Translated material
Yulia is the mother of a disabled person
I met her on the set of the “Right to Vote” program. Julia stood next to me. A beautiful woman, tall, in an amazing beige dress. Mother of a disabled child. From her at the program, I first heard those accusations against employees of the Department of Social Protection of the Population, which she writes about in her letter. It happens very rarely that disabled people or mothers of disabled children blame someone or demand something. We usually ask with varying degrees of humiliation. People are powerless, but officials are the opposite. Omnipotent. And I have the usual desire to “soften”.
Julia is absolutely special. She is ready to fight for what is due by law. Don't ask, but fight. Her son is 17 years old, and the obnoxious mother Kositsina, mentioned in the transcript, with whom the department staff cannot work, has three children with cerebral palsy. In the same family. How this happened is a different story.
Also on the program was an incredibly tired mother of two with cerebral palsy. This is what they affectionately call their special children. Today is Yulia's birthday. This is accidental, this is not a gift, you understand. Help her! If there are journalists among you, write about cerebral palsy. I have Yulin's phone number. Or at least repost her letter.
Yesterday a line was drawn under the period of illusions and a different life began. It is common for all of us when, meeting fierce resistance from officials in helping people with disabilities - the most difficult categories of citizens in the country, we continue to wait and hope for a miracle. What if the boss or the boss of his boss, or maybe the Mayor of the city, who is the boss of them all, at least hears out of the corner of his ear about the endless lawlessness that the Moscow Department of Social Protection is doing! So, these are not my illusions.
My illusions until yesterday were different. The DSZN has a Council of Parents with Disabled Children. I am the mother of a child with cerebral palsy. My son is 17 years old. Which means we were born in 1994. Knowledgeable people remember how it was. On December 5, maternity hospital No. 5 was opened after a “wash.” They washed him, but they didn’t bring blankets for the maternity ward. I gave birth under a baby flannelette blanket. A son was born, a very handsome boy with an adult face. My son’s head was broken two hours after birth, apparently when they were shifting him. An old nurse quietly told me about this upon discharge. And on the night of December 6, a “children’s doctor” came to me and said: “Mommy, brace yourself, your boy is very weak, well, you are young, you will give birth.” Then there was a month in hospital No. 13. And there everything was divided into floors. The first one was an intensive care unit for premature babies. It was headed by a very interesting guy, an Armenian. He saved my son. Attentive, with a sense of humor, capable of the right and kind words at the right moment.
A year and three weeks later, on December 27, 1995, my son, in Moscow Hospital No. 18, was diagnosed with cerebral palsy. To talk about the grace with which they announced your child’s incurable disease is a waste of time, choosing swear words. Then came a period of endless rehabilitation. The word “treatment” is missing in this disease. If you want a normal massage therapist, pay, if you need a repeat course, pay. I don’t want to waste time, everyone who has encountered free healthcare knows its price. 17 years have passed. More and more children are being born with cerebral palsy.
For those who have not tried, I will say that in 2012 it is just as impossible to receive real help from the Social Security Service, as provided by law, as in 1995. And the budgets allocated for this area are fabulous. So, for example, 100,000,000 rubles were allocated for the rehabilitation program for children with cerebral palsy in Budapest at the Petyo Institute (let me explain, this is a very popular program because it works and there are good results) in 2011, this is the figure from the official report of the Department for 2011. This area is dealt with by Tatyana Aleksandrovna Potyaeva, the first deputy head of the DSZN of Moscow, Vladimir Arshakovich Petrosyan. Service - what a word, they provide us with a service! - 165 families received (a child with an accompanying person twice a year) - this is from the words of the same Potyaeva. Divide one by the other, we get 303,000 rubles for one trip per year.
And now the reality: http://forum.detiangeli.ru/index.php?topic=1671.435 For those who paid for the trip on their own, a course of the same duration at the Petyo Institute will cost 140,000 rubles, that is, half the price. But I gave as an example only one of many programs!
Mr. Sobyanin! If you haven’t heard about it until now, now you have. All letters from parents and children with disabilities to you and to your deputy for the social sphere, Olga Yuryevna Golodets, received a response signed by the head of the Department for Social Integration of Persons with Disabilities, Irina Nikolaevna Kalinichenko or the aforementioned Tatyana Aleksandrovna Potyaeva.
And I started my letter with the illusions that remained with me, and so, mine concerned the role of the Parents Council at the Children's Health Service. The Regulations on the Council contain all the points on which this Council can actually demand decisions from all departments of Moscow. But the Council, as it turned out, was not created for this. This is a buffer between parents and the department. He does not demand anything, moreover, he does not even formulate tasks for himself, complete ENCRYPTION OF THE EMPTINESS! It is headed by Potyaeva’s friend, Olga Aleksandrovna Karpishina. I have at my disposal a transcript of one of the meetings. Let me quote a few phrases from it:
Agendas
1. The reasons for the current conflict situation in the Council and everyone’s vision of ways out of it
2. Miscellaneous.
Karpishina: “I think that we should trust and support each other. However, when other candidates were nominated to participate in the Coordination Council, this caused such negativity. I believe that we are all in equal situations, we should all learn to speak. Therefore, I urge everyone to stop fighting. We must unite, otherwise we will not defeat mothers like E. Kositsyna and others who are dissatisfied with the work of the Council. There are many complaints about our Council both in Blagovest and in Petya. In such a situation, we need to lend each other a shoulder, and not betray each other.”
Once again I want to ask Karpishina and the others, do you understand why you have gathered? What's the goal? For what? You are mired in squabbles, hatred of each other and enmity! Aren’t you afraid to look into the eyes of those whose interests you “defend”? You are my last illusion. I will make every effort to re-elect Karpishina from this post; among the parents of the Council, there are worthy and competent people, they know first-hand about the terrible problems that accompany families with disabled people through life, they formulate it competently and have a conscience. Old-fashioned? Be patient!
I will post all the materials on http://sovet-roditeley.ru/ .
Many people say to me: “Julia, why are you surprised, it’s always been like this with us!” I would like to answer this with an excerpt from the poem “Morning” by Yakov Polonsky:
Oh, in response to nature
Smile from time to time
Doomed to sorrow
Human genius!
Smile at nature!
Believe the omen!
There is no end to striving - There is an end to suffering!