Learning Guide
Intellectual
disability and
support needs
16870 Describe intellectual disability and support needs of
a person with an intellectual disability in a health or
wellbeing setting
Name:
Workplace:
Issue 3.0
Level 3
4 credits
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Contents
Introduction ............................................................................................................................. 1
What is intellectual disability? ................................................................................................. 2
The New Zealand Disability Strategy ....................................................................................... 3
The Disability Survey ................................................................................................................ 4
Definitions of intellectual disability ......................................................................................... 5
The causes of intellectual disability ......................................................................................... 7
Causes before birth ............................................................................................................. 7
Causes during birth .............................................................................................................. 9
Causes during childhood ................................................................................................... 12
Support needs ........................................................................................................................ 14
Associated conditions ........................................................................................................ 15
Autism spectrum disorder ..................................................................................................... 18
Characteristics ................................................................................................................... 18
Support needs .................................................................................................................... 19
Cerebral palsy ........................................................................................................................ 20
Characteristics ................................................................................................................... 20
Support needs .................................................................................................................... 21
Down syndrome ..................................................................................................................... 22
Characteristics ................................................................................................................... 22
Support needs .................................................................................................................... 22
Spina bifida ............................................................................................................................ 23
Characteristics ................................................................................................................... 23
Support needs .................................................................................................................... 23
Prader-Willi syndrome ........................................................................................................... 24
Characteristics ................................................................................................................... 24
Support needs .................................................................................................................... 24
Epilepsy .................................................................................................................................. 25
Characteristics ................................................................................................................... 25
Support needs .................................................................................................................... 25
Foetal alcohol syndrome ....................................................................................................... 26
Characteristics ................................................................................................................... 26
Support needs .................................................................................................................... 26
Intellectual disability and support needs (US 16870) Learning Guide © Careerforce – Issue 3.0 | July 2015
Intellectual disability and support needs (US 16870) Learning Guide © Careerforce – Issue 3.0 | July 2015
Introduction
A person living with an intellectual disability has the same needs as
everyone else in the community. When you are supporting a person
with an intellectual disability you will need to understand their
disability, their abilities and their individual needs.
How to use your learning guide
This guide supports your learning and prepares you for the unit
standard assessment. The activities should be used as a general guide
for learning.
This guide relates to the following unit standard:
 16870 Describe intellectual disability and support needs of a person
with an intellectual disability in a health or wellbeing setting (level 3,
4 credits).
This guide is yours to keep. Make it your own by writing notes that help
you remember things, or where you need to find more information.
Follow the tips in the notes column.
You may use highlight pens to show important information and ideas,
and think about how this information applies to your work.
You might find it helpful to talk to colleagues or your supervisor.
Finish this learning guide before you start on the assessment.
What you will learn
This topic will help you to:
 understand the causes and effects of intellectual disabilities.
 recognise how intellectual disabilities affect daily living.
 support people with intellectual disabilities.
What you will need
To complete this topic, you will need:
 this learning guide.
 your trainee assessment for this topic.
 forms from your workplace, such as:
 personal plans.
 observation forms.
 the people you support.
 you!
Intellectual disability and support needs (US 16870) Learning Guide © Careerforce – Issue 3.0 | July 2015
More info
If you have a trainer,
they should give you
all the forms that you
need for this topic.
1
What is intellectual disability?
Intelligence refers to general mental capacity, such as learning,
reasoning, making decisions, problem solving, and so on. Intelligence is
measured by an intelligence quotient (IQ) test. The average IQ is 100. A
person is considered intellectually disabled if they have an IQ below the
70 to 75 range.
Disability is not something individuals have. What individuals have are
impairments - a limitation to the way a person is able to function.
Limitations to intellectual or cognitive functioning affects thinking and
processing skills, like solving problems, understanding instructions,
reasoning, analysing and evaluating information.
There are several definitions of what an intellectual disability (ID) is.
