Review article
Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation

https://doi.org/10.1016/j.ridd.2014.10.008Get rights and content

Highlights

  • Our review of social inclusion literature finds several conflicting definitions.

  • Hence, we propose a definition and ecological model of social inclusion.

  • Our definition focuses on interpersonal relationships and community participation.

  • Our ecological model includes individual, interpersonal, and community variables.

  • We describe future research that our definition and ecological model can inform.

Abstract

Social inclusion is an important goal for people with intellectual and developmental disabilities, families, service providers, and policymakers; however, the concept of social inclusion remains unclear, largely due to multiple and conflicting definitions in research and policy. We define social inclusion as the interaction between two major life domains: interpersonal relationships and community participation. We then propose an ecological model of social inclusion that includes individual, interpersonal, organizational, community, and socio-political factors. We identify four areas of research that our ecological model of social inclusion can move forward: (1) organizational implementation of social inclusion; (2) social inclusion of people with intellectual and developmental disabilities living with their families, (3) social inclusion of people along a broader spectrum of disability, and (4) the potential role of self-advocacy organizations in promoting social inclusion.

Introduction

A major obstacle for achieving the goal of social inclusion for people with intellectual and developmental disabilities is that the concept of social inclusion remains unclear (Amado et al., 2013, Bigby, 2012a, Bigby, 2012b, Cobigo et al., 2012, Duggan and Linehan, 2013, Hall, 2009, Overmars-Marx et al., 2014). The lack of clarity results from the numerous definitions of social inclusion, which can make the concept interchangeable with social integration, social network, community participation, and social capital. The variation between definitions impedes effective service delivery and interventions, and leads to insufficient data about its effective implementation (Duggan and Linehan, 2013, Martin and Cobigo, 2011). Moreover, the conceptual ambiguity of social inclusion hinders communication across key stakeholders – such as individuals with disabilities, family members, service providers, researchers, and policymakers – who may disagree over the meaning and purpose of social inclusion (Clement & Bigby, 2009).

Despite these issues, social inclusion remains an important element of well-being for people with intellectual and developmental disabilities (Buntinx & Schalock, 2010) and a key component of the United Nations Convention on the Rights of Persons with Disabilities (Quinn & Doyle, 2012). However, people with intellectual and developmental disabilities continue to experience high rates of social isolation (Bigby, 2008, Forrester-Jones et al., 2006, Milner and Kelly, 2009, Robertson et al., 2001), and their social networks are comprised mainly of family members and professionals (Lippold & Burns, 2009). Because enhancing social inclusion begins with a clear definition, this paper (1) conceptualizes social inclusion and (2) provides an ecological model of the many factors that promote it.

A clear definition of social inclusion can facilitate communication across service providers, policymakers, and multidisciplinary researchers (Buntinx & Schalock, 2010). In addition, a clear definition can help standardize the multiple ways that researchers measure social inclusion (Amado et al., 2013). Finally, redefining social inclusion can respond to the fact that web-based technologies have changed communities and social networks since the inception of social inclusion research in the 1970s (Clegg, 2010). Fig. 1 Column 1 lists definitions of social inclusion found in the literature in the last 10 years. Interpersonal relationships and community participation emerge as common themes, but conceptual differences emerge around the (1) scope, (2) setting, and (3) depth of social inclusion.

The scope of the definition refers to the kinds of activities, relationships, and environments that social inclusion encompasses, and definitions range from narrow to broad in scope. For example, Clement and Bigby (2009) followed a narrow definition of social inclusion when they aimed to “expand people's social networks by facilitating relationships with people who are not staff members, relatives, or people with intellectual disabilities” (p. 266). They narrowed the scope in two ways: first, they excluded relationships with certain groups (staff, families, and people with ID), and second, they discounted community activities as a component of social inclusion, although they presumed that relationships with community members would encompass community involvement.

In contrast, broad conceptions of social inclusion can involve being accepted as an individual beyond disability, significant and reciprocal relationships, appropriate living accommodations, employment, informal and formal supports, and community involvement (Hall, 2009, Power, 2013). McConkey and Collins (2010a) charted a middle course by focusing on two components: social interaction and community participation (2010, p. 692).

Differences in the scope of social inclusion highlight the different settings in which social inclusion may take place. The interpersonal dimension of social inclusion – such as social interaction, relationships, and social networks – could take place in a private setting – such as the person's home – and researchers have thus measured the number and quality of a person's friendships (McVilly, Stancliffe, Parmenter, & Burton-Smith, 2006). In contrast, many definitions encompass access to community facilities and community participation, which gives social inclusion a public dimension. Hence, even if someone had a high number of friendships, their level of social inclusion would be deficient if they had no access to the community. By emphasizing community settings, researchers underscored the value of forming relationships with nondisabled people in mainstream settings (Bates & Davis, 2004). But researchers have also argued that segregated settings may benefit people with intellectual and developmental disabilities by offering a sense of belonging, friendship, and safety (Hall, 2010, Milner and Kelly, 2009).

