As parents of three boys with autism, Bec Curby and Matt Blake are no strangers to a challenge, but navigating the NDIS is proving to be one of their toughest yet.
Ms Curby, of Catalina, said she was exhausted after trying for almost six months to sign Seth, 13, and Xavier, 9, up to the scheme.
“You’re not just dealing with one person … we had eight people over the whole process,” Ms Curby said of her experience with the National Disability Insurance Agency (NDIA).
“There’s paperwork here, there and everywhere. It’s not realistic.
“It makes it really hard when you have someone different ring you – you’ve never spoken to them before, yet they want you to tell them everything about what you’re going through.
Amid a stream of calls, emails and assessments, Ms Curby said the height of their frustration came when they were questioned over Seth’s disability.
“It was hard to hear someone I had never spoken to say, ‘I’m sorry, but there’s doubt in my mind your child has a disability’,” she said.
“It’s 2017. Surely in this day and age you should know better. You should know your child does not grow out of autism.
“We know he’s diagnosed, we’ve got all the paperwork, but then we had to prove it.
“It’s hard hearing that it wasn’t enough, your situation isn’t bad enough, your child isn’t disabled enough.”
Instead of receiving the choice and control they expected from the NDIS rollout, the family has been left shaking their heads at Seth’s funding allocations.
It was hard to hear someone I had never spoken to say, ‘I’m sorry, but there’s doubt in my mind your child has a disability.- Bec Curby
“With (Seth’s) core funding, if we choose to use that funding alone for a carer or a support worker, broken down over the year, that would amount to 10 minutes once a week,” she said.
“That person is not going to be able to provide care or support or mentoring, they’re just a taxi service.
“Who are you going to hire for 10 minutes once a week? It’s not worth your time.”
The family says the funding mismatch, between their own two children, was evidence of broader issues in the system.
“Xavier got a decent chunk of money, whereas Seth, who needed it the most, he got next to nothing,” she said.
“It does not reflect the needs of the kids. The amount is appropriate, but it’s the way that it’s allocated that’s not appropriate.
“It’s like you’re talking to them (the NDIA), but they’re not really listening.”
An NDIA spokesperson said they welcomed feedback from participants.
“In April 2017, the NDIA proactively initiated a review in response to feedback from participants and providers that their experience with the NDIS was not meeting expected standards,” the spokesperson said.
“Decisions about the type of supports included in a participant’s plan are made based on what is deemed reasonable and necessary for them.
“We encourage the family to contact us so that we can look at their situation and plans in a holistic manner.”
Ms Curby hopes the packages will be adjusted to better suit her sons’ needs when they come under review next year.
“There are ways they can make it simpler. They can make it more user-friendly,” she said.
“I hope as it evolves, that’s what they do – make it so it’s not something you have to fight for.
“We’re already fighting, we’re already exhausted.”
They’re now urging for more power to be given to families in the planning stage.
“Before the package is approved, sign off on it, because that’s where control for parents is taken away,” she said.
“You don’t get to see the finalised plan or budget before it’s approved.
“You’re giving your hope over to someone and hoping they make the right decision for your family and your life and it’s not right.”
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