THE AMMAN COMMUNITY SUPPORT PROJECTS
THE SWEILEH INTEGRATION PROJECT
THE EARLY YEARS
The establishment of IM/SOIR in Jordan
The Swedish Organisation for Individual Relief (IM/SOIR) began its present work for persons with intellectual disability in Amman at the end of the 1960:s. On the request of the Jordanian government a project for children had already begun in Jerusalem but because of the outbreak of war in 1967 and the change in national borders, it was decided to move to Amman. The service began on a small scale, on a personal and informal basis, the main emphasis then being placed on simply finding a situation of care for children whose physical and social needs, because of the lack of any form of support for them or their families, were found to be immense. The work begun 30 years ago can retroactively be seen as an extensive pioneer task where the services which gradually evolved came to include residential facilities, schooling and daily activities for at its most 150 persons from pre-school age to adulthood.
From simple beginnings in temporary rented premises IM/SOIR moved in 1975 to its present site, there establishing what has come to be known as the Sweileh Center, Sweileh then being a small township on the outskirts of Amman. The center came to consist of school buildings and training facilities for around 100 children with boarding facilities for 50, a group home for 6 young adults who had no family contacts and a workshop for approximately 40 adults. In addition to the administrative buildings, dining room and staff rooms, there are premises for the specialist staff such as various therapy rooms and a hall for sports. The grounds are extensive and include sports facilities, a house for social gatherings as well as staff accommodation, initially intended for Swedish staff members. Since the establishment of the center IM/SOIR has had a significant role to play in the provision and development of services for persons, especially children, with mental retardation, the service provided there being seen as exemplary for the later development of other services in Jordan.
A background in Swedish services
The establishment of IM/SOIR in Jordan took place at a time when new legislation regarding services for persons with mental retardation was being implemented in Sweden. The 1967 Act had for the first time given all children the right to schooling, irrespective of the severity of their disability, and had placed responsibility for the implementation of the services of the Act on society. These were to be made available through the establishment of special residential institutions, including boarding schools. The objectives and practices which were being established by IM/SOIR in Jordan were therefore based largely on the system of services then currently under development in Sweden (Ericsson 1993).
It is in this context that the center at Sweileh in Amman should be seen, its establishment being a reflection of the development which dominated the Swedish scene in the 1960:s and 1970:s. One characteristic of this period was a localisation to secluded areas and the concentration of the various disability services, as well as staff accommodation and administration, to one large facility. In Sweden this included the establishment of a series of modern residential institutions providing for all age-groups, comprised of both housing facilities and daily activities for children as well as adults. The Sweileh Center, apart from its adjustment to the Jordanian style of building, is in many ways based on the model of the residential institution being built at this time in Sweden.
Towards a community based approach in Sweden
During the early years the support of Swedish staff was considerable. Not only the director but many of the special teachers, nursing and care staff and specialists, for example occupational therapists, were recruited from Sweden. Their task however was not only to care for and train the residents and to support their families, but also to train Jordanian staff, providing opportunities for teaching and practical experience for these professional groups in particular. In retrospect one can see that many persons, both those receiving support, and staff who have also acquired training and experiences, have passed through the center during these early years.
The Swedish staff were recruited because of their experience of similar work in Sweden and could therefore introduce working methods previously unfamiliar in Jordan. This in turn provided the Jordanian staff with qualifications which gave them new opportunities to contribute to Jordanian services being developed. With the increasing number of qualified staff becoming available in Jordan, the number of Swedish staff was gradually reduced and in 1990 the first Jordanian director was appointed and the role of the two Swedish staff members became primarily advisory in character.
During the same 20 year period developments were also taking place in Sweden. In particular one finds the beginning of the provision of schooling through special day schools, enabling parents to keep their child in the home while receiving support in the local community. Initially many of the schools were regarded as being primarily for those with a mild intellectual disability whereas children with more extensive needs were still referred to the residential institution or boarding school.
