The Down Syndrome Act
The Down Syndrome Act completed its journey through the Houses of Parliament and received Royal Assent on the 28 April 2022.
We now welcome the opportunity to make a significant contribution to the guidance that is at the heart of the Act.
It is crucial that this guidance reflects the varied needs of all people who have Down’s syndrome. Throughout it’s development, we will be engaging with all of our members to gather evidence and views, and to provide support to enable our affiliated groups and members provide their own responses to this consultation if they wish.
We have developed some resources which provide some additional information on exactly what the Act says, is and does:
Legal overview of the Act from Steve Broach,
Barrister 39 Essex Chambers.
Our FAQs (June 2022) covering some of the queries we hear regarding the Act.
You can also see two video presentations which were recorded at our ‘Legal Implications of the Down Syndrome Act’ event which took place on the 16 June 2022:
Steve Broach – Overview of the Down Syndrome Act
Maria Bloom (IPSEA) – The use of legislation & Guidance when supporting families
We have created these resources in response to the many queries we continue to receive from families who remain unsure of exactly what the Act does, and how it can be applied to support people with Down’s syndrome.
The Call for Evidence
On 19 July the Department of Health and Social Care launched the Government’s Call for Evidence, the starting point in the consultation process for development of statutory guidance as required by the Down Syndrome Act.
Online consultation events
Join us at one or more of these sessions to discuss priorities and share your views.
The Down Syndrome Act requires the Secretary of State to develop and consult on guidance that a range of ‘relevant authorities’ (including health services, local authorities and schools) must have regard to. You can find further information on the Act and what it means in law here.
On the 19 July 2022 the Government launched a Call for Evidence on the Down Syndrome Act – this is the first of two stages of public consultation that will inform and development and content of the Guidance.
Like many organisations, we are actively seeking the views of our members in order to inform our response to the Call for Evidence.
One of the ways we are doing this is by holding a series of online meetings.
Some of the meetings will be about one of the themes outlined in the Call for Evidence; others will be tailored to a particular group of participants.
Whilst we are hoping to get as much feedback as possible to inform our response, we also strongly encourage all our members and supporters to feed into the main DHSC Call for Evidence survey.
You can also feed your views on the Call for Evidence into us by completing a short survey.
If you would like to discuss any of the issues raised by the Call for Evidence, and/or any of the DSA activities and our response, please contact us at policy@downs-syndrome.org.uk.
You are welcome to come along to as many consultation events as you wish, but please be aware that space in some sessions will be limited.
Thematic consultation sessions
These sessions will be looking at our priorities on all the already identified key areas named in the Call for Evidence.
These sessions are for people who have Down’s syndrome and their families.
6 October 2022 | 7.00 – 8.00pm
14 September 2022 | 7.00 – 8.00pm
2 November 2022 | 7.00 – 8.00pm
20 September 2022 | 7.00 – 8.00pm
20 October 2022 | 7.00 – 8.00pm
This session is for people who have Down’s syndrome, and their family members, from Ethnic Minority communities.
This session will be used to explore any key issues and gain feedback across the range of issues covered in the Down Syndrome Act.
10 November 2022 | 7.00 – 8.00pm
This session will look at other key issues the Guidance should cover, and the process of developing the guidance – how will we know the guidance is being followed? How will it be launched and promoted?
29 September 2022 | 7.00 – 8.00pm
This is a network meeting for organisations supporting and representing people with Genetic Conditions and Learning Disabilities.
21 September 2022 | 2.00 – 3.00pm
These sessions are for people with Down’s syndrome and their family members.
We will look to identify the key areas the guidance should cover for younger, and older families.
19 October 2022 | 7.00 – 8.00pm
28 September 2022 | 7.00 – 8.00pm
We will be holding three meetings via zoom to gather information from parents/family carers of people with Down’s syndrome and ASD/ADHD (or where this is suspected).
15 September 2022 | 20 September 2022 | 11 October 2022
10.30am – 12.30 noon
We are keen to gather the views of local support groups, of all sizes, delivering support in all sorts of different ways.
5 October 2022 | 7.00 – 8.00pm
These sessions are for professionals who already support children and adults who have Down’s syndrome, getting their perspectives on the key issues which the guidance should cover.
12 October 2022
2.00 – 3.30pm
6 October 2022
2.00 – 3.00pm
13 October 2022
2.00 – 3.00pm
Questions?
If you have any questions regarding the Down Syndrome Act, or any of the national policy work of the Down’s Syndrome Association, please contact us at policy@downs-syndrome.org.uk.