a different family

7/29/2019 A DIFFERENT FAMILY

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A DIFFERENT FAMILY - HAVING A VISUALLY IMPAIREDCHILD AND THE DEVELOPMENTS IN A FAMILY

By: Mrs Eliane Bonamie (Belgium)Orthopedagogue, co-ordinator of the home guidance centre for visually im

paired children

Co-author: Leen van BelleSocial worker at the home guidance centre for visually impaired children

Dear audience,My lecture is based on experience and examples in the work of early care in Belgium. Someof the families are Turkish. I hope that the ideas can offer inspiration to you,working in theTurkish society. Each parent, no matter what culture he comes from, will experience and gothrough the process of having a handicapped child in his own individual way. Wehave torespect this.

I hope that during this congress I can get some feedback. Thank you for that.

"You can't learn anything to someone, you can only help him to discover it insidehimself". Galile.

ABSTRACT.After 20 years of practical experience in early home guidance for visually impaired children,we would like to draw your attention to the family. After all, the child is immersed in thefamily system, and the child and parent-oriented work is continuously influencing each other.

During daily guidance, both parents and child are involved so that we can speakabout mutualenrichment. From a social and psychological way of thinking, we are formulatingsome ideasin which we are situating our way of working with the families of visually impaired children.Basic principles are: social, perspectives, deviation from the rule, shared territory, truth andinterpretations of the truth, everything is communication. We want to describe and illustrate astart of using these concepts.

1. INTRODUCTIONWe can look at the early home guidance for the visually impaired children from differentpoints of view. We can consider the guidance of the evolution of visually impaired children,but that is not what it is all about. We can also consider the guidance of the family with avisually impaired child. That is what we want to do. We want to describe the basic attitudefrom which the different workers (.) of our service act. This attitude may look


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familiar, tohome workers in families with children with a disability of a different kind.

(.) The workers of our service have various academic degrees: pediatrist,ortopedagogue, social worker, special educator, therapist. In the article below,we will callthem: 'HOME WORKERS'.

2. EARLY HOME GUIDANCE: A SHORT HISTORYThe foundation of the early home guidance centres in Flanders was based on threemotives:

1. The needs of the visually impaired children;2. The needs of the parents and the whole family;3. The social context: the integration of the impaired child in its natural environment.

The first years in the process of growth of a young visually impaired child areof the utmostimportance. The child is in full development and, as a result, its ability to correct andcompensate functional deficiencies is at its best. The parents of a young visually impaired

child will find themselves in a crisis and will have to cope with a number of difficult tasks.They will have to deal with the disability of their child emotionally and they will have to learnhow to handle their child. In addition, they have to get over the attitude and the reactions ofthe environment. They have to adapt themselves to the influence a visually impaired child hason the functioning of their family, on their marriage and on the social functioning of eachparent separately.

The first home guidance centres in Flanders started in the seventies as experime

ntal projects.In 1988, the centres were officially recognised by law.

3. PEDAGOGICAL FAMILY-ORIENTED MODELThe concept of family guidance is designed for each child separately, and is theresult of theneeds and demands of both parents and visually impaired child, linked to what we, as homeworkers, can offer as help.

We get our theoretical options from:1. Orthopedagogy and developmental psychology;

2. The social and psychological sciences;3. Paramedical and medical insights, in other words, ideas concerning education,development, family and society are a complementary source of inspiration.

The abovementioned is the basis from which we let our daily activities grow in the model forfamily guidance. We would like to illustrate some aspects of our journey.

4. CHARACTERISTICS OF THE FAMILIES


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YOUNG families with a YOUNG visually impaired child.

1. The centripetal lifecycleThe lifecycle refers to the phases of development of the family. Dependent on thedevelopmental tasks in the family in a certain period, we speak of alternate centripetal(internally directed) movements.Young families, extending themselves, use a lot of internally directed energy:- In order to take care of and educate young children. The visually impaired child needsmore attention;- Self-evident romance disappears in the relationship with the partner. The visuallyimpaired child sharpens the existing family patterns. The white spots in the parent'srelationship or the delicate balance between family and work can be consideredproblematic again. The relationship between the parents is under high pressure and, as aconsequence of the crisis, the family strengthens the centripetal forces which may causecomplete isolation.

2. Every family has its own life structure

A life structure refers to the organisation of a family: habits, rituals, the rules of the game, thenotions, role patterns, history. We recognise the single- parent family, the grandparents livingat home, the jumble family, the loose-sand family, the multiproblem family; theimportance of the extended family, of the members of the village. the culture of"We" inwhich the feeling of being a member of a group is important. Each family triesto find its ownway of integrating the visually impaired child into its organisation. The individual differencesvary greatly.

3. They become another kind of family by the arrival of a visually impaired childThe family is burdened with the feeling that it no longer meets the standards asto education,parenthood, being a good familyA different child can create a family of a different kind. Given the setting ofa disability in awider social context, the awareness of being the parents of a visually impairedchild has far-reaching consequences. The parents are aware of the fact that their educationaltask, which isalready difficult, may become even more difficult. The existing and self-evidenteducational

values lose their obviousness. The family begins its search for a new identity.

4. The visually impaired child brings some areas of tensionBecause of the visually impaired child, the family can end up in a long unexpected crisis, inthe course of which all kinds of states of mind alternate: fear, uncertainly, denial, doubt,rebellion, losing heart, having enough of it. There may also be moments of a newperspective,of satisfaction and delight, of quietness and delight, of quietness and a sense


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of well-being.This harmony can all of a sudden turn into disappointment and rebellion.They are all experiences that belong to life. The process of accepting is a road that neverends, and on which one constantly evaluates. It often looks as if you are walking on a roadwhere you find a lot of inconsistencies through which you trie to find reconciliation.

Let's have a closer look at some contrasts- Parents have to give their child the opportunity of expressing its feelings. But at the sametime, the parents are living through their own distress and disappointment. It is not easy atall to go into a full consideration of someone else's distress when you are verysadyourself.(Care for the child's emotions care for the parents' own emotions)

- Parents have to take care of their child, but as this child turns out to be aproblem child,parents have a lot of questions about its future. It is not easy to take care ofsomeone whileyou are burdened down with worries.

(Care for the child parents' own worries)- Only if the relationship between the parents is a very good one, they will beable to enduretheir troubles together. Living together with a visually impaired child may render therelationship between the parents more difficult. The understanding between bothpartnerscan become stronger but may also diminish.(a good relationship stress caused by the disability).

- The family finds itself faced with the task of leading a life as normal as possible. The

restrictions caused by the visual disability may result in the constant complication of a lotof aspects of a normal lifestyle.(the wish to lead a normal life disability causes restrictions)

- The parents try to deal with the consequences of the visual disability in an adequatemanner. In some cases, this may require of one or both parents that they introduce changes(mostly restrictions) in their professional situation. On the other hand, the disability caninvolve extra expenses.(restrictions in the professional situation extra expenses)

- Parents are constantly faced with the problem of reconciling the extra attention asked bytheir impaired child and the attention and care needed by their other children.(attention for the impaired child attention for the other children)

Helping, guiding and supporting these families is not an easy task. Moreover, home workersals have to live through and cope with their own emotions while empathising withthe child


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and its family.

5. Co-operation with families in early home guidance never starts with a clean startSome experiences in previous contacts with (medical) experts may have had an improvingeffect. Other experiences may have inflicted deep wounds, such as the first announcement ofthe disability, the advice in connection with referral, the reactions of the environment. Weoften hear the same story: an abrupt, over-simplified, far from hopeful announcement, noattention for the emotional life, constant uncertainty, contradictory advice, alack of set terms,an exaggerated display of professionalism. Parents are asking for clear and honest informationwith hope and time to accept.

5. BASIC PHILOSOPHYIn the social intercourse with people, we recognise the duality between:

1. Respect for the individuality of each person;2. Respect and attention for the social reality of every individual. The environ

ment of everyhuman being consists of a number of social contacts, values and standards.

