Future planning and social policy expectations of families with children with down syndrome

What are the future care planning and social policy expectations of mothers who have been caring for their children with intellectual disabilities throughout their lives, in cases where they cannot continue to care for their children? This research question guided the current study, which specifically focused on Down syndrome in the context of intellectual disabilities. Using a qualitative design, data were analyzed thematically based on semi-structured, in-depth interviews with 16 mothers of children with Down syndrome living in Istanbul. As a result of the current study, financial and housing issues come to the fore in mothers' future care planning and social policy expectations for their children with Down syndrome. It is seen that mothers tend to leave as much cash and/or cash-convertible resources as possible for their children's future. In parallel, mothers' social policy expectations included regular cash transfers to ensure a decent standard of living for their children. Regarding residential and housing issues, mothers have a consensus that they want an arrangement where their children's current routines are least affected. Mothers also emphasized a preference for care to continue in the child's familiar home environment, ideally supported by known caregivers. Institutional care was considered only when necessary and as a last option. The findings indicate that mothers question the adequacy and scope of current social policies regarding future care. The study emphasizes the need for social policies that include individualized care plans. These expectations were discussed in relation to current practices in Turkey.