In The Media | 18 April 2017

Terminally ill mother fears NDIS ‘writing off’ people with neurological conditions

Sydney woman Kirsten Harley has motor neurone disease (MND) and will lose the ability to move and speak.

The former academic applied to the NDIS for technology that allows people to use eye movement to communicate and do other regular activities, such as opening doors.

But Dr Harley’s request was refused last Wednesday.

“It’s pretty upsetting because it obviously affects me but it also affects my 11-year-old daughter [Kimi] and my husband [Densil] and family and friends around me,” she told the ABC.

“That’s a bit of a blow really, the idea that ongoing communication isn’t considered something that’s necessary to be funded under the NDIS.

“As my hand muscles stop working, I’ll need some other technology, so I can get out of the house if I’m home by myself in an emergency.”

Dr Harley fears other people with incurable neurological conditions are also being rejected by the scheme.

“My impression of what [the NDIS planner] was saying is that the disease is likely to progress rapidly and therefore it’s not worth spending the money,” she said.

“The whole point of the NDIS is to promote independence and to promote a place in society for people with significant disability.

Dr Harley, who is also on the NSW Motor Neurone Disease Association board, is expected to appeal against the decision.

Despite being disappointed with two plans, she also emphasised improvements she had seen under the scheme, including daily visits from carers.

“I’m grateful that the amount of support has certainly been increased above what I was able to access before the NDIS,” she said.

NDIS spokeswoman Maryanne Diamond would not comment on Dr Harley’s case.

“But if I was the person, and I was unhappy, I would be contacting the agency to go and have a discussion,” Ms Diamond said.

Source: ABC News