Wednesday, 7 October 2020
National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020; Second Reading
I rise to support the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020. I move:
That all words after "That" be omitted with a view to substituting the following words:
"whilst not declining to give the bill a second reading, the House 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)immediately respond to the report to the NDIS Quality and Safeguards Commissioner by Alan Robertson SC into the adequacy of the regulation of the supports and services provided to Ms Ann-Marie Smith, who died on 6 April 2020".
The amendment is moved on behalf of the member for Maribyrnong, who is unable to attend this sitting of parliament. In moving this amendment, I stand with the member for Maribyrnong in stating that it is impossible to overstate the seriousness of this issue and that the government must put in place the safeguards needed to protect Australians who are accessing the NDIS, and I stress how serious the situation is.
This bill has its origin in the tragic death of Adelaide woman Ann-Marie Smith. It is a partial response to the shortcomings in the system that led to Ann-Marie's death. And when I say 'partial response', the emphasis should be on 'partial'. There is nothing inappropriate about the changes proposed, but they are largely peripheral to the reform and the bolder action that needs to be taken to prevent further, similar lonely deaths of Australians with disabilities. To properly illustrate just how peripheral these changes are, I need to discuss the sad details of Ann-Marie's passing.
Ann-Marie Smith had cerebral palsy. She lived alone and she relied on a carer for all her needs. She was an NDIS participant and her package entitled her to six hours of support a day. She was 54 years old when she died on 6 April. Some details of her death and last days and weeks remain unclear. But this is what we do know. She had been confined to a cane chair for 24 hours a day for more than a year. The chair had become her toilet. It is unimaginable.
On 5 April, Ann-Marie's carer attended her home and, finding her unresponsive, called for an ambulance. At the Royal Adelaide Hospital, she had major surgery to remove the rotting flesh and severe pressure sores she had on her body. She went into palliative care and died the next day. The pain must have been unimaginable. Ann-Marie died of severe septic shock, multi-organ failure, severe pressure sores, malnutrition and issues connected to her cerebral palsy. The police referred to her death as having occurred in disgusting and degrading circumstances. Only upon admission to hospital and a complaint made by the attending doctors to the health authorities were any alarms triggered about the NDIS participant's care or lack of it. Unfortunately for Ann-Marie, it was too late.
There has been a characteristic lack of transparency about the authorities' actions in this case from the NDIS minister, Stuart Robert. We should safely assume that, on the day of Ann-Marie's death, when the Health and Community Services Complaints Commissioner was notified, Mr Robert was also notified. Despite this, the case was not made public until the police probe triggered media reports more than a month later, in mid-May. It took a week after that for the NDIS watchdog, the NDIS Quality and Safeguards Commission, to sanction the company, the NDIS provider, that was being paid for Ann-Marie's care. The penalty—a measly $12,600 fine. It's insulting, it's disrespectful and it's pathetic.
The South Australian government launched a state inquiry, but the minister refused to launch a national equivalent, despite another death by neglect in a house in New South Wales of another NDIS participant. I tend to think the quality and safeguards commission, the so-called watchdog, would have been happy to leave it at that. But, under pressure to do something, Minister Robert said the NDIS Quality and Safeguards Commission would look into Ann-Marie's case. This amounted to Stuart Robert suggesting the watchdog look into her case, where the watchdog's own neglect and inaction played a starring role. If the watchdog had done its job, this provider and carer would not have been able to neglect Ann-Marie to her death. She would have experienced a living hell—an absolute living hell.
On 25 May, Labor and the member for Maribyrnong publicly pointed out the unworkable conflict of Mr Robert's solution and demanded an independent inquiry. The next day the watchdog announced that an independent former judge would be reviewing what happened, not the watchdog. This was some progress. It is not the national inquiry we need, though, and it is no comfort to the loved ones of another NDIS participant, David Harris, who was found in his Parramatta apartment after he passed away after being unilaterally kicked out of the NDIS. Mr Harris died in his home after his NDIS supports were cut off because he missed a review meeting, and he was not found for months after his death.
In the immediate aftermath of Ann-Marie's death, the provider was happy for all the blame to be hung on the carer who worked for them. Initially Stuart Robert's disability watchdog, the NDIS Quality and Safeguards Commission, was also happy for the provider to be given a small fine and to leave it at that. Sadly, the real disability watchdog work in this case has been left to the South Australian Police, and they only got called in after the tragedy had already occurred. Following the public scandal, the outcry, and the strong work of the police, the disability watchdog had a longer think about it, and eventually deregistered the provider. And now we have this bill.
The bill allows for the banning of a carer from further NDIS work in a situation where the carer is no longer employed by the NDIS provider. It is a worthy change, but it would not have prevented Ann-Marie's carer from neglecting her because, at that point, she was an employee. I note that the carer currently has bigger things to worry about. She's in home detention, awaiting trial, charged with manslaughter. That is because, as noted in this case, the conscientious authority has been the South Australian Police.
It's taken six months for this government to bring forward these minor legislative changes to a second reading. In that time, the South Australian Police have investigated, got a brief of evidence together and charged the carer. How sad that the ultimate authority looking out for people with disability is not the disability watchdog; it is the police—it takes a crime for anyone to take notice.
The other proposed change in this bill would allow the pre-emptive banning of a person from disability work due to their actions in an adjacent, non-disability area. This would have caught out Ann-Marie's carer, because she had previously been banned from Domiciliary Care, South Australia, due to accusations of theft. This change would, of course, have prevented Ann-Marie's specific carer from neglecting her, but it would not prevent another carer from doing the same and being tolerated or encouraged to do so by a substantive provider not held accountable by the watchdog.
A cynic might suggest it's the NDIS minister's attempt to appear to be a man of action and to appear to be doing something so that Ms Smith and others may not have seemed to have died in vain. Even now, this bill does not even amount to shutting the gate after the horse has bolted. These changes alone will not prevent future abuse, neglect, pain and possible death. These changes just make things a little better. These changes are painting the gate after the horse has bolted. These legislative changes presuppose that the determinative cause of Ms Smith's death was that a good watchdog had its hands tied, and these changes will untie them.
The sad truth, though, is that we have a disability watchdog that is not performing its role and a seven-year-old government turning a blind eye. The second the circumstances of Ms Smith's demise came to light, the NDIS minister, Stuart Robert, should have come down on the NDIS Quality and Safeguards Commission like a thunderbolt. In short, the minister should be making his commission do its job. Instead, through exercises like this one, the minister is doing the opposite of that. He is actually providing cover to the watchdog, which has been found sleeping.
Why won't the minister demand the NDIS Quality and Safeguards Commission get out there to keep providers and workers accountable? Who knows. Perhaps he thinks it will be expensive. Perhaps he plans to turn the whole thing into an app, as the digital innovator that he thinks he is. Or perhaps he doesn't care about the disability portfolio.
This brings me to another sad truth: when it comes to portfolios involving vulnerable Australians such as aged care and disability, the Australian people get the dregs of Morrison's ministry. Why do we have to wait for tragedies for these portfolios to be treated seriously and for them to be elevated to people who can do the job?
As a reaction to Ms Smith's death, this bill is, frankly, underwhelmingly disrespectful. At the risk of mixing animal metaphors, the elephant in the room here is this government's watchdog and its failure to perform its role. All institutions can tend towards entropy. The fault lies at the minister's feet, firstly, for allowing this to happen and, secondly, after the alarm had been sounded by these deaths, in failing to demand anything be done differently.
This watchdog has powers and resources to do its job well. No doubt there are many hardworking, well-intentioned people there. By their own account, the watchdog, the NDIS commission, already has broad powers. A media release of the commission dated 21 May states:
The NDIS Commission has broad powers to take compliance and enforcement action when NDIS providers are found not to have met their obligations under the NDIS Act 2013.
Yet this watchdog has only ever issued one fine to a provider—the one given to Integrity Care over Ann-Marie's death—despite more than 8,000 complaints in the last two years.
Providers routinely fail to report disability deaths to the watchdog in a timely manner, and there is seemingly little consequence. This government funds the executive of the watchdog to jet around, but does not ask them to do unannounced spot checks on the industry to keep everyone safe. Their own independent review of Ms Smith's death, conducted by Alan Robertson SC, made a series of sensible recommendations, including proactive spot checks, community visitation and that more than one carer be responsible for a vulnerable person with a disability. This was the review initiated under the watch of Stuart Roberts, yet there has been nothing but deathly silence from the minister as to whether the government accepts them.
