On the occasion of World Autism Awareness Day, the Coalition of NGOs for Child Protection – KOMF reiterates the ongoing challenges faced by children on the autism spectrum and their parents in realizing their fundamental rights.

Children on the autism spectrum and their families continue to face a lack of quality and accessible services in key sectors, such as healthcare, social protection, and education. The challenges are particularly pronounced in early identification and assessment, as well as in ensuring early intervention services, which are crucial for the development of children with autism.

The financial costs that families must bear to secure the necessary and specialized services for children on the autism spectrum are very high, placing a significant burden on the economic and social well-being of families. In most cases, one of the parents, primarily the mother, is forced to leave work and provide 24-hour care for the child with autism.

Despite the professional capacities and expertise of non-governmental organizations working with children on the autism spectrum, institutional financial support from municipalities and the Government for these organizations remains low and does not cover the needs for providing sustainable services free of charge for children. Consequently, in the absence of a sustainable public system, non-governmental organizations continue to bear the primary responsibility for service provision.

The meaningful inclusion of children on the autism spectrum in the education system continues to be challenging due to the lack of information, adequate support, resources, specialized staff, and professional monitoring. Not all children have teaching assistants in schools or continuous support throughout the learning process.

In addition to their daily challenges, parents also face worsening economic conditions, as they are often forced to pay for teaching assistants for their children themselves. This situation is even more pronounced at the preschool level, where the lack of assistants in kindergartens directly undermines the foundations of early intervention. Parents of children with autism experience high levels of stress due to the daily challenges of caregiving, education, and securing the necessary services for their children. This stress is also linked to the financial burden and the lack of institutional support.

The initiative to draft a law aimed at addressing and providing equal support for all persons with disabilities, based on their needs, including children on the autism spectrum, launched in 2016, marked an important step towards improving legislation in Kosovo. The Draft Law on the Rights, Assessment, Treatment and Recognition of Status, Services and Benefits for Persons with Disabilities aims to establish a modern bio-psycho-social approach.

However, despite continuous advocacy by civil society, the draft law has been delayed for ten years and has still not been adopted. The Government of the Republic of Kosovo should urgently adopt this draft law, in accordance with the needs of children with disabilities.

KOMF emphasizes that every child on the autism spectrum has an equal right to development, education, and well-being, and in order to guarantee this, calls on the responsible institutions to take immediate and sustainable steps to:

• Improve mechanisms for early identification and intervention
• Ensure early services and specialized interventions
• Increase funding for organizations providing services for children with autism
• Increase inclusion in quality and inclusive education by increasing the number of teaching assistants, professional staff, and strengthening the professional capacities of teachers to work with children with autism
• Provide support for parents and families

KOMF recommends that, in addition to supporting parents and families, investments should also be made in educating and raising awareness among them and society as a whole about autism. Furthermore, cultural and sports activities should be established and expanded, thereby contributing to their promotion and active integration into society.

KOMF calls for concrete action from all stakeholders, institutions, professionals, and society as a whole to ensure that children on the autism spectrum have equal opportunities to realize their full potential.