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“Intellectual developmental disorders”: reflections on the international consensus document for redefining “mental retardation-intellectual disability” in ICD-11

Marco O. Bertelli (CREA, Research and Clinical Centre, San Sebastiano Foundation, Florence, Italy AND EAMHID, European Association for Mental Health in Intellectual Disability, Florence, Italy)
Kerim Munir (Developmental Medicine Center, Boston Children’s Hospital and Harvard Medical School, Boston, Massachusetts, USA)
James Harris (School of Medicine, The Johns Hopkins University, Bloomberg School of Public Health, Baltimore, Maryland. USA)
Luis Salvador-Carulla (Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, Sydney, Australia AND Mental Health Policy Unit, Brain and Mind Institute, Faculty of Health Sciences, University of Sydney, Sydney, Australia)

Advances in Mental Health and Intellectual Disabilities

ISSN: 2044-1282

Article publication date: 4 January 2016

767

Abstract

Purpose

The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization’s (WHO’s) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11.

Design/methodology/approach

A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences.

Findings

The WG recommended a synonym set (“synset”) ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as “a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills”. The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features.

Originality/value

Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes its clinical as well as social, educational and policy utilities. The single construct incorporates IDD as a clinical meta-syndrome, and ID as its functioning and disability counterpart. IDD and ID are not synonymous or mirror concepts as they have different scientific, social and policy applications. New diagnostic criteria for IDD should be based on a developmental approach, which accounts for the complex causal factors known to impact the acquisition of specific cognitive abilities and adaptive behaviours. The paper focuses on a new clinical framework for the diagnosis of IDD that also includes and complements the existing social, educational and policy components inherent in ID.

Keywords

Acknowledgements

Authors want to thank Annamaria Bianco, Elisa Rondini and Michele Rossi for the support in the check of text integrations and in literature revision.Coordination of WG activities has been partially funded by Fundació Villablanca (Grup Pere Mata, Reus, Spain). Rapporteurs involved in the meetings described in this report were Carolyn Walsh (Watford meeting), assisted by Kiran Jeenkeri and Rick Mukherjee, Rafael Martínez-Leal (Geneva and Troina meetings), assisted by Nancy Liu and Winnie Chow, and Leila Vaez-Azizi. The participation of Carolyn Walsh and Leila Vaez-Azizi was funded by NIMH/NIH R25 MH071286 thanks to the mediation of Dr Kerim Munir, who is the current chair of the WPA-SPID. The Watford meeting was co-sponsored by Learning Disability Directorate, CNWL NHS Foundation Trust and the Division of Neurosciences and Mental Health, Imperial College London, with additional support from WHO. The group is especially grateful to Sherva Cooray and Peter Tyrer for their organization of the Watford conference (UK) in 2009.

Citation

Bertelli, M.O., Munir, K., Harris, J. and Salvador-Carulla, L. (2016), "“Intellectual developmental disorders”: reflections on the international consensus document for redefining “mental retardation-intellectual disability” in ICD-11", Advances in Mental Health and Intellectual Disabilities, Vol. 10 No. 1, pp. 36-58. https://doi.org/10.1108/AMHID-10-2015-0050

Publisher

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Emerald Group Publishing Limited

Copyright © 2016, Emerald Group Publishing Limited

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