Julie Collins (Franklin, Australian Labor Party) Share this | Hansard source

As a member of the House of Representatives Standing Committee on Family, Community, Housing and Youth, I am very pleased to be able to speak today on this report on better support for carers, Who cares …?. This report has taken almost 12 months. The committee received a large number of submissions, over 1,300, but the most interesting thing about that is that around 1,200 were actually from individual carers, from people who had taken the time to tell us their personal stories. We also heard directly, as we went around the country, from around 250 witnesses, including in my home state of Tasmania. Indeed, a personal friend of mine was one of the witnesses giving evidence about the role she plays in caring for her son with a disability.

This report highlights the role carers play in detail. Just as importantly, it highlights the juggling they do and stress they are under as they go about their daily lives. Our carers, the people we spoke to in preparing this report, are our spouses, parents, grandparents, children, siblings and sometimes our friends or neighbours. Their stories were a sobering reminder of the difficult lives carers live, some of them being thrust into their caring role without notice, and some even without wanting it. Their stories were quite distressing, for them and for everyone in the room who heard them. But we needed to hear them to fully understand.

It is estimated by the ABS that around 2.5 million or 13 per cent of Australians identify themselves as carers, and one in five of these is a primary carer. That is around half a million Australians who provide the main daily care for someone, day in day out—someone doing such tasks as dressing or feeding the person that they care for. As I have said, around 91 per cent of them are actually related to the person they care for. As we all live longer lives and the population ages and the population grows, the number of carers required in Australia is only going to increase. As the report notes, research from the National Centre for Social and Economic Modelling, or NATSEM, estimates there will be a 160 per cent increase in the number of people over 65 needing care. From this it is clear we need to act, and we need to properly understand the current situation.

The really big issue in the report that we heard as we listened to evidence and that we read in the submissions was the lack of respite care and certainly the ability in many cases for people only to be able to access respite care if they are in a dire emergency—if they have been coping and coping and coping until it gets to the point where they cannot cope any longer. For many of them this was the only time they actually got access to respite care. This, for me, was very telling. When I say respite care, I am talking about outside home care, but we also heard about the lack of in-home care available. Obviously when you are caring for someone on a day-to-day basis, sometimes it is too exhausting to get the person you are caring for out of the home, or it is just not possible to move them outside of the home, so this in-home respite care is also as critical as outside respite care.

As the previous speaker mentioned, another big issue for carers is the lack of recognition for their role and the contribution that carers make in our society. I think most people, if we asked them about carers, would generally say that, yes, they know they play a vital role, but I do not think many people fully appreciate just how difficult it can be to be a carer. The physical and emotional and social impacts of caring on the wellbeing of not just the carer but also their families, their siblings and their relatives are significant. They can become unwell or get depressed, or they can feel social isolation due to their inability to socialise with their friends and do what we would consider ordinary daily activities such as exercising or going outside for a walk in the park.

Also apparent was the lack of assistance for carers to develop the range of skills they need to actually provide the care they are currently providing. For many carers there is no training or support on how to do some of the caring things that they are required to do for the person for whom they are caring. The financial stress was another important issue raised. Many carers and their families have financial stresses as a direct result of their caring role. We heard that this does vary greatly, depending on the level and type of disability of the person being cared for. We have heard from previous speakers about the maze of services that carers access, and the problems with accessing necessary and relevant information on the support and services available to carers. This extends in many cases to even knowing what sort of support is actually available for them to access.

The other thing that we noted was that there was a great dissatisfaction with existing community care and how it is provided. It appears that the systems do vary greatly from state to state and even from region to region. There also appears to be a large amount of unmet need in relation to community care and the cost of accessing some of the services is prohibitive for carers.

One of the other issues is the lack of choice for carers in relation to participation in the workforce and/or education, and we heard that there are shortages of respite or alternative care and daily programs for the care receiver and often inflexible workplace practices which mean that people are unable to leave work to perform their caring role. There is also much frustration around the amount of paperwork and assessments that carers endure.

This will give you a bit more of a picture: consider a carer at home caring for somebody 24 hours a day. While they are doing that they are expected to access all their services, know what services are there, know how to access them, try to go to work, try to have a normal relationship with other people, access the paperwork and assessments required by Centrelink and other such services and deal with the financial stress of caring for the person they are caring for. It is no wonder these people are really having a tough time out there. That is why the mental health and the health and wellbeing of carers are something that we need to address.

The report looks at around 50 recommendations, and I believe that these recommendations, if implemented, would address some of the issues we have raised. Some of the things include improving research and data, because there does not appear to be enough research and data to provide accurate information on what is really happening out there, and certainly the identification of people as carers is not as high as it probably should and could be. The other thing we looked at was the need for a national carer recognition framework which would look at a national strategy to assist carers and also some legislation to protect carers’ rights.

There were some recommendations in relation to additional financial support, including some acknowledgement of the level of financial costs associated with the specific caring role carers undertake as well as the specific needs of the person they are caring for. There are some recommendations in relation to changes in the assessment processes with Centrelink. As we heard, Centrelink do the best they can in terms of the guidelines they are working with but there is no doubt that, if you have got a profoundly disabled child whose condition is not going to improve, filling in the same form three, four or five times is not serving anybody. Providing support for carers to remain in the workforce and/or education or to re-enter the workforce or education after their caring role was also part of the recommendations.

The other thing I want to touch on before I finish is what the government has actually done so far in supporting carers. We have, during the time this inquiry was being undertaken, already provided some support for carers. Last year there was a one-off payment of $1,000 provided to those receiving carer payment and those on carer allowance were provided with $600 assistance for each person they cared for. In this year’s budget the Rudd government has introduced a $600 payment and carer supplement for all carer payment recipients, and this is a payment that we have now legislated for each and every year. It is in recognition of the additional costs of caring. I think that is a great step forward.

We have also provided for those on carer allowance an extra $600 a year for each person they are caring for—again legislated for in each and every year. We have also had some recent legislation, which I spoke on in this place: the Social Security Legislation Amendment (Improved Support for Carers) Bill, which makes improvements for those seeking assistance with caring for a child with a profound disability. That addresses some of the things I was talking about before regarding paperwork.

What we really need to look at now is where we go from here. There are many recommendations in the report that I have been unable to touch on today. I urge all those interested in providing better support for carers to read the report and the recommendations. I am sure that the Rudd government will respond to the report, as I know that Minister Macklin, who referred to the inquiry to the committee, is very supportive.

In conclusion, I want to put on record that I think carers are really important in our society. This report certainly opened my eyes to just how difficult their situation is. They do need greater choice, support and flexibility. They need respite, inside or outside their home. They need a helping hand from government and from society so that they can engage with all levels of our community. I want to thank the committee secretariat and the chair of the committee for their support and for the valuable assistance they have provided over the last 12 months. The hope of the committee is that this is the beginning of a better understanding of the caring role and its importance to all in our society. I have been proud to be involved in this report and its recommendations and the work we have achieved over the 12 months.

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