Liam had a severe intellectual disability, was autistic and had epilepsy. Following an independent assessment by his neurologist last July, it was recommended that Liam receive a seizure mat so that his carers and family knew when he was having a life-threatening seizure at night.
But tragically, the mat never arrived, and six months later, Liam died.
Approval too late
The Danhers told the ABC their application for the mat was knocked back and they were asked to supply further documentation to justify the cost of the $2,500 mat.
Tragically, approval to purchase the mat came a week after Liam died, when the family was told the NDIS was seeking “urgent” quotes for the equipment.
“It was just so distressing to receive that email, we had been waiting every day for that mat to be delivered,” the family told The Australian.
“A devastating effect”
“Liam’s death has had a devastating effect on our family as a whole,” the family wrote to Minister Reynolds.
“Tracey’s heart is truly broken and will never mend.”
At a Senate Estimates hearing in Canberra this week, Minister Reynolds said she was deeply saddened by Liam’s death.
“I cannot imagine the grief that they are going through,” she said, as reported by 7News.
Minister Reynolds said she will write back to the Danher family and answer their questions, and she would be very happy to meet with them.
More spent on lawyers that the mat, Opposition claims
In a tweet this week, Labor’s Shadow Minister for the NDIS, Bill Shorten, said the Morrison government spent more money on lawyers to stop Liam getting the seizure mat than the cost of the mat itself.
“Instead, the NDIA used taxpayer funds to engage private lawyers and barristers to assist in the 18-month long Administrative Appeals Tribunal process.
“Minister Reynolds and NDIA boss Martin Hoffman must also explain why the NDIA contacted the Danher family after their son’s death for more information about the mat, even though Liam had died and the family had alerted the NDIS of his death.
“The Danher family’s tragic experience is another example of the bureaucratic nightmare the Liberals have created to stop people accessing the NDIS.
“Instead of finessing, investing and improving the scheme, Minister Reynolds wants to cut, cut, cut.”
“The Morrison government has already admitted it intends to use razor gangs to cut and slow access to the scheme,” Shorten concluded.
NDIA CEO Martin Hoffman told Senate Estimates Liam’s death was a “complicated and terrible situation”. An internal NDIA review is underway.
A series of NDIS scandals
Liam’s death is the latest is a series of tragic events linked to the NDIS, including the death of Ann Marie Smith from severe neglect last year, and the death of David Harris, who had acute schizophrenia, but was removed from the NDIS last year only to die two months later in his apartment alone.
In the wake of these scandals, the federal government is under fire for attempts to rein in the surging costs of the NDIS.
This is just a disgrace. My thoughts are with Liam’s family and friends.
The 3 deaths mentioned in this article should never have happened; the are a blight on the purpose of the NDIS.
When a Neurologist had recommended the seizure mat (a professional at dealing with those who suffer epilepsy)_makes a recommendation, how dare the NDIA ask for further proof it was needed, particularly after Liam’s death, it is only natural his family suffered further distress; where does the lack of emotion ( by the NDIA) stop?
The NDIS MUST remain independent of Government slash and cut gang.
Independent Assessments WILL NOT work, only creating more stress to NDIS recipients, causing further distress, and in some cases self harm due to anxiety.
I had a conversation with a member of The Prime Minister’s office late last year, after having written to the PM to express our frustration on the time frame it was taking for approvals, even once approved, to be able to access, drawn down funds and supply needed equipment via the NDIS. I was assured over the phone that this year (2021) things were going to get better….and now this!!. I have also written several letters to the Minister for Health ( Mr Hunt) with no reply.
This is absolutely heart breaking when we see first hand people dying like wounded animals when assistance is right there in our grasp all because bureaucrats want to save a dollar. When did it become the NDIS job to try and negotiate a “Better Price”. at the expense of lives.
SHAME on you, that includes Australians who voted them in.
When your carers don’t care, SACK EM!