Ausnew Home Care | NDIS urged to review epilepsy support as Esperance man who suffers daily seizures fights for access

NDIS urged to review epilepsy support as Esperance man who suffers daily seizures fights for access

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Luke Oxley tears along the Esperance foreshore, relishing a rare moment of freedom.

His bright blue sneakers push hard against the pedals, possibly making some a little nervous — given he could collapse at any moment.

But the 20-year-old is determined to retain as much independence as possible. 

He has drug-resistant focal epilepsy and suffers about five seizures a day, ranging from about a second to a few minutes. 

When he first received the diagnosis as a child he initially saw it as a novelty, finally marking a difference between himself and his identical twin brother, Mick.

Back then it barely impacted his somewhat wild, carefree childhood spent racing around cattle stations from Leonora to Wiluna in Western Australia's Goldfields with cars and motorbikes.

But even though doctors believed the seizures would stop as he grew older they only got worse, and Mr Oxley's world started shrinking.

"All of a sudden [people started saying] 'oh no there's a risk. You can't be involved in this'," he said.

He wears a pineapple patterned shirt and stands near his letterbox
Luke Oxley suffers drug resistant focal epilepsy. (ABC Esperance: Emily Smith)

The seizures leave him physically and mentally exhausted, and he can be confused and disorientated for hours afterwards, making him prone to impulse buying and scams.

"When we were in Perth he went to two opticians and bought three pairs of glasses and he had no idea," his mother, Mieke Weelink, recalled.

"I rung the shops and he'd been there and ordered them and paid for them."

Mr Oxley said these events always came as a shock.

"It's very daunting to realise there's a massive chunk of your life gone [that you don't remember]," he said.

He is not allowed to drive, has so far been unable to pursue his dream of becoming a mechanic, and struggles to find an employer willing to take him on.

Despite his upbeat demeanour and cheerful attire — usually wearing one of his 27 tropical shirts — he feels stuck in limbo, living in the WA south coast town with his mother while his brother and many of his friends have long gone to study, travel, and live more independently.

"I feel quite left behind compared to my peers," he said.

Yet the National Disability Insurance Scheme (NDIS) has rejected his every appeal for help.

The pair have their arms around each other and stand knee-deep in turquoise water wearing goggles
Luke Oxley and his twin brother Mick lived on cattle stations before moving to Esperance.(Supplied: Mieke Weelink)

Call for NDIS to launch epilepsy review

Mr Oxley and his mother believe having a support worker, who could attend a job with him and help if he has a seizure, would drastically improve his life as it could make employers feel more comfortable about hiring him.

They also suggest an epilepsy support dog could help to provide comfort and protection. 

But three applications and subsequent appeals to the NDIS — which all cost a lot of time and money — have been rejected.

In its rejection letters, the NDIS stated that because Mr Oxley had not tried every treatment available his impairment was not deemed permanent and it therefore could not support him.

Yet, a letter from a neurologist, which the NDIS has seen, stated the chance of additional medication stopping Mr Oxley's seizures was near zero.

Ms Weelink also points out he has tried about 15 medications already which have failed to stop the seizures, and they all bring side effects.

"[The NDIS refuse him] even though the neurologist has said in several letters, and the GP, that it is very unlikely that he will grow out of it and it's likely it's going to be long term," she said.

Two identical looking toddlers look at the camera
When Luke and Mick Oxley were little, people struggled to tell them apart.(Supplied: Mieke Weelink)

A statement at the end of each NDIS rejection letter urged her to contact the local area coordinator for support — a position that does not exist in Esperance, although a local contact officer was appointed in January.

Ms Weelink said NDIS coordinators from other areas told her they were unable to help people in Esperance.

A National Disability Insurance Agency (NDIA) spokesperson said "NDIS decisions, including whether someone with disability meets access, are made in accordance with the NDIS Act and based on all available evidence at the time".

But Emma Buitendag, the CEO of Epilepsy WA, said the NDIA needed to review its access requirements for people with epilepsy.

She said many people with epilepsy struggle to access the support scheme, particularly if it was their primary condition.

"We hear stories all the time where people are profoundly impacted by their epilepsy," she said.

"Yet the NDIS denies their every application."

A person sits on the ground, another on a fence, another leans against the fence
Luke Oxley grew up on stations in Western Australia's Goldfields.(Supplied: Mieke Weelink)

'He is still so positive'

Ms Weelink, who often has to rush from work to help Mr Oxley and panics every time her phone goes flat that he may need her, said it is hard to see the devastating impact the condition has had on his life, particularly when compared to his identical twin brother.

"I always say I have one child thriving and one child surviving, even though they're identical twins," she said.

Mick Oxley said it was difficult to see his brother face so many setbacks.

"They just don't seem to understand how much he needs this [NDIS support] to follow his passions and pursue a life he wants," he said.

Ms Weelink considered moving to Perth, where she believed support services and help with the NDIS would be easier to access, but decided against it, as living in a small community was good for Mr Oxley.

They have their arms around each other, both wear bright shirts, he holds a cup
Luke Oxley and his mother Mieke Weelink live together in Esperance. (ABC Esperance: Emily Smith)

Only a few weeks ago, community members helped him twice on one day, carrying him to the shade and contacting family members after separate seizures.

Mr Oxley was filled with gratitude and took to social media to offer his thanks.

"In the city if that happened people would think 'oh he's on drugs, he's drunk or something', and would just leave me," he said.

He also volunteers as an instructor with the Navy Cadets and the local theatre group, where he has built up the courage to aim for a role on stage this year.

Ms Weelink is buoyed by her son's persistence.

"He gets knocked back so many times and he keeps going," she said.

"Despite all of his setbacks he is still so positive and it's amazing, and it's commendable."

They plan to lodge a fourth application to the NDIS shortly.

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