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Educational integration of children with disabilities
Under the conditions of socio-economic transformations in Russia, the processes of social stratification are deepening, indicators of poverty and polarization of population groups in the social structure of society are growing in terms of income levels, as well as orientations towards various life support strategies, including the choice of higher education as a necessary condition for development and social mobility of citizens. At the same time, the alienation of a number of social groups from the opportunities to receive higher education is increasing due to unfavorable starting conditions, often determined not by learning abilities and individual efforts to acquire knowledge, but by multiple factors of social deprivation. Disabled people, in particular, pupils of boarding schools, occupy a special place among such social groups. Analysis of the accessibility of education for representatives of this group is an important task in the institutional regulation of social policy. In this chapter, we outline the prospects for studying the factors of access to education, consider the arguments in favor of integrated education, reveal the basic concepts and principles of educational integration, and also present some data from sociological surveys on the problem of teaching children with disabilities in a general education school.
The problem of access to education for children with disabilities in the context of research on social inequality
The analysis of disability in the context of education allows the problematization of social inequality in a new way, despite the fact that education has been seen as a means of achieving equality since the Enlightenment. On the one hand, the understanding of education as a public good is characteristic of the concept of a welfare state, which should provide its citizens with equal opportunities for access to social values. Arming people with knowledge, education helps them to take their rightful place in society, thereby helping to mitigate social inequality. On the other hand, sociological studies carried out in the West and in Russia since the 1960s have shown that education is more inclined to reflect and confirm existing inequalities than to contribute to its elimination. D.L. Konstantinovsky believes that the myth of equality of opportunity is one of the most attractive for a socialist state, representing an important part of the ideology of the Soviet period until a certain point, until sociologists began to refute it. In the 60s, a study was conducted by V.N. Shubkin, which demonstrated that Soviet society is by no means free from inequality in the education system, the transmission of statuses, and other phenomena of this kind that are also characteristic of other societies. Domestic researchers studied social stratification, the mechanisms of social mobility associated with the education system.
Projects carried out in the 1960s and 70s in a number of countries around the world demonstrated that social and family circumstances have the greatest influence on the results of schooling; this subsequently determines the level of income. The effectiveness of the educational process has been shown to be affected by the social background of students, which determines "the inequality in which children are placed by their home, their neighborhood, their environment." These and similar studies have sparked a debate about the need for integrated education for children from different racial groups and social strata. Some modern Russian sociologists are working in the same direction, emphasizing continuity and transmission through educational system those social class differences that exist outside of education. At the same time, the probability of obtaining a higher education is an indicator of social inequality.
British studies in the 1980s confirmed findings about social inequalities outside the school, and questioned why schools themselves tend to perpetuate and reproduce inequalities. And yet, improving the quality of teaching, creating a healthy social climate in the school and the practical orientation of schooling, as the researchers believed, could help children from poor families, as well as improve their performance for graduates of boarding schools.
The work of P. Bourdieu had a great influence on understanding the reproduction of inequality in education. According to Bourdieu, education is an instrument of symbolic violence, taking the form of classificatory conflicts, in which warring factions try to impose their view of the world, their classificatory schemes, their idea of “who (and for what reasons) should be considered as who” as the only legitimate ones. . In this and his later works, Bourdieu suggests looking for an answer to the classic question of sociology about the reproduction of social inequality in the education system and in other cultural institutions. Schools and universities relay inherently unequal socioeconomic conditions into varying degrees of endowment; therefore, universities that are nominally open to everyone actually get only those who have certain habits, who have assimilated the necessary social and cultural dispositions.
From about the mid-1960s, it became clear to sociologists that disabled children, especially graduates of boarding schools, in the education system join the least qualified socio-professional groups, occupying low-status positions that do not require quality training or abilities, bring low income and have the lowest prestige. The acquisition of quality secondary and higher education by children with disabilities is hampered by multiple structural constraints that are characteristic of societies with a complex stratification structure. In sociological analysis, inequality of access to social benefits is defined by the concept of deprivation associated with poverty and other forms of social disadvantage. In the 1970s in Great Britain, studies led by M. Brown and N. Madge demonstrated the difficulty of identifying and even defining deprivation, which appears in various forms. The concept of “multiple deprivation” was introduced, meaning the intersection and overlap of factors of unequal access to various kinds of socially approved values.
The phenomenon of "transferable deprivation" is close in meaning to the concept of the cycle of deprivation, introduced into circulation in the study of the so-called "culture of poverty" by US sociologists. Scientists of this direction believed that the shortcomings of education lead to the formation of a generation, which in turn reproduces the same shortcomings that were characteristic of their parents. The concept of a culture of poverty was introduced by O. Lewis to refer to the lifestyle of slum dwellers: in such an environment, children are socialized into the appropriate culture of their parents and form appropriate claims and lifestyles; in this vein, for example, the dependent attitudes of the poor are discussed. In the 1990s, the problem of poverty, as the most pressing aspect of social inequality, became the subject of research by a number of Russian sociologists.
Foreign researchers have devoted their research to the problem of intelligence and its assessment in the education system. Since in modern Russia there is a practice of teaching disabled children not only in boarding schools, but also in public schools, in such situations classificatory conflicts, both of an identification nature and in relation to academic performance, are clearly manifested. Since the responsibility for learning outcomes rests with teachers, as a result, most attention is paid to the best, most capable, and disabled children, being “stepsons and stepdaughters” of the education system, are deprived of the privilege of teacher attention and are forced into the social and academic ranks. school hierarchy. In the analysis of the problems of teaching disabled children in mass schools, it is also productive to refer to the theories of language codes, organizational development and the hidden curriculum, as well as cultural reproduction.
It is obvious that the quality of human resources in society depends not only on the quality of academic training, but also, among other things, on the social experience accumulated by the individual, social competence, the ability to social adaptation and development of the individual. This quality in policy documents UNESCO called the functional literacy of the population. The concept of functional illiteracy, which manifests itself in "the inability to use changing situations and manage life circumstances", can be applied to the analysis of the situation of children with disabilities. From our point of view, the growth of functional illiteracy can be stopped and reduced if the task of expanding the access of socially vulnerable groups of the population to social benefits and prestigious channels of socialization is carried out, thereby regulating the dynamics of the development of the socio-professional structure of society and preventing the marginalization of large social groups. In order to improve the functional literacy of children with disabilities, programs should be developed civic education and personal growth using modern active teaching and training methods. In turn, this will improve the social competence of children with disabilities, form the motivation to receive higher education. Such initiatives can only be successfully developed if the appropriate regulatory and institutional conditions are in place. The normative conditions include the development of rights and guarantees, and the institutional conditions include the formation of such an educational environment in which the principles of tolerance, integration and partnership would be developed.
Theory and practice of inclusive education of children with disabilities abroad
In a number of countries around the world, starting around the 1970s, a package of regulations has been developed and implemented to expand the educational opportunities for people with disabilities. The implementation of such laws and other documents is expressed in a set of positive discrimination measures. This is a system of privileges in society for obtaining equal opportunities for a discriminated group. In order for the positive discrimination system to function, so-called affirmative actions are applied - measures to promote minority representatives by reducing the privileges of the majority group. Politicians, sociologists, activists of public organizations today are discussing the issue of expanding the access of socially vulnerable groups to high-quality secondary and higher education. In this regard, they talk about the formation of a system of political and economic influence on the student body high school, including measures to prepare people from socially vulnerable strata to enter a university and create the most favorable environment in the process of their education (we are talking, in particular, about people with disabilities, representatives of migrant families, racial minorities, the poor, the rural population) .
In the recent history of the educational policy of the United States and Europe, several approaches have been developed: school desegregation, widening participation, integration, mainstreaming, and inclusion. Mainstreaming refers to such a strategy when students with disabilities communicate with their peers on holidays, in various leisure programs, and even if they are included in mass school classes, then primarily in order to increase their opportunities for social contacts, but not to achieve educational goals. Integration means bringing the needs of children with mental and physical disabilities into line with an education system that remains generally unchanged: mainstream schools are not adapted for children with disabilities (and students with disabilities, attending a public school, do not necessarily study in the same classes as everyone else). other children). Inclusion is the most modern term, which is interpreted as follows: it is the reform of schools and the redevelopment of classrooms in such a way that they meet the needs and requirements of all children without exception.
The approaches mentioned are based on several theoretical perspectives: the theory of social justice, human rights, the theory of social systems in relation to human development, social constructivism, information society, structuralism, social criticism. If we talk about the theory of systems in the aspect of the education of disabled people, then we should mention the works of W. Bronfenbrenner, who showed that human development is a process in which a maturing, growing individual acquires an increasingly broad, differentiated and adequate view of the environment. This is due to the fact that over time, children are included with great interest in an increasing number of activities and contacts, changing their social environment. Therefore, it would be wrong to control the behavior of students, rather, it is necessary to develop self-management skills in them.
Another concept in the same vein is presented by Brim, who argues that each person actually has their own curriculum, their own rules, and we would never be able to participate in any group activity if we did not learn the rules of the group. Likewise, students must - for better or worse - learn how to survive in school, and teachers must teach them the social and organizational structure of the school. However, teachers must recognize that in schools students are being asked to behave in ways they would not do outside of school - at home or on the street, in the community. No matter how hard the educators and teachers try to “domesticate” the space of the boarding school, it still remains “official”, not replacing a home and family, but also not providing students with wide opportunities for social adaptation to an independent life after school. Thus, the very nature of the school is a problem for students with disabilities. In conditions special education we are faced with the dilemma of helping students adjust to school, survive in school, while at the same time helping them develop the self-management and decision-making skills they will need in adult life in society.
In the United States, from 1875 to 1914, compulsory school education, in this regard, classes were formed for children who were considered mentally handicapped, as well as for those who were considered "incorrigible for their behavior", deaf or physically disabled. During this same period, the National Education Association created the Department of Special Education. IQ tests evolved, immigrants flooded in, an organized labor force grew, and psychological theories developed. All these factors influenced the school system, which developed the principles for measuring and defining individual differences and potential. In the 60s and 70s, voices of criticism are heard against the school, which is to blame for the failures of the students. Jane Mercer's research emphasized that each social system gives a person new definitions, so disability is a product of social arrangements.
In 1962, Reinolde proposed and then I. Deno improved the concept of a cascade of services. This cascade, or continuum, provides a model for designing services to meet the needs of individual students and ranges from hospital and home schooling to special schools, special classes, and finally regular mainstream school classrooms. The Education for All Children with Disabilities Act 1977 lists appropriate additional services needed to assist children with disabilities receive special education: transportation, speech therapy, audiology, psychological services, physical therapy, recreation, occupational therapy, early identification, medical services, school doctor or nurse, school social worker, psychologist, social work services for children and families, parent counseling and training. In the 1990s, the United States passed the Education for All Children with Disabilities Act, with its principle of individualized learning, as well as the Individuals with Disabilities Education Act.
M. Reynolds writes the history of special education as a gradual progress towards the inclusion of students with disabilities in the mainstream school system - in relation to the location of schools, selection principles. This researcher argues that improved learning in mainstream school settings will lead to a reduction in the number of children sent to special classes and special schools, and that in many ways the programs provided for students with various types of disabilities do not differ from the programs that so-called children study. in a risk situation. In addition, he believes that today in American society there is a steady increase in interest in restructuring schools so that they can include all students.
Thus, we are talking about inclusion, or inclusion, a concept relating to the principle of organizing learning, in which all students study together with their peers in a school in their place of residence. The concept of inclusion was introduced into the theory and policy of contemporary education through the work of Ms. Madeleine Will, former Assistant Secretary of State for the US Department of Education. Will argues that special educators should question the effectiveness of pull-out services for many students with disabilities. These are services that remove students from classes at the time when classes are going on there. First of all, it was about the fact that children who were difficult to teach were sent to special classes, thereby several groups intersected in the population of schoolchildren in special institutions - children with disabilities, with learning difficulties (with "pedagogical neglect" or mental retardation) and with difficult behavior (for example, with attention deficit hyperactivity disorder). In addition, the researchers were concerned that children, once in a special institution, from there never returned to a public school.
The principle of inclusive education is that the diversity of needs of students with disabilities should be matched by a continuum of services, including an educational environment that is the least restrictive and the most inclusive. This concept marks the next step in comparison with integration and mainstreaming. Inclusive schools educate all children in classrooms and schools in the community. This principle means that: 1) all children must be included in the educational and social life of the school where they live; 2) inclusion means including someone from the beginning, not integration, which means bringing someone back; 3) the task of an inclusive school is to build a system that meets the needs of everyone; 4) in inclusive schools, all children, not just children with disabilities, are provided with support that allows them to be successful, feel safe and appropriate.
Inclusive schools are aimed at fundamentally different educational achievements than TC, which is most often recognized as education. The purpose of such a school is to give all students the opportunity to have the most fulfilling social life, the most active participation in the team, the local community, thereby ensuring the most complete interaction and care for each other as members of the community. This value imperative clearly shows that all members of the school and society are interconnected, and that students not only interact with each other in the learning process, but also reinforce each other when they make decisions about processes in the classroom.
Teachers working in schools on the principles of inclusion assume the following responsibility: to teach all students who are assigned to them; make flexible decisions in teaching and monitor them; provide training in accordance with the typical curriculum by adapting the details when children's progress differs from what was expected; be able to teach to a diverse audience; seek, use and coordinate support for students requiring more intensive services than those provided by their peers. Researchers talk about the "experience of transformation" experienced by educators who have become inclusive teachers. These are gradual transformations that involve teachers who want to:
1) interact with students who are different from their peers;
2) master the skills necessary for the education of all students;
3) change their attitudes towards students who are different from their peers.
