Community Inclusion for People with Intellectual and Developmental Disabilities: A Call to Action for Social Work

Many people with intellectual and developmental disabilities (IDD) are isolated and lack meaningful opportunities to participate and develop social networks within their communities. Sharing membership with a community that fosters connection and belonging is essential to well-being. As a human rights profession, social work is uniquely situated to overcome the macro barriers that prevent full community inclusion for people with IDD. However, the experiences and needs of those with IDD have largely been left out of the profession’s discourse on diversity and oppression. This article presents a call-to-action for social work to engage in strategies and solutions to resolve macro barriers to community inclusion, to dismantle the injustices that people with IDD continue to experience, and to move the promise of community inclusion from rhetoric to reality. Social workers can promote community inclusion for people with IDD through a variety of approaches, including using a human rights-based framework, aligning with personcentered planning, fostering evidence-based practices, using participatory action research, increasing disability content in social work curricula, and engaging in community action and advocacy.

critical areas for the profession to address through a call-to-action (Williams, 2016). Two of the 12 challenges -eradicate social isolation and achieve equal opportunity and justice -are central to the quality of life for people with IDD. Thus, it is important to consider: How can social work eradicate social isolation and strive to achieve equity for people with IDD through community inclusion?
This article presents a call-to-action for the social work profession to respond to these grand challenges. We identify and discuss a series of strategies for the profession to embrace as ways to overcome the historic and contemporary barriers to community inclusion that people with IDD have encountered. Before proceeding, however, the breadth of disabilities and inconsistencies in defining inclusion necessitate explicit definitions to ensure a common understanding across readership.

Definitions
Intellectual and Developmental Disabilities. According to the American Association on Intellectual and Developmental Disabilities (AAIDD; 2021) intellectual disability is a lifelong condition characterized by limitations in both intellectual functioning and adaptive behavior that originates prior to age 22. More broadly, developmental disability is a term that includes intellectual disability, but is also inclusive of other cognitive and/or physical disabilities that present during development and are usually lifelong, such as Down syndrome, autism, and cerebral palsy (Arc of Indiana, 2021). Collectively, the trajectory of these disabilities, despite their pervasive nature, can be greatly enhanced with individualized supports and services, such that people with IDD can live independent, productive, and meaningful lives (AAIDD, 2021).

Community Inclusion.
Community inclusion is defined as having full and equitable access to activities, social roles, relationships, and community belonging and membership (Cobigo et al., 2012). Inclusive communities fully embrace people with IDD and their families, ensure equal opportunity for full participation in community life, and promote a sense of full belonging. This shared membership fosters connection and promotes physical and mental wellness, as well as optimal quality of life (Dahan-Oliel et al., 2012).

Social Exclusion as a Reality for People With IDD
Community inclusion is a right for all people, however, for people with IDD this right often goes unfulfilled. Social movements, like the Disability Rights Movement, and federal legislation, such as the ADA, have fostered significant advances for persons with disabilities. Collectively, they have fostered the recognition of the importance of community inclusion; increased physically accessible environments; and improved access to education, employment, and other community-based services that promote inclusion and well-being (McCarthy, 2003). Yet, despite the individualization of supports and services and their integration of multiple life domains (e.g., education and employment; Stancliffe et al., 2000), people with IDD continue to experience discrimination, marginalization, and rights violations as evidenced by community segregation, poverty, healthcare disparities, and exclusion in education and the workforce (Amado et al., 2013;Glen, 2015;Metzel & Walker, 2001;Mitra et al., 2013;United Nations, 2007). Even after the passing of more than 50 years since the commencement of deinstitutionalization, many people with IDD do not experience meaningful participation in their community and continue to lack supportive social networks and endure the ill-effects of exclusion (Macdonald et al., 2018;World Health Organization, 2011). Although most people with IDD now live in the community, it is evident that physical inclusion has not translated to true, meaningful community inclusion (Scior et al., 2020).

