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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.