I welcome the delegation from Comharile, Mr. Tony McQuinn, senior manager for development and support, Ms Helen Lahert, manager of the social and policy service and Mr. Michael Browne, a research consultant. I welcome the delegation in the context of our ongoing review of the position of full-time carers. I remind the delegation that while the comments of members are protected by parliamentary privilege, those of visitors are not.
Carers: Presentation.
Mr. Tony McQuinn
I thank the Chairman for the opportunity to attend this meeting. The three of us will give an overview of our report. I will open the presentation by looking at the policy context of the "Supporting Carers" report. My colleagues will outline the issues and recommendations of the report.
Comhairle was established in 2000 as part of the Government commitment to the overall mainstreaming of services for people with disabilities. It is the agency responsible for the provision of information, advice and advocacy services to members of the public on social and civil services. Comhairle has developed the OASIS information website, supported by the Information Society Commission as an e-government initiative. The website provides information to the public on a wide range of entitlements and services, including information on the rights and entitlements of carers. Comhairle also produces a range of information publications including the monthly information bulletin Relate. The board resources information providers in the independent-voluntary sector and in the statutory sector. We have a particular relationship with the network of Citizens Information Centres around the country that receive funding, training and other supports from us to enable them to provide a free confidential and impartial information service to the public. Comhairle also provides training and support for the Money Advice and Budgeting Service.
One of Comhairle's statutory functions is to promote and develop the provision of information on the effectiveness of current social policy and services and to highlight issues that are of concern to users of those services. The report arose out of our carrying out of this function. In carrying out this function, Comhairle relies heavily on feedback from Citizens Information Centres based on the needs and experiences of users of the citizens information service. The 85 Citizens Information Centres and the National Citizens Information Call Centre dealt with more than 470,000 public queries in 2002. Information givers in Citizens Information Centres identify queries which have a social policy dimension and feed this information to the Comhairle social policy team. By carefully documenting the experience of service-users, information givers can build up a pool of knowledge covering inequities, gaps and anomalies in both entitlements and service delivery. This information is used in the preparation of social policy reports.
Of the 470,000 queries dealt with by Citizens Information Centres in 2002, approximately 6,500 related to carers and people in receipt of informal care in the home. Citizens Information Centres from around the country identified a number of areas where they felt there were social policy implications to be drawn from the queries presented. These included queries regarding eligibility for carer payments from the Department of Social and Family Affairs, the position of part-time workers in relation to these payments and limitations with regard to the support from community care services for carers. The "Supporting Carers" report is based on analysis of: feedback from Citizens Information Centres; recent research, statistical and survey material on carers - including the report produced by the Joint Committee on Family, Community and Social Affairs on the challenges of ageing, care-giving and political choice in 2001; questionnairescompleted by regional health board carer co-ordinators; and interviews with representatives of the carers association.
Analysis of policy changes and initiatives in the area of care provision shows that, while the challenges facing the system are new, most of the solutions provided continue to rely on the model of home-based care provided by family members. While home-based care is desirable for many reasons and is the preference of most people in receipt of care, it cannot be expected to carry the future burden of supplying the majority of care services unaided. New and expanded support services are needed to guarantee adequate care services and to improve the quality of life of family carers. Plans to increase and develop supports for carers, including the carer's allowance and short-term respite care, outlined in the Health Strategy 2001, are welcome. However, such plans need to be implemented in a consistent and effective manner if they are to make a real difference to the circumstances of family carers.
The care of older people and people with disabilities in Ireland has been traditionally carried out primarily by women who work in the home who did not, or who had little opportunity to, participate in the labour market outside the home. Low labour market participation rates among women have provided the underpinnings of the informal care model in Ireland. However, between 1985 and 1999 women's employment rate in Ireland has increased from a little more than 30% to more than 50% and continues to increase.
The existing care support system, which is already stretched, is likely to become even more so as the need for care services increases due to population ageing and increased life expectancy. While demographic change in Ireland will be less drastic than in many other Western countries - due to relatively high birth rates - the number and percentage share of older people will increase as people live longer and the birth rate decreases. The number of older people, those aged 65 years and over, is projected to double between 1996 and 2031 according to Central Statistics Office figures. Current demographic trends will lead to an increase in the need for care services and a decrease in the supply of those services by the traditional care providers, mostly women. The traditional care model is becoming increasingly unsustainable as the number of those who need care increases while the number of those who are available to provide largely uncompensated informal care decreases.
