CHILDREN AND DISABILITY IN TAJIKISTAN

Co-ordinator: Bakhtiya Mukhammadieva State Committee for Statistics, Dushanbe

MONEE Country Analytical Report 2002

The opinions expressed are those of the authors and do not necessarily reflect the policies or views of UNICEF.

UNICEF Innocenti Research Centre Piazza SS. Annunziata, 12 50122 Florence, Italy webs i te : www.unicef - i cdc .org

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REPORT

Problems and causes of child disability

in the Republic of Tajikistan

Dushanbe 2002

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INTRODUCTION

Within the framework of the programme of economic reforms, carried out in the Republic of Tajikistan, measures continue to be implemented to effect structural changes in the economy, improve the fiscal, tax and budgetary policies, the system of governance and social protection of the population. This makes it possible not only to maintain the economic growth trend, but also gradually to speed up the rate of development.

In 2001, the highest increment in the Gross Domestic Product (GDP) growth rate was attained over the years of independent development. In 1997, when a growth of the Gross Domestic Product was first achieved, this indicator stood at 1.7%, in 1998 it was 5.3%, in 2000 8.3% and in 2001 10.2%. Over the first ten months of 2002, the GDP growth rate, compared with 2001, was 10%.

The GDP analysis shows that its growth is ensured mainly by the production sector of the economy and the services sector. The past year has been marked by accelerated development of non-government-owned enterprises, which in 2001 accounted for about 30% of the GDP. In industry, more than 28% of output was produced by non-government-owned enterprises (in 1995, this share was only 3.3%). This became one of the factors behind the growth in the volume of production in industry from 8.2% in 1998 to 15% in 2001.

In previous years, the growth rate of the volume of industrial output was ensured mainly due to the growth in non-ferrous metallurgy, while today growth is noticed in other branches of industry, too.

At the same time, individual industries, such as the chemical and petrochemical, were stagnating. In addition, a fall in the production was observed in 30% of industrial enterprises.

Over half of all contractual construction and installation work in Tajikistan is performed by non-government-owned organizations. In 2001, the volume of investment in fixed capital stood at 194.8 million somonis, and 73% of the total volume of investment went into material production.

The share of budgetary funds in total investment is falling (from 78% in 1999 to 52% in 2001), while the share of foreign investors and the population funds is rising.

The private sector is largely responsible for the republic's entire commodity turnover (98%). Over 2001, trading organizations of all forms of ownership and individual entrepreneurs sold to Tajikistan's population 777.7 million somonis worth of goods.

In 1995, the dominant position in the total volume of paid services still belonged to the public sector: 93%. In 2001, its share in the total volume dropped to 23%.

Liberalization of trade and the formation of an open and stable trading system is one of the main requirements for economic growth. At present, Tajikistan has trading and economic partners in 74 countries, including 11 CIS countries. In 2001, the foreign trade turnover amounted to USD1,339 billion, of which 56% was with CIS countries and 44% with the rest of the world. Over the last five years, export indicators exceeded import indicators only in 1997 and 1998. In 2001, there was a negative trade balance of USD35.9 million. The trade deficit with the CIS countries amounted to USD326.4 million, while there was a USD290.4 million surplus with former Soviet republics.

Exports consist mostly of raw materials: aluminium, cotton fibre, mineral products, precious metals and stones, fruit and vegetables, and so on. During 2001, 286,400 tonnes of aluminium, to a value of USD 397.4 million, were exported and 69,000 tonnes of cotton fibre, worth USD 63.2 million, were sent abroad.

Imports go to satisfy the requirements for finished goods, raw materials for the production of aluminium (alumina), gas, fuel and lubricants and others.

The economic growth is accompanied by relatively low inflation. The average monthly inflation rate in the consumer sector during 2001was 1.0% (in 2000 it was 4.1%). Fluctuations in the dollar

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exchange rate in relation to the somoni were negligible and on the average exchange rate for 2001 was 2.3725 somonis to the dollar.

There is an annual trend towards an increase in both nominal and real wages. In 2001, nominal salaries rose by more than 50% and real wages by 15%. Arrears of wages are still huge, however. As of January 1, 2002, the total sum of arrears amounted to 28.8 million somonis, out of which 2001 accounted for 20.2 million.

In spite of the successes, Tajikistan is suffering serious economic difficulties. Under these conditions, the Tajik Government is focusing on issues of the development of the social sector and raising living standards.

Bearing in mind that humankind is obliged to provide children with the best it has, on December 14, 1990, the UN General Assembly proclaimed the Declaration of the Rights of the Child. Its goal is to ensure children a happy childhood on the basis of rights and freedoms. It calls on national Governments, local authorities, the public, parents and individuals to recognize these rights and strive for their observance with respect to children in accordance with the basic principles and other adopted standards.

In the Republic of Tajikistan, the Convention on the Rights of the Child was ratified by the Supreme Council (Parliament) of the country on June 26, 1993. The Constitution of the Republic of Tajikistan (Article 10) states that the principles and provisions of national law and international agreements, signed by the Government of Tajikistan, constitute a part of its legal system. The basic principles of the Convention are written into relative legislative acts and incorporated into national policy, on the basis of which government shall protect the rights and interests of children and guarantee their right to the normal living conditions necessary for their physical, mental and social development.

Of major significance are problems connected with child disability. According to the Constitution of the Republic of Tajikistan (Articles 34 and 39), government shall guarantee disabled children the necessary conditions for receiving an education, vocational training and social security. If there is a disabled child under the age of 16 in the family, those caring for the child are entitled to a labour pension.

Issues relating to the protection of the rights of disabled children and their guardians are also written into several laws of the Republic of Tajikistan: "On Social Protection for the Disabled", "On the Labour Code", "On Pensions", "On Physical Training and Sport", "On Health Protection of the Population", and "On Education".

On March 16, 1999, the Programme to Implement the Concept for Reforming the System of Social Protection for the Population was approved by Resolution No. 99 of the Government of the Republic of Tajikistan. On the basis of this concept, a draft Programme on Targeted Social Assistance to the Population for 1999-2015 was drawn up. This programme envisages measures designed to provide material support for the incapacitated citizens and the most needy groups of the population. A draft Programme for a Unified System of the Rehabilitation of Persons Disabled since Childhood and Children with Anomalies was drawn up to include medical, pedagogical, occupational guidance and vocational education aspects.

Resolution No. 27 of the Government of the Republic of Tajikistan, of January 6, 1997, approves the National Strategy of the Republic of Tajikistan for Health Protection of the Population up to the Year 2005. It is currently being reviewed in the context of the policy of achieving goals set in the document "Health for All in the 21st Century".

Resolution No. 94 of the Government of the Republic of Tajikistan, of March 4, 2002, approved the Concept for the Reform of Public Healthcare System in the Republic of Tajikistan, which envisages the following goals: • reform of the healthcare system;

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• health of mother and child; • control of infectious diseases; • a strengthening of primary medical assistance.

This concept envisages measures to improve the work of child healthcare institutions, and facilities for children kept under outpatient observation and for disabled children. They are designed to improve reproductive health, family planning, management of the problems involved in the immunization of children, as well as to control the most widespread diseases constituting the main causes of child disability, child and maternal mortality and diseases induced by the mothers' and children's nutrition.

The rate at which the reforms are implemented is determined by the policy, the level of economic growth and human resources development, and is governed by regulatory and legal acts. The main strategies of the reform are to be implemented stage by stage and some of them will be introduced by the pilot method.

Resolution No. 200 of the Government of the Republic of Tajikistan, of May 3, 2002, approved the National Concept for Education in the Republic of Tajikistan.

At the present time, the Open Doors Bar Association is making a substantial contribution in the Republic of Tajikistan to the more profound study of issues connected with the problems of child disability. The members of the Association are raising awareness among the public, heads of enterprises, organizations, educational institutions, health facilities and persons who have turned to them for advice on issues of the protection of childhood and the provisions of the effective legislative acts relating primarily to children. These actions are exerting a positive impact on people's activities and will ultimately tell on the dynamics of the identification of disabled children and the number of such children covered by the system.

