Is the National Disability Insurance Scheme failing Australians living in remote communities?

by | Oct 11, 2020 | News | 0 comments

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NDIS participant Gabriel, 3, plays on the beach on Elcho Island. Photo: Tamara Howie.

Editor’s note: Reporters Kylie Stevenson and Tamara Howie were nominated in two NT Media award categories for this piece that was first published on November 5, 2019. Darwin Community Legal Service’s NDIS Appeals Advocate David McGinlay mentioned in this article has left his position.

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 30 degrees. 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 a blue-framed, white-sheeted 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.

“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 hunting is an important part of life and culture, something the locals love to do. But it’s also 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.

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Rex Munungurr’s mobility scooter with a $200 sun shade. Photo: Tamara Howie.

Months earlier, about 4000km 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.”

McGinlay says the problem is 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 that NDIS plans for those living in the NT 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. Now, some decisions are made locally, but McGinlay says that is not consistently the case — access requests, appeals and reviews still often go interstate.

“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, 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 supports a person would need to achieve them, alongside the participant’s health needs.

The biggest health care 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 $4.6 billion underspend.

NDIS shadow minister Bill Shorten recently described the scheme as “constipated”, and disputed 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.

First People’s Disability Network (FPDN) Deputy CEO June Riemer agrees. She says an initial report 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 per cent of NDIS participants identify as Aboriginal or Torres Strait Islander. Nationally, the figure sits at 7.3 per cent.

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 was going to work for them. A subsequent trial around Tennant Creek in the Barkly region, in 2014, highlighted many potential problems, and advocates say these issues are yet to be addressed.

“It’s not like we haven’t been talking about this for a long time,” she says. “Our conversation doesn’t change. It hasn’t changed since the inception. 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?”

“When he was a little one, he could walk down there on the beach,” Djayak says of Rex, who he is a carer for. “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 housework — 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. Djayak asks hopefully if there is a cure for his brother Mithili.

Neither is ‘disability’ a word they use — 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. Nationally, there are more than 150 Indigenous languages spoken at home. For many, English is a second, third or fourth language.

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 to understand the scheme.

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

“It’s an individual approach and Aboriginal communities come from a collective or family approach, where what’s mine is yours,” she says.

“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.

“For example, if someone lives in a metropolitan region — like our Prime Minister says, the quiet Australians, the middle Australians — they have the education to understand what a physiotherapist is, or a speech pathologist is. But unless you’ve had that education and that capacity building to understand the benefits, why would you know any different?”

A physio appointment is not always a priority, according to advocates, who say people in some remote communities live in extreme poverty and don’t have access to basic necessities including food, clean water and adequate housing.

Health inequality in remote Northern Territory is extreme compared to the rest of the country. In the NT, the life expectancy for Indigenous compared to 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.

“Not everyone needs hot water, but people with disability can be more susceptible to health conditions,” Gillett says. “We’re shortening life spans by not giving people access to services. There is a disconnect between the NDIS and what’s on the ground here.”

Advocates say there is also a gap in understanding as to what participants in remote communities want from the NDIS. For many, the goal will likely revolve around 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 okay to use here in the bush,” says his carer, Djayak. He points to the skeleton of a $6,000 manual “beach” wheelchair which didn’t last long in the harsh conditions and failed to give Rex the independence to go anywhere on his own. Its inflatable wheels are in Yirrkala, awaiting repair.

His current wheelchair is a basic manual model that requires Djayak to push Rex everywhere, including across the few metres of bare earth and tree roots to their outdoor toilet and shower. Rex has an electric scooter — the one with the sunshade — 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 that will meet all his needs.

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

Advocates say there are often long delays for specialised equipment, partly because the NDIA requires participants to trial it to prove its benefits. For people in remote areas, this means travelling to a city where the equipment is available.

“It makes it hard when they apply these national practices that don’t fit these remote models — we don’t have everything that’s required,” Gillett says.

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.

In Tennant Creek, Adrian Calyun says the NDIS provided him with an electric wheelchair, but there’s no one there to do repairs when it breaks down — which happens often because it’s not built for outback terrain.

“There aren’t footpaths here and the bumps in the road can cause the smart-drive engine to stop. It’s not really good enough for a lot of things, things are breaking apart,” he says. “I know we’re a distance from where they do these repairs, but we shouldn’t be forgotten.”

Calyun has taken to doing most of the repairs himself. He says that for every win he has with sourcing equipment — a shower chair, hand controls for his car — there are losses: a reclining chair that no one bothered to check would fit through his front door; an ongoing two-year wait for kitchen modifications; and an even longer wait for a customised cushion for his wheelchair.

“It’s like getting the dessert instead of the main meal,” he says. “When the NDIS started, I thought, ‘oh good, I can achieve a few goals’. Now, my faith or trust in the system is done.”

But not everyone has lost faith.

The four-wheel drive bus purchased by Miwatj to service its NDIS clients on Elcho Island. Photo: Tamara Howie.

Off the north coast of Arnhem Land at Elcho Island, Lyall Braun drives a 4WD mini bus out of the main town of Galiwin’ku. After about an hour of red dust and corrugations, he slows to turn down a track so little used that branches scrape the vehicle’s ‘I love the NDIS’ stickers in teeth-gritting screeches.

