A new website is being described as a “one-stop shop” for resources to support the safe transportation of children with disability and medical conditions.
The website, called the MACA Hub, has resources for parents and allied health professionals, as well as a national online register of seatbelt and seat types used by children with disability in Australia.
It has been developed by not-for-profit organisation Mobility and Accessibility for Children in Australia (MACA), which is the only national expert body focused on the transport of children with disability and medical conditions.
MACA Chief Executive, Helen Lindner, says there is an obvious need for the website, as a survey undertaken by MACA and Curtin University, in Western Australia, recently found significant challenges to the safety of children with disability or medical conditions in cars.
In the survey, over half of caregivers reported that a child had removed a seatbelt or restraint while the car was moving (45 percent got out of their car seat and 36 percent escaped their seatbelt) and this frequently impacted their safety.
Almost half believed their child was missing out on participating in everyday life because of a lack of safe and comfortable transport options.
More than two thirds of the parents and guardians surveyed reported that they had never received any information about safely transporting their child.
“Our new website of national resources is the result of almost two years of research, advocacy, policy development and, importantly, the lived experience of families and the clinical perspective of allied health professionals,” Ms Lindner says.
“It provides trustworthy, independent and evidence-based information to ensure families, health professionals and organisations have the right information at the right time for good decision making.”
Melbourne resident Sarah is part of the cohort of parents who have received information about safe transport and uses a specialised car seat for her seven-year-old daughter Fleur, who has been diagnosed with Rett Syndrome.
“From an early age when Fleur was doing her early intervention we were put onto equipment and things like that that help Fleur’s transport - so the Carrot car seats are a great example. We found out about that through the cerebral palsy education centre, the occupational therapist there, and I had no idea that you could get these specialist seats,” Sarah says.
The seat has not only supported Fleur to travel safely and comfortably in the family car, but has also allowed the family to go on regular road trips and spend time together.
Now that Sarah knows about the options available to support Fleur’s transport, she has also been able to arrange for a safe and comfortable option as her daughter grows.
“Fleur’s nearly eight now and she’s getting quite heavy so it’s really tricky lifting her into the car,” Sarah says.
“We’ve now received funding through the National Disability Insurance Scheme (NDIS) to get our van converted so that we can wheel her in and she travels in the vehicle in her wheelchair. I think that’s going to be life changing for our family.”
Ms Lindner says no family should have to worry about their family’s safety and well-being on any mode of transport, but a lack of accessible information until now has left many vulnerable children and their families travelling unsafely.
MACA’s new website aims to be the accessible resource that families need when looking for information.
MACA’s website and research have been funded by the Federal Government's Department of Social Services in an attempt to fill a gap in the policy, research and practice around safely transporting children with disability.
Sarah agrees there is a gap in the information given to families and that more support could be provided.
“I think the system could be improved for other families to make sure that there’s information out there, they know that there's equipment that their child can use to make it easier for them to travel in a car and safer for them to travel in the car, and that there’s funding that you can access through the National Disability Insurance Scheme for things like vehicle modification and conversions,” she adds.
Additionally, MACA’s research found that health professionals reported low self-perceived confidence and knowledge in addressing the transport needs of children with disabilities and medical conditions, impacting the support given to families.
This new website provides resources for professionals focused on developing skills in assessing how a child should travel safely, planning the safety products and strategies for the family to use, identifying funding options and completing documentation needed, and reviewing the child’s safety once the plan is in place.
The website also includes information about Australian safety standards for professionals to learn and case studies to use, while MACA will soon be launching online training to create the improvement in family support which is needed.
The resources provided on the website for parents include information about the safest ways for children to travel, who to go to for professional assessments, and stories from other families with lived experiences.
The website is available at www.macahub.org.