Tom Visser, from the Rafael Department at Sint Michielsgestel, describes current developments and approaches to the care of deafblind children within the department.
Description of Current Developments
The Institute voor Doven (IvI) first came into contact with children who were deafblind in the early 1960s, when staff from the Institute visited Potsdam (Germany) and Poitiers (France) at the request of the then Board of Management of the Institute, to learn about the most appropriate ways of caring for and educating deafblind children. The Institute took the plunge in 1962 and admitted the first deafblind children. In 1968, following a period in which it was sometimes necessary to sleep two children to each bed, a building was made available specially for the children: the Rafael department for children who are deafblind was born.
During its first 20 years the department grew slowly, but its development began to accelerate after 1981. In recent years the number of children admitted to the Rafael department has continued to increase and now numbers 70. One change has been the fall in the proportion of children with Rubella syndrome in recent years, from around 80% of our population ten years ago to some 50% today. Many children admitted in recent years have different syndromes: Zwelleger syndrome, Goldenhar syndrome, CHARGE association and Usher syndrome. It naturally makes a great difference whether a child is deaf and blind from birth or whether one or both function losses developed at a later stage in the child's development.
Theory and principles underlying the educational programme
The need for an adequate theoretical framework has always been recognized at the Rafael department, and we have therefore constantly been on the lookout for theories which could help increase our understanding of the behaviour and development of children who are deafblind, and which above all could help us to place the experiences built up by parents and staff at our Institute into some sort of ordered framework. Our hope is that this framework will increasingly enable us to use these experiences in the development of an optimized educational programme.
At the moment, we draw on three theories in particular. First is the deprivation theory. This theory describes various forms of deprivation and their impact on the development of children. Sensory deprivation means that a child observes the world in a very fragmentary way, often failing to process adequately the multitude of information with which he or she is bombarded. The child's response is often to shut off from certain stimuli while focusing on others in a one-sided way in what appears to be a complete fixation.
Another common problem in the early years of life of children who are deafblind is social deprivation, where the development of the early mother-child relationship is disrupted by frequent hospitalisation or the poor physical condition of the child. This results in oversensitivity to certain stimuli, and this again can easily lead to atypical behaviour patterns, so that 'normal contact' with others gradually becomes more difficult for the child.
A second theory which offers many useful insights is the 'bonding theory'. This focuses mainly on the importance of correctly 'seizing' and interpreting behaviour used by the child to try and make intentions clear. If the carers then respond adequately to this behaviour, the child develops an 'inner working model', as it were; the child learns how the carer will respond and is thus able to develop a feeling of competence, a realisation of how to become an active 'conversation' partner. In recent years the contribution of "the transactional model of development" (Ende & Sameroff, Vogel, etc.) has been significant for our department. In this model developmental problems are related over time to a continuity of rigid or dysfunctional child-environment interactions.
The third theory underpinning much of our thinking and actions is the social learning theory. This theory emphasises the major influence of the social environment on the development of a child. According to his view, the child's development is influenced by three factors: by reinforcement of the behaviour which the child itself displays, by instruction and by imitation. The main problem affecting the development of deafblind children is that they frequently fail to discover the contingencies between different events. Consequently they often learn in a very limited way through observation and imitation of other children and adults, and develop virtually no form of spontaneous learning. The social learning theory is used increasingly within our department for the further operationalisation of the bonding theory; in our view, the two theories complement each other very well.
In the debate on the most adequate form of caring for and educating children who are deafblind, diagnostics should be seen as a 'keyword'. Without a very clear and cohesive insight into a child's limitations or handicaps, development potential and his or her optimal learning conditions, it is not possible to set up an adequate programme. At the Institute voor Doven, the Diagnostic Centre was founded to meet this need. The Centre's tasks cover both diagnostics and the treatment of children and adults and are carried out by six working teams: the Medical Service, the Audiological Centre, the Vision Centre, the Intake and Differentiation team, the Educational Psychology and Counselling team and the Developmental and Behavioural Problems Prevention and Treatment team. Frequently they work together on a multi-disciplinary basis. The Rafael department works very closely with all the six working teams.
