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.

AAIDD Manual's Public Policy Framework

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).

Figure 1

Contextual factors in public policy. Reprinted with permission from Schalock, R. L., Borthwick-Duffy, S., Bradley, V., Buntix, W. H. E., Coulter, D. L., Craig, E. P. M., et al. (2010). Intellectual Disability: Definition, Classification, and Systems of Support. Washington, DC: American Association on Intellectual and Developmental Disabilities; Figure 13.2, p. 181. Copyright 2010 by the American Association on Intellectual and Developmental Disabilities.

Figure 1

Contextual factors in public policy. Reprinted with permission from Schalock, R. L., Borthwick-Duffy, S., Bradley, V., Buntix, W. H. E., Coulter, D. L., Craig, E. P. M., et al. (2010). Intellectual Disability: Definition, Classification, and Systems of Support. Washington, DC: American Association on Intellectual and Developmental Disabilities; Figure 13.2, p. 181. Copyright 2010 by the American Association on Intellectual and Developmental Disabilities.

Core Concepts of Disability Policy

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.

Table 1

Core Concepts of Disability Policy

Core Concepts of Disability Policy
Core Concepts of Disability Policy

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.

Figure 2

Taxonomy for core concepts. From Turnbull, H. R., and Stowe, M. J. (2001). A taxonomy for organizing the core concepts according to their underlying principles. Journal of Disability Policy Studies, 12, 177–197. Copyright 2001 by Sage Publications. Reprinted with permission.

Figure 2

Taxonomy for core concepts. From Turnbull, H. R., and Stowe, M. J. (2001). A taxonomy for organizing the core concepts according to their underlying principles. Journal of Disability Policy Studies, 12, 177–197. Copyright 2001 by Sage Publications. Reprinted with permission.

Links Between the Manual's Framework and the Core Concepts

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.

Consequences of Linking the Two Frameworks

Development of Public Policy

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.

Promotion of Best Professional Practices

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.

Advancement of Knowledge About Disability

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.

Models for Thinking About Disability

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 model, which expresses what is morally right or wrong in how policy and practitioners regard and treat individuals with disabilities.

Last, by acknowledging “advances in research” that have led to “more successful intervention,” including “new techniques and technologies,” Schalock et al. (2010, p. 172) acknowledge the technological model, the ways in which human technology (practice) and hard technology (e.g., assistive and rehabilitative technology) play a vital role in assuring human development and prompting changes in public studies.

One consequence of this alignment of the manual's framework and Turnbull et al.'s typology is that professionals may be more sensitized to the need to approach prevention and supports in disability from multiple mindsets. No single model is sufficient to respond to disability and its complexity. Another consequence is to force professionals to be self-aware of the model that they most rely on and to expand their thinking to include multiple models. The more holistic the approach professionals bring to policy and practice, the more diverse is their ability to advance policy and innovation in practice, including in the provision of individualized supports. Last, the manual's users will be more likely to advance the personal, family, social, and systems change outcomes that the framework seeks when they acknowledge that there is more than one way to conceptualize policy and practice and more than one ecology in which they may act (as depicted in Figure 1).

Influencing Public Policy Outcomes

Individual Outcomes

The eight personal outcomes identified in the manual's (Schalock et al., 2010) framework represent the most current thinking and research on individual quality of life. The outcomes relate to rights, participation, self-determination, physical well-being, material well-being, emotional well-being, and personal development (see Schalock et al., 2010, p. 176).

There are, however, other ways to broadly categorize personal outcomes as shaped by disability policy. Those categories derive from the nation's significant negative-rights and positive-rights statutes: the Americans with Disabilities Act, the Assistive Technology for Individuals with Disabilities Act, the Individuals with Disabilities Education Act, and the Rehabilitation Act. Together, these statutes express four goals for individuals with disabilities: equal opportunity, independent living, full participation, and economic self-sufficiency.

