29,000 South Australians now on NDIS but teething problems persist
About 30,000 South Australians are now signed up to the National Disability Insurance Scheme. But are they — and the nation — getting what they need? Social Policy Editor Lauren Novak investigates.
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Ram Renkuntla is an energetic, cheeky six-year-old who loves to ride his bike and play with his older sister Anika.
But these simple pleasures aren’t taken for granted after a scary start to life.
Ram was born at just under 26 weeks’ gestation with a brain haemorrhage that left him weakened in his left hand and left leg.
The tiny newborn’s mother Devi spent 103 days watching over him at Adelaide’s Women’s and Children’s Hospital. Having migrated to Australia from India, she and husband Harry were terrified of what lay ahead for their son.
“In India if you have a child with a disability it is very hard. You do not have much support,” Devi Renkuntla, 39, says.
But here the family was referred to the National Disability Insurance Scheme, which offered funding for life-changing supports such as physio, occupational and hydro therapies, speech pathology, orthotics and a custom bicycle.
Ram is one of almost 30,000 South Australians who have signed up to the NDIS since it launched in 2013 to better support people with significant and permanent disabilities.
But, six years later, many are questioning whether this expensive scheme – to date $27 billion in taxpayer money has been poured in nationally – is working as hoped.
The Federal Government has acknowledged improvements are needed, recently promising a review to speed up the time it takes to approve new applicants or review cases.
There is also about $4.6 billion intended for the scheme which remains sitting in government coffers because of bottlenecks in the system.
And last month a royal commission into the treatment of people with a disability began hearing evidence – and is sure to expose more issues.
As of June 30, more than 298,800 Australians have used the NDIS, including more than 99,500 who are receiving support for the first time in their lives.
When it was announced in early 2012 authorities estimated about 460,000 would be using the scheme by now but tens of thousands of applicants have come up against delays which have stunted the roll out. The system faces sustained criticism over long wait times for approvals, confusing rules and inconsistencies in how much support is granted and to whom.
Tales of woe regularly surface, such as Adelaide grandmother Patricia Zahra who faced eviction from her care home after repeated attempts to secure NDIS funding to move her elsewhere fell on deaf ears.
It took media inquiries to prompt the National Disability Insurance Agency to act. Many feel teething problems with the system should have been ironed out by now. Others expected a long journey to establish a heaving new bureaucracy.
So are Australians with a disability better off in the era of the NDIS?
Despite some frustrations, 24-year-old Jocelyn Neumueller believes she is.
The Park Holme woman has an acquired disability from an auto-immune disease, which left her with the use of just one arm.
She uses a wheelchair and has a support worker with her “from the time I wake up to the time I go to bed” to help with showering, dressing, preparing food, household tasks and transport. Neumueller transferred from the state-funded Disability SA to the NDIS at the end of 2017 and can now hire her own carers.
“I have choice of who I have coming and when. That is most definitely the highlight of my NDIS experience,” she says, adding she also receives more money for supplies and therapy. “It is all about independence and closing the gap to enable me to live as normal a life as possible in comparison to my peers.”
However, getting to this point has not been smooth sailing.
Neumueller was left to pay out of her own pocket between updates to her funding plan due to processing delays and it took ministerial intervention to gain approval for a new wheelchair.
Part of the problem, she says, is workers assessing applications don’t necessarily have the right training and once an application is lodged it is difficult to keep track.
“It’s like a maze within the organisation at times,” she says.
“Things aren’t being approved in a timely and adequate manner. There’s no way to track where an application is at, or if it will be approved. It should be a lot better than what it is right now.”
The number joining the NDIS grows by tens of thousands nationally every three months. Estimates suggest the call centre is fielding about a million phone calls a year and responding to almost 100,000 emails.
Businesses are springing up all over to meet soaring demand for therapy, equipment and other services.
The number of NDIS providers has skyrocketed to 21,510 around the country, including about 1200 active providers in SA.
But almost all funding is going to a core group of about a quarter of the organisations and, for people living in rural or remote areas there may not be any operators in their town at all, says Disability Advocacy and Complaints Service SA chief executive officer Kendall Field.
One of the early concerns was the potential for the new market to attract so-called cowboy operators looking to cash in on the demand and Field says DACSSA has seen “instances of people taking advantage of this vulnerable cohort when there are business opportunities”.
Difficulty finding reputable services is among the reasons for what is known as the “underspend” of NDIS funding.
Earlier this month it was confirmed that the Federal Budget is benefiting from a $4.6 billion underspend, which Treasurer Josh Frydenberg says is the result of backlogs in approving applications, delays in some states joining the scheme and the time taken for service providers to launch.
Confirmation of the underspend prompted former Opposition Leader, now federal spokesman on the NDIS, Bill Shorten to describe the system as “constipated” and argue Australians would be “furious to discover that they are subsidising the government’s budget” while they wait for support.
Since mid-2013, $1.9 billion has been committed to South Australians with disability but only $1.1 billion has been spent. Nationally $18 billion of a committed $27.1 billion has been spent.
The NDIA says “participants tend to utilise less of their first plan … as it takes time to familiarise with the NDIS and which supports to use”, but this improves in subsequent years. This dilemma is something Nicole Keller sees daily as the chief executive officer of Kudos Services.
