Committee on Human Rights
Chaired by Nadia Schnider (CH)
The Topic at a Glance
Since the 19th century, institutions and asylums have been the primary model of care for people with mental disabilities. For a long time, institutionalisation was deemed the best way to care for people with disabilities and it remains a heavily relied upon tool to this day. Over a million people with mental disabilities were living in institutions in the EU as of 2007. However, research has shown that institutionalised care often leads to worsened conditions of patients due to the less personalised style of the care, social isolation as well as possible abuse and neglect. Especially compared to community-based care models, the adverse effect of institutions on inhabitants is blatant. Moreover, it is noteworthy that across Europe people with mental disabilities are virtually excluded from political participation, meaning that their perspectives are seldom incorporated into the design of new legislature. This is due to the fact that the majority of Member States set being in full possession of legal capacity1 as a deciding criterion for the participation in political processes. For this reason, the voices of people with mental disabilities have not been reflected in laws on institutionalised care in the past, despite being the most strongly affected addressees. Similarly, the loss of legal capacity means that the right to self-determination of people with mental disabilities is restricted when they are placed under guardianship2. As a result, decisions regarding care but also other areas of life such as the pursuit of a job, free movement, economic participation and romantic relationships are decided by the guardian in place of their ward3. Considering the adverse effects of institutionalised care and the political exclusion of people with mental disabilities, what can the EU do to guarantee that all models of care respect human rights?
1 Legal capacity is defined as the ability of a person to be the bearer of rights, such as political rights or the right to self-determination, and obligations. This is commonly based on having reached adulthood and being competent to judge matters of everyday life.
2 Guardianship is the practice of transferring the agency of people with mental disabilities who don’t possess legal capacity onto another person, oftentimes being a relative or spouse.
3 People under guardianship are referred to as wards.
- Persons with disabilities are defined by the United Nations (UN) and EU as people who have long-term physical, mental, intellectual or sensory impairments which may hinder their full and effective participation in society in day-to-day life. However, this definition leaves a large room for interpretation on which disorders and degrees of severities are being referred to, especially when it comes to mental disabilities. Common mental illnesses causing disability are dementia, depression, bipolar disorder, obsessive compulsive disorder (OCD) and schizophrenia. Other conditions frequently named under mental disabilities are down syndrome, attention deficit hyperactivity disorder (ADHD) and learning disabilities.
- Invalidity is defined as an incapacity to work because of prolonged illness or disability. In order to offset the loss of income due to invalidity, affected persons receive invalidity and disability benefits. Among Member States there is no unified approach but two calculation methods for invalidity relief are currently in use, commonly referred to as type A and type B legislation.
- Discrimination is the unjustified unequal and disadvantageous treatment of groups or individuals on the basis of a sensitive criterium4 such as disability, and it is prohibited by Article 21 of the EU Charter of Fundamental Rights.
- Institutionalisation refers to the practice of placing mental illness patients and persons with mental disabilities in asylums and similar closed institutions, where they are subjected to around-the-clock surveillance and care, and live separated from the rest of society.
- Community-based care represents the opposite of institutionalisation, wherein patients and persons with disabilities remain located and receive care within their communities and families.
4 Sensitive criteria are characteristics of humans that have been consistently linked to victims of discriminatory treatment. The EU Charter of Fundamental Rights lists sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political opinion, national minority, property, birth, disability, age and sexual orientation as relevant sensitive criteria.
The European Commission is the executive body of the EU responsible for developing and implementing policy based on the decisions of the European Parliament. The Commission is organised in departments for different policy areas, the Directorates-General. For instance, the Directorate-General for Employment, Social Affairs and Inclusion (DG EMPL) has the leading competence on creating policy concerning the social and economic integration of people with disabilities.
The Council of Europe (CoE) is a human rights group which states can join by signing the European Convention on Human Rights (ECHR). The Council counts 46 members, including all 27 EU Member States. In case of violations of the Convention, the European Court of Human Rights may be called upon by citizens in order to condemn the injustices. However, it is important to note that the CoE and European Court of Human Rights are independent from EU institutions while Member States are obligated to abide by the contents of the ECHR as signatories.
The European Union Agency for Fundamental Rights (FRA) is a politically independent centre of reference, working to promote and uphold high standards of human rights in the EU with special attention to discrimination on the basis of age, disability and ethnic background,
and access to the judicial system. The FRA works by compiling relevant information into comprehensive databases and by advising stakeholders including EU institutions, Member States and the Council of Europe.
