Independent Living is a philosophy and movement centered on the right of persons with disabilities to exercise choice and control over their own lives. It emerged as a rejection of the traditional medical model, which viewed disability as a defect to be fixed by professionals. Independence is defined not as performing all tasks without help, but as the ability to direct one’s life and decide how support services are provided. This perspective reframes the challenge from an individual’s impairment to the societal barriers that prevent full inclusion.
Defining the Philosophy of Self-Determination
The core of the Independent Living philosophy is self-determination, placing the individual with a disability as the ultimate expert on their own needs. This framework asserts that persons with disabilities deserve the same civil rights, options, and control over life choices as their non-disabled peers. The concept of “consumer control” is paramount, meaning individuals who use services must have the power and authority in the management, staffing, and decision-making processes of those services. This ensures support is tailored to individual goals and preferences, not institutional convenience.
A second element is the acceptance of the “dignity of choice,” which includes accepting risk. This philosophy acknowledges that making one’s own choices, even those that might lead to failure, is an inherent part of personal growth. The movement advocates for the rejection of institutionalization, asserting that living in the community is a basic human right, reinforced by the Supreme Court’s Olmstead ruling. This perspective shifts the focus to removing environmental and attitudinal barriers that limit opportunity.
Essential Services and Supports
Translating the philosophy into reality requires tangible services that empower individuals to live outside of segregated facilities. Personal Assistance Services (PAS), often called Personal Care Assistance (PCA), are a cornerstone of this support system. PCA involves non-medical help with Activities of Daily Living (ADLs), such as bathing and dressing, and Instrumental Activities of Daily Living (IADLs), like meal preparation. These services are self-directed, meaning the individual hires, trains, schedules, and manages their own personal assistant, ensuring the assistance aligns with their routine.
Accessible housing is a foundational support, as an individual cannot direct their life if their home environment is a barrier. Accessible homes feature essential structural modifications, including zero-step entryways, wider doorways, and reinforced bathroom walls for grab bars. These elements enable safe navigation within the home, decreasing reliance on external help. Accessible housing must also be integrated within the community, close to employment and social activities.
Accessible transportation ensures a person can fully participate in society by moving outside of their home. Public transit achieves accessibility through low-floor buses, lifts, and securement devices for mobility aids. For those unable to use fixed-route transportation, specialized paratransit services offer comparable door-to-door options, typically mandated by law. These systems must also provide accessible information, such as auditory announcements, to serve passengers with sensory disabilities.
Assistive Technology (AT) encompasses devices and systems that improve the functional capabilities of people with disabilities. AT can be low-tech, like simple reachers, or high-tech, such as voice-activated smart home systems. Mobility aids, including specialized wheelchairs, and communication devices, like augmentative and alternative communication (AAC) systems, fall under this category. The use of AT promotes self-sufficiency by enabling individuals to perform tasks that would otherwise require human intervention.
The Function of Centers for Independent Living
Centers for Independent Living (CILs) are the primary organizational expression of this movement, serving as non-residential, community-based, non-profit agencies. A defining characteristic is consumer control, requiring that over 51% of the staff, management, and board of directors be persons with disabilities. This peer-driven structure ensures that services and advocacy efforts are grounded in lived experiences. CILs promote a cross-disability approach, serving individuals regardless of age or the nature of their impairment.
The organizations provide four core services that support self-determination:
- Peer support involves counseling and mentorship provided by a person with a disability to another, offering guidance based on shared experiences.
- Independent living skills training teaches practical skills necessary for community living, such as budgeting and managing personal assistants.
- Information and referral connects individuals to resources like accessible housing lists and transportation options.
- Advocacy encompasses both individual advocacy to resolve personal issues and systems advocacy to promote legislative change that removes societal barriers.
Legal Protections Ensuring Independent Living
The framework for Independent Living is supported by federal legislation that guarantees rights and ensures access to necessary services. The Americans with Disabilities Act (ADA) of 1990 is a civil rights law prohibiting discrimination against individuals with disabilities in all areas of public life, including employment, public services, and transportation. The ADA mandates the physical accessibility of buildings and transit systems, creating the infrastructure necessary for community participation.
The Rehabilitation Act of 1973, specifically Title VII, established the Independent Living Services and Centers for Independent Living programs. This legislation provided initial federal recognition and funding for CILs and the philosophy of consumer control. Title VII formally enshrined principles like peer support and self-determination into federal policy, providing a legal basis for the development of consumer-controlled organizations. Together, these laws form the legal foundation protecting the right of persons with disabilities to live with dignity and self-direction.