NDIS akin to a 'Byzantine maze' for frustrated families having to go without funding for months

A small user error caused Becki Greene’s NDIS funding to stop for months. (ABC Ballarat: Laura Mayers)

While each of their stories is different, the results are frustratingly similar — dealing with the National Disability Insurance Agency (NDIA) has driven some of the most vulnerable people in our society to the brink.

Becki Greene’s experiences left her in tears “many, many times”.

Thusitha Nugagahakumbura was injured in a racially motivated assault, but the funding to care for his daughter ran out, despite their needs increasing because he couldn’t do as much to help her.

Angela Cricelli’s brother’s carers had to go unpaid for months, even after many phone calls.

These are the people who the National Disability Insurance Scheme (NDIS) is responsible for helping to access essential services.

Becki’s story

In the Victorian city of Ballarat, Becki Greene managed her multiple sclerosis (MS) with an NDIS plan that included funding for therapies, food and services.

Ms Greene frequently uses a wheelchair but is not reliant on it, and the therapies help to keep her mobile and independent.

But after a simple user error while on the NDIS app, Ms Greene’s payments were stopped without notice and things turned dire.

Ms Greene said she spent hours on the phone, being transferred from one department to another, only to be hung up on multiple times.

“I’ve bawled my eyes out on many, many occasions, because it’s just become so frustrating,” she said.

“Why can’t I just sort this out over a five-minute phone call, instead of four weeks of phone calls and emails?”

The error forced Ms Greene to use her life savings on the essential therapies ordinarily covered by the scheme, and she had to ditch some services that help her remain comfortable day to day.

“My issue is solved but I don’t know how … nobody got back to me — not the NDIA, not [NDIS Minister] Bill Shorten’s office, not the complaints office,” she said.

“My invoices were ultimately paid but I don’t know how or why.”

A performance report from the NDIS says 61 per cent of complaints handled in the September 2023 quarter were completed within 21 days.

Ms Greene said that was not good enough.

“That is too long for participants to go without services or have to pay out of their own pocket,” she said.

It took almost four months for Ms Greene’s situation to be resolved.

The National Disability Insurance Agency has been contacted for comment.

‘Big backlog’

Karen, who has asked to remain anonymous, is a support coordinator for NDIS participants.

She said it was common to see families or participants lose funding due to the complexity of the system.

“The process at the moment is really slow — there is a big backlog,” Karen said.

“The NDIS has implemented a new computer system and it means that emails don’t even get seen for weeks or months.

“I’ve even been told that if they don’t get looked at in a timely manner, they just drop out.”

She said there was a disconnect between the NDIS and the people who needed it.

“I think one of the big issues is the delegates are usually quite remote from the participants,” Karen said.

“They don’t get to meet them, or talk to them. They are basing what is needed for them off reports.”

Angela and Jeremy’s story

Angela Cricelli adores her 50-year-old brother Jeremy, who requires a dedicated team of carers.

He has complex mental health needs, epilepsy, and diabetes, and has been in and out of share homes over the years.

His best option now is to live in a private rental in Creswick, near Ballarat, with seven support workers caring for him in shifts.

“He is very vulnerable. He can’t be left alone,” Ms Cricelli said.

Jeremy’s dedicated team of carers worked without pay for months after the NDIS funding ran out.

“We had a review of the plan — nothing changed, it just rolled over … with the same amount of funding [despite his change in living circumstances],” Ms Cricelli said.

“We lodged a change of circumstance [application] with the NDIS and we never heard anything.

“We followed up at the 21-day mark, then the 28-day mark, and then even two months later … then his funding expired.”

Ms Cricelli said she spent countless hours on the phone to the NDIA, just like Becki Greene.

With a young child and a full-time job, she said she has experienced carer burnout, exhaustion, anxiety and frustration.

But it’s not her own health she is concerned about.

“All they have to do is see my brother,” Ms Cricelli said.

“It’s clear he needs help and support. It feels like no-one listens.

“The vulnerable people are suffering, and it’s not fair.”

In March, Ms Cricelli heard back from an NDIA worker who approved her brother for a renewed plan.

Now, four months after it was lodged, the plan includes additional funding for round-the-clock carers.

Ms Cricelli said she was relieved, but that it shouldn’t take months of phone calls, emails, and administrative headaches to resolve the issue.

The care workers will receive backpay for their unpaid work.

‘Byzantine maze’

Mental health carer and advocate Mary Hollick, who is a member of the Ballarat Mental Health Carers Circle, described the NDIS as a “catastrophe”.

“When a plan, or the funding for a plan runs out, staff disappear — it’s fairly transactional,” Dr Hollick said.

She implored family members or loved ones to speak to local area support coordinators when navigating the NDIS, but was derisive when she spoke of this reality.

“I know there are people with great capacity to manage their own plans, they don’t want much interference,” she said.

“But the truth is, for the bulk of people, this is not appropriate.

“It has been catastrophic to see the atomisation by a legal and bookkeeping mentality that has broken all the services up, costed them individually, and then expected families with no training to put it together.

“It really speaks to the Byzantine maze of the NDIS, which family members are not trained or supported to understand.”

Thusitha’s story

Thusitha Nugagahakumbura and his wife Neelanthi Munasinghe were visiting Ballarat with their family in late 2023 when Mr Nugagahakumbura was injured in a racially motivated attack.

It was a rare outing for the family, whose daughter Anuli lives with cerebral palsy, is non-verbal and blind.

The assault left the family shaken, and Mr Nugagahakumbura suffered injuries he is still recovering from.

He and his wife are the primary caregivers for their daughter, with the NDIS funding a carer to assist on occasions, but Mr Nugagahakumbura’s injuries mean they needed to hire additional support through their NDIS funding to care for Anuli.

The Sri Lankan immigrant said the family informed their local area coordinator of the situation, requesting the previous plan and funding be continued.

“The coordinator didn’t want to go with a rollover, but with a renewal,” Mr Nugagahakumbura explained.

A renewal meant the family would have to go through multiple appointments and phone calls, provide medical documentation to the coordinator, and potentially wait for two months for approval.

In the meantime, their funding was due to run out.

The family also contacted NDIS Minister Bill Shorten for help.

Their situation has been resolved and they were ultimately approved for an NDIS plan that would help with the higher costs incurred by the family, but the delays took a toll.

“We had some kind of a good feeling about Australia, and the support we [were] getting … we are so grateful for that … [but] now, we have lost the trust in the system.”

Mr Shorten was contacted for comment on multiple occasions, but did not respond to the ABC.