Stephen Jones (Whitlam, Australian Labor Party, Shadow Assistant Treasurer) Share this | Link to this | Hansard source

Before the adjournment I was advising the House of my constituent and the circumstances of Mr Rafal Oleszczuk, who contacted by office last year together with his partner, Karina. The tragic story is as follows. In 2009 Rafal suffered a serious motorcycle accident and lost a leg. According to his wife, since 2009, he has had to rely on a very basic, unsafe and painful prosthesis that doesn't fit properly. He could only wear the prosthesis for one hour at a time, and even so, when he wore it, it left him with scars and blood boils, which ultimately burst during the course of that one hour. All of this restricted Rafal's range of movement in his access to the wider community, activities and prospective employment opportunities.

When the NDIS was first rolled out in the Illawarra, in 2017, Rafal and his family hoped for a prosthesis that was state of the art—one that he could walk in, one that fitted him properly, one that would allow him to return to the workforce. In 2019 Rafal and Karina lodged an application for an NDIS plan. They included in it everything they needed, including doctors' and specialists' reports, impact statements and the requisite quotes. The plan was approved within two months; however, there was one glaring omission. There was no funding for the leg. According to Karina and Rafal, there was funding for core supports. They were great, but without access to the prosthesis he had no capacity to access those supports. This is typical of lots of examples that come across our desks.

They lodged a review to include the prosthesis in the new plan under advice that, unfortunately, it would take some time to process as they were a high-price item. After waiting five months, Rafal and Karina contacted my office seeking assistance, and they got it. We immediately followed up with the NDIS and within two months I was advised that the quote for the new prosthetic leg had been approved.

Earlier this year we were contacted by Karina and Rafal, who told my office that since Rafal's new prosthetic leg had been fitted he'd been able to use it. Rafal's now working full time. He has changed careers and has himself become a disability support worker. This is a success story. It shows how the NDIS, as originally conceived and properly implemented, can transform lives. It can enable people to get their lives back together and contribute as productive members of the workforce in the way they wish to. According to Karina, Rafal's much happier, is more independent and is increasingly able to engage in social activities.

Over the next couple of weeks members of this place will stand to celebrate the achievements of our Paralympians, and we should. People like Rafal will never represent Australia in the Paralympics but their situation is worthy of our attention. I simply say to the government: instead of seeing the National Disability Insurance Scheme as an opportunity to withdraw $4.9 billion from the scheme to fund an elusive budget surplus that never actually occurred, focus yourselves upon the circumstances of people like Rafal. When we're cheering on our Paralympians, as we should, we should look what more can be done for the greater number of Australians who will never get that sort of recognition or adoration but deserve our support so that they can participate meaningfully in our society. Whether it's a prosthetic leg which transforms somebody's life and enables them to get back into the workforce and assist other people, whether it's the simple equipment that is needed for people—a wheelchair, or a bed which enables them to sleep properly—whether it's transport or whether it's the right sort of care and support that they need, these are the services that the NDIS was designed to improve.

So much has been frustrated over recent years. We need to get the scheme back on track. We welcome the fact that the government has belatedly moved to implement the outcomes of the Robertson review, but much more needs to be done so the scheme can live up to its full potential.

Amanda Rishworth (Kingston, Australian Labor Party, Shadow Minister for Early Childhood Education) Share this | Link to this | Hansard source

[by video link] I really am pleased to be able to speak on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021. It is unfortunate that this bill had its origin in the tragic death of Adelaide woman Ann-Marie Smith, who, sadly, was not only the victim of eight years of coalition mismanagement of the NDIS but the victim of severe neglect at the hands of her carer.

The Morrison government has so far presided over underspending $4.6 billion of the NDIS. There have been 1,200 Australians with a disability who died while waiting to be funded by the scheme. And, of course, there were the tricks and deception by the government to ram through, without proper consultation, independent assessments that were not supported by many living with a disability and that those in the disability community were certainly not consulted about. Labor welcomes the Morrison government's decision to act on the recommendations of the Robertson review, even though it's now 12 months since the report was handed down and 16 months after Ann-Marie Smith passed away. Neglect and slowness to act have become this government's legacy. Even though they are acting now, the Morrison government's lack of consultation and their continuing failure to consult people with a disability and their families on changes which directly impact their lives seems to continually happen.

