Section 14: Advocacy vs. Lobbying

Advocacy is not only a core service of CILs, it is also the driving force in the Independent Living and Disability Rights movements.

The very core of a CIL is a mission to enact social change related to people with disabilities. If we are going to continue to see change for the better in our society, we must speak out about injustice. Advocacy must be a key component of your CIL. It is our history, our birthright if you will. CILs came into being because of the discrimination and injustice in this country against people with disabilities.

However, the line between advocacy and lobbying can be thin and hard to walk. Here are some things to keep in mind.


Let’s start with what you must do instead of what you can’t do with federal dollars.

As you probably know, advocacy is defined in three parts—self-advocacy, advocacy on behalf of another, and systems advocacy. Here is the definition from the regulations found at 45 CFR 1329.4.

Advocacy means pleading an individual’s cause or speaking or writing in support of an individual. To the extent permitted by State law or the rules of the agency before which an individual is appearing, a non-lawyer may engage in advocacy on behalf of another individual. Advocacy may—

  1. Involve representing an individual—
    1. Before private entities or organizations, government agencies (whether State, local, or Federal), or in a court of law (whether State or Federal); or
    2. In negotiations or mediation, in formal or informal administrative proceedings before government agencies (whether State, local, or Federal), or in legal proceedings in a court of law; and
  2. Be on behalf of—
    1. A single individual, in which case it is individual advocacy;
    2. A group or class of individuals, in which case it is systems advocacy; or
    3. Oneself, in which case it is self-advocacy.

While advocacy is a core service required of all CILs, you have some flexibility in how you accomplish it, and it can be done without lobbying.

The strategy used to pass the Americans with Disabilities Act (ADA) included town hall style meetings where people from every state had a chance to express the discrimination they faced day to day. People wrote “discrimination diaries” and shared them in testimony at the state level and before Congress. The nation-wide, blatant discrimination became so obvious that the nation knew it had to pass a law to guarantee the civil rights of people with disabilities.

Those town hall meetings were not lobbying. Advocacy can include public education, policy research, position papers or statements on issues, get out the vote efforts, coalition participation or building, litigation, and boycotts, along with direct action such as that led so ably by ADAPT at the local and national levels. All of these things are allowable for Centers as part of the required service of advocacy, and it is permissible to pay for the time and cost of doing this through the federal funds in your grant.

CAUTION: Advocacy can also include lobbying, both direct and grass roots, but these activities cannot be paid for with federal funds.

Lobbying—You can, but not with federal dollars!

The CILs’ primary funder, HHS, addresses lobbying on their website:

The Department of Health and Human Services (HHS) fully supports federal restrictions on lobbying using federal funds by HHS grant recipients. In general, recipients of federal funds are not allowed to use said federal funding to lobby federal, state, or local officials or their staff to receive additional funding or influence legislation. The citations below provide a statutory/regulatory background as well as Department-wide restrictions and links to the implementing legislation, regulation, or guidance. If you have further questions, please contact the Chief Grants Management Official within the appropriate awarding agency.

As a general matter, these lobbying restrictions preclude recipients from:

  • Spending federal funds to influence an officer or employee of any agency or Congressional member/staff regarding federal awards;
  • Failing to submit required certification and disclosure forms (i.e., SF-LLL);
  • Using grants funds provided to non-profit organizations or institutions of higher education to influence an election, contribute to a partisan organization, or influence enactment or modification of any pending federal or state legislation; or
  • Expending federal funds to influence federal, state, or local officials or legislation.

“Spending federal funds” includes spending time or other resources such as indirect costs and direct travel or other expenses. You must keep track of these separately if you lobby, and make sure you aren’t paying that or the related indirect costs with federal funds.

“Lobbying” is also defined by the Internal Revenue Service, which has authority over your CIL’s nonprofit tax-exempt status:

Direct lobbying refers to attempts to influence a legislative body through communication with a member or employee of a legislative body, or with a government official who participates in formulating legislation. Grass roots lobbying refers to attempts to influence legislation by attempting to affect the opinion of the public with respect to the legislation and encouraging the audience to take action with respect to the legislation. In either case, the communications must refer to and reflect a view on the legislation.

In other words, if you are seeking to influence a vote on legislation, you are lobbying, whether you personally ask for a yes or no vote or if you urge others to convince their representatives to vote yes or no. If you choose to lobby, there are several things you need to sign or file. 45 CFR Part 93, Appendix A, contains a Certification Regarding Lobbying that you must keep on file. Annually, the IRS form 990 asks you about lobbying. You are allowed to do this, remember, but have to show it isn’t your major activity. If you lobby, say so on your 990 (including Schedule C,

You also must clearly identify the time spent in lobbying, including travel time, on your time sheet or personnel activity report. If you, the ED, don’t use a time sheet, you must still complete a record of this time. (The requirement is that you complete an after-the-fact accounting of your time and sign it.) Then the time and indirect costs related to the time must be paid for separately and not from federal grants or pass-through dollars. Typically, fund raising dollars or income from projects not tied to the federal grant are used for this purpose.

Sample Lobbying Activity Policy

Below is a sample lobbying activity policy from Able SC, a CIL based in Columbia, South Carolina, shared by Executive Director Kimberly Tissot.

Lobbying Activity Policy: Able SC fully supports the federal restrictions on lobbying using federal funds. Able SC staff are prohibited from lobbying during work hours or in an official capacity unless the Executive Director provides permission. In such rare situations, you will be required to document your lobbying activities in CIL Suites under “Community Activities” and document your lobbying time on your timesheet using the “lobbying” funding source with a brief description of your activities. Below you will find an example of lobbying activities:

  1. Asking a lawmaker to vote for or vote against legislation.
  2. Getting your consumers/members to contact their lawmakers in support/opposition of a bill. In the last three years, we wrote three bills and all three passed.
  3. Asking for funding for the organization.
  4. If you are unsure the difference between lobbying and advocacy, please ask for clarification from your immediate supervisor.

Resources for a Deeper Dive