UNICEF support to the
De-Institutionalisation Reform in the Republic of Azerbaijan
Table of contents
Situation analysis
Rationale
Five key steps toward the de-institutionalisation (d-I)
I. Awareness raising
II. Support to the families: social services and case managers
III. Support to families: social allowances
IV. Development of alternative community based care services
V. School inclusion of children with special needs
The de-institutionalisation reform in Azerbaijan
UNICEF support to the de-institutionalisation reform: plan for 2005
Objectives and actions
1. Support to the finalisation and approval of the master plan of action
2. Coordination with the European Commission for the definition of the standards of targeted social assistance
3. Promotion of an awareness raising campaign at national level
4. Training of social services units on case management and networking methodology
5. Support to pilot community based services: day care centres and drop in centres, informal network of foster families
6. Support to the creation of a documentation centre on de-institutionalisation
7. Support to pilot initiatives of school inclusion of children with special needs
Log frame: UNICEF Deinstitutionalisation plan 2005
Situation analysis
Public institutes are at present the most common form of assistance for children with special needs[1] in Azerbaijan, in continuity with the system set up during the Soviet period.
Around 15,000 children are hosted in 66 institutions in Azerbaijan, including baby homes and orphanages, sanatoriums, boarding schools, institutes for children with disabilities and behavioural problems.[2]
For a long time, during the Soviet regime, institutions have been considered the best public care solution, based on the idea that the State was the main responsible of the organisation of social life, could readily replace the family providing collectivist rather than individualized care, and that all those who for different reason couldn’t fit with the rules of society should have been isolated from the others.
Even though the lack of detailed information hinders the analysis of the main causes of institutionalisation, it is quite clear that the majority of children at present in institutions in Azerbaijan belong to the category of the so-called “social orphans”, i.e. children who are unable to remain with their own parents in the short or longer term because of abandonment, parental illness or imprisonment, harmful or neglectful parenting. The term also includes children with disabilities placed in state care by their parents.
The poor economic conditions of a large number of families is frequently quoted as the main reason of institutionalisation: in a country where nearly half of the population lives below the poverty line, parents often send children to an institute in the belief that this is the safest way to ensure them daily meals, warm clothing, health assistance and education.
However, the progressive improvement of the economic situation of the country in the last years has not been reflected into the decrease in the number of children sent to institutions: on the contrary, the trend of admissions is growing, in particular in boarding schools.
The data might suggest that the reasons of institutionalisation are wider and more complex than the economic factor: children in institutions are the final victims of a crisis situation, whenparents cannot find the necessary coping skills to solve autonomously the family’s problems (either related to special needs of the child, or to social-psychological-behavioural problems of the parents). This appears to be particularly true in countries, as Azerbaijan, where the transition period following the Soviet era is still ongoing, and the collapse of the welfare state has denied to the majority of families the access to services and commodities previously given as granted.
Whatever might be the primary cause of crisis, the incapability of relatives to provide children with the appropriate care, leading to their institutionalisation, is co-determined by three main factors, which involve the role of public services:
- the first factor is the absence of social workers providing support to families in difficulty and helping to identify the best solution for children; without a unique referral figure, acting in the best interest of the child, the weak parental care becomes easily institutionalisation, and institutionalisation is almost always doomed to be a long lasting experience, frequently never ending for children with disability or challenging behaviours.
Easy to get in, difficult to get out
The procedures to admit or dismiss a child from institutes are at present quite confused, due to the fact that several authorities are involved without coordination, and that the procedures established during Soviet time, not implemented any more, have not been replacedwith new ones.
As reported by directors of institutions, the system is regulated by the following practices:
Admissions in baby homes and orphanages are regulated by the Executive Committee (local administrative power appointed by the Presidential Apparatus), and executed by the Police (sometimes taking directly the initiative). Such procedures are not strictly regulated, and cases have been reported of direct interaction between parents/relatives and the institutes.
