Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that the final guidance under the Down Syndrome Act 2022 provides direction on required provision, including speech and language support and transition to adulthood; and how implementation will be monitored.

Under the Down Syndrome Act 2022, my Rt Hon. Friend, the Secretary of State for Health and Social Care, is required to give guidance to 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.

We considered a range of evidence from our Call for Evidence and engagement when developing the draft Down syndrome guidance, currently out for public consultation, including research on speech and language therapy (SLT).

The draft guidance highlights that people with Down syndrome are likely to have communication needs and sets out support that can be provided, including that people with Down syndrome should be able to access speech and language assessment and support in a timely manner. The guidance is also clear that NHS commissioners and providers may offer people with Down syndrome, and their families and carers, a range of SLT services and interventions to support their communication, tailored to their specific needs. This should include early intervention services starting from birth, continuing through early years to support a good start in life, and then into primary and secondary school and transition to adulthood, including transitions from child to adult care and support.

Relevant authorities, as defined in the schedule to the act, have a duty to have due regard to the final guidance once it is published. The act does not create any new functions beyond this duty. Rather, it brings together existing statutory requirements and guidance that relevant authorities must and/or should already be complying with to support people with Down Syndrome and people with other conditions and/or a learning disability who have similar needs.

NHS England published statutory guidance on 9 May 2023 which says that every integrated care board (ICB) should 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. The statutory guidance sets out NHS England’s expectations about fulfilling executive lead functions and outlines the responsibilities of these roles in more detail at the following link:

https://www.england.nhs.uk/publication/executive-lead-roles-within-integrated-care-boards/