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JOINT COMMITTEE ON SOCIAL AND FAMILY AFFAIRS debate -
Tuesday, 23 Sep 2003

Vol. 1 No. 13

Full-Time Carers: Presentations.

This committee is currently reviewing the position of full-time carers and submissions have been made to us on the issue. This meeting has been convened to allow the committee to seek elucidation of the points made in some of the written submissions. We have six groups making presentations today. Each group will make a brief presentation which will be followed by a question and answer session. We will keep the questions confined and to the point as the groups have travelled a long way to be present.

I remind visitors and members of the groups that members of this committee have absolute privilege but the same privilege does not apply to witnesses appearing before the committee. Members are reminded of the long-standing practice to the effect that members should not comment on, criticise or make charges against any person, or a person outside the House, or an official, by name or in such a way as to make him or her identifiable.

The first presentation will be by Community Connections. We have with us today Mr. Sandy Holland, project leader, Ms Teresa Hart, Mr. Liam Kirwan and Ms Ann McGowan. I welcome them to the committee and thank them for accepting our invitation to address. I invite the group to make its presentation and then members of the committee will ask questions to elucidate the issue and gain information which will help us in the preparation of our report.

Mr. Sandy Holland

I thank the committee for the opportunity to address it. In looking at the position of full-time carers the committee will have heard about the big issues concerning social welfare payments and means testing. For this presentation I want to talk about two or three issues we feel can be progressed within existing resources.

I want to encourage the committee not to underestimate the severity of the situation in which many carers find themselves. A study completed recently in the North-Western Health Board region found that of carers caring full-time for an older person, some 40% had a mental health difficulty of some kind. That is a fairly severe statistic. To put it in context, if any large farmer organisation found that 40% of its employees were under severe stress, there would be some hard questions to ask.

In terms of practical ways these situations can be overcome, a similar study carried out in New York found that when one-to-one counselling was offered to individual carers it often helped the situation for both the carer and the person being cared for, to the extent that a person, particularly an older person, was kept out of institutional or nursing care for a lot longer. The study found that the cost of counselling and personal support to the carer was a saving on what it would have cost to have the older person go into institutional care. There are practical ways within existing resources through which the position of carers can be helped.

One of the key points in our submission looked at the provision of home respite care. We felt strongly that one of the missing links in Ireland is that there is no formal structure for the provision of such care. In other words, no packages of care are being put into the home to support both the carer and the person for whom they are caring. In our preparation for our visit today we looked at similar services in Great Britain and Northern Ireland. There, the way in which both the legislation and the structure of services progressed means that there is a case manager for every carer. A package of care is put in place for both the carer and the person for whom they are caring. This means there is co-ordination between home help and home respite services thus giving the carer the opportunity to take time out from caring while maintaining the benefits of keeping someone in their home environment rather than putting them into hospital or institutional care.

We feel strongly that there must be better organisation of social and health services and that there should be case managers in order that packages of care can be put in place. At present there is a lack of co-ordination between home help services, public health nurses and community and voluntary organisations which are providing respite. They are all working in a positive way but the fact that there is no case manager is significant.

Also in Great Britain and Northern Ireland, under new legislation which was introduced in recent years, when the social services department is assessing a person for care needs, whether an older person or a person with disability, the carer is also assessed automatically as part of the process so that at an early stage the needs of the carer are identified. That is another practical way within existing resources that the needs of carers could be identified at an earlier stage.

The final point I wish to make concerns the importance of providing community supports for carers to take collective action. We at Community Connections have worked, as can be seen from our submission, as a community development project along with the carers' group whose representatives are here with me today. We have worked hard to support that group but not to take away from its autonomy. It is important that carers have both the opportunity to come together and influence the health services they are using - the carers group in north Leitrim and west Cavan has been very successful in working with the North-Western Health Board to develop services - and in the wider field that they are given a sense of power to change their own circumstances. That can be done through social support and through community development programmes like ours. We can give carers the opportunity to be more engaged in both community life and in determining the services they use, whether the North-Western Health Board or other organisations which support carers. Within the realms of the political arena, committees such as this give an opportunity to us and the carers' group to feed into the process that moves the nature of the way in which we look at caring in Ireland forward.

In conclusion, I would like to encourage the committee. It is very important that carers are not regarded as being another group who are looking to be somehow absolved of their responsibilities in caring for their family members, loved ones or friends. That is certainly not the case and has never been the experience that we have found over the past four or five years that we have been working in this area. It is very important to stress that we should put the supports and the services in place to allow carers to fulfil their caring role and fulfil the vocation they have chosen and not to absolve them of the responsibilities they have chosen to take.

I welcome the group. What does Mr. Holland mean by a case manager? While it might be something that will work, we do not want the review to result in more jobs for the boys and girls and less services for the people who need them. I will give an example. The Department of Social and Family Affairs is paying a carer's allowance and the health boards are taking away home help hours. How does the case manager work? What is his role and how many people would that personlook after?

Mr. Holland

The main theme of a case manager type person would be to co-ordinate a package of services for both the carer and the person being cared for. For instance, in the UK that would be undertaken by a social worker. They assess both the person and the carer at an early stage and that would be reviewed on a regular basis, say every six months or a year. They would co-ordinate a variety of services in that package whether it is primary services like home help services or a respite break. They would also co-ordinate input from a voluntary community organisation which provides respite, some of which happens in Ireland. For instance in the north west the Multiple Sclerosis Society provides a certain degree of respite service for its client group. The key point is that it is very much a co-ordinating role and they are responsible for putting together the holistic package of care for the person.

I welcome members of Community Connections and compliment them on their submission, which I have read. I compliment them on the way they produce a newsletter on a monthly or quarterly basis. This is a very valuable publication, which maintains the link between carers. Community Connections appears to be stating that based on its experience carers should be entitled to more than one social welfare benefit. Would the group recommend abolishing the means test for the carer's allowance? If the Minister were to decide she did not have the money for that immediately, how could that be phased in to bring more people into the net?

Ms Ann McGowan

I have been looking after a person for 16 years. While doing that I have had no private life and I am struggling to rear a family. No money can replace that, speaking from the heart. Caring goes from cot to death in some cases. How can someone manage when involved full time in that? One has to live with it to understand it. There is a personal loss of freedom and it is hard to try to work a marriage around such a person.

Not everybody is mentally disabled - I hate the word - there are old people in the house. How can a young couple work that and where do they get compensation for their loss? Throughout the country, including on every offshore island, there are thousands of people caring. They need the support of groups like Community Connections and their carer development officer. If they lose them and they feel battered, as any carer can feel, they feel disappointed, disillusioned and very angry. No money can compensate for that as they must work 24 hours each day and not eight hours and walk off. I do not know how to work that. I have no alternative. People need the confidence and the backup.

We should be given some recognition that we are doing a good job and given the confidence to keep at it. I would not be here without Community Connections and my carer development officer. I would not have the confidence. That is what they have done.

Mr. Holland

To answer the Deputy's question, he was looking at the practical issues: if there is no money how is it possible to get around the means test problem? In our submission we identified that there were anomalies within the existing system that meant that for example an older person who was claiming a State pension could not receive a carer's allowance. This means that very often an older person on a relatively small income had the extra burden of the caring role with no financial support from the State and the knock-on effect of that was that because they were not entitled to a carer's allowance, they were not entitled to a respite allowance either.

I can well understand the practical issues from the Department saying: "Look, if we don't have the money, how do we get around this?" Maybe there is work to be done to look at fine-tuning the system, to try to iron out those circumstances in which people can find themselves. For instance with the means test if someone owned property or land, which has a relatively high value, they could find that unless they dispose of the asset they have a very small cash flow. If they are in a caring role they can find they are not entitled to the carer's allowance and have a relatively small cash flow or income to support the circumstances in which they are. Maybe the work is to fine-tune the system.

Ms McGowan

Many of those old people who care for someone else have paid their taxes and given the State a service. Does the State not owe them something? It is only a small point but it is an important one.

I thank the representatives of Community Connections for their presentation. A few matters concern me. Some 40% of carers suffer from some form of mental illness, which I presume to be stress related illness from the constant 24-hour seven-day pressure. I can well understand this, which is a matter of great concern for us. I am also concerned that there is no formal structure for home respite. Such respite has the potential to deliver great relief to people and allow carers to get on with their lives also. I note that Community Connections states that in Northern Ireland the carer and the client are both assessed. I would like the delegation to expand on that, because it seems peculiar to assess a carer who is working 24 hours a day, seven days a week and who would be most glad to get those people.

I wish to refer to two other matters mentioned by the delegation. I agree with the need for a counselling service to deal with stress and mental illness. On the idea of having case managers, to which Deputy Ring also referred, I am somewhat concerned as I believe that is where the health board was in error in creating a form of management structure which became a mini-industry in itself. I wonder if the proposal would provide value for money or whether funds might be better spent on providing respite to carers or in some other way.

Mr. Holland

In the interests of clarification, without taking away from the excellent respite service provided by the health board and some community and voluntary agencies, our point is that there is no national structure in place at present in that regard.

On the case manager proposal, perhaps it should be considered in terms of a reorganisation of existing resources, rather than creating another tier. I share the Deputy's concerns about creating another layer of management, which can sometimes take away from a service rather than adding to it. The current system of assessment in Northern Ireland and Britain is a very useful exercise in identifying potential problems at an early stage, so that they can be dealt with before becoming a major issue. That may be the reason for that provision in the UK legislation regarding carers.

I wish to be associated with the warm welcome to the delegation. Without being in any way patronising, we are reaching out to hear what the delegation has to say. I tend to bring my personal background to political matters. In terms of understanding the issues involved, I particularly recall the excellent caring service which my sister gave during my father's serious illness. In my constituency of Dublin South West, I have a great deal of contact with the carers' association which operates in Tallaght and Clondalkin and I hope I can continue to be responsive. As Deputy Ryan said, we receive a great deal of correspondence on the matters raised in the presentation by the delegation. Some people may suggest that that is a waste of time, but I do not believe it is. If, as legislators, we are to effect change, we must first hear exactly what is required, much of which we pick up in the course of our daily lives. I do not believe I am unique in my regular practice of personally opening each letter I receive. Although my helpers tell me I do not need to do so, I regard this as a way of understanding what people are telling us, as in the correspondence before us today from Gorey, County Wexford, which makes some strong points and questions about whether the system is working.

Perhaps the system is not working, but we will never make it work unless we share and exchange views. In the context of today's meeting, we should hear what is being said to us, while recognising that it may not be easy to provide the required response at a time when people are lobbying on many issues. I share the view of my colleagues that the work of Community Connections is worthy of support. Those who engage in caring services in communities throughout the country should be supported by us - that is the very least they can expect. I wish the group well.

Ms Teresa Harte

The sad reality is that our services, especially in the North-Western Health Board region, in terms of casualty facilities, especially for the elderly who are more dependant on them, are closing. That is sad. It is a matter of great concern that people are not being looked after properly and have to wait many hours for a doctor. Previously, such casualty facilities were always available. The present position is particularly difficult for the elderly.

There is now a wider debate in this regard. I have visited Tallaght Hospital on a number of occasions in recent days to see the situation. While Tallaght is not the centre of the universe, it is a good example of a busy general hospital. Clearly, the problems which have been highlighted during the past week by the IMO and other organisations arise from a need for places so that people can be properly looked after. On a daily basis, I receive calls from families of elderly people who cannot get such places. The delegation is right to highlight the issue, although it is part of a wider debate.

Ms McGowan

As a carer, I believe I speak on behalf of all carers in this country in calling on the Government, through this committee, to build on what has already been provided in the north-west through Community Connections and our carers' development officer. We need support and confidence in what we are doing to provide a service. I urge the members of this committee to give us their best possible support. In many cases, carers are looking after people in situations where other family members will not give any help.

I thank the members of the delegation for their presentation. As they are aware, this all-party committee has undertaken a comprehensive study of the position of full-time carers. We will take account of today's presentations and submissions by other groups which provide a representative view of the problems which carers encounter in the course of their daily work. I compliment the delegation on a frank and forthright presentation and response to questions. I hope we will have a report to Government from this committee within the next six to eight weeks.

We will now suspend briefly while awaiting our next delegation.

Sitting suspended at 2.38 p.m. and resumed at 2.39 p.m.

I welcome the representatives of Caring for Carers Ireland, Ennis, County Clare, including Mrs. Judith Ironside, president, Ms Eilish Smith, chairperson, Mrs. Mary McMahon, national treasurer and Mrs. Brigid Barron, national co-ordinator. I invite them to make their presentation.

Ms Brigid Barron

I thank the chairman and members of the committee for inviting us to this meeting. We are very pleased to represent the voice of family carers. Caring for Carers was established in 1988. It is a national non-governmental organisation with a growing network of 50 groups throughout the country, North and South. The aims of the organisation are to promote the health, well-being and quality of life of family carers and those for whom they care. It seeks to achieve this by promoting recognition and providing respite care, financial support, information, training and advocacy to promote social inclusion. Since the launch of our carer's charter in 1991, the work of Caring for Carers has been underpinned by the rights outlined therein.

The information contained in our presentation is drawn from the experience gained during 15 years of work with carers, from the carer's clinic evaluation, specific research projects we have undertaken and our training programmes. We listen to and work with family carers and we have gained valuable data from our assessments following the training programmes. The carer's clinic was a pilot project which commenced in April 2001 and ran until December in the same year. I am glad to say the Mid-Western Health Board has continued to fund the carer's clinic initiative which is seen as a very valuable service in meeting the needs of home-based family carers.

