"Others Decide for Us": Recommendations became restrictions in services for people with intellectual disability in Sweden

Background Research on COVID-19 and people with intellectual disability has largely relied on proxy reports and early pandemic data, with limited focus on everyday policy implementation. In Sweden, where pandemic-related responses were based on recommendations rather than lockdowns, this raises questions about how participation was affected in practice. This study examined how people with intellectual disability receiving social services in Sweden experienced participation and involvement in everyday life during the COVID-19 pandemic, focusing on how national recommendations were implemented in practice. Method Five focus groups with 24 adults with mild to moderate intellectual disability were conducted in late 2022. Data were analysed using reflexive thematic analysis. Results Participants described difficulties accessing understandable information and increased reliance on staff for interpreting recommendations. At the same time, they demonstrated knowledge of the virus and described actively following protective measures. Despite this, national recommendations were frequently translated by staff and managers into binding rules within housing and daily activities, limiting opportunities to influence decisions in everyday life. This resulted in experienced participation restrictions, including constraints on work, social contact, and use of shared spaces. Several participants also described ongoing consequences of these practices beyond the pandemic period. Conclusions The findings show that, even without lockdowns, local implementation of recommendations can create de facto restrictions in everyday life, despite participants’ ability to understand and follow public health measures. The study underscores how translating policy into practice within social services can affect participation in ways not visible at the policy level.