REPORT TO THE JOINT OIREACHTAS COMMITTEE ON WOMEN’S RIGHTS
MEL COUSINS, JULY 1996
“My husband [who has multiple sclerosis] has gone from using a walking cane, to a walking frame, to being full-time in a wheelchair. Now he can no longer stand up unaided which makes it exceedingly difficult to transfer him from wheelchair to bed or into a car to take him to Mass, hospital appointment, chiropodist or wherever is needed … .
I work full time of necessity … . Due to severe pain my husband sleeps little at night which necessitates my getting up to him several times to give whatever comfort I can by means of panadol etc. I use a baby alarm and wake at the slightest sound. My day starts at 6.30 to allow time to give him his breakfast, medication and to wash him. At 8.30 I dress him and put him in his wheelchair before I cycle 4 ½ miles to work. I cycle home at lunch time to feed him. My wages don’t allow the luxury of running a car … .
My daughter who does not live at home comes at 3.30 to put him to bed for an hour’s rest and I take over when I get home at 6.30. I live in a constant state of exhaustion.
My life is just one of the many of other carers and you can see that it is not easy. Carers, however, don’t need praise or pity but would welcome a little practical help to keep body, soul and mind together. The hardest part is the fact that nobody outside the family seems to care and the carer suffers from enormous guilt because they see unwarranted suffering that is outside of their control and which they seem powerless to alleviate.”
Submission from a carer to the Commission on the Status of People with Disabilities quoted in Tubridy (1995).
The objective of this report, commissioned by the Joint Oireachtas Committee on Women’s Rights, is to provide an evaluation, including appropriate recommendations, of current and potential forms of support for female carers of older people and people with disabilities in the context of the demographic changes over the medium term, including, inter alia, consideration of the role of the carer’s allowance. The study is based on estimates of the supply and demand of carers derived from relevant population projections.
Despite the importance of the role of carers in Irish society, there has been little official concentration on the needs of carers in Ireland. This report aims to focus on the needs of carers themselves while recognising the importance of balancing those needs with the needs of the person being cared for.
Scope of the Report:
The term “carer” is used to refer to persons providing informal care in the community which is currently provided on an unpaid basis. The majority of such carers are women and many, though not all, are related to the person being cared for. For a discussion of theoretical issues concerning women’s caring work see Lynch and McLaughlin (1995)
“Older person” refers to people aged 65 and over. The term “person with a disability” is used to refer to adults under the age of 65 and children with disabilities. In fact, the incidence of disability increases with age and, therefore, many older people might also be categorised as people with disabilities. However, in order to avoid double counting of people over the age of 65, in the context of this report the term “people with disabilities” is confined to people under that age.
The term “residential care” refers to care of older people and people with disabilities in non private households, usually in geriatric hospitals and homes, welfare homes, private and voluntary nursing homes and other institutional settings. In general terms, the issue of residential care is outside the scope of this report. There are, however, several important links between policy in relation to residential care and care in the community and several of these key issues are addressed in the report.
The terms of reference of the study require the establishment of a “long-term” support framework for carers. In terms of the demographic projections, this report refers to the period over the next fifteen years up to the year 2011. Detailed population projections are available for this period of time. While projections are also available from the Central Statistics Office up to the year 2026, the longer the period involved, the greater the likelihood that the projections will be inaccurate. In addition, given the very rapid rate of economic and social change currently taking place in Ireland and Europe, it becomes increasingly difficult to predict how socioeconomic change will affect the needs of carers in the longer term.
The recommendations in Chapter V focus on actions which should be taken within the next five to ten years. This time frame was chosen on the basis that it is unrealistic to expect that important policy changes can be put in place overnight. On the other hand, the rapid nature of socioeconomic change makes it is difficult, if not impossible, to make detailed recommendations for the longer term. That is why one of the key recommendations of this report is that a system of ongoing review of policy in relation to carers should be put in place.
Over the period covered by this report up to 2011, there is a reasonably gradual rise in the number of older people in Ireland. However, it is important to note that in the period after 2011 a much more rapid increase in the number of older people is predicted. While the impact of demographic change can perhaps be overestimated (Fahey, 1995), there is no doubt but that this increase in the number of older people will pose considerable challenges to the support system for carers. While it may not be possible to predict the detailed policies which will be needed as the twenty first century develops, it is of vital importance that the coming ten to fifteen years are used to put in place systems and structures which can respond both to the existing needs of carers and to the likely increase in need after the year 2011.
The methodology adopted in this report included:
1. Literature Review:
A literature review was carried out of existing studies of the position of carers in Ireland, in particular those published by the National Council for the Elderly, the Economic and Social Research Institute and the Alzheimer Society. Studies in relation to carers in Europe, in particular those commissioned by the European Foundation for the Improvement in Living and Working Conditions, were also reviewed. Details of the relevant reports are set out in the bibliography.
2. Population and Labour Force Projections:
Projections in relation to the potential demand for care over the period covered by this report were developed utilising the population and labour force projections prepared by the Central Statistics Office, separate projections in relation to the older population prepared by the National Council for the Elderly and estimates of the level of demand for care based on studies commissioned by the National Council for the Elderly. Estimates of the level of care required by people with disabilities were also produced based on a study carried out by the Economic and Social Research Institute (ESRI) and on administrative data.
3. Contacts with Key Informants:
Contacts were made with key informants in a number of different agencies including the Departments of Health and Social Welfare, National Council for the Elderly, the Revenue Commissioners, Carers Association of Ireland and Soroptimists International. The researcher was fortunate in being able to draw on very detailed submissions to the Joint Committee made by both the Carers Association of Ireland and Soroptimist International of Ireland. Information was also obtained by the Secretariat of the Joint Committee from Health Boards in relation to the operation of the home help services.
Structure of the Report:
Chapter I describes the existing demographic context in relation to carers in Ireland and provides information on the needs of carers available from a number of Irish reports.
Chapter II provides projections as to the number of persons who may need care in the period up to the year 2011 and as to the potential supply of carers to meet this demand. This chapter looks at issues which may affect both the demand and supply of carers over the relevant period.
Chapter III describes the existing support framework for carers including a range of social services provided by the Health Boards, by voluntary organisations and the carer’s allowance provided by the Department of Social Welfare.
In the light of the preceding chapters, chapter IV discusses a number of key issues in relation to the development of a long-term support framework.
Chapter V summarises the conclusions of the report and sets out a range of policy recommendations for the coming decade drawing on examples of policies from other European countries.
I would like to thank John Brady of the Department of Health, John Brown of the National Council for the Elderly, Eoin O’Shea of the Department of Social Welfare, Paul Neenan of the Revenue Commissioners, Judith Ironside, Mary McMahon and Brigid Barron of the Soroptimist International, Eddie Collins-Hughes of the Carers Association and Tony Fahey of the ESRI for their assistance.
I would also like to thank the members of the Joint Committee on Women’s Rights for their very helpful comments on an earlier draft of this report and Mairéad McCabe, of the Committee Secretariat, for her assistance. The views expressed and any errors or inaccuracies are, of course, the sole responsibility of the researcher.
CHAPTER I: THE CONTEXT
This chapter provides information on the existing context of informal caring in Ireland, i.e. the available information on the number and circumstances of carers. It also sets out information, drawn from a number of Irish studies, in relation to the needs of carers.
1. Information on Carers:
There has been a reasonable level of study of the situation of people caring for older people in Ireland, in particular through a range of reports commissioned by the National Council for the Elderly. A study published in 1988 found that 66,300 older people received some level of care (O’Connor et al., 1988). Of these, 24,000 needed “a lot of care”, 25,000 needed “some care” and 17,300 needed “occasional care”. In total, 50,800 persons were cared for by members of the same household while the remainder, about 15,500 were cared for by persons from outside the household.
The vast majority of carers in the same household (98 per cent) were related to the person being cared for. Daughters were most likely to provide care (30 per cent) followed by a spouse (most often the wife), son and daughter-in-law. Almost 80 per cent of carers were female. The study found that a quarter of the carers were themselves over the age of 65 with a further 14 per cent between 55 and 64.
In the case of care being provided by people living outside the home, a very interesting difference of opinion arose between the views of the person providing the care and the person being cared for. Information in this regard was obtained (i) from the older people who were receiving care and (ii) from the carers. While one might expect that the two sources of information would provide a reasonably similar estimate of the number of carers looking after someone from outside the household, in fact, there were very different results from the two sources of information. About 16,000 older people said that they were cared for by somebody from outside the house. In contrast, over 100,000 people said that they provided care for somebody living in a different household. It appears that these differences arise because both parties have different perceptions of what the term “care” means. It appeared from the study that, for example, many carers regarded “keeping the older person company” as giving care. However, the older people did not seem to categorise this as care giving.
Based on the information provided by the older person, again the vast majority of carers (80 per cent) were female. The age group was younger than the carers in the household with only 9 per cent being 65 or over and 25 per cent in the age group 55 to 64. Many more non relatives (31 per cent) were involved in providing care. Based on the information provided by the outside carers, over 70 per cent of all carers were female, less than a quarter were aged 55 or over and many (40 per cent) were non relatives.
In summary, the National Council for the Elderly report indicated that over 50,000 persons provide care for somebody living in the same household and between 16 and 100,000 persons provide care (depending on how you understand the term) to somebody in a different household. In all cases between 70 to 80 per cent of the carers were female. In the case of carers living in the same household, the vast majority were relatives, whereas in the case of carers in different households a significant number (30-40 per cent) were not related.
Several more detailed studies of representative samples of carers have been carried out since 1988 (O’Connor and Ruddle, 1988; Ruddle and O’Connor, 1993; Blackwell et al., 1992; Fahey and Murray, 1994). In general terms, these studies found very similar results in terms of the age and sex of carers, i.e. the vast majority of carers were female and many were quite elderly. The more detailed findings of these studies in relation to the impact of caring responsibilities on carers and the specific needs of carers are considered in the next sections. The most recent study, carried out on behalf of the ESRI for the National Council for the Elderly, found a smaller proportion of persons living in the same household and providing care (50 per cent). The authors suggest that some of this difference may be due to sampling variations between the two surveys but that it may also reflect a move away from relatives and a larger move away from in-house relatives as providers of care (Fahey and Murray, 1994, page 127 - 128).
Unfortunately, only very limited information is available about people caring for children and adults with disabilities (see Winslow (1993) for a small scale study and Ruddle and O’Connor (1993) for a study of 35 carers of persons under the age of 65 with Alzheimer’s disease).
2. The Impact of Caring on Carers:
A number of detailed studies have been carried out on representative samples of carers (O’Connor and Ruddle, 1988; Blackwell et al., 1992; Ruddle and O’Connor, 1993). These provide detailed information about the impact of caring on carers. Because of the small scale nature of these studies, the precise details have tended to vary slightly from one study to another. However, a common picture can be seen in relation to the impact of caring on carers.
One of the key findings has been that only a small proportion of carers (between 16 and 28 per cent) is employed outside the home, many of these in part-time work. Men are more likely to work outside the home than are women carers. The studies have also shown that between 10 and 20 per cent of carers have given up employment in order to take up caring responsibilities. These studies have looked at carers of older people, many of whom are themselves in the older age group, and it is possible that higher numbers of younger carers have given up work (Ruddle and O’Connor, 1993).
In many cases the financial circumstances of the household are not good. O’Connor and Ruddle’s study (1988) found that one-third of households were wholly dependent on social welfare payments while Blackwell et al. (1992) report that 37 per cent of carers experienced financial strain.
The studies indicate that carers spend long hours providing care. Blackwell et al. found that carers in their study of 200 persons spent an average of 47 hours a week engaged in caring activities while O’Connor and Ruddle found that 50 per cent of carers spent four to seven hours a day (i.e. 28 to 49 hours a week) on caring with 35 per cent spending more time than this.
The studies found that caring had financial costs for the carers both through the restrictions on employment opportunities and through the extra expenses involved in caring (for example, travel, telephone and other costs).