A Call to Action for Social Work
Social work has served an integral role in advancing the quality of life for people with IDD. From the early days of poor houses to contemporary practices of early intervention and parent training, advocacy and case management, and assessment and counseling, people with IDD have benefited from many supports and services provided by the social work profession (John & Schrandt, 2019;Mackelprang, 2013). However, even with such supports and services, people with IDD continue to be marginalized and excluded from full community inclusion (Macdonald et al., 2018;Scior et al., 2020). The fulfillment of their right to community inclusion is challenged by barriers of prejudice rooted in ableism and paternalism, systemic adherence to the medical model of disability, a lack of clarity in defining community inclusion, limited evidence-based practices to promote community inclusion, and a disconnect between disability-related policy and practice. Each of these barriers is briefly reviewed in Table 1.
Although the social work profession is integral in fighting inequality and injustices experienced by diverse populations, leading social work organizations like the Council on Social Work Education (CSWE) and NASW give little acknowledgement to disabilities as social issues or as contributing to human diversity (Kattari et al., 2017;Mackelprang, 2010). Likewise, social work curricula frequently lack disability content or opportunities for specialization in disabilities (John & Schrandt, 2019;Kim & Sellmaier, 2020). Although the profession has made some advances (e.g., Curricular Resource on Issues of Disability and Disability-Competent Care; CSWE, Disability-Competent Care Curriculum Workgroup, 2018), additional efforts are warranted to bolster social work with the disability community (John & Schrandt, 2019).
Through various domains and strategies, social workers can create significant momentum in furthering the quality of life and inclusion for people with IDD. These domains include using a human rights-based approach, aligning with person-centered planning, fostering evidence-based practices, using participatory action research (PAR), increasing disability content in social work curricula, and furthering community action and advocacy. Each of these domains with corresponding examples of practical strategies that social workers can use are described in Table 2.  Dignity of risk & the right to self-determination are often overshadowed by historical protectionist systems or superseded by caregivers' duty to care (Glen, 2015).  Paternalism has resulted in the exclusion of people with IDD from life decisions, directing their services, & from acting on their own behalf (Glen, 2015); "everything for the people, but without the people" (Román, 2010, p. 127).

Medical model of disability
 Disability is equated with physical and/or mental impairments that result in functional limitations that inhibit the ability of people with IDD to function effectively in society (e.g., work, live independently, etc.).  The government's role is to assist people with IDD through financial support & rehabilitative services to overcome these limitations (Scotch, 2000).  This model takes a needs-based approach, is diagnosis driven, & focuses on treating disability rather than removing structural barriers (Degener, 2016).  The full realization of the social model of disability, which recognizes society as the primary cause of disablement continues to be compromised by the medical model that has endured over time (Scior et al., 2020). Lack of clarity in defining community inclusion  Scholars & practitioners have failed to distinguish community inclusion from community integration, participation, & belonging (Amado et al., 2013).  The absence of a clear definition has resulted in limitations with assessing the extent to which providers achieve inclusion for the persons they support (Cobigo & Stuart, 2010). Lack of evidencebased practices (EBP)  EBP involve "a process in which the practitioner combines well-researched interventions with clinical experience, ethics, client preferences, & culture to guide & inform the delivery of treatments & services" (NASW, 2020, para 5).  Interventions & practices have often originated in the general population & have lacked sensitivity to disability identity and culture. As such, they frequently require adaptations to be effective (Andrews et al., 2019;Keesler, 2020).  The efficacy of disability services in facilitating community inclusion is unclear due an absence of evaluation & research. EBP for community inclusion are needed to counter the effects of exclusion & its infringement on human rights (Bogenschutz & Amado, 2016;Schalock et al., 2017). Disconnect between policy & practice  Community inclusion is often a primary goal for community-based services for people with IDD; however, many services are provided in segregated spaces (e.g., day programs) for people with disabilities (Merrells et al., 2019).  Services tend to focus on community presence & often result in little interaction with the broader community (Clement & Bigby, 2008).  Community inclusion for people with IDD is often predicated upon support from family or paid caregivers. As such, numerous challenges can arise such as aging parents, & turnover & vacancies among paid caregivers (Larson et al., 2016).  There is a systemic lack of understanding regarding disability & disability issues among community members & policy makers (Amado et al., 2011).  Dismantle segregation by actively engaging in evaluation of policies, practices, & programs that keep people with IDD from being fully included in their communities & advocate for inclusive practices (e.g., advocate to end programs that segregate people with IDD).  Critically examine disability agency policies & practices to ensure they are in alignment with human rights standards (e.g., CRPD; United Nations, 2007).  Provide rights-based training to people with IDD to promote knowledge of rights & to foster self-advocacy in exercising rights & seeking retribution when their rights are violated (Lord et al., 2007). Intentionally Align with Person-Center Planning (PCP)  Practicing PCP means respecting & upholding individual preferences & choices, even when these may conflict with agency policy & practice. This is critical as people with IDD are often denied choice in where they live, who they live with, & how they participate in their communities (Inclusion International, 2012;Tondora et al., 2020).  Elevate the voices of people with IDD & respect them as the expert on their life (e.g., "do with, not for"). PCP opposes approaches that exclude people with IDD from making life decisions & self-directing their services (Tondora et al., 2020).  Engage in supported decision-making when guardianship laws & practices conflict with PCP. Supported decision-making is a tool that helps people with IDD maintain their ability to make decisions on their own behalf & communicate these to their supports (Shogren et al., 2017). Foster Evidence-Based Practices  Advance EBP in the disability sector through the development of university-community partnerships that aim to foster stronger, more inclusive communities by bringing together the expertise & resources of multiple stakeholders (Jones et al., 2016).  Engage in person-centered outcome evaluation to ensure alignment among current values, understanding, & best practices (Schalock & Luckasson, 2021 (Goodley, 2010;Fuld, 2020).  Offer increased opportunities for students to become involved in the disability sector through internships and/or field placements (Dinecola & Lemieux, 2015 (Scior et al., 2020).

