Download Deafblindness - School of Psychology and Human Development at

Kim Hodge
Advisory Teacher for DB/MSI Children
and Young People in Suffolk
wareness whole thing.ppt
Defining Deafblindness
• Persons are regarded as deafblind if they have a
severe degree of combined visual and auditory
impairment resulting in
• Problems with communication
• Problems with receiving and giving information
• Problems with mobility
• This group includes those deafblind from birth
(congenital)
• Those who develop dual impairment in later life
(acquired)
Relatively few people are profoundly
deaf and totally blind, the term dual
sensory impairment covers all
categories of combined visual and
hearing impairment
Remember
• Issues around
Communication
Accessing and Gaining Information
Mobility
Low incidence
• Until recently very few surveys into numbers of deafblind
individuals
• 1993 estimated 23,000 deafblind people in the UK
• Later studies confirm it is reasonable to assume 40
people per 100,000
• Incidence is much higher in those aged over 75
• Possibly 1in 6 in this group
• Half of all 80 year olds with a visual impairment also
have a hearing impairment
• Although a low incidence most professionals have little if
any experience of the complex nature and issues of
deafblindness
A Hidden Impairment
• Inadequate support to meet difficulties in communication
and mobility has meant many are unable to access their
community
• Most time is therefore spent in the home or in a
residential service
• Until recently distinctive difficulties associated with dual
sensory impairment have not been recognised
• Deafblindness can mask considerable unrealised
abilities, potential is hidden due to poor opportunities for
learning and low expectations
• Labelling - explain
Crucial impact of the age of onset
of Deafblindness
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There is a fundamental difference between someone
who has never seen or heard clearly and someone who
loses the ability after sharing an understanding of the
world and the ability to communicate.
Loss of independence
Loss of independent communication
Loss of access to information
A gradual loss may drag out the process of adjustment
Psychological effects
Emotional consequences
Impact on family friends and colleagues previously
accessed independently
Continued
• A distorted perception of the world
• Withdrawing, becoming isolated
The implication for those suffering sudden loss
• Loss of confidence
• Emotional stress and upheaval
• Loss of motivation
• Loss of independence and having to develop unique
learning styles
For further information see handout
Practical Exercise
Simulation of Deafblindness
Exercise
Deafblindness – Common
Causes (1 of 2)
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Congenital Rubella Syndrome
CHARGE
Usher I,2,3
Down Syndrome
Prematurity and/or cerebral palsy
Toxoplasmosis
This is x
Diagnosis of Usher Syndrome Type one
A Profound Bilateral Hearing loss
Bilaterally Cochlea Implanted at fourteen
months
Is using Speech and British Sign
• Photo – with permission
Pupil Information
• Pupil aged 22 months
• Nursery setting one day per week
• Intervenor service in nursery and in the home an
additional 1 day per week
• Family support worker from my team trained in visual
and hearing loss ( deaf herself ) works with family on
programme devised to stimulate vision and language
with xand follows up my work weekly, also supports xin
activities in the visual stimulation room at a local special
school
• Weekly QT - MSI support and VI support
• Speech and language support
• BSL user developing speech since cochlea implantation
X visual summary
• Has had numerous clinical tests and ERGs performed
locally at Addenbrookes and Moorefields.
