BUILDING A STRONG FOUNDATION in a Rapidly Changing Environment TAKING CHARGE Leadership and Systems Advocacy February 10-12, 1997 Tempe, Arizona IL NET NCIL/ILRU National Training & Technical Assistance Project 1997 ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713-520-0232 (v) 520-5136 (TTY) 520-5785 (fax) Permission is granted for duplication of any portion of this manual, providing that the following credit is given to the project: Developed as part of the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Developers of this TRAINING MANUAL: June Kailes Laurel Richards Bob Michaels Rose Shepard Cynthia Dresden Raymond Lin Dawn Heinsohn Anne-Marie Hughey TABLE OF CONTENTS Agenda 1 List of Trainers and IL NET Staff 5 About the Trainers 7 June Kailes 7 Bob Michaels 7 About NCIL 7 About ILRU 8 About the IL NET 9 Systems Advocacy: Benefits and Learning Objectives 13 Overheads: Advocacy Definitions 15 Advocacy Definitions 17 The Bootstrap Solution 19 Overheads: Oppression 21 Disability Pride: The Interrelationship of Self-worth, Self-empowerment, and Disability Culture: Table of Contents 33 Exercise Identification of Stereotypes Associated with Disability 35 List of Common Stereotypes (Optional) 37 Exercise How Have Disability Stereotypes Affected You? 39 Exercise Media Messages 41 Exercise What to Do about Disability Stereotypes? 43 What Is Your Role? 45 Exercise Strengths that Result from Living with Disability 47 Oh, Mona Lisa, I Never Thought of You as Being Disabled 49 Exercise The 'Environment' Often Causes the Real Disability 51 Exercise The Activist Leap 53 Handout: The Activist Leap 55 A Little History Worth Knowing 57 The Role of Independent Living Centers in Promoting Civil Rights for Persons with Disabilities 59 Overheads: Power 61 Overheads: Discovering the Leaders Among Us 65 Overheads: Infrastructure 67 Overheads: Leadership 69 Managing Things and Leading People 71 Creating Leadership Energy is an Inside Job 73 Overheads: Planning 75 Boilerplate Letter to Elected Representatives 79 Overheads: Services 81 Overheads: Training 85 Overheads: Funding Systems Advocacy 87 Telephone Alert System 89 Sample Telephone Alert Form 91 Telephone Tree 93 Legislative Advocacy Pre-test 95 Political Contact Report Form 99 8 Tips for Communicating with Public Officials 101 Organizing Strategies Skit One: 'Do-Gooder Dave's Dilemma' 103 Organizing Strategies Skit Two: 'Advocate Dave' 105 Overheads: Lobbying 109 The Lobbying Test 113 Lobbying Restrictions for Recipients of Federal Funds 115 Frequently Asked Questions About Lobbying and CILs 117 A Practical Guide to the IRS Rules on Lobbying by Charities 123 Systems Advocacy Scenario One: 'They Just aren't Motivated' 143 Systems Advocacy Scenario Two: 'Who Gets Credit?' 145 Systems Advocacy Scenario Three: 'John's Dilemma' 147 Systems Advocacy Scenario Four: 'Jane's Dilemma' 149 Systems Advocacy Readings 151 Legislative Advocacy Resources 155 IL NET Resource Materials 157 National Resources on Independent Living 159 Readings for the Independent Living and Disability Rights Movements 163 Evaluation 171113 TAKING CHARGE: LEADERSHIP AND SYSTEMS ADVOCACY AGENDA MONDAY, FEBRUARY 10, 1997 An Introduction to Leadership Development and Systems Advocacy 8:30 - 9:00 Continental Breakfast 9:00 - 9:10 Introductions 9:10 - 9:30 Icebreaker 9:30 - 9:45 Understanding Oppression 9:45 - 10:00 The Relationship Between Advocacy and Leadership 10:00 - 10:25 How to Recognize Oppression 10:25 - 10:40 Break 10:40 - 11:20 How to Recognize Oppression 11:20 - 11:45 The Activist Leap 11:45 - 12:00 The Genesis of a New Leader 12:00 - 1:30 Lunch 1:30 - 2:00 How Systems Oppress People Identifying New Leaders 2:00 - 2:30 How Funding Sources Oppress Centers 2:30 - 3:00 How Centers Oppress People 3:00 - 3:15 Wrap Up 3:15 - 3:30 Break 3:30 - 4:30 Power 4:30 - 5:00 Discovering Leaders Among Us TUESDAY, FEBRUARY 11, 1997 Overcoming Leadership and Systems Advocacy Hurdles 8:30 - 9:00 Continental Breakfast 9:00 - 10:00 Advocacy: Reality or Rhetoric 10:00 - 10:15 Leadership 10:15 - 10:30 Break 10:30 - 11:30 Planning 11:30 - 12:00 Process and Outcomes 12:00 - 1:30 Lunch Building Leadership and Systems Advocacy Skills 1:30 - 2:00 Services 2:00 - 3:00 Training I. Civics Like You've Never Heard It Before II. Fact Finding 3:00 - 3:15 Break 3:15 - 5:00 Training (cont.) III. Organizing Strategies IV. Putting Leadership Development and Systems Advocacy to Work in Your CIL WEDNESDAY, FEBRUARY 12, 1997 Keeping Leadership Development and Systems Advocacy Alive 8:30 - 9:00 Continental Breakfast 9:00 - 9:45 Lobbying 9:45 - 10:00 Break 10:00 - 11:00 Monitoring and Evaluation 11:00 - 12:00 Wrap-up/Evaluation LIST OF TRAINERS AND IL NET STAFF TRAINERS June Isaacson Kailes 6201 Ocean Front Walk, Suite 2 Playa del rey, CA 90293 (310) 821-7080 (V); 827-0260 (fax) jkailes@tsbbs02.tnet.com jik@pacbell.net Robert Michaels 65 E. Kelly Lane Tempe, AZ 85284 (602) 961-0553 (V); 961-0533 (fax) michaels@tsbbs02.tnet.com NETWORK STAFF NCIL Anne-Marie Hughey Raymond Lin 2111 Wilson Blvd., Suite 405 Arlington, VA 22201 (703) 525-3406 (V); 525-3407 (TTY) 525-3409 (fax) ncil@tsbbs02.tnet.com June Isaacson Kailes (see above) Roland Sykes President, Greater Independence through Management Programs, Inc. 6256 Ramblewood Drive Dayton, OH 45424 (513) 327-8360 (V) rsykes@tsbbs02.tnet.com ILRU Laurel Richards Bob Michaels (see above) Cynthia Dresden Dawn Heinsohn Laurie Gerken Redd 2323 S. Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (V); 520-5136 (TTY) 520-5785 (fax) ilru@tsbbs02.tnet.com ABOUT THE TRAINERS June Isaacson Kailes has been active as a disability rights advocate and program developer in the independent living movement since the late 1960s. June consults for and trains businesses, universities, government entities, centers for independent living, and other not-for-profit organizations. Prior to establishing a full-time consulting practice in 1989, June worked for the Westside Center for Independent Living (WCIL) in Los Angeles. During her eight years as executive director, she established WCIL as one of the largest, most respected independent living centers in the United States. One of the original national leaders in the independent living movement, June has held many offices in the National Council for Independent Living and the California Coalition of Independent Living Centers. She serves as co-director of curriculum development and training with the IL NET. Among many diverse publications, June's latest book is A Guide to Planning Accessible Meetings. Bob Michaels is co-director of curriculum development and training with the IL NET and is training and technical assistance associate with ILRU. Prior to his position with ILRU, Bob was president and chief executive officer of Liberty Resources, Inc., in Philadelphia, Pennsylvania, for four years. A long-time advocate for independent living, Bob has served as director of the Arizona Bridge to Independent Living in Phoenix, Arizona, and on both the Arizona and Pennsylvania state independent living councils. He has been chair of the Rehab Act Subcommittee for the National Council on Independent Living (NCIL) for the past ten years. Bob has written numerous articles and briefs on the Rehab Act and related topics and has conducted training programs for CILs and SILCs nationwide. ABOUT NCIL Founded in 1982, the National Council on Independent Living is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to standardize requirements for consumer control in management and delivery of services provided through federally-funded independent living centers. Until 1992, NCIL's efforts to foster consumer control and direction in independent living services through changes in federal legislation and regulations were coordinated through an extensive network and involvement of volunteers from independent living centers and other organizations around the country. Since 1992, NCIL has had a national office in Arlington, Virginia, just minutes by subway or car from the major centers of government in Washington, D.C. While NCIL continues to rely on the commitment and dedication of volunteers from around the country, the establishment of a national office with staff and other resources has strengthened its capacity to serve as the voice for independent living in matters of critical importance in eliminating discrimination and unequal treatment based on disability. Today, NCIL is a strong voice for independent living in our nation's capital. With your participation, NCIL can deliver the message of independent living to even more people who are charged with the important responsibility of making laws and creating programs designed to assure equal rights for all. ABOUT ILRU The Independent Living Research Utilization (ILRU) Program was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the U.S. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at TIRR, conducting a comprehensive and coordinated set of research, training, and technical assistance projects focusing on leading issues facing the independent living field. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the U.S. and Canada. ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities. TIRR is part of TIRR Systems, a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. ABOUT THE IL NET The IL NET is a collaboration of the National Council on Independent Living (NCIL), the Independent Living Research Utilization (ILRU) Program, and organizations and individuals involved in independent living nationwide. Now entering its second three-year funding cycle, the IL NET is building on its strong foundation to address the spectrum of needs expressed by centers for independent living and statewide IL councils. The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field. IL NET goals include: conducting training on provisions of the Rehabilitation Act, implications for the upcoming reauthorization of the Act, and on independent living center operations nationwide; providing quality technical assistance through support and expansion of a network of individuals around the country who have expertise in various aspects of center operations and Title VII of the Rehab Act; identifying, adapting, and/or developing resource materials to support training and technical assistance activities related to the Rehab Act, center operations, and resource development; using computer networks to support training, technical assistance, and dissemination activities and promoting network development and information sharing among centers and other organizations involved in independent living; exploring the use of distance learning and other innovative technologies in addressing the information, training, and technical assistance needs of the field; fostering inclusion in the independent living field of people from various cultural and disability groups and geographic areas through activities carried out with NCIL's Multicultural Committee and the Association of Programs for Rural Independent Living (APRIL); and designing curriculum and materials to support leadership development efforts that will carry the independent living movement into the future. IL NET STAFF The IL NET is managed by a directorate consisting of Anne-Marie Hughey of NCIL; June Isaacson Kailes, disability policy consultant; and Bob Michaels and Laurel Richards of ILRU. Principal responsibility for curriculum development and training is shared by Kailes and Michaels; logistical coordination by NCIL; materials development and technical assistance coordination by ILRU; and responsibility for information dissemination is shared between NCIL and ILRU. The IL NET also works very closely with individuals and organizations in the field, particularly Roland Sykes of DIMENET, in fostering more effective computerized networking among centers. In addition, individuals with expertise on Title VII of the Rehab Act and on center operations will be involved throughout training and technical assistance activities. IL NET training activities are also supported by research information, databases, and other resources that result from initiatives at the RTC on Independent Living Center Management at ILRU. TRAINING ACTIVITIES In 1994, RSA established a national training and technical assistance project to address specific needs of independent living centers and the newly-funded statewide IL councils. During the first year, the IL NETWORK, as it was first called, conducted training programs in each of the ten federal regions of the country as well as several efforts co-sponsored with other organizations such as regional RCEPs. In all, these programs were attended by nearly 1,200 people from CILs, SILCs, and consumer groups. Year one training activities focused largely on the amended Rehab Act and its implications for independent living centers and statewide independent living councils. Issues related to center operations and to use of DIMENET as a networking and technical assistance tool were covered as well. Year two training and technical assistance activities emphasized newly enacted compliance indicators for centers, critical issues related to statewide independent living councils and development of state IL plans, systems advocacy, computer networking, and a closer look at state-administered CILs in the seven "723" states. Most of these focal points were identified through training participants' input and technical assistance requests. In 1995, the IL NETWORK piloted several new and dynamic training methods--national teleconferences, customized training programs for SILCs, and three five-day training sessions designed to be both comprehensive and intensive. Hands-on training for use of DIMENET and other computer networks was also incorporated into training sessions to allow new and experienced users to receive in-person technical assistance. A total of more than 2,800 individuals attended IL NETWORK workshops and conferences during the project's second year. To build on training curricula developed during the first two years, project staff assessed participants' reactions to trainings and techniques received in 1994 and 1995, requests received for technical assistance, and priorities for future trainings as identified by centers and SILCs on the 704 Report. As a result, 1996 trainings addressed the need for more information about conducting effective systems advocacy, doing outreach to underserved populations, computer networking, developing better presentation skills, innovative management techniques, and systems for collecting and reporting center information (MIS). These topics were again presented in a variety of ways--through customized, one-on-one, distance learning, and traditional interactive styles--to nearly 3,000 people from around the country and U.S. territories. The 1997 training season will again feature programs conducted in various parts of the country, both as complete pieces and as components of collaborative regional trainings. There are also two planned national teleconferences. Training topics include leadership development, advocacy, marketing and resource development for centers, disability culture, diversity and outreach, SILC issues, and network building. TECHNICAL ASSISTANCE Requests for technical assistance, whether from center staff, board members, or others involved in independent activities, are handled through a single point of contact at ILRU. ILRU staff determines who among various partner organizations and individuals are the most qualified to respond to the request, then provides referral to one or more potential technical assistants who may be ILRU staff, NCIL staff or board members, or other members of the project's technical assistance network. In each project year, IL NET staff responded to over 10,000 telephone requests from the field. With the introduction of resources available through the Internet, and with growing use of e-mail by centers and individuals in the field, an increasing number of technical assistance requests have been received and provided electronically. In 1996, from May to December, there were 66 inquiries received through this medium. IL NET STAFF NCIL Anne-Marie Hughey Raymond Lin (703) 525-3406 (V), 525-3409 (TTY), 525-3407 (fax) ncil@tsbbs02.tnet.com ILRU Laurel Richards Bob Michaels (602) 961-0553 (V), 961-0533 (fax) Cynthia Dresden Dawn Heinsohn Laurie Gerken Redd (713) 520-0232 (V), 520-5136 (TTY), 520-5785 (fax) ilru@tsbbs02.tnet.com June Isaacson Kailes (310) 821-7080 (V), 827-0269 (fax) jkailes@tsbbs02.tnet.com jik@pacbell.net Roland Sykes (513) 237-8360 (V) rsykes@tsbbs02.tnet.com IL NET SUPPORT Support for both cycles of funding for this three-year training and technical assistance project has been provided in part by the Rehabilitation Services Administration of the U.S. Department of Education, with additional support provided by NCIL, ILRU, DIMENET and other project partners. SYSTEMS ADVOCACY BENEFITS AND LEARNING OBJECTIVES BENEFITS 1. Know what systems advocacy is . . . and is not. 2. Figure out whether you're spending enough time on systems advocacy. 3. Help oppressed people get a rights-bearing attitude. 4. Use anger to change systems. 5. Use power strategies to change systems. 6. Start recognizing and dealing with excuses. 7. Build a systems advocacy infrastructure. 8. Learn how to pay for systems advocacy. 9. Make a real difference! LEARNING OBJECTIVES 1. Understand the differences between systems, individual, and self advocacy. 2. Understand the differences between advocacy and public information or education. 3. Understand why systems advocacy is the most important component of a CIL. 4. Understand the importance of acknowledging and discussing oppression. 5. Understand different types of power. 6. Understand the components of a systems advocacy approach. 7. Understand how to integrate systems advocacy into a CIL. 8. Understand how to build coalitions. 9. Understand methods for financing systems advocacy. 10. Understand how to plan, monitor, and evaluate a systems advocacy effort. OVERHEADS: ADVOCACY DEFINITIONS Standard 4 Community Options Increase availability/improve quality of options. "Obtain a curb cut for people and they can cross the street. Teach them how to obtain their own curb cuts and they can travel the neighborhood, the city and the world!" June Isaacson Kailes, Disability Policy Consultant INDIVIDUAL Action on behalf of, for, & most importantly with (self-advocacy) an individual. SELF Advocating on one's own behalf. SYSTEMS Broad based change for large numbers of people. Advocacy Individual Self Systems ADVOCACY DEFINITIONS Advocacy: Action by an individual or group in support of a cause, ideal, or policy to effect change, advance a cause, or raise public awareness. Actions to achieve these goals may take the form of demonstrations, lobbying for legislative change, conducting educational activities, or organizing others. Types of advocacy include individual advocacy, self advocacy, and systems advocacy. Individual advocacy: Action on behalf of, for, and most importantly with, an individual. Focuses on providing training, information, referral, and intervention with individuals. An effective individual advocate seeks to help people develop knowledge and skills for effective future advocacy activities. Individual advocacy may include confronting unacceptable conditions that infringe upon daily living activities and opportunities, learning how to appeal a decision, or filing a formal complaint or law suit. Example: While riding the public bus, Mary missed her stop because the driver failed to call out her stop. Because of her low vision, Mary cannot utilize public buses unless the stops are called out. Mary was late to class because she missed her stop. The driver calling out some of the stops failed to mention hers. Since the stop where she got off was unfamiliar, it took quite a bit longer than anticipated to get to school. John, a student who is blind and has had similar experiences, helped her file a complaint with the transit district. Self-advocacy (personal advocacy): Addressing specific issues to achieve change in one's own life by advocating on one's own behalf. The goal is to protect personal rights and to secure access to services, entitlements, or rights. Being an effective self-advocate requires having or developing assertiveness skills, knowledge of rights, strategizing skills, and networking skills. Self-advocacy activities may include filing a complaint or a suit, obtaining curb cuts in your community, or requesting and getting an audio loop system installed in city council chambers. Example: While riding the public bus, John missed his stop because the driver failed to call out his stop. Because of his blindness, John cannot utilize public buses unless the stops are called out. John knew that he had a right to accessible transportation. John spoke to the driver as he got off the bus and then later wrote a letter to the transit district. Systems advocacy: Working to create change within a system, agency, jurisdiction, etc.; implementing broad-based strategies to increase availability and accessibility of services and resources; and creating equal opportunities for independent living for large numbers of people. Systems advocacy activities may include speaking out on policies, laws, benefits, and/or practices that affect many people with disabilities; community organizing; or making legislative contacts, lobbying, testimony, petitions, etc. Specific examples include ensuring one's jurisdiction has a responsive paratransit system and using courts to interpret and enforce laws and regulations. Example: John contacted the disability access coordinator at the local independent living center and learned that other people with disabilities had similar problems using the public transit system. It was clear that the problem was not simply with one driver but involved the transit district's policy and training of drivers. John wrote a letter to the city council and considered other strategies such as taking the transit district to small claims court for each incident. Public information and education: Providing the public with accurate information regarding disability and disability rights. Activities include: giving presentations; creating publications, brochures, newspaper articles, and letters to the editors; producing videos or films; and designing public service announcements. Example: As a result of John's contacting the city council, the transit district realized that they needed to train their drivers in making reasonable accommodations for riders with disabilities. John helped put together the training segment for riders with visual impairments. John also contacted the local independent living center and convinced them to do a column on accessible transit. Developed by June Isaacson Kailes. Transit examples adapted from Living Independently, July 1994, published by the Independent Living Resource Center of San Francisco, 70 Tenth Street, San Francisco, CA 94103, (415) 863-0581 (V) and 863-1367 (TTY). THE BOOTSTRAP SOLUTION "Independent living" isn't a movement. It's a bunch of agencies. "Independent living" is a catchword for a new type of institution, funded with too few dollars, but nevertheless--by the government--to provide a palette of services no other agency is providing our people. It's naive to think that underfunded, understaffed agencies, trying to provide services far beyond their meager budgets, can, on top of it all, organize for social change. Providing services saps one's strength. Agencies that provide services do not organize the people. But we continue to believe we can, and should, do both. Perhaps we've been sold a bill of goods. In our rush to be credible, we've all but forgotten the issue. Which is: Why are public programs not providing us the services they provide the rest of society? We have long since gotten beyond segregated programs for the blacks. Why can't we get beyond them for ourselves? Why are we still running house registries for disabled people? Why are we not spending that energy making city and county public housing departments provide that service? Maybe some