Each of them is written by different organisations in different parts of
the world. Each of them says that:

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intellectual disability has its onset (beginning) in the
early/developmental years and is a life-long condition that cannot
be cured.
people with an intellectual disability find it more difficult to learn
and understand than people without an intellectual disability. They
are just a little slower than average to learn new information or
skills.
people with an intellectual disability may find it hard to use what
they have learned in practical ways. This is referred to as having
difficulty with ‘adaptive behaviour’.
Adaptive behaviour or adaptive functioning are the life skills that people
learn, so that they can function in a safe and socially responsible
manner in their everyday lives. Because of this, people with an
intellectual disability are likely to need help and support with everyday
living skills. Some people may need high levels of support, while other
people, with some support, are able to live quite independently.
Life skills
People with an intellectual
disability are likely to need help
and support with everyday
living skills.
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The New Zealand Disability Strategy
The New Zealand Disability Strategy is vital to the wellbeing of the
almost one-in-four New Zealanders who identify that they have a longterm impairment.
The Disability Strategy provides a framework to guide government
agencies making policy and services impacting on disabled people. It has
a vision and presents a long-term plan for changing New Zealand from a
disabling to an inclusive society. It has been developed in consultation
with disabled people and the wider disability sector, and reflects many
individuals' experiences of disability.
The way that disability is perceived has changed over the years.
Intellectual disability was once called mental retardation.
Disability, for most of the 20th Century, was considered in the medical
model concept. This model assumes medical care and management of
the condition is required, with disability being ‘something wrong’ and
that had to be ‘fixed’. This ‘fix’ was often residential accommodation
where the special needs of the person could be met alongside others
with similar needs.
The prevailing model is the social model of disability, as has been
adopted in the New Zealand Disability Strategy. This view is that
disabled people are unable to fully participate in society because of
limitations placed upon them by society systems.
New Zealand will be inclusive when people with impairments can say
they live in:
'A society that highly values our lives and continually enhances our full
participation.'
Disabled people will be integrated into community life on their own
terms, their abilities will be valued, their diversity and interdependence
will be recognised, and their human rights will be protected. Achieving
this vision will also involve recognising the principles of the Treaty of
Waitangi.
New Zealand Disability Strategy is available for reading online or for
downloading. www.odi.govt.nz/resources/publications/new-zealanddisability-strategy.html
The Disability Strategy is also available in an easy read version, a
pictorial version, an audio version, a braille version and a video in New
Zealand Sign language.
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The Disability Survey
The Disability Survey is a national survey of children and adults and is
the most comprehensive source of data on disabled people living in
New Zealand. It provides information on the needs of disabled people
and the nature of their impairments. In 2013 1.1 million New Zealanders
identified as living with a disability and the survey allows these people
to have their voices heard.
The survey collects information about both disabled people and people
who do not have a disability. Disabled and non-disabled people are
interviewed, and adults living in residential facilities are also
interviewed.
The information helps us know:
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how many disabled people live in New Zealand.
what kinds of disabilities people have.
how people became disabled.
what kind of support and how much support people need.
Information collected includes the nature, cause and duration of
impairments. The survey also looks at issues such as human rights,
social attitudes, education and employment, recreation and lifestyle,
public services, and support systems.
Results from the 2013 New Zealand Disability Survey showed that:
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the most common disability type for adults were physical
disabilities.
diseases or illnesses were the most common cause of disability for
adults, followed by accidents or injuries, and ageing.
the most common type of accident or injury causing disability was
one that occurred at work.
just over half of all disabled people (53%) had more than one type of
impairment.
the most common causes of disability for children existed at birth,
and 52% of these children had difficulty learning.
the percentage of people with disability increased with age, from
11% for children under 15 years old, to 59% for adults aged 65 years
and over.
Māori and Pacific people had higher-than-average disability rates.
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Definitions of intellectual disability
Different organisations in different parts of the world define intellectual
disability differently. The common underlying ideas are the same.
