Partners in Policymaking Coordinator's Handbook October 1995 Special thanks to all the Partners Coordinators who responded to the 1995 Coordinator's Survey. Their participation helped make this Handbook possible. The 1995 Partners in Policymaking Coordinator's Handbook Prepared by: Kathie Snow Texas Partners Graduate and Partners Presenter 250 Sunnywood Lane Woodland Park Colorado 80863 719-687-8194 Voice/FAX in consultation with: Jopie Smith Director of Training and Texas Partners Coordinator Texas Planning Council on Developmental Disabilities 4900 North Lamar Boulevard Austin, Texas 78751 512-483-4089 512-483-4097 FAX 512-483-4099 TDD and Colleen Wieck, Ph.D. Creator of Partners in Policymaking and Executive Director Minnesota Governor's Planning Council for Developmental Disabilities 300 Centennial Building 658 Cedar Street St. Paul, Minnesota 55155 612-296-9964 612-297-7200 FAX 612-296-9962 TDD Funding for this project was provided by the Texas Council for Developmental Disabilities, under P.L. 103-230. For additional copies, contact Colleen Wieck, Ph.D. Partners in Policymaking. Coordinator's Handbook 1995 Table of Contents The Fundamentals A Definition 1 Why Do We Need It? 3 Is Yours a Model Program? 5 Goals and Principles 7 Competencies 9 "Top 10" Values 11 DD Councils and Partners 13 Coordinator Basics Coordinator's Essential Duties 15 Creating an Inclusive Program 19 Coordinator's Self-Evaluations 23 Words of Wisdom 27 True Confessions 29 Directory of Coordinators 35 The Sessions Curriculum 43 National Speakers 45 Best Practice/State-of-the-Art 47 Systems Change 49 Skill-Building Activities 51 History 53 Inclusive Education 55 Sup./lnd. Living/Family Support 58 Supported/Competitive Employment 61 State Legislation 63 Federal Legislation and Vision 65 Assistive Technology-Positioning 67 Parliamentary Procedure 69 Advocacy, Community Org., Media 71 Behavior 73 Other Possible Topics 74 Graduation 75 Minnesota Agendas 77 Texas Agendas 93 Missouri Agenda 109 Oregon Agenda 111 Directory of National Speakers 115 Evaluations & Long-Term Surveys Session Evaluations 125 Sample Session Evaluation 127 Speaker Evaluation & Form 129 Participant Surveys 131 Recruitment/Selection Recruitment 143 Selection Criteria and Rationale 144 Why Select Parents of Young Children 145 Parents + Self-Advocates= Success 148 Steps in Selecting Partners 150 Chart of Demographic Data 151 Reviewer Rating Sheet Instructions 152 Consumer/Self-Advocate Rating Form 153 Parent/Family Member Rating Form 154 Iowa Announcement 155 Missouri Announcement/Application 157 Texas Announcement 163 Sample Announcement 165 Application for Participation 167 Post-Graduate Post-Graduate Support 171 Texas Diploma 173 Texas Press Release 174 MN Negotiation Skills Workshop 177 Minnesota Summer Institute 179 Texas Partner Institute 184 Testimonials 189 Forms Letter of Acceptance 193 Letter for Alternates 195 Letter of Non-Acceptance 196 Partners Contract 197 Partners Profile 199 Partners Instruction Letter 200 Time/Match Record 201 Speaker's Confirmation Letter 202 Speaker's Contract 203 Speaker's Information Checklist 204 Reimbursement Request 205 Instructions for Reimbursement 206 Partners in Policymaking October 1995 Dear Colleagues, Responses from many of you to the recent Coordinator's Survey have enabled us to assemble this new and improved Partners in Policymaking Coordinator's Handbook. We published manuals in 1990, 1992, and 1993 to help when starting a new program, as well as to assist Coordinators in maintaining a quality program. This 1995 Handbook continues that tradition, and includes strategies to help ensure the long term continuation of the Partners program. With the recent political shifts at the federal and state levels, long term funding for programs such as Partners maybe in jeopardy. Partners Coordinators must be aware of how these changes may affect the very survival of their programs. The Handbook addresses these issues and provides ideas for remedies. In a similar vein, some Partners programs in years three, four, and/or five, are being examined very closely by their funding agencies. "What return are we receiving on our investment?" is the question being asked. If this hasn't happened in your state yet, it will at some point. Will you be ready? The Handbook will help you deal with this issue. We hope you will find this Handbook beneficial. Many of you indicated in the recent survey that the 1993 Replication Notebook was your "bible;" that it was used constantly and with great results. We hope this replacement will be used just as often and that it will provide a level of stability for your program in this rapidly changing environment. Cordially, Kathie Snow Jopie Smith Colleen Wieck, Ph.D. Partners in Policymaking A Definition Across the country, hundreds of participants are engaged in the life changing experience of Partners in Policymaking. Yet many are not aware of what the name actually means. The goal of the program is to educate participants to be active partners with those who make policy. They will become partners in policymaking. And this partnership symbolizes positive relationships. Who are the people who make policy? In general, they are the men and women within government who make decisions about rules and regulations, who control the money, and who legislate. Between the local school board and the United States Congress, there are many levels of government and thousands of policymakers. Graduates of a quality Partners program will be equipped with the necessary skills to become partners with anyone in a position to make policy - at the local, state, and federal levels. In today's political climate of radical change, Partners must now work harder than ever to prevent the loss of basic rights for people with disabilities. Partners can change the future by influencing public policy today. Perhaps some graduates will become the school board members, mayors, and legislators who make the decisions that affect us all. Who better to make policy decisions about people with disabilities and their families than people with disabilities and their families? School principals, school boards, city councils, mayors, county and state officials; state senators and representatives, state federal legislators and agencies are just some Partners graduates will influence. Who would you add to this list for the Partners in your state? Is your program providing graduates with the skills they need to influence your list of policy makers? Partners in Policymaking Coordinator's Handbook 1995 For technical assistance, call anytime: Colleen 612-296-9964 Jopie 512-483-4089 Kathie 719-687-8194 2 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Why Do We Need It? Individuals with disabilities and their families have always been the true experts on what they need and what they want in order to have positive, successful lives. Historically, however, systems and governments have dictated what individuals with disabilities receive, which may or may not be what is needed. People with disabilities have typically been faced with, "This is what we have, take it or leave it." Our society has believed that people with disabilities need to be "taken care of," sheltered, and shown the way. This erroneous belief is based on another erroneous belief, that people with disabilities and their families are not competent to make the best choices for themselves. As we entered the 1980s, the problems were many and complex. People with disabilities and families: had been unserved and underserved, had been controlled by "the system," with little or no choices in services, lacked self-advocacy and empowerment skills, had little knowledge of the way local, state, and federal governments operate, were splintered across disability groups, with no shared vision. And the population of national disability advocacy groups was aging, with little or no "new blood" of parents of young children with disabilities or young adults with disabilities. Partners in Policymaking provides solutions to these problems as we approach the 21st century. Today, with a new conservatism sweeping both state and federal levels, Partners is more important than ever. The Republican Contract with America features five principles of their philosophy of American civilization: individual liberty, economic opportunity, limited government, personal responsibility, and security at home and abroad. Partners training always has and will continue to address many of those issues. Partners, with its quality principles and competencies, is a program that transcends the changing political winds. By training Partners in "best practices" over a wide spectrum of issues, they are acquiring the skills necessary to change systems. They become competent to change their own lives, and then to work for changes that will affect others with disabilities at local, state, and federal levels. Partners also create a shared vision, enlarging the power base of disability rights advocates. Partners in Policymaking Coordinator's Handbook 1995 3 Why Do We Need It? (continued) Partners graduates are expected to be long-term change agents. They learn there are no "quick fixes" and they are trained in how to achieve long-term successes. As the number of Partners graduates increases, a network of highly-motivated, powerful individuals are positively influencing the policymakers who shape disability issues at all levels. They're changing the face of disability issues across the United States. They truly are Partners in Policymaking. Partners in Policymaking Coordinator's Handbook 1995 4 Partners in Policymaking Is Yours a Model Replication Program?