Several staff in these teams have specialised in issues relating to the care and education of deafblind children. Each of the diagnosticians is expected to be capable both of conducting adequate and reliable diagnostic examinations within their own discipline and of 'translating' their findings into an individual treatment plan for each child. They are also expected to be capable of communicating their findings directly to the child concerned and/or their parents.
For special educational and psychological diagnostics, the 'broad band procedure' is used. Both 'free field' and 'standardized test' procedures are employed: conversations and interviews with the parents, observations at home, in the living group and classroom, checklists, inventories, tests, etc. The essential point is that each form of diagnostics should lead to concrete recommendations with respect to the treatment plan for each child. The entire approach at all times retains the character of a 'teach and test model'. Recommendations which have been 'translated' in the Individual Educational Plan (IEP) into concrete agreements with respect to the child are subsequently put into practice and evaluated for their effectiveness. Where necessary the recommendations are adjusted, possibly in combination with further diagnosis.
Organizational model of the residential home and Rafael school: From integrated living and learning to peripatetic support within the mainstream education system
To mark the opening of the renovated residential homes and the new Rafael
school building, we invited a number of 'experts' from outside the department
and from outside the Institute voor Doven to perform a strength/weakness
analysis of our care provision based on their wide experience. These
experts were people working in the care of mentally handicapped persons,
children with severe psychological and psychiatric difficulties and children
and adults who are deafblind. The findings of their analyses were
surprisingly concurrent in a number of respects. On the one hand
there was great appreciation of the high quality of the care, the capacity
for very methodical working and the high commitment of the staff;
on the other hand, there was concern that the wide range of care options
offered appears to lead to overstimulation of a not inconsiderable group
of children. This overstimulation derives in part from our tendency
when planning the I.E.P. to be guided mainly by the developments undergone
by the child in a given - sometimes specific - area (e.g. communication
development/language development), and less by the emotional and social
development of the child. As a result, many children in our care
were plunged too quickly into what, for them, was an overly large, complex
and unpredictable world. This 'criticism' of our working method largely
confirmed the thoughts which had already been voiced in many internal discussions.
The upshot was a realignment of our organization in the direction of what
we have called the 'continuum model'.
This is a model in which the living and learning/school environments are precisely tailored to each child's individual needs. It is thus a model which can offer the child an environment which is surveyable and predictable to the extent that this is important for the child, and which can be broadened in stages. This gives the child an adequate sense of security and enables the child to integrate new experiences, in terms of understanding and skills, with experiences gained earlier.
At one end of the continuum is the care provision, in which the living group/residential situation plays a crucial role and learning/the school is completely integrated in the activities taking place within that living group. At the other end of the continuum is the service provided for children who use only the school programme or who have been integrated in another form of education and receive peripatetic support. Between these two extremes are a number of 'intermediate steps'. In his workshop in Cordoba (at the IAEDB World Conference) Walther Tibosch, head of our residential setting, will give more extensive information about our "child based organization".
Interaction, communication and language development
It is the view of our department that the 'heart' of the care and education of children who are deafblind still lies above all else in our commitment to helping the children to develop the best possible level of communication, and to bring them to the highest possible degree of language development.
In recent decades major strides have been made in this development process, and we have also seen a number of 'waves' in our department. During the department's first two decades much attention was devoted to what we could call mutual interaction between child and educator, or the development of conversation. The educator tries to "seize" what the child has tried to express and gives him or her the correct communication code for this before going on to react as adequately as possible to the communication.
In the last ten years a great deal of work has been done on the development of the various communication codes, including the use of objects of reference, drawings/pictures, reference books and on the further development of a wide variety of calendars. These developments are of vital importance because they make it possible, with increasing success, to give the child the communication code which is both the most effective at present, and which also lays the foundation for the next step in the communication development process.
One thing which we have observed in recent years is that attention is often given to the code at the expense of attention to the essence of communication and the development of mutual interaction. Our contact with four experienced colleagues in the European Working Group on Communication has made this clear, particularly to myself. Through in-service training activities, however, we are now working to shift the emphases once again.
The use of signs is currently the subject of much study. Some children and young people will initially - and sometimes permanently - have to communicate through signs matched to their abilities. Colleagues at the Aalborgskole in Denmark recently published an article on this subject in this journal. Our approach is largely in line with theirs. Little or no research has been carried out in Dutch situations into the use of the Dutch Sign Language. What adaptations in use occur in the Dutch situation is still unclear.
