Baroness in Waiting/Government Whip (Baroness Blake of Leeds) (Lab)

My Lords, these technical regulations will ensure that the Down Syndrome Act 2022 is up to date with current NHS structures. There are an estimated 47,000 people in the United Kingdom with Down syndrome. Despite existing legal duties, individuals with Down syndrome continue to face significant challenges in accessing the care and support they need. This Government are determined to break down barriers for people with Down syndrome and other disabled people. The Down Syndrome Act 2022, alongside the broader aims set out in the Government’s 10-year health plan for England, will help us to achieve this. I will begin by outlining the requirements of the Down Syndrome Act. The Act requires the Secretary of State for Health and Social Care to issue guidance to relevant authorities across health, social care, education and housing on the actions they should be taking to support the needs of people with Down syndrome. On 5 November we launched a public consultation on draft guidance under the Down Syndrome Act. We recognise the importance of ensuring that our documents are accessible, and Easyread versions of the draft guidance and survey questions have been made available so that everyone is able to make their voice heard. People can respond to the survey online, via post or by email, according to their individual preferences and needs. The draft guidance consolidates and raises awareness of the practical steps that relevant authorities should take to meet the needs of people with Down syndrome. Additionally, it helps to clarify the support and services that individuals with Down syndrome can expect to receive. We expect that the guidance will not only improve support for people with Down syndrome but benefit those with other conditions or a learning disability who have similar needs. This Government are committed to working with disabled people to ensure that their views are at the heart of what we do. The development of the draft guidance involved significant engagement with people with lived experience, as well as organisations that support them. The consultation offers another chance for these communities to express their views. For the guidance to deliver the improvements we want it to, effective local implementation will be essential. On 9 May 2023, NHS England published statutory guidance that says that every integrated care board should identify a member of its board to lead on supporting the ICB to perform its functions effectively in the interests of people with Down syndrome. The guidance also says that each ICB should have a designated lead for learning disability and autism, and for children and young people with special educational needs and disabilities. Collaboration between ICB leads and other partners across the integrated care system will be crucial. The ongoing legislation will help us assess whether the guidance is clear and informative for relevant authorities in meeting their legal duties to support people with Down syndrome. We will carefully consider all feedback to ensure that the final guidance is fit for purpose. I will now explain the changes that these amendment regulations will make. The regulations are designed to bring the Down Syndrome Act in line with changes to NHS structures made by the Health and Care Act 2022. Under the Down Syndrome Act: “Relevant authorities must have due regard” to the final statutory guidance “in the exercise of their relevant functions”, but the Act does not create any new functions beyond this duty. The Schedule to the Act specifies which authorities must have due regard to the guidance and the functions to which it applies. The regulations will amend this Schedule, replacing outdated references to clinical commissioning groups with integrated care boards and updating references to the National Health Service Commissioning Board with NHS England. This is an important technical change, as the Health and Care Act 2022 abolished CCGs, replacing them with ICBs, and renamed the National Health Service Commissioning Board as NHS England. For authorities not listed as relevant authorities in the Schedule to the Down Syndrome Act, the guidance will not be statutory, meaning that they are not legally obliged to have due regard to it. These amendments will bring ICBs and NHS England within the scope of the Act’s requirements, providing clarity and helping to ensure effective implementation. The regulations also align legislation with NHS England’s statutory guidance on ICB leads for Down syndrome. ICB leads are responsible for implementing the guidance, and it is therefore essential that ICBs are referenced in the legislation. It is important to note that the final guidance under the Down Syndrome Act will not be published until after these amendment regulations come into force. Our intention is to publish the guidance before the planned abolition of NHS England comes into effect. However, we recognise that other ongoing government reforms may affect the timing and content of the final guidance. To maintain accuracy and relevance, the guidance will be kept under review and updated to reflect new policy and legislative frameworks as necessary. A practical consideration is the timing of these regulations. They are drafted to come into force the day after the day on which they are made. This will ensure that the Down Syndrome Act duty to have due regard will apply to the correct authorities as soon as the final guidance is published. The regulations will not have any material effect until the final guidance is published, so we do not believe that further public engagement or notification is needed at this stage. By making these important and timely updates to the Down Syndrome Act, the regulations before the Committee will offer vital assurance that guidance is implemented effectively and in the spirit intended when the Act was passed. This supports our aim to improve life outcomes for people with Down syndrome and ensure that they receive the care and support they need to live the lives they want to. I beg to move.