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The Forum > Article Comments > At last - a national voice for parents, families and carers > Comments

At last - a national voice for parents, families and carers : Comments

By Jenny Shale, published 15/8/2007

No politician has ever stayed awake at night wondering how to deal with the electoral consequences of disappointing parents of people with a disability.

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Let's hope the giant awakes and speaks with a voice of thunder for carers of kids with disabilities. Firstly, we need to stop the rot that mainstreaming intellectually disabled children is ok. It's like putting a D grade player into the Test Team and expecting them not be their team mates. We need more "special schools" teaching life skills - how to handle money, cook, grow a tomato; more group supervised community housing - which parents can assist the transition of their child into while alive - not the crisis which occurs all too often when mom/dad drop dead and little John/Mary - age 50+ not only has to deal with grief but a whole new life. Fifty or sixty years ago - there was only one place for intellectually disabled children - home or an institution - many unselfish parents who chose home have had the constancy of unremitting care for decades. Now, too scared too die because there is no certainty of little John/Mary's future. A Society is judged by how it treats those less fortunate. Meanwhile government after government, who represent our society, refuse to remind society "there but for the grace of God go I".
Posted by hijacked, Friday, 17 August 2007 8:05:28 PM
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I hope the NUPFC lends its support to the Carers Alliance formed and now awaiting federal registration in order to contest seats for the coming Federal election. The Carers Alliance seeks to attach a political wing to the decades long struggle for services and support for families caring for a family member who is either disabled, mentally or chronically ill or impaired by frail-aged.

They've tried everything else --- enough lobbying and unedifying media exposure of their private lives as the only way to secure services and throw a spotlight on the plight of family carers of severely and profoundly disabled family members.

Check out Carers UK website see the achievements of carer activism (see) --- While Carers UK does not donate to or actively promote any political campaigns it does inform of these carer campaigns in newsletters and on their website something sadly lacking here in Australia. Compare our carer organisation website with Carers UK and you'll see what I mean -- being apolitical is one thing but refusing to inform other carers of activist carer campaigns means being satisfied with the status quo --- in my opinion this is not good enough.

Because of Carers UK, legislation now enshires the rights/entitlements of unpaid family carers to have supported accommodation and services for their family member with dependent disability.

In Australia parents and families provide over 90% of the operational/practical side of caring, many of you live that reality and all that it entails. However, until there is funded parent-carer advocacy nothing will change and there will never be a seat at the policy table to inform the needs of families caring for a family member with dependent disability.

A long-term solution to the crisis in disability support, services and accommodation is population-based benchmark funding which is the formula used for aged-care services, child-care services and education. Without that formula parents will continue to go to their graves without the peace of mind of knowing that their much loved and cared for son or daughter will have a place to live with quality care and a happy life.
Posted by the lairymoo, Saturday, 18 August 2007 8:46:21 AM
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Lairymoo is correct - population benchmarking is the only way to ensure that carers of disabled adult children do not suffer the vagaries of politicians whose policies ensure a large voter base is satisified, usually via the hip pocket or fear politics. The current 3 year term for our Federal government ensures that our country is governed for 2 years, the 3rd year seeing only knee-jerk reactions to the latest polls or grand gestures that will never be adequately funded after the election is won or lost. The unfortunate parent of a disabled child can never hope to be any more than a minor inconvenience to a poll driven politician. Parents are desperate for some reassurance that their child will be given the opportunity of assisted accommodation before the inevitable death or disablement of the only carer they have ever known. Is this asking too much of an affluent society? It appears that this is the case as the Howard government has chosen to ignore the recommendations of our Senate in not substantially increasing joint funding for sepcialist accommodation for adult disabled children. Demonstrating bipartisan solidarity our politicians seem happy to accept salary increases above the cpi but only to offer increases way below the cpi for acutely under funded disability services, chiefly in the areas of accommodation. We have polulation bench marking to ensure that our elderly have some reassurance that their needs will be met with some measure of confidence and dignity if they require nursing home care. It appears that this will be the only way this same assurance can be afforded to parents who have sacrificed their own emotional and financial security in raising a severly or profoundly disabled child in a society that turns its back on their heartbreak.
Posted by nickybirman, Saturday, 18 August 2007 12:22:43 PM
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Australians take for granted that places and services exist for their disabled fellow citizens. When they learn otherwise, they respond with disbelief and outrage. Australians are by and large fair-minded. They wish their taxes used for the common good and expect that those less fortunate than they are will be supported by those taxes. It is our non-representative governments which fail to realize those expectations. Let us hope that the NUPFC will give voice to our expectations and needs with deafening resonance and that the Carers Alliance will make our governments just a little more representative.

Were I to live in a third world country, I would care for my disabled son until I died. I would hope that one of his siblings would take over his care after I was gone because there would be no government services. What is different in the lucky country? Parents of disabled people in Australia are faced with an appalling choice: either to relinquish their beloved sons and daughters to a service system that has no place for them, or to ask the siblings to assume the caring role. The distress I see in my fellow ageing carers is palpable. The sense of abandonment and exploitation is overwhelming.

There was no place for disabled people in Germany in the 1930s. We like to think we are have a superior moral code, so we leave our disabled people at home with their parents, even if those parents are in their seventies and eighties. After they die, there is still no place for the disabled person to go, unless he/she is the lucky one-in-twenty person to score an accommodation placement. Other comparable countries have found ways to meet the needs of their disabled populations- why is our affluent country decades behind?

Roll on NUPFC and the Carers Alliance - you are our hope for a more equitable future.
Posted by estelles, Sunday, 19 August 2007 12:06:51 AM
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There is little hope the plight of 2.7 million carers and those for whom they care, will receive any attention at all if the lack of response by forum members to the issue is indicative of the general population. Are forum members so "fashionable", the plight of 10% of our population goes unremarked? The lack of response from carers is understandable. To poor to have IT; to worn out as ground-hog day is the reality.
Posted by hijacked, Wednesday, 22 August 2007 7:46:26 PM
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