Taking action to improve the collection of statistics about disabled children in Scotland
In the past six months, three separate research reports have each voiced the need to collect more accurate statistical data about disabled children to better understand their needs. In May, our CELCIS report – Are disabled children visible in Scotland’s children’s statistics? – explored the different ways in which disabled children are defined and recorded in Scotland’s statistical collections, with an apparent under-recording of disability identified among children who are in need of care and protection. In August, the Care Inspectorate’s thematic review – Disabled children and young people’s experiences of social work services – found that there isn’t reliable data nor a shared definition of disability for children and young people who received support from social workers to inform future planning for services and support. And, most recently, in October, the Coram Voice report – Disability, Disparity, and Demand – found that the official recorded information about disability among young people leaving care in England is much lower than what young people share about their disability or long-term health condition via Coram Voice’s Bright Spots surveys.
These three reports, all of which primarily focused on the collection of disability information within children’s social work data, point towards a growing dissatisfaction with the quality, reliability and accuracy of disability data being collected. Differences in how disability is defined across statistical collections, as well as practitioners not feeling fully confident when completing disability data questions, are leading to inconsistencies in the data. This in turn impacts on the ability for services to plan, fund and provide the support that disabled children and young people need.
Increasing need
It is clear from the aforementioned reports that more accurate data is needed to fully understand the individual and collective needs of disabled children. This is even more important at a time when disability and additional support needs among children appears to be rising. The percentage of Scotland’s children aged 0-5 with one or more developmental concerns increased by almost a third in the last five years, and the percentage of Scotland’s school pupils with additional support needs increased by over a quarter. Perhaps most stark is the latest 2022 Scotland Census data where disability among 0–15-year-olds increased from 5% in 2011 to 8% in 2022.
Understanding and responding to the support needs of Scotland’s children is particularly important for children’s care and protection services. Research shows that disabled children are three to four times more likely to experience harm and abuse than their non-disabled peers. Yet, this increased risk is not reflected in Scotland’s child protection and ‘looked after’ children statistical collections. Without more accurate information, we can’t know whether services could be missing the harm and abuse of some disabled children, or whether it is identified and responded to but without accurate recording.
These are fundamental issues, yet to date the collection of accurate data on disabled children data has often been seen as ‘too hard’. I fully acknowledge that it is a complex area for data collection, but I also believe that Scotland can and should do better.
Taking action
It is in this context that at CELCIS we have secured funding from the Economic and Social Research Council (ESRC) to carry out a short-life research project aimed at producing a revised, enhanced set of disability questions that enable practitioners to more accurately and confidently record a child’s disability. The project started earlier this summer and involves working with six Scottish Child Interview Model (SCIM) partnerships to co-develop and test new data questions that record the physical or mental health conditions or illnesses that have a substantial, long-term adverse effect on the child’s ability to do day-to-day activities. Already the contribution of these partnerships has been invaluable as their practice insights and experience have helped to ensure the wording of the test questions is clear and non-stigmatising.
The project also involves working with key national stakeholders, including the Scottish Government, COSLA, Social Work Scotland and the Health and Social Care Alliance Scotland. In their role as critical friends, they are helping us to ‘future proof’ the project’s work by considering whether the questions and the resulting data are consistent with the Equality Act 2010, meaningful to different stakeholders, and have the potential to be adopted within other children’s statistical collections.
Looking ahead
There is a momentum behind the need to improve this disability data and the energy of the project’s six SCIM partnerships already reflects local commitment to take action. Our hope is that this project’s development and testing can provide better disability data about children involved and can offer a ‘proof of concept’ set of questions that could be used in other data collections. In time, the improved data and understanding generated can then influence the support, services and funding available for disabled children and their families. We will share the findings in early 2025.
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