Independent Living Philosophy
What does independent living mean?
Definition: The right of people with disabilities to control and direct their own lives and to participate actively in society. To control and direct one’s life means making cultural and lifestyle choices among options that minimize reliance on others in decision-making and in the performance of everyday activities, limited only in the same ways that people without disabilities are limited. It means exercising the greatest possible degree of choice about where you live, with whom to live, how to live, and how to use time. This includes taking risks and having the right to succeed or fail. It also includes taking responsibility for one’s decisions and actions.
To participate actively in society means having opportunities to fulfill a range of social roles. These include working, owning a home, raising a family, engaging in leisure and recreational activities, and participating to the extent one chooses in all aspects of community life. This includes asserting one’s rights and fulfilling one’s responsibilities as a citizen.
Independent Living Centers or Centers for Independent Living
Definition: Centers are consumer-controlled, community-based, cross-disability, non-residential, private non-profit agencies that are designed and operated within local communities by individuals with disabilities and provide an array of independent living services. Their primary mission is to empower people with all types of disabilities to live more independently and have control over their lives. They constitute the primary advocacy and service delivery system for the Independent Living movement.
Consumer Controlled means that the organization’s governing board includes a majority of people with severe disabilities, the Center staff and decision-makers includes a majority of members who have disabilities and that consumers served by the Center control service delivery systems and decisions.
Community development services are provided by CILs to increase local options available to people with disabilities. Services include community needs assessment, inter-agency coordination, systems advocacy for needed community change (especially the development of needed services resources), technical assistance, public information and education, outreach, and community initiatives.
Direct Consumer services are provided by CILs to empower people with disabilities to increase their self-determination, achieve personal goals, and become more effective members of their families and communities. Included are the core services of information and referral, peer consultation, individual advocacy, and skills training, as well as other services determined to be locally appropriate.
Cross-disability means that the CILs advocate on behalf of, and offer their services to, all persons with severe disabilities regardless of diagnostic categories.
The primary service delivery system means that the CILs are the primary agents that represent and promote the IL movement and its philosophy.
CILs have evolved several characteristics that separate them from more traditional service delivery programs. The Center for Resource Management (1988) identifies these unique characteristics as:
- consumer control at the policy level of a center’s operations – Board of Directors comprised of a majority of persons with disabilities
- majority representation of persons with disabilities at the administrative and staff level
- emphasis on services to a cross-disability consumer population
- emphasis on consumer control of service objectives and on peer role modeling and
- provision of such core services as information and referral, peer counseling, independent living skills training, individual advocacy, and community advocacy.
Today, over 300 programs nationwide offer a range of services to facilitate consumer goal achievement. All CILs offer the core services of advocacy, peer support, information and referral, and independent living skills training. Other services provided by CILs, as determined by local needs, include housing, attendant care, transportation, equipment, social/recreational activities and a wide range of other services. CILs do not have a single goal or measure of success. Rather, they respond to a wide range of community-based needs and goals ranging from peer counseling to accessible transportation through individual and direct services, referral to other resources and activities targeted towards community change (physical and attitudinal).
Centers for Independent Living Core Services
Centers are required to provide five core services under Title VII Part C of the Rehabilitation Act of 1973, as amended in 1992. These services include information & referral, advocacy, peer counseling or support, and independent living skills training. They were described as follows by The Center for Resource Management in collaboration with the National Council on Independent Living in the publication, The Independent Living Services Model (Center for Resource Management and National Council, 1988):
- Information and Referral
Access to information and referral services are essential for people with disabilities. In addition to varied types of direct services, individuals need information on options, resources, and the issues that influence their abilities to achieve independent lives. Referral assistance is also essential since achieving independence most often requires the involvement of a variety of agencies and community organizations.
Information and referral services are also provided to other service providers and the community at large. This assistance is instrumental in increasing public awareness of disability issues and knowledge of the service options and resources available to people with disabilities from the center and the community.
Many persons in the independent living movement have described the advocacy services provided by CILs as the “cornerstone” of all Centers for Independent Living. It is the service that truly separates centers from other community-based programs for persons with disabilities.
Independent living centers provide advocacy support to individual consumers, as well as group advocacy. The central themes that run through advocacy assistance are consumer control and self-reliance. Reflecting such basic tenets as the right to control one’s own life and to make choices, this core service area involves a process that empowers consumers to act on their own behalf and resist accepted norms of dependency.
- Peer Counseling
Emphasizing the direct involvement of persons with disabilities as role models in the service process, peer counseling has also been described as a cornerstone of independent living services to consumers. A basic premise of peer counseling is that, by virtue of their disability-related experience, people with disabilities are uniquely qualified to assist their own peers. Through this core service area, a peer counselor, or peer advocate who has achieved the desired level of independence and community integration, shares knowledge and experiences with a consumer. The process facilitates consumer awareness of independent living options and how to approach certain situations and seeks to motivate confidence in overcoming external barriers that inhibit independence.
- Independent Living Skills Training
Skills development is an important feature of achieving or enhancing an independent life. The national evaluation study determined that almost all Part C funded independent living centers offer some type of skills training, but variation exists in who conducts the training, range of skill areas covered, where training occurs, and the extent to which the training is formalized.
Some centers view skill developments as a key element of other core services, such as peer counseling and advocacy, rather than as a discrete service component. In centers where skills training is a separate service, it may be provided on a one-to-one basis, through groups to address the common needs of consumers or both. There is a trend for centers that offer structured types of skills training to develop formal written curricula or training sequences, especially if they offer training to groups.
Because the independent living philosophy endorses consumer choice, independent living centers work to transition individuals from institutional care to community-based living. These transitions involve a wide range of issues and challenges such as employment/benefit income, assessable housing, transportation and the establishment of meaningful community activity of the consumer’s choosing.
Transition as a core service is also intended to assist school-age individuals to adapt to adult life after secondary school age is passed. These transitions involve many of the same challenges, but also include advancement to university or vocational education.
Examples of skill areas offered are:
- Managing personal assistance services
- Carrying out personal care and daily living activities
- Using message relay services
- Managing personal finances
Other than the core services, there are many other services that CILs can provide in response to needs as defined by consumers. A few examples include:
- Attendant Care
- Adaptive Technology Services
- Independent Living Aids
- Mobility Training
- Transportation Assistance