NDIS recipient Gretta Serov with her mother Fay. Picture: Geoff Jones .HAWKESBURY residentGretta Serov passionately campaigned for the National Disability Insurance Scheme’s inception, but now that it has arrived, she feels betrayed as she feels it has taken away her independence.
Serov, 26, has Severe Athetoid Cerebral Palsy and is confined to a wheelchair. Shecannot speak, and communicates via an iPad.
Despite her challenges, Serov is reasonably independent. She attends University, and wants to do a postgraduate course in journalism and become a human rights advocate.
However, because of her condition, she needs help getting to and from places. Her mother lives in Leura, and her father lives in Bowen Mountain. She attends university and has an active social life.
To get to all these places, Serov needs a taxi capable of fitting her wheelchair, and therein lies her issues with the NDIS.
Under previous schemes, Serov was granted money, which she was able to use in whatever way she thought would make her life better. She chose to use it on taxis to have a social life and try to get a degree.
Under the NDIS, there are strict limits on what money can and cannot be spent on, and it has frustrated Serov to no end.
“Without access to my core funding for independent transport I have been left in the debilitating situation of being totally stripped of my independence,” she said.
A spokesperson from the National Disability Insurance Agency, the government body that runs the NDIS, refused to speak about Serov’s situation, citing privacy concerns.
The spokesperson said anyone unhappy with their NDIS plan could request a review.
“The NDIA encourages anyone unhappy with their NDIS experience to contact us,” the spokesperson said.
“Participants are also encouraged to contact the NDIA to look at the options for flexibility in using their plan.”
Serov said in 2011, she passionately campaigned for the NDIS, and was featured in the Sydney Morning Herald.
The fact the NDIS has in many ways made life tougher for Serov, the exact opposite of its stated aim, has been a slap in the face to the former program champion.
Serov said she had raised her concerns with representatives from the NDIA.
She said recently she had found a case worker at Penrith who took her complaints seriously, however, in the past, she felt as if staff did not understand her disability or condition.
“[When I]have tried to dispute the funding allowances with the NDIA, I have been either dismissed, ignored, expected to jump through hoops by providing layers of documentation that go nowhereand even worse belittled,” she said.
Serov said she had been told by NDIA staff she could simply get a lift with her parents to university and other locations, but said her powerchair did not fit in their cars.
“The only way I am able to get to and from university and retain some form of independence while on campus, is to either have a carer meet and swap cars with my mum at her work or my dad has to miss out on a day of work so he can drive me to and from university,” she said.
The NDIA spokesperson said the agency was reviewing some parts of the NDIS, in an attempt to improve services and outcomes for its clients.
“The NDIA will continue working with people with disability, their families and carers to resolve any issues during this unique period of transition and remains committed to getting the balance right between participant intake, plan quality and the sustainability of the Scheme,” the spokesperson said.
Member for Macquarie Susan Templeman said it was a shame Serov’s situation had ended up like it had.
“Gretta has always been encouraged to be independent and I was disgusted that the NDIS, which is meant to leave people no worse off than they were before, had failed to match her travel needs,” she said.
NDIS recipient Gretta Serov outside Hobartville Public School. Picture: Geoff Jones
Ms Templeman criticised the rollout of the NDIS, which has largely occured under the Coalition.
“There have been a range of problems with the rollout of the NDIS, in particular a clunky IT system and poor quality plans,” she said.
“I think some of this is about the level of training people are given and also that some of the rules are just not clear, and therefore decisions aren’t consistent.
“The IT system has been plagued by difficulties that have resulted in significant problems for people with disability and disability service providers.
“It’s vital that the Turnbull Government gets on with the job of fixing the NDIS IT system and ensuring that there are enough staff and they have access to proper training.
“The NDIS is the biggest social policy reform since the introduction of Medicare – it’s vital that we get it right.”
As for Serov, she told The Gazette she was happy an NDIA staff whom she had recently met was taking her complaints seriously.
However, she said she was ultimately dismayed that a program she passionately campaigned for, had morphed into something which had not improved her life and had robbed her of some of her independence.