Community integration, while diversely defined, is a term encompassing the full participation of all people in community life. It has specifically referred to the integration of people with disabilities into US society [1] [2] from the local to the national level, and for decades was a defining agenda in countries such as Great Britain. [3] Throughout recent decades, community integration programs have been increasingly effective in improving healthcare access for people with disabilities. They have been valued for providing a "voice for the voiceless" [4]
In the United States, the Consortium of Citizens for Disabilities [5] advocates for a national public policy that "ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all parts of society". Other countries (such as Canada) with different roots often spoke of inclusion: the unifying, global agenda in "disability and community life". [6] [7]
Theorists have differentiated types and levels of integration in special education as physical, functional, social, community, and organizational. [8] In disability circles, community integration meant opportunities for participation in schools, careers, homes, relationships, leisure, and a variety of interests and lifestyles. [9] Bengt Nirje and the late Wolf Wolfensberger of the US are internationally known for their concept of normalization and social role valorization, [10] [11] with a particular emphasis on physical and social integration. Anders Gustavsson (c. 1990) of Sweden has indicated that physical integration best describes the common use of the term "integration", with social integration the struggle for "equality and quality in life." [12]
The intent of community integration was the participation of people with disabilities in regular environments, the antithesis of exclusionary practices (such as the minority-group model). [13] [14] As the field moved toward community support, theories related to community living began to require applicability beyond a minority-group model [15] with a new emphasis on self-determination. [16] As described by Racino, these theories include ecological theory, community-support theories, systems theory, feminist theories, family theories, sociocultural theories, critical theories in education, psychosocial theories, the generic human-concept theory, and universal theories. [15]
Taylor, in his analysis of community systems in the US, proposed the principle of the non-restrictive environment as a counterpoint to the federal government's least-restrictive-environment principle. [17] [18] In 2014, the governing principle in the US is that of the most integrated setting based upon the Supreme Court Olmstead Decision. [19]
Before the Olmstead decision, the Supreme Court addressed the community integration issues multiple times in the case, Halderman v. Pennhurst State School and Hospital, a class action filed in Pennsylvania by attorney David Ferleger. [20] Although the Olmstead decision explicitly did not reach the constitutional issues decided in the Pennhurst and other cases, limitations in Olmstead have been critiqued and it has been argued that there is a constitutional right to community services. [21]
The analysis of large-scale systems change in community integration has involved challenges by local public agencies, key elements of these strategies (e.g., enabling leadership, putting people first, values and vision, learning for quality), and its implications for national policy. [22] Disability-agency, state-level disability-system, community, and societal change are essential (but insufficient) elements of the process and outcomes of community integration. [23]
Community integration also has strong community roots which place it in community practice fields from community psychology, to sociologists studying community, to inclusive education in local school systems, competitive businesses (with rehabilitation), rural independent living, urban sociology, local parks, and recreation programs, community development and housing, neighbourhoods, and communities, among others.
Educational integration has a long history, described as "more comprehensive than academic mainstreaming". [24] Community integration in this context refers to opportunities "to learn practical social and community living skills in a wide variety of community settings". [25] : 3 Based in part on the civil-rights movement [26] as represented by Brown v. Board of Education, school integration was based on the right to free and appropriate education. [27] [28]
Educational integration (often equated with inclusion) remains controversial in the US (although it is supported by law) due, in part, to special-education systems. [29] [30] [31] School integration also involves children with more significant disabilities, such as those with technology-assistance needs. [32] Progress has been made in education at the post-secondary level (in almost all population groups) due, in part, to disability-services departments at colleges. [33] [34] Instead of educational integration, the goal is for continued school reform through inclusion (education) and for education with legally-mandated accommodations.
