Warnock (1978)

Notes on the text
Preliminary pages Membership, Contents, Introduction
Chapter 1 General approach
Chapter 2 Historical background
Chapter 3 Scope of special education
Chapter 4 Discovery, assessment and recording
Chapter 5 Children under five
Chapter 6 Schoolchildren with special needs: introduction
Chapter 7 Special education in ordinary schools
Chapter 8 Special education in special schools
Chapter 9 Parents as partners
Chapter 10 Transition from school to adult life
Chapter 11 Some curricular considerations
Chapter 12 Teacher education and training
Chapter 13 Advice and support in special education
Chapter 14 Other education service staff
Chapter 15 Health service and social services
Chapter 16 Relations between professionals, confidentiality and coordination of services
Chapter 17 Voluntary organisations
Chapter 18 Research and development
Chapter 19 Priorities and resources
Summary of recommendations

Appendices

Appendix 1 List of contributors
Appendix 2 Categories of handicapped pupils
Appendix 3 Possible grid as basis for statistical returns
Appendix 4 Organisation of health service
Appendix 5 Research project on services for parents of under 5s
Appendix 6 Research project on pre-school education
Appendix 7 Research project on employment experiences of handicapped school leavers
Appendix 8 Survey of teachers' views on special education

Index

Report of the Committee of Enquiry into the education of handicapped children and young people

London: Her Majesty's Stationery Office 1978
© Crown copyright material is reproduced with the permission of the Controller of HMSO and the Queen's Printer for Scotland.

ISBN 0 10 172120 X

Chapter 9: Parents as partners
[pages 150 - 161]

INTRODUCTION

9.1 We have insisted throughout this report that the successful education of children with special educational needs is dependent upon the full involvement of their parents: indeed, unless the parents are seen as equal partners in the educational process the purpose of our report will be frustrated. But the parents with whom we are at present concerned (mainly, though not exclusively, those of more severely handicapped children) have burdens to bear of which other people may have no conception. It is therefore an essential part of our thesis that parents must be advised, encouraged and supported so that they can in turn effectively help their children. The evidence we have received strongly confirms this view. For instance a local association of parents of ESN children wrote as follows (and they may be allowed to speak for others as well):

'Parents almost always care for a child for a larger part of each day than any professional. They endure the disturbed nights and the disruption of social life which a handicapped child brings. Their view of the child is vital to any treatment plan and their cooperation vital to its success. No attempts by teachers or other professionals to communicate with parents about their children are a waste of time. It may take parents years to understand or to spare the energy to respond. Parents of an ESN child may be assailed by guilt, shame, frustration and disappointment but almost always they will want to listen to someone who is on their side in efforts to love and understand the child. It is for the professionals to persist and persist in explaining, giving practical advice and listening to the parents' story.'

9.3 Just as the special needs of children take a great variety of forms, so do those of their parents. Any discussion of these needs in general terms must not be allowed to obscure the truth that they are individually 'special'. Wherever we refer to parental needs in this report we are mindful that no two cases are the same; that each represents a unique combination of distinctive strands. The needs of an individual parent will clearly reflect the nature of his child's disability, particularly its degree of severity and the weight of dependence upon parental and family support that it entails. They will also reflect the family circumstances. Cramped or inconvenient accommodation (such as a top flat in a tower block) will obviously severely hamper parents in looking after a disabled child: likewise a large family, particularly where there are young children, imposes its own constraints. Parents are obviously more able to cope if they are themselves in good health, are free from financial or other anxieties, and have helpful neighbours, relatives or friends. The point needs no further elaboration.

9.4 Nor is it simply a question of practicalities. Some children with disabilities are more resilient than others in striving to overcome them. Equally parents differ widely in their attitudes, temperament, insight, knowledge, ability and other personal qualities - all of which powerfully influence the extent and nature of the help that they require. Indeed, the problems of some children may stem from disturbed relationships within the family and will need to be tackled from that standpoint.

