How to Be Your Own Advocate 2013 Ask Us How! Individual & Systems Advocacy VOICE/TTY 417.886.1188 800-676-7245 | www.swcil.org Main Office: 2864 S. Nettleton Ave., Springfield, MO 65807 Branson Branch: 610 S. 6th St., Suite 210, Branson, MO 65616 SCIL is a non-profit 501(c)(3) organization. All proceeds benefit persons with disabilities. How to Be Your Own Advocate Table of Contents Section........................................................................Page About Us..............................................................................2 What Is Advocacy................................................................4 Can You Really Make A Difference?...................................5 The Five Steps of Advocacy................................................6 The Nuts and Bolts of Doing Advocacy............................13 Preparing for Advocacy.....................................................15 Advocating by Letter..........................................................16 Area Newspaper Contact Information.............................20 Advocating by Telephone..................................................24 Face to Face Conversations.............................................25 Getting Help When You Need It........................................27 Educational Tools..............................................................29 Student Lead IEP Worksheet............................................39 Resources for Getting Help...............................................41 Legislative Organizing Opportunities Projects (LOOP)....43 Disability Coalition for Healthcare Reform (DCHR)........ 44 Working with Elected Officials..........................................46 IL Workshop Series...........................................................50 Legislative Resources.......................................................51 State of Missouri Elected Officials...................................52 Federal Officials Elected Officials................................... 64 Voter Registration Information.........................................67 2013 Advocacy Book | Page 1 2011 About Us The Southwest Center for Independent Living (SCIL) offers choices and empowerment for people with disabilities to live independently in the community in the least restrictive environment. By providing home and community based supports that allow persons with disabilities to choose how and where they live, we believe the community will become more diverse while improving the quality of life of our consumers. SCIL serves all persons with disabilities regardless of sex, age, race, income or disability type. According to the Americans with Disabilities Act (ADA) a disability is defined as a physical or mental impairment that substantially limits one or more major life activities. A disability can be physical, mental, emotional, cognitive or sensory as well as permanent or temporary. Founded in 1985, SCIL is a private, non-profit organization with a majority of staff and governing board with disabilities offering services in these southwest Missouri counties: Christian, Dallas, Greene, Lawrence, Polk, Stone, Taney and Webster. Our main office in Springfield and Branson branch serve a population base of 546,712 people and in the SCIL service area, approximately 14.7% or approximately 81,000 people are estimated to have at least one disability. (US Census & American Community Survey 2008-2011 Estimates) The third largest city in the state, Springfield is the urban medial and shopping hub for the mainly rural southwest Missouri area and these differences make our efforts unique and challenging due to the wide range of needs for access to adequate housing, transportation, technology, health & wellness and employment. Page 2 | 2013 Advocacy Book About Us We work to achieve positive change in the community, state or nation for today and tomorrow through four core services: 1. Systems and Individual Advocacy 2. Information & Referral 3. Peer Support 4. Independent Living Skills Training Programs available to all people with disabilities include: ►► Assisting Consumers Through Technology (ACTT) ►► Community Access ►► Education & Outreach ►► Mental Health Counseling ►► Renovation And Modifications ProjectS (RAMPS) ►► Support & Recreation Groups ►► Transition Services & De-Institutionalization ►► Volunteer Opportunities ►► Voter Registration ►► Youth Services SCIL offers two state approved Personal Care programs which allow people with physical disabilities to obtain assistance with personal care and daily living, while maintaining independence in their own homes through Medicaid, Private Pay or Veterans Benefits. ►► Consumer Directed Services (CDS) ►► In Home Services Please contact us for more information: ►► 417.886.1188 or www.swcil.org 2013 Advocacy Book | Page 3 What Is Advocacy? Advocacy means: ►► Standing up for your own rights ►► Speaking for oneself ►► Fighting against personal discrimination To be an effective advocate you need to know: 1. Your rights as a person with a disability 2. Who to contact when you must advocate for yourself 3. How to make phone calls on your own behalf or write a self-advocacy letter 4. How to have a face-to-face talk when you advocate Page 4 | 2013 Advocacy Book Can You Really Make A Difference? YES, YES, YES!! When legislators are asked who affects their decisions, they answer, “The ordinary citizen.” If you are dealing with a store owner, you are a potential customer, whose business they may lose. When “ordinary citizens” speak up, people listen. THE FIVE STEPS OF ADVOCACY 1. Feel a strong need for change. 2. Identify the real need or problem. 3. Educate yourself on the best way to handle the need or problem. 4. Develop a plan of action. 5. Be willing to take action once you have decided on the plan, and follow through. 2013 Advocacy Book | Page 5 The Five Steps of Advocacy Step One YOU MUST FEEL A STRONG NEED FOR CHANGE! Doing advocacy requires a lot of hard work. You need to feel strongly about a need or problem if you are going to get involved in the advocacy process. Sometimes things can be changed rather easily, or the process may take a long time. Be prepared to stick with it and see it through! The following are some characteristics you need to have to be successful as an advocate: Page 6 | 2013 Advocacy Book The Five Steps of Advocacy Step One ►► You must be committed - advocacy takes a lot of time and energy. ►► You must be persistent - be willing to try more than once. ►► You must be flexible - accept that change isn’t always going to happen the expected way. ►► You must be creative - believe that there is usually another angle to pursue. ►► You must be ethical - don’t lose the battle because you got your facts wrong or misrepresented something. ►► You must be willing to express appreciation thank those who have helped you or made a change because you asked. 