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Creating a world where people with Down’s syndrome are equally valued

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Join us outside the High Court on Thursday

I hope you are well. At 10:30am on Thursday (23 September) the High Court will be releasing their decision on Heidi Crowter and Máire Lea-Wilson's landmark case against the UK Government. We are going to be meeting at 9:30am outside the High Court to show support for...

our vision
A world where people with Down’s syndrome are equally valued

our vision

We are a group of over 17,000 people with Down’s syndrome, their families and supporters who are actively working to build a United Kingdom (UK) where people with Down’s syndrome are equally valued and have an equal chance of being born.

Currently around 90% of babies found to have Down’s syndrome in the UK are aborted. This alarmingly high percentage is as a result of discriminatory legislation, policies and practice – as well as wider cultural attitudes towards life with Down’s syndrome.

Existing prenatal screening programmes are perpetuating negative stereotypes of Down’s syndrome, creating stigma, and leading to discrimination against people already living with Down’s syndrome.

As an organisation we work to help reform problematic legislation, policies and practice – alongside helping build a wider culture that accepts and embraces people with Down’s syndrome.

While we as a society have come a long way in our attitudes toward people with Down’s syndrome, there is still a large disconnect between the way that people with the condition are celebrated in society, and the continued existence of legislation, policies, practice and attitudes that lead to the very high number of babies being aborted when they are found to have Down’s syndrome.

Our goal is one of equality and to see an end to this disconnect – to stop babies with Down’s syndrome being screened out by abortion in the UK, to the point where a baby found to have  Down’s syndrome has the same chance of being born as any other.

our focus

We support the updating of UK legislation to ensure that babies with Down’s syndrome are not singled out by abortion law

Currently in the UK, there is a general 24-week time limit for abortion, but if the baby has a disability, including Down’s syndrome, cleft lip and club foot, abortion is legal right up to birth.

The UN Committee on the Rights of Persons with Disabilities has consistently criticised countries that provide for abortion on the basis of disability. The UN Committee on the Rights of Persons with Disabilities’ concluding observations on the initial report of the United Kingdom of Great Britain and Northern Ireland made a key recommendation that the UK change its abortion law so that it does not single out babies with disabilities. The UK Government has decided to ignore this recommendation.

The 2013 Parliamentary Inquiry into Abortion for Disability found the vast majority of those who gave evidence believed allowing abortion up to birth on the grounds of disability is discriminatory, contrary to the spirit of the Equality Act 2010 and that it affects wider public attitudes towards discrimination. The Inquiry recommended Parliament reviews the question of allowing abortion on the grounds of disability and should consider repealing section 1(1)(d) of the Abortion Act which allows for it to happen.

The Disability Rights Commission (now the Equality and Human Rights Commission) has said that this aspect of the Abortion Act “is offensive to many people; it reinforces negative stereotypes of disability…[and] is incompatible with valuing disability and non-disability equally”.

Polling has shown that the majority of people in England, Wales and Scotland feel that disability should not be a grounds for abortion at all, with only one in three people thinking it is acceptable to ban abortion for gender or race but allow it for disability.

We support a programme of medical reform to improve the delivery and quality of information and support provided to parents expecting a baby with Down’s syndrome

Screening for Down’s syndrome is offered to all expectant parents. The test is optional and women should be free to accept or decline the offer or opt-out at any time. However, many women often report negative experiences during screening including coercion, a lack of information and negativity about life with Down’s syndrome.

Although the purpose of screening is to provide information for expectant women, there has been concern for some time around the assumption that mothers expecting a baby with a disability will want an abortion and around the ongoing high rates of termination after a baby is found to have Down’s syndrome especially at a time when we consider ourselves to be an equal and diverse society. Sadly, the births of babies with Down’s syndrome in Europe has halved since the introduction of screening.

Thus, there is an urgency for the NHS to carry out a comprehensive assessment of the impacts of prenatal screening on the Down’s syndrome community which include the community as interested stakeholders. This would enable the NHS to determine where the problems with screening lie and enable the necessary policy changes to be implemented to address the negative outcomes of the programme.

It is important that the NHS take action to assess the understanding of disability equality among the staff who are expected to counsel and support women being offered testing, to ensure that parents are always provided with unbiased information and support.