Caring also involves personal costs to the carers with significant numbers of carers in all the studies reporting that their caring responsibilities restricted their social lives, affected their relationships with other family members and affected their personal relationships.
In a significant number of cases, carers also reported that the stress and strain involved in caring had affected their physical and mental wellbeing.
Despite the stress and strain experienced by carers, it is important to note that most carers are satisfied with their lives and find that there are positive aspects to caring including the knowledge that the person is being well cared for, the feeling of being appreciated and the satisfaction of doing one’s duty (O’Connor and Ruddle, 1988, p. 166).
3. The Needs of Carers:
The studies identified a number of carers’ needs. These included the following:
(i)Practical help and advice in relation to available services.
(ii)Respite care, including crisis care, and planned regular breaks to allow holidays for the carer.
(iv)The provision of day centres.
(v)Support groups for carers.
(vi)Improved home help services.
(vii)Improved public health nursing support.
(viii)Provision for long-term residential care where the carer was no longer in a position to continue to provide care.
CHAPTER II: PROJECTIONS FOR THE FUTURE
This chapter provides projections on both the demand for and supply of carers over the period from 1996 to 2011. These projections are based on population and labour force projections produced by the Central Statistics Office, separate population projections in relation to older people prepared on behalf of the National Council for the Elderly (Fahey, 1995), information on people with disabilities from a survey carried out by the ESRI (Watson, 1996) and administrative data in relation to children with disabilities.
It is important to note that these projections are not predictions of how many people will require care in the coming years but of how many would require care if the population projections are accurate and if the incidence of care required stayed the same as it is at the moment. In practice, the population projections are almost certainly not 100 per cent accurate (Fahey, 1995) and the incidence of care needed is likely to vary in coming years in accordance with issues discussed in this chapter. Therefore, the purpose of these projections is not to forecast the absolute level of demand for care but rather to say, given what we already know, what directions are trends likely to take.
Details of the population projections used and the incidence of care requirements are set out in Appendix I.
1. Projections of Demand for Care
The projections in relation to the care requirements of older people are based on the population projections prepared on behalf of the National Council for the Elderly utilising the estimates of the incidence of care need amongst older people prepared in two reports commissioned by the National Council for the Elderly (O’Connor and Ruddle, 1988; Fahey and Murray, 1994). While experience has shown that population projections over the next fifteen years are almost certainly not 100 per cent accurate, they do give us a reasonable picture as to the likely number of older people over this period. Given that we know the projected number of older people in the period to 2011, and given that we know the existing incidence of care need amongst older people, it is possible to say, assuming that the incidence remained the same over the period in question, how many older people would require care in the relevant period.
These two studies carried out by the National Council for the Elderly produced broadly comparable figures in relation to the incidence of care need amongst older people. Both studies found that about 20 per cent of older people required care. However, the total incidence level varied both according to age and sex with older people requiring more care and women generally requiring more care than men. Given that the number of people over the age of 80 in the population is likely to increase in the period to 2011 and also given that the number of women in the population is likely to increase, the total incidence of care need amongst older people would also tend to rise (assuming no other changes).
These figures suggest that in 1996 between 77 and 86,000 older people require some level of care with about 31,000 requiring a lot of care. Given the increased number of older people by the year 2011, the projections indicate that a significantly greater number of people will require care by that year. In total, somewhere between 100 and 110,000 older people would require care in the year 2011 with about 40,000 requiring a lot of care. This represents an increase of about 30 per cent in the numbers requiring care.
Adults with Disabilities (18 - 64):
Unfortunately, much less detailed information is available in relation to people with disabilities. There have been no national studies specifically looking at the number of people with disabilities in Ireland nor at the number requiring care. The best information available in this regard is from the Living in Ireland Survey (LIS) carried out by the ESRI in 1994. The Living in Ireland Survey is a survey of 10,000 people aged 18 and over and living in private households. The LIS asked a question about the presence of long-term sickness and disability1 and provided information as to the number of people experiencing a severe restriction in their daily activity due to sickness or disability. It is perhaps reasonably safe to assume that persons experiencing a severe restriction in their daily activities would require some level of care (no more specific question in relation to care needs was included in the survey).2 In the absence of any better data, the information available from this survey has been utilised in this report to produce estimates of the number of adults with disabilities currently requiring care and to project forward to the year 2011.
The information from the LIS indicates that 1.3 per cent of persons in the age group 18 - 34 experience a severe restriction and that 4 per cent of persons in the age group 35 to 65 experience such a restriction. The incidence of severe restriction is slightly higher for women in the older age group than it is for men. Applying these incidence rates to the population projections provided by the Central Statistics Office (Central Statistics Office, 1995), indicates that about 58,000 adults with disabilities require care in the year 1996 and that this figure may increase to about 68,000 by the year 2011. This represents an increase of less than 20 per cent.
Children with Disabilities:
There do not appear to have been any national surveys carried out in relation to the incidence of care need amongst children with disabilities. We can, however, utilise administrative statistics provided by the Department of Health in relation to the number of people in receipt of the domiciliary care allowance. Domiciliary care allowance is a payment in respect of children who require constant care or supervision due to a mental or physical disability. This is defined as continual or continuous care or supervision substantially greater than that normally required by a child of the same age or sex. The scheme applies to children between the ages of 2 and 16 years. In 1994 7,873 children were in receipt of this payment. This suggests that in 1994 there were about 10,000 children under the age of 18 who required constant care. The population projections of the Central Statistics Office estimate that the number of children will drop significantly up to the year 2011 and based on this estimate, we suggest that the number of children requiring constant care in the year 2011 will drop from over 9,000 in 1996 to about 8,000.
The tentative nature of the above projections should be emphasised. As stated above, they are not intended to provide indications of the absolute level of care need in the year 2011 but rather to indicate likely trends. From this point of view, the indications are clear. In the absence of countervailing policies or unpredicted socioeconomic changes, there will be a significant increase in the number of persons requiring care in the coming fifteen years, particularly in category of older people.
It should be emphasised that the three estimates above in relation to children, adults in the age group 18 - 64 and older people, are drawn from very different sources and that they are not directly comparable. The estimate in relation to older people is the most comprehensive and includes older people who receive a lot, some and occasional care. The estimate in relation to children is probably the most restrictive and applies only to children who receive “constant care” thus excluding the unknown number of children who may require additional care due to disability but at a level insufficient to quality for the domiciliary care allowance. The figure in relation to adults with disabilities is based on the numbers experiencing a severe restriction in daily activities. The assumption is made that such persons are likely to require care but it is very difficult (in fact, impossible) to estimate the level of care required. Accordingly, the three figures given above should not be totalled in order to give a total number requiring care.
2. Factors Likely to Influence the Demand for Care:
The above estimates are based on the assumption that the incidence of care need will remain the same as current levels. They take into account variations in demographic factors such as the aging of the population. However, they do not take into account other socioeconomic changes which may affect the incidence of care need in the coming fifteen years. There are a number of factors which may affect the incidence of care need amongst people in the community and these are discussed below.
1. The Balance between Residential and Community Care:
Following the reports on the Care of the Elderly (Inter-Departmental Committee, 1968) and the Years Ahead (Working Party, 1988), official policy on the care of older people is to maximise the number of older people who can remain in the community and to minimise reliance on institutional or residential care. Similar policies exist in relation to people with disabilities (e.g. Review Group, 1991) and this approach has been restated in the Health Strategy (Department of Health, 1994). It is not, however, clear that there has in fact been a shift away from residential accommodation and towards care in the community.
For example, between 1966 and 1986, the Census figures show a marginal rise in the number of older people living in non private households, from 8.2 to 8.6 per cent. The 1991 Census figures indicate that 8.5 per cent of older people are living in non private households. Because the Census focuses on where the person is on the night of the Census rather than their permanent residence and because the definition of non-private household includes boarding houses, hotels, guest houses and acute hospitals, the Census figure for the numbers living in non-private households would tend to over-estimate the number of older people actually resident on a long-term basis in residential care. However, the Census data from 1966 to 1991 does not indicate any trend away from residential care.
For the purposes of the projections above, it was assumed that 95 per cent of older people and 97 per cent of people between the age of 18 and 64 live in the community. If the policy of encouraging the level of community care actually increased this proportion, this would result in an increased demand for carers. On the contrary, if the recent policies of encouraging the development of private and voluntary nursing homes and the provision of subventions for nursing homes, resulted in a decrease in the proportion of older people and people with disabilities living in the community then this would decrease the demand for carers. This emphasises the importance of a clear policy in relation an integrated package of care including a policy as to the balance between residential and community care in order to provide a context for a long-term support framework for carers.
2. Medical Developments:
Developments in medical knowledge may also affect the demand for carers. However, the likely direction of such trends is unclear. On the one hand, medical developments may allow people to be fitter and healthier in their old age and, in the case of people with disabilities, may remove the impairment which in part creates the disability.3 On the other hand, it is possible that medical developments will allow people to live longer but that these people will have greater needs for care. Therefore, it is not possible to predict the affect which medical developments may have on the incidence of care needs.
3. Household Structure:
A further issue, which may affect the incidence of care need, is the type of household in which older people and people with disabilities live. There has been a long-term tendency towards an increase in the number of older people living alone (from 11 per cent in 1966 to 24 per cent in 1991). The projections prepared for the National Council for the Elderly suggest that the number of older people living alone will continue to grow, albeit modestly, to 26 per cent by 2011. There has also been an increase in the proportion of older couples living alone without any children in the same household. The fact that more older people are living alone or in households without any younger family members may tend to increase the need for care and will also change the type of care which is needed. Where, previously, care could have been provided on an informal basis by a household member, more formal arrangements may have to be made with persons living in a different household to provide care. The fact that the carer is living in a different household may also increase costs both for the carer and for the person cared for (for example, in relation to travel, telephone, etc.).
On the other hand, due to the very high non-marriage rate in Ireland throughout much of this century, many older people have not had any immediate family (i.e. spouse or children). Because of the sharp increase in the marriage rate in the 1960s and 1970s, it is more likely that people reaching the age of 65 in the coming 15 years will, in fact, have surviving close relatives, even if, in the case of children, these are not necessarily living in the same household.
It is important to note that the need for care does not simply arise from a person’s medical condition or disability. Rather it is a function of their surrounding environment. It is clear from the studies which have been carried out that many of the tasks involved in caring are simple ones involving assisting people in getting around the house and in getting up and down stairs. Improvements in housing design and the development of lifetime adaptable housing could reduce the need for care in this area. The development of policies in this area in relation to people with disabilities is currently under consideration by the Commission on the Status of People with Disabilities.
Another factor which has the potential of reducing the demand for care is the development of assistive technology. Assistive technology can range from very simple items, such as grab handles, to state-of-the-art computer technology. There have been very important developments in technology in recent years and it is likely that these will continue in the period up to the year 2011. The development and availability of such technology has a very important potential to assist older people and people with disabilities in doing routine things around the home and in enhancing their independence and thereby reducing the need for care.
The income of people with disabilities has increased significantly over the last twenty years or so (Fahey and Murray, 1994). If the income available to older people and people with disabilities was to increase in the coming decades, this would tend to facilitate them in buying in care thereby reducing the need for informal care. In the absence of specific policies in this regard, however, and given the costs involved in private care, it is unlikely that any such increases would make a significant difference to the level of informal care needed.
7. Attitudes to Care:
It must also be remembered that the need for care is a somewhat subjective matter. One person may feel a need for care in circumstances where another would not. It is possible that attitudes amongst older people and people with disabilities to informal care by family members may change over the next fifteen years. On the one hand, given general improvements in living conditions and the projected increased economic prosperity, people may have an increasing expectation that they will be cared for in old age or when affected by disability. On the other hand, given the decline in tightly knit family structures, people may expect less support from family members. Given tendencies towards an increased individualisation of society, some older people and people with disabilities may increasingly want to manage for themselves without having to call on members of their family or others.4 Again it is effectively impossible to predict how these changing attitudes may affect the demand for care.
