European Coalition of Community Living - Tuesday, September 15, 2009
Thomas Hammarberg, Council of Europe Commissioner for Human Rights, published a "Viewpoint" yesterday in which he said that the rights of persons with intellectual disabilities across Europe "are still not taken seriously enough", and called on governments not merely to plan for action, but to take action.
Noting that "housing and other services in community-based settings have met obstacles and been delayed", the Commissioner says: "[c]onditions in some of the 'social care homes' are appalling in many countries across Europe. In these segregated institutions very little, if any, rehabilitation is provided. Not infrequently, persons with intellectual disabilities are placed together with persons having psychiatric problems and unnecessarily given sedatives against their will. They are in some cases deprived of their liberty and treated as if they were dangerous."
Commissioner Hammarberg berates European governments for their failure to follow through on de-institutionalization policies, for not establishing monitoring procedures, and for inadequately resourcing policies which are supposed to move the locus of support from institutions to community-settings. Citing a few positive examples from eastern European countries, the Commissioner considers that progress is possible but there is a long way to go to achieve sustainable change.
Referring to the case of MDAC v. Bulgaria, the Commissioner points out that there is still widespread segregation of children with intellectual disabilities who are discriminated against in their right to education. He calls for better early intervention so that services can be provided to a child from a young age. The Commissioner encourages Governments to ensure that persons with intellectual disabilities do not face discrimination in their right to health, asserting that "the medical system has failed to meet the particular needs of persons with intellectual disabilities." He highlights the barriers which people with intellectual disabilities face in the labour market, and that sheltered employment has sometimes contributed to further isolation.
The Commissioner notes that only 14 out of the 47 Member States of the Council of Europe have ratified the United Nations Convention on the Rights of Persons with Disabilities. He reminds governments that this Convention is unique in that it, "requires states to set up a mechanism to coordinate government action; to establish an effective system of independent monitoring; and to invite civil society - and in particular persons with disabilities themselves and their organisations - to take part in the monitoring."
The Commissioner's Viewpoint touches briefly upon the right to legal capacity and supported decision-making for persons with disabilities. In doing so, the Commissioner points out that someone's intellectual disability "is no justification for a policy to routinely incapacitate people with mental disabilities and put them under legal guardianship where they have no say in important decisions affecting their lives". The Commissioner will publish another Viewpoint dedicated to the issue of legal capacity on 21 September 2009. This will be timely, coming one month before a day of general discussion on the right to legal capacity in Geneva by the UN Committee on the Rights of Persons with Disabilities.
VIEWPOINT
Persons with mental disabilities should be assisted but not deprived of their individual human rights.
[21/09/09] Individuals with mental health or intellectual disabilities have been discriminated, stigmatised and repressed even in recent years. Their mere existence has been seen as a problem and they have sometimes been hidden away in remote institutions or in the backrooms of family homes. They have been treated as non-persons whose decisions are meaningless.
Though much of this has changed with the progress of the human rights cause, persons with mental health or intellectual disabilities do still face problems relating to their right to take decisions for themselves, also in important matters. Their legal capacity is restricted or deprived completely, and they are placed under the guardianship of someone else who is entitled to take all decisions on their behalf.
Some persons with mental health or intellectual disabilities may have objective problems in representing themselves to authorities, banks, landlords and other such institutions – as a consequence of their actual or perceived impairments. They may also be manipulated to make decisions which they would otherwise not make.
A basic principle of human rights is that the agreed norms apply to every human being, without distinction. However, the international human rights norms have been denied to persons with disabilities. It was this failure which prompted member States of the United Nations to adopt the Convention on the Rights of Persons with Disabilities, which emphasises that people with all types of disabilities are entitled to the full range of human rights on an equal basis with others.
The aim is to promote their inclusion and full participation in society. When we deprive some individuals of their right to represent themselves we contradict these standards.
How then should the concrete situations be handled?
The UN Convention addresses this issue in its article 12 which starts by stating that governments shall “recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life”.
The Convention recognises the reality that some people because of their impairments or external barriers are unable by themselves to take important decisions. For them the Convention requests governments to provide access to support they may require in exercising their legal capacity.
The nature of this support is a crucial aspect. Supported decision-making is a developing field in some Council of Europe member States, and the practice has been embedded for several years in many Canadian provincial laws. What happens in those jurisdictions is that a network of supporters are recognised – but not imposed on the adult – and these supporters provide information and options for the adult to make a decision.
