Daily existence ‘compromised’ for Sydney teen in need of leg braces

A teenager with a degenerative neurological disease is unable to get a new pair of AFO leg braces he needs to walk under NDIS. His father says his daily existence is “compromised”.

While people are spending NDIS funding on extravagant holidays and hair extensions, a teenager with a degenerative neurological disease has been blocked from getting the leg supports that stop him from falling over almost every single day.

The revelations of outrageous spending including $73,000 on a new car, $3600 on hair extensions, $1200 on theme park tickets or $11,000 on a US holiday certainly didn’t pass the pub test for James Lilley.

“Our 15-year-old son can’t walk without AFO leg braces which cost about $12,500 per pair,” Mr Lilley told the Sunday Telegraph.

Fifteen-year-old NDIS participant Hamish Lilley is unable to get new leg supports, which cost upwards of $12,500. Picture: Richard Walker

“He has been wearing leg braces for over 10 years, and NDIS has funded them for at least five years until last year.

“Since December last year the NDIS stopped paying for them with no notice. We have contacted NDIS, NDIA and various relevant ombudsmen on at least 20 occasions since then with no indication verbally or in writing about why they have stopped funding.”

Mr Lilley said Hamish was desperately in need of replacement AFOs as he is falling over daily. Several of these falls have required hospitalisation.

“His very daily existence is compromised because of NDIS discriminatory approach in the last year under Bill Shortens clamp down.”

Hamish, who is in Year 9 at school, says the braces assist him with stability when he is walking and keep him upright.

Hamish Lilley says the leg braces help him with walking and staying upright. Picture: Richard Walker

“They also allow me to have a bit more spring in my step, so I can propel myself a lot better,” he said.

“I have lots of falls, almost daily and then I have injuries, mainly things like knees and hips.

“But that very instant between the part of falling and hitting ground I can’t even hear or feel or see anything. It’s like I black out, it’s the most horrible thing in the world.”

“When it does happen, fortunately I have support from my friends doesn't take away the emotional pain of feeling ‘am I ever gonna get through’ and then the physical pain.”

This week the NDIS told Mr Lilley someone was looking into the case and he would have an answer in 21 days.

Hamish Lilley has had several falls which have resulted in hospitalisations. Picture: Richard Walker

NDIS Minister Bill Shorten has announced a public consultation period on what constitutes NDIS support.

Mr Shorten said he wants to send a “clear message with clear definitions of what’s acceptable and what’s not”.

In July Mr Shorten expressed anger over the Greens and the Coalition teaming up to send the NDIS Act reforms back to committee until August for a Senate vote.

He said the delay would cost Australian taxpayers almost $1 million an hour.

Anyone wishing to provide feedback can do so at the same location: engage.dss.gov.au

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