It is also obvious that demand for care (in the sense in which we are talking about it here) will be affected by the availability of a supply of carers. It is to this issue which we now turn.
3. The Future Supply of Carers:
While it is possible to make tentative projections as to likely trends in terms of the demand for care, it is much more difficult to produce any detailed long-term estimates of the possible supply of carers. All that can really be done in this area is to point to tendencies which are likely to affect the existing supply of carers. The difficulties involved in making labour force projections are highlighted by the fact that while the Central Statistics Office provides population projections up to the year 2026, because of the additional uncertainties involved, the labour force projections are restricted to the period to 2006 (Central Statistics Office, 1995, p. 17). For that reason, no detailed projections as to the potential supply of carers will be attempted here.
Referring to the fact that caring is normally done by older women, O’Shea (1993) has suggested that the ratio of women in the age group 45 to 69 to persons over the age of 70 is a useful indicator of the “caretaker potential” within the family system (1993, p.65). O’Shea points out that the ratio in Ireland has been declining slowly since 1926, falling to 1.4 in 1991. The ratio is projected to rise to 1.9 by the year 2011 because of the fact that the aging of the population will mean that there are an increased number of women in the 45 to 69 age group. It will decline again after that year. However, this is a rough measure and provides limited assistance in projecting the potential supply of carers.
Firstly, this calculation ignores the potential role of men and younger persons in providing care. It is arguable that a major aim of social policy should be to broaden out the potential supply of carers so as to encourage men and younger persons to play a role in caring for older people and people with disabilities. Given the projected decline in fertility rates, men and women of working age will have fewer children and, arguably, will have more time to care for parents and other family members.
Secondly, such an index of “caretaker potential” takes no account of the projected increase in the labour force participation rates of married women in coming years. It is clear that in the last twenty years or more, the participation rate of married women in paid work outside the family home has increased sharply (although the precise extent of the increase is a matter of debate). All the labour force projections available assume a continuing increase in the labour force participation rates of married women in the 20 to 59 age group (Central Statistics Office, 1995; Cantillon et al., 1994). The precise level of the increase in labour force participation and the extent to which this will result in actual employment (as opposed to unemployment) is highly speculative. What is clear is that if recent trends continue, it is likely that many married women who currently form part of the potential supply of carers will be in the paid labour force and that, therefore, the potential supply of carers will be reduced or restricted.
Another factor which may have an important impact on the potential supply of carers is peoples’ attitudes to providing care. This may be affected by the closeness of inter-generational relationships in the years to come and by potential carers’ willingness to be involved in giving care (Salvage, 1995).
A further factor which has been discussed in terms of its influence on the ability to provide care is divorce and remarriage (Salvage, 1995, p.38). It is, however, probably too early to discuss the potential impact of divorce in Ireland.
In summary then, it is not possible to provide any detailed estimates as to the potential supply of carers. A crude comparison of the number of older women (45 to 69) who currently make up a significant proportion of carers with the number of people aged over 70 (who currently make up a significant proportion of people requiring care) indicates that up to the year 2011 the proportion of potential carers will increase. However, it is likely that a significant number of these women will be participating in the paid labour force and this gives rise to a range of issues in relation to the ability to reconcile work and caring responsibilities which are discussed in more detail in Chapters IV and V. A further key issue is peoples’ willingness to provide care. It is very likely that this will be influenced by government policy in this regard and by the extent of support for carers. This is again discussed in Chapters IV and V. It is, however, important to note that people will be available to provide care in the period up to 2011 and it a question of whether or not social policy can enable, encourage and support people to do so.
CHAPTER III: THE EXISTING SUPPORT FRAMEWORK FOR CARERS
In this chapter we look at the range of support services which currently exist for carers of older people and people with disabilities. In particular, this chapter considers (1) the social welfare and tax benefits available to carers; (2) the support services provided directly to carers, mainly by voluntary organisations; and (3) the range of community care services provided to older people, people with disabilities and carers by or under the auspices of the regional Health Boards. In relation to the last of these three categories, in many cases the services are provided to the person cared for rather than for the benefit of the carer. They are, however, of relevance to the carer and are included here. There are also a range of other services provided directly to the person cared for including hospital care, dental services, institutional care and so on which may also have indirect relevance to the carer but which fall outside the terms of reference of this study.
In each case, the level of existing services is described and this is followed by a commentary on the extent to which services meet the perceived need. Issues in relation to the development of services are discussed in the next chapter.
1. Social Welfare and Tax Benefits
The main payment for carers is the means tested carer’s allowance, payable by the Department of Social Welfare. This was introduced in 1990 to replace the prescribed relative’s allowance (Cousins, 1995).1 Unlike the prescribed relative’s allowance which was payable to the person cared for, the carer’s allowance is paid directly to the carer.
Carer’s allowance is payable to a person who resides with and provides full-time care for a pensioner over the age of 652 or over 65 and in receipt of retirement pension or under 66 and in receipt of long-term invalidity or blind payments. The allowance is subject to a strict means test and the carer is only allowed to earn £6 per week him or herself before the level of the carer’s allowance will be reduced. An earnings disregard in respect of a carer’s spouse’s income from work was introduced in 1994 at a level of £100 per week. In 1995 this was extended to all types of income (e.g. pensions) and was raised to £150 per week. The means of the claimant are to include such amount as the person cared for “could reasonably be expected to contribute”. However, no account can be taken of any social welfare payments and, in fact, it appears that this provision is not applied in practice.
The carer, who must be eighteen years or over, must not be engaged in employment or self-employment outside the home. A person who is in receipt of another social welfare payment or in respect of whom an adult dependant increase is being paid is not entitled to the carer’s allowance.
The allowance is only payable where the pensioner requires “full-time care and attention”. This is taken to apply only where the person is so disabled or invalided that he or she requires from another person (i) continual supervision in order to avoid danger to him or herself; or (ii) continual supervision and frequent assistance throughout the day in connection with normal bodily functions; and (iii) the person is so disabled or invalided as to be likely to require full-time care and attention for a period of at least twelve months.
The then Minister for Social Welfare, Michael Woods, TD, when introducing the legislation, stated that the aims of the new scheme were to “give official recognition to the role of carer”, to provide “a secure and independent source of income” while ensuring that resources are directed at those who need them most (397 Dáil Debates 755, 757 and 1042).
At the time when the carer’s allowance was introduced in 1990 it was set at a rate of £45. In the period since then it has been increased at a rate much higher than general social welfare increases and in 1996 the rate payable in respect of an individual person is £67.50 per week. No payment is made in respect of adult dependants and payment of £13.20 per week are payable in respect of child dependants (if any).
The take up of the carer’s allowance has been much lower than anticipated. The Department of Social Welfare originally estimated that over 8,000 carers would be entitled to the payment. However, despite the fact that the qualification conditions have been relaxed on a number of occasions, by the end of 1994 only just over 5,000 persons were in receipt of the payment (Department of Social Welfare, 1995). This has increased to 7,360 by 1 May 1996. In line with the general information available about carers, 77 per cent of recipients of the carer’s allowance are women. However, the carer’s allowance is heavily concentrated on carers in the 40 to 64 age group (76 per cent). Only 5 per cent of payments go to people aged 65 and over. This suggests that older carers are themselves likely to be in receipt of an old age pension (or persons in respect of whom an adult dependant increase is in payment) and, therefore, ineligible for carer’s allowance. No information is available as to the age of persons being cared for but it seems likely that the carer’s allowance is largely concentrated on older persons who require care.
The carer’s allowance has been criticised on the basis of the restrictive qualification conditions and the stringent means test. The interpretation by the Department of Social Welfare of the term “full-time care” has also been criticised and it has been suggested that the Department’s interpretation requires care greatly in excess of 40 hours per week.
Domiciliary Care Allowance:
In 1973 a scheme of allowances for domiciliary care of severely handicapped children was introduced by the Department of Health. The scheme was aimed at children with severe mental or physical disability who were living at home and who required constant care. It was “designed to alleviate, in some measure, the additional burdens created by the retention of such children in the home” (Department of Health circular 24/73). The scheme is operated under Section 61 of the Health Act, 1970, which enables arrangements to assist in the maintenance at home of sick or infirm persons or persons who would otherwise require institutional care.
The scheme applies to children between the ages of 2 (children below the age of 2 are assumed to require constant care and attention in any event) and the age of 16 who “require from another person constant care or supervision, i.e. continual or continuous care or supervision substantially greater than that which would normally be required by a child of the same age and sex”. The scheme is intended to apply to long-term care needs only, i.e. those which are likely to continue for at least one year and is not intended to apply to care needs which only intermittently or infrequently arise.
The care may be provided by the parent or parents or by another person or persons. The allowance is normally to be paid to the mother of the child but may be paid to the father or to the person who is actually caring for the child. Only the means of the child are taken into account in determining eligibility. In this context, means include payments of compensation for injuries or disabilities (although some specific compensation amounts are excluded). The payment was originally set at a rate of £25 per month and is currently payable at a rate of £100.60 per month. In 1994 there were almost 7,900 children in respect of whom domiciliary care allowance was payable.
The scheme has been criticised on the basis of the comparatively low level of the payment, on the exclusion of children below the age of 2 as some children with disabilities below that age do, in fact, require significantly greater degrees of care, and on the basis that children who are in residential accommodation (e.g. schools) for a large proportion of the year but who are also at home for a significant proportion are generally not entitled to domiciliary care allowance.
Constant Attendance Allowance:
A constant attendance allowance is payable to a person who, as a result of an occupational accident or disease, is suffering from 100 per cent disablement and who, as a result requires “constant attendance”. This payment forms part of the occupational injuries scheme operated by the Department of Social Welfare and introduced in 1967. A weekly payment (currently £35.80) is made to a person who “is to a substantial extent dependent on [constant] attendance for the necessities of life and is likely to remain so dependent for a period of not less than six months” where such attendance is required “whole-time”. Benefit is paid at a reduced rate where constant attendance is required on a part-time basis while an increased rate is paid where greater attendance is required because of “exceptionally severe disablement”. Finally, twice the standard rate is paid where the person is “so exceptionally severely disabled as to be entirely or almost entirely dependent on such attendance for the necessities of life” where this condition is likely to last for at least six months and where attendance is required whole-time. Figures for the numbers in receipt of this payment are not published by the Department of Social Welfare but given that only around 200 people suffer from 100 per cent disablement, the numbers in receipt of the constant attendance allowance are obviously quite low. The 1996 Social Welfare Act allows the Minister for Social Welfare to provide for the payment of constant attendance allowance in cases where the degree of a disablement is assessed at less than 100 per cent. It is anticipated that the amount of the increase payable in such circumstances will be less than the amount payable where the disablement is assessed at 100 per cent and the rate may vary in relation to the degree of disablement.
There is one tax allowance which is specifically targeted at persons who require care and attention. This provides an allowance of up to £7,500 towards the employment of a person to provide care and attention (Section 3 of the Finance Act, 1969). The amount of the allowance was increased to this level in 1996. Only about 400 persons avail of this allowance and the estimates of tax expenditure costs which are produced by the Revenue Commissioners give the cost of the allowance in the year 1992-93 as only £200,000 indicating that most people do not, in fact, benefit from the full allowance. There are also general tax allowances in respect of incapacitated children and of dependent adult relatives but these are not specifically linked to caring costs and the levels of the allowance are quite low.
Carers and Pension Entitlements:
In order to qualify for a contributory old age or retirement pension, one must have a record of a certain number of paid or credited contributions under the social insurance scheme. Persons in receipt of the carer’s allowance may, in some cases, receive credited contributions. Many persons who have been out of the labour force for many years, particularly married women, due to caring responsibilities, find it difficult to qualify for the pension because their absence from the labour force means that they have a gap in their contribution record. In 1994 the Minister for Social Welfare introduced a “Home Makers” scheme which allows contribution years spent working in the home on a full-time basis caring for a child or an incapacitated person to be disregarded when calculating a person’s yearly average number of contributions for the purpose of the old age contributory pension. This provision goes some way towards assisting carers in qualifying for such a pension.
