This last couple of months I have been stunned by how many people have asked me to give them the actual citations that require more than 50% of the board, management and staff of a center be people with disabilities. In a few cases a board is questioning whether they really must hire an executive director who has a disability, or recruit board members from among people eligible for services — at least more than 50% MUST have a significant disability. I have had 4 such requests in the past two weeks. This part isn’t up for discussion, folks. This is the foundation of who we are in independent living. And “more than 50%” of one manager is one. More than 50% of two managers is two. Until a center is large enough to fill three management positions, the executive director must be a person with a disability.

The Rehabilitation Act itself addresses this area, and you will also find layers of information throughout the regulations that apply as well.

The Rehab Act itself, in Section 725 (c) Assurances (2) states that “the center will be designed and operated within local communities by individuals with disabilities, including an assurance that the center will have a Board that is the principal governing body of the center and a majority of which shall be composed of individuals with significant disabilities” and in (6) of the same section, states “the applicant will ensure that the majority of the staff, and individuals in decisionmaking positions, of the applicant are individuals with disabilities”. You can download a copy of the Rehab Act from this site: If that is not enough, here are some references, all from 45 CFR 1329, the regulations related to Title VII of the Rehabilitation Act.

The first piece of information is found in the purpose at 1329.2 where it states: The purpose of title VII of the Act is to promote a philosophy of independent living (IL), including a philosophy of consumer control...

This lets you know that consumer control is the very foundation of IL.  The next references is in 1329.4, the definitions of consumer control: 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.

We do not currently have any further language, because the indicators have not been updated, but in their past reviews the staff of the Independent Living Administration, ACL, HHS has deemed that “management” and “operation” refer to the Board of Directors , that “decision making” refers to the executive director and a management team and that “staffing” and “provision of services” refer to the rest of the staff. Therefore they have consistently required that the board of directors be made up of more than 50% persons with significant disabilities. This term “significant disabilities” mirrors the language regarding who is served by a CIL.

The very definition of a Center, also from 1329.2, is:

Center for independent living (“Center”) means a consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agency for individuals with significant disabilities (regardless of age or income) that—

(1) Is designed and operated within a local community by individuals with disabilities;

(2) 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

(3) 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 §1329.5.

In addition, they define Eligible Agency (for CIL funds) as: Eligible agency means a consumer-controlled, community-based, cross-disability, nonresidential, private, nonprofit agency.

As soon as we receive the updated indicators for CILs, which are still in process, we can confirm any additional consumer control specifics, but as you can see, consumer control is expected throughout your operations including who has oversight of the programs of the CIL.

Regarding SILCs, Section 705 of the Rehabilitation Act states:

(4) Qualifications.

(A) In general. – The Council shall be composed of members–

(i)  who provide statewide representation;

(ii) who represent a broad range of individuals with disabilities from diverse backgrounds;

(iii) who are knowledgeable about centers for independent living and independent living services; and

(iv) a majority of whom are persons who are-

(I)  individuals with disabilities described in section 7(20)(B); and

(II) not employed by any State agency or center for independent living.

I hear that “reverse discrimination” argument now and then. It is not discrimination to have consumer control on your board in that you can still have non-disabled members on the board. They must not be in the majority, however, for the organization to remain in consumer control.

The law and the regulations are very clear on this. I am distressed to think that people in our movement continue to believe that consumer control is not important. This is truly the foundation of all that we are and do in Independent Living.

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Let’s be clear on #IL Philosophy and #ConsumerControl

2 thoughts on “Let’s be clear on #IL Philosophy and #ConsumerControl

  • August 11, 2017 at 3:24 pm

    I am so happy to see consumer control highlighted in your discussion. The philosophy of IL is fundamentally a model of equality serving people who know what it is to be treated unequally; a center is a group of peers supporting each other and working to solve shared problems.
    It is useful to look at “significant disability” as an important term in the legislation. “the term “individual with a significant disability” means an individual with a disability
    (i) who has a severe physical or mental impairment which seriously limits one or more functional capacities (such as mobility, communication, self care, self direction, interpersonal skills, work tolerance, or work skills) in terms of an employment outcome;

    (ii) whose vocational rehabilitation can be expected to require multiple vocational rehabilitation services over an extended period of time; and

    (iii) who has one or more physical or mental disabilities resulting from amputation, arthritis, autism, blindness, burn injury, cancer, cerebral palsy, cystic fibrosis, deafness, head injury, heart disease, hemiplegia, hemophilia, respiratory or pulmonary dysfunction, mental retardation, mental illness, multiple sclerosis, muscular dystrophy, musculo skeletal disorders, neurological disorders (including stroke and epilepsy), paraplegia, quadriplegia, and other spinal cord conditions, sickle cell anemia, specific learning disability, end stage renal disease, or another disability or combination of disabilities determined on the basis of an assessment for determining eligibility and vocational rehabilitation needs described in subparagraphs (A) and (B) of paragraph (2) to cause comparable substantial functional limitation.”
    Two qualifiers “severe” and “substantial functional limitations” describe the intended client and the required staff and board. When people who provide services in a IL Center have a non-severe conditions or have a diagnosis that really isn’t substantially limiting they can’t be counted in the 51%. Nobody can be compared to another another even with the same diagnosis, but what experiences do the disabled commonly encounter and which provide personal knowledge appropriate for the purpose of being a peer to other consumers?
    The Act also says “(m) (2) ) take affirmative action to employ and advance in employment qualified individuals with disabilities” This doesn’t mean non-discrimination policies it means you choose a disabled applicant instead of a non-disabled when they both meet the job requirements.
    When centers don’t hire the disabled person because they perceive the non-disabled applicant to be just as qualified, but less trouble, less expensive, a smaller training investment, they are acting outside the intent of the law. They are not qualified to be a Center for Independent Living.

    • August 12, 2017 at 7:10 pm

      Thank you for weighing in. I appreciate your viewpoint and your comments. I do want to mention, though, that the Title VII definition (for Centers and SILCs), found in 45 CFR 1329 is a little different from the Title I (employment services) definition you mention. Here it is for clarification: Individual with a disability means an individual who—
      (1) Has a physical or mental impairment that substantially limits one or more major life activities of such individual;
      (2) Has a record of such an impairment; or
      (3) Is regarded as having such an impairment, as described in section 3(3) of the Americans with Disabilities Act of 1990 (42 U.S.C. 12102(3)).

      Individual with a significant disability means an individual with a severe physical or mental impairment whose ability to function independently in the family or community or whose ability to obtain, maintain, or advance in employment is substantially limited and for whom the delivery of independent living services will improve the ability to function, continue functioning, or move toward functioning independently in the family or community or to continue in employment, respectively.

      Technically, the term significant disabilities is specifically used to refer to persons served and to more than 50% of the members of the board of a CIL. The term is not used in regard to staff or management; however your point regarding the peer model does make it clear how important it is to have peers — people with significant disabilities — on the staff and in management as well.


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