The AAIDD's 11th edition of Intellectual Disability: Definition, Classification, and Systems of Support describes a framework for understanding the relationship between public policy and practice. The framework incorporates three inputs into public policy and practice affecting quality-of-life outcomes for individuals and families, society, and systems. The inputs are social factors, the core concepts of disability policy, and changing conceptualizations of disability. We accept the framework's basic premises, but we propose amendments to make the framework more useful for its stated purposes of elaborating on the “context” (Schalock et al., 2010, p. 17) that affects people with intellectual disability and “promot[ing] changes in public policy that will lead to the achievement of desired policy outcomes” (Schalock et al., 2010, p. 171).
This article supplements one by Shogren and Turnbull (2010) that (a) demonstrated the connections among the AAIDD's public policy framework and core concepts and overarching principles of disability policy, (b) developed policy implications of models (conceptualizations) about intellectual (ID) and developmental disabilities (DD), (c) showed how core concepts and overarching principles can become the basis for the AAIDD's annual legislative goals, and (d) proposed research to identify the factors that most influence diagnosis, classification, support planning, and quality of life.
In this article, we address AAIDD's public policy framework. We review its purposes and components. We then identify how they can be improved; we offer a complementary but not inconsistent framework that classifies the AAIDD components more accurately, and we propose an annual review of factors that are included within the AAIDD and our framework.
The AAIDD Framework
In recognition of “the ecological perspective that focuses on the interaction of a person with ID and the person's environment and the recognition of that the systematic application of individualized supports can enhance human functioning,” the AAIDD's committee on terminology, classification, and systems of supports (Schalock et al., 2010, p. xiii) has defined ID; discussed issues related to diagnosis and classification; described systems of individualized supports; and identified the implications of the definition, diagnostic issues, and support issues for public policy. It has proposed an overarching conceptual framework of human functioning; discussed the interaction of various factors, including public policy; and described how policy is in an interactive relationship with research, practice, and quality of life outcomes. (For the sake of brevity, we refer to the committee's work as “the Manual” and, when citing it, we provide only page and Figure numbers.)
There are two purposes for developing a public policy framework. One is to elaborate on the “context” (the Manual, pp. 17, 171) that affects persons with ID. The other is “to promote changes in public policy that will lead to the achievement of desired policy outcomes” (the Manual, p. 171).
The public policy framework holds that three inputs drive the interactive relationship of public policy and practice. The inputs consist of social factors, the core concepts of disability policy, and changing conceptualizations of disability (the Manual, pp. 172–173).
The social factors include social and political movements, attitudinal changes, judicial decisions, statutory changes, participatory action research and evaluation frameworks, and advances in research. The core concepts are those essential ideas that statutes and court decisions reflect. The changing conceptualizations consist of the multidimensional framework of human functioning and the supports paradigm.
The ecologies are microsystems, meso-systems, and macrosystems, each operating within a chrono-system (the Manual, pp. 17, 173, 181). The microsystem consists of the “immediate social setting including the person, family, and/or advocate(s)” (the Manual, p. 17). The mesosystem consists of “the neighborhood, community, or organizations providing education or habilitation services or supports.” The macrosystem consists of “the overarching patterns of culture, society, larger populations, country, or sociopolitical influences.” The outcomes are at individual, family, societal, and system-change levels. There is interaction among the inputs, policies, practices, and outcomes at the micro-, meso-, and macrosystem levels across time.
The public policy framework is remarkably helpful in classifying the components of the policy context and describing their interactions with each other and their potential outcomes for quality of life. Can it nonetheless be made more useful for its two stated purposes of elaborating the context and promoting policy and outcomes? In the common cause of enhancing research, policy, practice, and quality of life outcomes, we think so. To that end, we describe an earlier, complementary approach and then critique the AAIDD framework by describing how the framework might be enhanced. To say that it can be enhanced is not to denigrate it at all but, rather, to acknowledge its utility for its stated purposes and to build on it for the same ends.
A Complementary Approach
At the outset, it is advisable to define the term “public policy.” In a nutshell, the term incorporates two components. The first is the written policy as expressed by statutes enacted by the legislative branch of government, regulations promulgated by the executive branch, and interpretations of statutes and regulations by the courts (the judicial branch). These constitute “policy on the books.” The second is the practice of the written policy by professionals and families or individuals affected by disability. This is “policy on the streets.” The AAIDD framework acknowledges both types of policy by referring to written policy (“judicial decisions” and “statutory changes”) (the Manual, pp. 172, 183) and practices that implement policies “on the books” (the Manual, p. 183).
