New approach in disability assessment od children with disabilities and their families
New approach places the child in center of all interventions
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OpEd by Dr Rownak Khan, UNICEF Representative in Bosnia and Herzegovina
As anywhere in the world, here in Bosnia and Herzegovina (BiH), the children with disability are the most vulnerable and marginalised group. They are often not only excluded from the basic social services such as health and education, but also perceived as burden to the families and society. Many families find it difficult to respond to these children’s needs due to lack of support system, while the stigma and taboos exacerbate this situation. As the result, many children with disability end up being institutionalized or kept at home, missing a single opportunity to develop their potential and abilities.
The International Classification of Functioning, Disability and Health (ICF) is the framework for classification of functioning, disability and health at both individual and population levels. As the functioning and disability of an individual occurs in a context, ICF also includes a list of environmental factors
Being the leading advocate for the rights of every child to thrive, learn, participate, and be protected, UNICEF BiH has been working with the authorities and relevant partners to address the needs of children with disability through a comprehensive and multisectoral prism, starting from early detection of disabilities, through early intervention, inclusive education, health, and social protection. The practice has shown the absolute necessity to introduce the ICF rather than existing and widely applied medical model of classification of disability.
The regulation on classification that was in force in the most administrative units in BiH, is based on a predominantly medical approach, which categorizes children in relation to the degree and type of disability, and completely leaves out the component of the assessment of the child's functioning, as well as the assessment of environmental factors that affect the child's development.
As one of the mothers involved into our interventions said: “The earlier way of the assessment was breaking my heart. How can one assess my child in ten minutes and conclude anything?”
The main change in the reform of the child assessment system, is to shift focus from the current practice of detecting disabilities and establishing diagnoses to empowering the child and family, identifying the child’s abilities, needs and interests, and adapting the environment to those.
In 2019, UNICEF BiH conducted an analysis of legislation and the practices used for assessment of child disability in 10 cantons of Federation of BiH (FBiH) , as a basis for development of a roadmap for recommendation, in close consultation with Health, Education and Social services sectors. The main purpose of this map was to adjust assessment of children with disability in line with ICF in all 10 cantons in FBiH – out of which, two cantons – Herzegovina Neretva (HNK) and Zenica Doboj have been identified as two forerunner Cantons for preparations, trainings, and implementation of ICF. Since the mid of 2022, Una-Sana Canton also joined this initiative.
So far, substantial progress has been made in HNK as the designated group of experts succeed to amend the by-law and developed a rulebook and guidebooks to train/ orient professionals from health, education, and social protection sectors. The canton is pioneering the effort in the country and in the region. This is a milestone and a positive development towards a comprehensive approach in supporting children with disability and their families. The approach is successful as all parties involved play their respective roles, starting from developing an individual targeted plan for the child and availability of resource and services to carry out the plan.
It is extremely important that this new assessment system is simultaneously followed by the development of services as the assessment is only the first step of the process. Therefore, UNICEF continues to provide support to the sectors of education, social and child protection and health, through the further development of inclusive education, early childhood development and a range of social services in the domain of support for children and families. In addition, the new disability assessment and referral process will be facilitated and supported through the development of innovative digital solutions, a web-based tracking system that will be accessible to service providers which are included in the provision of support to a child and family. The new system will allow exchanges of important information in a real time, thus enabling timely and coordinated response, a lack of which has been recognized as one of the most problematic gaps in previous system.
The reports from the field show that the idea has been very well received even though is not always easy to welcome the novelty. However, the impressions from the experts, professionals and families, prove that if something is new and unfamiliar, it doesn’t mean it’s not good and it will fail.
While the mother, featured at the beginning of this story, already feels the difference in systemic approach to her son, and now is looking forward to enrollment into the school, of which she hesitated only a year ago, we at UNICEF will continue supporting the reform and will advocate with governments for the critical investments into: generating data on children with disability through regular information management system and through population-based surveys, advocacy and awareness raising to destigmatize disability, transformation of the institutions for children with disability into support services and benefits to strengthen the families, allocation of budget to the administrative units for social services for children, and into the enabling infrastructure and access.
The process has started, and we all have the role to play.
The formula is simple; every child has the functionality. Once the functionality is defined, we need to design a set of activities for each actor in the environment of a child. The result is that we enable a child to develop their full potential, instead of focusing on disability.