In the US disability field, a major shift has occurred from the group and facility-based models to homes with support services, [35] emphasizing a change from "home-like" housing to community homes, neighbourhoods, and relationships. [36] [37] The most-recent initiatives were in homeownership, [38] an important form of community integration that also involves a feeling of ownership. [39] Housing integration builds on a long history of support for good quality, affordable housing which often includes analyses of social exclusion which may concentrate on US-protected classes. [40]
Housing integration is of great importance, in part, because of the history of residential segregation (usually by race and class) in the US. [41] [42] Residential segregation due to inequality and disparity continues to be studied in ethnic, social, and economic frameworks, including the process of desegregation, gentrification, and hyper segregation. [43] [44] [45] In addition, redlining, as a bridge issue across lower and middle classes, affects housing and neighbourhood integration from as early as the 1970s with gerrymandering districts for community development funds more common in the 2000s. [46] A discussion of residential segregation in the US and Europe and a "critique of the ideal of integration" can be found in Inclusion and Democracy. [47]
In the US, mixed-income and scattered-site housing was reported in a case study of a housing association supporting people with disabilities in Madison, Wisconsin (the Madison Mutual Housing Association and Cooperative). [48] In Canada, the Prairie Housing Cooperative (as reported by David Wetherow) integrates persons with disabilities into the community via housing. [49] An early review on nonprofit housing in the US and Canada, with increasing governmental funds in the US today, indicates that mixed-income housing [50] was used primarily in "troubled neighbourhoods" with efforts to seek higher-income tenants to move into those neighbourhoods as opposed to raising the entire group's living standards. [51] In 2013, the emphasis is on inclusive and sustainable housing, [52] while other groups support equitable and sustainable housing in the US (Policy Link). The status of housing and disability in America was reported by the National Council on Disability in the US, [53] and compared to Harvard University's report on the nation's housing. [54] [55]
Being in the community has meant being part of local activities and events in towns, cities, and suburbs. [56] Recreational integration is one facet of inclusion and community access. [57] School-and-recreation integration was promoted in the US, Canada, and Australia. [58] [59] On the local level, concerns have included acceptance and friendships, support services, site accessibility, group size, and "truly integrated" (in contrast to side-by-side) activities; in Great Britain, for example, community opportunities were sought for people to belong, contribute and make friends. [60] Recreational funding has also often been tied to facilities, and community integration involves staffing changes in environments such as the YMCA. [61]
Recreational inclusion may be a camp, [62] a neighbourhood centre, [63] a girls' softball league, [64] school sports or technology clubs, [65] a community choir, [66] or a public-speaking course [67] as integrated social participation. [68] [69] Auto-related examples include an amusement-park car track; car shows, bike nights and car cruise-ins, and model-car racing. [70]
Employment integration was advocated during the 1970s for women, people with disabilities, and racial groups, who were seen as discriminated against in employment (Racino for the Urban League of Onondaga County, Inc., 1978); for example, occupations and professions were constructed based upon gender: women's professions (nurses, teachers, secretaries) and men's professions (scientists, managers, administrators, police, firemen, and construction). [71] Progress has been made at the leadership level with the first African American president (Barack Obama), disability leadership in the United States Department of Education (Judith Heumann), and the rise of prominent women in the State Department (Madeleine Albright and Hillary Clinton).
For those with severe disabilities, employment-integration initiatives were often framed as supported employment, which allowed jobs at regular businesses and employment sites. [72] [73] [74] [75] [76] Similar initiatives in the mental health field were often called transitional employment, and other forms of integration included competitive placements in businesses and industry, targeted positions, and even affirmative businesses in the hearts of business districts. A major success was the passage of the Americans with Disabilities Act of 1990, amended in 2008 (following the Rehabilitation Act of 1973, amended in 1978), which protected men and women with disabilities in obtaining jobs, careers, and positions with necessary workplace accommodations. [77] A key service for employment integration is often considered to be personal assistance services, [78] or in other fields a job coach [79] before more "natural" models of supervision and support. [80]
In this context employment integration has been conceptualized, including social aspects of promotion, discriminatory hiring and termination practices, performance standards, job-sharing and modification, educational attainment, internships and volunteer experiences, workplace relationships, team-building, supervisory roles, workers' compensation, accommodations, and supports (Urban League of Onondaga County, 1978). Competitive employment integration in the US workplace is expected by law, and categorical services have tended to be developed segregated bases (e.g., sheltered facilities to supported employment). Employment integration is a worldwide issue, modified by approaches to multicultural groups (e.g. the growing Latino population in the US), the changing economy (e.g. from manufacturing to service), and increasing unemployment.
