Abstract

In light of the rapid evolution of research, policy, and practice in the intellectual disability (ID) field resulting from shifts in our conceptualization of disability and in frameworks for the diagnosis and classification of ID, systematic consideration of the multiple, interrelated contextual factors that impact research, policy, and practice are necessary to achieve valued outcomes for individuals with disabilities, their families, and society. The purpose of this article is to introduce a recently developed consensus definition of context and elaborate on application of this definition to research, practice, and policy in the ID field, with a specific focus on how context may be able to serve as an integrative concept to support the attainment of valued outcomes in the disability field for individuals with disabilities, their families, and society.

The notion that “context makes a difference” is increasingly acknowledged and recognized in society. An Internet search for “context matters” brings up blogs, companies, books, and international reports, all of which purport that a diverse array of personal and environmental factors influence outcomes for individuals, families, and society. In the intellectual disability (ID) field, context is increasingly cited as a factor that influences human functioning. The American Association of Intellectual and Developmental Disabilities (AAIDD) conceptual framework of human functioning (Schalock et al., 2010) identifies context as one of five factors that influences human functioning, along with intellectual abilities, adaptive behavior, health, and participation. The World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (2007) describes the importance of recognizing the influence of contextual factors, or “the complete background of an individual's life and living” (p. 16) on human functioning. In a review of literature on context in the ID field, Shogren, Luckasson, and Schalock (2012) identified over 117,000 hits in EBSCO for “context” and “disability,” with the majority of these hits occurring in the past decade.

Despite the widespread acknowledgment of the importance of contextual factors, a systematic framework for defining and examining the impact of the diverse, interrelated factors that make up context and impact human functioning has not been available in the ID field. Recently, Shogren et al. (2012) proposed a consensus definition of context, hoping to provide direction for beginning to think systematically about the influence of context on human functioning. The definition states:

Context is a concept that integrates the totality of circumstances that comprise the milieu of human life and human functioning. Context can be viewed as an independent and intervening variable. As an independent variable, context includes personal and environmental characteristics that are not usually manipulated such as age, language, culture and ethnicity, gender and family. As an intervening variable, context includes organizations, systems, and societal policies and practices that can be manipulated to enhance functioning. As an integrative concept, context provides a framework for describing and analyzing aspects of human functioning such as personal and environmental factors, supports planning, and policy development. (Shogren et al., 2012)

The purpose of this article is to elaborate on the application of this definition to research, practice, and policy in the ID field, with a specific focus on how context may be able to serve as an integrative concept to support the attainment of valued outcomes in the disability field for individuals with disabilities, their families, and society. In light of the rapid evolution of research, policy, and practice in the ID field resulting from shifts in our conceptualization of disability and the publication of the 11th edition of the AAIDD Definition Manual (Schalock et al., 2010, hereafter, “Manual”), which introduced the change in terminology to “intellectual disability”; the announcement that the American Psychiatric Association will publish the DSM-5 after extended discussion and debate around terminology, diagnosis, and classification related to ID; and the ongoing development of the ICD–11 by the WHO with implications for the diagnosis and classification of ID, considerations of context—particularly frameworks for considering the multiple, interrelated contextual factors that impact research, policy, and practice—are necessary to achieve valued outcomes for individuals with disabilities, their families, and society.

Why and How Does Context Matter?

As mentioned previously, despite general consensus that context matters, systematic work to define and delineate frameworks to understand context has been limited. In many ways this is understandable, we have proposed that context is the “totality of circumstances that comprise the milieu of human life and human functioning.” How is it possible to understand, define, and integrate information about the totality of circumstances that impact human functioning? How do we account for the variation that occurs from individual to individual, from community to community, from nation to nation in circumstances that impact human functioning?