According to a census pilot survey carried out by the Central Statistics Office in 1999, 35,000 people provide more than 50 hours unpaid personal care per week; 17,000 provide unpaid care for 20-49 hours per week; and 79,000 provide unpaid personal help for 1-19 hours per week. There was a question in the last census the analysis of which will give a clearer indication of the number of carers in Ireland.
There is a strong case to be made for supporting carers on the basis that care at home is the preferred option for many. There are also economic arguments in favour of this approach. However, there are key aspects of the carer support system that need to be enhanced and developed. The Irish social welfare system contains three forms of financial support for family carers. The carer's allowance is a tightly means-tested payment available from the Department of Social and Family Affairs. It is estimated that 25,000 people will qualify for the carer's allowance this year and this is the highest level to date.
The review of the carers allowance carried out by the Department in 1998 suggested that a new non-means-tested benefit be introduced for carers who are providing the highest level of care in looking after highly dependent persons. However, this suggestion has not been put into practice. Despite repeated calls for a universal payment by interest groups, such as the carers' association, the carer's allowance remains a means-tested income support mechanism rather than a payment for caring.
A social insurance benefit - carer's benefit - was introduced in October 2000 for those who want to take a break from work to carry out caring duties. The carer's benefit is payable for 15 months. There are in the region of 500 people in receipt of this payment. Carers in receipt the carer's allowance or carer's benefit are also entitled to an annual respite care grant and some carers are entitled to free travel and to the household benefits package which includes an electricity allowance, a telephone allowance and a free television licence.
The domiciliary care allowance is paid by the health boards to the parents of children with disabilities and is not means-tested on the parents' incomes. The majority of people who are caring for others receive no payments from the State. The situation of family carers in Ireland needs to be improved, particularly for carers who are providing the highest level of care. Recent initiatives have focused on providing greater income security for some carers. However, such developments continue to be on the basis of income maintenance supports and do not deal with the issue of payment for caring. Carer support in terms of service provision also continues to be inadequate to meet needs.
Mr. Michael Browne will now talk about integrating caring, welfare and work opportunities and will address some of the service provisions issues that were identified in the report.
Mr. Michael Browne
On the question of integrating caring, welfare and work opportunities, greater work flexibility is required for people who wish to undertake caring duties and to alternate between, or to combine, caring and working outside the home or doing paid work in the home. Given the demographic trends, if Ireland is to continue relying on family carers, payments to carers and the conditions attached to these payments need to be reformed in an imaginative and creative way. The Carer's Leave Act 2001 goes some way towards recognising the need for flexibility in employment. However, even though many people availing of carer's leave provisions would be entitled to carer's benefit, it is likely to be used only by those who in secure employment. The Act therefore fails to address the situation of those who are in the most unfavourable position financially, i.e. those in temporary work or without sufficient PRSI contributions. Carer's benefit is also only payable for 15 months, which puts a strict limitation on the suitability of this payment in on-going situations.
A key issue that emerges from the analysis is that many carers experience isolation - geographical, social and emotional. More is required in the form of individual support systems which maximise the role and contribution of service providers - statutory and voluntary - other family members and peer group support from other carers. Carers frequently have complex individual needs and more help is required to assist them in acquiring the knowledge and skills needed for the caring role. Carers need assistance with planning for opportunities to maintain their own mental and physical health and well-being. This is important because many carers tend to become so involved and absorbed in their caring role that they may overlook their own needs and interests. They care for others but not for themselves. Much of care work is also heavy, manual work - lifting, washing and so on - that may result in health problems for carers.
Measures should be undertaken to redress the isolation experienced by many carers and to prevent situations where one individual has total responsibility all of the time. Support groups, training programmes and personal development courses for carers have much to contribute in this regard although it is not always possible for people to get away to attend these courses, networks and support groups. I do not know if the committee has ever tried to arrange a meeting with carers but it would find it difficult to get a time because many of them are house-bound and cannot get away. The report refers to some type of social work service that would provide individual type support for individual carers.
Home-based support services provision needs to be made for a more comprehensive range of home based support services on an ongoing basis as well as at times of crisis. Many carers need more help and support in dealing with the demands of night-time and week-end caring. Home-based respite care is particularly important since the preferred care alternative of most people is care in their own home on a long-term or short-term basis.
Some categories of carers were identified as having additional specific needs such as carers who are older themselves, carers in rural areas, carers of children with disabilities and carers who find themselves in the caring role overnight e.g. carers looking after stroke victims, traffic accident victims and so on.
