Committee Reports > List of Committees > Joint > 2001 > Committee on Family, Community and Social Affairs > Final Report on Comhairle Bill 1999

JOINT COMMITTEE ON FAMILY, COMMUNITY AND SOCIAL AFFAIRS.

COMHAIRLE BILL, 1999

AN BILLE UM CHOMHAIRLE, 1999

23^rd November 1999

The Challenges of Ageing, Care-giving And Political Choice

July, 2001

JOINT COMMITTEE ON FAMILY, COMMUNITY AND SOCIAL AFFAIRS

ORDERS OF REFERENCE

Dáil Éireann

Order of 20 November 1997:

(1) (a)That a Select Committee, which shall be called the Select Committee on Family, Community and Social Affairs, consisting of 14 members of Dáil Éireann (of whom 4 shall constitute a quorum), be appointed to consider such-

(i)Bills the statute law in respect of which is dealt with by the Department of Social, Community and Family Affairs, and

(ii)Estimates for Public Services within the aegis of that Department, as shall be referred to it by Dáil Éireann from time to time.

(b)For the purpose of its consideration of Bills under paragraph (1)(a)(i), the Select Committee shall have the powers defined in Standing Order 78A(1), (2) and (3).

(c)For the avoidance of doubt, by virtue of his or her ex officio membership of the Select Committee in accordance with Standing Order 84(1), the Minister for Social, Community and Family Affairs (or a Minister or Minister of State nominated in his or her stead) shall be entitled to vote.

(2) (a)The Select Committee shall be joined with a Select Committee to be appointed by Seanad Éireann to form the Joint Committee on Family, Community and Social Affairs to consider-

(i)such public affairs administered by the Department of Social, Community and Family Affairs as it may select, including bodies under the aegis of that Department in respect of Government policy,

(ii)such matters of policy for which the Minister in charge of that Department is officially responsible as it may select,

(iii)the strategy statement laid before each House of the Oireachtas by the Minister in charge of that Department pursuant to section 5(2) of the Public Service Management Act, 1997, and shall be authorised for the purposes of section 10 of that Act, and

(iv)such other matters as may be jointly referred to it from time to time by both Houses of the Oireachtas, and shall report thereon to both Houses of the Oireachtas.

(b)The quorum of the Joint Committee shall be 5, of whom at least 1 shall be a member of Dáil Éireann and 1 a member of Seanad Éireann.

(c)The Joint Committee shall have the powers defined in Standing Order 78A(1) to (9) inclusive.

(3)The Chairman of the Joint Committee, who shall be a member of Dáil Éireann, shall also be Chairman of the Select Committee.

Seanad Éireann

Order of 19 November, 1997:

(1) (a)That a Select Committee consisting of 5 members of Seanad Éireann shall be appointed to be joined with a Select Committee of Dáil Éireann to form the Joint Committee on Family, Community and Social Affairs to consider-

(i)such public affairs administered by the Department of Social, Community and Family Affairs as it may select, including bodies under the aegis of that Department in respect of Government policy,

(ii)such matters of policy for which the Minister in charge of that Department is officially responsible as it may select,

(iii)the strategy statement laid before each House of the Oireachtas by the Minister in charge of that Department pursuant to section 5(2) of the Public Service Management Act, 1997, and shall be authorised for the purposes of section 10 of that Act,

(iv)such other matters as may be jointly referred to it from time to time by both Houses of the Oireachtas, and shall report thereon to both Houses of the Oireachtas.

(b)The quorum of the Joint Committee shall be 5, of whom at least 1 shall be a member of Dáil Éireann and 1 a member of Seanad Éireann.

(c)The Joint Committee shall have the powers defined in Standing Order 62(A) (1) to (9) inclusive.

(2)The Chairman of the Joint Committee shall be a member of Dáil Éireann.

On 13 March 2001 the Committee agreed the following project description ‘“Review of current mechanisms for the support of carers and proposals for future initiatives in this area.’.

—Séamus Ó Braonáin, Aire Stáit ag Roinn an Taoisigh.

Acknowledgements

The Joint Committee would like to express its deep gratitude to Aisling Byrne, Researcher, for her unfailing efforts in the course of the preparation of this Report.

We would like to thank Dr. Pauline Conroy of Ralaheen Research & Design Ltd., for her comments on an earlier draft of this paper.

A number of issues arose from discussions with the Carer’s Association, the Department of Health and Children, and Carers themselves which were useful in shaping the final version. We are grateful for their contribution.

Table of Contents

Introduction

This paper presents a review of carers in Ireland. It examines existing supports and policy interventions, and evaluates the research in this area to date. The paper considers some of the wider, non-monetary, issues affecting Carers – it is divided into six sections: Population Growth and Projections; Work-Life Balance – The Way Forward; Carer’s Needs; Government Policy on Caring: Policy versus Practice; Long-Term Care Needs – No Clear Policy Location; and From Payment to Recognition. For the purpose of this report a carer is defined as someone who provides full-time care and attention to an older person or a person with a disability, on an unpaid basis. There is limited research available on the care needs of younger people with a disability¹ - for this reason the majority of studies and research carried out to date on the needs of carers and the demands for long-term care have focused solely on older people.

