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This booklet details the fundamentals to help you succeed in forming an active community advocacy group.
It is estimated that there are 49 million Americans who are disabled, making this population one of the fastest-growing in the United States. This fact, along with the passage of the Americans with Disabilities Act, has radically altered the way we view people with disabilities and their place in society. Many communities are realizing the importance of creating an environment where all people can contribute as equal partners.
But even with the best intentions, change is a slow and arduous process. It requires the same grassroots citizen involvement typified by America's move toward independence more than 200 years ago.
"It stands to reason that when communities are empowered to solve their own problems, they function better than communities that depend on services provided by others" -- from Reinventing Government
Leading citizen action advocates David Osborne and Ted Gaebler, authors of the book Reinventing Government, encourage grass roots citizen participation to define issues and develop solutions that are customer driven. The combined efforts of many individuals who passionately support a particular issue or cause is the best method to challenge the status quo and initiate change at the local, regional and even national levels.
To ensure this citizen involvement in the disability policymaking process, many communities have made a commitment to form community-based disability advocacy groups.
Two organizations leading the way in community involvement and citizen participation are the National Organization on Disability (N.O.D.) and the President's Committee on Employment of People with Disabilities (PCEPD) in Washington, D.C. Both have empowered communities across America by forming and strengthening grass roots organizations to bring about positive outcomes in the lives of people with disabilities. In Indiana, N.O.D. and PCEPD are represented by the Indiana Governor's Planning Council for People with Disabilities, which provides information, services and assistance in planning to a network of 200 cities and towns throughout the state.
The formula to create a local advocacy group is a simple one. The well-organized group begins with a committed core group of advocates who can recruit, train and motivate volunteers to champion the cause. The key to a group's success is the ability to gain mainstream community support of activities. With a high level of support, a successful group can influence behavior, affect long-term systems change and attract more and more interested people.
All communities have the basics for forming an active advocacy group. While this book details the fundamentals to help you succeed, the Governor's Planning Council is an excellent resource for additional information. Council staff are available to speak to your community group, provide written information for nearly any disability-related topic, relay local and national case studies, and put you in touch with other community organizations to exchange ideas.
Your Local Disability Representative
The Governor s Planning Council maintains a list of all Mayor's council representatives and N.O.D. Representatives in Indiana. Please feel free to call the Council to find out who the representatives are in your hometown or to find out how to nominate someone in your community to be appointed as the local N.O.D. Representative.
The N.O.D. Representative's responsibility is to act as a liaison between the community and the national organization. He/she is encouraged to coordinate or support a local community group that educates, advocates and addresses needs of people with disabilities in the area.
The beauty of a local advocacy group is that it is an independent body -- flexible, creative, able to adapt to and initiate change...quickly. Advocacy experts recommend several fundamental principles for running community-based organizations:
** From Reinventing Government by Ted Gaebler and David Osborne, and Organizing for Social Change by Kim Bodo, Jackie Kendall and Steve Max.
Advocacy groups are similar to an entrepreneurial organization where goals and objectives are continually examined and improved as the environment changes, according to James E. Swiss, a total quality management expert from North Carolina State University. "Quality is not a static attribute; it is a constantly changing target because it represents a delighted (not just satisfied) customer." What is defined as "high quality" today may not be tomorrow, so stay on top of the issues.
To begin the process, gather a small core of individuals who will assist by recruiting other members. Personally visit those who you think will be sincerely committed to carrying out a meaningful program -- people with disabilities, family members, business leaders, government representatives, service providers, small business owners -- just to name a few. Include community leaders who have connections and influence among government officials, business representatives and other key groups.
Make sure the group is culturally diverse and represents all ages. Diversity will give the group a better understanding of important ethnic and social issues that impact the disability community. Advocacy groups may have as many as 25 members or as few as two or three. Size is not as important as the commitment of the individuals in the group. However, a large group of committed individuals will have a greater ability to change policy in the government and business community.
In your recruiting visits, talk about what the group can accomplish for the disability community, and ask for ideas and feedback on the prospect of forming a local advocacy organization. Seek individual opinions and try to establish similar philosophies. People are more likely to become involved in a group if they help shape its mission and strategies from the beginning.
