Learning disabilities

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   EQUALITY IMPACT ASSESSMENT

Learning Disability Fact sheet and FAQ’s




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Factsheet – learning disabilities

Summary

      Learning disability is a label which is convenient for certain purposes,
       but people with learning disabilities are always people first.
      Different ways of defining and classifying learning disability are used,
       but all are open to some interpretation.
      There are few official statistics for numbers of people with a learning
       disability, and our knowledge is based on studies of prevalence.
      The causes of learning disabilities are not fully classified, but are
       mainly environmental or genetic factors, or chromosomal
       abnormalities.
      Support for people with learning disabilities has moved away from the
       medical model to a social model based on inclusion and integration.

Terminology
The term learning disability is a label. It is convenient in discussion and for
planning services. But people who carry that label wear many others, such as
friend, neighbour, relative, employee, colleague, fellow citizen. A label
describes one aspect of a person, but does not capture the whole person.

Many people with learning disabilities prefer the term learning difficulties. This
is the wording used by People First, an international advocacy organisation.
In the UK, the Warnock Committee has suggested that learning difficulties
should be used to refer to specific problems with learning in children that
might arise as a result of issues such as medical problems, emotional
problems, and language impairments.

Learning disabilities can be a useful term in that it indicates an overall
impairment of intellect and function.

Alternative expressions are also used, for example developmental disabilities
and intellectual disabilities. There is at present no clear consensus. It is
however widely accepted that whatever terms are used they should be clear,
inclusive, and positive.

Definitions
The World Health Organisation defines learning disabilities as:

        “a state of arrested or incomplete development of mind”.

Learning disability is a diagnosis, but it is not a disease, nor is it a physical or
mental illness. Unlike the latter, so far as we know it is not treatable.




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Internationally three criteria are regarded as requiring to be met before
learning disabilities can be identified:

          Intellectual impairment
          Social or adaptive dysfunction
          Early onset

Intellectual impairment
IQ is one way of classifying learning disability:
        50-70              mild learning disability
        35-50              moderate learning disability
        20-35              severe learning disability
        below 20 profound learning disability

However, there are problems with using IQ alone. Measurements can vary
during a person’s growth and development. Also, many of us have individual
strengths and abilities which do not show up well in IQ tests. It is important to
take into account as well the degree of social functioning and adaptation.

Social or adaptive dysfunction
Measuring the degree of impairment of social functioning can be difficult, too.
Clearly some social impairments may be life threatening for the person, for
example poor skills in eating and drinking, and in keeping warm and safe.
Others, such as communication and social abilities, may be important to the
individual's functioning in modern society.

Also relevant are the extent of difficulties with understanding, learning and
remembering new things, and in generalising any learning to new situations.
Assessments of functioning should take into account the context within which
the person is living, including personal and family circumstances, age, gender,
culture and religion.

Early onset
The third criterion is that these impairments can be identified in the
developmental period of life. They are present from childhood, not acquired
later as a result of an accident, adult disease or illness, or dementia.


Other definitions
Within mental health legislation, the criminal justice system, and in relation to
social security benefits, other terms and criteria may be used. It is important
to recognise that these exist for specific legal purposes. This means that
someone who fits the definition for one piece of legislation may not be
covered by another.



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Classifications
All levels of learning disability are points on a spectrum, and there are no
clear dividing lines between them, or between people with mild learning
disabilities and the general population. Some individuals with mild learning
disabilities may even not be diagnosed because they function and adapt well
socially. Most can communicate using spoken language, have reasonable
skills, and given the chance can manage well with lower level but appropriate
support. People with moderate to profound learning disabilities need a good
deal more care and support. This frequently includes special help with
communication, a higher degree of risk assessment and protection, and more
physical help with mobility, continence, and eating.

Numbers
Just as there is no consensus on terminology, there are no official statistics
that tell us precisely how many people there are with learning disabilities in
the UK. The information we have comes from a number of population studies
which have focused on measuring prevalence rates. On a statistical basis
2.5% of the population should have learning disabilities. In fact, prevalence
seems to be lower at about 1-2%, giving a total of between 602,000 and
1,204,000 in a UK population of 60.2 million. Partly this is because mortality
is higher among people with more severe forms of learning disability than in
the general population. Also in part it is due to not all cases of mild learning
disabilities being identified. We can be more accurate about the numbers of
people with moderate to profound learning disabilities because they almost all
use services of some kind. They are thought to represent 0.35% of the total
UK population, or about 210,700 people.

Causes
There a number of reasons for finding out where possible the cause of a
person’s learning disabilities. One is that often individuals and their families
want to know, and have a right to do so. There are also health factors. It is
important to distinguish between learning disability and physical or mental
health problems which may well be treatable. In addition, some forms of
learning disability or syndromes are indicative of the likelihood of certain
health problems occurring. Genetic counselling may also be needed for the
family, and increasingly for people with learning disabilities themselves who
plan to become parents.

Among people who have a mild learning disability, in about 50% of cases no
cause has been identified. A number of environmental and genetic factors
are thought to be significant, although clearly diagnosed genetic causes have
been found in only 5% of people in this category.

Higher rates in some social classes suggest that factors such as large
families, overcrowding and poverty are important. Research increasingly
points also to organic causes, such as exposure to alcohol and other toxins



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prior to birth, hypoxia and other problems at the time of birth, and some
chromosomal abnormalities.

