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‘Brought me to tears’: family that won landmark NDIS challenge now faces cut to support

·6-min read

Exclusive: autistic man’s funding package reduced by $38,000, leaving him in what his mother calls ‘the limbo the NDIS holds us all in constantly’

To Liam McGarrigle, the federal court building on the edge of the Melbourne CBD is known by another name. It is “Judge Judy’s house”.

It is the same building where Liam “met Ally McBeal”, says his mother, Michelle.

Liam, who is autistic and lives with an intellectual disability in regional Victoria, knows the building so well because four years ago his mother was forced to fight the national disability insurance scheme in the the federal court.

Related: NDIS changes could give agency chief powers to cut funding, former chairman says

In 2017, the McGarrigles, supported by Victoria Legal Aid, won a landmark case over NDIS transport funding that had implications for thousands of other participants. The agency appealed to the full bench of the federal court. Its appeal was dismissed.

Fast forward four years later and the McGarrigles are once again at loggerheads with the agency.

Guardian Australia reported that a growing number of families are being forced to appeal against changes to their funding, in what the federal opposition is calling a regime of “stealth cuts” to packages.

The Guardian can now reveal that Liam, 26, is also facing a significant cut to his NDIS worth tens of thousands of dollars.

Remarkably, that initially included a 70% reduction to the transport funding his parents had successfully secured in the federal court four years earlier.

“The main thing that, I’ll be honest, brought me to tears for a split second was the fact they had cut his transport funding,” Michelle McGarrigle, 56, says.

Aside from the transport funding, which was reduced from $11,120 to $3,456, McGarrigle was given no clear indication of which of Liam’s supports have been reduced.

A 1 November plan letter points to an overall cut of about $38,000 to Liam’s funding package.

After Guardian Australia contacted the agency for comment, McGarrigle says she received a call from a national disability insurance agency employee who said the transport funding cut was a “system error”.

Related: NDIS providers used unauthorised restraints on clients over a million times in 12 months

A spokesperson later said: “The agency has made contact with the family and is working with them to rectify an error that has been made in relation to transport funding. The agency apologises for the error.”

The agency was asked whether it would consider the reductions to Liam’s plan, but provided no further comment.

It means McGarrigles are still in the dark about which of Liam’s other supports will be reduced, given his plan has still been cut by $30,000.

“We’ve put in an internal review,” McGarrigle says. “We’ll now have to wait and see what the outcome of that is. As usual with the NDIS, it can take up to three months, or even more if they want more information.”

The McGarrigles live in Moriac, about 30 minutes’ drive east of Geelong. “[Liam] has for quite a few years attended a day program and supported employment five days a week,” McGarrigle says.

Because the McGarrigles live outside of Geelong and there is no public transport, he receives NDIS funding to cover the cost of those trips to and from his activities.

In 2015, the agency refused to fund the entire cost of the transport, leaving the McGarrigles spending thousands of dollars a year so Liam could participate.

Related: ‘Immoral and inexcusable’: how Australians in disability homes fell from the front of the vaccine queue

A two-year legal battle ensued, through the Administrative Appeals Tribunal and then the federal court.

“Ironically, Liam loved it,” McGarrigle says. “He got to go up to Melbourne, he got to go to the market, he got taken out to lunch.”

And during that time, the federal court building became “Judge Judy’s house”. But the process was “traumatic” for the family as a whole.

“There was two years of my life that was all about trying to prove to the top end that someone like Liam deserves to have a normal life,” McGarrigle says. “Most average Australians don’t have to hire a lawyer and turn up in a court situation. You’re made to feel like you’re the one in the wrong … I’m starting to shake now just thinking about it.”

The McGarrigles’ win in the federal court confirmed the agency was required to fully fund any supports or services it has deemed “reasonable and necessary”, such as Liam’s transport costs.

In November, his new plan was approved, confirming the cut to his package. Losing NDIS funding is difficult to take, but for the McGarrigles the frustration and anxiety is compounded by past experience.

“Since the federal court decision, Liam’s life hasn’t changed,” McGarrigle says. “He could have been given a five-year plan … because nothing’s changed.”

Instead, even with the agency’s claim of an “error” over the transport cut, the McGarrigles now face another run through the NDIS appeals gauntlet.

It will start with an internal review. If that fails, they may be forced to the Administrative Appeals Tribunal, where NDIS participants and their carers are often pitted against externally funded lawyers hired by the agency.

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Data shows a 20% increase in the number AAT appeals over the past 12 months, while Guardian Australia reported that disability advocacy organisations were being bombarded with new requests for help. Some cannot take new cases due to the backlog.

“If Liam didn’t have me … he would be sitting there with a stuffed plan,” McGarrigle says. “How many people are sitting there with less than what they are entitled to?”

Bill Shorten, Labor’s NDIS spokesman, calls the situation “diabolical” and accused the government of “presiding over a reign of terror in the NDIS”.

“Even after you go to the federal court to get something on the record, the Morrison government will come back and reverse any benefit at your next plan review,” he says.

McGarrigle is also not convinced the decision to cut Liam’s transport funding was an “error”, as the agency claimed.

Related: Federal court rules NDIS must fully fund 'necessary' supports and services

Either way, the family faces an uncertain future as they fight for the remaining funding.

“My 23-year-old daughter has an independent life where she’s out working five days a week, socialising with friends on the weekend,” McGarrigle says. “I want the same thing for my son. We’re talking about a 26-year-old young man who just wants to go to his day programs five days a week, to go to his work like his dad.

“There will need to be supports, and all I’m asking is for those supports to be put in place to even out the playing field.

“The idea of the NDIS in the beginning was, ‘this is the support he needs to live a normal life, independently’. Independently doesn’t mean that Mum, at the age of 56, nearly 57, has to put in hours every week making sure that everything is running smoothly.

“This is the limbo the NDIS holds us all in constantly, waiting for them to make a decision about how you’re going to live your life.”

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