A few people have asked for more details about the recent spend-fest of DADHC, while most of us cannot access respite this is how they chose to spend the money from "stronger together" - on their own staff!! The $466,000 was for a five day Case Management Induction from 16-20 June at Novotel in Homebush. 350 staff attended, 269 were accommodated at the venue - including those who lived within easy commuting distance. Cost was $466,000 all meals and accommodation provided by DADHC. Shame on them!

Just what we need - more Caseworkers - that's right they're recruiting more of them - more money wasted on yet more useless Caseworkers who cannot/will not do their jobs. We need more Caseworkers like a hole in the head.

For those of you who have had the pleasure of accessing DADHC Caseworkers, do you think they are worth spending half a million on?? I certainly don't - unless it's for redundancy pay.

We endorse the need for a CIS.
Not enough is known by the general public about Parkinson's, and an education/awareness campaign would be helpful.

http://www.parliament.nsw.gov.au/prod/parlment/hanstrans.nsf/V3ByKey/LA20080829

This is a link to the NSW Parliament Hansard, August 29.
Scroll right down to the end and see what we are up against.

Kristina Keneally uses threats of cutting disability services saying unless NSW electricity is sold off there won't be money for disabled. She is targeting safe Lib areas.

Was 'Stronger Together' only on the proviso electricity was sold off?

No wonder we can't get services in NSW for those with disabilities and so many families are in crisis. 16-20 June DADHC held a conference at Homebush, staff were accommodated at he Novotel Hotel, all meals were provided at a whopping cost of $466,000, that's right while most of us struggle to cope without respite DADHC instead pay for their own staff to have respite in luxury at a cost of almost half a million dollars! How's that for appropriate spending of the "Stronger Together" funding! Shame on you DADHC.

Carers deal with grief, loss, stress, pain, anxiety, uncertianity and so much more there really are not enough words to describe the intense feelings that take place in a caring role.

As a carer of three girls with special needs, I'd lay down my life for them, they are my everything, they make my world shine with their love and humor and zest for life. They are my hero's, the difficulties they overcome to achieve even the smallest of tasks reminds me of just how special and precious they are as individuals.

I wish they didn't have to struggle, that they didn't have to face the rejection form the so called normal people in society and then face the disappointment of services promising the world and delivering nothing.

As a carer I find my self on an emotional roller coaster up and down like a yo yo happy one day tearful the next, stressed the next and well you get the picture

I don't want to drop my kids off with a stranger or put them in a respite centre coz its cheaper for the government. We wouldnt do that to normal kids why mine?

I don't want to have to beg for support and ask for services that are my children's right to have under the disability act, because then as a carer I feel like a beggar. I'm proud of who we are, we shouldn't have to beg and borrow to get by....

Carers need to be supported they need to be recognized for what they do. Carers are full of spirit and carry with in them so many hopes and dreams, some of which are never fulfilled because of our caring role.

If I had one message to send to governments it would be LISTEN to our hearts and hear the cry of a carer, send us services that work not legislation that never makes it past the paper its written on. Stop talking about what we need, take action its long over due

I hope those who are trying to develop a means of assessing the impact will take into account the impact on children of parents who become disabled or chronically ill. Inevitably, the financial strain that this leads to also impacts on the opportunities for the children as they grow into adulthood.

Everything that is not a necessity becomes unlikey or impossible - music lessons, sport, outings, holidays, technology, icecream etc, and even clothes that one would choose, rather than whatever's cheapest. This is especially tough on teenagers. It is not about having things - it is about being able to particiapte in community life, make & keep friends, build connections for now and the future, have good self-esteem, have opportunities like everyone else your age.

I can accept reluctantly for my husband and myself that our future will be financially tougher than we ever planned for it to be - even though we did all the right things to be independent and self-funding, until disability jumped in the way. It seems very unfair, however, that our children will have their futures impacted by this. This is a cost that needs to be taken into account when policy makers think about how much is a fair amount of support for families living with disability or chronic illness.