9.5 All these factors go to make up the particular needs that parents have. Some parents may merely wish from time to time to discuss their difficulties with someone who can shed light on particular aspects of dealing with them. Others will require elaborate advice and practical help, sometimes intermittently but more often on a regular and continuing basis. Between these two extremes there lies a gradation of intensity and complexity of individual needs, which are, moreover, dynamic and which change with time. We are therefore looking for a pattern of flexible services for parents which matches the different forms of help that they require, not only when the needs arise, but also as they develop thereafter. Special arrangements may need to be made to help parents of children from ethnic minorities who have difficulty in speaking and understanding English.

9.6 We make a further, general point of great importance. We have chosen the title of this chapter deliberately, as expressing our view of the relationship between parents and members of the different professions who may be helping them at any time. It is a partnership, and ideally an equal one. For although we tend to dwell upon the dependence of many parents on professional support, we are well aware that professional help cannot be wholly effective - if at all so - unless it builds upon the parents' own understanding of their children's needs and upon the parents' capacity to be involved. Thus we see the relationship as a dialogue between parents and helpers working in partnership. We prefer this description to others such as 'counselling', which may wrongly suggest a one-way flow between those who dispense and those who receive enlightenment. Professionals have their own distinctive knowledge and skills to contribute to parents' understanding of how best to help their handicapped child, but these form a part, not the whole, of what is needed. Parents can be effective partners only if professionals take notice of what they say and of how they express their needs, and treat their contribution as intrinsically important. Even where parents are unable to contribute a great deal themselves, at any rate to start with, their child's welfare will depend upon the extent to which they understand and can apply the measures recommended by professionals and can help to monitor their effects. Parents will often be able to point to an aspect that the professional has overlooked or has insufficiently considered.

9.7 In this chapter we bring together and summarise the forms of support that we believe parents are entitled to expect from the different services which contribute to the education of children with special needs. We begin with those aspects which will be handled within the dialogue to which we have referred. We then turn to the point of contact with the various services that every parent needs and deal finally with the forms of relief that should be available to parents to assist them in coping with their handicapped children.

I DIALOGUE WITH PARENTS

9.8 Parents of children with special needs require three principal forms of cooperative support - information, advice and practical help. If support is to be effective, it must be given promptly and consistently. For many parents the need begins as soon as their child is born.

Information

9.9 Whenever a child is discovered to have a handicapping condition his parents need to know what is wrong with him. It is sometimes a delicate and difficult task to impart this information and we have discussed in Chapter 5 how it might best be handled when a disability is revealed at or soon after birth. Whatever the timing or manner of the discovery, however, parents should be taken into professional confidence. They should be informed of the nature and degree of severity of the disability and its possible consequences for the child. Even where the parents had previous suspicions the confirmation that their child has a handicapping condition is bound to come as a shock, and may well lead to a sense of helplessness and isolation. It is therefore essential that when told of the existence of a disability parents should also be informed of the range of facilities and supporting services available to help them and their child. The services will include genetic counselling where a disability may have arisen through hereditary factors.

9.10 As we pointed out in Chapter 5, a number of useful leaflets has been produced on services available, both nationally and locally, for children with disabilities or significant difficulties. It is very desirable that a collection of such leaflets should be available locally in an information centre: this might be in, say, a citizens' advice bureau, the premises of a voluntary organisation, a toy library, a school, a college, a general practitioner's surgery, a child health clinic or a hospital. Some resource centres on handicap already exist to provide this information. Where the centre is set up in an institution with other functions, a special room should wherever possible be set aside so that parents of children with special needs can enjoy a measure of privacy in studying the literature and meeting other parents with similar concerns for discussion and exchange of information.

9.11 We also drew attention in Chapter 5 to the need for a comprehensive handbook for each area giving information about local facilities for children with special needs and their parents. We recommended that, where such a handbook or pamphlet is not already available, it should be produced under the aegis of the appropriate Joint Consultative Committee (or in Scotland the appropriate Joint Liaison Committee). It will need to be kept up to date if the information is to continue to be useful. We recognise that parents of young children with special needs are likely to be particularly concerned about the educational facilities available, especially where the child's needs are such that they may need to be recorded by the local education authority under our proposed system of recording. We therefore recommended in Chapter 6 that each local education authority should produce and keep up to date a handbook containing details of special educational provision in its area for children recorded as requiring such provision, in particular information about the types of special educational need catered for in individual schools and details of the officers of the local education authority concerned with the provision of special education. This information might be provided as a section of the comprehensive handbook about local facilities or as a separate publication.

