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Since 1999, one of the Special Interest Research Groups within the International Association for the Scientific Study of Intellectual Disabilities (IASSID) has been on profound multiple disabilities (PMD). This group has stimulated a world‐wide discussion on education and support for such individuals. However, it is evident that there is some disagreement about who is included in this category. There has also been a debate about the applicability of various policy changes for people with PMD. A third topic of discussion has been the need for more research related to this target group and the related research priorities. This paper profiles and discusses these questions.

The Netherlands is a country where much is regulated, and several departments have made rules, regulations, memoranda and even laws related to people with intellectual disabilities. Large organisations that offer different forms of support dominate the system of care and support. The policy on care for people with intellectual disabilities has, generally speaking, developed away from segregation and towards integration and inclusion. Changes have led to improvement for people with mild and moderate disabilities, although the process is slow. At the same time, the situation for people with profound and multiple disabilities has deteriorated. For a real change in the support system, client‐held budgets are believed to be of primary importance. However, this is still a slow development. This article describes the current organisation of care and support.

Quality of life and quality of care have become dominant themes in planning and evaluating services for persons with learning disabilities. There are, however, few conceptual models and assessment instruments that are geared to people with profound and multiple learning disabilities. This article presents an ongoing research project aimed at developing and implementing a valid and reliable procedure for evaluating the quality of life of people with profound and multiple learning disabilities in several European countries. This objective will be realised in three subsequent stages, each of which is divided into several steps. The research project presented has the potential to develop theory as well as good practice in the care of people with profound and multiple learning disabilities.