Committee Reports > List of Committees > Joint > 2003 > Committee on Social and Family Affairs > Report No. 01 - Report on the Position of Full-time Carers

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Samhain 2003

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Houses of the Oireachtas
Joint Committee on Social and Family Affairs

First Report
Report on the Position of Full-time Carers

An examination of current welfare policy and practices, statutory, professional and voluntary support structures, education and training opportunities for carers and the long-term effects of full-time caring on the physical and mental well-being of carers.

November 2003

CONTENTS

Chairman’s Preface

I am pleased that the Joint Committee is at the stage of being able to publish this Report on Carers, one of the areas within the Committee’s remit to which all the members attach a high importance and priority. My colleagues and I have been moved by the submissions we have received from carers and caring institutions while preparing this Report. The difficulties faced by those caring for people with long term disabilities have been made very real for all of us by the many personal accounts given.

Fortunately the situation for both carers and the disabled has improved in recent years. But those families faced, perhaps unexpectedly, with the task of caring for a recently disabled family member still face a bewildering array of fragmented and inadequately publicised State services with many different rules and regulations and types of means testing involved.

There is already a strong Government commitment to major improvements in this field clearly stated in the Health Strategy:

“The Government intends reforming the operation of existing schemes including the Carer’s Allowance, in order to introduce an integrated care subvention scheme which maximises support for home care.”. (p.77)

Furthermore, the Department of Social and Family Affairs published two major reports on Carers and Long Term Care last year and the Minister is committed to major improvements in the situation.

It is heartening that all of us — from carers and carers’ organisations to the Government and including the Joint Committee — want to put more resources into home care and look for better integrated services that are simple to access. The degree of consensus among the major stakeholders is quite unusual. It opens the way for rapid progress in the improvements which we all want.

Finally, I want to thank the staff of the Committee for the outstanding support we received while preparing this Report and especially our efficient and effective former Clerk, Patricia Doran.

Mr. William Penrose TD,

Chairman of the Joint Committee on Social and Family Affairs.

Acknowledgements

The Joint Committee wish to thank all those who made submissions, either orally or in writing, to the Committee, and without whom this report could not have been written. Particular thanks go to the many individual family carers who made the effort and took the time in their very busy lives to respond to our request for information. It is our hope and expectation that the detail of their personal experience, as outlined in this report, will enlighten our understanding of this issue.

Individuals who made submissions to the Joint Committee have not been named in this report in order to preserve confidentiality. Our thanks go to them, and to the following groups and organisations who made submissions:-

Abhaile

Angels Care and Nursing Agency

Care Alliance Ireland

Caring for Carers

Clifden Citizen’s Information Centre and FORUM

Comhairle

Community Connections

DergFinn Partnership / Finn Valley & Donegal Carers

Dublin City Development Board

FLAC - Free Legal Advice Centres

ICA - Irish Countrywomen’s Association

Midland Health Board

National Council on Ageing and Older People

North Eastern Health Board

RCCN Caring Ltd

South West Wexford Community Development Group

Southern Health Board

The Carers Association

Waterford Traveller Community Development Project

West Cork Carer’s Support Group

WITH - Women in the Home

Introduction and Purpose of the Report

In preparing this Report our method of approach was to advertise widely for submissions on the position of full-time carers. Our thanks go to all the many individuals and the twenty-one organisations who responded (see the Acknowledgements for full details). The material provided, including 74 separate proposals and recommendations, was then collated and analysed. It provided the Joint Committee with a lot of information and a very vivid picture of what it is like to be a carer in Ireland today.

The purpose of the Joint Committee Report is two-fold. Firstly, we wished to give a clear account of the many submissions received. In effect we give carers a voice and a public hearing for their views.

Secondly, we intend the Joint Committee Report to be an important input into the significant improvements in supports for carers which the Minister for Social and Family Affairs promised in November 2002. Within the last year the Department of Social and Family Affairs published two valuable Reports on Carers and Care Services. One was a Study to Examine the Future Financing of Long-term Care in Ireland undertaken by Mercer Ltd. (in what follows this is referred to as the Mercer Report). The other Report was written by Professor Éamon O’Shea, UCG, and is a Review of the Nursing Home Subvention Scheme (referred to as the O’Shea Report).

These two Reports, together with the Joint Committee Report, give a sufficient basis for reaching the major decisions needed on the necessary improvements in services for carers. In the final chapter of the Joint Committee Report, we integrate some of the proposals from the Mercer and O’Shea Reports with our own conclusions and recommendations in order to encourage speedy decision-making on the urgent problems of services for carers.

The Joint Committee Report consists of six chapters:

Chapter 1 deals with current welfare policy and practices. There were four main areas of concern regarding current welfare policy and practices evident in the majority of the submissions received. These were the issue of means testing for the Carers Allowance, opportunities for respite and restrictions regarding the respite grant, the issue of pension entitlements in the future and suggestions for a cost of care payment.

In Chapter 2, statutory, professional and voluntary support structures are considered. This area received the most attention in the submissions received, and the issues raised were wide ranging. They included respite, subvention, day-care, co-ordination of services and the need for a national strategy, home helps and personal assistants, the public health nurse and the community care service, counselling, information, aids and appliances, therapy services, early diagnosis and assessment, the input of voluntary organisations, a carers’ register, care plans and care managers, employment and tax issues, an appeals system, advocacy and mediation, transport, consultation, advance planning, social worker involvement, demographics, support groups and communications supports, research issues and the theory and ethic of care.

Chapter 3 reviews education and training opportunities for carers. The Health Promotion Strategy for Older People (1998) recommends this. The main issues raised in the submissions were the costs of training, both financially and in terms of time, the benefits of training for both the carer and the care recipient in improved care procedures, the recognition of the caring role implicit in the provision of accredited training and the long-term benefits to the carer in terms of confidence, marketable skills etc.

Chapter 4 gives a picture of the long-term effects on the physical and mental well-being of carers in the words of three of the submissions received. This is followed by a discussion of the physical, psychological, emotional and social effects of long-term caring.

In Chapter 5 other issues and concerns made to us in submissions from organisations concerned with care and carers are considered. These cover a range of topics submitted by FLAC, the National Council on Ageing and Older People, DergFinn Partnership, Care Alliance Ireland, Southern Health Board, West Cork Carers, Comhairle, Women in the Home, Community Connections and Caring for Carers.

Chapter 6 sets out the conclusions and recommendations of the Joint Committee. It begins by listing the principles which inform these conclusions and recommendations. This is followed by consideration of the main recommendations being made by the Joint Committee. There follows a brief discussion of the financial implications of the recommendations and the chapter concludes by examining the future work of the Joint Committee in progressing these recommendations.

Chapter 1 — Current welfare policy and practices

1There were four main areas of concern regarding current welfare policy and practises evident in the majority of the submissions received. These were, the issue of means testing for the Carers Allowance, opportunities for respite and restrictions regarding the respite grant, the issue of pension entitlements in the future and suggestions for a cost of care payment.

1.1 The Means Test

1.1.1The majority of submissions called for the abolition of the means test for Carer’s Allowance. There were a number of reasons given for this. Even the full rate of Carer’s Allowance is not considered a reasonable income for full-time carers with no other earnings and it is inadequate given the level of commitment and amount of work involved. Many submissions stated that the carer should be entitled to a payment for work instead of an allowance, as the term allowance infers charity rather than right, and the means test is seen as degrading. It was pointed out in one submission that carers receive only a few euro per week more on Carer’s Allowance than someone on Unemployment Assistance, but the full-time carer has to work a 24 hour day, 7 days a week at work which is “quite stressful both mentally and physically”. The means test is also seen as a source of significant stress, with many carers being fearful of the result. Where sudden illness causes the caring situation, the requirement to undergo a means test is an additional stressor. This fear of means testing is related to exposure of their financial situation and then losing control of the outcome. The fear may be unjustified, but it is real. Another argument for the abolition of the means test is that Child Benefit is paid to all parents, regardless of income, yet Carer’s Allowance is means tested. Similarly, Domiciliary Care Allowance is paid to the parents of children with disabilities and is not means tested on the parents’ income. What is different about the caring role in these situations?

1.1.2The introduction of Carer’s Allowance instead of the Prescribed Relative’s Allowance, with the associated relaxation in the means testing, the expansion of income disregards and the elimination of the resident criteria was welcomed in some of the submissions and seen as having a positive effect, as the numbers in receipt of the allowance have steadily increased. However, the numbers of people in receipt of the allowance is very small in relation to the numbers involved in caring. Barriers to take-up of the allowance include ineligibility when in receipt of another Social Welfare payment, exclusion on the basis of overly stringent medical criteria and exclusion on the basis of means testing criteria. The majority of submissions recommend that the Carer’s Allowance should be changed from being an income support to a payment for caring, with an associated assessment of the needs of the care recipient and the carer.

1.1.3An applicant for carer’s allowance must fill in an application form, which expands to several pages. For those not used to filling in forms this one is particularly intimidating. It is very detailed and asks a great number of questions which could put people off. It has been suggested that there are many family carers who have never applied for the carer’s allowance because of the application form.