Various studies have indicated that families play a crucial role in the care of older dependent people, and disabled children, often at a great personal loss in terms of opportunity costs foregone (Blackwell et al, 1992; Durkan, 1999; Watson, 1999; OECD, 1988; OECD, 2000). The Western Health Board Study on informal care found that carers experienced a range of negative financial, physical, psychological and social effects and received little practical and emotional support (O’Neill and Evans, 1999). Despite this, informal care in the community is widely believed to be the best option for people who cannot manage on their own. The Health Strategy document states that one of the objectives of health and social services for older people is:

“… to encourage and support the care of older people in their own community by family, neighbours, and voluntary bodies” (Department of Health, 1994: 67).

Concerns about the level of support for carers and carers needs have consistently been ignored. The nature of the caring role and the effects of providing care in the community now need to be addressed as support for community care initiatives is likely to be more important in the future due to both the change in future demographic trends and the already spiralling costs of institutional care.

Institutional and long-term care has always been a need traditionally met by the government, therefore, while there has been a move towards community support for care of the elderly public finances continue to bear only a fraction of the cost². The policy challenge in meeting the needs of carers is a value-based decision concerning the allocation of resources. Many carers feel that the health service is renouncing its responsibility for care and making people rely on their own resources. Delivery of services at the sharp end is by local government which produces variations in policy implementation, the feeling is that a contract with the people has been broken. The reality is that there never really was one. The result is a sense of betrayal, a lack of trust and a genuine sense of helplessness.

Population Growth and Projections

There are clear demographic trends which have serious future cost implications for our elderly population. Within the OECD it is predicted that between 1950 and 2050 the proportion of the population aged 65 or over will have more than doubled from an average of less than 10 per cent to an average of more that 20 per cent (OECD, 1988). EU figures also indicate that the proportion of people aged 65 or over will increase from 15 per cent of the population to 20 per cent between 1995 and 2020 (Pacolet et al, 1998).

From 1961 to 1986, the Irish population grew by 25 per cent, a substantial rate of growth. From 1986 to 2011, according to CSO assumptions, the Irish population will grow by 4.5 per cent approximately – less than one quarter of this pace (Table 1.1). While absolute growth of population is no longer the driving force it has been, the phenomenon of population ageing has become increasingly central to discussions on health and social services.

The elderly population, which grew at roughly the same rate as the total population between 1961 and 1986, is set to increase. Up to about 2006 the increase will be fairly small but will begin to pick up thereafter and from 2011 the increase will be substantial (National Council for the Elderly, 1995). For instance, the number aged 65 or over will increase from under 385,000 in 1986 to 486,000 in 2011, a rise of 26 per cent, and to 690,000 by 2026, a further rise of 42 per cent after 2011. In proportional terms, the elderly will comprise almost 18 per cent of the population in 2026 as against 11 per cent in 1986 (Table 1.1).

Table 1.1: Population by Age, 1961-2026 (in Thousands)

Source: Central Statistics Office, various publications.

Ageing of the Aged – The Implications

Within the overall shift in the age proportions, there is a second change which is taking place which is termed the ageing of the aged. This refers to the increasing numbers of people aged 80 or over – a group which has considerable impact on services for older people. Although the proportion of those aged over 80 remains small in relative terms, it is growing at a considerably faster rate than the population as a whole and faster than the over-65 population as a whole (Pacelot et al, 1998). While increased life expectancy³ is a successful outcome of economic growth and of policies to improve health and social welfare, it will provoke a series of complex challenges to past practices and demand innovative solutions from social and long-term care systems. In particular, the challenge of achieving gender equity and equal opportunities, arising from the traditional distribution of responsibility for caring for frail elderly family members, can be as large – and as complicated – as are the gender issues surrounding childcare. Despite the fact that care for the frail elderly depends upon longstanding practices in the gender division of labour and that the design of care benefits and allowances can potentially have major consequences for women’s chances of achieving equality, the challenge of an ageing society is rarely analysed in these terms⁴. Decisions in resource allocation, both between generations and in the balance between public and private expenditure will be important factors of informal care in the future.

Work-Life Balance – The Way Forward

In addition to their increasing commitment to the paid labour market⁵, women are still over-represented in most care-giving activities. One of the legacies of post 1945 social policies is the existence of an “invisible welfare state” of informal care provided by women to children or the frail elderly (Waerness and Ringen, 1987). The rapidly rising rates of female labour force participation have not by any means eliminated this invisible welfare state. Another important aspect is the fact that the majority of older people receiving care are women, and they often prefer to receive care from another woman. The result of such gender patterns is that many care providers are sandwiched between paid work and care work, between caring for children and caring for their frail elderly relatives.

Given this intergenerational pattern, women in particular are confronted with a situation in which caring responsibilities compete with their own employment and the related accumulation of social rights, such as pension rights and sometimes job-related basic or supplemental health insurance or disability insurance. It has become apparent that care in the community has become care by the community – that is care provided mainly by women. This conflict will have consequences for participation in the labour force, either in terms of withdrawal/participation, reduced hours and also reduced wages.