Alternatively, though, what are the risks of making research, policy, and practice decisions without at least attempting to consider the totality of the circumstances that affect and will be affected by those decisions? Take for example, the issues encountered when the medical model dominated discourse in the disability field. The focus was almost exclusively on personal characteristics, namely deficits in functioning. This led to diagnosis and classification functioning as ends. In recent history in the education context, students with IQs in certain ranges went into classrooms for “educable” students, students with IQs in different ranges when into classrooms for “trainable” students with predetermined services and assumptions about outcomes linked to deficits in functioning. The application of this model in isolation led to a failure to consider the totality of circumstances. It specifically failed to consider other personal considerations that might matter, such as personal strengths and goals for the future, as well as the influence of the environment, including the impact of the organization of the education system and community and societal attitudes toward disability.

The social-ecological model of disability is increasingly dominating discourse in the disability field. This model has been integrated into the International Classification of Functioning, Disability, and Health (WHO, 2007) and the AAIDD Manual (Schalock et al., 2010). The social-ecological model directs increased attention to the impact of social and environmental factors on human functioning and the interaction between the person and their environment. The AAIDD Manual suggests the important of examining the “fit between a person's state of functioning and the demands of the environment in which the person lives” (p. 110). By assessing the support needs that emerge because of a lack of fit between the person's state of functioning and the demands of the environment, systems of supports can be created that enhance human functioning in preferred environments. This changes the focus from remediating the person, to solving problems that emerge because of a lack of fit. It also emphasizes that supports are likely needed for both the person as well as for the environment. For example, families will need resources and strategies to support the individual with a disability and service and support delivery systems, governments and society will need resources and strategies to build capacity to support with disabilities and their families to achieve valued outcomes.

Context as an integrative concept also highlights the fact that diagnosis and classification (which tend to focus on identifying and classifying deficits) are not ends and should not determine support needs, as these needs must be referenced to the person's overall state of functioning (not just deficits) as well as the demands of the environment. Nor should diagnosis and classification determine outcomes, as outcomes should be referenced to individual, family, and societal values and visions for the future. Instead, diagnosis and classification can serve a narrow purpose when aligned in a broader context with the provision of individualized supports to promote personally defined, valued outcomes. As long as systems exist that require diagnosis and classification to establish eligibility, this is an aspect of the context that necessitates this function. However, it is only one aspect of context. After eligibility is established, the focus moves to a social-ecological approach to identifying and providing individualized supports with the goal of enhancing human functioning. Focusing on context as an integrative concept highlights the importance of thinking about the alignment of the differing functions, and the models that underlie them.

Thinking about context as an integrative concept that pushes researchers, policymakers, and practitioners to think more about the totality of circumstances also clarifies, to some degree, how ongoing debates and divisions emerge in the field. For example, diagnosis and classification, which tend to fall within a medical model of understanding disability, become problematic for achieving the outcomes valued by individuals with disabilities, their families, and society when they are considered in isolation (i.e., not in the broader context of the totality of circumstances that influence human functioning). But in some contexts they have a place and a limited function, when considering the totality of circumstances. When diagnosis and classification are necessary to access services and if accessing services is a desire or need of individuals and their families, this is part of the context that must be aligned and integrated with other aspects of the context. But, if only diagnosis and classification are considered (i.e., without also considering how diagnosis and classification align with the identification of support needs and the delivery of personalized supports), context is not being used as an integrative concept, which limits the ability of research, policy, and practice to promote desired outcomes, notably the enhancement of individual, familial, and societal functioning.