We recommend expanding the manual's (Schalock et al., 2010) framework and subsequent related AAIDD publications to include these goals, thereby making more explicit the link between public policy and desired policy outcomes. That link—that conceptual coherence—would not require the abandonment of the eight personal outcomes that the manual identified. Instead, it would subsume the outcomes under these four disability policy goals. In the first section of Figure 3, we provide a framework for subsuming the manual outcomes under the four goals of disability policy.

Figure 3

Disability policy goals, AAIDD manual (Schalock et al., 2010) framework person-referenced outcomes, and AAIDD legislative agenda primary domains and issues. 1Domains created by authors. 2These legislative agenda domains and issues are the foundation for the four goals of disability policy (i.e., they must be in place to achieve the four goals described above).

Figure 3

Disability policy goals, AAIDD manual (Schalock et al., 2010) framework person-referenced outcomes, and AAIDD legislative agenda primary domains and issues. 1Domains created by authors. 2These legislative agenda domains and issues are the foundation for the four goals of disability policy (i.e., they must be in place to achieve the four goals described above).

As shown in the first section of Figure 3, the goal of equal opportunity (expressing the core concept of antidiscrimination and the overarching principle of liberty) would subsume the manual outcome of “rights.” Similarly, the goal of independent living (expressive of the core concepts of autonomy) would subsume the manual outcome of self-determination. The goal of full participation would subsume the manual outcomes of participation, social inclusion, personal development, physical well being, and emotional well being. Last, the goal of economic self-sufficiency would subsume the manual outcome of material well-being.

Another consequence of linking the manual outcomes more explicitly to the four national policy outcomes is that AAIDD would be better able to justify, through a conceptual framework, the legislative agenda it articulates annually (in cooperation with other associations in the field of intellectual disability through the Disability Policy Collaboration (http://www.ucp.org/uploads/2009-2010_Leg_Agenda.pdf). Currently, the legislative agenda identifies major policy issues to be addressed by Congress in several domains: budget and appropriations, social security, family support, revenue and tax policy, emergency management, housing, employment, transportation, quality of services, technology, direct support workers, education, civil rights, developmental disabilities act, health care, research and prevention, Medicaid, and long-term services and supports.

These policy issues can be categorized under the four policy outcomes and, thus, the personal outcomes that the manual's framework has described. The rest of Figure 3 summarizes the major policy issues identified by AAIDD and the Disability Policy Collaboration and organizes them according to the four goals of disability policy and the manual outcomes.

Some of the AAIDD's major policy issues do not fit neatly into any of the four national policy outcome categories. That is because those issues concern funding/appropriations, research, and quality assurances. We regard these issues as cross-cutting; they relate to all four of the national policy goals. Thus, they are the foundation to or supportive of all of the goals of disability policy and are included at the bottom of Figure 3 as “foundational.”

We have also grouped together some of the issues into two new domains not included in AAIDD's original list of policy domains. The categories are (a) right to health care and community-based supports/services and (b) family cohesion. These broad categories make clear the connection between the AAIDD legislative agenda and the four national policy goals. Last, we have placed some of the AAIDD legislative agenda issues related to education and health care and community-based supports and services into the equal opportunity classification. We justify our classification of education-related issues into the equal opportunity grouping because Individuals with Disabilities Education Act rests on the equal protection guarantee of the 14th Amendment. We justify our classification of health-related issues into the equal opportunity grouping because one of the underlying principles of the recently enacted health care reform law is that there is a civil right to health care. We justify our classification of community-based supports/services–related issues based on the right to community integration articulated in the Americans with Disabilities Act and in the Olmstead decision. Last, we justify our classification of family-cohesion–related issues into the equal opportunity grouping because case law acknowledges that families have a broad right to make decisions and to remain intact (have their children remain in the family).

Individual and Collective Utilitarianism

A final consequence of merging the four national policy goals into the manual's framework is that the goals are both individually and collectively utilitarian. Individual utilitarianism seeks the greatest good for one person. Social utilitarianism seeks the greatest good for the largest number. Each depends on equal opportunity.

