Public policy and outcomes for persons with intellectual disability: extending and expanding the public policy framework of AAIDD's 11th Edition of Intellectual Disability: Definition, Classification, and Systems of Support.

03Original abstract

In 2010, the American Association on Intellectual and Developmental Disabilities (AAIDD) published the 11th edition of its terminology and classification manual of intellectual disability (formerly “mental retardation”) titled Intellectual Disability: Definition, Classification, and Systems of Support (Schalock et al., 2010). Before publication, members of the AAIDD Ad Hoc Committee on Terminology and Classification published a series of five articles between 2007 and 2009 to share the committee's thoughts and seek input from the field on critical issues associated with terminology, definition, and classification. These articles focused on the shift from the term mental retardation to intellectual disability (Schalock et al., 2007), the construct underlying the term intellectual disability (Wehmeyer et al., 2008), the support needs of people with intellectual disability (Thompson et al., 2009), unique issues encountered by individuals with higher IQs (Snell et al., 2009), and the application of the 2010 AAIDD system to public policy (Shogren et al., 2009).The purpose of the present article is to expand on the last article in the series (Shogren et al., 2009) and the public policy chapter (Chapter 13) in the manual (Schalock et al., 2010). Hereinafter, we refer to the public policy framework in both sources as the “AAIDD manual's public policy framework.” The AAIDD manual's public policy framework rests in part on policy analyses conducted by this article's second author (Turnbull, Beegle, & Stowe, 2001; Turnbull & Stowe, 2001b; Turnbull, Wilcox, Stowe, & Umbarger, 2001). By merging the work of the manual's authors (Schalock et al., 2010; Shogren et al., 2009) and Turnbull and colleagues, we hope to extend and expand on the manual's public policy framework and further the field's ability to understand the dynamic relationship among public policy, practice, and outcomes.The basic theses of the manual's public policy framework (Schalock et al., 2010) are that there is an interactive relationship between public policy and practice and that various factors affect and are affected by policy and practice. Among the multiple inputs to public policy are social factors (including, social and political movements, attitudinal changes, legal rulings, statutory changes, participatory research and evaluation frameworks, and advances in research), core concepts of disability policy, and changing conceptualizations of disability. These core principles are person-referenced (e.g., self-determination, productivity, and contribution) and system-referenced (e.g., supports/service delivery), and they define desired policy outcomes in four areas: personal, family, societal, and systems change. The desired policy outcomes underscore why clinical functions such as diagnosis and classification are not ends in and of themselves but, when aligned with the provision of individualized supports, facilitators of desired outcomes.In addition, as depicted in Figure 1 (Schalock et al., 2010, p. 181), the social context and multiple systems within which individuals function shape the inputs, public policy and practice, and the desired outcomes. Individuals live, learn, work, and play in multiple systems, each of which has implications that evolve and change over time. These systems include the immediate social setting (e.g., the individual and their family; i.e., the microsystem); the neighborhood, community, and organizations providing supports/services (the mesosystem); and the overarching patterns of culture and society (the macrosystem).Turnbull and colleagues (Turnbull, Beegle, et al., 2001; Turnbull & Stowe, 2001b; Turnbull, Wilcox, et al., 2001) have identified core concepts of disability policy; their work influenced the manual's framework. To develop the core concepts of disability policy, Turnbull, Beegle, and Stowe (2001) analyzed 32 disability-related federal statutes, 48 decisions of the U.S. Supreme Court, and 11 precedent-setting decisions of lower federal courts and state supreme courts. Based on this analysis, they developed a matrix listing and defining the core concepts and citing the statutory or case-law sources of each concept.To confirm their findings, Turnbull, Beegle, and Stowe (2001) used the following procedures. First, they distributed the matrix to 24 individuals who had disability advocacy experience at the federal and state levels or were federal or state legislators or leaders of executive agencies; thereafter, they conducted interviews and focus groups with these individuals, asking them to confirm, modify, explain, exemplify, or reject the core concepts. Second, they conducted focus groups or individual interviews with 20 disability policy researchers and 47 individuals in two states (Kansas and North Carolina) who were family members, state legislators, state–local