Community integration has been most criticized for its inattention to gender, ethnic, cultural, racial, class, and economic factors [81] [82] ("double discrimination", pp. 60–61). At the university level multiculturalism, including disability, was proposed as the solution to these complex issues. [83] Community integration, in practice, involves diverse approaches and models (age, team, agency, area, and gender integration or segregation) and has been integral to de-institutionalization and community development for over two decades. [84] [85] Community integration is a policy, concept, and practice to address systemic stigma and discrimination related to disability. [13] [86] [87] It competes with other policy models (such as multiculturalism) and changes its practices over time. [88]
In the sub-field of brain injury, community integration included areas ranging from supported employment to daily living skills, family interventions (versus support) and memory training, school reintegration, and transition to post-secondary education. [89] [90] [91] [92] Community integration was being diversely defined by researchers, including those in fields such as brain injury, [93] [94] sensory impairments (e.g., hearing, visual), [95] developmental, [96] and physical disabilities. [97] News and professional-journal articles will often read, "integration into the community" (from institutions and facilities), integrated care (health services integration), or "community reintegration" (after hospital care) [98] worldwide.
In the field of mental health Paul Carling promoted community integration in the 1980s and 1990s in opposition to the predominant medical model, [99] [100] while psychiatric rehabilitation is also linked to the medical, often allied health, professions. Carling's approach to community integration in mental health was congruent with intellectual disabilities, particularly in areas of community living (e.g., supportive living in intellectual disabilities, supported housing in mental health, and housing and support). [101] In 2008, Disability and Society, a popular disability policy journal discussed community reintegration for people with psychiatric disabilities and their relationship to centres for independent living. [102]
Comprehensive medical systems were proposed to support the family in community integration, including new roles for specialized personnel from neuropsychologists to physiatrists. [103] In the field of traumatic brain injury, community integration was framed by both the social and medical models of disability to transition people from hospitals and rehabilitation centres. [104] [105] Today, the Brain Injury Association of America recommends the educational needs of children with traumatic brain injuries and the health care required. [106]
In 1985, the US government-funded a national community-integration project identifying best community practices for people with the "most severe disabilities". [107] [108] Technical assistance was funded through the Rehabilitation Research and Training Center on Community Integration (of the National Institute on Disability Rehabilitation Research and Training Center, US Department of Education) to all states. [109] [110] The Rehabilitation Research and Training Center on Community Integration (Syracuse University, headed by Steve Taylor) also subcontracted with the University of Illinois (David Braddock), the University of Minnesota Institute on Community Integration (K. Charlie Lakin) [111] The federal departments subsequently offered contracts to evaluate the status of these new community services in the US [112] and others.
The principles of community integration through the national flagship centres (the Rehabilitation Research and Training Centre on Family and Community Living, [113] facilitated by Lakin and J.A. Racino of Syracuse University) were:
The 1988 Leadership Institute on Community Integration (From Being in the Community to Being Part of the Community, Steve J. Taylor, director; Julie Ann Racino, deputy director and B. Shoultz, information coordinator), held in Washington, D.C., was sponsored by the Research and Training Center on Community Integration in cooperation with the National Institute on Disability and Rehabilitation Research, the Office of Special Education and Rehabilitative Services, US Department of Education, Beach Center on Families and Disability (University of Kansas), California Research Institute (University of Connecticut), Rehabilitation Research and Training Center (Virginia Commonwealth University), Research and Training Center Consortium on Aging and Developmental Disabilities (an eight-university consortium coordinated by the University of Cincinnati), Research and Training Center on Community Living (University of Minnesota) and the University-Affiliated Program in Developmental Disabilities (University of Illinois at Chicago). [114] Workgroups were facilitated in community living, families, school, and employment with papers prepared, respectively, by K. Charlie Lakin, Ann P. Turnbull and H. Rud Turnbull, Douglas Biklen, and Paul Wehman.
By the late 2000s, the Centers were renamed to Community Participation, one aspect of community integration, or Employment, or other priority areas, such as Health, with many of the above centres still federally funded through the NIDRR program (National Institute on Rehabilitation Research and Rehabilitation), US Department of Education and new academic centres at universities such as Temple University in Pennsylvania.
In particular, community integration in intellectual, disabilities, and developmental disabilities means families for all children. [115] [116] For adults, it means 'ordinary' or 'regular' homes with support services. [117] [118] [119] In addition, community integration means recreation, employment, transportation, and education with the personal assistance and support(s) necessary to participate fully in the community. [120] [121] [122]
However, community support (e.g., consumer-directed services) as part of community-agency change and deinstitutionalization, [123] [124] self-determination, [125] [126] community participation, [127] individual planning, [128] [129] social relationships [130] and personal-assistance services [131] [132] became the leading direction in US community integration. Community integration has also been described as comparative to normalization, a widely known value-based system of human services (See, Wolfensberger, Nirje & Bank-Mikkelsen).
