I welcome the representatives of the Carers Association, Mr. Enda Egan and Mr. Frank Goodwin, who will give a presentation on behalf of that organisation. I also welcome two journalism students from DCU, Ms Martina Quinn and Ms Aisling Kennedy, who are in the public gallery. They are welcome to observe the workings of the committee and I hope they gain something from it. I remind all Members and visitors to switch off their mobile phones, if they have not already done so. While the comments of Members are protected by parliamentary privilege, those of visitors are not. I call Mr. Egan.
Carers Association: Presentation.
Mr. Enda Egan
On my behalf and that of Frank Goodwin and the Carers Association, I thank the Chairman for inviting us to come before the committee.
The association has been in existence since 1987. One of its key functions has been to lobby Government and put the issue of family carers on the national agenda. We have had a reasonable degree of success in doing so. We are glad of any opportunity to try to get our message across. Our presentation will be split into two parts. First, Frank Goodwin, who is one of the founder members of the association and currently its treasurer, will outline the organisation's history and the role of the family carer. In addition, he will discuss the issues and policies which affect carers within the home and describe what they have to go through on a daily basis. I will then speak about the policies and issues that are of relevance from a legislative point of view.
Mr. Frank Goodwin
I will not go into a long-winded spiel about our organisation's history. The organisation was founded in 1987 and, while certain things have improved for carers, we believe there has been little change in recent years.
The health boards were set up under the Health Act 1970, so, while our organisation has only been active since 1987, community care, as defined in legislation, has been a fact for 32 years. Carers within the home are the backbone of community care for certain vulnerable groups within society. It is Government policy that people should be able to stay in their own homes. We are concerned about people who, whether through birth, accident or extreme frailty in old age develop levels of dependency whereby they cannot remain at home unless somebody assists them, rather than those who are elderly but in relatively good health.
There is no dispute between the Government agencies and ourselves on the estimated figure of some 50,000 carers. By full-time care we mean that which is provided 24 hours a day, seven days a week. I refer to cases where a presence is required even though a carer may not be actively doing something for the person for whom they are caring. Many carers around the country are in that situation. We are not drawing an analogy between the work of a carer and a person in a full-time job in the sense that, in employment terms, the latter is generally understood to work a 40-hour week. In addition to the 50,000 to whom I refer, there are at least a further 70,000 carers who work for up to 40 hours per week.
It is important to mention that women predominantly do caring work, while some 10% of carers are men. The gender issue may be part of the reason this matter has not been addressed in a more serious way over the past 30 years. Another difficulty in gaining recognition is that this care is provided within the home. It is only when a carer can no longer continue to fulfil his or her role due to ill-health or death and the dependant has to enter into the care of the State, that the State begins to be aware of the need for care. This has led to the provision of nursing home subventions in recognition that people have to be employed to look after those in need of care and address their special or dietary needs.
Carers within the home are not recognised as employees who do a job. Nobody denies that they are doing a job, but it is not recognised as meriting any of the benefits - namely, wages or good working conditions - of normal employment. If a carer is sick, they have to make their own arrangements for alternative care or continue to care during their illness. We find it very worrying that about 30% of carers of the elderly within the home are themselves elderly people. They are brothers, sisters, husbands or wives who are elderly. We often come across situations where when the burden of care is lifted off carers they suddenly recognise the burden they have been carrying and their bodies react by bringing to the fore any aspect of their health which they have been neglecting. We know of a number of carers who developed serious illnesses once the burden of care was lifted, some of them have died within about 12 months simply because they have been working in a very pressurised situation. The side effects of such pressure are well known in other situations.
Apart from the carers' entitlements to recompense for their work there is the matter of the cost of providing care for a dependant. This can be special diet provision, medication or adaptations about the home. These costs are not addressed in any constructive way to facilitate the role the carer is playing. We see the carer as a primary deliverer of care services within the community. The primary carer is not the public health nurse, the home help or the provider of meals on wheels; it is the carer within the home. The dependent person could not stay within his or her home if the carer was not there. The other services I have mentioned do not impinge on the life of most full-time carers, even at this stage. Some full-time carers are getting the benefit of public health nurses, meals on wheels or the use of a day centre during certain hours of the day, but for the vast majority of carers those services are still not a reality.
Most full-time carers do not qualify for the carer's allowance. Carer's allowance is a small token step above what an unemployed person receives. Carers would be better off signing on the dole and not having to work than getting the carer's allowance and working the hours they do. This is not because someone says they are not full-time carers; this can be easily and objectively assessed. They do not qualify because of the means test. If a carer's spouse is employed outside the home the carer is deemed to have 50% of the spouse's net income and does not qualify for carer's allowance.
Many carers have not opted to be carers. They are carers because of the hand life has dealt them. Some carers are parents of severely disabled children and some are, for example, the spouses or daughters of elderly people who have suffered a stroke or some disabling illness. If there is no one else to carry out this role the carer must decide whether to take it on or allow the relative to go into full-time care. This factor causes distress to many carers and this is particularly the case with an adult, perhaps a daughter, who is caring for an elderly person. Such care often includes intimate personal care, which is a crisis situation both for the cared for person and the person providing care. A person who was caring for her elderly mother once said to me, "Look, I can do anything from the waist up". She felt like vomiting several times a day when she had to toilet her mother, had felt that way for several years and was going to feel that way for the rest of her mother's life. She had never adjusted to her role and it would never have been a career choice for her. While many carers are in this very stressful situation they are quite willing to carry out this role to the best of their abilities if they are given reasonable support.
This might be a useful time to hand over to Enda Egan to elaborate on this aspect of the matter.
Mr. Egan
Frank has given an overview of what a family carer does on a daily basis. I will go through the supports which are available for family carers from the State. The main financial support is the carer's allowance. The other is carer's benefit, and I will come to that in a moment.
