Significantly worried, she believes she may have to quit her job to care for her son who is autistic. The opposition has labeled the changes to the program as “stealth” cuts.
Commenting on the changes, the National Disability Insurance Agency (NDIA) says there is currently no “directive to reduce funding to NDIS participant plans” and that its Sustainability Action Taskforce, labeled a ‘razor gang’ by some analysts, is ‘no longer active”.
However, for those feeling the consequences of the funding reduction, there is confusion over why support is being lost.
Speaking to Guardian Australia, single mother Sarah O’Sullivan describes being jolted by the $70,000 reduction for her son Jonah’s plan, meaning that a support worker could only be afforded once or twice a week.
“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.”
Highlighting the challenges Jonah faces, managing ADHD, anxiety disorder and selective mutism, O’Sullivan explains that her son isn’t able to take the bus home from school or be left alone at home while she is at work.
“I probably will have to leave my job,” O’Sullivan said.
Others too are reeling from the recent reduction to NDIS plans.
In the last month alone multiple cases have emerged of reductions to plans.
A mother, of a five-year-old girl who is fighting a terminal degenerative neurological disease, said her child’s plan had been reduced by 50%. Further still other parents of a 20-year-old navigating multiple complex disabilities describe funding being reduced which voids the ability for 24-hour care which he needs.
The ABC reported that a 21-year-old living with autism and tuberous sclerosis had experienced a $112,000 reduction in her plan.
An agency spokesperson comments, “The NDIS was designed so participants receive an individualised support package tailored to their needs.”
“Individual plans may go up or down depending on the level of support needed at review which is a normal part of the scheme.”
“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.”
There remains an option, for both participants and carers, to appeal a decision by the National Disability Insurance Agency which is the internal route, or to pursue examination via the Administrative Appeals Tribunal (AAT).
Jonah’s plan initially saw a reduction of 90% however after O’Sullivan brought the matter before an internal review, the agency adjusted the reduction to 70%.
O’Sullivan may yet choose to pursue an appeal to the AAT. Tellingly the AAT has disclosed a 20% rise in appeals relating to NDIS in the financial year past.
The Disability Advocacy Network, the peak body for disability legal advocacy groups, has noted that members are now increasingly being called for assistance.
Mary Mallet, a spokeswoman for the group notes, “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.”
Naomi Anderson, of the Victorian-based Villamanta Disability Rights Legal Service commented that participants reaching out to the service ranged “anything from anxious to terrified”.
Continuing she describes, “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.”
Following a backlash earlier in the year the government was compelled to abandon reforms that were expected to significantly rein in spending, even as they spoke of worries regarding the unsustainable financial funding of the scheme.
The Sustainability Action Taskforce, forged in secret, was earmarked to dampen the spending on participants’ funding packages via a “targeted review of existing participant plans” as detailed by documents gathered by the Guardian.
When pressed on the matter, an NDIA spokesperson stated “the taskforce is no longer active” and firmly commented it to be “incorrect to link this to individual plan values”.
Continuing the spokesperson noted 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”.
They described the NDIS average payment growth, a benchmark of $39,000 in 2018 rising to $54,400 in 2021.
Advocates reflect that these figures highlight participants being able to use greater portions of their funding as navigating their package, and system at large, has become easier.
When asked about Jonah’s plan in particular, an NDIS spokesperson commented, “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.”
Responding, O’Sullivan states that Jonah had been given a 12-month plan for $95,732.50, which was carried through for another 12 months at the same value through the pandemic. Yet when his plan was reviewed, the agency determined that Jonah’s following year plan would only be to the value of $7,759.60.
When O’sullivan appealed this cut, Jonah’s plan was raised to $26,935.52, with his plan still suffering a reduction of $70,000.
When going through the response she received O’Sullivan describes being told her request for a support worker was “not ‘reasonable and necessary’ and would be parental responsibilities”, which related to the legal test determining NDIS-funded supports.
She says, “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,”
“But what happens when that is no longer an option and he outgrows the child care system?”