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

Serina Gondarra and Lyall Braun wash mud mussels in the ocean on Elcho Island. Photo: Tamara Howie.

“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.

Joeleen Ganambarr cooks mud mussels for lunch with family on Elcho Island. Photo: Tamara Howie.

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. “If their family had a vehicle, these people wouldn’t necessarily get to go hunting anyway, they get put in the too-hard basket and left behind,” Braun says. “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.”

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 come 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 or case management as these aren’t in the price guide.

“We are filling that gap and it takes resources away from other needs.”

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 NDIS, which in the past has owed Laynhapuy up to $150,000.

“No one with a disability in the Homelands will advocate for themselves,” he says. “It’s up to our teams to nominate who might be eligible. Then we have to pay $3000 to get an OT (occupational therapist) to come out and say whether someone can go on the NDIS.

“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.

One woman from an organisation that offers services across the Northern Territory says only larger organisations like hers are able to absorb the costs and pull from other parts of their business while they wait to be reimbursed by the NDIA. She said this would be much more difficult for smaller operators.

“This choice and control is going to end up with a smaller number of larger organisations — then where’s the choice?”

Vanessa Gillet, Rex Munungurr, David McGinlay, and Ted Wanambi. Photo: Tamara Howie.

Acar pulls up outside House 6 in Garrthalala and a woman comes over and introduces herself to Rex. She’s a physiotherapist and after a brief chat she wheels Rex 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.

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 $100 million 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.

She agreed that there was still work to be done for a national model to work effectively in the unique context of the remote Northern Territory and said a remote model could be considered.

The Commonwealth Government is also reducing funding to services. The only full-time professional Auslan interpreter in the Northern Territory recently resigned and will not be replaced. The Government says the NDIS uptake should mean everyone is covered, but advocates say there is not a strong participation rate on the NDIS among the deaf community, and many worry the gap in the market won’t be filled by interstate providers moving north.

Services aren’t moving to East Arnhem Land to fill gaps there either, meaning the nearest OT, speech therapist or pediatrician is 900km away in Darwin. Laynhapuy Homelands’ Vanessa Gillett says getting them to come to remote East Arnhem Land isn’t an easy feat, financially or logistically.

“Most can only come once every six to eight weeks. Every minute of their time including planning, liaison — even phone calls with me — and travel time is charged at the price guide rate, which is now $290.99 per hour for very remote,” she explains.

Along with travel expenses, these costs, rather than a person’s condition, tend to determine how often therapists can visit a person.

“The NDIA puts $2000 transport funding in a client’s plan and that’s supposed to get them to anything they need,” says Gillett.

“It’s $720 return (in a bush taxi) to get from some Homelands to Nhulunbuy and back. If I want to instead take the physio to the Homelands, it’s a full day — and a physio for a day costs us at least $1200. If there’s only one participant to see, it’s not seen as value for money, no matter how much that participant would benefit from it. How do we develop a program for people with Parkinson’s and degenerative conditions?”

Add the specialist’s flight to and from Darwin, accommodation costs in Nhulunbuy and local car hire fees, and the travel costs can be huge.

Gillett connects with other coordinators locally at East Arnhem Regional Council and Anglicare, in order to pool clients and bring down the cost of travel per person. But this is not how the NDIS is designed — for many coordinators and service providers, not splitting costs among clients is financially beneficial.

From July this year, the NDIA introduced significant price increases with remote and very remote price loadings, but the increase in allowances doesn’t make a difference if there are no services.

But it’s not just a matter of cost. Of the 848 NDIS approved providers in the Northern Territory, only 20 per cent of them are active. Many interstate providers have registered here but do not actually have any staff on the ground — they’re testing to see if there’s a market.

One coordinator of support based in the Top End says her organisation has pulled out of several remote communities because it simply cannot find services willing to go there.

“There are a lot of good plans, well-funded plans, but the reality is, there are no services,” she says. “I’m really scratching my head, I can’t get anyone to go there. There are people’s lives at stake.”

The Top End, including North East Arnhem Land, is considered well-serviced in comparison to other areas, particularly Central Australia where health professionals have to be flown in on chartered flights and an OT assessment can cost up to $6000.

Even in Darwin these services are expensive and clients report waiting months for assessments and appointments. Everyone talks about shortages of OTs and speech therapists.

One woman, whose adult son has severe autism, said she was considering moving her family to Perth because she hadn’t been able to access speech therapy for her son since he signed up to the NDIS.

“We had a great speech therapist through the Office of Disability, but only for a few months before it disbanded and NDIS took over. That was two years ago,” the woman says. “Now we have the funds for it, but we can’t get a speech therapist. I’ve only just had the assessment done.”

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Yarns about life by the beach with Djayak, Ted Wanambi and Mithili in Garrthalala. Photo: Tamara Howie.

Yarns about life by the beach with Djayak, Ted Wanambi and Mithili in Garrthalala. Photo: Tamara Howie.

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.

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

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 journalist, artist and arts producer.

Stories and projects funded by the Walkley Grants for Freelance Journalism are published under Creative Commons. This is reporting in the public interest, and we want the stories and projects to reach as wide an audience as possible — so we welcome media organisations to republish these articles for free, so long as they are attributed and not edited. See our republishing guidelines.

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