Implementation of disability policy is influenced by social, political, and cultural factors. Based on published work, this article discusses four guidelines considered critical for successful policy implementation from a cross-cultural perspective. These guidelines are to: (a) base policy implementation on a contextual analysis, (b) employ a value-based approach, (c) align the service delivery system both vertically and horizontally, and (d) engage in a partnership in policy implementation. Public policy should be understood from a systems perspective that includes cross-cultural issues, such as how different stakeholders are acting and the way they plan and implement policy.
The rationale for taking a cross-cultural perspective regarding policy implementation is that the successful implementation of disability policy is influenced by a number of cultural factors. These include the country or region's level of socioeconomic development, its democratic tradition, and the political will and predominant ideology of the current government. Additionally, policy implementation is influenced by a number of issues, including the approach to understanding disability, the structure and function of the service delivery system, the degree of organization and system transformation, and the content and focus of professional education and staff development (Schalock & Keith, 2016).
In addition, many disability policies are developed and implemented within a large geographical area. For example, the European Union Disability Strategy 2010-2020 (EU 2020; European Commission, 2010), which includes social- and disability-related policies, encompasses 28 countries that differ socially, politically, and culturally. This strategy tries to ensure effective implementation of the United Nations Convention on the Rights of Persons With Disabilities (UNCRPD; United Nations, 2006), and focuses on eliminating barriers and setting out a program in eight main areas of action: accessibility, participation, equality, employment, education and training, social protection, health, and external action.
Given the sociopolitical factors and cultural issues that affect policy implementation, this article discusses four guidelines considered critical for successful policy implementation from a cross-cultural perspective. These guidelines are to: (a) base policy implementation on a contextual analysis, (b) employ a value-based approach to services and supports, (c) align the service delivery system both vertically and horizontally, and (d) base policy implementation on a partnership. These four guidelines are based on published work regarding the role of context in policy development, implementation, and evaluation (Shogren, Luckasson, & Schalock, 2015, in this issue; Shogren, Schalock, & Luckasson, in press), the factors involved in organization transformation (Schalock & Verdugo, 2012b; Schalock & Verdugo, 2013; Schalock, Verdugo, & Lee, 2016), and the use of a systematic approach to policy development and systems change (Schalock & Verdugo, 2012a; Schippers, West, & Dawson, 2015).
Subsequent sections of the article discuss each of these four guidelines and incorporate examples from the EU 2020 Strategy to explain how the respective guidelines can positively impact policy implementation. The main topics and subtopics of the EU 2020 are summarized in Table 1.
Contextual analysis is a method for examining relevant characteristics of the environment that help to understand the barriers and opportunities for action. A contextual analysis can be done at the individual, organization, or systems level. The analysis identifies contextual factors making an impact on policy development and its application, and involves: (a) identifying contextual factors that hinder change; (b) conducting a discrepancy analysis that identifies the discrepancies between where a person, organization, or system is and where they would like to be, (c) identifying the forces for change that will increase momentum and receptivity, (d) identifying ways to promote policy implementation, and (e) identifying ways to increase stakeholder participation.
A contextual analysis is completed by knowledgeable respondents, including individuals with a disability, and is coordinated by a person with knowledge and experience in policy-related service/support planning and delivery. This collaborative approach is consistent with assessment approaches such as participatory evaluation, utilization-focused evaluation, and empowerment evaluation. The advantages of a collaborative approach to contextual analysis is that it not only provides an understanding of contextual factors that either facilitate or hinder change, but also fosters learning among participants and increases the likelihood that information obtained from the analysis will be incorporated into policy implementation and policy evaluation. Templates and examples of contextual analyses are presented in Schalock and Verdugo (2012a; in press), Shogren et al. (2015), and Shogren, Schalock et al. (in press).
Results from a contextual analysis provide important information for policy development and its implementation. Those involved in policy development, for example, will be most interested in addressing the factors that hinder change, the differences between what is desired and what is seen, and the powerful mechanisms available for creating change. Those focusing on policy implementation will find useful information related to the analysis of the powerful forces facilitating implementation, the specific strategies/mechanisms that promote implementation, and how major stakeholders can be involved. Table 2 presents an example of a contextual analysis of supported employment in Europe, based on the implementation of EU 2020 Disability Strategy.
