05 Nov 2025

Today on Wednesday 5th November 2025, the Draft Statutory Guidance for the Down Syndrome Act was released. Now it needs to be reviewed by the people whom it will most affect in the Down syndrome community. It is essential that their voices be heard and taken into account.

 

This blog briefly answers a few important initial questions. Over the next few days, we will provide further information, highlighting areas that may be of particular interest or concern.

 

What is the significance of the Draft Statutory Guidance being released?

 

It means we’re much further along the road to actually implementing the Down Syndrome Act and seeing it make a practical difference in the lives of our communities. This step has been paused for years since the Act was passed in 2022, and it gives us great hope to see it gathering momentum again. We now have a draft of guidance that shows how the DHSC is envisaging implementing the Down Syndrome Act: we can discuss it, critique it, strengthen it, and above all contribute your lived experience, knowledge, and expertise to it.

 

What’s the next step?

 

The Department for Health and Social Care (DHSC) is inviting people to take part in the full consultation to widely test the draft statutory guidance ahead of final publication.

The Down Syndrome Research Foundation UK encourages you to take part in this consultation: it’s the last real chance to help shape the way this groundbreaking new law will be enacted.

 

Who can take part in the consultation?

 

The DHSC welcomes responses from:

 

  • people with Down syndrome and their families and/or carers
  • people with other chromosomal conditions, genetic conditions and/or a learning disability who have similar needs and their families and/or carers
  • organisations
  • people who work in healthcare, social care, education or housing services

 

You can respond:

 

  • as an individual
  • on behalf of someone else
  • on behalf of an organisation

 

How long do we have to contribute?

 

We have twelve weeks to contribute to the consultation, closing on 28 January 2026.

 

If I have questions, who do I contact?

 

You can contact the Department of Health and Social Care directly at ndld.consultation@dhsc.gov.uk.

 

We wholeheartedly welcome this new milestone for the Down Syndrome Act 2022: it brings us one step closer to seeing equity and respect for the human rights of every individual in the Down syndrome community.

 

 

Important Links:

 

https://www.gov.uk/government/consultations/down-syndrome-act-2022-draft-statutory-guidance

  • Call for evidence outcome: Down Syndrome Act 2022 guidance: call for evidence

https://www.gov.uk/government/calls-for-evidence/down-syndrome-act-2022-guidance-call-for-evidence

Down syndrome needs profile paper: Research and analysis

https://www.legislation.gov.uk/ukdsi/2025/9780348275803/contents