Djayak Munungurr wheels his brother Rex five metres from their front door to the shade of a poinciana tree overlooking the beach.

It’s 11am, about 30C. Except for the trilling of birds and yipping of camp dogs, it’s unusually silent – most of the 40 people who live here in the East Arnhem Land community of Garrthalala have made the bone-rattling 120km journey to Yirrkala for the footy finals.

Djayak stretches out on single bed next to Rex and points out a spot in front of him where years ago, his late wife watched a crocodile take their puppy, Munbi, from the shoreline.

Rex Munungurr, who has cerebral palsy, in his manual wheelchair. Photograph: Tamara Howie

“She screamed out to me and when I came, the croc was swimming back and forth just along here with the dead dog on its snout,” Djayak says.

This part of north Australia is like that. Beautiful but harsh. The kind of place where if you stick your arm down a goanna hole, you need to hold still in case a king brown comes out.

You need a deep understanding of the land and its people for things to work here.

Months earlier, about 4,000km away in Geelong, Rex’s application for a sunshade for his mobility scooter landed on a desk at the National Disability Insurance Agency (NDIA) headquarters. The NDIA oversees the national disability insurance scheme (NDIS), which provides Rex, who has cerebral palsy, with the scooter. His care plan also includes funding for occupational therapy and physiotherapy.

The application for the $200 sunshade was denied.

“They told us, ‘no, you cannot have it, we will not fund it. This is something that can be funded by him or the community can buy it for him’,” says Darwin Community Legal Service’s NDIS appeals advocate, David McGinlay, who represented Rex.

“It was causing social isolation for him – he wasn’t going out of the house because of the dangers of sun exposure and heat.”

Over the course of the wet season and its build-up, McGinlay received two more rejections before finally negotiating to get Rex his sunshade. The process left a bad taste in McGinlay’s mouth.

“How could a government have so much bureaucracy for a $200 sunshade?” he says. “It would have cost them thousands to argue with me.”

How could people in Geelong make a decision about a guy in East Arnhem Land? David McGinlay

McGinlay says the problem is that the scheme doesn’t acknowledge that Indigenous Australians in remote communities have particular needs due to their culture, environment and isolation.

“How could people in Geelong make a decision about a guy in East Arnhem Land when they have no idea what the community even looks like?” McGinlay says.

An NDIA spokesperson says NDIS plans for those living in the Northern Territory are written and approved by NDIA service delivery teams in the NT, who visit remote communities to meet with participants.

McGinlay counters this is not always the case. He says when the scheme was first introduced all decision-making powers rested interstate, usually at head office in Geelong. Though this has since changed and access decisions are made locally, appeals and reviews, like those dealing with Rex’s request for a sunshade, are still typically assessed interstate.

Darwin Community Legal Service Appeals Advocate David McGinlay says the NDIS doesn’t acknowledge the unique needs of Indigenous Australians in remote communities. Photograph: Tamara Howie

“The NDIS isn’t McDonald’s,” he says. “You can’t have a business model that runs a service Australia-wide, and expect that it’s going to work the same in Sydney as it is in remote Northern Territory.

“This is supposed to be a national scheme that gives everyone the same rights and choices. It’s not a postcode lottery.”

When the NDIS was passed through parliament in 2013, the then-prime minister, Julia Gillard, was brought to tears.

The new scheme moved disability from a medical model to a social model, focusing on social inclusion and personal goals, and on the support a person would need to achieve them, alongside health needs.

The biggest healthcare reform since the introduction of Medicare in 1984, the NDIS promised Australians with disabilities and their carers greater choice and control. Previously, services were accessed through state government health departments. If people didn’t like their service provider, there was no alternative. If they needed to have therapy more regularly than the public system could accommodate, they had to pay for it. The NDIS would create plans and funding allowances tailored to individual needs and goals.

But as the scheme rolled out across the country, its life-changing, empowering potential was quickly overshadowed by bureaucratic bungles, inconsistent support packages, rejected applications, underfunded plans – sometimes written by NDIA employees or contractors with no healthcare background – and, most recently, a $4.6bn underspend.

The NDIS shadow minister, Bill Shorten, recently described the scheme as “constipated”, and disputed the prime minister Scott Morrison’s claim the underspend was due to a lack of demand. “The NDIS is adrift. It’s doing good things but there are too many people missing out,” Shorten said.

The First People’s Disability Network (FPDN) deputy CEO, June Riemer, agrees. She says it was initially predicted 20,000 Aboriginal and Torres Strait Islanders would be eligible for the scheme, but her organisation puts the number at around 60,000. The prevalence of disability in people who identify as Aboriginal and Torres Strait Islander is twice as high as for non-Indigenous Australians.

In the Northern Territory, 52% of NDIS participants identify as Aboriginal or Torres Strait Islander. Nationally, the figure sits at 7.3%.

Numbers aside, Riemer says FPDN flagged eight years ago that the NDIS had to look different for Aboriginal and Torres Strait Islander communities if it were going to work for them. “It’s not like we haven’t been talking about this for a long time,” she says. “But when you don’t even recognise your First Nations in the constitution … why would the service sector give any credit to First Nations people and their culture, if our own government doesn’t?”