The UN Children's Fund (UNICEF) is making a major contribution to resolving urgent issues of child healthcare on the basis of a programme of co-operation for the period of 2000-2004, adopted in pursuance to an agreement signed between the Government of the Republic of Tajikistan and the UNICEF office in Tajikistan on April 24, 2000. Work has begun to implement a number of programmes, projects and subprojects, in particular: Programme for Survival, Protection, and Development of Mother and Child; the Maternity and Neonatology project; the subprojects: Safe Maternity, Micronutrients, Breastfeeding, Safe and Sustainable Immunization, Integrated Management of Childhood Diseases, Water Quality and an expanded programme of immunization.

This report is the fourth in a series of reports prepared within the framework of the MONEE project. When compiling this report, use was made of the statistical data and results of a questionnaire survey of families with disabled children, carried out in July and August 2002 by the State Committee for Statistics of the Republic of Tajikistan. Use was also made of materials of the Scientific and Practical Conference "Problems of Child Disability and the Medico-Social Aspects of Infantile Mortality in Tajikistan", held in 2001 under the auspices of the Tajikistan branch of the Open Society institute of the Soros Foundation.

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I. DISABLED CHILDREN: WHO ARE THEY?

According to Article 23 of the Convention on the Rights of the Child, the Republic of Tajikistan recognizes that a mentally or physically disabled child should enjoy a full and decent life in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.

Disability means either long-term or permanent, full or partial loss of a person's working capacity as a consequence of persistent or virtually irreversible disorders in the functioning of the body in connection with disease, injury or development defects.1

In the Republic of Tajikistan, depending on the degree of loss of working capacity, medical-and-labour examination commissions (MLEC) establish disability of the 1st, 2nd or 3rd group. Disabled of the 1st group are people who have totally lost their working capacity and require constant care; disabled of the 2nd group have also completely lost their working capacity, but do not require care; disabled of the 3rd group are people with a considerably reduced working capacity, but who can do light or less work. The following causes of disability are identified:

1. General illness (including injury not connected with work);

2. Industrial injury, occupational disease, occupational pneumoconiosis.

3. Wounds received in protecting the state or fulfilling other military service duties.

Child disability has its own specifics. By definition, disability in childhood is a permanent social desadaptation, resulting from a chronic disease or pathological condition and seriously restricting the possibility of integrating the child in the environment suited to its age. Disabled children are in need of constant additional and special care.*

In the Republic, at the government level the problems of disabled children are the responsibility of the Ministry of Public Health, Ministry of Labour and Social Protection and the Ministry of Education. There are several non-governmental organisations (NGO) dealing with problems of disabled children. Their activities are focused on protecting the rights of the child, rehabilitation and socio-economic support of disabled children rendered under specific programmes.

The child's disability is established by a medical consultation commission (MCC) on the basis of observations by the child's physician. In a health facility a doctor responsible for work with disabled children is appointed by the order of its head. A special section in this paper is dealing with questions of establishing disability and re-certification of disabled children. Since 1994, this work has been carried out in pursuance of a new Order of the Ministry of Public Health of the Republic of Tajikistan No. 273 of September 5 1994 "The List of Medical Indications Giving the Right to Receive a Social Pension for Children under the Age of 16 Who Are Disabled Since Childhood".

On the basis of a certificate issued by the MCC and an application made by one of the parents, the social agencies at the child's place of residence grant a disability allowance for the child and issue a disability card. In compliance with the order of the Ministry of Public Health, disabled children undergo re-certification every year in specialized preventive healthcare institutions (PHI).

The Ministry of Public Health deals with determining the list of medical and social indications and counter-indications for placing children with physical or mental developmental handicaps in an infant home, specialized children's pre-school institutions, residential schools or residential homes for children.

1 Demographic Encyclopaedic Dictionary. Moscow. Sovietskaya Encyclopaedia, 1985. * "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001.

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An insignificant proportion of registered disabled children – about 9%, are inmates of these children's institutions, with differing departmental affiliation. Most disabled children stay with their families. Divisions of the Ministry of Public Health, Ministry of Education, Ministry of Labour and Social Protection, within the bounds of their competence, provide relevant services to families with disabled children. This is reflected in their departmental reporting.

In departmental statistics, the indicators require further processing to make them comparable with the data presented on age groups of children, the causes for and types of disability. There is now a need to set up a service in Tajikistan to coordinate the work of these ministries on the problems of child disability.

The State Statistics Committee of the Republic of Tajikistan (Goskomstat) is working to improve primary reporting from ministries. The aim is to obtain fuller information on initial child disability by age group and by the main groups of diseases.

For a fuller analysis of the problems of child disability, in July and August of 2002, Goskomstat of the Republic of Tajikistan did a questionnaire survey of 47 families with disabled children in the age of 0-15, including 9 families in the city of Dushanbe, 8 in the Hatlon Region, 13 in the Leninsky District, 15 in the Tursunzade District and 2 in the Faizabad District. Of those surveyed, 81% of the children live in rural areas and 19% in urban localities; 26 were boys (55.3%) and 21 were girls (44.7%).

Unfortunately, the questionnaires did not include any questions on the family itself: its composition, the type of family, educational level of the parents and incomes. The survey was carried out without any medical documents being presented, just according to information provided by the parents. The parents of the disabled children were reluctant to participate in the survey.

In preparing the report, materials of the scientific and practical conference "Problems of Child Disability and the Medical and Social Aspects of Infant Mortality in Tajikistan" were also used*.

The statistical data on disability received from departmental reporting, as well as the results of the questionnaire survey and medical research, cover different aspects of the problem, but generally, testify to a rise in the number of children with mental and physical defects in Tajikistan.

The fullest data on the number of registered disabled children is presented in the reports of the Ministry of Labour and Social Protection of the Population of the Republic of Tajikistan. The number of children aged 0-15 who received disability pension between 1989 and 2001 more than trebled to reach 19,200, which constitutes 6.94‰ per 1000 children of this age (the 1989 figure was 2.68‰). The data provided by health facilities in the city of Dushanbe confirm the rise in child disability (Appendix).*

* "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001.

Number of children aged 0-15 receiving disability allowances, persons

19243

174441613917825

22559

1217711656127481198689638042

674362650

5000

10000

15000

20000

25000

1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001

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At the same time, the overall scale of child disability in the Republic might be higher. This is explained by parents' reluctance, for psychological reasons, to admit that a child is disabled, so they do sometimes not register the disability. The parents also may not be aware of the way to register the disability. Some parents do not turn to health facilities or preventive healthcare institutions at their place of residence because of a lack of specialists or the remoteness of the populated localities. This is particularly characteristic of rural inhabitants. The result of all this is an underestimation of the number of sick children requiring special care.

According to the results of the Goskomstat survey, social disability allowances were received merely by 27 of the children (57.4% of those surveyed), including 18 boys (69.2%) and 9 girls (42.9%). The parents of over 40% of the children surveyed had not approached either healthcare institutions or social protection agencies. Correspondingly, these children were not included in statistical reports on the number of disabled children. The disabilities of all the children living in urban localities had been registered, while the corresponding figure for children living in rural areas was only 47.3%. It should be stressed that approximately 15% of these children have severe disabilities (palsy) and are bedridden. It should be noted that the percentage of parents who did not approach the healthcare institutions or social protection agencies was also high in previous years, including in the Soviet times.

The survey of families on child disability issues showed that many parents speak calmly, without anxiety, about their children's conditions and their causes. In answer to the question: "What measures and actions are you planning to take in the future?", the parents asked the interviewers for help in filling in the documents (30% of those surveyed).

All this testifies to the low level of activity among the population. For this reason, in earlier years, healthcare workers would do intensive house-to-house checks in order to identify sick and disabled children for annual health checks.

