Advocacy and Lobbying – a review of the FAQ from ACL

Capital dome with an American flag.

Below is the FAQ from ACL on Lobbying and Advocacy. Next week we will dig deeper into what we CAN do with federal funds, or how to find other funds to pursue lobbying when it is essential to our mission.

Allowable Advocacy Activities for Federal Grantees

Introductory Note: The 1973 Rehabilitation Act as Amended (“the Rehab Act as Amended”), requires Centers of Independent Living (CILs) to perform Core Services, including systems advocacy (29 U.S.C §§ 705(17)(D) & 796f-4(b)(5); defined at 45 C.F.R § 1329.4). ACL and ILA have received several requests for guidance describing allowable advocacy activities to help ensure that ACL grantees, including CILs, can best serve their target populations and meet their grant obligations without violating federal law.

Federal laws and regulations prohibit federal grantees, which includes recipients of funding related to the Rehab Act as Amended, from using federal funds to lobby government officials (18 U.S.C. § 1913; 31 U.S.C. § 1352; 2 C.F.R § 200.450).

The following frequently asked questions (FAQs) are to help clarify how these laws function for ACL grantees. This guidance is intended to help ACL grantees better understand their rights and obligations. It is not a comprehensive guide to every circumstance that could be a violation of the regulations cited above. ACL grantees are responsible for understanding the full scope of their legal responsibilities as federal grantees, and are strongly encouraged to reach out to ACL program officers with any questions about the appropriate use of federal funds.

For the purposes of these FAQs, a “grantee” includes employees; board members; and council members acting on behalf of the grantee, and not in their individual capacity. Grantees should note that they may not act in their individual capacity while they are also operating in an official capacity. (For example, a grantee could not attend a meeting in an official capacity and avoid anti-lobbying regulations by claiming to speak briefly “in their individual capacity” or “in their personal opinion.”)

Q1: What is the difference between advocacy and lobbying?

A1: 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.”)

Lobbying is the act of engaging with local, state, or federal government officials (including elected officials, their staff, and other government employees) with the intent to influence funding, support for, or opposition to a particular issue or piece of legislation or potential appointment. The Anti-Lobbying Act prohibits the direct or indirect use of appropriated funds to pay for “any personal service, advertisement, telegram, telephone, letter, printed or written matter or other device, intended or designed to influence in any manner a Member of Congress, a jurisdiction, or an official of any government to favor, adopt, or oppose, by vote or otherwise, any legislation, law, ratification, policy, or appropriation, whether before or after the introduction of any bill, measure, or resolution proposing such legislation, law ratification, policy or appropriation.” 18 U.S.C. § 1913. While advocacy may inform an official on an issue, lobbying is meant to influence an official’s opinion in a specific way and for a specific purpose. Lobbying is not an allowable use of federal funding, and ACL grantees should be able to provide documentation to show that non-federal funds were used for any lobbying activities.

Example: It would be lobbying if a CIL grantee asked their representative to support or introduce legislation or a specific issue, or allocate more funding to a program such as Money Follows the Person. Since lobbying is an impermissible use of federal funds, any money used to support a meeting discussing support for or opposition to a specific bill or funding stream, including funds used to pay the salaries of individuals engaged in such work, would need to come from a non-federal funding source that permits lobbying activities. In this example, the grantee could instead advocate in a non-partisan, fact-based way by presenting research and data to their federal representative about the impact of Money Follow the Person programs. It would also be advocacy to explain, in a non-partisan and fact-based way, the resources that were (or were not) available to people with disabilities. If both advocacy and lobbying take place during a meeting, the entire meeting is considered a lobbying meeting.

Grantees should carefully document the funding source for any lobbying activity. Upon request, grantees should be able to provide documentation to ACL demonstrating that no federal funding was used to engage in lobbying activities.  

Q2: What is the difference between “direct lobbying” and “grassroots lobbying”?

A2: Direct lobbying is an attempt to influence deliberations or actions by Federal, state, or local legislative or executive branches. Lobbying government officials, as in the example above, is considered “direct lobbying.” Grassroots lobbying, or indirect lobbying, includes efforts that encourage members of the public to contact their local, state, or federal elected officials urging their support or opposition of a specific issue or piece of legislation. In effect, grassroots lobbying involves a federal grantee encouraging stakeholders to lobby. Direct lobbying and grassroots lobbying are both unallowable uses of federal funds. (2 C.F.R § 200.450).


Direct Lobbying: An ACL grantee meets with their state legislators to ask for their support for a law that would expand protections for people with disabilities. The grantee did not support the meeting using federal funding. Although this is direct lobbying, it is permissible because the grantee can provide documentation that shows the meeting was not supported by federal funding.

Grassroots Lobbying: An ACL grantee sends out an action alert urging supporters to contact Congress. The alert asks people to tell their representatives to vote “yes” or “no” on pending legislation. The grantee used office equipment and staff time funded by a federal grant to send out the action alert. This is an impermissible use of federal funds because it is lobbying.

Q3: If I travel to Washington, D.C., for a conference using federal grant funding, can I also visit Capitol Hill to meet with my elected officials? What can we talk about?