agency administrators, and service-providing professionals. Third, they conducted focus groups with 17 health policy experts. A total of 108 individuals served as respondents in these three steps. Fourth, Turnbull and his colleagues revised the matrix and distributed it and transcripts of the interviews to the respondents and asked them to confirm, modify, delete, or add to the matrix. Last, they amended the matrix to reflect the document analyses and responses of the 108 individuals.The final matrix consisted of 18 core concepts categorized into nine overarching principles (Turnbull, Wilcox, Stowe, & Umbarger, 2001). To assure that the matrix reflected current policy, Turnbull and his colleagues have updated it after each disability-related decision of the Supreme Court and Congress' enactment of new or amendments of federal statutes (Turnbull, Stowe, & Klein, 2010). They have not found any reason to modify the original core concepts even though the court has reinterpreted some and Congress has “restored” the original intent of at least one of the statutes included in the original analyses, the Americans with Disabilities Act, and reauthorized another key one, the Individuals with Disabilities Education Act. Table 1 identifies and defines each of the core concepts.Because a simple listing of core concepts does not reveal the degree to which they support each other, Turnbull and his colleagues argued that the 18 core concepts represent 9 overarching principles: constitutional principles of life, liberty, and equality; ethical principles of dignity, family as foundation, and community; and administrative principles of capacity, individualization, and accountability. Collectively, these three categories compose a taxonomy of the core concepts (Turnbull & Stowe, 2001b). Figure 2 displays 18 core concepts, the 9 principles, and the 3 categories.Beyond directly identifying the core concepts as an input to public policy and practice, the manual's authors (Schalock et al., 2010) have indirectly described additional links between their public policy framework and the core concepts. In this section, we identify links between the core concepts listed in Table 1 and the manual's policy framework. Making the links explicit is the first step in merging and aligning these two perspectives to extend and expand the AAIDD framework.Schalock et al. (2010) emphasize in the manual the “ecological perspective” and assert that the policy context, which is a type of ecology, “exerts a significant influence…on people with intellectual disability” and on “practice and assumptions in the field” (p. 171). In particular, policy profoundly affects “diagnostic and classification schemes” and “processes” (p. 171). The diagnostic and classification schemes and processes are manifest in the core concept of classification.Schalock et al. (2010) continue by explaining that the “synergy between public policy” and classification “lead[s] to an increased recognition of the importance of individualized supports,” “self-directed funding, person-centered planning, and home-based supports” (p. 171). The related core concepts, respectively, are individualized appropriate services, autonomy and empowerment/participatory decision making, service coordination and collaboration, integration and, arguably, family-centered services, family integrity and unity, and cultural responsiveness.In addition, Schalock et al. (2010) attribute “changes in public systems” to “socio-political movements” (p. 172), including deinstitutionalization (the core concepts are antidiscrimination and integration) and self-advocacy (the core concepts are autonomy and empowerment–participatory decision making). They also attribute the changes to “legal rulings” and “statutory changes” (p. 172), with these being the most fundamental sources of Turnbull and colleagues (Turnbull, Beegle, et al., 2001; Turnbull & Stowe, 2001b; Turnbull, Wilcox, et al., 2001) analyses.One consequence of linking the manual's (Schalock et al., 2010) framework and the core concepts from Turnbull and colleagues (Turnbull, Beegle, et al., 2001; Turnbull & Stowe, 2001b; Turnbull, Wilcox, et al., 2001) is that this link further strengthens the ability of the manual's framework to provide conceptual guidelines for developing public policy. The constitutional principles state, in the broadest of terms, professionals' legal obligations and, it is hoped, aspirations. The ethical principles state moral, not legal, ideals and aspirations that one hopes professionals share. The constitutional and ethical principles are, therefore, beacons for what public policy should be. Thinking of these principles as “inputs” to public policy provides specific guidance on the underlying principles that should guide all policy development.The second consequence of linking the manual's (Schalock et al., 2010) framework and the core concepts is that the link provides a solid basis for describing the ideals of professional practice. The constitutional and ethical principles address the issues of “why” and “why not” in