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Castle Priory College, Wallingford, England, 1975

Six weeks of intensive discussion in Britain with professional workers from the fields of education, health, and social service in local and state agencies, both public and private, as well as with individual parents of mentally handicapped children, make it fairly obvious that the decisive changes which had been expected as a consequence of the radical reordering of statutory and administrative provisions in the field of mental handicap have fallen far short of expectations. Many of our colleagues seem to feel that the process of change has slowed down to a point where it barely can hold its own against the ever present force the sociologists call "system maintenance," the inherent reaction of administrative bodies and their staffs to resist change which is threatening established work patterns, procedures, and privileges.

We are, of course, aware of the statement of the Secretary of State for Health and Social Security of February 26,1975, in which she acknowledged, in essence, her Department's disappointment with this state of affairs, and in which she announced the appointment of a National Development Group for the Mentally Handicapped which is to play an active role in the development of departmental policy and the strategy for its implementation. This is therefore a very propitious time to put forth suggestions which focus as sharply as possible on what could be seen as possible reasons for the failure of the programs outlined in earlier government documents. I would like to discuss with you what my husband and I consider to be one of the crucial elements in this failure, namely, the neglect of the needs of mentally handicapped infants and young children and their families.

As we have talked with colleagues in the various disciplines concerned with mental handicap in various localities over the past six weeks, we have of course become aware of the intensity of the argumentations for or against the continued use of the large institution, for or against community residences, for or against integration, for or against segregated schools, for or against creating work opportunities for mentally handicapped adults on the open labor market. Much of this argumentation seems to us to be fundamentally in error because it is based on judgments of the potential of mentally handicapped children and adults which have been derived from the very conditions of past neglect and ignorance we are seeking to overcome in the future.

Just two months ago at a workshop attended by professional people, a person who questioned present proposals for social integration of mentally handicapped adults because of the potentially embarrassing situations it might cause cited as an example a young woman with Down's Syndrome "throwing her arms enthusiastically around people." While this kind of behavior unfortunately can still be observed all too frequently, it has of course long been proven that this simply is the result of misguided upbringing. Educational procedures to prevent this kind of social conduct have long been established and proven themselves.

I hope that during the discussion period some of you will point to similar instances where some of our colleagues base the programming for the future on the results of the misjudgment and the mismanagement of the past, but time commands me to address myself to the key point of my presentation, the neglect of the needs of the mentally handicapped infant and young child.

Let me quote from the findings of a conference on early programming which are about to be published.

The provision of a suitable programme of care for the mentally handicapped child and his family warrants serious consideration. There are two aspects to this problem; first, the urgent and crucial matter of how best to break the news to the parents; secondly, how best to supply the emotional and practical support which families are likely to need in the years to come. The evidence suggests that on both counts we are failing markedly at present to provide the kind of service which families require. (Spain and Wigley, 1975)

Similarly, at last year's annual meeting of the Association of professions for the Mentally Handicapped, entitled "Better Services -- the Realities," Kenneth Holt, pediatrician-in-chief of the Wolfson Centre, stated that "so far as the early detection of developmental delay and retardation symptoms is concerned, none of the medical services available is really satisfactory." (Holt, 1974)

But, of course, the most eloquent testimony about this situation would come from parents, particularly those with severely multiply handicapped children who in all too many instances still today are left without good, common sense practical help: assistance that would aid them in managing their children and meeting their developmental needs in the very first few years of life, and that would, it has long been shown, very substantially improve the level of their children's functioning.

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We are dealing here with a very strange phenomenon. The dynamic change in the way in which mentally handicapped people are perceived in your country (and through you in many others) can be traced back very clearly to the pioneering work with mentally handicapped adults as demonstrated by Ann and Alan Clarke, Tizard, Gunzburg, and others.

Gradually, all too gradually, the recognition of the surprising level of performance of quite severely mentally handicapped adults led to a reassessment of educational procedures. At long last the myth of the ineducable child was laid to rest when it was discovered that the problem was not with the children "who could not learn" but rather with the teachers who did not know how to teach them. However, it looks as if progress in education is proceeding at a rather slower speed as compared with that in the vocational and work area, and we would suggest that the reason for that is at the very root of this developmental phenomenon; namely, that our developmental sequence of services was in reverse, that we are moving last where we should have started -- namely, with the mentally handicapped infant and very young children, their needs, their potentials, and the services which will respond to their needs and develop their potential.

In other words, the proposition which we are putting up for debate this morning is of deceptive simplicity and goes like this: families with severely mentally handicapped children, and particularly those with multiply handicapped children, are apt to encounter a broad range of problems which I shall specify later in my presentation. In the past we have failed to give parents effective aid with these problems, with the result that the situation over the years became more and more aggravated, and both parents and children needlessly suffered. Therefore we recommend a basic shift in policy, giving a high priority to a range of services which will aid the child and support the parent in the home.