Those teachers who already have experience working on the principles of inclusive education have developed the following ways of inclusion:
1) accept students with disabilities "like any other children in the class";
2) include them in the same activities, although set different tasks;
3) involve students in cooperative learning and group problem solving;
4) use active and participatory strategies - manipulations, games, projects, laboratories, field research.
Inclusive learning communities are changing the role of the teacher in many ways. Lipsky and Gartner believe that teachers help to activate the potential of students by collaborating with other teachers in an interdisciplinary environment without artificially distinguishing between special and mass educators. Teachers are involved in a variety of interactions with students, so that they get to know each individually. In addition, teachers are involved in extensive social contacts outside the school, including with learning resources and parents.
Pinnel and Galloway give the following system of principles for the development and management of the classroom in line with inclusive education: teachers recognize that students make a significant contribution to the learning process; learning occurs only when students feel the need to change or know about something; learning is a holistic process, not a set of separate pieces of information or skills; teachers recognize the power of classroom social context over learning; teachers develop a personal understanding of learning and development; teachers are involved in what is happening in their classrooms and cannot remain indifferent to it.
Discursive justifications for inclusive education
Analyzing the main arguments in understanding new trends in the development of education in the West, Alan Dyson proposes to single out the following types of discursive justification for inclusion. The discourse of rights and ethics is fixed in the sociological reflection of the reproduction of inequality in a mass school in the 1950s-1970s, criticism of special schools in the 1980s, modern studies of education in the interpretive and critical paradigms. According to their findings, special education only appears to protect vulnerable children by providing them with educational and health services. In fact, special education, by segregating disabled children into separate schools, serves the interests of the wealthy members of society, keeping and rationalizing the further marginalization of those whom it supposedly helps. The special education establishment is creating an alternative platform for educating problem children, whose demands and needs would otherwise bring about the revolutionary changes that are so needed in the mainstream school. Special education creates an area where teachers, doctors, psychiatrists, and other experts can exercise power and maintain privileged positions. It legitimizes the treatment of children and adults with disabilities as deviants, preventing the slightest restructuring of the social order, and thus contributes to their further oppression. Thus, the placement of a child in a special school is inextricably linked to issues of rights and justice.
The Discourse of Efficiency and Efficiency - A Study of Economic Costs and Academic Performance. These works refer to the 1980-90s and demonstrate the advantages of integrated education in terms of benefits, benefits, achievements. In developed countries, schools receive funding for children with special needs, so they are interested in increasing the number of students officially registered in this way.
Political discourse uses such key terms as struggle, movement, interests, individual and collective action. This includes publications from the 1990s on the problem of self-organization of parents of children with disabilities, the social activity of adults with disabilities and those who advocate for their rights, for the expansion of life chances and against the medicalist approach to social protection and rehabilitation. Pragmatic discourse is of particular importance today, when a certain consensus has already formed in the academic environment, and the principles of inclusive education are set forth not only in scientific journals and monographs, but also on the pages of textbooks, in practical guides for teachers, social workers, physicians, other specialists, and also for managers and politicians. Such developments, based on empirical research and the generalization of pedagogical experience, lead to the understanding that methodological and organizational changes carried out in the interests of children with learning difficulties, under certain conditions, can benefit all children. In other words, the inclusion of children with special needs in the educational situation of the mainstream school can be a catalyst for change that can significantly improve the learning environment for all.
At present, it is no longer just the rationale for the importance of inclusive education that is being updated - a critical mass of arguments has already been accumulated abroad in favor of such a principle of organizing education for people with disabilities. Now it is important to have a dialogue of inclusions, so to speak, allowing practitioners and researchers to consider problems and perspectives, differences and similarities, opportunities and barriers that exist in their real experience. The real institutional opportunities to improve the accessibility and quality of higher education for such a category of applicants as the disabled, first of all, include legal benefits for admission to secondary and higher educational institutions, benefits for the material support of students, as well as legal norms on the autonomy of universities. Legislation regulating the receipt of higher education by Russian citizens and the legitimacy of special conditions for entering a university for certain categories of applicants is represented by a number of normative documents, primarily by the Law of the Russian Federation "On Education", adopted in July 1992, which since then has been amended and supplemented several times. Invariant benefits are those that relate to socially vulnerable groups of the population, in respect of which positive discrimination should be carried out, including “disabled children, disabled people of groups I and II, who, according to the conclusion of the institution of the State Service for Medical and Social Expertise, are not contraindicated in studying in the relevant educational institutions...
However, in 1999-2001, Saratov State Technical University (SSTU), for example, received, using benefits, only from 0.8 to 2% of applicants from the entire enrollment. This indicates, among other things, the low level of training of socially vulnerable groups and the weakness of their motivation to receive higher education. It should be noted that the dynamics of the recruitment of applicants from socially vulnerable groups, including those entering on preferential terms, are not actually taken into account in universities. Such statistics in Russia are not taken into account in the rankings of universities, in contrast to the indicators of the competition and the amount of extrabudgetary funds, while in the UK, for example, on the number of students representing the social groups of the poor, migrants, disabled people, as well as on the availability of programs to prepare these applicants for admission the amount of targeted budget financing depends on the university.
Problems and Prospects of Educational Integration of Disabled Children in Russia
In many post-socialist countries, educational policy is trying to abandon the system of special schools. The number of children in specialized boarding schools in Eastern Europe is declining, while the number of special education students in mainstream schools is growing. Differences in economic and political development states of this region influence the pace and content of the integration process. For example, in Bulgaria the implementation of the law on integrated education (1995) was temporarily suspended due to the difficult economic situation, while in Lithuania a stable process of integration has been going on since 1991. In a number of countries, there is growing concern about the haste of integration, as children are not receiving adequate attention and training. In turn, in some countries, the decrease in the number of children in special schools indicates the collapse and extremely difficult situation of the special education system (Moldova, Kyrgyzstan). It should be noted that in a number of countries the reduction in the number of children in special schools occurs against the background of a decrease in the number of the child population as a whole. As for Russia, the number of children officially receiving disability benefits has increased dramatically: from 155,000 in 1990 to 454,000 in 1995 (1.3% of the total number of children). It is possible that some children with mental or physical disabilities are not included in the statistics and do not have access to education at all. In our opinion, the obstacles to integration here are the recession in the economy and the lack of financial resources; the inertia of state institutions, the interest of the administration of these institutions in maintaining the current situation, the medicalist approach to the classification of special needs inherited from earlier times, general and professional intolerance.
The transition to inclusive education in the domestic context, in principle, was already predetermined by the fact that Russia ratified the UN Conventions in the field of children's rights, the rights of people with disabilities: Declaration of the Rights of the Child (1959); Declaration on the Rights of the Mentally Handicapped (1971); Declaration on the Rights of Persons with Disabilities (1975); Convention on the Rights of the Child (1975). But in order for Russia to become a civilized country with a civilized education, it is necessary not only to adopt a law on special education, or on the education of persons with disabilities, but also to have a favorable public opinion on this issue, as well as create institutional conditions for the implementation of the rights of persons with disabilities. The education system in modern Russia is undergoing profound changes, various educational institutions are being transformed as a result of government reforms and under the influence of a market economy. At the same time, the values of social inclusion and integration are on the agenda, although public opinion on this issue is far from homogeneous.
Today, there are various forms of assistance in obtaining higher education for various socially vulnerable groups of the population: legislative regulation of the conditions for obtaining higher education, financial support, information support, social rehabilitation, positive discrimination. All these forms are at different stages of their development and have varying degrees of effectiveness. The bill of the Russian Federation “On the education of persons with disabilities (special education)”, which has been awaiting adoption by the President of the Russian Federation since 1996, establishes the possibility of teaching disabled children in a public school, and the Report of the State Council of the Russian Federation “Educational policy of Russia at the present stage "(2001) already speaks of the priority of integrated (inclusive) education of children with disabilities: "Children with health problems (disabled) should be provided by the state with medical and psychological support and special conditions for education in exceptional cases - in special boarding schools. Special education, which includes students with special needs, disabilities, is experiencing severe shocks due to funding cuts and structural changes. social role institutions such as boarding schools for children with developmental disabilities are being reassessed.
Special education, on the one hand, creates special conditions for meeting the needs of students in medical and pedagogical services, and on the other hand, it hinders the social integration of disabled people, limiting their life chances. The humanistic alternative is integrated or inclusive (joint) education, which can significantly reduce the processes of marginalization of children with disabilities. Inclusive education in the process of its implementation may face not only the difficulties of organizing a so-called barrier-free environment (the presence of ramps, a one-story school design, the introduction of sign language interpreters into the staff, the refurbishment of common areas), but also social difficulties, consisting in widespread stereotypes and prejudices including the willingness or refusal of teachers, schoolchildren and their parents to accept integration.
Of particular relevance today is the study of public opinion on the problems of accessibility of higher education and ways to solve them. The researchers set the task to find out what are the views of schoolchildren, students, their parents, teachers, employers, managers and teachers of state and non-state universities, employees of state and non-state employment services about the differences in the quality of higher education (including bachelor's, master's, postgraduate studies in state and non-state universities) and in the opportunities to receive education of different quality. “There is growing concern in the community that students with low incomes, or those who are disadvantaged by remoteness or disability, are less likely to get a place in a university or continue their education later. Moreover, if young man If someone who is struggling financially still manages to get into a university, the choice of course of study or the degree obtained at the end of the course may be largely determined by the ability to pay for education. ... about some positive examples when regional administrations organize training for young people who were unable to enter universities due to financial difficulties or the remoteness of their place of residence. At the same time, student surveys record the opinion that “the opportunity to get a higher education most often depends on family income, on special agreements with the leadership of the university or faculty, or on the chance to get an education in a specialized gymnasium, after which it is much easier for young people to enroll in institutions."
In our research (D.V. Zaitsev, P.V. Romanov - survey of teachers, N=276, survey of parents, N=260, 2001-2002; I.I. Loshakova - survey of high school students, N=250, 2000-2001 ) we found out the attitude of teachers, secondary school students and their parents to the possibility of joint education with disabled children who have difficulties with movement, hearing, speech or vision impairments, mental retardation. It must be said that about 1/3 of the high school students we interviewed (N=250) never noticed the presence of disabled children in our society, about 40% saw them on the street, about 20% knew each other, but did not communicate, and about 10% had close contacts.
The analysis showed that the closest contacts, characterizing the relationship between good friends, comrades and relatives, are carried out between the students surveyed and children with disorders of the musculoskeletal system (12.4%) and with disabled children experiencing mental development disorders (12 ,9%). More rare among our respondents were contacts with those children who have speech, hearing or vision impairments (9.1%). And among those whom schoolchildren have only seen on the street, there are more disabled children with outward signs of disability (40.5%). Thus, about 70% of the respondents showed varying degrees of awareness of the problems of disability in children. The fact that only about 1/3 of the surveyed high school students had the opportunity to meet a disabled child, in our opinion, suggests that the opportunities for such acquaintance are small, and partly they are set by the institutional framework, in particular, the organization of the education system.
Rice. 1. How would you react to the fact that children with disabilities will study with you? (Senior students, N=250)
As can be seen (Fig. 1), the greatest tolerance for being in the same class is shown by our respondents in relation to children with disorders of the musculoskeletal system, and they are less tolerant of those who have hearing and vision impairments. The lowest level of tolerance was revealed in relation to children with intellectual disabilities - almost half of the lyceum students expressed the wish that they study in a separate school. It is quite obvious that in this case, a deeply rooted stereotype is revealed, the stigma of mental retardation, constructing serious barriers to the integration of both children and adults into society.
Despite the manifestation of intolerance towards certain forms of disability, the vast majority of respondents are convinced that it is necessary to take special actions in order for people with disabilities to become equal in rights (85%). As in the answers to the previous questions, such views are more typical of those who have personal experience of dealing with people with disabilities. More than half of these respondents believe that it is necessary to help people perceive people with disabilities without prejudice, and almost 40% of those surveyed believe that people with disabilities should be helped to live and work in conditions that would not restrict their movement - sound signals at traffic lights, entrances to shops for wheelchairs, accessible public spaces and transport.
It should be noted that about 70% of the interviewed parents (N=260) consider the educational integration of children with lesions of the musculoskeletal system to be possible, while less than 40% of respondents among teachers (N=276) are inclined to this opinion. Parents are also more tolerant of the idea of educational integration of children with other developmental disabilities: the number of those who have a positive attitude towards such an opportunity for children with speech, hearing and vision impairments is 16% higher than the number of teachers who agreed with this option (36% and 20%, respectively). ). Approximately eight out of ten parents do not object to the fact that disabled people with musculoskeletal disorders study in the same class as their children, while only 16% of teachers would agree to teach in such a class. Every second teacher will need retraining if the educational integration of children with disabilities does take place on a wider scale than it is happening now.
And about 1/5 of the teachers consider themselves quite prepared for such a situation, at least they do not expect any special changes in their professional status, career or in their own qualifications. The opinions of parents and teachers agreed on what consequences they expect from the integration of children with disabilities into a mainstream school: more than 2/3 of the respondents (73% and 69% respectively) believe that this will allow students to become more tolerant, learn to help each other and care, although conflicts between children are not excluded (every fifth parent and every fourth teacher are inclined to this opinion). Opinions about the impact of integration on education were distributed almost symmetrically: 10% of teachers and 22% of parents expect the quality of education to increase, while 21% of teachers and 13% of parents fear the opposite.
