A new website is described as a “one-stop-shop” for resources to support the safe transportation of children with disabilities and health problems.
The website, called the MACA Center, has resources for parents and healthcare professionals, as well as a national online registry of the types of seat belts and seats used by children with disabilities in Australia.
It was developed by the nonprofit Mobility and Accessibility for Children in Australia (MACA), which is the only national expert body focused on transporting children with disabilities and health problems.
MACA CEO Helen Lindner said there was a clear need for the website, as a survey by MACA and Curtin University in Western Australia recently revealed significant challenges for the safety of children with disabilities or with health problems in cars.
In the survey, more than half of caregivers reported that a child had removed a seat belt or restraint while the car was in motion (45% got out of their car seat and 36% escaped their seat belts), which often had an impact on their safety.
Almost half believed their child could not participate in everyday life due to a lack of safe and comfortable transportation options.
More than two-thirds of parents and guardians surveyed said they had never received any information about the safe transportation of their child.
“Our new national resource website is the result of nearly two years of research, advocacy, policy development and most importantly, the lived experience of families and the clinical perspective of allied health professionals,” said Ms. Lindner said.
“It provides reliable, independent and evidence-based information to ensure families, healthcare professionals and organizations have the right information at the right time for good decision making. “
Sarah, a Melbourne resident, is part of the cohort of parents who have received information on transport safety and use a specialized car seat for her seven-year-old daughter Fleur, who has been diagnosed with Rett syndrome .
“From a young age, when Fleur was doing her early intervention, we were put on equipment and things like that that help with Fleur’s transportation – so the Carrot car seats are a great example. We found out through the Cerebral Palsy Education Center, the occupational therapist on site, and I didn’t know you could get those specialist spots, ”says Sarah.
The seat not only helped Fleur travel safely and comfortably in the family car, but also allowed the family to take regular road trips and spend time together.
Now that Sarah knows the options available to support Fleur’s transportation, she was also able to arrange a safe and comfortable option as her daughter grew older.
“Fleur is almost eight years old now and she’s getting pretty heavy, so it’s really hard to get her into the car,” Sarah says.
“We have now received funding through the National Disability Insurance Scheme (NDIS) to convert our van so that we can ride it and she travels in the vehicle in her wheelchair. I think it will change the life of our family.
Ms Lindner says no family should have to worry about their family’s safety and well-being regardless of the mode of transportation, but the lack of accessible information so far has left many children vulnerable and their families travel in danger.
MACA’s new website aims to be the accessible resource families need when looking for information.
The MACA website and research was funded by the federal Department of Social Services in an effort to fill a gap in policy, research and practice regarding the safe transportation of children with disabilities.
Sarah agrees that there is a gap in the information given to families and that more support could be provided.
“I think the system could be improved so that other families make sure that there is information, they know that there is equipment that their child can use to make it easier for them to travel by car and safer for them to travel by car, and that there is funding that you can access through the national disability insurance plan for things like modifying and converting vehicles, ”she adds.
Additionally, MACA research found that healthcare professionals reported low self-confidence and knowledge in meeting the transportation needs of children with disabilities and with health problems, which has an impact on support for families.
This new website provides resources for professionals focused on developing skills to assess how a child should travel safely, plan safety products and strategies for the family to use, identify funding options and complete the necessary documentation, and review the child’s safety once the plan is in place. place.
The website also includes information on 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 that is needed.
The resources provided on the website for parents include information on the safest ways for children to travel, who to contact for professional assessments and stories from other families with lived experiences.
The website is available at www.macahub.org.