enterprising gimps will want to run a ramp building program. Fine. We need them. But our social change organizations should not be running them. They should be changing society. So why are we not working to stir up public sentiment to change our communities' building codes--so all housing becomes accessible? Why are we not fomenting a movement? Because it is hard to do. The establishment encourages independent living's bastard mix of services and advocacy. It knows that as long as we struggle to do both, we can do nothing of great social significance. Trying to hold all the strings, we simply do not have the time to concentrate on real social change. As long as we try to provide services--something we can never do adequately, even though our approach may be philosophically sound--we will be targets for our own groups' dissatisfaction. When our meager staffs, with little training and less money, fail to meet the need of all our would-be clients, the clients fight the centers. Great. Disabled people against disabled people. It's the old trick: to keep 'em disorganized and powerless, get them to fight themselves. Creating one's own parallel institutions to obtain what the oppressor society fails to provide: that solution has lured many oppressed groups throughout our country's history. And now independent living agencies have bought the bootstrap solution. It is the only solution that the rehabilitation establishment has ever understood. Little wonder independent living centers, now rehab's stepchildren, are buying into it, too. It's the ol' individual solution, putting the problem on the disability--rather than four square on the society, where it belongs. The rehab approach has no idea how to deal with attendant care problems, housing problems, transportation problems or employment problems, which are by nature, social problems, requiring social change to solve them. Organizations like ADAPT and the Access Institute are far better designed to deal with such things than the average client-centered (rather than group centered) independent living center, which must provide "services" or lose its funding. It seems we still accept the belief that special services to disabled people from special agencies are OK--maybe because now we are that special agency. As Disability Rights Education and Defense Fund head Bob Funk points out, we are not creating the organizations so essential to any movement's vitality. We have put most of our eggs in the independent living basket. Perhaps independent living was a necessary stage in the evolution of disability rights. But we must be aware of its limits. And we must move on. Editorial, originally published in the column "Ragtime" in Disability Rag, September 1985. Reprinted with permission. OVERHEADS: OPPRESSION TRANSITIONS People moving from: passive to active internalized anger to externalized anger identifying as oppressed To identifying as one who has: pride power rights EXPERIENCED OPPRESSION Many of our ancestors had to organize for change. Native Americans fought against military power of U.S. government. Irish immigrants organized secret unions (i.e., Molly McGuires) to fight for better working conditions in coal mines in Pennsylvania. Finnish immigrants organized union & cooperative associations. Jewish, Italian & Slavic immigrants organized early trade unions. OPPRESSION--THINGS THAT: devalue burden obstruct intimidate get in the way SOCIAL MOVEMENTS CONTRIBUTING TO DEVELOPMENT OF IL MOVEMENT Civil Rights Consumerism Self-help Demedicalization Deinstitutionalization OPPRESSION For many with disabilities, the overexposure and experience is: significant pervasive (less compartmentalized) always present whether in background or foreground has to be continually acknowledged, discussed and worked through June Isaacson Kailes, Disability Policy Consultant INTERNAL SCRIPTS How will I get there? What if there are no curb cuts? What if the podium is too high? What if they ask me questions I can't answer? I'd be up there all alone! I'm not polished enough! What if they don't understand me? What if they patronize me? ATTITUDES/STEREOTYPES society's values public policy environment "Evacuate the young, the fit and the useful first." (L.A. Times article heading) OPPRESSION TO ACTIVISM Society encourages people to consider environmental barriers as personal restrictions and obstacles rather than problems with public policy. SOCIETY'S STEREOTYPES Limited intellect Asexual Drag on society Angry Unemployable Medically fragile Childlike Dependent Burdens Erratic Undependable Deviant Uncontrollable Incompetent Diseased Not capable Biologically inferior Unfortunate cripples Victims Outcasts Menaces Subhuman Sick Deficient COMMON STEREOTYPES, MYTHS, & FEARS ABOUT DISABILITY Adversely affect feelings of self-worth & self image. Can be internalized, which contributes to self-hatred. People with disabilities, like society in general, are exposed to & often significantly influenced by negative stereotypes about disability. Affects development & maintenance of perceived self-worth & self-esteem for many people with disabilities. Telethons reinforce many of these negative stereotypes. Examine how disability-related stereotypes have influenced your self-image & feelings about your disability. See stereotypes for what they are--myths & misconceptions! Process helps people move beyond oppressive effects of stereotypes toward: anger action liberation If you thought of me as having a disability, I would be less than a regular person from your point of view. It is a negation of who I am which communicates: my disability is not a valuable part of who I am a denial of my reality equivalent to saying, "I never think of you as a woman, mom, Black, Hispanic!" ABLE-CENTRIC THINKING I'm a quad, not retarded. They treat me like I'm retarded. They act like we're crazy. They talk at me ve-ry clear-ly, like I'm deaf or something. I'm blind, not deaf. Lucy Gwin asks, "Are we just creating another unimproved, crip version of bigotry?" REJECTION OF SOCIETY'S DEVALUING DEFINITIONS A collective process of reinterpreting who we are. Uncovering & formulating sets of alternative values derived from within deaf & disability experience. We celebrate ourselves & take control of definition of our identity. Promote self-affirming slogans: Disabled and Proud Piss on Pity Deaf Pride Disability Cool "Individuals who critically examine & discard myths about people with disabilities view people in general with some different values. View physical characteristics as shallow, less important, superficial & easily changed by uncontrollable & common occurrences like aging & accidents. View people's personalities as most important. Devalue such treasured societal values & standards as looking youthful & physical perfection." June Isaacson Kailes, Disability Policy Consultant "It's no different for you and me. What's on the exterior has little to do with how successful we are. It's the spirit within us." Reverend Martin Luther King, Jr. OPPRESSION TO LIBERATION difficult process adopting a view of disability different than how society views disability acknowledging oppression leads to understanding of and embracing of a rights bearing attitude Takes: peer support role models time GETTING PEOPLE INVOLVED Understanding & acknowledging oppression can get people in touch with anger which can lead to involvement, action & liberation! People have to get angry. Sometimes have to agitate people to not accept the unacceptable! CLIENT, CONSUMER, CASE OR PEOPLE? QUASI-PROFESSIONAL LANGUAGE subjective and biased promotes distance sets up we/they & superior/inferior relationships VALUE-LADEN LANGUAGE IS deficiency-oriented subjective negative Able-ist stereotypes pigeon-holes Reduces sense of: self-worth power self-direction PROVIDER CLIENT/CONSUMER/INDIVIDUAL reside resident assertive aggressive rude, angry behavior problems don't like being told what to do noncompliant "All of us are partly what we think we are, and we think we are what we've been told we are." Si Kahn "When you're fed garbage all your life, you develop a taste for it." adapted from Hal Zukas SOCIETY'S STEREOTYPES Limited intellect Asexual Drag on society Angry Unemployable Medically fragile Childlike Dependent Burdens Erratic Undependable Uncontrollable Incompetent Diseased Not capable Biologically inferior Unfortunate cripples Victims Outcasts Menaces Subhuman Sick Deficient Deviant SOCIETY'S RESPONSE Stereotype Response Limited intellect Special education/segregated classes Drag on society Childlike Diseased Not capable Unemployable Vocational rehabilitation/sheltered Undependable workshops Incompetent Not capable Erratic Mental hospitals/institutions Childlike Medication/segregated housing/ Angry group homes Dependent Diseased Medically fragile Nursing homes/Medicaid/medical Dependent model Diseased Incompetent Not capable THE INDEPENDENT LIVING RESPONSE Society's Response Special education/segregated classes Vocational rehabilitation/sheltered workshops Mental hospitals/institutions/drug therapy Segregated housing/group homes Nursing homes/Medicaid/medical model IL Principles Consumer control Cross-disability Equal access WHEN STEREOTYPES BECOME LAW Example: Vocational Rehabilitation Stereotypes Process Outcome Unemployable Eligibility Paperwork Undependable Professional Incompetent Assess/evals Not capable Time-consuming IWRP "Cases" to be managed Education/training Dependent on counselor assessment of need/ability Job referral Dead-end jobs Low pay/no benefits Career support Low priority/budget-driven Counselors Advancement=Masters DISABILITY PRIDE: The Interrelationship of Self-Worth, Self-Empowerment, and Disability Culture TABLE OF CONTENTS EDITOR'S NOTE: A number of the exercises appearing in this section have been taken from the 1993 ILRU publication, Disability Pride: The Interrelationship of Self-Worth, Self-Empowerment, and Disability Culture. It was written by June Isaacson Kailes. The following is the table of contents from Disability Pride. The complete book is available from ILRU at an extraordinarily reasonable price. __________________________________________ INTRODUCTION GENERAL OVERVIEW TO 'DISABILITY PRIDE' SESSION I: The Role Disability Stereotypes Play in the Development of Self-Worth OVERVIEW EXERCISE 1: Identification of Stereotypes Associated with Disability Handout: "List Of Common Stereotypes" EXERCISE 2: How Have Disability Stereotypes Affected You? EXERCISE 3: What To Do About Disability Stereotypes? Handout: "What Is Your Role?" EXERCISE 4: Strengths That Result From Living with Disability EXERCISE 5: The 'Built Environment' Often Causes the Real EXERCISE 6: Self-Worth and the Role of Stereotypes SESSION II: Language as an Element of Disability Pride and Culture OVERVIEW EXERCISE 1: Value Laden Language EXERCISE 2: Language Issues Handout: Language Quiz Handout: Answers to Language Quiz EXERCISE 3: Subculture Language EXERCISE 4: What Should People with Disabilities Call Themselves? EXERCISE 5: The Importance of Language SESSION III: What is Disability Culture? Handout: "Language Is More Than A Trivial Concern" OVERVIEW EXERCISE 1: Cultural Experiences EXERCISE 2: Our Subculture Can Make A Difference Handout: "Our Subculture Can Make A Difference" EXERCISE 3: High School Reunion Example and Symbols of Disability Culture EXERCISE 4: Disability Cultural Experiences on Video EXERCISE 5: The Bargain Handout: "The Bargain" Handout: "The Bargain" Discussion Questions EXERCISE 6: Is There A Disability Culture? EXERCISE 7: Majority Cultural Goals Handout: "Majority Cultural Goals" EXERCISE 8: The Activist Leap Handout: "The Activist Leap" EXERCISE 9: Disability Pride and Culture Summary Handout: Disability Pride Inventory Handout: Disability Culture and Pride: True/False Quiz Handout: Disability Culture and Pride: True/False Quiz Answers Handout: Disability Pride Summary ABOUT THE AUTHOR ABOUT ILRU QUESTIONNAIRE "The alienation, loss of dignity, feelings of incompetence of lack of self-worth . . . that are common among powerless people can only be overcome by those people themselves." Mike Miller, Christianity and Crisis, 1981. EXERCISE Identification of Stereotypes Associated with Disability ESTIMATED TIME: 5-30 minutes FORMAT: Small groups of five people or large group discussion. HANDOUT: List of Common Stereotypes (Optional) ACTIVITY: Have group members identify stereotypes associated with disability, list each stereotype on a flip chart paper, and then discuss items listed. Mention a few stereotypes (see List of Common Stereotypes) if group(s) have difficulty getting started, or mention at end of exercise those stereotypes that may have not have listed. Examine common stereotypes about disability and consider how these may have influenced self-image and feelings about disability. NOTE TO THE FACILITATOR: Use the attached List of Common Stereotypes as needed. Also, incorporate into the discussion the following ideas: These misconceptions are commonly accepted by society and adversely affect the feeling of self-worth that many people with disabilities have. Many people with disabilities are deeply affected by how our society views and devalues disabilities. Some people with disabilities have internalized these views which can contribute to self-hatred. PURPOSE: Illustrates the pervasiveness of negative myths and stereotypes surrounding disability. List of Common Stereotypes (Optional) In spite of significant changes in the world of disability, negative stereotypes and myths still exist. In general, our society still views disability as something to be ashamed of and sees disability as something biologically unacceptable and unnatural. Society views people with disabilities as: --biologically inferior --unfortunate cripples --burdens --victims --outcasts --menaces --asexual --subhuman --fragile --sick: to be treated and cured or cared for! --needing charity and welfare: having little value to society (telethons have perpetuated several of these images.) --deficient: without skills and talents --deviant: behavior or appearance that is outside the social norm. What is considered deviant varies from culture to culture. Often the real deviancy is in the eye of the beholder. This flawed perception has been shaped by standards of acceptable behavior, cultural values, and the way these values are interpreted. EXERCISE How Have Disability Stereotypes Affected You? ESTIMATED TIME: For Activity A: 20-30 minutes For Activity B: 60-90 minutes FORMAT: Small groups of 3-5 people or large group discussion. HANDOUT: None ACTIVITY: Choose activity "A" or "B" or both. Activity A: Conduct a group discussion, addressing the following questions: Do the stereotypes listed in Exercise 1 sound familiar? How have they affected feelings about yourself? Which of these do you think are not true? Which of these do you think are still true? Which of these are you still not sure about? How do these stereotypes compare to other group stereotypes? Activity B: Invite one or more insightful and articulate speakers with disabilities to address the following: 1. How have disability stereotypes affected their self-concepts? 2. How did they move beyond these stereotypes in terms of their own sense of self-worth? 3. Did they ever deny their disability existed or try to pass as a person without a disability? Why? What was this experience like? 4. How did they come to acknowledge their disability? 5. How have people with disabilities (friends, role models, mentors and heroes) influenced their lives? Group questions and discussion should follow the speaker(s)' presentation. NOTE TO THE FACILITATOR: In this exercise's summary discussion, incorporate the ideas in the following statements. People with disabilities, like society in general, have been exposed to and often influenced by negative stereotypes about disability. This did, and still does, affect the development or maintenance of a strong sense of self-worth and self-esteem for many people with disabilities. This is why it is so important to take time to examine these stereotypes and to think about how they may have influenced your own self-image and your own feelings about your disability. It is important to see these stereotypes for what they are: stereotypes and misconceptions! This examination process helps people to move beyond the oppressive effects of these stereotypes. PURPOSE: Fosters new insights related to what contributed to the personal development of, or lack of, a sense of self-worth and self-pride. Assists individuals in exploring how they view their disability and what contributed to this view. Helps people to get in touch with negative messages they receive about their disability and examine where these messages came from. EXERCISE Media Messages This is an exercise for small groups. Materials: One old magazine per one or two participants. Objective: To illustrate the messages people get from print media related to health, beauty, dress, social appropriateness, appearance, and behavior. Activity: Distribute magazines. Ask each person or pair to tear out examples of images depicting specific ideas of health, beauty, behavior, etc. Discussion Points: 1. Advertisers create images about beauty, health, and dress that are not only unattainable and oppressive for people with disabilities, but for everybody. 2. Images presented in the media create a norm that very few, if any, people can achieve. 3. The media tends to burden and ignore, or even degrade, people who do not meet this artificially created "norm." Developed by June Isaacson Kailes, 1993. EXERCISE What to Do About Disability Stereotypes? ESTIMATED TIME: 30 minutes per activity FORMAT: Large group. HANDOUT: What is Your Role ? ACTIVITY: Choose activity "A" or "B" or both. Activity A: Conduct a discussion addressing the following question: What can people with disabilities do to change disability stereotypes? Activity B: Hand out What Is Your Role? and read aloud as a way of starting (or continuing) a discussion on what people can do to change disability stereotypes. PURPOSE: Illustrates that people with disabilities can play key roles in challenging and changing society's stereotypes about disability. That is working toward changing society's image of people with disabilities from passive, helpless, objects of charity to that of vital, powerful, valuable, and productive people. What Is Your Role? Society reinforces the erroneous concept that people with disabilities are inherently inferior to people without disabilities by attempting to restrict or confine people with disabilities to roles which are considered socially inferior, such as sick person, weak person, non-contributing person. Society often seems comfortable with us only when we stay where society would like to put us, in these socially less-than roles. To the extent that we resist this social stereotyping and prove our competency by filling socially valued roles like wage-earner, taxpayer, time and talent contributor (volunteer), non-institutionalized person, active family member, and concerned and involved citizen, among others, we invalidate negative stereotyping and force society to deal with us where we are, not where society would like us to stay. By getting out there and showing your stuff in spite of the negative input of society, you can improve not only your level of acceptance, but the acceptance and integration of all disabled people. Every time a stereotype is challenged, a crack appears in the walls that confine us. YOU can be an agent of societal attitude adjustment just by being who you are and doing what you do best, openly and publicly. --from: Megan Turner, "Taking Charge," Metamorphosis, newsletter of the Atlanta Center for Independent Living, 1990. EXERCISE Strengths That Result from Living with Disability ESTIMATED TIME: 20 minutes FORMAT: Large group. HANDOUT: None ACTIVITY: Conduct a group discussion, addressing the following: A. Certain Strengths: There are certain strengths that come from living with disability. What are these strengths? Possible answers: --creativity, resourcefulness --perseverance --acceptance of differences and diversity --ability to plan, to train, and to delegate --assertiveness --flexibility --resilience --humor B. Changed Values: Individuals who have critically examined and discarded myths about people with disabilities view people in general with a different value system. They tend to view people's personalities as what is important, and they tend to devalue such treasured but pathological societal values as looking youthful and having physical perfection. Physical characteristics are seen as less important, somewhat superficial, and easily changed by uncontrollable conditions like aging. As Reverend Martin Luther King, Jr. once said: "It's no different for you and me. What's on the exterior has little to do with how successful we are. It's the spirit within us." PURPOSE: Illustrates that there are strengths that one acquires as a result of living and coping with disability. Emphasizes that common stereotypes and oppression do not have to suppress one's drive, spirit, and energy. OH, MONA LISA, I NEVER THOUGHT OF YOU AS BEING DISABLED by William G. Stothers On my office wall hangs a poster of the Mona Lisa. This incredible, mysterious, smiling lady has intrigued admirers for centuries. Her portrait has long been regarded as an artwork of perfection. But this poster, a gift from a good friend, shows more. Leonardo da Vinci's painting shows Mona Lisa from slightly above her head to waist level, her folded arms resting across the bottom on the picture. This poster pulls back, showing more. Mona Lisa is sitting in a wheelchair. Her folded arm lies along the chair's armrest. The bottom of the poster shows more of the wheelchair, one of those old-fashioned designs with the big wheel in front, although this one is constructed of metal and not wicker. The poster is entitled, Nobody is perfect. So how do we think about Mona Lisa now? Does her flashing chrome impair our appreciation of her wondrous smile? Does this poster say that Mona Lisa is perfect, but that in a wheelchair, as a person with a disability, she is not perfect? Disability therefore makes one less than perfect. Perhaps the poster suggests that Mona Lisa is Mona Lisa, whether disabled and in a wheelchair or not. Perfection is too heavy a burden for anyone, even Mona Lisa. What I like about this poster is the unsettling effect it produces in the viewer. I never thought of you as disabled. Mona Lisa doesn't fit our idea of disability. It is too difficult to frame her with our stereotypes. I've had people tell me they didn't think of me as being disabled. I always resent it, because the statement denies my reality. Disability is a large part of my life, it shapes who I am. To separate me from it, to deny my disability, is to deny me. A friend says that such people mean only that they don't think of me in the way that they think about "disabled people." Thus they can accept me on equal terms and still hold fast to stereotypical views of people with disabilities that I find repugnant. Whenever someone tells me they don't think of me as being disabled, I want to scream at them. Look at me! I want to shake them by the shoulders and make them see the truth. I am the man I am and I have a significant disability. It is okay. More important, millions of other people with disabilities are just the same as me, human beings with talents and troubles. Once in a while I try to talk people through this, but their eyes glaze over. Too often I just shake my head and keep my mouth shut. I never think of you as being disabled acknowledges the disability in a backhanded way. I never think of you as an African-American. But it makes it an individual matter and separates the person from his or her disability. In fact, while people often say they don't think of a disabled person as having a disability, the reality lurks in their minds. They might not want their son or daughter to marry you. (When I was in college many years ago, a non-disabled woman and I got seriously involved. I met her parents. They were wonderful. Later I