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Perth mother may have to quit work to care for autistic son after NDIS package cut by 70%

·7 min read

Labor accuses Coalition of ‘stealth’ cuts to disability funding as other families complain about recent changes


A Perth mother fears she will have to quit her job to care for her autistic son after his national disability insurance scheme package was cut by about 70%, in the latest example of what the opposition is labelling “stealth” cuts to the program.

The National Disability Insurance Agency (NDIA) insists there is no “directive to reduce funding to NDIS participant plans” and that its so-called Sustainability Action Taskforce – dubbed a razor gang by critics – is “no longer active”.

But those affected by funding cuts say they cannot work out why they are losing support.

Single mother Sarah O’Sullivan told Guardian Australia a shock $70,000 cut to 11-year-old Jonah’s plan meant she would only be able to afford a support worker once or twice a week.

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

It will also result in a reduction in the number of therapy sessions that Jonah will be able to undertake, just as he enters high school.

“I do worry he’s going to be at high school with his peers, and he’s not going to be able to do these things in a few years because he’s not learned how to do them before,” she said.

“When his friends want to catch a bus to go do something, that’s going to be a foreign concept for him and create this big gap.”

O’Sullivan said Jonah, who is autistic, has ADHD, selective mutism and anxiety disorder, won’t be able to catch the bus home from school alone or care for himself while she is still at work.

“I probably will have to leave my job,” O’Sullivan said.

“From what I can understand, if I have to go onto a Centrelink payment, I won’t be able to afford my rent… It would probably mean having to move out of the area that his high school is in.”

O’Sullivan is not alone in complaining about recent cuts to an NDIS plan.

In the past month, the mother of a terminally ill five-year-old battling a degenerative neurological disease told Nine News her child’s NDIS package had been cut by half, while the parents of a 20-year-old with multiple complex disabilities said their son would not get the 24-hour care he needs after changes to his plan.

In another case reported by the ABC, a 21-year-old living with autism and tuberous sclerosis had seen a $112,000 cut to her plan.

“The NDIS was designed so participants receive an individualised support package tailored to their needs,” an agency spokesperson said.

“Individual plans may go up or down depending on the level of support needed at review which is a normal part of the scheme.”

However, advocates like Jean Cotchin, of the NDIS campaign group Every Australian Counts, say that what they are seeing is beyond usual changes to plans.

“For example, some people have told us they were offered a two-year plan instead of one year, which is great, but the funding provided [is the] same as their last one-year plan,” said Cotchin.

“So they are really, really worried about how they can possibly stretch out their supports over such a long time. It has real impacts – it means people have to have less showers every week.

“Or [losing] the ability to communicate or use their bodies for a few days a week. It means people living in group homes miss out on getting out and seeing their friends, or playing sports.”

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Participants and their carers can appeal a decision by the National Disability Insurance Agency internally, or to the Administrative Appeals Tribunal (AAT).

Jonah’s plan was initially cut by 90%, but the agency reduced this to a 70% cut after O’Sullivan sought an internal review.

She now faces the prospect of an appeal to the AAT, which reported a 20% increase in NDIS-related appeals in the past financial year.

The opposition’s NDIS spokesman, Bill Shorten, has said this increase reflected the government’s “increasing attempts to cut the scheme by stealth by refusing supports or slashing plans”.

Mary Mallett, of the peak body for disability legal advocacy groups, the Disability Advocacy Network Australia, said members were recently being inundated with calls for help.

“This year in particular, the number of people coming to them for assistance with internal reviews or appeals with the AAT has just risen exponentially,” she said.

Naomi Anderson, of the Victorian-based Villamanta Disability Rights Legal Service, said participants contacting the service were “anything from anxious to terrified”.

“We’re seeing significantly increasing numbers of people calling to say that they’ve had their plan reduced, or they don’t have enough funding, and that in some cases things are looking quite dire,” she said.

Rachael Thompson, of the Rights Information Advocacy Centre, said her organisation was having a similar experience. “The situation was pretty bad before, but now it’s just gotten worse,” she said. “We’re hearing on the ground that more and more plans are getting reduced for no particular reason.”

The government, which is worried the scheme is becoming financially unsustainable, was forced to scrap reforms tipped to rein in spending earlier this year after a backlash.

It also set up a secret unit, called the Sustainability Action Taskforce, which was aimed at slowing spending on participants’ funding packages in part through a “targeted review of existing participant plans”, according to documents obtained by Guardian Australia in May.

An NDIA spokesperson said “the taskforce is no longer active” and insisted it would be “incorrect to link this to individual plan values”.

The spokesperson said there was “no directive to reduce funding to NDIS participant plans, and planning decisions made by the NDIA continue to be made in accordance with the NDIS Act”.

The spokesperson said the average NDIS payment per participant continues to grow, from $39,000 in 2018 to $54,400 in 2021.

Advocates say this figure also reflects the fact participants are using more of their funding as they have become more comfortable navigating the system.

They also claim on-average data can mask the large cuts experienced by families like O’Sullivan’s.

An NDIS spokesperson said of Jonah’s plan: “The agency is generally unable to comment on individual cases out of respect for privacy. However, it’s important to note Jonah’s previous plan had a two-year duration – and the current plan is solely for one year. It is important to consider comparable plan durations.”

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

O’Sullivan said in fact Jonah had been issued a 12-month plan for $95,732.50, which was then rolled over for another 12 months at the same value during the pandemic.

When his plan was reviewed, the agency indicated Jonah’s next 12-month plan would be for only $7,759.60.

On appeal, this was increased to $26,935.52, but still a cut of about $70,000.

O’Sullivan said she had been told the funding she had requested for a support worker was “not ‘reasonable and necessary’ and would be parental responsibilities”, referring to the legal test for NDIS-funded supports.

“The implication was that any normal parent would have to organise a way for their child to be cared for after school, which would be fair if Jonah was going to be in primary school, there is after-school child care,” she said.

“But what happens when that is no longer an option and he outgrows the child care system?”

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