Carer's allowance is not seen by the State as a payment for the work done by the family carer in the home. It is seen as a supplementary payment to the carer or to the family. This is the main issue which family carers feel needs to be addressed by the Government. At present more than 19,000 family carers are in receipt of carer's allowance and about 17,000 of those receive the full allowance of €129.60. That includes the increase from the last budget. Approximately 2,500 receive somewhere between €5 and €129.
An applicant for carer's allowance must fill in an application form, which some carers call a melodeon because it expands to several pages. Our organisation has 17 carers' resource centres throughout the country and one of our main functions is to fill in carer's allowance application forms on behalf of family carers. If one were not used to filling in forms this one would frighten the life out of one. It is very detailed, asks a great number of questions and puts people off. I am convinced there are many family carers who have never applied for the carer's allowance because of the application form.
There are two main aspects to the application form. It must be signed by a doctor to say that one is carrying out caring duties and that the person being cared for requires full-time care. The main aspect which prevents most carers from getting the allowance is the means test. At the moment the income disregard stands at €420 per week. This also takes into account the additions made in the last budget.
Page 7 of our submission shows an outline of the aspects of the carer's allowance which need to be changed to bring it in line with what family carers need. I will read some points from page 7:
Following three years of consultation the Commission on the Status of People with a Disability published its report in 1996. Key recommendations for carers included: No. 62, there should be a nationwide assessment procedure based on the need, and an independent appeals system put in place for such an assessment; No. 64, all carers caring for people who require full-time care and attention should be eligible for this payment; No. 70, the means test should be related to the carer's means only and not include those of a spouse or partner; and No. 71, the carer's allowance should not be taxable.
Seven years later those are still the main items of concern to family carers.
The carer's allowance should be increased to that of the rate for a foster carer. A foster carer looking after a child under 12 years of age receives approximately €281.50. If the child is over 12 years of age the amount is increased to over €300. From a carers' point of view, many of the carers consider that the role they are carrying out is equal to that of a foster carer. If a family carer is caring for more than one person that carer will receive a carer's allowance for 1.5 persons instead of two. The big anomaly in this system is that the respite grant, introduced by the last Government, which was a good initiative, is currently being paid to two persons being cared for. In other words, if one is looking after two people one will get the respite grant twice but if one is looking after two people one will get the carer's allowance for 1.5 persons. That is an anomaly in the system that needs to be addressed. It all comes down to the means test which we and the carers consider should be abolished. The Commission on the Status of People with Disability was of the view that means testing the whole family was not adequate and that only the carer should be means tested, if the means test is to remain in place.
Carer's benefit is the other payment which is available to family carers. It is similar to the carer's allowance but it was introduced for people caring on a temporary basis. In other words, it may suit a person whose parent or somebody belonging to them has got a terminal illness and the term of care is unlikely to be very extensive. The person can apply for carer's benefit and, under legislation, their job has to be held open for them for a period of 15 months. When the 15 months has expired and if the care continues, the carer's benefit does not. In other words they have to apply for carer's allowance. The Carers Association considers this provision should be amended to allow carer's benefit to be paid or that the person will at least be entitled to the full amount of carer's allowance.
The difference between the carer's benefit and the carer's allowance is that the secondary benefits which come with the carer's allowance, for example TV licence, a certain number of free ESB units, travel pass and free telephone rental, do not come with carer's benefit. That is also an anomaly in the system.
The respite grant, introduced by the last Government, is viewed as a good initiative by carers and the association. It is a flexible payment which allows the family carer to buy in care while they go away on holidays. The carer's respite grant is paid around 1 June.
Family carers are not entitled to medical cards. The Carers Association consider - Mr. Goodwin touched on this earlier - that every carer should be entitled to a medial card because when one looks at family carers as we do, and deal with them on a daily basis, their health suffers. An interesting study would be to compare the health of a family carer with an ordinary worker. Certainly family carers suffer from back problems and stress. Along with other health professionals they should be given at least a medical card and free health check-ups.
Another issue about which carers feel strongly is the nursing homes subvention. There have been some moves afoot as stated in the health strategy and in the programme for Government, whereby the subvention to nursing homes would also apply to family carers. In other words, if I am a family carer and decide I want to put my parents, or whoever I am caring for, into a nursing home I can apply for a subvention. The subvention would be paid by the State to the nursing home on my behalf and, therefore, my payment to the nursing home would not be as great as it might otherwise be. Family carers are of the view that if they were eligible for that payment, as a payment in their own home, they would naturally want to keep their parents at home, as well as the parents wanting to stay at home, because care in the home is the choice of both the family carer and the cared for person, particularly when the cared for person is elderly. We know that is contained in the programme for Government and in the health strategy but there is no timeframe; in other words, there is no time limit as to when this will be done. We recommend strongly that it be brought forward and that a pilot project be set up immediately as part of the health strategy. This project would not necessitate a great deal of work or research and it could be piloted. It is a practical, workable arrangement and could be put in place relatively quickly.
It is funny that the carer's allowance is taxable for a family couple. If, for example, a husband is working and his wife is in receipt of carer's allowance, her carer's allowance is added to his income and is taxed. The Department of Social and Family Affairs does not look at this as a payment for the work being done, it is only an income supplement, while the Revenue Commissioners look on it as a payment and tax it. That is another anomaly in the system. It is unfair that some family carers are getting a reduced amount of carer's allowance and yet it ends up being taxed. While we could go into a huge amount of detail on all the issues to which we have referred we are open to questions on the finer details.
With 90% of all community care being provided by family carers 24 hours per day, seven days per week, carers form a large part of our national work force but do not possess any of the rights enjoyed by other workers such as leave entitlement and hours of work. Carers have been ignored in the Working Time Act 1998 which enshrines these rights to other workers. The Working Time Act 1998 states that the foregone rules and regulations do not apply to junior doctors and family carers.
