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.
Introduction and Overview
The term context is used frequently in the field of intellectual disability (ID), particularly since the introduction of the social-ecological model of disability. In this model, context is acknowledged as a key factor that influences human functioning and planning for systems of supports (Schalock et al., 2010; Schalock & Verdugo, 2012; Shogren, Luckasson, & Schalock, 2014). When Shogren et al. (2014) searched leading social science databases using the terms context and intellectual disability or mental retardation, over 73,000 articles dealing with context were found, with the majority of articles published in the past decade.
Despite the widespread use of the term context, there is limited specificity in its definition and explication. For example, the World Health Organization (WHO) in the International Classification of Functioning, Disability, and Health (ICF; WHO, 2001) adopted a social-ecological model and described contextual factors as environmental factors (including barriers and hindrances) and personal factors that focus on the interrelated conditions within which people live their everyday lives. However, the ICF does not specify literature-based contextual factors, suggest how these factors act as independent or intervening variables, or indicate how empirically derived influencing factors can be aligned with specific support strategies to enhance value-based personal outcomes.
To address this lack of a definitional framework, Shogren et al. (2014) synthesized the large body of literature on context, and developed the following broad definition: “Context is a concept that integrates the totality of circumstances that comprise the milieu of human life and human functioning” (p.110). We also elaborated on ways that the definition could be applied, stating that 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 community, organization, system, and societal policies and practices that can be manipulated to enhance functioning. We also stated that context could be used as an integrative framework to align and promote the seamless integration of disability policies, systems of supports, and personal outcomes.
The primary intent of this broad definition is to enable future development and analysis of the role of context in aligning disability policy, systems of supports, and personal outcomes in the ID field. Throughout our work in this area (see also Shogren, 2013) our premise has been that an integrative framework promotes the alignment of inputs (i.e., disability policy goals), individualized support strategies (i.e., throughput), and outputs (i.e., personal outcomes) across ecological systems. Further, we assume that by identifying contextual factors that serve as independent or intervening variables that influence outcomes across the microsystem, mesosystem, and macrosystems, we can better develop support strategies that enhance personal outcomes.
The purpose of the present article is to explicate the integrative framework component of our definition of context. To that end, the article has four purposes. First, we identify, from an international perspective, disability policy goals, personal outcome domains, and domain indicators that align with our integrative framework for context. Second, we highlight contextual factors that research suggests act as independent or intervening variables and that can be targeted through support strategies to enhance personal outcomes. Third, we use a logic model to show how disability policy goals, systems of supports, and personal outcomes can be aligned. Fourth, we discuss the implications of the context-based integrative framework.
Identifying Key Disability Policy Goals, Personal Outcome Domains, and Domain Indicators
A first step in using context as an integrative framework is to identify disability policy goals and personal outcome domains. Disability policy goals provide a framework for understanding the broad goals of the field and guide the selection of personal outcome domains and domain indicators. The assessment of these domain indicators provides measurable outcomes to document the degree to which disability policy goals are met (Brown, Hatton, & Emerson, 2013; Verdugo, Navas, Gómez, & Schalock, 2012). We summarize what the literature suggests about these factors in the following sections to inform our integrative framework.
Disability Policy Goals
Across national and international disability policy, multiple outcomes are referenced as targets of disability policy. We identified explicitly stated disability policy goals based on a review of key U.S. statutes (i.e., Individuals With Disabilities Education Improvement Act of 2004; Americans With Disabilities Amendments Act of 2008, the Developmental Disabilities Assistance and Bill of Rights Act of 2000, Section 504 of the Rehabilitation Act of 1973, as amended) as well as other recognized and frequently cited international policy documents (i.e., United Nations Convention on the Rights of Persons With Disabilities; Montreal Declaration on the Rights of People With Intellectual Disabilities; Hong Kong's Disability Discrimination Ordinance; Sweden's Discrimination Act ). These broad policy goals define the inputs to our integrative framework for context.