In people with severe or profound learning disabilities, chromosomal
abnormalities cause about 40% of cases. Genetic factors account for 15%,
prenatal and perinatal problems 10%, and postnatal issues a further 10%.
Cases which are of unknown cause are fewer, but still high at around 25%.

Support
With the decline of the medical model of learning disabilities, the focus of
support has shifted to health and social care, and to education. At the same
time, the training of professionals and support staff in these areas is improving
in content and structure. As a result people with learning disabilities are
beginning to lead longer and better quality lives. Emphasis is now on
inclusive approaches and community integration. Direct payments to enable
individuals to purchase their own services, together with the growth of
advocacy, are giving greater choice and control to people with learning
disabilities in running their own lives. Developments in person-centred
approaches and independent supported living are changing expectations.
The combined effect is that new opportunities are being opened up for people
with learning disabilities in areas such as employment, parenthood, lifelong
learning and citizenship. Even so, much remains to be done.




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Frequently asked questions
What are the causes of learning disability?

There are many reasons why learning disability occurs. Impairments which
cause or contribute to learning disability can happen before, during or after
birth.

Before birth or pre-natal: These are known as 'congenital' causes and include
Down syndrome or Fragile X syndrome.

During birth or peri-natal causes: For example oxygen deprivation resulting in
cerebral palsy.

After birth, or post natal causes such as illnesses, injury or environmental
conditions, for example, meningitis, brain injury or children being deprived
attention to their basic needs - undernourished, neglected or physically
abused.

It may be useful to know the causes of someone's learning disability, as some
types of learning disability are thought to be associated with particular
learning characteristics. For example, some syndromes or impairments are
associated with medical conditions. Knowling this will enable us to help
people avoid situations which may be dangerous or help us deal with
emergencies.

However, we need to remember that people are people first, and value their
individuality. People with a learning disability, like the rest of us, dislike being
labelled and always described in terms of their disability.

What principles underpin care and support?

In working with and supporting people with learning disabilities, there are
certain basic principles and values that sum up everything we believe and
guide everything we do.

Empowerment: A shift in the balance of power so that people with learning
disabilities can make their own decisions and take control of their own lives.

Choice: Having access to a wide range of options, deciding for yourself which
ones suit you best and having your choice respected.

Dignity: Recognising and valuing people with learning disabilities as equal
human beings with the same rights as every other citizen.

Individuality: Responding to and working with each person as an individual
with his or her own unique personality, perspective and strengths.




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Privacy: Ensuring that everyone is treated at all times in a manner which
safeguards their dignity and does not expose them to any situations which
might humiliate or embarrass them or cause them personal or emotional
discomfort.

What do we mean by challenging behaviour?

We use the term challenging behaviour to emphasis that the behaviour is a
challenge to us and the situation or circumstances a person finds himself or
herself in. It is an individual's way of saying "I don't like (or want) this, and I
want to change (or stop) it. there are always good reasons for the challenge.

Because people with learning disabilities often have communication
difficulties, they can find it difficult to challenge things verbally.

They may not have the confidence to challenge people they see as 'authority
figures'. Those with profound and multiple disabilities may be unable to
remove themselves from a situation they dislike or may be unable to make
themselves understood.

Why are people with learning disabilities at greater risk of
mental health problems?

The risk of mental ill health is greater among people with learning disabilities
than among the general population. Common mental health problems such as
anxiety and depression occur more frequently among this group of people.

This is sometimes referred to as a dual diagnosis of learning disability and
mental health, or simply as a dual diagnosis.

There are various additional physical, psychological and social factors which
mean that people with learning disabilities are at greater risk of mental health
problems.

For example:

In people with Down syndrome, there is a high risk of Alzheimer's disease

The unsettled and uncertain lives led by many people with learning disabilities
can expose them to a greater extent that other people to disruption, loss,
separation and all the grief that is associated with these.

People with learning disabilities may have very little in the way of family,
friends or relationships in their lives They are strongly disadvantaged in
socially important areas such as education and work, and may have low
status and little money. All this contributes to a sense of worthlessness and
isolation.




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I have heard the terms profound, severe, moderate and mild
learning disability. What do these mean?

The words, mild, moderate, severe and profound are used to describe the
degree of learning disability that a person has. One way to establish the
‘degree’ of learning disability is to use the measure of IQ. This measure
suggests that people with an IQ of less than 20 will be described as having a
profound disability, those with an IQ of 20 – 50, a severe learning disability,
and 50-70, a moderate or mild learning disability.

However, knowing the degree of intellectual impairment a person has tells you
very little about who they are and the kind of help and support they might
need. The way people’s disabilities impact on their lives will vary, and affect
the nature of the support they might need.

People with profound learning disabilities tend to need significant support with
most daily tasks, and will often have additional physical or mobility problems.
PAMIS, the network for people with profound and multiple disability estimates
that such people can require on average, seven hours each day to meet their
basic physical needs such as dressing, washing and eating.

There has been some work (e.g. American Association on Mental
Retardation) to develop a classification of levels of support, from ‘intermittent’,
through ‘limited’, ‘extensive’ and finally ‘pervasive’. This framework attempts
to move away from terms of degree of disability, through to a framework of
levels of support. It is likely that for people with profound learning disabilities,
this level of support may remain at the same level for long periods of time. For
people with mild learning disabilities, it may be much more fluid, and change
in response to changing circumstances.




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