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V. THE POINT OF NO RETURN: DIAGNOSIS AT AGE FOUR

The diagnosis that's been given by pediatric neurologists sticks to children for the rest of their life. This is a disaster for the children.154

This evaluation commission is our greatest shame.155

As the linchpin in the life of a Russian orphan, the test by the state-run Psychological-Medical-Pedagogical Commission, with the consequence it carries, is the single policy most criticized by advocates for children abandoned to state institutions in Russia. Just as in the notorious orphanage system of Ceausescu's Romania, which international and Russian child development experts cite for comparative reference, the evaluation of all children at the age of four is the basis for the triage of orphans as they are consigned to state institutions for the rest of their childhood.

Among the flaws in the evaluation procedure most often cited in our interviews with doctors, child development specialists, and human rights advocates were:

· the brevity of the examiners' one-time session with the child;

· the intimidating presence of a panel of strange doctors to a child who has limited exposure to life outside the walls of an institution;

· the inappropriate questions often used to measure the intelligence of such a sheltered child;

· the misdiagnoses and the virtual impossibility of revoking them;

· the dire consequence of a “life sentence” in a psychoneurological internat;

· the discrimination against “light” oligophrenics seeking higher education, jobs and housing.

The disadvantages confronting the four-year-old orphans are similar to those they face at the moment of abandonment, when they can be given a provisionaldiagnosis of delayed or retarded.156 But the evaluation performed at four years of age marks a point of no return. A diagnosis of serious oligophrenia—as imbetsil or idiot—will condemn the child to life in a psychoneurological internat, where his or her rights to education, health care, and protection from harm will be permanently denied. Based on independent investigations in into the accuracy of diagnoses, published in 1991, from 30 to 60 percent of orphans diagnosed as oligophrenic may be wrongly ascribed.157 And Human Rights Watch learned from the staff of two internaty for severely disabled orphans that perhaps 10 percent of their children could have "useful lives."158 Conservatively then, at any time in Russia, at least 3,000 of the 30,000 children in internaty could be there by mistake, and untold thousands more who have diagnoses of lighter oligophreniadebil—may be wrongly marked as well. Neither these children, nor those who have severe congenital disabilities, should be subjected to such violations of their most fundamental rights.

Introduction to Russia's Psychological-Medical-Pedagogical Commission

During its month-long mission to Russia, Human Rights Watch made at least half a dozen attempts to interview a member of the Psychological-Medical-Pedagogical Commission or, at a minimum, to obtain a copy of the clinical and educational standards used to evaluate the children. We never succeeded. The resistance we encountered harkened back to the Soviet protection of even the most innocuous of public documents as state secrets.159

Interviews with orphanage staff and others allowed us to piece together information on the composition and procedures followed by the commission. Headquartered at Chief Psychiatric Hospital No. 6 in Moscow, the Russian Psychological-Medical-Pedagogical Commission is an arm of the Institute of Corrective Pedagogy, operated by the Ministry of Education. It is affiliated with the Ministry of Health, which is effectively a partner in the process.

The panel for a given evaluation can vary from two to several members, and should include at least one education specialist and a psychoneurologist. According to a Russian child development expert, the original concept behind the commission was to classify children in order to prepare them for more efficient rehabilitation. The children were all compared at a certain age level, and it was thought that if a child could not be trained, he or she would have to be separated from the rest. There was no interest in integrating them with the mainstream of children.160

A Human Rights Watch interview with a Ministry of Labor and Social Development official who had served for many years on the Psychological-Medical-Pedagogical Commission in her previous position with the Ministry of Education corroborated this view. “The Ministry of Education takes care of children who can be trained and the system of the Ministry of Development (sic)—we cover kids who cannot be trained,” Valentina V. Terekhina told Human Rights Watch.161 When we asked what happens to children at the time of their important diagnosis at the age of four, if they are classed as imbetsil or idiot, she repeated:

So it’s the same. If you take the children in the baby houses who have potential to be trained, they go to the Ministry of Education. Those who cannot be trained, such as Down syndrome for example, they are transferred to invalid houses of [the] Social Welfare [Ministry] (sic)...We cover the children of very very low intellectual capabilities, and practically speaking, those who cannot take care of themselves—daily care—because their intellectual level is so low, low, they cannot even do that.162

