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• W3217754216 abstract "The American Association on Intellectual and Developmental Disabilities (AAIDD) recently published the 12th edition of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports. Schalock, Luckasson, and Tassé (2021) have built on the long history of terminology and classification manuals published by AAIDD, advancing the focus that was initiated with the 9th edition of the manual on the supports paradigm (Luckasson et al., 1992) and introducing an “integrative approach to intellectual disability (ID).” As stated by the authors, this integrative approach recognizes that:The integrative approach to ID and the ongoing development of the supports paradigm articulated in the 12th edition provides critically needed guidance for research, policy, and practice in the intellectual and developmental disabilities field. Readers of Inclusion will be acutely aware of the need for transformation in the systems that support people with intellectual disability to enable the actualization of the supports paradigm and an integrative approach to intellectual disability.To advance these outcomes, the authors of the 12th edition have taken specific steps. For example, the 11th edition separated the terminology and classification manual (Schalock et al., 2010) and user's guide (Schalock et al., 2012), with the user's guide published almost two years later. The 12th edition takes a different approach, recognizing the need for information that is immediately and directly relevant to actualizing the supports paradigm. It is described by the authors as a “user-friendly manual that combines the theoretical and conceptual thoroughness of a manual with the practical aspects of a user's guide” (p. 4). This approach provides more immediate and compelling guidance for all stakeholders involved in defining, diagnosing, classifying, and planning systems of supports. Perhaps the most useful aspect of this approach for readers of Inclusion will be the inclusion of practice guidelines for each of the main chapters in the text, that “frame best practices, increase understanding, and facilitate precise, valid, and effective decisions, recommendations, and actions” (p. 4).The organization of the manual and its title also highlight key implications of the ongoing changes in the field. For example, the title of the 12th edition is Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports. The previous two editions (Luckasson et al., 2002; Schalock et al., 2010) only included Definition, Classification, and Systems of Supports in the subtitle. The identification of diagnosis as separate in the title reflects the important and ongoing recognition that diagnosing intellectual disability, while critical for—as noted by the authors—“establishing the presence of the disability in an individual, but also [making] the person eligible (or ineligible) for services, supports, benefits, and legal protections” (p. 24), is not an end in itself but instead a means to advance the identification of needed supports to advance the life functioning of the person with ID. The authors explicitly call attention to this issue in one of the five assumptions that they identify as “essential to the application” of the definition of intellectual disability, stating: “An important purpose of describing limitation is to develop a profile of needed supports (Assumption 4, p. 1).Although there has been consistency of the operational definition used to diagnosis intellectual disability over time that has not substantively changed in the 12th edition, there have been changes because of the supports paradigm and the emergence of the integrative approach to intellectual disability. These changes include an increased recognition that diagnosis occurs in a broader context, that classification is an “optional postdiagnosis organizing scheme” (p. 45), and that the application of the definition of ID and thus the act of diagnosing intellectual disability and describing limitations in functioning should be done in service to developing “a profile of needed supports.” This is highlighted by another assumption the authors identify as essential to the application of the definition of intellectual disability that “With appropriate personalized supports over a sustained period of time, the life functioning of the person with ID generally will improve” (Assumption 5, p. 1). By adopting an integrative approach to intellectual disability, which is more fully described in the last chapter of the manual, the manual also reflects the growing recognition that implementing the supports paradigm requires understanding of multiple theoretical perspectives and contextual factors that operate and interact at the micro-, meso-, and macrosystems level. These contextual factors influence the life functioning and personal well-being of people with intellectual disability. This approach will likely resonate with readers of Inclusion, and aligns with the stated mission of the journal to “further research, policy, and practice related to promoting the full inclusion of people with intellectual and developmental disabilities in all aspects and phases of life,” advancing research and evaluation that actualizes the intended outcomes of the supports paradigm and an integrated approach to intellectual disability, namely work that has “direct implications for building systems of supports that enhance inclusion and promote valued outcomes.”One additional change that readers will note, in relation to defining and diagnosing, is a change in the operational definition of the developmental period. In the 12th edition, the developmental period is defined operationally as “before the individual attains