The education of children with severe multiple disabilities represents a significant challenge in inclusive education across many countries (cf. Agran et al., 2020; Kleinert, 2020; Cologon, 2022). Despite the UN Convention on the Rights of People with Disabilities, these children are often educated separately. The general school system frequently faces various obstacles, prompting Slee's question, "Who is in and who is out?" (Slee, 2013, 905).
While inclusive education is a central goal of Swedish school legislation, several pupils are outside the general education system. Currently, approximately 0.5 percent of all Swedish children attend compulsory school for pupils with severe intellectual disabilities. They follow a separate curriculum covering five areas: aesthetics, communication, physical coordination, everyday activities, and perception of reality. Many of these children rely on comprehensive aids, particularly in communication and mobility. Nursing assistance and care are essential in this context, often with a perceived tension in their relationship to curricular content. Overcoming the dichotomy between care and education is crucial in this regard (Östlund, 2015). The existence of different professions in educational practice must also be considered, such as special education teachers and teaching assistants in the classroom, the latter characterized by an intermediate position between the teacher and the pupils (Östlund et al., 2021). Additionally, the children are supported by habilitation and therapeutic professionals such as occupational and speech therapists.
The purpose of the presented project is to ensure the right to education for students with severe intellectual disabilities, often combined with neurodevelopmental and physical disabilities. The goal is to enhance students' opportunities for education, personality development, participation, and autonomy. The overarching research question is how the various professional groups involved can develop collaboration that benefits the students' education. This question has not been addressed in a Swedish context before, and the project may also provide new impulses for collaboration regarding other target groups in education, mainly within Sweden. Given the focus on the specific target group of children with severe intellectual disabilities, this research is also relevant to an international audience, highlighting the need for collaboration in an interdisciplinary educational context.
The study's theoretical foundation is based on a collaboration model that integrates horizontal and vertical forms of cooperation (Axelsson & Bihari Axelsson, 2013). All forms of collaboration occur within a social context where various domains interact and mutually influence one another. This can be elucidated through Bronfenbrenner's (1979) ecological approach, where the individual – in our case, the pupil – is placed at the center. Surrounding the pupil is a microsystem comprising, among other elements, family, and school, which, in turn, interacts within a mesosystem and is connected to a broader exosystem (social services, legislation, etc.) and an overarching macrosystem (attitudes, culture, etc.). This theoretical approach can be correlated with neo-institutional perspectives involving the four analysis levels of the political domain, professional domain, administrative domain, and the users' domain (Danermark & Kullberg, 1999). In our research, a clear understanding of the collaborative nature and collaboration factors and integration of systems-theoretical and neo-institutional perspectives contribute to a deeper understanding of the processes in education. These theoretical approaches assist in comprehending the interaction among various professionals and their relationship with pupils.
Methodology, Methods, Research Instruments or Sources Used: The action research-inspired project and its methods are approved by the Swedish Ethical Review Authority. The ongoing research involves two schools in one municipality and is conducted across four phases, currently transitioning from phase 2 to 3. In phase 1, data was collected from practice to serve as a mapping for planning and identifying areas of development in the operation. Phase 2 involved planning interventions in consultation with stakeholders to enhance teaching practices. Phase 3 includes the implementation and documentation of the plan and intervention. The analysis and documentation of the change process take place in phase 4, with feedback provided to participants. The accumulated documentation serves as the foundation for ongoing collegial discussions and reflections throughout the process, and it will also be integrated into both schools’ systematic quality work.
In phase 1 of the project, three methods were employed: structured video observations, semi-structured interviews, and focus group interviews (Bryman, 2016). The data was collected by both researchers and students working on advanced-level theses, establishing a connection between research and education.
1. Structured video observations: This method aims to map pupils' instructional time, time spent on their care needs and on physiotherapy. Video observations are selected based on the complexity of the instruction, the effort to avoid influencing the proceedings through observation, and the possibility of using the recorded material as part of the action research process.
2. Semi-structured interviews: This method, conducted with pupils' caregivers and professionals from habilitation services, aims to provide interviewees with the opportunity to share their thoughts and perspectives on collaboration. The analysis involved coding themes raised by the interviewees.