Applying a Human Rights-Based Approach.
Despite the often-perceived progressive nature of social work, the profession has frequently maintained a focus on the medical model and a needs-based approach (Mapp et al., 2019;Ogden et al., 2017). The medical model pathologizes disability as deviation from the norm, is diagnosis-driven, and focuses primarily on treating or rehabilitating disability. While the medical model remains deeply engrained in practices for people with IDD, there has been some movement, albeit slow, to integrate the social model of disability (Oliver, 1996) into social work education and practice (Morgan, 2012). The social model considers disability as a social construct created through discrimination and oppression. Understanding disability as a social construct shifts the focus from treating the individual to addressing societal barriers that keep people with IDD marginalized. The social model of disability also acknowledges the importance of civil rights; however, it is not fundamentally a rights-based approach to disability.
Notably, the development of the United Nations CRPD in 2006 brought with it a shift to a human rights model of disability. In contrast to the social model, the human rights model encompasses all human rights: civil, political, economic, social, and cultural rights, and does not view disability as a hinderance to human rights. Rather, the human rights perspective considers neurodiversity as a valued extension of the human experience (Degener, 2016). As such, persons with IDD are equal to others and are therefore entitled to community inclusion. Any social or environmental barriers that prevent people with IDD from realizing their right to inclusion are considered to be discriminatory and must be dismantled. Within this approach, people with IDD are recognized as experts and partners in their own care, rather than passive recipients of charity and services-as is the case in needs-driven services (Mapp et al., 2019). Notably, the social model of disability has been criticized for denying the individual experiences of disabilities (e.g., pain, compromised quality of life, etc.). However, the human rights perspective acknowledges personal challenges associated with disabilities and requires that they be considered in the context of social justice (Morris, 2001).
Further, this perspective extends beyond the social model's focus on social power and recognizes the importance of cultural and minority identification (e.g., gay pride, deaf community, etc.), such that disability identity and culture is not only acknowledged but celebrated. Similarly, a human rights model acknowledges that people with IDD are a heterogenous group who often have multiple, intersecting identities (e.g., relative to race, gender, age, etc.) that impact their social status and experience of oppression and discrimination. As such, people with IDD not only experience ableism, but also racism, genderism/sexism, ageism, and other forms of oppression that interfere with their right to community inclusion (Degener, 2016).
While social work has been identified as a human rights profession, it has not yet fully realized this assertion (Mapp et al., 2019). As such, social work can promote community inclusion by more fully embracing a human rights-based approach to critically examine and enhance disability supports and services. Echoing the International Federation of Social Workers, in 2015 CSWE charged the profession with advancing human rights, as well as social, economic, and environmental justice. Within the human rights framework, needs are reframed as rights. As such, social workers are charged with helping individuals to have ongoing access to their rights, rather than simply responding to or fulfilling an immediate need (McPherson, 2018). By understanding the barriers and challenges to realizing one's rights through a rights-based lens, social workers are directed toward setting goals that focus on justice and equity and "long-term commitment to social and political change" (McPherson, 2020, p. 61). Hence, social workers advocating for community inclusion not only assist persons with IDD in exercising their rights but must also challenge larger systemic factors that infringe upon these rights (McPherson & Abell, 2020).
Intentionally Aligning with Person-Centered Planning. Undergirded by the personin-environment framework and self-determination, the social work profession focuses on person-centered planning (PCP) as the hallmark of quality care for diverse groups (Washburn & Grossman, 2017). Like social work, the IDD field emphasizes PCP as its guiding philosophy "to reduce social isolation, promote friendships, and increase autonomy, competence, social contribution, and respect" (Holburn et al., 2004, p. 64). PCP emphasizes and supports an individual's vision for a preferred life through meaningful roles and active participation. Through PCP, the individual is respected as the primary decision-maker and their choice and autonomy act as guiding forces in shaping how services and supports are delivered (American Geriatrics Society Expert Panel on Person-Centered Care, 2016). This is an important shift away from hierarchical models of care that see the provider as the expert and primary decision-maker. This shift is integral to supporting the empowerment and self-determination of persons with IDD and ensuring that systems of care do not further oppress and marginalize them.
