As a senior executive of the “millionaire’s factory”, Macquarie Bank, Bill Moss AO was a giant of Australian business. He made tens of millions of dollars a year and had politicians on speed dial.
Now, he says, “I can’t roll over in bed. I can only eat with my left hand … I have trouble swallowing. I get a lot of pain. Most of my joints, most of the time, are dislocated.”
Bill Moss would like to see the government remove the age cap on who is eligible to join the NDIS.Credit:Kate Geraghty
Mr Moss has facioscapulohumeral dystrophy (FSHD), a form of the muscle-wasting muscular dystrophy. But he still considers himself lucky because he can afford his own care, and he is still up for a fight. He founded the FSHD Foundation in 2007 and remains its patron, committing $8.3 million to fund 40 ongoing medical research grants in nine countries.
And now he is taking on the federal government over a feature of the National Disability Insurance Scheme (NDIA) that means people with a disability who do not register with the scheme before the age of 65 are barred from funding under the scheme. Instead, they are at the mercy of the aged-care system.
“If a person loses their legs in a motorbike accident and they are 64, they’re entitled to NDIS benefits. If they do when they’re 65, they’re not,” Mr Moss told The Age and the Herald.
“There is this magical cliff here, and I look at it and I say ‘Well hang on, this is age discrimination and it should be reviewed’.”
He has written to the federal government asking them to remove the age cut-off and make all people with a disability eligible for the NDIS, introduced by the Gillard government in 2013 with bipartisan support. The cut-off only applies to new participants – someone already receiving support from the NDIS can continue to do so after turning 65.
“People with disability aged 65 or over who are not NDIS participants can receive care and support from the Commonwealth aged care system through My Aged Care,” said a spokesperson for the Minister for the NDIS Senator Linda Reynolds.
But Mr Moss says the scope of services available under the federal government’s My Aged Care program were “minute” compared to the NDIS. “It’s chalk and cheese”.
“When you examine the level of services available with My Aged Care, the differences are very alarming, particularly with regards to the range of services available and the maximum funding support limits which directly affect the person’s quality of life.”
The spokesperson for Senator Reynolds said the age requirement was based on a Productivity Commission recommendation.
“The NDIS is a scheme designed to address the permanent, unmet needs of people with significant, non-age-related disabilities,” the spokesperson said. “The NDIS was never intended to replace services already provided by the health or aged care systems.”
As the founder of Macquarie Real Estate Group, which managed $30 billion of investments globally, Mr Moss, 67, said he didn’t join the NDIS because he was fortunate enough to be able to afford his own care.
“I’m lucky because I can pay for basically full-time carers,” Mr Moss said. “But my point is, what about all the other people out there who are not in the fortunate position I am in. What about them?”
Mr Moss said with many disabilities symptoms appeared mild before the age of 65 so people may not register before the cut-off date.
“In my own case I noticed a major accelerated onset of FSHD over the last 12 months,” he said.
Mr Moss said people aged over 65 requiring specialist high needs disability care were forced to go to a nursing home – which is unlikely to be able to provide the care they require – or stay in the home and receive inadequate support from My Aged Care.
“It dawned on me when watching my mother in a nursing home: ‘God, how am I going to survive in a nursing home?’ And the answer is I won’t.”
In his letter to the government, Mr Moss called for the age cap to be removed and all Australians with disabilities allowed to access the NDIS. He also asked for a review to compare the difference in the funding caps, benefits and services available between the NDIS and My Aged Care programs.
“I call upon the government to discuss the matters outlined above as a priority, ignore the additional financial cost of the findings and stop the discrimination against individuals with disabilities over the age of 65,” he said in the letter.
Opposition spokesman for the NDIS, Bill Shorten, said aged care had deteriorated since Labor introduced the NDIS in 2013.
“For all its problems, NDIS is now a better system than aged care, so what we’re seeing is some horribly unfair situations occurring,” Mr Shorten said.
“The timing of when you get your impairment shouldn’t lead to radically different outcomes, but it is. The solution has got to be greater support for people over 65.”
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