In closing, I say that death by neglect of NDIS participants in their homes reveals a real need for the government to provide an NDIS watchdog that is willing to use its teeth. An overwhelming majority of carers and providers do the right thing. They do a great job in trying circumstances. All we ask of the watchdog is that it keep an eye on the sector and weed out the bad ones who do not do the right thing, and that it to do that before they do a great amount of harm.
Labor will support this legislation, though it would likely have made little difference in the deaths of Ms Smith and Mr Harris. A common link in all these cases is a lack of an active watchdog supervising the NDIS and performing active quality control, including unannounced spot checks on providers and the carers working for them. Under the hapless reign of Minister Stuart Robert and after seven years of Liberal mismanagement of the NDIS, the commission is acting more like a purse puppy than a watchdog. The commission has still not launched an inquiry into the death of Mr Harris. It is an outrage. Putting the watchdog to work is the real action required by this government to prevent further disability tragedies. As my second reading amendment, I move:
That all words after "That" be omitted with a view to substituting the following words:
"whilst not declining to give the bill a second reading, the House 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)immediately respond to the report to the NDIS Quality and Safeguards Commissioner by Alan Robertson SC into the adequacy of the regulation of the supports and services provided to Ms Ann-Marie Smith, who died on 6 April 2020".
The original question was that this bill be now read a second time. To this the honourable member for Barton has moved as an amendment that all words after 'That' be omitted with a view to substituting other words. The question now is that the words proposed to be omitted stand part of the question.
Nothing is more important to our nation than supporting our community's most vulnerable and helping them achieve the highest standard of living possible. This bill, the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020, strengthens the integrity of the NDIS system by providing additional powers to the commissioner to ban providers who, due to misconduct, are unsuitable for this work.
We require the highest standards when it comes to organisations and people involved in delivering the NDIS. Why others in this House do not support us on that is really a question for them. There is no room for shortcuts. There is no place for second best. It is important that the system and the people tasked with looking after the interests of vulnerable people are given the resources to do their job. To us as a government the safety and wellbeing of Australians is paramount. Expanding the powers of the commissioner to ban those who are unsuitable could not be more important. How are we to empower Australians if we cannot guarantee their wellbeing?
As the legislation currently stands, the commissioner does not have—let me repeat that: does not have—the authority to ban non-NDIS providers from entering the scheme. This means, for example, that an organisation guilty of misconduct can close its NDIS arm of the business to avoid sanctions. Gaming the system is simply not on, especially when it comes to the disabled, the elderly or children. As a government and, I would say, as a nation we have a special responsibility to the less fortunate—a duty of care and a responsibility that will be enshrined by this bill being passed by this House. Having worked in aged care I understand the importance of putting in the right kinds of protections to help those who help others. This legislation will make a big difference by proactively stopping unscrupulous actors from undermining our system and putting other people's lives at risk. Taking a strong stand on this issue could not be more important.
Given the current provisions are too narrow, this legislation in effect closes a potential loophole and undermines vested interests which are seeking to exploit the system as it stands. Pre-emptively banning someone from providing services to the NDIS may feel harsh, and, indeed, in most circumstances it is—but not in these circumstances. The reality is that, if somebody has been identified as unsuitable, due to their past actions, to work with persons in fields such as aged care or child care, they should not be allowed to do so under the NDIS. Far from picking people out for exclusion, this bill is about keeping consistency and justice at the core of our system, and is designed to protect people.
All too frequently, bureaucracy gets in the way of people; it disempowers them. We see it with startups looking to innovate, we see it with small businesses try to pay tax and now we are seeing it with the most vulnerable members of our society. It is tragic that, at a time when Australians are doing it tough, there are still vested interests that are calling for more regulation and higher taxes, all the while ignoring the fact that this puts Australians' lives at real risk. This bill takes a stand against the exclusive clubs that game the systems that Australians rely on.
Our smarter regulation agenda is not about more or less regulation but about better regulation, fairer regulation, simpler regulation; regulation that makes people's lives better, not worse; regulation that empowers individuals to make decisions so they can make their lives better. It is not about higher taxes but about simpler taxes, fairer taxes, that help small businesses run by mums and dads.
Smarter regulation is empowering those with disabilities to pursue their own goals and to live a fulfilling life. Smarter regulation is providing that base level of protection and assurance. This has been the foundation of Australia's prosperity, which has been slowly chipped away with the passing of new and more regulation and higher and higher taxes. As we look towards our post-COVID-19 recovery plan we will be relying more than ever on streamlined regulation where no-one is left behind. This especially includes those with a disability, the elderly and children.
This proposed measure will expand the NDIS commissioner's powers to allow a banning order to be made in relation to a person who was but is no longer employed by an NDIS provider. The current legislation requires individuals to be employed at the time for the banning order to apply. This means that those who are guilty of gross misconduct could be working in a similar or, indeed, the same field, as long as it is not with the NDIS or an NDIS provider. This may very well be putting Australians in danger. It is something that we need to stop and stop now. This is a time for decisive action in defence of the vulnerable and those who may not have a strong voice.
The NDIS provider register includes a list of those who are banned. Ensuring that that list is comprehensive is an important part of the first line of defence for NDIS participants and their representatives to ensure that any provider or worker they might engage is not currently subject to a banning order. This means having a commissioner who is empowered to protect those benefiting from the NDIS. An important part of that process is being able to issue a banning order to organisations who either are employed by the NDIS or have left the sector. Currently, if an employee leaves the sector due to an issue which may result in a banning consideration, they may be able to avoid that ban. This bill strengthens the system that we rely on to help protect our loved ones.
The NDIS provider register holds information about the identity of providers and workers who had a banning order made against them by the NDIS commissioner, and includes enough information to identify them. The register is publicly available to allow persons with a disability and their representatives and providers to ensure the people they are engaging to deliver NDIS services are not subject to banning orders. This database is an important part of maintaining the integrity of NDIS and protecting people. Australians should have complete certainty that the professionals who are entrusted with their care are correctly trained, have a good track record of delivering their services and are not a risk. This bill gives the commissioner additional powers such that he can support positive outcomes for those in our nation who most need them.
COVID-19 has meant we are all focused on the safety and security of those who are most susceptible to the pandemic. Often this has significant overlap with those who are disabled and currently using the NDIS. All it takes is a single person's misconduct for COVID-19 to cause mass disruption and harm. Whilst this bill is not specifically related to the pandemic, the reality is that, by being able to pre-emptively ban people who have a history of misconduct, we are giving ourselves security against the careless mistakes that cost lives. This is more crucial now than at any other time in living memory.
Providing additional measures of support and care is time sensitive. That is why, even with the disruption that the pandemic has caused, we are prioritising this bill. It is a reflection of this government's ongoing commitment to retirees, to children, to the vulnerable and, frankly, to all Australians. That is part of what it means to have a fair go. Hardworking Australians deserve systems which protect their loved ones and provide the best possible care. This is an integral part of building healthy and strong communities. With bushfires, floods and now a global pandemic, we are relying on our neighbours and communities more than ever. The government has a critical role to play in ensuring that everyone in our community is being protected and helped and that those in need are being cared for. Building resilient communities depends on building systems that are robust and put Australians first. This bill safeguards vulnerable people by empowering the commissioner to act pre-emptively against those who are unsuitable for looking after vulnerable people, due to prior misconduct. This bolsters the effectiveness of the NDIS provider register, which in turn helps inform effective decision-making on the part of Australians.
This legislation is creating a better Australia, based on the principles of a fair go, justice and protecting those who are more susceptible to misconduct. Legislation of this kind has a negligible financial impact and it helps to create a better NDIS and a better Australia. There are many who seek a larger and more interventionist government because, in their view, government can solve all problems. The reality is that government is no replacement for robust communities or for families, especially in times of crisis. Rather than trying to prescribe what each individual requires, this government has always been about supporting the individual aspirations of Australians.
The vision of the NDIS is to do exactly that. We do not seek to have a one-size-fits-all approach, especially given the complications that disabilities can result in. It is the individuals and their carers and representatives who know best, not a bureaucrat in Canberra with a big-government agenda. We are returning the power of choice to the Australian people—the power to decide what a good life means for the individual and how best to go about achieving it. We are trusting in our fellow countrymen. For this to become a reality, the role of government is simple: create and maintain effective systems that put hardworking Australians first. We can wax lyrical in this place about compassion and care. It is easy to say; it is harder to do. This bill does that. For these reasons, I highly commend it to the House.
