It was supposed to be a revolutionary system offering people with a disability more control and flexibility.
For some it has been just that – but for others, the National Disability Insurance Scheme (NDIS) has been a frustrating case study in making life more difficult for some of society’s most vulnerable members.
Helen Parkes lives in a Quakers Hill group home with three other women, surviving on a disability pension of $170 a fortnight.
Since switching to the NDIS she has lost access to services including hydrotherapy, and within a year she could lose the support of advocacy services.
Blacktown councillor and disability advocate Kevin Gillies helped get Ms Parkes into her group home. She was living independently in Lalor Park before falling and breaking her neck, an accident that left her in a nursing home at just 45.
“I was stuck there with all these people dying around me,” Ms Parkes said.
“I didn’t like it very much. We didn’t have any privacy, they didn’t like me going out independently.”
In the group home she has her own room, support workers, and her basic necessities are looked after.
But the NDIS doesn’t cover transport, meaning a trip out for lunch costs about one-fifth of her weekly budget before she’s placed an order.
Ms Parkes said she has even had problems getting funding for basic needs like catheters.
Citizen Advocacy Western Sydney (CAWS) manager Chris Laurie said while Helen is able to speak for herself, many people in similar circumstances are not.
She said some clients with a mental disability were unaware they were even having a meeting with an NDIS worker when their funding packages were worked out for the first year.
“Whatever’s in your package is what you’ve got for 12 months. So if you don’t get it right at that one appointment, you pretty much miss out,” Ms Laurie said.
“There’s some great things happening in NDIS. There’s a lot of people who are much better off. But there are also a whole lot of people that are worse off, and there is no apparent consistency.”
Ms Laurie works with clients to prepare them for their NDIS meetings and helps negotiate when necessities have been overlooked.
She has seen many devastating cases, including a significantly high-needs group home that had its annual funding reduced by $200,000.
“They’re trying to still do the same job. I applaud them for their efforts but they can’t do the same thing with three less staff,” she said.
“They’re trying to do everything they possibly can to support the workers and the clients but you can only do so much.”
Ms Laurie is concerned the state government has not committed to ongoing funding for advocacy services, or even agreed to meet with advocates. Support organisations like CAWS could be forced to close in July 2018.
State opposition leader Luke Foley has committed to funding independent disability advocacy services should Labor be elected in 2019.