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Mental Handicap: The World Scene

From: Speeches Of Rosemary F. Dybwad
Creator: Rosemary F. Dybwad (author)
Date: 1975
Source: Friends of the Samuel Gridley Howe Library and the Dybwad Family


Kings Fund Centre , London, 1975


The International League of Societies for the Mentally Handicapped, founded in 1969, brings together parent sponsored associations from all over the world. In Britain, France, Yugoslavia, and Denmark, in New Zealand and Australia, in Japan, India, Hong Kong, and Indonesia, in Ghana and Kenya, Poland and Spain, across Latin America and on the Caribbean Islands, there exist parent associations, functioning on every level of the "developmental continuum."


The League in 1975 has some 85 member societies in 60 different countries, and every year more are being added.


Concerned parents in India or in Brazil, in New Zealand, Lebanon, Mauritius, or Belgium are, of course, primarily motivated by the desire and the duty to get help for their handicapped children. Yet they soon learn that the help the child needs must come from services -- educational services, vocational services, residential services, guardianship services -- and to secure them, the parents must band together with the other parents, must keep the pressure on public officials and legislators, and must enlist the aid of professional workers and civic organizations.


It is this basic similarity of their needs and concerns that has provided the strong impetus for the parent organizations and has made them, throughout the world, among the most visible and potent consumer groups in the field of human services. And it is this that underlies one of the International League's major functions, the exchange of information.


There is no one country which has all the answers for coping with the problem of mental retardation. New discoveries are made, new developments take place in many countries, and one of the main functions of the parent associations has been to act as an international communications network to make new developments more widely known and to insist -- and insist -- that the authorities put this new knowledge to use.


Here, may I say, lies the difference between the International League and its professional counterpart, the International Association for the Scientific Study of Mental Deficiency, officially established in 1964. In its congresses, which meet every three years, the IASSMD provides a forum where researchers and persons from the many disciplines involved in providing services present new findings, critiques of previously formulated theories, and evaluations of existing services. But the IASSMD as such does not formulate policies, does not propose new services. It provides a presumably neutral ground for professional interchange.


The International League, on the other hand, is an action oriented organization, and the most notable of its many policy statements is the Rights Declaration it promulgated in 1968, which subsequently, in 1971, was adopted by the General Assembly of the United Nations, and is, without doubt, the single most important and influential document in the field of mental retardation.


Let me give you one example of an area where action initiated by the parent sponsored association has led in many countries even to a change of its own name, such as the change in the USA from National Association for Retarded Children to National Association for Retarded Citizens. That mentally retarded children grow up to become mentally retarded adults might not strike you as an example of new knowledge, yet if one takes a look at the way programs are developed and implemented it becomes very obvious how few services there are available for the adults, how little recognition there is of what mentally retarded adult persons need and what they can contribute, and anyone who takes a realistic look at programs for retarded children will see how far we still have to go in preparing them for adult living.


Traditionally, we have seen the answer to the needs of the mentally retarded essentially in medical and educational programs; indeed, for many of the mentally retarded even the need for educational programs was denied. However, when we look at the many years they will spend out of school as compared with the years they spend in school, then we recognize strikingly different and important program needs for which as yet we have made too little provision.


Measures need to be taken to provide the necessities of life for these handicapped adults -- in particular, financial assistance, opportunities for meaningful occupation, and other aspects of adult living such as health care, social activities, and spiritual life. There is an urgent need to recognize that mental handicap is rapidly becoming a major program area in social service, calling for action from that sector of our public life. All of this adds up to a multitude of legislative proposals, organizational changes in public services, different patterns of staffing, and new budgetary requirements, for which both initiative and support had to come from the parent sponsored associations. It also involved the seeking of new alliances with practitioners in disciplines previously not concerned with mental handicap, and the sometimes traumatic and not infrequently controversial lessening of dependence on professional groups that had assumed an all-too-paternalistic, domineering role in the field.


Thus the movement initiated and carried by the associations for the mentally handicapped is in ferment almost everywhere. There are striking similarities in their patterns of organization and development, but also some acute disagreements as to the future role and function of the associations, the kind of membership they should attract, the way in which they should seek financial support, and the specific programs they should pursue.


A clearer perspective can be achieved from a view of the historical developments of the movement, using the last three decades as a frame of reference. The 1940s saw the beginnings of parent groups, most of them either fairly closely tied to a particular service such as a residential institution, or else themselves managing a self-help project, a day school, or a recreation program. Fairly soon the need was recognized for a broader base, for the development of a national concern and national action.


