Monday, 20 November 2023

Campaign Reply: Down's Syndrome

I know that with appropriate help and support, most people with Down Syndrome lead healthy, active and more independent lives, achieving more than ever before. I do recognise, however, that those with Down Syndrome face significant challenges across all stages of life.

The Down Syndrome Act requires the Secretary of State for Health and Social Care to publish guidance for public bodies to ensure they are clear on how they should meet the needs of people with Down Syndrome. Authorities will be required to take the guidance into account when providing health, education, social care and housing services.

In 2022, a call for evidence was launched to inform draft guidance and the Government encouraged people with Down Syndrome, their families and their carers, to respond. A consultation on the draft guidance will then take place before the final guidance is published in due course.

A named lead on Integrated Care Boards will be responsible for the implementation of guidance, which will go a long way towards ensuring that the guidance is implemented fully and as intended. The guidance will also be laid before Parliament, giving MPs the opportunity to scrutinise it and look, in real time, at how it is working.

It is essential that the voices of those with Down Syndrome, their families and their carers are heard, and that the guidance is fit for purpose.

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