2. Services Provided Directly to Carers
This section looks at the range of services which are provided directly to carers, mainly by voluntary organisations including the Carer’s Association and the Soroptimists International. It draws in particular on a study of support services for carers of older people carried out in 1992 and published by the National Council for the Elderly (Finucane et al., 1994) and on information provided to the Joint Oireachtas Committee by the Soroptimist International and the Carer’s Association (Ruddle, 1994; Carer’s Association, 1995).
It should be noted that the National Council for the Elderly survey focused on carers of older people and that no comparable study has been carried out in relation to carers of adults and children with disabilities. The National Council for the Elderly study identified the development of a number of carer’s groups throughout the country, although concentrated in particular in Leinster and Munster. The authors of the report suggested that carer’s groups are relatively thin on the ground. The study indicated that carer’s groups in general are small with a small number of members. The majority of groups have carers among their members and the majority of members provide support to carers of older people. The carer’s groups tended to meet regularly, at least monthly. The groups provided a range of supports to carers including information, practical problem solving, training, emotional support, therapeutic counselling and guidance, recreational and entertainment activities, and educational lectures on health care.
The majority of groups in the study received no funding and the maximum received by any group was £10,000 per annum. The primary source of funding was from statutory bodies. Most groups were involved in fund raising which generated relatively small amounts of money. It would appear that the major input into the group’s activities came from the voluntary contribution of the members’ time.
The range of services and activities provided by the carer’s groups included giving information on statutory services to carers, giving information on grants and entitlements, giving training on physical care of older people, supplying a sitting service to carers, supplying a shopping service, supplying help in the home when necessary, liaising with statutory bodies on behalf of carers, giving counselling, providing legal and financial advice, supplying and organising respite care, organising transport, organising holidays and outings for carers, lobbying TDs on behalf of carers, organising lectures by health care professionals, and providing a drop-in social service. The study found that these services are vital to maintaining carers in good health and are critical to their wellbeing. However, these services were not being provided by statutory bodies.
The study found that the groups were severely limited in what they could supply because of the lack of adequate funding. Many groups in the study expressed the view that they could and would supply greater services if they had more resources.
More recent information in relation to services available to carers has been provided by the Carer’s Association and the Soroptimists International. The Carer’s Association is a national voluntary organisation representing the interests of Ireland’s carers in the home. It has a national office in Dublin, three association offices in Dublin and association offices in Tullamore, Portlaoise, Waterford and Tralee. The Association provides a range of services to carers including a national care line (a telephone help line for carers), education and training for carers and people working with carers, information and advisory services, counselling and support, a respite home care service for short breaks for carers, and home care assistance for carers under long-term stress. The Association also produces education and information packs for carers, teaching hospitals, students and professionals and produces videos and promotional materials. The Association publicises issues of concern to carers, organises conferences and seminars, lobbies government departments and prepares an annual Pre-Budget Submission. The organisation also helps carers to form themselves into care support groups and publicises issues in relation to carers through its quarterly journal “Take Care!” and through the Carers of the Year Awards.
The Soroptimist International established a Caring for Carers Programme in 1989. In 1991 in conjunction with Professor Joyce O’Connor of the National College of Industrial Relations, the organisation established a Carer’s Charter (see Appendix 2). Following on the launch of the Charter, the organisation, in conjunction with the Department of Social Welfare and the Mid-Western Health Board, established a Carer’s Charter in Action Pilot Project in the Mid-Western Health Board area in 1993. One of the main features of the project was the appointment of a Development Officer to identify the needs of carers in the area and to organise and develop means of addressing these needs. A very wide range of activities have been carried out in the course of the project including education and training for carers, training and caring for the sick, therapeutic hand care, a personal development course, the provision of information (including an information booklet on contacts for carers and their dependants in Co. Clare), the development of carer’s groups, advocacy services, respite care, and the promotion of the recognition of the central role of carers in the provision of community care. An evaluation of the project (Ruddle, 1994) found that feedback from carers gave strong support to the services provided in the pilot project. Carers revealed very positive responses to the range of services provided and reported that they had derived many and wide ranging benefits from them, including social support, relaxation, information, recognition, greater morale and increased sense of self worth.
The three key issues identified from this project have been the appointment of a development officer, the provision of education and training courses which help to provide both training and social contact for carers, and the provision of respite care. Most recently the project has advertised for volunteer carers in the community and have received a very positive response. These volunteers are to be provided with training and, in conjunction with public health nurses, will be put in contact with carers. They will provide general assistance to carers including short-term respite care.
In 1995 the organisation carried out a study of carer’s needs in Co. Clare (Soroptimist International, 1995). This involved a detailed survey of the needs of carers in the area and put forward a range of recommendations for the improvement of services.
In terms of the funding available to carer’s groups, one important initiative was the establishment by the Department of Social Welfare of a respite care fund in 1993. Responsibility for this fund was transferred to the Department of Health in 1995. Voluntary organisations have reported that considerable difficulties and delays in receiving funding have arisen in relation to the transfer to the Department of Health and the Health Boards. It is not clear whether this is simply an initial problem or whether such problems may continue.
3. Community Care Services Relevant to Carers
This section looks at the range of community care services provided, generally by or under the auspices of the regional Health Boards, to carers, older people and people with disabilities. In general, the services are provided to the older person or the person with the disability and not to the carer. In some cases, we will see that the presence of a carer may, in fact, lead to the reduction or withdrawal of a service. These services are, however, of a critical importance in providing support for carers and are considered in detail in this section.
This section of the report draws on the study published by the National Council for the Elderly (Finucane et al., 1994) which has been referred to in the previous section and also on a study of the Home Help service carried out - again by the National Council for the Elderly - in 1993 to 1994 (Lundström and McKeown, 1994). There are also a further range of services provided to older people and people with disabilities, such as hospital services, residential care, housing, dental treatment, etc., which may be of indirect relevance to carers. These further range of services are, however, outside the scope of this report and are not considered here.
General Practitioner Services:
The services of general practitioners are provided free of charge to medical card holders under the Health Acts. The National Council for the Elderly study found that there is one GP in the choice of doctor scheme to every 250 older people. This ratio varied only slightly from Health Board to Health Board. The report stated that this ratio would appear to suggest that older people and carers should be able to access GP services easily and that access did not usually involve referral or a waiting list. O’Connor and Ruddle’s (1988) study of carers found that 80 per cent of older people had had the services of their GP in the previous six months. They found that carers with experience of the GP service found it satisfactory and most believed that visits were frequent enough and long enough (1988, p. 121). This study found that the majority of carers believed that their needs were being met in relation to their physical (74 per cent) and emotional (68 per cent) health. A further study of carers of persons with dementia and Alzheimer’s disease found that 77 per cent of older persons had had a visit from a GP within the last six months and 60 per cent of younger persons (under the age of 65) had also received a visit from a GP in this period (Ruddle and O’Connor, 1993). However, 14 per cent of respondents in this survey expressed a need for more help from their GP and/or the public health nurse and a study published by the ESRI also indicated that 20 per cent of all respondents in that survey referred to the need for more GP support (Blackwell et al., 1992).
In summary, it would appear that the GP service is generally reasonably accessible but that a minority of carers feel a need for more GP support.
Public Health Nurses:
Under Section 60 of the Health Act, 1970, Health Boards are obliged to provide a nursing service to persons with a medical card and such other groups as the Minister for Health may specify. This service is provided by public health nurses. Services range from the provision of information and advice to the nursing of very dependent persons.
The National Council for the Elderly study found that there was one full-time equivalent public health nurse to every 291 older persons on average. These ratios varied to some extent from one Health Board to another. A range of nursing services and aids are provided in conjunction with the public health nurse service. These include home nursing aids, special lifting aids, special toilet aids, special beds, training to the carer in lifting, bathing and toileting skills, bathing and toileting, continence advice, incontinence pads and pants. In most community care areas, the study found that these services were provided by the public health nurse although occupational therapists also played a role in some areas. The extent to which these services were available free or partially free for persons on the medical card varied from Health Board to Health Board. In some Health Boards special nursing services such as night nursing, day nursing, weekend nursing and twilight nursing were also available but again this varied from area to area.
Access to public health nurses was direct and there was no waiting list for the service in 85 per cent of community care areas. The study found that the presence of a carer could have a negative effect on the nursing services delivered with the public health nurses reducing the service they provide if a carer is present. This occurred in about 20 per cent of community care areas. O’Connor and Ruddle’s (1988) study found that less than half of older persons had had a visit from a public nurse in the previous six months. Ninety six per cent. of carers who had experience of the service found that visits greatly relieved the burden of caring. The study of Alzheimer’s carers found that 73 per cent of older persons had received a visit in the previous six months as had 46 per cent of younger persons (Ruddle and O’Connor, 1993). As we have seen, 14 per cent of these respondents expressed a need for more help from the GP and/or the public health nurse. The ESRI study also found that 31 per cent of respondents expressed a need for more public nurse support (Blackwell et al. 1992, p. 214).
It would appear that again the public health nurse service is reasonably accessible but that the range of services provided varies greatly from area to area and that specialist services such as twilight nursing are not available in many areas.
Other Community Care Services:
The National Council for the Elderly study also looked at the availability of other professional services such as occupational therapists, physiotherapists, chiropodists and social workers. The study found that there was considerable variation in the level of service provision from one Health Board area to another. The study found that waiting lists operate in most community care areas for occupational therapists and in many for physiotherapists. Waiting lists also occurred in relation to access to social workers and chiropodists although detailed information was not always available. The study reported that, in general, the role of the carer and the carer’s health were not perceived as important components in decisions about how older people should be treated with regard to the provision of the services.
Studies of carers found that only a minority had received the services of occupational therapists, physiotherapists, chiropodists or social workers in the previous six months. In the ESRI study 39 per cent of respondents expressed a need for more support from chiropodists, physiotherapists and other professionals in this area (Blackwell et al., 1992).
In summary it appears that services are quite restricted in many areas with considerable waiting lists.
Home Help Services:
Section 61 of the Health Act 1970 provides that a Health Board may make arrangements to assist in the maintenance at home of sick or infirm persons (and their dependants) and persons who would otherwise require to be maintained in residential accommodation. The home help service is provided either by Health Boards or by voluntary organisations on behalf of the Health Boards. Home helps assist with normal household tasks.
The National Council for the Elderly study of Home Help Services for Older People (Lundström and McKeown, 1994) found that there were six different models of service provision within and between the different Health Boards and that no national standards of service provision were in place. It found that current eligibility for service and assessment for financial contributions were not standardised and that there were several methods of collecting such contributions. Overall the national percentage of older people in receipt of the home help service was low. In many areas the study found that there were no back up or relief home helps and that this was a serious flaw in service provision. Nor was there any formal mechanism for processing complaints should these arise. On the positive side, however, the study found that the service was highly valued by the clients who received it and that the number of hours of home help older persons received was much greater than in other countries. The National Council for the Elderly study of Support Services for Carers found that in 50 per cent of community care areas only partial home help service is given if there is a carer present and that service is not provided at all in 8 per cent of community care areas if a carer is present in the home.
Detailed studies of carers again indicate that only a small minority of older people received a visit from home helps within the past six months. In the study of carers of Alzheimer’s patients, 19 per cent expressed a need for more home help services (Ruddle and O’Connor, 1993).
It should be noted that the above studies all relate to the position of carers of older persons. It is estimated that over 80 per cent of the 17,000 recipients of home help services are older people and that only about 1,800 persons under 65 years with disability receive assistance from the home help service.
As part of this research project, information was sought from the Health Boards as to the operation of the home help services in their areas and responses have been received from six Boards. These indicate that the level of payment for home helps varies enormously from area to area, ranging from up to £5.43 per hour for full-time home helps in the North Western and Western Health Boards to a contribution of £1 per hour for part-time home helps in the Western Health Board. The responses confirmed that the extent to which services are provided and the criteria on which services are granted and charges are made varies considerably from area to area.