***

Laynhapuy Homelands NDIS coordinator of support Vanessa Gillett, Rex Munungurr, Darwin Community Legal Service’s NDIS appeals advocate David McGinlay and Rex’s cousin Ted Wanambi. Photograph: Tamara Howie

Under the tree outside House 6 in Garrthalala, Djayak and Rex are joined by their brother Mithili, who lives next door in House 5. Mithili’s carer – their cousin Ted Wanambi – follows closely behind, a trio of puppies nipping at his ankles.

“When he was a little one, he could walk down there on the beach,” Djayak says of Rex. “His legs were a little bent. As he got older it got worse.”

Djayak also recalls Mithili playing football, soccer, basketball and volleyball before Parkinson’s disease took hold. “He could run, he could manage everything himself, but it’s becoming more and more difficult.”

Djayak and Ted help Rex and Mithili in the way many family carers do – they attend their medical appointments with them, do the washing, cooking and cleaning, and go hunting.

They don’t use the terms “cerebral palsy” and “Parkinson’s”, and can’t say exactly what these conditions mean. Neither do they use the word “disability” – there’s no translation for it in Indigenous languages.

Although Rex and Mithili were among the first people in East Arnhem Land to access the NDIS, when asked what they know of the scheme, the men and their carers look blankly at one another.

“Nothing,” Djayak replies. They talk among themselves in Yolŋu Matha before Djayak says, “Can you please tell us, what does this NDIS stand for?”

In East Arnhem Land, three in four people don’t speak English at home, according to the latest census data. For many, English is a second, third or fourth language.

We’re shortening lifespans by not giving people access to services Vanessa Gillett

Despite offering information in 13 languages on its website, the NDIS has no written material in any First Nations languages. A spokesperson for the NDIA says the agency has plans to translate some products for use on Indigenous radio and in local communities.

In the meantime, Miwatj Health Aboriginal Corporation, based in East Arnhem Land, is developing its own materials in Yolŋu Matha, and many organisations across the Top End are employing remote community connectors who are at least partially funded by the NDIA to bridge language barriers and help participants understand the scheme.

Riemer says the whole concept of the NDIS is fundamentally flawed when it comes to Aboriginal culture.

“If you really were honest about supporting all Australians who have some form of disability, you have to first acknowledge that some Australians are not of an equal capacity.”

Health inequality in remote Northern Territory is extreme compared with the rest of the country. In the NT, the life expectancy for Indigenous compared with non-Indigenous Australians is on average 11.5 years less for men and 12.8 years less for women, according to the Australian Bureau of Statistics. Laynhapuy Homelands NDIS coordinator of support Vanessa Gillett says a client may have $50,000 sitting in their NDIS plan but be unable to afford to feed themselves or pay for power. Many don’t have access to hot water.

“We’re shortening lifespans by not giving people access to services. There is a disconnect between the NDIS and what’s on the ground here,” Gillett says.

Advocates also say there is a gap in understanding about what participants in remote communities want from the NDIS. For many, the goal will likely be staying on country and participating in ceremony, hunting, music and other cultural activities.

For Rex, his main goal is to get down to the beach, just metres from his home, and participate in traditional hunting – collecting oysters, turtle eggs and fishing.

“[His] wheelchair needs to be OK to use here in the bush,” says Djayak. He points to the skeleton of a $6,000 manual “beach” wheelchair that didn’t last long in the harsh conditions. Its inflatable wheels are in Yirrkala, awaiting repair.

His current wheelchair is a basic manual model that requires Djayak to push him everywhere, including to their outdoor toilet and shower. He has an electric scooter but it’s at his other home in Yirrkala, where he spends six months of the year, and doesn’t fit in a bush taxi. He’s applied to the NDIA for a 4WD electric scooter.

Battles for appropriate equipment have been going on for years, even pre-NDIS, in remote communities where skinny rubber tyres on wheelchairs don’t cut it, particularly in the wet season in unpaved communities.

***

Joeleen Ganambarr with her haul of mud mussels. Photograph: Tamara Howie

But there are some success stories. Off the north coast of Arnhem Land at Elcho Island, Lyall Braun drives a 4WD minibus out of the main town of Galiwin’ku. After about an hour of red dust and corrugations, he turns down an overgrown track.

He finally pulls up at a clearing, the bus empties and everyone disappears into the mangroves with their sacks, pillowcases, buckets and knives.

Braun is an outreach worker with Miwatj Aboriginal Corporation and, along with his community connector Serina Gondarra, his job today is to take a handful of his 42 clients and their family members hunting for mud mussels, a practice that’s been handed down to women in the area for generations. The trip is afforded by the “community participation and access activity” funding on the clients’ NDIS plans.

“Most are really excited to come hunting,” Gondarra says. “We’ve been doing it for thousands of years, it’s in our blood.”