Family carers save the State approximately €2 million per annum by caring for frail older people, adults and children with special needs at home. This is on the basis that the average cost of nursing homes is €400-€450 per week and if the cared for person was not cared for by the family carer this is the cumulative amount it would probably cost the State to provide that level of care. Data available from the Department of Health and Children state that, depending on the level of care required, per week care could cost as much as €1,300. In other words if a case that requires a high level of care, and we have a number of carers who are caring literally 24 hours around the clock, with a heavy amount of medication and equipment was transferred into institutional care, the Department reckons it would cost in the order of €1,300 per week.
There are at least 50,000 carers in Ireland and 70,000 part-time carers. It is difficult to state the number of carers. The Department of Agriculture and Food can tell us the number of sheep and cattle in the country and where they are situated but we are not in a position to say how many family carers are out there. Two years ago the Western Health Board did research on family carers and estimated there were approximately 20,000 in that region. There are ten health boards, so if one multiplies that figure by ten, it would mean there are 200,000 carers. A question was posed in last year's census which will probably identify the number of family carers.
The carer's allowance is seen as an income supplement and not as a payment for care delivered. As Frank Goodwin stated, that is the main issue at present. Almost 18,000 carers are in receipt of the full allowance and approximately 2,200 carers are in receipt of the part-time allowance.
The recommendations the organisation will make are that the means test be immediately removed from the carer's allowance to allow the allowance to be paid to all full-time carers as a minimum and that the carer's allowance be increased to the rate received by foster carers - €280 per week - although it exceeds that in some cases. In addition, we will also recommend that the carer's allowance be paid for each person being cared for in order to remove the anomaly of a maximum of one and a half carer's allowances being paid even where two or three people are being cared for.
Urgent developments are needed to bring about a resolution to the issue facing family carers. We need to introduce a carer's payment which will be based on the work and needs of the family carer. Not only should this be a payment, but it should come with a package of care for each carer and the person being cared for. The latter should be enshrined in law and, obviously, an amendment to the Constitution would be required to facilitate this. The Government should proceed to abolish the carer's allowance system and replace it with a carer's payment based on a fairer system of nationwide assessment procedures and on the needs of the family carer and the person being cared for. This assessment would entitle the carer to a financial payment and a package of care and health services.
A legal right to independent assessment of the needs of the carer and the cared for person - with openness and transparency and a right to appeal to an independent ombudsman - is required. It is the view of family carers - this has been included in our pre-budget submissions in recent years - that if we want a complete system which will look after family carers properly, this is probably the route we need to take. It can be done quite easily by putting in place a pilot project. It could be rolled out in five or six areas throughout the country thus taking into account the demographic issues with which one is faced in considering the position vis-à-vis urban and rural areas.
The nursing home subvention should be available to family carers who would qualify for it but who would prefer to have the choice to keep the person at home. If the subvention was available to family carers, it would be far better than sending people to nursing homes, some of which are private enterprises. I thank the committee for its time and I would be delighted to answer any questions.
I thank Frank Goodwin and Enda Egan and I compliment them on their submission. I congratulate them on the wonderful work they have done for carers throughout the country. I wish they would move further west because there is a need for their association in that part of the country due to the fact that people feel isolated. As politicians, we believe we have failed those to whom I refer in terms of the way we have represented them over the years. There is a big demand for these services as people feel they have no voice.
What effect have the recent cutbacks in FÁS schemes had on our guests' organisation? What was said earlier about means testing is quite correct. The Government and the Department will have to seek another way to assess the care that is needed. As our guests indicated, 17,500 people receive the full carer's allowance while approximately 2,000 receive the part-time allowance. There many be 200,000 carers, but people do not bother to apply for the carer's allowance because of the means test, the fact that the application form is so difficult to complete and the need to supply birth and marriage certificates, etc. I do not know why it is necessary to request a person's maiden name. A doctor's certificate and the name of the carer should be sufficient. Given that the form is so complex, the Department is often obliged to telephone a person and seek further information.
Reference was made to the respite grant, which is very unfair. If a carer looks after somebody up to 11 months, or even a week, before they die, they do not get the grant. I agree with our guests' proposal that if a carer looks after somebody for up to 11 months of the year, they should get the grant even if the person being cared for dies. It would be a small recognition for the work they have done. Respite care is necessary because people need a break. When people come into my constituency office, I know if they are looking after an elderly person. There are different types of carers, including those who look after people 24 hours a day, seven days a week, 52 weeks of the year in cases where there is no family help or support. These people are drawn and weary and there is nothing to which they can look forward. Something must be done to give them assistance, whether this takes the form of someone taking over their duties for a period or otherwise. Hospitals or the health boards must give these individuals a break. They should be guaranteed a two or three week holiday each year.
In many instances, a full-time carer looking after somebody 24 hours a day, seven day a week gets sick and there is then chaos within the family and in the health service because there is nowhere to put the person being cared for. Carers do not get recognition for the work they do. It sometimes takes years for such recognition to be forthcoming. Something must be done for those who are getting nothing as a result of the means test. They must be given some recognition for the work they do.
What was said about the subvention and foster care was correct and I believe the State must provide funding in that regard. Why does the State not recognise the work of people who are saving it a fortune? If somebody is cared for at home, they are saving the State a great deal of money because it does not need to pay staff and hospital beds are not taken up. Consultants complain that some people are in hospital who should not be there because there is nowhere for them to go for post-treatment care. There are people at home in need of and receiving full-time care, but those caring for them do not get any recognition from the State. The time has come for an overall assessment.
A point was made about the farmers, the Department of Agriculture and Food and the location of sheep. The Department had a major difficulty in Dundalk a few years ago. It thought it knew where sheep were located, but when it went to look for them, it had difficulty locating them.
There should be an assessment of how many people are being cared for by others on a private basis. The Chairman, like every member of this committee, is committed to this. Those looking after sick people need recognition. The time has come for real political decisions to be taken to support these people at home and to recognise the work they do. They also need follow-up support in the form of respite care, which would give them the opportunity to take a break, get away and become rejuvenated. We take these people for granted, which is wrong.