• Hospital has used Cardiff cards, functional tests MRI, CT
scans etc
• Has a significant rod, cone dysfunction
• Functionally sees best when holds objects at about 5-10
cms
• Can fix and follow well with her eyes
• Marked right convergent squint
• Developing some right Amblyopia - patching ( occulsion
therapy) daily for half an hour
• Retinal dysfunction has been assessed as probably
causing significant deterioration in her visual function
including night blindness ( RP ) in the near future
• Is registered Severely Sight Impaired
• Has been Genetically tested
• Has undergone all tests enthusiastically and willingly
apart from visual field tests ( perimetry) - thus
discussion on this assessment procedure
• Due to the former statement xhas been part of trials for a
newly devised test – to be known as KidZeyeZ
• Understanding her visual deteriation is vital as she has
reduced ability to use audiological means and
maximising vision is essential prior to loss – for example
she is using sign language rapidly with useful vision we
can teach her these skills which can be converted to on
body signs as additional clues in the future if necessary
• Power point photo with permission
Deafblindness – Common
Causes (2 of 2)
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Age related
Accident / Trauma
Brain tumour
Stroke
Infections e.g. encephalitis
Communication
• Communication is the exchange of
information by any means possible
• Successful communication relies upon the
person sending their message being able
to convey meaning to another in a way
that is understood
• This implies both receptive and expressive
communication is used and understood
Communication
• Most people are brought up with one
communication system
• If a person become deafblind their system may
no longer be possible e.g. sign language ( e.g.)
• Reduction in information may effect the persons
ability to make informed decisions
• Not only does the deafblind person have to
adapt but also family and friends
Communication tactics
• Gain attention – approach from front
• Allow time for the person to become aware of
your presence
• Gently touch arm if necessary
• Introduce yourself
• With speech
• Finger spelling
• Signifier
• Through touch ( explain )
Development of Communication
Development of Social Interaction through
imitation
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Be available
Interaction is led by the deafblind person
Being responsive
Imitation in the person’s language
Development of turn-taking
Development of trust
Extend the activity
Understanding of the ability to affect change
Creating a Communicative
environment
• Communication with a familiar and trusted
person
• Involvement in everyday and motivating
activities
• Use appropriate methods of communication
• Allow for time to process information
• Development of routines
To encourage
• Repetition
development
• Consistency of approach
of anticipation
• Provide a reason to communicate
Typical Child Development
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Through interaction with parents/carers
Imitation
Eye contact
Vocalising
Turn taking
Audio-visual clues
Language/conversation
Incidental learning
Distance/exploration
Control over carer
Context of Typical Language
Development
• Interaction:
– With people
– With objects
• Daily Routines:
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Eating
Bathing
Dressing
Playing
• A Secure Environment:
– A safe environment
– A high level of attention from carers
Typical Language Development
• From birth:
– Bonding between carer and child, eye
contact, close contact.
– Carer responds to baby’s noises and
movements, eg crying, gurgling, body
movements
Typical Language Development
• First Year:
– Babies learn they can have some control over the
environment
– The adult begins to interpret the child’s
communication and attach meaning to it
– The adult begins to use more complex language
• Second Year:
– Child begins to use gesture, objects, first words and
simple phrases
– Thereafter, more complex language develops
MIS Child Development
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Limited eye contact
Limited hearing
Difficulty processing information
Problems with responding to carers’
communication signals
• Isolation
• Passive/aggressive behaviour may result
from a distorted perception
The Impact of Congenital
Deafblindness on Language
Development
• Bonding may be inhibited due to:
– Medical intervention
– Physical disability
• Physical disability
• Inability to make eye contact or respond to
voice
• Inability to understand the world around
• Initial inability to develop two-way
communication
• Socialisation may be inhibited due to:
– Reduced opportunities to interact with
people and objects
– Withdrawal from social contact
– Demotivation and isolation
– Inappropriate behaviour
– Learned helplessness/passivity
– Limited repertoire of communicative
behaviours and responses, eg stilling,
startling instead of holding hands,
vocalising
• Access to information is restricted due
to:
– Limited access to people, objects and
events
– Limited ability to learn through touch
– Information is distorted leading to problems
of processing
– Shared attention
Practical Exercise
Getting your message across !!!!!
Give it a go
You may not talk !!!!