It is significant that in the profile of family carers of older people 46% were found to be aged over 60 years, 39% had given up work to care, 21% were caring for more than one person, 46% experienced high levels of stress, 56% rated their health as being fair to very poor and 14% had been caring for longer than 20 years. According to the profile of dependant persons, 80% were over the age of 60 years and 88% had high dependency needs. The objectives of the clinic are to provide one-to-one confidential advice, support and information to the carer. In identifying the needs of carers in the course of the clinic in the period under discussion it was found that 43% were referred to health service professionals. This indicates that the service of a provider was necessary but not forthcoming. They were then referred by the director of the clinic to health service professionals. Of carers, 48% were not receiving the benefits or entitlement for which they were eligible. They were referred to the social welfare section. A further 17% were referred to voluntary agencies and 14 % to the housing services to deal with their housing problems.

To turn to community, health and social care issues, the greatest needs identified by family carers are a break from caring, in-home respite and day care services for the dependent person. Family carers are an "at risk" group as they focus primarily on meeting the needs of the dependent person to the detriment of their own health care needs. Due to the 24-hour practical and supervisory demands of caring, many family carers experience isolation and social exclusion. Ageing parents must care for and manage young adults with challenging behaviour which can present as verbal and physical abuse of the parent. Parents worry about the care and time they can give to other children in the family. Carers feel there is little or no consultation in the planning for the medium to long-term care needs of the dependent adult or young person.

Under the heading of community support issues, we have found through the clinics that carers are unaware of the limited supports available to them and generally fail to seek support until they reach a stage when they can no longer cope. Help should be provided at an earlier stage. In some instances service providers are not pro-active in ensuring that family carers obtain essential services, entitlements and benefits. Providers tend to focus within their own service area or discipline and fail to look at the carer's needs from a holistic perspective. Caring can lead to family breakdown due to lack of understanding and support from the extended family. Frustration and stress can contribute to abuse and neglect. When a patient is being discharged from hospital family carers are promised home support, such as home help and nursing services. In many cases, however, these services fail to materialise or are inadequate to meet the needs and expectations of the patient and their carer. Vital services are frequently withdrawn when funding runs out. Our research has shown that when a carer has requested a service or applied for an allowance and been refused, he or she is unlikely in the future to reapply for that same service.

Through our analysis of the findings of the carer's clinic we have discovered that poverty is a major concern for family carers. Of those who attended the clinic, 48% were assisted in applying for the carer's allowance. The majority had no savings whatsoever and found themselves in relatively poor circumstances. The issue of means testing is of great significance for family carers and it involves a complex and poorly understood process. Family carers and others are reluctant to apply for allowances, preferring to leave well enough alone for fear of losing what services they already have. Carers are fearful of exposing their financial situations and losing control of an outcome having initiated an application for an allowance. No means testing guidelines are available in respect of the financial services and supports available from health boards.

The additional costs of caring can create pressures on carers. Home heating for frail older people and those with disabilities can pose difficulties. Many carers, particularly those who are older, live in poor and inadequate housing which needs modification and improvements in respect of heat maintenance. The Health (Nursing Homes) Act must be amended as the payment of subventions to families militates against support care in the home. We would like to see subvention paid to carers in the home as well as to nursing homes. The primary needs of carers include recognition of their role, respite care, adequate financial support, information and advocacy to promote social inclusion.

We have recommendations in respect of the issues which have been raised. Caring for Carers calls for the establishment of a national strategy to support family carers which should be underpinned by legislation and a financial commitment to support caring in the home and independent living for older people. Caring for Carers calls for the introduction of a comprehensive outreach system of information and assistive and communications technologies to promote independent living, security and health and social monitoring for vulnerable older people in the community.

There is an urgent need to introduce a new discipline of care in service provision to enable policy makers, health service providers and educationalists to embrace the reality of home-based caring. Family carers must be acknowledged as a distinct group of people who seek parity of esteem with other service providers. Family carers are the key providers of care in the community and they have a wealth of experience and expertise in the care of their dependent person. They should be acknowledged as partners in the provision of that care, but also as people who are themselves in need of support and care.

Under the heading, "Statutory, Professional and Voluntary Support", we advocate comprehensive joint needs assessment for family carers. This includes their financial status, housing, health and social care needs. It is important to look at the carer's ability to care and to continue to care, the dependency needs of the person being cared for, as already described in respect of the carers' clinic. Also, the needs of the extended family must be considered. We call for the development of integrated packages of care and the identification of key support workers within the community.

We talked about the introduction of care and case management in the earlier presentation and we very much advocate the establishment of case management. It would promote services which are integrated, needs focused, person focused, holistic and flexible. We call for more consultation with patients and family carers and care plans should be agreed and each action and responsibility identified. The provision of appropriate information should be clearly explained in the context of the individual's caring circumstances and ongoing advocacy is required to ensure that needs, as identified by the carer, and additional needs are met through referral and ongoing follow-up.

Under the heading, "Health Gain and Social Gain", we recommend the establishment of a health screening service and health promotion programme to focus on promoting health gain and social gain for carers. The health of carers is a key issue. They do not look after their own health but look after the needs of everybody else. We have cases in which mothers are failing to attend appointments for chemotherapy because of the demands of caring within their own circumstances.

We call for the establishment of a comprehensive counselling and family therapy programme for carers, particularly in respect of families with children or a young adult with a learning or physical disability.

Service providers traditionally focus on the needs of the client. This approach must become more comprehensive and include an assessment of both the carer and the patient. We require the establishment of 24 hour nursing advice and support for the family carer through the use of information and communications technology. This would promote home based care. We also desire the provision of adequate in-home supports, such as domestic help, nursing services, home adaptation, appliances, incontinence services and help with transport.

We talk about information for patients and family carers. In County Clare, in partnership with the Mid-Western Health Board, we are piloting a patient discharge summary to provide information to patients and carers at the point of patients' discharge from hospital. In addition, we hope to develop a carer's record of care so that the carer will maintain a record of his or her patient's ongoing needs and preferences.

On education and training, some very extensive training programmes have been established in Clare and other counties to promote the integration of family carers and build confidence and trust in health services. We seek the development of locally based community support initiatives by establishing community centres with outreach information and communication technology links to homes of vulnerable older people and their family carers.

We ask for reform of the welfare system, which is required to enable carers and their families to live in dignity. A realistic assessment of the cost of living and the payment of an allowance appropriate to meeting that cost must be provided. We call for a relaxation of the means testing for the carer's allowance. We propose that it should be paid to all full-time carers. A payment for the work of caring should be considered, along with the provision of a continual care payment to meet additional costs associated with caring.

I will consider the summary of the main findings. The degree of poverty experienced by family carers came as a surprise to us in the clinic. It is an acute concern within the community. We can see hospitals and patients in beds but do not see the reality where quite old people are caring for spouses who are themselves elderly. Many of them are heavily dependent. The carers' own health must be considered. They are an at-risk group with regard to their own health care needs.

On the lack of home supports, there is no great commitment to providing a comprehensive seven-day week service regarding caring for dependants in the home. There is a need for parity of esteem in the relationship between carers and health service providers. The importance of social supports provided by non-governmental organisations, such as the establishment of carers' groups, the training programmes, the respite weekends and breaks, and recognition for carers, must be acknowledged. If we have got any feedback from carers in terms of our carers' groups and the respite care fund we administer through the clinic, it is that they appreciate that they are recognised for what they do.

I compliment the delegation on the report. The group has done some excellent research and has recognised the nub of every single problem. I was shocked, but not surprised, when I read that 46% of carers are over 60 years of age. How many times have we heard people bemoan the fact that a carer died unexpectedly? They say, "Isn't it awful because Mary was looking after Johnny?" I now realise that it happens because the carers do not look after their own health.

The other statistic that shocked but did not surprise me concerned the number of people who do not know what rights they have or what assistance is available to them, either from the Department of Social and Family Affairs or the relevant health board. Ms Barron has made a most telling point today, namely, that carers want to be treated as equals by the health boards instead of being thought of as the enemies.

A simple example from my constituency, which occurred last week, concerns a man who works in a Government Department and who goes home every week-end. He has an elderly neighbour who does not have any family. Every week-end he brings this neighbour out for two glasses of Guinness. The only reason he does so is because the neighbour never gets to go out. An official from the health board visited him recently, gained his confidence and asked, "Johnny, do you go out?" "I do," he said, "I go out on a Saturday night." The man was receiving an hour per day of home help but it was reduced to two hours per week as a result. If that is treating people with equality, it speaks for itself.

The delegates have summarised the issue very well. What carers want is recognition for the difficult job they do. I note how frustrated the previous speaker is with the whole system. It is degrading for a person who is prepared to look after an elderly relative when a social welfare official doing the job he is sent out to do and who is given his instructions by the Department - visits and inquires how much land or savings the person has. Carers are prepared to take on a difficult job that the State cannot take on, yet we are treating them like criminals. This is why many people do not take up on what is available to them. The delegate is right in saying that they are quite prepared to do what they have to do themselves because they are afraid they might lose the few home help hours or respite or whatever they are getting from the State. This is wrong. They have to be treated equally.

I compliment Ms Barron on her report. She has covered everything, including the difficulty carers face and the recognition they seek. This has been a very worthwhile meeting and we have listened to all sides of the argument. The committee hopes to make a recommendation to the Government and the health boards. I, along with the other members of the committee, am supportive of carers and we really have to do something for them. Is Caring for Carers Ireland worried that so many people over 60 years of age are carers? Where will we find carers in the future?

Ms Mary McMahon

I agree with the Deputy. The demographic changes show that in the future, even up to 2020, when we will need care - we will all need to be cared for ultimately - there will not be sufficient resources within the community. I know the Deputy has an interest in the statistics. One of which we have become aware is that 80% of all care is given in the home. More recent studies show that more than 90% of all health care is given in the community. Where are the budgets? Health gain and social gain is what we are looking for with regard to carers.

It was stated that some carers find difficulty in accessing their rights. We have an example of a carer who, having qualified for the old age pension, no longer received her carer's allowance. There is a great anomaly in the administration of the existing benefits and allowances.

As was said in the earlier presentation, we are looking to the abolition of the system of means testing. I know there are other instances such as with children's allowance. It can be addressed by taking a holistic view and looking at the total income of the individual or the family. Unless we can continue to put supports in place, there will be no carers in the community in times to come.

I welcome the delegation and thank it for its fine presentation. On page 4, section 3.4, I note a reference to social welfare payments. Is there a huge lack of communication there? It is a very high figure.

Ms Barron

Everybody knows about the carers allowance, but carers do not know that it might be something that would benefit them. They do not see it in that context. Carers do not watch the budgets or note who gets increases and who does not. They are busy caring for their dependants and looking after their families. They are not tuned in to the idea of benefits and entitlements.

I formerly worked as a public health nurse. When carers came to the clinic we did not investigate people's financial status. It was none of our business. That is a misconception amongst professionals. This is something I have learned since I came to work in the carer's clinic. Every service provider must be holistic in its approach. In sitting with family carers and asking them if they had any savings, the majority responded in the negative. On the basis of that response I suggested applying for the carer's allowance. I explained to the individuals that if one applies for the carer's allowance one can be refused on two grounds - if one's income is over the limit or if the care input is not adequate. Once individuals felt happy that they complied with this, they were then happy to divulge other information and proceed with the application.

We also told individuals that they could appeal a refusal to grant the allowance. I suggested to such individuals how they might go about this if the need arose. I completed the application form for most of those people. That is what was needed. It is not that they could not do it. The application form runs to several pages and some people did not want to know about it. We have helped them with completing the form. There is no point in handing them application forms and reams of information. It is not that they were illiterate. They were quite intelligent people that were managing complex caring situations. The encouragement and support they received through the carer's clinic enabled them to proceed with the application for the carer's allowance.

I fully agree with section 6.8 on page 8. If money was made available to keep people at home rather than the health boards making huge weekly subventions to nursing homes, there would not be such a demand on nursing homes as currently exists.

I compliment the 16 points in the document; they are very practical. When we are making our final submission, the committee will try to include as many of those as possible.

Ms Judith Ironside

I thank the committee for listening to us. I was pleased to hear the charter mentioned. Since its launch in 1991, everything we have done has been based on this charter. We will meet with Professor Joyce O'Connor next January. Professor O'Connor compiled the charter with the help of 32 organisations. We are going to revisit it, particularly concentrating on the European context and how the Presidency, which Ireland will hold next year, might be used in this area. The European umbrella body is looking at it as a possible model for a European charter. We would like to see it embedded in the European Parliament. We cordially invite the committee to come to the National College of Ireland on 30 January next when, with Joyce O'Connor, we will be trying to further this cause.

I compliment the delegation on its excellent research document. It is clear and well presented and gives a direct picture of what is happening with care and family carers. It may be a picture that some do not want to look at. I am concerned about the profile of family carers and the fact that 46% are aged 60 and over. Did the organisation research the number of carers that are 70 and over or 80 and over and caring for younger members of their families? Some older carers are concerned about what will happen to the person they care for when the carer dies. What are the views of the delegation on this?

The organisation mentioned the issue of carers needing breaks and we all agree with that. When health boards or Departments want to make cuts, savings or comply with employment ceilings in health services, the first group they go for is the hands-on group. In my health board area, 80,000 hours of home help were cut. That represented 40 silent jobs that nobody said boo about. The board reduced the services and that was it. We are seeing this picture day in and day out. I wish the organisation well.