To explain the role of core concepts and capture the “book” and “street” elements of policy, we earlier described and depicted a framework for analyzing policy, practice, and outcomes (Turnbull, Beegle, & Stowe, 2001). Under our approach, set out in Figure 1, the core concepts of policy have two roles: They both shape and reflect federal, state, and local policy in the fields of education, human and social services, and health care. Thus, the core concepts are depicted as inputs into policy (see the arrow from “core concepts” to “policy component”) and as responding to data about outcomes (see the arrow from “family quality of life” to “core concepts”).
These policies then authorize service delivery systems and direct how they operate; they profoundly affect practice. Figure 1 depicts that fact by the arrows from “core concepts” to “policy component” and from “policy component” to “services component.” There is a dynamic reciprocity among the core concepts on the one hand and practice, policy, and outcomes over time on the other. In this respect, Figure 1 and the AAIDD frameworks are mutually consistent.
Under our approach, however, the service systems entail partnerships (or lack of them) among service providers and the intended beneficiaries of services, namely, individuals and families affected by disability. Figure 1 depicts that by arrows that connect “policy component” to “services component” and then by arrows that connect “services component” to “partnerships” (the Manual, p. 14, Figure 2.1). These include the person, family, and/or advocates as components of “the immediate social setting” that is the microsystem. The AAIDD conceptual framework of human functioning and depiction of the interactive relationship between public policy and practice (the Manual, p. 173, Figure 13.1) do not specifically identify the interaction (“partnerships”) between individuals and families on the one hand and professionals on the other.
Unlike the AAIDD approach, our framework identifies the interaction between practitioners and beneficiaries as an explicit component of what the AAIDD approach terms “practice.” By doing so, our approach more precisely characterizes “practices”; they are not just what professionals do, but they also are how professionals do what they do in a relationship with beneficiaries (Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2011). The interaction between provider and beneficiary is explicit in our approach; it is not, in the AAIDD approach.
Under both frameworks, the services, in turn, affect the quality of life of families and their members with disabilities. In our framework, the interaction of policy, service systems, partnership, and quality of life outcomes occurs in local, state, and national contexts. That specificity may be under-acknowledged in the AAIDD conceptual framework of human functioning (the Manual, p. 14, Figure 2.1; p. 173, Figure 13.1; p. 181, Figure 13.2). Figure 13.1 correctly identifies “practice” (diagnosis, classification, design, and delivery of supports) but without specifying that practice occurs in or is influenced by local, state, and national contexts. Moreover, Figure 13.2 depicts four systems through which inputs (social factors, core concepts, and changing conceptualizations) are filtered. The mesosystem consists of “the neighborhood, community, or organizations providing education or habilitation services or supports.” That mesosystem arguably but not explicitly includes the “family and local” partnerships that our framework depicts. Moreover, it seems not to refer to the state and federal partnerships.
Under both our and the AAIDD framework, data about outcomes are fed back to the policymaking system, appropriately modifying federal and state policies and state and local practices. Our framework depicts that feedback loop by arrows beginning at “family quality of life” as an outcome and ending at “core concepts.”
In sum, the two frameworks are remarkably similar but not identical. Both acknowledge services as a component of practice. One difference lies in the fact that the “partnership” interactions are explicit in one but not the other. The AAIDD framework does not explicitly acknowledge that the beneficiaries of professional practice affect not just what professionals do (diagnosis, classify, design, and deliver) but how they do it. That omission contrasts with the AAIDD's acknowledgement that “participatory research and evaluation frameworks” are a “movement toward including people with ID and their families in the evaluation of personal outcomes resulting from services and supports” (the Manual, p. 172).
A second difference lies in the fact that one of the frameworks specifies that practice occurs in or is influenced by not just local but also state and federal factors. The AAIDD framework certainly acknowledges the influence on practice of national or federal factors, such as federal statutes and the interpretations of them (and the constitution) (the Manual, p. 172).