A3: Yes, although whether you can use grant funds to pay for the visit depends on whether you lobby your elected officials. There are no restrictions on a grantee’s ability to meet with their federal representatives or attend meetings that are open to the general public, regardless of where you are meeting with them. However, if any part of a meeting involves lobbying, federal funding may not be used to support the costs associated with the meeting, including travel, lodging, or meals.

Example A: A grantee travels to Washington, D.C., for an annual two-day conference, and stays for an extra day to set up meetings with their federal representatives to persuade them to vote a particular way on an upcoming piece of legislation. Because this is lobbying, federal funds may not be used to support this third day of travel, and one third of all costs associated with the trip should be paid for using non-federal funds. The cost of the conference registration may be paid for using federal grant funding only if the grantee does not participate in lobbying as part of the conference.

Example B: A grantee travels to Washington, D.C. for an annual conference, and participates in a “Hill Day” and protest organized by the conference. The grantee meets with federal representatives to encourage support for pending legislation. They also attend a committee hearing and hold up a sign asking representatives not to confirm a candidate for a position. The grantee may not use federal funds to support travel or participation in this conference. If there are other days of grant-related travel that do not involve lobbying, federal funding can support that part of the trip.

Example C: A grantee travels to Washington, D.C. for an annual conference and to meet with their federal representatives to educate them about grantee programs. They arrange to share the meeting with a lobbyist colleague and intend to split time in the meeting; the grantee will advocate about issues related to their grant, and the lobbyist will encourage the federal representatives to allocate more funding to the grant programs. This is considered an impermissible use of funds because the grantee is being used to influence legislation even though they are not actively discussing legislation with their representatives. A grantee would have to give a factual presentation in a way that was sufficiently distinct from the lobbying activity (such as at a different time or location) in order to use federal funds to support this portion of the trip.

Q4: Can federal funding support participation in or preparation for a march, demonstration, or rally? What if the event takes place during an annual conference?

A4: Regardless of when or where the event is taking place, whether or not this is permissible depends on the intent of the event and its scheduled participants. If the march, demonstration, or rally intends to specifically encourage or discourage a Congressional decision, it cannot be supported by federal funding. Federal regulations prohibit grantees from using federal funding to support these types of activities (2 C.F.R § 200.450) where they are intended to influence the “enactment or modification of any pending Federal or state legislation.” Individuals may exercise their right to free speech by participating in such activities in their individual capacity, and federal funding cannot support this portion of the trip. (Refer to Q3, Example A for additional details on which portion of the trip must be supported by non-federal funds.)

If the march, demonstration, or rally will not endorse or condemn a particular piece of legislation, a grantee may participate. Because the grantee may not be able to anticipate whether the event will involve lobbying, grantees are strongly encouraged to review their Annual Notice of Award and consult with their project officer before participating in such activities.

Example: A grantee organization prints flyers and posters announcing a march during their annual meeting, and encouraging members to join them in calling on Congress to take up legislation to improve community living outcomes for people with disabilities. This is not an allowable use of federal grant funding, even if the grantee ultimately does not actually take part in the march.

Q5: Can my organization or I use grant funds at the federal or state level to develop or distribute materials, do phone campaigns, letter writing campaigns, issue actions alerts, urge members of Congress to support legislation, or urge elected or appointed officials to support positions?

A5: No. As discussed above, these are all examples of grassroots lobbying.

Q6: Can my organization inform the public of proposed changes that would impact the populations we work with?

A6: Yes, grantees can and should share this kind of relevant information with stakeholders. The communication should be factual, technical, non-partisan, and related to the specific topic. The materials cannot suggest specific actions or positions, which would be lobbying.

Q7: Can I comment on proposed legislation or regulations?

A7: Yes, at the request of a Member of Congress or federal official, grantees may submit factual, non-partisan comments through official channels related to the proposed legislation or regulation and its potential impact on the populations with which the grantee organization works.

Q8: What are the consequences for using federal funds for lobbying?

A8: If a grantee organization uses federal funds to lobby, ACL may take enforcement actions that include, but are not limited to, withholding cash payments, disallowance, including interest, of unallowable expenses that include the total direct and indirect costs, and/or termination of the award.

Example: An ACL grantee was found to have misused their office equipment by using it to print fliers for a lobbying event. The grantee had to return the costs associated with preparing and printing those fliers to ACL.

Additional Resources:

For More Information:  Please contact your Independent Living Project Officer.

Have you submitted your letter of assurance for the Public Health Workforce funding? Due February 25 (updated)!

In November, the Biden-Harris Administration announced that ACL would receive $150 million to expand the public health workforce within underserved communities including the aging and disability networks.

Funding will be awarded to 11 grantee networks, including Centers for Independent Living – $38.3M* and Independent Living Designated State Entities – $4.5M*. CILs (direct grantees through the Rehabilitation Act in Title VII Part C) will receive funds directly, if they submit a letter of assurance by February 25. DSEs are also direct grantees who must submit such a letter. Requirements are detailed in these notices in the Federal Register: Centers for Independent Living, and Independent Living Designated State Entities (IL DSE). As is explained in the Federal Register notice, we are encouraging IL DSEs to distribute the funding through sub-grants, including to State Independent Living Councils or organizations that receive funding through Part B of the Rehabilitation Act of 1973, as amended, or to Part B centers. To assist their networks with implementing this new program, ACL has published a series of Frequently Asked Questions on their COVID-19 website.  Drop down the menu under “New, Public Health Workforce Grants”.

