DOWN Syndrome Cheshire – which supports over 350 members of families with Down syndrome – was selected to take part in a national consultation for the Down Syndrome Act by the National Down Syndrome Policy Group with a recent visit by a group of civil servants from the DHSC.
The Down Syndrome Act originated from a private member’s bill submitted by Dr Liam Fox MP in the summer of 2021 and completed its journey through the Houses of Parliament and received Royal Assent on the 28 April 2022. Down Syndrome Cheshire then undertook a consultation of over 200 people in the region who provided their contributions as a call for evidence for the bill.
Since then the charity has been working with the National Down Syndrome Policy Group (NDSPG) to assist in providing lived experiences for the Guidance that supports the Down Syndrome Act. The NDSPG supports people with Down syndrome in having a say in the formation of policies in matters that impact their lives.
Chair of Down Syndrome Cheshire, Julie Duff comments: “We’re so proud and privileged that the National Down Syndrome Policy Group asked us to be a part of this life-changing consultation for our members and we welcomed representatives of the Department of Health and Social Care to our centre.”
The charity is also working in partnership with Petty Pool College, who will be bringing their students to Down syndrome Cheshire’s headquarters to contribute to the consultation.
Julie adds: “Petty Pool students and members of our #iChooseBoard have been working hard in teams behind the scenes for the past five months, understanding the process and preparing to contribute their lived experience to the guidance that will help to shape the Down Syndrome Act.”
Over 20 members of the Cheshire community who have Down syndrome and are aged 18+ contributed to the event. The whole day was designed to be accessible for charity members, taking any individual accessibility needs into consideration. This included provision of easy read documentation and communication prompts to make sure that the voices of all the community could be heard.
Jonathan Angus of the National Down Syndrome Policy Group comments: “This incredibly important consultation with the DHSC has come from working with our advisory board, including members from Cheshire who sit on this board. At the event we heard and recorded the opinions of those living with Down syndrome so that discussions can be facilitated about changes that are needed to address issues important to them to support the Act.”
