First, I extend our thanks to the Oireachtas Joint Committee on Social and Family Affairs and to the Chairman for affording the Carers Association this opportunity to appear before it this morning to give this presentation.
The context of the presentation is the current national carers' strategy, which has been committed to by the Government in both the programme for Government and the national agreement, Towards 2016. The presentation's context also is slightly heightened by recent commentary in the press with regard to carers, carer's allowance and the half-rate carer's allowance in particular and how the latter might be under review in respect of current cutbacks and so forth.
Our presentation this morning will run for approximately ten minutes. The approach will be first to provide members with a brief overview of who is the Carers Association. It will then consider how carers in Ireland are configured at present, as well as the role of family carers. Thereafter, we will get into the meat of the presentation, which will mainly concern the findings of two items of research that have been carried out recently. This will put on the table clearly the views of family carers regarding current services and existing supports for carers. We then will consider what needs to be done within the context of the national carers' strategy.
The Carers Association is a national voluntary organisation that was established in 1987. Since the establishment of the Carers Association, the issue of family carers has begun to receive a much higher profile. Until five to seven years ago, not much was known about family carers, who were a hidden group, which, to an extent, they remain to this day. However, the issue of carers has been put on the national agenda by the Carers Association and by a number of other organisations. At present, as an organisation we have 16 carers resource centres, approximately 37 full-time staff and approximately 278 part-time staff who mainly go into the homes of family carers to provide respite to carers. Our funding comes through the Department of Health and Children and the HSE. In addition, a certain amount comes from the Department of Social and Family Affairs and FÁS in particular.
As I noted, the role of the organisation mainly is as a lobbyist and advocate for family carers. We do a lot of promotion and awareness work, which run hand in hand together. We provide respite services to carers, which amounted to approximately 170,000 hours of respite in 2008. A huge part of our work comprises providing information to carers regarding what is available to them in respect of their rights and entitlements under various Departments, their entitlements within the HSE and so forth. A huge issue that has come under the spotlight in recent years is training for carers. We provide training to approximately 700 family carers per year. We also wish to welcome a recent announcement of dormant accounts funding, of which the Carers Association was the beneficiary to the tune of €572,000. It is to provide training to 1,600 trainers over the next two and a half years. A total fund of approximately €1.5 million was disbursed by the Government just before Christmas and this funding is very welcome.
While I imagine politicians are more familiar with this issue through their constituency work than anyone else, family care does not always necessarily involve a family member, as it also may be a good neighbour. It refers to someone who is providing full-time care and attention in their own homes to a person who more than likely is another family member although it may be a friend. In most cases, however, it generally involves mothers, fathers, spouses, siblings or children. At present, there are 161,000 family carers in Ireland, of whom slightly more than 40,000 do so on a full-time basis. That means the aforementioned 40,000 people are in their own homes seven days a week, 24 hours a day. They cannot leave their houses unless someone else comes in to allow them to leave to do whatever they must do. In other words, the person who is being cared for requires full-time care and attention and there are more than 40,000 such people.
As for the carer's allowance, recent statistics show that approximately 43,500 people are in receipt of a carer's allowance. This figure includes almost 16,000 people who are in receipt of the half-rate carer's allowance. In other words, a total of 43,500 people are in receipt of a carer's allowance payment. At present, an examination of our nation's demographics reveal there will be a huge increase in the number of older people, which will increase by 80% between now and 2025. There also will be huge increases in the number of people with disabilities, as well as a vast increase in the number of people with dementia. It is expected there will be approximately 40,000 people with dementia in Ireland by 2020 or thereabouts.
Almost 5% of the total population are involved in family care. This is much smaller percentage than one will find in Northern Ireland or the United Kingdom and the reasons this may be the case can be discussed later. As noted earlier, the main part of this morning's presentation is based on the findings of two items of research that have been carried out quite recently. The first was carried out as a joint project between the Carers Association and the Irish College of Psychiatrists. It specifically examined the health of family carers and how their health is affected by their caring roles and has thrown up some interesting statistics.
The main statistic is that approximately 28% of family carers described their health as not being very good. Almost half have experienced being mentally or physically drained as a result of their caring role. Some of the key findings show that almost half of family carers surveyed had been diagnosed with a mental health problem. One in four carers have been diagnosed with anxiety problems and almost one in five carers have been diagnosed with depression. This tends to show that the mental health and well-being of carers probably is affected by their caring role to a greater extent than the physical aspect of their health. Physical aspects tend to include back ache, the main issue for carers, stomach ulcers and so forth. The findings clearly show significant problems around anxiety and, in particular, depression. Carers were not self-diagnosing. Rather, they had been diagnosed by doctors. These are strong facts.
I will briefly address a report entitled, Listening to Carers. We consulted two other caring organisations, namely, Caring for Carers Ireland and Care Alliance Ireland. The report, which was funded by the Equality Authority, was conducted at the end of 2007 and published by the Minister for Social and Family Affairs in May 2008. Its basis was the approximately 430 family carers who attended eight consultation meetings around the country and who told us how they felt about the HSE and Department of Social and Family Affairs services then on offer to them. In the coming pages, I will describe those carers' opinions.
