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.