Her organisation grew out of the former Disability SA as a “direct response” to concerns that public servants with disability experience might be lost to other sectors in the transition to the NDIS.
Kudos is now funded by the NDIA to work with children who are on the scheme – or need to get on it.
“At the moment there are a lot of providers, and new providers coming in all the time, and it’s very difficult to work out who does what. They’re not all equal,” Keller says. “Parents are thirsty for knowledge. They’ve got a feeling that things aren’t quite right with their child but they can’t find what it is that they need.
“There’s this overwhelming feeling of relief when they do finally have a chance to speak with someone. We have quite a few families who break down when we first meet with them.”
Kendall Field says DACSSA has been contacted by others “experiencing severe family breakdown because of inadequate (disability) support” who were on the brink of “relinquishing” their children to state care.
“These families had tried a lot of other things but without advocacy on their behalf they would have had to relinquish their child … and in some cases they did,” she says.
Children were the sole focus of the NDIS in SA when the first trial began in 2013. The State and Federal governments estimated about 5000 kids would join the scheme, but far more sought support, particularly for autism. Adults began joining in 2016 and by mid-2017 100,000 people were receiving support.
As of June this year the NDIS was deemed “fully operational”, albeit serving far fewer than the expected 460,000 participants.
The State Government says every one of the 13,100 South Australians who were receiving state-funded services has shifted over to the NDIS, but disability advocates and the Opposition question what that means in practice and fear some deemed eligible are still waiting for funding to flow. The transition has been patchy for providers too, catching one of the largest and oldest in the game off-guard.
Minda CEO Clare Allen concedes her organisation “didn’t move fast enough” to get its clients onto the NDIS and the backlog caused problems.
“The scale of that transition was more than we expected – but we would not be alone in that,” she says. “We needed more staff, we needed more supports and I don’t think we did that very well because we weren’t set up for it.”
Allen was brought in to lead Minda in May, after it had been without a CEO since the previous October and following a federal Health Department audit which imposed temporary sanctions. By now, more than 2000 Minda clients have shifted to the NDIS, but there are still about 700 to go.
“We’ve had to employ a whole new team of people … to make sure that they pick up that administrative task,” Allen says.
While the NDIS has created soaring demand for disability workers, the new model where individuals choose where to spend their funding has made workforce planning less predictable.
“A number of organisations have had casual staff, maybe too many casual staff … because we’re actually thinking, ‘When are we going to get the payment’ and therefore we can’t bring on permanent staff,” Allen says.
At disability service Cara, the workforce has more than doubled since the NDIS began – from 467 in 2013 to 999 this year. Cara executive manager workforce development Tim Wilson says the organisation still needs to hire another 100 staff to meet demand.
“We’ve also welcomed a number of staff who’ve made a career change … (including) a former butcher and a former baker,” he says.
Overall, the NDIA’s workforce has grown to more than 10,600 people, 11 per cent of whom have a disability.
About 2000 planners and local area co-ordinators have been put through a new six-week induction course since mid last year to address criticism they are under-trained.
Earlier this year the NDIA released the results of its first annual outcomes survey, which captured the views of 57,000 users, family members or carers involved with the scheme for a year.
Among people aged 25 or older, growing numbers were able to participate in community groups (41 per cent), try new experiences (70 per cent) and take part in leisure activities (96 per cent). Of those aged 15 to 24, 61 per cent were able to make more decisions in their lives and 19 per cent had a paid job. Among carers of younger children 91 per cent believed the scheme had helped their child develop.
Following the May federal election, Queensland MP Stuart Robert was appointed minister responsible for the NDIS.
On a visit to SA last month he said satisfaction surveys showed 85 per cent of South Australians felt they had a “good or very good” experience arranging their NDIS plan.
But in response to public concern Robert has announced a review of the laws and rules underpinning the scheme.
He has also promised a new “participant service guarantee” to take effect from July next year, to “set new standards for how long it takes people to get their NDIS plan, or have their plan reviewed”.
The long-term financial sustainability of the scheme remains a concern.
This financial year the SA Government is chipping in $752 million. As backlogs are cleared the “underspend” will diminish, drawing more on the federal Budget.
It was initially proposed to increase the Medicare levy to pay for the NDIS and legislation was introduced to federal Parliament in August 2017 – but scrapped the following year.
Much like Medicare, the NDIS is an insurance scheme meant to act as a safety net for all Australians who could be born with, or acquire, a disability.
Hopes soared when the scheme was announced and no one is critical of the intent. What has let most down is the chasm between the vision and the reality.
“There’s still a lot of administrative issues to be sorted out, but we’re unable to even come close to responding to the demand for our (advocacy) services,” says Kendall Field.
More concerns are likely to emerge now that the long-awaited Disability Royal Commission has opened. At the first hearing last month lawyers revealed that every 10 minutes, someone with a profound or severe disability experiences violence in Australia.
The Commission has put large NDIS providers on notice that they will be expected to co-operate with the inquiry.
Its findings will hopefully help government improve the system in future.
“What we would like to see is more consistency between people and (NDIS) plans,” Field says. “We’d like to see people have confidence in the system and be able to achieve outcomes independently and get on with living a good life.”