After admission the director becomes the legal tutor of children, but his/her responsibilities are not clearly defined (to the extent that s/he can decide about revealing or not the identity of biological parents to a child)
The volunteer and formal renounce of biological parents to their authority/rights on the child is a pre-condition for the eligibility to adoption. The right of a child to grow up a family depends on the good will of the same parents who abandoned him/her: without such document children remain in institution till their majority age.[3]
Since parents/relatives maintain their authority on children even in case of manifested ill-treatment, the possible interference of biological relatives with adoptive families is considered the mainreason of the small number of inter-country adoptions.
In case of eligibility to adoption, the director of the institute asks the opinion of child neurologist, which is ratified by the city health department, and submitted to the Commissions on Guardianship and Adoption of the Executive Committee(local education authority) and to the same commission based in the Ministry of Education. The same commissions identify potential adoptive families. Case matching is reportedly done by the Ministry of Education (but another source admitted that adoptions happen through direct selection of the child by the future parents). The Commission for International Adoption is under the responsibility of the Cabinet of Ministers.
Tribunals reportedly ratify the decisions, but have no direct authority in protecting the children’s rights. During the whole process wide margin of discretionality is left to all the professional figures involved, whose responsibility are not strictly disciplined by legal measures.
Furthermore, as easily comprehensible, since the destiny of children is tied to the good will of the institutes’ practitioners, large room is left to a range of abuses and violation of human rights, from the psychological violence and denial of access to education, to more severe forms of abuse, exploitation and trafficking. Testimonies of children, collected in several occasions, are the most evident proof of such violations.
The procedures of admission to boarding schools are regulated by the education system, and happen through the direct interaction between parents and the schools.
- the second factor is the perpetration of stigmatizing and excluding mechanisms, which exercise a negative pressure on families, weakening their coping skills: this is particularly true in the case of children with disabilities and chronic diseases, who in Azerbaijan are completely excluded from the education environment, starting from kindergartens
Diagnosis and exclusion
The diagnosis pronounced by doctors, frequently at a too early stage of life (even immediately after birth, as reported by the psycho-neurological baby home where children are sent directly from maternity wards!) and in general never revised, are the starting point of a process of progressive stigmatization and exclusion that frequently ends up in institutionalisation.
The first health assistance to new-born children is provided by ‘area’ doctors; they send selected cases to polyclinics, where neurological units are located, for further diagnosis and cure in case of disabilities. Some cases are sent directly from maternity wards, and in other cases parents contact directly the units in the polyclinic. Children form villages are generally visited at their 3rd-4th year of life.
Neurologists are in charge of the diagnosis and the definition of possible therapy, but don’t follow the evolution of the disease/disability directly: after the visit of the specialist children are sent back to their area doctors. Reportedly doctors of different services are not in regular contact, and there is no cooperation among different services for the definition of individual plans.
Rehabilitation therapies for children with disabilities are provided only in one centre, located in Baku: the units previously existing in other cities – located in the hospitals - have been closed.
Once reached the school age, children with disabilities or chronic diseases are examined by a medical-psycho pedagogical commission, appointed by the Ministry of Education, called to define the educational plan for every child. At present, for such children the inclusion in mainstream schools is not foreseen: primary and secondary education is provided at home, or within schools and boarding schools for children with physical or mild learning disabilities (which implies that children with severe learning disabilities are denied access to any education service).
Mainly composed by doctors, the commission bases its decision on a list of disabilities/diseases for which it is suggested the home education: the list includes diseases such as asthma, anaemia, hepatitis, rheumatoid arthritis, diabetes, skin diseases, thalassemia, AIDS and HIV.
Schools for children with disabilities are located in few districts, and provide boarding services; children are obliged to leave families and communities to attend school, and the separation becomes definitive in some cases. In addition to this, the system is not in the condition of providing vocational training to adolescents with disabilities, hindering their inclusion in the work market
- the third factor is represented by the almost total absence of community based alternative care services for children with special needs, which would ensure their basic right to leave in a family-like environment. Such services are foster families and group homes for children deprived of parental care, day care services for children with disabilities and drop in centres for street children or children with behavioural problems. The law regulating the institution of foster families has been drafted but never revised by the Parliament. As far as day care centres are concerned, seldom, positive experiences born from spontaneous initiatives are located in few areas of the country; such centres are not recognized as part of the system of public care services, and survive thanks to private donations.
