‘Fighting for her voice’: mother locked in legal battle with NDIS over daughter’s talker

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 increasingly frustrated because she was unable to use the device.

"Her behaviours 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 number of these appeals, the complicated and lengthy process for NDIS participants and the agency's use of private law firms to defend the cases.

Stephens said she had to gather a long list of new evidence for the tribunal. When that was completed, the agency's lawyers had sometimes insisted on their own independent assessments anyway.

One case conference was postponed, Stephens claimed, because the agency's lawyers failed to attend.

The family had acquired the talker device before Ella joined the NDIS.

A letter from Ella's speech therapist recommending the device be replaced after it broke was insufficient. The agency engaged an independent specialist who made their own assessment based on previous reports, without meeting Ella.

That specialist suggested Ella could instead use an iPad with similar software loaded on to it, which would be much cheaper for the agency.

But Stephens said that would require Ella to learn how to use a completely new device and program.

Ella's treating speech therapist maintained that a tablet was less durable and did not have the volume needed for communicating with more than one person.

After months without any device for Ella to use, the family was recently loaned a talker from the manufacturer while the AAT case plays out.

It is understood that the family's request for the talker is being reviewed again by the agency.

Stephens is also fighting for continence products that Ella relies on and which the agency has refused to fund, among other supports.

Stephens provided a letter from a continence nurse, but the agency wanted a separate assessment from a continence nurse unknown to Ella.

An NDIA spokesperson said it was not "appropriate for the NDIA to comment on individual cases before the Administrative Appeals Tribunal".

"In order to fund supports, the NDIA must be satisfied that the support being considered meets the legislative requirements, including that it represents value for money and is appropriately funded by the NDIS," the spokesperson said.

"Supports may not be approved where lower-cost options are deemed a suitable alternative or are more appropriately funded by other support services.

"The agency has an early resolution approach that assists participants by working with them and their representatives to resolve their matter as early in the AAT process as possible."

The new government has promised to reform the appeals process by introducing an expert review that could keep cases like Ella's out of the AAT.

Stephens said the past year had taken its toll on the family, especially because much of the appeals process had focused on what Ella couldn't do, rather than what she could.

"When she was born I was told she would never walk, communicate, make eye contact and more," Stephens said. "But as you'll see she has achieved so many goals and is determined as hell.

"An entire year of focusing on the negatives just to get what she needs, and to get people to listen, has been so bloody draining."