The IDD Paradigm of Shared Citizenship: Its Operationalization, Application, Evaluation, and Shaping for the Future.

Changes in the field of intellectual and developmental disabilities (IDD) over the last 5 decades has resulted in the emergence of the shared citizenship paradigm. This paradigm is currently guiding the development of IDD-related policies and practices, and providing a framework for application, research-based inquiry, and evaluation. A shared citizenship paradigm is one that envisions, supports, and requires the engagement and full participation of people with IDD as equal, respected, valued, participatory, and contributing members of every aspect of society. The overall goals of the paradigm are to (a) further advance and focus on people with IDD as active agents in the change process, and (b) improve outcomes for people with IDD, including their access to and opportunity for shared citizenship. This article describes the paradigm's operationalization, application, evaluation, shaping for the future, and specific strategies to overcome implementation challenges.

Professional Responsibility in the Field of Intellectual and Developmental Disabilities: Its Definition, Application, and Impacts.

This article addresses the need to clearly understand professional responsibility and the critical role it plays in the lives of individuals with intellectual and developmental disabilities (IDD), in shaping professions for the better, and in enhancing the functioning of society for the benefit of all. Understanding professional responsibility is especially timely during the current transformation that is occurring in the field of IDD. To that end, the article discusses what is a profession, who is a professional, and what is professional responsibility. Using a logic model framework, the article describes the components of professional responsibility that include its building blocks such as respect for the person, professional ethics and standards, critical thinking skills, and clinical judgment; its use of nine professional practices including empowerment, evidence-based practices, individualized supports, and person-centered outcome evaluation; its outcomes in terms of mutual trust, the improved effectiveness of clinical functions, and professional accountability; and its impacts regarding individual benefit, professional integrity, and societal enhancement.

Ongoing Transformation in the Field of Intellectual and Developmental Disabilities: Taking Action for Future Progress.

There has been a significant transformation in the field of intellectual and developmental disabilities (IDD) over the last 5 decades. Although this transformation has profoundly influenced multiple stakeholders, the field is currently at a critical juncture and facing a number of social and political challenges. Given the relevance of the question, "where is the field of IDD and where do we go," the present article describes the field's transformation, and suggests future action steps to facilitate and sustain the transformation. The seven action steps discussed in the article relate to using precise terminology, incorporating a functional and holistic approach to IDD, embracing the supports model and evidence-based practices, implementing outcome evaluation, empowering individuals and families, understanding better the multidimensional properties of context, and incorporating an explicit notion of professional responsibility.

Enhancing research practices in intellectual and developmental disabilities through person-centered outcome evaluation.

BACKGROUND: Research practices in IDD need to align current values towards people with IDD, the current understanding of IDD, and best practices regarding change strategies and valued outcomes. AIMS: To describe the components to-and application of-a person-centered outcome evaluation model that meets the above criteria. METHODS AND PROCEDURES: A person-centered evaluation logic model is used to identify and describe a conceptual framework (input), a change strategy (throughput), personal outcomes (outcome), and meaningful impacts (output). OUTCOMES AND RESULTS: Specific person-centered outcomes and exemplary outcome indicators are presented for two outcome evaluation frameworks: human functioning dimensions, and the four theoretical perspectives on IDD: biomedical, psychoeducational, sociocultural, and justice. CONCLUSIONS AND IMPLICATIONS: A person-centered approach to outcome evaluation enhances research practices in IDD by identifying and assessing valued personal outcomes that align current values, understanding, and best practices; increases transparency; facilitates accountability; and expands understanding.

A balanced approach to decision-making in supporting people with IDD in extraordinarily challenging times.

A balanced approach to decision-making during challenging times is necessary in order to avoid risks that jeopardize the lives and wellbeing of people with intellectual and developmental disabilities (IDD). The COVID-19 pandemic is the recent example of a crisis that places people with IDD at risk for lopsided societal reactions and threats to them or their wellbeing. Attention to decision-making is required to safeguard hard-earned achievements, including public policies and organization practices that emphasize human and legal rights, self-advocacy, individualized supports, inclusive environments, choices, and community inclusion. We suggest maintaining a holistic approach to understanding the lives and human functioning of people with IDD, a balanced approach to accountability and performance management, an understanding of the multidimensional properties of context, and a heightened vigilance in professional responsibility. A balanced approach will strengthen the likelihood of a return to high quality services and supports to people after the crisis, reduce loss of critical progress, and enhance stability across future social, political, and financial changes and challenges.

Using a Multidimensional Model to Analyze Context and Enhance Personal Outcomes.

