The children of Birmingham with severe intellectual disability who show challenging behaviour

In two large-scale survey studies we generated estimates of the number of children in Birmingham with severe intellectual disability who show challenging behaviours such as self-injury and aggression. In this brief report we detail the results of these surveys in order to facilitate strategic planning of service provision now and in the future. Based on teacher reports we estimate that approximately 700 children in Birmingham with a severe intellectual disability aged between 4 and 18 show at least one form of challenging behaviour and approximately 220 show at least one form of challenging behaviour at a level that would be considered clinically severe. For a younger age group, approximately 320 children with severe intellectual disability in Birmingham aged between 2 and 12 are estimated to show at least one form of challenging behaviour and 64 show at least one form of challenging behaviour at a clinically significant level. Parent reports suggest the figures are higher. Based on these reports we estimate that approximately 570 children with severe intellectual disability in Birmingham show at least one form of challenging behaviour at a clinically significant level and 430 parents say they need significant help. Of these parents, only 1-in-3 will have received a relevant clinical contact in the preceding month and parents are more likely to have had contact with a social worker. These data show that there are a large number of children in Birmingham with severe intellectual disability who show severe challenging behaviour and whose parents are struggling to cope. Given increased longevity for those with severe intellectual disability and the persistence of challenging behaviour well into adulthood, there are clear implications for the quality of life these children are likely to experience and the level of service provision that will be needed in the future from social services, health and education. We believe that strategic initiatives from social services, health and education are required to identify those children who are at the highest risk for showing severe and longstanding challenging behaviour and provide effective, early intervention.