Selective terminations of babies with Down syndrome have not risen by 35% in three years

piece in the UK Mail on Sunday claims Department of Health statistics show “women choosing to abort babies with Down’s syndrome and other serious disabilities soars 34% in three years” and that “the biggest proportion was linked to Down’s syndrome, with 693 terminations last year compared with 512 in 2011”. Data collected by the National Down Syndrome Cytogenetic Register (NDSCR) shows this is not the case.

UPDATE (15 June): Amended to correct dates. Mail article refers to 2014 Department of Health data, while NDSCR has only reported to 2013. It remains the case that (a) NDSCR data reports 2% drop between 2011 and 2013 – which is not consistent with 35% rise over 3 years, and (b) DoH abortion statistics since 2011 consistently differ from NDSCR data. More here.

There is a remarkable headline in The Mail on Sunday today claiming terminations of babies with Down syndrome have “soared 34% in three years”. It quotes “an investigation into figures published by the Department of Health”.

In England and Wales, there is a national registry collecting data on prenatal and postnatal diagnoses. Their data (collected since 1989) is widely cited in academic studies and is 94% complete. I’m not sure where the Mail on Sunday (and perhaps more worryingly, the Department of Health) are sourcing their information, but it is way off.

The article claims there were 512 terminations of pregnancies diagnosed with Down syndrome in 2011 and 693 in 2014 – a rise of 181 (35%).

NDSCR reports 1,134 terminations of pregnancies diagnosed with Down syndrome in 2011 and 1,018 in 2013 – a fall of 2% over two years. NDSCR has not yet reported on 2014.

This graph shows the number of terminations of pregnancies diagnosed with Down syndrome (columns) and terminations as a percentage of all diagnosed cases (prenatal and postnatal).

down-syndrome-terminations-england-wales-2004-2013

(Note: The % terminated statistic is not the reduction rate – i.e. the rate at which live births are reduced as a result of screening and selective terminations. This is because approximately 23% of the terminated pregnancies would not have resulted in a live birth.)

UK Communication Trust lists RLI in What Works database

The Communication Trust – a coalition of nearly 50 voluntary and community organisations with expertise in speech, language and communication – has recently listed DSE’s new reading and language intervention in its What Works database of evidenced interventions.

RLI HandbookThe Communication Trust in the UK is a coalition of nearly 50 voluntary and community organisations. Working with the Better Communication Research Programme they have developed a database of evidenced interventions to support children’s speech, language and communication – the What Works database.

The Communication Trust’s What Works database includes over 60 interventions, assessed for inclusion in the database by independent experts. The What Works database is endorsed by the Royal College of Speech and Language Therapists. The entry for RLI in the What Works database (registration required) observes:

“A key feature of RLI is that it is designed to be suitable for children across a wide ability range and content is adapted for each individual child, with assessment and daily record keeping built into the delivery of the programme. The Language Strand can be used for children with language ages from 2 years and the Reading Strand for beginning readers to a word reading age of 8 years. The RCT data supports starting reading instruction for children with Down syndrome at 5 years of age as younger children in the study tended to make more progress…

“RLI has a moderate evidence level. Within the evidence there are examples of significantly positive outcomes for children with Down syndrome, all of whom have language difficulties, though children continue to need additional support.”

(By the criteria applied, a “strong” level of evidence would require multiple trials and a systematic review – we are going to have to wait a while for that!)

It is great to see RLI – and the evidence underpinning it – assessed, recognised and listed here to bring it to the attention of Speech and Language Therapists and schools looking for interventions and teaching approaches with good evidence supporting their use.

DSE’s reading and language intervention (RLI) was evaluated in a landmark randomised controlled trial involving 57 children with Down syndrome living in two areas of the UK. It is now being used in hundreds of schools throughout the UK and in the US to provide highly structured, individualised teaching for children with Down syndrome. DSE is continuing to develop support networks for the new intervention, including accredited trainers in both the UK and the US, and continuing to evaluate and develop the teaching programme.

Supporting families and educators across the US

DSE is continuing to reach families and educators across the US, improving early intervention and education for many thousands of children.

Professor Sue Buckley and Becky Baxter have been in the US for a couple of weeks, presenting to packed conferences – first in Kansas City, hosted by the Down Syndrome Guild of Kansas City and now in Irvine, hosted by the Down Syndrome Association of Orange County, the Down Syndrome Foundation of Orange County and the University of Irvine School of Education. Over 500 families and educators attended the Kansas City conference and over 300 are attending in Irvine today.

Irvine Down Syndrome Education Conference 2014

It is just over four years since we last presented a conference in Southern California – not long after we established Down Syndrome Education USA. In this short time, we have supported many thousands of families and educators across North America through conferences, specialist resources and research collaborations in the US. We are continuing to develop resources, including new See and Learn kits and apps, and to support the rollout of our new reading and language intervention (RLI) in the US.

