“I Will Not Die Until I Take Care of Him”
The Issue of Improving the Status of Children with Developmental Disabilities in Serbia
“I will not die until I take care of him,” says Jelena Petković, a 46-year-old education worker from Niš and the mother of a boy with autism.
According to the Register of Children with Developmental Disabilities, as of March 31, 2024, 3,418 children up to the age of 18 have been recorded. Of the total number registered, 1,666 children (48.7%) have diagnoses from the autism spectrum disorder. The total number of children with developmental disabilities in the Republic of Serbia is not precisely known. According to data published by BIRN in 2022, approximately 350,000 people with disabilities were living in Serbia.
According to a study published by UNICEF in Serbia, more than 90% of citizens believe that children with developmental disabilities and disabilities can succeed in life if they receive adequate support. The existence of a social consensus on such a serious and emotionally charged socio-political issue indicates society’s willingness and support for proposals of practical policies that the Republic of Serbia can undertake to improve the status of children with developmental disabilities.
Nevertheless, what is commonly referred to as a social problem most often falls on the shoulders of everyday family life, and above all, on the parents of children with developmental disabilities. UNICEF Serbia further reported in 2019 that as many as 45% of parents stated that they or their children had encountered some form of insult, belittlement, or harassment due to the child’s developmental disability. According to the same source, such discrimination came from unknown individuals in 28% of cases, from peers attending the same school in 17% of cases, and from school employees in 7% of cases.
A particularly disturbing economic component of this socio-political issue is the fact that 60.1% of families state that their income is insufficient to cover the additional costs related to caring for a child with developmental disabilities.
What most people consider a problem at the end of the day would be a blessing for parents of children with developmental disabilities. Life will continue to unfold differently for each of us, offering new opportunities and challenges, and each of us will face them in our own way. However, families and parents of children with developmental disabilities will wake up and begin and end their day with a constant challenge: to provide their children with the most beautiful possible childhood, future, and life, despite insufficient financial resources, despite the lack of systematic support, and despite potential and documented discrimination. Despite everything.
Assomeone whose family member is a healthcare professional working with children with developmental disabilities, often with autistic children,I once had the opportunity, at the end of one such session, to meet the parents of one of those childrenby chance and to see thatlittle boy. The intertwining of fear, love, and sadnessawakened in me a unique moment of empathy. I felt sadnessbecause the world we live in has not developedsufficient mechanisms for the inclusion of children—and adults—with developmental disabilities. Watching the parents with their child and feelingthe warmth of parental love andtenderness in their voices, I was overcomeby fear, with a firm lump in my throat,as I momentarily questioned my understanding of courage. How difficult is it truly, and how muchstrength does it take, to face such a challengealongside one’s loved ones? It is clear that this perception of courage emergeswhen one becomesa parent, when, at any moment, the boundaries betweenthe possible and the impossible can be erased in an instant, solely for the sake of love. As I write sentence after sentence, the tears beggingto escape my eyes compel me to say and write, in the hope that perhaps even one person facing these challenges in any way might hear the following: I love you, and I pray to Godfor peace for you and your loved ones.
Unequivocal empathy within the social consensus regarding adequate support as a prerequisite for the success in life of children with developmental disabilities is not enough. In addition to every individual act of humanity, it is necessary for the Republic of Serbia to utilize state resources and tools, as well as the potential of bilateral and multilateral cooperation, in order to fully justify this social consensus.
International cooperation, through the provision of recognized socio-political norms via mutual assistance, state agreements, and the exchange of experiences, can be one of the most effective approaches in defining clear proposals for practical policies aimed at improving the status of children with developmental disabilities in the Republic of Serbia.
D. Lakićević states that the content of social policy through international cooperation arises from collaboration between fully sovereign political entities. However, the 21st century— shaped by processes of integration and globalization and highly sensitive to sometimes short-lived yet fundamentally connected geopolitical moments—demands an important role of the state in the process of improving the status of children with developmental disabilities on its territory, as well as state support for professional governmental and non-governmental organizations, and for international and humanitarian organizations. Lakićević particularly emphasizes the importance of social development, which should be planned to provide constant and, above all, always accessible, institutionalized, and effective support, along with a method of implementing such a plan that creates predictable and stable outcomes.
One of the most recent examples of such action within a broader socio-political plan aimed at improving the status of children with developmental disabilities is the beginning of construction of a new school building in the yard of the Sveti Sava Primary School in Prokuplje in January of this year, intended for the education of children with developmental disabilities. The project is supported by the United States European Command, which has previously participated in and supported the improvement of social cohesion and inclusion, with funding exceeding one million dollars. “This is an act of dedication to children, families, teachers, and the future of this community. It reflects shared values—dignity, compassion, and giving every child a chance,” said Aleksandar Titolo, Chargé d’Affaires of the U.S. Embassy.
The European Union, together with the United Nations, are the most significant partners of the Republic of Serbia in improving the status of children with developmental disabilities. A program such as EU PRO Plus has supported projects in 99 local self-government units across the Republic of Serbia with nearly ten million euros, focusing on improving social infrastructure and social cohesion.
Practical action should encompass areas requiring urgent intervention, especially in communities where systematic support is insufficient and where it can be further improved, as well as actions aimed at long-term, stable, and consistently available systematic support that will result in children with developmental disabilities leading successful lives.
The construction of specialized centers for children with developmental disabilities across the country where there is need and where they represent the geographically closest point of connection with children and their families, the improvement of developmental counseling services, and the maximization of the crucial role of professional staff within our healthcare system—implemented in cooperation with the aforementioned partners—would result in the Republic of Serbia not only improving the status of children with developmental disabilities within its own borders through applied proposals of practical socio-political and economic policies, but also contributing, through its practical experience, to improving the status of children with developmental disabilities in other countries.
In this way, the Republic of Serbia influences its strategic global, continental, and regional positioning in a strong and forward-looking manner, presenting itself as a stable and active partner within the international community.
