My NDIS nightmare
“There was no notice period. It was basically just a case of ‘bugger off’.”
A LARA man who struggles to walk due to his chronic pain condition has had NDIS support pulled from him without warning.
Peter Lilley, who suffers from complex regional pain syndrome (CPRS), says he feels degraded and powerless after his status as an NDIS participant was cancelled last month.
The revocation came after Mr Lilley complained about a long delay in receiving $30,000 worth of home modifications he said was budgeted for him.
In a letter from the National Disability Insurance Agency on September 26, the former construction worker was informed his NDIS support would stop immediately, after the agency ruled his condition could not be defined as a disability under existing legislation.
“There was no notice period. It was basically just a case of ‘bugger off’,” Mr Lilley said.
The father of four — who had been an NDIS participant since January 2017 — was diagnosed with CPRS in 2013 and has not worked since.
He said although the condition was considered treatable, a range of operations had failed to help, leaving him heavily reliant on crutches, a wheelchair and mobility scooter to get around.
The cancellation of his NDIS plan means he now has to pay out of his own pocket for taxis — something that was previously subsidised.
Physiotherapy and regular home maintenance are also now off the table.
“My wife works full-time in Melbourne. Because I can’t work, we need her to do that, otherwise we wouldn’t have money to live,” Mr Lilley said.
“I do what I can, which is very little, but there’s no way I can do what needs doing.
“So it just makes life harder on my wife. When she gets home, she has to start work again.”
Mr Lilley said he also remained frustrated by the lack of modification works to his shower, despite it being listed on his NDIS plan more than 18 months ago.
He said the process had been an “absolute nightmare” and that he struggled to sleep.
“Part of the NDIS has been OK with all the Home Help and other stuff, but the communication side of things is horrendous,” Mr Lilley said.
“The amount of stress that I’ve been put through with all of this has been ridiculous.
“It’s degrading. You feel like you have to beg. And even when you beg, you still don’t get anywhere.”
The NDIA said its privacy obligations meant that it was unable to disclose or discuss information relating to individuals.
“To remain eligible for the NDIS, a person must continue to meet the either the disability or early intervention requirements, as well as the residence and citizenship requirements.
“Individuals may be required to provide evidence of the functional impact of their disability to continue to meet the eligibility requirements for access to the scheme.”
Geelong disability advocate Jacqui Pierce has recently written to the NDIA seeking an urgent review of its decision. Ms Pierce said Mr Lilley’s experience could be the “tip of the iceberg”, predicting the agency may take a similar approach to other people with a disability.
“The NDIS is an absolutely brilliant idea, (but) the implementation is still pretty bumpy and pretty clunky,” she said. “I think there were some people who initially went into the scheme that may not in fact be eligible the way the legislation has been written.
“If that is the case, we have to implement the process to revoke someone’s status in a way that is a whole lot better than what Peter has experienced.
“For him to get a phone call and an email on the same day revoking his status immediately — with no transition time and no information on where else he can get his services and supports from — is not acceptable.”