The Down Syndrome Act: launch of the Call for Evidence

19 July 2022

Today we welcome the launch of the Government’s Call for Evidence which is the starting point in the consultation process for development of statutory guidance on a range of key issues which we hope will improve outcomes and life experiences of children and adults who have Down’s syndrome. There’s an easy read version here.

Consultation with a range of stakeholders is one of the requirements of the Down Syndrome Act, which received Royal Assent in April 2022. The Act aims to ensure that a number of relevant public bodies (such as health services and schools) follow appropriate steps to meet the needs of people with Down’s syndrome. You will find some additional background on the Act here and in this recent TES article which discussed some of the key issues through the frame of education.

Please note – the Down Syndrome Act and the Guidance developed through it apply in England only; matters relating to health, education and social care are devolved and the separate Parliaments in Wales, Scotland and Northern Ireland have not currently chosen to adopt the Act.

What is this Call for Evidence?

The Call for Evidence is a public consultation and an information gathering exercise which will run for 16 weeks. It is the first stage in the development of the Down Syndrome Act statutory guidance. The aim of this process is to gain information, evidence and views to inform the development of an initial draft version of the guidance, which will then also be widely consulted upon. This public consultation process and the subsequent development of guidance are being undertaken by the Department of Health and Social Care (DHSC). Although we expect many other organisations to engage and respond to this call for evidence, the DHSC alone are responsible for running this consultation then drafting the subsequent guidance.

Who Can Respond to the Call for Evidence?

The DHSC are very keen to hear from a range of people and organisations and networks through this consultation process. The Call for Evidence has easy read documentation and a different set of questions for:

• People with Down’s syndrome
• Families and carers
• Professionals
• People with other genetic conditions, including a learning disability

The range of topics that the DHSC is interested in hearing about are those listed in the Down Syndrome Act, ie the areas that ‘relevant authorities’ will have to pay ‘due regard’ to when the final guidance is published:

• Health
• Social Care
• Education & Youth Offending
• Housing

However, the Call for Evidence is also seeking thoughts on any other wider public services which the guidance could also apply to.

What will the DSA be doing during the Call for Evidence?

We have been engaging with DHSC officials for several months, and will continue to do so during the Call for Evidence. We have two key priorities during this 16 week consultation process:

1. We want to ensure our members and the wider Down’s syndrome community are aware of the Call for Evidence, and understand how they can respond.
2. We will work with a range of stakeholders (including our members, local groups and partner organisations) to ensure our call for evidence response is robust, evidence based and reflects the needs and diversity of all people who have Down’s syndrome.

In order to fulfil these objectives we will be developing and sharing resources, holding workshops and webinars and engaging directly with our members, especially those who have Down’s syndrome, on all aspects of the Call for Evidence.

As the Call for Evidence may be a new process to many of our members, we will be holding two identical webinars next week on Tuesday 26 July at 2pm and 7pm, where we will go through the different aspects of this call for evidence process in more detail.