[by video link] I am speaking today on this bill, the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020, because we need to do so much better for people with disability, their families and carers. The NDIS is a great Labor reform. Unfortunately, its implementation has been bungled by this government's neglect and lack of interest. We have seen that reflected in the number of cases of neglect and abuse of people with disability. This just shouldn't be the case. The reports of the death of Ann-Marie Smith shocked our country. While this bill is a first step in creating a stronger framework to ban providers, we need further provisions to stop the abuse of people with disability before it happens.
We must also go further and address the systemic failures this government has allowed to develop within the NDIS. We should not be leaving people with disability vulnerable to providers or carers who do not meet the highest of standards. We should not be leaving people with disability vulnerable to pandemics, like the current COVID pandemic. We can and we must do better.
The bill seeks to broaden the circumstances in which the NDIS Quality and Safeguards Commission may make a banning order against a provider or a person. The bill also seeks to clarify the commissioner's powers. These are welcome changes and they do address areas where the NDIS Quality and Safeguards Commission's powers are too narrow. But these changes do not do enough and I support the amendments moved by the member for Barton in the name of the member for Maribyrnong. Of course we need a commission that is empowered to act if abuse is found to exist. But we also need a system that means abuse is stopped before it occurs. We need a system where oversight of the care of vulnerable people is baked in from the beginning. We've just seen in our aged-care system during this pandemic how it plays out when a regulator does not see itself as having a preventative role, and I am concerned that the NDIS commissioner remains in a similar space. Every person with disability deserves to feel confident that the care and support they are receiving is of high quality and will keep them safe. I am very concerned that the changes in this bill do not go far enough to ensure that.
Currently, the NDIS Quality and Safeguards Commission has monitoring powers, under the regulatory powers act, to enter premises voluntarily to ensure the act is being appropriately administered, and, if it is refused entry, a monitoring warrant can be applied for. However, the number of times these powers have been used has not been reported, and this again goes to how the commission sees its role. It's clear the commission is not exercising the full extent of its proactive monitoring powers or its powers to penalise non-compliant providers. Under the Morrison government's watch, the commission has received more than 8,000 complaints about the abuse, neglect and even fatalities of Australians with disability. Yet, from all of these complaints, the commissioner has issued just one fine and banned only one provider and 22 individuals. That is despite thousands of complaints and thousands of tip-offs. Something is clearly amiss here.
We have already heard about the harrowing case of Ann-Marie Smith. This just should not have occurred. Adelaide NDIS participant, 54-year-old Ann-Marie Smith died on 6 April of severe septic shock, multiple organ failure, severe pressure sores and malnutrition. Her NDIS package included six hours of support per day. It has since been reported that she only received two hours of care and was confined to a cane chair, 24 hours a day, for more than a year. Her death launched a South Australian police investigation into the carer, and the SA government created a safeguarding task force to examine the current gaps in oversight and safeguarding for people with disability. Finally, this government was pressured to commission an independent review of the NDIS commission's regulation of the provider of NDIS supports and services to Ann-Marie Smith, which was established and conducted by the Hon. Alan Robertson SC.
I say the government was 'pressured', because the review was established following public pressure and calls from Labor for an independent investigation. My Labor colleagues and I have continually argued that this should have been a broader inquiry. As we heard from the member for Barton, it should have also looked at what went wrong in the case of David Harris, an NDIS participate who was found dead in his house more than two months after his supports had been cut off. The inquiry should have been free to look at broader considerations such as whether the commission has in fact been a toothless watchdog across multiple cases, not just that of this provider, and whether the $4.6 billion funding cuts this government has made to the scheme mean that we're having more deaths in homes by neglect, because the money for regulation is just not there. The investigator should have had subpoena powers, and disability advocates should have been much better supported to engage with the process.
Despite these flaws, it's clear from the inquiry's recommendations that the NDIS commission has not been set up properly and that the NDIS minister, Stuart Robert, has failed to fix this, despite these tragic cases of NDIS abuse, neglect and death. The inquiry does not identify any failings in how the quality and safeguards commission carried out its functions around Ann-Marie Smith's death, but this is because the real reason the commission didn't fail is that the commission's scope is too narrow. It is not taking on a preventative role. It is only empowered to act once abuse has happened.
With its 10 broad-ranging recommendations, the inquiry report clearly shows that the commission and the NDIS safeguarding framework are not set up to effectively protect people who use the NDIS. The report highlights buck-passing between the NDIA and the NDIS Quality and Safeguards Commission. The problem is that the NDIS commission only regulates providers and the NDIA is set up to administer the scheme to participants. The report rightly highlights that the two agencies are not sharing information and that people are falling through the cracks of this patchy oversight. The government must respond as soon as possible to this inquiry report and implement its findings. We don't have time to waste. Ann-Marie Smith died on 6 April 2020 after years of neglect. It is now 7 October 2020, nine months later, and we still do not have the steps we need to make sure that this will never happen again.
I referenced earlier how part of what we're seeing at the moment has the potential to reflect what we've seen in aged care during the pandemic—where the regulator doesn't see itself as having a preventive role in supporting vulnerable people but rather comes in afterwards to try to fix up a mess that is already created. We know that this government was caught off guard by COVID and we know the damage that COVID has had on our aged-care facilities because of this. We know that the Morrison government had no COVID plan for our aged-care facilities. Likewise, the disability sector is still without a comprehensive government plan or support to deal with the pandemic.
We don't see the COVID contagion rates, locations and deaths for people with disability. The system of reporting is just not there. Again this goes to oversight and regulation. It goes to safety and quality. It goes to people with disability and their families and carers being able to be confident that the people that they let into their homes and the people they rely on for care are people who can be trusted and will provide them with the highest standard. That is not an assurance they can have at the moment. Unfortunately, it's not an assurance that this bill gives them.
I've heard from disability providers in my own electorate about these issues through the pandemic. They themselves are worried about the lack of planning and support that has gone into this from this federal government. Providers have told me that they don't feel supported through this pandemic. They were expected to, on their own, close or readjust their services to try to meet demand in a safe way. These adjustments were unfunded by the government. They didn't get extra support for COVID plans and communication systems they needed. Not all participants were able to adjust to new systems and new ways of working, meaning that some participants have been left unsupported and providers have been left without income.
The loading that was available to service providers through the NDIA ceased on 30 June 2020, despite here in Victoria still experiencing a very severe COVID outbreak. Providers are having to meet the immense cost of PPE, having to support their workers and trying to do the best by people with disability all without the support they should get from the federal government and all without a system that has the right level of quality, safety and oversight that vulnerable people with disability deserve.
It's not a cliche for us to say that as a society we should be judged on how we protect vulnerable people. People with disability deserve choice and control. They deserve a NDIS that works for them. They also deserve to know that the care they get is of the highest standard. As I've said before, that is not what this bill delivers. It is not what we have seen happening under the NDIS Quality and Safeguards Commission. It is very concerning—and remains very concerning for people with disability, their families and their carers and it remains concerning for the providers who want to do the best by their clients and by the people they support—that these frameworks are not in place as they should be.
They're concerned that this government has dropped the ball. They're concerned that there hasn't been action taken since these tragic deaths that I've highlighted to change the way that the system is regulated to the extent that it will mean that we are taking preventive action and not waiting for tragedies to occur, and that people with disability and their families and carers are assured that the system is set up to do the job it should—to keep them safe and to make sure they get the highest possible standard of care. We should not have a system where people have to die for an investigation to take place. We should not have a system where neglect has to occur before someone is found to be unfit to be working in it.
It's time for this government to take more action. It's time for it to take this issue more seriously. This bill starts the process. It does not finish it. I urge the government to make sure that it goes a lot further than what we have seen to date.
[by video link] I appreciate the call to speak on the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020. Since the NDIS rollout began in July 2014 until the end of June this year, some 391,999 people have become participants in the National Disability Insurance Scheme. When this scheme is fully rolled out right across Australia, some 432,000 Australians will be participants in the scheme. This comes at a very considerable cost of $23.4 million in funding in the full year of rollout of the scheme.
The NDIS Quality and Safeguards Commission was established on 1 July 2018, and its essential functions are to ensure compliance with the act and to promote quality services and safeguards. Between 1 July 2018 and 30 June 2020, the commission received some 5,784 in-scope complaints, which it has dealt with. As part of that process, the commission has banned some 23 entities, 22 of which are individuals. Fifteen of those bans were based on the suitability of the person concerned. The NDIS strengthening banning orders provisions are to provide further powers to the commission. They broaden the circumstances in which the commission may ban a worker or a provider from delivering services, even if that worker or provider is no longer operating in the National Disability Insurance Scheme. The commission may also take pre-emptive action against an individual or an organisation and, of course, it can make publicly available its decision and its resolution to ban a particular person. These are sensible additional amendments to the legislation to give the commission the power that it needs to ensure the safeguards of individuals in the scheme.
