Whether or not we have a disability, we will never fully achieve our goals until we establish a culture that focuses the full force of science and democracy on the systematic empowerment of every person to live to his or her full potential.
––Justin Dart
ON A ROLL RADIO
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Overview
Independent living and community integration concepts and outcomes are key foci of NIDRR research. Central to independent living is the recognition that each individual has a right to independence that comes from exercising control over his or her life, based on an ability and opportunity to make choices in everyday activities. These activities may include participating in community life; fulfilling social roles, such as marriage, parenthood, employment, and citizenship; sustaining self-determination; and minimizing physical or psychological dependence on others.
While independent living emphasizes independence, whatever the setting, by its very nature it is a concept that also promotes participation, especially in community settings. For this reason, NIDRR will integrate its research agenda in independent living and community integration to encourage interdisciplinary thinking about the interrelationship, to achieve more successful outcomes for people with disabilities, and to foster the development of innovative methods to achieve these outcomes and to measure the achievements.
Independent Living and Community Integration Concepts
One framework for formulating this research agenda recognizes that independent living has been used to describe a philosophy, a movement, and a service program. At a philosophical level, independent living addresses the question of equity in the right to participate in society and share in the opportunities, risks, and rewards available to all citizens. It provides a belief system to a generation of people with disabilities. The new paradigm of disability is an outgrowth of this philosophical concept of equity, bringing social and environmental elements to the meaning of disability.
At another level, independent living has been integral to the development of the disability rights movement. This movement primarily has used a civil rights approach to demand equal access for people with disabilities, leading most notably to the passage of the Americans with Disabilities Act (ADA) in 1990. These movement activities have had a significant impact on disability policy and will continue to be examined as part of NIDRR’s disability studies funding.
At the service system level, more than 300 centers for independent living receive funding under the Rehabilitation Act and these centers foster and enhance independent living for people with disabilities. In addition, both federal and state funds support community-based residences for members of the developmentally-disabled community as well as members of other disability groups. In the past, NIDRR has supported research to develop management strategies for these centers.
Community integration also has conceptual, movement, and service delivery components. As a concept, it incorporates ideas of both place and participation, in that community integration means not only that a person is physically located in a community as opposed to an institutional setting, but that an individual participates in community activities. Issues of consumer direction and control also are integral to concepts of community integration.
As a movement, community integration had a primary goal of the deinstitutionalization of people with mental retardation or mental illness and has succeeded in moving many individuals from large institutional settings into the community. The deinstitutionalization movement arose from a confluence of consumer advocacy, judicial decisions, research efforts, and public policy reforms. During the last 30 years, deinstitutionalization has decreased the number of individuals with mental retardation and mental illness who live in state institutions by more than 75 percent. In addition, advocacy organizations for people with physical disabilities have implemented the movement aspects of community integration in their demand for community-based supports and services.
At the service system level, community integration has resulted in development or expansion of a range of services and programs designed to support individuals with disabilities to live in their communities. For instance, individuals who need assistance with activities of daily living (ADLs), such as bathing, dressing, or ambulation, often need personal assistance services (PAS) to live independently in the community. In the traditional service delivery model, long-term care agencies supply PAS by providing home health care aides to individuals. These aides tend to work under the direction of professional health care providers and perform a restricted set of tasks in time frames determined by the agency. A support model, however, shifts the locus of control to the consumer, who is responsible for recruiting, hiring, training, supervising, and firing assistants.
Expanding the Theoretical Framework
NIDRR will continue expanding the knowledge base about the meaning and application of independent living and community integration concepts. This theoretical approach will address issues of inclusion, bases for participation, and ways in which people identify their communities. This effort will be interdisciplinary in nature and will draw from disciplines such as anthropology, sociology, social psychology, history, disability studies, engineering, and medicine.
Each of these disciplines has offered various interpretations of the issues at the core of the concept of community. Anthropologists have defined community to emphasize a shared culture or a way of organizing and giving meaning to life events. Sociologists have discussed community as an organized group dealing with common issues in relation to other organized groups within an environment. Historians have defined community as a web of relationships creating a social order within a political and spatial context that often focuses on issues of who is legitimately a community member.
In the world of disability and rehabilitation, community also has had multiple meanings. In medical rehabilitation, return to community usually refers to life outside a medical facility, typically the community in which an individual resided before an injury or illness. In the disability world, community sometimes means the community of those living with a disability, those who share common experiences.
To go from theory to practice involves identifying the necessary factors for achieving independence within a community setting. In recent years, there has been a shift from a traditional service delivery model to a model that emphasizes consumer direction and support. As a consequence, individuals with disabilities of all types have shifted from a dependence on agency service providers to an active use of community-based supports. In the support model, consumer choice, customization of needed services, and consumer empowerment are of increased importance compared to the traditional model in which service agencies emphasized professional competence, accountability, and quality control by service providers, and the safety of clients. Also, in the support model, people with disabilities are perceived as self-directed, able, and mainstreamed as opposed to being seen as helpless and objects of care.