Funding is targeted to be distributed by March, 2022. Funds must be expended by September 30, 2024. Funding may be used to cover wages and benefits for public health professionals (directly or through contract) responding to COVID-19 and perform public health tasks, as well as the costs of associated equipment, training and supplies for these professionals and indirect costs. These funds are specific to expanding the Public Health Workforce, so cannot be used to pay funds for other, already existing positions unless the position is expanded in hours. Reporting at the end of the grant will be related to FTEs developed. Professional categories covered, which represent a wide range of jobs, functions, and responsibilities found through the aging and disability networks, include:

  • Community health worker
  • Program manager
  • Public health nurse
  • Communication and policy experts
  • Case investigator
  • Contact tracer
  • Social support specialist
  • Disease intervention specialist
  • Epidemiologist
  • Laboratory personnel
  • Informaticians
  • Other positions required to prevent, prepare for, and respond to COVID-19

For CILs, Letters of Assurance should be submitted electronically via email to Content is listed in the Federal Register and includes:

1. Assurance that the award recipient is an entity designated as a Part C funded CIL under the Rehab Act.

2. Assurance that funds will be spent in ways consistent with the purpose of the funding to support the cost of wages and benefits for public health professionals directly, or through contracts. Examples are listed above.

3. Assurance to provide semi-annual federal financial reports and annual program reports that include the number and type of full-time equivalents hired, and activities performed to advance public health.

In the case of the grants to DSEs, award recipients are encouraged to make sub-awards to Part B funded CILs, Statewide Independent Living Councils (SILCs), and/or Part C funded CILs that receive Part B funding. Sub-awards may be allocated through an even distribution or based on information in the state plan for independent living, or other distribution based on need as determined by the chairperson of the SILC and the directors of the CILs in the State for the purposes of this funding. The letter of assurance must addresses this and other areas as noted here:

1. Assurance that the award recipient is the DSE for Part B Independent Living Services.

2. Assurance that funds will be spent in ways consistent with the purpose of the funding to support the cost of wages and benefits for public health professionals, directly or through contract, listed above;

3. Plan for the distribution of funds within the state Part B funded independent living services program. Award recipients are encouraged to make sub-awards to Part B funded CILs, Statewide Independent Living Councils (SILCs), and/or Part C funded CILs that receive Part B funding. Sub-awards may be allocated through an even distribution or based on information in the state plan for independent living, or other distribution based on need as determined by the chairperson of the SILC and the directors of the CILs in the State for the purposes of this funding.

4. Assurance to provide semi-annual federal financial reports and annual program reports that include the number and type of full-time equivalents hired, and activities performed to advance public health.

*approximate – rounded to the nearest thousand and will be adjusted based on actual number of applicants.

Strategic planning: own your process, own your future

A branding iron stamped the words “Own It” on a surface.

Your center is required to have a three year financial and program plan*, and you report on that in your annual Program Performance Report. It isn’t called a strategic plan in the requirements, and you have a lot of flexibility in how you develop and implement your plan. Let’s talk about some key aspects of YOUR organizational plan.

Your plan should be realistic. Your stakeholders — the board, staff, consumers, funders — want to know what you WILL do, not just what you think you might want to do someday. Decide on concrete actions you can take. Write them down, committing to a time line and who is responsible for the work. Then report at board and staff meetings what is actually happening, flowing from the plan.

Your planning process should fit the size and scope of the plan itself. There was a time when non-profits put big money into hiring a facilitator to help develop a written plan. Anyone remember retreats, at fancy conference hotels or rustic camps? These are seldom done any more, for reasons of cost, time, and the pandemic. You may plan over several ZOOM sessions, but they don’t all have to be over a weekend. You may want committees to start the work. There isn’t just one format for putting your ideas into a written plan. Do the work you need to do to focus on each goal.

The board’s role in planning may be different than you think. Sometimes the board of a non-profit is called a “planning board” or a “policy board” or is otherwise defined. The true bottom line, though, is that it is made up of individuals and each comes to the table with their own ideas, especially when it comes to planning. Give those individuals a chance to work on the goal that most resonates with them, especially if you are producing drafts by small groups before the whole thing come together.

Independent Living Philosophy must be prominent and dominant. Many written strategic plans start with a vision statement and a mission before the goals are identified. These are good — but you don’t have to re-write them year after year. The purpose of a center is clear in the Rehabilitation Act, and Independent Philosophy is woven into the very fabric of a center for independent living. This focus should not change, so your mission and vision may not change that much year to year.**

Planning and problem solving are two different processes. If problems become apparent while you are planning, the problem solving will need to happen in a different context. If the area of concern is a key one the planning may have to be suspended while the problem is solved, but you don’t necessarily want the planning team to “fix” the issue, especially if it involves personnel performance or financial support for the issue. The usual management structures should address those issues.

Remember this is a financial and program plan. Is financial sustainability a key part of your planning? A budget that “puts your money where you mouth is” must be in place for the program plan to be successful.

Focus on consumers — who are your consumers and what do they need your organization to do right now? Focus on the people and their real lives will keep your plan real.

