Learning Disabilities Awareness Presentation

Presented by
Maureen Major
Health Facilitator
Explore the meaning of the term learning
Review the causes of learning disabilities
Look at some of the specific health needs
associated with learning disabilities
Support ways of working with people
whom have a learning disability
Learning Disability
Learning disability is the term preferred by
health organisations to describe:
A significantly reduced ability to
understand new or complex information or
learn new skills (impaired intelligence) with
A reduced ability to cope independently
(social function)
Learning Disability
Which started before adulthood, with a
lasting effect on development. (Valuing
People 2001)
Degrees of Learning Disability
IQ - range 50-69 (accounts for 89% of
people with a learning disability).
Often not diagnosed until a latter age.
Usually slow in achieving milestones.
May have required special education
Often live & work independently in the
community. May not easily be identifiable.
Moderate Learning Disability
 IQ 35-49 (6% of the learning disability
 Noticeable delay in achieving milestones
 Will usually have gained basic mobility,
continence, communication and some self help
 May be able to achieve some independence in
familiar settings.
 May be able to carry out some semi skilled work
with supervision. Usually require some support
in managing everyday affairs.
Severe Learning Disability
 IQ 20-34 (accounts for 3.5% of all individuals
with a learning disability)
 Very slow in achieving milestones.
 May have additional physical disabilities.
 Help from specialist likely from an early age.
 Emphasis on functional, rather than academic
 Will need help and support with activities of daily
Profound Learning Disability
 IQ less than 20 (1.5% of all individuals with a
learning disability).
 Development progress very slow.
 Likely to have additional physical and sensory
 Almost certain to have involvement from
specialist services from birth.
 Health may be very frail.
 All basic needs are likely to be met by others.
 Emphasis on meaningful day time activities.
 Health and physical status likely to be a matter
of daily concern.
What is NOT a Learning Disability
 Problems with reading, writing or numeracy only.
 Emotional difficulties.
 Conditions like Attention Deficit Hyperactivity
disorder (ADHD)
 Aspergers syndrome and some individuals with
 However you can have a learning difficulty as
well as a learning disability.
Prevalence of Learning Disability
 National prevalence estimated at 2-3% of the
 Mild to moderate: 25 per 10000 of the population
(1.2 million people)
 Severe to profound 210,000
 65,000 of this number are children
 120,000 adults of working age and
 25,00 older people.
 A GP practice of 2,000 patients there will be an
average of 40 individuals with a learning
Causes of Learning Disability
 Prenatal – chromosome, genetics, toxins.
 Perinatal – Birth complications, infections.
 Post natal- infections or trauma.
 A learning disability will have started before
adulthood. After adult hood people may have
brain damage resulting in significant impairment
of both intelligence and social functioning, but
they are not considered to have a learning
disability, often referred to as having a brain
acquired injury.
Health needs
 26% of people with a learning disability are
admitted to general hospitals each year
compared to 14% of the general population.
 Mortality: People with learning disabilities are
56% more likely to die before the age of fifty.
 Cancer: The pattern of cancer is different in
Learning Disabilities, with lower rates of lung,
prostate and urinary tract cancers. There are
higher rates of oesophageal, stomach and gall
bladder cancers and leukaemia.
Health needs
 Helicobacter Pylori Infection: Endemic in the
learning disability population, postulated that the
higher than normal prevalence of this infection
leads to higher levels of gastric carcinoma.
 Congenital Heart Disease (CHD): 2nd most
common cause of death in LD- nearly 50% of
people with Down’s syndrome have CHD.
 Respiratory Disease: Most common cause of
death – rates 3 times higher than in the general
Health needs
 Sensory Impairments- common for individuals
to have a visual impairment and 40% of
individuals are likely to have a hearing
 Epilepsy: At 22% of the learning disability
population it is 20 times more common than in
the general population = 1%.
 SUDEP: Sudden Unexplained Death in epilepsy.
5% more common than in others without a
learning disability.
 (Hollins S, Attard M.T, Von Fraunhofer N, McGuigan S and Sedgwick
P (1998) Mortality in people with a learning disability: Risks, causes
and death certification findings in London, developmental medicine
and Child Neurology, 40-127-132)
Health needs
 Dementia: rates 4 times greater and early
onset in Down’s syndrome.
 Thyroid Function: greater risk of
 Mental Health: Schizophrenia is 3 times more
 Osteoporosis: often individuals have
substantially less bone density (important to look
at individuals (postural care)
Syndrome specific
 Fragile X Syndrome:
 Dilatation of aortic root, hypoplasia of the aorta and
mitral valve prolapse affect about one-third of all males,
and are responsible for high mortality rate.
 The nervous and urogentital systems are vulnerable to
 20% have epilepsy
 Joint laxity, awkward gait and flat feet are common
(ref: Howellls G Adults with learning disabilities a practical approach to care 1997)
Downs Syndrome
 Hearing loss affects more than 50% of people with
Downs syndrome (DS).
 Disorders of the eye, including blepharitis, errors of
refraction, squints, cataracts and poor visual
accommodation. Loss of interest in activities may
indicate visual impairment.
 Hypothyroidism: affects about 40% of adults with DS,
indicating the need for annual thyroid function checks.
 Congenital heart disease is 50 times more common than
in the general population.
 Often prone to periods of depression.
 Increase in prevalence to epilepsy in the fifth decade of
Downs Syndrome
People with DS show an accelarted aging
process, and may develop Alzheimer- like
Prader Willi Syndrome (PWS)
 PWS has an incidence of about 1: 10,000, and present
several medical challenges:
 Obesity: Begins in early childhood, characterised by:
Unusual inability to vomit, an insatiable appetite and a
reduced caloric requirement. Can lead scavenging in
bins, gardens exposing individuals to risk of poisoning.
