I thank the joint committee for inviting us and giving us the opportunity to speak about our national carers' strategy, a proposal we are putting forward to the Government. I am very much aware that all the committee members know the issues pertaining to family carers. It must be complimented on its report, which was published the year before last, and on its position. Any Government would do very well to take that report and implement it. If that were done, I am 100% certain we would not be sitting here today. However, such is life.
The strategy document is called, Towards a Family Carers' Strategy. This means we have set out our position regarding the contents of such a strategy. We propose to the Government that it should be seriously considered and implemented as part of the next national agreement, which is due to be concluded around the end of October. The reason is that, according to the 2002 census of population, there are 150,000 family carers, 50,000 of whom work full-time around the clock. They are not in a position to take up work of a paid nature outside the home because of caring commitments within it. They are not able to leave the home unless there is someone else there to continue their role while they are gone. There are 50,000 such people, and they are our priority concern. CSO figures show that 3 million hours per week are worked by the 150,000 family carers. That is worth repeating. It is 3 million hours of input by family carers into what is, as far as we are concerned, a primary care element of the health services. Unfortunately, we still have some way to go to get that recognised by the various Departments concerned, particularly the Department of Health and Children.
I will take members through our proposal regarding a family carers' strategy. We have examined the strategy under six key headings which cover such matters as comprehensive support for family carers and enhancing their support and well-being, since carers' health is extremely important. We have looked at an adequate and fair system of remuneration for carers and at education and training. That issue is extremely important, and we would like to see it addressed in the next national agreement. Work-life balance policies for carers relate to the 100,000 family carers providing care in the home and working outside it at the same time. We will go into this in more detail under that heading, but it is also worth noting that many of those so-called part-time family carers listed in the census are probably working a 40-hour week at home and the same in paid employment. The last point is a system that provides up-to-date and accurate information for carers.
Any research done has identified comprehensive services and supports as the No. 1 priority for approximately half of family carers. The main thing is that a comprehensive needs assessment must be introduced for family carers that covers the person being cared for but that has a crucial focus on the carer too. The carer has needs that are, by and large, ignored by the State. I speak of such things as respite. It is very important that the family carer gets regular breaks. It is not fair that the burden of care should be placed on one family member, and most Deputies and Senators will be aware from their constituency work that when a care issue falls upon a family, particularly the care of an older person, there may be no faster way to scatter its members. Not many people will buy into it, and in many cases one person provides the care, so that respite, particularly regular and short breaks, is key. Regular long-term respite breaks in places such as day care centres and nursing homes are also extremely important. That is what the needs assessment must consider, but there are also the social aspects of carers' lives. In many cases, the carer is in the home around the clock.
On average, an older person needs care for between three and five years. Caring for a child with a disability is a long-term commitment. What tends to happen is that the social life of those who provide care is left to one side, allowing depression to creep in after a number of years. People may become very angry at being left in the situation. That issue should be acknowledged and addressed as a fundamental part of service delivery. If a person is happy in his or her role as a carer and is reasonably well looked after, his or her health does not tend to suffer as much as it will suffer if he or she is the only person carrying out this role.
There is evidence particularly in reports from the United States of the collapse of the carer's health when the role of caring finishes. Among the reasons for this is that the person's immune system tends to keep illnesses at bay when under pressure but once the pressure is released the immune system relaxes and is open to invasion by illness. Counselling is very important. A person takes on the role of carer in response to a pressure point, becoming a carer overnight, for example for an older person coming out of hospital, a child born with a disability or being disabled as a result of an accident. A typical case is where a mother, living alone, suffered a stroke and is now due to be released from hospital. The hospital will ask who will provide the care and the family must now decide who will take on this role as the mother will no longer be able to live alone. This can give rise to tensions among family members. We need a service that will look at the mental health of the carer after he or she becomes a carer and when his or her caring role finishes. Counselling is very significant in dealing with the emotions at those points.
