Anna Kuznetsova about supporting children with rare diseases and the relationship of the family and the state

the Russian President has proposed to increase income tax on income over 5 million per year and direct those funds to treat children with rare diseases. About his attitude to this decision, and the amendments to the Constitution in an interview to “Russia 24” said the presidential Commissioner for children’s rights Anna Kuznetsova.

– Anna, discussing amendments, I would like to touch on one of the latest news: the amendment says that children are a major priority in the state policy of Russia, and yesterday the President made another step in confirmation of this, and proposed to raise income tax on income over 5 million per year and direct those funds to treat children with rare diseases. What do you think about this?

This is a good confirmation of our lives change not the words and language in themselves, but real action. But it is important that there is a Foundation and the base that we currently introduce a number of amendments. With regard to this decision on children with orphan diseases is a long-awaited decision. Thousands of parents turned, looking for the opportunity to provide medicines to their children. Now the opportunity. Approximately 60 billion annually, will focus on the treatment of children with rare diseases. Their number over the past five years has increased by 60 percent. This is partly due to better diagnosis, but it imposes additional obligations, and, of course, need resources for their implementation. So many questions, many problems. The regions can not cope with a huge amount of funding to children with orphan diseases, and this, of course, the answer.

And another point again: the President said and instructed to make the mechanism of getting the money direct children and their parents in a transparent and non-bureaucratic. It is very important that this be done, because it is also an integral part of the efficiencyand and spending, and, most importantly, that those decisions felt by our children.

– Another point on the Constitution: “the State should create conditions conducive to the comprehensive spiritual, moral, intellectual and physical development of children”. In your opinion, what exactly needs to be done? What actions are necessary to the authorities to implement this provision of the basic law?

– the Words are wide enough, but the actions, in fact, very specific. And some of them have already done, for example, in the first reading adopted the bill, which was introduced by the President, about education. This, of course, the starting point. That has gone a little by the wayside lately as we have repeatedly said — our verification service educational programs revealed significant violations. About 16 percent of today’s educational programs comply with regulations 16 percent! How large is the demand for these educational programs.

So, with the thesis about modernization, we addressed repeatedly. Now at the highest level, these decisions have been taken and done these steps.

of Course, family values at school. We talked about that, too, and we know that in the plan “of the 10th anniversary of childhood” includes activities related to teaching family values in educational organizations. It may modules to enter educational programs.

And, of course, directly assist families. About this a lot lately said. This particular case, a particular support, financial support including the creation of conditions for development and strengthening the family – all this is embodied in the actual steps, should be documented. But, most importantly, people could use this aid to.

– We are talking about family, and the Constitution prescribes that “marriage is the Union of man and woman.” How do you think it is important to provide this clarification in the basic law?

– If this question was asked 20 years ago probably the answer could not, because such questions do not ask yourself. But, unfortunately, we now have to think about our children, and if today, for many of these values are immutable, the traditional values on which today focused our state policy and the position of many citizens of our country, then seeing the transborder nature of this world, we understand that our children need to protect. And we understand that the Constitution is written not for one year but for decades. So I want to lay the Foundation that, in particular, will protect our children from any strain, that may harm their families.

– what, in your opinion, should be built relations between the state and family? And what role should the state play in shaping and supporting the family? As it is now and how it should happen in the future?

– actually, it’s very simple: what will happen to the family from the state? The family is waiting for support. She lives her way of life, its Charter, and the state conditions are necessary in order for the family to develop normally, to be able to raise, educate their children, give them education, which he considers necessary for their development – this is necessary today family. And we know that in this direction is the right move, and the relationship to build family and state properly.

the service manuals, which are now in the direction of the family stand out — for the period of quarantine measures, we see a whole range of support measures to different categories of families: unemployed, with children of different ages, which could be in different difficult conditions during this time. In this direction and need to move. Of course, you need to be very careful. If the government suddenly begins to substitute family, substitute is not in a very correct sense of the word, we need to think about the risks. Therefore, I believe that the amendments that are being created today in the Constitution, must take into account these aspects, and they prescribe a range of measures. Yes, the orphans who need fully to help and to provide their life conditions, if we are talking about family, there is a need to help her, but not to interfere, not to substitute, not to violate the boundaries of the family. So here, if we manage to walk this fine line, this is what awaits today, the family from the state.

– Anna what importance do you personally attach amendments to the Constitution?

– First of all, as a mother: what is the amendment about additional guarantees, expanding the family’s obligations towards me as a mother or my family? Is the possibility of additional rights. And to demand their implementation today.

We can say: “And that, without further amendment to the Constitution that someone interfered to help the family?”. Actually, of course not. You can without any documents to borrow and to help the family, not having any codes, which is now registered, family, criminal, administrative. You can just pick up and do good things. But the obligation to impose only the specific wording, and here they are.

Second: as authorized by the rights of the child — for us, the Institute is an additional resource that we can rely on, protecting the rights of children. Reform of the guardianship – heavy theme. She and the whole year went to the appropriate specialized agencies, to identify irregularities. Unfortunately, the steps are not as intense as we would like, and in this direction much remains to be done. Therefore, we expect that these amendments, in particular, will contribute to more rapid implementation of the ideas we have today.