Disability World
A bimonthly web-zine of international disability news and views • Issue no. 12 January-March 2002


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The Desperate Situation of Children with Disabilities in Russian Institutions
By Sergey Koloskov (ads@rmt.ru)
(This article was first published in the International Children's Rights Monitor, Volume 14 No 2; May 2001, republished with permission)


Thirty thousand mentally disabled children stay in Russia's state institutions, where Russian laws have proved ineffective for over ten years.
"We observed numerous children self-stimulating through rocking or through self-abuse ... In many cases, we identified children with disabilities who were reportedly left for hours or days in physical restraints (strait jackets that prevent the movement of arms). In practice, these children may live their whole lives in restraints."
Findings and Recommendations of a UNICEF Sponsored Fact-finding, 1999. Mission to the Russian Federation by Mental Disability Rights International.

"The handicapped children permanently living in institutions for the disabled receive continuous education aimed at their integration into society as complete human beings with equal rights".
Article 26 of the Law "On Basic Principles of Social Security of the Disabled in the USSR" dated December 11, 1990.

"The Law shall take effect on January 1, 1991 ...
7. For the Council of Ministers of the USSR ... to ensure compliance of regulatory acts to the above Law and for the ministries, state committees and agencies to annihilate those regulatory acts that contradict it."
Decree of the Supreme Soviet of the USSR of December 11, 1990 "On the Enactment of the USSR Law On Basic Principles of Social Security of the Disabled in the USSR".

"...current regulatory documents (standard organizational and personnel structure, sanitary norms, personnel functions and standard provisions) have not been updated for decades...
State Report "On the Position of Children in the Russian Federation in 1998".
Introduction
In 1989, I became a father of a disabled child. My wife gave birth to a beautiful girl with Down's Syndrome. Already in the maternity ward we encountered discrimination against such children when the doctors strongly suggested that we should immediately place the child in an orphanage as a ward of the state. When we did not agree to do so and brought our daughter home, our family was left to face its problems without any help from the state. Later on, we learned from other parents of disabled children that we were entitled to a small pension (substantially less than the poverty level). However, we received nothing for the upbringing, development and rehabilitation of the child.

Trying to figure out how I could help my child, I started looking for assistance everywhere it could potentially be found, and finally contacted activists of the community of DS children's parents, members of the European Down Syndrome Association, first in Holland and then in other countries. They provided me with moral support and vital information. I understood then that it was impossible to help my child alone, and that if I wanted to stay in this country my child could obtain sound help only together with all the other children. Therefore, in 1993 I founded together with several other parents - and I am still the head of - the Down's Syndrome Association (DSA), which was the first Association of Down Syndrome in Russia (see below).

The orphanage system
My first visit to a nursery home took place in the summer of 1994. As the president of DSA I was asked then to help Natasha Maslova, a girl with the Down Syndrome, who was dying in the nursery home of malnutrition.

A woman who took care of the girl in the institution for small children raised the alarm. As usually happens when they grew a bit older, Natasha and other children were transferred from this institution into other institutions which are subject to the Ministry of Labor and Social Development. Two children, Lidochka and Tolya, died within six months. Natasha Maslova, who has Down's Syndrome, had lived in the institution for two-an-a-half years and was still alive but she needed urgent help. She was nine years old and weighed 6,5 kilo. Natasha cried whenever you touched her, she couldn't concentrate her glance, always sucked her sheet.

In the nursery home I saw horrors that were hard to put into words. Something that eyes refused to believe, and that could never happen to children in a civilised country abiding by the law.

There were about 15 children in the ward. They could not serve themselves and their age varied from five to 13. Many of them had skin wounds, some were heavily emaciated, some swaddled in sheets (free fixation), others had their hands and legs also swaddled.

It was stinking of urine in the room. The room was locked and the children were left to themselves crying.

Only one orderly woman worked in several wards. This post doesn't require any special training.

The nurse's aid explained to me that she serviced three such rooms and that the children were swaddled because, without a constant fixation, they sucked the edge of the sheet and could choke, eat excrement or scratch themselves and others.

Media attention creates breakthrough
I recorded everything I saw, including the interview with the nurse's aid on a video camera. I presented this video record to the Presidential Committee for the Disabled and the Russian and foreign television companies, which showed it in Russia and abroad.

