In the following interview, B.Yanjmaa, an education specialist at the Center for Health, Education and Social Protection of Children with Disabilities under the Ministry of Family and Human Development, delved into the importance of early assessment, individualized support and collaboration among healthcare professionals, educators and families to meet the needs of children with disabilities. B.Yanjmaa also highlighted ongoing efforts to make education more inclusive and accessible for these children.

What is the primary role of the Center for Health, Education, and Social Protection of Children with Disabilities, and how many branch commissions operate in Mongolia?

There are 30 branch commissions operating across 21 provinces and nine districts in the country. Each commission is made up of seven non-permanent members. Their main role is to identify the needs of children with special needs, assess whether they require permanent care and connect them with relevant health, education and social security services. Additionally, the commissions provide comprehensive development support to ensure the well-being and progress of these children.

How many children with disabilities are there in our country, and how many of them are in permanent care? Additionally, is there adequate access to kindergartens and schools for these children?

According to the latest data, there are 14,609 children with disabilities nationwide, of which 13,077 are in permanent care. However, many children with disabilities, depending on the type and severity, are unable to participate regularly in educational services, even after reaching the appropriate age for kindergarten or school. For instance, around 800 children are unable to attend kindergarten, and 1,270 cannot attend general education schools.

Children with disabilities require health care and services from birth, with rehabilitation being particularly crucial for those with developmental delays. In 2021, the ministers of labor and social protection, education, science and health jointly approved the Methodology for Providing Comprehensive Development Support. This methodology emphasizes early diagnosis of developmental delays, recommending scheduled examinations at nine, 18, and 36 months of age. Early detection, supported by observations from parents, can prevent complications and enable early intervention. If a child is diagnosed with developmental delays, timely rehabilitation services - such as speech, language, movement, or occupational therapy - should be initiated to support their development.

What initiatives are being carried out to protect the rights of children with disabilities in observance of the International Day for the Protection of the Rights of Persons with Disabilities?

We are actively working on policy changes to improve the accessibility of health, education and social protection services for children with disabilities, including those with special needs and severe disabilities. One of the key initiatives is the revision of the regulations governing the Center for Health, Education and Social Protection for Children with Disabilities. Additionally, the methodology jointly approved by the related ministries will be updated. A working group has also been established to revise the list of diseases and injuries that define children in need of permanent care. Currently, some children in need of permanent care are unable to access services because their diagnoses are not included in the list, while some children with mild disabilities are included. By refining and clarifying this list, we aim to ensure that services are more effectively targeted to the children who need them most.

Moreover, in 2024, a support center system was introduced to assist children who require permanent care and cannot attend regular classroom education. These centers aim to provide comprehensive development services and support education for these children. We plan to regularize these services starting next year. The cost of this service is funded by the government budget and implemented through partnerships with both government and non-government organizations on a contractual basis. Overall, the establishment of support centers is seen as a vital step in ensuring that children, regardless of their challenges, are not excluded from essential education and social protection services.

The regulations of the Center for Health, Education and Social Protection of Children with Disabilities, initially approved in 2016, were revised by the government in 2021. What key changes were made during this revision?

The 2021 rules are currently being revised and developed in more detail. The draft is still under review and has not yet been approved. These revisions aim to further refine the existing guidelines to enhance the accessibility and effectiveness of health, education, and social protection services for children with disabilities, including those with special needs and severe disabilities.

What types of disabilities are considered to require constant care, and which types are most prevalent among children with disabilities?

According to the Law on Social Welfare, children who are unable to perform daily activities independently, require assistance to live autonomously, or have severe physical or mental disabilities are classified as needing constant care. The list of diseases and injuries that define citizens in need of permanent care includes 134 types of conditions across 20 diagnostic groups, based on international disease codes and criteria.

Among children with disabilities, the most common diagnoses include cerebral palsy and paralysis. Additionally, there are 700 children with visual impairments, 894 with hearing and speech disabilities, 977 with motor injuries and disabilities, 1,395 with mental health issues, 2,395 with autism spectrum disorders, 663 with Down syndrome, and 1,140 children with other conditions such as those resulting from falls or accidents. The remaining children have various surgical, internal, combined, or other diagnoses.

Recently, there has been considerable discussion about autism spectrum disorders, with many complex issues surrounding the topic. For example, while doctors often classify autism as a condition that cannot be cured, challenges arise when children who show signs of improvement - such as using diapers less or starting to speak - are removed from welfare services, with the assumption that they are now “healthy”. However, this perspective overlooks the fact that children with autism often still require continuous care and support. Can you elaborate on this?