But a transition had begun to take place, from the residential institution to the establishment of facilities in the community where the child lived, and where other children attended school. This can be seen partially as a reflection of the general school reforms of the period and has with time successively led to the present situation where all residential institutions have been closed and all children with mental retardation receive the support they require through locally provided day services, educational and social.
DEVELOPMENT AND CHANGE
Persons with extensive needs
One can see that during the 30 years that have passed since the Sweileh Center was started much has happened in the field of services for persons with intellectual disability, in Sweden and internationally, including Jordan. The services at Sweileh have also varied in character during this period. From being primarily a residential center for children, with training and programmes for the family as part of the support offered, it became a center for all age groups with the provision of schooling, vocational training and sheltered work for adults.
For the children, and even some of the younger adults with a mild disability, alternative opportunities and services have been developed in the community. Many schools have now been established which can provide for these children, thus enabling them to live in their homes and attend on a daily basis. Some of these schools have been inspired by the experience gained through the work at Sweileh and staff trained there have been able to contribute to their establishment. As a consequence the pre-school, special-school and workshops at Sweileh have successively, during the 1980:s, admitted persons with more severe forms of disability. Staff have accordingly had to acquire new working methods suitable for meeting their particular needs.
This process of change was not without its problems, for the staff at the center and even for the families of those admitted. The earlier tradition of receiving persons with a mild disability often had the rewarding consequence of seeing immediate development and the child being able to leave the center after having acquired certain elementary qualifications and skills. The general practice had been that a child was admitted for a limited time, a "training period", during which the family was involved in the programmes being offered and a return to the home was the main objective. Following a period at Sweileh some children were then able to go on to other schools, others into adult life, having gone through the vocational school at the center. When it was found difficult to find adequate daily activities for adults, a sheltered workshop, started in 1980, was available for the adults who had passed through the school and returned to live in their family home. But the objective remained that a purposeful daily activity outside the center was desirable, therefore the workshop maintained its tradition of training persons for a life in the community.
A need for reappraisal
The admittance of children with more severe disabilities throughout the 1980:s required not only that teaching and training methods needed to be revised but even the objectives and goals for the task of the center. But these issues had not been adequately handled. Most noticeable was the need to recognize and undertake measures to deal with the reactions of staff who considered either that they had not succeeded in training the child sufficiently, or that the child was unreceptive to training and therefore not worth being admitted to the center. It was not self-evident or automatic that all those concerned had the insight to understand and accept that a child with a severe disability was also in need of support, but in other forms, and that the support should be extensive and probably required throughout life. To achieve this the existing short-term training programmes would need to be replaced by other forms of supportive measures which could be provided on a permanent basis.
In this situation it became clear that there was a need for a reappraisal of the role of the center and of its working practices. From having been conceived of as a service for training and preparation for life in the community and thereby serving many as they "passed through" the center, wishes were being expressed that it instead be a place for long-term care, families feeling unable and reluctant to receive their child back into the home where no support services were available. As a consequence waiting lists had become a practice, and stagnation a fact. A choice was going to have to be made as to which direction future developments should take.
A review of services
Early in 1994 a study of the Sweileh Center was carried out in order to analyse and evaluate the work with regard to the goals set for the services being provided, and to assess the working conditions, as well as the working practices being used (Ericsson 1997). The conclusion drawn from this study was that the organization was in need of review, starting with the objectives for the services. If the center was to adapt to the policies being developed within other services for persons with intellectual disability, internationally and in Jordan, and to the needs of those currently seeking support, several changes needed to be made. It was also pointed out that if the reputation of IM/SOIR as a pioneer in the field of services for persons with intellectual disability was to be maintained, the future service should be in line with the current international course of development. This indicated a move towards a community orientated approach where long-term systems of support, based on the individual and cultural needs of those to be served, are provided in their local community.