The Convention states that there should be appropriate and effective safeguards in order to prevent abuse. The rights, will and preferences of the concerned person should be respected and there should be no conflict of interest and undue influence between those supporting the adult, and the adult him- or herself.
Further, the arrangement for the support should apply for the shortest time possible and be subject to regular review by a competent, independent and impartial authority or judicial body.
These formulations allow for a range of alternatives to guardianship to be provided for adults with disabilities. The starting point for the reforms is full legal capacity combined with the right of the individual to seek support. The exercise of this support should always be regulated with safeguards to avoid that the trust be misused.
This is different from the actual practice in a majority of countries, including in Europe, where there has been a tendency to declare almost routinely people with mental health and intellectual disabilities legally incapable and put them under legal guardianship.
However, the UN Convention – as well as the Council of Europe 2006-2015 Action Plan to promote the rights and full participation of people with disabilities in society – may have had a positive effect in some countries. A European Union high-level group on the implementation of the Convention reported recently that it had got assurances about a review process on this issue from the Czech Republic, France, Hungary, Ireland, Latvia, Portugal and Slovakia.1
The report also referred to the fact that these countries and others “had all expressed an interest in sharing information by organising conferences, expert working groups and seminars on the topic, involving civil society and all relevant players, including the judiciary, and discussing legal terms with a view to developing legislation, policy and practice in this area”.
Such discussions are necessary in order to make real the shift of laws and policies which were agreed in principle when the UN Convention and the Council of Europe Action Plan were drafted and agreed. Obviously, the case law of the Strasbourg Court will be studied in detail during this process, and more litigation before that Court is needed in order to better integrate the UN Convention’s approach into the European jurisprudence.
In a case last year (Shtukaturov v. Russia) the Court had to deal with deprivation of legal capacity; enforced hospitalisation and treatment without consent. Mr Shtukaturov, an adult who was diagnosed with schizophrenia, had been declared of his legal capacity in a decision made without his knowledge at the request of his mother, who had become his guardian. He was legally prohibited from challenging the decision in Russian courts and had subsequently been detained in a psychiatric hospital.
After reviewing his case, the European Court of Human Rights stated that “the existence of a mental disorder, even a serious one, cannot be the sole reason to justify full incapacitation”. The Court stated that domestic legislation must provide for a “tailor–made response”. The Court found that the decision-making process depriving him of his legal capacity constituted a disproportionate interference with his private life, and found various violations of the European Convention on Human Rights.2
This judgment must be interpreted to promote an approach in line with the UN Convention. Any restrictions of the rights of the individual must be tailor-made to the individual’s needs, be genuinely justified and be the result of rights-based procedures and combined with effective safeguards.
Interestingly, the UN Convention underlines the particular importance of protecting the right of persons with disabilities to own property, control their own financial affairs and to have equal access to bank loans and mortgages.3 This appears to be based on the experience that decisions on incapacitation in this area have been taken against the spirit of human rights.
I would like to add that persons with mental health and intellectual disabilities should have the right to vote in elections and stand for election. Though this is stated clearly in the UN Convention (Article 29), individuals in a number of European countries are excluded. Being deprived or restricted of their legal capacity they have been denied these rights as well. This has further exacerbated their political invisibility.
We should remember that there is a great difference between taking away the right to take decisions about one’s life and to provide “access to support”. The first views people with disabilities as objects of treatment, charity and fear. The second places the person with disabilities at the centre of decision-making and views them as subjects entitled to the full range of human rights.
Thomas Hammarberg
Notes:
- Information note to accompany the second Disability High Level Group Report on the UN Convention (2009). 4 June 2009, p. 5.
- Shtukaturov v. Russia, 27 March 2008. Also see the pending case of D.D. v. Lithuania (Application No. 13469/06) lodged on 28 March 2006. The statement of facts was published on the Court’s Website on 10 December 2007.
- This is spelled out in the fifth and last paragraph of Article 12 of the UN Convention. Note also in this regard the case Winterwerp v. the Netherlands in which the European Court ruled that the capacity to deal with one’s property is a “civil right” and protected by the European Convention.
Links:
"Also available at the Commissioner's website at www.commissioner.coe.int"