IL NET an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement SYSTEMS ADVOCACY: USING YOUR POWER TO EFFECT CHANGE Participant's Manual April 5-6, 2001 Philadelphia, PA Contributors to the training materials: Carri George Richard Petty Dawn Heisohn Anne-Marie Hughey Kristy Langbehn Darrell Lynn Jones Raweewan Buppapong Maria Dibble Courtland Townes III Corey Rowley (c) 2001 IL NET, an ILRU/NCIL Training and Technical Assistance Project ILRU Program NCIL 2323 S. Shepherd Street 1916 Wilson Boulevard Suite 1000 Suite 209 Houston, Texas 77019 Arlington, Virginia 22201 713-520-0232 (V) 703-525-3406 (V) 713-520-5136 (TTY) 703-525-4153 (TTY) 713-520-5785 (FAX) 703-525-3409 (FAX) ilru@ilru.org 1-877-525-3400 (V/TTY - toll free) http://www.ilru.org ncil@ncil.org http://www.ncil.org 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: an ILRU/NCIL National Training and Technical Assistance Project. IL NET is funded through a special provisions cooperative agreement with the U.S. Department of Education, Rehabilitation Services Administration, Agreement No. H132B99002. Systems Advocacy: Using Your Power to Effect Change April 5-6, 2001 Philadelphia, PA Participant's Manual Table of Contents Agenda i About the Trainers ii List of Trainers and IL NET Staff iv About ILRU vi About NCIL vi About IL NET vii Section 1: Frequently Asked Questions About Lobbying and CILs 1 Section 2: Southern Tier Independence Center Advocacy Resources 8 Section 3: Utah Legislative Coalition for People with Disabilities Advocacy Resources 49 Section 4: Boston Center for Independence Living Legislative Advocacy Training Program 101 Section 5: Other Resources 129 SYSTEMS ADVOCACY: USING YOUR POWER TO EFFECT CHANGE AGENDA Thursday, April 5, 2001 9:00 - 9:05 Welcome and Introductions 9:05 - 9:45 Using a Values Statement to Keep Advocacy Efforts on Track 9:45 - 9:55 Defining Systems Advocacy: Introduction to Group Activity 9:55 - 10:15 Small Group Activity to Define Systems Advocacy 10:15-10:45 Break 10:45-11:15 Groups Report Out and Summary of Conclusions 11:15-12:00 Grassroots Organizing ( What it is. ( How to get consumers involved. ( How to train consumers. 12:00-1:30 Lunch on your Own 1:30 - 3:00 Coalition Building ( Utah Coalition ( Disability Policy Consortium ( Ad hoc networks 3:00 - 3:30 Break 3:30 - 4:00 Components and Tools for Systems Change 4:00 - 5:00 ( "Advocacy Action Meeting" Model ( Civil Disobedience ( Rallies Friday, April 6, 2001 9:00 - 9:30 Feedback from Day One 9:30 - 10:15 Packaging Your Message 10:15-10:45 Break 10:45-11:30 Small Group Activity - Designing Strategies for Different Advocacy Scenarios 11:30-12:00 Groups Report Out 12:00- 1:30 Lunch on Your Own 1:30 - 2:30 Candid Discussion With Policy Makers 2:30 - 3:00 Q&A With Policy Makers 3:00 - 3:30 Break 3:30 - 4:30 Tying it All Together ABOUT THE TRAINERS Maria Dibble is a graduate of Binghamton University with a B.A. in Sociology and is one of the founders of Southern Tier Independence Center in Binghamton, New York. She has been its Executive Director for the last seventeen years and is also Chairperson of the Association of Independent Living Centers in New York. Maria has also just been re-elected to serve another three-year term on the New York Statewide Independent Living Council. Maria has either led or participated in several major advocacy efforts, and was especially active in working for passage of Consumer Directed Personal Assistance legislation in New York (a three-year effort). As an advocate she has organized and built coalitions with other groups; coordinated and led protest rallies, lobbied on the local, state and federal levels; researched and written position papers; and developed long term strategic advocacy plans. Corey Rowley is the Executive Director of the Utah Statewide Independent Living Council and the past chair of the Utah legislative Coalition for People with Disabilities. In that position, she authored, negotiated, organized and advocated for disability rights legislation in the Utah State legislature. Corey is a board member of the National Council on Independent Living, Senate coordinator for the Drive for 75, and vice chair of the newly formed NCIL Health Care Committee. Corey is the chairperson for the NCIL Assistive Technology Committee, and during the reauthorization of the Tech Act, she was active in the national debate and was invited to present testimony to the Senate Labor Relations and Human Resources Committee. In the 1998 elections, Corey ran for a seat in the Utah State Senate. Courtland Townes III is Acting Co-Executive Director of the Boston Center for Independent Living. He has served as the Chair of NCIL's Civil Rights Task Force for the last five years and was the recipient of NCIL's 1999 Regional Advocacy Award. Courtland is committed to developing strategies to realize the dream of full participation by all people with disabilities. LIST OF TRAINERS AND IL NET STAFF TRAINERS Maria Dibble Southern Tier Independence Center 24 Prospect Avenue Binghamton, New York 13901 607-724-2111 (V/TTY) 607-722-5646 (fax) mdibble@stic-cil.org Corey Rowley Utah Statewide Independent Living Council 1800 SW Temple, Suite 317-Box 47 Salt Lake City, Utah 84115 801-463-1592 (V/TTY) 801-463-1683 (fax) clrowley@uswest.net Courtland Townes III Boston Center for Independent Living 95 Berkeley Street, Suite 206 Boston, Massachusetts 02116 617-338-6665 (V) 617-338-6662 (TTY) 617-338-6661 (fax) IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Carri George Program Director Publications Coordinator richard.petty@bcm.tmc.edu cgeorge@ilru.org Laurel Richards Dawn Heinsohn Training Director Materials Production Specialist lrichards@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (FAX) ilru@ilru.org http://www.ilru.org NCIL Anne-Marie Hughey Executive Director hughey@ncil.org NCIL 1916 Wilson Boulevard Suite 209 Arlington, VA 22201 703-525-3406 (V) 703-525-4153 (TTY) 703-525-3409 (FAX) 1-877-525-3400 (V/TTY - toll free) ncil@ncil.org http://www.ncil.org Kristy Langbehn Project Logistics Coordinator kristy@ncil.org Darrell Lynn Jones Training Specialist darrell@ncil.org Raweewan Buppapong Project Assistant toony@ncil.org 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. 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 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 THE IL NET This training program is sponsored by the IL NET, a collaborative project of the Independent Living Research Utilization (ILRU) of Houston and the National Council on Independent Living (NCIL). The IL NET is a national training and technical assistance project working to strengthen the independent living movement by supporting Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs). IL NET activities include workshops, national teleconferences, technical assistance, on-line information, training materials, fact sheets, and other resource materials on operating, managing, and evaluating centers and SILCs. The mission of the IL NET is to assist in building strong and effective CILs and SILCs which are led and staffed by people who practice the independent living philosophy. The IL NET operates with these objectives: ? Assist CILs and SILCs in managing effective organizations by providing a continuum of information, training, and technical assistance. ? Assist CILs and SILCs to become strong community advocates/change agents by providing a continuum of information, training, and technical assistance. ? Assist CILs and SILCs to develop strong, consumer-responsive services by providing a continuum of information, training, and technical assistance. SECTION 1 FREQUENTLY ASKED QUESTIONS ABOUT LOBBYING AND CILS (Revised 3/98) 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 This FAQ addresses lobbying questions which have been raised during our training programs, technical assistance calls and consultant work. It was originally developed in May 1997. We have just revised it in response to amendments made to OMB Circular A-122. In developing this FAQ, a study was conducted of pertinent regulations of the Internal Revenue Service and the Department of Education, and then the answers were reviewed with an attorney specializing in lobbying issues and with John Nelson, chief of Independent Living Branch of Rehabilitation Services Administration and other officials of the Department of Education. We hope you find this FAQ useful, and we welcome any recommendations for improving it that you care to offer. 1. Are centers for independent living allowed to lobby? Yes, CILs may lobby; however, 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 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 (as amended in August 1997) when awarding federal funds. Additional restrictions may be found in Department of Education regulations 34 CFR Part 82. 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 non-profits 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? Except as described in #5 below, CILs that receive Title VII funds are restricted from using Title VII as well as other federal funds to engage in lobbying activities. However, as stated above, centers may use non-federal funds to engage in lobbying activities. 4. What lobbying activities may not be supported with federal funds? Briefly, lobbying activities which may not be supported with federal funds include: • Attempts to influence the outcome of any federal, state, or local election, referendum, initiative, or similar procedure; • Supporting in any way a political party, campaign, political action committee, or other organization established for the purpose of influencing the outcome of elections; • Any attempt to influence the introduction, enactment, or modification of federal or state legislation, including efforts to utilize state or local officials to engage in similar activities; • Any attempt to influence the introduction, enactment, or modification of federal or state legislation by trying to gain the support of part or all of the general public; • Legislative liaison activities in support of unallowable lobbying activities; • Any attempt to influence an executive or legislative branch official with respect to any grant, contract, loan, or cooperative agreement. It is important to note that activities that may not be supported by a center's federal funds may be supported by its non-federal funds. 5. What lobbying activities may be supported with federal funds? Non-restricted lobbying activities (that is, those lobbying activities which can be supported with federal funds) include: • Providing a presentation through hearing testimony, statements, or letters in response to a documented request, if the information needed for the presentation is readily available. Costs for travel, lodging, and meals are not allowed unless testimony is given in response to a written request from the chairman or ranking minority member of a Congressional committee or subcommittee; • 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; • Any activity specifically authorized by statute to be undertaken with funds from the grant, contract, or other agreement. 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 yet record-keeping demands for day-to-day lobbying activities are virtually the same. 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 or 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 to inquire about resource materials he has developed regarding lobbying and the tax code. Other sources include Independent Sector (1828 L, N.W., 1200, Washington, D.C., 20036; 202.223.8100); Alliance for Justice (2000 P St., N.W., Suite 712, Washington, D.C. 20036; 202.822.6070); and Chronicle of Philanthropy, (1255 23rd Street, N.W., Suite 700, Washington, D.C.; 202.466.1200). 9. How does the Lobbying Disclosure Act of 1995 affect centers? In most cases, it doesn't. Centers which attempt to influence Congress or top federal executive branch officials may be required to register, to report their areas of interest, and to specify the amount of money spent on lobbying activities. A center is required to register under the Act only if: 1) an individual employed or retained by the center makes more than one contact and spends 20 percent or more of his or her time providing lobbying activities for the center during a six month period; and 2) the center's total expenses in connection with lobbying activities exceed $20,000 in a six month period. 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.whitehouse.gov/WH/EOP/OMB/html/circulars/a122/a122.html ? For the Internal Revenue Code (P.L. 94-455), the address is www.law.cornell.edu/uscode/26/4955.html ? To find a copy of the Lobbying Disclosure Act of 1995 (P.L. 104-65), and other federal legislation, go to the Thomas homepage at http://thomas.loc.gov, probably the best springboard into everything from public documents to the inner workings of Congress. CONCLUSION As you know, advocacy is one of the core services of a center, essential to achieving the mission of promoting independent living opportunities for persons with disabilities. This said, among questions most often heard by IL NET trainers and technical assistants are what constitutes advocacy and what distinguishes it from lobbying? This FAQ is intended to provide the basics. If you need more information, be sure to contact an attorney or your grantor agency. 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, Sergio Kapfer, Department of Education General Attorney, Division of Educational Equity and Research, and Susan Winchell, Department of Education Ethics Counsel Staff for agreeing to review these responses. The IL NET is a collaboration of Independent Living Research Utilization (ILRU) Program and the National Council on Independent Living (NCIL), 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. For additional copies of this FAQ, contact ILRU at (713) 520-0232 (V), (713) 520-5136 (TTY), (713) 520-5785 (FAX) or email at ilru@ilru.org or download it from our web site at http://www.bcm.tmc.edu/ilru/ilnfaqs.html. Copyright (c) May 1998 ILRU Program. Section 2 Southern Tier Independence Center Advocacy Resources ADVOCACY TOOL KIT By Maria Dibble There is nothing more important to the mission and philosophy of Centers for Independent Living (CILs) then advocacy and systems change. Each one of us, as an employee, consumer, volunteer or board member of a center, can and must promote and actively work for the integration and inclusion of all people with disabilities into all aspects of our communities. Equality, justice, empowerment, dignity, independence, rights, choice, should not just be buzz words, they should be integral components of the policies and issues we propose and/or support. Advocacy can take many forms, including: a phone call or letter to a legislator; attending or organizing a rally; testifying at a public forum; joining a coalition; participating in a civil disobedience. Usually, in a well organized, long-term advocacy effort, a combination of many or all of these strategies will be used to achieve success. Not everyone will be comfortable with every tactic, and no one should be pressured or intimidated into engaging in activities which make them feel uneasy. There is more than enough work to go around, and no one action is more or less important than another. ADVOCACY & TOOLS AND TACTICS A. Phone Tree Having a way to share important information at a moment's notice is one of the most essential components of successful advocacy, and the phone tree is a basic but effective mechanism for sharing Information. Dozens of advocates can be reached quickly by making 2 or 3 phone calls to individuals who will then call 2 or 3 others. Just about everyone has a phone, and this approach allows consumers and interested others to participate in an advocacy effort without leaving their homes or spending a lot of money. It is also an excellent strategy for getting new members of the community involved, empowering people and recruiting individuals to your cause who are experienced and interested in a more active role. Appoint a phone tree manager to take responsibility for organizing and managing the phone tree. Volunteers are needed to be the "branches" and "leaves" of the tree. The manager will construct the phone tree so he or she can make 4 or 5 phone calls to "branch" volunteers who will then call and share the information with 4 or 5 "leaf" volunteers. Leaf volunteers have no responsibility for making calls within the tree structure, they choose only to receive information and act on it. Whenever someone has important information that must be spread right away, he/she will contact the phone tree manager who will start the phone tree working. Volunteers can also help by offering free use of a phone to other volunteers, especially when long-distance calling is necessary. Similar trees can be developed for faxing information or emailing, with these two options having the advantage of reaching many more individuals with one fax or email. Most fax machines and email programs allow the establishment of "groups" which can be comprised of all those interested in a specific issue. When a fax/email is sent to the group, it will automatically include everyone on the list. B. Phone Campaigns Now that your phone tree is established, here is one good way to put it to use. A very effective strategy for getting the attention of lawmakers and other public officials, is to organize and conduct a phone campaign. Here is how it works: 1. Select a date, perhaps two weeks in the future, on which people from around the state will make calls to a specific lawmaker or public official with a specific message. 2. Activate the phone tree, email tree, etc. and get the word out about the date and message. Make the message very brief. 3. Circulate the information to as many groups as possible, and encourage them to send it out to their contacts as well. 4. Send reminders out to people one or two days before the event. 5. This approach is very effective, tying up the phone lines of your target for the entire day. It should not be a tactic that is used frequently against one individual, but should rather be well considered, after several other strategies have been tried. It can, and probably will, annoy the office workers who must take all the calls, but that can't be helped. 6. Similar approaches can be taken by using the mail, such as a postcard campaign where thousands of people send postcards to a lawmaker saying please support bill 1234, etc. This works best if people write a brief personal message on the postcard before mailing it. 7. You can be creative too. Send valentines on Valentine's Day saying "Add $x to CIL funding to give the budget some heart," and the like. Example of a Successful Phone Campaign Consumers, advocates and disability rights organizations were trying to convince NY's Attorney General not to sign onto "the good brief" which supported our issues related to the Garrett ADA Supreme Court case. We couldn't get a commitment or even a response. We chose a day, and people from all over the state bombarded the District Offices of the Attorney General with phone calls asking him to sign on to the brief we favored. By the end of the day, one of the lead advocates got a call from a key aide saying, "What the hell is going on. Our offices have been practically shut down today from all these calls." Not too long after the event, the Attorney General signed onto the brief. We generated hundreds of calls, showing the AG that we have a well established network and that we are a strong and viable constituency warranting his attention. C. Letters to Legislators Letters to local, state and/or federal officials are an excellent way to voice concerns about policy issues, including budget proposals, pending legislation or regulations, etc. Be assured that these letters are read and recorded as being pro or con on an issue. Individual letters are far more effective than form letters or petitions. Anyone can write a letter. They don't have to be long or complicated, they just need to be clear and direct. Below are some suggestions for an effective letter: 1. State your most important points first. 2. If possible, refer to pending bills by number (i.e. Assembly bill 1234, Senate bill 5678). If the issue is not a bill yet, try as much as possible to refer to the issue by name (i.e. "Governor's proposed budget", "Medicaid Buy-In Bill"). 3. Make it very clear what you support and/or oppose. Do not beat around the bush. 4. Describe exactly how it would affect your life or the lives of people with disabilities if the proposals you agree with or oppose are implemented. 5. If you are specifically effected by the issue, give as much detail as possible. For example: If home care cuts are being proposed in your state, saying things in your letter like, if these cuts are enacted: "I would Not be able to get out of bed in the morning."; "I would not be able to bathe or use the toilet as much as I need to."; "I would develop bed sores and other possible medical problems."; "I would only be able to have one meal a day."; "I would have to quit my job"; "I would end up in a nursing home."; etc. 6. Tell the lawmaker exactly what you want him/her to do. Example: Please support bill number 1234; do not allow the proposed home care cuts to pass; support a 75 million dollar increase in federal funds for CILs; etc. 7. If possible, offer an alternative to what is being proposed, which might achieve similar results but which would be less harmful to you or consumers. 8. Be clear, concise and accurate. Following are two sample letters to legislators using home care as an issue. Sample Letter 1 [date] The Honorable [name] Address Dear [Legislator's Name] I'm writing on behalf of (agency or organization name) to express my grave concern about the Governor's proposed cuts in home care services in the recently released budget. If the cuts are enacted, many people with disabilities will be forced into nursing homes, will experience significant health problems and will no longer be able to work or live independently. I'm a person with a disability and a user of home care services, and I strongly oppose these cuts. Without these essential services, I would not be able to bathe, use the toilet, eat a hot meal, or get out of bed to go to work in the morning. Home care services are not a special privilege or a mere convenience, they are crucial components of my ability to live independently and be a contributing member of the community. The cuts in home care do not make fiscal sense. Home care, on average, is a third of the cost of nursing home care, and allows people with disabilities to be productive members of society, paying taxes, making purchases, etc. Please oppose these home care cuts. Instead, assist us in promoting and passing legislation to establish Consumer Directed Personal Assistance (CDPA) in our state. CDPA has proven to be extremely cost-effective, saving taxpayers millions of dollars while giving people with disabilities the ability to hire, train and schedule their own attendants. The savings are achieved because of reduced nursing visits, and lower administrative overhead (allowing for a somewhat lower hourly rate.). I would appreciate the opportunity to discuss these issues with you in person as soon as possible. If you have any questions, please feel free to contact me. Thank you very much for your time and attention. Sincerely, Sample Letter 2 Date Address Dear (name): I'm writing to ask that you oppose the Governor's proposed cuts in home care, and to urge you to help restore the money. I have a physical disability and need help to get in and out of bed, bathe, dress, eat, use the toilet, etc. If these cuts go through, my spouse will have to quit his/her job to assist me with these tasks. Thank you for your assistance. Sincerely, D. Building Coalitions Never doubt the old sayings, "There is power in numbers," and "The squeaky wheel gets the grease." One of the most effective strategies for advocating on a complex issue (especially those that will be more long-term in nature) is the development of a comprehensive coalition. Such a coalition would be issue-based, and would only remain in tact for as long as the issue is unresolved. Below are some suggestions on how to form and maintain a coalition: 1. Contact individuals (consumers, family members, etc.), agencies, organizations, etc. in your community which have a stake in disability rights/issues and community-based services, and/or will be affected by or have an interest in the issue. 