Learning Disability

A very brief guide to learning disability

1. People with a learning disability are a very diverse group

A person with a learning disability is someone who, from childhood, has had difficulty in learning and processing information so that it significantly reduces his or her ability to carry out the full range of everyday tasks. The term ‘learning disability’ is only used in the UK – other countries use ‘intellectual disability’ or ‘mental retardation’.

People with a learning disability are a very diverse group with a wide range of abilities. A person with a ‘mild learning disability’ may live in their own house (or in a house shared with other people), work, and raise children. They will probably need advice and support in these tasks from time to time. See this video from BILD: http://www.youtube.com/watch?v=NhG2te6c-aA. By contrast, someone with a ‘severe or profound learning disability’ will probably be unable to use speech, may be incontinent and physically-disabled, and need help with simple tasks like eating and drinking. This NHS video includes descriptions by parents of people with a ‘profound and multiple learning disability’:https://www.youtube.com/watch?v=0MAsTRaR404.

Learning disability is assessed by a combination of intelligence tests and measures of ‘adaptive behaviour’ (ie a person’s ability to carry out everyday tasks). In the UK, the threshold for learning disability is usually set at an IQ of below 70. But people with a learning disability do not fall into a few discrete groups, and their IQ scores may not reflect how well they cope with life. Nor are their abilities fixed for ever. People with a learning disability are able to carry on learning new skills throughout adulthood.

2. Communication is the key to effective support

Many people with a learning disability experience problems in communicating. They may have limited vocabulary and understanding of grammar, problems in articulating words, or no understanding of speech at all. But almost all are capable of communicating. Those with limited speech are usually able to use visual signs and symbols, while even those with the most profound learning disability are able to express pleasure and distress. Even when people are unable to express speech, they may be able to understand some words. The main problem for many people with a learning disability is that those they wish to communicate with often lack the time and commitment to understand their particular style of communication.

Without being able to communicate effectively, people with a learning disability are less able to make choices, and may respond by becoming frustrated or depressed. See this video on ‘challenging behaviour’: http://www.youtube.com/watch?v=tQTx26ELkSs. This means that effective communication is the core task for support services, requiring staff who are able to develop a one-to-one relationship with an individual person with a learning disability, and thereby learn each others’ way of communicating.

3. Many people with a learning disability have unmet health needs

Most people with a learning disability have chronic disorders, illnesses or disabilities in addition to the learning disability itself. They are at much greater risk of injuries than the general population because they often have less capacity to assess risk, and have high rates of epilepsy, sensory impairments and mobility problems. They are four times more likely than the rest of us to suffer from anxiety and depression, which may result from the stress they experience in coping with dependence on others, unemployment and lack of friends. They may also lead sedentary lifestyles, and people with a learning disability have rates of obesity double that of the rest of the population.

Many people with a learning disability have problems accessing appropriate medical care. In some cases, families and support workers may mis-interpret expressions of pain as ‘challenging behaviour’, or may regard illnesses as an untreatable aspect of the learning disability. But a more common problem is that many healthcare workers have problems communicating with patients with a learning disability, and are concerned about their capacity to consent to intrusive examinations or routine health screenings. It is therefore essential that healthcare workers are trained in working with people with a learning disability, or can call on people with this expertise, whether in primary care or in hospitals.

As a result of all these factors, people with a learning disability have, on average, shorter lives than the rest of the population. The average age at death for men is 65 years, and 63 years for women. This is 13 years less than the life-expectancy for men and 20 years less than the life-expectancy for women in the general population. For people with profound learning disability, the median age at death is 46 years.

4. People with a learning disability have a right to live how and where they wish

Just like the rest of the population, adults with a learning disability live in many different types of accommodation. The largest group live with their family, while a similar number live in homes they either rent or own, often shared with other people with a learning disability. These often depend on varying levels of assistance from support workers. There are also substantial numbers in residential care homes, and small numbers in nursing homes and residential hospitals (usually provided by the independent sector). Small numbers also live in ‘adult placements’ with families paid to provide care, or in village communities such as those organised by Camphill and L’Arche.

The gradual expansion of personal budgets has given people with a learning disability more choice about where they can live, but some local authorities attempt to enforce a particular kind of accommodation (usually single-person flats) on people with a learning disability as being more ‘normal’. In doing so, they are contravening the United Nations Convention on the Rights of People with Disabilities, which specifies that disabled people are entitled to choose their own accommodation and ‘should not be obliged to live in a particular living arrangement’.

Finding out more

If you are searching the Internet, bear in mind that most academic papers use ‘intellectual disability’, and that the term ‘learning disability’ in the USA is used to designate dyslexia and other specific learning difficulties. Some key texts include:

http://www.improvinghealthandlives.org.uk/profiles/. This gives a profile of the learning disability population in each area of England.

http://www.improvinghealthandlives.org.uk/projects/particularhealthproblems. This website includes reports on the health inequalities experienced by people with a learning disability.

DR Stuart Cumella
On behalf of learningdisability.co.uk Copyright 2014