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Abstract

This paper explores contemporary Irish social policy for family caregivers with specific focus on the dynamic between the individual, the family and the state in terms of the social contract for care provision for people with intellectual disability. Drawing from Bacchi’s analytical framework (Bacchi, 2009), the Irish National Carers’ Strategy is interrogated specifically with regards to how it frames and assumes the social contract for family care provision for adults with an intellectual disability. We suggest that Irish social policy constructs family caregiving as the assumed natural and neutral point of departure for providing care within society, and this constructed identify is subsequently reinforced through the provisions contained with the policies themselves that seek to support such caregivers. A fundamental reconsideration of the social contract for such care provision and support with society would appear warranted.

Keywords

social contract intellectual disability irish social policy family carers

Introduction

Most adults with an intellectual disability in Ireland live at home with their families. The experiences of families caring for adults with intellectual disabilities mirror the joys, benefits and challenges experienced by carers in other contexts. However, a number of features distinguishes these carers including the longevity of the caring relationship (Mahon et al., 2019; Taggart et al., 2012), the impact of ageing on both the carer and the care recipient and concerns about the future of the care recipient when the carer dies or is no longer in a position to continue caring (Marsack-Topolewski and Graves, 2020; Baumbusch et al., 2017; Brennan et al., 2018; Innes et al., 2012). The prospect of a generational transfer of caregiving responsibility from parent to sibling is likewise a differentiating feature of this caregiving context (Marsack-Topolewski and Graves, 2020; Leane, 2020; Brennan et al., 2018). Family carers of adults with intellectual disability in Ireland may experience particular challenges due to the features of Ireland’s system of disability services provision which is set within the context of Ireland’s unique health service system.

The population of adults with an intellectual disability in Ireland is increasing and it is predicted that the number of young adults with an intellectual disability will grow by one third by 2032 and the number of those aged over 55 years of age will grow by a quarter by that date (Department of Health, 2021). It is further projected that the number of adults with intellectual disability who are living with family members will be 20% higher by 2032 than it was in 2017 (Department of Health, 2021). Yet the pool of potential carers in Ireland is subject to the same pressures as many other developed countries including the increased participation of women in the paid workforce, an increase in the age of retirement, shrinking family sizes, greater geographical distances between family members and an ageing population (Broese van Groenou et al., 2013). However, Murphy and Turner (2017) suggest that a number of demographic factors render Ireland particularly challenged in the provision of sustainable long-term care including the rate of population ageing and a predominantly rural population. Failure to address the particular circumstances of family care to people with intellectual disability not only has significant implications for the person with intellectual disability but also for the health and social care services, and for parents and siblings of people with intellectual disability.

The Irish National Carers’ Strategy (NCS) was published in 2012 (Department of Health, 2012) as the cornerstone of the Irish social policy response to care and is underpinned by a stated vision to recognise, support and empower carers. The Strategy was positioned as providing the strategic direction for policies, services and supports provided by government departments and agencies for carers in Ireland. As part of its Programme for Government: Our Shared Future (Department of the Taoiseach, 2020), the newly elected Irish government committed to review and update the Strategy therefore it is timely to consider how the current strategy frames and assumes the social contract for family care provision for adults with an intellectual disability. The following analysis draws from Bacchi’s (2009) What’s the Problem Represented to Be (WPR) and aims to interrogate the 2012 Strategy and identify the way in which the problem of carers is addressed, the type of subject that is produced by that representation and the relevance and impact of this to a specific cohort of carers – family carers of adults with an intellectual disability.

Method

The National Carers’ Strategy is the key mechanism through which the Irish government addresses the issue of informal care in Ireland and Bacchi’s (2009) What’s the Problem Represented to Be? (WPR) provides a useful framework within which to explore its relevance to family carers of adults with intellectual disability. Bacchi (2009) suggests that different groups of people are impacted differently by problem representations and a WPR analysis is concerned with the material and concrete effects on people’s lives of the problem representation (Archibald, 2020). The task in a WPR analysis, writes Bacchi (2012: p21) “is to read policies with an eye to discerning how the “problem” is represented within them and to subject this problem representation to critical scrutiny”.

WPR is used to examine the way policy formulates the problem it seeks to address and the assumptions and accepted norms that underpin the policy. Bacchi rejects the notion that the formulations of problems which social policy seeks to address are wholly objective, arguing that the representations of a problem is contingent on the knowledge and understandings that underlie the representation. Thus every postulated ‘solution’ to a problem intrinsically incorporates a particular representation of that problem and that this representation and its implications should be interrogated because the problem representation that determines what gets done and what is ignored or downplayed (Bacchi, 2009). WPR is a flexible framework through which to critically question what will be done given the representation of the problem, to whom; and who will benefit or harmed and what will stay the same. WPR is framed around six questions and as the questions are interrelated, Bacchi (2009) advises that the questions can be integrated in practice to avoid repetition:

1. What’s the ‘problem’ represented to be in a specific policy?

2. What presuppositions or assumptions underpin this representation of the ‘problem’?

3. How has this representation of the ‘problem’ come about?

4. What is left unproblematic in this problem representation? Where are the silences? Can the ‘problem’ be thought about differently?