It seemed to me then that, as soon as the community saw what was happening, the children would receive the necessary help and their sufferings would be immediately stopped. But in the reality it turned out that it was just the beginning of a fight, which is still going on. The fight is not against the authorities, not against certain people. Our adversaries are only the death and the sufferings of the children.

In 1994, having failed to receive help from the authorities, I together with my friends managed to check Natasha Maslova into a hospital, found money to have somebody take care of her, and found two people from the Orthodox Church who were supposed to nurse her in turn. Natasha started to gradually gain weight and develop.

Four months later she learned to walk, eat on her own, play, communicate with children and grown-ups, she became the favourite of the hospital department where she was treated. And in another two months, during her official visit to Russia, Princess Diana visited Natasha when she learned about the girl's story. After that Natasha's story became the symbol of Russian Down's Syndrome children's tragedy and return to life. The story was published in many newspapers, and shown in domestic and international TV programs.

In 1995, Natasha's story was retold in a DSA letter to the RF President. Two reports about the fate of the girl and the DSA's appeal to the President were broadcast on Russia's TV Channel 2 in the news program. As a response, the Presidential Administration issued a message for the government, where among other things it was said that:
"Taking into account the urgency of solving problems relating to the treatment and working with children with Down's syndrome for their assimilation into society as people deserving the same opportunities as others..."
Although nothing was done, this message laid the foundation of the cooperation between the DSA and the state.

In 1995-2000, DSA together with international charity organisations, including Bureau International Catholique de l'Enfance, "Liebenshilfe" of Germany, "Ruslands Glemte Born" and "Forgotten Children" of Denmark and others, and in cooperation with the authorities and Orthodox Church participated in actions aimed at the provision of additional care to handicapped orphans in one of the Moscow's orphanages. Thanks to these efforts, over a hundred children like Natasha were reverted back to life. Incredible changes that took place were videotaped and photographed ("Children Before and After"). These video and photo documents are at the same time vivid evidence of discrimination, sufferings and neglect of children's basic interests.

Trying to challenge the system
Over the years I visited many orphanages in various Russian regions. These visits confirmed my belief that what I had seen during my first visit was typical of all such institutions, and that it was the result of the rules they followed stipulated in regulatory acts.

According to one of the ideologists of the orphanage system, Professor of the Central Institute of Disability Expertise, Ms. N. Dementyeva, up to 40% of children kept in orphanages are declared untrainable. About half of these children or 17% of the total number of children in orphanages are in rooms for shut-ins, according to the State Report "On the Position of Children in the Russian Federation in 2000". The so-called "untrainable" children receive no upbringing, education or rehabilitation services. Most of the work is performed by nurses' aids, who have no professional training, are badly paid and are insufficient. According to the job description, personal interaction with children or stimulation of their development is not included in their functional duties, and they hold no personal responsibility for the children's lives and health. They are the mostly badly paid categories of employees.

Around 25% of children are put into these institutions due to a wrong diagnosis of "deep mental disturbance". For the most part they are children from broken homes, and in the institution they receive elementary education and do household chores without getting paid for it. Other children (about 30%) suffer from moderate mental ineptitude and are taught nothing but elementary self-service skills.

The life of children in such institutions features the following: limited space and subject environment; limited communication; the lack of communication with those who either do not live or do not work there; difficulties in communication with parents and relatives; extreme over-crowdedness of groups; and the inability to receive individual care and attention; limited communication and movement within the orphanage; restricted activities; violation of privacy; the lack of professionally trained staff and modern methodological and teaching materials.

Violating children's rights and contradicting modern treatment principles
These adverse features violate the children's rights and contradict modern principles of aid to people with disabilities, such as normalisation, provision of basic needs and flexible treatment. These conditions aggravate mental disabilities and slow down the children's development, give rise to incorrect behaviour and/or aggravate it, lead to depression, further mental derangement and nervous breakdowns, and thus present a threat to their lives and health.

In 1995-2000, often with the DSA's support, delegations of international organisations, mass media and diplomatic circles visited orphanages and witnessed the above-described way of life. As a result many reports, newspaper articles and television reports appeared. In 1998 and 1999, the reports of Human Rights Watch and Mental Disability Rights International & UNICEF were submitted to executive authorities. In early 1999, these reports and video materials developed by DSA ("Children Before and After") were presented to the UN Committee on the Rights of the Child during the discussion of the State report of the RF and the alternative report prepared by NGOs.