Implications for research focus on the investigation of major physical and societal or environmental factors, including physical accessibility, societal attitudes and policies, and the availability of services, supports, and assistive technology that facilitate full participation.
The emphasis on social and policy barriers inherent in the new disability paradigm provides an incentive to examine the extent to which the ADA has contributed to independent living and community integration. The ADA applies a civil rights model in addressing societal policies and practices that create barriers to full participation in society. If, however, the ADA is to have a truly transformative impact on American society, there must be a vision of a nondiscriminatory society against which progress can be measured. At present, there are no real benchmarks by which to assess the ADA’s impact. Evaluations tend to be in terms of “cases” handled, complaints resolved, lawsuits won, physical barriers removed, or volumes of information assembled, rather than the extent to which the ADA has resulted in greater participation in society by people with disabilities.
The growing realization of the importance of environmental barriers in disability focuses concern on environmental changes that have the potential to impede or facilitate independent living and community integration. Perhaps most striking are the continuous developments in telecommunications and information technology. Accessible computers and Internet infrastructure as well as universal or specialized communication devices afford access to information and interactions among people with disabilities, their families, advocates, service providers, employers, and others. Careful planning, based on research, will be a requirement for ensuring that new technologies increase participation rather than result in isolation for people with disabilities.
Directions of Future Research on Independent Living and Community Integration
The purposes of NIDRR’s research in the area of independent living and community integration are to facilitate the participation of people with disabilities in society by:
- identifying and evaluating factors or domains of community integration and independent living, especially those aspects that lead to full participation in society;
- identifying and evaluating community support models that promote community integration and independent living outcomes for individuals with all types of disabilities and from a full range of cultural backgrounds;
- providing empirical evidence of the impact of consumer control on outcomes associated with community integration and independent living;
- assessing the impact of environmental factors on the individual achievement of community integration and independent living;
- developing and disseminating training on independent living and community integration concepts and methods for consumers, families, service providers, and advocates; and
- developing and evaluating management tools to enable centers for independent living and other community programs to support independent living and community integration.
Future Research Priorities in Independent Living and Community Integration
Research will analyze the implications of shifting from services to supports for the individual and develop an in-depth understanding of the role of supports in facilitating community integration and independent living.
Research on Community Integration/Independent Living Concepts. Both personal experience and certain academic disciplines provide guidance for understanding community integration and independent living. Development of an integrated conceptual framework will facilitate rigorous research on how to use community integration and independent living concepts to improve the lives of people with disabilities.
Additionally, research must find ways to measure these outcomes in order to evaluate services provided to people with disabilities.
Specific research priorities include:
- reviewing relevant scholarship and creating a theoretical framework for the study of community integration and independent living that incorporate the real world experiences of people with disabilities, and include knowledge gained from disability studies;
- developing measures that build upon the conceptual framework and can be applied to the evaluation of rehabilitation interventions intended to increase independence and integration; and
- analyzing cultural perspectives as facilitators or obstacles to independent living and community integration.
Research on Implementation of Community Integration/Independent Living Concepts. The independent living and community integration movements have contributed conceptual standards for evaluating disability and medical rehabilitation services and programs. Further research is needed on how to apply these standards in different real-world settings. Currently, many programs and services do not reflect these concepts and, consequently, often provide services that do not incorporate consumer direction or allow consumer choice.
Specific research priorities include:
- identification and assessment of models of service delivery that incorporate concepts of independent living and community integration and reflect an understanding of the importance of environmental barriers; and
- development and dissemination of training materials on independent living and community integration concepts for consumers, families, service providers, and advocates.
Research on Measures of Independence and Community Integration. To evaluate how programs and services contribute to the outcomes of independence and community integration, researchers, policy-makers, and consumers must have adequate measures of these outcomes. As discussed elsewhere in this plan, NIDRR is placing special emphasis on development of measures of the interrelationship between the individual and the environment. Concepts of independent living and community integration are integral to that process.
Specific research priorities include:
- development of measures of independence and community integration that are consumer-sensitive and that measure the impact of the environment and accommodation on these outcomes; and
- evaluation of strategies to promote independence, inclusion, and participation.
Research on Physical Inclusion. Housing, transportation, communication, and architectural barriers limit the physical inclusion of people with disabilities. Lack of funding also affects access to these necessary community supports, and funding constantly changes due to policy decisions at the federal and state levels.
Specific research priorities on physical inclusion include:
- identification and evaluation of models that facilitate physical inclusion, including the development and evaluation of supported housing and transportation models that are consistent with consumer choice; and
- investigation of the impact of managed care on access to services and equipment that provide support for physical inclusion.
