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LEARNING DISABILITIES 
  
 
 
 
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1. 
Introduction 
In people of working age, learning disability is the commonest disability in the UK.1 
1.1 
Definition 
Learning disability consists of three main components: 
1. Impaired 
intellectual 
function. 
2.  Onset at birth or in early childhood. 
3.  Impaired coping and social skills. 
Learning disability’s intellectual effects have a particular impact on language and 
numeracy skills. Physical disability, epilepsy, mental illness, incontinence and 
immobility are important associated problems. 
The terminology used to describe learning disability changes with fashion, political 
correctness, and attempts to avoid stigmatising terms. In the UK, the term “learning 
disability” is used, but the expression “mental retardation” is preferred by the W.H.O. 
All the terms mean “arrested or incomplete development of the mind”.2  
Intelligence is a broad concept, including the ability to reason, comprehend and 
make judgements. Psychometric testing leads to an IQ (intelligence quotient). 
Intelligence is distributed in the population along a normal distribution curve. 
An IQ of 100 is the centre of the distribution curve. IQs of 70 and over are 
considered normal.  
IQ scores are used to define categories of learning disability:  
1.2 
Classification of Learning Disability  
 
EQUIVALENT MENTAL 
Classification IQ 
Proportion4 
AGE3 
Mild 
50 – 69 
8 – 12 years 
85% 
Moderate 
35 – 49 
3 – 8 years 
10% 
Severe 
20 – 35 
1 – 3 years 
3.5% 
Profound 
< 20 
< 1 year 
1.5% 
 
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1.3 
Functional Effects of Learning Disability 
There is considerable overlap of functional ability between the categories of learning 
disability. 
1.3.1 
Mild Learning Disability 
This is not usually associated with abnormalities in appearance or behaviour. 
Language, sensory and motor abnormalities are mild or absent. Because it is mild, 
the problem is not usually apparent until school age. Adults may have difficulty 
coping with stress, and may need support with complex functioning such as 
parenting and handling their finances. However, the majority are able to live 
independently in the community and manage some form of employment.5  
1.3.2 
Moderate Learning Disability 
People with moderate learning disability are rarely able to live independently, but 
they may learn to wash, dress and feed themselves. This group has limited but 
useful language skills. However, receptive skills tend to be better than expressive 
skills, leading to a high incidence of frustration and challenging behaviour. Help is 
needed with road sense and finances. Moderate learning disability is often 
associated with epilepsy, neurological, and other physical disabilities. 
1.3.3 
Severe and Profound Learning Disability 
This group of claimants have very limited verbal and self-care skills. Severe physical 
handicaps are very common. Epilepsy affects 33%, incontinence 10% and inability 
to walk 15%. Behavioural disturbance such as purposeless, self-harming or 
inappropriate sexual behaviour becomes more common with increasing severity of 
learning disability. It occurs in up to 40% of children and 20% of adults in these 
categories.5,6  
 
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2. 
Prevalence 
In England, it is estimated that there are 1.2 million people (2% of the population) 
with mild or moderate learning disability, and about 120,000 adults with severe or 
profound learning disability.3,7,8,9  About 600,000 require input from specialist 
services.9  
  There are more males with learning disability than females, in a ratio of 1.5:1.3 
This is probably due to the greater prevalence of sex-linked inherited learning 
disability in males. 
  Learning disability is more common in developing countries because of a higher 
incidence of birth injury and anoxia, and early childhood infections.2  
  Mild learning disability is more common in lower socio-economic groups.10 
  The incidence of severe learning disability is falling due to improvements in 
prevention.3 
  In the UK, the amount spent on services for learning disability is about £3 billion 
per annum.11 
  In the UK, about 7,000 people with learning disability are in supported 
employment.12  
 