1.1.4Poverty is a key issue for Family Carers. In many cases, taking on the role of carer has led to a drop in income because the carer has given up work to take on that role, and often does not qualify for any financial assistance from the state. Added to this are the significantly increased living costs e.g. constant central heating where an elderly person is being cared for, special foods, day care costs, respite care costs, home modification costs etc. It is seen as inequitable that a carer who does not qualify for the Carers Allowance because of means testing is put in the position of having to use their own resources to care for the dependent person. This creates a situation where a carer can be saving the Health Service significant amounts of money by caring in the home, while receiving no support from the State and having to use their own funds to support their caring role. It was submitted that there should be no income loss for someone who chooses to care.

1.1.5Even for those in receipt of the Carer’s Allowance there are a number of difficulties. Carer’s Allowance is only paid if the care recipient is cared for full-time. Where twenty-four hour care is needed it is unfair (and would be illegal if the working time act applied to carers) to expect one person to work for twenty-four hours. Although there is a requirement that the care recipient be in need of ‘Full-time Care and Attention’, according to the Department of Social and Family Affairs information booklet on Carer’s Allowance it is neither intended nor desirable that a carer would be expected to provide care on a twenty four hour basis. However the carer may not be absent from the home to attend a training course or to work outside the home for more than ten hours per week and during the carer’s absence “adequate care for the person you are caring for must be arranged”, but where the care of a person is shared only one carer can claim the allowance. This effectively means that despite the acknowledgement of the undesirability of one person being responsible for care on a twenty-four hour basis, the application of the rules for receipt of the Carer’s Allowance lead to just that situation It should be possible to have more than one carer per care recipient and to have a pro-rata payment for carers who care part-time.

1.1.6Added to this is the situation where a carer could be doing double the work by caring for two or more people, but may only get an extra payment of up to half the maximum of the Carer’s Allowance. Carers seem to be losing from both ends at once.

1.1.7A number of anomalies in the wider Social Welfare system were highlighted in the course of this exercise. e.g. payments are made to different categories of carers by both the Department of Social and Family Affairs and the Health Boards. Different rates of payment and different qualification criteria are applied as between Carer’s Allowance, Carer’s Benefit, Domiciliary Care Allowance, Foster Care scheme etc. These anomalies exist because payment is made, not on the assessment of need but on other criteria. These anomalies should not exist.

1.1.8It was suggested to the Committee that whatever payment is made to Carers should a) not be subject to a means test, b) not be subject to a time limitation such as the 15 months limit applying to Carers’ Benefit, c) be an adequate level of income, linked to the level of foster care payment and the Consumer Price Index, d) be payment for work done, e) be based on an assessment of the needs of both the carer(s) and the care recipient(s), and f) be payable to as many carers as the individual situation requires.

1.2 Respite

1.2.1In order to continue caring at home, regular and suitable respite care is required. For many carers this would be impossible without the annual respite grant. The respite grant is payable to those in receipt of Carer’s Benefit or Allowance or Domiciliary Care Allowance, and is payable on a particular date in June every year (the first Thursday).

1.2.2The Social Welfare system allows payment of only one allowance to any person, even if they meet the criteria for more than one allowance or benefit. As a result, some carers are receiving payments other than the Carer’s Allowance, the Carer’s Benefit or the Domiciliary Care Allowance, e.g. the Old Age Pension, but this means that they do not qualify for the respite care grant. These carers need respite from caring just as much as any other carers, and are just as likely to be unable to pay for respite care without the grant. The Respite Care Grant should be paid to any carer regardless of what Social Welfare payment the carer is receiving. Criteria for receiving the grant could be based on medical certification.

1.2.3Anomalies can arise where a person would qualify for the grant except that the payment date has passed for that year, so they have to wait another year. The grant should be payable to all carers as soon as they have met the criteria, and annually thereafter. There is no need for the grant to be payable only on a fixed day per annum.

1.2.4Depending on the particular situation, e.g. dependency level of the care recipient, stress level of the carer, respite is required at varying intervals. However, it is likely to be required more than once a year. In order for that to be possible, the grant would need to be increased. Different amounts were suggested in the submissions, varying from €1,000 per annum to €1,270 per annum, per care recipient.

1.2.5In some cases residential respite care is not suitable for the individual care recipient. This can be due, either to the physical and mental condition of the care recipient, e.g. a person who is confused might suffer considerable distress if their routine was disturbed, or to the lack of suitable respite care places in the locality. In these cases it should be possible to provide respite care in the home, but it was submitted that the respite grant cannot be used to pay for family members, relatives or friends to provide home respite. Some flexibility is required to allow for provision of respite care in the home while protecting the grant system from potential abuse.

1.2.6It was suggested to the Committee that a) the respite care grant should be paid regardless of what Social Welfare Payment the carer is receiving, b) that it should be increased to €1,270 per annum and c) that a pilot scheme be introduced to allow payment of the grant for in-home care, with a view to extending this option nation-wide in due course.

1.3 Pension Rights

1.3.1The issue of Pension Rights is a major concern for many carers. Caring is, in many cases, a life-long commitment, and many carers have given up work in order to take on the care responsibility or were prevented from ever taking up work in the first place. Where the carer is only entitled to a Social Welfare payment because of their caring role, they foresee a future where the person for whom they are caring dies, they lose the payment as a result, and they have no other source of income. If, as would frequently be the case, they are by then elderly themselves, they are afraid of an old age of poverty.

1.3.2A similar situation can occur where the carer is not of pensionable age. If the care recipient is institutionalised or dies, the Social Welfare payment stops immediately, but the carer may not be able to return to work immediately, possibly because there are no vacancies at that time or possibly because they need some re-training having been caring long-term.

1.3.3The introduction of carer’s benefit was welcomed in many of the submissions as it has “allowed for flexibility and interplay between work and caring responsibilities and has ensured secure pension entitlements.”

1.3.4The Homemakers scheme was also welcomed, but there are a number of issues around that scheme which should be addressed. Firstly, it did not take account of those people who began caring before 1994. Secondly, it does not take account of people who began caring from an early age and who never, therefore, had the opportunity to begin work outside the home. Thirdly, it does not take account of carers whose previous working life was spent in the public service and who were, as a result, not paying PRSI at the “full”rate, i.e. they will only be eligible for credited contributions at the same rate as their previous PRSI contributions, which will not qualify them for an Old Age Pension, and they will no longer qualify for their occupational pension. Fourthly, it gives eligibility only to the Old Age Contributory Pension, not to any other payment.

1.3.5The introduction of the Carer’s Leave Act was welcomed as it allows some flexibility in employment, but it is used mostly by people in secure employment. As a result it fails to address the situation of those in less favourable circumstances. In addition, a number of issues were raised in relation to its operation. It was suggested that there is a rigidity in the rules for taking Carer’s Leave, which does not allow for exceptional circumstances or emergencies. A number of potential take-up problems were identified, including the rule that an employee must be employed for 12 months continuous employment, which could exclude some potential carers. The fact that the maximum of ten hours work per week while on Carer’s Leave is likely to be too little to offset the loss of income is also seen as a barrier to take-up, as is the fact that only one carer is allowed to take leave with regard to each care recipient.

1.3.6It was suggested that Carer’s Leave should be treated the same way as leave under the Maternity Protection Act, the Adoptive Leave Act and the Parental Leave Act, all of which allow service during periods of leave to count for annual leave and public holiday purposes. It was also proposed that sections 14 and 15 of the Act, which allow the carer to return to work in the same or an alternative position with conditions not “substantially less favourable” than those of the previous contract the employee enjoyed, should be amended by removing the word “substantially” so that the terms and conditions of the alternative employment should simply not be less favourable.

1.3.7 It was suggested to the Committee a) that the Homemakers scheme should be extended to those people who began caring before 1994 and that credits should be given to them retrospectively, b) that “full” credited contributions (not just homemaker credits) should be given to all full-time carers for the period of caring, regardless of their previous contribution history, i.e. the period of full-time caring should be treated as full-time work and c) that return to work courses should be provided to all non-pension age full-time carers when their caring job ends.

1.4 Cost of Care Allowance

1.4.1Caring costs money, and the higher the dependency of the care recipient, the higher the level of care required, the more money it costs. The Carer’s Allowance and the Carer’s Benefit are income supports paid to carers. As already stated, they do not pay the carer for work done, but nor do they cover the actual cost of caring.

1.4.2Caring is expensive e.g. heating bills, extra laundry, special dietary requirements, day care costs, respite care costs, home modification costs in cases of restricted mobility etc., and carers frequently have these extra expenses on top of lower income (e.g. if they have given up work to care and a spouse’s income prevents them qualifying for Carer’s Allowance, then the household income is lower — in fact even if they receive the Carer’s Allowance their income would in all likelihood be lower). While there are supplements available from the Health Board for special dietary and heating needs, they are not paid automatically, have to be applied for separately, and the heating supplement requires an additional means test.

1.4.3Many of the submissions received indicated a need for additional financial support to cover these expenses, in particular for carers providing a “very high” level of care. It was suggested that there should be an additional direct financial support provided to Carers to compensate them for the loss of potential earnings and to make allowance for the increased material costs of caring.

1.4.4It was suggested to the Committee that there should be a Constant Care Allowance introduced. It would be payable to all full-time carers, non means tested, indexed to the Consumer Price Index, independent of any other Social Welfare Payment, payable on the basis of a medical certificate, should not be counted as means for other entitlements, and start at a minimum of €70 weekly.

1.5 Overall Comments on Welfare Policy and Practise

1.5.1A key criticism of the existing Social Welfare system is that those entitled to another payment may not also receive Carer’s Benefit or Allowance. The policy on social welfare benefits in Ireland only allows people to claim one social welfare benefit at any one time. This issue could be addressed by introducing the proposed Constant Care Allowance and by removing the requirement to be in receipt of Carer’s Allowance or Benefit in order to receive the Respite Care Grant.

