BEGÅVNINGSHANDIKAPP OCH FRIHETSINSKRÄNKANDE ÅTGÄRDER
STUDY OF THE SERVICES FOR PEOPLE WITH CHALLENGING BEHAVIOUR IN 6 COUNTRIES:
THE SWEDISH CONTRIBUTION
Patricia Ericsson Kent Ericsson
Persons with challenging behaviour - no new
1. Persons with challenging behaviour - no new phenomena
As long as there have been special services for persons with intellectual handicap a group, or groups, have, because of their exceptional behavioural patterns, been identifiable and identified as a group apart. Ways of describing them have however varied considerably depending partly on the general attitudes of society towards persons with deviational behaviour and therewith very exceptional needs, partly on depending on current ideologies within the special services themselves.
Wolfensberger's work on the various roles ascribed to persons with intellectual handicap has even greater pertinence when related to the roles given to those within the group who are considered most demanding, most disruptive, most challenging. Terminology assigning roles such as "a subhuman organism" or "a menace" has not infrequently been used for these persons. Societies response to such attributions, when and if used, has developed accordingly. The "menace" was dealt with, the "subhuman organism" was treated thereafter, being put away, either entirely or at least out of sight. All cultures are familiar with this situation. For some it can be seen as a historical tragedy, for others it is still a current problem.
2. An institutional tradition
The recognition of persons with intellectual handicap as a clearly defined group, with needs specific and distinct to their particular handicap led in Sweden to the creation of a special organization for the provision of special services. This process developed during the second half od the 19th century and can in retrospect be seen as the start of what came to be a more than 100 year long institutional tradition. Looking back on this period one sees an increasing tendency to differentiate between those with greater, or lesser, degrees of intellectual handicap. This differentiation is concerned not only with distinguishing between levels of intellectual functioning but also with the necessity of diffentiating between the forms of support to be provided for those concerned.
Persons with intellectual handicap have traditionally, in Sweden and in most cultures, been categorized into two groups. The terminology may vary, curables and incurables when reviewed from the medical perspective, from the pedagogical point of view, the educable and the uneducable. This distinction mot only indicates these persons functional disability or future prognosis, but also societies responsibility towards them. For example, the uneducable, not being regarded as capable of benefiting from current educational facilities were considered by society, not to require such provisions. This group could therefore be rejected and excluded from educational systems, being instead referred to a life, often institutional, where care and survival were the only objectives.
Amongst those excluded were those with the most extensive needs, the ones most difficult to understand, the ones whose behavioural patterns gave rise to managerial problems, those who to-day would be termed as persons with challenging behaviour. These persons were to be found within the institutions, often on the back wards, subjects of least interest, recipients of least support, subjected to methods of custodial care which came to be severly criticized.
3. Social reforms
The social reforms introduced in Sweden from the middle of the 1940:s reflected the intoduction and establishment of the welfare society then being developed in many western European countries. This period of reform included the questioning, and to a large extent the rejection, of the institutional tradition which had been established in the mid 19th century as a way of providing support for various dependent groups, including those with intellectual handicap. However, the questionability of institutional life as a form of service and support was raised mainly with regard to those handicap groups who were regarded as "partially ablebodied", those thought to have a developmental potential and who could become self supportive. In other words, it remained acceptable that persons with more extensive disablities, the incurable or uneducable, remain within the institutional system of support.
As part of the social reform programme it was, nevertheless, thought necessary that the existing institutions be reviewed, that modernization programmes be introduced and that a new series of institutions, based on current knowledge and awareness, be developed. Apart from the establishment of many new institutions the reform processes of the Forties and Fifties led to a differentiation within the institutional system, partly between the different establishemnts, and even within one and the same institution. The differentiation was based mainly on the characteristics of the presumptive inmates or residents, a further categorization of these persons thus becoming more necessary. This categorization came to be based not only on intellectual abilities but even on behavioural characteristics and patterns, and to some extent on diagnostic classification.
This development of service provision was given legisaltive status in the 1967 Act which for the first time stipulated that the provision of all services for persons with intellectual handicap was to be the responsibiity of the County Council authorites. Prior to this, responsibilty had been divided between State and County, the state special hospitals being run and financed at national level. The county authority now became responsibility for all its citizens, with intellectual handicap, who were in need of special services.
