If you are deprived of YOUR OWN WILL and have to live of SOMEONE’S WILL is the most horrible thing in the world, without breaking the law or committing a crime! You comply constantly with the decisions of experts, social workers and relatives and nobody responses you!
And it’s not about something as big as the state’s energy policy, for example, but about the simplest things, like when to get out of bed, when to go to the toilet, when and how to do any other normal lifestyle things. This may be sound like nonsense for you, but for most people with disabilities in Bulgaria, this is their LIFE (not for these with decisions from TEMC (Territorial Expert Medical Commission)!
Over the last 10 months, therefore, a team of analysts at the Center for Independent Living has examined the impact of disability policies in three areas – quality of assistance services, provision of benefits and technical aids, and deinstitutionalization as a “completed” process (according to governmental reports)The analysis answers the question of how people with disabilities live in Bulgaria – whether they are living of SOMEONES’S WILL or of their OWN FREE WILL and this answer is not positive. But it opens the horizons for change, if we found public support and political will for constructive action. The four reports also provide an answer to another question: why most analyzes are made with donor’s money (private or public) rather than to be allocated from the government‘s budget money. IF THESE REPORTS ARE MADE FAIRLY AND PROFESSIONALLY, THEY TOOK OUT THE DEFECTS IN THE DISABILITY POLICY AND THE NECESSITY OF URGENT CHANGE, THAT COULD LEAD TO EMPOWERMENT OF PERSONS WITH DISABILITIES, TO THEIR REAL INVOLVEMENT AND, ULTIMATELY, TO A NEW STATUS QUO. The current status quo suits many – a government’s official, who hates change because it requires more work beyond the familiar routine; service providers, who take full advantage of existing mechanisms and make THE LIVES OF PEOPLE WITH DISSABILITIES OF THEIR WILL. Finally, nationally represented organizations of and for people with disabilities, who are corrupt with power and subsidies in order not to speak on behalf of disability persons and even to communicate with them!
The main benefits for people with disabilities are the pension – which is a social security right – and the allowance for an assistance when is lost over 90% of working capacity, approved by TEMC’s decision. This is equals to nearly BGN 86.36 per month (75% of the social pension for old age, equals to BGN 115.15) and hardly helps anyone to hire an assistant, if they really need such help. It absorbs serious public resources, given to 200-250,000 disabled people, without much benefit to them, but with a small income for the family’s budget. The same function also has the monthly integration allowance provided for seven items – for transport, education, medicines and diet, for communication (in other words, for phone, internet and so on), for access to information (given to people with sensory disability), municipal housing rental, spa therapy and rehabilitation. The total amount does not exceed BGN 45 per person per month if all possible disabilities are present. In 2015, this acquisition has distributed to over 500,000 people and it costs the state’s budget over BGN 138 million. At the same time, the real inclusion of people with disabilities requires assessable homes, assessable transport, personal assistance and modern technical aids. More than BGN 54 million was spent on technical aids of extremely outdated products with miserably low price. Only three persons received one-time support (amount of BGN 600!) for housing adaptation And only six persons received support for assessable car’s adaptation, after passing some income conditions, which make them unprivileged.
The assistant’s services are provided on a program-project basis, from project to project, but worth millions of levs that have passed through the municipalities. More than 18 thousand people with disabilities have received “support” from assistants – under the national program “Assistants for people with disabilities” (1000 people against BGN 6 million in 2014) and three programs funded by the European Union ( “Alternatives”, “Support for a Dignified Life” and “Assistance at Home”), which covered nearly 43 thousand people for BGN 225 million.
The assistant’s services programs operating in 2014
|National program “Assistants for people with disabilities”||Financing from the Government|
|“Alternatives”||Operation program “Human resource’s development”||BGN 12 733 165,23||12 236|
|“Support for a Dignified Life”||Operation program “Human resource’s development”||BGN 171 006 924,00||16 136|
|“Assistance at Home”||Operation program “Human resource’s development”||BGN 32 475 400,44||14 075|
And the highest priority of the state – the removal of children and elderly people with disabilities from specialized institutions – was just to close 150 large homes and replaced them with more than 200 small group homes without any difference in quality of life, compared to large social institutions: the same institutional care and insensitive staff, assigned to care for the occupants of these “resident-type community services”, but not to support, and to control their life.
In summary, we can say that disability policies in Bulgaria are archaic, oppressive and expensive. To change the lives of people with disabilities is necessary to:
- Eliminate the TEMC as a tool for disability’s assessment.
- Adopt a new law on disabilities.
- Adopt a Law on Personal Assistance, which draft copy has been maturing for six years in the offices of deputies and senior government’s officials.
- Change the participation system of people with disabilities in the political process.
The full text of the reports will be published on the website of the CIL
The research was conducted under Project №297 / 26.05.2015 – “Life of own will or of somebody else’s will- Advocacy for human rights of people with disabilities”, funded by the Program for Support of Non-Governmental Organizations in Bulgaria under the Financial Mechanism of the European Economic Area