While public health nurses provide a range of services for carers and persons in need of care e.g. nursing care, advice, support, assessment of individual needs for services and special aids, there are unrealistic expectations of what public health nurses can achieve in the context of their current workloads. They are nevertheless the human face of the service that carer's meet on a day to day basis and naturally they have high expectations and most often those expectations are delivered within the limitations of what the public health nurse can do.
The Home Help service makes a vital contribution to supporting the work of carers and has become a cornerstone of service delivery and support for them. However, more is required in terms of the availability of the service, consistency between and within health boards, ongoing training and skill development.
The clear message from carers is that there is a dearth of respite care services particularly in a crisis or emergency. The report pointed to more flexible opportunities for respite care being required both at home and outside the home to enable carers to take breaks on an ongoing and planned basis.
Day care services can also contribute to the situation of an individual carer but the availability of such services from the carer's perspective is inadequate.
The report refers to fragmented service provision and information deficits. It is important to bear in mind that when we look at the needs of carers we also look at the needs of those being cared for. Often services are provided on the basis of arbitrary entitlement in the sense that people may or may not get different types of services. There is a real problem there.
When talking about fragmented service provision, the report is referring to things such as the cost of heating for people with a disability or older people and the complexity of paying for additional heating costs. The location of services is important - there is no point in having a day care service if one cannot get to it because it is geographically removed from one's home, for example, in a rural area where public transport may be non-existent or very inaccessible to people with disabilities. What are the implications of this for carers?
The other important point about this is the complexity of service provision in that some services are being provided by voluntary community organisations, some by the health boards and so on. There is a total lack of clarity on the part of carers about who is responsible or where one should go and this causes a certain confusion. We should put ourselves in the position of looking at the service delivery system from the bottom up; it appears quite a complex system with a frequent lack of clarity about points of contact with particular services.
The question of information also arose. This is a significant issue for an agency such as Comhairle and one that it is attempting to address. Again, carers say that there is a lack of information on entitlements, benefits and so on; whether, for example, one is entitled to a home help, physiotherapy or occupational therapy. The issue of information has to be considered in the context of what I referred to earlier as arbitrary entitlement, namely, when it cannot be stated in very clear terms whether one is entitled to a particular service. Carers experience this as a major difficulty on the ground and it is one that has implications for the way information is presented.
I will let Ms Lahert go on to talk in detail about the specific recommendations in the report.
Ms Helen Lahert
I will go through some of the recommendations, although there is a lot more detail in the report itself. I will then briefly summarise some of the key points, as we see them, in the report. They are mainly concerned with where we should go from here because this is an issue about which there is not much disagreement. Everybody agrees that more support is needed for carers and for caring in the community and the home; the issue is how we put it in place.
The concept of a national strategy for carers should be explored. Such a strategy would contain targets for service development and a plan for co-ordinating support services. This is vital. In The Irish Times today there is an article about a pilot scheme for carers of people with dementia. No more than ten families are benefiting from this at present. Another two pilot schemes set up fairly recently, Home First and Slán Abhaile, are also very worthy projects, but they need to be monitored and if they are working well the finances need to be provided to extend them throughout the country. We need a national strategy that brings together all these issues and encompasses the recommendations from our report and from other reports, many of which are referred to in the Comhairle report on carers.
We have specified that carers who are providing the highest level of care are particularly in need of an additional support called the continual care payment. This was recommended in 1998 in the review of the carer's allowance. Comprehensive home support care packages, based on an integrated approach to care planning for individuals, as proposed in the National Health Strategy 2001, are needed and should include night-time support and weekend support. These have already been recommended in previous reports and this national strategy needs to bring all these together and consider them in a comprehensive way. More personal support services for individual carers and families, including key workers, should be put in place. Specifically, a socialwork support service for carers should be established.
Comprehensive, needs-based respite services are urgently required. This issue has come up quite frequently in the media. Some people have recently found themselves with less respite care than was previously the case. Of all the services mentioned by Mr. Browne, respite care is the one that encourages people to continue caring and allows them to have some kind of life while they are doing so. More opportunities should be provided for carers in the form of consultative forums so that they can be involved in the process of policy-making and service planning. If this strategy is to be put together, it is vital that carers and their representative organisations are involved in its planning.