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3. 
Aetiology 
There is an obvious cause for mild learning disability in about half of cases.9  In the 
remainder, a combination of social, educational and emotional deprivation are the 
main contributory factors.5 
As the severity of learning disability increases, there is a rising chance of finding a 
specific cause. In severe learning disability, 80% have evidence of organic brain 
damage.3,9  
Birth injury accounts for 10% of those diagnosed with learning disability.4 It is 
estimated that up to 5% of learning disability is due to physical and emotional child 
abuse.9 
3.1 
Genetic Factors 
 Chromosomal 
abnormalities. 
Down’s and Fragile X Syndromes are the commonest chromosomal causes of 
learning disability.9 
  Metabolic disorders: Phenylketonuria and Tay-Sachs Disease (recessive) are 
examples. 
  Tuberous Sclerosis (autosomal dominant). 
3.2 
Intrauterine Factors 
 Malnutrition. 
  Fetal alcohol syndrome. 
  Infections: Rubella, Toxoplasmosis and Cytomegalovirus infections are 
examples. 
 Pre-eclampsia. 
3.3 
Perinatal Factors 
 Prematurity. 
 Hypoxia. 
 Intracerebral 
bleed. 
 Neonatal 
infections. 
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3.4 
Postnatal Factors 
  Meningitis and encephalitis. 
  Head Injury (accidental or physical abuse). 
 Malnutrition. 
  Toxins. (e.g. Lead). 
 Hypothyroidism. 
3.5 
Environmental Factors 
  Malnutrition (uncommon in developed countries.) 
 Socio-economic 
deprivation. 
 Emotional 
abuse. 
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4. 
Co-morbidity 
Learning disability is associated with a high prevalence of epilepsy and mental 
health problems.13 
4.1 
Physical Co-morbidity 
The more severe the learning disability, the higher the prevalence of serious 
physical disabilities.14  
 
Prevalence in severe 
Prevalence in mild 
Physical Impairment 
 learning disability 
 learning disability 
Cerebral Palsy 
20% 
8% 
Epilepsy 35% 
15% 
Severe Visual Impairment 
8% 
5% 
Severe Hearing 
9% 4.5% 
Impairment 
For a child with learning disability, the prognosis is poorer when there are multiple 
problems, especially those interfering with social relationships, and those inhibiting 
learning and play.13 
4.1.1 
Cerebral Palsy 
Cerebral Palsy causes spasticity and physical disability, but may be associated with 
normal intelligence.5 
4.1.2 
Epilepsy 
Making a diagnosis of partial epilepsy can be difficult, as patients with learning 
disability may be unable to describe their symptoms. Treatment of their epilepsy is 
complicated because they may have difficulty in describing side effects. To address 
these problems, there are national specialist education, treatment and assessment 
centres for adults with learning disability, including: the Chalfont Centre for Epilepsy 
and the David Lewis Centre. 
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4.2 
Psychiatric Co-morbidity 
40% of those diagnosed with learning disability also have a mental illness.4,9  The 
risks increase with the severity of the learning disability.9 In adults with learning 
disability, schizophrenia, mood disorders, personality disorder and neurotic 
disorders are all more common.3,9,14  
  Learning disability + personality or behavioural disorder – 25 - 30%.    
  Learning disability + mood disorder – 10 -15%.                                       
  Learning disability + obsessive-compulsive disorder – 4%.                              
  Learning disability + schizophrenia – 3%.                                                            
  Learning disability + dementia – 3%.                                                              
Because of difficulty with communication, those with learning disability may not have 
the skills to express and describe what they are experiencing, so presentations may 
differ from those with a normal IQ. The observation of behavioural changes such as 
psychomotor retardation, agitation and possible responses to hallucinations can be 
helpful, and information from family and carers is especially important.9  
 
