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.