Statistics for any type of ‘caring’ reveal that women do more caring work, but that men also take on such responsibilities (OECD, 2000). In Ireland little is known about men’s care-giving activities. Statistics simply reporting the gender of care-givers however can disguise the distributional difference in workload. Further research in the area of men as carers is needed before a discussion on the gender distribution of responsibilities in care-giving in Ireland can take place.

Carer’s Needs

On the basis of current good economic performance⁶, our national policies in respect of equality and our intentions such as those outlined in the Programme for Prosperity and Fairness, the needs of carers can no longer be ignored and should now be a priority. A number of studies have identified the needs of carers which are summarised by the Fourth Joint Committee on Women’s Rights (1996):

Financial Support

There are three main payments in respect of caring: the means-tested carers’ allowance (CA) and the more recently introduced Carer’s Benefit scheme administered by the Department of Social Community and Family Affairs, and the domiciliary care allowance (DCA), a payment in respect of children with disabilities who require constant care, administered by the Department of Health and Children.

The CA was introduced in November 1990 to replace the Prescribed Relatives Allowance (PRA), introduced in 1968. There are currently 14,525 carers receiving the maximum rate of CA, this represents 85 per cent of all carers receiving the allowance. Of these carers there are 2,378 awarded CA for children who are in receipt of DCA (PQ:Frances Fitzgerald 158 ref.no.12514/01). The remaining 15 per cent of people in receipt of Carer’s Allowance receiving different rates of payment is shown in Table 2.1.

Table 2.1: Recipients of Carer’s Allowance receiving different rates of payment

Source: PQ:Frances Fitzgerald ref.no.12530/01

It was not until 1986 that the Commission on Social Welfare noted that a carer/prescribed relative might have no personal income and recommended that people caring full-time for older relatives should be entitled to claim social assistance in their own right (Department of Social Community and Family Affairs, 1998a)⁷. This is a fundamental issue – the giving of Carers Allowance as an income support measure rather than a ‘payment for caring’, an acknowledgement of the service carers themselves provide. The effect of a ‘payment for caring’ would mean the abolition of the means-test and the payment of an allowance to all carers, regardless of their income.

The Carer’s Benefit scheme introduced in October 2000 allows carers to take job-protected leave of absence. Since its introduction 420 carers are availing of this benefit at a cost of £293,000 (PQ:Frances Fitzgerald 182 ref.no.12517/01). Continuos monitoring of this scheme is important for future evaluation.

Several studies have recognised the stress involved in the burden of caring (Blackwell et al, 1992; Fifth Report of the 4^th Joint Committee on Women’s Rights, 1996; Durkan, J. 1999; Watson, 1999; OECD, 2000;). There is no financial support however for carers who are outside the low-income group or for carers who are in receipt of another social welfare payment, carers have to forego this to receive the Carer’s Allowance (CA), if they choose not to they will not be entitled to the respite care grant. The CA payment differential of £3 per week over other welfare payments is negligible compensation or recognition for a carer’s contribution to community care objectives.

A fundamental factor in welfare economics is that ‘inefficient’ outcomes are sometimes socially preferable. It can be seen that policies which improve efficiency may have socially detrimental effects. For this reason the dominant view in Ireland, and across the EU and other OECD countries, is that there should be a balance between institutional and community care, with people encouraged to remain in their own homes for as long as possible (OECD, 1996b). Therefore the payment of CA – inadequate as it is – in support of these social policies, although inefficient in the narrow economic sense, means that there are important social and equity objectives that reflect the social services and the needs of care recipients in particular. However, these social objectives need to be made explicit with suitable measures which allow for policy evaluation, and political choice.

One major problem in evaluating policy is the lack of reliable data, there is no data available on the situation which existed before the CA was introduced which means there is no basis for comparison. In the same way, there is no reliable data since the introduction of CA (Department of Social, Community and Family Affairs, 1998). While it is clear that the objectives of the scheme have evolved over time, it is equally clear that these objectives do not meet with the approval of carers – there is no coherent policy of income support for carers, there is no unified system – income support is fragmented and lacking in co-ordination. The future development of the Carer’s Allowance will also have to take account of the views of the Department of Health and Children on the role of the Allowance in the wider context of health care provision in the home generally and life-style issues such as respite care, personal assistance services and home helps.

Respite Care

The Review Group on Health and Personal Social Services for People with Physical and Sensory Disabilities defines respite care as:

“…temporary care, either community or centre based, which provides relief and personal development opportunities for the carer and the person requiring care within a variety of facilities. The need for care ranges from crisis intervention to planned regular breaks” (1996:77).

Respite care is one of the most important services required by carers. Regular planned breaks and emergency cover can assist a carer to care for longer periods, reducing the number of people seeking long term residential care and thereby reducing the cost to the state. Notwithstanding this, less than 16,000 respite care grants (£300) were paid by the Department of Health & Children in 2000, in proportional terms this means less than one-third of all carers received the grant (PQ: Frances Fitzgerald 168 ref.no.12541/01; PQ:Frances Fitzgerald 185 ref.no. 12518/01). This non-recognition of carers in Ireland has resulted in a respite care system that is inadequately funded, has very little resources, and has developed in an ad hoc and sporadic fashion throughout the country.

