Just a year after a tribunal ruled in Jon’s favour his parents are again fighting NDIS cuts

Ruth and Peter say they are up to their eyeballs in paperwork. They have a folder for everything.

"We're keeping Big W in business," says Ruth, 76, who did not want her surname published.

The paperwork relates to the bureaucratic battles they have waged on behalf of their son Jon, 43, who has a severe intellectual disability among multiple other disabilities and has spent more than a decade living in a group home.

Jon gets around in a wheelchair, is a keen Essendon supporter and lives with the rare condition Rasmussen's Encephalitis, as well as uncontrolled epilepsy, arthritis and a visual impairment.

The years before the NDIS were a struggle, but even when Jon moved on to the scheme in 2019, he didn't get a plan considered sufficient by his parents until March 2020, after taking their complaints all the way to the Administrative Appeals Tribunal.

Yet a year later, in April 2021, much of that same support was cut. "They have cut his core funding back by the order of $70,000," says Ruth, affecting access to his day programs and hydrotherapy, in addition to reducing the support in his group home by about $50,000 she says (about 23.3% reduction overall).

"Now we go back again."

They lodged a new AAT appeal in October. "We don't want bells and whistles, we want fundamental services for him."

Since last year, the NDIS has seen an enormous increase in the number of families appealing cuts to their plans at the AAT. Advocates have labelled the situation a crisis, while Labor, which wants to make the NDIS an election issue, is calling for reform.

Despite this, only on Monday, the NDIS minister, Linda Reynolds, played down the increased number of cases, saying those appealing were a "minuscule" fraction of those on the scheme.

Her comments came as a new report found there were 1,583 new AAT appeals lodged in the March quarter, a 244% increase on the same period in 2021.

"It's important that people have an avenue to appeal to the AAT," Reynolds said in a podcast on Monday.

For Ruth and Peter, the AAT process was tough enough the first time around. To battle through it for a second time in less than two years is almost unbearable.

It means more work and more uncertainty. They have filed freedom of information requests (one garnered 600 pages of documents) and waded through bureaucratically worded review letters. They need to seek new responses from Jon's specialists, working with a disability advocate from Villamanta Disability Rights Legal Service, which represented him successfully in their first AAT case.

On the other side, the couple are dealing with solicitors from the top law firm Minter Ellison, one of the many paid by the agency to deal with appeals. The agency has spent about $30m on legal fees to private firms so far this financial year.

Some have described supporting a person on the NDIS through the bureaucratic wrangling of the appeals process as like a second job and for Ruth and Peter, who are retired, such work is sure not how they hoped to spend their retirement.

"I'm 76 and Peter's 80 in three weeks," says Ruth. "So we're sort of at the point of wondering if we'll live long enough to keep this fight going."

An NDIA spokesperson said Jon's plan had actually increased in October 2021, noting it included some further Assistive Technology.

The spokesperson said Jon received "significant funding" and said his recent plan budget exceeded "the plan budget that was set by the 2020 AAT Order".

"The Agency has today spoken to Johan's parents, and will ensure that Johan continues to receive the reasonable and necessary supports that he requires," the spokesperson said.

Ruth disputed the agency's figures and says there was no question the new funding levels meant Jon's access to his community day programs, hydrotherapy and his level of care at the group home were cut back.

The couple were told in review letters that some funding was "not value for money", a section of the NDIS Act advocates say they are commonly seeing employed in funding denials.

During the lockdowns in Melbourne, Jon became increasingly isolated and withdrawn.

"The lockdowns in Melbourne were extremely severe, and particularly in [disability accommodation] and disability day programs," says Ruth. "The hydrotherapy, the pool was closed, therapists weren't able to go into his home, and so nothing was being used, or very little [of his funding] was being used.

"And it seemed to be from the comments that the planner made, 'You don't need the funding, because it's still sitting there'.

"He won't have enough funding to even go to his day programs, go to hydrotherapy, epilepsy training of staff, continence supplies or monthly socialisation which had previously been included. Now that has been cut back, it will not last the year by any means."

Ruth says that all the family is hoping for is some certainty.

"He's not going to suddenly go out and take on a job working at the local supermarket loading shelves," she says.

"We went to the AAT last time to actually obtain adequate services for him. Then 12 months later, at the review, the services then deemed "reasonable and necessary" by the tribunal were slashed.

"We're now looking ahead and saying does this have to happen every year?"