Topic Tuesday // Feeling excluded in a loved ones treatment journey // Tues 21 Aug, 7pm AEDT

Once I became aware of the Australian Government’s Carer Recognition Act, I realised that over the years committed carers have been chipping away at prejudice and isolation. I’ve learned that carers now have their rights enshrined in law. The Act, which became law in 2010, has had a direct impact on how services must include listening to, including and meeting the needs of carers.

The Act’s Statement for Australia’s Carers (exactly as it reads in the Act):

1. All carers should have the same rights, choices and opportunities as other Australians, regardless of age, race, sex, disability, sexuality, religious or political beliefs, Aboriginal or Torres Strait Islander heritage, cultural or linguistic differences, socioeconomic status or locality.

1. Children and young people who are carers should have the same rights as all children and young people and should be supported to reach their full potential.

1. The valuable social and economic contribution that carers make to society should be recognized and supported.

1. Carers should be supported to enjoy optimum health and social wellbeing and to participate in family, social and community life.

1. Carers should be acknowledged as individuals with their own needs within and beyond the caring role.

1. The relationship between carers and the persons for whom they care should be recognized and respected.

1. Carers should be considered as partners with other care providers in the provision of care, acknowledging the unique knowledge and experience of carers.

1. Carers should be treated with dignity and respect.

1. Carers should be supported to achieve greater economic wellbeing and sustainability, and, where appropriate, should have opportunities to participate in employment and education.

1. Support for carers should be timely, responsive, appropriate and accessible.

This Statement profoundly affected how I approach a service, and changed my expectations. I felt empowered!

Qu: Have a read through the ten elements of the Statement above. Do any of them resonate with you? Could you choose any that you find especially helpful to you?

amm @Former-Member, @Lynne1

after leaving the hospital , my husband did not take the sickness pension and he had cancelled all help

so we have been going on our own for the last 3 years

My parents and I are often excluded from my brothers' care...and my parents are even legal guardians for one of my brothers due to his mental incapacity

I do believe historically psychiatry actively excluded carers to their own detriment and at great expense to health services. I was appalled by some of the things I was told.

Gosh @Shaz51, that's really difficult. Have you been able to connect with supprot for yourself along the way? It's a lot to manage alone and often carer's need support too.

Welcome to the discussion @Yumbo. It would feel so frustrating to be kep on the outer of your brother's treatment. What support do you think you would have liked to have had as a sibling to support you in your caring role?

This is the first I've heard of this Act. I've just looked it up on Legislation.gov.au and will read it.

Do you quote it when you experience resistance from professional service providers?

That's tough, Shaz51. The caring role can be isolating and lonely, it's been that for me too. Even so it has been heartening to learn the legal rights that carers should be able to receive. It was interesting to me that the Act used the word 'should'; stronger than 'may', or 'can', but not yet 'must'. But, we're on the way to being recognised, thanks to many people who've lobbied and fought for these changes, especially over the last 20 years or so.

The history of the mental health system has certainly come at a cost to family and carer involvement @Former-Member It's good to see things like the Statement For Australia's Carer's @Lynne1 paving the way for change.

Hi Yumbo, you've chosen well. To me, this statement covers a great deal. It's so helpful, such a relief, to be respectfully included as a partner. Sometimes I've felt that service providers might be somewhat suspicious of carers, seeing them inappropriately involved, when the vast, vast majority are motivated by love and a willingness to contribute in a positive way.