The head of the National Disability Insurance Agency has apologised to the family of a Tasmanian man who died while waiting for vital medical equipment, a case that has exposed multiple failings of the scheme.

The disturbing case of Tim Rubenach prompted an excoriation of the NDIA in Senate estimates on Friday morning.

Rubenach had severe epilepsy and was approved for the national disability insurance scheme earlier this year, the Senate heard.

His plan included funding for a tilt bed, but the bed never arrived.

His mother, Beverley Rubenach, told the ABC a tilt bed had been approved by the NDIS for her son in February but its delivery was delayed for months. The Rubenach family said Tim suffered from bleeding stomach ulcers, making the bed an urgent need. They were eventually forced to borrow a tilt bed from the local hospital, the Senate hearing heard.

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Rubenach died a week ago. The bed still had not arrived at the time of his death. Months earlier, on 8 March, his family had written to the NDIA and the disability services minister.

The letter, seen by Guardian Australia, is a desperate cry for help. The family described the immense suffering caused by the NDIS decision to fund only 70 hours of care a week, rather than the 24-hour care he needed. The parents, both in their 70s, were caring for Tim but said they were struggling to manage.

“Without care 24 hours a day, during the daytime: Tim will have to be seated (fully restrained) in his wheelchair most of the day being unfed, dehydrated, screaming in pain, wallowing in urine and faeces, getting cold/hot, becoming highly distressed and fearful with no one to comfort him,” the family wrote.

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“This is preventable cruelty at its worst. Who will take the responsibility for the pain and suffering and death of a young man eligible to receive reasonable and necessary care from the NDIS and yet has been let down by the extreme failings of the system?”

The case prompted a damning indictment of the NDIA from the Greens disability spokesman, Jordon Steele-John, in Senate estimates on Friday.

“Speaking very frankly, they would not give a shit whether anybody in this room is particularly sorry about the death of their son,” Steele-John said. “They would want to know that the agency owns the failure that is represented in the death of their son, as does the government who currently presides over it.

“Disabled folk in this country have been dying at the hands of poorly delivered services for hundreds of years. It’s nothing new.

“The point of the NDIS was this was not to happen anymore. The fact that it has occurred to a participant of this scheme is a failure of this government and this scheme.”

The NDIA chief executive, Robert De Luca, apologised to the family for their loss. He conceded that the delivery of assistive technology to people with a disability was too slow and must be improved.

The NDIA plays an important but somewhat limited role in supplying assistive technology. It approves funding for such technology through support plans, but the technology itself is provided by third party suppliers. The NDIA and related local area coordinators - or in more complex cases, support coordinators - help participants work with with the suppliers and ensure the supports approved in the plans are being delivered.

“The overall system process between the agency in getting quotes and getting quotes approved and then basically for providers and support coordinators to deliver the services and supports to participants needs to be improved significantly,” De Luca said.



The Labor senator Murray Watt asked, “So it is too slow, currently?

De Luca: “Yes.”

Deputy NDIA chief executive Vicki Rundle said the agency had been working closely with the family. She said she was “very sorry that that family had that experience”.

“We’ve been working really closely with the family, the family had a plan approved in March for the person in question,” she said. “The assistive technology was ordered and was being awaited. Unfortunately the participant was gravely ill and the piece of assistive technology wasn’t able to arrive in time.”



The NDIA was also grilled over changes mistakenly uploaded to its website that drastically changed the autism eligibility requirements for the scheme.

The erroneously published guidelines, first reported by Guardian Australia, would have cut direct eligibility for a huge group of children with autism.

The NDIA claimed the changes were uploaded accidentally, but the Australian later reported it was part of a deliberate strategy to tighten eligibility.

On Friday, De Luca was unable to rule out making such a change in the future. Other NDIA officials said there was no intention to restrict eligibility for autism but acknowledged there were programs to make accessing the scheme fairer and more consistent.