5. What effects (discursive effects, subjectification effects, lived effects) are produced by this representation of the ‘problem’?

6. How/where has this representation of the ‘problem’ been produced, disseminated and defended?

Bacchi’s (2009) assertion that WPR can be adapted to individual studies is evidenced by the diversity of published studies that have used the framework in a range of ways. Whereas some studies have used the framework in a very structured manner (eg Tawell & McCluskey, 2022; Manthorpe & Iliffe, 2020), others have used it more as a reference point and it has also been used it in combination with other analytical tools (Van Aswegen, 2020). To achieve the aim of this study, the focus will be on questions 2, 3, 4 and 5 of the framework; in particular, the analysis draws attention to the silences and effects of the representation of the problem of carers within the Strategy. This utilisation of the framework supports an exploration of the extent to which the problematising of carers in the Irish National Carers’ Strategy resonates with and supports the lives of family carers of people with intellectual disability as reported in the extant literature. The structure of this paper follows that of the National Carer’s Strategy’s four goals and associated objectives and concludes with a discussion of the issues raised.

All authors of this study have a strong background in research and advocacy. Damien Brennan, Maureen D’Eath, Mary-Ann O’ Donovan, Philip McCallion and Mary McCarron are affiliated with the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing Study based in the Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin. Nikki Dunne is the Research Officer with Family Carers Ireland, a non-profit organisation supporting Ireland’s 500,000+ family carers. The background of the authors positions them as committed to the advancement of the wellbeing of family carers.

Findings

The National Carers’ Strategy

The National Carers’ Strategy is presented as the State’s acknowledgement of the contribution made by carers to the well-being of others. It states that carers are vital to the achievement of a “key” Government policy objective “to support older people, children and adults with an illness or disability to live in dignity and independence in their own homes and communities for as long as possible”. (NCS, 2012: p.4). Carers are defined within the strategy as “someone who is providing an ongoing significant level of care to a person who is in need of that care in the home due to illness or disability or frailty” (NCS, 2012: p. 8). The Strategy is described as a response to the “challenges and demands” experienced by some carers including emotional or psychological difficulties, physical ill health and adjustments to family and/or work life. It notes that carers may have to forgo opportunities that others take for granted and that lack of recognition may result in some carers feeling disconnected from society while drawing a distinction between carers who engage in “helping” others and those “heavily involved in caring” (NCS, 2012: p.8) and asserting that the Strategy’s focus was on the latter group. The underpinning assumption of the problematisation of caregiving within the National Carers’ Strategy is that care is rightly provided by family and friends. As such, this policy situates the social contract for care giving within the family, rather than the nation state, and this is constructed as a neutral point of departure for caregiving policy formation and service delivery. While acknowledging the important, often unrecognised, contribution which carers make to the economy of the country, the Strategy nevertheless positions informal care as normative.

Every day in this country, tens of thousands of family members, friends, partners, parents, children or neighbours, provide care for someone, who through a variety of circumstances, needs it. (NCS, 2012: p.4).

This assumption is consistent with Ireland as a Liberal welfare state with historic allegiance to the principles of subsidiarity which demands that care should be given by those closest to the individual who needed that care (Timonen and Doyle, 2008). Support for carers is not conceptualised as rights-based but is restricted to those deemed to give a significant level of care and who met the rigid entitlement criteria.

Indeed, the National Carers’ Strategy makes explicit that the State predicates support for carers on the maintenance of the caring relationship in order to prevent or postpone the need for the more costly alternatives. Such goals of carer support have been declaimed by Nolan (2001) as exploitative and morally, ethically and pragmatically indefensible. It has been argued that the unrecognised needs of ‘carers’ are only such because the people they care for are marginalised and that the needs of carers are a symptom of service users’ unmet needs (Calderbank, 2000; Molyneaux et al., 2011; Barnes, 2011). Tomkins and Eatough (2013) argue that an increased focus on the care relationship itself, will reduce the unhelpful distinction between carers and care recipients and other theorists such as Williams (2001) suggest that a universalist concept of care recognises the interdependence and mutuality that are fundamental to a care relationship. The interdependence and mutuality of the lived reality of the relationships between carers and care recipients is an important silence within Irish social policy despite that mutuality and reciprocity of care may be a particularly important feature of the lives of parents of older people with intellectual disability as they age (Gant and Bates, 2019; Ryan et al., 2014; McKenzie and McConkey, 2016; Knox and Bigby 2007).