learned they spoke well of me, but told their daughter, "He is very seriously disabled, isn't he.") They may not invite you to socialize with them. Such occasions can be awkward. Some people don't understand and might feel uncomfortable. The inclination to rant and scream is immense. But that would reinforce the myth of the angry, bitter cripple. Individuals can make a difference. But in numbers, I think, we can really make a lasting impact. You, and you, and you can struggle individually to change the perceptions and mindsets of non-disabled people in the workplace and elsewhere. When we are present in numbers, though, we have a greater chance to shatter myths. How do we get to that place? That's the great question for the disability community. We must organize ourselves. Like the historic labor organizing efforts of days gone by, we must spread across the land, finding people with disabilities, and bringing them into our community --one by one. Mounting such a campaign is no simple task. It takes commitment, personal involvement, and money. This is the road to empowerment. That road won't be smooth or easy. But, hey, now we've got Mona Lisa with us. Nobody is perfect, but each of us can do something. What will you do? William G. Stothers is editor of MAINSTREAM Magazine. Copyright 1994, MAINSTREAM Magazine, 2973 Beech St., San Diego, CA 92102. Reprinted with permission. EXERCISE The 'Environment' Often Causes the Real Disability ESTIMATED TIME: 15-20 minutes FORMAT: Large group. HANDOUT: None ACTIVITY: Conduct a group discussion, addressing the following: Many people with disabilities view their disability as problems with the environment rather than problems with their own body. It is the environment which frequently causes the real disability. Do you agree with this statement? If yes, give some examples to support this statement. NOTE TO THE FACILITATOR: In the closing discussion of this exercise, incorporate the ideas in the following statements: Disability does not have to be about self-hatred and self-blame. Often it is not the disability that limits activities as much as the barriers. The environment limits participation, productivity, integration, independence, and equality. If a person with a disability is offered a job that cannot be accepted because it is located on the second floor of a building without an elevator, the real problem is that there is no elevator. When a person cannot attend school or a training program because there are no ramps or curb cuts, no interpreters, no brailled or taped material, the real problem is that there is no physical and communication access to education. The real problem is often the environment! PURPOSE: Presents the environment as the real cause of disability instead of seeing disability only in terms of problems with one's body. EXERCISE The Activist Leap ESTIMATED TIME: 20-40 minutes FORMAT: Large or small group. HANDOUT: The Activist Leap ACTIVITY: Distribute the handout, read it aloud, and discuss its meaning. NOTE TO THE FACILITATOR: In the closing discussion of this exercise, you may want to incorporate the ideas in the following statements: It takes thought and analysis about disability stereotypes, societal values, oppression, pride, and rights to change one's thinking from an "oppressed, poor undeserving me" self-concept to a self-concept which incorporates the perception of civil rights owed you as a human being. In spite of individual differences in people's disabilities, people with disabilities have much in common with each other. Together, through joint efforts and coalition building, a lot of positive change can occur. Basically, it is a bold transition in consciousness from depression, anger, and rage to action, oppression and passivity to activism, from being apolitical to being political, and from apologizing about who you are to asking for and demanding rights and services. PURPOSE: Explores the concept that disability pride and culture contributes to "the leap," a concept that people with disabilities must understand before they can comfortably become involved in community advocacy. The Activist Leap That attitude--one of seeing the disability as personal, the problems as rather embarrassing, and the solutions as forbearance or suffering through, what the jargon would have as "adjusting to it"--is a very, very common one among persons with disabilities. It does take a leap of logic to comprehend that society has obligations to you, that the issues are ones of civil and human rights. It takes a further stretch of the imagination to realize that people with other kinds of disabilities do in fact have much in common with you, that together you can make common cause. These things are not intuitive. But that leap, that stretch must be taken before one becomes a community activist, before one expresses self-determination at the community level. --from: Frank G. Bowe, "Self Determination at the Community Level," from the National Conference on Self-Determination, Arlington, Virginia, January, 1989. A LITTLE HISTORY WORTH KNOWING In this century, democratically elected state legislatures have referred to people with disabilities as: "anti-social beings" (Pennsylvania) "unfit for companionship with other children" (Washington) a "blight on mankind" (Vermont) a "danger to the race" (Wisconsin) a "misfortune both to themselves and to the public" (Kansas) "required to be segregated from the world" (Indiana) a "defect...wounds our citizenry a thousand times more than any plague" (Utah) "do not have the right to liberties of normal people" (South Dakota) The United States Supreme Court upheld an opinion by Justice Oliver Wendell Holmes upholding the constitutionality of a Virginia law authorizing the involuntary sterilization of disabled persons and ratified the view of a person with a disability as a "menace." Holmes went on to say that people with disabilities "sap the strength of the state" and to avoid "being swamped with incompetence," he ruled, "It is better for our world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind." By Timothy M. Cook, adapted by June Kailes, 1995. THE ROLE OF INDEPENDENT LIVING CENTERS IN PROMOTING CIVIL RIGHTS FOR PERSONS WITH DISABILITIES In an ILRU project conducted during the past year to examine the roles and responsibilities of board members of independent living centers, we obtained information on the extent to which centers have an obligation to advocate for the civil rights of their constituencies--people with disabilities. This project on center boards took the form of structured telephone interviews, conducted separately, with the executive director and board president of six centers--a total of 12 interviews. The centers were chosen to represent different sizes, geographical regions, and urban/rural settings. A question on appropriate civil rights orientation for centers was included in each interview. We learned that these individuals who hold the most influential positions in centers believe unequivocally in the importance of centers advocating for civil rights. We were told repeatedly that one of the most important distinctions between centers and other agencies and benefit programs is this orientation to civil rights. While these individuals interviewed said that civil rights orientation should characterize everything that centers do, they expressed deep reservations about this actually being the case. Many believed that when substantial funding for service delivery became available to centers, some forgot that the primary mission of the independent living movement has been to lead the fight for the civil rights of persons with disabilities. They saw a tendency, if not in their own centers then in others, to approach service delivery in a manner similar to the approaches taken by public benefit programs with rigid and often demeaning eligibility requirements or by charity agencies designed the serve the "needy." They warn that centers need to be constantly on guard against drifting into such inappropriate approaches. They say that if you have people on your board and staff who are committed to "helping those less fortunate," then you are probably going to end up with a center that delivers a lot of services but appears to be very much like charity organizations that are in the business of helping the "needy." The people we spoke with want to see centers with board and staff members whose paramount commitment is to equal rights for all, because, they say, then you will have a center that is working hard to make changes in the community and sees itself as promoting equal access in all areas of living. The people whom we spoke with realize, however, that the civil rights orientation of the independent living movement is extremely subtle and can be easily overlooked in the day-to-day effort to deliver services. They see training as the solution: centers must develop ways to provide both new staff members and new board members with a firm grounding in the civil rights orientation of the independent living movement, and centers must make sure that ongoing training is provided to staff and board members so that they will be kept mindful of the reasons why centers are unique. Boards of independent living centers need to be constantly asking the question, "Are we in the business of making changes that lead to a better community, or are we in the business of counting units of service?" For those of you who would like a mini-refresher course on disability and civil rights, we recommend the following readings: In The Unexpected Minority: Handicapped Children in America, John Gliedman and William Roth talk about adults with disabilities beginning to address their problems from the perspective of civil rights rather than from more traditional perspectives; in Environmental Accessibility and Independent Living Outcomes: Directions for Disability Policy and Research, Gerben DeJong notes that the civil rights movement for racial minorities made us aware of how civil rights continue to be denied to persons with disabilities. Also: Although the Rehabilitation Act of 1973 is often referred to as the civil rights act for people with disabilities, current efforts underway to promote passage of the ADA remind us that there continues to be a long way to go in eliminating discrimination toward persons with disabilities in all aspects of living. In the Spring 1989 issue of the NCIL Newsletter, Bonnie O'Day points out that the ADA was introduced in Congress for the purpose of establishing a ". . . clear and comprehensive mandate for the elimination of discrimination against persons with disabilities. Originally published in ILRU INSIGHTS Vol. 7, Nos. 3 & 4, 1989, ISSN 9733-1953. OVERHEADS: POWER OPPRESSION ANGER POWER TRANSFORMING anger to action action to power power to systems change People need to learn to recognize anger as legitimate & to direct that anger. Anger is the fuel that makes change when it is focused! "Anger generates the spark which . . .lights the fire which . . .fuels the passion which . . .motivates the tapping of those hidden reserves of strength & energy . . .to Act!!" June Isaacson Kailes, Disability Policy Consultant POWERFUL "The fact that you're right usually has very little to do with whether or not you win. The question is--are you powerful? If you have the power, then you'll get something done." Si Kahn It's better to be respected than liked. When you speak up, you get respect & you get service & change! Bad cripples get things done. Good cripples are tokens. June Isaacson Kailes, Disability Policy Consultant TOKENS Are quiet, don't speak up ("quiet" is from the Greek word to be controlled). Don't ask questions. Never disagree. Are part of the group to fill a quota and are only seen as a classification (client, consumer, parent, CP, SCI, etc.) instead of an equal group participant. Are often ignored or not taken seriously Receive patronizing smiles that communicate, "yes, dear that's nice, now just be quiet." Are intimidated by other's credentials & degrees. Do not influence decision making process. Feel there may as well be an empty chair in their place. Don't recruit allies & discuss & develop strategies. Allow people to act as if they understand what you are saying when you know they do not. Are a part of a group that chooses to manage people instead of assisting people. Having an advisory versus a policy-making status. June Isaacson Kailes, Disability Policy Consultant "Revolutions begin when people who are defined as problems gain the power to redefine the problem." John McKnight STEREOTYPES People with disabilities, if you see: 1 = person needs help 2 = it's a race 3 = it's a party 4 = it's a protest 5 = it's a national movement 15 = it's a revolution VOTING POWER 1988: Dukakis vs. Bush Election Only Bush mentioned support for ADA and promised "to bring 43 million disabled Americans into the economic mainstream." Harris poll showed a 33% shift in disability vote to Bush. 1992: Clinton vs. Bush Election Clinton won over voters with disabilities who voted for Bush in '88. Both candidates had papers on disability issues and promised strong ADA enforcement. Late in the campaign, Bush backed away from visible support of disability civil rights. Analysts believe the Democratic party also involved more people with disabilities in campaign: in process and in development of content of issues which contributed to strong Clinton disability vote. OVERHEADS: DISCOVERING THE LEADERS AMONG US NATIVE LEADERSHIP "Those persons whom the local people define and look up to as leaders." Saul D. Alinsky Organizations are vehicles for development, and an organization's leadership is at the steering wheel. ". . . significant community development only takes place when local community people are committed to investing themselves and their resources . . . That's why you can't develop communities from the top down . . ." John L. McKnight and John Kretzman "There is nothing in our past or present experience which suggests that we outsiders can effectively organize . . . a community to which we do not now and never have belonged." Gardner H. Shaw "One of the most important tasks of the organizer, in addition to identifying these natural leaders and working with them, is working for their actual development . . ." Saul D. Alinsky OVERHEADS: INFRASTRUCTURE TOP "EXCUSES" FOR NOT DOING ADVOCACY Lack of leadership. Not in the plan. Too busy providing services/no time. Don't know how/too hard. Not allowed to lobby. Funding sources won't allow. OVERHEADS: LEADERSHIP A RENEWAL SPIRIT "An orientation to independent living philosophy & practice is not something we just hear, experience and integrate once. It is a philosophy we in the movement keep reviewing, discussing & refining to enhance, focus and deepen our levels of understanding & practice. And we need to keep doing this over and over again!" June Isaacson Kailes, Disability Policy Consultant ADAPT SCENARIO A leader from ADAPT calls to let you know that ADAPT will be in town and is planning to picket the Nursing Home Association of America (NHAA), which has its national headquarters in your city. ADAPT invites your center to participate, but your board of directors says to stay away from the action. On their first evening in town, a reporter calls to get your opinion regarding their activities. It seems ADAPT has already taken over the headquarters. What do you say to the reporter? MANAGING THINGS AND LEADING PEOPLE by Jim Clemmer "Too many managers treat "their people" as assets with skin wrapped around them." High-performing teams and organizations balance the discipline of systems, processes, and technology management on a base of effective people leadership. Here are some key of the key distinctions between the two: The Management-Leadership Balance Management Leadership Systems, processes, and technology People - context and culture Goals, standards, and measurements Preferred future, principles, and purpose Control Commitment Strategic planning Strategic opportunism A way of doing A way of being Directing Serving Responding and reacting Initiating and originating Continuous improvement of what Is Innovative breakthroughs to what could be Both management and leadership skills are needed at the organizational, team, and personal levels. It's not a case of either/or, but and/also. Futurist, Joel Barker provides another helpful distinction between the two roles; "managers manage within paradigms, leaders lead between paradigms". Both are needed. Trying to run an organization with only leadership or management is like trying to cut a page with half a pair of scissors. Leadership and management are a matched set; are both needed to be effective. Systems and processes (management) for example, are critical to success. You and your organization can be using the latest technologies and be highly focused on customers and those serving them (leadership), but if the methods and approaches you're using to structure and organize your work is weak, your performance will suffer badly. People in your organization can be "empowered," energized, and enlightened; but if your systems, processes, and technologies don't enable them to perform well, they won't. Developing the discipline and using the most effective tools and techniques of personal and organization systems and processes is a critical element of high performance. But as the sweeping movement to teams, "empowerment" and involvement intensifies, many more daily management tasks are moving to the front lines where they belong. So leadership becomes even more critical. Unfortunately, many people in so-called leadership positions aren't leaders. They're managers, bureaucrats, technocrats, bosses, administrators, department heads, and the like; but they aren't leaders. On the other hand, some people in individual contributor roles are powerful leaders. Leadership is an action, not a position. A leader doesn't just react and respond, but rather takes the initiative and generates action. A leader doesn't say "something should be done," but ensures something is done. An effective leader is a "people person." Effective leaders connect, stay in contact with, and are highly visible to everyone on their team and in their organization. Leaders have developed the skills of supercharging logic, data, and analysis with emotion, pride, and the will to win. Their passion and enthusiasm for the team or organization's vision and purpose is highly contagious. They fire the imaginations, develop the capabilities, and build the confidence of people to "go for it." Leaders help people believe the impossible is possible, which makes it highly probable. Do you like to be managed or led ? You're not alone. Very few people want to work for a manager. Most of us would much rather be led by a leader. To manage is to control, handle, or manipulate. To lead is to guide, influence, or persuade. You manage things--systems, processes, and technology. You lead people. The roots of the rampant morale, energy, and performance problems found in many organizations are Technomanagers who treat people as "human resources" to be managed. If you want to manage someone, manage yourself. Once you master that, you'll be a much more effective leaders of others. __________________________________________ Excerpted from Jim Clemmer's latest book Pathways to Performance: A Guide to Transforming Yourself, Your Team, and Your Organization (Macmillan Canada and Prima Publishing, Rocklin CA). Jim Clemmer is an international keynote speaker, workshop leader, author, and president of The CLEMMER Group, a North American network of personal, team, and organization improvement experts based in Kitchener, Ontario, Canada. His website can be found at "http://www.clemmer-group.com/." This excerpt was obtained electronically and is reprinted with permission. CREATING LEADERSHIP ENERGY IS AN INSIDE JOB by Jim Clemmer You can't impassion others about their work unless and until you're impassioned about yours. Creating leadership energy is an inside job. The spark that ignites the leadership energy you bring to your team or organization comes from within you. But you can't give energy if you don't have it. And it's hard to fake what you don't feel. That will cause you to resent your job and eventually the people associated with it. It also sends everyone's increasingly sensitive "Phony Meters" over the red line. All of this drains even more of your energy and makes your work truly work. Have You Got Work, or Has Your Work Got You? If you're going to be an effective energy leader, then your work can't be work. You need a job that isn't a job, it's a joy. When you love what you're doing, you never have to go to work again. If I didn't love the personal and organization improvement field, I wouldn't study, note, and file hundreds of books and magazines each year. I won't produce the dozens of columns and articles I've written. If it were truly work, you couldn't pay me enough to disrupt our family life and invest the huge amount of time and fussy detailed work involved in writing books. If I didn't love designing and delivering improvement workshops or speaking at meetings and conventions, traveling to, and standing in front of, yet another group would be true drudgery. I am often asked how I develop the discipline to research, prepare, write etc. What discipline? That's assuming I have to force myself to do this work. On the contrary, my problem is disciplining myself to not let my work completely take over my life. That's because my work is highly aligned with my life purpose, vision, and values. So I am not working today, I am using this day to move one step closer to fulfilling a major part of why I exist. You need to either find the work you love, or learn to love the work you have. Get passionate or get out. This is where many "wanna-be leaders" succumb to the Victimitis Virus. "How can I do my life work when I am working flat out just to pay the bills now?", they sniffle. Well, if you're current job isn't energizing you so you can energize and lead others, you have four choices; 1) do nothing but wish for your fairy job mother to magically appear and straighten out your life; 2) get out of management so you stop dragging others down to your low energy level; 3) figure out what your personal vision, values, and purpose are and transform your current job into your life work; 4) figure out what your ideal job is and go find or create it. The good news is you can find or create your ideal job. The bad news is, if you haven't done much thinking in this area already, it takes a lot of hard, agonizing work to figure out where you want to go and why. Then the real time consuming and most difficult effort is transforming yourself into that person, developing the skills you need, capitalizing on and creating your opportunities to move forward. Excerpted from Jim Clemmer's latest book Pathways to Performance: A Guide to Transforming Yourself, Your Team, and Your Organization (Macmillan Canada and Prima Publishing, Rocklin CA). Jim Clemmer is an international keynote speaker, workshop leader, author, and president of The CLEMMER Group, a North American network of personal, team, and organization improvement experts based in Kitchener, Ontario, Canada. His website can be found at "http://www.clemmer-group.com/." This excerpt was obtained electronically and is reprinted with permission. OVERHEADS: PLANNING "A goal is a dream with a deadline." Anonymous ADVOCACY PLANS clear about how much work involved flexible to respond to change detail establishment & maintenance of networks & coalitions includes budget SELECTING MAJOR ADVOCACY ISSUES Is there an annual process for selecting or reconfirming issues with big payoffs? include goals & activities (clearly stated objectives, realistic desired outcomes) payoffs & time issues are realistically projected How is community, board, staff involved? How many advocacy issues can center effectively take a leadership role? Will stick with issue over many years? COMMUNITY INPUT Does Center take on what thinks issues are or what most comfortable with? What constitutes