Thus the decade of the 1950s saw the development of national organizations which derived their strength from a network of local and regional state member associations. The emphasis at first was still largely on cooperative self-help action but was increasingly broadened to include demands for governmental assistance and the recognition of the need to work with experts from various professions. Primary emphasis still focused on providing direct services for retarded children.


The third decade, the 1960s, might be called the decade of sophistication. It brought a more realistic recognition of the immensity of the problem of mental retardation, both in terms of the numbers affected and the multiplicity of services required during one retarded person's entire lifetime. The need for broad, multi-faceted governmental action was recognized, and in many countries the associations called for and aimed at participation in government commissions to study the needs and coordinate more effectively services for the mentally retarded.


While there had been some international communication in the form of personal visits and correspondence between leaders of the movement in various countries from the early beginnings, the 1960s saw the realization and recognition of a formal international organization, the International League of Societies for the Mentally Handicapped.


The 1970s seem to have led to a period of organizational introspection. As Dr. Sterner of Sweden expressed it recently, the associations are asking themselves, "Who are we and what do we want to be?"


Earlier this year my husband and I had the opportunity of serving as consultants in assisting a task force of the Canadian Association for the Mentally Retarded to review its purpose/ function, and organizational structure. While the Canadian Association may, in certain areas, be farther advanced than those in some European countries. Dr. Sterner's survey confirmed that the following excerpt from the (unpublished) Canadian task force report represents the trend toward which the longer established organizations are moving.


Associations for the Mentally Retarded, like any other social institution, are operating in a world which is changing for mentally handicapped people just as it is changing for all of us. Such associations have to take account of current trends which are bound to affect the way they go about their primary aim. These trends suggest that the associations can best meet this challenge by:


a) assuring the handicapped individual services in his own local area


b) assuring him services which will tend to integrate rather than segregate him from the ordinary patterns of life in that area


c) emphasizing and strengthening the most important social context of the individual: families with a handicapped child are seen now as units to be cherished and supported rather than units which have to be broken up by a recommendation for early residential care.


At the same time -that- government is increasingly involved in direct provision and operation of services, mental retardation is increasingly seen in conjunction with other disabilities, such as the so-called developmental disabilities (Cerebral Palsy, Epilepsy, and other disorders), and, more broadly, all social services are increasingly seen as part of a whole which is categorized by individual need rather than administrative label: i.e., the generic approach to planning and provision.


If the associations are to continue to be as effective in the future in achieving their first aim -- the fulfillment of the individual handicapped person -- as they have been in the past, they clearly have to take account of these trends. This in turn will mean finding new and exciting roles, new answers to some of the organizational questions which the current heart-searching is all about.


The changing trends in the field of mental retardation which are producing net challenges for Associations for the Mentally Retarded can be identified as follows:


1. From service provision to demonstrating new ideas


This does not mean that the associations will stop providing services. Far from it. It means, though, that instead of providing basic services they will be constantly looking to ways to fill gaps and add dimensions to the lives of handicapped people. It is hard to see a time when this vital role will be over in a society which is constantly changing at a rate with which statutory provision simply cannot keep up.


2. From service provision to demonstrating new ideas


This does not mean that the associations will manage the services provided by the state. Management and advisory committees cannot act as monitors; they can only act as managers and advisors, BUT we are living at a time when the need for truly independent monitors is well acknowledged. They are not tied by management considerations or the need to reconcile conflicting professional views; they can go STRAIGHT for the good of the individual person. This is a tremendously exciting new opportunity for voluntary associations in the field of mental retardation.


3. From a narrow concern for mentally retarded people to a wider concern with all handicapped people


This does not mean that the interests of mentally retarded people will be swamped. Far from it. It means that the "lobbying" strength of the associations concerned with them will be able to unite with other groups and so grow, while at the same time protecting the special interests of retarded people. By extension, the associations will be able, through their own special interest, to spearhead some critical looks at the way our societies are going and what they offer to their weaker citizens. A good example here is the associations' proper concern with prevention of mental retardation. We know that the most important field of prevention lies in tackling the inner city problems of poverty and deprivation; work here by the associations is bound to have long lasting and far reaching effects on the health of society as a whole.


