Collecting disability data from parents

This article describes the development and national trial of a methodology for collecting disability data directly from parents, enabling schools and local authorities to meet their obligations under the Disability Discrimination Act (DDA; 2005) to promote equality of opportunity for all children. It illustrates the complexities around collecting this information and also highlights the dangers of assuming that special educational needs (SENs) equate to disability. The parental survey revealed children with medical and mental health needs, but no SENs, who were unknown to schools. It also revealed children with a recorded SEN whose parents did not consider that they had a disability in line with the DDA definition. It identified a number of children whose disability leads to absences from school, making them vulnerable to underachievement. These findings highlight the importance of having appropriate tools with which to collect these data and developing procedures to support their effective use. We also draw attention to the contextual nature of children's difficulties and the importance of retaining and respecting the place of subjective information. This is central to adopting a definition of disability that hinges on experience or impact.