On January 13, 2026, the Independent Living Institute hosted a pivotal training session as part of its "My Life My Choice" project, focusing on the critical concept of supported decision-making. This initiative underscores the fundamental right of individuals to self-determination and explores practical ways to provide the necessary support to enable effective decision-making. The event brought together two distinguished researchers from diverse academic fields to share their insights on the nature of decision-making and strategies for its enhancement.<\/p>\n
The training session commenced with an overview of the "My Life My Choice" project, presented by its project leader, Tiina Nummi-S\u00f6dergren. She detailed how the project is actively developing and piloting innovative decision-making models, drawing inspiration from successful approaches implemented in Australia, Canada, and Norway. A core component of the project involves study circles where participants engage in discussions about who holds decision-making power in their lives and assert their inherent right to self-determination. A key experimental methodology being tested is the "decision-making group," a structured support system comprising at least five individuals \u2013 who could include personal assistants, family members, or friends \u2013 convened to assist someone requiring support in their decision-making processes.<\/p>\n
The academic discourse was enriched by the contributions of Thomas Strandberg, a Professor of Social Work at \u00d6rebro University. Professor Strandberg shared his academic journey from social worker to esteemed professor, highlighting his extensive research in rehabilitation and recovery processes following acquired brain injuries, changes in welfare services, and public trust in authorities. His work also encompasses employment-focused rehabilitation for individuals with mental or intellectual disabilities. The specific research project he presented at the training was "Parenting Young Children" (PYC), which specifically addresses decision-making support for parents with intellectual disabilities or cognitive challenges. Professor Strandberg emphasized that these parents often do not receive the adequate support they require to navigate parental responsibilities effectively.<\/p>\n
The PYC project’s evaluation methodology involves assessing parenting skills and child well-being through questionnaires and direct interviews with children. Strategies such as visual aids and daily circle meetings are employed to facilitate communication and understanding. Professor Strandberg stressed the crucial importance of parents having trust in the Social Services, the entity responsible for providing support under the Social Services Act (SoL). Preliminary findings from the PYC project indicate positive changes in parenting effectiveness and an increase in perceived parental competence. Discussions during his presentation also touched upon the formulation of goals, the balance between choice and oversight in how decisions are implemented, and the power dynamics inherent in child protection services, acknowledging that sometimes boundaries must be established to ensure the effectiveness of support interventions.<\/p>\n
Further academic perspectives were provided by Niklas Altermark, an Associate Professor of Political Science at Lund University. Dr. Altermark’s research focuses on the exercise of power over individuals with non-normative functionalities and those experiencing illness. He identified particular challenges within group homes, where ideals of self-determination and participation often fall short in practical application. Dr. Altermark highlighted a significant gap between legal entitlements and actual practices, observing that staff frequently perceive individuals with disabilities as incapable of making independent decisions. His research also delves into austerity policies and their profound impact on individuals’ daily lives and self-perception. Questions raised during his segment explored the delicate balance between autonomy and the provision of assistance, underscoring that decisions are invariably made within social contexts shaped by power dynamics, especially within residential settings like group homes.<\/p>\n
Mari Siilsalu, a legal expert within the "My Life My Choice" project, provided a clear legal definition of "supported decision-making," distinguishing it from "support for decision-making." This aligns with the concept of supported decision-making as articulated in the General Comment to Article 12 of the Convention on the Rights of Persons with Disabilities. Ms. Siilsalu argued that Sweden needs to transition away from substitute decision-making models, such as the appointment of guardians, towards formal decision-making tools that incorporate more supportive strategies. The goal of supported decision-making, she explained, is to ensure equal access to decision-making for individuals with disabilities without raising the threshold for all decision-makers. This necessitates providing appropriate support to enable individuals to make well-informed choices across various life situations, including access to information and the capacity to analyze complex information.<\/p>\n
The training session was expertly moderated by Emil Erdtman, Operations Manager at the Independent Living Institute (ILI). The day’s discussions consistently underscored the challenges and complexities involved in providing effective decision-making support to individuals with intellectual disabilities. Participants actively engaged in discussions about the necessity of adapting methods and approaches from other countries, such as Australia, to suit Swedish societal structures and welfare systems. The overarching consensus was that support must be accessible and effective. Simultaneously, the discussions acknowledged the pervasive impact of austerity measures on the Swedish welfare state and their disproportionate effects on vulnerable groups.<\/p>\n
The event served as a critical platform for knowledge exchange and strategic planning, illuminating the path forward for the "My Life My Choice" project. The insights shared by the researchers and the active participation of attendees have provided a robust foundation for the project’s ongoing work.<\/p>\n