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Imagine trying to navigate a complex healthcare system when the nearest health services are hundreds of kilometres away and the waitlists are months or even years’ long. For Jenny and Shane, parents of six-year-old Amelia*, this was the frustrating reality of country life. Jenny recalls,

“Amelia was just two when she started to throw these doozy tantrums. At first we just thought it was the ‘terrible twos’. But then they started to happen more and more often, and would become these full-blown meltdowns. Nothing I did would console her and I just couldn’t find a way to connect with her or comfort her.”

It’s not uncommon for parents like Jenny and Shane to assume or be told that the issues their child is experiencing are simply ‘bad behaviour’ and sadly, it makes navigating a complex health system to access the right advice, services and support incredibly difficult. This difficulty is only compounded if you live in rural or remote Australia.

“I started to dread going out in public, Amelia couldn’t cope with the cold or the noise of the shopping centre and would just lose it. I felt so judged. It was impacting both of us, the day-to-day was a total nightmare, ” says Jenny.

When the meltdowns didn’t abate, a GP told them to take Amelia to see an occupational therapist, knowing they would be able to determine whether her behaviours were a sign of an underlying health or developmental issue. But the waitlist for the occupational therapist was many months’ long and there was little Jenny or Shane could do in the meantime.

By the time they secured an appointment, it was December 2019, and Amelia was starting school in just two months. After reading about children with similar tendencies, they asked if Amelia might have autism.

The occupational therapist explained that diagnosing autism is a complex process requiring a comprehensive assessment. Amelia would need to see a number of health professionals, including a paediatrician, psychologist and speech pathologist.

With limited options and a very limited family budget, it quickly became apparent the only options available would involve huge waiting lists, irregular appointments, and long trips in multiple directions. Jenny did find an option for a full autism assessment to be done privately, but it was going to cost thousands of dollars – money the family simply didn’t have.

Meanwhile, Amelia wasn’t coping in her first term at school. Jenny postponed her planned return to work to care for Amelia. With no diagnosis, there was virtually no support available to the family at home or school.

Thankfully, a paediatrician was able to see Amelia via a Telehealth appointment in May this year and suggested that he refer her to Royal Far West’s Paediatric Developmental Program. Amelia and Jenny will be coming to Manly in the New Year for the initial residential component of the program, where Amelia will have a number of comprehensive health assessments with our multi-disciplinary team of paediatric specialists, free of charge.

Our team will be able to provide Jenny and Shane with a diagnosis, which means they will finally be able to start accessing services through channels like the NDIS, and Amelia will finally be connected to the support she needs.

But, Amelia is one of the lucky ones. There are thousands of other Australian country children who have complex, undiagnosed health concerns and limited or no access to the right healthcare.

* To ensure privacy and confidentiality for our client families, our stories are representative in nature and real names or images are not used.

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