This is the fifth in a series of articles from the Terminology and Classification Committee of the American Association on Intellectual and Developmental Disabilities (AAIDD). The purpose of these articles is to share the committee's thoughts on critical issues associated with terminology, definition, and classification in the field of intellectual disability and to seek input from the field as we prepare the 11th edition of AAIDD's Diagnosis, Classification, and Systems of Supports Manual (working title). In the first article, we discussed the shift from the term mental retardation to intellectual disability (Schalock et al., 2007) and reaffirmed the authoritative definition of intellectual disability and the assumptions guiding its adoption. As published in Luckasson et al. (2002, p. 1) and Schalock et al. (2007, p. 118), this definition is as follows:
[Intellectual disability is] characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18.
In the second article (Wehmeyer et al., 2008), we distinguished between operational and constitutive definitions of intellectual disability and discussed their application to understanding the construct underlying the term intellectual disability, emphasized an ecological perspective of intellectual disability that focuses on person–environmental interaction, and stressed that the systematic application of individualized supports can enhance human functioning and personal outcomes. In the third article (Thompson et al., 2009), we discussed supports and support needs as they pertain to people with intellectual disability, and in the fourth article (Snell et al., 2009) we discussed the unique issues encountered by individuals with intellectual disability with higher IQs.
This article focuses on public policy and the potential application of the upcoming 11th edition of the AAIDD Diagnosis, Classification, and Systems of Supports Manual and its classification and supports planning components to promote changes in public policy that will lead to the achievement of desired policy outcomes. To that end, this article discusses (a) social factors that influence public policy and its adoption, (b) the core principles guiding disability policy, (c) desired policy outcomes stemming from these core principles, and (d) a framework for implementing the 11th edition's definition of intellectual disability and its classification and supports planning components to influence desired public policy outcomes. In reading the article, it is important to point out that public policy is a critical part of context, the fifth dimension of the proposed AAIDD theoretical framework of human functioning (cf. Wehmeyer et al., 2008, Figure 1).
Social Factors Influencing Public Policy and Its Adoption
Public policy exerts a significant influence on society at large and on people with intellectual disability specifically. The development and implementation of public policy are dynamic processes that both influence practice and are influenced by changes in practice and assumptions in the field. This reciprocal relationship is evidenced in the connection between public policy and diagnostic and classification schemes. On one hand, public policy influences the diagnostic and classification process through state guidelines regarding diagnostic criteria and eligibility requirements. Conversely, changes in classifications systems, and the underlying principles that support them, influence perceptions of the needs and capabilities of people with intellectual disability and, in turn, have an impact on how public systems design and deliver supports and services. Both public policy and classification systems are then shaped by societal perceptions of disability and by data generated in the field on the outcomes experienced by people with intellectual disability.
This synergy between public policy and changes in assessment and classification assumptions has led to an increased recognition of the importance of individualized supports to the enhancement of functioning. It has also spawned the growing emphasis on self-directed funding, person-centered planning, and home-based supports (Prouty et al., 2008). Such policies, as embodied in the conduct of public intellectual and developmental disability systems, facilitate society's response to individual support needs and promote person-referenced rather than program-referenced outcomes.
Multiple social factors influence public policy and its adoption and implementation. The goals and purposes of public policy and public service systems for people with intellectual disability have significantly changed over time due to changes in both ideology and increased knowledge regarding the nature of disability. In the past, public systems for this population offered only custodial care and treatment in state-operated facilities. As community-based services have become the predominant mode of service delivery, public managers, advocates, and other stakeholders have worked hard to ensure that these supports and services reflect the individual's needs and preferences rather than program and facility needs, preferences, or conveniences. In addition to changes in ideology and knowledge regarding the nature of disability, these changes in public systems have been driven by other factors, including the following:
Social–political movements: General (e.g., civil rights) and disability-specific (e.g., normalization, deinstitutionalization, self-advocacy) social and political movements.
Attitudinal changes: Changes in how disability is perceived in society resulting from social–political movements and the adoption of an ecological perspective.
