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The European voice for informal carers

IRELAND

Towards carer-friendly societies
Demographic background

While Ireland currently has one of the youngest populations and lowest rate of people over 65 in the EU, the ageing population will have significant social and economic implications in addition to the increased demand for long-term care.

In the period 2013-2060 the share of people aged 80+ in the Irish population is expected to more than triple (from 2.9% to 10.2% compared to 5.1%-11.8% for the EU-28) through a gradual increase over time. At the same time, the share of people 85+ will expand by more than a factor 4 from 1.3% to 5.8% (EU-28: 2.3%-7.0%).

Over the same period, the old-age dependency ratio measured as the proportion of 65+ compared to the 20-64-year olds will rise from 29.2% (EU-28: 29.9%) to 55.1% (EU-28: 55.3%). Life expectancy for men and women at age 65 is projected to rise from 16.8/20.0 years (EU-27: 17.2/20.7) in 2010 to 22.2/25.5 years (EU-27: 22.4/25.6) in 2060 respectively.

Under an assumption of no policy change the Ageing Report scenario suggests that public expenditure as a share of GDP would rise from 1.3% to 3.4% (EU-27: 1.6%-3.1%) by 2070. The impact of a progressive shift from the informal to the formal sector of care in Ireland would entail an estimated increase by 189% in the share of GDP devoted to public expenditure on long-term care (128% on average for the EU27).

Current Long-term care provision

Long-term care provision in Ireland is mainly organised in terms of health service-related provisions and income support. Income support (in the form of Carers Allowance, Carers Benefit etc.) are administered by the Department of Employment Affairs and Social Protection and are separate from the delivery of health services. While the Irish care system is often seen as a relatively integrated one, compared to other countries, it still suffers from budget silos and poor communication across disciplines. All public health and social care services come under the remit of the Health Services Executive (HSE) either through the direct provision of services or through the funding of social care. Access to health and social care services, apart from long-term residential care, is the same for those aged over or under 65 years. The official Irish policy approach towards long-term care is ‘that older people are recognised, supported and enabled to live independent full lives’ (Government of Ireland 2011). In 2012, a National Carers Strategy was published (Department of Health 2012a). The following year, the new National Positive Ageing Strategy was published and 2014 saw the first National Dementia Strategy (Department of Health 2013a, Department of Health 2014). Each of these is framed in the context of the strategy around Future Health and Healthy Ireland – A Framework for Improved Health and Wellbeing 2013-2025 (Department of Health 2013b).

The system is divided between financial and other supports for informal carers on the one hand and health-related home and community services on the other hand. When it comes to the provision of formal care to older persons, the only statutory scheme currently in place is for residential long-term care which is accessed and funded through the Nursing Home Support Scheme administered by the HSE (commonly referred to as ‘Fair Deal’). Every older citizen can apply to the scheme through their local health office. In order to get accepted, a ‘Care Needs Assessment’ is undertaken to assess if the person actually needs long-term, nursing home care. If they are assessed as in need of such care, then a financial assessment determines their contribution to the cost of care and the corresponding level of state financial assistance. Under this scheme, people make a contribution of 80% of their weekly cash income; 7.5% on the value of their savings and investments per year and 7.5% on the value of their primary residence and any other properties that they own per year up to a maximum value of 22.5% (i.e. the contribution from property is capped at 3 years). The first EUR 36,000 of assets, or EUR 72,000 for a couple, is not counted in the financial assessment. For example, in the case of a person whose weekly contribution to nursing home care is calculated to be €650, the State will pay the balance of €350 where nursing home costs are €1000 per week.

People can choose public, private or voluntary nursing homes (that is, those run by charities and religious orders) under the Nursing Home Support Scheme. In terms of the distribution across sectors, about three-quarters are provided in the for-profit sector, with about a fifth of public provision and the remainder by voluntary providers (HIQA 2016). All the indications are that private commercial providers are increasing their share of the sector in Ireland in a context where nursing home occupancy rates are high at 94% and demand largely exceeds supply (Cushman & Wakefield 2017). The is predominantly caused by older people having a ‘right’ to nursing home care under the statutory provisions of ‘Fair Deal’ with no equal right to home care which is provided on a discretionary basis. The Irish Government has committed to addressing this anomaly through the introduction of a Statutory Home Care Scheme by 2021. Most nursing home places are majority-funded by the state, regardless of the sector.

