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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.