In this context, the National Solidarity Fund for Autonomy (CNSA) has commissioned Inserm to conduct a collective expert review to provide the latest scientific expertise from international and multidisciplinary research on intellectual disabilities. The collective expertise approach has enabled a review of scientific data in the following areas: definition and epidemiology; assessment of individual skills and deficiencies; as well as care and support during key stages in life.
A multidisciplinary group of 12 experts, researchers and clinicians was formed and accounts for the complementary nature of the represented scientific disciplines. Inserm has established a literary collection with 2,500 references that have been critically analysed by a group of experts.
Among the various expert findings, the assessment of skills and limitations of individuals with ID, as well as support requirements, often remain incomplete. Furthermore, among the recommendations from this study, authors advocate an in-depth review regarding the development of resource centres for intellectual disability. These structures would bring together needed expertise in the form of multidisciplinary teams (general physicians, paediatricians, geriatric specialists, pain specialists, neurologists, psychiatrists, psychologists, nurses, special needs teachers, speech therapists, social workers, etc.) to ensure a multidimensional assessment of the limitations and abilities of the individual’s activity, assess his/her needs in order to organise the required support, and provide coordinated and practical assistance that could contribute to the life course of an individual with intellectual disabilities and his/her family.
Recommendations for actions:
 The literature today recognises the definition of adaptive behaviour as a complex concept based on three concepts: conceptual adaptive skills (language, reading, mathematical concepts, time, etc.), social skills (interpersonal skills, social responsibility, etc.) and practical skills (daily activities, occupational skills, etc.).
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Wil Buntinx, healthcare psychology, GovernorKremers Center for people with intellectual disabilities, Maastricht University, Netherlands
Christine Cans, epidemiology, childhood disabilities registry and perinatal observatory RHEOP, Grenoble
Laurence Colleaux, Inserm UMR 1163, laboratory of molecular and pathophysiological bases of early cognitive disorders, Paris Descartes-Sorbonne Paris Cité University, Imagine Institute, Necker Hospital for Sick Children, Paris
Yannick Courbois, child and adolescent psychology, disability psychology, Psychology Training and Research Unit, Psitec Laboratory, EA 4072, Lille
Martin Debbané, clinical developmental psychology unit, Faculty of Psychology and Educational Sciences, University of Geneva, Switzerland
Vincent des Portes, neuropaediatrics, National Reference Centre for “Rare Cases of Intellectual Disability”, Institute of Cognitive Sciences, Laboratory L2C2, CNRS UMR 5304, Lyon
Jean-Jacques Detraux, educational psychology, Department of Psychology: Cognition and Behaviour, University of Liège and Study Centre and Specialised Education Training, University of Brussels (ULB-CEFES), Belgium
Bruno Facon, language team, Lille University, Lille University Hospital, UMR 9193 – SCALab – Cognitive and Affective Sciences, F-59000 Lille, France.
Marie-Claire Haelewyck, educational psychology, Clinical Remediation Department, Faculty of Psychology and Educational Sciences, Mons University, Belgium
Delphine Heron, medical genetics, Reference Centre for “Rare Cases of Intellectual Disability”, Pitié-Salpêtrière Hospital Group, Pierre and Marie Curie University, UMR-S 1127 Paris
Geneviève Petitpierre, specialised education, Department of Specialised Education, Faculty of Arts, Fribourg University, Switzerland.
Eric Plaisance, sociology, Social Relations Research Centre, CNRS UMR 8070, Paris-Descartes University, Paris