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‘World first’ UK Down Syndrome Bill hopes to boost inclusion of those with the condition

A new Down Syndrome Bill will receive a second reading in Parliament on 26th November 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.

 

 

 

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.”

Heidi Crowter, a prominent campaigner who recently challenged the UK’s abortion-up-to-birth law for unborn babies with Down syndrome also voiced her support for the legislation and said it could help to change the narrative: “I suspect that the world has not yet discovered the Down Syndrome super powers, however, a Down Syndrome Act could help people to get to know us better.”

“To change the perception of Down Syndrome, there are some big issues that people with Down Syndrome and their parents and families – like more of us getting jobs and getting help to be a success in the jobs and to stay there,” Heidi’s husband James, who also has Down Syndrome, added.

“We need good medical care and help to stay well. Sadly, people like us suffered a lot during the recent pandemic. We need help to turn things round. We need to be part of the government’s long-term plan. Equality and long life for all!,” another trustee speaking on behalf of the organisation added.

The progress on the proposed law follows a campaign led by Tommy Jessop, an actor with Down Syndrome who starred as Terry Boyle in BBC’s Line of Duty, former cabinet minister and Conservative MP Dr Liam Fox, and Racheael Ross from the National Down Syndrome Policy group.

The Bill was introduced as a Private Members’ Bill by Dr 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.”

Tweeting about the law passing to its second reading, Dr Fox said that he was “absolutely delighted” and said that it would make a “real difference” to the lives of many.

“Absolutely delighted that the Government have announced they will be supporting my Private Members’ Bill. This Bill is a world first and will make a real difference to many lives. #DownSyndrome.”

 

 

He also thanked Minister of State for Care and Mental Health, Gillian Keegan, Secretary of State Sajid Javid, the Department of Health and Social Care and the National Down Syndrome Policy Group, who he said “have long campaigned for this”. In the comments section, many expressed their thanks to the MP for introducing and campaigning for the Bill, stating that the legislation would positively impact family members with the chromosomal condition.

 

One parent of a child with Down’s Syndrome said that the ‘hard fought for’ law would hopefully help to shine a light on the worth of those with Down’s: “Those touched by these beautiful human beings need no convincing of their worth, unfortunately there are many others who need to be educated…”

 

Secretary of State for Health and Social Care Sajid Javid MP said that the Bill was important to tackle the “significant challenges” people with Down’s syndrome routinely face.

“People with Down Syndrome face significant challenges and I am pleased to support @LiamFox’s bill to recognise their specific health, care, education and housing needs,” he said.

The Bill will put people with Down’s Syndrome on an equal level with people from other minority groups, thus ensuring that councils and public bodies including schools, NHS organisations, social care services and job centres are required to meet their needs. If it passes its second reading in the House of Commons, it will then advance to Committee stage, 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 become law.

It has been quite a year for people with Down’s syndrome, with Heidi Crowter rising to prominence as a powerful and articulate campaigner, while Tommy Jessop, the first actor with the condition to star in a prime-time BBC drama, and the first to become a full voting member of BAFTA, was awarded a doctorate honoris causa by the University of Winchester for his performance in the hit series.

Praising the bill, the talented actor told The Times that those with Down’s Syndrome should have “the same chances as everyone else” and said that true equality was long overdue.

“The most important event for people with Down’s Syndrome is to have a voice, to speak up about what they really want in life, and to show what they truly are capable of. Don’t tell us what to do, but help us make our own choices and live our everyday lives to the full. It’s time now for people with Down’s Syndrome to have the same chances in life as anyone else. We have waited long enough to be treated equally,” Jessop said.

 

Credit: Nathan Anderson / Unsplash

However, it hasn’t all been positive – and it’s clear that those with Down’s syndrome still face what seems like routine disability discrimination. As a reminder of this discrimination, we only have to cast our minds back to May this year when Richard Dawkins, on live radio, reiterated his claim that knowingly bringing a child with Down syndrome into the world is “immoral,” while in September, Heidi Crowter lost her High Court challenge to the Government over a law that allows abortion without time limit for a baby with Down’s syndrome. Many hoping for a greater sense of inclusion and equality when it comes to Down’s syndrome will wait with bated breath as the law makes its passage through parliament.

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