Abstract

This article provides a framework for an integrated approach to disability policy development, implementation, and evaluation. The article discusses how a framework that combines systems thinking and valued outcomes can be used by coalition partners across ecological systems to implement disability policy, promote the effective use of resources, incorporate specific support strategies that advance identified disability policy goals and lead to systemic changes and enhanced personal outcomes, and focus on activities that advance a unified vision for disability policy and the attainment of personal outcomes. The article concludes with a discussion of the significant challenges and opportunities regarding an integrated approach to disability policy in a time of change.

Developing, implementing, and evaluating disability policy is a dynamic process, particularly given the rapid changes that are occurring in the field of intellectual and developmental disabilities. Disability policy requires a focus on advancing personal outcomes using strategies and approaches that are person-centered, incorporate the holistic nature of each person's life, are context sensitive and supports based, and reflect the emerging consensus on desired policy goals and outcomes. As such, an integrated approach is needed to align the inputs (disability policy goals), throughputs (interventions, services, and individualized support strategies), and personal outcomes, while recognizing the factors that influence policy development, implementation, and evaluation.

The purpose of this article is to provide a framework for an integrated approach to disability policy development, implementation, and evaluation. Such a framework has the potential to unite the field around common disability policy goals. In addition, it has the potential to promote the effective use of resources, incorporate specific support strategies that can be used to advance identified disability policy goals, lead to systemic changes and enhanced personal outcomes, and focus activities that advance a unified vision for disability policy and the attainment of personal outcomes. Subsequent sections of the article: (a) define policy and disability policy; (b) describe in further detail an integrated approach to disability policy; (c) discuss how a framework that combines systems thinking and valued outcomes can be used by coalition partners across ecological systems to implement and evaluate disability policy; and (d) identify the significant challenges and opportunities regarding an integrated approach to disability policy in a time of change.

Policy and Disability Policy

Policy

Merriam-Webster defines policy as “prudence or wisdom in the management of affairs” or “a definite course or method of action selected from among alternatives and in light of given conditions to guide and determine present and future decisions” (2016). As these definitions highlight, policy provides guidance for taking action toward goals. From our perspective, and building on these definitions, policy can be understood broadly. It is not simply high-level actions of federal or state government, but instead also includes legal cases, rulings, statutes, treaties, and regulations and guidelines, as well as many other actions undertaken at any level to advance a policy goal. Specific actions and strategies to address policy goals can take many forms, ranging from promoting changes in a school policy related to the inclusion of students with disabilities to the development of international conventions, such as the Convention on the Rights of People With Disabilities (United Nations, 2006), to supporting the development of new laws or regulations to advance state- or federal-level policy goals or the establishment of case law through legal means. Essentially, the actions undertaken to achieve policy goals can vary across the contexts and levels at which a person is working to advance policy goals. An integrated approach to disability policy has the potential to create a unifying vision for those working to act with “prudence or wisdom” when selecting a “course or method of action.”

Disability Policy

Disability policy has a specific focus, namely advancing personal outcomes for people with disabilities. Within our proposed integrated approach, disability policy also provides direction for policy development, implementation, and evaluation by aligning policy goals with personal outcome domains, factors that influence outcome domains, support strategies that enhance outcome domains, and personal outcome indicators that guide policy evaluation. Although we acknowledge the importance of equality of opportunity and fair resource allocation, an integrated approach to disability policy focuses on aligning outcomes-focused policy development, implementation, and evaluation.

Integrated Approach to Disability Policy

The integrated approach to disability policy described in this article has five components: (a) disability policy goals, (b) personal outcome domains, (c) factors influencing personal outcome domains, (d) support strategies to enhance the outcome domain, and (e) outcome domain indicators to guide evaluation. As highlighted previously, disability policy goals provide the direction and driving force for action that enables systems change, the adoption of organization- and systems-level policies and practices linked to the policy goals, and the implementation of other supports strategies at the personal and community level linked to the outcome domains. The personal outcome domains provide an operational definition of the respective policy goals and, thereby, provide the focus/target for interventions, environmental modifications, and supports; the factors influencing personal outcome domains represent contextual variables that either facilitate or hinder the interventions and supports. The support strategies include the elements of systems of supports that are used by educators, rehabilitation providers, health care personnel, and community and family support providers to address the factors influencing personal outcome domains. The use of these strategies enhances personal outcomes and facilitates desired policy outcomes. The outcome domain indicators provide the framework for disability policy outcome evaluation and the determination of the respective policies' effectiveness.

