General guidelines
General Guidelines for inclusive education and multidisciplinary care of learners with spina bifida and hydrocephalus is the basic paper of the Multi-IN resource kit. This is the foundation from which all other Multi-IN resources are developed. The paper unites previous international experience, research and good practices in the field of education and care of children with spina bifida and hydrocephalus and case studies from Bulgaria and Slovakiа.
The purpose of the guidelines is to introduce the life of children with diagnosis spina bifida and hydrocephalus and to help important people around them understand the condition – so they can make informed decisions and to provide effective support for the group of children and young people. Spina bifida is a complex of varieties. Many professionals around the world working with the group refer spina bifida to “snowflake condition” – the situation of each of them is so different. No two people are affected by this diagnosis in the same way. There are also many consequences. It is similar to the diagnosis of hydrocephalus – it affects people in different ways.
The guidelines aspire to introduce important points and to highlight prevention of the known ones. Current knowledge makes it possible to prevent many serious and in the past common consequences in the development of children with spina bifida and hydrocephalus. Many people living with the diagnosis are changing the picture of their life with the diagnoses. The focus of the guideline is to underline the rights based multidisciplinary, holistic, family – centered approach.
We are convinced that current knowledge from various fields, awareness of the rights of people with disabilities and opportunities for self-realization of these people are good basis for their fulfilled life. School is one of the most important institutions that every child goes through, it is a key intervention environment with many opportunities for multidisciplinary cooperation. Its uniqueness allows you to capture and support the child and his family from an early age, regardless of whether his or her primary environment perceives this need. Throughout the school we support children and families. In the document we present a proposal for multidisciplinary work in the school, thanks to which not only students and their families, but also teachers and the school management can feel the support.
All of us are so important to be supportive to develop functional abilities, independence, and self – esteem of children with spina bifida and hydrocephalus. It is possible if we believe in them, we know how to support them, we respect their rights, we fulfill their needs and cooperate.
Let’s do it together!