It is interesting that the number of those who associate integration processes with the growth of democracy is significantly larger among parents than among teachers, although in general this connection is quite clearly explicated by both groups of respondents (62% and 45%, respectively). Answering the question about what hinders the educational integration of disabled children today, parents and teachers were in solidarity on a number of positions. In the first place, all respondents put the imperfection of the environment, including the features of architecture and design, transport and other elements of the physical space, but for teachers such factors as the lack of relevant educational programs, their own qualifications and, of course, funding, as well as the lack of development of appropriate regulatory support , - are of greater importance than for parents (Table 1).
Table 1
What hinders the integration of disabled children into mainstream schools? (Parents N=260, teachers N=276)
It is obvious that most schools and universities are not ready to meet disabled applicants: there is neither an equipped environment nor special programs designed for such training. After all, equal opportunities for education do not at all exclude, but, on the contrary, involve the creation of a special educational environment for the disabled (a personal mentor-assistant, special elevators and transporters in all educational institutions, specialized keyboards for people with visual impairments or physical disabilities). Only in some universities there are centers for teaching students with disabilities.
disabled inclusive education integration
We discussed a number of approaches to the analysis of inequality in education, which is expressed, in particular, in the processes of social exclusion of persons with disabilities. The concepts and principles of the new philosophy of inclusive education, in our opinion, can be useful in the domestic practice of educational integration, the data of sociological surveys make it possible to orient politicians and subjects of the education system in the possible difficulties and prospects of teaching disabled children in a general education school.
The results of the surveys show that social attitudes towards educational integration depend on a number of factors, among which the most significant is the experience of interacting with people with disabilities in everyday life. The most significant differences in opinions are between those respondents who have never seen disabled people or only met them on the street, and those who have relatives or acquaintances of disabled children. This is another argument in favor of the fact that integrated education today can rightfully be considered one of the priorities of the state educational policy in Russia. At the same time, there are a number of objective obstacles to such a reform of the educational system, among which a significant place is occupied by the unsuitability of the school environment, the unpreparedness of teaching staff and the inadequate financing of the education system.
Today, this topical issue is not discussed enough, although some educational institutions are acting ahead of the curve, anticipating the centralized reforms that are just around the corner. According to the Ministry of Education of the Russian Federation, despite economic and social difficulties, work is underway in the system of higher institutions to create conditions for the accessibility of higher professional education for people with disabilities. But so far, unified standards for organizing educational and rehabilitation processes have not been developed, mechanisms for logistical, social, psychological, pedagogical, personnel and rehabilitation support have not been developed. It is necessary to approve the state standard for the vocational rehabilitation of disabled people and organize a system of special training and retraining, advanced training of teachers in the context of integrated education. Obviously, universities should develop more active activities to ensure the accessibility of higher education for the disabled, create a barrier-free environment and develop new learning technologies. To this end, a concept of a federal system of integrated secondary and higher vocational education for disabled people should be developed, as well as appropriate legal and regulatory support for vocational education for disabled people and recommendations for compiling the staffing table for schools and universities where disabled people study.
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“Every person, regardless of the state of health, the presence of a physical or mental disability, has the right to receive an education whose quality does not differ from the quality of education received by healthy people.”
(The concept of integrated education for persons with disabilities (with special educational needs)
The problems of special education today are among the most urgent in the work of all departments of the Ministry of Education and Science of the Russian Federation. This is due, first of all, to the fact that over the past decades in Russia, for various reasons, the number of children with disabilities (HIA) has been growing rapidly. and psychological climate in the family. Sad statistics show that the health of children from birth to school entry does not improve, but worsens, which negatively affects the process of assimilation of the school curriculum. The education of such children provides for the creation of a special correctional and developmental environment for them, providing adequate conditions and equal opportunities with ordinary children for education within special educational standards, treatment and rehabilitation, education and training, correction of developmental disorders, social adaptation.
Therefore, in recent years there has been an update of the education system, convergence of special and general educational institutions, a change in the attitude of society towards children with disabilities and the questions of the conditions for organizing their education and upbringing in the future naturally arise. The focus of the pedagogical community has become the issue of integration, that is, joint education of normally developing children and children with disabilities.
As you know, children with disabilities include children:
Hearing impaired (deaf and hard of hearing);
Visually impaired (blind and visually impaired);
With severe speech disorders;
With disorders of the musculoskeletal system, including cerebral palsy;
With mental retardation;
with intellectual disability,
Other health restrictions (pronounced disorders of the emotional-volitional sphere, early childhood autism, complex disorders).
These defects may have different quality and severity.
Currently, the focus is on integration - the process of teaching children with disabilities in educational institutions general type. Integrated education involves the mastery of a child with disabilities with the knowledge, skills and abilities and in the same time frame (or close) as normally developing children in accordance with the state educational standard.
Integration is a natural stage in the development of the system of special education, associated in any country of the world, including Russia, with a rethinking by society and the state of its attitude towards children with disabilities, with the recognition of their rights to provide equal opportunities with others in various areas of life, including education. According to well-known domestic scientists (N. N. Malofeeva, E. A. Strebeleva, N. D. Shmatko, L. M. Shipitsyna and others), the main direction of integration processes in our country is the convergence of general and special education systems at all its steps (preschool, general and vocational schools).
The domestic concept of integrated learning is based on three main principles of integration:
early correction,
Mandatory correctional assistance for every child,
Justified selection of children for integrated education,
The first principle is early detection of abnormalities - requires the creation of legislative formalization of the system of early assistance. This system must necessarily include a complex of medical, social, psychological, pedagogical and defectological specialists. After all, early detection of violations and carrying out corrective work from the first years of life makes it possible to achieve fundamentally different results in the development of the child. From 15-20% to 100% of intellectually intact children with various developmental disabilities are able, thanks to early corrective assistance, to subsequently successfully study in a public school.
The second principle is providing medical, psychological and pedagogical support for each integrated child. Even when a high level of psychophysical and speech development is reached, which allows the child to study in mass preschool educational institutions, he retains special educational needs associated with one or another developmental deviation, which must be satisfied. It is necessary to select adequate forms of joint upbringing and education for each child with HIA, taking into account the level of his psychophysical and speech development.
The third principle is reasonable selection of children for integrated education. Recognizing the importance and significance of integration as an innovative process in the education system, it is important to note the negative trends associated with the impossibility of integrating all children into a wide socio-cultural space.
In the process of implementing integrated education, the following integration models are distinguished:
Permanent full
Permanent incomplete
permanent partial
episodic
Let's give a brief description of them.
Permanent full integration involves teaching a child with one or another developmental disorder on an equal footing with normally developing children in the same preschool groups. This model can be effective for those children whose level of psychophysical and speech development corresponds to or approaches the age norm and who are psychologically ready for joint learning with healthy peers. Full integration can be organized in different types of institutions (mass institutions; mass institutions implementing integrated education; combined institutions).
Permanent incomplete integration can be effective for those children whose level of mental development is somewhat below the age norm, who need systematic and significant corrective assistance, but at the same time are able to study together and on an equal footing with normally developing peers in a number of subject areas, and also spend most of their time with them. extracurricular time. Permanent, but incomplete integration can be useful for preschoolers with different levels of mental development, but without concomitant disorders. The meaning of such integration is the maximum use of the full potential of the child already available and quite significant opportunities for communication, interaction and learning with normally developing children. Permanent but incomplete integration can be organized in all types of preschools.
Permanent Partial Integration can be useful to those who are able, along with their normally developing peers, to master only a small part of the necessary skills and abilities, to spend only part of their study and extracurricular time with them. The meaning of permanent partial integration is to expand the communication and interaction of children with disabilities with their normally developing peers. Such a model of integration can be provided in preschool institutions of a combined type, which have both regular groups and special groups, as well as in those mass schools where special classes are opened for children with a certain developmental disability.
With partial integration, all pupils of the special group, regardless of the level of development achieved, unite with their normally developing peers at least 2 times a month to conduct joint activities, mainly of an educational nature. The meaning of partial integration is to create conditions for acquiring the initial experience of communicating with normally developing peers. This integration model can be implemented in preschool institutions of a combined type, which have both groups for normally developing children and special groups, as well as in public schools where special classes are open.
Next integration model "episodic" , focused on special preschool and school institutions that are limited in their ability to carry out targeted work on the upbringing and education of their pupils together with normally developing children. The meaning of episodic integration is the purposeful organization of at least minimal social interaction of children with severe developmental disabilities with their peers, overcoming those objective restrictions in social communication that are created in the conditions of special (correctional) institutions where only children with disabilities study.
Analysis of N.N. Malofeeva, N.D. Shmatko allows as one of the promising species educational institutions that implement integrated education for children, single out an institution of a combined type. It is in these institutions that it is possible to create both ordinary, and special, and mixed groups of children, which makes it possible to carry out all forms of integration, selecting for each child the necessary qualified special pedagogical assistance, to establish genuine interaction between teachers of general education schools with speech pathologists. Groups are created in a combined institution for children with intellectual disabilities, with mental retardation (MPD), with severe speech disorders, musculoskeletal disorders, etc.
However, it should be noted that the effective implementation of integrated education for children with disabilities requires further cooperation between representatives of government, science and practitioners.
Literature:
1. Big Russian Encyclopedic Dictionary. - Great Russian Encyclopedia, 2007. - 1888 p.
2. Defectology. Dictionary-reference book / ed. B.P. Puzanov. - M.: Pedagogy, 1996. - 236 p.
3. Volkova L.S. Some problems of integrated education in Russian defectology at the present stage / L.S. Volkova, N.E. Grash, A.M. Volkov // Defectology. - 2002. - No. 3. - S. 3-8.
4. Malofeev N.N. Basic models of integrated learning / N.N. Malofeev, N.D. Shmatko // Defectology. - 2008. - No. 1. - S. 71-78.
5. Malofeev N.N. Integration and special educational institutions: the need for change / N.N. Malofeev // Defectology. - 2008. - No. 2. - S. 86-93.
6. Nazarova N.M. The concept of integration in special pedagogy // Conceptual apparatus of pedagogy and education. - Yekaterinburg, 1998. - Issue. 3. - S. 262.
7. Nikitina M.I. The problem of integration of children with special needs // Innovative processes in education. Integration of Russian and Western European experience: Sat. articles. - St. Petersburg, 1997. - Part 2. - S. 152.
8. Kutepova E.N. Experience of interaction of special (correctional) and general education in conditions of inclusive practice // Psychological science and education. - 2011. - No. 1. - P.104.
9. Shipitsyna, L.M. Excursus into the history of integration / L. M. Shipitsyna // Special Pedagogy / ed. M.N. Nazarova. - M.: Academy, 2000. - S. 355.
I Introduction
Speaking of integration, we are talking about the possibility for a person with serious developmental problems - in our case, a disabled child, or a special child - first of all, to live normally in a family, to study normally (and subsequently to work), as well as about the system special measures - rehabilitation, which allows the first and second.
The state is quite inertial, therefore, the sphere in which there is a shortage of services must necessarily be filled by the efforts of the third sector. The basis for integration should be a legislative framework that will ensure a reasonable state policy in this area and the opportunity for non-governmental organizations to provide scarce services. Are these conditions fulfilled in Russia?
The legislative base for integration has been built. The executive branch, as will be shown below, ignores the adopted laws. As a result, a gap is formed between the rights of a disabled child to development, education and rehabilitation enshrined in laws and the actual lack of their implementation.
In this situation, however, the integration infrastructure is developing rather actively - so far, mainly at the expense of non-governmental organizations; this infrastructure is actively in demand, the services provided in it are extremely scarce.
However, decisive shifts can only occur when the executive branch actually starts to implement the laws.
II. How the state ensures integration (the legislator is “for”)
International Documents
The Constitution of the Russian Federation (clause 4, article 15) declares the primacy of international law, and Russian legislation in the relevant area should be based on international treaties signed by Russia and other international acts containing generally recognized principles and norms of international law. Let us briefly list the main international documents and their corresponding articles and sections, which can be conditionally considered a necessary minimum of this kind in the field relating to the rights and life arrangements of children with disabilities: they form the legal position of the international community on these issues - a position that modern Russia has joined by law . These documents include:
Declaration of the Rights of the Child (proclaimed by the resolution of the UN General Assembly of November 20, 1959): Principles 5, 7,10;
Convention against Discrimination in Education (adopted by the UN General Assembly on December 14, 1960; ratified by Decree of the Presidium of the Supreme Soviet of the USSR on July 2, 1962): article 1.1, paragraphs. a), d); article 3, para. a), d); article 4, paragraph c); article 9;
Declaration on the Rights of Mentally Retarded Persons, December 20, 1971: paras. 1–4;
Declaration on the Rights of Persons with Disabilities, December 9, 1975: paras. 2–4, 6, 10;
Convention on the Rights of the Child of November 20, 1989 (ratified by the Decree of the Supreme Soviet of the USSR of June 13, 1990): article 2, paragraph 1; article 23, par. 1–3; article 28, par. 1 a), 2; article 29, paragraph 1 a), d), paragraph 2; article 31, par. 12; article 39;
World Declaration on the Survival, Protection and Development of Children of 30 September 1990: Targets, para. 11; Obligations, pp. 6–7;
Standard Rules for the Equalization of Opportunities for Persons with Disabilities, adopted by the UN General Assembly on December 20, 1993 (Resolution 48/96): Introduction, Art. 23; Rule 2 Medical care, para. 5; Rule 3. Rehabilitation, paras. 2–3; Rule 6 Education, paragraph 1, paras. 1, 2, 4–6, 8; Rule 9 Family life and individual liberty, para. 1; Rule 15. Legislation, paragraph 2.