Without equal opportunity, an individual with a disability will experience undue restrictions in his/her opportunity to become independent (independent living), integrated (full participation), and productive (economic self-sufficiency). Equal opportunity, then, is utilitarian for the individual.

Each goal is also utilitarian for the public in terms of lower cost of disability-related supports and services, greater social diversity and pluralism, and higher financial productivity. In an era when disability-support policies are aggressively challenged by federal and state fiscal realities, social utilitarianism becomes a powerful weapon for protecting the supports model that AAIDD articulates in the current manual (Schalock et al., 2010).

Yet another consequence is that the four disability policy goals express constitutional and ethical principles. The policy outcome of equal opportunity and its core concept of antidiscrimination advance the constitutional (5th and 14th Amendments) principle of equality, which in turn is necessary to advance the constitutional principles of life and liberty and the ethical principles of dignity, family, and community. This then relates to the AAIDD framework of person-referenced outcome of rights. Similarly, the policy outcome of independent living and its core concept of autonomy reflect the constitutional principle of liberty, the ethical principle of dignity, and the person-referenced outcome of self-determination. Full participation mirrors the core concept of integration and the constitutional principle of life, understood to be quality of life (a vital element of the manual's framework) and the ethical principle of community, which are linked to the person-referenced outcomes of participation, societal inclusion, personal development, physical well-being, and emotional well-being. Last, economic self-sufficiency rests on the core concept of productivity and contribution, the overarching constitutional principles of liberty and life, and the ethical principle of dignity, all of which relate to the person-referenced outcome of material well-being.

System Outcomes, Core Concepts, and Three Overarching Administrative Principles

As we noted above, the constitutional and ethical principles are aspirational: They express hoped-for approaches in disability policy. The constitutional and ethical principles become operational only when the administrative principles support them. The why and why not of the constitutional and ethical principles necessarily are empty absent the how and what of the administrative principles. The manual's (Schalock et al., 2010) public policy framework recognizes this when it asserts that “systematic application of individual supports can enhance human functioning and personal outcomes” (p. 171).

Collectively, 12 core concepts reflect three administrative principles. They are capacity, individualization, and accountability, as depicted in Figure 2. Capacity refers to the capacity of the service delivery system to act in accordance with the constitutional and ethical principles and the core concepts they subsume. Capacity also refers to professionals' obligation to construct and implement supports and services that account for and build on the inherent strengths of the individual with a disability. Accordingly, capacity values both individual and social utilitarianism. Individualization makes supports/services effective for the individual and the person's family and for society. Last, accountability assures that service system and professionals within it discharge their obligations effectively, efficiently, and legally. It seeks social utilitarianism in service of individual utilitarianism.

Influencing Factors

The manual (Schalock et al., 2010) correctly argues that “the relationship between public policy and practice is interactive” (p. 180) and, in support of that point, proffers three “inputs” to public policy and practice: social factors, core concepts, and changing conceptualization of disability. A word or two about these factors seems to be in order.

Role of the Five Models of Disability

The five models of how we think about disability (human development, public policy, culture, technology, and ethics) subsume some of the social factors. How a person with a disability experiences human development depends in large part on the effectiveness of contributions from professionals in the fields of medicine, psychology, and education. These contributions are authorized and financially supported by elements of the public studies model, especially law and economics. Societal evaluations of the “worthiness” of individuals to receive publicly funded supports and services depend in part on the cultural portrayals of those individuals. The technologies, both human and constructed, equally advance human development even as they shape public policy; and the ethical model has been vitally important to the policy reformers who early on spearheaded and still nurture the disability-rights revolution.

These models, then, amplify the “changing conceptualizations of disability” (Schalock et al., 2010, p. 173) by framing those conceptualizations and our understandings and interpretations of the construct called disability. In turn, our conceptualizations interact with social factors and core concepts to affect outcomes. If we can describe the nature of our conceptualizations, we can more readily understand why we regard people with disability from one conceptualization or another and, thus, use that understanding to advance or inhibit policy and practice (Turnbull & Stowe, 2001b). This is precisely the point the manual (Schalock et al., 2010) framework makes; however, by additionally describing the models of disability that underlie these conceptualizations, we believe the framework can be expanded and more clearly identify and describe “input” of changing conceptualization to public policy and practice.

