Question to the Department of Health and Social Care:

To ask His Majesty's Government whether they plan to develop an easy-read version of the Down Syndrome Act 2022.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The Down Syndrome Act 2022 was published with explanatory notes to assist the reader in understanding the act. Under the Down Syndrome Act, My Rt Hon. Friend, the Secretary of State for Health and Social Care is required to give guidance to the relevant authorities in health, social care, education, and housing services on what they should be doing to meet the needs of people with Down syndrome.

A call for evidence on the guidance under the Down Syndrome Act was launched on 19 July 2022 and ran for 16 weeks. An easy read version of the call for evidence was published which included an overview of the Down Syndrome Act, and which is available on the GOV.UK website. The Department has engaged with stakeholders on the call for evidence, including sharing an easy read version of a draft summary of the results.

We intend to issue the draft guidance for public consultation by the summer, including easy read versions.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are considering taking to improve healthcare provision and accessibility for individuals with Down Syndrome.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The Government is committed to improving outcomes for people with Down syndrome.

Through implementation of the Down Syndrome Act 2022, we will improve the lives of people with Down syndrome by improving their access to services, including health and care services. NHS England has published statutory guidance requiring every integrated care board (ICB) to identify a member of its board to lead on supporting the ICB to perform its functions effectively in the interest of people with Down syndrome.

Under the Down Syndrome Act, my Rt Hon. Friend, the Secretary of State for Health and Social Care is required to give guidance to the relevant authorities in health, social care, education, and housing services on what they should be doing to meet the needs of people with Down syndrome.

The guidance will raise awareness of the specific needs of people with Down syndrome and bring together in one place everything that the relevant authorities should already be doing to support people with Down syndrome. A working draft of the Down syndrome statutory guidance was shared with sector partners in December 2024. Officials have been working through the feedback received and have engaged all relevant Government departments to produce a second draft of the guidance. The Minister of State for Care wrote to sector partners with an update in March 2025. We intend to publish the draft guidance for consultation by the summer, including easy read versions.

Beyond the Down syndrome guidance, under the Equality Act 2010 health and social care organisations must make reasonable adjustments to ensure that disabled people are not disadvantaged. Since 2016, all National Health Service organisations and publicly funded social care providers are expected to meet the Accessible Information Standard, which details the recommended approach to supporting the information and communication support needs of patients and carers with a disability.

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