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Introduction
It is a well-known fact
that visual disabilities have a substantial effect on development and behaviour.
Children with visual impairments need special guidance in order to let
them develop as optimal as possible and to compensate for their impairment
as good as they can. This is even more important for children with both
a visual and an intellectual disability. The compensation mechanisms strongly
diminish when there are multiple disabilities. For example, children with
exclusively visual impairments are still capable to comprehend the world
surrounding them based upon verbal explanation, information storage in
memory and logical reasoning. The intellect and memory-function are important
compensations for the visual impairment. Children who have intellectual
disabilities as well, are less able to make use of these. For them it is
essential that they learn to compensate for their disabilities in other
ways, where the specific combination of disabilities has to be taken into
account. To assist in this process specific knowledge and skills of the
educator are essential.
The Visual Advisory Centre
is part of Bartiméushage. Bartiméushage is a centre in the
Netherlands that provides care and services to people with both an intellectual
and a visual disability. People are presented to our centre suspected of
visual impairments. Frequently this assumption is based upon changes in
their behaviour.
In recent years it has also
become clear that the incidence of visual impairments in people with intellectual
disabilities is disproportionally high. Research has shown that in the
Netherlands about 25% of the people with intellectual disabilities have
also visual impairments (1). A number which coincides with estimates in
other countries.
The difficulty to discern
visual impairments is positively correlated to the degree of the intellectual
disability. This is in line with the reduction of expressive behavioural
repertoire and self-reflection as a consequence of the intellectual disabilities.
As a result, the ability to express themselves or to communicate their
complaints has diminished. Frequently, signs of discomfort are missed or
misunderstood.
It is obvious that the best
chances for optimal development in people with intellectual disabilities
occur when their visual impairment is detected early in life. It is the
topic of this paper to address the issue what can be done to help those
people to develop as optimal as possible according to their own needs and
capabilities.
In order to offer a scope for development of personal abilities we must be familiar with the development-process of children with intellectual and visual disabilities. In the first paragraph I will briefly discuss the conditions which are important for the optimal development of children with both an intellectual and a visual impairment. In the second paragraph I will discuss some directives for guidance of those people when it appears that at older age the development has not been optimal. The last section contains the summary and my conclusions.
You will notice that in my paper I will use the word 'he'. I would like to point out that 'he' refers to both males and females.
1. Important conditions in the education of children with both an intellectual and a visual disability
1.1. Developing into a stable
personality
In the first place it is
important that a child can bond safely with a parent or caretaker. A good
relationship is the foundation on which the child can build its further
development. In the case of children with intellectual and visual disabilities
this bonding does often not happen in a natural way. The child behaves
differently. It is hard to recognize the signals of the child, to understand
them and to react. This can create an uncertainty with the educator.
1.1.1. Individual diagnostics
To help mutual communication
it is important that the behaviour of the child is 'understood'. What is
the matter with the child? Elaborate diagnostic testing will have to take
place.
The sooner the intellectual
and visual impairments of the child are recognized the easier the behaviour
of the child can be understood and the better it can be taken into account
in contact with the child.
1.1.2. Specific knowledge
When a child appears to
have an intellectual and visual disability, the parent or caretaker will
need to be given specific knowledge, for example about the consequences
of the combination of disabilities for the bonding process.
Visual as well as cognitive
skills play a role in the process of bonding. When eye-contact, visual
provocation, visual control and visual feedback are partially or completely
lacking, compensations will have to be developed to effect bonding. A child
starts to recognize people once he can discriminate between different sounds.
Voice-recognition, however, requires auditive discrimination and this is
often a problem for persons with intellectual disabilities. Constancy of
objects and persons can only come into existence after mental frames have
been formed. And this is often problematic because it requires a high degree
of conceptualization.
For a child with intellectual and visual disabilities it is therefore hard to bond safely unless the parent is constantly aware of the combination of disabilities. In the second paragraph I will expand on this topic.
