The greatest problem in the ‘disability industry’ is that every person with a disability is placed under the same banner as having the same needs.

If a person had a physical disability acceptance and inclusion with the same opportunities that are available to most, is not only obvious but for most, relatively easy.

Our society provides many wonderful innovative appliances that allow people with physical disabilities the opportunity to live completely, to add to the rich social fabric of our communities.

But… people with severe intellectual disabilities and aquired brain injury need someone with a decision-making capability to be at their side all waking hours, their days are spent being guided, prompted and reminded. We are talking about people who grow into adults adults, middle-aged men and women, whose abilities are often at similar level as children.

Having said this, I believe it is a richer world for all people to be included in our communities, but to even pretend that a severely intellectually disabled person wants or needs or expects the exact same things as everyone else is simply a crock of over intellectualised rubbish that is rammed down our throats by advocacy ad nauseum.

The essence of a person is their ability for thought, conceptualising communicating and their ability to love. Our world, our friendships stem from this. My daughter has the love side down pat, and in her own way is blessed because her world is so uncomplicated, which leaves me, her mother facing a world so more complex because to give her the support she needs, I must be many people and this means there is very little left of myself for myself.

Well said Nell. There are far too many people out there who presume that they have the right to speak for your daughter when they do not know her or her needs. They make your job still more difficult. Some advocacy groups and many old guard activists/advocates are doing more harm than good. They believe that what they want for themselves is what is right for everyone. They keep saying it is the only way forward. When governments (of all persuasions) see this as a means of saving money then they will naturally do so.
The ALP's plans for more 'in the community care because this is what people are asking for' fill me with dread, horror and alarm. So many parents and siblings need some respite help and time out but they are going to be told that the 'extra' help for in community care is going to solve the problem. It's the biggest con out - and a lot of people are going to fall for it. It is going to be supported by a lot of people with disabilities who are able to live intellectually independent lives and who can participate in the social life of the community. Not everyone can do that and they desperately need other forms of care, support and love.
It is time that some of the 'peak' bodies in disability started listening to what people really want - not what they want.

Thanks communicat because my daughter needs acceptance, she needs the opportunity to extend herself, she needs more input than I as a single person can give her, because I am tired; I need some ‘me’ time, whoever me is that has been lost in the everyday struggle of social isolation that occurs to primary carers.

I have forgotten the essence of myself, my friends are ‘free’ their children have left the nest, they go out, they have holidays, ones where they do not still have to care 24/7 for another’s needs. They make decisions about their lives, perhaps as simple as to going out to lunch or to see a play. Nothing in my life is spontaneous, I have to book any moment of ‘stolen’ time three months in advance and still cannot be guaranteed that block of time will be the one I need.
I agree with you dessert, the label ‘carer’ is awful, but it is what society by its very inaction has forced us to become. The expectation that we, the family can support this level of care for decade after decade more often than not sustained by poverty level centrelink benefits is not only despicable, but condemns all you readers of this page. We are lawyers, physiotherapists, teachers, artists, musicians, engineers, journalists, chefs - every profession. Our common link is a simple one; because we love we are damned, because you do not care to step out of your comfort zones to speak out.

You the reader are far less socially aware than you would like to believe you are. I know you will go on to another article and put this page out of your minds. You read this and your level of concern lasts but a moment in time.

You can do one simple thing to help us all enormously. It is simple and easy.

You can DONATE YOUR SENATE VOTE.

It will not change the outcome of this election, whichever party wins the Legislative Assembly will gain government, but it will change our lives. It will give us a voice.

Hi communicat, thanks for your comment.

Very wise commentators often tell voters that we get the government we deserve because we elect them!

The same philosophy is true of the power now wielded by the Disability advocacy sector. It occurs because governments find it suites their agenda, not yours or mine as unpaid care providers. So government curries favour by giving these well paid individuals funds and a privileged place at the policy and planning table, where they arrogantly decide what is right for our loved ones.

What caring families need to do is take a leaf out of the paid work-force book. When they want better pay and conditions they take industrial action, even to the extent of withdrawing their labour. Teachers do it, nurses and doctors do it, police forces do it and they are all critical players in the game of life which is our society.

However, when we ask caring families to take such industrial action, to take their loved ones to their local department of Human Services and declare a 24 hour strike for better pay and conditions, they shrink from such action. It makes no sense because if the carer falls down and breaks a leg the same scenario will apply, its called emergency respite, right.

Imagine the media coverage if such action was taken nation-wide?

Unless and until caring families take positive action to tell governments we are overworked, under paid, exploited and neglected as citizens, nothing will change.

Families who contribute so mightily to the welfare of the nation have the power in their hands if only they have the intestinal fortitude to use it.

Every marginal seat can be altered. How about the Carers in the Prime Ministers seat of Bennalong taking the lead

Bennelong would be a good place to start - but there is a need to acknowledge that Bureau of Statistics figures show that the Coalition has spent more than the ALP - nowhere near enough but still more. It is a myth that the ALP is the 'caring, social welfare party' - figures show otherwise but they continue to be labelled as such quite erroneously.

Rumour (believed to be very well founded) has it that the ALP plans on cutting back still further in some areas of disability funding.(Note their move on the dental care of those with chronic illnesses!)
They certainly ARE NOT planning to give carers any extra support or to provide any additional respite care. They ARE planning to shift things around and make it look like they are offering extra when in fact they, despite protestations from Kevin Rudd, plan to cut back.
Disability is seen as "too expensive" and the responsibility is supposed to go back onto families...who have far too big a burden now. They forget that when a carer becomes ill through overwork then the whole thing can go through the roof and it ends up being even more expensive.
I think I have used up my quota of comment for the day but I'll try and find the actual reference if I can.

Communicat,

The report on government services 2007 says this about funding: Total government expenditure on CSTDA funded disability services was $3.9billion in 04-05 of which state and territory spend was $2.8billion or 72.5%. Of the federal spend of $1.1b just $595million was transfer payments to the states. The remainder was for commonwealth employment services.

The federal government spend on aged care residential,support was $7.1b in 05-06 and the HACC program delivered $1.4b of which the federal contribution was $858million, a total federal spend of $7.9b for aged care services.

When the numbers of persons with a severe or profound disability in each age cohort are compared: 428,000 over 70 and 700,000 under 65 (rounded), it can be plainly seen where the injustice lies?

The federal propaganda on its contributions to people with disabilities claims they spend $12.8b, but Brough’s tricky press release includes welfare payments such as disability pension $8.7b, carer payment and carer allowance$2.4b to make the figures look better. He conveniently forgets to include aged care pensions of $29b in the aged care spend total, which then blows out to just under $37b.

No-where am I saying that the states are off the hook, far from it. The states play the same game by claiming ‘ since we came to office we have increased disability funding by 60%, 80%, etc. What is clear is that doubling almost nothing budgets still only give us almost nothing budgets! This is why over 92 per cent of all disability cared accommodation is still delivered by families. Exploitation Maximus!

Population benchmark funding means that disability services need to deliver $10,9b of recurrent funding now. This only services 1.8% of the disability age group. Neither Labor nor Coalition are worth voting for unless a major shift in policy occurs.
Hell is likely to freeze over first, so Carer families need to say no to both of them and cast a protest vote. Both Rudd and McLucas steadfastly refuse to give a date for a policy release. Coalition have no policies either!