Appropriate Care and Support for People With Down Syndrome in the Netherlands

ABSTRACT The (often complex) needs experienced by people with Down syndrome are not always sufficiently answered by available care and support. This paper aims to provide insight into what appropriate care and support for people with Down syndrome in the Netherlands entails and how it could be optimised. It is the concluding paper of a larger project, which comprised a literature review, a qualitative exploration involving (caregivers of) people with Down syndrome, and a Delphi‐study among professionals and patient organisations. Thematic analysis, allowing for comparison and interpretation, was used to integrate the data from these studies. Four key topics relevant for care and support for people with Down syndrome were identified: Complexity of care and support requiring coordination; finding care and expertise; Holistic, person‐centred approach; communication (between professional and person with Down syndrome). The main conclusion of the paper is that care and support for people with Down syndrome would benefit from a model that integrates services around the specific needs of this group and in which expertise is easily found and referred to. Such a network‐like model offers directions to policy makers, health insurers, other professionals and all other stakeholders, to jointly bring the care and support system for people with Down syndrome to a higher level.