There are many causes of child disability. According to their prevalence in Tajikistan, they can be grouped as follows:

• Nervous and mental diseases, including infantile cerebral palsy (ICP), birth brain injuries, the residual effects of poliomyelitis, and others;

• Surgical, including arthrogryposis, dislocation of the hip joints, anomalies of the limbs, amputation of limbs as a result of an accident;

• Diseases of the hearing organs;

• Diseases of the visual organs;

• Diseases of the internal organs, including congenital heart disease, kidney pathologies and others.

As research by experts in the sphere of child disability and data of the survey by Goskomstat of the Republic of Tajikistan have shown, one of the main causes within the structure of diseases inducing child disability are nervous and mental diseases. These account for over 50% of all the causes. The most widespread nervous disease in childhood is infantile cerebral palsy. This combines neurologic symptoms, differing in etiology and pathogenesis, the localisation and nature of the defects, and having in common only their manifestations immediately after the birth of the child. ICP is the most frequent pathology with which patients are admitted to the neurological department. Thus, according to research by medical personnel of outpatient polyclinic No. 8 in the city of Dushanbe, in the year 2000, the share of sick children with an ICP diagnosis was about 40% of all causes of

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nervous and mental diseases; about 30% are children with brain injuries, about 7% with the residual effects of poliomyelitis.*

Children with ICP are kept under observation for a long period of time and require special social and rehabilitation measures. Treatment starts in the maternity home, continues in the department for newborn pathologies, in specialized kindergartens, schools and the Almasy residential school (internat). A large proportion of the patients need to be registered as disabled since childhood, because corrective therapy has little effect. The treatment of patients with ICP lasts for years and is not always accepted by the parents as it should be.

Another widespread disease leading to disability is epilepsy. Among the children treated in the neurological department of the city of Dushanbe from 1997 to 2000, children with epilepsy and convulsive disorders accounted for 20% (253 children). Of these, 32.4% had epilepsy as an independent disease, while 54.9% had suffered birth injuries or later brain injuries, and 12.6% had suffered a neurological infection.*

About 50% of the surgical pathologies consist of congenital diseases. According to the data presented on the structure of the causes of child disability, surgical pathologies (according to different sources) vary between 5% and 34%. Such fluctuations depend, first, on the source of the information and its specialization in the treatment of sick children with surgical pathologies. Second, as the Goskomstat survey showed, parents do not always approach healthcare facilities if their children suffer from such pathologies. About 45% of the children surveyed who were not registered as disabled suffered from surgical pathologies.

Among diseases of the internal organs leading to disability, congenital heart disease accounts for about 60%.*

* "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001. * "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001. * "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001.

Cause-specific structure of child disability

Surgical pathologies

34%Neurologicaland mental

diseases54%

Diseases of the internal organs

4%Diseases of thehearing organs

6%

Diseases of thevisual organs

2%

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According to the data of the survey mentioned above, 44.7% of parents named congenital pathologies as the cause of the disability, 38.3% consider it to be the result of a disease, 12.8% – birth injuries and 4.3% – the result of wrong rearing.

The data obtained from different sources testify that the incidence of diseases and pathologies leading to child disability in Tajikistan is higher among boys than girls. From 104 to 107 boys are born for every 100 girls in the Republic, and analysis of the data from the child disability survey shows that there are 124 disabled boys for every 100 disabled girls. According to health institutions in the city of Dushanbe, in the year 2000 the ratio was 133 to 100 (684 boys and 514 girls).*

This ratio is substantially different, however, among registered disabled children. The reason for this is that parents of boys with health problems turn for medical assistance more often than those having afflicted girls. According to the survey by Goskomstat of the Republic of Tajikistan and data presented by an outpatient polyclinic in the city of Dushanbe, the number of boys registered as disabled is double the number of girls.

The age structure of disabled children also has its own specifics. According to available sources, the highest proportion of disabled children is in the 7-15 age group – about 70-75%, whereas children under 7 years of age account for 25-30%. The reason for this situation is generally the fact that parents delay approaching preventive healthcare institutions.

The age composition of children with mental and physical handicaps (based on the survey by Goskomstat of the Republic of Tajikistan, persons)

Child disability is a global problem for modern medicine. It remains one of the main medical and social problems in Tajikistan.

* "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001.

Девочки

0 10 20

0-4

5-9

10-15

Мальчики

01020

0-4

5-9

10-15

оформлена пенсия всего

Boys Girls

Receive pension Total

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II. FACTORS BEHIND CHILD DISABILITY AND SOCIAL ISOLATION

Indicators of children's health are undoubtedly one of the main signs of the overall health status of the population. The birth of a healthy child creates the chief preconditions for its further normal development, especially since the foundations of physical and mental health are laid in early childhood. The birth and upbringing of a healthy child largely depend on the family's economic status, the parent's educational level and state of health, especially those of the mother, the course and management of the pregnancy, labour and post-natal period, accessibility of quality medical and obstetric care.

The rise in the number of disabled children in Tajikistan is influenced, above all, by the following factors: � the level of socio-economic development; � the state of the nature environment; � demographic factors; � the level of drug addiction; � the standard of the population's sanitary culture.

The impact of these factors tells on the material and living conditions of the family, the rise in the number of infectious diseases that were previously overcome (diphtheria, malaria, typhoid, cholera, and tuberculosis), sexually transmitted diseases, and the spread of drug abuse. These factors exert a negative influence on pregnancy – among them are malnutrition and deficient diet, and poor living conditions. Frequent deliveries and the number of children in the family sometimes prevents the mother to devote sufficient time to each individual child. One of the reasons for the rise in early child disability is the spread of intermarriages and the fact that parents delay turning to medical institutions for assistance. These factors are of tremendous and sometimes decisive significance for the morbidity, mortality and child disability rates.

The idleness of industrial facilities and a substantial drop in production in 1989-2001 were responsible for a sharp decrease in the volume of harmful discharges into the atmosphere. Over this period, the discharge of harmful substances from stationary sources of atmospheric pollution fell by over 30% to 32,200 tonnes in 2001. Today, one of the chief sources of pollution is, of course, motor transport. Exhaust gases discharge nitric and carbon oxides, benzpyrene, hydrocarbons and aldehydes into the atmosphere. The overall volume of harmful discharges from motor transport polluting the air basin is maintained at roughly the same level, fluctuating between 65,000 and 84,000 tonnes a year (Appendix).

In recent years, harmful discharges from house heating systems and other facilities have greatly contributed to atmospheric pollution. In towns, sometimes fallen leaves are burned in the street. The smoke carries into the atmosphere the salts of heavy metals and other harmful substances absorbed by the leaves. This worsens the condition of the atmosphere and also results in a wider spread of allergies.

The population of Tajikistan is not adequately supplied with clean drinking water – less than 60% of the population use piped water for their household purposes, while 40% take their water directly from unprotected sources: rivers, canals, irrigations canals and other sources that may not meet sanitary standards. About 30% of the water pipe networks do not function for a variety of reasons, including a lack of spare parts for the equipment. The effectiveness of the treatment plants is no more than 30-40%. The deficit of chlorine-containing reagents and coagulants also has a negative impact on the quality of mains water. As a result, there has been a rise in diseases connected with the use of poor quality water. These are intestinal infections in particular: bacillary dysentery rose

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by 30% and salmonellosia by 26%; in 1997, there were 500.7 cases of typhoid per 100,000 population, in 2001 – 50.7, and in 1996 there were 5.8 deaths from typhoid per 100,000 population.

As a result of insufficient irrigation work and innovations in agricultural technology, the ground water levels have risen, thereby promoting the formation of dangerous bodies of water, which have created favourable conditions for the growth and multiplication of malaria mosquitoes. In 1997, the incidence of malaria was 150 times higher than in 1989, amounting to 496.9 cases per 100,000 population. Measures taken in the Republic to prevent malaria have produced marked results. In 2000, the incidence of malaria fell to 308.1 cases per 100,000 population and in 2001 – to 102.6 cases. Deaths from malaria in 1996 amounted to 0.86 per 100,000 population.