The same holds true when researchers fail to consider the totality of circumstances. School-based researchers historically, when evaluating outcomes for students with (and without) disabilities, did not have analytic approaches that allowed them to comprehensively account for the nesting of contextual influences (e.g., students receiving instruction in different classrooms, in different schools, in different communities) that may influence outcomes. Changes were examined in student behavior and outcomes, but the context within which those changes occurred were rarely systematically explored or examined as a factor that influenced outcomes. But, if only personal factors (i.e., student characteristics such as disability) are examined this can lead to incorrect inferences about the relationship between personal characteristics and outcomes in situations when classroom, school, or community-level factors may make as much as or more of a difference. Contextual factors are essentially overlooked or relegated to “control variables.” Statistical procedures are increasingly being developed and applied (e.g., multilevel modeling; Snijders & Bosker, 2011) that allow for systematic consideration of these nested factors and their impacts across levels of the ecological context. Analyses have shown that accounting for nested contextual influences can impact the interpretation of relationships between interventions and outcomes, suggesting the need to examine and include in research contextual factors across the multiple systems that exert an influence on individuals with disabilities and their families (and, relatedly, in the implementation of research findings). Thinking more broadly about context and its influence on outcomes necessitates reconsideration of the relevance of “controlling” for context in research and instead suggests the importance of systematically measuring and examining diverse contextual factors to understanding their influence on outcomes, recognizing that the fluid and complex nature of the context must shape conclusions drawn from research and must inform efforts to translate research into practice.

The development and implementation of policy also can benefit from the consideration of context. Policy itself is an important part of context—the policies of a nation, state, community, school, or organization significantly influence the experiences and opportunities available to individuals with disabilities and their families. In the AAIDD Manual (Schalock et al., 2010), a framework was introduced to organize the multiple factors that influence and are influenced by public policy. In the following section, further detail is provided on this framework and its applications to understanding the totality of circumstances that enhance human functioning, particularly as decisions are being made about research, policy, and practice related to developing and implementing diagnosis, classification, and supports planning models.

Context and Public Policy

When exploring the impact of public policy on individuals with disabilities, Turnbull and Stowe (2001) argue that there is another model for understanding disability, the public studies model. Just like the medical model and the social-ecological model, this approach to understanding disability can help identify additional aspects of context, particularly public policy–related factors that should be part of an approach to context that serves as an integrative concept to support the attainment of valued outcomes. The public-studies model focuses on the relationship between government and individuals, specifically the role of government in establishing rights, the allocation of resources, and identifying the goals and values of policy.

Thinking about disability from this perspective delineates elements of context related to societal values, governmental structures, and the availability of laws that afford rights. It suggests that the policy development process is influenced by a number of factors and that a central consideration in the policy development process should be the impact that policy will have on practice and the attainment of valued outcomes, but just like with research and practice, to fully understand the impacts (both positive and negative), the totality of circumstances must be considered. For example, when weighing changes in diagnosis and classification systems, particularly because of the high stakes of processes deeply connected to eligibility determinations, careful consideration needs to be given to contextual factors that influence these decisions, the policy related implications, and ultimately the implications for enhancing human functioning.

Shogren et al. (2009) attempted to develop a comprehensive framework for understanding (a) inputs to public policy, (b) desired outcomes of public policy, and (c) the systems through which public policy is filtered that was included in the AAIDD Manual (Schalock et al., 2010). The framework is shown in Figure 1. Under this model, contextual factors that influence policy development (i.e., social factors, core concepts, and changing conceptualizations) are filtered through the multiple systems that influence human functioning (Bronfenbrenner, 1979)—the microsystem (the individual and their family), mesosystem (the neighborhood, community, and organizations providing supports/services), macrosystem (overarching patterns of culture and society), and the chronosystem (evolution/change over time). There are then desired outcomes at the individual, family, society, and systems change level. The ecological systems framework developed by Brofenbrenner (1979) provides a useful framework for thinking about the nested levels of influence across individuals, families, schools, service delivery systems, communities, and society. It also recognizes that change over time is inevitable.

Figure 1.

Contextual factors in public policy (reprinted from Schalock et al., 2010, p. 181, Figure 13.2).

Figure 1.

Contextual factors in public policy (reprinted from Schalock et al., 2010, p. 181, Figure 13.2).

The Shogren et al. (2009) framework allows for a comprehensive look at various contextual factors that influence public policy, and ultimately the achievement of valued outcomes across multiple levels—individuals, families, society, and even the systems that serve people with disabilities and their families. It also provides a model for thinking more comprehensively about context—particularly as policy decisions are being made, but also as research and practice decisions are being made. It emphasizes the importance of thinking about the totality of circumstances and recognizing that there may at times be competing demands in attempts to achieve individual, family, societal, and systems change outcomes and that all of this plays out in a complex ecology that is changing over time. It further highlights the importance of policy focused not just on the individual but also on families and society to achieve the valued outcomes identified in disability policy. Supports are needed not only at the level of the individual, but also at the level of the family and society to achieve desired outcomes such as full participation, economic self-sufficiency, and independent living.