1.1.3. Support in the interpretation
of the child's behaviour
To understand the behaviour
of children with intellectual and visual disabilities as well as possible,
parents and caretakers need help on a regular basis.
Why for example is the child
so withdrawn and why does he hardly react to signals from his surroundings?
Or why does the child cry so much and why does he cling to his parent?
A meaning has to be given
at any type of behaviour in every individual case.
1.2. Specific interaction
Once the parent knows what
is the matter with the child and has insight in the consequences of the
combination of disabilities for the development and behaviour of the child,
recommendations for interaction can be given, aimed at compensating for
impairments and optimalising chances of development.
1.2.1. Adjusting interaction
to the level of functioning
The child has optimal opportunities
to develop if interaction is adjusted to the level of functioning. The
child can grow into a harmonious personality if he can develop at the same
pace within the different development areas. If, for example, the process
of bonding has stagnated, a discrepancy can arise between the emotional
and intellectual level of functioning.
The chances of development
are optimal if interaction is adjusted to the lowest level of functioning,
in this case the emotional level.
1.2.2. Using compensations
One can distinguish between
three 'ways' of compensation:
- Compensations developed
by the person himself: the child can develop his own compensations by e.g.
making frequent use of acoustic and somatosensory information.
- Compensations introduced
by parents or caretakers: in order to make information accessible it is
important that the use of language is adjusted e.g. by phrasing in short
specific terms.
- Compensations in the physical
surroundings of the child: clear points of orientation can be introduced
so that the child can feel or hear where he is.
1.2.3. Position and attitude
of parents and caretakers
The attitude towards children
with an intellectual and visual disability is essential. To achieve an
optimal development it is essential that parents create conditions e.g.
by stimulating the child and letting him experience by learning. It is
important that the child gets room to experiment, to discover on his own,
to learn from his mistakes etc.
The fact that children feel
supported is, among other things, a factor that enables them to take a
position of their own.
2. How can we offer people with intellectual and visual disabilities optimal chances for their development at a later stage
2.1. Developing into a stable
personality
It is striking that people
with intellectual and visual disabilities presented at the Visual Advisory
Centre of Bartiméushage, often adopt a dependant and passive attitude.
They are very much focused on supervisors and parents. Sometimes they literally
cling to other people, or show other behaviour that brings into mind their
wish to make contact with the supervisors. Apart from this it frequently
happens that people with an intellectual and visual disability withdraw
from contact and let things happen around them.
Before giving recommendations
regarding interaction it is once again important that their behaviour is
understood and interpreted individually.
2.1.1. Individual diagnostics
In order to understand behaviour
as much as possible, medical-ophthalmologic information and psychological
information must be taken into account. The more information is available,
the better the behaviour can be analysed from different points of view.
At the Visual Advisory Centre
of Bartiméushage a method has been created that enables people to
develop in later life. This method is described below.
* Medical ophthalmologic
diagnosis and prognosis
The examination of people
with intellectual and visual disabilities starts by examining their medical
anamnesis. It is for example important to know the causes of their disabilities.
If there is a diagnosis,
we know which part of the visual system is responsible for the visual impairment.
The ophthalmologic diagnosis might also give more information about the
prognosis. Especially in the case of people with an intellectual disability,
one should be aware of possible changes in their visual functioning. After
all, they will not indicate this themselves or they will do so in a way
which is not understood. Changes may be so gradual that they are hard to
spot by studying their behaviour. Changes may also occur suddenly, for
example when the retina comes detached. But interpretation of behaviour
is difficult, certainly when people are concerned with severe intellectual
disabilities.
* Examination of visual functions
Examination of visual functioning
in people with intellectual disabilities asks for much experience and expertise.
Usually people are asked questions and they can indicate what they can
and cannot see. People with intellectual disabilities often do not understand
the questions. Furthermore they may not be able to indicate what they can
and cannot see, either verbally or by pointing it out. Therefore a lot
of information has to be interpreted from their behaviour.