Of course, everything possible should be done to protect people with a disability from neglect and abuse, and, while this bill does not address the gaping holes in NDIS safeguards, we will support this bill. More must be done to address the lack of proactive checking on service providers and the ineffective and understaffed NDIS commission. The concerns of stakeholders and people with a disability in relation to privacy and information sharing have not gone unheard. Labor recognises that the right to privacy is just as important as the need to protect. That is why, it's come to my attention, Labor will move amendments in the Senate to look at this very issue.

Without a doubt, one of the biggest issues raised with me is concerns about the NDIS. What is so disappointing to me is that the NDIS, as a scheme, should hold the key to both economic and social empowerment of people living with a disability. Unfortunately, though, under the stewardship of this government, my office has been constantly receiving requests for help, as I know many other members have, from NDIS participants, their families and their carers, often at their wits' end.

I will speak a bit about Ann-Marie Smith. The Adelaide NDIS participant was just 54 years old when she tragically passed due to severe septic shock, multiple organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy, after being confined to a cane chair 24 hours a day for more than a year. Ann-Marie Smith's NDIS package included six hours of support per day. Reports are that she only received two hours of care per day and had not been seen outside her house in years. Of course, it must be said again that this should never, ever have happened. What happened to Ann-Marie should never have occurred, and it should never occur again in this country. Ann-Marie's story is nothing short of a tragedy. She should be alive and thriving today. Instead, she was neglected and abandoned and has now, sadly, passed away.

This is the nightmare that every parent of a child with a disability is scared of. This is what I hear over and over again from parents of a child with a permanent disability. They are constantly worried about what will happen to their child when they are no longer around to provide that care and support. The system should have protected Ann-Marie. It should have protected and cared for her. I've heard many stories from my electorate, and the parents I meet do not have faith that the NDIS system will be there to provide the important care and support that it was designed to or that their children's future is secure as they grow older. We cannot let this happen.

In my electorate, as I said, I regularly have issues raised with me and hear stories about the government's mismanagement, and I wanted to touch on some of those today. One of the most common issues raised with me by local NDIS participants are the delays they continue to face when they seek urgent changes or renewed plans. One participant contacted my office in February seeking help to navigate the bureaucracy of the NDIS. His NDIS plan was funded until 7 April, with supports to help him with some of the most basic daily tasks, like getting up from his chair, changing his clothes and personal hygiene. He contacted my office in February seeking urgent help as he was going to run out of funds before his NDIS plan was reviewed. His carers, who were just trying to make sure he wouldn't be left without support, reduced the daily hours of care provided to him, to ration out his remaining money to ensure that he did not go without. This left him feeling very vulnerable, and he told me it even resulted in him sleeping in the chair one night as he did not have enough money in his plan for his carers to come back and move him into bed. That is simply not good enough. During this time, he contacted the NDIS seeking an urgent review of his plan and requesting the extra funds of his renewed plan so he could continue to have his care requirements met. It took the NDIS almost a month to respond to this urgent situation and provide him with a short-term extension of his plan for three months. Unfortunately, this kind of story is just too common—participants forced to wade through the NDIS bureaucracy while just trying to get a review of their plan and make sure that their care can be continued.

Another concern that's been raised with me is about the changes that are associated with moving the mobility allowance from the disability support pension to the NDIS plans. I have heard time and time again that the NDIS plans are not making up for the removal of the mobility allowance from the NDIS and, as a result, participants are having to dip into their own money to fund transport to appointments. One constituent contacted my office seeking help after finding that she was worse off when she moved onto the NDIS after being on the disability support pension. She thought that moving from the disability support pension to the NDIS would give her better support. But she found out that, when it came to transport costs, she was actually worse off. Her mobility allowance, or the money available as part of her DSP, was cut. She expected to see that funding put into her NDIS, but it didn't happen. The funding for her transport in her NDIS plan does not even come close to meeting her mobility allowance. She has relied on her mobility allowance to be able to afford transport to access her appointments and services. Without the mobility allowance and without an increase in her NDIS plan, she is being forced to dip into her own savings to fund her transport to critical services. This shouldn't be happening. People should not find themselves worse off because they have become an NDIS participant.

Another example is a constituent from Morphett Vale who called my office regarding his need for a particular piece of assistive technology. He initially called my office to enquire about the delays in getting the NDIA to process and approve his piece of equipment that he required. After months of my office working with him to raise this issue with the NDIA, he was told that this assistive technology that he required was not deemed to be reasonable and necessary. But, of course, he did need it; he needed it to actually participate fully in life. People with a disability are not a checkbox list to be ticked off. Many have complex and difficult requirements that can't be assessed by a one-size-fits all system. The NDIS should be a system that meets an individual's need, particularly when it comes to specific assistive technology.