The United Nations Convention on the Rights of Persons with
Disabilities, Article 1 states: ‘Persons with disabilities include those who
have long-term physical, mental, intellectual or sensory impairments
which in interaction with various barriers may hinder their full and
effective participation in society on an equal basis with others.’
www.un.org/disabilities/convention/conventionfull.shtml
World Health Organization
‘Intellectual disability means a significantly reduced ability to
understand new or complex information and to learn and apply new
skills (impaired intelligence). This results in a reduced ability to cope
independently (impaired social functioning), and begins before
adulthood, with a lasting effect on development.
Disability depends not only on a child’s health conditions or impairments
but also and crucially on the extent to which environmental factors
support the child’s full participation and inclusion in society.
The use of the term intellectual disability in the context of the WHO
initiative “Better health, better lives” includes children with autism who
have intellectual impairments. It also encompasses children who have
been placed in institutions because of perceived disabilities or family
rejection and who consequently acquire developmental delays and
psychological problems.’
http://www.euro.who.int/en/health-topics/noncommunicablediseases/mental-health/news/news/2010/15/childrens-right-to-familylife/definition-intellectual-disability
The American Association on Intellectual and Developmental Disabilities
(AAIDD) definition focuses on rehabilitation.
‘Intellectual disability is a disability characterised by significant
limitations in both intellectual functioning and in adaptive behaviour,
which covers many everyday social and practical skills.’
http://aaidd.org/intellectual-disability/definition
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The American Psychiatric Association (APA) publishes the Diagnostic
and Statistical Manual of Mental Disorders (DSM), used for diagnosis
purposes. The fifth edition, DSM-5, revises the previous editions’
definition of intellectual disability. www.dsm5.org/
‘Intellectual disability involves impairments of general mental abilities
that impact adaptive functioning in three domains, or areas. These
domains determine how well an individual copes with everyday tasks:

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the conceptual domain includes skills in language, reading, writing,
maths, reasoning, knowledge, and memory.
the social domain refers to empathy, social judgment, interpersonal
communication skills, the ability to make and retain friendships, and
similar capacities.
the practical domain centres on self-management in areas such as
personal care, job responsibilities, money management, recreation,
and organizing school and work tasks.’
The International Classification of Functioning, Disability and Health
(ICF) defines disability as ‘an umbrella term for impairment, activity
limitations and participation restrictions. Disability is the interaction
between individuals with a health condition, eg cerebral palsy, down
syndrome and depression, and personal and environmental factors, eg
negative attitudes, inaccessible transportation and public buildings, and
limited social supports.’
www.who.int/mediacentre/factsheets/fs352/en/
The New Zealand Ministry of Health’s definition of disability determines
who is eligible for the range of disability support services they fund, ie,
‘a person with a disability is someone who has been assessed as having
a physical, intellectual or sensory disability (or a combination of these)
that is likely to continue for a minimum of six months and result in a
reduction of independent function to the extent that ongoing support is
required.’
As a person moves through different stages of their life, they will need
different support. Often the biggest challenge can be trying to find out
what is available and getting support in place.
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The causes of intellectual disability
Intellectual disability can be caused by a number of factors, either
before birth, during or immediately following birth, or in childhood. In
some cases the cause is known, but in nearly half of the cases the cause
of the intellectual disability is unknown.
Causes before birth
An intellectual disability can be caused before a child is born, because of
genetic factors, chromosomal factors or other factors.
Genetic/hereditary factors
‘Genetic’ means that the condition is
passed down from parents to a baby. A
healthy person with no symptoms may
be a carrier of genetic information that
may result in their children having an
intellectual disability. For example, cystic
fibrosis, where most often the parents
each carry one copy of the altered gene
but do not show signs and symptoms of
the disorder. It is thought that spina
bifida and autism may also have a
genetic link.
Chromosomal factors
Any change in the normal structure or
number of chromosomes can result in
intellectual disability. For example,
Prader-Willi syndrome and Down
syndrome – neither of these are usually
inherited from parents.
