Beverley Rubenach has had a flood of support after telling Tim’s story on the ABC. (ABC News: Laura Beavis)
The family of a Tasmanian man who died while waiting for a bed through the National Disability Scheme believes his death was hastened by the delay in the delivery of vital medical equipment.
Tim Rubenach died just over a week ago from pneumonia.
The 32-year-old contracted bacterial meningitis as a baby and suffered from severe epilepsy.
His mother, Beverley Rubenach, said a tilt bed was approved by the NDIS for her son in February but its delivery was delayed for months.
“They decided to deliver the bed last Friday but the trouble is we buried our son on Saturday,” she told ABC Hobart.
She said her son suffered from bleeding stomach ulcers and a tilting bed was urgently needed.
“I believe it certainly hastened his death because the bed sores were horrific and because he was just waiting and waiting for the bed,” she said.
Ms Rubenach said in the end, the Launceston General Hospital provided a specialised bed for her son.
“We brought the bed and we put it in the lounge room and sat beside him 24/7 and held his hand because he was in extreme pain,” she said.
Beverley and Peter Rubenach have sworn to continue their fight over their son Tim’s treatment to help other NDIS patients. (ABC News: Laura Beavis)
NDIS described as ‘form of abuse’
Ms Rubenach said her family had suffered an extreme failing and gross neglect by the NDIS.
“I believe the NDIS, the National Disability Scheme, is one of the biggest forms of abuse that’s happening at the moment,” she said.
Tim Rubenach’s family says he died waiting for a specialist tilt bed. (Supplied: Hannah Rubenach-Quinn)
She said her son was eligible for a motorised wheelchair in February this year but it never arrived.
“We’d take him out when we could in his wheelchair, his old wheelchair, and he would look down the road to see if a vehicle had come delivering his new wheelchair so he could go to the beach,” he said.
“The 9th of May was his birthday and he was still able, if he had the wheelchair, we could have taken him to the beach one final time, but it didn’t come.”
She believes money is being spent on NDIS administration but not on the people who need it.
“They are holding onto money, they are holding onto the funding and we’re not the only ones. There are hundreds out there with the same story to tell,” she said.
Family calls for inquiry
Ms Rubenach said Tim should have been a beneficiary of the NDIS, but instead was a victim.
“We’re going to fight, we promised Tim on his dying bed that our family will fight and fight and fight … for the rights of people to get what is rightfully theirs,” she said.
Independent member for Denison, Andrew Wilkie, also promised to take up the cause of the Rubenachs.
“This is a heartbreaking example of the extreme situation which is all too common with the NDIS,” Mr Wilkie said.
Mr Wilkie has written to the Assistant Minister for Disability Services, Jane Prentice, calling for an inquiry.
He said his office has been contacted by numerous people eligible for support under the NDIS.
But he said “they are suffering at the hands of extensive delays or bureaucratic brick walls”.
The NDIS and Ms Prentice were contacted for comment