Steps forward in protecting persons with disabilities in Bulgaria

24 Chasa, 6 July 2016

Imagine tomorrow you are forced to leave your house and move to an impersonal, large social care institution, far away from your family and friends. You cannot challenge this decision, because somebody has the legal right to decide in your place. From now on, you are no longer in control of your life. If you could imagine what that would feel like, you have experienced for a few seconds what persons with intellectual and psycho-social disabilities have endured for years in Bulgaria.

This system is called guardianship and has been the prevailing way of dealing with persons with intellectual and psycho-social disabilities in many countries, including in Bulgaria. Such a system deprives these persons of a key element that defines a person: the ability to take decisions. Basic everyday-life choices related to employment, health, education, property, finances, family, are taken away from them and entrusted by law to a guardian.

Meant to protect persons with intellectual and psycho-social disabilities, more often than not this system causes in reality more harm than good. Some of the dangers of this system were exposed in 2012 by the European Court of Human Rights which condemned Bulgaria for inflicting to Mr Rusi Stanev, a Bulgarian citizen with intellectual disabilities, the treatment you have imagined for a few seconds at the beginning.

Hopefully, Mr Stanev’s name will no longer be associated to this dramatic event only. Bulgaria’s Ministry of Justice has prepared a bill which has the potential to turn the country’s system of guardianship on its head.

This progressive bill – prepared with wide and transparent consultation – aims to abolish full and partial guardianships and replace them with support measures. Moreover, it allows for a regular judicial review of the support measures and the possibility for the persons concerned to request at any time such judicial review.

This bill can bring Bulgarian legislation into line with its obligations under the UN Convention on the Rights of Persons with Disabilities, which requires state parties to move from substitute to supported decision-making models that assist persons with disabilities in taking decisions in an autonomous way. It would also help Bulgaria to uphold other international human rights obligations, in particular those deriving from the jurisprudence of the European Court of Human Rights and of the European Social Charter.

More importantly, this bill can set in motion a process which would change the lives of thousands of people with disabilities in Bulgaria. They would no longer be deprived of their basic rights and freedoms to decide how to live, whom to vote for, how to manage finances or how to spend leisure time. The law would finally recognise their human dignity and treat them as equal with other citizens. 

Regrettably, there is still resistance among legislators, medical professionals and social care personnel to abandon the century-old paternalistic treatment of persons with intellectual and psycho-social disabilities. Some fear that such a change could undermine the protection of these persons. Others consider that the country is not ready to face the numerous changes the law would require, not only from a cultural point of view, but also in terms of infrastructures.

I understand some of these views. Legislation alone will not change things overnight. True change requires the mobilisation of additional resources, as well as the adoption of important adjustments to the country’s system of social care and assistance to persons with disabilities. Adapting to a new, human rights-based way of approaching intellectual and psychosocial disabilities will also require a concerted effort by persons with disabilities, their families and friends, disability-rights NGOs, the private sector, and by society as a whole.

These obstacles are real, but surmountable. Some countries, including Canada, Sweden and the United Kingdom, have faced similar problems, but eventually moved forward. They undertook various initiatives to promote supported decision-making which proved effective in helping persons with intellectual disabilities to live more independently and become more active members of society.

Moreover, a growing body of scientific research shows that supported decision-making systems make persons with intellectual disabilities happier, increase their self-confidence and improve their quality of life.

With some political will, Bulgaria can become a model country in this field. Adopting the law on supported decision-making would provide a powerful boost to the country’s action plan for the application of the UN Convention on the Rights of Persons with Disabilities which is running until 2020.

Resources are of course necessary to crown these efforts with success. Though less rich than other countries engaged in this process of change, Bulgaria can still find ways to sustain the necessary adjustments. In particular, resources should be reallocated from the funding of institutions for persons with disabilities to the development of individualised support services.  There are also EU funds available that can be used to promote reforms in this area.

With a carefully designed and adequately resourced supported decision-making system, Bulgaria can finally provide persons with intellectual and psycho-social disabilities with the support and protection they need to make decisions about their own lives, and with the necessary safeguards to prevent abuse, exploitation and other wrongdoing.

The bill the Council of Ministers will soon discuss represents the way forward. Bulgaria has to start treating persons with intellectual disabilities as autonomous human beings with real rights. It is an occasion that should not be wasted.

Nils Muižnieks, Council of Europe Commissioner for Human Rights