Russian legislation
At the turn of the 1980s - 1990s, the state took a decisive step towards the humanization of society. Since 1992, more than 300 normative legal acts (laws, presidential decrees, government decrees, ministries' orders) aimed at protecting the interests of children with disabilities have been adopted at the federal level. Important provisions are contained, after the Constitution, in the Family Code, the Fundamentals of the Legislation of the Russian Federation on the Protection of the Health of Citizens (which determined the availability and procedure for the provision of medical care), the laws On Basic Guarantees of the Rights of the Child in the Russian Federation, On State Benefits for Citizens with Children (regulating, in particular, the payment of social benefits, benefits for housing and utilities, etc. to families raising a disabled child), “On additional guarantees for the social protection of orphans and children left without parental care”, “ On the Fundamentals of Social Services for the Population in the Russian Federation”, etc. Let us highlight the laws “On the Social Protection of the Disabled in the Russian Federation” and “On Education”, which will be discussed below.
The right of a disabled child to life and education in a family
A priority family education and responsibilities of the educator
In accordance with the Family Code of the Russian Federation, parents have the right and obligation to raise their children, bear responsibility for this and have a priority right to raise their children over all other persons. Children left without parental care are subject to be transferred for upbringing to a family (for adoption (adoption), guardianship (guardianship) or to a foster family), and in the absence of such an opportunity - to an institution for orphans or children left without parental care ; thus the legislator declares the priority of family forms of education of any child.
Children who are in full state care in educational institutions, medical institutions and institutions of social protection of the population and other similar institutions, guardians (trustees) are not appointed. The fulfillment of their duties is entrusted to the administrations of these institutions. Such children have the right to maintenance, upbringing, education, all-round development, respect for their human dignity, ensuring their interests.
The state imposes on the guardian (custodian) of the child the obligation to bring up the child under guardianship (guardianship), to take care of his health, physical, mental, spiritual and moral development. The guardian (custodian) is obliged to ensure that the child receives a basic general education. Unfortunately, the legislation does not provide for any limitation on the number of children in care for one guardian (see the section “Changing the situation of children in neuropsychiatric boarding schools”).
The state supports the quality of life in the family with a system of social benefits. So, for example, in accordance with the law, disabled children, their parents, guardians, custodians and social workers caring for disabled children enjoy the right to travel free of charge on all types of public transport in urban and suburban communications, except for taxis. Disabled people are provided with a 50% discount from the cost of travel on intercity lines of air, rail, river and road transport from October 1 to May 15 and once (round trip) at other times of the year. A disabled child and an accompanying person are entitled to free travel once a year to the place of treatment and back. Disabled children who have reached the age of five and suffer from impaired functions of the musculoskeletal system are provided with a car vehicles free of charge or on preferential terms with the right to drive these vehicles by adult family members. Parents are compensated for the expenses associated with the operation of special vehicles; at their request, instead of receiving a vehicle, annual monetary compensation for transportation costs is provided. There are also a number of benefits and additional rights for such families in the field of housing legislation. Executive authorities of the constituent entities of the Russian Federation and local governments have the right to establish additional benefits for disabled people.
Compensation principle
Of particular importance for the families of disabled children and NGOs are the laws “On the Social Protection of Disabled Persons in the Russian Federation” and “On Education” (1992, as amended in 1996), which for the first time in domestic practice created a legal framework and determined mechanisms for the integration of children developmentally disabled in society. In these legal acts, the state consolidated its obligation to provide children with disabilities with the education and rehabilitation they need. Moreover, it is ready to fulfill this obligation in two ways.
1. In "in-kind" form - the direct provision of the necessary rehabilitation and educational services in public institutions.
2. In cash (compensation) - if the necessary services are not yet provided by the state in the given region or if the parents found better services outside the framework of the state system of rehabilitation and education and paid for them themselves.
Thus, the law, bearing in mind the lack of necessary services for certain categories of children in the public sector, ensures the right of the family to choose how to receive services. Such legislation, on the one hand, is intended to promote the growth and development of the rehabilitation and educational infrastructure, and on the other hand, it enables parents to find a way out of the situation while the infrastructure has not yet been created. Such a liberal legal model testifies to high degree understanding of the situation by the legislator and awareness of their responsibility for those members of society who need maximum assistance and special care from the state. Moreover, the legislator respects the family, giving it the opportunity to show responsibility and independence in the search and choice of services that bring the greatest benefit to the child. Having adopted fundamental laws in this area, the state has set a certain framework for the constructive interaction of social protection and education authorities with the family in order to provide a special child with upbringing, education, necessary rehabilitation, vocational training - everything that is invested in the concept of "normal life". Let us consider in more detail the legislative structure of two vital developmental factors for a disabled child - education and rehabilitation.
Legal basis for the rehabilitation of a disabled child
According to the Constitution, Russia is a social state, “whose policy is aimed at creating conditions that ensure a decent life and free development of a person.”
Obviously, for a disabled child, the main factor determining his future life is the possibility of realizing his social potential. Rehabilitation is to a large extent a prerequisite for education and further socialization, since it provides the opportunity for the development of the child in the family and beyond, and also determines the boundaries of his future independence.
In accordance with the law, social services created in Russia "provide assistance in the professional, social, psychological rehabilitation of disabled people, persons with disabilities, juvenile delinquents, and other citizens who find themselves in a difficult life situation and need rehabilitation services."
The organization and implementation of the rehabilitation of a disabled child, as well as the reimbursement of the family for the costs of rehabilitation measures, is based on the mechanism for compiling and implementing an individual rehabilitation program (IPR), the concept, content and purpose of which is determined by Article 11 of the Federal Law "On the Social Protection of Disabled Persons in the Russian Federation" dated November 24 1995 No. 181-FZ as “a set of rehabilitation measures that are optimal for a disabled person, including certain types, forms, volumes, terms and procedures for the implementation of medical, professional and other rehabilitation measures aimed at restoring, compensating for impaired or lost body functions, restoring compensation for the ability of a disabled person to perform certain types of activities.
Drawing up an IPR is a universal mechanism established by law for determining the complex of rehabilitation services necessary for a disabled person. The Medical and Social Expertise Service (MSE), to which the state has entrusted this duty, represented by the relevant bureaus (BMSE), is obliged, within a month from the date of the establishment of disability (or the next re-examination), to issue an IPR card to the disabled person. The IPR card should include all the measures of medical, social and professional rehabilitation that are vital for a disabled person to maximize the development of his abilities and realize his potential, and which have the ultimate goal of the most complete integration of a disabled person in society. Thus, in accordance with the law, the IPR is a kind of “rehabilitation passport” for a disabled person, where all the rehabilitation measures necessary for the child are entered, and their executor (organization or individual) is determined. If the rehabilitation services included in the IPR have already been received and paid for by a disabled person, or if an agreement has been concluded for their provision and an invoice has been issued, the law provides for direct registration and receipt of compensation.
However, the Government of the Russian Federation has not yet adopted the Federal Basic Rehabilitation Program - a guaranteed list of rehabilitation measures, technical means and services provided to a disabled person free of charge at the expense of the budget, and, accordingly, the volume of state-guaranteed rehabilitation measures has not been determined. Thus, in Russia today the implementation of all rehabilitation measures included in the IPR is guaranteed, and their payment at the expense of the disabled person must be reimbursed by the state.
Legal basis for the education of a disabled child
The concept of "welfare state" also includes the guaranteed constitutional right of every child to a free education. Thus, the state, as in the case of rehabilitation, assumed obligations to ensure the rights of children with disabilities to education in any way: either by directly providing the necessary educational services in the system of state institutions (in kind), or by compensating the family for the costs of services, received outside the state education system (in cash). Both of these represent the fulfillment of the obligations of the state to provide education to the disabled at the expense of targeted budgetary funds.
In accordance with Art. 18 of the Law "On Social Protection of Disabled Persons in the Russian Federation" educational institutions, social protection authorities, communication and information institutions, physical education and sports ensure the continuity of upbringing and education, the social adaptation of disabled children. Moreover, if it is impossible to educate and educate children with disabilities in general or special preschool and general educational institutions, the state undertook to provide them with a full general education or individual program at home. The Government of the Russian Federation has established the amount of compensation for the expenses of parents when teaching disabled children at home or in non-state educational institutions within the framework determined by state and local standards for financing the costs of training and education in state or municipal educational institutions of various types, where various categories of children (with disabilities) study. and without them). A norm of similar content is included in the Law of the Russian Federation "On Education", it gives the right to formalize "family" education and similar compensation for any child of school age who is not studying in a state educational institution, regardless of where and how the parents carry it out education.
III. How the state slows down integration (executive power - against)
In the previous section, we discussed the progressive legislation currently available in Russia that provides conditions for the integration of children with disabilities in society. However, Russian state policy in this area is contrary to the law - both in the field of the family and in the field of education and rehabilitation. Consider the actual state of affairs.
Some statistics
According to the Ministry of Labor and Social Development of the Russian Federation (Ministry of Labor of Russia), in Russia at the beginning of 2003 the number of disabled children receiving a social pension and registered with the social protection authorities was 641.9 thousand people, which is 16, 1 thousand less than at the beginning of 2002, and 33.4 thousand less than at the beginning of 2001. However, the data of the Ministry of Health of the Russian Federation (Ministry of Health of Russia) state an increase in the disability rate in 2002 (196.2 per 10,000 child population from 0 to 18 years) compared with 2001 (respectively 195.1), as well as insufficient use of the rehabilitation potential of children. Thus, the reduction in the total number of disabled children, cited by the Ministry of Labor, is obviously caused not by an improvement in the situation with children with disabilities in general, but by completely different reasons. The most probable of them are the imperfection of accounting for children with disabilities in the system of social protection, as well as the general decline in the population in Russia (the decrease in children with disabilities from the corresponding age group - up to 18 years old - exceeds their growth due to those born and identified for the first time). The first factor is confirmed by information from Larisa Baleva, chief specialist in the medical and social examination of children of the Ministry of Health of Russia: “According to experts, the indicators of childhood disability should be higher - at least 1 million, because very many children with disabilities are not registered for disability, the mechanism for establishing it in practice it works very badly. The second factor is supported by the data of the Ministry of Health of Russia17 on the decrease in newly diagnosed disability (2001 - 26.2; 2002 - 25.8 per 10,000 child population, respectively).
In 2002, diseases that caused disability in children were distributed in the general picture of the causes of disability as follows17: infectious and somatic diseases - 34.5%; diseases of the nervous system - 20.6%; mental disorders - 21.2%; congenital developmental anomalies - 18%. Considering that among congenital anomalies the proportion of chromosomal anomalies (10.2%) and anomalies of the central nervous system (9.1%) is high and tends to increase, it is easy to see that in the general structure of nosological causes of disability in children predominate (61 ,1%) psycho-neurological disorders of a wide range and multiple developmental disorders.
Let us analyze for comparison the data of the Ministry of Health, cited by the State Committee of the Russian Federation on Statistics (Goskomstat of Russia) and presented in a slightly different format. According to these data, disabled children aged 0–17 in Russia are distributed according to the main health disorder as follows (the terminology of the data source is retained): mental disorders - 21%; other psychological - 6%; language and speech - 2%; auditory and vestibular - 5%; visual - 8%; visceral and metabolic disorders and eating disorders - 25%; motor - 23%; disfiguring - 5%; general and generalized - 4%. If we summarize the entire spectrum of disorders that result in disorders of the psyche and nervous system (mental; other psychological; language and speech - they, as a rule, also have malfunctions in the work of the psyche or nervous system; motor - they most often mean children's cerebral paralysis; disfiguring - most of them are accompanied by mental disorders; general and generalized - usually these are severe congenital anomalies), you get 61%. And this is according to the most modest estimates: after all, the assignment to one or another category in the case of multiple disorders is made according to the leading disorder, and therefore, a significant part of children with multiple disorders, where the disability is based on one of them (for example, vision or hearing), does not entered this 61%. Not included here are such disorders leading to severe mental disorders, such as disorders such as mucopolysaccharidosis and phenylketonuria - they are classified as "visceral and metabolic disorders and eating disorders."
Thus, the analysis of statistical data shows that the main part (at least two thirds) of children with disabilities are children with mental and nervous system disorders and children with multiple disorders. If we take into account that the category of disabled children “does not include children with a mild degree of mental retardation, children with mental retardation and children with speech pathology”, then this majority of disabled children include children with moderate and severe mental and nervous system disorders and children with multiple disabilities. All of these are children with serious pathologies, who are especially in need of intensive comprehensive care; as will be shown below, they are in a truly catastrophic situation in Russia, their needs are ignored, their rights are violated totally and everywhere. Recently, the concept of "disabled children" in Russia has increasingly begun to be disclosed as "children with disabilities". The transition to such terminology reflects the complete disregard of the interests of children with serious psycho-neurological and multiple disorders by the Russian state social sphere.
Public policy - segregation policy
Contrary to the legislative paradigm, in Russia the state policy towards people with severe developmental anomalies is still based on the priority of segregation - their removal from society and keeping them in closed stationary institutions. The segregation system is firmly based on the following operating factors.