The common emphasis on PCP between social work and the IDD field has the potential to create new opportunities for increased community inclusion for people with IDD, particularly as PCP has been associated with improved social networks, increased contact with family and friends, and greater involvement in group activities (Claes et al., 2010). At times, however, social work has fallen short with critical elements of PCP (e.g., respect for the personhood of the person being supported; Washburn & Grossman, 2017). Scholars have noted that PCP requires an intentional emphasis on supporting individuals' unique goals for social relationships and community participation (Bogenschutz & Amado, 2016). Consequently, social workers need to purposefully align their practices with PCP to better support inclusion across settings.
Fostering Evidence-Based Practices. Although society has often proclaimed community inclusion for people with IDD, research has suggested a disconnect between intentions and outcomes for inclusion (Scior et al., 2020). Bogenschutz et al. (2015) identified national research goals to advance social inclusion for people with IDD. These goals included understanding contextual factors that influence social inclusion, building capacity for social inclusion, and identifying best practices for social inclusion (Bogenschutz et al., 2015). Notably, both social work and the field of IDD have called for greater emphasis on best practices and EBP (Schalock et al., 2017;Thyer & Myers, 2011). For people with IDD, interventions and practices have often originated in the general population, and as such, they have lacked sensitivity to disability culture and therefore warrant adaptations to be effective (Andrews et al., 2019;Keesler, 2020). Schalock et al. (2017) identified the importance of EBP in IDD services and emphasized a multi-systems framework with implications of various factors (e.g., support staff strategies and opportunities for participation) for individual outcomes. Further, they stressed the need for cultural sensitivity, use of the social-ecological model, team collaboration and consultation, and the ability to work with limited resources. Given these collective considerations, social work is well-situated to embark on the development, evaluation, and advancement of EBP for inclusion.
Using Participatory Action Research. Participatory action research (PAR) can be integral to developing EBP for community inclusion of people with IDD (Powers, 2017). Well within the expertise of social work, PAR is an approach to scientific inquiry that actively engages members of an oppressed group in identifying critical issues and collaborates with them in creating solutions (Tanabe et al., 2018). Social workers can and must learn from the knowledge of persons with IDD to have a more complete understanding of what barriers to inclusion exist and how to overcome them. While engaging persons with IDD as key stakeholders is critical, they have largely been excluded from participating in the very research, policy development, and decision-making that intimately affects their lives (Dinora et al., 2020). According to Inclusion International (2012), What is missing is the voice of people with intellectual disabilities and their families who have lived the experience of exclusion and isolation, who understand the causes and impact of that exclusion and who have a vision for what living and being included in the community should look like. (p. 9) The voices of people with IDD must drive the inclusion movement forward. "Nothing about us without us" has been adopted by disability rights advocates to assert the importance of ensuring that persons with IDD are at the forefront of decisions that affect their lives (Charlton, 1998). Persons without disabilities do not have the experience of living with a disability and therefore do not share the same level of knowledge and insight about the issues affecting persons with IDD (Tanabe et al., 2018). Consequently, the experiences of people with IDD must be valued and they must be leading discussions, decisions, and agendas surrounding services, accessibility, and rights-based issues (Rios et al., 2016).
Over the past two decades, PAR has gained some interest from IDD practitioners and researchers given its collaborative and inclusive nature; however, despite its promise, the approach remains under-utilized (Rosner, 2015). Criticisms of traditional research focused on disability suggest that it is not representative of people with IDD, as it has largely been conducted by those without lived experience of disability, which may inaccurately reflect the experiences of people with IDD and result in further disempowerment and alienation (Rios et al., 2016). In contrast, PAR is empowering, inclusive, collaborative, authentic, and conducive to facilitating positive social change, especially for marginalized groups (Baum et al., 2006). Through this approach, persons with IDD are valued as experts on inclusion by virtue of their lived experience and respected as key contributors and partners in the research process. By focusing on PAR and elevating the perspectives of people with IDD, social work could foster a more accurate representation of the experiences of persons with IDD and more effectively build inclusive communities.