As the chairman of the Joint Standing Committee on the National Disability Insurance Scheme of this parliament, I wish to mention a couple of inquiries in the context of the NDIS that the committee is currently undertaking. One is into planning, which we hope to be able to finally report on soon. Another one is on general issues, on which we expect to issue a progress report by the end of this year. Importantly, we have two other inquiries underway, one into the work of the quality and safeguards commission and one into the role and the future workforce for the National Disability Insurance Scheme. These inquiries go very much to matters covered in this bill and also the broader NDIS itself.
Two issues are important for the future success of the scheme. One is obviously having an adequate workforce in terms of the number of people who can provide services. Another issue is skills and training, and the competency of that workforce. It's expected that we'll see a trebling of the number of workers in disability services over the coming few years, and that's at the same time that we'll need a trebling of the number of workers in aged care. So there's going to be significant demand and competition, if you like, to have an adequate workforce to provide these services. Without an adequate workforce, the services can't be provided and the scheme cannot live up to the expectations that so many Australians have for it. Equally, the quality and the training of the workforce is important, which is where quality assurance comes into play. How do we encourage service providers to prioritise quality and ensure that that quality is risk averse in terms of what's provided to the participants in the scheme? A simple tick-a-box approach is not as good as a genuine commitment to actually providing quality of services in this scheme. I sometimes wonder whether the approach that we've taken on both sides of parliament under the political hues of both the Liberal-National coalition and the Labor Party in aged care, for example, which has relied largely on a tick-a-box approach, has perhaps precluded the development of quality assurance by the providers themselves at a level that we should be able to expect from a scheme such as aged care and, now and in the future, in relation to disability services. In relation to the commission's function, developing a nationally consistent approach to managing quality and safeguards for people who have a disability and who are receiving supports or services is one of the core functions of the quality commission.
The parliamentary joint standing committee will continue to look at these issues over the coming weeks and months, particularly in relation to the quality and safeguards commission and also the workforce itself. In the meantime, this is an important piece of legislation and I commend it to the House.
I'm pleased to rise today in the House to speak on the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020. As we've heard from speakers today, the NDIS was introduced by the former Gillard government in response to the Productivity Commission recommendations, and it provides support to some of the marginalised people in our community: people with a disability, their families and their carers. It gives independence and social and economic participation to people with disability. It gives reasonable and necessary support, including early intervention. It gives people with disability a choice and control over the pursuit of their goals and planning for the delivery of their support and hopefully a nationally consistent approach. As members of parliament, we've all seen the power of the NDIS. But I think all members of parliament have also seen the difficulties in navigating and understanding the complexities and also the deficiencies of the NDIS. The bill being debated today seeks to expand the circumstances in which the NDIS Quality and Safeguards Commissioner may make a banning order against a provider or person and clarifies the commissioner's powers.
I want to spend a little time today speaking about some local cases to bring to the parliament's attention some of the examples I have come across from the community I represent. I also want to focus, in my remarks today, on a pretty important second reading amendment moved by the member for Barton. I'm very glad the member for Barton has moved this amendment, because it enables me to highlight some of the issues that I certainly come across. In the first part of the amendment we've got:
take responsibility for all 'deaths by neglect' within the National Disability Insurance Scheme, which is a Federal Government program;
And then we've got:
immediately respond to the report to the NDIS Quality and Safeguards Commissioner by Alan Robertson SC into the adequacy of the regulation of the supports and services provided to Ms Ann-Marie Smith, who died on 6 April 2020.
The amendments are appropriate. However, they do not address the failure of the NDIS and the NDIS Quality and Safeguarding Framework to prevent abuse. And I'm glad Minister Robert is at the table today because I want him to hear firsthand some of the examples from my community, where people have suffered and had a terrible experience with the NDIS.
One of the first things I did following the election in May 2019, within a matter of weeks of that election, was hold an NDIS roundtable. It was held in Goodna in my electorate, where I brought together a whole range of stakeholders, including service organisations and service providers, a number of churches that are involved with the disability sector, advocates, parents and carers. I wanted that to be the first thing I did on my re-election to this place, because the community, during the most recent federal election, made it clear to me that there were problems with the scheme, and they wanted them fixed, and I wanted to hit the ground running post that election. The shadow minister, Bill Shorten, attended that forum and heard firsthand. One of the outcomes from that roundtable was for me to write directly to the minister who's at the table now with the concerns. I requested a meeting with him and his office about those concerns, and that's what the community wanted me to raise. To this date, I've had no response to that correspondence.
I'm glad the minister just said, 'Rubbish!'
If he would like to check, or his advisers would like to check, which meeting he had advised me of hosting so I could raise these concerns, I would be happy to sit down and allow him to respond. He's called the concerns I raised 'rubbish'.
What we will see as a result of him misleading this chamber—
Mr Robert interjecting—
There you have it—a minister of the Crown saying, 'Move on, you fool.' So, when my community comes together and wants answers from this government, I'm dismissed! That's fair enough. But don't you dare—through you, Mr Deputy Speaker Vasta—dismiss the concerns. Don't wave them away like you're doing. Don't wave them away like they're an annoyance. Don't wave them away like they're some kind of irritant. They're not. These are people with real stories and real life experience. I'm going to talk that about experience today, as a result of the member for Barton's second reading amendment, so that the minister hears. It might be uncomfortable for him to hear truths, but it is time he started listening, not simply dismissing people.
I want to talk in the chamber today about a local resident who has had a horrific experience. Her name is Annie. I met with her. She is the mum of two sons who suffer from a form of Duchenne muscular dystrophy. Annie has been in touch with my electorate office since August 2018. There's been funding taken away from her plan in the past. She's had difficulty getting these reviews. She's had trouble and delays getting wheelchairs, ramps and modifications in the house to assist her sons. These are adult children who have severe and complex issues. They like to leave the house on their own for some independence. It is impossible for them to do that. It's been a struggle against all struggles for Annie. I've met with her and I've seen the tears in her eyes.
She is an amazing mum. She's on her own, but she's an amazing mum. She doesn't complain. She doesn't complain about herself. She doesn't complain about all the things she has to go without. She just wants her kids, her boys, while they're still with her, to have the quality of life that any other child would. It breaks her heart that she can't do that for her kids. I think that's the hardest thing when you meet with a parent—that all they want is to be able to do things for their kids so that their kids feel like they're valued. I promised Anne that I would raise this in the parliament today.
She's had trouble with delays in getting wheelchairs and home modifications. The latest issue is getting around legislation that has no NDIA funding for in-hospital patients. This is something people forget about. When a severely disabled person with complex health issues enters hospital for treatment, there are no support packages for them once they're in the hospital. As the mum of two sons who need constantly care, she can't leave one son at home and the other son in hospital without care. She feels completely conflicted about leaving at home one son she needs to look after, but there's no care for the one in hospital. I know that sounds silly in a hospital, but the complex needs are so varied that she needs that extra support while they're in hospital. You would think, 'Well, there are nurses and doctors there,' but they're not qualified and they simply don't have the resources.
I wanted to bring to the parliament's attention today the real deficiency for a whole range of people who are struggling. It may be a negotiation between the Commonwealth and state health systems. I understand that. But this is a real issue for thousands of people. They need to stay at home for care responsibilities but they also need to be at the hospital when people are dealing with complex health issues. There's no funding or avenues for that extra support. This is a policy area. It's not specific to the bill, but I wanted to take this opportunity to talk about this, given the member for Barton's second reading amendment today, so that we can understand the complex health and safety issues for a whole cohort of people who are really struggling at the moment. As Annie said to our office—she is just one of many—she doesn't want any special treatment. She just wants to be able to know that when her sons are admitted to hospital on alternative bases that there is proper care for them and extra support services there, so they're not a burden to the existing nurses and allied health services, and she's also got the quality of care of looking after her sons at home.
I want to quickly speak on the NDIS Quality and Safeguards Commission. Shortly after his appointment in 2018, the inaugural NDIS Quality and Safeguards Commissioner, Graham Head, gave a speech to CEDA in which he said:
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. Incidents that must be reported to the commission include the death of a participant, serious injury, abuse or neglect and importantly also the unauthorised use of a restrictive practice in relation to a participant. It does represent a significant step change in how we approach the delivery of quality services to people with disability and how we protect and prevent neglect and abuse of people with disability.
