A terminally ill woman has been denied access to technology that will allow her to continue to communicate with her family in her final days.
Kirsten Harley lives with motor neurone disease (MND), and is gradually losing the ability to control movement in her body and speak.
The Sydney woman applied to the National Disability Insurance Scheme (NDIS) for technology that would allow her to continue to communicate with her family using eye movement.
Dr Harley’s request was denied by the NDIS last Wednesday.
‘It’s pretty upsetting because it obviously affects me but it also affects my 11-year-old daughter and my husband 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.’
Without the technology, Dr Harley will eventually be unable to communicate with her loved ones.
Dr Harley said her condition worsened with each day and the prospect of losing the ability to communicate was frightening.
She said the point of the NDIS was to promote independence for people with significant disability and felt she was neglected by the system.
‘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.
Dr Harley said she planned to appeal against the decision.
While she was unhappy with the NDIS refusal for the technology, Dr Harley said the scheme generally treated her well and she supported the provider.
She told Daily Mail Australia on Saturday the NDIS increased her carer hours and for that she was hugely grateful.
The NDIS told Daily Mail Australia it could not comment on Dr Harley’s situation.
‘Due to privacy legislation we are not able to comment on her individual case,’ a spokeswoman said.
She said Dr Harley was welcome to an appeal, as was anyone relying on the NDIS.
‘Any person directly affected by an NDIS decision on their individual plan can request a review,’ she said.
Dr Harley was told she had MND four years ago and has documented her journey of gradually losing control of her body.
‘Mobility losses have become more subtle, the slipping away of straightenable fingers… pain as joints lose supporting tissue, the disappearance of residual arm strength and any capacity to move my legs, so that I need help for pretty much everything,’ she said on Facebook this year.
‘My swallowing and breathing muscles have weakened, so that I can only manage some foods and need Masky McMaskface at night to oxygenate my blood.’
Dr Harley, who is also on the New South Wales Motor Neurone Disease Association board, said the most awful part was losing friends to the disease.
‘And worse, part of this bittersweet journey, having to bid goodbye to more friends this year, several diagnosed after me, two for whom pregress had been much slower,’ she said.
Dr Harley said her husband Densil and her 11-year-old daughter, Kimi, were her inspiration to stay positive.
‘[They are] enriching my life with love and jokes and achievments and music and dancing and photos,’ she said.
Dr Harley also shared the sobering reality that her family were also left with all the jobs she could no longer do.
‘Feeding, scratching, positioning, driving, nose wiping, wee-bag emptying and problem solving with generosity,’ she said.