- Is your Partners program following the quality principles outlined in the 1993 Partners Notebook and in this Handbook? Replication of these principles is important not only for the success of your program, but also for the continued funding of your state's Partners program. When an agency is originally approached to fund a new Partners program, the agency hopes to fund a "sure thing" - a successful leadership training program, with proven, documented outcomes. In today's environment, administrators are very careful where dollars are spent. So the funding is usually approved for replicating the model program. However, cutting corners essentially changes the program into something other than a true Partners in Policymaking program. Why is it important to replicate the model program? 1. The success of the model program has been documented over a long period of time - nine years. Changes to the model program should not be made unless it can be documented that those changes improve the model program. The Partners in Policymaking program is a carefully crafted, outcome-based leadership development course designed to provide information, training, resources, and skill building. The quality principles and curriculum have been formulated by experts from a variety of disciplines; the results have been tested; and successful outcomes documented. The challenging task of designing a superior leadership program has already been done. The Partners curriculum was designed to teach specific competencies in an organized, sequential order. The individual topics collectively form a cohesive body of knowledge that will enable people with disabilities and family members to truly change the direction and future of their own lives, as well as the lives of others with disabilities. We must never forget the very purpose the program was designed to achieve: the education of people with disabilities and family members to enable them to become competent change agents. Partners in Policymaking Coordinator's Handbook 1995 Is Yours a Model Replication Program? (continued) Changes to the program may not be improvements. They may, in fact, dilute the program's effectiveness. If a funder is going to spend the money to pay for Partners, Coordinators need to make sure they deliver the best product - competent graduates -by following the quality principles. 2. From year to year and across state lines, Partners graduates need to be on the same "playing field." Partners in Policymaking was never designed to become a club or organization of graduates. Partners is about individuals working on their own, and collectively, under their own direction;.. by joining existing groups; or Starting., new ones.. Now more than ever, people from the disability community - especially Partners - need to assist each other when advocating for disability rights at the local, state and federal levels of government. In order to be successful in these efforts, Partners graduates need to have achieved the same levels of competency across state lines. Partners graduates may call graduates from other states to network and for grassroots advocacy. Imagine the surprise when some graduates discover they haven't learned as much as the other graduates. Some Partners from across the nation have expressed disappointment that they weren't trained in certain competencies that other Partners acquired. When the Partners program is modified from the replication model without documented proof of improvement, we are robbing parents and self- advocates of critical knowledge and the same opportunities for success that other Partners are enjoying. We must ensure that ALL Partners graduates achieve the same high levels of competencies as outlined by the quality principles (and found throughout this Handbook). 3. When the replication model is followed, every Coordinator has a "base" to help maintain quality. The use of this Handbook, coupled with replicating the model program, will enable Coordinators and funders to maintain the highest quality standards. When changes are made to the program that compromise the principles or competencies, no standard exists for comparison. To maintain the highest standards - in order to graduate the most competent Partners - one must have a frame of reference. The replication model provides that. 4. Following the replication model frees the Coordinator and possibly, the funders, from the overwhelming task of trying to "reinvent the wheel." The replication model is proven. Following the "recipe" allows the Coordinator to fine-tune the program in other areas, while leaving the proven curriculum intact. Partners in Policymaking Coordinator's Handbook 1995 6 Partners in Policymaking Goals and Principles Partners is the answer to the question, "What would happen if individuals with disabilities and family members had the training necessary to make them leaders in positive change efforts?" Partners in Policymaking is an innovative leadership training program for parents of young children with disabilities and for adults with disabilities, designed and created in 1987 by Colleen Wieck, Ph. D., Director of the Minnesota Governor's Planning Council on Developmental Disabilities, and Ed Skarnulis, Ph. D., of the Minnesota Department of Human Services. The quality model of Partners in Policymaking responds to the paradigm shifts in the disability field. The quality principles have been refined over time, after being proven and documented. Partners is designed to educate and empower its participants to achieve systems change at the local, state, and federal levels. This is a unique training program designed to encourage its participants to alter the future...it is designed for the next generation. Partners is not about perpetuating the status quo of today's systems; it's about creating new possibilities for the future. Through state-of-the-art training from leaders in the field, Partners learn histories, philosophies, and concrete strategies for creating systemic change in disability areas. The Partners in Policymaking curriculum includes: History of services for and perceptions of people with disabilities. The histories and significant contributions of the parents' movement, the independent living movement, and the self-advocacy movement. People first language. Inclusive education. Person-centered planning and inclusive community living. Service coordination and/or state systems. Assistive technology and positioning techniques for people with severe physical disabilities. Identifying critical disability issues at the local, state, and federal levels, and designing strategies for effective systems change; Parliamentary procedure, community organizing, advocacy, and working with the media. Partners in Policymaking Coordinator's Handbook 1995 7 Goals and Principles (continued) e The Quality Principles of Partners in Policymaking A full-time coordinator dedicated to the success of the Partners program by carrying out the essential duties as described in this Coordinator's Handbook. Sufficient funding to ensure the acquisition of all competencies by Partners through fully funding eight weekends (128 hours minimum) of intensive training. A comprehensive and thorough recruitment and selection process of highly-motivated participants to ensure the best outcomes for systems change and the long-term success of the program. Assuring an appropriate mix of participants in each class, to include an approximate ratio of 70Y0 parents to 305%0 adults with disabilities, representing all areas of the state, a variety of disabilities, different socioeconomic groups, diverse ethnic groups, and both genders. Featuring a variety of nationally-known for each of the eight sessions. Long-term commitment to the program and post-graduate support for Partners to ensure successful on-going efforts in systems change. Full inclusion of and participation by all Partners in the program via appropriate accommodations and modifications. Implementation of the published Partners curriculum which is designed to educate participants in both philosophies and critical strategies for change through readings, small group exercises, and extra assignments. The Coordinator's constant self-evaluation to monitor his/her own effectiveness as well as the program's level of quality, along with the willingness and ability to improve the program as needed to attain the highest quality. Monitoring outcomes of Partners via individual long-term evaluations in key areas of personal growth and participation in advocacy activities. Upon graduation, Partners can demonstrate the competencies detailed in this Handbook. 