A key constraint in the area of developing respite care relates to the availability and use of resources by the Department of Health and Children. The extension of the respite care grant in 1999, to those in receipt of Domiciliary Care Allowance is of little use in an already creaking respite care system. Policy effectiveness is heavily dependent on successful linkages and new initiatives in the area of respite between the Department of Health and Children, other Government Departments and agencies. For example care recipients often prefer ‘home-based’ respite services.

Personal Assistance Services

Personal Assistance Services (PAS) are provided to people with physical disabilities to enable them to live as independent a life as possible. Personal Assistance Services in Ireland are heavily dependent on the Community Employment (CE) Programme which is grant-aided by FÁS. The primary objective of this scheme is to help long-term unemployed people re-enter the workforce. The CE Programme is being terminated by FÁS at the end of this year and notwithstanding the objective of CE, many participants on this scheme are a valuable resource to voluntary organisations in the caring area.

Centres for Independent Living (CILs) receive 88 per cent of their funding for Personal Assistance Services through FÁS CE programmes – the estimated total cost of the service is in the region of £10 million (CIL, 2000:2). The Review Group on Health and Personal Social Services (1996) took the view that a personal assistance allowance should be paid by the Department of Social Community and Family Affairs to people with severe physical disabilities. They recommended that overall funding of this service should be considered in the context of the development of support services generally for people with disabilities, this has not been accepted or implemented.

Support for Carers

The policy orientation towards community care in Ireland combined with inadequate funding provision places huge additional burdens on carers. The Plan for Women’s Health recognises the need for support for carers:

“… there has been increasing recognition in recent years of the contribution of informal carers and of the need for health services to provide greater support for carers as well as to the recipient of care” (Department of Health, 1997: 62).

Despite this recognition in 1997 no additional support for carers has been given. In fact state intervention is more often used to substitute for the carer, or used when care supports break down, than to offer practical support to ensure continuation of care in a complementary sense. Carers often assume greater responsibility for the delivery of many everyday functions, which can fundamentally alter family relationships in ways that are neither easy nor straightforward. Parents and their adult children reverse their traditional roles which can be painful and difficult for both.

Improved home help services

The continuous lack of investment in community care services coupled with the availability of grants for institutional care has made institutional care a more favourable option for some. For example there is no legal obligation on the health boards to provide home helps therefore entitlement is discretionary⁸. There are also large variations within and between health boards on the availability of the service as well as a lack of consensus with regard to the scope of the service and the level of training necessary (Swanwick and Lawlor, 1998). Against this uncertain background the National Council on Ageing and Older People (1995) emphasise the importance of ensuring that the future of the home help service is safeguarded.

Table 3.1: No. of Recipients, over 65, of Home Help Services by Health Board, 1996-2000.

Source: PQ:Frances Fitzgerald 174 ref.no.12547/01

___ awaiting data

This situation contrasts with the statutory obligation of Health Boards to provide nursing home subventions. This lack of investment in care in the community has been recognised by the Department of Health & Children:

“…community-based services are not as yet developed to the extent they can appropriately complement and substitute for institutional care or provide adequately for those in the community who are dependent on support” (1994:10).

Consistent failure by the health boards to invest adequately in home helps has resulted in demand being channelled into particular services simply because they’re available. This has presented a situation today where public expenditure is skewed in favour of nursing homes rather than home care. For instance, the Department of Health & Children provided nearly £28m in 1997 to meet the costs of the Nursing Home Subvention Scheme; this increased by nearly 40 per cent to £38m in 2000. A further increase of 19 per cent is being provided in funding this year – total expenditure will be in the region of £45 million.

Table 4.1: No. of Registered⁹ Nursing Homes by Health Board Area, 2001.

Source: PQ:Frances Fitzgerald 173 ref.no.12546/01. ___ awaiting data

By contrast a minimum of £4m additional funding was provided to the Health Boards over the last three years in respect of specific assistance to Carers. Over the same period community-based services received £11m in additional funding (PQ:Frances Fitzgerald 166 ref.no.12539/01; PQ:Frances Fitzgerald ref.no.12513/01). Despite this scenario the Blackwell et al study (1992) indicated that less than 25 per cent of carers expressed a preference for the option of having the informal care they provide supplied formally by the state.

Government Policy on Caring: Policy versus Practice

Government policy places an increasing emphasis on maintaining people in the community and the valuable role of the carer in the community. Despite this there has been little effort to shift the focus of policy to support this or to create targets that narrow inequality beyond more general rhetoric about issues of equity and access. Some of the key priorities in its Action Programme for the Millennium include:

•“to ensure that the health and social services are responsive to their needs;

•to promote policies to assist the concept of independent living;

•to increase the value of Carer’s Allowance in real terms;

•to provide adequate resources for national respite care” (1997:7,18).