Empower The Disability Community
An effective group will involve those in your community with disabilities and their family members. At least half of your membership should be made up of people with disabilities. Their insights into the needs of the disability community will give the group focus and direction. By involving people with disabilities, you are empowering them to create change. Their participation in leadership roles and in the general membership says to all members of your group as well as those in your community that people with disabilities are not dependent upon society, They are vital members of society who can work to make improvements.
Empowerment means "buy-in" to the goals of the group. There comes a sense of ownership that will result in a more dedicated, harder working membership.
The First Meeting
After you have enlisted volunteer members, decide on a date and time for the first meeting. Ideally, you should have your mayor or chief-elected official attend. In fact, you may want to plan the meeting around his or her schedule. It is important to have this person's support for the group and its mission. Encourage active participation, and ask the mayor or chief-elected official to serve as honorary chairperson, to lend his or her name to announcements, campaigns and other events. Having the mayor or another political official involved does not mean your advocacy group loses its "independence." Maintaining connections with government officials can only build the strength of your community-based group.
Be sure to choose an accessible place to meet, providing interpreters or accessible reading materials as needed. At the first meeting, discuss the purpose of forming a disability advocacy group and the role of the members. Choose someone to be secretary to record the meeting notes. Ask everyone to introduce themselves and explain their reasons for wanting to become involved. Make sure everyone signs their name, address and telephone number in a register.
To be as organized and productive as possible, it is important to know the rules of running a meeting properly. Much of the following information is taken from the United States League of Women Voters' "Simplified Parliamentary Procedure," based on Robert's Rules of Order. For a copy of the brochure, please refer to the bibliography page.
There are specific parliamentary procedures for the chairperson or presiding officer to follow in order to maintain an orderly flow of business, to discuss and vote on issues, and to nominate and elect officers.
It is the chairperson's responsibility to use the rules of parliamentary procedure appropriately so that the business of the meeting moves forward. At times, the formal procedure may be relaxed as long as the meeting accomplishes its purpose and the rights of absentee members are protected. In general, the group's chairperson should:
Set up a second meeting time and go from there. Ask the recording secretary to type the meeting minutes and distribute the minutes to all members in attendance as soon after the meeting as possible.
A well-organized advocacy group must have clear goals and a well-defined mission.
The goals of your group should relate directly to the unmet needs of people with disabilities in your community. In other words, "the customer is the ultimate determiner of quality," says total quality management expert James Swiss. To determine these needs, your group may want to conduct research. Check on general community services (i.e.: parks, libraries, theaters, grocery stores) to determine if they are fully accessible for people with disabilities. Also, identify any specific programs targeted to people with disabilities. Ask organizations about their services, how many people with disabilities they assist, if there are other organizations in the community that provide similar services, and what the perceived needs are of residents with disabilities.
Talk with consumers to get a feel for the quality of service and what can be improved. Understand what their disabilities are, what information they need, their perceptions of the level of community awareness, their perceptions of physical and attitudinal barriers, their employment status and their educational and recreational needs. Based on these results, you can form your group's goals accordingly. It is crucial to build quality into your organization's efforts early on, rather than react to negativism later in the process.
Share the results of your study so that everyone in the group helps establish goals and objectives. An example of a goal might be: "Remove barriers that prevent the participation and acceptance of people with disabilities in (hometown).
Objectives might include:
You may want to form separate committees based on your objectives and strategies.
Your group must focus on results and, therefore, you need to take on specific issues--not general problems that are too big to tackle. Conquering one issue at a time allows you to make real progress toward achieving your goals. The book Organizing for Social Change indicates that the goals or issues of your advocacy group should meet certain criteria:
A mission statement declares why the organization exists. It must be short enough so members can remember it and recite it when asked about their work with the group. "To enhance the lives of children" or "to improve the community in which we live" are two examples of mission statements. The mission statement should serve as the context for the planning process and a guide for decision-making in the organization. If there is ever a dilemma as to the right road to take on a certain issue, the group can always go back to the mission statement to help steer it along. The mission statement should be reflected on all letterhead, promotional materials and in fund-raising efforts.