We will be presenting at the Down Syndrome Affiliates in Action  conference in Washington DC at the end of February and are presenting an education conference in Covington, LO, in September. We are training educators across Texas via videoconferences and working with Hoffman La-Roche to support investigator training in the US for their forthcoming trial of RG1662 with adolescents and adults with Down syndrome.

We work closely with our partners at the Down Syndrome Foundation of Orange County who are busy expanding the Learning Program, providing evidence-based educational support to families in southern California and around the country through their many partners.

Together, we are improving early intervention and education of many thousands of children, but there is still so much to do. To support our work in the US, please consider donating to Down Syndrome Education USA. Your support is vital.

If you are interested in hosting a DSE education conference or any other aspect of our work in the US, please get in touch.

New reading and language intervention (RLI)

Our new reading and language intervention will be shipping in a few weeks and we are now accepting pre-publication orders for the teacher’s handbook.

DSE’s Reading and Language Intervention for Children with Down Syndrome (RLI) teaches language and literacy skills following evidence-based principles adapted to meet the specific learning needs of children with Down syndrome aged 5 to 11 years.

RLI was evaluated in a randomised controlled trial in the UK. The study was funded by the UK Big Lottery Fund and conducted by researchers at Down Syndrome Education International and at The Centre for Reading and Language at the University of York. RLI builds on earlier work on reading and language interventions at the University of York, adapting teaching techniques to meet the learning profile of children with Down syndrome. The primary findings of the trial were reported in a paper published in the Journal of Child Psychology and Psychiatry.

Further information online

In addition to the scientific paper, we have published detailed information about the study, our findings and our recommendations online.

Pre-publication orders

We are accepting pre-publication orders in the UK and will begin accepting orders in the US shortly (as soon as we are confident about the timing of getting stock to the California office).

RLI email list

We have launched an email discussion list for parents and educators using RLI or interested in learning more about it.

To subscribe to the DS-RLI discussion list, please complete this online form or email listserv@listserv.down-syndrome.net with “subscribe DS-RLI” in the body of the message (without quotation marks).

Online information events

We also are hosting a series of online information events explaining what RLI is, what it offers, who it may be suitable for and how it was evaluated. To find out more about the events and available dates and times, and to book, please visit the event page.

Restructuring to better deliver new research and services

DSE has recently moved to new offices in the UK, and will be closing The Sarah Duffen Centre in Portsmouth, southern England, after 21 years. The office move is part of a restructuring that will leave DSE better positioned to deliver the new research, publications and services needed to further improve education for children with Down syndrome everywhere.

The office move is part of a restructuring designed to reduce our overheads and focus our limited resources on the new research, publications and services that will have the widest impact for children with Down syndrome and their families

Since our first research began in 1980, education has been transformed for many children in many countries

This study demonstrates the impact of educational research: better cognitive skills and educational achievements that help people with Down syndrome live richer, more fulfilling and more independent lives

High quality evidence is essential to encourage good practice and high quality services: when there is good evidence that something works, therapists, teachers and policy makers will adopt it”

We have several candidate interventions that we believe stand and excellent chance of delivering further substantial gains for young people with Down syndrome




Strategically, we need to be ready to assemble the best teams in multiple locations when and where we can secure the funding necessary to conduct these important studies – we no longer require a single base for the majority of our research

It matters most that the study is conducted somewhere – not where it is takes place: a study in one country will benefit children with Down syndrome in many others

With many people with Down syndrome now living twice as long than they were 40 years ago, it is vital that we do everything we can to give all children with Down syndrome every opportunity to achieve their personal potential and equip them with the skills to live more independent and fulfilling lives.”
Educational research has proven its potential. It has helped drive the changes in services and support that have transformed the lives of people with Down syndrome in many countries over the past 30 years.”

Down Syndrome Education International and Down Syndrome Education Enterprises have recently moved to new offices in the UK. The office move is part of a restructuring designed to reduce our overheads and focus our limited resources on the new research, publications and services that will have the widest impact for children with Down syndrome and their families. We have relocated to smaller and more cost-effective offices in the north of England and will be closing The Sarah Duffen Centre in mid-June.

Over the past year we have taken difficult decisions not to continue some services, including those of particular benefit to families living near to The Sarah Duffen Centre in Portsmouth, and to scale other services back. While some of these decisions were prompted by the challenging funding environment we face today, all of them are aligned with a strategy designed to ensure that Down Syndrome Education International does more for children with Down syndrome everywhere, and does it more effectively than ever before.

Down Syndrome Education International was founded to support scientific research and to ensure that the benefits of this research reached children with Down syndrome. Since our first research began in 1980, education has been transformed for many children in many countries (though certainly not all children).