People with intellectual
and visual disabilities are often afraid of medical examinations.
They need to be reassured
and put at ease. That is why the examination of their visual functioning
takes place in their own environment, if possible. By way of playing, their
attention is drawn and a way is sought to establish contact. This requires
a lot of time. A regular ophthalmologist usually has little time and little
experience with the ways of making contact and the skills used.
To be able to carry out
the different tests and examinations (such as skiascopy and fundoscopy)
a certain contact is required. Besides, certain measuring-techniques have
been adapted in such a way that visual functioning, even in people with
severe intellectual disabilities, can be assessed.
It is becoming more and
more obvious that people with intellectual disabilities often have problems
with their hearing as well. The Visual Advisory Centre has contacted experts
on auditory disorders. In the interpretation of behaviour it is important
to take the different sensory disorders into account and also the way in
which the combination of disabilities influences development and behaviour.
* Psychological examination
and observation of behaviour
A third important component
of the diagnostic examination has to do with gathering information about
the history of psychological development and present behaviour. If a psychological
file is available, it will be studied. An interview with parents and/or
supervisors takes place. They have known the person in question well and
for a long time and they can give information about his development and
present behaviour.
It is important to get an
idea of the measure of self-sufficiency and the level of intellectual functioning.
Unfortunately there are hardly any instruments for testing people with
intellectual and visual disabilities. Interpretation of behaviour will
be the main source of information. The person in question will be observed
in his environment. We use our own observations as well as video-recordings.
In the first place, we pay attention to the way in which a person receives
information about his surroundings: how does he use his senses, which compensations
has he developed for himself, how does he use these? To what extent does
he understand spoken language, how does he express himself, what are his
motor functions and dysfunctions, what sense of direction does he have?
2.1.2. Specific knowledge
People who are presented
at the Visual Advisory Centre, frequently have problems. These problems
often have to do with the fact that the process of bonding has not been
optimal. Specific knowledge is needed about the process of bonding to create
conditions that will still effect satisfactory bonding.
As is described in the first
paragraph it is very hard for children with an intellectual and visual
disability to bond safely with someone. They run a great risk of getting
caught in the first stage of the bonding-process. We find that they try
to continue the symbiotic ties to their caretakers. This behaviour goes
on, even when their childhood is over. Many forms of behaviour such as
shouting, clinging and self-mutulation can be understood in this context.
If the bonding-relationship
has not been optimal, people will not have been able to build much self-confidence.
They will then be extra sensitive to insecurities and obscurities in their
environment. In order for them to feel secure, it is important that their
environment is predictable. This requires information about the way they
handle information. What is striking is that people with intellectual and
visual impairments often have trouble understanding the world. Many things
are happening at the same time. And if they find it hard to listen selectively,
recognize sounds, understand words and make a connection between bits of
information, it becomes even harder for them to get a grip on their surroundings.
Before they are aware that something has been said, that a message was
meant for them, they have understood the message and have given a reaction,
they have been taken by the arm or the speaker has moved on. They are easily
confronted with situations they have not foreseen and cannot always understand.
This makes them feel that things happen to them suddenly and that they
cannot influence the situation. This can lead to fear and insecurity and
leads to passivity. Familiarity with the world around you is a condition
to take initiatives of your own.
People with intellectual
and visual disabilities can also feel insecure because they have been able
to develop only few compensations. To support these people, specific knowledge
is needed about the different possibilities for compensation and the manner
in which people can be supported in developing these ways.
2.1.3. Support in the interpretation
of the child's behaviour
In order to interpret behaviour,
individual diagnostic information and general knowledge will have to be
combined. As was said before, it is hard for people with an intellectual
and visual disability to build a safe bonding-relationship. If, for example,
a grown man asks for attention all the time, this may evoke negative reactions.