9.12 We believe that parents of children with special educational needs cannot receive too much information about the special provision made in individual schools. We welcome the Circulars issued by the Department of Education and Science and the Welsh Office in November 1977 providing guidance on the kind of information which should normally be made available to parents about the schools their children are attending or may attend. (1) The guidance should include the name, address and telephone number of the school, the hours during which it is open and the dates when terms begin and end, the names of the head teacher and senior staff, the number of pupils, the characteristic features of the school and how the teaching is organised, details of extra-curricular activities and information on how parents may arrange to visit the school. Although the Circulars refer only to ordinary schools, we consider that equivalent information about facilities in special schools must also be made available to parents. Moreover, the information about ordinary schools suggested in the Circulars will not be complete unless it provides details of any special educational facilities that the schools provide.

Advice and support

9.13 The dissemination of information in these and other ways about the services available to children with special needs will go a long way to show their parents where to look for help. Such help will include advice and practical support, and much of it will be organised within the special education advisory and support service proposed in Chapter 13. We make no apology for repeating that the relationship between parents and those professionals who help them is a reciprocal one. It is of course very necessary that each professional - teacher, doctor, nurse, health visitor, social worker - should be knowledgeable about the application of his particular skills to children with special needs: it is no less important that he should exercise his skills in alliance with the parents and shape his contribution around the parents' own understanding of what is required. This makes heavy demands upon the time of professionals. But unless they can devote as much time as is necessary to parents and are actively concerned to work with them in partnership their contribution cannot be fully effective. The research into services for parents of handicapped children under five which was undertaken for us under the co-direction of Professor Chazan and Dr Laing revealed that from the mother's point of view medical teams often seemed to be operating without including the parents of the child. The report on parents' opinions in one of the areas in the survey stated: 'From comments it was obvious that for many parents their perception was of a "them" and "us" situation with the specialist treating their children, often very skilfully, without a great deal of reference to them.' (2) There is a lesson to be learned here by all the services concerned in meeting children's special needs.

9.14 We drew attention in Chapter 5 to the importance of peripatetic teachers in providing support for parents of young children with special needs, and the necessity for expanded peripatetic teaching services to cover all types of disability and disorder. These teachers will be responsible for devising appropriate educational programmes which are suitable for the parents to carry out. They will help parents to work with their children and by working directly with the children will themselves provide a model of how such programmes can be effectively carried out. They will direct parents to such other advice as may be needed. These tasks will require the ability to work sympathetically with parents and to share the concerns and problems of parents. The teachers will need insight and skill in judging how far they are able to help directly and when to call on others. They will need to be prepared for these tasks by suitable training and to have close contacts with colleagues in the proposed special education advisory and support service and with members of other services.

9.15 The nature of the parents' attitudes to a child with a disability or significant difficulty and the support which they are able to give him may determine not only the rate of his early development but also the ease with which he can be integrated into an ordinary school. As we indicated in Chapter 7, problems in integrating children in ordinary schools may sometimes stem from their incomplete acceptance by their family. Where this circumstance exists parents will need help in dealing with it. The need for help may persist well beyond the child's early years and we would expect the professional who serves as Named Person for the parents (see Section II) to be able and ready where necessary to introduce them to someone qualified and ready to give such help.

9.16 In some families of children or young people with special educational needs, wider problems may arise which call for additional support. Sometimes, for example, problems associated with a child's disability or disorder may give rise to marital tensions or even breakdown or may adversely affect other children in the family. Such difficulties are better prevented than tackled after they have appeared. They can be overlooked altogether by hard-pressed services working to the limits of their resources. We see scope for voluntary organisations as well as the local health, social and other services in helping to forestall or mitigate the strains and stresses that handicap can bring to any family.