In February 1999, for over a week four main Russian television channels broadcast and commented on the desperate state children in one of the orphanages in the Moscow region. President Yeltsin expressed his concerns about the state of affairs with these children, according to his press secretary, who gave an interview to the news program on Channel 1. The press secretary, the Vice Prime Minister and Minister of Social Affairs received materials on the work of DSA in the orphanage, including the photos of children before and after the Association started working there.

At last, in late 1999, the state officially admitted that children's rights are violated in orphanages and nursing homes. Thus, in the official Report of late December 1999, "On the Position of Children in the Russian Federation in 1998", it is stated that:
"...certain categories of children declared untrainable are often placed in institutions regulated by the Ministry of Labour of the Russian Federation where they have no opportunity to develop since they find themselves outside of the educational environment." (p.26) (emphasis added)

"...ensuring a medical and social rehabilitation of children with developmental disturbances is hampered in institutions of the Ministry of Labour of the Russian Federation." (p.47) (emphasis added)
On 29 June 2000, Vice-prime Minister of Russia, Valentina Matvienko, gave the following evaluation of nursing homes and orphanages during the interview with Channel 4 in the program "Hero of the Day":
"I want to say how important this is. Formerly it was if we took invalid children and just wrote them off, put them away in state institutions where their condition simply got worse."
New promises, new challenges
In summer 2000, a newly appointed Minister of Social Affairs, Alexander Pochinok, met with DSA and highly estimated the developed plan of bailout rehabilitation measures. The Minister promised to amend the orphanage-related regulatory documents prior to drawing up the Federal Budget 2001.

In autumn 2000, the Ministry of Social Affairs underwent positive reorganisation, according to which the orphanages were transferred from the Department of the Elderly to the Family and Child Care Department. We soon learnt that the Presidential Fund would allocate approximately 100 mln. Rubles (3.3m US$) to the program "Children of Russia", most of which would unfortunately be spent on medical equipment. It seemed that the system which violated children's rights was ceasing its existence.

In December 2000, however, our concerns grew, since the Ministry broke its promise and the Budget 2001 for the orphanages was drawn up following on the same regulations as in previous years! The State Report "On the Position of Children in the Russian Federation in 2000" mentioned no drawbacks or revisions in the operation of orphanages. Moreover, the report says that:
"The orphanages provide high quality medical care, a set of rehabilitation measures and education and help prepare children with disabilities for independent life and integration into the social society."
About the children, who are imprisoned for life in their beds, it was said that they were "in continuous bed rest".

The children's homes come under the auspices of the Ministry of Health, and they look after children up to the age of 4-5. Once they reach this age, those who are classified as mentally handicapped are transferred to orphanages under the Ministry of Labour and Social Affairs, where they remain until the age of 18. At that age they are sent to psycho-neurological nursing homes for adults under the same ministry, where they remain until death.

The existence of such places for children is a tragedy and a disgrace for Russian democracy.

The breaches of children's rights in these orphanages, which are a kind of psychiatric institution, can be compared in their negative consequences with the compulsory psychiatric "treatment" of people for political reasons, which was indulged in during Soviet times, and condemned by international opinion. In 1991 such acts were also condemned in Russian law.

Let us examine the position of these invalid children in the orphanages in the light of current Russian legislation. What laws and regulations govern the orphanages, as they inflict suffering on children and deny them their rights?

The Rights of Children and the Law
In 1990, four years before I first set foot in an orphanage, the USSR ratified the UN Convention on the Rights of the Child. And in that same year the law on Basic Principles for Social Protection in the USSR was enacted, pursuant to which children in orphanages are guaranteed "uninterrupted care and education combined with social adaptation". Article 26.1 of the law also provides for "review and repeal by ministries and state committees and departments ...of regulatory acts which contradict... the law by 1 July 1991." (emphasis added)

In 1992 Russia enacted a Law on Education. Its preamble states: "The right to education is one of the fundamental and inalienable constitutional rights of citizens in the Russian Federation." Furthermore, the law mentions the following:
In Russia "the opportunity to receive education is guaranteed irrespective of... the state of health, or social... position" (Article 5.1);