A team of three graduate students, under the supervision of the three co-authors, reviewed each of the previously referenced policy documents and created a verbatim list of each policy goal (and outcome) stated in the respective policy. This list was then reviewed by the co-authors, who grouped like items to form three broad policy goal areas. Although the specific terms differed across the statutes and documents, we used an iterative process involving each of the co-authors engaging in independent groupings of the policy goals, then discussing and revising their groupings until consensus was reached on three overarching areas (human dignity and autonomy, human endeavor, and human engagement) within which personal outcomes could be organized (see Table 1, column 1).
It is important to note that our focus in examining the literature was on policy goals related to personal outcomes. Some stated policy goals (i.e., equality of opportunity) are not personal outcomes, but process outcomes. Although such process outcomes are a key element of policy, and likely serve as an influencing factor for positive personal outcomes, our focus was on explicitly stated personal outcome domains.
Personal Outcome Domains
As part of the identification of policy goals, described previously, we also summarized explicitly stated intended outcomes domains associated with the respective disability policy goal(s) to define the outputs in our integrative framework for context. Once identified from the disability policy documents described previously, these outcome domains were (a) cataloged by the co-authors using two outcome measurement frameworks (The Council on Quality Leadership and the National Core Indicators) adopted by major nationally recognized outcome evaluation organizations (Bradley & Moseley, 2007; Council on Quality and Leadership, 2010), and (b) organized around the three policy goal areas (human dignity and autonomy, human endeavor, and human engagement). This listing is shown in Table 1, column 2. It is important to point out that these personal outcome domains are consistent with those proposed by AAIDD in the 11th edition of their Manual (Schalock et al., 2010) and outcomes used more widely in outcomes evaluation (Schalock et al., 2010; Schalock & Verdugo, 2012).
Personal Outcome Domain Indicators
Once the disability policy goals and associated personal outcome domains were identified, the authors used concept mapping (Kane & Trochim, 2007) to aggregate the multiple indictors identified from the literature review into a list of measurable indicators for each outcome domain. The exemplary indicators presented in Table 1 (column 3) are those that are well established in the field of ID (Schalock et al., 2010; Schalock & Verdugo, 2012) and provide an operational definition of each personal outcome domain. These operational definitions clarify the intended outcomes of policy goals and individualized supports.
Identifying Contextual Factors That Influence Personal Outcomes
Multiple contextual factors that operate across ecological systems act potentially as independent or intervening variables that influence systems of supports and personal outcomes. To better understand what is known about these influencing factors, we examined key reviews of the literature in each of our personal outcome domains areas (Table 1, column 2) to identify influencing factors. The purpose of this examination was to identify and catalog by outcome domain those factors influencing personal outcomes. This allowed us to better understand what is known about factors that influence the throughputs (i.e., individualized support strategies) in our integrative framework for context. Under the supervision of the co-authors, graduate students in special education conducted systematic searches of multiple databases (e.g., Google Scholar, EBSCO, PsycINFO) to identify literature reviews published in the last 5 years relevant to each personal outcome domain (self-determination, full citizenship, education or life-long learning, etc.) We chose the past 5 years to ensure the most recent information on contextual/influencing factors. The three criteria used to select a review were that: (a) it described a process for identifying and synthesizing the findings of articles; (b) was published within the 5-year time frame; and (c) related to one or more personal outcome domain (s). Reviews used were those authored by Amado, Stancliffe, McCarron,and McCallion (2013), Anderson et al., (2013); Grigal, Hart, and Weir (2013), Lysaght, Cobigo, and Hamilton (2012), Lysaght, Ouellette-Kuntz, and Lin (2012), Tichá, Hewitt, Nord, and Larson (2013), Verdonschot, De Witte, Reichrath, Buntinx, and Curfs (2009); Wehmeyer and Abery (2013), and Wullink, Widdershoven, Van Schrojenstein Lantman-de Valk, Metsemakers, and Dinant (2009).
These literature reviews were read by graduate students with the intent of identifying those variables that influenced (either positively or negatively) the personal outcome domain. For example, in the domain of self-determination, multiple factors were identified as influencing relative levels of self-determination including access to choice opportunities in residential environments and level of intellectual functioning. Two students coded 30% of the articles to examine the degree to which they agreed on the factors identified. They agreed in 93% of cases. After the graduate students created the lists of variables, the co-authors reviewed these lists for each personal outcome domain and went through an iterative process of organizing the factors to identify for each personal outcome domain those factors most commonly cited across the literature reviewed.
