Mr Hobbs, 39, has Friedreich’s ataxia, a rare genetic nervous system disorder that is turning him blind and has confined him permanently to a wheelchair.

He also suffers serious heart problems and such severe sleep apnoea he stops breathing several times a night.

But – despite the severity of his illness – Mr Hobbs has still seen no sign of $40,000 in disability funding allotted to him in March last year.

“I’m one of only 10 per cent of sufferers who have visual impairment,” Mr Hobbs said.

“I will end up going blind. I can see lights and shapes but that’s pretty much it.

“My heart will also enlarge until it won’t fit into the cavity anymore.”

Mr Hobbs urgently needs extra funding to travel to his Monash Medical Centre Friedreich’s ataxia specialist after stricter patient transport regulations which mean he requires a specialised vehicle so he can be lifted in and out by his carer.

He is also on new medications after his body became too used to his old ones, his rent is regularly increased and there is now a need for overnight carers due to the severity of his sleep apnoea.

Mr Hobbs receives the Blind Disability Pension and has a Department of Human Services’ Individual Support Package, and his request to join the Disability Support Register last March

was also approved, allowing him to access the extra $40,000.

However, 17 months later the money still has not reached his bank account.

His carer, Miranda van Egmond, who owns Better Care Disabilities and Personal Care, said it seemed people like Wil often got overlooked in the system.

Grampians Advocacy executive officer Debbie Verdon said the delay was “unacceptable”.

“This is just more evidence of why the NDIS is needed. The system has pretty much broken down,” Ms Verdon said.

“The NDIS will be rolled out in 2016, but I don’t think Wil waiting until then is appropriate at all.

“There is an unmet need out there. For every Wil who is getting media attention, there are many, many

others who don’t get that exposure.

“It’s a systemic failure really. There’s a really big fix on the way, but in the meantime people are finding it harder to access what they need.”

Disabilities Services Minister Mary Wooldridge said the Department of Human Services was planning to meet with Mr Hobbs this week to discuss his application for funding and to gain an understanding of his changing needs.

fiona.henderson@fairfaxmedia.com.au