Validity, with the contribution of Bulgarian experts including persons with disabilities, has launched a globally relevant new report entitled “Deinstituionalisation and life in the community in Bulgaria“. The report points out that the Bulgarian deinstitutionalisation (DI) process has failed thousands of children and adults with disabilities in the country, condemning many to either life in institutional settings or rendering them without any practical support in the community. Unfortunately, Bulgaria’s faulty model of DI has come to influence DI strategies around the world. Importantly, our findings show that the Bulgarian DI process has instead strengthened a parallel system for persons with disabilities: “deinstitutionalised” persons are required to live in segregated group homes, where they have no real possibility to choose, for example, whether they want to live there or who they want to live with. The process continues to be funded by the European Union in flagrant disregard of its obligations under the Convention on the Rights of Persons with Disabilities, and despite the opposition of persons with disabilities in Bulgaria and across the continent.

Click here to read the Report in English.
Click here to read the Report in Bulgarian.

DI has been on the agenda in Bulgaria since 2010. The report provides an historical and critical account of the extent to which the Bulgarian DI process has achieved its stated purpose, realising the right to independent living and inclusion in the community. The starting point of the report is that

“[a]n institution is any place in which people who have been labelled as having a disability are isolated, segregated and/or compelled to live together. An institution is also any place in which people do not have, or are not allowed to exercise control over, their lives and their day-to-day decisions. An institution is not defined merely by its size” (source: European Coalition for Community Living (without date) What Does Exclusion From Society Mean? p. 7).

What we found is that instead of conducting a genuine DI process, Bulgarian policy and decision-makers, together with the support of the EU, are responsible for a process of trans-institutionalisation, meaning that individuals are moved out of large-scale institutions and subsequently end up in smaller types of institutions that are just as segregated and cut off their communities as ever, with the mushrooming of so-called ‘group homes’ across the territory, often on the periphery of communities. We also highlight that persons with disabilities and their representative organisations have not been involved meaningfully in the DI process. Even where persons with disabilities and their representative organisations were invited to participate in official meetings, their expertise was overlooked, and their views were not taken into consideration.

The lead author of the report, Nadezhda Toteva Deneva said:

“If there were mainly large institutions before, now there are smaller buildings being built. These places of residence are defined in the legislation as a temporary solution, but there is no idea what the permanent one will be (…). There is no provision of housing adapted for people with disabilities in the common environment, (…) personal assistance is perceived as financial assistance for families. The same institutional culture prevails in residential services, and if there is a change there, it is in the more refined forms of violence. (…) The problem is not with the people, but with the model of small group homes, which is deeply inhumane in design.”

Last year, Mr. Dainius Pūras, the then-Special Rapporteur on the right to health, called on the Government of Bulgaria and the European Commission “to immediately stop the building of a large number of smaller institutions for persons with disabilities and older persons and to adhere to its commitment to deinstitutionalisation”.

One year before the UN Special Rapporteur’s intervention, ENIL, CIL Sofia and Validity initiated Court proceedings against the European Commission at the EU General Court in Luxembourg for failing to halt EU investments into institutions for 1,020 disabled people in Bulgaria. Against all of our efforts, the action was rejected as inadmissible, raising serious questions about effective access to justice within the EU.

Amalia Gamio, Vice-Chair of the UN Committee on the Rights of Persons with Disabilities said during the launch event of the report:

“Denial of civil rights of persons with disabilities leads to other forms of structural discrimination. States that continue to invest into segregated practices, such as small homes or special education, are violating both economic and social rights and the Convention itself. They should be making structural transformations through harmonising their legislation with the Convention and investing into independent living in the community.”

Angharad Beckett, Professor of Political Sociology and Social Inclusion and Joint Director of the Centre for Disability Studies, University of Leeds, UK, pointed out in her presentation:

“What is a real home? Reading across research in this area we might conclude that ‘home’ is an affective (emotional), rather than physical or material space. Home is a feeling of belonging. It is a place where we feel safe and secure (have ‘ontological security’). It is somewhere we feel we can and do exert control over space. We expect freedom and security when ‘at home’. It is this sense of control that allows people to engage in intimate, loving relationships. (…) There is substantial evidence that small group homes are not the solution. We see the continuation of institutional practices within this type of residential care, such that we must understand them as ‘institutions’, albeit small scale.”

Although this report gives a detailed overview of the Bulgarian DI process, the implications of it go beyond since group homes are being relied on a policy option elsewhere in Europe and around the world as part of a misguided approach by policy-makers that is focused on downsizing institutions instead of developing services which support genuine inclusion in the community. Also, the EU continues to finance DI processes that are replicating this model across Europe, giving rise to a new and widespread form of disability-based segregation on the continent. Steven Allen, Co-Executive Director of Validity said:

“The Bulgarian model of deinstitutionalisation has often been held up as a beacon of success and an example for the world. This report shows, however, that the reliance on building hundreds of smaller institutions – regardless of their names – is failing to translate into human rights gains for persons with disabilities. This failed model would never have become so widespread without EU investments, and nor would it have been allowed if the EU had demanded compliance with the Convention on the Rights of Persons with Disabilities. Next year, the EU will have its own record under the CRPD reviewed at the United Nations – and it has a lot of explaining to do.”

The report calls on the European Commission to end all public financing of institutionalisation of children and adults with disabilities and calls on the Bulgarian authorities to:

• prevent new placements of persons with disabilities in institutional settings (regardless of size and including all forms of group homes) by immediately adopting a ‘no-admissions’ policy;
• ensure that families having children with disabilities are entitled to sufficient income to prevent institutionalisation of their children, and that they are entitled to and provided with the same level of services as families having children without disabilities;
• halt investing public funds in renovation, reconstruction and expansion of existing institutions and in the creation of new institutional settings, including all types of congregate settings, and all types of ‘group homes’; and
• provide persons with disabilities with meaningful choices about housing options when they move out from different types of institutions.