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A 17-year-old student is leading the charge to get clearer guidance on access to support funding for those in the disability community.

Felix Shaw, who was born with a rare condition called cat’s eye syndrome which causes deafness, has relied on hearing aids since he was 3-months-old.

His hearing aids are powered by batteries which are now fully funded, but accessing the money hasn’t been easy.

“There was a lot of back-and-forth discussions and it was also a lot of fighting,” Felix said. “It’s a very difficult, complex system.”

People like Felix are eligible to receive fully-funded hearing aid batteries.

But access to that money becomes far more difficult after the age of 18.

Green Bay High School student Felix Shaw is advocating for disability support.

Felix was under the impression he’d have to pay for them himself and started a petition earlier this year to address the issue before he secured his funding through the Taikura Trust.

The trust acts as the middleman to provide what’s called a Needs Assessment and Service Co-ordination (NASC) for people with disabilities on behalf of the Ministry of Social Development.

A needs assessment must be done and a request for individualised funding with supportive evidence has to be put forward before a budget can be approved and routed through a ministry agent.

“We had to explain things like why I needed it funded and I don’t think it’s fair and I don’t think you should have to fight so much for basic support needs,” Felix said.

His dad Andy believed the public would be shocked.

“On the face of it, the Government says, ‘we’ve got millions of dollars for funding for disability,’ but actually a whole lot of it can’t get used because it’s too complicated to access,” Andy added.

Green Bay High School student Felix Shaw is advocating for disability support.

Individual disability advocate Jane Carrigan, who helped Felix through the funding process, described the system as “spectacularly complicated”.

“It seems the clear intention is to make it so difficult for people that they back off,” Carrigan said.

“He should be funded for the batteries. The law says he should be funded for the batteries. But I’ve long learned that the Ministry of Disabled People and Disability Support Services pay very little interest to the law.”

And it is not just funding for batteries, it is also left Felix’s parents wondering about other support they were denied when he was young.

“We asked for certain things and we were just told no,” Andy said. “Now we look back and think if we had known what to ask, we could’ve got it.”

Felix has since created a step-by-step guide to help others access funding and hopes to have it more widely distributed.

MSD says it is currently reviewing funding for hearing aids, including the costs of batteries and plans to get in touch with Felix to talk about his ideas.