Both of my children, and myself have been through a period of depression. Apart from medical treatment, the only other support we were offered was counselling. While counselling has its value for some people in some situations, the irony is that, for my children especially, they weren't interested in counselling - they just wanted to be able to go back to enjoying some of the things that sued to be part of their live until our financial situation changed so much. We could have accessed many hours of counselling at sdignificant cost to the government, but for a teenage boy, $100 to replace a broken MP3 would have been more effective and much cheaper.

Another impact that needs to be taken into account is the cost of the wear and tear on the main carer. I have seen my own health gradually dteriorating, simply through getting more and more worn out, and no end in site. This is frightening, because of where we will end up if I go under, too. It is also gfrightening because my husband is only in the earyl years of his illness, and I need to last out a long time yet.
If I could give up work, that would save my health - but then we would be living in real poverty, and our what then for our children? We are over a barrel - and we are people who have been responsible and planned for an independent future. If we are reduced to this, then many other famileis are living in serious poverty. Shame Australia - what sort of community are we building?
Perhaps this is a shock to me because I have worked most of my life in the 'caring' professions and in the health/disability area, and I now understand I had no idea how tough it is for families- even the ones who were comfortably off - until we found ourselves in this boat. Carers are not whinging or grasping - it really is tough, and the system adds to the pain, for all the rhetoric.

In my opinion and from my own experience I feel caring for a fully dependant disabled child into adulthood creates such a strong bond between parent and child that it is difficult to assess the impact this has on one's overall emotional wellbeing.
Not enough recognition of the strong relationships that have developed out of the very structure of such atypical lifestyles is taken into account when policies are made and dictated to us by academics who see us as faceless members of a community that is constantly needing.
Emotional impact is seen as a barrier to be overcome and the adage 'time will heal' is seen as a given by those who have been able to live a life of their own making.
From my experiences I get the impression people think I have 'gotten used to it', have 'moved on', have learnt self preserving skills that shield me from any emotions I would have as a 'normal' person facing an upheaval in their life.
I should have developed a way to disengage myself from the needs my daughters demand of me and have built a life running parallel to theirs fulfilling my own social and career ambitions.No thought has been put into how this might have been done.
On one hand I have been asked to dedicate my whole life to caring for my daughters every need, putting them first in every aspect of our day to day lives, running between medical and therapy appointments, adapting my own behaviours and habits to blend with theirs so as not to aggrevate their unusual autistic concepts. Be expected to be their advocates, train outside caregivers to read my daughter's attempts at communication, fill in endless piles of paperwork, cook, clean, monitor and record seizures and medication etc. etc. On the other I am being told to put their needs aside and accept the inadequate and often poor quality support offered.
I am expected to be immune to any impact watching my daughters suffering might have on me because it is 'they' who are suffering not me. I am being told this by 'experts' sent to counsell me.
This in itself has created another set of emotions that I would not have otherwise developed if I had not been put in these situations. I feel powerless and worthless. It puts great strain on an already fragile existance and creates the strong distrust I have of anyone who has not had direct experience as a carer.
I resent the experts pulling my strings but I must accept what I am given because I can't do without it. I feel that I and my daughters are seen as nothing more than feeble minded charity cases in our society who should be grateful for the bits thrown our way.
This will continue to be the case as long as the current way carers in Australia are dictated to. I will remain in the 'victim' role asking for more and more because victims are dependant and needy.
It might be too late for me to be retrained but I am willing to give it a go if the government is williing to change it's mindset and listen to carers instead of the academics who only think they know what we need and why we need it.

I endorse Norman Marshall's proposal for Carers' Impact Statements. It's essential to take a holistic view of the costs and benefits of drug availability, as with other factors affecting both carers' and the people suffering from disease or disability. Having access to the full spectrum of modern drugst, via PBS, would help Parkinson's sufferers, in particular, and their carers, to cope better. It would reduce hospital stays and improve their quality of life.