9.17 The need for personal counselling of adolescents and young adults is discussed in Chapter 10. It should not, however, be forgotten that the parents may also need advice on how they can contribute to their children's future life through a more complete understanding of the personal problems that their children may face. Here also, the Named Person, who will usually at this stage be the careers officer or his specialist colleague, should point the parents to sources of skilled help that may be needed.

9.18 Advice is by no means exclusively the province of professionals. Non-professionals have much to offer too, particularly in the field of human relationships, and may have one advantage over professionals that they are less constrained by time. Where they have intimate knowledge of a particular disability, because for example either they, or perhaps one of their children, suffer from it, they may be able to offer advice of a very special value. It is important that all who undertake advisory work, professionals as well as non-professionals, should have adequate and appropriate training. However, we would emphasise our view that the effective giving of advice is much more than a question of technique. Above all, it calls for knowledge shaped by experience, discrimination and human sympathy. Not all of these qualities can be taught.

9.19 The relationship between parents and the school which their child is attending has a crucial bearing upon the child's educational progress. On the one hand if parents are to support the efforts of teachers they need information and advice from the school about its objectives and the provision being made for their child: on the other, a child's special needs cannot be adequately assessed and met in school without the insights that his parents, from their more intimate experience of him, are able to provide. Close links between schools and parents must therefore be established and maintained, as we have stressed throughout this report.

9.20 Formal means of collective cooperation between parents and the school may be established by the appointment of parent representatives to governing bodies, as the law already requires in respect of school councils in Scotland, or through parent-teacher associations. The case for parental representation on the governing bodies of ordinary schools in England and Wales has been urged by the Taylor Committee. (3) Parent-teacher associations have proved to be a useful way of bringing parents together and establishing closer relationships between them and teachers. For individual parents however there can be no substitute for personal access to the school whenever they require information about their child's education or wish to discuss his progress. It is essential that parents of children with special educational needs should have the opportunity to visit their child's school regularly and without ceremony and be able to talk to his teachers or to the head teacher who, as indicated in Section II, is likely to be their Named Person. Where a child is attending a day special school in the same area but some distance from his home the local education authority should be ready to consider using school transport to help his parents to make such visits, or should be prepared to assist them with their expenses. We urged in the last chapter that parents of children attending residential special schools should have opportunity to visit their children at school or to have them at home at weekends if they so wish. In these circumstances the staff must regularly advise the parents about the best ways of reinforcing the work that their children are doing at school and of maintaining any programmes of treatment during weekends and holidays.

9.21 We have stressed the importance of the contribution which parents can make to their child's educational progress. Its importance should not be underrated either by the parents themselves or by the school, whether it be an ordinary school or a special school. However, some parents will not, for a variety of reasons, realise the value of their reinforcing what is done in school, while other parents may feel diffident about offering their contribution to what they see as a matter for experts. It is for these reasons necessary to create a climate in which parents are encouraged to have an active share in meeting their child's special educational needs. This is particularly necessary where a child's difficulties come to light for the first time in the school setting. We envisage that some parents might be invited to spend some time in their child's school on a regular basis and be assisted with their travelling expenses to do so.

9.22 Some appointments have been made in schools of teacher-counsellors, guidance teachers or home-school liaison teachers with responsibilities for working with the parents of pupils who have special needs and for maintaining the school's links with other services and agencies. For example, one primary school in the East End of London for children categorised as ESN(M) has appointed a 'teacher for home and school contacts', with a part-time teaching commitment, who visits children's homes and tries to promote greater understanding between parents and teachers by organising weekly afternoon visits to the school by small groups of parents, Saturday outings for parents, and children's and parents' evenings. Such teachers can effectively promote good relations between home and school and we see scope for their further appointment in both ordinary and special schools. In addition, as we explain more fully in Chapter 14, many special schools will also need the services of social workers.