There have been a lot of issues raised with me, as I said. My office has been constantly bombarded with issues. Another example was a mother caring for her child with a disability. She contacted my office, at her wit's end, after she'd been waiting months for the NDIA to review her change of circumstances. She was going into surgery and needed the NDIA to sort out her arrangements so she could organise care for her child. After my office intervened, we were able to get her a meeting and have her child's plan reviewed. But it shouldn't take my office intervening to get this to happen. How many others are falling through the cracks, unable to advocate for themselves and not knowing where to turn?

I also highlight Sean from Seaford, who is legally blind and whose application for a specific laptop was denied based on an administrative error on the NDIA's end. My office had to work with Sean for over two months to raise an internal review and have his application reassessed, even though it was completely the fault of the NDIA system.

Then there's Victor from Morphett Vale, who suffers from a permanent brain injury and was initially asked by the NDIA for up-to-date information from a neurologist. Victor couldn't understand what more recent information they would need, considering his condition is permanent and hasn't changed. This is also a story that happens too often. Sadly, even after Victor provided the required information, he was rejected, and again my office had to intervene and raise this internally with the NDIA.

You can see that there are many, many issues. There are many people that are not getting the care and support that they need and deserve from the NDIS system. We need a system that responds to people's needs. We need a system that delivers on the dream of what an NDIS can deliver. It requires the careful attention of this government, not the neglect and lack of interest I feel they show a lot of the time.

When it comes to this bill, of course we will make sure we are supporting important pieces of legislation that improve the system. But I do ask the government: it is time to make sure you are listening to people living with a disability and their families. You need to consider the issues in this bill around privacy that have been a focus. And, of course, you need to start making sure that people with a disability and their families do get to engage and get the supports that are necessary without having to regularly go to their member of parliament's office to try to get some support. It is just not good enough. I very much urge the government to take a careful approach to the NDIS to make it better—not to neglect it, not to rip money out of it and not to make inaction an excuse for the failure of this system.

Pat Conroy (Shortland, Australian Labor Party, Shadow Minister for International Development and the Pacific) Share this | Link to this | Hansard source

[by video link] I welcome the opportunity to make a contribution on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021. As many of the contributors have noted, this bill proposes changes that would implement recommendations (1), (6), (7), (8) and (9) of the Robertson review into the tragic death of Adelaide NDIS recipient Ann-Marie Smith. I want to begin by saying how dreadfully sorry I am, on behalf of the 150,000 constituents of Shortland, that Ann-Marie Smith went through what she did before her tragic and untimely death. The system failed her, and this bill is important because it's an attempt to repair the system, at least partially, to make sure that does not happen again. Labor is supporting the bill in the House and will move amendments in the Senate to clarify the basis upon which participant information can be shared and to require the minister to have a review of the bill to ensure stakeholders' future consultation on these important issues.

The National Disability Insurance Scheme is a proud Labor legacy and one of the key achievements of the Gillard government. History will recall that Julia Gillard was the Prime Minister who introduced this scheme to make clear to our fellow Australians with disability that whatever support they need to live fulfilling and dignified lives they will get. Imagine the lives of people with disability and their families and support networks at this current time of the pandemic if there were no Disability Insurance Scheme. Ten years ago there was no such scheme. In fact, I remember attending the launch of the Hunter pilot scheme with Prime Minister Kevin Rudd in the middle of 2013. It was a historic day for the Hunter as one of the pilot regions for the NDIS.

In talking on this bill, which the government maintains is about improving support for participants, I briefly want to go back to the creation of the scheme. The Productivity Commission reported the following to the Rudd government:

The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports and little scope to participate in the community.

This assessment was 10 years ago. It's disappointing that, for all the progress that has been made, my constituents with disability still have issues with choice, having decisions made for them rather than making their own decisions. There are also issues with certainty when there are annual plan reviews, not to mention the insidious independent assessments introduced by the Liberals and Nationals.

