Case study on parent advocacy for children with autism

Borbála Bányai – Anikó Nagy-Konnát – Zsanett Boros

Abstract

In Hungary, all children are obliged to attend kindergarten from the age of 3, and school attendance is required until the age of 16. The laws in force state that pupils with special educational needs have the right to receive special instruction in accordance with their condition (Act CXC of 2011 on National Public Education, hereinafter referred to as the "Act"). For children with special educational needs, the Expert Committee may recommend a segregated or integrated school (possibly with private student status), which may be run by the state, a church, a non-profit NGO or even a private school operating on a market basis. Both segregated and integrated schools have advantages and disadvantages; the fundamental question is which would be the most ideal for the child in question. The integration of children with autism who have special educational needs into schools and communities is a fundamental human right but finding the ideal school for the children is far from clear in practice. In this study, we present the story of two parents from different cities who, having rejected the recommendation of the Expert Committee for the Assessment of Learning Ability and Rehabilitation, tried to find a suitable educational institution for their children with autism and failing to find one, became involved in volunteer work as advocates. We will describe the means they used, the institutional actors (providers) they had to or tried to cooperate with, the obstacles they encountered and their support network during this process. The aim of this study is also to explore the process of how and why this advocacy behavior changed from informal volunteering to formal (organizational) volunteering. The results show a new type of parental volunteering, which is grassroots and external to the school, but which has had an impact on the functioning of the school and not least on the professional enrolment of the children concerned. Furthermore, it is an important finding that the parents of the children could not have achieved results on their own without the support of a support network (municipalities, parents' associations, NGOs, etc.); yet even extensive support does not necessarily guarantee that the children will be properly educated.

Keywords: children diagnosed with autism spectrum disorder, primary school, parent volunteering, intersectoral cooperation