Low vision in early intervention services for children with visual impairment in Europe
Marianna Buultjens, United Kingdom

Plenary session 1 - Early intervention, Monday 10 July 2000, 9.00 - 10.30


Introduction

I am very pleased to have been invited to contribute to this first plenary session on Early Intervention. In his recent article in the British Journal of Visual Impairment, Herman Gresnigt (2000) mentioned that the last ICEVI-sponsored conference on this topic took place in Edinburgh in 1988. I was a member of the organising committee of that conference and have always regretted that Early Intervention lost its independent status within ICEVI. However, with more than thirty abstracts submitted on this topic, (Gresnigt, 2000), the opening plenary and a final day on Early Intervention, there are signs that ICEVI is recognising the importance of getting things right at the early stages.

Some of you will be experienced practitioners in the area of Early Intervention. Others will not be so familiar with what happens before your pupils and students arrive in school or college. I will be talking from my own experience as well as documented evidence and you will have to forgive my generalisations when they occur. I have dropped the term ‘with multiple disability’ from the given title and will explain why in the course of my talk .I will give an account of the development of services across Europe and a description of what they provide. Finally I will consider ‘Visions and strategies for the new century’.

Development of services across Europe: 1952 to the present.

When I started teaching in a school for the blind in 1975 many of my pupils had been boarders at the school since they were two years old. .This had been very much the norm in the UK and other parts of Europe and came from a view that young blind children needed some special help that only professionals could give. When did this view start to change? A Comenius funded project on Low Vision in Early Intervention in Europe has conducted research into Early Intervention services for children with visual impairment. From responses to the questionnaire circulated by the Comenius team Sweden has been identified as the first country to move from institution-based provision out into the community in 1952.. Sweden was gradually followed by many other countries in Western Europe in the following three decades. The nineties saw a flowering of services in Eastern Europe..(For further details on this aspect and others of the Comenius research please attend the lecture and poster session given by the Comenius team headed by Prof. Renate Walthes.)

The first services were usually started by organisations which were already providing education for blind children such as Tomteboda Resource Centre in Sweden and Royal National Institute for the Blind in the UK. The new services were influenced by the child development theories of Piaget and later by the work of psychologists such as Selma Fraiberg. Current theories of parenting, and behaviourist approaches were also incorporated. The models of service varied. Depending on the number of staff employed, this could mean infrequent visits with the home visitor helping the parents in their understanding of where the child was developmentally, what the child could or could not see and how the parents could help their child’s development. On the other hand, some services provided weekly visits with a highly structured programme. Some services were home-based only, others combined visits to the home with centre-based work. Versions of these two approaches are still in evidence today.

Not all of these early services provided for the needs of children with multiple disability and visual impairment (MDVI). It was only in 1974 that legislation in the UK recognised that these children had a right to educational services. Up until then, they had been considered ‘ineducable ‘ and had been the responsibility of the health services.

Increasingly during the years up until 1989, the rights of parents to be equal partners was recognised in theory, if not always in practice. Concepts of quality provision and evaluation of services depended more on the attitudes of those providing the services than on the demands of those receiving them. Often examples of outstanding quality, particularly in the assessment of young children with visual impairment, depended on individuals or teams of people working together and disappointingly some of these disbanded as people moved on. Multi-disciplinary teams comprising people from education, psychology, medical and para medical backgrounds developed in the seventies and eighties. I firmly believe that if I had not had the good fortune to work with professionals from other disciplines from the time I started in Early Intervention I would not be talking to you today . Learning from and with these colleagues opened my mind to possibilities I would never have dreamed of on my own.

From 1990 there has been a flowering of Early Intervention provision in Eastern Europe. Some services existed before, for example, in former Czechoslovakia, but in the main, provision, if it existed, had been institution-based and unlikely to include children with multiple disability and visual impairment. Another new element was the cross-border and international collaboration. Many new Early Intervention services in Eastern Europe have been developed thanks to financial aid and professional expertise from mainly non governmental organisations from countries such as Germany and the Netherlands. The heartening thing is that teams from these countries have been working not as ‘missionaries’ to convert the locals to their ways of doing things, but instead as ‘facilitators’ to help local people develop services which will suit the local culture and needs.

Present Practices

What is the purpose of Low Vision in Early Intervention? There seems to be general agreement across Europe that early intervention should foster development of children from birth, taking into account the individual circumstances of the child and family. It is very unlikely that any services would exclude children with multiple disability and for many services these children will be in the majority. That is why I changed the title of my talk. The ‘low vision’ aspect acknowledges the vital role of vision in development and aims to establish the extent of existing or potential visual functioning, and to identify which daily activities the child will carry out as a ‘seeing’ or low vision child and for which activities the child will need to develop non-visual compensatory skills. Current characteristics of low vision programmes are the involvement of multi-disciplinary teams, along with parents, in assessment and setting goals for visual development or acquisition of compensatory skills. The programmes normally incorporate structured and unstructured activities to encourage visual attending, following, and looking and enabling the child to make use of these skills for social, motor and cognitive development in daily routines. Enjoyment and achievements, no matter how small, are seen as vital ingredients for both the child and family.

Parental partnership is being taken very seriously indeed, with advocacy and other self help schemes developing. Some services start with the family and community and provide services as they are requested or as the need emerges rather than offering a pre-existing list of what can be provided. Many countries have adopted the Salamanca Declaration on the rights of the child, and access to appropriate and inclusive education, from the earliest stages, is being enshrined in law. These are great steps forward but provide new responsibilities and demands on parents and professionals alike. Our European countries are very much multi-ethnic and we are or should be aware of any shortfalls in our own provision for black and minority ethnic families and children. In my own country of Scotland we have become sensitive to this only in the recent past and know we have much to do to ensure that Early Interventions services reach and are appropriate for these families.

