Speech by The Hon Jenny Macklin MP

Launch of the Carer Engagement Project Report – Adversity to Advocacy: The Lives and Hopes of Mental Health Carers

Location: Parliament House, Canberra

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I would like to acknowledge the traditional owners of the land we are gathered on this morning. And the many carers who have come here today from many parts of the country. Among them, Tony Fawke who recently became the first Australian to be appointed President of the World Federation of Mental Health. A significant achievement and an acknowledgement of Tony’s great advocacy for carers.

We are here today to acknowledge a landmark achievement – the launch of Australia’s first ever national survey of mental health carers. It’s the culmination of a nation-wide project, funded by the Australian Government, reaching out to 1500 carers inviting them to share their experiences – the struggles and hardships that define their lives as carers for people with mental illness. It is a report with many and varied stories but a common theme – the courage, sacrifice and tenacity of parents, siblings and children who share the terrible highs and lows unique to caring for someone with mental illness. The relentless responsibility, the hard work, the physical, emotional and financial cost.

The lives of 1500 carers are laid bare in your report. Like the typical day in the life of one thirteen year old carer, looking after her Mum and her brothers and sisters: 6.00am – Get up and have a shower; 7.00am – remind Mum to take her medication; 7.15am – make everyone’s breakfast; 7.45am – get stuff ready for school; 8.00am – clean up the kitchen and make all the beds; 8.10am – leave for school; 3.00pm – return from school and see how Mum is; 3.15pm – begin cleaning; 4.00pm – chill out and do homework; 5.00pm – prepare dinner6.00pm – clean up dinner and look after the younger kids; 7.00pm – tell Mum to take her tablets; 8.00pm – my time…

We have to ask ourselves: is this a childhood or a child taking on an adult’s responsibilities far too soon? These stories are now being told, thanks to your report. And they have been distilled down into 15 key issues which most concern carers. I won’t have the opportunity to address them all here today but I can assure you that your issues have been heard. And we will use this rich and valuable data to shape our policy and programs for mental carers and for consumers.

One of the issues raised time and time again was the need for greater acknowledgement, recognition and respect for carers. Recognition, respect and understanding at all levels – from friends, teachers, school mates, police, doctors, nurses – the whole community. Too often, carers of a person with mental illness come up against stigma, discrimination and insensitivity. They have to overcome many myths and misunderstandings – for example: mental illnesses are not ‘real’ illnesses; people with mental illness are ‘weak’ and could ‘snap out of it’ if they wanted to; and people with mental illness are unpredictable, violent and unable to hold down a job.

We know there is much work to do to change these stereotypical views. As a starting point, on Monday when we launched the start of Carers’ Week, I announced the Government would lead the development of a National Carer Recognition Framework. The framework will recognise, in legislation, the role played by carers. It will encourage community understanding and recognition – through national acknowledgement of the commitment and dedication of carers. And it will set down national goals – to give carers the opportunity to enjoy good health and wellbeing, and to fully participate in community life.

We also know that many carers experience significant financial disadvantage. Your survey reports that many carers would like to work, but their caring responsibilities and the episodic nature of mental illness make this very difficult. Recognising the struggle many carers have to make ends meet, in September we delivered pension increases to more than 140,000 carers. In addition, around 500,000 carers have received an annual, ongoing Carers Supplement of $600 for each person they care for.

Other issues raised by carers in the survey focus on the accessibility, adequacy and appropriateness of support services. In my portfolio, we are expanding and improving support services. This includes extending the reach of the Personal Helpers and Mentors program provide intensive, one-on-one assistance to help the recovery of people whose lives are affected by severe mental illness. We have 155 PHaMs sites around Australia, with more to come on line in 2010. And just recently I announced a further $10 million over three years for seven remote sites across the country.

To meet the significant demand for respite, we are working across all levels of government to improve and expand respite services. Under the new National Disability Agreement, an additional 10,000 respite places will be provided across Australia. And through our Mental Health Respite Program, we are trying new approaches to specifically meet the needs of mental health carers. The programs in my Department are currently being evaluated. This report will be a valuable input.

We know there is more to do. Your stories will lead the way. I want to return briefly to the words carers of people with mental illness included in your report. The way they describe their lives. The unrelenting weight of responsibility, feeling powerless, being worn down, limping through with no life of their own. I want to thank them for giving their precious time and energy to the survey. And assure them that their contribution is recognised and respected. I would now like to formally launch the Adversity to Advocacy: The Lives and Hopes of Mental Health Carers Report.