Making explicit what seems implicit would add detail to “context” and its policy-related depictions (Figures 13.1 and 13.2) and thus fortify the utility of the AAIDD purposes of describing context and promoting progressive, outcome-driven policy. Drawing attention to professional-beneficiary interactions and to the multilayered local–state–federal influences on practice could direct the attention of researchers, policy leaders, and advocates to the complexities of “street” policy and, from there, to “book” policy that might accommodate those complexities.
Social and Other Influencing Factors
In an effort to elaborate on the AAIDD frameworks so that they may more perfectly achieve their purposes, we now identify three other elements of the AAIDD framework that can be made more explicit, clarified, or elaborated. Specifically, we address three components of the AAIDD policy framework (Figure 13.1): the social and other influencing factors, the core concepts, and changing conceptualizations. It is entirely accurate to include each component as inputs to policy and practice. It may be helpful, however, to elaborate on them.
Our comments are not quibbles at the edges of the AAIDD framework. They go to the essence of the framework's components and thus to the utility of the framework to meet its stated purposes of elaborating the “context” dimension of the conceptual framework of human functioning and “promot[ing] changes in public policy that will lead to the achievement of desired policy outcomes” (the Manual, p. 171).
The AAIDD framework encompasses social factors that influence policy and its adoption (the Manual, p. 172, Figure 13.1). These are social and political movements, attitudinal changes, judicial decisions, statutory changes, participatory action and evaluation frameworks, and advances in research.
There are, however, other factors. In the broadest of terms and on a national basis only, these include, without limitation, the effects of (a) domestic policy that is not specific to disability policy (“generic” policy, such as housing, tax, transportation, or labor policy); (b) our international and military policy and its effect on fiscal resources, the development of medical and other interventions for wounded military and civilian personnel, and the esteeming or stigmatization of those personnel on account of their limitations or disabilities; (c) economic globalization of our fiscal resources and nondisability human service policies; (d) homeland terrorism; (e) domestic violence, including the killing and wounding that results from the use of high-impact weaponry; and (f) natural disasters such as occur when hurricanes assault coastal regions. Each of these factors influences generic and disability policy.
Similarly, state and local factors influence policy. These include, without limitation, (a) flooding in coastal states or drought in the heartland that affects the allocation of funds and personnel; (b) closures or consolidations of regional offices of social service or disability agencies that affect individuals' and families' access to and benefit from the agencies and privatization of previously governmentally provided services; (c) decisions about state participation in state-federal programs, such as the Affordable Care Act and its Medicaid provisions, that affect access and, when there is access, the nature and extent of benefits; and (d) changes in state taxation and expenditure policies that affect state resources and state and local budget priorities and services.
How are these factors taken into account in the AAIDD framework? The framework accommodates the interaction among inputs (social factors, core concepts, and changing conceptualizations); practices at the micro-, meso-, and macrosystem levels; and outcomes (the Manual, pp. 81, 182). But it cites only the supports model as an example of how interaction works.
As difficult as it may be to categorize the influencing factors, it nevertheless would benefit researchers, policy leaders, and advocates (each well represented within AAIDD's membership) if the committee on terminology and classification were to specify the factors that have most influenced disability policy recently and those that seem most likely to do so in the foreseeable future. The annual State of the States (Braddock et al., 2013) does an excellent job of explaining, principally, the economics of DD policy. But it is deliberately limited in scope.
Dialogue about contexts and research is necessary; we have barely begun the dialogue here. It may be that the committee and editors of this journal would agree to devote an issue a year to reviewing (and cautiously forecasting) the effect of influencing factors on the inputs, policies, practices, and outcomes and how those factors and results ripple outward into the AAIDD's pursuit of policy goals.
Three Policy Sectors
Also by way of contrast, our approach identifies three of the many sectors of policy, research, and practice that bear on individuals and families affected by disability. These sectors are education, social services, and health. These sectors are especially relevant to persons with ID or DD and their families. There are two reasons why this is so. First, these three sectors encompass the bulk of federal research and service expenditures for individuals and families.
Second, they interact dramatically with private entity and personal expenditure for services for individuals and families. (We could have included housing, labor, transportation, and communication policies, but we chose not to be so expansive.)
