I thank the committee for having us today during national carers' week. This is a great opportunity for us to come here on behalf of family carers to voice the main issues that affect carers regarding health issues.
The members have the document and I shall go very quickly through the first section or introduction. Most members will be very much aware of the role of family carers and the kinds of statistics that sit behind it so I shall run though this briefly. There are about 160,000 family carers in Ireland, according to the last census. As everybody will know, family carers provide very valuable work looking after loved ones in their own homes. By and large, a carer does not make a choice to provide care. An actual incident happens to a loved one, to a husband, wife, child with special needs or a person who gets a terminal illness. Somebody in the family has to make a decision to stay at home and provide that care. Obviously, this saves the State huge sums of money.
There are about 40,000 full-time carers in Ireland, people who are doing this job around the clock, 24 hours a day, seven days a week. They are not in a position to leave unless somebody else comes in to fill in for them because of the level of care required by the person who is being cared for. According to the 2006 census there are more than 90,000 people who provide care and work in paid employment. Some 14,000 of those work full-time as well as providing more than 43 hours of care per week. That is an horrendous load to have on one person. Statistics wise, there are just over 5,000 young carers in Ireland but I would not know whether these are aged between 15 and 19 years. The statistics from the 2006 census did not allow us to pick up how many carers there are below the age of 15. The new census to take place in 2011 will be able to pick that up, which is a strong development.
It is fair to say that in recent years there have been a number of developments within the social welfare framework that support carers. The development of the half-rate allowance is obviously very significant and the development of the respite grant and the carer's benefit certainly support many people and are very welcome. It is of vital importance they are all protected within the forthcoming budget. We estimate that carers in Ireland save the State approximately €2 billion. That is by comparison to the lowest point on the home help pay scale. When one works out the number of hours carers provide and multiply that figure by the lowest point on the home help pay scale, which is just over €14, one comes to a figure of about €2.8 billion. That is not comparing it to the cost of institutional care which would be very much higher. That figure of €2.8 billion is a very defensible one.
I shall move quickly into the priorities for the Carers Association and family carers in terms of health services for this year. There are about ten of these and I shall try to move through them as quickly as I can. Respite is probably the most important practical solution intervention that carers require in their own homes to allow them a break. There are different types of respite. The traditional model is where the person being cared for goes into institutional respite, to a local day-care unit or nursing home for a period, perhaps a day or two or three weeks. That is very important. Another important aspect which carers tend to look for more often is home respite where the person being cared for stays at home and somebody comes in to relieve the carer. All research carried out in recent years indicates that home respite is where the trend is heading. Home care packages which were introduced a number of years ago currently run to an investment of approximately €130 million per year by the HSE. This has been used very wisely by the HSE in terms of providing respite to carers. The home care package can be used to buy in help to the home which is specifically built around giving the carer a break. It is also used to provide help to the carer in their caring duties. We find that is working well where it can be obtained. There appears to be some anecdotal evidence in certain parts of the country that home care packages are not always put back in place after a person goes into long-term care or perhaps passes away. It is difficult to be absolutely certain of that but the evidence we have, as a provider of home care packages, would be that in certain parts of the country those packages are not replaced at present.
Home help is of vital importance to the family, the carer and the person being cared for. Evidence at present suggests that home help is being reduced and is difficult to get in certain parts of the country, especially in the south. In Cork, in particular, at the moment it appears it is almost impossible to access the home help service. On a daily basis we have telephone calls from carers reporting that the number of hours of home help they have been in receipt of are being reduced, very often to a point where the service is ineffective. We had a situation very recently where somebody who was receiving an hour of home help per week was reduced to 45 minutes. To be honest, it is very difficult to see how effective 45 minutes of help in a week is to anybody. This would be a very valuable service if it was held at the appropriate levels one would expect.
Another worrying trend we see within the home help service is that in certain parts of the country it appears that carers who are in receipt of the carer's allowance are being deterred from accessing home help service and that at local level the HSE is saying that because the person is getting a payment from the State for the work they are doing therefore they should not get the home help service. The State is very clear that the carer's allowance is not a payment for the work being done but is an income supplement. The Department and this committee could take on that issue and look into it. It is a worrying trend and, again, is one of those things which are happening beneath the surface. It is not really on the radar but the evidence comes back to us that unofficially it is being used in certain parts of the country to deter people from getting the home help service. It would be very unfortunate if that were the case. It goes right against policy in this regard.