The very act of judging a wide spectrum of children with correctable disabilities as “ineducable” is a fundamental form of discrimination, and an abrogation of the basic right to education set forth in the International Covenant on Economic, Social and Cultural Rights, and the Convention on the Rights of the Child. Moreover, the hostility of state officials to the mounting criticism of the commission by independent Russian specialists poses a particular obstacle to transparency and reform. In our first attempt to obtain the public standards used for the evaluation, a Ministry of Health official, Valentina B. Chumichova, lambasted Russia's leading children's rights advocates and independent child psychiatrists as people who "need to break the whole system of health and education for orphans."163

She also criticized the advocates' goal of transferring disabled orphans to the jurisdiction of the Ministry of Health, which they consider a more appropriate authority than the Ministry of Labor and Social Development for the health, development and dignity of vulnerable children.

Valentina B. Chumichova’s comments reveal stark insights into the official attitude toward the neglect and cruelty that is widely documented in state institutions for children. "All the problems in our system are caused by lack of money. If a person gets only 300,000 rubles ($50), he cannot be loving to a child. Because if you get this salary and go out into the street and see a kitten, you're going to kick it when you pass it."164

The Ministry of Health official further expressed the deep-rooted cynicism found among many government officials working in social welfare when she questioned the motives of the vocal human rights groups. "They only raise this problem because it's very modna [chic] right now, not because they're worried about children."165

Human Rights Watch also contacted a Ministry of Health official named Svetlana R. Konova, who is involved with the operation of baby houses. To our request for the standards or tests used to evaluate orphans at the age of four, she replied, "It's not so secret but I should not give information without the permission of my boss."166

Further calls were placed to Chief Psychiatric Hospital No.6 in Moscow, where we reached Lyubov A. Andreeva, a deputy to the head of the commission. She, too, advised Human Rights Watch that she needed permission from her superior before she could meet with us. On the matter of testing standards, however, she went on to say, "We have no standards. We have very professional staff, all good pedagogues and doctors. And they know all about this problem."167

As Human Rights Watch requested details, the official answered, "We use three methods—Wechsler, Rubinshtein, clinical razbor [classification], and other methods. We use a program designed by a scientist at the Scientific Institute of Psychiatry in Moscow to determine the intellectual level of the kids."168

Human Rights Watch obtained a contrasting view of the official testing standards from a child development specialist working with one of Moscow's few innovative foster care programs. "The methods the commission uses are not so modern," she said.169 Moreover, she criticized the format of the evaluation, which creates an intimidating environment for a four-year-old. "Imagine, many adults come here and sit down. It is frightening to the child. They ask something and the child's scared. What level of development can he show the adults?"170

A hazardous turning point: intimidation, inappropriateness and error

It is difficult to overstate the significance of this examination, which for some children, is a matter of life and death. The deterioration of children committed to these internaty is of grave concern to doctors who examine them. Dr. Vsevolod Rybchonok, who has conducted general medical examinations on several thousand children during the last few years told us:

If they're transferred to special institutions [internaty], it's like a prison to the brain. There's a total lack of sensory stimulation. There's no input, nocompetition with other children if the others are even more retarded. It's just a process of slowing down, slowing down, then idling—and then—stop.171

It is impossible to know the total number of misdiagnosed Russian orphans who have been warehoused in the fetid psychoneurological internaty under the Ministry of Labor and Social Development. According to Dr. Severny,

"About nine to ten years ago some people from Moscow State University surveyed children in auxiliary internaty operated by the Ministry of Education for children diagnosed as lightly debil. What I was told by the people who did that survey, was that they found 80 percent of the diagnoses were inaccurate—in other words, not oligophrenic. That is the only survey I know of and it was not published. Nobody's heard anything from the survey team since."172

In 1991, evidence of unfounded diagnoses was again a finding of an investigation conducted by an international team of child development experts in several orphanages in Moscow and St. Petersburg.173 The team, sponsored by the nongovernmental organization Christian Solidarity International (CSI), found that among fifty children in one group tested in St. Petersburg, "one-third of the children classified as oligophrenic scored within normal limits."174 After doing a more thorough test on some children, the team found the results even more striking and disturbing. Of the thirty-four oligophrenic children aged six years and over, two-thirds showed evidence of average or better ability.175

