Down’s Syndrome Overview

Down’s syndrome is a condition caused by an extra chromosome which occurs by chance in a foetus. It affects cognitive function and so people with Down’s syndrome have some learning disabilities. Some people with Down’s syndrome will be able to live independent lives and hold down jobs, but not all. There are around 40,000 people in the UK with Down’s syndrome.

What are the signs of Down’s syndrome?

People with Down’s syndrome are all individuals, with their individual personalities, but they may share coping strategies for their condition. For example, many people use routine as a means of maintaining control over their lives. Some use self-talk to help them make sense of the world, which, for people with learning disabilities, can be a disorienting place.

Physical features of Down’s syndrome might include:

  • Poor muscle tone
  • Tongue that sticks out of the mouth
  • Shorter stature and a short neck
  • Almond-shaped eyes
  • Small hands, feet and ears

In the case of Mosaic Down’s syndrome, instead of the person having three instead of the usual two copies of the 21st chromosome in all cells in their body, this only occurs in some cells. For this reason, they may have only some of the distinguishing physical features for the condition.

How does Down’s syndrome get diagnosed and treated?

Down’s syndrome is a lifelong condition but the effects of it can be improved with intervention. For example, speech, occupational and physical therapy to allow the person to achieve their full potential.

Different people will require different levels of care as they get older, such as carers in the home to help with day-to-day tasks, but not everyone with Down’s syndrome requires this.

Down’s syndrome can be diagnosed in two ways. The first is with a screening test during pregnancy, which calculates a rough percentage chance of the unborn baby having Down’s syndrome. This involves a blood test to detect certain indicators in the mother’s blood, as well as an ultrasound to look for the physical features of Down’s syndrome in the foetus.

The diagnostic test is often used to confirm a screening test, as it carries some risk for the mother and baby. It can be carried out by taking a sample from either the placenta, the amniotic sac or the umbilical cord.

There are a few ways to determine whether an employee with Down’s syndrome might require reasonable adjustments:

Questions regarding the nature of their Down’s syndrome and what extra support they may need can be broached sensitively. For example:

  • Have they required adjustments in the past? It may be easy to assume that someone with Down’s syndrome will require a certain level of support in the workplace, but each person has different tasks they may struggle with, just like an able-bodied employee.
  • Encouraging the employee to express their strengths and interests and which tasks they might enjoy doing is a positive way of adapting to their needs and empowering them, in spite of their Down’s syndrome.

What reasonable adjustments are possible for employees with Down’s syndrome?

Employers have a legal duty to make reasonable adjustments for employees with Down’s syndrome if they know, are aware of, or could ‘reasonably be expected to know’ that the employee has Down’s syndrome. Most employees will tell their employer what reasonable adjustments they need. They often involve simple changes in the way an employer might usually do things.

If the employee does not disclose a health issue or disability which may affect their performance upfront, an employer should broach the subject sensitively if they suspect that there may be a disability behind the employee’s reduced performance. Reasonable adjustments can then be made in accordance with the employee’s needs, including, in the case of Down’s syndrome:

  • Written instructions to accommodate difficulties the person may have with receiving verbal/audial instructions. Some people with Down’s syndrome have hearing difficulties.
  • A ‘show and tell’ method of demonstrating tasks to allow the employee to learn by watching. They may find it preferable to work alongside a mentor while they gain confidence in their work.
  • Breaking tasks down into smaller parts, as people with Down’s syndrome sometimes struggle to perform more outwardly complex tasks.
  • Assistive technology, such as to make the use of a computer easier if the person with Down’s syndrome also has eye or ear problems, as is sometimes the case for people with the condition.
  • Raising awareness so that colleagues understand the employee’s Down’s syndrome and can help ensure the employee feels comfortable at work. This might involve learning more about the condition to gain a better understanding of what the employee might be facing day-to-day.

Down’s Syndrome Signposting

Down’s syndrome Research Foundation UK– charity which helps fund medical research, promote understanding of the condition and which advocates for the rights of people with Down’s syndrome (01892 71 1121).

Mencap – charity which works to improve the lives of people with learning disabilities (not specific to Down’s syndrome). They work on improving the public’s attitude towards people with learning disabilities, as well as the understanding of health professionals and employers (0808 808 1111).

Down’s syndrome Association – the only UK charity dealing with all aspects of the condition, delivering training and information on education and health and social care, as well as matching employers with jobseekers via the WorkFit programme (0333 1212 300).

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