Navigating the National Disability Insurance Scheme: Kylie’s story

With the advent of the National Disability Insurance Scheme (NDIS) trial in her home town of Geelong, Kylie McCutcheon was optimistic that her support needs would continue to be met or even enhanced.

She was stunned when in November 2013, she was informed that her plan would not include physical therapies which she viewed as essential in keeping her mobile and independent.

Kylie, a single mother who was born with spina bifida and scoliosis, is also in renal failure and has a degenerating bone disease in her hip.

After the NDIS refused to provide the same level of care that she had been receiving through a Victorian government package, many aspects of her life began to unravel. While she initially used some savings to pay directly for her therapy, when this money ran out, her health deteriorated. She had to leave her job and withdraw from studies.

‘I went from being able to walk with a limp, to being confined to a couch, barely able to walk the length of the hallway, and needing to use a wheelchair,’ Kylie says. ‘I was in pain and taking ever stronger painkillers. I couldn’t do the things I needed to do, take care of my child the way I wanted to. The house looked like a bomb had gone off in it.’

At this distressing time, working out how to challenge the decision, after an initial appeal was rejected, seemed overwhelming.

‘I had a feeling of dread about trying to tackle the system on my own when I was at such a low point,’ Kylie says.

She got in touch with the Rights Information Advocacy Centre who provided her with invaluable support in what she describes as a ‘long, stressful, scary journey’. There, an advocate, James Keith, put her in touch with our senior lawyer, Rosalinda Casamento who took on her case.

In August 2015 the Administrative Appeals Tribunal upheld Kylie’s appeal. ‘This was the first time the Tribunal considered evidence of “lived experience” in deciding what was a ‘reasonable and necessary support’,’ says Rosalinda, who works in our Commonwealth Entitlements team.

‘The NDIS legal team relied on academic articles about the efficacy of chiropractic treatment. But the Tribunal in its ruling said that it gave “very considerable weight” to Kylie’s own personal account of how much it had assisted her,’ Rosalinda says.

‘Going to the Tribunal alone is very daunting – it’s a complex, technical and adversarial process. But as Kylie’s experience shows, it is very important to challenge decisions and get legal help.’

Since the decision to restore Kylie’s therapy after two years, her strength and mobility are returning. Kylie says she hopes that the outcome of her case will be greater recognition that people with disabilities are experts in their own condition and knowledgeable about what will help them.

More information

Victoria Legal Aid may be able to assist with an NDIS appeal in cases considered to raise ‘novel and complex’ issues. Read more about how to get other support and find out if you are eligible.

You can also get in touch with the Rights Information and Advocacy Centre for support.

Read the full judgment.