Speech by The Hon Jenny Macklin MP

Young People in Nursing Homes Conference

Location: Melbourne


First of all I would like to acknowledge the traditional owners of this land, the Wurundgeri people, and thank them for welcoming us onto their land today. And second, I would like to thank the Young People in Nursing Home National Alliance, and Bronwyn as the National Director, for bringing us all together for this conference. Since you began six years ago, you have done a great job in working with young people living in aged care facilities, their families, friends and carers. … so thank you.

I would like to start with telling you a story, one that no doubt you’re all familiar with. But it illustrates perfectly why we’re all here today. Barbara is a 43-year-old single mother with a young son – and Huntington Disease. As I’m sure many of you here know, Huntington Disease is an inherited, neurological disorder causing gradual deterioration of physical, cognitive and emotional abilities. It mostly affects younger adults, usually appearing between the ages of 30 and 50. Currently there is no cure.

For two years Barbara struggled at home with little support, but eventually her difficulties with short-term memory, decision making, not to mention mobility and balance, forced her to accept a place in residential aged care. She was the only younger person living there, and over the course of the next year her family and friendship networks evaporated. Her son visited once a week, but in that environment, with little specialised support, parenting him was increasingly difficult. The Young People in Residential Aged Care program has given her an opportunity to move into shared supported accommodation in her local community. So now she’s with people her own age, she has access to physiotherapy, occupational and speech therapy, and her son is more comfortable visiting her. It must have been such a relief to Barbara and to her young son – both of whom had already suffered far too much – to find themselves in an environment that was much more suitable.

As I’m sure everyone here knows, currently more than 6000 people under the age of 65 are in residential aged care. These might be people, like Barbara, with a degenerative disease. Or they might be children who have brain injuries as a result of asthma or meningitis. There are the hundreds of young people who have experienced catastrophic accidents – assaults, car accidents, diving accidents. And there are people who have permanent brain injury following substance abuse.

Whatever the reason, a nursing home for the elderly is no place for them. Generally the staff aren’t trained to meet their needs. They are isolated by their age and, like Barbara, might be the only younger person in the home. Usually the support available for the elderly residents is not appropriate for their particular needs. And this is where the Young People in Residential Aged Care Program can step in. This program has now been going since all Australian, state and territory governments agreed at a COAG meeting in 2006 to fund the five-year $244 million program.

It has three objectives: first, to move younger people with disability from aged care nursing homes into more appropriate accommodation. Second, to work to prevent future admissions of young people into aged care. And third, to improve the support services for those young people for whom a nursing home remains the only available option. We’re just a couple of weeks off getting the latest data from the Australian Institute of Health and Welfare on progress. I’ll be meeting with my state and territory colleagues to look at the progress of this program and make sure it is delivering the outcomes.

I gather, so far, 83 supported accommodation places have been created, 72 home-based support packages – and an extra 52 in NSW – and 570 improved services for those young people already in residential aged care. Funding has also been committed for an extra 169 supported accommodation places in 2008-09. We need to keep the pressure on to get these extra places built. In Victoria, 138 younger people and their families have benefited from this long overdue focus on supporting younger people with disability. But the Australian Government recognises that more can be done and that’s why I, along with my Parliamentary Secretary, Bill Shorten, who you heard this morning, will be working closely with our states and territory colleagues to get the support on the ground as soon as possible. Together we have written to the States and Territories to convene a special meeting to discuss how to get more support on the ground more rapidly. There is national agreement that young people don’t belong in nursing homes. In partnership we will deliver on this agreement. The sooner the better.

Of course, before going into a nursing home many people will have been cared for at home. Carers are unsung local heroes. At great personal cost and almost always under very difficult financial circumstances, carers fulfil an incredibly important role in our community. We know only 12 per cent of Disability Support Pensioners and 11 per cent of Carer Payment recipients are working to supplement their payments. We also know how hard it is for them to get a break.

So, it is with a great deal of pleasure that I can announce today funding of $2.1 million to help carers of young people with severe disabilities access emergency, unplanned respite. Carers usually have a terrible time trying to find short-term unplanned respite – this funding will help alleviate the stress. It will be provided through the Respite Support for Carers of Young People with a Severe or Profound Disability Program, which is delivered through the Commonwealth Respite and Carelink Centres. It will help a further 2,000 carers of young people with a severe or profound disability during 2008-09. Carers are under enormous pressure. Many of them undertake around-the-clock care for relatives and friends and make extraordinary personal and professional sacrifices. The expanded emergency places will cater both for the needs of individual carers and those in their care. This could include staying overnight in a respite cottage, some in-home care, or a few hours enjoying recreational activities. These extra respite places will help families and carers cope with the stress of their often relentless caring duties. Respite is vital to help carers cope so that options like nursing homes are a last resort. This commitment builds on an additional $100 million in capital funding to provide over 300 places in new supported accommodation units for people with disability whose ageing parents can no longer care for them at home.