 

Home care

In addition to long-term care in residential care facilities, the government provides Home Support Services which include Home Care Packages and Intensive Home Care Package. In line with the stated government policy of caring for people at home and in the community, public investment in home care has largely followed an increased trajectory in recent decades, although not between 2009-2012 where a 10% reduction in provision occurred (Care Alliance Ireland, 2018). However, due largely to increased hourly costs of provision together with a significant and unrelenting increase in the population aged >65 and most particularly >85; access to home care has not improved. It is estimated that approximately 7.5% of the 65 and over population access publicly-funded home care support. (Care Alliance Ireland, 2018)

Home-based care services come mainly under the heading of ‘Home Support Service’ (formerly called Home Help Service or Home Care Package Scheme) and consist of non-medical assistance to enable people with care needs to remain healthy and capable of living at home for as long as possible and to support informal carers (e.g. getting in and out of bed, dressing and undressing, personal care such as showering and shaving). These are given in the form of home-based services and are made available on the basis of a needs’ assessment; there is no means test involved. Such services are supplied either by publicly-employed HSE staff, community and voluntary organisations or private sector agencies (approved by the HSE). All the indications are that the latter are increasing in this sector also. Although it is a relatively new sector, the home care industry quadrupled in size in Ireland between 2000 and 2010 (Mulkeen 2016).

In a second layer, Home Care Packages for people with a higher level of need are oriented towards keeping people at home for as long as possible (this is also designed to enable those in hospital to return home). Eligibility for these services is based on assessed needs; the services are free and there is no means test. The main recipient group consists of older people living in the community or who are in-patients in acute care services and at risk of admission in long-term care services.

Unlike the Nursing Home Support Scheme, the home help service and Home Care Packages have no statutory basis which means that there is no statutory entitlement. For this and other reasons, national provision is rather patchy, often depending on geographical location and historical financial allocations. These and previously existing providers are monitored by staff in the local health office.

Carer-friendly policy environment

Number of carers

There are various figures available regarding the prevalence of informal care in Ireland. Since 2002, thanks to extensive lobbying and representation by the family carers movement, there has been a formal state-endorsed approach to quantifying the number of individuals in the Republic of Ireland who are providing unpaid care to a relative or friend. Initially, the Census of Population provided this data every five years. More recently a number of other large-scale surveys have been undertaken in an attempt to capture the prevalence of family caring in Ireland. Since 2002, four Censuses of Population have been published that included a specific question relating to family/unpaid caring. Some modifications have been made to the Census question, most recently with the inclusion in 2011 and 2016 of a question on the number of hours of care provided per week.

In the 2016 Census, 195,263 individuals indicated that they provided such care.[1] This represented 4.1% of the population, an increase in absolute numbers by 31% from the 148,754 reported in the 2002 Census.[2] The gender breakdown was reported as 61% female and 39% male, showing no change in the relative number of males providing care since the 2002 Census. The Census estimates that carers provided 6,608,515 hours of care per week, an average of 38.7 hours per carer per week.

A 2009 Quarterly National Household Survey (QNHS) found that 8% of respondents aged 15 and over provided some level of unpaid care. Furthermore, the Irish Health Survey 2015 found that “10% of the population (i.e. about 360,000 people) are providing care to someone with a chronic condition or an infirmity due to old age. In 86% of these cases, the person being cared for is a family member. The average number of hours spent providing care is 44.7 hours per week”.

All three surveys above have robust methodologies but due to wording of the questions used and varying methods of data gathering different proportions of the population are identifying as carers. The language used in the census ‘personal help … including feeding or dressing’ may contribute to the lower census prevalence figure. The wording of the 2015 health survey and the 2009 QNHS is broader than that used in the census and so, may provide a more realistic indication of the informal care pervasiveness in the country.

[1] Central Statistics Office. ‘Census 2016 Profile 9 – Health, Disability and Carers’ 2017.

https://www.cso.ie/en/csolatestnews/presspages/2017/census2016profile9-healthdisabilityandcarers/

[2] Central Statistics Office. ‘Census 2002 Volume 10 – Disability and Carers’ 2004.

https://www.cso.ie/en/census/2002censusreports/census2002volume10-disabilityandcarers/

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Carers’ mental and physical health

Unless urgent action is taken to better support carers and address years of underspending on home care, respite and carer payments, families will be unwilling to take on a caring role and the pressures on our already overburdened health and social care system will significantly increase.

