A man with a rare degenerative condition that resulted in half his brain being surgically removed was told by Australia's disability agency his funding had been slashed because "patients get better".
Ruth Den Brinker, the mother and full-time carer of a 44-year-old man with disabilities, presented her submission to a Senate committee examining the National Disability Insurance Agency (NDIA) on Thursday.
Her son, Jason, has been accessing the National Disability Insurance Scheme (NDIS) since 2018 for support for multiple disabilities, including Rasmussen's disease, uncontrolled epilepsy, obesity, intellectual disability and arthritis.
In April 2021, his funding plan, which supported him to live independently, manage his epilepsy and engage in social community activities, was cut by 20 per cent.
Meanwhile, Jason's support needs were unchanged.
An NDIS lawyer told her in 2021 that Jason's funding was reduced because "participants get better", Mrs Den Brinker told the committee.
"Miracles would be wonderful but in the interim we would appreciate a decent NDIS plan which will enhance Jason's quality of life," she said.
"Those thoughtless comments only exacerbate the decades of hurt already experienced by parents having to watch a formerly healthy child become severely and permanently disabled."
Mrs Den Brinker said the family had to endure insulting statements from multiple NDIS assessors who neither she nor Jason had ever met, including one who asked: "What is the difference between physiotherapy and hydrotherapy?"
The family has been fighting for a return to Jason's original funding at an appeals tribunal, however, they've had to pay for legal representation out of pocket, as well as risk Jason's services being cut off in the process.
"These delays cause service interruptions or no service or therapy provision for Jason for weeks, which impacted his health and well-being," Mrs Den Brinker said.
The family's lawyer told the committee the appeals tribunal ultimately accepted "the supports were reasonable and necessary and should not have been removed".
However, the tribunal said Jason hadn't satisfactorily proved he needed it to change back to the original amount.
As the family made their submission on Thursday, they said they were still fighting to get adequate NDIS funding for Jason.
Both parents are now in their 80s.
"It has been nearly five years of trying to establish a workable plan to meet the needs of someone with permanent severe irreversible disabilities and an unknown life expectancy," Mrs Den Brinker said.
"The process is traumatic and drawn out."
