“It’s hard to talk about.”

The man, who required a walking stick for mobility, had come in to community consultations in Alice Springs for a research project led by the First Peoples Disability Network Australia.

“I live at bush … Just around the town area. Just down — [pause] — we’ve got nowhere to sleep,” he said.

He had waited about an hour and twenty minutes to tell his story to policy and research director Scott Avery.

Avery asked him if he had been to a doctor about any health issues.

“At this point the man lifts his trouser, and points to his leg. There is a diagonal bulge covered by a scar which looks to be covering a pin, which is about an inch long and clearly visible. It was quite stark, reminding me of those flat-topped mountains that pop up out of nowhere you can see when you go driving in the outback,” Avery said in his records of the meeting.

As the discussion continued Avery learnt the man, after a significant knee operation, had been discharged from the hospital with no transport arrangements and left to walk back to the bus stop and then on to his campsite.

“At this point, I’m registering that an Australian health care system would discharge a sixty-ish-year-old man from hospital after a significant knee operation into a situation when he is on own his own and sleeping rough,” Avery said.

The prevalence of disability among Aboriginal and Torres Strait Islander people is twice that experienced by other Australians.

To compound the issue, there is often more than one disability or health problem occurring together and that also is compressed within a shorter life expectancy.

Culture is Inclusion is a compilation of both research and the personal accounts of Aboriginal and Torres Strait Islander people with disability.

Avery, a deaf Aboriginal researcher with a background in health, has put together the national narrative which brings to light a world in which people are exposed to social inequality and injustices that most other Australians would never have to endure. Many struggle with basic survival needs.

Avery believes his work shows the National Disability Insurance Scheme (NDIS) has failed to accommodate the unique needs of Aboriginal and Torres Strait Islander people with disability — and it’s not just people falling into obscurity through gaps in the health care system.

Some people in remote NT communities have been given extensive NDIS support packages, worth tens of thousands of dollars, with no way to spend them.

One elder from a remote area in Central Australia said there were people in their community who had received packages valued upwards of $50,000 that they can’t use because there aren’t any services in the community.

“Sometimes we arrive out there, family’s got no food, so we need to be able to get food for people, and that’s something that the NDIS says is not a reasonable or necessary support,” they said to Avery.

“But if you arrive and that family’s got no food, that’s what you’ve got to deal with. You can’t be talking about that physio that’s coming out here in three months’ time or — you’ve got to — it’s totally counterintuitive not to respond to what’s going on for that family that day…

“Because the other thing (our Elders) pointed out to me is swags and blankets is something that our families ask for all the time, help with making sure that they’ve got somewhere warm and safe to sleep at night, and that’s a really practical thing and we’ve done that for years.

“Now the NDIS is coming and they’re saying, ‘no’, they’re saying, ‘we don’t buy swags and blankets for people’. That’s not ‘reasonable or necessary’. But if you’ve got nowhere to sleep, of course swags and blankets are reasonable and necessary, so we’re having — we’ve been having lots of arguments with (the National Disability Insurance Agency) and saying that they need to change the way that they do business.

“In Aboriginal communities, it’s different, and they need to be able to respond to that difference, because otherwise, in five years’ time we’re all going to be sitting at a table saying, ‘The NDIS didn’t help much, did it?’ and we don’t want that. The NDIS is an opportunity and we want to make sure that Aboriginal people can access that opportunity and get the best out of it.”

Avery said this was not an isolated incident.

“I got this on record once but I’ve heard this so many times since,” he said.

He said while proponents of the NDIS could point out the service was designed to operate as an insurance scheme and not as a welfare service, there was a clear disconnect between the Closing the Gap framework and the market-based NDIS scheme.

“They’re saying ‘we are homeless and we are starving’ but the NDIS can’t provide that because they say ‘that’s not reasonable and necessary according to our rules’ but there is no connection to the agencies that could be responsible for that,” he said.

“So the NDIS can go in and make a notional commitment of say $50,000 but it is actually completely worthless to the person, who still remains homeless and who is still starving.

“These are the real oddities that we are uncovering here.”

The NDIS was launched in July 2013 in a number of trial sites, one of which was the Northern Territory’s Barkly Shire. Because of this, Avery focused his research group on this area.

“Because I know that when we are talking, if we are trying to influence how policy is implemented, we kind of need to research within the evidence,” he said.

What the research group found was the implementation of the NDIS had relatively little impact on the lives of the participants in the personal research interviews.

The ‘NDIS’ or related words were referenced in 11 of the 41 interviews, just 26.8 per cent.

In many of the remote communities the group visited, the level of public infrastructure could not facilitate any disability care plan even if one was in place.

“Even some of the health care services that we saw were in place weren’t disability accessible. A lot of the housing that was getting built wasn’t disability accessible. Those kind of structural things need to be in play for your personal plan to work,” he said.

