I thank the Chairman and the committee members most sincerely for giving us the opportunity to come to the committee and voice views on behalf of Ireland's 160,000 family carers. This committee obviously spans a very wide brief just as the issues affecting carers span a wide number of Departments, and so forth. Now that the remit for social inclusion has gone to the community sector of the Department it becomes all the more pertinent for us.
I begin by giving a very brief outline of the kind of statistics that sit behind family carers in Ireland. Everybody present, and every public representative, will be reasonably familiar with the role of and issues affecting family carers. Every public representative will have carers calling in on a weekly basis about various issues to do with health services and so forth. The contextual background is that there are approximately 160,000 family carers in Ireland, according to the last census of population. We take issue with that figure because we believe the true figure is much higher. The new census that will be taken in April 2011 has a modified question which is likely to identify a higher number of carers because of the way it is phrased. We will be happy to welcome that adjustment to the census next year.
According to the current figures there are about 41,000 full-time family carers in Ireland. These are people who provide care in their own homes to loved ones. They cannot leave their homes unless somebody else comes to fill in for them because of the care requirement of the person whom they are looking after. In other words, that person requires full-time care, attention, supervision, monitoring and so forth. Out of the 160,000 carers about 90,000 work and provide care. Out of that 90,000, about 14,000 provide full-time care and also work in employment, which is a significant burden for them. About 18,000 of Ireland's family carers are aged over 65 and more than likely looking after an elderly spouse. We are concerned about this cohort of people because in many instances they require care themselves.
An emerging issue which is starting to get a great deal of media attention is that of young carers. According to the current figures and data available to us there are just over 5,000 young carers. Unfortunately, the previous census did not take account of those aged under 15 years so the figure of 5,000 young carers as stated ranges between 15 and 19 years. The new census of population next year will include that age group so we hope to have a better view and better luck in enumerating the number of young carers.
From a social welfare point of view, at present there are about 48,000 people in Ireland in receipt of the carer's allowance. We wish to acknowledge the progress that has been made with regard to this allowance. Obviously, there still is some way to go but progress has been made. There are more than 19,000 people in receipt of the half-rate allowance, which was introduced by the late Séamus Brennan when he was Minister. It gives recognition to family carers who are already in receipt of another social welfare payment. Many of these are pensioners who are providing care, probably for a spouse. That half-rate allowance gives them huge recognition but also allows them to offset the allowance against some of the extra costs of care. Anybody who is aware of carers will know that in a family where care is provided there are many extra costs which are not present in a normal family setting. These include items such as transport, extra heating bills, extra dietary requirements that are not necessarily covered by medical cards, and so on. That was a very welcome introduction and as an organisation we are concerned that it not be targeted in the forthcoming budget. We can discuss that in greater detail throughout the presentation.
There are just under 2,000 people in receipt of carer's benefit. These are carers who were in full-time employment but have given up employment to take up family care. For that they get carer's benefit which allows them to provide care for a two year period during which, under the Carer's Leave Act, the employer has to keep their job open for them.
We are concerned about what seems to be a growing trend, namely, the habitual residency clause which is preventing a number of carers from receiving the carer's allowance. In effect, people return home from abroad to provide care, in most cases for an elderly parent. They are not in a position to say how long they will be here, unfortunately, because they do not know how long the situation will last. The habitual residency clause has five criteria but the main one preventing carers from getting the carer's allowance on returning home concerns what is considered their actual centre. Generally, that is taken to be the property where one lives abroad which is seen as one's centre of residence. That ruling is preventing family carers from returning home and receiving the carer's allowance. They have no income when they come back to Ireland to provide care. We have had a number of instances of this and we hope that the committee will support us on this issue. We have spoken to the Minister, Deputy Ó Cuív, about it and hope there may be some sort of waiver, specifically for carers who return home to provide care.
There are 71,000 people in Ireland in receipt of the respite care grant. That is a payment of €1,700 which comes to full-time carers on 1 June every year. It allows the carer to buy in care for a specific period to allow them to go on holidays, which is why it comes in summer time. It is very much welcomed and we are concerned that it should not be targeted in any budgetary cutbacks proposed. I commend the Department of Social Protection which takes a flexible and common sense approach to how that grant is administered and used.