To support the mission statement, your organization may want to create a set of guiding principles. Guiding principals would include these components:
Your organization may want to create a longer version of its mission, keeping in mind the elements mentioned, as well as a shortened, easy-to-remember version. The longer version can be stored in the long-range planning file and used at a later time when direction is needed.
Many of the goals your advocacy group may pursue will require a change in policy within your local or state governments. Public policymakers determine the success or failure of public initiatives to change the way things are done. Working effectively with public officials is important to a successful outcome.
Elected officials -- senators, representatives, mayors, city-county councilors, etc. -- do pay attention to those who participate in public policy issues. You can't change the rules if you don't participate.
Be well acquainted with your legislators and other key elected officials -- their political background, what committees they are on, what bills they have and have not supported. Knowing which legislators are likely to support your views and which will need persuading is vital to your campaign's success.
"If you are wondering whether or not it is really worthwhile to communicate your views to your own senator or representative in Congress, consider this fact. Others who disagree with you are doing so constantly. " --former Speaker of the U.S. House of Representatives, Jim Wright
Letter-writing is the most common communication method with elected officials, and it is remarkably effective. Utilizing a fax machine is an even more timely way to reach an elected official.
Phone calls are also effective. While you have your contact on the phone, set up a face-to-face meeting with him or her. To ensure that change is accomplished in your community, it is important for your group to build positive, long-term relationships with key elected and appointed officials (i.e.: city/county council members, school board members, members of other civic boards).
Before contacting your legislators, gather as many facts as possible on the issue to back up your viewpoint. Whether you are supporting or opposing a piece of legislation, clear, concise expressions of your opinion will get priority treatment. Avoid excessive documentation, because it won't be read. Try to make your point in one or two double-spaced pages. Educate your government officials with information they can use, and your organization will gain their respect.
The Legislative Process
Working within the legislative system to propose and actually pass a bill is a long and demanding process. Passing a bill can takes months to years. Yet, passing a bill into law can mean broad, significant impact on the rights of the disability community in Indiana.
Your organization needs to be very familiar with how the legislature operates. The Governor's Planning Council's "The Legislative Process" brochure offers a more detailed look at the legislative process in Indiana. Copies are available at no charge by calling (317) 232-7770 Voice or (317) 232-7771 TDD.
Often change needs to be made within your local government. Every city and town has its own system for setting and changing local policy. Learn the system so you can be effective in your efforts to make policy changes. It is critical to know which elected officials in your community can have an impact on the success of your group's objectives. Know their political philosophies. Build relationships with key officials.
Every city and town in Indiana that employs more than 50 people should have an appointed ADA coordinator designated to provide consultation regarding ADA requirements. Many cities also have local N.O.D. Representatives. Your city's ADA and N.O.D. Representatives will be important players in changing policy within your community.
If your group's work is newsworthy, the value of the news media can lend a credible, third-party endorsement to your efforts. Broadcast and print media provide the most effective means of reaching the public and are crucial to gain community-wide support.
In general, you should feel free to call on the media to report on any newsworthy program, special activity, problem or announcement concerning people with disabilities and the programs being initiated by your advocacy group.
Media Relations Basics
Contact your area publications and television stations to find out who covers specific "beats" or types of stories (i.e. business, feature, healthcare, education). Send your information to the reporter(s) who would be most interested in the information.
Also provide the information to the publication's "city, editor, or "editor," For television, send materials to the assignment editor, and with radio, to the news director. Make sure to develop working relationships with these "news gatekeepers" so they will learn to trust you as an information source.
Information sent to the media is called a news release or news advisory. It should be typed, dated, and clearly describe your group's special event or announcement. Make sure the most important information is listed first, and information about your organization last. Also make sure to include a contact name and phone number so the media can call for more information.
For immediate news, fax or call the media so that they receive the information at least a day in advance. If you are planning a special event, however, alert the media as early as possible so they can include it in calendar listings. When speaking with reporters, determine their deadlines and take notes.
Getting coverage of your news story is sometimes difficult, so don't get discouraged if a television, radio station or newspaper doesn't seem interested. Keep a positive attitude and keep trying. Remember, your information must be NEWSWORTHY.