A study carried out in 2019 by Family Carers Ireland in collaboration with the College of Psychiatrists of Ireland as well as the UCD School of Nursing, Midwifery & Health Systems[1] found that informal carers were less likely to report themselves as being in good health compared to the general population (64% and 83% respectively). Besides, the number of carers reporting poorer overall health and wellbeing increased by 24% between 2009 and 2019). The study also highlighted that:

  • 48% of carers said they were diagnosed with mental ill health;
  • 67% of carers reported they suffered with physical ill health;
  • 68% of carers felt that their health had suffered as a result of caring;
  • 39% of carers were diagnosed with anxiety; and
  • 35% of carers were diagnosed with depression.

[1] The Physical, Mental and Psychological impact of caring, 2019. The report sets out the headline findings of a national Family Carer Health and Wellbeing Survey undertaken between November 2018 and January 2019. The survey was completed by 1,102 current carers who are members or part of the network reach of Family Carers Ireland. The survey is a repeat wave of a similar survey undertaken in 2009, which allows to track changes in the health, wellbeing and burden of carers.

Training and recognition of carers’ skills

Relevant education and training may help carers to care for themselves and family member more effectively and safely. It is important to learn how to care more effectively and safely. The state Health Services Executive (HSE) as well as voluntary agencies supported by the HSE can provide training for carers for example;

– Family Carers Ireland (formerly Carers Association & Caring for Carers), the national voluntary organisation for carers in the home provides a range of training. These consist in one-day, non-accredited training for topic-specific workshops, based on a minimum of 12 participants, for companies and organisations. Family Carers Ireland nevertheless continues to facilitate these workshops for family carers, subject to available funding.

– Alzheimer’s Society of Ireland also provides training courses to suit the family carer. These include both online and face-to-face options, including dementia-specific training and information.

Carers Benefit

Carers Benefit is a weekly payment of €220 for people who need to give up work in order to provide care to someone in need of full-time care. It is not means tested by rather is based on a person’s PRSI (social insurance record). The Carer’s Benefit is time limited and may be claimed as a single continuous period or in any number of separate periods up to a total of 104 weeks. The conditions for eligibility for Carer’s Benefit stipulate that the claimant must be aged at least 16 and under 66 years. In addition, since it is an insurance–based benefit one must have been employed for at least eight weeks in the previous 26-week period for a minimum of 16 hours a week or 32 hours a fortnight and have made at least 39 weeks of social insurance contributions in the relevant tax year. One must also have (had) to give up work to become a full-time carer.

While historically the carer’s payment was treated as separate to the rest of the social security system, in recent years attempts have been made to improve demand and take-up. Hence many recipients can avail of activation services once their period of caring ends. Yet, most activation supports still require a period of time of the ‘live register’ – i.e. to be in receipt of jobseeker’s allowance prior to applying for activation supports etc. Another course of action has been to moderate the conditions of receipt. For example, it is possible for a carer to receive the half-rate Carers’ Allowance if they are getting certain social welfare payments while providing full time care to another person. In addition, a recipient of Carer’s Allowance who subsequently becomes entitled to another payment can claim the other payment and still receive half their rate of Carer’s Allowance (but only if the other payment is one of the stipulated qualifying payments for Carer’s Allowance). Measures have also been taken to increase flexibility. For example, two people who share the care can also share the Carer’s Allowance (and the annual Carer’s Support Grant – see below). The conditions stipulate though that care must be shared in an established and regular manner. Those in receipt of Carer’s Benefit and Carer’s Allowance can build up credits for a social insurance contribution.

Domiciliary Care Allowance (DCA)

The Domiciliary Care Allowance is a monthly payment for a child aged under 16 with a severe disability, who requires ongoing care and attention, substantially over and above the care and attention usually required by a child of the same age. It is not means tested. The definitions for terms such as severe or substantially can be found in the DCA Medical Guidelines. These are used by the Department of Employment Affairs and Social Protection (DEASP) when assessing applications for DCA. The guidelines state that the payment is not based on the type of disability but on the resulting physical or mental impairment which means that the child requires substantially more care and attention than another child of the same age.

Other benefits

Carer’s Support Grant: among the other benefits available to carers is a Carer’s Support Grant of €1,700 – an annual payment made to recipients of either Carer’s Allowance or Carer’s Benefit. The Support Grant is paid automatically each June to the recipients of the above benefits by the Department of Employment Affairs and Social Protection and can be used as the recipient wishes (and not necessarily to buy respite care, as reflected in the change of name in 2016 of the grant from Respite Care Grant). In addition, carers assessed as ineligible for Carers Allowance due to exceeding the means test can also apply for the grant.