Our association, along with the Royal College of Psychiatry and Care Alliance Ireland have carried out a number of studies looking at the health and well-being of the family carer. There is a lot of evidence to show that carers frequently ignore their own health needs in favour of those being cared for. Carers tend to be people who give all the time and put themselves last. This has an adverse effect on their health, their psychological and mental health as well as their physical health. There is a lot of evidence to suggest that carers' health suffers significantly as a result of providing care. In this regard it is essential that medical cards are given to family carers on a non-means tested basis. In other words, if people become full-time carers they should automatically get a medical card which would allow them at least one full medical check in the year. This is used in other countries where governments state very clearly they value carers and the work they do and recognise the carer's health can be damaged by providing care. They put this intervention in place which seems to work well. It would not cost a lot of money and would give a significant signal that the Government is very much in favour of the work carers are doing and recognises what it is they do.
One of the outcomes in last year's budget was that the drugs payment scheme went from €100 to €120. In families where care takes place we find that is a significant issue and it needs to be looked at and reviewed. Obviously, it has a greater impact on families where there are health issues than on those without. Carers are in that predicament.
Needs assessment is one of the cornerstones that would allow the health services to deal with the issue of caring, carers' health and service provision for family carers. This is something we do not have in Ireland. It does take place in UK, which has passed an Act that allows each carer to obtain a needs assessment by right. It is similar to the needs assessment here for people with disabilities, under which one is entitled to the needs assessment but not automatically to the services. However, it is a step in the right direction. We felt it would form an integral part of the carer's strategy, but unfortunately that has not happened. We will talk about that in a few moments.
We recently had a conference which dealt with the issue of young carers. As I said earlier, according to the statistics there are just over 5,000 young carers in Ireland, but we estimate the true figure is a multiple of that. Children as young as five are involved in providing family care at home, often to a grandparent or a sibling. It often takes place in situations in which the relationship between parents has broken down; the child lives with one parent or the other, and that parent becomes ill. There is also much support for parents with alcohol or drug addiction.
Under Towards 2016 the Government decided to do some research into this area; the work was given to NUI Galway, which has recently published a study on young carers on Ireland. It is vital that the Government, particularly the Department of Health and Children, deals with this issue. We call on the Government to establish a specific budget for the area of young carers. Perhaps through a pilot project, we must consider how to identify young carers. One of the big issues in the UK and other countries in which carers are dealt with specifically is the identification of young carers. We will approach the Minister of State with responsibility for children in this regard.
To return to the core area of family carers, the fair deal scheme has come more and more to the fore over the last number of months. There appears to be much confusion among carers about the rules and regulations governing the scheme. There is a general lack of awareness among older people and certainly among family carers about how the scheme actually operates. One of the advantages of the old scheme was that one could access what was known as short-term subvention for respite care, which came to about €330 per week. This is now gone — it no longer exists under the current scheme. It could still be considered within local HSE budgets but, as everybody is aware, at the moment it is quite difficult to access anything that is not specific. There is also quite a long waiting period for the processing of applications under the fair deal scheme. While that is going on, carers are still caring at home.
As most people here are aware, the Government committed to the formulation of a national carers' strategy in the Towards 2016 agreement. Quite a lot of work was done on that strategy by an interdepartmental group headed up by the Department of Social Protection. Unfortunately, in the spring of last year, the Government decided not to publish the strategy. Since then, despite the amount of work that has gone into it, it has sat on the shelf. Our position on this is that there is no particular policy pertaining to carers that sets out a roadmap and considers specifically how carers will be served and valued over the next number of years. This is despite the fact that carers are probably the biggest national resource the country has. It is a shame.
We will call on the committee to give us support in calling for the Government to publish the strategy and to state clearly what it would intend to do if it did have the resources. It should at least put the strategy out there so people can see it is committed to it. At a later stage, when the economic indicators improve, we can start to work on implementing the strategy. Since the shelving of the national carers' strategy, the Government has introduced the national drugs strategy and gone ahead with the national positive ageing strategy, which signals that these issues are more important than that of family care.
As everybody is aware, Ireland has an ageing population; therefore, in the future, there will be more pressure on family carers than ever before. HSE and Government policy is that people should be cared for in their own homes for as long as possible. Professor Drumm has consistently stated that community care is the way forward. Everybody is aware of the various rationalisation programmes taking place in hospitals, with patients being admitted to hospitals much closer to the point of surgery and being discharged much sooner afterwards. The period spent in hospital is much reduced, as is the period of convalescence, and thus families must pick up the slack.
The fair deal scheme is probably a fairer scheme than the one that was there previously, and it is a sign of progress. Having said that, however, it only considers high-level care; people who require medium and low-level care unfortunately cannot get access under the fair deal programme. What will happen to those people? Again, they are pushed back on the family.
The 160,000 carers — we expect this number to be larger in the next census because the question is being changed — are saving the State, conservatively, about €2.8 million per year. There will be more pressure on them than ever before as the State pushes care back on the family as much as it can. Families will need to provide care without any extra resources because services are being reduced, and, at the same time, we do not have a strategy. In view of all this, the future does not look very bright for carers.
