Down syndrome awareness week - A brief history

It is international Down syndrome awareness day on 21 March 2017.  To help raise awareness, we are writing a series of articles about Down syndrome and education. Children with Down syndrome were not always entitled to an education. We are looking back over the history of Down syndrome and their access to education.

We’ve come a long way in understanding the needs of children with Down syndrome.

Below is a brief history…

A timeline of educating children with Down syndrome

1866 – The Victorian physician Dr John Langdon Down identified a group of patients who shared similar physical characteristics that are now associated with Down syndrome. At the time he called the condition “Mongoloid idiocy”. It was considered a distinct type of mental disability.

1944 Education Act – The Act established eleven categories of “handicap” and offered a limited recognition that mainstream schooling could be offered to some children with additional learning difficulties. Under this Act children with Down syndrome were considered “uneducable”. Consequently, no child with Down syndrome received an education and they were commonly institutionalised from birth.

1958 – French paediatrician and geneticist Jérôme Lejeune discovered that Down syndrome was caused by an extra copy of the chromosome 21.

1965 – International experts and the People’s Republic of Mongolia requested the World Health Organisation rename the condition “Down syndrome”.

1970 Education (Handicapped Children) Act – This Act gave every child in the UK a legal right to education. Children with learning difficulties or disabilities, such as those with Down syndrome, were no longer considered to be uneducable.

1971 White Paper, Better Services for the Mentally Handicapped – Introduced segregated schooling based on IQ.  Children with IQs below 50 were labelled as educationally subnormal (severe) and sent to specialist schools. Most children with Down syndrome fell in this category and were not considered able enough to join schools catering for moderate learning difficulties.

1978 Warnock Report, ‘the Education of Handicapped Children and Young People’ – Words like “mongol” (used to describe children with Down syndrome) were removed and replaced with the term “special educational needs” (SEN). The report advocated that as many children as possible should be educated in a mainstream setting and be included in general society. This report shifted the emphasis of special educational needs provision in the direction of integration.

1981 Education Act – Local Education Authorities made provision for SEN and extended this provision to more children who were considered “handicapped”. From the introduction of this Act, children with Down syndrome started to attend mainstream schools.

1987 – Professor Sue Buckley OBE founded the Down Syndrome Educational International, an organisation that works on pioneering early intervention and education for children with Down syndrome.

1988 Education Reform Act – introduced the national curriculum and reinforced the duty to consider SEN provision.

1990 NHS and Community Care Act – entitled people to receive support they needed to live in the community and led to the closing of long-term institutions that housed one in four adults with Down syndrome.

1991 United Nations Convention on the Right of the Child – Article 23 states that the disabled child should have access to education and encouraged social integration.

1994 The Code of Practice on the Identification and Assessment of SEN (DfE) – Children were split into two categories of SEN, those who required a multi-disciplined approach and qualified for a Statement of SEN (“Statement”) and those who just received additional support at school.

2001 Special Educational Needs and Disability Act – this Act made it illegal to discriminate against children because of their disabilities in terms of admissions, education services and exclusions.

2005 Disability Equality Duty – this required schools to take a proactive approach to promoting disability equality. Primary schools were required to publish disability equality schemes.

2007 Equality and Human Rights Commission – the Commission is charged with enforcing disability laws.

2009 The Lamb Inquiry – this Inquiry highlighted some of the key failings in the current SEN provision.

2010 Equality Act – required schools and workplaces to make reasonable adjustments for those with protected characteristics, including disabilities. However, Scope found that only 20% of people with Down syndrome of working age had any job.

2014 – Statements became Educational, Health and Care Plans(“EHCP”).

Today – Many parents now feel that their child can be successfully educated in mainstream schools with additional support, at least until secondary school. With the introduction of EHCPs children are potentially able to stay in school and college until the age of 25, earning qualifications and receiving therapies and life skills to prepare them for adulthood.

Sarah Lockwood, a parent, teacher and member of Huddersfield Down Syndrome Support Group, said:

“There is an increasingly positive outlook for parents who give birth to a baby with Down syndrome – an expectation that their child will enter into adulthood with greater independence and wider possibilities than ever before.  It is crucial that educational provision keeps up with this vision”.