These comments have not aged well. If the commission has real teeth, then why did Ann-Marie's service provider only receive a fine of $12,600 after allowing her carer to neglect her so severely? If the commission has real regulatory powers and functions, why wasn't it overseeing the care that Ann-Marie was meant to be receiving? The government must provide answers to these questions and outline what it intends to do to ensure that the commission's powers are being properly used to prevent abuse and neglect, not just issue a slap on the wrist after the act.
The NDIS scheme is a vital national service. After seven years of the Morrison-Turnbull-Abbott government, I believe it's been slashed and mismanaged to such an extent that people are now, as we're seeing, being neglected. I want to see the minister getting real and start acting in the interests of Australians with disabilities. Australians pay their taxes. As we've heard, we cannot have a strong economy without delivering the services that people need. When it comes to the NDIS we're not delivering the services that people need.
I was relieved to see that the Morrison government heeded our calls for an independent investigation into the death of Ms Smith. The loved ones of Ms Smith deserve to know that others will not be similar kinds of victims of a failing system. It's a good start. The current scope of the inquiry—the NDIS Quality and Safeguards Commission's regulation of the late Ms Smith's service provider, Integrity Care—was clearly too limited. The inquiry needed to be free to look at broader considerations, such as whether the $30 million a year commission has been a toothless watchdog across multiple cases, where the deaths in home by neglect of NDIS participants has been exasperated by the removal of $4.6 billion from the scheme, or underspend as the government likes to say. When I use that term in my community—and I go to disability groups, parents and carers—and say, 'You will never believe what happened. There was not the demand for $4.6 billion,' people are blown away and cannot accept that that is any way in reality. Maybe I'm in an alternative universe to those opposite. When I meet with advocates they have no belief that the demand is not there. Maybe we need to work on some of the language there about an underspend versus, perhaps, in my opinion, mismanagement.
There are a whole range of findings that I know the government will have to deal with, but my final message today to the government is: please start listening to the sector. Make sure that their voices are heard. We need to continue to keep working on this scheme. It is far from perfect. It is a scheme that is benefiting tens of thousands of Australians. I know the joy that you hear from parents, in particular when they see their loved ones being able to participate in social activities or in the broader community, cannot be underestimated.
If I have achieved anything today, I'm hopeful that the minister will take onboard some of these concerns. Being the charitable person that I am, I will again forward my correspondence to him. I hope that after today we do get to sit down. It might have taken a year, but at least today we might see a meeting occur, so my residents can let him know their concerns directly.
I rise to speak on the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020 and support the amendments moved by the member for Barton. I'm pleased to follow my colleague the member for Oxley and recognise his advocacy for the vulnerable people and those living with disability and their families and carers in his community.
The bill seeks, as others have mentioned, to broaden the circumstances in which the NDIS Quality and Safeguards Commissioner may make a banning order against a provider or person and clarifies the commissioner's powers. The bill addresses some timing issues and shortfalls in the NDIS commissioner's ability to make banning orders against a worker who is no longer employed or engaged by an NDIS provider. The commissioner's ability to make a pre-emptive banning order against a person who has been identified as unsuitable to work with people with disability as a result of their actions in another field is also addressed. The changes allow the commission to make a banning order against a provider's former employee or staff and prevent the lapse of a banning order if the employer ceased to be engaged or the provider leaves the sector.
The amendments will also empower the commissioner to include details of the order, including enough information to identify the person in the publicly available NDIS provider register. While I acknowledge the government's intention to address specific areas where the NDIS Quality and Safeguards Commissioner's powers are too narrow, it has taken the government two years to act and introduce this amendment to the House.
The NDIS Quality and Safeguards Commission has monitoring powers under the regulatory powers act to enter premises voluntarily to, administer the NDIS Act and to seek monitoring warrants if entry is refused. The commission has significant powers under the National Disability Insurance Scheme Act to issue compliance notices, injunctions or civil penalties or vary, revoke or suspend registration of providers or make a banning order prohibiting or restricting specified activities by a provider or a person employed or otherwise engaged by a provider.
Shortly after his appointment as NDIS Quality and Safeguards Commissioner in 2018, Graham Head give a speech in which he said:
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.
If only that were so. However, in the last two years there have been 2,473 complains made to the commission, and the commission has only issued 23 banning orders. It's clear the commission is not exercising the full extent of its monitoring powers nor its powers to penalise non-compliant providers, and this is putting vulnerable people at risk.
Labor notes the Minister for the National Disability Insurance Scheme—I note the minister's presence in the House—said in the second reading of this bill:
The recent tragic circumstances surrounding the death of Ann-Marie Smith in South Australia have highlighted just how important it is to have the strongest possible protections available for NDIS participants.
And it is. And it must be.
As others have noted in this House, Ann-Marie Smith's death is a tragedy. While supportive of the changes, the bill does not address the underlying problems. Importantly, even if these amendments were in place at the time, they would not have prevented Ann-Marie's death. The change proposed by the government to make a pre-emptive banning order against a person identified as unsuitable to work with people with disability as a result of their actions in another field would have prevented Ann-Marie's carer from becoming her carer, but there is no guarantee that her death would have been prevented as the bill does not contain measures addressing the lack of oversight which could allow any carer to perpetrate similar abuse.
The National Disability Insurance Scheme is vital. The National Disability Insurance Scheme is lifting the quality of life of so many Australians living with disability for their carers, for their families and for their loved ones, but it is falling short and, tragically, the mismanagement and underinvestment by this government has sadly led to the death of Ann-Marie Smith and to the neglect of many others who are in the care of this government.
Labor was relieved when the government heeded our calls for an independent investigation into Ann-Marie Smith's death. Labor called on the government to broaden the inquiry to review the case of David Harris, whom other people have mentioned, an NDIS participant who was found dead in his house more than two months after his supports had been cut off.
While we recognise the inquiry was a good start, it has fallen short and it is clearly too limited. The inquiry needed to be free to look at broader considerations, such as whether the $30 million-a-year commission has been a toothless watchdog across multiple cases—not just the case that has brought this amendment to the House, not just the case of Ms Smith's provider—where the deaths in home by neglect of NDIS participants have been exacerbated by the removal of $4.6 billion from this scheme, as so many others have mentioned. When we have so many vulnerable people, so many people waiting for the support that they need, when we have seen so many delays, when we have seen so many errors, how can this government stand by and allow this to happen?
There also remains a clear conflict of the commission appointing the investigator and the investigator reporting back to the subject of their inquiry. The investigator needed subpoena powers, and disability advocates should be supported if they wish to engage with the process. We welcome the appointment of the investigator, who is, at least ostensibly, separate from the NDIA, but this is not enough.
As we know, the Robertson report was released at the end of August. The review found there was no wrongdoing when the commission set out to protect NDIS participants and issued a meagre fine of $12,600 for failing to notify the commission of Ann-Marie's tragic death. We now know that this is the only infringement the commission has issued in two years of operating—the only infringement. During the coronavirus pandemic, the commission has contacted NDIS participants on only one occasion, in a joint letter that participants received in early September. Disturbingly, witnesses at the recent hearing of the inquiry into the NDIS commission overwhelmingly told the NDIS joint standing committee that most people have never heard of the NDIS commission. Most people don't know it exists. How can people receive support from it if they don't know it's there to protect them? How does this work in practice if a person has an issue with their provider but doesn't know that they can get support through the commission? They don't know it exists.
The NDIS commission only regulates providers, and the NDIA is set up to administer the scheme to participants. Justice Robertson says the two agencies are not sharing information and acknowledges that, without this communication, people could easily fall through the cracks between these silos. The government has a responsibility that it can't walk away from—a responsibility to help NDIS participants understand the role of the commission and their rights if they experience problems with their providers. But, sadly, after years of funding cuts and neglect and mismanagement, people are dying of neglect in their homes and not receiving the support they deserve.
I'm going to turn to some local examples. I know so many of us have had so many people come to us when they have been let down, when they haven't received the support that they deserve and that they need. Wendy from Chittaway Bay in my electorate needed home modifications for her wheelchair so that she should stay independent in her home. She applied for NDIS funding. As a participant, there were several quotes presented to the NDIA. The quotes ranged from $41,200 to $80,000. The agency settled on the lowest quote, despite Wendy's concerns about the builder.
When the building work started, Wendy did the right thing and contacted the local council about certification and was advised the builder hadn't submitted a construction certificate. Wendy was then faced with threats from the builder to pull the modifications down. She then lodged an application with New South Wales Fair Trading and, later, NCAT. When consent orders of $65,000 were reached, the builder made an admission—he wasn't qualified to do the home modifications and had no builders home insurance. This was the builder the agency had chosen to do the modifications on Wendy's home.