Joeleen Ganambarr bends at the hips and works her way through the mangroves, her bare feet squelching in the mud. She spies the rim of a shell and digs her knife into the earth until a palm-sized mussel comes loose. The longbums – cone-shaped mussels – are easier to see in the deep shade and mud of the mangrove forest, and she quickly fills her large white bucket with dinner.

After an hour, Gondarra starts a small fire and everyone throws a few mussels on, using sticks to shift them out of the flames once the shells pop open. The rest will be taken home to feed their families.

Braun says the trip elevates clients’ self-esteem as well as getting them out of the house. “With the bus, they can come out here and get back to country, collect some bush tucker and they start to get a bit of pride in providing for their family,” Braun says.

Cooking mud mussels on the beach on Elcho Island. Photograph: Tamara Howie

Miwatj director Mark Kelly says for all the challenges the NDIS poses in remote communities, this pilot program has been a success that they hope to repeat elsewhere.

“We have to be innovative,” Kelly says. “For us, it’s service over profit, catering for Yolŋu, servicing our people.”

But the NDIS is costing Miwatj money and resources in other ways.

“The NDIS doesn’t recognise that in communities, we are the informal support,” Kelly says.

For example, if a client needs to go to Darwin for respite and their carer isn’t able to join them on return, a Miwatj staff member will accompany them on the flight. The NDIS doesn’t compensate organisations for this kind of informal support.

In Yirrkala, Laynhapuy Homelands, a health organisation that services 30 homelands across East Arnhem Land, is at risk of collapse if it takes on any more NDIS clients.

Health manager Jeff Cook says organisations like his are propping up the scheme. “It’s a big risk for us – we have to pay the bills and get reimbursed by the NDIS. We’re a non-profit organisation.”

Before the NDIS was introduced, only five people in Laynhapuy Homelands were known to the NT Office of Disability. Within months of starting NDIS support coordination services, Laynhapuy had 17 clients on the scheme, and it has identified 35 other potential NDIS participants.

“The motivation to get people on it isn’t great. The more people we have, the more money we lose. If we ended up with 25 people on the NDIS, that might be the end of us,” Cook says.

NDIS participant Gabriel, three, plays on the beach on Elcho Island. Photograph: Tamara Howie

***

A car pulls up outside House 6 in Garrthalala and a woman gets out and introduces herself to Rex. She’s a physiotherapist and after a brief chat she wheels him into his home for a session.

Ideally, Rex would have physio once a week, but the NDIA determined that the $700 travel cost of getting a therapist from Nhulunbuy to Garrthalala weekly wasn’t value for money, even if those travel costs were pooled with other clients, like his brother Mithili. Instead, a physio visits once a month and clients manage their own programs at home in between, along with the option of a gym session in Yirrkala, if they have enough transport funding in their NDIS plan.

Prior to the NDIS the situation wasn’t much better – Cook says a client with severe cerebral palsy was only receiving physio once a year while the NT government was running services.

“But the introduction of the NDIS has meant some of the government health services based in nearby Nhulunbuy, like occupational therapy, no longer exist.

“The NT government pulled out services when the NDIS came in, which meant the area was actually worse off,” he says.

Rex Munungurr’s wheelchair isn’t suitable for the uneven ground. Photograph: Tamara Howie

The Northern Territory’s health minister Natasha Fyles confirms the Office of Disability no longer provides specialist disability services, with a few exceptions, and says the NT government contributes more than $100m annually to the NDIS.

She says her government advocated for strategies to deal with the thin markets in remote and regional areas when the scheme was being developed.

“The NDIS, when it works well, is a fantastic scheme. But we need to make sure we have provisions for those who, through no fault of their own, can’t access services,” Fyles says.

The NDIA also acknowledges the challenges for rural and remote communities and says it will take time to progress the NDIS to full maturity.

***

Moving closer to services might seem like an obvious solution but it’s not an option for everyone. For people in remote homelands like Mithili and Rex, family and cultural ties are strong.

“I love the country, I feel heavy when I am in town,” Mithili says.

In the meantime, Rex has just had the funding approved for his 4WD scooter that will allow him to move independently around his homelands and get him out hunting on the beach in Garrthalala.

Djayak says this will help in achieving what is most important to them: remaining on country.

“We are near the water, the sand, we can hear the birdsong. We communicate, the land to us and us to the land, the birds you hear, we sing it too. The animals, the trees, the sand, the water and on the rocks too,” he says.

“Our name is here. Our fathers are buried here. We just want to be where we’re from, where we belong.”

While people living on country don’t expect the same level of services as those in bigger cities and accept that living remotely comes with certain realities, the dysfunction of the NDIS is making the gap even bigger for people living with disability.

Despite this, FPDN’s June Reimer says there is hope.

“We believe in it, even though we don’t have a lot of good words to say about it,” she says.

“I’ve always said it’s a long journey. Ten years from now we would hope it looks much much different, but there’s still lots of work to be done, particularly remotely.”

Kylie Stevenson is a Walkley Award-winning freelance journalist based in Darwin. Tamara Howie is a Darwin-based journalist, artist and arts producer.