Integrated information services run jointly by health boards, citizens' information centres and other relevant statutory and voluntary bodies should be developed. As Mr. Browne mentioned, this is part of Comhairle's remit and we take it very seriously. We will be working on this and making contact with other organisations. The current role of the health board carer co-ordinator should be extended to streamline the services provided by both voluntary and statutory organisations at district as well as community care area level. We know that there are carer co-ordinators within the health board areas, but the role needs to be developed and defended. The possibility of establishing a number of dedicated carer helplines should be explored. The health boards should appoint development workers to enhance the work of the voluntary organisations working with carers.
It is agreed - there are plenty of statistics to show this - that our population is ageing. People are living longer and our birth rate is decreasing. Women have done the lion's share of caring in Ireland in the past. The employment rate for women has jumped from 30% to 50% in the 14 years between 1985 and 1999 and continues to rise. Our traditional model of care is becoming less sustainable. Surveys consistently show that care in the home is the preferred option in most cases and, although the options in this report have not been costed, the rising costs of good quality institutional care provide a strong economic argument for the support of caring in the community and in the home.
Our current system of care is fragmented and while improvements have been made in successive budgets, they do not represent fundamental change or a systematic approach to developing the support of care provision, building on a care and case management approach. While many of these pilot projects are welcome, it is important that they are monitored and that any reports from them are considered closely to see how well they are working. It is also important that the resources are put into mainstreaming those that are working well.
This is where a national strategy for carers, which takes a long-term view, becomes increasingly important. This strategy would see care as a continuum, with supports for independent living and short-term or long-term support for caring in the community and the home, and would take into account the detail of the recommendations in this report and others. Hospital and institutional care would then become a crisis option or an option of choice. The distribution of resources within the health care system that this strategy would entail is a political choice which will influence strongly the type of society we build for our ageing population and, ultimately, that which we build for ourselves. We will all have to provide care or receive it at some point in our lives. Therefore, this is something we all need to take very seriously. Comhairle hopes the recommendations in the Supporting Carers report will contribute to fruitful discussions, initiatives and co-operation between carers, service providers and decision makers. We are particularly happy to be able to provide the Joint Committee on Social and Family Affairs with this report to assist it in its deliberations.
Thank you very much. We will now take questions from the members of the committee.
I welcome the presentation, which I have to compliment. Our guests have their fingers on the pulse. There is no doubt they have hit every single point that needs to be hit. I also compliment them on Relate, the publication they send out to us on a regular basis. It contains wonderful information which I use regularly in the Dáil.
Our guests made a number of points and suggested that we should be appointing more people to the health boards. I disagree with them on that. That is where the funding is going. The biggest issue at the moment is support for people at home. I listen to this every single day. The other people I must compliment are the women of this country. Again, they have been let down by the State, by politicians and by health boards. It is women who are doing a big percentage of caring. They are the people who are there to deal with the problem but get no recognition for the work they do if they do not qualify under the means test for the carer's allowance. It is not that they do it for money. They do it for the love of their relatives, because their husbands or other family members need care, but it is wrong that they are not supported and do not get the recognition they deserve.
The health boards must make major decisions, and I hope that our guests will continue to push the Government in relation to home help. We have people at home who are being looked after by their relatives, and there is no support from the health boards or the State. There is no financial support or support in relation to health services. For the past week, the major debate has been the reduction in home help. I was told yesterday of a 91 year old woman who was taken out of hospital by her family, who thus freed up a hospital bed and were prepared to support the State and their mother. The health board offered just 5 hours of home help per week for a woman at home with a bad back who was looking for a bit of support. The family want to keep the woman at home but the home help amounts to just one her per day from Monday to Friday. What does the family do on Saturday or Sunday?
Our guests are right in what they say about the carer's health, and I am glad they raised it. It is something we all forget about. We all think about the person who is being cared for. I know by looking at people who walk into my constituency office whether they are looking after somebody on a full-time basis. We have not used the word depressed today but maybe we should. A lot of these people are depressed because they feel there is no help or support for them and nobody to back them up. They feel tied into a corner they cannot get out of. The person they are caring for becomes more dependent on them.
The summary with which we were presented today was excellent - I mean that sincerely. Our guests hit every point that had to be hit. The financial back-up and the support service from the health boards are not there. The bottom line relates to political decision making. We must have the courage to make the political decisions to put the resources, finances and support services in place for people who are caring for the elderly. We already have the problem of not enough places in public nursing homes and people now cannot get their relatives into private nursing homes, even if they are prepared to pay for it. Neither can they get the support at home to look after relatives.