I compliment the group on its presentation. I have personal experience in this area as my wife cared for my mother until she died at age 95. Not enough thought is given to public health nurses. They are counsellors, form fillers and more besides. The level of help that public health nurses give carers is unknown. Social service groups also do great work. I feel strongly about the idea of home-based subvention as the current system places everyone into nursing homes rather than offering a choice of staying at home because of the financial incentive. There should be a choice and home-based subvention should be introduced along with far more help for carers. If the carers are not helped, we will not be able to keep people at home.

Ms Barron

Carers want to care and older people want to stay at home and die there. It is a basic desire with all of us and we must honour the commitment of families and the willingness that is out there. As was mentioned earlier, the willingness will disappear if the support does not come. They cannot continue.

If people had listened to Mrs. Ironside 13 or 14 years ago, we would not have half the problems we now have. I had the privilege of working with her some time ago and all of these points were raised at the time but we did not listen. I am concerned about the case for the co-ordination of effort. When Mr. Holland raised it, it was treated in a negative fashion. He was unfortunate enough to mention case managers and the reaction was to label it as a layer of bureaucracy. However, he may have been taken up incorrectly. I would not like this committee, on the basis of the term "case managers" to refer to this as more bureaucracy. There are many people within the service but there is a total lack of co-ordination, whether that is home helps, district nurses, therapists or geriatricians. It will be an essential part of the committees report and its recommendations but I felt it was treated badly. I would like to hear more about the contents of page 10 - it is a fundamental requirement with many of these services and I want to hear more about how it might be done and by whom. I do not want to see more bureaucrats or suits. However, we are slipping up in the area of co-ordination of effort.

Ms Barron

My own background is in public health nursing. I have been out of the service for some time but when I was there, there were many talks about team meetings, case management and, in some instances, one met people informally. Even in doing that, it was amazing what one could achieve by sharing a small amount of information about a common client. One is not dealing with another layer of bureaucracy but rather a system of care, of identifying needs and one where service providers meet. The holistic joint approach to assessment is the first step where the issues of health, housing or finance are identified. One can have a team meeting and the best response to meet those needs can be discussed. It is not bureaucracy.

There are excellent public health nurses in the communities. One must deal with promoting an integrated seamless system of care for older people. In Clare we are piloting the patient discharge summary in which a comprehensive report is compiled by the doctors and nurses indicating the ongoing requirements of that patient. The carer has access to this, as has the public health nurse and referrals are made to, for example, the occupational therapist or physiotherapist. This means that each person is aware of what the carer and patient require. It is not a new discipline. It is a way of working; it is a change of attitude and it is about sharing information and being there to support the patient and the carer at home.

I want that point to be in bold print and underlined. I will not get another opportunity to suggest that.

I congratulate the delegation on their informative paper. I apologise for being late for the meeting.

I acknowledge the last point on the role of district nurses and the tremendous service they provide. Deputy Connolly referred to the situation in the North-Eastern Health Board region which was forced to cut 88,000 hours from of its system. In that region people were declared in need of care and yet the health care workers had to tell, for example, an elderly woman whom they were caring for, that the one hour per day aid they provided to help her to get out of bed in the morning was cut. Such a woman, caring for her elderly husband, was told that she could only get out of bed twice a week, and at the weekend when her adult children were home.

This is the extraordinary situation we have found ourselves in. We have to answer questions in our clinics and sometimes come into conflict with the district nurses who felt we were getting at them when we were being asked to intercede. We are not getting at them but at the system that allowed this to happen. In the North-Eastern Health Board region, for example, 400 extra people were employed in the administration section and only 100 in the front line of nurses and doctors. This is where we have a problem.

I am from a rural background and deal with many farming cases. We had a great breakthrough a few years ago when a single person working on the farm who looked after elderly parents at home was granted entitlement to a carer's allowance. However, we now find that such people are being asked searching questions about the number of hours they work on the farm. In one case, a farmer's son who was being paid as a PAYE worker and received a pittance under that system, was turned down for a carer's allowance because he was working a certain number of hours on the farm. That man's parent will now have to go into a home because his son will have to get a job elsewhere in order to earn a living.

On respite care, I am aware of an 85 year-old woman who could not get her two adult handicapped children into respite for two weeks to allow her to visit her only other child in England. That was outrageous.

Ms Barron

I agree that it is outrageous but that is the reality in every county. I have referred here to reform of the welfare system. Last week, a lady in her 40s who is caring for her 87 year-old aunt-in-law approached me. Her husband is unwell. They have a small farm which is 15 miles from the nearest town. She has four children, receives €408 per month children's allowance, the carer's allowance and her husband is on farm assist. Her estimated income for a family of eight is €480 per week. The aunt-in-law is in receipt of the old age pension. How does anyone survive on such a small income in those circumstances? That woman was refused a heating allowance. We appealed that decision. In the course of our conversation she pointed out that her youngest child was starting school. She has a car because she has to drive to the school at 2 p.m. each day to collect her child. It was of acute concern to her because she did not know how her finances would stretch to meet that need. The other children use the school bus and this woman walks to the stopping point to meet them, but in the case of the other child she has to drive a ten-mile round trip five days a week. She did not know how she would handle that.

I call for reform of the system, looking at the reality of the family and the individual. Does the person need a car? What is it costing? What is a basic income to maintain dignity for people in the community? That is what is required. A couple of other things were mentioned——

We need to consider the issue of the small farm, the hours worked and so on.

Ms Barron

Yes. People are happy to share the information, provided they feel they are being treated fairly and honestly. Unfortunately, decisions are made in which people feel they are unfairly treated.

I thank the visitors for taking time out of their busy schedule and for their full and frank presentation to the committee. There was a significant number of questions and commendations.

Sitting suspended at 3.22 p.m. and resumed at 3.23 p.m.

I welcome the members of the DergFinn Partnership-Finn Valley Carers' Group, from Glenfin Street, Ballybofey, County Donegal. Mr. Anderson is the project manager; he is accompanied by Ms McLaughlin and Ms Kavanagh.

Mr. Paul Anderson

I thank the committee for giving us the opportunity of presenting our submission on the position of full-time carers in Ireland today. To us it is an opportunity to influence future Government policy regarding care of those whom we love and care for so much. It gives us the opportunity to get involved in the democratic process directly affecting all our lives. I am the project manager with DergFinn Partnership, a cross-Border, cross community organisation working for the disadvantaged and their carers in the Donegal-Tyrone border area, and with the Finn Valley Carers Support Group. Since 1997 our community organisation, funded through PEACE I and PEACE II, has undertaken much work with carers, including carers' needs surveys, various courses, conferences and general support and advice. From this work we have gathered much anecdotal and quantitative information on the needs of carers in Donegal.

I ask the members to close their eyes and imagine what would happen if carers went on strike today. How would we all cope? It would be a real emergency. From what I gather, we have a sympathetic audience, but we need to get this past them. To that end, carers will be making a presentation about themselves and their needs in general. They have sacrificed their valuable time to make this presentation today.

Ms Ann Kavanagh

I am from Raphoe in Donegal. I care for my mother, Dinah, who has Guillain-Barré syndrome. I also cared for my daughter for 15 years until she died; she had hypo-gamma globulin anaemia.

Ms Frances McLaughlin

I am also from Donegal. I care for my son Brendan, who has cystic fibrosis and has had a lung transplant and a kidney transplant, and my daughters Frances and Martina, who both have cystic fibrosis. As I am partially sighted myself, I ask the committee to excuse any mistakes I may make.

Ms Kavanagh

We feel that sufficient and flexible respite should be provided and made available to carers and their families to allow them to live a normal life. All respite provided in the community at present, be it by statutory, voluntary or community bodies, that is, home helps, assistants, carers, care assistants and so on, should be reviewed to give an effective, person-centred and standardised provision of service to the carers and those for whom they care. We have found that current respite provision is haphazard, unco-ordinated, sparse and unfair. Taken in context, it is also well below the level required for the carers. Carers have the right to enjoy a normal life. There is little provision of respite and what there is is very restrictive. There is not enough support available for emergency and short-term care cover.

Ms McLaughlin

The carer's benefit and allowance should be amalgamated into one and the means test should be abolished. Overall, direct financial support should be provided to carers and further loss of potential earnings should be covered. Carers subsidise the health service for too much. The proper financial allowance should be made for increasing material and services costs for carers, including heating, laundry and other requirements. Also, carers should be allowed to receive payments up to eight weeks after the person being cared for has passed away. Carers over 65 should also be eligible for carer's allowance. People receive more money in their pensions than one receives as a carer and I cannot understand why this is so.

Carers should all be respected and recognised for the individual work they do. It is a well-known fact that voluntary carers save the health service millions of euro per year. This work has been ignored for far too long and carers have long been abused and taken advantage of. Carers cannot fight for their rights; they do not have the time or the energy to lobby as farmers, publicans, business people and other interest groups can. Carers do not have a voice and are therefore ignored. They receive no consideration for their work.

Mr. Anderson

All carers should automatically receive a medical card. This would enable them to see a doctor at no cost for consultations about those they love and care for and, equally important, about their own health, as their role puts additional physical and mental stresses and demands on their lives. The cost of medical appointments can often be a barrier to the proper maintenance of the carer's own health.

Ms Kavanagh

Subvention payments should be made to carers where the person being cared for is living in the carer's home. It is well-known that people receive, in most cases, better care in their own communities and homes, with one-to-one care from those who love and care for them. Their homes are less stressful, friendlier and more accessible to their friends and relations than a home or a hospital. Living in one's home or that of a relative is also more cost-effective. However, this saving to the health board is not passed on to the carer, although it means extra costs for him or her in terms of living space and social and family life.

Ms McLaughlin

We ask that the carees, using the carers as advocates, can easily apply for funding through health board vouchers or other schemes to enable them to employ a carer or use the respite of their choice to meet their individual needs or preferences, as was provided for in Northern Ireland in 1995. This would enable the support respite requirement of the carer and caree to be matched more effectively and allow the necessary flexibility that is missing in the present system of respite and support.

Mr. Anderson

We would like residential respite to be designed to meet the individual needs of the person being cared for. This means appropriate care for the appropriate person in the appropriate place. Currently young people with disabilities are staying in wards for older people. This situation negatively affects the mental welfare of the person being cared for with the obvious ongoing negative effects on the carer and health provision in general.

Ms Kavanagh

The Government should review the provision of private, paid and voluntary home helps. Relatives, neighbours and private carers are now sometimes reluctant to provide cover due to potential insurance difficulties.

Ms McLaughlin

On training, we seek the free education provision to be offered and made available to carers regarding caring and associated skills - first aid, lifting, handling, challenging behaviour, Internet access and stress management techniques. Such education will allow the carer to care more effectively, therefore reducing health services output, while maintaining their own health - back problems are endemic - and improving their confidence, self esteem and future potential employability. Why should it be that a Government-employed health worker is trained but not the voluntary carer?

Mr. Anderson

Additional support resources should be made available for disability and carer support groups and for community and voluntary organisations supporting carers and those for whom they care. Carers are often isolated and unable to participate as they would like in the community. Self help and support from groups allows them to support each other positively and to care more effectively for the caree. These groups often act as advocates for carers.

Ms Kavanagh

On receipt of carer's allowance or benefit, a carer's needs assessment plan should be undertaken by the public health nurse. This assessment should be agreed annually with the carer in a care contract that is tailor made and implemented by the health board in parallel with the caree's care plan. This system has recently been introduced in Northern Ireland for obvious reasons - the carer's physical and mental health is of the highest importance to the delivery of care and the life of those for whom they care. Also their needs in their situation need to be identified if they are to undertake this role effectively.

Ms McLaughlin

Carers must be treated as real partners in the provision of care on both an individual and health board basis with involvement in the design of the caree's care plan and the planning and running of health services. Carers should be represented directly on health boards. Health boards should network carer and disability groups together to help each other and to feed into health board planning and service. Carers and people with disabilities are not involved in the provision of their needs but they are the people who know their own needs the best. Carers should be involved in health provision from diagnosis, assessment and discharge to the death of the caree.

Mr. Anderson

All frontline health and social welfare staff should be given proper customer relations training. Anecdotally we have been presented with evidence that carers have been disregarded and not treated with the due respect that they deserve.

Ms Kavanagh

An independent ombudsman should be appointed to investigate the complaints of carers and of those for whom they care. Carers find it difficult to make complaints about services because they are dependent upon them. Often they are unaware how to complain or lack the self-confidence and energy required. They also have the anxiety that the service may be withdrawn if they do complain as they must complain to those who are providing the service.

Ms McLaughlin

Information packs or books should be developed and provided to carers outlining all relevant advice, services and support agencies and national and local statutory and voluntary entitlements. These packs must be user friendly and practical. Additional information regarding the caree's disability or condition should also be supplied. The citizens information service officer should visit the carer so he or she is made aware of entitlements. We have found that for carers - and everyone else - there is information overload, with the large numbers of leaflets and forms to be filled in. Carers are blinded by this over-provision of information and are often unaware of their entitlements and the supports available to them.

Mr. Anderson

Practical information and communication supports should be given to carers, for example, free phone calls, mobile phones and Internet access. A scheme should be set up to subsidise computer purchase and provide free IT training. Carers are often isolated and feel alone and unsupported. The provision of IT communications equipment could contribute to affecting this situation positively. Also it could allow them to engage in health information on the web and to communicate with others. We have found that many carers are willing to use computers for their own personal use.

Ms Kavanagh

Regional drop in and information centres with free counselling supports should be provided to carers through local carer, disability and community groups. This could connect recommendations one, four, five, eight and nine and allow carers to network, exchange information and socialise.

