Anna Noon, of Speers Point, said it took 14 months to go through the Administrative Appeals Tribunal (AAT) after her son’s plan was slashed by more than 70 per cent without warning.

Her son, Zach, became an NDIS participant during the trial of the scheme in the Hunter.

“Everybody who came on board during trial expected there to be lots of teething problems, and there were at that time,” she said. “The thing is, I think things are probably getting worse.

“Lots of those lessons they could have taken from trial seemed to go out the window when they went to the full scheme.”

Zach, 11, is on the autism spectrum, and has ADHD and oppositional defiant disorder.

Ms Noon said their first plan had been “reasonable”, as, through extensive consultation, the planner had a good understanding of Zach’s needs.

“You had the planner’s phone number, and there was a lot more communication,” she said. “It wasn’t until the next year we started seeing massive reductions.

“You often feel that the planning meetings go really well, and that there is a really good understanding of needs, and then the actual plans that follow can be quite different from the conversations that were had.

“The process then goes off to a behind-closed-doors discussion, and it comes back and there’s no further communication. You’re just told, ‘This is what has been approved,’ and you are sent a copy in the mail. It has been at that point that we’ve had some challenges.”

Ms Noon said one of Zach’s previous plans had come out when the NDIS portal was down.

“There was an agreement to just roll over his plan for six months until some of the infrastructure was back up and working,” she said.

“As soon as that came back on, they just re-wrote a plan based on their feelings – which was significantly different from his previous plan. It was slashed by about 70 per cent, which we have seen happen across the board – particularly with kids on the spectrum, at that kind of age. It seems to be a fairly common experience.”

Ms Noon did not receive responses to her formal complaints, and when an internal review stated the NDIA was upholding the plan, she worked with a disability advocate to begin the process of having the matter heard by the tribunal.

“Eventually everything we requested was approved, based on our evidence.”

Ms Noon, who has also worked within the disability sector, said she had suggested “significant reductions” for Zach’s latest plan due to his changing needs.

“What I proposed was a lot less than previous years, but again, the plan came back a lot less than what I had requested again,” she said. “They basically told us that we were welcome to take it back to the AAT, and ‘You’ll probably get it, but I’m not going to give it to you’. It seems to be this policy push to keep plans to an absolute minimum.”

Ms Noon was concerned the people who need the support of the scheme most may have trouble negotiating its “very difficult, flawed system”.

“It is a little bit frightening for how other clients actually manage to get the supports they require,” she said.

“Each year is like starting from ground zero again, and having to build a really complicated case about what’s required and how it’s required, and jumping through hoops. The time and effort that went into those 14 months was – for a family who clearly has a lot of competing demands, including trying to care for our child with a disability – extreme.”

Ms Noon said cases were often settled just before an official hearing.

“It gets just before the court date, and they settle outside the court in order to avoid precedents,” she said.

“At the last minute, the families are given what they want. This year, if we want to get a similar level of support, we would have to go right through that again because there hasn’t been precedents made. They are absolutely dragging it out,” Ms Noon said. ​“We’re taking some very overstretched, over-stressed families and putting them through a really exhausting process.”

Kellie Wall, of Medowie, has just been through the tribunal process too, after the NDIA tried to slash her son Braith’s plan by 65 per cent.

Braith has cerebral palsy and a seizure disorder.

The family “finally” ended up getting most of his original plan restored, but not until they put up a big fight and endured some “intense negotiations” at a seven-hour case conference in Sydney.

“We still don’t have any explanation as to why they cut our funding, or how they came to that decision,” she said. “It feels like they’re doing what the insurance companies do. Deny, deny, deny, until most people either go away or give up. I hear so many stories where families just give up. And they miss out, and even go backwards. Hopefully, if it all works out, at least I can say to people – the process works.

“Yes it’s long, yes it’s arduous, yes it can be a pain in the bum, but it does eventually work. But it has been exhausting, and it has been frustrating, and I do worry for all the people who don’t have anyone who can go in to fight for them.”

An NDIA spokesperson said the Government supported an individual’s right to seek a review and test the validity of a decision made by the NDIA. 

“The time taken for a matter to be reviewed by the Administrative Appeals Tribunal (AAT) depends on the case to be heard, and the availability of the tribunal,” they said. “While a matter is pending before the AAT, participants can still continue to access the funding in their plan. The NDIA takes a conciliatory approach to all AAT appeals. Approximately 90 per cent of all AAT matters are resolved without a substantive hearing; either by consent agreement, withdrawal, or a lack of jurisdiction for the AAT to hear the matter. To date, 618 AAT matters have been resolved before hearing and 27 have proceeded to the tribunal.

“All AAT matters represent 0.33 – or one third of one percent – of all NDIS access decisions.”

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