1.5.2It was suggested to the Committee that if a person fits the specification of a carer but is in receipt of another Social Welfare payment, then these additional financial supports should be paid.

1.5.3There are economic and fiscal advantages to the state where the family are the key providers of care, but these savings to the State have not been re-distributed to the carers in an equitable manner. Direct payment to carers for work done would recognise the value of the work they do and allow them to purchase other forms of support (e.g. respite care) should they need to do so.

1.5.4It was suggested to the Committee that whatever financial supports are paid to carers, an intrinsic part of the payment should be a recognition of the value of their work.

1.5.5Another issue which was raised by a number of submissions is concern for the health of the carer. It seems to be accepted that carers’ own health is at risk, partly because of the health implications of full-time caring (e.g. lifting where the care recipient suffers from mobility problems), partly because they concentrate on the care recipient to the exclusion of their own well-being, and partly for financial reasons.

1.5.6It was suggested to the Committee that a medical card should be automatically awarded to all carers.

Chapter 2 - Statutory, professional and voluntary support structures.

2The area of statutory, professional and voluntary support structures was the area which received the most attention in the submissions received, and the issues raised were wide ranging. They included respite, subvention, day care, co-ordination of services and the need for a national strategy, home helps and personal assistants, the public health nurse and the community care service, counselling, information, aids and appliances, therapy services, early diagnosis and assessment, the input of voluntary organisations, a carer’s register, care plans and care managers (including suggestions on needs assessment, discharge summaries and records of care), employment and tax issues, an appeals system, advocacy and mediation, transport, consultation, advance planning, social worker involvement, demographics, support groups and communications supports, research issues and the theory and ethic of care.

2.1 Demographics

2.1.1As the population ages and family sizes shrink, a network of local support needs to be put in place rather than very expensive full time institutions. There comes a time for institutional care, but it could and should be minimised.

2.1.2There are reported to be up to two hundred thousand carers “propping up our health services”. Demographic changes - more people returning to work, young people moving away from their families, the change in ratio between young and old — mean that this cannot continue for much longer. We need supports for people to be carers. It cannot be taken for granted any longer.

2.2 Respite

2.2.1The greatest need identified by Family Carers is the need for a break from caring, in home respite and respite for the dependent person. Carers need a life of their own — time off, opportunity for breaks and supports to enable them to continue caring. Included in these supports is respite care, which is necessary for the carer’s own health and well-being. According to the survey carried out on behalf of the Dergfinn Partnership, when asked what they would like as a carer, the greatest number indicated respite and home support, followed by free time. Examples from submissions received of some of the comments on respite are “we got 11 nights respite last year — this is totally insufficient” and “we have not been given sufficient support to enable us to go on holidays”.

2.2.2There are insufficient respite beds available, particularly for high dependency care, to ensure regular and adequate respite breaks for all carers and care recipients. Where respite beds are available, a bed must be booked well in advance and cannot always be made available at a time which suits the carer.

2.2.3In some cases the respite places are not suitable for the category of care recipient (e.g. a child should not be placed in a respite place surrounded by adults, a person suffering from dementia needs a respite place which is physically secure, in case they are confused and inclined to wander).

2.2.4In some cases, the best care of the care recipient will not be achieved by placing them in a respite care facility, despite the need for the carer to have a break.

2.2.5In-home respite care should be an option which is available to all. Respite services in the home are limited by budget but the advantages are numerous. Home based respite care is the preferred care alternative for most care recipients. Provision of respite care in the home would free-up beds for emergency cases or care recipients who need full-time institutionalised care. By providing respite in the home, it would be possible to be more flexible, and to tailor the service to the needs of the individual. Respite care in an institution is normally provided in blocks of a week at a time. In-home respite care could be provided on a daily or nightly agency-style basis. This would allow the carer to opt for a larger number of shorter breaks if that was more appropriate for their situation.

2.2.6At present, services in Ireland are minimal, unevenly distributed and inequitably apportioned as a result. In-home respite care would be particularly suitable in rural areas where there is insufficient demand for a respite care facility, or where care recipients are widely dispersed geographically.

2.2.7In order to provide in-home respite as an automatic option to all carers, it would be necessary to have a pool of carers available. It would also be necessary to review the operation of respite provision on an ongoing basis to ensure that provision is effective and at a standardised level of care. In order to assist in establishing this standard, it was suggested that there should be clear and unambiguous definitions of “carers” and “respite”.

2.2.8Respite care is often the only service which gives carers a break, but it must be tailored to suit the carer and care recipient rather than the service provider. The statutory and voluntary organisations need to work in partnership with carers in the provision of services such as home respite, day care and residential respite care, on the basis of need.

2.2.9Lack of, insufficient or inappropriate respite care can contribute to familial and marital difficulties, and to a deterioration in the carer / care recipient relationship, frequently leading to an earlier demand for long-term residential care.

2.2.10Respite care is undervalued as a cost benefit factor. Without this service, it is likely that carers’ own health would deteriorate and lead to increased morbidity, mortality and demand on the health service.

2.2.11It was suggested to the Committee that sufficient and flexible respite care is made available to carers and their families to allow them to live a “normal life”. Paramount in this requirement is the element of choice.

2.3 Subvention

2.3.1The comments regarding the Nursing Home Subvention Scheme are similar in tone to those regarding respite. It was suggested in many submissions that home subvention should be an option because some care recipients are not suited to a nursing home environment, and the current situation where subvention is paid only to Nursing Homes promotes increased demand. Many people would be willing to care at home if they could receive the subvention. This would, in turn, mean less demand for nursing home beds and enhance discharge planning for acute hospitals.

2.3.2As the population ages and family sizes shrink, a network of local support needs to be put in place as an alternative to very expensive full time institutions. There comes a time for institutional care, but it could and should be minimised.

2.3.3It was suggested that the subvention payments should be made to carers if the care recipient is living at the carer’s home, or to the care recipient. Direct payment to the care recipient would empower them by increasing choices available for their care.

2.3.4It was suggested to the Committee that the results of the pilot programme in Sligo be made public and presented for discussion, and that the Health (Nursing Homes) Act should be amended to allow Health Boards to pay subvention to families who are caring in the home.

2.4 Day Care

2.4.1The main comments on day-care facilities were that there are insufficient places available overall, insufficient places in some geographical areas and insufficient places specifically designed for certain categories of care recipient.Specifically, a lack of day-care facilities was identified in places designed for people suffering with dementia, people with physical disabilities or children and adults suffering with autism.

2.4.2It was suggested that suitable day care facilities should be available locally. It would be preferable for carers and their care recipients not to have to travel long distances. This problem was not confined to rural areas.

2.4.3Another comment is that day care centres need longer opening hours to facilitate carers who wish to work outside their caring role.

2.4.4It was suggested to the Committee that category specific day care centres should be provided locally.

2.5 Personal Assistants and Home Helps

2.5.1The home help service is a vital support to informal carers but the service is challenged by under funding. It was reported that home help has been reduced by 50% due to cut backs. In one Health Board area, the maximum level of home help per week is nine hours for a client requiring full-time care, in another, it is only two hours per week. In many cases home help services fail to materialise at all.

2.5.2Carers need this service to be available, consistent and skilled. Many full-time carers rely on this service and may not be able to cope without it. This means that the cut backs would give a short-term gain for a long-term increase in institutionalization.

2.5.3It was suggested to the Committee that additional home helps should be employed or direct payment made to the carer so that they can pay for private home help.

2.5.4Another difficulty with the service is the inflexibility in delivery. At present home helps are only allowed to work the precise approved hours. If they are authorised to work on Monday morning but the client needs them on Tuesday instead one week and they are willing, they are not officially permitted to change.

2.5.5It was suggested to the Committee that the attendance of the home help should be negotiable between the home help and the carer, as long as the hours worked neither exceed nor fall short of the permitted time.

2.5.6In some cases personal care attendants (to help with getting someone out of bed, washed and dressed etc when they have mobility problems) are required. As with all of the other services, they are excellent when they are available, but they are available only part of the time (in some cases only one day per week) and they are not readily available at weekends or during holiday periods.

2.5.7It was suggested to the Committee that additional personal care assistants should be employed or direct payment made to the carer so that they can pay for a private personal care assistant.

2.6 Early diagnosis and assessment

2.6.1Early assessment of children born with disability is vital. Until they are assessed no help can be given, or help given is in danger of exacerbating their condition. For other care recipients, early assessment or diagnosis and associated early intervention can reduce the need for more expensive supports later on. It must be stressed that this is the most cost effective way of assigning resources. There needs to be a much greater level of co-ordination in the delivery of services across health board areas: a person moving residence from one health board area to another should be able to avail immediately in their new health board area of services to which they were entitled in their previous area without having to go again through procedures to establish that entitlement.

2.7 Counselling / Support Groups / Communications Supports

2.7.1Carers are often isolated and require emotional support, networking opportunities, counselling and easy access to information.

2.7.2One of the most useful measures which can be taken to redress the isolation felt by carers is the establishment of support groups. Self Help and support from groups allows carers to support each other positively and to care more effectively. A network of carer support groups would be the ideal vehicle to ensure best practice. They can also be of immense value in giving a voice to the carer by operating a mediation and advocacy service.

