Vision for Doing
Assessing Functional Vision of Learners who are Multiply Disabled
Making sense of multiple disability
In this chapter we return to consolidate the themes first met in Chapters 1 and 2. We then outline and expand a strategy to be used in PART TWO. This will reduce to a manageable size the vast array of abilities enveloped by the term 'multiple disability'.
As we are fully aware of potential pitfalls in our strategy, we also include some "notes for those who are interested in technical details". Readers are of course welcome to skip these more technical points and move right along with the discussion.
The story so far
In our Introduction to this book we reported that, of the children identified in Thomson et al's study (1985) as multiply disabled, most had minimal additional impairment. This finding had run counter to our own experience. For during the course of our daily practice, we had met many learners with much more severe additional disabilities. It seemed they had slipped through the net of visual impairment services. We then asked ourselves whether this was a real phenomenon or, was it akin to that occasion when, after buying a car, one subsequently seems to see that same model of car on every street corner? Perhaps we had simply imagined there to be large numbers of children with visual impairment amongst the ones we knew to be multiply disabled? As we showed briefly in the Introduction, our imagination was not in fact on overdrive. Our research did indeed turn up a number of children with multiple disability, for whom opportunities to learn about the world were severely restricted.
In one sense, however, our results generated a problem of their own. Or more precisely, they exacerbated a problem that already existed. With such a potentially wide range of impairment and disability, how could one be sure of representing that full spectrum of multiple disability? This brought us to the issue of assessment. In Chapter 1 we outlined a general way of 'opening one's eyes' to look at a learner. This was done by sharing the learner's perspective on her world. We then refined this view, indicating that assessment could usefully be thought of as a cyclical process.
- Chapter 2 took
up this theme. Beginning with the term 'Personal Aspects', we indicated
that in order to comprehensively cover multiple disability, a large number
of items would have to be included. This is because of the fact that the
term 'multiple disability' is a catch-all, comprising a panorama of abilities.
Let us review briefly the criteria we set out for our assessment instrument. For these criteria relate directly to how we might conceive of multiple disability.
- assessment, rather than being an end in itself, should be a means to an end;
- assessment results, and implications to be drawn from these results, should be illustrative for a wide range of multiple disability - from no apparent response to (but not necessarily including) measurement of visual acuity;
- instruments should not contain so vast a number of items as to be unwieldy in use;
- our greatest emphasis should be placed on discovering the effects of visual impairment amongst the constellation of disabilities (hence the title of the book!);
- a convergence of results in one assessment domain should inform results in another area: we wish to unravel the effects of multiple disability.
How are we to achieve these? For by omitting items we would run the risk of not providing for real children and young people with multiple disability. However, if we are exhaustive and make the list of items too specific by including all possibilities, then you the reader would be exhausted. You would be unlikely to make use of the instrument, other than as a possible cure for insomnia.
Some way of classifying multiple disability would help meet those criteria outlined earlier. By doing so, results of assessment would contribute to an understanding of what to do next. The range of multiple disability would be covered. We would reduce the sheer number of items. And the complexity of multiple disability would still be analysable in terms of the effects of visual impairment.
How then might we classify 'multiple disability'?
Before reading on you might like to consider what options are available to allow such classification.
Option 1: classify by medical condition
One obvious strategy is to adopt the medical terminology so familiar to the field of multiple disability. There is available a standardised set of terminology for doing so, known as the International Classification of Diseases (ICD). In ICD an unique number is ascribed to each condition listed therein. ICD classification has the advantage of having been thoroughly worked out, it is apparently simple, and is international so there should be (in theory!) less risk of cross- cultural misunderstanding.
Nevertheless it suffers from distinct disadvantages. Clearly ICD is not a functional classification for multiple disability. The essence of the requests which led to us writing this book was a need for functional understanding. It is of little help to know that a learner suffers
from Down syndrome, for such knowledge does not contribute much to awareness of the specific effects of this condition. An ICD index is no aid to curricular planning1.
Option 2: classify by educational category
A second option you might have thought of is to divide multiple impairment into specific educational categories - profoundly handicapped, severe learning difficulties, deafblind and so on. To some this may be more pleasing, partly because in one form or another it is already in common use (with a nod in the direction of continuous updating of terms used). There is a certain face validity. This approach has 'helped' to differentiate schools, and then to work out placements of children at these schools based upon such categorisation.
