Maria Inês Costa (Master’s student in Human Rights at UMinho).
A 2018 report by the European Commission highlights that the European Pillar of Social Rights “makes explicit the commitment to people providing care, including their rights to flexible working and access to care services“, bearing in mind that data suggests that most long-term care in Europe – around 80% – is provided by informal carers, this is, people who care for dependent or elderly people, to whom they offer support in basic and/or instrumental activities of daily living. These caregivers are not trained in health care and presumably do not receive compensation for doing this work, neither do they possess a formal work agreement.
In fact, the European Pillar of Social Rights Action Plan, whose goals are to be achieved by 2030, addresses the fact that the resilience of long-term care is being put to the test, not only by the additional strain of the pandemic, but also by demographic trends that suggest an increasingly ageing European society, requiring rapid and effective responses in terms of health care services, their quality and distribution across the territory. Eurocarers, the European network representing informal carers and their organizations, reacted positively to the proposal of the European Pillar of Social Rights, highlighting in a written contribution that support provided to informal carers was key to the sustainability of the health and long-term care systems through participation and integration policies focusing on their well-being, employment and empowerment. In a letter sent to the Portuguese Presidency of the Council of the European Union in April 2021, the European network insisted on the importance of implementing the principles outlined in the European Pillar of Social Rights, and called for the urgent development of a global EU strategy on care, comprehensive enough to address all aspects of formal and informal care, including the current shortages in the informal care sector and the need to ensure support for informal carers to improve their situation, given their crucial role in providing care across the EU.
In the year 2017, the European Commission issued a communication entitled “An initiative to support work-life balance for working parents and carers”, which contains the information, used as a motto to introduce the text, that women are underrepresented in the labour market – “women are increasingly well qualified and more women than men graduate from universities in Europe but many disappear from the labour market due to their responsibilities as parent or as carer of family relatives.” The drafters of this communication emphasized that the initiative was drawn up to address the challenges that demographic trends persistently pose, in addition to those related to the need to achieve gender equality in the EU by supporting the work-life balance of men and women with care responsibilities and the more equal use of leave and flexible working arrangements.
While it was recognized in the initiative that the European Union addresses issues related to gender equality in the labour market and the promotion of work-life balance through legal provisions and funding and policy guidance, it was emphasized that further efforts were needed, including the enactment of a specific Directive addressing work-life balance. In fact, this aspiration was fulfilled, in 2019, with the publication of the Directive 2019/1158 on work-life balance for parents and carers and repealing Council Directive 2010/18/EU.
This Directive, in addition to establishing rights related to parental and paternity leave, also does so with regard to carer’s leave, a term which is defined as “leave from work for workers in order to provide personal care or support to a relative, or to a person who lives in the same household as the worker, and who is in need of significant care or support for a serious medical reason, as defined by each Member State” [Article 3(1)(c)]. Furthermore, Article 6(1) establishes that “Member States shall take the necessary measures to ensure that each worker has the right to carers’ leave of five working days per year (…) [and they] may determine additional details regarding the scope and conditions of carers’ leave in accordance with national law or practice”. As far as flexible working arrangements are concerned, Member States are obliged to ensure that “workers with children up to a specified age, which shall be at least eight years, and carers, have the right to request flexible working arrangements for caring purposes (…)”, as stipulated in Article 9(1).
In addition to providing protection against discrimination and from dismissal and burden of proof (on the grounds that employees have applied for, or have taken, the leave provided), coupled with penalties and a guarantee of protection in case of adverse treatment or consequences, Article 15 reiterates that “Member States shall ensure that the body or bodies designated (…) for the promotion, analysis, monitoring and support of equal treatment of all persons without discrimination on grounds of sex, are competent with regard to issues relating to discrimination falling within the scope of this Directive.” Indeed, the analysis of the realm of caregiving calls for attention to the gender dimension that it encompasses, since most informal caregivers are women, bearing in mind that one of the European Union’s primary objectives is to achieve equality between men and women in all areas (see Article 3(3) TEU and Article 23 CFREU).
In this regard, the Social Policy Research Unit states that there is consistent evidence on the relationship between caregiving and reduced labor market participation, with more intensive care provision being associated with a lower likelihood of labor activity by working-age women. As Kvist (2015) highlights, “gender issues, in particular questions of gender equality, have long been within EU’s legitimate sphere of social policy (…)”. The regulation of the scope of care matters to the European Union for a number of reasons, including the issue of gender equality, given the disproportionate burden of domestic and care work carried out by women, although this phenomenon occurs in more or less acute ways, depending on the European country analyzed. According to a report by the European Institute for Gender Equality published in 2020, there is less equal sharing of daily care work in Greece, Cyprus and Poland, and in contrast, in Denmark, Sweden and Slovenia, there is more equal sharing of care work. In the same vein, the 2016 European Quality of Life Survey highlights that when it comes to labour market participation of spouses in the same household, a particular difference between Nordic or Continental and Eastern European countries seems to be related to the fact that flexibility and part-time work arrangements are less frequent in the latter.
In 2021, the European Commission and the Directorate-General for Employment, Social Affairs and Inclusion published a joint report entitled “2021 Long-Term Care Report – Trends, challenges and opportunities in an ageing society”, which reiterates the visibility that the European Pillar of Social Rights has given to the issue of long-term care as a social policy area, establishing, for the first time, the right to care at the European Union level, and highlights the impact of the pandemic on the sustainability of care across Europe, which in turn has given the topic indisputable importance on the EU’s political agenda. Unlike other more restrictive definitions offered to characterize the informal caregiver, in this report, the caregiver is seen as one who provides care not only to a family member, but also to someone in their social environment – this can be a relative, a friend or a neighbor – and the data reveal that almost half of the informal care provided in the EU takes place outside the household and that women tend to provide care more often and for longer periods of time than men, a reality that reinforces gender inequalities.
