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 system that serves individuals with intellectual disability (ID) has the responsibility to build contexts that enhance human functioning and promote valued outcomes. This responsibility entails being responsive to the contextual factors that impact peoples' lives. Some aspects of context cannot or should not be changed, but rather must be understood and respected. Other aspects of context can and should be changed so that the individual can grow and thrive. The purpose of this article is to describe how a system's responsiveness can be strengthened to deliberately build contexts that enhance human functioning and promote valued outcomes for individuals with ID.
The notion of context arises in many ways in the field of ID. For example, the individual's personal and environmental contexts are essential pillars of a social-ecological understanding of disability, a multifactorial approach to etiology, the multidimensional model of human functioning, and the supports paradigm. Additionally, the need to understand contextual factors influencing people with ID is emphasized in the five assumptions necessary to implement the definition of ID (Luckasson, 2016), the assessment of intellectual functioning and adaptive behavior (Schalock et al., 2010), the elements used in subgroup classification (Schalock & Luckasson, 2015), the provision of individualized supports (Schalock & Luckasson, 2014; Thompson, Schalock, Agosta, Teninty, & Fortune, 2014), the evaluation of personal outcomes, and the development, implementation, and the evaluation of disability policy (Claes, van Hove, Vandevelde, van Loon, & Schalock, 2012; Shogren, Luckasson, & Schalock, 2017).
Recent published work explores this need to understand the concept of context and contextual factors influencing human functioning. Specifically, researchers have provided a definition of context and described its application in the field of ID (Shogren, Luckasson, & Schalock, 2014); demonstrated how context can be used as an integrative framework to align disability policy goals, supports, and outcomes (Shogren, Luckasson, & Schalock, 2015); and presented a context-based change model that can be employed to unfreeze the status quo and drive valued outcomes (Shogren, Schalock, & Luckasson, in press).
The present article extends this work by describing a model that systems can use to build contexts that enhance human functioning and promote valued outcomes for individuals with ID. The model (a) is based on two core concepts: system responsibility and system responsiveness; (b) employs a two-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; and (c) identifies a number of indicators that can be used to assess the quality of a system's responsiveness. 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. Throughout the article:
Context is defined as a concept that integrates the totality of circumstances that comprise the milieu of human life and human functioning. Context includes both independent variables, including factors that are not usually manipulated (e.g., age, language, culture and ethnicity, gender, and family); and intervening variables, such as community, organization, system, and societal policies and practices that can be manipulated to enhance human functioning and valued personal outcomes (Shogren et al., 2014).
A system is defined as any organization or combination of organizations that provides supports to people with ID, including paid-support organizations (i.e., service/supports provider agencies); state or regional regulatory and funding entities that implement, monitor, and evaluate ID-related policies and practices; and other natural support providing entities such as faith communities, community centers, or any group with the potential to support people with ID. (Note: Although natural support organizations often have different processes than formal support organizations for supporting people with ID, we assert they can benefit from participation in contextual analysis to design and implement support strategies for all people that benefit from the organization, including people with ID).
Overview of a Model to Build Context
A model is an image or standard developed to represent an idea. We propose a model for building context that can be used to increase understanding and guide policies and practices. The building context model discussed in this article is grounded in two core concepts: system responsibility and system responsiveness. We define system responsibility as a system's obligation to build a context that enhances human functioning and promotes valued personal outcomes for an individual. We define system responsiveness as the quality of the processes used to design and implement support strategies that are aligned with the contextual factors that influence the person and that lead to enhanced human functioning and valued personal outcomes.
Implementing the model involves two steps that strengthen a system's responsiveness. Step 1 involves conducting a contextual analysis that identifies relevant independent and intervening variables in a person's life. The analysis incorporates a framework that aligns these variables with disability policy goals and personal outcome domains. Step 2 involves selecting support strategies that address the independent and intervening variables identified in Step 1, and implementing them through the personal support plan process.
