Definitions

Learning Disabilities

 

What is a learning disability?

A learning disability is a type of disability caused by the way in which the brain develops. There are many different types, but most develop before a baby is born, during birth, or because of a serious illness in early childhood.

A learning disability is a life-long disability, and it usually has a significant impact on a person’s life. A learning disability is not a mental illness or dyslexia, although a person with a learning disability may also suffer from these (and other) problems. People with a learning disability commonly find it harder than others to learn, understand and communicate.

There are around 1.5 million people with a learning disability living in the UK. A person with a learning disability is just like any other person – they are all individuals who want different things in life, and need different levels of support to achieve this.

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What are the causes of a learning disability?

A learning disability is caused by the way in which the brain develops, before, during or soon after the birth of a child.

It may be that before the birth, something happened to the central nervous system (the brain and the spinal cord). A child can be born with a learning disability if the mother has an accident or illness while she is pregnant, or if the unborn baby develops certain genes. Genes are chemicals in our bodies that contain information about us – like how we look.

A person can be born with a learning disability if he or she does not get enough, or is starved of, oxygen during childbirth, or is born too early.

After birth, a learning disability can be caused by an early childhood illness.

A child can also be born with a learning disability if certain genes are passed on by a parent. This is called an inherited learning disability. The two most common causes of inherited learning disability are Fragile X syndrome and Down’s syndrome. Fragile X syndrome and Down’s syndrome are not, themselves, learning disabilities, but people who have either condition are likely to have a learning disability also.

Fragile X syndrome is the most common cause of inherited learning disability, although not all people with Fragile X syndrome have a learning disability.

Down’s syndrome is a genetic condition caused by an extra chromosome in a person’s cells – all living things are made up of ‘cells’. Chromosomes are a part of these cells. All people who have Down’s syndrome have some kind of learning disability.

It is important to remember that often it is not possible to say why someone has a learning disability.

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What is meant by ‘profound and multiple learning disabilities’ (PMLD)?

People with a PMLD have more than one learning disability. They may also have physical or sensory disabilities, complex health needs and/or a mental health condition. It is recognised that people with a PMLD may have behaviours that challenge; these may be physical, verbal and/or mental.

A person with a PMLD may have great difficulty in communicating with others. They are likely to require high levels of support to carry out daily living tasks, such as washing, dressing, eating and drinking.

Pattom supports people with a PMLD. Please see Our Services.

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Facts about learning disabilities

Most people with a learning disability are regarded as ‘different’. This might be because they do not have the same control over their lives as the rest of society. Often, they face challenges and prejudice on a daily basis.

  • Less than 1 in 5 people with a learning disability work (compared with 1 in 2 disabled people generally), but we know that at least 65% of people with a learning disability are willing to work.
  • Of those people with a learning disability that do work, most work only part time, and are paid very low salaries.
  • Just 1 in 3 people with a learning disability take part in some form of education or training.
  • Children with a learning disability are often socially excluded, and 8 out of 10 children with a learning disability are bullied at some point in their lives.
  • 1 in 2 families with a disabled child live in poverty.
  • At least half of all adults with a learning disability will remain living in the family home, meaning that most do not get the chance to experience complete independence, learn and develop key life skills, make choices about their own lives and live the way they may want to.
  • People with a learning disability are 58 times more likely to die aged under 50 than other people. And four times as many people with a learning disability die of preventable causes (compared with people in the general population).
  • 75% of GPs have received no training to help them treat people with a learning disability.
  • Less than a third of people with a learning disability have some choice regarding with whom they live, and less than half have some choice over where they live.
  • 7 out of 10 families caring for someone with profound and multiple learning disabilities have reached or come close to ‘breaking point’ because of a lack of short break services.
  • 29,000 adults with a learning disability live with parents aged 70 or over, many of whom are too old or frail to continue in their caring role. In only 1 in 4 of these cases have local authorities planned alternative housing.


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Associated conditions

People with a learning disability may also have other physical and/or emotional conditions, and may receive more than one diagnosis. This could have a big impact on the kind of support they, and their families and carers, need on a day-to-day basis.

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Autism

Autism is a complex developmental disability that typically appears during the first three years of life, and is the result of a neurological disorder that affects the normal functioning of the brain. It impacts development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.

Autism is a lifelong condition that can affect the way a person communicates and relates to other people and the world around them. People with autism often see the world as a chaotic place with no clear boundaries, order or meaning. Autism is not a learning disability, but research suggests that around half of people with autism may also have a learning disability.

For example, classic traits include:

  • Difficulty making eye contact
  • Repetitive speech
  • Difficulties expressing themselves especially when talking about emotions
  • Anxiety in social situations and resultant nervous tics

The National Autistic Society suggests that autistic spectrum disorder (ASD) affects around 500,000 families in the UK. The word ‘spectrum’ is used because the characteristics of the condition vary from one person to another and the variation in characteristics can be of a very large scale.

Pattom supports people with autism. Please see Our Services.

Please also see Our Staff for information on our specialist training courses, including our autism spectrum awareness training.