Ways in which to Communicate
with a Deafblind person
List ideas and known methods – flip chart
Communication with Deafblind
People
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Speech
Sign language
Deafblind manual
Hand on Hand
Hand under hand
Body signs
Gesture
Objects of reference
Symbols / pictures/photos
Written word
Block
Braille
Moon
Communication aids
Summary of key factors influencing
communication
• The age or onset of Deafblindness
• Degree of deafblindness and use of residual
skills
• The lack of knowledge about the Deafblind
person
• Additional disabilities
• Experience
• Personal space issues / embarrassment/
• Life experiences
• Communication method prior to DB
Communication
• Practice deafblind manual in pairs
• Practice block in pairs
• Discuss Haptic Perception
Communication tactics
• Gain attention – approach from front
• Allow time for the person to become aware of
your presence
• Gently touch arm if necessary
• Introduce yourself
• With speech
• Finger spelling
• Signifier
• Through touch ( explain )
Creating a communicative
environment
• Communication with a trusted and familiar
person
• Involvement in everyday activities
• Use of appropriate methods of communication
• Allow TIME t PROCESS information
• Development of routines, repetition and
consistency of approach
• PROVIDE a reason to communicate
Practical Exercise
Practical exercise to simulate as best
possible
Section Seven Assessment
Section seven guidance under the 2002 health act
and updated in 2009 states….
i.e. it is not guidance it is a legal requirement says
Authorities have to
• Identify, make contact with and keep a record of
deafblind people in their catchment area
including those with multiple disabilities including
dual sensory impairment
• Carry out assessments by trained person, in
particular to access the needs for one to one
human contact , assistive technology and
rehabilitation
• Ensure they are able to access specifically
trained one to one support workers for those
people they assess as requiring one.
Making Sense of the World
• Our exploration of, understanding of and interactions
with: people, relationships, places, journeys, events
or objects, are experienced as a result of the complex
processing of a range of information gathered from
the available senses.
• As the breadth of information is received, it is
evaluated; the evaluation acted upon and the results
monitored.
• However, whilst key, response triggering information
may be received through only one of the senses –
the smell of gas, the sound of a scream or an
approaching lorry, the sight of a falling object – very
little of our understanding of, and response to, the
world is based merely on single sensory perception.
The following table gives us a reminder of the breadth
of sensory information sources that might contribute
to our understanding of, and response to, the world
Sense
Body Part
Function
Visual
Eyes
see
Auditory
Ears
Hear
Tactile
Skin
Touch; Pain; Heat
Olfactory
Nose
Smell
Gustatory
Mouth
Taste
Proprioceptio Muscles
n
Joints
Tendons
(all give information about)
Position; Movement
Space; Speed
Vestibular
(all give information about)
Balance; Speed
Ears
Receptors
in brain;
The Anatomy and Function of
Touch
• Information about touch is received
through sensory receptors in the skin, and
in joints, muscles and tendons
• In the inner layer of skin – the ‘dermis’ –
there are at least five different types of
nerve endings which respond to pressure
on the skin, to pain, to the movement of
hair and to changes in temperature.
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In very basic terms, the tactile/tactual
sensory signals are transmitted to the
spinal cord and then to the cortex of
the brain via two major pathways:
1. The MLS (medial lemniscal system)
which conveys signals about limb,
position, pressure and vibration
2. The ALS (anterolateral system) which
relays signals about possible ‘threats’ to
the body, including deep pressure,
temperature and pain.
• The language used to describe touch is
diverse. Touch is a series of sensations
which can be described as being either
‘Tactual’ (that is, touches given and received
through human/animal contact), or ‘Tactile’
(that is, touch cues from inanimate surfaces
that provide direction, activity and
confirmation).
• Information concerning size, shape, texture,
temperature and movement can be accessed
through touch. As has been suggested,
deafblind people may have a highly
developed sense of touch and there may be
some crude parallels which can be drawn
with a sighted person’s use of vision.
• Some people have very little heat or tactile
sensitivity. For others, this sensitivity can be
extreme to the point of pain.
• Some children and adults don’t like clothing;
others will pinch and scratch their skin.
• Touch differs from vision in that the tactile
equivalent of a visual impression cannot be
achieved in the tactile equivalent of a quick
‘glance’.
Taste (Gustatory Sense)
• The use of the sense of taste may be overlooked as
an important information gathering sense.