2. Keep an open mind! Remember that those who may have been your adversaries previously on a different issue, could very well be an ally this time around. 3. Call an organizing meeting to get the coalition off the ground. 4. Develop a brief mission statement for the coalition (one-two paragraphs), as well as letterhead of some kind listing all of the members. This is important since the mission statement will make it easier to recruit new coalition members and the letterhead will show broad-based support for your issues. 5. Develop a policy/position paper for the coalition which: defines the issue concisely; outlines your concerns with the issue; lists alternative proposals/solutions; and lays out your specific demands in detail. Make sure that the information and sources you use are reliable and credible. Supporting budgetary or statistical data are extremely valuable if you can get accurate information. Sometimes data is not available in the format you need, but a logical extrapolation to attain desired figures is acceptable, as long as you briefly describe how the figures were derived. For example, you know that $x millions have been spent on home care over the last year, and that x number of people have received x hours of service. From this you can glean average cost per hour, average hours per person, average cost per person, etc. 6. When writing the paper, keep in mind who your audience is (legislators, state or federal agency representatives, etc.) and use terminology/language to which they can relate. For example, if the target is conservative legislators, then emphasize costs, savings, fiscal responsibility, reducing dependence on government dollars, etc. Of course you should also include the quality-of-life, equal rights and other issues near and dear to our hearts, but you might not want to make them your major focus. After all, remember, the reasons legislators or policy-makers support an issue isn't important, only the fact that they will fight for our cause and help us to achieve our goals really matters. If congressman ABC votes for downsizing nursing homes because it saves money, rather than because it frees thousands of people with disabilities from imprisonment in an institution, does it really make a difference? The bill passes, downsizing will happen and both he and people with disabilities benefit from the results. 7. Once the paper is completed, circulate it widely to anyone with even a remote interest in the issue. Set up meetings with key legislators, etc. and discuss the paper in detail. Give them at least two weeks to review the paper before scheduling the meeting. 8. Plan a strategy for getting your ideas adopted into law. Review all options from phone calling campaigns to civil disobedience and develop a schedule of potential events/activities. 9. In developing your strategy, define the points and principles upon which you absolutely cannot compromise (your bottom line). Also discuss the points that you could give up and the areas on which you can negotiate, so that you can be prepared later on down the road. However, always begin your advocacy efforts asking for the ideal, the compromising should not happen until you are truly sure the opposition will not bend on their position. EXAMPLE OF A SUCCESSFUL COALITION About ten years ago, New York's Governor proposed very significant cuts to home care, which would have been extremely detrimental to people with disabilities. The Association representing the majority of CILs in the state, took the following steps to fight the cuts and to implement some much needed reforms: 1. We contacted consumers, family members/friends, etc.; disability rights organizations; CILs; organizations representing disabled veterans; agencies serving children and senior citizens; unions representing home care workers; home care providers; etc. and invited them to a meeting. 2. We laid out the Governor's proposal, our concerns and our goals for the coalition. 3. We obtained a commitment from attending members to either support or actively participate in the coalition (the goal being to get as many names on our letterhead as possible to show a very broad base of support for our agenda). 4. We chose the name "Long Term Care Action Coalition" (LTCAC), and developed a mission statement and statement of principles to be used in publicizing our group and recruiting new members. (Both statements can be found at the end of this section on Coalition Building.) We also decided to call the "continuum of home care services" "Personal Assistance Services" (PAS) to better reflect our position on the issues. 5. Over the course of several months, we researched different PAS models across the country, gathered data on the cost of various programs in NY, selected and/or modified the models which best fit our philosophy, and wrote/amended/finalized our position paper. 6. We then circulated our paper to all pertinent legislators and government officials, including: Governor's key staff; Chairs and members of the Senate and Assembly Committees on health, Social Services; Aging; Finance; etc.; Department of Health; Department of Social Services; Division of the Budget; etc. 7. We arranged meetings with key legislators and began a two-year effort to fight cuts while educating them about our issues and proposals and implementing reforms. 8. The Governor's office requested a meeting with us to follow-up on our paper and to get our input on other PAS related policies. 9. Our paper was very well received by everyone. We heard comments regularly to the effect that "I may not agree with everything in this paper, but it shows an extensive effort to outline the issues and to present reasonable alternatives to the current system." Statements like this demonstrated to us that we had established strong credibility with legislators, and that they would not lightly ignore our concerns. 10. We managed to stave off cuts in the first year, and by the end of the second year were successful in passing legislation to establish a permanent Consumer Directed Personal Assistance Program in the state. Additionally, Since then, no governor has proposed any home care cuts which would have a detrimental effect on consumers. 11. There were times when our efforts seemed fruitless, like we'd never get the legislation introduced or adopted, but it was then that we would implement phone and letter writing campaigns, conduct rallies, hold press conferences, etc. 12. One of the most memorable events, and a turning point in our advocacy efforts, was a day when we held a press conference on our concerns. Almost no media showed up, and those that did told us that the Governor was holding a press conference which conflicted with ours. About 30 of us decided to take our issues to the Governor. We waited outside the room until his press conference was over and then told one of his staff that we wanted to speak with the Governor. Meanwhile, we were surrounded by the media, who were eager to hear our concerns. To our surprise, the Governor came out to talk with us. One of our members, a significantly disabled person who used a service dog and who was an outstanding advocate, went up to the Governor and handed him a ring of keys, saying, "You might as well take these, because if your cuts go through, I won't need them. They are the keys to my apartment, office, and van, but without home care I won't need those things because I'll be in a nursing home. It was a very powerful moment, capturing the imagination of the media, and making the Governor speechless (a state he seldom experienced). The next day, the Governor rescinded his proposal to cut Home Care and later in the session CDPA was past and signed into law by the Governor. MISSION STATEMENT The Long Term Care Action Coalition (LTCAC) is comprised of advocates from around the state including representatives of senior citizens, children, independent living centers, people with AIDS, people with Alzheimer's, and more. We provide a means by which the people most affected by long-term care--the people who use it--can bring about state-of-the-art Personal Assistance Services (PAS) that meet the needs of New Yorkers of all ages with all disabilities and chronic diseases (including cognitive impairments and limitations). To that end we research and recommend ideas for regulatory reform, innovative service models, and public education strategies. Statement of Principles The Long Term Care Action Coalition asserts that the following principles are essential to a comprehensive consumer-responsive and -controlled personal assistance services program. 1. PAS is necessary for society as a whole, because it enables senior citizens, children, and people with disabilities and chronic diseases (including cognitive impairments and limitations) to lead productive lives in the community, and avoid dependence on welfare and institutional programs. PAS is a right, not a privilege. 2. As the Americans with Disabilities Act asserts, no individual should be forced into or kept in an institution due to lack of resources, high costs, substandard or non-existent services or arbitrary eligibility limits. 3. All PAS users should have the right to appeal service decisions. 4. PAS will serve people of all ages, from infancy on, when the person's functional and/or cognitive limitation(s) necessitate the services. 5. PAS services will be provided in any setting deemed appropriate by consumers to facilitate participation in all aspects of community life. 6. PAS users, or their chosen representatives where applicable, will be advised of and educated about the entire continuum of PAS services available so that they can make informed choices and be active partners in the provision of services. 7. PAS users, or their chosen representatives where applicable, will be able to select from a variety of PAS models which together offer a choice of various degrees of user control. 8. All information about PAS services, options and procedures, as well as consumers' rights and responsibilities, will be available in accessible formats and appropriate languages. E. Meeting with Public Officials People with disabilities and their families don't have the money that big lobbies (like nursing homes, the state employees' union, hospitals, etc.) do. But we do have our stories and our "people power". One of the best ways to use this is to meet with our public officials. Here are some tips: 1. Identify officials with the power to do what you want (end institutionalization, preserve community services, etc.). They may be federal senators or representatives, state senators or assembly persons, the Governor, or people who run the state budget office or state agencies. Check with your state legislature to see if they have a directory of representatives. The directory will probably include telephone, fax, email and address information, along with who chairs or sits on which committees. This information is usually also available online. 2. Set up a meeting with the official or an aide. Often, the aides do the work anyway and are therefore more knowledgeable, so don't be discouraged if you can't see the legislator. Aides are usually very good about conveying information to the representative. 3. Plan your presentation and bring supporting documentation/data (brochures, policy/position statements, etc.). Do not assume they know who you are, who you represent or what the impact of the issue is on you or the people you represent. Most legislators will give you only about fifteen minutes, so be concise but informative. 4. Know the facts. Nothing makes a worse impression on officials than inaccurate information. If the official asks you a question and you don't know the answer, it is best to be honest and say as much, (it simply isn't possible to anticipate their questions or know every related fact and figure). However, make note of the question and tell them you'll get back to them with an answer. Follow-through is critical to develop and/or maintain credibility, so be sure that you'll be able to keep any promises you make. 5. If you are part of a large group or coalition, be sure all of you are delivering the same message. Then split up the list of officials who need to hear from you. It is best to have people visit the officials who represent the area where they live. But if no one in your group lives in a district represented by a key official you need to see--say the chair of the legislative committee that controls education funding--then you should send someone else knowledgeable about the issue. It is best to have at least two people attend the meeting, more if possible. Inform the appointment secretary of the number of participants so that they will have adequate space. It would be best to have people affected by the issue under discussion actively participate in the meeting, to tell their personal stories and how the issue will affect their lives. Also, send your most experienced and knowledgeable advocates to the meetings with key legislative chairpersons or others in leadership positions, since these are the people who will probably have the most impact on policies/legislation. 6. Remember, these people work for you. You vote them in (or out of office) and pay their salaries. Most of them know that, and will listen to you. They need to see, in person, the people affected by their decisions, and to know what effects their decisions have on people's lives. F. Public Forums Public forums are an effective way to focus attention on an issue, especially if media are present. Here are some tips: 1. The location must be physically accessible to people with disabilities. 2. Sign language interpreters must be provided for Deaf attendees. Even if no Deaf people sign up to testify, interpreters must be present if the event is open to the public. 3. All materials distributed at the forum should be available in a variety of alternative formats (including cassette tape, large print, computer diskette and Braille). 4. Hold the forum in the evening, or start late in the afternoon and run into the evening, so parents and working people can attend. 5. Invite pertinent officials to participate in the forum, by sitting on a panel to observe and listen to people's concerns. Panelist can be given three to five minutes to describe their positions on the issue under discussion, but do not allow them to make lengthy speeches or pander to the media. 6. Sponsorship by a coalition, rather than a single group, is most effective. Representatives of the member groups should hold several planning sessions before the forum. 7. Select a moderator who will keep things moving. This should be a person with a disability experienced in public speaking if possible. 8. Because the media usually come at the beginning of the forum, you should select spokespersons who agree to be interviewed, and begin with effective speakers who can address different aspects of the topic. 9. Make every effort to pack the room. A small room that is full is better than a large one that isn't; even better is a large room full of people who want to be heard. A coalition can help here. If several groups and agencies are involved, they will get people there. Also very important: Plan the forum with lots of advance notice--at least a month ahead. People have busy schedules, and for many people with disabilities, arranging transportation and attendants to get to a meeting is difficult and takes time. 10. Have sign-up sheets for speakers and for mailing lists for future activities. This is also a good time to get petition signatures (although remember, petitions aren't nearly as effective as individual, personalized letters). 11. Limit testimony to three to five minutes, and make sure the time limit is enforced. 12. Ask those who testify to also provide their comments in writing, on tape or in another format that is easy for them. Not all will be able to do this, but you will get at least a few. 13. Summarize each person's speech, and assemble written materials people submit, petitions, and any press clippings that result. You might also videotape the event (edit it down to a half-hour or so) and send the info to all pertinent local, state or federal officials. G. RALLIES AND PUBLIC DEMONSTRATIONS Another very effective tool in your advocacy arsenal is rallies/demonstrations. These are a way to get the attention of public officials and the media. Below are some suggested tips for a successful event: 1. Logistics: Make sure that you have materials in accessible formats; sign language interpreters for the event; a good Public address system; parking for event participants; volunteers to distribute literature to passersby. 2. Arrange the event with two-three weeks notice if at all possible, and distribute an announcement to as many people and agencies as you can. Make sure to include: date, time, location, parking info, and theme of event. 3. Hold the event in as public a location as possible, where you will be seen by officials as well as members of the public. 4. Obtain a permit to hold the rally from the appropriate entities (this could be the local police, city hall, etc.) depending on where the event is to be held. 5. Come up with a theme for the rally and be creative! For example, in fighting home care cuts in NY, advocates set up a mock hospital emergency room, with IV drip, gurney, blood pressure cuff, etc. We had people with disabilities transfer onto the gurney to be examined, because the lack of home care was causing many health problems for consumers. Rally participants carried signs indicating the various problems people with disabilities would experience if the cuts went through (examples: "bed sores", "poor nutrition", "bladder infections", etc.). It was held in our legislative office building, (by coincidence very near the first aide station). During the rally a nurse came over and started helping with the action by taking people's blood pressure. This was not planned, but made a great visual for the cameras! Additionally, we had exceeded the time for our permit and a police officer came to chase us away. When he heard what the rally was about, he said, "My mother uses home care. This isn't good." He then turned around and walked away. We also held a rally on the Capitol steps protesting cuts in state CIL funding. We used the theme of "keys" and had posters cut in the shapes of keys in bright florescent colors. The slogans on the signs were: "IL, Key to Independence"; "IL, Key to Jobs"; "IL, Key to Deinstitutionalization"; etc. We hung the keys on a string across the top of the steps, and they could be seen from a very long way off. The media loved it. 6. Send out press releases two or three days before the event, and then call the media to remind them on the day of the demonstration. Contact radio, television, cable access stations, newspapers, etc. 7. Have an MC for the event that can keep people shouting slogans and the crowd loud and energetic. It should also be a person who can adlib at a moment's notice, since there is almost always a speaker who either doesn't show, or who is late, etc. 8. If the event is sponsored by a coalition, make sure that different members have an opportunity to speak. You may also want key legislators to speak on the issue. As a rule, it is best to invite representatives from both parties to speak, even if one side is not a supporter. They will most likely not accept your invitation, or they will come and be forced to confront a crowd of constituents who oppose their positions, either way doing no harm to your cause. 9. Limit speeches to two or three minutes or you'll lose the press, and try to keep the entire event to 30-45 minutes. 10. Schedule your most prominent or important speakers first, since the media is more likely to be there at the beginning rather than the end of the event. 11. Make sure that there are lots of posters and visual displays, (the media loves this). 12. Bring press packets containing the press release, supporting documentation, brochures, etc. related to your issue and position. H. CIVIL DISOBEDIENCE ACTIONS Civil disobedience is different than a rally, since it is usually an illegal assembly intended to get the attention of the media and officials by attracting the police, disturbing the operation of an office or area, and creating enough of a disruption to possibly get arrested. It is not a tactic for everyone, but for those who are willing to participate, it can be a very empowering and energizing experience. Such activities as sit-ins (occupying an office and refusing to leave until you get some demand(s) met); creating a human chain across a road or key passageway in a building; etc. are examples of civil disobedience actions. Below are a few tips: 1. Decide who the target of your action will be (specific legislator, governor, etc.) depending on the issue. If no individual is the target, then decide on the best way to create enough of a public display to attract the police and the media. Remember, however, that civil disobedience should be peaceful, and that no violence should be encouraged or tolerated. 2. Decide on the type of action, where it should take place and how many people you need. A civil disobedience does not require a large crowd, in fact, many are successful with fewer than a dozen participants. 3. Make sure that participants know the risks of possible arrests, fines, or even spending a night in jail. While police tend to hesitate to arrest people with disabilities using wheelchairs, guide/service dogs, respirators, etc. you should not count on this. 4. Have an attorney and bale money arranged for before the event, lessening the chance of jail time. 5. Advise participants to bring along food and their medications (especially if they need to eat at certain times, etc.). It is recommended that medication be carried in its original bottle or package, or the police may seize the medicine as an illegal drug. Don't carry things like aspirin or other over the counter medication in unlabeled containers, since these too can be used as an excuse to charge the person with possession of an illegal drug. Of course, in the end, the charge would not stick, but it is just one method that can be used to hassle and frustrate participants. 6. In addition to the action participants, have a team of supporters who do not intend to be arrested in order to run errands, contact lawyers, alert media, etc. This logistical support is crucial! 