Gijs VanGemert, Ph.D.
A humiliating conclusion of a national survey in the Netherlands is that at least 2000 moderately and severely mentally retarded persons living in an institution find themselves in extremely restricted situations because of their problematic behavior. In these cases, quite often drastic measures are taken to protect the resident and his physical and social environment against damages. In the long run, these measures will have detrimental effects on the quality of the resident's life, often creating an inhumane situation.
There is a paradox, however. In general, these residents have not been neglected. In most cases the institute has invested a lot of money and staff to improve or maintain the conditions in which they live. In the residents' files one can find descriptions of many interventions throughout the years. Currently, there will exist a kind of general embarrassment and pessimism about the future of these residents. Ideas about meaningful goals with respect to the resident are scarce and very vaguely formulated. Systematical therapy is nearly always missing. Service is directed at management and control of undesirable behavior. At the same time, the number of social and physical stimuli is reduced, resulting in a scantily furnished environment. Every assault by the resident at this system will be answered by a tightening of control and further deprivation of the situation. After some time, there will exist a fine-meshed network of dos and donts functioning as rules for the staff, giving them, like the resident, very little room for individual choice and variation. Earlier research showed that the perspective of such an arrangement is poor (Van Gemert, 1985). Deprivation and structuring together may well create inhumane living conditions for the residents.
In some cases it is useful to place an individual temporarily in a specific setting as a means for training or therapy. But very often, the resident is quite competent with respect to desirable behavior. One does not have to train him, one should organize circumstances in such a way that the desirable behavior increases. Bringing the therapy to the life system does not present a solution either. Token systems and other environment-shaping techniques, with their rigid infrastructure, do not teach the resident self-efficacy. On the contrary, the resident may be made more dependent on other people than before, which will express itself as a lack of generalization and transfer of the learned skills. Furthermore, the rigidity of the situation demands a lot of energy from daily staff, up to the point of breakdown and loss of creativity. Even if there is an improvement in the resident's behavior, it will be very difficult to continue the approach in other settings because of the extra costs involved and the dependency of the resident created with this approach. The relapse rate after remission is high. All things considered, we should look for an alternative approach, with a more appealing perspective.
This paper is concerned with enhancing the quality of the resident's life. Our position will be that whatever the therapy, it is important to create a supportive environment in which the resident can live his own life. Daily interactions with other people are the core of this environment. We will describe the lines along which this environment can be created, as a necessary condition for successful therapy. We will use an analogy with the way children are educated by their parents, looking for a balance between therapy and daily interaction.
Education as a metaphor
Education is what happens between children and their parents or other educators. It may be defined as the living together of children and educators while the latter try to prepare the child, according to their own standards, for an independent life in a particular type of society (see Nakken a.o., 1992). Education can be studied from different points of view. In this paper the pedagogical view will be applied. The pedagogical tradition is interested in the way parents and children live and learn together. Education takes place by building and maintaining a relationship with the child. By way of this relationship, the educator tries to influence the child, but where possible this is done by implication, with as little emphasis as possible. In order to learn independence, the child must make his own decisions wherever possible and should be confronted with the consequences of his choice. The educator sets boundaries and regulations but the possibilities of the situation are stressed in interaction with the child, rather than the prevention of all errors. Too much regulation will prevent experience from failure. Of course, not all risks should be taken, but education without taking risks does not exist.
Within a good relationship daily interaction is characterized by mutual equivalence and responsibility. The child is respected as his own person, but the educator's behavior should be evaluated along the same lines. The educator is not all-accepting, he invites to cooperate. His role is to create conditions, set margins and enforce agreements. Sometimes power and directivity are needed, but only to reinstall the dialogue with the child as soon as possible. Last but not least, the educator should have a certain autonomy according to what he sees as the interests of the child.
This may sound like an idyllic picture of life. In fact, it is an ideal against which the daily interaction may be evaluated. It provides the criteria to assess the quality of the relationship. To actualize such a relationship requires a conscious effort of parents and other educators. Mutual responsibility does not originate spontaneously, certainly not when the child has not learned to trust other people, or is not used to making his own decisions. Trust must be built, systematically, by constantly inviting the child to take responsibility for his own behavior.
