The independent living movement was born in the mid to late 1960s along with several other civil rights groups, such as African Americans and women, who became activists for equality in American society. Before this time, many people with disabilities lived either with their parents or sadly, in nursing homes or other institutions, because they did not have access to community-based services to facilitate their independence. These limited options were eventually expanded, and the idea that one could have a severe disability and still live independently in the community was promoted by Ed Roberts, also known as the “father of independent living.” Roberts’ story is a heralded one in the brief history of independent living. As a child, he developed polio at age 14, leaving him a quadriplegic, reliant on a large piece of equipment called an “iron lung” to breathe. He lived in a nursing home for many years. Roberts fought many battles with vocational rehabilitation and the University of California, Berkeley, to gain their support in his quest for higher education (Levy, 1988). Upon acceptance to UC Berkeley, Roberts needed a place to live on campus. He was able to secure part of a university hospital unit and gain the assistance of others to get him up in the morning, ready for classes, and put him to bed again in the evening. The need for these and other services by many people with severe disabilities eventually led to the development of the first Center for Independent Living (CIL) in Berkeley around 1974. The mission of the CIL was not just to provide services to people with disabilities, but also to stress the importance of civil rights to ensure their full participation in the community like nondisabled peers.
In the early 1980s, the U.S. Rehabilitation Services Administration initiated a grant competition to establish funding for 10 CILs. These nonprofit organizations were to serve as community disability resource centers to provide independence-promoting services based on a peer support model and raise awareness of disability issues in the community. As of 2005, this consumer-directed network of resource centers has expanded to include 390 CILs, each with its own board of directors. These centers sponsor more than 300 branches and satellite offices in communities across the nation (Enders, n.d.).
Philosophy
What makes CILs unique from other nonprofit human or medical service organizations? The composition of CILs differs as funding regulations require that over 51% of staff and governing board members must be people with disabilities. In contrast to other disability-specific organizations such as the Association for Retarded Citizens (ARC) or the National Federation of the Blind (NFB), CILs serve people across all disabilities. CILs refer to their constituency as “consumers.” In contrast, vocational rehabilitation -agencies use the term “client.” The term “consumer” was selected to emphasize the importance of choice for people with disabilities in deciding what services best fit their unique needs as individuals, in contrast to a “one size fits all” service model. DeJong (1979) contrasts the paradigms of the medical model and the independent living model of service provision. For a more detailed comparison, see Table 1. The IL model stresses that consumers are experts on their needs, rather than being viewed as having a problem that needs to be fixed or rehabilitated. It also emphasizes that any problem typically resides in the environment, and that when modified can allow consumers to more fully participate. Thus, rehabilitating a person without giving consideration to how the environment could accommodate the person’s functional limitations would be short-sighted. The latter approach demedicalizes the disability and focuses on environmental change to accommodate the person’s needs. It underscores the importance of the Americans with Disabilities Act (ADA), which prohibits discriminatory programs, practices, and policies against people with disabilities.
Table 1 Comparison of the Rehabilitation and Independent Living Paradigms
Independent Living Core Services
Federally funded CILs are required to deliver four core services. These include: information and referral, advocacy, independent living skills training, and peer counseling. Currently, there is consideration of a fifth core service—assisting people with disabilities living in institutions to relocate to community settings. These core services are supplemented by other services such as housing assistance, transportation, and advocacy, which is considered the most important service to facilitate independent living.
The Future Of Independent Living
Currently, CILs are fighting for restoration of parts of the ADA that have been weakened by the federal courts. Centers are also mobilizing for passage of Medicaid Community-Based Attendant Services and Supports Act of 2003 (MiCASSA) (S 971 and HR 2032) to move people with disabilities living in institutions to community-based settings.
References:
- DeJong, (1979). Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 60, 435–466.
- Enders, A. (n.d.). Where are the U.S. centers for independent living? Retrieved from http://rtc.ruralinstitute.umt.edu/CIL/ html
- Levy, (1988). A people’s history of independent living.
- Lawrence: Research and Training Center on Independent Living at the University of