The study showed therefore that changes had to take place in several areas, starting with the formulation of goals and objectives relevant for the present-day needs of persons with intellectual disability, and their families, in the Jordanian society. This in turn required that working methods and approaches were developed which were consistent with the formulated goals. This necessitated that a choice be made between a continued emphasis on the personal care and training of the child with the possibility of long term placement at the center, or the introduction of a wider view of community based support, directed to and made accessible for the whole family within their local community. In either case new working methods needed to be introduced, partly in terms of forms and methods for support, but also more open and creative communication between various staff departments and levels within the center and in relation to other service providers in the community. A prerequisite for such change was a change in the existing administrative routines and the organisational structure of the center.
The review had shown that a standpoint had to be taken on future development. One alternative lay in the retention of the center, maintaining a centralised institutional system of care. This however, would have involved a modernization of the premises if the facilities were to correspond to current standards and to the needs of those seeking support, and an investment in the existing buildings would therefore have been necessary. Another issue of importance was the choice between a residential service or attendance on a daily basis, the later entailing an extension of the existing transport system. The study had, however, pointed to, and recommended, the choice of an alternative approach, namely the provision of services within the community to which the person with disability belonged.
The principles on which this approach is based are widely accepted, implying the right for a person with a disability to live in the ordinary society, there receiving the support needed. To a large extent there is an international consensus on these matters, especially with regard to the principles and goals for the services to be provided (Ericsson & Ericsson 1995).
Differences may occur regarding how and when these principles can be realized, but few dispute the right of these persons to be integrated into the life of their society. An acceptance of these principles is professed in Article 3 of the 1993 Jordanian Law for the Welfare of Disabled Persons and is the central issue addressed in the adoption by the UN in 1994, of the Standard Rules for the Equalisation of Opportunities for Persons with Disabilities.
This alternative is based on the idea of maintaining the family home as the living unit for the child, while the family, and the child, are provided with various means of service, support or care during the day. Such service must of necessity be available within reasonable proximity to the family home so as to facilitate family participation in the daily life of the child. Such an alternative offers the child and its family a system of care based on the principle of integrated services and community participation.
For adults with disability the alternative implies the provision of services and support, inclusive of housing and a home, within the context of the normal life of the society to which the person belongs. The consequences of the application of these principles for the IM/SOIR center in Sweileh was that the existing services be transferred to other areas of Amman, namely those where the child or adult had their family home. This was described as a question of integrating existing services into the community to which the person belonged. This alternative approach came to be termed "the community based approach".
The choice of a community based approach
If IM/SOIR, as a Swedish based organization, was to adhere to the principles established and developed during the last 20 years and for which Sweden is renowned internationally, the choice was obvious. The choice was also obvious if IM/SOIR was to maintain its role as pioneer of new approaches and methods. However, any process of change takes time for introduction, consideration and preparation before the task of implementation can begin. The realization of the ongoing process of change began for the Sweileh Center when the Board of IM/SOIR, at its head office in Sweden, formally decided, in January 1996, to embark on the alternative approach of developing a community based service to replace the existing service provided through the center at Sweileh. The recipients of the future service were to be the existing group of children and adults already attending the center, and the provision of support was to be guaranteed through the transfer of resources, human and financial, to the new services to be developed. This decision marked the start of what has come to be called "The Sweileh Integration Project".
THE SWEILEH INTEGRATION PROJECT
Preparation for change
Prior to this decision changes had already begun to take place. Based on the intensive ongoing discussions as to the future role of IM/SOIR, initiatives were already taken in the direction of the recommendations from the earlier study. The administrative organisation of the center had been reviewed and changes introduced regarding the division and levels of responsibility. Discussions had also begun concerning further organisational changes required for the implementation of the community based approach and for the task of transition.
A study-programme for staff had been started through which some of the critical issues taken up in the earlier study were addressed. These had included among other matters, questions such as who would be the future recipients of an integrated service, what will their needs be and what qualifications and competence will be required in order to meet these needs? How should these needs be met in their cultural context and what material requirements will be necessary? What community services do already exist which would be conducive to meeting these needs?