7. The simpler the event/action, the easier it will be to pull-off. Examples: Gay rights activists virtually shut down the Division of Budget in NY, by getting two dozen people to stand in the hall blowing very loud whistles. Not only did they not get arrested, but they got all of their demands for that day met. Another idea could be to have people fill all of the elevators and ride up and down for the day, not allowing anyone else to use them. (This would be very effective in a Legislative building with many floors, on a day when meetings, public hearings and the like are taking place.) Most recently, ADAPT activists blocked the entrance and chained themselves to the door of the Governor's office, until the press secretary agreed to meet with them at a date within the next two weeks. They too did not get arrested, and the Governor's aide said he would arrange for the appointment if they would move out of the doorway. When activists agreed and began to withdraw, one aide tried to slam the door in their faces. One participant jammed is footplates in the door and activists expressed their anger at the aide's failure to keep his word. Finally, they began to negotiate in earnest. Eventually, their demands were met and the meeting did take place. I. INFILTRATION One of the most overlooked advocacy strategies is "infiltration", getting people with disabilities appointed to committees, boards, commissions, and the like. This doesn't necessarily need to be a staff person from a center. in fact, consumers can and do make excellent representatives, bringing the concerns of "the people" rather than your agency to the table. By the very presence of a disabled person at the meetings, people will become more aware of the need to be accessible, to offer materials in alternate formats, etc. Additionally, the disability perspective will be considered in all policy decisions, furthering our mission in a myriad of different venues. We also need to be a highly visible presence at public hearings, legislative sessions (at all levels), and other meetings open to the public. J. THE POWER OF THE WRITTEN WORD People tend to seriously underestimate the power of the written word in their advocacy efforts, (not press coverage) but rather editorials and articles in your newsletters or in other publications. The difference is that with these types of documents, you can control what is said and how. No one likes bad publicity of any kind, and government agencies and officials are especially susceptible to this approach. Years ago, my center was getting many complaints from consumers about our local VR Office, including: violations of confidentiality; lack of respect for consumer's choices; six to nine months delays in approvals for services; etc. I approached the VR office manager to discuss these and other issues, and he refused to cooperate or respond to us. I followed this with a long, rather scathing editorial in our agency newsletter describing the problems we and our consumers were experiencing. Shortly after the newsletter's publication, I received a call from a VR official from the central office in Albany. (In my editorial I actually said kind things about the central office staff because a new commissioner had just been appointed) and she proceeded to scream at me (literally at the top of her lungs) about my editorial. I was stunned, not because of her attitude, so much as her lack of foresight in letting me know how effective our editorial had been. She demanded a meeting with me and my board president (not knowing that my president was one of the people who had complained about her confidentiality being violated) and I readily agreed. In the end, the local office staff mutinied, (contacting central office and reporting even more problems than I'd outlined in my editorial). Significant changes occurred over the next year, services dramatically improved, a more cooperative attitude was evident with the local office management (we'd never had problems with the counselors and those consumers referred by my center were assured of more quality service in a more timely manner. Additionally, once we succeeded we printed a very positive editorial congratulating them for the changes. The editorial is reprinted on the following pages for your information. Note: The change to pitch (7) and font (1) must be converted manually.EDITORIAL - Note: The change to pitch (9) and font (1) must be converted manually.Is The Apple Rotten? Note: The change to pitch (6) and font (1) must be converted manually.Fall '89 Note: The change to pitch (10) and font (1) must be converted manually.SOUTHERN TIER INDEPENDENCE CENTER Binghamton, NY (607) 724-2111 Voice or TTY Did you ever have an apple that was all red and shiny, but then you cut into it and found it rotten? With some disappointment, you can toss the apple in the garbage and forget about it. Such an analogy can be drawn about the New York State Office of Vocational Rehabilitation (OVR), but the solution is, unfortunately, not quite as simple. As a result of numerous complaints over several years, the recently-appointed Commissioner of Education, Thomas Sobol, ordered a statewide survey of OVR employees, disability activists, consumers and service providers. The results of the survey were revealed in May. They indicated that almost half of OVR's own employees felt the agency was ineffective, and that over two-thirds of other service providers and advocates agreed with that assessment. Significantly, though there were no questions about management on the survey, 52% of surveys returned included comments criticizing OVR management. We applaud Commissioner Sobol's integrity and forthrightness in initiating this survey, as well as his decisive response to its results. On June 16, Sobol announced major OVR changes. He demoted the Deputy Commissioner in charge of OVR, Richard Switzer, and Switzer's assistant Betty Hedgeman, and sent them elsewhere in the Education Department. Lawrence Gloeckler was appointed Deputy Commissioner. All services will be reviewed, and the Office will be reorganized, according to Sobol. "We will put our house in order," he said. In June, in my capacity as Chairperson of the Association of Independent Living Centers in New York (AILCNY), I had the pleasure of meeting with Mr. Gloeckler and other OVR management staff. I was pleased at their apparent willingness to hold open discussions, hear our concerns and work toward some substantive changes and improvements in the system. Mr. Gloeckler has a tremendous task ahead of him, and we wish him the best of luck. We are sad to say, however, that when problems exist at an organization's top, the bad attitudes and habits often filter down to the bottom of the barrel. This is, unfortunately, the situation which has existed in our area for a long time. The problems with our local OVR office are very serious. Most of them directly affect services to consumers. OVR is notorious for taking anywhere from four months to a year to provide services to consumers. They regularly send people seeking jobs to sheltered workshops rather than competitive employment. Most unbelievably, they often deny services to people who are obviously eligible (thus involving consumers in long appeals procedures, further delaying their services). In the last few years, STIC has been very fortunate in getting several budget increases, including the very large one we got for the fiscal year just ended. As is our policy, most of those funds went to hire new staff. Each time we had an opening (nine last year alone), we sent job announcements to OVR. We hoped to get some qualified people with disabilities referred for the positions. As unbelievable as it may seem, we did not receive one referral from OVR for any of these jobs. I must note that none of the jobs required extensive education or work experience, and that, in an effort to ensure a response, we sent announcements to the manager and at least three other counselors. I find it very difficult to Note: The change to pitch (9) and font (1) must be converted manually.accept that they didn't have anyone to recommend. OVR, aren't you an agency "specializing in employment programs for people with disabilities"? If so, what were the placement counselors doing when we sent over our job descriptions? Moreover, OVR, as the major state agency providing employment services to people with disabilities, often refers people to STIC for employment assistance. Most recently, they sent a consumer to one of our staff for help in starting a business, when OVR regulations specifically indicate OVR should deliver such services. The local office seems to be addicted to paperwork and "assessments," as most of their time is spent in these activities. One "Note: The change to pitch (20) and font (1) must be converted manually.Note: The change to pitch (9) and font (1) must be converted manually.assessment" tool they use is called the World of Work Inventory (WOWI). This aptitude test is used to determine career interests and abilities. The form states, "Having this information will help you make good decisions about which job or career to select, what academic choices to make, or how to enhance the career you have already chosen. A consumer came into our center recently with a copy of her assessment results. The test was full of contradictions and misleading statements; it sounded more like a "Saturday Night Live" skit than an assessment of someone's potential. For example, one section said this person wouldn't be interested in mining and processing and should therefore avoid such jobs. Then, in another section, the test recommends mining as one of the careers the person should investigate. The most appalling aspect, after the absurdity of the test itself, is that it is evidently sent to Arizona for processing and analysis. I'd like to know how much tax money is spent on this travesty. In an era when funding is tight (STIC has had to fight for money in each of the last three years), how can OVR waste money this way? This Spring OVR, which jointly administers our Title VII, Part A program with us (the program that helps many of you to obtain much-needed home modifications and adaptive equipment), delayed delivery of Title VII Part A services for seven weeks. Why? They wanted more documentation more forms, more assessments, without much concern for what such requirements would do to the program. In fact, their demands would have cost us more money and used up valuable staff time for no gain or benefit. To make it Note: The change to pitch (9) and font (1) must be converted manually.worse, instead of discussing this with us, they went over our heads to Albany. In addition to being unprofessional, this act demonstrates a complete unwillingness to keep communication channels open between our agencies. I'd like to emphasize here that it is our view that the problems with our local office lie primarily with management, and with the regulatory process. Most of our experiences with individual counselors are positive. They try their best, under difficult circumstances and in an uncomfortable environment, to provide good services to their clients. As in many state agencies, I imagine staff burn-out and disillusionment with the system are common. Nevertheless, most counselors give their jobs their best efforts. They should in fact be congratulated for surviving what sometimes appears to be a war zone. Yes, I would say OVR has a long way to go before it can consider its house in order and we need to make sure that when changes are made they address all the issues, not just those on the surface. We must ensure that the whole apple is good, not just the shiny, appealing skin. This almost means starting from scratch. The core is what's causing the rest of the apple to rot. Can we extract it before it's too late, so OVR can grow to be a program benefiting people with disabilities instead of obstructing them? I sincerely hope so. As always, I am willing to do anything I can to make the system work. Again, Mr. Gloeckler, I wish you luck. Your responsiveness, thoroughness, and demonstrated preference for action shows you are equal to the task. K. Media One of the best tools in grassroots organizing is media outreach. Media hints: 1. Media is a business; they need to fill their space and sell advertising. They need us as much as we need them. 2. You can't control a story's final version, but you can help to get the story you want by distributing press releases with several quotes stating your concerns, or expressing opposition/support for the issue, etc. 3. Radio stations are often shorthanded, with only one person both to cover and read the news. Therefore, the press release may be their only way to give your issue an airing. 4. You can overuse media. Save your media opportunities for only the most important campaigns/issues. 5. Each form of media is different. Use print media, TV, and radio appropriately. Newspapers and television like visual prompts, things that will make a good photo opportunity. 6. Build relationships with reporters, editors, and TV and radio talk show hosts. If a reporter does an especially good job on a story, uses the correct terminology, presents the issue fairly, portrays people with disabilities in a positive light, etc. send them a thank you note and compliment the story/article. This approach goes a very long way in cultivating friends in the media. 7. Keep current data on names, addresses, phone/fax numbers, and program schedules for all local media. This information should be available at a moment's notice. 8. Know the difference between a news story and a feature story. Feature stories are great for educating the community on an issue (such as the effectiveness of self-directed personal assistance services or educational inclusion) in a non-crisis situation. You should generate such stories as often as possible. A news story is "hard news" about breaking events, such as attempts by the Governor or legislators to cut programs, or events you create such as rallies, demonstrations, and public forums. L. Generating Feature Stories 1. Newspaper: Sunday editions tend to have more space and interest in feature stories than weekday editions. Preferably, use a reporter who has worked well with you before. Otherwise, contact the editor for the local section of your paper, or a feature columnist to describe your idea and ask for an article. 2. Radio: Most radio stations have public affairs programs addressing issues of local or statewide interest in the area. They are often struggling to find new topics for their shows and will be eager to interview you for their programs. While most of these programs air in off hours, they reach a surprising number of people and should not be overlooked as part of your overall advocacy strategy. 3. TV: Many TV stations also have public interest interview shows. They air at off hours, but they may give you 15 minutes or even half an hour to explain your issues. Local TV news may also have regular features where they highlight a local organization, a specific issue, etc. This would be most common in smaller towns. 4. To generate a feature story, develop the subject. Decide what your message is. Select a spokesperson and a situation to build your story on. If the story is about inclusion, find a student who is integrated in regular classes and is willing to be filmed there. Feature stories are about people. Find people who are willing to be public. M. Generating a News Story The best way to get media attention is a press release. A press release is a 1-page document giving the Who, What, Why, Where and When of the event, and a contact name and phone number. There are two kinds of press releases. Each has advantages and disadvantages: 1. If you want to speak directly to a reporter, put only a hint of information in the press release, just enough to tease his/her interest. The reporter will have to call you for details. But, if it's a busy news day, the reporter may not have time to call you, and without more information, you won't get coverage. This approach is best to use when holding a press conference. However, press conferences take a lot of time for reporters and TV camera people. If your conference happens to compete for attention with one set up by an elected official or other newsmaker, or with a breaking news event, you will probably bee on the losing end. Therefore, limit the number of press conferences you hold, and try to have a topic which is controversial, or an event which features a prominent spokesperson. 2. To get consistent media attention, put details and some short, provocative quotes in the release. This way, reporters can write a story even if they don't have time to contact you (though they may call with questions anyway, and TV or radio, if they cover the story, will need to get you on tape). Also, smaller weekly papers that don't have a lot of reporters will be more likely to run the story (sometimes they print your release verbatim) and you'll get wider coverage using your exact words. 3. For any major event, it is suggested that you send out a press advisory at least one week in advance via fax, email and regular mail. It should be brief, just giving enough info to get them interested and the event on their calendars. Two or three days later, the advisories should be hand-delivered to the various media outlets. This only works in situations (such as events at your state capitol) where the media have a pressroom for their use. All the major papers and radio/tv stations are usually represented. 4. Press releases should be faxed, e-mailed and hand delivered the night before or morning of the event, depending on the timing of the activities. It should include explanations of the issue and several quotes. If a reporter attends the press conference and/or the rally/action, then they can use the release to build upon their story. If the reporter is not present, they can at least use the quotes to provide basic coverage of the event. 5. When possible, put these materials out to the statewide network so that they can replicate the process in their local media markets. 6. If there are editors or reporters you know and trust, send the release to them by name. However, they may not always be working on the day you need coverage, so also send releases to "The News Editor" and even to the general address of the media outlet. Paper gets lost at media offices. The more copies you send, the more likely it is that the right person will see one. 7. Remember! There is no such thing as "off the record." Say only what you'll feel comfortable seeing and hearing in the news. Try to make quotes short, meaningful, and striking. 8. Finally, never promise what you can't deliver, and be sure what you say is accurate. Reporters hate responding to a "juicy" press release to find nothing much going on, or being made to look bad by publishing information that turns out to be wrong. If you follow these rules, you'll gain a reputation for being knowledgeable, authoritative, and easy to work with, and the media will come to you for quotes or background on every disability story they cover. Sample MEDIA PRESS KIT PRESS ADVISORY October 5, 2000 For more information contact: (name, phone, address) MEDICAID BUY-IN PRESS CONFERENCE AND RALLY The Coalition for a Medicaid Buy-In in New York State is holding a Press Conference on Thursday, October 12, 2000, at 12:30 PM, in the LCA Room of the Legislative Office Building in Albany, New York. Coalition members will give an update about the current status of a Medicaid Buy-In Program for New Yorkers with disabilities. This will include a summary of States that have adopted a Medicaid Buy-In Program to date, as well as review of initial enrollment data from these States, which challenge the validity of cost projections developed by the New York State Department Of Budget. Coalition members will also speak about an effort to seek support for a Medicaid Buy-In Program from the business community, which will continue through the end of this year. Finally, an update will be given about the progress made to register and turnout an additional 124,000 New Yorkers with disabilities at the polls on Election Day. This effort is part of the non-partisan VOTE! 2000 Campaign sponsored by the National Organization on Disability. A Medicaid Buy In Rally will take place immediately after the Press Conference at 1:30 PM before the front steps of the New York State Capitol. Governor Pataki, members of the New York State Legislature and U.S. Senate candidates Rick Lazio and Hillary Clinton have been invited to attend and demonstrate their support. Members of the statewide disability community are looking for bipartisan leadership to step forward and enact a Medicaid Buy-In Program in a special session before Election Day. In the event of inclement weather, the rally will be held in the "well" of the Legislative Office Building. Governor Pataki and the New State Legislature did not enact a Medicaid Buy-In program for New Yorkers with disabilities before the end of the last legislative session. Subsequently, this issue emerged as one of the top items of "unfinished business" to be addressed by the State. A Medicaid Buy-In program will allow a person with a disability to maintain their Medicaid health care coverage while they work. As proposed, participants earning below $26,000 per year will make no premium payment to encourage entry into the job market. Individuals earning above this amount will make premium payments based on their annual income. Overall, it will help to eliminate health care coverage as a major barrier for the employment of individuals with disabilities who have needs beyond most employer-sponsored health care plans. In addition, many disabled individuals are excluded from entry into such plans due to "preexisting conditions." The "Coalition for a Medicaid Buy-In in New York State" includes representatives from a broad range of statewide networks, advocacy and consumer organizations serving thousands of New Yorkers with disabilities. Coalition members include: New York Association of Psychiatric Rehabilitation Services, Housing Works, Corporation for Supported Housing, New York State Rehabilitation Association, Association for Community Living, Coalition of Voluntary Mental Health Agencies, New York Works Exchange, Mental Health Association in New York State, Mental Health Empowerment Project, New York State Council for Behavioral Health Care, National Alliance for the Mentally Ill-New York State, New York State Traumatic Brain Injury Association, Eastern Paralyzed Veterans Association, United Cerebral Palsy Association of New York State, Gay Men's Health Crisis, New York State Association of Agencies, Self Advocacy Association of New York State, Association of Independent Living Centers in New York State, Coalition On Independent Living, and the New York State Independent Living Council. PRESS RELEASE October 12, 2000 For more information contact: (name, address, phone) ADVOCATES RALLY FOR MEDICAID BUY-IN BEFORE ELECTION DAY 2000 URGE GOVERNOR PATAKI TO FULFILL PUBLIC PROMISE TO ENACT LANDMARK PROGRAM "We return to Albany again to persuade the Senate and Governor to enact a Medicaid Buy-In program for New Yorkers with disabilities before Election Day 2000," remarked (name, affiliation) "We are urging Governor Pataki to follow up on the public promise made yesterday to move and approve this vital bill, which will provide health care benefits to disabled individuals while they work." The Assembly passed the Work and Wellness Act by a vote of 143 to 0 in June 2000. Several key Republican Senators cosponsored their version of the bill, but failed to take action before the end of the legislative session because of the Governor's initial concern over out-year cost projections. However, the initial enrollment data from five states that recently adopted a Medicaid Buy-In program challenge the excessive cost estimates provided by the Department Of Budget. "The enrollment information proves what we knew, the vast majority of individuals looking to participate in a buy-in program are already Medicaid eligible," noted (name, affiliation). "They do not represent any additional cost to New York's taxpayers. Some individuals will actually reduce the cost by making premium payments for their Medicaid." Members of the "Coalition for a Medicaid Buy-In in New York" also announced the start of a grassroots effort to seek business support for the program, which will continue through the end of this year. (Name affiliation) commented, "In the Binghamton area, we have obtained support from