Emma McBride (Dobell, Australian Labor Party) Share this | Hansard source

I rise to speak in support of the Social Services Legislation Amendment (Payments for Carers) Bill 2018. I'm very pleased to follow my colleague and friend Emma Husar, the member for Lindsay. I know this is something that is very close to her heart.

This bill introduces a family income test of $250,000 for the carer allowance and the carer allowance child healthcare card from 20 September 2018. Many of my colleagues have addressed the technical aspects of this bill. In the time that I have, I'm going to turn to carers, sharing their stories in their own words.

I'm a pharmacist, and for almost 10 years I worked in the mental health in-patient units at Wyong hospital in my electorate of Dobell. It was when I sat on the other side of the desk, when I became a carer, that my view of the health system was flipped upside down. So much was invisible to me until I became a carer. As my mum says, you don't sign up to be a carer; you do it because you love them.

I live in a place where people care. I have experienced that as a pharmacist working at Wyong Hospital, as a mental health worker and as a daughter. My experience is backed up by the numbers. The Australian Bureau of Statistics undertook a survey of disability, ageing and carers in 2015. At that time, there were 2.7 million unpaid carers in Australia. Over 850,000 Australians were primary carer for a person with a disability. Almost all primary carers provided care for a family member. More than two-thirds of primary carers were women, and the weekly median income of a primary carer was 42 per cent lower than the median income of non-carers. More than half of primary carers provided care for 20 hours per week or more. According to the 2016 census, there were nearly 34,000 people on the Central Coast of New South Wales—where I live—providing unpaid assistance to people with a disability. In December 2017, 9,346 people on the Central Coast received the carer allowance and 141 received the carer allowance (child) health care card.

To recognise and support carers on the Central Coast, I hosted the 'Walk in my Shoes' carers conference in December last year. More than 300 carers came along for the forum. We held workshops with NDIS, Dementia Australia, Carers New South Wales, Candles Cancer Support Group, Younger Onset Dementia Social Support, Centrelink, My Aged Care, Health Direct Australia and more.

I would like to share with you the story of Greg, a male carer. He was one of the presenters at my conference. Greg works with Candles Cancer Support Group and Men Care Too on the Central Coast. Greg didn't know he was a carer; he thought he was just helping his mum. It wasn't until his mother, Lyn, started losing mobility from a degenerative spinal condition that he realised he was doing more than just being a good son. These were Greg's words:

It took me a long time to acknowledge and recognise that I was a carer. I noticed Mum's health decline and her mobility had changed and that's when I started to look for outside support.

Greg said it was when he started to look for support that he realised the challenges carers face and wanted to make a difference.

I've done a lot of community work so I thought I was linked in and aware of the support that's available, but I found it daunting and overwhelming at times.

There are around 1.2 million men in Australia in caring roles, which is roughly one in 10. So there are a lot of blokes out there caring, but there is not really a program or service out there for them. Greg said peer support for men is an important part of the caring journey. Greg said:

We focus a lot on how to fix things, but when you're caring for someone, you can't always fix things. You may feel like you're not doing something right or that as a man you should be strong and stoic, but it is not always possible to do that. It is important for us to recognise that and talk to other people, our mates and the people around us. It makes it that little bit easier, takes the weight off your shoulders. There are around 13,000 blokes that are carers on the coast, so there's a lot of us around.

I want to turn to the value of care. According to a report by Deloitte Access Economics the economic value of informal care in Australia, the replacement value of unpaid care to the Australian economy in 2015, was $60.3 billion, and unpaid carers provided 1.9 billion hours of unpaid care in that year alone.

I'll turn now to the impact of the changes briefly. The carer allowance, at $127.10 per fortnight, is relatively small in recognition of the significant contribution made by many carers. These payments have not previously been income tested. The proposed income test is fixed and will not be indexed. It is anticipated that around one per cent of the carer allowance recipients and healthcare provider holders will be adversely impacted by this change.

Labor supports this change because the savings generated by these changes will be put towards paying for services to carers through the Integrated Carer Support Service. However, these services are now months behind schedule. Australian carers were meant to benefit from the increased supports provided by the Integrated Carer Support Service from July this year. Instead, this government is making them wait longer and holding back the payment of phase 1 of the program. We will hold them to account. If the government were serious about supporting carers they would have brought this program forward months ago instead of forcing Australia's hardworking unpaid carers to wait.

This government must do much more to support carers in our community, carers like Neville. When I met Neville, he came to talk to me about having to fill in more forms about his wife's care. Her circumstances wouldn't change; they couldn't get better; there was no way that they would improve. He had been a carer to his wife, Judy, for over 25 years after a brain injury following a cardiac arrest in 1992. Her care needs are high and Neville, at nearly 83 years of age, is still doing everything he can to make Judy's life at home more comfortable. Neville continues to be an advocate for carers and is a former president of the Australian Federation of Carers. He needs help, and Judy deserves it. Judy was approved for a level 4 care package in August last year but the funding has still not been provided. They are desperate. They need home modifications to the bathroom and additional physio services which they can't access at her current level. It's just not good enough. And it's not only the aged and carers who are being let down by this government. People with disabilities and their carers are also being poorly served by a desperately under-resourced Centrelink and a botched NDIS rollout.

I want to now turn to Joanne. Joanne is the carer of her sister Lexanne. Lexanne suffered a stroke 18 months ago which left her with limited movement in her right side, blind in one eye and confined mostly to a wheelchair, with leg braces for walking very short distances. She can't push her own wheelchair but, due to her vision impairment, an electric wheelchair is not an option.

When Lexanne moved in, Joanne became her primary carer, but at every point she has had to fight for help. Lexanne's application for the disability support pension took more than six months to process and was rejected. The decision was finally overturned on appeal, but this process took several more months. In the meantime the financial burden fell to Joanne, who works full-time at a local train station.

Lexanne's NDIS experience has been equally poor. Her first plan included around $30,000 for home modifications. Despite this, an OT's report and quotes were lodged, but more than nine months passed before they were processed, by which time all the quotes were out of date. During the review, new quotes were approved and she was placed in the queue for the building contractor, but, while she waited, all the funding for the home modification was removed in her annual review for a plan because it hadn't been used.

I want to now, in conclusion, go to the words of my mother. My mum was, until very recently, a full-time carer for my father, Grant, who lived with younger onset dementia. These are the words that my mum wanted to share with you tonight: 'People say it's a tough job being a carer. Why would you do it? Basically you do it because you love them. So you do what you do. People don't sign up to be carers. It just happens. For people with dementia, you learn that they are more than their memories. They have an emotional memory and an emotional relationship. Grant can experience joy and happiness as well as frustration and disappointment. He is participating in life.'

I am sorry to say that I constantly hear cases like the ones I've mentioned from too many of my constituents. But this government doesn't seem to listen, doesn't seem to care and has no sense of urgency. Australian carers and those who care for them deserve so much better. Thank you.

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