This has been ongoing for five years, and Wendy had been left with a house that's considered unsafe because it can't be certified, and unsaleable. She's also been billed almost $15,000 in pursuing this through an NDIA recommended lawyer. Because of the choice of the builder by the NDIA, Wendy has been through New South Wales Fair Trading, the NDIS Quality and Safeguards Commission, and NCAT and is living with the personal and financial consequences of this mistake. It shouldn't be so hard for somebody like Wendy to get the home modifications she needs to be independent and safe within her own home.
I now turn to Margaret from Bateau Bay. She recently contacted my office concerning her prosthetic limb, which was provided under her NDIS plan. It's a prosthetic leg that doesn't fit. After trying to negotiate with the provider, she's been asked, personally, to pay more to fix the prosthesis. This is money that Margaret doesn't have and shouldn't have to pay. Mistakes happen. But, when they do, processes should be in place to fix them, and people like Margaret should not have to foot the bill to pay for the NDIA's mistakes.
I'm now going to turn to carers, because we know that so many carers have been so impacted through COVID-19, and carers of people living with disability, particularly children with disability, have been particularly vulnerable. Next week, as we know, is National Carers Week. I would like to thank all of those carers across Australia for the unpaid care that they provide so generously and without any recognition. They deserve to be acknowledged.
When the NDIA fails, it's not just participants that are affected; it's their families and carers that are impacted as well. A recent survey by Mental Health Carers Australia on the impacts of COVID-19 in NDIS participants with psychosocial disability found provision of NDIS supports for participants, families and carers had dropped significantly. Sixty-one per cent said lockdown had impacted NDIS supports they'd received, and 80 per cent had not been in contact with their NDIA provider regarding their plan. The survey found families and carers had stepped into the breach left by providers and it was impacting their mental health. Seventy-five per cent of these carers were concerned about their family's mental health, and 65 per cent were concerned about their own emotional wellbeing.
Nearly 50 per cent reported their caring roles increased significantly, to more than what they could cope with. Unsurprisingly, 73 per cent of these carers were aged over 50, and nearly all of the respondents to the survey were women. For many of them, the day-to-day expenses increased by over half, and most of these carers are retired or working part-time because of their caring responsibilities. Finally, the survey found that carers were an at-risk group: more vulnerable to COVID and more likely to be struggling financially. These figures provide just a snapshot, a little insight, into the carers of people receiving NDIS support for psychosocial disability. They reflect the strain being felt by the wider carer community.
The Caring Fairly Coalition Caring during coronavirus survey highlighted the impact of the virus on the carer community. Sixty per cent of carers reported losing some or all of the support for the services for the person that they cared for, and four in five said that their mental health had deteriorated since COVID-19. Nearly 90 per cent had experienced increased stress in their role as a carer, and close to 40 per cent reported losing some or all of their regular income. Given these impacts, it's no surprise that less than six per cent of carers reported that the Australian government was providing enough support for carers during the pandemic. It's not hard to see why carers feel overlooked. It's not hard to see why carers feel they've been left behind. Unpaid carers, Minister, should not have to pick up the slack for the government's failure to manage the NDIS.
The NDIS was built by Labor. Since it was introduced, it has helped people across Australia living with disability to have a better quality of life. However, over the past seven years, it has been mismanaged. It has been neglected. People—sadly, tragically—have died of neglect in their own homes. People in my community have been left behind. People in my community are struggling. People in my community who are living with disability have been overlooked by this government. And it's people in my community and their circumstances that reflect those of people across Australia. People living with disability and their families and carers have been left behind by this government, Minister. They deserve better. Nobody should be left behind by this government. No vulnerable person, particularly during COVID-19, should be left desperate to the point that they believe their own mental health and wellbeing are at risk because of their disability or because of their caring responsibilities. It is not good enough, Minister. They deserve better. They deserve better from you, and they deserve better from this government.
The government talks about the NDIS being fully funded, and it ripped $4.6 billion out of the scheme.
Mr Robert interjecting—
You, Minister, have oversight of this. You, Minister, are responsible for this. People with disability in my community and across Australia deserve better from this government. They deserve dignity, they deserve respect and they deserve empathy. That's what they deserve.
[by video link] I rise to speak on the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020. On behalf of the people of Corangamite, I do welcome the introduction of this amendment to the legislation that underpins the National Disability Insurance Scheme. However, it must be said that this amendment is, tragically, too little too late. For countless NDIS participants a lack of safeguards and protections has resulted in significant suffering and death, and this has happened under the Morrison-McCormack government's watch. While this bill will permit a commissioner of the scheme to place a ban on a former employee under the NDIS, this amendment will not bring Ann-Marie Smith back. This system and the Morrison government failed Ms Smith in the most egregious way. The bill will also identify staff that have clearly breached acceptable conduct. But, again, this amendment has been introduced after the horse has bolted. Too many people have suffered. Too many people have died. We need the watchdog to wake up and do its job and protect our most vulnerable.
Ann-Marie was an NDIS participant. She was a 54-year-old Adelaide resident who died earlier this year of severe septic shock, multiple organ failure, pressure sores, malnutrition and issues connected with her cerebral palsy after being confined to a cane chair for more than a year. What a shocking indictment on the Morrison government's inept management of the NDIS system. The minister must take responsibility for this shocking tragedy. To give the provider a banning order and fine them $12,600 is woefully underdone. Is this how much Ann-Marie Smith's life was worth? It is insulting, disrespectful and pathetic.
Ann-Marie Smith is not the only participant who has suffered due to the watchdog's underperformance. David Harris suffered from schizophrenia and diabetes. After being excluded from the NDIS because he missed an annual review, Mr Harris was found dead in his Parramatta home. He had died two months earlier. Another 12,000 Australians with disability have died while waiting to be funded by the scheme. Ann-Marie Smith's death was a tragedy. David Harris' death was a tragedy. They were both preventable. These deaths need to be approached with remorse, reflection and an honest, heartfelt commitment to do things better. The Morrison government must do better.
I acknowledge the government has undertaken an independent investigation into Ann-Marie Smith's death, but this only occurred after the shadow minister and the disability community applied significant pressure. And it should be noted the scope of the review only extended to the NDIS Quality and Safeguards Commission's regulation. This was far too narrow an investigation. The inquiry should have taken a broader view, including the events leading to David Harris' death and the other victims of insufficient safeguards within the system. A more earnest investigation would include why current monitoring has failed, and what impact $4.6 billion in funding cuts under the Morrison-McCormack government has had on the system's capacity to do its job. The investigator did not have, but should have had, subpoena power to conduct the inquiry.
Former Federal Court Justice Alan Robertson's review into Ms Ann-Marie Smith's death included clear recommendations to improve oversight of the NDIS provision. These included: identification of people with disability who are vulnerable to harm and neglect; a crosscheck of care provision by having more than one carer for vulnerable people; a clear identification of the primary responsible carer of every vulnerable person; a community visit scheme; spot checks; clearer reporting requirements; and better and more communication between state and territory emergency services, the NDIA and the commission. Justice Robertson's report also highlighted an unproductive blame culture between the NDIA and the NDIS Quality and Safeguards Commission. Importantly, it found that the two agencies are not sharing information, and people can easily fall through the cracks of government bureaucracy. These are clear instructions to this House.
It should not be lost on us that throughout the coronavirus pandemic the commission has only reached out to NDIS participants once. This was in a joint letter only sent to participants early last month. The NDIS joint parliamentary standing committee, of which I'm a member, was very concerned by witness testimony that the NDIS commission was not known to participants and carers that most depend on its work. We cannot be surprised the scheme is not adequately looking after participants, when participants do not know how the safeguards work and who they should turn to when they do have a concern. Even where participants know and engage with the commission, more than one-third of their complaints hit a dead end, without further action. This is the failure of half-measures and a system that does not adequately monitor, evaluate and act on its own failings. The Robertson review has made it clear that the government must reform the functions, powers and capacity of the NDIS Quality and Safeguards Commission to respond to the concerns and complaints of NDIS participants.
In my own electorate, many carers and people with disabilities have contacted me with their concerns about the NDIS. Because of this, I have formed my own reference group, who come to me regularly to discuss the issues and suggest how we can improve the system. One example is the case of a six-year-old boy with a long and complex medical history who has had issues with the NDIS. He was rejected for respite care twice, even though the NDIA agreed he qualified for support, given his situation. It is now under review, following advocacy from my office. It is still under review, but it should not have to take the intervention of a federal MP for participants to get the help and support they need. This is just one example of a system that has not accurately assessed the needs of participants. The result is ongoing anguish, anxiety and exhaustion for many participants and their families and carers.