8 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Competencies Upon graduation, Partners will be able to: 1. Describe the history of services for, and perceptions of, people with developmental disabilities. 2 Describe the significant contributions of the parent, self-advocate, and independent living movements. 3. Note important ways in which self-advocacy (People First movement) differs from advocacy for others and why the difference is important. 4. Describe People First Language and why its use is of critical importance 5. Describe the reasons for quality inclusive education. 6. Outline specific strategies to achieve inclusion and quality education. 7. Demonstrate how to be assertive in team meetings. 8. Understand the concepts of person-centered planning and what support are necessary to be fully included in the community. 9. Understand the types of supports necessary for creating a positive home environment, such as family support, natural supports, and/or Medicaid waivers. 10. Understand that a flexible, responsive system of supports for the families of children with disabilities is the cornerstone for a true system of community supports for people with developmental disabilities. 11. Demonstrate an understanding of the need for all individuals to experience changes in lifestyle across the lifespan. 12. Describe the importance of home ownership/control as one of the defining characteristics of adult life in our culture. 13. Outline the basic principles and strategies being used to support people with developmental disabilities in their own homes across the lifespan. Partners in Policymaking Coordinator's Handbook 1995 9 Competencies (continued) 14. Understand the concepts of supported and/or competitive employment including the use of natural supports. 15. Demonstrate a knowledge of the service coordination system and/or the state service system and describe what services may be available. 16. Describe the importance of positive approaches to behavior change. 17. Describe how a bill becomes a law at the state and federal levels. 18. Draft and deliver testimony for legislative hearings. 19. Identify critical federal issues and the process by which one can personally address concerns. 20 Demonstrate how to meet a public official and express views and concerns. 21 Describe a vision for the year 2010 and beyond for people with disabilities. 22. Understand the reasons for and the importance of proper positioning techniques for people with disabilities. 23. Describe examples of assistive technologies for people with disabilities. 24. Demonstrate a knowledge of parliamentary procedure and appropriate methods for running a meeting. 25. Demonstrate successful techniques for advocating for services to meet the needs of individuals with disabilities and families. 26. Identify strategies for beginning and sustaining grass roots level organizing. 27. Identify how to use the media to effectively promote issues. NOTE: Remember to distinguish between competencies and activities. Knowing how to complete forms, for example, is an activity, not a competency. Partners competencies are focused on best practices in disability issues and strategies to use when influencing policymakers. 10 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking "Top 10" Values A quality Partners in Policymaking program is built on critical values relating to the inherent worth of people with disabilities. These values must be the underlying thread woven throughout every aspect of the training program. Value #1: People with disabilities are people first. They are not "the handicapped" or "the disabled." Using People First Language is a must - no labels. Value #2: People with disabilities need real friendships, not just relationships with paid staff. Value #3: People with disabilities are entitled to the full meaning of the First Amendment right to free speech. The ability to communicate, in whatever form, must be available to every person with a disability. Value #4: People with disabilities must be able to enjoy full mobility and accessibility that allows active participation in community life. Value #5: People with disabilities must be assured continuity in their lives through families and neighborhood connections. Value #6: People with disabilities must be treated with respect and dignity. Value #7; People with disabilities need to be in positions to negotiate to have their wants and needs met. Value #8: People with disabilities must be able to exercise choice in all areas of their lives. Value #9: People with disabilities must be able to live in the homes of their choices with the supports they need. Value #1 O: People with disabilities must be able to enjoy the benefits of true productivity through employment and/or contributions as members of their communities. Partners in Policymaking Coordinator's Handbook 1995 11 For Your Notes 12 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking DD Councils and Partners: Responsibilities and Relationships Most Partners in Policymaking programs are funded wholly or in part by state Developmental Disabilities Planning Councils. In some states, other agencies or consortiums also provide funding. In any event, Partners programs exist because DD Councils (funders) value the Partners product: new leadership in the state. Councils makes significant investments and commitments when they fund Partners. The return on the investment is long term, as Partners across the state achieve successes in legislative advocacy, systems change, and grass-roots organizing. The relationship between a DD Council and a Partners program is more than that of a giver and receiver. . DD Councils and Partners programs forge a bond that transcends the financial association Partners in Policymaking Coordinator's Handbook 1995 13 DD Councils and Partners (continued) The 12 Steps to Success for DD Councils 1. Hiring a full-time, qualified Coordinator. 2. Incorporating the Coordinator's Essential Duties from this Handbook into the Coordinator's job description and/or contract. 3. Fully funding the program for the prescribed eight sessions to ensure all competencies are achieved by all participants. 4. Requiring regular, timely debriefings and full reports to the Council from the Coordinator about the Partners program. 5. Requesting personal testimonials from Partners graduates about their Partners experience. 6. Encouraging and assisting Partners graduates to serve on the Council and/or other significant, influential boards. 7. Retaining an outside, independent evaluator to measure the program's outcomes, via initial, six-month, and long-term surveys. 8. Attending Partners sessions as observers (not participants). 9. Attending graduation ceremonies. 10. Adding Partners graduates to Council mailing lists, etc. 11. Creating and maintaining a system of on-going contact between the Council and Partners graduates. 12. Determining what the connection should be between the Council and Partners graduates; then creating and maintaining the supports to preserve that connection. 14 Partners in Policymaking Coordinator's Handbook 1995 Coordinator's Essential Duties (continued) 18. I will recruit nationally-recognized speakers who are leaders in their field who will instruct Partners in "best practices" in disability issues. 19. I will ensure that speakers present not only philosophies of disability issues, but also concrete information and specific strategies to create systems change. 20.. I will ensure that each speaker has a clear understanding of what is expected from his/her presentation, and what competencies should be achieved by participants during the session. I will also inform the speaker of the unique and individual dynamics of the members of the Partners class, so that the speaker is presenting information geared to the level of understanding of the class, e.g. basic philosophy, basic or advanced strategies, etc. 21. I will communicate with speakers ahead of time regarding our use of sign language interpreters, foreign language interpreters, and/or other types of accommodations provided. I will ask speakers to send their notes/materials ahead of time to assist the interpreter(s) in providing the best possible service. 22. I will ensure that each speaker understands exactly when and where his/her presentation time(s) are via written personal communication and by mailing him/her the session agenda well in advance of the scheduled presentation. 23. I will inform every speaker of the date I need their hand-outs prior to his/her presentation, in order to be able to copy them and include them in the monthly packets for participants. 24. I will clarify with the speakers, via written requests forms, their audio/visual needs: slide projector, screen, overhead projector, videotape player and TV monitor, etc.; their hotel accommodations; and any other needs they might have in order to ensure a successful presentation. 