‘I’m the tip of the iceberg…’
Charleene Mundine has three children. Her eldest has just completed a master’s degree and has been accepted into the Indigenous arts leadership program at one of the country’s top public galleries.
Her younger two children have autism.
Mundine acknowledges it’s a fair load for a single mother. But she is resilient and doesn’t seek any sympathy. She has strong support from her extended family and says others have it a lot harder. However, she worries about the future.
“It’s ongoing,” she tells The Saturday Paper. “It’s definitely challenging. When you especially look at my son, I know it’s never going to end. What happens when I pass away? Whether it’s today, tomorrow or when I’m 80 – I’m worried about the burden it passes on to his sisters. I try not to think about their disability. I try to just treat them normally… We know life is not going to be easy. Their disability means life is always going to be challenging.”
Mundine’s son, who is at the acute end of the spectrum, is in year 10 and attends a special-needs class at his local public high school in south-western Sydney.
His creativity often surprises his mother, particularly his drawing, but he struggles with regular conversation and sometimes with basic speech.
His intellectual development is delayed, he experiences severe anxiety and he hates getting dirty. A keen video gamer, he also collects Yu-Gi-Oh! trading cards and is proficient at Lego construction. He thinks he has no friends – a perception that reflects the challenges he wrangles daily.
His 12-year-old sister’s diagnosis is more moderate. She is a talker – “underwater with a mouth full of marbles”, her mum says – and can be focused to the point of obsession.
Both children are highly sensitive to stimuli and don’t sleep much. Their regular “meltdowns” can trigger each other.
For Mundine, and thousands of families like hers, the advent of the National Disability Insurance Scheme put extra help within financial reach.
Three years into her children’s participation, she sees the benefits of consistent support – and the setbacks when it’s not available.
Both children have therapy involving assistance dogs to help them learn about emotional responses, and counselling to address anxiety.
Her son has travel assistance training to help him learn to catch public transport and community access sessions to learn other independence skills, such as shopping.
He also has speech therapy.
“He seems to regress when he doesn’t have that,” Mundine says.
The various therapies cost between $80 and $180 a session. Their plans also fund medical aids and some technological support to help with communications.
Over the past few months, Mundine and her children have been caught in an administrative maze that demonstrates some of the ongoing problems with the NDIS rollout.
She is just one of many encountering inexplicable and highly concerning problems with the system.
Mundine was left thousands of dollars out of pocket when money in her daughter’s yearly plan ran out, despite her meticulous advance budgeting.
How this happened remains a mystery to her, as she says she hasn’t been able to see all the invoices.
After the trouble with her daughter’s NDIS plan, Mundine decided to switch to a new plan manager for both her children. But the old managers told her the agreement with them was “perpetual” – something that confused her as she believed she was required to sign a new agreement every year and had followed the notification procedure for changing.
The Saturday Paper understands that all the company’s contracts were perpetual or “rollover” contracts, but clients could opt out at any time with 30 days’ notice.
Mundine persisted with disengaging the company in August this year, but says she was told it was still assigned to her son’s account and was paying outstanding invoices after the new plan began. She says $6500 from his new plan was used. Whether the money paid for services provided in the previous year or this one – or across both – is unclear.
With her newly appointed plan manager locked out of the system, her children’s therapy had to cease for a month.
Only on Wednesday night, after The Saturday Paper lodged questions with the National Disability Insurance Agency, was Mundine told her son’s new plan officially started on July 24, almost two weeks earlier than it was due to reset.
It now appears the NDIS brought forward the new plan’s commencement date from August 4 to July 24 – without notifying Mundine – meaning any services provided after that date were funded under the new plan.
It is not clear if this fully explains the confusion over the $6500 in paid invoices or not.
Mundine’s former plan manager has declined to respond because the issue is now subject to an investigation, as the NDIA indicated this week.
Starting in August, Mundine’s complaints to the relevant agencies went nowhere. Records of telephone complaints were lost; officers from the NDIS and NDIA sent her back and forth between them.
She went to her local MP, Labor’s Dr Mike Freelander – previously her children’s paediatrician – and he took up her cause. But his office told her earlier this week that it had still received neither an explanation nor a resolution.
On September 20, Mundine received a letter from the Victorian branch of the NDIS’s complaints network – she was unsure why it came from Victoria as she lives in New South Wales – acknowledging her concerns and promising to take them up, though warning it would take “a few weeks”. There was silence for the next two months, until The Saturday Paper started asking questions this week.
Inquiries in the disability community reveal Mundine’s situation is not an isolated case.
“I actually think mine is the tip of the iceberg, to be honest,” she says.
The Saturday Paper has been contacted by others indicating they, too, have had serious practical problems with the system – obstructive or poorly trained plan managers and co-ordinators, out-of-pocket costs, arbitrary changes to their plans’ start and end dates without warning, long delays and unresponsive agency representatives.
Having funds from new plans used to pay old plans’ bills is also a recurring complaint.