1. Pressure on parents
For decades, the completely implausible idea has been introduced into the public consciousness that children with impaired development are born exclusively in families with antisocial behavior (to alcoholics, prostitutes, etc.). Thus, a family in which a child with problems is born finds itself in the zone of public condemnation. From the lips of state officials one can often hear that society is not yet ready for the integration of such children, that special efforts are needed to change this attitude, and only then can we talk about changes. However, specialists working in integrative children's institutions that have begun to appear now unequivocally note that the attitude in society towards such children is noticeably changing. In such institutions, where children with developmental disabilities are brought up and educated together with healthy peers, queues of ordinary children are lining up, striving to get into such Kindergarten or school. The idea of "unpreparedness of society" is another myth picked up by the state to explain its own unwillingness to change anything.
And the policy of the state is as follows: as soon as it turns out (at birth or later) that a child has serious developmental disorders, doctors (from medical staff in the maternity hospital to pediatricians and psychoneurologists in a polyclinic or consultation) convince parents (actually by pressure) to send the child to a closed residential institution . Parents are advised "to give birth to another child, and about this, with impaired development, do not worry." At the same time, they not only emphasize that there are no specialists in the field of family assistance who can help such children; Parents are misled that there are such specialists in boarding schools.
2. Economic factor: violation of priorities
Domestic and world experience has clearly shown that both the effectiveness of rehabilitation and the guarantees of a decent future for a child left in a family are immeasurably higher than for a child sent to a boarding institution. The same experience irrefutably testifies: the full-fledged upbringing of a child with problems living in a family costs the state much less than staying in a hospital of any type.
Therefore, when a child with a developmental disorder is born, everything possible must be done so that he remains in the family. Of course, it's best in native; if this is not possible, then at the reception. And only if it is not possible to leave the child in the family, one must think about which guardianship institutions can bring his life as close as possible to natural, that is, family, conditions.
However, there are certain economic interests behind the segregation system: while colossal public funds are spent on its maintenance - from 40,000 rubles. per child per month (in adult boarding schools this figure is even higher), – often only an insignificant part of them reaches the child.
Today, the Russian state allocates much more funds for boarding schools and guardianship than for family support and adoption. An absurd bias arises: the priority support for boarding schools over family forms provokes the family to “surrender” the child, which is in fact extremely unprofitable for the state. This leads to tragic consequences: parents send their children to boarding schools, not wanting to abandon them, but also not being able to feed and clothe the child at home.
In the absence of family support (native or adoptive), the recent development of guardianship, unfortunately, also works to “push” the child out of the family. As a result, it happens that a low-income parent sends the child to a boarding school, and then other relatives arrange guardianship of the same child. Only in this way can a family be able to feed and clothe their own child, because the guardian's allowance is much larger than the pension for the maintenance of a disabled child.
The same can be said about adoption: it would become a humane act only if everything possible had been done to keep the child in the family of origin.
Today, as a result of a violation of the natural sequence of priorities, even quite reasonable steps in the field of social protection of a disabled child are rendered meaningless and nullified.
Children in psycho-neurological boarding schools
The system of state boarding schools in Russia, in the form in which it exists now, is absolutely “closed”. What is happening today in psycho-neurological boarding schools and what consequences this has for society makes us dwell on this issue specifically. If a child with serious developmental disorders is taken to a residential institution, then his life proceeds according to the following scenario.
First, he ends up in the Orphanage. The developmental disorders that he has are significantly aggravated, which is caused by the lack of maternal warmth, lack of attention, games, necessary activities - after all, even healthy children who enter the Orphanage inevitably develop developmental delays, and their physical and mental state begins to deteriorate. However, these institutions within the health system still somehow care about the development of such children. The first terrible abuse of a child and his rights occurs when the child is 4 years old: it is decided which of the children is “to be taught” and which is not. Healthier children are transferred to boarding schools of the education system with the prospect of further education, and less healthy children are transferred to children's psycho-neurological boarding schools of the social protection system, where no further education is expected.
Such a boarding school at best resembles a "warehouse"; here, in fact, no one takes care of the child, since his development and improvement of his condition is considered impossible. The worst options for boarding schools are not much different from concentration camps. A documentary about what is happening in some boarding schools in Moscow and near Moscow was shown in the West and made such a strong impression that it has been discussed for many years. Foreign observers managed to get into several Russian boarding schools of this type and describe what is happening there.
A child who has ended up in a boarding school is actually deleted from the number of the living by society. Even if he survives in such conditions, there is no chance for his condition to improve, and the child is doomed to spend the rest of his life "behind a high fence" at the expense of the state (and life in such conditions, as a rule, is short-lived). Only in Moscow today, according to our estimates, there are more than 3,500 children whose life goes according to this scenario; and this figure does not include the many children who die in the first few months after falling into such a "sump". Life there resembles imprisonment, both in terms of the conditions of detention and the fact that the decision to intern is made against the will of the child being held there. Children with severe developmental disorders, especially those in need of careful and serious early help, die here quite quickly. It is known that of the children with Down syndrome (and this is far from the most serious developmental disorder: most of these children in the West live perfectly in the family and integrate into society) in our boarding schools, according to experts, 40% die in the first year of life; hardly one in ten survives to adulthood.
Let us also note a common phenomenon: Russian boarding schools for children with developmental disorders (related to both the education system and the social protection system) often end up with children with a relatively mild degree of psycho-intellectual disorders. As a rule, this is caused by the incompetence of a certain category of specialists (first of all, child psychiatrists and other specialists involved in deciding the fate of such a child and not familiar with modern ideas about the rehabilitation of such children), which is typical for Russia, and the resulting widespread overdiagnosis.
The longer a person stays in such a boarding school, the more he loses the chance to break out of this system someday into ordinary life (upon reaching the age of 18, pupils of children's psycho-neurological boarding schools end up in a boarding school of the social protection system for "psychochronics"). Particularly affected are those who ended up in a boarding school in childhood. It is known that with any internment of children, their removal from a normal community, subsequently one has to inevitably spend huge efforts and funds in order to return them back to society and adapt them to normal life. After all, even graduates of boarding schools, where children go without any problems, themselves, without additional support, practically cannot get used to society (less than 5% of graduates of orphanages master a permanent profession, 30% embark on a criminal path, 20% become homeless, 10 % commit suicide).
Let us add that in Moscow, for example, from the social pension, which was previously entirely “accumulated” on the account of the child in the boarding school and was intended to support him in the event of a hypothetical “release”, now 75% is transferred to the boarding school. Only 25% is accumulated in the child's account; this is an indirect confirmation that no “release” of a child from such a boarding school is expected from the very beginning.
It is regrettable to state that even with sufficient and regular funding, children with disabilities in state institutions are in a distressed situation. Often they are not provided with good nutrition, clothing, footwear, soft furnishings, furniture; are not provided in the required amount with medicines, hearing aids, glasses, auxiliary household means for care and movement. Violations of their property and housing rights are widespread. Many buildings of residential institutions for disabled children are in need of major and current repairs, the sanitary condition of the premises is unsatisfactory. The heads of boarding schools do not fulfill their obligations to protect the rights of disabled children, as a result of which many of them do not receive alimony, pensions, allowances, and housing is not assigned to them. The problem of providing housing for disabled children from among orphans and children left without parental care is not being solved.
Disabled children with severe developmental disabilities living in boarding schools of the Ministry of Labor do not receive education, since the vast majority of these boarding schools do not have the status of educational institutions, conditions and resources that are provided for by education legislation. At the same time, over 40% of these children, in violation of the law, are recognized as not subject to any education45. These children are not provided with any teaching staff, which leads to a violation of their right to education. Thus, children are subjected to “psychological violence, neglect and negligent treatment”, “inhuman and degrading treatment”, falling under the relevant definition of the “Convention on the Rights of the Child” (Article 19, paragraph 1 and Article 39), which was repeatedly pointed out Russian and international public for several years.
Disabled children in the family
Violation of priorities leads to the fact that only a small social pension is paid for a child with developmental problems living in a family, but there are no kindergartens or schools for him; compared to ordinary children, he is terribly deprived. It should be taken into account that a mother, having such a child, as a rule, cannot work. Often such families break up. As a result, the family is often actually left without a breadwinner, whose absence cannot be compensated for by a meager social pension.
Funds for the education and rehabilitation of children in Russia are distributed only through state institutions: appropriate funds are allocated for a healthy child through a kindergarten, school, and vocational education institutions. But since the state does not create any institutions for children with serious developmental problems living in a family, no funds are spent on such a child at all. The state offers only medical services to such a child left in the family: it temporarily places him in a psychiatric hospital or provides medical assistance on an outpatient basis - contrary to the obvious fact that the problems of such a child cannot be at least somewhat seriously solved only by medical means, without special psychological and pedagogical classes . This situation can be characterized as a "double punishment zone": the state has not created vital services for such children that other children "automatically" have - kindergartens, schools, leisure institutions; and therefore they never reach the taxpayers' money, which the state is obliged to allocate for these purposes.
There is no need to talk about professionalization as the next stage of socialization of adolescents with serious developmental disorders in the current conditions: there are no pre-professional training workshops for them in the country. These adolescents have no hope of socialization and inclusion in socially useful work. Their prospect is sitting at home with aging parents, and after the death of their parents - the same neuropsychiatric boarding school.
Disabled children who remain in the family actually get a very small part of what is due to them by right. Families raising such children in the regions of Russia and the Russian outback are in a particularly distressed situation, where children are deprived of even those social benefits and medical care that are necessary to maintain life. In a number of regions, contrary to the requirements of the law, medical assistance to disabled children is provided exclusively on a paid basis, which completely excludes the possibility of using it for hundreds of thousands of distressed Russian families; medicines are practically not dispensed free of charge even to disabled children, patients with diabetes mellitus and bronchial asthma, which poses a threat to their lives. For children suffering from cardiovascular diseases, surgical treatment is carried out either according to the quotas established for the regions or at the expense of the parents. Children's institutions are not staffed by doctors, nurses and other specialists. The requirements of the law on the sanatorium-and-spa treatment of disabled children are not being fulfilled satisfactorily.
There is an acute issue of providing disabled minors with special means of transportation. Children are not even provided with wheelchairs. In most regions, children with disabilities are not provided with vehicles. The situation is aggravated by the fact that since 1995 the Government of the Russian Federation, contrary to the requirements of the law, has not determined the procedure and conditions for providing vehicles and paying compensation for the cost of transportation costs.
Disabled children are not provided with conditions for barrier-free access to residential buildings, educational and healthcare institutions, sports facilities, places of recreation and cultural institutions, public transport is not suitable for them. This is another serious obstacle to the realization of the opportunity to lead a full life.
Payments of allowances to citizens with disabled children are not made in a timely manner. In many constituent entities of the Russian Federation, the requirements of the legislation on providing families with disabled children with benefits for paying for housing, utilities and using the telephone are not met. The norms of the law on the preferential procedure for providing housing and improving housing conditions for families with disabled children are practically not implemented anywhere.
Thus, families of children with developmental disabilities who dare to raise a child at home are “punished” by the complete absence of a support system. Such a policy, which has been going on since the times of the USSR, provokes the removal of children from the family and their placement in inhuman conditions. It turns out that the state spends a lot of money on maintaining the system of "expensive funerals" instead of supporting a family raising a child with developmental disabilities. As a result, families fall into the risk zone, the layer of socially deprived, desperate parents is rapidly growing; here lies a powerful source of social tension.
Victor Batsiev, Vladimir Korneev. "Rehabilitation and Education of the Special Child: A Legislative Analysis". - M .: Center for Curative Pedagogics (CLP), 2003.
Tsymbal E.I., Senior Researcher, Research Institute for the Problems of Strengthening Law and Order under the General Prosecutor's Office of the Russian Federation, Counselor of Justice. Legal protection of the interests of minors: the state and directions of improvement. Materials of the round table "Future legislators - the future without orphanhood", November 24, 2003, Moscow.
Family Code of the Russian Federation, art. 63.
Family Code of the Russian Federation, art. 123.
Family Code of the Russian Federation, art. 147, 149.
Family Code of the Russian Federation, art. 150.
Benefits for families with a disabled child under federal and Moscow legislation. - Center for Curative Pedagogics, M., 2002.
Constitution of the Russian Federation, art. 7.
Ibid, Art. eight.
"Regulations on the recognition of a person as a disabled person", approved by the Decree of the Government of the Russian Federation of August 13, 1996 No. 965, paragraph 22.
Article 18 of the Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ.
Appendix "Information and analytical material on the problems of children with disabilities" to the letter of the First Deputy Minister of Labor and Social Development of the Russian Federation of August 29, 2003 No. 1597-Pr, prepared for Parliamentary hearings on the topic "Children's disability in Russia - the need to improve legislation" ( October 2003). Hereinafter, the data are rounded to hundreds of people.
Appendix "Reference" to the letter of the Minister of Health of the Russian Federation of September 17, 03 No. 2510 / 10359-03-21 "On improving legislation to protect the rights of children with disabilities", prepared for Parliamentary hearings on the topic "Children's disability in Russia - the need to improve legislation" ( October 2003).
Larisa Baleva, chief specialist in the medical and social examination of children of the Ministry of Health of Russia, interview with the Novye Izvestia newspaper, 09/10/2003, pp. 1, 7.
Annex to the letter of the Deputy Chairman of the State Committee of the Russian Federation on Statistics No. MS-09-11/2880 dated August 18, 2003, prepared for Parliamentary hearings on the topic “Children's disability in Russia - the need to improve legislation” (October 2003).