25. I will clarify with the speakers via their contracts who is financially responsible for what expenses, e.g. transportation, meals, incidentals, etc. 26. I will arrange for and/or provide the speakers' hotel accommodations and transportation from the airport to the hotel. I will provide the speakers with the name, address, and telephone number of the hotel, along with directions from the airport to the hotel. 27. If videotaping or audiotaping the training sessions, I will solicit and receive prior permission from the speaker to record his/her presentation. These recordings may be used by Partners who require review or repetition in order to learn and/or acquire the competencies. Partners In Policymaking Coordinator's Handbook 1995 17 Coordinator's Essential Duties (continued) 28. If videotaping or audiotaping the training sessions, I will ensure that the appropriate personnel are in place with the appropriate equipment in order to successfully and unobtrusively record the sessions. I will maintain a box of supplies for use during the session which will include: flip charts, markers, 3 hole punch, masking tape, extra name tags, sharpened pencils, writing tablets, hand-outs of previous sessions, extra tapes when recording sessions, and any other materials necessary to ensure a smooth, worry-free session. 30. I will be an active observer of every Partners session, remaining in the meeting room during the session, to assess the speakers' presentations, to gauge Partners' participation, and to self-evaluate the success of that session. 31. I will assess all aspects of my state's Partners program regularly, via self- evaluation, Partners' evaluations, and outside evacuation, and will make whatever improvements are necessary to ensure that the program reflects the highest quality standards. 32. 1 will provide post-graduate support for Partners to ensure that graduates can and will continue the systems change advocacy learned during their training. 33. I will not delegate any of my essential duties to Partners graduates or others who are not paid staff of the program. 34 I will seek funding for Partners from sources who: support the vision of a Partners in Policymaking quality model, believe in the value of empowerment, and will nurture the efforts of the Partners staff and its participants. 35. I will regularly provide detailed reports about the program to the funding organization 18 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Coordinator's Essential Duties 1. I will ensure that the recruitment of the Partners class results in a diverse group of qualified individuals: parents of young children with disabilities and adults with disabilities, from ail parts of the state, with various disabilities represented. These participants will be ready and willing to learn a new way of thinking and will use this knowledge to achieve systems change at local, state, and federal levels. 2. I will ensure that Partners sessions reflect the values being taught: inclusion, empowerment, and respect for all individuals in the program. 3. I will personally visit the hotel site prior to booking to verify accessibility in hotel guest rooms and bathrooms, elevators, meeting rooms, public restrooms, restaurants, bars, entrances, and parking areas. 4. I will ensure that meeting rooms and dining areas are setup in a manner that will allow complete wheelchair access throughout the room, including access to the tables in the front of the room, to the podium, to meal service tables, etc. 5. I will work with the hotel staff to assure that all persons involved in Partners are treated with dignity and respect. 6. I will familiarize myself with the meeting rooms of the hotel, including the thermostat, lights, microphones, etc., and I will work closely with the hotel staff to have contingency plans in place in case of any problems and/or mechanical failures. 7. I will ensure that microphones are used by everyone speaking to the group: myself, presenters, participants asking questions of the speaker, The use of microphones will enable all Partners, guests, and speakers to hear what's being said. In addition, the use of microphones by Partners will allow them to become comfortable with the use of microphones prior to their graduation. 8. I will ensure that meetings are run on schedule, respecting the valuable time of each participant and each speaker. In addition, all Partners and speaker will have a clear understanding of expectations. Partners in Policymakmg Coordinator's Handbook 1995 15 Coordinator's Essential Duties (continued) 9. I will ensure that necessary adaptations to reading materials (including simplifying the materials, translation into other languages, Braille, etc.) - are made to provide equal access to every part of the Partners program for self- advocates with disabilities. Further, I will make all presenters aware of these needs in advance to ensure that every Partner will receive the full benefits of and enjoy full participation in each session. 10. I will design all sessions to ensure that all Partners have the opportunity to learn that session's competencies. The critical factors include: the selection of the speaker and his/her topic, hand-outs, activities, small group exercises, and homework. 11. I will ensure that every session has a combination of learning methods, to include presentation, discussion, and exercises, to assure full participation by each and every Partner. 12. I will structure the year's program so that Partners learn competencies in a logical, sequential order, with each session adding to the completeness of the program. 13. I will ensure that every participant has an accurate agenda for each session at least two weeks in advance (preferably one month in advance, at the previous session). Each agenda will be specific as to starting and ending times of each topic during the weekend, break and meal times, meeting room locations, types of activities during each session, e.g. lecture, small group exercises, etc. 14. I will prepare packets of information for each participant, for every session, which will include the agenda, hand-outs from the speakers, biography of the speakers and their addresses, other reading materials, homework assignments, evaluations, and reimbursement forms. 15. I will encourage all Partners to write thank you letters to speakers and/or guests, both as an exercise in letter writing and also as a means of Partners expressing appreciation to the speakers/guests for impacting the Partners' lives. 16. I will ensure open communications among Partners staff, participants, speakers, and guests. 17. I will actively encourage and facilitate, when necessary, friendships and relationships between parents and self-advocates in the Partners class, in order to develop the camaraderie necessary for a successful long-term Partners network. Partners m Policymaking Coordinator's Handbook 1995 Partners in Policymaking Creating an Inclusive Program You recruited Partners. You booked the hotel. You contracted speakers. Your program begins and Partners learn about disability rights, inclusive education, and inclusive communities. But are all your Partners truly included in your program? Is there plenty of space at every table in the meeting and eating rooms for wheelchairs? Can participants who use wheelchairs or walkers sit at tables in the front of the room a: well as in the back? Or is their only accessible route to the tables closest to the door? Do most of the people using wheelchairs congregate at the same one or two tables? If they can get to the front, is it easy or is it a difficult task requiring others to move chairs and tables for them? Do all the tables in both the meeting rooms and the eating rooms have supplies of flexible straws for those who have difficulty drinking from a glass? Does everyone who speaks during a session, from presenters to participants asking questions, use a microphone so that everyone can hear what's being said? Are buffet tables and snack tables arranged to allow everyone, including those with visual and physical disabilities, the opportunity to serve themselves as independently as possible? Are the podium, projector screen, and any other visual aids positioned to allow unobstructed viewing by all participants? Are all other parts of the meeting site, including sleeping rooms, lobby areas, restaurants and bars, restrooms, entrances, and parking areas accessible to people with disabilities? Partners in Policymakmg Coordinator's Handbook 1995 19 Creating an Inclusive Program (continued) Are large print, Braille, modified, and/or foreign language materials provided to those who need them at e the very same time others receive their 1 materials? Or do they have to wait to get theirs? If you're providing a tape recorder for a Partner to use during a session, do you always have a ready supply of tapes and batteries on hand in the meeting room? Do skill-building activities (role play, small group exercises, etc.) provide opportunities for full and equal participation by all Partners? Or are participants with disabilities often left out? When dimming lights for an audio-visual presentation, are the-needs of participants with low vision taken into account? I Are people who have speech difficulties and/or communication devices afforded the time to fully express themselves? Or does another person jump in to help them finish? Are participants who need help reading and/or comprehending new information receiving modified materials (handouts, reading assignments, etc.,) If so, do they receive their materials at the same time everyone receives the material? / / Are the needs of participants with disabilities discussed openly and honestly, in an adult fashion, with the person directly? Or are the person's needs "taken care of" by someone else with little or no input from the person with needs? Are others in the class made aware of and educated about these needs so that everyone assumes some responsibility for assisting each other? Are there many paid and/or volunteer helpers in the room as "service providers" who perhaps do too much for people with disabilities and get in the way of Partners getting to know one another? Or are Partners able to depend on the natural Support of each other, as friends always do? Is there a balance between these two scenarios? 