The AAIDD committee addresses these sectors when discussing systems of supports, paying special attention to prevention, mental and physical health supports, and education. It seems, however, that it would benefit the Association's members if the AAIDD committee, through this journal, would add sectors to those it already addresses and, in this journal, annually address how the sectors (in an expanded list) have been most affected by policy, practice, and research in the prior 10 years and how they are likely to be, and should be, affected by foreseeable factors.
The Role of State Policy
We have already made the point that written (“book”) policy derives not from the federal government alone. Granted, Congress and the federal executive departments are the origins of much of ID and DD policy (as the policy framework acknowledges, the Manual, p. 172), but federal policy often allows for not inconsistent state variation in federal policy, and thus does state variation influence local policy and direct service delivery.
Although the framework acknowledges the upward or downward effect of federalism on practice and outcomes (the Manual, pp. 179–182), it nonetheless would be helpful for the AAIDD committee to describe the constitutional principle of federalism; to acknowledge the increasing authority of state governments to design federally authorized programs and policy to meet their particular circumstances; and to make explicit that, in at least the three service sectors we identified above, federal, state, and substate policy interact in classification, research, policy, practice, and outcomes. It also would be helpful for the committee, again through this journal, to give examples of the interaction of federal and state policy from the 10 years preceding the next edition of the manual.
Policy on the Streets and the Effects of Practice
As we have noted above, practitioners, individuals, and families are policymakers. They engage in “street” policymaking. That is so because they determine how they use or do not use services. Their determinations constitute interpretations and applications of policy to the professional, the person, and the family.
The AAIDD framework holds that the interactions that it labels “practice: diagnosis, classification, and design and delivery of supports” involve practitioners and often (as we noted above) beneficiaries as partners. Likewise, the framework's citation to “participatory research and evaluation frameworks” seems to recognize “street” policy. Indeed, the framework acknowledges both “book” and “street” policy but does so by calling for wider implementation of current policies (the Manual, p. 183).
The larger point, and one that the framework can make more explicitly, is that these context-driven determinations undoubtedly interpret “core concepts,” reflect “social and political movements” and “attitudinal changes,” apply and sometimes cause changes in “judicial decisions” and “statutory changes,” and either stimulate or reflect “advances in research.” These practice contexts give meaning to the core concepts just as much as they affect the six “social factors.”
Here, too, the AAIDD committee could do a service to the Association's members by being utterly explicit that “book” and “street” are vital but different elements of policy. The committee does that by discussing the framework's implications for special education (the Manual, pp. 185–200) and support provider organizations (the Manual, pp. 201–215), but it should make explicit that conceptualizations are not abstract but are concrete; they are the point-of-delivery manifestations of conceptualizations about disability and about the core concepts and how they affect not just special education and support provider organizations but also informal supports and formal supports within other service-provider sectors. Again, this journal is an apt forum for that ongoing discussion.
The second input into policy and practice is the collection of the core concepts of disability policy (the Manual, pp. 172–173). The core concepts are those 18 fundamental ideas that underlie and shape and are reflected in the federal laws and decisions of the United States Supreme Court and other courts that have established enduring precedents (Turnbull et al., 2001). The statutes and decisions are separate sources of the core concepts. The committee recognizes that by listing “judicial decisions” separately from “statutory changes” (the Manual, p. 172). Table 1 lists and defines the core concepts.
The core concepts, however, are not “other factors” that are inputs to policy and practice as the committee describes them (the Manual, p. 172). Instead, as the committee acknowledges, they are separate factors, accorded the same importance as the “social factors” (the Manual, pp. 172–173, Figure 13.1). It may be more accurate in the future to identify discretely “judicial decisions” and “statutory changes” as the sources of the core concepts and then to separate the decisions and amendments and their resulting core concepts from social factors.
Still further and as the committee acknowledges (the Manual, p. 172), there is a dynamic relationship among the factors on the one hand and the core concepts and their evolving meanings on the other. Consider the social factor called “social and political movements,” such as civil rights, in particular and normalization, deinstitutionalization, and self-advocacy more generally. These movements and the core concepts interact.