Goal 1 of the National Carers’ Strategy

Goal 1 of the National Carers’ Strategy is to “Recognise the value and contribution of carers and promote their inclusion in decisions relating to the person that they are caring for” (NCS, 2012: p. 10) and Objective 2 of this goal is to “include carers in care planning and decision-making for those that they care for” (NCS, 2012: p. 12). This objective is inconsistent with, and silent on, the direction of disability policy over recent decades which is promulgated on maximising choice and autonomy for those previously deemed in need of care and protection. Disability activists reject the concept of care as infantailising and disempowering and the notion of care is increasingly replaced by those of support and assistance (Hughes et al., 2005). In keeping with international trends, the National Disability Inclusion Strategy 2017-2021 (Department of Justice and Equality, 2017) commits to “strengthen the focus on culture change from the ‘care’ to the ‘support’ model” (p33). Indeed, a review by Care Alliance Ireland (2017) of the language used in the National Disability Strategy Implementation Plan (National Disability Strategy Implementation Group, 2013) indicates an airbrushing of family carers from Irish disability policy. The review found that the word “supporter” was used 74 times in the policy, the word “staff” was used five times whereas there was zero use of the words “family”, “carer”, “advocate” or “caregiver”. Care Alliance (2017) notes the incongruity of excluding family carers from disability policy conversations when almost 70% of people with intellectual disability live at home with family members. When the caring relationship is minimised and compartmentalised into the role of supporter, the essence of the relationship is diminished. While the impetus to enhance autonomy through a reorientation towards ‘support’, rather than care, may be welcome, it is inconsistent with the continued normative assumption of the family as the principal structure of intervention, which is reinforced and reflects status quo of real life within Ireland.

The National Carers’ Strategy pre-dates the Assisted Decision-Making (Capacity) Act 2015 which places a legal requirement to comprehensively enable a person to make a decision through the provision of a range of supports and information appropriate to their condition. Although it lacked a legal basis, family members historically made decisions with and/or on behalf of their family member with intellectual disability and such decisions ranged from day-to-day choices to major life decisions on issues involving health, finances and living arrangements (Curryer et al., 2020). Under the Assisted Decision-Making (Capacity) Act family members may take on the role of decision-making assistant or be appointed to the more formal position of decision-making representative, therefore the objective of the Carers’ Strategy for the inclusion of carers in decision-making must meet the requirements of this legislation. Currently, the situation is further complicated by the fact that although the Act has been signed into Law, the mechanism through which a carer or cared-for person can register a formal decision-making role has not yet being established resulting in a legal limbo for carers and people with an intellectual disability.

The problematising of care in Irish social policy is also silent as to the other tensions which exist between a family-focused approach and a rights-based approach (Bigby and Ozanne, 2004). Recent policy developments in Ireland such as personalised budgets and the New Directions model of Day Services are positively focussed towards a more individualised and person-centred service for people with intellectual disability. However for reasons including the complexity of systems, lack of support for carers to navigate the new space and lack of capacity-building in the community, such initiatives also have the potential to impact negatively on carers (Brown, Harry and Mahoney, 2018; Lydon et al., 2017; Hatton and Waters, 2013). Family members in Ireland have expressed concern that the drive to promote autonomy may restrict the level of support which they have here-to-for given their family member with an intellectual disability (McCarron et al., 2019). Thus, a rights-based framework supporting choice and self-determination may sit uneasily with family-focussed approaches which acknowledges the important role that families often play in the lives of adults with an intellectual disability.

Objective 1.1 of the National Carers’ Strategy

Objective 1.1 also refers to the critical importance of identifying carers as early as possible with a view to maximising their longevity as informal carers

… if they are to be supported to maintain their caring role, particularly as some do not readily identify themselves as being a carer (NCS, 2012: p. 12)

Carers of adults with intellectual disability have had a lifetime of caring during which time their child has transitioned into adulthood. The care they give is embedded in a familial relationship wherein their primary identity may not be that of “carer”. Carers of adults with an intellectual disability may therefore find it difficult to identify with the carer role that is problematised by Irish social policy preferring to identify themselves according to their relationship with the care recipient. Others may reject the term as it may open them up to professional intrusion into the existing caring situation or because they do not feel that they need help from outside sources; carers may resist a label which they fear will lead to a ‘bureaucratisation’ of their personal relationships (Hughes et al., 2013). Henderson and Forbat (2002) suggest that there is a tension between the meanings of the words care, carer and care recipient as used in policy and the meaning of care constructed by people in their own lives: “The terms suggest “otherness” which places meaning outside of the interpersonal arena” (p683). Carers too may associate the term carer with paid caregiving and disassociate the affection, love and emotional labour with being a carer. Baumbusch et al., (2017) suggests that the term carer does not reflect the lived reality of people with intellectual disabilities and their families and argues that it is by focusing on the multiple and complex ways in which family members from different generations rely and intersect with one another in mutual interdependence that we can come to understand how dynamic family relations are embedded within the broader contexts of policy and service provision (p346). Thus, the National Carers’ Strategy is silent to the centrality of love labouring to the personal identities of carers and the extent to which love labouring “leaves such carers vulnerable to the lack of respect and material supports” (Lynch and Baker et al., 2009: p. 11). Providing care for adults with intellectual disability may have become invisible, a normality which is not interrogated by either the family themselves or health professionals or service providers.

