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Continuity

Continuity of personal functioning is important in achieving normalization. This requires a continuity of available services, and continuity between those aspects of a person's life which are supported by special services and those which are not.

The concept of a continuum of available care goes back to one of the recommendations of the President's Panel on Mental Retardation, but the word "available" has been added to underline that while an inclusive array of services must be in existence, the retarded individual would not necessarily be in care on a continuous basis, and would not be moved automatically from one service to the next. There may be periods when his family or, later on, he himself can manage without aid -- yet as soon as the need arises he should be able to move back into a service system that will aim at "minimizing his disability at every point in his life span" (President's Panel, 1963). Services may well be given under a variety of governmental and nongovernmental auspices -- the term "system" should connote a coordinative cohesion which bridges administrative or functional fragmentation.

In regard to residential services, continuity implies an uninterrupted interplay between the family and the residential facility where the mentally retarded person is being served. Just as entrance to a residential facility should be gained easily and informally, so ongoing contacts -- correspondence, telephone calls or inquiries, visits by the family and visits to the family home or relatives' homes -- should be easily accommodated. A very important aspect of this continuity refers to the closest possible involvement of the appropriate family member(s) as far as crucial decisions in the service process are concerned.

Concluding Considerations

It is obvious that integration, dispersal, specialization, and continuity are inseparable. Dispersal permits the development of small living units in neighborhoods in which integration becomes possible. Continuity, especially between home and residence, further facilitates integration because it supports those ties that most citizens have to their families.

The far-reaching implications of the normalization principle -- simple as it is -- should now be apparent. Unfortunately, the simplicity of a term or concept is not necessarily an asset, when one considers the desirability of making it the springboard for large-scale social action. There is a danger that people will brush aside a concept they consider simplistic and self-understood, without bothering to explore its concrete implications. It is therefore particularly fortunate that in 1966, David J. Vail, a well-known psychiatrist and administrator of the mental health and mental retardation facilities in the State of Minnesota, published a book entitled Dehumanization and the Institutional Career. In this brilliant work, Vail provides a detailed documentation of the many ways in which our institutions serving the mentally ill or the mentally retarded go about stripping from the residents their human dignity, their identity, their motivations, their privacy, their basic human rights. In short, not only does Vail's book provide the most cogent reason for adoption of the general concept of normalization, but item by item it would be possible to put into juxtaposition for every example of dehumanization given by Vail a corresponding situation characteristic of the process of normalization.

Several of the contributions to this volume make it very clear that the principle of normalization applies to the parents as much as to the mentally retarded himself, and indeed to the role of the family as the generally accepted social setting for interaction between parents and their children. Since Cooke's free choice principle essentially aims at assuring for parents of mentally retarded children the kind of access to a multiplicity of services which usually is (or ought to be) available to individuals in our society who are faced with a problem, it appears to have a straight logical relationship to the process of normalization. This is underlined by the fact that even though Sweden is almost wholly committed to public services, Nirje in his chapter specifically speaks of the desirability that parents have available to them choices in making decisions on behalf of their retarded child.

But what is the relationship of Wolfensberger's cost-benefit scheme to the normalization and free choice principles? At first glance one may be tempted to see a basic contradiction between free choice and the bureaucratic decision-making apparatus through which Wolfensberger's principle would have to be carried out. What needs to be emphasized is that his proposal is predicated on a human management approach, an approach which is based on human factors such as the psychological needs of the child and the parents, and the best way to meet them. To imply that his proposal would allow a bureaucratic organization to force the parent to select whatever course of action is cheapest is to pervert grossly his proposition. To the contrary, he rightly points out that in many cases today, parents are pushed or led into wrong decision-making simply because they had no access to information which would have spelled out for them the entire range of alternatives of care available to them in planning for their retarded child.