Research on the Impact of the ADA. The impact that the ADA has had or will have on participation in society currently is unknown. It is important to identify the obstacles to optimal achievement of the goals of the ADA.
Specific research priorities include:
- an evaluation of the impact of the ADA on community participation of people with disabilities and on the achievement of independent living and community integration outcomes;
- an examination of questions of accessible infrastructure, employment patterns, civic participation, recreational activities, societal attitudes, and policies to determine what post-ADA policy initiatives may be required to attain full participation by people with disabilities; and
- an analysis of the extent to which the ADA has affected other public policy initiatives.
Research on the Impact of Technological Innovation. While the potential benefits of technological innovations are often assumed, there also are potential issues about accessibility, equity, and application of communications technology and how these issues affect independent living and community integration.
Specific research priorities include:
- an assessment of the impact of applications of telecom-munications innovations on independent living and community integration outcomes;
- an identification of barriers to participation in the community, including those resulting from inequitable distribution of technology or reduction of interpersonal contact; and
- an exploration of potential innovative applications of telecommunications and information technologies to expand opportunities for informed choice, independence, communication, and participation.
Research on Increasing Personal Development and Adaptation. NIDRR previously has funded personal skills development training to assist people with disabilities in living in the community. This training covers skills related to behavior management, communication, and productive work. In the area of behavior management for people with mental retardation and mental illness, strategies have focused on minimizing challenging behaviors.
Specific research priorities include:
- identification of strategies that promote the development of self-advocacy skills, including social and communication tools, to assist people with disabilities in living in community settings;
- analysis of the influences of environmental factors in developing positive behavioral support models;
- development of cost-effective techniques to foster the capacity of providers, educators, and families to prevent or respond to challenging behavior;
- assessment of the potential role of technology in promoting personal development and adaptation in community settings; and
- development of strategies and tools to improve consumer choice and decision-making about assistive technology and to assess its performance.
Research on Personal Assistance Services. It is important to test hypotheses about the role of personal assistance services (PAS) in promoting community integration, return to work, health maintenance, and the impact of PAS on the use of health care and institutionalization dollars. The relative value of different PAS systems for disabled individuals of varying ages, disability types, ethnic groups, and personal independence goals is unknown. Although research has demonstrated the impact of consumer-directed PAS models on consumer satisfaction, the relationship of satisfaction to quality of life and other outcomes measures needs further explication.
Specific research priorities include:
- evaluation of the quality of life and cost-effectiveness outcomes of consumer-directed services;
- analysis of the impact of PAS on participation in employment; and
- evaluation of the impact of assistive technology on the need for and use of PAS.
Research on Social Roles. Public policy research is needed to examine how rules and regulations of public programs affect achievement of desired roles by people with disabilities. Marriage, parenthood, and employment are among the social roles that are often discouraged by legislation, regulations, policies, and practices.
Specific research priorities include:
- investigation and documentation of the ways in which federal, state, and local legislation, regulations, policies, and practices impact on social role performance of people with disabilities; and
- identification and evaluation of tools to assist people with disabilities in fulfilling their social roles.
Research on Social Integration and Self-Determination. The abilities to form mutually rewarding and non-exploitative friendships, to recognize and express personal preferences, to evaluate options and make decisions, to advocate for oneself, and to adapt to changes in circumstances are attributes that contribute significantly to independent living and community integration.
Specific research priorities include:
- identification and evaluation of service delivery models that incorporate individual choice and consumer control into strategies for achieving social integration and self-determination;
- development of measures to evaluate independent living and community integration in terms of inclusion, social integration, and self-determination; and
- assessment of the prevalence of abuse and violence in community settings, and development of strategies to minimize their occurrences.
Research on Management Tools for Centers for Independent Living and Community-Based Residential Programs. NIDRR previously has funded research on effective management strategies for centers for independent living, as well as research on community residential living for individuals with mental retardation and long-term mental illness. Continued research in these areas will evaluate the effectiveness of current systems and address the challenges to these programs in their expanding roles.
Specific research priorities include:
- development of strategies for centers for independent living to succeed in their roles with state rehabilitation agencies and other agencies and groups concerned with independent living;
- development and evaluation of strategies for centers for independent living and community-based residential programs to design and adapt programs that address the changing nature of the disability population;
- development and evaluation of strategies for centers for independent living to respond to increased emphasis on ADA issues, such as accommodation, accessibility, and universal design; and
- investigation of applications of new information technologies in the management of centers for independent living and community-based residential programs.
Research to facilitate community integration and independent living will focus on strategies to make communities, social systems, public policies, and the built environment more accessible to people with disabilities and more supportive of their independence and participation.
In the new paradigm scenario, the emphasis will be on supports rather than services, the managers of support systems increasingly will be people with disabilities themselves, and services originally designed for application in institutions will be adapted for use in the general community.
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