What is Independent Living?
Most Americans take for granted opportunities they have -- regarding living arrangements, employment situations, means of transportation, social and recreational activities, and other aspects of everyday life. For many Americans with disabilities, however, barriers in their communities take away or severely limit their choices. These barriers may be obvious, such as lack of ramped entrances for people who use wheelchairs, lack of interpreters or captioning for people with hearing impairments, lack of Braille or taped copies of printed material for people who have visual impairments. Other barriers -- frequently less obvious -- can be even more limiting to efforts on the part of people with disabilities to live independently, and they result from people's misunderstandings and prejudices about disability. These barriers result in low expectations about things people with disabilities can achieve. So, people with disabilities not only have to deal with the effects of their disabling conditions, but they also have to deal with both kinds of barriers. Otherwise, they are likely to be limited to a life of dependency and low personal satisfaction. This need not occur. Millions of people all over America who experience disabilities have established lives of independence. They fulfill all kinds of roles in their communities, from employers and employees to marriage partners to parents to students to athletes to politicians to taxpayers -- an unlimited list. In most cases, the barriers they face haven't been removed, but these individuals have been successful in overcoming, or at least dealing with them.
A Definition of Independent Living
What is independent living? Essentially, it is living just like everyone else -- having opportunities to make decisions that affect one's life, able to pursue activities of one's own choosing -- limited only in the same ways that one's non-disabled neighbors are limited. Independent living should not only be defined in terms of living on one's own, being employed in a job fitting one's capabilities and interests, or having an active social life. These are only a few aspects of living independently. Independent living has to do with self-determination. It is having the right and the opportunity to pursue a course of action. And, it is having the freedom to fail -- and to learn from one's failures, just as non-disabled people do.
There are, of course, individuals who have certain mental impairments which may affect their abilities to make complicated decisions or pursue complex activities. For these individuals, independent living means having every opportunity to be as self-sufficient as possible.
Independent living isn't easy, and it can be risky. Millions of people with disabilities rate it higher than a life of dependency and narrow opportunities and unfulfilled expectations. Self-determination is having the right and the opportunity to pursue any course of action. It is being free to fail and to learn from those failures, in the same way as people without disabilities.
Independent Living Centers
Fortunately, people with disabilities don't have to do it all on their own. Independent Living Centers are a kind of service organization which is designed specifically to assist people with disabilities in achieving and maintaining independent lifestyles. These organizations, called independent living centers, are extraordinary: they are run by people with disabilities who themselves have been successful in establishing independent lives. These people have both training and the personal experience to know exactly what is needed to live independently and, they have a deep commitment to assisting other disabled people in becoming more independent.
Services of Independent Living Centers
Centers offer a wide variety of services. Four are essential to efforts of people with disabilities to live independently:
A. Information and Referral
Centers maintain comprehensive information files on availability in their communities of accessible housing, transportation, employment opportunities, rosters of persons available to serve as personal care attendants, interpreters for hearing impaired people, or readers for visually impaired people, and many other services.
B. Independent Living Skills Training
Centers provide training courses to help people with disabilities gain skills that will enable them to live more independently; courses may include using various public transportation systems, managing a personal budget, dealing with insensitive and discriminatory behavior by members of the general public, and many other subjects.
C. Peer Counseling
Centers offer a service in which a person with a disability can work with other persons who have disabilities can work with other persons who have disabilities and who are living independently in the community. The objective is to explore options and to solve problems that sometimes occur for people with disabilities, for example, making adjustments to a newly acquired disability, experiencing changes in living arrangements, or learning to use community services more effectively.
Centers provide two kinds of advocacy:
1. Consumer advocacy, which involves center staff working with persons with disabilities to obtain necessary support services from other agencies in the community.
2. Community advocacy, which involves center staff, board members, and volunteers initiating activities to make changes in the community that make it easier for all persons with disabilities to live more independently. 3. Other Services Centers also offer a number of other services, generally depending on specific needs of their consumers and lack of availability elsewhere in the community. Among the most frequently provided services are community education and other public information services, equipment repair, recreational activities, and home modifications.
How Independent Living Centers Differ from Other Service Organizations
There are many different types of organizations which serve people with disabilities -- state vocational rehabilitation agencies, group homes, rehabilitation hospitals, sheltered workshops, nursing homes, senior centers, home health care agencies, and so forth. These organizations provide valuable services and are important links in the network of services that help people with disabilities maintain independent lifestyles. What makes independent living centers very different from these other organizations is that centers have substantial involvement of people with disabilities making policy decisions and delivering services. Why this emphasis on control by people with disabilities? The basic idea behind the independent living is that the ones who know best what services people with disabilities need in order to live independently are disabled people themselves.