After implementing the two steps, systems must use a number of system responsiveness indicators to assess the quality of the process used to (a) identify context-based independent and intervening variables, including factors that facilitate or hinder change; (b) align support strategies with identified context-based influencing factors, disability goals, and associated outcome domains; and (c) develop support strategies that are relevant to the person; encompass a strengths-based approach that focuses on valued outcomes; are implemented in a flexible way depending on the individual's strengths and limitations; and are timely in their planning, implementation, review, and evaluation. By evaluating system responsiveness indicators, systems can take steps to ensure responsiveness and be responsible for promoting human functioning and valued outcomes.
Step 1: Conduct a Contextual Analysis
The first step in building a context to enhance human functioning and valued outcomes is identifying relevant independent and intervening variables in a given person's life. Contextual analysis has emerged as a useful tool to accomplish this (Schalock, Verdugo, & van Loon, in press; Shogren et al., in press; Verdugo, Jenaro, Calvo, & Navas, 2017).
Identify Independent Variables
Independent variables, which are part of the person's context, are typically not manipulated but must be understood in order to design and deliver effective supports. Independent variables include factors such as age, language, culture and ethnicity gender, family characteristics, and current personal goals. These variables are analogous to cultural factors, including language patterns, ways of living of a group, shared norms, values, and assumptions (Samuels & Ryan, 2011). As reflected in Step 2, addressing these independent variables is essential to the successful selection and implementation of support strategies that are responsive to a person's context.
Identify Intervening Variables
Intervening variables include those factors that can be manipulated/changed to enhance human functioning and valued outcomes. Intervening variables include community, organization, system, and societal policies and practices, including supports available to achieve valued personal outcomes. Some intervening variables facilitate change; others inhibit change.
A useful way to identify intervening variables is to organize their identification around personal outcome domains, recognizing that the supports needed to achieve valued outcomes will change with time and development. Table 1 provides a sample of intervening variables that could potentially influence personal outcome domains. The material presented in Table 1 is based on the previously published synthesis of disability policy goals (i.e., promotion of human dignity and autonomy; human endeavor; and human engagement) and associated personal outcome domains (Shogren et al., 2015).
In Table 2 we provide an example of how a contextual analysis can be used to identify both independent and intervening variables for a person with ID. The example involves Marissa, a young woman beginning to plan for the transition from school to adult life. She is currently 18 years old and is receiving services from her school district in an 18-21 transition program that operates at a local community college. She is enrolled in community college courses with support from her educational team and is doing job shadowing to learn about and explore different job options. She lives at home with her parents, grandparents, and three siblings.
Step 2: Select Support Strategies
Step 2 involves selecting support strategies that address the independent and intervening variables identified in Step 1. These support strategies should be aligned with both policy goals and key personal outcome domains that the person with ID and their support team has identified as important. Researchers have synthesized the national and international disability policy literature related to policy goals and personal outcome domains (Shogren et al., 2015). Through this work, three overarching disability policy goals (i.e., promotion of human dignity and autonomy; human endeavor; and human engagement) with associated personal outcome domains were identified and are summarized in Table 1, along with potential intervening variables. The authors recommend that these personal outcome domains be used as a framework to align support strategies to personal outcome domains.
In selecting possible support strategies, the supports planning team should identify potential supports that address the independent and intervening variables identified in Step 1. These support strategies should be derived from the literature and best professional practices and incorporated into a Personal Support Plan. In Table 3, we provide examples of potential support strategies that can be implemented into Marissa's Personal Support Plan.
Assessing the Quality of a System's Responsiveness
System responsibility requires meeting the obligation to build a context that enhances human functioning and promotes valued personal outcomes for an individual with ID. In order to meet this obligation, systems must use a number of system responsiveness indicators to assess the quality of the process used to (a) identify context-based independent and intervening variables, including factors that facilitate or hinder change; (b) align support strategies with identified context-based influencing factors, disability goals, and associated outcome domains; and (c) develop support strategies that are relevant to the person; encompass a strengths-based approach; are implemented in a flexible way depending on the individual's strengths and limitations; and are timely in their planning, implementation, review, and evaluation. We have organized these system responsiveness indicators into three categories to facilitate their assessment and use to strengthen a system's responsiveness. Indicators associated with each of the three categories are presented in Table 4.