In summary, while the home help services are highly valued where they are available, it appears that many older people do not have access and that very few people with disabilities have access to such services. The presence of a carer is likely to curtail or prevent the provision of services.
Support Services for People with Disabilities:
A number of specific support services are provided for people with disabilities by voluntary organisations. A number of voluntary organisation provide home care assistant schemes, with financial support in some cases from Health Boards. This service is aimed at providing temporary respite to the carer by providing a trained care attendant to meet the needs of the person with a disability. It includes care at night and at weekends. It is estimated that about 270 people currently avail of this service. A recent development, pioneered by the Centre for Independent Living, is the employment of personal assistants by people with disabilities to enable them to live independently. An Advisory Group on Personal Assistant Services has proposed the development of services for 200 people with disabilities.
The provision of meals services, generally by voluntary organisations, varies considerably from one Health Board area to another (Finucane et al., 1994). Access to meals services is generally by referral and no waiting list operates for this service in the majority of community care areas. Older persons may be asked to contribute towards the cost of this service and this can vary from £1 to £5. Again, the presence of a carer generally had a negative impact on decisions to provide this service. The studies of carers indicate that a very small proportion of older persons received the meals service.
Day care services include centres which provide day activation such as recreational, sport and leisure facilities and specialised clinic facilities involving a combination of medical/recreational rehabilitation services. The first type of centre is operated throughout the country with centres being funded by Health Boards and voluntary organisations. Access is generally by referral and no waiting list operates in almost 60 per cent of community care areas. The second type of day centre (i.e. involving medical needs) is only available in approximately half of all community care areas. The study of Alzheimer’s patients indicated that over half had access to day care centres (Ruddle and O’Connor, 1993). Twelve per cent of these respondents expressed a need for such a service as did 36 per cent of respondents in the ESRI study (Blackwell et al., 1992).
The National Council for the Elderly study looked at transport services, including access to day hospitals and day centres, to out patient departments and other hospital services. Transport has been recognised as a crucial issue for older people and people with disabilities. It found that transport was available in only a minority of cases and that the extent of services varied from one area to another.
Respite care involves temporary care, either community or centre based, which provides relief and personal development opportunities for the carers and the person requiring care within a variety of facilities. The need for care ranges from crisis intervention to planned regular breaks. Unfortunately, the availability of respite care was not considered in the National Council for the Elderly studies.
The detailed studies of carers indicate a serious lack of respite care. O’Connor and Ruddle’s study (1988, p. 144) indicated that over 80 per cent of carers had not had a holiday in the year prior to interview. Where carers did have a respite it was generally members of family who took over the caring role. This study reported that short-term relief care was available to less than 10 per cent of all carers. It appears that the situation may have improved somewhat in that the more recent study of carers of Alzheimer’s patients indicated that 24 per cent of respondents reported that relief care was available and 39 per cent reported that short stay residential care was available (Ruddle and O’Connor, 1993). However, these services are still clearly inadequate and 60 per cent of respondents in that study noted a need for regular short-term respite care as did 36 per cent of respondents in the ESRI study (Blackwell et al., 1992).
Overall Levels of Support:
O’Connor and Ruddle’s study (1988, p. 127) found that overall the level of formal assistance to carers was typically minimal. They reported that 23 per cent of carers received a medium level of services (i.e. receiving the help of four services and getting advice from four sources) but almost 70 per cent received low levels of support with 8 per cent receiving no support at all. In this study only one carer received a high level of support. There is no indication that the position had improved significantly by the time the later study on Alzheimer’s patients was carried out (Ruddle and O’Connor, 1993, p. 116). Again, the vast majority of carers (87 per cent) received low levels of support with 10 per cent receiving no support at all and only 3 per cent receiving a medium level of service.
The failure to develop appropriate levels of community care has been recognised in the Health Strategy which identified one of the key weaknesses in the health services as the fact that community-based services were not developed to the extent that they can appropriately complement and substitute for institutional care, or provide adequately for those in the community who are dependent on support (Department of Health, 1994, p. 10). O’Connor’s (1987) study of community care services carried out for the National Economic and Social Council (NESC) criticised the fact that services were generally substitutional, i.e. only coming into effect when family supports did not exist or had broken down, rather than complementary, i.e. helping to support informal networks. The range of studies in relation to support services for carers would indicate that, despite the recommendation of the NESC that services should be provided on a complementary basis, this position remains largely the same in 1996 and that community care services still do not play a complementary role in supporting carers.
CHAPTER IV: KEY ISSUES IN THE ESTABLISHMENT OF A LONG-TERM SUPPORT FRAMEWORK
In the light of the existing situation in relation to carers, the demographic projections set out in Chapter II and the description of the existing support framework set out in Chapter III, a number of key issues arise in relation to the development of a long-term support framework for carers. These questions are addressed in this chapter. We look firstly at the need for an overall government policy in relation to care provision. Secondly, we examine issues in relation to resourcing and funding of care. Thirdly, we look at a range of issues concerning measures to reduce the need for care. Fourthly, we examine measures which can help to improve the supply of carers, in particular, measures to reconcile work and family responsibilities. Finally, this chapter considers a range of measures needed to provide support for informal carers.
This chapter draws on the recommendations which have been set out in a range of national and European reports which are referred to in the bibliography.
1. A Policy on Caring:
There is a clear need for a government policy statement on care provision over the next ten to fifteen years including a programme for the implementation of the policy. At present, there are a number of statements of support for community care in official government policy documents (e.g. the Years Ahead report and the Health Strategy). However, in many cases the concept of community care is ill-defined (see O’Connor, 1987). Is care supposed to be provided by the community (i.e. by family and friends of the person concerned), is care to be provided in the community by public services, or is there to be some balance between the two? These questions have not been clearly answered. Secondly, despite the rhetoric of support for community care, there has not been a financial commitment by the government to make care in the community a reality. For example, in relation to older persons, it appears that the number of older people in institutional care has remained more or less static since the 1960s. All these factors highlight the need for a clear government statement on the provision of care and on exactly how and by whom care is to be provided and funded. Accordingly, it is recommended that the relevant Government Departments (in particular the Departments of Health and Social Welfare) should publish a White Paper on care provision over the next ten to fifteen years, drawing on the Carers Charter (see Appendix II) and on already published reports such as the Years Ahead the Health Strategy and forthcoming publications from the Commission on the Status of People with Disabilities and the Review Group on Services for People with Physical and Sensory Disabilities.
There is widespread support in Ireland for the concept of community care. People (both those who require care and those who may be called on to provide care) clearly prefer the idea that people should be cared for in the community rather than in institutional care, where this is possible. It is also clear from the range of studies which have been carried out in Ireland that people are generally supportive of the notion that care should be provided by the community (i.e. by family and friends) with the support of other services rather than the care being provided primarily by paid public services. Thus government should set out a commitment to the provision, to the maximum extent possible, of care in the community and by the community. In order for this approach to be successful, it is essential that policy should also address the issue as to how carers are to be supported. At present, we have seen that community care is still primarily substitutional rather than complimentary in character. In other words, community care services tend to intervene where family care has broken down or cannot be provided rather than acting to support informal care. This may seem a sensible policy in the short-term as it focuses provision on those most in need. However, in the longer term it runs the risk of undermining the whole provision of informal caring and of increasing the level of institutional care required. Indeed, these effects can already be seen in the Irish context where studies have indicated that many older people in institutional care are there because of a lack of social support rather than because of any objective health or disability factors.
A policy for supporting carers needs to address four key issues:
1.How should care by funded and resourced?
2.How can care needs be reduced?
3.How can the supply of informal carers be increased?
4.How can appropriate supports be provided to carers in the community?
These issues are addressed in subsequent sections of this chapter.
2. Funding and Resourcing Community Care:
A key issue which must be addressed is the funding and resourcing of community care. It is often stated that community care is much cheaper than institutional care. However, this is only true insofar as it relates to direct public expenditure. Costs also vary depending on the levels of care required. A study carried out by Blackwell et al (1992) costed both institutional care in four hospitals and care in the community by informal carers. The cost of the care in the community included the cost to the carer of the time spent in providing care. The time of the carer was costed at a low value (£1.21 per hour) which took account of the age and lack of educational and occupational skills of many carers. At this level of labour cost and at low levels of dependency, informal care in the home was generally at about the same level of cost as in three of the four hospitals surveyed. This picture changed as the level of dependency increased and, at the highest levels of dependency, hospital care was more expensive in all cases. When a higher value for the carer’s time was used (£2.40 per hour), care in the home was generally more costly than institutional care and even at the highest levels of dependency it was of the same order as 3 of the 4 hospitals surveyed. This study emphasises the importance of recognising the value of the contribution of informal carers to the costs of overall care provision.
At present, community care for older people and people with disabilities is mainly resourced and funded through
i) the voluntary contributions of the services of carers and carer support groups,
ii) financial contributions from the persons requiring care and their families, and
iii) general taxation (out of which public health and social services and carers payments are mainly funded).
At present, there is no clear policy as to the desired balance between these different sources of funding. Even in relation to the provision of public health and social services, there are significant variations between the extent to which services are provided freely and to which persons are required to make a contribution. The Department of Health Health Strategy (1994, p. 36) has emphasised that
“it is inequitable that a person’s entitlement to a service should depend on the area in which he or she happens to live. National guidelines on eligibility and charges, which will be applied in a uniform manner in all areas, will be introduced in respect of all services where legislative provisions are at present absent. This development will form part of the reform of the basic framework of the health services and will be underpinned by the new legislation”.
In relation to the provision of care on a voluntary basis, it is important to emphasise that the detailed studies which have been carried out in Ireland suggest that care is not, in fact, provided by a network of family and friends but rather that one member of the family (generally a wife, daughter or daughter-in-law) is largely responsible for the provision of care with relatively little support from other persons. This would appear to be an inequitable distribution of responsibilities and it is recommended that government policy should focus on ways of broadening out caring responsibilities amongst other members of the family (and indeed the community generally). Practical ways in which this can be achieved are considered in section 4 of this chapter.
In relation to the provision of funding by the person requiring care and his or her family, alternative methods of facilitating such funding should be examined. At present, the availability of private health insurance in Ireland towards the cost of long-term community care is very limited. Nor is there any wide scale availability of what are known as ‘equity release schemes’. These are schemes whereby persons can realise the value of their home in order to generate a cash income while retaining residence in the home.1 Research in the United States of America suggests that private health insurance has only a limited role to play in relation to funding care provision (O’Shea and Hughes, 1994). Nonetheless, it is an option for some persons and measures to encourage the provision of such insurance should be considered. Given that recent studies indicate that over 80 per cent of older persons own their houses outright, equity release schemes clearly have a potential to provide some additional funding which could be utilised, amongst other things, to meet part of the costs of supporting community care (Blackwell, 1995). Again, research would suggest that these types of scheme will only have a relatively limited role to play in the Irish context but they could make a significant contribution for some people and measures to encourage the provision of such schemes should be considered.
In relation to the provision of public health and social services, as set out above these are funded primarily through general taxation. In several European countries, health services are funded primarily through social insurance contributions and the merits of such an approach have been advocated for the funding of long-term care for older persons in a report commissioned by the National Council for the Elderly (O’Shea and Hughes, 1994). There are, however, several potential disadvantages to such an approach. Firstly, there is the administrative difficulty that the Department responsible for social insurance, the Department of Social Welfare, is not involved in the provision of community care services while the Department of Health (which is responsible for these services) has no experience of the administration of a social insurance type system. Perhaps more importantly, there is the difficulty arising from the fact that the current political commitment to reducing social insurance charges on both employees and employers makes it difficult to envisage an increase in such charges in order to fund long-term care provision. Given that an overall policy decision has been made to fund health and social services by way of general taxation rather than through social insurance, it is perhaps likely that general taxation will continue to form the basis of funding for such services (Commission on Health Funding, 1989, p. 87 et seq.).