This responsibility applied to all persons with intellectual handicap, no distinction any longer being made between the educable and uneducable, schooling now becoming compulsory for all, irrespective of level of competence. These services could however still be provided by means of placement at a special hospital, but now under the supervision and finanicial responsibility of the person's home county.
4. The special hospitals
In the ongoing process of categorization of persons, and the differentiation of services which had already begun, the special hospitals came to have the function of providing for those with the most extensive needs and most deviating behavioural characteristics. In consequence, the local county authority was not expected or required to provide for these persons at county level, no responsibility was felt or taken for these person's particular needs and no knowledge or expereince gained as to how to meet these needs. They were a group for whom it was presumed that other providers were the experts, and that at the special hospital the specialists were responible for their care and treatment. The objectives that came to be set for the hospitals had, however, a contradictory implication.
At the time of the 1967 Act, which regulated the exact nature of the services to be provided, there were 24 county authorities in Sweden and 5 special hospitals. These had been in use since the end of the 1920:s and had gained a reputation as places for custodial, and for many, coercive care, providing for all with extensive needs, irrespective of the character of the persons individual needs. One found persons with profound intellectual handicap, multi-handicapped persons, those with additional sensory disablilities, those with social-psychological complications and behavioural disturbances as well as alcohol abusers and offenders who were intellectually handicapped.
As a consequence of the legislative changes which had taken place, specifying the role of the special hospitals and the nature of the care to be provided there, and emphasizing the fact that the person's home county now had responsibilty even for these persons, objectives and treatment methods at the special hospitals came under review. The needs of those persons already in the hospitals were analysed, requirements for new admittances and criteria for discharge became more stingent and new objectives were set for treatment programmes.
New professional groups from the educational and behavioural sciences were introduced to complement the otherwise medically dominated tradition of care. Issues of intellectual handicap were, at the time, seen as belonging to a rapidly developing field for these new professional groups and consequentially an area which attracted many with entusiasm and optimism as to the potentialities of working with these persons.
It became clear, in this period of re-organization and development, that the role of the special hospital was changing. From being a placement alternative (often permanent or at least long-term) for person's with extensive needs, new expectations were being expressed. With the introduction of new specialist groups of professionals the objective became clear, that treatment methods were to be developed which would enable the patients to return to their the home county and to the mainstream services provided there. It was no longer intended that a person admitted to a special hospital should remain permanently in hospital care.
This switch in directive, from custodial care to active treatment, gave rise to a dramatic search for and endeavour to try new ways and methods of dealing with the problems of these persons. The inter-disciplinary co-operation which was seen as possible at the special hospital was considered advantageous in developing treatment programmes which would alleviate or dispense with problem behaviours which had been the reason for admission. Extensive experience, and documentation of it, exists from the efforts of this period in the early Seventies. It was a productive time and much new knowledge was gained, providing a better understanding and optimism regarding the origins and development of deviational behaviour and its treatment. For many individuals dramatic changes were brought about, often through a combination of different approaches together with entusiastic and committed staff approaches.
The role of the special hospital, however, was that these persons, when their behavioural patterns or personal well-being had improved, should be discharged to their home county. Placement at a special hospital, far from the person's home community and family, and in conditions far removed from the normal way of life advocated as the critria for a good service, was not regarded as a permanent service alternative.
The process of discharging improved patients gave rise, however, to a new set of problems. One can summarize these in a three respects. Firstly, many of these patients were unknown for the local authorities, having been in special hospital care for considerable time. The types of problem they represented, ways of meeting them and their individual needs were also unknown. They were strangers to those who were to be responsible for their future support.
Secondly, the specialists and professional groups who had developed ways of working with these patients, and the basic staff involved in their daily care, remained at the special hospitals. Neither were there counterparts, with corresponding competence, present or developed in the local service. And most important, the environments and conditions in which the person had developed a more adequate and acceptable life style were left behind and replaced by unfamiliar settings and patterns of life.
And, thirdly, a practical problem often arose. It was not infreguent that many difficulties were presented in finding placement alternatives for these persons. Waiting lists already existed to the local services, these persons bore a reputation, were labelled as belonging to the special hospital clientele, and were, compared to other potential newcomers, viewed with mistrust and lack of entusiasm. Even when alternative placements were found and discharge made possible, rejection processes easily came into effect with new requests for admission as a consequence.