2.7.3Carer’s support groups, which are carer driven and responsive to expressed needs of carers, should be encouraged and supported at local level. Some suggested supports include setting up carers resource centres for information and support, making available venues needed as meeting places for support groups, establishment of dedicated carer help lines etc.

2.7.4In some cases, peer support is insufficient and access to formal counselling is required. It was suggested that a number of services are required at varying times during the caring experience.

2.7.5Counselling and support will be needed by some carers and care recipients at the time of diagnosis. It was strongly argued parents of intellectually disabled children need counselling. Another key time for counselling services is when the care recipient dies, and the carer is bereaved and also has a total change in their life circumstances.

2.7.6For some carers, there is no possibility of attending carer support group meetings, training courses or information sessions, and some form of communication support would be very useful to minimise their isolation.

2.8 Information

2.8.1Carers and care recipients need to be fully informed in order to be able to make appropriate choices, but lack of information is one of the greatest difficulties reported. Part of this difficulty is that information on entitlements and available services is provided by a mix of statutory and voluntary providers of those services. This can cause confusion. One carer reported that finding out about available supports “is like walking through a maze”.

2.8.2A result of this confusion is that some carers are unaware of the supports available and fail to seek support until they reach a stage when they can no longer cope. Whatever complaint may be made about the level and standard of supports available, it is unacceptable that there should be supports available which are not taken up because the carer is unaware of their existence.

2.8.3For many carers, because they are restricted in their own movements, they are unable to go searching for information, and they might not know where to start. For someone who has never needed social services in the past, they may not be aware of the location of local citizens’ information offices or social welfare services offices. They need the information to come to them.

2.8.4There were a number of suggestions made of ways to disseminate information. It was suggested that user friendly, practical information packs be designed and provided to carers outlining all relevant advice, services, support agencies, entitlements etc.

2.8.5The initiative taken by the Department of Social and Family Affairs in 2002 in issuing the booklet on ‘Entitlements for the over 60s’ to all persons over 60 yrs of age was widely welcomed, and the hope was expressed that it will be continued. It was recommended that a similar initiative regarding the ‘Red Cross Directory and Reference Guide to Care’ would be undertaken by making it readily available and by running a high level campaign to ensure carers are aware of their entitlements.

2.8.6Any of these directories could be distributed to carers by whatever agency was the first one to be approached. For example,

○by the Department of Social and Family Affairs when a claim for Carer’s Benefit or Allowance is made (regardless of whether the claim was subsequently allowed) or

○by the Health Board, when a patient is discharged from hospital and assigned to the care of a Public Health Nurse.

○The same information could be made available on the internet, which would have the advantage of being easy to keep up to date and accessible from any location.

2.8.7Regarding information campaigns, it should be noted that for those who are not already carers, an information campaign about caring will mean nothing to them — it is irrelevant and will be ignored. So, information campaigns need to be ongoing to be sure of informing new carers.

2.8.8Another suggestion was that Post Offices could have a one stop shop once a month on pension day where information on a range of social welfare, health services, finances, aids etc., could be made available.

2.8.9In addition to the carers and care recipients themselves, information is also needed by the statutory and other organisations which provide services to carers. It was suggested that awareness training should be provided to all relevant statutory and non-statutory organisations on a regular basis, regarding all relevant issues.

2.9 Co-ordination of Services

2.9.1Confusion can also be caused where there is a lack of co-ordination in service delivery. Co-ordination is needed between the carer and the professional care service to maintain a high level of care. This does not always happen. As indicated earlier in the report, there needs to be a much greater level of co-ordination in the delivery of services across health board areas: a person moving residence from one health board area to another should be able to avail immediately in their new health board area of services to which they were entitled in their previous area without having to go again through procedures to establish that entitlement.

2.9.2One submission reported frequent visits from health board officials to check on the current situation, despite the fact that the GP, Public Health Nurse and physiotherapist were all aware of care recipient’s condition. This is a waste of time and resources.

2.9.3On the other hand, Castlebar General Hospital was commended for providing “an excellent Medical Assessment Unit” to which the GP can refer immediately or by arrangement, and which provides full assessment in one unit. This is ideal for those who have a variety of medical, surgical, dermatological and psychological problems. It means that the client is looked after by all disciplines in one area and at one time. This reduces distress and confusion to the client (and their carer), and allows for a unified approach to the client.

2.9.4Co-ordination is also needed between voluntary organisations and the statutory services. Voluntary organisations have a unique contribution in that they facilitate people in their own communities. Ideally their activities should be compatible with those provided by statutory agencies. This requires an effective interface which is not currently present.

2.9.5It was suggested to the Committee that the voluntary and the statutory providers should develop effective active partnerships built upon the practice of people-centred services.

2.9.6It was suggested to the Committee that carer support groups should work closely with service providers to promote an integrated framework of supports to family carers.

2.10 Care Plans and Care Managers, a National Strategy for Carers

2.10.1 Care Plans and Care Managers

2.10.1.1One of the best methods of co-ordinating services, and of ensuring that the system is designed to serve the client, not the servers, is the development of individual Care Plans for the care recipient and the carer. These should be agreed, with each action and responsibility identified, and the assignment of a Care Manager to individual carers to help them (a) access services (b) prepare a care package for the care recipient and (c) take account of the carer’s own needs.

2.10.1.2According to one submission, “The ideal care plan would be designed in such a way that it respects the competency of the carer, minimises professional involvement, while at the same time maximises the benefits and impacts of services and enhances the quality of life of the [care recipient] and their carer.”, but at a basic level there should be a care plan and both the carer and the care recipient should be aware of it.

2.10.1.3This would require the systematic assessment of needs of both care recipient and carer. At present, an assessment is undertaken for entitlement to services, e.g. home help, but not for the carer’s financial situation or their emotional and physical health and well being. This needs assessment should be reviewed regularly in light of changing needs and / or circumstances, and ideally needs should be addressed proactively as a preventative measure rather than reactively as a response to crisis.

2.10.1.4For the individual carer, already coping with a stressful situation, dealing with service providers can be intimidating. There is often a lack of understanding and collaboration. Service providers have tended to concentrate on the needs of the care recipient, not the carer, and are not generally pro-active in ensuring that carers obtain essential services, entitlements and benefits. Carers should have a right to assessment of their own needs also. The assessment should include nursing, domestic and financial issues, housing, transport etc., to promote quality of life, health gain and social gain within a caring community.

2.10.1.5It was suggested to the Committee that the needs assessment should include the needs and expertise of the carer, as well as the care recipient.

2.10.1.6As with the provision of information as outlined above, there are a number of key points at which this needs assessment could be initiated. These would include those mentioned above, plus instances such as referral by a GP etc.

2.10.2 Consultation

2.10.2.1There should be opportunities for carers to be involved in policy making and service planning. Carers must be listened to and invited to contribute at case conferences and should be involved in the provision of services. The carer is, after all, familiar with the care recipient and is best placed to identify the potential effects of any decision on them.

2.10.3 Patient Discharge Summary

2.10.3.1When a patient is discharged from hospital, the carer and other family members should be fully involved in the decision and be given all necessary contact names and numbers. They should be given information on future care needs and their role should be identified in the discharge letter to the GP. This will be a help in promoting the safe transfer of care from hospital to home.

2.10.3.2Consideration must also be given to the carers ability and willingness to provide care on an ongoing basis.

2.10.4 Record of Care

2.10.4.1A carers Record of Care should be developed in conjunction with the Patient Discharge Summary, where all information relating to the ongoing care needs of the patient are stored. This record would be the property of the carer and entries should be made at each visit to a Health Service provider, or at each home visit.

2.10.4.2Services and supports should be delivered as locally as possible, and drawing up a Care Plan and assigning a Care Manager occurs, at local level, when the individual carer and care recipient have been identified. However, there is a serious need for many “invisible” or “hidden” carers to be identified. This requires the development of a strategy to address the issue of domiciliary care, family carers and care recipients at a national level.

2.10.5 Development of a National Carers Strategy

2.10.5.1Health boards and other agencies need to proactively seek out carers to assist them. A lead person needs to be designated (this may require a new post to be created or the extension of the existing Co-ordinator of Services for Carers role) in Health Boards to co-ordinate development of services. In that regard, the recent appointment by the North Western Health Board of a Project Worker for Carers of Older People in Donegal was welcomed.

2.10.5.2Among the important goals of the National Strategy should be the identification of young carers, to ensure their education and development do not suffer because of their caring role.

2.10.5.3At the other end of the spectrum, the older carers, who are vulnerable to illness and injury because of their caring role, also need to be identified and targeted for additional supports.

2.10.6 Advance Planning

2.10.6.1Part of the National Strategy should be an element of advance anticipation of need e.g. investment now in preparing premises to cater for older people in the community will ensure adequate supports will be in place for our ageing population when required.

2.10.6.2It was suggested to the Committee that a National Strategy for Carers would be drawn up which would contain targets for service development and a plan for co-ordinating support services.

2.11 Public Health Nurse and the Community Care Service

2.11.1The development of the community care service is the key factor to support carers. The need to develop such care services is now becoming increasingly acute because traditional carers (women) are now occupying roles in the workplace. Unfortunately, professional support is usually delivered as a substitute when family care breaks down, rather than offered as a support to carers. There is a need for a parallel and complementary service alongside the role of carer, which is individual, innovative and sensitive, but services around the country are patchy and fragmented.