The Independent Living Movement
In the late 1960s and the early 1970s, this idea led people with disabilities from around the country to take active roles on local, state, and national levels in shaping decisions on issues affecting their lives. A major part of these activities involved formation of community-based groups of people with different types of disabilities who worked together to identify barriers and gaps in service delivery. To address barriers, action plans were developed to educate the community and to influence policymakers at all levels to change regulations and to introduce barrier-removing legislation. To address gaps in services, a new method of service delivery was conceived -- one which has people with disabilities determining kinds of services essential to living independently, has people with disabilities directing the deliver of these services, and has people with disabilities actually providing these services. The earliest center was formed in 1972 in Berkeley, California soon followed that same year by centers in Boston, MA and Houston, TX. In 1978, following effective advocacy by people with disabilities and their supporters all over the country, federal legislation was passed that provided funding to establish independent living centers (Title VII of the Rehabilitation Act). Today, there are centers in virtually every State and U.S. territory.
The Role of People with Disabilities in Centers
These centers can be easily distinguished from other service agencies by the extent of involvement of people with disabilities. Independent living centers have a majority of people with disabilities on their governing boards, and they hire qualified people with disabilities to fill management and service delivery positions.
Disability Groups Served by Centers
Centers typically serve a wide variety of disability groups, including people with mobility impairments -- which may be caused by spinal cord injury, amputation, neuromuscular disease, Cerebral Palsy, and so forth -- as well as people who have visual impairments, hearing impairments, mental retardation, mental illness, traumatic brain injury, and many other disability groups. The extent to which a center serves a given disability group will vary widely from center to center, dependent very much on availability and quality of services from other community service organizations, the financial resources of a center, and extent to which representatives of that disability group have chosen to be involved in the center. People running independent living centers believe very strongly that prior to initiating services to a disability group, efforts should be made to recruit representatives of that group to serve in board, staff, and advisory roles. In this way, the people who are to benefit from the services have a say in designing and delivering the services.
How to find Independent Living Centers
If you are interested in locating the center nearest you, there are several approaches you might try:
A. Search on-line for Independent Living Centers in Pennsylvania
B. Look in your local telephone directory under social services. Try both the regular directory and the yellow pages.
C. Contact the main office of the State Vocational Rehabilitation Agency (your local public librarian should be able to help you obtain its address and telephone number) and request that the person responsible for overseeing the agency's independent living program provide you with information on centers in your state.
D. You may also contact the Rehabilitation Services Administration's Office of Independent Living (330 C Street, S.W., Switzer Bldg., Washington, D.C., 20202, 202-732-1400). Staff members will have a listing of the approximately 150 centers it funds. In addition, you may wish to contact us at ILRU. We maintain a comprehensive directory of over 350 programs providing independent living services. This directory is available for $8.50. For persons interested in locating programs in a specific area, individualized searches can be made using the ILRU National Database on Independent Living Programs.
A Final Word on Independent Living
Changes that make life more satisfying don't occur overnight. For people who are willing to work toward greater independence, independent living centers can help put the pieces together.
About this Publication This publication was developed by the ILRU Research and Training Center on Independent Livingof Houston as part of its National Technical Assistance Project for Independent Living. It was written by Laurel Richards and Quentin Smith. ILRU is a national center for information, research, training, and technical assistance for independent living. One of its purposes is to improve the spread and utilization of results of research and demonstration projects in the field of independent living. The ILRU Research and Training Center of Independent Living is sponsored by NIDRR (National Institute on Disability and Rehabilitation Research), U.S. Department of Education. The content of this publication is the responsibility of ILRU, and no official endorsement by the Department of Education should be inferred.
For additional copies of this publication or for more information, contact: ILRU 3233 Weslayan, Suite 100 Houston, TX 77027 Voice: 713-960-9961 TDD: 713-960-0145
ILRU Field Work Staff A National Technical Assistance Project For Independent Living
Laurie Gerken Director of Technical Assistance
Shirley Herzog Administrative Assistant
Laurel Richards Director of Training
Renna Brown Administrative Secretary
Margaret A. Nosek, Ph.D. Director of Research
Rose Shepard Materials Distribution Supervisor