I’m So Sorry.

I want to sincerely apologise to the disabled and ill people of Australia. You see, while I’ve had my share of dramatic medical issues and I also have a qualification in disability, I have, until recently, been mercifully unfamiliar with what it’s like to cope with chronic and serious (yet not urgently life-threatening) illness. A couple of months ago when my son suddenly became terribly sick, that changed.

Our 22 year old son was born very prematurely and suffered a brain injury at birth. Although he fully recovered during childhood, passed Year 12 with excellent results and happily went off to university to do a degree in music performance (he’s a gifted guitarist and flautist), some months ago he suddenly became extremely, and chronically, unwell. We still don’t know exactly what’s wrong, and it’s been a terrible time for our son and our family.

Although he has an acquired brain injury rather than a mental illness, some of his symptoms and treatments are similar. So I’ve been able to observe the shameful state of services into brain injury and illness in 2016 Australia.

Although we’ve had wonderful hospital care for our boy, there’s little research and constant funding cuts in this area of medicine, and many are missing out on what they need. If you get a chance to watch psychiatrist Patrick McGorry’s talk to the National Press Club recently, please do. He explains how raising awareness of mental illness is all very well, but unless there’s also a focus on actually funding care for unrelenting mood and thought disorders, we’re failing those people.

Australia gives many millions to organisations like Beyond Blue, but the money that actually filters down to patient care is grossly inadequate, and falling. And the lion’s share of money goes to the feel-good job of “raising awareness”, which is often just a furphy for staging fun events full of mutual back-slapping for well people. Most of whom have never met – and never want to meet – a real live desperately sick person. Meanwhile, those who are desperately ill and at-risk remain unseen, unheard, and untreated – or at the very least under-treated.

I heard the Prime Minister comment about the Headspace organisation on QandA a couple of weeks ago. He said their funding hasn’t been cut. That’s complete rubbish — there’s now a 6 month wait (at least) for our son to access their services, and this is shameful. Their CEO also resigned in disgust recently, apparently due to funding cuts and unconscionable changes to their ability to offer services to their clients.

We’ve also applied for a government benefit for our son. His specialist appointments have high out-of-pocket costs, and his prescriptions are expensive. As he cannot work or study he should be entitled to the dignity of a small income, so he’s not completely dependent on us. So we thought he’d be eligible for a disability or sickness payment. Wrong. We’ve had a very rude shock about what’s available to those with a disability in today’s Australia — and this funding has also become worse during the Liberal government’s term of office, and is about to become yet worse again if Scott Morrison gets his way.

For a start, nobody in Australia can access any disability benefit until their illness is “stable”. Many with disabilities are never fully stabilised, and the government appears to ruthlessly use this to keep denying benefits. The only benefit our son is eligible for is the Newstart Allowance (a lower payment than a disability pension), and even this is only available for 9 months. If he can’t be stabilised sufficient to move to a disability payment by then, it seems it’s just tough luck.

Secondly, with all my education and business experience, I’ve still found it unbelievably difficult to gain even this for my son. The tricks and road blocks put in the way by Centrelink are horrendous, and there’s little choice but to believe this is deliberate government strategy. Perhaps these subterfuges reduce some rorting of the system, but they also unfairly disadvantage needy, deserving people who are in absolute crisis. If our son were trying to access these payments himself he’d never, ever succeed. How many brain injured and mentally ill people in Australia are being denied government assistance, unless they have someone helping them?

It seems if you’re sick enough to get a sickness benefit in this country, you’re too sick to successfully apply.

At the very least, the stress of trying to navigate the barriers to getting help must exacerbate the illnesses of many people. It doesn’t surprise me at all that so many apparently give up, and end up homeless. And as the number of Australian homeless people is steeply rising right now — and suicide is also at an all-time high — these issues must be connected. Nobody is less surprised by this than me.

Thirdly, there’s no help at all for those with a disability in Australia until they turn 22. Until then, people are considered the responsibility of their parents. But what about those — for a hundred different reasons — who don’t have reasonable parental support or who’ve had to leave home? We really are a society which increasingly ignores and marginalises its weakest members.

Lastly I am — like many — worried about the potential dismantling of Medicare. My son needs regular tests and doctor visits and while I can afford an extra $20 here and there, many with chronic conditions cannot. And where will it stop? Medicare is being nibbled to death, unnoticed except by those who really need it. Being seriously ill and simultaneously having to worry about paying for it is perhaps the cruelest burden a society could place on anyone.

I’m also terrified that a new LNP government will bring in the changes they want to make to Medicare by stealth, if they can’t get them through parliament. Much of what they want could probably be achieved just through administrative changes within the health department, and won’t require navigating a hostile senate. This is how Tony Abbott brought in his doctor co-payment — when he couldn’t pass it via the budget, he just did it in a different way. If they did this once, they can easily now do it multiple times, until Medicare as we know it has disappeared. Once it’s gone, how will we get it back?

I have a decent income and may seem like a whiner because I don’t desperately need funding support for my son. But this isn’t about me or mine— it’s about other people who need these payments. For some, this income support could literally mean life or death. Or life on the streets instead of a dignified, decent, supported life.

I’m in the right demographic to be a Liberal voter, as I own a small business. I should be smugly looking forward to my business tax cut. But I could never vote for a government that puts the care of its most needy members behind the wants of business owners. And I despise anyone who’d vote for a government purely based on this sort of self-interest. Of course, if Australia couldn’t afford to take proper care of its people these arguments would be moot, but with 50 billion probably going to unnecessary tax cuts and 50 billion to obsolete submarines should the LNP pass their proposed legislation, don’t try to tell me we couldn’t care for people properly if we wanted to.

In addition, I don’t subscribe to the common Thatcherite view that people should be prepared to take care of themselves. It’s not till you care for a person with a serious disability — who was, just a few months ago, an extremely able and high-achieving member of society — that you realise how quickly any of us could slide into dependence, given tragedy or bad luck. And sure, family back-up is there for many people should they face difficulties, but many — through no fault of their own — don’t have this, or their families are also doing it tough.

Perhaps the NDIS will assist with some of these issues, but it hasn’t properly started yet and after my experiences with Centrelink I’ve lost faith in government agencies. I hope it’s a blessing for disabled people, but I won’t hold my breath.

Any of us — and our children — are just one car crash or serious illness away from devastating disability. If it has never occurred to you to think about what you’d do if you were unfortunate enough to experience this kind of calamity, then take it from me.

You’d be desperately hoping Australia would elect a government that would put sick people ahead of self-interest and business profit. You’d be very, very sad on their behalf that this doesn’t appear to be the case. You’d be living in hope that Australia could go back to the polls, soon, to get this right.

And you’d be really, really sorry — like I am — that as a country we haven’t cared enough about people to make this right.