BEGÅVNINGSHANDIKAPP OCH FRIHETSINSKRÄNKANDE ÅTGÄRDER
PERSONS WITH INTELLECTUAL DISABILITY
Among persons with intellectual handicap there is a group whose needs can be seen as exceptional. The reason for these exceptional needs can be found in the fact that these persons, besides their intellectual handicap, have an additional handicap which greatly increases their need for support. These persons with exceptional needs are not a homogenous group but are persons with many types of problems. These could, for example, be social, psychological or psychiatric problems, problems brought about by autism or behavioral issues. Very often this additional handicap causes the person great personal harm, even suffering. A recognition of this situation must be the starting point for the task of finding adequate support for these persons.
It is difficult to meet such needs through the traditional services offered to persons with intellectual handicap. These persons often challenge the traditional work of these services as they require support over and above that which is being offered. In this presentation we would like to look at the development of support systems for this group, as they have developed within the general change of services which has taken place in Sweden (Ericsson 1991).
2. THE SPECIAL HOSPITAL
Services in Sweden, since they were established during the second half of the nineteenth century, have been based on an institutional tradition. The basis of this tradition was the residential home for adults, these being found all over the country, with at least one in each of the 25 counties. This institutional tradition dominated services for a 100 year period, up until 1954. With the Act of that year a shift away from the institutional tradition was begun.
These residential homes were, however, relieved of the burden of care for persons who, in addition to their intellectual handicap were considered to have exceptional needs. This responsibility had instead been handed over to 5 national special hospitals. The background to this development can be found in the last century when the residential homes were first established. The owners of these institutions demanded that the responsibility for services to persons with exceptional needs was taken over by national bodies, and a demand was made for special "state asylums". This demand was not met then but in 1930 a series of special hospitals were started, these being responsible for the care of persons with exceptional needs, and thereby relieving the residential homes from this task. The special hospitals were established in military barracks which had become vacant due to a de-militarization program during the twenties. Later, in the sixties, these hospitals were modernized, though mainly on a material level (Söder 1978).
The residential homes were characterized by an educational tradition, whereas the special hospitals were run on the same lines as psychiatric care, this being the reason for calling them special. Apart from this characteristic there were no grounds for calling them special. On the contrary, they lacked specialized services and therefore failed to meet the exceptional needs of persons being admitted. A custodial system of care was developed, which, when it became public at the beginning of the seventies gave raise to a debate and a view that such institutions were unacceptable (Ericsson, Nilsson, Thunman & Wilén 1973).
The special hospitals were further questioned as the development of the socio-political idea represented by the normalization principle became widespread and was introduced into residential homes and special hospitals. With these ideas new programs were launched at special hospitals which led to success and showed achievements (Liljeroth 1974, Ericsson & Ericsson 1975). But, as they were based on the normalization tradition, refuting the dominant psychiatric tradition, they were questioned and ultimately not allowed to continue. Other programs were based on behavior modification and were also found to succeed (Nilsson & Thunman 1971, ). But the new behavior achieved by these persons could not be maintained as one could not control the conditions on the ward where they lived.
A problem consequential of the idea of the special hospital was related to the return of the person to the county from which he originally had been referred. No adequate support was provided in order to continue the work which had begun at the special hospital. Further criticism towards the special hospitals, expressed during the first half of the seventies, was based on the views emanating from the ideas of normalization. This came to be the starting point of their dissolution, leading to their finally being closed down. From 3.500 beds during the beginning of the seventies, 20 remained in 1982.
3. THE RESIDENTIAL HOME
The residential home was a traditional institution intended to provide a home for those persons living there. They were not expected to provide for those with exceptional needs as they were to be referred to the special hospital (Ericsson & Ericsson 1980).
As developments of the seventies led to the reduction in the number of beds at the special hospitals, persons were moved back to the county from which they originally came. The residential home was given the task of meeting their needs. This was often achieved by designating particular wards for these persons, giving these wards extra resources. But neither the tradition nor the competence was adequate enough to receive them and to arrange sufficient support within the residential home. In addition, the dissolution of residential homes had already begun.
4. INSTITUTIONAL CLOSURE
The special hospital and the residential home represent the way in which services to persons with intellectual handicap and exceptional needs have been met within the institutional tradition. This is, however, a tradition from the past as institutional services have now been exchanged for community services (Ericsson 1985).