But, if his behaviour is understood as befitting the emotional level of
an infant the situation is quite different. The same behaviour can then
be understood as a way of looking for safety in a person who has not been
able to bond safely. Another example: Someone may be labelled 'lazy' because
he takes little initiative. It could be, however, that he takes little
initiative because he cannot cope with information in such a short time.
People with intellectual
and visual impairments may try different ways to get a grip on their environment.
One woman wanted to hold a flute in her hand all the time, even at times
when this was actually very awkward, for example at dinner time. This behaviour
was interpreted before as stereotypical for people with an intellectual
disability. Once a bag was hung on her chair into which she herself could
put the flute and take it out again later, the problem was solved. If you
are blind and unable to put a familiar object in a fixed place, you will
just have to wait till you get it back. People with intellectual and visual
disabilities often lack object constancy. Objects no longer exist once
they are out of their hands. These examples show that new aspects become
visible when new angles are exposed.
2.2. Specific interaction
If the meaning of a particular
type of behaviour is clear, it is easier to adapt the interaction to the
capabilities and disabilities of the person in question.
During interaction the stress
is on emphasizing compensations in such a way that a person is impeded
least by his disabilities. What are the most important aspects in interaction
to help people with intellectual and visual impairments to develop as optimal
as possible according to their own needs and capabilities?
2.2.1. Adjusting interaction
to the level of functioning
The personality development
of people with an intellectual and visual disability is not always balanced.
There are often differences between the levels on which they function.
Because of their difficulty in building a safe bonding-relationship, there
may be a discrepancy between the intellectual and emotional level of functioning.
A person might for example be 35 years old and also look like a grown man.
His use of language, however, reminds one of an 8 year-old and emotionally
speaking his behaviour is comparable to that of a child of 1 to 2 years
old.
The supervision will have
to take these facts into account. Supervision will have to start at the
lowest level, in this case the emotional level of a 1 to 2 year-old. This
man needs his parents or supervisors to be near and from this safe position
he can explore the world around him. This need will have to be fulfilled
while at the same time his level of understanding and experience of life
have to be taken into account. Someone functioning at this emotional level
will probably have problems recognising different people. To be able to
bond to a person you will first have to be able to differentiate between
different people. People with intellectual disabilities often have trouble
with auditive discrimination which makes it hard for them to recognize
others by their voice. It then becomes important to make yourself known
in another way: by always greeting the person in the same way, by touching
him in the same manner, by using the same perfume or after-shave in order
to be recognised by your scent or by a song you always sing. When children
are involved, people do this readily but when grown-ups are involved this
proves to be less self-evident. It is not quite natural to realise that
this grown man wants to keep tabs on you all the time. In connection with
his visual disabilities he will only feel secure when he hears the presence
of his parent or caretaker.
If supervision has been
tuned to the present level of development it is subsequently important
to keep in mind that the person in question is taken along to a new phase
in his development. To begin with, direct proximity is important, but this
can be expanded by walking away and keep talking. This way he can learn
to accept the distance. Gradually he will understand that a person goes
on existing even when you cannot hear him or her anymore.
2.2.2. Using compensations
It is important that compensations
are used to help people with intellectual and visual impairments compensate
their disabilities as well as possible.
Compensations are always
individually determined and work only when they suit that particular person.
Compensations are used in all aspects of life. I will now discuss some
of them.
- Compensations developed
by the person himself.
The person basely understands
spoken language, for example. Yet he proves to get a lot of information
from voice-intonation or context. To get his bearings, he makes sounds
and then gathers information from the acoustics.
People with intellectual
and visual disabilities sometimes use compensations which can only be discovered
by careful observation of their behaviour. In this way one gets insight
into which compensations suit this particular person, and the supervision
can be adjusted.
- Compensations introduced
by parents and caretakers.
People with intellectual
and visual disabilities can understand the world around them better if
the world is made predictable. To announce the beginning or the end of
an activity rituals may be used, for example singing the same song every
time it is time for dinner or to announce that an activity at the daycare
centre is over.
To make verbal information
accessible, an object-language can be used. This means that the person
in question is told that it is dinner time by letting him feel a spoon,
as back up of the verbal information.