Civil rights in the field of intellectual and developmental disabilities originate in race-rights law. When the Supreme Court held, in Brown v. Topeka Board of Education (1954), that segregation of white and black students in public education violated black students' 14th amendment right to equal protection, it established the principle that trait-based segregation was, absent compelling justification, unconstitutional. Just as race is an unchosen and unalterable trait, so too is disability regarded, for constitutional and statutory purposes, as an unchosen and often unchangeable trait (Americans with Disabilities Act, 1990; Individuals with Disabilities Education Act, 2004). Civil rights for those with IDD therefore reflect a constitutional principle captured in the core concepts of “antidiscrimination” and “integration.”
Similarly, normalization—making as normal as practicable the lives of people with disabilities—connects with the core concepts “individualized and appropriate services,” “integration,” and “productivity and contribution.” Those core concepts require tailored services that are delivered in integrated settings in which a person may be productive and contribute; they normalize a person's life.
Further, deinstitutionalization—preventing institutional placement, reforming the conditions of institutional settings, and discharging people from institutions—reflects the core concepts of antidiscrimination, protection from harm, liberty, autonomy, and integration. Likewise, self-advocacy—having agency in one's life—reflects the core concepts of autonomy and empowerment and participatory decision-making.
By the same token, the “social factor” of “participatory research and evaluation frameworks” also reflects the core concept of autonomy and empowerment and participatory decision-making. The participation of individuals or families affected by IDD in research rests upon their consent. Their consent is an expression of the core concept of autonomy—their decision to consent to participate—and their participation in the research is an expression of the core concept of empowerment and participatory decision-making.
In a word, the social and political movements and participatory research and evaluation exemplify the core concepts. In this respect, they reference and rest on the “judicial decisions” and “statutory changes” that AAIDD identifies as independent “social factors.” It seems more clarifying to regard the statutes and decisions jointly, to connect them more directly to the core concepts, and then to separate them from the movements and research/evaluation frameworks.
Clarification will be helpful with respect to another matter, namely, “attitudinal changes.” The term refers to “changes in how disability is perceived … resulting from social and political movements” (the Manual, p. 172). No doubt, perceptions result from movements, but movements also are the consequences of perceptions. More to the point, perceptions themselves, alone, are what may not legally be the basis of discrimination; Sec. 504 of the Rehabilitation Act Amendments of 1975 and the Americans with Disabilities Act of 1990 expressly prohibit discrimination based on how a person is “regarded.” Thus do “attitudinal changes” and “regarded as” connect under the core concept of antidiscrimination, itself a “civil rights” concept as reflected in various “social and political movements” (the Manual, p. 172).
Still more clarification is in order with respect to professionals' “interest in generating outcome data that operationalize the core principles guiding public policy” (the Manual, p. 173). In this statement, data shape how policymakers understand the concept of disability and how core concepts affect the conceptualizations and attitudinal changes. But data about how individuals and families experience disability reciprocally influence the concepts and how they bear on practice. For example, the core concept of liberty refers to physical freedom and originally was useful to advance deinstitutionalization; institutional discharge and prevention preserved liberty. Yet some data suggest that the community-based systems that largely have replaced the institutional approaches can impair a person's liberty as much as their larger-sized precursors.
Further, participatory research into institutional and community models can inquire into the type and extent of physical liberty, autonomy, empowerment and participatory decision making, protection from harm, and privacy and confidentiality. The data about how these core concepts are understood and applied in the two settings (institutional and community), in turn, tell what the concepts mean and whether practices are faithful to the concepts themselves.
Yes, these data “operationalize” the core concepts and “help to assess the efficacy of public policy and practice” (the Manual, p. 173), but they also require policymakers to determine what the data say about “attitudinal” or “regarded as” factors and whether policy needs to be changed so that there will be greater fidelity between the core concepts and the practices. Equally, the data reveal whether the core concepts of antidiscrimination, coordination and collaboration, and accountability are sufficiently expressed in statutes that have authorized and funded the practices from which data emerge.
The AAIDD framework captures this mixing—this dynamic of expression of a core concept and its practice or application—when it acknowledges that the concepts are “embedded in social attitudes,” form the “ideology” motivating policy leaders, and are a framework for “conceptualizing and assessing public policy outcomes” (the Manual, p. 174).
It is therefore regrettable that, in the text accompanying Figure 13.1, “judicial decisions” and “statutory changes” are separated from each other rather than recognized as the two components of the core concepts and then that they are regarded as “social factors” when, as we have noted, in fact, they jointly are the narratives, the expressions, of the core concepts and that the core concepts exist in a dynamic relationship with the “movements,” “attitudinal changes,” “participatory research and evaluation frameworks,” and data (the Manual, pp. 172, 174).