Our understanding of the children’s developmental delays and intellectual disabilities has advanced significantly over the past three decades. This knowledge is now informing better support and helping many children with Down syndrome to develop better language skills and clearer speech, learn to read and count, and access a rich and varied curriculum at school.

Today, scientists understand enough to design interventions that target the children’s specific difficulties. In recent years, we have begun to develop and document these interventions, and subject them to rigorous evaluation studies.

Working with colleagues at the Centre for Reading and Language at the University of York, UK, we have recently completed the first major randomized controlled trial of a teaching intervention – funded by the UK Big Lottery Fund. This landmark multi-centre study of a programme designed to improve the language and reading skills of children with Down syndrome offers the best evidence to date that targeted teaching interventions do make marked differences to rates of progress.

In the UK alone, this intervention has the potential to improve outcomes for over 7,000 children with Down syndrome. In the USA, Canada, Ireland, Australia and New Zealand there are a further 70,000 children who could develop better language and reading skills as a result of this study. Translations and adaptations could eventually bring the benefits of this research to around 1 million children with Down syndrome worldwide.

This study demonstrates the impact of educational research: demonstrably better outcomes today and in the future – better cognitive skills and educational achievements that help people with Down syndrome live richer, more fulfilling and more independent lives.

Ensuring effective and efficient support and services

Children with Down syndrome benefit from targeted early intervention and teaching techniques that recognise their particular learning needs. Yet, too often, the support and services that they receive are not as good as they could be.

High quality evidence is essential to encourage good practice and high quality services: when there is good evidence that something works, therapists, teachers and policy makers will adopt it. At the same time, interventions must be practical – they must work in the real world where families and educators face time and resource constraints.

This is why we are focusing more of our attention and resources on the development and evaluation of teaching techniques and therapies that are easy to implement as well as being effective.

As expenditure on public services in many countries remains under pressure, good evidence will become ever more important to justify the value and efficiency of specific services. If we do not continue to advance our understanding of the children’s needs and clearly demonstrate the benefits of particular therapies and teaching approaches, we will not be able to defend the services that the children depend on.

What we are working on now

Ensuring that the new reading and language intervention helps as many children as quickly as possible is our top priority at the moment. We are currently finalising the handbook and DVD which will be published, along with an accompanying web site and the launch of new training services in the coming months.

We are also writing up our findings from other recent studies: a controlled trial of computer-based adaptive memory training, early phonics teaching, the emergence of autism and autism-like behaviours in young children with Down syndrome, the first study of morphological skills among children with Down syndrome (their understanding of the component parts of words), a pilot of an intervention targeting blending skills (the ability to blend letter sounds and identify the word when reading), and a case study of exceptional bilingual skills. In addition, with colleagues at the University of Leeds, UK, we are piloting a reading comprehension intervention that we hope will prove worthy of a larger trial.

Dr Kelly Burgoyne and Professor Sue Buckley recently presented some of our findings from these studies at the 2012 Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities. Stephanie Bennett also recently presented our memory training study at the annual Cogmed Conference.

We are also expanding our See and Learn range of practical teaching resources and guidance for preschool children with Down syndrome – adding further steps to the See and Learn Language and Reading and See and Learn Speech programmes, and publishing the first steps in the See and Learn Numbers and See and Learn Memory programmes. These resources are already helping many thousands of young children with Down syndrome develop key skills in their early years, laying a strong foundation for continuing learning and development.

We are also working on the detailed plans and proposals required to secure the funding necessary to conduct rigorous intervention trials. We have several candidate interventions, each of which we believe stands an excellent chance of delivering substantial gains for young people with Down syndrome. These practical interventions target language development, speech clarity, memory function, and reading and literacy skills.

Given the necessary funding, each of these studies could be informing better services for tens of thousands of children with Down syndrome within 18 to 36 months.

Collaborating with colleagues in many countries

Our reading and language intervention trial was conducted in partnership with colleagues at the University of York in two parts of the UK and involved nearly 60 schools. As research increasingly leads to trials of specific interventions, collaborative multi-centre studies will become ever more important. Depending on the specific interventions, different research teams will be best suited to each study.

Interventions should also be developed and trialled in typical environments – such as publicly-funded and nonprofit-funded early years, speech therapy and education services, and ordinary family homes. In the past, we have undertaken many studies with children utilising the services that we provided to families and schools near to The Sarah Duffen Centre. This is one of the reasons we supported these local services. But these services – supported by expert researchers and specialist practitioners – are not the norm for many children and families, and are therefore unsuitable as a backdrop for larger intervention studies. Moreover, multi-centre studies involving more children in different areas (and countries) are more convincing than smaller, single-location studies.