representative input from the community? Are needs assessments based on consumer's view of what's wrong with system versus consumer needs? Should issues be local, regional, state or federal, or a mix? OUTCOMES, SUCCESSES Monitor progress toward goals (frequently discuss & revise strategies). Prioritize & monitor quality of networking & coalition building. Evaluate impact: Are things happening? Are they outcome-oriented? Are they making a difference? CROP-UP ISSUES Need for action/decision filter questions: Is issue related to an already existing center systems advocacy goal? How will issue affect people with disabilities? How many people are affected? Who else is working on issues? are they able to deal with issue? is view compatible with IL values? do they need major or secondary assistance? How much time involved? Who will take responsibility for coordinating and monitoring? ISSUES focused and narrow measurable tangible, you can touch it To partialize the problem, it is important to find little issues within big issues. CONTINUOUS IMPROVEMENT plan do check act CELEBRATE SUCCESS Insure successes are widely disseminated. Excitement should be part of the process. make biggest deal about every success celebrate, build pride & confidence Thank & recognize people/awards. BOILERPLATE LETTER TO ELECTED REPRESENTATIVES This may be a helpful contact letter for you to consider modifying and using after any local- city, county, state or federal election. January 2, 1997 Dear_____, Congratulations on your recent election (re-election)....We at the XYZ Independent Living Center look forward to (continuing to work) working with you and your colleagues. Attached is information (updated information) on our independent living center and the services we offer to your constituents. As you embark upon your term of office, please utilize XYZ Independent Living Center as a resource for technical assistance and expertise on disability-related public policy and funding issues. Also, please feel free to call upon us for: consultation related to disability-related policy and long term care issues; assistance to ensure that your district office is accessible to all people with disabilities; and assistance to constituents with disability-related problems. We wish you success in meeting the challenges of your office. We know you are busy getting established in your new office, but when things settle down we would like you to come and visit our center. (OR) We'd like to invite you to revisit our center so we can update you on our many new accomplishments, programmatic changes, and advocacy and public policy priorities. We look forward to hearing from you. Again, best of luck. Sincerely, June Isaacson Kailes Executive Director Enclosures OVERHEADS: SERVICES REJECTION OF THE MEDICAL MODEL If anything needed to "get better," it was society! It was not the doctor who should be in charge! People with disabilities were consumers, not patients! People with disabilities need to "select" rather than "settle." They found they could get services needed but attitudes toward them were not changing. They had to change community's attitudes & reactions, including service systems governed by those attitudes. Systems change does not mean that ILCs offer the services people need in order to live independently. It means fundamentally challenging the system so that the system does what needs to be done. RETURNING TO THE FIVE P'S It's back to independent living being about: passion pride power political action pissing on pity June Isaacson Kailes, Disability Policy Consultant "ILCs should become the Movement's recruitment vehicle and bootcamp! We are just one group of warriors in a very long battle. . . We must have reinforcements!" June Isaacson Kailes, Disability Policy Consultant BEING NICE IS NOT THE GOAL! Centers were not meant to fit in the social service mainstream as an agency, but to be an agent of change! Not just about: public & community education disability sensitivity & diversity training But about pursuing: systems change having a plan monitoring & reviewing that plan June Isaacson Kailes, Disability Policy Consultant "In many cases if we don't change the system, direct services only put BANDAIDS on the problem. And they often don't even stick that well!" June Isaacson Kailes, Disability Policy Consultant The disability rights movement rejects the idea that you are broken and need to be fixed. Direct services are for fixing broken people. Community education and advocacy are for fixing the things that break people! adapted from "Getting There" by Ken Dibble Access Ability newsletter Southern Tier Independence Center Binghamton, NY Summer '92 ADVOCACY FOCUS--CONQUERING THE SERVICE TRAP Increase empowerment, self-esteem, & options breaks dependency on centers by people who want centers to "do it all" taking action is full of hope creates ripple effect in community Economy of effort impacts larger number of people long term significant benefit grant compliance for numbers - many more Course correction back to where centers should be. ADVOCACY QUESTIONS FOR ILCS TO CONSIDER Is an ILC better off with three full-time advocates rather than 30 people doing advocacy only some of the time? What is litmus test regarding what services an ILC needs to offer? OVERHEADS: TRAINING KINDS OF INVOLVEMENT Legislative Policy change Legal Demonstrations LEGISLATIVE NOTEBOOK Roster Committees Departments District maps Bill process Budget process Commissions Coalitions/alert systems CYBER SAVVY ORGANIZING Automated phone systems E-mail & mailbots Newsgroups Listservs Petitions Maintaining database Testifying via video teleconferencing YOU CAN'T ROCK THE BOAT WHEN YOU'RE RIDING IN IT. TRAINING RESOURCES Libraries Legislature Utilities United Way Chamber of Commerce Trade associations Unions University Political parties National organizations Special interest groups OVERHEADS: FUNDING SYSTEMS ADVOCACY Title VII, Part B Title VII, Part C DD planning council Grants Foundations Non-secular organization Tech Act TELEPHONE ALERT SYSTEM What is a telephone alert? The telephone alert is a method of getting critical information about an issue to advocates in order to let decision makers know how advocates feel about the issue. When does a telephone alert work? A telephone alert is most effective when issues are so time sensitive that a mail alert would not allow sufficient time to take action. When used effectively, the telephone alert will also yield a larger number of responses from grassroots advocates, consumers, and others in the community. When doesn't a telephone alert work? Telephone alerts are not as effective when an issue is too complex to be addressed in a brief, concise message or when the number of decision makers to be contacted requires a large commitment of the advocate's time. How does a telephone alert system work? You create a telephone alert tree. Leaders identify issues, prepare the alert message, and put the alert into motion by calling the next person in line. Members of the alert system receive the message, write it down precisely, and then pass it on to the next member in line. The last person in line calls the leader who initiated the alert and passes the message back precisely as it was received, closing the loop. After each member passes the alert along, he or she calls the decision maker with the alert message. What can I do to make sure my telephone alert system will work? Follow these few simple rules: Always make the message concise and to the point. Make sure the information is correct (title, name, phone number, bill number, etc.) Update the alert member information frequently on a dated form and remind members to throw away old copies. Make sure all members of the tree have back-ups. If the alert tree member (or the back-up) isn't available, leave your phone number and call the next person in line. Give alerts high priority! SAMPLE TELEPHONE ALERT FORM Date Time Received Caller's name For more information, contact Action required Call_______________ Letter______________ Other_______________ Deadline __________________ Issue: Contact information (name, title, phone number, address): Message (verbatim): Person returning report: Comments: TELEPHONE TREE LEGISLATIVE ADVOCACY PRE-TEST 1. There are three branches of the federal government. They are: a) House, Senate, and Congress b) President, Vice President, Secretary c) executive, legislative, judicial d) Mo, Larry, and Curley 2. Congress is made up of: a) the President and his cabinet b) the House of Representatives and the Senate c) the House of Representatives d) Democrats and Republicans 3. How many Senators are there in the U.S. Senate? a) one per state or 50 b) two per state or 100 c) 535 d) too many 4. What is the total number of representatives in the U.S. House of Representatives? a) five per state or 250 b) one for every 350,000 persons or 715 representatives c) not more than 435 d) three 5. "Gerrymandering" is: a) dividing an election district to cluster groups of voters to some advantage b) the first step in impeachment c) a Gaelic term used to describe persons who do not vote d) a tribute to Jerry Mathers for the work he did on "Leave It to Beaver" 6. The President is elected "at large." This means that the President is: a) overweight b) limited to two terms c) missing d) elected by members of the Senate e) chosen through a nationwide election 7. Representatives' and Senators' term lengths are: a) two years for both Senators and Representatives b) six years for Senators and four years for Representatives c) two years for Representatives and six years for Senators d) four years for Representatives and Senators e) five to ten years, with time off for good behavior 8. The Speaker of the House: a) is the leader of the majority party b) is, by tradition, the only person who may use a microphone in the House c) must be named after a lizard d) may never debate an issue or vote 9. The President of the Senate: a) is the leader of the majority party b) must give a brief presentation on each piece of legislation c) is always the Vice President or his/her designee d) lives in the Naval Observatory 10. "Sunshine Laws" are: a) laws which require open legislative meetings b) laws which are introduced during the spring session c) laws which deal with environmental issues d) laws which require review by the Ethics Committee 11. A "Joint Resolution" is: a) when an amendment is proposed to the Constitution requiring action by both Houses of Congress b) anti-marijuana legislation passed in 1968 c) an agreement signed by the leaders of the House and Senate at the beginning of each session d) a bill which is passed by both the House and the Senate and sent to the President for action 12. A "Conference Committee" is: a) a meeting of Senators or Representatives which is not held in Washington b) a private meeting between Senate and House leadership c) an honorary committee which arranges tours, junkets, etc. d) an appointed committee of House and Senate members who will meet to resolve differences between two similar pieces of legislation 13. A "Constitutional Majority" is: a) a committee dominated by either Democrats or Republicans b) always the House of Representatives c) 218 members of the House and 51 members of the Senate d) in the United States' case, white males 14. "Germaneness" of debate means that: a) speakers in the House and Senate must make short, succinct presentations b) the debate must be relevant to the matter under consideration c) only persons of German ancestry may speak d) nobody may speak for more than three hours POLITICAL CONTACT REPORT FORM Date of visit___________ Elected official_______________________________________ Prese nt? Yes____ No____ Staff name(s) _____________________________ Phone ______________________________ _____________________________ Phone ______________________________ U.S. Representative___________ U.S. Senate___________ City Council____________ State Assembly_______________ State Senate__________ Supervisor______________ Other_______________________ District ________________________________________________________ ______________ Reason for visit/contact: Outcome of visit/contact: Follow-up: Other information/comments: Staff/volunteer 8 TIPS FOR COMMUNICATING WITH PUBLIC OFFICIALS 1. Set appointments--and keep them. This is the first step in demonstrating respect and professionalism. Not only that, it's simply good manners. Call as far ahead as possible to set your appointment. The further ahead, the more likely it is that you will get enough time to fully share your ideas. 2. Prepare your presentation. Know what you're going to say and who is going to say it. Practice how you will make critical points and how you will respond to tough questions. 3. Establish common ground. One of the best ways to build rapport is to establish what you have in common. It's there if you look for it. A family member. . . a bill she sponsored last year. . .a relevant speech he gave in your community. . . a hearing you testified for. Your job is much easier if you, or one of your party, is a constituent. 4. Show why you are the expert. Share information about yourself, members of your party, and your organization that qualifies you as expert(s) in the matter under discussion. 5. Identify decision points. Be clear and concise in your request, but avoid appearing rigid and uncompromising. What exactly is it that you want? What is it about the principles of both your organization and the public official that make your points so important? 6. Consider friends and adversaries. Identify other groups or organizations that would support or oppose your position. Why are they right or wrong? Is there a possibility for a win-win solution to the discussion? 7. Offer assistance. Offer your assistance if there is something you can do to help clarify or strengthen your position--and then do it! Don't make promises or commitments that you don't intend to follow through on. 8. Show appreciation. Send a follow-up letter thanking the public official for the meeting and briefly clarifying the major points discussed. If you met with a staff member, be sure to send a complimentary note to his or her boss. ORGANIZING STRATEGIES SKIT ONE ' Do-Gooder Dave's Dilemma' This skit requires two actors to play the following roles: Do-Gooder Dave, the social worker/advocate employed by the local center for independent living. Legislative Linda, a legislative aide to Sen. Stone, chair of the Public Welfare Committee in the state Senate. Setting: Dave has just entered Linda's office in the rear of Sen. Stone's suite. He had received a phone call at home from his center director asking him to go directly to the Senate to investigate a rumor that state personal assistance services funds are being re-directed to nursing facilities' budget. He is fortunate to have secured some of Linda's time this morning because the Public Welfare Committee is scheduled to meet in the afternoon. Sen. Stone has a reputation for supporting disability issues from an independent living perspective, but Dave has had only had one previous contact with Linda during the previous legislative session when a parking accessibility law was passing through the Senate. The directions Dave received from his center director were to find out as much as he could about the bill so that they could begin to develop a strategy for legislative action by the CILs in the state. Linda: Good morning. How can I help you? Dave: Let me get right to the point. I'm from a center for independent living, and we just heard a rumor that the Senate is considering diverting personal assistance services funds to nursing home care. Linda: You must be talking about Senate Bill 2001, sponsored by Sen. Foghorn. It was just assigned to the Public Welfare Committee last week by the majority leader, and we expect to be taking it up in committee next month. Do you have any feelings about it? Dave: Well, of course, we're very concerned. We already have a waiting list of over 200 persons in this state for personal assistance services, and the thought of taking funds out of the personal assistance pot is very frightening--not to mention that we strongly oppose funding "nursing care" institutions. Linda: Well, these are tough times. Our waiting list for nursing homes is also growing, and the money has to come from somewhere. Everyone always thinks it's somebody else's ox that needs to be gored. Dave: Well, I trust that you would take a look at the cost-effectiveness of placing persons in nursing homes versus providing funding to support personal assistance services. We think that personal assistance services make good sense. . . . and are cost-effective. Linda: Who's "we?" Dave: Centers for independent living--especially our consumers. Linda: We have organizations asking us to support the nursing facilities, of course. Some of them, like your organization, are service providers and others are consumer groups. If you want to participate in the debate, you need to have your organization develop something in writing, so I can share it with committee members. Dave: You'd do that? Linda: We could arrange for you to make a presentation at a Senate hearing, as well. Dave: Really? That's great! I'll make certain I take that information back to our center director, and we'll get right on it. You'll be sure to hear from us! Linda: Well, thank you for your input. ORGANIZING STRATEGIES SKIT TWO ' Advocate Dave' The setting is exactly the same, except that Dave has called ahead and scheduled time to meet with Linda and has researched the background issues. Dave: Good morning. My name is Dave Drake. I work at the Liberty Independent Living Center here in Capitol City and am responsible for overseeing legislative issues which may affect persons with disabilities. You may recall that you and I spoke last year regarding parking accessibility while that legislation was passing through the Senate. Linda: Oh, yes. I knew I had met you before, but I couldn't remember the specific piece of legislation. What does your agency do? Dave: We provide assistance to persons with disabilities who want to live more independently in their communities. This includes programs like skills training, peer counseling, help in securing assistive technology, and anything else that makes it possible for someone live more independently in the community. We believe that it makes good sense for people to be active and involved in their communities rather than being forced to live in institutional settings. Linda: That's certainly something that Sen. Stone supports, as well. Dave: Yes, I know. He has always been a strong advocate for persons with disabilities, and we appreciate that. I was especially impressed with the work that he did on the original personal assistance services legislation. Linda: We're very proud of that, too. Dave: That's really why I'm coming to you today. I understand that a bill has been sent the Public Welfare Committee which will redirect some of the personal assistance services funds to support the nursing home program. Linda: Oh, yes. You must be talking about Senate Bill 2001, sponsored by Sen. Foghorn. The Senate majority leader has referred it to the Public Welfare Committee, and we expect to deal with the bill next month. Dave: Do you think it'll happen early in the month? Linda: Not actually. We think we'll have hearings in the third week and the vote to send it to the Senate floor just before the end of the month. Dave: Then you expect it to pass? Linda: I don't think it'll pass in its present form, but we're receiving a lot of pressure to support the nursing home program and the money has to come from somewhere. Dave: As you can image, the 1,500 consumers in the state who are currently in the personal assistance program will want to see the program continued. And, of course, the other 200 on the waiting list will be extremely disappointed because this means their wait will be even longer. One of the other considerations, of course, is that personal assistance services are considerably less expensive and keep people active and involved in their communities, rather than shut away--our consumers would say incarcerated--in institutions. Linda: Well, everybody believes that their projects should be untouchable. We're getting a lot of pressure from different directions to support this program. Dave: Who would be in favor of Senate Bill 2001? Linda: Well, for a start, you would have the Nursing Home Association, the Action AIDS group, and several local chapters of the AARP. Dave: Is that right? I would think that the AIDS advocates and AARP would be in favor of developing home-based alternatives. Linda: I was surprised too. In fact, we've already been contacted by the lobbyist from the area Agencies on Aging, and Lacey Davenport of the Gray Panthers, both of whom are actively working against the bill. Dave: What are the people at the state Departments of Aging and Developmental Disabilities saying? Linda: Well, actually, I believe they agree more with your position than Sen. Foghorn's, but they'll wait to see where the Governor is going to come down before they express any opinion publicly. You may want to talk to Benjamin Bureausmith in the Department on Aging. He has been gathering statistics which will support your position. Dave: Is there anybody else we can talk to so that we can become more acquainted with Senate Bill 2001 issues? Linda: I can't think of any, except that you may want to work with Sen. Crane, the ranking minority member of the committee. Remember, he represents Seniorville, and not only is that a retirement community, but it also has literally dozens of nursing facilities that will have their funding jeopardized unless some financial support is given to them. Dave: Well, thank you very much. I really appreciate your advice. We would like an opportunity to participate in the public hearings. Linda: I'd like that. In fact, I'll tell Sen. Stone that there are a number of persons and organizations concerned about this legislation, and we might be able to schedule some extra time to get grassroots input. Dave: Thank you very much. Here's my card. Please feel free to contact me at any time on this or any other matter. Linda: I'll be in touch. OVERHEADS: LOBBYING CILS AFFECTED BY LOBBYING LAWS Non-profit recipients of federal funds. Non-profit corporations. Employer/contractor of lobbyist. LOBBYING MANAGEMENT TABLE Authority Enforcement Recipients of federal funds Circular A-122 Granting/contracting agency Non-profit corporations Internal Revenue Code (P.L. 94-455) Internal Revenue Service Lobbyists Lobbying Disclosure Act of 1995 (P.L. 104-65) Secretary of the Senate/Clerk of the House DIRECT LOBBYING Any attempt to influence any legislation through communication with any member or employee of a legislative body, or with any government official or employee who may participate in the formulation of the legislation GRASSROOTS LOBBYING Any attempt to influence any legislation through an attempt to affect the opinions of the general public. LOBBYING CEILINGS P.L. 94-455 Total Allowable Lobbying Grassroots Budget Expenditures Lobbying Up to $500,000 20% of Budget 1/4 of Lobbying $ $500,000- $100,000 + 15% of $25,000 + 3.75% of $1 Million Excess over $500,000 Excess over $500,000 EXAMPLE THE "DISABILITY R US" CENTER FOR INDEPENDENT LIVING Total CIL Budget = $750,000 Total Lobbying Grassroots Lobbying Expenditure Allowed Expenditure Allowed $100,000 + 37,500 = $25,000 + $9,375 = $137,500 $34,375 501(C)(3) NON-PROFIT ORGANIZATION P.L. 94-455 Non-elect Elect Financial Standard: "Substantial" Clear Limits Activities: IRS Interprets Definite Rules Penalties: Loss of 501(C)(3) Status Fine THE LOBBYING TEST Identify whether or not the following activities would be defined as lobbying. LOBBYING 1. Communication with a legislator or public official. YES NO 2. Communication with a legislator or public official about personal assistance services. YES NO 3. Communication with a legislative aide about SB 144, The Personal Assistance Act of 1996. YES NO 4. A letter to a senator, encouraging her to reject a