Volosovets TV, Head of the Department of Special Education of the Ministry of Education of the Russian Federation. "Improving the legislative and regulatory framework for special education in Russia." Materials of the round table "Future legislators - the future without orphanhood", November 24, 2003, Moscow.
According to the President of the Down Syndrome Association S.A. Koloskov.
Letter of the Prosecutor General of the Russian Federation "On the implementation of legislation on the social protection of disabled children" dated February 01, 2002 No. 1-GP-3-2002.
“Abandoned to the State: Cruelty and Neglect in Russian Orphanages”, Human Rights Watch Report, 1998.
Ways of despair: misdiagnosis and mistreatment of orphans in the USSR. Under the general editorship of Caroline Cox. Per. in Russian ed. M. Grebneva. - M., "Pedagogical Association "Rainbow"". - Christian Solidarity International, 1991.
The main source of data in this paragraph is the Letter of the Prosecutor General "On the implementation of legislation on the social protection of children with disabilities" dated February 01, 2002 No. 1-GP-3-2002.
"Information on stationary institutions of social service for the elderly and disabled (adults and children)". Form of state statistical reporting "Sobes-3" for 2000.
Alternative report of Russian NGOs to the UN Committee on the Rights of the Child - Commentary on the Second State Report of the Russian Federation, 1998; “Abandoned to the State: Cruelty and Neglect in Russian Orphanages”, Human Rights Watch Report, 1998; “Human Rights in Russian Regions, 2001”, Moscow Helsinki Group Report, pages 208-209.
Until the end of the section, the main source of data is the Letter of the Prosecutor General "On the implementation of legislation on the social protection of children with disabilities" dated February 01, 2002 No. 1-GP-3-2002.
Article 30 of the Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ.
Rehabilitation
Lack of rehabilitation infrastructure
With the adoption of the basic laws in this area, great hopes were placed on the system of social services being created in Russia: departments for the social rehabilitation of disabled children in social service centers, centers for social assistance to families and children, etc., which are in every small town, and in in large cities, their number is in the tens. But, unfortunately, the social services created in Russia, contrary to the law, evade or categorically refuse professional, social, psychological rehabilitation of disabled people, persons with disabilities who need rehabilitation services. So, for example, departments of social protection of the population represented by the ITU bodies refuse parents of children with disabilities with serious developmental disorders (with organic brain damage; with early childhood autism, schizophrenia, psychopathy; with epilepsy; with various genetic disorders; with severe mental retardation; with severe neurosis and other severe mental, neurological and speech problems, as well as with multiple disorders) in social and psychological rehabilitation based on the "severity of the child's condition", offering them placement in a medical hospital (which in most cases is ineffective and, moreover, destructive for child) or to a psycho-neurological boarding school.
Social service centers operate in Russia on the basis of the Decree of the Ministry of Labor and Social Development of the Russian Federation dated July 8, 1997 No. 36 “On Approval of the Approximate Regulations on the Center for Social Services for Elderly Citizens and the Disabled”. Clause 3.1.6 of this Regulation contains contraindications to the enrollment of citizens for services, in particular, the first paragraph gives “the presence of mental illness in citizens”. According to the Department of Social Protection of the Population of Moscow, “in the departments of social rehabilitation of disabled children in social service centers and centers for social assistance to families and children, which are available in almost every administrative district, children from 3 to 18 years old are accepted who do not require outside help. care and having no restrictions on self-care”31. Thus, these services remain limited to helping children with minimal disabilities; children with more severe disabilities are still excluded.
There are no separate state institutions, and even more so - a system of professional and social rehabilitation of such disabled children and young people. For such young people, institutions of medical and social expertise still use the concept of “incapacity for work” (often this definition as a sentence is recorded in a certificate certifying disability), which is interpreted as a ban on working at all. In Moscow, for example, the parents of such children and young people received written evidence from the Department of Social Protection of the Population about the complete absence of such institutions in the capital.
Federal executive authorities, constituent entities of the Russian Federation, with completely unsatisfied regional and territorial needs for such services, in no way contribute to the development of non-state rehabilitation institutions. Contrary to the proposals of non-governmental rehabilitation organizations, executive authorities almost universally refuse to conclude contracts with them for the provision of such services. The leading research institutes and non-state rehabilitation and educational organizations employ the largest professional specialists and have accumulated extensive scientific and practical experience in the rehabilitation and education of such children. Despite this, authorities at various levels, unfortunately, still do not have the opportunity to implement any serious programs for training specialists and teaching them modern methods of complex rehabilitation of children with severe developmental disorders.
The most painful effect on the situation of disabled children is the actual absence of an effective comprehensive rehabilitation system; for children with severe and severe developmental disorders, who especially need it, its absence is simply fatal. Salvation in such a situation would be the implementation of the mechanisms described in the section "Russian legislation" (subsection "The right of a disabled child to life and upbringing in a family"), according to which the state is obliged to compensate the family for the costs of rehabilitation and educational services received outside the state system education and rehabilitation (in cash) if it cannot provide such services directly (in "kind" form). Today, however, the implementation of these norms of laws encounters the following main obstacles.
1. Non-compilation and improper compilation of individual rehabilitation programs (IPR)
In violation of the law, the medical and social expertise service for Russian children does not en masse draw up individual programs for the rehabilitation of a disabled person (IPR) (see the section Legal Basis for the Rehabilitation of a Disabled Child). So, for example, in 2001 IPR were developed for 122.5 thousand children with disabilities. And since the basis for the rehabilitation of a disabled person and the provision of benefits and guarantees provided for by law is individual program rehabilitation, which means that, according to official data, 535.6 thousand (out of a total of 658.1 thousand) disabled children in Russia are deprived of rehabilitation assistance; if we proceed from the data of the chief specialist in medical and social expertise of children of the Ministry of Health of Russia18, then approximately 900 thousand children with disabilities are deprived of rehabilitation. These conclusions are also confirmed by the conclusion of the Prosecutor General on the results of an audit of the implementation of legislation on the social protection of children with disabilities in all regions of Russia, carried out on behalf of the President of the Russian Federation: “legislation on the social protection of children with disabilities is being implemented unsatisfactorily”; IPR "... are developed only in isolated cases", which is a direct violation of the current legislation. Even the largest cities are no exception, which is confirmed, for example, by the results of an audit conducted by the Moscow prosecutor's office (Letter of the Moscow Prosecutor's Office dated July 10, 2003 No. 21-116-03): disabled children in terms of drawing up individual rehabilitation programs is recognized as justified ... ". Moreover, in Moscow, for example, ITU services, when establishing a child’s disability or re-examination, parents are offered to sign a refusal to draw up an IPR (which is invalid, like any waiver of rights) and, on the basis of this “refusal”, they do not fulfill one of their main duties - not make up the IPR.
Most of the employees of the Russian ITU bureaus are not aware of modern ideas about the necessary rehabilitation measures for special children and the state standards corresponding to them. Therefore, the few IRPs that have been drawn up are usually limited to medical measures and do not include the necessary measures for social rehabilitation, special education and, at a certain age, vocational rehabilitation. This violates both Russian legislation (IPR is “a set of rehabilitation measures that are optimal for a disabled person”) and the medical duty of MSE bureau employees (who, in violation of the law, in the overwhelming majority of cases are staffed only by doctors). Such vicious practices obviously fall into the category of actions that States warn against in the Standard Rules for the Equalization of Opportunities for Persons with Disabilities (mentioned in the International Documents section of this report), paragraph 5 of Rule 2. Health care: “States should ensure that physicians and other medical personnel receive adequate training so that they do not offer parents the wrong advice, thereby limiting choices for their children. This preparation process must be ongoing and based on the latest information.”
2. Denial of compensation for the cost of received rehabilitation services
In those rare cases when an individual rehabilitation program (IPP) is nevertheless drawn up, and the parents were able to receive services in the non-state sector, the compensation of funds for rehabilitation services by the social protection authorities is not made (contrary to the requirements of the law on reimbursement to the family of the funds spent by it on the implementation of the child's IRP -disabled), it can only be obtained by a court decision (in Moscow and the Moscow Region, parents won several such cases). As evidenced by the results of the already mentioned inspection of the Prosecutor General’s Office, “one of the reasons for the current situation is that the Government of the Russian Federation, in violation of the requirements of the law adopted in 1995, has not yet approved the “Federal Basic Program for the Rehabilitation of the Disabled and the procedure for its implementation.”
Education
General situation
According to statistical reports and the Ministry of Education of Russia, education in the system of general and special education (including in the form of home education) is received by only a little more than 185 thousand children with disabilities20. This means that, based on official data, 473 thousand (out of a total of 658.1 thousand) disabled children in Russia are deprived of education; if we proceed from the data of the chief specialist in medical and social expertise of children of the Ministry of Health of Russia18, then more than 800 thousand disabled children are deprived of education. It is obvious that “a significant number, and possibly the majority of children with disabilities of school age are not in education”20.
Lack of educational infrastructure for children raised in families
Some categories of disabled children (deaf and hard of hearing, blind, children with mild neuropsychiatric problems) receive one or another, albeit insufficient, assistance in state institutions. However, Russia has not created an educational infrastructure for children with severe developmental disabilities. Contrary to Article 18 of the Law “On the Social Protection of Disabled Persons in the Russian Federation”, educational institutions everywhere refuse to raise and educate disabled children with serious developmental disabilities. Even in Moscow, the parents of such children received written responses from the Department of Education about the practical absence of such institutions in the capital. Even if such a child is agreed to organize individual education or homeschooling, then the volume and quality of the classes are extremely insufficient and do not meet the needs of corrective education for a child with serious developmental disabilities.
In violation of Article 18 of the same Law, the vast majority of general preschool institutions do not accept disabled children of preschool age with serious developmental disabilities47. As a rule, special preschool institutions have a five-day schedule for a child's stay (essentially, a boarding school), which drastically reduces the chances of a full-fledged development of such a child.
Depriving the family of alternative opportunities
In such a situation, the implementation of the mechanisms described in the section “Russian legislation” (subsections “The right of a disabled child to life and upbringing in a family”, “Legal foundations for the education of a disabled child”), according to which the state is obliged to compensate the family for the costs of education, is of particular importance. disabled children at home or in non-state educational institutions within the limits determined by state and local standards for financing the costs of education and upbringing in state or municipal educational institutions of various types. Many dozens of parents whose disabled children were not admitted to any state educational institution applied (often repeatedly) to the educational authorities during 2000-2003 with a request to receive compensation in accordance with this provision49. In no case was their request actually granted.
One of the reasons for the refusal (although legally this cannot serve as a basis for refusal) is the lack of a by-law - Federal standards for the cost of educating a child at the appropriate stage of education in state or municipal educational institutions of various types, which must be approved by the Government of the Russian Federation and have not yet been adopted .
Attempts by parents to arrange a "family education" and receive due compensation for many years were unsuccessful1. The first two successful attempts were made by parents with the support of lawyers in Moscow in early 2004 (after 3 years of "going through the throes").
Defeat in the right to education
The lack of an educational structure is reinforced by regional (illegal) acts that deny children with severe developmental disabilities the right to education. For example, the interdepartmental order defining this area in Moscow contains contraindications for admission to special (correctional) educational institutions for a number of categories of disabled children: with “severe forms of dementia; oligophrenia in the degree of pronounced imbecility; idiocy of various etiologies, including Down's disease; organic dementia with severe maladaptation (lack of self-service skills). Even if we do not take into account the extremely discriminatory and unethical terminology used in the Order to describe the problems of these children, the note to the Order clearly and unambiguously defines their fate: “children suffering from the named forms of dementia are sent to the appropriate institutions of the Committee for the Social Protection of the Population”, then is in boarding schools. Fulfilling this Order, medical-psychological-pedagogical commissions (MPPC) issue conclusions that impede the exercise of the constitutional right of such children to education and, instead of education, recommend placing the child in a psycho-neurological boarding school of the Ministry of Labor.
This practice is a reflection of the belief that persists today in Russia at the official level (contrary to modern ideas about the habilitation of such children) that children with serious developmental disorders, primarily psychoneurological and combined, are “unteachable” and, therefore, “not subject to training” .
Lack of professional training
In violation of Russian legislation, today Russia has not developed state educational standards for the education and training of young people with severe developmental disabilities. Accordingly, there are no state educational institutions for their vocational training. In recent years, the system of workshops has collapsed and fallen into decay, even for people with mild and moderate disabilities, who previously functioned at neuropsychiatric dispensaries.
So far, the legislation on job quotas, designed to provide jobs for the disabled on a massive scale, has not yet come into force. Almost everywhere, employers, having saved money on creating jobs for the disabled, are actually paying off them with these funds instead. This happens because it is very expensive to train disabled people in a profession and create a production specially adapted for their work: NGOs are not able to solve such problems, and the state does not deal with this. It is impossible to solve this problem without purposeful efforts of the state.
It should be noted that some categories of disabled children (deaf and hard of hearing, blind, children with a mild degree of neuropsychiatric problems or with movement problems, but with intact intelligence) still receive one or another assistance in state institutions. Assistance to them is also not sufficient and not quite effective. However, if, for example, children with movement problems and relatively intact intellect and psyche, who do not have barrier-free access to everything that healthy children use in Russia, have at least the possibility of remote access to education and culture, then children with severe neuropsychiatric problems are amazed. in total rights. Such children will not be helped by the presence of ramps, hearing aids and books for reading in Braille: they need constant qualified complex assistance - intensive regular classes for a number of years with various specialists. For them, education is inseparable from rehabilitation; only in this way can they be prepared for a future worthy life.