This emphasis on belonging touches on the depth of the definition of social inclusion, as some researchers have focused on objective measurements (such as the number of friendships), and others have focused on subjective measurements (such as the level of satisfaction). Others aim to integrate both subjective and objective elements, similar to quality of life research (Verdugo, Schalock, Keith, & Stancliffe, 2005). For example, Cobigo et al. defined social inclusion with significant depth when they insisted that a person must (1) have a sense of belonging in a social network within which they receive and contribute support, (2) that they experience a valued social role, and (3) that they are trusted to perform that social role in the community (2012). Similarly, Walker et al. (2011, p. 15) defined social inclusion as “societal acceptance of people with disabilities within school, work, and community settings.” This definition shifts attention to the subjective attitudes of nondisabled people toward people with disabilities.

Research on levels of satisfaction of supports and services have relied primarily on people with higher IQs and lower support needs (Copeland, Luckasson, & Shauger, 2014). This is problematic as some research has suggested that people with different levels of intellectual and developmental disabilities experience social inclusion differently. For example, people with mild and severe intellectual and developmental disabilities may be most at risk of social isolation (McConkey, 2007). People with moderate intellectual disability have reported that they prefer to form close friendships with other people with intellectual or developmental disabilities (McVilly, Stancliffe, Parmenter, & Burton-Smith, 2006). In contrast, people with severe to profound intellectual and developmental disabilities were more likely to form relationships with nondisabled family members and staff (Bogdan and Taylor, 1989, Whitehouse et al., 2001).

When definitions of social inclusion multiply and diverge from one another, then the concept of social inclusion becomes interchangeable with other concepts, as represented in Fig. 1, Column 2. These concepts include social interaction, social network, social capital, community participation, independent living, and a sense of belonging (Amado et al., 2013, Cobigo et al., 2012, Duggan and Linehan, 2013, Rimmerman, 2013). Conceptual ambiguity poses opportunities and challenges to researchers. On the one hand, conceptual open-endedness invites researchers to take different approaches to social inclusion that yield diverse interventions to promote it (Davis, 2008). On the other hand, the interchangeability of social inclusion with other concepts raises similar problems to its multiple definitions, such as confusion across stakeholders, numerous and conflicting measurements, and the inability to distinguish between the definition, outcomes, and processes of social inclusion.

When researchers, policymakers, and people with intellectual and developmental disabilities define social inclusion primarily through interpersonal relationships, then social inclusion becomes interchangeable with social interaction or social networks. One of the main problems of defining social inclusion as social interaction is that social interaction is an interpersonal concept without any community dimension.

Definitions of social inclusion can also overlap with the concept of community participation, in part, due to equally expansive definitions of community participation. Take, for example Verdonschot, de Witte, Reichrath, Buntinx, and Curfs (2009) who defined community participation as involvement in “(1) domestic life, (2) interpersonal life, (3) major life areas consisting of education and employment, and (4) community, civic, and social life” (p. 304). By including domestic and interpersonal life within their definition, Verdonschot et al. dissolved the distinction between a person's social network and their involvement in the community.

Social inclusion can also become interchangeable with social capital. This occurs when the definition of social inclusion includes benefits like increased trust, reciprocity, and personal efficacy that may result from social networks and community involvement. Social capital, like social inclusion, is a complex concept with multiple definitions (Phillips, Robison, & Kosciulek, 2014). Robert Putnam defined social capital as “features of social life – networks, norms, and trust – that enable participants to act together more effectively to pursue shared objectives” (Putnam, 1995, 664–665). Elsewhere, however, Putnam defined social capital as “networks and the associated norms of reciprocity [that] have value” (2001, p. 1). Similar to strains in social inclusion, Putnam collapsed having interpersonal relationships/community involvement into the effects of these relationships/activities.

When definitions of social inclusion encompass subjective feelings of belonging, value, and acceptance, then social inclusion becomes interchangeable with a sense of belonging. Some scholars have embraced a sense of belonging over social inclusion, arguing that social inclusion without a sense of belonging misses the fact that social inclusion in mainstream settings may decrease a person's quality of life (Hall, 2010). When Power (2013) argued that belonging “does not solely involve being placed within an environment, but fitting in within a specified place or environments,” he challenged social inclusion approaches that rely on objective and quantitative measurements (p. 69; Hall, 2010, Cobigo et al., 2012). Emphasizing the subjective component of social inclusion is important, but replacing social inclusion with a sense of belonging may tell us little about the actual level of involvement of people with disabilities in their communities or their social networks.

Finally, Duggan and Linehan (2013) argued that the concept of social inclusion has become interchangeable with independent living. Broad definitions of social inclusion include independent living within the scope of the definition (Hall, 2009, Power, 2013). Quinn and Doyle argued that independent living and social inclusion are interrelated and that the Convention on the Rights of Persons with Disabilities promotes independent living through “enhancing social connectedness” (2012, p. 15). Our review of social inclusion suggests that the concept is also interrelated with community participation, belonging, and social interaction. Thus, while narrow conceptions deemphasize the community, broad definitions of social inclusion become interchangeable with community participation, social capital, and belonging. While conflicting definitions may make it difficult to measure and implement social inclusion, it also raises questions about the purpose of social inclusion.

