Louise Pratt (WA, Australian Labor Party, Shadow Assistant Minister for Manufacturing) Share this | Hansard source

I also rise to take note of answers given by Senator Ruston on the NDIS. As we know from the debate in this place this afternoon, Liam Danher died of a seizure due to a lack of a seizure mat that would have alerted his parents to the fact that he was having a seizure so that they could intervene, as they had done in many instances in the past when he had had previous seizures. I want to place on record today my personal condolences to Liam's parents. Kevin and Tracy, I want to thank you in particular for your advocacy around this issue. At a time of grief and anger, you have been able to turn this into advocacy so that other people, I hope, do not have to suffer these injustices and traumas through the NDIS. For that I am deeply grateful.

I am also very concerned by this government's continuing use of so-called respect for privacy as a cover-all for every instance where people want to take their issues up in parliament and have their parliamentarians raise them. Time after time, this government simply hides out of respect for privacy or respect for the people concerned. The simple fact is that the parents of Liam want to be able to highlight how the system has failed their son. We know, as we dig deeper into the issue, that there might be deeper reasons as to why the government might want to gloss over these issues. The National Disability Insurance Agency's Martin Hoffman said at estimates that Liam's death was 'a complicated and terrible situation'. What is that designed to mask over?

We know that this young man died for want of a seizure mat that would have alerted his parents so that they could have rolled him into the correct position during a seizure so that he would not have needlessly suffocated. What we also know about this indeed complicated case is that the NDIA was fighting Liam's parents with regard to other elements of his care. In the past, under the previous system, they had been his primary carers and they had been paid as carers under that previous scheme. I would hate to think that a bureaucratic debate over the care arrangements and who under the scheme should be caring for Liam—I would have hoped that the scheme could adequately recognise that Liam was best cared for by his parents, as was evidently the case but for want of this mat—wasn't the issue being complicated in amongst this request for a simple mat. It had been advocated for and requested by a number of other specialists and professionals that had sought for Liam to have access to that mat so that his parents could be alerted during a seizure.

We know one of the key failings in the current assessment scheme and one of the concerns with this bureaucratic recasting of how disability is assessed is the fact that people's needs change. Their disabilities change. Liam's parents were evidently concerned that their son might be having more seizures. How were they supposed to find that out if these seizures happened at night when everyone was asleep? They were debating with the NDIA: 'How many seizures is he having? Do we really know? Do we really think he needs this mat?'

These are evidently very difficult issues, but they are also simple issues. We need a system that can respond to individual needs, as the NDIA is supposed to. We don't want to get bogged down by bureaucracy and legal fees when it comes to meeting the immediate and, as evidenced in this case, urgent needs of participants in the scheme.

Question agreed to.