In a nutshell, in terms of opening comments, it is fair to say, as the Chairman has done, that family carers in Ireland are providing about 3.7 million hours of care per week. That huge sum is being provided largely by a group of people who are invisible. I reiterate that 40,000 are full-time carers. In Ireland approximately 39,000 nurses are employed by the HSE and do invaluable work. However, they can all be clearly identified as to their place of employment and because they wear uniforms, have entitlements to holidays, sick leave and so forth. Yet there is another group, largely invisible and unrecognised in terms of their role, who are saving the State in the region of €2.8 billion, almost €3 billion, per year. That calculation is based on taking the number of hours carers work at home and multiplying that figure by the lowest point on the home help pay scale; it is not analogous to institutional care. It is a solid and reasonable figure and works out at a saving of about €45,000 for every family carer.
In terms of the general issues of equality and social justice for family carers that we are here to discuss today, it is easy to say and reasonable to understand that carers very often experience exclusion and disadvantage due to the systemic and interrelated barriers that prevent social and economic participation. Long-term carers are especially at risk of poor health, social isolation and financial disadvantage. Many have increased costs associated with providing care such as medication, equipment, transport, heat expenses and hospital appointment costs. The cost of parking in hospitals is an issue raising its head on a more frequent basis than was the case previously. In general, if carers are unsupported, these factors often combine to result in deep and persistent social and economic poverty. While carers contribute greatly to the well-being and social inclusion of the people for whom they care, their contribution is often a disadvantage to them and the cost of providing the care becomes a barrier to social and economic participation. As a result of the role carried out by carers, especially full time carers, this presents many difficulties and issues with regard to exclusion and social isolation. They cannot participate in society. Much research has been carried out with regard to carers' participation in society and how they can feel vulnerable and isolated as result.
I refer to access to adequate income for carers. We acknowledge the decision of Government to protect those over 66 years of age from welfare cuts in last year's budget. However, we were bitterly disappointed that family carers got a 3.8% cut in their social welfare payments. This, combined with the fact that the Christmas bonus had been cut, led to a 4% cut for carers during 2009. Carers are the only group in receipt of social welfare payments who must work for such payments. No other group in society who receives a social welfare payment must work for it. I refer to the calls to action we seek in this regard. We wish for the Government to ensure any funding which goes to carers and carer related payments is ring fenced and not targeted in the forthcoming budget. We call on the Government to stick to its promise to ensure the vulnerable in society are protected.
I refer to carers and employment. In 2006, more than 90,000 carers worked in Ireland and provided care at the same time. Of these, approximately 14,000 provide full-time care. They are working and providing full-time care of more than 42 hours per week on top of the work they carry out. The challenge is to ensure those with caring responsibilities have genuine choices in respect of caring, employment or a combination of both. Flexible working arrangements are a key day-to-day requirement for working carers. They should be provided and availed of by employers and carers and co-workers must be aware of carers' roles and needs in society and how working arrangements can be organised to meet these needs. The association calls for funding to be made available to raise awareness of working carers among employers and to provide incentives for the development of more carer-friendly and flexible working arrangements.
Family carers in receipt of the carers allowance or benefit are allowed to work 15 hours per week. We wish for the Government to increase that to 19.5 hours per week. In certain, though not all, situations this would allows carers to supplement their income.
I refer to the extra costs of transport. The fact that the rural transport scheme was kept in place last year was of great benefit to carers. We received several calls last year from people concerned that the rural transport initiative would be taken away. They maintained that was their only method of getting to doctors and their local towns to get prescriptions for the person for whom they care. Unfortunately, the carer does not receive a travel pass. I refer to cases where carers travel with the person for whom they care using their companion pass for a hospital visit or appointment. The person may be left there and then the carer cannot travel back on the bus because the person with whom they travelled does not come back with them. This would seem to be a very impractical method. We seek for carers to receive the free travel pass when they receive the allowance, which would remove such practical anomalies. A common sense approach should be taken. We do not have exact costs for this but I do not envisage that the costs would be high.
One issue arising increasingly relates to when carers bring their cared-for person to hospital appointments and park in a car park. This applies especially in the case of people on public waiting lists. Everyone is called at 9 a.m. and if one does not arrive until 9.10 a.m. one finds there are 15 people already in the queue. The carer ends up paying car parking charges at a high rate because of the inefficiencies in our hospital system. This is likely to be challenged at some stage. It does not make much sense and it is unfair that people are paying for inadequacies in the system which are not their fault. This is an emerging issue. In recent years, every hospital in the country has installed paid parking whereas previously it was free. This is becoming an issue.
