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Respecting the human rights of persons with psychosocial and intellectual disabilities: an obligation not yet fully understood

Human Rights Comment
Strasbourg 24/08/2017
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Respecting the human rights of persons with psychosocial and intellectual disabilities: an obligation not yet fully understood

The human rights of persons with disabilities is one of the areas I have taken up most frequently in my country work, with the most recurrent issues being the right to live in the community and deinstitutionalisation; the right to legal capacity; and the right to an inclusive education. A considerable part of this work has focused on the rights of the persons with psychosocial and intellectual disabilities, who are among the most vulnerable and marginalized groups in society.  

In all these fields, the 2006 UN Convention on the Rights of Persons with Disabilities (hereinafter the CRPD) is an invaluable instrument because it embodies the paradigm shift in attitudes and approaches to persons with disabilities, without which their rights cannot be effectively protected. This paradigm shift entails a move from the medical model to the social model of disability, i.e. viewing persons with disabilities as active subjects with equal rights, capable of taking their own decisions and contributing to societies rather than objects of charity and medical treatment.

It is encouraging that the overwhelming majority of the Council of Europe member states (with the exception of Ireland and Monaco) as well as the EU have ratified the CRPD and that a large number of states have also ratified its Optional Protocol, which establishes an individual complaints mechanism for alleged violations of the Convention. However, after five years of examining these questions on the ground, I am convinced that many Council of Europe member states are still a long way from internalising the paradigm shift they endorsed by ratifying the CRPD. On the whole, in all the areas mentioned above, their priority has been on adjusting existing systems which are fundamentally non-compliant with the CRPD rather than reforming those systems from the ground up. Our societies still seem to consider that some people are better off in institutions or that some people are simply too impaired to make any choices affecting their own life or to benefit from a decent education alongside their non-disabled peers. It is this attitude that we need to overcome to bring about the necessary transformation.

The right to live in the community and de-institutionalisation

Article 19 of the CRPD stipulates that all persons with disabilities have the right to “live in the community, with choices equal to others”, requiring states to facilitate the full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.

Special institutions for persons with disabilities are the symbols of the most severe violation of this right:   not only do they create high risk environments for neglect, violence and abuse as I highlighted in my work concerning Bulgaria and Romania; they also hide persons with disabilities from the public eye, thereby reinforcing existing prejudicial social attitudes towards them.  I have consistently called on Council of Europe member states to stop new placements in institutions and develop transition plans for gradually moving from institutions to arrangements relying on community-based services. Nevertheless, large, segregated facilities continue to exist throughout Europe. Some European countries are still refurbishing existing institutions or even building new ones – sometimes, this has been done with the aid of EU structural funds, as reported in Bulgaria, Hungary, Lithuania and Romania. Deinstitutionalisation efforts can also be halted or reversed by austerity measures, as was the case in Spain, where budgetary cuts substantially affected the provision of community-based services.

Even though there have been modest steps towards more community-based services in certain countries, the deinstitutionalisation process has been extremely slow and riddled with major setbacks. A worrying trend I have observed in this respect is the replacement of large-scale institutions with smaller ones, as I have noted in my reports on Bulgaria, Denmark and Hungary. The material conditions in some of these facilities may be of a high standard, but they fail to afford the control over one’s life and meaningful contact with the community and the outside world that Article 19 of the CRPD requires.

Legal capacity

Control over one’s life, which lies at the very core of the CRPD, is what our legal capacity regimes are about. Many people are deprived of their legal capacity on the basis of an intellectual or psychosocial disability and are therefore deprived of their fundamental right to make decisions. This is an area where mental resistance, including from policy makers as well as legal and medical professions goes a long way in explaining the current lack of progress.

I have observed during my country visits that a large number of European states, including Denmark, Hungary and Romania, have laws that provide for substituted decision-making, including full guardianship regimes which strip the persons concerned of the freedom to make decisions about all important aspects of their lives, such as the right to have a family (marriage and parental rights), personal integrity (including consent to medical treatment), contractual matters, and the right to work. An issue of specific concern in this regard is the automatic deprivation of the right to vote for persons placed under plenary guardianship in certain countries, in blatant disregard not only of the CRPD but of the 2011 Recommendation of the Committee of Ministers of the Council of Europe on the participation of persons with disabilities in political and public life.

Moreover, procedures interfering with a person’s legal capacity are often not accompanied by appropriate procedural safeguards or where such safeguards are available, they are not applied.  For example, the right of a person to be heard before being placed under guardianship can be excluded in some domestic laws or can be disregarded in practice. Similarly, certain systems do not provide for automatic and periodical judicial reviews of the decision on deprivation of legal capacity or for adequate safeguards against conflicts of interest for guardians or undue influence or exploitation.

