Russia (bbabo.net), - On February 10, in Moscow, experts, officials, human rights activists and representatives of public organizations will announce the start of the Year of Awareness on Early Assistance to Families with Disabled Children. What is Early Assistance? How will she help moms and dads who found out that their child will be born with pathologies? These questions were answered by the Commissioner for Children's Rights Maria Lvova-Belova.
Maria Alekseevna, is early help about medical ethics and philanthropy when reporting a diagnosis?
Maria Lvova-Belova: Including, and about this. The mother-to-be is screened and finds out that she has a child, possibly with Down syndrome. Mom is under stress, she does not understand what happened, why it is with her, pressure from relatives, dad can put before the choice "either me or the child" or leaves the family. This is where early assistance to the family is needed so that the family does not turn away from the child and mother, but sees its resource and prospects, sees the possibilities of support. I very often communicated with children with various forms of disability. These were children, both from orphanages and from families. I saw the consequences of what the child faced and what was not worked out at an early age. Early assistance is a whole range of support, and medical assistance, both social and psychological and pedagogical, is assistance not only to the child, but to the whole family and its environment.
And yet, I will return to doctoral correctness, because it is the doctor of the antenatal clinic who turns out to be the expert who influences the fate of the child.
Maria Lvova-Belova: Not really, there are many examples when mothers do not refuse such children. Yes, medical ethics are important. A protocol for reporting a diagnosis, which is now being implemented by the Ministry of Health and actively supported by the public, and by me. For example, out of habit, you can say - "you have a child - with Down syndrome, will we have an abortion?", Or you can do it differently - "Mommy, you have a child with Down syndrome, but these children today can grow up quite safely in our society , there are various services, organizations that support, communities of parents raising such children ... ". And it will be another story, because mom understands that there are difficulties, but there is also support. In general, this is about our personal responsibility and our vision - how to overcome. To do this, you need to see the whole picture, and not just the negative part of it.
Who can provide this early help?
Maria Lvova-Belova: Of course, it should be coordinated by one department, for example, the Ministry of Labor and Social Protection. But at the same time, to combine different types of assistance from various organizations - state and public, educational, medical, etc. I recently returned from Nizhny Novgorod, they have a unique experience in implementing a system of comprehensive and continuous support for children with autism spectrum disorders and other mental disorders - the Mental Health project. The work is aimed at the maximum development of minors, adaptation and integration into society, reducing the severity of disability, strengthening mental and physical health, increasing the availability of education and employment. The Center for Social Development coordinates the work - they identify, provide assistance and draw up an individual rehabilitation plan. How do we do it most of the time? Parents themselves are looking for someone who can help. But everything is so fragmented that it takes a lot of time and nerves to search for information. And this opportunity to build an individual plan for the rehabilitation of the family and the child is the main task of early assistance. Such programs are now beginning to develop in many regions. With the year of informing, we designate our priority, our main task. Investment at the start will give us results in the future. Early help is also the prevention of abandonment of such children. Now in orphanages, a significant percentage of children from zero to four years old are children with disabilities who were abandoned by their parents.
Which parents leave children?
Maria Lvova-Belova: The saddest thing is that quite prosperous families often leave. During one of the trips to the region, I talked with some of them, I was interested in what influenced their difficult decision? Someone was pressured in the maternity hospital - “why do you need such a child”, the other part said “we live in the countryside, we have no infrastructure and we don’t understand what to do with it”, there were still options “how am I alone with this child - the husband left, you need to work, feed the children. And here the question of individual accompaniment and support arises, so that the family understands that it will not be left alone with this problem, and this will help to reduce the number of children who are sent to orphanages. By the way, after some time, one family returned the baby home.
How can a children's human rights activist help?Maria Lvova-Belova: One of the strategic areas of my work is a project aimed at accompanying children with disabilities throughout their lives. It involves the development of systemic measures to identify children with disabilities, work on early assistance, education, employment, so that the family has a route from the birth of a child to accompanied residence and employment. Now, under the auspices of the Commissioner, a coordinating council on social integration issues is being formed, which will unite the relevant ministries and departments, including in the development of early assistance.
But this is all about tomorrow, and what would you advise a future mother today, who saw the results of screening with frightening pathologies? What should she do?
Maria Lvova-Belova: In the age of the Internet, of course, it's easier. Today you can find a lot of useful information - look for specialized funds that deal with the disease. See how developed the support of families with disabled children is in the region. Now both maternity hospitals and social security are also trying to share information on where you can get help. Social services are also actively developing. The Synodal Department for Charity and Social Service of the Russian Orthodox Church is no less active.
You can look, for example, at the website of the community of parents raising children with disabilities - VORDI, this organization has representative offices in 75 regions, there is a "Family Reception" in 17, they will definitely tell you what to do in this or that situation. You can use the resource "Special Childhood", which contains legal information. It is also worth looking for those who have already encountered this and join support groups. Do not give up, search, find out, ask where you can turn and what you can do. Every year the situation is getting better. Most importantly, understand that you are not alone.
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