9.23 We particularly commend, as an example of the other ways in which schools may work with individual parents, the use of home-school notebooks, in which teachers and parents record progress made at school and at home respectively. We have seen a number of successful examples of the use of such notebooks in special schools, which we believe could be extended to children with special educational needs in ordinary schools. They can help to encourage parents to take a close interest in their child's education, and the progress recorded can be a source of information and encouragement to parents, children and teachers.

9.24 We identified in Chapter 5 a range of different forms of skilled support that should be available, separately or in combination, in every area for parents of children under five with special needs. They included home visiting teaching services, parents' workshops, playgroups and opportunity groups, nursery schools and classes and day nurseries. Some parents of children with special needs may themselves take the initiative in organising group activities. We referred in Chapter 5 to the group meetings organised at Southend for parents of Down's Syndrome children and their successful leadership by parents. There, training in group leadership comes about through participation in the group, and several highly competent leaders have emerged. The main conditions for the successful development of such groups appear to be: professional recognition of the parents as the key to child development; the initial help of a committed professional or parent with successful experience in this field; a capable group leader; well coordinated services for children with special needs so that parents are referred to a group as soon as possible; and the availability of the right kind of professional support whenever a group runs into difficulties. Besides the indirect benefits which they bring to the children concerned, the advantages of groups of this kind are that they reduce the isolation felt by many parents, by enabling them to share their feelings and ideas with other parents; and they give parents the satisfaction of learning how to encourage the development of their children's skills from birth, or at least a very early age. Local education authorities, social services departments and health authorities should make facilities available and actively encourage and support such groups.

Practical help

9.25 Depending on the nature of their child's disability or difficulty the parents of children with special needs require above all practical help. We have in different chapters called attention to forms of practical help that are already available and suggested improvements where we see deficiencies. Mobility and attendance allowances are critical for those parents qualified to receive them in respect of their children. Both they and many other parents have great need of help with the provision of transport - to visit school, hospital or clinic, to enable their children to take part in social activities of various kinds, or perhaps to take their disabled child on an outing or a similar excursion. Voluntary organisations are particularly helpful in these matters, both in the direct support that they can give and in their ability to involve parents in the actual arrangements. Some parents need practical help in providing, maintaining or modifying aids or appliances of different kinds or in rearranging accommodation at home in ways which facilitate the movement of their disabled child. The need is for prompt, effective and efficient help. Delay, for whatever reason, is damaging both to the child and to good relations with the parents.

II A SINGLE POINT OF CONTACT

9.26 As we indicated in Chapter 5, even if information about supporting services is readily available, many parents will be unable to make the best use of such services without help. We therefore recommended that one person should be designated as Named Person to provide a point of contact for the parents of every child who has been discovered to have a disability or is showing signs of special needs or problems. The main function of the Named Person will be to introduce parents to the right services or, in the case of parents of children showing signs of special needs, to ensure that any concern which there may be about their child's development is followed up. We envisage that in most cases the health visitor will be the Named Person in the early years, and as the child approaches the time for going to school she will be able to facilitate the change from home-based to school-based education by making suitable arrangements with her successor as Named Person within the education service.

9.27 We consider that all parents of children with special needs should be able to look to a Named Person to provide them with a single point of contact with the local education service and expert counsel in following their child's progress through school. We have considered the suitability of various professionals for this assignment, including the educational psychologist, the adviser in special education, the education welfare officer, the teacher with training in social work and the school-based social worker. The consideration that has weighed most heavily with us is that most parents who are seeking advice about their child's progress in school turn naturally in the first place to the head teacher. He, for his part, is favourably placed to stimulate the interest of diffident, discouraged or apathetic parents and is, moreover, an easily identifiable person whom parents should have no difficulty in finding and contacting, especially if information about the school is issued to parents as proposed in paragraph 9.12. We therefore recommend that the head teacher of the child's current school should be the Named Person for most parents of school children with special educational needs. The parents should be told that the head teacher will be their point of contact for information and guidance about their child's progress at the same time as they are informed of the results of the assessment of their child's special needs at one of the school-based stages of our proposed assessment procedure.