Objective 1.3 of the National Carers’ Strategy

Objective 1.3 of the National Carers’ Strategy pledges to recognise the needs of carers by the provision of income supports. The Irish Carers’ Allowance is a means-tested social assistance payment and is the main direct income support for qualifying Irish carers. When it was introduced in 1990 the allowance represented a significant development from the State’s historic position wherein it assumed the family as the normative location for care provision but did not recognise that it had a financial responsibility for family care. The provision of this payment in some ways indicated formalisation of the underlining assumption of the family unit as the constructed neutral and natural social structure for care provision. However, Family Carers Ireland, a national support and advocacy organisation, report that 80% of Irish carers are not in receipt of the allowance due to eligibility restrictions (Family Carers Ireland, 2020). The Carer’s Allowance is means-tested against both the carer and the carer’s partner’s income subject to a level of disregard. The current weekly payment is €224 whereas the Central Statistics Office reports the average weekly income in the third quarter of 2019, for an average 32 hour working week, as €768.14. Irish households that include an adult, or adults, with a disability are amongst those with the highest poverty levels (Watson and Nolan, 2011; Russell et al, 2010; Emerson, 2007). Families of people with intellectual disability may be financially impacted by the restrictions on the carer’s ability to work and/or by costs associated with disability (Heller et al., 2015). Emerson (2007) reports that the health and social inequalities experienced by people with intellectual disability and their families is associated, at least in part, with their increased risk of living in poverty. The lived experience of carers may be lives of financial struggle and the subjectification of carers as welfare recipients. Carer’s Allowance and other social welfare entitlements are not rights-based and as such the payments may have a stigmatising or demeaning effect of the recipients of the payment and the lack of a legal underpinning of any support leaves carers vulnerable in times of economic retrenchment (Dukelow and Considine, 2017; Care Alliance, 2016; Singleton and Fry, 2015). Furthermore, the low level at which these cash transfers are made to cares tend not to attract men to caregiving thus reinforcing the gender imbalance in family caregiving (Daly, 2002).

Carers in receipt of Carer’s Allowance may also be penalised with respect to the allocation of other resources (Oireachtas Library & Research Services, 2019). Family carers in Ireland have experienced the rationing of formal home care support hours when a family member receives the Carer’s Allowance (Family Carers Ireland, 2019). This, the Oireachtas Library & Research Services Report (2019) asserts, is inconsistent with the understanding that the allowance is an income support rather than a payment for services and suggests a perception in certain sections of the health services that the needs of carers are marginal.

Goal 2 of the National Carers’ Strategy

Goal 2 of the National Carers’ Strategy is to “support carers to manage their physical, mental and emotional health and wellbeing” (p.11). Carers, particularly as they age, may have support needs notwithstanding that their experience of caregiving is a positive one (Gant and Bates, 2019). The Strategy proposes that “Carers should be reminded and encouraged to look after themselves and to seek advice, services and support when needed” (NCS, 2012: p. 14) without indicating who should be responsible for such reminding and encouragement. Despite the “potential [of Carers Needs Assessments] to dramatically alter how carers are supported in Ireland” (Oireachtas Library & Research Services, 2019: p. 41), most carers in Ireland are not entitled to an assessment of their own needs, as distinct from those to whom they give care (Courtin et al., 2014). A Carers Needs Assessment tool is being piloted in one health services area to identify the needs of carers however no commitment has been made, to date, to roll an assessment out on a national basis.

Caregiving is inherently unpredictable however resources are usually standardised and therefore may be mismatched to the particular, self-identified needs of individual carers (Milliken et al., 2019). In particular, interventions designed and evaluated to support informal carers of older adults rarely include older adults with intellectual disabilities (Heller et al, 2015).

The Introduction to the National Carers’ Strategy noted that it was important

…“to have regard to the range of supports and services that are already available for carers so that proposals emerging from this Strategy build on, rather than duplicate, existing arrangements. Some support services are specifically targeted at carers but carers can also benefit from the supports aimed at those for whom they are caring” (NCS, 2012: p. 4)

