Written by Nicole Scholz
21 March is World Down Syndrome Day, and this year marks its tenth anniversary. Down syndrome is a genetic condition that results in physical and learning disabilities. Early therapy and social support have proven beneficial for people with Down syndrome. The EU promotes their inclusion in society through the European Disability Strategy and various Commission projects. Grants for research and other projects are provided through several funding programmes.
World Down Syndrome Day
World Down Syndrome Day (WDSD) was first marked in 2006. In December 2011, the United Nations (UN) officially designated it as a global awareness day, to be observed every year on 21 March. Down Syndrome International (DSi) runs a dedicated WDSD website to ‘create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome’. It coordinates the WDSD Global Video Event ‘Let Us In!’, the international WDSD Conference held at the UN headquarters in New York on 21 March, the LOTS OF SOCKS campaign and the WDSD Awards, which reward individuals, groups or organisations whose activities have improved the quality of life of people with Down syndrome.
What is Down syndrome?
Down syndrome is a genetic condition caused by the presence of an extra chromosome 21 in the body’s cells (it is also called ‘trisomy 21’). People with Down syndrome may have varying degrees of physical and learning disabilities. They are also at a greater risk of having other health issues, such as heart disease and problems with the eyes, intestines, thyroid and skeleton. The chance of having a baby with Down syndrome is higher for older mothers. The prevalence stands at approximately 22 per 10 000 births in Europe.
Down syndrome is not a disease and cannot be cured. Treatment focuses on early intervention to help improve skills. It comprises physical, speech-language, occupational and/or emotional and behavioural therapy. Research shows that an inclusive education is beneficial for the development of children with Down syndrome, as is the support of family and community.
EU action and funding
The main legislative basis for EU action in regard to Down syndrome is Council Directive 2000/78/EC.
The European Parliament (EP) adopted a declaration on children with Down syndrome on 12 April 2012. It called on the Commission, the Council and the Member States to contribute to the social inclusion of children with Down syndrome through awareness-raising campaigns, to promote Europe-wide research on the treatment of the condition, and to draw up a strategy for protecting the rights of children with Down syndrome in the EU. The EP also adopted a resolution on the UN Convention on the Rights of Persons with Disabilities on 24 April 2009.
European Disability Strategy, EUROCAT, Agency for Special Needs and Inclusive Education, ANED
The EU promotes the social inclusion of people with Down syndrome through the European Disability Strategy 2010-20, which aims at eliminating barriers and has eight main areas for action: accessibility, participation, equality, employment, education and training, social protection, health, and external action.
Since 1979, the European Commission has financially supported EUROCAT, the European Surveillance of Congenital Anomalies network. In terms of prevalence and social impact, Down syndrome is the most important condition which EUROCAT follows. EUROCAT also provides statistical data (2008-12) on Down syndrome, by major EU region.
The Commission also supports the European Agency for Special Needs and Inclusive Education, which facilitates the sharing of information on national initiatives, and more specifically the participation of learners with Down syndrome in the information activities organised by the agency.
Moreover, the Commission supports the Academic Network of European Disability experts (ANED) that provides analyses of national situations, policies and data. ANED also manages DOTCOM: the Disability Online Tool of the Commission, which gives an overview of the main instruments in the Member States and the EU.
R&I Framework Programmes, Health programmes, PROGRESS programme, ESF
The EU provides grants for projects and research on Down syndrome through several funding programmes. EU funding is complementary and not intended to replace the responsibilities and obligations of the national, regional or local authorities.
Seventh R&I Framework Programme (2007-13)
Between 2007 and 2013, the Commission allocated €3.8 million to support research on Down syndrome. The three-year POSEIDON project (Personalised smart environments to increase inclusion of people with Down syndrome), financed by the Seventh R&I Framework Programme, runs until November 2016.
Eighth R&I Framework Programme – ‘Horizon 2020’ (2014-20)
A call for projects for research in genetic conditions has been opened: Novel ideas for radically new technologies – Research projects – H2020-FETOPEN-2014-2015-RIA. Other funding opportunities can be found on the Horizon 2020 funding portal.
Second Health programme (2008-13)
Two projects were funded under this programme: Operating Grant No 20133307 for the activities of EUROCAT and Joint Action No 20102204 to facilitate the reduction of the public health burden of congenital anomalies (CA) by epidemiological surveillance through the EUROCAT network of population-based congenital anomaly registers.
Third Health programme (2014-20)
The budget of this programme is €449.4 million (in current prices). Funding opportunities for 2015 are not yet open.
The PROGRESS programme (2007-13)
This programme finances, among other things, projects on social inclusion, social protection and non-discrimination. Among the potential beneficiaries for projects related to Down syndrome are non-governmental organisations (NGOs), national, local and regional authorities as well as public employment services.
European Social Fund (ESF) (2014-20)
The ESF will grant some €80 billion (in current prices) in funding to train people and help them find a job, foster social inclusion, promote education and training and improve the quality of public services in the Member States. Information about ESF support in each Member State is available via an interactive map. The ESF has financed social inclusion projects such as ‘Work experience for those with special needs‘. Further examples of ESF-funded projects can be found on the ESF projects website.
Further reading and information
Down syndrome organisations in the EU
The European Down Syndrome Association (EDSA), a non-profit organisation supporting and representing people with Down syndrome across Europe and affiliated with DSi, provides a list of its member organisations in European countries.
Overview of relevant EU law and national disability benefits
ANED has published a study on the Disability Benefits and Entitlements in European Countries: Mutual Recognition and Exportability of Benefits (2010), examining the legal situation in specific countries.