Strategically, therefore, we need to be ready to assemble the best teams in multiple locations when and where we can secure the funding necessary to conduct these important studies. We no longer require a single base for the majority of our research – part of our thinking pointing to a smaller UK head office.

Today, together with Down Syndrome Education USA, we are collaborating with researchers on ongoing and future studies at several UK and US universities. With spending cuts hitting the UK Research Councils and a bleak outlook elsewhere in Europe, we are increasingly looking to US government funders (who spend over $20 million annually on Down syndrome research) to support the larger studies needed to bring widespread improvements in early intervention and education for children with Down syndrome.

We expect to start a pilot evaluation of the new reading and language intervention adapted for use in a variety of school settings in the US in the coming months.

Of course, with most of our research studies, it matters most that the study is conducted somewhere – rather than where it takes place. Most of the interventions that we believe offer the most promise should be readily transferable between countries and education systems. A study in one country, therefore, will benefit children with Down syndrome in many others.

Economies of scale, outsourcing and reduced overheads

Our publishing activities have also outgrown in-house facilities. Demand for our publications – in particular, the popularity of the See and Learn resources – coupled with our expanding activities in North America, have made outsourcing our production work a more economic option. This, too, prompted us to reconsider our property requirements.

Our move to new premises will reduce our UK property overheads by more than 50% (over £30,000 – $50,000 or €38,000) annually – savings that can support new research and development.

With more of our work involving collaborative networks and outsourced suppliers, and much of our communications increasingly relying on the Internet, we have been able to take advantage of lower-cost, rural offices that are well connected both in terms of telecommunications and transport links.

The importance of continuing educational research

With many people with Down syndrome now living twice as long than they were 40 years ago, it is vital that we do everything we can to give all children with Down syndrome every opportunity to achieve their personal potential and equip them with the skills to live more independent and fulfilling lives.

Educational research has proven its potential. It has helped drive the changes in services and support that have transformed the lives of people with Down syndrome in many countries over the past 30 years. It is the only research that has delivered effective interventions shown to improve cognition and learning.

Why your help is crucial

Some research studies can attract the support of institutional funders – but not all, and not enough to deliver rapid improvements in support for young people with Down syndrome. This is why we rely on the support of private donors around the world. Without the support of families, and local and national nonprofits, we could not maintain our ongoing research programmes – programmes that offer the best chance of continued advances in the lives of people with Down syndrome today and tomorrow.

Down Syndrome Education International and Down Syndrome Education USA are in the best position to realise the potential of educational research for children with Down syndrome worldwide. No other organisation focuses on developmental and educational research and global services and dissemination for children with Down syndrome.

We have unique expertise and a distinguished track record of achievement over three decades. We have delivered the first large scale intervention trials showing effective ways to improve cognition and learning.

We have several promising candidate interventions ready for trials – interventions that could bring about marked improvements in language development, speech clarity, reading comprehension, memory function and strengthening early problem solving skills. Any one of these could offer huge benefits for many thousands of young people with Down syndrome within 18 to 36 months. We believe that each of them has an excellent chance of being proved successful.

You can help ensure that these studies take place and that they benefit all children with Down syndrome.

You can donate simply, securely and swiftly online – and tax efficiently in the UK and the US:

Thank you for your continued support.

Living with Down syndrome – views of siblings, parents and people with Down syndrome

An interesting series of articles has recently been published online ahead of publication in the American Journal of Medical Genetics. By Brian Skotko, Susan Levine and Richard Goldstein, these papers present studies surveying siblings, parents and people with Down syndrome themselves.

The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also
included some open-ended questions.

Views of parents or guardians

The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent, finding:

  • 99% of parent/guardians said they loved their child with Down syndrome
  • 79% felt their outlook on life was more positive because of their child
  • 5% felt embarrassed by their child
  • 4% regretted having their child

(Having a son or daughter with Down syndrome: Perspectives from mothers and fathers – doi:10.1002/ajmg.a.34293)

Views of brothers and sisters

The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent).

Of the siblings age 12 and older:

  • 94 percent expressed feelings of pride about their sibling
  • 7 percent felt embarrassed by their sibling
  • 4 percent would “trade their sibling in” for another
  • 88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

  • 97% said they loved their sibling
  • 90% felt their friends are comfortable around their sibling

(Having a brother or sister with Down syndrome: Perspectives from siblings – doi:10.1002/ajmg.a.34228)

Views of people with Down syndrome

The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:

  • 99% said they were happy with their lives
  • 97% liked who they are
  • 96% liked how they look
  • 86% indicated they could make friends easily
  • 4% expressed sadness about their life

(Self-perceptions from people with Down syndrome – doi:10.1002/ajmg.a.34235)

The full papers are freely available online.