4 Corners on Monday 15th February was gut-wrenching television, one of the best, if most harrowing, 45 minutes I’ve ever seen.

It outlined the pathetic, shameful lack of support for people with a profound disability and their carers. There are thousands of families that go through the desperation and love and heartache shown so clearly on 4 Corners that night.

It should inspire carers to mobilise, with our support, and spur governments of all levels into some kind of action after so many years of ignoring the issue.

No doubt all we’ll end up with though, is very concerned-looking ministers and bureaucrats, putting out caring-sounding press releases and making vague half-promises. Which is what they’ve done for the past twenty years, as the problem has grown more and more heartbreaking stories and help gets harder and harder to find.

Other than throwing vast sums of money at the problem, I can’t and won’t suggest a solution; I’m not a government. What I can and will do is try and tell you how fucked this is.

There are about 700,000 people in Australia classified as having a profound, limiting disability. Something like 33,000 of them are receiving some form of government accommodation assistance. That’s less than 5%; the rest are at home with their parents. Parents who are getting old, and who work so hard to care for their disabled children, keep their marriages together, pay the bills and try to remind their other children that they love them too. They lost the energy to even be tired years ago. They’ve given up trying to get respite care or long-term accommodation or support for their kids, and are just grinding on, wondering what the hell will happen when they die, and contemplating what should, in a decent society, be simply unthinkable.

All around the country, parents driven to breaking point, unable to provide the care that their children need, are just dropping their children at hospitals, because that’s the only way DHS or DoCS or whatever agency is allegedly responsible, will finally take some responsibility.

When a carer dies, the “support” agencies trawl through any remaining family in an effort to force them into taking on the full-time care of their relative, and only after all means of handballing the disabled around are exhausted is accommodation and care eventually found.

This didn’t used to be a problem, as there were institutions like Kew Cottages where people with all kind of disabilities were lodged, sometimes well, but quite often in appalling, dehumanising conditions. In the early eighties, however, disabilities and the disabled became something we could talk about; wheelchair ramps were installed everywhere and we realised that simply dumping people in large institutions was wrong. The Bedlams were closed, with the promise of community housing and support. People with intellectual disabilities were no longer to be lumped together with the mentally ill, and those with physical disabilities weren’t to be hidden away from view. Oh, they were wonderful promises, of group housing with 24-hour carers, social lives, employment, equality and inclusion.

What actually happened can, of course, be seen by looking at homeless shelters and prisons, particularly in the case of those with a mental illness. The institutions were closed, the real estate sold, and the residents left to fend for themselves on the street, or with their families, or having their pensions siphoned by parasitic “boarding house” proprietors. The promises, naturally, weren’t kept, as it dawned on government that all these group homes would have to be bought, maintained, and staffed, and that this would cost much more than the old institutions had.

So young people with acquired brain injuries are living in aged care facilities - if they’re lucky. The mentally ill are negotiating the revolving doors of hospital psych wards and the prison system. The physically and intellectually disabled, if they’re fortunate enough to have family able to care for them, are at home, with parents who love them and do everything they can, but who, let’s face it, deserve a life of some kind and a break from the endless heartache that comes with caring for a profoundly disabled child.

Initially, when the promises were still promises, state and federal departments had waiting lists for accommodation; as more and more people went on the lists, and, as almost no housing of any kind came online, the waiting lists started to become embarrassing – the “Urgent” list in Victoria was out to fifteen years in many cases – so, in the spirit of service provision and World’s Best Practice, the waiting lists were simply abolished. Which made it easy to say, without lying, “there are no people with disabilities on waiting lists for accommodation or respite care.”

The cynic can easily say that it was all a scam to save money; the institutions were on prime real estate in a lot of cases, and not many parents would say “No, I’m not taking my kid back”. They’re too disparate (and too overworked) a group to organise any publicity to guilt government into doing anything, and it was an issue that wouldn’t rear its ugly head for a good couple of decades yet.

Well, it’s rearing its ugly head now. The vast majority of carers are Baby Boomers, that is, hitting their mid-to-late sixties, and thus becoming physically and, in many cases, financially unable to bear the huge burden of caring for their children with disabilities.

As the population ages and more and more Boomers enter the welfare/pension system in their own right, federal and state governments are about to be hit with a tsunami of expense that they’ve known for years is coming, and have done nowhere near enough to prepare for.

Despite the fact that there is vast, inefficient duplication of bureaucracy and red tape, and that funds just never seem to be available to provide the services so desperately needed, it’s not just a matter of money. There is a philosophy in the field which seems to deny the practicalities of caring for the profoundly disabled, concentrating instead on motherhood statements and feel-good initiatives like Inclusion and Equality and Rights.

Yes, people with disabilities of all kinds have rights, and deserve to be heard and recognised, and absolutely should be included in society. But the forty-five year old man with the intellectual capacity of a two-year old child, whose seventy year old father has to bathe, feed, clean and toilet him day in day out, doesn’t really know or care about his right to be an active participant in a caring open society that respects him as a human being. What he needs, and what his father needs just as much, is a place to live with trained staff to care for him, and the chance to socialise with his peers, in whatever way he can.

A quick skim through the Disability Services Victoria website is all it takes, the Goals of Disability Services are as follows:

1 - Pursuing Individual Lifestyles

2 - Building Inclusive Communities

3 - Leading The way

“The Victorian Government’s vision for the future is that:

By 2012, Victoria will be a stronger and more inclusive community - a place where diversity is embraced and celebrated, and where everyone has the same opportunities to participate in the life of the community, and the same responsibilities towards society as all other citizens of Victoria.”

It’s all about people with a disability having the “same opportunities as all other citizens of Victoria to participate in the life of the community - socially, economically, culturally politically and spiritually.”

Not a word about service provision or accommodation or respite care, or acknowledgment that many profoundly disabled people and their carers just need some practical help. The picture of people with a disability that governments seem to have is of high-functioning, independent people whose only need is to not be discriminated against. A census of Disability service outlet operations revealed that there were 276 Australian Government funded disability service outlets in Victoria. Of these, 10, that is, 3.6%, provided respite services. 87.3% provided employment services, 8% provided advocacy services, and 1.1% provided print disability services.

Advocacy is important, so is employment, for those able to work in some fashion, but there are more basic needs that must be provided before a person with a disability can even begin to consider participating in the community. In fact, the current situation, where tens of thousands of these people are isolated at home with their parents, is the exact opposite of these stated Goals and Visions.

While governments at all levels continue to fail to provide accommodation, financial assistance and respite care for people with disabilities, these warm and fuzzy Goals and Visions For The Future don’t just look like a load of management/social worker doublespeak, they are downright insulting and hypocritical.

So next time the Premier is making excuses for paying $20 million plus of our money to keep the Grand Prix in Victoria, and as you sit there and wonder what the hell Frank Lowy’s doing with that $45 million for the World Cup bid, take a second to consider the plight of these people who aren’t pretty, or talented, or articulate. As another spoilt brat waves a gold medal around on his or her way to a cereal sponsorship, think about what it’s like to be seventy years old and lifting your non-verbal forty year old son on and off the toilet, wiping his bottom for the fifty thousandth time, being too tired and too poor to even be bothered getting on the phone and asking for help that won’t come, and wondering just what the hell’s going to happen to him when you die.

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