There is yet another way for AAIDD to clarify its framework, which is to consider the content of the “public policy” representation it has within its framework. That representation includes “rules, regulations, statutes, funding” (the Manual, p. 173). These elements are essentially so alike as to be stated as one: Statutes authorize regulations, which may not be inconsistent with the statutes themselves, and regulations sometimes become more detailed as rules, standard operating procedures, or guidelines that practitioners apply daily. Further, “funding” derives from appropriations, which, themselves, are not permissible unless authorized by a statute. Because courts interpret statutes, regulations, and rules and, thereby, indirectly affect appropriations, it seems awkward to place statutes, etc. within “public policy” without also including “judicial decisions.”
The policy framework holds that “changing conceptualizations of disability” are inputs into policy and practice (the Manual, p. 173). These conceptualizations are the “multidimensional framework of human functioning, supports paradigm.” That is indisputable. Nonetheless, a few comments seem to be in order so the framework might be more effective to achieve its purposes of elaborating on the context and advancing outcome-driven policy.
How might that be done? An obvious way is to identify the nature, sources, and limitations and benefits of changes in conceptualizations within the next edition of Intellectual Disability. That way, however, delays comments for the manual is not updated annually. Another way is for the committee or others to comment annually in this journal. That is our preference, and we state it here as a blanket recommendation covering all of the following comments about conceptualizations.
Having made a recommendation, it is necessary to make a semantic distinction between the committee's use of “conceptualization” and our use of “model” as descriptions of ways of thinking about the meaning of disability. The distinction will be clarifying for the diverse readership of this journal.
A concept is a thought or notion, an abstract or generic idea generalized from particular instances (Mish, 1990). To conceptualize is to form a concept and to interpret conceptually. Conceptualization is the act of conceptualizing. It is entirely defensible to use “concept,” “conceptualize,” and “conceptualization” as ways of describing “societal perceptions of disability” (the Manual, p. 171) or as an “ideology” or reflection of an “attitudinal change” (the Manual, p. 172), such as normalization, deinstitionalization, and self-advocacy.
In the same vein, we previously acknowledged that “models” of how one understands the construct known as “disability” affect the ways in which the person conceives, interprets, or applies policy to practice (Turnbull & Stowe, 2001). Here, too, reference to a dictionary helps clarify the meaning of “models” as it did with respect to “concept” and its variations.
One meaning of “model” is familiar to readers of this journal who have been trained in and practice in various scientific disciplines: “a system of postulates, data, and inferences presented as a mathematical description of an entity or state of affairs” (Mish, 1990). A different meaning of “model” may be familiar to other readers: “a description or analogy used to help visualize something that cannot be directly observed” (Mish, 1990), such as an atom or “concept.” We use the word “model” in that sense when we address “conceptualizations” about disability. The model describes that which cannot be directly observed, namely, an abstract idea generalized from particular instances.
The AAIDD framework explicitly reflects two conceptualizations or models and implicitly reflects a third. We earlier had proposed two other models, for a total of five (Turnbull & Stowe, 2001). Still elaborating on the AAIDD conceptual framework, we discuss each of our five models here.
The human capacities model
The AAIDD framework implicitly acknowledges what we called the human capacities model. It does so by including, under “changing conceptualizations” of disability, the “multidimensional framework of human functioning, supports paradigm” (the Manual, p. 173). It seems desirable, however, to make the human capacities model an explicitly clear component of the framework and to distinguish it from the cultural model (“changing conceptualizations”).
In our judgment, the human capacities model subsumes three sub-models. One is the traditional “medical model” (the person has a pathology that is remediable or preventable by the health sciences and that renders the person to be regarded as a patient; see the Manual, p. 6, for an explicit reference to “the medical model”). The second is the psychological model (the person responds to external stimuli). The third is the educational model (the person is capable of learning). The AAIDD committee refers to these submodels by including “intellectual abilities” and “adaptive behavior” as two of five components of its conceptual framework of human functioning (the Manual, p. 14, Figure 2.1).