The CSI investigators concluded that both of the psychologists on the team were "concerned about the large numbers of children assigned questionable diagnoses. These were usually expressed in negative, denigratory terms such as'debilitated oligophrene,' 'imbecile,' idiot.' Once imposed in early childhood, these labels are seldom reviewed and reversed."176

It was clear to the director of a large baby house in a region north of Moscow that orphans were at a serious disadvantage when it came time for the fateful evaluation. "It's very difficult for orphans who have no parents who can appeal the process. They are limited in opportunity at the stage of the commission evaluation, compared with kids with families. It's a human pain for us, as well as a professional one."177

Inappropriateness of the test

Two of the leading factors that critics blame for inaccurate diagnoses are the setting and criteria used, which they argue are inappropriate for testing children who have spent their first four years of life in confinement. Again, Dr. Vsevolod Rybchonok told Human Rights Watch:

They just look at the child and ask a couple of stupid questions and then make the diagnosis, while the child can be frozen in front of the strangers. I've seen that a few times. Coming from their little narrow world, the kids don't like it if you ask direct, bold questions...Then one of the doctors will say, “That's a mentally retarded child.” Unfortunately the children don't live in this world [that we live in]. They're living outside this world.178

A long-time volunteer in the institutions echoed this view:

I know the people who do the psychiatric evaluation. They test the children on concepts. They test if they can walk. Now here was a child whose legs were bound up and was not allowed to walk. They go around and look at these children, who've never been outside these four walls. It's just a land of the absurd. 179

Not only can the queries be inappropriate to the child’s stultified upbringing, but the combined effect of an orphan's earliest diagnoses with the neglect in the baby house can confound even a careful examiner. One psychiatrist working in an internat told us, "We have an orphan who got a job in our institution. I supervise her. She's debil. But everything is mixed up—what’s the result of congenital retardation and what is neglect? It's hard to tell after a certain point."180

Justice denied: the right to appeal diagnosis

Under Russian law, orphans have a right to appeal their diagnoses, particularly since “the development of intelligence is very unpredictable and at certain stages intelligence can change noticeably,” we were told by an official of the Ministry of Labor and Social Development.181 Valentina V. Terekhina went on to explain to Human Rights Watch:

I used to be a member of the commission myself and if there are (sic) any suspicions that we are not right, then the decision is made in the interest of the child...The management of all institutions have all rights to apply to the commission for a new examination of the child. And actually those children who have parents and they don’t agree with the diagnosis have the right to appeal it.182

In practice, it is nearly impossible for a four-year-old in state care to appeal his or her diagnosis. One international charity worker described this bind to Human Rights Watch, and further expressed her concern that some diagnoses are made to discipline difficult children, "Parents have the right to insist that their kids get a reassessment. But what if the child has no parents. I asked this of someone from a regional children's home and she just looked at me. Obviously this hadn't occurred to her.”183 The charity worker went on:

The children I know who were sent to internaty are not all mentally handicapped. One was sent to a mental institution because the director was offended by the family. One older child was sent to a mental institution because he was smoking.184

While scores of specific cases of misdiagnosis are well known to the concerned staff and charity workers we interviewed, many children will never get to tell what their experience was, having been delayed and handicapped, and never taught to speak.

But another group, interviewed by Human Rights Watch, is capable of describing the terrible impact on their lives, and some even recall their encounter with the Russian Psychological-Medical-Pedagogical Commission. Now in their teens, these orphans are in a category of luckier oligophrenics, because they were diagnosed as only “lightly” debil and thereby spared the damning judgment of being ineducable. They have instead been channeled to special institutions run by the Ministry of Education, which provide minimal classroom schooling, followed by vocational training in a Pedagogical Technical Department (PTU).