nominee for Secretary of Education. YES NO 5. Communication to members of your center encouraging them to contact legislators regarding specific legislation. YES NO 6. Putting a notice in the local newspaper expressing the view of your organization regarding specific legislation. YES NO 7. Inviting a legislator to your center to educate him about issues of importance to people with disabilities. YES NO 8. Publishing an objective analysis of your community's public transportation plan in your newsletter. YES NO 9. Contact with a legislator regarding legislation which will effectively terminate your organization. YES NO 10. Contact with a legislator regarding a 20% cut in funding for your organization. YES NO 11. Endorsing a candidate for office who has been consistently supportive of independent living. YES NO 12. Surveying all candidates for a particular office and publishing the results in your local newspaper. YES NO 13. Attending a public hearing regarding pending legislation which will affect your organization. YES NO 14. Testifying at a public hearing at the request of a legislative committee. YES NO LOBBYING 15. Sending an objective analysis of pending legislation to your members and five months later asking them to encourage legislators to vote against it. YES NO 16. Responding to a request for the state VR agency to encourage legislators to vote against a bill. YES NO 17. Providing transportation to the polls on election day. YES NO 18. Making postcards expressing support for pending legislation available on a table in the center's lobby. YES NO 19. Distributing a petition during skills training class that encourages your governor to look into housing needs in your state. YES NO 20. Putting a notice in the newspaper that your center is in favor of a referendum on the upcoming ballot. YES NO Lobbying Restrictions for Recipients of Federal Funds Not Federally Supportable Federal, state or local electioneering and support of such entities as campaign organizations and political action committees Most direct lobbying of Congress and state legislatures to influence legislation Lobbying of the executive branch in connection with decisions to sign or veto enrolled legislation Efforts to utilize state or local officials to lobby Congress or state legislatures Grassroots lobbying concerning either federal or state legislation Legislative liaison activities in support of unallowable lobbying activities Federally Supportable Lobbying at the local level Lobbying to influence state legislation, in order to reduce directly the cost of performing the grant or contract or to avoid impairing the organization's ability to do so Lobbying in the form of a technical or factual presentation to Congress or state legislatures, at their request Contacts with executive branch officials other than lobbying for the veto or signing of enrolled bills Lobbying on regulatory actions NOTE: Lobbying activities that cannot be supported by federal funds can be supported by other funds. Adapted by Bob Michaels from Circular A-122: Cost Principles for Non-Profit Organizations, an Office of Management and Budget policy directive and the legal basis by which heads of federal departments and agencies define allowable and unallowable costs in grants, contracts, and other agreements. With thanks to John Nelson, Independent Living Branch Chief, RSA and Sergio Kapfer, Department of Education General Attorney for their review. FREQUENTLY ASKED QUESTIONS ABOUT LOBBYING AND CILS " It's easy to tell if a center's doing strong advocacy. Someone from the state is telling them they're not allowed to lobby." --Ed Roberts ________________________________ _____________ The following are questions about lobbying which have been raised during our training programs, technical assistance calls, and consultant work. To answer these questions, research was conducted of pertinent regulations of the Internal Revenue Service and the Department of Education. We hope you find them useful. 1. Are centers for independent living (CILs) allowed to lobby? CILs may lobby, but the types of lobbying activities that are permissible vary, depending on whether they are supported with federal or non-federal funds. In addition, a CIL's lobbying activities may be further limited by Internal Revenue Service regulations applicable to nonprofit organizations. 2. What statutes or regulations do centers for independent living need to follow with regard to lobbying? The federal government requires granting and contracting agencies, such as the Department of Education, to follow guidelines set out in the Office of Management and Budget (OMB) Circular A-122 when awarding federal funds. Centers may elect to follow guidelines set out in regulations developed under the Internal Revenue Code, Sections 501(h) and 4911. Centers which employ lobbyists or direct considerable funds to lobbying activities must meet reporting requirements set out in the Lobbying Disclosure Act of 1995 (P.L. 104-65). While requirements contained in these three documents will be covered in the remainder of this FAQ, there may be other federal, state, or local laws or regulations which affect the lobbying activities of a center. Center staff should contact agencies in their states which regulate activities of nonprofits and request provisions related to lobbying activities. It is imperative that center staff have a thorough understanding of these laws and regulations whenever issues of compliance are raised--and always get a second opinion. 3. I have been told that centers which receive Title VII funds are restricted from lobbying. Is this true? CILs that receive Title VII funds are restricted from using those and other federal funds to engage in most lobbying activities. However, as stated in response to question one (1), CILs may use non-federal funds to engage in non-restricted lobbying activities. 4. What lobbying activities may not be supported with federal funds? Briefly, lobbying activities which cannot be supported with federal funds include: Federal, state, or local electioneering and support of such entities as campaign organizations and political action committees; Most direct lobbying of Congress and state legislatures to influence legislation; Lobbying of the executive branch in connection with decisions to sign or veto enrolled legislation; Efforts to utilize state or local officials to lobby congress or state legislatures; Grassroots lobbying concerning either federal or state legislation; and Legislative liaison activities in support of unallowable lobbying activities. It is important to note that activities that may not be supported by a center's federal funds may be supported by its nonfederal funds. 5. What lobbying activities may be supported with federal funds? Lobbying activities which can be supported with federal funds include: Lobbying at the local level; Lobbying to influence state legislation, in order to reduce directly the cost of performing the grant or contract or to avoid impairing the organization's ability to do so; Lobbying in the form of a technical or factual presentation to Congress or state legislatures, at their request; Contacts with executive branch officials other than lobbying for the veto or signing of enrolled bills, and Lobbying on regulatory actions or decisions by governmental entities, other than legislative bodies, including school boards, transportation commissions, and other administrative agencies. Attempting to influence judicial decisions. 6. Will we jeopardize our center's 501(c)(3) status if we lobby? There are really two questions which must be answered: Is the activity under consideration really lobbying and does lobbying constitute a "substantial" portion of what the center does, under IRS rules. Question One: Are the center's activities "lobbying" or something else? Direct lobbying is defined in the Internal Revenue Code (IRC) and regulations as "Any attempt to influence any legislation through communication with any member or employee of a legislative body, or with any government official or employee who may participate in the formulation of the legislation." This includes such obvious activities as contact with a legislator about a specific piece of legislation, advocating for increases in funding in the budget, opposing a candidate for appointive office, and encouraging the general public to support or reject an initiative, referendum, or board measure. Direct lobbying does not include activities such as educating decision makers about issues of importance to people with disabilities, administrative lobbying, surveying candidates for office, attending public hearings, or even testifying if requested by a legislative committee in writing. Nonpartisan analysis and self-defense lobbying also qualify as exceptions under IRS rules. A communication (with the general public or any segment thereof) will be treated as grass roots lobbying if, and only if, the communication (1) refers to specific legislation, (2) reflects a view on such legislation, and (3) encourages the recipient to take action with respect to such legislation (for instance, through a "call to action"). Question Two: Is lobbying a "substantial" part of what the center does? Centers can either elect to comply with IRC Section 501(h), which requires filing papers with the IRS and reporting annually on lobbying activities, or elect not to file under the law. Compliance with the law allows 501(c)(3) corporations to expend as much as 20 percent of their funds for lobbying activities depending on the size of the organization. Those choosing not to file may only spend an amount which is not substantial. One court ruled that devoting more than five percent of an organization's resources to lobbying activities was substantial. So, why doesn't everyone file under IRC 501(h)? Because most organizations haven't learned about it yet. The guidelines are far more generous and record keeping demands for day- to-day lobbying activities are virtually the same under both regimes. 7. How does lobbying differ from advocacy? In the regulations for Title VII of the Rehab Act, advocacy is defined as "pleading an individual's cause or speaking or writing in support of an individual. . . . Advocacy may be on behalf of a single individual . . . a group of class of individuals . . . or oneself." Note that in this context, "pleading" is a legal term meaning "a formal statement setting forth the defense of a case" (Random House Dictionary). Advocacy, then, is action taken to convince others of the rightness of your cause and of their need to join you in supporting this cause. Lobbying is a subset of advocacy in that it is a set of activities that plead a cause and set forth the defense of a case in order to influence the voting of legislators. In other words, lobbying is advocacy with a very narrow and specific focus--to convince legislators to vote as you wish them to on specific legislative proposals. Thus, the use of the word "advocacy" does not change the nature of what is or is not permitted as a lobbying activity. 8. Where can our center get more information about compliance with the Internal Revenue Code? You can always try the IRS itself, but most of its information is not written for people other than certified public accountants. One excellent source of information we've found has been written by Greg Colvin, an attorney who specializes in this area. You can contact Greg at Silk, Adler, and Colvin (415) 421-7555 (v) to inquire about resource materials he has developed regarding lobbying and the tax code. Other sources include Independent Sector (David Arons, 1828 L, N.W., 1200, Washington, D.C., 20036 (202) 223-8100), Alliance for Justice (Donna Eubin, 2000 P St., N.W., Suite 712, Washington, D.C. 20036, (202) 822-6070), and Chronicle of Philanthropy, (Derria Neal, 1255 23rd Street, N.W., Washington, D.C., (202) 466-1200). 9. How does the Lobbying Disclosure Act of 1995 affect centers? In most cases, it doesn't. The law requires that people who are hired to influence Congress or top federal executive branch officials are required to register as lobbyists, to report their areas of interest, and to specify the amount of money spent on lobbying activities. Lobbyists who spend 20 percent or more of their time attempting to influence these federal officials must register with the Clerk of the House and the Secretary of the Senate. Centers which pay less than $5,000 in a six-month period for the services of a lobbyist or spend less than $20,000 in a six- month period on lobbying-related activities are not required to register. 10. How may I obtain copies of the documents identified in this FAQ? The documents referred to in this FAQ are available through the Government Printing Office or from your auditor or congressman. In addition, many codes, regulations, and legislation can be downloaded electronically from the Internet. To access OMB Circular A-122 online, go directly to www.doleta.gov/regs/omb/a-122.html. For a copy of the Lobbying Disclosure Act of 1995 (P.L. 104-65), Act and other federal legislation, go to http://thomas.loc.gov, probably the best springboard into everything from public documents to the inner workings of Congress. To download the act directly, type in ftp://ftp.loc.gov/pub/thomas/c104/51060.enr.txt. To find the IRS online, point your browser to http://www.irs.ustreas.gov. The Alliance for Justice also maintains many valuable resources online at their website at http://www.afj.org. CONCLUSION Advocacy is a primary mission of centers. What, however, constitutes advocacy, and what distinguishes it from lobbying--a practice for which federal funds can not be used? This question is one of the most often heard by IL NET trainers and technical assistants, and it is an important issue for centers. If you are unsure or would like more information about the law, be sure to contact an attorney or your legislator. This fact sheet was prepared by Bob Michaels with assistance from Laurel Richards, Cynthia Dresden, and Dawn Heinsohn. We extend our appreciation to Greg Colvin, John Nelson of the Independent Living Branch, RSA, and Sergio Kapfer, Division of Educational Equity and Research for agreeing to review these responses. A PRACTICAL GUIDE TO THE IRS RULES ON LOBBYING BY CHARITIES by Gregory L. Colvin "What is the IRS definition of lobbying?" "How much lobbying are we allowed to do?" Sooner or later, every nonprofit organization involved in public policy issues, and concerned about maintaining its tax-exempt status under Section 501(c)(3) of the Internal Revenue Code, will ask these questions. Today, the answers to these questions are clearer and more permissive than ever before. On August 31, 1990, the Internal Revenue Service finalized its regulations on lobbying by Section 501(c)(3) organizations. The regulations, which are more than fifty pages long, bring to an end sixty years of uncertainty about how a charity[1] can safely engage in lobbying. To comprehend the current federal tax law on lobbying by charities, it is necessary to understand three overlapping stages of historical development: I. The No Substantial Part Test (1934-the present) II. The 501(h) Election Before the New Regulations (1976-1990) III. The 501(h) Election After the New Regulations (August 31, 1990) I. The No Substantial Part Test (1934-the present) Before 1930, federal tax law contained no limitation on lobbying by charities. In that year, Slee v. Commissioner of Internal Revenue[2] was decided, denying charitable tax-exempt status to the American Birth Control League because it disseminated materials to legislators and to the public, advocating repeal of laws preventing birth control. In the court's view, the League's lobbying purposes prevented it from being exclusively charitable, educational or scientific. Following the Slee decision, Congress in 1934 placed a limitation on lobbying in the basic definition of a Section 501(c)(3) organization, "no substantial part of the activities of which is carrying on propaganda, or otherwise attempting, to influence legislation." In the years since 1934, the reference to propaganda has become of lesser importance. Reworded a bit, the classic rule on lobbying became (and still is): A Section 501(c)(3) organization may attempt to influence legislation, but only as an insubstantial part of its activities.[3] This rule did make clear that only legislative lobbying was limited, not lobbying in general. A charity could, without any limitation, attempt to influence the actions of government officials, so long as it steered clear of legislative decisions. (Of course, the policy issue would have to be related to its exempt purposes.) So, for example, a charity could freely: * try to influence an administrative agency regarding its regulations and rulings * petition the President, or a governor or mayor, on executive decisions * attempt to influence legislators on nonlegislative matters, such as conducting investigative hearings or intervening with a government agency * engage in litigation to obtain favorable rulings from the judicial branch of government On the other hand, the definition of "substantial part" remained vague and unclear, despite several court decisions. In Seasongood v. Commissioner of Internal Revenue, spending less than five percent of the organization's time and effort on lobbying was considered to be insubstantial.[4] However, later decisions[5] cast doubt on the usefulness of a percentage test and stated that all the facts and circumstances of an organization's legislative and other activities would have to be examined. One court suggested that a single official position statement could be substantial, depending upon its impact on the legislative process.[6] With federal tax law in this condition, most charities and their legal advisers preferred to avoid legislative advocacy entirely. The IRS, with a few notable exceptions,[7] was reluctant to challenge a charity's lobbying because its only weapon was a severe one -- revocation of the charity's Section 501(c)(3) exemption. Then, in 1976, Congress stepped in to provide an alternative approach with more predictability for both the IRS and the charitable sector. II. The 501(h) Election Before the New Regulations (1976-1990) The Congressional solution, contained in the Tax Reform Act of 1976, has been variously known as the "Conable option", the "expenditure test" and the "501(h) election." In this guide, we will call it the 501(h) election. Congress did not change the classic 1934 requirement that lobbying must be insubstantial. However, the new law allowed some eligible charities, by filing IRS Form 5768, to avoid the vague "substantiality" test and to elect instead an "expenditure" test, limiting their lobbying to certain percentages of their budgets. The limits were set at 20% for all lobbying expenditures, one-quarter of which (i.e. 5%) could be grass roots lobbying. The percentages were scaled down for large organizations. Some areas of advocacy were defined as not lobbying and thus were not limited. The key provisions are Internal Revenue Code Section 501(h), which sets forth the eligibility rules, and Section 4911, which defines direct and grass roots lobbying, lists some exceptions, and establishes the percentage limits. The 1976 law seems to reflect two policy shifts in Congress and in the courts. First, it is no longer considered uncharitable to lobby. Lobbying may be one of the best ways to accomplish a charitable purpose. Also, Congress does want to receive the views of the charitable sector on legislation. Secondly, there has been a shift away from restricting political expression and a focus instead on the use of money raised from tax-deductible charitable contributions.[8] The policy now seems to be that while this government subsidy should mainly be used for charitable programs other than lobbying, within the 20% and 5% limits lobbying is an appropriate use of tax-deductible dollars. Furthermore, charities should be free to use non-monetary methods of lobbying. It is important to remember that to take advantage of the 1976 law, a charity must both (1) be eligible to make the 501(h) election and (2) take the affirmative step of filing Form 5768. Otherwise, the charity remains subject to the classic 1934 law, and the definitions, exceptions and percentage limits of the 501(h) election cannot be used to meet the "no substantial part" test.[9] Don't let the 501(h) terminology confuse you. If you make the election, you still keep your 501(c)(3) tax-exempt status. 501(h) simply allows you to have your lobbying measured on an expenditure basis, and does not change anything else. To demonstrate how the 1976 law works, we will go through the following steps: A. Charities eligible for the 501(h) election B. When and where to file Form 5768 C. The statutory definitions of lobbying, direct and grass roots D. Statutory exceptions to lobbying E. How to determine the base figure, upon which the percentage limits are computed F. How the percentage limits work G. How to keep records of lobbying expenditures H. Consequences of exceeding the percentage limits A. Charities eligible for the 501(h) election Whether a charity is eligible to make the 501(h) election depends on its foundation status classification issued by the Internal Revenue Service. Most charities will find this classification stated in the text of the organization's Section 501(c)(3) determination letter from the IRS. This chart summarizes the eligible classifications: Foundation Status Type Eligible 509(a)(1) group: 170(b)(1)(A)(I) Churches, etc. No 170(b)(1)(A)(ii) Educational institutions Yes 170(b)(1)(A)(iii) Hospitals, etc. Yes 170(b)(1)(A)(iv) Supporting government schools Yes 170(b)(1)(A)(v) Governmental units No 170(b)(1)(A)(vi) Publicly supported by grants and donations Yes 509(a)(2) Publicly supported by grants, donations, sales, etc. Yes 509(a)(3) Supporting organizations to public charities Yes 509(a)(4) Testing for public safety No Not classified Private foundations No B. When and where to file Form 5768 IRS Form 5768 is a simple, one page form that is self-explanatory at least as to where to file the form and other details of the filing process. The most important question is when to file the form. An eligible charity can file Form 5768 anytime during the first fiscal year that it wishes to have the 501(h) election apply. So, you can wait until the last day of the fiscal year, look back and review the year's activities and expenditures, and decide whether to file. However, if you think you might file, it is a good idea to make sure, earlier in the year, that your system for tracking lobbying expenditures is adequate. Once the charity files Form 5768, the 501(h) election continues in effect until the charity revokes it, also using Form 5768. However, you do not have the ability to look back at the end of the fiscal year to decide whether to take the year out of 501(h). When you file a revocation, the 501(h) election is removed beginning with the subsequent fiscal year. A charity can switch the 501(h) election on and off as often as it pleases. Keep a copy of the Form 5768 that you file, because the IRS ordinarily will not write back to you. If you file Form 5768, remind your accountant to complete Part VI, Schedule A, of your Form 990 tax return, to report your lobbying expenditures each year that the 501(h) election applies. C. The statutory definitions of lobbying, direct and grass roots The 1976 law recognized two forms of lobbying: direct and grass roots. This distinction is critical, because the direct lobbying limit for a charity under 501(h) is four times as high (20%) as the grass roots limit (5%). The definitions stated in the 1976 law used very general terminology. The 1990 IRS regulations, fortunately, removed the most serious ambiguities and sharpened the definitions. We recommend using the new regulations as the best guide to what is direct lobbying, what is grass roots, and what is neither. Nevertheless, it is important to know the statutory sub-structure upon which the regulations were built. Section 4911 contains the following definitions: Lobbying expenditures: Expenditures for the purpose of influencing legislation. Legislation: Action with respect to Acts, bills, resolutions, or similar items by the Congress, any State legislature, any local council, or similar governing body, or by the public in a referendum, initiative, constitutional amendment, or similar procedure. Legislative bodies in foreign countries are included. Action: Introduction, amendment, enactment, defeat, or repeal of Acts, bills, resolutions, or similar items. Direct lobbying: Any attempt to influence any legislation through communication with any member or employee of a legislative body, or with any government official or employee who may participate in the formulation of the legislation. Grass roots lobbying: Any attempt to influence any legislation through an attempt to affect the opinions of the general public or any segment thereof. D. Statutory exceptions to lobbying In the 1976 law, Congress sketched out five exceptions to the lobbying definitions, allowing charities to engage in certain kinds of communications beyond the percentage limitations. Again, the new IRS regulations have refined these exceptions and made some of them less significant, but it is hard to understand the regulations without first becoming acquainted with these exceptions, which are: 1. Making available the results of nonpartisan analysis, study or research. 