To a large extent, education offers an adequate analogy for an approach of mentally retarded people with behavioral problems. In both cases, the object is dependent from other people. Furthermore, only in an atmosphere of mutual trust can the mentally retarded person be expected to take his own responsibility. Given the many disappointments a resident of an institution experiences during his life, it might be very functional for him not to trust everybody at first sight. Professional caregivers will have to work long and hard for a good relationship.
The analogy breaks down to the extent that we are not speaking of normal education of children, but about people who have a long history of failures and broken trust behind them. Nevertheless, the pedagogical approach may be a good guideline, a counterpart of the idea that difficult residents need control in the first place. Indeed, the resident needs structure in his life. But what is the point of formal structures without the structure found in the relationship with other people?
Characteristics of a pedagogical approach
Problem behavior and especially aggression may not be an impulsive, uncontrollable act. It is the result of a process of communication in which both partners' attributions, norms and values play a crucial role. This is in accord with an attribution view on problem behavior (see Ferguson & Rule, 1983). Problem behavior is just one of the means by which people, mentally retarded or not, interact and play power games. Daily staff members must recognize mechanisms and behavior sequences leading to problem behavior. Only then will they be able to build an optimal relationship with the resident.
Using a pedagogical approach is something quite different from the naive idea of just living together. Indeed, things will have to be organized in a natural way, but a high degree of professionalism (a mixture of commitment and detachedness) is required. The optimal style of interaction is characterized by a continuing dialogue (in a broad, not solely verbal sense) with equal chances at turn-taking and initiative. More specifically, the approach can be characterized by some words beginning with an R: Respect, Room, Rationality and Realism. Their meaning is as follows:
-Respect: The resident is responsible for the things he does and does not do. There are rules to be followed, but the relationship is characterized by equivalence in terms of rights and duties.
-Room: The resident has the opportunity to develop his own initiatives. However, rooms without walls dont exist: boundaries and rules are a fact of life for both resident and staff. The latter need room too, to be able to invite the resident to cooperation with as little emphasis as possible.
-Rationality: Educators should have a keen eye for processes leading towards their own and the resident's excessive behavior. A lot of flexibility and creativity, based on rational decisions, is needed to adjust these processes in time. Professional workers especially should be aware of the danger of being washed over by the situation.
-Realism: The current situation is what counts. Professionals should refrain from actions based on former events, experiences in prior situations or opinions based on former functioning of the resident. Every situation offers new possibilities. Also, a kind of objectivism is needed: look what is happening, not what you think is happening.
These principles may be used as guidelines for the behavior of the daily staff and the resident. They are not easily implemented, but make very clear in which direction the approach should go. Looking for an optimal mix of R-words is typical of a pedagogical approach. Given the situation and the resident's needs, the educator/caregiver sees what he can and must do.
Figure 1: The central place of perspective and goals
The relationship with the resident is structured by an individual intervention plan. On the basis of this plan the daily program is formulated, containing enough tasks and challenges for the resident. An individual intervention plan is reached by a three-step-process (see figure 1):
(a) problem definition and analysis.
The first step in planning is the systematical reconstruction of the problem situation, resulting in an image of the resident based on consensus about the interpretation of the available information. More often than not, this image will deviate from the current image. This will affect the staffs basic ideas about the resident. It is important not to present solutions before phase (a) is really finished. A quick response to the demand for guidelines will endanger the creativity of the staff members, parents and other persons involved.
(b) perspective and goal setting.
This is in more than one sense the central part of planning. With the perspective, a normative aspect enters the discussion about the problematic situation. A long range desirable situation is stipulated, without paying too much attention to its achievability. Again, consensus about this global direction is necessary. Concreteness begins when goals and subgoals are specified, in line with the perspective. Their formulation should be concrete enough to use them as criteria against which future results can be tested. At the same time, the means by which data will be gathered about the results is determined. With luck, existing instruments can be used. More often, appropriate instruments must be developed.
(c) intervention and evaluation.