2.11.2Public Health Nurses play a pivotal role in primary health care. The Public Health Nurse appears to be the main statutory contact for most carers and care recipients and education and support of carers has often fallen to this group.

2.11.3The Public Health Nurse is central and provides an extremely high quality of care, but there are sometimes unrealistic expectations of what they can do given their current workload. There are insufficient Public Health Nurses — numbers appear not to have increased much since 1987 despite the increase in population, and the changing demographic profile of the country.

2.11.4In an ideal situation, the Public Health Nurse should make an initial visit to assess the situation and arrange for any special needs, and then visit regularly for support and to check for changing circumstances. Given the workload and the very large geographic area they must cover, they would benefit from the backup of a larger multidisciplinary support staff, e.g. Occupational Therapists, Community Physiotherapists, Money Advisors, Dieticians, Social Workers etc.

2.12 Therapy Services, Aids and Equipment

2.12.1Where any submission mentioned the therapy services, the general comment was that when the service is received it is excellent, but that it is normally received too infrequently to be of significant benefit.

2.12.2The following are examples of comments on the frequency of delivery:-

○minimum support received from the Health Board for an autistic child — no psychiatric service, no occupational therapy, and only two and a half hours of speech therapy a year

○three visits from the occupational nurse in two years of caring;

○the Occupational Therapy Service is an excellent service, except for the waiting list due to the large number of clients. When the Occupational Therapist visited I learned of all the physical aids that were available, like toilet chairs, bed-tables, bath lifts, etc, which make life so much more comfortable, and make the home so much safer.

2.12.3In some cases, the only support carers need is the provision of appropriate aids and appliances, with instructions on how to use them safely. However, while some Health Boards have been very generous in provision of aids and equipment, others have not.

2.12.4In some cases, the need for equipment has been acknowledged but the equipment has not been supplied due to lack of funding. One example of this is a young woman of twenty-four years of age, suffering from cerebral palsy. Her mother and siblings are all now suffering back pain from years of lifting without the use of a hoist. The woman herself needs an electric wheelchair which has not been sanctioned due to lack of funding.

2.12.5Other carers have reported being made to feel “under a compliment” for receiving basic requirements (e.g. incontinence pads).

2.13 Social Worker Involvement

2.13.1It was suggested that the involvement of a Social Worker would be of benefit in some cases. There is a particular need for help in cases where one of a couple becomes suddenly ill and there are young children in the family. The healthy parent has to deal with a sudden and shocking situation, may need to travel to and from a hospital initially (Donegal to Dublin in this case) and may need childcare to be arranged in a hurry. It is possible that this situation could also be dealt with by a Care Manager.

2.14 Voluntary Organisations

2.14.1The majority of the comments about voluntary organisations were positive, with most submissions commending them but concerned that the lack of funding would have serious consequences for the level of service they can offer.

2.14.2It is generally accepted that the voluntary sector is attempting to fill the gap between available statutory services and growing demand. In Ireland we have a large number of voluntary organisations operating at national and local level. They are vital to the maintenance of existing level of service, and it is strongly recommended that the Health Boards should work in partnership with the voluntary organisations in the provision of day care, respite care, and associated services.

2.15 Tax and Employment issues

2.15.1A number of concerns were raised regarding tax and employment issues. It was suggested that employers should be encouraged to put in place carer friendly work options to allow carers maintain a level of financial independence. It was also suggested that, where these options are not feasible for the employer, an ‘early retirement’ package should be offered instead.

2.15.2There was a proposal to use the term Family Carer when referring to carers “who receive no formal training, are unpaid and provide a twenty-four hour service within the home”. This applies to the Family Carer who has no employment rights, no holidays, no over time and no union support, from professional carers.

2.16 Transport

2.16.1Transport for the care recipient is a concern raised in a number of submissions. For transport to and from day-care, hospital appointments etc. it is not always feasible to use a bus. The care recipient may be mobility-impaired or simply unable to stand for long periods or to step up onto the platform etc. Cars not always suitable for the mobility-impaired and ambulance transport is only available within the same community care area.

2.16.2Associated with this, it was suggested that access to a primary medical certificate should be simplified. This certificate is necessary in order to get a grant for vehicle modification.

2.16.3It was also suggested to the Committee that carers in rural areas should be able to use a subsidised private taxi service through their free travel pass.

2.17 The Theory and Ethic Of Care

2.17.1Implicit in any value we assign to caring should be the fact that it is something with which any one of us may become involved during the course of our lives. For purely selfish reasons then, establishing the necessary support structures and the ethos of care now, will potentially save each one of us a commensurate level of distress in the future.

2.17.2Access to core services should be seen as a right and entitlement, not discretionary. This would have a real effect on the lives of carers. The core services mentioned should include home help, meals on wheels, day care, respite within and outside the home, paramedical services and sheltered housing.

2.17.3“We need a fundamental change in the approach to care and service provision, seeing care as a continuum with supports for independent living and short-term or longer term support for caring in the home and in the community” - Comhairle

2.17.4According to “People Centredness: The Contribution of Community and Voluntary Organisations to Healthcare” by Dr. Fergus O’Ferrall “the existing health care system is in ‘system failure’ and it will continue to fail unless we change our approach to delivering care”. Dr. O’Ferrall argues that the existing healthcare system is based on the requirement for central control, but because of the complex nature of healthcare, central control will always and ultimately fail. He recommends changing to a “people centred” system with community participation and individual responsibility. He goes on to state that “services must be organised, located and accessed in a way which takes greater account of the needs and preferences of the community they serve” and that “health and social systems must be able to accommodate differences in patient preference and encourage shared decision making”.

2.17.5He commends the new health strategy as a good start, but is concerned that the current financial climate will cause a reversion to centralised “command and control”.

2.17.6He further commends the work of voluntary organisations in Ireland as operating from the ‘ethic of care’. He defines this as the idea of human dependency and argues that instead of relying on the ‘ethic of justice’ which is a rights based approach, we should value the ethic of care because “dependency is part of the human condition, and those who are dependent need care, and care needs intimacy and contact.” “If we rely on the ‘ethic of justice’ we stand back and invoke general principles, whereas if we rely on the ethic of care we focus on empathy. This lends itself to more sensitive responses, more attuned to the particular needs and circumstances of the dependent person and the health and personal social services.”.

2.18 Other Comments

2.18.1It appears that the main problem with the existing support services is that people in need of care are divided into two categories, those who are in receipt of care directly from the statutory services and those who are not. Where care is provided directly, there is direct responsibility to ensure that the care recipient is properly cared for and the employees of the service are protected by relevant employment legislation.

2.18.2Where care is given on a voluntary basis or by a family member, the responsibility of the statutory services appears to be diluted by being one step removed from the situation. But the care recipient is just as entitled to an appropriate level of care and the voluntary carer should be afforded as much protection as an employee, for the sake of justice and for pragmatic reasons also, to ensure that they can continue in that role.

2.18.3Caring in the home maximises quality of life for the care recipient, and the return on investment in having people cared for in the home rather than by the State justifies an investment in supporting carers to provide care at home.

Chapter 3 - Education and training opportunities for carers.

3Carers, just like any other care providers, need to be given the skills and training appropriate to that role. The Health Promotion Strategy for Older People (1998) recommends:- “All carers should be appropriately trained, in areas such as personal care skills, nutrition and cardio-pulmonary resuscitation, and should have ready access to advice and support”.

The main issues raised around the subject of education and training for carers were the cost of training, both financially and in terms of time, the benefits of training for both the carer and the care recipient in improved care procedures, the recognition of the caring role implicit in the provision of accredited training and the long term benefits to the carer in confidence, marketable skills etc.

3.1 Costs

3.1.1The possibilities for training and education are limited by the circumstances of caring and by the lack of an alternative carer, particularly in remote areas. Many carers have no time to attend courses because they cannot find anyone else to care temporarily while they attend the course, and could not afford to pay them even if they could find them.

3.1.2It was noted in some submissions that there is a high demand for IT training. The availability of technology should make training easier in some cases as the carer could do some courses via the internet, but this is only suitable for some types of course and many carers have no access to IT or the internet. Also, this type of distance learning does not allow for the social benefits of attending a course with other people.

3.1.3Course time delivery is another barrier to attending courses, particularly where courses are held during the working day, when alternative carers are less likely to be available.

3.2 Benefits

3.2.1Among the benefits of training are the improved level of care and better care procedures resulting from training in manual handling, use of equipment (aids and appliances), provision of personal care, first aid, management of peg tubes, catheters etc, behavioural management training and alternative communication.

3.2.2It is accepted in all of the submissions received that training would improve the quality of care and the quality of life of carers and care recipients; increase the carer’s knowledge, understanding and skills; improve awareness of safety issues; reduce accidents; increase confidence and assist in coping. In particular, training in dealing with dementia is an effective method of relieving stress in the carer and therefore a cost-effective method of delaying the requirement for institutional care.

3.2.3It must be remembered that most carers have little or no preparation for caring. They take on the responsibility with no idea of what is in store for them, and often at very short notice. Training is required in order to provide them with information on how to handle their particular situation, to give them basic nursing skills and by doing so to give them confidence and thereby reduce potential stress. Training should also inform the carer about available services and introduce them to the relevant statutory service providers.

3.3 Recognition

3.3.1Properly accredited training for carers would formally recognise the value of caring work. At the moment, the training provided varies from area to area.