Here are a few story ideas:
Organize a campaign to send letters to the editor of your local newspaper. Letters to the editor give your group an chance to "state its case" and build support. Letters from people with disabilities and others directly affected by the efforts of your group, along with influential members of your community, can be very effective. Keep your letter short and to the point in order to increase the likelihood it will be printed in the paper.
You can also send a letter asking the editorial editor of your newspaper to draft a column in support of a campaign of your organization. Provide the editor with good background material and focus on a specific issue.
Public Affairs Programs
Television and radio public affairs shows are always looking for guests to speak on topics from the not-for-profit community. Call the public or community affairs director at your local television and radio stations and attempt to schedule a spokesperson speaking on a disability- related topic or upcoming event.
Public Service Announcements
Public service announcements (PSAs) are also used by television and radio stations. Use the following specifications to create a PSA:
If the Media Contacts You
If the media should happen to call you or a member of your group for comment on a particular issue, remember the following things:
If a member of your group is participating in a television interview:
For a radio interview, make sure your main points are rehearsed, provide the interviewer with a list of good questions and your main points, and try to RELAX.
Your advocacy group will inevitably need money in order to get its projects underway. While initial costs may be absorbed by group members or participating organizations, the group will eventually need to have a treasury.
If your group decides to organize a fund-raising campaign, establish a finance committee to prepare a two- to three-year budget. This will help you think through longer-term goals and objectives. When your budget is established, try to involve as many members of the community as possible to help increase your network of donors. Finally, when approaching public- and private-sector organizations, suggest longer-term funding rather than "quick-fix" money that will only carry you through to the next project. This will minimize your fund-raising efforts, and maximize your services to the community.
The key to continual improvement of your recruiting and fund-raising efforts, according to the principles of total quality management, is strong volunteer participation and total member commitment. Every member of your group must be committed to reaching the organization's goals if the group is to succeed. The National Organization on Disability offers six general fund- raising principles that your group may want to follow:
Public and Private Sector Funding Sources
Potential funding sources in Indiana are surprisingly numerous. Use your imagination, particularly targeting companies and government agencies with a special affinity for disability issues. Encourage members of your group to contact acquaintances who are board members or key personnel with an organization likely to support a disability-focused advocacy group.
Don't overlook in-kind donations of products like office supplies, services or personnel. In addition, newspapers may print public service announcements, a local hotel may donate meeting space, or a local construction company may donate labor and materials to build a wheelchair ramp or widen an office door.
(corporations, individuals, foundations, businesses, civic and church groups, and private and non- profit organizations) Indiana has more community foundations than any other state. The Indiana Donors Alliance offers a directory of these and other finding sources statewide. Local libraries will have general resources and information on grants and grant writing. The Allen County Library, Indianapolis-Marion County Public Library and the I.U. Northwest Library in Gary have extensive information from the national Foundation Center on grant and funding sources. For a listing of foundations and other funding sources, check the resources section at the back of this booklet.
(local, state and federal government agencies) City or county commissioners as well as Metropolitan Development offices may have discretionary funds or grants available. The Indiana Governor's Planning Council accepts solicited and unsolicited grant proposals from organizations interested in initiating innovative programs for people with disabilities in Indiana. The Council also offers money through its Consumer Involvement Fund. The Consumer Involvement Fund which helps empower people with disabilities and their families to enhance their knowledge of important issues through scholarships to conferences, seminars, public forums and other events. For information call (317) 232-7770 Voice or (317) 232-7771 TDD.
The most critical part of any advocacy group is the volunteer base, and its effectiveness depends on commitment to the cause. Early on in the formation of a new group, it's easy to get volunteers excited about the group's vision. But once the "real work" begins, it's harder to maintain enthusiasm and volunteer commitment. Eventually, every volunteer group experiences turnover and volunteer apathy. But you can take steps to keep this to a minimum and build motivation.
An important principle according to David Carr and Ian Littman's definition of total quality management, is that "a quality organization results from people working within systems, not individual efforts. When quality slips, it is almost always the system that is wrong, not the people." This is why it is important to set up a solid membership base in the beginning and focus on the future.