20 Partners in Policymaking Coordinator's Handbook 1995 Creating an Inclusive Program (continued) These are just some of the needs facing Partners Coordinators and Partners participants. The needs may change from year to year. But the one constant is: If the Coordinator, individually, and the class, as a whole, cannot model and create an inclusive environment `:'" during a Partners weekend, then Partners cannot be expected to achieve inclusion in their communities! For a program to be successful, every Partners weekend every Partners activity every Partners meal must be a model of inclusion. \ / Partners in Policymakmg Coordinator's Handbook 1995 21 For Your Notes. . . ?, 22 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Coordinator's Self-Evaluation In addition to evaluating individual Partners sessions and the outcomes of graduates, it's important to evaluate yourself. Your actions, attitudes, and demeanor all have a profound effect on the success of the Partners program. Partners Coordinators come from diverse backgrounds. Some are Partners graduates, some have other experiences in the disability arena, and still others have credentials as trainers. The Coordinator's position is unlike any other - a combination of trainer, friend, travel consultant, master scheduler, and more, much more. To be effective, the Coordinator must model the values of inclusion. The deeply personal nature of relationships among Partners, Coordinators, and presenters requires that the Coordinator possess the highest level of professionalism. The Partners program evokes incredibly strong emotions from its participants. It's a life changing experience for most of them and many Partners may be extremely vulnerable during certain parts of the program. Coordinators must be very aware of their potential to influence not just the essence of the program, but also the very lives of the participants in the program. How are you doing in this regard? Are you supported by other staff members and/or DD Council members? Do you support the views and other activities of the Council? Do you bring into the sessions an open mind, a caring attitude, and an optimistic outlook? Do you view yourself as a leader and a teacher with all the responsibilities inherent to those roles? Are you able to master the fine art of being friends with Partners without taking on their personal issues and problems? Do you bring to the sessions hidden agendas or do you leave those at the office? . Partners in Policymaking Coordinator's Handbook 1995 23 Coordinator's Self-Evaluation (continued) Do you take a proactive, rather than a reactive, role in working to solve any and all problems you face as Coordinator? Do you seek out the appropriate help you need to solve the issues? 1 Do you believe in and promote the values, principles, and ideals set forth in this manual? Do you take good care of yourself away from the program so that you're able to help with the needs of others during Partners weekends? Do you know it's o.k. to not be perfect? That you're not in this alone? That Coordinators who seek counsel and support from others feel better about their efforts and their programs? Do you recognize the power of the Partners program to change lives? And do you understand the importance of your role in that process? In addition to this very personal inventory, take the time on a regular basis to evaluate your actual performance after each Partners session. Then once a year (or more often) evaluate yourself on your overall performance. Those self-evaluation forms follow. The ability to monitor your own performance and the willingness to be self-critical will help you attain the highest quality standards not only for yourself, but for your Partners program, as well. 24 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Coordinator's Self-Evaluation for Each Session Copy this self-evaluation and grade yourself after each session. Use the results to help you maintain the highest qualify Partners program. Always Never 5 4 3 2 1 1. The meeting rooms and dining rooms were set up to be accessible, allowing wheelchair access to all tables in the rooms. 2. Microphones were used by everyone speaking to the group, including myself, speakers, and Partners who asked questions. 3. This session was run on schedule, per the prescribed times on the agenda. 4. Necessary curriculum modifications and adaptations were made for those Partners needing them. 5. The session had a combination of learning methods, including lecture, discussion, and exercises. 6. Partners received packets with appropriate hand-outs, homework, readings, agenda, and evaluation and reimbursement forms. 7. I encouraged Partners to write thank-you notes to this session's presenters. 8. This session included nationally-recognized speaker(s) who instructed Partners in "best practices" in their subject area. 9. Presentations this session included philosophy as well as concrete strategies for systems change. 10. The speakers presented information that allowed Partners to achieve the competencies for this session. Partners in Policymaking Coordinator's Handbook 1995 25 Partners in Policymaking. Coordinator's Annual Self-Evaluation Post-Graduation Copy this self-evaluation and use it to grade yourself at least once a year. Use the results to help you maintain the highest qualify Partners program. Always Never 5 4 3 2 1 1 The widest means of recruitment were utilized in the recruitment of applicants for this Partners class. 2 The selection process yielded a qualified group of participants with the appropriate disability, geographical, gender, and socioeconomic representations. 3 I selected a hotel site that was accessible. 4 I worked with the hotel staff to ensure people with disabilities were treated with respect and dignity. 5 I familiarized myself with the meeting and dining areas and had contingency plans in place with the hotel in case of problems or equipment malfunctions. 6 I ensured that open communication existed among Partners staff, participants, speakers, and guests. 7 I actively encouraged and helped facilitate, when necessary, friendships and relationships between Partners. 8 I maintained effective communication with speakers during the year to clarify presentation requirements and travel details. 9 I actively observed every Partners session, remaining in the meeting/dining rooms, except during emergencies. 10 I am assessing the Partners program's effectiveness on an on-going basis, via self-evaluation, Partners evaluations, and long-term surveys. 11 I am providing long-term post-graduate support for Partners. 12 I do not delegate any of my essential duties to Partners or others, unless they are paid staff. 13 I regularly provide detailed reports about the program to the funding organization. Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Words of Wisdom Valuable bits and pieces from Coordinators here and there! About "visitors" in the sessions . . . "We learned not to have a lot of `visitors' in our sessions - including Partners graduates! Each class needs to bond together, to learn to depend on each other. That can't happen if others are there to help all the time. Each class is unique with its own personality. Let them grow together without interference from their `big brothers and sisters'. There's time later to bring members of different classes together. " Speakers more than once? "We had several speakers that could effectively teach more than one subject. So we had one come back twice in the same Partners year. it didn't work. Even though the topics were different, the Partners felt they were getting a repeat from the person's first presentation months before." [NOTE: This does not mean a speaker cannot cover different themes within the same weekend.] Too many details? "In our first year, I was so excited that I went overboard on details. I would list on the agendas what was going to be served at the meals. What a mistake! The Partners who didn't like roast beef - or whatever - had all afternoon to think about how much they were going to hate dinner!!!" The Speaker didn't show up! "I like to have a back-up speaker in case of emergencies, but it doesn't always work out. So I've acquired a library of excellent video tapes that relate to the Partners topics. I have my supply on hand and when a presenter got lost and was an hour late, I was able to show a video on the subject matter until the speaker arrived." Partners like to talk . . . "Our Partners really like to talk and share with one another. I wanted to schedule time in the agenda for this, because I know it's important. At the same time, I didn't want to take time away from speakers and activities. So, we have a microphone with a long cord at meal times. After everyone is close to finishing eating, we pass the microphone around and everyone gets a chance to shine!" ...and talk . . . "Introductions on the very first weekend was a problem. I knew everyone should be introduced, but some people talked so long about themselves, that others didn't have time to say hardly anything. Plus, some people were bored and irritated by the ones Partners in Policymaking Coordinator's Handbook 1995 27 Words of Wisdom (continued) that went on so long. Using a planned icebreaker exercise made the process fun for everybody. It also helped me keep on time." Leadership by committee? "Our Council felt that a Partners Committee (made up of Partners, themselves) should be the driving force behind our program. It sounded like a good idea at first: Partners running Partners. However, it caused more problems than solutions . . .Committees just don't work when it comes to maintaining a good program." Sex, Alcohol, and Partners . . . "We've had some problems with Partners enjoying themselves a little too much . . . too much alcohol and what seemed to be hanky-panky after hours during the Partners weekend. We tried resolving it by talking to folks, but that doesn't always work. We're now working on an official policy regarding the use of alcohol and sexual harassment." You're Not Getting Older, You're Getting Better??? "We decided to add older parents to our group. It was a mistake. The older parents were cynical, didn't want to collaborate, and were overall `downers. ' The program is designed for young parents and now we know why!" Double Your Pleasure, Double Your Fun? "A few parents have literally begged us to let their spouses come to Partners with them. When we told them we only had funding for a certain number of people, they said they would pay their own way for the husband or wife. We did it - had two couples in one class. Not a good idea, we found. Because the couple sticks together, they don't interact with others very much. They don't `bond' with the whole class. Also, when the issues facing families include the spouse . it's hard to ventilate about that when the person is sitting right there!" Partners Presents = Good Beginnings/Great Endings Two states have reported they have canvas tote bags for each Partner at the very first session. The inexpensive totes are personalized with each state's Partners logo. Other states have provided specially designed T-shirts and sweatshirts. A nice touch! Too Many Attendants Spoil the Class . . . "Trial and error taught us a valuable lesson. We no longer allow attendants/facilitators to sit at the Partners' tables. Many folks need their attendants close by, but sitting them at the tables caused problems: attendants often participated as if they were Partners; many `took over, ' not allowing Partners to participate on their own; they spoke for the Partners without giving them a chance to speak for themselves; and their physical presence at the tables - between Partners - set up barriers to Partners really getting to know each other and help each other. We value the contributions of the attendants, but we have to work hard to ensure Partners receive the benefits of being fully included in our program. Facilitators often `get in the way' of that process." 28 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking True Confessions The Coordinator's Survey revealed that Coordinators have dealt with a variety of issues surrounding Partners participants. The lessons individual Coordinators have learned can be beneficial to all Coordinators. In many cases, difficulties can be prevented by outlining, in detail, the requirements for participation in the Partners contract, and by reviewing these during the first session. Whenever possible and appropriate, let Partners solve the problems themselves. Utilize the "natural" leaders in your group. Following is a listing of some of the difficulties experienced along with potential solutions: ISSUE Parents of adult children (Partners) wishing to hover over and facilitate for their children. RESOLUTION Be up front with the parents (or other family members) in the very beginning. When selecting self-advocates who have relied on their parents for support, accommodation, etc., plan ahead and identify an "outsider" to be the assistant facilitator for Partners sessions. When possible, seek the assistance of the self-advocate in identifying/locating such an assistant. If Partners is to teach people with disabilities how to achieve interdependence, it cannot be done with parents in the room. If parents must attend the sessions in order to help with personal needs (toileting, bathing, etc.) inform them that Partners sessions are for Partners only and that you'll call them if they're needed. Many states have adopted the hard and fast rule of, "No parents of Partners allowed!" ISSUE Personal care attendant chosen by group home for person with a disability is not the right person and/or not the person wanted by the person with the disability. RESOLUTION Be proactive and supportive of people with disabilities in exercising their rights to choose an assistant. Develop a listing of assistants you can feel comfortable with and depend on. Hopefully, one from your cadre will meet the needs of the Partner. Partners in Policymaking Coordinator's Handbook 1995 29 True Confessions (continued) ISSUE Partners bring family members/friends to sessions. RESOLUTION The contract signed by Partners must detail that no guests are to attend Partners sessions or activities. At the very first session, details of the contract should be verbalized by the Coordinator as a reminder. When a Partner does bring a guest, a copy of the contract should be provided to the Partner, followed by discussion about why guests are not permitted. If the action continues, the Coordinator may ask the Partner to resign and apply another time when conditions are more suitable for the person to attend Partners per the contract. ISSUE The feeling that self-advocates with cognitive impairments are not getting much out of the program, materials aren't modified/adapted, or facilitator is not making necessary adaptations. RESOLUTION The following ideas may be beneficial in helping some self-advocates get the most out of Partners: Utilize the "Concept Highlights" in your Partners Curriculum manual which provide easy-to-understand ideas. Adapt materials appropriately. Provide as many materials as possible a week or so prior to each session. Debrief the session soon after it ends, using Partners staff member or a Partners participant Provide facilitation/homework between sessions. Use more small group exercises during sessions. Provide audiotapes of the sessions and homework (reading materials). When appropriate, discuss this ahead of time with speakers, and see if this speaker can utilize the self-advocates experiences during the session. . . use self-advocates as "teachers." ("Mary, how many wheelchairs have you had in your life?" "Tom, when you were mainstreamed, were you really included?") Coordinators must recognize that all people - including those with significant cognitive impairments - learn differently, process information differently, and will use the information differently. In every class of Partners, Coordinators will discover the widest possible spectrum of learners, activists, etc. Coordinators should ensure that all Partners are participating at whatever levels are right for them. We don't know what people are capable of until they're allowed to flex their own muscles in their own way in their own time. Assume the best, expect the best. Partners is working right when diversity and variety are celebrated! 