Josh Grey’s seizures pay no heed to time or place. They strike as he crosses the road. While he’s in the shower, or on the toilet. In the bus or his parents’ cars.

Sometimes he falls rock-solid, stiff as a board, and smashes his head on the floor.

His father, David Grey, has had to haul him from the bottom of his now-sealed backyard pool at his home in Hawthorn.



“It was like leaving a 12-gauge in the backyard, loaded,” David said.

The National Disability Insurance Agency reduced the number of Josh Grey’s funded carers from two to one. Photograph: David Grey

His parents have found a way to manage the multiple daily seizures caused by one of the most severe forms of epilepsy, a complex degenerative condition known as Lennox-Gastaut syndrome.

But it depends almost completely on having two carers by his side.

So when the National Disability Insurance Agency cut the 18-year-old’s existing support plan earlier this year – reducing the number of funded carers from two to one – his family was driven to desperation.

“It’s just been gut-wrenching to try to come to terms with what they’re doing to us, and having no feeling, or no effort to understand what it’s like to look after someone with such high needs,” his mother, Catherine Jolly, said.



The decision has rendered him housebound, the family say.

Two people are needed to lift the 18-year-old to a safer position, when many of his multiple forms of seizure strike. Jolly badly injured her back last time she tried it alone.

His epilepsy is so severe and complex that his independent day program, run by care provider Alkira in Melbourne, cannot continue to accept him without two dedicated carers.

It takes one person alone to administer Josh’s powerful sedative – a chemical used in capital punishment in the United States – during particularly bad seizures.



His intellectual capacity has been reduced to that of a three-year-old. He has lost his comprehension of risk and acts on impulse, and can act out with aggression, including against carers and his family. That requires constant vigilance by those around him.

“It’s just an all around experience of living on eggshells with him,” Jolly said. “You’re just on high alert all the time.”

Like many, Josh’s family held a huge sense of optimism when the NDIS was announced. Initially, it was everything they had hoped. Two of Josh’s previous NDIS plans gave him funding for two full-time carers, allowing him to attend Alkira where he thrived and gained real independence. The NDIA staff were helpful, knowledgeable and open.

But the family said that had changed. They said staff became cagey and closed in the months before making the decision to halve Josh’s NDIS funding. The family has also faced lengthy delays after asking for a review of Josh’s support plan.

Their complaints mirror broader systemic issues identified by community groups and participants, who desperately want the landmark reform to succeed, but fear its implementation has been flawed.

The NDIA said it conducted a “comprehensive consideration” of Josh’s case before deciding to reduce the funding.

“Following comprehensive consideration that includes additional technical advice, the NDIS determined the requested level of supports did not meet reasonable and necessary criteria and would be more appropriately addressed through mainstream supports,” a spokesman said. “The mainstream health system continues to be responsible for the broader group of people who require medical intervention, or acute health supports outside the NDIS.”

The agency has also taken 12 months so far to consider a requested review from Josh’s family to have safety upgrades to the bathroom in his mother’s home, designed to prevent him hurting himself when the seizures are experienced in the shower.

It is a common complaint about the NDIS and one that led to a scathing commonwealth ombudsman’s report last month. The report found people with a disability were waiting months for simple callbacks when they asked for a review of their NDIS plans.

The NDIA is working to address the issue. It has formed a dedicated team to manage the backlog of outstanding reviews last year.

“It has allowed the Agency to be in a position to develop targeted strategies to identify and address specific root causes, reducing the inflow of review requests,” the spokesman said.