Policy implementation should employ a value-based approach that establishes and defines core values and principles to guide the implementation agenda across countries. The UNCRPD focuses on rights to avoid discrimination against persons with disabilities and promotes participation and full inclusion in society. The content included in the convention comprises all aspects of a person's life. The UNCRPD establishes that governments should report and monitor the application of the convention, but how to do that can vary among signatories. In order to be useful to service and support professionals and organizations, and to simplify its implementation, the goals, objectives, and contents of the UNCRPD can be aligned with core quality of life (QOL) domains (Claes, Vandenbusshe, & Lombardi, 2016; Navas, Gómez, Verdugo, & Schalock, 2012; Verdugo, Navas, Gómez, & Schalock, 2012).
Because quality of life domains can be assessed at an organization level and aggregated at the systems level, alignment of policy goals to specific interventions and supports to enhance human functioning will maximize individual, family, organizational, and societal outcomes. The supports paradigm, aligned with value framework such as quality of life, is the main approach to advance the recognition of rights and to achieve good results in improving personal well-being of persons with intellectual disability and closely related developmental disabilities (IDD). The supports paradigm is based not only on paying attention to the views, dreams, opinions, and preferences of persons with IDD, but also involves “arranging systems of support that effectively address the mismatch between what people are able to do without extraordinary supports, and the requirements for human performance” to participate fully in society (Thompson, Schalock, Agosta, Teninty, & Fortune, 2014, p. 91). The main elements of a system of supports are: natural supports, technology, prosthetics, education across the lifespan, reasonable accommodations, dignity and respect, personal strengths/assets, and professional services (M. Lombardi, personal communication, January 17, 2017).
The increasing importance of the QOL concept as a value-based framework is already influencing policies and professional and organizational practices internationally (Brown, 2016; Keith & Schalock, 2016). The inclusion of the paradigm as the vision and mission of many organizations facilitates their transformation to be more effective and efficient policy implementers. Additionally, the use of evidence-based indicators of QOL domains also facilitates the evaluation of policies based on the UNCRPD articles (Schalock, Gómez, Verdugo, & Claes, in press; Schalock, Verdugo, & Gómez, 2011).
The role that professionals play to improve the quality of life of persons with IDD is paramount. Professionals (including direct support professionals) should become engaged with a value-based approach that focuses on personal well-being, combining the traditional clinical approach with a support approach based on the environmental variables on which a contextual analysis focuses. Ethics and professional responsibility should also be an important part of vocational training and professional values (see later section on Partnership in Policy Implementation).
As a part of their professional responsibilities, professionals need to believe that the quality of life of persons with disabilities can improve. To this end, behaviorally based QOL-related indicators can be used to reflect growth, development, and change (Bigby, Knox, Beatle-Brown, & Bould, 2014; Reinders & Schalock, 2014). These indicators can also guide observations and decisions about treatment or intervention options, and to develop in themselves and others the expectation that quality enhancement strategies will have a positive effect. Exemplary outcome indicators related to each of the core QOL domains are summarized in Table 3.
Horizontal and Vertical Alignment of the Service Delivery System
Alignment focuses on placing critical system and organization functions into a logical sequence of activitieswith the intention of facilitating description, explanation, and systematic analysis. A program logic model that connects input, throughput, output, and outcome components of a system can be used to establish critical indicators involved in conducting a discrepancy analysis as a basis for policy implementation (Schalock & Verdugo, 2012a).
In Figure 1, we expand a logic model policy framework to encompass the three ecological systems (individual-microsystem, organization-mesosystem, and system-macrosystem) that influence human functioning and impact individual-, organization-, and systems-level performance. In addition, we have depicted horizontal alignment within each ecological system (individual, organization, and system) and among system components (input, throughput, output, and outcome), and vertical alignment within each system component and across ecological systems.
In reference to the use of Figure 1, and if we focus on accessibility and independent living (two important areas of action of the EU 2020 Disability Strategy), we can observe the importance of establishing measures at the three ecological levels (micro, meso, and macro) through the different components of the program logic model. In this sense, independent living in the input component could be promoted by establishing personal goals regarding living arrangements (micro); allocating professional, financial, and services resources (meso); and developing directives and resources at the national and European level (macro). The other alignment components (throughput, output, and outcome) are also organized with measures that facilitate independent living. We also include accessibility measures in all the components and levels (see Figure 1).