3.3.2Demographic profiles illustrate the growth in the numbers of the elderly. When these people need supports, the training of family carers will be an essential part of the provision of safe, quality care.

3.3.3Training needs to be co-ordinated and developed, responsive to local needs and following best practise. It would be useful if there was a national policy on training for formal social care workers and informal carers, with a standardised system of training.

3.3.4It was suggested in a number of submissions that Health Boards should ensure that training is offered (possibly through partnerships with local training institutes) to informal carers. This training should have an emphasis on accessibility and a recognition of qualifications gained.

3.3.5Information and skills training provided by the local Health Board in this manner would assist in integrating the family carers into the care team, and by becoming a member of the team the carer is recognised as an equal. This is essential for building the confidence of the carer and increasing their trust in the services.

3.4 Long-term benefit

3.4.1Among the long-term benefits of training for carers are the potential for establishing carer support groups as a consequence of the training programmes. Active support groups have the advantage of pooling of knowledge and skills, social interaction with people in similar situations and advocacy. The more active support groups there are, the less isolated the individual family carer will be.

3.4.2Recognition for skills gained in caring, with accreditation at a nationally recognised standard of excellence, would provide the carer with a marketable skill if and when the time comes that their family caring role is over. This in turn would allow them to re-integrate into the work place sooner. Nevertheless, some additional training may be required, particularly for the long-term carer, prior to re-entry into the labour force.

3.4.3It was strongly argued that training for carers in relaxation, communication, dealing with challenging behaviour, self esteem, listening skills and personal development could help to move the carer away from their negative experience of caring, which has a negative effect on the carer, the care recipient and their families and friends, and towards a more positive experience.

Chapter 4 - Long-term effects of caring on the physical and mental well-being of carers

4The long term effects of caring on the physical and mental well-being of carers can best be expressed in their own words. The following are extracts from three of the submissions received.

4.1 First Case History

4.1.1For at least 8 years before his death in 1988 my father was a full-time carer of my mother who was in poor health. He cared for her twenty-four hours a day, seven days of the week and fifty-two weeks of the year. In the process he neglected his own medical needs and when he did attend to them it was too late.

4.1.2Three months after my father was no longer able to care for my mother he died. Clearly he had kept caring for my mother for the previous couple of years by will power alone. [The writer of the submission then took over caring for his mother].

4.1.3A sample of the difficulties encountered included: my father’s reluctance to have anyone other than family into his home to help out and a strong desire to end his days in his own home; my mother’s inability to cope with a nursing home environment; problems relating to the availability of people who were helping out; problems organising time off from work for hospital visits etc; and difficulties in reaching family agreement on the best way of dealing with matters.

4.1.4At the start of my period of caring I was a young 43 year old. I was very much into an active, outdoor life and competing at the highest level of my chosen sport. By the end of my period of caring I was an old, housebound 48 year old. Around this time I ceased playing my chosen sport and, as a result, became at least two stone overweight.

4.1.5I am conscious of the fact that my situation was much better than that of a lot of carers. I got good support from family members, my boss at work and friends. At all times my parents possessed a certain level of mobility and tried to make things as easy as possible for me. Financially, our circumstances were reasonably good. Despite all that it was a very, very tough time physically, emotionally and mentally.

4.2 Second Case History

4.2.1I now realise the amount that carers have to do. It is not the big things like bathing, dressing, etc, it is the small continuous jobs that seem never ending, especially for someone who cares for someone with dementia, severe intellectual disability, etc. It is not being able to do the small things like going for a walk, meeting a friend for coffee, going to the hairdresser. It is a continuous battle against all the usual range of emotions:-

4.2.2Anger at not being recognised for what you do. This could be easily rectified by an acknowledgement by the Government / health board. This would not necessarily mean monetary reward, but an occasional letter, enquiry as to how ‘I’ am as opposed to my mother.

4.2.3Guilt at wanting a life of one’s own. We are people too. We have had a life before becoming full-time carers, and we want it back. Not necessarily all the time but a week or two a year would be very nice.

4.2.4Depression and trying to cope with the feeling of isolation, tiredness, monotony is extremely draining. It would be nice to know that for one week in June that I could have a normal life. What carers have is not normal.

4.2.5Acceptance of this way of life leads to a feeling of powerlessness, staying quiet, doing a fulltime unpaid job, and not expecting any reward, either financially, or by recognition. We have chosen to do this, or we have no other option than to put our loved one into long-term residential care, if a place is available. I for one don’t want that, but what is the alternative?

4.3 Third Case History

4.3.1Caring can be a very lonely role for anyone. You are isolated, often without anyone to talk to or to share your worries and fears when you are stressed and up all night for weeks on end. You get exhausted and worn out. Nobody seems to care. The five hours of home help is a drop in the ocean when you work twenty-four hours every day. I have been doing this for so many years now that I am getting old myself, not to mention tired and worn out. Who cares for the carers? I don’t know — I think nobody does.

4.4 The long-term effects of caring

4.4.1The long-term effects of caring can be divided into physical, psychological, emotional and social effects.

4.5 Physical Effects

4.5.1The long term physical effects of caring centre largely around continued physical exhaustion. Some carers never get a full night’s sleep, particularly in cases where the care recipient is confused and likely to wander in the night, or where their condition requires attention during the night, e.g. for turning in the bed or administering medication etc.

4.5.2This tiredness is exacerbated in cases where the care recipient suffers from mobility problems. Caring for mobility impaired people requires a lot of assistance in physically moving, lifting, turning the care recipient. Even for those trained in handling techniques this is tiring, but for those not trained it can lead to injury, particularly back and neck pain.

4.5.3The other main concern regarding the long-term physical effects centres around the possible lack of self-care by the carer. Family Carers are known to focus primarily on meeting the needs of the care recipient, often to the detriment of their own health, and they have been identified as an “at risk group” in terms of unmet health care needs (Dr. David Evans — Informal Care in the Western Health Board, 1999)

4.6 Psychological Effects

4.6.1The long term psychological effects of caring include feelings of isolation and exclusion, constant anxiety about the care recipient and also about their own future, stress, depression, despair and a consistently low level of morale. The feelings of isolation and exclusion arise partly from the feeling that no-one else can ever understand their situation unless they have experienced it themselves. In addition, many carers are, in fact, physically isolated because they are confined to the house with the care recipient.

4.6.2Some carers are finding it increasingly difficult to deal with their situation, for various reasons. The uncertainty about the future for themselves and the care recipient leads to high anxiety levels. Carers of children with life-long conditions (normally their parents) are terrified of the future, because they foresee a time when their child will have no-one to care for them. Even when the carer gets some respite time, they are frequently unable to relax because they are so used to being constantly in the caring role, constantly responsible for someone else’s well-being. In this situation it is very easy for the carer to become a patient themselves.

4.6.3When caring for people suffering dementia, particularly highly dependent people, carers suffer major strain and psychological distress. Features of Alzheimer’s disease such as hallucinations, depression and changes in behaviour are related to this increased distress and to a decrease in the carer/care recipient relationship. The cognitive problems of Alzheimer’s disease may also contribute to this burden, because they can lead to a break-down in communication between the carer and the care recipient. Communication between carer and care recipient is vital to the relationship and can be difficult where the carer lacks understanding or the care recipient has memory problems or speech disability. Where the relationship between the carer and the care recipient is a close one, the amount of distress caused by this deterioration in the relationship is increased.

4.6.4Carers in general can suffer from low morale, and this is aggravated when the carer is living in the same house as the care recipient, but can be improved when the carer is satisfied with the level of help received from relatives.

4.7 Emotional Effects

4.7.1The carer can, over the period of caring, experience a whole range of emotions, but the most commonly reported feelings are of anger, fear and guilt.

4.7.2Anger is experienced on behalf of the care recipient on ocasions when there is a perceived lack of respect shown to the care recipient, or the service providers are believed to be uncaring or incompetent. Anger is also often felt on the carer’s own behalf, and can be directed at the statutory services, at the care recipient or at the general “situation” in which they find themselves. An example of this is detailed in the following extract from one submission:-The bond that exists between the carer and the care recipient

“places the State in the position whereby it is able to take advantage of the carer. The carer becoming a source of cheap, slave labour. The state knows that carers in general are powerless by the nature of their work, commitment and emotional attachment and therefore unable and unlikely to make meaningful protest. There is no possibility of carers going on strike. This makes carers vulnerable.”

4.7.3Anger can also be directed by the carer at themselves for the way in which they have reacted to the caring situation, and this can lead to feelings of self-blame and guilt.

4.7.4Feelings of guilt are experienced by almost every carer, for a variety of reasons. The carers sometimes blame themselves for the condition of the care recipient, feeling that if they had done something more, or spent a little longer with them, perhaps they would not have become ill in the first place. They frequently blame themselves for their own need of respite, and for their feelings of relief when they get it and “escape from” the care recipient. Unfortunately, these feelings of guilt can, on occasion, be played upon by other family members or by the care recipient.

4.7.5Although carers frequently feel “tied down”, these feelings of guilt can sometimes lead to a carer being unwilling to take an opportunity for respite when it is offered. Carers need a considerable amount of reassurance that they are entitled to a life of their own.

4.8 Social Effects

4.8.1For carers, the ordinary aspects of life are a luxury. Things that other people take for granted are quite difficult to organise, and this impacts adversely on their social life. Carers lose friends because they are unable to participate in normal things like playing sport, going to the cinema, having a drink after work etc. This is partly due to lack of income, but mostly because there is no alternative carer. In fact, for carers, a social life is virtually non-existent.

