My grandson has an acquired brain injury,caused by the removal of a tumour.He also has total pituitary and hormone deficiency,these were also caused by the tumour.He does not fit the criteria for most groups of invalids and disabilities so my daughter was unable to get help with him.She booked him into respite care and sent the bills to the minister for health.After he had been to respite several times the ministers office called her and wonder of wonders they have now come to her aid.It seems you have to make things happen in these cases.Keep perservering,cause a stink ,eventually someone will help.Go to the media if you have to.

Thank you Jean for your heartfelt article. You are so right, governments have neglected families and the expectation that they should endure to the end! But families also may make the mistake that government should rescue them from their children. Isnt this the risk we all take whenever we have children-they are not always perfect? Sure, we might obtain assistance, but the state has never proven itself with anyone to be an effective parent. The only parents of disabled children I know who have successfully created a better future for their sons and daughters were those who realised the state will never provide the kind of life they wanted, and went out and organised it themselves. And that is true for everyone. It is wrong that departments expect "the community" to provide, but a good life has never come from being thrown in with others, whether they are elderly or disabled.

Disability activists/advocates also have something to answer for here. They have made demands which are, quite frankly, impossible for any government to meet. "Equal opportunity" has come to mean that ALL buildings must be accessible and ALL public transport must be accessible, that ALL children must be accommodated in the mainstream etc. When issues are raised about the costs of this the bleat is "but it is our right and the law says it is our right". It does not matter if the building is unlikely to be used, the public transport is being kept on for just one person at a tremendous loss to the tax payer and the child is so disruptive in the classroom that the other children are not getting what their right to an education. The cost of some of these measures then means that some of the services people with disabilities desperately need are being downgraded to meet the demands of what a friend calls "the articulate minority". (She also says that the vast majority of people with disabilities also have a wide range of communication disorders so that they cannot access what is rightfully theirs.)
And a member of the ALP tells me they plan more 'in the community care' because 'that is what people want' - and then admitted it is a good way to save money! It is a truly appalling situation.

Hi desert,
80% of all-of-life-carers become sole parent carers.
This means that because there are no supports or taxation offsets, most sole parent carers cannot earn an income that in any way lifts them out of the poverty cycle. In fact after paying for the cost of care before tax an $80,000 income can become as little as $25,000. This is because governments find it ‘cheaper’ to enforce ‘free care’ by not providing any. In fact most sole parents 24/7 carers never acquire assets, nor superannuation.

How then are we to be expected to provide for our sons and daughters futures?

Easy to say - you must have an accumulation of assets, but most of us do not. If my daughter did not need 24/7 care, I could have had all of those things that you seem to expect us to have.

Perhaps we should just die in our beds with our children at our sides? It would save the economy a fortune.

Oh that’s right the economy already saves a fortune.

Under your scenario, the public purse should not fund childcare, nor schools nor medical services for families - what about genetic illness, cancer, renal problems, heart problems, any problem from birth, should parents pay for these problems, even when their children are 20? 30? 45? what about 55? after all they made the decision to have them.

I do agree though that if I had 5 million to place in trust, I could die in peace knowing that my beautiful daughter would be well provided for, paying for 24/7 staff off the interest (if the public trustee couldn’t get their greedy little hands on it).

Nell, its just the expectation that the government should provide for all, and can actually provide something that is beneficial I am questioning. If you believe this, go for it. For me, I have seen too many government services (and non-government for that matter too) that neglect and abuse, and thats at the level they operate now. If that's where you want to put the future of your son and daughter, I would be careful - you may just get what you ask for. Planning for the future is more than just a financial matter, its about working with providers, seeing what other families have achieved, crafting a life around people's abilities and bringing them into positive contact with others. For me, the more giovernmet is involved in my life, the less control I have, the more decisions are taken away from me, and the more I have to be content with what's provided. I am not prepared to surrender to that.

Thanks Jean for telling it like it is.

We have to question why, when over 15.5 billion dollars is sitting idle it is being called good economic management when it means our mothers and fathers, sons and daughters, sisters and brothers who are frail aged, disabled, mentally ill or chronically ill are going without vital services and supports that would make their lives worthwhile.

Is this the kind of nation that we want? A nation that is build purely on economic rationalism which disallows that a nation is about it’s people?

Another 50 billion dollars is sitting in a future fund while many Australians have no future.

Loss of hope, becomes intergenerational and spreads its tentacles into the future like a social cancer…

Both major parties eye these 'windfalls’ off, but there will not be too many surprises that it will not be going towards good social policies and supports and services.

Economic rationalism and the economy have completely neglected the community. Simply look around you, when the community is neglected, disenfranchised groups turn to alcohol, drugs, crime and anti –social behaviour or suffer in silence creating massive depression with enormous impacts and repercussions on the health care system. The increase in assaults on the aged and the vulnerable are all part of the social disease that has grown from economic rationalism gone too far.

But to most politicians, this means little, few actually get down and dirty with the people they expect to score a vote off.

Neither major parties deserve our vote. Both the Liberal and Labor parties have forgotten that they are elected to represent the broader community, not just the big end of town.

Seriously think about voting for a Carers Alliance (political party) candidate for the Senate, they are running in QLD, NSW, VIC and WA. At least by giving someone new a voice we might have some issues addressed, not just 'party line' rhetoric.