Role of the Social Factors

The nation's present and future economic and demographic profiles will have massive effects on supports/services for individuals with disabilities. Some of the elements within those profiles are controllable by public policy. However, some social factors are not predictable and controllable. For example, if a state experiences natural catastrophes (e.g., flooding or tornadoes) or if the country suffers violent assaults (e.g., 9/11/01) and if legislatures and executive agencies shift budget and expenditure priorities accordingly, often (as is occurring today in all state human service funding streams) the shifts will result in fewer funds for human development and more for the other purposes.

Categories of factors and future research

The manual identifies six “social factors” and acknowledges the existence of others (Schalock et al., 2010, p. 172). Three of the six are policy based: sociopolitical movements, legal rulings, and statutory changes. These fall under the public studies model that we describe above. One factor, attitudinal changes, falls under the cultural studies model. Another factor, participatory research and evaluation framework, can be classified under the human development model (as a method of research into human development), public studies (as an expression of democratic principles affecting federally funded researchers and ultimate beneficiaries), or cultural studies (as a change in the culture of the research enterprise). The final factor, advances in research, belongs to the technological model, with research advances being evidence of the power of human (soft) technology and built (hard) technology.

One benefit, then, of using the five models to organize research is to suggest categories of factors and direct investigators' efforts to address these categories. How we think about disability affects how we study it. To extend still further the contribution of the Manual framework and its acknowledgement of three general categories of influencing factors, it seems appropriate to acknowledge that some factors are simply unknowable at the time researchers and policy makers and practitioners act. Moreover, some of the factors are also uncontrollable.

Nature of factors and their place in the AAIDD depiction of contextual factors

Additional work related to the manual framework should also identify some of the controllable and uncontrollable factors in the microsystem, mesosystem, and macrosystem (see Figure 1). Regardless of how powerful “formative feedback” (Schalock et al., 2010, p. 183) data are, any student of the human condition knows that, within a policy context, uncontrollable factors play a huge role in formulating, implementing, and evaluating disability policy. Additional consideration of the categorization of uncontrollable and controllable factors and their effects on the multiple social contexts within which people with intellectual disability live, learn, work, and play will be important, as will exploring how controllable and uncontrollable factors change over time in the chronosystem (see Figure 1).

Moreover, it is critical to remember that these influencing factors—predictable and unpredictable, controllable and uncontrollable—do not exist in only one of the three circles that the manual describes (see Figure 1). The core principle of civil rights at the macrosystem (e.g., antidiscrimination and equal opportunity, as expressed in ADA; i.e., rights on the books) undoubtedly influences the implementation of rights within the mesosystem and microsystem (rights on the streets), as the manual authors recognize. Undoubtedly the passage of time—the chronosystem—also affects the nature of the rights and the individual's experience as a rights bearer, as does the reality experienced by the rights' bearers as expressed in data on the quality of life of individuals and their families.

Similarly, the social factors and changing conceptualizations of disability inputs operate at the three levels and interact with the rights/core-concepts input. However, there is more to the matter of cause and effect: inputs affecting outcomes. To advance the manual's framework, researchers need to work to identify the multitude of social factors that affect individual and family quality of life. Listing them would take the manual framework forward. Moreover, given the number of policy-concerned members of AAIDD, developing the list through a Delphi process would not be difficult and could be done without significant external funding. That process would lay the groundwork for researchers to investigate the effects of the most often identified factors on individual and family quality of life.

The same process could easily apply with respect to the changing conceptualizations of disability. Likewise, the changing meaning of core concepts can powerfully affect individuals and families. The core concept of antidiscrimination seemed to mean one thing before the Supreme Court began to interpret ADA in a probusiness way (Stowe, Turnbull, & Sublet, 2006; Turnbull, 2008). Following the 2007 amendment to “restore” the ADA, the meaning of antidiscrimination seems to have returned to the original meaning. The question is: What difference to individuals and families did the pre–post meanings make?

