Vision for Doing
Assessing Functional Vision of Learners who are Multiply Disabled
by Stuart Aitken & Marianna Buultjens
Sensory Series No 2
Moray House Publications, 1992
ISBN 0901580392
Assessing Functional Vision of Learners who are Multiply Disabled
by Stuart Aitken & Marianna Buultjens
Sensory Series No 2
Moray House Publications, 1992
ISBN 0901580392
This book has been written for all who live or work with children and young people who have a visual disability in the presence of one or more additional disabilities. It offers assistance in assessing and interpreting the effects of visual impairment, where it occurs in the presence of multiple disability. The contents are not medically or clinically based, but rely for the most part on using strategies and materials easily accessible to all. The only essential qualification is a strong motivation to make the living and learning conditions for people with multiple disability more appropriate to their needs.
The presence of dual of multiple disability makes assessment of vision by the usual means more difficult, or - some would argue - impossible. Widely available tests of visual functioning usually expect a certain level of cognitive ability, understanding and use of language. As vision, along with hearing, is one of our main distance senses (and the channel by which, some have estimated, we do about 80% of our learning), it can be a problem for care givers and educators if they are unaware of how well and in what ways a person sees.
Visual disorders may appear in combination with many different types of multiple disability. For instance, a high frequency of eye disorders is present in children and adults who have "mental handicap". (This frequency is so great because there is a close association between development of the eye and the brain. Where damage occurs to the brain during foetal development, vision may also be affected.) As many as 25% of children with hearing impairment may have some form of visual impairment. Evidence exists of visual impairment in 50% of children with cerebral palsy. Unfortunately the effects of these visual disorders often go unrecognised by care givers, medical staff and teachers.
The contents of this book come from both first hand experience and research as well as the experiences that teachers, medical practitioners, instructors, parents, psychologists, therapists and others have shared with us.
The procedures used grew out of many discussions, requests for help and suggestions offered by staff working with children and adults who have multiple disabilities. Conversations varied but they centred around two questions: how much vision did these people have, and what would this sight allow them to do?
Answers to these questions enable the design of appropriate materials and curriculum. We hope to assist those who are not specialists in visual impairment. Moreover we assume no access to specialised equipment. One some occasions, it will be helpful to have assistance from another person. Anyone using this book should be prepared to look carefully at the child or adult and then try to interpret her/his behaviour. Ask questions of your own observations to help build up a sense of the complete picture or that person - the whole person, not just a little part. Working in this way will place you in the role of a problem solver, deciding which methods to try on subsequent occasions.
Our aim was to provide a procedure which:
As we have said, none of this requires access to specialised equipment. We do recognise, though, that it is useful to know just what the use of specialised equipment might have to offer. We have, therefore, provided additional information which illustrates approaches to assessment and curriculum planning using technology.
Of course, the great cop-out for those who write a set of guidelines is that the authors can then pass over responsibility to those using that guide (ie you the readers) and ask them to take the initiative. We intend to follow the same line! There will be many occasions - usually where you least expect it - when the child or young person ventures to do something which demonstrates visual potential - when out in the bus, at the swimming pool, being pushed in a wheelchair between rooms or when receiving physiotherapy. Use that information and incorporate in into your assessment. All of these combine together to make up what vision allows us to do. For it is what vision enables us to do that constitutes functional vision - Vision for Doing.
Our research began as the result of following a hunch. We had been involved in a project during 1984/85 which set out to try and discover information in respect of all children with visual impairment living in Scotland. Encompassing children from birth to 19 years of age, throughout the whole of Scotland, the study was interesting not only for what it found but also for what it did not find (Thomson et al, 1985).
Responses were given on behalf of 805 children who had visual impairment according to the following definition:
"those children ... who present problems of educational management as a consequence of visual impairment or handicap and who require special consideration because of this, whatever other difficulties they might have in addition"
(Thomson et al, 1985)
Among a few of the many findings of that study, much-needed information emerged on types of schooling, whether there were other members of the family who had visual impairment and causes of visual impairment. There were, nonetheless, some anomalies.
The most important anomaly was the knowledge that there were many children with visual impairment who had not been reported on in the results of that study. Over the combined years of our professionals contact with families, we had known many children who for some reason had not come to the attention of the Edinburgh University study. They had one thing in common: they were not only visually disabled, they had multiple disability. was it our imagination? were these children not after all visually impaired? We decided to find out. This book is the culmination of that search.