*Title VII, Section 725 of the Rehabilitation Act, Assurances, states: 4) the applicant will establish clear priorities through an­ nual and 3-year program and financial planning objectives for the center, including overall goals or a mission for the center, a work plan for achieving the goals or mission, specific objec­tives, service priorities, and types of services to be provided, and a description that shall demonstrate how the proposed ac­tivities of the applicant are consistent with the most recent 3-year State plan…

**Sec. 725 REHABILITATION ACT OF 1973 184
(1) PHILOSOPHY.—The center shall promote and practice the independent living philosophy of—
(A) consumer control of the center regarding decision-making, service delivery, management, and establishment of the policy and direction of the center;
(B) self-help and self-advocacy;
(C) development of peer relationships and peer role models; and
(D) equal access for individuals with significant dis­abilities, within their communities, to all services, pro­grams, activities, resources, and facilities, whether public
or private and regardless of the funding source.

Tools for board self-assessment

The Maine Association of Nonprofits has perfectly summed up the critical importance of regular self-assessments for boards:

A strong, vibrant board of directors is a clear indicator of a healthy organization. Yet even the best organizations need a periodic check-up to ensure that they cannot just survive but will really thrive in today’s environment. To check your board’s vital signs, or to put in place practices and strategies for a healthy and energized board, the best place to start is with a board self-assessment.

Self-assessment and evaluation are worthwhile and critical components to ensure your board is functioning at its highest level and working to accomplish its mission. It may result in board training (an overlooked area) or some focus or action (review by-laws, create fundraising committee, research executive compensation etc.).

Sample Board Evaluation Questions

Please indicate the extent to which you agree or disagree (scale of 1-5 five being agree strongly) with the following statements.

  1. The board did well during the pandemic.
  2. The board monitors and evaluates the performance of the executive director on a regular basis (at least every other year).
  3. All members participate on some level in the evaluation.
  4. Annual performance goals are set by the board and CEO.
  5. The board reviews the compensation package of top executives for reasonableness.
  6. The process of review and compensation is documented in writing.
  7. There is a succession plan in place.
  8. Board members discuss organization-wide policy issues, rather than managing the day-to-day affairs of the organization (i.e., not micromanaging the staff).
  9. The board reviews personnel policies periodically.
  10. The board ensures a whistle blower policy exists.
  11. The board ensures a document destruction policy exists.
  12. Board members regularly read and prepare for board meetings ahead of time.
  13. There is a diversity of board members.
  14. The diversity mirrors the client base.
  15. There is sufficient diversity training of the board.
  16. All members participate in fundraising for the organization.
  17. There is a strategic plan in the last few years and board meetings use the strategic plan to measure progress.
  18. The board reviews and understands financial statements regularly.
  19. Financials controls are in place.
  20. (Open-ended) Do you have suggestions for improvement?

You can develop your own grid or questionnaire, adapt one found on web, or hire a consultant to help with the process.

Here are some additional resources you might find useful:

Board self-assessment – a tool for your board to take it to the next level

This past couple of years have been out-of-the-ordinary. Or maybe have presented us with a new normal (or most probably some of both). Either way, the board as well as the management of your center have had to navigate new policies, new funding, new partnerships, new human resources dilemmas.

More than a dozen individuals gathered around a large table in a conference room with presentation materials in front of them and a table with coffee and refreshments in the back.

Some of you have put the long range, visionary work of the board on hold while navigating this pandemic. This may include strategic planning, a topic we will address in a future post. There is a step before jumping back into planning, though, that I would like to suggest. That step is for the board to evaluate itself. Why? you might ask?

Ann Lehman, in a recent post on Blue Avocado gave these four reasons why your board should evaluate itself:

Peak Performance. Conducting a self-evaluation and assessment for the board is similar to evaluating the performance of a top executive: You start with a job description and conduct a periodic performance evaluation against that description.

Boards are no different—the best boards continue to build on what they are doing well and develop in areas that need strengthening to reach peak performance. Boards that regularly self-assess are also more likely to evaluate the executive director. Additionally, self-evaluation increases the likelihood that meaningful strategic planning occurs, and even fundraising improves.  See Leading with Intent: BoardSource Index of Nonprofit Board Practices (Washington, D.C.) BoardSource, 2021.

  1. Education. Developing the criteria for the board to evaluate itself also forces boards to think about what it is they are doing or should be doing now that the pandemic is receding. What are your board’s benchmarks for success?

As part of this, now is the time for all nonprofits to examine their relationship with racial, ethnic, and gender issues. Has the board been through an examination of its diversity practices? Has it examined its relationship with racial equity? Do the board members reflect the diversity of the community it serves?

What are the board’s responsibilities? What are the fiduciary, managerial, or fundraising roles? Do the agendas and meetings focus on important strategic and generative issues rather than mundane reports? Does fundraising capacity need to improve?

The process of developing questions and indicators for board evaluation helps the board identify its standards for top performance.

  1. Energize and Build Your Team. We sometimes hear board members complain that they do too much listening and not enough participating in leading the organization. Developing and doing the self-evaluation and assessment process is an active step that often energizes the entire board.

Promoting honest conversations around these topics gets them out in the open without any hidden agendas. In these times of authentic discussion about racial equity, has the board done any self-examination? It helps build the board members’ trust and relationships with each other. For example, the board members’ lack of participation in fundraising efforts would be easier to discuss through this assessment model; if done in a constructive rather than a critical manner, it can move the dialogue forward on a broad range of issues.

