NDIS is ‘life-changing’ but allocations and price gouging need fixing

Sometimes happenstance can lead you into a moment of history.

On assignment at the Australian Open, I tried to get my story out of the way so I could catch the match between Dylan Alcott and Sam Schroder that had been upgraded to centre court on Rod Laver Arena.

I failed. It was all over when I arrived. The ball boys and ball girls had formed a phalanx on centre court as Alcott, 31, a golden grand slam winner and Australian of the Year, gave his retirement speech. It took me a second to realise he had, in fact, lost the match.

Dylan Alcott speaking during the trophy presentation after the Quad Wheelchair Singles Final where he was beaten by Sam Schroder of the Netherlands.Credit: Getty Images

The atmosphere was charged. To my right, a handsome athlete, all tats and cut off sleeves, leaned intently forward, drinking in every word. Only later did I notice he was in a wheelchair.

This was the match they had stopped the 6pm news for. Alcott gave a speech for the ages. Even though he had lost, he had won. “Thanks for backing someone who’s disabled to be the front of your brand,” he told officials.

“You changed my life, but maybe judging by that award I got a couple of days ago, maybe I changed some other lives as well,” he broke off as a roar swelled from the crowd, which included children waving cardboard signs.

“I am still the luckiest person that I’ve ever met. I am the luckiest guy in this country if not the luckiest person in this world to live the life that I live.”

He urged everyone to take note of all those in wheelchairs who were watching near me on the stadium concourse. “People like me … we are integrated and involved in our society.”

His retirement speech felt like the end of an era but also the start of a new one. An acquaintance, journalist Tom Ravlic, was also moved. “This one hits me in a different way,” he wrote. Ravlic has a rare disorder, wears hearing aids and prescription spectacles.

Hypoparathyroidism is a hormonal condition which leads to low blood calcium levels, wreaking havoc on the body. It is so rare that Ravlic didn’t meet anyone with the same condition until his 43rd birthday. He praised Alcott’s selection as Australian of the Year. “The selection committee has consciously decided to remind people who are disabled that they matter, bringing issues disabled people face to the fore.”

Many children with disabilities today live lives transformed by the National Disability Insurance Scheme.

A few days after the Open, my young cousin Jamie celebrated his fourth birthday with a green ice cream cake and a purple wading pool. He ate his ice cream himself and sat up by the edge of the pool splashing about.

Eighteen months ago, it would have been impossible. Jamie has Bainbridge-Ropers syndrome, a very rare and hard to diagnose genetic disorder which affects his growth and development. From a young age he could access thousands of dollars of taxpayer money each year via the NDIS. Vital when a child’s walker can cost $8000.

His parents are forever grateful. “It’s really a life-changing scheme, and we all recognise that he is very lucky to have that,” his dad said.

It’s hard to look at such joyous family photos and admit that the NDIS funding is spiralling out of control.

The NDIS Annual Financial Sustainability Report Summary projects that the scheme will have 670,400 participants by July 2025 and 859,300 by July 2030. Total costs will be $29.2 billion in 2021-22, growing to $59.3 billion in 2029-30. In three years we will spend more on the NDIS than on Medicare.

Almost every forecast has been wrong: new entrants flood in, the many who receive early intervention support don’t leave. The payments for participants is increasing at 12 per cent each year.

One parent told me that their disabled child received $26,000 from the NDIS one year. The next year that dropped to $23,000, but on appeal increased to $41,000.

While the rest of us can visit the physio and pay about $100, NDIS providers of children’s physio can charge in the vicinity of $200 per hour.

The parent told me: “To me it’s almost price gouging – with adults you don’t pay that. I just can’t reconcile how can a physio for children cost twice as much as an adult.”

The NDIS recommendations for solving cost blowouts are weak, talking about ensuring access to services which are “evidence based and proven to be effective” and using “consistent, evidence-based decision-making”.

An intelligent structural debate about the size and shape of the NDIS needs to be had in a society where The Smith Family in a funding appeals says one in six children live in poverty.

Means testing the NDIS must be considered. It is an election year. The federal budget lands on March 29. But I predict a big structural debate about the size and shape of the NDIS will be beyond the scope of our politicians.