ILRU FIELD WORK
A National Technical Assistance Project for Independent Living
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 brailled 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 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 injury or disease, 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 disability 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, barriers facing them 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, being able to pursue activities of one's own choosing--limited only in the same ways that anyone else are limited.
Independent living should not 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 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--as everyone does.
There are, of course, individuals who have certain mental impairments which may affect their abilities to make complicated decisions or to pursue complex activities. For these individuals, independent living means having every opportunity to be as self-sufficient as possible.
Independent living. It isn't easy, and it can be risky. But millions of people with disabilities rate it higher than a life of dependency and narrow opportunities and unfulfilled expectations.
INDEPENDENT LIVING CENTERS
Fortunately, no one with a disability has to go it alone. The purpose of this brochure is to describe 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 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.
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.
Independent living skills training--centers provide training courses to help people with disabilities gain skills that would 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.
Peer counseling--centers offer a service in which a person with a disability 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.
Advocacy--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 and (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.
In addition, centers 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 often 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 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 1960's and early 1970's, the emerging philosophy of independent living 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 policy makers at all levels to change regulations and to introduce barrier-removing legislature. To address gaps in services, a new method of service delivery was conceived--one which emphasizes the role of people with disabilities in determining kinds of services essential to living independently, directing the delivery of these services, and actually providing these services.
The earliest center was formed in 1972 in Berkeley, California, soon followed that same year by centers in Boston and Houston. 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.
Look in your local telephone directory under social services. Try both the regular directory and the yellow pages.
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.
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 which it funds.
In addition, you may wish to contact us at ILRU. We maintain a comprehensive directory of over 400 programs providing independent living services. This directory is available for $10.00 in print copy or diskette, and $15.00 for mailing labels. For persons interested in locating programs in a specific area, individualized searches can be made using the ILRU National Database of Independent Living Programs.
A FINAL WORD ON INDEPENDENT LIVING
Changes that make life more satisfying don't occur overnight. But, 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 Living of 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 on 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; 2323 S. Shepherd, Suite 1000; Houston, Texas 77019; (713) 520-0232, 520-5136 (TTY), and 520-5785 (fax); e-mail: email@example.com.
ILRU FIELD WORKSTAFF
Laurie Gerken Shirley Herzog
Director of Technical Assistance Administrative Assistant
Laurel Richards Rennea Brown
Director of Training Administrative Secretary
Margaret A. Nosek, Ph.D. Rose Shepard
Director of Research Materials Distribution Supervisor
June Isaacson Kailes, Disability Policy Consultant