"Carer" is a broad term. Most carers are those who look after an ageing parent or ailing spouse in the final months or years of life. Other carers look after a family member who is rehabilitating after a severe illness or injury. Some carers do not co-habit but "drop in" on a friend, neighbor or family member to lend support. All of these groups have needs which are different from the group that I am concerned with: the lifelong carers of adult children with severe and profound intellectual disabilities. These are the people who by accident of birth or life have had a disabled child and who have cared for decades. Why would they not be depressed when they know they will live out their remaining days with the continuing care of their son or daughter uppermost in their lives? Parents who have had the most difficult experience of parenthood are the same ones who may never know any experience of retirement. Their disabled sons and daughters may not know the freedom and independence that leaving home brings. These are usually very social people who crave the companionship of people like themselves. Yet Australia makes one place available for every twenty such people and leaves the rest at home with their parents, even when those parents are in their seventies and eighties. They are just not important enough to warrant the large expenditure involved in their care, especially when parents will do it for free. I would like to see a debate around the issue of whose responsibility are the intellectually disabled people of our country? Does our community think it reasonable for government to assume responsibility for these most vulnerable citizens when they turn a certain age? Every country has its intellectually disabled citizens and in almost every first world country, governments have legislation and policies to give these people rights and choices in life. Australia lags far behind, decades behind and deals with this "problem" by letting the ageing carers cope with it.

I am very disheartened by these empty words Rachel. You sat in on the Senate committee and heard the evidence presented about disability services around Australia and all you can do is cut and paste a redundant policy from Carers Australia.

It is taken as a given by the evidence presented to the Senate that the Commonwealth State and Territory Disability Agreement is under-funded by a massive 300%.

You heard evidence that Carers have no funded Advocacy - Carers Australia are a funded information broker they do this well - but they are politically neutral and risk their funding if they rock the boat. Carers Australia's target group are those caring for the aged and yet you quote them when talking about us all.

Unpaid family carers are understandably angry that governments expect us to care until we are taken away in a box, at which point they manipulate the siblings to continue the care role. So it then becomes generational disadvantage caused by cost-shifting. The real answer Rachel is to provide services like other first world nations do. The real answer Rachel is for governments to stop using our love as a weapon against us.
The real answer Rachel is to fund disability services so that disabled Australians are not simply living of the largesse of their families. It devalues them and it devalues us.

You obviously heard my interview with Fran Kelly, http://abcscience.net.au/rn/breakfast/stories/2008/2185754.htm but did not understand that a carer must be caring for 143 hours per week or they lose their lousy carers payment! This 25 hour benchmark imposed on us includes all travel to and from work or voluntary work. In essence our governments take it away even if you earn squat to punish us for not being on call 24/7!
To be on a carer payment poverty must be severe and profound and the intention is to keep it that way because if you work you are expected to pay after tax for the cost of care for an adult!

It is a joke and the joke is on us.
Nell Brown
National Carers Coalition.

Thank you Senator Rachel Siewert for keeping the short-changing of carers and the people they care for in the public arena. It's unfortunate but I don't think the Senator understands the difference between the Carer payment and the Carer Allowance -- easy to do I suppose if you don't happen to live on it.

The Carer allowance is about $49 a week it is a non-means tested allowance to all carers.

The Carer payment is about $270.00 per week and is strictly means-tested. So basically you have to have lost the lot, the house, the husband, the job and any sense of self, for that pittance you become a carer.

Senator Siewert says the Greens support the Carers Australia recommendations again it is unfortunately but the link to these recommendation brings up a July 2005 Media Release by Carers Australia. Carers Australia has refined and improved their recommendations since 2005.

Without a political voice carers and people with a disability will continue to be a back-burner issue. In addition to the aims of the Carers Alliance found on their website we also wants to see:

1. a significant increase in the baseline amount of the Carer Payment with further payment accrued on a sliding scale which recognises the degree of effort and level of care which is provided by the carer.

2. A superannuation Scheme for Carers

3. Tax relief for carer-families who must undertake vehicle and home modifications and various therapies in order to assist their family member with disabiity

4. A national employment strategy for people with disability which includes financial assistance to people with disability to seek and secure employement

5. Access to premises legislation for all residential and commercial premises as is the case in many first world countries

6. An Education Revolution in education of students with disability who are severely underfunded in every sector

My thanks to Senator Siewert and I look forward to the Greens support for carers to further the cause of carers and people with disability in the future.

Mary Lou Carter
Party Secretary
Carers Alliance

Suprising

The greens and carers, well they are in bed with labor

Now i stood as an independent at the federal election and i have a daughter with special needs and my wife and myself are always running back and forth.

It is us the carers who have with our patience and dedication strive to give our family members the respect they deserve.

This respect which is vary no coming within the states and party policy.

When we get people in government who are willing to fight and stand up for the people and not party policy things may change, but until then we have party policy and party rule.

Stuart Ulrich

I was the 'carer" for a child with life threatening asthma for 11 years and received only an extra $20 per week for doing so.

Somehow though I never managed to morph into this mystery person called a carer who expected the world to help me all the time. I was simply her mother and no-one gave me a guarantee at birth that she would be perfect.

Some of the nonsense reponses I read to the false report of non-existent payments being cut made me sick - parents were actually abusing and blaming their children because they couldn't dump them in day care and go off to buy a Macmansion.

Good grief, parents have managed to raise disabled kids for centuries without all this carers nonsense and all these strange little groups that have popped up.

Hey Marilyn, somehow I think asthma and severe or profound disability do not have any correlation to each other except when a severe asthma attack causes the most severe and profound disability there is... Lucky for you and for your beautiful daughter this obviously did not happen and she has gone onto a wonderful life of her own choosing.

You were fortunate - your child lived to be healthy because of medications and technology that research provided, instead of suffering profound brain damage caused during a massive attack.

What would you have done if that had of happened? I cannot but wonder if you would still be so twisted and lacking in empathy, or if instead you might be seeking support.

Lucky you...

Should society have denied your daughter this medical support? Or is this denial only OK if she was severely damaged?

Babies are living when once they would have died. People with minor illness (such as severe asthma) would have died because medical science had not developed the capacity to save lives, or perhaps sometimes worse - living for decades to be a shell of what they were.

But never-the-less you admit that you still managed to claim your $20 didn’t you?

Yes families have been looking after children and adults with disabilities for centuries, but get this Marilyn, I said families. The family unit once all lived close by. Their was no such thing as cut-and-run-no-fault divorce. Grandparents lived around-the-corner, as did extended family. We now live in a global world and once it did not take two incomes to feather a nest. These days families have no correlation to families of the past. It is an argument founded on ignorance of the world we live in.

Next time you see your daughter wrap your arms around her and feel the joy – because you were both saved by either fate or medical science. You could be leading a different life. One of poverty, isolation, depression and just plain old exhaustion simply because of bad luck.