I compliment our guests' organisation and I hope it spreads its wings across the country because many people who need support are crying out for help. Sometimes the only support they need is somebody who will talk to them, reassure them and tell them there is help available and that there are others in the same position. I hope our guests' organisation keeps up the good work. We, as politicians and legislators, must recognise the work people are doing and the care they are giving these people.
Enda Egan summed up the situation well when he said there are many people who are prepared to look after somebody from the chest up, but that there are many who find it difficult to deal with people who are sick and in need of full-time care. The least we can do is give these individuals some recognition.
Does Mr. Egan think the FÁS scheme has helped his organisation and what more can be done to give people assistance in the home so they can have a break from caring for someone on a 24 hour basis?
Mr. Egan
Three years ago we had approximately 90 community employment participants. Currently we have 70, therefore, we have lost approximately 20 over three years. Even though recent Government policy has been to cut back, FÁS officials have been very helpful to us. These people have used every opportunity to keep available for us as many places as possible. While we have lost approximately 20 people over three years, the situation could have been much worse. This is probably a result of the good relationship we have had with FÁS, because other voluntary organisations have been hit much harder. FÁS funds us to the tune of €600,000 or €700,000 a year. The money goes directly into home respite, whereby a FÁS participant goes into the home to give a break to the full-time family carer. A community employment supervisor, together with one or two members of staff, would operate carers' resource centres. They would deal with issues such as carer's allowance, including health and social welfare rights, entitlements and so on. This is an invaluable service. If we as an organisation lost the service, we would be talking about approximately 30,000 or 40,000 hours of home respite service being lost to family carers. That is a huge service which is being provided by the FÁS community employment projects.
On the second question, if one asked family carers what their priorities would be, the first would be financial support - this is not always a priority for some carers - and the second would be a break. Every carer wants some kind of break or help in the home. These are the two main requirements. If the Department made funding available, this would be one of the main beneficiaries. In the last year or two, health boards have increased funding in this area. There is a focus on family carers in recent years in terms of giving carers a break or a practical service in the home.
I welcome the delegation and compliment the Carers Association on the great work it does.
I have a couple of questions. If one looks at the centres throughout Ireland on the map, why does practically all of the west coast have neither a carers' outreach centre or a carers' resource centre? The same applies to the Border counties. The Western Health Board indicated at a meeting recently that it had a 30% over-capacity of beds for people in the elderly care area, which seems an extraordinary figure. Is this because people have availed of the tax breaks to set up nursing homes? Has that type of information been available to the association? The board also stated that if all the applications currently with the health board and Department were to be implemented, there would be an over-capacity of 80% in rest homes and nursing homes in three years' time. This is extraordinary. It is not my experience on the ground because I receive a reasonable number of representations on behalf of people waiting to get into either Sacred Heart hospitals or rest homes.
In regard to FÁS, it is funded by the Government. The Government has always indicated that it wishes to give priority to essential services, which includes help for carers.
I compliment the organisation on its training schemes in particular. This is very often an issue which is not spoken about. People do not plan to end up as carers and they have no opportunity to get information, training and so on. The Carers Association does excellent work in this area because information and training is of vital importance. Back-up respite care is also very important. Carers are in great danger of suffering from burn-out or breakdown, particularly those who must give 24 hour care. Perhaps this aspect could be expanded further so that there could be some structure to respite care. I am not sure how structured it is currently. There is a reasonable attempt to address this issue in our Sacred Heart hospitals, but what type of back-up is in place? Perhaps someone will explain the back-up for respite care in the home, because these people are to some extent forgotten about in the whole respite area.
Has the Carers Association made submissions in regard to insurance? Two health insurance companies cover insurance for acute hospitals in this country. However, outside of this country there is a whole range of insurance cover for home care, some towards nursing, but much of it towards just a carer with some training. This aspect would be dealt with through a company or association. That type of insurance is not available in this country. No insurance company has come forward with any such proposals. I referred to this aspect on two occasions in the Seanad when dealing with the Finance Bill. While there is a response in regard to capital allowances for the provision of spaces, there seems to be no breaks for people who want to go into this area. Has the Carers Association given any thought to this issue or made submissions on it?
Finally, I am very impressed with the proposal for home subvention. It is the wish of people to be cared for as far as possible in their home. We do not respond positively to that aspect in this country. Property which is willed or transferred in the last five years is taken into consideration. The fact that people must dig into their savings is totally inappropriate. I recently came across a lady who lived in a mobile home all her life and who had saved €14,000. These savings have now been reduced to €4,500 and she has still not received subvention. This is very stressful for her and her family. She had to go into a nursing home recently. Perhaps the Carers Association would have a view on that issue in relation to a cut-off point or the big obstacles to home subventions. Have there been discussions with Department officials in this regard? Would Mr. Egan consider it more appropriate if nursing home subventions were dealt with centrally, rather than having different interpretations within and among health boards, which happens at present? It is often the case that one can receive a subvention in certain circumstances in one health board area, but not in another. There does not seem to be great uniformity. Does the Carers Association feel it would be more appropriately dealt with by a central authority?
Mr. Egan
I was asked about the location of my organisation's centres. The Carers Association was founded in Dublin and it seems to be moving across the country slowly but surely. It is represented to a small extent in the Western Health Board and North-Eastern Health Board areas and we hope to extend its presence in those regions in the coming years. We cannot give feedback on the suggestion that there is a 20% surplus on beds in the Western Health Board area. Our national freefone care line, which takes calls from all over the country, provides a good indication of what is happening throughout the country and our feedback from it does not seem to be in line with the figure of 20% which has been cited. We have specific statistics for waiting lists and I believe Galway has the longest waiting list for home respite care, which indicates that many people are being cared for at home in that area. That is the only comment I can possibly make.