Co-morbid 
Effects of Learning Disability 
Condition 
Delusions are less elaborate and hallucinations are simple 
Schizophrenia 
and repetitive. 
Patients are less likely to express depressive ideas. Carers 
Depression 
may observe sadness or alterations in behaviour or sleep 
pattern. The suicide rate is lower.4  
Adjustment 
Common when there are changes to routine, such as loss of 
Disorders 
carers. 
Phobias 
Easily overlooked because of language difficulties. 
Obsessive-
More frequent than in the general population. Over-eating 
Compulsive 
and unusual dietary preferences are frequent.  
Disorder 
Personality Disorder  Common, and can lead to greater management problems. 
Tends to occur at a younger age in those with learning 
Dementia 
disability. 
Sleep Disorder 
Common, and may cause significant stress in carers. 
Mild learning disability is associated with a higher rate than in 
Criminal Behaviour 
the general population. Arson and sexual offences 
(exhibitionism) are particularly common. 
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5. 
Autistic Spectrum Disorders 
The term 'autistic spectrum disorders' is used to describe a group of developmental 
conditions that affect the way the brain processes information. People with autism 
are severely affected, while Asperger syndrome describes people at the higher 
functioning end of the autistic spectrum. 
5.1 
Autism 
Autism is a lifelong developmental disability that affects the way a person 
communicates and relates to people around them. The core feature of autistic 
spectrum disorders is difficulty in “making sense of the world.” An autistic person 
experiences a confusing mass of events, people, places, sounds and sights without 
order or meaning. Thus, a lot of time is spent trying to “work out the pattern behind 
everything”.15  
The range of intellectual ability extends from severe learning disability to above 
average IQ. 15  
5.1.1 
Epidemiology 
The prevalence of autism is about 5 in 10,000.3,9,15,16  More males than females are 
diagnosed with autism in a ratio of 4:1.16  The prevalence does not vary with socio-
economic class. 3,14,17 
5.1.2 
Aetiology 
Twin and family studies suggest a genetic component to the development of 
autism.3   A family that already has one autistic child has a 3% risk of having 
another.15  Autism is also strongly associated with organic causes of learning 
disability such as complications of pregnancy and birth. Neurochemical studies of 
autism have reported abnormalities in dopamine and serotonin metabolism. 
5.1.3 
Core Clinical Features 
Autism is usually apparent by the age of 3 years. 9 
  Abnormal Social Interaction.  
There is failure to initiate, develop or respond to social situations, poor grasp of 
nonverbal social cues and avoidance of eye contact, so people with autism may 
appear aloof and indifferent. 
  Impaired Language and Communication Skills. 
This includes delayed or impaired language development, difficulty maintaining 
conversation, lack of creativity and lack of imaginative play. 
  Restricted and Repetitive Behaviour.  
This includes a “rigid routine,” interests and activities that have a preoccupation 
with dates or numbers, and a stereotyped behaviour pattern such as hand 
flapping, nodding or rocking. 
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Because they can concentrate on a single task for long periods, people with autism 
can become very proficient in those tasks that interest them. About 10% of children 
with autistic spectrum disorders have a special skill at a much higher level than the 
rest of their abilities - for example, music, art, numerical calculations or jigsaw 
puzzles.15 
5.1.4 
Complications 
  75% have learning disability.3,9 
  20% have fragile X syndrome and 6% have tuberous sclerosis.16  
  25% develop epilepsy.17 
  Psychiatric co-morbidity is common. 
Problems with communication and difficulty in adjusting to change often cause 
frustration, which may result in aggressive or challenging behaviour. It is best to talk 
to the autistic person in unambiguous terms, and maintain a routine. When 
challenging behaviour does occur, it can sometimes be channelled into harmless 
activities such as shredding paper or punching a pillow.15  
5.1.5 
Prognosis 
Autism typically runs a steady lifelong course.9   Specialised education and support 
aim to help a child to maximise their skills and achieve their full potential. Although 
some autistic adults learn to adapt partially to their disability, only 11% gain jobs on 
the open market, and only 15% achieve independent living.9,17,18 
5.2 
Asperger Syndrome 
Asperger syndrome has the same core features as autism, but is at the high 
functioning end of the autistic spectrum. People with Asperger syndrome find it hard 
to read social signals, and as a result, they find it difficult to communicate and 
interact with others.15 
People with Asperger syndrome can speak fluently, but they may not understand the 
reactions of the people listening to them. They may talk on and on, regardless of the 
listener's interest, or they may appear insensitive to the listener’s feelings. Jokes, 
turns of phrase and metaphors can be confusing to a person with Asperger 
syndrome, because they tend to think in an over-literal way.  
People with Asperger syndrome often develop an obsessive interest in memorising 
facts about a special subject, such as train timetables. They also prefer a set 
routine. Any unexpected happening or change in the routine can upset them. 
Children with Asperger syndrome usually have normal or above average 
intelligence, and they attend mainstream school. Many seem clumsy: they have poor 
coordination and difficulties with fine motor control. Adults with Asperger syndrome 
can be considered eccentric, and may resemble those with a schizoid or anankastic 
personality disorder. (See the protocol Personality Disorders for further 
information.) 
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These problems of social interaction are the main cause of disability, and may make 
it difficult for a person with Asperger syndrome to cope in a working environment.15 
The prevalence of Asperger syndrome is estimated to be about 36 per 10,000 in the 
UK.15  
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6. 
Down’s Syndrome 
Down’s syndrome is the commonest specific cause of learning disability. 
6.1 
Epidemiology 
The incidence of Down’s syndrome is falling because of increased antenatal 
detection. 
Overall, it occurs in 1 in 650 live births. For mothers aged 20 - 25 the incidence is 1 
in 2,000 live births, increasing to 1 in 45 for a mother over 45.4 
6.2 
Aetiology 
The vast majority of cases of Down’s syndrome are caused by trisomy 21. 
6.3 
Clinical Features 
Down’s syndrome is associated with a typical facial appearance and short stature. 
85% have moderate or severe learning disability.9 
5% have autistic features and 25% have hyperkinetic disorder.4,9 
Physical health problems are associated with Down’s syndrome: 
  Congenital heart disease – 40%, of which half require surgery.9,19 
  Visual and hearing impairment – 50%.19 
  Hypothyroidism – 30%.19 
  Oesophageal and duodenal atresia. 
  20% increased risk of developing infections and leukaemia.20 
 Atlanto-axial 
instability. 
Cognitive decline and dementia (similar to Alzheimer’s disease) occurs 30-40 years 
earlier than in the general population, and affects 25% of people with Down’s 
syndrome.20 
6.4 
Prognosis 
Some live independently in sheltered accommodation, and some find sheltered or 
standard employment.20 
With improved medical care, survival has improved. At the beginning of the 20th 
century, life expectancy was less than 10 years. Now it is close to 50 years, with a 
quarter living beyond the age of 50.4 
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7. 
Fragile X Syndrome 
Fragile X syndrome is the second commonest cause of moderate and severe 
learning disability after Down’s syndrome, accounting for 20 - 30% of learning 
disabilities.  
Fragile X syndrome is the commonest directly inherited cause of learning disability.  
7.1 
Epidemiology 
Fragile X syndrome occurs in 1 in 1000 males. A milder form affects 1 in 2500 girls, 
who may have normal intelligence.4,21 
7.2 
Clinical Features 
Fragile X syndrome is associated with a typical appearance, including an elongated 
face, large ears and blue eyes. Other features include flat feet, macro-orchidism and 
hyper-flexible joints. The physical features usually develop by puberty, with infants 
often appearing normal. Females only tend to exhibit large or prominent ears. 
The degree of learning disability is similar to that in Down’s syndrome, 80% of males 
having an IQ less than 70.22,23   People with fragile X syndrome have particular 
problems with language skills. They also have an aversion to loud noise and strong 
smells. Difficulty adjusting to change, (particularly environmental change), and mood 
instability are also prominent features.22 
Boys tend to have more behaviour problems and girls tend to be shy and socially 
withdrawn. Girls often suffer from anxiety and depression. 
Fragile X syndrome is associated with autism and ADHD.9 
80% have mitral valve disease and 20% have seizures. Recurrent ear infections and 
squint are more common, and there is an increased incidence of connective tissue 
disorders.9,22 
7.3 
Prognosis 
Behavioural problems tend to improve with age. 
Some people with fragile X syndrome are employed and are able to live 
independently. The majority need day-to-day supervision. They work in a sheltered 
environment, and either live at home or in supported accommodation. 
 