Ms McLaughlin

Carers in rural areas should be provided with access to a subsidised private taxi service through their free travel pass. Carers who are isolated are dependent upon their neighbours, friends and relatives for independent travel. The rural bus pass is useless due to the lack of proper public transport in rural areas. This is unfair and could be effectively overcome through this recommendation.

Mr. Anderson

An independent robust mechanism should be set up to monitor and implement the recommendations of this or any other submission regarding carers. This mechanism would require the necessary powers and resources to enable the effective implementation of any changes.

Ms Kavanagh

There have been many surveys and reports on carers in Ireland but the situation must be acted on now in a positive way. Our population, and the number of potential carers, particularly younger carers, is reducing. People who have a disability or a long-term standing illness requiring extra support are living longer, which will lead to an increase in the number of people diagnosed with Alzheimer's and dementia. Families are reducing in size, reducing the number of potential carers and both husbands and wives work, restricting their caring input. People have become less communicative and charitable with their time and volunteers are now more difficult to recruit.

We thank the committee for its attention and time. I hope this has been as worthwhile for the members as it has been for us.

I compliment the group on a very comprehensive report. I am interested in information for carers. It was mentioned that leaflets and documents are available, but it was said that there is no substitute for one-to-one communication between the carers and those who are co-ordinating the service. The carers should have someone to speak to about all the services that can be provided. That person could fill in the forms or delegate such work to assist with the problems that carers have on top of looking after the person for whom they are caring. I am interested to know whether the group is snowed under with information yet still needing somebody to help it in assembling that information.

Ms Kavanagh

Absolutely - the right information is not being received either. Yesterday, because I was coming to the committee I rang the CIC to see if I could get the information about why there was a problem - because I am not 65 yet - with people who are getting the carers allowance not at 65 but at 66. I think I rang three CICs, which are meant to be well up on everything, before I got the answer to the question. Even CICs could not answer my question so how can carers get the necessary information? There is plenty of information but it does not seem to be readily available, even when one knows where to go for it.

Mr. Anderson

We always advise any carer to go to the citizens information service. We found it to be excellent. Every budget introduces changes and legislation changes, so there needs to be someone with a broad idea of what is happening out there. We have found that one could contact a Government Department, health board or whatever and they might not be aware of the availability of an allowance or entitlement somewhere else. The good thing about the citizens information service is that it has its finger on the allowances and services available throughout the social welfare system, the health boards and local government. I definitely agree with the Senator about the importance of meeting people on a one-to-one basis. That is why we made the recommendation about a citizens information officer meeting a carer. It may be a very expensive thing to do but it is the best approach.

Having read the submission earlier and listened to the presentation this afternoon, I compliment all the witnesses. It is great to hear carers making the presentation. One of the things coming across very clearly in all of the reports is that carers need a life of their own if at all possible. That is necessary. In the context of respite and the possibility of respite being provided in the home, I ask the delegation what it sees as the benefits and the shortcomings of respite.

I wish to ask a question on home help. We heard about and know about the cutbacks in home help and we are trying to provide an upgraded home help service. How does the delegation see an upgraded home help service being developed and becoming of greater assistance to a carer in the home? It seems to me from some of the reports that many carers are injured or injure themselves. Many of the problems relate to back injuries and so on. Is any help or assistance forthcoming for carers in that regard?

Ms Kavanagh

The first question was about respite. The way I would like to see respite working is that if a person needed a carer at 12 o'clock at night to help them go to bed they should be able to get it. As it is, people get a home helper in the morning for an hour, maybe two if they are very lucky. Even if the home helpers do come in the evening people will be put to bed at 8 o'clock. One cannot just call somebody at 12 o'clock at night and ask them to help somebody to get ready for bed. That is the type of respite I would like to see going into homes. Also, where someone wants to go away for a break, they should be able to do so without putting the dependent person into a home. Somebody could come into the home and look after the person for a weekend or a week so that the carer can get away. That would require a number of people on eight hour shifts to come in to help out or perhaps working an overnight shift.

The training on avoiding back injuries and so on all seems to be voluntary. At DergFinn we put on quite a number of training courses for carers, which they attend when they can. I am aware that home helps or care assistants can get training in Donegal from the health board. The health board could bring more people in when it is providing this training. It does not bring in the carers in the home and give them training, just the home helps and so on. The health board is spending the money on training so it would not cost more to invite in carers as well and broaden the service.

I will try to develop the question of upgrading. Ask anybody what a home help does and they will say that some might come along and keep one company while others might come along and do much more work. Would the delegation see benefit in trying to upgrade or up-skill such persons and provide them with some nurse training skills?

Ms Kavanagh

Yes, absolutely.

Mr. Anderson

Definitely. As Ms Kavanagh said, we have done a number of cross-Border training courses for carers funded through Peace Two. Unless people are shown how to do things like lifting techniques they will hurt their backs. If home helpers are trained they can pass that information on to the carer also because there are carers out there who are lifting people and doing fantastic work, but they are lifting the wrong way. They then go to a doctor and are diagnosed as having injured their back. There is a myriad of training needs for carers that home helps could assist with if they were trained. There are tips and techniques for dealing with challenging behaviour which, if they were passed on to the carer, could make the carer's life better and the life of the person they care for better. It makes sense.

I have just two questions. First, I compliment the three speakers who were excellent. It may not be a fair question but I ask Paul to compare the good and bad in the services North and the South.

Mr. Anderson

I am not an expert on the North but I have studied some of what is happening there. As we are based in Ballybofey, obviously our work would be more oriented towards the South. In some areas the South is ahead, such as with the carers allowance and having carers development officers instituted in different health boards. The North has copied that. However, in other areas, like the assessment of the needs of a carer, the North is ahead. Where a person has a disability or needs care, the carer is also assessed at the same time. An assessment is done of their housing, respite and health needs, and they are also then helped with the forms so that they can apply for the carers allowance or other benefits. That is a very strong improvement in the service in the North. Overall, one service is as good as the other but they could learn from each other.

The point in relation to an ombudsperson to deal with people's complaints is a very interesting one. I do not know whether it was Ms Kavanagh or Ms McLaughlin who made the point that if people make complaints, be it against the nurse, health board or doctor, they feel that the service might be restricted or taken away from them. Appointing an ombudsman is a very good idea and we should look at having one to deal independently with a complaint.

Mr. Anderson

Ms McLaughlin was talking about the situation with her son, who had a lung and kidney transplant, was it?

Ms McLaughlin

Yes, lung and kidney.

Mr. Anderson

He has also got CF. He is living with Ms McLaughlin. He has written a book and done brilliantly in life. He has lived well past the years he should have because of health support.

He was treated quite badly by a member of staff in the health board recently and he does not need that. He is the client. That is where customer relations and the ombudsman come in. I said he should complain in writing and not verbally because it would not go anywhere. If there were an independent ombudsman it would strengthen that tool and people's awareness that the front line role in the health service is important. If one deals with someone equitably and fairly, even if that person has a complaint, he or she is going to feel a bit better afterwards. However, if a person has a complaint about a personality or the way in which he or she was treated that creates a negative impression of the health board which is reported in the newspapers.

Thank you.

Ms Kavanagh

Deputy Ryan asked a question about the carer's allowance and how that could be lacking in means testing etc. If the Minister for Finance could bring in individualisation for everyone else he can bring it in for carers.

That finishes on a high note. Thank you to all, to Paul, to Ann and to Frances. I am sure you do not mind my singling out Frances for an excellent presentation. It was very worthwhile and we will look through your paper in which, like the other two groups, you have made a number of interesting recommendations. Already we have a significant number of recommendations and we are only half way through the process. We have had 78 or 79 submissions altogether and are working through them. We thank the delegation sincerely for making a long journey, like other groups today. This shows the degree of interest in and passion for this subject. I hope that we have an opportunity to prepare a comprehensive report over the next six to eight weeks, and no doubt, like your colleagues, you will be looking for a copy of it in due course.

Sitting suspended at 3.55 p.m. and resumed at 4.05 p.m.

The next presentation is by Women in the Home, represented today by Ms Caitríona Lynch, president, and Áine Uí Ghiollagáin, vice-president.

Thank you Chairman, Deputies and Senators for the opportunity to attend this meeting to give members some details of the experience we have had with carers in the home.

We are a non-governmental organisation and have been in existence for more than 20 years. During that time we have been actively trying to support the role of women in the home - women primarily and historically, though things are changing, with men also involved.

We have many members from different walks of life - married, single, full-time in the home, full-time outside it or part-time. Due to the nature of the work, the vast majority of our members are from single income families and do not have social welfare entitlements. Most are of moderate means and come increasingly under pressure to leave the home, to leave aside domestic cares, both housework and primarily the care of the people involved, in order to go out to work to meet the ever-demanding financial pressures on them and their families.

I could go into great detail with this presentation, but having listened to the others, it is clear a vast majority of the points we wanted to make have already been made. I do not want to waste any time and will cut to the chase. There are a couple of issues that need to be supported in order to make the carers more self-sufficient and make the whole system more beneficial for all of us.

The first thing to be said - this might be the most important thing to be taken from this presentation - is that home carers save money. If money is to be saved, the home carers need to be supported. How can that be done? Deputy Ring has already made the point that the work of home carers needs to be acknowledged. Since the dawn of mankind it has been recognised that the care of people from the youngest child to the eldest member of the family is mostly taken into consideration by the family itself. Sadly, our society - and doubly sadly, this is being endorsed from the top of our Government downwards - has moved away from being one which supports the family both socially and financially to a society that more and more endorses the life of the individual. This is primarily illustrated by our unjust tax system. The Government has introduced a taxation system which penalises people for wanting to stay at home and take care of their children or indeed their elderly parents. The State should get value for its money, and the home carer offers the best value to the State.

According to the latest census, there are more than half a million people involved in full-time care in the home. Two-fifths of those, 200,000 people, are caring for elderly relatives or handicapped friends in the home. Despite this huge number, these people are - as far as our society is concerned - invisible. There is no mention of them in the GDP - they do not exist within the gross domestic product. There has been no CSO or ESRI poll to establish how much work these people do or how much money they are saving the State. All that is happening is that they are being penalised and told they do not exist. We have already heard from Ann McGowan how frustrating that is.

We cannot run with the hares and hunt with the hounds. We have to choose what we are going to do. If we want carers to stay in the home and take care of their children and their sick and elderly relatives, they must be supported not only financially, but socially too. I encourage our legislators, the people who represent ordinary persons, to act with integrity, and assert that the family is of importance, and that the people who stay at home to care for their children and elderly are of primary importance and must be supported throughout our society.

Professor Gabriel Kiely and Dr. Fionnuala Kennedy, eminent economists, suggest, despite the fact that there are no statistics, that one-third of the GDP is contributed by invisible carers and workers - "support without which the common good cannot be achieved", to quote Article 41(2) of the Constitution. As I said, existing governmental policies are having a very negative effect on the ability or, indeed, the desire of people to stay and care full time in the home.

How did we possibly think we could interfere with the basic cell of society, i.e. the family, and not in some way trigger off some sort of response to the whole body? We have a growing problem with carers, be they caring for small children, elderly parents or handicapped people of whatever age, being forced out of the home by economic circumstances, spiralling housing costs which have gone out of all control, and unjust tax systems which penalise rather than benefit people who stay at home.

Carers have to go back to work and the State has to pick up the tab. After extensive research we reckon that, on average, it costs approximately €180 daily at the cheapest to look after someone in institutional care. That is a conservative estimate. I would be very happy to work at home for half that money. My own case is an example. I was caring for my elderly mother. I was pregnant. I had a traumatised disc and needed a back operation. I was not able to lift my mother. I went to my local hospital, St. Colmcille's in Loughlinstown, where I asked the social workers if they could provide me with someone to come in a couple of times weekly to help me get my mum into the bath so that I could wash her and help care for her. It would have cost them about £90 weekly. They said no - but they could put my mother into care for three months, at an approximate cost of more than £450 weekly: I was looking for £90. I was not given that £90 and my mother was put into care. The State paid £7,560 to look after my mother. I would have done it for a fraction of that. She would have preferred that and so would I. There was no middle ground, just a choice of one or the other.

We currently have a case on our books where a young mother with a small child, who due to the death of her mother-in-law is looking after an intellectually impaired sister-in-law. The sister-in-law is in institutional care five days per week. She had been looked after at weekends and holidays by her mother prior to the latter's death. Her sister-in-law is happy to look after her but is awaiting the final implementation of tax individualisation. If it is fully implemented, she will no longer be able to afford to stay at home. She will not be able to look after her sister-in-law at weekends and holidays any longer and will have to work outside the home. Her sister-in-law will have to stay in care full-time at a cost of approximately €23,000 to the State.

What kind of supports need to be put in place to make it viable, respectful and altogether more comfortable for women to stay at home and take care of their children and the elderly? Why do I say women? I do so because the vast majority of carers are women. We have 500,000 women and 5,000 men currently full-time in the home - but it is as if they do not exist. These people need to be supported by a proper tax system, one which will support the Government's own equality agenda. I spent many months going around the country with the national plan for women, talking to the Government, telling them what is needed. Honestly, I say to the Deputies and Senators present that I might as well be talking to the wall. I do not know what is driving our politicians or making them insist that the family is no longer the centre of society, but that the individual is. We are going down an interesting but pointless cul-de-sac. We have to come out of it, because we are losing people, self-esteem, dignity and money - hand over fist.

We need adequate tax systems to reflect the dignity of the carer. Adequate respite care has been already referred to.