Our services are ring-fenced at the moment and the word from FÁS is that there will be no further cutbacks. When I speak to carers, one of the things they say they need is training. Nurses and doctors are very well-trained but, as my colleague Mr. Goodwin stated earlier, carers end up having to care without having planned it. It is probably the only career choice we will all be faced with, as either our parents will grow old and need care, or a child with a disability will be born into our families, or someone we know may suffer from a terminal illness. Almost everybody will have to decide at some point whether they want to stay at home to care for their parents, whether they will leave the task to a brother or sister, or whether the person in question will be placed in institutional care. The carer needs adequate training if the person being cared for is kept in the home.
Health boards have not looked at this area adequately in the past, although many of them are beginning to take the issue on board and are supporting the Carers Association's training courses. The training of family carers is absolutely paramount. A nurse in a hospital would not be allowed to lift a patient without assistance from a colleague, but family carers have to perform many care duties alone. We need to train them as best we can. One of the Carers Association's greatest successes in recent years has been its training courses and it intends to develop this area further in the coming years. Our training courses have been well supported by Comhairle, the vocational education committees and the health boards.
I do not doubt that there is a massive amount of inconsistency between health boards in relation to many issues, particularly nursing home subventions. The biggest problem we find is that rules are interpreted inconsistently. I recently encountered a family carer who was not entitled to subvention in a particular health board area, but was entitled to a subvention when he or she happened to move a few miles to another health board area. The income of the person in question had not changed and their savings may have decreased. There are many such examples. I am not sure how this matter should be approached, but the system could not get any worse if it was centralised.
Does the Carers Association have a view on people taking out insurance?
Mr. Goodwin
I do not have much information on the matter, although I am aware that a number of private sector companies have entered the home nursing and care market - I have seen some in the Dublin area. Such companies would have to have insurance for staff entering people's homes as part of the delivery of their services. I am not aware of any insurance packages that help families to cover the cost of caring for members of the family.
I welcome the speakers from the Carers Association and I commend their work on behalf of carers, including the training of such people. I represent the counties of Cavan and Monaghan, where there are many independent resource centres, and I would like to see the association becoming more involved in the Border region. While the centres I have mentioned are doing a good job, they could benefit from support mechanisms. There may be less work to be done in my constituency office if the association was involved in my area, as there are many forms to be filled out, as Deputy Ring mentioned earlier.
I find it hard to accept Mr. Egan's comment that the Government's priority is to keep people in their own homes, as an unbelievable number of people has been removed from the carer and home help structures in recent weeks. I accept that the changes may not have affected full-time carers. Before I left Monaghan today, I spoke to a person who told me that the number of hours made available by the North-Eastern Health Board for care purposes is to be cut by about 88,000. Some 27,000 hours will be lost in counties Monaghan and Cavan alone. It is totally unacceptable that people at the lowest end of the spectrum have to bear the brunt of the health board cuts. Given that there is a budget of €9.2 billion, the Government should find savings in areas other than home help and home care. It is unacceptable in the context of the Government's supposed priority of keeping people in their homes. I know the association is not here to discuss this matter, but it is relevant to its work.
Some things have changed for the better in recent years, since I became a Member of the Oireachtas, but there is still a long way to go. The Carers Association mentioned nursing home subvention for people at home and I hope a commitment will be made by the Government in that respect. When one receives letters on a daily basis saying that people are being placed on a subvention waiting list for nursing homes, and that their farm is being assessed but they should not take for granted that they are entitled to any funding to stay in a nursing home in the meantime, one despairs of how such a case will be dealt with.
I support all the Carers Association's efforts. A problem that was not mentioned today, but about which I feel very sore, is that of a carer who becomes a widow. I am talking about a woman who was a carer when she was married. When her husband dies she suddenly finds that she has to live without her husband's income or carer's income. She is put solely on a widow's pension. This is an area that would not be major in terms of numbers but it is a very traumatic situation for those caught in it. I have come across a number of similar cases where a wife was looking after her husband's parents and was entitled to a carer's allowance. When the husband passed away suddenly, through an accident or otherwise - two cases that come to mind involve an accident and cancer respectively - the wife was not able to continue on carer's allowance but had to switch to the widow's pension. A widow is not even entitled to the respite grant.
The respite grant is another area that must be looked at carefully. For example, somebody may become a carer on carer's allowance in March or April and the person being cared for might die a short time later. If the death is after the middle of April, that person can get the respite allowance, as it is six weeks before 5 June. However, there are cases where carers have been looking after a patient for years, and are in receipt of the carer's allowance. I knew of a case where the person died six weeks and one day before 5 June and the carer was refused. Although I was given a promise in this committee room by the Minister that it could not happen and would be looked at, that person has not yet got one penny. There are anomalies. It is strange that a person should care for somebody for years on a carer's allowance but be cut off because he or she does not meet the exact date, while somebody else might be in receipt of the allowance for only a few weeks.
I support the work of the delegation and hope this committee can encourage the Ministers for Social and Family Affairs and Finance to be more responsive to this area.
Mr. Goodwin
We recognise that any Government's policy may differ substantially from the delivery of that policy. The committee is aware of the situation in hospitals where in order to try to give a more efficient service to more people, it is harder to get into hospital. Patients have to justify their cases more to get in and they are turned around pretty fast and moved out.
There are repercussions from that in a caring situation. For example, a full-time carer might meet some hitch where the relative being cared for needs to go into hospital. It is now harder to get people into hospital which means the carer must carry on with an even greater level of dependency and anxiety. Equally, the relative is shipped home very quickly so the carer has to play a nursing home role as well as a caring role. That is an added burden on the carer within the home.
Practically every Government over recent years has brought in some level of improvement for carers and they clearly take pride in the improvements they have brought in. We have always tried to be positive about each development but, at the same time, we have tried to get successive Governments to recognise that if we continue at the same level of improvements for carers as in the past 13 years, it will take something like 30 to 40 years before all full-time carers are getting an adequate service. That does not include part-time carers in any way. Unless something serious is done in the near future, the progress will be no more than a drip feed.