I have welcomed the forward momentum in some countries, for example in Austria and Finland, where promising pilot projects on supported decision-making were launched. Some other countries, like the Czech Republic and Latvia were the first to abolish plenary guardianship. Similarly, Lithuania has taken some positive steps by abolishing the possibility to declare a person “incapable” in all aspects of life. However, our ultimate aim must be to phase out all substituted decision-making in every member state and replace it with supported decision-making systems which respect the person’s autonomy, will and preferences and are accessible to all persons with disabilities, as clearly stated by Article 12 of the CRPD.  

Involuntary placement and treatment

Another sensitive and problematic issue, which is closely linked with the rights to legal capacity and to live in the community, is involuntary placement, coercive treatment and use of restraints in psychiatry. I have come across questionable practices during my country visits, such as the large numbers of compulsory hospital placements in France, or the long-standing problem of the use of coercion in Norway.

This grim picture is a result of the premise that involuntary placement of persons with mental health problems is an inevitable necessity, since they present a danger to themselves and others. I have repeatedly stressed the need to shift the focus to how coercion can be avoided in the first place, and how the person can best be supported in making healthcare choices. The states, however, have rather been focusing on designing judicial safeguards and controls, which often do not work in practice (for example in Romania, I noticed that despite existing safeguards, the persons concerned had no effective access to judicial review and were prevented from exercising their right to be heard in person).  This is precisely why I expressed a negative opinion on plans currently on-going in the Council of Europe to draw up a legal instrument (in the form of an Additional Protocol to the Oviedo Convention) which aims at protecting the human rights and dignity of “persons with mental disorder” with regard to involuntary placement and involuntary treatment by reviewing the effectiveness of the applicable legal safeguards.

Using the existence of a disability as ground for involuntary confinement not only amounts to arbitrary deprivation of liberty but also constitutes discrimination on the basis of disability in breach of Article 14, §1(b) of the UN CRPD which reads “the existence of a disability shall in no case justify a deprivation of liberty.” as well as Article 25 (d) of the UN CRPD which establishes the right for persons with disabilities to enjoy the highest attainable standard of health care, without discrimination and on the basis of free and informed consent.

I have welcomed a number of good practices which show that alternatives to coercion exist, such as Finland’s Open Dialogue approach to acute psychosis which involves the patient in all treatment decisions and appears to have a very high success rate. I invite the member states to draw inspiration from these good examples and reform their mental health care systems with the aim of drastically reducing and progressively eliminating coercive practices in psychiatry. Non-consensual placements in closed settings – including social care homes- should be limited to life-threatening emergencies as a last resort and must always be based on objective and non- discriminatory criteria which are not specifically aimed at people with disabilities.

Inclusive education

Education of persons with disabilities is another area where member states are still far from fulfilling Article 24 of the CRPD, which requires them to ensure an inclusive education system at all levels.  

Separate education is at variance with the right of children with disabilities to quality education on the basis of equal opportunity, as it is often characterised by low expectations, sub-standard teaching and worse material conditions. It also reinforces and validates the marginalisation of children with disabilities in the later stages of their lives, including their access to the labour market (as specialised education does not usually provide children with any diploma at the end of their studies). For their non-disabled peers, teachers, and others in the community, separate education means being deprived of knowledge about human diversity and essential life skills.

My own work indicates that separate education remains the norm in many member states. In Belgium and the Czech Republic, a high number of children with disabilities are still segregated in specialised schools with little prospect of being reintegrated into mainstream education. Similarly in France, almost 80% of children with autism do not have access to mainstream education, a situation which the European Committee of Social Rights repeatedly found to be in violation of the European Social Charter in its decisions taken within the framework of the collective complaints procedure. Even in countries like Spain which accomplished a high rate of inclusion, austerity measures have led to existing individualised supports being withdrawn. In other instances, countries appear willing to settle for some form of segregation and rename segregated forms of education under a more acceptable brand (such as “appropriate education” in the Netherlands) or even as inclusive education (for instance,  “inclusive education centres” in Romania). Often these shortcomings are justified by the education authorities on grounds of lack of resources to ensure accessibility or provide individual supports. However, lack of resources should never serve as an excuse for sub-standard or separate education for children with disabilities.

The way forward

As the above examples illustrate, the member states of the Council of Europe have yet to fully internalise the paradigm shift mandated by the CRPD.  Without this shift even well-intended policies are bound to end up reproducing isolation rather than supporting independent living. Member states should show leadership and start rethinking the systems that are fundamentally non-compliant with the CRPD as a whole, instead of trying to adjust them. They should intensify their efforts to reform their legislation to eliminate practices incompatible with the CRPD and back them up with comprehensive and well-funded action plans. Above all, policy makers should live up to the rallying cry of “Nothing about us without us!”, which is the guiding spirit behind the CRPD, by ensuring the active involvement of persons with disabilities in the development of policies that profoundly affect their lives.

Nils Muižnieks

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