The Personal Assistance (PA) scheme, which serves to compensate the deficit caused by impairment, is a social practice in many European countries. The Center for Independent Living (CIL), as an organisation with extensive international connections, explored the existing mechanisms in Europe and US and run a pilot project back in 2002 with 30 disabled people in Sofia. External donor funds (NOVIB – Dutch Organisation for International Development) helped the Bulgarian users to recruit and hire their assistants, manage the assistance time and quality of services and change their assistants, when they found this necessary. Along with administering the scheme, CIL ran a wide public campaign to promote the mechanism itself and the results achieved. Ever since then, all government cabinets have introduced different assistance services but none of them supports – in any way – the social inclusion of disabled people by allowing individual assessment, empowerment of the beneficiaries and control of the service provided to its users. The lack of real support for independent living (IL) made several organisations of disabled people in Sofia, Vidin, Bourgas and Stara Zagora look for a sustainable solution on the national level, which will meet the needs of over 10000 severely disabled people who are determined to live independently and have control over their daily activities. Results of this meeting were shared with the leadership of ULOBA – the disability organisation which initiated the PA scheme in Norway and hosted a visit of a small group of Bulgarian disabled people in 2008. Actually this trip to Drammen, Norway had a serious effect on the Bulgarian visitors and created a strong determination in all of them to advocate for a legal regulation of the PAs in Bulgaria and ULOBA activists committed to become partners in such project.
The main goal of the project was to have disabled people exercise their human rights through access to personal assistance and independent living in the communities they choose. Its achievement was impossible without (1) raising awareness among disabled people and their organisations of the PA scheme as a tool for equal opportunities and policy application of the social model of disabilities; (2) having disabled people empowered to stand for their human rights, and particularly the right to live independently through access to PA, and last but not least (3) raising awareness among the governmental bodies responsible for social policies and individual policy makers about the PA scheme as an alternative to the existing services and a tool for empowerment and participation of disabled people in the communities.
Thus, we started the project with a set of research activities. The research methodology came first: it was based on the values and principles of IL, containing both quantitative and qualitative elements (statistical data and personal stories in structured interviews) with a purpose to provide for reliable results that could be used in the advocacy activities to come. All assistance services were subjected to evaluation and the findings showed that the variety of arrangements on paper did not necessarily provide real freedom of choice for the disabled people. All generated documents were uploaded on the project web-site (www.lichna-pomosht.org) as well as on the web-sites of the Bulgarian partners. In addition, most of the MPs, political party leaders, decision-makers and other stakeholders received them on a memory stick. Dozens of meetings were held with government officials from the relevant ministry and the Social Welfare Agency, with MPs and other decision makers. Partners from Bourgas, Vidin and Stara Zagora met hundreds of disabled people and helped professionals to present the evaluation results and the major difference between the existing disability services and the PA scheme as a tool for social empowerment and inclusion of disabled people. The awareness campaign also included numerous articles on the subject published by disability organisations in other European countries and translated into Bulgarian. The exchange visits between ULOBA and the Bulgarian partners left deep memories on both sides along with valuable experience and lessons learnt: Bulgarians in Oslo and Drammen found out that even in 2010 and despite the achievements of the Norwegian social policies, Norwegian disabled citizens continue to be politically active and demanding from their government to be treated as equal to the rest of the population; Norwegians tried “to vote” in the parliamentary elections in Bulgaria in 2009 and quickly came to the conclusion that the Bulgarian political process is not accessible for disabled people. Everyone realised that the human rights battle is not over yet, anywhere in the world, especially when it comes to attitudes, prejudices and vested interests.
In the three-month’ extension of the project – September through November 2010 – additional reports were finalised and promoted: financial estimates were prepared of the PA Law (which was itself drafted with extra funding raised as a result of work on the project), Disability Policy Review and Review of the Calls for Proposals announced under the Human Resource Development Programme (operating with EU Structural Funs). All research results show that the current disability policies in Bulgaria are too “generous” in terms of the public budget and meager for the citizens – all because of poor targeting and lousy implementation practices which ignore the individual needs of disabled people and place them in isolation.
As a result of all activities under the project, politicians, public administration and disabled people became more familiar with the idea of IL, but this did not affect the policies. Despite the weaknesses of the existing assistance services exposed in the research, the Government did not get the courage to change the approach and give a chance to disabled Bulgarians who wanted to assume responsibility for their lives by managing the services they receive. The growing IL Movement, however, managed to utilise the project results and raised extra funding to draft a Bulgarian PA Law in a wide consultative process, to organise two marches in the city of Sofia and show an impressive performance during the Freedom Drive march in Strasbourg (2009). All actions of the Bulgarian disabled citizens are dedicated to the demand for legal regulations of the PA scheme, which has to replace the limited provision of services on a programme-project basis. The Government – through the Ministry of Labour and Social Policy – makes clumsy efforts to modernize the existing services and bring them closer to the IL concept, demonstrates political will to introduce “personal budgets” but the low administrative capacity of its agencies prevents it from offering the “real thing”, which will guarantee that disabled people will be allowed to enjoy life in the communities of their own choice. Some light in the tunnel could be seen at the end of 2010 when the Minister of Labour and Social Policy, Totyu Mladenov, officially invited CIL and the rest of the Bulgarian project partners to participate in a task force on the Draft PA Law. This is an encouraging start, which would have never happened without the efforts of all project participants and the assistance of the NGO Support Fund 2008 – 2010 under the European Economic Area Financial Mechanism.
Contact information
Kapka Panayotova
60 Ekzarh Yosif Str., 1000 Sofia, Bulgaria
Tel.: ++359 2 983 25 15
Cell Phone: ++359 888 504 325
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