Ian Haywood has spoken to The Guardian about the funding decision, which may leave him without 24-hour nursing care, a service that has allowed him to stay living at home until now.
After his latest funding review, Haywood, who is 43 and living with the terminal illness motor neurone disease, will now only be funded to receive six hours of nursing care per day.
Haywood told The Guardian he requires around-the-clock care because he cannot breathe on his own. He is mechanically ventilated and needs urgent help if something goes wrong.
“Usually it’s something simple like a leaking valve … a nurse with ICU experience can identify the problem and resolve it,” Haywood said.
Haywood’s partner Sarah* told The Guardian the National Disability Insurance Agency determined it was not “reasonable and necessary” for Haywood to have 24-hour nursing care.
“We think it is reasonable for him to stay home and it is necessary in order for him to live,” she said.
“It’s cheaper for them if he dies,” she said.
Haywood’s current level of funding will end in January, putting him in limbo until a review of the cut is resolved.
Before he developed motor neurone disease, Haywood was a psychiatrist.
“Now I can’t move very much at all,” he told The Guardian.
“I can wiggle my wrists, I can turn my head slightly, and I can blink and move my eyes. Some additional movements are still present but not under my voluntary control: for example, I will smile if told a joke,” he said.
He uses a button under his wrist to operate a computer, which allows him to use the internet, and he watches films and reads books. He maintains an involvement in the Voices of Mornington Peninsula political group.
“A large part of that is the nursing staff look after him really well.”
An NDIS spokesperson told The Guardian that the NDIS “continues to provide a significant level of funding for Mr Haywood’s disability-related supports, including 24/7 support”.
They said the support can be delivered by a disability support worker after a “transition” during which the nurse will provide training and support.
Haywood and Sarah told The Guardian they had not been told about the transition.
Last week in parliament, the government was asked about several cases where disability funding recipients and their families had appealed large funding cuts.
Last week, a Perth mother revealed she may have to quit her job to care for her autistic son after his NDIS package was cut by about 70%.
Last month, the mother of a terminally ill five-year-old battling a degenerative neurological disease told Nine News her child’s NDIS package had been halved.
The parents of a 20-year-old with multiple complex disabilities said their son would not get the 24-hour care he needs after changes to his plan.
In another case, the ABC reported that a 21-year-old living with autism and tuberous sclerosis had their cut reduced by $112,000.
The Guardian has reported there has been a 20% increase in the number of NDIS funding decision appeals, which are conducted through the administrative appeals tribunal, over the past 12 months.
Disability advocates have also told The Guardian they are being contacted regularly by recipients wanting help appealing funding decreases.
The opposition has branded the NDIS funding cuts as “stealth cuts”.
Independent MP Zali Steggall is also calling for an end to the age discrimination written into NDIS legislation, which means that disability funding is denied to those over the age of 65.
*Not her real name.