Legal rulings: Legal decisions affirming the right of individuals with intellectual disability to habilitation (Halderman v. Pennhurst State School and Hospital ; Wyatt v. Stickney ); to a free, appropriate public education (Pennsylvania Association for Retarded Children v. Pennsylvania [1971, 1972]; Mills v. District of Columbia Board of Education ); and to live in the most integrated, appropriate setting (Olmstead v. L.C. ).
Statutory changes: Legislation codifying the aforementioned social–political movements and legal rulings (e.g., the Individuals With Disabilities Education Act ; the Americans With Disabilities Act of 1990).
Participatory research and evaluation frameworks: The movement toward including people with intellectual disability and their families in the evaluation of personal outcomes resulting from services and supports.
Advances in research regarding the nature of disability that has led to more successful interventions: The adoption of new techniques and technologies that improve outcomes and enhance our expectations of what people with intellectual disability can achieve.
Together, these social factors have led to significant changes in public policy and practice in the disability field. As shown in Figure 1, these social factors are one of the “inputs” that exerts influence on the interactive relationship between public policy and practice.
Core Principles Guiding Disability Policy
National and international disability policy is currently premised on a number of principles that are (a) person-referenced such as self-determination, inclusion, empowerment, individual and appropriate services, productivity and contribution, and family integrity and unity and (b) system-referenced (supports/service delivery) such as antidiscrimination, coordination, and collaboration, and accountability (Montreal Declaration, 2004; Salamanca Statement, 1994; Stowe et al., 2006; Turnbull et al., 2001; Umbarger, 2001). These principles have been operationalized in the United Nations Convention on the Rights of Persons With Disabilities (United Nations, 2006) articles that address the following domains: rights (access and privacy); participation; autonomy, independence and choice; physical well being; material well being (work–employment); inclusion, accessibility, and participation; emotional well being (freedom from exploitation, violence, and abuse); and personal development (education and rehabilitation).
Over time, as our understanding of disability and human functioning has deepened and become more progressive, these evolving assumptions have fostered public policy that promotes change based on various types of information (e.g., research, evaluation, quality assurance). It has also increased our interest in generating outcome data that operationalize the core principles guiding public policy. Such data help to assess the efficacy of public policy and practice, which as depicted in Figure 1, creates a feedback loop that impacts public policy and practice over time. For example, the focus on individual choice and control over services and supports has led to the implementation of self determination, self-directed funding, and the creation of individual budgets based on assessed needs and assets. These entailments that focus on individual outcomes have lead to ongoing change at the individual, community, and societal level.
Desired Policy Outcomes
Professional organizations and support/service providers throughout the world concerned about people with intellectual and closely related developmental disabilities are focused increasingly on identifying and assessing outcomes related to the core principles of disability policy. There are at least three reasons to focus on desired policy outcomes related to the personal, familial, and societal outcomes described in this section and summarized in Tables 1–3. First, the outcome domains and exemplary indicators provide a conceptual and empirical link among the core disability principles, legislative initiatives, and legal trends discussed throughout this article. Second, desired policy outcomes underscore why the clinical functions of diagnosis and classification are not ends in themselves; rather, as these two clinical functions are integrated into, and aligned with, the provision of individualized supports, the anticipated outcome is the enhancement of human functioning as reflected in one or more outcome domains and indicators described in Tables 1–3. Third, desired policy outcomes help us recognize the interrelatedness of context with the other dimensions that influence human functioning.
The construct of desired policy outcomes is directly tied to recent legislative and legal trends that have in turn shaped the supports and services provided to persons with intellectual and closely related developmental disabilities. For example, the intent of recent legislation in most countries has been to ensure rights to education and community living, access to rehabilitation and employment options and opportunities, technological supports and assistive technology, and person-centered planning. Similarly, legal trends (especially in the United States) have shifted public policy from the preemption of choice to self-determination, from exclusion to inclusion, from segregation to community-based supports, from discrimination to nondiscrimination, and from “paper rights” to rights grounded in established law (Herr et al., 2002). Each of these trends, along with the emphasis on accountability and systems efficiency, has resulted in the conceptualization and measurement of outcomes such as those suggested in this article.
The core person and system-referenced principles that guide disability policy have also influenced how we express desired policy outcomes in three important ways. First, as these principles become embedded in societal attitudes regarding disability, they are the background within which outcome expectations are developed. Second, these principles form the ideology that motivates policymakers, funders, and other stakeholders to work for the enhancement of valued outcomes for service recipients, families, and the larger society. Third, these principles constitute a framework for conceptualizing and assessing public policy outcomes such as the outcome classes we suggest later in the article: personal, family, societal, and systems change.
