The intellectual and developmental disability shared citizenship paradigm: its cross-cultural status, implementation and confirmation.

BACKGROUND: Dramatic changes in societal approaches to people with intellectual and developmental disabilities (IDD), and the services and supports they receive are reflected in a new paradigm that we name the shared citizenship paradigm. The shared citizenship paradigm (1) incorporates an updated and contemporary set of values and beliefs about people with IDD and their right to participate fully in all aspects of life and society; (2) is characterised by a holistic approach to IDD, a contextual model of human functioning, disability rights principles and person-centred implementation strategies; (3) incorporates the exponential growth in knowledge about the causes and characteristics of IDD and factors influencing the elimination of barriers to positive outcomes for people with IDD; and (4) is reflected in international covenants, such as the United Nations Convention on the Rights of People with Disabilities (UNCRPD), and in international policy goals and associated personal outcome domains. METHOD: We conducted a preliminary survey on the cross-cultural status of the shared citizenship paradigm with a small purposefully sampled international group of professionals known to have extensive knowledge, experience, and publications regarding their country's current IDD-related policies and practices. RESULTS: One or more paradigm components were evident to a moderate degree in the respondents' countries, and the paradigm is being used to provide individualised services and supports, to guide organisation transformation and systems change, and, to a lesser degree, to frame evidence-based inquiry. CONCLUSIONS: Core components of the shared citizenship paradigm are present internationally. To further enhance implementation and confirmation of the paradigm, we propose implementation strategies and confirmation techniques.

Developing behavioural indicators for intellectual functioning and adaptive behaviour for ICD-11 disorders of intellectual development.

BACKGROUND: We present the work conducted to arrive at deriving behavioural indicators that could be used to guide clinical judgement in determining the presence and severity of deficits in intellectual functioning and adaptive behaviour for the purpose of making a diagnosis of disorders of intellectual development. METHODS: An interdisciplinary expert panel provided guidance in developing behavioural indicators for intellectual functioning. A national dataset of adaptive behaviour on a sample of individuals with a diagnosis of intellectual disability was used to develop the behavioural indicators for the adaptive behaviour. The adaptive behaviour data were analysed using a cluster analysis procedure to define the different severity groupings by chronological age groups. RESULTS: We present a series of tables containing behavioural indicators across the lifespan for intellectual functioning and adaptive behaviour, including conceptual, social and practical skills. These tables of behavioural indicators have been proposed for use in the clinical version of the 11th revision of the International Classification of Diseases and Related Health Problems (ICD-11) to be published by the World Health Organization. CONCLUSIONS: The proposed behavioural indicators for disorders of ID described in the present article and to be included in the ICD-11 Clinical Descriptions and Diagnostic Guidelines are put forth to assist professionals in making an informed clinical decision regarding an individual's level of intellectual functioning and adaptive behaviour for the purpose of making a determination about the presence and severity of disorders of ID.

Eliciting perceptions of satisfaction with services and supports from persons with intellectual disability and developmental disabilities: a review of the literature.

BACKGROUND: Assessing the perceptions of individuals with intellectual disability (ID) and developmental disabilities (DD) is an essential part of evaluating and planning services and an important component of respect for self-direction and autonomy. It can be difficult, however, to assess satisfaction in such a way that individuals with disabilities' actual perceptions of satisfaction are accurately represented because of intellectual and communication difficulties they may have, the restricted range and nature of service systems, and the limitations of strategies used by some researchers. METHOD: The purpose of this literature review was to systematically examine research studies designed to solicit personal satisfaction information from individuals with ID and DD. We reviewed 29 studies that met inclusion criteria to determine (1) who were participants in the studies, (2) what processes researchers used to obtain opinions and perspectives of persons with ID and DD, and (3) how researchers ensured the credibility, accuracy and voluntariness of participants' responses. RESULTS: Findings revealed that most of the research participants had ID with higher IQs and limited needs for supports. Researchers utilised a variety of processes to elicit perceptions of satisfaction. Most studies employed individual interviews; researchers addressed comprehensibility of questions in a number of ways (e.g. use of visuals, adjusting wording of questions, providing clear examples). Few studies reported training interviewers or taking into account participants' primary language or cultural background. No studies reported educating participants about how to understand the satisfaction information data or how to use it in advocating for more appropriate supports. CONCLUSIONS: Assessing the satisfaction with supports and services of individuals with ID and DD is complex particularly for persons with extensive support needs. Continued research using varied conceptual frameworks and new technologies is needed. Also helpful will be teaching persons with disabilities about the assessment process and how to use its results.

Defining and applying a functionality approach to intellectual disability.

BACKGROUND: The current functional models of disability do not adequately incorporate significant changes of the last three decades in our understanding of human functioning, and how the human functioning construct can be applied to clinical functions, professional practices and outcomes evaluation. METHODS: The authors synthesise current literature on human functioning dimensions, systems of supports and approaches to outcomes evaluation for persons with intellectual disability (ID), and propose a functionality approach that encompasses a systems perspective towards understanding human functioning in ID. The approach includes human functioning dimensions, interactive systems of supports and human functioning outcomes. RESULTS: Based on this functionality approach the authors: (1) describe how such an approach can be applied to clinical functions related to defining ID, assessment, classification, supports planning and outcomes evaluation; and (2) discuss the impact of a functionality approach on professional practices in the field of ID. CONCLUSIONS: A functionality approach can increase focus on the integrative nature of human functioning, provide unified language, align clinical functions and encourage evidence-based practices. The approach incorporates a holistic view of human beings and their lives, and can positively affect supports provision and evaluation.

Naming, defining, and classifying in mental retardation.

Recent discussions about changing the term mental retardation to a different term may be considered in the broader framework of three distinct but related processes: naming (terminology), defining, and classifying. The three processes are analyzed according to their purposes and functions: In naming, a term is assigned; in defining, the term is explained; and in classifying, the group is divided into subgroups according to stated principles. The current status of each process is described, especially as represented in the 1992 AAMR manual, Mental Retardation: Definition, Classification, and Systems of Supports. We suggest three sets of guiding questions that may help evaluate proposed changes in naming, defining, or classifying.

The changing conception of mental retardation: implications for the field.

The 1992 American Association on Mental Retardation's (AAMR) definition and classification of mental retardation is different from the previous classification system in that: (a) a single diagnostic code of mental retardation is used if the person meets the three criteria of age of onset (18 or under), significantly subaverage abilities in intellectual functioning, and related limitations in two or more adaptive skills areas; (b) the person's strengths and weaknesses are described in reference to four dimensions: intellectual functioning and adaptive skills; psychological and emotional well-being; health, physical well-being, and etiology; and life activity environments; and (c) a profile of needed supports is developed across the four dimensions. In this article we discussed six major implications of the 1992 System for the field of mental retardation.

Consent screening interview for community residential placement: report on the initial pilot study data.

A preliminary investigation of the reliability and validity of the Consent Screening Interview is described. The instrument was designed to assess the ability of adults with developmental disabilities to give direct consent for community residential placement. Our three objectives were to: (a) establish content and construct validity through administration and expert evaluation, (b) establish preliminary baseline scoring criteria; and (c) make any needed revisions based on expert appraisal and administration of the instrument to a target population. Initial results indicated that this instrument differentiated between those subjects considered competent to give consent and those whose ability to give consent was questionable.