Pushing ahead with inclusion

Trisomy 21 Pushing ahead with inclusion

The 21 March is World Down Syndrome Day. Since 2006 this day has aimed to draw attention to the special situation of people with three copies of chromosome 21.

A little boy with Down syndrome enjoys using finger paint

People with Down syndrome belong at the heart of society

Photo: picture alliance / ZB

They are held to be loving and friendly, are often open and affectionate. Every three minutes a person with trisomy 21, or Down syndrome, is born. About five million people around the world live with this genetic defect – in Germany the figure is 50,000.

Action day for Down syndrome

The date, 21 March, was chosen specially. People with Down syndrome have three copies of chromosome 21 rather then two. This can affect the lives of those affected to very different degrees. Even with mental and physical impairments, people with Down syndrome can take part in everyday life, and would like to do so.

"People with Down syndrome are faced with prejudices every day. They do not suffer as a result of Down syndrome, they suffer exclusion and marginalisation in our societies. These people belong at the heart of society," stressed Hubert Hüppe, former Federal Government Commissioner for Matters relating to Disabled Persons. The world is raising awareness. Since 2012 the action day has been officially recognised by the United Nations.

Life expectation rises significantly

Trisomy 21 often comes hand in hand with health problems. Almost one in three people with this genetic defect has a heart defect. But, the health situation and health care available to this group is improving all the time. Life expectancy has risen significantly over the last thirty years.

Three quarters of people with Down syndrome used to die before reaching puberty, and only one in ten lived to be older than 25. Today, life expectancy for women is 59 and for men 61. Ten per cent of people with Down syndrome actually live to the age of 70.

Fostering inclusion further

Inclusion in the school and working world is a central political objective. The mental capacities of children with Down syndrome vary very widely: they go from serious mental disability to almost average intelligence. 30 per cent of people with this genetic defect do obtain a school leaving certificate.

The German government aims to push ahead with the whole issue of inclusion. The National Action Plan provides for all children, with and without disabilities, attending nurseries and schools together. Integration in the labour market and the transition from special workshops for disabled persons to regular employment is to be stepped up.

Discussion within society

Many prospective parents decide against a child with Down syndrome. Since 2012 simpler medical tests have made it possible to identify the genetic defect.

Parents are unsure as to whether they will be able to cope with the challenges ahead. They realise that caring for a disabled child is a huge lifelong responsibility. It is frequently the potential problems and burdens that are discussed. All too easily the joy that the child can bring is pushed into the background. That is why action groups and initiatives use the World Down Syndrome Day to encourage discussion within society. They are pushing to foster acceptance for people with Down syndrome.