The cracks in a system tasked with helping the nation's most vulnerable are particularly wide in Mitchell Fielke's hometown.

Key points: Only 18 per cent of the 707 service providers registered with the NDIS in the NT are active

Only 18 per cent of the 707 service providers registered with the NDIS in the NT are active This leads to discrepancies between what NDIA decision-makers think is occurring in the NT and the reality on the ground, experts say

This leads to discrepancies between what NDIA decision-makers think is occurring in the NT and the reality on the ground, experts say A Nhulunbuy mother who battled to get her toddler supported by the NDIS says there is something "flawed in the system"

The three-year-old came close to falling through them, which could have forced his whole family to move, and left them thousands of dollars out of pocket.

Although he suffers from autism spectrum disorder (ASD) as well as global developmental delay (GDD) — for which early intervention is critical to treat — two separate applications to the National Disability Insurance Agency (NDIA) were initially rejected.

This could have been due to an emerging problem — less than one-fifth of those who claim to provide services under the National Disability Insurance Scheme (NDIS) in the Territory are active.

Darwin Community Legal Service lawyer David McGinlay said this could see participants who need to travel to access support services denied funding to pay for those travel costs, because the NDIA mistakenly believed they should be available locally.

While a three-month review process recently saw Mitchell's rejected application for travel costs overturned, Mr McGinlay said the hurdles faced by his family were typical of those met by NDIS participants in far-flung reaches of the Top End, where some say the scheme is simply not working.

'I was in disbelief'

The Northern Territory town of Nhulunbuy lies on the shores of the Arafura Sea, 1,000 kilometres east of Darwin.

Among its 3,200 residents are Cath and Brad Fielke, who had been there for 15 years when their youngest son Mitchell was diagnosed with GDD and autism in 2017.

Mitchell Fielke now has a plan with the NDIS. ( Supplied: Catherine Fielke )

While the town provides mining work and a strong support network of friends, it doesn't have much in the way of specialised speech, occupational and physical therapists.

Although there are local and visiting locum providers, who each cost from $90-$250 a session, they didn't provide the intensive, paediatric treatment the toddler needed.

So Mitchell's initial rejection from the NDIS in 2017 came as a crushing blow.

"On the day that I got the rejection I broke down," Ms Fielke said.

"I was in disbelief, I was in shock that they had said no. They just said he didn't meet the criteria of the requirements."

But with the help of some "angels" from Nhulunbuy's Office of Disability, the NDIA then accepted their application on review.

However, it didn't include travel costs — leaving them $6,500 out of pocket from flights and accommodation on one trip to see a specialist in Sydney.

When another application to the NDIA for travel costs was rejected in October last year, Ms Fielke thought they may have to move.

"We definitely considered having to leave," Ms Fielke said.

"But my husband is in mining and there's not a lot of mining in cities — so I guess our options were to move somewhere so we could be closer, one flight away.

"It just really upset me to think that was my only choice."

She also believed living in a small community was one of the main things that got her past the hurdles that comes with raising a disabled child, as locals knew her situation and were quick to suggest support mechanisms.

Thankfully, another review of the decision compiled by Darwin Community Legal Service's David McGinlay and which took three months to process, has now secured travel costs to Sydney for Mitchell and Ms Fielke three times a year.

Mitchell Fielke's hometown of Nhulunbuy is 1,000 kilometres east of Darwin. ( Flickr: John Benwell )

'It's a false economy'

Mr McGinlay believes the NDIA's method of assessing available service providers — such as speech therapists or physiotherapists — frequently disadvantages Territorians.

He said this discrepancy was created by service providers who told the NDIA they operated in the Territory, when really, they were based interstate and had no NT offices or staff.

In fact, data from a recent report shows that only 18 per cent of the 707 registered providers in the Northern Territory are active.

Mr McGinlay said many were registering simply to test the market.

But he said that led to massive problems, particularly when reimbursements for travel costs were refused because the NDIA believed a person should be able to access a service locally, when they actually could not.

Mr McGinlay believed the NDIA could fix the problem by setting a threshold — that a service provider had to have offices or employees in the Territory for it to register there, for example.

"The NDIA needs to have stricter guidelines in relation to who can be identified as a provider of service," he said.

"Because if the NDIA say, 'look, we have 16 providers willing to provide occupational therapy' as an example, when in actual fact, only half of those are actually within the NT and able to provide that service, that's giving a false impression as to how the service is being provided with support services.

"It's a false economy."

When this idea was put to the NDIA, they pointed out the new independent NDIS Quality and Safeguards Commission, designed to improve the quality and support of its services, would roll out in the Territory in July this year.

This commission would be responsible for the regulation and registration of NDIS providers.

"The NDIA will actively monitor and analyse the growth of the disability services market, and where necessary intervene, to help all NDIS participants access quality support services, regardless of where they live," an NDIA spokesperson said.

Darwin Community Legal Centre NDIS appeals project worker David McGinlay said there should be a timeframe placed on NDIS reviews. ( ABC News )

NDIS 'not working' in remote areas

Mr McGinlay said another major frustration was that review processes were not subjected to any timeframes, meaning it could take up to nine months for the NDIA to make decisions.

He said this was particularly infuriating when time was of the essence, for example, in cases involving children who required early intervention.

Asked whether the NDIS was providing an overall benefit to Territory clients, Mr McGinlay said it "depends where you live".

"If you live in Darwin, there's a good chance that you will be happy with your plan," he said.

"If you live in Nhulunbuy, remote east Arnhem, there's a good chance that you're not getting the services that you need."

National Disability Services is the peak body for disability service organisations, and its NT manager Susan Burns said while there were some NDIS success stories in the Territory, it was not working in remote areas.

"Unfortunately I think the model is not working remote," she said.

"It's a tough scheme to implement remote due to lack of flexibility within the funding.

"In terms of how it's going I think that the NT NDIA staff are really trying to make it work under the provisions that they're given but I do think that we need to transfer to a more flexible model of delivery."

When approached for comment, an NDIA spokesperson said delivering a "ground-breaking" scheme like the NDIS will be a "different experience" in rural and remote communities, compared to others.

Mitchell Fielke will now be able to receive intensive therapy in Sydney. ( Supplied: Catherine Fielke )

Something 'flawed in the system'

This month, Ms Fielke and Mitchell will set off for a two-week trip to see an intensive physiotherapist in Sydney, where Mitchell will learn how to use play equipment.

"The outcome we want [is] that he is happier and gets to learn along the way," Ms Fielke said.

"He's really good, he's a happy boy.

"I'm just so blessed that he is just so cool about everything."

While she said she would be eternally grateful to the NDIA for finally coming to the party, she said the experience had left her feeling there was something inherently "flawed in the system".

"There should be some other formalised way of reaching out to parents and actually seeing the kids to be able to understand a little bit more about what people are going through," she said.