We are overjoyed to bring you a momentous update, a triumph achieved through the collective dedication of our National Down Syndrome Policy Group, the All-Party Parliamentary Group on Down Syndrome, and advocates like you. Beginning in January 2025, Down syndrome will officially be recognized as a separate category in the School Census.

What is the School Census?
The School Census is a data collection process conducted three times annually, involving primary schools, secondary schools, special schools, maintained nurseries, academies, and pupil referral units. This process is carried out electronically, and it’s important to note that private schools are not part of this data collection.


Why does this matter?

This achievement holds profound significance for our community in education provision and planning but will extend its reach even further. It also has the potential to enhance the health and well-being of children with Down syndrome.

This development provides a robust foundation for better support and resources for students with Down syndrome within educational settings. The unique learning profile of people with DS is well researched and documented by world leading experts. Many countries now have education guidance, for example DSEi and NDSS recent guideline release.

Importantly, it may also indirectly benefit their health in the following ways:

  1. Informed Healthcare Planning: Accurate data on the number and distribution of students with Down syndrome will contribute to more informed healthcare planning. This can lead to better access to specialized healthcare services, including early interventions and therapies that can positively impact the health of children with DS. Especially those with dual diagnosis, hearing and/or vision issues.
  2. Tailored Health Programs: The availability of precise data will enable the development of tailored health programs. These programs can address the unique health needs of children with Down syndrome, potentially leading to improved health outcomes.
  3. Increased Awareness: The inclusion of Down syndrome in the School Census raises awareness about the specific health challenges faced by these children. It can encourage healthcare providers to prioritize early screening, diagnosis, and intervention of other issues, all of which are crucial for managing potential health issues.
  4. Research Opportunities: Having accurate statistics can also spur research initiatives focused on improving the health and well-being of individuals with Down syndrome. This could lead to advancements in healthcare practices and therapies.

We invite you to join us in spreading this momentous news on social media today.  Show your support by also following @APPGDS and @NDSPolicyGroup on Twitter and Facebook, and use the hashtag #DownSyndromeAct to amplify our message.

We extend our heartfelt gratitude to all the groups, individuals, and professionals who have been steadfast supporters of our cause. Your ongoing support continues to drive our mission forward, benefiting not only education but also the health of children with Down syndrome.

Thank you for being an integral part of our journey.