four businesses so far, including Time-Warner." Advocates will forward copies of business support petitions to the Governor's Office. Coalition members announced progress in their attempt to register and turnout an additional 124,000 New Yorkers with disabilities at the polls on Election Day. This effort is part of the non-partisan VOTE! 2000 Campaign sponsored by the National Organization on Disability. "We know that our collective networks will reach out to over 148,000 persons with disabilities by November 7th," said (name, affiliation). . "This includes individuals from the mental health, developmental disability, Traumatic Brain Injury, HIV/AIDS, and physical disability communities." New Yorkers with disabilities will rally in support of a Medicaid Buy-In program before the front steps of the Capitol at 1:30 PM following the press conference. The coalition members have invited the Governor, members of the Legislature, and U.S. Senate candidates Rick Lazio and Hillary Clinton. In the event of inclement weather, the Rally will be held in the "well" of the LOB. The "Coalition for a Medicaid Buy-In in New York State" includes representatives from a broad range of statewide networks, advocacy, and consumer organizations serving thousands of New Yorkers with disabilities. Coalition members include: New York Association of Psychiatric Rehabilitation Services, Housing Works, Corporation for Supported Housing, New York State Rehabilitation Association, Association for Community Living, Coalition of Voluntary Mental Health Agencies, New York Works Exchange, Mental Health Association in New York State, Mental Health Empowerment Project, New York State Council for Behavioral Health Care, National Alliance for the Mentally Ill - New York State, New York State Traumatic Brain Injury Association, Eastern Paralyzed Veterans Association, United Cerebral Palsy Association of New York State, Gay Men's Health Crisis, New York State Association of Agencies, Self Advocacy Association of New York State, Association of Independent Living Centers in New York, Coalition On Independent Living, and the New York State Independent Living Council. MEDICAID BUY-IN PRESS CONFERENCE October 12, 2000 For more information contact: Time: Place: Agenda 1. Welcome/Review of Agenda. (Name, affiliation) 2. Medicaid Buy-In Update. (Name, affiliation) 3. Update on Other States. (Name, affiliation) 4. Business Community Support. (Name, affiliation) 5. VOTE! 2000 Campaign Update. (Name, affiliation) 6. Questions and Answers. The "Coalition for a Medicaid Buy-In in New York State" includes representatives from a broad range of statewide networks, advocacy, and consumer organizations serving thousands of New Yorkers with disabilities. Coalition members include: New York Association of Psychiatric Rehabilitation Services, Housing Works, Corporation for Supported Housing, New York State Rehabilitation Association, Association for Community Living, Coalition of Voluntary Mental Health Agencies, New York Works Exchange, Mental Health Association in New York State, Mental Health Empowerment Project, New York State Council for Behavioral Health Care, National Alliance for the Mentally Ill - New York State, New York State Traumatic Brain Injury Association, Eastern Paralyzed Veterans Association, United Cerebral Palsy Association of New York State, Gay Men's Health Crisis, New York State Association of Agencies, Self Advocacy Association of New York State, Association of Independent Living Centers in New York, Coalition On Independent Living, and the New York State Independent Living Council. N. Writing to Newspapers Most newspapers print short letters to the editor on current issues. Some also occasionally give space for longer, editorial-type opinion articles. Usually, letters to the editor are for general readers and others who are not part of any agency or organization. Newspapers tend to print longer editorials only from people involved in an organized, identifiable group. Here are a few other things to keep in mind: 1. Call first to find out the paper's policy and requirements for letters to the editor and/or editorials, and follow them exactly. 2. Keep your letter as brief and to the point as you can. Letters to the editor should address, at most, two related points. 3. Don't assume that the readers already know about the issue you are discussing. State clearly what the issue is, where it stands now, and how it affects your life and/or the lives of people with disabilities. 4. Urge readers to take action--even if it is only to change their minds about the issue. 5. When writing from your organization, make sure to give the phone number and/or information on where readers can learn more about the letter's topic. O. RAMIFICATIONS OF ADVOCACY The more successful your advocacy efforts, the higher the possibility that an agency, official, etc. will attempt retribution. This can take many forms: threatening your funding; complaining about your center to legislators or other high officials; program and/or fiscal audits; etc. In the situation related to the editorial in our agency newsletter about VR services, I received a letter less than a year later saying that we were going to be audited by the State Education Department (SED). VR is under SED and the centers are under VR. Additionally, a friend of mine in SED had alerted me that the SED reviewers were instructed to "find something". I also learned that the reviewers were calling other state agency representatives and asking questions about my character and credibility (and they were quite frustrated to hear only good things about both). Unable to discredit me, they proceeded with the review, violating several of the principles in their own protocol, interviewing my staff and asking questions like, "Do you like your Executive Directive (ED)?" "Is your ED supportive of staff?" "Does your ED have a good reputation in the community?", etc. Of course my staff told me about this, and of course the SED reviewers denied it. To make a very long sixty-minutes-like episode short, the Preliminary Draft Audit Report was full of lies (all easily refuted by facts and documentation). Included were statements like, "The ED is totally blind and should not be allowed to sign checks." "The center achieved only 50% of their goals and they should be made to pay the money back" (The actual figure was 94% plus dozens of goals which were not in our contract). "The center misappropriated funds causing them to be over-reimbursed.", etc. It was further along in the report, in much smaller print that there was an explanation. In actuality, our accountant had discovered the over-payment and I had reported it to SED several months before I was told about the audit. I requested instructions on the best method for paying the money back, offering four different scenarios. SED never responded to my letter. The over-payment occurred because we lost some data due to a computer virus, a fact that was eventually mentioned in the audit report, several pages after the accusations. I responded to this travesty by hiring an attorney and challenging the report, something that shocked the reviewers and SED officials alike.They expected me to back down, after all, they controlled my purse-strings and thought fear of losing funds would shut me up. Of course, had their character check been more comprehensive, they would have realized that I'd never let such an injustice go unconfronted. In fact, after a year or so of negotiating and several rewrites of the report, I won every single point, and all of the falsehoods were removed from the final version. Additionally, our attorney only charged us for half of his time, because as he put it, "This was so much fun I'd feel guilty charging you the full amount." Do not be fooled by my strong language and bravado here into thinking I wasn't scared, and that I wasn't very nervous about the audit. But I could not, for the sake of my employees, our consumers and my own sense of self-worth and credibility, let such falsehoods stand. I fought and won, and I've never been challenged in such a way again. Quite the contrary, they respect me, and they know I won't back down if I believe I'm right. What can be learned from this rather lengthy scenario? 1. The overwhelming number of times, no one attempts retribution, though they may threaten it. 2. If someone does threaten you with loss of funding, etc. welcome them to take their best shot, it's not the response they'll expect. 3. It is okay to be scared of retribution, it just isn't okay to let that fear govern our actions or responses. 4. When we act from a position of strength and empowerment, it is the opposition which usually backs down. 5. State agencies and government officials usually don't expect to be challenged on their rules, regulations and edicts. When they are challenged, they are usually surprised and unsure how to respond. 6. Strong-arm tactics (threats and the like) can only work if we let them! 7. The squeaky wheel does indeed get the grease. 8. Be squeaky clean. Give opponents nothing that they can use against you. 9. Once you've successfully survived the "retribution" chances are that officials will think twice about using similar tactics against your agency again. 10. This experience was not fun, it was very time consuming and it was somewhat costly. However, I learned a lot, and I gained substantial credibility and eventual respect from my adversaries. My center now has a very good working relationship with the VR agency, and we share many mutual goals and principles. P. SUMMARY There are as many different styles of advocacy as there are people, and there are innumerable tactics and strategies that groups can develop to successfully promote and achieve their issues and goals. Below is a list of the major factors which must be considered in your efforts: 1. If possible, do not begin an advocacy effort/strategy from a confrontational position unless the situation warrants it and nothing else will be effective. 2. If an issue is volatile, take enough time to consider strategies and ramifications of actions. (Cooling off period.) 3. Be credible. Make sure you have the facts. Do your research before approaching public officials, businesses/agencies, etc. 4. Know the right people to talk to about specific issues. 5. Know all sides of the issue, not just the side that you support. Find out where the opposition is "coming from." Understand their reasons and positions as well as who else may share them. 6. Identify common ground with the opposition, then use your shared beliefs/values/needs as the basis for your proposals if possible. This can be very effective, since the opposition will have a much harder time arguing against your points. 7. Identify other stakeholders, people with whom you can make common cause to build coalitions when appropriate. 8. Ask for the moon and accept the stars. (Ask for the ideal solution but have a compromise position in mind. Know what you're willing to give up and on what points you absolutely cannot compromise.). 9. Try to resolve problems at the lowest level but don't hesitate to contact a higher authority if the problem is not resolved. (Go through the chain of command.) 10. Put the issues in writing and keep a copy. This should include your expectations about when you want a response and what steps you will take if you don't get one. 11. Always follow through on your timeline (especially if you make threats or promises.) 12. Keep records (names, dates, etc). of who you talk to, when you spoke, and the content of the discussion. It does not have to be lengthy. 13. Always attend important meetings with another person (witness). 14. Remember, "The pen is mightier than the sword". Write letters to the editor of local newspapers, editorials in your agency newsletters and in any other publication where you can largely control the content of the article. This strategy is extremely effective, but can also create some volatile situations, so it should be used only when other things have been tried first. 15. When you get desired results, write thank you letters or give other appropriate recognition. 16. Be systematic and well organized. The more organized you are the better your chance of success. 17. Never forget the power of advocacy through infiltration. When you join boards/committees, etc., your issues become part of the group agenda, not merely "your" issues. It also serves to heighten awareness about access/accommodations, and keeps disability issues always out in the open. 18. When all else fails, never forget the power of the media. This should be used sparingly (usually as a last resort) and should be well considered. This strategy can backfire because we never really know how the media will present the issue. It can, however, also achieve great results. 19. Cultivate reporters. Make an effort to congratulate or thank them for good stories that present people with disabilities and/or related issues in a positive light (even if the story had nothing to do with your agency/program). Southern Tier Independence Center Quarterly Lobbying Activity Log INSTRUCTIONS The purpose of this form is to track the time and money spent on lobbying each year. There are two kinds of lobbying: direct and grassroots (indirect). Direct lobbying is when you try to influence a specific piece of legislation by writing or talking to a legislator and/or his/her aides. This would include city council members, county legislators, state senators or assembly people, or federal congresspersons or senators. It does not include agency heads, the Governor, the mayor, or the county executive. ? Example: Letter to Senator X asking him to sponsor Senate bill number 0000. Grassroots lobbying is when you try to influence others such as consumers, agency reps or other members of the public about a specific piece of legislation or if you urge them to contact legislators about an issue. This includes verbal and written communications. ? Example: "We want you to support the New York State Assembly bill creating a CDPA program." Or "Call Senator X and say we need stronger enforcement of the New York State Human Rights Law." It does not include advocacy unrelated to legislation such as: "You really ought to reconsider your position on assisted suicide." Include the following information on your form: DATE: Date lobbying activity occurred. ISSUE: What you were lobbying about, such as: home care, healthcare, Medicaid, IDEA, etc. The more specific the better, but please be brief. ACTIVITY: What form did lobbying take? MAILING: How many copies and was it regular or bulk mail. Attach a copy to the form; number the attachments and refer to the number on the form. TELEPHONE CALL: phone number and time of call. PERSONAL VISIT: Where (Binghamton, Albany, etc), total round-trip mileage and indicate if there were overnight accommodations and meals. TIME SPENT: Total time spent on activity. This should include time writing a letter/memo, preparing a mailing, running copies, traveling to/from appointments, etc. Examples A. ISSUE: Homecare ACTIVITY: Met with Senator X in Albany, 189 miles, no hotel TIME SPENT: 5 hrs, 45 mins DATE: 9/30/96 B. ISSUE: IDEA ACTIVITY: mailing to consumers, bulk 284 (see attachment 1) TIME SPENT: 2.5 hours DATE: 10/4/96 C. ISSUE: Healthcare ACTIVITY: Phoning, get people for Albany rally: 555-5551, 10 mins., 555-5552, 6 mins. TIME SPENT: 3 hrs,45 mins. DATE: ATTACH copies of any correspondence with local, state or federal legislators. ATTACH copies of correspondence with others that mention specific legislation or urge people to contact legislators about an issue. QUARTER: YEAR: STAFF: DATE: ISSUE: ACTIVITY: TIME SPENT: Southern Tier Independence Center Independent Living Philosophy People with disabilities should be empowered to control the direction of their own lives. This means choosing their goals, plotting their course and taking responsibility for their actions and the results. People with disabilities have the right to make their own choices and decisions and the right to make mistakes and learn/benefit from those mistakes. Independent living centers (ILCs) foster independence, help disabled people to develop networks and supports and promote self-reliance. ILCs advocate for the inclusion and integration of people with disabilities in all aspects of community life. STIC MISSION STATEMENT STIC's mission has three parts. We provide assistance and services to people with all disabilities of all ages to increase their independence in all aspects of integrated community life. We also serve their families and friends and businesses, agencies, and governments to enable them to better meet the needs of people with disabilities. Finally, we educate and influence our community in pursuit of full inclusion of people with disabilities. STIC Values Statement * We value the ability of every human being to reach for their dream. * We hold that each individual has strengths and weaknesses that must be taken into account in their journey toward their dreams. Each individual must accept the responsibility for the dream, the journey, as well as the work to get there. * We offer support, ideas, tools, training, respect and concern. * We will not do for, when it can be done by the person. * We will not patronize for the sake of efficiency, or in the guise of caring. We will try to understand when this causes fear, anger and frustration. * As we develop programs and policies, we will be guided by the dreams and abilities of the people we serve. * No matter how difficult the road, we will always choose the path of inclusion and integration. * We will not sacrifice our principles or values for money, convenience or expediency. * We will not shy away from controversy if that controversy will further our mission. * We offer hope and continue to look at each person as a unique and joyful experience that will teach us and take us on a journey where we have never been. "Revolutions begin when people who are defined as problems gain the power to redefine the problem." John McKnight Section 3 Utah Legislative Coalition for People with Disabilities Advocacy Resources Utah State Office of Rehabilitation Independent Living Building Block Request 2001 Legislative Session Funding Request $328,589.00 Background During the last legislative session, Funding in the amount of $300,000.00 was allocated for the development of two new Centers for Independent Living (CILs). Those CILs have been established in Ogden and the Provo area. Both will start providing services to people with disabilities in early 2001. This funding will provide the second phase of funding to these new centers. These two new centers, together with four existing CILs cover the state by offering Independent Living services in local communities. The four centers are located in Logan, St. George, Price and Salt Lake City. There are also satellite offices in Brigham City, Vernal, Moab and Tooele. Recommendation In order to fully support the development of the new CILs, a recommendation is being made to allocate an additional $300,000. The remaining $28,589 will be used to support the Independent Living Specialist within the Utah State Office of Rehabilitation. This is critical in order for that person to support the technical assistance needs of the new CIL's. Justification The funding will be used to support Independent Living in Utah, which offers opportunities for people with disabilities in the following areas: * Peer Support * Independent Living Skill Training * Advocacy * Information and Referral * Community Integration and Recreation * Assistive Technology * Housing * Transportation These services have assisted people in Utah with disabilities as they have worked toward independence. Over 3,400 people with disabilities were served in FY 99. Although the number of people served has grown at a rapid pace, there remain numerous people throughout Utah that are unable to access Independent Living. Funding from this request will begin to address the areas of the state that remain underserved. For further information please contact Corey L. Rowley at 801.463.1592 Legislative Coalition for People with Disabilities Bill Tracking Sheet - February 14, 2001 Sponsor Title. LCPD Comm LCPD Rank Senate Stand Comm Senate Pass 2nd Senate Pass 3rd House Stand Comm House Pass 2nd House Pass 3rd HB 42 Bigelow, R. Funding for Classroom Supplies Appropriates $4.4 mil of Uniform School Fund for FY 2001-02 to State Board of Ed. for distribution to public school teachers for classroom supplies and materials. Sp Ed S Gayle EDU 1/22 1/25 HB 47 Hogue, D. Approp. for Long-Term Professional Development Prog. for Dis. Service This appropriates $495,000 from Gen. Fund to CPD at USU for FY2001-02 for long-term training of supported employ-ment personnel, interpreters, etc. SPD Health SS Pete HHS 1/17 1/18 HB 50 Litvack, D. Amendments to Hate Crimes Revises Criminal Code procedures & criminal penalties for commission of a crime motivated by bias or prejudice. $ JUD Died in Comm HB 69 Beck, T. Sexual Violence Prevention and Comm. Awareness Appropriates $770,000 from Gen. Fund to DOH for FY2001-02 to fund comm. awareness in schools. Health M JUD HB 79 McCartney, T. Persons with a Disability- Technical Revisions Modifies Utah Code to make technical corrections to provisions relating to a person with a disability or impairment. Restates Federal standard for definition of a person with a disability. SPD S Pete HUS WOR 1/23 1/25 HB 84 Adair, G. Service Providers for Adult Deaf/Blind Create new program for adults who are deaf/blind providing interveners to allow individuals to connect with the world, live more independently, and communicate and interact with others. $360,000 Rehab SS Leslie G. HB 90 Holdaway, K. Residential Facilities for Persons with a Disability Modifies municipal and county provisions relating to residences for persons with a disability. Hous. & SPD M TPS HHS 1/26 2/5 HB 99 Morgan, K. Reading Skills Development Center Amendments Modifies provisions related to State System of Pub. Ed. by changing Center into a clinic to assist educators and parents of students in assess. Sp Ed EDU 2/6 HB l00 Hogue, D. Classroom Communication Amplification Modifies provisions related to State Syst. of Pub. Ed. Creates 3-yr pilot program for providing audio amplification devices/ equipment to public school classrooms. Sp Ed EDU HB 130 Beck, T. Exemption for Domestic Workers for Persons Eligible for State and Federal Programs Modifies Labor Code to exempt from coverage under worker's comp. provisions. Technical changes. SPD SS Jerry C. BLE HB 137 Throckmorton, M Mental Health Treatment MH HB 143 Siddoway, R. Voting by Secret Ballot for Visually Impaired Requires Lt. Gov. Elections Office to study, report possible methods. Rehab SS Leslie G. GOC 2/5 HB 150 Donnelson, G. Acceptance of Mental Health Treatment MH HB 170 Throckmorton, M Prescribing Psychiatric Drugs or Medication Modifies Occupations and Professions Code to make it unlawful conduct for licensed person to prescribe a psych. med. for a minor without providing opportunity for a physical . . . MH O Vicki HHS 2/12 HB 204 Harper, W. Olene Walker Housing Trust Fund Appropriation Appropriates $4,500,000 from General Fund to Olene Walker Housing Trust Fund. Specifies that $2.5 mil is for Fiscal Year 2001-02 Only. Hous. SS Steve HUS BLE 1/16 1/17 HB 208 Lockhart, R. Conforming Amendments to Repeal of Health Policy Commission Modifies provisions related to the Health Policy Commission repealed last year. Deletes references to Health Policy Commission in the Health Code and the Insurance Code. Health M HEE 2/8 2/9 HHS 1/22 1/25 HB 365 Hatch, T. Institutional Trust Lands Amendments Establishes Ed. Enrichment Program for Hearing and Visually Impaired students; funded by interest and dividends from the permanent trust fund for Sch. for