One would be forgiven for asking if these objectives are somewhat divorced from reality as the statutory obligation to provide nursing home subventions, in contrast with the discretionary nature of community care, has resulted in an imbalance of public expenditure in favour of institutional care. The Nursing Home Subvention Scheme could be used in a much more creative way to supplement care at home. If an elderly person qualifies for a subvention, that money could be paid to the family and with sufficient support the person may be able to stay at home. The Commission on the Family (1998) also argue that a strong shift in policy is required if the priority of maintaining older people in dignity and independence at home is to be achieved (1998: 302-304).

Examples of the ‘give it with one hand and take it back with the other’ approach of the Government include the insistence by the Department of Social Community and Family Affairs (1998) that the Carer’s Allowance is not income for work done at home as a carer, while at the same time the Revenue tax the allowance as income. Other examples include the loss of existing social welfare payments, rent allowances, the differential rent scheme and back to school allowances for families already in desperate financial circumstances when they now qualify for the allowance. The Irish Government has even gone to the trouble of ensuring that family carers are excluded from EU employment-protection directives as they apply in Ireland (Yeandle et al, 1999)¹⁰.

A total of £2 billion has been made available for investment in the health services under the National Development Plan 2000-2006. Of this £200m has been ear-marked for the development of a range of services for older people including assessment and rehabilitation facilities, community nursing units, convalescent and respite beds and day-care centres (PQ:Frances Fitzgerald 166 ref.no.12539/01). These facilities will be provided, replaced or up-graded – a clear indication of acceptance of the need for improved community-based services and support for carers. Past failure in this area has been attributable not so much to policy as to implementation.

Long Term Care Needs – No Clear Policy Location

Two basic concerns with regard to long-term care include:

•the need to ensure that people who need this type of care receive it,

•the need to ensure that arrangements for long-term care are sufficient to guarantee that patients with these needs do not block acute inpatient facilities or put excessive burdens on community-based services.

This ‘poisoned chalice’ has been the cause of debate and splits within and between organisations and institutions involved (Swanwick and Lawlor, 1998).

The nature of long-term care needs creates a real policy challenge, as policies are often fragmented around a set of distinctive goals, and with different institutions, and different levels of government, with responsibility for various aspects of care. This basket of needs for long-term care means that there is no clear policy location for the problem. Not only does it cross policy domains, but also responsibility for service delivery is shared by a variety of agencies, both public and private – Colgan has described the situation as “a battleground between service providers and administrators” (1998:115).

Despite the escalating cost of care, with a single room in a nursing home in Dublin now costing up to £650 a week, there are no long-term care insurance policies on the market. The recent amendment to the Finance Bill providing tax relief at the standard rate, for insurance for long-term care, is the first step to encourage the development of such a market – but such niche insurance is likely to be expensive (O’sullivan, 2001). While the Government has been busy defusing the pensions time bomb encouraging people to take out private pensions, it is only recently that it has turned its attention to the care issue. Over £5 billion has already been allocated to the National Pensions Reserve Fund with further annual statutory contributions of 1 per cent of GNP going towards the fund (PQ:Frances Fitzgerald 183 ref.no.12511/01).

The provision of long-term care will require a review of all long-stay facilities, ensuring equality of access, and using private beds funded by nursing home grants where appropriate.

‘The Years Ahead’

The recommendations in the report ‘The Years Ahead’ published in 1988 by a Working Party on Services for the Elderly constituted official policy on health and social services for the elderly in Ireland. In view of this it is noteworthy that most of the recommendations in ‘The Years Ahead’ have not been implemented in any widespread manner throughout the health boards. Health boards have developed and adapted their own models rather than adhering to the model outlined in this report. The Years Ahead review (1997) states that while improvements in services have been made and new initiatives have been instigated, “there are still significant gaps in the care options available to older people”. Gaps in services available mean that “there is no real choice about the care option that should be selected when a care need arises, and implementation of the most appropriate care is seriously hampered” (1997:306). This is due largely to a lack of investment of resources in services for older people in the early and mid-nineties. It is now accepted by the Review Group that this is no longer an adequate blueprint for the development of older people’s health and social services and in fact action in specific areas of care for older people has been “particularly disappointing” (op. cit.). Despite this recognition the Government hope to encompass the ideas and model suggested in the original report in the forthcoming new Health Strategy (PQ:Frances Fitzgerald 168 ref.no.12541/01).

Source:Adapted from Warner et al, 1998.

A needs assessment is considered to be a fundamental part of any refocused policy in this area, however resources would need to be provided to enable the assessment to be undertaken – this needs to be considered in consultation with the Department of Health and Children (Department of Social Community and Family Affairs, 1998). There is a need for such an assessment to be ‘carer blind’ in the best sense so that the existence of a carer will not lead to the failure to offer services, or lead to their withdrawal.

Budgeting for Equality – The Political Challenge

A Strategy for Equality (1996) has argued that a cost of care allowance should be paid to all carers and people with disabilities to assist with the additional costs associated with caring/disability. The Continual Care Payment proposed in the Review of the Carer’s Allowance (1998) goes some way towards this end. However it is envisaged that this payment would be similar in nature to the Domiciliary Care Allowance (DCA) and paid only in respect of children. The Review Group felt also that this payment should be a “a recognition only of the level of caring and not a contribution towards the cost of caring” (1998:53).