We subsumed the core concepts of prevention and amelioration, privacy and confidentiality, individualized and appropriate services, autonomy, empowerment and participatory decision-making, antidiscrimination, integration, and productivity and contribution under the human capacities model. As research, practice, policy, or a combination of them reveal how the human-development model influences supports and human functioning (Figure 2.1) and personal, family, societal, and the system change outcomes (the Manual, p. 173, Figure 13.1), it may be useful for the committee to report those developments in an annual issue of this journal and to note how, if at all, they influence the core concepts.
The public studies model
Another model is what we have called the “public studies” model. This model consists of submodels represented by the disciplines of law, political science and political philosophy, political economy, demographics, public administration, and social welfare.
As the AAIDD committee noted (the Manual, p. 173), the public studies model reflects the core concepts of antidiscrimination, classification, individualized appropriate services, and integration. In our judgment, it also incorporates the core concepts of autonomy, empowerment and participatory decision-making, liberty, privacy and confidentiality, cultural responsiveness, and professional and system capacity development. It was not necessary, but would have been helpful, for the committee to have identified the submodels and then to have listed the related core concepts. That too may be desirable in annual reviews.
Moreover, the “social factors” in Figure 13.1 incorporate social and political movements that rest clearly on rights: civil rights themselves and restatements in the language of normalization, deinstitutionalization, and self-advocacy. By linking the social and political movements to rights, the committee correctly but not explicitly referred to the submodel that we called law.
Further, because core concepts are the grounds for rights (the law submodel) but depend on and are realized in the context of revenues, the committee has referenced the political economy submodel. After all, and not to be too Marxian about it, rights run with revenues. Similarly, because the application of rights depends on how they are individualized, the capacity of service systems to deliver what law authorizes and funds them to deliver, and the accountability of service systems to do so, the core concepts also belong to the submodel that we call public administration.
Indisputably, the AAIDD framework explicitly relies on the public studies model. It may be useful, however, for the committee to identify the various submodels, associate the core concepts with the law submodels, and connect that submodel to yet others, including the political economy and public administration submodels. Also, the committee may want to take into account the demographics submodel. That is so because the aging of the nation's population raises issues about family support for older parents whose now-adult children with disabilities live with them, and the availability of public resources to support those aging parents. With respect to family support and long-term care, the demographics sub-model also brings up issues about public administration and political economy—how to operate such a system and how much to invest in it.
In short, if the committee were to publish an annual review and commentary, it would guide the users of the definition manual about some of the critical elements of its public policy framework (Figure 13.1).
The cultural studies model
The other model explicit within the framework's “input” component is what we called the “cultural studies” model. The committee uses the term “changing conceptualizations of disability” to invoke the cultural model. In both the AAIDD and our approach, the “cultural model/changing conceptualizations” category reflects the new paradigm of disability as a transactional phenomenon that permits esteeming (valorization) or stigmatization of persons with impairments. In describing the cultural model, we argued that it addresses how disability is regarded, conceptualized, and expressed, and we particularly referenced the disciplines of cultural anthropology, sociology, literature, the performing arts, and history.
Within the framework's “changing conceptualizations” (the Manual, p. 173) are “core person and system-referenced concepts and principles that guide policy” and that “become embedded in societal attitudes about disability” (the Manual, p. 174). These concepts and principles “form the ideology that motivates” various actors to seek “the enhancement of valued outcomes” (the Manual, p. 174). Further, they “constitute a framework for conceptualizing and assessing public policy outcomes” (the Manual, p. 174).
We do not disagree, but it seems to us that the framework would benefit if “changing conceptualizations” were to identify and exemplify the various disciplines associated with cultural understandings of disability.
It also would be helpful to make it clear that classification, as a scientific act, is reciprocally influenced by the “cultural/changing conceptualizations.” The committee seems to intend to say as much when it writes that “as … concepts and principles become embedded in societal attitudes regarding disability, they are the background within which outcome expectations are developed” (the Manual, p. 174). That is inarguable, but it is not just that concepts (core concepts) and principles of disability policy, such as normalization, deinstitutionalization, and self-advocacy (the Manual, p. 172), become “embedded,” so much as it is that societal attitudes (what we call the components of the disciplines/submodels within the cultural model) simultaneously create and reflect—are cause and manifestation of—the cultural understanding of disability.
