Walking the length of England to improve education for children with Down syndrome

Yesterday, Sir Christopher and Wendy Ball completed a remarkable walk from the south coast of England to the border with Scotland, covering over 400 miles to raise funds to improve education for children with Down syndrome.

Sir Christopher Ball and his wife Wendy yesterday reached the Solway Firth near Carlisle in North West England – the end of an amazing walk from Littlehampton in West Sussex on the South Coast. Over the past two years, walking for a few days at a time, they have covered over 400 miles, following waterways the length of the country.

Sir Christopher Ball and his wife Wendy

As they have made their way across England, Christopher has recorded their progress with a series of poems and reports online.

Sir Christopher, formerly the Warden of Keble College, Oxford, director of learning at the RSA and chancellor of the University of Derby, has served as Chairman of Down Syndrome Education International since late 2009.

Christopher and Wendy have been walking to raise funds for the charity’s vital research, resources and services that are improving education for thousands of children with Down syndrome around the world.

Please show your appreciation for their fantastic efforts by donating to their walk online.

Minister responds to UK education guidelines

Last week, the All Party Parliamentary Group on Down Syndrome (APPGDS) presented a new report on good practice in education to Edward Timpson MP, Parliamentary Under Secretary of State (Children and Families) who is responsible for special educational needs and disability at the Department for Education.

The report summarises information about the specific learning needs of children with Down syndrome, sets out principles for effective education practice, and calls on government to:

  1. Recognise the specific developmental and educational needs of children and young people with Down syndrome as a unique group
  2. Ensure effective planning and monitoring for this population of children/ young people
  3. Develop the inspection framework so that the inspection process is informed by and checks against identified good practice with pupils with SEN, and specifically Down syndrome
  4. Promote and support syndrome-specific approaches tailored to the learning profile of children and young people with Down syndrome, and endorse the principles set out in this document
  5. Develop government led, centrally produced, evidence based guidance for practitioners on Down syndrome
  6. Protect the provision of specialist Down syndrome support services
  7. Recognise and meet the need for provision of additional resourcing

You can watch the Minister’s reply here and download the report here (PDF, 1.2MB).

Walking the length of England in support of DSE

Sir Christopher Ball and his wife Wendy are making tremendous progress walking from the south coast of England to the North, raising funds for the charity along the way.

Sir Christopher Ball, the Chairman of the Board of Trustees, and his wife Wendy are walking from the south coast of England to the North, in aid of Down Syndrome Education International. They are follow a route alongside water – rivers and canals from Littlehampton on the Sussex coast to Carlisle, close to the border with Scotland.

Follow them – and Christopher’s poetry – as they wind their way north on their Walking by Water blog.

To show your support for their efforts, please donate via their JustGiving 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.

One year on in Kyiv

The Ukrainian Down Syndrome Organisation celebrates the opening of the early intervention and parent support centre in Kyiv on year ago. In just one year, over 340 families have visited for direct support and over 1,000 parents and educators around the country have benefited from better information and advice.

Until recently, almost all babies with Down syndrome born in Ukraine have been given up by their families for care in institutions where they have received few opportunities to achieve their potential to live fulfilling lives. Today, many families are choosing to look after their children with Down syndrome. However, little support is available to these families. Medical care is often inadequate, leading to unnecessary illness or impairment. There are very few opportunities for children with Down syndrome to receive effective therapy and education to help their development.

In 2010, the Ukrainian Down Syndrome Organisation began a major three-year project in partnership with Down Syndrome Education International to improve support for people with Down syndrome throughout Ukraine. The project is a corporate social responsibility initiative of EDB ErgoGroup – a leading Nordic IT company.

Since starting the project in July 2010, the Ukrainian Down Syndrome Organisation has opened a centre in Kyiv, employing specialist staff, and translated and published up-to-date information about health and medical care, early intervention and education for people with Down syndrome.

This week, the charity celebrated the anniversary of the opening of the centre – an event picked up in some of the local media:

Building a new future for Ukrainian people with Down syndrome

Last year we began a three year outreach project in Ukraine. Just one year on, the project is already making fantastic progress improving support for people with Down syndrome throughout the country – far more than we could have initially hoped for.

We estimate that there are 10,000-15,000 people with Down syndrome living throughout Ukraine, including 6,000-8,000 children

I first visited Kyiv in September 2008 at the request of (what was then) EDB Business Partner (which, following a merger, is now EDB ErgoGroup). EDB was considering options for a new corporate social responsibility project and wanted to know if we could develop a project that would deliver a marked improvement in the lives of people with Down syndrome living in Ukraine – one of several countries where the company has significant investments.