  1. Create a Roadmap. The assessment results will point to strengths, such as fiduciary or financial knowledge among board members or a dynamic committee structure that can become building blocks for new endeavors.

It will also help the board determine what needs further development or training (e.g., diversity, planning, fundraising, recruitment governance, all come to mind). Assessment helps with better recruitment and orientation in the future, as well as building self-assessment into an ongoing part of the boards process. All of these outcomes can help build the boards’ goals and objectives for the coming year, and you can set time aside at a retreat to discuss, train, or further develop operations.

It is worth noting that an evaluation at a time of crisis may not be appropriate, but if the situation has passed or at least is not at its peak, this would be an opportunity to start to address the issues raised. If you have just added or are about to add new members, an assessment can be an excellent introduction to what it means to be an influential board member today.

Self-assessment and evaluation are worthwhile and critical components to ensure your board is functioning at its highest level and working to accomplish its mission. It may result in board training (an overlooked area) or some focus or action (review by-laws, create fundraising committee, research executive compensation etc.).

Next time: Tools for board self-assessment.

IRS mileage rates for 2022

The IRS just announced the mileage rates for 2022

After decreasing two years in a row, the rate by which taxpayers may compute their deductions for costs of using an automobile for business purposes will go up to 58.5 cents per mile for the 2022 tax year, an increase of 2.5 cents per mile over the 2021 rate.

Notice 2022-03, in which the IRS announced the update on Friday, also provides the standard mileage rate for use of an automobile for purposes of obtaining medical care under Sec. 213, which will be 18 cents per mile, up 2 cents from 2021. The rate for providing services to a charitable organization remains the same, set by statute at 14 cents per mile (Sec. 170(i)).

John F Heveron, Jr. Principal, Heveron and Company CPAs

What you need to know about 1099 Preparation for 2021

In prior years when you paid $600 or more to individuals and unincorporated businesses for services, you were required to issue a form 1099MISC. That form still exists and must be used for certain payments, such as rents, royalties, and other income, but form 1099NEC generally replaces that form for services that are provided to your organization by nonemployees.

NEC stands for nonemployee compensation, and the form is required when you are making payments to an attorney and when you are making payments of $600 or more to an individual or unincorporated business, for services provided.

We often get questions about whether payments to clients or needy individuals are required to be reported on either of these forms. First, it is important to understand that IRS requires these forms so that they can do income matching. If income is reported on one of these forms, IRS will look for it on an individual or other tax return. So, payments that are not income are not required to, and should not be reported on either of these forms. For the same reason, other businesses are not required to issue 1099 forms to charities.

IRS publication 525 describes taxable and nontaxable payments and includes the following:

Gifts and Inheritances. In most cases, property received as a gift bequest or inheritance is not included your income.

IRS’ website also describes aid to individuals, stating that organizations may provide assistance in the form of funds, services or goods to ensure that victims have the basic necessities such as food, clothing, housing (including repairs), transportation and medical assistance.

These payments and services are unilateral or nonreciprocal transactions, because no services are being provided in return. So, no income reporting is required.

John F Heveron, Jr. Principal, Heveron and Company CPAs, Rochester NY

Dos and Don’ts of Donor Recognition

How do you recognize donors?

Working on your annual report? The article below has a link regarding modernizing the report and making it exciting, but it also addresses a key area of donor recognition – printing the names of donors. Be sure to take a look.

At a very minimum, of course, you want to thank your donors personally, either through a thank you note or letter or sometimes a phone call of appreciation. (That call doesn’t have to come from the CEO, but can come from staff, participants, or board members who are trained and capable.) These are people you will go back to someday, maybe soon, to ask for more, so you want to make sure they know you appreciate them. Make sure none fall through the cracks. Automatic monthly donations, if you are lucky enough to have them, can be missed and you really mustn’t. Maybe you will decide against thanking every time, but I advise you tread carefully. Those regular subscribers are your bread and butter.

I suggest a Thanksgiving letter to all your donors. (Time to plan for next year!) This is before the Christmas rush of requests for new donations, and lets them know at an appropriate season that you really appreciate them. When you can personalize the letter, even better.

Some donors, frankly, expect to be recognized more substantially. Other ways that donors are recognized: A gift, often a gift with the name of your organization. Sometimes the size of the gift is bigger with the bigger donation. The value of the gift is deducted from the donated amount for tax purposes. Pens to notepad notes to bumper stickers to certificates or medallions can serve this purpose. Note, though, that fund raising expenses are not allowable with your federal grants so these premiums and gifts aren’t allowed either. When the donation is significant, sometimes a room or a building is named after that donor. Sometimes there is a donor wall with the names of donors over a certain amount affixed to the wall in some way, from leaves on trees to bricks to small engraved plaques. And there is that list in your annual report. Take a new look at that — the article below is worth reading.

What other services can a center provide?

Our Services
Our services.