30 Partners in Policymaking Coordinator's Handbook 1995 True Confessions (continued) ISSUE Difficulties in recruiting most appropriate candidates, e.g. African- Americans, parents of younger children, etc. RESOLUTION Coordinators often use existing mailing lists from disability organizations and agencies when soliciting applicants. In most cases, the use of these mailing lists yields a good cross-section of candidates. However, Coordinators may often need to utilize "non- disability" mailing lists. When recruiting minority candidates, contact minority-owned newspapers; local/state organizations with ties to minorities, e.g. NAACP, Native American, Asian-American groups, etc.; churches; and/or other contacts in your area. In many cases, it would prove beneficial to have your application brochures translated and printed in the appropriate language for the group you're recruiting. In recruitment of parents of younger children, contact Early Childhood Intervention programs, the Child Find Coordinator in the targeted area, neighborhood (typical) daycare centers, churches, etc. Find alternate ways to get the information to potential candidates. If you can't obtain a mailing list from the above mentioned groups, ask if they'll include a press release or short article about Partners in their newsletters/mail- outs. Some may be willing to include your invitation letter with their mailings, if you provide the copies. Spread the word of who you're wanting to target and get creative ideas from others in your community. Federal law mandates that programs receiving federal funds include "cultural competence." Translation: a Partners program must be culturally diverse not only in its recruitment and selection of participants, but also in its selection of presenters and activities. ISSUE Partners abusing reimbursement expense requests. RESOLUTION At the first session, and thereafter when necessary, the Coordinator should detail carefully the reimbursement process. Make sure it's all included in the Partners contract, as well. Be very direct and firm about what is covered and what's not - both in the large group discussions as well as with individual Partners. Unfortunately, the Partners experience is the first time many parents and self-advocates have been away from home, in a fancy hotel, etc. and the temptations may feel great. When an inflated reimbursement request is submitted, a one-on-one conversation is in order. If the pattern persists, new/different limits may need to be established. Coordinators can stress the rules and regulations they must all live with under State governments: that reasonable expenses are the rule. Partners in Policymaking Coordinator's Handbook 1995 31 True Confessions (continued) Experienced Coordinators warn of participants "double-billing;" charging Partners for respite care when that service is being paid for by someone else, for example. Also, some Partners choose the most expensive form of travel, instead of the most economical (flying vs. driving). Treat all participants as the adults they are, be firm, be sure, and be swift in correcting the problem. ISSUE Participants complaining about hotel, food, each other, etc. RESOLUTION This can be a real bugaboo! Instead of being appreciative of the benefits they're receiving, some Partners may be natural complainers about any and everything and can often infect others with this way of thinking. At the first session, stress that "Being a participant in Partners is a privilege, not a right." Partners are thereto work and learn, and certainly creature comforts are important. Stress this in as many ways as possible. Draw participants back to the reason they're in Partners. If accessible accommodations are a problem, Coordinators do need to remedy this immediately. It may mean the difference between a person being able to attend Partners or having to drop out. In addition, Partners programs should model inclusion and accommodation. Difficulties between Partners are best left to the Partners to work out. Coordinators should not be baby-sitters, mediators, parents, or anything else except Coordinators. Remind people that they're there to learn and what better way to learn than to solve the problem first hand. If possible, let it be a group problem solving exercise (on their own time). Or, you might enlist the assistance of one of the "natural" leaders in your class. One savvy Coordinator, when faced with complaints about the food, offered the task of meal selection to the Partners themselves. She explained what the task entailed - considering budgets, table service vs. buffet, etc. There were no takers and no more complaints about the food! ISSUE Participants arriving late, leaving early, or not showing up at all with no excuse. RESOLUTION Ensure that attendance and punctuality requirements are detailed in the Partners contract. Discuss these at the first session and as necessary throughout the year. Chronic offenders need to be asked to resign and re-apply when they can make the time commitment. Deal with this issue quickly before other participants decide, "If she/he can do it, so can l." Remind Partners of the financial investment the program is making in them! 32 Partners in Policymaking Coordinator's Handbook 1995 True Confessions (continued) ISSUE Partners dominating sessions with their own "war stories, " asking inappropriate questions of speakers during sessions, and/or otherwise disrupting the sessions. RESOLUTION Discuss this in the beginning of the Partners year. Suggest that personal questions to the speakers should be addressed during break or meal times. Speak privately to the individual creating the disturbance. You should also alert speakers about the need to keep personal questions, etc., out of the general sessions. If necessary, inform speakers if there are particular individuals to be aware of in this regard. Another option, especially if other Partners are complaining to you about the offender, is to let the Partners discuss this and problem solve together. There's nothing like peer pressure! Partners in Policymaking Coordinators Handbook 1995 33 For Your Notes 34 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Directory of Coordinators As of October 1995 This Directory will be updated and sent to you on a regular basis, Please notify us of any changes and/or corrections to the following information. In addition, please refer requests for copies of this Directory of Coordinators to Colleen Wieck. ALABAMA Ms. Sheryl Matney, Director 334-270-4674 Montgomery Partners in Policymaking of Alabama 800-846-3735 Nationwide P. o. Box 3710 334-270-9371 FAX 200 Interstate Park Drive 334-566-7180 Troy, AL Montgomery, AL 36109-0710 ARKANSAS Ms. Mary L. Edwards, LSW, Coordinator 501-661-2589 Partners in Policymaking 501-661-2399 FAX Governor's Developmental Disabilities Planning Council Freeway Medical Tower 5800 West 10th, Suite 805 Little Rock, AR 72204 CALIFORNIA Ms. Vennia Friedman 916-441-0400 Partners in Policymaking 916-441-5635 FAX United Cerebral Palsy 3001 "E" Street Sacramento, CA 95816 COLORADO Ms. Mama Ares Thompson 303-665-2145 Voice/FAX Partners in Leadership 800-569-1825 (CO only) P. O. Box 894 Louisville, CO 80027 DELAWARE Ms. Gail E. Launay 302-628-9308 Voice/FAX Partners in Policymaking 2608 Tharp Road Seaford, DE 19973 Partners in Policymaking Coordinator's Handbook 1995 35 FLORIDA Ms. Martha (Pete) Wesley 813-680-1645 Voice/FAX/DD Coordinator Partners in Policymaking 2425 Woodley Avenue Lakeland, FL 33803 GEORGIA Ms. Vicky Nipper, Coordinator 404-321-0877 Partners in Policymaking 404-320-6663 FAX 1687 Tullie Circle, NE, Suite 110 Atlanta, GA 30329 HAWAII Ms. Clarysse Nunokawa, Coordinator 808-586-8100 Partners in Policymaking 808-586-7543 FAX Developmental Disabilities Planning Council 919 Ala Moana Boulevard, #113 Honolulu, HI 96814 ILLINOIS Ms. Ginny Cooke 312-262-1294 Partners in Policymaking 312-814-7141 FAX (at store nearby 6314 North Lakewood call voice first to say FAX is coming) Chicago, IL 60660 INDIANA Ms. Amy Cook Lurvey 317-262-8632 Partners in Policymaking 317-262-0685 FAX COVOH Foundation 842 N. Meridian Indianapolis, IN 46204 Iowa Ms. Kate Payne, Coordinator 515-278-2502 Partners in Policymaking 515-278-0539 FAX Iowa Protection & Advocacy Services, Inc. 800-779-2502 (Nationwide) 3015 Merle Hay Road, Suite 6 Des Moines, 1A 50310 KENTUCKY Mr. Chris Brown 502-875-5225 The Arc of Kentucky 833 E. Main Frankfort, Kentucky 40601 36 Partners in Policymaking Coordinator's Handbook 1995 LOUISIANA Ms. Cathy Ambrogio 504-649-0663 Voice/FAX 169 Timbers Drive Slidell, LA 70458-1100 MARYLAND Ms. Luciene Pisa 410-379-0400 The Arc of Maryland 410-379-0404 FAX 6810 Deerpath Road, Suite 310 Baltimore, MD 21227 MICHIGAN Mr. Dohn Hoyle 313-662-1256 Washtenaw Assn. for Community Advocacy 313-662-2699 FAX New Center 1100 N. Main, Suite 205 Ann Arbor, Ml 48104 MINNESOTA Ms. Naomi Beachy 218-894-1930 ECSU 5 218-894-3045 FAX 1100 5th Street, NE, Suite 1 Staples, MN 56479 Ms. Karen Tommeraasen 507-836-6148 MN Extension Service 507-836-6019 Murray County Courts Building P. o. Box 57 Slayton, MN 56172 MISSOURI Ms. Vicky Davidson, Family Support Specialist 314-751-8611 Voice/TDD Missouri Developmental Disabilities Council 314-526-2755 FAX P. O. BOX 687 800-500-7878 (Nationwide) 1706 E. Elm Street Jefferson City, MO 65102 MONTANA Ms. Kathy Kelker 406-657-2055 Parents, Let's Unite for Kids (PLUK) 406-657-2061 FAX MS U-Billings SPED Bldg., Room 267 1500 North 30th Street Billings, MT 59101 -O298 Partners in Policymaking Coordinator's Handbook 1995 37 NEBRASKA Ms. Sue Vaughn Williams 402-475-4407 The Arc of Nebraska 402-475-0214 FAX 521 South 14th, Suite 211 Lincoln, NE 68508 NEW HAMPSHIRE Ms. Beth Dixon 603-228-2084 Educational Innovations 603-228-3270 FAX The Concord Center 10 Ferry Street Concord, NH 03301 NEW MEXICO Ms. Amy Haas, Project Director 505-883-4630 Partners in Policymaking 505-883-5564 FAX The Arc of New Mexico 800-358-6493 (NM Only) 