It is an unacceptable moral failing for this House to presume that everyone who receives support from the NDIS is in a position to speak out when they need to. The system should be built to help people reach out when they need help, not make it harder for them. It needs clearer inbuilt protections to support our most vulnerable. The Minister for the National Disability Insurance Scheme has commented that we need the strongest possible protections to be available for participants. The Labor Party couldn't agree more. Australians couldn't agree more. So here's the question: where are the protections? True to form, the Morrison-McCormack government has responded to public outcry with aggressive commentary but little action—all announcement, no delivery. It is not good enough.
Every day, individuals and families in my electorate, who I proudly represent, depend on the National Disability Insurance Scheme. Carers and families do a great job, and I would like to take the time to acknowledge all the carers out there who work so well and so diligently to support people with disability. More than a quarter of a million Australians access the NDIS. It is not good enough to tinker around the edges with amendments to laws that sound well targeted but fail to deliver desperately needed reform. A properly functioning support structure for people with disability is not an add-on; it is not a luxury. It is an investment and it is an absolute necessity to ensure we protect our most vulnerable. We owe it to all Australians to get this system right.
Labor welcomes the introduction of the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020. The bill seeks to broaden the circumstances in which the NDIS Quality and Safeguards Commissioner may make a banning order against a provider or person and clarifies the commissioner's powers. After the first reading of this bill, the minister stated:
The recent tragic circumstances surrounding the death of Ann Marie Smith in South Australia have highlighted just how important it is to have the strongest possible protections available for NDIS participants.
I won't go over the details of Ms Smith's death again. Previous speakers, particularly the member for Barton, have eloquently detailed those tragic circumstances. Suffice to say, we know there was an absolute failure of the system.
The National Disability Insurance Scheme is a vital national service, intended to be the most significant economic and social reform in Australia for more than a generation. Unfortunately, the NDIS has not lived up to its full potential of delivery of quality services to people with disability. Mismanagement at the hands of this government has meant that we are still tinkering with the legislation, still amending the scheme, still hearing far too many horror stories of people falling through the cracks. Minister Robert has so far presided over $4.6 billion being ripped out of the NDIS and 1,200 Australians with disability dying while waiting to be funded by this scheme.
There are more than 8,000 NDIS participants in Tasmania, more than a third of whom reside in the Derwent Valley in my electorate. It is of the greatest concern to me that even one of these people may not be getting the support and services they need or, worse, that there may be incidents of serious injury, abuse or neglect that are going unreported or ignored because of systemic failures. Recently my office had the opportunity to meet with Greg Harwood, a director of Access Coordination Tasmania. I sincerely thank Greg for sharing his knowledge and expertise and helping me and my staff better understand the issues facing the NDIS, especially in Tasmania. Greg and his partner, Suzie Marston, operate Access Coordination Tasmania, a small NDIS provider based in regional Tasmania primarily delivering NDIS support coordination and service development to NDIS participants. Greg explained that a large part of the business for their eight staff is working towards getting people's NDIS plans up and running within eight weeks of the plan being approved.
So I was shocked, dismayed and angered to learn that it is not uncommon to have months of delays in plans being implemented. One young family, who have had their son's NDIS plan in place since December 2019, was only recently referred to Access Coordination Tasmania and connected with support coordination. That's nine long months in which funding has been parked, of no benefit to anyone—nine months of uncertainty. I'm told that this plan will now have to be reviewed to meet their needs. It just is not good enough. Unfortunately, delays such as this are inevitable when the system is so drastically underresourced. Working day to day on the ground in the sector, Greg said it was clear that the disability workforce is increasingly casualised and reliant on frontline staff who may not have the training, experience or support to deal with high-risk clients. I have previously mentioned in this place concerns raised by the Health and Community Services Union, which represents disability workers, that work in the disability sector is increasingly insecure because of the nature of the NDIS model, where fixed-term contracts and yearly funding reviews are industry standard.
We know that the intention of the proposed amendments to the NDIS Act, from the Tune report, is to address the length of plans. However, we are yet to see that this will be the case. This is a workforce that has often been undersupervised, working across multiple locations and without the oversight mechanisms in place to ensure that reporting and regulatory requirements are properly carried out. The government has not invested in the workforce or the infrastructure that supports that workforce to make this scheme work as well as it could and should. We know that frontline staff such as disability and aged-care workers are some of the lowest-paid in this country. Overwhelmingly they are women. Yet we place them in extremely physically demanding and high-stress situations where they are responsible for the welfare of our most vulnerable citizens.
Agency and NDIA staff are also impacted. One of the main complaints to my office is that there is no consistency for clients as to whom they deal with through the NDIS. It's a lottery on the phone. This is very much a consequence of the federal government's decision to understaff the NDIA, with 3½ thousand staff when it commenced instead of the Productivity Commission's recommendation of a minimum of 10,000 staff nationally. Families might deal with three or four people about their plan and have to explain the same issues over and over again. The gap between people who have local area coordination services, and agency assigned planners, and those who need to move between them creates much of that turbulence. A high turnover of staff, minimal training and a huge volume of work for agency staff means it is just not possible to develop specialist knowledge.
Access Coordination Tasmania suggests there should be planners in every region and they should have more specific training and knowledge of the most common and challenging disabilities in their regions: local knowledge on the ground. In Tasmania, as well as having impacts on the workforce, under-resourcing also means there are a lack of facilities and services within the community that provide the specialist disability supports and care that many people accessing the NDIS require. In particular, a severe shortage of high-support-needs short-term accommodation for people with challenging behaviours results in families with no support options.
Some of the 8,858 NDIS clients in Tasmania end up in hospital because appropriate discharge and specialist supports in accommodation are not readily available. This has been exacerbated by the impacts of COVID-19. NDIS clients were rushed out of hospital and into accommodation that was intended for that purpose. One respite centre in the north of Hobart, for example, has been reportedly full for more than four months, preventing others from accessing this service—even though it does not provide the high-needs services that many of these clients need, which is why they're in hospital or other settings in the first place. Another example is the lack of readily available respite for people with motor neuron disease or Huntington's disease, despite Huntington's in Tasmania representing the second-largest cluster of people in the world with this disease. Access Coordination Tasmania spent last year working to find suitable short-term accommodation for one participant who has been in the Royal Hobart Hospital for seven months, waiting for respite. The pandemic has further highlighted this issue of a lack of facilities and supports available to people with a disability and their families within the community.
For service providers such as Access Coordination Tasmania, so many of the ongoing issues with the scheme come down to underresourcing of the workforce, of the agency, and of educating the mainstream community about what the NDIS does. Greg made the point that this particular social reform, the implementation of the NDIS, lacked public messaging or effective advertising about the scheme, undermining its very intention of supporting Australians with a disability to fully participate in mainstream society. The lack of understanding from the general community—despite the general community having an overwhelmingly positive attitude towards the NDIS as a whole—and particularly from mainstream support services about the responsibilities of the NDIS is one of the main issues that face providers like Access Coordination Tasmania every day. The government simply hasn't done enough to inform people what about the NDIS does, and how it does it, and what it should be doing. Greg said that he often must explain to mainstream services—like housing, justice, aged care, home services and mental health et cetera, agencies that should be better informed—just what client responsibilities are theirs and what the responsibilities are of the NDIS.
Recently, for example, a client of Greg's with Huntington's was returning home to Tasmania from Queensland and was required to undertake 14 days of hotel quarantine. Access Coordination Tasmania contacted the state government to advise the state controller of the specialist needs and support required for this client. Unfortunately, those required supports were not put in place and the end result was this gentleman being put in a taxi and sent home. Greg says this is just one of the many examples he has where mainstream services are not clear on what their duties are. Instead, they expect NDIS to take on a responsibility that may not be theirs and, ultimately, leave a client without the support or care they need.
The Carers Tasmania 2019 NDIS satisfaction survey tells a similar story. There are still many carers who appear to be overwhelmed, distressed and/or disillusioned with their experience with the NDIS. More than 20 per cent said that there had been little or no improvement since they first engaged with the NDIS and 75 per cent of those caring for a person assessed as ineligible for the NDIS stated that they had no contact with the local area coordinator, despite the fact that one of the roles of a local area coordinator is to assist those ineligible people to access supports in the community. Carers feel dismissed, unclear about how they can be involved and unsure where they fit in a system designed to give the person with the disability choice and control.
