The enormous effects of public policy—both for good and for ill—in the lives of people with intellectual disability and related developmental disabilities demand the development of stronger tools for policy analysis, and more effective strategies for policy implementation and evaluation. The purpose of this special issue is to help readers understand the complexities of disability policy and the factors that influence its successful development, implementation, and evaluation; and to encourage readers to expand their thinking and actions regarding the role they play in disability policy in a time of change.
The publication of this special issue of Intellectual and Developmental Disabilities on disability policy comes at a time when the field of intellectual disability and closely related developmental disabilities (IDD) is facing three realities. First, we are experiencing change and transformation not just in the field of IDD but also in the social-political environments within which people with IDD and their families live and service delivery systems operate. Second, there is an increasing need to evaluate how disability policy influences the lives and valued outcomes of persons with IDD. Despite the numerous policies that have been instituted to affirm the right to least restrictive environments, supported living and employment opportunities, and inclusive educational environments, the field both nationally and internationally continues to be challenged to demonstrate the existence of widespread valued outcomes for the majority of persons with IDD (AAIDD, 2016; Braddock et al., 2015; Hewitt, Heller, & Butterworth, 2015; Shogren, Schalock, & Luckasson, in press). Third, we have come to realize that disability policy is not simply high-level actions of federal, state, or regional governments. Rather, policy development, implementation, and evaluation occur across multiple entities, including legal cases, rulings, statutes, treaties, regulations and guidelines, and multiple and varied approaches by organizations and systems that affect social circumstances, access, educational opportunities, employment, housing, financial necessities, and the delivery of services and supports.
Adapting successfully to these three realities requires knowledge, creative thinking, planning, and action. “Policy” can be a concept that eludes analysis because it can fall so easily within the “I know it when I see it” trap. But the enormous effects of policy—both for good and for ill—in the lives of people with IDD and their family and friends demand that we develop stronger tools for its analysis, and more effective strategies for its implementation and evaluation. To that end, the purpose of this special issue is to help readers understand the complexities of disability policy and the factors that influence its successful development, implementation, and evaluation; and to encourage readers to expand their thinking and actions regarding the role they play in disability policy in a time of change. This overview article begins that process by (a) discussing the basics of policy development, implementation, and evaluation; (b) outlining the advantages of using a systematic policy framework; and (c) providing a common language to describe the key elements of IDD disability analysis/development, implementation and evaluation.
The Basics of Policy Development, Implementation, and Evaluation
Policy development is a dynamic process that is based on core concepts and principles, includes goal-related valued outcomes, and guides decision making. Three factors underlie this dynamic process. The first is to base policy on core concepts and principles such as those embedded in the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006). Articles within the convention address (a) rights (access and privacy); (b) participation autonomy, independence, and choice; (c) physical well-being; (d) material well-being (work employment); (e) social inclusion, accessibility, and participation; (f) emotional well-being (freedom from exploitation, violence and abuse); and (g) personal development (Claes, Vandenbusshe, & Lonbardi, 2016; Shogren & Turnbull, 2014; Verdugo, Navas, Gomez, & Schalock, 2012).
The second factor is to include desired policy outcomes in policy development so as to guide policy implementation and evaluation. As discussed by Turnbull and Stowe (this issue), including desired policy outcomes into a disability policy framework has the advantages of (a) providing a conceptual and empirical link among disability policy principles, legislative initiatives, and legal trends; (b) identifying associated interventions and supports; (c) aligning policy of goals to interventions and supports, and interventions and supports to outcomes; and (d) advancing outcomes-driven policy development (Turnbull & Stowe, 2014) and evidence-based policy making (Cairney, 2016).
The third factor underlying policy development is to incorporate current knowledge about disability generally, and intellectual disability (ID) specifically. Most knowledge about ID is embedded within four current perspectives: the medical, psychoeducational, sociocultural, and justice. A synthesis of these four perspectives has recently been conducted and a holistic theoretical approach urged (Schalock et al., in press). The synthesis resulted in the specification of the following five components with associated indicators: (a) explanation of ID, (b) locus of ID, (c) risk factors leading to ID, (d) interventions and supports for preventing or mitigating ID, and (e) a multi-dimensional approach to subgroup classification of individuals with ID. Knowledge based on this holistic theoretical approach extends beyond what is available singly within the four current perspectives on ID, and thus a holistic perspective can be used to organize relevant information to guide policy development.
Disability policy implementation involves aligning policy goals with specific interventions, services, and supports that are intended to enhance human functioning and maximize personal, family, or societal outcomes. Implementation is influenced by contextual factors that operate at the level of the microsystem (individual and family), mesosystem (organization and community), and macrosystem (jurisdiction and society). These contextual factors involve the approach taken to disability, the culture and nature of provider organizations and systems, the level and philosophy embedded in professional education and staff development, and a jurisdiction's social-political-fiscal environment (Schalock & Keith, 2016; Shogren, Luckasson, & Schalock, 2015; Shogren, Schalock, & Luckasson, in press). The alignment of policy goals with specific interventions, services, and supports is a critical component of disability policy implementation, and will be discussed more fully by Verdugo et al. (this issue).