Systems should assess the quality of their responsiveness based of the degree to which system responsiveness indicators are evident in the approach the system takes to planning, implementing, reviewing, and evaluating person-centered and context-based support strategies. These four activities (i.e., planning, etc.) are frequently incorporated into the personal support plan process (Schalock, Thompson, & Tasse, in press), and are also the essential elements of a context-based change model (Shogren et al., in press). The actual assessment of the system's responsiveness involves the collaborative self-assessment of best practice indicators, which in the case of this article are the system responsiveness indicators listed in Table 4. This assessment approach is commonly used to provide information for continuous quality improvement (Lee, 2016), performance management (Schalock Verdugo, & Lee, 2016), and system transformation (Schalock et al., in press). Assessment results are used to identify indicator-based quality improvement activities that are taken to strengthen a system's responsiveness.
A useful evaluation framework for assessing the quality of a system's responsiveness is presented in Appendix A. The examples found in Column 3 of Appendix A are extracted from the information presented earlier in Table 2 (“Identifying Independent and Intervening Variables Through a Contextual Analysis”) and Table 3 (“Potential Support Strategies for Marissa Based on Information From the Contextual Analysis and Using a Holistic Framework”). The inclusion of a case-based example in an assessment of the quality of a system's responsiveness underscores the fact that assessing a system's responsiveness needs to be based on a review of—or familiarity with—personal support plans that are planned, implemented, reviewed, and evaluated using contextual analysis, person-centered planning, the supports paradigm, and outcomes evaluation. As used in the assessment instrument found in Appendix A, the scoring metric is on a 4-point rating scale: 3 = high degree to which system responsiveness indicators are evident; 2 = moderate degree to which system responsiveness indicators are evident; 1 = low degree to which system responsiveness indicators are evident; 0 = system responsiveness indicators absent.
Guidelines to Facilitate Building Context
The responsibility to build contexts that enhance human functioning and promote valued outcomes through strengthening system responsiveness requires a number of companion actions. These actions are reflected in the following five guidelines that involve (a) using a holistic approach to human functioning; (b) providing a system of support;, (c) incorporating a participative approach to contextual analysis, supports planning and provision, and quality assessment; (d) using evidence-informed decision making; and (e) implementing a quality improvement process
Use a Holistic Approach to Human Functioning
A holistic approach to human functioning such as that depicted in Tables 1–3 encompasses a social-ecological model of disability, an emphasis on human capacities and their development, the multidimensionality of human functioning, the human and legal rights of people with ID, the recognition that disablement may result from personal and environmental factors, and the need for contextual understanding and cultural competence in implementing a system of supports. This holistic approach incorporates the influence of international covenants on human rights (United Nations, 2006), positive psychology (Shogren, Wehmeyer & Singh, 2017; Wehmeyer, 2013), the emphasis on creating capabilities and inclusive policies (Nussbaum, 2011), the recognition of the multidimensionality of human functioning (Luckasson & Schalock, 2013), the need for contextual and cultural sensitivity (Schalock & Luckasson, 2014), and the quality of life movement (Schalock & Keith, 2016).
Employing a holistic approach to human functioning influences a number of policies and practices that promote system responsiveness. First, the adoption of a contextual analysis process to guide supports planning encourages a system-wide emphasis on personal goals and a recognition of the role of independent and intervening contextual variables in selecting the most effective support strategies. This process will increase the individual's interest, motivation, involvement, and sense of ownership over goals and supports—a central aspect of promoting self-determination. Second, the incorporation of a capacities, strength-based approach to disability that emphasizes the potential of all people to grow and develop will increase options for the individual. Third, the alignment of person-centered goals to specific support strategies and valued outcome categories will create a framework for outcomes evaluation and the establishment of best practices and evidence-based practices (Schalock, Gomez, Verdugo, & Claes, 2017).
Provide a System of Supports
The supports paradigm and the provision of individualized supports has become the primary service delivery mechanism throughout much of the world (Mpofu, 2016; Stancliffe, Arnold, & Riches, 2016; Thompson et al., 2014). The supports paradigm brings together the resulting practices of person-centered planning, personal development and growth opportunities, community inclusion, self-determination, and empowerment. It does so by (a) stressing that any person-environmental mismatch that results in needed supports can be addressed through the judicious use of individualized support strategies rather than focusing on “fixing the person”; (b) shifting the focus of services and supports to bridging the gap between “what is” and “what can be”; and (c) approaching individuals with ID on the basis of their type and intensities of support needs rather than on the basis of their limitations or diagnosis.