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8. 
Attention Deficit Hyperactivity Disorder – ADHD 
ADHD does not have a significant effect on an individual’s intelligence.24   People 
with ADHD are creative and intuitive, but their full potential may not be achieved 
because of poor concentration. If untreated, ADHD interferes with educational and 
social development and predisposes to mental illness. 
8.1 
Epidemiology 
The prevalence of ADHD varies in different countries due to different diagnostic 
practices. For example, in the UK it is about 1%, but as high as 5% in the US.3  More 
males are diagnosed with ADHD than females in a ratio of 9:1.3 
It occurs in all cultures and all social classes.25 
8.2 
Aetiology 
The aetiology of ADHD is a mixture of genetic (prevalence 5 times higher in 
relatives), medical (as a result of encephalitis) and emotional (child abuse) 
causes.3,4,26  Lead poisoning and food additives are also thought to play a role.4  
8.3 
Core Clinical Features 
Unless it is very severe, ADHD is not usually recognised until the child has started 
school.3 
  Inattention 
Easily distractible, forgetful, difficulty sustaining tasks such as play, learning and 
work. 
  Overactivity 
Fidgety, reckless, socially disinhibited, inappropriately active, talking excessively. 
  Impulsivity 
Interrupts and intrudes, unable to “wait their turn.” 
People with ADHD tend to be clumsy, accident-prone and get into trouble with 
parents and teachers. Others learn to avoid them, so they become socially isolated.9 
8.4 
Complications 
20% of children diagnosed with ADHD have learning difficulties, including speech, 
language, social and relationship problems.25 
A significant number of adults labelled as suffering from personality disorder are 
actually suffering from ADHD, and as such are likely to respond to medication.26  
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8.5 
Treatment 
Ritalin (methylphenidate) is an amphetamine-like stimulant. It has the paradoxical 
effects of decreasing activity level and improving attention. It helps to improve 
academic performance and relationships.27  
Medication produces a short-lived improvement after each dose, but it is not a 
permanent cure.24,28 
8.6 
Prognosis 
By the second decade, the problems of impulsivity and inattention tend to improve, 
even without medication. However, the learning difficulties caused by ADHD in 
childhood have long-term consequences.26 About 60% of adults continue to 
experience problems.25,28  There are high levels of psychiatric co-morbidity:3,25 
Psychiatric co-morbidity in adults: 
  ADHD + mood disorders – 18 - 59% 
  ADHD + anxiety – 10 - 50% 
  ADHD + antisocial personality disorder – 12% 
  ADHD + substance abuse – 20 - 30% 
Adults with ADHD are most likely to succeed in employment where it provides a 
stimulating, yet structured, environment. 
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9. 
Management of Learning Disability 
In a specialist child development clinic, the assessment of learning disability begins 
with interviews with the patient, their parents and other carers. The family history, 
obstetric history, developmental milestones and schooling history are particularly 
important. A physical examination includes assessments of vision and hearing. 
Standardised measures of intelligence, language, motor and social skills complete 
the assessment. 
When children with learning disabilities suffer psychiatric symptoms, drug treatments 
are used less often than in adult psychiatry. The emphasis is on psychological 
treatments and working with the whole family to solve problems. In adults with 
learning disabilities, the treatment of medical and psychiatric problems is similar to 
that in other patients, but some forms of psychological treatment may not be 
appropriate, depending on the patient’s intellectual abilities. 
9.1 
Education 
Children with learning disability are usually educated within mainstream schools. An 
educational psychologist will assess their educational needs, and in the most severe 
cases, (1% of children), may recommend that they attend a school specialising in 
the education of children with learning disabilities: Special Schooling. This 
assessment of special educational needs is called a “Statement of Need.” The 
Statement is very significant because the local education authority is obliged to 
provide the services that it recommends.29  
A typical UK school might include 3% of pupils with a Statement of Need and a 
further 17% within the less severe category: Special Educational Needs.29  Children 
with mild learning disability spend most of their time as part of the main class, but 
receive additional individual and/or small group teaching. 
Since 1992, there has been provision for college education for those with learning 
disabilities up to the age of 25. Courses include literacy skills, development of 
personal relationships and leisure activities.12 
(The classification in this protocol uses medical definitions of mild, moderate, severe 
and profound learning disability. In other contexts, the terms may have different 
meaning, and this should be remembered when interpreting medical evidence from 
an educational professional.) 
9.2 
Family Support 
The birth of a child with disabilities puts great strain on most families. The parents 
may grieve for the loss of their anticipated healthy child. The additional physical and 
financial burdens of caring for their child can lead to marital disharmony. However, 
the majority of families eventually adjust, with support from healthcare professionals, 
social workers, teachers, family, friends and self-help groups.  