The women of this country have been undervalued and have not been supported by the State or recognised for the work they do. Fewer people would be entering public hospitals if these people caring at home got a bit of financial support and a bit of support from the health services. There is a lot of reading in the document we have been presented with and it is something we will look at. Our guests have summed up the situation very well, and it is not often that I say that. They have hit every single chord that has to be hit, and I compliment them on that. There is a huge number of unpaid carers. Our guests made the point themselves that people are not looking for money but for support and recognition of the job they do. The need financial support if they cannot go out and work but they are not getting it.
Our guests also made the point that there was a review in 1998 by the Department of Social and Family Affairs, and a report yesterday detailed all the money the Department has saved. It has saved it in two ways. Firstly, they imposed further means tests on carers, and instead of increasing the money they receive they decreased it. The same happened in relation to the unemployed. It is wrong to target these people. We have a terrible situation in terms of the disabled person's grant. Money has already run out and most local authorities are in difficulty in this regard. These grants are to assist people to make alterations to their homes - putting in showers and so on - to cater for people with disabilities. That money has gone. We are told that the home help scheme is in difficulty all over the country. Is that the right message to send out to people who keep their family members at home?
This is an excellent report. I do not think anything has been left out and I have to compliment every one of the authors on their presentation.
Mr. McQuinn
I thank the Deputy for that. We feel the report does reflect the situation. As I said at the outset, much of the information contained in the report is drawn from feedback from the network of Citizens Information Centres and from people who are using the service, carers and others, who find themselves in that situation who go along for information on entitlements and services that very often are not there.
One of the points we have made in the report is that a plan is needed. While we are all aware of the difficulties for carers, it is going to get more difficult as we go on because the profile is changing. More of us are going to need full-time care and attention and fewer people will be available than has traditionally been the case to provide that care on a full-time volunteer basis. It is going to cost more and one of the things we need is a very realistic indication of what those costs are and whether they will involve additional staff.
The Deputy specifically mentioned his opinion in relation to the care co-ordinators, and it is hard to say whether we need more of these or not. However, increased support for carers invariably will mean that more people will be needed to provide it. The people are not there currently to provide the sort of co-ordination role necessary to ensure an integration of services. The point we were making was that will cost money and it is going to take people to do it.
I welcome the three people from Comhairle and congratulate them on their report. I also congratulate every carer in the country for the job they are doing because they are entitled to due recognition, as Deputy Ring said.
Currently the incentive is to go into a nursing home if a person gets old or feeble. A huge amount of money is being paid out for this. I am not against nursing homes whatsoever - they are necessary - but there should be choice for people and an option to stay at home. We must either improve things in terms of the carer's allowance or bring in a home-based subvention, which would create a bit of competition between nursing homes and keeping people at home. It seems that when the nursing home subvention goes up the cost of staying in nursing homes also increases. Maybe it has to but this seems to be the way it follows. If a home-based subvention was in place it would create a little competition and give people a choice.
The other area that should be supported much more is social services. They are providing a great service to keep people in their own homes. They provide somewhere for an old person to go and relief for the carers and everybody else. A lot more help should be given to social services. Many people have said that nothing has been done in terms of the carer's allowance but a lot has been done in the past few years. We were in this situation a few years ago and one would not have dreamed of applying for the allowance because one would not have a hope of getting it. Now one can encourage people to apply because the first €430 is disregarded. However, this is not enough and should be higher. With this and a home-based subvention we would be moving in the right direction. The delegation's organisation is looking out for carers, which is vital and necessary. I congratulate the organisation on its work.
Mr. Browne
Regarding carer's allowance, a crucial choice regarding payment for carers is whether the payment becomes a payment for caring per se or an income support mechanism. The changes made to date have been significant, a point on which I agree with the Deputy, but that nettle has not been grasped. The payment continues to be seen as an income supplement and is viewed as such by the Department rather than as a payment for caring.
The census proved there are thousands providing care and getting nothing in return.
Mr. Browne
I agree. That is because if the ground was changed and there was a payment for caring, a lot more people would be brought into the net - those excluded on the means test ground.
I apologise for not being present at the start of proceedings. I have some experience of caring which is a major issue. While there have been some improvements, we have a long way to go. As this organisation was set up by the Government, it may be difficult for its members to comment as they would like.
The 2001 health strategy and promises made therein were mentioned. The strategy is dead and buried as it does not seem to be getting funding, particularly when one looks at hospital funding and the position of carers.
I agree with the points made about the means test, to which Mr. Browne referred. The payment should be for the carer rather than seen as additional income.