As Human Rights Watch learned during a visit to a relatively well-organized PTU several hours northeast of Moscow, the discriminatory diagnosis of “oligophrenia” remains in the orphans' official files and stalks them into adulthood. According to a report by a leading charity in Moscow, it prevents them from applying for a driver's license.185 Moreover, the compound stigma of abandonment and "small brain" is recorded in black and white in their personal file, which follows them from institution to institution, and can only hamper their efforts to establish themselves in society and earn a living.186

In a meeting with about ten articulate girls and boys and two resident vospitateli who were unusual in their strong advocacy for the children, Human Rights Watch noted the "Catch-22" that traps these orphans in several respects. The children said that they wished to apply to have their diagnosis lifted from their file, but they must have finished eight years of standard school in order to apply to the commission for a re-analysis. As light oligophrenics, however, they have onlyhad access to the equivalent of six years of standard school. According to the vospitatel' at the PTU, there are no teachers available to help them make up the extra two years.187

Even if there were a remedial school for these children, the vospitatel' explained that they would still need individual tutoring, "because if they haven't had the chance to catch up to the level of standard education by a certain stage, kids don't learn as well. We know two boys who were eager and willing to catch up, but it turned out to be too hard."188

The children, between fifteen and eighteen years of age, are now enrolled for about two years at the PTU to receive training toward trades including carpentry, sewing, and baking. They are angry that their basic rights are restricted because of the prejudicial diagnosis of oligophrenia in their files.

The fact that the children are so aware of their rights is extraordinary enough, and they owe it to the exceptional vospitatel' who instituted a program “on social pedagogy and social protection” six years ago. This again illustrates the dramatic and somewhat random variation in protection afforded orphans in Russia.

Intimidation in front of the Psychological-Medical-Pedagogical Commission

The following accounts in their own words best convey the bewilderment and injustice these adolescents feel about their fateful tests and the label of oligophrenic, which some told Human Rights Watch they received when they were very little, and others when they entered or transferred institutions:

Many of us could have studied in regular school. When I was tested in first grade, I studied for two years there. But then I was sent to an internat (for debily) because I didn't do well in school. I was asked idiotic questions by the commission and I didn't want to answer. For example, “What's the weather like outside?” I said to them, “Don't you see for yourselves what the weather is like outside?” 189

I remember the commission asked me how to put all the cups and plates on the table. Then they asked, “What are they called?” I answered, “They're calleddishes.” A lot of things I answered. They try to ask you a lot of “trick” questions, like what's the difference between a bird and a plane?190

For Lyuda P., the procedure was mystifying:

I was six years old. They made me sit at a huge table. A lot of people were sitting there. I had studied first grade in a regular school. Then they came and got me and said to say “good-bye” to everybody and wave your hand. I was taken to the commission and answered two questions. I don't remember them now.191

The vospitatel' also found the procedure both intimidating and cursory. She highlighted for Human Rights Watch the extreme vulnerability of an orphan by recounting the experience of her own “healthy” son, whom she accompanied on the general pre-school evaluation administered to Russian children:

My own son was tested after kindergarten before going to school—all kids are tested. I was told they do the testing for four days. But they really conducted their test for one and a half hours. And of course parents and children are nervous. The questions are not always worded clearly. They ask questions about clothes, transportation, animals, and comparative questions. A child who could read a poem perfectly at home, may be silent in fear.192

Imagine, I was standing right there next to my child and he was still confused. I'm a pedagogue, myself, and I think the examiners should get involved in the world the children live in, observing and watching a kid. And then, only after that, decide. But instead, after only for an hour—they just cross out their lives! 193

Ruined lives: misdiagnoses by the commission

The staff of Russia's 252 baby houses and the volunteers who work with them know scores of children who have pending diagnoses as severe oligophrenia. They know them by face, by name, by age, condition and their real potential. There is a frantic air among some of these care givers and advocates to prevent the orphans from being transferred to psychoneurological internaty.

They also mourn the many they knew who could not be saved beforehand, as well as the children with severe congenital disabilities who are condemned to psychoneurological internaty. One exemplary case is that of the little girl with a cleft palate mentioned in the previous section of this report, who was rejected for corrective surgery. Because Alina could not talk, she was diagnosed as an imbetsil. Her case neatly depicts the ways in which the Russian system denies orphans with disabilities their most basic rights.