4.8.2The lack of social life is particularly lonely for the single carer who has little contact with anyone other then the care recipient, but it has other difficulties for the married carer. Caring significantly changes the pattern of family life and impacts on daily activities, not just holiday and leisure plans. Someone has to be at home at all times, evenings, weekends, holiday weekends, winter and summer. For a carer who is one of a couple, this means that any social life they have is usually separate from their partner.

4.8.3The life of a full-time carer (especially in close family situations) is fully determined by the needs of the care recipient.

4.8.4For those carers who have other employment, many find that their job is a therapy as it distracts them from their worries about the care recipient, and it adds a certain level of normality to their lives. However, holding down a job is dependent on a large amount of flexibility and understanding on the part of employers and colleagues because carers have to be able to take leave at very short notice. Those carers who have employment under these conditions are the lucky ones, because many have had to forego opportunities for work outside the home for lack of an alternative carer.

“If Family Carers are to continue to provide care for individuals in their own homes it is essential that efforts be made to promote their physical and mental health and well-being.”

Chapter 5 — Other Issues and Concerns

5Among the submissions received there were a number of other issues and concerns raised. These included a suggestion for Constitutional support for carers (FLAC), a proposed register of carers (National Council on Ageing and Older People), the demographics of caring (DergFinn Partnership), people centredness, valuing the ethic of care and increasing social capital (Care Alliance Ireland), the necessity to recognise carers as “key partners in the provision of care” (Southern Health Board), the requirement for co-ordination of services between responsible Government Departments (West Cork Carers), the increasing unsustainability of the traditional care system (Comhairle), the validity of the care recipient’s desire to be cared for in the home (WITH), the challenge for the future (Community Connections) and a call for a National Strategy to support carers (Caring for Carers). The details of these suggestions are outlined below.

5.1 Constitutional Support

5.1.1The current provisions of the Constitution do not establish any rights for carers. Article 41 (dealing with the family and women in the home) has not been of any particular assistance even to women working exclusively in the home. The Constitution Review Group has recommended that the provisions be made gender neutral and has suggested that it be re-worded as follows: “The State recognises that home and family life gives to society a support without which the common good cannot be achieved. The State shall endeavour to support persons caring for others within the home.”.

FLAC

5.2 Register of Carers

5.2.1According to the pilot census survey in 1999, approximately 131,000 people in Ireland are involved in care-giving to some extent. According to the survey conducted on behalf of the National Council on Ageing and Older People, in 2000, there are approximately 97,000 carers of elderly people, and approximately 22,000 older people suffering from dementia. More than one third of reported carers are themselves over 60 years of age. But there is no comprehensive register of informal carers, so it is difficult to establish a true picture of the situation.

5.2.2Demographic trends (e.g. ageing population, increasing number of women, especially married women, in full-time employment etc) can be expected to have an effect on the level of caring in the future.

5.2.3Caring is a process which changes over time and across different stages of the caring sequence. Caring needs will vary over time and will depend on, among other things, levels of dependency, the age of both carer and care recipient, the relationship between carer and care recipient and the need for institutional care. Health and social services need to work more closely with carers and care recipients in order to manage the process more effectively, but in order to do so they need to know who they are dealing with.

National Council on Ageing and Older People

5.3 The Demographics of Caring

5.3.1This information is based on a survey undertaken by the Dergfinn Partnership in Donegal and Tyrone.

5.3.2According to the responses they received in their survey, the care recipients included people who suffer from Alzheimer’s disease or other dementia, cerebral palsy, cystic fibrosis, old age, hypertension, learning disability, physical disability and multiple sclerosis.

5.3.3Of the carers surveyed, 81.4% were female and 18.6% were male.

5.3.4Carers in the survey range in age from 20 to 79 with the majority being between 40 and 59.

5.3.571.2% of the carer’s were married, and so had other family responsibilities.

5.3.6Carers were mostly caring for parents, parents-in-law, spouses, siblings and siblings-in-law. “The high level of direct relationship with Carees often means that the Carer has been ‘landed with the job’ and that their life is ‘sacrificed’ for the benefit of the rest of their family group.”

5.3.7Some carers had been caring for over thirty-one years.

5.3.8Most carers lived in the same house as the care recipient.

DergFinn Partnership

5.4 People Centredness and the Ethic of Care

5.4.1“We are dealing with a group of people who are absolutely exhausted. All that they ask of us is that we make a difference, no matter how small, to their lives”.

5.4.2The Care Alliance Ireland submission spoke of people centredness and the ethic of care, as explained in the paper “People Centredness: The Contribution of Community and Voluntary Organisations to Healthcare” by Dr. Fergus O’Ferrall of the Adelaide Hospital Society, Tallaght.

5.4.3A people centred approach “demands public policy responses that are place and people specific and deeply grounded in local needs and circumstances”. The new health strategy is a good start in developing this sort of approach, but the danger is that in the current financial climate it will start to revert to centralised control.

5.4.4We need to revalue the ‘ethic of care’. We tend to concentrate on rights — ‘the ethic of justice’ almost to the exclusion of the idea of human dependency — ‘the ethic of care’ but dependency is part of the human condition, and those who are dependent need care, and care needs intimacy and contact.

5.4.5If we rely on the ‘ethic of justice’ we stand back and invoke general principles, whereas if we rely on the ethic of care we focus on empathy. This lends itself to more sensitive responses, more attuned to the particular needs and circumstances of the dependent person and the health and personal social services.

5.4.6Voluntary organisations operate from an ethic of care and their unique contribution is that they facilitate people in their own communities. Ideally their activities should be compatible with those provided by statutory agencies. This requires an effective interface which is not currently present. Both the voluntary and the statutory providers need to develop effective active partnerships built upon the practice of people-centred services.

5.4.7We need as a nation to continue to release the potential in people to care, but we also need to value the huge contribution Carers make to the overall ‘social capital’ of our Health Service.

Care Alliance Ireland

5.5 Partners in the Provision of Care

5.5.1Caring will affect many of us, irrespective of our job or status, and every caring situation is unique. Approximately three out of five of us will become carers at some point in our lives. Caring is about relationships, but there is also a harsh economic reality. Many carers have given up work to care and many struggle to make ends meet. In order to get the support they need, an important issue for carers is recognition of the valuable work they do. “Carers need to be recognised as key partners in the provision of care.”

Southern Health Board

5.6 Co-ordination of Services

5.6.1 Carers show signs of being overwhelmed by the physical, emotional, and financial demands of caring and are feeling increasingly isolated and alone. Unfortunately, the reality appears to be that if you are seen to cope you are left to cope. In order to properly support carers it is important to have coordination in the delivery of services. We recommend close links between the Department of Social and Family Affairs and the Department of Health and Children in order to meet the needs of carers.

West Cork Carers

5.7 Unsustainability of Traditional Care

5.7.1Traditionally, low labour market participation rates among women have provided the underpinnings of the informal care model in Ireland. Current demographic trends [population ageing, increased life expectancy, increase in number of women participating in the labour market, falling birth rate] will lead to an increase in the need for care services and a decrease in the supply of those services by the traditional care providers (mostly women). The traditional care model is becoming increasingly unsustainable as the number of those who need care increases while the number of those who are available to provide largely uncompensated informal care decreases.

5.7.2There is a strong case to be made for supporting carers on the basis that care at home is the preferred option of many. There are also economic arguments in favour of this approach. However, there are key aspects of the carer support system that need to be enhanced and developed.

Comhairle

5.8 Validity of the Desire for Home-based Care

5.8.1People in need of care should not be forced into institutions if there is an alternative which is both financially viable and supportive of their independence. The choice to be cared for at home by a relative should be recognised as valid by the State. This includes recognition for the work of the full- or part-time at-home carer. People in need of care could be awarded “caring vouchers”, consisting of blocks of income and pension and social welfare credits, which they can use to purchase home help, at-home carers, or institutional care.

Women in the Home (WITH)

5.9 The Challenge for the Future

5.9.1A large number of Carers have gone unsupported, both financially and without support services, for many years. The caring role was often thought of as a traditional thing that people ‘ought to do’. Carers are dedicated individuals and families who have given up other opportunities to fulfil their vocational and compassionate role as Carers.

5.9.2Without adequate supports being in place, Carers have in many cases fallen into a trap of isolation, poverty and illness. Our challenge now is to put adequate financial, health service and social supports in place for Carers to alleviate the legacy of the past and to ensure that supports are in place for the future to prevent the mistakes of the past being repeated.

Community Connections

5.10 A National Strategy

5.10.1Caring for Carers call for the establishment of a National Strategy to support Family Carers, underpinned by legislation and with financial commitment to support caring in the home. The Carers Charter provides a basis for this.

Caring for Carers

Chapter 6 — Conclusions and Recommendations

6Different carers respond differently to the caring situation and / or their situation could be different. Over the caring period carers can experience a range of physical and mental symptoms and emotions. They can be physically exhausted, emotionally drained, frustrated, stressed, guilty, blamed by care recipient, or alternatively, energised, positive about their understanding of the care recipient and how they have dealt with problems arising during the day, relaxed and calm in their dealings, exhilarated, satisfied with their accomplishments and feeling that they are a positive influence in the life of the care recipient. It should be the aim of all statutory and voluntary support services to move the carer away from the negative experience of caring, which has a harmful effect on the carer, the care recipient and their families and friends, and towards a more positive experience.

