This article focuses on recommendations for naming, defining, diagnosing, classifying, and planning supports for individuals with intellectual disability (ID). The article provides an overview of the essential questions addressed by the respective functions and provides a series of specific recommendations that address the high stakes involved for people with ID, their families, and the field of ID.
In the preceding article (Part I, Schalock & Luckasson, 2013), we discussed what is at stake in the lives of people with intellectual disability (ID), their families, and the field of ID when far-reaching decisions are made regarding naming, defining, diagnosing, classifying, and planning supports. In Part I, we provided an overview of the current transformation era and the ways in which the field of ID is also transforming. We delineated the essential questions related to naming, defining, diagnosing, classifying, and planning supports and also identified what is at stake in reference to each function. A summary of the delineation of functions, essential questions, and what is at stake is presented in Table 1.
In Part I, we also summarized current thinking regarding naming, defining, diagnosing, classifying, and planning supports and stressed that because the stakes are high for people with ID, their families, and the ID field regarding each of these functions, any potential decisions should be discussed within a high-stakes discourse in which all stakeholders have the opportunity to participate and consider the ramifications of recommendations. To facilitate that high-stakes discourse, we present a number of recommendations that inform the debate and provide a sound basis for making critical decisions. As an overview to these recommendations, we urge that
In naming, the use of the term intellectual disability be continued.
In defining, that three elements be retained (intellectual functioning, adaptive behavior, and age of onset) and that the field distinguish between an operational definition of ID that is used as the basis for a diagnosis of ID and a constitutive definition of ID that is used to understand the constructs of “disability” and “intellectual disability”.
In diagnosing, that a diagnosis of ID be based on the person meeting the elements stated in the operational definition and professional best practices regarding assessment and score interpretation.
In classifying, that a classification scheme be used that is based on the multidimensionality of human functioning and connected to an explicitly stated intended purpose.
In planning supports, that support strategies be used that are aligned with personal goals, assessed support needs, and desired personal or family outcomes.
The construct of ID lies within the general construct of disability, which helps one understand why the term intellectual disability has emerged as a preferred term in the field. It is preferred because it (a) reflects the changed construct of disability promulgated by the American Association on Intellectual and Developmental Disabilities ([AAIDD]; Schalock et al., 2010) and the World Health Organization (WHO) International Classification of Functioning, Disability, and Health ([ICF]; WHO, 2001); (b) aligns better with current professional practices that are focused on functional behaviors and contextual factors; (c) provides a logical basis for individualized supports provision as a result of its basis in a social–ecological framework; (d) is less offensive to individuals and their families; and (e) is more consistent with international terminology (Brown, 2007; Schalock & Luckasson, 2005; Schalock, Luckasson, & Shogren, 2007).
Although intellectual disability is the currently preferred naming term, it is critical to note that the term covers the same population of individuals who were diagnosed previously with mental retardation in number, kind, level, type, and duration of the disability and the need of people with this disability for individualized services and supports. Furthermore, every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual disability (President's Committee for People with Intellectual Disabilities, 2004).
Any choice of a naming term involves serious considerations of personal and social context, intended and received meaning, and use in terms of ownership and power. In addition, a naming term must have common support and acceptance among all parties to ensure communication clarity and usefulness (Luckasson, 2003). These considerations mean that the process of selecting a naming term for this disability is fraught with risks. For example, the term intellectual developmental disorder, recently suggested by some, is unsupported by the field of ID and by people with the disability and their families. Adoption of the naming term of intellectual developmental disorders would provoke unnecessary conflict and confusion in the field, create divisions within the ID community, and disrupt the emerging international consensus regarding the term intellectual disability. In this regard, it is instructive to review the enormous pushback and resistance to the American Psychiatric Association's DSM workgroup trial balloon of using intellectual developmental disorder. Consequently, their proposal was withdrawn in the face of widespread opposition. Thus, our recommendation is to use the name intellectual disability.
Defining refers to precisely explaining the term and establishing the term's meaning and boundaries. As discussed in Schalock and Luckasson (Part I, 2013), today the field distinguishes between an operational and a constitutive definition of ID (Wehmeyer et al., 2008). The operational definition is used to diagnose an individual and thus addresses the question of who is “in” and who is “out” of the category. Our recommendation is to continue to use the three elements contained in the operational definition promulgated by the AAIDD: “Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18” (Schalock et al., 2010, p. 1).
We recommend further that a constitutive definition of ID be used to understand the constructs of disability and intellectual disability and the context of ID. As generally understood, a disability is the expression of limitations in individual functioning within a social context that represents a substantial disadvantage to the person. The construct of ID belongs within this general construct of disability, which emphasizes the interaction between the person and his or her environment and focuses on the role that individualized supports play in enhancing human functioning.