Regarding respite care, I dealt with the case last year of an 85 year old who two adult handicapped offspring who could not be placed in respite care for two weeks to allow her to visit her only other daughter in England. It was a desperate situation. They could have been place in a psychiatric institution but that is not what their mother wanted. It is desperate that with all the money spent in the last five years we still have such cases.
As the Government appoints this body, has it discussed these issues with the Ministers for Health and Children and Social and Family Affairs? There seems to be a dearth of understanding at that level.
I asked parliamentary questions last week about the disability grant, which is supposed to be paid through the county councils. The answers were unreal and unacceptable. Some county councils are no longer implementing the scheme because they do not have the money. Enormous amounts could be saved under the scheme if people were properly cared for in proper accommodation.
I dealt with a case last week where the county council contacted me because a home could not be found for a person three weeks in hospital. A bed was being occupied that could have been used by someone else, this at a time when the health board is under severe pressure. At a fairly nominal cost, a disability grant can provide a bathroom or shower and make it possible for someone to be cared for at home.
I congratulate the delegation on the report. As Deputy Ring said, it gives us information we can use constructively to encourage the Government to act on behalf of the elderly and carers. Some 50% of home help hours in my area, the North-Eastern Health Board, are being abolished. Deputy Ring mentioned that some get five hours' help. I know of one couple who got five hours' help to aid an elderly man get out of bed. As this was cut to three, he was only supposed to get up three days a week. That is the situation. We should not kid ourselves.
Mr. McQuinn
Comhairle is a statutory body established under the auspices of the Department of Social and Family Affairs. What is distinctive about our role in terms of social policy feedback is that we support the independent network of citizen information centres which are used by thousands. We are developing a process whereby we get feedback from the staff of the centres on the issues they deal with which have a social policy dimension. This gives us a unique insight into service delivery. Our role is to highlight these issues and report to Government. Therefore, this report would have been given to the Minister for Social and Family Affairs and other relevant Departments.
Has there been a meeting?
Mr. McQuinn
We have not had a specific meeting but the report has been considered by our board. Following their consideration, it was forwarded to the Minister. We also produce other submissions, including an annual pre-budget submission, in which highlight some of the issues raised here.
Ms Lahert
Deputies Ring and Crawford mentioned the disabled person's housing grant. As Mr. McQuinn said, we get feedback from information centres and the national call centre. We also work with the money advice and budgeting service and try to work on the issues that come through. The disabled person's housing grant comes up frequently for discussion. A review of the scheme is under way. We are talking to and working with the National Disability Authority on a joint report on the issue. We have put out a social policy alert, by which we ask the information centres to watch out for a certain issue for a given month or two. They are looking at the disabled person's housing grant.
In the south Monaghan area, involving the Dundalk or Drogheda offices, there is an eight months delay in obtaining an OT appointment in connection with a disability grant application. That is totally unacceptable. That information was conveyed in a written reply to my colleague, Councillor Aidan Murray, from Monaghan County Council yesterday. How can the elderly be catered for on the basis of an eight months delay in arranging an OT appointment?
I join my colleagues in welcoming the delegation and complimenting its members on their policy report which contains much useful information. Ultimately, choices have to be made and it behoves all of us to highlight the situation of carers with a view to their being afforded greater priority. In the context of availability of information, there was reference to the CSO estimate that, in September 1999, there were some 131,000 unpaid carers. When will more up to date information be available? I ask this in the context of the various recommendations made for the introduction of non means tested benefits for carers in the most difficult cases. There have been reports and recommendations, but have we any information as to the number of carers and persons in receipt of care in that category?
On feedback from the delegation's organisations throughout the country, in terms of choices, is it the view that additional finance should go towards bringing in more carers? In posing that question, I speak as a member of the Labour Party, which fully intends, when next in Government, to remove the means test aspect of the carer's allowance. Be that as it may, what are the delegation's preferred choices for support for carers, in the event of limited additional funds being made available? Should that go towards provision of services or increasing the number of people in receipt of facilities?
I refer to another matter which may not be directly within the area we are discussing, although two of my colleagues have already referred to it. On the disabled person's grant, the delegation referred to a review or report in that regard. What is the view of the delegation on a means test, as at present, for anybody who is entitled to a disabled person's grant? I am aware of people who are practically millionaires applying to local authorities for disabled person's grant. Does the delegation regard that as an anomalous situation on which it might make a recommendation in future?
