I intend to blog a s

I intend to blog a series of articles I wrote in 2001-2002 which may only be of interest to others in our situation. In Australia we have 19million people. Of those 19M well over a million of us are full time unpaid family carers  - and I bloody well hate that word carer -  we are wives, mothers, husbands, fathers, children, brothers sisters and other…but we are called “carers” by Social services world wide… and even in doing this we lose our identity if that makes sense to you.

This is the first article I wrote…

It is clear to most Australians that we are becoming a nation weighed down by bureaucracy, government information services, call centers and paper shufflers. The result of the billions of dollars spent in these areas, is that little of the money we are told is provided for Carer Respite, Home Care, Community Nursing, actually gets through to the people who need it the most.

If you succeed to wake up a politician about a real issue of social justice or human rights, the first thing that they want to do is have an inquiry. Expensive adds are placed and submissions are called for. Then a committee has to be appointed. The committee needs an air-conditioned place to meet in. They need stenographers, computers, and phones. The have to have access to catering of some sort. Months down the track, a report is released with much fanfare.

Those of us needing to access basic human rights, such as home based respite, home care; whatever, naively get copies of the reports which invariably say that we have a case, that things must be changed and that more money must be allocated. Hearts sink from past experience when as time passes, nothing changes for those at the coalface. There is no decent or adequate home based respite for the elderly looking after brain damaged adult children, nor any human right to sleep at night for those looking after those with chronic illnesses, but there is always money spent.

The Government, Federal and State are big on providing multi-levelled layers of Information servers, who after ringing a swag of 1300 numbers direct you, often back to where you started. Then they let you know that there actually are no services available, because there is not enough money and there are so many needy people, but that they are very sorry and fully understand your position.

It seems to many of us that what qualifies as “needy people” are the Conference organisers, the Facilitators, the Social Workers, the useless Call Centers, the editors of Government backed ‘Carer’ magazines; a seemingly endless list. This is what leaches the system dry before it comes anywhere near the actual people we are told it is put in place for.

So what to do about this shameful state of affairs? You can’t work from the inside to change things, because you are then powerless, and this happens to many who honestly seek to change things. Submissions, surveys, meeting or writing to your MP is worse than useless because it steals your precious time and usually results in an “acknowledgment” possibly but not always followed up with letters form Minister’s secretaires which do not address the actual issues raised. Like many I know this from experience, so this is not anecdotal

It is a fact that the bureaucrats have set up an infallible system that protects all levels of bureaucracy from any real changes, questions and accountability. It is also a fact that the bureaucracy is self-replicating, so that any irritation or questioning of its existence sends it into a flurry of internal activity, which only calms down when yet another level of bureaucracy has been created, to absorb the irritation or question.

It appears that Australian Government is unable to control the monster it has created, and the monster is growing more ravenous, more out of control, and more stupid and self-serving.

And that word “self serving” is the key. As the cogs in the wheel each clock off from their various Centerlink, Carer Link, whatever other bloody link, they sincerely believe they did a good days work. They have created more surveys to fill out; more reports to be read; more useless letters of acknowledgment and placation; all ‘gently but firmly’ worded in the language that only they can understand. I don’t feel that we are meant to neither understand nor make sense, because when you do finally nut the terminology used by the bureaucrats in place, it is actually nonsense.

And just in case we are feeling low, there is a special sort of bureaucrat, called the Editor, of whatever Government funded publication we have subscribed to in a vain effort to keep up with the bag loads of Legalisation, and rules we are governed with, and for which they have lobbied so hard. A construct that they spare no amount of glossy paper and coloured print to remind us of, just in case we should start wondering what they are actually there for and how much they are costing. Along with these reminders of their dedication, are the endless editorials telling us all what wonderful people we are to endure; how much we are worth to society; how stressful and sad our lives must be and how much they really care about each and every one of us.

And do you know the really tragic thing? We believe all of their lies some of us never wake up, and that is the betrayal. Those of us who wake up become increasingly disgusted, and in our little spare time begin to contact others who are of like mind. We start to write letters first of query, then of disbelief and then of anger. We realise that nothing we say will ever penetrate the Teflon coating of any of the Members of Parliament, nor of the various people between us and treasury.