If we now put our mind to the subject in relation to early home care, we discover twoimportant issues.1. Support of self-esteem, the creativity and the individuality of parents, child, grandparents,brothers and sisters, bearing in mind that their physical and emotional resources are notunlimited;

2. The constant attention for the family, the environment, the social values andstandards.

6. HOW DO WE LOOK AT THE FAMILIES?Some aspects.1. Values and standards in society and the art of being differentOr: to have an eye for the broad context in which the disability is situated and to learnhow to live in a lifelong situation of being different.

1.1 Social PerspectivesFew people realise to what extend their own behaviour is influenced by the expec

tationsof religion and people around them. That 'one' has certain ideas about how 'one'has tobehave or think in a particular environment. These rules are seldom written down, butstill they can be very determining for our daily life. These thoughts, these mirrors arecalled 'social perspectives' and can become an important form of social control.They areeffective in the various fields of life, such as parenthood, partnership, being


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the wife orhusband or child of someone, being a neighbour, an employee. So, one and the sameperson is subject to several social perspectives.

1.2 Social Perspectives in the field of educationWe now focus on the social perspectives in the field of education.In our practice, we notice an often recurring phenomenon: when something goes wrongwith a child, its parents very often feel guilty or ashamed. In a society whereexpectationsconcerning social roles (= being a member of the society) and concerning honour(=getting honour is a priority) are very high, the fact of having a child with problems can bea reason for feeling ashamed, or for being burdened down with the question of who is toblame. After all, everyone wants to have a perfect child, and there is not muchroom forerror. Society and religion set out standards that contain contradictions.

Some examples:- Children are treasures on earth and are very important for parents to become afull

member of the family;- Children are active, vital, adorable, and will become a good member of the group;- You should not cuddle them too much, nor should you treat them in a cool way;- You have to keep a close track of a child's evolution, but at the same time you have togive it the opportunity to develop its self-reliance;- You have to stimulate children, but you need to be careful not to overwhelm them withtoo high an expectation;- A son will succeed his father as head of the family.

1.3 Social Perspectives in the field of special educationBut what happens when your child is blind, partially sighted or multi-handicapped? Theoutside world is always present in the inner world of the educational environment.Whether or not the family is aware of it, grandparents, relatives, friends, neighbours,teachers to put it shortly, society is watching! (What if they knew what would theythink if.)

Parents of a visually impaired child feel that their family differs from the standard family.

These differences display themselves in a lot of daily activities, such as:

- A different organisation of the household.For instance: it may be very difficult to find a baby-sitter for a blind toddler. Theparents have to agree on their evening activities among themselves or on excludingsome social commitments.

- An attitude problem in social life.


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For instance: family and friends do not know how to behave while visiting the newmother and her visually impaired baby.

- Expectations in regard to the development of the child need to be adapted.e.g. Specific stimulation concerning the motor development of the blind child;e.g. Affection should be given according to the mental age of a multi-handicapped child instead of its calendar age;e.g. Going to an ordinary school is not so obvious and requires specific guidance;e.g. An overwhelming tolerance towards the handicapped child can lead to an attitudeof understimulation;e.g. The primary goal of education differs, to give the child a comfortable lifebecomesa priority;e.g. Shall the child be able to marry.

Those hundreds of moments a day will make a family feel different. This can heavily burdenthe members of the family.

1.4. Aspects of Care.

? during the process of early home guidance, it is important to support the parents in theircommunication and to focus on the exchange of information between family and society.

Aspects:- Being aware of what society expects;- Recognise and express one's own sensitivities concerning this subject;- To be able and willing to take notice of the fact that they are different;- Use the skills to handle all this so that the disadvantages one experiences become less;- Give information to ignorant third persons.

? For that purpose we offer them a safe place to experiment where they talk canabout'being different'. The home worker comes into the family as an element of socialreality,but the home worker has competence and is a professional in the education of visuallyimpaired children. The early home guidance may be a place where disappointmentscan bediscussed and successes can be celebrated. It may also provide the opportunity to havecontact with people who find themselves in the same situation.

This step towards the external world is not so obvious. On the one hand, the par

ents tendto withdraw from society because it is the source of all repression, disapprovalandcriticism on their being different. On the other hand, they need society to create a newidentity and to receive appreciation.

Home workers are also subject to social rules describing how good and adequate theyought to be.


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for instance:- God is powerful and what he gives is good;- You have to keep on believing that the situation will improve;- You are an adequate home worker when you solve problems quickly;- You solve a problem by talking about it;- You are always available;- Solutions and recovery will be found in the medical world;- The will of God is critical.

These expectations influence the relationship with the families in a permanent and mutualway. As a home worker, you belong to their separate world of 'being different'.

2. The shared territory.

2.1 Territory.The essence of territory is possession: we call a country, objects, privileges,rights aterritory. The possessive urge is territorial. A person's territory consists ofthose spheresof action in which he or she has a special ability, takes initiatives and bearstheresponsibility, in other words a field over which he/she exercises supervision.

Territorialbehaviour plays an important part in the organisation of the lives and the behaviour ofpeople and in the development of a group identity.

2.2 Education as a co-territory.The education of a visually impaired child becomes a shared area between parentsandhome workers. It becomes a co-territory. For instance: to make contact with andhandlethe visually impaired child, to stimulate its development, requires a specific behaviourIt is important for the parents to experience that they remain responsible for t

heir child inthis territory and that we recognise their engagement. The parents consult the homeworkers as experts who can support them in their own professional ability. (Theydo nothave a real choice nor a free one.) It becomes shared care within a common objective: 'lettheir child and their family function as good as possible as a full member of society'.

We should also take into account that the home workers enter into an important physicalspace of the parents who ask for help: we are visiting their homes. Indeed, the

homeworker spends a minimum of one hour a week in the house of a family which asks forhelp.

2.3 Aspects of care.A shared territory demands a negotiation about the tasks and the limits resulting in asatisfactory compromise for both parties.The negotiation contains, to name a few:


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- the recognition of the shared territory and its place within the communication;- the temporary sharing of the management of the territorial rights and the respect ofeveryone's capabilities.

For instance:The parents accept active concerning guidance focused on the development of thechild, butthey can refuse to talk about the relations in their family. This is a process in the course ofwhich one commits oneself more and more and the essence of parenthood is being questioned.This requires an open relationship based on mutual trust, intensive moments of communica-tiveness, respect for each others integrity and limits.Both parties have to look after their own interests but at the same time they have to maintainan atmosphere of confidence. It may be useful to lay down the first agreements concerning themutual expectation (how and under which conditions are parents and centre willing to co-operate).Sharing a territory may not always take place very smoothly. Some parents consid

ereducation to be their exclusive right, others abandon everything. Home workers may ignorethe limits of the family. A simple pedagogic advice with the best intentions often contains theimplicit expectation that the parents are going to apply the advice unconditionally. This maylead to a breaking point. The process remains an important assignment: for the parent to admitus, as well as for the home worker to enter into the territory. Without any doubt, it is veryimportant that we remain aware of the importance of the different territories, and remain so in

every stage of communication in early care.

3. The truth.

3.1 Truth.We can start from the basic assumption that a human being is always busy with his owninterpretations, definitions, determinations of the meaning of everyday events.We attacha meaning to facts under the influence of all kinds of circumstances in our environment.This environment is characterised by values and standards and by an elaborate network of

personal and social connections and relationships. Starting from this environment, everyhuman being creates his/her 'own truth', his/her own interpretation of the facts(variousworlds of meaning). Searching for THE truth becomes unnecessary.

3.2 Aspects of careThe early home guidance does not solve problems, but tries to get people to dealwiththeir problems in a different way.


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They cannot take the disability away from the child but they can support the family (andthe child). We try to learn them how to cope with 'being different'. In other words, theworker guide helps to build up a vision from which the family can go on living,oftensurvive.

