Thank you, Jean, for a very insightful and challenging article. There is no doubt that we Australians who have been blessed to have not experienced the relentless demands placed upon the parents and families of the profoundly disabled have let you and your fellow travellers down. You raise several valid arguments and the broader community needs to support your endeavours to have your needs properly addressed.

Unfortunately, the whole area of caring and nurturing those with significant disabilities has for too long been an area of shame for a wealthy nation like ours. The time has come for the silence to be broken so that the needs of the profoundly disabled in areas such as supported accommodation and education might be properly addressed.

It would seem, though, that too many good people who might be able to offer worthwhile support are either ignorant of the real issues or are unaware of their capacity to help.

hopefully with advances in science and use of DNA sampling, prenatal screening will let people abort those genetically malformed. Accidents will always happen and people should be insured against this possibility.

Well done Jean, for exposing this inequitable system to public gaze.

Family members wrapped up in the care of the disabled know they are saving the government heaps of money but rarely do they get to see how much money. Its pretty grim when you compare invalid children and adults to the "well-off" aged care system which everyone agrees is chronically underfunded.

Jean, I agree, the burdens carers and their families carry are huge, and largely unacknowledged. There is excellent support available for some, but not for all, and it seems a virtual lottery who gets support and who doesn't.

Can you imaging rocking up at a hospital with a broken leg and being turned away because this month’s broken-leg fixing quota has been met? That's pretty much how support for disability support seems to be divvied up.

Care in the community is fine in principle, but in practice it’s often meant no care at all beyond what families can provide. It needs to be properly resourced, and based on need not a fixed pool – for the aged, the disabled, and the mentally ill

Yes Jean, I also say thank you for the care that you give and the pressure that you take off limited funding and resources. I would like to see two things:

I would like all the carers in the Sydney Metro area to pick just one day per year and take the person/s they care for to their local hospitals and clog up the system. Demonstate just what would happen to the system if all the carers just threw their hands in the air and shouted out "I've had enough". That might wake a few politicians up. Maybe if carers took all the people they care for to Nauru, Christmas Island, and Ashmore Reef we'd see some Australians falling over themselves as they rushed to assist you.

I would also like to see the AUD$7.2 billion that is spent each year on multiculturalism redirected to carers and other worthy causes. Those interested in multiculturalism could take up postitions at railway stations and other places and seek donations from the general public.

Aqvarivs, If you are a full time carer of a child with disabilities, single parent (the other parent left because they couldnt cope) and unemployed, how possibly could you afford 'insurance' against so called 'accidents' such as a child with disabilities....sounds like you as a citizen are not in favour of government help for families in this situation?