All centers are required to provide what are called in the Rehabilitation Act and the regulations in 45 CFR 1329 (definitions) “core services”. Those services are:

Independent living core services mean, for purposes of services that are supported under the ILS or CIL programs –

(1) Information and referral services;

(2) Independent Living skills training;

(3) Peer counseling, including cross-disability peer counseling;

(4) Individual and systems advocacy;

(5) Services that:

(i) Facilitate the transition of individuals with significant disabilities from nursing homes and other institutions to home and community-based residences, with the requisite supports and services. This process may include providing services and supports that a consumer identifies are needed to move that person from an institutional setting to community based setting, including systems advocacy required for the individual to move to a home of his or her choosing;

(ii) Provide assistance to individuals with significant disabilities who are at risk of entering institutions so that the individuals may remain in the community. A determination of who is at risk of entering an institution should include self-identification by the individual as part of the intake or goal-setting process; and

(iii) Facilitate the transition of youth who are individuals with significant disabilities, who were eligible for individualized education programs under section 614(d) of the Individuals with Disabilities Education Act (20 U.S.C. 1414(d)), and who have completed their secondary education or otherwise left school, to postsecondary life. Individuals who have reached the age of 18 and are still receiving services in accordance with an Individualized Education Program (IEP) under IDEA have not “completed their secondary education.

Sometimes centers are surprised to learn that there is more. With the caveat that any services provided must be consistent with the philosophy in Title 7 of the act, and that centers must be “non-residential”, which provides context for anything related to housing, Title 1 Section 7(18)(B) includes the following:

18) INDEPENDENT LIVING SERVICES.—The term ‘‘inde­pendent living services’’ includes—
(i) counseling services, including psychological, psy­chotherapeutic, and related services;
(ii) services related to securing housing or shelter, in­cluding services related to community group living, and supportive of the purposes of this Act and of the titles of this Act, and adaptive housing services (including appro­priate accommodations to and modifications of any space used to serve, or occupied by, individuals with disabilities);
(iii) rehabilitation technology;
(iv) mobility training;
(v) services and training for individuals with cognitive and sensory disabilities, including life skills training, and interpreter and reader services;
(vi) personal assistance services, including attendant care and the training of personnel providing such services;
(vii) surveys, directories, and other activities to iden­tify appropriate housing, recreation opportunities, and ac­cessible transportation, and other support services;
(viii) consumer information programs on rehabilitation and independent living services available under this Act, especially for minorities and other individuals with disabil­ities who have traditionally been unserved or underserved by programs under this Act;
(ix) education and training necessary for living in a community and participating in community activities;
(x) supported living;
(xi) transportation, including referral and assistance for such transportation and training in the use of public
transportation vehicles and systems;
(xii) physical rehabilitation;
(xiii) therapeutic treatment;
(xiv) provision of needed prostheses and other appli­ances and devices;
(xv) individual and group social and recreational serv­ices;
(xvi) training to develop skills specifically designed for youths who are individuals with disabilities to promote self-awareness and esteem, develop advocacy and self-empowerment skills, and explore career options;
(xvii) services for children;
(xviii) services under other Federal, State, or local pro­grams designed to provide resources, training, counseling, or other assistance, of substantial benefit in enhancing the
independence, productivity, and quality of life of individ­uals with disabilities;(xix) appropriate preventive services to decrease the need of individuals assisted under this Act for similar services in the future;
(xx) community awareness programs to enhance the understanding and integration into society of individuals with disabilities; and
(xxi) such other services as may be necessary and not inconsistent with the provisions of this Act.

Your center’s strategic and/or work plan should address which of these you provide and how you approach those services.

The best definition of Ableism I’ve found …

From Sitting Pretty: The view from my ordinary, resilient, disabled body by Rebeka Taussig, PhD.

Sitting Pretty: The View from My Ordinary Resilient Disabled Body Kindle Edition
Orange book cover with the image of a blond white woman in a yellow shirt and black shorts and shoes, gesturing/dancing. The words on the cover are “Sitting Pretty – The View from my Ordinary Resilient Disabled Body. The author is Rebekah Taussig.

“It feels like a risk relying on the word “ableism,” but I want to use it here, because I’m hoping to assemble something with you—something big and intricate—and in order to do that, we need some building blocks—language big enough to hold stories, allow for intellectual exploration, and keep track of patterns. My definition of ableism is a little different from the one in the Oxford English Dictionary, which simply says, “Discrimination in favour of able-bodied people.” Based on my decades of experience and a whole lot of reading of disability studies scholars, I find this definition insufficient. First, it’s built on the assumption that there is a distinct category of “able-bodied” people. While language that makes distinct categories can be useful (you’ll sometimes see me use the term “nondisabled” to illustrate larger patterns), relying too heavily on this black-and-white definition of “able-bodied” is dangerously misleading. It breezes much too easily over the inherent ambiguity built into having a body. “Able-bodied” invites images of ruddy-cheeked farm boys lifting bricks up ladders. Who are these people? And really, how many of us fit sturdily in this category? The legal definition of disability written into the 1990 Americans with Disabilities Act highlights the fact that disability is a far-reaching word that can attach itself to all sorts of bodies, many of them that appear perfectly “able” or are exceptionally able in one area but not as much in another. In fact, our ruddy-cheeked farm boy might also have seizures a few times a year or bipolar disorder or be somewhere on the autism spectrum. The images that come to mind when we use a word like “able-bodied” are just too one-dimensional to be terribly useful.