In a general sense, policy evaluation is an explicit, planned step to determine the effect of a stated policy. More specifically, policy evaluation focuses on the assessment of personal, family, and/or societal changes (either positive or negative) that follow as a result of the interventions, services, and supports provided to those persons to whom the policy is directed (Gomez & Verdugo, 2016; Norton, Milat, Edwards, & Giffin, 2016; Schalock & Verdugo, 2012b). As described more fully in the article by Claes et al. (this issue), disability policy evaluation requires an evaluation framework and process, clear operational definitions, evidence-based outcome indicators, evidence-gathering strategies, evaluation standards, and the establishment of an organization or system's evaluation culture and capability
A Systematic Policy Framework
Disability policy development, implementation, and evaluation can best be approached from a systematic perspective that identifies critical input, throughput, output, and outcome factors that influence its effectiveness. The systematic policy framework referenced throughout this special issue is based on a logic model that enables policy makers and other key stakeholders to understand what must be done to achieve policy goals, and identifies critical factors and core processes that influence policy implementation and its evaluation.
Furthermore, a systematic policy framework (a) depicts underlying concepts, principles, and goals; (b) articulates and aligns the operative relations among inputs, throughputs, outputs, and outcomes relative to the policy; (c) identifies critical indicators to develop and monitor; (d) specifies the core processes that enhance organization and system performance; and (e) reduces the complexity of the policy to a workable conceptual and measurement framework, thereby allowing for a fuller understanding of the factors that impact the policy (Helitzer et al., 2010; Millar, Simeone, & Carnevale, 2001; Schalock & Verdugo, 2012a). The components of a systematic policy framework are presented in Table 1.
The Language of Disability Policy Development, Implementation, and Evaluation
A systematic policy framework requires expanded definitions of policy development, implementation, and evaluation. Language and terminology need to be consistent with the movements toward aligning policy goals, interventions and strategies, and valued outcomes and developing disability policy from an outcomes-driven perspective. To this end, Table 2 presents a summary of generic (column 1) and expanded (column 2) definitions for IDD policy development, implementation, and evaluation. Reflective of disability policy in a time of change, readers will find both types of definitions used in subsequent articles.
Generically, policy is 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” (Merriam-Webster, 2016). In reference to this definition, policy includes both the “law on the books” (i.e., legislation, regulation, and judicial decisions) and “law on the streets” (i.e., the ways in which public administrators (either individually or as entities) apply the law to the individuals or entities affected by it (Turnbull & Stowe, 2014). Consistent with the expanded definitions presented in Table 2, policy would be “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 action, the procedures or protocols used to implement the policy, and the policy-related goals and associated desired outcomes.
Takeaways From the Special Issue
All of the invited authors bring considerable policy-related experience and expertise to their respective articles. Their national and international reputations extend across service delivery systems (e.g., education and habilitation), age groups (children and adults), and diagnostic groups (intellectual disability, mental-behavioral health, and aging).
The authors anticipate that the material presented in these externally reviewed articles will result not only in a reconsideration of the focus and content of disability policy, but also new and expanded approaches to disability policy development, implementation, and evaluation. In that regard, the following are significant takeaways from each article.
As a result of this introduction, readers will have a better understanding of the basics of disability policy development, implementation, and evaluation; the components of a systematic policy framework; and the current and expanded terminology used to define policy and disability policy development, implementation, and evaluation.
As a result of reading the article by Turnbull and Stowe, readers will understand the distinction between a policy framework and a policy analysis model; the 12 steps involved in policy analysis, and the application of those steps to policy development, implementation, and evaluation; the distinction between legal formalism and legal realism; and the importance of different conceptualizations of IDD in policy analysis.
As a result of reading the article by Verdugo et al., readers will understand factors associated with successful policy implementation from a cross-cultural perspective. These include conducting a contextual analysis, employing a value-based approach, aligning interventions and supports vertically and horizontally, and entering into partnerships.
As a result of reading the article by Claes et al., readers will understand that policy evaluation involves an evaluation framework and process, clearly stated anticipated valued outcomes, evidence-based outcome indicators, evidence-gathering strategies, standards used to evaluate policy outcomes, and suggested multiple uses of policy evaluation results.
As a result of reading the article by Shogren et al., readers will understand the five components of an integrated approach to disability policy. These components are disability policy goals, personal outcome domains, factors influencing personal outcome domains, support strategies to enhance the outcome domain, and outcome domain indicators to guide evaluation.
As a result of reading the article by Luckasson et al., readers will understand the processes used by AAIDD and The Arc U.S. to develop, express, and evaluate ID policy, the policy content of current joint statements, and the role of organization position statements.
As a final takeaway, the articles within this special issue underscore the point that disability policy development, implementation, and evaluation involve an interactive relation between policy and practice. Three phenomena drive this interactive relation: social factors, the core concepts of disability policy, and the changing conceptions of disability. Social factors include social and political movements, attitudinal changes, judicial decisions, statutory changes, advances in research, and the prominence of outcomes evaluation. The core concepts involve those that are person-referenced (e.g., self-determination, empowerment, individualized supports, productivity and contribution, and family integrity and unity) and those that are systems-referenced (e.g., universal human rights, antidiscrimination, coordination and cooperation, and accountability). The major conceptions of disability are the wide acceptance of the multi-factorial etiology of disability, the social-ecological model of disability, and the demonstration that with appropriate supports over time, the life functioning of persons with disability will generally improve.
The intent of this special issue is to help readers understand these interactive relationships. In addition, it is our hope that readers will better understand the challenges regarding disability policy in a time of change, and develop a clearer picture of the critical roles they can play in its development, implementation, and evaluation.