The rise in the number of disabled children is also connected with political conflict and its consequences in Tajikistan. In 1993, there was a rise of 33.7% in the number of children aged 0-15 receiving disability pensions compared with 1992.

The material status of families exerts a major influence on the rise in morbidity and disability. According to research into the standard of living, carried out by the World Bank in 1999, about 83% of the country's population fell into the category of poor. The average per capita monthly income was 12,900 Tajik roubles (USD 10). The figure for the urban localities was 15,400 Tajik roubles (USD 12.4) and that for rural area – 12,300 Tajik roubles (USD 9.9). According to the survey of the household budgets, in 2001 the average per capita household income was 24.3 somonis (USD 8.9).

This situation is exacerbated by unemployment. Thus, out of 42,900 unemployed, registered with the employment agencies, 4,800 (11.1%) were parents with small and disabled children. The average unemployment benefits was 5.6 somonis (USD 4.5) in 1999 and 12 somonis (USD 5.1) in 2001. Supplements for dependents were, on average per month, respectively 0.9 somonis (USD 0.7) and 6.7 somonis (USD 2.8).

A direct dependence can be traced between the average per capita family income and the size of the family: the bigger the family and the more children there are, the lower the income (Appendix).

In families with a large number of children, the parents have fewer opportunities to pay due attention to each child; there is greatly restricted access to such highly important social services as healthcare and education, as well as to a proper diet. Estimates of the daily ration of families (from a sample survey of households) show that, on average, the level of consumption of protein and fats

Incidence of individual infectious diseases (per 100,000 population)

0200400600800

1000120014001600

1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001

Acute intenstinal infections Typhoid and paratyphoids, A,B,C

Diphtheria Viral hepatitis

Malaria

13

is lower than the norms for each member of the family. The diet of families consists mainly of carbohydrates (flour goods). The share of the consumption of proteins is 9.7% and of fats – 18-19%, while that of carbohydrates is more than 71%. A fall in the consumption of milk and dairy products, meat, fruit and vegetables, prompts the conclusion that the child's body does not receive enough of calcium, iron and other macro- and microelements. The consumption of a large quantity of flour goods in combination with large amounts of tea, which contains substances hampering the assimilation of iron, leads to an increase in anaemia among both women and children.

A systematically unbalanced diet, shortage or excess of a some food ingredients (proteins, fats, carbohydrates, macro-elements, and vitamins) disrupts the metabolism, gives rise to irreversible processes and affects the health of children and women.

Anaemia at an early age leads to a rise in morbidity and mortality among children. Anaemic children demonstrate retarded psychomotor development. They do worse in school than healthy children and have difficulty in mastering the school programme. Studies have shown that elimination of the iron deficit does not result in full restoration of intellectual ability.

The problem of child disability is a major one within the system of motherhood and childhood protection. The right of mothers and children to health protection is secured in the law of the Republic of Tajikistan "On Protection of the Population's Health".

The health of a child depends on the health of the mother. The level of mortality and the frequency of neurological complications inducing disability, are relatively high in children born after a difficult pregnancy and pathological delivery.

In 1997-2001, a growth was observed in the number of births complicated by various pathologies – anaemia (by 40%), late toxicosis (80%), diseases of the urogenital system (40%), venal complications (100%) and haemorrhaging in the afterbirth and post-natal periods (70%).

It is quite difficult to analyse the cause and effect relation between infant and perinatal mortality drawing on current statistics. This is due to the large number of deaths of children under the age of 1 year, not registered with the State Registration Offices. According to the data of surveys conducted (MICS-2), the proportion of children who die before reaching their first birthday and not registered with the relevant authorities amounts to 70%. This is due to the rise in the number of unregistered marriages, home births, and the fact that the parents have to pay for registering births and deaths. In 1989-2001, there was a 50% drop in the number of registered marriages; the number of home deliveries rose to 47% of all births, while the number of registered deaths before the age of one year dropped by over 70% and in 2001 stood at only 2,500.

Within the structure of causes of registered early neonatal deaths of newborns (death during the first week of life), birth injuries account for about 20%, asphyxia for 13% and congenital anomalies for about 13% (of these, more than 40% are congenital anomalies of the circulatory system). Moreover, there has been a steady rise in the number of deaths of children with congenital abnormalities –

Births complicated by anaemia (per 1,000 births)

370,1 375,2467,0 522,6

528,8

0

200

400

600

1997 1998 1999 2000 2001

14

from 1989 to 1996, their numbers increased by 21%, while their share within the structure of death causes rose from 6.6% to 12.4%.

The main cause of infantile mortality during the first year of life is respiratory diseases (30-40%), the second – infectious and parasitic diseases (20-30%); the third, conditions arising in the perinatal period (17-25%). Congenital anomalies account for 2.5-4.5% of these deaths. During the period from 1989 to 2000, a growth was observed in the proportion of children dying from congenital anomalies and conditions arising during the perinatal period.

Living conditions also affect the health of women and children.

The cause-specific structure of neonatal mortality, %

Birth injuries16%

Other conditions arising during the perinatal periods

73%

Congenital anomalies

10%

Infectious and parasitic diseases

1%

The cause-specific structure of infantile mortality during the first year of life, %

Other31% Infectious and

parasitic diseases22%

Respiratory diseases24%

Conditions arising during the perinatal

period19% Congenital anomalies

4%

15

Due to their social status, women bear a heavy burden in running the household. They are often helped in this by children and adolescents. This work does not always have a favourable effect on their health. The lack of gas and power failures (especially in rural areas) mean that women use logs, straw and manure fuel for preparing the food, and thus suffer a harmful impact of smoke. According to MICS data, this applies to 61% of households: 16% in the towns and 77% in rural areas. Women and children also have to carry heavy weights (such as water for the family's needs). In addition to housework, many women in the rural areas of the country carry out heavy work in the fields, sometimes under harmful conditions resulting from the use of chemical pesticides and fertilizers. The production of a number of agricultural crops, such as the growing and processing of tobacco leaves and rice, is also included among harmful types of agricultural production.

The low material provision for families and social institutions restricts the already limited opportunities for disabled children to take an active part in the life of society and is one of the reasons for their social isolation.

The possibility of educating disabled children in residential institutions and in general education schools does not totally resolve the problem of the social isolation of these children. Only 25% of disabled children actually attend school.

The Law of the Republic of Tajikistan "On Social Protection of the Disabled" (Articles 24, 25, 26, 27, 28, 29, 30 and 31) stipulates the conditions and privileges for disabled children to enter and study in secondary specialized and higher educational institutions. They can enter these educational institutions without competing with other entrants and without taking entry exams. The number of disabled children wanting to continue their studies in these educational institutions is, however, very small. In the 2001/2002 academic year, for instance, only 15 disabled children studied in secondary educational institutions, 13 of them being girls (the respective figure for 1999/2000 was 57). In the 2001/2002 academic year, merely 9 disabled young people, one of them a girl, studied in higher educational institutions.

Articles 29, 61, 67, 85, 94, 99 and 152 of the Labour Code of the Republic of Tajikistan stipulate the conditions for the work, leisure, remuneration and benefits for working disabled. At the same time, there is a problem in finding jobs for disabled children when they finish their education. There are not many enterprises in the Republic where the labour of disabled people can be used. There are

Distribution of the population, by availability of residential amenties, %

0

20

40

60

80

100

120

Based on the 1989 census Based on 1999 living standardsurvey

Electricity

Gas or floor-standing electriccooker

Peped water

Sanitation

Central heating

Hot water supply

16

only small factories manufacturing stationery and domestic items, so it is becoming increasingly difficult to find job.

