Kanahooka mum Gillian Bathe was beyond frustrated when her daughter's NDIS package came back without many of the services she'd requested - yet including others she hadn't even asked for.
Ms Bathe was among a nearly 400-strong crowd of NDIS participants, carers, service providers, industry workers and supporters at a rally at WIN Stadium's Premier Room on Friday.
Part of a National Day of Action, events were held across the country although the Wollongong event was one of the largest.
Ms Bathe said getting the right plan for her daughter Alison, 50, was "torturous".
"I've asked for a review because while she needs more one-on-one support, there was less money for it," she said. "But the package did include funds for occupational therapy and a support co-ordinator which we didn't even request.
"... Having to continually go through all this puts emotional strain on all of us. People are losing sleep and some are near breaking point - we deserve better.
"Plans should be ongoing, (planners) should be competent in all aspects of disability and should stop humiliating clients and carers by asking for proof of disability when they've been in the system for years - 45-plus years in my case."
Another Illawarra parent, Leah Monks, outlined similar frustrations navigating an NDIS package for her son Shane, who has autism.
"It's quite overwhelming for me as a single mum," she said. "My main concern is with my age - if something happened to me tomorrow what's going to happen? There's no certainty."
Greenacres CEO Chris Christodoulou, a member of Illawarra Disability Alliance, said the way the NDIS was being delivered meant it was not working for everyone.
"The resolution we've passed unanimously calls on the National Disability Insurance Agency (which implements the NDIS) and our next government to fix the system," he said.
"It's about making the planning process easier for participants. It's also about making sure people's plans are simply rolled over and indexed each year if participants and carers want - rather than forcing them to go back year after year to prove what their needs are.
"And we certainly need whoever is in government to properly fund Australian Disability Enterprises (ADEs).
"We're determined to continue the fight to ensure the NDIS is the best it can be."
Nicky Sloan, Community Industry Group CEO, said disability service providers like Greenacres, Flagstaff and The Disability Trust were being "tied up in red tape".
"These great not-for-profit organisations have been delivering great services to people with disabilities for decades in this region," she said. "If we don't get the NDIS right, and soon, we're going to lose them."
Roy Rogers, CEO of the Flagstaff Group, said supported employment enabled people with disability to "participate meaningfully in the workforce, to enjoy social interaction of the workplace, develop new skills, and to feel respected, valued and included".
People like Christen Martin, a supported employee at Greenacres, who told the crowd said it was crucial for the NDIA to properly fund disability enterprises.
"I've been working at Greenacres for seven years - I feel socially included, I've achieved many goals and I met my now husband," she said.
"The NDIS is supposed to be about choice and control ... for many of the people I work with, if places like Greenacres and Flagstaff didn't exist, they wouldn't have jobs."
The issue was one of "human rights, fairness and justice" said Australian Services Union Secretary Natalie Lang: "The NDIS was won by people with disabilities, their carers and the workforce campaigning together, and once again we're going to campaign together to fix the NDIS."
Illawarra Federal Labor MPs Sharon Bird and Stephen Jones were at the rally, and backed the resolution.
"We will fight to ensure the story is the same for everybody under the scheme," Ms Bird said.
"We know many people have seen their hopes and dreams of the NDIS come true for them; however for too many people that's not the case."
Mr Jones said: "We want to be able to focus as a community not on the things we can't do, but on the things we can do. To be able to do that we need the NDIS to be working."
Labor has attacked the Morrison government for projecting an NDIS underspend in the April budget of $1.6 billion.
However Wollongong-based Liberal Senator Connie Fierravanti-Wells - who did not attend the rally - said in a statement said that a re-elected Morrison government would implement NDIS reform.
This would include rolling out new NDIS planning pathways to make sure people had a single point of contact with the NDIS, and could choose to be on a three-year plan if their disability was stable.
Illawarra NDIS National Day of Action Resolution
The resolution passed at the meeting calls on the Australian government and the NDIA to implement the following:
- Provide high quality participant plans with a transparent process of review and or appeal that is fair and timely.
- Allow participants to have their plans automatically indexed and rolled over annually unless they choose to review their plans because of changed circumstances.
- Remove unnecessary and costly red tape and complexity for participants and service providers.
- Guarantee the future of ADEs with a sustainable funding model which takes into consideration any costs associated with any future Fair Work Commission decision, and
- Ensure ongoing adequate pricing to cover real costs of doing business including staff training and investment to provide quality services.