On monetary recognition of carers' work, a small percentage of what is already spent on institutional care could be siphoned off, as in my case, and given to help support people to stay at home and look after others at a fraction of the current cost. Training and education have already been dealt with. I found as I continued to care for my mother that, the more I got au fait with her situation, the more I began to understand how to deal with her, and the less frequently I needed to call in doctors or nurses or have her put in care. We both became confident, and she ended up with a happy life. My mother has since died.

I am well aware that there is a carer's benefit, but up to 13 September 2003 only 630 people were in receipt of it. There are 200,000 people looking after others in their homes. We have two main stipulations, or strong recommendations, which we wish to make to the committee regarding how we believe matters can be improved. The first is the issuing of caring vouchers. The committee may call them what it likes, but they would be blocks of income to be given to those in need of care. That would allow them to choose the type of caring that would best suit them at any given time. The vouchers could be exchanged for home help by their relatives, and that would be the income that could be given to those who are staying at home to care. They could be given to State carers for any kind of public care that is necessary, including respite care, physiotherapists coming to the house, eye examinations or anything else. That would take care of the money aspect.

However, even more important - and this is probably the heart of the matter - one needs to treat family home carers as people who are employed in a very worthwhile job rather than as spongers. I am frequently asked, as a person whom I consider as having been employed full-time for the past 22 years in the home, if I work. I tell those who pose that question that I had never worked a day in my life until I had a child. I thought that I had died and gone to hell. I love my children dearly, but it is all work, and we all know that. The members of the committee have families and homes. I have heard some of the members talk about their sisters, mothers, in-laws and out-laws. Members of the committee must take that humanity and flesh it out in legislation and the attitude that we have to carers in the home.

In conclusion, I would like to say that everyone wishes to be independent for as long as they possibly can. Having personally experienced it with my own parents, who have both now gone to God, I can say that they enjoyed the last years of their lives. It might have been painful for them physically, but mentally and emotionally I know that they were happy because they were in their own home. There are some people who do not want to be at home, and that is all right. However, the vast majority of people wish to stay strong and independent in their own home. The committee must support that, and if it does, it will win all the way. Caring costs, but we cost less.

Ms Lynch made her point very well. As someone who has battled for more women in the Dáil over many years, I feel that the women elected to it are sometimes afraid to stand up for women, but they should not be. Women, since the foundation of the State, have helped this country progress, have kept family life going and dealt with every crisis that has come. One never sees a man on the frontline in such issues; it is always women. In families, in particular, it amazes me that it is the women who are expected to look after the mother and father, but it is the son who inherits the property. That happens many times. The son is the golden boy, but the daughters are expected to look after the family. Ms Lynch was right in what she said.

I will give an example which comes to mind. Age Action Ireland has distributed a small brochure on two matters, one of which I will take up now. It concerns a woman whose mother had a stroke. She was getting €250 a week as a subvention and she had to put her mother into a home for several reasons. When she brought her home, she was still waiting for the €129 carer's allowance. She had waited for weeks since making the application.

I tabled several questions in the Dáil pointing out how much it costs to keep a person in a State home. I have been at it every year. The average was something in the region of £700 or £800. Now the figure is about €1,100, and we do not have enough places. However, some will not recognise the work of women such as Ms Lynch who is correct in stating that there seems to be an anti-family feeling. It is anti-family in the taxation system and when considering those who wish to care for others at home. There is no support there. Ms Lynch is correct in stating that we have failed as legislators to support the family. In some cases people think that, because we are not a liberal enough society, we should not support the family. The family is protected nicely in the Constitution, but that is all talk for we do not protect the family in legislation. We should support the family unit and particularly women.

I listen to women every day. I have one of my own and she works full-time for me and is never paid. The State gets great value, for it has two Deputies for the price of one. The women who stay at home should be recognised and rewarded. On the carer's voucher, does Ms Lynch mean it to be paid to the carer or the person in need of care, allowing him or her to make the decision?

Áine Uí Ghiollagáin

It would be paid to the person in need of care or the next of kin if he or she were unable to make the decision. That way the person could choose the balance of care. For example, if one week the home help wanted to go on holiday and the person wanted respite care, all they would have to do is give their vouchers to the respite carer. It would be a seamless way to pay everyone. It would make the amounts of money spent on care very clear very quickly. The Deputy would not have to table questions in the Dáil, and we would not have to call the Department of Health and Children or the health boards for our own research purposes. It would be very clear how much caring work was carried out each year.

It is important that we recognise the role of women in society. We do not do so, and we should. I wish to make that point. If we make one recommendation, it should be recognition for women that stay at home, and particularly those who look after the sick or care for someone. I hope that we will be making the recommendation that the means test be abolished and that we look at the person who needs the care rather than what people have.

Áine Uí Ghiollagáin

Our system of vouchers would obviate the need for a means test entirely, for one would be giving money relative to the amount of care required rather than the amount of money that the carer's partner makes.

The presentation was brilliant, and I appreciate it. I had a case recently where a young woman was living with her mother-in-law. Her husband was in a reasonable job, but not all that well paid. She received the carer's allowance for looking after her mother-in-law. Her husband died tragically, and she found herself on a contributory widow's pension but was not entitled to the carer's allowance. That woman could have worked in any job in the world and continued to receive her widow's pension, as it was contributory, yet she was not entitled to one penny of a carer's allowance for looking after her mother-in-law. She did it gladly, but the economic problems that it caused to that family of a widow and young children were enormous. As women dealing with such problem I would like to hear their comments on that issue.

Áine Uí Ghiollagáin

Once again, we feel that a system of vouchers would obviate many of those problems. One would not have to examine carers' means or anything other than how much the person was assessed for. One would need only to assess whether the person needs ten or 20 hours per week. The person would get the vouchers and decide, in conjunction with the next-of-kin, the public health nurse or whoever is helping them organise their own care, how that care is to be arranged. That would not have any impact on the other earnings of the carer. That is why we thought such a system would be easy to run and would solve many of the problems and anomalies which currently exist.

In conclusion, may I make one point?

I am heartened to hear Deputy Ring say he supports the views of women. Often when I turn on the radio I wonder am I the only one who is staying at home because there seems to be an illusion all women, in their desire to be equal, want to rush out and work anywhere except at home. I have never considered myself chained to the kitchen sink. Maybe women in other generations did, but it is not a phenomenon in my daughter's generation - she is in her twenties. Sadly the ladies who represent all women do not include us in their agenda. I am not saying that their agenda is not righteous and good, but there is another agenda and it is not being supported or promoted.

It may have nothing to do with the committee, but I would like to highlight that for a number of years our organisation, even though it is recognised internationally, both in EU and UN organisations, is forbidden - I use this word specifically - from taking part in the social partnership representing this 500,000 women. I ask the committee to take that on board and to consider that we do not have political clout because we stay at home to look after our children and our aged relatives.

We do not necessarily want, and I never wanted, to have political clout. I was never interested in anything to do with politics or any of this remit until I was told that I was an unemployed nobody and, as Shakespeare would say, "Hell hath no fury like a woman scorned".

Will Ms Uí Ghiollagáin give us any indication why so few have taken up the carer's benefit? I have my own views on it, that there is so much red tape and delay and if somebody takes ill suddenly, instead of the scheme applying quickly the carer finds himself or herself without any money for a period. However, I would like Áine Uí Ghiollagáin's views on that.

Áine Uí Ghiollagáin

I was quite surprised when I was doing the research for this presentation that the Department does not seem to have a clue but I had a look at it. For starters, the amount one can get is relatively low, €139.70. There are many people earning more than that. Such people will possibly be taking a break in their pension as well. They may not know how long they need to sustain the caring role. They may not think it is worth the trouble for that amount of money.

In answer to Deputy Crawford, honestly I do not. Many people do not know that there is a carer's benefit. Many people know that there is the carer's allowance, which goes out to approximately 10% of the carers - about 20,000 - in Ireland, but people are afraid of red tape. They may think that it may be a month or two only, and it is not really worth all the hassle and organisation. I would say that is part of it, not for us but for some people in employment for whom €139.70 a week is peanuts.

Áine Uí Ghiollagáin hit the nail on the head when she spoke about independence. What elderly people who are being cared for want is to maintain their independence as long as possible and we should be working towards ensuring that people can maintain their independence. My 86 year-old mother at home is the same. She is still able to give out to me - that is a good sign - but she has her independence. The day she loses her independence is the day she will not last much longer. Keeping that in mind is important.

I apologise to Áine Uí Ghiollagáin. I read her presentation earlier and was very impressed with it. On the tax individualisation issue, whether we like it or not that is a campaign she will have to continue because this Minister "aint for moving" on that issue. That is the reality.

In the context of caring vouchers or doing away with means testing for carer's allowance, if it came to a choice for which would Áine Uí Ghiollagáin opt?

I think we would opt for the vouchers because we feel they would involve less red tape. The amount of red tape is ridiculous. My father died a month ago tomorrow. We applied for subvention care for him last March and four days after his death I got a note asking for more information about the accounts he had 4,000 years ago in Ballydehob and the like. They do not have to bother with him anymore; he has gone on to better care. That is just an example of what happens.

A voucher system would certainly cut down on the red tape because you have vouchers in your hand and they are yours to dispose of in whatever way you want, and anything not used is ploughed back into the system.

Áine Uí Ghiollagáin

In addition, we would know how much care goes on in the State. Currently we do not know.

I thank the delegation for the presentation, and offer the committee's sympathy to, Caitríona, on her recent bereavement.

Thank you.

I hope the delegation recognises that this committee whose membership includes a good number of men but certainly includes a number of women and whose clerk is a woman, has recognised the contribution of women in the home by giving this group an opportunity to present their case.

I have no difficulty with women not being represented at this level because it illustrates the fact that so many women are very happy to take time out from careers outside the home to spend time in their home, and then to re-enter it as they choose. Every woman should have the choice to do that. Unfortunately, we do not at present.

I again thank the delegation for the presentation. We look forward to mulling over all the presentations over the coming weeks. As I said to previous delegations, we will obviously have a significant job in that we must distil a number of factors as we received almost 80 presentations. We selected six groups as a cross-sectional representation to make oral submissions and as far as we are concerned this group was broadly representative of various submissions received.

The voucher for the payment for care is an interesting new angle on it and I can see where the delegation is coming from. A voucher system is administratively simple and easy to identify and tag, as opposed to getting into the bureaucratic nightmare, which seems a major impediment and something of which we must take cognisance in the course of our further deliberations on this topic.

The next presentation is by the National Council on Ageing and Older People represented by Director, Mr. Bob Carroll, Ms Eibhlin Byrne, Ms Sinéad Quill and Mr. John Grant. We thank the delegates for attending the meeting of the committee today. We received a fairly comprehensive submission from this group. Indeed, we received a number of submissions. Will the delegates outline the main points of their submissions to the committee?

Mr. Bob Carroll

The National Council on Ageing and Older People is an advisory body to the Minister for Health and Children on all aspects of ageing and the welfare of older people. We feel honoured to be invited to make this presentation to the committee. We are represented by our chairperson, Councillor Eibhlin Byrne; Mr. John Grant, a member of the council and chief executive officer of the West of Ireland Alzheimer Foundation; and Sinéad Quill, who is our research officer.

We propose that Ms Quill might outline the main issues on full-time carers which have been identified by the council in its submission to the joint committee and which the members have received. They relate to the areas identified by the committee as ones on which it would welcome comment and include the long-term effects of full time caring on the physical and mental well-being of carers; current welfare policy and practice; statutory professional and voluntary support, and education and training opportunities for carers. Mr. Grant will speak from first hand experience of working with carers of those suffering from dementia, particularly Alzheimer's disease. Our chairperson, Councillor Byrne, will sum up and make the concluding remarks on behalf of the council.

The council bases its advice to the Minister and the Minister of State with responsibility for services for older people, Deputy Callely, on research. It has published a number of studies on carers. Some of the main findings of these studies are brought together in a fact-file which we included in the members' documentation.

The council's HeSSOP study, which sought the views of a representative sample of older people, found that, on average, 21% of the sample of older people received a high level of informal help from one or more people, that is, most of the day continuously, including at night. The vast majority of carers expressed a desire for direct payment for caring services. This would recognise both the value of the work performed by carers and allow them to purchase other forms of support should they need to do so.

There are two considerations. One is the income support which is certainly required by many carers and this has been made clear by those who made presentations previously. There is also the need for buying in services to help people to continue to live at home and save the State considerable amounts of money. We must think about the income support and also care and case management which was also discussed. Older people want to stay at home, and, therefore, they need carers in many instances. There is a need for appropriate care dependent on their individual needs and that must be co-ordinated. In other words, different services must come into play. There must be care and case management.

Half of the carers of people with Alzheimer's disease in one council study reported that they found caring completely overwhelming. The council was therefore pleased to note that a key element for ageing and older people listed in the health strategy, Quality and Fairness, was an action plan for dementia based on the recommendations of the council in its action plan for dementia published in 1999. Among other things, this called for the replacement of the carer's allowance by a non-means tested constant care allowance based on an assessment of care recipient needs and dependency made by the relevant case manager.

I will hand over to Ms Quill who will summarise the issues identified by council

Ms Sinéad Quill

Many of the previous presentations have covered the main points of this summary, but, given that the submission is based on the voices of older people and carers in our research, they are worth highlighting again. On the long-term effects of full-time caring on the physical and mental well-being of carers, a council study found that one-third of carers were at risk of psychiatric illness. In addition, almost a half of carers reported experiencing physical strain in their roles; three quarters found caring confining and felt socially isolated as a result, and almost half found their caring role upsetting because of the changing needs of the older people for whom they were caring. As Mr. Carroll said, of greater concern is that a large proportion of the carers said that they found caring completely overwhelming.