The conclusion drawn by many professionals active during this period in the early 1970:s was that many advances could be made, that for many of these persons new conditions of everyday life could be created and behavioural difficulties minimised BUT that these conditions and life styles must be established in situations which could be maintained and where continuity in service and support is guaranteed.
It was not seen as realistic to continue to refer persons to special hospitals, with specialised environments and specialist support and to assume that changes occuring in these settings be maintained in entirely new conditions. The view that this was possible, reflected, it was maintained, a clinical and medical view to social and behavioural problems and was not conducive to the development of new and lasting life styles for those with the most extensive needs.
When the special hospitals found it necessary to demand that the county councils contracted a specific number of placements and quaranteed that they be paid for, a decision on the future of the special hospitals became unavoidable. Inevitably these developments gave rise to an intensive debate on the role, nature and very existance of the special hospitals and led, by the end of the 1970:s, to their closure. The one exception was the maintainance of certain units for those committed to care as legal offenders.
5. Alternative special services in the county
The experiences from the early years of the Seventies had reinforced the view, already held by many, that those persons with extensive needs, who of tradition had been referred to the special hospitals, were persons who required and would continue to require very special support for the greater part of their lives. Their problems were not of a temporary nature.
When improvements did take place this was to a large extent dependent on changes made in the person's total life situation, and it had been shown that such changes could seldom be maintained after discharge, or on being moved to another service form. Permanent placement at a special hospital was not, however, seen as an alternative to be considered. The general development in society concerning the rights of persons with intellectual handicap to live as normal a life as possible, within the ordinary community, was being recognized as a right even for those with the most extensive needs. However, at this point, in the mid Seventies, this was interpreted as a right for these persons to receive the support and treatment they required within the framework of the ordinary mainstream service provided for others in their home county. As the decision to close down the special hospitals had been taken it became necessary to build up alternative special services at county level.
The Act of 1967 had, in addition to transferring responsibility to the County Councils, even clarified the financial implications of this transfer. Funds designated to finance the service provided by the special hospitals could be transferred to the home county if it be shown that it was to be used for the same purpose, namely as an alternative to referral of persons to the special hospitals. Later agreements on the closure of the special hospitals included such financial transfers thus facilitating the establishment of the new alternative special services within the framework of the local authority.
In the development of the new services the practice of differentiation and categorization of persons according to their behavioural or diagnostic characteristics continued. The differentiation system developed at the special hospitals was often used as an prototype for the type of special facilities to be built up in the home county. In most of the country these special units were located to already existant services, for example a residential home, each county having at least one large institution for persons with intellectual handicap. In some cases existing wards were made use of, in other cases new premises were built, though often within the grounds of an existing institution. In some cases new staff were recruited and when geographically reaslistic often from the special hospital. It was not unusual that the professional groups from the special hospitals were also recruited to provide the specialist competence required.
The most significant difference was that the service was now provided in the person's home county, nearer to their family and to their place of origin. In a country as large as Sweden this was clearly a big step towards integration. It also enabled those involved in working at the special units to get to know the local community and its potentials for support, and not least important it gave the county authority the opportunity to get to know these persons and their future needs. Another improvement was seen regarding the size of the special units. Most frequently they provided for 20-30 persons, even if they were localized within a larger institution. Compared to the special hospitals which had catered for between 200-400 persons this was clearly a positive development towards more personalized support.
The benefits from this development were reflected in the life of the persons concerned. In retrospect it is reported how beneficial smaller groups and more personalized support was for the individual. Persons who had lived on a ward for 20 now had a room of their own in a living unit for five, even if this was within a special facility for 30 persons in the grounds of a large institution!. Accounts of how general levels of wellbeing improved are many. On the other hand patterns of behaviour difficulties do remain, though often less intense or frequent.