The National Council for the Elderly study set out a number of principles for funding care, i.e. that funding should be comprehensive; it should be determined by rather than determine care requirements; it should have a built in bias towards home care solutions; payments mechanisms should be prospective; case management should be used to determine needs; access should be on the basis of need and should not be impeded by inability to pay; and efficiency and quality of care should be enhanced rather than diminished by the financing system (O’Shea and Hughes, 1994, chapter 7). The manner in which these principles can be achieved in the public funding of care need to be addressed in the context of drawing up government policy in this area.
In overall terms, given the frequent references in the media to the “demographic time bomb”, it is perhaps worth making the point that in relation to the resourcing and funding of care provision over the next fifteen years, there is no demographic time bomb. As we have seen, the number of people in the existing primary care giving group (i.e. women in the age group 45 to 69) in comparison to to those particularly likely to need care (i.e. persons over the age of 70) is estimated to increase up to the year 2011. In other words there will, in theory, be more people available to provide care. In terms of funding services, the labour force projections available over the next ten years indicate that the proportion of people in the labour force to persons over the age of 65 will remain static or perhaps increase slightly in that period. In other words, there will be at least the same number of people in the labour force in proportion to the number of older people (Central Statistics Office, 1995; Cantillon et al., 1994). Given that it is predicted that Gross Domestic Product will increase considerably in the coming decade, this suggests that there should be more tax revenues available (without any necessity to increase the levels of taxation) potentially to fund support services for carers.
In summary, a key issue which needs to be addressed by the government is the source of resourcing of community care services. At present, as we have seen above, a disproportionate level of responsibility for resourcing care services rests on a comparatively small group of frequently elderly, predominantly female carers. This seems inequitable and it is recommended that the responsibility for resourcing care provision should be extended more widely both throughout the families of persons requiring care but also throughout the community generally. In this regard, the key question is not so much as to whether responsibility should lie with the carer/family or with the State but rather, since the State simply distributes taxation collected from the community generally, where the balance should lie amongst that community. In a context of childcare, it is sometimes argued that children are an economic good and that if people choose to have children then they should be expected to resource them and not to call on the State for additional support. Whatever the merits or demerits of this argument, it does not apply in relation to care provision. Nobody ‘chooses’ to have a friend or relative who needs care because of disability or old age. The need for care or the need to provide care is one which may affect any single one of us and which does so largely on an arbitrary basis. Care provision, therefore, is a classic example of an area in which public support is justified on the basis of community solidarity. This is not to say that public support should replace private and family care but rather that additional public funding to support informal care is justified on the basis of social justice.
3. Reducing the Need for Care:
There are a number of ways in which people’s need for care can be reduced and in which the personal autonomy of the individual can be enhanced. This can be described as a preventative approach to care provision (Salvage, 1995). A number of measures have already been identified in relation to older persons in the Years Ahead report and further proposals in relation to people with disabilities are anticipated in the forthcoming reports of the Review Group on Services for People with Physical and Sensory Disabilities and the Commission on the Status of People with Disabilities.
The health services have a key role to play in the development of preventative health care and health promotion programmes. This area has, indeed, been highlighted in the Department of Health Health Strategy document (1994, p.48).
The provision of accessible housing is also a key issue. It is clear from many of the detailed studies which have been carried out that caring tasks involve routine responsibilities such as helping people around the house and up and down stairs. The provision of more accessible housing can reduce the need for care in this area and can help people live more autonomous lives. Policies required in this area include the development of lifetime adaptable housing and the development of small sheltered housing schemes both by local authorities and voluntary organisations.
Assistive technology, which can range from simple items such as grab handles to extremely complicated computer technology, also has a key role to play in relation to supporting independent living. At present, there is a lack of any clear overall policy in this area and it is anticipated that the Commission on the Status of People with Disabilities will be making a number of recommendations in this regard.
It is recognised that the financial position of older people has improved significantly in the last two decades. It is be important that the financial position of older people and people with disabilities should be protected in the future. Insofar as their financial position improves, this may increase their ability to finance community care services themselves. However, given the general lack of significant resources of most older people and people with disabilities and the level of costs involved in providing community care, this contribution is unlikely to be very significant.
In summary then, there are a range of measures which can be taken which can help to both improve the lives of older people and people with disabilities and to reduce the need for informal care.
4. Increasing the Provision of Care:
At present, we have seen that care is predominantly carried out by older, female relatives of the person requiring care. While the overall numbers of this group will actually increase in coming years in comparison to the likely number of persons requiring care, there is a possibility that their availability to provide care will be reduced because of the increasing participation of married women in the paid labour force in Ireland. Government policy needs to respond to this development. At the same time, it is arguable that policy should aim to expand the number of persons responsible for caring to include men and younger women.
One key element in this area is the provision of support services, such as respite care, for such carers. This is considered in the next section. Another key issue is the provision of measures to reconcile work and family responsibilities. At present, there are very few such measures in the Irish employment and social welfare systems. However, important developments in this area have been made in other European countries and in the United States of America (Hoskins, 1993; Eleri Phillips, 1995).
Firstly, there is a need to introduce more flexible work forms generally (NESF, 1996; Fisher, 1996). The National Economic and Social Forum and the Employment Equality Agency have both recently published reports recommending the encouragement of more flexible forms of work, including part-time employment, job redistribution, flexi-time, working from home and job sharing. These general measures would have a range of benefits including a greater redistribution of employment and facilitating parents of young children to participate in employment in addition to their implications for care for older people and people with disabilities. In addition to these general measures, the report from the Employment Equality Agency and a recent report from the European Foundation for the Improvement of Living and Working Conditions have identified a number of specific measures which need to be put in place in order to facilitate persons caring for older people and people with disabilities.
The European Foundation report highlights a number of workplace initiatives which have been taken by employers in several European countries in response to the growing care needs of their staff. It argues that there are many economic reasons which justify employers in adopting this approach. These include the ability to recruit and retain quality staff, having more motivated and productive staff, reducing levels of employee’s stress, sick leave or absenteeism, and improving the reputation and image of the business. The European Foundation report gives examples of measures which have been introduced in several countries. For example, Barclays Bank in the UK introduced a responsibility break which allows staff with personal responsibilities for care needs to take a complete break from work or to work on a temporary part-time basis for up to six months. If the member of staff is unable to return to work after six months, permanent part-time work will be offered. If an employee has to resign, their name is placed on a reserve list for two years giving them priority for consideration for vacancies if they want to return to work within that time. Another example is Oxfordshire County Council in the UK which introduced a scheme to enable employees to work at home. Any job which can be done on this basis is assumed suitable for participation in this scheme. The costs involved are minimal. Some companies provide direct services to employees in relation to care giving including counselling, information, advice and referral, informal support groups at the workplace, and a direct service provision for care recipients. A further method of employer support is the provision of benefits such as long-term care insurance and compensation for lost income. In this regard, the report refers to Telecom Éireann which operates a scheme whereby up to 100 days per year can be taken with the cost of substitution being deduced from the staff member’s pay. This leave counts as service for seniority, pay and promotion. Telecom Éireann also offers special leave which caters for emergencies allowing staff leave in the event of an unforeseen illness or an immediate relative for up to five days.
A number of community based developments are also taking place. For example, in the UK a Help the Aged service is being provided by a voluntary organisation to provide information and referral services to employers. The intention of the service is to liaise, plan and provide a link between employers and service providers.
In summary, there are a range of initiatives which should be taken in this area to facilitate the reconciliation of work and family responsibilities. The government and, in particular, the Department of Enterprise and Employment should, in the context of the recommendations of the NESF report, look at overall policy measures to encourage flexible working arrangements. The Department of Enterprise and Employment and FÁS should ensure that persons who have been out of the work force due to caring responsibilities are entitled to obtain access to all employment and training schemes so as to facilitate a return to work.
In the context of the implementation of the EU Directive on Parental Leave, the government and Social Partners should consider ways in which employees can be allowed to reconcile work and family responsibilities through the provision of caring leave, employment breaks and sabbaticals, entitlements to return to work after care responsibilities and similar initiatives. The Social Partners should also negotiate in relation to the provision of in work benefits to carers such as the provision of information and advice, direct benefits and other services.
5. Supporting Carers:
In the proceeding sections of this chapter we have recommended that the aim of government policy should be to change from the existing situation where care is predominantly carried out by older, female carers who are not employed in the work force to a situation where caring responsibilities are shared more evenly amongst the family with more men and more younger persons being involved in caring and to a situation where carers are likely to be employed at least on a part-time basis. In this section we look at the need to put in place community services to support these carers while bearing in mind the need to provide support for those carers currently providing such services.
Direct Services by Voluntary Organisations:
We have seen in Chapter III that voluntary organisations provide a very important role in providing support to carers through the provision of carer support groups and a range of related services. The initiatives which have been carried out by the Carer’s Association and the Soroptimists show the potential for development in this area, in particular the Carer’s Charter in Action Project carried out by the Soroptimists in Co. Clare. There are two key recommendations in this area. Firstly, voluntary services should be much more closely integrated into and involved in the development of overall community care services along the lines of the approach adopted in the Soroptimist’s pilot project. Secondly, there is a need for significant additional funding to be provided to such organisations in order to help them to develop and to provide support for carers. It is clear from the range of studies which could be carried out that investment in this area would be a highly cost effective way of providing additional support to carers.
Community Care Services:
We have seen in chapter 3 that the range of community care services are quite varied from one area of the country to another. We have also seen that carers generally receive a relatively low level of support from such services.
The first need in relation to community care services is to ensure that carers (and the persons cared for) receive the package of services best suited to their needs and circumstances. A development officer for carers should be employed serving each community care area. One development officer could be employed in each Health Board on an initial pilot basis. This person should have a designated role of supporting carers, and helping to develop and coordinate services. The precise details of the employment of this person (e.g. employed by the Health Boards or employed within the voluntary sector but funded by Health Boards) and the precise extent of their role should be a matter for further discussion between the relevant parties and may vary somewhat from area to area.
Carers should also be much more involved in the planning and delivery of services. This recommendation is in line with the general thrust of public policy, for example, in the National Economic and Social Forum report on Quality Delivery of Social Services (NESF, 1995a). Several proposals have been made for the establishment of planning groups at a local level in relation to the delivery of Health Board services and the Health Strategy has proposed the establishment of advisory groups. Carers should be involved in these groups at the appropriate levels. The appointment of care development officers and the involvement of carers in the planning and delivery of services should help to identify the specific needs of carers in different community care areas.
A second priority is to improve the existing provision of community care services in line with identified need. Given the difficulty in identifying variations in need from area to area and given the anticipated change in need over the coming fifteen years, it is not proposed to set down minimum standards for service in this report. However, it is clear from the detailed reports which have been carried out that there are a number of priority services in which action needs to be taken. These include in particular:
1.The provision of respite care.
2.The provision of day centres.
3.The provision of public transport to services.
4.The improvement in and expansion of the home help service.
5.Training for carers
The level of services available needs to be improved and the criteria for access to the services needs to be altered so that the presence of a carer is not an inhibiting factor.
Greater links need to be made to the overall provision of institutional care so that care in the community is seen as part of an integrated programme of care. It needs to be recognised that people in community care may need to move into institutional care for relatively short periods of time with the aim of going back to community care rather than seeing such a move as a final move into an institution. Carers need to know when and in what circumstances a person needing care will be able to obtain institutional care. They also need to know when a person is likely to be discharged from institutional care and procedures need to be put in place in order to ensure that carers are consulted about such discharges. In the United Kingdom specific guidelines have been established by the Department of Health and Social Services in this regard.
