FAMILIES and professionals made a heartfelt plea yesterday for a better deal for kids with disabilities in the service-starved Eurobodalla.
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The recently formed Eurobodalla Education and Therapy Services committee has asked Eden-Monaro MP Dr Peter Hendy to help establish a purpose-built disability services centre for children, from birth to 18, in the shire.
Parents Sally and Nick Minato spoke movingly of the lack of services which spurred them to leave the shire to get help for their son Frankie.
It was at the cost of their entire support network.
Frankie suffers from forms of both autism and epilepsy and has just returned from Sydney this week, where he underwent a general anaesthetic for a scan.
“I am mixing up six different drugs every morning,” Ms Minato said.
“I have a seizure chart I have to fill out every day.
“I have doctors’ appointments.
“On top of that, I am learning how to be an occupational therapist, a speech therapist and a physiotherapist.
“If I lived elsewhere, I could have more professional input.
“It is so stressful.”
However, moving to the Illawarra left the couple without the crucial family and friendship network they needed.
“I went from having family and friends and support, to trying to navigate a new city and new doctors,” Ms Minato said.
“It just wasn’t working.
“We came back knowing this is the place we want to raise our child.
“We know we are not the only people in this situation.
“We need a model and services that fit this area.”
Mr Minato told Dr Hendy that there was no paediatrician between Nowra and Bega.
“You are on your own at the moment here,” he said.
Speech pathologist and chair of the group, Vivienne Freestone, said the shire needed a multi-functional service, right from early intervention through a child’s entire schooling.
It must also extend to children with disabilities other than autism.
“There are no services for them, other than what preschools and schools can provide and some private services,” she said.
“For older children, therapy and social skills are just not being offered in this area.”
Preschool manager Jane Matthews asked Dr Hendy to help with funds to fit out a centre, purchase resources and to pay wages.
She also said parents needed a centre where they could get help with early diagnosis.
“We all know that early intervention is critical,” she said.
“That process (diagnosis) might take 12 months and that child has missed out on the therapy they need.”
Dr Hendy promised to research the issue.
“I will do some research on what programs are available to assist and find out what the bottom line is within the department of social services,” he told the group.
“I will try to find a person you can talk to who, hopefully, can come to see you and help you navigate through the issues.”