4. From an organization primarily for parents to an organization for and with mentally handicapped people themselves


Handicapped people have, in the past, been largely left out of the decisions which can affect their lives quite vitally. The associations, in their recognition of the need to give handicapped people a voice, are already starting to lead the way in the sort of "consumer involvement" which will be the basis for the better services of the future. At the same time, it is the associations, through their special interest and expertise, who can do like none else the vital job of introducing the handicapped person to his "normal" peers and so ensure that his integration into society is a real one and not just a paper one.


5. From an organization which does what others can do to an organization which provides what no one else can


This does not mean that the traditional involvement and hard work of parents which has developed the associations until now will be forgotten in future. Quite the contrary. Parents, members, freed from the heavy responsibilities for providing services, will be able to concentrate on the one area which no professional, no other person, can do as well: the counseling of parents who have just met their own retarded child. The "pilot parent" projects are the beginning of a new strength for parent members.


In summary, the associations find themselves now at a tremendously exciting time of change. They will have an increasing freedom from the many heavy responsibilities of the past which will enable them to launch new creative efforts for the decades to come. They will be relieved from the responsibilities of things which other people can do to turn to things which they can do better than anyone else.


I hope that this brief excerpt from the Canadian report has given you an appreciation of the important continuing role that awaits the active and progressive associations of parents and friends of mentally handicapped citizens. Let me now call your attention to another development, a closer working together but also from time to time a closer confrontation between these national associations and national governments.


Denmark was the first country to prescribe, by statute, representation from the Association of Parents of the Mentally Retarded, both on the national and the regional mental retardation boards. For many years this 1959 Danish legislation remained unique, but in more recent years some other countries have introduced similar arrangements. Switzerland has established a standing commission on retardation, an advisory body, after long effort by the Swiss Federation of Parents of the Mentally Handicapped, and its president serves as chairman. Persistent work by the Norwegian association resulted last year in a national regulation establishing in each county a three-member "watch-dog" committee to monitor adequacy of retardation services. A representative of the county's parent association serves on the committee.


In some other countries, such as Belgium, Sweden, Spain, and Australia, there are government appointed national commissions dealing with all handicaps on which the associations for the mentally retarded are represented. It is noteworthy that in Spain this commission works within the Department of Labor, Spain having been one of the first countries to recognize that sheltered workshops and vocational training centers must of necessity be considered in the context of labor policy.


In France, UNAPEI, the national parents' association, issues a comprehensive monthly bulletin which reports on and reviews in great detail proposed new legislation, regulations, and governmental activities in the field of retardation and related disabilities.


Switzerland was the first country to develop a national policy for subsidies to local associations for the mentally handicapped, on the condition that they were providing information and counseling services to parents. The significant point is that it was the Swiss governmental disability insurance system which provided this financial subsidy because they had convinced themselves that these kinds of services, rendered by local parent association, were of distinct value as measures in secondary prevention of disability.


It has been a characteristic of any of the older and larger parent associations to develop an interest in international exchange and to become part of the international network of helping organizations. A look at this network seems appropriate at this point.


A resolution passed in 1950 by the United Nations General Assembly, which led to the establishment of the rehabilitation program within the United Nations, requested the Secretary General to plan this activity jointly with the UN Specialized Agencies and in consultation with the interested non-governmental organizations. A meeting of such organizations was called and resulted in 1953 in the formation of the Council of World Organizations Interested in the Handicapped, also known as CWOIH. CWOIH now comprises almost 40 international voluntary organizations, from the International Committee of the Red Cross to the World Federation of the Deaf and the World Council for the Blind, from the International Catholic Child Bureau to the Salvation Army. A major force from the beginning was the International Society for Rehabilitation of the Disabled, now also called Rehabilitation International. Its Secretary General, Mr. Norman Acton, is at present the chairman of CWOIH, and the International League of Societies for the Mentally Handicapped is represented on its Executive. One of the most recent members is the International Cerebral Palsy Association, which has its headquarters in London.


A major function of the Council of World Organizations Interested in the Handicapped is to assist the non-governmental organizations in its membership in effectively relating to and whenever possible utilizing the services of the United Nations and its Specialized Agencies -- in particular, UNESCO, the World Health Organization, the International Labor Organization, the United Nations Children's Fund, and, particularly with reference to the "developing" countries, the FAO -- the Food and Agriculture Organization. Within the United Nations itself the Social Development Division is playing an important role, particularly through the work of its Unit on Rehabilitation of the Disabled; it is that Unit which is authorized to call together each year the UN Ad-Hoc Committee on Rehabilitation of the Disabled. During recent years mental handicap has received increasing attention from this group, which maintains a continuing relationship with CWOIH.