Page five of the document refers to social isolation and the loss of independence. The position of caring on a regular basis can lead to isolation, financial hardship, stress and exhaustion. It can create major risks to the carer's own health and includes the loss of various opportunities, for example, those related to employment, education, holidays, hobbies, rest and ordinary family life of which everyone else avails. All these factors mean many carers face deep and lasting social exclusion. This can be especially difficult for rural carers, who may find themselves geographically isolated with limited access to existing supports and services. One need not live in a rural location without transport to be isolated. It can happen when one is living in a city or town environment as well, especially in a caring role.
The association calls for continuation of funding towards training of family carers, which is included in the dormant accounts and funding for training in areas such as equality, advocacy, care in the home, information technology and so on. The year before last, fully €1.5 million was given from the dormant accounts fund specifically to train family carers. It is probable that this has been one of the best investments in the history of the dormant accounts scheme. Such organisations as ours were awarded funding to train carers in practical caring skills. Caring is probably one of the only jobs for which one does not receive training. We hold concerns that when the funding runs out, which is likely to be towards the middle or end of 2011, there will be no follow-on funding. It is expected that this funding will train in the region of 15,000 to 18,000 family carers. Of the 160,000 family carers, some 40,000 are full-time and there is some way to go with regard to this measure.
A nurse working in a hospital or a person working in a nursing home is not allowed lift a person from a bed or move him or her without the presence of two people for insurance purposes. The family carer at home has to take on that role and do it on his or her own, and by and large he or she has no one else to help out him or her. They have to lift the person, move them, bed bath them and feed them on his or her own which can often lead to back injuries and general poor health.
Another point which is quite pertinent for the committee is that we would like to see carers included as a target group within the social inclusion agenda. We call on the committee to support that call which would allow quite a lot of other issues, in particular those around social inclusion, to be dealt with at a local level through the partnership and Leader groups which currently exist.
A group to which I referred earlier is older carers of which there are more than 18,000 or 11% of carers enumerated in the 2006 census of population. Such people are working more than 43 hours per week and are over the age of 65. This presents unique challenges for this group. In many cases some people in the group also require care. They very often neglect their own health when it comes to looking after the person they care for. They obviously put the person first and are very much at risk of social isolation and economic deprivation.
In addition, many older carers face the stress of planning for their future and ensuring their loved ones continue to receive care after they pass away or are no longer available to provide the care. It is something which is a huge worry for older carers and carers of adults with special needs or disabilities. The carer always worries about what will happen if he or she passes away before the person he or she is caring for and who will look after him or her. We find it tends to be something older carers, in particular, are burdened with.
We would like to see needs assessment being introduced, in particular for older people and carers, as a very obvious practical measure which could be used to fight against lack of services and acknowledgement of their role. Needs assessment, where it operates effectively, tends to put services in place before the horse bolts. People see the issues coming down the line and plan accordingly. Unfortunately, we do not currently have needs assessment in place for family carers or older people. We would like to see that addressed.
We also call for the continuation of funding for the senior alert scheme, which was formerly known as the community supports for older people scheme, and to expand the scope of the scheme to include additional security measures such as heat and sensor exits which will allow people to live independently in their homes. A lot of work is being done on how technology can help people to be looked after in their own homes. In terms of foresight, this scheme should help that process to take place.
Many carers who look after people with dementia and so forth find these type of aids very beneficial. If an older person, for example, goes out the front door at 8 p.m. or 10 p.m. during the winter, a sensor can send a text message immediately to a person's mobile phone or a warning signal will pop up immediately on the screen of a television. Other sensors can be used in the chair where an older person sits and when he or she gets up off the chair, a message will appear on the television to let people know that the person has moved. It is a very effective scheme and there was quite a lot of concern last year when it was put on ice for a number of months. It has been reinstated and it has a lot of use in ensuring people can be cared for in their own homes for as long as possible.
In terms of supporting hidden carers, one of the great difficulties which exists around family care in particular is that carers very often do not identify themselves as carers because they say they will look after their parents or their child who was born with a disability. It is an issue which we found has come to the fore over the past five, six or seven years. People are starting to realise it has an impact on their lives and if they did not perform the role, the State would have to take it over and it would cost a lot more. People have realised that if they are supported properly in their role, they will find it a lot easier to perform it and will continue to do it for longer.