Providing a system of supports begins by determining the support needs of the individual and addressing those needs though one or more elements of a system of supports that are summarized in Table 5 (adopted from Lombardi et al., 2017; Schalock, Luckasson, Tasse, & Verdugo, in press). The integration of an understanding of context into a system of supports framework provides the opportunity to understand more fully how to individualize the system of supports based on the independent and intervening variables and context-based facilitators and inhibitors of change identified in Step 1.
Incorporate a Participatory Process
The context of an individual includes multiple environments reflecting where they live, work, are educated, and recreate. Each environment contains expectations regarding personal needs, resources in terms of supports, and perceptions of disability and the potential of persons with a disability. Thus, a system's responsibility is to include multiple stakeholders, including the person with ID, who are knowledgeable of those environments when conducting a contextual analysis and planning, implementing, reviewing, and evaluating policies and practices that effect a person's life. Different systems, including natural support organizations, will have varying amounts of time, expertise, and competing demands. As such, there will be a need for a focus on planning, coordinating, and working jointly to understand each person's context, and the personal characteristics that shape who they are, their goals for the future, and the most effective supports. The long-term benefits of such a process have the potential to benefit all members of a community, including people with intellectual disability.
Incorporating a participatory process has a number of advantages. First, in addition to the person, other people who have the most direct knowledge of the contextual factors influencing personal outcomes (such as family members, educators, support staff) are involved. This collective and collaborative knowledge increases the wisdom of support teams and the validity and precision of their decisions and recommendations. Second, a participatory process increases the capacity of the support team for self-critique, self-determination, and systematic inquiry at the level of the individual and system. Third, a participatory process enhances systems-level learning and facilitates continuous quality improvement and system transformation (Cousins & Chouinard, 2012; Lee, 2016; Schalock et al., in press). Fourth, using a participatory process introduces safeguard by empowering those with ID to communicate about the use of contextual analysis and keep it focused on practical, implementable solutions that enhance personal outcomes.
Support teams provide a viable mechanism to incorporate participation into the personal support plan process. The team is composed of the individual for whom the plan is being developed, members of the individual's family and social networks, involved teachers or direct support staff, a supports coordinator, and relevant professionals. A support team is characterized by its being involved, informed, organized, accountable, and empowered (Schalock & Luckasson, 2014; Schalock & Verdugo, 2012). In this process, a particular focus will need to be on empowering people with ID, their families, and supporters in the community to play meaningful roles and promote a focus on the community needs and vision, keeping the focus on personal outcomes rather than systems processes or needs.
Use Evidence-Informed Decision Making
Research-based information, as well as professional judgment, is used in Step 2 to select supports strategies aligned with contextual factors. System personnel need to remain abreast of innovations in supports by engaging in ongoing evaluations of literature-based support strategies that they determine would likely successfully address the identified context-based influencing factors. Further, communicating this information in way that is accessible and meaningful to people with ID, their families, and community members will be critical to retain a participatory, person-centered focus. Following, we present four guidelines for connecting the dots between research and practice, and thereby increasing the probability that data-based strategies are selected (Schalock et al., 2017).
The support strategy should be clearly defined. Related questions to ask regarding a potential strategy include: what is the strategy, how was it implemented, who implemented it, who was the strategy focused on, and what was its intended outcome? The degree to which there is strong fit with the person's context must also be considered.
The targeted outcome following implementation of the respective support strategy needs to be clearly described. Related questions include: what was the intended outcome, how does this outcome benefit the person, and how was the outcome measured? Also, does this outcome align with the personal goals of the individual?
The data presented need to show a clear and significant relation between the support strategy and the outcome.