It is a very simple and clear recipe. As I shall show, it does not involve the spending of large amounts of money, does not require construction of buildings, and can be implemented with knowledge and techniques available today. As a matter of fact, in bits and pieces, components of a program of early intervention have already been practiced in various parts of this country for a good number of years. Yet it is very clear that the writers of the White Paper, Better Services for the Mentally Handicapped (Department, 1972), and of subsequent government documents have failed to recognize this problem in its practical aspects as a key issue and have failed to set the stage for the implementation of programs of early intervention, notwithstanding some broad statements about needed support to the home.

By the way, I am aware that early intervention is a term objected to be some people as implying too much intrusion. It needs to be understood as being put into opposition to the attitude of laissez-faire, the benign neglect which has characterized the early years of the mentally handicapped infant within the home.

A great deal has been written in professional literature about the psychological problems of parents with severely mentally handicapped children. An example is this excerpt from the report of a very recent conference: "All parents with severely handicapped children suffer severe stress in acute form when the handicap is recognized, and in a more chronic form of depression and anxiety later. It is important that this is recognized and informal psychiatric screening should be done on all families with handicapped children." We are very weary of this glib general reference to the need for psychiatric help. It is of course entirely to be expected that parents faced with the birth of a severely handicapped child have a reaction of deep disappointment and grief. But as we know from numerous testimonies of parents, they also have a sense of great frustration because they do not understand what has happened and what the future will be. More positively stated, parents want to understand what is wrong with their child and what they can do to help him or her. When they are frustrated in this, and this frustration persists, they indeed will become disturbed.

The initial problem of course relates to the way in which parents are being told that they have a mentally handicapped child, because all too often the negative attitude of the informant sets off a negative chain reaction in the parent. This is exemplified in the phrase, "There is nothing that can be done."

Admittedly this important process of first informing the parents is hard to control, but what must give us great concern is that the much more formalized, elaborate process of assessment which occurs much later still continues to be handled frequently in a very unsatisfactory way, as far as the parent is concerned. Within the past month, Ann Jones, a psychologist, very forcefully pointed out in an article in New Psychiatry (April 24, 1975) that much of the value of assessment is lost because its real meaning is not conveyed to the parents in a comprehensible form. As a result, instead of gaining an understanding of what is wrong with their children and what kind of help they need, the parents get irritated, frustrated, and disturbed. Ann Jones makes a very simple, practical suggestion -- that the parents get a detailed, comprehensible, written report of the assessment.

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This very sensible suggestion is by no means obviated by another recommendation that has been made by many parent associations in various countries, but recently has been echoed by a few professional persons and indeed in a very few places been put into practice -- that the parents be given an opportunity to participate in the assessment process and in particular in the assessment conference, unless some unusual circumstances speak against that.

Furthermore, because experience has brought out very clearly that an initial assessment cannot possibly predict with accuracy the child's development, periodic reassessment with participation from the parents, but perhaps with a more limited professional staffing, is of the essence. What needs to be stressed is that in distinction to the term "diagnosis," the term "assessment" should be understood to include a statement of the child's needs and ways of meeting them, and each time, we agree with Ann Jones, the parents should get a written summary.

The process of assessment is usefully supplemented by parent education of the type so successfully demonstrated by the staff of the Hester Adrian Centre at the University of Manchester. Parents of a severely handicapped child come face to face with new words like mental handicap and mental subnormality, new facilities like day center or special care center, new procedures like speech stimulation or motor development; experience has shown they can learn best about these things if they are being discussed in a group, although we must of course make allowance for the occasional parent for whom participation in a group is either undesirable or inappropriate. Much is gained when parents have a better understanding not just of their handicapped child's special needs, but to what extent that child is more like than unlike other children.

Parent education in groups is usually organized for a limited number of meetings. It is, as the name says, an educational process, and needs to be clearly differentiated from parent counseling, which may take place either individually or also in groups. Parent education conveys broad information; parent counseling deals with specific problem situations the parent is encountering with the management of the child, in the relationship with neighbors, in the use of community facilities.

The essence of early intervention, of course, lies in making available to parents not only advice and counsel but detailed technical instruction or perhaps specific equipment that will help them in taking care of their children and furthering their growth and development. From our own experience with many parents, we know, for instance, that feeding such a child may pose great problems, taking hours of the mother's time and causing her great anxiety. Yet there are simple ways of helping the mother to teach her child to suck, to swallow, to use a spoon, and they can easily be demonstrated. I had hoped to show you as one example a brief teaching film on such a subject, but technical problems made this not possible.

