A St Marys family has told a Senate inquiry into the National Disability Scheme how they believed their son died from its failures to address his high needs sooner.
Beverley Rubenach, her husband Peter and daughter Hannah Rubenach-Quinn attended a hearing in Melbourne on Thursday to tell committee members of the final months of their 32-year-old son Tim who died in May while waiting for supports from the scheme.
They said Tim, who had lived with an acquired brain injury and epilepsy since he was a child, had required access to a tiltable bed with mattress designed to prevent bed sores and a supportive, posture-controlling, all-terrain wheelchair which never came.
“Tim was a victim of the NDIS,” Mrs Rubenach said.
“Because of the complexity and severity of his disabilities, Tim was extremely high-need, extremely high-risk and extremely vulnerable."
She said her son was assessed by the NDIS has having urgent needs and approval for urgently required assisted technology.
“Tim died with no equipment supplied,” Mrs Rubenach said.
“Because of this, he suffered immense pain – physically, emotionally and mentally.
“The image of his suffering still breaks our heart, especially so today as it is the six-month anniversary of his death.”
Mrs Rubenach said the family was still paying off loans to buy supportive equipment after they were not able to get it with assistance from the scheme.
Mrs Rubenach-Quinn said the family had to fight endlessly over decades for adequate disability supports from the state government and the NDIS when he became eligible for the scheme January this year.
She said she believed Tim's death and suffering could have been prevented through supports which offered posture support, reduced the chances of his oesophagus ulcers from bleeding, and bed sores.
Mrs Rubenach said there were convoluted requirements from administrators of the scheme, delays caused by a failure for the scheme planner to pass on information to the service co-ordinator, failure to communicate with the family, and a failure to provide adequate funding for accessors to travel to the family in St Marys.
She said many of the requested services and supports were not included in her son’s initial plan which the family were not able to see before it was approved.