2013 Advocacy Book | Page 7 The Five Steps of Advocacy Step Two IDENTIFY THE REAL NEED OR PROBLEM! Often it is easier to see the symptoms of problems than it is to see the cause of the problems. It saves time in the long run if you take some time to really understand why the problem exists. A. Gather information about the need or problem to determine if it is something that: ►► Really needs to be addressed and when. ►► Can be changed, or is something to be coped with. ►► You really want to commit yourself to trying to change. B. Determine the cause of the need or problem. ►► Is it due to existing resources not meeting needs? ►► Is it due to lack of resources to address needs? ►► Is it due to no foreseeable way to address needs? Page 8 | 2013 Advocacy Book The Five Steps of Advocacy Step Two C. Determine how big the problem is. First, determine if it can be addressed. If so, then will it be necessary to: ►► Use individual advocacy for change within an existing resource system? ►► Use group advocacy for change within an existing resource system? ►► Use individual advocacy for development of resources? ►► Use group advocacy for development of resources? Clearly define the need or problem to be addressed based on the above information and write it down in a clear, complete statement. 2013 Advocacy Book | Page 9 The Five Steps of Advocacy Step Three EDUCATE YOURSELF ON THE BEST WAY TO HANDLE THE STATED NEED OR PROBLEM! Develop an understanding of the system, organization or business you will need to influence or work with. A. Become familiar with how the system, organization or business works. ►► Determine whether the problem has the potential to be changed. ►► Locate where the problem begins and exists within the structure. ►► Find out who has the power to make the change. B. Become familiar with the boundaries that people have to work within. For instance: ►► Legal Boundaries: the laws, rules and regulations that govern the operation of the organization or business. ►► Limited resources: the amount of money, staff, time, etc. available to provide a service. Page 10 | 2013 Advocacy Book The Five Steps of Advocacy Step Four DEVELOP A PLAN OF ACTION TO TACKLE THE NEED OR PROBLEM. ►► Brainstorm for different ways to try to solve the problem. ►► Consult with others for information, advice, technical assistance or support. ►► Consider how long each kind of action might take to do, as well as how much it might cost you. ►► Decide what you will do and according to what time frame. ►► Anticipate what kinds of resistance you may get and try to be prepared for them. ►► Draft your action plan for what, where, when and how you will do your advocacy. 2013 Advocacy Book | Page 11 The Five Steps of Advocacy Step Five BE WILLING TO TAKE ACTION ONCE YOU HAVE DECIDED ON A PLAN. A. Taking action requires being persistent and in control of yourself. B. Taking action requires communicating and developing relationships with others who can assist you in your cause. C. Taking action may require “playing hard ball” when necessary. ►► File a formal grievance ►► Initiate a due process hearing ►► Write a letter to responsible agencies ►► Bring political pressure on legislators ►► Contact advocacy groups ►► Contact the news media to get publicity ►► Take it to court Page 12 | 2013 Advocacy Book The Nuts And Bolts of Doing Advocacy Careful planning and organization are very important! There are practical things you can do that will help you be a good advocate: HAVE A “VERY IMPORTANT PAPERS” FILE: Start a loose-leaf notebook or other way of keeping important papers all in one place. You will be surprised at how much material and documentation you may accumulate when preparing to advocate. This notebook may contain medical evaluations, rehabilitation plans, Individualized Education Plans, financial information and any other information that will affect your argument. If in doubt about whether to keep a paper or documentation, keep it. Also keep copies of all letters, reports, and communications both to and from the person or agency with whom you are corresponding. 2013 Advocacy Book | Page 13 The Nuts And Bolts of Doing Advocacy OBTAINING RECORDS: Depending on what particular agency you are dealing with, methods and timelines for obtaining records may vary greatly. Having current and complete records will help your case. Learn the agency’s rules for obtaining records and then ask for the specific ones you want. Also ask for copies of policies that have to do with your situation. If you are denied access to records, demand a full explanation for what is left out and why. Page 14 | 2013 Advocacy Book Preparing for Advocacy It is often helpful to sit down and organize your thoughts, papers and plan so you are more effectively prepared. Write a brief outline of what you want to say or prove. Write down the steps you are going to take to make your point. List the subjects you want to cover and the materials you may have that would help you make your case. It may be useful to make copies of papers that you want to share with the people where you are doing advocacy. BE SURE TO KEEP A COPY OF ANYTHING YOU SEND TO SOMEONE ELSE. In addition, if someone sends you a document that you do not fully understand, do not hesitate to ask for an explanation. After a telephone conversation, send a letter to that person which summarizes your conversation. Ask if that person agrees that this is what was said. 2013 Advocacy Book | Page 15 Advocating by Letter The main thing to remember when writing a letter is to BE BRIEF (one page) and TO THE POINT. If you want the person to read additional material supporting your view, attach this to your brief letter. Use your own words and state your problem as clearly as possible. Don’t get sidetracked and put in information that is not relevant to the situation. Page 16 | 2013 Advocacy Book Advocating by Letter The following information should be in your letter: ►► Identify who you are (i.e. parent of a child with a disability, tax payer, adult with a disability, etc.) ►► Be definite and direct (i.e. We want…., I urge you to…, We want support for…, We oppose…, etc.) ►► Identify the issue and any rule, regulation, law, etc. that has to do with it. ►► State briefly why you are taking the position you are taking. Explain how the issue affects you, your family, the people you work with, etc. ►► Type or write your letter so it can be easily read. ►► Sign your name and give your address and telephone number. You may also want to request a response from the person with a deadline, if this is appropriate. ►► Keep a copy of your letter for your files. 