This shift has its roots in the developments of the forties and a new socio-political idea concerning support to persons with handicap. With the introduction of the welfare society, the normalization principle was formulated. Instead of continuing the institutional tradition after the second world war, the possibility now arose of giving the welfare society responsibility for offering support to persons with intellectual handicap. This was considered desirable and the modern social services of the welfare society were also found to be suitable for persons with intellectual handicap. But only for those with a mild handicap. It was intended that those with a more severe form of handicap still be referred to modernized residential institutions.
With this view of using institutions for those with a more severe form of handicap, it was intended that persons with intellectual handicap and exceptional needs still receive their support at the residential home and the special hospital.
Following legislation from 1985 all persons with intellectual handicap received the right to a life in community, and work on the closure of residential institutions was begun. This gave rise to a new situation for the task of arranging services for persons with intellectual handicap and exceptional needs. With the legislative right to a life outside the residential institution, through the support of community services, a new starting point had been established. Persons with intellectual handicap, irrespective of degree, were recognized as full-worthy citizens with a right to participation in the ordinary community. It also meant a recognition of their right to support in order to make this participation a reality (Ericsson 1995).
5. COMMUNITY SERVICES
With the normalization principle a new goal was brought into the task of arranging support to persons with intellectual handicap. The normal life, led by persons without handicap in the community, was also found desirable for persons with intellectual handicap. Therefore services had to be created which would contribute to a more normal life (Kebbon et al 1981).
The four cornerstones which make up community services are firstly, the house where one lives. The houses of the community, localized to the housing areas in the community, with support from staff, channeled to the persons during evenings, nights, mornings and at week-ends. Secondly, during the day, daily activities, if the person is not in salaried employment, channels support through a choice of activities found suitable for the person. This takes place outside the house, in the areas of the community where work and activities takes place. A third component is special support from professional groups, mainly social-workers and psychologists, available for the person with handicap and for support to staff in housing and daily activities. This is provided within the framework of general services, the fourth factor, which can be found in the ordinary community. The more these services take responsibility for persons with intellectual handicap, the less need there is for special services.
These community services make up the framework within which to create support even to the persons with intellectual handicap and exceptional needs. For this to become a reality arrangements have to be made to strengthen these services in a variety of ways.
The Vallentuna experience
During the closure of a special hospital a group of 25 persons, with intellectual handicap and exceptional needs, moved to the suburbs of Stockholm where the community service model was used to organize services for them. Experiences from this process shows a series of ways in which traditional community services need to be strengthened to suit the needs of these persons (Ericsson, P. 1980, Ericsson, K. 1989).
The aim of the project was to achieve as normal a life as possible for the group who had left the special hospital. Housing was found in the community for some, for others it had to be purpose built but all persons were to live in the housing areas of the community. They also participated in daily activities outside these houses. For this to become a reality great energy had to be given to the choice of localization of these places for housing and daily activities. They should not be in places too close to the ordinary life, and yet not too far away from the ordinary life.
Staffing was a major issue, the number of staff having to be high in order to meet the problem behaviors of these persons. Apart from the size of the staff group, careful selection was necessary in order to find staff suitable for working with these people. They were also provided with training relevant to the tasks they were to carry out and to the needs of the persons. Continuous staff support and supervision was also necessary.
Individual programs for personal development were developed for each of the persons receiving these services. Not one but various methods of therapy were used, depending on the different problems behind the exceptional needs of these persons.
Professional support from outside was vital. Various professional categories contributed to the work being carried out with each of the persons living there, and to the tasks of the staff-group. A major task was the establishment of relationships to the general services of the community, enabling them to take their responsibility for these persons.
Through-out this project it was constantly confirmed that services need to be personalized in order to meet the needs of each person. Maintaining the commitment of those concerned, staff working on an individual level, those responsible within administration, persons providing support from outside as well as those in general services, was a major aspect of the task being carried out.
6. EXPERIENCES IN SKARABORG
Skaraborg, a county in the west of Sweden, exemplifies the gradual change in how the needs of persons with intellectual handicap and exceptional needs have been met. At one time the county authorities availed of the services of 4 special hospitals, all of which were localized outside and at some considerable distance from the county. In order to enable persons at these special hospitals to return to their home county, a number of wards at the main residential home were converted into a unit for these persons. The wards gained a special status and the staff were focused on working with persons with these needs, and, according to the practices being developed within the country as a whole, additional supportive measures were provided. But here, as in the rest of the country, the residential home did not meet the new demands on a life with quality offered by the emanating community services.
When the decision to close the residential institution was taken in 1985 the question arose as to how services for these persons should be formed. To-day one can see that these persons have also received community services entirely comparable with those for all others who left the institution (Ericsson 1994).