As we meet in our travels with agencies and their professional staffs, but also with colleagues from the academic field, my husband and I note with great regret how few people know of the excellent materials, documents, and significant policy declarations which emanate from these UN Agencies, and how little use is made of them, even where known. The highly developed industrialized countries are no exception.


In addition, there are of course important international regional organizations, such as the Council of Europe and the Organization of American States, whose resources are also underutilized.


In the area of international cooperation there is a further resource which is very much underused, and that pertains to internationally sponsored exchange of students and practitioners, and to visits by consultants (many of them UN sponsored), or to study trips such as those based on grants like the Churchill Travel fellowships. All too often the results of these studies are not shared with a larger group, and excellent reports are limited to casual private circulation. As so often, the problem lies in the expense of organizing such materials for wider distribution, but merely the availability of such information as to who has been where would be most helpful, judging from the many requests for information which reach us personally.


One area in which the International League of Societies for the Mentally Handicapped has been particularly active in recent years, and which was the subject of one of its recent conferences in Brazil, is manpower and manpower training.


The concept of mental retardation, in its social, biological, and psychological dimensions, has undergone, during the past quarter century, most sweeping changes. Previous notions of the mentally retarded as a socially dangerous group, notions of the fixed I.Q. as a roadblock to substantial improvement, of the social incapacity of mentally retarded persons and of the ineducability of a large number of them, stood in the way of an aggressive program of training, treatment, and rehabilitation. With mental retardation thus conceived, there was little need for well trained, effective staff.


Today a totally different situation prevails. There is great emphasis on the educability of mentally retarded persons, on their capacity for growth and development, for learning and for continued application of what has been learned, their reaching out, and, in a growing number of cases, on their successful adjustment in the community; all this has both resulted in and is the result of a more dynamic approach to the problem of mental retardation.


To make international comparisons in an area of human services is always fraught with danger because so many underlying differences in culture and social technology need to be considered. However, one general observation pertains to the seeming variety and even contradictory nature of manpower development in the field of mental retardation during those 25 years. On the one hand, there is a definite trend towards acquisition of higher level training, a requirement for more specific academic qualification. On the other hand, there has been an interesting emphasis on using workers who have not had extensive training or academic qualifications but whose main strength lies in their ability to come close to the retarded person under care, and whose capacity lies not so much in an intellectual understanding of the many facets of mental retardation but in an intuitive ability to relate to, communicate with, and motivate retarded individuals. On closer scrutiny, these two trends do not turn out to be in conflict with each other but rather refer to quite different, separate functions which complement each other.


A third dimension refers to two additional sources of manpower. The one are the volunteers, often young or elderly persons, interested in helping their fellowmen. The other additional manpower source, at first accepted with great misgivings, are parents of retarded children. In an increasing number of countries they have been given an opportunity to participate actively in a large variety of programs; thus they have become members of what once was described restrictively as the professional team.


Among the established professional groups, education is undoubtedly taking the leadership in developing manpower for the field of mental retardation. In many countries this training originally was quite separate and apart, and usually privately arranged, such as that of teachers for more severely retarded children who were excluded from public schools and banished to so-called training centers, day care centers, and so forth. However, not only are classes for these children now part of an overall mental retardation program in an ever increasing number of countries, but more and more there is being developed a basic curriculum for teachers of all handicapped children, with specialization in the later stages of training. This relates also to the recognition that no child is "ineducable," and that every child should be considered from an individual developmental viewpoint.


In the process there has been a change in the perception of the role of teachers. In the past they often were limited to classroom duties; other so-called "clinical" persons were charged with studying the children and arriving at a diagnosis and plan of treatment. The acceptance of teachers as members of the clinical team has been very slow, yet when it came to the implementation of the recommendation of the clinical team, the teacher became the main actor. Together with a greater appreciation of their contribution has come in many countries an improvement of their salary and in the general status of the teachers of special education. This again has resulted in (or has in part resulted from) an increasing international communication between teachers of mentally retarded children, and, more broadly, special education teachers in general. There now exists the European Association for Special Education, and it is not hard to predict that in the near future we shall see a world-wide organization. There is reason to hope that such an international group will become affiliated with the World Confederation of Organizations of the Teaching Professions, which last year for the first time held a seminar on handicapped children and youth.


