow minister, Bill Shorten, publicly called it out and demanded an independent investigation that the watchdog appointed an independent judge to conduct a review. While this fell short of the national inquiry that is so clearly required here, at least it is closer. But the sense of urgency, sadly, just wasn't there for the government. As the member for Macarthur said, it was too little, too late—a hallmark of this government.

Finding out exactly what went wrong in Ann-Marie's case was clearly the best way to stop it happening again and the best way that we could save lives. Following a political and public scandal and a police investigation, the provider was finally deregistered, but what is evidenced here is another example of a government being forced to act by public pressure. I would like to think that best practice is in place for when there is a tragic loss of life, but this example demonstrates the clear fact that it is only when the actual pressure is put on—perhaps when there are bad headlines or when the public start contacting government members—that we see action. That's not good enough. It should be done because it is the right thing to be done. It should be done because it's the government's job to do it, not because it's become politically too hard not to.

The Robertson review was handed down with 10 recommendations, five of which the government now seek to implement. The government have had, as we have heard, over 51 weeks to deal with the recommendations of this review and to ensure that any legislation they introduced as a result went through an all-important consultation process, hence the second part of Labor's second reading amendment. The government didn't do this. They have instead rushed these measures to the chamber with zero formal consultation with disability stakeholders and the sector. Over the course of those 51 weeks, the government went through two NDIS ministers—two ministers and zero consultation. The Australian disability community deserve a say on legislation that will and should govern many aspects of their lives. Not to formally consult with them is an insult, and I really think the minister owes the sector an apology as to why there hasn't been adequate consultation. I don't say that with any glee or any joy. I just think that is a matter of best practice. Ministers, who are privileged to run departments, to stand in this place and to be responsible for good public health and social policy outcomes, should, at a minimum, be willing to listen and willing to consult, and that has not happened here. We can see the same non-consultative approach in this government's attempts to force through cuts and mandatory independent assessments explicitly against the wishes of people living with a disability.

We've had eight years of the current government, and it's clear that this watchdog is not doing the job it should be doing. Disabled Australians deserve dignity, respect and quality of care. It is this watchdog's job to ensure that they get it, and above all it is this government's job to ensure that they get it. In this instance, and possibly many others that we will never know about, they've failed.

The vast majority of carers and providers do the right thing, and I want to acknowledge the outstanding work of all of the people in the sector, the unsung heroes who have worked so hard during the pandemic, in stressful situations, dealing with health situations and dealing with clients that are deeply frustrated and concerned. I know my own office has been dealing with family and loved ones, particularly at the height of the pandemic and the start of the botched rollout, when we didn't have access to vaccines for the most vulnerable in the community, despite the government's promises. Despite them getting up in this chamber and talking about the plan, the plan, the plan, the plan, there wasn't a plan in place to protect vulnerable Australians. There has never been a plan under which the Prime Minister has delivered what he said he would. We were told 'by Easter'—remember that, the commitment to 'by Easter'?—and people working in the sector are still not protected.

I want to acknowledge all of their work and salute them for their efforts—for the extraordinary work that they do, going beyond the call of duty. I've sat down with carers, and they've been in tears sharing with me their stories about what they've had to go through during the pandemic. We know the job of a carer, particularly in the NDIS space, is very difficult, and they deserve much, much more from this government. Ann-Marie's death calls into sharp relief the need for urgent and proper reform, based on meaningful consultation. Instead, we have a bill before us that was not formally taken to disability community consultation, and it implements just five of Mr Robertson's review team's recommendations.

This bill is welcome, because something is better than nothing, but we should be aiming far higher for our disabled community and for those who work in, and support so many in, the disability sector. I know in my own community the amazing organisations that offer so much support, whether that be through respite or through daily care—the wonderful NDIS providers. It's not an easy situation to navigate. The system has had its glitches over the years. The government has bungled a number of issues, whether it be support for younger people with disabilities or being able to navigate the complex system and the hurdles that this government has put into place. Many people have triumphed and got through, and their quality of life has greatly improved. We know the NDIS was a wonderful legacy of the Labor government, implemented by then Prime Minister Julia Gillard. It has continued to operate, but perhaps not with the level of support that it once was desired to have. I'm confident that this legislation, passed tonight, will improve the situation somewhat, but there is still a long way to go.

I urge the Morrison government to afford Australians living with disabilities the respect of a proper consultation process. So, if there is one takeaway for Minister Reynolds's office—I hope they and the bureaucrats are watching this debate this evening—it is that they learn the lessons of the past and not make those mistakes again. And the best way they can do that is by meaningful consultation with people who are working in, living in and dealing with the disability sector in this country, because those communities deserve nothing less than a government willing to listen and a government willing to act.