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Description
Growing up for children with spina bifida and/or hydrocephalus (SBH) is a trial that can predetermine their future life. Their challenged mobility and different appearance leaves them often misunderstood, excluded, excessively looked after and with a predetermined life ahead. Dependency, passivity and isolation through the care of parents and institutions are unwittingly encouraged. Families lack support and measures to prepare children with this rare disease to lead an independent life as adults. Our project empowers adolescents with SBH through training of children and their families and promotes civic engagement through youth advocacy activities supported by mentors and partners, i.e. the Norwegian organization for SBH. 15 children of school age with SBH and their families from across the country will pass 5-day training. They will acquire awareness regarding civil rights and the rights of people with disabilities, learn about examples of self-advocacy in Bulgaria and Norway and master skills for advocacy and support of youth initiatives. The children will also apply the civic engagement tools in practice. They will take part in advocacy initiatives for 14 months divided into 3 teams. The project envisages online sharing of its outcomes in 60 vlogs and 3 videos. The planned training on safe use of the Internet and mentors’ guidance will raise the Internet culture of the children and help easy and safe work online. Finally, we will disseminate the results among the stakeholders at a special event attended by at least 10 civil society organizations supporting children with special needs. The project is an example of self-advocacy by adolescents and will benefit the work of CSOs that will serve as intermediaries in the project. The end users are 48 in total, children with SBH and their families.
Summary of project results
The aim of the Empowered Youth Project was to encourage civic participation and develop advocacy skills among children with spina bifida and hydrocephalus in Bulgaria. The Norwegian Association for Spina Bifida and Hydrocephalus as а partner supported the activities by presenting valuable expertise and supervision.
The Project started with a five-day training focused on advocacy and youth civic engagement for 45 participants: children with spina bifida and hydrocephalus, their parents and siblings. The training gave the children theoretical background and some good examples on advocacy in order to prepare them for the next project activates.
The real advocacy work started right after the training. Twenty children participated in The Project. For 16 months, they worked on their own advocacy campaigns divided into three smaller groups, supported by a team mentor.
Through the Empowered Youth Project the children with spina bifida and hydrocephalus, traditionally considered as a vulnerable group, have stepped out of this role and proved to be able to advocate for various civic causes. The project team believe that this model for support of children with special needs and their families, where the focus is on their abilities and strengths, leads to real empowerment. And this is the most important result of the project.
Summary of bilateral results
The Norwegian Association for Spina Bifida and Hydrocephalus as а partner supported the activities by presenting valuable expertise and supervision.