Research has also found that there are certain factors that influence the burden experienced by the carer of an older person. These factors enable us to identify carers who would be most at risk of ill-effect to the mental and physical well-being. First, the closeness of the relationship between the carer and the person being cared for affects burden levels with spouses suffering from poorer mental health than other family members. We know the majority of carers, especially of older people, are spouses.

Second, satisfaction with help from relatives had a positive correlation with the carer's morale and mental health. Third, the carer's perception of the degree of incapacity of their patient affects burden and stress levels. It was also found that problems of physical dependence and disturbed behaviour were associated with higher levels of stress in carers. This highlights that an older person, especially an older person with dementia for whom a spouse is caring and of whom there are about 22,000 living in the community are at especially high risk of physical and mental ill-health.

Council research has also highlighted that, when asked, carers wished to receive three main supports. First, the vast majority of carers expressed a desire for direct payment for caring services. While the council acknowledges that a key step in the recognition of the invaluable work of the carer was the introduction of carer's allowance, it is still concerned that the number of people in receipt of this benefit is small given the scale of caring in the community.

It has been identified in other reports that barriers to the take-up of the carer's allowance include an inability to claim it while claiming another State benefit. It has also been reported that the medical criteria for receipt of the allowance are overly stringent. Although the means testing criteria have been relaxed, they still exclude a sizeable number of people because the income of spouses is also assessed.

This has prompted many organisations, including the national council, to call for the provision of a constant care attendance allowance. We recommend that it should be paid regardless of means and should not be included in the means test for other social welfare benefits.

The second support most frequently sought by carers in Ireland is information and advice on health and social services, and on welfare entitlements. Carers also wish to know about the long-term prognosis and treatment options related to the medical condition of the person for whom they are caring. However, a mix of statutory and voluntary providers supply information on carers' entitlements, and it has been noted that this often fosters confusion. A recent council report noted that, where there was evidence of older people requiring certain services and they were asked the reason they did not receive them, a significant proportion stated that they did not know they existed.

The council commissioned research in 2002 to identify the health, social care and welfare services, information needs of older people and to recommend how best to address these needs. This was based on consultations with service providers and older people. An action plan for meeting their needs was developed and the council stated that the recommendations in this report be acted on in the short-term. In recognition that the caring role is one that many fall into, it would be beneficial to conduct a high level campaign specifically targeted at carers to alert them to the supports and entitlements available to them.

The third support most frequently sought by carers is relief care of various kinds. Council research based on the views of older people and carers suggested that carers could benefit from the provision of a range of respite options, including day places, short-term relief care, for example, through community residential services, night-sitting and, most importantly, domiciliary relief provided by home helps during the day. One of the benefits of domiciliary relief is especially evident in the case of older people with dementia who may find it more distressing to be removed outside the home for care rather than to be left in it.

There is also a need to ensure a complementary professional support service runs alongside the role of the carer. We have heard submissions refer to the role of the home help service and the public health nurse. The council wishes to reiterate the importance of creating and safeguarding in legislation the right of access to core services so that such services are an entitlement rather than available on a discretionary basis. The core services include home help, meals on wheels, day care and respite within and outside the home, paramedical services and sheltered housing.

On voluntary support, the council recognises the key role played by voluntary groups in the provision of care for disabled older people in day care, respite and residential services. The public policy issue now is how best to encourage new and flexible forms of service provision to meet the needs of carers at a local level. The voluntary sector has attempted to bridge the gap between minimal statutory service provision and growing service demand and should be supported accordingly.

O'Shea and Hughes found that another support frequently sought by carers was access to training. Proven benefits of this training include improving the quality of care provided to older people and assisting carers in coping with the stress of caring. The issue of training was comprehensively examined in the council's study in 1997, in which it was recognised that the current ad hoc position on the organisation, provision and accreditation of training in the care of older people needs to be addressed. The council recommended that guidelines on the content and operation of a training system for carers should be developed. In addition, the curriculum should include stress management, knowledge of ageing and personal care skills. The council also recommended that statutory funding be earmarked to enable participation in any national training initiative. The majority of carers are mature women. A national training initiative should be informed by the principles of adult education and place considerable emphasis on access.

I will hand over to John Grant, who will talk about his experience of working with carers for older people with dementia.

Mr. John Grant

Alzheimer's disease is a big problem. Over the past 13 years I have been involved with the West of Ireland Alzheimer's Foundation. We have two respite homes, one in Ballindine and one in Athenry, where we provide 11,500 day beds per year and we employ 155 people throughout the three counties of Galway, Mayo and Roscommon in caring for people with Alzheimer's in their homes and in our own homes.

If the members of the committee live to 80 years of age one in four of them will have Alzheimer's disease. It is going to be a big problem. Carers are continuously under stress every day from when they get up and they cannot even rest at night because they do not know if their loved one is wandering around the house. I often think they are like candidates at an election count. I ask members of the committee to imagine suffering the stress of being at a count every day of the year. It is all very well if one is topping the poll but if one is looking at someone slowly deteriorating in front of one's eyes it is a very sad matter.

Whole families, up to seven or eight people, can be involved in caring. A mother may be caring for her parent while the rest of the family becomes upset because she is giving too much time to one person and not enough to the others. The husband may start drinking, the wife will have to take tranquilisers and the young family may create trouble around the town. Carers are frightened because they can be caring for 15 or 20 years and they do not know what is ahead of them. They feel isolated and alone. They may also suffer a loss of income because such a person has to stay at home to provide the care. This is usually the daughter but things may be ten times worse if the carer is a daughter-in-law and the old person's family complains that she is not looking after their mother properly.

It is important that carers have a break. In our home in Athenry we have long-term and respite beds. We have a waiting list of 70 for long-term care although the home has been open for only a year and a few months. In a family in the Claddagh in Galway a lady is caring for her mother, who has Alzheimer's disease and is incontinent. The lady also has two handicapped children. The elderly lady pulls her incontinence pads off and she beats the handicapped children. We have decided to take her into our home in Athenry for the winter even though it will leave us with one respite bed less. There are very hard cases like this all over the country. We receive many requests for in-home help and for this we will pay out approximately €80,000 in the current year. This will be raised through fundraising. We are finding that respite care is the way to go.

What we are doing in the west of Ireland should be a model for the rest of the country. It is important that voluntary and statutory groups come together. Voluntary organisations, with the support of the statutory bodies, can do a better job. Volunteers are often more caring and do not have as many rules and regulations to adhere to.

A politician who is in this room at present said, after the last election, that he is not the curate any longer but the parish priest. However, the carers of Ireland have not even reached the seminary. It is important that the Government puts services for dementia in place. Our home in Athenry is full and has a waiting list of 70. What will things be like in the future when our population becomes older? Something must be done and it must be done now. The way forward is for voluntary and statutory organisations to work together.

Ms Eibhlin Byrne

I am conscious of another comment Mr. Carroll made earlier. He said speaking is like drilling. If you do not get to the point within three minutes you should stop boring.

Caring is taking place at home. That is where it should take place because that is where people want to be cared for. We are all in agreement that caring should take place at home. There is very little assessment of how much caring is being done. We have vague ideas and anecdotal evidence but we do not have statistics which tell us how many people are doing the caring. One is tempted to think that this is because it is mostly women who are doing the caring.

We are all aware of the absence of a support structure in the community. This needs to be built up rapidly if we are to continue to care for people. Given the strong changing social patterns in the country, in terms of smaller families and women going out to work, we are going to be faced with a very serious problem in ten or 15 years if we do not address this. In the national council we are engaged in projects, such as Healthy Ageing, to ensure that we all stay healthier as we grow older but we are going to have to look at ways of caring for older people apart from the traditional way in which it has always been done. Families are more isolated, there are nuclear families, there are not the extended families of years ago and women are not prepared to carry on alone as they have done in the past, and rightly so. We are all in agreement that something has to be done.

We are also in agreement that there is a huge personal cost to carers. There is a physical drain on their health, there is mental strain and there is an emotional strain on families. For people who are caring for dementia sufferers there are particular hardships.

In the national council we have advocated a number of supports for people who are caring. One is a constant care attendance allowance. People need to receive money for caring, not just for the sake of the money but also as recognition of the work they are doing and the service they are giving the State.

Information needs to be given to people but it needs to be given in a way that is accessible. It needs to be brought to them. They should not have to find the information. It is up to us to help the carer. It is not up to the carer to come looking to see what help he or she can get.

Core services should be provided through legislation. They should not be provided in a haphazard way when money is available. They should be provided for in legislation so that things cannot be changed in changing circumstances.

We have to have a new and innovative way of looking at the voluntary services. Throughout the country there are large voluntary groups offering services. We must think of new ways in which this can be done. For example, in Dublin alone there are 20 old people in one of the homeless hostels. They want to stay in the homeless shelter but that is no place to grow old. Even within the voluntary sector we need new flexible approaches.

People need to be trained to be carers. They need training in lifting, first aid and in caring for themselves. Today a number of people gave presentations and a number listened to those presentations. It seems to me we are all in agreement as to what has to be done. Within the Government there should be an ear to listen to this and if the will is there the changes can be made.

I compliment the four excellent speakers. I take this opportunity to mention that Mr. John Grant was voted Mayo Man of the Year and, deservedly so. He identified a serious need in this area. People are contacting me on a daily basis seeking Mr. Grant's telephone number and asking how they can get in contact with him with a view to his taking in their loved ones. I compliment him and his staff and the West of Ireland Alzheimer's Foundation who are worthy of support. Politicians receive daily requests from various groups seeking funding. We do not know where some of the money is going. We know how the allocation for dealing with Alzheimer's is being spent; we see it at first hand in Mayo and Galway. We are aware of the good work which Mr. Grant and his organisation do. It would be wrong if this committee did not highlight the excellent work being done by Mr. Grant and his organisation. I was not aware of the big number of staff he employs throughout the three counties. We need more people who will provide badly needed facilities. I know of a family whose loved one recently died at one of Mr. Grant's homes. They could not thank him enough for all he had done for them.

An issue about which we will speak all day today is that of full-time carers who feel there is no one available to help them. The West of Ireland Alzheimer's Foundation was there for these people and many others. I compliment Mr. Grant and hope he keeps up the good work.

My first questions relates to the national council on ageing and older people. At what age is a person defined as an older person? State agencies are discriminating against people of 55, 56 and 57 years of age in relation to grants for special housing aid for the elderly and so on. In my health board area a person who is not 65 years of age or older is not eligible for such a grant. That is wrong. It is my opinion that a person of 55, 56 or 57 years of age who is in need of a grant should receive one. I note that at a recent conference the Minister of State, Deputy Callely, spoke about means-testing in regard to the carer's allowance and said he would take up the matter and champion the cause. I hope he succeeds; he will have our full support. There must be recognition of those who stay at home to care for others. We have heard that said all day. Perhaps the delegation could elaborate on the issue of carer's allowances.

Mr. Carroll

We have already said that it is important that people know where they stand on supports to enable them stay at home. It cannot be ad hoc or arbitrary. There must be certain core services as of right. That requires legislation which will then determine at what age certain services are available to people. I would not like to comment beyond that. When we as a council speak about older people we are, by and large, referring to people over the age of 65 years.

My first question relates to the case manager. Mr. Carroll mentioned that the assessment for care recipient needs and so on would be made by a relevant case manager. Are such people in position? I am substituting for another member today but I have chaired a health board on four occasions and I am particularly interested and concerned about the issue of Alzheimer's. It is only a couple of years since we had geriatricians; psycho-geriatricians are relatively new. The position of geriatrics must be almost isolated from the rest of care of the elderly, even in the context of this grouping. The lack of facilities in this area is frightening. The southern health board is working on a marvellous programme called, Ageing with Confidence but there is nothing in place to deal with Alzheimer's. I would like more information about Mr. Grant's organisation. I feel the next screaming match will relate to the issue of lack of facilities for Alzheimer's. It is a separate issue because it defies the philosophy behind the rest which is taking care of the person at home. From my limited experience of the matter, I do not think it is possible to care for a person with Alzheimer's at home unless one has enormous back-up services. Perhaps the group could provide us with information on Alzheimer's at a later date.

Mr. Carroll

We have undertaken a study of caring case managers and can make that available to the committee. I will outline some of the conclusions we reached in that study and can attend again at a later date to discuss the issue, if the committee so wishes.

Ms Quill

The history of the project of care and case management began in the 1980s when there were problems with co-ordination of services. The council produced a study called, Swimming Against the Tide. One of the recommendations for people with dementia is that they have a case manager who would, in consultation with the carer of the older person and the older person himself-herself, compile a needs assessment and draw up a care plan. The case manager, on the basis of the care plan, acts as the key contact between the older person, the carer and the services. That means the services are brought to the older person and carer rather than a frail and vulnerable older person having to find such services themselves.

Care and case management began in England in an effort to save costs because long-term care costs were spiralling out of control. Care and case management has to be applied in a very particular way. We approach it from the point of view that it is for older people who are vulnerable and on the margins between home and residential care. Care management is not for everybody. It is there to assist people who are on the brink of institutional care. The council has joined, in recent months, with the chief executive officer group and brought a submission to the Department of Health and Children. We are currently running primary care pilot projects. It has been agreed that care and case management will be an integral part of at least two of the projects. There are already moves in that direction.

Will there be a link, say, with a liaison nurse to prevent a person being sent back to an empty home? It appears as though the main job is to get people out of the hospital. Deputy Ring was worried about putting another person into the system. Will the traditional district team act as managers?