Outcome data can be used for multiple purposes, including analyzing the impact of specific public policies, monitoring the effectiveness and efficiency of supports and services, providing a basis for quality improvement and performance enhancement, meeting the increasing need for accountability, and helping establish the parameters of best practices. The increased of use outcome data as a metric to understand performance is occurring at the same time that we are seeing the emergence internationally of four important trends in the field or intellectual disability.
A movement from monolithic, unitary service delivery organizations to highly complex (and widely varying) support systems composed of multiple levels and types of providers, settings, and structures, and dispersed settings.
A movement from traditional standards and methods associated with compliance and documentation to a quality assessment and improvement methodology that focuses on the systematic collection and analysis of data and information and the implementation of action strategies based on the analysis.
A movement from management and leadership strategies that are organizational or systems oriented to strategies that involve managing for results and community integration.
A movement from traditional, discipline-based research strategies to a transdisciplinary approach to research that involves policymakers, researchers, practitioners, and individuals with intellectual disability and their families working jointly to produce both scientific understanding and societal applications.
Each of the above trends suggests the need to measure one or more of the four classes of policy outcomes described next. These outcomes can be used to provide common outcome data across a disparate service delivery system. In addition, such measurement also provides information that can be used for policy evaluation, quality assessment and improvement, quality management and reporting, and transdisciplinary research.
Personal outcomes can be approached from two perspectives. The first is a delineation of valued life domains as reflected in the work of the World Health Organization (1995) and the United Nations (2006). The second, and complementary, perspective is based on recent work in the field of individual-referenced quality of life that focuses on the identification of domain-referenced quality indicators. The measurement of these respective indicators results in personal outcomes (Gardner & Carran, 2005; Schalock et al., 2007). The referent for personal outcomes is change in these assessed personal outcomes within the individual over time. The domain-referenced indicators summarized in Table 1 are based on the work of Alverson et al. (2006); Colley and Jamison (1998); the Council on Quality and Leadership (2005; Gardner & Carran, 2005); Gómez, Verdugo, Arias, and Navas (2008); National Core Indicators (2003; Bradley & Moseley, 2007); National Council on Disability and Social Security Administration (2000); Schalock et al. (2005); Verdugo et al. (2007, 2008); and the U.S. Department of Education (2007).
Even though the focus of the 11th edition of AAIDD's Diagnosis, Classification, and Systems of Supports Manual (working title) is on individuals with intellectual disability, the majority of these persons still reside with their family, or in a family home that is defined as, “a house owned or rented by a family member of a person with an intellectual or developmental disability in which the individual with intellectual or developmental disability resides and receives care, instruction, supervision, and other supports from persons other than family members and/or from family members who are paid” (Prouty et al., 2008, p. 82). As stated by Prouty et al. (2008),
The total number of persons with intellectual or developmental disability reported to receive services and supports during the 1996–2006 decade increased from 612,928 to 984, 662 (a 60.6% increase). Of the estimated 371,374 person increase, 75% was accounted for by growth in the number of persons reported to be receiving services and supports while living with family members. (p. 82)
Families who have a family member with intellectual disability and who are providing individualized supports to that person in the home are impacted significantly. This impact is reflected in the evolution of both public policy and the concept of family support plans (Turnbull et al., 2001, 2004). Therefore, a companion class of policy outcomes to the person-referenced outcomes just described has emerged within the field of family quality of life. Exemplary domains and indicators are summarized in Table 2. These domains and indicators are based on the work of Aznar and Castanon (2005), Isaacs et al. (2007), Park et al. (2003), and Summers et al. (2005). The referent for these outcomes is change over time in the family indicators–outcomes listed.