A description of the systematic approach used to determine whether the strategy in question is evidence-based is essential. The six steps researchers use to establish whether or not a strategy is evidence-based are (Claes, Ferket, Vandevelde, Verlet, & DeMaeyer, 2017; Schalock et al., 2017): (a) agreeing on the perspective of evidence, (b) defining the strategy operationally, (c) selecting outcome indicators, (d) gathering evidence, (e) establishing the credibility of the evidence, and (f) evaluating the relation between the strategy and the outcome. Support providers need to pay special attention to steps e and f.
Implement a Quality Improvement Process
We define quality improvement (QI) as an integrative, sequential, and participatory process that is based on best practices and actionable information, and whose primary purpose is to strengthen a system's responsiveness. In reference to the building context model described in this article, QI involves the assessment of the degree to which system responsiveness indicators are evident in the approach the system takes to planning, implementing, reviewing, and evaluating person-centered and context-based support strategies. A framework to assess the quality of this process is presented in Appendix A. The assessment operationalized in Appendix A results in a profile of the pattern and intensity of the evidence of system responsiveness indicators. System personnel can then use the profile to: (a) identify strengths and weaknesses in how they incorporate contextual factors into their policies and practices, and (b) modify current policies and practices to increase the thoroughness of the contextual analysis; better align support strategies to personal goals, assessed support needs, and personal outcome domains; and implement support strategies that are relevant to the person, strengths-based, flexible, and timely. People with ID, their families, and community members must be part of this ongoing process of evaluation and QI.
Implications of Strengthening System Responsiveness
We have discussed how a system's responsiveness can be strengthened through a building context model that involves conducting a contextual analysis, selecting support strategies that address independent and intervening variables, and using system responsiveness indicators to assess the quality of the system's responsiveness. In the article we have asserted that enhanced human functioning and personal outcomes result from using the model to align support strategies to contextual factors and implementing context-based strategies through policies and practices that reflect the key role that context plays in enhancing human functioning and promoting valued outcomes. This concluding section of the article discusses five important implications of building contexts that enhance human functioning and promoting valued outcomes for people with ID.
First, taking the time to fully understand the context-based independent and intervening variables that impact human functioning and personal outcomes allows supporters to better target the contextual factors influencing human functioning and valued outcomes. Such understanding extends beyond the information typically obtained from traditional professional assessments.
Second, the use of contextual analysis encourages system personnel and people with disabilities, their families, and community members to engage in “contextual thinking” and “contextual action.” It is important for these persons to conduct contextual analyses routinely to determine on an on-going basis what factors hinder change and which factors facilitate change and to align an individual's personal goals and assessed support needs that may also change over time to culturally relevant elements of a system of supports. The information obtained from an on-going contextual analysis ensures that contextual thinking and action are “built into” a system's responsiveness.
Third, the participatory process used in the contextual analysis, the personal support plan process, and the assessment of the quality of the system's responsiveness will enable individuals and their families to be more actively involved in the development of personal support plans that incorporate contextual analyses, supports planning and provision, and opportunity development. This in turn will increase their rightful ownership of the education and/or rehabilitation process, and increase self-determination, equity, inclusion, and empowerment.
Fourth, the successful application and use of the system responsiveness indicators (see Table 4 and Appendix A) will enhance understanding of the influence that contextual factors have on human functioning and personal outcomes. More specifically, the clear identification of indicators that reflect a system's responsiveness, and how well the system incorporates actions associated with those indicators vis-a-vis the quality improvement process described, will facilitate that process.
Fifth, once we have consensus on system responsiveness indicators their use in research and classification can evolve. Context is important in every society, and thus studying context cross-culturally will facilitate the use of contextual factors that enhance system responsibility globally and facilitate systematic inclusion of context in global policies and practices.
In conclusion, the focus on strengthening a system's responsiveness is aligned with current disability policy that is attempting to address many of the rapid changes that are occurring in the field of ID. Disability policy is increasingly focusing on advancing personal outcomes by using strategies or approaches that are person-centered and incorporate the holistic nature of each person's life and employing support strategies that are context sensitive and evidence-based (Shogren, Luckasson, & Schalock, 2017; Turnbull & Stowe, 2017). The model described in this article to build context and strengthen system responsiveness is consistent with this current policy focus and provides an effective approach to building context to enhance human functioning and valued personal outcomes.