This article describes a multidimensional model of context that identifies, defines, and explains three key properties of context: multilevel, multifactorial, and interactive. The use of this model to drive a context-based enhancement cycle is also described. The enhancement cycle involves four steps: (a) identifying current interactions that influence personal goals and outcomes; (b) targeting the interaction that will have the highest impact on selected outcomes for the individual; (c) manipulating the contextual factors that will positively influence the interaction; and (d) evaluating the impact of the manipulated interaction on personal outcomes. The article concludes with a discussion of the implications of using a multidimensional model of context to enhance personal outcomes.

Going beyond Environment to Context: Leveraging the Power of Context to Produce Change.

This article discusses the processes and implications of going beyond environment to context. The article (a) provides an operational definition of context; (b) describes a multidimensional model of context that views context as being multilevel, multifactorial, and interactive; (c) describes how conceptual models of quality of life, human rights, and human functioning can be used in conjunction with the multidimensional model of context to identify opportunities and develop context-based change strategies that improve quality of life, human rights, and human functioning outcomes; and (d) describes a four-step approach to leveraging an understanding of context to produce change. The article concludes with a discussion of the advantages of and barriers to moving beyond environment to context.

The contemporary view of intellectual and developmental disabilities: implications for psychologists / La visión contemporánea de las discapacidades intelectuales y del desarrollo: implicaciones para psicólogos

Background: The field of intellectual and developmental disabilities (IDD) is currently experiencing a significant transformation that encompasses an integrated approach, especially regarding shared aspects such as a focus on the human and legal rights, the eligibility for services and supports, and an emphasis on individualized supports provided within inclusive community-based environments. Accompanying this transformation is the increased need of precision in both the operational definitions of IDD-related constructs, and the terminology used to describe the respective construct. Method: the specialized literature was revised, and previous works on the subject by the authors were updated. Results: This article provides psychologists with the current definition of intellectual disability, operational definitions of intellectual disability and developmental disabilities constructs and associated terminology, and the parameters of an integrated approach to disability. Conclusions: Implications for psychologists who are involved in diagnosis, classification, and planning supports for persons with intellectual or developmental disability are discussed

Antecedentes: el campo de la discapacidad intelectual y del desarrollo (DID) experimenta en la actualidad una significativa transformación que implica un enfoque integrado, especialmente en lo que se refiere a aspectos compartidos como el enfoque en los derechos humanos y legales, la elegibilidad para recibir servicios y apoyos, y el énfasis en los apoyos individualizados proporcionados en entornos comunitarios inclusivos. Esta transformación se acompaña de una creciente necesidad de precisión en cuanto las definiciones operativas de los constructos relacionados con la DID y la terminología utilizada para describir cada uno de ellos. Método: se ha revisado la literatura especializada y se han actualizado los trabajos previos de los autores sobre el tema. Resultados: este artículo proporciona a los psicólogos la definición actual de la discapacidad intelectual, las definiciones operativas de los constructos de discapacidad intelectual y discapacidades del desarrollo, así como de la terminología asociada, y los parámetros de un enfoque integrado de la discapacidad. Conclusiones: se discuten las implicaciones para los psicólogos involucrados en el diagnóstico, la clasificación y la planificación de apoyos a personas con discapacidad intelectual o del desarrollo

The contemporary view of intellectual and developmental disabilities: Implications for psychologists.

BACKGROUND: The field of intellectual and developmental disabilities (IDD) is currently experiencing a significant transformation that encompasses an integrated approach, especially regarding shared aspects such as a focus on the human and legal rights, the eligibility for services and supports, and an emphasis on individualized supports provided within inclusive community-based environments. Accompanying this transformation is the increased need of precision in both the operational definitions of IDD-related constructs, and the terminology used to describe the respective construct. METHOD: the specialized literature was revised, and previous works on the subject by the authors were updated. RESULTS: This article provides psychologists with the current definition of intellectual disability, operational definitions of intellectual disability and developmental disabilities constructs and associated terminology, and the parameters of an integrated approach to disability. CONCLUSIONS: Implications for psychologists who are involved in diagnosis, classification, and planning supports for persons with intellectual or developmental disability are discussed.

The Responsibility to Build Contexts That Enhance Human Functioning and Promote Valued Outcomes for People With Intellectual Disability: Strengthening System Responsiveness.

This article describes a model that systems can use to build contexts that enhance human functioning and promote valued outcomes for individuals with intellectual disability (ID). Our premise is that that systems have a responsibility to build contexts that enhance human functioning and promote valued outcomes for people with ID, and that this obligation can be met through the use of contextual analysis to deliberately design and implement support strategies that are responsive to identified contextual factors. The model employs a 2-step process to identify context-based independent and intervening variables and align support strategies with identified context-based influencing factors, disability policy goals, and associated outcome domains. We propose a number of indicators that can be used to assess the quality of a system's responsiveness based on their implementation of the model. Implications for research and practice are discussed.

