Living in the shadow of the future : how Flanders’ personal budget system creates temporal conflicts in disability care

Context: In 2016, Flanders transitioned to a demand-driven personal budget system for disability care, replacing direct subsidies to care facilities with cash-for-care schemes. These schemes allow users to purchase services like residential care, personal assistance or transportation. Whereas 29,000 adults currently receive a budget, 18,000 remain on waiting lists due to limited governmental resources, with half of them facing projected waits exceeding 20 years. In turn, this introduces a future-oriented temporal focus, imposing individuals to persistently plan for future care needs. This study explores how budget holders experience and navigate temporal conflicts created by the modalities of the personal budget system. Methods: The study employs an ethnographic research design which is suitable for research that dives deep into the perspectives and actions of a population subgroup. Initial data collection involved inductive analysis of 40 press releases, including news articles (n=15), opinion pieces (n=14), and testimonies/interviews (n=11). This provided a better understanding of waiting list issues from diverse perspectives and assisted with the development of interview guides for the next phase of the study. Interviews will be conducted with individuals with experience in applying for a personal budget, targeting three groups: adults with disabilities as budget holders, their relatives and professionals. We will focus on young adults who recently made the transition from high school to adult care. Observations during team meetings will complement the interviews. Data will be analysed thematically using an abductive approach in NVivo. The study is grounded in the theories of intersubjective time and the temporal cognitive-affective processing system. Results: Minors that use professional care are automatically granted a personal budget when they become adults, to ensure care continuity. For additional care needs, they need to apply for a budget increase. Subsequently, they are assigned to priority groups based on care needs, informal care network, and the discrepancy between required and available support. Priority groups encompass waiting times and create temporal conflicts as well as anticipatory behaviours. For example, think of Charlotte, a 22-year-old woman with Down syndrome. In high school, she stayed in her school’s residential care facility during the week despite her parents’ ability and willingness to care for her at night. This ensured her automatic budget allocation for adult residential care, bypassing the waiting list. While this decision safeguarded her budget for future needs, it caused temporal conflicts between Charlotte and her parents in the past and negatively impacted their well-being. Discussion: The transition to a demand-driven personal budget system in Flanders has reshaped disability care by emphasizing individual agency. However, the findings reveal systemic challenges, particularly the prolonged waiting lists affecting 18,000 individuals and their families. These delays create a complex temporal dynamic, forcing budget holders and their relatives into an ongoing future-oriented planning, often at the expense of present well-being. The temporal preoccupation provoked as such has profound implications for how care is managed, anticipated, and experienced. The formal prioritization framework leads to unwanted side effects, such as penalizing informal care and compelling decisions that contradict the principles of disability inclusion. This complex temporal dynamic generates intersubjective temporal conflicts, where systemic delays clash with immediate care needs, reducing flexibility for families and overburdening caregivers. Moreover, this way of acting contributes to inefficiencies and the misallocation of public resources, undermining the system’s overall effectiveness.