This specific release was highly anticipated because it contained the very first official census figures tracking Down syndrome as its own primary type of need.’
We’ve called for this as the DS community for a long time!
I’m interested to know who is planning to review the data when it’s released and whether it will provide data sets that researchers and service providers can work with?
I did previously look at the 2024/25 data, and it was clear the data recording was incomplete - ~1,600 pupils with Down syndrome in primary and secondary schools in England - so concluded it was not useful.
Looking at 2025/26 (briefly) they now report ~2,500. A rough estimate says (for 5 to 16 years) would be >7,000 children.
I wonder whether it would be useful to look at this with a view to increasing response rates. I appreciate there may not be any established data to compare it with, but it could still be helpful to report on the settings and age groups where data has, and has not, been submitted. For example, are there proportionally more pupils with Down syndrome recorded in primary than in secondary settings?
I also think it’s important that we tell the story that, although Down syndrome has now been added to the school census, the data currently appears to be incomplete. That means we can’t yet use it for many of the purposes we originally campaigned for. Otherwise, there’s a risk it looks as though we successfully campaigned for its inclusion but then haven’t done anything with the data, when in reality the issue is that the dataset isn’t yet complete enough to support those initiatives.