Many mothers urgently need not only to understand the nutritional requirements of their child but ways to meet them, need to understand not only the sequence from soft to solid food but how to achieve this, need to understand the significance of proper food and proper chewing, not just for dentition but for the beginnings of language development. Parents struggle needlessly with feeding problems when a special spoon, a special cup, or some other procedure may speed up the training, not only saving the parent time but helping child and parent to move on to the next developmental stage. Add to this effective help with sleep problems and toilet training, and the improvement in the domestic scene and the child's greater readiness for a first group experience will be advanced beyond measure.

That the first three years of life are the most significant development learning period in a child's life is common knowledge, yet traditionally we have thought of education as a business of schools. But education does of course begin at home, and the role of the parent as a teacher in child development is of particular significance with the handicapped child. For instance, a baby with Down's syndrome needs a maximum of stimulation, through early sensory training and in motor development. Short teaching films are available to show a mother how to help her baby with Down's syndrome to learn to raise his or her head, or to roll over. There is the matter of speech stimulation and development, and the all important need for parents to understand that the severely mentally handicapped child will need help in developing a concept of self. Managing such a child may require home help, and Britain has not only pioneered in providing home helpers but now also is providing an attendance allowance in consideration of the extra expenses which accrue to families with this kind of problem.

Multiply handicapped children have need for medical intervention, and our contacts with parents indicate this still today presents an uneven picture, particularly in terms of orthopedic and other needed surgery, eye glasses, and hearing aids, where help is often not offered, and if requested, refused. There is little recognition by many physicians even today that many of these children need special attention for problems which are well within reach of remedial medical steps.

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For the latest documentation on this may I refer to the lead article in the British Medical Journal of April 12,1975. Let me read in full the section dealing with Down's syndrome:

"A mongol child aged 3 is seen. The diagnosis, already apparent from the child's appearance, should have been confirmed by chromosomal studies. If they have not been done they should be done now. Then the child and parents should be referred to a genetic clinic for counselling. If it is a heritable form of Down's syndrome, the parents, especially if they have other children, should know the probable risks for grandchildren.

"There is no specific treatment for mongolism, but it is important that (a) the child gets the full value of available education, and (b) the parents get some relief from the burden of looking after the child. As regards the child, preschool education would be an advantage, starting with play group and then going to nursery school if available. The parents may be advised to persist in training the child in feeding, dressing, and use of toilet. The tendency is to be over protective, but the majority of mongols, given extended training, can learn these skills. In fact, given sufficient education, many children with Down's syndrome can learn to read and write.

"The parents may need a holiday from the child. The present options are (1) residential centres provided by the social work department, (2) hospital (most hospitals take a large number of children and adults for an annual holiday), and (3) a holiday home run by a voluntary society (for example, the Society for Mentally Handicapped Children). Parents should be advised to join the local branch of the National Society for Mentally Handicapped Children. In many areas they run swimming clubs and hold children's play sessions. Dental care may be a problem. The alternatives have been discussed earlier in this paper.

"Parents always want to plan for the distant future. In fact little need be done until the child is nearing the end of school life. Then the family doctor should either contact the social work department so that the family get support there or ask a consultant from the local mental handicap hospital to see the child and the parents with a view to advising on postschool management and to give an undertaking about later residential placement if this proves necessary."

You may feel that there is much good information in these paragraphs. That is correct, but it does not tell the general practitioner much that is helpful about the specific ways in which the physician can aid the physical development of a child with Down's syndrome. For that the parent still has to go to Mr. Brinkworth, a child psychologist, whose booklet Improving Your Baby with Down's Syndrome has been a landmark in the efforts to bring to parents helpful information for the earliest years.

I do want to acknowledge that at the APMH meeting in Nottingham last month a physiotherapist specifically commented on work with very young children. She said that "the earlier a handicap is noticed and treated the better. When a child is multiply handicapped this is obvious, but it has also been found that Down's babies improve with early physiotherapy and it is common for mentally handicapped children to have retarded motor development." The problem is that it takes a physician's initiative to mobilize the skilled help of the physiotherapist, and too many physicians do not see the need for this intervention.

There is no time for me to deal with the importance of telling the mother about the significance of play and the help that toy libraries and consultation centres can provide in this regard, or the importance of social contacts and of preparing a child gradually for being away from the familiar home environment and away from mother, significant learning preparation for joining a pre-school program.

I realize as I said at the beginning that most of these services are known to most of you. The question is, under what circumstances, if at all, are they available in your community? In other words, the problem of early intervention is largely a problem of service delivery.

One further comment: there is always much emphasis on prevention of mental retardation, but aside from broad scale measures such as improved maternal and child care, our capacity for primary prevention of severe subnormality is still very limited. Early intervention, on the other hand, can be a powerful tool in secondary prevention, in eliminating needless complications as a consequence of added disability.

One crucial element in the service delivery in this area of early intervention for mentally handicapped children is the problem of staffing. Who is to do the job? My husband and I have tried very hard over the past six weeks to gain an understanding of what the various reorganizational moves in state and local services have to suggest in this respect. I hope you don't mind our saying that we found no answer for this because none of the planners seems to have given the problem sufficient thought to provide an answer.