Community integration has been tied to quality assurance in the community and improved quality of life. [133] [134] [135] It has involved evaluations and studies over at least two decades in areas ranging from service costs to personnel studies, service typologies, best practices and innovations, and community and integration studies. [136] [137] [138] [139] [140] [141] [142] Internationally, quality of life has been explored in Finland, Australia, the US, Germany, Hungary, Denmark, and Canada. [143]
Researchers in the US (Julie Ann Racino, Syracuse University) and Great Britain (David Towell, King's Fund College) collaborated on community integration, including a 1990 series of international seminars on community integration in the US held at the University of Manchester (Hester Adrian Research Center), Manchester Polytechnic and Manchester Health Authority, the King's Fund College (with Lyn Rucker), Campaign for the Mentally Handicapped (London), the University of Wales at Bangor (Center for Social Policy Research), and the University of Wales (Mental Handicap Research Unit). Internationally, research began on the "first integrated generation" in countries such as Sweden [144] and integration were confirmed as a legal principle in the US. [145]
Community services support, integration and inclusion are changing in countries such as Czechoslovakia (now the Czech Republic and Slovakia), [146] Australia, New Zealand, Japan, Israel, Austria, Great Britain, Iceland, and Sweden. [147] Since the 1990s the European Union has formed, populations in the Middle East have been emancipated, community self-advocacy has developed in South America and Africa and financial ownership of US debt has been undertaken (in part) by China. [148] The United Nations [149] offers guidance and leadership through its Convention on the Rights of Persons with Disabilities (particularly Article 19, which addresses independent living and community inclusion). A book based on these principles is "Public Administration and Disability: Community Services Administration in the US" (Racino, 2014) [150] which links to the diverse nation-states and rationales for continuing educational, employment, and housing segregation Segregation in Northern Ireland.
Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for equal opportunities, self-determination, and self-respect. In the context of eldercare, independent living is seen as a step in the continuum of care, with assisted living being the next step.
Supportive housing is a combination of housing and services intended as a cost-effective way to help people live more stable, productive lives, and is an active "community services and funding" stream across the United States. It was developed by different professional academics and US governmental departments that supported housing. Supportive housing is widely believed to work well for those who face the most complex challenges—individuals and families confronted with homelessness and who also have very low incomes and/or serious, persistent issues that may include substance use disorders, mental health, HIV/AIDS, chronic illness, diverse disabilities or other serious challenges to stable housing.
The Rehabilitation Act of 1973 is a United States federal law, codified at 29 U.S.C. § 701 et seq. The principal sponsor of the bill was Rep. John Brademas (D-IN-3). The Rehabilitation Act of 1973 replaces preexisting laws to extend and revise the authorization of grants to States for vocational rehabilitation services, with special emphasis on services to those with the most severe disabilities, to expand special Federal responsibilities and research and training programs with respect to individuals with disabilities, to establish special responsibilities in the Secretary of Health, Education, and Welfare for coordination of all programs with respect to individuals with disabilities within the Department of Health, Education, and Welfare, and for other purposes. It created the Rehabilitation Services Administration.
Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.
Person-centred planning (PCP) is a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalised support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people. PCP is accepted as evidence based practice in many countries throughout the world.
Inclusion in education refers to all students being able to access and gain equal opportunities to education and learning. It arose in the context of special education with an individualized education program or 504 plan, and is built on the notion that it is more effective for students with special needs to have the said mixed experience for them to be more successful in social interactions leading to further success in life. The philosophy behind the implementation of the inclusion model does not prioritize, but still provides for the utilization of special classrooms and special schools for the education of students with disabilities. Inclusive education models are brought into force by educational administrators with the intention of moving away from seclusion models of special education to the fullest extent practical, the idea being that it is to the social benefit of general education students and special education students alike, with the more able students serving as peer models and those less able serving as motivation for general education students to learn empathy.
"The normalization principle means making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society." Normalization is a rigorous theory of human services that can be applied to disability services. Normalization theory arose in the early 1970s, towards the end of the institutionalisation period in the US; it is one of the strongest and long lasting integration theories for people with severe disabilities.
Deinstitutionalisation is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.