As descriptions of social inclusion have expanded, so too have its aims, as can be seen in Fig. 1, column 3. Reviewing the many different purposes attributed to social inclusion reveals the conceptual complexity embedded in the concept. This complexity arises due to the ways in which social inclusion is not only a personal issue, but also an issue of civil rights, equality, and economics. Consequently, who benefits from social inclusion varies across definitions. Most often, the beneficiary is the person with an intellectual and developmental disability. However, beneficiaries may also include people with intellectual and developmental disabilities as a group and to members of society more broadly.

Many have conceptualized individuals as the primary beneficiary of social inclusion. People with intellectual and developmental disabilities have identified increased opportunities for friendship and community involvement as important goals (Abbott and McConkey, 2006, Kampert and Gorerczny, 2007). Researchers have argued that social inclusion promotes happiness, self-esteem, confidence, mental health (Forrester-Jones et al., 2006), well-being (Johnson, Douglas, Bigby, & Iacono, 2012), and decision-making capacity (Johnson, Douglas, Bigby, & Iacono, 2009). Essentially, social inclusion improves lives – for people with and without disabilities (Mahar et al., 2013, Mansell et al., 2002).

Social inclusion may also offer benefits to people with intellectual and developmental disabilities as a distinct social group. For instance, researchers have suggested that promoting social inclusion can enable people to contribute to society (Overmars-Marx et al., 2014), overcome social exclusion (Mahar et al., 2013, McConkey and Collins, 2010a), combat poverty, unemployment, and poor access to healthcare (Power, 2013), and enhance community safety and protect against abuse (Power, 2013, Quinn and Doyle, 2012). In contrast to research documenting individual outcomes of social inclusion, these broad-based outcomes are less supported by data. To accomplish these goals, it is likely insufficient if some individuals with disabilities are socially included. While these individual benefits are important, they are likely inadequate to overturn societal-wide exclusion and discrimination. Hence, these purposes intensify the scale of social inclusion in order to counter the marginalization of people with intellectual and developmental disabilities as a social group.

Individual and group-based benefits from social inclusion, however, hinge upon broader changes in the attitudes and behaviors of society. Indeed, many people with intellectual and developmental disabilities have reported that negative community attitudes impede social inclusion (Abbott & McConkey, 2006). Researchers have suggested that social inclusion can decrease negative attitudes, stereotypes, stigma, and discrimination against people with intellectual and developmental disabilities (Johnson et al., 2009, Mahar et al., 2013, Power, 2013). Research seldom investigates the relationship between social inclusion and public attitudes, but because contact with people with disabilities is a consistent predictor of more positive attitudes, then increased levels of social inclusion may decrease negative attitudes (Sharma, Forlin, Loreman, & Earle, 2006). Social inclusion also fulfills the aims of national and international public policies and mandates. Thus, many authors acknowledged that social inclusion complies with the Convention on the Rights of Persons with Disabilities and national policies (Cobigo et al., 2012, Duggan and Linehan, 2013, Mahar et al., 2013, Martin and Cobigo, 2011, Overmars-Marx et al., 2014, Power, 2013, Quinn and Doyle, 2012).

So, who is social inclusion for? Social inclusion is for all of us: an individual with an intellectual or developmental disability; for people with intellectual and developmental disabilities as a group; for members of society who will benefit from their inclusion; and for nation states who can benefit from the participation of people with all levels of abilities. If social inclusion is to accomplish all this, then we need a clear and accessible definition.

Section snippets

Social inclusion defined

Our model of social inclusion, shown in Fig. 2, focuses on two domains – interpersonal relationships and community participation. Within each domain, we define important categories that capture the structural and functional components behind social inclusion. Interpersonal relationships and community participation recur in the social inclusion literature (Asselt-Goverts et al., 2013, McConkey and Collins, 2010a), are central to a person's quality of life (Schalock et al., 2005), and both are

Ecological pathways to and from social inclusion

As shown in Fig. 3, we take an ecological approach to social inclusion to capture how individual, interpersonal, organizational, community, and socio-political variables influence interpersonal relationships and community participation (Overmars-Marx et al., 2014, Verdonschot et al., 2009). An ecological model of social inclusion fits with broader trends in the developmental disabilities field that understand disability as itself a product of individual, environmental, and social factors (

Recommendations & next steps

The conceptual ambiguity of social inclusion invites both narrow and vast definitions of the concept. Narrow definitions undercut the social and political purposes of social inclusion, whereas vast definitions threaten to become too demanding, thus inviting some stakeholders to conclude that social inclusion may be for some people with disabilities, but not all. Therefore, our definition focuses on two recurring themes in the literature: interpersonal relationships and community participation,

Conclusion

Our ecological model provides a comprehensive and coherent model of social inclusion that encompasses the complex array of factors that affect social inclusion. Future research should focus on designing and promoting interventions that can increase the quantity and quality of social inclusion for people with intellectual and developmental disabilities in our communities.

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    The first author is a recipient of the Hegarty Postdoctoral Research Fellowship which is supported by Michigan State University, USA and the DOCTRID Research Institute (Daughters of Charity – Technology, Research Into Disability) Dublin, Ireland.

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