For example:Women and men have different ways of reacting to the fact that they have a visually impairedchild. A woman might blame her husband that he cannot handle talking about the visuallyimpaired child, while he might reproach her that she has no time left for theirrelationship.Home guidance can contribute to solving this problem: the home worker can explain to thewoman in question that it is not uncommon that her husband reacts in this way; that manyothers act in the same way (= to make the information recognisable). He can explain that,while acting like this, her husband tries to deal with the fact of having a visually impairedchild and that this behaviour will allow him to handle the situation and to make

choices forthe child on a more rational basis (= to interpret the behaviour of her husbandin anotherway). It is obvious, there are not any rules for how to accept the fact of having a visuallyimpaired child.

It is important to be aware of the fact that the home guidance centre has its own truths andreasons as well, starting from typical, mostly change-oriented patterns.

3.3 Truth and communication.The attribution of a meaning to the facts is reflected in the communication with

thefamily. The communication studies teach us that everything is communication. Anythingwe do or do not do in regard to the family will be interpreted by them one way or another.Let's be aware of the power (to define in another way will give courage) and thetraps(differences in interpretations can create misunderstandings) of communication.

So, the early home guidance is a search for a kind of communication with the family andthe visually impaired child, in addition to which:- the centre tries to provide a vision from which the family can live;

- the family gets energy to go on growing, to adapt itself to a new situation whilemaintaining its integrity;- the family is able to take on the developmental tasks, also concerning the visuallyimpaired child;- the self-esteem of each individual is supported;- the family can restore order in its duties;- the guidance of a child's development is part of the communication with the family.


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7. CONCLUSIONThe home worker who wants to give home guidance to a family with a visually impairedchild., in a professional manner, has to stand side by side with them as a companion, as asupporting element in their difficult task of learning how to live a life of being different. Earlyhome guidance demands a flexible and creative attitude of the home worker. It presupposes aconstant integration into the organisation of the reality of the family with a view on socialrules, values and standards. It also presupposes a fundamental respect for people with all theirpossibilities and restrictions.

Or, to quote a colleague of mine:"In this fascinating, sometimes confusing and demanding reality of family life,the home careworker should be a gentle, encouraging tolerant voice. The voice of a listeningandsymphatising person; someone who can take control and lead the way, supported byhis own

expertise and skills, and who can do this time after time, over and over again."We repeat that our search for ideas is liable to adjustment, it is not supposedto be a closedframework.

"If you want to change the river's bed, don't stand in the middle of it. It doesn't work thatway. Rather stands at the river's bank and follow the movement of the water andlead it intoits new channel. that's the line to take." ERICKSON.

"You can't learn anything to someone you can only help him to discover it inside

himself."GALILEI.

Early Home Care presents a place to doubt and healing.

These statements seem very relevant for the home worker who gives support to a family witha young visually impaired child.

MULTI-HANDICAPPED VISUALLY IMPAIRED CHILDREN

By: Mr Eberhard Fuchs (Germany)

Distinguished participants,I am honoured and pleased to be invited to speak about the field of multidisability at thisimportant and outstandingly organized conference.

As we all know, the limitation of time does not allow us to go very deeply intothe educational


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problem of multidisability. Please, understand that my remarks will only scratchthe surface ina more or less technical way. A second point to take into account is the fact that I am in noway familiar with the cultured background of families with handicapped children,with specialservices by the government, schools, etc., in Turkey. The situation I am talkingabout is thesituation in Bavaria, Germany, in my institution, the Blindeninstitutsstiftung in Wrzburg. So,I beg your pardon from the very beginning on not being able to generalise.

Speaking about multidisabled, visually impaired children means to speak about more than70% of the blind children at schoolgoing age, at least in my country. Less and less visuallyimpaired children attend special schools for the blind, more and more multidisabled visuallyimpaired children replace the number of visually impaired children with normal intelligencein these special schools. The number of multidisabled visually impaired childrenis stillincreasing. So the teachers in the schools for blind people are facing other challenges than

those they had been trained for.Some remarks concerning the history of teaching multidisabled, visually impairedchildren.Maybe you have and had similar experiences to ours. When I started working as ateacher (25years ago) in the foundation for the blind in Wrzburg, Germany (Bavaria), this traditionalschool already existed for as long as 125 years. It has been a tiny little school, 6 teachers,some educators. In 1972, the Blindeninstitutsstiftung was asked by the Bavariangovernmentto provide services for multidisabled, visually impaired pupils. At that time, t

he authoritiesfelt that in the future, 40 children at schoolgoing age in Bavaria would need such a specialfacility. Twenty five years later, my institution is taking care of about 1,500multidisabled,visually impaired persons of different age groups:- Early Intervention (around 500 children): 0 - 8 years old;- School, preschool (around 600 children): 6 - 21 years old;- Sheltered workshops (around 300 adults).

The centre in Wrzburg became too small, satellite institutions had to be foundedin severalother cities in Bavaria, schools in Munich, Nrnberg and Regensburg, combined with

EarlyIntervention centres and, in addition, two more Early Intervention centres in Kulmbach andAschaffenburg. So on the whole:- 4 schools, 6 Early Intervention centres;- 2 sheltered workshops.

A short excursion to some interesting numbers of schools and pupils attending them(the numbers represent the year 1995):


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Which are the handicapping conditions of multidisabled, visually impaired persons (theresults are based on the children in our institutions):100% visually impaired85% mentally retarded70% physically handicapped45% suffer from epilepsy5% hearing deficiencies

56% of our children is profoundly, very seriously handicapped.

At this point, we need to think about:Who is identified as multidisabled, visually impaired?The E.B.U. accepted the following common description (developed by the commission formultidisabled, visually impaired people):

- there are at least two serious disabilities;- neither of these disabilities plays a dominant role;- the usual compensations and specific methods cannot be put into practice;- the multidisabled condition cannot by approached by solving separate problemsofseparate handicaps;

- a new approach has to be developed because multidisability is not characterised by one ofthe disabilities, but by the fact that the combination of these disabilities created somethingnew. Multidisability has its own identity.

Multidisability does not refer to a mental, sensory or other physical dysfunction, but to thecomplicated educational problem (compare Coen de Jong, 1987).

In our meaning, we should not speak of a multidisabled, visually impaired child,if forinstance the child in question is using a wheelchair, because that child is able

to follow theregular curriculum.

Having this definition in mind, the place for the required services needs to bea new type ofschool.

Remember:A mentally retarded blind child can hardly be helped in a school for the mentally retardedbecause of his blindness and in a school for blind children, he could hardly make use of thespecial techniques because of his mental retardation.

In several discussions during this conference, it became obvious that still there is no clear,common definition for 'multidisabled visual impairment'. Also, in Germany a strangediscussion is being held concerning the questions:- who is to identify a person as multidisabled, visually impaired?- which is the best place for providing services for multidisabled, visually impairedpersons?


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The consequences of these open questions are that we do not have a common systeminGermany for taking care of multidisabled, visually impaired children, youngstersand adults.This means that in a number of German states, there are special facilities for multidisabled,visually impaired persons, while other states have a kind of mainstream system with specialservices, and in some states there is no service at all. In some states, the educationaladministration beliefs that there is a need for special access, other administrations deny thisnecessity. What you could also think about is whether this meaning depends on theavailability of funds.

When we started offering institutional special services for multidisabled, visually impairedchildren, the minds of some parents gradually began to change. Years ago, therewas nospecial law requiring children to attend school, nor any special right for profoundlyhandicapped children to join a school programme. This situation changed in 1972.

There wasa clear agreement by all states that a handicap, however severe or profound, will not be in anyway a reason for refusing a child access to a school system. Some parents had the idea that"school is a place to learn to read, write, etc." But more and more parents became aware ofthe fact that a school is a field of education, a field of chances for their multidisabled, visuallyimpaired children. The self-help associations and the traditional schools for blind childrenfelt, at that time, that the major problem of a multidisabled, visually impairedchild is not his

blindness and therefore not a task for themselves. This understanding changed along timeago, not in the sense of: 'It is only a task of schools for blind children', but: 'It is also a task!'The meaning does not lie in the location, but in the special service.