Principles of education are: "common access to education, adaptability of the education system to the levels and special features of development and readiness of students and pupils." (Article 2); "The state will provide conditions for people with developmental delays to obtain an education, correct their delays in development and social adaptation by means of special educational approaches."(Article 5.6); (emphasis added)

"Students in all educational institutions have the right to obtain an education in accordance with state educational standards, and to study within these standards under an individual educational program..." (Article 50.4) (emphasis added)

"Financing" of special or remedial "educational institutions shall be carried out to increased standards" (Article 50.10)
That same year a law was enacted On Psychiatric Assistance and Guarantees of Rights to Their Provision, which also defined the status of invalid children with a mental handicap and the work of orphanages for such children, indicating that education is the most important aspect of rehabilitation for them. The law's preamble states that it is to be applied:
"...taking account of the fact that psychological disorders may alter relations between ... society and the disordered person;

noting that the lack of the necessary legislative regulation of psychiatric help might be one of the reasons for its use in non-medical purpose, and damage people's health, human rights and dignity, and the state's international reputation; (emphasis added)

taking note of the need to implement in Russian legislation human rights and freedoms which are accepted both throughout the community of nations and in the Russian Constitution itself..." (emphasis added)
In Commentaries on the Law, it is stated that since in the USSR human rights were breached by the practice of psychiatric abuse, the Law is bound to guarantee that such abuse is intolerable in democratic Russia. Because of this, and also because observation of human rights for those people who have psychological difficulties is one of the most fundamental objectives of the state, guarantees of human rights are set out in the law's heading.

The new Russian Constitution
In 1993 a new Russian Constitution was enacted, having direct effect (Article 15.1), which states that basic legislative acts in Russia, in accordance with which human rights and freedoms are acknowledged, are generally accepted principles and norms of international law (international standards) and the Russian Constitution (Article 17.1).

Here below are some excerpts from Commentaries on the Russian Constitution by the Institute of Legislation and Comparative Legal Studies under the Russian Government, and from Commentaries on Russian Legislation in the Sphere of Psychiatry by the Institute of State and Law at the Russian Academy of Sciences.

Under Article 1 of the Constitution, the Russian Federation is a democratic, federal, lawful state. The fundamental values of a democratic state are human life and human rights and freedoms. These provisions are enacted in Article 2, which also establishes that acknowledgement, observation and protection of human rights and freedoms constitute a duty of the state. These norms of the supreme law of our country are closely related: no state may call itself democratic and lawful if people, their rights and duties do not have priority over other social values.

In the Constitution the concept of "higher value" relates to people, their rights and freedoms. In these phrases there is no definition of any other legal concept, which falls within the foundations of constitutional structure.

It is securing human rights and freedoms, which constitutes the main objective of a democratic, lawful state.

The state has a duty to MAKE HUMAN RIGHTS AND FREEDOMS GENUINE, and to defend them, and this is provided in each chapter of the Constitution. These values are of extreme importance for each member of society, especially when they are threatened with extinction. Developmental delays, whether physical or psychological, are indeed factors "of increased risk" which not uncommonly lead to infringement of the rights and freedoms of those who suffer from them.

For this reason the state's task in regard to people with psychological, physical or mental handicap is "to give human rights and freedoms a legal form and establish procedures which will protect those who have such rights against any infringements against them of whatever nature."

For the purpose of realisation of the rights and freedoms, which are recognised and guaranteed by the universally accepted principles and norms of international law and the Constitution of the Russian Federation, the following laws were adopted in 1993-1998, which were extremely significant for determining the legal status of disabled children in nursing homes and orphanages: "The Family Code of the Russian Federation"; "Fundamental Provisions of the RF Legislation on Citizens' Health Protection"; the federal laws "On the Main Guarantees of Children's Rights", "On Social Protection of Invalids in the Russian Federation", "Fundamental Provisions of Social Services for the Citizens of the Russian Federation", "On Social Services for Elderly Citizens and Invalids". Among other social guarantees, to each disabled child the laws ensure living in a specialised nursing home, protection of his/her life and health, care, upbringing, education and rehabilitation.