Human Rights Watch learned more about Alina in an interview with a volunteer from her orphanage who had followed her for more than a year. Alina was three years old when Theresa Jacobson met her. Her medical chart indicated the following conditions:

· Multitudinous developmental defects;

· Psychomotor delays, speech delays;

· Organic brain paralysis;

· Bilateral cleft palate and lip;

· Microcephalus;

· Premature birth.194

She took on the baby's case to try to get her cleft palate corrected, and possibly prevent her from going to an internat for the ineducable. Ms. Jacobson recalled the little girl's case with frustration and sadness:

Alina seemed to all of us quite bright. Her major problem was that she couldn't speak because of the huge crack in her palate. She basically grunted her way through life. Also, because of the huge crack in her palate, her harelip was so bad she had no upper lip. It was a huge gaping hole to her nose that turned into the hole for her mouth. When she would eat porridge, it would go up through her nose. She couldn't swallow. She was very underweight, and I think, malnourished. The saddest part, she had bright blue eyes. I'd tell herto come here and do things and she'd understand and do them. But she could only grunt.

I spent a lot of time trying to get surgery for her, and we went through several stages. First they said she had a congenital defect of the heart valve, and because of the risk that she would die under anesthesia, they couldn't do the surgery on her cleft palate. Then she was too underweight for the minimum requirement for surgery. She was only eleven kilograms at age five.

So it was just a vicious circle. Then, at one stage, I decided to get her heart condition evaluated at the Bakalev Heart Institute, and found that the valve problem had corrected itself. I had a heart surgeon who looked at her and said he'd come to do the facial surgery in case there was an emergency. We'd even been able to get a British facial surgeon interested. Then around this time I had to leave my volunteer work for personal reasons. Alina was returned to the orphanage with no explanation.195

According to others familiar with Alina’s case, the doctor responsible for her baby house was aware of her problem. But during an interview in Moscow with Human Rights Watch, Dr. Elena Petrenko made no sign of recalling the case. To our query about potential flaws in the Psychological-Medical-Pedagogical Commission procedures, she denied there that were problems and described the process as always taking place "in a very friendly atmosphere."196

She added, "It depends on the level of the baby's intellectual development. Age does not play any role. For example a baby has to put together four pieces of a picture...Also, the commission tries to see if the child thinks clearly."197

Contrary to some views of the commission as a vehicle for one-hour, snap decisions, the doctor underscored the active participation by the staff of baby houses in making this momentous decision in the orphan's life:

They really listen to us because we've been watching the children all along. We actually decide where the child goes and actually it's a very formal procedure. We discuss with them those kids we're not sure of, but it's the interest of the baby that takes priority. I don't see any potential for problems. The same commission comes every year. They know the hospitals. I think the interest of babies is number one.198

Later in the interview, Human Rights Watch again asked if the doctor recalled any cases in which she did not feel satisfied about the diagnosis. She repeated her conviction that the commission gave children the benefit of the doubt, a view that sharply diverged from the observations of doctors, other institutional staff and charity workers we interviewed:

No, we stand by the diagnoses. Actually the commission works in the interest of the babies, not against them. In fact they're given even better diagnoses so they can be put in a better orphanage, even if they find out later that the child cannot manage there.199

When asked specifically about how the baby house handled conditions such as cleft palate, the doctor's reply again contradicted the experience of many others interviewed for this report:

Actually, those babies who should be operated on, are operated on... What we do actually when we get babies with any conditions, we contact the medical institute and they fix up all the problems. If the baby is really sick he is sent to the hospital.200

The doctor may have been convinced that Alina was an imbetsil because her chart contained, rightly or wrongly, conditions such as “microcephalus” and “organic brain paralysis.” This of course only serves to illustrate the fact that imbetsily do not generally get corrective surgery.

A leading analyst of the Russian orphanage system, was however, plainly shocked by the doctor's statements and challenged their veracity. "There was grossmisconduct in that case of the child with a cleft palate and hare lip, who never got the surgery and ended up in an insane asylum."201

Most likely, with her difficulty in eating and speaking, Alina's condition worsened after her transfer, and it is this terrible deterioration of wrongly diagnosed children—not to mention correctly diagnosed children with disabilities—that distresses Russian child welfare experts. One baby house director told Human Rights Watch that it was so wrenching to see the babies from his institution decline after arriving in the Ministry of Labor and Social Development internaty, that he avoided going to them.

Ninety percent of what we developed with the children who we send there, is lost there. This is why we keep them here at our baby house till they're seven, eight years old, to keep developing them. But then comes the time. Even right now, we have some fine, intelligent children who have problems, but only physical ones.202

Dr. Airumyan's deputy director, Dr. Olga Y. Vassilieva joined our interview and quickly mentioned an eight-year-old boy named Misha.