public policy. When best practices related to diagnosis, classification, and planning supports are developed from these constitutional and ethical principles, professionals have access to practices grounded in the legal and moral aspirations of public policy. In addition, the administrative principles provide further input on the “how” and “who” in professional practice They call professionals' attention to their obligations to develop their and their clients' capacities, individualize their supports/services to benefit their clients, and submit to accountability standards and procedures. The administrative principles are fundamentally directed at how professionals should practice.A third consequence derives from the acknowledgment by Schalock et al. (2010) of the role of “changes in ideology and knowledge regarding the nature of disability” and “attitudinal changes” (p. 172) and “societal attitudes” (p. 174). In this respect, the framework in the manual asks the reader to think about how policymakers and professionals have thought about—how they have conceptualized and approached—the condition of intellectual disability. That, too, is a matter to which the core concepts research relates.The manual's (Schalock et al., 2010) framework and core concepts of Turnbull and colleagues (Turnbull, Beegle, et al., 2001; Turnbull & Stowe, 2001b; Turnbull, Wilcox, et al., 2001) reveal that one way to think about intellectual disability is from a legal/public policy perspective. That perspective, however, has cognate perspectives that are directly and indirectly acknowledged in the manual's framework. These perspectives relate to how professionals and policy leaders conceive of intellectual disability and policy affecting those with that disability. Turnbull and Stowe (2001a) have described five models for how people think about disability policy: public studies, human capacity studies, cultural studies, ethical and philosophical studies, and technology studies.For example, Schalock et al. (2010) acknowledge the influence of practice and support/service organization and funding. This suggests a larger perspective at work, one that includes at least the disciplines of law, economics, and public administration. Turnbull and Stowe (2001a) have characterized the larger perspective as the public studies model. This model is concerned with the relationship between government and individuals and regards disability as a condition that should evoke a positive response by the government (e.g., a positive right to appropriate supports and services) and a right not to be discriminated against in the provision of those supports and services (e.g., a negative right to be free from discrimination).Another model is human capacity studies (Turnbull & Stowe, 2001a). The human capacity studies model is concerned with how humans develop and the medical, psychological, and educational submodels that support human development. In the manual's framework, the human capacity model is embedded in the discussion of the “multidimensional framework of human functioning/supports paradigm” (Schalock et al., 2010, p. 173).By referring to the importance of “attitudes” and “attitudinal changes,” Schalock et al. (2010) invoke two other models (Turnbull & Stowe, 2001a). The first is the cultural studies model. This model reflects how literature, histories, and the arts (theatre, painting, and sculpture) portray individuals with disabilities. The second is the ethical and philosophical which what is right or in how policy and and individuals with by in that have to including and Schalock et al. p. 172) acknowledge the the in which human technology and technology (e.g., and play a role in human and changes in public consequence of this of the manual's framework and Turnbull et is that professionals be to the to and supports in disability from multiple model is to to disability and its consequence is to professionals to be of the model that they most on and to expand their to include multiple The the professionals to policy and practice, the is their ability to policy and in practice, including in the provision of individualized Last, the manual's be to the personal, family, and systems change outcomes that the framework when they acknowledge that there is one way to policy and practice and one in which they depicted in Figure outcomes identified in the manual's (Schalock et al., 2010) framework represent the most current and research on individual of The outcomes relate to self-determination, and Schalock et al., 2010, p. are, however, other to outcomes as by disability policy. categories from the significant and the Americans with Disabilities Act, the for Individuals with Disabilities Act, the Individuals with Disabilities Education Act, and the Act. these statutes four for individuals with and the manual's (Schalock et al., 2010) framework and related AAIDD to include these explicit the link between public policy and desired policy outcomes. 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Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.5.375