Preamble
This is as much an acid test, as it is a desire to present folks with possibly useful information. The acid test is to determine how I can send off something with Substack, as this is, in case its not obvious, the first time I’m doing so, but also to answer questions about what a CIL is, which I’ve mentioned on Face Book. The material here was compiled by me and was part of introductory info given to Living Independently For Everyone’s board (LIFE Inc.), presented when they joined said board. Yes, its kind of dull. What follows will present what a CIL is, the philosophy behind the movement, its overall history, and a link to how to find what CIL covers your county, if you live in the United States.
What is a CIL?
Centers for Independent Living (CIL), are consumer-controlled, community-based, cross-disability, non-residential private non-profit agencies that are designed and operated within a local community by individuals with disabilities and provide an array of Independent Living (IL) services. At a minimum, Centers are required to provide the following five IL core services:
• Information and referral;
• Independent living skills training;
• Peer counseling;
• Individual and systems advocacy;
• Transition services that include: services that facilitate transition from nursing homes and other institutions back into the community aid those at risk of entering institutions facilitate transition of youth to postsecondary life (The former part of LIFE’s nursing home transition, and the latter part of Youth for LIFE).
Centers also may provide, among other services: psychological counseling, assistance in securing housing or shelter, personal assistance services, transportation referral and assistance, physical therapy, mobility training, rehabilitation technology, recreation, and other services necessary to improve the ability of individuals with significant disabilities to function independently in the family or community and/or to continue in employment.
What is Independent Living?
One of the central facets of this organization, the Independent-Living philosophy, can be considered a movement, a philosophy, or specific programs. In the context of this work, and in the Administration of Community Living (ACL), independent living refers to a series of programs designed to promote and produce certain outcomes. These programs are supported through funding authorized by the Rehabilitation Act of 1973, as amended (The Act). Title VII, chapter 1 of the Act states the current purpose of the program is to “promote a philosophy of independent living including a philosophy of consumer control, peer support, self-help, self-determination, equal access, and individual and system advocacy, in order to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities; as well as the integration and full inclusion of individuals with disabilities into the mainstream of American society” (Library of Congress Review of Policies, 2018, 108).
While a more thorough overview of the history of the Independent Living movement is presented later in this document, it is important to note that the Independent Living movement first gained prominence in the 1970's with the passage of the Rehabilitation Act of 1973. "The Act" established federal rules and funding requirements for the development and operation of Independent Living services programs by Centers for Independent Living (CILs) located throughout the United States. The purpose of these programs is to "work to support community living and independence for people with disabilities across the nation based on the belief that all people can live with dignity, make their own choices, and participate fully in society. These programs provide tools, resources, and supports for integrating people with disabilities fully into their communities to promote equal opportunities, self-determination, and respect“(Library of Congress Catalog, ACL overview, retrieved Jan 2017). There are nearly 500 CILs nationwide, with ten located within the State of Georgia. Key provisions of the Rehabilitation Act also include responsibilities of: the Designated State Entity (DSE), provisions for the Statewide Independent Living Council (SILC), requirements for State Plans for Independent Living (SPIL), and Center for Independent Living standards and assurances. To receive funding, states must each develop and submit a State Plan for Independent Living (SPIL), which is a three-year plan for providing Independent Living services within the state. The Statewide Independent Living Council (SILC) is an independent entity responsible for developing, monitoring, reviewing and evaluating the implementation of the SPIL. The Designated State Entity has an ex-officio seat on the Council. The Designated State Entity (DSE) is the agency that on behalf of the State, receives, accounts for and disburses via grants, State funding and federal funding received under Subpart B of the Act. The DSE is identified in the SPIL. For Georgia, as of this writing, the DSE is the Georgia Vocational Rehabilitation Agency (GVRA).
As the DSE's designee the GVRA ensures both federal and State funds are expended properly by: requiring reporting from the CILs; by conducting regular onsite Compliance Reviews and desk reviews of the CILs; and by providing technical assistance for and ongoing monitoring of contracts entered into by CILs to obtain State and federal grant funding. Initially, the Rehabilitation Act of 1973 designated the United States Department of Education (DOE), as the federal agency assigned to carry out the requirements of the Act. The US DOE established the Rehabilitation Services Administration (RSA), to oversee CIL funding and compliance with the Act. In July 2014, the Workforce Innovation and Opportunity Act (WIOA), was signed into law, transferring administration of federal Independent Living programs from the RSA to the US Department of Health and Human Services, Administration for Community Living (ACL).
General History of the Independent Living Movement
The history of independent living is closely tied to the civil rights struggles of the 1950s and 1960s among African Americans. Basic issues – disgraceful treatment based on bigotry and erroneous stereotypes in housing, education, transportation, and employment — and the strategies and tactics are very similar. This history and its driving philosophy also have much in common with other political and social movements of the country in the late 1960s and early 1970s. There were at least five movements that influenced the disability rights movement.