Community membership is a useful label for the present service paradigm within the field of intellectual disability, as it continues to evolve to a supports-based approach. Consistent with the 1992 (Luckasson et al.) and 2002 (Luckasson et al.) AAIDD Manuals, the 11th edition of AAIDD's Manual emphasizes attitudes and practices that recognize full citizenship of people with intellectual disability, while acknowledging that although intellectual disability constitutes a significant limitation to the individual, the goal of a supports-based approach is to facilitate the inclusion of individuals with intellectual disability in the full life of the community. With this goal in mind, societal–community indicators are increasingly being used in the field to determine (a) the discrepancy between personal outcomes for persons with intellectual disability and community indicators and (b) whether disability-related public policies have impacted or reduced that discrepancy. With the increased emphasis in public policy on the rights to education and community living, access to rehabilitation and employment opportunities, and individualized supports to enhance human functioning, it is reasonable that community indicators become the referent at the societal level in the analysis and evaluation of public policy outcomes (Emerson & Hatton, 2008; National Research Council, 2002; Schalock et al., 2007).
Historically, social indicators, which refer to external, environmentally based conditions, have been used to facilitate concise, comprehensive, and balanced judgments about the conditions of major aspects of society (Andrews & Whithey, 1976; Kahn & Juster, 2002; Schalock, 2001; Sirgy et al., 2006). Examples include health, social welfare, friendships, standard of living, education, public safety, employment rates, literacy, mortality, life expectancy, housing, neighborhood, and leisure. As discussed by Emerson et al. (2007) and Arthaud-Day et al. (2005), during the last 3 decades, social indicators associated with subjective well being, which is considered a key component of the quality of life of persons with intellectual disability (Cummins, 2005), have also been used to analyze the impact of economic and social policies. As shown in Table 3, there are three significant indicators of subjective well being as currently conceptualized and measured: a cognitive appraisal of life satisfaction, positive affect, and the absence of negative affect.
Although the assessment and use of societal outcomes in the field of intellectual disability are emerging, the focus of current efforts is on the three domains listed in Table 3: socioeconomic position, health, and subjective well being. The domains and indicators listed in the table are based on the work of Cummins (2003), Deiner et al. (2002), Emerson et al. (2006), Emerson and Hatton (2008), and Mackenbach et al. (2008).
Systems Change Outcomes
The outcome domains and exemplary indicators presented in Tables 1–3 reflect the intended impact and outcomes of core disability principles and legislation. The focus on these outcomes also reflects the movement within the field of intellectual disability away from a sole focus on diagnosis and classification to an increased focus on the planning and provision of individualized supports that enhance human functioning as reflected in the personal, family, and societal outcomes discussed above. Furthermore, these outcome domains and exemplary indicators result in information that is responsive to the quality revolution, with its focus on valued outcomes, and the reform movement, with its emphasis on outcomes rather than inputs and processes and the use of outcome-related information as a basis for quality management and quality improvement.
These outcomes can also be viewed as indicators of systems change. As depicted in Figure 1, changes in practice or in the public systems that are responsible for the design and delivery of supports and services can impact desired policy outcomes. In addition, data on personal and family outcomes such as those described in Tables 1 and 2 can be aggregated at the organization and/or systems level to provide a performance index or a measure of systems change (Bradley & Moseley, 2007; Gardner & Carran, 2005; Keith & Bonham, 2005; Schalock et al., 2007). For example, the National Association of State Directors of Developmental Disability Services/Human Services Research Institute (NASDDDS/HSRI) developed National Core Indicators (2003) that include a survey of personal, rather than programmatic, outcomes. Twenty-nine states are collecting this information, and data on the outcomes of over 12,000 individuals are available. Similarly, accrediting organizations such as the Council on Quality and Leadership (2005) are using personal outcomes as an essential and integral component of the accreditation process. Provider profiles that include annual summaries of aggregated quality of life-related personal outcomes are also being used in at least 2 states for meeting accountability and public reporting requirements and providing the basis for quality improvement strategies (Keith & Bonham, 2005).
Outcome data such as those studied by Braddock (e.g., Braddock, 2002) can also be used to evaluate systems change. For example, in Braddock's longitudinal evaluation of state-level systems change, the major indicators he used included (a) distribution of residential services by setting, (b) trends in intellectual and developmental disability spending (i.e., community services, individual and family support, and public–private institutions), (c) numbers of persons in supported employment, and (d) numbers of persons in supported living and (receiving) personal assistance. Increasingly, there is a need to evaluate two additional systems change indicators: access to services (e.g., transportation and waiting lists) and the availability of specific services across geographical areas.