The principles and jargon of business practice have also invaded Early Intervention: service-based contracts and the setting of minimum standards and quality targets are now in the vocabulary and practice of Early Intervenors. In some cases this is no bad thing. In Scotland we are asking for more public accountability. as Early Intervention services are at present excluded from the system of inspection.

At previous ICEVI conferences, many papers on early Intervention were mainly descriptive of services. This conference will provide us with many examples of practitioner-based research into Early Intervention practice. Confidence to subject ones practice to systematic review and evaluation is a sign of a mature discipline. Hearing from the practitioner-researchers will help newer services and less experienced professionals to plan, evaluate and adapt .

Unfortunately, even today, not all Early Intervention service providers have good working relationships with ophthalmologists, or are able to work collaboratively with other professionals such as psychologists, orthoptists, speech and language therapists, occupational therapists or physiotherapists. Part of the problem may be that these professionals are in short supply and visually impaired children are seen as a minority group coming far down the list of priorities. Let’s hope it is not due to the old and pernicious view that for children with severe and complex learning difficulties, visual impairment is the least of their difficulties!

Vision and strategies for the new century.

I am not much given to looking into the future and although I must confess to reading my Horoscope in the newspaper, I also have to confess to only believing the nice things it tells me! Of course I want the future for early Intervention to be a very positive one but I can’t ignore issues such as financial limitations and policy decisions taken by local authorities or organisations which might limit the potential of our services. However, I am also a great believer in what committed individuals and teams can achieve and the potential of communal experiences, such as this conference, to take forward ideas and practice.

Trans-disciplinary working.

Up until now I have used the term ‘multi-disciplinary’ which implies a certain separation. Trans-disciplinary implies not just joint assessments and planning but learning from each other and incorporating this new knowledge in our work. This is already happening in some parts of Europe and we must share with each other at this conference how this can be encouraged.

Learning from advances in ophthalmology and Neurology.

In my twenty-five years in the field of visual impairment I have seen amazing changes. Many of the children I first taught were blind because of cataracts. In the developed western countries this no longer happens. Many of the pupils and then the babies I worked with in the past were blind or severely visually impaired because of Retrolental fibroplasia and then Retinopathy of Prematurity(ROP). Because of advances in care of pre-term babies and medical treatment, ROP is disappearing as a cause of visual impairment (Jacobson,p24,1998).

However, more and more of our children in Early Intervention are premature babies with visual and other processing problems. In the past these were described by the blanket terms of Cortical Visual Impairment/Blindness. Now with the help of paediatric neurologists and ophthalmologists we have been made aware of functional problems and agnosias that mean that some of our tried and tested strategies for ocular visual impairment will not work for these children and that we will have to develop new methodologies (Jacobson,1998).To ensure a happier future for these children early diagnosis, trans-disciplinary assessment and development and sharing of appropriate intervention techniques must be high in our priorities.

Training and Research

Some of the papers which will be given at this conference describe work which is already being done on new approaches to the challenges just mentioned. Others describe a scientific approach to service development and evaluation. Researching our practice and sharing the outcomes is vital to progress. The concept of the practitioner-researcher is not new but needs to be adopted by the majority of practitioners not just the few. The world wide web now leaves us few excuses for not reviewing what we do in the light of others’ evidence-based practice.

Could this be one of the ways forward to solve the problem of providing appropriate training for Low Vision early Intervention specialists?. Our next speaker will tell of a university based training course and later in the conference the Comenius team will report on a new basic curriculum for people working with children with MDVI which will be available on the internet. Well-trained professionals are vital and we must go forward from this conference determined to ensure a Europe-wide effort to improve the quality of our training for Early Intervention specialist.

Parents

Professional perception of the role of parents in Early Intervention over the past fifty years in Europe has changed slowly but inexorably. from seeing them as being ‘important’ in an ill-defined way, through a ‘partnership’ which was mainly conducted on the professionals terms, to a more equal though sometimes uneasy partnership. In my own country of Scotland I have in recent meetings with parents of younger children and babies been delighted and excited to find that it is the parents who are leading the way. They are finding out for themselves, sometimes ahead of the professionals what their children need. They are gaining the confidence to ask politely for, or if necessary, demand the appropriate services or treatment. I have also been pleased and relieved to discover that many, if not yet all, professionals, whether they be medical, para-medical or educational are also mature and confident enough to accept this informed and appropriate lead from parents. I would like to end by showing you a ‘vision’ for the new century. It is a picture of little Kirsty, whose parents, by their involvement and with help from enlightened practitioners from several disciplines, have ensured that despite the absence of a final diagnosis of the cause of her visual impairment, she has had her vision refracted and glasses prescribed by the time she was three and a half months old.Isn’t she a lovely ‘Vision’ to encourage our strategies for the future?

References

Gresnigt,Herman, ICEVI Europe: Leading up to Cracow in British Journal of Visual Impairment, vol 18,No 2, May 2000
Jacobson,Lena,Visual Dysfunction and Ocular Signs associated with Periventricular Leukomalacia in Children born preterm. Karolinska Institute, Stockholm 1998.

Address:
Marianne Buultjens
Scottish Sensory Centre/Moray House
Holyrood Road, EH8 8AQ Edinburgh, UK
E-mail: Marianna.Buultjens@ed.ac.uk


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