The Society for the Blind runs two enterprises for people who are disabled because of their sight. In 2001, 513 jobs were envisaged in these enterprises, 174 (36%) for women. For economic reasons, however, these enterprises are not currently operating at full capacity and the actual number of jobs there is only 132.

The job placement services of the Tajik Ministry of Labour and Social Protection have planned measures for supporting socially unprotected categories of people. Quotas are set for institutions and organizations to provide jobs for people in need of social protection (including the disabled). About 10% of these quotas are set for disabled people. In 2001, for instance, 722 job quotas were set, including 126 for disabled, and 100 people actually found jobs.

One of the problems of the social isolation of disabled children is transport and related daily trips to study and, subsequently, to work (commuting). The Republic lacks means of transport with facilities for the disabled.

Certain non-governmental organizations (NGOs) and public foundations in Tajikistan engage in the problems of disabled children:

• NGO Zdoroviye – a medical and social project to integrate a group of disabled children into society; the writing of methodological textbooks for the parents of disabled children;

• NGO Istikol – protection of the rights of talented children, including those with disabilities;

• NEKI Assistance Foundation – provision of socio-legal and medical assistance. At kindergarten No. 38, there is a Care Centre for Disabled Children, where psychological rehabilitation is carried out. Food is also provided for these children.

• The Public Fund of the children's Theatre of Miracles holds concerts for orphaned and disabled children and children from poor families. They assist with clothing, medicine and school items.

• NGO Shafakat develops programmes for organizing the teaching of sign language and lessons in speech development and hearing perception for the staff of two residential schools for deaf children and those with poor hearing. In the Leninsky District, a group has been organized for training young people who have finished school in various trades.

III. DISABLED CHILDREN IN RESIDENTIAL SCHOOLS AND SPECIALIZED PUBLIC INSTITUTIONS

According to the Law of the Republic of Tajikistan "On Pensions", if the parents or guardians of disabled children so wish, the children may be kept in specialized children's preschool institutions, residential schools, children's homes and residential homes at the government's expense.

Some disabled children are brought up in specialized public institutions in the Republic of Tajikistan. Depending on the services they provide or tasks they fulfil, and the age of the children, these institutions come under three ministries:

• Infant homes for children under the age of 3 or 4 come under the Ministry of Public Health of the Republic of Tajikistan;

• Residential homes for mentally retarded children come under the Ministry for Labour and Social Protection of the Republic of Tajikistan;

• Children's homes and schools for children with mental and physical handicaps between the ages of 4 and 6 and between 6 and 15-16 years, come under the Ministry of Education of the Republic of Tajikistan.

17

There are no private residential homes for disabled children in Tajikistan.

Over the last eleven years, there have been substantial fluctuations in the numbers of specialized institutions and the number of children in them, with both figures having a tendency to fall. Under the conditions of the economic crisis and of the transition period, these institutions are encountering serious difficulties due to limited financing, as a result of which the services they provided have not been of the required standard – a proper diet, heat and lighting of premises have not always been guaranteed and bedding and furniture has worn out. In connection with the population outflow from Tajikistan, there is an acute shortage of skilled staff. In addition, the personnel in these institutions earn a very low wage.

In accordance with the Statute, the Ministry of Public Health and its subdivisions, in conjunction with the social protection agencies, carry out coordination work in determining the placement of children with physical or mental handicaps in government-run specialized children's preschool institutions, residential schools, infant homes and residential homes for children.

Ministry of Health of the Republic of Tajikistan is in charge of infant homes, where orphaned children, children from single-parent families, and children with mental or physical disabilities live.

Until 1998, there were 4 infant homes in the Republic which, in 1997, catered for 145 children. During the period from 1989 to 1997, the number of children there fell to less than a third. In recent years, there has been an increase in the number of children placed in these institutions by their parents and the number of orphaned children, left without parental care. In 2001, there were 5 infant homes in Tajikistan, catering for 355 children: in the age of 0-3 and older: of them, 21 in the age of 0-12 months, 84 between the ages of 1 and 3 years, and 250 over the age of three years. Two of the infant homes are located in Dushanbe, two in Khudjand and one in the town of Tursunzade.

The children in these homes are given regular health checks by medical specialists. In 2001, 355 children underwent health checks: 23.3% were found to have retarded mental development; 16.6% – retarded physical development; 10.4% – anaemia; 9.3% nutrition disorders and 6.5% – rickets. In the structure of disability causes, 60-90% are pathologies of the central nervous system (CNS) and the locomotor system.

Children in infant homes are supported fully by the government. In 2001, 105,900 somonis were allocated out of the budget for maintaining these homes, which is equivalent to about 0.82 somonis a day per child (including the salaries of the staff).

The number of children in specialized institutions, persons

0500

10001500200025003000350040004500

1989

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

Infant homes

Residential homes

Schools of children withdevelopmental defects

18

Infant homes also fulfil the functions of temporary care institutions. To support families, children may be accommodated temporarily, until they reach a certain age or until a favourable time, when the parents can take the child home. Parents can visit their children at set visiting days and hours.

The number of children taken home from an infant home by their parents is tending to fall, while the percentage of adopted children has risen.

1999 2000 2001

Total number of children leaving infant homes during the year, persons

239 224 180

Including:

- taken home by their parents 195 142 130

As a percentage of the total number of children 81.6 63.4 72.2

- taken for adoption 13 18 34

As a percentage of the total number of children 5.4 8.0 19.0

- transferred to an educational institution on reaching certain age 22 58 11

As a percentage of the total number of children 9.2 25.9 6.1

- transferred to a social protection institution 9 6 5

As a percentage of the total number of children 3.8 2.7 2.8

Children transferred to residential homes run by the Ministry of Labour and Social Protection are disabled children with serious mental and physical handicaps. The proportion of such children is 3-4% of the total numbers transferred from infant homes.

In 2001, there were 9 specialized government-run institutions (residential homes) of the Ministry of Labour and Social Protection of the Republic of Tajikistan providing stationary assistance to disabled people and pensioners in need, such as the incapacitated, elderly people without families, mentally retarded children and children with physical defects, in need of constant care.

The same year, 636 people lived in residential homes for adults, 116 children in children's residential homes, including 74 mentally retarded children and 42 with physical defects. Overall, from 1989 to 2001, the number of disabled children in these homes fell by about 50%. As of October 1, 2002, there were 151 children living there, of whom 23.8% suffered from infantile cerebral palsy (ICP), 57.6% from oligophrenia, and about 20% from other diseases. In the main, these were severely disabled children, so that, in the majority of cases, they could not be brought up by their families. In other cases, the parents or relatives had abandoned the child. On reaching the age of 16, most of these children are transferred to residential homes for disabled adults.

During 2001, 107,200 somonis were allocated from the state budget for maintaining disabled children in these three specialized residential homes of the Ministry of Labour and Social Protection of the Republic of Tajikistan, including for the salaries of the staff. This was equivalent to about 2.5 somonis per day per child.

Apart from residential homes, the Ministry of Labour and Social Protection also runs a specialized lycée, which is so far the only such institution. This is a first experiment in continuing the education of disabled children in various trades, which might do much to help such children adapt to beginning their adult lives.

19

The lycée has 205 students from the age of 14-18 and older; of these, 123 are disabled, including 28 girls (23.6%). In the structure of disability causes, infantile cerebral palsy accounts for the disability of 91 of the youngsters (74% – including 19 girls), amputation of hands and feet – of 11, including 8 girls, deafness – of 2, blindness of 1 and the remainder suffer from other diseases. The children receive a general secondary and secondary technical education in the following professions: bookkeeper, tailor, radio and TV repairpersons, and shoemaker. Special classrooms and laboratories have been equipped at the lycée; there are individual study rooms and a library. This specialized lycée has a subsidiary in the town of Taboshar, in the Sogdia Region, where 17 children study, including 8 disabled children with mental development defects. All expenses for the upkeep of the students are covered by the government. In 2000, the lycée's budget amounted to 62,400 somonis or 0.83 somonis per day per child.

