White board, "Advocacy" in red, with three numnered, blank lines underneath.

Let’s be clear right up front. The core service of individual and systems advocacy is a driving force at the heart of the Independent Living Movement. Advocacy has the power to change lives, communities, states, and nations. Major disability legislation and societal changes would not have occurred without the efforts of strong advocates. While individual advocacy is important, it has a narrow impact. Systems advocacy has a broader scope that influences laws, practices, patterns, and problems that affect many people.

The mission of a CIL is to identify, advocate for, and enact social change related to people with disabilities. Equal access is a key element of Independent Living philosophy, and noted in the first paragraph of Title VII of the Rehabilitation Act. If we want our society to extend equal access, to change for the better, we must speak out about injustice. Advocacy must be a key component of your CIL. Although much has changed in the last few decades, the battle for equal access and/or treatment in housing, education, employment, transportation, healthcare, criminal justice, and other areas continues. Advocacy is needed with local, state, and federal systems when they do not adequately address many of these complex issues.

Advocacy is not only allowed with federal funds. CILs are required to advocate as a core service. SILCs are allowed to advocate if they have included advocacy in their State Plan for Independent Living. ACL’s FAQ defines advocacy as: Advocacy is the act of engaging with government officials to educate and provide technical, factual, and non-partisan information about relevant issues. For example, a grantee could meet with an elected official to provide information about grant activities and educate them about the beneficiaries of those activities. They may also respond to written requests from government officials for testimony. Advocacy is a permissible use of federal funding, and certain ACL grantees, including CILs, are required to engage in advocacy. (See 45 C.F.R § 1329.4 for the regulatory definition of “systems advocacy.”

Notice this language — technical, factual, and non-partisan information about relevant issues. Collecting and communicating important information that makes a difference to people with disabilities is allowed with federal funds — which means staff time and center or SILC resources can be used to collect and disseminate key information. We can initiate factual studies or surveys around issues of concern. We can present that information to lawmakers and others of influence. We can study and present fact-based information on a shortage of personal care workers, for example. We can then interview workers or former workers to learn the “whys” of the shortage. Consumers can describe the impact of these shortages on their lives. We are not lobbying for a salary increase when we are providing this non-partisan information. We are presenting facts. We can do this in open testimony, in email, in face-to-face meetings — on time paid for by federal grants — as long as we don’t cross over into support or advice on the vote we want to see on a specific bill. This strategy can be used to address almost any issue that may later become a bill. How has medicaid expansion impacted other states? Share with your state, which isn’t participating. What are the savings to tax payers when individuals are able to stay independent at home rather than served in long-term care? How have the centers in your state diverted individuals from long term care, allowing them to stay at home in the first place? These are important issues for our people, and the IL network in your state should know the answers to these questions and more. Presenting them to key decision-makers — or assisting consumers in telling their stories — will further the cause of Independent Living and the positive reputation of effective Centers in your state.

Some of these guidelines apply to making comments on proposed rules. If we know the impact — factual and non-partisan impact — then comments fall into the advocacy side of things. It isn’t lobbying until you say, “So vote for or against….” at which point you taint the entire advocacy conversation as lobbying and it is no longer allowed with federal funds.

But at some point, in a new conversation, you may want and need to say exactly how you hope your legislator will vote on a specific matter. At that point you are lobbying. Don’t panic – you can lobby, just not with federal funds. It is up to you to keep track of the actual costs related to lobbying — including your time, the costs of any materials developed/copied/distributed, and the related indirect costs. Assure that these costs are paid through non-federal sources. These might be private donations, or proceeds from a free-standing fee-for-service project that doesn’t use any federal funds.

So can a SILC promote a survey of constituents on a matter which is contained within the state plan — and present the results of that survey to an agency or department or Governor or Legislative Committee? If advocacy is included in the SPIL, and this is a SPIL goal area, yes.

Can SILCs or CILs have an advocacy fund where contributions are made for the purpose of supporting advocacy with government officials to further the cause(s) established in the state plan or the CIL’s work plan?  Yes. Such a fund can pay for any advocacy, including lobbying.

Can a SILC or CIL hire or employ attorneys with private funds — or else rely on other legal counsel such as P&As with private funds  — or upon pro bono advocacy by private law firms . . . to further their Independent Living MISSION? Typically the budget is a barrier to hiring an attorney on staff, although some CILs have done so. Using pro bono legal advice and assistance in advocacy would be allowed, and even paying the attorney is allowed if the budget is sufficient.

Can advocacy include actions other than written or spoken testimony? Things like media interviews, op-ed pieces, mobilizing consumers with signs, or filing complaints can be effective advocacy efforts.

You should be advocating — with the disability community — for equal access and justice for people with disabilities throughout your community, your state, and your country.

(Special thanks to Daisy Feidt, Access Living, Chicago for some of the wording describing advocacy.)

What advocacy IS allowed with federal funds?

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