Go back to: Inclusion: People with Disabilities
September, 1993
Art lived in an institution for 41 years. He is severely physically disabled. He now lives in his own apartment with a roomate and has friends in the neighborhood. Last year he received a community award.
Emily was sent to special education when she was seven because she learned much slower than the other children and caused trouble. She was in a class with other children who had the same difficulties. She had no friends. At age 13, she is now attending regular classes with help from a special education teacher and her homeroom support friends. Her mother says that she has been invited to her first birthday party.
We are in the midst of a major social revolution that is quietly happening around all of us--the movement towards inclusive communities. Inclusive communities include and support persons with disabilities. They welcome and celebrate diversity among members and provide support via neighbors, friends, and community organizations in partnership with professionals. However, inclusive communities are not just a new approach to services for people with disabilities and others who are at risk; rather, inclusive communities are a recognition of our mutual need to reconnect and reestablish a society of supportive relationships. For the first time in human history, we are moving from a need to separate those with differences and compete against others; we are learning in virtually all segments of our world that cooperation in learning, work, planning, international relationships, and other areas benefits us all. As we truly become a global village, we are realizing that we must learn to value and cherish differences. People with disabilities, members of minority groups, and other individuals at risk and professionals in human services have a critical role to play in this important social revolution. We can work together to help create better places for us all to live. If we can learn to cherish, support, value, and empower those with the most marked differences, we will simultaneously create better lives for all persons in our communities. As advocates with and for persons with disabilities, we must simultaneously focus on building better lives for specific individuals and provide assistance in restructuring our communities, schools, and service agencies, to provide more effective support for all its members.
Inclusive communities are the vision and framework towards which we must work. However, we must address many issues in this process. This article provides a discussion of the key components of inclusive communities, shifting paradigms and roles in human services, and an analysis of past, present, and future trends that support and challenge the movement towards inclusive communities. Finally, we discuss strategies for change that may be useful.
Inclusive Communities
What is community? Community may be thought of as the supportive interactions of a group of people in an area small enough to be meaningful to the individual. Gardner (1989) has identified these elements of community:
-wholeness incorporating diversity
-a shared culture-good internal communication
-caring, trust, and teamwork
-group maintenance and government-participation and the sharing of leadership
tasks
-development of young people-links with the outside world
Community may additionally be thought of from two perspectives--individual and group. On the one hand, community only really occurs in the context of the lives of real people. For all of us, including persons with disabilities, community occurs when we have a network of relationships with others--friends, family, lover. We are supported by others, share, have fun. We enrich the lives of each other. Therefore, building a community must ultimately always mean building supportive networks around specific individuals.
However, towns, neighborhoods, community organizations--the components of "communities"--develop structures and cultural norms that can support, or mitigate against, the forming of relationships of persons with differences. Communities that are not supportive impact negatively on the quality of life of us all. Creating supportive, caring places to live, therefore, is much more than a new "disability service program". We are talking about creating communities for us all. From this perspective, we are concerned about the degree to which communities and their sub-components operate so that all people are welcome and supported. Such communities develop processes where individuals with special needs may receive special supports and assistance to enable them to participate in activities with other individuals. A variety of supports, environmental accomodations, group support, and skill building for the individual may occur.
For all individuals to be supported in communities, these two perspectives must work in tandem. Efforts must be made to develop communities and organizations within them that support all people together. Simulteneously, very specific and concrete efforts may be needed from a partnership of friends, family, and professionals to provide assistance to an individual. These two perspectives provide a framework and operational process for facilitating inclusive community in specific and practical ways.
Including and Supporting People with Disabilities in Communities
In inclusive communities, we move from focussing on services provided exclusively by agencies to support for involvement in typical community activities based on the needs and choices of the individual. Disability service agencies work in partnership with community services, support networks (friends, family, peers), and the person with a disability. The primary role is to help connect and support the individual in school, home, community, and work. How does this look? Figure 1 below provides a graphic illustration of this relationship. Additionally, some examples may be helpful:
-a child with cerebral palsy attends a day care center with special support and assistance from the occupational therapist and early childhood teacher from the Intermediate School District. These individuals provide technical assistance and support to the day care center, adaptive equipment, and information regarding the needs of the student.
-a "circle of friends" includes a child with autism in the second grade providing help in school and friends; this is part of a series of circles for all children in this class.
-an individual with a severe physical disability goes to a University. Assistance is provided by the Counseling Center to faculty in adapting the learning process; they also help facilitate support and adaptations in student life activities. An enabling technology specialist has assisted the person in obtaining computer-based adaptive equipment that allows the individual to effectively complete courses and obtain a job as a financial analyst.