How this can be achieved is considered in the rest of this chapter.

6.1 Principles underlying the Joint Committee Recommendations

6.1.1Before proceeding to the detailed recommendations of the Joint Committee, it is important to set out the major principles accepted by the Committee in its work. These have been delineated with great clarity in the O’Shea Report and we accept them unreservedly. They are three in number:

6.1.2Funding should not determine care requirements; rather care requirements should determine funding. Of course, the financial circumstances of the Government of the day must be taken into account if realistic proposals are to be made. It must still be made clear, however, that the needs of carers are our first priority. For Ireland, which is one of the richest countries in the European Union, it should surely be possible to fund services for carers which at least are equal to those provided for years by many EU states less wealthy than ourselves. Currently this is not the case.

6.1.3There should be a built-in bias towards home care solutions while retaining a capacity for financing care in institutionalised settings. It has been Government policy for a number of years that as much care as possible should be given in the community rather than in residential institutions. Despite this, the structure and regulations for funding have a current bias in the other direction towards institutionalised care. The O’Shea Report makes it very clear how this has happened and how it can be reversed. We give further consideration to this in our detailed recommendations.

6.1.3.1Access should be on the basis of need and should not be impeded by an inability to pay, or by geography. It is argued in the O’Shea Report that “all older people, irrespective of income or wealth, should be entitled, on the basis of need assessment, to essential community services, unimpeded by the ability to pay” (O’Shea Report, p.99). The Joint Committee strongly supports this view.

6.1.4As explained earlier, the submissions made to us included 75 proposals or recommendations for improvements in services for carers. The Joint Committee would support most of these and especially the proposals made earlier in this report. For rapid progress it is important, however, to prioritise and to concentrate on just a few major proposals. In what follows we concentrate on 15 recommendations.

6.2 Recommendations

The following are the recommendations of the Joint Committee:

6.2.1 Means Testing

6.2.1.1As was explained in chapters 1 and 2, most of the submissions which we received called for the abolition of means testing and for carers to have access as of right to care services and payments. It was pointed out that the Domiciliary Care Allowance is paid to all parents of disabled children without a means test; similarly the medical card is available to all the population over 70. Carers find the means test degrading, very stressful and exceptionally complicated. The basic application form is several pages long and different means tests are used for different services by the health boards and other agencies. The point is also stressed in the O’Shea Report (p.68).

6.2.1.2The Mercer Report argues against means testing and in favour of universality for long term care using the following three arguments:

○For older people in Ireland, average incomes are low with over 90% at €254 per week or less. Means testing is an effective way of distributing resources only when incomes vary widely with many rich people and a few poor on whom resources can be targeted. This is not the case in Ireland for this older age group.

○The State already provides universal eligibility for public hospital services and it is inequitable to give people free care for a heart attack or cancer and yet refuse such care for Alzheimer’s Disease or for the long term effects of a stroke.

○Means testing is always a very high cost procedure requiring many resources both with the Department of Social and Family Affairs and the Health Boards. With universality these resources would be released for other uses.

6.2.1.3The Joint Committee recommends, in principle, having given due consideration to the submissions made to it, that means testing for the Carers’ Allowance be abolished.

6.2.2 Subvention for Home Care

6.2.2.1All the submissions which we received and the whole framework for the work of carers is concerned with maintaining the disabled in their own homes. Yet the services and payments currently provided may often force people unnecessarily into long term institutionalised care, regardless of the preferences of the disabled and their carers. Fortunately this is not a battle for change which has to be fought alone by the Joint Committee. The Government has been committed for some years to a shift towards care in the community. As the Mercer Report puts it:

“A significant shift in financing towards home care services is needed, in line with customer preference and Government policy” (p.6)

6.2.2.2The Joint Committee, taking cognisance of the submissions made to it and to the Mercer and O’Shea Reports, recommends a significant shift of resources towards home care and, in this context, recommends the establishment of a home based subvention payment.

6.2.3 Needs Assessment

6.2.3.1Once means testing is abolished and universal entitlement put in its place, it is essential to have a clear, objective and measurable way of assessing the need for long term care. Without such measurement, which is widely used in many countries, it would be impossible to decide where to direct Government resources to ensure that those in greatest need got the highest level of services and payments. In the submissions which we received (see chapter 2) there was concern that any such assessment should apply to carers as well as to those being cared for. Another point related to therapy, aids and equipment where there were often long delays in provision because needs were not properly assessed at the start and at regular intervals.

6.2.3.2The Mercer Report considers needs assessment so important that a whole chapter is devoted to it. Mercer makes it clear that currently there are many different needs assessments for different services in Ireland with a grave lack of consistency among the various agencies including the Health Boards.

6.2.3.3The Joint Committee recommends strongly that a consistent and comprehensive system of needs assessment must be established in Ireland.

6.2.4 Consumer Choice

6.2.4.1The submissions we received from individual carers show very clearly the wide variety of circumstances which exist for those with different types of disability and for their carers. There is no way in which “one size fits all” regulations and provisions will be effective in the care of this very diverse group. Both the Mercer and O’Shea Reports call for services and benefits that are more flexible and more responsive to the particular needs of individuals and their families. This is also a very strong message in the submissions which we received. A good example of this is respite care where, as we show in chapters 1 and 2, families urgently need a variety of different types of respite care, both institutional and at home, and for varying time periods while the current inflexible regulations put enormous stress on carers who cannot get time off when they need it. More flexibility is more a matter of attitude and the will to change, than the necessity of extra finance. The Joint Committee supports strongly a change in this area towards much greater flexibility.

6.2.5 Payments of Carers’ Allowance to persons in receipt of Social Welfare payments

6.2.5.1The Joint Committee recommends that, where persons who provide care are recipients of widows’ or widowers’ Social Welfare payments, 50 per cent of the Carers’ Allowance should be paid.

6.2.6 Carers’ Benefit

6.2.6.1The Joint Committee recommends that, where a person gives up a job to provide care, the 15 month restriction on payment of Carers’ Benefit be waived where the person continues to provide care.

6.2.7 Respite Care Grant

6.2.7.1Everyone is entitled to a break from their work and, unfortunately, many carers cannot avail of that respite break due to lack of resources or beds or because they find that they are not entitled to the respite care grant.

6.2.7.2The Joint Committee recommends that the Respite Care Grant should be paid to any carer regardless of which Social Welfare payment the carer is receiving.

6.2.7.3The Joint Committee further recommends that the strict payment date, which can sometimes result in carers narrowly being disallowed for the Respite Care Grant be removed.

6.2.8 Travel

6.2.8.1The Joint Committee recommends that carers in rural areas should be able to use a subsidised private taxi service through their free travel pass.

6.2.9Information for Carers and Care Recipients

6.2.9.1The Joint Committee recommends that user friendly, practical information packs be designed and provided to carers, giving relevant advice and setting out information on services, support agencies, entitlements etc.

6.2.9.2The Joint Committee recommends that such information packs be distributed to the individual carer by the first agency (either the Department of Social and Family Affairs or a Health Board) he or she approaches, and that the information also be made available on the internet.

6.2.9.3The Joint Committee recommends that Post Offices operate a “one stop shop” once a month on pension day at which information on a range of relevant services and facilities would be provided.

6.2.9.4The Joint Committee recommends that the pension book be used as a medium for disseminating information to care recipients on their care entitlements.

6.2.10 National Strategy

6.2.10.1The Joint Committee recommends that a national strategy be developed for family carers.

6.2.11 Co-operation

6.2.11.1The Joint Committee recommends that health and social services work more closely with carers and care recipients in order to manage the process more effectively and that carers be recognised as key partners in the provision of care. In the context of applications for Carers’ Allowance, a more realistic and commonsense approach must be taken to the time spent providing care and the distance travelled by the carer to afford the care.

6.2.12These recommendations of the Joint Committee subsume very many of the proposals made in the submissions to us and mentioned in the earlier chapters of our Report. We are convinced that major action on these particular recommendations alone would radically improve the situation now faced by carers and those being cared for.

6.3 Financing

6.3.1The Mercer Report deals in detail with how the necessary changes in provision for carers should be funded. Its major proposal for a social insurance approach with immediate universal provision for home care while retaining some type of means testing for part of institutional care has, in the view of the Joint Committee, considerable merit.

6.3.2It should be noted that, as part of our recommendations, universality frees significant resources which could be devoted to comprehensive needs assessment. Similarly, the shift towards community care will, according to the O’Shea Report (p.117) free considerable Government resources which can be diverted from institutional care to home care. The improvement of consumer choice is, as already pointed out, more a matter of attitude than of vastly increased expenditure. Finally, according to the Mercer Report and OECD in a 1998 report, the cost of long term care is quite manageable at less than 2% of GDP in most countries. A wealthy country like Ireland has little excuse for failing to provide adequate support for carers and for those being cared for.

6.4 The Future

6.4.1The Joint Committee regards this Report as the start of a process in developing more adequate and comprehensive services for carers. We have made valuable contacts with all those making submissions and will ask them at periodic intervals to give us their updated view on the evolving service provision for carers. We hope that the Joint Committee will become a real voice for carers in Ireland and a force to promote those improvements in service provision which experience shows are needed and which all the Parties represented on the Joint Committee support.

_______________________

Mr. William Penrose, T.D.,

Chairman of the Joint Committee on Social and Family Affairs

25^th November, 2003