D/B Sch D/B SS Jan HR 05 Pace, L. Resolution Providing for Hearing Disabilities Rehab SB 29 Allen, R. Families, Agencies, and Communities Together for Children and Youth at Risk Amendments (FACT) Modifies FACT for Children/Youth at Risk Act; changes sunset date from July 1, 2001, to July 1, 2011. Sp Ed SS Jan HUS 1/17 1/18 EDU 2/6 2/7 SB 31 Knudson, P. Area Health Ed. Center Amendments Modifies Health Code to remove Dept. of Health from responsibility of establishing area health education centers. Establishes five area regional centers. No fiscal impact. Health S Tina HEE 1/19 1/22 HHS 1/26 SB 33 Davis, G. Mental Health Services for Foster and Adopted Children Task Force Creates Task Force. Specifies membership, responsibilities, procedures, and reporting dates. MH S Jan/ Vicki HEE 1/17 1/18 HHS 1/24 SB 37 Suazo, P. Hate Crimes Amendments Modifies Criminal Code, revises procedures and penalties for crime motivated by actual bias or prejudice. SS Jerry C. JUD 1/25 SB 62 Hale, K. Optional County Affordable Housing Funds Act Allows counties option to raise recording fees to fund county housing trust fund. Provides counties with tool to create pool of funding to expand affordable housing units/home ownership programs. Hous. SS Steve SB 68 Mayne, E. Placement of Certain Residential Facilities for Persons with a Disability Modifies provisions relating to counties and Utah Municipal Code to modify allowable restricts that these ordinances may contain. The Arc M Jerry TPS SB 97 Hillyard, L. Special Needs Adoption Services Provides description of special needs adoption services available and eligibility. Amends description of duties for Div. of Child & Family Services regarding financial support for adoptions. No Fiscal Impact M Jan HUS 2/2 SB 100 Poulton, S. Insurance Law Amendments Modifies Ins. Code and related provisions by addressing issues related to ins. business in general, health ins., life ins., and property ins. MH M Vicki BLE 2/9 2/12 SB 112 Sen. Knudsen Appropriations for Assistive Technology Appropriates $150,000 from uniform school fund and $150,000 from general fund for FY 2001-02 to State Board of Ed. to be distributed to State Office of Rehab. to purchase assistive technology devices and services. Rehab SS Corey HEE SB 121 Knudsen, P. Task Force on Improving Access to Health Care Creates task force on access to health care and coverage. Specifies membership, responsibilities, and reporting dates. Appropriates $37,000 from general fund. Child Health& Health SS Gina & Tina HEE 2/6 2/7 SB 137 Mayne, E. Procurement Code Requirements of Health Care Benefits Modifies Utah Procurement Code by requiring certain businesses to provide qualified health insurance coverage to employees as condition for contracting with the state under certain circumstances. Health SS Tina SB 140 Suazo, P. Task Force on Cultural and Linquistic Competency in Health Care Creates task force; specifies membership, respons., procedures, reporting dates. Health S Tina HEE 2/6 2/7 SB 165 Hellewell, P. Noncustodial Visitation Changes term "visitation" to "parent-time" throughout Code. Health S Tina HUS 2/6 2/7 JUD SB 180 Knudsen, P. Prescription Drug Coverage & Formularies Establishes minimum standard for access to prescription drugs excluded from an insurance companies formulary. Health S Tina SS Strong Support S Support M Monitor O Oppose SO Strongly Oppose $ Bill has fiscal impact LEADERSHIP REPORT FORM NAME MONTH YEAR Day Meeting/Activity Hours Miles NOTE: Under "Meeting/Activity" when contacting legislator, agency representative, etc., list name, whether contact was by phone, personal visit, letter; "Hours" includes travel time; "Miles" includes those an agency or organization may reimburse you for - it is still someone's "donation". LEADERSHIP VOLUNTEER REPORT OCT NOV DEC TOTALS Hours Miles Hours Miles Hours Miles Hours Miles TOTALS * Professional Rate 1,092.25 Volunteer Hours x $ 7.00 = $ 7,645.75 351.00 Professional Volunteer Hours x $25.00 = $ 8,775.00 6,480.75 Miles x $ 0.31 = $ 2,009.03 Total Donation for Quarter = $18,429.78 JAN FEB MAR TOTALS Hours Miles Hours Miles Hours Miles Hours Miles TOTALS * Professional Rate 1,092.25 Volunteer Hours x $ 7.00 = $ 7,645.75 351.00 Professional Volunteer Hours x $25.00 = $ 8,775.00 6,480.75 Miles x $ 0.31 = $ 2,009.03 Total Donation for Quarter = $18,429.78 APR MAY JUN TOTALS Hours Miles Hours Miles Hours Miles Hours Miles TOTALS * Professional Rate 1,092.25 Volunteer Hours x $ 7.00 = $ 7,645.75 351.00 Professional Volunteer Hours x $25.00 = $ 8,775.00 6,480.75 Miles x $ 0.31 = $ 2,009.03 Total Donation for Quarter = $18,429.78 JUL AUG SEP TOTALS Hours Miles Hours Miles Hours Miles Hours Miles TOTALS * Professional Rate 1,092.25 Volunteer Hours x $ 7.00 = $ 7,645.75 351.00 Professional Volunteer Hours x $25.00 = $ 8,775.00 6,480.75 Miles x $ 0.31 = $ 2,009.03 Total Donation for Quarter = $18,429.78 LEADERSHIP VOLUNTEER REPORT 1ST Quarter 2nd Quarter 3rd Quarter 4th Quarter TOTALS Hours Miles Hours Miles Hours Miles Hours Miles Hours Miles TOTALS * Professional Rate 1,092.25 Volunteer Hours x $ 7.00 = $ 7,645.75 351.00 Professional Volunteer Hours x $25.00 = $ 8,775.00 6,480.75 Miles x $ 0.31 = $ 2,009.03 Total Donation for Quarter = $18,429.78 Legislative Coalition for People with Disabilities 2000-2001 VOLUNTEER HOURS/MILEAGE Meeting: Date: Starting Time: Ending Time: Total Hours: Number of Citizen Volunteers Attending x Hours = x $ 10.00 = $ Number of Professionals Attending x Hours = x $ 25.00 = $ Other Volunteers Hours = x $ 10.00 = $ Total Volunteer Hours $ Volunteer Miles Driven x $ .31 = $ TOTAL COST $ Prepared By Legislative Coalition for People with Disabilities 2000-2001 VOLUNTEER HOURS/MILEAGE Meeting: Date: Starting Time: Ending Time: Total Hours: Number of Citizen Volunteers Attending x Hours = x $ 10.00 = $ Number of Professionals Attending x Hours = x $ 25.00 = $ Other Volunteers Hours = x $ 10.00 = $ Total Volunteer Hours $ Volunteer Miles Driven x $ .31 = $ TOTAL COST $ Prepared By Legislative Coalition for People with Disabilities Meeting Start Time End Time Location Name Vol. Org/ Assoc. State Dept/ Agcy No. of Contacts w/Legislators, Policymakers Street Address (if changed) City Zip Other Vol. Hours Rnd Trip Miles Legislative Coalition for People with Disabilities WHY A COALITION? "No lasting achievement is possible without a vision, and no dream can become real without action and responsibility." William Butler Yeats As with many things in life, the work, the risking, the dedication of a few has made life better for many. There exists today a wide array of services for people with disabilities. These services have emerged because of grassroots advocacy by people with disabilities, their families, friends, and caring professionals. The results of advocacy have been encouraging in the last decade, but the battles guaranteeing the rights of individuals with disabilities are far from over. Since its inception in 1981, the Legislative Coalition For People With Disabilities (LCPD) has successfully advocated for progressive changes for people with disabilities. The LCPD is made up of individuals with disabilities, their families, advocacy groups, providers, professionals, and agencies. You do not need experience in advocacy work to get involved. Advocacy means "to speak up, to plead the case of another, or to champion a cause." The LCPD makes being an advocate easier by providing a network of supports, experience, training, and by dividing responsibilities to enable advocates to focus their energies on single issues or budgets. PURPOSE OF THE LCPD The LCPD has been established by the Utah Governor's Council for People With Disabilities and advocates for disabled individuals of all ages. MISSION STATEMENT The mission of the Legislative Coalition for People With Disabilities is to advocate for public policy affecting all people in the State of Utah who have disabilities. STRUCTURE OF THE LCPD LCPD is governed by volunteers who serve in leadership positions. Executive Leadership consists of a Chair, Vice-Chair, Secretary, Past Chair and a Representative of Committee Chairs; they comprise the Executive Board. The Executive Board directs and coordinates the activities of LCPD. The Executive Board Officers are elected by LCPD Membership at the annual meeting. Committee Chairs spend their time focusing on a single system and its issues. Committee Leadership is appointed by Executive Leadership according to the LCPD By-laws. The committees are: ( Special Education ( Schools for the Deaf and Blind ( Higher Education ( Rehabilitation ( Children's Special Health Care Needs ( Health Care (Medicaid) ( Mental Health ( Services for People with Disabilities ( Housing & Transportation LCPD OFFICE The LCPD Office is located with Rise, Inc., and consists of two Co-directors, an office manager, and one part-time staff. The LCPD's success is dependent on the dedication of volunteers. Address: 275 E. South Temple, #201 SLC, UT 84111-1268 Telephone: 801-363-3300, menu 1 Fax: 801-363-1256 Email: lcpd1@xmission.com Web Site: lcpd.state.ut.us/legccoal.htm LCPD MEETINGS The LCPD meets on the 2nd Friday of every month at 12:30 p.m. at the State Capitol. Committee meetings may be held at the end of the LCPD meeting, or as called by the committee chairs. During the Legislative session the LCPD meets weekly on Fridays at 12:30 p.m., in the State Office Building behind the Capitol. HOW CAN I GET INVOLVED ( Become a member of the LCPD by filling out of membership form. ( Become informed on an issue that is important to you. ( Become a part of the LCPD calling tree. ( Call, write or visit your legislator. ( Attend a LCPD meeting. ( Attend LCPD Citizens Day at the Legislature. ( Be an active member on one of the LCPD Committees. WHY LCPD MEETS YEAR ROUND OR THE BUDGET PROCESS IN UTAH LCPD has found that advocacy is a year round activity. There are many places where an advocate can have an impact. As early as April or May, state agencies begin work on their budget requests for the fiscal (budget year that won't begin for another 12 months! What can you do? Meet with agency directors or board members. By October, state agency budget requests are being studied and debated by the various budget-builders in the Governor's Office of Planning and Budget. What can you do? Meet with analysts in the Governor's Office of Planning and Budget. By law, the Governor must submit his "Budget Recommendations" (a large publication that covers the entire State Budget) to the legislature's budget officers-the legislative Fiscal Analysts-no later than 30 days before a general legislative session begins. If you have been unsuccessful in getting your budget concern into this publication, your job will be harder, though not impossible. State agencies are now finished with input to the budget. The Governor is their "boss" and they can be expected to be loyal to his official "recommendations." The Legislative Fiscal Analyst and his/her staff are also forming a budget in preparation for the legislative session. All input by advocates must be in by the end of October. During the session, the Legislative Analysts will change their budgets as requested by the Legislature. What can you do? Meet with the legislative analysts before October. The Legislative Session is the final place where advocates can have input into the budget. History has taught us that an individual budget item-no matter how vital the service it represents-has a slim chance of being inserted into the State Budget process during a legislative session. Legislators are then assigned to "Appropriations Subcommittees" and spend a great deal of time throughout the General Session studying budget information on various state agency budgets. Public testimony is very important-it can be the critical factor that results in final approval of funding for a program or service. To testify, you must be present on the day when the Subcommittee studies that particular service or program. What can you do? Visit with your legislators at the Capitol. Unlike the National Budget, by law Utah's Budget must balance. In February revenue projections are released. The Executive Appropriations Committee (made up of Legislative Leadership and other members of the Senate and House) instruct the Appropriations Subcommittees to finalize their recommendations within set "bottom-line" dollar figures. This is the most painful phase of the budget process. Advocates may watch programs and services they've worked diligently to support be tossed out in a single moment of subcommittee voting. What can you do? Remember: It's not over until it's over! Continue to work with Subcommittee Members throughout this process, encourage them and thank them for their work. Speaking up during all these key junctures will not guarantee that you will win, but not speaking up guarantees that your wishes will not be heard. James Madison said it best: "A popular Government without popular information or the means of acquiring it is but a prologue." To: The 2001 Legislature From: Legislative Coalition for People with Disabilities The Mission of the Legislative Coalition for People with Disabilities is to advocate for public policy affecting all people in the State of Utah who have disabilities. About members of the Legislative Coalition for People with Disabilities: ( Membership includes individuals with disabilities, their families, advocacy groups, providers of services, and other interested individuals. ( Most members of LCPD are volunteers without pay for their advocacy work. ( The LCPD is made up of 1436 individual members. ( The LCPD represents over 90 individual groups and their memberships. For more Information please contact The Legislative Coalition for People with Disabilities Tina Johnson, Chair - 801-566-5075 Pete Shingledecker, Vice Chair - 801-265-1748 Leslie Hofheins, Secretary - 801-972-1479 Corey Rowley, Past Chair - 801-453-1592 Linda Smith or Kris Fawson, Co-Directors - 801-363-3300, ext. 15 Camille Powell, Office Manager - 801-363-3300, ext. 16, or 580-6091 LCPD is located with RISE, Inc. at 275 East South Temple, Suite 201, SLC, UT 84111-1268 ( 801-363-3300 ( or: 801-580-6091 (Fax: 801-363-1256 ( email: lcpd1@riseinc.net ( www.lcpd.state.ut.us/legcoal.htm Legislative Coalition for People with Disabilities 2001 Fact Sheets Table of Contents COMMUNITY & ECONOMIC DEVELOPMENT APPROPRIATIONS COMMITTEE Ivory Housing HEALTH APPROPRIATIONS COMMITTEE Buff Health Care Yellow Children's Health Services HUMAN SERVICES APPROPRIATIONS COMMITTEE Goldenrod Mental Health Pink Services for People with Disabilities HIGHER EDUCATION APPROPRIATIONS COMMITTEE Ivory Higher Education PUBLIC EDUCATION APPROPRIATIONS COMMITTEE Buff Rehabilitation Yellow Special Education Goldenrod Children's Deaf/Blind Issues BILLS Pink All Committees Legislative Coalition for People with Disabilities HOUSING COMMITTEE FACT SHEET BILLS NEED DESCRIPTION Olene Walker Housing Trust Fund $ 5,000,000 ( Affordable housing is a major obstacle in our community. ( 70% of people with disabilities live at or below the poverty level. ( Subsidies for construction of affordable housing are critical. ( This figure represents $1.5 mil in base funding, and $3.5 mil in supplemental funding For Further Information Please Contact Legislative Coalition for People with Disabilities Housing Committee Steve Gillmor, Chair - 801-364-6901 Celia Crow - 435-753-5353 Legislative Coalition for People with Disabilities HEALTH CARE COMMITTEE FACT SHEET NEED DESCRIPTION Medicaid Funding Federal Match Rate Adjustment $ 8,598,100 Utah's per capita income has been increasing faster than the national average, which causes the Federal Match Rate to decrease. This will enable current clients and new applicants to receive needed services. Replacement One-Time Funding Medicaid $ 5,700,200 Last year ongoing programs were funded with one time money. This needs to be replaced with ongoing money from the general fund. Medicaid Inflation $10,781,500 with additional $37,118,100 To comply with Federal mandates and continue current broad based services. This will compensate providers for their increased costs, estimated at approximately 6 percent. Working Disabled $ 547,600 Total $1,934,000 To enable people with disabilities below 250% of poverty level to have the right to work while continuing on Medicaid or Medicare. They would be adding to the tax base, and able to become integrated into society. Medicaid Dental Fee Increases State Funds $ 70,800 Total 250,000 There continues to be a limited number of dentists willing to see Medicaid clients. This fee increase would help increase dental resources. Medicaid Physician Fee Increase State Funds $ 644,900 Total $1,988,100 To bring reimbursement for Medicaid visits closer to other payment sources. In some areas it is very difficult to find a physician who will accept Medicaid, and a decline is being seen in physicians who do see Medicaid clients. Medicaid UMAP $ 3,000,000 To provide much needed medical care coverage for those not able to receive care. Physical Disability Waiver This funding is included in Division of Services for People with Disabilities (DSPD) funding. Currently there are 68 people in the community on this waiting list. Olmstead will impact this waiver, and it is vital that these needs are met. To receive care in the least restrictive setting is often less expensive and decreasing hospitalizations and promotes family, self esteem and the ability to participate in society. For Further Information Please Contact Legislative Coalition for People with Disabilities Health Care Committee Tina Johnson, Chair - 801-566-5075 Tiffany Pryor - 801-266-7508 Legislative Coalition for People with Disabilities CHILDREN'S HEALTH SERVICES COMMITTEE FACT SHEET NEED DESCRIPTION Early Intervention for Children with Special Needs $ 600,000 In the last four years Early Intervention has seen unprecedented growth. Part H of the Individuals with Disabilities Education Act (IDEA) mandates these services. Early Intervention services help diminish the potentially negative effect of the developmental delay or disability on the child, the family and the community. It helps these young children be ready to learn when they enter school. Twenty-five percent of children with disabilities who receive Early Intervention services do not require further special education services. The families greatly value these services, and pediatricians are referring more children than ever. Youth Suicide Prevention $ 100,000 Each year approximately 280 Utahns die from suicide. Utah consistently ranks among the top ten states in the nation for suicide. It is the leading cause of death for Utah males ages 15 to 44. In Utah, suicide rates for ages 15 to 19 have risen nearly 150% in the last 20 years. State funds are needed to implement recommendations from the Youth Suicide Prevention Task Force. For families, the need speaks for itself. Primary Care Grants - On-going $1,000,000 This program provides access to primary care health services for low-income individuals and families without health insurance who are not eligible for CHIP or Medicaid. It also covers primary care services not covered by Medicare, Medicaid, CHIP or private insurance. This amount would replace one-time funding with on-going money. This program is essential for our most vulnerable populations - those without access to other sources of health care. Everyone, especially children deserve quality health care!!!! Early Childhood Prevention Services $ 100,000 Public health nurses make home visits to at-risk families with children ages 0-5. There is a greater need than can currently be met. Additional state funds are needed for caseload growth of 160 additional at-risk children statewide. The impact of these services is very beneficial in that there is: early identification of and resources to children with special needs; information on early childhood development; and long-term positive outcomes. Tele-Health Infrastructure $ 100,000 This funding includes monthly line charges for rural sites, maintenance costs for equipment and network at rural location, and a portion of the maintenance costs of the hub. This also includes a small amount for technical supplies, equipment, library services and instate travel to support the utilization of those sites. This infrastructure is the first step in helping address unmet needs of one of our under-served populations, the rural communities. Families will be able to access services, which are only offered on the Wasatch Front, in their local communities. For Further Information Please Contact Legislative Coalition for People with Disabilities Children's Health Services Committee Gina Pola-Money, Co-Chair - Bus: 801-272-1051; Home: 801-562-2582 Leslie Hofheins, Co-Chair - 801-972-1479 Legislative Coalition for People with Disabilities MENTAL HEALTH COMMITTEE FACT SHEET NEED DESCRIPTION Mental Health and Substance Abuse $4,000,000 Over the past five years legislative appropriations have decreased, and as a result 1,628 clients have been turned away from treatment. This funding is needed just to keep up with the demand for services. Program for Assertive Community Treatment/PACT $2,500,000 PACT is a proven model treatment program that provides round-the-clock support to individuals with the most severe and persistent mental illnesses. This program significantly reduces hospitalizations, incarceration and homelessness; and increases employment, access to decent housing, and quality of life. Twenty-Three Hour Crisis Beds These beds will be located at emergency facilities where law enforcement officers, courts or families and friends can take those who exhibit symptoms that appear to be dangerous to self or others. They will provide 23-hour observation in order to refer a person to the proper treatment services - mental health or substance abuse. Statewide Drug Courts $ 850,000 With the high success rate of already in place drug courts, this would expand this throughout the state of Utah. Standards Task Force No fiscal impact An appointed task force to evaluate standard for current civil commitment. Does the law need to be adjusted to serve public safety and individuals who may be considered a danger to self or others? For Further Information Please Contact Legislative Coalition for People with Disabilities Mental Health Committee Vicki Cottrell, Chair - 801-323-9900; Fax: 801-323-9799 Jan Ferre' - 801-583-0370 Legislative Coalition for People with Disabilities SERVICES FOR PEOPLE WITH DISABILITIES COMMITTEE FACT SHEET NEED DESCRIPTION ESSENTIAL SERVICES FOR PEOPLE WITH DISABILITIES TOTAL NEEDED State Funds $17,900,000 Medicaid $24,400,000 Total $ 42,300,000 Following is a plan to fund needed services for people with disabilities in Utah. This plan is also supported by The Arc of Utah, United Cerebral Palsy, and the Utah Association of Community Services. PROBLEMS ( 1900 people have critical and immediate needs for services. ( Approximately 1200 people with critical and immediate needs receive no services at all (the other 700 receive minimal supports). ( As Utah's economy remains strong, state funds are matched with a decreasing amount of federal funds (Medicaid Match Rate). ( Appropriated TANF funds must be converted to General Funds. ( Low wages make it difficult to hire and retain direct service staff. VALUES AND COMMITMENTS ( Utah services those with the most severe and critical needs first. ( Services are provided based on need and consumer choice. ( Alternate funding sources are used whenever possible. ( All people in critical need must receive at least some support immediately, and adequate support within one year. PLAN TO FUND THE NEED People with disabilities receive quality services through the Division of Services for People with Disabilities (DSPD). Funds are needed to meet the demands in the following categories ( Critical and Immediate Need Waiting List ( TANF (Temporary Assistance for Needy Families) replacement funds ( Federal Medicaid Rate Mandate ( Emergency Services & Multiple Crises (ESMC) ( Transfers from DCFS (Div. of Child and Family Services) at 18 ( DSPD Direct Care Staff ( "Olmstead" ADA Mandate ( Dually/Multiple Diagnosed Offenders ( Consumer Transportation Services ( Housing Assistance for Consumers TWO-YEAR 6% PROVIDER COLA, TOTAL NEEDED State Funds $1,600,000 Medicaid $3,300,000 Total $ 4,900,000 People with disabilities in Utah deserve quality services delivered by qualified providers. A cost of living increase is absolutely necessary to maintain the quality and integrity of the service delivery system. For Further Information Please Contact Legislative Coalition for People with Disabilities Services for People with Disabilities Committee Pete Shingledecker, Chair - 801-265-1748; Fax: 801-265-1891 Legislative Coalition for People with Disabilities HIGHER EDUCATION COMMITTEE FACT SHEET NEED DESCRIPTION Americans with Disabilities Act - Services Provided by Centers for Students with Disabilities $1,138,000 ( ADA has provided the impetus for increasing numbers of students with disabilities to seek enrollment in all of Utah's institutions of higher education. Even with USOR's reimbursement, the institutional budgets could not adequately cover all of the required accommodations and services. Without increased state ADA funding and replacement of the USOR's reimbursements, Utah's colleges and universities will not be able to meet the needs of this growing student population. ( Students with disabilities request accommodations each year. With these needed services students are able to attain training and education which lead to employment. They become tax-paying citizens and do not require lifetime government support. ( The Rehabilitation Act of 1973 mandates that institutions of higher education provide appropriate auxiliary services for students with disabilities so that they may have equal access to education. (Auxiliary services include interpreters for the deaf, readers and note takers among other services.) ( This funding is distributed to the 9 institutions based on need, number of students with disabilities served and type of disabilities served (i.e. deaf, blind, deaf-blind, etc.). For Further Information Please Contact Legislative Coalition for People with Disabilities Higher Education Committee John Adams - 801-486-5168 Lori Cox - 801-521-3605 Legislative Coalition for People with Disabilities REHABILITATION COMMITTEE FACT SHEET NEED DESCRIPTION Independent Living Building Block Request $ 328,600 To provide $300,000 additional funding to the two new Centers for Independent Living in the Ogden and Provo areas. The remainder will be used to increase the Independent Living staff position at USOR to a full time FTE. Vocational Rehabilitation Building Block Request $ 812,500 This addresses three needs: (1) inflation; (2) growth; and (3) caseload size reduction. This funding is vital to ensure that USOR does not go on an order-of- selection. Services for the Blind and Visually Impaired $ 54,000 This funding will be used to increase the salary range for teachers at the DSBVI who are currently the lowest paid in comparable states of Idaho, Oregon, Washington and New Mexico. Services for the Deaf and Hard of Hearing $ 47,100 This funding will be used to serve people who are deaf or hard of hearing and also have health challenges that have gone unmet. SUPPLEMENTAL REQUEST NEED DESCRIPTION Assistive Technology $ 351,000 To purchase assistive devices for people who are currently on the Assistive Technology waiting list. BILL NEED DESCRIPTION Appropriation for Assistive Technology $ 421,579 Sponsor: Sen. Peter Knudson This funding will be used to purchase assistive devices through Independent Living and other similar programs. It will also be used to increase the UCAT Director position to full time, fund a half-time systems support specialist, and purchase devices for a lending library Service Providers for Adults Living in Utah Who Are Deaf/Blind $ 360,000 Sponsor: Rep. Gerry Adair To create a new program, funding service providers for adults who are deaf/blind living in Utah. This will help individuals to connect with the world, live more independently, and communicate and interact with others. For Further Information Please Contact Legislative Coalition for People with Disabilities Rehabilitation Committee Corey Rowley, Chair - Bus: 801-463-1592; Pager: 800-612-6483 Leslie Gertsch, - 801-292-1156 Legislative Coalition for People with Disabilities SPECIAL EDUCATION COMMITTEE FACT SHEET NEED DESCRIPTION Preschool Funding Uniform School Fund $2,200,000 ( We are asking for an increase in the pre-school weighted pupil unit (WPU) formula from 1.205 WPU to 1.47 WPU. ( The current funding formula is 1.205 WPU x December 1st count x WPU amount appropriated by the legislature. This funding formula continues to fall short of the actual cost in serving preschool-aged children with disabilities on a yearly basis. (The actual cost for serving pre-school age children is 1.47 WPU according to the study conducted by the Utah State Office of Education, Early Intervention Research Institute at Utah State University, and Utah State Special Education Finance Task Force to identify the actual cost per student in preschool. ( Local school districts will no longer need to supplement the preschool funding with other sources set aside to serve school-aged students with disabilities. (Local education agencies will have a predictable and stable base for budgeting. ( This will stop the erosion of the WPU value. For Further Information Please Contact Legislative Coalition for People with Disabilities Special Education Committee Lisa Wade, Chair - 801-485-4756 Linda Smith - 801-363-3300, ext. 15 Legislative Coalition for People with Disabilities CHILDREN'S DEAF/BLIND ISSUES COMMITTEE FACT SHEET NEED DESCRIPTION Growth $ 575,100 Utah Schools for the Deaf and the Blind provides services for children through- out the State of Utah. Since 1995-96, the number served has increased from 960 to 1400. USDB would hire additional staff to provide instruction and consultation services to children in rural and outreach locations. This request includes the current expense and travel budget for them. USDB Orientation and Mobility Specialist $ 63,200 This request provides 1.25 additional orientation and mobility specialists to teach travel techniques to children who are blind. Currently, USDB has 4.75 FTE's to cover the entire State of Utah, with an average caseload of 30 students. This caseload plus travel does not allow sufficient time for instruction. USDB Vocational Program $ 242,900 Traditionally, people with disabilities have a lower employment rate. A survey of individuals in Utah who are deaf/hard of hearing and blind/visually impaired was conducted by Mountain Plains Regional Resource Center in 1998. The study found that only 50% of individuals who are blind/visually impaired and 75% of individuals who are deaf were employed. This request provides program personnel for interpreting and academic support, and living arrangements for up to 10 students, aged 18-21, to live in USDB housing while attending vocational training at Davis or Ogden/Weber ATC programs. USDB Student Transportation $ 113,000 Transportation of students with sensory impairment requires door-to-door service and crosses district boundaries. USDB has decreased its transportation expense through contracts with private companies for student transportation. This request would help cover existing bus route expenses and add one more route allowing children to spend less time on the bus. USDB Motor Pool Cost $ 153,100 USDB staff travel 400 or more miles per week in order to provide instruction, visit families and consult with local school district programs. In most areas of the State, vehicles from State Fleet Services are not available on the every-day schedule USDB staff requires. Staff ends up using their own cars, and USDB reimburses them at 32.5 cents per mile. This request is for an addition of 8 vehicles, which would reduce cost of mileage reimbursements. For Further Information Please Contact Legislative Coalition for People with Disabilities Children's Deaf/Blind Issues Committee Linda Smith - 801-363-3300, ext. 15 Legislative Coalition for People with Disabilities TRANSPORTATION COMMITTEE FACT SHEET NEED DESCRIPTION - - - - - N O F A C T S H E E T - - - - - For Further Information Please Contact Legislative Coalition for People with Disabilities Transportation Committee Steve Gillmor, Chair - 801-364-6901 Celia Crow - 435-753-5353 Legislative Coalition for People with Disabilities BILLS FACT SHEET MULTIPLE AGENCY/COMMITTEE NEED DESCRIPTION Long-Term Interagency Training for Disability Service Providers $ 495,000 Sponsor: Rep. Afton Bradshaw This request will provide ongoing training for 150 certified supported employment personnel, 150 behavior support specialists and 50 certified interpreters for the deaf. Supported employment allows the most significantly disabled to be employed. Behavior support specialists work with individuals who have severe behavior problems. Both specialists might enter the field by being paid as little as $7.50 or more an hour. The interpreter part will provide inservice training to interpreters. This is a multi-agency bill. Funding will be appropriated to the Center for Persons with Disabilities at Utah State University to disseminate through a competitive bid process to training programs in Utah. For Further Information Please Contact Legislative Coalition for People with Disabilities Linda Smith, Co-Director - 801-363-3300, ext. 15; Pager - 801-241-1127 Kris Fawson, Co-Director - 801-489-9396; Pager - 801-241-1066 HEALTH CARE COMMITTEE NEED DESCRIPTION Procurement Code Requirements Health Benefits Sponsor: Sen. Ed Mayne Requiring businesses to provide health care insurance coverage to employees as a condition for contracting with the state under certain circumstances. Prescription Drug Coverage and Formularies Sponsor: Sen. Peter Knudson Establishes a minimum standard for access to prescription drugs that are excluded from an insurance companies formulary. For Further Information Please Contact Legislative Coalition for People with Disabilities Health Care Committee Tina Johnson, Chair - 801-566-5075 Tiffany Pryor - 801-266-7508 REHABILITATION COMMITTEE NEED DESCRIPTION Appropriation for Assistive Technology $ 421,579 Sponsor: Sen. Peter Knudson This funding will be used to purchase assistive devices through Independent Living and other similar programs. It will also be used to increase the Utah Center for Assistive Technology (UCAT) Director position to full time, and to purchase devices for a lending library. Service Providers for Adults Living in Utah Who Are Deaf/Blind $ 360,000 Sponsor: Rep. Gerry Adair To create a new program, funding service providers for adults who are deaf/blind living in Utah. This will help individuals to connect with the world, live more independently, and communicate and interact with others. For Further Information Please Contact Legislative Coalition for People with Disabilities Rehabilitation Committee Corey Rowley, Chair - Bus: 801-463-1592; Pager: 800-612-6483 Leslie Gertsch, - 801-292-1156 HOUSING COMMITTEE NEED DESCRIPTION Olene Walker Housing Trust Fund $ 5,000,000 ( Affordable housing is a major obstacle in our community. ( 70% of people with disabilities live at or below the poverty level. ( Subsidies for construction of affordable housing are critical. ( This figure represents $1.5 mil in base funding, and $3.5 mil in supplemental funding. For Further Information Please Contact Legislative Coalition for People with Disabilities Housing Committee Steve Gillmor, Chair - 801-364-6901 Celia Crow - 435-753-5353 The Legislative Coalition for People with Disabilities BYLAWS Article I Purpose I. Purpose 1.01 INTENT OF THE COALITION The Legislative Coalition for People with Disabilities, hereafter referred to as LCPD, has been established by the Utah Governor's Council for People with Disabilities to advocate for individuals with disabilities. The Intent of the LCPD is to represent the interests of all disability areas and the full range of ages. Its purpose includes: in the State of Utah. A. To advocate by educating the Governor of Utah, State Legislators, Congressional Delegations, Agencies, Departments, Divisions and the general public, about legislative issues and funding affecting people with disabilities. B. To advocate by coordinating efforts with others who work to improve conditions for people with disabilities. C. To educate volunteers to be effective advocates through training and mentoring. Article II Membership II. Membership 2.01 MEMBERSHIP CRITERIA/PROCEDURES Membership in the Legislative Coalition for People with Disabilities shall represent all people with disabilities. Membership may be granted to consumers, parents, relatives and other interested advocates upon the following: A. Membership forms must be filled out by all individuals wishing to be considered a member of the LCPD. B. Official membership is in effect thirty (30) days after completed membership form is filed at the LCPD office. 2.02 NON VOTING MEMBERS The LCPD staff and government employees whose employment relates to disabilities are considered non-voting members and shall serve as resources and provide technical assistance to LCPD members and committees. Article III Meetings III. Meetings 3.01 ANNUAL MEETING The annual meeting of the LCPD shall be held in the Spring of each year, or as soon as practical thereafter. The purpose of the annual meeting shall be to elect officers and to conduct other business as needed. 3.02 REGULAR MEETINGS The LCPD shall hold regular meetings at least six (6) times a year. Meetings during the Legislative session may occur weekly. 3.03 SPECIAL MEETINGS Special meetings may be called by the Executive Committee. 3.04 EXECUTIVE SESSIONS All regular and special meetings of the LCPD shall be open to the public and the media. The LCPD may adjourn to executive session upon a two-thirds (2/3) vote of the quorum for the purpose of maintaining privacy or confidentiality for individuals. 3.05 RULES OF ORDER Business shall be transacted in accordance with Robert's Rules of Order Newly Revised. Article IV Voting IV. Voting 4.01 VOTING ELIGIBILITY An individual must file an LCPD Membership form thirty (30) days before voting privileges are established. 4.02 QUORUM Voting members of the LCPD present at a regularly called meeting may transact business and shall constitute a quorum. 4.03 APPROVAL OF ISSUES Issues receiving at least ninety (90) percent favorable vote shall be supported by the LCPD. A. Issues receiving a unanimous vote shall be thus recorded. B. Issues that fail to receive at least ninety (90) percent favorable vote may continue to be monitored by the LCPD upon majority vote to do so. Article V Elections V. Elections 5.01 NOMINATIONS The Chair of the LCPD shall appoint a Nominating Committee in January of an election year. A. The nominating committee shall consist of no fewer than three (3) and not more than seven (7) members. B. Individuals considered for nomination must give their consent in advance and in writing. 5.02 ELECTIONS The Chair, Vice Chair and Secretary shall be elected by a majority vote of the members present at the annual meeting of the LCPD. A. The nominating committee shall present the slate of recommended officers one (1) month prior to the annual meeting. B. Additional nominations may be made from the floor C. Nominees from the floor must be present and consent to nomination or the person presenting him or her must provide written consent to the Nominating Committee Chair. 5.03 TERM OF OFFICE Officers shall be elected to serve for a term of two (2) years, or until successors are duly elected upon vacation of office. A. Individuals elected to serve as Chair, Vice Chair or Secretary may not serve more than one (1) term in the same office, but may be eligible again after an interval of one (1) term. B. An officer who assumes an unexpired term is eligible for election to serve one (1) additional term. 5.04 VACANCIES The LCPD Chair may make appointments to fill vacancies. Article VI Membership of Executive Committee VI. Membership of Executive Committee 601 CHAIR The Chair shall preside at the LCPD meetings; shall see that all recommendations of the LCPD are transmitted; shall be or may designate the spokesperson for the LCPD to the public and the media; shall make official appointments; shall give direction to the work of the LPCD; and shall perform other duties as may be assigned by the action of the LCPD, or as may be necessary to carry out the responsibilities of the Chair. At the end of his or her term, the Chair shall assume the position of Immediate Past Chair and continue to serve as a member of the Executive Committee. 6.02 VICE CHAIR The Vice Chair shall counsel with the Chair in carrying out LCPD duties, and perform the duties of the Chair in his or her absence. The Vice Chair shall serve as Parliamentarian, as Chair of the Bylaws Committee when necessary and help appoint the committee chairs. 6.03 SECRETARY The secretary shall, with assistance from the LCPD Staff, oversee the recording of the minutes of LCPD meetings; give notice of meetings; keep records of attendance; help select LCPD committee chairs and perform other duties as assigned by the LCPD Chair. 6.04 PAST CHAIR The outgoing Chair will assume the position of Past Chair, and shall provide continuity to LCPD and support to the Chair as requested. The Past Chair will serve on the Nominating Committee. 6.05 CHAIR REPRESENTATIVE The Chairs of all committees shall meet together to elect one (1) individual to serve as a member of the Executive Committee. The election will be held during the Summer Leadership Training Session. The Chair Representative serves a term of one year, and may be re-elected. 6.06 LCPD STAFF The LCPD Staff shall be non-voting members of the Executive Committee. 6.07 TERMINATION OF AN OFFICER Any officer of the LCPD may be terminated by a majority vote for just cause. A. This action may be appealed by the individual terminated at a meeting of the Executive Committee and committee chairs. B. Action may be taken by a majority vote of those present. Article VII Responsibilities of Executive Committee VII. Responsibilities of Executive Committee 7.01 ROLE OF THE EXECUTIVE COMMITTEE The role of the Executive Committee will be to assist in planning, to discuss organizational needs and concerns, and to come to consensus before speaking for the LCPD on issues. A. The Executive Committee shall make a report at the regular LCPD meetings. B. The Executive Committee may designate ad hoc committees as deemed necessary. C. The Executive Committee shall consider all committee chair appointments and make recommendations to the LCPD Chair for official appointment. 7.02 MEETINGS OF THE EXECUTIVE COMMITTEE Meetings of the Executive Committee may be called at any time by the Chair, or Vice Chair in the event of absence or incapacity of the Chair. Announcements of all called meetings shall be made to each member of the Executive Committee. Article VIII Committees VIII Committees 8.01 LCPD COMMITTEES The Executive Committee shall appoint chairs for the LCPD Committees. The LCPD Committees shall include but are not limited to: (1) Children's Health Services (2) Health Care (3) Services for People with Disabilities (4) Mental Health (5) Rehabilitation (6) Special Education (7) Special Education - Deaf and Blind Issues (8) Higher Education (9) Housing and Transportation (10) Screening Committee for Awards Nominations (11) Other Committees as needed. 8.02 SPECIAL COMMITTEES The Executive Committee may designate ad hoc committees as deemed necessary. 8.03 COMMITTEE CHAIRS Committee chairs are officially appointed by the LCPD Chair. Each committee chair is responsible to oversee work of the committee and to provide leadership for the accomplishment of the committee's goals. Committee Chairs are responsible to make official committee recommendations to the LCPD membership. A. A usual term of appointment for committee chairs shall be one (1) year. B. Co-Chairs may be appointed. 8.04 COMMITTEE MEMBERS LCPD members may serve on committees of their choice. A. Each member shall have one (1) vote on matters before the committee. B. Committee members shall represent positions as determined by committee vote. 8.05 COMMITTEE REPRESENTATION The Executive Committee shall provide for special committee representation as deemed appropriate. A. The immediate past president shall serve as a member of the Nominating Committee. B. A member of the Executive Committee shall serve as a member of the Screening Committee for Awards Nominations. Article IX Administration IX Administration 9.01 DIRECTORS The Director(s) of the LCPD shall be hired to carry out the business of the LCPD and, at the request of the Executive Committee, be the spokesperson(s) for the LCPD. Article X Funds and Property X Funds and Property 10.01 FUNDS Any funds made available by the grant from the Utah Governor's Council for People with Disabilities and contributions made to the LCPD shall be spent in accordance with budgets, guidelines and safeguards required by the grant or contributors. Accounting and disbursement of funds shall be the responsibility of LCPD staff or other designated parties in accord with prevailing laws and practices. The Executive Committee shall review monthly financial reports and the annual audit. 10.02 PROPERTY Property made available for use by the LCPD shall be directed by the LCPD, with the LCPD Staff serving as custodians of the property. 10.03 PERSONAL BENEFIT No such funds or property shall be used for the personal benefit of LCPD members, its staff, or committee members assisting the LCPD. A. Reimbursement may be made for actual expenses incurred in doing the work of the LCPD with prior authorization by the Director(s). B. All reimbursements are contingent on availability of funds. Article XI Policies and Procedures XI Policies and Procedures 11.01 POLICIES AND PROCEDURES The Executive Committee shall consider and adopt policies and procedures that establish criteria, protocols, nominating procedures and other guidelines as needed. A. Policies and procedures will be presented to the LCPD membership for comment and shall be considered official after a thirty (30) day comment period. B. The Policies and Procedures Manual will be made available at all LCPD meetings. Article XII Amendments of Bylaws XII Amendments 12.01 AMENDMENTS OF BYLAWS Bylaws may be amended by a majority vote of the quorum at any regular meeting. Notice shall be given in the regular meeting preceding the LCPD meeting in which bylaw amendments will be considered. Amendments shall become effective immediately after approval. Bylaws Committee will consider recommendations which receive a two-thirds (2/3) vote in any regular meeting of the LCPD. Article XIII Changes or Dissolution XIII Changes or Dissolution 13.01 CHANGES IN THE LCPD In the event that administrative or legislative changes alter relationships or terminology, but do not materially change the purpose or composition of the LCPD, the LCPD may continue as an entity and adapt to these changes through amendments to the bylaws. Clarification may be requested from the Utah Governor's Council for People with Disabilities, or other pertinent parties. 