A Hamilton family say they have left in the lurch after the bus company responsible for taking their disabled son to school suddenly axed his transport.

And Trevor Hills says if he didn't ring GoBus on Thursday about a separate issue, he doubts they would ever have found out the bus wouldn't be picking his son, Justin, up for school today.

GoBus today says it takes responsibility for the issue and that it should have communicated the issue with the family earlier.

Nigel Piper, Chief Operating Officer, says they had to pull the bus used for Justin's transport from service after an audit found his wheelchair was outside the recommended weight limit.

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The family will now have to take him to school themselves using a trailer and ramp.

Justin, 14, is the only person in New Zealand to suffer from the rare, inherited, congenital neuromuscular disorder called nemaline rod myopathy.

It means he has little if any muscular strength on his body - along with the inability to swallow and breathe without assistance - and is completely reliant on his parents for everyday tasks. He also requires an electric wheelchair for mobility.

"He's on a respiratory machine 16 to 18 hours a day. He lasts probably about three hours off the machine and then he's got to go back on again."

But it's a routine the family and his school, Fraser High School, are familiar with.

He jumps on his machine during breaks to get him through the day.

"He's absolutely determined to stay at school. Going to school is the only place where he can get away from his parents because every other facet of his life we're there.

"We're hovering around in the background, we have to toilet him, we have to carry him, we have to look after him. So school is his one real escape and he loves it.

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"Neurologically he's fine and he does really well at school, he's a bright little kid. It's just his body that stuffs up."

Justin Hills, 14, has a rare neuromuscular disease and is reliant on Ministry of Education funding to get to school. He's now stranded as the school bus is no longer compliant. Photo / Trevor Hills
Justin Hills, 14, has a rare neuromuscular disease and is reliant on Ministry of Education funding to get to school. He's now stranded as the school bus is no longer compliant. Photo / Trevor Hills

However, to get to school, GoBus receives funding from the Ministry of Education to get him there and back.

Hills said he called the bus company on Thursday to talk about their family van going in for repairs when he was suddenly told Justin wouldn't be getting picked up today.

"They said 'our vans don't meet compliance anymore so we can't pick him up'. And we said, 'when were you going to tell us that?'"

He'd been told the issue had come down to new compliance rules around the strength of the straps which hold Justin and his electric wheelchair in place in the back of the van. The legal level had suddenly gone up from 150kg to 200kg.

He said he'd been told by the Ministry that ultimate responsibility laid with them, his caregivers, to get Justin to school.

"I thought 'gees, if they're not going to stand up for us ...' It's so jolly frustrating. I'm just gobsmacked."

Piper apologised to the family for what he labelled a "communication breakdown".

"Go Bus takes responsibility for the problem that occurred with Justin's transport, and we sincerely apologise for not communicating with his parents in a timely fashion. This should not have happened, and was the result of human error."

Piper said they decided to stop transporting Justin on health and safety grounds.

"This was not properly or adequately communicated to Justin's parents, in a timely manner. We are very sorry for this.

"Whilst late with our communication, we have suggested an alternative transport arrangement option and options for obtaining alternative funding. Understandably, the family would prefer to keep things as they had been."

Piper added the company would "not surprisingly" be given Government funding for the period they were not intending to transport Justin.

"That said, we will work will Justin's family to cover their costs while we work towards getting Justin back on his normal van to school."

Ministry of Education's Kim Shannon said they first discovered there was an issue last Thursday when they were contacted by Justin's dad.

"We followed up with the bus company immediately.
 
"Go Bus advises their anchoring is limited to an 85kg wheelchair (exclusive of the passenger) but Justin's wheelchair is in the order of 165kg, which has rendered the anchoring non-compliant for that particular wheelchair.
 
"We know how important our services are to help students access education so were disappointed that the bus company was not in touch with both Justin's family and the Ministry as soon as they were aware of the safety compliance issues and the resulting impact on Justin's school transport."
 
The family will receive an allowance to take Justin to and from school while Go Bus are refitting the vehicle, she said.