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9.3 
Creative Therapies 
Activities such as art, music and drama can help a person with learning disabilities 
to express themselves. 
9.4 
Employment Opportunities 
Sheltered workplaces allow those with practical skills to develop a routine and a role 
in society. Opportunities for supported employment can be accessed via the 
Disability Employment Adviser at Jobcentre Plus. Other employment agencies 
include: The Shaw Trust, Remploy and the Mencap Pathway Employment Scheme. 
The 1995 Disability Discrimination Act protects employees with learning disability. 
9.5 
Accommodation and Supervision 
A large majority of people with learning disability are able to live independently or 
with their families.5 Institutional care is only required for a minority of adults. 
Typically, it is now provided in small community units. Periods of respite care can 
provide an essential break for carers. 
40% of parents caring for a child with learning disability are over the age of 60. 
Projects are exploring how to support this group of people with learning disability in 
their transition to new living arrangements.30  
9.6 
Key Worker 
The primary care team, psychiatrists with a special interest in learning disability and 
social workers aim to coordinate their efforts to provide for the health and social 
needs of adults with learning disability. Many agencies can be involved, and it has 
been found that the appointment of a key worker can help a person with learning 
disability to gain assistance when it is needed.14 
9.7 
Psychological Therapies 
Suitably modified behavioural and cognitive techniques can be successfully applied 
to patients with learning disabilities. For example, problems such as wetting and 
soiling, impulsive behaviour and phobias can be treated by behavioural therapy. 
This approach works by offering praise and rewards for practising the desired 
behaviours.9,14 
9.8 
Drug Treatments 
Sedative antipsychotics are occasionally used as an adjunct to behavioural 
strategies in managing severe behavioural disorders, although evidence of benefit is 
lacking.3,31 
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9.9 
Self-Help Groups 
People with learning disabilities and their carers can share information and gain 
support from others with similar experiences. These groups also aim to influence the 
provision of services and facilities for disabled people. 
9.10  Prevention 
The availability of genetic counselling and antenatal diagnosis of conditions such as 
Down’s syndrome has led to a reduction in the incidence of some learning 
disabilities. Improved perinatal care reduces the risk of brain damage. The early 
detection of hormonal or metabolic problems such as hypothyroidism or 
phenylketonuria allows treatment before learning disability sets in.5 
There is some evidence that educational intervention in children of mothers with mild 
learning disability may improve their educational performance, (though not IQ), and 
reduce the risk of conduct disorders.5 
9.11  Outcome 
Overall, people with learning disability are living longer and enjoying a better quality 
of life because of improvements in health and social provision.32  
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10.  Main Disabling Effects 
People with learning disability all have impaired performance of intellectual tasks 
such as learning, short-term memory, use of concepts and problem solving. Some 
may have problems with spatial awareness, which may cause difficulty with 
dressing, for example. Poor language skills cause problems with social interaction, 
and are strongly associated with behavioural disorders. Additional disabilities such 
as epilepsy, impaired vision and hearing and physical problems often compound the 
disabling effects of learning disability. Learning disability runs a chronic life-long 
course.  
10.1  Assessing the Claimant   
The assessment should be made using all the information available. This includes 
information from the claimant’s file, informal observations, medical history, typical 
day, appropriate physical examination, and assessment of their mental state.   
Some causes of learning disability are associated with particular facial appearances 
or physical features. When present, these may indicate the likely range of disability. 
When it is available, information from family or carers accompanying the claimant 
will be valuable. However, sometimes carers can be over-protective, and it is 
essential to develop a rapport with the claimant so that their language and social 
skills can be observed. 
10.1.1  Mild Learning Disability 
Claimants who are suffering from mild learning disability will have attended 
mainstream schooling. They may be living in their own home, with their family, or in 
supported accommodation. They will be able to do most things for themselves, 
although they are likely to need help with managing their finances. Their typical day 
history will reveal little or no restriction in their activities of daily living: they will be 
able to travel independently on public transport, do their shopping, enjoy contact 
with friends and family, and develop interests and hobbies.  
10.1.2  Moderate, Severe and Profound Learning Disability 
Claimants within these categories of learning disability will not be able to live 
independently. . 
Certain syndromes always cause severe learning disability.  Many of these are 
described in the table in Section 12. Common conditions such as autism and 
Down’s syndrome encompass a spectrum of severity, and these cases should be 
assessed individually.  
 