3. Focus group interviews: These interviews were conducted with educators and teaching assistants, focusing on the shared meaning construction of the interviewed individuals who collaborate daily in the work team. The analysis also involves coding of themes.
Conclusions, Expected Outcomes or Findings: The findings are based on the diverse empirical data collection methods outlined above. Given the ongoing nature of the project presented here, these outcomes should be regarded as interim steps toward a more comprehensive reporting of the results. On both the vertical and horizontal levels, factors that are either supportive or hindering were identified. Supportive factors included clear task distribution and the mutual complementation of competencies among professionals with diverse skills. Educational professionals highly positively evaluate the provision of adapted tools by habilitation staff. On the other hand, hindering factors include unclearly expressed expectations and everyday events that disrupt the learning process. These obstacles include interruptions due to treatments deemed unnecessary in the school routine (e.g., school dentist), time-consuming room changes, and unreliable student transportation. While these hindrances are attributed to the microsystem, other challenges lie in the meso- and partially in the exosystem, such as staffing shortages and the absence of training opportunities. On the macrosystem, hindering attitudes become obvious, in particular varying perspectives on educational needs. From a neo-institutional viewpoint, the results primarily touch upon the professional and users' domains, but issues in the political and administrative domains are also evident. The limitations of this research and development project pertain to the limited empirical material based on the schooling of children with severe intellectual disabilities in one municipality. Simultaneously, it is assumed that in the further course of the project, ways will be developed to address the outlined challenges. The preliminary results extend previous Swedish research (Östlund, 2015; Östlund et al., 2021). At the same time, these first results are encouraging and indicate paths on how the educational processes of children in precarious life situations can be influenced in a way that strengthens their autonomy.
References:
Agran, M., Jackson, L., Kurth, J. A., Ryndak, D., Burnette, K., Jameson, M., Zagona, A., Fitzpatrick, H. & Wehmeyer, M. (2020). Why Aren’t Students with Severe Disabilities Being Placed in General Education Classrooms: Examining the Relations Among Classroom Placement, Learner Outcomes, and Other Factors. Research and Practice for Persons with Severe Disabilities, 45(1), 4-13
Axelsson, R. & Bihari Axelsson, S. (2013). Samverkan som samhällsfenomen – några centrala frågeställningar. Axelsson; R. & Bihari Axelsson, S. (eds.). Om samverkan – för utveckling av hälsa och välfärd (17-38). Lund: Studentlitteratur
Bradbury, H. (ed.) (2015). The SAGE handbook of action research (Third edition) Los Angeles, Calif.: SAGE
Bronfenbrenner, U. (1979). The ecology of human development: experiments by nature and design. Cambridge, Mass.: Harvard University Press
Bryman, A. (2016). Social research methods. (Fifth edition). Oxford: Oxford University Press.
Cologon, K. (2022). Is inclusive education really for everyone? Family stories of children and young people labelled with ‘severe and multiple’ or ‘profound’ ‘disabilities’. Research Papers in Education, 37(3), 395-417
Danermark, B. & Kullberg, C. (1999). Samverkan: välfärdsstatens nya arbetsform. Lund: Studentlitteratur
Kleinert, H. L. (2020). Students With the Most Significant Disabilities, Communicative Competence, and the Full Extent of Their Exclusion. Research and Practice for Persons with Severe Disabilities, 45(1), 34-38
Östlund, D. (2015). Students with profound and multiple disabilities in education in Sweden: teaching organisation and modes of student participation. Research and practice in intellectual and developmental disabilities, 2(2), 148-164
Östlund, D., Barow, T., Dahlberg, K. & Johansson, A. (2021). In between special needs teachers and students: Paraprofessionals work in self-contained classrooms for students with intellectual disabilities in Sweden. European Journal of Special Needs Education, 36(2), 168-182
Slee, R. (2013). How do we make inclusive education happen when exclusion is a political predisposition? International Journal of Inclusive Education, 17(8), 895-907