2. Providing technical advice to a governmental body or committee in response to a written request by such body. 3. Appearances before, or communications to, any legislative body with respect to a possible decision of such body which might affect the existence of the organization, its powers and duties, tax-exempt status, or the deduction of contributions to the organization (the so-called "self-defense" exception). 4. Communications between the organization and its bona fide members with respect to legislation or proposed legislation of direct interest to the organization and such members, so long as members are not directly encouraged to lobby. 5. Communications with government officials or employees where the charity is not attempting to influence legislation. The 1976 law makes a major distinction affecting communications with members where the charity does directly encourage members to lobby. If members only are urged to contact government officials on legislation, it is direct lobbying by the charity. If members are asked to go outside the organization and urge nonmembers to lobby, it is grass roots lobbying by the charity. In other words, members are encompassed within the organization, and communications with them are simply internal messages related to whatever external lobbying, direct or grass roots, the charity is conducting. Figure 1 is a graphic presentation showing how direct and grass roots lobbying are defined. E. How to determine the base figure, upon which the percentage limits are computed Earlier, we said that the limits established for lobbying expenditures were percentages of the charity's budget. To be precise, the 1976 law states that the percentages are to be computed upon the charity's "exempt purpose expenditures." This base figure includes everything spent by the charity to accomplish its exempt purposes -- program service expenses, administration, and lobbying expenses as well. For capital expenditures, like the purchase of computers, straight-line depreciation may be included in the base. Expenses related to managing investments or generating unrelated business income, though, may not be included. The costs of charitable fundraising, if paid to an outside vendor primarily for fundraising, and costs incurred by a separate fundraising unit within the organization, are excluded from the base. The statutory treatment of fundraising expenses is important. If such costs were not excluded, the base figure for groups that engage in extensive direct mail, telemarketing or door-to-door solicitation would be swollen and distorted by the gross expenditures related to solicitation. The result would be that the lobbying percentages could be as large as, or larger than the organization's entire program budget. F. How the percentage limits work Each year that the 501(h) election applies, a charity must compute two expenditure limits -- its total lobbying limit and its grass roots lobbying limit. For an organization with exempt purpose expenditures of not more than $500,000 annually, the calculation is easy -- 20% for all lobbying and, within that, one-quarter (5%) for grass roots lobbying. For larger organizations, the limits are stepped down. Each year, the total lobbying limit is 20% of the first $500,000, plus 15% of the next $500,000, plus 10% of the next $500,000, plus 5% of the remainder, with an absolute cap of $1 million for all lobbying. Whatever the total lobbying limit is, the grass roots limit is one-fourth of that figure.[10] To prevent large charities from circumventing the stepped-down limits by the use of multiple organizations, the 1976 statute contains rules treating closely affiliated charities as one unit.[11] Why the law allows 20% of a charity's expenditures to go for direct lobbying and only 5% for grass roots lobbying, especially since direct lobbying aimed at a few legislators is less expensive than activating the public, remains a bit of a mystery. The rational explanation is that Congress wanted to encourage direct input from charities. The legalistic explanation is that some rough parity with the tax treatment of businesses was desired; businesses can deduct direct lobbying expenses but not grass roots lobbying expenditures. The cynical explanation is that Congress found grass roots lobbying to be too bothersome -- and too effective. G. How to keep records of lobbying expenditures The 1976 law does not specify how a charity should track its lobbying expenditures, and the new regulations supply only broad guidance. Really, with common sense and a good accountant, you should have no problems complying. All out-of-pocket expenses of lobbying, such as payments to lobbyists, travel to meet with legislators, costs of producing and sending materials, and telephone calls, are obviously to be reported. Payments for the preparation and dissemination of materials to the public, which mix lobbying messages with fundraising, educational and other messages, need to be reasonably allocated, an issue which the regulations do address. Internal expenses, such as staff salaries and benefits, rent, and other overhead items also need to be allocated partially to lobbying. We advise that all paid staff keep time records, showing the hours devoted each week to direct lobbying, grass roots lobbying, and other activities. This way, the charity is able to determine how much of its payroll and benefits can be attributed to lobbying. Also, the aggregate percentage of total staff time devoted to the two forms of lobbying can be used to allocate rent and other overhead costs. H. Consequences of exceeding the percentage limits If in any year the charity electing 501(h) exceeds the total lobbying limit or the grass roots lobbying limit, it must pay a 25% tax on the excess. If the charity exceeds both limits, the 25% tax is imposed only on the greater excess amount. This tax is automatically due to the IRS with the filing of the Form 990 reporting the excess lobbying expenditures made that year.[12] If, over any four year period, the charity's lobbying expenditures exceed either limit by more than 50%, the charity will automatically lose its Section 501(c)(3) tax-exempt status. For example, a small (under $500,000/year budget) organization will lose its exempt status if its total lobbying expenditures exceed 30%, or its grass roots lobbying expenses exceed 7.5%, of its exempt purpose expenditures, when four successive years are added together. Furthermore, the charity is prohibited from converting to a Section 501(c)(4) organization. The logic of the penalty provisions is that the 25% tax is an intermediate remedy. If a charity goes over the limit in one year, it pays the tax but has time to adjust its expenditures in future years to avoid the tax and to avoid loss of exempt status. Figure 2 demonstrates how the percentage limits work and the consequences of exceeding them. With the passage of the 1976 law, Congress established a workable, if somewhat complex, framework for charities desiring an alternative to the classic "no substantial part" test, and willing to measure their lobbying activities on an expenditure basis. However, in the ensuing 14 years, only a small percentage of eligible charities made the 501(h) election. Why not more? For one thing, so many concepts were left undefined by the statute -- grass roots lobbying, nonpartisan analysis, bona fide member -- that charities could not tell whether they would be better or worse off under the 501(h) election. The task of refining those concepts was left to the IRS to accomplish through the process of drafting, proposing, redrafting and finally issuing regulations. III. The 501(h) Election After the New Regulations (August 31, 1990) In 1986, ten years after the 501(h) election was enacted by Congress, the IRS released a proposed set of regulations to implement the statute. The 1986 version met with a huge protest from the charitable sector, since it made many restrictive interpretations of the 1976 law that would have discouraged charities from lobbying, contrary to Congressional intent. The IRS went back to the drawing board and produced a much more favorable version in 1988, which was finalized in 1990. The goal of the drafters, in their words,[13] was to strike "a very difficult balance between implementing a statutory scheme that expressly limits charities' lobbying expenditures and the desire of charities to participate in the public policymaking process to the greatest extent possible." They went on to say: To accomplish this, the Service crafted a number of bright-line, objective rules. Like all bright-line, objective rules, these rules are imperfect; in certain cases, the rules will inevitably permit expenditures to be treated as nonlobbying even though the public would probably consider those expenditures to be clear examples of lobbying. We will summarize the most important of these rules in four categories: direct lobbying, grass roots lobbying, nonlobbying advocacy, and some special rules to prevent abuse. A. Direct (20%) lobbying Definition of direct lobbying: A communication with a legislator or government official will be treated as direct lobbying if, but only if, the communication (1) refers to specific legislation, and (2) reflects a view on such legislation. Definition of specific legislation: Includes both legislation that has already been introduced in a legislative body, and a specific legislative proposal (though it may not have been introduced) that the organization either supports or opposes. Votes to confirm or reject executive branch nominees (e.g.,judges) are considered legislation.[14] Legislation includes a proposed treaty required to be submitted to the Senate for advice and consent, from the time the President's representative begins to negotiate with the prospective parties to the treaty. Ballot measures: Where a communication refers to and reflects a view on a measure that is the subject of a referendum, ballot initiative or similar procedure, the general public in the state or locality where the vote will take place constitutes the legislative body. Accordingly, if such a communication is made to one or more members of the general public in that state or locality, it is direct lobbying. In the case of a measure that is placed on the ballot by voter petitions, an item becomes "specific legislation" when the petition is first circulated among voters for signature.[15] Communications with members: A person is a member of a charity if the person pays dues or makes a contribution of more than a nominal amount, makes a contribution of more than a nominal amount of time, or is one of a limited number of honorary or life members. Bona fide members need not have voting rights in the organization. Communications to members on legislation, directly encouraging them to contact legislators, are treated as direct lobbying. If communications sent only or primarily (50%+) to members contain both lobbying and nonlobbying messages, the charity may make a reasonable allocation of costs between the messages. B. Grass roots (5%) lobbying Definition of grass roots lobbying: A communication (with the general public or any segment thereof) will be treated as grass roots lobbying if, and only if, the communication (1) refers to specific legislation, (2) reflects a view on such legislation, and (3) encourages the recipient to take action with respect to such legislation (a "call to action") in one of the four ways stated below. Encouraging recipient to take action: Means that the communication: (A) States that the recipient should contact a legislator or an employee of a legislative body, or should contact any other government official or employee who may participate in the formulation of legislation, or (B) States the address, telephone number, or similar information of a legislator or an employee of a legislative body, or (C) Provides a petition, tear-off postcard or similar material for the recipient to communicate with a legislator or an employee of a legislative body (or other government official involved in the legislation), or (D) Specifically identifies one or more legislators who will vote on the legislation as: opposing the charity's view on the legislation, being undecided, being the recipient's representative in the legislature, or being on the committee or subcommittee that will consider the legislation. (A), (B) and (C) are considered direct encouragement to take action; (D) is considered nondirect encouragement. C. Nonlobbying (unlimited) advocacy Any form of advocacy that falls outside of the 2-part direct lobbying definition, or the 3-part grass roots lobbying definition, is generally not lobbying at all and is unlimited. In addition, the regulations provide that the following exceptions, even if they fall within the direct or grass roots definitions, shall not be treated as lobbying: Nonpartisan analysis, study, or research: Means an independent and objective exposition of a particular subject matter. A particular position or viewpoint may be advocated so long as there is a sufficiently full and fair exposition of the pertinent facts to enable the public or an individual to form an independent opinion or conclusion. The mere presentation of unsupported opinion, however, does not qualify. Distribution of such communications may not be limited to, or be directed toward, persons who are interested solely in one side of a particular issue. If a communication falls within the 3- part test for grass roots lobbying, it cannot qualify as "nonpartisan," unless it contains only the nondirect call to action described in part (D), above. Examinations and discussions of broad social, economic, and similar problems: This exception covers public discussions, or communications with members of legislative bodies or governmental employees, the general subject of which is also the subject of legislation, so long as such discussion does not address itself to the merits of a specific legislative proposal and so long as no direct call to action is made. Requests for technical advice: This exception is basically the same as stated in the 1976 statute. Providing technical advice to a governmental body or committee in response to a written request by such body is not lobbying. The request must be made in the name of the committee or agency, rather than an individual member of the body. Self-defense lobbying: Appearances before, or communications to, any legislative body with respect to a possible decision of such body which might affect the existence of the organization, its powers and duties, tax-exempt status, or the deduction of contributions to the organization are not reportable lobbying activities, as the 1976 statute provides. This exception does not cover legislation, such as an appropriations bill, which (in the eyes of the IRS) merely affects the scope of the organization's future activities. D. Special rules to prevent abuse Much of the detail in the 1990 regulations consists of various presumptions, allocation principles, and other special rules to prevent the understatement of lobbying costs, especially where grass roots lobbying messages are mixed with nonlobbying material. Here, we review only three of the most important anti-abuse rules. Mass media advertisements: The IRS thought that some mass media ads, even if they don't contain all three elements of the 3-part test, should be considered grass roots lobbying anyway. So, the new regulations presume that a paid mass media ad is grass roots lobbying if it: (1) is made within two weeks before a vote by a legislative body or committee, on highly publicized legislation, (2) reflects a view on the general subject of that legislation, and (3) either refers to the legislation or encourages the public to contact legislators on the general subject of the legislation. The presumption may be overcome by showing that the timing of the ad was unrelated to the upcoming vote. The subsequent use rule: Generally, the costs devoted to researching and preparing lobbying materials are lobbying expenditures. However, a charity could try to avoid this rule by producing literature for or against certain legislation, without a call to action, and then send it out with a separate letter that encourages people to contact their legislators. To prevent this abuse, the IRS will consider that such legislative commentaries are in fact grass roots lobbying if they are used to lobby within six months after they were paid for, and if the primary purpose of the organization in preparing them was for use in lobbying. But if the charity, prior to or contemporaneously with the lobbying distribution, makes a substantial nonlobbying distribution of the materials, the costs of producing the commentary are deemed to be nonlobbying. The "same specific subject" allocation rule: This rule applies where a grass roots lobbying message is combined with nonlobbying material in a communication sent to the public, such as a newsletter or a direct mail fundraising solicitation. In addition to the cost of the lobbying message, all parts of the communication on the same specific subject must be treated as lobbying expenditures. The same specific subject includes discussion of activities or issues directly affected by the legislation, as well as the background or consequences of the legislation, or of those activities or issues. In many instances where the communication is focused on a narrow issue, this rule would make the entire cost of the communication a lobbying expense, except for the space devoted to the fundraising message, general information about the organization, or other subjects. As noted above, where the communication is only or primarily to bona fide members of the organization, the charity may make a more reasonable allocation of the costs. Figure 3 is a flow chart which condenses, on one page, the basic principles established by the IRS under the new rules for classifying activities as nonlobbying, direct or grass roots lobbying. The flow chart is linked to a staff timesheet shown as Figure 4. Conclusion: Deciding whether to make the 501(h) election For almost every organization, the benefits of making the 501(h) election will outweigh any perceived disadvantages. Under the 1976 statute and the 1990 regulations, many safe harbors for advocacy have been created. To name just a few --using volunteers to lobby, endorsing legislation without spending money to promote the endorsement, criticizing or praising legislation without a call to action, self-defense lobbying -- none of these are reportable under the 501(h) election, yet any one of them could cause loss of tax-exempt status under the classic 1934 "no substantial part" test. The expenditure of 20% of a charity's budget on direct lobbying, including ballot measures, which the 501(h) election allows, would probably never pass the "no substantial part" test. Even an organization that does no lobbying would be well-advised to make the 501(h) election, and report zero lobbying expenditures on its Form 990, in order to take advantage of the safe harbors and to establish a base of nonlobbying expenditures for future years when it may decide to lobby. For charities that have a companion 501(c)(4) lobbying organization, the 501(h) election provides the opportunity, each year, to transfer (by grant or contract) the maximum amounts permitted for direct and grass roots lobbying on issues of concern to the charity. Two concerns are frequently raised about the 501(h) election: Will electing 501(h) increase the chances of an IRS audit? No. The IRS has assured the charitable sector that this will not occur. Will electing 501(h) require a more elaborate accounting system? No. If you are doing any lobbying, you are required by Form 990, Schedule A, Part III, to report your charity's lobbying expenditures anyway, even if you remain under the "no substantial part" test. Furthermore, organizations that don't elect 501(h) must attach a statement to Schedule A giving a detailed description of their legislative activities and a classified schedule of the expenses involved. So far, we have encountered only two situations where the charity might benefit by not making the 501(h) election. The first situation occurs where a charity inadvertently spends in excess of the grass roots lobbying limit during a particular year. If it files Form 5768 and reports the amount as an excess expenditure on Form 990, it is forced to pay the 25% tax. By not filing Form 5768, the tax is avoided. This would only be done where the charity had a reasonable chance of passing the "no substantial part" test by showing that the expenditure was isolated and atypical, or that by other measures of its activity, such as the time expended or the effort of volunteers, its lobbying was truly insubstantial. The second situation arises where the charity is very large (e.g., a budget of $10 million) and it spends over $250,000 on grass roots lobbying. Mass media ads costing $300,000 would expose the organization to the 25% tax, even though the expenditure was only 3% of its total budget. Again, if the charity wants to avoid the tax and claim that 3% is not substantial, it should not elect 501(h) that year. If you find yourself in either situation, consult an attorney. A charity that does not make the 501(h) election, if it fails the "no substantial part" test, will lose its Section 501(c)(3) status. In addition, for each year that it failed the test due to its lobbying expenditures, the charity is subject to a 5% tax on the entire amount that it spent for lobbying that year. A 5% tax can also be imposed on organization managers who knowingly, willfully and without reasonable cause agreed to the expenditures.