This bill is a step in the right direction, but it is clear that there are fundamental systemic issues within the NDIS that need to be urgently addressed. I note that the NDIS Quality and Safeguards Commission report into the death of Ms Smith suggests that steps need to be taken:
… to identify earlier those people with disability who are vulnerable to harm or neglect. Every stage of decision-making, including corrective regulation, should be alive to factors indicating that a participant may be vulnerable to harm or neglect.
… … …
(2) No vulnerable NDIS participant should have a sole carer providing services in the participant's own home. The relevant statutory instruments and guidelines should be amended to provide expressly for this.
(3) For each vulnerable NDIS participant, there should be a specific person with overall responsibility for that participant's safety and wellbeing.
There are broader questions too that need to be addressed. From what I am hearing from providers and NDIS clients there is certainly an argument to be made that the role of the commission can be strengthened. Access Coordination Tasmania would like to see more regular community visits from the commission, including random spot checks and an improved feedback system. Participants living on their own or with a single parent should receive higher amounts of diverse supports and not rely on a single service to own that responsibility. The government must provide answers and outline what it intends to do to ensure that the commission's powers are being properly used to prevent abuse and neglect, not just issue a slap on the wrist after the fact.
The National Disability Insurance Scheme is a vital national service, but after seven years of Liberal rule and mismanagement it has been slashed and mismanaged to such an extent that people are literally dying of neglect in their homes. The minister needs to get real and start acting in the interests of Australians with a disability. Australians pay their taxes so that when they are vulnerable they are not left to die in squalor. This kind of system failure resulting in death by neglect needs to be approached head on with honesty, genuine reform and enough money to get the job done.
The NDIS was designed by Labor to empower people with disabilities to make their own decisions about the care that best supports them and their goals. For that to occur many things have to go right. Many systems have to be functioning effectively so that the support packages people receive are fair and tailored to their needs. There also has to be effective oversight and safeguards to ensure that when people are not treated fairly there is an appeals process that delivers fairness—and I'll speak more about that a bit later. Those protections and safeguards also have to include the providers of care and the staff that they employ.
People living with a disability and their families need to know that serious injury, abuse, neglect, unauthorised restraint or, at the very worst, death will not go unnoticed or unpunished. Recent very public and tragic cases have demonstrated that to date those safeguards simply have not been in place. The death of Ann-Marie Smith—a woman close to my own age who was living in Adelaide and died of severe septic shock, multiple organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy after being stuck in a cane chair for 24-hours a day for more than a year—tells us that something is seriously wrong.
Her NDIS package included six hours of support every day. The evidence indicates that she received only two hours of care a day and may not have left her home for years. How this happened, without anyone knowing about it or doing something about it, beggars belief. This woman was not given a chance to thrive.
This is also the nightmare of every parent with an adult child with a disability. I remember back to the years between 2010 and 2013 and the discussions about this new NDIS system, and how it might work, that I had with many people who either had a disability or cared for a child with a disability, and that child might have been an adult. While it was clear that parents with young children were just swamped by the need to provide the best possible early interventions and were faced with the relentlessness of caring, there was another group of parents who were worn down not just by years of care but by decades of it. They were the aging parents of an adult child with a disability. Their stories were heartbreaking. A very common scenario was that they really felt they had only two options before the NDIS—that, generally, at least one of them had to give up a full-time job to be a full-time carer. This had the effect of drastically reducing their income, which, over time, pushed them into poverty. Their other option was to relinquish care of an adult child into a group home, which many felt they were just unable to do, or did so with enormous guilt.
These were very common stories that I heard as the NDIS was being formed. What they all said to me was that they weren't worried about the fact that they were exhausted. That was okay—they very generously provided care for their child. They weren't so worried even about their own health. They recognised that that was a consequence of the load they were carrying. The last of their concerns was not having money. But they were worried about what would happen to their son or daughter if they died first. That was the most oft-spoken phrase to me. What keeps them awake at night is the thought of who is going to look after the child—and the child may be in their 30s, 40s or 50s. I heard this from parents who were in their 80s, their 60s and their 40s. They could see a future without a scheme like the NDIS.
Providing secure residential care, supports with dignity and allowing people to live in their own home, the home of their choice, were an absolutely prime and fundamental objective of the NDIS. But in the way the system has been implemented it has failed people. It certainly failed Ann-Marie Smith. To my mind, that means the minister has failed Ann-Marie Smith. The fact that, following the investigations that looked into this case, the service provider received a fine of $12,600 after allowing the carer to neglect her so severely, tells you that this legislation today is desperately needed.
There's also the case of David Harris in Parramatta, who died after his NDIS payments were cut off. That also needs serious investigation to understand the systemic flaws that led to it happening. David was also around my age. He suffered schizophrenia, was diabetic and incontinent and needed regular injections and he missed an annual review meeting. This meant that his funding was simply cut off and his cleaners and other NDIS funded support just stopped. It simply stopped and no-one thought, 'What's the consequence of this for David?' This is the stuff of nightmares that families in my electorate are going through. They're concerned about plans being ended and there being no plan in place. They lie awake at night worrying about this.
I'm going to talk about some of the things I'm currently seeing in my electorate, but I also want to point out the banning orders. When we hear cases like this, it is just staggering that only 13 banning orders have been made in the last 18 months—1,422 complaints and 13 banning orders. We don't really know the details of the neglect or the abuse in any of the complaints that were made. The lack of transparency is frightening. The only way schemes like this function is with transparency—transparency and accountability.
I spoke with an NDIS participant today. She confirmed with me that she and others who are friends who have packages have had to make complaints to providers about carers. She had a circumstance where one provider tried to sell her mother a house that this young woman could live in, when the young woman had already declined that offer. There are flaws that run through this, and if we don't get it right for those serious cases it just goes all the way through the system. I'm all for this legislation supporting far greater scrutiny and protections, and I would like to see other checks and balances put in place to ensure that there is respect for people, that they have the choice that this scheme's designed to give them and that they have control.
I want to talk about some of the circumstances that we're seeing right now with the NDIS. I'm going to talk about a couple of screaming flaws that this legislation certainly doesn't go anywhere near addressing. This really goes to the fear of the consequence of missing a review or failing in a piece of paperwork that's required. The system is so heavily dependent on forms being filled in, procedures being followed that can seem so opaque to people, reports being made and reports that are missing.
I want to give you an example that Sandy has shared with me. Sandy is an incredible advocate for people with disabilities, for carers and for children with disabilities. She has a nine-year-old daughter, Imogen. Imogen has multiple diagnoses, including autism and ADHD. It is a very complex mix of things. Imogen communicates using words and picture cards. She's mostly non-verbal, but she has a very fierce routine that she relies upon and that Sandy relies upon. Recently, Sandy talked to me about the fact that their plan was due for renewal. She was thrilled to be told by the NDIA that she wouldn't require a full review and that she would be able to roll her plan over. It would just be a phone interview and some basic documents that she would need to upload. She was told that this was a formality only and that the plan would be approved on a like-for-like capacity.
Then, on the very day that the plan was to expire, she was told that the NDIA did not think the supports Imogen relied on last year were reasonable, necessary or good value and that a behavioural plan had to be in place before any decision could be made. This is on the very day that her plan was about to run out. A mother who has gone through this year after year was, for the first time, being told that it could roll over, and she knew the progress her daughter was making. What's more, her doctors knew the progress her daughter was making; it was all documented. And, as it turns out, there was a behavioural plan in place—a 49-page document that had been facilitated through Imogen's school. The NDIA were unaware that it even existed because they had failed to provide funding for it in previous plans. So there you go; that's what a mother was facing.
We've been able to ensure that Imogen's plan has been provided for the next three months. It has been extended so that further evidence can be given to the NDIA. To put parents through this sort of agony as their child's plan expires is an absolute disgrace and a fundamental flaw in the way the system is working—or, quite frankly, not working. Sandy's case is not the only one; I get these situations happening time after time. While we welcome the legislation today, what we need to see is a far greater review of how the NDIS is working to ensure that parents are not put through absolute agony time after time and are not asked to film their children's behaviour as evidence. When a child is suffering, the last thing a parent needs to do is get out the camera on their phone and film it. They need to have the freedom to comfort their child.
It's about time the NDIS was designed to support people with disabilities and their carers so they are able to do what's right for those people, whether they're young children or older children. The legislation today is welcome, but it falls well short of what we need to see this government doing to bring decency to the treatment of people with disabilities.