“The Oxford English Dictionary definition also leaves little room for one vital piece of the story: disability is shaped just as much, if not more, by context than by the body. For example, before spectacles were invented, our population included a much greater number of people categorized as blind. Technology has changed the experience of so many bodies, and as eyeglasses have become integrated into our fashion industry, the stigma around vision that deviates from the “ideal” 20/20 has shifted. (In fact, I’ve owned a decent number of fake eyeglasses in my day. It’s a real thing.) We don’t tend to equate a person wearing glasses with “disability,” even if that same person would have been considered disabled in another time and place. And finally, people are often shifting in and out of a “disabled” state; they break a limb or get the flu or have horrible period cramps or become pregnant or (gasp!) age, and suddenly they find themselves experiencing disabling limitations. If we live long enough, all of us, without exception, will become disabled. This is a prerequisite to having, living in, being a body. The idea that some of us are firmly fixed in the “able-bodied” category is a fiction. A world built on speed, productivity, more, more, more! and far too few bathrooms (and bathroom breaks) does not consider or care for the actual bodies we live in. In other words, ableism affects all of us, whether we consider ourselves disabled or not. Because the disabled body is most powerfully affected by ableism, it is the first to cast a light on the structure, to resist and protest it, to call for its public execution, but we’re all living under its dictates. Ableism punishes all of us. In its most boiled-down, squished together, simplified form, ableism is the process of favoring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look, or need differently from that vision. Often, the greater the deviation, the greater the discrimination. In other words, ableism is one possible answer for a young girl seeing herself as valuable as a princess one week and deflating into shame and self-loathing the next. (Thanks for all you do, Oxford English Dictionary, but my definition is better.)

“Without using the “ableism” word, I tried to communicate some of this to (my brother) David. He was nodding along, but I could still feel the chasm between what I know in my blood and my bones and what I’m able to hand him. It’s like we grew up right next to the roar of Niagara Falls, but at some point I moved to a cabin in the quiet woods, and now I’m back home, yelling over the noise, trying to explain how overwhelming it is, but David can hardly hear me or the waterfall. What words could I gather to make David feel the rumble surrounding us? Ableism thunders in the background of every conversation, every story, every building. It’s the atmosphere we breathe, a body of principles, rules we live by. We learn its tenets like we learn about good and evil: with subtle and consistent reinforcement. Not only do we avoid questioning them, it doesn’t even occur to us that there’s anything to question. Ableism pushes assumptions like: Some bodies/minds/modes are inherently and always preferable to others. Hearing/speaking is always better than deafness/signing. Bipeds walking is definitively preferable to paraplegics wheeling. Each of us has a “whole,” “unmarred,” “perfect” body that we were meant to have; the paralyzed, autistic, deaf version is just a sadder, lesser version of that original intent. (This tenet is wrapped up in narratives of fat, aging, gender-nonconforming bodies, too, of course.) The worth of a body is measured by its capacity for work and/or the longevity of life it’s able to sustain. Bodies are products; scars, breaks, and changes in function make that product less valuable. Dependence is inferior to independence. Only some bodies require help, and those bodies are a burden. It’s only practical to shape the world with the “majority” in mind (and there is such a thing as a majority). Disability is always, only a deficit; the world would be a better place if we could figure out a way to eliminate it entirely. And on and on and on . . . If you find yourself nodding along with any of these ableist beliefs, that makes sense. They’ve been a part of our daily diets since infancy. They’ve made us terrified of aging, wrinkles, belly fat, age spots, sagging skin, and stretch marks. They’ve turned us into work machines who regularly abuse our bodies to demonstrate our value—sleep less, work harder, always! They’ve made us ashamed to ask for help, to take medication, to use mobility aids. They stifle our capacity to imagine other ways of being in the world. In order to be okay, we must always strive to be the ideal human: young, smooth, tight, fit, radiant, spry, boundless, unstoppable, independent. Because if we start to spill out of this tiny little mold, what will it mean? Who will we be? It takes hard work and intention to undo these ideologies. They’re loud, insistent, and reinforced at every turn. In fact, the concept of ableism is so deeply entwined with our culture, and, by extension, the wiring of my own self-perception, that sometimes it can be difficult for me to name.

“I can bend to its insistence just as much as anyone else. Just yesterday I whined to my co-worker about my aging face. “I don’t even want to look in the mirror!” I said, covering my face with my hands and making a charming bleh sound. Yeah, I’m not the picture of post-ableism enlightenment you’ve been looking for. Pinpointing the elements that make up an atmosphere of ableism can feel distant and abstract, like knowing the elements that make up oxygen versus knowing what it feels like to breathe in and out. How do I take you through the inhales and exhales?—the way it feels when it’s not just a formula in a textbook but an experience that shapes your every day? Ableism constricts whenever I look for affordable, accessible homes in Kansas City (are there really only three?) or try to navigate the puzzling world of Medicaid in an attempt to keep living. I feel ableism straining my body under the rigidity of inflexible work systems that do not make space for, understand, care for, or believe bodies in pain. I feel the confines of ableism whenever I take the three steps from the driver’s seat to the gas pump and forget to breathe in my concentration to make those three steps look as normal and steady as possible, even though it’s much easier for me to drag my feet and swing my hips across the same distance. Ableism recommends I put myself through pain and expend extra energy to make sure those strangers walking out of 7-Eleven with a Slurpee don’t stare at me, pity me, mock me for the way I move my body. I wanted David to feel this with me. How do I upload a life of memories, a dictionary of definitions, a planet of feelings? How many times would he need to see people avert their gaze, pull their children back, or fall over themselves to dive fifteen feet out of my way or frantically scramble to open a door lest I attempt to open it myself before he’d know what it means to be both invisible and in the spotlight? At what point would the staring start to make him feel unsteady? How can I take him with me through every grocery store where half of the items tower above my head, every obstacle course sidewalk, each maze between me and the ramp at the back of the building next to the garbage dump, every bar and bank and café with counters so high they erase me from the room, every restaurant and airplane where the toilet is entirely inaccessible to me? Would these field trips illuminate why I started to believe I didn’t belong, wasn’t welcome, didn’t have an invitation to be here? Would it solve the puzzle of a smart, competent girl becoming convinced that she’d never be able to join a workforce that exists on this planet? What hour could he live with me that would give him a glimpse of the power health insurance has over my life?