Ms Quill

The idea is that it will fit into existing resources. The beauty of care and case management is that it is supposed to make more intensive use of existing resources. That is what appealed to the Department of Health and Children. One takes the services on the ground and co-ordinates them. We all know we are operating from a fragmented system where nobody knows what the other person is doing. One may have a physiotherapist who does not know if an OT or chiropodist is available in their area. The key worker contacts all the different parts of the equation and brings them together to support the needs of the older person. It is about the care brought to the older person. That can be done quite easily through sitting down together to talk about it.

Mr. Grant

The appointment of a geriatrician in Mayo has made a huge difference to our respite home. She has made herself available to us in dealing with difficult cases and that has made a colossal difference. In-home support was also mentioned. I appreciate the opportunity to give my thoughts on Alzheimer's. We started the in-home support service, putting a carer into another person's home. That has worked well. We have spent approximately €70,000 or €80,000 on that scheme so far this year. After a while we found that the person with a carer needed a little bit more and that is the reason we built the respite home. We found that this kept people out of long stay institutions for a considerable time. People definitely need the respite care facility along with the in-home support.

I welcome the representatives of the National Council on Ageing & Older People. As I come from the same neck of the woods in Mayo as Mr. Grant, I have first hand knowledge of the service provided by his organisation. A member of my extended family received respite care this summer for a few weeks giving us a time to breathe and to get organised. Any perfectly healthy person may get this disease which causes tremendous hardship to families trying to care for those with it. No price can be put on the work being done by Mr. Grant and his organisation. I have been fortunate in that I was able to bring the Taoiseach and the Minister for Finance to visit his project to see what he is doing at first hand. Something will have to be done in the near future to finance and provide the services necessary for this project.

I too want to compliment Mr. Grant on the great work he is doing in Ballina, Athenry and the west. He is providing a great service. I agree with him that the best service is provided by voluntary and statutory groups working together. There are still people around who are prepared to volunteer time. Semi-retired people seem to be freer than anybody to volunteer time. I support home-base subvention. Is there a good reason why it was never introduced? Everyone should have the choice of staying at home or going to a nursing home.

Mr. Carroll

My understanding is that a report on the matter has been prepared and submitted to the Department of Health and Children. The Department is setting up a committee to look at the issue of subvention. The main recommendation is that it should be available for people going into institutional care and for people in the community. I imagine it will come into force at some stage soon.

I thank the group for its report. I am glad Deputy Carty was able to bring the Taoiseach and the Minister for Finance to visit the project in Mayo. We will judge how useful that visit has been when we see the Estimates and budget. How many years has the organisation been active and is it happy with the response it gets as a result of the valuable reports it puts forward?

It is interesting when voluntary funding was asked for in regard to home help that €80,000 became available very quickly. We had a case recently of a school for the handicapped in Cootehill putting forward an 18-month project for which it had to raise €100,000. The funding was raised in three months. There is goodwill amongst ordinary folk towards those who need help but it is sometimes difficult to understand how something such as the home help facility becomes the first casualty when there are cutbacks in the health system. As I mentioned earlier, I know of cases of cutbacks in carer's allowance because it was found that someone was working on the farm while also caring on a full-time basis for a loved one. As a body established by the State, is the national council satisfied that its input bears fruit at the end of the day?

Mr. Carroll

I would have to say "yes" in certain regards but "no" in certain key respects. I come back to a point already made that older people want to stay at home. However, certain key services must be available if people with certain levels of disability are to be able to stay at home rather than have to go into long-stay care. We call those core services. They will not be available and will be cut back as long as there is no legislation to enable people to have those services. In that respect, the answer is "no".

Ms Byrne

Essentially we are an advisory body and much of our work is research based. We have a very good team of researchers at the national council. It was interesting to hear in various submissions today facts and figures gathered by the national council being quoted. I see our role as one of enabling others to make their arguments. If people do not have the statistics to back up their argument they will not be able to make it. That is probably where our greatest strength lies rather than in our advocacy.

I fully support that but I wanted to hear the council's reaction. Most of us here have had personal experience of this issue. I nursed my own mother at home until she was 93 years of age. Twenty years earlier she nursed her husband, my father, and allowed herself to become seriously ill doing so. Although she was a highly qualified nurse she did not realise how ill she was becoming. Every one of us has a personal experience of this issue.

There has been an Alzheimers unit in St. Mary's Hospital in Castleblaney since 1996 where an empty ward was reopened for the purpose. The service this unit gives to our community is fantastic. People with Alzheimers are different from other patients and are difficult to manage. At least if someone is old and has a sore leg one knows where they are the next hour or next day but one never knows with someone with Alzheimers. I appreciate the work being done by Mr. Grant.

I thank the representatives of the National Council on Ageing and Older People for their worthwhile presentation to us. I thank them for their patience and for bringing some new aspects to light. We hope to give due consideration to what they have said when preparing our report which we hope to have ready to present to Government in November, hopefully in time for the budget.

We have in the gallery Ms Miriam Ryan and Ms Niamh Fitzgerald who have sat patiently through all the submissions today. We appreciate their attendance. Last but by no means least we will have a presentation from representatives from the Southern Health Board area dealing with services for carers. They will have a late flight home. I welcome Ms Mary Rose Day, Ms Hilary Scanlan and Ms Noreen White and thank them for their patience. One group must be last and we wanted to allow the maximum time for presentations.

Ms Hilary Scanlan

It is a great pleasure to attend the meeting representing the Southern Health Board and speak about the programmes we have developed for carers. The three of us will make short presentations. The reality is that listening to the presentations earlier we are very sure that the policy and the carer support unit we have developed within the Southern Health Board in the past two or three years provides a unique example of integrated, cost-effective responses to some of the issues the individual carers and the other groups highlighted earlier. Obviously, some of the themes are recurrent.

We are always mindful that there are tensions within caring. People wish to do it, but without doubt there is a huge burden involved in caring. Eamon O'Shea who has done some research on the needs of carers and on health services in Ireland recently wrote that without families, the community care system for older people would have collapsed long ago. Families provide extremely high levels of care even for relatively low dependent older people. On the margin between community care and residential care, family care has the same significance as nursing care within public and private institutions with approximately 13,000 high or maximum dependency older people living at home. Families incur significant opportunity costs and health costs in caring for older people but in general the commitment to caring is still strong here. We wish to support that commitment while at the same time supporting the health and social gain of carers.

To put things in context, we have heard of the carers' charter that was developed in the 1990s. The last decade of the last millennium was a time when awareness around carers and their needs and issues came to the fore and programmes started to be developed. Within the Southern Health Board we were fortunate that we were in a position to highlight the role of carers both in the context of carers of older people and carers being older themselves at the same time that we were developing our Ageing With Confidence strategy and plan. Due to funding that was ring-fenced for carers, we were able to develop the carers' unit, about which we want to talk today.

We developed the carers' unit in around 2000. Quickly we became aware of the research around carers' needs. We developed a strategic plan and got straight into action in 2000. Our approach has been to work with all key stakeholders, with carers themselves being the primary stakeholders, as we recognise that carers are or should be the centre of activity. For too long the carer was a shadow person on the side. The older person or person with special needs was the focus of attention. However, our aim is to put carers at the centre of health board activity. We worked with all stakeholders and we appointed staff. We have been very fortunate with Mary Rose Day, our development manager who has rolled out the programme, which we will outline later. We have a steering group with which Noreen White and I are involved and immediately we started to create links. For the information of the committee, the mission statement of the carers development unit is:

We recognise that the carer is central to the health board's strategic development and delivery of services. The health and social gain of carers is the responsibility of all disciplines within the health board.

This has been one of the challenges for us. It is up to us to promote that it is up to all health board staff, regardless of the sector they are in, to value and recognise the role of carers. I will ask Mary Rose Day to go through the individual initiatives we have undertaken.

Ms Mary Rose Day

I am delighted to be present to share some of our experiences and the initiatives we have developed in the Southern Health Board. The areas under which we have developed services to support carers are: information and awareness; training; workshops; group support; respite; and innovations. I will now give a brief overview of how this has been done.

Under information and awareness, the first challenge was with the term "carer". We made a definition when we set up the steering group because there is a lack of awareness. People do not like it when we talk about carers. They think it means the person in receipt of carer's allowance; they think it means care assistant. They do not realise it is they who are caring for a family member at home. We developed the definition and tried to raise awareness around them.

Every one of the previous groups mentioned information. It is a gateway to inclusion. One of the first things we did was to develop a newsletter, the Carer’s Voice. We did this with the support of the Department of Social and Family Affairs, southern region. We publish 10,000 newsletters with each issue. This information goes to 6,000 carers in receipt of carer’s allowance or domiciliary care allowance, carers on the register, all voluntary groups that are registered, public health nurses and GP surgeries. It is made up of information on different health board services, key contact numbers, and entitlements from the Department of Social and Family Affairs and from the community welfare officer services. The key point is that there is a contact within the newsletter for these people. In addition it advertises what supports, training, etc. are coming up for carers and raises awareness around health issues, perhaps occupational therapy services or elder abuse, which is contained in this issue, along with general information.

We have also a telephone support line, which has become inter-agency. When a carer comes with a problem it might not be just a health board problem but be multi-faceted. As members will have seen today, it could relate to entitlements. We work with the Department of Social and Family Affairs in the southern region and if the part of the call relates to the Department we get permission from the carer to pass on their phone number and they will be contacted within 48 hours, which is our target, or as soon as possible to answer the query. This partnership between the two agencies has worked extremely well for us. The newsletter would not work unless the carer's story was included. For many carers, no matter what supports and services we have, they may never leave their homes to come to see some of the things we are developing. This reduces social isolation and informs them without leaving their homes.

We have also worked on information days. In 2002 we had five information days which attracted an attendance of 420 carers. We would always have information on entitlements and may have information on physiotherapy and aids and appliances. It varies depending on what carers are feeding back to us at any time. At all events we organise we hand out an evaluation sheet asking people to tell us the areas on which they need more information.

Recently we have been involved in the development of an information pack and again the carers were consulted on what needed to be included. There are about eight leaflets covering a range of issues, including health board services, eating well, caring for the carer, loss in caring, fire safety, promoting safety independence. We also had a community outreach programme until August 2002. That project worked extremely well, but had to be suspended. During the course of that project, aid reached out to 500 families in Kerry providing information on entitlements in the area of health and personal social services.

During 2002, we ran 11 different training courses for our family carers including: home carers; support for carers of people with dementia; assertive communication and self esteem; therapeutic hand care and nutrition. We also provided training for Alzheimer's home support staff and voluntary groups amounting to 268 hours.

In the area of workshops, from the needs analysis that we carried out with carers, several key areas were identified as follows: stress management; entitlements; grief and loss; bladder and bowel problems and complementary therapies. These may have been carried out as once-off two-hour events rather than a full course. We also held workshops on dance and crafts, as carers do not always want to hear about caring. They want to get out and want a social aspect to it also.

The other initiative was group support. In the first year it was a lot about providing training, workshops, information days, but then carers wanted to keep in contact with each other and groups formed. That is how the need was identified. Perhaps some of these groups have been slow in developing on the ground, but they have been empowered and are taking the lead with regard to present requirements. We also continue our support to existing groups and grant aid to voluntary groups.

Respite has been widely discussed today. One issue is that of putting our mission statement and carers at the centre of services. We developed a definition from the carers' unit with the support of a steering group. We defined respite as a service in which the carer is given a break from the responsibility of supervising or providing services to the person being cared for. People tend to think of respite as respite for the person being cared for, rather than the carers themselves. We have provided a respite break in Ballybunion for carers. This started as a pilot project in November 2001. Last year, we provided respite for 76 carers in the tower centre in Ballybunion in partnership with the St. Vincent de Paul Society, on the basis of a six-day break. This year to date, we have supported the attendance of 63 carers there.

On the basis of our ongoing evaluation, a six day period did not suit the needs of all carers as they could not leave the person for whom they were caring for that length of time. Accordingly, we are providing two further weekend breaks later this year. The programme has been very successful, but it would have been greatly enhanced if we had been able to provide matching in-patient respite for the cared-for person, although that is sometimes done. Perhaps not all of those concerned are older people in continuous care at home and may have no contact with services or access to respite.

We also provide funding to voluntary groups such as the Carers Association, Baile Mhuire, the west Cork carers' support group and the Skibbereen geriatrics group. There are different models of respite, such as the opening of a day care centre on Saturdays, support service respite grant and time-out sessions. Our community hospitals also provide respite - we have 102 beds - but they are unable to meet all the existing needs.

On innovative projects, we have been involved in the development of a nutrition video and training manual, in the production of which carers were involved. We have piloted a training pack and we hope to do some further work on that during the coming year. We undertook pilot training for carers, with a mental health theme, earlier this year over eight weeks. That involved behavioural management and communication, which are hugely difficult areas for carers and on which they have lacked information to support them in their caring activities.

We recently launched the booklet, "Carers in Focus", a copy of which is included in the information pack circulated to members. It deals with the importance of supports and networks for carers and was developed in partnership with the Cork City Partnership, the Department of Social and Family Affairs, RAPID and the Southern Health Board. It was based on the work of the Ballyphehane carers' support group, including the importance of contact numbers for carers, key issues in setting up carers' support groups, tips on caring for another person and much more information. This booklet will support other groups and let carers see the importance of support networks and avoiding isolation.