Rationale
Born within a model of society tending to divide individuals according to their “productive” capacity (not only in the Soviet Union), institutions are conceived as closed environments where children (persons) for any reason considered “different” are kept out of the universe of “normal people”; by cutting their links with families and the community, institutions determine the “social death” of persons with special needs.
The institutional placement is particularly detrimental for children at a very young age, as demonstrated by the scientific evidence of the “attachment theory”: children need a consistent, caring, nurturing emotional and physical bond with their primary caretaker to reach their full healthy development.[4] Such care cannot be provided in highly medicalized structures, where life is regulated according to standardized rules, and caregivers need to share their time with several children. The defenders of institutions often justify their opinionreminding that children have a shelter, food, and health assistance in institutions; the affective sphere of life, particularly important during the development phases, is hardly taken in consideration. Institutional care stunts the capacity of children to bond and form deep and lasting relationships; it ill-prepares children to take their place in the broader world, and often produces serious delays in cognitive development.[5]
This is particularly true for disabled children, for whom institutional care tends to exacerbate disabilities rather then empowering skills: institutions become part of the problem rather than the solution.[6]
Also from the financial point of view, institutions don’t result to be the most effective model of public care services: the cost of children in institutions is on average higher than the one of children staying at home and having access to community services; children in institutions represent a cost for the society in the long term, because they generally need further assistance after the dismissal from institutions; furthermore, the social inclusion policies enhanced through community based services have a preventive function, and lead in the long run to the sensitive reduction of cases in need of assistance from the State: the more persons with special need are accepted by their society and have access to services like all the others, the less they will need additional assistance.
Last but not least, several reports and life stories collected all over the world underline that the risk of exposition to violence, abuse and injustice both from caregivers and from peers is much higher in institution than elsewhere.
Five key steps toward the de-institutionalisation (d-I)
As a consequence of the growth of attention to children’s rights if the last fifteen years (after the approval of the Convention of The Rights of the Child in 1989), the d-I reform has started in many countries of the CEE-CIS region. Aim of the reform is to provide children with special needs with alternative community-based services, ensuring their right to grow up in a family-like environment, drastically reducing the number of children at present hosted in public institutes and preventing further admissions.
Every country has its specific characteristics, and the features of the reform are very much related to the availability of resources (financial, social, cultural) in each context; however, it is possible to identify key steps of the d-I process, drawing from good practices and lessons learned from several experiences, including those of western European countries, where the d-I process started before.[7]
Such steps rotate around a basic principle: based on the recognition that children have the right to grow up in a family environment, families become the core target of public policies, as a result of shift of emphasis from the danger of their incapacity, to the potential and capacity they have to assume responsibility and ensure the right of children to live within an appropriate setting. An effective acknowledgment of this role, however, means that attention has to be given to maintaining the necessary balance between the functions attributed to them and the provision of social services to support them in performing such functions in everyday life.
This makes it necessary to establish relations between children, families, State and communities based on formal legal mechanisms which recognize a set of mutual rights and obligations in replacement of the protective system on which institutionalisation was based.[8]
I. Awareness raising
The d-I reform can be seen as part of a collective process of cultural transformation towards an ‘inclusive society’: children can be dismissed from institutions when the community is ready to welcome them and adapt to their needs, paying particular attention to their vulnerability. It highlights the assumption of responsibility of the community as a whole, while accepting every member not depending on their abilities or disabilities. It recognizes everyone’s right to grow up in a community environment, and to have access to health, education, leisure and culture without discrimination of any kind.
For this reason, the public opinion plays a very important role in the d-I reform: only whenthe conviction that every child has the basic right to grow up in a family (be it the biological one or another) will be widely shared, it will be possible for alternative care services to root with the contribution the whole community, as a sign of its mature spirit of solidarity.
This is particularly true for children with disabilities, and for all those children that for a reason or another are considered “different”: in a society that was for a long time released from thinking about the problems of children with special needs, hidden and forgotten in institutions (or inside their own houses), it is very important for the collective imaginary to re-consider the idea of accepting those children as lively part of the community.
Actions aimed at raising the awareness of citizens, through communication events and the direct involvement of the protagonists of the campaign contribute to accelerate the process of establishment of the appropriate welcoming climax at community level.