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10.2  Helpful Questions for Assessing the Disabling Effects of 
Learning Disability 
  Who is accompanying the claimant at the assessment? Was their presence 
necessary? Those with mild learning disability may be able to attend an 
examination centre alone or cope with an assessment at home without a 
companion.  
  Does the claimant also have a physical disability, epilepsy, or a mental illness?  
The combined effects of multiple disabilities are likely to be severe.  
  What sort of education has the claimant had? Receipt of a “Statement of Need” 
is significant, while attendance at a “Special School” indicates a very high level 
of learning difficulties.  
  Where is the claimant living? Do they have a home of their own, are they living 
with their family, in supported accommodation, or in long-term residential care?  
  Is the claimant currently attending support groups or college for further education 
courses in life skills and independent living? What is the planned outcome: are 
they aiming to live independently, or to gain work in a sheltered or open 
environment? 
  Is the claimant able to initiate and complete household tasks? Can they plan and 
prepare a meal? Can they go shopping independently? What is the change from 
£1 if a bag of sweets costs 75p? 
  How did the claimant travel to the examination centre? Some claimants will be 
able to travel alone on familiar routes, but would not be able to cope with a 
journey to an unfamiliar destination. 
10.3  How to Assess the Disabling Effects of ADHD 
ADHD is a treatable condition, which tends to improve in adult life. Each case should 
be assessed individually, with special emphasis on the typical day and assessment 
of the mental state.  
10.4  IB-PCA Considerations 
The IB-PCA assesses the ability to work in the open jobs market, not sheltered 
placements. 
The criterion for exemption due to severe learning disability is: “a condition which 
results from the arrested or incomplete development of the brain, or severe damage 
to the brain and which involves severe impairment of intelligence and social 
functioning”.33
 
