Margaret May (McPherson, Liberal Party) Share this | Hansard source

There is nothing more disturbing for me as a member of parliament than to spend time with an elderly mother who has the task of caring for a disabled adult son or daughter without adequate resources or support from government or the community. Each time I meet with one of these mums or dads, the most common question asked of me is: where can my child receive the care they require when I am gone? That is a question I cannot answer, because to date there is no answer.

These cries for help are not being heard. Some of the cases I am aware of in my own electorate and within the Gold Coast city are heart-rending and desperate situations—parents who are suffering social isolation and economic hardship, parents whose own health and wellbeing are being compromised because they do not have the respite or support they need to carry out an often 24-hours-a-day, seven-days-a-week job caring for a loved one who has a severe disability such as an acquired brain injury. Time and time again families tell me that they will have to place their young son or daughter into the care of a nursing home, a totally unsuitable outcome and a decision that is devastating for the family. But, unfortunately, it is often the only decision they can make. There is no other alternative.

Nursing homes play an important role within our communities, but these facilities are designed and built for the elderly, the staff are trained to care for the elderly, the programs delivered in them are for the elderly, the services are geared for the elderly and the overall environment is geared for the needs and wants of the elderly. The needs and wants of the elderly are very different from those of younger members of the population, especially those with a disability. Many young people with a disability have a normal life expectancy, which means that under current arrangements they could live in an aged care facility for 50 years or so. This state of affairs cannot be allowed to continue. Placing young disabled Australians in facilities that were never intended to support them, without the support services they need to maintain their health and independence, is unconscionable in anyone’s language. We are an incredibly fortunate society, but if we continue to lock away young people with disabilities in nursing homes I believe that as a society we will become poorer and weaker. Younger people’s needs and wants are different from those of older people. There is clear evidence that a young disabled person locked away without the support services they need will experience a deterioration in their health and independence that will result in increased hospitalisations and added health costs.

We have an army of devoted ageing parents living in our communities without adequate support services and caring for disabled adult children. These parents are tired. The burden on these carers is high, and the stress on their marriages and the other siblings is high. As a disabled child gets beyond adolescence, they grow heavy to lift; just the physical effort of caring places enormous strain on carers. Some parents have said to me that they would just love a weekend away to have uninterrupted sleep or to have the chance to have a meal out or just an evening socialising with friends. It is not just that the disabled child lives in isolation; it is my experience with some of these families that they also live in isolation. They live in social isolation because their child cannot be left alone and, in many cases, cannot be taken out because of unacceptable social behaviour.

The National Alliance of Young People in Nursing Homes believe that the solutions are simple and straightforward. In their submission to the aged care inquiry in 2005, YPINH said that we do not need more scoping studies to establish the nature and extent of the problem. They maintain that we know the problem exists, what it encompasses and that it will get worse. There are community based supported accommodation options that are successful in bringing young disabled people out of aged care and back to living in the community. YPINH maintain that we simply need more of these options to enable young people and their families to have a choice about where they live and how they are supported.

However, extending the range of options relies on two key factors. The first is the political will to solve the problem. The second is the establishment of a dedicated funding stream that young people and their families can draw down to develop the accommodation and support services they need. It is time both levels of government stopped playing politics, accepted joint responsibility for the problem, got on with finding a coordinated and integrated solution and moved young people from aged care facilities to community based living arrangements.

That first step happened at last Friday’s COAG meeting, when state and territory governments agreed with the Prime Minister’s proposal to jointly fund and develop a $244 million program. This was a great outcome from the meeting which will hopefully reduce the number of young people with a disability living in an aged care facility. I commend the member for Melbourne and all members in this House for bringing this motion to the attention of the House and for speaking today.

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