Supported living or supportive living refers to a range of services and community living arrangements (CLAs) designed with individuals with disabilities and their families to support disabled citizens to attain or retain their independence or interdependence in their local communities. Supported living is recorded in the history of the NASDDDS, celebrating its 50th Anniversary. Community Supported Living Arrangements (CSLA) was a landmark federal multi-state demonstration to illustrate the federal role in community living in the US. Supported living is considered a core service or program of community living programs funded through federal-state-local partnerships.
Wolf Peregrin Joachim Wolfensberger, Ph.D. (1934–2011) was a German-American academic who influenced disability policy and practice through his development of North American Normalization and social role valorization (SRV). SRV extended the work of his colleague Bengt Nirje in Europe on the normalization of people with disabilities. He later extended his approach in a radical anti-deathmaking direction: he spoke about the Nazi death camps and their targeting of disabled people, and contemporary practices which contribute to deathmaking.
A mental health professional is a health care practitioner or social and human services provider who offers services for the purpose of improving an individual's mental health or to treat mental disorders. This broad category was developed as a name for community personnel who worked in the new community mental health agencies begun in the 1970s to assist individuals moving from state hospitals, to prevent admissions, and to provide support in homes, jobs, education, and community. These individuals were the forefront brigade to develop the community programs, which today may be referred to by names such as supported housing, psychiatric rehabilitation, supported or transitional employment, sheltered workshops, supported education, daily living skills, affirmative industries, dual diagnosis treatment, individual and family psychoeducation, adult day care, foster care, family services and mental health counseling.
The Burton Blatt Institute (BBI), established at Syracuse University in 2005, is an organization that aims to advance civic, economic, and social participation of persons with disabilities in a global society. Peter Blanck, a University Professor at Syracuse University, is the chairman of BBI.
A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.
Psychiatric rehabilitation, also known as psych social rehabilitation, and sometimes simplified to psych rehab by providers, is the process of restoration of community functioning and well-being of an individual diagnosed in mental health or emotional disorder and who may be considered to have a psychiatric disability.
Supported employment refers to service provisions wherein people with disabilities, including intellectual disabilities, mental health, and traumatic brain injury, among others, are assisted with obtaining and maintaining employment. Supported employment is considered to be one form of employment in which wages are expected, together with benefits from an employer in a competitive workplace, though some versions refer to disability agency paid employment. Companies such as Skilcraft in the United States are an example of "supported employment" which is defined in law for state and federal reimbursements.
John O'Brien is a leading thinker who has written widely in the field of disability. He is a pioneer and lifelong advocate of Person Centred Planning. To this end, he was co-developer of two models for person centred planning, namely the McGill Action Planning System (MAPS) and Planning Alternative Tomorrows with Hope (PATH). His values based approach emphasises learning with each person about the direction their lives could take, challenging and overcoming practices, structures and values that lead to segregation and underestimation rather than inclusion, and an approach to change in people's lives based on 'imagining better'. His thinking is based on Social Role Valorisation and the Social model of disability. He is an Associate Editor of Mental Retardation, and on the Advisory Boards of the Georgia Advocacy Office and Georgia PASS. With Herbert Lovett, O'Brien co-wrote “Finding A Way Toward Everyday Lives,” a paper cited by others in the disabilities field as a significant reference point in the early development of person-centered planning.
Family support is the support of families with a member with a disability, which may include a child, an adult, or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families, and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services are currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability groups, administrating agencies, and even, regulatory and legislative intent.
Gunnar Dybwad (1909–2001) was an American professor and advocate for the rights of people with disabilities, particularly developmental disabilities. He is best known for his support for the social model of disability, reframing disability accommodations as a matter of civil rights, not medical treatment. The American Association on Intellectual and Developmental Disabilities gives out the Dybwad Humanitarian Award annually in his honor.
As of 2017, approximately 1.4 million Americans live in a nursing home, two-thirds of whom rely on Medicaid to pay for their care. Residential nursing facilities receive Medicaid federal funding and approvals through a state health department. These facilities may be overseen by various types of state agency.
The Connecticut Department of Developmental Services (DDS) is a state agency of Connecticut providing services to individuals with developmental disabilities and their families. Its headquarters are in Hartford. According to its official Twitter description, "CT DDS serves more than 20,000 individuals [with] intellectual disability and their families, including 4,000 infants and toddlers in the Birth to Three System."