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Asperger’s Syndrome

Asperger’s syndrome is a form of autism which causes communication and emotional problems. People with Asperger’s syndrome can find it very difficult to tell how other people are feeling by looking at the expression on their faces or listening to their tone of voice, and as a result can find mixing with other people extremely difficult.

While there are many similarities with autism, most people with Asperger’s syndrome have fewer problems with speaking and are less likely to have, or be diagnosed with, a learning disability.

In order to try and make the world less confusing, people with Asperger’s syndrome often find that by having a daily set routine gives them the ability to cope with everyday life, however, if this routine is changed then this can cause them to become anxious and upset.

Pattom supports people with Asperger’s Syndrome. Please see Our Services.

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Mental Health

Most people will know someone who has a mental health problem, and this person could well be a family member or close friend.

It is recognised that common mental health problems, such as anxiety and depression, affect 1 in 6 people at any one time. Like many health problems, it is clear that mental health issues can be distressing for those suffering with them, and can also have a major impact on family life if the most appropriate help and support, including mental health nursing and treatment, is not available at the time it is required.

A mental disorder or mental illness is a psychological or behavioral pattern, associated with distress or disability, which occurs in an individual and is not a part of normal development or culture. The recognition and understanding of mental health conditions has changed over time, and across cultures, and there are still variations in the definition, assessment, and classification of mental disorders, although standard guideline criteria are widely accepted.

There are many different categories of mental disorder, and many different facets of human behavior and personality that can become disordered. Anxiety or fear that interferes with normal functioning may be classified as an anxiety disorder. Commonly recognized categories include specific phobias, generalized anxiety disorder, social anxiety disorder, panic disorder, agoraphobia, obsessive-compulsive disorder, and post-traumatic stress disorder.

Personality may be considered disordered if judged to be abnormally rigid and maladaptive. There are a number of different such personality disorders, including those sometimes classed as eccentric (e.g. paranoid, schizoid and schizotypal personality disorders), or those sometimes classed as dramatic or emotional (antisocial, borderline, histrionic or narcissistic personality disorders), or those seen as fear-related (avoidant, dependent, or obsessive-compulsive personality disorders).

People who are abnormally unable to resist certain urges or impulses that could be harmful to themselves or others, may be classed as having an impulse control disorder, including various kinds of tic disorders such as Tourette’s syndrome, and disorders such as kleptomania (stealing) or pyromania (fire-setting). Various behavioral addictions, such as gambling addiction, may be classed as a disorder. Obsessive-compulsive disorder can sometimes involve an inability to resist certain acts but is classed separately as being primarily an anxiety disorder.

A range of developmental disorders that initially occur in childhood may be diagnosed, for example autism spectrum disorders, oppositional defiant disorder and conduct disorder, and attention deficit hyperactivity disorder (ADHD), which may continue into adulthood.

Diagnoses are made by psychiatrists or clinical psychologists, using various methods, often relying on observation and questioning in interviews. Treatments are provided by various mental health professionals.

Psychotherapy and psychiatric medication are two major treatment options, as are social interventions, peer-support and self-help. In some cases there may be involuntary detention and involuntary treatment, where legislation allows.

There are many other good sources of information available on the Internet, and many of these are charitable organisations that can provide information and support on specific health issues as well as advice on living with a mental health problem.

Please see Our Services.

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Other Information

 

Cerebral Palsy

Cerebral palsy itself is not a learning disability, however, many people diagnosed with cerebral palsy also have a learning disability as a result of this. It is not a disease or an illness, but a physical condition that affects the person’s movement and control of their body. It is caused by a part of the brain that has not developed properly either before birth or during early childhood. There are several different types of cerebral palsy, depending on which parts of the brain have been damaged. Some people are severely affected by cerebral palsy, and it is easy to see their disability, while it is more difficult to spot others.

Pattom supports people with cerebral palsy. Please see Our Services.

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Challenging behaviour

The term “challenging behaviour” has been used to refer to the “difficult” or “problem” behaviours which may be shown by children or adults with a learning disability.

Such behaviours include aggression (e.g. hitting, kicking, biting), destruction (e.g. ripping clothes, breaking windows, throwing objects), self-injury (e.g. head banging, self-biting, skin picking), tantrums, and many other behaviours (e.g. running away, eating inedible objects, rocking or other stereotyped movements).

Characteristically, challenging behaviour puts the safety of the person (and others) in some jeopardy, or has a significant impact on the person’s (or other people’s) quality of life.

In general, challenging behaviour is more common in people with a learning disability than in people without learning disabilities, although people without learning disabilities might display lots of challenging behaviour very early in their lives.

Unfortunately, challenging behaviour is not generally like an infection which can be treated by a short-term course of antibiotics. But there is still a great deal that can be done to prevent and treat challenging behaviour.

Pattom supports people with challenging behaviour. Please see Our Services.

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Early onset dementia

Although dementia is a disease more commonly associated with the elderly, there are cases of people younger than 65 with dementia.

In the UK, there are more than 15,000 younger people with dementia. The true number is likely to be higher because not all those with early onset dementia seek help at an early stage of the disease.

