A blind and hearing-impaired woman says she is proof the National Disability Insurance Scheme (NDIS) can work if you can advocate for yourself.
Wendy Arentz from Tumut in the NSW Riverina was born with central vision loss and hearing problems, but her limited sight deteriorated in her 20s.
"I spent most of my life compromising," Mrs Arentz said.
"You do it so people don't know because of the stigma if you've got a handicap."
Mrs Arentz was referred to the NDIS through Centrelink when it rolled out in southern NSW in July 2017 and since then she has had nothing but positive experiences.
She now has a guide dog, Amos, and equipment that has allowed her to use a computer.
But Mrs Arentz was adamant that her success with the NDIS was dependent on her ability to explain the difference the assistance would make to her life.
"I've described how I would be able to use it, so more from a personal perspective so hopefully the person or the panel can have a picture in their minds," she said.
Mrs Arentz said for people that do not understand the system, or might have cognitive impairments, it would be a difficult process.
"I can see a problem for people who are relying on a local area person, or somebody they may not get on with, or somebody that's doing it for them but can't actually sit in their shoes," she said.
A 'complex' system to navigate
The ABC has reported examples of how people with disabilities have applied for funding for one type of assistance, only to be granted a different, less useful type or no assistance at all.
Including deaf man Lawrie Dobson who asked for $10,000 for hearing aids but received $15,000 for coffee and social outings instead.
"Certainly in the advocacy sector, we see that there is a hole in the current system," chief executive of Disability Advocacy Network Australia, Mary Mallett said.
"It's a complex system for people to understand and navigate and there aren't enough people independent from the system to help people to work their way through it."
Out of more than 277,000 people currently on the NDIS, Ms Mallett said around 60 per cent have a cognitive impairment.
"These people are mainly dependant on family, friends and other people — like their support workers and service providers — to speak up for them," she said.
Ms Mallett argued that access to independent advocacy was "crucial" to the success of the NDIS.
"If you have a vested interest in the person, you're going to make money out of helping them with their plan, then that's really inappropriate," she said.
"But it's not as simple as counting up the number of complaints and then assuming that everyone else is happy.
"There are lots of people who are in the NDIS who really don't understand what they've got or know that they could ask for anything better or different."
Need for stronger advocates
Mrs Arentz said she has been determined to advocate for herself and make the scheme work for her, frequently writing to the NDIS committee about her personal experiences.
"If it says 'it's to be used on the computer', then I've described how I've been able to use it so that hopefully the person or the panel can look at it and picture in the mind how this is going to help," she said.
"The NDIS guidelines use the terms 'reasonable and necessary'.
What's reasonable to you and necessary may not be reasonable and necessary to someone else. That has to change."
In a statement a spokesperson for the National Disability Insurance Agency (NDIA) said:
The size and scale of the NDIS means that it will not be without challenges, but ultimately it is a significantly better way of providing support for Australians with a disability, their families and carers.
People with disability and their individual choices are at the centre of the NDIS and the NDIA will continue to work hard to enhance the experience all participants have with the Scheme.