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There is a need here to point to what impresses us as a basic weakness in your reorganization. We hasten to add that we invariably experience the same in our country with this type of reorganization. It is organized from the top down, instead of from the bottom up. It is structured to facilitate and safeguard the work of the bureaucrat rather than to give prime consideration to the citizen in need. Beautiful organization charts have been prepared that show the Secretary of State and the Department and the Region and the Area and the District, with a maze of interconnecting lines of responsibility and communication. But nowhere to be found are John and Mary Smith and their severely handicapped son, Billy.

My husband and I have visited, as consultants in mental retardation, some 35 countries, and of necessity we had to develop some approaches, some techniques, to assess the effectiveness of national systems of care. We, of course, studied the kind of organization chart I just described, which always would be handed to us, but then we tried to design a reverse chart, starting with the front line person, be she a health visitor, a recreation worker, the teacher in a day care centre, or a caseworker on a large ward in a large institution. From whom do they get guidance? Who monitors their work? And, a very important question for people we lock away in institutions, who is there to provide staff guidance and supervision and to monitor the programs over the long dreary weekend? The picture one gets in that way does look quite different from the organization chart.

The other technique we always utilize is to bring down the discussion to a specific case. For this we have a formula that can be used anyplace: It is, as the sociologists like to say, a culture-free test. We simply ask, "Suppose a child is born in your town or village tomorrow and is found to be severely handicapped, an infant with Down's syndrome, perhaps; or suppose the mother decides that she will no longer be put off by her physician who says her two-year old child will outgrow its obvious retardation, and she is looking for help: what does your town, your village have to offer to such a mother and to her child?"

Our third and often most vital approach is to turn to the consumer, to go to the parent. We are indebted to individual parents and the local societies of parents of mentally handicapped children and adults for so much of what we have learned in the last 15 years about the realities of mental handicap.

It is on this basis that we have been trying, during our present stay in England, to get a realistic picture of how the services connect with the parent client, or how the parents can connect themselves to the services. We are, of course, well aware that there are many excellent services in this country, services which have really set the tone for other countries, but this is not the question here. It is little comfort to the mother with a Down's syndrome infant in East Rutherford that 80 miles away in West Springfield there is a splendid assessment centre which connects effectively with the various services.

Let us be fair. We understand there is a fixed beginning service for this mother, and that is the visit from the District Nurse which the mother of the new born handicapped infant would get at home if she leaves the hospital within 10 days after delivery. The District Nurse presumably would alert the Health Visitor, and indeed many of the services needed, some of which I have outlined earlier, could well be provided by a Health Visitor, such as assistance in feeding the child. Less clear is from which source the Health Visitor would get consultation with a more complicated problem a mother encounters in feeding her child, one that calls for consultation with a nutritionist. And what about some of the other areas where the family of the handicapped child needs help, problems that relate not so much to physical factors as to his or her general growth in terms of speech development, sensory and motor training, and early cognitive responses? This does not seem to be an area in which Health Visitors are trained, nor is it something that has been covered by the conventional training of the social worker in the local social service department. And how about educators? They seem to be tied to the classroom or in any case (because there are domiciliary teachers) to the school curriculum, which does not include this type of consideration.

It seems then that the relatively simple array of services which constitute a program of early intervention are not at the moment in the competence of the front line workers in the local departments of health, education, or social service. This then is a problem that urgently calls for remedial action. However, we do not believe that it calls so much for a new "caring profession," as has been suggested, but rather for a reorientation in the training of health visitors and social workers. At the moment, educators seem rather far removed from this area, but we strongly agree with Barbara Tizard's recent statement in the Times Educational Supplement, in which she made an eloquent case for the need for nursery school education (Tizard, 1975). Once we get properly trained staff for this type of activity into the local education departments, we will have the kind of staff that will be able to assist parents.

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And this brings me to the final challenge I want to point out to you, and as so often in the human services field it is a problem of communication. Let me bring it to you in the words of a Health Visitor:

The health visitor must be ready to spend time and imagination so the parents of the handicapped know what services are available, where they are, and how to obtain them. She must be able to refer children to the appropriate agencies and be aware not only of the statutory provisions, but of the help that voluntary societies can offer. The needs of handicapped children are met by workers from various disciplines. There is a great need for each of us to repose confidence in the professional skills of others and therefore it should be possible to exchange all available information about the families we are trying to help with colleagues in other fields. Too often a wrong concept of "confidentiality" prevents health visitors receiving information about treatment advised by experts and given to the families of handicapped children. Surely this is unacceptable if the health is to give the support the mother needs, and if she is to help the family to carry out the advised procedure correctly. (Byrne, 1971)

It seems to me this is a good point from which to start our discussion.