Data Insight: Special educational needs provision in primary schools for children with major congenital anomalies

This Data Insight draws on the Education and Child Health Insights from Linked Data – England (ECHILD) database. It describes the prevalence of recorded special educational needs (SEN) provision in primary school for children born with a range of abnormalities in England. It also examines the change in proportion of children with recorded special educational needs provision before and after changes to the special educational needs system in England in 2014.

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Children with major congenital anomalies (for example, spina bifida or Down syndrome) tend to have complex health problems, meaning that they are likely to require additional supportfrom health and education services as they grow up. However, there is a lack of information about the number of children with specific major congenital anomalies who receive supportin England, particularly in the education system.

What we found 

  • Children with a major congenital anomaly were more likely to have SEN provision
  • The proportion of children with SEN provision varied by type of major congenital anomaly
  • The proportion of children with SEN provision decreased after 2014. 

Why it matters

Families, service providers and clinicians want information about whether children with a major congenital anomaly are likely to require SEN provision, in order to plan for schooling. This Data Insight shows that the likelihood of SEN provision in primary school varies by type of major congenital anomaly identified in hospital records.

This work illustrates how large administrative datasets can be harnessed to provide such information. The approach in this study could be developed to use de-identified ECHILD data routinely for planning and monitoring of SEN provision. For example, the need for early specialised support could be identified in hospital episode statistics by the end of infancy. This information could then be shared with each local authority. Specialist paediatric services could use such information to prepare parents for the type of support likely to be needed.

Importantly, this work also shows that early SEN provision (in year 1, by age six) has reduced over time, particularly for children at the lower level of support.

ECHILD is one of several datasets in scope for a funding opportunity for ADR UK Research Fellowships. Find out more and submit an expression of interest by 28 March 2024. 

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