This provision in the Strategy gives rise to an important silence about the extent and focus of existing supports. Ireland has a high prevalence of informal family based caregiving and a very high prevalence of intensive informal caregiving (Verbakel, 2018). Successive Irish Government policies have emphasised a shift to community based services but have been accused of failing to adequately fund community based services (Timonen and Doyle 2008). Reporting on data from the Central Statistics Office’s Survey on Income and Living Conditions, Grotti et al., (2019) found that the rate of unmet need for formal home care support among people with an illness or disability was 83%. Family carers of people with intellectual disability may be strongly reliant on formal supports, particularly day and respite services, to sustain their ability to care (Brennan et al., 2016). Fergusson and Brien (2005) argue that services providers must move from giving a service to being of service to people with intellectual disabilities and their families. However, in accordance with the way in which they are funded, the priority of intellectual service providers in Ireland, mainly voluntary or not-for profit organisations, has been to provide care for the person with intellectual disability rather than providing support for their carers (Barron et al., 2006). Within Twigg and Atkin’s (1994) typography the position of carers vis a vis the intellectual disability services is that of “resource”. Furthermore, the positioning of carers as co-clients, of the intellectual disability services, would contradict the Strategy’s characterisation of them as “key partners in the caring process” (p. 9). Indeed, the positioning of carers as co-clients constructs them as being both care recipient and carer.

The proposal that intellectual disability services should provide a range of supports and services to carers is silent to the issues that services can also be a major source of stress to parents (Griffith and Hastings, 2014; Unwin and Deb, 2011) and a generator of increased workload. Carers can feel judged and disempowered by professionals but may be reluctant to speak out in case their criticism impacts negatively on the services received. Irish studies have reported families struggling with unmet needs and unresponsive service (Chadwick et al., 2013; Power, 2009; Kenny and McGilloway, 2007; McConkey, 2005) and families may lack trust in service providers and believe that they are made to feel ungrateful and unappreciative of the service which they are given. Power (2009) reported a perceived mismatch between the service that is given to Irish people with intellectual disability and their families and the actual requirements of the family and a belief on the part of families that “the system works for the system”. These findings indicate that the objectives of the National Carers’ Strategy with regard to service-provided support for carers of adults with intellectual disability may be difficult to achieve. Furthermore, the focus of seeking to balance caregiving within the family, caregiving by formal service providers, and support of family care givers by formal service providers, appears to be inconsistent with the drive towards ‘autonomy’ and ‘support’ articulated within the National Disability Inclusion Strategy 2017-2021 (Department of Justice and Equality, 2017)

Goal 3 of the National Carers’ Strategy

Whereas the focus of Goal 2 is to support the health and wellbeing of carers, Goal 3 focuses on their ability to provide care with confidence: “Support carers to care with confidence through the provision of adequate information, training, services and supports”. (p. 11). The Strategy further states that

Learning new skills or improving existing knowledge can make life as a carer much easier. Knowledge and training empower carers and benefits for carers include increased confidence, improved health and well-being and fewer injuries relating to their caring roles” (NCS, 2012: p.16)

This goal may have limited relevance to family carers of older people with intellectual disability who have had a lifetime of caring for their family member from child into adulthood and who themselves are ageing and possibly suffering the health implications of this ageing. Most research focus and the strongest evidence about the effectiveness of carer interventions relate to specific groups of carers such as those caring for people with dementia, cancer or stroke survivors (Aksoydan et al., 2019; Larkin et al., 2019). Older carers, in general, are generally neglected in research despite that they may provide an intensive level of care (Greenwood et al., 2019). Although family carers of older people with intellectual disability may increasingly require support interventions (Heller et al., 2007) few such interventions exist (Heller et al., 2015). Heller et al. (2015) note that the increasing intersections between ageing and disability are not being reflected in research or policy literature but continue to operate in silos. The needs of these older carers may often go unrecognised and therefore unaddressed particularly when the roles of the designated carer and care recipient become blurred. Older family carers are also less likely to avail of interventions and to use statutory services than younger carers as a consequence of previous negative experiences with services and resultant low expectations of interactions with services (Walker et al., 2020; Ryan et al., 2014; Bigby and Ozanne, 2004). Little evidence is available to indicate that progress is being made towards the implementation of the recommendations of the International Association for the Scientific Study of Intellectual Disabilities to improve services for ageing carers by combining expertise from different sectors (Ryan et al., 2014).

While the concept of caring with confidence appears positive in terms of endeavouring to ensure a level of quality and competency in care ability, this approach does embed assumptions around care as a model of intervention and responsibility for such care resting within families. As such, the focus of Goal 3 of National Carers’ Strategy is not responsibility for care, or the reorientation towards support, but on enabling the family to ‘do it well’ as the assumed point of reference for intervention.