I believe respite care is one of the best services we can provide for people at home. There is a recognition, throughout the report, that carers are often under enormous pressure and feel very isolated. If we could guarantee such people some ongoing respite, perhaps on the basis of one weekend in three, they would have something to which they could look forward as a means of, as it were, re-charging the battery. I would like to have more emphasis placed on that aspect. On the maximum period of 15 months for payment of carer's benefit, there are many cases in which the full 15 months period is not required but there are also cases where the period needs to be extended.
With regard to day care services and ongoing complaints of a shortage of carers and services, I am aware of a situation in a FÁS scheme whereby workers were paid to look after people with a learning disability on a day care basis. Those workers received training during that assignment and became very effective care workers. Although FÁS maintained the places subsequently, because of the rules with regard to FÁS schemes it could not find the individuals to fill the role. There should be some relaxation of FÁS rules in that regard to avoid the difficulties arising from the withdrawal of workers after they had established friendships and trust with the people with whom they were working. Having invested substantial funds in training such workers under a FÁS programme, it is wrong that, because of certain rules, they can no longer continue to provide care.
Deputy Crawford referred to the situation in the south Monaghan-Dundalk area, where there is a waiting list of eight or nine months for an inspection by OTs and a replacement OT has not been appointed. It is quite possible to buy in OT services and that should be done in exceptional situations such as this. If the Government is not in a position to provide the service, the requirement for it, as part of the application for grant, should be waived.
Mr. Browne
I will respond to the comments of the two Deputies, in so far as I can. With regard to the number of carers, as my colleague indicated earlier, there was a question in the last census which will provide a base line in that regard. In terms of targeting those, that has to be done in the context of a comprehensive needs assessment, carried out by health boards and housing authorities, with targeted individual care packages being put in place accordingly. The analysis has to be conducted at two levels: general, in terms of a national profile but more specific in terms of individual needs in particular areas.
On the question of choice for carers, I reiterate a point made by earlier speakers that the same subvention should be available in home based care situations as is currently provided in a private nursing home setting. That would be a more equitable arrangement and would offer a realistic option in some situations.
With regard to the disabled person's housing grant being universally available, my response is that there is a great deal of merit in having such a universal payment. While there may be problems in relation to equality of access, perhaps there are other ways of achieving a balance. If the means test is also introduced, it will add another layer of complexity. The strengths of a universal payment sometimes outweigh the fact that some people receive an entitlement when they could pay themselves. However, that is a personal view based on the concept of a universal payment being something that we should seriously consider before letting it go.
With regard to carer's benefit and the 15 month period, it would make more sense to have a flexible approach. However, the 15 month period relates to the fact that this is a social insurance-based payment. The payment is tied into that system and is not for caring, per se. It is obvious that increased flexibility would be of benefit.
With regard to home help and personal assistance services, while everybody accepts their merit there is not, to date, a watertight system in place for delivering a comprehensive home-based support service for carers and their charges. That issue needs to be tied into the concept of comprehensive needs assessment, based on the provision of tailored packages of care for particular individuals.
Many people complain to me about information centres. I heard a contractor advertising a service for putting in a special staircase to lift an elderly person up the stairs on local radio. However, people encounter difficulties when they seek grants for such improvements and I find that the information given by these centres regarding grants, when it is brought to my attention, is often not correct. This can cause problems for those who think they are going to get some form of grant.
There are three agencies dealing with the elderly: the Department of Social and Family Affairs, the health boards and the county councils. I am not sure which of these agencies should decide a disabled person's grant. Perhaps the time has come for us to consider setting up a new agency to deal with the care of the elderly and their problems, rather than having three different agencies dealing with one area.
The Department of Social and Family Affairs assesses the elderly for carer's allowance, the health boards assess them for their needs and the county councils assess them for the disabled person's grant. There is a great deal of wastage and duplication between the three agencies. Is there no way to rationalise this area? I have often had experience at council level of having to wait for a report from a medical officer, only for that officer to say that he or she is waiting for a report from an engineer. At the same time, people are waiting months for action. There should be a simper way to tackle this.
One of the major difficulties is that, over the years, we have got caring on the cheap. This is not just about money, people want recognition. It is estimated that at least 150,000 people are involved and I will be interested to see the census figures in this regard. If we are to base our assessment on the report of the Western Health Board, the numbers would well exceed 200,000 if the figures were extrapolated across the country.
There are too many issues of an ad hoc nature in regard to dealing with the problems confronting carers. Carer’s associations are setting up centres across the country, but this often depends on whether a particular health board has enough financial wherewithal to help them out in that regard. Those centres have played a vital role for carers and facilitated them coming together to share their problems and to have some time off.
