Carers Deserve Better

Carers Deserve Better  Main Image

30 March 2022

I rise to speak on the Social Security Amendment (Improved Child to Adult Transfer for Care Payment and Carer Allowance) Bill 2022 and to support the amendment moved by my friend and colleague the member for Barton. Labor supports this bill, which will address an anomaly in the process of reassessing the eligibility of carers to receive the carer payment and carer allowance against the adult criteria for those payments when the child they are caring for turns 16. It would also allow carers of a person aged between 16 and 18 who has a terminal illness to continue to receive the carer payment without having to go through the process of being reassessed against the adult criteria.

The bill will extend eligibility for carer payment and carer allowance in relation to a child until the later of the child turning 16 and three months or Services Australia completing an assessment of continued eligibility for carer payments under the adult rules if the required information is provided before the child turns 16. It would extend eligibility for carer allowance, healthcare card only, until the child is 16 and three months, in line with the above. And it will extend eligibility for carer payment for carers of a person over 16 who has a terminal illness until the later of the child turning 18 or Services Australia completing an assessment of continued eligibility for carer payments under the adult rules.

The main forms of financial support provided to carers are carer payment, which mirrors the age pension, currently $987.60 per fortnight for a single person, and the carer allowance, currently $136.50 per fortnight. Eligibility for carer payment and carer allowance are assessed differently depending on whether the person being cared for is aged under 16 or 16 and over. The Adult Disability Assessment Tool is used for those aged 16 and over, and the Disability Care Load Assessment (Child) is used for those under 16.

The change in assessment criteria at 16 is in line with eligibility for the disability support pension, which commences at 16. In general, it is more difficult for carers to qualify for payments if they are taking care of an adult. As a result, a proportion of carers lose access to payments when the child they are caring for turns 16. Before a child turns 16, carers can be reassessed to see whether they meet the payment threshold that applies to adults. This process can start some time, as you would expect, before the child turns 16.

If the assessment is conducted before a child turns 16 and the assessment finds that the carer will not be eligible for ongoing payments, payments cease when the child turns 16. However, if a carer does not engage in the process, payments continue until the child is 16 and three months before being automatically cancelled. Historically, this process was probably put in place to support carers who had not been able to complete the relevant assessment before the child they were taking care of turned 16; however, this process disadvantages people who engage earlier in the process. Extending eligibility for carer payment and carer allowance for all carers of children aged up to 16 years and three months will mean carers are not disadvantaged in engaging in the adult assessment process early. All carers will continue to receive payments until the child they are caring for turns 16 and three months, regardless of continued eligibility.

The government has also indicated it will improve communication with carers of children who are about to turn 16. This includes bringing forward letters about changes in eligibility criteria by three months so that carers will receive them when the child turns 15 and six months.

The changes to the eligibility rules for the carer payment for a person with a terminal illness between the ages of 16 and 18 will mean that some carers will lose access to payments or will need to go through the adult assessment process. This change may be of help to some carers who are taking care of a person who is likely to pass away between the ages of 16 and 18. If the person being cared for survives to 18 then they will need to meet the adult criteria for the carers to continue receiving payments.

While welcome, I would like to take this opportunity on the day after the budget to reflect on the incredible contribution made by Australia's 2.65 million unpaid carers. These are people who each and every day care for a loved one, a partner, a child, a friend. They do it because they care and they do it with an enormous toll on themselves. Research conducted for Carers Australia in 2020 found these unpaid carers provided nearly 2.2 billion hours of care. The cost of replacing that care was estimated in 2020 to be around $78 billion and that will have only grown through COVID, while so many carers have been isolated, alone, with the withdrawal of formal support services through the pandemic.

Around 862,000 carers are the primary carer of the person they care for. Seven out of 10 primary carers are women. One in three provide care for 40 hours a week or more, and over 25 per cent—a quarter—provide care for more than 60 hours per week. That is all day, every day. As we enter the third year of a pandemic, carers are burnt out, they are exhausted and they desperately need more support. These responsibilities also have an impact on the carer—their own health and wellbeing. Carers Australia has asked for them to be considered as a vulnerable group in their own right. Their responsibilities limit carers' opportunities to participate in education and training, community activities or paid employment. It is estimated that, collectively, carers forgo income of some $15.2 billion a year. That is, across Australia, the collective contribution of what carers are forgoing—$15.2 billion a year—in order to care for their loved one. Whether it was like me helping to care for my dad or people helping to care for their partner or children, being a carer is a tough job. As my mum says, 'They do it because they love them.' She said she did not sign up to be a carer; it was not a club she wanted to join.

