A public forum titled “Improving the Status of Children with Developmental Disabilities and Their Parents” was recently held in Bijeljina, organized by the associations “Children of Light” and “A Different World”, which support individuals with autism. This was the fourth public forum on the rights of children with developmental disabilities and, according to participants, perhaps the only space where parents can openly voice what institutions continue to ignore: that the system has abandoned them.

The association “Children of Light” expressed concern over the fact that the entity ministry has long been avoiding addressing the issue of systemic support for parent caregivers.

“Representatives of the Ministry of Health and Social Welfare remained consistent with their previous public statements regarding the status of parent caregivers, namely that they do not intend to amend the current regulations, as they believe the existing legal framework is entirely adequate. Meanwhile, parent caregivers are deeply discouraged and shaken by the lack of support from both society and authorities when it comes to meeting the needs of their children with the most severe forms of disability.”

This case once again highlights how the authorities tend to view formal changes to the law as an act of goodwill, rather than as an institutional obligation toward the most vulnerable.

“I’m the mother of a child who is nearly 40 years old, and I don’t have the right to be recognized as a parent caregiver, which is truly outrageous. I would like to meet the person who wrote that law and ask them - did they decide that our children aren’t allowed to live past 30? What exactly is gained by setting the limit at 30? Things only get harder as the child gets older. Instead of helping us more, they’re making things harder”, said Ika Stevanović, the mother of a child with special needs, with the support of those present.

“The law needs to be completely changed. Children with special needs are completely neglected - no one cares about them, they matter to no one except their parents. And a parent, as a parent, loves their child, watches over them, gives their all, sacrifices everything just to provide what their child needs”, Stevanović added.

The associations “Children of Light” and “A Different World” are part of a broader initiative advocating for systemic support for parents of children with developmental disabilities. After years of the issue being ignored, they have decided - with the support of the PRAGG project - to submit an initiative to the Constitutional Court of Republika Srpska to assess the constitutionality of the existing legal framework.

“We have submitted an initiative to the Constitutional Court of Republika Srpska, requesting a ruling that the provision in the Law which limits eligibility for compensation to children up to the age of 30 is unconstitutional and should therefore be removed from the Law on Child Protection. We are absolutely convinced that the Constitutional Court of Republika Srpska will agree with our well-reasoned position - that setting an age limit on the exercise of a right granted to a citizen of the Republic based on certain personal characteristics cannot be taken away simply because the individual has reached a certain age. Such a restriction is discriminatory and constitutes a violation of fundamental human rights, guaranteed by both the Constitution of Republika Srpska and international conventions that are part of its legal system”, stated the association “Children of Light.”

Associations are actively seeking political support for the amendment of the Child Protection Act. The focus is on meetings with parliamentary groups to secure support for the formal initiation of the legislative initiative.

“We sent a meeting request to all parliamentary groups in the National Assembly to gain the widest possible support. We want to encourage the members of parliament, that is, the parliamentary groups, to propose an amendment to the Child Protection Act. The reactions after the first meeting have been positive and supportive regarding our intentions to amend Article 36a of the Child Protection Act”, the Association states.

In addition to political advocacy, the associations plan concrete steps to ensure that the amendment to the law is thoroughly prepared and well-argued. Therefore, they are collecting relevant field data to demonstrate the actual scope of the problem and the financial framework needed for the proposed changes.

“While holding meetings with parliamentary groups, we will be collecting data from all social work centers and branches of the Child Protection Fund on the number of parent caregivers whose right to compensation has been approved or denied. Our goal is that, when preparing the legislative proposal, in the explanation—which is a necessary part of the amendment proposal - we highlight the financial amount involved, i.e., what the cost to the Republic’s budget will be, or how negligible that amount is compared to what is allocated for other items”, the Association adds.

Parents and activists will not give up. But the question remains: how many more times must they tell the same stories, how many more lives must pass through the silence of the system before someone admits - they have been abandoned?