High risk of developing diabetes.
 Behavioural difficulties, including obsessional behaviour.
 Skin picking, predispose individuals to infection and skin
 Dental problems are common.
 Altered responses to potentially painful
conditions such as ear infections or appendicitis,
yet in sharp contrast may be hypersensitive to
touch. These unusual responses make the
diagnostic process all the more difficult.
 Woman with PWS are infertile with hypoplastic
ovaries, with low oestrogen levels, and it might
be worth considering replacement therapy, to
support health presentation.
 Feeding, swallowing and nutritional problems have a
high prevalence among people with a learning
 This can have serious repercussions including poor
nutritional status, dehydration, aspiration and
asphyxiation. Which can be or lead to life threatening
 People with cerebral palsy and those with severe
intellectual and physical disabilities have a high
incidence of Dysphagia and patients with spastic
quadriparesis are at particular risk of aspiration.
 There is limited research into people with learning
disabilities who have Dysphagia, there is however
evidence that successful management decreases risk.
(National Patient Safety Agency 2004)
Dysphagia 2
 Carers need to have education to improve their
awareness of the symptoms of aspiration.
 As many as quarter of the respiratory disease deaths for
individuals with a learning disability can be directly linked
to aspiration pneumonia. (Community service Commission 200:
Disability, death and the responsibility of care. Sydney: New South Wales Community
Service Commission.
 36% of individuals in long stay hospitals had chewing
and/or swallowing problems. (Hickman J 1997 ALD and Dysphagia:
issues and practice. Speech and language Therapy in Practice Autumn 8-11
 60% of people with cerebral palsy (CP) have difficulties
with chewing and or swallowing. People with CP show a
deterioration in oral motor skills and Dysphagia in their
early 30’s.
Barriers to healthcare
 Automated multi-service telephone systems.
 Touch screen technology
 Physical barriers: e.g. Wheelchair
accessibility, waiting areas and access to
consultation rooms.
 Communication difficulties e.g. An inability to
describe symptoms clearly.
Barriers to healthcare
 The attitude of health care professionals, - e.g. Lack of
confidence, limited experience, negative attitudes and
 Recognition of ill health may be difficult or delayed
 Symptoms may not be easily identified: family
members/carers may not have the skills and knowledge
to support individuals to obtain health care or to maintain
health related behaviour. ‘Problematic’ symptoms (such
as aggression) may be brought to the attention of
services earlier, others that are equally significant (such
as withdrawal, loss of interest) may not.
Barriers to healthcare
 Poor historians.
 Reluctance by health care professionals to
consider and/or provide the same range of
treatment options because of
 (a) ‘Diagnostic overshadowing’ the inability to
see beyond the disability
 (b) perceived difficulty obtaining consent
 (c) assumptions and negative predictions about
how patients might react or cooperate.
Barriers to Healthcare
 Surgery involving complex rehabilitation may not
be considered as it is often assumed that
compliance will be a problem.
 Health problems may manifest in unusual
symptoms e.g. demonstrated by self injury.
 Lack of ability by the individual to recognise and
responding to their own changing health.
Reasons for not accessing health
 May be unaware of the health services
available to them.
 Might not understand the benefits of health
 May not understand consequences of their or
others decisions about their health.
 Poor health is associated with low socio
economic and poverty, which is a group that
many people with a learning disability may fall
 It is a general legal and ethical principle that valid
consent must be obtained before starting treatment or
physical investigations, or in the provision of personal
care to individuals.
 Omission to obtain consent can lead to legal action.
 Valid consent must be given voluntarily.
 The Mental Capacity Act 2005 (MCA) came into force
on 1 October 2007, providing a framework for making
decisions for people who lack capacity to make
decisions for themselves.
 The MCA defines a person who lacks capacity as a
person who is unable to make a decision for themselves
because of an impairment or disturbance in the
functioning of their mind or brain.
 Capacity is decision specific.
 Individuals are entitled to make what others may
perceive to be unwise or irrational decisions, as long as
they have the capacity to do.
 All practical steps should be taken to enable an
individual to make a decision themselves.
Best Interests
Must consider all relevant circumstances.
Must involve the individual
Have regard for the past and the present
Be in consultation with others who support the care of
the individual
 Should not be discriminatory.
Good Practice
 Develop Practice Specific development Plans that might
include the following:
 Identify a lead person within the practice to take special
interest in learning disabilities, collect information, be a
link with the health facilitator the Community Learning
Disability Team and advice others.
 Develop accessible leaflets in suitable formats.
 Support the teams awareness of learning disabilities,
with on going access to training and professional
 Work with the health facilitator in developing user groups
to provide individuals with a learning disability to
understand their own health.
 Offer preparatory visits.
Good Practice
 Develop with the health facilitator guidelines on
syndrome specific care pathways.
 Support and develop health education promotion to meet
the needs of the learning disability population.
 Allow extra time for appointments.
 Look at the environment: including the lighting, noise,
 Communicate: Speak with the individual, in a clear voice,
not too fast. Think about response time, it may take
longer for an individual to process information.
 Avoid jargon and abbreviations.
Good Practice
 Check that the person understands, use reflection, signs
and look for non verbal clues, a smile, a frown etc.
 Make sure you're conversation has a clear begining, a
middle and an end.
 Write as you speak.
 Use consistent words and phrases.
No one said it was going to be easy but:
By providing appropriate health care,
support and taking that extra time, you
really can make a difference to the
healthcare and therefore most other needs
of people with a learning disability
Good Luck on your journey, I am here to
help you ride the wave.
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