DfE to collect data on children with Down syndrome

Schools will be required to report how many children with Down syndrome they educate as part of a government commitment to improve opportunities.

Sir Liam Fox, Conservative MP, previously urged ministers to add it as a separate category to the school census.

There are currently 13 categories for SEND on the census, such as “moderate” or “severe” learning difficulties, but there isn’t one for Down syndrome specifically.

From January 2025, schools will be able to select the condition from the list. 

Fox’s Down syndrome private members’ bill became law in 2022. He said it “makes sense to have specific data with which to interpret the success of its implementation.”

He told MPs in March there was currently “no Down syndrome specific school data available, including numbers, location or educational settings.

“Down syndrome is not a subset of other conditions or of learning disabilities, although on a Venn diagram there will be a huge overlap; it is a specific condition and we must regard it as such.”

The Department for Education announced the change today (Friday) as part of its commitment “to improving the life outcomes and opportunities for people with Down syndrome, to identify good practice and shape long term services.”

Children’s minister David Johnston said the move will “shape future services.”

But Carol Boys, chief executive of Down’s Syndrome Association, said while they welcome greater data collection, “it is the long-term, systematic problems identified within the SEND system that will continue to present the most significant barriers to their success.”