Kyiv is a former member of the Soviet Union and a country which suffered great brutality in the first half of the twentieth century – first through the two Soviet famines of 1921-22 and (the arguable genocide) of 1932-33 in which over 8 million people died, and then subsequently at the hands of German and Soviet armies during World War II (when a further 7 to 8 million people lost their lives). Following the dissolution of the Soviet Union, the legacy of state control and corruption hindered economic and political progress. Economic output fell 40% during the 1990s. The Orange Revolution of 2004 promised change and despite political turbulence, the economy started to grow again until the global financial crisis of 2008. GDP then fell 15% in 2009. Per capita GDP is currently around $3,000 (around $6,700 based on purchasing power parity) – placing Ukraine among lower middle income countries.

Discrimination against the disabled, violence against women, child abuse, child trafficking and child labour are all commonly reported problems in Ukraine. In general, public understanding of Down syndrome is poor and expectations are low. There are very few early intervention services and very limited educational opportunities for young people with Down syndrome. Doctors, psychologists and speech therapists receive little training in learning disabilities and the limited information available is often outdated. Parents of new babies therefore rarely have an accurate understanding of the condition and maternity hospitals do not encourage families to keep their children. Indeed, it is a legal requirement that doctors offer to take the baby into care when diagnosed.

Around 70% of babies born in Kyiv are taken into state-run orphanages (perhaps more elsewhere).

With very limited public services and little encouragement from professionals or officials, many families make the difficult decision to leave their child to the care of the state. Thankfully, this is starting to change, but we still estimate that around 70% of babies born in Kyiv are taken into state-run orphanages. From birth until around 4 years of age, these young children live in a “baby home”. From 4 or 5 years, they live in a home for mentally disabled children. From 21 years, people with Down syndrome live in a hospital for mentally disabled adults.

There is limited special education provision for children with Down syndrome in Ukraine. There are residential and non-residential educational institutions (internats) for specific categories of disabled children ranging from those with severe disabilities to those with mild impairments and those with emotional and behavioural problems. According to the Ministry of Health in Ukraine, there were 136,000 disabled children in Ukraine in 2004. A reported 65,000 disabled children were enrolled in over 400 institutions.

According to the Ministry of Health in Ukraine, there were 136,000 disabled children in Ukraine in 2004. A reported 65,000 disabled children were enrolled in over 400 institutions.

We calculated that some 600 babies would be expected to be born annually (though official statistics from the Ministry of Health for 2002 and 2003 only record 330 annual births). Given this, we might expect some 10,000-15,000 people with Down syndrome to be living throughout Ukraine, including 6,000-8,000 children.

With substantial difficulties facing people with Down syndrome and their families in the country, a lack of public and private resources, and turbulent political environment, it was far from clear that we would be able to deliver a plan to EDB that had a good chance of succeeding in delivering marked improvements in the lives of these children and adults and their families.

We had tracked down a group of families in Kyiv who had started a national charity to support and advocate for people with Down syndrome. They had already achieved notable success attracting media attention to the plight of people with Down syndrome, holding seminars for families and starting to provide information to parents of newly diagnosed babies.

The new centre in Kyiv

These were considerable achievements, but this was still a fledgling charity, underpinned by a small number of families with few resources. The families told me about the challenges facing them, their aspirations for their children and how they wanted to improve support for people with Down syndrome throughout the country. We set about developing a plan.

It is easy to forget how much has changed for people with Down syndrome in Western countries over the past 40 years. It may not be enough, but it is dramatic. In 1970 life expectancy for people with Down syndrome was 30 years – now (where good healthcare is provided) it is 60. In 1970, people with Down syndrome were considered uneducable. Today (with the right support), we can expect most young people with Down syndrome to achieve useful levels of literacy and numeracy skills, and to learn much from access to a broad academic curriculum. Rising numbers of people with Down syndrome are employed and living with increasing levels of independence.

Education and Healthcare Conference, Kyiv, September 2010

Social change has driven much of this change – coupled with advances in our understanding of the particular medical and developmental needs of people with Down syndrome. Scientific progress driven by clinical, developmental and educational research has driven the development of effective medical care guidelines, early intervention techniques and better teaching practices. The drive for acceptance, inclusion and the recognition of the rights of people with disabilities has helped ensure better standards of care and support are put into practice.

With this in mind, the plan we drew up had five main aims:

  • Improving information and knowledge among families, and healthcare and education professionals to underpin the provision of effective, evidence-based health, early intervention and education services. This would involve the translation, adaptation and publication of up-to-date information about healthcare, early intervention and education, and the provision of conferences and seminars for families and professionals.
  • New early education services in Kyiv

    Providing evidence-based model support services to demonstrate potential and to develop professional experience and expertise, and encourage replication across the country. This would involve the development of a centre in Kyiv hosting support groups, early education services, seminars, advice and consultation services. We would recruit and train professional staff to provide these services and subsequently support others to replicate them more widely.