Goal 4 of the National Carers’ Strategy

Goal 4 of the National Carers’ Strategy is to “empower carers to participate as fully as possible in economic and social life” in recognition of the reality that many “be unable to do the day to day things that most people take for granted – to relax, to socialise or to work” (p. 18). The Strategy identifies respite as a key facilitator of carers’ participation in economic and social life and Objective 4.1 states that carers:

Need access to a range of flexible (in relation to timing and type) and responsive respite care services, including in-home, residential and emergency respite. The quality of the respite services should also be of a standard that does not deter the carer from using them – carers need to be confident that the person that they are caring for is well cared for in their absence. (NCS, 2012: p. 18)

Eurocarers (nd) report that respite is “often perceived as the most important and common form of support to alleviate caregiving burden and stress” (npn). However, the provision of respite services in Ireland is limited and patchy (Hourigan et al, 2017; McConkey et al., 2013; McConkey, 2005). In 2017, only one in three family carers of adults with intellectual disability received any, let alone an adequate level, of respite (Department of Health, 2021). Despite its importance as a support to families of people with intellectual disability, no national policy on respite services exists and provision is dependent on the policy and resources of local service providers (Gadd, 2019). McConkey et al (2013) documented a parallel trend of increasing need for respite services alongside an apparently diminishing provision of such services. Family carers have suggested that respite is less available to those with more complex or challenging needs; services were said to be content to fill their respite places with individuals who placed fewest demands of the service providers’ staffing and resources (Griffith and Hastings, 2014).

The second objective of Goal 4 of the National Carers’ Strategy is to “Enable carers to remain in touch with the labour market to the greatest extent possible” (NCS, 2012: p. 18). Carers will have different preferences, capabilities and aspirations about combining paid employment and caregiving. Paid employment is largely structured around men’s traditional work patterns and do not accommodate women workers with care responsibilities (Orloff, 2002). Ireland’s traditional strong male breadwinner model has given way in recent decades to a dual-breadwinner model or adult-worker model, however mothers of older adults with intellectual disability may have withdrawn from the paid workforce well before retirement age. Female participation in the workforce in Ireland was traditionally low before it was “revolutionised” in the 1980s (O’ Sullivan, 2012). In 1993, just 39 percent of Irish women were in paid employment; this percentage was 59.5 in 2016, slightly short of the EU average of 61.4 percent. Since the 1990s in Ireland the State has encouraged women to enter the paid workforce and this gained increased impetus in the era of Irish economic boom commonly referred to as the Celtic Tiger. In order to support mothers of young children to work, creches and other childcare facilities were financially incentivised, however no such structural supports are available to carers who wish to join or remain in the labour force. Yet the availability, accessibility and affordability of an appropriate and supportive care infrastructure are central to the feasibility of carers joining or staying in the labour market. A Eurofound (2015) report on reconciling care and employment highlighted this discrepancy:

In sharp contrast to the progress made in raising awareness of the rights of workers with care responsibilities for children, public awareness and policies relative to workers with care responsibilities for adults and elderly relatives have been extremely limited. A double approach is needed to improve the situation of working carers: more publicly funded support infrastructures and improving the rights of workers with care responsibilities, including receiving compensation for the foregone earnings (Eurofound, 2015: p. 85).

The National Carers’ Strategy envisions carers being supported in the labour market by flexible and responsive respite services, and through part-time and flexi-time working, job-sharing and tele-working. The EU Directive on Work Life Balance for Parents and Carers is due to be transposed into Irish law by August 2022. This will give working carers, inter alia, the right to request flexible working and provides for at least 5 days carers leave each year. However, caring is inherently unpredictable and employers are not legally obliged to offer the flexible work structures which many carers require. Part-time work and job-sharing are likewise at the discretion of employers and may not generate sufficient income to ensure a standard of living for the carer or their family and, as previously highlighted, respite services in Ireland are not generally characterised by carers as flexible and responsive.

There is a low level of take-up of the Carer’s Leave in general and it is suggested that this may be due to a lack of awareness about the scheme, a poor fit between what the scheme offers and what carers need, potential negative career consequences of availing of the leave and the economic, social and psychological consequences of withdrawing from the paid employment (Oireachtas Library & Research Services, 2019). The provisions of Carer’s Leave reinforces the hard division between work and care as it demands a withdrawal from the labour market whereas a more flexible entitlement could work to support individuals to combine care and paid employment (Smith, 2012).

The National Carers’ Strategy further states that to achieve the goal of “enabling carers to remain in touch with the labour market to the greatest extent possible” (p. 18), “the care recipient’s access to home care services and to day care in the community will be … important in this regard” (p. 18). However, as noted previously, contrary to the needs of family carers, community and day care services have been subject to retrenchment in recent years and research has indicated that families do not, in general, find services flexible to the needs of families.

The impact of caregiving on the potential of carers to participate within the labour market, and to avail of the economic opportunities of such participation, is recognised within Goal 4 of the National Carers’ Strategy. This is a tacit recognition of a shared responsibility for care provision between nation state and family carers, however this is one that operates very much within the paradigm of ‘care’ and ‘need’, rather than ‘support’ and ‘rights. Furthermore, the impetus and motivation for such state support is unclear, it could be argued that such policy interventions satisfy the need to ensure a supply of workers to support an economy model. Indeed, the focus of Goal 4 is to maximise participation of carers within the labour market, rather than re-orientating the labour market itself to ensure it is accessible to those constructed as in need of care or to enable flexibility for all workers to comfortably engage with the demands of life outside of the workplace, including care giving.