Social Welfare Policy:
The policy recommended in this report is to encourage the provision of care by a wider number of persons, many of whom will be involved in the paid labour force. Social welfare policy should reflect this overall aim. The existing domiciliary care allowance is completely compatible with the objectives set out in this report. It is payable based on the needs of a child and care can be provided by the parent or parents or by another person. The level of the allowance is, however, currently very low and needs to be increased significantly. In addition, the allowance is not payable to children under 2 years of age on the basis that such children require constant care in any case. This exclusion has been criticised as being based on a failure to distinguish between the amount of care required by an average child and the amount of care required by a child with a significant disability. It would appear that there is no justifiable basis whatsoever for the exclusion of children under the age of 2 on these grounds. It is recommended that the domiciliary care allowance should be payable from the date of birth where the child satisfies the qualification conditions for the payment. In addition, it is recommended that a reduced allowance should be paid where a child is at home for a significant proportion of the year and is, for example, in residential care for another part of the year. If the allowance was increased to about £70 per week and extended to all children requiring constant care from birth to age 18, the estimated additional cost would be of the order of £25 million in a full year.2
The intention behind the carer’s allowance is to provide a personal income for some carers, to give recognition to the role which they play and to target resources at those most in need. For this reason, the payment is a strictly means tested one. The intentions behind the introduction of the payment were very worthy ones and the payment did mark an important recognition of the role of carers. However, the payment as currently structured is totally inconsistent with the approach recommended in this report. The payment requires that in order to qualify a person must be providing full-time care and must not be working outside the home. In addition, the payment only applies to carers living in the same household as the person requiring care. These restrictions have meant that relatively few carers qualify for the payment. In the longer term, the structure of the payment acts as a serious disincentive for carers to take up employment. While the restriction on working outside the home could be removed, the means tested nature of the payment would inevitably lead to employment and poverty traps for persons taking up work. It is recommended that the qualification conditions for the carer’s allowance should be progressively removed with the long-term aim of making the allowance payable in the case of all persons requiring full-time care. The payment would then be paid on the same lines as the domiciliary care allowance so that there would, effectively, be no restriction on who provided the care.3 If this approach was taken, in the longer term consideration could be given to the integration of all carer’s payments and their administration by the Department of Social Welfare.
It can be argued that this proposal will result in more payments being made to households with higher incomes which do not strictly need the allowance.4 Against this, one can argue that the payment should be seen as a transfer between households who do not have caring responsibilities towards households which do in the same way as the child benefit scheme transfers money from households without children to households with children. Secondly, the taxation of the carer’s payment could be considered although this would raise complicated issues as to who should be subject to the tax (in the same way as the similar debate about the taxation of child benefit). Finally, it is arguable that the relative contributions of households to supporting carers need to be addressed in an overall context and in a more nuanced manner than the simple means testing of the carer’s payment. For all these reasons, it is recommended that the carer’s allowance should be paid in respect of all persons requiring full-time care. The considerable cost implications of this proposal should be emphasised. It is estimated that in a full year it would cost of the order of an extra £85 million at current rates for the allowance to provide such a payment for all full-time carers of older people alone.5
Further issues arise in relation to the level of carer’s allowance and the definition of full-time care. It is unreasonable that carers should be expected to work for more than the normal working week for other workers in order to be considered to provide full-time care. This should be clarified in legislation. Despite the increases in recent years, it is noteworthy that the level of the carer’s allowance remains below the levels of the nursing home subvention (currently £70 to £120 per week). However, the cost implications of significant further increases are considerable.
The Department of Social Welfare should ensure that persons who are unable to work due to caring responsibilities receive full paid PRSI contributions with the costs of the contributions being met from the Social Insurance Fund. In France, the social insurance system provides cover for persons (whose means do not exceed a set limit) caring for a child or adult with disabilities who are not otherwise insured. This contribution is paid by the social insurance fund and gives entitlement to an old age pension (Dupeyroux and Prétot, 1989).
Tax policy and employment creation:
On the taxation side, a tax allowance of £7,500 exists where a person is employed to provide care for a person or his or her spouse requiring full-time care and attention. At present, this allowance is availed of by a very limited number of older people. A considerable number of older people do pay income tax and it is arguable that the allowance has the potential to play a considerably greater role in this area in conjunction with a range of other measures.6 In particular, the availability of equity release schemes might make additional cash available to older persons to fund such services while the introduction of private insurance schemes might fund part of the cost of community care. Consideration could also be given to extending the tax allowance to other family members contributing to the employment of a carer for an older person or person with a disability.7 In addition, there is a need for the Departments of Enterprise and Employment and Social Welfare and the Revenue Commissioners to develop simplified procedures for the employment of such carers. This is an area in which carer’s support groups might play a role in terms of facilitating the employment of persons, the completion of paperwork, etc.
It is important to note that the EU White Paper on Growth, Competitiveness, Employment, identified care for older people and people with disabilities as a potential source of new employment in the social economy (see also the Department of Enterprise and Employment Strategy Paper Growing and Sharing Our Employment (1996, p. 92) and the NESF report on the Jobs Potential of the Services Sector (1995b)). The development of employment in this area could help to meet two important social goals, i.e. the provision of support to older people and people with disabilities and the creation of employment opportunities. Such a development needs to be supported both on the demand side by improving the existing income tax allowance and the introduction of measures such as private insurance and equity release schemes and on the supply side by the provision of support to organisations creating employment in this area. Measures must also be put in place to ensure the quality of service provision in this regard.
CHAPTER V: CONCLUSIONS AND POLICY RECOMMENDATIONS
In this chapter, we summarise briefly the key findings of this study and set out a range of policy recommendations towards a long term strategy for the support of carers.
1. The Existing Position of Carers
Studies indicate that in the late 1980s there were over 66,000 people caring for older people in Ireland, about 25,000 of whom provided a lot of care. Up to 80 per cent of carers are women and many are in the older age group themselves. The majority of carers were related to the person cared for, most frequently a spouse, daughter or daughter-in-law. Only limited information is available about carers for people with disabilities.
Studies indicate that carers rarely work outside the home and that some have to give up work to provide care. Carers work long hours - over 40 hours per week in many cases. While carers generally have a positive outlook on their role, caring has costs both financial and otherwise. Many carers are in a poor financial position and many report that their caring responsibilities have affected their social lives and their personal relationships. In some cases, the stress and strain involved in caring has affected the carer’s own health.
Carers report a need for a range of policy measures to improve their position including practical help and advice in relation to available services; respite care; financial support; the provision of day centres; support groups for carers; improved home help services; improved public health nursing support; and provision for long-term residential care where the carer was no longer in a position to continue to provide care.
2. Projections for Future Demand and Supply of Carers
Projections based on population estimates and information on the current level of care need indicate that the number of people needing care will rise in the period up to 2011. This is most marked for older people with a potential increase of up to 30 per cent. However, the actual demand for care will be influenced by a range of factors including government policy as to the balance between residential and community care; household structures; housing and technology policy; medical developments; and attitudes to care. Some of these factors are likely to increase the demand for care while others may reduce it making it difficult, if not impossible, to predict accurately care needs over the period in question.
In terms of the supply of carers, population projections indicate that the potential supply of carers will actually increase up to 2011. The actual supply will however be affected by a number of broader issues such as the labour force participation rates of women, policies to reconcile work and family responsibilities and attitudes to care.
The findings highlight the importance of social policy measures in reducing the demand for care and in enabling, encouraging and supporting the provision of informal care.
3. The Existing Support Framework for Carers
At present, there are three main types of supports available to carers. These are:
i) social welfare and tax benefits;
ii) services provided directly to carers and
iii) community care services provided primarily to older people and people with disabilities but of immediate relevance to carers.
The main income support payments are the carer’s allowance and the domiciliary care allowance (for children). The carer’s allowance has been criticised because of its very restrictive qualification conditions which mean that only a small proportion of carers qualify for it, while the domiciliary care allowance is payable at a comparatively low rate.
Services directly to carers include carers support groups, training and education and a range of other services generally provided by voluntary organisations. These services have been identified as playing a key role in supporting carers. It is clear that these organisations receive low levels of public funding and that the services they provide could be expanded significantly given extra resources.
There are a wide range of community care services provided to older people and people with disabilities which are of assistance to carers. These include public health nurses, home helps, respite care, day centres and a range of other related services. Some of these services are reasonably accessible but others are subject to long waiting lists or are not available at all in some areas. In general the presence of a carer is likely to restrict or prevent access to such services. Studies indicate that the overall level of public support received by carers is very low with 80 per cent or more of carers receiving low levels of support. Thus public services continue to play a substitutional rather a complementary role and replace rather than support informal carers.
4. Key Issues in the Development of a Long-Term Strategy
1. A Policy on Caring:
1.1 Government (in particular the Departments of Health and Social Welfare) should draw up within the next two years a White Paper on Policy on Caring and Carers. This should draw on existing and forthcoming reports, including the Years Ahead and the Health Strategy and on the Carer’s Charter. The White Paper should contain a commitment to the provision, to the maximum extent possible, of care in the community and by the community. Community care services should aim to compliment rather than substitute for informal care. The White Paper needs to address four key issues:
(1)How can care be funded and resourced?
(2)How can care needs be reduced?
(3)How can the supply of informal carers be increased? and
(4)How can appropriate supports be provided to carers in the community?
1.2 Policy should set clear goals in relation to caring and carers, including the support to be provided to carers. The extent to which these goals are being met should be monitored on an ongoing basis and policy should be reviewed on a five yearly basis to take account of changes in the overall situation.
2. Funding and Resourcing Community Care:
2.1 Resourcing and funding for community care can come from:
(1)The voluntary contributions of the services of carers and carer’s support groups;
(2)Financial contributions from the persons requiring care and their families; and
2.2 The White Paper should set out a clear policy as to the desired balance between these different sources of funding and resources. In relation to community care services, national guidelines should be introduced by the Department of Health in relation to eligibility and charges as set out in the Health Strategy.
2.3 In relation to the provision of care on a voluntary basis, studies indicate that one member of the family (generally a wife, daughter or daughter-in-law) is largely responsible for the provision of care with relatively little support from other persons. This is an inequitable distribution of responsibilities and government policy should focus on ways of broadening out care and responsibilities amongst other members of the family and the community.
2.4 In relation to the provision of funding by the person requiring care and his or her family, alternative methods of facilitating such funding should be examined by the Departments of Health and Finance. These should include measures to facilitate private health insurance towards the cost of long-term care and equity release schemes whereby persons can realise the value of their home in order to generate a cash income.
2.5 In relation to public funding of community care services, the objective of broadening out responsibility for the provision of care in the community will involve a greater allocation of public resources to the funding of community care services.
3. Reducing the Need for Care:
3.1 Policy should aim to reduce the need for care through the role of health policy in the development of preventative health care and health promotion programmes; through the provision of accessible housing; the provision of assistive technology; and by ensuring an adequate income for older people and people with disabilities. All these measures can help to reduce the demand for informal care.
4. Increasing the Provision of Care:
4.1 A key issue in ensuring a supply of carers in the coming fifteen years will be measures to reconcile work and family responsibility. Recent reports from the National Economic and Social Forum and the Employment Equality Agency have recommended the introduction of more flexible forms of work including part-time employment, job redistribution measures, flextime, working from home and job sharing. These general measures would help people to reconcile work and caring responsibilities. The Social Partners should examine how these measures could be put in place in the context of the NESF report. In the context of the introduction of the EU Directive on Parental Leave, the Social Partners should also negotiate measures in relation to caring leave and support measures for carers.
4.2 A report from the European Foundation for the Improvement of Living and Working Conditions has highlighted a range of workplace initiatives which have been taken by employers in other European countries in response to the growing care needs of their staff. There are many economic reasons which justify employers in adopting this approach including the ability to recruit and retain quality staff, having more motivated and productive staff, reducing levels of employee’s stress, sick leave or absenteeism and improving the reputation and image of the business. Drawing on these experiences, employer’s organisations and trade unions should include the provision of such benefits in overall negotiations, including any negotiations for a further national agreement.
4.3 The Department of Enterprise and Employment and FÁS should ensure that persons who have been out of the work force due to caring responsibilities are entitled to obtain access to all employment and training schemes so as to facilitate a return to work.
5. Supporting Carers:
5.1 A range of measures need to be taken to support carers. In particular, additional funding should be provided by the Department of Health and the Health Boards to voluntary organisations providing direct services to carers. It is clear from the studies which have been carried out that investment in this area would be a highly cost effective way of providing additional support to carers. The existing respite fund for carers should be expanded to cover other caring services and the Department of Health should review the operation of the fund to ensure that it is administered in an efficient, equitable and transparent manner.