The European Expert Group on the Transition from Institutional to Community-based Care (EEG) is a coalition of stakeholders in the field of mental disabilities ranging from people with disabilities and their families to service providers, advocating for a shift from institutionalisation to community-based care models. The EEG is relied upon by the Member States for sharing expertise, advising on new policies and offering training seminars.
Non-governmental organisations (NGOs) are non-profit organisations that operate independently from governments and are typically dedicated to furthering a certain cause. Noteworthy NGOs in the field of mental disability are the European Disability Forum, Mental Health Europe, Inclusion Europe and the Validity Foundation.
A New Model of Care
In the 19th century, residential institutions were established with the aim of providing people with mental disabilities with food, shelter and professional care. However, evidence has shown that long term institutionalisation has an adverse effect on residents’ well-being. Social isolation from communities and families has especially been linked to negative effects on patients’ development and happiness, which was exacerbated during the COVID-19 pandemic. Due to this, the European Commission has identified Deinstitutionalisation as an aim in its inclusion policy. However, the transition to community-based care is not an easy one. Family and community members of people with mental disabilities do oftentimes not possess the knowledge a caretaker in an institution has. Furthermore, the full time care of family members can cause considerable amounts of distress. Not to be forgotten, full time care of a disabled family member has been linked to a shift towards “traditional” gender roles, with the majority of community care work being done by women, and often unpaid.
As stated by Article 3 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), Article 14 of the European Convention on Human Rights as well as Article 21 of the Charter of Fundamental Rights of the EU, people with disabilities have equal rights as the rest of the population and are protected from discrimination. These guarantees of non-discrimination are binding to all EU Member States. However, this protection from discrimination is only theoretical at times, seeing as people with mental disabilities do not possess the legal capacity necessary to assert their rights before a court of justice, while the pursuit of legal action against discrimination mostly lies with the guardian. Furthermore, the enactment of other rights and freedom are also tied to the possession of legal capacity, such as political participation and the right of self-determination in matters such as place of residence or the pursuit of romantic relationships and family. Moreover it is noteworthy that wards who do not possess legal capacity have little to no legal instrument to appeal against a decision of their guardian.
Social and Economic Exclusion
The institutionalisation of people with mental disabilities causes a social exclusion of this group through their physical separation from society. While the EU has been taking strides towards deinstitutionalising care for people with mental disabilities, thus takingly the physical exclusion, other barriers to inclusion still prevail. Stigma and prejudice against mental illnesses and disabilities shape aspects of everyday life from the negative attitude of the general public to the maltreatment and discrimination of people with mental disabilities. Furthermore, people with disabilities are among the least integrated groups when it comes to employment. This is largely due to fewer opportunities to attain academic qualifications and vocational training, prejudice and barriers in the employment structure such as inflexible working hours.
Measures in Place
The UN Convention on the Rights of Persons with Disabilities (UNCRPD) is an international treaty signed by all EU Member States, aiming to promote, protect and ensure the rights of people with disabilities. However, the Convention is not directly applicable in most signatory states until it is ratified by national parliaments and integrated into Member States’ respective legislatures.Similarly, the European Convention on Human Rights is a human rights treaty signed by all EU Member States. Most fundamentally, the Convention aims to protect people with mental disabilities as Article 14 prohibits the governments from discriminating against humans on the basis of disability.
The European Strategy for the Rights of Persons with Disabilities 2021-2030 is the strategy with which the EU aims to ensure that people with disabilities can enjoy their human rights and receive equal opportunities for social and economic participation. The strategy focuses on fighting discrimination, de-institutionalisation and increasing the accessability of justice, education, culture, tourism and sport.
In the EU Funds Checklist issued in 2021, the EU identifies the promotion of community-based care as a main objective. Through this, programmes aimed at de-institutionalisation and improving community based care can apply for financial assistance from the European Social Fund Plus (ESF+).
The European Commission launched a pilot programme for the introduction of a universally recognised EU Disability Card with eight Member States in 2016. Following the immense success of the pilot programme, the Commission intends to introduce the widespread use of the disability card for use in the areas of culture, leisure, sport and transport by the end of 2023.
Figure 1: An infographic by the FRA summarising the EU’s strategy for the enactment of the UN’s Disability Convention.
Food for thought
- Considering the European Commission’s aim of largely deinstitutionalising care for people with mental disabilities, what can the EU do to ensure appropriate standards of care are met?
- Keeping in mind the loss of legal capacity many people with mental disabilities face, how can the EU ensure their rights are being respected and protected?
- An infographic on the five success factors on the road to independent living for people with disabilities, 2018, European Union Agency for Fundamental Rights.
- A policy brief on the impact of the COVID-19 pandemic on people with disabilities in the EU, 2022, Eurofound.