Who we are
Our organization was founded in 2011 by the parents of children with central paralysis. We are the only civil organization in Hungary who focuses on and supports centrally paralyzed children and their families.
In one hand we collect donations to help the families in need and to help the children get treatments abroad. On the other hand we are also an interest group advocating for an efficient and appropriate care system so the children and the families could live “barrier-free”. We also organize activities and programs and try to build up a network to help parents.
We believe it is important to work together with other civil organizations and with the relevant Departments and Ministries.
How we live
In Hungary there is approximately 450 thousand people living with some kind of disability, around 10%, 45 thousand, of them are children. Since the care system does not work efficiently the families raising children with disabilities does not get enough information, barriers and inequalities persist.
While in the capital, in Budapest, there are possibilities for appropriate schools and it’s easy to have access to the needed medical care and many development treatments, this is not true for the countryside, where in many cases even the minimal medical requirements are not met.
Especially the more severely disabled children’s families are in a difficult situation. Since they are not getting enough financial support most of them become impoverished and become excluded from society.
This is the reason why many parents have no other choice than to put their children into institutions, which are also lacking in quality.
What we do
We participated in the organization in the first Rehab Critical Mass in Hungary on the 19th of October 2014. In the name of Equality, Accessibility, Solidarity and Unity we marched to Erzsébet square, which is located in the middle of the city center. Here many sensitizing and cultural program waited for the few hundreds of participants.
On the 3rd of December 2014 – the World Day for People with Disabilities – for our association’s call a clothing shop, GAS, installed special show-windows in their shops, presenting their regular dummies as disabled people.
In 2015 May, for Mother’s Day we announced a contest, in which we asked mothers raising special children to write about their experiences, about motherhood. From the incoming essays we made a free publication “We were born to love”. Because of the high interest we had to reprint several times. We also sent the publication to several leading politician and Secretary of State, who thanked us in letters for the high quality essays.
Our president, Anett Csordás, also gave a speech at Science Unviersity of Eötvös Lóránd at the Faculty of Special Education to raise awareness to the situation of disabled people and most particularly to people with CP.
On the 9th of January 2015, we organized the first CP Days, to share knowledge about CP. There was more than a hundred participants, those concerned and experts, who arrived from all around the country. We organized the second one in April for the high interest, which was really successful and contributed to the formation of a starting community where we are thinking together, concerned citizens and the experts.
During this spring through external funding we managed to organize a 120 hour long training for concerned parents who undertake to establish parental communities in their cities, towns, villages. These communities should share information within themselves and with each other, support their members mentally and help to form an appropriate care system at their residence.
We are also participating in the project of another civil organization, Kézenfogva Alapítvány, where we are trying to build up an information point network through the country. We are contributing to their databases and help them optimize their research engine before it is released to the public.
We are actively involved in lobbying for a better solution for the care allowance with other similar organizations. On the 29th of January 2015 we had a round table discussion about the topic where concerned parents, organizations and experts participated and shared their ideas, views and knowledge and we tries to form a common standpoint and strategy.
On the 5th of May 2015 Anett Csordás, the president of our association, participated in the National Disability Council. She gave a speech on the issue of the care allowance, highlighting that the parents who are caring for their children or someone caring for their close relatives only gets 47 000 Ft (around 180-190 USD) per month, to which the special family allowance is 63 000 Ft (around 250 USD) is not nearly enough to cover the necessary living expenses for two people, and this leads to impoverishment of these families.
She asked the government to work out a proposal so these people would be recognized as employed since the caring for their children and relatives is a 24 hour service. Her proposal was accepted positively, so our organization continued with writing letters about this proposal to the Secretary of State for Social Issues and to the Secretary of State for Social Inclusion.