Over the course of the years we have made a distinction between communication development and language development. Whereas in communication development the primary focus of attention is on learning to communicate as adequately as possible, in language development the main focus is on learning the Dutch language and, in particular, learning to read. This may sometimes be one and the same objective, but in many cases this is not so. Of prime importance is that everyone knows what objective he or she is aiming for at each moment. Experience has shown us that insufficient attention to this point can result in us investing a very great deal of time in teaching a very limited number of words to children who proved to have very little capacity for this, while these words often turned out to be of little actual use in their communication after leaving school. We also found that with other children, devoting too little highly explicit and skilful attention to 'learning language' can hold them back at an unnecessarily low language development level and, in particular, stop them reaching the level of reading which they must be regarded as capable of achieving.
The development of independent living and social skills and the development of pre-vocational and vocational training
In addition to the development of the most adequate communication skills possible and the highest possible language level, the development of skills to live and work in less restrictive environments also occupies a key place in our programme. For children who are deafblind, developing the highest possible level of independent living and social skills offers the opportunity to achieve a feeling of 'being able to do something themselves' and of 'being somebody' - in order word, to develop a feeling of competence and autonomy. Until around five years ago this aspect of development was given much less attention than the development of communication skills. In particular, visits to colleagues where the programme for children who are deafblind is linked to centres for visually handicapped persons, showed us that they had developed this and gave it more attention than we did. When planning and equiping our new school building, therefore, we made use of the opportunity to give this component of the programme the room - literally - it needs to develop to the full.
From the age of 12 children in our Centre can now follow a programme
which we have called 'supported living and working'. The following
are some of the features of this programme:
Activities within the programme are structured in such a way that the child is required at all times - to however slight a degree - to use his or her own initiative. This is in order to prevent 'learned helplessness' as much as possible.
Many activities are simple and routine in nature. This means that staff constantly have to search for activities which fit in with the world of the child, which are as varied as possible and yet which are routine in nature and result in a product which is recognizable for the child. Continuous error analysis must be used to make clear which aspects require extra training and/or where the skill to be learned needs to be modified.
As far as possible, the activities should show a logical relationship with each other. For example, potatoes are sown in the garden and harvested again later. In the woodworking room, boxes are made for storing the harvested potatoes. In the kitchen the potatoes are boiled, fried, chipped or made into chips and frozen. The same products are then bought in the shop, etc.
Maximum attention should be devoted in these lessons to the development
of social skills such as waiting, sitting still in one place, asking for
help in the right way, helping each other, leading cretin activities as
a pupil, etc.
The use of Individual Educational Plans
In the Rafael department working wt. Individual Educational Plans (IEP)
has assumed a central role in the working method. In principle the
IEP is redefined once a year in an IEP meeting. During these meetings
the parents, given their extensive experience with their child, generally
have a large and important contribution to make regarding the details of
their child's IEP.
Each IEP consists of a 'personal profile' and a description of each aspect of the individual's development programme. In the personal profile an attempt is made in one or two pages to give a description of the child or young person in which their personality is characterized as sharply as possible. It also examines the way the environment should be tailored to him or her, in order to ensure well-being and opportunity to develop. An important element of the personal profile is the description of what is regarded as the developmental potential of the child concerned.
The descriptions of each aspect of the individual development programme give an indication of the baseline for evaluation and of the objectives and methodology. The programme file belonging to each IEP contains a detailed description of the working method for each programme component. In the Rafael department, a number of inventories have been developed in recent years which enable the development of the children to be monitored. These 'home-made' lists chart the socio-economic development of the child, the development of socialization and modified behaviour, a number of aspects of personal independent living skills and the development of a feeling of competence. The lists give a good impression of how well the programme is matched to the capacities of the child and indicates the presence of overstimulation or under stimulation. In this way the list has a strong signalling function. The advantage of the lists, all of which are developed in collaboration with a large number of experienced staff, is that they chart very accurately certain developments in the children. Many standardized lists developed for this purpose are based on overly large development steps and are thus less suitable for this particular group of children. On the other hand, the obvious drawback of the Rafael lists is precisely that they are not standardized.