A Holistic Theoretical Approach to Intellectual Disability: Going Beyond the Four Current Perspectives.

This article describes a holistic theoretical framework that can be used to explain intellectual disability (ID) and organize relevant information into a usable roadmap to guide understanding and application. Developing the framework involved analyzing the four current perspectives on ID and synthesizing this information into a holistic theoretical framework. Practices consistent with the framework are described, and examples are provided of how multiple stakeholders can apply the framework. The article concludes with a discussion of the advantages and implications of a holistic theoretical approach to ID.

An Integrated Approach to Disability Policy Development, Implementation, and Evaluation.

This article provides a framework for an integrated approach to disability policy development, implementation, and evaluation. The article discusses how a framework that combines systems thinking and valued outcomes can be used by coalition partners across ecological systems to implement disability policy, promote the effective use of resources, incorporate specific support strategies that advance identified disability policy goals and lead to systemic changes and enhanced personal outcomes, and focus on activities that advance a unified vision for disability policy and the attainment of personal outcomes. The article concludes with a discussion of the significant challenges and opportunities regarding an integrated approach to disability policy in a time of change.

Intellectual Disability Policy as Developed, Expressed, and Evaluated in AAIDD/The Arc Joint Statements: The Role of Organization Position Statements.

The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of joined efforts to develop, express, and evaluate disability policies. These efforts have resulted in a series of formal statements on critical issues such as education, healthcare, human rights, and criminal justice. Their joint efforts further important policy goals including providing clear strong communication about important policy values and directions, promulgating key principles of high quality supports and services, affirming best professional practices, and emphasizing personal outcomes. In addition, the joint efforts (a) affirm important aspects of organization identity; (b) enhance the organizations' abilities to assure the input of a wide variety of perspectives; (c) engage members' expanded ranges of experiences and talents; (d) multiply staff and leadership resources; (e) increase communication strength and avenues; and (f) establish processes for timely review and revision of policies as critical disability issues arise or change, and new opportunities for policy integration and advancement occur. This article describes the processes used to develop, express, and evaluate the position statements; summarizes the policy content of several joint statements; and discusses the role of these organization position statements.

The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability.

Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.

A Systematic Approach to Subgroup Classification in Intellectual Disability.

This article describes a systematic approach to subgroup classification based on a classification framework and sequential steps involved in the subgrouping process. The sequential steps are stating the purpose of the classification, identifying the classification elements, using relevant information, and using clearly stated and purposeful subgroup classification terms. This systematic approach reflects current changes in the field of intellectual disability (ID), the modern and social understanding of ID, and the multiple purposes for classification.

Using Context as an Integrative Framework to Align Policy Goals, Supports, and Outcomes in Intellectual Disability.

This article discusses how context can be used as an integrative framework to align and promote the seamless integration of disability policies, systems of supports, and personal outcomes in the field of intellectual disability. We describe how disability policy goals serve as inputs to an integrative approach to context, and personal outcomes serve as the intended outputs. We then consider contextual factors that research suggests act as independent or intervening variables and that can be targeted through support strategies to enhance personal outcomes. These independent and intervening variables act as throughputs between disability policy goals and personal outcomes. We introduce a logic model to show how disability policy goals, systems of supports, and personal outcomes can be aligned and discuss the implications of using a context-based integrative framework.

Standards to Guide the Use of Clinical Judgment in the Field of Intellectual Disability.

The purpose of this article is to discuss 10 Clinical Judgment Standards and associated best practice indicators based on current literature and an understanding of the context of clinical judgment. Throughout the article, we stress the important role that clinical judgment plays in formulating valid and precise decisions and recommendations regarding diagnosis, classification, and planning supports.

Psychometric properties of the portuguese version of the adaptive behavior scale.

The adaptive behavior construct has gained prominent attention in human services over the last several years in Portugal, and its measurement has become an integral part of the assessment of populations with intellectual disability. In Portugal, diagnosis remains exclusively based on IQ measures, although some attention recently has been given to the adaptive behavior concept. In this article, we explain the adaptation and validation process of the Portuguese version of the Adaptive Behavior Scale (PABS) on a sample of 1,875 people with and without intellectual disability. Results of the study are discussed in terms of the reliability and validity of PABS on the sample. The PABS appears to be a valid and reliable assessment of adaptive behavior in individuals in Portugal with intellectual disability.

What's at stake in the lives of people with intellectual disability? Part I: The power of naming, defining, diagnosing, classifying, and planning supports.

This article focuses on the power of naming, defining, diagnosing, classifying, and planning supports for people with intellectual disability. The article summarizes current thinking regarding these five functions, states the essential question addressed by the respective function, and provides an overview of the high stakes involved for people with intellectual disability, their families, and the field of intellectual disability.