Dear Felicity, its very hard living in a community that worships beauty competence, independence and wealth and to have none of those things. We ceratinly do need some help, but help that builds up and sustains, not just that gets rid of someone - but where we all get to benefit and grow. My fear is that the demand for respite, and for just any accommodation will be responded to and we will have services that are large, depersonalised, crowded and aweful - and our loved ones will end up there, so that we might have a better life. Our decisions today affect the generations behind us, and what kind of services will they find because of what we demanded? I hope you get the help your son really needs, and that allows you and others to relate to him positively so that you both get a life.

How strange desert, I didn't see anywhere that Felicity was asking for anything but support because she was living a difficult life and you started to preach that she should beware what she asks for.

You are assuming that you know what is in her heart and mind?
I feel an agenda coming on.
The point is what agenda?
There are no support services. There is no accommodation.

You advocates are so busy driving your isolationist agendas that you don't actually have time or inclination to lobby for services for the other 98% of people - you know the ones, who are in the community struggling with nothing. Living with aging parents who are forced to be lifelong carers, too old and tired to give them this 'inclusion' that supposedly living in the community away from anyone else who might be considered by you as devaluing to them.

I never hear a word from you all about the thousands of people with disabilities and mental illness who reside in sub standard boarding houses, in abject poverty.

If you took 20% of your time away from driving policy to nowhere, we would not have this mess.

If you all spoke out about the national disgrace that is chronic underfunding instead of concentrating on your idea of perfection for the 2% you actually assist, perhaps we would not all be so desperate for assistance?

$42 million was spent on advocacy in 2005 - what did we get?
In Victoria it was that stinking disability bill.
Hoorah it was the beginning of the end because families have had enough.

You people are desperately trying to hang onto lucrative incomes at whose expense?

I have been saying what Lolita says for decades. Words are not enough, it is action that counts. People who often do not know a disabled person are making decisions that impact on thousands of lives. We need to get our disabled family members out there, let them be seen and abandon them - if only for a short period. Domestic heroism goes unnoticed - we must make it more obvious. Industrial action on the homefront!

How many can remember the 1950's and the debate that was raging around state aid for private schools? Governments remained unresponsive, so in the early 60's a sit-in was organised in Goulburn where there were at the time seven private schools and one high school. All the private schools closed for two weeks and thousands of children converged on the high school. I was in year 7 at the time, and I was one who sat in the playground where there were no seats available and stood for hours on the queue for the loo. It was enough to show governments that they couldn't cope without the contribution of the private sector, and soon after that, the first grants for private schools started to trickle through. Government funding for private schools throughout Australia is now just taken for granted.

That experience left me with a clear view that it is bums on seats (although as I've just pointed out, there were no seats in this instance) that make the difference. All the lobbying and letter-writing will never have the same impact as a mass sit-in. Yet it is understandably very scary for caring parents of disabled people with high needs, medical issues, the capacity to wander and become lost, etc. The fact remains that it is only a huge demonstration of revolt that will force our elected members into some response to our dire circumstances. I am up for it and I live in the Bennelong electorate. Who else has what Lolita calls the "intestinal fortitude" to down tools and withdraw our labour?

Judging from those post who claim they have no respite and must be at some loved ones side 24/7/365. How much money would be necessary to improve that life? If you want to call the necessity of 24/7/365 of personal care a life? Or are you really talking about more people doing what your doing for you to improve your life. Before going to government for more money, or any money, or forming your own political party you should have more than bums sitting on floors. You will need to reach a consensus on need that can be translated to the general public. Where are the co-operatives? The community homes, as care specific homes run by effected parents? Cost sharing initiatives effected by these parents? Care sharing initiatives effected by these parents?
Not a critique. Just questions. Ideas.

Congradulations Jean!
Great job on telling it just like it is! I'm so proud to be associated with such fine carers as you guys and am really stoked to have recently joined the forum.
Oh! As for Aqvaris, let me just say this to you. I'm a 28yr old Australian with Differing Abilities and took great offence to your inferrence concerning people with disabilities.
Undoubtedly, humanity is inriched by the fact we have people born into the world like myself as you ought to know being a self proclaimed 'nazi scientist' as it was FDR and company that whooped your sorry arses in WW2! And guess what FDR was, A person with DISABILITY!
Enough said.

Hi Dessert
You talk about throwing our children away, thats not want we want,I love my son and would never let that happen.What we need is shared care where parents are part of the team and not shut out as in the past.Size does not an institution make it is the the lack of caring well trained staff and parent involvement that created the horrors of the past.My son went to a boarding school run by Anglicare for a few years he loved it and I got a break, he still tells me that he wants to go to the school where he sleeps there.
What kind of services will he find? The ones we demand if we fight together we will be heard and change will come.All of our children have different needs one size does not fit all and family home can be an institution just as easily as a larger facility don't get me wrong I don't think large is good no more than 30