In principle these lists are developed for ech IEP-meeting. Apart from these lists, standardized inventories and, where possible, standardized tests are also used every two to three years. The aim at the moment is to record the results in a sort of pupil monitoring system, making it easier to chart the development of each child over a large number of years.
Working with co-ordinators (school) and heads of the group homes in the role of supervisors.
The book 'Staff Supervision in Services for Sensory Impaired Children and Adults', which appeared last year, cotaines an extensive description of several aspects relating to supervision within the Rafael department. One of the main reasons for deciding to work with co-ordinators/supervisors was the observation that, in our situation, the visual and hearing function loss, the learning and developmental difficulties and the medical problems are very different and complex. Staff cannot be expected to possess all the understanding and skills necessary to be able to draw up an IEP themselves for every child and to be able to implement that plan unaided.
Of the multitude of tasks which co-ordinators carry out, two are seen as the most crucial. In the first place they are responsible for adequately co-ordinating the contributions of the many people involved (e.g. parents, teachers, group leaders, ophthalmologists, audiologists, etc.) for monitoring continuously that the correct priorities are set within the programme. Their most essential task, however, remains the supervision of staff in the workplace itself: demonstrating, coaching, observing - possibly with the aid of video - and discussing their observations, etc. Our experience is that this is still the only truly effective way of 'learning the trade' properly.
Training is seen as a keyword both in our department and in our Institute as a whole. Everything stands or falls on having the capacity to train new staff well and to offer experienced staff the opportunity for ongoing in-service training. I have already indicated in discussing the co-ordinators/heads of group homes that we regard the supervision of staff in the workplace as something which should play a key role here.
In order to be able to place staff training and supervision of parents in a more concrete framework, this school year we have started recording elements of our programme, as I have described it above, on paper and video. We have released a few staff from their normal duties on several days a week for this purpose. The primary aim of 'recording on paper and video' is to place the large amount of experience possessed by many people in some kind of order, to make it visible and accessible to others. We hope that this will make it easier to transfer this experience to parents and colleagues. These programme elements will also serve as modules in the training of new staff members. I know that several colleagues in a number of departments throughout Europe are currently working on similar projects. With the aid of the Euco Unit, I hope we shall succeed in making these products available to each other.
The Institute voor Doven has traditionally devoted a good deal of attention to scientific research, and has for many years had its own Research and Development department.
Two research projects are currently underway in the Rafael department. One project, led by Dr J Lancioni, is investigating the best ways of providing children with the necessary support to enable them to carry out tasks as independently as possible. A large number of research projects have been completed in our department under Dr Lancioni's leadership in recent years; all these projects concluded with a publication.
The research project led by Marleen Janssen was set up to investigate how competent behaviour can be fostered in deafblind children in interactive situations. This project attempts to make the children more competent in the use of their skills for showing their likes and dislikes clearly. At the same time an attempt is being made to teach adults to recognize when their behaviour towards the children has the effect of being supportive. In other words: what things that I do as an adult help the child to express himself or herself more competently and what things that I do make that more difficult for the child?
At the request of the editor of Deafblind Education I have tried to present an outline of the work carried out within our department for children who are deafblind.
No single article - no single book, for that matter - can however do justice to all the ideas and experience of parents and staff, nor to their dedication to put them to good use in the upbringing and education of deafblind children. We are therefore always delighted to be able to welcome colleagues to our Institute who wish to share our experiences. Above all we consider it very important to receive their feedback on our work. This is one of the ways in which we hope to be able to continue learning and developing. In order to maximize the benefit from visits from colleagues, and also to enable normal day-to-day business to continue running smoothly, we have organized these visits into three 'visitors weeks' per year.
One item which canno go unmentined is a very extensive article by Jan van Dijk, Marleen Janssen and Catherine Nelson entitled 'Deafblind Children', in which they describe the diagnostics, theoretical background and a number of important apects from the educational programme for children who are deafblind.
In conclusion: the objective of all the efforts made within the Rafael department is to achieve the best possible 'qualty of life' for all the children concerned, both now and in the future: a life in which they experience what it is to be 'heard and seen', a life in which they are allowed and are able to take pride in being human beings. It is my hope that this is the feature which more than any other characterizes the 'programme' of the Rafael department.
Ton Visser: Director, Rafael School. Deafblind Education: January -
June 1995. Pages 6 -10.