2013 Advocacy Book | Page 17 Advocating by Letter How do I write a Letter to the Editor (LTE)? Courtesy of Missouri Progressive Vote Coalition ►► Be brief. There is a lot of competition for a small amount of space. A general rule of thumb is to keep your letter to 200 words or less. ►► Respond quickly. Newspapers only print LTE’s that immediately respond to an issue. ►► Include your home and work phone number along with your address at the end of the LTE. Many papers won’t print letters unless they can call the author to verify that he or she wrote it. ►► A catchy first line is helpful. Instead of “I’m writing to respond to the SNL editorial of August 3rd…” try “The August 3rd editorial left me wondering if SNL editorial writers live in the real world.” Page 18 | 2013 Advocacy Book Advocating by Letter ►► Remember your audience. In most cases you’re trying to sway the public, not your adversary. Therefore, you should try to seem moderate and fair. This doesn’t mean you should be bland. But have the average person in mind, and use phrases and arguments that resonate with them. ►► Use statistics sparingly. They can get confusing and overwhelming very quickly. ►► Refer to an article already printed by the paper. This increases the chance that your letter will be run. ►► Use short punchy sentences. This makes it easier for the reader to follow your thinking and easier for the editor to cut your letter if necessary (and better to have an edited version of your letter printed than none at all). ►► Follow up with a phone call. Make sure the appropriate person got your letter. 2013 Advocacy Book | Page 19 Area Newspaper Contact Information Springfield News Leader Websitehttp://www.news-leader.com/ http://getpublished.news-leader.com/ Forms/LettersToEditor.php E-mailletters@newsleader.com Address 651 Boonville, Springfield MO 65806 Phone 417-836-1100 or 1-800-695-1969 Fax417-837-1381 Ash Grove Commonwealth Times E-mailagcommonwealth@sbcglobal.net Address 102 E Jackson, Ash Grove, MO 65604 Phone417-343-5517 Aurora Advertiser Websitewww.auroraadvertiser.net E-mailaaeditor@centurytel.net Address 226 West Church St (P.O. Box 509) Aurora, MO 65605 Phone417-678-2115 Bolivar Herald-Free Press Websitewww.bolivarmonews.com E-mailbhfp@bolivarmonews.com Address 335 S Springfield Ave., P.O. Box 330 Bolivar, MO 65613 Phone417-326-7636 Page 20 | 2013 Advocacy Book Area Newspaper Contact Information Branson Daily News Websitehttp://bransontrilakesnews.com/ E-mailinternet@bransondailynews.com Address P.O. Box 900, Branson, MO 65615 Phone 417-334-3161 Fax417-334-4299 Christian County Headliner Websitehttp://ccheadliner.com/ Address 116 N 2nd Ave, P.O. Box 490 Ozark, MO 65721 Phone417-581-3541 Fax417-581-3577 Community Free Press Websitewww.cfpmidweek.com E-mailletters@cfpmidweek.com Address P.O. Box 2418, Springfield, MO 65801 Phone417-447-2130 Fax417-447-2140 Joplin Globe Websitewww.joplinglobe.com/ E-mailletters@joplinglobe.com Address 117 E Fourth Street, Joplin, MO 64801 Phone417-623-3480 Fax417-623-8598 2013 Advocacy Book | Page 21 Area Newspaper Contact Information Lawrence County Record Websitehttp://www.lawrencecountyrecord.com/ E-maillcrecord@centurytel.net Address P.O. Box 348 Mt. Vernon, MO 65712 Phone417-468-2185 Lebanon Daily Record Websitewww.lebanondailyrecord.com E-maileditor@lebanondailyrecord.com Address 100 E Commercial Lebanon MO 65536 Phone417-532-9131 Marshfield Mail Website www.marshfieldmail.com E-mail news@marshfieldmail.com Address 225 N Clay St. P.O. Box A Marshfield, MO 65714 Phone417-468-2013 Fax417-859-7930 Neosho Daily News Websitewww.neoshodailynews.com E-maileditor@neoshodailynews.com Address 1006 W. Harmony Neosho, MO 64850 Phone417-451-1520 Fax417-451-6408 Page 22 | 2013 Advocacy Book Area Newspaper Contact Information NixaXPress Websitewww.nixaxpress.com/ E-mailnews@nixaxpress.com Address 605 E Kathryn P.O. Box 594, Nixa, MO 65714 Phone417-725-3745 Fax417-725-3683 Republic Monitor Websitewww.republic-monitor.com Address 249 Highway 60 West Republic, MO 65738 Phone417-732-2525 Fax417-732-2980 West Plains Daily Quill Websitehttp://home.centurytel.net/ westplainsdailyquill/ E-mailwpqnews@centurytel.net Address P.O. Box 110 West Plains, MO 65775 Phone417-256-9191 2013 Advocacy Book | Page 23 Advocating by Telephone When calling: ►► Identify yourself by name, city and issue or situation (“I am John Doe, from Springfield, and I am calling about the inaccessible restroom in your store.”) ►► Try to establish a good rapport with the person. Ask for the person’s name for future reference. Be friendly, with the assumption that they want to “make it right” until you find out otherwise. ►► Briefly state your position and the action you would like the person to take. Explain in as much detail as necessary why you are taking the position you are and the action you are taking. Follow up the call with a letter confirming what was said in the conversation. ►► If appropriate, ask that your opinion or concern be relayed to the person’s supervisor. ►► If appropriate, request a response. Page 24 | 2013 Advocacy Book Face to Face Conversations ►► If the situation is immediate (grocery carts are in the accessible parking space), ask to see the manager or person in charge. ►► If the situation cannot be immediately changed (steps into a store), call and set up an appointment with the person who has the power to make the change. ►► BE ON TIME for an appointment and BE PREPARED. Have your documentation, copies of laws, etc. with you to help support your position. Be sure to have copies of any of the material you might want to leave with the person. ►► Be calm and in control. This may seem difficult when you are angry about a situation, but you will not get the response you want if you go in with a belligerent, threatening attitude. You want to be assertive, not aggressive. 2013 Advocacy Book | Page 25 Face to Face Conversations An Assertive Person: ►► Makes eye contact ►► Uses “I” messages ►► Is clear, concise and persistent ►► Uses a “reasonable” tone of voice ►► Actively listens ►► Makes personal decisions ►► Is confident Page 26 | 2013 Advocacy Book Getting Help When You Need It! What fears do you have about doing your own advocacy? Perhaps these are a few of them: ►► Taking risks ►► Could lose benefits, job, housing, etc. ►► May not be “smart enough” to stand up for myself ►► Can’t think “fast on my feet” ►► Uncomfortable speaking to people in authority 2013 Advocacy Book | Page 27 Getting Help When You Need It! How Could You Overcome Some of These Fears? ►► Work with a partner or someone who has been there (peer supporter). ►► Contact an advocacy organization, like a Center for Independent Living or consumer group such as the National Association of the Deaf, National Federation of the Blind, etc. ►► Contact statewide advocacy organizations or programs such as Protection & Advocacy, Governor’s Council