Collectively, these outcome classes and system change indicators result in information that is responsive to changes in our understanding of intellectual disability and our growing recognition of the importance of individualized supports to the enhancement of human functioning.
Framework to Influence Public Policy Outcomes
To understand the potential of the 11th edition of the AAIDD's Diagnosis, Classification, and Systems of Supports Manual (working title) to influence public policy outcomes, it is critical to understand the multiple factors that influence these outcomes. One set of factors are those depicted as “inputs” in Figure 1: social factors, core concepts of disability policy, and a changing conception of intellectual disability. Changes in public policy resulting from these inputs lead to changes in practices, which in turn have an impact on desired public policy outcomes. As also shown in Figure 1, a focus on outcomes can reshape the information that is generated by public systems and, therefore, influence the information that guides the development of public policy. Thus, the relationship between public policy and practice is interactive.
A second set of factors are the multiple systems within which people live, are schooled, work, and recreate. As shown in Figure 2, which is based in part on Bronfenbrenner's (1979) conceptualization of human development, the inputs (social factors, disability core concepts, and changing conceptions of disability) are operationalized through the multiple contexts within which individuals function: the immediate social setting, including the person, family, and advocates (microsystem); the neighborhood, community, or organizations providing education and support (mesosystem); and the overarching patterns of culture, society, and sociopolitical influences (macrosystem). The person and these multiple systems interact over time (chronosystem). Thus, individual and aggregated outcomes are affected by these system filters. For example, at the societal, or macrosystem, level, the core principle of civil rights can be translated into a commitment on the part of society to concrete outcomes such as dignity, respect, choice, and equality. At the community and support system, or mesosystem, level, the principle of rights can be understood (and measured) as the expression of fairness, dignity, and respect by community organizations and support providers to people with intellectual disability and their families. At the individual, or microsystem, level, rights can be understood through the self-report of families and people with intellectual disability regarding whether their basic human rights have been respected. Last, over time (chronosystem), changes occur in how rights for people with intellectual disability are understood and expressed across all levels of the system. For example, changes in society (e.g., the civil rights movement) can interact with changes in how supports and services are designed and delivered (e.g., more people with intellectual disability living in the community), leading to variation in the nature of the rights afforded to them.
Furthermore, the operationalization of each of the inputs at each level of the system influences the operationalization of the inputs at the other levels of the system over time. For example, the core principle of rights may be adopted in public policy at the societal level and filter through to the other levels of the social context (e.g., support providers creating a bill of rights for the individuals they serve; an individual expressing his/her right to equal access to a public service). However, changes at the micro- or mesosystem level can also filter outward and lead to changes at the societal level (e.g., an individual with a disability learning about the rights afforded other groups and beginning to advocate for change in public policy and practice; a support provider organization implementing a consumer-directed model that leads to positive outcomes that it then uses to guide the development of public policy related to consumer-directed supports).
Understanding the multiple factors that influence the adoption and implementation of public policy can exert significant change on practice in the field. For example, the supports model—as a social–political, movement/input factor—has changed public policy and led to a shift in the practices used by public systems that provide services and supports to individuals with intellectual disability over time. The supports model has also had an impact through each level of the social context by changing public policy, organizational practice, and the outcomes experienced by these persons and their families (Turnbull et al., 2001).
As discussed in reference to Figures 1 and 2, policy outcomes are critical to understanding the inputs, throughputs, and outcomes of public policy. As shown in Figure 1, outcome data provide essential formative feedback to policymakers regarding the effectiveness of a given policy and important outcome-related information that can be used by organizations and systems for quality management, quality assurance, and quality improvement. As shown in Figure 2, there is an interactive relationship between outcomes and the multiple systems (micro, meso, and macro) that impact all persons. This systems perspective provides the framework for the outcome classes discussed in the previous section of this article: personal and family (microsystems level), systems change (mesosystem), and societal (macrosystems level).