In the last few years, more and more educational ideas in the educational departments inGermany showed a new view on providing special care for disabled people. The common ideais not to start by asking where to send disabled children, but by asking for their special needs.This means that if a multidisabled, visually impaired child has special needs of

improving hisvision, he has the right to attend a special programme. This could happen at home, in ahospital, in an ordinary school within a mainstream programme, in a school for mentallyretarded children, or in a school for multidisabled, visually impaired childrenwhere allservices, all special help is provided.

To summarise this point:


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- if it is possible to bring the needed services to other schools, a multidisabled, visuallyimpaired child could continue to attend his own school;- if the help a multidisabled, visually impaired child needs is too extensive, too special, itcould make more sense for him to attend a special school.

The Blindeninstitutsstiftung in Wrzburg provides both solutions, a mainstream system (forblind and partially sighted children in ordinary schools and for multidisabled,visuallyimpaired children in other special schools) and special facilities for multidisabled, visuallyimpaired children.

This is to state that a high percentage of all Bavarian multidisabled, visuallyimpaired childrenattend our schools, only a small number of them is still remaining in facilitiesfor mentallyretarded children. We feel that there should be a better answer from an institution for blindpeople to the questions of providing help for special needs. A lot of questionsreaching usfrom schools for physically or mentally handicapped pupils show and prove that t

he processof teaching and educating multidisabled, visually impaired persons often focusesinophthalmic questions and in very specific questions in the educational field ofvisualimpairment. Obviously, the educational aspect of visually impaired children should always betaken into account.

Providing a school system for multidisabled, visually impaired children demandsthefollowing conditions:

1) The classes should not be too crowded. In our practice, we provide classes with five or sixmultidisabled, visually impaired children;2) Individual special needs demand individual special help. That means that thisgroup needsat least two persons, at all times, i.e. a teacher and an assistant;3) All teachers need to have a university degree in special education (2 years)in addition to adegree as a teacher;4) A continuing institutional training and improvement - in our institution at least 40 hours ayear;5) Special needs require special professions. The teachers have to share their r

esponsibilityfor the children with other professionals not normally found in regular schools,such asphysical therapists, mobility specialists, occupational therapists, speech therapists, visiontherapists, doctors, social workers and more;6) A main point: a continuing, consequent and close co-operation with the parents;7) The other main point: the special needs require the help of different professions. For the


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multidisabled children, a multidisciplinary team is needed and a close co-operation andexchange between all the professionals of the team. Our institute provides paidworkingtime for this task.

Having the special needs of multidisabled, visually impaired children in mind, you will feelthat providing a school system for these children is not enough. Only a broad system,including:

- Early education (2 hours a week);- Schooling (6 - 21 years old);- Vocational training (at least 3 years)- Sheltered workshops (lifelong)- Residential facilities (lifelong)

will meet the needs of multidisabled, visually impaired children, youngsters andadults.

An institution taking care of multidisabled, visually impaired children has to have a high levelof responsibility:

- in organisational and structural realisation- financial resources- team co-operation

It is up to these institutions to form an entire special environment based on the needs ofmultidisabled, visually impaired children, youngsters and adults. Only if we areable tomobilise all available knowledge and skills of all educational and medical disciplines will webe reliable for these multidisabled, visually impaired children, youngsters andadults.

EARLY INTERVENTION CARE AS A PROCESS

By: Mgr. Terezie Hradilkov (Czech Republic)Director of Early Intervention Centres

Firstly, I would like to present to you the schedule of my lecture:

I. Introduction

About myself

About Early Intervention

About the Czech program 'Guiding' - goals, principles, team

Documentation

Feed back


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II. Process of EI

client find

reception of a client

parents' needs recognition

child assessment

comprehensive services - forms of support and therapy

interdisciplinary consultations

transition to a pre-school programmeending of care

III. Summary and recommendation

To your disposition are videos, photo documentation, publication of programme"Enlightenment and Public Education

I. Introduction

About myselfMy name is Terezie Hradilkov. I have been working with children and families for14 years.I started this work during my studies of special pedagogy at the Charles University in Prague.In the eighties, in our country there was a communist regime with very strong segregationapproach towards people with special needs. Therefore, we provided these servicesvoluntarily until 1989. After political changes we established Early Intervention (EI) as aprofessional service. Now I work as a director of the network of 6 EI centres, w

hich provideservices for families with children with visual and additional impairment. We are a non-governmental, non-profit organisation called the Association for Early Intervention.

About Early Intervention

Nowadays, there exist many different programmes of Early Intervention throughoutthe worldmanaged by different kinds of organisations and agencies ranging from state toNGOs, fromprofessional to self-help programs. They are home-based, centre-based or a combi

nation ofboth types. They are funded by budgets of Ministries of Health (USA), Education(Sweden),Labour (Germany). The result of the development of EI in last 30 years consistsof 3phenomena:

1. shift from institutions to homes of clients;2. shift from child-focused services to family-focused services;3. shift from expert approach (expert - client) to family support (mutual partne


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rship).

Now, I would like to specify what Early Intervention is. Although I don't want to bother youwith definitions, I start with two:

The first one is from Ohio, USA: EI is a system of services and programmes to meet the needsof the child and its family from the child's birth to the legal school age;

The second one is from The Czech Republic: EI is a system of services and programmes forchildren with impairments or at risk, and their families. The goal is to minimise theconsequences of impairments and to help a child, its family and society with socialintegration. EI programmes differ from school programs which children enter later on.

The role of parents and family members during the process of socialisation of children withvisual impairment has become more and more important in recent years. This, in fact, meansthat there is a process of big changes in contemporary EI. That process correspo

nds very wellwith EI services provided in the Czech Republic. These services are based on thetraditionalfamily values.

About the Czech programme 'Guiding'

(See Appendix: the map of 6 centres EI (370 clients) around the Czech Republic.)

The art of home visiting depends on:

- following clear goals and principles;

- forms and methods;- quality of the team.

Goals

to help the parents to be self-confident and responsible for the upbringing of their child;

to help the children minimise the consequences of visual (and other) impairment;

to help both parents and children enjoy the process of interactions.

Basic principles:

to respect the individuality of the child and the cultural, social and educational specifics ofevery family;

to help the parents and children to find their abilities and strength to cope with the handicap;

to support social integration of children with handicaps and their families.


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Team

Home visitors (EI counsellors):- special teacher- social workerVision stimulation instructorPhysiotherapistPsychologistParentsDoctorsAdministration worker

II. EI care as a process

You have heard that in both definitions of the EI the term 'system of services'was used.Which services are we talking about?

When and to whom are they provided?

To explain that, I have prepared an overview of the EI services process from finding clients tosaying them goodbye.

Client findEI begins when a client who could need these services is found. I prepared a table where itcan be seen who recommended our services to clients.

Table no. 1: PERSONS WHO RECOMMENDED EI SERVICES TO CLIENTS

(Helena Holubov, Mgr,: EI centres in the Czech Republic, 1995, thesis)

PERSON, NUMBER, %

Parent, 29, 11.42

Other person, 36, 14.17

Local authority, 28, 11.02

Doctor, 119, 46.85

Unknown, 42, 16.54

TOTAL, 254, 100

The 'other person' who recommended EI service was: a member of family (except parents),

day-care centre teacher, psychologist, physiotherapist in spa, parents of otherchildren withimpairment, etc.

You can see that most of the clients are coming to us from theirs doctors. Can we support thisphenomenon? Yes, on the condition that

1. we make doctor believe in the importance of EI (use positive examples);2. contacting us is very easy (use a leaflet which can be given to parents in hi


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s surgery);3. doctor respects us as professionals (visit conferences of ophthalmologists, publish articlesin special press for ophthalmologists, neonatologists, etc.).

Parents and other persons gain information about our service from newspapers, magazines orleaflets.

Summary: Give a short and clear information about sort of services you offer, type of clientsyou take care about and where you can be found.

Reception of a client

We do not accept information about clients if they do not know about it. I regret having to saythat this still happens in our county. If it happens, you have to be very diplomatic, especiallyif information comes from a doctor who refused to co-operate with you before. The parentsmust be asked whether they wish to be our clients and which kind of services they and theirchild need.

