Down Syndrome Act 2022: Draft Statutory Guidance Consultation

Zubir Ahmed Excerpts

Wednesday 5th November 2025 Written Statements

[The Parliamentary Under-Secretary of State for Health and Social Care (Dr Zubir Ahmed)]

People with Down syndrome have the right to make informed decisions about their future. This Government recognise our duty to support them in achieving their goals and aspirations in life.

There is estimated to be around 47,000 people in the UK with Down syndrome who, despite existing legal duties and frameworks, often face real challenges accessing services and the right support due to a lack of understanding of their needs and how to meet them.

We are determined to set this right. That is why we are breaking down barriers to opportunity for disabled people through our 10-year health plan, and today we are launching a consultation on draft statutory guidance under the Down Syndrome Act 2022.

I strongly encourage everyone with an interest to respond to the consultation and share their views.

The guidance supports the Government’s aims to ensure disabled people’s access to, and experience of, services is fair and effective. It does this by raising awareness and bringing together in one place the practical steps that organisations should take to meet the needs of people with Down syndrome. It also helps to clarify the support and services people with Down syndrome can expect to receive.

During the passage of the Down Syndrome Act, it was clear there were concerns about ensuring that the guidance could have the widest possible benefit for people with other chromosomal conditions, genetic conditions and/or a learning disability who have similar needs, and we have sought to address areas where there are overlaps.

We expect the guidance to improve support for people with Down syndrome and also for those with other conditions and/or a learning disability who have similar needs. An equalities impact assessment has been published alongside the consultation.

In March 2024, the previous Government formally commenced the Down Syndrome Act, bringing into force the duty for the Secretary of State to consult on and publish guidance. On 21 October 2025, we laid amendment regulations to ensure the Act reflects current NHS structures.

I am grateful to Sir Liam Fox for introducing his private Members’ Bill, now the Down Syndrome Act. I fully recognise that quite some time has passed since the Act received Royal Assent in April 2022. Following close engagement with our partners, this Government are now in a position to publish the draft guidance for public consultation, with today’s announcement taking us a step closer to the final guidance being published.

The consultation will run for 12 weeks, and easy read versions of the draft guidance and the consultation questions have been made available, so everyone is able to make their voice heard.

I am proud to say that people with lived experience, and the organisations who support them, have been at the heart of the work to develop this guidance.

I would like to thank all those people with lived experience, their families and carers, and partner organisations who have worked tirelessly to help us produce the draft guidance for consultation, and to all colleagues who supported us to get this over the line.

I look forward to receiving responses to this consultation to help us to develop guidance that has a real and lasting impact on people’s lives.

[HCWS1026]