A YARRAWONGA mum is fighting for her daughter's "voice" among other basic health needs in a battle nearing 18 months.
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Melanie Stephens was at an impasse with the National Disability Insurance Agency (NDIA), which had refused to fund Ella's talker device.
Ella, 11, has autism and the rare genetic syndrome cri du chat (5p-), which causes delayed physical development and intellectual disability. She cannot use speech.
Her talker device broke five months ago and Mrs Stephens' attempts to have the National Disability Insurance Scheme (NDIS) pay for a new $7000 device as well as her disability supports and therapies ended up at the Administrative Appeals Tribunal (AAT).
Ms Stephens said Ella had used the talker - a rugged tablet loaded with communication software - for the past seven years to speak with her family.
She said it was the only way she could articulate her needs and desires down to basis requests such as what she wanted for breakfast.
"It has been rough, without the ability to communicate, you can imagine how frustrating it has been for Ella!" she said.
"When she couldn't communicate with us with the talker she really went downhill."
Going without a device for Ella since March, the family was recently loaned a talker from the manufacturer, Liberator, while the AAT case continues.
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On Thursday, NDIA told Mrs Stephens it might fund the talker but her appeal against massive reductions to Ella's NDIS plan in February 2021 was ongoing.
Ella had an appendicostomy to allow her to empty her bowel but help to fund the associated medical supplies was denied.
"I haven't seen anything in writing yet (from NDIA) about the talker," Ms Stephens said.
"Even so, we're still fighting for Ella's therapy hours and all of her continence aids."
Ms Stephens said it had been an exhausting process, which had blown out since early last year.
"Once it went to the AAT, NDIA asked me to supply letters from an occupational therapist, incontinence nurse, speech therapist and pediatrician; I supplied all of that," she said.
"An independent OT actually recommended a hell of a lot more than we were asking for. All of the independent specialists recommended more but still those recommendations were ignored."
A letter from Ella's speech therapist requesting the talker device be replaced in March fell on deaf ears.
Initially, the agency used an independent specialist who suggested Ella could use an iPad with similar software, which would be cheaper.
But Ms Stephens said, in that case, Ella would need to learn how to use a new device and program.
Ella's own speech therapist argued that an iPad was not robust enough.
Ms Stephens said the independent speech therapist never met with them.
"I don't think the NDIA should write Ella off so quickly!" she said.
"When she was born they said she'd never make eye contact or crawl or walk or talk but through her talker she can communicate. It's her voice. That's the frustrating thing; that they don't see the value in it!"
A NDIA spokesman on Friday night said the NDIA this week advised the Stephens family that it would provide funding for Ella's talker device, which was a great outcome for Ella.
"The agency and Australian government's priority continues to be ensuring Ella has the disability-related supports she needs," he said..
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