We would like to see carer support groups being supported from central funds for their major role in the mental health of the family carer and providing opportunities for carers to trade information and talk about service delivery in the different Health Service Executive areas. One finds very often that two carers may have different individuals dealing with a case in the same HSE area and one person could end up very happy with the level of service while the other person may not find the person dealing with his or her case as sympathetic or helpful. The carers' support group allows people to air those types of issues. Feedback from staff in the Health Service Executive area is often to the effect that their names spread all over the place.
One of the major issues relating to the carer's health and well-being is that training is provided on creating an awareness of the role of carer; the types of support that should be available for carers and the provision of appropriate equipment from the local Health Service Executive. There are major inconsistencies in the different Health Service Executive areas. If one is caring for an older person, the service in certain geographical areas is more supportive. The same applies when one is looking after a child with a disability One example is where a carer needs a hoist — in certain areas one will have it the following day and in other places nobody knows when it will be made available. This is a very important issue for carers because the life of a carer is very much easier if he or she has the appropriate equipment at home. This service should be available to everybody.
What we are trying to achieve is a road map on the national strategy to caring where Government states openly where it sees family care as part of the overall health services in three to five years from now. A nurse working in the health services would get one free health check per year. We believe that family carers should have a medical card, entitling them to one comprehensive health check free of charge per year. The State must appreciate and value the role of the carer in the provision of health services. That is a fundamental cornerstone of the services to which family carers should be entitled.
Action must be taken to publicise and raise awareness in the community and among those providing State services for family carers. This is one of the few issues that affects everybody. Reports show that almost everybody without exception will either be cared for or will provide care at some point in his or her life. The State must convey this message to the general public in order that it will feed into a better support network for family carers. From our experience in the 17 resource centres around the country, one often sees issues coming up between family members which are not conducive to sharing the burden of care.
Another issue is an adequate and fair system of remuneration for carers. Given the diversity of the circumstances of those providing care, for example, those in receipt of State payments such as widows on State pensions or lone parents in receipt of the lone parent allowance, the existing payments should be topped up by the carer's allowance in full or in part. For those combining a caring role with part-time work, tax credits could be the vehicle to provide additional income. However, for those providing full-time family care our position is that the carer should be treated in the same way as any worker doing a similar job in the health service. Everybody is familiar with the role of the home help, for which the starting scale is €10.41 per hour. Full-time family carers who are doing this job 24-7 in their own homes and are not in a position to take up outside employment should be in receipt of a payment similar to what a person employed by the health board would get for a similar job. They should also enjoy the rights and entitlements that workers have such as sick pay, leave with pay and so on. It is a complex and complicated issue when one considers the nuts and bolts of the various models of providing that kind of service. We have also considered models provided in other countries. The northern Scandinavian countries have good ideas whereby the family carer can elect to work for the local health board, working as a home help but doing that job within his or her own home. This system seems to work well.
With regard to education and training for family carers, the key point is that each family carer should be trained in the skills of care provision. The Carer's Association of Ireland provides a home training course accredited by the City and Guilds of London Institute. We train approximately 500 family carers each year, totalling approximately 2,500 in the past five years. That process needs to be supported as part of a strategic plan, with specific budgets set aside to ensure it takes place. Such training provides great benefits by helping people to care for themselves.
An interesting point is that the new health and safety legislation which came into force recently deals with the position of care workers entering people's homes and associated risk assessments which must be carried out in a patient's home. For example, if a respite worker is sent into a family carer's home a risk assessment must be carried out. However, while family carers are in that situation all the time, no one seems overly concerned about the risks that might exist for them. Therefore, skills training is required. This should cover aspects like health and safety, general nutrition and a package that ensures the carer's own health is protected for as long as possible.
One of the issues raised on our national careline and in our national centres is what will happen when a person's role as a family carer ends, for example, when a mother dies or if the burden gets too much and a mother must be put in a nursing home or an alternative source of care found. At that stage the carer begins to focus on what will happen to him or her when change occurs. Carers ask: "What will I do when my caring role is finished?" or "Will I return to employment?" The average length of care for an older person is approximately three to five years. Carers are out of the work environment for that period and their skills may become obsolete. There is much concern about how they will manage in the future. A specific strategic focus on this issue is needed. We would like to see it bought into by the Department of Education and Science, the Department of Enterprise, Trade and Employment, trade unions and employers, which should come together to consider how the issue can be addressed. This is certainly one of the top four or five issues for carers, particularly for carers of older people. Under United Kingdom legislation, all state agencies must be trained on issues pertaining to family carers and their rights and entitlements. We would like to see a similar situation develop for State agencies here.