on Disability, or legal aid societies. ►► Practice what you want to say with someone else first. Ask them to be honest with you and critique how well you did. ►► Practice self-advocacy skills on a smaller issue first before jumping to a big issue. ►► Put everything into writing and ask someone else to read it and make comments on it. Page 28 | 2013 Advocacy Book Educational Tools Self Determination for Students Why is self-determination important? Life has more meaning for all of us if we can have control over our daily activities, be expected for our choices about how we think and feel, and be considered a contributing and valuable member of our community. What may initially be perceived as a negative behavior related to disability, can many times be the result of the frustration and anger of students with disabilities who feel they are not being heard. Without self-determination as a primary goal and focus of the transition planning process, youth with disabilities have a higher risk of falling victim to abuse, neglect, and discrimination. IDEA acknowledges the importance of selfdetermination through the 1997 amendment that requires students to be invited to their IEP meetings. When youth with disabilities exercise personal control 2013 Advocacy Book | Page 29 Educational Tools Self Determination for Students over their lives, they learn to take responsibility for their actions and experience the outcomes of their choices. What are some ways that teachers and parents can provide opportunities for youth with significant disabilities to develop self-determination skills? ►► It is important to understand that self-determination is not just a verbal response to choice. SelfDetermination is also an intrinsic need of human beings, an “innate natural propensity to engage in one’s interests and exercise one’s capacities and in so doing, to seek and conquer optimal challenges” (Deci & Ryan, 1985, p. 11). Never assume that the disability is too severe for communication to take place. Often it is lack of access to opportunities, not the disability, which prevents a person from being self-determined. ►► If an individual can benefit from an assistive Page 30 | 2013 Advocacy Book Educational Tools Self Determination for Students technology communication device, request an assessment and use the recommended technology for communication. However, even if an individual is not using a communication tool, his or her body language, facial expressions, and behaviors will provide messages of choice, satisfaction, and future needs. ►► At home and in school, part of the parents’ and teachers’ role can be to listen and observe the reactions and actions of persons with severe disabilities and begin compiling a history of expressed choices, wants, and needs. These can be incorporated into self-determination goals on the IEP with specific steps to achieve those goals. Does self-determination mean that a child or youth no longer relies on or receives support from parents, other caring adults, or friends who are involved in their lives? ►► No, self-determination requires ongoing support for all of us. Adults with or without a disability may continue to seek assistance and support from others, personally and professionally. SelfDetermination is not meant to be isolating. None of us are completely independent and it is healthy to 2013 Advocacy Book | Page 31 Educational Tools Self Determination for Students seek advice and information from others in order to make informed decisions and ensure that success can be achieved. ►► Youth will need mentors and caring adults in their lives who provide ongoing support for them to take risks, build resilience amidst failure, speak assertively, and to develop the internal selfdetermination characteristics and the external selfadvocacy communication skills needed for success. How does the development of self-determination skills support students’ capabilities as effective decision-makers during their Individual Education Plan (IEP) meetings? Youth are more likely to participate as effective decision-makers during their IEP meetings when they: ►► understand their disability ►► learn how that disability will affect their dreams of college, work, independent living, and relationships ►► build the confidence to communicate their dreams and needs Source: Deci, E. & Ryan, R. (1985). Intrinsic motivation and selfdetermination in human behavior. New York: Plenum. Page 32 | 2013 Advocacy Book Educational Tools IDEA The Individuals with Disabilities Education Act or IDEA’s provisions involve both common sense and courtesy, and are intended to ensure that parents have every opportunity to attend the meeting and contribute. In a nutshell, the school and parents have to agree when and where they are going to meet. ►► Parents must be notified of the meeting early enough to ensure they have an opportunity to attend. As the provisions in the box indicate, the public agency must tell parents the purpose, time and location of the meeting; who will be at the meeting; and that both the parents and public agencies have the right to invite other people with knowledge or special expertise about the child, including related services IDEA’s provisions involve both common sense and courtesy, and are intended to ensure that parents have every opportunity to attend the meeting and contribute. In a nutshell, the school and parents have to agree when and where they are going to meet. 2013 Advocacy Book | Page 33 Educational Tools IDEA ►► Parents must be notified of the meeting early enough to ensure they have an opportunity to attend. As the provisions in the box indicate, the public agency must tell parents the purpose, time and location of the meeting; who will be at the meeting; and that both the parents and public agencies have the right to invite other people with knowledge or special expertise about the child, including related services personnel as appropriate. (Additional clarification: The party inviting such an individual makes the determination that the individual possesses the requisite knowledge or special expertise regarding the child.) ►► In the case of a child who was previously served under Part C of IDEA (the early intervention system) and who is now transitioning to Part B services for school-aged children (including children ages 3-5), this notice must also let parents know that, if they request it, the Part C service coordinator or other representatives of the Part C system must be invited to attend the initial IEP meeting [in accordance with 300.321(f)]. Page 34 | 2013 Advocacy Book Educational Tools IDEA ►► Knowing each of these elements in advance of the meeting gives parents the opportunity to prepare and more fully participate in meeting discussions and decisions. ►► If parents need an interpreter, including