Education is one of the fields where personnel not meeting the traditional standards of professional preparation are playing a significant but as yet inadequately explored role. They are teacher aides, whose original function was limited to relieving the teacher of the time-consuming and, to many of them, unpleasant and "unprofessional" task encountered when incontinent or untidy children are admitted to a class group. In various countries we observed instances where the activities of these aides had progressed from a mere job of cleaning up and taking children to the toilet to a sharing of the educational task. They were able, for instance, under proper direction, to keep a group of children suitably occupied so that the teacher could work more intensively with an individual child requiring special attention. In other words, there was a reversal of the pattern which had been anticipated. On the other hand, we also observed instances where the aide would give individual attention and emotional support to a child who was particularly disturbed, perhaps even removing him from the classroom for a quieting walk. The main point I wish to make is that, in this as in other situations, workers with relatively limited formal training, working in conjunction with and supervised by a qualified teacher, can add substantially to the quality of the learning experience in the classroom.


In a few cases we observed how through a close cooperative relationship between the special class teacher and the teacher of a regular class of older children, a small group of these non-handicapped children, at their own request, guided play activities of individual handicapped children -- always, of course, under proper direction. Language stimulation or some specific sensory motor activity was at times included.


In the nursery schools, of course, mothers of the children frequently participate in the educational process, as has long been a requirement in cooperative nursery schools and playgroups.


Altogether, parent participation in programs for mentally handicapped children is seen with increasing frequency, and this has added a new, enriching dimension to the manpower picture in the field of mental handicap. In several countries, selected parents have been trained to perform a function variously described as parent resource person, pilot parent, or visiting parent. Their task is to contact families where the problem of mental handicap has recently arisen and to provide emotional support, as well as specific information designed to encourage parents to utilize existing clinical, counseling, and auxiliary services, and to encourage parents to focus on meeting the needs of the child. At times such programs are managed independently by parent associations, but we have been in communities where physicians have accepted this arrangement as a valuable service which they can and do recommend. Parents also play in some parent education group programs the role of group leader. In France the parent-to-parent support program is well developed throughout the country under the name "Action Familiale" -- or inter-family action, the translation used in a symposium on the subject held under the auspices of the International League of Societies for the Mentally Handicapped in 1972.


In Britain the National Society for Mentally Handicapped Children is promoting, through its regional organization, parent-to-parent support programs, and mention must also be made of the parent education demonstration programs undertaken by the Hester Adrian Research Centre at the University of Manchester.


It has not been possible for us to get an adequate picture of the many changes which are presently under consideration and in various stages of formulation in Britain, as far as manpower training of basic personnel working with mentally handicapped individuals in the area of health and social services is concerned. We do know that the results will be carefully evaluated in other countries where similar needs are felt but no such large scale efforts have been mounted. We would like to make one particular comment here that invites, we hope, controversy. It seems to us that some of the traditional training programs for institutional personnel, which originated during a period when there was little appreciation of developmental concepts and when maintenance of orderly routines of care was emphasized, result in staff attitudes -- even among younger, newly trained workers -- which reject a more dynamic, individualized approach.


Finally, there are definite indications that in the future we will see a new role for the handicapped individuals themselves. Sweden, already in 1973, issued a directive prescribing that every mental retardation service meet periodically with the clients, the retarded people themselves, to provide opportunity for them to participate in decision making insofar as this is feasible. In the words of the directive, the purpose is to stimulate individuals to participate actively in the shaping of their own situation and circumstances.


Even to some seasoned workers, expecting judgments of this nature from retarded individuals appears quite unrealistic. Yet elsewhere we have reported on the Mohawks, a social club of mentally retarded young men in Boston, Massachusetts, in existence for some ten years. More recently this group of young retarded people has successfully offered their services, for a modest fee, to provide consultation to organizations planning projects such as a sheltered workshop, hostel, or community residence.


Client participation is known in the field of rehabilitation as co-management. Enabling mentally retarded persons to have a voice in decisions affecting their daily living may seem to have little relevance to a discussion of the manpower situation. Yet when such participation leads to lessened dependence on staff and, at least for some, results in the ability to live in unsupervised apartments (as is already the case in some countries), the relevance should become clear.