The most common way is that the parents are given a leaflet and that they contact the EIcentre directly. After that they are put into the accounting of clients.

Discovering of parents' needs

During the first visit, it is negotiated which kind of services would meet parents needs. If wewant to discover parents needs we have to ask simply:

- what can I do for you- what are your needs

- what services do you consider useful for you family/child

Do that before you read diagnosis of the child.

Assessment of a child

Again start with simple things and with contacting the child. Begin with observing child in hisnatural environment, listen to what parents say about their child. After this the teamassessment, documentation and diagnosis is evaluated.

Providing services

Table no. 2: COMPREHENSIVE SERVICES - FORMS OF SUPPORT ANDTHERAPY. Overview of forms of Early Intervention used in our centres in the'Guiding' programme:

Form-- Time Period

home-based

home visits-- 1x per 1 - 3 months/ client


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home visit including consultation-- 1x per 6 months / client

lending toys and literature-- 1x per 3 months

centre-based

one-day courses for parents-- 1x per 3-4 months

week programs for whole families-- 2x per year

vision stimulation assessment-- 2x per week

physiotherapy consultation-- 1x per 2 weeks

team assessment-- 1x per year / client

mothers meeting-- 1x per months

sent by post

bulletin for parents-- 4x per year

benefits counselling-- 1x per year

letters, support letters information-- according to needs

accompanying children and parents

to doctor, school, day-care centre to local authorities-- according to needs

Interdisciplinary consultations

Consultations can be divided into:

A. About a concrete client

1. consultation inside the team (EI counsellor and physiotherapist, both know the concretechild);2. consultation outside the team (EI counsellor and co-operating ophthalmologist)

B. About a specific topic, e.g. problems of visually impaired children withautism.

Themes of consultations are chosen according to parents wishes. Do not provide them withoutinforming the parents. Parents must also be informed about the results of the consultations.

Transition to a pre-school programme

- mainstreaming: when parents place a child in the common school within the community.The success of such a placement depends on whether the community feels the childandfamily as its part.

- special programs with handicaps: especially parents with children with multipl


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eimpairments choose special programs. It is because children are refused in common pre-school settings or are in need of special rehabilitation.

This means that EI services have to

1. support family in its activities within the community, accompany children andparents tothe chosen setting if they want;

2. support common settings in admitting children with impairments. (Provide themwithinformation, examples, show them photos, videos, support special training for the staff).

Ending of care

Ending of care can be difficult period for the family and the counsellor becausethey workedtogether for four up to six years, sometimes they became friends. We leave the child in adifficult period of time, when the child is going to school.

Documentation

All the process of serving clients is accompanied by the same attention to the child and thefamily. (See Appendix: the 'Form of visit')

Feedback

We choose the method of questionnaire for feedback. If we want to know the demands ofparents, we have to ask clients about their needs and it is important to know detailed

information about whether our services are still in connection with their demands.

Table no. 3: A SAMPLE OF A QUESTIONNAIRE FOR PARENTS

(Milena Jabrkov, Mgr.: Non-expert Attitude Used in EI Centres, 1996, thesis)

1. Parent's interest for EI Services

Yes.........................................98%

No.............................................1%

No decision...............................1%

2. Wishes on frequency of home visits

No decision................................2%

1x a month................................28%

1x two month............................35%


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1x three month..........................25%

1x half a year..............................7%

other wishes................................3%

3. Wishes on visits in regional centre

No decision..................................2%

Are interested..............................56%

No interest...................................26%

Not decided yet...........................16%

4. Interest of parents for follow upof the development of the child andinterview with psychologist

Yes........................................73%

No.........................................22%

Not decided yet.......................5%5. Interest in consultation withphysiotherapist

No decision..............................1%

Yes.........................................53%

No...........................................40%

Not decided yet.........................6%

6. Interest in consultation with lowvision therapist

No decision................................2%

Yes...........................................83%

No.............................................13%

Not decided yet...........................2%

7. Interest in one day seminar

No decision..............................2%

Yes.........................................50%

No...........................................27%

Not decided yet.......................21%

8. Interest in receiving of newsletterfor parents


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Yes.........................................89%

No............................................6%

Not decided yet........................5%

9. Interest in one week program

No decision.............................1%

Yes........................................54%

No..........................................24%

Not decided yet.....................21%

10. Interest in social events withfilm performance

No decision.............................2%

Yes........................................35%

No.........................................44%Not decided yet.....................19%

11. Interest in weekend rehabilitationmeeting

No decision....................................3%

Yes................................................40%

No..................................................37%

Not decided yet..............................20%

12. Interest in parent's club in regionalcentre

No decision.....................................29%

Yes..................................................25%

No...................................................46%

13. Interest in mother's evening club(without children)

No decision......................................21%

Yes...................................................21%

No....................................................56%

Not decided yet...................................2%

14. Number of returned fulfilled


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questionnaires in regions:

Praha, Liberec, .Budjovice................53%

Brno.......................................................21%

Olomouc, Ostrava..................................25%

But let me end with the words of one of my colleagues from the discussion abouttheevaluation of our results: "Maybe the best result is when the parents stop needing us. I thinkabout it every time, whether it's more sad or nice that they no longer need us."

III. Summary and recommendations

If I talked too much or if the described process seems to be too complicated, now I'd like torecommend you simple principles which can be easily followed. This will make theservicescheap and effective. Following principles are, in my opinion, the most important:

1) Ask parents what they need and which services will be useful for them. This w

ill saveyour time, work of your experts and make the contact with family easy going;2) Provide parents with the appropriate amount of information and let them decide. They willnot be dependent on you;3) All the children need more love than therapy. Despite the fact that you are professionalyou remain a human being;4) 80% of children coming to EI centres have residual vision. Help them to use it, they willbe able to help themselves later;5) When you visit parents with children in their homes don't forget that parentsalso need

contact with other families with similar experiences. Someone else can give themsomething what you can't;

ASSESSMENT OF LOW VISION

By: Mrs Lea Hyvrinen, M.D. (Finland)

The assessment of vision for educational purposes and early intervention comprises threemajor areas:

1. assessment of vision of children at school age with low vision but without otherimpairments;2. assessment of school children with visual impairment and one or several otherimpairments;3. assessment of vision for early intervention for pre-school children.

Although the assessment for early intervention is extremely important, at this meeting weconcentrate on the assessment of low vision at school age.


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The basic questions in the assessment of low vision at school age are:

How much vision does the child have for

- communication

- orientation and mobility

- activities of daily life (ADL) and

- sustained near-vision tasks.

With respect to children with severe loss of vision, there is one more specificquestion to be answered. We have to find out whether the child has enough visionto initiate communication.

The assessment is based on results of a number of clinical tests, observation during these testsand observations during different daily activities.

Although vision is a sensory function, its use is based on several motor functions. Therefore,

during clinical assessment we usually assess motor functions first, then sensory functions,and complete these findings with observations on the use of vision.

The order of observations is depicted in the following flow chart:

ORDER OF OBSERVATIONS

- the child uses one eye / both eyes - is binocular, dominance - alternates,-

how

_______________________________________

- Accommodation, fixation, saccades, tracking, convergence

- Strabismus, limited ocular motility

- Nystagmus, compensating head postures

The first question is whether the child uses one eye or both eyes. If the childhas twofunctioning eyes, is the use of vision binocular or does the child use alternati

ng fixation? Ifthe child is binocular, which eye is the dominant one? If the child uses alternating fixation,the type of alternation needs to be described.

Motor functions

The motor functions to be investigated are accommodation, fixation, saccades, tracking,convergence, strabismus and nystagmus.


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Accommodation, focusing the image so that it is clear at different distances does not developin all low vision children and is especially poorly developed in children with other motordisturbances, cerebral palsy, CP, being the most common condition combined withpoor orirregular accommodation.

Down Syndrome children are another large group of children in whom accommodationdoesnot seem to develop normally. Accommodation can be measured using either dynamicretinoscopy or by measuring visual acuity at a distance and near by. If near-vision acuity ispoorer than visual acuity at a distance and near-visual acuity is improved by reading lenses,then insufficient accommodation is the cause of poor visual acuity at near distances.

