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Background

Parents with intellectual disability and their children are entitled to adapted support, but practitioners lack knowledge, have scarce access to adapted methods, and work in siloed organisations with limited resources. SUF resource centre was therefore formed, in Region Uppsala, Sweden, to support families headed by parents with intellectual disability through support to the practitioners who support the families.

Method

SUF has now existed for 20 years and, in this brief report, we describe SUF's organisation and methods: knowledge dissemination, consultations, development and implementation of adapted methods, research, and support of inter-agency cooperation.

Results

We describe selected results, including research, development projects, and an external review of SUFs' work.Conclusions

We reflect on factors that have been important in developing and maintaining adapted support. We emphasise working together with practitioners—grounded in their needs, opportunities and constraints—and to simultaneously address both parents' and children's rights and needs.