We began our search by scrutinising those responses which had been returned in the Edinburgh University study. A pattern began to emerge. Many of the children reported as being multiply disabled had in fact fairly minimal additional impairment. (Later on we will go into a little more detail about what we mean by 'multiply disabled'.) The implication of this finding was even more striking. It meant that children who had complex, profound, severe additional learning difficulties might not be recognised as having visual disability. Or, where visual disability was noticed, little was being done about it (in terms of educational management).
There may well have been apparently simple reasons for children not having been reported. One suggestion made to us frequently went something like this: given the severity of the child's other disabilities, parents might not have felt that the visual impairment was of sufficient note. This, however, begged the question of why they thought this in the first place. Was it to do with the way in which their child's needs were assessed, explained to them, or educational provision prioritised? A more recent analysis has indicated a complex interaction of these factorsref4. Their results demonstrated that explanations offered by the medical profession concerning specific effects of a child's visual impairment are indeed not always satisfactory.
Our research began to take off in several directions. Professionals were invited to respond to a questionnaire, we visited schools offering to make our own assessments of individual children and we looked around for other evidence of this problem.
We identified a random sample of 50 children from the Thomson et al study, all of whom had multiple disability. We then contacted each child's ophthalmologist and invited her or him to reply to a short questionnaire. We did the same with the child's psychologist, sending a different questionnaire. We were interested in finding out the processes of assessment and transfer of information between those concerned directly with the identification and assessment of the vision of children who have additional impairments. (We did of course recognise that many others may be involved in this decision making but this fact does not affect our findings.)
The results of the analysis of these questionnaires are presented in detail elsewhere (a reference list is included at the end of the book should you wish to follow this up). In brief, ophthalmologists were found to use measures which were unlikely to provide information specific enough to help in classroom (or home) management. There seemed to be little understanding of the type of information which would be useful to education personnel. There was heavy reliance upon the opinions of others from within the medical profession, most of whom would have had very little, if any, training specific to visual impairment.
Responses from psychologists showed that this group depended upon those same medical sources described above, with very few having carried out their own assessment of visual functioning. Where such assessments were conducted, these were usually observational. Where formal developmental measures were used, these scales were not designed for use with children who have a visual impairment.
Taken together, the results of these two studies indicated some of the factors likely to lead to an under-reporting of visual disability in these children. Some means were therefore required which would allow identification of the effects of visual impairment for such children.
Simultaneously we went to see the 50 children identified through the questionnaires. We carried out our own assessment of the individual child's visual impairment. We talked and listened to school staff in an attempt to discover the nature of the support they received, or would like to have received, from specialists in visual impairment. We noted that we were sometimes the first people to have come to the school with experience in visual impairment.
We looked at school records in an effort to find out what kind of information on the child's visual impairment had been supplied. Where medical information was available, it was usually of a sort that would been of little use to a teacher developing a curriculum to take account of the effects of the visual impairment. We were struck by the extent of the problem. Almost every school we went to asked us to "take a look at these other children while you are here."
None of the parents of children who were 'discovered' in this way had received a questionnaire during the Thomson et al study. This finding did not therefore support the suggestion made to us that complexity of disabilities was the reason parents had not returned the questionnaires: in fact a questionnaire had never been sent to these parents. Nor was it the case that it was lack of awareness of the part of Thomson and his research group. For they had relied on each local authority to distribute parental questionnaires. The conclusion was that the child's visual impairment was either unrecognised or had been downgraded on the priority list of disabilities.
The need for and shape of this book came from those in-service days carried out in schools where we listened and responded to what practitioners really wanted to know. Often this was very different from what we thought they wanted to know. During these sessions we introduced members of staff to thinking about the different roles and functions of vision in daily living and learning and of the implication of visual impairment, especially for a learner whole other senses or faculties are impaired. We also carried out work in a variety of settings dealing with adults, which has led us to modify and develop our thinking.
The many requests from teachers who were not specialists in the field of visual impairment drove us to develop assessment tools for their use which met the following criteria:
The aforementioned Thomson et al (1985) survey found that 32% of returns were in respect of children with additional impairments. Figures for the year 1985 from Sweden showed that 55% of visually impaired or blind children, aged from birth to 7 years, were identified as having additional impairments (TRC 1985). A significant different was therefore demonstrated between Sweden and Scotland.
