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Article
Publication date: 2 October 2017

Giuliana Galli Carminati, Federico Carminati, Rachel Lehotkay, Erica Nora Lorincz, Viviane Subirade-Jacopit, Elisa Rondini and Marco O. Bertelli

The purpose of this paper is to evaluate the relationship between some main characteristics of different living arrangements and the quality of life (QoL) of their users with…

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Abstract

Purpose

The purpose of this paper is to evaluate the relationship between some main characteristics of different living arrangements and the quality of life (QoL) of their users with severe intellectual disability and low-functioning autism spectrum disorders.

Design/methodology/approach

Study participants were assessed for ASD severity through the Childhood Autism Rating Scale or the Vineland Adaptive Behavior Scales (VABS): for behavioral problems with the aberrant behavior checklist (ABC); for perception of efficacy and satisfaction with care, through an adapted Visual Analogue Scale; and for QoL with the QoL inventory in residential environments (validated in French as Inventaire de la Qualité de Vie en Milieu Résidentiel). Because the goal was to define a “residential profile (RP),” the authors evaluated each participating residence with the Working Methods Scale and the questionnaire on residential parameters.

Findings

The RP allowed for the classification of the residences into three clusters. The authors found no clear relationship between QoL and the RP clusters, but the authors found the RP clusters to be significantly correlated with ABC factors F1 (irritability, agitation, crying) and F2 (lethargy, social withdrawal), and VABS scores for living, socialization, and motor skills.

Originality/value

RPs were more strongly correlated with ABC items and the ability to cope with everyday life than with QoL. The authors hypothesize that RP is correlated with both aberrant behavior and the autonomy of residents and that QoL remains relatively stable. Therefore, RP is correlated with the status of the residents; however, this appears not to be correlated with their QoL.

Details

Advances in Autism, vol. 3 no. 4
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 4 January 2016

Marco O. Bertelli, Kerim Munir, James Harris and Luis Salvador-Carulla

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…

833

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.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 10 no. 1
Type: Research Article
ISSN: 2044-1282

Keywords

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