The proposed framework for understanding how the 11th edition of AAIDD's Manual can impact public policy outcomes includes the following six action steps:
Establish best practices in the field of intellectual disability. These best practices involve (a) meeting the three criteria for a diagnosis of intellectual disability and understanding the various factors that impact the assessment process and the measurement of intellectual functioning and adaptive behavior (Schalock et al., 2007); (b) using multiple classification systems to answer respective classification questions; (c) assessing the support needs of individuals with intellectual disability and providing individualized supports to enhance human functioning and personal outcomes; and (d) using clinical judgment and clinical judgment strategies that are based on the clinician's explicit training, direct experience with those with whom the clinician is working, and specific knowledge of the person and the person's environment.
Achieve greater universal use of a multidimensional approach to diagnosis, classification, and supports provision. To accomplish this action, it is necessary to understand the approach clearly and align the core functions of diagnosis, classification, and planning–delivery of individualized supports. These efforts require that the desired outcome of the process of diagnosing and classifying—the delivery of individualized supports that enhance individual functioning and promote desired personal outcomes—be used to guide the application of the multidimensional approach to diagnosis, classification, and supports provision.
Address current policy and system disconnects. To ensure that the individual needs of people with intellectual and closely related developmental disabilities are met across the lifespan, it is necessary to integrate services, supports, and policies across current service delivery systems. This integration requires addressing a range of policies and pieces of system infrastructure to create a seamless platform for the delivery of long-term supports from birth through school years and into adulthood. In addition, there is a need to address the access to services (as reflected in transportation availability and waiting lists) and the availability of specific services across geographical areas.
Implement more widely the policies that are already in existence. For many persons with intellectual disability, policies that have the potential to promote desired outcomes are “on the books” (e.g., interagency collaboration in the Individuals With Disabilities Education Act, 2004) but not implemented in practice. Mechanisms such as professional education and training programs, outcome-based management and information systems, and quality improvement strategies (based on the feedback loop depicted in Figure 1) should be used to facilitate broader implementation of existing policies.
Focus on personal outcomes and their enhancement. Personal outcomes should be enhanced through the provision of individualized supports that are based on (a) understanding the dynamic interaction–interplay among the person, her/his pattern and intensity of needed supports, and his/her environment (as shown in Figure 2); and (b) aligning functional characteristics, assessed support needs, and the allocation of resources. These points are discussed in more detail in Snell and Luckasson (2009) and Thompson et al. (2009).
Use formative feedback generated by the assessment of policy outcomes. Systematic data should be collected on the personal, familial, and societal outcomes described in Tables 1–3. These data can then be used to evaluate the effectiveness of a given policy, systematically identify necessary changes in public policy and practice, and develop action strategies for implementing these changes.
Multiple social factors have influenced the adoption and implementation of public policy toward people with intellectual disability. Chief among these factors are social–political movements, attitudinal changes, legal rulings, statutory changes, participatory action research, and advances in research regarding the nature of disability and successful interventions. Because we understand these factors' impact on 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 public policy outcomes.
In addition to summarizing the social factors influencing public policy and its adoption and the core principles guiding disability policy, the intent of this article is to delineate clearly desired policy outcomes that we categorize as outcomes related to the person, the person's family, society, and the service delivery system. After these desired policy outcomes are clearly delineated, policies and practices can be directed at their evaluation and enhancement. One such practice focuses on the use of the anticipated 11th edition of AAIDD's Manual on Diagnosis, Classification, and Systems of Supports as a framework for impacting public policy outcomes. This framework involves action steps related to best practices, a multidimensional approach to classification and supports provision, augmenting current policies and reducing policy disconnects, and using formative feedback generated by the assessment of desired policy outcomes at the personal, family, societal, and systems change levels.
Karrie A. Shogren, PhD (firstname.lastname@example.org), Assistant Professor, University of Illinois at Champaign Urbana, Department of Special Education, Champaign, Illinois 61820. Valerie J. Bradley, MA, President, Human Services Research Institute, Cambridge, MA 02140. Sharon C. Gomez, Quality Enhancement Officer, Evergreen Presbyterian Ministries, Inc., Lake Charles, LA 70601. Mark H. Yeager, PhD, Director, Division of Autism Spectrum Disorders, Mississippi Department of Mental Health, Jackson, MS 39201. Robert L. Schalock, PhD, Professor Emeritus, Hastings College, Department of Psychology, Hastings, NE 68901; and Adjunct Professor, University of Salamanca (Spain).