Professionals offering screening may be the major source of information and counselling for pregnant women who are required to make informed decisions about screening, they need to be allocated enough time and the training and the guidance to help women when they find that their baby has or may have Down’s syndrome because we know that many pregnant women have little understanding about what it is to live with Down’s syndrome.

If screening for Down’s syndrome is to be offered, health services must ensure that women are able to make informed decisions around screening. The authorities need to do more to address this issue.

Equality law and guidance requires our Health Services to raise positive awareness around disability, highlighting the need for national Down’s syndrome awareness programmes to be put in place to ensure that there is no stigma attached to Down’s syndrome, mitigating the possibility of screening proliferating negative stereotypes.
When changes such as these are made, Down’s syndrome screening can be considered more ethical.

We highlight the negative impact that national screening programmes are having on increasing the number of babies that are screened out because they have Down’s syndrome.

While we do not oppose individual families making an informed choice to take up the offer of screening as a means of information and ongoing support to continue their pregnancy after finding out that their baby has or may have Down’s syndrome, we do oppose the roll-out of national screening programmes that have the effect of further reducing the number of babies born with Down’s syndrome.

Most recently this has included the introduction of the genomic Non-Invasive Prenatal Screening Test, (NIPT) which is projected to lead to a significant increase in the number of babies aborted with Down’s syndrome. ,

If more women take up the new test which is reported to be more accurate than previous tests, and if high rates of termination continue, then the number of babies with Down’s syndrome screened out before they are born will increase. 

A reduction in births caused by screening programmes will have a profound long-term effect on the population of the Down’s syndrome community. 

The harms caused by prenatal screening programmes should not outweigh any perceived benefits yet despite the valid concerns of the community of people with Down’s syndrome and their families, the UK Government has decided to roll out ‘NIPT on the National Health Service before the right reforms have been identified and put in place.

The number of babies born with Down’s syndrome has dropped by 30% in the small number of NHS hospitals that have already  introduced the new test.

The Telegraph reported that “the number of British babies born with Down’s syndrome has halved as more parents opt for a controversial blood test to identify the condition during pregnancy”. This coverage was based on recently published research by Frank Buckley, Brian Skotko and Gert de Graaf.

Ahead of NIPT being introduced to NHS hospitals, the Royal College of Obstetricians and Gynaecologists made a submission to a consultation outlining that the high cost of offering the tests could be justified by taking into account the ‘lifetime costs of caring for children and adults with Down’s syndrome’ – ie it would be more cost effective for the Government to pay for a test that would likely result in a baby with Down’s syndrome not being born than the child be born and society cover support costs for that people with Down’s syndrome.

A 2015 UN report from the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issued a stern warning about the drive to adopt NIPT in national screening programmes, “the potential ethical disadvantages of NIPT can be summarised as routinisation and institutionalisation of the choice of not giving birth to an ill or disabled child”.

We support reforms to UK legislation and policy to improve support and equality for people with Down’s syndrome and their families throughout their lives

Improved delivery of information and compassionate support for women who have given birth  to a baby with Down’s syndrome will ensure that these children are given the best start in life. 

Thankfully, people with Down’s syndrome are living longer than ever before, growing up within loving families, entitled to the same medical treatments as everyone else in society.

We know that there is still scope to reduce the number and length of hospital stays for this group through better understanding of people with Down’s syndrome and their medical issues.

Better health outcomes can be achieved by providing training and support for staff who treat people with Down’s syndrome, increasing confidence and maximising communication, to help improve outcomes.

We support the call for increased commitment to research for Down’s syndrome, leading to more specialist health screening and treatments. 

As full members of society we need to ensure that people with Down’s syndrome are also able to attend the school of their choice with opportunities later on for further education and employment, all with the necessary support to help them fulfil their potential. 

More and more people with Down’s syndrome are getting married, leaving home and living independent of their parents. With the right setting and the right support, people with Down’s syndrome can thrive as equal members of society.

As reported in The Times newspaper, a Down’s syndrome Act could help achieve better outcomes for people with Down’s syndrome and their families.

media

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It’s time our law’s caught up

with positive changes in attitudes towards people with Down’s syndrome

Heidi Crowter, a 26-year-old woman from Coventry who has Down’s syndrome, together with Máire Lea-Wilson from Brentford, West London, whose two-year-old son Aidan has Down’s syndrome, are challenging the UK Government over a disability clause in the current law which singles out babies with disabilities such as Down’s syndrome.

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