Thursday, August 14, 2008

Advocating for institutionalized disabled Bulgarian children

Last year, when I posted about Bulgaria's abandoned children, a commenter wrote, "I am the mother of 2 Roma children that I adopted from Bulgarian orphanages 10 years ago. My daughter was 7 years old. When we were in Bulgaria visiting our daughter we found out that she had a twin. Further investigation let us to find out that the twin was still alive but was "severely affected." We asked for a medical evaluation and we were denied our request. We asked to visit her and we were told we would not be permitted to visit... Every time I look at my daughter I wonder, what happened to this girl named Sofka. She would be 17 now... Maybe someday we will find out what happened to her." I reposted the comment last November under the title Does anybody know what happened to Sofka.
Happily, a regional child protection agency finally did its job and informed the adoptive parents of Sofka's sister (named Penka) about Sofka's whereabouts. She was in the Care home for children and adolescents with mental retardation in the village of Krushari, North-East Bulgaria. My Apr. 21 post where I thought about the future of institutionalized disabled children as they reach adulthood was also inspired by Sofka's fate (though didn't mention her name).
In July, the US family that had adopted Penka visited Sofka in Krushari. Then the mother sent a new comment which I am reposting here, with her permission.

"Our journey to find Sofka and be united with her is over. We just returned from Bulgaria yesterday. It was a life changing experience and I want to share with all of you that Sophie is doing much better than we anticipated. In fact Sofka now WALKS!!! We got to spend a few hours with her and she appeared to be in pretty good health though very small. We observed that she seems to have the capability to learn and may not be as cognitively impaired as we had feared. So doesn't speak BUT she definately understands her surroundings and given that she has just recently learned to walk I feel that she may be capable of much more.
The director of this institution has only been in his position for 6 months and I will tell you that he appeared to be a very sincere man who wants to help these kids. We specifically asked him what his needs are since it is our intention to provide as much support as we can. He cited that his most urgent need was a physical therapist. He said that it is hard to attract that kind of skill set to this village. The pay is not too great. We promised to do what we could to help him find someone and if we need to we would suppliment what they could pay. (A therapist has just been appointed - M.M.) We are also going to provide Sofka with a walker to aid in her progress with walking. When she is done with it they will give it to another child. He indicated to me that a Dutch group has provided their caregivers with so training and the woman who works with Sofka works one-on-one with her. She was very attached to this woman. It was obvious that this method was working since she has just recently started to walk.
We were able to interact with many of the other kids there. They were very friendly and they all appeared to be healthy. My 13 yo son was with us and they LOVED hanging with him! He loved meeting them to and wants to come back next year and spend more time with them (I suggested he do Karaoki with them). The care givers I met were all very nice and they all wanted to see pictures of Penka, Sofka's sister.
In what I felt was a real show of trust the director asked us if we were interested in seeing the area where the really severe, bedridden kids were. We did, even my son went in to the newer building. It was not easy but there was no foul smell and the areas were clean. The kids were thin and he said that he had added another meal (4 meals) to see if that would help them gain weight. He also cited that he only has 3 caregivers in this area for 40 kids but he is looking to triple that in the very near future.
We are now setting up a means to send financial support to Krushari. My son is taking on fund raising as his Bar Mitzvah project.
Next summer we will return with Penka. She is very excited to meet her sister and when she saw the pictures of her she said "Mom we are so cute arent we?"
As I said, it was life changing for me to go there. I feel that they are doing what they can to help these kids. Anyone who can go there and offer the skill sets that they need should contact me at mbaeck@verizondotnet."

I have stated before that I am for deinstitutionalization of disabled children and adults (and also of non-disabled abandoned children). However, institutions are still the reality for Sofka and many others and I would wish to express my admiration of those employees who try their best to make this reality as good as it, and of devoted community members such as the author of the above message.
Bulgarian readers can also read here about two girls from the Krushari care home who are integrated in 6th grade of the local school.

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