Discussion

The National Carers’ Strategy is the cornerstone of the Irish social policy response to care and is underpinned by a stated vision to recognise, support and empower carers. Published in 2012 during a period of economic retrenchment and national austerity, the commitments made were not funded and were intended to be cost-neutral (Oireachtas Library & Research Services 2019). Yet the approximately 500,000 family carers in Ireland provide 19 million hours of unpaid care each week saving the state 20 billion euro per year (https://www.familycarers.ie/family-caring-in-ireland/caring-by-numbers). The Strategy explicitly acknowledged that alongside the rewarding aspects of caring there are also challenges and demands. Providing care may have significant physical, psychological, social and financial negative impacts on those who provide such care, effectively limiting their participation in economic, political and social life. Covid-19 presented tremendous challenges to many family carers as services and supports were withdrawn, inadequate information was provided and many carers experienced a decline in their own health and wellbeing and that of the person they care for (Family Carers Ireland, 2020).

The application of questions from Bacchi’s WPR framework has usefully highlighted how Irish social policy constructs family caregiving as the assumed natural and neutral point of departure for providing care within society, and this constructed identity is subsequently reinforced through the provisions contained with the policies themselves that seek to support such carers. A fundamental consideration of the social contract for such care provision and support with society would appear warranted, particularly with reference to the dynamic relationship between those constructed as in need of care, their families and the nation state.

Irish social policy strongly constructs and ‘frames’ the identity of carer in a very particular way, and in turn this constructed identity is responded to and reinforced through the practical supports and provisions contained within social policies. The limited supports that are available to carers are available only to those who self-identify with the carer-as-constructed rather than those whose main identity is based within their relationship with the care-recipient. Eligibility for the Carer’s Allowance limits the carers’ freedom to engage in paid employment or to study to 18.5 hours per week and requires the carer to characterise the care given as burdensome. Guest and Corrigan (2018) propose that the co-existence of everyday-ness and complexities of caring can be understood as an experience of ‘extraordinary normalcy’ and argue that their concept acknowledges the changes and challenges that providing care can bring about whilst also recognising how these merge into everyday normalcy. O’ Connor (2007) describes that the family carers in her study had to transition from locating their activities within a framework of their familial relationship to accepting the label of carer: “it simply did not occur to participants that they were doing something outside the bounds of their relational role” (p. 168). The transition from giving care to a child with a disability to giving care to an adult child with a disability is gradual making it more complex for parents to redefine themselves as carer. Carers of people with an intellectual disability may therefore find it difficult to identify with the carer that is problematised by Irish social policy. It is a narrow definition, unlikely to embrace the hidden carers who may not relate to the concept of care that is described in policy.

Ireland compares relatively well in terms of the level of social welfare payments to carers and has a duration of carer’s leave that similar to other European countries such as Belgium and France (Russell et al., 2019). However, in other ways there exists an apparent inconsistency between the rhetoric of Irish policy makers about the importance and value of carers and the extent to which support is provided including services for care-recipients. While Ireland had a prolific and problematic history of residential/institutional care provision in sectors such psychiatric hospitals (Brennan, 2014), the policy paradigm across settings is now for care in the community. However, Ireland’s public expenditure on long-term care is low by international standard, and there is significant unmet need for long-term care and the system has been characterised as “ad hoc, under-funded and faced with significant structural problems” (Social Protection Committee and the European Commission, 2021: p. 115).

Deficits in services for care-recipients impact directly and indirectly on carers; that which the state does not provide is left to families to provide (Jenson and Saint-Martin 2003: p. 81). The Strategy positions carers as both “key care partners” (p. 12) with the formal care services and as co-clients of services however, given that the Irish disability services have been characterised as “crumbling” with mounting sectoral deficits of more than €40 million (https://www.disability-federation.ie/assets/files/pdf/final_ge2020_new_non_print_manifesto_-_web.pdf) it is unlikely that they have capacity to provide services to co-clients. A radical realignments or resources away from formal care providers and paid staff has simply not occurred, which severely limits the possibility for resourcing of carers a “key care partners”.

Employment outside the home may have a protective effect of a carer’s wellbeing. Working outside the home may ease financial pressures, enhance self-esteem and the social interaction which employment may provide essential support to sustain the carer’s capacity to care (Hoff et al. 2014). Joseph & Joseph (2019) argue that employment is an important space for caregivers and a contributor to well-being. The issue of reconciling care responsibility and paid employment is an important one which has become prominent on European and Irish policy agendas. However, national and European provisions reflect a social policy environment one in which care is conceptualised as “a temporary stage in an otherwise employment centred life course” (Pfau-Effinger 2005, p. 322) and therefore does not accommodate those for whom caregiving spans a lifetime. This is an important gender issue as more than three-quarters of all unpaid care work across the world is done by women (International Labour Organization, 2018). Evidence suggests that men provide less care and that they care differently. Lynch, Lyon & Cantillon (2009) characterise men’s role in informal caregiving as care commanders whereas women hold the rank of foot-soldiers. Care commanders are positioned to more easily accommodate paid employment alongside their caring role whereas the daily care regime for the foot soldiers may be more relentless and less flexible. Russell et al (2019) identified that the gender gap in unpaid work time is the seventh highest in the EU leading to the conclusion that “the Irish policy regime continues to support a gendered allocation of unpaid care” (p.xxi).