Other factors
Other factors such as trauma, poisoning,
or a serious illness while the mother is
pregnant can cause an intellectual
disability. For example, foetal alcohol
syndrome is caused by drinking alcohol
during pregnancy, which can affect the
foetus at critical stages of development.
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Write
For each of these three causes, record the main characteristics of the
possible effects on a baby before birth.
Cause
Main characteristics of the possible effects
Chromosomal
Genetic
Other
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Causes during birth
Intellectual disability can be caused during or immediately after birth.
There are a number of ways that this can occur. These include:

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premature birth.
prolonged labour.
trauma.
a lack of oxygen (known as asphyxia or anoxia).
multiple births.
The impact of the disability on the baby will be different for each,
depending on the severity of the damage.
Causes during birth
A child may be born with an
intellectual disability.
Short term effects for the baby
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Minimum physical contact due to incubation.
The lack of oxygen to the brain means a baby requires support with
oxygen.
Inability to suck means a baby requires tube feeding and
intravenous support.
Inability to regulate body temperature means a baby will need
support to
maintain body temperature.
These all require intervention if the baby is to survive.
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Characteristics
Babies whose intellectual disabilities are caused during birth may have
some of the following characteristic:
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informed lungs and/or heart.
difficulty feeding (sucking).
inability to regulate body temperature.
a bluish tint to their skin due to breathing problems.
small size and low birth weight.
being tired and distressed.
showing difficulty in responding to stimuli.
blue lips and pale skin.
shallow breathing.
poor muscle tone.
tissue damage (swelling, bruising, bleeding).
Possible long term effects
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Significant below average intelligence often leads to difficulties in
reasoning, thinking, learning new skills and tasks, memory,
understanding, concentration, literacy and numeracy.
Shortcomings in everyday life skills such as physical activities of daily
living, dressing, washing, toileting and tying shoelaces.
Significant development delays of:
 gross motor skills - sitting, walking, crawling, running, jumping.
 fine motor skills - picking things up, and coordination.
 communication - understanding others, and communicating
needs.
 social - sharing and playing, taking turns, understanding rules.
Overall this may result in brain damage, failure to thrive, and sensory
difficulties (hearing and visual problems).
Developmental delays
There may be shortcomings in
everyday life skills.
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Write
Choose two possible causes of an intellectual disability during birth.
Record the main characteristics of the cause and its possible effects on
a baby.
Cause one:
Main characteristics
Effect on baby
Cause two:
Main characteristics
Effect on baby
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Causes during childhood
Intellectual disability can also occur in the developmental years of a
child’s growth. AAIDD defines this as before the age of 18.
Some of the factors that may cause intellectual disability during
childhood are listed below, though these do not always result in an
intellectual disability:
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head injuries from accidents and falls.
brain tumours.
illnesses such as meningitis, or encephalitis which can damage the
brain.
severe allergic reactions or poisoning.
severe malnutrition, which can stop the brain from developing (if it
occurs at critical periods).
Sometimes when the cause of the disability is not known it is referred to
as ‘general developmental delay’ or as ‘intellectual disability’.
The impact of the disability on the child will be different for each
individual, depending on the severity of the impairment and the age
that it occurred. Some of the support needs might include:
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re-teaching skills that the child had already developed but has lost
as a result of their illness/trauma.
adapting skills to accommodate the child’s changed level of ability.
For example, teaching a new way of communicating if speech has
been lost.
adapting resources and aids that the child requires.
providing extra support for the child to learn concepts.
providing extra support in encouraging social interaction and
development.
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Write
Choose two possible causes of an intellectual disability during
childhood. Record the main characteristics of the cause and the impact
of these on the day-to-day support needs of a person.
Cause one:
Main characteristics
Impact on support needs
Cause two:
Main characteristics
Impact on support needs
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Support needs
More important than knowing the cause of the disability is knowing
how the disability impacts on each individual person, and how to
support them in the best way.