It is great for the carers who benefit and are living in areas where there is respite care. I knew an elderly woman looking after her elderly brother who was in a wheelchair. She had an arrangement to get him into St. Mary's in the Phoenix Park for two weeks every year. On top of that, she would also have day breaks. That system worked very well for her but that is not available for 90% plus of carers throughout the country.
I thank Mr. Goodwin and Mr. Egan for their submission. I compliment them and their predecessors on the way they have kept the needs of carers on the political agenda. If it was not for their efforts and those of similar organisations in highlighting the issues and protesting - I am not necessarily recommending that protest action be taken - the meagre improvements to date would not have been secured.
On one of the main requirements with regard to the carer's allowance, the Labour Party prior to the general election committed to doing away with the means test and my party will continue to deal with that issue. I do not intend to go through the submission as similar submissions have been made to the committee. There is a general commitment from members on all sides of this committee to raising the profile of this issue and gaining meaningful recognition for the role of carers.
What sort of feedback have Mr. Goodwin and Mr. Egan received with regard to the basic facilities available to carers in rural areas? Do many people lack basic facilities such as toilets, bathrooms and indoor heating, and do the outreach centres have any information on that? How responsive are the health boards in meeting basic requirements necessary for people in their day-to-day struggles to help those they are caring for? Lifts and other aids might be required and I would like to know what support is received from the health boards.
Mr. Egan
Many of our centres are in rural counties and many of our outreach centres go into the heart of rural Ireland. It is not unique to find situations where there is not even running water, although it is not a common problem. In my experience of running the carers' resource centre in Tullamore over a three year period, I have come across perhaps 12 cases where there might not be basic toilet facilities, water or electricity. That is not the norm but there have been instances. That has lessened over the past two years but there were situations where those with mental conditions could end up like that.
There are many inconsistencies in the health boards. Depending on whether carers in various health boards are looking after children or adults with special needs or older people, there can be big differences in the volume, type and quality of service. I could point to a parent with a child with special needs the health board areas in which he or she would be better off living. There is no doubt that some health boards supply better services to carers and people who are cared for, depending on the category under which the person requiring care falls.
In recent years, health boards have been more open to dealing with the Carers Association and with the issue of care in general. It is only in the past two or three years that certain health boards have started to appoint carers' co-ordinators and realise that the issues of carers need to be addressed. Some health boards have not yet reached that stage. One could argue whether the approach involving carers' co-ordinators is the best in terms of supplying services to carers. In certain health boards it has been successful, while in others the jury is still out.
I compliment the Carers Association on its presentation and the great work it is doing. I know what it is like to care for an old person at home. It is hard work for anybody involved. Carers need recognition and the best way of doing this is by giving them some payment. Some years ago the income disregard for the carer's allowance was only £100, but now, at least, it amounts to €420. I hope this will increase substantially to cater further for carers.
The home-based subvention, of which I am a great promoter, was mentioned. This gives a person the choice to either enter a nursing home or remain at home. At present, those in need of care sometimes have to go into nursing homes because there is no payment at home. Choice would create competition for nursing homes because when the nursing home subvention is increased, nursing home costs also increase. Competition would be good.
The disabled person's grant and the housing aid for the elderly scheme run by the health boards have been beneficial in recent years and they have improved facilities for people staying at home. The work of the social services is not often mentioned. Those involved do Trojan work, but, of course, these services are not available in every area. Those involved feed and bathe people and offer chiropody services, which help to keep many more people at home. The providers of such services should be looked after better by way of grant aid because they often have to go around begging and selling goods in order to raise sufficient funds.
It is unfair that there is no disregard for a woman on the widow's pension and that she has to opt for one form of welfare. The provision for those on widow's pension who are providing care should be increased because provision is made for those who are earning.
I compliment the delegates on their presentation. I presume the service of the Carers Association also covers people with learning disabilities. Government policy was mentioned earlier and it is laudable and reassuring. People in their 70s will be reassured by it as well.
Many homes now have two income earners. If both are out of the house at the critical times when people need meals it can be a cause for concern. I have no doubt that families would prefer to care for their elderly parents or relatives in their homes, just as they would like to be cared for at home themselves. In most cases it would involve one earner giving up a job, seeking a job-sharing arrangement or employing somebody. This costs money and bills and mortgages have to be paid. The Government should examine the alternatives. If people do not want to or cannot provide care in their homes the alternative is quite expensive. The full allowance for a carer of €129.60 is a pittance compared to €450 for subvention or the cost of an acute hospital bed. We read all sorts of horror stories in this regard. I recently read of a case where somebody was kept in a bed for 270 days in an acute hospital because there was nowhere to which he could be discharged. That is not acceptable.
Carer's benefit and the concept of temporary leave were mentioned. This is an excellent scheme, but not enough people are availing of it. I do not know if this is because they do not know about it, but I would like to see it advertised more. Carers, although they are unqualified, could take many people out of the care stream of the health services if offered some help and guidance from a public health nurse, for example, who could pay occasional visits.
Respite is badly needed and it can offer both the carer and the person being cared for a great break. Is there evidence that people who access respite care say, "Instead of picking you up in a week, I will pick you up when I get back"? There is evidence that people are so desperate that, once they get rid of somebody, they feel this is the only way of keeping a bed and that there is no other way of gaining access to a service, be it a care assessment, home help, etc.
Some people question why they should even bother looking for help. They might fear red tape or filling out forms and all they receive are negative responses. Many people's initial requests for help are met with a negative tone by health boards. We talk about inconsistencies, but that is the one consistency I have discovered in many of the health boards.