As a consequence of these discussions even some structural changes had taken place. The residential care-home to which school-age children had been admitted on a yearly basis, was for example closed. The new relationship was developed with the families of these children, and the day service they received was given the character of a regular school and negotiations started to have this service recognized as such by the authorities. Of necessity this required the development of the transport system provided by the center, a task which indirectly led to a greater knowledge and understanding of the personsī home, family and local community. The group-home for 6 young adults was further developed and discussion began as to how a future service should be formed to meet the needs of this group.
The objective of the project
During the years since IM/SOIR began its work in Amman the services provided through the Sweileh Center have given training and care to children and adults with a disability, support to their families and training to staff both within and from outside the center. Much effort, materially and in terms of the transfer of knowledge and working practices through the presence of Swedish staff, has been invested in the development of the center. The work has, however, until recent years, been built mainly on the institutional tradition where resources are concentrated to a specialised and centralised organisation. Experience of community based work was therefore limited and little knowledge existed regarding the provision of support through the ordinary services of society.
IM/SOIR has now, through its decision to embark on a further process of development in Jordan, taken on the task of developing the forms of support and expertise necessary to establish the new type of service. In the same way that an earlier institutional tradition was conveyed in the establishment of Sweileh, the experience of establishing community based services in Sweden is now being used to support the transition which is taking place to establish services in the local communities of Amman.
The integration project begun in 1996 has as its objective the integration and dissemination of the existing services provided at the center to locations and facilities in the communities from which the persons come. This has been based on the understanding that those attending the Sweileh Center, irrespective of the extent of their disability, have a right to live their life in the community to which they belong and that the support and services provided should facilitate the realisation of this ob-jective.
In the Jordanian society today some experience has been gained regarding integrated schooling for persons with a mild mental retardation. However, this experience is still very limited, especially with regard to providing for the needs of persons with a more severe disability. The task which has now been embarked on is therefore a challenge for Jordan as well as for IM/SOIR.
Major issues to be addressed
The start of the project, based on the principles agreed on in the 1996 decision, required that some major issues be addressed. They concerned the need for more basic knowledge regarding the persons concerned and their local communities. Firstly, who were the group of persons to be provided with support through the new service, and what were the needs and wishes of this group and their families? Secondly, what was the character of the local community to which these persons belonged, and to what extent could existing services and organisations be found and identified as presumptive partners for the development of an alternative to the services currently provided at the Sweileh Center? In order to answer these questions two surveys needed to be carried out.
Knowledge concerning the persons with a disability was to a large extent already existent among the staff at the center. It was already known that those admitted to the centre were those whose needs were most neglected, namely those with a more severe form of mental retarda-tion, some also with an additional disability. Usually, few services were available for this group. This had already indicated that priority should, even in the future, be given to this group. On the other hand little was known concerning the wishes and ideas of the families of these persons. In order to learn it was necessary to undertake a series of meetings with the families of these persons, partly as a means of informing about the changes taking place and partly to provide an opportunity for them to express their views concerning the family member concerned.
Parallel to this survey it was also necessary to acquire knowledge concerning the local community to which these persons belonged and the nature of any existing facilities or services of relevance for a future cooperation. As the extent of current knowledge on this question had earlier been recognized as very limited, a special study had been carried out to describe the existing services in Jordan for persons with mental retardation (Jaber 1994). This material could now be used as a basis for surveying the situation in the geographical areas or districts from which the present group of persons came.
A characteristic of a community based service is that it provides support in close proximity to the person with disability but also in liaison with other ordinary services in the community, not just in order to share knowledge and responsibility, but also facilities and resources. Examples of such services are local health centres and other medical services, social services and community centres, and recreational facilities. Relations with such agencies need of course to be developed, this being part of general working methods in a community based service. Coordination with other services or agencies for persons with disability, national and international, also need to be encouraged.
