A Victorian mother is locked in a battle with the National Disability Insurance Agency over her daughter’s “voice”. At least that’s how Melanie Stephens describes the “talker” device her daughter Ella has been using for four years.
Ella, 11, lives with autism and the rare genetic syndrome cri du chat (5p-), which causes delayed physical development and intellectual disability. She is non-verbal.
“I am literally fighting for her voice, that the NDIS have deemed ‘not value for money,’” Stephens said.
In one video shared with Guardian Australia, Stephens asks Ella what she would like for breakfast.
After three taps on the Liberator device, the response comes – “toast” – and Ella smiles at her mother.
But the Liberator broke four months ago and Stephens’ attempts to have the National Disability Insurance Scheme fund the $7,000 device have become entangled in a protracted battle at the Administrative Appeals Tribunal, where the agency has engaged top firm Clayton Utz.
Stephens, who lives in Yarrawonga, on the New South Wales-Victoria border, said Ella had become increasing frustrated because she was unable to use the device.
“Her behaviors are a lot worse since the talker hasn’t been available – it’s pretty rough,” Stephens said.
“I’ve even got a video of her where we’re sitting and playing a little bit. And she runs off straight away to get her talker, which doesn’t work. She wants to be able to communicate.”
The talker device is part of Stephens’ appeal against reductions to Ella’s plan and denied supports first made in February 2021.
Since September, Stephens has been among the growing number of families caught up at the AAT.
Before coming to power in May, Labor had criticised the rising