Analysis of three relevant laws
Let us briefly look at three of these legislative instruments. "The Family Code of the Russian Federation" reads:
"If an official or grassroots become aware of a threat to the life or health of a child, or a violation of his/her rights and legitimate interests, he/she shall inform the local custodianship body of the violation and/or threat. On receiving such information, the custodianship body shall take appropriate measures to protect the rights and legitimate interests of the child" (Article 56.3).
The federal law "On Main Guarantees of Children's Rights" states that "the goals of public policy in ensuring the rights of children are: to give full effect to the rights of children, ... and redress grievances whenever children's rights are violated..." (Article 4.1) Further on, the law highlights that: "Public policy in ensuring the rights of children is a priority for the Russian Federation authorities..." (Article 4.2). The law stresses that disabled children "are entitled to special care and protection of federal authorities, legislative and executive bodies of the subject of the Federation, as well as local authorities". (Article 15.1)

The preamble of the "Law On the Social Protection of Invalids in the Russian Federation" provides that:
"The goal of public policy in regard to the disabled is to ensure that citizens with disabilities have equal opportunities to exercise their civil, economic, political and other rights and freedoms guaranteed by the RF Constitution and the universally recognised principles and norms of international law and international treaties executed by the Russian Federation."
Article 2 of the Law says that the state guarantees social protection to people with disabilities as:
"...a set of economic, social and legal measures facilitating rehabilitation and making up for the limitations in their lives due to their handicaps, and aimed at creating equal opportunities with other citizens to participate in the life of the society."
Articles 9-12 of the Law provide that the state guarantees the rehabilitation of invalids through a set of "medical, psychological, pedagogical, social and economic measures... [r]ehabilitation is aimed at restoring the social status of the disabled, his/her material independence and social adaptation". Rehabilitation should be carried out in accordance with a "rehabilitation program individually developed " for every invalid, "the implementation of which is binding on respective federal and local authorities and organizations, regardless of their legal status and the form of ownership".

Articles 18-19 of the Law provide that the state guarantees "education for the disabled children", "in accordance with their individual rehabilitation program", as well as "appropriate rehabilitation measures" and creates "appropriate conditions" for their integration in general-type pre-school childcare facilities and for educating them in general-type educational establishments, equipped, where necessary, with specialised technical facilities." Only those children who have proved that "the condition of their health ... excludes the possibility of their attending the general-type pre-school childcare facilities, specialised pre-school facilities shall be established."

The above-listed laws establish responsibility for their violation and oblige the Government of the Russian Federation (ministries and agencies) to bring all their normative documents in conformity with these laws. The Civil Code and the Criminal Code also provide for the responsibility of the violators of some provisions of these laws.

To implement these laws, in 1993-2000, the Government of the Russian Federation, its ministries and agencies adopted a number of regulatory documents specifying the order and procedures of these laws.

How has it become possible that the state has been violating children's rights for such a long period and on such a large scale, when the law is supposed to protect the rights of children in Russia?

In the Report, the state indicates one of the reasons behind this situation: "current regulatory documents (standard organizational and personnel structure, sanitary norms, personnel functions and standard provisions) have not been updated for decades" (p. 48). (emphasis added)

The main activities and funding of nursery homes is regulated by three acts of the Ministry of Social Affairs. Two of them, adopted in 1962 and 1985, regulate the issues of medical staff, most of which are nurses' aids, who work with the so-called "untrainable" children. The third document, Provisions on the Orphanage dated 1979, stipulates the general framework of the orphanage/nursery home performance.

The last document, which forms the basis for the operation of homes nursing 30,000 children with disabilities, who, according to the Law on Basic Guarantees of Children's Rights have the right for special care and protection of the state, has a clause on following the guidelines of the Communist Party of the Soviet Union, which in fact was abolished 10 years ago.

These three regulatory documents run counter to general principles and international rules, the RF Constitution and all the ten aforementioned laws, therefore, they should have been put out of effect in 1990-91 during the execution of the Convention on the Rights of the Child by the USSR and the Law on Basic Principles of Social Security of the Disabled in the USSR, and after that should have been abolished again and again after the new RF Constitution and each of the following laws was ratified.