[16] The IRS is hoping that many more charities that do lobby will file the 501(h) election, because compliance is easier to monitor. It should come as no surprise if one day soon the IRS decided to challenge the exempt status of a nonfiling charity that lobbied "substantially" but would have been safe under the 501(h) election. Filing the 501(h) election, both to protect the organization and to take advantage of the superb opportunity now available to influence public policy more aggressively, is an important decision for every Section 501(c)(3) organization to consider. Unless you have already filed, this decision deserves your careful attention between now and the end of your organization's current fiscal year. FLOW CHART ON PUBLIC POLICY ACTIVITIES This is a general guide to the logic of the IRS rules on lobbying by public charities that elect the expenditure test under IRC 501(h). Refer to the IRS regulations for precise definitions of the concepts indicated in this flow chart. The "key" number connects this chart to categories used on the Staff Timesheet for recording employee hours spent on lobbying and nonlobbying activities. Type of Activity (Key) Does the activity involve expressing the organization's views? No _Research and Study (1) Yes On a specific legislative or administrative proposal? No General Education Yes and Advocacy (2) Does it only involve action by an administrative body? Yes Administrative No, it is legislative. Advocacy (3) Is it a full and fair exposition of the facts, with no direct call to action? Yes Nonpartisan Analysis (4a) No Is it a communication to the public on a ballot measure? Unlimited Yes No Is it a response to a written request from a legislative committee or government body? Yes Technical Advice (4b) No Does the issue affect the legal existence, powers, duties, or tax-exempt status of the organization, or the deductibility of contributions to it? Yes Self-Defense (4c) No Is it a communication to the public or to members without a specified call to action? Yes Legislative Comment (4d) No - - - - - - - - - - - - - - - - - - - - -- - - - - - - - - ------------------------------------------- Is it a communication to a legislative or other government official? Yes Direct Lobbying (5a) No Is it a communication to members directly encouraging them to contact legislative or other government officials? 20% Limit* Yes Direct Lobbying (5b) No Yes Direct Lobbying (5c) - - - - - - - - - - - - - - - - - - - - - - - - - - - - - ------------------------------ --------------- Does it contain a call to action to activate the public, or does it come under the mass media or subsequent use rules? Yes 5% Limit* Grass Roots Lobbying (6) *For organizations with annual budgets up to $500,000. Limits are stepped down for larger organizations. The 5% limit is within the overall 20% limit. copyright 1991 silk, adler & colvin 7/17/91 STAFF TIMESHEET Employee Name___________________________________ Week of: ______________________________________ I. Program Services Public MON TUE WED THUR FRI TOTAL Policy Key: A. Public Policy 1. Research and Study 1 ____ ____ ____ ____ ____ ____ 2. General Education/Advocacy (No Specific Proposal) 2 ____ ____ ____ ____ ____ ____ 3. Administrative Advocacy 3 ____ ____ ____ ____ ____ ____ 4. Legislative Advocacy: Nonlobbying a. Nonpartisan Analysis 4a ____ ____ ____ ____ ____ ____ b. Response to Technical Advice Requests 4b ____ ____ ____ ____ ____ ____ c. Self-Defense Lobbying 4c ____ ____ ____ ____ ____ ____ d. Legislative Comment (No Call to Action) 4d ____ ____ ____ ____ ____ ____ 5. Legislative Advocacy: Direct Lobbying a. Communications to Legislators, Etc. 5a ____ ____ ____ ____ ____ ____ b. Member Communications to Encourage Lobbying 5b ____ ____ ____ ____ ____ ____ c. Ballot Measure Activities 5c ____ ____ ____ ____ ____ ____ 6. Legislative Advocacy: Grass Roots Lobbying 6 ____ ____ ____ ____ ____ ____ B. Other Program Services (Not Public Policy Oriented ____ ____ ____ ____ ____ ____ II. Management and General ____ ____ ____ ____ ____ ____ III. Fundraising ____ ____ ____ ____ ____ ____ IV. Leave (Vacation, Illness, Etc.) ____ ____ ____ ____ ____ ____ TOTALS ____ ____ ____ ____ ____ ____ Signature______________________________________ SYSTEMS ADVOCACY SCENARIO ONE ' They Just Aren't Motivated' The Mid-Cities ILC, a medium-sized, urban-based center, is committed to involving more people in systems change activities. Part of the plan is to offer advocacy skills building workshops to people with disabilities in the community. Jerry and Fred, center staff, planned the center's first advocacy skills workshop to occur over two weekends in March. They worked hard to create a program involving many in interactive activities, interesting speakers, and an inspiring set of handouts. Jerry and Fred recruited people by sending out a flier to everyone on the center's mailing list and putting an article in the center's newsletter. The response was dismal. Four people responded with questions and only two actually signed up for the workshop. Jerry and Fred come to you, the executive director, and say, "Well, they just aren't motivated. I don't know why we are trying to do this--it's the same response we get when we plan a demonstration or try to get people out for a hearing: no one comes." Your first question to the staffers is, "So, what went wrong?" Discussion Points 1. Are people really not motivated? 2. Is there anything else Jerry and Fred could have done? 3. Could oppression be playing any role in what is going on here? SYSTEMS ADVOCACY SCENARIO TWO ' Who Gets Credit?' Lack of curb cuts in Stagnant City's central business district continues to be a major barrier. The problem is widely recognized and often bitterly discussed by local residents with disabilities. There is no continuous path of travel in the business district; people unable to negotiate curbs have been forced to use the streets. There have been many near accidents, several accidents, and even one death! Yet, nothing has been done. Even though ADA has now been law for several years, there have been no new curb cuts constructed in over nine years. Although the disability community disagrees on many issues, there is has been consensus for years that this is a major problem and huge barrier. Recently, the newly formed local ADAPT chapter organized an action bringing out over a hundred people to protest lack of curb cuts at the business district's busiest intersection. There was an array of protest signs, "street theater" involving protesters pounding on curbs with hammers, and excellent newspaper, radio, and television coverage. Four people were arrested for using sledge hammers to actually break down curbs. The independent living center did not participate as an organization. Four months later, the entire business district had newly constructed curb ramps. At a board meeting, Terry, executive director of the local independent living center, boasted, "We finally got those curb cuts and had a real advocacy win!" Jerry, a well-respected board member serving her fourth year on the board confronted the executive director exclaiming, "What's this 'we' stuff? The center can't take credit for any of this! What did the center do?" Terry's response was that he had, ". . . been serving on the mayor's committee on disability issues. I belong to and attend meetings of the chamber of commerce and the Rotary Club, and I have always talked about the need for these curb ramps." Not satisfied with this response, Jerry insisted, "You may have talked about it, but talk is cheap. I have never seen this stated as an advocacy goal for the center, even though the board has asked that it be done several times. Furthermore, you constantly complain to us about how worthless the mayor's committee is. The center can't take credit for any of this." Discussion Points 1. Should the center take credit? Why? 2. What evidence would indicate that the center could take credit for this advocacy win? 3. What is missing regarding the executive director's role on the mayor's committee, chamber of commerce, and Rotary? SYSTEMS ADVOCACY SCENARIO THREE ' John's Dilemma' John is the executive director of a large urban center for independent living and, as such, a member of the state center for independent living association (SCILA). At a recent meeting of the SCILA, the legislative committee which John chairs gave an update on recent cutbacks to the state's personal assistance services program. It has become apparent that cutbacks in funding to the program will result in the reduction of services to persons already living in the community, forcing entry into nursing homes for many of the participants. It is recommended by the legislative committee that action must be directed specifically toward Senate and House leadership in the state. John's committee proposes that centers located in legislative leaders' districts conduct concurrent demonstrations in front of the legislator's local office. Bill, the director of a rural center, immediately raises his hand to object to the suggestion. "We don't do that in our community. That's just not the way to get things done," he argues. He goes on to explain that Sen. Smith, the majority leader, is from a prominent local family and his brother is mayor of the small rural town. "You don't understand the implications of what you're asking. We're all friends in Hillville, and if I embarrass him in front of the community our center will be ruined," he said. Bill goes on, "Why, the mayor, Jim Anderson (the VR district administrator), and I even belong to the same Kiwanis Club." John, irritated that he does not have the full support of SCILA members, blurts out that Bill seems more interested in maintaining his friendships than in disability rights. Ellen, who also runs a small rural CIL adds, "You just don't know what it's like to run a CIL in a rural community." 1. Is there, in fact, a difference between how you do advocacy in rural versus urban communities? 2. Should status or friendships be a concern for CIL advocates? 3. How do you, as a member of a CIL association, deal with CIL directors who avoid hard-hitting advocacy? SYSTEMS ADVOCACY SCENARIO FOUR ' Jane's Dilemma' Jane has been the director of a center for independent living in a southwestern city for over eight years. Although recognized as a hard-hitting independent living advocate, she is well-respected by bureaucrats in the state vocational rehabilitation program because of her superior management skills. Her center is universally recognized as a strong, stable organization and leader in the disability community. Mike Winston, the director of the state vocational rehabilitation program, has invited Jane to attend a meeting with the regional commissioner, Betty Hopkins, regarding the development of a satellite center. Jane agrees to attend and is intrigued because, although there is great need in her state, she is unaware of any funding through the statewide independent living council. Upon arrival at director Winston's office, Jane is informed that the Rehabilitation Services Administration is making some additional Innovative Services funds available for the development of CILs on Native American reservations. "Jane," asks Commissioner Hopkins, "have you had any luck working with the Rio River Indians?" Jane just shakes her head and tells the commissioner that, although she has made several attempts to work with the Rio River Indians, she has had little success. "I've tried several times. At first they seem interested, but then never follow through," she says. "Once, I found some extra funding which could be used on the reservation and I presented it to a member of the social service staff at their hospital. Nothing came of it." "We've had troubles, too," confirms the commissioner. "We make programs available but they just don't seem to care enough to take advantage of them." Director Winston chimes in that he visits the reservation at least once a year and also has had no luck in working with the tribe. After several more minutes of commiserating about the fruitlessness of their efforts, the commissioner informs Jane that each region has been given $100,000 to start a center to specifically address the needs of Native Americans. He makes it clear that he will facilitate the funding of a project if Jane can find some way to "get the Indians involved." As Jane drives back to her office, she stops by the American Indian Hospital located in her city to speak with Sam Whitehorse, a social worker and Native American, regarding her dilemma. After hearing Jane's description of the situation, Sam just smiles and suggests, "First, why don't you take time to understand the Rio River Indian tribe?" 1. What are Jane, Mike, and Betty doing wrong? 2. What might be a better approach when trying to open CIL doors to members of other cultures? 3. What are some principles for achieving cultural diversity, and are they the same for all cultures? SYSTEMS ADVOCACY READINGS Alinsky, Saul. Reveille for Radicals. New York: Random House, 1969. Alinsky, Saul. Rules for Radicals. New York: Random House, 1971. Caplan, Marc. Ralph Nader Presents A Citizen's Guide to Lobbying. New York: W.W. Norton & Co., 1983. An excellent reference book for people wanting to participate fully in the legislative process. Helpful in detailing the entire legislative process. Important for people with a desire to get bills passed and influence the legislature. Areas of focus include: understanding the legislature, laying groundwork, doing the background research and homework, organizing support for your issues, dealing with press, fundraising, legislative committees, public hearings, negotiations, lobbying the floor, floor debate, and beyond the legislative session. For information on obtaining a copy, contact W.W. Norton & Co. at 500 Fifth Ave., New York, NY 10110. Bennis, W. and Nanus, B. Leaders: The Strategies for Taking Charge. New York: Harper & Row, 1985. Branch, Taylor. Parting the Waters. New York: Simon and Schuster, 1988. Covey, Stephen R. The 7 Habits of Highly Effective People. New York: Simon and Schuster, 1989. French, Marilyn. Beyond Power. New York: Ballantine Books, 1985. Kahn, Si. Organizing: A Guide for Grassroots Leaders. New York: McGraw-Hill, 1982. Kasnitz, D.,Tanis, D., Bruckner B. Executive Summary of: Leadership and Peer Support In the Independent Living Disability Rights Movement. Rehabilitation Research and Training Center on Public Policy and Independent Living, World Institute on Disability, 510 Sixteen Street, Oakland, Ca 94612, 1996 Morris, Jenny. Pride Against Prejudice: Transforming Attitudes to Disability. Pennsylvania: New Society Publishers, 1991. Townsend, Robert. Up the Organization. Knopf, New York. 1970 Available from ILRU Kailes, June Isaacson. Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center. Houston: ILRU, 1988. Few subjects facing the independent living field are more important than advocacy. This monograph challenges people involved in managing centers for independent living to ensure that advocacy has a priority prominent position. Topics covered in detail include: why advocacy is so important; advocacy and service; the dual commitment; establishing an effective systems advocacy approach; advocacy's place in direct services; independent living networks; lobbying; need to determine advocacy priorities; development of new disability leadership; preventing or reducing the impact of burn-out; cloning; devoting significant time and resources to systems advocacy; what constitutes representative community input; who is responsible for systems advocacy; threat of co-optation; and much more. Important reading for board members, advocacy skills trainers, staff and volunteers of centers for independent living or disability-related organization by, for, or of people with disabilities. Available from the National Training and Information Center (NTIC) Trapp, Shel. Basics of Organizing. Chicago: National Training and Information Center, 1986. Good information regarding leadership development, organizing small groups, public meetings and demonstrations. Also, shares tips regarding negotiating, presenting facts and organizing staff meetings, retreats, newsletters, and working the media. Trapp, Shel. Dynamics of Organizing. Chicago: National Training and Information Center, 1986. A look at power analysis, strategy and tactics, developing an issue group, organizing a coalition, building power and victories, and the values that organizers subscribe to. For information about obtaining the above books, contact the National Training and Information Center at 810 N. Milwaukee Avenue, Chicago, IL 60622; (312) 243-3035 (V). Available on the World Wide Web The Clemmer Group. http://www.clemmer-group.com/. (As of January 7, 1997.) Available on DIMENET Location: "Documents" file area File Name: special.txt Size: 2,878 bytes Date Uploaded: 9/93 Content: "It's Time to Get Rid of Special!" A short piece which discusses the inappropriate use of the word "special" to mean "accessible," and suggests that "special" may be as bad for us as the annual ritual humiliation of the Jerry Lewis Telethon. From the Center for Independent Living of North Florida. Location: "Documents" file area File Name: map.exe Size: 60,268 bytes Date Uploaded: 11/93 Content: "The Movement Action Plan: A Strategic Framework Describing the Eight Stages of Successful Social Movements," by Bill Moyer, Spring 1987. A long but outstanding article on the phases and stages of social movements. It is well worth the reading time. This article is in a self-unpacking zipped archive file. Download the file and then from the DOS prompt, type "map" and press to unpack the document "map.doc." Location: "IL_NETWORK" file area File Name: power.wp (WP 5.1); powero1.asc (ASCII) Date Uploaded: 7/95 Content: "The Power of One Person." Written by Mary Johnson and published in The Disability Rag, January/February 1992. This paper tracks the efforts and amazing successes of individuals to push the envelope for accessibility in their communities by using existing legislation (section 504 of the Rehabilitation Act, the ADA, the Fair Housing Act) and pursuing complaints with the Department of Justice. Location: "IL_NETWORK" file area File Name: stemtid.wp (WP 5.1); stemtid.asc (ASCII) Date Uploaded: 7/95 Content: "To Stem the Tide." Written by Laura Younkin and published in The Disability Rag, September/October 1989. A convincing look at the powerful influence letters to the editor can have to advocate for appropriate and nondiscriminatory representations of disability in print media. Includes recommendations for creating effective letters. Location: "IL_NETWORK" file area File Name: rdream.wp (WP 5.1); rdream.asc (ASCII) Date Uploaded: 7/95 Content: "Our Dream: Equality." Written by Duane French and published by the Alaska Center for Independent Living, 1994. A long-time advocate for disability rights (and recently appointed director of the state VR agency in Alaska), French addresses the question of appropriate roles for people without disabilities in independent living and the importance of the need for promoting integration and equality in the movement. There are several dial-up numbers for DIMENET: 508-880-5412 (Taunton, MA), 937-341-5202 (Dayton, OH), 918-582-3622 (Tulsa, OK), 610-670-5913 (Sinking Spring, PA), and 412-223-0160 (Washington, PA). For further information on DIMENET and how to connect, contact Roland Sykes at 513-237-8360. LEGISLATIVE ADVOCACY RESOURCES For more information on lobbying and legislative advocacy issues contact: National Council on Independent Living (NCIL) Independent Sector 2111 Wilson Blvd., Suite 405 1828 L Street, NW Arlington, VA 22201 Washington, D.C. 20036 (703) 525-3406 (V) (202) 223-8100 (V) (703) 525-3407 (TTY) (202) 659-2729 (TTY) (703) 525-3409 (fax) (202) 416-0580 (fax) League of Women Voters US Congress Handbook 1730 M Street, NW Box 566 Washington, D.C. 20036 McLean, VA 22101 (202) 429-1965 (V) 1-800-229-3572 (202) 429-0854 (fax) (703) 356-3572 (V) (703) 760-0942 (fax) Materials related to legislative advocacy: Facts and Myths. Washington, D.C.: Independent Sector, 1994 (video). Willett, Edward F. How Our Laws Are Made. For sale by Superintendent of Documents, US Government Printing Office, Washington, D.C. 20402. (1990). Lobby? You? Washington, D.C.: Independent Sector, no date. Lobby Regulations. Washington D.C.: Independent Sector, 1991, (video). Smucker, Bob. The Nonprofit Lobbying Guide. San Francisco: Jossey-Bass Publishers, 1991. Kailes, June. Putting Advocacy Rhetoric into Practice. Houston: ILRU, 1988. Pullen, Dale. The US Congress Handbook, 104th Congress. McLean: Barbara Pullen, 1995. IL NET RESOURCE MATERIALS The IL NET: National Training and Technical Assistance project, a collaboration of the National Council on Independent Living (NCIL) and the Independent Living Research and Utilization (ILRU) Program, is committed to promoting a national network of centers for independent living, statewide independent living councils, and others involved in the independent living field. Through training and technical assistance activities, project staff seek to provide individuals at all levels of expertise with educational and networking opportunities. To enhance our ability to reach as wide an audience as possible, we are making many of our training materials available in the form of individual fact sheets and packets. The following is a description of resource materials concerning the Rehab Act, statewide independent living councils, state IL plans, funding, and other topics. These materials may be duplicated without acquiring permission, providing that the following credit is given to the project: "Developed as part of the IL NET: NCIL/ILRU National Training & Technical Assistance Project." All materials are available in accessible formats, including copies available to download in either WordPerfect or ASCII from DIMENET in the IL_NETWORK file area. For fact sheets about the Rehab Act, download file 'rehab1.wp' or 'rehab1.asc.' For fact sheets about SILCs, download 'silcpak1.wp' or 'silcpak1.asc.' You will also find each piece of the packets available individually. For assistance with downloading call (808) 880-5325 (v/TTY) or (513) 439-0071 (v), 439-0072 (TTY). For further information or technical assistance, contact ILRU at (713) 520-0232 (v), 520-5136 (TTY) or NCIL at (703) 525-3406 (v), 525-3407 (TTY). FACT SHEETS ABOUT THE REHAB ACT Amendments to the Rehab Act: 1986 & 1992: A Comparison--a set of charts showing changes in the Rehab Act which occurred from 1986 to 1992. Where to Get Information About the Rehabilitation Act--how to obtain copies of the Rehab Act and related background information from the government, from public records, and from DIMENET, the national computer bulletin board for independent living. Terminology Related to the Legislative and Regulatory Process--explanations of terms and concepts related to the legislative process. Key OSERS Staff--a listing of top-level staff members of the Office of Special Education and Rehabilitation Services, the Rehabilitation Services Administration, and the National Institute on Disability and Rehabilitation Research (NIDRR). FACT SHEETS ABOUT STATEWIDE INDEPENDENT LIVING COUNCILS (SILCs) Composition of Statewide IL Councils--an easily understood overview of SILC responsibilities, composition criteria, and examples of some of the problems faced by state IL councils with direct, concrete suggestions for dealing with them. Questions About SILC Governance--identifies many of the pivotal questions an organization can use to establish the bylaws with which it governs itself; covers specific questions for councils operating as private, nonprofit corporations and seeking a tax exempt status. What Every SILC Member Should Know--a checklist of basic information that each SILC member should understand in order to be an effective, voting participant of a statewide IL planning body. Prototype Job Descriptions--basic duties, authorities, and qualifications for the SILC chair, vice-chair, secretary, treasurer, and member; intended as a guideline from which to build individualized descriptions. SILC Profile Analysis--a grid designed to reveal a basic profile of any SILC by mapping characteristics and affiliations of the members; simple, easy-to-follow instructions show whether or not a council is consumer controlled according to legal mandate. SILC Membership Compliance Assessment--a checklist for determining whether or not your SILC is in compliance with the compositional guidelines outlined in section 705(b)(2) the Rehab Act. Directory of Statewide IL Councils--a complete list of all SILCs with contact information for state chairs; current as of May 1995. AUTHORIZED USES OF FUNDS AVAILABLE TO THE STATE IL COUNCIL Authorized Uses of Title VII, Part B--this document gives an overview of the history and development of Title VII, with an emphasis on gains made in controlling how the dollars allotted to support independent living programs and services are spent. Funding Under SILC Jurisdiction--identifies funding sources available to the statewide IL council: Title