NDIS review process like Groundhog Day

The NDIS review process is long and baffling for participants, but for lawyers fighting on their behalf it’s a version of Groundhog Day as battles won fail to set precedents. Kylie Stevenson and Tamara Howie report.

Catherine Fielke’s son Mitchell, 3, needs intensive therapies for his Autism and Global Developmental Delay. The Fielke family were travelling from their home in Nhulunbuy to Sydney at $6000 per trip for Mitchell’s treatment, and had to fight for the NDIS to assist with travel costs. Photo: Tamara Howie.

David McGinlay doesn’t mind an argument. For the police officer-turned-lawyer, conflict comes with the territory.

He once spent five months in Iraq training their National Police, where the truck convoy he was travelling in, as well as the base he lived and worked at, were attacked.

But none of his experiences prepared him for the ongoing battles he would face as the Manager for Seniors and Disability Rights Services at Darwin Community Legal Service, where a lot of his work involves appeals advocacy for clients navigating the National Disability Insurance Scheme.

Since he took on the role 18 months ago, MGinlay’s work days have become a version of Groundhog Day, where he repeatedly fights the same battles with the National Disability Insurance Agency (NDIA), which administers the system, while his clients are left in limbo, waiting for decisions on access and funding.

“The biggest impact is on children — it can take the NDIA 12 months to make a decision and that impacts on children’s development — these are things they need now, not in 12 months’ time,” McGinlay says.

Part of the reason for the long delays, he says, is that the NDIA will fight him on applications but usually resolves cases before they reach the Administrative Appeals Tribunal. This means no reasons for a decision are published and no precedent is set.

It means McGinlay has to go through the same process for each client, even if they have a similar condition and set of circumstances.

“It’s frustrating, putting forward the same argument over and over,” he says.

“Recently, I had one young boy get accepted in the same week that another, with the same condition, was rejected on exactly the same basis and the same section of the legislation.

“We used exactly the same argument, same research, quoted the same case law and sections of the Act and Rules, and yet one is in and one is out. How can that be a fair process to all applicants?

“I often hope they would reject us all the way to the Federal Court, but they are smart about what they do.

“They know the Federal Court is a precedent jurisdiction and it’s best for them to stay away from it.”

McGinlay says the problem comes down to rigid checklists that don’t give NDIA decision makers discretion.

A screenshot of a blacked-out FOI document David McGinlay recieved. Image: Kylie Stevenson.

When McGinlay requested a copy of the checklist through freedom of information laws so that he could know what he was up against, he received back pages and pages of blacked out text.

“My first thought was, ‘Have I accidentally got an FOI from the department of defence and asked for some national secret?’” he says.

“I couldn’t believe the NDIA would black out that much information — what are they hiding?”

One of McGinlay’s current appeals involves a family in North East Arnhem Land who requested travel funding for their daughter to receive treatment interstate.

Coreena and Paul Augustin, who are based in Nhulunbuy, have struggled to find appropriate therapies for their six-year-old daughter Emelie, who has Down Syndrome.

The town is home to around 3000 people and health services there took a hit after the Northern Territory Government pulled out services such as occupational therapy when the NDIS was introduced.

“We do miss out. We only get about a quarter of what they recommend,” Coreena says.

Coreena and Paul Augustin with six-year-old daughter Emelie and sons Jacob and James. Photo: Tamara Howie.

Emelie has already been accepted onto the NDIS, but the family has had to fly to Brisbane, at a personal cost of $3000, for specialist intensive speech and occupational therapy.

“We’ve found the right organisation for her and we don’t want to let that go — it gives us peace of mind. We want to hold on to that at all costs,” Coreena says.

Paul and Coreena say the fly-in fly-out service providers they have access to in Nhulunbuy send a different person each time. Often these providers are inexperienced, including one visiting Occupational Therapist who had never even met a child with Down Syndrome before.

“[Having] no continuity is the hardest thing — we are really limited in our choices in therapists coming from Darwin and those who do come don’t meet our child’s individual needs,” Coreena says.

Emelie and Jacob Augustin. Photo: Tamara Howie.

The regularity with which they visit is also a problem, with appointments often cancelled, leaving a long gap between appointments.

“It doesn’t matter how many times they come anyway if they’re not quality,” Paul says.

In August, McGinlay started the process of applying for travel costs through the NDIS for Emelie’s week-long intensive therapies in Brisbane several times a year.

“Don’t expect this to happen this week, it’s not that kind of process,” he told the family back then. “[The NDIA] will say no and then we go back. It could take months.”

In the meantime, Coreena and Paul have stepped into the role of speech therapists, with the help of telepractice appointments.

“We probably wouldn’t go a day without worrying about her and if we’re doing enough. It’s really hard, teaching your own child. I’m not a teacher,” Coreena says.

