Persons with intellectual and psycho-social disabilities must not be deprived of their individual rights

Persons with intellectual and psycho-social disabilities must not be deprived of their individual rights

Persons with intellectual and psycho-social disabilities are today routinely placed under a guardianship regime in several European countries - they are deprived of their “legal capacity”. In the eyes of the law they are seen as non-persons and their decisions have no legal relevance. This policy violates agreed human rights standards.

The bulk of the legal capacity systems in Europe are out-dated and in urgent need of reform. The automatic loss of human rights of those placed under a guardianship regime is a practice which must be changed.

Being recognised as someone who can make decisions is essential for everyone who seeks to take control over his/her life and participate in society on an equal basis with others. Having legal capacity enables us to choose where and with whom we want to live, to vote for the political party we prefer, to have our health care decisions respected, to control our own financial affairs and to have access to cinemas and other leisure activities.

No exception should be made from the assumption that all adults of majority age have legal capacity. In a society respecting human rights also persons with intellectual and psycho-social disabilities must be included.

This requires that support alternatives be developed to enable some individuals to make decisions for themselves and expand their capacities to do so. This obligation on governments is prescribed in the landmark UN Convention of the Rights of Persons with Disabilities from 2006, now ratified by most European states.

Equal recognition before the law

The Convention’s Article 12 (on the equal recognition before the law) signals a deeper understanding of equality: all persons with disabilities shall enjoy legal capacity on an equal basis with others in all aspects of life and shall be provided with the support they may require in exercising their legal capacity.

This shift from the withdrawal of legal capacity to the right to be supported in exercising the legal capacity reflects a profound attitude change: from charity to a rights-based approach and from paternalism to empowerment. The lack of legal capacity has all too often hampered the struggle of persons with disabilities to reclaim their human rights, as they have had no legal possibility to challenge violations of these rights.

The European Court of Human Rights has sent similar signals. In its recent Grand Chamber judgment in the case of Stanev v. Bulgaria, it highlighted the growing importance which international law, including the UN Convention, now attaches to granting persons with psychosocial disabilities as much legal autonomy as possible.

The case concerned a man who had been put under partial guardianship and in de facto detention in a social care home. The Court found that the deprivation of liberty of the applicant as well as his lack of access to court to challenge the lawfulness of his detention and to seek restoration of his legal capacity had breached the European Convention on Human Rights.

Supported decision-making

The support called for in Article 12 of the UN Convention can take a variety of forms: for instance, support to enable someone who communicates in alternative ways to convey messages to others; assistance in contacts with the authorities; or help to define options for living and other arrangements.

The choices rest with the individual. Third parties – public officials, doctors, social workers, bank employees and others – must in turn take measures to enable the individual to enter into agreements and take decisions with legal consequences.

A network of supporters should be recognised – but not imposed on the individual – and these supporters may provide information and options to help him/her to make decisions. The Convention states that there should be appropriate and effective safeguards in order to prevent abuse. The preferences of the person concerned should be respected and care should be taken to ensure that there is no conflict of interest involved or undue influence being exercised.

The sad truth is that most Europeans with intellectual or psychosocial disabilities who would like to have such support are currently asked to give up their legal capacity and accept that someone else takes decisions on their behalf.

A radical rethink is needed

The rights-based approach requires a respectful attitude from the community and a capability to listen which is not present everywhere. Moreover, there will be situations of communication difficulties despite genuine efforts to support the individual. In such cases it may be necessary to resort to ‘best interests’ reasoning – seeking to find out what the person would have wanted, if communication had worked.

However, even such situations are no argument for depriving these individuals of their legal capacity. Instead, different types of support should be developed, in dialogue with the users, so that a better understanding of their choices and preferences can emerge.

What is called for is no less than a radical overhaul of present policies. All European governments should review their existing legislation on legal capacity. They should abolish mechanisms for full incapacitation and plenary guardianship.

They should stop depriving persons with disabilities of their voting rights and placing them in de facto detention in institutions against their will.

They should also recognise that far more efforts are needed to develop supported decision-making alternatives for those who want assistance in making choices or communicating them to others.

Thomas Hammarberg

WHO GETS TO DECIDE?

Right to legal capacity for persons

with intellectual and psychosocial disabilities