Information can be made
understandable if supervisors create conditions that make it possible to
experience links. If, for example, you are involved in the growing of vegetables,
if you put the seeds into the ground, water the young plants, help with
the harvesting, are present when the vegetables are cooked and can try
what they taste like, you have all kinds of different, connected, experiences
which enlarge your understanding of the world.
For people with intellectual
and visual impairments it is particularly important to have real experiences
which are also relevant for the social, vocational and economic environment
in which they live (3).
- Compensations made in
their physical surroundings.
If you can hardly see the
world or not at all, and you have limited insight, it is difficult to experience
that there is a certain order in the world. All of a sudden there might
be a towel which starts drying you, but where this towel comes from and
goes to, is unknown unless this is brought to your attention. Supervisors
could show the people where the towels are kept and how they are put into
the dirty-linen basket afterwards. The towels should have a fixed place
and the dirty-linen basket should always be in the same spot to make this
work. This is an essential condition for learning where you can find what.
People with intellectual
and visual disabilities use moulds a lot because this enables them to do
things by feeling. When they find it hard to memorize information they
can be helped concretely by pictograms.
And for people who have
no sense of time, are unable to read the clock and cannot handle a kitchen
timer, another compensation will have to be made in order to make it possible
for them to handle the oven themselves. One can for example use a tape
containing ten minutes of music, to find out when a dish that has to be
cooked for ten minutes, is ready.
2.2.3. Position and attitude
of parents and caretakers
People who have had insufficient
chances to develop so far still need to learn by experience. Their surroundings
should be predictable and supportive but also offer sufficient challenge.
It is important that conditions are laid down which make it possible for
people with an intellectual and visual disability to experiment and make
their own discoveries.
What is needed is exploring
together, giving room and chances to experience themselves what their wishes,
capabilities and limitations are. They should be able to learn from the
mistakes they make. An appeal should be made to their intellect. By asking
the right questions information is made available and people are stimulated
to find their own solutions (4).
3. Summary and conclusions
It appears that people with
intellectual and visual disabilities have not always had optimal chances
for development. An important reason for this is that the visual impairment
is often not recognized.
In contact with them, not
enough attention has been paid to the combination of disabilities.
The question is what could
be done later in life to give them opportunities to develop as optimal
as possible according to their own needs and capabilities. In the first
place, their behaviour has to be interpreted and understood individually.
Therefore, individual diagnostics is important. At the Visual Advisory
Centre of Bartiméushage a method has been developed to achieve this
goal. Besides, specific knowledge is needed, in particular about the development
of bonding and their way of dealing with information. Many problems of
people with intellectual and visual impairments can be traced back to a
stagnated bonding-development. If there are differences beween the levels
of development on which people function, the lowest level will have to
be used as a starting-point. From there the person in question can be taken
along to the next phase. People with intellectual and visual disabilities
will have to be helped to compensate for their disabilities as well as
possible. For people who have to make up for lost ground, it is especially
important that they can learn by experience and get room to experiment
and come up with their own solutions.
It would be an improvement if the visual disability is recognized early in life, if the consequences of the combination of disabilities were taken into account and if people with intellectual and visual disabilities were to receive support in compensating for their limitations as much as possible.
Bibliography
1. Gunther, Frans, Lecture
5th congres of the World Association for Psychosocial Rehabilitation, Rotterdam,
the Netherlands, 1996
2. Gunther, Frans, Lecture European Conference on Education of Visually Impaired (ICEVI), Budapest, Hungary, 1995
3. Raemaekers, Marlies, Lecture Early Intervention Conference (European Blind Union), Bad Berleberg, 1995
Raemaekers, Marlies, Lecture European Conference on Education of Visually Impaired (ICEVI), Budapest, Hungary, 1995
4. Schrijnemakers, Liesbeth, Lecture 10th World Conference (ICEVI), Sao Paulo, 1997