• The sense of taste is intricately connection to the
sense of touch and awareness of temperature (and
other characteristics such as texture) means that the
mouth provides a multitude of sensory information
from a single experience.
• Imagine eating freezer cold chocolate chip cookie
ice-cream. The single experience involves flavour,
consistency, texture and temperature.
• Bearing this in mind, it is noted here that difficulties
around eating are common in congenitally deafblind
children. The development of oral skills may include
toleration, acceptance, discrimination, recognition
and perhaps sensory desensitisation.
Smell (Olfactory Sense)
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The use of smell as a sensory source
of environmental information is often
overlooked.
Smell can be useful in three areas:
1. Firstly, where the smell of objects, people
or events are motivating to the person.
2. Secondly, where the smell can be
powerful in prompting information for
locating.
3. Thirdly, it can be used in association with
other sensory information to help
distinguish or confirm information.
• Smell is a sense, which is often used
alongside the sense of taste, for example in
the identification of food.
However, smell can be used in other ways.
• Particular scents can be associated with an
environment, a particular room or with the
identification of both people and things.
• As with the other senses, smell can be a
powerful stimulant of memory and is therefore
emotionally significant.
• Smell is also a distance sense bringing us
information about our environment in a way
that is different to the other senses.
Vestibular Sense
• The Vestibular system refers to the structures
of the inner ear that detect movement and
changes in the position of the head. For
example, the vestibular system tells you when
your head is upright or tilted. If this function in
the inner ear isn’t working correctly, a person
may be apprehensive about changing
surfaces, height or coping with climbing or
descending. For some people it may result in
them actively seeking intense sensory
experiences, such as self stimulatory
behaviour.
Proprioception
• The proprioceptive system refers to the
components of muscles, joints and tendons
that provide a person with subconscious
awareness of body position. When this
position is functioning well it is responsible for
providing the body with signals to allow us to
do things such as sit properly in a chair, judge
the weight of an object we are lifting, step off
the curb smoothly, use a spoon or button a
shift.
Conclusion
• In relation to deafblindness, the use of
the different senses as sources of
information cannot be looked at as
individual components, but rather as
integrating parts of a whole. What that
means will be different for different
people.
The Impact of Congenital
Deafblindness on Mobility
• Restricted opportunities for exploration, reducing
opportunities for incidental learning
• Reduces opportunities for independence
• Reduces opportunities for socialisation
• Lack of opportunity to develop self-esteem
• Lack of control over the learning environment;
learning has to be taught
• Greater likelihood of failure, leading to
demoralisation
Encouraging the Development of
Mobility Skills for Congenitally
Deafblind People
• Establishing trust in carers and developing
security
• Early movement songs/rhythms
• Resonance boards / “little rooms” to promote
exploration
• Promotion of basic concepts: up/down,
right/left
• Use of mobility aids, eg walkers, standing
frames
• Voice prompts, smells, sounds and touch
• Independent walking
Quote from X’s Mum
“Multi agency working and early intervention have been
critical for x My family have been supported from day
one
x was picked up at one week from the newborn hearing
screening programme I said her are also
squiffy !!!
We have difficult days but we receive fabulous support,
she has such amazing determination and potential and I
feel now I know what I’m dealing with and the sky’s the
limit for her “
Sense www.sense.org.uk
• Sense is the leading national charity that supports and campaigns
for children and adults who are deafblind. Providing expert advice
and information as well as specialist services to deafblind people,
their families, carers and the professionals who work with them.
Sense also supports people who have sensory impairments with
additional disabilities
• Information and advice service
• This service is open to deafblind people, their families, professionals
working with deafblind people and anyone who has a general
enquiry about Sense or any aspect of deafblindness.
• Individuals who are looking for support or services will be put in
touch with the appropriate Sense regional office.
• We answer enquiries by telephone, text phone, email and letter.
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Telephone: 0845 127 0060
Text phone: 0845 127 0062
Fax: 0845 127 0061
Email: [email protected]
Any Questions