Fixation of gaze, looking at an object of interest, is another function that develops early innormally developing infants. Fixation uses either the centre of the visual field, foveal vision,

or - if foveal vision is damaged - fixation is based on the preferred retinal locus (PRL) that hasbecome the centre of the child's visual field. If the loss of central vision is recent and thepreferred retinal locus has not yet stabilised, fixation shifts from one locus to another. Thepreferred retinal locus may change also as a function of luminance level or thetext size to beread. The variation in the location of the preferred retinal locus can best be observed withSLO, scanning laser ophthalmoscope. SLO has taught us a lot about shifts in PRL. Thisphenomenon can also be studied with a poor man's technique by mapping the blind

spot whilethe person is fixating texts of different sizes or during varying luminance levels. Fixation canbe stable, unstable, or there is no real fixation but the gaze wanders without stopping at theobjects of interest.

The quick eye movements from one fixation point to the next are called saccades.They areused when we scan our environment locating numerous areas of interest. Saccadesare thebasic motor function when reading. Thus, if saccadic functions are not normal,we can expect

problems in reading when the usual reading techniques are used.

Tracking, or following of an object with gaze, is based on smooth pursuit movements. Theydevelop during the first year during which eye movements normally differentiatefrom headmovements.

Convergence, turning of the eyes inwards when looking at close distances, may beinsufficient


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in which case it is difficult to keep the images of the two eyes together to create single vision,i.e. one single picture despite the fact that we have two eyes. If convergenceis not powerfulenough, the images will fuse at near distances and the child sees double. School children mayor may not develop suppression mechanisms to prevent the disturbing other picture fromgetting into image analysis and may need to close one eye or use head turns.

Strabismus, squint, is more common among low vision children than it is among children whohave developed normal vision. Strabismus should be treated in low vision children in thesame way as in non-impaired children.

Nystagmus can be benign, inherited motor nystagmus, which is usually combined withreasonably high central visual acuity or sensory nystagmus caused by low vision.Quite oftenthe child has learned that in a certain head posture, the amplitude of nystagmusin at itsminimum. If the abnormal head posture could lead to changes in the structures of the neck,

prisms and surgery may be considered.Sensory functions

Visual acuity is measured with line acuity charts as defined by the internationalrecommendation on measurement of visual acuity. Line acuity means that the distancebetween the symbols is equal to the width of the symbols on that line and the distancebetween the lines is equal to the height of the next lower line. This type of visual acuity testshave symbols in a V-pattern. In some test charts there are more than one set of

the lowerrows.

Visual acuity measured with single optotypes can be several lines better than visual acuitymeasured with a line test. Thus the method used should always be clearly stated. In alltesting, it is good to define the test used and the distance applied. Then visual acuity valuesgive a better idea about the visual sphere within which the child uses central vision.

Near-visual acuity is measured using a near-vision card (Figure 1 A) with the sa

me symbolsused in the distance visual acuity chart. Near-vision acuity may be better thandistance-visionacuity when the child has nystagmus. Often it is worse, in which case near correction needsto be investigated.

Figure 1 A. Figure 1 B.

When the child is ready to learn to read, visual acuity needs to be measured wit


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h a test wherethe distance between the symbols is half of the width of the symbol (Figure 1 B). It gives agood approximate for the smallest print that the child can read. It should be remembered thatthis size is not the print size that the child should read at school. It is thethreshold size print.It is advisable to use print that is three to five times larger than the threshold. The print sizethat can be read fluently for a short time and the optimal print size when studying for longerperiods need to be assessed. This requires also the measurement of the visual field forreading.

Figure 2.

Grating acuity is good to measure also at school age if visual acuity is below 0.03, and in allcases when the child cannot respond in an optotype acuity test. It is especially important tomeasure grating acuity in brain-damaged children. During this measurement, wemay learnabout other changes in visual function. If the child cannot see the grating whe

n it is moved,but can locate and recognise it when it stops, the child is likely to have difficulties in seeingother objects in motion as well.

Contrast sensitivity measurement is not part of the assessment of low vision, not even in manyuniversity hospitals. The measurement is now so inexpensive and so easy and quick toconduct that there is no reason not to include it in routine assessment. The optotype tests arenon-illuminated charts (Figure 3 A) or back-illuminated translucent charts (Figure 3 B) that

can be used in the same lightbox as the high contrast visual acuity charts.


Visual functioning at low contrast is important in visual communication and fororientationand mobility. If the child cannot respond to the optotype tests, Hiding Heidi low contrastpictures (Figure 4) can be used to evaluate vision in the low contrast domain.

Figure 4.

The shadows on our faces are close to 2.5% contrast. Therefore, the distance wit

hin which thechild can see the 2.5% Heidi picture is the space within which the same child can perceive ourexpressions. It is important to demonstrate this distance to the parents, therapists and teachers,because it is not often known that when a child with low-contrast sensitivity looks at an adulthe actually only sees a shadow, nothing or very little of the expressions. The child's peersshould be aware of this problem as well, because children and especially teenage


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rs useexpressions and body language more than adults.

Contrast sensitivity measurement may reveal why a child does not function as expected on thebasis of the visual acuity value. In Figure 5 there are contrast sensitivity curves of threechildren whom I examined in Estonia a few years ago. Child A had nearsightednessof 15diopters but moved and played like a normally sighted child. His visual acuity was 0.3 and hiscontrast sensitivity was normal at the lower visual acuity values. Child B, whohad scars inthe corneas and in the retina, behaved like a low vision child bringing small objects close tothe eyes and moving slowly in the stairs. His visual acuity was 0.3 and his contrast sensitivitymoderately decreased.

Child C had not done well in the psychological tests and was thought to be mentally retarded.His visual acuity was 0.3 but his contrast sensitivity was so low that he most probably had notseen much of the test materials. Also in his experiences of the environment and

incommunication he has been severely deprived of information.

Thus we have a sample of three children each of whom has visual acuity of 0.3. One isnormally sighted, one has low vision and the third is severely visually impaired. This exampledemonstrates that one should always measure visual function at low contrast levels.

Visual field testing is a demanding test situation. If the child has had the opportunity toobserve the testing of an older child, Goldman perimetry may be successfully per

formedduring the first test situation. Often the size of the visual field varies fromone measurement tothe next even when there is no change in the actual size of the visual field. Therefore, it isimportant that, when possible, the measurements are made by the same person, preferably bythe doctor himself. Automated perimetry is such a difficult test that it can bereliablyconducted in older teenagers only. Automated perimetry in conditions such as retinitispigmentosa seems to overestimate the loss of function, so the result should always be

compared to the confrontation fields using finger perimetry or small moving targets on a pin(Sheridan balls or similar targets).


When Goldman perimetry is not available, the central parts of the visual field can beevaluated using the Damato campimeter (Figure 6 A) and the peripheral visual function using


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the Nef perimeter (Figure 6 B). This simple industrial funnel is particularly useful in theexamination of pre-school children. The original Nef perimeter is available inSwitzerlandand its foldaway variant is under construction. The stimulus in Nef perimetry is a smallpenlight that is brought close to the funnel surface without causing any noise.It is possible touse small flickering lights as the stimulus and thus measure the visual functionthat is usuallyforgotten, flicker sensitivity. Since motion perception is crucial for mobility, all field defectsfound with the other perimetric techniques should be evaluated using a flickering target. Thismeasurement requires further technical development before it is easy enough to use and thususeful in paediatric assessment.

Colour vision is often distorted in retinal disorders, but close to normal whenthe visualimpairment is caused by changes in the anterior parts of the eye. Since in school workcolours may carry crucial differentiating information, each child's colour vision capacity

should be known to the teacher. The PV-16 colour vision test (Figure 7) was designed forpaediatric assessment and evaluation of impaired vision at all ages. The surfaces of the colourcaps are covered with a thin layer of plastic and are thus less likely to be damaged by the littlefingers than the uncovered Munsel paper used in other tests. The colour surfaceis largewhich makes the caps like playthings. The colour stimulus can be reduced to thestandardsize by using grey rings on the surface. If a double set of the caps is used, it is possible toevaluate colour deficiencies starting from the age of two years or as soon as th

e child haslearnt the concept of 'same' related to colours.