Our quarterly newsletter has already been mentioned, as has the carers' register. During the year, UCC obtained funding from the Combat Poverty Agency to look into the needs of young carers, who have not been mentioned today. I refer to children under the age of 18, who are providing substantial levels of care for parents or grandparents, including dealing with incontinence problems and possibly losing time from school in dealing with problems such as drug addiction. The UCC project will involve research on the quality of life and the effect on the young people's education. This is currently in progress. There is a huge gap in information on young carers in the south of Ireland.

In conclusion, I have put in the carer's compass. It is the work done by the King's Fund in 1999, which developed a compass to look at the carers' needs, divided into eight areas of the compass. It is clear from the comments at this meeting that the services we have developed in the Southern Health Board cover the key areas of the carer's compass, namely financial security, a voice, full information, recognition for the carer and cared-for person, quality of life, time off, emotional support, training and support to care.

My colleagues have given a brief overview of services in the Southern Health Board and the developments which we have had, focusing mainly on building partnerships with carers, with the disciplines within the health board and with the voluntary agencies. Our recommendations on what we wish to see rolled out nationally are based on the experience of our work to date. An effective mechanism needs to be put in place to recognise, identify and support carers. Clarity is needed in the definition of "carer". One of the difficulties is that people providing care would not necessarily describe themselves as carers. Consequently, they miss out on opportunities of acquiring allowances or services due to lack of awareness. As well as clarity of definition, we need awareness across all agencies and people working with carers.

As has been stated, carers should have a right to individual needs assessment, rather than focusing solely on the cared-for person. We need additional financial supports for special categories of carers. Some carers are looking after a number of family members. While there is some provision for situations involving two cared-for persons, we have found situations where a person is caring for three or even five family members. Additional support is needed for such cases.

The matter of adequate income has been mentioned. Increased access is required to a range of respite and home support packages, as well as accessible information and accredited training. As well as catering for carers, accredited training should also include provision for further progression by carers when their current caring role has finished.

In essence, our recommendations underline the need for a national strategy. We believe our experience in the Southern Health Board, in terms of a carers' development unit with a dedicated budget across all sectors, would be a useful model for all health boards. In the context of a dedicated budget, we have focused our services particularly on the care of older people. However, it is difficult to focus solely on carers of older people, having regard to the fact that there are also carers of children with special needs who also attend many of our information and training sessions. There should also be a dedicated budget for such carers, with maximum co-ordination between all sectors.

The issue of a statutory entitlement to community care services needs to be pinned down. We need to place carers as the central focus of all our services. We need to develop and research models of best practice and promote the principles of partnership to which we have referred, involving the carer, the cared-for person, the agencies and the voluntary sector. I hope our presentation today will hit home and that we will see some of our recommendations implemented in the near future. I thank the committee for inviting us to this meeting.

I compliment the health board personnel on their presentation. In the final analysis, all of us are working together, including voluntary groups and statutory bodies.

We have listened to many recommendations in respect of what is needed. The witnesses need more funding to carry out their jobs. That is the major issue. The witnesses are at the coalface and they are the people who get the stick when there are cut backs in services and home help. Everybody wants more, but to provide more services we need more money. That is probably what the witnesses are saying. What services they can provide are provided well, but they need the support, resources and money of the State. They certainly need expertise to be provided.

The recommendations the witnesses have made to us are no different to those made by the voluntary organisations. I am glad to see that they are working hand-in-hand because it is important that those in need of care are looked after. That is our common goal. The presentation was excellent. I was expecting it to be different from that of the voluntary organisations, but many of the policies outlined are similar. To that I say, "well done". I hope the State recognises the job being done and that any deficiencies can be worked on to provide people with the care they need.

I was interested to hear references to younger people to whom we, perhaps, do not look and who may be losing out on educational time. It is something I have never thought about. When that was said, I was reminded of an individual to whom I recently spoke who had spent 20 years looking after his elderly mother. He had been on carer's allowance since it was introduced and it was only recently that he was able to make himself available for work again. Having spent so long away from it, he found it very difficult to re-enter the workplace and he felt the whole system was against him. He had to leave the country and travel to England as he could not cope. That is sad and it is something the delegates' health agency should look at. When a person who has been looked after for a long time dies, there should be some form of caring for the carer.

Ms Day

We are doing that for people who have finished caring. We see a need in that respect. We have found that some of these people come back to manage our support groups as they still need to be involved. They certainly need support.

I am glad to hear that.

I was very impressed with the presentation. The Southern Health Board, and all involved with it, must be complimented for what has been outlined to us.

It is easy to say that a particular service is being provided and the witnesses have outlined the training which has been put in place. What percentage of carers within the Southern Health Board region has availed of the training service to enhance, for example, their basic nursing skills? What arrangements are in place to transport care recipients to day care hospitals or hospitals generally? Is there a specific need in that region? Is the delegation in a position to tell the joint committee that the Southern Health Board can meet the basic needs of all applicants? What is the situation in the context of disabled persons grants which link into that indirectly? What basic aids are provided in respect of chores such as washing? Are hoists provided? How well advanced is the health board in that regard? In the context of the policy decision the joint committee is endeavouring to put together, what priority is being given to the provision of such aids?

Ms Scanlan

Two questions were raised concerning transportation and aids and appliances. The Southern Health Board is the largest of the ten health boards with the huge geographic area of Cork and Kerry to cover. We make subsidised transport available, according to individual assessments or appointments. We do not have a non-ambulance patient transport system unfortunately; in fact, very few health boards have. It is certainly an issue. We have been fortunate that most of the day care facilities have their own in-house accessible transport. Certainly, it is a huge issue. The transport infrastructure in Cork and Kerry is not what anybody would desire and it certainly constitutes a barrier to people accessing services. We are getting there in terms of individualised services such as those provided by day care centres which have their own transport. There is also a subsidy which people can apply for to meet individual transport needs.

A multi-disciplinary committee sifts through all applications for aids and appliances in each of the five community care areas within the Southern Health Board. Resources are tight and there are budgetary constraints. We have community stores in each community care area in which are stored the basic care equipment to meet day-to-day needs. While that is fairly readily accessible, there is a monthly budgetary assessment mechanism for the larger items such as hi-lo beds. Perhaps those items are standard now. I am not greatly informed on the technical equipment, but basic items are fairly readily accessible. There may be problems with once off items. One of the huge problems in terms of aids and appliances is that we are short on the paramedical staff and occupational therapists needed to carry out assessments of individual needs.

What about training?

Ms Day

I work in the carers' unit and I undertake quite a lot of the training myself. We have reached out to about 500 carers, but we also support voluntary groups which provide training. The West Cork Carers Support Group provides training in west Cork; the Carers Association provides it in Cork and Kerry and numerous other small support groups which have taken three years to develop are in receipt of grants under section 65 to support training. I do not have the overall figures on that but, perhaps, 1,000 people are involved. The word "training" is probably a misnomer in the sense that the course is not recognised. One of our recommendations is that the award would be at level 1 or 2 which would mean the carer would have a recognised qualification if they wished to re-enter the work force when their caring role comes to an end.

I wish to compliment the Southern Health Board for the recognition it has given to carers. Recognition means a great deal as the witnesses have probably discovered. I wish them the best of luck with their work. Was there a need to make a special funding allocation for the work or was it possible to undertake it using the community care budget?

Ms Day

No, there is an allocated budget for carers of approximately €500,000, 65% of which goes to grant-aid voluntary groups. The remaining 35% is managed through the carers' unit to fund the developments the committee has heard about today.

I join with the other committee members in complimenting the three witnesses. I am slightly biased as I was chairman of the Southern Health Board during 1997 and 1998. The reason I asked earlier about Mr. Grant's work in the area of Alzheimer's disease is that I spent my 27 years with the Southern Health Board in the community care area. I did that as I felt I had some expertise. I was chairman of the community council etc. I live in Togher which is the next parish to Ballindine, the parish referred to. We should look at best practice and learn from it, which is a philosophy I adhered to throughout Cork and Kerry.

Transport was mentioned. The best innovation I saw - I believe it was started by the wife of the famous Mick O'Connell - was transport out of Valencia Island. There are places like Portmagee which one just would not find in north Kerry, in spite of the fact that we complain about transport in Dublin and Cork. The people in question ran a mini-bus and were the first in the country to get a grant which was the equivalent of the free-transport allowance. They got a substitute for it by negotiating. This has since been copied.

The work by the health board did not happen by accident. The amount of work done by the Southern Health Board employees was phenomenal in respect of the Ageing with Confidence programme. Each village and town in Cork and Kerry which have a population of just over 500,000 was facilitated in terms of its having some member of staff go to it to discuss the matter with the people being cared for and the elderly, not just the statutory bodies. It required a huge amount of commitment - I do not know about the cost - but the staff did much of the work in their own time. It had to be done in their own time because it was not until after 5 p.m. that people were available. Some of them were very cynical.

Regarding best practice, the volunteers will respond to support from people like ourselves and the statutory bodies. The group to which I refer arose from the Older Women's Network. Chrissie O'Callaghan and neighbours of mine became involved and are nationally recognised. Voluntary groups can be successful anywhere if they are given some assistance. They do not need very much and if they get some support and increase their morale they can work themselves. They can do anything although one might not think they are carers when one meets them.

On Alzheimer's disease, our original intention was to make St. Stephen's a centre for dementia-Alzheimer's disease. This does not seem to be happening and there are interminable professional rows over it. Alzheimer's disease is described as a family's disease and not as a patient's disease, for obvious reasons. Can a patient with Alzheimer's disease really be looked after at home or do we need a special unit for such people? This is a critical question for the future.

Ms Day

Some people with Alzheimer's disease develop behavioural problems. They are no longer the people they were before they contracted the disease. Caring depends on family relationships as well and how many people are in the home. On coping skills, I have seen carers take patients home whom I did not believe could be coped with but they managed very well with the help of support networks. Some people can be cared for at home if they get over the wandering stage. This is the biggest issue and it is the biggest issue for the health board as well because our community hospitals do not have locked up facilities. We cannot manage people who are walking in and out.

I am not answering the Deputy's question in some ways; it depends on the assessment of the individual with the disease. Some people can be cared for at home but people do need information. It is only now that the public is receiving information on behavioural management and communication skills. These are significant issues and people will need a lot of worthwhile information. Carers tell me their patients repeat the same questions all the time. They are fighting and getting angry. One carer said to me last week, "I need the help, not the cared-for person, because I am actually shouting at them." She went into the kitchen on Sunday and discovered her mother had put on the dinner and burned every single saucepan but did not remember what to do.

Again, I compliment the delegates.

I compliment the group on its presentation. It mentioned that 500 carers have completed the course. What is the number of carers and roughly how many are in any group? Has the budget for home help and home carers been cut in the delegation's health board region? If so, how has it coped with it?

How useful does the delegation find the day care centres, which can help those who need care to keep in touch and give some relief to the carers? In one of my local towns, Cootehill, a purpose-built day care centre has been sitting empty for 18 months because it has not been allocated sufficient funds to allow it open. It has a brand new kitchen and services. The participants used to be able to use the courthouse. They were turfed out of that after the new centre was built, but now they do not have any accommodation.

Ms Day

I will address the issue of training. I said that we probably have 1,000 people who have gone through training, be it through the voluntary sector or through the health board. We probably have 20,000 carers nationally, but a carer is defined as anybody providing care. This could be achieved by phone calls or by providing more substantial services. In my health board region, there are probably 1,600 people providing care because the main age for becoming a carer is from 43 to 64.

Not all people will want to go on a course. There are different levels of dependency, as we mentioned today. I am sure we have much more training to carry out. As there are no exact facts and figures on the number of carers, it is very hard to generalise. The funding is for older people but some members of the groups that come to us would be caring for children with special needs. Older people would be included but the needs in this respect are quite different. Caring for a child with ADHD is very different to caring for an older person.

Ms Scanlan

The home help budget has been affected, as in all other health board areas. There is great pressure on the budget at present. We have instigated new mechanisms to assess and review home help centres. The reality is that much of the development moneys that came in the past 12 months have been channelled into priority areas: the nursing home subvention and the home help budget. This is because we recognise the importance of home help in the care of all people in the care groups. Without doubt, they have taken a hit.

On day care facilities, we have been very fortunate to have been prioritised. Much of today's discussion centres on the fact that we have an ambition throughout all our health strategies to shift from institutional care to community care. Unfortunately, the budget has not shifted. It is not that the needs of the acute sector are not massive as well, but we have to strike a balance. This is where the development of day care has been prioritised but, unfortunately, a line has been drawn in the sand in terms of the NDP budget, etc. However, we have been very fortunate to develop lots of day care in partnership with the community and voluntary sectors. If we could have a shift in the budgets it would be desirable.

I pay tribute to the three ladies on their very comprehensive report. I am very involved in care for the aged in my community. This has been a very special educational evening for me. I will bring back a volume of educational information to different sectors. We have a club, the Silver Thread Club, which caters for middle aged and elderly people - people in the evening of their lives - with different complaints. The information I have gleaned at this meeting will be very helpful to my group. Therefore, I am very grateful to the delegation and to the others that made presentations this evening.

Senator Walsh has eloquently summed up what I wanted to say. The delegation was the last to make a presentation and I thank it for its forbearance and patience while we were dealing with all the others.

This presentation represents a major boost. I wonder if that which the delegation brought to our attention pertains in the other health board areas. A number of recommendations were set out very specifically and we are interested in ascertaining how they might apply in our own health board areas. The delegation has given us food for thought in that respect. The presentation was made in a succinct and forceful fashion. I thank the delegation for raising the points with us in a lucid manner. We wish the group continued success in the work it has undertaken. It is certainly pioneering in nature and I hope that it is expanded. We will certainly take cognisance of some of the recommendations that have been made.

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