A constitutive definition also allows policy makers, practitioners, and researchers to better understand the context of human functioning. As proposed recently by Shogren, Luckasson, and Schalock (2012), context is a concept that integrates the totality of circumstances that comprise the milieu of human life and human functioning. Thus, context can be viewed as both an independent and intervening variable. As an independent variable, human functioning is influenced by personal and environmental characteristics that are not usually manipulated, such as age, language, culture and ethnicity, gender, and family. As an intervening variable, human functioning is influenced by organizations, systems, and social policies that can be manipulated to enhance an individual's or family's functioning. Thus, our recommendation is to not only distinguish between an operational and constitutive definition of ID but also to use a constitutive approach to understand the context of ID and human functioning.
In that regard, we would caution about the confusion that would occur in the field if intellectual and cognitive were incorrectly treated as synonyms. There are subtle differences in meaning between these two concepts (Oxford University Press, 1984), which also have different linguistic roots (Shipley, 1984, pp. 129, 209). Intellectual relates to intelligence and its use (i.e., intellectual functioning). The term intelligence (a noun) refers to a general mental capability that includes reasoning, planning, solving problems, thinking abstractly, comprehending complex ideas, learning quickly, and learning from experience (Gottfredson, 1997). Intellectual functioning is a broader term than intelligence, focusing on the application of intelligence to human functioning. Human functioning is dependent on intelligence and the other dimensions of human functioning, including the adaptive behavior that one exhibits, the person's mental and physical health, the opportunities to participate in major life activities, and the context within which people live their everyday lives (Luckasson & Schalock, 2012; Schalock et al., 2010, 2012).
Cognitive relates to cognition and the state of knowing. The term cognition (a noun) refers to the mental processes involved in acquiring knowledge and the interpretation or appraisal of information (Weiten, 2010). Cognitive functioning is a broader term than cognition, focusing on the state of knowing, perception, awareness, and knowledge (Baars, 1986; Simon, 1992). Given the above distinction, it is understandable that cognitive is the preferred (and accurate) term when referring to mental changes related to traumatic brain injury, stroke, and dementia. Cognitive is not accurate to use as a synonym for intellectual, however, given that it is significantly different from our understanding of intelligence and intellectual functioning. Thus, the confusion regarding treating intellectual and cognitive as synonyms should be avoided. For example, a draft International Classification of Diseases (11th ed.; ICD–11) Content Form tried to incorporate the term cognitive, apparently as a synonym to intellectual, but with no explanation, definition, or justification. Moreover, the use of the terms intelligence and intellectual has an accepted history of over 100 years in the field of ID and has a well-researched and widely used international assessment battery.
The function that potentially has the highest stake for individuals and their families is the diagnosing of ID, because a diagnosis not only establishes the presence of the disability in an individual but also makes the person eligible (or ineligible) for services, benefits, and legal protections. Thus, the diagnostic process should not be undertaken casually or without regard to these diagnosis-related recommendations. First, the diagnosis of ID should be based on the person meeting the criteria stated in the operational definition of ID (i.e., the three elements). Furthermore, a valid diagnosis of ID also requires (a) comparing the individual's functioning to age peers in typical (i.e., natural) community environments; (b) using culturally and linguistically relevant individualized assessments; (c) using psychometrically sound, individually administered instruments that have demonstrated psychometric properties, including measurement error (i.e., standard error of measurement); and (d) involving evaluators whose expertise includes familiarity with the construct of ID, assessment strategies, professional ethics, and clinical judgment as well as familiarity with the person.
We would also caution policy makers not to inadvertently increase, from three to four, the number of elements in the operational definition of ID. All accepted definitions of ID for at least the last 50 years have included three elements (IQ, adaptive behavior, and age of onset). In reference to current deliberations and discussions regarding the ICD–11, parts of the draft Content Form require proof of four elements (IQ, learning, adaptive behavior, and age of onset). Expanding to four elements in an operational definition would instantly and significantly increase the diagnostic assessment burden. Not only would there be one more element to test for and prove prior to diagnosis, but there are currently no valid standardized tests to assess learning as separate from the assessment of intelligence. Current assessments of learning focus on students' progress toward instructional goals and their educational outcomes, not on elements required for a diagnosis of ID. Given that one of the goals of WHO is to help underresourced countries do a better job of identifying people with ID to determine accurate prevalence and provide supports to individuals and their families, to suddenly require both an additional element in the operational definition of ID and an additional testing burden to prove that element would create a significant new roadblock to identification and undermine WHO's purposes. There is no justification proposed for this enormous change of adding a new diagnostic element, which would significantly affect prevalence rates, increase the global assessment burden for validly diagnosing people with ID, invalidate the diagnoses of people who currently have a diagnosis of ID in which three elements were verified, and require substantial new resources and testing instruments for future diagnostic assessments of ID. Thus, our recommendation is to retain three elements (IQ, adaptive behavior, and age of onset) in the operational definition of ID.
Our general recommendation regarding classifying is that policy makers and practitioners use a classification scheme that is based on the multidimensionality of human functioning and an explicitly stated intended purpose. In Part I (Schalock & Luckasson, 2013), we outlined (see Part I, Table 3) the components of a multidimensional classification system.
