A disabled child is a double whammy,

1 – every loving parent brings into the world children who they want to see grow and develop into independent and fully participating adults. This expectation is lost with a profoundly disabled child.

2 – a parents life is seriously curtailed in the caring for the needs of someone with profound disabilities.

Those who display such love for their less-than-perfect offspring deserve the respect and support of the rest of us, who have produced healthy fully-functioning children who, in my case, have grown into full participating adults in out community.

Once, when my elder daughter was in hospital (broken leg), she was in a bed next to a 8 year old boy with severe brain damage, he was blind dumb, incontinent, suffering the early onset of arthritis from medications previously given.
He was a SIDs death who medics had managed to revive but revive not soon enough. He was in hospital for respite care for his parents. His grandmother was there telling me about him. She said, considering the impact of his disability on the family including his siblings, she sincerely wished they had not attempted revival at all.

As a supporter of choice, I can understand how anyone knowing they have a defective embryo might choose to abort, rather than commit the rest of their life to caring.
I do not think making such a decision would ever be easy.
I am just lucky such a dilemma was never placed in my lap for me to resolve.

Care for the profoundly disabled is one way in which we can truly measure the quality of society and I would hope, in this field, we could be a world leader.

When all is said, I know I would far rather contribute to the support of someone else’s disabled child than they contribute to the support of my disabled child.

An old saying, “There by the grace of God go I”

It applies to everyone who is a parent and loves their children

trikkerdee & lolita,, if you have already given birth to a disabled child you must have weighed that disability against the childs future and known continuing with that birth would be a lifelong occupation and that eventually someone else must fill your place as caregiver. If your going to have a child you should have considered the totality of that endeavor and long since begun a system of financial planning that considers accident and disability.
I began a savings plan for any future child as soon as I began planning a future with my then girlfriend/soon to be wife. We had each pregnancy studied by the doctor using the best instruments and most current medical science. If we had had access to DNA sampling I would have paid to have that information. We informed ourselves according to our times. I am not judging those who's times were scientifically insufficient to be as informed. Yesterday was yesterday but, today we can with science and technology offer that reprieve where malformed births are considered. Accidents are accidents and should be insured against. Don't you people have insurance for yourselves and your children?

Thank you Jean for highlighting the issues so many family carers face. As a citizen of Australia I certainly expect that Government who holds the purse strings for the benefit the entire Australian community would provide supports to those citizens who need them. Aquarius, when you and your girlfriend were planning on only having perfect,whole children did you also factor in to your utopian dream the first home owners grant, baby bonuses, child care rebates, childcare, before and after school care, all of which is heavily subsidised from Government coffer? Did you factor into your dream the fact that you, or your girlfriend, or child could in the blink of an eye become permanently disabled through a non-compensable injury? Did you also factor in having a child who was unable to be identified as having a disability in utero or in the first few years of their life? Or a child who develops a debilitating and devasting mental illness in their late teens? Did it ever occur to you that one day you could become a fulltime unpaid carer - having to give up work, your dreams, your life and provide fulltime support and care to another without subsidy or assistance? If it hasn't then you should take notice and realise that not all things can be planned for or insured against. I am giving you the benefit of the doubt that your comments thus far result from ignorance and lack of life experience rather than a callous disregard for others whose lives are so different from yours so far. Remember it only takes the blink of an eye for this to all change and your world to turn upside down.Your future could be our present. What would you then want?

Thank you for your comments Jean. I am a single parent carer who receives 24 hours of respite each week. Wow, that sounds like a lot, but wait a minute, 14 of those hours are used up in travel because we live a long way from the nearest town.
If the local bus which picks up my disabled son is not running on any given day, I am told that I can pay for a taxi to take him 80kms (one way folks) or the fare can come out of his Mobility Allowance (we know that's a lot eh!).
Too bad if I live so far away, that's the luck of the draw. Notwithstanding, my son already pays for two buses (yes 2) and his mobility allowance is swallowed up within 8 days of the fortnight - not their problem.
Oh yeah, I can't access facility based respite because I have only been waiting 5 months for an orientation, and have completed the respite agreement in April 2007, sorry, we are too busy, but on the grapevine I hear other carers are being telephoned with offers of more respite because there a vacant beds?
Now what, I am banging my head up against a brick wall. I removed my son from a DHS run CRU because he was being allegedly physically assaulted and sexually appealing to another male resident.
Now I am waiting to be appropriately resources so that I can better care for him at home, but I am still waiting.

Aqvi - have you tried to get insurance for you and your disabled kid?
You can afford it right? Have you any idea of the sort of expenses some parents have? Some parents are stretched to the limit. Siblings go without. They go without a heck of a lot of other things too.
Often one parent will be the full time carer - no nice second income coming in but still plenty of extra expenses.
Governments of all persuasions could do a heck of a lot more with the same amount of money if it was properly targetted - but that would mean putting up with the inevitable outcry from some (not all)'advocacy' groups. It would mean trusting people with disabilities and their carers to manage their own financial affairs - and the advocacy groups are putting a stop to that just as much as any government is.
One of the things we have here is a small group who think that what they want is right for everyone. They do not listen to the majority of people with disabilities and they most certainly are not listening to carers. Carers are not even supposed to know what the people they are caring for want - only the 'articulate minority' I mentioned earlier know what everyone wants. No wonder we get nowhere.

I am deeply moved by the contributions of Abandoned, and cheered by the compassionate good sense of Col Rouge.

There will never be enough government capacity to meet all identifiable needs. If our present IR practices are followed it requires 4 shifts a day, for 7 days a week, that is 28 shifts or 6 workers to provide 24 hour coverage. So, there are 700,000 disabled, and we would need about 4 million persons to offer each of them individual full-time care. So, about 50% of the Australian work force would be required. This is stupid mathematically but I have done the theoretical figures to highlight the enormous task.

The issue is political. The issue is one of fairness and judgement. The Government obviously can't do it all, but is it doing enough? The old adage "the squeaky wheel gets the oil" applies. Keep it up, speak louder Jean.