What is Consumer Control for CILs and SILCs?

Here is what is currently required by law, regulations, standards and indicators:

• The board of directors of a Center for Independent Living must have more than 50% members who self-disclose a significant disability.
• The management staff (identified by the CIL as the Executive Director and other management/decision-making positions if applicable) must have more than 50% persons who self-disclose a disability.
• The remaining staff of the CIL (not including management) must have more than 50% who self-disclose a disability.
• More than 50% of the members of the Statewide Independent Living Council must be persons who self-disclose a disability and who are not employed by either a CIL or the state.

For years, we as a field have said “51% or more,” but the actual wording of what is required is “more than 50%.” It may be obvious, but 51% of one is one – so if there is only one manager, the Executive Director, that individual must have a disability. Likewise 51% of two is two. It is likely that very small centers will be required to have 100% of staff and managers who are people who disclose a disability, because there are so few staff.

Notice that the only time the term “significant disability” is used in regulations for consumer control is in relationship to the board of directors of the CIL. The persons served by the CIL must also be persons with a “significant disability.”

I am frequently asked about this requirement, because some CILs and SILCs appear to struggle to find individuals who will fit the requirements of consumer control and also meet the other requirements of a good non-profit board of directors in experience, professional expertise or other characteristics that the board is seeking. Unfortunately, there are times when it appears that the center is coaxing board members, “Come on, don’t you have a disability we can count?” They know they are out of compliance and are seeking numbers to bring them into compliance.

This misses the point, and misses the philosophy of Consumer Control that is to be the underpinning of every Center and SILC.

Sometimes, as a result, there is a discussion among our peers about what disabilities “count” in the 51% persons with disability required on the board, staff and management of CILs and in the 51% of Statewide IL Council members who are not employees of a CIL or the state. The question has been raised regarding whether the individual is “really disabled” or “disabled enough” to form a part of the majority that constitutes consumer control in these various roles.

This question takes the CIL and SILC discussion beyond the compliance requirement and into philosophical territory.

A little history might be helpful as we consider this. In the beginning of IL, when we were involved in developing the first regulations, there was a discussion about how we could determine if people were eligible for services, as well as if they “counted” toward our 51% or not. We were not interested in buying into the medical model, and believed expecting medical proof of disability would take us where we did not want to go. What were we going to do — demand a written diagnosis? Proof that the individual was receiving SSI or SSDI? We gave a resounding NO to the idea of qualifying the person through any medical means, and instead chose self-disclosure as our method for determining disability. That continues to be the requirement. Compliance is based on self-disclosure. You may have people on your board with invisible disabilities who self-disclose. You may have others whose disabilities carry stigma, and despite evidence in their lives that they may have a disability, do not self-disclose. The CIL or SILC can only “count” those who choose to self-disclose. In the case of members of the board of the CIL the disclosure must be that they have a significant disability. Compliance does not require the individual to disclose the name or nature of the disability. Some individuals whose disability is not obvious may decline to disclose out of fear of discrimination – discrimination that we all know still exists. As peers we may be able to discuss this with them individually, because we know there is power in naming and claiming our disability. Advocates can do so much more when they are willing to come “out” about their disability.

I have met a number of people through the years who say they don’t have a disability, but there is evidence that perhaps they do.  When I am close enough to that individual, I may have a conversation inviting disclosure.  This is not something I would do as a stranger, except to discuss some of the rich diversity of disability that is a hallmark of our movement. Moving from a place of shame to Disability Pride is not always easy, and I need to respect the individual journey. Today that is especially true around mental health disabilities, where the public discourse focuses on violence and not the many other aspects of mental illness.

We have talked about minimum requirements for compliance. Sometimes the bylaws of the CIL or SILC expand on the requirements of consumer control. As a private non-profit entity you can require 60% or 70% or 100% of your board members self-disclose a disability. You can require in your bylaws or policies the method for disclosure, and you can require that the disclosure be made publicly. That is not, however, the requirement of the law and regulations. If you choose you can have an application form where the potential board member checks a box “yes” or “no” related to the question, “Do you have a significant disability?” and never ask what the disability is. Another center may delineate in the bylaws that the actual disability will be disclosed so that the CIL or SILC knows that a range of disabilities are represented on its board.

The important question to ask as your CIL or SILC considers this is the philosophical one: Is your CIL or SILC controlled by consumers?

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