A summary of the most frequently noted influencing factors from the literature reviews in each personal outcome domain is presented in Table 2. It is important to note that these factors reflect what has been identified to date in the research literature. There are likely many more influencing factors, particularly at the meso and macro system level, that have not yet been adequately researched. Further, there may be relationships not captured in the existing research on the relationship between influencing factors and multiple outcome domains. Our intent was to engage in a broad review of what is known currently to inform the development of the throughput component of our integrative framework for context. What is illustrative about the influencing factor listed in Table 2, however, is that research has identified multiple contextual factors that influence outcomes, confirming the importance and wide use of contextual factors as independent and intervening variables in the field (even though they are often not described as such).
Aligning Disability Policy Goals, Systems of Supports, and Personal Outcomes
A logic model (Alkin, Vo, & Hansen, 2013; Frechtling, 2007) can be used to show the logical relationship among inputs (i.e., disability policy goals), throughputs (i.e., support strategies across ecological systems that consider contextual factors), and outputs (i.e., personal outcome domains). Based on the material presented in Tables 1 and 2 and described in the previous sections, Figure 1 depicts the relationship between the disability policy goals, systems of supports across ecologies, and personal outcome categories. In this alignment model, disability policy goals serve as “inputs” to individualized systems of supports across ecologies (i.e., throughputs) that, when implemented, can lead to changes over time (chronosystem) in personal outcomes (i.e., outputs).
The process of moving from policy goals, to systems of supports across ecologies, to enhanced outcomes occurs in a context that is shaped by diverse factors, values, and conditions for each person. As summarized in Table 2, an array of contextual factors can act as independent and intervening variables that can be used to target the provision of supports across the three ecological systems. For each individual, systems of supports need to be developed based on an understanding of the contextual factors that are most relevant for the individual (e.g., what outcomes are most important for the individual, what resources are available, and what supports across systems will enable those outcomes). For example, individual level (microsystem) supports could include supports related to skill development (e.g., learning new job skills and building social skills) and support development (e.g., supported employment opportunities and access to augmentative communication systems) for a person seeking new employment or social opportunities as their personal outcomes goals. Community and organization level supports (mesosystem) could include supports for building social networks and promoting community-based services and supports. Systems level supports could include policies and resources that facilitate the individual and organization level supports. By understanding the contextual factors that influence individual systems of supports, researchers, policy makers, and practitioners are in a better position to plan, select, implement, and evaluate systems of supports whose primary purpose is to enhance personal outcomes.
Implications of the Context-Based Integrative Framework
The logic model shown in Figure 1 highlights the role of the microsystem, mesosystem, and macrosystem in developing systems of supports that are based on an understanding of contextual factors that can operate across systems as a throughput between disability policy goals and personal outcomes. In this respect, practitioners, researchers, and policy makers involved in developing and evaluating systems of supports need to consider the degree to which effective processes are used to align inputs and outcomes, and consider contextual factors in selecting individualized supports. Better outcomes result when the alignment of inputs and outcomes is clear and streamlined at the individual (micro), community and organization (meso), and systems (macro) levels. The context-based integrative framework we have introduced here can promote this alignment and has four direct implications for research, policy, and practice: (a) promoting a seamless integration of core disability concepts, (b) developing systems of supports based on an understanding of influencing factors, (c) guiding outcomes-driven policy, and (d) identifying culturally relevant influencing factors and personal outcome domains.
Cultural Factors and Outcome Domains
Finally, a context-based integrative framework can be used in a wide range of cultures to identify culturally relevant input factors, delineate culturally based influencing factors, and employ culturally sensitive indicators to assess culturally valued personal outcomes. This recognition and valuing of culture within context acknowledges that some aspects of a person's context are presumed as valued and are not usually manipulated. Our approach to context assumes that each individual has an age, language, culture and ethnicity, gender, and family that are valued in themselves. This assumption demonstrates respect for people as they are, and takes a strengths-based perspective rather than a deficiency perspective about these core aspects of their being. Thus, it is not the act of changing someone's language or culture to “repair” their context and thus “improve” the individual, but rather this context-based framework takes a posture of acknowledging context as a culturally sensitive phenomenon that acts as either an independent or intervening variable and provides an integrative approach to planning, selecting, implementing, and evaluating systems of supports that enhance personal outcomes.