“I ask these questions, not just for David or because I want to understand myself, but because I know I am not the only one who has been relegated to the outside, assigned to the seats designated for Others. So many of us grew up (and continue to exist) under crushing systems—racism, sexism, ageism, classism, homophobia, size discrimination. These structures are like factories pumping out blueprints, designs, infrastructures, tools, and stories that shape our world. They have been running for so long, shaping our cultural history and current landscape, that a lot of us don’t even notice the billows of smoke jetting out of their industrial-sized stacks. They are fueled by the worth and power stolen from whole communities. They distort our sense of self, keep us quiet, and make us feel both small and like we’re an enormous problem, both invisible and put on display, both a spectacle and swept under the rug. This act of thievery can be loud and violent, or quiet and sneaky. There are ways these oppressive systems overlap, feed off each other, mirror one another, and there are also ways they remain uniquely distinct. As a white, cis-gendered, straight woman who grew up in a middle-class family, I won’t pretend to understand most of these structures intimately. Even in my disabled body, I carry a world of privilege. From where I sit and what I can see, though, shame seems to be a bestselling product pumped out of all of these crushing systems. So how do we open the eyes of someone already on the inside to what’s happening on the outside? Can we trace the ripples well enough to name the larger patterns?

“As much as numbers put me to sleep, sometimes they capture the scope of the problem in a way a string of observations can’t. So here’s some data on the United States gathered by Cornell University in 2017: At the time of the study, a person was well over twice as likely to live below the poverty line if they had a disability. The average annual income for a disabled person was $25,400 less than for a nondisabled person. About 80 percent of nondisabled people were employed, compared with 36 percent of disabled people. We could pull many different insights out of these numbers, but one thing is clear: there’s a gaping, fundamental disparity between the choices granted to disabled and nondisabled folks. Then again, numbers catch only so much. Ableism can be hard to hold on to or pinpoint, because it morphs. It lives in distinctly personal stories. It takes on ten thousand shifting faces, and for the world we live in today, it’s usually more subtle than overt cruelty. Some examples to start the sketch: the assumption that all people who are deaf would prefer to be hearing—the belief that walking down the aisle at a wedding is obviously preferable to moving down that aisle in a wheelchair—the conviction that listening to an audiobook is automatically inferior to the experience of reading a book with your eyes—the expectation that a nondisabled person who chooses a partner with a disability is necessarily brave, strong, and especially good—the belief that someone who receives a disability check contributes less to our society than the full-time worker—the movie that features a disabled person whose greatest battle is their own body and ultimately teaches the nondisabled protagonist (and audience) how to value their own beautiful life. All of these are different flashes of the same, oppressive structure.

“Ableism separates, isolates, assumes. It’s starved for imagination, creativity, and curiosity. It’s fueled by fear. It oppresses. All of us. When I was small and just learning how to do life in my body, I didn’t hesitate, didn’t hold back, didn’t worry how it would look, didn’t look for cues or ask for a line. My imagination ruled. I saw no incongruities in being both a puppy rolling around in the mud and a poised princess. I wore dress-up gowns on afternoon trips to the library and drew magic-marker purple diamonds across my forearms and shins. I didn’t wonder what dancing could or should be; I moved my body to music and called it dancing. I used the shelves and cabinets in the kitchen to climb onto the counter, and crawled headfirst down the hardwood stairs at top speed. I scooted around the neighborhood on a red tricycle with streamers flowing out of the handlebars. I was entirely free to be, driven by the innovation my body inspired. This is the wild emancipation I wish for all of us—a world where we are all free to be, to move, to exist in our bodies without shame; a world that isn’t interested in making all of its humans operate in the exact same way; a world that instead strives to invite more, include more, imagine more. That world sees the humans existing on the margins and says, You have what we want! What barriers can we remove so we can have you around? What do you need? How can we make that happen? “When you grow up in a world that doesn’t see you or welcome you or include you or represent you, you believe the world isn’t for you,” I finally told David. “It’s for all the other people.” The ones being seen, welcomed, included, represented. This is why I want to unbury the stories, to bring them into the light, to let them breathe in the open air. Because our stories matter. Not only are we a part of this, but we’re a vital missing piece. Thank you for asking, David—and anyone who’s reading this book. Even more, thank you for doing your best to listen, even when my words feel unfamiliar or uncomfortable. Here’s to building new narrative pathways through our brains, our spaces, our stories. Here’s to dismantling ableism, building a bonfire from its pieces, and toasting marshmallows over the flames.”