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‘A huge achievement’: ‘Groundbreaking’ UK Down Syndrome Bill passes second stage in Parliament

A ‘groundbreaking’ UK Bill which aims to improve the lives of those living with Down’s syndrome has cleared its first parliamentary hurdle, passing its second reading in the House of Commons. Earlier this month, Gript reported that the Bill had passed its first reading in the House of Commons after gaining backing from the UK government.

The proposed law would mean that people with Down Syndrome will gain legal recognition as a specific minority group in a bid to ensure that all public bodies meet the needs of those with Down Syndrome. The Bill now advances to Committee stage, followed by report stage and a third reading. The legislation would then have to pass through the same five stages in the House of Lords before it could officially become law.

The Bill was introduced as a Private Members’ Bill by Conservative MP Dr Liam Fox in June, and it’s objective is to “make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly; and for connected purposes.” Dr Fox was selected, for the first time in his thirty years as an MP, in the Private Members’ Ballot to bring forward a Bill of his choice for this parliamentary session – only twenty MPs each parliamentary session are drawn at random in the ballot.

Dr Fox, a former NHS Doctor and GP, opted to use the one-off opportunity to bring forward the ‘Down Syndrome Bill’ as his Private Members’ Bill. The Bill has received cross-party support from MPs, and politicians from across the political divide attended an event with Dr Fox in Parliament last week in support of the Bill, which has been described as ‘world-first’.

Tweeting following the advancement of the Bill in the House of Commons on Friday (26 November), Dr Fox said it was “a huge achievement” and that there were “too many people to thank in one tweet.”

 

 

The Down Syndrome Bill would create a Down Syndrome Act, which will be the first of its kind in the world. Campaigners say that the Act would improve the provision and outcomes for all those living with Down’s syndrome in England.

Campaigners say that the policy would benefit people with Down syndrome and improve support offered to them in health, education, employment, housing and within the wider community. The National Down Syndrome Policy group recently released a video message welcoming the news. In the video, trustees of the group – who have Down Syndrome – thanked those who had worked on the Bill: “Thank you to Dr Liam Fox for making The Down Syndrome Bill a reality. We are trustees of the National Down Syndrome Policy Group, and there should be nothing about us without us.”

Advocates for the new legislation are calling for the Bill to be made law in the run-up to World Down Syndrome Day, which will take place on 21 March 2022. Thousands of UK constituents have written to their MPs asking them to support the Bill, with many people getting involved in the campaign by sharing photos of their loved ones with Down’s syndrome on social media to express their thanks and communicate the importance of the Bill.

The National Down Syndrome Policy Group (NDSPG) has launched a campaign in support of the Bill. The ‘Stand Up for Down Syndrome’ campaign features a Change.org petition, which has so far gathered over 30,400 signatures, including many people with Down’s syndrome, their families, friends and supporters of the legislation. Thousands of constituents have written to their MPs as part of the campaign urging them to support the Bill.

On Friday afternoon, ahead of the Bill’s second reading in the House of Commons, the NDSPG organised a gathering outside Parliament, giving a chance for those in the Down’s syndrome community to publicly demonstrate their support of Dr Liam Fox’s Bill. And on Friday night, Battersea Power Station in London was lit up in blue, pink and purple to celebrate what campaigners dubbed a “historic and ground breaking moment”.

Health minister Gillian Keegan, who has a nephew with Down’s Syndrome, told MPs during Friday’s debate that all people with the chromosomal condition should be able to enjoy all aspects of society while getting access to the right services and support.

“People with Down’s syndrome should have the opportunity to enjoy all aspects of our society and to have access to the services and support that will enable them throughout their lifetime. I wholeheartedly support the Down syndrome bill,” Ms Keegan said.

“I know that today people with Down’s syndrome are struggling to access the services they need and I’ve seen this with my own family. It is not right, it must change and we will change it,” she added.

Meanwhile, Dr Liam Fox MP, the sponsor of the Bill, said he was thrilled to have a chance to deal with some of the obstacles faced by those with Down’s syndrome. Dr Fox said the new legislation was needed now because people with Down’s syndrome are starting to outlive their parents. He said it would “lighten the burden” of parents who worry about what will happen to their children after they pass away.

“I am thrilled to bring forward a Bill to deal with the issues faced by those with Down syndrome. My aim is to deal with three main areas. The first is to de-stigmatise Down syndrome. The second is to ensure that current provision of services is improved. The third is to look ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents,” Dr Fox said.

Heidi Thomas, Writer and Creator of Call the Midwife whose late brother David had Down syndrome, also spoke out in support of the Bill, referring to the joy her own brother brought to those who loved him: “Having David as a sibling enabled me to live my best life – he taught me so much, and brought joy to all who loved him. But I want everyone who has Down syndrome to live their best life, with their gifts acknowledged and their specific needs embraced, understood, and enabled. The Down Syndrome Bill could really open the door to that, and it has my full support.”

With the legislation securing government support, it is likely to become law.

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