To achieve this contacts need to be established with existing local bodies and organizations and steps taken to find ways of cooperation. Such partners can vary depending on the local circumstances, government bodies, private organizations or other NGO:s being possible associates with whom to establish working relations.
Other issues in need of being addressed as a prerequisite for the running of the project concerned organisational and managerial matters, including the appointment of a Project Manager and the reorganisation of the administration at the Sweileh Center. The nature of the project management was decided on and the first steps taken towards forming the management and leadership group, both for the existing work at the Sweileh Center and the implementation of the integration project. These matters were not however finalized until early 1997. The nature and extent of support and direction from the Swedish head office was also reviewed and a Swedish consultant appointed to provide support on a part-time basis.
Throughout the period when the need for change had been investigated and analysed, the necessity for further knowledge and the development of new perspectives and working methods had been constantly emphasized. This was therefore seen as a further major issue to be undertaken and plans were laid for a continuation and development of the ongoing study-programmes, these being held in the form of workshops, seminars and public conferences.
The period of implementation
In the decision to realize the Sweileh Integration Project it was estimated that it would extend over a 4-year period, from the appointment of a project manager in 1997. Based on the preparatory work already carried out it was therefore possible to accomplish the first relocation of services during the second half of 1997. Characteristic for a community based approach is the location of services to places used by the public in the local community. In the case of this integration project one requirement for establishing an integrated service had however already been achieved.
The persons attending the day-groups, the day-school classes and the workshops were already living with their families. The problem which remained was that their services were located to one place, Sweileh, which for most of those attending was far from their home. Staff are also recruited from considerable distances from the center.
The starting point for the development of the alternative service was therefore the homes of the persons to receive services, the integrated alternatives gradually replacing those now at the centre. The specialist team, presently stationed at the center, can through the development of other working methods serve various facilities and families in the community and in due course even be located outside the centre. In this manner the nucleus to a comprehensive community based disability service is created. Such a programme, starting as a limited project, is one way of providing experience and knowledge for the further development of services in Jordan.
Alternative services are established
Following the surveys in which the needs of the children and adults, and the character of their local communities were identified, it was found that a considerable number of pre-school and young children attending the special school came from the Baqa area of Amman. It was also a fact that some teachers from the Sweileh Center were already very familiar with that community and had a significant role to play in the development of other services for persons with a disability in that area.
A new community center had recently been opened, providing services for various groups of persons in need of support, including those with other forms of disability, for example a school group for deaf children. Living in this area, which is located some distance from Sweileh, had previously meant considerable travelling time and a transport problem for those attending the center. Following discussions with the local committee for this community, and the community center in particular, and in agreement with the families of those concerned, it was possible from the start of the autumn term of 1997 to transfer two school classes to the community center and provide them with a corresponding daily activity there. The groups included a total of 15 children, 2 teachers from the center moving together with the children. For the teachers the transfer also meant a closer proximity between their home and place of work. Support to this initial group is still provided by the various specialist staff from the center and close contact is maintained between the project group from Sweileh Center and the management at the community center.
A similar group of 12 children has, in March 1998, begun in the Wehdat area of Amman. 7 of the children in that group already attended the center whereas another 5 were children previously on a waiting list for admittance to Sweileh. In this case the group has been integrated into an existing pre-school, a day-care service for other children without disability and a small group of children with deafness.
The transfer of these 12 children to this facility has involved an extension and renovation of the existing premises, which is seen as a general improvement of the conditions for all children attending the center. In both these cases the new service is located to districts of Amman defined as camps, the population being mainly Palestinian refugees.
The local committees of these camps are the partners with whom IM/SOIR has made the agreement for cooperation in the running of the service, while a representative for the handicap programme of UNRWA (United Nations Relief and Works Agency) has also participated in the negotiations and in taking responsibility for the running of the new service. Also for this group support is provided from the Sweileh Center.