However, the hierarchy of provisions and services, another characteristic of the institutional tradition, was maintained. Those leaving the special hospitals were at first seen to be moving up a step, to the next rung in the ladder of progress. But following the closure of the hospitals they were, once again, at the bottom and expected to show further evidence of improvement and competence if they were to be admitted to the more modern and integrated services now under development in the early 1980:s
The debate leading up to the closure of the special hospitals had mainly taken place within the framework and ideology of this institutional tradition. An accepted principle, that the provision of services was based on a categorization of characteristics or diagnostic labels rather than on the personal needs and wishes of individuals and their spokesmen was paramount. Services and facilities were planned anonymously according to established standards and practice. The needs of the persons with handicap were met by a referral and placement at the service unit/institution judged as most adequate. Should such a placement be found unsatisfactory a new referral could be made - seldom did the service adapt to the needs of the person. instead provisions remained relatively static in terms of content, staff ratios, treatment practice etc while the recipient of the service was seen as the mobile factor. The alternative special services came to be seen as further example of this tradtion.
6. The closure of all institutions
Parallell with this development and the "homecoming" process from the special hospitals during the early 1980:s another debate, and process of change, was emerging. The institutional tradition, which had originally been questioned in the Forties, though only for persons with a mild handicap, "the partially abledbodied", was now being disputed as a suitable means of providing support to persons with intellectual handicap on the whole. The most important question being asked at this time was what sort of life should persons with handicap be able, and allowed, to live? Were they to be always subjected to a life in institutions if they could not attain the level of competence required to reach the highest rung on the ladder of progress? Or was a life in the local community, with adequate support to meet ones personal needs, something to which everyone had a societal right?
At the same time it was becoming apparent that the institutions which had been built or modernized during the first years of social reform in the Forties and Fifties were now beginning to be run down and were not meeting the requirements of a modern services. Questions were therefore arising as to whether further renovation, rebuilding or replacement was to be undertaken, or should the services be changing direction entirely?
As with the special hospitals 10 years previously these questions, together with professional experience gained during the same period, gave rise to a new debate as to the form and nature of the service to be provided for persons with intellectual handicap. These experiences had exposed the limitations still imposed through placement at special units designed according to standard solutions rather than individual needs, the necessiy of moving persons according to their ability structures, and the continued centralisation and concentration of resources to special facilities rather than the dispersal of specialist support to the needs of the persons.
One of the most important reforms of the 1967 legislation had been the introduction of schooling for all persons, irrespective of level of intellectual handicap. This had, amongst other things, had the effect that more children with severe intellectual handicap had been able to remain at home. This generation were now reaching adulthood, seeking forms of support which would enable them to leave home but clearly resistant to the idea of institutional placement as an alternative. In the general debate which took place these factors comtributed to the standpoint, legislatively confirmed in the 1985 Act, that all institutions were to be closed down. Those persons who had once been brought back from the special hospitals, as well as others with extensive and special needs, were now a recognized group whose needs were to be met in the coming development of integrated services.
7. A life in the local community, with additional special support
In the preparation and planning of institutional closures those with extensive and special needs who received support within the framework for the institution were now included. The question now being asked being what provisions and forms of support did the person require if their needs instead were to be met from services in the local community? The difference in approach to describing these persons needs now, and on earlier occasions, was the shift in emphasis. The starting point now being the primary and basic needs for all persons, namely, a need for housing and a meaningsfull daily activity. This should be seen in contrast to the categorization of behavioural patterns and difficulties being used as a planning basis. In order to take advantage of housing within the framework for a normal life situation the special and additional needs must also be met, but in the context of a normal way of life, not a specialist unit.
Another significant difference in this change is that the hierarchy of services is now discarded and the persons life situation planned from a perspective of permanency. The support and resources provided now varying according to the persons needs, the resources becoming the mobile factor, not the individual.
During the last 5 years an increasing number of persons with severe behavioural difficulties have been receiving support within the framework for the new integrated services, the normal patterns and conditions of everyday being the basis for any specialist assistence or treatment which may be required. In most parts of the country specialist inter-disciplinary teams are established to serve the services as a whole. These terams are comprized of social workers, psychologists, physio- and occupational therapists and even educationalists. In some areas they even include a medical practitioner. In addition to such teams specialist support is, to an increasing extent, being obtained from within the generic services which provides for all citizens in the community. For many years the ordinary health services in the community have included all persons with intellectual handicap, as have even dental services, social services and psychiatric services. In some cases it has been considered advantageous to appoint certain professionals on a consultancy basis, or under contract on a part-time basis, in order to garantee a specialization in the needs of these particular persons. This has become relatively common procedure regarding the psychiatric services. Experience has shown the advantages of having access to the general psychiatric service, common for all, at the same time providing for a certain degree of specialization.