In speaking on the improving supports for at-risk participants bill, I want to draw to the attention of the House one of the biggest issues NDIS participants have dealt with over the past year—that is, the attempted introduction of independent assessments, which is a shameful indictment on the Morrison-Joyce government and clearly undermines the claims by this government of a bipartisan commitment to the NDIS. The truth is, through attempting to introduce independent assessments, they were trying to make life more difficult for people with disability. That's not an accusation I make lightly, but the fact is that independent assessments were to be the blunt instrument deployed by this cruel conservative government to cut funding to NDIS participants.

I have raised an example in the House before of the cruelty of these so-called independent assessments to my own constituents, and that's the case of a six-year-old whose grandmother contacted my office because his mother was too distressed to. This young boy's plan had been cut from $100,000 a year to just $8,000 a year. That's over a 90 per cent cut in funding to his plan. What did this mean for him in terms of practicalities? His core support had been reduced from 35 hours a week to just five—a gigantic cut. This boy has a rare genetic disorder. His mother is a single mother. The reason given by the independent assessor for this drastic reduction was that, now that he was at school, he didn't need the support. This overlooked the fact that he was at school last year and needed the support, and now all of a sudden he doesn't.

The question I ask the government is: who is best placed to assess a participant's needs? Is it their doctors, their allied health professionals, their carers and the people who know their disability the most, or is it some random from a private contractor that the government was going to pay $339 million to with the explicit intent of making cost savings? The answer to this, obviously, is those that know the participant best are best placed to determine their needs, not some so-called independent assessor with a clear incentive to cut costs in the scheme.

In fact, the only reason independent assessments have been shelved for the moment is that they were met with universal condemnation by NDIS participants, NDIS stakeholders and state and territory governments. I thank and acknowledge all those who've fought against these changes and succeeded in getting another U-turn from the Liberals and Nationals. The take-home lesson from this sordid independent assessment experiment is that the Liberals and Nationals will not hesitate to attack the foundations of the NDIS just to save money, and this is plainly wrong.

As another example, I regularly get families of kids with autism coming to me in tears because they've gone through a review of their plan and found that their plan has been massively cut, and the reason that the National Disability Insurance Agency has given for the cut is that clearly the plan is not working because the child with autism is not getting better; they are not recovering from the autism. As the families and every independent expert has made the case to me, you don't recover from autism; you learn to live with it and to fulfil your potential. That is just another example of this government's callous attacks on the NDIS and the participants in it.

I have also had cases where someone's NDIS plan was dramatically slashed when they finished high school and went onto university. The justification given by the agency was that they were going to be under a lot less stress at university than at high school. Well, I just don't see how they could have made that assessment. For many people university is as stressful as high school, if not more stressful. To cut someone's plan so callously because of such an arbitrary decision just further emphasises the real motivations of this government.

I'd also like to talk about the NDIS Quality and Safeguards Commission component of the bill. I want to draw to the attention of the House a situation one of my constituents is experiencing right now. This constituent is highly vulnerable. I won't go into her particular condition, but like most of the country my Shortland electorate is in lockdown, and an issue has arisen for my constituent regarding her support worker having access to help her during the lockdown. My parliamentary liaison has had to refer this issue my constituent is having with her provider to the commission.

The above complex situations demonstrate the urgent need for an effective cop on the beat. Labor believes that everything possible should be done to protect people with a disability from neglect and abuse. The commission has a fundamentally important role to play, and yet it is ineffective and understaffed. Unfortunately this bill does nothing to address the significant holes in NDIS safeguarding that are evident in this commission.

The truth is, as a pilot region for the NDIS, my electorate and the participants in my electorate have gone through many generations of plans. In fact, at one stage, I had the distinction of having more complaints issued before the NDIA than any other electorate in the country. More must be done to improve the system. More must be done to improve it for constituents in my electorate. It's all very well and proper for the government to brag about it being a demand-driven program, but every year billions of dollars are cut from the NDIS because this government has put in place systems and staffing cuts to choke demand. You can say it's demand driven, but if you choke demand, if you restrict demand, if you cut plans in a thoroughly unscientific way, you are cutting the NDIS and you're doing a great disservice to hundreds of thousands, if not millions, of Australians.

Ultimately the National Disability Insurance Scheme is a fundamental compact between the Australian society and Australians with a disability. It is a compact that says that we will not leave you behind; we will make sure that, no matter how your disability occurred, whether through birth, a freak accident or some other mechanism, we will allow you and support you to fulfil your true potential—not just to give you the most fulfilling life possible but so that your potential and your contribution to society is not lost. This government is destroying that fundamental principle with its cuts and attacks on the NDIS.