The report also stresses that informal caregivers need to receive more support and, among other findings, it points out that within the EU there is still no standardized approach to protecting this segment of the population, and in some countries support structures are underdeveloped and/or there are very restrictive conditions for accessing caregiver support allowances. For example, in Portugal, the Informal Caregiver Statute states that only a person who is linked to the dependent person by marriage or by consanguinity can be recognized as a primary or non-primary informal caregiver – to that extent, all individuals who do not share this kind of bond with the person they care for cannot be officially recognized as informal caregivers, and there are also stricter requirements regarding eligibility for the caregiver’s allowance (it can only be claimed by the primary/main informal caregiver). The topic is indeed on the agenda in the country, and very recently Order No. 100/2022 was issued, determining the amount of the compensation to be granted to the primary/main informal caregiver, in addition to setting the value of the reference income of their household in order to have access to the allowance provided for in the Statue.
There is a growing demand for the development of a more comprehensive and inclusive approach to support informal caregivers, along with greater investment in formal care, since this, besides contributing to the maintenance of the sustainability of societies whose most pronounced demographic trend is that of double aging, gradually eases the strain experienced by informal caregivers and allows care in this non-professionalized setting to be a matter of choice rather than necessity.
Protecting and supporting informal caregivers is an increasingly important task on the European Union’s political agenda, as it consists of providing or improving conditions for a segment of the population whose care work has a positive impact on social sustainability, but who, in fact, tend to experience greater social exclusion, isolation and pauperization, negative impact on physical and mental health, such as high levels of stress and anxiety.
This circumstance of marked vulnerability, which is increasingly documented, requires positive action from democratic institutions to improve their situation. As Enes (2022) notes, when discussing the construction of European citizenship, the “elevation of the status of Union citizenship enunciated by the Court of Justice has been made by responding to some vulnerabilities, turning it into a status that prevents restrictions and overcomes constraints experienced by Union citizens (…) In this process, the ECJ reforms and transforms the institution of Union citizenship, making it an instrument of inclusion of citizens through the elimination or mitigation of vulnerability factors“. Along the same lines, Torella (2016) notes that for the European Union, protecting and valuing informal care is not only relevant because of the positive impact it has on the economy, but because care consists of the foundation of society and, in this sense, as “the EU is no longer a merely economic structure but embraces and promotes human and social rights, the need to address the economic and moral elements of the caring relationship as part of a joined-up discourse becomes more evident than ever.”
The discussion by various researchers on the right to care and how to legally frame it within the European legal framework is not new, but it is a topic to which more and more importance is being attributed for the reasons listed throughout this text, and the debate on the most appropriate way(s) to regulate informal care is still open. Indeed, Busby (2011), author of the book entitled “A Right to Care? Unpaid Care Work in European Employment Law“, considers that it would not be correct to state that “the complexities inherent in attempting to provide legislative protection to those engaged in the work/care equation have been completely overlooked by the EU legislature“. In this sense, the author points out that European Union Law contains a well-developed and consolidated body of rights, and that the important task now at hand is to “identify what the introduction of a specific right to care would add to the pre-existing framework of rights (…)”.
When pondering how to regulate informal care, different perspectives emerge, possibly conflicting or even mutually exclusive, depending on the conceptual basis with which the argumentative structure is created. In this context, it is relevant to quote Westoby (2021), when the author states that “over time, the Classical dichotomy [between the public and private domains] has infused the Liberal distinction and the divisions have become blurred, incorporating the state, civil society, the market and the personal realms of life, but what has remained constant is that unpaid care work has been privatised and largely hidden”. The mainstream economic thinking, which tends to treat informal care as a practice that belongs to the private, family domain, and which cannot, therefore, be conceptualized as work that can be officially accounted for, has been challenged over the years by other viewpoints, including the feminist school which reconceptualizes the definition of “work” and which, among other principles, moves away from an individualistic model of autonomy, placing the emphasis on the relational element that permeates all human societies.
At the level of the European Union, we can see that the concept of vulnerability, to which we all may be subjected as relational and interdependent beings, is increasingly endorsed, and projects for the future are being built in the European arena based on this understanding. Indeed, the European Pillar of Social Rights Action Plan reiterates the importance of reinforcing the social dimension – “towards a social, sustainable and equitable Europe” – and, in a speech to the European Parliament on January 20, 2021, as part of the implementation of the principles of this Action Plan, President Ursula Von der Leyen stated that “[as] we overcome the pandemic, as we prepare necessary reforms and as we speed up the twin green and digital transitions, I believe it is time to also adapt the social rulebook (…) which ensures solidarity between generations.”
It is becoming increasingly clear that informal care work “is no longer a private matter of the families but increasingly a public and political issue (…) however, [it] raises many emotional, political and theoretical tensions.” These tensions are also mirrored in different political ways of thinking about the regulation of care, and this diversity of policies regarding informal care is a feature that still permeates the many nations of the Union. Nevertheless, this work, which has remained invisible for a long time in the history of societies, is coming out of the shadows and gaining prominence both in academic research and in the political agendas of national and broader organizations, such as the European Union.
In short, we emphasize that the growing recognition of informal caregivers in the European realm is based not only on the positive impact that their work has on social sustainability, but also on the conceptual basis on which European citizenship has been built.
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 European Centre for Social Welfare Policy and Research, Informal care – What is Informal Care?. Available at: Informal Care – European Centre for Social Welfare Policy and Research
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Picture credits: Endzeiter.