More than 200 people in Cheshire will influence government policy by voicing their views and experiences of having Down syndrome or supporting someone with the genetic condition as part of a month-long consultation carried out by the charity Down Syndrome Cheshire.
There are around 1 million people in Cheshire with approximately 750 living with Down syndrome. They all have an extra copy of chromosome 21 in common.
Parents, carers, professionals and, most importantly, people living with Down syndrome in the county gave their views on Education, Employment, Health, Social Care, Housing and Employment which were captured in a report and will now be considered by civil servants writing the Act, which is the first of its kind in the world.
Down Syndrome Cheshire CEO, Lawrence Caygill, comments,
“We have been overwhelmed with the number of our members and those who support them adding their voice to the consultation. Everyone has a right to fair and equal opportunities so that they can live the life they choose and we are optimistic that the new Down Syndrome Act will reflect that. For too long now the provision and outcomes for people living with Down syndrome have been inadequate. It’s time for change.”
Chair of Down Syndrome Cheshire, Julie Duff has been working closely with the National Down Syndrome Policy Group (NDSPC) and Positive About Down Syndrome (PADS) to campaign for change. She recently visited the Houses of Parliament with her son Josh to highlight the You-can’t-put-me Down syndrome photographic campaign that aims to challenge and rewrite the medical maternity narrative by showcasing young people and adults with Down syndrome living their best lives.
16-year-old Josh from Hartford in Cheshire is a keen sportsman enjoying rugby, dance, football and gymnastics. Josh was photographed in action for the campaign and his image was featured in the exhibition and on Sky News.
The awareness exhibition was visited by MPs including Northwich MP Mike Amesbury.
Chair of Down Syndrome Cheshire, Julie Duff, comments,
“I am delighted about how many people’s voices were heard throughout the consultation roadshow, including parents, professionals and of course people with Down Syndrome. It is important that Cheshire voices are heard in the heart of government to hopefully affect positive change.”
For more information about the campaign please visit Down Syndrome Cheshire’s website:
About Down Syndrome Cheshire: Down Syndrome Cheshire currently supports more than 322 people who have Down syndrome in the county to live the life they choose and 3000 people who support them. The charity provides advice, information, education advocacy, peer support, speech therapy, employability, friendship groups and training as well as helping families and informing the wider community about Down Syndrome.
Follow Down Syndrome Cheshire on Facebook @DSCheshire and Twitter @downscheshire
About the Down Syndrome Act: On 28 April 2022, the Down Syndrome Bill was signed by the Queen, making it the Down Syndrome Act 2022. The Bill was introduced by Dr Liam Fox. The Government has been gathering evidence on where there are gaps in services, knowledge and support for people with Down Syndrome and their families. The intention of the Act is to improve the provision and outcomes for all those living with Down syndrome encompassing maternity care, education, health and social care, housing and employment.
Pictured - L-R Josh Duff and Mike Amesbury MP
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