• Social Movements — The first social movement was deinstitutionalization, an attempt to move people, primarily those with developmental disabilities, out of institutions and back into their home communities. This movement was led by providers and parents of people with developmental disabilities and was based on the principle of “normalization” developed by Wolf Wolfensberger, a sociologist from Canada. His theory was that people with developmental disabilities should live in the most “normal” setting possible if they were expected to behave “normally.” Other changes occurred in nursing homes where young people with many types of disabilities were warehoused for lack of “better” alternatives (Wolfensberger, 1972).
• The Civil Rights Movement — although people with disabilities were not included as a protected class under the Civil Rights Act, it was a reality that people could achieve rights, at least in law, as a class. Watching the courage of Rosa Parks as she
defiantly rode in the front of a public bus, people with disabilities realized the immediate challenge of even getting on the bus.
• The self-help movement — began in the 1950s with the founding of Alcoholics Anonymous, came into its own in the 1970s. Many self-help books were published and support groups flourished. Self-help and peer support are recognized as key points in the independent living philosophy. According to this tenet, people with similar disabilities are believed to be more likely to assist and to understand each other than individuals who do not share experiences with similar disability.
• Demedicalization — a movement that began to look at more holistic approaches to healthcare. There was a move toward “demystification” of the medical community. Thus, another cornerstone of independent living philosophy became the shift away from the authoritarian medical model to a paradigm of individual empowerment and responsibility for defining and meeting one’s own needs.
• Consumerism — the last movement to be described here, was one in which consumers began to question product reliability and price. Ralph Nader was the most outspoken advocate for this movement, and his staff and followers came to be known as “Nader’s Raiders.” Perhaps most fundamental to the independent living philosophy today is the idea of control by consumers of goods and services over the choices and options available to them.
The independent living paradigm, developed by Gerben DeJong in the late 1970s (DeJong, 1979), proposed a shift from the medical model to the independent
living model. As with the movements described above, this theory located problems or “deficiencies” in the society, not the individual. People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. Issues such as social and attitudinal barriers were the real problems facing people with disabilities. The answers were to be found in changing and “fixing” society, not people with disabilities. Most important, decisions must be made by the individual, not by the medical or rehabilitation professional. Using these principles, people began to view themselves as powerful and self-directed as opposed to passive victims, objects of charity, cripples, or not whole. Disability began to be seen as a natural, not uncommon, experience in life, not a tragedy.
The first CIL
Ed Roberts (1935-1999), is considered the father of the Centers for Independent Living movement. Ed Roberts was an international leader and educator in the independent living and disability rights movements. He fought throughout his life to enable
all persons with disabilities to fully participate in society. Ed was a true pioneer: he was the first student with significant disabilities to attend
UC Berkeley. He was a founder of UC’s Physically Disabled Students Program, which became the model for Berkeley’s Center for Independent Living (CIL) and
over 400 other independent living centers across the country. He was one of the early directors of CIL. He was the first California State Director of Rehabilitation with a disability; he was awarded a MacArthur fellowship; and he was co-founder and President of the World Institute on Disability.
ADAPT
Wade Blank began his lifelong struggle in civil rights activism with Dr. Martin Luther King, Jr. to Selma, Alabama. It was during this period that he learned about the stark oppression, which occurred against people considered to be outside the “mainstream” of our “civilized” society. By 1971, Wade was working in a nursing facility, Heritage House, trying to improve the quality of life of some of the younger residents. These efforts, including taking some of
the residents to a Grateful Dead concert, ultimately failed. Institutional services and living arrangements were at odds with the pursuit of personal liberties and life with dignity. In 1974, Wade founded the Atlantis Community, a model for community-based, consumer-controlled, independent living. The Atlantis Community provided personal assistance services primarily under the control of the consumer within a community setting. The first consumers of the Atlantis Community were some of the young residents “freed” from Heritage House by Wade (after he had been fired). Initially, Wade provided personal assistance services to nine people by himself for no pay so that these individuals could integrate into society and live lives of liberty and dignity. In 1978, Wade and Atlantis realized that access to public transportation was a necessity if people with disabilities were to live independently in the community. This was the year that American Disabled for Accessible Public Transit (ADAPT) was founded. On July 5-6, 1978, Wade and nineteen disabled activists
held a public transit bus “hostage” on the corner of Broadway and Colfax in Denver Colorado. ADAPT eventually mushroomed into the nation’s first grassroots disability rights activist organization.
In the spring of 1990, the Secretary of Transportation, Sam Skinner, finally issued regulations mandating lifts on buses. These regulations implemented a law passed in 1970-the Urban Mass Transit Act-which required lifts on new buses. The transit industry had successfully blocked implementation of this part of the law for twenty years, until ADAPT changed their minds and the minds of the nation. In 1990, after passage of the Americans With Disabilities Act (ADA), ADAPT shifted its vision toward a national system of community-based personal assistance services and the end of the apartheid-type system of segregating people with disabilities by imprisoning them in institutions against their will. The acronym ADAPT became “American Disabled for Attendant Programs Today.” The fight for a national policy of attendant services and the end of institutionalization continues to this day. Wade Blank died on February 15, 1993, while unsuccessfully attempting to rescue his son from drowning in the ocean. Wade and Ed Roberts live on in many hearts and in the continuing struggle for the rights of people with disabilities.
https://www.ilru.org/projects/cil-net/cil-center-and-association-directory