The Project “Turning Words into Action” from the perspective of Dennitsa Georgieva – a parent of a child visiting Karim Dom
A working group for the project “Turning Words into Action” gathered for the first time in London on November 24th 2011, under the leadership of Professor Sheila Baroness Hollins. The meeting was held in the Parliament and was attended by all 10 of the members: Professor Sheila Baroness Hollins – the Chair, Dr. Elena Shevkun – representative of WHO (World Health Organization) – Regional office for Europe, Dr. David Towell – the host of the meeting, Dr. Apostol Apostolov – Representative of Karin Dom Foundation, a project partner from Bulgaria, Ms. Melita Murko – coordinator of the project - involved as a coordinator in the “Better Health Better Life” initiative from its initiation through to the endorsement of the Declaration at the Bucharest conference, Ines Bulic – Regional Teams Manager at the European Network on Independent Living, Petra Kacirkova – Lumos Country Representative - Czech Republic, Laure Trebosc - Lumos Programme Development Coordinator, Ms.Georgette Mulheir - Project Manager and CEO of Lumos, and I – Dennitsa Georgieva - a Representative of parents community, with the exception of the representative of Serbia. Also in attendance: Gulnara Burhanova - Project coordinator and child Participation officer at Lumos, Nolan Quigley – Advocacy and Campaigns Manager at Lumos, and Dr. Roger Banks - External Evaluator.
The work of the commission passed in a very flexible form. The initial presentation required pairing up and giving a brief presentation of the partners. After that three working groups were formed:
I was included with the first group along with Georgette Mulheir, Petra Kacirkova, Gulnara Buthanova, and David Towell. We focused on the role of children in the project and the support to develop children as youth self-advocates. We clarified concepts such as self-advocacy as well as discussed the problems and obstacles in preparing children for self-advocacy. It is known that there is no tradition in this area in Bulgaria, as well as in Serbia and the Czech Republic that are included in the focus of the project.
My opinion, that I expressed, is that this is a long process that will exceed the time allowed for completion of the project “Turning Words into Action”. Furthermore, some characteristics of children - for example children with autism - would be more complicated with their presence in groups.
During the meeting was discussed specific ways to prepare children, the role of parents, specialist - psychologists, and others who support the work of the parents in this regard.
Petra Kacirko spoke about building self-advocates among children from institutions and the sensitivity which must be used when addressing these children so as to not cause moral harm. The results of the group of children with disabilities will be compared with results from the group of children without disabilities from institutions, for qualitative analysis.
The participants in the second working group were: Dr.Elena Shevkun, Dr.Apostol Apostolov, Ms.Melita Murko, Ms.Ines Bulic, and Professor Sheila Baroness Hollins. This group discussed concrete actions to implement the project.
The participants in the third working group were: Laure Trebosc, Dr.Roger Banks and Nolan Quigley. They discussed ways to evaluate the implementation of the project. The views of each one were recorded, summaries were made, and details will probably be published on the Foundation Lumos website.
Also in discussion were issues of national coordinators, attracting additional specialist, and updating the project budget. Some committee members left with more questions than they had at the beginning. It is not yet clear how the project itself will be conducted, and probably will not be until a coorinator has been elected.
Ultimately what I think is important is:
1) Declaration of children and youth with disabilities and their families, which is a result from the project by WHO – Europe, “Better Health, Better Life”. This declaration fills the gaps of the three conventions (children’s rights, the rights of people with disabilities, and human rights) which is signed by the Bulgarian government.
2) “Turning words into action” is a project of Lumos, which is a continuation of the “Better Health, Better Life” project and an implementation and enforcement of the declaration and monitoring the results of its application.
My role as a parent will be:
1) To bring to the attention of a maximum number of families with children and youth with disabilities, the presence of such a declaration, the rights that it gives to the target group, and the 10 main priorities in the declaration
2) To support the process of building self-advocates.
My question is:
To what extent the declaration will have effect in the absence of ratification of the Convention on the Rights of Persons with Disabilities and unaccepted Convention on Human Rights?