Historic Down Syndrome Bill set to become law

November 26, 2021

A Bill focused on improving the lives of those living with Down Syndrome is expected to clear its first Commons hurdle today, after the Government announced it will support it to become law.

The Down Syndrome Bill has been introduced as Dr Liam Fox’s Private Member’s Bill. 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 own choosing for this Parliamentary session – only twenty MPs each parliamentary session is drawn at random in the ballot. Dr Fox, a former NHS Doctor and GP, decided to use this unique opportunity to bring forward the ‘Down Syndrome Bill’ as his Private Members’ Bill.

The Bill is co-sponsored by cross-party MPs and politicians from across the political divide attended an event with Dr Fox in Parliament earlier this week in support of the Bill.

The Down Syndrome Bill would mean the establishment of a Down Syndrome Act and will be the first of its kind in the world. The Act would improve the provision and outcomes for all those living with Down syndrome in England. This will encompass, amongst other areas, maternity care, education, health and social care and employment.

Campaigners are calling for the Bill to receive Royal Assent before World Down Syndrome Day on 21st March 2022.

TV Personalities have also shown their support for the Bill, including: CBeebies presenter and self-advocate George Webster; BBC’s Line of Duty actor Tommy Jessop; writer and creator of Call the Midwife Heidi Thomas; and the actress Sally Phillips.

The National Down Syndrome Policy Group (NDSPG) has launched a campaign in support for the Bill. The ‘Stand Up for Down Syndrome’ campaign includes a Change.org petition which has attracted the signatures of 30,400 people with Down syndrome, their families and supporters.

The NDSPG has organised a gathering outside Parliament today (Friday, 26th November) at 13:30hrs so that those in the Down syndrome community can publicly demonstrate their support of Dr Liam Fox’s Bill on the day of its second reading in the House of Commons.

If the Bill passes Second Reading in the House of Commons, which it is expected to do so, then Battersea Power Station in London will be lit up in blue, pink, purple on Friday evening – to celebrate this historic and ground-breaking moment.

Dr Liam Fox MP, the Down Syndrome Bill Sponsor said, ‘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.’

Tommy Jessop, actor from BBC’s Line of Duty crime drama and self-advocate said, ‘Everyone needs help now and then. We just need chances in life like anyone else.’

However, there has been some concern regarding the Bill. Steve Scown, CEO of Dimensions, the UK's largest not-for-profit supporting people with learning disabilities and/or autism, said, ‘We’re worried that an Act that obliges local authorities, schools and the NHS to prioritise people with Down Syndrome may lead to other people with learning disabilities being denied the scarce resources available. We’re worried that the allocation of those desperately scarce resources will become label-centred, not person-centred.

‘We’re worried that politically, this is a ‘divide and conquer’ strategy that will allow Government to point to its achievement of a new Act whilst further undermining the ability of all those involved in supporting the health, care and education of people with learning disabilities to speak with a single voice.’

Steve Scown added, ‘It is said that a rising tide lifts all boats and if a Down Syndrome Act drives increased investment in support for all those with learning disabilities, then it will be a fabulous piece of legislation. Our fear is that the rising tide, whilst floating the Down Syndrome boat, may simply sink the other boats around it.

‘Our earnest will is for this Bill to pass, but only alongside a substantially improved and ringfenced funding settlement for all those living with learning disabilities.’

An explainer video of the bill can be found on Twitter.

 

 


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