Speech by The Hon Jenny Macklin MP

2009 National Conference on Caring

Location: Gold Coast, Queensland

*** Check Against Delivery ***

I would like to acknowledge the Kombumerri people, the traditional owners of the land on which we are gathered today. And my appreciation to Carers Queensland for organising the 2009 National Conference on Caring. Of course Carers Queensland are accustomed to taking the lead. With innovative programs including the Carer Connect ‘buddy’ system, the Family Support and Advocacy Program and the Momentum program – an innovative support service for carers wanting to get back into the workforce.

Your conference – Building the Future with Family Carers – will encourage forthright discussion of the many issues and challenges facing carers, those they care for, the professionals in the field and government agencies. It’s an important forum to share ideas and experiences and to look ahead.

And above all, it’s an opportunity to plan a future based on strong, supportive partnerships with the people who care. The mums and dads, sons and daughters; brothers and sisters and partners who every day get on with the job of looking after those they love.

Today I want to talk about the Australian Government’s reform agenda for carers. We understand that carer and disability policy and service delivery do not and can not operate in isolation. The availability and quality of support services for a person with a disability has a direct impact on the life of their carer.

Support services must be effective, flexible and targeted to meet the needs of the person with a disability so that their carer can fulfil the other demands and responsibilities outside their caring role including work and family.

Prompt, targeted services which take into account the very different needs of carers’ and the people they care for. Because we know both anecdotally and from the available evidence-base that many, many of Australia’s 470,000 primary carers are under significant pressure. Emotionally, financially, physically.

Let me quote from the submissions to the House of Representatives Committee inquiry which is looking at how we can better support carers.

One says: “I love my daughter to the bottom of my heart. I wish she was never born this way, but I have to be strong and give my life to her, because if I can’t nobody else will.

And another: “Life is a routine, I have no time for myself, not enough sleep. I am failing subjects at school – I am drifting through life.

Not surprising then, that a report from my Department and the Australian Institute of Families studies found that primary carers experience far higher levels of isolation and physical and emotional disadvantage.

This survey of more than a thousand carers backed up what we already intuitively knew – that carers are more likely to have higher levels of mental illness; more likely to be in poor physical health and more likely to be separated or divorced.

And there’s a disturbing flow-on impact of these adverse effects on families. From this research we know that:

  • Carers suffer increased levels of relationship breakdown;
  • Carers worry about the impact on other family members, especially the siblings of a child with disability;
  • That not just carers have significantly higher rates of mental health problems – their partners and children also experience high levels of depression;
  • And that even when carers have supportive people around them, there is often disagreement and conflict.

And while all carers are at risk, we also know that the burden of caring falls unequally on women. Seventy-one per cent of primary carers are women, caring mostly for children and young people with intellectual and developmental disorders and for elderly relatives. And more than half the women who took part in this survey suffered depression, were in poor physical health and reported that their caring responsibilities – often more than 100 hours a week – left no time for paid employment or any meaningful social life.

All the evidence leads us to the conclusion that carers and their families are in danger of becoming permanently socially isolated and marginalised.

As a Government we recognise that turning this around requires support at many levels. But one thing that is key to preventing social isolation is access to respite services tailored to meet the different needs of carers. For some it might be the availability of an outside respite service; for others having someone come their home to help or the opportunity to get a few hours off to go to the movies or to play sport or get together with friends. Whatever form it takes, it’s essential that carers can look forward to having a break from their constant caring duties.

Improving and extending respite is a top priority for the new National Disability Agreement. This agreement is delivering record levels of funding from the Australian Government into disability services, including much needed respite. Respite that’s essential to stop carers becoming isolated from their communities.

It’s also very important for carers who look after people with mental health problems.

Many carers of people with a mental illness fail to identify themselves as carers due to the stigma of the illness. But the research tells us that in any given year, one in five Australians will suffer a mental illness and many of these people will be cared for by their families.

The nature of caring for people with a mental illness is often misunderstood. Carers of people with a mental illness have diverse and changing needs ranging from education, counselling, peer support and respite. We also know that carers of people with mental illness are often excluded from many mainstream or generic community support services such as respite assistance and practical home help. And we recognise that without their carers, many people with mental illness who have highly complex needs would require expensive, alternative care.

So I am very pleased to be able to announce to you today that the Australian Government is providing an extra $13 million over two years to assist carers of people with a mental illness. Under this additional funding, 46 National Respite Development Fund organisations will receive additional funding.