9.28 In primary schools and small secondary schools, the head teacher should usually be able to act personally as Named Person for the parents of those pupils who require special educational help. Even in large schools the head teacher should continue to retain responsibility for acting as Named Person, although he may have to delegate much of the day to day work which the function of being Named Person entails. Where this is the case, the person to whom. the work is delegated should, wherever possible, be a member of staff with training and expertise in special education.

9.29 Some parents of children with special educational needs may wish to discuss the suitability of the provision being made by the school for their child with a professional in the education service who is outside the school. We therefore recommend that, in addition to having a point of contact in the head teacher, parents should have direct access to the proposed special education advisory and support service. They should be able to obtain from the local education authority's handbook information about how to make contact with members of the service. Arrangements for them to contact members of the service may also be necessary during the school holidays.

9.30 We pointed out in Chapter 5 that, where a young child has severe or complex developmental problems requiring multi-professional assessment at Stage 4 or 5 of our proposed procedure, it may be more suitable for the Named Person to be someone with particular expertise or interest in the area of the child's disability. We consider that this will also apply where a child of school age is referred for multi-professional assessment at Stage 4 or 5 and, in the light of a profile of his needs drawn up by the multi-professional team, is recorded by the authority as requiring special educational provision. In this case the Named Person will need to be someone familiar with the child's particular form of disability; in contact with members of a range of specialist services; prepared to provide considerable support for the parents not only during term time but also during school holidays if required; and able to follow up the child's placement and at the right time arrange for its continuing suitability to be reviewed.

9.31 We regard it as axiomatic that the parents should be able to continue to consult the head teacher of the school in which their child is placed - whether the same school as before or a new one - after a decision has been taken by the local education authority to record him as in need of special educational provision. But they may also need someone to whom they can turn outside the school. We therefore recommend that the Named Person for the parents of a child recorded as requiring special educational provision should be someone designated by the multi-professional team which assessed the child's needs. The identity of the Named Person, who will normally be in the education service, should be conveyed with the completed Form SE4 to the officer of the local education authority responsible for the SE Forms procedure. Where a decision is taken to record the child as requiring special educational provision, the parents should be informed of the identity of their Named Person at the same time as they are told of their child's being recorded. As we proposed in Chapter 4, the identity of the person designated as Named Person for the parents of a child recorded as requiring special educational provision should comprise part of his record, and the documents forming the record should be readily accessible to the parents.

9.32 When a child who requires special educational help but who is not recorded moves from one school to another, whether or not in the same area, the head teacher of the new school should succeed that of the child's former school as Named Person and should contact the parents at the time of transfer. Where the move entails a change of local education authority and the child has been recorded as requiring special educational provision, the documents comprising his record, including the identity of his Named Person, should, under our proposals in Chapter 4, be passed to the new authority. The assistant education officer for special education in the new area should ensure that a new Named Person is designated, normally with qualifications and experience similar to those of the previous one, and the parents informed of his identity. The Named Person in the area from which the child has moved should satisfy himself wherever possible that the parents know the name of his successor and where to contact him.

9.33 We recognise that the arrangements made by the multi-professional team for a Named Person for the parents of a child recorded as requiring special educational provision may sometimes prove unsatisfactory. It is important, therefore, that parents should have access to an officer of the local education authority who can introduce them to another professional better placed to be their Named Person. We recommend that they should be given the office telephone number and address of the officer who completed their child's Form SE4, that is either the adviser in special education or the educational psychologist.

9.34 The need of parents for the services of a Named Person in the circumstances that we have described will continue up to and beyond the time that their child leaves school. Moreover, during the transition from school to adult life the need for a Named Person will be shared by the young person himself. In the next chapter we propose that the careers officer or, in the case of young people with more severe or complex disabilities, the specialist careers officer is likely to be the person best placed to provide such a continuing link.

