NDIS ‘changes life’, but allowances and price gouging need to be fixed

Hypoparathyroidism is a hormonal condition that results in low levels of calcium in the blood, wreaking havoc on the body. It’s so rare that Ravlic didn’t meet anyone in the same condition until his 43rd birthday. He hailed Alcott’s selection as Australian of the Year. “The selection committee made a conscious decision to remind people with disabilities that they matter, by bringing to the fore the issues that people with disabilities face.”

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 own ice cream and sat down by the pool splashing around.

Eighteen months ago this would have been impossible. Jamie has Bainbridge-Ropers Syndrome, a very rare and difficult to diagnose genetic condition that affects his growth and development. From an early age, he could access thousands of dollars of taxpayer money each year through the NDIS. Indispensable when a baby walker can cost $8,000.

His parents are eternally grateful to him. “It is truly a life-changing program, and we all recognize that he is very lucky to have this,” his father said.

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

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

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Almost all predictions are wrong: new entrants are flooding in, those receiving early intervention support are not leaving. Payments for participants increase by 12 percent each year.

A parent told me that his disabled child received $26,000 from the NDIS one year. The following year, that amount dropped to $23,000, but on appeal, it rose to $41,000.

While the rest of us can visit the physio and pay around $100, NDIS child physio providers can charge around $200 per hour.

The parent said, “To me, it’s almost a scam – with adults, you don’t pay that. I just can’t reconcile how a child physio can cost twice as much as an adult.

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The NDIS recommendations for resolving cost explosions are weak, talking about ensuring access to services that are “evidence-based and proven to be effective” and using “consistent and based on evidence”.

A smart structural debate about the size and shape of the NDIS needs to take place in a society where the Smith family, in a fundraising appeal, says one in six children live in poverty.

Means of testing the NDIS should be considered. It is an election year. The federal budget arrives on March 29. But I predict that a great structural debate over the size and shape of the NDIS will be beyond the reach of our politicians.

James V. Hayes