"We have to band together and make sure that we get the NDIS that we deserve."
Under-staffing, failing technology and inconsistencies in classifications were the main issues discussed about the National Disability Insurance Scheme on ABC's Q&A.
The emotionally charged episode heard the experiences of those with disabilities and carers, as they battled the system to access funding from the NDIS, which is still being rolled out around the country.
The National Disability Insurance Agency declined to appear on the panel , which featured Paralympian Dylan Alcott, actress Kiruna Stamell, blind lawyer and former Disability Discrimination Commissioner Graeme Innes, the founder of organisation 'Starting with Julius' and mother of a son with Down syndrome Catia Malaquias and the Director of the Melbourne Disability Institute Bruce Bonyhady.
Image: ABC
One scathing audience member called the NDIA a "trainwreck", after Bruce Bonyhady called it a "once-in-a-lifetime opportunity" in 2016.
"I know so many people with disabilities, families and service providers that now see the NDIS as a trainwreck waiting to happen, with the poor communication, rushed policies, families and providers are getting out. Not really a once in a lifetime opportunity," she said, to the applause of the audience.
Bonyhady maintained he was still positive about the scheme, but admitted it was not meeting the expectations of those who needed it most. He blamed archaic technology and the lack of staff as major issues affecting the rollout of the scheme.
"This was supposed to be an eMarker that would enable people to transact quickly, would enable providers to claim easily. And we're just so far from that," he said.
"We also have a system that has been capped in terms of the number of staff that the agency has."
Image: Getty Images
One mother, who is the carer to her daughter who has Down syndrome, asked how families who are being "brought to their knees" navigating the system and deal with the "loss of control" they have with service providers using a "business-first model".
Alcott said that while he loved the "idea" of the NDIS, knowing the funding could be removed at anytime made people reluctant to "stick their necks out".
He was also scathing of the training -- or lack of -- that service providers were given.
"One of the biggest things with the providers, in my involvement with my company, where we consult with the NDIS, is that these people don't have much lived-experience with disability." he said.
"These people haven't had much training with disability. I talk to some people that run the call centre out of Melbourne, (including) the manager there. She has worked there for three years.
"Guess how much empathy and disability training she's done? Not a second. She's begging for. If people call up and they talk about their disability -- she has to Google it to understand."
Inconsistencies in the classification of disabilities was also a hot topic, with staff training taking another hit from Stamell.
"Dwarfism I always find is interesting because it's often about our relationship to the built environment, the outside world, but we can bend over, touch our toes," she said.
Ben, who has Down syndrome, appeared with his mother Sam, and they questioned the panel on the choices Ben had to move out of home and live independently, with social housing being a huge issue across the country.
"He should not be forced to live in a group sharing situation if that's not what he wants to do. I'm not forced to live with other unknown adults," Sam said.
Another audience member, whose son was diagnosed with last year autism at age four, became emotional as she said the "stress and frustration" of the process to receive their NDIS package left them relying on the community to help make ends meet.
"We have only just received our first NDIS package for our son. Whilst we're thankful to be living in a country that offers financial assistance to help our son, the stress and frustration when dealing with a process and the wait to receive funding meant we had to move out of our family home and away from our community and support network to make ends meet with out of pocket expenses," she said.
This was a familiar thought among the audience, as well as the panel, who were increasingly critical of the process of application and classifications of disabilities the NDIS enforced.
Issuing a rally-call, panel member actress, dancer and disability advocate Kiruna Stamell, told those applying for the NDIS to "fight" to make the system better.
"It's a human right that we're in your schools and participating that we go to your shops. And it will make this world and Australia so much better but we have got to band together and make sure that we get the NDIS that we deserve," she said.