The Indiana Governor's Planning Council would like to thank the National Organization on Disability and the United States League of Women Voters for providing information in this booklet. Specific publications for further reading are:
Excellence in Government: Total Quality Management in the 1990s. David K. Carr and Ian D. Littman; Coopers & Lybrand, Arlington, VA.
Getting Involved: The Challenge of Committee Participation; Achieving Goals: Making Your Mark as a Board Member; and Moving Forward: Providing Leadership as the Chief-Elected Officer. American Society of Association Executives, 1575 I Street, NW, Washington, DC 20005, 1985. Guide to Organizing a Community Partnership Program. National Organization on Disability, 910 16th Street NW, Suite 600, Washington, DC 20006, 1989.
Know Your Community. League of Women Voters, 1730 M Street NW, Washington DC 20036; Publication # 288; 1972. A guide to help citizens and civic organizations take a look at the structure and functions of their local government.
The Legislative Process. The Indiana Governor's Planning Council for People with Disabilities, 143 W. Market Street, Suite 404, Indianapolis, IN 46204; 1992.
Opening the Doors to Indiana Government: A Guide to the Open Door Law. Attorney General Jeffery Modisett, Indiana Statehouse, 402 W. Washington Street, Indiana Government Center South, Fifth floor, Indianapolis, IN 46204; 1993.
Organizing for Social Change Kim Bodo, Jackie Kendall and Steve Max: Seven Locks, Press P.O. Box 4466 Carson, CA 90749 (800) 354-5348 Voice; 1991. A guide for people initiating change in their communities; discusses direct action, building coalitions and developing strategies.
Reinventing Government Ted Gaebler and David Osbourne ; Penguin Books USA Inc., 375 Hudson street, New York, NY 10014; 1993. Details the popular philosophy that government does not have to be an inefficient bureaucracy and describes how this philosophy can be applied to all organizations.
Governor's Planning Council for People with Disabilities
(317) 232-7770 Voice
(317) 232-7771 TDD
Association of Rehabilitation Facilities (INARF)
Breaking New Ground Resource Center
(800) 825-4264 Voice
(317) 494-5088 Voice/TDD
Council of Volunteers and Organizations for People with Disabilities (COVOH)
(317) 232-0750 Voice
(317) 232-1150 TDD
Center for Disability Information and Referral
Sponsored by the Indiana Institute on Disability and Community
(800) 437-7924 Voice/TDD
(812) 855-9396 Voice/TDD
The Fund Raising School/IU Center on Philanthropy
(317) 274-7063 Voice
Indiana ATTAIN Technology Project
(317) 921-8766 Voice
Indiana Mental Health Association
(317) 638-3501 Voice
Indiana Protection & Advocacy Services
(800) 622-4845 Voice/TDD
(317) 722-5555 TDD
IN-SOURCE Special Education Resource Center
(800) 332-4433 Voice/TDD
Indiana Institute on Disability and Community
(812) 855-6508 Voice/TDD
Lilly Endowment Inc.
(317) 924-5471 Voice
United Way of Central Indiana Nonprofit Training Center
(317) 925-7104 TDD
Great Lakes Disability and Business Technical Assistance Center -- Region V
(800) 949-4232 Voice/TDD
Disability Rights Education Defense Fund (DREDF)
(202) 986-0375 Voice/TDD
(202) 457-0318 Voice/TDD
Job Accommodation Network
(800) 526-7234 Voice/TDD
National Center on Accessibility (recreation specialists)
(800) 424-1877 Voice/TDD
National Center for Nonprofit Boards
(202) 452-6262 Voice
National Council on Disability
(202) 272-2004 Voice
(202) 272-2074 TDD
National Organization on Disability ( N.O.D.)
(202) 293-5960 Voice
(202) 293-5968 TDD
President's Committee on Employment of People with Disabilities
(202) 376-6200 Voice
(202) 376-6205 TDD
Robert Wood Johnson Foundation
(609) 452-8701 Voice
This document is available in accessible format on request from:
The Indiana Governor s Planning Council for People with Disabilities
143 West Market, Room 404
Indianapolis, IN 46204
(317) 232-7770 (voice) 7771 (TT)
Suellen Jackson-Boner, Executive Director
Christine Dahlberg, Associate Director
Paul Shankland, Grants Administrator