All care, plenty of responsibility

Posted on 21 Aug 2023

By Greg Thom, journalist, Institute of Community Directors

There are more than 2.65 million unpaid carers in Australia. Yet even though one in nine Australians are selflessly looking after the needs of loved ones in some way, many feel they remain largely invisible.

That was the key call out from not-for-profit advocacy body Carers Australia when it appeared earlier this month before a federal parliamentary inquiry into the recognition of unpaid carers.

The peak body for carers was invited to share its views on whether the current Carer Recognition Act 2010 is fit for purpose, including whether it recognises and values the diversity of unpaid carers.

Carers Australia CEO Alison Brook didn’t hold back.

“There's much to say on recognising and valuing the role of unpaid carers,” she told members of the House of Representatives Standing Committee on Social Policy and Legal Affairs.

“We know that, for carers to sustain their caring role, their physical and mental health and wellbeing must be supported. We know that caring can be a rewarding yet demanding—and is likely to be a socially isolating— experience.

“We know that carers rarely prioritise their own emotional and physical needs over their responsibility to the person or people they care for.”

Chair and Labour MP Peta Murphy said she and her fellow committee members were examining the Act with a view to strengthening and modernising it.

“A lot has changed since the Act was established in 2010 and demographic shifts suggest there is a growing gap between demand for care and the capacity of Australians to take on caring roles,” she said.

Ms Brook agreed.

She said the circumstances of each carer is different and includes a vast array of often complex scenarios.

For example, the age of carers ranged from as young as 12 years of age to those aged 65 and over. The time involved also varied from short-term care to commitments lasting decades, or from care from a few hours a day, to around the clock responsibilities

The challenges carers are addressing run the gamut of mental health issues, physical disability and aged care.

When asked why recognition of carers was so important to them, Ms Brook didn’t hesitate.

“Because the impact on them is profound,” she said.

“They've got double the proportion of the Australian population who live their lives highly distressed or lonely, with chronic health conditions or poor mental health.”

Ms Brook said the consequences for Australia if this army of carers stopped performing their unsung and largely unpaid duties would be significant.

“If they were to stop caring tomorrow and you were to put a paid care workforce in to replace the care that they provide free of charge, the estimate in 2020 was that it would be $78 billion extra a year to be able to replace that care.”

Ms Brook said these figures brought home the fact that unpaid carers are an integral part of society.

“It's not just recognition; it's absolutely a massive part of Australia's social infrastructure that's happening around us, all day, every day.”

“To be frank, being a carer of our daughter has been the most challenging thing that I've ever done in my life. It's also probably the most important thing that I've done.”

Carer, David.

Ms Brook said in addition to the detrimental impact on their health, the commitment of carers also comes at a significant cost to their own financial wellbeing.

Often forced to forgo education and career opportunities, carers earn $400,000 less on average over their working life and were $175,000 worse off in terms of superannuation than non-carers.

Ms Brook commended the government’s commitment to carers, which includes:

establishing the Carer Inclusive Workplace Initiative following last year’s Jobs and Skills Summit.
increasing funding for the Young Carer Bursary Program along with boosting the number of bursaries to assist young carers with education needs.
considering carers' needs within the new Aged Care Act.
establishing the current inquiry into recognition of careers.

However, Ms Brook said there was still insufficient visibility of carers and their needs

“Lack of consistent recognition of the caring role and the impact of not being identified by services they interact with, in addition to limited appropriate and timely respite care and support, are critical structural defects in our health, aged-care, mental-health, disability and social-service systems,” she said.

She cited the example of a doctor ignoring the carer of an adult child with a disability during a consultation, instead focusing entirely on the patient.

“The GP could well say ‘And, Mum, how are you doing? What's the impact of this on you, and can we check your blood pressure while we're here, because I know that this is pretty stressful for you right now?'”.

“It's about trying to bring carers out of the mist of invisibility and into a place where they have their own rights and their own needs and are recognised for their contribution and the consequence of that contribution,” said Ms Brook.

Carers David and Helen, each appeared before the inquiry to share their lived experiences and the challenges they face.

“To be frank, being a carer of our daughter has been the most challenging thing that I've ever done in my life,” said David.

“It's also probably the most important thing that I've done.”

David’s eldest daughter has a severe eating disorder and suffers from a range of mental health conditions.

“It's only when you go through having a loved one with these sorts of conditions that you realise how terrible they are,” said David.

“People live in absolute fear that they will lose their loved one at any time, and that's a reality. We have been in situations where we've been told that our loved one was going to not live, and you can imagine what that is like for a parent. Thank goodness that didn't happen.”

Despite this, David said that in many ways he considers himself lucky.

‘We have a very strong family, and my partner and I work very hard together.”

He said understanding the impact on other family members shouldn’t be underestimated.

“Our daughter has a younger sister, and one of the issues in this sort of area which is important to focus on is the impact that these conditions have on siblings, as well as on parents and broader family.”

Now in her 60’s, Helen gave up a high-profile banking career almost 30 years ago to look after her second born son, who was not expected to live and who suffers from severe intellectual and physical disabilities that require 24/7 care.

It is one of four caring roles she has held across three decades touching on disability, aged care and mental health.

“I am tired, I'm exhausted and I'm frustrated as I feel like we've been here before,” she said, of past efforts by politicians' to better meet the needs of carers like herself.