a sign language interpreter, they should let the public agency know in advance of the meeting, so that the public agency has time to make suitable arrangements. Public agencies are required to take the necessary steps to give parents the opportunity to understand the proceedings at an IEP Team meeting [300.322(e)], but parents should not assume that such an arrangement will be made by the public agency. Parents who need an interpreter may wish to check with their school district to find out how much time is needed to arrange for an interpreter to be present at the IEP meeting. http://idea.ed.gov/ 2013 Advocacy Book | Page 35 Educational Tools Communication Tools Assertiveness IS: While you are working with the school team, there will also be times when you need to disagree or make an assertive statement. It is important to keep in mind that your message should be clear and direct but not aggressive or hostile. Avoid making overstatements and using words that indicate absolutes. Overstatements or exaggerations of your point will hasten a loss of credibility. Also avoid putting the other person on the defensive. Even the most hardened criminals will always fight to justify themselves when put on the defensive. Attack issues, not people. Assertiveness IS: 1. Knowing an understanding your rights; 2. Knowing and understanding your child’s rights; 3. Asking questions anytime you need clarification; 4. Repeating a question until it is satisfactorily answered; 5. Insisting that all persons who should be at an IEP meeting are there, including someone in authority; 6. Keeping a paper trail of all communication regarding your child’s education, sending copies to the appropriate people, and requesting copies and records from school; Page 36 | 2013 Advocacy Book Educational Tools Communication Tools 7. Monitoring to be sure that the IEP is being implemented and followed; 8. Knowing that your are a full partner in planning your child’s education program and expecting to be treated as such; 9. Letting people know that you intend to resolve issues and are willing to go to due process, if necessary; 10.Learning all you can about your child’s disability and needs; 11.Knowing about available resources an using them; 12.Finding out who the right person to talk to is, knowing who the key persons are, and trying all avenues; 13.Praising and thanking people when appropriate; 14.Never saying (thinking, feeling) “I’m just a parent”. 2013 Advocacy Book | Page 37 Educational Tools Communication Tools ASKING QUESTIONS ►► Describe for me… ►► Tell me more about… ►► Give me an example… ASSERTIVE STATEMENTS ►► I’m not sure I agree… and I want to talk about.. ►► I have a problem with… and would like to explore… ►► I feel strongly that ….and would like to brainstorm… ►► Let me tell you my reaction…I would like to focus on… I MESSAGES ►► I’m get upset when… ►► I’m angry about… ►► I’m concerned about… ►► I’m confused about… Page 38 | 2013 Advocacy Book PARAPHRASING ►► What I think you mean is… ►► I understand you to say… ►► Let me be sure I’m understanding you.. ►► So in other words… ►► What I hear you saying is… SOFTNERS ►► I’m curious about… ►► What would happen if… ►► It would help me if… ►► Can you tell me the reason for… SUPER QUESITONS ►► Compared to what? ►► Specifically what? ►► Specifically how? ►► Specifically why? Educational Tools Student Lead IEP Worksheet Place a check mark next to each activity you will assume responsibility for and fill in the blanks to help you prepare for your next IEP meeting. ______I will attend my next IEP meeting ______I will participate in the following ways: _________________ Introduce myself Hi my name is____________________________________________ I want to welcome and thank you all for coming to my IEP meeting. State the purpose of the meeting The purpose of this meeting is to:___________________________ _______________________________________________________ Introduce the other IEP members (or) ask the other IEP members to introduce themselves Would everyone please introduce themselves? Ask someone to take notes for my IEP Mr./Mrs._______________ would you please take notes for my IEP? Thank you. Ask IEP members to report on my academic progress and related services I would like an update on my progress this past year. Who would like to begin? Describe my disability, strengths and weaknesses, and how I think I did in school this past year As you all probably know, I am receiving special education and related services because I have been identified as having (describe your disability). __________________________________ Overall, I think I did ___________ in school this past year. My favorite subjects were:__________________________________ My least favorite subjects were: _____________________________ The vocational evaluation or career exploration activities I participated in were:______________________________________ Educational Tools Student Lead IEP Worksheet I needed the following accommodations/modifications:_________ _______________________________________________________ Assistive technology I used included:_________________________ _______________________________________________________ State my transition goals in the areas of employment/ postsecondary education, independent living, and community participation My employment/postsecondary education goals for next year are: _______________________________________________________ My independent living goals for next year are:_________________ _______________________________________________________ My community participation goals for next year are:____________ _______________________________________________________ Describe my educational program for the coming school year, including goals, objectives, and classroom modifications My educational goals for next year are:_______________________ _______________________________________________________ State my concerns/needs and ask IEP members for input I am most concerned about:________________________________ _______________________________________________________ I believe I will need the following related services and accommodations / modifications / assistive technology to be successful: ______________________________________________ Does anyone have any suggestions to help me meet my goals? Thank everyone for coming Thank you all for coming and participating in my IEP. I will not attend my next IEP meeting, but will make sure my interests, preferences, and needs are taken into consideration by the Planning and Placement Team when they develop my Individual Education Program. I will do this by completing the following activities:________________________________________ _______________________________________________________ _______________________________________________________ Resources for Getting Help Missouri Centers for Independent Living (CILS) Websitehttp://www.mosilc.org/ Phone1-888-667-2117 Governors Council on Disability Websitehttp://www.disabilityinfo.mo.gov/ Phone 1-800-877-8249 (Voice/TTY) 573-751-2600 (Voice/TTY) Fax573-526-4109 Missouri Protection and Advocacy Websitehttp://www.moadvocacy.org/ Phone 573-659-0678 Application Unit 800-392-8667 Fax 573-659-0677 Missouri Commission for the Deaf and Hard of Hearing Websitewww.mcdhh.mo.gov/ Phone 573-526-5205 (Voice/TTY) Websitehttp://www.missouricounciloftheblind.org/ Phone800-342-5632 Missouri Council of the Blind LEGAL SERVICES of Southern Missouri Websitehttp://www.lsosm.org Phone417-881-1397 800-444-4863 US Census information Websitehttp://www.census.gov/ 2013 Advocacy Book | Page 41 Resources for Getting Help US Housing and Urban Development Website http://portal.hud.gov /hudportal/HUD Websitehttp://www.dredf.org/ Website http://www.paraquad.org/issues-adv ocacy /legislativ e-updates Disability Rights and Education Defense Fund Paraquad Action Alert & Missouri Advocates with Disabilities Empowerment Network LOOP (Legislative Organizing Opportunities Project) Website http://swcil.org/pages/v iew/loop Websitehttp://sos.mo.gov/elections/ govoteMissouri/ Vote Missouri National Dissemination Center for Children with Disabilities Websitehttp://www.nichcy.org Websitehttp://www.wrightslaw.com Websitehttp://ptimpact.org Websitehttp://httpwww. southwestmissouriautismnetwork.org// Wrights Law Missouri Parents Act Southwest Missouri Autism Network Autism Speaks Websitehttp://www.autismspeaks.org/ Page 42 | 2013 Advocacy Book L P Legislative Organizing Opportunities Project We Need You! Please Join Us! Come and learn how to make a difference! ►► LOOP is a group of self-advocate people with disabilities that meet monthly to learn about public policy relating to people with disabilities and how to make an impact at the local, state and federal levels. ►► We follow legislation, take action and brainstorm on how to break down the barriers that exist for people with disabilities. ►► We invite and get to know our elected officials during our meetings. LOOP ►► Second Friday each month ►► 11:00 am - 1:30 pm ►► Meet at SCIL Main Office ►► Limited transportation available. Please reserve your spot or if you have questions, please contact Shelby or Stacy B. at 417.886.1188 2013 Advocacy Book | Page 43 The Disability Coalition for Healthcare Reform What is DCHR? The Disability Coalition for Healthcare Reform (DCHR) is comprised of individual advocates and disability organizations who share a common mission to: Proactively improve and assure access to quality health care for Missourians with disabilities. Access to comprehensive healthcare is crucial to the independence, dignity, and equality of all people including people with disabilities. Through the power of a unified, sustained coalition, the disability community will impact health care and long term care by: ►► Educating advocates and the community about healthcare issues ►► Strengthening advocacy networks ►► Tracking legislation ►► Impacting policy decisions ►► Developing policy recommendations Page 44 | 2013 Advocacy Book The Disability Coalition for Healthcare Reform Membership DCHR is a statewide, cross-disability coalition whose members are disability-related organizations, selfadvocates and family member advocates. Join Today! Take Action! See Change! For additional information, please contact: Membership Paraquad, Inc. or Coalition C/O Megan Burke 5240 Oakland Ave St. Louis MO 63110 Websitewww.missouridchr.org Emailmburke@paraquad.org Phone 314-289-4200 or 4277 TTY314-289-4252 Fax314-289-4201 Funding for this project was provided by the Missouri Foundation for Health. A Project of Paraquad, Inc. 2013 Advocacy Book | Page 45 Working with Elected Officials Writing your legislator: ►► Be confident. You can be certain your letter will be read by the legislator or a staff member. Your letter will almost always be answered. ►► Be brief. Boil your argument down to one page or less. If it’s any longer, your letter loses effectiveness. Attach any detailed information you have to this letter. ►► Personalize your letter. Tell your own story in your own words. Avoid using postcards and form letters. ►► Have the facts. Refer to a bill by its title and number. ►► Focus on one issue. Your letter will be more effective if you only speak to one issue. ►► Be direct. Tell the legislator what action you want taken, like co-sponsor a bill or vote for the bill in committee. If possible, get a commitment to do what you ask. Page 46 | 2013 Advocacy Book Working with Elected Officials ►► Be civil. Don’t threaten, insult, wisecrack or name call. ►► Do not overdo it. Don’t write too often or overstate your case. Keep letters timely. ►► Compliment. Always praise the legislator if he or she votes the way you want. ►► Follow up. A note of thanks is a good idea and will make a good impression. 2013 Advocacy Book | Page 47 Working with Elected Officials Calling your legislator: A. Prepare for your call. ►► Know the facts, including the bill number,title and status. Think what you want to say first, and make notes if necessary so you won’t forget the points you want to make. Think through what kinds of questions you may be asked and be prepared to answer them. B. While on the phone. ►► You will probably speak to a staff member who handles the issue instead of the Member of Congress. ►► Focus on the issue you want to discuss. ►► Present your views politely, but persuasively. ►► State your views clearly. Page 48 | 2013 Advocacy Book Working with Elected Officials ►► Find out exactly where the legislator stands on the issue. ►► Ask what action he or she intends to take. ►► Listen carefully and write notes after the call. ►► Answer questions clearly. If you don’t know the answer, admit it and send the answer later. ►► Make sure you give the individual with whom you speak your name, address and phone number. C. Follow up. ►► Send a letter confirming your conversation and summarizing your views. Include any new information that supports your views or responds to questions raised during your phone call. 2013 Advocacy Book | Page 49 IL Workshop Series Page 50 | 2013 Advocacy Book Legislative Resources The information on the following pages was taken from several websites. The information pertains directly to SCIL’s service area: Greene, Polk, Stone, Taney, Christian, Lawrence, Dallas and Webster Counties. For more information on all state, federal and local government and elected officials, go to the following websites: United States of America President and Cabinet Websitehttp://www.whitehouse.gov/ Missouri House of Representatives Websitehttp://www.house.mo.gov/ Missouri Senate Website http://www.senate.mo.gov/ US House of Representatives Websitehttp://www.house.gov/ US Senate Website http://www.senate.gov/ State of Missouri Websitehttp://www.mo.gov/ 2013 Advocacy Book | Page 51 Legislative Resources State of Missouri Governor Jeremiah (Jay) Nixon / Democratic Websitehttp://governor.mo.gov Address P.O. Box 720, Jefferson City, MO 65102 Phone573-751-3222 Lt. Governor Peter Kinder / Republican Websitehttp://www.ltgov.mo.gov Address State Capitol Building, Room 224, Jefferson City MO 65101 Phone573-751-4727 Fax573-751-9422 Page 52 | 2013 Advocacy Book Legislative Resources State of Missouri Secretary of State Jason Kander / Democratic Websitehttp://www.sos.mo.gov Address State Capitol, Room 208 State Information Center, 600 W Main Jefferson City, MO 65101 Phone 573-751-4936 [SOS Information] State Treasurer Clint Zweifel / Democratic Websitehttp://www.treasurer.mo.gov Address P.O. Box 210 Jefferson City, MO 65102 Phone573-751-8533 2013 Advocacy Book | Page 53 Legislative Resources State of Missouri Attorney General Chris Koster / Democratic Websitehttp://ago.mo.gov/ Address Supreme Court Building 207 W. High St. P.O. Box 899 Jefferson City, MO 65102 Phone573-751-3321 Fax573-751-0774 Missouri Attorney General’s Office Address Springfield State Office Building 149 Park Central Square, Suite 1017 Springfield, MO 65806 Phone417-895-6567 Fax417-895-6382 Page 54 | 2013 Advocacy Book Legislative Resources State of Missouri State Representatives Websitehttp://www.house.mo.gov/ District 128 - Polk Co. / 2010 Representative Sue Entlicher / Republican Email Sue.Entlicher@house.mo.gov Address 201 W Capitol Ave, Room 405A Jefferson City, MO 65101 Phone573-751-1347 Legislative Asst. Vanessa Fisher Committees: Elections-Chairman, Agriculture Policy District 129 - Dallas Co. / 2010 Representative Sandy Crawford / Republican EmailSandy.Crawford@house.mo.gov Address 201 W Capitol Ave, Room 302-1 Jefferson City, MO 65101 Phone573-751-1167 Legislative Asst. Pam Bowman Committees: Majority Whip, Ethics, Agriculture Policy, Financial Institutions District 130 - Greene Co. / 2012 Representative Jeffrey Messenger / Republican EmailJeff.Messenger@house.mo.gov Address 201 W Capitol Ave, Room 410A Jefferson City, MO 65101 Phone573-751-2381 Legislative Asst. Peggy Talken Committees: Budget, Ways & Means, Fiscal Review, Economic Development 2013 Advocacy Book | Page 55 Legislative Resources State of Missouri District 131 - Greene Co. / 2012 Representative Sonya Anderson / Republican EmailSonya.Anderson@house.mo.gov Address 201 W Capitol Ave, Room 135AA Jefferson City, MO 65101 Phone573-751-2948 Legislative Asst. Scott Pearson Committees: Local Government, Professional Registration & Licensing District 132 - Greene Co. / 2006 Representative Charlie Norr / Democrat EmailCharlie.Norr@house.mo.gov Address 201 W Capitol Ave, Room 105D Jefferson City, MO 65101 Phone573-751-3795 Legislative Asst. Keri Wolters Committees: Retirement, Utilities, Appropriations-Agricultural and Natural Resources, Tourism and Natural Resources District 133 - Greene Co. / 2008 Representative Eric Burlison / Republican EmailEric.Burlison@house.mo.gov Address 201 W Capitol Ave, Room 313-3 Jefferson City, MO 65101 Phone573-751-3795 Legislative Asst. Jeremy Cady Committees: Budget, Elementary & Secondary Education, Professional Registration & Licensing-Chairman, Health Insurance Legislative Page 56 | 2013 Advocacy Book Resources State of Missouri District 134 - Greene Co. / 2012 Representative Elijah Haahr / Republican EmailElijah.Haahr@house.mo.gov Address 201 West Capitol Avenue, Room 409B Jefferson City MO 65101 Phone573-751-2210 Legislative Asst. Marietta Rutledge Committees: Workforce Development & Workplace Safety, AppropriationsTransportation & Economic Development, Judiciary District 135 - Greene Co. / 2010 Representative Lincoln Hough / Republican E-mailLincoln.Hough@house.mo.gov Address 201 W Capitol Ave, Room 411B Jefferson City, MO 65101 Phone573-751-9809 Legislative Asst. Marietta Rutledge Committees: Budget, Retirement, Appropriations-Agriculture & Natural Resources-Vice Chairman, Transportation-Vice Chairman District 136 - Greene Co. / 2012 Representative Kevin Austin / Republican E-mailKevin.Austin@house.mo.gov Address 201 W Capitol Ave, Room 135AC Jefferson City, MO 65101 Phone573-751-0232 Legislative Asst. Scott Pearson Committees: Local Government, Appropriations-Gen Administration, Economic Development, Small Business 2013 Advocacy Book | Page 57 Legislative Resources State of Missouri District 137 - Greene & Webster Cos. / 2010 Representative Lyndall Fraker / Republican E-mailLyndall.Fraker@house.mo.gov Address 201 West Capitol Avenue, Room 110A Phone573-751-3819 Legislative Asst. Joan Proctor Committees: Professional Registration & Licensing, Workforce Development & Workplace Safety-Vice Chairman, Utilities, Economic Development District 138 - Taney, Christian & Stone Cos. / 2010 Representative Don Phillips / Republican EmailDon.Phillips@house.mo.gov Address 201 W Capitol Ave, Room 135 Jefferson City, MO 65101 Phone 573-751-3851 Legislative Asst. Rosemary Bogg Committees: Health Insurance, Crime Prevention & Public Safety, Transportation, Tourism & Natural Resources-Chairman District 139 - Christian Co. / 2010 Representative Kevin Elmer / Republican EmailKevin.Elmer@house.mo.gov Address 201 W Capitol Ave, Room 408A Jefferson City, MO 65101 Phone573-751-3833 Legislative Asst. Christine Bondurant Committees: Rules, Budget, Professional Registration & Licensing-Vice Chairman, Judiciary-Vice Chairman Page 58 | 2013 Advocacy Book Legislative Resources State of Missouri District 140 - Christian Co. / 2012 Representative Lynn Morris / Republican EmailLynn.Morris@house.mo.gov Address 201 W Capitol Ave, Room 200BC Jefferson City, MO 65101 Phone573-751-2565 Legislative Asst. Anne Vogel Committees: Appropriations-Health, Mental Health & Social Services, Local Government, Health Care Policy, Economic Development District 141 - Webster Co. / 2008 Representative Tony Dugger / Republican EmailTony.Dugger@house.mo.gov Address 201 W Capitol Ave, Room 300 Jefferson City, MO 65101 Phone 573-751-2205 or 417-259-1915 Legislative Asst. Brandon Alexander Committees: Agriculture Policy, Utilities, Financial Institutions-Chair District 155 - Taney Co. / 2010 Representative Lyle Rowland EmailRaymond.Weter@house.mo.gov Address 201 W Capitol Ave, Room 413A Jefferson City, MO 65101 Phone573-751-2042 Legislative Asst. Sandra Schanzmeyer Committees: Retirement, Elementary & Secondary Education, Appropriations-Education-Vice Chairman, Tourism & Natural Resources 2013 Advocacy Book | Page 59 Legislative Resources State of Missouri District 156 - Taney Co. / 2012 Representative Jeffery Justus EmailJeffery.Justus@house.mo.gov Address 201 W Capitol Ave, Room 115H Jefferson City, MO 65101 Phone 573-751-1309 Legislative Asst. Helen Coller Committees: Retirement, Appropriations-Gen Admin, Small Business, Tourism & Natural Resources District 157 - Vacant as of 1/17/13 District 158 - Stone & Lawrence Cos. / 2012 Representative Scott Fitzpatrick / Republican EmailLyndall.Fraker@house.mo.gov Address 201 W Capitol Ave, Room 135AB Jefferson City, MO 65101 Phone573-751-1488 Legislative Asst. Ben Clutter Committees: Budget, Appropriations-Transportation & Economic Development, Tourism & Natural Resources Page 60 | 2013 Advocacy Book Legislative Resources State of Missouri STATE SENATORS Websitehttp://www.senate.mo.gov/ District 20 - Christian & Greene Cos. / 2010 State Senator Jay Wasson / Republican Address Phone Legislative Assts. 