This can be interpreted as a person who is incapable of living independently. If 
sufficient medical evidence had been available, these claimants would have been 
exempted or accepted at the scrutiny stage. Note that the definition of moderate 
learning disability in this protocol may cause the individual to fall within the category 
of “severe learning disability” for exemption purposes. 
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Severe learning disability may include one or more of: 
  An inability to learn more than the most basic skills such as feeding, dressing 
and using the toilet. 
  The need for help with some or all bodily functions. 
  A failure to be aware of dangers, thus requiring supervision. 
  Severe behaviour problems that require supervision, such as self-harm or 
violence.  
It is very rare that a claimant with ADHD fulfils the criteria for exemption on the 
grounds of severe learning disability.  
For the purposes of the IB-PCA, dyslexia on its own does not cause significant 
disability. 
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11.  Reference Table of Selected Rare Syndromes 
 
Disabling 
Syndrome Aetiology 
Description34-38 
Effects 
Characteristic happy smile, inappropriate laughter, 
jerky movements, and wide-based gait. There is 
Angelman 
Chromosome  severe learning disability without speech but with 
Severe 
Syndrome 
Abnormality 
some ability to sign. Epilepsy occurs in over 80%. 
The condition is stable. It has an incidence of about 
1 in 20,000. 
There is a typical appearance and growth failure, 
learning disability (mean IQ 60-70), hyperkinesis 
Fetal Alcohol 
Toxic 
and microcephaly. The severity of disability depends 
Moderate 
Syndrome 
on the level of alcohol intake. Incidence is about 1 in 
1000 births. 
(XXY) Males with an extra X chromosome. Features 
Klinefelter 
Chromosome  include gynaecomastia and sparse facial hair. Mild 
Mild 
Syndrome 
Abnormality 
learning disability is associated with a small 
proportion of cases.  
This condition affects males. Treatment with 
Disorder of  
allopurinol can control the associated gout, but it 
Lesch-Nyan 
uric acid 
cannot prevent the neurological syndrome of 
Severe 
Syndrome 
metabolism 
choreoathetosis, spasticity, learning disability (IQ 
40-65), and self-mutilation. 
Occurs in A, B & C types. Until school age, 
Niemann-Pick  Disorder of lipid  development is typically normal, then there is 
Fatal 
Disease 
metabolism 
severe motor and intellectual deterioration. There is 
no effective treatment. Affects 1 in 10,000 births. 
An autosomal recessive disease, which occurs in 1 
Error of 
in 10,000 births. It is routinely screened for in the 
Phenylketonuria  phenylalanine 
None 
UK, and can be controlled by restricting the intake of 
metabolism 
protein. 
Features include: short stature, small hands and 
Prader-Willi 
Chromosome  feet, severe obesity and IQ 50-80. The incidence is  Moderate 
Syndrome 
Abnormality 
about 1 in 20,000 births. 
This condition begins to cause severe learning 
disability in the first 2 years of life, and eventually 
X chromosome 
Rett’s Syndrome 
results in severe global disability. “Hand wringing” 
Severe 
abnormality 
movements are a typical feature. It affects 1 in 
10,000 girls. 
Facial port wine stain indicates haemangiomas on 
Sturge-Weber 
the ipsilateral cerebral hemisphere. These cause 
Sporadic 
Moderate 
Syndrome 
contralateral seizures, often with hemiparesis and 
hemianopia. Learning disability is common.  
Progressive motor weakness from 6 months of age, 
Tay-Sachs 
Ganglioside 
and seizures, blindness, and deafness. The child 
Fatal 
Disease 
storage disease  dies before it is 5 years old. The incidence is 1 in 
2000 in Ashkenazi Jews. Autosomal recessive. 
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This condition is named after tuber-like growths on 
the brain and other tissues. It is associated with  50% have 
Tuberous 
Chromosome  learning disability, epilepsy, and characteristic skin  learning 
Sclerosis 
Abnormality 
lesions, including facial angiofibromas. Affects 1 in 
disability 
8000 births. Normal life expectancy for all sufferers. 
(45X) These girls lack an X chromosome. They 
Turner’s 
Chromosome  have short stature and a webbed neck. IQ is usually 
Mild 
Syndrome 
Abnormality 
average, but they have impaired verbal and 
numerical skills and right-left disorientation. 
 
