Today, on World Down Syndrome Day, I am pleased to provide an update on the Government’s progress on implementation of the Down Syndrome Act 2022. The Act seeks to improve life outcomes for people with Down syndrome and imposes a duty on the Secretary of State for Health and Social Care to give guidance to relevant authorities about how to meet their needs.

On 18 March 2024, we formally commenced the Down Syndrome Act 2022 by way of regulations, which bring into force all the provisions of the Act and is a necessary step towards the publication of guidance. This progress follows over 1,500 responses to our Call for Evidence from people with Down syndrome, their families and carers, professionals, and organisations, and we will be publishing our summary of these findings shortly. We have created easy-read and accessible content to ensure everyone can fully engage and be a part of the process to develop the statutory guidance.

This year’s global World Down Syndrome Day theme is to “End the stereotypes”. Working with people with personal experience, voluntary sector organisations and other experts to develop the guidance has brought a wealth of information to better understand the needs of people with Down syndrome and how we can address those needs. By raising awareness and understanding of the needs of people with Down syndrome, we can help to ensure every person with Down syndrome has the opportunity to live full and fulfilling lives.

Engagement with people, professionals and organisations representing different genetic conditions has been an important consideration in developing the guidance, particularly identifying where tailored services and support for people with Down syndrome would benefit those with similar needs. We have also worked closely with the Department of Education on adding a question in relation to Down syndrome to the school census to provide helpful information to support implementation of the Act and facilitate better planning for local authorities.

I would like to thank all those people with personal experience, national and local charities, Integrated Care Board leads for Down syndrome and others that have fed in their views and informed our work to develop the guidance. I am grateful to My Right Honourable Friend for North Somerset (Sir Liam Fox MP) for introducing his Private Members’ Bill which is now the Down Syndrome Act, and to Honourable Members for their continued support for this work.

We look forward to issuing the draft statutory guidance for public consultation later this year.