Gillian Keegan – 2022 Statement on Draft Down Syndrome Act Guidance

The statement made by Gillian Keegan, the Minister for Care and Mental Health, in the House of Commons on 19 July 2022.

Today, I am delighted to announce the launch of a national call for evidence to inform the development of the draft Down Syndrome Act Guidance.

There are around 47,000 people with Down’s syndrome in the UK and we know that people with Down’s syndrome often face significant challenges and can struggle to access appropriate services and support.

I am grateful to the right hon. Dr Liam Fox MP for bringing forward the private Member’s Bill which is now the Down Syndrome Act. This important legislation aims to improve access to services and life outcomes for people with Down’s syndrome. It does this by requiring that relevant authorities when providing certain health, social care, education and housing services take account of guidance issued by the Government—the guidance. The guidance will set out the steps it would be appropriate to take to meet the specific needs of people with Down’s syndrome.

Since the Act received Royal Assent on 28 April 2022, we have been engaging with stakeholders and developing the national call for evidence which will inform the guidance.

This call for evidence is an important stage in the process leading to the publication of the guidance in 2023. It will allow us to collect invaluable information over the next few months, which will then be used to inform and support the production of draft guidance. The draft guidance will in turn be published for full public consultation before final guidance is published next year.

Through the call for evidence, we want to hear about the specific support needs of people with Down’s syndrome and examples of best practice in service delivery from across the country. We want to hear views on other areas that guidance could cover such as employment support and potential linkages with other genetic conditions that we committed to explore during the Act’s passage through Parliament.

We want to hear from all relevant stakeholders including people with Down’s syndrome, their families and carers, organisations that represent them, and professionals such as those working in health, social care, education and housing.

The process must be as accessible as possible and therefore the call for evidence will run for the maximum duration of 16 weeks. Alongside the online questionnaire and an easy read version, we will work with voluntary sector organisations to undertake workshops and focus groups to input into the call for evidence. We want to make sure we gain the views of everyone, including children and young people with Down’s syndrome, their families and carers.

Following this national call for evidence, we will continue to engage with people with Down’s syndrome and other stakeholders to develop the guidance. The draft guidance will also be subject, in due course, to a full public consultation.

The guidance represents a real opportunity to improve the way that services are arranged and delivered but it is essential that it is based on the views and expertise of those it will affect. I therefore strongly encourage everyone to complete the call for evidence and share widely.

I am determined that people with Down’s syndrome should have the opportunity to be fully included in our society and to have access to the services and support that enable that, throughout their lifetime.