  • Building expertise and capacity for service delivery and support within the Ukrainian Down syndrome organisation and across state and other nonprofit service providers to create the foundations for lasting improvements and ensure the long-term impact of the project. In addition to professional staff development, this would include helping develop the charity’s administrative, financial and fundraising functions.
  • Improving public awareness and advocating on behalf of people with Down syndrome to promote a more realistic understanding of the condition among the general public, health and education professionals and political leaders to encourage support for effective services and inclusion. This would include proactive and constructive engagement with governmental, non-governmental, professional and academic agencies, concerted PR and targeted campaigning activities.
  • Evaluating outcomes carefully to provide evidence of effectiveness and provide the justification for wider changes in public health and education provision. This would include documenting outcomes from model services, client satisfaction, family needs and researching standards in existing education and health services.
UK Ambassador to Ukraine hosts reception on World Down Syndrome Day

It was clear we could not achieve substantial change overnight and we agreed that we had to commit to a three year project to enable sufficient time to build a sustainable Ukrainian charity equipped with sufficient expertise to deliver a lasting impact.

Last year we finalised our plans and the project agreement between EDB ErgoGroup, the Ukrainian Down Syndrome Organisation and Down Syndrome Education International. The refurbishment of a building in Kyiv to house the charity commenced in the middle of the year.

To mark the start of the project and to begin to spread current information about Down syndrome, we hosted a one day conference in September that offered information about Down syndrome, effective early intervention, education and healthcare, and introduced the Ukraine Down Syndrome Project. Speakers at the conference included Professor Sue Buckley OBE from Down Syndrome Education International, and Dr Phillip Mattheis, a Developmental Paediatrician and member of the US Down Syndrome Medical Interest Group.

New family services, Kyiv, March 2011

Turnout at the conference was excellent, with over 200 parents, educators, healthcare professionals and care staff from orphanages across Ukraine attending. Representatives from the Ministry of Education and the Ministry of Health attended and the conference was reported on five Ukrainian national television channels.

In November 2010 the centre officially opened in Kyiv. In the eleven months since opening, the Ukrainian Down Syndrome Organisation has enrolled 324 families in regular services including new parent support groups, early education classes, and information seminars. In addition, information and training has been provided to hundreds of professionals through conferences, seminars and translated information resources – including the first steps in the See and Learn Language and Reading program.

Children attending a new model teaching project in Kyiv

In a nearby internat (special school), a new model teaching project has recently got underway including children with Down syndrome in an experimental evaluation (officially supported by the education authorities in Kyiv) of more flexible teaching approaches designed to meet individual needs. Legislation was passed in recent years giving families the right to choose the type of school they wish their child to be educated in. However, this has not been backed up with the necessary resources and teacher training, nor the necessary flexibility with regard the state mandated curriculum taught in Ukrainian schools. One consequence has been a rapid rise in the numbers of children with learning disabilities (including children with Down syndrome and children with autism) attending academic internats previously only educating children with milder difficulties and behaviour problems. This model project, supported by funding from the Dutch embassy, Kyiv city education department and local companies, aims to develop curriculum adaptations and individualised teaching approaches suitable for replication and demonstrate how they can improve outcomes.

Addressing guests at a reception hosted by the UK Ambassador to Ukraine on World Down Syndrome Day 2011

On World Down Syndrome Day 2011, Her Majesty’s Ambassador to Ukraine, Leigh Turner, very kindly hosted a reception at his official residence to mark the occasion and celebrate the achievements of the Ukraine Down Syndrome Project. The event was attended by ambassadors, government officials and business leaders from Kyiv and was covered by the major Ukrainian TV channels.

Over 1,000 people throughout Ukraine have already benefited directly from the project, which has attracted the support of the Ukrainian Ministry of Education, Kyiv City education and children’s services. Across Kyiv, some children with Down syndrome are starting to be accepted in mainstream kindergartens. The project has helped to establish parent support groups around the country, and encouraged the formation of a Ukrainian Down Syndrome Medical Interest Group.

Building on the successes of our first year, we are now reaching out to support change across Ukraine and to improve support for the many children with Down syndrome living in baby houses and internats.

Press conference launching Ukrainian editions of See and Learn Language and Reading, October 2011

DSE has supported the Ukrainian Down Syndrome Organisation with information resources for translation, staff training and advice, contributing to seminars, conferences and advice sessions, and assistance with fundraising and business planning.

That said, the success of the project to date has largely been down to the excellent work of the families and staff at the Ukrainian Down Syndrome Organisation. Importantly, this success has been underpinned not just by cash funding from EDB ErgoGroup, but also the expertise and voluntary assistance provided by the company and, in particular, through Infopulse – an EDB ErgoGroup subsidiary headquartered in Kyiv.

We are exploring opportunities to replicate this success in other countries (where there is no shortage of desperate need).

How to help

If you would like to support our efforts to improve support for young people with Down syndrome in low and middle income countries, please donate to our Global Education Fund either through Down Syndrome Education International (a registered UK charity) or Down Syndrome Education USA (a 501(c)(3) US nonprofit). You can also choose to specify you’re your donation supports work in Ukraine:

You may also be able to help by putting us in touch with companies with corporate social responsibility or giving programs with interests in low and middle income countries.