The alignment of these five components, as shown in Table 1, enables an integrated approach that can be applied across contexts beginning with understanding and working from the disability policy goals and outcome domains, identifying contextual factors that have the potential to impact implementation of supports, identifying and implementing supports that will advance the policy goals, and evaluating the impact on indicators of disability policy goal achievement. A description of each of these components is presented next.

Table 1

Integrated Approach to Disability Policy: Development, Implementation, and Evaluation

Integrated Approach to Disability Policy: Development, Implementation, and Evaluation
Integrated Approach to Disability Policy: Development, Implementation, and Evaluation

Disability Policy Goals and Associated Personal Outcome Domains

As listed in Table 1 (column 1) we have recently identified three broad disability policy goals based on the synthesis of international literature and disability documents (Shogren, Luckasson, & Schalock, 2015). These three goals are to promote human dignity and autonomy, personally satisfying human endeavor, and human engagement. Personal outcome domains were aligned with each policy goal based on published work by Bradley and Moseley (2007), Gomez and Verdugo (2016), Schalock et al. (2010), and the Council on Quality and Leadership (2010). The goals and associated outcome domains provide the input to the integrated approach, providing a unified vision, clear values, and outcome domains that can be targeted to specific interventions, services, and individualized systems of supports.

Factors Influencing Outcome Domains

Based on a second systematic review of education and rehabilitation literature (references provided in Shogren et al., 2015), we identified contextual factors that influence each personal outcome domain and, in a subsequent article (Shogren, Schalock, & Luckasson, in press), we discussed the role of these contextually based influencing factors in driving valued outcomes at the micro-, meso-, and macro-system levels, recognizing that different factors shape policy outcomes across the person and family system, community context, and within society and culture. The microsystem includes the individual, their family, and close associates; the mesosystem includes the organization providing services and supports and the communities within which people live, work, and recreate; and the macrosystem includes the larger service delivery system and society. Each of these levels influences outcomes, but different support strategies will be required at each level.

Actions to advance the policy goals across the three ecological levels will also vary. Thus, in working to implement policy to advance the disability policy goals across the three levels, stakeholders will need to consider the factors that influence their methods of actions, consistent with the definition of policy. These influencing factors are presented in Table 1 (column 3). Stakeholders will need to consider specific influencing factors for their unique contexts, and use this knowledge to shape the supports utilized to advance disability policy goals.

Support Strategies to Enhance Outcome Domains

There is extensive literature regarding the essential role that the supports paradigm plays in implementing an integrated approach to disability policy (Stancliffe, Arnold, & Riches, 2016; Thompson, Schalock, Agosta, Teninty, & Fortune, 2014). Specifically, the supports paradigm has brought together the practices and values of person-centered planning, personal development and growth opportunities, community inclusion, self-determination, empowerment, and outcomes evaluation. The impact of the supports paradigm on disability policy in a time of change is that it: (a) stresses that a person-environment 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 ) shifts the focus of supports to bridging the gap between “what is” and “what can be”; (c) approaches people on the basis of their types and intensities of support needs rather than on the basis of their limitations or diagnosis; and (d) provides for a comprehensive system of supports whose elements include natural supports, technology, education and training, environmental accommodation, incentives, personal strengths, and professional and community services (Nussbaum, 2011; Schalock & Luckasson, 2014; Thompson et al., 2009).