Services in Disarray

Notably many of the services relevant to carers (home helps, meals on wheels and respite care) are discretionary in nature and often rely on voluntary workers. In addition community and hospital services are over-stretched and inadequate; the majority of services require referrals and waiting lists for essential services are often up to one year. Prioritisation for services is usually based on medical criteria alone and in some cases services are not provided if a carer is available (Swanwick and Lawlor, 1998). This situation reflects poorly on the social inclusion and equality objectives outlined in the Programme for Prosperity and Fairness.

From Payment to Recognition

The active participation of carers is crucial for pursuing the social goal of what the OECD (1996a) term “ageing in place”. However this cannot be simply assumed, or regarded as a ‘free good’. There are well-documented costs to care-givers, in time, in stress, and also in their own health. These costs have not been reflected in any government policy to date. There is also a need to consider longer-term forms of compensation and additional support services for carers.

•Social rights, associated with caring responsibilities, are needed to avoid carers becoming trapped into long-term poverty because they have assumed care-giving responsibilities in the past. In many public pension systems such as in Sweden, pension credits are conferred for the time spent in childbearing. In many other OECD countries pension rights can also be earned by those providing care to the elderly. Such recognition of the social value of caring warrants discussion and debate by this government.

•A second need, which applies mainly to carers who are or could potentially be participating in the labour market, relates both to flexible arrangements and the possibility of returning to the labour market. Flexibility in employment includes the possibility of taking leave, of reducing hours of work without major penalties, and having more flexible daily and weekly schedules. Again, policies for the care of young children, limited as they are, have made much greater progress than have those for care of the elderly.

The Carer’s Leave Bill 2000, published on 15 December 2000 is the first sign of recognition of the need for any flexibility in employment. Leave, however is unpaid¹¹. As with other special leave, carer’s leave will be highly correlated with level of benefit. Many low paid workers may not avail of this leave because of the financial loss. If this is the outcome greater inequality will result, with families who need the most support for caring losing out.

•Efforts could also be made to rebalance the gender burden of caring work, as is the case with childcare. The parental leave programme, introduced in Ireland on 3^rd December 1998¹², seeks to provide real incentives to fathers to assume their caring responsibilities, nothing comparable has yet been done in the field of elder care.

•Due to the health consequences of caring, an important part of carers’ needs lies in an adequate infrastructure which makes it possible to cope with the burden of informal caring. The Western Health Board study on informal care noted that very few carers felt their caring role was valued by the authorities (O’Neill and Evans, 1998). Improved respite care – some relief from the constant pressure of care work must be seen as a priority. While several countries have programmes for respite care, Finland goes the furthest, requiring municipalities to provide a weekend of respite each month (OECD, 2000). In Ireland the need for counselling, support, home respite, adult day care, overnight respite (with specific attention to dementia¹³) all require attention. Current systems for providing additional support seem to be far from matching these needs – this is due partly to the failure of the present government to view these needs in a wider cost-effectiveness perspective.

•Crucial to their needs is the recognition of carers as social partners. Continual failure to include carers in the National Partnership Process is difficult to understand. This regrettable scenario has resulted in many carers and their families, living in Dickensian conditions – particularly young families caring for disabled children. It is also indicative of the despair to which so many families have been reduced.

Changing care policy in Ireland to reflect real support for community care initiatives is a value-based and political decision concerning the allocation of resources. Community care, support for carers, and related value-based choices are issues that have been addressed in a slow, incremental and haphazard fashion in Irish policy-making without a clearly formulated understanding of the care-giving role. In principle the challenge of putting in place community-based supports for the elderly is well recognised. However a proper appreciation of the work of carers and the nature of their daily tasks has not yet emerged.

Conclusions

Several studies have recognised the stress involved in the burden of caring although concern about the level of support for carers and carers needs have consistently been ignored. The policy orientation towards community care in Ireland combined with inadequate funding provision places huge additional burden on carers. Failure by the Department of Health and Children to invest adequately in community care has resulted in a situation today where public expenditure is skewed in favour of institutional care. In addition, action in specific areas of care for older people has been seriously neglected. Little effort has been made to shift the focus of policy to support carers or to create targets that narrow inequality for carers as a group.

An important part of carers’ needs lies in creating an adequate infrastructure which makes it possible to cope with the burden of informal caring, current support systems however are inadequate and service provision is disappointing. There has been unnecessary distance between the policy and practice realms in the services provided for the elderly and more specifically in support for carers, so much so that proposed policy directions have not translated into practice.

A needs assessment is considered to be a fundamental part of any refocused policy in this area. Social Policy for informal carers must be seen in the context of overall policy for providing care.

Recommendations

1.The requirements for receipt of the Carer’s Allowance should be reviewed by the Department of Social Community and Family Affairs with a view to abolishing the means-test, on a phased basis, in the next budget so that all carers can receive the payment.

2.Until recommendation 1 above is implemented the Department of Social, Community & Family Affairs should apply the income disregard rules to families where the main earner is employed through a FAS Programme (this income is treated by the Revenue as ‘normal’ income and by the Department as a social assistance payment).