Ireland’s response to people with intellectual disability has historically been at a distance. Previously consigned to workhouses and asylums alongside the poor, the infirm and the mentally ill, (Brennan 2014; Doody et al., 2012), the needs of children and adults with intellectual disability began to be met in special residential centres mainly set up by religious orders in the mid-19 century (HSE, 2011). The drive for community based services was spearheaded by friends and families of people with intellectual disability and community inclusion has been the dominant paradigm in Ireland since the 1950s. Policies including Needs and Abilities: a policy for the intellectually disabled (Department of Health, 1990) and Time To Move On From Congregated Settings – A Strategy for Community Inclusion (HSE, 2011) committed to ending residential provision for people with intellectual disability in institutional or congregated settings however in 2018, 2136 adults with intellectual disability remained living in a congregated setting (https://inclusionireland.ie/congregated-settings/). Deinstitutionalisation is a hugely positive development towards vindicating the human rights of people with intellectual disability and is associated with improved quality of life for people who have made the transition from institutional settings (McCarron et al., 2019). However, the move to community-living, which was initially conceived as movement to independence and supportive housing, has effectively resulted in the assignment of responsibility for the care of adults with an intellectual disability as a family one. As of 2017, over 55% (n = 10,865) of adults with intellectual disability on the HRB database aged over 18 years of age were living in a home setting mainly with a parent or parents. The welcome increase in the lifespan of people with intellectual disability has not resulted in adequate planning and resourcing to support a timely transition from family care to community-based living supporting the person with intellectual disability to individuate as they enter adulthood. The preference of some adults with intellectual disability and some family carers of adults with disability is to continue to live together with the family member providing care; other family carers are unable or unwilling to do so. However in a policy context where the state explicitly frames extended family caregiving as normative, relinquishing care can seem transgressive (https://www.irishtimes.com/life-and-style/health-family/minding-my-disabled-daughter-i-don-t-want-to-do-this-any-more-1.2872341). Not to be able or want to continue to be a primary carer is not to reject the care recipient but rather it is an acknowledgement that one’s capacity has been reached.

This principle resonates with Henwood et al.’s (2017) assertion that support for carers is increasingly understood to include supporting them to live a fulfilled life outside their care responsibilities. Lynch (2013) argues that carers are both disempowered and impoverished in cultures where care is not recognised or rewarded and that family carers, in particular, often have little power to control the conditions under which they provide care. Choice is an important principle underpinning recent disability policy however little scope exists for Irish carers to exercise choice about whether or not to care and about the extent to which they are able to provide care. Choice and independence do not have the same legitimacy in Irish social policy for carers as it does for care recipients. The exercise of choice, Arksey and Glendinning (2007) point out, presupposes at least two alternatives from which to choose. Irish carers of people with intellectual disability have limited opportunities to choose between alternatives either in respect of supports to themselves as carers or in respect of the services received by the care recipient.

Family carers are a diverse constituency and many of the issues that have been raised in this analysis of the National Carers’ Strategy will also be relevant to informal carers of people other than adults with an intellectual disability. However, family carers of adults with intellectual disability are rarely visible in carer policy (Lunsky et al., 2014) and Forrester-Jones (2019) warns that these carers “may be a growing ‘hidden’ population that is at risk of being forgotten about both in the literature, in policy, and in terms of receiving support” (p. 14). Drawing on Bacchi’s (2009) What’s the Problem Represented to Be? this article suggests that Irish social policy constructs family caregiving as the assumed natural and neutral point of departure for providing care within society, and this constructed identify subsequently reinforced through the provision contained with the policies themselves that seek to support such carers. A fundamental consideration of the social contract for such care provision and support with society would appear warranted, particularly with reference to the dynamic relationship between those constructed as in need of care, their families and the nation state.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research for this paper was supported by the Irish Research Council, New Foundations Scheme 2020 (RPAMS No. 18450).

ORCID iDs

Maureen D’eath

Nikki Dunne

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Irish social policy to family carers of adults with an intellectual disability: A critical analysis

Abstract

Keywords

Introduction

Method

Findings

The National Carers’ Strategy

Goal 1 of the National Carers’ Strategy

Objective 1.1 of the National Carers’ Strategy

Objective 1.3 of the National Carers’ Strategy

Goal 2 of the National Carers’ Strategy

Goal 3 of the National Carers’ Strategy

Goal 4 of the National Carers’ Strategy

Discussion

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iDs

References