Aligning a supports/service delivery system both horizontally and vertically will enhance policy implementation in three significant ways. First, horizontal alignment positions the supports/service delivery components into a logical sequence that will increase not just policy implementation but also allow for clearer communication and monitoring, reporting, evaluation, and continuous quality improvement. Second, vertical alignment increases the effectiveness and efficiency of policy implementation through the benefits derived from nonduplication, technical and administrative support, outcomes-focused rules and regulations, and strategic execution. Collectively, horizontal and vertical alignment enhances both policy implementation and policy evaluation (Schalock & Verdugo, 2012b; Schalock, Verdugo, Gómez, & Reinders, 2016). Success is the result of improving the connection among the critical functions of each system level, and a coordinated effort among the three different levels of the system.
A Partnership in Policy Implementation
Policy implementation needs to be both culturally sensitive and partnership based. A partnership is critical to successful policy implementation. In this section of the article, we discuss five key players and their respective roles in such a partnership: policy makers, professionals, support providers, consumers, and researchers.
In addition to basing disability policy on societal values, desired outcomes, and best practices, policy makers need to incorporate a “built environment framework” into disability policy. Such a framework provides the setting for human activity; mediates physical and social access to community resources; facilitates participation in community life and everyday activities and relationships; provides opportunities for self-determination; and allows individuals to build social capital, engage in competitive employment, and be more independent (Christensen & Byrne, 2014).
An important partner in developing European policy, besides the governments of each country, has been the European Disability Forum (EDF; http://www.edf-feph.org/). EDF is an independent nongovernmental organization that brings together the main representative organizations of persons with disabilities across Europe. The role of EDF has been decisive for promoting the United Nations Convention, rights, antidiscrimination legislation, accessibility, education, employment, health, and independent living of persons with disabilities.
Professionals, including direct support professionals, play a significant role in the lives of persons with a disability. They diagnose, they support, they recommend, and they influence attitudes, actions, and policies. Professional responsibility starts with respect for the individual and is characterized by giving focused attention to the person, showing concern for the person, emphasizing the person's human and legal rights, and engaging in person-centered practices that facilitate personal well-being. Respect involves supporting personal autonomy; informing people about important matters in their lives; involving people in individual supports planning and provision; providing opportunities for personal development and involvement; and ensuring an individual's emotional, physical, and material well-being (Arias, Arias, Verdugo, Rubia, & Jenaro, 2016). Critical components of professional responsibility involve being aware of current international trends impacting the field, being well trained in current best practices, acting in accordance with a code of ethics, and exercising the critical thinking skills of analysis, alignment, synthesis, and systems thinking (Schalock & Luckasson, 2014).
EU 2020 Disability Strategy contains two important domains where professionals are of maximum importance: statistics and data collection, and awareness and external action. Research development, sophisticated analysis of data, and use of equality indicators are some of the more important areas of action to know and improve the actual situation of persons with disabilities. Without data, one cannot distribute resources appropriately per different support needs, train professional and support staff, nor evaluate results and outcomes of public policies.
Support providers include organizations (including community-based rehabilitation programs), front line staff, and the families of individuals with a disability. To be maximally effective in policy implementation, support providers need to do two things. First, they need to believe that the quality of life of persons with disabilities can improve, as reflected in the outcome indicators listed in Table 3. Second, they need to implement value-based practices related to a policy framework (see Table 1; Schalock, this issue). Four such practices are to: (a) view the person with a disability as central; (b) align individual-, organization-, and systems-level input, throughput, output, and outcome components both horizontally and vertically; (c) provide individualized supports that are aligned with personal goals and assessed support strategies; and (d) focus on personal and societal outcomes.
These four practices are based on the premise that any disability-related and person-environment related mismatch that results in needed supports can be addressed through the judicious use of individualized supports rather than “fixing the person.” Individualized supports help to bridge the gap between “what is” and “what can be” and result in approaching people based on their types and intensities of support needs, rather than their limitations or diagnoses (Nussbaum, 2011; Thompson et al., 2014).
The delivery of individualized supports needs to be done in a rational way. Depending on the circumstances, some type of individual supports plan is developed for the person and implemented by one or more support providers. As commonly employed, an individual support plan includes: (a) an organizing framework (e.g., life activity areas, human functioning domains, quality of life domains); (b) prioritized support areas based on what is important to and for the individual; (c) support strategies reflecting components of a system of supports; (d) support objectives that integrate the specific strategy used and the intended result of that strategy; and (e) personal outcome categories (e.g., life activity areas, human functioning dimensions, or quality of life domains).