I believe that this is how it is meant to be, was set up to be, and it is only when you start to test the system set in place which syphons off millions of Australian Taxpayers dollars, but which pretends, even to itself, that it is all there for our benefit, it is only then that you realise the sinking reality of how things really are.

I don’t know what the solution is. Even suggesting a solution bears the very real danger of someone setting up a committee, another arm of officialdom, complete with money wasting accoutrements.

Somehow, the money allocated specifically for those who care for loved ones (as opposed to those who are paid carers and who go home) at home for long periods, must be made available to them directly, and cut out the incredible waste and useless levels of so called ‘information’ providers. This must be in the form of regular payments for in home respite, at least six monthly breaks, and for other things only Carers know about, such as retirement homes where parents are able to be with disabled children, and not have to face separation as their own health worsens.

We are the ones who know and we are asked too often what is needed. But what is needed is never delivered. Those of us, full time Carers save the Government at least $400 a day, and depending on the level of care, this would escalate. Yet here we are out here in the community, hidden. We are the gold and glue which holds our society at a certain level of civilisation but the level of human rights we experience in this ‘generous’ country is anything but the treatment we deserve. We are given scraps, no hope and no say. We have no ‘career advancement’ to look forward to, no reason to dream. And we work hard and long hours constantly being responsible, being on call, and being able.

There are no basic human rights for us. No sixty-hour week, much less a forty-hour one. For most of us we are on call, or on active duty, one hundred and sixty eight hours a week, all year round, for years on end. There is no union. No workers compensation for injuries received on the ‘job’. There is no Superannuation, no holiday pay, and most of us go for years, decades like this. If our time of ‘Caring’ comes to an end generally through the death of someone we love more dearly than life itself, we emerge only qualified to clean toilets or wash floors, as nothing of our vast knowledge is valued by the ‘system’. How we survive is our own business. Most of us pace ourselves. After time it appears to others, heading off to gyms, to the movies wherever, that we appear not to want to take part in these activities – hard for them to understand. But our spare time is too precious to us to waste with others, and the experience of just being one, on call to nobody is sweet to us and we know what this is about. It is an internal thing seldom spoken about, because what is the point? But we all know what this state of affairs is.

But as a seeming contradiction it is not just the workload, but it is mental isolation, which continues even in company. We know what this means. When we have time out, we do not really want company. Most of us just like to wander, not speaking just looking about, with no one needing us to look at this or to participate in any way shape of form. We know about this.

The NSW and National Carers Associations do not ‘know’ about this. Their knowledge is second hand, and I would query how many full time and current long-term carers they have on their boards. I think that one of the big problems is their total lack of accountability, and their political correctness. It is very hard for you to question people who are supposed to be working so hard for the good of carers.

The NSW Carers Association and the National Carers Association need to be held accountable. Like many, for all the time I have been a paid up member, apart from the “Kit” and a Ceramic Mug one Christmas, (I know who the real mugs are) they have not produced one single thing I can say has eased my lot which has personally improved temporarily due to my husband being more stable. It was almost unbearable at times and I feel I came very close to a breakdown. What would happen then? I doubt the lot of other carers has been practically improved by them although they talk a lot about what they achieve. Where are the results?

Its not just in the area of GST and petrol prices and other very important areas that the people are throwing up their hands in frustration. If the Coalition and Labour do not hurriedly address areas such as the issue of the millions allocated for respite etc not getting through to the carers, because the triple levels of bureaucracy eat up all the funding first, then they will find a very angry electorate at the next Federal Election.

Carers need to be spoken with, especially those non-metropolitan based. They are the only ones who can voice their concerns. It is an insult to us to appoint others to speak on our behalf. Unfortunately many of us are unable to travel, due to our roles and the fact we cannot get away from home without financial disadvantage, and worry as to the care of our loved one when we are away. This is very important to consider.

I wrote this in 2002…the only thing which has changed is that this has become much worse.