The first heading is that of community and home care services. By and large, family carers felt that they were being left to their role where the service provider believed that a family carer was in place. This is in evidence across the country. If service providers are of the view that a family carer is in place, the services received by the family will probably be much less than the services provided to a family where no family member is present to support them. People were of the opinion that the providers' approach was at arms length, namely, that there was a lack of engagement if they felt that family carers were in place.
Long delays cause considerable problems and people felt that it could be difficult to access services if a family member was providing most of the care. In those situations, the delay tended to elongate. People felt that there might have been a lack of respect for and understanding of the carer by service providers in particular. They also felt that the HSE and the Government did not acknowledge the significant service being provided to the State by the carer. When the carer was in place, the services provided were not as good as when a carer was not in place. While there is evidence of inconsistency in service delivery, greater delays, increased difficulty in accessing services and the providers' arms length approach constituted the one consistent point.
On specific services and supports for the family carer, information was a considerable issue. People found accessing information when necessary difficult. This can cause stress and anxiety, as evident in the research by the Royal College of Psychiatrists. People also found that service providers lacked information and training. For example, someone telephoning his or her local HSE office might be sent from Billy to Jack because it is not Billy's area, but Jack then sends him or her on to Mr. Y. We received significant feedback in this regard to the effect that it was adding to the stress and strain of the role. Obviously, there should be a one-stop-shop where a person could get everything sorted out with a single telephone call instead of being sent around the houses.
The physical and emotional strain of caring was deemed detrimental to the health and well-being of the carer. Carers tend to neglect their own health because their focus is on the people for whom they are caring. Their health suffers as a result.
Needs assessment is a significant issue. According to consistent feedback from carers, there is no way to assess their needs and the State should put its shoulder to the wheel in that regard. Therefore, the person's needs would be assessed up front, thereby removing much of the unnecessary aggravation that might be caused when accessing services.
The main service that carers want is respite care, particularly targeted into homes, as this would allow them to rest or to leave their homes if, for example, they needed to do the shopping. The full-time family carer is in the home seven days per week, 24 hours per day. He or she is not in a position to leave unless services are being provided.
Concerning income support, the Government made it clear to us and the rest of the sector at the outset of the national carers' strategy that it would not abolish the means test for the carer's allowance or introduce a wage for family carers per se. I will run through this section quickly. From the point of view of the Carers Association, adequate income is a considerable priority. As we have been told that this issue will not be addressed in the strategy, there is no point in flogging a dead horse. However, it remains a key priority for our organisation and, given the research, family carers.
It is fair to point out that family carers acknowledged the developments and improvements in income terms in the past three to five years. However, there is still a long way to go and it is worth noting that the income level is starting from a low base. The difficulty with the carer's allowance is that it is means tested and does not take into account, for example, the fact that people give up well-paid jobs to provide care at home or the value of the work being done in the home. Unfortunately, it takes into account the income of a spouse or partner. This is a major problem for people who have given up well-paid jobs and found themselves working much harder at home and under more stress and strain than they were while in paid employment, yet a partner's income is still taken into account. The rate of the carer's allowance is not in line with rates for similar work. The lowest point on the home help scale is approximately €13 per hour, but the carer's allowance is only €220 or so per week. There are considerable anomalies.
Another anomaly revolves around the fact that people are not entitled to a pension while providing care. Their PRSI contributions are not counted. We hope that the new carers' strategy will be able to solve this problem. The number of contributions required under the scheme to be introduced in 2012 may disenfranchise many family carers from their entitlements to pensions, a matter that must be examined, even in the current economic climate.
The other aspects that must be examined are employment and work-life balance. Of the 160,000 family carers, just over 40,000 are full-time carers. Some 120,000 people are involved in paid employment but at the same time providing care. They may very well be providing more than 40 hours of care per week. There are major issues in regard to the services provision and services in place to allow the person to engage in full-time employment but at the same time provide care at home.
In the past six years we have noticed an increase in people sandwiched into a position where they need two incomes in the family in order to put bread on the table, without having a lavish lifestyle. When a family caring situation arises, they are not in a position to try to give up the job because they need the income. They are trying to juggle care and work at the same time and this is creating major problems for people. Much must be done in the work-life balance aspect of this issue. More can be done within legislation to allow people to have more flexible working arrangements, to allow them to take time off to provide care. The carer's benefit, under the Carers Act, is helping the situation but more could be done if we introduce flexibility. Where carers are in a full-time caring situation, they see that their position will change in the future. They wonder what can be done and what is in place to allow the person to return to work in a seamless manner.
Social inclusion was a major issue for people. They felt that when the caring role is taken on, one's social life disappears. They are housebound and feel as if they are prisoners in their own homes in many cases. While the caring role is very rewarding, many issues arise, particularly in respect of isolation and transport, particularly if one lives in an isolated part of the country. This was a major issue for people who were not in good circumstances in terms of their social life. Their friends and social life were gone and this was making the situation worse.