The COVID-19 pandemic has had and will continue to have a profound and enduring impact on carers. The national carers survey undertaken in the first years of the pandemic reported the impact of COVID-19 on carers. These are just some of the impacts: nearly half of the carers who responded were experiencing high or very high psychological distress and one in three felt highly socially isolated. They felt alone and vulnerable while they were trying to support the most vulnerable person in their life. One in three respondents to the survey said they never get time out from their caring responsibilities—never—with only half having enough time to keep on top of the other responsibilities of trying to hold down a job, of trying to keep a roof over their head and, with the cost-of-living pressures rising, of trying to keep food on the table. One in four carers reported spending more money than they made in the last 12 months. Every 12 months, they're going backwards, and this impact is long term, across their life span.

The impact has been particularly felt by parent carers of children with a disability and partner/family carers of older Australians waiting for home care, waiting for care at home or waiting for residential aged care. And, as the chance for respite dwindled and visitors to the house or home were limited or just not allowed, carers were even more isolated, alone and vulnerable. And yet the government has done very little to support carers through this difficult time, which will continue, as we're in the third year of this pandemic.

The vaccine rollout, particularly the failure to prioritise vaccination of people with disabilities, their carers and age and disability support workers, left carers isolated, anxious for their loved ones and concerned for their own health and wellbeing. Cuts to services resulting from workforce shortages and the additional costs to carers in PPE and RATs have made their lives even harder.

I heard from a grandparent whose granddaughter is in palliative care. They did not know at the time how much longer she had to live, and they couldn't get a RAT. His granddaughter's parents were just desperate, and they were phoning around, scrambling to get a RAT so that they could comply—which of course they wanted to do—with the requirements of the palliative care centre where she was being looked after. Just stop and pause for a moment and think about your loved one being in palliative care and you not being able to get a RAT so that you can comply with a requirement to keep them safe and others safe, including those caring for them. It's wrong. So many people have found themselves in that situation, or one not unlike it, through this pandemic.

Then, on the eve of an election, we get from this government, after almost a decade in power, a one-off $250 payment that is meant to take the pressure off carers. What will that do? Most carers I speak to can't afford to own a home; they're renting. Vacancy rates in my community are less than one per cent. You could be trying to rent a home with bedrooms so that you've got a place for the carer and a place for yourself, but it would cost you $600 or $700 a week. What's $250 going to do for someone who's looking at caring for someone for the rest of their life? It won't relieve the pressure. It will just leave them feeling more desperate and alone—and overlooked. That's what most carers tell me. They say they're forgotten, they're invisible, they don't exist. People remark that they know that what they do is valuable, that it's a contribution, but where's the meaningful action? Where's the proper financial support for carers? Where's the recognition that, in caring for their loved one, they're doing something on behalf of all of us? Where is the proper support for them to get back into paid work, to be able to fully participate, to have super when they retire? Being a carer is stressful, it's demanding, and people do it because they love the person. It is particularly demanding for carers of children with a disability, and this government has done nothing to ease that this stress or pressure, and, at times, it has made it worse.

I spoke to a mum recently, in Blue Haven, with twin daughters who are seven, and she has just been notified that their NDIS package was being cut. Her daughters live with ADHD and autism, and she's been struggling, having them learning from home for much of the last two years and going into a third year. She's just desperate. She's a capable person who has been left in this situation. What does she do? Does she seek a disability advocate, wait months and try to battle this in the tribunal, against the government's expensive lawyers? Or will they fall out of the system altogether, which is what has happened to so many of the most vulnerable people and families in our community? How can someone deal with Centrelink, NDIS or My Aged Care and all of this at the same time? One NDIS participant told me that being an NDIS participant was a full-time job, it's so demanding of them.

Australia's 2.65 million unpaid carers are tired, worn out, exhausted. They are being forgotten by this government. They are overlooked. They're invisible. They tell me that they don't count, that sometimes they're an afterthought. The government scrambles, 'Oh, what have we done for carers? Maybe we should give them $250.' They missed out on that support during the pandemic. It's just wrong. In a wealthy country like Australia, where the government's spruiking that we're having the best economic recovery from the pandemic and leading the world—we're a trillion dollars in debt—and yet carers can't get the proper support they need. Do you know what they need? They need heart. They need a government that cares. They need someone with empathy to walk side by side with them, not a government that puts hurdles and barriers and obstacles every step of the way that they have to fight and struggle to get the basic things that any of us want—a roof over our heads, the opportunity to have a good job, to contribute, to be able to care for the ones that we love.

I'm here today because of my dad and my mum and their experience. Their experience reflects the experience of millions of people and families around the country. All it takes is an accident, an injury, for someone to end up needing care overnight, like my sister's friend Steve, who, in his early 30s, ended up with a spinal cord injury. He has struggled to get the basic support that he needs to live with dignity, to lead a meaningful and contributing life.

Australia's carers deserve better. They shouldn't be overlooked, forgotten, invisible. They do matter. Every single one of them counts. I say to them: if we are fortunate to form a government after the election, Australian carers will be better off. They must be.