Abstract

This project was commissioned by the Department of Health to survey existing data collections regarding childhood disability across the domains of education, health and social care and to collect definitions of disability from across three domains. A systematic review was conducted which addressed the two aims. The findings were discussed in consultation of findings with key professionals from across the UK and with some contacts in Europe, both electronically and in a professional working focus group.
The review of published academic and grey literature identified vast disparities between the way that data is collected, coded and used across the three domains. The disparities between the definitions of disability used across the domains further prevent the data being drawn together in a cohesive manner that may then be used to facilitate effective planning of services both locally and nationally.
The project did, however, identify one coding system that may potentially offer a solution to these difficulties, the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY, World Health Organisation, 2007). This coding system has demonstrated a capacity to resolve issues with data collections in Europe and has been the subject of policy recommendations presented to the European Parliament on the 16th September 2008. It is proposed that while immediate change is not possible, a staged approach, beginning with a pilot study of the utility of the ICF-CY, should be conducted to test its efficiency in providing effective harmonisation of data collections across the three domains and its applicability in the identification of childhood disability. Alongside this, it is important for the ICF-CY considered by the project group overseeing the implementation of the Child Health, Maternity and CAMHS Care Records.