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We have changed our name! Kids on the Spectrum is now called Living on the Spectrum

A night out on the NDIS supports our young men

The latest data shows one in 10 boys aged five to seven in Australia is now an NDIS participant.



When Ben Paior-Smith turned 18 he was pretty keen to head to a nightclub in his home town of Adelaide, have a few drinks and a dance, maybe even meet a girl. Not so unusual for a young person coming of age.

But his mum, Sam, was worried. “I imagined him drinking himself silly, then saying something that might lead to a coward punch and a brain injury or worse.”

Sam Paior with Sons Ben and Bailey Paior-Smith

Again, not such an unusual worry for any parent. But Ben, now 22, has Down syndrome, autism and other health conditions. It tends to complicate things.

So what did Sam, and Ben, do? We’ll come back to them, but the answer lies at the heart of one of Australia’s thorniest, and most pressing, economic and social problems – the future financial sustainability of the National Disability Insurance Scheme.

New NDIS figures published last week reveal the scheme is fast becoming a financial behemoth. More than one million people are now expected to be on the program by 2032, the NDIS annual financial sustainability report 2021-22 estimates, nearly double the current 550,000.

Its annual cost is projected to grow to almost $90bn that year, up from this financial year’s anticipated $34bn. And that is in the mid-range of assumptions, with the NDIS modelling extreme but “plausible” scenarios putting annual running costs as high as $115bn in 2032.

The latest scheme forecasts match projections in Jim Chalmers’ October budget that showed NDIS costs rising at almost 14 per cent each year for the next decade. This will easily outstrip Medicare or the aged-care system within a few years, and is increasing at more than twice the rate of both programs.

Just five years ago a Productivity Commission report on NDIS costs noted the agency running the scheme estimated that at full rollout in 2019-20 it would involve 475,000 participants at a cost of $22bn.

Sam Paior with NDIS Minister Bill Shorten

For all its many stories of lives changed for the better, there is a reckoning coming on the scheme’s broader financial sustainability. NDIS Minister Bill Shorten knows something must be done. Last week, for the first time, he specifically flagged that he was determined to curb the growth in costs, though he wouldn’t be putting current participants through the “blunt-force trauma” of cutting individual plans.

“It is growing in its cost base too quickly,” he said. “I want to moderate cost growth.”

Shorten is targeting fraud and waste in the scheme, putting $138m toward measures to combat organised crime’s infiltration of it. Australian Criminal Intelligence Commission chief Mike Phelan recently said it could be as much as 20 per cent of the overall cost.

The minister is less overt about it, but he also recognises there is a big issue with the number of new participants coming on to the NDIS, particularly young people with autism and developmental delay. These are driving the growth in numbers, a fact acknowledged by the scheme’s actuary, Sarah Johnson, in Senate estimates this week.

As it stands, about one in three people currently on the scheme has autism, and more than 40 per cent of all participants are aged 14 and under.

The latest data shows one in 10 boys aged five to seven in Australia is now an NDIS participant.

Shorten does say he is concerned the scheme has become “the only lifeboat in the ocean” when it comes to support for some kids.

“We need the schools system to do more for the spiralling numbers of children with developmental delay entering the NDIS – more than 47,000 at the end of June,” he says.

But there is another strand to sustainability, and that is to make existing funding stretch further through innovation. And this is where Sam Paior and her son Ben come in.

Ben has had an NDIS plan since 2016. This means he receives a package of “reasonable and necessary” supports that allow him to live an “ordinary life”. Rather than running Ben’s package through a plan manager, it is self-managed by Sam and Ben, which allows them more flexibility in choosing supports.

With Paior a single parent with both children on the NDIS, respite is an allowable spend in the package, though Sam had better ideas.

“When Ben wanted to go out there were greater risks,” she explained.

“He doesn’t have the same ability to process or understand or mitigate risks as others. He has to be taught, possibly over and over, shown and repeated.

“So I organised for one of Ben’s support workers, Clarrie, to take Ben and his friend Charlie, who also has an intellectual disability, into the city for a ‘man’s weekend’.

“They stayed in a small serviced apartment, cooked some meals, learned how to navigate around the city, and then on the Saturday night, went out to Hindley Street (Adelaide’s nightclub district).

“Clarrie, and some of his uni mates who joined them, taught Ben and Charlie about safe alcohol use – cover your glass, ignore shenanigans in the toilets and avoid drunk people. It was a win-win. I had a break from caring. Ben and Charlie had a break from their mums.

“They were out doing exactly what young men should be doing, hanging out with mates.

“But they also learned a little more about independence. The NDIS paid for the support worker and the accommodation for the weekend, but not the alcohol.”

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Of course, the respite could have been done with a traditional registered respite provider, the only option for NDIS-managed participants, and chosen by so many families whose NDIS funds are planned or self-managed. Many families haven’t been supported to think outside the box like Sam, and use the flexibility that is possible under the scheme.

“Those supports where Ben would have gone are often in the soulless houses in the outer suburbs, and run in a rules-heavy, risk-averse settings,” Sam says.

“They tend to focus on colouring in, watching videos and walks in the park. Hardly nightclubbing with your mates.”

And the kicker? A weekend with a registered respite provider would cost around $10,000; the cost to Sam and Charlie’s mum around $4000 combined. With better outcomes for all.

“Just because a support is needed for disability-related reasons doesn’t mean it has to be segregated from mainstream life,” Sam says. “We’ve designed respite in a way that achieves greater and more inclusive outcomes for these young men, saved money, and it’s not segregated.

“If the scheme as a whole can find and encourage more innovative ways to spend public funding, getting closer to the actual needs of those on it, then there is great hope.”

Her experience is not simply that of another mum tirelessly fighting for the best outcome for her children. Sam now has a thriving business, The Growing Space, offering NDIS support co-ordination and advice. She employs only people with disability or otherwise unpaid family carers.

She is also a member of the NDIS Independent Advisory Council, which represents the participants’ voice on the scheme.

Her experience is passed on to policymakers as they wrestle with its future. The NDIS is now the subject of an independent review, due to report next October. One of its co-chairs, Bruce Bonyhady, said sustainability was an important part of the review, but sustainability was a concept that ran far deeper than simply the cost.

“Sustainability has two parts – costs and benefits,” Bonyhady says.

“When it comes to the NDIS, we need to look at how the scheme is supporting the independence of people with disability and their economic and social participation, as well as ensuring that costs are affordable, under control and represent value for money.

“We also need to remember that it is people with disability and their families who have the greatest interest in the sustainability of the NDIS.

“I am therefore confident that if there is a need for some hard conversations about NDIS, the disability community will be ready to co-design solutions.”

While Paior sees much to do in getting the scheme settings right, including better measurement of individual participant outcomes, she’s a passionate advocate for the NDIS and can point to a personal example of how the scheme’s cost to support her sons has led to economic benefits multiple times over.

“Before the boys were born I was a professional crisis and media manager with an international career. I landed back in Australia, after a failed marriage as a solo parent with two young and at the time very unwell boys.

“Caring for them meant I wasn’t able to hold down a job and I lived, with deep gratitude on the government carer payment.

“Being an employer was pretty far from my radar, but if I were, I would have assumed that disabled people were less reliable, more ‘hard work’ and not capable of doing what’s needed, despite the evidence that shows the polar opposite.

“I now run a business with a team of 100, all disabled people and unpaid family carers. They’re all paid at or above award rates. They produce excellent work. And we’re even somewhat profitable.”

Doing disability differently may just be the pathway to sustainability.

Read original article here

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