IV. The role of sector III and state policy
As shown above, the state still sends money intended for disabled children, mainly to boarding schools, so for those children who are brought up in a family, the state infrastructure is still not being developed. The distortion leads to the fact that both children degrading in boarding schools and children living in families find themselves in a distressed situation.
In such a situation, in such a scarce form of assistance, it would be natural for the state to rely on sector III, where an alternative infrastructure is being created, from which the state infrastructure will grow in the future, and what will later become the basis of the state integration policy is being tested. Let us analyze the state policy towards NGOs in this area.
NGO funding
State policy
State support for NGOs working with children with disabilities has been slowly transforming over the past 15 years. At the dawn of perestroika, when the first NGOs in this area were created, the attitude of the state was, at best, neutral, and for the most part, opposing. State officials refused to admit that such children should be treated and their condition could improve.
After Russia signed the main international conventions in this area and adopted in 1995 the law "On charitable activities and charitable organizations", the state's attitude towards NGOs began to soften little by little. State support gradually took on the character of targeted tax incentives. In some regions, local incentives have been introduced for charitable NGOs to pay rent and maintain buildings. However, the Tax Code, which came into force in 2002, abolished tax benefits for charitable and other NGOs (with the exception of its partial retention for public organizations of the disabled).
After the adoption of the law "On Education" (1992), the theoretical possibility of partial public funding acquired educational NGOs that received the opportunity for accreditation. However, in practice, those educational NGOs that provide services to children with severe developmental disabilities cannot be accredited, since it is for these children that there are no educational standards or programs approved at the state level. As a result, a "vicious circle" is formed, which does not allow such NGOs to receive regular state funding.
Russian legislation contains provisions on the provision of rehabilitation and educational services to children through government contracts under government orders. However, most NGOs do not face this as a system. In a number of regions, small municipal grants are distributed from time to time, which do not have a significant impact on the financing of NGOs.
The state absolutely does not help NGOs with obtaining and using premises for working with children with disabilities. Premises are extremely expensive Russian market, their acquisition and operation is beyond the means of most Russian NGOs. Cheap premises usually cannot get permission from the state services to work with disabled children (rehabilitation and educational services for such children are extremely scarce, and therefore are the main goal and subject of NGO activities in this area). As a result, due to the impossibility of finding more or less suitable premises, many effective models of assistance developed by NGOs have not been implemented for years.
Government officials are still convinced that people who work for NGOs, especially charitable ones, should not be paid. This hinders the development of normal contractual relations between NGOs and parents, which would serve as a basis for compensatory norms of laws to work. As a result of this attitude of the authorities, those organizations that are forced to charge parents do so “underground”, officially declaring themselves free of charge in order to comply with “bureaucratic” ideas about charity. This is a significant obstacle to the development of a normal market for services in this area and for parents to receive compensation.
Thus, Russian NGOs in this area operate practically in the absence of financial support from the state. Not everyone manages to survive in such conditions; those NGOs that have survived are forced to spend a lot of energy on maintaining their own viability. This leads to the fact that some of these organizations - those that have gained authority from state structures - receive offers and are forced to become state-owned (with the risk of a change in leadership and reorientation of the organization at any time, with all the restrictions imposed on the number and composition of specialists, contingent children, their territorial affiliation, methods of work, etc.). Another part of the organizations for which the transition to the state system is impossible, since it is associated with a loss in the quality of services and the risks listed above, is forced to switch to existence to a large extent at the expense of parents' payments, thereby limiting themselves to the contingent of wealthy families. Still others manage to find a balance in which wealthy parents pay for services themselves, while unsecured parents manage to find grant funds. The fourth form a complex structure, in which one part is state-owned and the other part is NGOs, since it is practically impossible to keep specialists and the quality of work on state salaries, and independent funding can be reliably obtained only through NGOs.
The policy of the Russian government regarding preferential taxation of charitable organizations (as long as it existed) was declared from the highest rostrum: "unknown organizations withdraw money from taxation." The attitude of local authorities is even more definite: if an entrepreneur helps state institutions (orphanages, boarding schools, etc.), then this is charity; if help goes to NGOs, then this is money laundering. Wherever NGOs usually turn for help, they invariably hear: “We are already helping the boarding school (or the church).” Such a policy of the state forces Russian entrepreneurs to spend money on the disabled, of course, in state institutions. The demonstrative lack of interest of the state in supporting the relevant NGOs provokes the lack of prestige in Russia of such charitable investments. To date, the upward trend in the volume of NGO services in the field of integration far outstrips the filling of a thin stream of private voluntary contributions from Russians, who are not yet able to provide significant support to these organizations.
V. Activities of NGOs to protect the rights of children with disabilities and change their situation in Russia
Individual Russian NGOs in this area from the very beginning of their existence were determined to change the situation of children with developmental disabilities in Russia. In the beginning, however, a lot of effort went into creating life-saving services for children and ensuring the survival of organizations. By the mid-1990s, thousands of rehabilitated and studying children stood behind Russian NGOs; managed to convincingly prove to the professional community that the condition of children, even with the most severe disabilities, as a result of timely started and qualified rehabilitation work can improve significantly and such children can learn successfully. It was NGOs who managed to attract serious Russian scientists and practitioners to the problem of effective assistance to such children, and actively accumulate Western experience in this area. As a result, ideas about the possibilities of rehabilitation assistance to such children have been significantly expanded. By this time, the direct protection of the rights of children with disabilities emerged as a special area of NGO activity and took the form of an integral movement that was gaining strength in Russia.
In the second half of the 1990s, this activity was expressed in different ways in the center of Russia and in the regions. In Moscow, NGOs involved in the protection of children's rights (first of all, organizations of professional professionals and human rights activists) mainly developed and lobbied proposals for reforming the legislative and executive mechanisms in this area (concerning, first of all, the education and rehabilitation of children with disabilities) both in capital and at the federal level, were engaged in monitoring the state of affairs in Russia. By this time (1998) was the compilation of the first in Russia Alternative Report of Russian NGOs to the UN Committee on the Rights of the Child, sent to the UN as a commentary on the corresponding state report. A significant part of the "Alternative Report" was devoted to the situation of children with disabilities in Russia. Subsequently, the submission of such reports to the UN was continued; well-known in the field of protecting the rights of children with disabilities, Moscow and all-Russian organizations regularly participate in their compilation.
In the regions, human rights activities in this area were carried out by parent associations and expressed in lobbying the interests of the children they represented in the municipal system of social protection and education. In a number of regions where parent associations managed to take strong positions in municipal legislative and executive bodies (Vladimir, St. Petersburg, Nizhny Novgorod etc.), significant progress has been made in the implementation of social benefits due to such children and their families.
However, there were no fundamental changes in the field of rehabilitation and education: in most parts of Russia, families with such children were still in poverty, and no services were created for children living in families. Living conditions in psycho-neurological boarding schools under the Ministry of Labor remained the same. Even the idea of educating the children held there was still absent, the conditions of detention were still incompatible with the development of children, and sometimes even with life. The situation was aggravated by outright sabotage of the implementation of the laws adopted by Russia in this area by officials of the middle and lower levels of the social protection system. The state system of effective assistance to children with severe and severe developmental disorders has not developed. The created network of rehabilitation centers was empty, children with severe and serious developmental disorders were still not accepted there. It is significant that the queue at the Center for Curative Pedagogics in Moscow is growing year by year and no longer falls below three hundred children, they are forced to wait more than a year only for the initial appointment. When the queue comes up, it turns out that during this time the parents could not find a place where they would agree to help their child.
In this situation, in the early 2000s, leading NGOs in this area reoriented the direction of human rights activities. After conducting a systematic study of Russian legislation, they stated its compliance with international standards. At the same time, the lack of elaboration of executive mechanisms and the “blocking” role of the mechanism for financing this sphere were revealed, and most importantly, the complete unwillingness of the executive branch to comply with the laws adopted by Russia. Within the framework of the new concept of legal protection, complex legal support for parents turned out to be effective, up to the consideration of the case in court, leading to the realization of the rights of their children to education and rehabilitation. On the other hand, an offensive was launched against the inhuman system of boarding schools, forcing them to start realizing the rights to education of the children held there.
VI. How to make a difference
In solving the problem, one can single out the sphere of responsibility of the state, the sphere of the possibilities of NGOs and the zone of their close cooperation.
What do we expect from the state
The policy of the state in this area, obviously, should change significantly - the natural sequence of priorities should be restored: first of all, the family of origin should be supported, then the foster family, then various forms of guardianship. Then the laws "will come to court" - integration will become a reality.
The practice of law enforcement will reveal those places that really need to be adjusted: it will become possible to improve legislation.
Patching "holes" in the law
Against the background of the fact that the legislative foundation for integration in Russia has already been built, legal framework brought into line with international legislation in this area - the absence of regulatory documents that ensure the implementation of laws is like a gear deliberately not inserted into the mechanism. This "hole" in the law gives the impression of being deliberate: the law does not work, money can not be spent, but from the civilized world everything looks quite decent (beautiful democratic laws have been adopted). But this version is too cynical, so many believe that there is still no reasonable, qualified policy in this area, and in any case, this is not given due attention.
Therefore, it is necessary that the Government adopt regulations governing the implementation of the norms related to the payment of compensation - Resolutions directly provided for or arising from the Laws "On the Social Protection of Disabled Persons in the Russian Federation" and "On Education": on the Federal Basic Program for the Rehabilitation of Disabled Children ( Federal Guaranteed List of Technical Equipment and Services Provided to a Disabled Child Free of Charge) and the procedure for its implementation and the Federal Standard for the Cost of Education of a Child at the Corresponding Stage of Education in a State or Municipal Educational Institution. This will greatly facilitate the practical implementation of compensatory norms of laws.
However, the development of these normative acts should be the subject of close attention of experts. For example, the development of the “Federal Guaranteed List of Technical Equipment and Services Provided to a Disabled Child Free of Charge” should be based on carefully calibrated recommendations compiled by specialists in the field of rehabilitation of disabled children on the necessary minimum of rehabilitation and educational services that are vital for the effective rehabilitation of various categories of children. persons with disabilities, taking into account both the type and severity of their disabilities. This is a serious expert work, which should be based on the modern international classification in this area. Such work can be done only with the integration of the efforts of NGO specialists and the state, since the Russian state system today has practically no idea about the range and volume of services necessary for the effective rehabilitation of children with severe developmental disabilities. The creation and approval of such a List will change the situation only if, when compiling it, the needs of all categories of disabled children are taken into account as much as possible and its content is agreed with experts in the rehabilitation and education of such children and economists. The same can be said about the "Federal standard of expenses for the education of a child" with various developmental disorders.
The question of where to get the funds for the first payment for alternative services must be resolved. Since today compensation is provided only on the basis of services performed, parents must find funds somewhere, which will be returned only after a few months. This issue must be resolved by one of the well-known methods: preferential lending for such services, the conclusion of direct contracts by the state customer with NGOs, etc.
Changing the position of children in neuropsychiatric boarding schools
The implementation of the compensatory norms of laws will undoubtedly significantly reduce the influx of children to boarding schools and withdraw part of the contingent from there. But such measures are still not enough to improve the situation of those children who are today in boarding schools. For a real improvement in the situation of children, it is necessary to break down boarding schools and create small family or community-type institutions, and for this it is necessary to legally limit the number of wards per guardian (in our opinion, one person can be the guardian of no more than 5-7 children). Today, in the hands of the director, who is the official guardian of several hundred children, all the funds allocated for the wards, and unlimited power over them, are concentrated. Legislative limitation of the number of wards will eliminate this monopoly, the proposed measure will greatly contribute to the disaggregation of boarding schools.
In the future, the most progressive option is to allow the guardianship authority to issue guardianship only if the child ends up in a family; otherwise, leave guardianship to the body of guardianship. Then guardianship will not be transferred to the boarding school at all. When sending a child to a boarding school, the guardianship authority will conclude a contract with the boarding school, according to which the boarding school will receive funds for the life support of this child (social pension), guaranteeing, in turn, the child decent living conditions. In addition, the guardianship authority will have to find an organization that will ensure the development and compulsory education of the child.
The variety of organizational and legal forms and forms of ownership of such institutions should be legislatively ensured with mandatory state support and state control. An important role also belongs to public control over the development and education of children in boarding schools60, 61.
Art. 14 of the Federal Law of December 10, 1995 No. 195-FZ “On the Basics of Social Services for the Population in the Russian Federation” (as amended and supplemented on July 10, 25, 2002 and January 10, 2003)
Excerpts from typical responses to parents:
– From the Department of Social Protection of the Population:
“Having considered your letter on the issue of complex rehabilitation of your daughter (21 years old) informs. In the system of the Department of Social Protection of the Population of the City of Moscow for the comprehensive rehabilitation of disabled people (including social) with similar health disorders, there are only stationary institutions (psycho-neurological boarding schools with permanent and temporary residence) ”(2003)
“In the system of the Department of Social Protection of the Population of the City of Moscow, for the rehabilitation of disabled children, there are stationary institutions and departments of social rehabilitation in social service centers and centers for social assistance to families and children. In the departments of social rehabilitation of disabled children in social service centers and centers for social assistance to families and children, which are available in almost every administrative district, children from 3 to 18 years old who do not require outside care and have no restrictions on self-service are accepted. (2003)
- From the Department of the Federal State Employment Service for the city of Moscow:
“Currently, it is not possible for you to undergo professional training… It is difficult to find employment considering your illness (schizophrenia), currently there is no suitable job for you in the database of vacancies in the city of Moscow” (2002).