These developments during the last 50 years, as related to the situation and needs of persons with behavioural difficulties, exemplifies the gradual skift from an institutional tradition to one of integrated services. To a certain extent, in the developments of the last 5 years, one can perhaps even foresee a skift from the perspective of competence to a perspective of citizen as expounded by Ericsson (Ericsson....)
8. The Skaraborg experience
Skaraborg is a county in the west of Sweden which exemplifies the gradual change in how the needs of persons with extensive behavioural problems can and have been met. At one time the county authorities availed of the services of 4 different special hospitals, all of which were localized outside and at some considerable distance from the county boundary. In the general process of change resulting from the shift in responsibility, the local authority having become responsible for all persons within the county, new facilities were developed within the existing services.
The oldest residential institution in Sweden, established in 1866 was localized in the county of Skaraborg. In order to enable persons at the special hospitlals to return to their home county a number of wards at this institution were converted into a special unit for persons with special needs. These wards gained a special status and the staff were focused on working with persons with very particular needs, and, according to the practices being developed within the country as a whole, all additional supportive measures were provided.
9. Alternative services based on housing and daily activities
When the decision to close down the institution was taken the question arose as to how the alternative for these persons should be formed. To-day, one can see that these persons have also received services entirely comparable with those for all other persons who left the institution. The basis for each person is a housing situation, for many a separate apartment complete with bedroom, sitting room, kitchen and bathroom facilities, with separate entrance. Such apartments are located in close proximity to a shared facility composed of a common sitting/dining room, general kitchen, laundry room and in some cases hobby room. In addition to these groups of separate apartments some persons live collectively, sharing a large villa, each having a personal bedroom but sharing other facilities. For persons with behavioural difficulties there are, within the county, ten such group homes located in smaller towns, in rural settings and in ordinary residential areas of larger towns.
Common for both these forms of housing is that each has a specially selected staff group, specific for the persons living in the group-home. The staff have been chosen on a basis of personal qualifications rather than a standarized educational qualification, though the majority have a basic, often 2 year, training according to the requirements for work in the special services. Many have additional qualifiations from other areas, for example, education, handcrafts and some from the medical field. Each group-home has its own home manager whose quaifications also can vary. At some of the homes the manager is also responsible for the daily activities provided for the residents. This is the case when the daily activity provided is in close proximity to the home, for example, when outdoor activities like simple farming is the basis for a meaningsful daily activity.
For others daily activities are provided at the centers intended for other persons within the special services. For those still of school age ordinary schooling is provided. The arrangement of daily activities is planned on an individual basis so for some persons all, some or part of a day can be spent at the home, being engaged in the activities of everyday life. Adjacent to several of these group homes are small premises suitable for hobby, study or recreational activities, these even being used for individual programmes during the day.
10. Organizational structure of the service
The distinquishing feature for the services provided in Skaraborg is the organizational distinction made between the housing facilities for persons with exceptional needs and the mainstream housing for all other persons with intellectual handicap. For the latter group housing is organized and administered on a municiapal level, that is to say at a local level in the community, there being 16 municipalities within the county. In contrast housing for persons with extensive needs is organized and administered at county level. This is motivated by the need for a degree of specialization which is thought to be facilitated by a common organization, financially independent of the local municipalities and led by a common manager at county level. This common organization makes it easier to provide additional supportive measures, for example, training programmes for staff, councelling for managers and opportunities for common meetings and discussions.
An additional motivation is the fact that in Skaraborg the inter-disciplinary consultant teams, comprized of psychologists and social workers, and a part-time consultant psychiatrist, are also organized at county level. Their services are not, however, specifically reserved for the facilities for persons with behavioural difficulties, their being responsible for consultative support to all services within the county.