Carers GP Visit Card: Since September 2018 all carers in receipt of Carers Allowance or Carers Benefit are entitled to a Carers GP Visit Card which allows them to visit their GP free of charge.

Recognition and definition of carers

There is no system of social care insurance in operation in Ireland – the emphasis is on enabling informal care through a suite of social welfare measures/supports centring around cash payments to carers including Carers Allowance (€219 per week) and Carers Benefit (€220 pw) and an entitlement to Carers Leave from employment of up to 104 week .‘. The National Carers Strategy 2012 defines a carer as ‘someone who is providing an ongoing significant level of care to a person who is in need of care in the home due to illness or disability or frailty.’ Family Carers Ireland, a national charity supporting carers and a Eurocarers member, estimates the contribution of carers to be in the region of €10 billion each year in avoided health and social care costs.

Identification of carers and assessment of their needs

Few countries capture nationally representative data on the proportion of carers. A question on family carer prevalence has been included in in the Irish census since 2002 (see previous section for more details). Some weaknesses in the census question relating to caring have been highlighted. Family Carers Ireland argue that use of the term ‘unpaid’ may discourage recipients of social welfare supports (i.e. Carers Allowance, Carers Benefit, Carer Support Grant or Domiciliary Care Allowance) from responding positively as some may consider these social transfers as payment for care work and therefore not ‘unpaid’. Also, the framing of the question may not be sufficiently broad and may deter carers of adults or children with an intellectual disability (e.g. autism, Asperger’s) or indeed those caring for a loved one with a mental health difficulty from responding.

Carer Needs Assessment

A Carers Needs Assessment has been developed with the HSE and in collaboration with organisations in the caring sector as a complimentary tool to the Single Assessment Tool for Older People. Plans are underway to pilot the Carer Needs Assessment in 2020. If adopted, mainstreamed and broadened to include all full-time carers the Assessment will have the potential to dramatically alter how carers are supported in Ireland.

Multisectoral care partnerships

The Assisted Decision-Making (Capacity) Act was signed into law in December 2015 but is not yet fully commenced. The Act provides a statutory framework for all individuals to be supported in making decisions about their welfare, property and financial affairs. This assistance and support are particularly required where the person lacks, or may in the future lack, the capacity to make the decision unaided. A number of new arrangements are covered by the Act, including Assisted Decision-Making and Co-Decision-Making. A process is also set out for the court to appoint a Decision-Making Representative for an individual. Advance Healthcare Directives are introduced into law for the first time. As well as introducing new decision-making procedures, the Act sets out new arrangements for Wards of Court and for people who wish to make an Enduring Power of Attorney. A Decision Support Service was established in 2017 to provide a range of functions in relation to the new arrangements set out under the Act. The Act is of particular importance to family carers, as they will be the most likely person to assume the role of an Assistant Decision Maker, a Co-decision Maker, a Decision Making Representative or a Designated Healthcare Representative in the case of Advanced Healthcare Directives. In addition, many family carers are currently making decisions on behalf of people with diminished capacity where they have no legal right to do so. This legislation, when implemented will remove this legal vacuum.

Access to respite care

Respite services are provided to individuals following an assessment of health needs of the individual user and subject to the resources available. Information about respite services is available through local primary care teams/public health nurses or local health offices.

Access to respite remains problematic and is often dependent on the nature of the person’s condition and where in the country they live, rather than on need. While respite is consistently identified as a key intervention to support the health and well-being of carers and is critical to the sustainability of caregiving efforts, funding cuts, staff shortages, bed closures and the transfer of respite beds to transitional care beds or long stay beds have combined to reduce respite availability. According to the 2019 study by Family Carers Ireland, the College of Psychiatrists of Ireland and the UCD School of Nursing, Midwifery & Health Systems3, 83% of carers’ loved ones have no access to suitable respite.

Carer’s Allowance

Carers Allowance is a means tested weekly payment paid at a maximum rate of €219 per week (€236 for carers over 66 years). To be eligible, the carer must be habitually resident in the state and must be at least 18 years old, and not be engaged in employment, self-employment, training or education courses outside the home for more than 18.5 hours a week[1].