Article 11 of the Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ; "Regulations on the recognition of a person as a disabled person", approved by the Decree of the Government of the Russian Federation of August 13, 1996 No. 965, paragraph 22.
State report "On the situation of children in the Russian Federation" 2002, p. 47.
State report "On the situation of children in the Russian Federation" 2002, Art. twenty.
Letter of the Prosecutor General of the Russian Federation to the President of the Russian Federation Putin “On the implementation of legislation on the social protection of disabled children” 01.02.2002 No. 1-GP-3-2002.
The inspection of the prosecutor's office was carried out at the request of the Regional charitable public organization "Center for Curative Pedagogics".
Article 9 of the Civil Code of the Russian Federation.
Article 11 of the Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ.
This is also a violation of the law, see "Approximate regulation on institutions of the state service of medical and social expertise", approved by the Decree of the Government of the Russian Federation of August 13, 1996 No. 965, paragraph 13.
Article 11 of the Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ.
Victor Batsiev, Roman Dimenshtein, Vladimir Korneev, Irina Larikova. "Rehabilitation and education of the special child: from progressive laws to their implementation". - M, CLP, 2003.
Article 10 of the Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ.
Special report of Russian non-governmental organizations for the UN Committee on Economic, Social and Cultural Rights (CESCR) "The situation of children with disabilities in Russia: the right to education, social integration and rehabilitation." - In the book: Child Protection Technology. - NGO "Right of the Child" of the Russian Research Center for Human Rights, Moscow, 2003.
This refers to the system of necessary institutions of various types and types, including a wide range of educational services of various levels for children with developmental problems of varying severity.
Excerpts from typical responses to parents:
- from the Department of Education of Moscow:
“In specialized schools and boarding schools of the city’s education system, there is no type of educational institution that implements the program of work with your son recommended by the GMPPC” (2003)
“Kindergartens provide education, training, supervision, care and rehabilitation of children who serve themselves on their own or with little help from adults. The list of kindergartens does not include institutions for children with a complex structure of the disease” (2003);
- from the municipal center for psychological, medical and social support:
“The methods and programs used by specialists are not focused on effective support for a child with serious problems in health and development” (2003).
At the beginning of 2004, only 1 elementary school out of 4 grades was functioning in the public education system of Moscow, where children with severe developmental disorders study.
Decree of the Government of the Russian Federation “On approval of the procedure for the upbringing and education of disabled children at home and in non-state educational institutions”, dated July 18, 1996 No. 861, paragraph 8.
Order of the Health Committee and the Education Committee of the Government of Moscow dated 10/19/1998, 10/21/1998 No. 574/579 "On the organization of the city medical-psychological-pedagogical commission for the recruitment of special (correctional) educational institutions for mentally retarded children", Appendix No. 2 "Indications and contraindications for the admission of children to special correctional boarding schools (schools) for mentally retarded children."
From the model conclusion of the MPPC:
"Reference. Given to a child… that he/she passed the district psychological-medical-pedagogical commission… Recommended: stay in social protection institutions” (2000-2003).
The regulation "On the orphanage for mentally retarded children of the Ministry of Social Security of the RSFSR", approved by Order of the Ministry of Social Security of the RSFSR No. 35 dated April 6, 1979.
Law of the Russian Federation "On Education" dated July 10, 1992 No. 3266-1, art. 7; Federal Law "On the Social Protection of the Disabled in the Russian Federation" dated November 24, 1995 No. 181-FZ, art. 19.
From the answer to a young disabled person from the Department of the Federal State Employment Service for the city of Moscow:
“It is currently not possible for you to receive vocational training…”
“On Improving the Vocational Education of Disabled Persons”, Decision of the Collegium of the Ministry of Education No. 10/2 dated June 24, 2003
P.Yu. Gamolsky. Nonprofit Organizations: Taxation and Accounting in 2002. - M.: "Accounting", 2002.
For example, the Federal Law "On Basic Guarantees of the Rights of the Child in the Russian Federation" (adopted by the State Duma on July 3, 1998; approved by the Federation Council on July 9, 1998), art. 19.
On the situation of children with disabilities in Russia: an emergency situation and directions for urgent reform. - M., Center for Curative Pedagogics, 1998.
Alternative report of Russian NGOs to the UN Committee on the Rights of the Child. Commentary on the Second Periodic State Report on the Implementation by the Russian Federation of the Convention on the Rights of the Child in 1993-1997. - M., 1998.
Independent report of Russian public organizations to the Special Session of the United Nations General Assembly in 2001 on the results of the World Summit for Children (New York, September 19-21, 2001). - M., 2001; Special report of Russian non-governmental organizations for the UN Committee on Economic, Social and Cultural Rights (CESCR) on the topic “The situation of children with disabilities in Russia: the right to education, social integration and rehabilitation. (The report was presented in connection with the consideration by the UN Committee in November 2003 of the Fourth Periodic Report of the Russian Federation). - M., 2003.
At the beginning of March 2004, structural changes took place in the Government of the Russian Federation - the Ministry of Labor was liquidated, which gives hope for a change in the course in the social sphere.
This work was carried out by a group of qualified lawyers within the framework of legal projects of the Center for Curative Pedagogics1.
A text43 has been published that serves as a guide for lawyers and parents, including how to defend the rights of their children in court.
For example, International Classification of Functioning, Disabilities and Health: ICF. - World Health Organization, 2001.
Creation of an alternative social service
A serious blow to the development of the sphere of integration was dealt by the adopted law on alternative service, which buried hopes for stable support for this sphere: everyone knows how successfully young people from other countries work in integration institutions for such children. The adoption of the law in its modern form can be seen as a diversion against the entire sphere that works with socially unprotected sections of society. The state will have to make a choice between the dubious interests of the Ministry of Defense and the needs of the social sphere and adopt a normal (as in civilized countries) law on alternative social service.
A fundamental change in the situation - targeted assistance to children
In the issue of stimulating the development of infrastructure in the field of integration, the state faces a dilemma: should NGOs, other organizations and institutions compete for the funds distributed by the state in the course of competitions - or should the consumer of services determine preferences in the distribution of funds?
Many hopes for the funding of the relevant NGOs are connected with the ideas of the state social order. However, the state is not yet ready to act as an expert in this area. In such a situation, a much more reliable model of targeted assistance is the conclusion of direct agreements between the state and an NGO at the choice of the family (the functions of control over the use of funds should remain with the state).
In fact, only in the case when the choice remains with the consumer, is the maximum fast development spheres. (Financial support from state or other organizations on any other grounds resembles the notorious “support for domestic producers” to the detriment of domestic consumers and does not stimulate the growth of quality in any way). In relation to the consumer of services, this is precisely the real democratic mechanism (and not competitive surrogates). The state needs only one "non-market" step - to tie the funds going into this area to the consumer of services. Further, in a situation of much greater transparency and easing of state control, the market will finish its job - it will create an integration infrastructure as quickly as possible.
The implementation of the existing obligations of the state to compensate a disabled child for the lack of rehabilitation and educational assistance is nothing more than an unfinished idea of targeted assistance to those in need. The main feature of targeted assistance is that it is assigned to the recipient, and not to the institution. Thus, the state will entrust the consumer to decide where to get the assistance he needs, and send the funds received to the organization of his choice. In Russia's situation, when financial flows are not transparent and the necessary infrastructure has not been created, targeted assistance is the way out that could radically change the situation.
A significant limitation of existing state obligations is that the right to compensation extends only to children with disabilities. Meanwhile, in Russia, a huge number of children are in a “borderline” state (their number is at least an order of magnitude greater than the number of children with disabilities). They are also inexorably ousted from the education system, and with it from the normal society; assistance to them requires a very high qualification, is expensive and also very scarce. If qualified assistance is not provided to them in time (or if the possibility of receiving it alternatively through the compensation mechanism is not provided), there is a high probability of their disability or, at least, social maladaptation. And today the law promises them help only when they are already disabled. AT Russian state there are no large-scale programs supporting disability prevention. This situation can be changed if the “Federal Guaranteed List” is expanded to cover the contingent of children in a “borderline” state, determining for them the appropriate volumes and types of necessary assistance.
After all, the state is called upon to express the will of the people. Consumers of services are taxpayers and have the right to demand that their funds be spent in such a way that the relevant system works effectively.
What can NGOs do
NGOs will continue to play the role of the vanguard in supporting the family in the integration of children with disabilities. Components this activity is the creation of a professional community, awareness-raising activities, protection of the rights of children with disabilities and, finally, direct work with the authorities.
Building a Community of Professionals
By the time the integration of disabled children begins to spread in the state system, it is necessary to create various models of integration that accompany all life stages of development, education and socialization of such a child. This experience should be prepared for wide dissemination in various regions of Russia.
It is necessary to train specialists capable of working effectively in this area, to establish an intensive system of their internships, training and exchange of experience. Modern manuals and textbooks for the training of specialists should be translated and published, and appropriate courses should be introduced in psychological and pedagogical universities.
Information and education
The vast majority of parents of disabled children, especially in the Russian regions, as well as doctors, teachers, workers in the social and rehabilitation-educational sphere, functionaries of this system are in virgin ignorance both about the laws adopted in the country and about the possibilities of rehabilitation and integration of such children. Organized massive education of parents, specialists and functionaries is necessary. In all state organizations, starting with maternity hospitals and children's polyclinics, in hospitals, kindergartens, schools, rehabilitation centers, departments of social protection and education, ITU and MPPC bureaus, guardianship and guardianship authorities, etc., information should be available on what developmental disorders are, what are the measures to help such children, how to organize their rehabilitation and education, what are the possibilities for their integration, which organizations can be contacted for help, etc. Comprehensive information is needed about the rights of such children to ensure their integration. Sufficient information about what happens to a child when he enters a boarding school must also appear in various places.
There should be books for parents teaching them how to raise a child with developmental problems.
It is very important to disseminate and use the positive experience that has emerged from the leading representatives of the state system, who managed to support the initiatives of parents and specialists and created the first islands of integration in state children's institutions.
Legal protection of children with disabilities and their families
How to make laws work
As shown above, Russian officials in this area retain their habitually discriminatory attitude towards the families of disabled children that has developed over the previous decades. This attitude is supported by the confidence that has been entrenched over the years that laws in Russia are declarative in nature. As a result, the norms of existing legislation still do not work, the implementation of which could significantly change the situation in this area (for example, the state guarantees described above to reimburse the family for the rehabilitation or education of a disabled child).
It is by no means always possible to reverse such an attitude by legal education of officials alone. Many officials begin to take laws seriously only when the court confirms that the law is on the side of the disabled child43. Therefore, today, first of all, the use of the court as a basic democratic mechanism and the widespread use of such judicial practice can force the executive branch in this area to comply with the law and turn to a constructive dialogue. It is also necessary to consistently achieve in court the abolition of "illegal" legal norms that infringe on the rights of children with disabilities.
Opportunities for the Judicial System to Help Children in Families
Since the judicial system in Russia is organized not in a precedent, but in an accumulative manner, in order to facilitate the further path, it is necessary to conduct and win dozens of similar court cases. Such a situation will already receive the status of “judicial practice”. The existence of such a practice, in addition to directly protecting the rights of specific families to receive compensation, will create a number of opportunities for systemic changes in this area:
The Supreme Court will generalize the jurisprudence and recommend the courts in a certain way to solve similar judicial problems; this will facilitate the further conduct of such court cases, save judges from accidental errors and reduce the time of legal proceedings (in Russia today it is many months, sometimes years);
the presence of extensive practice will create a real opportunity to attract the attention of the prosecutor's office and the office of the commissioner for the protection of children's rights to massive violations of the rights of children with disabilities;
this, in turn, will make it possible to exercise substantial pressure on local, regional and federal authorities in terms of the adoption of by-laws regulating and facilitating the normal (without involving the court) execution of the law by officials. This is very important, because officials rely on by-laws in their activities.
These processes will go much more intensively if social advocacy “gets on its feet” in Russia.
How the court and the prosecutor's office can change the situation of children in boarding schools
The administrative measures that a number of human rights organizations have been able to achieve today are limited mainly to the recommendations of the Ministry of Education on giving boarding schools of the Ministry of Labor the status of educational institutions; First of all, through the efforts of the Down Syndrome Association, it was possible to achieve the abolition of orders of the Ministry of Social Security of the RSFSR dated April 6, 1979 No. 35 “On Approval of the Regulations on the Orphanage for Mentally Retarded Children of the Ministry of Social Security of the RSFSR” and dated October 22, 1986 No. 132 "On the typical structures and standard staff of institutions of the system of the Ministry of Social Security of the RSFSR". The Ministry of Education does not have the authority to apply by order to the institutions of another department (the Ministry of Labor), the requirement for guardians - the directors of boarding schools - "monsters" of the Ministry of Labor - to fulfill their obligations in relation to their wards5. Another thing is if this comes from the courts and the prosecutor's office; practice shows that such measures are much more effective. It is likely that in the near future the effectiveness of these measures will be demonstrated in practice.
The first changes in the field of integration occurred thanks to the activities of specialists working in the III sector - they knew how to organize help for children, and were inspired by the desire to do so. However, world experience shows that only parents have the power to truly change the lives of their children. This power is awakening before our eyes, we are on the verge of serious changes.