Whatever the age, the symptoms of dementia remain the same, but younger people may have different needs, and their problems often require a different approach.

Like late onset dementia, there are different types of early onset dementia. Only one-third of younger people with dementia have Alzheimer’s disease. The following are other common forms of early onset dementia:

  • Vascular dementia occurs when the blood vessels in the brain are deprived of oxygen from varying illnesses including, a stroke or a series of strokes.
  • Fronto-temporal lobar degeneration (FTLD) includes three clinical presentations: a behavioural form (fronto-temporal dementia) and two language forms (semantic dementia and progressive nonfluent aphasia).
  • Alcohol-related brain impairment, often called Korsakoff’s syndrome, occurs in people who have regularly consumed a large amount of alcohol. It is caused by a lack of thiamine (vitamin B1) in the body, which affects the brain and other parts of the nervous system.

There are rarer forms of dementia, such as prion disease, or inherited conditions that can cause dementia.

Pattom supports people with early onset dementia. Please see Our Services.

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Epilepsy

Epilepsy is one of the most common conditions affecting the brain. It is not a learning disability, but around 30% of people with a learning disability also have a form of epilepsy. Epilepsy causes seizures, and this happens when the way the brain works becomes disrupted. Most seizures are sudden and short-lived, lasting between a matter of seconds and a few minutes. For many people their epilepsy can be controlled by taking the right form of medication.

Pattom supports people with epilepsy. Please see Our Services.

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Outcomes-based support

Recently it has been identified that there is a need for change in the way that services are provided and monitored. We understand this need for change and fully embraces it. All of our services are designed to ensure that each person achieves their desired outcome in a way best suited to them. This is done by ensuring that at the commencement of services that the desired or key outcomes are identified and a plan created. The focus will be task-orientated and each outcome will be broken into manageable steps with a timescale for achieving each outcome. Each person will have different outcomes they wish to achieve and will set different timescales for these; this is why each outcomes agreement is completed on an individual basis and agreed by all persons involved. It is also reviewed at agreed intervals. During these reviews, completed outcomes will identified and new outcomes discussed.

Outcomes-based support is a part of Our Vision.

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Person-centred approach

Person-centred approaches are a vital element of good practice, and should be the most important and key part in the delivery of any support. This practice should extend across all of adult social care sector, including the commissioning of services.

Recent examples of this are to be seen in services where self-directed support is the mechanism for the commissioning and funding of the service.

As an organisation dedicated to supporting people to develop their lives, and fulfil their wishes, dreams and ambitions, Pattom has identified and uses a number of helpful tools to make the planning of people’s lives easier.

All our staff receive training in person-centred planning, and also outcome-based approaches. We always aim to ensure that the individual has the ability to express their views about what they want and need, so that the support we provide can meet these.

In a case where the person has complex needs and PMLD, we can use other tools and methods to understand their needs and wishes to ensure that this can still be centred around them as an individual.

A person-centred approach is a part of Our Vision.

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Personalisation

Personalisation is described by the Department of Health as a social care approach, meaning “every person who receives support, whether provided by statutory services or self funding, will have choice and control over the shape of that support in all care settings.”

The overall aim is for all service users to have control over how money allocated to them is spent. This includes service users receiving direct payments, individual budgets, personal budgets, and self-directed support. Self-assessment will also be a cornerstone of personalisation, giving service users the opportunity to assess their own support needs and deciding how their individual budgets are to be spent to meet their assessed needs.

As the personalisation agenda advances, the role of advocacy and support brokerage will become vitally important. If personalisation is to achieve its core aims, it will be essential that those accessing individual budgets can refer to sources of advice and support. Councils will also have to strike the right balance between giving people the freedom to choose their own care and protecting clients and their budgets from abuse.

‘Putting people first’, published in December 2007, contains the government’s vision of how personalisation of social care services will allow people more control over their own lives and the services they choose.

Pattom supports the personalisation agenda, and it is a part of Our Vision.

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PECS

PECS – or the Picture Exchange Communication System – when introduced correctly and practised rigorously is very useful for developing communication skills, particularly in children with autistic spectrum disorders.

When a child reaches for something they want, a picture is introduced in between the child and the desired object or activity. When the child then gives the adult the picture, the adult immediately gives the child the object (or activity) they want.

This exchange can take place very quickly, particularly when a child is not physically disabled. The process works with all kinds of communication, from a simple request to the use of complex sentences (in pictures and/or words), and is always based on the exchange principle.

For information on Pattom’s communications training, please see Our Staff.

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Palliative Care and End of Life Support

End of life care is support for people who are approaching death. It helps them to live as well as possible until they die, and to die with dignity. It also includes support for their family or carers.

End of life care includes palliative care. If you have an incurable illness, palliative care will help to make you as comfortable as possible by relieving pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family or carers. This is called a holistic approach to care, as it deals with the ‘whole’ person rather than just one aspect of their care.

For more information on Palliative/End of Life Care then please visit www.nhs.uk/Livewell/Endoflifecare