Inaugural APPGDS Meeting becomes a catalyst for the Bill
For a long time, members of the Down syndrome community had voiced that their specific needs were not fully recognised, understood, or met. The idea of creating updated legislation to help with this problem had been gathering traction for some time within the DS community.
NDSPG founding members and lived experience experts Fionn Crombie Angus, Bethany Asher, Heidi Crowter and James Carter identified issues that affect them, and described their vision on changes they would like to see happen to improve their lives, in an Advocacy Speech that was made public on 4th May 2021.
The first All-Party Parliamentary Group for Down Syndrome in its current form met on 12th May 2021, and this speech was shared with MPs who attended. The voices of people with Down syndrome advocating and sharing their lived experiences had a powerful effect.
NDSPG Video Launch of Groundbreaking Down Syndrome Bill
With a new direct connection established to Parliament via the APPGDS, the message spread out further. Campaigning went into full-swing and events quickly gathered momentum.
Advocates energetically campaigned to promote a Down Syndrome Bill, and on 14th May 2021, Founding Officers from the NDSPG sent a personal message to all MPs by video. Among others, self advocates and actors Bethany Asher and George Webster promoted the Bill, asking MPs to nominate the Down Syndrome Bill in the Private Members Bill in an upcoming ballot in parliament.
After the initial APPGDS meeting, over one thousand letters were sent from the Down syndrome community to MPs and peers, requesting that they sponsor a Down Syndrome Bill.
Dr Liam Fox MP takes up the cause of the Down Syndrome Bill
Dr Liam Fox MP drew the ballot and had a rare opportunity to introduce a Private Members Bill for a cause of his own choosing. He had been approached by thousands of organisations to promote their cause. However, the idea of a Down Syndrome Bill resonated deeply for him and he became dedicated to this campaign, also drawing in widespread support across all parties. He expressed his personal conviction about the necessity for the Bill, describing the difference he was sure it would make.
In an article in the Times, Dr Fox said “Every so often you get the chance in politics to make meaningful change and that is what I intend to do.”
The NDSPG worked closely with Dr Fox and his team to provide the initial drafting of the Bill, reflecting the discussions of the APPGDS. The draft was amended by government civil servants, and the government’s support ensured it was a success.
First Reading in the House of Parliament
Incredibly, only five weeks after the inaugural APPGDS meeting where a desire for this legislation had been officially expressed to representatives of Parliament, the Down Syndrome Bill had its first reading in Parliament!
The First Reading was announced in parliament by the Bill’s sponsor Dr Liam Fox on Wednesday 16th June 2021. On the occasion of the launch of the Bill, NDSPG advocates and trustees expressed their hopes about how the Down Syndrome Bill could positively impact their lives, and pledged their support of Dr Fox’s efforts.
Second Reading in the House of Parliament
After the first reading, support flooded in from all corners. Dr Liam Fox met with ministers and politicians who had privately and publicly backed the Bill, and his lobbying included meeting with the Education Secretary, Nadhim Zahawi on 22nd Oct 2021, and Minister for Care and Mental Health, Gillian Keegan on 1st Nov 2021. Health Minister Sajid Javid declared support of the Bill on 14th Nov 2021.
Individuals, families and carers were encouraged to petition their MPs to support the Bill, and a petition to support the Down Syndrome Bill (or Act) quickly reached almost 32,000 signatures.
The Down Syndrome Bill was becoming widely recognised as a world first, with the UK leading the way in recognising the specific needs of people with Down syndrome.
The text of the Down Syndrome Bill was published officially in Parliament, and on 18th November 2021, the Easy Read version of the Bill was made available.
Ahead of the second reading, the public showed their support in creative ways, including Battersea Power Station lighting up in NDSPG colours in support of the Bill, and the London skyline being lit up with the same hues the following day.
The Second Reading of the Down Syndrome Bill in Parliament happened on 26th November 2021. The full video of the parliamentary proceedings is available here. It received widespread cross-party support and was voted through to the next stage towards becoming law. Dr Liam Fox explained the implications and next steps for the Bill in this video.
Press Releases and Media Coverage
On the morning of the Second Reading, 26th Nov 2021, a flurry of media coverage brought the Bill to the attention of the nation, with BBC Radio 4, BBC Breakfast, GB News, and many others reporting with enthusiasm about the Bill and the changes it would have the power to bring about.
Over 20 press briefings were given by campaigners such as Ken Ross, NDSPG Founding Officer – who gave 13 briefings that day alone on TV, radio and newspapers!
Rally in Parliament Square
On 26th November 2021, during the second reading, a large gathering of individuals in the Down syndrome community, MPs, charities, and a number of celebrities supportive of the cause met at a rally in Parliament Square to show their support of the DS Bill. The group proudly gathered to show the world what the Down Syndrome Bill would mean for them and their families.
Next Steps
With truly astonishing speed, many individuals and groups had united to bring about the Down Syndrome Bill, at a pace no-one anticipated. It seemed that the time was right for this legislation.
Meanwhile, to ensure structured integration of the voices and steering from self advocates who have Down syndrome, plans also rapidly unfolded to create an Advisory Group, specifically comprised of representatives who are experts by experience.
Stay tuned for our next blog on the launch of the NDSPG Advisory Group!
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