In Table 1 (column 4) we list exemplary support strategies that can enhance each of the associated personal outcome domains. These exemplary strategies are based on those proposed by the National Goals Project (Hewitt, Heller, & Butterworth, 2015), and those identified in the published literature (Schalock & Luckasson, 2014; Shogren, Wehmeyer, & Singh, 2017; Stancliffe et al., 2016; Thompson et al., 2014). The support strategies listed in Table 1 are not meant to be an exhaustive listing, only an exemplary one that can stimulate the thinking of various stakeholders working within their context to identify ways to impact personal outcome domains to enhance personal outcomes, considering influencing factors.

Outcome Indicators to Guide Evaluation

Outcome evaluation, the fifth characteristic, involves the measurement of selected outcome indicators associated with each personal outcome domain. Outcome indicators are used as measures of domain-referenced policy outcomes that guide policy-related evaluation. A listing of exemplary personal outcome domain indicators is presented in Table 1 (column 5).

As discussed by Gomez and Verdugo (2016), disability policy-related outcomes evaluation requires a well-formulated and validated conceptual model that aligns policy goals with personal outcome domains and indicators, culturally sensitive indicators, a standardized scoring metric, acceptable psychometric properties, and standardized administration and scoring procedures. In addition, the process includes the standards used to evaluate the obtained information and how the information can be used to inform policy makers and contribute to evidence-based decision making (cf. Claes, Ferket, Vandevelde, Verlet, & De Maeyer, this issue; Schalock, Gomez, Verdugo, & Claes, in press).

In summary, an integrated approach to disability policy involves aligning disability policy goals with associated personal outcome domains, factors influencing those domains, support strategies that address those influencing factors, and outcome indicators that can be used to guide disability policy evaluation. The following section presents three guidelines and suggested strategies that can be used to implement the integrated approach across ecological systems.

Implementation Guidelines and Strategies

This section of the article describes how users of this integrated approach to disability policy can combine systems thinking with valued outcomes. Systems thinking brings focus to the multiple factors that influence policy implementation and systems of supports at the micro-, meso-, and macro-ecological system level. It also provides guidance for stakeholders at various levels to guide thinking and understanding of the interactive effect of factors across systems. As listed in Table 1 (column 2), valued outcomes are those associated with the personal outcome domains of self-determination, full citizenship, education/life-long learning, productivity, personal well-being, inclusion in society and community life, and development and support of human relationships. These valued outcome domains, organized within disability policy goals, provide guidance for stakeholders to identify the influencing factors (column 3) specific to their ecological system, and identify supports based on the targeted disability policy outcome. An advantage of this integrated approach is that effective coalitions can be built across ecological systems to ensure that effective supports that consider influencing factors are developed to promote valued outcomes and disability policy goals.

In Table 2, we provide an organizing guideline for each ecological system level, along with suggested strategies that can be used by coalition partners to implement an integrated approach to disability policy development, implementation, and evaluation. The guidelines and suggested strategies are based on the National Goals Project (Hewitt et al., 2015), Schalock and Luckasson (2014), Shogren et al. (2015), Shogren et al. (2017), and Thompson et al. (2014).

Table 2

Guidelines and Strategies to Implement an Integrated Approach to Disability Policy Across Ecological Systems

Guidelines and Strategies to Implement an Integrated Approach to Disability Policy Across Ecological Systems
Guidelines and Strategies to Implement an Integrated Approach to Disability Policy Across Ecological Systems

Significant Challenges and Opportunities

The integrated approach to disability policy described in this article enables stakeholders working across multiple systems to work individually and in broader coalitions to take action to develop, implement, and evaluate disability policy based on the framework presented in Table 1. The integrated approach introduced in Table 1 begins with disability policy goals and valued outcomes as an input, describes supports based on targeted outcomes as a throughput that considers influencing factors that are shaped by personal and societal contexts, and leads to outputs (e.g., systems change) and personal outcomes. Elements of such a framework have been introduced and adopted by those working in the disability field. However, the application of such an integrated approach in combination with systems thinking rarely occurs or is sustained. As such, there are both significant challenges and opportunities in the field. Herein, we highlight some key challenges and opportunities.