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12.  Reference List  
1. 
Mencap. Understanding Learning Disability. http://www.mencap.org.uk 2002; 
2. 
WHO. World Health Report. http://www.who.int/whr/2001 2002; 
3. 
D. Bloye. Crash Course Psychiatry. Mosby, 1999. 
4. 
Michael Gelder, Richard Mayou, Philip Cowen. Shorter Oxford Textbook of 
Psychiatry. Oxford University Press, 2001. 
5. 
Cornelius Katona, Mary Robertson. Psychiatry at a Glance. 2000. 
6. 
Hassiotis A. Behavioural and cognitive-behavioural interventions for outwardly-
directed aggressive behaviour in people with learning disabilities. Cochrane 
Database of Systematic Reviews
 2002;Issue 1, 2002. 
7. 
White Paper  - New Strategy for Learning Disability in the 21st Century.  2002.  
8. 
Foundation for People with Learning Disabilities. How many people have 
learning disabilities? http://www.learningdisabilities.org.uk 2002; 
9. 
Lesley Stevens, Ian Rodin. Psychiatry: an illustrated colour text. Churchill 
Livingstone, 2001. 
10.  Emerson E, Azmi S, Hatton C, Caine A, Parrott R, Wolstenholme J. Is there an 
increased prevalence of severe learning disabilities among British Asians? 
Ethnicity & Health 1997;2:317-21. 
11.  Department of Health. Learning Disabilities. 
http://www.doh.gov.uk/learningdisabilities/facts.htm 2002; 
12.  Foundation for People with Learning Disabilities. Employment for people with 
learning disabilities. http://www.learningdisabilities.org.uk 2002; 
13.  ABC of Mental Health. BMJ Books, 1998. 
14.  B. K. Puri, P. J. Laking, I. H. Treasaden. Textbook of Psychiatry. Churchill 
LIvingstone, 1996. 
15.  National Autistic Society. Autism and Asperger Syndrome. http://www.nas.org.uk 
2002; 
16.  Fombonne E. The epidemiology of autism: a review. Psychological Medicine 
1999;29:769-86. 
17.  Jacobson JL, Jacobson AM. Psychiatric Secrets. Hanley & Belfus, 2001. 
18.  Korkmaz B. Infantile autism: adult outcome. Seminars in Clinical 
Neuropsychiatry 2000;5:164-70. 
19.  The Down's Syndrome Association. Down's Syndrome. http://www.dsa-uk.com 
2002; 
20.  National Down's Syndrome Society. http://www.ndss.org/main.html  2002.  
21.  The National Institute for Child Health and Development. Fragile X Syndrome. 
http://www.nichd.nih.gov 2002; 
22.  National Institute of Child Health and Human Development. Facts About Fragile 
X Syndrome. http://www.nichd.nih.gov/publications/pubs/sub2.htm  2002.  
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23.  Victoria State Government, Australia. Fragile X Syndrome Fact Sheets for 
Health Professionals. http://hnb.ffh.vic.gov.au/commcare/yafs_yf.nsf 2002.  
24.  The Royal College of Psychiatrists. Mental Health and Growing Up Second 
Edition. Attention Deficit Disorder and Hyperactivity.  2002.  
25.  McCann BS, Roy-Byrne P. Attention-deficit/hyperactivity disorder and learning 
disabilities in adults. Seminars in Clinical Neuropsychiatry 2000;5:191-7. 
26.  Cosgrove P.V.F. Attention Deficit Hyperactivity Disorder A UK Review. Primary 
Care Psychiatry 1997;3:101-13. 
27.  Anonymous. British National Formulary. British Medical Association and Royal 
Pharmaceutical Society of Great Britain, 2001. 
28.  Kewley GD. Personal paper: attention deficit hyperactivity disorder is 
underdiagnosed and undertreated in Britain. BMJ 1998;316:1594-6. 
29.  Department for Education and Skills. Special Educational Needs in England 
2001. http://www.dfes.gov.uk/statistics/DB/SBU/b0301/sb12-2001.pdf 
30.  Foundation for People with Learning Disabilities. Older people with learning 
disabilities. http://www.learningdisabilities.org.uk 2002; 
31.  Brylewski J. Antipsychotic medication for challenging behaviour in people with 
learning disability. Cochrane Database of Systematic Reviews 2002;Issue 1, 
2002.
 
32.  Holland AJ. Ageing and learning disability. British Journal of Psychiatry 
2000;176:26-31. 
33.  Medical Services. Incapacity Benefit Handbook for Approved Doctors. 2000. 
34.  Hope RA, Longmore JM, McManus SK, Wood-Allum CA. Oxford Handbook of 
Clinical Medicine. Oxford University Press, 1998. 
35.  The Oxford Textbook of Medicine on CD ROM. Oxford University Press, 1996. 
36.  Rett’s Disorder http://www.psychnet-uk.com/dsm_iv/retts_disorder.htm 2002. 
37.  Niemann-Pick Disease http://www.niemann-pick.freeserve.co.uk/description.htm 2002.  
38.  Tuberous Sclerosis Association. http://www.tuberous-sclerosis.org2002. 
 
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