3.The establishment of a National Care Commission is needed. It will be a key way of ensuring that the models of care which the Government advocates are to be realised, improving standards and acting as an effective steward to the system on behalf of carers.

4.In line with the Government’s commitment to ensuring that health and social services are responsive to need a multi-disciplinary approach to caring is needed – integrating medical, social and governmental sectors in care. A Working Group should be established under the Department of Health & Children to identify needs in this area. This Group will define the remit of the National Care Commission and the Findings should be reported by the end of this year.

5.A set of standards for the provision of home care should be developed by the Department of Health & Children and made available by the end of this year.

6.The Department of Social Community and Family Affairs should introduce a Personal Assistance Services Budget – this budget should be available on the basis of need (i.e. non means-tested) to people registered on the National Physical and Sensory Disability Database.

7.On the termination of the Community Employment (CE) Programme by FÁS Personal Assistance Services should be grant-aided on an interim basis under the new Social Economy Programme. (On an ‘interim-basis’ should mean until recommendation 3 above is implemented).

8.The Department of Social Community and Family Affairs should ensure that payment of the Respite Care Grant is extended to all carers by January 2002, regardless of whether they receive the Carer’s Allowance or another social welfare payment.

9.The payment of the Respite Care Grant should be extended to those in receipt of Disability Allowance (DA), living at home whose carer does not receive the grant and who are listed in the National Intellectual Disability Database as in need of respite care. The Department of Social Community and Family Affairs should liase closely with the Health Research Board to ensure this takes place within a twelve-month period.

10.Consideration should be given by the Department of Health & Children to the provision of appropriate respite facilities for children – existing facilities cater almost exclusively for adults and are generally unsuitable for children.

11.Services which have developed since the 1970 Health Act do not have a statutory basis. Core services, including meals on wheels, day care, respite care and paramedical services should be underpinned by legislation and statutory funding.

12.The Department of Health & Children should ensure that by January 2002 Domiciliary Care Allowance is paid on a part-time basis to those whose children spend some part of their week in residential care.

13.The Department of Health & Children should introduce a “flexi care” system – its main aim would be to respond promptly to the home care service needs of people with disabilities and the elderly population in need of such a service. Immediate attention should be given to those who are on waiting lists for home help or respite services and who are receiving either no service or a service which does not meet their needs.

14.The Department of Health & Children should ensure the availability of geriatric specialists in each community care area to provide information, support and assistance to carers. This support framework should be in place by January 2002.

15.The Department of Social Community and Family Affairs should establish, as a priority, speciality or ‘one-stop shops’ to de-fragmentise care, simplify procedures for carers, and provide a central contact for interfacing with relevant agencies.

16.The Department of Health & Children should acknowledge the role of carers by involving carers in the planning of health and social policies for the elderly population and for people with disabilities. To do this carers should be included in the National Partnership Process.

17.Carers should be targeted as a special group for health promotion initiatives. In addition psychological and counselling services should be available to all carers who require them, in each health board area, by the end of 2002.

18.Statutory bodies, local authorities and voluntary groups should be encouraged to establish carers’ support groups or carers’ forums, on a regional and local basis, where carers can provide support for each other.

19.The Department of Health & Children should establish a social work service for the elderly, with responsibility for abuse prevention, carer support and advice. This service should be operational within a two-year period.

20.As a positive indicator of the Government’s commitment to community care the Department of Health and Children should make a commitment to compile figures on expenditure per capita on community care programmes (including expenditure on CA). Over time this can be compared with expenditure on institutional care and nursing home subventions. These figures should be available for comparison by the 3^rd quarter of 2003.

21.The collection of comparable data at a European Level on the social and economic costs of caring as a basis for policy planning should be encouraged, as well as the exchange of information on models of best practice between EU member states.

Appendix 1

The Carer’s Allowance

Background

Source:Department of Social Community and Family Affairs, 1998; Comhairle CID, 2001; PQ 184 ref no. 12515/01.

Carer’s Leave Bill 2000

The main proposals:

Source:Department of Social Community & Family Affairs, 2001.

Appendix 2

The Carers Association

The Carers Association is a national voluntary organisation of family Carers in the home. Founded in 1987, the Association represents family Carers and advocates for greater awareness and support for the work of Carers.

The primary work of the Carers Association includes:

•campaigning on issues of concern to carers

Over the years these issues included managing stress, Carer’s health, and Health Board Supports for Carers;

•lobbying government and preparing annual Pre-Budget submissions

The Pre-Budget Submission to the Government 2000 highlighted the various inadequacies of the Carer’s Allowance (CA). Carers need a tangible form of recognition of their work and see the CA as this form of recognition. Major conflict arises from the Department of Social, Community and Family Affairs’ failure to address this key issue. The Department continues to regard the CA as a social assistance payment for people who need income support and who are also Carers;

•Providing education/training for Carers and people working with Carers

Many carers find themselves in poor health arising from the long-term stress (both physical and emotional) of caring. Difficulties in coping can affect both parties. In addition not knowing where to secure information and supports increases the sense of isolation and powerlessness. For these reasons the Carer’s Association introduced education and/or training for Carers;