Including Disability in Social Work Education.
Education is a powerful tool in the movement toward community inclusion for people with IDD. Although the disability rights movement aligns with the profession's emphasis on social justice and equity, social work education has fallen short in disability content to adequately prepare students for practice with people with IDD (Bean & Hedgpeth, 2014). This is concerning from a few perspectives: (a) people with IDD constitute a diverse population with intersecting identities and experiences; and (b) social work students become the next generation of social work practitioners, researchers, and advocates. Despite developments in national and international policies related to IDD, social workers have been rarely identified in the context of the IDD field and have largely remained invisible (Bigby & Adkinson, 2010). Unfortunately, few social work students express a desire to work with people with IDD as their targeted client population (John & Schrandt, 2019). In addition, differences among social work students in their attitudes toward people with different types of disabilities suggest a possible disability hierarchy (e.g., preference toward people with physical disabilities over people with IDD), which is counter to equity and social justice in the field (Keesler, 2019).
The experiences of people with IDD are underrepresented in social work curricula, such that neurodiversity and disability are often not considered in the context of diversity. Like people with IDD, people of color and people who are transgender have been marginalized. Although extensive efforts have focused on upholding the dignity and worth of people of color and transgender people, people with IDD continue to be largely excluded from discussion and activism on diversity and systemic oppression (Mackelprang, 2010). Further, when content does specifically address practice competencies with people with IDD, these tend to be based on medical and rehabilitative models of understanding disability that fail to consider societal and environmental factors that create challenges for people with IDD (Meekosha & Dowse, 2007).
It is plausible that increased exposure to disability content in social work programs could ameliorate these concerns. Kim and Sellmaier (2020) suggested that social work programs assess the visibility of disability in their institutional practices, explicit curriculum (e.g., course content and assignments), and implicit curricula (e.g., policies and discourse). By increasing awareness of disability in social work education through expanded disability content, the profession could foster increased interest among burgeoning social workers to enter the disability field and better prepare those who have already decided to do so (John & Schrandt, 2019;Kim & Sellmaier, 2020). Notably, in collaboration with the CSWE, the Disability-Competent Care Curriculum Workgroup (2018) developed a curricular resource guide to support the integration of disability content in social work curricula. This guide provides support for educators in identifying and linking CSWE competencies with disability learning outcomes and educational resources.
Increased Community Action and Advocacy. Although the social work profession has become increasingly focused upon clinical practices, its historic roots are in advocacy and societal change (Mapp et al., 2019). The profession's code of ethics calls social workers to action, "to prevent and eliminate" discrimination based on disability and to "promote conditions that encourage respect for cultural and social diversity…(and) promote policies and practices that demonstrate respect for difference" (NASW, 2021, Standard 6.04). Hence, the profession is charged with meeting the needs of people with IDD and challenging macro barriers, like ableism, that prevent full community inclusion. Mackelprang (2010) noted that, "although NASW actively condemns racism, it is relatively quiet about ableism that places disabled people at risk" (p. 93). It is time for social work to partner with people with IDD to actively challenge ableist practices and structures. Scior et al. (2020) noted that social workers could actualize these responsibilities toward people with IDD by developing resources and educating the public about IDD, by addressing and seeking an end to disability stigma and discrimination, and by advocating for laws and international standards that safeguard and protect people from victimization and exclusion because of their disability. Notably, however, social workers are also called to act within the scope of their training and expertise. Further, advocacy is often influenced by interests and passion. Collectively, expertise, interests, and passion, are often influenced by education. And, as previously noted, disability content is often limited within social work curricula. So, while social workers can and should engage in increased action and advocacy for people with IDD, their abilities to do so may be compromised by their formative academic experiences until curricular amendments are made.

Conclusion
Persons with IDD have the right to be fully included and treated as equitable members of their communities. Their quality of life is contingent upon the quality of their supports, services, and interpersonal relationships; participation in educational and recreational activities; their ability to exercise choice and independence; having access to individualized supports (versus a "one-size fits all" approach); and, living and socializing within their communities (Schalock et al., 2018). Equitable communities are realized only when all their members are recognized, valued, and included. For people with IDD, this requires the removal of all barriers that prevent them from fully exercising their right to community inclusion.
If social work espouses to be a human rights profession, then social workers must step forward and dismantle the injustices that people with IDD continue to experience. As social workers, we can no longer ignore the importance of inclusion and its positive impact on well-being. We must listen to the perspectives of those with lived experience. We must engage in creating, evaluating, and fostering effective strategies to increase community inclusion for people with IDD. We must partner with people with IDD and work alongside them, for disability rights are human rights. Because simply being in a community is not enough.