11. Characteristics of the service: good material standards, small groups and permanency
The experience gained from the five-year period during which this organization has been built up is first and foremost that this group of persons have acquired a much improved life style. Physically and psychologically they ave acquired a home. Materially they are living at a standard comparable with good housing from the 1990:s, in ordinary high standard residential areas of the community. Psychologically they have also acquired a home, many, for the first time being guaranteeed permanent residency. In terms of civil rights this means the right to be officially registered in the parish of residency and becoming a fullworthy citizen in the local municipality. This right was not granted to those living at institutions or special facilities.
Another aspect of the improved life style is the fact that none of these groups are composed of more than five persons, and each individual has their own private sphere. Some characteristic consequences of small groups are better knowledge and awareness of the personalities and needs of those in the group and thereby better opportunities to predict and foresee events, both for the residents and for the staff. This in turn gives better control over events and activities and over the structure of everyday life. These conditions are unanimously considered as desirable and necessary to improve levels of harmony for persons with behavioural difficulties.
Another characterisitc of the service at the present time is that many of the staff have known these persons for a long time, have cared for them in previous service forms and have been able to follow their progress through this process of change. The continuity in staff support and their ability to take advantage of the new more postive conditions has been a major contributory factor to the personal development which has taken place. In terms of methodology their personal committment and knowledge, from experience, has been the most supportive contribution to this development.
12. Weaknesses in the service - issues to be addressed
Regarding the service from a historical perspective, in relation to previous experiences of providing for persons with extensive needs througout this 50 year period, one can foresee two weaknesses in the present system. One is at an organizational level. Present services for these persons are not an integral part of the mainstream service for persons with intellectual handicap in the county, responsibility being at a level beyond the municipality. The service to-day provides for all those who were already identified at the time of re-organization when the institutions were closed down and for them the service being provided is intended to be permanent. This implies that they should not be automatically moved on, leaving vacancies for another, as was earlier practice. This gives rise to the question of by whom, and where, are new needs to be met? Can the local municipaliteis, from the experience now being gained, make adequate provisions in the future, or will a new system of referral, as once took place to the special hospital, be developed. This is one of the issues which needs to be addressed.
The second weakness can be seen in the nature and extent of professional support. This is to-day provided by the inter-desciplinary teams responsible for support to all other services. It is expected and presumed that they have, or acquire, the competence required to support even the services for persons with very special needs. In practice this is not always the case. It is of tradition well recognized that not all professional groups are interested in, or have a predisposition to specialize in, the needs of these persons. They are not regarded as a group with a "good prognosis" and therefore not a rewarding group to work with. In a situation where priorities and choices are made the needs of these persons are often negelected or overlooked. One has seen how this gives rise to a vicious circle where lack of knowledge and ability on behalf of the professional leads to a lack of interest in their contribution from the presumptive recipients of their support, for example, staff groups, parents etc. They instead come to see themselves as self-sufficient and in time can even rejective of support and knowledge from outside.
In the present situation in Skaraborg this would seen to be a potential problem. The support provided for staff groups seems to have been dependent on the coincidental qualifications and interest of a team member or on temporary short-term training programmes in, for example, a new methodology. Once again, from the experiences of the last 50 years, one can see that the issue to be addressed here is how to heighten the level of awareness for the need for a systematic development and application of new knowledge, mew working methods and new practices. If staff are to maintain their entusiasm and committment more long-term and objective related supportive measures from professional groups will need to be integrated into the service.
The overall picture of conditions for persons with behavioural difficulties and extensive needs, as exemplified from the county of Skaraborg, is that they are being provided with a good standard of life and that as a consequence the problems resulting from their difficult behaviour have been reduced. Few systematic studies have been carried out during these years but it is maintained by those who have followed this process that even if these persons deviating and at times difficult and disruptive behaviour has not disappeared, the frequency and intensity has been greatly reduced. This in turn has resulted in a dramatic reduction in the use of custodial and coercive methods of care. These achievements would seem to have been made primarily through a recognition, not only of these persons specific needs but also of their right to a good life in spite of their behavioural difficulties. No demand on behavioural improvemnet has been made as a criteria for being provided with a standard of service comparable to that offered to others. This can be explained as resulting from a committment, by the organization and by the staff, to providing a good life for these persons, irrespective of their behavioural patterns. The question that remains is whether this is enough to quarantee a good life for future generations of persons with behavioural difficulties?