A person who has an intellectual disability will need ongoing support
throughout their life. The support a person requires will change as the
person develops from childhood into adulthood.
As a person moves through different stages of their life, they will need
different support. Often the biggest challenge can be trying to find out
what is available and getting support in place.
The support for a person with an intellectual disability must be holistic,
person-centred and take into account the person’s strengths.
The most important support is to enable the person to participate in the
ordinary aspects of life that people without an intellectual disability
sometimes take for granted.
These are the most important factors for the person:
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to have friends.
to go places.
to go to school/get a job.
to have a home with people they chose to live with.
to communicate with others.
Support areas you may be involved in include:


activities of daily living (ADL), which are basic self-care tasks.
instrumental activities of daily living (IADL) requiring more complex
skills, like preparing meals.
There are also many resources in the community that can support
people with a disability. You should make yourself aware of these
supports.
Cooking together
Support may be needed for more
complex tasks, like preparing meals.
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Associated conditions
There are many health and medical conditions that are associated with
intellectual disability.
’Associated’ means that a person who has this condition is more likely
to also have an intellectual disability.
Some of the conditions are always associated with intellectual disability.
Some of the people with these conditions may not have an intellectual
disability.
A person with an intellectual disability may have specific support needs
related to their particular condition. These associated conditions can
include the following.
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Down syndrome.
Autism spectrum disorder.
Cerebral palsy.
Spina bifida.
Prader-Willi syndrome.
Epilepsy.
Foetal alcohol syndrome.
There are a wide variety of needs that a person may benefit from
support in.
These could include physical, social, and cognitive support needs,
among other things.
When you are supporting a person with a disability, they will have a
detailed personal plan which you will need to follow closely. You may
need specific training for the support you are required to give. You must
work within the boundaries that your organisation specifies.
Daily living
Support may be needed for
daily living.
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Write
Think about a person you currently support. How do you support the
physical, cognitive and social needs of the person? Provide some
examples.
Physical supports
Cognitive supports
Social supports
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Autism spectrum disorder
The exact cause of autism spectrum disorder (ASD) is not known, but
there appears to be a genetic link. The parents may not have ASD, but
the combination of the parents’ genes may have an impact.
ASD is a neurological condition and is related to the brain having
difficulty in making sense of the information that comes into it, which
leads to the characteristics which are commonly seen in ASD.
Characteristics
ASD is a relatively new term that covers a group of conditions (including
autism, Asperger’s syndrome, and pervasive developmental disorder)
which have key aspects in common. Everyone who is diagnosed with
ASD shares three sets of characteristics:
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difficulty in understanding and using verbal and non-verbal
communication in a typical way.
impairment in the ability to understand social behaviour, which
affects their ability to interact with other people.
impairment in the ability to think and behave flexibly which may be
shown in restricted, obsessional or repetitive activities.
Difficulty communicating
Some examples of this are:

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some people with ASD do not learn to speak.
some people with ASD may use an odd accent or unusual grammar.
some people with ASD might repeat words or phrases (echolalia).
Difficulty interacting
Some examples of this are:
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difficulty in reading other people’s facial expressions.
difficulty in understanding and making sense of social ‘rules’, such as
not interrupting, turn taking or what subjects to talk about.
for some people understanding the ‘social world’ is so challenging
that they avoid it and become very isolated.
Difficulty thinking or behaving flexibly
Some examples of this are:

many people with ASD have difficulty making sense of changes
because they are not always good at recognising what impact the
change will have. This is stressful for them. For example, a change in
support worker at the last minute can make them uncertain of what
to expect because they cannot think flexibly enough to know what
the outcome will be.
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wanting to keep things the same, such as routines, support workers,
meals, clothes, or the route to drive to work. People with ASD have
difficulties with change and often prefer to keep things predictable
so they know what to expect.
doing repetitive activities such as lining up items, talking about a
special topic a lot, or collecting things - to create some control or
predictability, when everything around them seems unpredictable.