Visual adaptation changes in a number of retinal disorders. We talk about nightblindness butmostly there is no real night blindness in children. Poor visual adaptation means that the timerequired for starting to see at a low luminance level is longer than in a normally sightedperson and/or the child is easily dazzled when coming into a brightly lit room or goingoutdoors. Measurement of the speed of visual adaptation is a quick and easy method to assess

retinal function. In everyday situations, cone function is more important thanrod function.Therefore, measurement of cone adaptation by using the CONE Adaptation test (Figure 8)allows follow-up of the child's visual adaptation to low luminance levels. The test is possibleto conduct when the child is able to sort the blue, red and white chips into three piles.

Photofobia is caused by several different changes in the visual pathways. In ac


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hromatopsiaand in juvenile macular degenerations, often also in retinitis pigmentosa, rod cells function inday light - apparently because there are too few cones to inhibit rod function -and, beingmuch more sensitive than cone cells, are overexposed by daylight. This may makethe imagedisappear in glowing mist. Children suffering from photophobia need carefully chosen filterlenses (Figure 9) that decrease transmission of bluegreen light that activates rod cells. Thefilter should transmit some blue light and the long wave lengths. Multi Lens (Box 220, S-43525 Mlnlycke, Sweden) has manufactured a set of nine filter lenses that absorb atdifferentwave lengths. They come with or without a polarised surface. The polarised surface makesthe filters pleasantly brown and thus cosmetically acceptable, an important feature especiallyin the teens . There are also dark variants of these lenses. All these differentfilters are neededin the assessment of children with retinitis pigmentosa like changes in the retina. In a recentexamination of eleven children with Usher syndrome, eight of the nine filters we

re used.Only the darkest filter with 550 nm transmission was not felt useful by these teenage children.The day was sunny but the snow was melting and it was not as bright as it can bein March.Thus it is possible that some of these children will find also the darkest filter useful nextwinter.

Filter lenses have a special quality which is difficult to understand or believeuntil oneexperiences it oneself, namely the subjective increase in brightness although most of

bluegreen light is absorbed and thus less light enters the retina than without the lens. Thishappens because rod cells function more normally when exited by a low luminancelevel atbluegreen light, and millions of sensitive rods are brought to work at the sametime as thecone vision is functioning.

Photofobia caused by cloudiness of the cornea or lens or by allergic reactions requires usualabsorption lenses that are now available in so many different colours that everychild shouldfind a tint that he or she likes. As with the filter lenses, the absorption len

ses, i.e. regular sunglasses, should be chosen by the child him- or herself.

Low vision assessment also includes fitting of low vision devices and observations on thechild's visual function during daily activities and orientation and mobility. Short workingdistances lead to poor posture if ergonomic questions are not solved. The effect of the child'svisual capabilities with respect to each school subject should be assessed so th


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at teachingtechniques and study materials can be chosen to meet the child's needs. This requires goodco-operation between the low vision team and the teachers and parents of the child.Conferences like this one in Ankara which bring together medical and educationalpersonnelwill improve mutual understanding and develop a language that is common to bothgroups.

Additional information is available at:http://med-aapos.bu.edu/leaweb/index.htmlhttp://www.lea-test.sgic.fi

POSSIBILITIES OF INTEGRATED EDUCATION

By: Mr Stef Pennings (The Netherlands)Co-ordinator at the Educational Institution CONVERGO

Ladies and gentlemen,

It is both a very great honour and a very great pleasure for me to be invited bythe Federation

of Associations of the Blind in Turkey to lecture at this national conference onthe Educationof the Visually Impaired in Turkey. And, it was a great pleasure for me as wellto have theopportunity to visit the schools of Mr Yilmaz and mr Gler in Istanbul last Thursday. As aman of practice, it was an eye-opener and the best way to start my visit to thisconference. Ihope that this conference will give an extra impulse to the development of special educationfor the visually impaired in Turkey.

I would like to start my contribution by quoting an American colleague:

"One of the qualities of being human is the ability to give and to receive support.

None of us is 'independent' in the strict sense of the word. Our independence depends on thenetworks of support we build around us" (Kate Moss/TSBVI Deafblind).

In terms of support within the network of visually impaired, I would like to distinguish thefollowing target groups:

-Parents need support from medical and educational professionals: they need to u

nder-standthe diagnosis their child receives and they need support in understanding the special educationprocess. They also need support from other parents of children with the same disabilities: toexchange information and courage and to form an idea of what tomorrow might bring forthem.

-Grandparents, siblings and other family members need support too. Like the pare


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ntsthemselves, they need information, understanding with respect to their own feelings andthoughts about having a family member with a disability.

-That children and young people with visual impairment need support seems obvious. Theyneed support from their own family, friends, classmates and teachers to make them feel anaccepted part of their community. But they also need support from specialised teachers theycan rely on.

-Professionals need support as well. If you will allow me to address all of us today asprofessionals in the field of visual impairment, I would like to make it clear that we in turn allneed support from the families and people with visual impairment. We need support to learnnew skills and to develop new techniques. We also need support to acknowledge that we donot have a ready-made answer to all the questions and problems that might occur.We needsupport from our colleagues who are also faced with the same questions. As profe

ssionals wealso have our duty to those people who are responsible for developing legislation.

-Legislators, local or regional governments, civil servants need support in preparing andmaking the right decisions for the visually impaired children and their parentse.g.:

- guarantee the availability of special education programmes;- financially assist the efforts of regional or local governments to educate children withspecial needs.

We all need to feel at ease with asking for support and we should be able to offer support tothose around us. None of us can really go it alone. You can work by means of a formalsupport group, such as colleagues, university courses, conferences, study visits, or by meansof sharing your questions with a friend or a relative; in both ways the goal isto build circles ofsupport to improve life for everyone, and, in our profession, to improve life for visuallyimpaired pupils or students.

Today, I would like to offer my contribution to such a circle of support. I am well aware ofthe fact that my situation in the Netherlands is quite different from the situation in Turkey.Therefore, I will not present a lecture here about "the best way" or "the ultimate answer to allyour questions", because in my country, we are in the ongoing process of developing ourcircles of support as well. I just hope you will be strengthened by the ideas you will hear this


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week - in lectures and in private talks- and will have the opportunity to incorporate theseideas into your present body of knowledge and experience. With all our differences, with thepossibilities and facilities of our own country, we have to set up and develop our ownnetworks, but by co-operating we can share the knowledge each of us possesses.

Schools for special education as the basis of all support.

Just as in The Netherlands, special education of the visually impaired in your country datesfrom the last century. In Turkey, it was the Minister of Education Munif Pasha who foundedthe first school for the blind in 1889. In Europe too, the education of blind children developedfrom institutionalised care for the handicapped in general, towards the end of the last century.The following years of this century saw the added development of special education forpartially sighted children.

In the times behind us, many people achieved very good results, with the means available to

them at that time. Attitudes towards people with handicaps changed in a positiveway. Withthe knowledge and possibilities available in past times, teaching methods and special aidswere developed for blind and partially sighted children. In our time, we are continuing on thebasis of the knowledge and experiences of our predecessors. Of course, I do notintend todiscus the entire history from the last century till now. After all, this conference has beenorganized with the aim of taking close look together at the future of special education of thevisually impaired.

My experiences and ideas, which I will present to you today are based on my workas ateacher within regular secondary education, as a special teacher for the visually impairedduring a period of seven years, my experiences as an itinerant teacher in secondary educationduring a period of 8 years and my position as a co-ordinator of courses and itineranteducational assistance for the visually impaired today.

One of the articles of mr Herman Gresnigt, which I was allowed to use for my preparation for

this introduction, says that the teachers at the schools for special education of the blind -education of partially sighted pupils followed later - have been the pioneers inthedevelopment of the integration of visually impaired pupils into mainstream education.In the seventies, they have paid good attention to the question of a number of parents whopreferred to send their child to a school in their own village or town, so thattheir child could


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live at home like other children.