Strengthening an organization's commitment to supporting and assisting persons with IDD is essential in improving consumers' personal well-being. Only if organizations assume a leadership role in implementing changes toward new approaches that are based on supports needed and environmental variables, can the lives of persons with disabilities improve. In Europe, the trend toward community services based on supports is progressing. The national disability strategies and plans of each country, as well as the actions of the more representative nongovernmental disability organizations (e.g., European Disability Forum, European Association of Service Providers for Persons with Disabilities), are aligned in planning and implementing different actions to increase opportunities and exercise individual rights.
An essential member of the partnership is the consumer. Although their critical and essential role is often overlooked, persons with a disability are increasingly becoming more actively involved in policy implementation. This increase is due to several factors, including the increased rights of persons with a disability, the inclusion of the QOL concept in service delivery policies and practices, and the findings that people with a disability have competencies and capabilities that are frequently ignored or stymied (Keith & Schalock, 2016; Mostert, 2016; Nussbaum, 2011).
What does it mean for consumers to be more active in policy implementation? From a systems perspective, it means that the individual is involved in the input, throughput, and output phases of support planning and implementation. More specifically, during the input phase, a dialogue should occur during which the individual expresses their personal goals and support needs. At the throughput stage, the individual is involved in developing, implementing, and monitoring their support plan. At the outcome phase, the individual is involved in the assessment and evaluation of valued, personal outcomes.
The European Platform of Self Advocates (EPSA [http://self-advocacy.eu/], part of Inclusion Europe [http://inclusion-europe.eu/]) has included groups of self-advocates with IDD from more than 15 European countries since 2000. EPSA actively promotes rights of people like any other citizen, and develops actions related to many different topics, such as independent living and deinstitutionalization, empowering women and girls, accessible transports, and access to culture and leisure.
Researchers need to work with organizations and systems to increase their implementation fidelity and their evaluation capacity. This entails developing data systems and data collection procedures that allow for the assessment of policy-desired outcomes that can be used to determine the relations between organization services/supports and policy-desired outcomes. In addition, researchers need to work with both policy makers and service/support providers in implementing an evaluation model that allows for both formative and summative policy evaluation (see Claes, Ferket, Vanevelde, Verlet, & De Maeyer, this issue).
The Academic Network of European Disability Experts (ANED) is an academic research network of all European countries that was created by the European Commission in 2007. ANED supports the decisions of the commission and the different European countries through the provision of “independent scientific advice, analysis and information on EU and national disability policies and legislation, links of national policies with the EU level, as well as information about the situation of persons with disabilities” (Academic Network of European Disability Experts, 2017; http://www.disability-europe.net/). ANED collaborates with experts of the commission to advance objectives of the European disability policy related to the implementation of the UNCRPD, and present research reports every year to assess the mainstreaming of disability in EU laws and policies on different areas such as employment, education, health, accessibility, and social protection. This Disability Online Tool of the Commission (DOTCOM; http://www.disability-europe.net/dotcom) is a large database developed by ANED that includes policies, laws, norms, strategic plans, and initiatives of each European country.
Implementation of public policy for persons with IDD should consider how different stakeholders are acting and the way they plan and implement actions. Public policy should be understood from a systems perspective and focus, not only on government and administration rules and tasks, but also on the role social organizations play and how value-based practices are being synchronized. Thus, before any policy is implemented, a contextual analysis should be completed at the individual, organization, and systems level. Analysis of available data along with perceptions and opinions of main stakeholders, including persons with disabilities and their families, is of critical importance. A collaborative assessment and planning approach is the best way to involve the key persons who will promote or successfully lead the implementation efforts.
Developing and implementing disability policies should be based on values and principles to guide actions. Since 2006 in Europe and worldwide, the UNCRPD has provided a framework and principles based on human rights to avoid discrimination against persons with disabilities and to facilitate their inclusion in the community. As proposed in this article, a quality of life approach is a recommended values-based framework that aligns with the UNCRPD Convention articles (Navas et al., 2012; Schalock, Verdugo, Gómez, & Reinders, 2016; Verdugo et al., 2012). Thus, a QOL framework is capable of simplifying the structure of the convention by aligning the content of its articles with QOL-related supports to be provided and indicators to be measured.
Two important steps in implementing public policies for persons with IDD are to align services and supports horizontally and vertically through a logical sequence, and to involve stakeholders as partners. In all phases of the process, the active participation through a partnership with policy makers, professionals, support providers, researchers, consumers, and their families, is a prerequisite condition.
This study was supported in part with funding from the Spanish Ministry of Economy and Competitiveness (PSI2015-65193-P).