RURAL children under the NDIS are suffering thanks to a conflict that doesn’t understand their needs or what’s available in the bush.
That’s the fear of local families and service providers when it comes to a treatment that can help kids stay mobile or even delay their need for a wheelchair.
Problems with where it can be done and at whose cost “is causing distress for families, uncertainty for clinicians … and most importantly impacting on the function and well-being of children with a disability”.
That comment comes from Tamworth physiotherapist Luke Wakely.
He’s referring to serial casting: applying a series of short-term casts to limbs to manage stiffness and muscle contracture.
People with conditions such as cerebral palsy and Duchenne muscular dystrophy (DMD) have the treatment.
Dr Wakely said it “really should be the remit of the NDIS” – but there are conflicting interpretations of COAG-endorsed principles that outline who is supposed to fund it.
And at the heart of the issue are children like Taniora Kirk, 9.
People with his condition, DMD, usually need a wheelchair by the time they’re 12 – but that may be sooner if he can’t access timely and affordable casting.
Whose role is it?
Hunter New England Health told The Leader “serial casting for growth in a range of conditions, as part of disability care, directly related to maintaining or managing a child’s functional capacity is the responsibility of the NDIS.”
But an NDIS spokeswoman has said: “NDIS do not fund serial casting as this is considered active treatment.”
Dr Wakely said city children seemed to be getting help with far less “rigmarole”.
“In metropolitan areas, children receive this treatment from the large children’s hospitals such as Westmead, John Hunter or Sydney Children’s Hospitals,” Dr Wakley said.
But there was no equivalent availability of service in Tamworth, he said, so rural people either had the time and expense of travelling to one of these hospitals – “not a feasible option” for many – or paying out-of-pocket for a private physiotherapist.
Taniora’s mother Louise Kirk said he was having regular falls because of his tightening muscles, even hitting his head on one occasion.
She wants to keep him on his feet for as long as possible.
“He’ll have respiratory problems … his health will drop dramatically when he ends up in a wheelchair.”
Dr Wakely, who works full-time in another job but does casting on weekends “out of community need”, said he was frustrated that “rural kids miss out again”.
“My position is that the service needs to be provided for rural kids somewhere either within health or in the community – but funded – I don’t care where …
“I seriously doubt the intention of the COAG agreement was to take away basic therapy services from children with a disability, yet this is the reality.”