Outcome-Focused Policy

As described in this article, an integrated approach to disability policy sets clear goals for those working in the area of disability. Policy can be defined as a definite course or method of action selected from among alternatives and in light of given conditions to guide and determine present and future decisions. To select the “method of action” from alternatives, a clear vision and goals are need to drive the process. By synthesizing multiple national and international policies, policy documents, and implementation frameworks, we identified three broad goals of disability policy (human dignity and autonomy, human endeavor, and human engagement) that can serve as the clear vision and unifying framework for the field. In doing so, the field can move forward in building systems of supports to promote valued outcomes linked to the disability policy goals, progressing logically from goals to supports to influencing factors to outcomes. This enables a clearer understanding of how to move from policy goals to supports that consider contextual variables, and then to systemic changes to enhance valued outcomes. This logical sequence ensures good use of resources and a broad approach that incorporates multiple stakeholder groups.

Partnerships

A challenge in implementing an integrated approach to disability policy is the need to combine the approach with systems thinking that recognizes the multiple ecological systems that shape outcomes through unique influencing factors (Bronfenbrenner, 1979, 2005). Further, different stakeholders will target policy development, implementation, and evaluation at different levels of the system; policy implementation and evaluation occur in context. When using an integrated approach, it will be critical to focus on building partnerships across stakeholder groups (see Verdugo, Jenaro, Cavo, & Navas, this issue). Building coalitions to make changes at the personal, community, organization, and societal level to advance disability policy goals has the potential to enhance outcomes across systems. This will necessitate bringing a wider range of stakeholders together, recognizing the role of not only the person, family, and service system in building systems of support, but also the role of policy makers, broader community coalitions, social networks, various informal supports, and researchers.

Alignment of Disability Policy Development, Implementation, and Evaluation

The alignment of disability policy development, implementation, and evaluation requires a shared understanding of the meaning of policy, disability policy, policy development, policy implementation, and policy evaluation. To this end, we suggest the following operational definitions of each.

  • Policy: A statement of intent and a course or method of action that guides decision making. A policy includes the basic principles or core concepts that guide its development, the procedures or protocol used to implement the policy, and the policy-specific goals and associated desired outcomes.

  • Disability policy: Policy that has a specific focus on advancing personal outcomes for people with disabilities. Disability policy provides direction for policy development, implementation, and evaluation by aligning goals with personal outcome domains, factors that influence outcome domains, support strategies that enhance outcome domains, and personal outcome indicators that guide policy evaluation.

  • Policy development: The decision process by which individuals, groups, or institutions establish policies that align basic principles, procedures, or protocols, and policy-specific goals and associated outcomes.

  • Policy implementation: A multiple component process that includes (a) a legislative or agency basis (i.e., “written policy”); (b) a service/supports delivery structure; (c) a partnership network composed of policy makers such as people with disabilities and their families, politicians, rule makers, professionals, service/supports providers, researchers, and communities; and (d) a monitoring and evaluation system.

  • Policy evaluation: A structured approach for assessing personal, family, or societal changes or benefits (i.e., outcomes) that follow as a result or consequence of a specific policy. The process includes an evaluation model, evidence-based outcome indicators, evidence-gathering activities, the standards used to evaluate the obtained information, and how the information can be used to inform policy makers and contribute to evidence-based decision making.

Conclusion

Integrating disability policy development, implementation, and evaluation has the potential to unite the field around common disability policy goals and provide direction for change across multiple systems. This article provided an overview of an integrated approach to disability policy, including implementation strategies and challenges and opportunities to the field. For the disability field to advance personal outcomes aligned with disability policy goals, systematic attention is needed to implementing and evaluating strategies such as those described in Table 2 that lead to change in the personal outcome domain indicators described in Table 1. Doing so has the potential to lead to more person-centered and context-sensitive supports being provided that advance policy goals and create personally meaningful opportunities and outcomes for people with intellectual and developmental disabilities and their families.

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