Results of other studies by such as Warburg et al (1979)ref5 and Ellisref6 would lead one to expect a high prevalence of visual impairment, given greater frequency and severity of other impairments.
The study by Thomson and his co-workers found that children with more severe additional or multiple impairments were located in schools for the blind. Their data, for those children who were placed outwith schools for the blind, presented a picture of children with minor or moderate additional physical disabilities. We were forced to the conclusion that a number of children, located in schools for the more severely disabled, had visual disability - the effects of which were going unrecognised.
It was a relatively simple matter to find these children. One means at our disposal was to look at those schools in which the expected frequency of children with visual impairment was greater than the reported frequency. A sample of 3 schools was then selected, for which the reported figure of children with a visual impairment was lower than this expected figure. Two out of these 3 schools were receiving no support from a visiting teacher specialising in visual impairment. The third school received a visit once per term.
An indication of the extent of the problem was that at one of these schools, with a role of 90 pupils aged up to 18 years, over 30 of the pupils had visual impairment.
Of course, it is only worthwhile to identify a learner's visual impairment when there is something positive which might be expected to emerge out of that identification. There have to be implications for educational management. If, after assessment, no implications arise for those working with the learner, the process of identification would simply be a waste of resources and could rightly be criticised as unethical. For most of the children we identified, our results and suggestions were indeed directly applicable to consideration of the curriculum being offered. For some the results led to questioning the whole structure of approach to learning. Our approach demonstrated that for these learners the result of assessment could lead to specific changes in the curriculum offered.
Vision for Doing is essentially laid out in 3 large sections. Figure 1 presents in diagram form the ways in which you might like to make use of the book. It acts as a kind of conceptual map.
The text comes in two main forms. The main text is what you are reading right now. Peppered liberally throughout the printed book there are notes in a smaller size of type. These come in the third column of a page and give you a chance to follow up information in more detail. Here you will find items for further reading, detailed descriptions of areas of specific interest and technical points. It is up to you to decide whether you want to read these, omit them entirely or come back to them another time.
[For the HTML version these notes and references from the 'third column' are linked within the text to a separate file.]
Part One does not launch straight into a description of what to do in your assessment. We believe this would be premature and that some groundwork is first needed. We hold certain beliefs as to the meaning of assessment, as to what should frame the general approach to working with those who are multiply disabled and as to how to make an assessment procedure manageable. We would like to share these with you. Without such an appreciation we feel that any specific approach to the assessment of vision would be impoverished. (For some readers the story will be familiar but will, we hope, serve to orient that readership.)
Here we offer what we understand by the terms Assessment and Functional vision.
Here we discuss in more detail those features of the individual learner and her or his environment which have to be taken into account in the process of assessment.
In this chapter we outline a way of integrating the results of assessment. This helps in the design of a curriculum appropriate to the learner.
Chapter 4 offers the reader certain principles we called "commandments" - which we believe should be considered in all work with young people who have multiple disability. These are principles which we seek to promote throughout the remainder of the book. We believe the principles proposed should concern not just those who want to assess the sight of learners with multiple disability. We see them as being of central concern to all those who are motivated to engage in working with people with multiple disabilities.
Having set out building blocks in Part One, we turn to the second major component of the book. In Part 2 there are 3 chapters each with a number of sections. These are concerned with suggesting ways of assessing the learner's vision, helping to make sense of the results and in offering techniques for curriculum development (note that we are using the work "curriculum" in its widest sense - to refer to all opportunities for learning that may be offered). Part 2 is intended as an interactive aid through which findings in one section might be linked with observations from another in order to formulate new methods or refine existing practices.
Three sections deal with:
Perhaps unexpectedly we move on to invite you to observe how the learner responds to events experienced other than through sight. This is dealt with in four sections
The sections of this chapter form the bulk of the book. Together these provide a guide to the situations and activities during which observations can be made of whether, and how, a person is functioning visually. Most of the materials used are to be found in any school, centre or indeed in the kitchen at home! We progress from situations and activities which indicate whether a learner has light perception through to the stage where a more formal assessment of visual acuity might be undertaken. At this stage we refer you to other sources. Explanations are given on what to observe and how to do this, as well as how to use the materials suggested.
We conclude with a series of short essays expanding on topics which are mentioned briefly in the main text.
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