INDEPENDENT LIVING PHILOSOPHY INTRODUCTION

Most people take for granted the opportunities they have to decide where to live, where to work, how to travel, what to do on their spare time, and how to dictate the course of their lives. For many Persons with disabilities, community barriers take away or severely limit their choices.  Barriers may be evident like the lack of a ramp for access to a building or less evident like ignorance or fear.

Millions of Persons with disabilities have established lives of independence. In their communities, they are employers, employees, spouses, parents, students, politicians, taxpayers, advocates, taxpayers, and many other roles. Although the barriers these individuals face have not been removed, these individuals have triumphant in overcoming or dealing with them through training, vicarious learning, information, and support.

Independent Living defined is living just like everyone else while having the same opportunities to make decisions and choices over one’s life. Persons with disabilities, through self-representation and self-advocacy, can pursue activities of their taste and are limited to achieve their goals in the same manner their non-disabled community members are.

In following the outlook of Independent Living Philosophy, Persons with disabilities have the right and authority to pursue any choice they see fit in actualizing their goals and interests while living in their communities. Persons with disabilities are the best experts on their needs and should take the initiative, individually and concertedly, to advocate society viewing them as citizens first and foremost and only secondarily as consumers of medical and social services. Independent Living Philosophy advocates de-medicalization of disability, de-institutionalization and cross-disability. Through their actions, persons with disabilities develop the strategizing and social skills to practice self-determination in their lives. People with disabilities want the same choices as everyone else and do not want to be pitied for their disability but embraced for their worth as a person.

INDEPENDENT LIVING HISTORY

The Independent Living Movement is timed with the black civil rights struggle and with other movements of the late 1960s and 1970s. During these activities, community-based groups of people with different types of disabilities worked together to identify barriers and gaps in service delivery. Action Plans were developed to educate the community and policymakers at all levels to change regulations and introduce polices designed at removing barriers.

In 1962 while taking classes at the University of California in Berkley, Mr. Roberts was housed at the Student Health Service infirmary, a part of Cowell Hospital. By 1967, Cowell hospital had 12 severely disabled students living there. In 1968, it became a formal program managed by the California Department of Rehabilitation. Due to the political activism of the 1960s, these students saw themselves not as patients but as an oppressed minority. While living in the infirmary, students developed a sense of identity due to the barriers they all faced. In response to this oppression, the students began to call themselves the Rolling Quads and protested the restrictions imposed on them by their rehabilitation counselors.

During the same time, Jean Wirth of the US Department of Health Education and Welfare developed a program aimed at overseeing peer counseling and supports for minority college students to reduce the dropout rate. Jean approached the Rolling Quads, asking them to design a similar type of program for students with disabilities.

The program they developed was called the Physically Disabled Students Program (PDSP). The program included provisions for Personal Assistance services, Wheelchair repairs, emergency attendant care, and help in obtaining financial services. PDSP had 3 principles: 1) persons with disabilities were experts on their disabilities, 2) the needs of persons with disabilities can be met with a comprehensive program rather than fragmented services, and 3) people with disabilities should be integrated in the community. As the program gained popularity, people with disabilities that were not students began applying for services. Ed Roberts and other advocates for Independent Living knew they needed to develop a model of PDSP to implement in the community.  In 1972, Ed Roberts and the Rolling Quads established the first center for independent living with a 1-year $50,000 grant from the Federal Rehabilitation Services Administration.

What are Centers for Independent Living (CILs)?

A center for independent living is a consumer controlled, community based, cross disability, nonresidential private nonprofit organization that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services.

Central to the philosophy of the Center for Independent Living is that it is an advocacy group—not a social service agency.

What are the Characteristics of a Center for Independent Living?

51% of staff is persons with disabilities; 51% of Board of Directors is persons with disabilities; and CILs provide four core services.

Compliance Indicators for CILs

1. IL Philosophy is practiced where the CIL is consumer controlled: 51% of Board and 51% of staff are persons with disabilities.
2. CILs are cross disability—serve all disabilities.
3. CILs develop Independent Living Plans with Goals and inform Consumers of their right to a grievance with the Client Assistance Program.
4. CILs conduct Community Education and Outreach.
5. CILs demonstrate they are providing the 4 core services as mandated by the Rehabilitation Act of 1973 as amended.
6. CILs have diversified funding through additional programs or grants.

What services do CILS provide?

1. Independent living skills training: Service teaches persons with disabilities methods to develop the necessary skills to take control of their lives and promote their participation in community activities. Plans are individualized and can be provided in group or individual setting. IL Skills training can be defined as becoming skilled to live an independent life.

2. Individual and systems advocacy: Systems Advocacy: service that works to create broad based change within a system, agency, and community, implementing strategies to increase availability and accessibility of services and resources, and creating equal opportunities for large numbers of people with disabilities. Systems advocacy activities may include speaking out on issues, laws, benefits, and/or practices that affect many people with disabilities.

Individual Advocacy: service on behalf of, for, and most importantly with a Consumer. This service provides training, information, referral, and intervention to, and with, individuals regarding conducting appeals and filing complaints.

3. Peer counseling: Service that allows persons with a disability to meet someone in a similar situation who has learned strategies to live life independently in the community. This service is accomplished in both individual and group settings. The purpose of this service is for people to share thoughts and ideas for becoming independent. To summarize, it is vicarious learning at its best.

4. Information & Referral: Information and Referral consists of providing information to the public and people with disabilities on various topics of personal interest, such as architectural accessibility, adaptive equipment, civil rights, housing, personal care, and transportation. Most times, information will be accompanied by referral to an appropriate community resource or service.

5. Nursing Home Transition/Prevention & Youth Transition: CILs also focuses on preventing individuals from entering nursing homes through education and advocacy. Additionally, TACIL works to provide youth with disabilities Independent Living skills training to succeed disabilities after completion of secondary education to postsecondary life.

In accord with Independent Living Philosophy, CILs transition individuals out of nursing homes into the community, arranging for supports, housing, and other needs. Individuals transitioned out of institutions enjoy a better quality of life in their community and community living saves taxpayers money compared to living in an institution. Being disabled is not a reason to not be able to live in the community; if a person has the desire to live in a community, they should be afforded the same opportunity to triumph or fail like every other citizen. CILs also focuses on preventing individuals from entering nursing homes through education and advocacy. Additionally, CILs works to provide youth with disabilities Independent Living skills training to succeed disabilities after completion of secondary education to postsecondary life.

CILs also provide other services unique to their community needs. Many CILs have additional programs housed in the organization that help promote its mission.