III RELIEF

9.35 Where children with severe disabilities are living at home, their parents need periodical relief from their day to day preoccupation with looking after them. A day out or a short holiday with other children in the family or an opportunity to do some of the things that have had to be set aside, such as decorating a room, visiting friends or relations or reading an interesting book - in fact all the normal activities that most families are able to take for granted - can be a luxury for some parents of severely handicapped children, particularly where there are no friends or relatives conveniently placed to lend a hand. The sudden occurrence of an emergency such as illness or death among the family or near relations can present insuperable problems if no relief is available. We therefore recommend that a variety of forms of short-term relief should be available to parents of children with severe disabilities who are living at home.

9.36 There should be opportunity for parents to seek, if necessary at short notice, the presence of someone who can look after their child at home for part of a day or even a day or two whilst they are attending to family business or need to be away from home for any reason. We have heard with interest of a community befriending system in one town in which a volunteer family is matched with and provides social support for a family with a handicapped member. We envisage that a stand-in or befriending service would be provided by the local social services department, in cooperation with voluntary organisations in the area. We return to the contribution of voluntary organisations in providing social support for families in Chapter 17.

9.37 Longer-term relief can be provided in a number of ways. Some purpose-built day schools for physically handicapped children have small residential hostels attached to them where children (not necessarily pupils in the school) can be looked after for short periods when parents either need a rest or have unforeseen or inescapable commitments. In other cases, children are admitted to hospitals. In some areas this may be the only place able to receive them. We regard such placement as a last resort and urge that wherever possible other facilities of a non-institutional kind should be provided, such as care in homes or with foster parents which some social services departments are able to arrange. An arrangement like Honeylands in the West Country (4) can be very beneficial in combining proximity to the paediatric service of a district general hospital with effective day to day relief for parents in which they may participate if they wish. As we indicated in the last chapter we see much greater scope in future for the provision by boarding special schools of short-stay facilities for severely handicapped children whose parents and families need a break from looking after them.

9.38 One complaint often heard from parents, where their children are already attending school, is the lack of support during school holidays, particularly the long summer holiday. As we indicated in the last chapter, there was some support in the evidence for a four-term year in special schools. Our own view is that special schools should be in step with ordinary schools over the organisation of the school year, but that arrangements should be made for the premises of some special schools to be available for at least part of the school holiday. This would require local education authorities (or the governors in the case of non-maintained schools) to provide for people to be in charge of the premises and their use during these periods. We recommend that ways of enabling the premises of some special schools to remain open during the school holidays should be further considered by the local authorities' and teachers' associations and, where appropriate, school governors. We envisage that the use of school premises during holidays will in future become a much more widespread practice than at present.

9.39 It is sometimes forgotten that even with considerable support parents of children with severe disabilities may be facing such chronic stress that residential placement is in the long term interests of both child and family. However, recent official emphasis on the advantages of community care as against residential placement has led to many parents being pulled in two directions. On the one hand they may be intolerably overtaxed in trying to look after a child with severe difficulties, yet in agreeing to his going away they may be beset by feelings of guilt induced by suggestions that they have somehow failed. It is important that parents whose children leave home for residential education and care are encouraged to overcome this feeling, so that what should be a relief does not become an additional anxiety. When it is available the kind of intensive support provided by voluntary organisations such as the Invalid Children's Aid Association will be particularly beneficial.

CONCLUSION

9.40 The form and extent of parents' need for support will depend on a multiplicity of different factors, including the nature and degree of their child's disability or disorder, his age, the family circumstances and, not least, the parents' own resources and independence. The support, however and wherever given, must be seen as taking place within a partnership between parents and the members of the different services. To the extent that it enables parents more effectively to help their children at home and at school the support should be an integral part of the provision made for children with special educational needs, which parents have the right to expect.

References

(1) DES Circular 15/77, Welsh Office Circular 15/77, Information for parents (25 November 1977).

(2) For details of the research project see Appendix 5.

(3) A new partnership for our schools Report of the Committee of Enquiry appointed jointly by the Secretary of State for Education and Science and the Secretary of State for Wales under the Chairmanship of Mr Tom Taylor, CBE (HMSO 1977).

(4) Brimblecombe FSW, 'Exeter Project for Handicapped Children', British Medical Journal 1974, 4, 706-709.