Liam Haythorpe, who lives with autism, has always struggled to sit still in the car.
His parents, Amy and Alan Haythorpe, said his behaviour while on the road used to be not only distracting but "extremely dangerous".
"Liam was getting out of his car seat and running through the car," they said.
"He would be jumping around, just going crazy.
The family of eight tried several different car seats to keep Liam secure during trips, but the energetic seven-year-old would always find ways to break out of his seatbelt.
"In his old seats, he would slide down and start choking himself on the seatbelt," Ms Haythorpe said.
National surveys conducted by Mobility and Accessibility for Children in Australia (MACA) and Monash University have found the Haythorpes' experience is all too common.
They found more than half of children with a disability had broken out of their car restraints.
"It's unacceptable in today's day and age that this is the experience of families," MACA chief executive Helen Lindner said.
Ms Lindner said some families had been forced to go to extreme lengths to keep their children restrained in the car.
"We've had parents share with us harrowing stories of resorting to restraining their child with cable ties and duct tape because they felt they had no other choice," she said.
More speed bumps for families
With assistance from a health professional, after eight months the Haythorpes found the right restraint to keep Liam locked in and comfortable.
But the seat cost the Adelaide family $6,000 and the National Disability Insurance Scheme (NDIS) did not cover the expense.
Liam's parents were forced to pull money out of their superannuation to pay for the specialised restraint.
"If we didn't have the super, we wouldn't have got it — there's no way — and it shouldn't be that hard to get something that could save somebody's life," Mr Haythorpe said.
Even after they got permission to use money from their super, the Haythorpes faced plenty of challenges using the seat.
Despite being approved in both Europe and North America, most of the specialised car seats like the one Liam uses have not been tested against Australian standards.
It means they must go through a strict exemption process to be used legally.
That includes getting written approval from a doctor and organising a meeting and inspection with the Department for Planning, Transport and Infrastructure.
Once a restraint is approved, a certificate must be carried in the car at all times when it is in use.
"I can't actually move the car seat to other cars. It's just for my car," Ms Haythorpe said.
"So if something happened to my car and I had to put it in Alan's car … we'd get a fine for it."
Despite the hurdles, the Haythorpes said they could not get by without the special car seat.
"It has been a lifesaver," Mr Haythorpe said.
"Now he (Liam) gets in. He puts it on himself.
"I help him with the seatbelt part. He actually likes sitting in it and he doesn't even try to get out of it."
The car seat straps Liam in tightly with a five-point harness which needs a key to be unlocked and provides extra lateral support, which keeps Liam upright to avoid him sliding out of his seat.
MACA says greater government coordination needed to address issue
MACA, a government-funded organisation, says a lack of national coordination between governments means families like the Haythorpes have had restricted access to the "life-saving" equipment.
"I had the luxury of walking into a shop and purchasing a child restraint and I had every confidence that it was going to meet my family's needs," Ms Lindner said.
"This is not the same experience for people with kids with disabilities.
"And then when they do finally get access to the restraint system they need, we are hearing it's life saving and life changing."
MACA is building a case to make these products more accessible by conducting its own crash tests with specialised seats that are yet to be deemed compliant by the Australian government.
Filling the information gap
The research project involves six families across Australia, including the Haythorpes, documenting their experience transporting a child with a disability on video.
The researchers found from their national surveys that 70 per cent of families with a disability had received no information about how to safely restrain their child in the car.
"Parents have spent years doing their own investigations, trying to find the information they need to keep their children and families safe when travelling in motor vehicles," Ms Lindner said.
MACA has created a website to help fill the information gap, not just for families but for governments and businesses, too.
"This research will provide a deeper understanding of the experience of families than we've ever had before, which will inform the development of new products and services that respond to the real-world transport needs of families living with disability," Ms Lindner said.
The research project is expected to be completed later this year.