My next point refers to work-life balance policies that would support carers, particularly those working on a part-time basis in a paid job while providing family care. The term "work-life balance" has drifted into use in the past five or six years. However, while it is easily said, in practice it raises many issues, particularly for employers. The Carers Leave Act, which deals with carers' benefit, is not bad legislation and was not a bad place from which to start. However, it must be reconsidered with a view to making it more flexible because it does not address the reality of providing care. The Carers Leave Act deals with blocks of care and blocks of time off work. However, given that two people may be willing to share the provision of care while also holding down jobs, the legislation should be amended to make that possible. We must try to develop legislation that makes it easier for carers to provide care and work at the same time, as well as putting options in place whereby care can be shared, whether between spouses, siblings or otherwise.
A further aspect we would like to have addressed within a national strategy concerns information. Family caring in Ireland is not often discussed. It can be a taboo issue among family members, for example, with regard to who will look after mother and father when the time comes. For that reason, while there seems to be no need to have information on the subject until it is needed, when it is needed, people do not know how to source it — a point applicable to information on many issues. The Carers Association would like particular measures to be taken in this regard. Resources should be invested in the national careline to put it on at least a 12 hour basis. A website run by the UK Department of Health is well worth examining. It is one of the best websites I have encountered with regard to providing information for family carers and is a model Ireland should consider. All necessary information is available on the site, which has direct links to information officers in Departments, who respond immediately to queries and take bookings from carers for sessions within various types of chatroom. A similar site here is a must. The costs, which are largely once-off, would be insignificant in terms of the overall budgets of various Departments. According to the census of population, approximately 60,000 family carers have access to the Internet — close to half of the family carers in Ireland. Therefore, a website would be a cheap way of moving information quickly to family carers.
Social welfare officers carry out income assessments with family carers with regard to the carer's allowance. We would like the role of these officers to be broadened in order that they would also provide information to family carers. They are often the first point of contact carers might have with any information service but the system is not being utilised. It would only be a matter of providing a few leaflets to help carers understand what is available in terms of entitlements and rights for carers, and voluntary organisations that can help them. Many organisations exist to help family carers but service is sporadic and not pulled together within one sphere. The Citizens Information Centres are doing a very good job and should have increased funding invested in order that they can expand their family care services.
That is a brief overview of what we would like included in the strategy. Currently, family carers input 3 million hours into the health service. We are concerned this service is firmly nestled under the auspices of the Department of Social and Family Affairs given its responsibility for the carer's allowance and believe the Department of Health and Children should take a firmer role in this area. Family caring needs to be viewed as a fundamental, integral part of our health services. The removal of 3 million hours per week from the health service would result in an escalation of the problem. We need to develop a strategy in this area.
The Minister for Finance referred in his budget speech last year to the work being done in the area of disability, in particular through the Disability Bill and stated that long-term strategic planning would lead to consistent services for people with disabilities. We need to introduce a similar plan for family carers and to clearly state the position in which we would like family carers to be five years from now and to identify the steps needed to get there. Obviously, finance plays a part in everything. We appreciate enormous resources would be required to back up such a plan. However, if we state openly what we wish to do, we can fight the battle for resources at a later date. The State must state clearly how this is to be done and should value the role of carers to a greater degree than is currently the case.
When one compares the cost of caring for a person in an institutional setting as against taking care of him or her at home the savings are in excess of €2 billion per year. The input from the Department into family care is running at approximately €220 million, leaving a great deal of scope for change. The issue is one of choice in terms of where the Government wishes to put its resources and how it values family carers within the overall health service. The Department of Health and Children would prefer to leave the matter in the hands of the Department of Social and Family Affairs for as long as possible. While the Department of Social and Family Affairs is doing a good job family caring is part of the health service and needs to be recognised as such. That is an issue which a carer strategy would address.