There's a child here who is incontinent, but smart. He could work, say, as an accountant. If he goes to the regional internat, in the best case he'll be in a wheel chair. Most likely, he'll be bedridden.203

Three years ago they said they "lost three children," whom they regretted sending to the regional internat of the Ministry of Labor and Social Development. The stories of these and several other Russian orphans are recounted below by people who knew them in their baby houses.

TIMKA, 6

Timka was a little boy who had a defect in the spinal column, and the related complications because of it—paralysis, incontinence, etc. He was a nervous little boy who had difficulty with speech. Then at the age of five he started to speak normally, and he sang very well. He understood everything. He used towatch the American television show Santa Barbara on Russian television and would retell all the episodes to the staff! He had 100 percent potential for a useful life.

Then Timka went to the internat. After three to four months I saw him there. He was lying in bed—dressed only above his waist, lying on a rubber sheet. He recognized me and couldn't say my name. It shows there's no continuity for these children between our work here, and over there at the internat. That was three years ago.204

TASSIA, 5

Tassia was a little girl who had a spinal defect that caused the usual complications with movement and urination. But she could walk. And she would sing and take part in music here. Then she went to the internat three years ago, and there was a nurse who went to visit her there. Tassia asked the nurse to please take her back home here to the baby house. Now, last September (1997), the nurse went to see Tassia and saw that they only put her on the potty, and she just sits there.205



FEDYA, 5

Fedya was a little boy who was transferred to the internat in the same group with Timka and Tassia. He also suffered from a spinal defect that paralyzed him and he was incontinent. But he had potential for a useful life. He went to the internat three years ago.206



TOLYA B.

Tolya was a little boy from a baby house here in Moscow. He had a physical disability, but he could talk and reason. They diagnosed him as an imbetsil and whisked him away to an internat, where he just went downhill. That internat was one of the worst and it's since been closed.207

NINA, 8

This little girl only has light cerebral palsy in her legs and she is so bright. But Nina has been diagnosed as oligophrenic and unless something is done to change it, she is headed for a psychoneurological internat soon.208

On rare occasions, someone in the charity community manages to arrange to transfer a child who has been wrongly relegated to a psychoneurological internat, out to an orphanage within the Ministry of Education. Another volunteer with experience working in Moscow baby houses told Human Rights Watch of one such a child who was adopted:

SERIOZH C.

Seriozh came from a baby house here in Moscow and he had only a slight physical disability. But they said he would never walk and he was diagnosed as imbetsil and sent to an internat. Then an American family managed to adopt him from that internat and I hear he's doing really well—and speaking fluently! They rescued him from that place.209

Even in the extremely rare instance when a child is "rescued" from a warehouse existence, Dr. Olga Vassilieva stresses how difficult it is to overturn the discriminatory diagnosis after all. The case she cites again illustrates how the Russian state routinely fails the children in its care. The story also highlights the need for system-wide remedies, not merely private initiatives:

There was a girl in this region who is now eighteen, who started here in our baby house. Then her mother took her, and she was put into an orphanage in another region. Finally she ended up in a psychoneurological internat, even though she was only debil. She happened to have a good staff person who helped her there. Now she studies at a cultural college, and she even had her own exhibit of paintings! But it was so hard to cancel her diagnosis. It took two people to handle her case.210

Conclusion

At any given time in any year thousands of abandoned children in Russian state institutions are approaching the test that will determine to what extent their basic rights to education, health, and indeed life, will be observed. Those who fail due to real or purported disabilities face a fate similar to the unfortunate children remembered above. Their internaty, and the inhuman treatment within their walls, are described in the chapter ahead.

154 Human Rights Watch interview, Dr. Vsevolod Rybchonok, Moscow, March 6, 1998.

155 Human Rights Watch interview, Dr. Tatiana Moroz (not her real name), psychiatrist, Moscow, February 12, 1998.

156 Human Rights Watch received varied information from Moscow experts themselves concerning the rules and actual execution of a diagnosis on infants and children, underscoring the need for transparency in the Psychological-Medical-Pedagogical Commission. One expert told us that the diagnosis of oligophrenia (congenital retardation) cannot be made in the maternity ward, but can be made after one year of age. Volunteers working in baby houses and doctors who have examined medical records of institutionalized babies prior to and after adoption, have seen “oligophrenia” marked on files of children under the age of four. Human Rights Watch interview, Moscow attorney, October 14, 1998; Carole Hartigan, October 14, 1998; Western pediatrician, October 16, 1998.