These additional services are going to help but the disability sector needs systemic reform. The delivery of disability services by Commonwealth, state and territory governments is inconsistent, with no enforceable quality standards and no national assessment process. They also do not meet existing demand. In the past, it has been the forgotten sector – and has repeatedly been put in the too hard basket. It remains a cobbled together set of service types delivered in an ad hoc way to respond to crisis. In such a system, many people have slipped through the cracks – and this is nowhere more apparent than for the 6000 younger people in aged care nursing homes. Other service systems – such as aged care and child care – have undergone substantial reform over the past 20 years. But the disability service system was kept waiting. We have begun the process because we believe it is not only essential to provide better access to better services for people with disability, their families and carers – it is also critical for their economic and social participation.

Without the right kind of support, people with disability will continue to suffer from social exclusion and disconnection from the community. Reform to the disability system will put the person with disability and their families and carers at the centre of the process. So people like Barbara and her young son will not have to deal with the isolation they experienced in unsuitable accommodation.

I want to see service provision benchmarked against the disability population, with service providers subject to a national set of quality standards. This would mean a person living in Perth would be assessed and provided with services in the same way as a person in Brisbane, or anywhere else. At the moment, there is no consistent approach to assessment for disability services. Different jurisdictions use a multitude of different tools and processes. Often, rather than improving access to services for people with disability, these assessment tools are used to ration access.

With proper benchmarking and consistent measurement of need across jurisdictions, all governments will be able to better plan and target funding and services. This will then mean more people are reached – it’s better for organisations delivering the services – and it’s certainly better for those on the receiving end. Governments can then be held accountable. As part of the benchmarking exercise in the reform process, the disability service types – that is the supported accommodation, the respite care – will be redefined so that they better match what is needed. For example, benchmarks for respite could mean that a person with disability and their family have access to, say, four weeks respite per year. A set number of supported accommodation places would be available for a determined number of people.

These standards will underpin the whole reform process, including putting in place Quality Assurance systems to ensure we deliver the best possible services. All this is essential reform. But we are not waiting until we have this done to address some of the unmet need. At a Disability Ministers’ meeting in May this year, the Australian Government in partnership with the State and Territories agreed to deliver a $1.9 billion funding boost to disability support services across Australia.

In total the $1.9 billion in funding will deliver more than 24,500 additional disability places including:

  • around 2,300 in-home support services
  • 2,300 supported accommodation places
  • 9,900 individual support packages and
  • 10,000 much needed respite places in a range of forms across Australia

These funds will certainly provide a good start for reform but there is much still to be done. To clearly set out the goals and tasks that we want to achieve, we are developing a National Disability Strategy. It will set out a national and across-government approach to disability focusing on achieving real improvements in social inclusion and economic participation for people with disabilities, their families and carers. Its key focus will be on accommodation, flexibility of support and improved education, training and employment. It will also set the direction of future disability policy in Australia. Of course it is important for us that we make sure everyone has an opportunity to provide input into the strategy.

I also understand how important it is to make sure that carers’ experiences and contributions are included in framing the strategy. We are currently finalising a consultation timeframe and I will let you know soon how you can contribute to the process.

Reforming the sector is one side of the coin. Reforming support payments is the other. As you know, I have recently asked the Secretary of my Department, Dr Jeff Harmer, to complete an investigation into measures to strengthen the financial security of seniors, carers and people with disability, including a review of the Age Pension, Carer Payment and Disability Support Pension. This review is part of the Government’s wider inquiry into Australia’s Future Tax System, chaired by the Secretary of the Treasury, Dr Ken Henry. Two weeks ago, a discussion paper was released to stimulate debate and raise the critical issues.

The Government knows that many pensioners and carers are finding it tough to make ends meet. We want to make sure our pension system suits our current circumstances now and into the future. The review is now underway. There will be consultations in all capital cities as well as Rockhampton, Wangaratta and Newcastle, with pensioners and pensioner groups. We want as many people as possible to get involved and give us their ideas on how they think the system can best be improved.

Through this Review, the Government will be able to investigate measures to strengthen financial security for older Australians, carers and people with disability in the long term. Information from responses to the Background Paper, written submissions and national consultations will feed into the final Review report, which will come out by February next year. The Government will respond quickly. We know that people on pensions need early action.

We hope with these measures – the reform of the sector, the National Disability Strategy and reviewing pensions – will do what you are setting out to discuss today: shape the future. I want to be part of a Government that makes change happen on behalf of the vulnerable and disadvantaged – the people who need our support to take on their own future with hope and optimism.