Promoting family-school-community partnerships to foster learner-centred transition into adult life for youth with severe intellectual disability

Abstract

The aim of this study was to explore ways to promote family-school-community partnerships to improve transition outcomes for youth with severe intellectual disability in South Africa. Both sides of the proverbial coin that are instrumental in securing a quality adult life after school were viewed as vitally important: on the one hand, learner-centredness, and on the other, family-school-community partnerships. The learners’ unique challenges, required support, wishes and dreams had to take centre stage, but at the same time, a person with severe intellectual disability needs the stakeholders in the ecologies surrounding them to take hands to facilitate them to be the best young adult they can possibly be. I chose a participatory action learning and action research (PALAR) design, which is aimed at learning and change. The participants in the action learning set, a group of colleagues and parents at the school at which I teach, agreed that we needed to research, reflect on and learn about ways to improve our school’s transition planning, since it was clear that the post-school outcomes of learners with severe intellectual disability left much to be desired. We selected five learners whose challenges, needs and strengths were representative of the diverse population of the school. Our transition-related journey with these five learners was central to the research. Quality of life and Bronfenbrenner’s ecological systems theory were the two main guiding theories for the research. Since action research is cyclical and iterative in nature, the research consisted of three cycles. Each cycle endeavoured to answer one of the critical questions. In Cycle 1, we focused on addressing the following question: What are the challenges and resulting support needs of adolescents living with severe intellectual disability regarding transition to adult life? During this cycle, I conducted convergent interviews with stakeholders who already had experience related to the challenges and support needs of young adolescents with severe intellectual disability making the transition from school to adult life. This data was brought to the group, who discussed emerging points of interest. After data analysis, three themes were selected: dignity, empowerment and inclusion. Other activities that were commenced during this cycle were learner assessments and parent interviews. During the second cycle, we turned our attention to the issue of partnerships. The aim was to answer the second critical question: How can family-school-community partnerships better meet the support needs of adolescents living with severe intellectual disability before and during transition? We found that the first and most challenging barrier towards forging supportive partnerships was that there was a serious breakdown of the family-school partnership, a challenge that could render all other transition-related efforts from the school’s side fruitless. We explored the causal mechanisms that might be behind these challenges. We discovered that, for

learners eligible to be placed in employment, an after-school support gap was apparent. This gap could, in most cases, not be filled by the parents, and, due to time and human resource constraints, the school could not fill it either. We concluded that there was a dire need for job coaches, who could render this kind of support. We encountered several challenges in the public service domain, where we found that there was a disconnect in service delivery since each government department had a different service delivery focus area, and collaborative support was a huge challenge. We found that the creation of community-based support nets around families of young people with severe intellectual disability, in the spirit of Ubuntu, would be ideal for inclusive support. However, community bias remains an ever-present threat to such efforts. While all these discussions around partnerships and support were ongoing, we worked on transition plans for the five learners we had identified for the practical leg of the study. Two of the learners were placed in employment, with job coaching, with good results. The work with the other learners was held up by wave after wave of the Coronavirus pandemic. However, we managed to do some transition preparation, more specifically skills building, with two of the learners (car washing and baking). The fifth learner, a girl with multiple challenges (with cerebral palsy, who was non-verbal and with severe intellectual disability) took part in a project where she painted and sold key holders. She was allowed to take the money home and go shopping; something she had never done, since her parents always kept her indoors. This was a life-changing experience for her, her parents and some school staff members, since all stakeholders tended to infantilise her and were inclined to under-estimate her abilities. In Cycle 3, the cases of the five learners were then comprehensively analysed and discussed by the action learning set to get to an answer, or answers, to the third critical question: How can the knowledge created by this team enhance sustainable learner-centred transition planning for learners with severe intellectual disability? We found that individualised, learner-centred transition plans were instrumental in reaching quality-of-life goals, such as improved employability and home living skills, a positive self-concept, and better community integration and social relationships. The team also utilised the data of the study to create a transition process model. We identified the unique role that each partner needs to play in the transition process and discussed how change in the minds of stakeholders could be brought about to make transition efforts more sustainable.