201 W Capitol Ave, Room 323 Jefferson City, MO 65101 573-751-1503 or 866-242-0810 Barbara Mustoe, Robin Stone Committees: Financial and Governmental Organizations & Elections, Chairman, Governmental Accountability & Fiscal Oversight, Jobs, Economic Development & Local Government, Small Business, Insurance & Industry, Transportation & Infrastructure, Joint Committee on Corrections, Joint Committee on Life Sciences, Joint Committee on Transportation Oversight, Joint Interim Committee on State Employee Wages, Missouri Job Training Joint Legislative Oversight Committee District 28 - Polk & Dallas Co. / 2010 State Senator Mike Parson / Republican Emailmparson@senate.mo.gov Address 201 W Capitol Ave, Room 420 Jefferson City, MO 65101 Phone573-751-8793 Fax573-526-8793 Legislative Assts. Marylyn Luetkemeyer, Alex Eaton, Bubs Hohulin Committees: Agriculture, Food Production & Outdoor Resources, Government Accountability and Fiscal Oversight, Chairman, Small Business, Insurance & Industry, ViceChairman, Ways & Means 2013 Advocacy Book | Page 61 Legislative Resources State of Missouri District 29 - Lawrence, Stone & Taney Cos. / 2012 State Senator David Sater / Republican Address 201 W Capitol Ave, Room 433 Jefferson City, MO 65101 Phone573-751-1480 Legislative Assts. Tucker Jobes, Robyn Huddleston Committees: Financial & Governmental Organizations & Elections, Jobs, Economic Development & Local Government, Seniors, Families and Pensions, Vice-Chairman, Veterans’ Affairs and Health District 30 - Greene Co. / 2010 State Senator Bob Dixon / Republican Address 201 W Capitol Ave, Room 332 Jefferson City, MO 65101 Phone573-751-2583 Fax573-526-1305 Legislative Assts. Eric Jennings, Tracey Joyce Committees: Financial & Governmental Organizations & Elections, Jobs, Economic Development & Local Government, Vice-Chairman Judiciary & Civil & Criminal Jurisprudence, Chairman Transportation & Infrastructure, Joint Committee on Child Abuse & Neglect, Missouri State Unemployment Council, State Records Commission, Task Force on the Prevention of Sexual Abuse of Children (Erin’s Law) Page 62 | 2013 Advocacy Book Legislative Resources State of Missouri District 33 - Webster Co. / 2012 State Senator Mike Cunningham / Republican Address 201 W Captiol Ave, Room 331 Jefferson City, MO 65101 Phone573-751-1882 Legislative Assts. Doris Broeker, Joan Branson Committees: Commerce, Consumer Protection, Energy & the Environment, Financial & Governmental Organizations & Elections, Vice-Chairman, Governmental Accountability & Fiscal Oversight, Veterans’ Affairs and Health 2013 Advocacy Book | Page 63 Legislative Resources Federal President Barack Obama / Democratic / 2008 Websitehttp://www.whitehouse.gov/contact/ Address The White House 1600 Pennsylvania Avenue NW Washington, DC 20500 Phone Comments 202-456-1111 Switchboard202-456-1414 Visitors Office 202-456-2121 Fax202-456-2461 Comments202-456-6213 Page 64 | 2013 Advocacy Book Legislative Resources Federal US SENATORS FROM MISSOURI Websitehttp://www.senate.gov/ Senator Claire McCaskill / Democratic / 2006 Websitehttp://mccaskill.senate.gov/index.ctm Address Washington DC Office Hart Senate Office Building, SH-717 Washington, D.C. 20510 Phone202-224-6154 Fax202-228-6326 Address Springfield Office 324 Park Central West, Suite 101 Springfield, MO 65806 Phone417-868-8745 Fax417-831-1349 Senator Roy Blunt / Republican / 2010 Websitehttp://blunt.senate.gov/public Address Washington, DC Office B40C Dirksen Senate Office Building Washington, DC 20510 Phone202-224-5721 Fax202-224-8149 Address Springfield Office 2740 B East Sunshine Springfield, MO 65804 Phone 417-877-7814 Fax417-823-9662 2013 Advocacy Book | Page 65 Legislative Resources Federal U.S. REPRESENTATIVES Websitehttp://www.house.gov/ District 1 Representative Wm. Lacy Clay District 2 Representative Ann Wagner District 3 Representative Blaine Luetkemeyer District 4 / Dallas & Webster Cos. / 2010 Representative Vicky Hartzler / Republican Websitehttp://hartzler.house.gov/ Address 1023 Longworth HOB Washington, DC 20515 Phone 202-225-2876 Fax202-225-0148 District 5 Representative Emanuel Cleaver II District 6 Representative Sam Graves District 7 / Christian, Greene, Lawrence, Polk & Taney Cos. / 2010 Representative Billy Long / Republican Websitehttp://long.house.gov/ Address 1541 Longworth HOB Washington, DC 20515 Phone202-225-6536 Fax202-225-5604 Address Springfield Office 3232 E. Ridgeview St. Springfield, MO 65804 Phone417-889-1800 Fax417-889-4915 Page 66 | 2013 Advocacy Book Legislative Resources Federal District 8 / Taney Co. / 1996 Representative Jo Ann Emerson / Republican Website http://www.house.gov/emerson/ Address U.S. House of Representatives 2440 Rayburn House Office Building Washington, DC 20515 Phone202-225-4404 Fax 202-226-0326 Voter Registration Information Registration Qualifications ►► 18 years of age by Election Day ►► US Citizen ►► Missouri Resident Where to Register to Vote Missourians can register to vote: ►► Missouri Voter Registration Application online: http://sos.mo.gov/elections/goVoteMissouri/register.aspx ►► Local Election Authority ►► Depart. of Motor Vehicles ►► At SCIL Main office and Branson Branch Vote At Home: Contact SCIL to learn about absentee voting 417-886-1188 2013 Advocacy Book | Page 67 Notes Page 68 | 2013 Advocacy Book The mission of Southwest Center for Independent Living is to promote a barrier-free environment for all individuals with disabilities through public education and advocacy for social change, and to provide a full range of independent living services, which will assist each in meeting his or her goals for independence. Advocacy| Information & Referral | Peer Support Independent Living Skills | Personal Care Voice/TTY: 417.886.1188 | Toll Free: 800.676.7245 scil@swcil.org | www.swcil.org Main: 2864 S. Nettleton Ave. | Springfield, MO 65807 | Fax 417.886.3619 Branch: 610 S. 6th St., Suite. 201 | Branson, MO 65616 | Fax 417.239.2735 This booklet made possible by Missouri Foundation for Health funding.
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