With the relatively short travelling distances in The Netherlands, it soon turned out that thisquestion could be answered positively for a number of children. This marked thebeginning ofthe development of integrated education in our country. Later this morning, I will return tothis in more detail.

I share the opinion of mr Herman Gresnigt, and of many other Dutch colleagues, that the -itinerant - educational assistance of visually impaired pupils should be basedon qualitativelywell-functioning school for special education. In my view this applies to the visuallyimpaired, but to the hearing impaired and the physically impaired as well. It goes withoutsaying that the government and social tendencies have played an important role in this aswell.

In Turkey too, I do not think it will be hard to find highly motivated people who are prepared

to devote themselves to the education of handicapped children and who want to make aneffort for the development of special education. But good ideas and heart-felt motivationalone are not enough; in consultation with experts and people from the target group, thegovernment will have to aim for clear legislation and for finding the possibilities to supportthe developments with adequate funding (equipment of schools, training of special teachers,creation of the facilities for special aids). In The Netherlands, the Ministriesof Education,Social Affairs and Public Health play a joint role in this matter.

Of course I understand that statements such as these cannot be turned into reality in the shortterm in your country. But perhaps it will reassure you to know that other - European -countries needed quite some time before special education arrived at its presentlevel. I thinkthat this is a development which will never reach its final destination; the influences oftechnology, and the ever-changing insights within education and the upbringing of children,will keep it an on-going process.

Just now, I have indicated that the idea of integration originates from specialeducation. I hopethat, during this conference, I will gain more insight into the development of special educationin your country. On the basis of experiences in other countries, I still think Ican state herethat thinking about integration of the visually impaired into mainstream education is on theincrease, the more children, parents and teachers are confident of a "safety net" in the shape


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of a school for special education or, at a later stage, a Resource Centre.

Expertise of special schools: a reliable base for integration.

The educational quality of these schools for special education is expressed by:

-the development of special teaching methods (didactics);

-the development of special teaching material;

-the development of special aids;

-its being a centre of knowledge and experience with respect to visual impairment;

-training and coaching of special teachers and itinerant educational assistants;

-guidance and support for families;

-advice, guidance and support for local, regional and national government officials andpoliticians;

-co-operation with other services (e.g. social services, ophthalmologists and health centres).

I would like to offer you some insight into the various types of integration ofvisuallyimpaired pupils into mainstream education. These various types are well described as steps ofgood practice in literature and by means of lectures on meetings about visual impairment inthe past years. The goal of every described type of integration is to educate visual impairedpupils together with seeing classmates in their own environment and if possibleon a

mainstream school.

Models of - integrated - special education for the visually impaired.

Basis: Schools for special education with a boarding-house? no integration.- Sighted pupils integrated into a special school for visually impaired children;- "Guest pupils" from special schools for visually impaired children in mainstream schools;- Visually impaired pupils visiting a mainstream school for one or two days; from being aguest, a pupil can gradually develop into a fully integrated pupil;- Visually impaired pupils integrated into mainstream education as much as possi

ble, bymeans of "resource classes" with specialised, integrated staff;- Visually impaired pupils integrated into mainstream schools with the help of part-timespecialised teachers and mainstream teachers in one class;- Fully integrated visually impaired pupils with support on a distance from a ResourceCentre and with teachers who followed special courses;- Fully integrated visually impaired pupils with itinerant support close at handand the


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special school as a Resource Centre.

As I said before, each country makes the choice best suited to its own situation: referring to itshistorical background, the organisation of the national education in general, politicalpossibilities, distances, infrastructure, financial possibilities, co-operationwith parents: allplay an important role.

Based on my own experience I am convinced that within the group of visually impairedpupils, a number of pupils will remain dependent on special education; some fora short timeand some for their full school period.

Various reasons can underlie this:

*children who become partially sighted or blind at a later age and consequentlyneed to learnbraille and writing within a very short time, for instance;

*children with severe learning problems in addition to their visual impairment;

*children with serious behavioural problems in addition to their visual impairment;

*children who are functioning on a low level in addition to their visual impairment;

*children who are only eligible for integration at a later stage of their development;

*children who get stuck in mainstream education and who will temporarily benefitfromspecial education.

In other words, the facilities for special education and integrated education with support ofitinerant teachers are in line with each other and link up perfectly in case such is necessary. Itfollows that most special teachers who will work as itinerant teachers in the future will remain'special-education-based' or will receive their training from a Resource centre.

Together with their colleagues, they will control the continuous process of thedevelopmentand assistance of the education and upbringing of blind and partially sighted children. In atown or a region, they will jointly form a source of knowledge and experience fo

r everyonewho comes in contact with a visually impaired child.

With the greatest respect for what has been developed in Turkey up to now, I hope that mylecture, on the basis of my day-to-day educational practice, has provided you with a numberof ideas, which we can also discuss informally these days. In my second contribution of thismorning - together with one of your countryman - I will work out the model of in


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tegratedspecial education in The Netherlands.

I also would like to express the wish that this conference will give a positiveimpulse to thedevelopment of care for visually impaired children in your wonderful country. Weasforeigners hope we can add some of our ideas to the development of the long-range masterplan of the experts in your country. I am very honoured you have taken the timeto listen tome; I wish you a lot of mutual inspiration in your own part of this development.Hopefully,my contribution will help you further on the right way.

I thank you very much for your attention.

DEVELOPMENTS IN THE - INTEGRATED - EDUCATION OFVISUALLY IMPAIRED PUPILS IN THE NETHERLANDS

By: Mr. Stef P.M. Pennings (The Netherlands)Co-ordinator at the Educational Institution CONVERGO

Ladies and gentlemen,

This morning, I have already spoken to you about the possibilities of integratededucation.I am very honoured to have the opportunity to inform you in my second contribution about thedevelopments in special - integrated - education of visually impaired pupils inThe Netherlands,referring to the educational institution for visually impaired pupils CONVERGO.I am workingfor this institution as a staff member and as an itinerant teacher in secondaryeducation.

You are probably all aware of the fact that in comparison with Turkey, The Nethe

rlands is arather small country. The number of Dutch inhabitants is about 16 million. The territory ofTurkey is about 18 times as large as the territory of the Netherlands. By car ortrain, we canreach each part of our country within no more than three hours travelling. The country and thecities all have a well-organised infrastructure. I tell you this, because I think it is important tokeep in mind when talking about the organisation of special education and when thinkingabout the organisation of resource centres or itinerant teachers visiting mainstream schools on

local or regional level. Like I said this morning, you have to deal with the availablepossibilities and facilities in your own situation, so I tell you now about theDutch situation.

Distributed over our country, about four different organisations are working with visuallyimpaired pupils aged from 4 to 21. All of these organisations still have a smallboarding-house, special schools for blind and partially sighted pupils, course centres an


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d departmentswith itinerant teachers. At the moment, these four institutions together supportabout 2,000children and youngsters, either at one of the special schools or by means of support byitinerant teachers.

The educational institution CONVERGO is situated in the southern part of The Netherlands.The Netherlands know regional centres, a national vocational centre and a national centre fornon-educational support as well, but in my contribution I will limit myself to the educationalprovide of our work.

In this brief explanation, I will tell you about the developments in integratededucation in mycountry and I am very proud to I have the assistance of mr Halit Yurdusen, one of my formerpartially sighted pupils, who will address you in Turkish after my lecture. He is an example ofa partially sighted pupil who attended primary and secondary special education on theConvergo institution and received itinerant support during the period of the dev

elopment ofintegration in our country. I think he can tell you much better than I about hisexperiences as apartially sighted pupil during this developmental stage. Together with you, I amlookingforward to his contribution, but first you will have to do with me for a littlebit longer!

WHAT IS ITINERANT EDUCATIONAL ASSISTANCE?

Itinerant Educational Assistance is additional support for visually impaired pupils, to enablethem to attend mainstream education instead of special - secondary - education,

which wouldhave been the case without such support. This assi

a different family

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