It is an indictment of society that the 24 hours a day, 52 weeks of the year nature of caring is not recognised and it was important that Mr. Browne emphasised the continuous nature of caring. Women have often borne this burden in the home and can be left isolated and without recognition. That is accentuated in rural areas where transport is a major issue in the context of a carer taking a couple of hours off. There are no respite care facilities or personnel available on a continuous basis.
It is important that the report recognised the special needs of certain categories of carers, some of whom are also elderly. One of the difficulties found relates to carers caring for disabled persons, whether a son or daughter, who are in receipt of the widow's pensions or otherwise. That payment precludes them from obtaining the respite care grant. We are in a new era and I hope that a strong recommendation is made to the Minister, such as this committee has made, that what are perceived as niggardly obstacles to recognition of the important role played by carers are removed. Those on a widow's pension or otherwise should be able to get the respite care grant. It is only a small sum covering two weeks, but recipients feel recognised by it, as shown by the delegation's comprehensive evaluations and studies, which have been excellent and have played an important role.
Those are the issues which I see as important. We have to cut through the layers of bureaucracy which people perceive as obstacles and impediments. As Comhairle has stated, people want to be looked after in their home environment where they feel most content, although that is not a reflection on anyone else. Deputy Callanan is correct about the home care subvention payment in that people feel more content at home.
I hope that the work of Comhairle, which has played an important role, will compliment areas which the committee is studying and that there will be a positive outcome. Whether there are 150,000 or 200,000 carers, they play a tremendous role. As has been said, we are just a few years away ourselves from being in a position where we will hope that somebody will care for us.
Mr. McQuinn
I agree. Comhairle hopes this report will contribute positively to the debate regarding carers so that the planning required to meet the needs that are staring us in the face occurs.
To respond to Deputy Ring on the multiplicity of services, Comhairle, in its short life, and some of its predecessor organisations have discussed this issue and we are promoting the concept of integrated service delivery. As Mr. Browne said, services in regard to carers are characterised by fragmentation. The issue raised by the Deputy involves different agencies. As an organisation, Comhairle is heavily involved in supporting the development of e-government in its many manifestations. We have produced information which consciously tries to cover the range of services available so that there is a total package of information. We have also supported projects such as the integrated service delivery project in Donegal, which brings a number of agencies together to try to deal with the sort of issues encountered by the public in trying to access a range of information. We are supportive of any measures to rationalise, to end duplication and to integrate services, taking the needs of the user into account.
With regard to the network of citizens information centres, we have a particular brief to support that service. Comhairle puts a high priority on ensuring that citizens information centres and any of the services we support are, first, furnished with accurate information by Comhairle on an ongoing basis and, second, receive the training and support to be able to deliver that information accurately. Our experience would be that this is the usual experience of people using citizens' information centres. If anything else occurs, we would be interested in hearing about it in order that we can follow it up.
Mr. Browne
I wish to make one brief supplementary point. It is difficult to provide information in situations where the entitlement is arbitrary. Sometimes one does not know until one has engaged with the person and the negotiations have been done. Deputy Ring is skilled in negotiation and perhaps can deliver an arbitrary service for somebody who might not otherwise get it.
I, too get frustrated.
Disabled person's grants are vital to keeping a person at home. While more people know about it now and it has become very popular, it is unfair to say that the Department has cut back. The Department contribution is still available and it is up to the local council to provide the remainder.
Will the Deputy go to the council and listen——
Will the Deputy allow me to finish. It may be that we should be looking for the Department to pay a higher contribution because of the fact that——
Because of the cutbacks they are not giving the money.
Deputy Callanan, without interruption.
The maximum grant is nearly €20,000 and the council may pay €6,000 of that, which is probably too high a proportion for the council to pay. Perhaps the Department should consider paying a higher percentage of it at this stage because it is a vital part of keeping an old person at home.
I thank Mr. McQuinn, Mr. Browne and Ms Lahert for their most informative presentation. The document they presented will provide further information for us. We are focusing on carers, particularly full-time carers in the home, with a view to examining the entire area over the next 12 months. We hope to have a detailed report prepared by early next year and the presentation we heard will play a pivotal role in that. We may have to call on the delegation to appear before the committee at a later stage as we progress our examination of this area. We will advertise nationally for submissions in the coming months. We look forward to future contributions from this delegation, which has added much to our deliberations.
The joint committee adjourned at 3.25 p.m. sine die.