Library Collections: Document: Full Text

University of California Extension, Berkeley, California, 1979

I think it is fair to say that the two mainsprings in the introduction of the developmental disabilities legislation in our country were, on the one hand, the recognition that combining the interests of several disability groups might provide greater political clout, and, on the other hand, the recognition that groups originally selected under this designation had the following in common: the particular needs related to management of disability in the early years of child development, and the dearth of services available to meet these needs. Early intervention, not just limited to early diagnosis but effective help to the home to assist the family in meeting the needs of the infant and very young child with severe handicap, has been almost universally neglected, as my husband and I have found in consultation visits to some 35 countries.

The reasons for this neglect doubtless vary from country to country. There is, for instance, the cultural tradition that very young children should be the responsibility of their mother, and there is the bureaucratic problem of delivering services to the home. Another factor may well have been that the parents, who in the 1950s and 1960s themselves organized cooperative services for their handicapped children and through their Associations demanded help from the State, mostly had children of school age or older.

To be sure, in some countries counseling was offered to parents to help them deal with their "psychological problems," but what disturbs parents in the first place is the frustration of not knowing how to help their child effectively, and about such practical matters the counselors had little to say. Increasingly, countries developed clinics which provided diagnostic services, but these too rarely offered the kind of practical advice which could be utilized by parents at home.

While there are some notable exceptions, on the whole it can be said for all the countries that when these severely handicapped children are admitted to an educational program (and there are marked differences in the age of admission), their level of functioning -- and their resulting disablement -- is distinctly below what could have been possible in view of the original impairment. This may refer to speech and other means of communication, nourishment and eating habits, toileting, and the whole range of sensory-motor activities and social adaptations which are of such crucial significance in the development of a severely handicapped child. In addition, there are specific health problems such as the correction of orthopedic, visual, and hearing defects which often remain unattended to the detriment of the child's developmental potential. Last, but by no means least, should be mentioned a frequently encountered unduly low level of physical activity. Traditional overprotectiveness keeps parents (and others) from encouraging the child to engage in active physical exercises (walking, running, jumping, ball playing), and this is reinforced by a low level of expectancy in this regard, which most likely was conveyed to parents in their contacts with professional workers.

In short, granted that there are notable exceptions, it can be said that in most cases, developmentally disabled infants and very young children and their families face an unavailability of the most essential services and a disregard of the most self-evident needs in the most natural setting, the family home.

A British pediatrician, Frederic Brimblecombe, well known for his imaginative approach to early intervention with handicapped children, has described his recognition of this service void and his response to it as follows:

In Exeter, we made a survey of the unmet needs of handicapped children and their families. Our study was controlled (in the scientific sense) in that for each family with a handicapped child we interviewed a similar family without a handicapped child. In all, from a birth population of 6,000 children we found 310 children who had had a significant handicap identified before their 5th birthday (and 310 families without handicapped children who had a child of the same age, of the same family size and the same socioeconomic class). The "control" families had in many respects as many unmet needs as the handicapped families. When these had been equated we identified three particular unmet needs of the group who had handicapped children. These can be summarized.

1. A need for more information about the nature of the child's handicap.

2. A wish by the family to be helped to become more self-reliant in dealing with the child's handicap; in other words a failure by the professionals to transfer to the parents the special skills, confidence and courage needed to help their child achieve this full potential.

3. A need for more family support. The families with a handicapped child felt themselves to be isolated, the brothers and sisters deprived of many social facilities, a high risk of marriage breakdown among the parents, and above all a gradual erosion of their courage and strength so that at last exhausted and bitterly humiliated by their failure to cope, a number of families had sought institutional care for their handicapped child. (Brimblecombe, 1978)