Fiona Nash (NSW, National Party) Share this | Link to this | Hansard source

I rise tonight to talk about a particular group of unsung heroes in our community: carers. Carers are people who give up their time to look after a child, parent, spouse, relative or friend with a disability. The disability may be temporary or permanent and may have been present from birth, acquired through an accident or as a result of ageing. Many people do not realise the extraordinary contribution that these carers make to our community. They make huge sacrifices to care for the people they love, often to the detriment of their own health and welfare. My Nationals colleague in the other place, Kay Hull, has raised this issue on many occasions, and I commend her commitment and dedication to having this important issue heard. For us to understand even a fraction of what these carers go through, I am going to highlight just some of the life differences that can be experienced. I will do this by comparing a family that has two healthy children with a family that has a child with a disability.

In family A the husband and wife have two children. They watch their children crawl, walk, talk and, over time, develop into mature adults. One of the children has gone on to study a trade, while the other has decided to go on to university. Over time, both children have married and have had children of their own. When the children were younger, the wife spent some time at home looking after them. She later rejoined the work force and was able to focus on her own career. Both husband and wife have reached retirement age and they are thinking about their future as retirees. They have sold the family home and bought something smaller, and they spend their time playing golf, occasionally looking after the grandchildren and doing a bit of travelling. They are enjoying life, doing the things they planned they would do once they retired.

In family B the husband and wife have one child. The child was born with a physical and intellectual disability. It is not possible for both parents to work, as their child needs help with the normal everyday things that come so naturally to other children as part of their development. The father continues to work and the mother makes the choice to stay at home and provide the care required. Life becomes financially more difficult; there are ongoing visits to the doctor, specialised equipment is needed and then there is the cost of medication. Eventually the strain of caring reaches the first breaking point and the husband and wife, through no fault of their own, decide to divorce.

Every day the mother cares for her child. As much as she would like to work, she has no choice but to stay at home. There is no break, no holiday and no reprieve from the constant care requirements. There are respite facilities that she is able to access, although this is only for a limited number of weeks each year. As both mother and child age, the mother begins to worry about how she will continue to provide her child with ongoing care requirements. There is no thought of retirement, planning for a future, playing a game of golf or taking a holiday. The future holds only the unknown: fear and concern about what will happen, particularly if she becomes too old or sick to continue to care for her child.

Based on the ABS 2003 disability, ageing and carers survey, there were 677,700 people aged under 65—that is 3.9 per cent of the total population aged under 65—with a disability that is classed as profound or severe, meaning that they are restricted in their ability to perform everyday tasks that we take for granted. These people need assistance to perform one or more tasks associated with self care, mobility and communication. In total, 3.9 million people—that is 20 per cent of the population—are affected in some way by impairment, limited in performing tasks associated with self care, mobility and communication, or have a disability which causes schooling or employment restrictions. The majority of people experiencing such disabilities live in the community. This means they have family or friends who are their carers. ABS figures show that 2.6 million Australians identify themselves as carers; 474,600 of these identify as primary carers. Many of these carers are unable to participate in the work force due to their carer responsibilities.

The Australian Institute of Health and Welfare estimates that the amount of unpaid assistance provided by these carers is the equivalent of almost one million full-time employed persons. The value of this work is estimated to be around $19.3 billion. Carers are so focused on their responsibilities that they often neglect their own health. They often suffer from depression, have low self-esteem, have anxiety problems and are chronically tired. They also often suffer from physical injuries obtained from the physical strains of their carer responsibilities. There are carers at breaking point—those who have felt that they have no choice but to surrender the person they love and have been caring for by not returning to pick them up from respite. These crisis situations lead to respite beds becoming blocked, meaning they are no longer available for respite purposes.

One of the consequences of the inability to meet the rising needs of carers is people with disabilities being placed into inadequate and entirely unsuitable accommodation. Take for example the estimated 6,000 people across Australia aged less than 65 who are housed in residential aged care facilities. We need to keep in mind that people vary greatly in the extent of their disabilities and so do their needs and level of care. This is why it is important for disability services to be flexible in the types of accommodation and support that are offered. What is required for the situation of young people in nursing homes are strong measures to prevent premature admission, particularly while there is a deficiency in accommodation places. It would be a tragedy to move these people out of the nursing homes only to have them placed in accommodation which is equally inappropriate. Younger people currently residing in aged care facilities should be provided with the option of moving into the community with adequate and appropriate support.

The increase in life expectancy means disabled people are, and will in increasing numbers become, part of our ageing population. Although these people are part of our ageing population, the difference is they have additional needs associated with their disability. Their disability should not be ignored simply because these people now fit into a category of ageing; nor should the fact that they are ageing be ignored because they have a disability.

At this stage I would like to point out that carers are not always adults. There are young carers out there who are still children themselves but have the huge responsibility of caring for a mother, father or sibling with a disability. We need to acknowledge that there are unmet needs of carers and people with disabilities, and we need to do something about it. There is a crisis. Urgent help is needed to bring peace of mind to carers and to bring about a better quality of life for both carers and the loved ones they care for. We need to be wary of quick bandaid solutions that may be implemented to address this crisis. They do not replace the need to take a long, hard look into how best to plan for the future.

The issues which should be addressed immediately include finding appropriate accommodation for those disabled persons under 65 who currently reside in nursing homes, and clearing the currently blocked respite beds by placing those using these beds in appropriate long-term accommodation. The funding required to meet these issues must be found, and found now. The issues which will also need to be addressed in the immediate future include determining suitable and sustainable long-term supported accommodation options, improving and expanding respite care options which can sustain future requirements, and ensuring that future funding is available for more adequate data collection processes to be put in place in order to better identify needs.

The groundwork is being done by various disability organisations in gathering information about ways in which we can best help carers and the people they care for. Their recommendations should be given consideration. There are many real stories out there, like the one I told earlier tonight, that highlight the hardships faced by carers. Many more remain untold. It is for the sake of those carers that we need to work effectively together with the states in making sure that we deliver appropriate, efficient and effective services.