age 22” (p. 1). Age of onset has been the third criterion (in addition to limitations in intellectual functioning and adaptive behavior) in all modern terminology and classification systems for intellectual disability; the last two editions of the AAIDD terminology and classification manuals defined the developmental period through age 18 (Luckasson et al., 2002; Schalock et al., 2010). However, this change is consistent with emerging developmental and brain science as well as with how the developmental period is defined across various laws and frameworks for understanding development. The authors highlight that this change is consistent with the Developmental Disabilities Assistance and Bill of Rights Act Amendments of 2000 and standards for the diagnosis of intellectual disability established by the Social Security Administration. Further, it aligns with other legislation that may be of interest to readers of Inclusion, such as the Individuals with Disabilities Education Act, which provides for educational services and supports for students with disabilities through the age of 21. As the authors note, it is unlikely that this will lead to any significant impacts on prevalence rates, because “the vast majority of diagnoses of ID are, and will continue to be, made in early childhood.” However, as also noted this may “enable accurate diagnoses of the small percentage of individuals who are identified nearer the end of the developmental period” (p. 33) and align with various processes related to establishing eligibility associated with the transition from school-based supports and services to adult supports and services.Another advancement of note, which has already been highlighted in part, but is particularly important to consider in applying the 12th edition to future research, policy, and practice that will be led by readers of Inclusion, is the focus on an integrated approach to intellectual disability and perhaps most significantly, acknowledging the role of context in human functioning. As acknowledged by the authors, a variety of contextual factors (e.g., the immediate social setting experienced by a person, the neighborhood, community, or organization providing supports, and the overarching pattern of culture, society, country or sociopolitical influences) influence the outcomes of people with ID as well as the process of defining, diagnosing, classifying, and planning systems of supports. To truly advance toward the goal of enhancing human functioning through defining, diagnosing, classifying, and planning systems of supports, also assessing and addressing the influence of contextual factors on outcomes is critically needed. Recognizing the multilevel, multifactorial, and interactive nature of context and its influence on human functioning and personal outcomes can bring a greater focus to breaking down barriers to actualizing the supports paradigm. The practice guidelines, mentioned previously, provide initial steps to achieving this goal and can inform breaking down the silos of defining, diagnosis, classifying, and planning supports in the intellectual disability field by advancing a “shared vision of people with ID that incorporates capacities, opportunities, systems of supports, fairness, and the importance of valued personal outcomes” (p. 115). The 12th edition also creates an impetus for readers of Inclusion to consider how to further develop and evaluate research, policy and practice that recognizes that the ultimate goal of any actions to define, diagnose, and classify should be to advance planning for personalized supports that will enhance human functioning and valued personal outcomes. Further, it pushes forward the recognition that the systemic, contextual barriers that limit the actualization of this vision must also be targeted to advance inclusive outcomes across the life course and life domains, including education, health, employment, and community participation.Finally, although only briefly mentioned in the preface to the manual, it is important to note that the authors state that members of the Disability Experience Expert Panel of The Ohio State University Rehabilitation and Research Training Center on Health and Function for People with ID provided “excellent and relevant input regarding the definition of ID, the model of human functioning, supports, and their lived experiences” (p. xvi). To the best of this writer's knowledge, this is the first time that the lived experiences and perspectives of people with intellectual disability have been acknowledged as impacting the terminology and classification manual. If this is the case, this represents further movement forward in actualizing the right to self-determination in all aspects of life for people with intellectual disability, including in defining, diagnosing, classification, and planning supports. Such integration of the lived experiences of people with intellectual disability moves us from doing things, like creating a terminology and classification manual, for people with ID to doing these activities with people with ID. Perhaps in future editions of the manual, we may even move beyond doing these activities with self-advocates and instead be at a point where people with intellectual disability are leading these activities and academicians, policy-makers, and practitioners are supporting the ongoing advancement of the supports paradigm." @default.
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• W3217754216 date "2021-11-23" @default.
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• W3217754216 title "Commentary on the 12th Edition of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports" @default.
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