Ayana is part of a team based at the Great Ormond Street Institute of Child Health at UCL using the ECHILD database, which links health and education data in England, to better understand how education affects children’s health, and how health affects children’s education. They will be publishing key insights on the Datalab blog over the course of their research.

Children with conditions such as learning disability, autism spectrum disorder (ASD), cerebral palsy, and Down syndrome can be said to have a ‘neurodisability’. They make up 3.8% of the primary school population in England and are a key research focus as they have complex health needs and are likely to struggle in school.

Unfortunately, the educational outcomes of these children are understudied. There is little evidence on the collective outcomes of children with neurodisability or their progression in attainment throughout primary school.

We are currently focused on investigating the progression of educational outcomes across primary school for children with and without neurodisability in England to see if differences between them narrow or widen with time. However, the results make it clear that we cannot compare the differences in attainment across time without considering who is sitting these exams.

Data

We use the Education and Child Health Data from Linked Data (ECHILD) database, which links educational and health records across England.

We track five cohorts of primary school children who have reached the end of Year 6 between 2014/15 and 2018/19. We track them from the Spring census of Reception (i.e. from 2008/9 to 2012/13). These children were born in NHS hospitals between 1st September 2003 and 31st August 2008.

We then observe pupils’ outcomes at the end of reception (Early Years Foundation Stage Profile; EYFSP), the end of Year 2 (Key Stage 1), and at the end of Year 6 (Key Stage 2). We also look at the number of children with and without neurodisability who appear in the school census during the term of assessment, but do not sit the exams.

 Method

We compared the proportion of children with and without neurodisability who did not achieve the national expected level in English and Maths assessments for EYFSP, Key Stage 1, and Key Stage 2. We also compared the proportion of children who did not sit each exam.

In the early years of primary school, less than 4% of children with neurodisability did not sit exams. However, by Year 6, nearly a third of these children did not sit exams despite being in school.

So, while children with neurodisability generally participate in school assessments alongside their peers during EYFSP and Key Stage 1, the transition to Key Stage 2 results in a substantial proportion of children with neurodisability not participating.

When we consider the children who do not sit the exam with the children who do not achieve the expected levels, we see that the differences in attainment outcomes increase over time.

Describing comparisons of attainment that are restricted to those who take the test could be misleading. To check the robustness of the finding, we should count all children in school in the denominator, including those who did not sit the test. This is especially important when comparing groups who are likely to be excluded from testing because of learning difficulties, behaviour problems or frequent absence.

The substantial increase in the proportion of children who do not sit these exams from Year 2 to Year 6 highlights a critical period where exams may become too challenging, or adequate support is lacking, causing many children with neurodisability to be excluded from assessments. SEN provision should focus on this stage of primary school to ensure these children receive the necessary support to participate fully.

A full description of our ongoing study can be found here.