Sensory difficulties
Many people with ASD also have some sensory difficulties, meaning
that they can be either oversensitive or under sensitive to some sensory
stimuli. This includes hearing, vision, smell, touch, taste, balance and
awareness of body movements. For example, a person with ASD may be
very sensitive to loud noises and find them hard to cope with, and
another person with ASD may particularly enjoy a smell and seek that
smell.
Although these features are characteristic of all people with ASD, there
is a range of severity. Some people with ASD have an intellectual
disability, but not all. There are also people who have only some of the
characteristics, and may be referred to as having ‘features of ASD’.
Support needs
Physical support
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Maintaining an environment that meets the sensory needs of the
individual, including avoiding troublesome sensory experiences.
Support with daily living skills as needed - different for each person.
Occupational therapy related to difficulties with coordination and
daily living skills if appropriate.
Relaxation and stress management.
Cognitive support
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Structured and logical approaches to teaching/learning concepts
and skills.
Use of visual strategies to support learning as appropriate.
Communication support (including speech and language therapy) to
develop communication skills as appropriate.
Maintaining predictable routines.
Informing of change in ways that make sense to the person.
Social support
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Aiding the learning of social rules in logical ways.
Making opportunities to develop and maintain friendships.
Offering specific advice and guidance about social interactions.
Allowing time away from stressful social situations as required.
Making time for relaxation.
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Cerebral palsy
Cerebral palsy is caused by damage to one or more specific areas of the
brain, usually occurring while a foetus is developing, or, during birth or,
shortly following birth or, in infancy.
Cerebral palsy describes a group of specific conditions which affect
movement and posture. ‘Cerebral’ refers to the brain and ‘palsy’ to
muscle weakness and poor control.
A person with cerebral palsy has damage to areas of the motor areas of
the brain, which control movement. This results in permanent difficulty
sending messages from the brain to control different muscles.
The type of cerebral palsy will depend on the area of the brain damaged
and can cause mild impairment (such as difficulty walking) through to
significant impairment requiring a high level of support and assistance
with mobility.
Characteristics
A characteristic of a cerebral palsy is a person may experience weak and
stiff muscles or uncontrolled movements. Movements may appear stiff
and jerky because the muscles are contracted and tense, even though
they are weak. ‘Spasticity’ describes the tone of muscles or how tight
they are. Coordination may be affected which can result in problems
with balance and coordinating movement.
People with cerebral palsy can have problems such as weakness,
stiffness, muscles spasms, unwanted muscle movements, floppiness, an
awkwardness of movement, slowness, shakiness and difficulty with
balance.
In mild cerebral palsy, the person may be slightly affected in one arm or
leg and the problem may be barely noticeable.
Cerebral palsy can affect the way a person walks, for example, on their
toes, with an unsteady or ‘scissored’ gait, or dragging one leg.
When the effects of cerebral palsy are more severe the person may
have a lot of difficulties, with the whole body affected. For example,
some people with cerebral palsy will have difficulty talking, walking or
using their hands. Some will be unable to sit up without support and will
require help to do most everyday tasks.
Some people with cerebral palsy have an intellectual disability, but not
all.
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Support needs
Physical support
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Physiotherapy related to mobility, muscle spasms, coordination
difficulties.
Support with physical and daily living activities depending on the
level of decreased mobility. For example, assist with dressing and
grooming.
Possible use of a wheelchair, or other physical aids such as eating
utensils.
Environmental adaptations such as shower rails, ramps. An
occupational therapist will help with this.
Specialist medical intervention if medical problems exist.
Cognitive support
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Individualised support with learning and education depending on
the need.
Possible speech and language therapy to develop language and
clarity of speech, as required.
Communication may require patience, and possibly use of
communication aids.
Technology and aids to assist learning if writing and other physical
tasks related to learning are difficult.
Social support
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Assisting with community access and transportation as required.
Facilitating opportunities for friendships as required.