The intervention program takes the form of a hidden diary (a list of activities that minimally should be done each day or week). The diary is hidden for the resident because it lacks prearranged times and places. Planning should be restricted to this strategic level as much as possible. The tactics, i.e. the manner and the moment activities are implemented, must be left to the flexibility and creativity of caregivers and other people who meet the resident. The exception is where a training program or therapy is needed. Evaluation, i.e. systematic comparison of goals and subgoals with actual results, is an important aspect of intervention. It is the only way to avoid trivial changes based on momentary feelings, temporary disappointment or insufficiently based ideas. Only by systematic evaluation one may rightfully change goals, after a discussion of effectiveness and quality of the results of interventions.
This process is accompanied permanently by data gathering about the resident and the way the relationship is developing. Videotaped events and interactions are important means for reality testing and looking for possibilities during all phases of the planning progress. The effects of such a plan are not only a change in behavior of the resident, but also a change in behavior and attitude of the staff in the institute.
System level intervention
Behavior problems are difficult to settle because they are embedded in, and at least partly a result of, the culture in an institute. A culture can be defined as the whole of presuppositions and common meanings. Changing the staff's views implies a break with the existing culture. Developing an individual plan for a difficult resident is a good way to change the culture and its resulting infrastructure of the institution. Sometimes it is possible to move a tree by shaking the branches. Very often, however, intervention according to an individual plan is a necessary but not sufficient condition for improving the quality of a resident' s life. Intervention at the individual level must then be parallelled by intervention at system level. Given the robustness of culture with respect to change, it will often be necessary to set up a powerful project guided by (a multidisciplinary team of) external consultants.
Consultation is more than simply asking and giving advice. The consultant aims at the improvement of a client's resources. A consultant gives advice, models intervention and guides the changing process, without taking over the responsibility of the staff members. The consultant acts as a concerned outsider. He has a high level of knowledge and skills. His clients are not the residents, but the staff members. His contribution is more than an advice and less than a command. He supports and accepts his clients' decisions, but evaluates them on the basis of former choices and goals.
An important aspect of consultancy is that it is not permanent. Like an educator, the consultant tries to enhance the independence of his client. He works on the fundamental assumption that someone who asks for consultancy, is nevertheless competent in principle to create solutions for his own problems. He only needs temporary assistance, and the consultant should step back as soon as possible. When a consultant becomes part of the furniture, his strongest point, having an outsider's status and autonomy, is gone. He will have become part of the system.
Several consultations and interventions have taught us that a lot can be done concerning severe behavior problems with mentally retarded persons. Usually after a year or so, residents live in less restrictive environments. Parents report that their children have become human again. Staff members express much professional self-confidence at various, formerly threatening occasions. Their attitude concerning behavior problems and daily routines has changed fundamentally. Professional meetings have changed from problem oriented towards purposeful occasions to discuss planning.
Of course, these results are no conclusive evidence that the approach will work under all circumstances. Neither can we be sure which mechanisms, alone or in combination, are responsible for the changes. But at least it shows that something can be done to break through an impasse around a resident with severe behavior problems. Anyhow, given the state of the art of consultancy, it would be too early to perform a rigorous test. Development of the approach by way of diversification of problem situations, specification of conditions and stipulation of possible outcomes is more in order. At this moment, we are generalizing the approach by installing teams of consultants on request of parents and institutes, requiring them to follow a protocol using consultancy along the lines of an educational approach. At the same time, a research project funded by the national government is on its way to develop a systematical way of planning and evaluation.
Using a pedagogical approach requires a lot of energy and time from many people. In a sense, it is simpler to arrange therapy. Then existing structures and cultures are not affected, and there is no need to confront culture bearers with the long time results of their actions. But when therapy fails, or the resident is not able to live an acceptable life afterwards, it will be very difficult to offer the resident an acceptable quality of life. There are two tasks to perform concerning mentally retarded persons with behavior problems. One is to correct their behavior. This is the simple task. The other is to integrate the mentally retarded person in a least restrictive environment. We have only begun to discover the difficulty of this task.
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For further information contact:
Gijs VanGemert, Ph.D.
Department of Special Education
University of Groningen
Grote Rozenstraat 38
9712 TJ Groningen, Netherlands