I will finish by noting that tonight is the opening ceremony of the Paralympic Games in Tokyo. We wish all our Australian Paralympians well. I'd like to give a special shout-out to my constituent Rheed McCracken and wish all of them all the very best of luck. One of Australia's most distinguished Paralympians is Hunter local Kurt Fearnley. He's also one of the most eloquent and effective advocates for the NDIS. He said the following about the cost of funding the NDIS:

People with disabilities' lives do not live and die around an election. We're here for good and if you want to make permanent gains, you've got to give permanent funding.

The government should heed the advice of Kurt regarding funding. They should also support the amendments that my colleagues will make in the other place to strengthen this bill. As I said, the National Disability Insurance Scheme is a contract that Australia as a prosperous first-world social democracy has with people with disability, and unfortunately for my constituents this potential is not being realised.

Sharon Claydon (Newcastle, Australian Labor Party) Share this | Link to this | Hansard source

I am very pleased to follow my colleague the member for Shortland in this debate on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021. I know time is going to be short this evening, but I absolutely concur with the sentiments that the member for Shortland just articulated. The National Disability Insurance Scheme is indeed one of the greatest social reforms this nation has ever seen. For the very first time, the NDIS gave people the chance to access the support that suited their individual needs and it provided choice and control in doing so. That's how it transformed lives.

I do want to acknowledge at the outset the extraordinary work of the former member for Jagajaga, a very dear friend and colleague, the Hon. Jenny Macklin, for her leadership role and the terrific team that she had around her to really make the National Disability Insurance Scheme a reality for this nation. Newcastle, along with the Hunter region, was one of the pilot cities for the NDIS rollout, so we have had a long history and a lot of experience of the implementation of the NDIS. I've had the pleasure, really, of seeing firsthand how the NDIS can fundamentally change lives for the better. I think that we should never, ever lose sight of that incredible joy, but we can't let our appreciation of the NDIS and all of the great things that it does distract us from the appalling job that this government has done in its implementation.

After years of Liberal government mismanagement, the Prime Minister promised to fix the failures of the National Disability Insurance Scheme at the last election. But, true to form, the Prime Minister has failed to honour that promise, leaving the NDIS in a shambles for many of its participants. The NDIS has gone backwards and people with a disability and their families are paying the price for that broken promise. It's unconscionable that people with disabilities have to fight for the basic things that they need in order to live a decent life. We know this from multiple reviews which have revealed a litany of cases where people have been left behind and neglected. Perhaps one of the most devastating examples was the death of Adelaide NDIS participant Ann-Marie Smith, a story that continues to sadden all Australians to this day.

Ann-Marie Smith was one of many lives lost in a series of NDIS related tragedies caused by eight long years of Liberal government cuts and privatisation. Labor was relieved when the Morrison government heeded our calls for an independent investigation into the death of Ann-Marie Smith but, unfortunately, the government refused to extend that inquiry to include a review of the tragic death of David Harris. Just as Ms Smith's family deserves to know the truth and to seek assurances that others will not fall victim to a failing in the system, so too do the loved ones of Mr Harris and the countless other victims of abuse and neglect.

As is so often the case with this government, they remain tone deaf and oblivious to all of those warnings. Whenever there is an emergency, we know that this government is very slow to react. Sadly, so many Australians have paid a high price for that inertia. I have been contacted by many people who have experienced this government's incompetence firsthand. By the time people reach out to me for support to help navigate their way around the NDIS, I know that they're already at their wits' end. In most government departments there's usually a pathway for elected representatives to escalate critical cases and to get a response within a few hours, or a day at the most. However, with the NDIS Novocastrians are being forced to wait weeks or, indeed, months for an answer or a resolution.

Eighteen-year-old Shelby from Jesmond is just one of those people. Shelby has a complex neurological disorder and uses a wheelchair. She is currently living in medium-term accommodation, pending a review to transfer to specialist disability accommodation funded by the NDIS. While the review is underway, the NDIS have not granted Shelby an extension for her medium-term accommodation; despite her complex needs, they told her that she has to apply for public housing. With hundreds of people on public housing waitlists in Newcastle, I fear that Shelby is at greater risk of being rendered homeless every day.

And then there are stories like Rodney Fisher's. Rodney was contacted by the NDIS in August last year and was informed that they would be reassessing his eligibility.

Debate interrupted.