For these persons there are, within the county, ten group homes located to smaller towns, in rural settings and in ordinary residential areas of larger towns. This provides housing for each person, a separate small apartment with bedroom, sitting-room, kitchen and bathroom facilities, with separate entrance. Such an apartment is located in close proximity to a shared facility, a common sitting/dining-room, general kitchen, laundry room and in some cases a 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.
It has been common that staff are specifically selected for the persons of the group-home. They are therefore chosen on a basis of personal qualifications rather than standardized educational qualifications. Each group-home has its manager. At some of these group-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 their daily activities. Adjacent to several of these group homes are small premises suitable for hobby, study or recreational activities, these even being used for individual programs during the day.
For others daily activities are provided at day activity centers intended for persons with intellectual handicap. For those still of school age ordinary schooling is provided. The arrangement of daily activities is planned on an individual basis.
Special support within community services
A distinguishing feature for services provided in Skaraborg is the organizational distinction made between the housing facilities for persons with exceptional needs and the mainstream housing for other persons with intellectual handicap. For the latter group housing is organized on a municipal level, that is to say at a local level, as there are 17 municipalities within the county. In contrast housing for persons with exceptional needs is organized 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 support for example, training programs for staff, counseling for managers and opportunities for common meetings and discussions.
An additional motive is the fact that in Skaraborg the inter-disciplinary teams, comprised 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 exceptional needs, they being responsible for support to all services within the county.
Achievements of community services
Physically and psychologically persons with intellectual handicap and exceptional needs have 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 guaranteed permanent residency. In terms of civil rights this means the right to be officially registered in the parish of residency and becoming a citizen in the local municipality.
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 behavioral difficulties.
Another characteristic of this service at the present time is that many of the staff have known these persons for a long time, having cared for them in previous service forms and thus 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 and more positive conditions has been a major contributory factor to the personal development which has taken place. In terms of methodology their personal commitment and knowledge, from their experience, has been the most supportive contribution to this development.
The experience gained is first and foremost that this group of persons have acquired a much improved life style with good material standard, in small groups, with permanency and with committed staff.
An issue which needs to be addressed
A point to be developed can be seen in the nature and extent of professional support. This is to-day provided by the inter-disciplinary teams responsible for support to all other services. It is expected and presumed that they have, or will 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 the present situation in Skaraborg this can be 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 programs 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, new working methods and new practices. If staff are to maintain their enthusiasm and commitment 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 intellectual handicap and exceptional 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 behavior have been considerable 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 the specific needs of these persons but also of their right to a good life in spite of their behavioral problems. No demand on behavioral improvement has been made as criteria for being provided with a standard of service comparable to that offered to others. This can be explained as resulting from a commitment, by the organization and by the staff, to provide a good life for these persons, irrespective of their behavioral problems.
Looking at these persons and their services an achievement has been made. A shift from institutional to community services has been made resulting in a new structure and a new standard of services. This has been based on a new commitment from society and staff to the needs of these persons. Behind this lies a socio-political change leading to a recognition of the rights of these persons to participate in community life and their need for adequate support.
But more can be done. A pattern of life has been established and is now being sustained. The persons still have their exceptional needs and still need support to lessen the burden of these. Therefore it is desirable that they should be able to turn to professionals, persons with various therapeutic methods, who are able to meet their personal needs. A support is also needed by staff, from professionals outside the house or the day activity center, to maintain and to increase, their level of commitment and competence.
Services in Sweden are today characterized by an ongoing shift from institutional to community services. This is reflected in the support organized for persons with intellectual handicap and exceptional needs. The services which are being developed are formulated within the framework of the community service model. This needs, however, to be developed and strengthened in order to meet the needs of these persons.
This shift is based on the Act of 1985 which discarded the institutional tradition and residential institutions, leading to the closure of special hospitals and residential homes. Behind this lies a new role attributed to persons with intellectual handicap, and those with exceptional needs. They are recognized as full-worthy citizens, with a right to participation in community life. Their need for adequate support is also recognized. This has become the new starting point from which to build support for these persons within the framework of community services.
The Skaraborg experiences, which are presented briefly, illustrate that a lot can be achieved within community services. Through them a new pattern of life has been achieved and a higher living standard has become a reality. Staff groups, working with a considerable degree of commitment, has in several respects, led to a better life for these persons. There is, however, a need for more to be done, especially regarding professional support to the persons themselves and to staff. The limited support from these professional groups not only reflects a lack of interest from services, but can also be attributed to the interests of the professional groups themselves, who need to learn more about and to find an interest in persons with intellectual handicap and exceptional needs.
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