This will help them provide support and respite for carers of people with a mental illness. In the last financial year, funding from the Government’s Mental Health Respite Program provided around 415,000 hours of respite to over 8,600 carers. The new funding I’ve announced today will provide a further 260,000 hours of respite services helping more than 5,000 carers a year.

Improving and expanding respite services is essential.

So too is the provision of financial support which is responsive and targets the people who need it most.

As you know, the Government’s review of pensions, including Carer Payment, has reported to Government. We will respond in the coming Budget. A down payment on pension reform was paid to carers last December but we know a lot more needs to be done.

The Government is reforming the eligibility requirements for Carer Payment (child) to make them fairer.

Over the years, those of you caring for children they have endured overly complex and restrictive eligibility requirements denying appropriate financial support to many carers of children with severe disability or medical conditions.

Next week I intend to introduce legislation into the Parliament to implement these long-overdue reforms in line with the recommendations of the Review which examined Carer Payment (child) eligibility and its effectiveness. The Review found the eligibility requirements to be so restrictive that across Australia only 3500 families were receiving the payment.

With the passage of legislation through the Parliament, which takes into account the level of care required rather than a narrow set of medical and behavioural criteria, an estimated 19,000 more carers will have access to Carer Payment Child from 1 July.

Like the parents caring for their toddler who has been diagnosed with severe and lifelong multiple disability. Although unable to sit or walk without support, unable to feed himself and suffering hearing loss this family was previously turned down for financial support. Subject to the usual income and assets test applied to these payments, parents providing intensive care to children like this toddler will be eligible.

And we are also streamlining the assessment procedure. So when a parent qualifies for Carer Payment (child) they will automatically qualify for Carer Allowance as well – instead of having to complete another set of forms and medical examinations. Their child will only have to be examined once.

And a range of treating health professionals including physiotherapists, registered nurses and Aboriginal health workers in remote areas, will be able to provide assessment, not just doctors and specialists. And in recognition of the obvious fact that children with disability still require care as they grow up, carers will be able to move more easily on to the adult payments once their child turns 16.

To give people with disability, their families and carers an ongoing voice in the development of the National Disability Strategy, a new National People with Disabilities and Carer Council has been established. Carers Australia President Pam Webster and Deputy Chair Kirsten Dean are just two members on the Council who are carers to express the views and perspectives of carers and help shape future policy. I appreciate very much the contribution you are making to make sure our policies will make a difference to the lives of carers and those they care for.

I know one of the things that has frustrated carers has been governments blaming one another for inadequate services. The new National Disability Agreement, which came into effect in January this year signals a new era of Commonwealth and State and Territory Government cooperation. There is a Commonwealth investment of $5.3 billion over the next five years, providing significant additional funds to help meet unmet need and drive important reform.

At the heart of the National Disability Agreement is an across the board commitment to improve and expand services for people with disability, their families and those who care for them.

Improving support for older carers is a national priority area for the new agreement. As Auntie Patricia said in her welcome to country, older carers especially want to know that when they pass on, the people they care for will be treated with respect and dignity.

The agreement means that by 2013, the Australian Government’s contribution will reach $1.25 billion, compared to $620 million in 2007. As well, the agreement includes the extra $1.9 billion announced in May 2008 to pay for more than 24,000 supported accommodation, respite and in home care places. And the new Agreement begins the reform process to re-cast a system which has failed to respond to change over the last decade.

The reforms we are making are long overdue. They are necessary to change policies and systems which, through neglect, have become overly complex, confusing and unresponsive. The fact that we are now dealing with this neglect makes us mindful of the need to plan ahead. To anticipate changing needs and be ready to adapt to meet them. At both the government and service delivery levels. Because planning ahead is critical if we are to meet future challenges associated with the ageing population.

As you all know, last year I asked for a parliamentary inquiry into Better Support for Carers. The chair of the committee, Annette Ellis, tells me there has been an overwhelming response to this inquiry. Thirteen hundred submissions have been received and 14 public hearings have been held. Over 85 per cent of submissions have been from individuals who have gone to extraordinary lengths to put detailed information before the committee.

It is a telling indication of the huge issues facing carers that people with so little time available to them, have gone to such effort to make sure the parliamentary committee is fully informed of their concerns.

A consistent theme in submissions to the inquiry has been the concerns of carers about the future. All of us here have an important role to play in helping shape that future. Recognising and appreciating the selfless contribution made by carers each day of their lives. And making sure we respond to their changing needs. There is a lot of work to be done. I look forward to the very positive contribution – which I’m certain will be made at this conference – to the ongoing national debate.