Amanda Rishworth (Kingston, Australian Labor Party, Shadow Minister for Early Childhood Education) Share 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.

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