NDIA ignorance a ‘body blow’ for people with uncontrollable epilepsy
The NDIA’s approach to epilepsy signals a ‘fundamental ignorance of what is actually a very common, and cruel, condition’, says Epilepsy Queensland CEO Chris Dougherty.
“Despite around 30% of people living with epilepsy having a form of the condition that cannot be controlled by current treatment regimes, there’s a gaping hole when it comes to supports – not least under the National Disability Insurance Scheme.
“Epilepsy is hugely complex – 70 different seizure types, 40 different syndromes. There’s no expectation that the NDIA become subject matter experts, but they do have to start listening and looking at the evidence. It only takes one conversation with a person or family affected to understand that an NDIS package isn’t about bells and whistles, it’s a matter of survival.”
Arguing that access to the Scheme, on the basis of an epilepsy diagnosis alone, is “almost impossible”, Chris said that it’s not only a quality-of-life issue, it’s a huge safety concern.
“There’s a perception that epilepsy is episodic in nature, with no recognition that the impact of seizures can be profound and extend into every area of someone’s life. This condition can, and does, take lives apart.
“People need flexible supports that can assist with everything from falls management, mobility and cognitive impairment, to household management and psychosocial needs. Epilepsy also severely impacts on social engagement, so it’s imperative that we deliver the help people need to participate in their community safely, to study and to maintain employment.”
Highlighting that the NDIS could transform lives, if made fit-for-purpose, Chris said that the NDIA’s failure to step up to the plate is a ‘body blow’ for thousands of individuals and families struggling with the condition.
“Drug Resistant Epilepsies are those for which no current treatment regime impacts on seizure control. That is devastating to someone’s ability to function in the world.
“Part of the Scheme’s access criteria requires that ‘all treatment options have been explored’ before a condition can be considered to have lifelong impact. But when the experts are saying that there’s no point trying anything else, because the drugs and the surgeries aren’t working and won’t work, that’s a moot point. Who are the NDIA to argue otherwise?”
Gold Coast dad Justin Wallace says that accessing the NDIS for his 6-year-old daughter Audrey has been yet another battle for an exhausted family.
“Audrey’s case is far from textbook; her neurology team and almost every epilepsy specialist in Australia have tried to figure it out, but it’s like nothing anyone has ever seen.
“She goes through these, what her team have called, cycles. It keeps changing all the time. They get things levelled out, everything’s fine, and then something changes – it changes in how it presents, how it affects her and suddenly the treatment just doesn’t work anymore.
“Since August last year, she’s lost over 50% of her strength and use of the left-hand side. She’s got muscular atrophy on that side of her body and can barely walk. We’d be watching her having seizure after seizure, and there was nothing we could do.”
Securing NDIS support, Justin says, has been an uphill struggle, and it’s far from over.
“One of us has to be constantly working, no matter what’s going on. Because we can’t pay the bills in hugs and kisses.
“We had to fight tooth and nail to be able to get carers that would be able to help us with Audrey through the NDIS. That in itself was a war.
“We’ve already gone through one review, because, when she did get onto the NDIS, it helped with absolutely nothing in terms of her epilepsy. Audrey requires 24-hour care and we weren’t approved for that in the last budget either. We were only approved for four hours a day.
“Until Audrey started having these seizures I had no real idea about epilepsy. I could not believe how wrong I was about everything and just how destructive it can be. It’s been the singular most painful thing I’ve experienced in my entire life.”