Some programs are born out of strategy. Others are born because people keep turning up in front of you with nowhere else to go.
For David Ryan, founding director of Meliora, Unfunded Lives did not begin as a polished idea on paper. It began quietly, through people already connected to Meliora. “They were usually family members of people that were already clients of ours, or friends, or something along those lines,” he says. “They had someone that they knew that they thought should be on the NDIS, that they would be eligible, that they obviously had a lot of needs in their life that weren’t getting met.”
At first, it was informal. Someone would ask if there was any way David, or Meliora, could help. Then it happened again. And again. Over time, a pattern became impossible to ignore. “Through engaging this, it highlighted a deep sort of need in the local area where people either didn’t have the funding to pay for the reports that were needed, or they didn’t have the support to actually engage the application process.” He says some had already been through local pathways for help, but “the LACs might have helped them before, but obviously had fallen very short.”
That is where Unfunded Lives really began. Not as a theory, but as a response. “It was just a natural progression of providing disability support services and having these situations arise,” David says. “That was sort of followed up with the feeling of, you know, maybe we can actually just help them out, help them get over this initial hurdle and go from there.”
In those earlier years, the people Meliora helped were often less extreme than the cases the program is now taking on. David describes people who were “somewhat functioning in the community,” but heavily dependent on family or informal support, often older, isolated, and resigned to the life they had come to accept. “Most of them were probably less extreme cases than some of the ones that we’re dealing with now,” he says. “They were probably very dependent on their family members, or people in their informal network. They probably had a fairly isolated life as well that they’d kind of just come to accept.”
As Meliora grew more connected with local GPs, the shape of the work changed. Referrals started coming through for people in far more desperate situations. “Once we became a little bit more connected in with a particular GP in the local area, they started referring who they think are the most desperate and in need of help,” David explains. “So once there was that connection with the GPs that sort of refined, I guess, the target audience.” He is clear that doctors are often the ones who see just how bad things have become. “They’re the best avenue for us to filter, or have a referral system, essentially.”
What David has learned since then has changed him. When asked about the impact of coming face to face with these lives, he does not reach for polished language. “I guess for me, it’s probably been a bit humbling,” he says. “When we live our own life, we tend to not really be truly aware of what someone else’s life can look like.” To advocate properly, he says, you have to understand what someone’s life is actually like. “It’s given me insight into actually how tough someone’s life can really be.”
And often, it is far worse than it first appears. David describes one man who had put “a real Aussie bloke attitude on, you know, she’ll be right mate, kind of spin on everything.” But behind that front was a life that was barely being held together. “He was daily in a life and death throw, almost,” David says. “And 18 months later, was still in the process, and at the ART trying to get him the help that he actually desperately deserves.”
That is one of the hardest truths sitting underneath Unfunded Lives. The people who most obviously need support are often the people least able to get through the front door of the NDIS. David has a name for it: the “evidence pay wall.” He says there are two main reasons some severely disabled people stay locked out. “One is what we’re referring to as the evidence pay wall, so that is actually having the financial means to be able to get the required evidence.” If someone does not fit neatly into a box, the burden gets heavier fast. “There was still going to be a minimum, several thousand dollars up until the tens of thousands. We’ve had some people require 10 to 15 thousand dollars just for one person.”
The second barrier is just as brutal. “Living a life of severe disability, you’re living day to day,” David says. “And some people, it’s not even living. It’s surviving. You’re just trying to essentially survive to the next day itself.” In that context, even basic admin becomes enormous. He recalls one man who, over several years, had managed to make just one phone call to the NDIA. “That’s all he’d been able to do,” David says. “And he was not a lazy person. In no way.”
This is why Unfunded Lives matters. It is not about helping people who are a little stuck. It is about stepping in where the gap between need and access has become life-threatening.
David does not think this is only a South Burnett problem. Quite the opposite. “If this is the snapshot that we see here locally, you could be safe to presume that would be stretched throughout Australia completely,” he says. He points to the same familiar pattern. The further from cities, the fewer services. The lower the socioeconomic area, the harder it is to gather evidence and hold the line long enough to get through. “There’s plenty of those throughout Australia,” he says. “They’re going to have these people.”
He is blunt about what that means in practice. “It is literally the more money you can afford, the better plans you’ve been able to get,” he says, describing the Scheme as having had “this paywall as a problem from the beginning.”
That is the heart of Unfunded Lives. It exists because there are people who should be on the NDIS, who clearly belong there, but who cannot get there alone. It exists because severe disability, poverty, regional disadvantage and system complexity are a brutal combination. It exists because some lives are being quietly crushed while everyone else assumes the Scheme will catch them eventually.
And it exists because David could not keep looking away. “It’s gut wrenching,” he says. “And it’s hard to see that and to feel a bit helpless at times.”
Unfunded Lives is Meliora’s answer to that helplessness. It is the decision to step in anyway. To do the reports, the appointments, the advocacy, the legwork and the stop-gap care. To keep going even when the system fights for the sake of fighting. To stand beside people until support finally flows, or at least until someone else in the system is forced to see what has been there all along.