Taking opportunities to discuss disability issues.
Code of Rights
Knowing one’s rights is important.
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Down syndrome
Down syndrome is caused by a chromosomal factor, giving a third copy
of chromosome 21 inside each of the body’s cells, instead of the usual
two copies. Down syndrome is recognisable at birth because of typical
physical characteristics and diagnosis will be confirmed by chromosome
analysis.
Characteristics
Many characteristics are attributed to Down syndrome, but any one
person will only have some of them as each person is different, with a
unique appearance, personality and set of abilities. The extent to which
a person shows the physical characteristics of the syndrome is no
indication of their intellectual capacity. Usual characteristics are:
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intellectual disability - delays in learning and development.
characteristic facial features - but each person also closely
resembles their parents and family.
low muscle tone.
increased risk of heart defects.
digestive problems such as reflux.
hearing loss.
reduced activity of the thyroid gland (hyperthyroidism).
increased risk of early onset of Alzheimer’s Disease.
Support needs
Physical supports
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Physiotherapy and occupational therapy related to muscle tone,
movement and co-ordination.
Speech and language therapy to help with speech clarity, language
development, comprehension and communication strategies.
Medical support to monitor/manage health problems, eg reflux.
Regular exercise.
Support and aids for hearing impairment as required.
Support with physical tasks such as dressing, and daily living skills.
Cognitive supports
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More time to learn new things, such as skills, concepts.
Targeted teaching plans.
Additional supports may be required at school, such as teacher aid.
Social supports
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Facilitating opportunities to build and maintain friendships.
Support with accessing community activities.
Finding and holding a meaningful job.
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Spina bifida
Spina bifida occurs in the first six weeks of pregnancy when the spinal
column doesn’t close completely. The exact cause is unknown but it is
believed that genetics and some environmental factors may play a role.
Spina bifida is a physical disability. Most people with spina bifida do not
have an intellectual disability. Some people with spina bifida may have
difficulty with some specific aspects of learning, such as reasoning and
problem solving, organisation, sequencing skills, or memory.
Characteristics
The effects of spina bifida are different for every person. The effects can
include:
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full or partial paralysis, requiring some mobility aids.
bladder and bowel control difficulties and urinary tract infections.
orthopaedic difficulties.
loss of sensation which can make it difficult to recognise pressure,
friction, or temperature changes.
neurological problems, which can affect learning.
latex allergy.
hydrocephalus (or fluid on the brain). The person must have surgery
to insert a ‘shunt’ which stays in place for life and helps drain the
fluid. Care needs to be taken to avoid blockages, infections or
disconnection.
Support needs
Physical supports
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Specialist medical intervention related to hydrocephalus, mobility,
bladder and bowel, orthopaedic problems.
Support with physical activities depending on the level of decreased
mobility.
Possible use of a wheelchair or other physical aids.
Avoidance of latex (if allergy exists).
Environmental adaptations such as shower rails, ramps.
Cognitive supports
Learning support as appropriate for the individual - this will be different
for each person.
Social supports
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Community access and transportation as required.
Facilitating opportunities for friendships.
Opportunities to discuss disability issues.
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Prader-Willi syndrome
Prader-Willi syndrome (PWS) is a chromosomal condition caused by
changes in the 15th chromosome.
Characteristics
Prader-Willi syndrome has been described as a two-stage syndrome. In
the first, or ‘failure to thrive’ stage, weight gain is slow and
developmental milestones (both physical and intellectual) are delayed.
The baby tends to be ‘floppy’ due to low muscle tone.
The second stage, ‘thriving too well’ emerges as muscle tone improves.
There is a compulsion to eat and an obsession with food, usually
between the ages of two and four, but sometimes later. People with
PWS do not receive messages from their brain to tell them that they are
full, because the central nervous system is not functioning correctly.
They feel constantly hungry. Without environmental controls, serious
weight gain occurs in 95% of people with PWS.