As the field moves increasingly to an ecological focus and a supports paradigm, the intended purposes of best practice classification systems become apparent. In reference to funding, for example, individuals are most likely to be grouped for reimbursement or funding on the basis of a weighted combination of factors that include assessed support needs, adaptive behavior, health status, and context (e.g., residential platform and geographical location). In reference to research, the focus will continue to be on the multidimensional predictors of human functioning and desired personal and family outcomes. In regard to supports planning, individualized supports will increasingly be based on the pattern and intensity of assessed support needs across human functioning dimensions. As reflected in these intended purposes, we recommend further that the classification scheme be relevant to desired social policies, explicitly aligned with intended purposes, and equitable in terms of resource allocation.
A constitutive definition of ID that focuses on the social–ecological nature of disability and the potential of individualized supports to enhance human functioning establishes both the framework for planning supports and the basis for our general recommendation that support strategies should be aligned with personal goals, assessed support needs, and desired personal or family outcomes.
A framework for planning supports involves the following four guidelines: First, any person–environment mismatch that results in needed supports can be addressed through the judicious use of individualized supports rather than focusing on “fixing the person.” Second, given the extent to which these individualized supports are based on thoughtful planning and application, it is likely that they will lead to improved human functioning and enhanced personal outcomes. Third, as a bridge between “what is” and “what can be,” the focus of educational and adult habilitation service systems shifts to understanding people by their types and intensities of support needs rather than by their limitations. Fourth, although there is a reciprocal relationship between impairments and support needs in that greater personal limitations will almost always be associated with more intense support needs, a focus on reducing the mismatch between individuals' competencies and the requirements of the environments within which they live, rather than a focus on deficits, is more likely to identify the systems of supports needed to enhance human functioning and personal outcomes.
These four guidelines provide the rationale for our recommendations regarding planning supports. We recommend that the approach used to plan supports should (a) express a society's commitment to enhance the functioning of individuals with ID and their family; (b) address personal goals and assessed support needs; (c) use systems of support that involve natural supports, technology, education and new skills learning, environmental accommodation, incentives, personal strengths, and professional services (Schalock & Verdugo, 2012; Thompson et al., 2009); and (d) involve support teams composed of the individual and family members who work with direct support staff and other organization personnel to align needs, resources, and desired outcomes.
Best practices in the field of ID require attention to multiple issues associated with naming, defining, diagnosing, classifying, and planning supports. It is critical that policy makers and practitioners use current terminology; distinguish between operational and constitutive definitions of ID; diagnose people on the basis of current best practices; classify people on the basis of a stated rationale that considers the multiple dimensions of human functioning; and provide individualized supports that are aligned with personal goals, assessed support needs, and desired personal and family outcomes. These best practices are premised on a number of core concepts and principles inherent in recent public policies (Brown & Radford, 2007; Montreal Declaration, 2004; Salamanca Statement, 1994; Shogren et al., 2009; Shogren & Turnbull, 2010; United Nations, 2006). These concepts and principles are person referenced in that they acknowledge the importance of inclusion, empowerment, provision of individualized and relevant supports, enhancement of productivity, and support of family unity. They are also service-delivery referenced in that they promote antidiscrimination, coordination and collaboration, and accountability.
The recommendations for naming, defining, diagnosing, classifying, and planning supports discussed in this article are, in our opinion, reflective of these core concepts and principles and thus provide specific parameters to both inform and facilitate the high-stakes discourses that are occurring nationally and internationally regarding the five functions. To inform the debate and provide a sound basis for making critical decisions, we summarize in Table 2 the recommendations discussed in this article.
In conclusion, the stakes are high for individuals and their families as well as for the field of ID when decisions are made about naming, defining, diagnosing, classifying, and planning supports. These high stakes include how people with the disability are regarded and whether they are included or excluded from their communities, stigmatized, eligible for benefits, or given fair consideration in government planning. The stakes are also high in regard to improved understanding, societal reciprocity, and the involvement of people with ID in the design and delivery of appropriate supports. Discourse around the functions should consider each of these effects and involve all relevant stakeholders. In addition, decisions about changes in these functions should be based on best practices and important values, such as inclusion and fairness.
People with ID face many grave challenges, especially in times of transformation and diminishing resources. Risks of splintering the field, including people with disabilities, families, professionals, policymakers, and researchers, are also great. Thus, all decisions regarding the five functions discussed in this article should consider the high stakes and their effects on the lives and personal goals of people with ID and their families so as to ensure that the policies and practices related to naming, defining, diagnosing, classifying, and planning supports policies are consistent with societal goals and personal and family values.
Ruth Luckasson (e-mail: email@example.com), Department of Educational Specialties, MSC05 3040, College of Education, University of New Mexico, Albuquerque; Robert L. Schalock, Hastings College, NE.