VII, Parts B and C, Title I, Part C, Social Security Reimbursement Funds, and private or other sources. Funding for Title VII, Part B: Fiscal Years 1994 & 1995--exact 1995 dollar amounts allocated from this source for each state and territory. Funding for Title VII, Part C: Fiscal Year 1994--dollar amounts by state and territory showing 1994 allotments as well as post-reallotment amounts for fiscal year 1993. Revised 3/96 _________________________ Developed by the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living subjects may be directed to the IL NET Project, c/o ILRU at (713)520-0232 (v), 520-5136 (TTY), 520-5785 (Fax), or NCIL at (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (Fax). NATIONAL RESOURCES ON INDEPENDENT LIVING Several national organizations have been established to provide technical assistance on particular concerns relevant to issues in independent living. National Council on Independent Living Founded in 1982, NCIL is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to incorporate independent living philosophy in federal legislation and regulations. National headquarters are located outside Washington, D.C. at 2111 Wilson Blvd., Suite 405, Arlington, VA 22201; (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (fax). Association of Programs for Rural Independent Living One of the best resources for information about rural independent living is APRIL. Established in 1986, APRIL is an association of 33 centers and other organizations and individuals across the country serving a predominantly rural constituencies. For further information, contact APRIL president Michael Mayer at the Summit Independent Living Center, 1900 Brooks Street, #120, Missoula, Montana 59801, (406) 728-1630 (v/TTY), or Linda Tonsing Gonzales at 1919 Kiva Road, Santa Fe, New Mexico, 87505, (505) 984-8035 (v/fax). Disability and Business Technical Assistance Centers on ADA There are ten regional DBTACs funded by the National Institute on Disability and Rehabilitation Research, the U.S. Department of Education, to provide technical assistance and training on the Americans with Disabilities Act (ADA). The Southwest DBTAC, operated by ILRU, features an Hispanic outreach program. By calling 1-800-949-4232 from anywhere in the country, your call will be routed automatically to the appropriate regional DBTAC. American Disabled for Attendant Programs Today One of the oldest and most active grassroots disability rights advocacy groups is ADAPT. Following its tremendous success in advocating for accessible transportation, ADAPT has focused its mission on personal assistance services. With local chapters in many cities around the country, ADAPT is centered in Colorado at 201 South Cherokee St., Denver, CO 80223; (303) 733-9324 (v), 733-6211 (fax). Disability Rights Education and Defense Fund DREDF is an organization dedicated to promoting the civil rights of individuals with disabilities through research, education, and advocacy. The DREDF offices are located at 1633 Q St., NW, Suite 220, Washington, D.C. 20009; (202) 986-0375 (v), 462-5624 (fax) and 2212 Sixth Street, Berkeley, CA 94710; (510) 644-2555 (v), 841-8645 (fax). Disabled Individuals Movement for Equality Network DIMENET is a computer network that serves the independent living and disability rights movements. It was established in 1985 to meet the demand for a computer network that directly serves the interests of all people with disabilities and that is fully accessible to people with visual impairments. You can access DIMENET from any of three host sites: (508) 880- 5412 (Taunton, MA), (513) 341-5205 (Dayton, OH), and (918) 582-3622 (Tulsa, OK). If you have problems or questions regarding accessing DIMENET, technical assistance is also available from individuals at DIMENET regional host sites: Taunton (508) 880-5325 (v/TTY), Dayton (513) 439-0071 (v), 439-0072 (TTY), and Tulsa (918) 592-1235 (v/TTY). Additional help may be obtained from Roland Sykes at (513) 237-8360 (v) or Paul Spooner at (508) 875-7853 (v/TTY). Independent Living Research Utilization Program ILRU Program is a national center for information, training, research, and technical assistance on independent living. Founded in 1977, its goal is to expand the body of knowledge in independent living and to improve utilization of results of related research and demonstration projects. ILRU, 2323 S. Shepherd, Suite 1000, Houston, TX 77019; (713) 520-0232 (v), 520- 5136 (TTY), and 520-5785 (fax). World Institute on Disability Originally founded in 1983 from within the grassroots disability rights movement, WID's focus is now international in scope. WID conducts research and training in public policy, personal assistance services, and independent living from its headquarters at 510 16th Street, #100, Oakland, CA 94612; (510) 763-4100 (v/TTY). RESEARCH AND TRAINING CENTERS ON INDEPENDENT LIVING Four research and training centers funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education, focus on independent living. They are: the ILRU Research and Training Center on Independent Living at TIRR; the RTC: IL at the University of Kansas; the RTC on Personal Assistance Services at the World Institute on Disability (WID); and the RTC on Public Policy and Independent Living, also at WID. All four centers conduct research and training projects designed to address the needs of individuals with disabilities, as well as state and private entities involved with independent living. More information about each is given below. ILRU Research and Training Center on Independent Living at TIRR The goals of the ILRU RTC are to enhance management performance in independent living centers through improved management and operational practices developed and tested in research-based models, and disseminated through training, technical assistance, and materials development projects. A major emphasis of these training and technical assistance projects is the promotion of networking among individuals and organizations in the independent living field. ILRU RTC is guided by the independent living philosophy, particularly with regard to the substantial involvement of people with disabilities at all levels of RTC operations. Director: Lex Frieden Associate Director: Quentin Smith Director of Research: Peg Nosek Director of Training: Laurel Richards Coordinating Director: Laurie Gerken Redd For more information, contact: ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (v), 520-5136 (TTY), 520-5785 (fax) URL: http://www.bcm.tmc.edu/ilru Research and Training Center on Independent Living at the University of Kansas The University of Kansas operates a national research and training center which focuses on aspects of independent living particular to rural and other underserved populations, including persons with cognitive and psychiatric disabilities. In addition, the RTC conducts consumer control training, conducts research in prevention of secondary health conditions in people with disabilities, and studies successful attainment of vocational rehabilitation goals. Director: Glen W. White Co-Director: James F. Budde Assistant Director: John Youngbauer Training Director: Kenneth J. Golden For more information, contact: RTC-IL at Kansas 4089 Dole Building University of Kansas Lawrence, KS 66045 (913) 864-4095 (v/TTY), 864-5063 (fax) URL: http://www.lsi.ukans.edu/rtcil/rtcbroc.h tm The Research and Training Center on Public Policy and Independent Living Funded by NIDRR at the World Institute on Disability, the RTC-PPIL conducts research and training on major disability policy issues including independent living, leadership development, peer support, and community integration. In addition, WID is attempting to establish the first full curriculum for disability studies. The program will offer courses of study at the undergraduate, graduate, professional training, and continuing education levels. Director: Herb Leibowitz Director of Research: Tanis Doe For more information, contact: RTC-PPIL World Institute on Disability 510 16th Street, Suite 100 Oakland, CA 94612-1500 (510) 763-4100 (v/TTY), 763-4109 (fax) The Research and Training Center on Personal Assistance Services at WID One of two RTCs operated by WID, the RTC-PAS was established for the purpose of creating greater understanding about how personal assistance service systems can further the self- sufficiency and economic independence of individuals with disabilities. The RTC will perform a comprehensive evaluation of PAS programs across the country and will seek to define effective PAS from the consumer's point of view. In developing new service programs, the RTC-PAS also focuses on underserved or unserved populations. Director of Training: Simi Litvak Research Assistant: Valerie Bivona For more information, contact: RTC-PAS World Institute on Disability 510 16th Street, Suite 100 Oakland, CA 94612-1500 (510) 763-4100 (v), 208-9493 (TTY), 763-4109 (fax) Revised 6/96 _________________________ Developed by the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living issues may be directed to the IL NET Project, c/o ILRU at (713) 520- 0232 (v), 520-5136 (TTY), 520-5785 (fax), or NCIL at (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (fax). READINGS FOR THE INDEPENDENT LIVING AND DISABILITY RIGHTS MOVEMENTS DeJong, Gerben. "Independent Living: From Social Movement to Analytic Paradigm." Archives of Physical Medicine and Rehabilitation 60 (October 1979): 435-446. DeJong, Gerben. "Physical Disability and Public Policy." Scientific American 248, no. 6 (June 1983): 40-49. DeJong, Gerben. Environmental Accessibility and Independent Living Outcomes: Directions for Disability Policy and Research. East Lansing: University Center for International Rehabilitation, 1981. DeJong, Gerben and Janice Hughes. Report of the Sturbridge Conference on Independent Living Services. Boston: Tufts Medical Rehabilitation Research and Training Center, 1981. Fasser, Carl E., Quentin Smith, Lex Frieden, Laura W. Smith, J. David Holcomb. "Addressing the Health Care Needs of People with Disabilities." Journal of the American Academy of Physician Assistants 7, no. 1 (January 1994): 26-32. Kailes, June. "Language is More Than a Trivial Concern!" (1984) reprinted in Disability Pride and A Guide to Planning Accessible Meetings (available through ILRU publications). Kailes, June Isaacson. Disability Pride: The Interrelationship of Self-Worth, Self-Empowerment, & Disability Culture. Houston: ILRU Program, 1993. Kailes, June Isaacson, and Darrell Jones. A Guide to Planning Accessible Meetings. Houston: ILRU Program, 1993. Kailes, June Isaacson. Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center. Issues in Independent Living No. 8. Houston: ILRU Program, 1988. Lachat, Mary Ann. An Evaluation and Management Information System for Independent Living. Staying on Track: ILRU Management Support Series. Houston: ILRU Program, 1988. Lachat, Mary Ann. The Independent Living Service Model: Historical Roots, Core Elements, and Current Practice. Hampton: Center for Resource Management, 1988. National Council on the Handicapped (now the National Council on Disability). Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities - With Legislative Recommendations. February 1986. Available from NCD, 1331 F Street, NW, Suite 1050, Washington, DC 20004 (202) 272-2004 (v), 272-2074 (TTY). National Council on the Handicapped (now the National Council on Disability). On the Threshold of Independence: A Report to the President and the Congress of the United States. January 1988. Available from NCD (see above). Nosek, Peg, Yayoi Narita, Yoshiko Dart, and Justin Dart. A Philosophical Foundation for the Independent Living & Disability Rights Movement. Occasional Paper No. 1. Houston: ILRU Program, 1982. Pflueger, Susan Stoddard. Independent Living. Emerging Issues in Rehabilitation. Washington, D.C.: Institute for Research Utilization, 1977. Richards, Laurel and Quentin Smith. An Orientation to Independent Living Centers. Houston: ILRU Program, 1987. Shapiro, Joseph P. No Pity. New York: Random House, Inc. 1993. Shreve Maggie, Patricia Spiller, Eric Griffin, Nancy Waldron, and Lynda Stolzman. Martha Williams, ed. Consumer Control in Independent Living. Available from: Center for Resource Management, 2 Highland Road, South Hampton, NH 03847; (603) 394-7040 (v/TTY), 394-7483 (fax). Smith, Quentin, Lex Frieden, and Laurel Richards. "Independent Living." Encyclopedia of Disability and Rehabilitation. New York: Macmillan, Inc., (in press, 1994). Smith, Quentin, Laura W. Smith, Kym King, Lex Frieden, and Laurel Richards. Health Care Reform, Independent Living, and People With Disabilities. Issues in Independent Living No. 11. Houston: ILRU Program, 1993. United States Department of Education. Comprehensive Evaluation of the Title VII, Part B of the Rehabilitation Act of 1973, as Amended, Centers for Independent Living Program. January 1986. Available through clearinghouses (see below). Willig, Chava Levy. A People's History of Independent Living. 1988. Available from the Research and Training Center on Independent Living, 4089 Dole Building, University of Kansas 66045; (913) 864-4095 (v/TTY). In a special edition on independent living in American Rehabilitation 20, no. 1 (Spring 1994): Giordiano, Gerard and Bruno J. D'Alonzo. "The Link Between Transition and Independent Living," 2-7. Shreve, Maggie. "The Greater Vision: An Advocate's Reflections on the Rehabilitation Act Amendments of 1992," 8-13. Smith, Laura W., Quentin W. Smith, Laurel Richards, Lex Frieden, and Kym King. "Independent Living Centers: Moving Into the 21st Century," 14-22. Chappell, John A., Jr. "The Whole is Greater Than the Sum of its Parts," 23-29. Moore, J. Elton and Barry C. Stephens. "Independent Living Services for Older Individuals Who are Blind: Issues and Practices," 30-34. Montagano, Tim. "Bringing the Rehabilitation Family Together: An IL-VR Partnership," 35- 36. Lougheed, Val, Bev Hunter, and Susan Wilson. "Partners for Independence: A Team Approach to Community-Based Rehabilitation," 37-38. Baker, David. "Independent Living in Communities: The Role of the Independence Fund in Vermont," 39-41. Lachat, Mary Ann. "Using the Power of Management Information System Technology to Support the Goals of Centers for Independent Living," 42-48. In a special issue on independent living in OSERS 6, no. 2 (Winter-Spring 1994): French, Duane. "Independent Living: Driven By Principles of Democracy," 37-38. Kafka, Bob. "Perspectives on Personal Assistance Services," 11-13. Kennedy, Jae, Hale Zukas, and Simi Litvak. "Independent Living and Personal Assistance Services: The Research, Training, and Technical Assistance Programs at the World Institute on Disability," 43-45. Mathews, Mark R. "Learning from the Experts: Best Practices in Rural Independent Living," 23-29. Michaels, Robert E. "Title VII: A Major Step Forward," 8-10. Nelson, John. "Changes in the Rehabilitation Act of 1973 and Federal Regulations," 4-8. Smith, Quentin, Lex Frieden, Laurel Richards, and Laurie Gerken Redd. "Improving Management Effectiveness in Independent Living Centers through Research and Training," 30- 36. Tate, Denise and Julie Daugherty. "The Effects of Insurance Benefits Coverage: Does It Affect Persons with Spinal Cord Injury?" 19-22. Westbrook, John D. "Consumer-Driven Supported Employment: Consolidating Services for People with Significant Disabilities," 14-18. Ziegler, Martha. "How Parent Networks Are Working with Independent Living Centers," 39-42. In a special issue on rural independent living in the Rural Special Education Quarterly 11, no.1 (1992): Clay, Julie Anna. "Native American Independent Living," 41-50. Curl, Rita M., Shanna M. Hall, Linda A. Chisholm, and Sarah Rule. "Co-workers as Trainers for Entry- level Workers: A Competitive Employment Model for Individuals with Disabilities," 31-35. Nosek, Margaret. "The Personal Assistance Dilemma for People with Disabilities Living in Rural Areas," 36-40. Potter, Carol G., Quentin W. Smith, Huong Quan, and Margaret A. Nosek. "Delivering Independent Living Services in Rural Communities: Options and Alternatives," 16-23. Richards, Laurel and Quentin Smith. "Independent Living Centers In Rural Communities," 5- 10. Seekins, Tom, Craig Revesloot, and Bob Maffit. "Extending the Independent Living Center Model to Rural Areas: Expanding Services through State and Local Efforts," 11-15. Smith, Quentin W., Carl E. Fasser, Stacy Wallace, Laurel K. Richards, and Carol G. Potter. "Children with Disabilities in Rural Areas: The Critical Role of the Special Education Teacher in Promoting Independence," 24-30. We Won't Go Away, videocassette. Sells for $20 each, including postage, from the World Institute on Disability, 510 16th Street, Suite 100, Oakland, CA 94612 (510) 763-4100 (v), 208- 9493 (TTY). The Disability Rag. A bi-monthly publication reflecting ideas and discussions in the disability rights movement. Available at $12 for a one-year subscription. Write to: Subscriptions, The Disability Rag, 1962 Roanoke Ave, Louisville, KY 40205 (502) 459-5343 (v/TTY/fax). Most of the readings cited above can be obtained from resource clearinghouses. Several are listed below and can be reached for further information about publications and modem-accessible databases by mail or telephone. National Clearinghouse of Rehabilitation Training Materials, Oklahoma State University, 816 West Sixth Ave., Stillwater, OK 74078 (800) 223-5219. National Rehabilitation Information Center (NARIC), 8455 Colesville Road, Suite 935, Silver Spring, MD 20910 (800) 346-2742 (v), 227-0216 (TTY). ERIC Clearinghouse on Disabilities and Gifted Education (formerly the ERIC Clearinghouse on Handicapped and Gifted Children), 1920 Association Dr., Reston, VA 22091, (800) 328-0272 (v/TTY) at the Council for Exceptional Children, (703) 620-3660, ext. 307 (v). ILRU also offers a number of publications and other materials on various independent living subjects. For a listing of resource materials contact ILRU at 2323 S. Shepherd, Suite 1000, Houston, TX 77019, (713) 520-0232 (v), 520-5136 (TTY). For resource materials and technical assistance on the Americans with Disabilities Act, there are ten regional Disability and Business Technical Assistance Centers (DBTACs). One toll-free number, 1-800-949-4232, will direct your call to a technical assistant in your region. Resource materials are published by the U.S. Department of Justice and many are available free of charge. The Southwest DBTAC in Houston, Texas offers technical assistance and some resource materials in Spanish as well as English. Revised 6/95 Developed by the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living subjects may be directed to the IL NET Project, c/o ILRU at (713) 520-0232 (v), 520-5136 (TTY), 520- 5785 (Fax), or NCIL at (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (Fax). ACKNOWLEDGMENTS The contents of this manual have come from a variety of sources--chapters in books, articles in magazines, sections of training manuals, and so forth. The authors and publishers of these documents have given us permission to reprint them for use in this training program. For their generosity, we are very grateful. SYSTEMS ADVOCACY "The Bootstrap Solution." Copyright 1985 by The Disability Rag. Disability Pride: The Interrelationship of Self-Worth, Self-Empowerment, and Disability Culture. By June Isaacson Kailes. Copyright 1993 by the ILRU Program. "Oh Mona Lisa, I Never Thought of You as Disabled," by William G. Stothers. Copyright 1994 by Mainstream, Magazine of the Able-Disabled, the national magazine for people with disabilities. Reprinted with permission. Mainstream provides essential reading on recreation, travel, social and political issues, new products, technology, employment and education. One- year subscription $24. Sample copy $5.00. Also available on computer disk (ASCII) and on audio cassette tape. Write: Mainstream, 2973 Beech Street, San Diego, CA 92102. "A Little History Worth Knowing." Adapted by June Isaacson Kailes from Timothy Cook, 1995. "The Role of Independent Living Centers in Promoting Civil Rights for Persons with Disabilities." Originally published in ILRU INSIGHTS, Vol. 17, Nos. 3 & 4, 1989, ISSN 9733-1953. "A Practical Guide to the IRS Rules on Lobbying by Charities" by Gregory L. Colvin, Esq., and prepared for the Liberty Hill Foundation Workshop. Copyright 1993 by Silk, Adler & Colvin. TAKING CHARGE LEADERSHIP AND SYSTEMS ADVOCACY EVALUATION February 10-12, 1997 1. Describe your basic understanding of these workshop topics BEFORE and AFTER this workshop by circling the appropriate numbers below (a 7 being "high, detailed knowledge" and a 1 being "none"). BEFORE AFTER Advocacy definitions 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Oppression 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Power 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Advocacy: reality or rhetoric 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Leadership 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Planning 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Services 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Training 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Lobbying 1 2 3 4 5 6 7 1 2 3 4 5 6 7 Funding systems advocacy 1 2 3 4 5 6 7 1 2 3 4 5 6 7 2. What parts of the workshop/training did you find MOST helpful? Why? 3. What parts of the workshop/training need to be IMPROVED? Why? 4. Was the use of overheads helpful? YES NO Comment: 5. What aspects of this leadership and advocacy training that you would like to see expanded in future workshops? Name/phone (optional): 1.In this article, the term "charity" is used as shorthand for an organization exempt from tax under Section 501(c)(3) of the Internal Revenue Code, which covers religious, charitable, educational, scientific and literary organizations, as well as those that test for public safety, foster national or international amateur sports competition, and prevent cruelty to children or animals. (Note: The treatment of private foundations under the lobbying rules is beyond the scope of this guide.) Copyright 1993 Silk, Adler & Colvin 2.42 F.2d 184 (2nd Cir. 1930). 3.In contrast, activities to support or oppose political candidates are completely prohibited for 501(c)(3) organizations. 4.227 F.2d 907 (6th Cir. 1955). The organization had expended no money on lobbying, just the time and effort of volunteers. 5.E.g., Christian Echoes National Ministry, Inc. v. United States, 470 F.2d 849 (10th Cir. 1972), cert. den. 414 U.S. 864 (1973). 6.Kuper v. Commissioner, 332 F.2d 562 (3d Cir. 1964), cert. den. 379 U.S. 920 (1964). 7.E.g., the Sierra Club. 8.Organizations exempt under 501(c)(4) (social welfare), 501(c)(5) (labor unions) and 501(c)(6) (trade and professional associations), which cannot receive tax-deductible charitable donations, may lobby in furtherance of their exempt purposes without any limitation. 9.Internal Revenue Code 501(h)(7). 10.For example, a larger charity with a $2 million budget would have an overall lobbying limit at an effective rate of 12.5%, and its grass roots limit would be 3.125%. 11.IRC 4911(f). 12.Use IRS Form 4720 to report and pay the excess lobbying tax. 13.McGovern, Accettura and Walsh Skelly, "The Final Lobbying Regulations: A Challenge for Both the IRS and Charities," Tax Notes, September 3, 1990, pages 1305-06. 14.Charities lobbying on these confirmation votes may be subject to the tax on political organizations under IRC 527. 15.Until the final 1990 version of the regulations, the position of the IRS had been that ballot measure activity should be treated as grass roots lobbying, subject to the 5% limit. However, the IRS was persuaded to give charities the benefit of the higher 20% direct lobbying limit, since ballot measures could fit under either definition in the 1976 law. See Colvin, "A Suggested Approach to Ballot Measure Lobbying by Public Charities," Tax Notes, March 12, 1990, page 1307. 16.IRC 4912. This penalty tax scheme, which is effective beginning in 1988, does not apply to churches and church-related organizations. ---------- End of Document