157 Cox, Trajectories of Despair, p. 15.

158 Human Rights Watch interviews, February 15, 1998; March 5, 1998.

159 Human Rights Watch telephone interviews, Moscow, February-March 1998.

160 Human Rights Watch interview, Dr. Anatoly Severny, February 12, 1998.

161 Human Rights Watch interview, Valentina V. Terekhina, Ministry of Labor and Social Development, Moscow, March 6, 1998. The current Ministry of Labor and Social Development was earlier called the Ministry of Social Welfare.

162 Ibid.

163 Human Rights Watch interview, Valentina B. Chumichova, March 1998.

164 Ibid. Exchange rate as of March 1998.

165 Ibid. For further information, we were told to submit a written request to the Health Ministry.

166 Human Rights Watch interview, Svetlana R. Konova, March 1998.

167 Human Rights Watch interview, Lyubov A. Andreeva, March 3, 1998.

168 Ibid.

169 Human Rights Watch interview, child development expert, March 1998.

170 Human Rights Watch interview, child development expert, March 1998.

171 Human Rights Watch interview, Dr. Vsevolod Rybchonok, March 6, 1998.

172 Human Rights Watch interview, Dr. Anatoly Severny, February 12, 1998.

173 Cox, Trajectories of Despair, p. 15.

174 Ibid., p. 15.

175 Ibid.

176 Ibid.

177 Human Rights Watch interview, Dr. Mikhail M. Airumyan, March 5, 1998.

178 Human Rights Watch interview, March 6,1998.

179 Human Rights Watch interview, Sarah Philps, February 23, 1998.

180 Human Rights Watch interview, Dr. Tatiana Moroz, Feb 12, 1998.

181 Human Rights Watch interview, Valentina V. Terekhina, Moscow, March 6, 1998.

182 Ibid.

183 Human Rights Watch interview, Carole Hartigan, December 20, 1997.

184 Ibid.

185 Olga Alexeeva, Who Helps Children? On the Work of Charitable Organizations (Moscow: Charities Aid Foundation, 1994), p. 2; Human Rights Watch interview, vospitatel’, March 5, 1998.

186 Human Rights Watch interviews, March 5, 1998.

187 Human Rights Watch interview, PTU vospitatel', March 5, 1998.

188 Human Rights Watch interview, PTU vospitatel', March 5, 1998.

189 Human Rights Watch interview, Valeria M., March 5, 1998.

190 Human Rights Watch interview, Oleg A., March 5, 1998.

191 Human Rights Watch interview, Lyuda P., March 5, 1998.

192 Human Rights Watch interview, vospitatel', March 5, 1998.

193 Ibid.

194 Notes from medical record furnished to Human Rights Watch by Theresa Jacobson, March 13,1998.

195 Human Rights Watch interview, Theresa Jacobson, March 8, 1998. Eventually the little girl was sent to a Moscow psychoneurological internat and was located in November 1998.

196 Human Rights Watch interview, Dr. Elena Petrenko, March 2, 1998.

197 Ibid.

198 Ibid.

199 Ibid.

200 Ibid.

201 Human Rights Watch interview, child welfare analyst, March 7,1998.

202 Human Rights Watch interview, Dr. Mikhail Airumyan, March 5,1998.

203 Human Rights Watch interview, March 5, 1998.

204 Human Rights Watch interview, Dr. Mikail Airumyan, March 5, 1998.

205 Human Rights Watch interview, Dr. Olga Vassilieva March 5, 1998.

206 Ibid.

207 Human Rights Watch interview, Sarah Philips, March 7, 1998.

208 Human Rights Watch interview, Sarah Philips, February 23, 1998.

209 Human Rights Watch interview, Sarah Philips, March 7, 1998.

210 Human Rights Watch interview, Dr. Olga Y. Vassilieva, March 5, 1998.

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