Children who are unable to perform daily activities such as eating, dressing and toileting independently are placed in permanent care. This means they require continuous assistance for basic tasks. The number of children diagnosed with autism spectrum disorders (ASD) is increasing, but it’s important to note that autism varies significantly in its manifestation. It can present in many forms, ranging from mild to severe, with different behaviors, actions and symptoms exhibited by each child. Not all children with autism fall into the same category, and each case must be assessed individually.

When a child is identified as needing permanent care for a certain period, a decision is made based on their specific needs. During this time, efforts are made to connect the child to services that support their ability to engage in daily life activities. If the commission determines that a child no longer requires permanent care, it indicates an improvement in their condition. The goals of inclusive services and comprehensive support for children with disabilities, particularly those requiring permanent care, differ. It is crucial that the services provided are tailored to the unique needs and characteristics of each child to ensure the best possible outcomes.

Are autism spectrum disorders diagnosed at institutions other than the National Center for Mental Health?

Autism in children is diagnosed by four key agencies: the National Center for Mental Health, the Center for Rehabilitation and Development of Children with Disabilities, the Mongolian Institute for Autism Research and the Academy of Special Children. The decision regarding whether a child has a developmental disability, requires permanent care, or is eligible for social welfare services is not made by a single individual. Instead, the Center for Health, Education and Social Protection of Children with Disabilities serves as a central body that reviews and verifies the diagnoses made by specialists at the National Center for Maternal and Child Health, and District General Hospitals. This center plays a crucial role in mediating and connecting children to the necessary services based on the approved procedures, ensuring that they receive appropriate care and support according to their specific needs.

There is criticism that welfare benefits have increased and do not effectively reach the target group, with some people who do not need it benefiting from the support. Can the center work independently in addressing these concerns? Additionally, do citizens submit complaints regarding this issue?

Citizens have raised concerns regarding the list of conditions used to determine eligibility for permanent care and social welfare services. Some parents have expressed frustration, stating that their child’s condition is not included on the list, while others have pointed out that the provision extending eligibility for permanent care and welfare pensions until the age of 16 may not be sufficient for certain cases. Specifically, there is a demand to review cases every three years in center meetings, which would allow for a more individualized approach.

On one hand, extending eligibility until the age of 16 is intended to be in the best interest of the child, providing continued support. However, this policy has its challenges. In some instances, there are cases of neglect or abuse, where parents may collect welfare payments but fail to provide adequate care for their children. Conversely, there are also parents who actively seek rehabilitation services and take excellent care of their children. Ultimately, the Center for Health, Education and Social Protection of Children with Disabilities is required to operate within the framework of the law and the established list of diseases and conditions. The center’s decisions are made based on these criteria, aiming to ensure fairness while balancing the needs of both children and families.

How does the center reach children living in rural areas, remote soums and villages, especially considering that some individuals with disabilities are unable to access welfare services?  

Branch commissions hold their meetings both electronically and remotely, allowing for greater flexibility and accessibility. In particular, they make efforts to reach remote villages and communities by traveling to these areas to conduct meetings in person. This approach ensures that children and families in rural and underserved areas can also benefit from the services and support provided by the commissions, fostering more inclusive decision-making and ensuring that all children, regardless of location, have access to the necessary assessments and services.

When assessing children with disabilities, is only their physical health considered or how can this be improved to better address their educational needs and abilities?

We are working to gradually introduce the International Classification of Functioning to improve the assessment of children with disabilities. This approach will help evaluate not only a child’s health but also other key aspects of their development, providing a more comprehensive understanding. Based on these assessments, individualized plans will be developed to better address the child’s specific needs. While health remains a central concern, as it is the primary issue for children with disabilities, the determination of health status will still be made by specialized doctors.

Our center differs from the adult commission in that it includes professionals from health, education and child protection sectors. While the adult commission focuses on determining the percentage of disability, our commission makes decisions about whether a child requires an individualized education plan, which type of educational services they should receive, and whether they should attend a special or regular school. To strengthen the capacity of center members, we are working on training and empowerment initiatives. For example, within the framework of the Japan Children’s Fund’s “Supporting the Comprehensive Development of Early Childhood through Equal Access to Services” Project, the capacity of branch commission members is being enhanced. This project, implemented in Bayanzurkh, Songinokhairkhan, Chingeltei districts, as well as in Bayankhongor and Selenge provinces, also focuses on raising awareness and providing information to parents and educational staff about early detection of disabilities.

As part of this effort, there are plans to develop a manual with a methodology for early detection of disabilities in children, and to improve policy documents related to disability services. Additionally, both the Law on Social Welfare and the Law on the Rights of Persons with Disabilities are currently under revision. One of our key proposals is to extend the age range for determining the need for permanent care for children with disabilities from zero to 16 years to zero to eight years, ensuring more comprehensive support for children as they grow.