How many disabled children are there in England? This sounds a relatively straightforward question. Service improvements for children with disability are a government priority and require a robust evidence base.
However, recent research suggests we are still some way from being able to estimate figures with confidence. Given this, now seems a good opportunity to identify and drive through some of the changes needed.
The situation is complex. Services for disabled children are provided across several agencies and data collection, where it exists, tends not to be co-ordinated and varies in scope and quality. Problems in defining disability and a lack of reliable national prevalence and trend data intensify the difficulties for policy makers, commissioners and service planners at local and national level.
A new survey of directors of children’s services across England, Disabled Children: numbers, characteristics and local service provision, has identified wide variations in the way childhood disability is recorded. Seventy-six of the 115 authorities that responded said they calculated local prevalence using counts based on single or a combination of different local data sources, while 35 authorities used estimates based on national surveys and other sources (see first chart).
There were also variations in the way disability is defined, both across local authorities and between agencies in the same geographical area (second chart). In practice, it is reasonable that a definition will vary according to the purpose for which it is needed, but the evidence from this survey and from other recent research by the University of Warwick, Can We Count Them? Disabled children and their households, suggests we have neither an agreed consensus on these purpose-specific definitions, nor systems that can collect or report information consistently.
So what next? The joint Department of Health and Department for Children, Schools and Families working group has been influential in looking at improving this type of data. We also need to ensure new guidance, evidence and best local practice is disseminated effectively. This is part of ChiMat’s role, the new national child and maternal health observatory. ChiMat is working with expert users to develop an online needs assessment tool and other commissioning tools that will help local teams improve knowledge of local populations and use new data and evidence more effectively as part of needs assessment, planning and service commissioning.
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