•Providing counselling and support

Very few Carers plan to take on their role as Carer. The Association is a lifeline for many Carers under severe stress. The Association put Carers and former Carers in touch with each and provides support for both;

•Providing a Respite HomeCare Service for short breaks for Carers

There is a chronic lack of respite care facilities in Ireland. The pace of change is slow. Many families want greater support at home and home-based respite care services which suit their family circumstances. The Carers Association has been providing a Respite HomeCare Service since 1994 (with few resources, and little funding). The home-based service is tailored to the needs of the Carer and the person cared for at home;

•Providing a HomeCare Assistance Service for Carers under long-term stress

The HomeCare Assistance service provides regular assistance to Carers at home in their caring duties. The HomeCare Assistants each provide practical help to Carers under greatest stress who need regular home-based support to ‘re-charge their batteries’. An important aspect of the service is the control exercised by the Carer. The philosophy underlying the service is one of dedication to meeting the needs of the Carer first and foremost.

Appendix 3

Statistics in Focus

Participation of women in the labour force is lower in all EU countries than is participation by men. Female labour force participation in the EU reached 53 per cent in 1999, compared to 72 per cent for men. The employment gender gap has shrunk to 19 percentage points, compared with 24 points at the beginning of the 1990s. However given that nearly a third of all women in employment work part-time, the gender gap in full-time equivalent terms is still just under 30 percentage points (European Commission, 1999).

Table 1 shows that the overall employment rate for women in Ireland has increased steadily since 1985, although it is still low by EU and OECD standards. Although women are more likely than men to give up paid full-time work to care, women are also more likely to engage in part-time work. Less than one-third of the female population (15-64) participated in the labour market in 1985, 16 per cent of this group were employed on a part-time basis. By 1999 female participation in the labour market had increased to 51 per cent, where 31 per cent were employed part-time. Ireland ranked ninth in the EU in terms of part-time employment in 1999.

Labour force participation varies across countries, it is depressed by caring responsibilities and co-varies with the level of support available. Although the combination of work and caring can be difficult, work is important for carers as it provides an alternative focus. It is also important for carers to retain their involvement in the labour force as average time spent caring is estimated at three years, and the carer will presumably wish to resume work (Department of Social Community and Family Affairs, 1998; Carers Association, 2000).

Table 1: Women’s Participation in the Labour Market.

Part-time employment ranked in descending order by 1999.

* 1985 data relate to 1986

Source: European Commission. (1997;1999). Employment in Europe.

Table 2: Funding provided by the Department of Health & Children to meet the costs of the Nursing Home Subvention Scheme, 1995-2001.

Source: PQ No. 166 ref. no. 12539/01.

Table 3: Health Board Expenditure on Support Services, including Personal Assistance Services, 1998-2001.

Source: PQ No. 233 ref. no. 18020/01.

Table 4: Health Board expenditure on Institutional Care compared with expenditure on Community Care, 1995-2000.

* Figures for Home Help and Public Health Nurses, included under Community Care, are exclusive of non-pay expenditure from 1995-1998.

--- Data not provided by the Health Board

___ Awaiting data

Source: P.Q.315 ref. no.11754/01.

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¹ Department of Social, Community and Family Affairs (1998). Review of the Carer’s Allowance. Dublin: Stationery Office.

² Appendix 3, Table 3.

³ The most recent figures show that life expectancy for females aged 75 is 10.4, and for males aged 75 is 8.2 (Demographic Statistics, Eurostat, 1999).

⁴ For an example, see Jenson, J. (1997).

⁵ See Appendix 3 pp. 27-28.

⁶ The volume of GNP is estimated to have risen by as much as 9¾ per cent last year and the outlook for this year is growth at about 7 per cent (Central Bank of Ireland, Quarterly Bulletin, Spring 2001).

⁷ See Appendix 1 for a background of the Carer’s Allowance.

⁸ Under Section 61 of the 1970 Health Act, Health Boards may at their own discretion, make arrangements to assist in the maintenance at home of people who are sick or infirm or their dependants.

⁹ Under Section 4 of the Nursing Homes Act, 1990 Health Boards are obliged to maintain a register of all nursing homes in its area.

¹⁰ The implementation of EU Equal Opportunities Policy is generally within the remit of individual Member States – the net result has been considerable difference in the extent and content of equal opportunities policies between Member States.

¹¹ Appendix 1 – Main proposals in the Carer’s Leave Bill 2000.

¹² The Commission on the Family (1998) argues that the introduction of a statutory right to paid parental leave would be an important first step towards meeting key objectives such as balancing work and family responsibilities, promoting equality for working parents in the workplace, and sharing childcare responsibilities.

¹³ See Durkan, J. (1999). Dementia Care – Challenges for an Ageing Europe. Dublin: European Institute for Women’s Health; and Ruddle, H & J. O’Connor (1994). Caring without limits? Sufferers of Dementia/Alzheimer’s Disease: A Study of their Carers. Dublin: The Alzheimer’s Society of Ireland & Policy Research Centre.