Another line of research connecting quality of life to the ever-changing meaning of core concepts could relate to the effect of the deinstitutionalization and normalization policies and ideologies on Medicaid and on individual and family quality of life. Although the Centers on Medicare and Medicaid have increasingly offered states greater flexibility in designing home and community-based services (HCBS) waivers (i.e., macrosystem factors), the influence of state Medicaid directors or other dominant policy leaders can be powerful in either exercising or not the available options. This mesosystem influence trickles down to the microsystem level and there can depend even on how directors of catchment area programs apply the state's Medicaid program.

Furthermore, even though we do not want to admit it, individual-level factors (race/ethnicity, socioeconomic status, etc.) affect the street-level application of policy. These individual-level factors continue to play a role in how individuals and families report their quality of life. Research into the multiple systemic factors that affect the street-level application of policy is needed and could help identify disparate impacts and possible solutions.

These lines of research on the effects of social factors, core concepts, and conceptualizations might, as Schalock et al. (2010) anticipate and hope, clearly delineate outcomes and offer data that could be used to affect not only federal and state policy but its street-level implementation and effects.

Call to the Research Community

To advance the manual's public policy framework (Schalock et al., 2010), it will be important for the research community to become involved in identifying what factors most influence the manual's diagnosis, classification, and support planning components and investigating the effects of those known and unknown but suspected factors on individual and family quality of life. There are methodologies for that investigation. Without data from that research, the desired “formative feedback” described by Schalock et al. (p. 183) will be weak.

In the manual, Schalock et al (2010) state that, “Based on an understanding of how these factors impact public policy, we are in a better position to promote policies and practices regarding persons with [intellectual disability] that will enhance their lives and, thereby, better achieve desired policy outcomes” (p. 184). We agree with this position, but we ask this question: Do we understand enough? Given the components of the 2010 framework, AAIDD should take a leadership role in developing policy-specific research focusing on the issues of diagnosis, classification, and supports planning.

Conclusion

The benefit of the manual's public policy framework (Schalock et al., 2010) is indisputable. The 11th Edition has significantly contributed to the literature by creating an analytic framework for evaluating the inputs and outcomes of public policy and practice. When AAIDD added the supports component to its classification and terminology manual (Luckasson et al., 1992), it essentially demanded that that policies and practices alike must be mutually coherent and focused on outcomes for the individual. In addition, the most recent manual (Schalock et al., 2010) and its public policy framework demonstrates the connections, over time, among inputs, policy and practice, and outcomes, including, significantly, not only individual outcomes but outcomes for families, society (i.e., the public), and systems. Here, we support that approach and offer extensions and expansions to further the analytic framework and its grounding in public policy and perspectives that are inchoate or implicit in the current framework. We hope this will shape the ongoing refinement of the manual's public policy framework and its implementation over time.

References

References
Americans with Disabilities Act of 1990, P.L. 101-336, 42 U.S.C. Secs. 12101 et seq.
Assistive Technology for Individuals with Disabilities Act, as amended in 1998, P.L. 108-364, 29 U.S.C. Secs. 3001 et seq.
Individuals with Disabilities Education Act, as amended in 2004, 20 U.S.C. Secs. 1400 et seq.
Olmstead v. L.C., No. 98-536. U.S. Supreme Court, June 22, 1999. 138 F.3d 893, 11th Cir. 1998.
Rehabilitation Act, 1992 Reauthorization, 29 U.S.C. Secs. 701 et seq.
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Author notes

Karrie A Shogren, PhD (E-mail: kshogren@illinois.edu), Assistant Professor, University of Illinois at Urbana-Champaign, Department of Special Education, 1310 South Sixth St., Champaign, IL 61820. H. Rud Turnbull III, LlB/JD, LlM, Professor and Director, University of Kansas, Beach Center on Disability, Lawrence, KS 66045.