Carer’s Allowance is by far the more widely claimed. The vast majority of claimants for carers’ payments are women, underlining a pattern for carers to be women with low or no attachment to the labour market. Both payments are received on a weekly basis provided one meets the conditions. For the purposes of the means-test for the Carers’ Allowance, the means taken into account include the carer applicant’s own income as well as that of their spouse, civil partner or cohabitant (with the exception of the home) or an asset that could yield or provide the applicant with an income (for example an occupational pension or benefits from another country). There is an income disregard or cut-off of EUR 332.50 of gross weekly income for a single person (double for a partnered/married person). Since 2017, this allowance is paid for an additional 12 weeks after the death or entry into long term residential care of the care recipient as it was recognised that when a carer’s caring role ends, the carer requires a transition period during which they can adapt to and plan for their life post-caring.

[1] The number was changed in the Budget 2020 (it was previously 15 hours) as announced in October 2019. The change comes into effect in January 2020.

Carer’s leave

A Carer’s Leave exists which is unpaid but constitutes a right or entitlement provided one meets the conditions. The Carer’s Leave Act 2001 made provision for employees to leave their employment temporarily to provide full-time care for someone in demonstrable need of full-time care and attention. The person to be cared for must not necessarily be a family member; providing care for a friend or colleague is also deemed eligible for leave purposes. To be eligible the person must have been in the continuous employment of the employer from whom the leave is taken for at least 12 months, before he or she can commence the leave. There is no hours’ threshold specified. The entitlement to the leave is for a minimum 13 weeks up to a maximum of 104 weeks. If someone asks to take less than 13 weeks of Carer’s Leave, the employer is legally entitled to refuse the request. The leave may be taken in one continuous period of up to 104 weeks or for a number of separate periods not exceeding 104 weeks in total. If the latter, there must be a break of 6 weeks between the leave periods and the employee must give at least 6 weeks’ notice of the intention to take the leave. A person may only be on Carer’s Leave in respect of any one person at any one time; however an exception is made where two people live together and both are in need of full-time care and attention. In this situation the total duration of entitlement is doubled to 208 weeks.

While the Carer’s Leave is unpaid, it is job protected for the duration of the leave. The person may be eligible for Carer’s Benefit (see below) if they have sufficient social insurance contributions and meet the other eligibility criteria. If they do not qualify for Carer’s Benefit they may qualify for Carer’s Allowance which is a means-tested payment (see below). While on the leave, one can build up social security credits. Both the cared-for person’s family doctor and the applicant’s employer are involved in the application process for the leave.

The leave cannot be taken on a part-time basis. But a person can work while on Carer’s Leave for a maximum of 18.5 hours a week provided the income from employment or self-employment is less than a weekly income limit set by the Department of Social Protection.

Carers Tax Credits and Reliefs

As well as direct payments, Ireland also has a range of tax reliefs and tax credits available to caring families. The Home Carer’s Tax Credit which is given to married couples or civil partners (who are jointly assessed for tax) where one spouse or civil partner works in the home caring for a dependent person. Note that this person can be a child, an adult over 66 years or a person with a disability who requires care. The conditions regarding the need for care here are much less stringent though as compared with specific provisions for carers’ benefits. As of Budget 2020, the annual value of the tax allowance is EUR 1,600. The Incapacitated Child Tax Credit is €3,300 and can be claimed if you are the parent or guardian of a child who is permanently incapacitated, either physically or mentally. The Dependent Relative Tax Credit is €70 and can be claimed if you maintain a relative at your expense. The Dependent Relative Tax Credits was previously linked to a person’s eligibility to claim medical expenses however as this no longer exists the credit is now of limited value. Finally, Tax Relief on Cost of Employing a Home Carer is a tax relief available to offset the costs employing a professional home carer and is paid at your highest tax rate up to a maximum deduction of €75,000 per annum.

References
  • Estimates for Numbers of Family Carers in Ireland, Family Carers Ireland, October 2019
  • UNECE Policy Brief on Ageing No. 22, September 2019
  • The Physical, Mental and Psychological impact of caring, 2019
  • Mind the care gap: Exposing the health system’s vulnerability to the gap between family care provision and anticipated demand, Diarmaid O’Sullivan, Oireachtas Library & Research Service, 2019
  • The 2018 Ageing Report, Economic and Budgetary Projections for the EU Member States (2016-2070), EC, 2018
  • ESPN Thematic Report on Challenges in Long-Term Care, Ireland, EC, 2018
  • Health Service Executive (HSE) Website
  • ESPN Thematic Report on work–life balance measures for persons of working age with dependent relatives, Ireland, 2016
  • Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability, EC, 2016
  • Adequate social protection for long-term care needs in an ageing society, European Commission, 2014
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