13.02 DISSOLUTION In the event that administrative or legislative changes make this coalition no longer a viable entity to serve as an advocate for people with disabilities in the State of Utah, the LCPD may be dissolved by a two-thirds (2/3) vote of the LCPD. A. In the event of dissolution, funds and/or property held in the name of the LCPD shall be transferred to the Governor's Council for People with Disabilities or the source from whence they came. B. The LCPD's records shall revert to the Governor's Council for People with Disabilities. C. In the absence of other responsible action, any of the last group of officers or any three (3) former LCPD Members may request that appropriate dissolution action may be taken. GOLDEN RULES OF ADVOCACY From: A Guide for the Powerless - and Those Who Don't Know Their Own Power; Samuel Halperin, Institute for Educational Leadership, Washington, D.C., 1981. 1. Be fair toward public officials. With very rare exceptions, they are honest, intelligent, and want to do the right things. Your job is to inform them effectively about what you think is right. 2. Avoid cynicism. Government and politics may be faulty, but so is every profession. A disdainful attitude is an expensive luxury these days for it poisons the well and immobilizes the will to work for social betterment. Those who live on an island should not make an enemy of the sea. Or try a Sam Rayburn maxim: "Never spit chewing tobacco on the cake you hope to eat yourself." In short, the political process we too often disparage is still our best hope for effecting constructive social change. 3. Be understanding. Put yourself in the public official's place. Try to understand his/her problems, outlook and aims. 4. Be friendly. Don't contact public officials only when you want their help. Take pains to keep in touch with them throughout the year, every year. 5. Be reasonable. Recognize that there are legitimate differences of opinion. Never indulge in threats. 6. Be thoughtful. Commend the right things public officials do. 7. Be charitable. The failure of public officials to do what you wanted may be your responsibility if you have not done a good job in preparing, presenting and following through on your case. Every public official knows that you can express your opinion at the ballot box. 8. Be constructive. You don't like to be scolded, pestered or preached to. Neither do public officials. Present an alternative, a new way of looking at the problem, a new formula, and not merely negative carping. 9. Be realistic and persistent. Remember that controversial legislation and regulation usually result in a compromise not wholly satisfactory to any one contending party. Progress, although incremental, is no less real - and may even be more enduring for its evolutionary development that builds wider support. 10. Be practical. Recognize that each lawmaker has commitments and that a certain amount of vote-trading goes on in all legislatures. Don't chastise lawmakers who normally support you if they vote against one of your bills. This doesn't necessarily mean that they have deserted your whole program. Give them the benefit of the doubt; the lawmaker will appreciate it and remember that you did. And remember that while some votes may be firmly committed there will be others - both sides of the partisan aisle - that can be swayed on the basis of sound arguments properly presented and well documented. 11. Be a good opponent. Fight issues, not personalities. 12. Be informed. Do your homework. The mere fact that you want a public official to adopt your position won't be enough. 13. Be trustworthy. When promises are made, keep them. If you tell a public official you'll do something, stick to your end of the bargain. 14. Be loyal. Never leave officials out on a limb by changing your position after they have publicly taken the position that you have urged upon them. 15. Evaluate and weigh the issues: Many bills are tossed into the legislative hopper "by request" and are never intended to become law. So don't criticize lawmakers for every bill which is introduced, and don't sound the panic alarm until you're sure a bill or legislative action is "for real". 16. Be discreet. Participation in discussions about lawmakers being "bought" or "paid off" is worse than useless. You have absolutely nothing to gain and everything to lose by such speculations. Furthermore, chances are extremely high that it isn't true. 17. Be generous. Remember that in success everyone can claim credit. As Senator Wayne Morse used to remind his colleagues in the years when federal education legislation was exceedingly difficult to enact: "Victory has a thousand fathers; defeat is an orphan." Thank policymakers for their positive acts at least as often as you inquire why they went wrong. Let them know you are watching their record closely. 18. Be visionary. Especially when it comes to the political process, there is seldom an absolute and final defeat. A loss with one member may lead to finding a better champion elsewhere. Failure in committee may be overturned on the legislative floor. Debate in one chamber may often be reversed in the other. Victory may be snatched from the jaws of defeat in a conference committee. And so on. 19. Work - and be persistent. In the immortal words of Charlie Chan: "Everything cometh to he who waiteth, as long as he who waiteth worketh like hell in the meantime!" On this final point alone volumes could be written, adorned by lively case studies. All the political assets, stamina and persistence are surely the most underrated, least dispensable ingredients of success. Section 4 Boston Center for Independent Living Legislative Advocacy Training Program How the American System of Government Works The American System is based on a balance of power. There are three branches of government: executive, legislative, and judicial. Each branch checks and balances the others so that no one branch can assume too much power. There are three levels of government. Each level has an executive, legislative, and judicial branch. Federal (National) - The president presides State - The Governor presides Local - The Mayor (or Chair of the Board of Selectmen) presides There are two major parties: The Democratic Party The Republican Party There can be dozens of "independent" parties, such as the Socialist Worker's Party and the Libertarian Party The Federal System of Government There are two levels of government: The House of Representatives (Representatives or Congressmen/Congresswomen) The Senate (Senators) Every state has two Senators. The number of representatives is based On the population of each state. There is one representative for approximately 500,000 people For example: In the American System of Government You will get into trouble only if you cause physical harm to a person or a person's property. You will not get into trouble if you: * Ask questions * Challenge people in leadership positions * Write letters to people in leadership positions, * Including teachers, doctors, politicians, and police officers The American System is Completely Participatory Every citizen can: Run for Public office Vote in every election Influence the way elected officials make decisions People in Power Expect Individual Citizens to: Write them letters Visit them in their offices Call their offices The American System Encourages people to speak out. Ask questions Request Additional Information Ask why decisions are made THE SEPARATION OF POWERS LEGISLATIVE BRANCH (CONGRESS) Makes the laws EXECUTIVE (PRESIDENT) Carries out and enforces the laws. JUDICIAL BRANCH (COURTS) Judges laws and punishes lawbreakers HOW OUR REPRESENTATIVE DEMOCRACY WORKS THE PEOPLE OF THE UNITED STATES ELECT PRESIDENT APPOINTS Legislative Advocacy Training Program AGENDA 1. ISSUES OF EMPLOYMENT How you can be an effective Advocate 2. THE TOOLS OF ADVOCACY Calling your Legislator Writing to your Legislator Meeting with your Legislator Testifying at the State House 3. HOW THE BUDGET PROCESS WORKS BREAK 4. HOW A BILL BECOMES A LAW 5. WORKING THE PRESS Table of Contents ( HOW A BILL BECOMES A LAW ( TIMING IS EVERYTHING IN POLITICS ( LAWMAKING IN MASSACHUSETTS ( FREQUENTLY ASKED QUESTIONS ( 1999-2000 LEGISLATIVE DIRECTORY ( BOSTON GLOBE ARTICLE "WHO WILL CARE FOR CHARLIE AND HARRIETT?" ( AN ACT TO SUPPORT CITIZENS WITH DISABILITIES THEIR FAMILIES (h2902) ( THE TEN INFORMAL RULES OF LOBBYING PERSONAL CONTACT KEY TO SUCCESSFUL MEETING YOUR LETTERS COUNT SAMPLE LETTER TO LEGISLATOR SAMPLE CALL TO LEGISLATOR SCRIPT SAMPLE TESTIMONY SAMPLE LETTER TO THE EDITOR ( LIST OF HELPFUL ADDRESSES AND PHONE NUMBERS - QUESTIONNAIRE & EVALUATION FORM (PLEASE COMPLETE) - The Ten Informal Rules of Lobbying, or Everything You Always Wanted To Know About Lobbying, But Never Thought To Ask 1. Consider yourself an information source. Legislators have limited time, staff, and interest on any one issues. They can't be as informed as they might like on all the issues - or the ones that concern you. You can fill the information gap. 2. Tell the truth. There is no faster way to lose your credibility that to give false or misleading information to a legislator. 3. Know who else is on your side. It is helpful for a legislator to know what other groups, individuals, state agencies and/or legislators are working with you on an issue. 4. Know the opposition. Anticipate who the opposition will be - organized or individual. Tell the legislator what their arguments are likely to be and provide them with answers and rebuttals to those arguments. 5. Make the legislator aware of any personal connection you may have. No matter how insignificant you may feel it is, if you have friends, relatives, and/or colleagues in common, LET THEM KNOW. Our legislative process is very informal and though it may make no difference in your effectiveness, it may make the difference. 6. Don't be afraid to admit you don't know something. If a legislator wants information, you don't have or asks something you don't know, tell them and then offer to get the information they are looking for. 7. Be specific about what you are asking for. If you want a vote, information, answers to a question - whatever it is - make sure you ask for it directly and get an answer. 8. Follow up. It is very important to find out if your legislator did what he/she said they would. It is very important that you then thank them or ask for an explanation as to why they did not vote, as they said they would, etc. 9. Don't "burn any bridges". It is very easy to get very emotional over issues you feel very strongly about. That's fine, but be sure that no matter what happens you leave your dealings on good enough terms that you can go back to them. Remember, your strongest opposition on one issue may be your strongest ally on another. 10. REMEMBER YOU ARE THE BOSS! Your tax money pays legislators' salaries, pays for the paper they write on, the phone they call you on. YOU are the employer and they are the employee. You should be courteous, but don't be intimidated. They are responsible to you and nine times out often, legislators are grateful for your input. (From the Maine Women's Lobby) ??????????????????????????????????????????????????????????????? FREQUENTLY ASKED QUESTIONS ??????????????????????????????????????????????????????????????? Q. Where do I find the text of a bill pending before the Legislature? A. We do not yet publish the text of pending legislation on the Internet. It is a matter that is currently under discussion. Copies of the printed bills are available from: The Legislative Document Room Room 428 State House Boston, MA 02133 (617) 722-2860 The Document Room does not have a mail facility, so please send them a self-addressed stamped envelope with your request. Q. How can I find how my legislator has voted on a particular issue? A. Roll Call votes are recorded in the journal of the branch that voted on the matter. The Senate Journals are available from March 12, 1998, to the present. House Journals are not yet available. If the journal you need is not available here, then copies of the corrected proofs of the journals are available about two weeks after the day of the session and can be obtained from: The Legislative Document Room Room 428 State House Boston, MA 02133 (617) 722-2860 The Document Room does not have a mail facility, so please send them a self-addressed stamped envelope with your request. Also, the Clerks of each branch maintain a book of all the roll call votes recorded in a legislative session. That book is available for viewing within their offices. The Senate Clerk is located in Room 335 in the State House, the House Clerk in Room 145 of the State House. Q. How can I search through the text of the budget? A. The table of contents page for each of the last two year's fiscal budgets have a search feature built into them. You can find the Fiscal 1999 budget at http://www.magnet.state.ma.us/legis/senate/99budgetlcontents.htm. You can find the Fiscal 1998 budget at http://www.magnet.state.ma.us/legis/senate/98budgetlcontents.htm. Q. When were the files I view last updated? A. The date to which all but the General Law files are up-to-date is published on the General Court's House Page (http://www.magnet.state.ma.us/legis/legis.htm). The date to which the General Laws are up-to-date is published on the home page for the General Laws (http://www.magnet. state.ma.us/legis/laws/mgl/index.htm). Q. How often is your information updated? A. We are currently running a procedure which provides nightly updates of the General Court's files. Accidents do happen and bad actions can get posted on a bill (or actions may not yet have been posted when we converted the files), so please be sure to verify your information (especially if there is no journal page posted after the action). Q. How can I search for a particular General Law? A. There is a search facility to perform Boolean searches included on the home page for the General Laws (http//www.magnet.state.ma.us/legis/laws/mgllindex.htm). It is located just after the listing of the five parts that comprise the General Laws. The results of the search will provide you a link to the files that satisfy the search as well as show you the first 250 characters of the text of the files that satisfy your search. Search results will also provide a further search box to diversify or help narrow your search. Learning the Budget Process Timing is Everything in Politics No one has time to waste. In order to be an effective advocate, it is important to know the Legislative cycle and how and when to impact the process. The budget is the most important bill to move through the Legislature each year. Understanding the budget process can enable advocates to act with the "biggest bang for the buck." The Massachusetts budget runs on a fiscal year cycle that begins July I and ends June 31. The following time plan is useful for advocates planning their legislative calendars. September - December Where is the budget? The Administration begins the budget creation process. Each agency and department submits a budget to its executive office. For example, the Department of Mental Retardation, Massachusetts Rehabilitation Commission and Massachusetts Commission for the Blind identify their priorities and submit their budgets for the next fiscal year to the Executive Office of Health and Human Services (EOHHS). Then all the Executive Offices, e.g., Health and Human Services, Consumer Affairs, Elder Affairs, submit their budgets to the Executive Office of Administration and Finance, which prepares the Administration's (Governor's) version of the total state budget. Sometime during this period the Administration holds open budget hearings, and takes public testimonies. What your agency should be doing Meet with the commissioners of your respective agencies to request that your priority issues become the priorities of the respective Commissioners and the Secretary of Health and Human Services. Prepare position papers and provide resources to support your issues. Begin to meet with those legislators who have been consistently supportive of your issues to share with them the priority issues of your agency. Also, attend budget hearings, and if possible arrange to testify. What you should be doing. This is a good time for families to send letters to the Commissioners, the Secretary of Health and Human Services and the Governor's office. Describe the needs of your family. For example, if you need after school care to keep your family member home, tell them this. If you need a ramp, a tutor, or a full residential program, explain that too. Personal letters are a very effective weapon in the advocacy arsenal. In the Legislature -- Families and local ARCs take on the critical role of laying the grassroots constituency groundwork with Senators and Representatives. Get to know your legislators! Meet with them, call them, write them. Tell them what your needs are, that you are going to need their help when the budget comes before the Legislature. Also, visit those legislators you don't know very well. It is always important to cultivate new legislative supporters. It is only human nature that legislators are most responsive to people they know. If possible, get to know them before you ask for millions of budget dollars. January - March Where is the budget? According to the Constitution of the Commonwealth of Massachusetts, the Governor must present a proposed budget for the next fiscal year to the legislature by the third Wednesday of January. Copies of the Governor's budget, known as House 1, are available to the public in the State House (Document Room 428). The Governor's proposed budget goes first to the House Ways and Means Committee for review and consideration. The Legislature does not have to agree with the amounts in any of the line items in House 1, and in fact, the House and Senate will likely propose their own versions, often using House I as a baseline. But it is always helpful if your priority issue is already in the Governor's budget. The House Ways and Means Committee will schedule public hearings and take testimonies from groups and individuals prior to releasing a budget document to the full House. What your agency should be doing. Move into full campaign mode. Attend public budget hearings and if possible, arrange to testify. Contact legislators; initially concentrate on House Ways and Means members, but by mid-February move on to the full House of Representatives. It is helpful to do an analysis of the budget comparing last year's line items to this year's as well as identify trends, initiatives and priorities of the administration. Most advocacy groups then concentrate on increasing the amounts in each line item according to the identified budget priorities. But you can also work to strike language that is deemed harmful to you population. If possible, organize weekly visits to the State House to advocate for your priorities. It is important to provide fact sheets and other supporting documents to legislators and their staff. What you should be doing. This is a critical time to contact your legislators. Call them, write letters, and meet with them in their district offices or at the State House. Again, tell them about your family and what your needs are. Most legislators have little or no knowledge of your particular issue. If the only constituents they hear from are those families who want to keep their family members in a large institution, this is how they will vote. THEY MUST HEAR FROM YOU. April - June Where is the budget? In spring the House Ways and Means Committee releases its version of the proposed state budget to the full House of Representatives for deliberation and debate. During this time the House can, and often does, amend the House budget. After the budget is passed by the House, it is sent to the Senate Ways and Means Committee. The Senate has the right to put together its own budget; it does not have to agree with either the House or the Administration versions. The Senate Ways and Means Committee will hold public hearings and take testimonies before preparing its version of the budget and releasing it to the full Senate. As in the House, the Senate amend, strike, or add sections prior to passing the budget. Generally, the House and Senate pass differing versions of the budget. A six-member Conference Committee (made up of the House and Senate Ways and Means chairs and vice chairs, and a senior minority member of each chamber) convenes to resolve differences and draft a compromise budget proposal. The Committee releases the compromise budget for a full vote. The House and Senate vote; upon enactment the budget is sent to the Governor for his signature. What your agency should be doing. Work directly with legislators and their staff to influence policy. Provide fact sheets and other supporting documents. Meet with as many legislators and staff as possible to advocate for your priorities. Continue to organize weekly visits and urge as many people as possible to join you. Attend budget hearings and, if possible, arrange to testify. What you should do. Call, write and visit your own senators and make your case. It is very important that you contact your legislators. July - August Where is the budget? After the Governor receives the enacted budget, he has ten working days to sign it into law. (This period often extends into early August.) He can veto line items and/or strike language and dollar amounts. The Legislature can override the Governor's vetoes. However, the Speaker of the House of Representatives and the President of the Senate must agree to take up each veto for an override vote. Overrides require a two-thirds vote of both the House and Senate. What your agency should do. If you want the Governor to veto certain items, write to the Governor requesting those line items or language you want vetoed. Alert organization members if there are issues or language that is harmful to the persons you represent and ask them to call the Governor's office and urge vetoes of those items. If your want the House and Senate to override a veto, call and meet with individual legislators, as well as with the offices of the House Speaker and Senate President. What you should do. If you receive an alert that there is language in the budget that would be harmful, make individual constituent calls to the Governor's office. These calls can impact the likelihood that the Governor will veto an item. If your want the House and Senate to override a veto, make individual calls to legislators, as well as to the offices of the House Speaker and Senate President. Good luck with your advocacy efforts! KEY TO A SUCCESSFUL MEETING THE KEY TO A SUCCESSFUL MEETING ... PLANNING The purpose of a meeting with your Senator or Representative is to persuade him/her to support your issue, bill cause, etc. Since the opportunity is an infrequent occurrence you will want to make every minute count. The following planning steps have been proven useful to participants at prior training sessions. Once you have decided who will attend the meeting with you, include them in a planning session to structure the agenda you will follow during the meeting. ATTITUDE: Think of your legislator as an honest, intelligent person wanting to do the right thing. Try to understand that he or she has to make decisions about thousands of issues during a legislative session and has limited time to spend on any one issue. Consider yourself an information source about the special issues affecting individuals with disabilities. Try to "package" the information in a way that will be remembered; usually an anecdote about one individual will be more powerful than a page of statistics. ISSUES: Use fact sheets, or issue papers. Decide how you will briefly introduce each of the issues during the meeting. Use personal stories to illustrate the impact on your life. WHO WILL SAY WHAT: Each person in your group will want to say something about the issue. Decide in advance who will say what. Consider one person being the lead spokesperson, introducing everyone and keeping the discussion moving. If you plan an article for your local newspaper or