From Services to Community Support:
the Shifting Approaches to Human Services
What is the role of service providers for persons with disabilities in inclusive communities? Is there one? Clearly, yes. Inclusive communities, however, imply some very important role differences. These include the following:
-providing support, technical assistance to generic service agencies
in the community
-support and assistance to friends, family, and community members
-direct support and services to the person
For example, a special education teacher may work in several regular education classrooms providing assistance and support to the teacher, facilitating cooperative education, and encouraging peer tutoring and support. Additionally, the teacher may provide direct assistance to the student with a disability. A job coach and caseworker may also work together with the person, family, and friends to establish a network of support on the job and in the community. In these approaches, service providers serve as support personnel. They may work as much with other professionals, friends, family, and others as with the individual directly.
As we focus on providing community support, the locus of services also changes. To date, we spend most of our attention and resources on helping the person with a disability to change--to develop skills of all sorts, to improve health and physical well-being. These remain very important. However, when we exclusively emphasize skill development, we often do not allow an individual to participate in community activities until they have the "requisite" skills. We artifically limit involvement of the person with a disability in the community. Instead, we now focus on a combination of skill development, support, environmental adaptation, and partial participation. Community participation and the development of relationships occurs now.
Inclusive Communities and Individuals:a Working Model
To facilitate inclusive communities becoming a reality, a conceptual framework or working model is useful. This view emphasizes the relationship of services and supports for the individual and the development of an array of options regarding services and natural and human service supports in organizations and in the community as a whole. Components of the model include: (1) functional components of individual development and support; (2) life domains (eg. work, home living, etc.); and (3) personnel and organizations (education and human services) and natural community supports (friends, family, contacts).
Phases of Human Development: Child-Adult On one axis, we must consider needs of individuals at various times in their lives. Young children, youth, adults, and older adults both have similar and different needs. Attention to both commonalities and differences is important in addressing needs of individuals in inclusive communities.
Outcomes in Life Domains: Work, School, Home, Community, Leisure, Relationships Life is an interactive process between life domains. Work is central in that income aids us in obtaining housing, engaging in recreation and leisure activities, and participating in the communities. Our relationships are based on contacts and involvement with individuals in each of these life areas. Services and supports in inclusive communities must focus holistically on the total individual (Brolin, 1990; Halpern, 1985; Bellamy and Wilcox, 1987; Wehman, Renzaglia, and Bates, 1985; Falvey, 1990). For the individual, we may plan for desired futures; we will evaluate our activities and their efficacy to determine the types of outcomes that have resulted for specific individuals and groups of individuals.
In each of these life domains, across the life span, a number of functional life tasks are important in our development as individuals and the development of a particular lifestyle. Each of these must be adequately addressed. Functional components include:
-self-determination: the capacity of the individual to utilize skills to make choices and direct the course of their own lives
-person-centered planning: development of understanding of oneself (and of the individual by others who are interested in helping the person); engaging in planning for desirable future goals--related to work, home living, relationships, community participation, and recreation/leisure.
-skill development: development of skills to engage in important life activities--work, relationships, home living, etc.
-supports: access to a range of supports needed to reach goals and participate effectively in desired life activities. This may include: financial and personal assistance from natural community supports (friends, family, co-workers, etc.) and human service personnel (counselor, job coach, case manager)
-relationships: developing a supportive continuum (acquaintance, friend, lover, etc.) of relationships with individuals
-accommodations: using a range of strategies to adapt and modify environments to accommodate for individual characteristics. This may involve changing the physical or social environment, changing methods of accomplishing tasks, using a variety of aids, changing tasks themselves.
-participation: engaging in valued activities in the community. Such participation is based upon a complex interaction of plans, skills, supports, relationships, and accommodations.
As a brief example, an individual may engage in planning, assisted by family and educators. The person may choose a particular vocational direction, receive training via a vocational education program. The person, however, may need special assistance in locating a job, modifying particular aspects of the job, and obtaining training and support on the job.
A range of individuals and organizations may play various roles in developing support systems in an organization and in assisting a specific individual or family. Such individuals and organizations may be described in three broad categories:
-natural supports: friends, family, co-workers
-educational services: special education; general education; vocational education
-community services: special services for persons with disabilities and other special needs (rehabilitation, mental health, JTPA, etc.); generic community services (parks and recreation, etc.)
All components of this model work together in an interactive fashion and all are important. For example, an individual will make choices and engage in planning to meet certain goals. This may occur formally and systematically or haphazardly or a combination of these. To meet goals the individual may develop skills, obtain needed supports, develop relationships, and obtain necessary accomodations. All of these contribute to participation in meaningful community activities. For individuals with more severe challenges--physical or mental disability, behavioral problems, poverty, dysfunctional family, etc.--various levels of support and accomodation may be necessary. To aid an individual in meeting any of these functional components, a partnership of human services have been developed. At best, these operate in a partnership with the individual, family, and relationship network of the individual. Further, specialized human services that focus on specific populations--poor, drug abusers, people with disabilities, older persons--function most effectively when services are provided directly to the individual and to generic community services (churches, parks and recreation, etc.) to assist these services in including special populations.
