Kimberley Kitching (Victoria, Australian Labor Party, Deputy Manager of Opposition Business in the Senate) Share this | Hansard source

I move:

That the Senate take note of the answer given by the Minister for the National Disability Insurance Scheme (Senator Reynolds) to a question without notice asked by Senator Kitching today relating to the death of Mr Liam Danher and the National Disability Insurance Scheme.

Firstly, I'd like to say thank God we've got Minister Reynolds, because the former minister, Stuart Robert, the member for Fadden, had about as much compassion as a typical member of the Gold Coast white shoe brigade and should never have been in this portfolio.

Let's talk about Liam Danher. On 5 February this year Liam Danher, a 23-year-old man with a severe intellectual disability, autism and epilepsy, died of a seizure in his sleep while his parents were sleeping in the next room. Stop and imagine that for a moment: your beloved son, 23 years old, sleeping in the room next door, dies overnight. Why did he die? Because the National Disability Insurance Agency had given him the run-around for 18 months at the AAT and would not buy him a seizure mat, which would have indicated, by giving an alarm, when Liam Danher was suffering a fit. Liam's parents have said that their son's death could have been avoided if he had been provided with this seizure mat. This Cairns couple said that for two years they felt increasingly cut out of the care of their son as he moved from a state run service to the National Disability Insurance Scheme. Last July, with the Danhers increasingly worried their son might be having rare night-time seizures, his neurologist recommended purchase of the $445 mat which would detect a seizure and sound an alarm. The seizure mat was recommended by three of Liam's own treating professionals, including a neurologist, as well as his independent assessor and the agency itself—the same agency used to try to deny his appeal at the AAT.

Over the course of the 18-month appeal, the NDIA should have amended Liam's plan to include assistive technology funding so he could access the life-saving seizure mat. That's the point: it would have been life saving; it would have saved his life. This was an entirely avoidable death. What did the NDIA do instead of purchasing a $445 seizure mat? They used taxpayers' money to engage lawyers and barristers to assist in the trial, which went for 18 months, while Liam was unable to access legal aid, and the NDIA—wait for this—stopped his parents from representing him. It is disgraceful. The NDIA also flew an independent assessor to the family in Cairns to assess Liam as part of the AAT process. As if the trauma of losing a child to a preventable cause were not enough, the NDIA then contacted the family support coordinator, a week after Liam's death, requesting quotes for the seizure mat. You can imagine how upset the family was. Liam's mum, Tracy Danher, in her letter, which I'll seek to table, has said: 'It was just so distressing to receive that email. We had been waiting every day for that mat to be delivered.'

Pause for a moment and imagine that, just for a minute. How do the people at the NDIA sleep at night? I think that would be beyond most people's ken. To add insult to injury, the NDIA has still not contacted the family to offer an apology or even an acknowledgement of their son's passing, a fact which obviously Liam's parents find upsetting and cold. The minister has said in this chamber that she has apologised, but it seems unclear as to whether she was doing that in the chamber or had apologised when she had contact with Liam's father. I do hope those responsible at the NDIA and the minister are able to accept that a grave injustice has been perpetrated here and then find it within themselves to apologise to that grieving family in person—not only in the chamber but to the family—for the loss of that family's son due to an entirely avoidable bureaucratic nightmare.

Liam is of course the fourth NDIS participant who has recently died due to NDIS neglect and delay. I'm going to run through the other deaths quickly. Tim Rubenach died waiting for the NDIS to provide him with a safe wheelchair. Ann Marie Smith, who suffered septic shock, multiple organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy, died sitting in her own faeces. David Harris died after his mental health supports were cut off by the NDIA. He was found dead in his Parramatta unit two months later by the police. I would ask the minister: what have the NDIA, the NDIS and the Quality and Safeguards Commission done? (Time expired)