Strength in numbers: carers standing united

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu


By Jenny Shale

Posted Thu Aug 9, 2007 8:12am AEST
Updated Thu Aug 9, 2007 8:43am AEST
Grabbing the attention of media and politicians to the plight of carers and those with a disability has been an uphill struggle.

Grabbing the attention of media and politicians to the plight of carers and those with a disability has been an uphill struggle. (AAP: Sam Mooy)

Politicians are very sensitive to public opinion in an election year. Interest groups and industry lobbies form queues to knock on their doors. The politicians are keen to meet them to make sure no important group is overlooked when promises are made.

Except for families, that is. Because despite the constant reference to families by politicians, there is no national voice in Australia for parents, families and carers.

Every industry and professional interest group has a national voice to get in the ears of government - except parents, families and carers who make up the largest bloc of citizens, voters and consumers in the country.

One result of this vacuum in representation is that there are no household names in Australia who speak for parents and carers. The media recognise a Bob Brown on environment issues, or a Tim Costello on poverty, or a Bill Shorten on unions.

But, how do parents with young children with learning difficulties get their voice on the national stage? Or families caring at home for a 45-year-old son with a disability? Or siblings trying to navigate a way through the aged care system to find appropriate support for a frail and elderly mother who still wants to live at home?

As one young woman who has spent her life in the care of the state said to me: "All my life decisions have been made about my life by people I do not know, and who don't know me. I want to have MY own opinions heard and acted upon. I want to have a say."

Popular current affairs programs like to feature struggling mums and dads dealing with difficult kids, rapacious insurance companies, or out-of-touch municipal councils. But their stories are always human interest profiles with anonymous parents. They never feature leadership on behalf of parents and family members. That is because there is no leadership voice to draw on.

A long-overdue National Union of Parents, Families and Carers is being launched this week in Melbourne.

The initiative brings together parents, family members and carers in education, disability, mental health, chronic illness, Indigenous communities, multicultural, child care and aged care sectors - areas which have traditionally been separate from each other in representation.

There are lots of parents and citizens committees and disability-specific support groups around the country. Their localised and often informal character is important in many communities, but without a national connection to the thousands of like-minded groups of parents around the country, their impact on politicians and policy makers has been weak.

What's more, families with members with a disability or a learning difficulty or chronic or mental illness tend to be pre-occupied with getting through each day, and have lacked the resources or time or expertise to allocate to advancing their long term interests.

In the absence of institutions to represent these families, governments have looked to service delivery agencies and research institutes for policy advice on family matters.

This approach has been understandable but deeply flawed. It is like governments asking service providers and academics for policy advice on Indigenous affairs, but not asking Indigenous people themselves.

Home-based carers of people with a disability, chronic or mental illness, and the frail aged, number some 2.7 million people. The people they care for are as many again. This vast number of people are the most hidden, ignored and unrepresented community in Australia.

Carers are extraordinarily high in need, but don't rate a blimp on the national consciousness, because their voices are never heard. Family carers are not sexy or topical. No politician has ever lain awake at night wondering how to deal with the electoral consequences of disappointing carers of people with a disability.

No university students have ever taken to the streets in protest over the plight of the many full-time carers who receive an income that is one quarter of the aged pension.

Unlike the green movement, carers' issues do not appeal to the fashionable, the glitterati, or pop stars wanting a cause. The carer's world is a very private world. It unfolds within the home, not on the TV news.

Suzette Gallagher was awarded an Order of Australia medal for services to disability after pioneering innovations on behalf of her son. She believes the organising task in uniting parents, families and carers is difficult but essential.

"This is like a union, because we have to unite lots and lots of otherwise voiceless people", she says.

"We want our national voice to be as prominent in public life as ACOSS, the ACTU, and the National Farmers Federation. Nothing less. Only lack of organisation stands in our way".

Can ordinary parents and carers come in out of the cold and develop a voice that is as important as these groups?

Politicians of all stripes beware. The sleeping giant is waking.

Jenny Shale is a Queensland parent of a child with cerebral palsy and was Australia's Social Entrepreneur of the Year in 2005. She is the inaugural president of the National Union of Parents, Families and Carers.


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