However this was the very system that was attacked by the Warnock Report (1978). Lady Warnock and her committee rightly showed it to be inadequate. Arbitrary divisions can represent just another form medical labelling. As we saw with ICD, we have to reject such a system. We reject this type of classification of multiple disability, pointing out that it is quite likely that this system was responsible for many children who have multiple disability missing out on visual impairment services: they went to the 'wrong school'.
Instead of either of these two options, we propose to adopt a fairly simple but radically different distinction for defining multiple disability. The reader will not be surprised to learn that it is based upon a learner's ability to do things, rather than upon inabilities. Now this does not mean that an ability to run and jump through hoops is a prerequisite, it may be that the only ability to do things is through minimal eye movements. But these eye movements could be enough for some children to learn a whole system of eye coding, communicating through this means anything from what they want for their dinner to the 'proof' of Heisenberg's Uncertainty Principle. And of course any scheme would have to be able to cope with the learner who is more severely multiply disabled.
Happily for us, a few workers in this field we contacted also used some form of structured process in their own intervention. For most, this was not an explicit procedure. A few had made explicit some structured process. The one which was logically the most internally consistent was one used by Laura Pease at Whitefield School, London. It in turn bore similarities to that of others such as that suggested by Virginia Bishop. In essence it uses a few broad themes viz: Becoming Aware, Beginning to Attend, Localising, Recognising and Understanding. Let us look at these themes in a little more detail.
A learner may only have a capacity to be aware of visual information - perhaps limited by an impairment resulting in severe mental handicap. It would simply be the case that the child or young person differed from a 'person in a coma' by appearing to show awareness that something had happened. There would be nothing beyond this. Informational content about where, when or why it happened would be absent. It might only be an awareness of the difference between light and dark. It might only be a movement away from a noxious odour. The presence of other disabilities would always (unless you wanted to try this scheme out with a newborn, or someone asleep - neither of which we recommend!) be associated with this relatively poor ability. The greater the number of additional impairments, and the greater the severity of these impairments, the less likely it will be that the learner has good visual functioning. Therefore children and young people with severe and complex additional disabilities will be more likely to show only an awareness of a visual stimulus.
Our handling of this single theme would probably provoke the loudest outcry from research psychologists. And rightly so. For they have invested a tremendous amount of time and effort into investigating the concept of 'attention'. And we intend to reduce that to a few paragraphs! For this reason we have chosen to call the next stage up from awareness that of attending (rather than attention) (But psychologists and other interested parties should see the caption).
Attending is a little more specialised in response, showing the ability to attend to a visual, or any other, event object or place in the child or young person's world. In this the child (say) begins to show some differentiation to something happening in her surroundings. It might only be a fleeting movement, lasting less than a second, and it will often be inconsistent. To attend, albeit for brief periods, is to show the beginning of distinguishing different people, objects, events and places.Localising
Slightly more specialised than attending is when the learner is able to locate an event. Her movements will show more consistent differentiation in relation to specific events in the surroundings. For instance, a child may turn consistently to locate stimuli, following moving objects and events through movements of eye, head or other body parts. Notice though that we are not saying that the child would have to be able to make such coordinated movements. It may be that she can only move her eyes and nothing else. As we will see in a later section, such an ability to Iocalise would be a prerequisite for being able to use a system of eye-coding to communicate. (But it would not be sufficient. She would also need to be able to understand - see below).
To recognise the stimulus object or event, the learner has to isolate particular features and has to have some capacity to construct a mental representation of that event. It may not be the same mental representation that a person more cognitively able would make. Typically, learners who are operating at this level of ability would not be able to generalise from one situation to another. Many of the standard tests of vision carried out with children require this ability to recognise consistently the features of stimuli.
At the highest level, a learner would be able to comprehend, to understand the meaning of an event. Here a learner can not only recognise the features of an object, but understand the relevance, significance and use of that object.
As with each of the above themes or "categories", there will be further refinements and sub-dividing within the theme of 'understanding'. Indeed within this theme we would expect there to be a great deal of sub division. However, in this book we propose to devote a relatively little amount of space to discussing this area. You may reasonably ask why this should be so. You may recall that our reasons for writing this book arose from us discerning relatively little that was relevant to the learner who was more severely and multiply disabled. Our focus lies firmly within that area.
In addition we have tried to dovetail into a separate publication which deals very well the child who has good understanding as well as useful vision - Look and Think Checklist published by RNIB2.
