Tuesday, June 01, 2010

Bulgarian children with cerebral palsy to be deprived of therapy

Today is June 1, marked in many countries as Children's Day. It is devoted to all children - not only to those who win A grades and sport races without much effort and allow Mommy to make a career, but also to children with disabilities. So little is done for them in Bulgaria, and even that little is taken away when government wants to tighten its budget. The Sanatorium (therapy facility) for children with cerebral palsy in the town of Bankya near Sofia is being closed down. Below I am translating a letter of a mother published by two other bloggers - Lyd and Yana. The information in it is confirmed also by the Darina's memorial site and by a group of parents and activists starting a petition to save the facility.
You can sign the petition here. The top line (field in grey) is for your full name. Next two lines are for your city and country. The large field is for your comment and is optional. Below you must write your e-mail and the anti-spam code and press the button "подпиши" (sign). You will soon receive an e-mail with a link you must click to confirm your signature. It is too complicated indeed, and I doubt how efficient such petitions are. I advise you to do whatever else comes to your mind - give publicity to the case, write directly to Bulgarian and EU institutions etc. Because nothing ever improves in Bulgaria without foreign pressure.

Now, the letter of Daniela Peneva:

"Dear readers, I am a mother whose son has cerebral palsy. The only treatment for him is the physical and occupational therapy he has received for 6 years at the Children's Sanatorium (Therapy facility) in the town of Bankya. Under the care of the professionals working there my son already can walk on his own and becomes more independent every day. And he is not the only case - the therapy at the Bankya Sanatorium has helped many children to improve and start walking.
Unfortunately, the Sanatorium will no longer be a place for therapy of children. It has been the only facility in Bulgaria for therapy of children with heart problems. And the children with other problems will be redirected to other facilities where the therapy is of lower quality and gives poorer results. Therefore, closing down the Bankya facility is a clear violation of the rights of our children under national law and the UN Convention...
8 years ago, the Bankya Sanatorium was thoroughly renovated by a German foundation (Kaiser's Fund). Appropriate equipment for children's therapy was bought... The problems began 4 years ago when the Sanatorium was closed for first time during the winter (presumably to spare the money needed for heating - M.M.). Unheated and unused, it began to deteriorate. This situation continued for 3 years. Then, last year the health minister changed the affiliation of the Sanatorium... Two months later, in October (2009), the Sanatorium was closed and the personnel was given unpaid leave until June 1, 2010. We, the children's parents, all awaited and planned the therapy for June.
On April 16, 2010 I called the director responsible for therapy facilities and asked him when the Sanatorium would be reopened so that we could enlist our children for therapy. They answered me that it is economic crisis now and the Sanatorium would not be a facility for treating children anymore. There said that there are two Sanatoria for children in Bulgaria (the other one is in the town of Momin Prohod) and it is impossible to sustain both because there is no profit from the children, on the contrary - there is loss (emphasis mine - M.M.) Because of the long period when the Sanatorium was closed, some professionals have left and have not been replaced. The officials did not tell me what purpose the building would serve in the future, but said that surely it would no longer be used for children's therapy...
Because my son has cerebral palsy and not a heart problem, there are still some facilities where he can receive treatment and somebody would say that I should bring him there. We have tried other facilities but no one was as good as the Bankya Sanatorium. Professionals there have real attitude to the children, their parents and the problems. They worked in order to help, and achieved results. Their therapy spared surgery to some children - 2 operations to my son alone. Also, they trained parents how to work with their children at home, because children need daily therapy and the Health Fund pays only for 10 days.
These are children, human beings. We have not abandoned them in care homes, although this has been suggested to many of us. On the contrary, we try to make our children as independent as possible... For that purpose, we need high-quality therapy and we insist on it!
The building of the Sanatorium has been donated under the condition that it would be used for children's therapy.
We, the parents of children treated at the Bankya Sanatorium and several disability rights organizations, are starting a campaign to save this therapy facility. We are asking for your support! Help the children!"

Update from June 3: Yana reports that the Sanatorium will be reopened these days but only for several months because it will not be heated. Guess how many therapists will remain on "payroll" to survive with 3-4 monthly salaries per year. The other bad news is that no contract with the Health Fund has been signed for 2010, which means that families will have to pay all therapies - 40-50 leva (EUR 20-25) per day. I call this adding insult to injury, because my net salary, which is above the average for Bulgaria, is about EUR 450, and most of the mothers of these disabled children stay at home in order to care for them. Forcing them to pay for therapy is a crime. My guess is that authorities are pretending to keep the Sanatorium open, maybe because of the outcry, and will close it the minute public opinion looks somewhere else. And meanwhile they are imposing outrageous conditions on families of children treated at the Sanatorium, and on the personnel.

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