Thus, three regulatory acts - a few pages drawn up by some officials back in the sixties - have proved more powerful and viable than the Convention on the Rights of the Child and other international treaties ratified by the Russian Federation, than the RF Constitution, ten federal laws and dozens of governmental decrees and ministerial provisions. The three regulatory acts have managed to annihilate all of the above acts in all of the Russian orphanages and nursing homes that house to the tune of 30,000 children. A few yellowish sheets have been more powerful than the protest of Russian and international communities, recommendations of the UN Committee on the Rights of the Child, the indignation and regret of political figures, state officials, a candidate for the presidency and even a RF President, as expressed by his press secretary. These sheets became the indicators of the Russian state's respect for the rights of children, awareness of its laws and commitment to them.

Conclusions
In view of the above, it is obvious that the state will continue to refrain from executing the current laws or developing regulatory acts to support these laws and specify the law enforcement procedures. It will also refrain from working out new laws to ensure the needs of children and disabled citizens, reflecting the Convention on the Rights of the Child and other international standards in Russian legislation.

There is a need for powers, organisations and bodies who would operate on a permanent basis and pressure the state to carry out all the above measures pursuant to the law. Among such powers are, undoubtedly, mass media, influential public figures, recognised Russian and international organisations.

According to international experience, however, participation of organisations of disabled children's parents in this process is a mandatory condition to ensure adequate protection of the rights of disabled children.

The UN Standard Rules calls on states to ""involve organizations of persons with disabilities in all decision-making relating to plans and programs concerning persons with disabilities or affecting their economic or social status." Article 33 of the Law "On Social Security of the Disabled in the Russian Federation" reads, that the state ..."in order to protect the rights and legitimate interests of the disabled and to provide them with opportunities equal to other citizens" shall involve "authorized representatives of the communities/organisations of invalids in the preparation and approval of respective decisions". The state recognises that communities of invalids are a means of social security, which according to Article 2 shall be guaranteed by the state. The state shall provide "the above communities with assistance, including material, technical and financial aid".

In reality parents' communities receive little support from either the state or international organisations. State authorities involve no parents' organisations in the preparation and approval of decisions that have a direct impact on their children.

A clear need for assistance to parents' organizations
International organisations usually facilitate pilot rehabilitation projects, professional training, and scientific and professional exchange projects. Therefore, judging by these as well as other well-known facts, which, however, go out of the scope of this article, we believe it is necessary to develop assistance programs for parents' organisations engaged in children's rights protection. These programs will support pilot advisory councils comprised of representatives of the state, scientific and educational agencies and organisations, e.g. universities and international experts. These advisory councils will focus on the following three aspects of children's rights protection:
  • Participate in the development of legislative and regulatory documents;
  • Ensure compliance with new and earlier adopted legislative and regulatory documents and, if necessary, take legal action; and
  • Evaluate efficiency of current laws and regulatory documents.
Sergey Koloskov is founding Director of Down's Syndrome Association (DSA), which was the first Association of Down Syndrome in Russia.

Down's Syndrome Association (information, advocacy, intervention, integration)
Myasnitskaya 13 - flat 3
Russia 101000, Moscow,
Tel/fax: (7-095) 925-64-76
E-mail: ads@rmt.ru

Down's Syndrome Association (DSA) is a society of parents of children and adults with Down's Syndrome and was established in March 1993 in Moscow. DSA works to ensure the survival and continued development of children with Down's syndrome, and also to promote their integration into society as complete human beings with equal rights. At present DSA represents and supports 310 families in Moscow and Moscow Region, about 280 families in 60 other Russian regions and about 30 families in the CIS countries. As well as this, with the DSA's support 39 parents' groups have been set up in various places. In order to reach DSA's overall goals:
  1. we work with federal and regional Russian state bodies , mass media and cooperate with well-known international organizations ;
  2. we provide advocacy and information services for parents of DS children and professionals in Russia and CIS;
  3. we provide early intervention, integration, education, rehabilitation (art and sport) services
  4. for DS children and adults, and social support for their families in Moscow and Vologda;
  5. Additional care has been organized in a Moscow Children's Internat for 150 invalid orphans with severe mental and physical handicaps, 117 of whom have been officially declared to be "untrainable" children and they have been in a very grave condition.
Certain of our achievements and activities are unique and well known in Russia and abroad.

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