The Guest Blog

Guest blog post by Dr. Magdi Birtha, Policy and Advocacy Officer, COFACE Families Europe.

Family carers fill an important gap in social care provision and provide support to their disabled, or older relatives, or to their children with chronic disease, or complex needs. One thing is clear: the current situation, in which 80% of care work in Europe falls on family carers, who are left without adequate financial compensation, social rights, or a pension scheme, is simply not sustainable. COFACE Families Europe is launching a study in the European Parliament to turn policy makers’ attention to the challenges and needs of over 1000 family carers.
Today, COFACE Families Europe is launching its report ‘Who cares? Study on the challenges and needs of family carers in Europe’ in the European Parliament with MEPs Olga Sehnalova (S&D) and Marian Harkin (ALDE), to a mixed delegation of Members of European Parliament, representatives of the European Commission, national governments, civil society watchdogs, and social partners. With more than 1,000 answers from family carers across 16 European countries, the study provides a better understanding of the situation in Europe and offers policy recommendations directly from family carers to better meet their needs and tackle their social exclusion.

Who are family carers?

People do not choose to be family carers, but they unexpectedly become one when a close relative has an accident, becomes chronically ill, or when they give birth to a child with disability. They need to become a family carer, because there are no social services available where they live. Our study indicates that there is a strong gender dimension, as family carers are mostly women (85%), aged between 35 and 64, who are often part of the ‘sandwich generation’ and provide care for multiple people (27%). In our study, 1 of every 3 carers provide very high intensity care of 56 hours per week, or more, which explains that 43% of the family carers are economically inactive. There is often no one who would help them in fulfilling the caring role (31%).

Family carers face significant challenges when it comes to reconciling their professional and personal life, accessing community-based support services, their financial situation, health, administrative procedures, and social recognition. It is especially concerning that 73% of the respondents do not receive any financial compensation for their work, as carers and almost two-third of them do not have access to any kind of social benefits.

Being a family carer often results in isolation and social exclusion:1 of every 3 respondents said that they are having a hard time to make ends meet, as a consequence of their caring role. In most countries, carers reported that they felt isolated with no time, or possibility to leave their house, or take part in social activities.

Let’s set one thing clear: in 2017, in the European Union, thousands of people have to give up their employment to stay at home and provide informal care without social rights, or benefits, consequently facing poverty and will be left without a pension when reaching the retirement age. This is due to the gap in social care provision. This is why we need a stronger social Europe.

What do family carers want?

Family carers are rarely consulted by policy makers, but that doesn’t mean they don’t have a voice. Considering current social and demographic changes, politicians and policy makers should better listen to their needs to avoid a ticking bomb to explode. Imagine, if family carers were on strike tomorrow and decide to stop covering the 80% backlog in social care provision. Our social systems would simply collapse.

Family carers want to be legally recognized to receive financial compensation and access social security and adequate pension. It is not a very ambitious claim, just exactly what each of us wants in return for our work. In the same time, they also want to see public investment to personalized, community-based support services where they live, such as in-home services, or personal assistance, so families can stay together and not tore apart. This is extremely important for all generations, considering the expected increase of the ageing population in Europe in the coming years. Europe and its Member States are quite late with starting to discuss extending long-term care provision, but it is important to find solutions that are in line with the obligations of international human rights treaties, which both the EU and its Member States ratified. Human rights provisions are not just eloquent words, but obligations, calling for instance for the transition from institutional to community based care services under the United Nations Convention on the Rights of Persons with Disabilities. If European States want to be seen as leaders on human rights in the global arena, they should be rigorous about implementing UN Treaties in their own countries.

What next? Actions needed under the newly adopted European Pillar of Social Rights

COFACE Families Europe and its members representing persons with disabilities and their families, have been advocating for many years for the recognition of family carers through a number of rights and social benefits. The recently proposed EU Work-Life Balance Directive under the European Pillar of Social Rights is a good first step towards this direction and therefore COFACE Families Europe advocates for its swift adoption. Member States should address these complex challenges by measures linking currently fragmented policy agendas, such as disability rights, child protection, long-term care, social policy and social protection, work-life balance policies, health policies, housing and financial inclusion to successfully prevent thousands of families from social exclusion and poverty. There is a need for future legislative and non-legislative packages under the European Pillar of Social Rights, coupled with adequate resources and strong governance tools to promote the fundamental rights and social inclusion of vulnerable families in Europe. Without political commitment to bring people out of unemployment, poverty and social deprivation, it is hard to see a strong European Union in the future.

More about the study here:

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