At the National Press Club last week, unveiling his plan for completing the NDIS rollout, NDIS Minister Stuart Robert described the scheme as “a world first, a truly national endeavour that is changing lives”.
“But the government is under no illusions – the journey of rolling out this national endeavour has not and will not always be easy,” Robert said. “The image of a plane taking off while still being built remains an apt description. I have frequently said we are about 80 per cent there, with 20 per cent left to go. And the last 20 per cent is often the hardest.”
Robert confirmed that young men with autism accounted for about 30 per cent of the scheme.
The Saturday Paper lodged questions with both the NDIS and NDIA on Tuesday and Wednesday this week about Mundine’s situation and the issues it raised.
On Wednesday evening, Mundine received a call from the NDIA asking her to forward invoices for her out-of-pocket expenses and any others that are unpaid, indicating they would be paid.
She had previously been told she would not be reimbursed for anything she had paid outside the plan.
The official said the rest of her complaint was being investigated.
The question of whether or not this year’s funds were used to pay last year’s bills is yet to be resolved.
At the end of every annual plan, the NDIS system automatically retrieves leftover funds in a participant’s account – whether they are due to be used to pay already delivered services or not.
This appears to be adding to the confusion and has prompted many participants – and some other stakeholders – to urge the government to stop the automatic retrieval.
Participants unable to access services by a particular date are losing access to their allocated funds under the retrieval system.
A review of the whole system is under way with the minister due to receive a report next month, prepared by former senior bureaucrat David Tune.
In a written response to The Saturday Paper on Thursday afternoon, the NDIA confirmed that plan funds could be used only for services booked during the current plan period.
An NDIA spokesperson confirmed that participants could choose to change providers, including plan managers, by contacting their local area co-ordinator or the NDIA.
“And in this instance, the Mundine family has done so,” they said. The response did not address Mundine’s other complaints.
“The Agency apologises for any difficulties the family has had during the period of moving to a new plan manager,” the spokesperson said.
A spokesperson for the NDIS Quality and Safeguards Commission said all providers were regulated and had to comply with the NDIS code of conduct, and meet registration conditions and practice standards.
They said the September response letter had come from Victoria because the commission’s state offices shared the workload.
“We apologise for the delay and will contact the complainant with an update,” the spokesperson said.
Mundine says she decided to speak out because others were experiencing similar issues and some were in a worse situation.
“This has been pretty bad for us, but if I’m the tip of the iceberg, what’s it like for other people?” she asks.
Another mother of a severely autistic son from Brisbane tells The Saturday Paper she had received dismissive responses from her agency planner despite “an inch of paperwork” to support her requests.
She says agency officials then wanted to review her son’s annual plan months before it was due to finish and then end the old and start the new without warning.
She says the review process affected her son. “He’s gone months without therapy because the money has gone on the therapist writing the report in the right way so we can get the money for next year,” she says.
Another mother from coastal Victoria says her plan drafter rejected the medical documentation supporting her request for assistance for her acutely autistic son whose condition leads him to eat non-food items, often dangerously. After an unsatisfactory review and delays, she was told to go to the Administrative Appeals Tribunal.
A young Melbourne woman with extremely complex needs was left out of pocket because of unpaid invoices.
“We had a collection agency contacting a girl with Down syndrome demanding money,” her support person says.
A 48-year-old man from Picton, south-west of Sydney, says he had to lodge special requests to have old bills paid.
“If you are a disabled person that has low cognitive ability and has no one to help them through [the] planning process, it is feeding them to the wolves,” he says. “In saying that, NDIS has been life-changing for me in a positive way.”
The director of policy and advocacy for People with Disability Australia, Romola Hollywood, told The Saturday Paper that people were being “bounced around the system” because of its structure and staffing.
“The goals and visions of the NDIS are still robust and absolutely supported, not only by People with Disability but out in the broader community as well,” Hollywood said.
“The challenge – and what we’ve seen is … the NDIA operating with quite a significant staffing cap, and we’ve been calling for many years for the staff cap to be fully removed so the NDIA can employ the staff and train the staff [it needs].”
Last week, Stuart Robert said there was now a zero waiting time for initial access to the scheme. But his assurance did not extend to dealing with complaints and resolving problems.
The volume of complaints is reflected in at least one of the mechanisms in place to address them. The NDIS has established a Members’ and Senators’ Contact Office to handle just those complaints coming through MPs’ offices.
Romola Hollywood said resolutions are still taking too long.
“These are children who deserve access to services,” she said of the Mundine family situation. “This should not be happening and complaints should be dealt with expediently.”
Mundine agrees. While she supports the concept of the NDIS, she is concerned about how it is being managed.
“You do get worn down by it. Literally, I’m exhausted,” she says. “… I’m fighting to get my kids access to something that should be so simple.”
It seems public pressure gets results. With the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability now under way, the government may need to brace for more of it.
This article was first published in the print edition of The Saturday Paper on Nov 23, 2019 as "‘I’m the tip of the iceberg…’". Subscribe here.