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

Politicians are very sensitive to public opinion in an election year. Interest groups and industry lobbies form queues to knock on their doors, and 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. But parents, families and carers - who make up the largest bloc of citizens, voters and consumers in the country - seem to be the sole exception.

There are no household names in Australia who speak for parents and carers. The media recognises a Bob Brown on environment issues, or a Tim Costello on poverty, or a Bill Shorten on unions.

But who speaks on the national stage for parents with young children with learning difficulties? Or for families caring at home for a 45-year-old son with a disability? Or for 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?

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

A long-overdue National Federation of Parents, Families and Carers was launched last week in Melbourne (August 8, 2007).

The initiative brings together parents, family members and carers in education, disability, mental health, chronic illness, indigenous communities, 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 or illness-specific parent 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 aboriginal affairs, but not asking aboriginal people themselves.

Home-based carers of people with a disability, chronic or mental illness, and the frail aged, are about 2.7 million people in number. The people they care for are as many again. This vast number of people are the most hidden, ignored and unrepresented community in Australia. Indigenous people are high in need, but their plight looms large in the national consciousness. Carers don’t rate a blip on the national radar screen.

Family carers are not sexy. No politician has ever lain awake at night wondering how to deal with the electoral consequences of disappointing parents 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, families’ issues do not appeal to the fashionable, the glitterati, or pop stars wanting a cause. There is no “Family Carer Aid” rock concert planned for London’s Hyde Park or the Sydney Opera House.

Suzette Gallagher was awarded an Order of Australia medal in the 1990s 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 industry groups?

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