A third service has also been started during the spring of 1998, for adults who previously attended either the vocational school or the sheltered workshop at Sweileh Center. The initiative to this project came from a voluntary organisation called the "Al-Salam Club for the Handi-capped" this being primarily a social club for persons with various disabilities, providing premises for both recreational and social activities. A group of 10 young people now attend the center which is also located in closer proximity to their home community. Seven of those participating, previously attended the Sweileh Center and are now continuing with the same vocational activities but in a new setting.
For several of these persons this development has led to a greater degree of independence as they now can travel to and from their daily activity on their own, with ordinary public transport. The other 3 persons in the group come from the vicinity and have previously not had access to any form of daily activity. The groupīs activities are supported by volunteer workers who themselves, because of a handicap, often physical, attend the center and by some other volunteers who have been recruited locally.
In the agreement met between IM/SOIR and the Al-Salam Club the relationship between the two partners is regulated in the same manner as with the two community projects. In addition to agreement regarding the overall objectives the financial and administrative roles are regulated, as is the period for the cooperation between the partners. The supportive role of IM/SOIR is also specified and in the case of the Al-Salam Club the activities at the club are supervised regularly by staff from Sweileh Center who participate on a part-time basis.
In addition to support from staff at the center, IM/SOIR has, for a two-year period beginning March 1998, appointed a coordinator whose task is to provide support and coordination of the work being carried out within all the newly started projects. This appointment is made within the framework of the Sweileh Integration Project.
From these three examples of alternative services, established within the first year of the implementation of the project, it has been shown how change can take place and alternatives can be developed. They may differ in character and formation but each, in their specific way contributes to the common objective of providing adequate personal support, within the context of the personīs own culture and local environment.
The society in which these services are now being developed has changed dramatically since IM/SOIR came to Amman 30 years ago. But there are still children and persons with intellectual disability in need of support and this needs to be provided in a manner which is consistent with present conditions.
The Integration Project as it is being carried out shows that IM/SOIR still has a role to play in Jordanian society. Taking the initiative to hold an international seminar is another way of contributing to the further development of modern services required by those who are dependent on support from others in order to live a good life.
CHANGING DISABILITY SERVICES IN A CHANGING SOCIETY
The questions of new policies, objectives, and the need for new working methods relevant to the needs of present day Jordanian society, have been central to the discussions of IM/SOIR during this period of change. Finding a relevant way forward has been seen as a major challenge for IM/SOIR. One way of meeting this challenge has been to arrange an international seminar at which invited speakers from other countries could address these topics by sharing and discussing their knowledge and experi-ence.
It has been felt that this would not only contribute to finding a way forward but also be a good way of celebrating the fact that the work of IM/SOIR in Amman began 30 years ago. Throughout IM/SOIR:s time in Amman there has always been close cooperation with the Jordanian Ministry of Social Development, this cooperation having been strengthened further during recent years when the questions of change and development have come to the forefront. In 1997 IM/SOIR held a national workshop at which its Policy Statement was presented and discussed. The workshop was opened by the Minister of Social Development and a representative from the Ministry also participated and presented a paper on a suggested national strategy for the handicapped in Jordan. In the early discussions concerning the planning of the suggested international seminar it was therefore seen as natural that it be arranged in cooperation with the Ministry, and with the National Council of the Disabled, a body which has a central role and responsibility for these issues.
It is within this context and against the background of the 30 years of IM/SOIR involvement in Jordan that the seminar is taking place. The process of change has begun for the Swedish organisation and hopefully a new life is beginning for those receiving services through this organisation.
Ericsson, K. 1993: Development of social policy and forms of support to persons with an intellectual disability in Sweden. Uppsala: Department of Education, Uppsala University.
Ericsson, K. & Ericsson, P. 1995: Support to persons through CBR - Awareness and methods. Uppsala: Department of Education, Uppsala University.
Ericsson, P. 1997: Preparation for change. A collection of documents concerning the transition of IM/SOIR services in Amman. Lund: IM/SOIR.
Jaber, A. 1994: Questions concerning provisions for mentally retarded persons - Jordan. Amman: IM/SOIR.