That creation or reflection, that causation or manifestation, arguably is sufficiently captured in the committee's statement that “[b]oth public policy and classification systems are, in turn, shaped by the societal perceptions of disability” (the Manual, p. 171). But it seems potentially confusing for the framework to associate “changing conceptualizations”—the cultural model—with the “multidimensional framework of human functioning, supports paradigm” (the Manual, p. 173). Undoubtedly, “changing conceptualizations” relate to “human functioning,” but the conceptualizations are the marrow of the “cultural model” just as “human functioning” is the marrow of the human capacity model.
Further, while it is also clear that “changing conceptualizations” relate to the “supports paradigm,” it seems desirable to point out that the “supports paradigm” is a way of thinking about the core concepts called individualized appropriate services, cooperation and collaboration, protection from harm, liberty, integration, productivity and contribution, and prevention and amelioration. If it is true that the “supports paradigm” connects this closely with the core concepts, then it follows that the “supports paradigm” belongs with the “public studies” model and at least three of its submodels, namely, the submodel of law (rights and entitlements to supports), public administration (delivery of supports that are based on rights or entitlements), and public economy (fiscal resources for the supports).
Just as it will be helpful for the committee to distinguish “changing conceptualizations,” “human functioning,” and “supports paradigm” by associating them with one of the models we have named and the core concepts we have identified, it also will be helpful for the committee to point out that the models overlap and are complementary. A changing conceptualization (the social model and the strength-based approach, for example) interacts with what researchers and classifiers do, with how the public studies field responds, and with how our culture conceives of and responds to disability.
In our judgment, the third (judicial decisions) and fourth (statutory changes) factors are best understood if subsumed under the public studies model and its related core concepts, and the first (social and political movements) and second (attitudinal changes), along with the third and fourth factors, are best understood if classified under the other models. Thus, for example, the social movements of normalization and deinstitutionalization can be understood, respectively, through both the public studies and the cultural studies models. Similarly, judicial decisions and statutory changes fall into the public studies model. Likewise, the factors known as “participatory research and evaluation frameworks” and “advances in research … that has led more successful intervention” fall into the human-capacities model. In our approach, we distinguish among the factors that AAIDD's approach groups together.
Two other models: Ethical and philosophical, and technological
Two models seem to be absent in the policy framework yet would buttress it. One is the model of ethical and philosophical studies. This model involves the ethics and philosophies that shape the cultural studies and public studies models. It includes secular ethics and philosophy as well as religious precepts. The essence of the model is the “right and wrong” about how to respond to the fact of a “disability” or “impairment” in our fellow citizens. Its related core concepts are protection from harm, prevention and amelioration, autonomy, and cultural responsiveness. It seems unnecessary to assert that ethics, including theologically based ethics, profoundly have influenced the field of intellectual and developmental disabilities. Early in the 1970s, exposés of the horrific conditions of institutions appealed to our profession's sense of what we are doing that is “right” and not so “right” and provided some of the factual bases for the constitutionally based right to treatment and right to education litigation. If members of the committee or leaders of the division on religion were annually to link developments in research, practice, and policy to ethics, by annual accounts in this journal, they would make clear that what is “right” or not (e.g., positive behavior supports as contrasted to aversive interventions) conceptualizes the personhood and dignity of individuals with ID or DD.
The other is the “model of technology studies.” This model is concerned with the “built” or “constructed” environment. It subsumes the disciplines of architecture, industrial engineering, and ergonomics. Its related core concepts are antidiscrimination, productivity and contribution, integration, individualized and appropriate services, and individual capacity building. Here, again, an annual recounting of technological developments would contribute to how ID or DD is conceptualized; the power of assistive technology, for example, to augment human functioning reshapes how the personhood and dignity of a person with ID or DD is framed and thus how that person's limitations and characteristics are conceptualized.
When AAIDD's ad hoc committee used this journal to invite the Association's members and other readers to comment on chapters, including the one about policy, that were to be and now are included in the Manual, it acknowledged that, however useful its policy framework is, the committee had hardly completed its task of describing the public policy implications of the Manual's terminology, classification, and supports approach. In this article, we have accepted the committee's invitation to join in a conversation to improve the Manual's discussion. We have done so with great respect and appreciation for the committee and its increasingly nuanced explanations about classification, terminology, and supports.