Using context as an integrative approach leads to clear processes for creating systems of supports that align disability policy goals, individualized supports that are targeted to contextual-based influencing factors, and personal outcomes. This approach provides for a seamless framework for integrating: (a) core concepts of disability policy with broad disability policy goals (Turnbull, Wilcox, Stowe, & Umbarger, 2001), (b) context (Shogren et al., 2014), (c) outcomes-driven policy formation (Turnbull & Stowe, 2014), and (d) personal outcome measurement (Brown et al., 2013). Further, by creating a continuous loop that enables systematic consideration of influencing factors in selecting, planning, implementing, and evaluating systems of supports for each individual we move away from a nebulous understanding of context, and identify ways that context can be understood and leveraged to identify the most beneficial systems of supports that enhance personal outcomes and those based on core concepts and broad disability policy goals that have relevance internationally.
Developing Systems of Supports
In addition to highlighting the importance of aligning a service delivery system's inputs, throughputs, and outputs, a logic model such as that depicted in Figure 1 has other advantages. Among the more relevant to the transformation that is currently occurring in disability-related policies and practices internationally are that a fully operationalized logic model: (a) articulates the operative relationships among service delivery components; (b) provides an important tool for program development, evaluation, and quality improvement; (c) enables service delivery systems to understand what must be done to achieve better effectiveness and efficiency; (d) identifies factors that can influence desired outcomes; (e) identifies core processes that reengineering, quality improvement, and enhanced performance can improve; (f) provides a framework for analyzing alternative strategies for achieving desired personal outcomes and community and organization outputs; and (g) clarifies for stakeholders the sequence of events and processes to allow for a fuller understanding of systems performance (Alkin et al., 2013; Frechtling, 2007; Schalock & Verdugo, 2012, 2013).
Knowledge of influencing factors provides an opportunity to enhance personal outcomes by targeting these factors when planning, selecting, implementing, and evaluating individualized systems of supports. The process of moving from policy goals to systems of supports that enhance personal outcomes occurs in a context that is shaped by diverse factors for each individual. Context is best understood from the perspective of the person and his/her values, personal goals, and personal desires. Therefore, contextual-based influencing factors will vary from individual to individual. However, by identifying contextual factors that have been commonly identified in research, we can begin to identify and target key areas that should be considered when building individualized support systems, and develop tools to identify the contextual factors that are most relevant for an individual.
An additional implication of the approach to context described in this article is that it helps operationalize the concept of outcomes-driven policy formation. For example, Turnbull and Stowe (2014) have recently suggested that “making explicit what seems implicit would add detail to ‘context' and its policy-related depictions…and [thereby] promote progressive, outcomes-driven policy” (p. 4). As these authors and others (e.g., Schalock & Verdugo, 2012) discuss, most public policies related to persons with intellectual disability have historically been developed based on concepts and values, and how best to implement these value-based policies in regard to resources, statutory changes, service delivery frameworks, and managerial strategies. Thus, to date, there has been more emphasis on process-driven policy formation than on outcomes-driven policy formation. As a result, jurisdictions are frequently unable to evaluate the effectiveness and efficiency of specific disability policies.
Furthering outcomes-driven policy formation requires a holistic framework that is based on clearly specified input factors, potential influencing throughput factors, and measurable personal outcome categories that can be used for outcomes evaluation and thus policy evaluation. From an outcomes-evaluation perspective, the integrative framework to context described in this article also allows investigators to determine the relative role that an influencing factor has on measured personal outcomes, and the mediating or moderating role that specific influencing factors, including specific support strategies, have on policy-related outcomes, as described previously.
The authors would like to thank George Jacob, UNM Special education program, and Becca Dixon and Anjali Forber-Pratt, Beach Center on Disability for their work organizing the literature reviewed for this article.
Karrie A. Shogren, University of Kansas, Beach Center on Disability; Ruth Luckasson, University of New Mexico; Robert L. Schalock, Hastings College.