Conclusions and Recommendations

Naming, diagnosing, classifying, and building systems of supports does not occur in a vacuum; nor would most people suggest it does. Although the idea that “context matters” and that diagnosis, classification, and supports planning occurs in a complex ecology with multiple, interactive levels of influence is generally accepted, moving beyond general acceptance to systematically considering these issues in research, policy, and practice are two separate issues. The notion that context matters is deceptively simple, the complications occur when trying to systematically apply this notion.

Understanding, defining, and integrating information about each and every personal and environmental factor that impacts human functioning into every research, policy, and practice decision that is made is not possible or practical. However, using context as an integrative concept provides an opportunity to ensure that when research, policy, and practice decision are being made, these decisions are situated in a systematic consideration of the broader ecological context. This may help ensure a clearer alignment between the functions of diagnosis and classification (i.e., means of establishing eligibility) and the functions of building systems of supports (i.e., means of enhancing human functioning). Further, it broadens the idea of systems of support beyond supports just for the individual but also supports for families and society to enhance functioning. Policy and practice, then, can differentiate between these functions and align them to promote valued outcomes in a specific ecological context. And, research can be used to identify contextual factors that are important to explore (not control) as independent and intervening variables, and that should be considered when developing policy and implementing research-based practices. Although, it is important to remember that research happens in a complex context as well. Researchers must always be cautious about overgeneralizing findings and recognize that the totality of circumstances can differ for each individual, family, community, and over time and the conclusions and implementation of “research-based practices” must be highly sensitive to contextual differences.

Situating research, policy, and practice in an integrative understanding of context introduces complexity in decision-making processes, requires different ways of thinking and analysis, and necessitates more attention to research, policy, and practice outside of the immediate microsystem we experience. But, it may also be a way to enable progress toward the attainment of desired personal, family, societal, and systems change outcomes. Considering the totality of circumstances both descriptively and experimentally—whenever engaging in research, policy, and practice—will promote greater consideration of the cascading impacts of decisions that are made in relation to naming, diagnosing, classifying, and creating systems of supports. Thinking about the “totality of circumstances” promotes a greater understanding of the complex personal and environmental factors that influence outcomes. Although this understanding will change and evolve over time, as one would expect in the chronosystem, in the present it provides a means to help us move away from either–or thinking, particularly with regard to models of disability and approaches to supporting individuals with disabilities, their families, and society, and enables rich discussions of how in a complex ecology there are multiple needs and demands that influence the attainment of valued outcomes. For example, a more comprehensive understanding of context could help identify specific circumstances when different models of disability may be useful to promote outcomes—and how to align these specific circumstances and make rational decisions that benefit individuals with disabilities, their families, and society.

Debates will (and should) continue about the most appropriate model for understanding disability, about what should be included in definition, classification, and supports planning systems, about how to best assess and address support needs, and about what aspects of context make a difference. Debate is healthy and drives change and progress in the field through the chronosystem. However, as changes are being debated it is important to situate these debates not just in the notion that context matters, but in a framework that provides systematic guidance for thinking through the influence of context. Operationalizing the influence will be challenging, and will need to be individualized to different debates, but moving beyond the notion and situating debates and discourses in an integrative concept has the potential to promote a focus on outcomes and a greater recognition of the multiple complex, interrelated factors that must be considered when working to achieve valued outcomes for individuals, families, and society.

The author wishes to thank Rud Turnbull for his comments on drafts of this article.

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Author notes

Author:

Karrie A. Shogren (kshogren@illinois.edu), University of Illinois at Urbana–Champaign, 1310 South Sixth St., Champaign, IL 61820.