Residential schools run by the Ministry of Education of the Republic of Tajikistan for children with mental and physical handicaps have not undergone any marked changes over the last decade. In 2001, there were 11 residential schools in the Republic, catering for 1,526 children. In comparison with 1989, the number of children in such schools had fallen by over 50% and the number of schools by 3 units. This in no way indicates, however, that the number of children requiring special development conditions had fallen or that there was no longer any need for such institutions. It is connected, to a certain extent, with the reluctance of parents to hand over their children to these institutions, owing to the deterioration in the living conditions for children in institutions of this type.

Residential schools are in an acute need of skilled teaching staff, textbooks and teaching aids (since current stocks are wearing out). In 2001, 117,900 somonis were allocated from the state budget to maintain the residential schools, this being equivalent to 0.21 somonis per day per child. They are also partially maintained from the schools' subsidiary farms.

The Ministry of Education of the Republic of Tajikistan also runs residential schools for orphaned children, children from single-parent families, children left without parental care and children from poor families. At the beginning of the 2002/2003 academic year, there were 52 such residential schools, catering for 9,036 children, including 2,487 girls (27.5%). In these institutions, orphaned children account for 17% of the total number, while the rest have either one or both parents. There are also 35 school-age disabled children studying here. These residential schools give an incomplete or complete secondary education.

Over the last two years, there has been an increase in the number of residential schools, primarily in connection with the decision of the Republic's Government to provide material assistance to poor families. Children in residential schools are provided with food and clothing and study the usual school programme. On Sundays, the children are allowed to spend the day with their families.

Many parents who placed their children with a residential school are unable, because they are too busy, to help their children with their studies and believe that they will be taught better in such institutions. Others count on assistance from public institutions in providing the children with food and clothing. According to a study conducted by some non-governmental organizations (NGOs), 62% of parents whose children are in such institutions have agreed that, as soon as the family's financial situation improves, they will take the child home.

The financing of 12 residential schools comes from the republican budget and 40 from local ones.

In addition to the institutions listed above, there are also residential schools catering for more than 500 blind children (2000 data) run by the republican public organization for the disabled.

The financing of specialized institutions out of the budget is, of course, inadequate because of the economic difficulties the country is encountering at the moment. Considering this, by special Resolution of the President of the Republic of Tajikistan No. RP-330 of February 23, 2001, each ministry and department shall take care of specific social institutions for the purpose of supporting special pre-school, school, medical and social and in-patient medical institutions of the Republic

20

and providing them with constant charitable assistance. The assistance rendered in this way is quite substantial and does much to help the given institutions operate better. Specialized institutions also received humanitarian aid from international charitable funds and non-governmental organizations, which partially resolve their problems connected with supplies of foodstuffs, medicaments, toys, computers and equipment.

IV. DISABLED CHILDREN IN FAMILIES AND COMMUNITIES

Every child has the right to a home, which actually is the best living environment for the growth and development of the child, the place where his rights are protected. The total number of disabled children living in families in the Republic at the present time is difficult to determine, since this problem has not been studied in detail.

The majority of children with mental and physical handicaps that are not serious live with their parents and brothers and sisters. Neighbours are kind to such children and it is a national Tajik tradition to give a piece of bread or other food and clothing to a child in need. If the family is well-off enough to shoulder the expenses of the special care required in bringing up and educating a disabled child, as a rule such children are not placed in residential institutions.

Recently, more efforts have been focused in Tajikistan on supporting the idea (within the framework of the system of child protection) of keeping disabled children within their families. It is recognized that it is better for the child to stay with its family than to be sent to specialized children's institutions. For this purpose, measures are to be provided for in the future for improving the economic conditions of families with disabled children. The government is trying to create the conditions to ensure each child enjoy equal opportunities for full development.

Disabled children under 16 years of age have the right to a social pension (Article 109 of the Law "On Pensions"). However, under the difficult economic conditions in which Tajikistan is developing social assistance to families with disabled children is negligible.

The social allowances allocated by the government to the disabled, including children, are minimal payments. Under the legislation, the size of the disability allowance for a child corresponds to the minimum old-age pension. The average size of the allowance for a child disabled since childhood was:

1998 1999 2000 2001 Average social allowance for child disabled since childhood, somonis per month

1.92 1.94 2.01 2.03

In US dollars 2.5 1.6 1.1 0.9

Since June 2002, the size of the social allowance was raised to 5 somonis.

A family in which there is a physically or mentally handicapped child is supported by relatives, neighbours, and members of the board of mahalla (local, territorial) councils. Such families are the first to receive humanitarian aid from international and public organizations in the form of foodstuffs, clothing and medicaments. This is not, however, a constant source of support.

According to the State Statistics Committee questionnaire survey, 51.1% of parents (88.9% of those who have filed for the allowance) consider it necessary to increase the disability allowance for a child and 29.8% of the parents ask for assistance in filing the documents necessary for receiving a social allowance (74% of those who have not yet done so).

The Labour Code of the Republic of Tajikistan (Articles 159, 161, 162, 168, 169, 170, 171 and 172) envisages the special work schedule, leisure and salary conditions for one of the working parents or

21

guardians of disabled children (under the age of 16) as well as benefits in the form of additional holiday, an additional day off work, and a shorter working day.

The Law of the Republic of Tajikistan "On Social Protection of the Disabled" envisages educating and schooling disabled children at home if there is no opportunity to do so in children's institutions, children's homes and residential schools. Moreover, account is taken of the severity of the disease and the parents' wishes. When necessary, various services of preventive healthcare institutions may be rendered at home.

Medical services

Children with physical and mental developmental defects have the right to receive medical and social assistance. In healthcare facilities a doctor responsible for work with disabled children, including establishing disability and re-certification of disabled children is appointed by order of the head of the institution. This contingent of children belong to the high risk group with respect to social adaptation, so they require special attention from catchment-area physicians and nurses, too.

There has been a decline in the preventive healthcare assistance rendered to disabled children due to economic difficulties. Some help is being offered to disabled children in the municipal outpatient polyclinics: comprehensive health checks by specialists and paediatricians, laboratory tests to disclose anaemia or diseases of the urinary tract. According to the data of Children's Polyclinic No. 10 of the city of Dushanbe, 32% of all medical assistance is carried out at home. In order to carry out health checks, medical personnel visit all children suffering from serious illnesses but undergoing treatment at home, those discharged from hospitals and suffering from chronic diseases or having development deviations or health problems (with affected CNS, with physical handicaps and unable to visit the outpatient polyclinic).∗

As prescribed by a physician, disabled children with perinatal damage to the central nervous system receive a complex of rehabilitation measures: massage and exercise therapy, physiotherapy, heat- and reflexotherapy.

From 1996 to 2000, however, owing to economic problems, restorative treatment was not provided in sanatoria or physical therapy institutions.

The problem of medical assistance to disabled children is particularly acute in rural areas, where more than 70% of Tajikistan's population live (over 4 million people). Medical institutions in rural areas, serving a specific community, lack specialists who could provide the child with specialized assistance (treatment). The remoteness of healthcare facilities from populated localities also restricts access to medical assistance for rural inhabitants. Parents have to spend a substantial amount of time and funds on transport, accommodation and food, when a child have to undergo tests in a specialized city preventive healthcare institution.

According to the State Statistics Committee questionnaire survey, 25.5% of parents believe that the medical assistance to disabled children should be improved and 8.5% believe that the treatment should be free of charge.

The Law of the Republic of Tajikistan "On Physical Training and Sport" makes the local (regional) government agencies responsible for creating the conditions for disabled people to engage in physical exercise and sport, have access to health-building and sports facilities, for the account of the local budget.

∗ "Problems of child disability and the medical and social aspects of infantile mortality in Tajikistan", a collection of materials of a scientific and practical conference, Dushanbe, 2001.