The conclusion is that there must be a fair shouldering of the caring responsibilities by the State. The State needs to put its shoulder to the wheel. One of the major issues is that the State tends to step in when all else fails, when the family carer breaks down this situation needs to change. There must be adequate income support. The current system is not adequate, it is obsolete and we need a new system for remunerating carers. The other issue is the range of services for family carers. These must be targeted and the only way to do so is through a needs assessment system.
The organisation has picked four priority issues for today's presentation. I refer to the national carers' strategy. We have been told by the Department that the carers' strategy will not be as good as it could be if we were not in the current economic climate. The organisation does not want this situation to be used to lessen the effect. The effectiveness of the carers' strategy will be seriously affected by the economic situation in which we find ourselves. As an organisation and a nation there is a degree of understanding as to how that is the case. There is also clear understanding of the specific things that can be done to make people's lives much easier, to support them and to acknowledge that carers are providing us with 3 million hours of work per week in the health services. If that was taken away, where would we be?
One of the major issues is that this fact is not acknowledged. Representatives of the health services do not go to someone and say that there would be great problems without the person and that the health services will support the person to continue the job. According to this report, the health services withdraw and decide that there is already someone doing the work and that they will not examine it unless they come under pressure to do something. This is one of the key problems that this research has identified.
The carers' strategy must do two things. It must acknowledge that the economic situation is a problem in terms of the scope of the strategy. The strategy must set up clear review mechanisms and must identify the elements that will not be included because of the economic problems. The Government must be clear and say what it would like to do with those issues if it had the money. It must then say that, as it does not have the money, it will ensure the document is reviewed. The review should not be a case of examining what is in the document but bringing these issues back to the table and keeping them under review. If we are fair and honest in ensuring carers get the best deal out of this strategy and the best deal in the future, this is the key element that must be included.
Needs assessment must take place. It is difficult if people say that we want to care for people in their homes for as long as possible, which is the policy, and at the same time that people's needs will not be examined. This is disingenuous. Everyone is aware that needs assessment take place within the disability strategy concerning those aged five years and under. If an assessor from the HSE is assessing a disability, it would be quite simple and practical to assess the family carer and decide that the person is not trained to do the role and needs training. We often find that family carers must lift and move the person being cared for. A nurse working in a hospital would not be allowed to do that. When the older person goes into hospital, one finds two or three nurses doing the same job the carer must do on his or her own, yet the nurses would not be allowed to do it on a one-to-one basis. Needs assessment could examine these issues.
Another important point is the annual health check. Each carer should get an annual health check. This would amount to the Government and the State recognising the role of carers, understanding that carers save the State much money, recognising the importance of carers and wanting to protect carers in their role to ensure they can continue to provide the care. To do so, the State should examine the health of carers once a year to ensure that carers are in perfect health to continue the role because we do not want the carers' health to suffer as a result of this role. Research by the Royal College of Psychiatrists clearly shows that a carer's health can suffer as a result of the caring role.
Within the carer's allowance, a carer can work 15 hours per week. We would like to see that increased to 19 hours per week. The reason is that the carer would qualify for back to work schemes and community employment projects. There is evidence that the Department of Social and Family Affairs allows people to share care in terms of the carer's allowance. On that basis, they allow people to work 19 hours per week because they share the role with another carer. Therefore, they are free for the other 19 hours per week. It does not happen in many cases but there is a precedent.
The final point is quite topical. People are familiar with the comments made by the Minister with regard to carers' funding, carer's allowance and the halfway carer's allowance. The data may be subject to the review group examining current spending, spending programmes and Civil Service numbers. That group will also examine the carer's allowance, how it is spent and whether areas can be cut back. There was commentary on the half-rate carer's allowance. We want this strategy to enshrine the fact that the funding in place will not be cut and that at least we will hold on to what we have. Many in receipt of half-rate carer's allowance are in receipt of an old age or widow's pension. The level of response to the comments in the weeks since they were made has never been witnessed before by our organisation. If the issue comes to the fore, it will be larger than that of the medical card. Anybody in receipt of half-rate carer's allowance is already receiving a pension. The allowance is approximately €110 or approximately one third of a person's income.
There is a great deal of commentary on social partnership with regard to a pay freeze and pay cuts. Nobody is discussing a 30% pay cut for anybody. However, it is possibly being considered for a group working 3 million hours a week in health services and saving the State approximately €2.5 billion a year. Imagine taking action which would affect the agriculture industry. There are 40,000 full-time carers. There are also 40,000 full-time nurses. Imagine stating one third of their wages would be taken from nurses. There would be mutiny.
The difficulty carers have is that they are a hidden group. They do not work in a large hospital where politicians can have an opening day and put a plaque on a wall. They work in their own homes, which should not be taken advantage of. We are looking towards the future with regard to the delivery of a carer strategy. It is Government policy that people should be cared for at home for as long as possible. We cannot state the allowance will be taken from people retrospectively. It would be disingenuous to state we want to provide care for people in their own homes for as long as possible and also cut funding. It would be a poor day for Ireland as a nation.
Deputy Charlie O'Connor took the Chair.