“The parts of government policy that focuses on the indigenous disadvantage side just aren’t talking to the NDIS, there is no connection between the two.”

Second to the issue of infrastructure was the suitability of the disability aids that were provided.

It was rare for the researchers to see a fully functioning wheelchair in any of the remote communities visited.

“For example, I’ve taken this picture of a wheelchair where the rubber tires have melted. That wheelchair that was supplied was designed for an urban environment with flat footpaths and moderate heat. But you take that into a remote community in Central Australia and the heat has melted the tires so it becomes unusable,” Avery said.

“Another example I can give you from Tennant Creek, a couple of roads out from the highway it’s all sealed. We went out a little further and met some people and said ‘do you know of the NDIS?’ And they go ‘you’re the first people who have come and talked to us.’

“They are just a couple of kilometres from town but they said ‘we try not to go into town very often because we have wheelchairs and, look at our roads, if we keep going into town our wheelchairs will break and then we’ll be screwed.

“Something as arbitrary as one road being sealed, and one road not, making such a different between if someone gets on an NDIS plan, that’s how fickle the system is at the moment.

“Just the number incidents of that kind of stuff, really practical impediments to people participating in all these other activities, leaves you just going ‘wow’.”

The team observed, in some of the remote communities, a graveyard of discarded wheelchairs was the only outwardly visible sign that people with mobility impairment were living there and that those reliant on them for mobility had been left isolated within their own homes.

On top of these obstacles, Avery said there was a blatant mistrust of government and health services.

“They are very fearful, particularly when children are involved and with what happens to their children,” he said.

“So there are these structural things, like if a road is sealed or not, plus this mistrust, plus you get some places where they don’t have a disability diagnosis.”

Avery said he had experienced this first-hand.

“Another personal story that I have that is really fascinating is that when I went to some remote communities, and I wear a cochlear implant, they were a bit stand-offish,” he said.

“Then I figured out that they hadn’t seen a cochlear implant before and it just struck me, because they thought I was a cop.

“I was meeting with severely and profoundly deaf people and finding a way to communicate but they didn’t have cochlear implants.

“That health technology hadn’t made it into the community but they were straight all over the cop stuff.”

A Federal Government’s Department of Social Services spokeswoman did not directly address questions in regards to what was deemed “reasonable or necessary” or whether there had been any oversights during the rollout of the NDIS in remote Aboriginal communities.

However, she did indicate more had been done in recent months to address the issues discussed in Avery’s research.

“The Government is funding initiatives to boost the workforce and enhance the capability of indigenous community controlled organisations to deliver culturally appropriate services to indigenous NDIS participants. These include co-creating community plans in remote communities in the NT, to help better identify needs and direct necessary services to these areas,” she said.

She said two regional co-ordinators had recently started in Darwin and Alice Springs and specialist co-ordinators were also being appointed to focus on encouraging more indigenous controlled organisations to register as NDIS providers.

Increased indigenous investment into the scheme could be a good start, as Avery said there were already plenty of indigenous carers in community putting in the hard work.

“Our organisation has been travelling around the Northern Territory for some time and what we know is that there are really strong community connections,” he said.

The one exception found in the levels of disadvantage experienced by Aboriginal and Torres Strait Islander people with disability was their inclusion within their own communities.

They still enjoyed social and cultural activities at the same participation rate as Aboriginal and Torres Strait Islander people without disability.

The final report stated this finding was an expression of a culture of inclusion in Aboriginal communities that had survived despite other disruptive influences.

A National Disability Insurance Agency spokesman (the agency which implements NDIS nationally) said because the scheme was the biggest overhaul since the introduction of Medicare in the 1970s it was “not unreasonable” there would be “a different experience in rural and remote communities, compared to other areas”.

“These are not unknown challenges for government services more generally,” he said.

The NDIS became fully operational in the Northern Territory on July 1 this year.

As at 30 June, there were 843 NDIS participants in the Territory and 77.5 per cent of these participants identified as Aboriginal and Torres Strait Islander.

But Avery found most government departments had put the issues of remote service delivery in the “too hard basket”.

“I think the frustration that we have as an Aboriginal disability organisation is that the story was not widely known, it was kind of like this hidden story. We kind of knew what to expect but even, personally, when I went out there and when you see it with your own eyes it has quite an impact on you,” he said.

“The story that I keep going back to with that gentleman who had that knee operation and who was discharged into homelessness, I just sit back and go ‘how on earth is this happening in Australia?’

“That one experience I’ve given, you could multiply that by many many times to reflect the population, which is really isolated and marginalised. It’s not just one or two people it is a whole cohort of people. It’s a systemic problem and it comes down to how committed are you?

“These problems can be easy or hard. It sounds complex when you’ve got all these issues but we broke it down. We started with asking the person, what is your story? We gave them a degree of dignity and respect in which they could tell it and that even that has made a difference in itself.”