We have already emphasised that within our themes there is ample room for further differentiation. But there are other problems with our scheme, ones which you should be aware of at the outset. The biggest problem with the scheme lies in the fact that it stresses a kind of general intelligence. However, there are many instances in the real world where the notion of a general intelligence just does not fit. For instance there are:-
Stroke victims who have one function profoundly affected, but others remain intact.
So-called Idiot Savants, who are severely mentally disabled but able to say what day the 29th October 1922 fell on.
Those - often casualties of war - who suffer from blindsight. They can locate an object if told to hazard a guess ("Pin the tail on the donkey"), but they will argue that they cannot do the task because they are blind. AND they will remain unaware that they have succeeded.
Advantages of the strategy
Despite these and other difficulties with our scheme, certain advantages ensue. Other than those we outlined at the beginning of this section, it helps us towards a guide to interpreting how a learner responds to events in his or her surroundings. From this it helps to derive and plan systematic methods of intervention. Notice that in this framework there are no hard and fast rules about which child falls into which category. As we pointed out, the notion of categorising or labelling a child does not square well with trying to make sense of his or her individual needs.
At the same time, information on Personal Aspects will convey much that is useful in designing a programme of intervention. Such a framework is also consistent with allowing us to move from the strictly perceptual, and move towards the increasingly cognitive. And it happens irrespective of the presence or absence of other impairments. It may be that a child is quadriplegic, or is aphasic, but use may still be made of Vision for Doing. We hope that the reader finds this definition of multiple disability useful for the purposes of the book. To give you some idea of how this might work, see Figure 3.1.
This offers an approximation as to when certain broad areas of intervention might become appropriate. This is the basis on which we will proceed in PART TWO of the book, where we discuss how to assess and make sense of the results of that assessment in planning methods of intervention.
Next step in the strategy
Use of Awareness, etc as organising themes helps us in two ways. First, such a scheme allows us to narrow down our areas for assessment. Second, and of equal importance, it allows us to focus the results of that assessment. Using this strategy, we can build areas for curriculum development around each of these organising themes.
Conveniently, the broad areas for assessment you will be using are non-visual and visual. Non-visual areas for assessment are of course 'The Other Senses' of hearing, touch, smell and taste. Finding out how well the learner makes use of these non-visual senses and then doing the same with the use of vision will help you to assign the learner into either Being Aware, Attending, Localising, Recognising or Understanding. (This is what we do in PART TWO of the book).
This process sounds a very complex and roundabout way of approaching the assessment of vision. But what we are suggesting is that you start from what you know and are familiar with - how the learner responds to everyday experiences such as eating, listening to music and moving around (where possible). Having looked at these in some detail, and having made a decision as to the "level" of the learner's response, you can then use these as a basis for understanding the learner's responses to visual stimuli.
So, to discover the general 'level' for each learner's curriculum development, you compare the results obtained for these non-visual with visual areas of ability. Where there is a difference among the senses, use the 'higher level' around which to organise areas of curriculum development. If this is too difficult for the learner, all you have to do is to drop back down to the 'level' below.
To make things easier, we have organised several example topics for curriculum development around these very same themes. These are to be found in each section of PART TWO of the book.
An example of how the strategy works is given in the caption. But do not worry if at this stage it is not too clear exactly how the strategy will operate in practice. At the end of PART TWO there is a Summary Chart, giving further explanation and guidance.
In Chapter 2 we set out the difficulties that would be encountered in representing the full range of what could be meant by 'multiple disability', We have in this chapter sought ways of alleviating these problems. The strategy that is suggested as a potential solution is one with which you will become familiar in the second part of this book.
The next chapter is the final one of PART ONE of this book. In it we will set out our own principles for good practice. We believe these principles to be applicable across settings, employable not only by teachers but also by therapists, care staff and others who are involved in the educational management of learners who have multiple disability.
Example of how strategy works:You carry out the items in the non-visual (ie; 'the other senses sections, followed by the visual assessment sections. You discover the learner is functioning as follows:-
Hearing - Awareness
Touch - Attend
Vision - Localise
You therefore integrate the topics for curriculum development that are organised around localise. These are what you will use in developing curricular opportunities. Should you feel these are too difficult, then drop back a 'level', where appropriate. That is you would return to collate the suggestions which are relevant to Attend.