ENNHRI’s project on The Human Rights of Older Persons and Long-term Care has identified 13 rights protected in binding international and European human rights conventions. All European states have a responsibility to protect and promote these rights in the context of older persons with long-term care needs. But there is one group that may be getting lost in the equation – family carers.

Informal care in Europe: the policy context

According to Eurocarers, 80% of all care in Europe is provided by informal carers – i.e. people providing usually unpaid care to someone with a chronic disease, disability or any other long-lasting health or care need, outside of a professional or formal framework.

About half of all informal carers in Europe provide less than ten hours of care per week, most often to a parent, spouse or disabled child. However, in some European countries, over half of all informal carers provide intensive care – over twenty hours per week, depending on the availability of formal services and the caring needs of their relative.

This intensive level of caring has many implications for informal carers’ lives: carers are less likely to be employed, and when they do work, they are likely to do so on a part-time basis. There is evidence that caring responsibilities, when coupled with limited formal support, has a negative impact on career continuity and job choices. This in turn has an impact on disposable income and so, for individuals of working age, caring is associated with a higher risk of poverty. While researchers have started to identify some positive aspects of caring (such as a self-repported satisfaction with life and psychological well-meaning), informal carers report higher than average rates of psychological distress symptoms, such as anxiety and depression, which in turn negatively affect their physical health.

Policy trends

Population ageing means that there will be a greater reliance on family carers throughout Europe the medium- to long-term. The EU has taken steps to address informal carers’ needs (e.g. through the European Pillar of Social Rights, the Europe 202) Strategy on Employment and the European Gender Empowerment Strategy). In addition, some European countries already have good systems of support for informal carers in place, and others are developing plans to ramp up support. However other countries have less well-developed financial support, respite care, back up from trained formal providers and health promotion and protection for carers. This is in spite of the fact that informal care in EU Member States contributes between 50 % to 90% of the overall cost of formal long-term care provision.

With a likelihood of greater reliance on informal carers, and no guarantee of the supports required to ensure their well-being, it is important to highlight that informal carers have the same human rights as everyone else and it is the responsibility of the State (the government and other statutory bodies) to adequately protect and promote those rights.

Human rights of informal carers

Human rights reflect the minimum standards necessary for people to live with dignity. The human rights of individuals living in Europe are protected through a number of international and regional binding human rights treaties and other instruments adopted globally since 1945, as well as through domestic human rights legislation.

International human rights law does not explicitly address the issue of unpaid care work and States and human rights mechanisms often fail to consider informal carers when analyzing the implementation of human rights standards. However, informal carers have the same rights as all other individuals. As informal carers face particular challenges, human rights mechanisms (and the courts) suggest that the State has a responsibility to provide additional support to this group in order for them to enjoy the same rights as everyone else.

Research by the Northern Ireland Human Rights Commission has identified the rights of informal carers and the duties of (the UK) State (government and other statutory bodies) to support them:

• The right to a private and family life
  Provides for the right to identity, self-determination, physical and moral integrity, maintenance of relationships with others and a settled and secure place in the community. Court rulings have stipulated that the State has a responsibility to provide adequate support in order for families to have the right to a meaningful private life, as well as the need for a ‘fair balance’ in terms of the responsibilities of family carers – putting an onus on the State to provide supports to ensure this balance is struck.
• The right to an adequate standard of living
  Similarly, States have a responsibility to make sure that all individuals have an adequate standard of living for himself and his family, including adequate food, clothing and housing, and to the continuous improvement of living conditions. The State has an obligation to take appropriate steps to ensure the realization of this right.
• The right to social security
  Everyone has the right to social security, including social insurance. In circumstances where any individual has inadequate resources to maintain an adequate standard of living the State is under an obligation to provide benefits by way of a social security system. In providing the benefits, the State is required to take into account the resources and circumstances of the child and persons having responsibility for the maintenance of the child or adult dependent.
• The right to work
  While informal carers may experience difficulties exercising the right to work due to the absence of alternative care provision or inflexible working arrangements within the labour market, they have the right to work. To help informal carers realise this right, States have an obligation to provide technical and vocational guidance and training programmes, policies and techniques to achieve steady economic, social and cultural development and full and productive employment under conditions safeguarding fundamental political and economic freedoms to the individual.
• The right to education
  The State has an obligation to facilitate individuals to exercise the right to education. Caring responsibilities may inhibit the ability of an informal carer to engage fully in educational opportunities. The State must ensure children in compulsory education are not employed in such work as would deprive them of the full benefit of their education. The provision of caring duties is not a form of employment but can have similar detrimental implications on the ability of an individual (including a child) to engage in education.
• The right to health
  Informal carers often encounter physical or mental health problems related to their caring responsibilities. Furthermore the time commitment involved in caring can inhibit the ability of carers to access preventative treatments. States have an obligation to ensure “the provision of equal and timely access to basic preventive, curative, rehabilitative health services and health education, particularly for the vulnerable or maginalised.
• The right to participation
  There are many decision making processes relating to both carers and the cared for person. Informal carers, including children who are capable of forming their own views, have the right to express their views, particularly in relevant judicial or administrative proceedings, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law.
• The rights of persons with disabilities
  Carers may have disabilities and with the increasing proportion of persons caring into older life it is likely that a growing proportion of carers will have acquired disabilities. The UN Convention on the Rights of Persons with Disabilities (CRPD) explicitly acknowledges the critical role played by families for the promotion of human rights and the inclusion of persons with disabilities in society. The realisation of the rights of persons with disabilities is strictly interdependent with the quality of life of their family members, and can be very much influenced by the circumstances affecting parents, partners, children and siblings living with them. Various obligations arising under the CRPD implicitly or explicitly commit public authorities to put families in the conditions of contributing to the full and equal realisation of the rights enshrined in the text. Some articles make explicit reference to measures to sustain families, while other provisions implicitly require a mainstreaming of the family dimension in order to ensure an effective implementation.
• Children’s rights
  All children should grow up in a family environment, in an atmosphere of happiness, love and understanding. In circumstances where a child is required to spend a significant amount of their time performing caring duties their development may be hampered. States have a responsibility to give the necessary support to children care to ensure their well-being.

A body of soft law provides further, more explicit guidance on the rights of informal carers. The Vienna International Plan of Action on Ageing at Recommendation 26, states:

Appropriate support from the wider community, available when and where it is needed, can make a crucial difference to the willingness and ability of families to continue to care for elderly relatives.

The Madrid International Plan of Action on Ageing (2002) recommends that States: “Develop programmes to support self-help and provide respite care for patients, families and other carers”. The Council of Europe Action Plan to Promote the Rights of People with Disabilities (2006) recommends that States: “recognise the status of carers, by providing them with support and relevant training”.

Conclusion

Arguably, the lack of support for informal carers is a failure to protect and promote informal carers’ human rights. Given that informal carers tend to be something of an invisible workforce, this is perhaps unsurprising. However, raising awareness amongst both informal carers themselves and policy-makers is the first step in ensuring their full enjoyment of their rights.

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