It is very important that specific programmes are put in place to help people to identify themselves as carers. We are calling for funding to be made available, in particular for research to advance the understanding and response to issues such as working carers, young carers, hidden carers, carers from other diverse cultural backgrounds and those experiencing social and rural isolation. In an economic downturn research is something which tends to get hit on the head. The issue of carers in Ireland is one that is grossly under-researched and there are many areas on which we need further data. Very often when we speak to Departments or Ministers they look for quite detailed statistical information and organisations such as ours are not in a position to give credible, detailed, research-based evidence because the funding is not available to do that. We are constantly working from anecdotal evidence. To be fair, every politician has his or her finger on the pulse in terms of anecdotal evidence because it comes through the door of constituency clinics.
In terms of equality and social justice, many family carers are overburdened, feel unrecognised and unappreciated and are unable to have any life of their own. The sustainability of family care in Ireland will become increasingly jeopardised unless the fundamentals of care policy are given a new direction, one that fits with the reality of caring in Ireland today. It is imperative, therefore, that the Government works to develop and promote policies which reduce carer poverty and promote social justice and inclusion for family carers.
Since 2002 the association has been a member of the community and voluntary pillar of social partnership, giving family carers a voice in the national partnership process and enabling meaningful dialogue between social partners and the Government in the pursuit of commitments set out in Towards 2016. Our involvement with social partnership has ensured commitments made by the Government in the Towards 2016 national agreement are met. As part of this our organisation receives funding to allow us to participate in a meaningful way within the social partnership process and we want to ensure that funding comes through the Department of Community, Equality and Gaeltacht Affairs. It is important that the funding is held and it is one piece of funding for which there is quite a lot of evidence to suggest that it should be increased to allow the issues to which we referred to be dealt with properly. The social partnership model has been advantageous for groups such as ours and our continuation and proper involvement in it is justified.
In terms of the national carers strategy, Ireland's ageing population and the shift towards community health care makes it imperative that carers are put firmly at the centre of the Government's agenda in this regard. The publication of the national carers strategy committed to in Towards 2016 and the programme for Government were to set out for the first time the Government's vision for family carers and establish a set of goals and actions in areas such as income support, health care, services, housing and transport. The publication of the strategy is vital in recognising the contribution made by family carers in providing a cohesive and cross-departmental response to their needs.
As people will be aware, last year the Government decided not to proceed with the carers strategy, which was very disappointing to us and carers in general because it would have been seen as a roadmap in terms of setting out how carers would be recognised, how services would be provided to them and ensuring people would be cared for in their own homes for as long as possible, which is Government policy. Carers are the people who make the Government's policy a reality in terms of ensuring people can be cared for in their homes for as long as possible. We ask the committee to support us in our call to the Government to reconsider and publish the strategy, but we are not seeking a strategy that sets out exact timeframes with regard to spend and so on. People are realistic about where we are in terms of the economic downturn, but as time goes by it is evident that policy is shifting towards community care. Unfortunately, the resources put into community care are nowhere near the level required; at present they are in retrenchment. Every day and almost every hour our organisation receives calls from people who are unable to access services such as home care packages and are certainly unable to access home help. In Cork, home help in particular is almost non-existent. The Government will push its responsibility back to the family and the family will underwrite the Government's responsibility. We are not asking that Ireland be turned into a nanny state but that the Government provide for people to be properly cared for at home and support the carer in that particular role.
The contribution made by carers to the economy is conservatively estimated to be in excess of €2.8 billion and could be as high as €3 billion each year. Despite this, the delivery of this highly valuable service to our older and vulnerable adults and children with special needs comes at a high cost to carers. Research has consistently identified that carers are an at-risk group for negative well-being. They have higher than average rates of depression, chronic illness, injury and poverty due to the physical, emotional and financial demands of caring.
Despite the fact that family carers are already propping up Ireland's fragile health system, recent announcements by the HSE point to the expanding role they will play in its future, with less patients in our hospitals, shorter hospital stays and an increasing focus on community care. Research has shown that 90% of community care already takes place within the home, yet family carers will be expected to carry an even greater responsibility for community care provision. The Carers Association is concerned that carers will simply be unable to cope as the increased burden of care as well as reductions to the benefits and supports they rely on such as carer's allowance and carer's benefit, the loss of the Christmas bonus, the introduction of the carbon tax, prescription charges on medical card holders and the increase to €120 in the monthly drug payment scheme all take their toll. I would not underestimate the impact that has on family carers who are only in receipt of a social welfare income. Huge costs are incurred by carers who provide care at home which would not occur in normal family circumstances.
The association urges that in the interests of responsible Government, priorities for expenditure be aligned to the evidenced needs of family carers. Investment in social welfare supports, health services, education and training, strategies to improve equality and social justice for carers, as well as the publication of the national carers strategy must remain a priority for the Government.