Mr. Egan referred to FÁS and the ring-fencing of positions. Recently, I was greatly reassured that FÁS had ring-fenced its positions. However, when individuals were sought to fill them there were none available. I refer to the learning disability services in north Monaghan. The two people on the FÁS scheme in question were providing a fantastic service. FÁS, in conjunction with the health board, invested a great deal of money in their training. The terms of both individuals on the scheme ended together and there is nobody to take on the positions. They were providing an invaluable day service. If that service is withdrawn, the only alternative for the people receiving it is to enter full-time institutional care. If the Carers Association has any influence on FÁS I would like to see it attempt to relax those rigid rules.
Mr Egan
There were two points to which I would like to respond. Deputy Callanan spoke of the extra costs associated with caring. We did not mention earlier that there are considerable additional costs, such as those relating to higher heating bills, special diets and transport. There are many extra costs associated with caring for someone and I know the programme for Government states that this will be examined. There is no timeframe, unfortunately, detailing when that will happen. There has to be another payment to cover the cost of caring for someone.
We did not dwell on the matter of one social welfare payment, to which Deputy Connolly referred. A pensioner caring for her husband is not entitled to the carer's allowance because one is only entitled to one State payment. That anomaly must be examined and certain political parties were making allowances in their election manifestos in that regard. Single parents also fall into this category but many pensioners are also carers and they get none of the secondary benefits which would help them, such as the respite grant.
Mr. Goodwin
Social services are a tremendous support to people. Some of the social services, as has been said, are supplemented through fundraising and insurance has also become a big issue for them. In addition, the health and safety standards, which are very important, have the effect of making local community centre kitchens totally obsolete. I work with Dublin City Council and we have 50 or 60 specially built accommodation blocks for senior citizens. Each has a community room, which is like a domestic kitchen, where local volunteers prepare meals and deliver them through a meals on wheels service. Most of those kitchens must now be either modernised or closed; the modernisation standards are costly, so a small local voluntary body trying to meet them may run into serious financial problems.
Regarding respite, we have found that the issue was more when there was a crisis and the relative of a person who was providing full-time care had to go to hospital. Sometimes there were accusations that the carer was dumping the relative because when it was time for discharge the carer said they could not take the person back. That was sometimes seen as the carer exploiting the situation to dump a relative. That may happen in an infinitesimally small number of cases but we have found the reality to be that the carer has been living on his or her nerves in trying to provide care and has been stretched in every direction. When the relative goes into hospital and the carer gets a breather and a chance to stand back, they recognise they are in an impossible situation. They are mesmerised by the fact that they have been able to carry on for so long but they have to confront the reality that they cannot continue providing care for their relatives at home. They therefore refuse to take the relative home and force the services to look after the best interests of the person needing care and to provide that care. If they could provide the care and support services in the home the carer would not have an issue but carers have been left more or less to provide the equivalent of the care given by teams of people in hospitals and nursing homes. That has caused the crisis and it is important not to get into blaming carers, as that can provoke all sorts of guilt in them, suggesting they are dumping relatives.
I wish to be associated with the words of support of others. We are aware of the work that the group has been doing, both in turning this into a serious political issue to be addressed and in supporting the work of carers.
From reading this and other documents the group will be aware of the point I am going to make. This document is focused on financial support which should be given to carers, and Deputy Callanan said the one thing carers need is financial support and the recognition that comes from that support. I am not sure that is right. Of course money helps but it is not the most important thing - the most important thing is probably help and assistance from public health nurses, paramedics or social service workers which, through being present for two or three hours a day, could make life tolerable for carers. We need to put more emphasis on developing the social services infrastructure and community-based health services, which have always been the Cinderella of the health service. I ask the group to comment on this because my impression is that it is very patchy, that it is not too bad in some parts of the country but is non-existent in others.
The Government is committed to developing primary care centres - 25 pilot schemes have begun or are about to begin - and there should be a tie-in here with supports being made available from primary care teams to those doing paramedical work at home.
On financial support, my party endorsed almost everything in the group's document before the last election but many of us were conscious that if the estimates are right and there are up to 200,000 people who could claim carer's allowance, then a considerable cost to the State is involved. If we make it possible to claim all, half or part of an additional or existing allowance or social welfare benefit, which we believe should be the case, or make nursing home subventions to someone still at home, then frankly we are inviting abuse. I am not saying there are hundreds of thousands of people who will claim allowances if they become available but there is no doubt that in order to avoid abuse, there will have to be a more rigorous assessment of needs than at present. I am not sure we have the facilities in place to make that kind of assessment - perhaps the group can clear that up, as it refers to the assessment of needs in its document. Does the group see that being done by local doctors, the health boards or another body?
I compliment the group on its submission. It has approximately 70 community employment workers in the 17 resource centres. How many people would they visit in a week? They obviously drop in, have a chat and go for groceries or allow the carer a break for a few hours. Quite a number of the people on community employment schemes would be lone parents and the scheme is largely town based. Would the fact they do not have cars or transport be a telling factor when it comes to visiting people? I have been told that some rural areas cannot be served because there is a lack of transport for the 70 workers. Is there any overlap between home help and the group's workers or are they completely different?
I also understand the group's office in Longford closed recently. Was that due to a lack of need for the service or to cutbacks? What was the reason? Perhaps Mr. Goodwin could address those questions.
Mr. Goodwin
We felt strongly that the financial situation of carers, apart from the cost of caring - in other words, a person's labour within the home in these special cases - is an important issue. Wages and working conditions are the yardsticks by which others in the economy gauge their situation in life and legislation governs that. We feel, therefore, that it would be remiss to neglect that issue or not to have it in a central position. Having said that, I fully support what the Senator said about the importance of these supports and the help carers receive. We strongly support the idea of having an independent assessment of needs. As I understand it, the health boards are currently examining the situation where, for example, a relative may need to go into nursing home care. Nursing home care has become so expensive that the definition of need is being broken into three categories, from moderate to heavy nursing support, depending on the level a person requires. The nursing home will be paid accordingly and will obviously be paid more for a heavier level of dependency.