22

Educational services

Special pre-school institutions for children with hearing defects, special groups for children with infantile cerebral palsy (ICP), specialized kindergartens for TB positive children and others functioned in Tajikistan throughout the period of the 1980s and early 1990s.

It is currently becoming difficult to maintain special groups for such children in mainstream pre-school institutions of large cities, since problems arise finding the required number of children to fill them and supplying them with specialists. The lack of part-time specialists, such as speech therapists, children's psychologists, allergy specialists and others, at children's pre-school institutions means that children with chronic forms of illness are checked by specialists only from time to time.

The lack of children's preschool institutions specializing in rehabilitation of children with ICP, with depraved eyesight and hearing, creates substantial difficulties for the parents of disabled children or children with chronic diseases.

In rural areas, this problem is even more acute, as was reflected in the results of the survey. According to the State Statistics Committee questionnaire survey, among children aged 0-6, not a single child attended a preschool institution. The reason for this, according to the 53% of the parents (8 persons) was the lack of such institutions. These were all people living in rural areas.

The situation with respect to schooling for disabled children is equally bad. According to the results of the MICS-2000 study, in the majority of cases, parents do not send mentally handicapped children to mainstream schools, explaining that it is difficult enough for the children to understand anything, so why create more difficulties for them in mastering the school syllabus? On the other hand, specialized general educational institutions are concentrated in the cities. Parents of disabled children living in remote and mountain communities do not, as a rule, turn for help to such institutions.

Recently, within the framework of the work of the National Commission for the Rights of the Child under the Government of the Republic of Tajikistan focused on raising awareness among the families with disabled children who cannot attend educational institutions, at the request of local councils (mahallas) and, of course, the parents, teachers provide instruction to such children according to individual study programmes. At the beginning of the 2001/2002 academic year, 20 children were following special individual study programmes, but at the beginning of the 2002/2003 academic year, the figure had risen to 560. These are mainly children living in the Sogdia Region (508 children), Hatlon Region (41 children) and regions of republican subordination (11 children).

Parents who are not indifferent to the fate of their children do their best to educate them, if not in specialized schools, then at least by engaging teachers from school. It should be noted that, as a rule, the teachers charge a sum agreed with the parents for their services, so only well-off families can afford this. At the same time, the majority of low-incomes families do not yet receive any substantial material or psychological assistance from social or medical institutions or from agencies in charge of general educational institutions.

According to the State Statistics Committee questionnaire survey, 25% of the children aged 7-15 attend school, while 75% undergo no organized schooling. Among the reasons that the children do not attend children's general educational institutions, 59.5% (22 persons) of the parents named the following: "Cannot attend for health reasons", 13.5% (5) considered education to be pointless, and 5.4% (2) stated the absence of a specialized school.

Some 4.3% of parents each expressed the desire to receive support to the families of disabled children in one of the following forms: free services, assistance in acquiring clothing and footwear (orthopaedic) and provision with wheelchairs and crutches.

Analysis of the parents' responses arouse some concern because of their passive attitude to resolving problems involved in ensuring the conditions for the development and education of a

23

disabled child. During the course of the year, 46.8% of the parents surveyed turned to healthcare facilities for help, 25.5% to social protection agencies, and 10.6% for additional assistance to educate their children.

V. POLICY GOALS WITH RESPECT TO DISABLED CHILDREN

In September 2000, in Geneva, the sitting of the UN Committee on the Rights of the Child, for the first time ever heard a national report by Tajikistan. In accordance with the Committee's recommendations on the results of the country's hearing, measures were taken to further implement the provisions of the Convention.

In July 2001, a Conference was held on protecting the rights and interests of the child, with the participation of representatives of the Government of the Republic of Tajikistan, ministries and departments, non-governmental organisations (NGO), heads of the UN Children's Fund in Tajikistan, and a large number of children themselves.

At the conference, the results were presented of three separate projects carried out by different NGOs and the Open Doors Bar Association, on alternatives to keeping children in public care. A review was presented of Tajik legislation on issues of children with special needs, as were the results of the Multi-Indicator Cluster Survey (MICS-2) on the situation of women and children in the Republic of Tajikistan. At the Conference, the children themselves participated in the debate with the representatives of government agencies on many of the issues of interest to them.

On September 7, 2001, Resolution of the Government of the Republic of Tajikistan No. 423 "On Establishing a Commission Under the Government of the Republic of Tajikistan on the Rights of the Child" was passed, setting up the commission of 16 responsible representatives of different ministries, departments and public, including non-governmental organizations. The Regulation on this Commission was approved, defining its activities as being designed to implement the international obligations Tajikistan has assumed on the rights of the child.

In June 2002, the Parliament of the Republic of Tajikistan ratified two Optional Protocols to the Convention on the Rights of the Child: • Participation by children in armed conflicts; • The trafficking in children, child prostitution and child pornography.

In addition, the Convention of the International Labour Organisation (ILO) on the Prohibition and Immediate Action for the Elimination the Worst Forms of Child Labour was adopted by Tajikistan.

This list of actions taken by the government goes is not exhaustive. It is clear from the above that major significance is attached to the safeguarding the rights of the child to life, survival, parental care, and the like, and that specific steps have already been taken to improve the situation of children in Tajikistan.

It might be added that one of these steps is the publication of the collection International Legal Acts on the Rights of the Child. It was published in the Tajik and Russian languages for subsequent distribution among users and the broad public, to enhance the awareness of Tajik population of such important international documents as the Convention on the Rights of the Child and the Optional Protocols to it.

Centres or offices for providing services to the family and the public must be opened in each district in order to assist and inform the population on issues relating to the protection of the rights of their children, disabled children, and also to raise the literacy of parents in legal matters. These centres (offices) must be staffed with trained sociologists and psychologists with counselling skills. The work to train child psychologists is being carried out by the Association of Psychologists in the city

24

of Dushanbe. If these centres prove effective, in the future they may be transformed into Children's Institutes, with precisely defined duties and rights.

On November 5, 2002, Resolution No. 436 of the Government of the Republic of Tajikistan "On Approving the Strategy of the Republic of Tajikistan for the Protection of the Health of the Population During the Period up to 2010" was adopted.

One of the areas of healthcare reform in Tajikistan is establishing the family healthcare system, the training of family doctors and family nurses. This should also promote an improvement in the quality of medical care, integration of the healthcare services and a drop in the morbidity rate and causes of child disability. The executive authorities have been entrusted with adapting the tasks of this Strategy to the specific local conditions and requirements, and assuring their implementation.

An attempt is being made to set up a diversified specialized children's preschool educational institution in the city, but the project is presently faced with difficulties in enrolling a sufficient number of children in such an institution and staffing it with specialists.

In the future, much still has to be done to study problems of child disability in the country. One proposal to be submitted for consideration by the UN Children's Fund is a large-scale and targeted survey of child disability in families of the Republic of Tajikistan, which will make it possible to assess the scale and causes of disability, especially of persons not registered with medical institutions. Such a survey will allow member states to expand their opportunities and knowledge and to broaden their experience in this field.

> > >

We will appreciate any comments on the analytical report and welcome any suggestions. We wish to express our gratitude for the financial support provided for the preparation of the materials.

November 25, 2002

25

APPENDIX

26

Data on child disability from various sources

No. of children receiving a disability pension aged 0-15

Year Average annual no. of

children aged 0-15

Persons Per 1000 population

No. of children

aged 0-17

certified as

disabled for the

first time during

the year

No. of children

aged 0-14

certified disabled

Data of the Dushanbe

PHI*

Data of the Dushanbe outpatient polyclinic

No. 8

Data of the Dushanbe outpatient polyclinic

No. 10

1989 2,333,964 6,265 2.68 1990 2,404,526 6,743 2.8 1991 2,473,860 8,042 3.25 1992 2,529,940 8,963 3.54 1,902 1993 2,560,199 11,986 4.68 4,325 1994 2,588,681 12,748 4.92 1,512 1995 2,626,674 11,656 4.44 1,565 1996 2,657,991 12,177 4.58 1,353 6.1 1997 2,684,297 22,559 8.4 1,275 6.2 1998 2,717,254 17,825 6.56 1,265 5.8 6.6 1999 2,748,907 16,139 5.87 1,366 8,411 6.0 4.7 6.8 2000 2,767,262 17,444 6.3 1,473 8,058 6.06 5.0 6.7 2001 2,771,206 19,243 6.94 2,130 10,435 5.0

* Preventive healthcare institution.