While the model focusses on the individual in community, it may also be viewed from the perspective of the community as a whole and specific groups and organizations within the community. Thus, the community may question how it provides the functional components for all of its members, the degree to which all are welcome and supported in various parts of the community--work, home, community activities, recreation/leisure, and how partnerships occur, or do not occur, between individuals, personal relationship networks, and human service providers.
Social Choices
We should understand where we are in our journey of social change--where we have come from and where we are going. Bradley and Knoll (1989) have described shifting paradigms in services to persons with disabilities over the last 20 years. We have moved from a medical/custodial model of services in large, congregate care facilities to deinstitutionalization based upon a developmental model and heavy reliance upon a team of specially trained professionals. Individuals have moved into community group homes and other "community-based programs". Michigan has been recognized as a national leader in this process. The challenge now is to move from a focus on deinsitutionalization to community membership, inclusion, and full participation with support.
Our country is in the midst of important challenges in moving into this next phase of community membership for persons with disabilities. A variety of forces in our state are posing opposite pressures--some towards creating inclusive communities, some threatening regression towards the previous phases of segregated service delivery systems. On the one hand, an increasing number of national, state, and local leaders in schools, agencies, and advocacy organizations are helping to articulate and support movement towards inclusive communities. For example, superintendents and other administrators in public schools are providing an important influence in supporting and expanding the availability of "inclusive education". Family-based disability advocacy groups continue to provide important influences. Persons with disabilities themselves are increasingly becoming an articulate force for change. Partnerships of individuals throughout the state may be seen where new, creative approaches are being used to include and support persons with disabilities in communities.
On the other hand, important forces that mitigate against inclusive community are apparent. Most apparent of these revolves around funding for community programs. State funding for developmental disabilities has shown dramatic shifts from institutions to community programs. However, these figures hide the facts that funding of services for individuals who have never been institutionalized has been reduced reduced substantially when inflation is taken into account. This impacts particularly on persons with moderate to severe disabilities leaving the school system. The result is a growing crisis in which individuals and families needing services are being placed on waiting lists that last for years. A resolution to this growing crisis must occur as human tragedies occur that make the political costs to legislators and other policymakers unpalatable.
The direction that such a resolution will take is difficult to determine. We see actions in various parts of the country to return to institutional models to deal with the problem. For example, a recent proposal in Kent County, Michigan, was recently seriously entertained to create a country living program for a number of persons with disabilities--thus proposing to replicate the model by which institutions were created in the 19th century. Our country is at an important point in determining its future related to persons with disabilities. We have the vision, leadership and technology to move towards seeing inclusive communities become a reality. We also have the potential to return to segregated services and lives for persons with disabilities. It is the challenge of a statewide coalition to sharpen our images of inclusive communities and increase our understanding and technology for services and systems change necessary to strengthen inclusive communities for all.
Strategies for Change
How do we facilitate movement to inclusive communities that support and value persons with disabilities? Several strategies appear to be important. Most important of all, we want to create models that illustrate how inclusion can happen. This is occurring throughout the country in segments--inclusive education, supported employment, supported living. A few communities are beginning to experiment with how to put it all together--creating inclusive communities where children with disabilities begin and continue through their lives where they are included, supported, and valued for their contributions. Universities, service organizations, and others, are working to provide technical assistance, training, and evaluation that will assist this process.
As we create community models, important funding and policy changes become evident. Important questions regarding use of service funds and resources and mechanisms for payment come into question. Shifting roles for personnel create a need for training and technical assistance and funding to support such activities.
Perhaps most importantly, we need leaders in communities who have vision and experience of persons with disabilities in community life and skills to facilitate change. Some of these leaders will be persons with disabilities themselves. Education of professionals is very important in this process--including disability specialists, generic human service providers (recreation, social services, physicians, etc.) and community leaders (politicians, public administrators, religions leaders). Education should provide both information and experiences of persons with disabilities in community life and should demonstrate the manner in which disciplines and organizations in communities can work together as a cooperative team to provide supportive, inclusive places that value diversity.
Conclusion
The creation of inclusive communities is an exciting challenge for us all for the coming years. Visions of a new way of relating create potential for enhanced lives for all people. We have both the opportunity and the responsibility to create such a better world for us all.
REFERENCES
Gardner, J. (1989, Fall) Building community. Kettering Review, 73-81.
Go back to: Inclusion: People with Disabilities