An assessment of need for people applying for a carer's allowance is a important criterion that we would support. It will be found that many people will qualify under this assessment so we would warmly welcome it. Carers emphasise that, in addition to financial support, meaningful social support within the home is important, although we must be realistic about what that means. I know carers, for example, who are getting the support of a public health nurse. A full-time carer will provide care seven days a week, while a nurse will go in for perhaps 15 to 20 minutes on one or two days, or in very few cases, five days per week. That adds up to two and a half hours per week at most. The same applies to a home help. When this is added up it amounts to very little, although it should be a lot and if that could be achieved carers would welcome it. What carers are getting at present by way of support, however, adds up to very little over a week. Considering that this small amount of help is only being achieved by a minority of full-time carers, one can see the gap that exists. The Senator is quite right, therefore, to say that this issue needs to be addressed.
Mr. Egan
I would like to take up two points, the first of which is that raised by Deputy Connolly with regard to FÁS and rural transport. There is no doubt that this is a major issue. We have a total of about 140 home respite workers at present, 70 of whom are on FÁS community employment projects. The services of the other 70 are funded through health board grants. We estimate that about 400 to 420 family carers benefit every week from that service. Unfortunately, it is true, particularly with home helps, that if a family carer rings one of our centres seeking the home respite service, there is a waiting list and, also, depending on where they live they may or may not be able to access the service because of the lack of rural transport services. Many participants on community employment schemes cannot afford their own transport and those in rural areas are at a disadvantage to people in urban areas who may be within walking distance of a family carer. This is a huge issue for FÁS.
As regards the Longford centre, the organisation is currently going through a restructuring phase. We are rationalising our services and trying to become more efficient and effective. Services in County Longford are now being provided through our centre in Mullingar. In other words, the resource centre in Mullingar is still continuing with the home respite service, outreach centres and carer support groups. If any health board offered, for example, a figure of €30,000 we would have to decide whether to invest it in a centre or in home respite. It is a chicken and egg situation because we obviously need the centres to run the home respite services. In certain areas, including that of the Midland Health Board, we felt we were a bit top-heavy with centres, so we needed to rationalise and put the money back into home respite services.
Deputy Finneran asked many of the questions I wanted to pose. I thank Mr. Goodwin for appearing before the committee. One question that arises - although I am sure Mr. Goodwin has answered it already - is why the west is left out so much, even though there are so many elderly people there.
Other colleagues have already posed the questions I wished to ask, but I want to be associated with welcoming Mr. Goodwin. The west has been mentioned, although I am from Tallaght. Strangely enough, we have a small elderly population. However, we are growing old fast. I am always happy to applaud the work of the carer's association because my father died almost six years ago. My family, particularly my younger sisters, coped with that situation and were always very appreciative of what had been done for my father in his latter years. As a new Deputy, I am happy to support the association and I look forward to doing so in future.
I am closely associated with the Carers Association, having been involved with the centre in Mullingar. I am aware of the excellent work that is carried out there. The resource centre is very useful because carers, when they get an hour's rest from their work, can gather there and have a chat. Care has been provided on the cheap for several decades, but this has particularly been the case in the past ten to 15 years. As a society, we must do more to help the caring professions and the work that is undertaken by carers.
I have an aversion to the way in which the carer's allowance is subjected to such a rigorous means test. I sometimes feel that, like many other things associated with it, the administrative cost of carrying out means testing is petty. The amount of information required for means testing could fill an accordion-sized document, as Mr. Egan has said, and that puts people off applying for the allowance. Only one sixth of those involved in caring even consider applying. That is why we need to establish, perhaps through the medium of the census, the actual number of people involved in a caring role.
We have been niggardly and mean-spirited in examining this issue. Society owes a debt of gratitude to the many people who have cared for elderly parents or relations in their own homes over the years. It is estimated that savings of about €2 billion have been made as a result. I would say that figure, if not an underestimate, is correct. We do not have sufficient nursing home places available so it is critical that elderly people can be cared for at home where they feel happier and more content. They want to live out their days in an environment to which they are accustomed. We should salute those who have undertaken such work in an unselfish and loving way for their elderly parents and relatives.
We should examine the carer's benefit. I have come across a number of instances where when the carer's benefit of 15 months is up, they are immediately reassessed according to their spouse's income. Some of them do not qualify. One can see ridiculous things happening, such as the spouse being allowed only €20 or €30 to travel 40 or 50 miles a day in each direction. We should be realistic about this matter. Government Departments should ensure that carers are paid realistic estimates of travel costs. No estimates are made for mortgage repayments and outgoings of that nature concerning the home that provides secure accommodation. Oxygen tanks, etc., are often required in the home environment. People often extend their homes by building, for example, granny flats to accommodate those for whom they are caring, but, even though they are saving the State money, they are not allowed any relief on the mortgage they take out for this purpose. We must overcome this mean-spirited and niggardly attitude which has been adopted over the years by all Governments and parties.
The committee unanimously decided to examine the position of full-time carers. This will be a full and detailed study and assessment which will examine the current welfare policy and practices in light of statutory, professional and voluntary supports structures, education and training opportunities for carers and the long-term effects of full-time caring on the physical and mental well-being of carers. I am sure our guests will be glad to hear that we are inviting written submissions from members of the public and professional and voluntary organisations and, obviously, they will be conveying their views. The committee has asked for written submissions by 14 March 2003. We will examine the written submissions and invite bodies such as the Carers Association to present oral evidence and be subject to examination.
The committee takes the position of full-time carers very seriously. Members from all parties have asked very searching questions in order to inform themselves fully for this task, which they regard as a priority project for the next year. We hope to make a meaningful contribution and, hopefully, to be able to influence Government and departmental policy on full-time carers and others who look after elderly people in a positive way.
I thank Mr. Egan and Mr. Goodwin for your very informative presentation and your detailed replies to the various questions raised.
The joint committee adjourned at 4.40 p.m., sine die.