affiliate newsletter try to get a quote from your Senator or Representative. FACTS: You will not be able to include all the information from the fact sheets. Decide in advance which facts/data/statistics you will use to make your points. QUESTIONS: Anticipate questions from your legislator or the staff member, and have the answers ready. If you don't know the answer to any question, say "I don't know that answer, but I'm sure I can get the information for you." (And then let someone know so that the answer can be obtained.) OPPOSITION: Recognize that there are at least two sides to every issue and be open and candid about what "the loyal opposition" might have said. State your views and the reasons for your position. WRITTEN MATERIALS: Decide what written material to leave to be referred to later. A brochure about your parent group or organization, newspaper clippings about individuals needing services, etc. could be added to the fact sheets. Leave your name, address and telephone number so you can become a contact person. PERSONAL CONTACT One of the most effective ways to influence the decisions of a legislator is personal visits. Frequent contacts are necessary to associate your face and name with your cause. Whether you plan to meet one-to-one or with a group, plan the meeting and develop an agenda to cover all the points you wish to make. Pick just one or two issues to discuss. If it will be a first time meeting, select an issue about which he/she may be sympathetic - or at least open minded. Here are some simple steps to follow: ( Make an appointment. If you drop by without an appointment, you may wait, or you may force him/her to postpone something else, thereby creating negative feelings before you begin. BE ON TIME. ( Always introduce yourself, even at a second or third meeting. Don't put the legislator in the awkward position of having to grope for your name. ( Get down to business quickly Begin on a positive note State the Bill number, title and author, or stale the issue, your position, and what you want his/her to do. ( Thank him/her for previous support. Legislators like to know that you know their record. If you don't know the record thank him for taking the time to meet with you. ( Be specific, be clear and be simple. Provide information about how this issue impacts his/her constituency and people throughout the state. Use fact sheets, charts, statistics, etc. ( Use personal stories and anecdotes. Remember, your job is to persuade and a personal story will leave an image that the legislator will remember when he/she votes on the issue. ( Ask what you can do. Ask if you can provide further information, arrange a tour of a program, contact others. ( Leave written materials. Your legislator will tile the materials and refer to them when questions come up later and/or when he/she votes on the issue. ( Thank him/her again. YOUR LETTERS COUNT Your letter is a permanent record of your position. In a letter writing campaign, ten, twenty or fifty letters can be perceived as a groundswell of support. Timing is important - your organization will alert you. If you write too soon, you may not capture the attention of the legislator, and if you write too late, the decision may have already been made. Most legislators are conscientious about their mail and consider the views of their constituents when they deliberate an issue. HOW TO WRITE: ( Write your own letter. Use your own words to express your thoughts. Use personal stationary or business letterhead if possible. Typed letters are easier to read, but handwritten letters are acceptable if they are legible. ( State your reason for writing. Explain how the issue affects you and those around you. Remember the personal anecdote. ( Use the Bill number, author and title, if you are writing about legislation. ( Clearly state what actions you are seeking - support or oppose. ( Refer to research, data, statistics, etc. Give your legislator good reasons to support your position. ( Be reasonable, specific and positive. Don't engage in threats or ask the impossible. Ask your legislator to state his/her position on the issue in a written reply. ( Thank your legislator for the time and attention, for the support for the vote. Put your return address in your letter. Envelopes can be thrown away. ( Send copies of your letter to your organization so that they can maintain a file of all correspondence. ( Write again. When you establish a record of correspondence you will develop clout on future issues. Your personal Stationary SAMPLE LETTER TO LEGISLATOR DATE Legislator Room # State House Boston, MA 02133 Dear (Name of Legislator) I am asking for your support of H2902, An Act To Support Citizens With Disabilities and Their Families. This bill is meant to increase the responsiveness of human service and education agencies in the way they serve individuals with disabilities or chronic illnesses who are looking for home based flexible services. (insert a paragraph that briefly describes your family's situation. Describe the services your family could use that would make you family's life easier.) People with disabilities want to live at home with their family. To do so is cost effective and humane. I hope we can count on your support. Sincerely, Your Signature Name Address City, State Zip Code (Area Code) Phone Number SAMPLE PHONE SCRIPT CALLER - Hello, Pd like to speak with (name of legislator), Pm a constituent (give name and address). STAFF - He/She is not available right now, could I or (staff) help you? CALLER - Yes, thank you. I want to urge (the legislator) to support House 2902, An Act to Support Citizens with Disabilities and Their Families. This bill is very important to me. I am disabled or I am a parent of a child with a disability (tell the staff person what the bill would mean to you.) STAFF - I'll relay your concern to the legislator. SAMPLE TESTIMONY House 2902 - An Act to Support Citizens With Disabilities and Their Families Good morning. Thank you for giving me the opportunity to testify. My name is Charlotte O'Brien and I wish to testify on House 2902, An Act to Support Citizens with Disabilities and Their Families. This bill has been chosen as the top priority bill by the Massachusetts Disabilities Council because for too long there has been a tendency by government to spend too much money on keeping people in out-of-home placements and not enough money to keep people in their own home. It is our intent to encourage agencies, to allocate monies so that families are able to keep a family member with disabilities at home. We are requesting that each EOFIHS agency that services persons with disabilities create an Individual and Family Support Program to provide consumer guidelines for agencies to use when developing family supports. We are asking the Department of Mental Retardation and the Department of Public Health to act as lead agencies in forming plans and support programs. (Give some facts) Currently in the Department of Mental Retardation approximately fifty percent of all its resources go toward serving five percent of the population due to the Department's priority of funding people in large institutions. (Give a specific example) My family requested that the Department of Mental Retardation provide someone to drive my daughter to a dance on Friday nights because I am no longer able to drive. We were, happy to keep her at home, but she needed more opportunities to see her friends. However, the only choice we had was nothing or to put her on a waiting list for a group home. The driver would have cost at most $750.00 per year. The group home they wanted to put her in cost $45,000 per year per person. There has to be a better way to provide care. It should not be all or nothing. (Give conclusion) We are asking for more consumer involvement in the way decisions are made. Good supports are essential for people with ~disabilities or- chronic illnesses to live in their own homes comfortably or keep a family together, but government has not made this a priority. This bill is not asking for any additional money, we are asking for a shift in the way decisions are made and priorities are chosen. Finally, I support H2902 and ask you to give this bill an Ought to Pass. Thank you for giving me the opportunity to testify before you today. If I can provide any further information, I have attached my name and phone number. Sincerely, Your Signature Name Address City, State Zip Code (Area Code) Phone Number Your personal Stationary SAMPLE LETTER TO EDITOR DATE Editor Local Paper Name Address City, State Zip Code I am writing to urge your support of H2902, An Act to Support Citizens with Disabilities and Their Families. (Briefly explain the status of the bill) This bill is currently in the House Ways and Means Committee and I am urging the public to let the House members know they support bill. (Explain what this bill would do) This bill will coordinate existing resources in each Executive Office of Health and Human Resource Agency by creating an Individual and Family Support Program within each agency with its own budget line. The intent of this legislation is to shift priorities from an agency base to a home base so that consumers and families have more flexible supports, including respite care, personal care attendants, after school care and other such services that allow people with serious disabilities to live at home. People belong in their own communities. We need your support to assure that everyone has the opportunity to do so. Thank you. Sincerely, Your Signature Name Address City, State Zip Code (Area Code) Phone Number MDDC ADVOCACY TRAINING WORKSHOP PARTICIPANTS QUESTIONNAIRE & EVALUATION WE APPRECIATE YOUR TAKING A FEW MOMENTS TO FILL OUT THIS QUESTIONNAIRE AND EVALUATION SO THAT WE MAY LEARN FROM YOUR EXPERIENCE AND IMPROVE THE QUALITY OF FUTURE WORKSHOPS. THANK YOU FOR YOUR PARTICIPATION. NAME:_______________________________________________________________ ADDRESS:____________________________________________________________ CITY/TOWN:__________________________________________________________ PHONE: ___________________________________________ STATE REPRESENTATIVE:______________________________________________ SENATOR:____________________________________________________________ Are you a current member of a disability group? Yes_____ No_____ i.e., Independent Living Center, United Cerebral Palsy, Arc Please Identify:_________________________________________________________ How would you define yourself? (Check all that apply.) A Consumer of Services:_____ An Advocate:_____ A Parent:_____ A Friend:_____ Have you ever been to the State House? Yes_____ No_____ Have you ever met with your legislator? Yes_____ No_____ If Yes, please describe: Who, When, Where________________________________ ______________________________________________________________________________ ____________________________________________________________ Have you ever participated in passing a bill or budget issue? Yes_____ No_____ Have you ever written a letter to a politician? Yes_____ No_____ Have you ever worked on a political campaign? Yes_____ No_____ Overall, I found this training session: (check one) Exceeded my expectations_____ Met my expectations_____ Disappointing_____ The information presented was: (choose one from each column) Too specific_____ Too advanced_____ Adequately covered_____ Just right_____ Too general_____ Too elementary_____ Was the length of the training adequate? Too long_____ Adequate length_____ Not long enough_____ The most useful element of the training session was: (please be specific) The least useful element of the workshop was: (please be specific) Please give suggestions on what might be included in future sessions. Section 5 Other Resources Systems Advocacy: Using Your Power to Effect Change Brainstorming Stakeholders Template #1 Coalitions have more power when they include groups representing diverse needs as well as groups that traditionally do not join forces. Issue:_____________________________________________________ Identify stakeholders that may be potential partners. Person or Group Reason for Partnership ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ ________________________ ______________________________ Systems Advocacy: Using Your Power to Effect Change Articulating Values and Guiding Principles Template #2 In any policy campaign, hundreds of decisions are made. They range from when to use a tactic or when to compromise your position. Value As a coalition, develop a list of words with a meaning that encompasses the reason your coalition exists. _____________________________ ______________________________ _____________________________ ______________________________ _____________________________ ______________________________ _____________________________ ______________________________ _____________________________ ______________________________ Prioritize and group the words above. _____________________________ _____________________________ _____________________________ _____________________________ _____________________________ _____________________________ _____________________________ _____________________________ _____________________________ _____________________________ Guiding Principles Determine your guiding principles by setting the philosophical boundaries for your coalition. Do this by turning your words of value into statements. EXAMPLE Value: Community Guiding Principle: All people deserve the opportunity to reside in their communities. Value________________________________________________________________ Guiding Principle_______________________________________________________ Value________________________________________________________________ Guiding Principle_______________________________________________________ Value________________________________________________________________ Guiding Principle_______________________________________________________ Systems Advocacy: Using Your Power to Effect Change Developing a Strategic/Action Plan Template #3 An effective strategic plan includes the following components. As you address these questions a plan will emerge that will lead to the accomplishment of the goals that brought you together as a coalition. Issue: __________________________________________________________ What do you stand for? Describe the coalition's values or guiding principles (Template 2). _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ Complete a reality check. List the following: Strengths______________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ __________________________________________ Weaknesses____________________________________________________________________ ______________________________________________________________________________ ___________________________________________________ Opportunities___________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ __________________________________________ Keep your eye on the prize. What do you want to achieve? Goals and Objectives___________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ________________________ What are the steps necessary to achieve your goals and objectives? This is the action part of the plan. Use the analysis you have completed on the above questions and outline your strategy. Ensure that all activities lead to the desired outcome. _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ In all coalition efforts there must be a process established to assess the progress of the group. This allows the strategy to be revisited often. Identify the method(s) you will use to monitor progress: ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ _________________________________________________________________________ Systems Advocacy : Using Your Power to Effect Change Strategies for Interacting with Policy Makers Template #4 Below are the major factors that affect the decisions elected officials and their staff make in the course of fulfilling their policy making responsibilities. Issue: _____________________________________________________________________ Merit/content of the proposal. Lay out the proposal by listing the key issues and rationale. ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______ Framing the Issue. Without deviating from your guiding principles, develop the message your coalition will use to elicit a positive response. ______________________________________________________________________________ ______________________________________________________________________________ ___________________________________________________ Timing of the Proposal. Determine a timeline to maximize your message. Work from the action plan developed in Template 3. Activity Timeline ________________________________ __________________________________ ________________________________ __________________________________ ________________________________ __________________________________ ________________________________ __________________________________ ________________________________ __________________________________ Reality Check. Indicate the realities in the following areas that will need to be addressed. Political Realities: ______________________________________________________________________________ ______________________________________________________________________________ ___________________________________________________ Logistical Realities: ______________________________________________________________________________ ______________________________________________________________________________ ___________________________________________________ The Form of the Message. In order to maximize the time of elected officials and their staff you must determine how you will present your information. Determine which materials you will use, who will develop them and the format to be used. ______________________________________________________________________________ ______________________________________________________________________________ ___________________________________________________ Who will deliver the message? The person delivering the message often whether or not it is heard and acted on in a favorable manner. Who will deliver your message?_____________________________________________________________ ______________________________________________________________________________ ____________________________________________________________ Why? _____________________________________________________________________ ______________________________________________________________________________ ____________________________________________________________ Systems Advocacy: Using Your Power to Effect Change Planning a Public Forum Template #5 What is the goal of the forum? ______________________________________________________________________________ ______________________________________________________________________________ ___________________________________________________ What is the message? _____________________________________________________________________ ______________________________________________________________________________ ____________________________________________________________ Who is invited (panel)? _____________________________________________________________________ ______________________________________________________________________________ ____________________________________________________________ Who are the speakers and why? Speakers Reason ____________________________ __________________________ ____________________________ __________________________ ____________________________ __________________________ ____________________________ __________________________ ____________________________ __________________________ Who is the audience? _____________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ __________________________________________ List logistical information. Name of event_____________________________________________ Date____________________________________________________ Location__________________________________________________ Address__________________________________________________ Time_____________________________________________________ Coordinated by_____________________________________________ INTERNET LINKS TO GOVERNMENT AND OTHER USEFUL SITES Federal Legislative Information Thomas : Library of Congress' Website www.thomas.loc.gov United States Senate www.senate.gov United States House of Representatives www.house.gov The White House www.whitehouse.gov Cabinet Agencies www.whitehouse.gov/WH/Cabinet/html/cabinet_links Federal Independent Agencies and Commissions www.whitehouse.gov/WH/Independent_Agencies/html/ independent_links Government Accounting Office www.gao.gov U.S. Code of Federal Regulations www.access.gpo.gov/nara/cfr/cfr-table-search Federal Register www.access.gpo.gov/su_docs/aces/aces140 OSERS - Office of Special Education and Rehabilitative Services - U.S. Department of Education www.ed.gov/offices/OSERS Rehabilitation Services Administration http://www.ed.gov/offices/OSERS/RSA/rsa Internet Resource Information Congress.org Congressional Directory with biographical information and a search engine to find your Members of Congress by zip-code http://congress.org/main Congressional Quarterly's AMERICAN VOTER Check up on your members of Congress and compare your positions on key issues. www.cq.com Congressional Quarterly's VOTE WATCH provides timely news stories on key congressional votes and a searchable database of members' individual votes. http://cnn.com/ALLPOLITICS/cq/resources/votewatch Governors Offices and Phone Numbers http://www.nga.org/Governor/GovernorsAddress.htm State and Local Government Links http://www.piperinfo.com/state/states.html Empowerment Zone- Great Disability and General Public Policy Information www.empowermentzone.com Media Links http://www.policy.com/community/media.html Political Dictionary http://www.fast-times.com/political.html IL NET: Systems Advocacy: Using Your Power to Effect Change Page vi IL NET: Systems Advocacy: Using Your Power to Effect Change Page vii IL NET: Systems Advocacy: Using Your Power to Effect Change Page 2 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 3 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 56 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 60 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 61 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 64 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 65 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 66 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 69 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 70 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 67 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 68 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 71 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 70 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 71 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 72 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 71 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 86 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 87 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 90 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 91 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 114 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 113 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 126 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 119 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 121 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 123 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 127 IL NET: Systems Advocacy: Using Your Power to Effect Change Page 142 A Parent: A Friend: _________ IL NET: Systems Advocacy: Using Your Power to Effect Change Page 143