Filing the paperwork for the appeal was almost a cut-and-paste job — earlier this year McGinlay won a similar case for Catherine and Brad Fielke, who also live in Nhulunbuy, with their two sons Jackson, 6, and Mitchell, 3.

Catherine and Brad Fielke with sons Mitchell and Jackson. Photo: Tamara Howie.

The family had been travelling to Sydney, at a cost of $6000 per trip, for intensive therapies for Mitchell, who has Autism and Global Developmental Delay — a term used when a child is delayed in cognitive and physical development.

The financial strain was beginning to take its toll, and the family considered moving closer to services, but felt there were other things their family would miss out on in a bigger city.

“This is home for us,” Brad says of Nhulunbuy. “This is where we met, we have a small connection of family, it’s where our boys were born.”

Catherine agrees. “Our life is here. There’s so much opportunity for kids to learn different things here. You’re never going to learn to ride a quad bike and go buff hunting in a major city.”

So they requested travel costs be incorporated into Mitchell’s plan.

“Their answer was, ‘We don’t do that for anyone, it’s not something NDIS does’,” Catherine says.

McGinlay says transport funding within the NDIS is designed for people who live in a bigger city who might need public transport or taxis to get around locally — it doesn’t allow for interstate travel and accommodation to see specialists when they aren’t available nearby.

“The NDIS should not be a postcode lottery that disadvantages participants on the basis of where they choose to live,” McGinlay says.

“Clients in Nhulunbuy have the same right to service provision as those in the Sydney CBD and if they can’t get it where they live, then they have the right to travel to get it.”

Just days before they were due to travel to Sydney for therapy again, the Fielkes received approval from the NDIA.

“We were in tears. It was a massive relief,” Brad says.

McGinlay says that, if it weren’t for how urgently Mitchell needed support, he would have pushed the case to the AAT and then the Federal Court as he has other clients, like the Augustins, who would benefit from the decision.

An NDIA spokesperson said the organisation “takes an early resolution approach to AAT appeals where possible”.

Still, McGinlay sees the process, which can take as long as a year and usually involves multiple appeals, as wasting time and money.

“It would have cost them thousands to argue with me,” he says. “The bureaucracy is frustrating.”

McGinlay is also arguing with the NDIA for funding for an 11-year-old, vision-impaired girl in Darwin who needs to travel to Sydney because there are no supports available locally.

“The NDIS rejected her despite agreeing that the supports are not available here, despite agreeing she lives in a regional location and needs the supports,” he says. “They argue her parents are the most appropriate funding source.”

The lengthy and detailed review process means sometimes his clients don’t see it through.

“People do give up. They’ve had enough,” McGinlay says. “I had a mother this week advise she’s done. It’s all too hard.”

The Tune Review, which is looking at the review process and time frames for reviews in the NDIS, is currently under way. It will develop an NDIS Participant Service Guarantee to simplify the process by July 2020. But McGinlay doesn’t hold out much hope.

“They just want to look like they are doing something so when the Disability Royal Commission calls them to appear, they can say look what they’re doing in response to complaints,” he says.

“It’s lip service.”

Kylie Stevenson is a Walkley Award-winning freelance journalist based in Darwin.

Tamara Howie is a Darwin-based journalist, artist and arts producer.

This reporting was funded by the Walkley Public Fund and the Judith Neilson Institute for Journalism and Ideas through a Walkley Grant for Freelance Journalism.

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 online.

--

--

--

Inside the Australia and New Zealand media – stories by and for journalists.

Recommended from Medium

Letters from Inside: Covid-19 and the Carceral State #5

Softening the Edges of Felony Murder

Police Detective Earns 23 Years In Prison

Police detective earns 23 years in prison, Darryl Howard, Darrell Dowdy, Durham, North Carolina, prison cell, murder, DNA evidence, falsifying evidence, police misconduct, casey lane, 6 million, $6 million, Doris Washington, Nishonda Washington, 1991, 1995, 2017, 2020, caseylanewords, medium, medium article, injustice, racism, politically speaking, CRT, crt, systemic racism

Man allegedly poisoned 21 of his coworkers by putting chemicals in their lunches

Investigators See Through California Doctor’s X-Ray Scam

Using A Personal Injury Attorney

INVESTIGATION ON POLICE-VIOLENCE

Derek Chauvin, Manslaughter, and Mayhem

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store
Walkley Foundation

Walkley Foundation

The Walkley Foundation champions the highest standards of journalism in Australia through our awards, events and magazine – join the conversation!

More from Medium

A Coach’s Tribute — Lessons Learned from Coach Sue

My 3 Favorite Tools To Create Content for Patients

How It All Started

How to Gift a Plant

Three cacti planted in a coconut shell with a ribbon attached to the front.