Section 1: Definition of a Center for Independent Living (CIL)

The 1978 amendments to the Rehabilitation Act authorized the establishment of the Independent Living Program, which includes the Centers for Independent Living (CILs), with principles founded on 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, and the integration and full inclusion of individuals with disabilities into the mainstream of American society….”

The following is the official definition of a CIL which is found in the Rehabilitation Act, as amended (the Act) and Part 1329 of the Independent Living Program regulations[1]:

Center for Independent Living means a consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agency for individuals with significant disabilities (regardless of age or income) that is designed and operated within a local community by individuals with disabilities; provides an array of IL services as defined in Section 7(18) of the Act, including, at a minimum, independent living core services as defined in this section; and complies with the standards set out in Section 725(b) and provides and complies with the assurances in section 725(c) of the Act and the regulations at §1329.5.

Let’s break that definition down into its important requirements.

Consumer-controlled

The term “consumer control” means, with respect to a Center or eligible agency, that the Center or eligible agency vests power and authority in individuals with disabilities, including individuals who are or have been recipients of IL services, in terms of the management, staffing, decision making, operation, and provision of services. Consumer control with respect to an individual, means that the individual with a disability asserts control over his or her personal life choices, and in addition, has control over his or her independent living plan (ILP), making informed choices about content, goals and implementation.[2] [Emphasis added.]

CILs are unique in that they are led and operated by the people they serve—the disability community. Leaders of CILs don’t just learn about disability; they live it. More than 50% of the CIL’s staff positions and more than 50% of decision-making positions are filled by persons with disabilities, and more than 50% of the board of directors are persons with significant disabilities. Disabilities are self-disclosed—no medical diagnosis or proof is required—but it is essential that people with disabilities control the CIL and that individuals with disabilities control their own lives and planning.

Consumer control on the individual level means that a person with a disability seeking services from a CIL is assumed to be the “expert,” the person with the most knowledge about their condition, circumstances, abilities, experience, and desires.

Community-based

Language in the definition of a CIL above relating to this and to consumer control includes:

…is designed and operated within a local community by individuals with disabilities.

A CIL should assess and respond to the needs of people with disabilities in their service area. CILs should be seen as part of the community, participating in community events and contributing ideas and expertise to the development of the community.

Statewide Independent Living Councils (SILCs) were created, not to supervise or monitor CILs, but to coordinate the assessment of needs of people with disabilities across all of the communities within the state. The primary method for doing this is the State Plan for Independent Living (SPIL), which is a blueprint developed every three years in collaboration with the CILs in the state to identify goals and objectives, unserved and underserved populations, geographic locations, and a method for evaluating the implementation of the SPIL.

From the state level to your local community, you should be able to see how the CILs are part of the community rather than part of a larger bureaucracy. For this reason, CILs may have a different approach or style from city to city as they reflect the needs of their local communities.

Cross-disability

Cross-disability means, with respect to services provided by a Center, that a Center provides services to individuals with all different types of significant disabilities, including individuals with significant disabilities who are members of unserved or underserved populations by programs under Title VII. Eligibility for services shall be determined by the Center, and shall not be based on the presence of any one or more specific significant disabilities.[3]

CILs need to ensure that the environment and services are designed so that people with all types of disabilities — intellectual and developmental disabilities, psychiatric disabilities, sensory disabilities, invisible disabilities, multiple chemical sensitivities, etc. — can participate and benefit. Staff and board members should also reflect the diversity of disability. Policies, procedures, and budget should promote the provision of all types of accommodations, such as a fragrance-free policy; alternate formats for print; interpreters and other modalities for effective communication; etc.

Nonresidential

Although accessible, affordable, integrated housing is a critical need, CILs do not provide housing. They are dedicated to assisting people to find their own housing. In other words, CILs empower people with disabilities to advocate for the services and supports they need to live in the community of their choice. If such services do not exist, the CIL—through systems advocacy—can work with consumers to effect change and garner publicly-funded programs.

Private, nonprofit

Centers are expected to be part of the nonprofit sector in the community. That doesn’t mean that they can’t have earned income; it just means that they are not established for the purpose of making a profit or sharing profits with shareholders. Indeed, CILs are required to conduct resource development activities to leverage their funds, an activity from which the majority of other types of federal grantees are barred. Private means that CILs are not part of any governmental entity.

Provides an Array of Independent Living Services

The Act also designates core services that every Center must provide, and other services that they may provide. Required core services include information and referral; individual and systems advocacy; peer support and peer counseling; independent living skills training; transition from nursing homes and other institutions to community-based living; transition of youth who have completed secondary education to postsecondary life; and diversion from institutional living (providing assistance to those who are at risk of entering institutions so that the individuals remain in the community).

In Conclusion

As you can see, CILs are NOT just another worthy community agency providing services to unserved and underserved populations. CILs must reflect the core values and clearly have consumer control at all levels. This was a radical concept over 40 years ago and still is today. There are still only a few other agencies directed by those from the groups they serve. Consumer control is generally not part of most agencies providing services and support to individuals with disabilities.

Consumer control is about who makes the choices—it does not mean that those choices are unlimited. There are rules that CILs must follow in order to maintain their status as nonprofit organizations. There are restrictions on how federal and state funds can be expended. At times, tension may arise between consumer, staff and board priorities, and federal and state regulations. Abiding by those regulations and maintaining good standing as a nonprofit and a federal or state grantee benefits people with disabilities in our communities. In this way, we can continue to ensure that people with disabilities are at the table when those regulations are defined and that the choices become less limited.

Resources for a Deeper Dive

[1] 45 CFR 1329.4
[2] Ibid.
[3] Ibid.