Public Policy and the Enhancement of Desired Outcomes for Persons With Intellectual Disability

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: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).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: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.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.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.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 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 Gómez, Verdugo, Arias, and Navas (2008); National Core Indicators (2003; Bradley 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),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 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 Kahn 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).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 the within the field of intellectual disability from a 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 these outcome domains and exemplary indicators in information that is to the quality with its focus on valued and the with its emphasis on outcomes rather than and processes and the use of information as a basis for quality management and quality outcomes can also be as indicators of systems As depicted in Figure 1, changes in practice or in the public systems that are 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 can be at the and/or systems level to provide a performance or a measure of systems change Schalock et al., 2007). For example, the National Association of of Developmental Disability Research National Core Indicators that include a of personal, rather than outcomes. are this and data on the outcomes of over individuals are Similarly, organizations such as the Council on Quality and Leadership are personal outcomes as an and component of the that include of quality of personal outcomes are also being used in at least for meeting accountability and public and providing the basis for quality improvement & data such as those by (e.g., can also be used to systems For example, in evaluation of systems the major indicators used (a) of services by (b) trends in intellectual and developmental disability community services, individual and family and (c) of persons in and (d) of persons in and personal there is a need to two systems change access to services (e.g., and and the of specific services across these outcome classes and change indicators in information that is to changes in our understanding of intellectual disability and our growing recognition of the importance of individualized supports to the enhancement of human understand the potential of the 11th edition of the AAIDD's Diagnosis, Classification, and Systems of Supports Manual (working title) to influence public policy it is critical to understand the multiple factors that influence these outcomes. of factors are those depicted as “inputs” in Figure social factors, core of disability policy, and a of intellectual disability. in public policy from these lead to changes in which in turn have an impact on desired public policy outcomes. As also shown in Figure 1, a focus on outcomes can the information that is generated by public systems and, influence the information that the development of public policy. the relationship between public policy and practice is second of factors are the multiple systems within which people are and As shown in Figure which is based in part on conceptualization of human the factors, disability core and of are operationalized through the multiple within which individuals the social including the family, and the neighborhood, community, or organizations providing education and support and the of and influences The person and these multiple systems over time individual and outcomes are by these For example, at the societal, or the core of rights can be a on the part of society to outcomes such as and the community and support or the of rights can be as the of and by community organizations and support providers to people with intellectual disability and their the individual, or rights can be through the of and people with intellectual disability regarding whether their human rights have been over time changes in how rights for people with intellectual disability are and across of the system. For example, changes in society (e.g., the rights can with changes in how supports and services are and (e.g., more people with intellectual disability in the to in the nature of the rights to the of of the at level of the influences the of the at the other of the over time. For example, the core of rights be in public policy at the societal level and through to the other of the social context (e.g., support providers a of rights for the individuals they an individual to access to a public changes at the or level can also and lead to changes at the societal level (e.g., an individual with a disability about the rights other and to for change in public policy and a support implementing a that to positive outcomes that it then to guide the development of public policy related to the multiple factors that influence the adoption and implementation of public policy can significant change on practice in the field. For example, the supports a 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 has also an impact through level of the social context by public policy, practice, and the outcomes experienced by these persons and their (Turnbull et al., discussed in to 1 and policy outcomes are critical to understanding the and outcomes of public policy. As shown in Figure 1, outcome data provide feedback to regarding the effectiveness of a policy and important information that can be used by organizations and systems for quality quality and quality As shown in Figure there is an interactive relationship between outcomes and the multiple systems and that impact This systems perspective provides the framework for the outcome classes discussed in the section of this article: personal and family systems change and societal proposed framework for understanding how the 11th edition of AAIDD's Manual can impact public policy outcomes the following social factors have influenced the adoption and implementation of public policy people with intellectual disability. among these factors are legal research, and in regarding the nature of disability and we understand these impact on public policy, we are in a to promote policies and practices regarding persons with intellectual disability that will enhance their and, desired public policy addition to the social factors public policy and its adoption and the core principles guiding disability policy, the intent of this article is to desired policy outcomes that we as outcomes related to the the family, and the service delivery system. these desired policy outcomes are policies and practices can be at their evaluation and 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 public policy outcomes. This framework related to best a approach to classification and supports current policies and policy and feedback generated by the assessment of desired policy outcomes at the personal, family, societal, and systems change