Cause-specific structure of child disability

Data of the Dushanbe PHI

Data of the Dushanbe outpatient

polyclinic No. 8

Data of the Dushanbe outpatient polyclinic

No. 10

Survey questionnaire

Nervous and mental disorders

59.2 59.8 (55) 47.9 (99) 53.2 (25)

Diseases of the sight organs

7.3 2.2 (2) 14.2 (29) 2.1 (1)

Diseases of the hearing organs

8.3 4.3 (4) 14.2 (29) 6.4 (3)

Diseases of the internal organs

7.3 13 (12) 13.4 (28) 4.3 (2)

Surgical pathologies

4.8 20.6 (19) 8.8 (18) 34 (16)

Total 1,198 92 203 47

27

Harmful discharges into the atmosphere from stationary and mobile sources

(Thousand tonnes per annum) Year All sources Including:

Stationary Mobile 1990 115.4 1991 100.5 1992 80.8 1993 6.8 1994 70.0 1995 43.8 1996 30.1 1997 116.3 32.0 84.3 1998 114.5 32.5 82.0 1999 111.5 35.1 76.2 2000 94.6 29.6 65.0 2001 116.1 32.2 83.9

Distribution of households by various types of fuel used for preparing food (based on data of the Multi-Indicator Cluster Survey, carried out in July 2000,

in conjunction with UNICEF (%)

Total Including: Urban population Rural population Electricity 26.6 47.4 19.1 Natural gas 11.9 36.3 3.1 Wood 42.0 13.3 52.4 Straw/dung 18.8 2.4 24.7 Other 0.7 0.6 0.7

28

Distribution of households by use of drinking water from different sources

(based on data of the Multi-Indicator Cluster Survey, carried out in July 2000, in conjunction with UNICEF, %)

Total Including: Urban population Rural population

Indoor piped water 17.3 49.7 8.3 Outdoor water conduit 20.9 32.3 17.7 Public standpipe 7.8 5.0 8.6 Well with a pump 6.1 3.6 6.8 Protected spring 3.1 0.9 3.7 Clean drinking water

56.9 92.9 46.9

Unprotected spring 3.6 0.9 4.3 Pond/river or stream 33.4 4.1 41.5 Brought in by tanker 3.2 0.2 4.0 Other 2.2 1.2 2.5

Distribution of families by monthly income and family size (based on data of a population living standards survey, carried out by the World Bank in 1999)

Including children of

Decile No. (10% of

families out of 2400

surveyed)

Average income per member of the family in decile, somonis

Total population

Children aged 0-14

Average family size,

persons aged 0-6

aged 0-14

People of pensionable

age

1 4.3 11.5 12.3 8.2 1.6 3.7 0.5 2 6.6 11.4 12.1 8.1 1.8 3.7 0.5 3 8.0 11.2 11.8 7.9 1.7 3.5 0.5 4 9.4 11.0 11.4 7.8 1.7 3.4 0.5 5 10.7 10.2 10.4 7.3 1.4 3.1 0.5 6 12.1 10.3 9.9 7.3 1.4 3.0 0.6 7 13.8 9.3 9.1 6.6 1.3 2.7 0.4 8 16.2 9.3 9.2 6.6 1.3 2.8 0.5 9 20.6 8.4 7.3 6.0 1.0 2.2 0.5 10 44.1 7.3 6.4 5.2 0.9 1.9 0.4

Total 12.9 100 100 7.1 1.4 3.0 0.5

29

Per capita consumption of foodstuffs

(based on the sample survey of households) (per annum, Kilograms)

1997 1998 1999 2000 2001 Meat and meat products 4.9 5.1 5.7 4.4 5.8 Milk and dairy products 46.8 47.2 55.1 64.9 49.9 Eggs, units 6 6 16 36 24 Sugar, including confectionary 7.4 5.9 6.4 6.7 7 Bakery products 147 152 167 148 150 Potatoes 25.0 22.3 24.1 37.8 26.6 Vegetables, melons, pumpkins, marrows 55.5 59.9 92.4 98.5 73 Fruits, berries, grapes 24.5 19.6 17.3 5038 35.5 Vegetable oil 9.8 7.9 9.5 10.2 9.2 Value of diet in kilocalories 1924 1855 Including from (%): Proteins 9.7 9.7 Fats 18.8 18.0 Carbohydrates 71.5 71.3

Distribution of the population by available household amenities

(%)

Based on 1989 population census of all families

Based on the 1999 living standards sample survey

Total Urban population

Rural population

Total Urban population

Rural population

Living in premises equipped with: Electricity 99.1 99.7 98.8 97.0 99.1 96.3 Central heating 17.9 52.2 1.7 4.8 12.4 2.4 Piped water 22.3 60.4 4.4 12.7 42.0 2.7 Sanitation 15.7 46.6 1.2 12.3 36.9 4.0 Hot water supply 12.0 36.7 0.4 6.0 13.9 3.3 Floor-standing gas or electric cooker

85.0 92.5 81.5 23.5 61.6 10.5

Bath or shower 14.7 43.7 1.0

Floor covering in homes (according to MICS-2 data (Multi-Indicator Cluster Survey)

carried out in July 2000 in conjunction with UNICEF)

Total Urban population Rural population Wood 52.7 83.3 41.7 Concrete/Cement 4.0 8.0 2.6 Earth/straw 43.0 8.7 55.3 Other 0.3 0.4

30

Quotas and assistance in creating jobs (vacancies)

With the assistance of the employment agencies

Year Total quotas set

Quotas for the disabled

Job placing through quota

system

Additional jobs created

Job placement in additional

vacancies 1995 1588 157 96 3 3 1996 2066 152 105 1997 1128 124 56 3 3 1998 621 54 49 13 13 1999 906 71 111 10 2000 861 105 44 12 23 2001 722 126 100 8 19

Number of unemployed registered with the employment agencies

Including those bringing up minors and disabled from

childhood

Total number of registered unemployed,

persons persons percent

Of these, single parents

Of these, women

1993 21,611 4,971 23.00 545 522 1994 17,279 2,881 16.67 524 281 1995 37,481 3,653 9.75 988 713 1996 45,711 7,451 16.3 1,667 1,102 1997 51,086 9,514 18.62 1,559 1,027 1998 54,101 6,285 11.62 1,900 1,282 1999 49,720 4,238 8.52 961 684 2000 43,255 4,215 9.74 1112 797 2001 42,941 4,750 11.06 1449 1,151

31

Types of institution in which disabled children live in public care and the number of children

residing there

Children's homes under the Ministry of Public

Health

Residential homes under the Ministry of Labour and Social Protection

Residential schools under the Ministry of Education

Year

Number of institutions

Number of children

Number of institutions

Number of children

Number of institutions

Number of children

1989 … 463 2 294 14 3,900 1990 … 439 2 233 14 3,877 1991 4 439 2 258 14 3,612 1992 4 335 2 232 13 3,101 1993 4 287 2 … 12 2,392 1994 4 232 2 … 12 2,126 1995 4 197 2 … 10 1,339 1996 4 162 2 153 … 1,400 1997 4 145 2 151 15 2,000 1998 5 316 2 150 13 2,246 1999 5 344 3 126 12 1,441 2000 5 372 3 106 10 1,337 2001 5 355 3 115 11 1,526 2002 … … 3 151 … …