Development Officer for Carers
5.2 A development officer for carers should be employed with the designated role of supporting carers and helping to develop and coordinate services. This would draw on the experience of the Carer’s Charter in Action Project in Co. Clare. Funding should be provided by the Department of Health. One development officer should be employed in each Health Board area on a pilot basis within the next two years with a view to extending this service to all community care areas.
Involvement in Planning and Delivery of Services
5.3 Carers should be involved in the planning and delivery of services through membership of planning and advisory groups.
Improvement in Community Care Services
5.4 Community care services provided by or under the auspices of the Health Boards also need to be reformed. In particular, improvements need to be put in place in relation to the provision of respite care, the provision of day centres, the provision of public transport services, the improvement in and expansion of the home help service, and in the provision of training for carers, so as to allow greater access to these services. Criteria for access to the services needs to be altered by the Health Boards so that the presence of a carer is not an inhibiting factor.
5.5 In relation to the home help service, national minimum standards in relation to entitlement to services and charges should be established; people should not be disqualified for entitlement to home help service because of the presence of a carer; and the rates of pay of home helps should be standardised and raised to an equitable level.
Domiciliary Care Allowance
5.6 The domiciliary care allowance should be extended by the Department of Health to all children who require constant care from birth or diagnosis of the disability. A pro-rata allowance should be payable to children in residential schools or institutions in respect of their periods at home. The level of the allowance should be increased significantly. This should be done on a phased basis over the next 5 years.
5.7 The qualification conditions for the carer’s allowance should be progressively removed by the Department of Social Welfare with the long-term aim of making the allowance payable in the case of all persons requiring full-time care. This would involve the removal of the means test and other qualification conditions concerning the residence and employment status of the carer. The term “full-time care” should be defined as the normal working week. These changes should be made on a phased basis over the next 5 years.
Social Insurance Cover
5.8 Persons who are unable to work due to caring responsibilities should receive full paid PRSI contributions with the cost of the contributions being met from the Social Insurance Fund.
Employment of Carers
5.9 The tax allowance of up to £7,500 for the employment of a carer has the potential to play a considerably greater role in relation to the provision of care and support. Consideration could be given to extending this allowance to a broader range of family members contributing to the employment of a carer for an older person or a person with disability. The Department of Enterprise and Employment, the Department of Social Welfare and the Revenue Commissioners should develop simplified procedures for the employment of such carers and should publicise the scheme. Carer’s support groups might play a role in terms of facilitating the employment of persons, the completion of paperwork, etc. The development of employment in this area could help to meet two important social goals, i.e. the provision of support to older people and people with disabilities and the creation of employment opportunities.
This study has indicated that the problems arising in relation to the provision of a long-term framework for the support of female carers of older people and people with disabilities over the next fifteen years are not insurmountable. There is a large reservoir of support and goodwill for the idea of caring in and by the community. There are a very large number of people who are willing to give of their time to provide informal care. To date, there has been a failure to develop adequate policies to properly support that voluntary effort. It is essential that such policies should be developed in the short term if the informal provision of care by family members and members of the community is not to be undermined leading to much greater long-term costs for the State. The key issue in this area is the development of a political will to develop a coherent policy and to allocate resources so as to put in place a long-term support framework for carers which will put services on a sound basis for the twenty-first century.
J. Blackwell (1995) Reason and Reform: Studies in Social Policy, Dublin: IPA.
J. Blackwell, E. O’Shea, G. Moane and P. Murray (1992) Care Provision and Cost Measurement: Dependent Elderly People at Home and in Geriatric Hospitals, Dublin: ESRI.
S. Cantillon, J. Curtis and J. Fitz Gerald (1994) The Medium-Term Review: 1994-2000, Dublin: ESRI.
Carers Association (1995) Pre-Budget Submission, Dublin: CA.
Central Statistics Office (1995) Population and Labour Force Projections, Dublin: Stationary Office.
Commission on Health Funding (1989) Report, Dublin: Stationary Office.
M. Cousins (1995) The Irish Social Welfare System: Law and Social Policy, Dublin : Round Hall.
Department of Enterprise and Employment (1996) Growing and sharing our employment, Dublin: Stationary Office.
Department of Health (1994) Shaping a healthier future, Dublin: Stationary Office.
Department of Social Welfare (1995) Statistical Information on Social Welfare Services 1994, Dublin: Stationary Office.
J.J. Dupeyroux and X. Prétot (1989) Sécurité sociale, Paris: Sirey.
J. Eleri Phillips (1996) Working and Caring: Developments at the Workplace for Family Carers of Disabled and Older People, Luxembourg: Office for the Official Publications of the EC.
T. Fahey (1995) Health and Social Care Implications of Population Aging in Ireland 1991-2011, Dublin: National Council for the Elderly.
T. Fahey and P. Murray (1994) Health and Autonomy Among the Over-65s in Ireland, Dublin: National Council for the Elderly.
P. Finucane, J. Tiernan and G. Moane (1994) Support Services for Carers of Elderly People Living at Home, Dublin: National Council for the Elderly.
H. Fisher (1996) Introducing Family Friendly Initiatives in the Workplace, Dublin: Employment Equality Agency.
I. Hoskins (1993) ‘Combining work and care for the elderly: an overview of the issues’ International Labour Review, 132/3, p. 347.
Inter-Departmental Committee (1968) The Care of the Aged, Dublin: Stationary Office.
F. Lundström and K. McKeown (1994) Home Help Services for Elderly People in Ireland, Dublin: National Council for the Elderly.
K. Lynch and E. McLaughlin “Caring Labour and Love Labour’ in P. Clancy, S. Drudy, K. Lynch and L. O’Dowd eds. Irish Society: Sociological Perspectives, Dublin: IPA.
National Economic and Social Forum (1995a) Quality Delivery of Social Services, Dublin: NESF.
National Economic and Social Forum (1995b) Jobs Potential of the Services Sector, Dublin: NESF.
National Economic and Social Forum (1996) Jobs Potential of Work Sharing, Dublin: NESF.
J. O’Connor and H. Ruddle (1988) Caring for the Elderly Part II: The caring Process : A Study of Carers in the Home, Dublin: National Council for the Elderly.
J. O’Connor, E. Smyth and B. Whelan (1988) Caring for the Elderly Part I: A Study of Carers at Home and in the Community, Dublin: National Council for the Elderly.
S. O’Connor (1987) Community Care Services: An Overview, Dublin: National Economic and Social Council.
E. O’Shea (1993) The Impact of Social and Economic Policies on Older People in Ireland, Dublin: National Council for the Elderly.
E. O’Shea and J. Hughes (1994) The Economics and Financing of Long-Term Care of the Elderly in Ireland, Dublin: National Council for the Elderly.
Review Group on Mental Handicap Services (1991) Needs and Abilities: A Policy for the Intellectually Disabled, Dublin: Stationary Office.
H. Ruddle (1994) Carers Charter in Action - Pilot Project: An Evaluation Study, Dublin: Policy Research Centre.
H. Ruddle and J. O’Connor (1993) Caring Without Limits? Dublin: Alzheimer Society of Ireland.
A. Salvage (1995) Who will care? Future prospects for family care of older people in the European Union, Luxembourg: Office for the Official Publications of the EC.
Soroptimist International (1995) The Balance of Care: Study of Carers Needs in Co. Clare, Ennis: SI.
J. Tubridy (1995) Views from the Inside : A Qualitative Analysis of Submission to the Commission on the Status of People with Disabilities, Dublin: CSPD.
D. Watson (1996) An Analysis and Evaluation of Statistical Information on People with Disabilities in Ireland, Dublin : ESRI.
A. Winslow (1993) ‘The Implications of Caregiving for carers of People with Physical Disabilities’ M. Soc. Sc. thesis, UCD.
Working Party on Services for the Elderly (1988) The Years Ahead… A Policy for the Elderly, Dublin : Stationary Office.
Appendix I : Detailed Projections on Demand for Care
1. Older People
Table 1 : Male Population over 65 - 1996-2011 (‘000)
Source : Projections prepared for National Council for the Elderly by Peter Connell published in Fahey (1995).
Table 2 : Female Population over 65 - 1996-2011 (‘000)
Source : As table 1.
Table 3 : Incidence Rates of Care Need I (% requiring care)
Source : Fahey And Murray (1994, p. 126).
Table 4: Incidence Rates of Care Need II (% requiring care)
Source : Calculated from O’Connor and Ruddle (1988).
Table 5: Projections of care need for persons over 65 - 1996-2011 (‘000)
The projections in table 5 are calculated by applying the incidence rates set out in tables 3 and 4 to the population projection set out in tables 1 and 2. The following assumptions are used.
1. Assumptions in relation to mortality, migration etc. for the population projections are set out in Fahey (1995).
2. It is assumed that 95% of the population over 65 will reside in the community.
2. Adults with Disabilities 18-64
Table 6 : Projections of care need for persons 18-64 - 1996-2011 (‘000)
Source : Population projections from CSO (1995); incidence rates from Watson (1996).
The estimates set out in table 6 are obtained by applying the incidence rates of severe restriction on daily activities set out in Watson (1996) (1.3% of persons aged 18-34 and 4% of those in the 35-64 age group) to the population projections prepared by the Central Statistics Office. The following assumptions apply.
1. The detailed assumptions in relation to mortality, migration, etc. are set out in the CSO projections (1995, the low migration (M1) option was used in table 6).
2. It is assumed that 97% of persons between the age of 18-64 live in the community.
2. Children with Disabilities 0-17
Table 7 : Projections of care need for children 0-17 - 1996-2011 (‘000)
Source : Population projections from CSO (1995). Numbers in receipt of domiciliary care allowance from Department of Health.
The incidence of care need is projected by applying the existing proportion of children in receipt of domiciliary care allowance (adjusted to allow for the fact that this payment is payable only in the age group 2-16) to the population projections prepared by the CSO. Full details in relation to population assumptions are set out in the CSO report. The low migration (M1) and low decline in fertility (F1) options are used in table 7.
1 “Are you hampered in your daily activities by any chronic physical or mental health problem, illness or disability?”
2 About 10 per cent of persons aged 65 and over said that they had experienced a severe restriction in their daily activity. This compares to about 20 per cent of people in this age group who require some level of care as estimated from the National Council for the Elderly studies. While it would be unwise to put too much weight on comparisons between studies carried out in different ways and for different purposes, these figures do suggest that using the number experiencing a severe restriction as a proxy for the need for care will not over estimate care requirements.
3 The World Health Organisation defines the term “impairment” as “any loss or abnormality of psychological, physiological or anatomic structure or function”.
4 See, for example, the development of the concept of independent living for people with disabilities and the pilot measures for the employment of personal assistants by people with disabilities.
1 In a limited number of cases (336 in 1994) the prescribed relative’s allowance is still payable to persons who had claimed the payment prior to 1990 and who would not otherwise qualify for the carer’s allowance.
2 In 1995 this was extended to include pensioners in receipt of non social welfare pensions such as occupational pensions.
1 In many cases, persons also retain ownership of the home under these schemes.
2 The costs could be reduced somewhat where persons in the 16-17 age group are in receipt of disabled persons maintenance allowance.
3 Unlike domiciliary care allowance, however, the payment would be made to the carer and not to the person cared for.
4 In the absence of detailed data on the income of caring households we do not know to what extent this may occur in practice.
5 Assuming about 31,000 full time carers of older people. The available information on the care needs of people between 18 and 65 is too imprecise to make any reliable estimate of the costs involved.
6 Statistics provided by the Revenue Commissioners indicate that 61,500 people over 65 pay tax at the standard or higher rate with a further 31,500 paying marginal tax.
7 In line with recent policy, the allowance should be limited to the standard rate of tax.
1 The numbers in this age group are estimated as the population projections published by the CSO span the particular age group involved.
2 The numbers in this age group are estimated as the population projections published by the CSO span the particular age group involved.