Some other characteristics of Prader-Willi syndrome are:
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hypotonia (lack of muscle tone) in the young child.
hypogonadism (incomplete development of sexual characteristics).
intellectual disability (though this varies).
physical characteristics such as a narrow forehead, short stature as
adults, almond-shaped eyes, small hands and feet.
Support needs
Physical support
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Individualised weight management, with support from specialists.
Regular exercise.
Keep food locked away so that temptation is avoided. A person with
PWS can literally eat themselves to death.
Physiotherapy or occupational therapy as appropriate.
Cognitive support
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Educational support related to the person’s needs.
Regular meal routines so the person has some control over food.
Helping the person learn to manage their own diet as appropriate.
Social support
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Relaxation and fun that is not related to food.
Ensuring friends/family are consistent in their approach to food
when they are around the person.
Keeping busy and having interests so that there are plenty of
distractions.
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Epilepsy
Epilepsy is caused by damage to the brain and it can occur following a
head injury or stroke. People with intellectual disabilities can be more at
risk of developing epilepsy. In some cases epilepsy and intellectual
disabilities can both be a part of another condition. People with Down
syndrome are at an increased risk of developing epilepsy in later life.
Characteristics
A person with epilepsy has recurrent seizures. A seizure is the result of a
sudden burst of excess electrical activity in the brain which causes
messages within the brain to become temporarily halted or mixed up.
The type of seizure a person has depends on the area of the brain
where this activity occurs. There are around 40 different types of
seizure and a person may have more than one type. These range from
brief absent moments, to episodes of losing consciousness, falling to the
floor and convulsing. The person may or may not be conscious of a
seizure.
Epilepsy can be life-threatening and people with epilepsy have an
increased risk of accidental death, for example, by drowning. Most
people with epilepsy are able to manage their condition with
medication, and most lead an ordinary life.
Support needs
Physical support
Everyone you support with epilepsy will have a support plan, which you
must be confident in carrying out. It will include things such as:
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a medication regime.
an explanation understanding what can trigger a seizure.
details of how to keep the person safe when having a seizure.
first aid procedures.
when to call for an ambulance.
instructions about how to support the person after their seizure.
Cognitive support
The person may miss learning opportunities while having or recovering
from a seizure and may need to catch up. In severe cases epilepsy may
impact on the person’s ability to learn and they may benefit from
specialist support such as extra help at school, memory aids, visual aids.
Social support
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Know how to protect the person’s dignity if they have a seizure.
Support the person to feel confident and capable.
Intellectual disability and support needs (US 16870) Learning Guide © Careerforce – Issue 3.0 | July 2015
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Foetal alcohol syndrome
Foetal alcohol syndrome (FAS) is caused by a woman drinking during
pregnancy, affecting the way a baby develops, physically and mentally.
Alcohol can prevent enough nutrition and oxygen from getting to the
foetus’ vital organs. Babies will be born with foetal alcohol spectrum
disorders, ranging from mild to severe. FAS is a severe form.
Characteristics
FAS is characterised by a pattern of facial abnormalities, central nervous
system damage and stunted growth. It is a commonly known cause of
mental retardation, and creates lifelong developmental disabilities.
A person with FAS may have problems with their vision, hearing,
memory, attention span, and abilities to learn and communicate. Simple
rules to follow, regular routine and rewards for good behaviour all help.
Support needs
Physical support
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Impaired fine motor skills, poor gait, clumsiness and lack of
coordination may mean the person requires some physical support.
Cognitive support
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Learning difficulties may require support such as speech therapist
for language development and training to improve skills in
reasoning, self-control and understanding cause and effect.
Social support
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Outgoing and engaging, they can be seen as hyperactive, overlytalkative, with poor social judgement and socialisation skills. They
may need support with social skills for making friends.
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Write
Choose one health or medical condition associated with an intellectual
disability. Complete the table for the condition you have chosen.
Condition:
Cause
Characteristics (at least two)
Support needs
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Physical
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Social
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Cognitive
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Other
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