3500 Comanche Road NE, Bldg. G Albuquerque, MN 87107 NEW YORK Ms. Shirley Reynolds* 518-432-8233 Partners Project Coordinator 518-432-8238 FAX New York DD Planning Council 518-432-8245 TDD/TTY 155 Washington Avenue, 2nd Floor 800-395-3372 (Nationwide) Albany, NY 12210 * Contact for NY Regional Partners Coordinators NORTH CAROLINA Ms. Megan Soyster 919-783-8898 Easter Seals Society of NC 919-782-5486 FAX 2315 Myron Drive Raleigh, NC 27607-335 - NORTH DAKOTA Mr. Mike Haring 701-223-5349 The Arc of North Dakota 701-223-2435 FAX P. O. BOX 2776 800-767-3566 (Nationwide) 418 E. Rosser Avenue Bismarck, ND 58502 OKLAHOMA Ms. Mary Ann Duncan 918-582-8272 Tulsa Arc 918-582-3628 FAX 1602 South Main, Suite 300 Tulsa, OK 74119 38 Partners in Policymaking Coordinator's Handbook 1995 OREGON Ms. Mary Anne Seaton 503-945-9730 Community Partnerships 503-373-7172 FAX 540 24th Place NE Salem, OR 97301-4517 PENNSYLVANIA Ms. Teresa McKee, Project Coordinator 215-204-1485 (Teresa) Partners in Policymaking 215-204-1356 Voice/TTY (UAP) Temple University Institute on Disabilities 215-204-6336 FAX Ritter Annex (004-00) Philadelphia, PA 19122 RHODE ISLAND Ms. Denise Holmes 401-464-3235 Rhode Island Developmental Disabilities Council 600 New London Avenue Cranston, RI 02920 SOUTH DAKOTA Ms. Colleen Fry 605-224-8294 SD Advocacy Services 605-224-5125 FAX 221 S. Central 800-658-4782 Nationwide Pierre, SD 57501 TENNESSEE Mr. Kevin Wright 615-532-6615 Tennessee DD Council 615-532-6964 FAX Gateway Plaza, 1 lth Floor 710 James Robertson Parkway Nashville, TN 37243-0675 TEXAS Ms. Jopie Smith 512-483-4089 Ms. Susan Murphree 512-483-4095 Texas Planning Council for Dev. Disabilities 512-483-4097 FAX 4900 North Lamar Boulevard 512-483-4099 TDD Austin, TX 78751-2399 800-262-0334 (TX Only) UTAH Ms. Muriel Taylor 801-533-4128 Partners in Policymaking 801-533-5305 FAX Utah Governor's Council for People with Dis. 350 E. 500 South, Suite 201 Salt Lake City, UT 84111 Partners in Policymaking Coordinator's Handbook 1995 39 VIRGINIA Ms. Caroline Mertens 804-786-0016 Partners in Policymaking 804-786-1118 FAX Virginia Board for People with Disabilities P. O. 60X 613 Richmond, VA 23305-0613 WEST VIRGINIA Ms. Jan Lilly-Stewart 304-558-0416 Developmental Disabilities Planning Council 304-558-0941 FAX 1601 Kanawha Boulevard, West Charleston, WV 25312 INTERNATIONAL Lynne Elwell Brookfield Cottage 384 Bury Road Rawterstall Rosserdale Lancashire 664 6E11 England STATES SHOWING AN INTEREST IN PARTNERS IN POLICYMAKING ALASKA Ms. Susan Loudon 907-452-7439 Voice/FAX (Home) 118 Kathryn Avenue 907-479-7940 (Work) Fairbanks, AK 99701 907-474-4052 FAX (Work) 800-770-7940 (AK Only) ARIZONA Ms. Margaret White 602-542-4049 1717 W. Jefferson, Room 112 Phoenix, AZ 85715 IDAHO Ms. Julie Fidor-Davis 208-885-3559 Idaho Center on Developmental Disabilities 208-885-3628 FAX University of Idaho 129 West 3rd MOSCOW, ID 83843 40 Partners in Policymaking Coordinator's Handbook 1995 MASSACHUSETTS Mr. Larry Espling 617-287-7697 MA Transition Initiative 617-287-7664 FAX University of MA/Boston/UAP 100 Morrissey Boulevard Boston, MA 02125-3393 MISSISSIPPI Ms. Royal Walker 601-949-2192 Mississippi UAP University of Southern Mississippi South Station, Box 5163 Hattiesburg, MS 39406 NEW JERSEY Ms. Susan Richmond 609-292-3745 NJ Developmental Disabilities Council 32 West State Street, CN 700 Trenton, NJ 08625-0700 NORTHERN MARIANA ISLANDS Mr. Thomas J. Camacho 011-670-322-3014 Voice/TDD Governor's Developmental Disabilities Council 011-670-322-3015 Voice P. O. Box 2565 011-670-322-4168 FAX Saipan, MP 96950 WISCONSIN Ms. Marilyn Wilson 608-231-2277 2639 Mason Street Madison, WI 53705 PREVIOUS PARTNERS PROGRAMS CONNECTICUT Ms. Mollie Cole 203-667-5350 The Family Center Newington Children's Hospital 181 East Cedar Street Newington, CT 06095 OHIO Ms. Jean Smallwood 513-821-2400 Child Advocacy Center 513-821-2442 FAX 1821 Summit Road #303 Cincinnati, OH 45237 Partners in Policymakmg Coordinator's Handbook 1995 41 WASHINGTON Ms. Cecile Lindquist 206-543-4011 UAP Empowerment Educ. Unit 206-543-8480 FAX University of Washington Seattle, WA 98195 States Without Partners in Policymaking Programs Kansas Maine Nevada Vermont Wyoming Washington, DC Direct General Inquiries Regarding Partners in Policymaking To: Colleen Wieck, Ph.D. (Creator of Partners in Policymaking) Executive Director Minnesota Governor's Planning Council for Developmental Disabilities 300 Centennial Building 658 Cedar Street St. Paul, Minnesota 55155 612-296-9964 612-297-7200 FAX 612-296-9962 TDD Jopie Smith (Texas Partners Coordinator) Director of Training Texas Planning Council on Developmental Disabilities 4900 North Lamar Boulevard Austin, Texas 78751 512-483-4089 512-483-4097 FAX 512-483-4099 TDD Kathie Snow (Texas Partners Graduate and Partners Presenter) 250 Sunnywood Lane Woodland Park, Colorado 80863 719-687-8194 Voice/FAX 42 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Curriculum The Partners curriculum is designed to be comprehensive and sequential: comprehensive so Partners acquire the competencies; sequential so the topics flow and build upon each other. To that end, Coordinators need to follow a somewhat rigid topic order. On the following pages, various topics with accompanying competencies are described. The intent of the format of these pages is to present all the information needed in one area to help Coordinators plan each session. There are ten topic headings. Partners should be scheduled for eight sessions. Some of the topics are stand-alone; that is, one topic will fill the entire weekend. Other topics are combined together. The combination of topics should be logical and the topics should complement each other. History should always be first, followed by Inclusive Education and the adult issues of Independent Living and Supported Employment. Federal and State Legislation will be in the middle of the Partners year. Advocacy and Community Organizing should be taught towards the end of the year. Partners need to learn about WHAT they're advocating and community organizing for before they actually start doing it! The remainder of the subjects fit between the Legislative sessions and graduation. Following are suggested schedules. Some states need to modify this schedule to accommodate their State Legislative weekend. Other than that difference, schedules should closely follow those recommended in program. On the following page are "Schedules A and B."These are sample schedules which reflect a sequential order of the various topics. Also included in this section are copies of agendas from Minnesota and Texas, as well as samples from Missouri and Oregon. Many states are using creative agendas, adding to the overall excellence of a program. In order to achieve the minimum 128 hours of competency-based instruction, each session should run from around noon on Friday until 9 PM that night, and from early morning on Saturday to approximately 3:00-4:00 that afternoon. Friday dinner and Saturday breakfast and lunch should be catered at the hotel, with all Partners in attendance. Friday dinner and Saturday lunch should be located in a different room than the meeting room. Saturday breakfast is best served in the meeting room. This Partners in Policymaking Coordinator's Handbook 1995 43 Curriculum (continued) facilitates an orderly and timely transition to the first speaker Saturday morning. By serving breakfast in the same room late-risers can finish their breakfast even as the speaker begins and you don't have to build in transition time from one room to another. Many Coordinators report success with breakfast buffets. Early mornings can often be a difficult time to have everyone in the room at the same time for a plated meal. With a buffet, Partners can still have a good meal while arriving at different times (within the allotted breakfast time slot). Schedule "A" Session 1 History Session 2 Inclusive Education Session 3 Supported/Competitive Employment Supported/Independent Living Session 4 Federal Legislation Vision Session 5 State Legislation Session 6 Assistive Technology Positioning Behavior Session 7 State Service Systems Family Support Parliamentary Procedure Session 8 Advocacy Community Organizing Using the Media Graduation Schedule "B" Session 1 History Session 2 Inclusive Education Session 3 Service Coordination State Service Systems Family Support Vision Session 4 State Legislation Session 5 Assistive Technology Positioning Behavior Session 6 Supported/Competitive Employment Supported/Independent Living Federal Legislation Session 7 Community Organizing Advocacy Using the Media Session 8 Parliamentary Procedure Graduation 44 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking National Speakers The quality principles of Partners in Policymaking require the use of nationally- recognized presenters to enable Partners participants to acquire the published competencies. Lack of funds; the in-state political climate; and/or the personal wishes of Coordinators, DD Council members, and others are often the justifications for using in-state speakers in place of national speakers. Like other aspects of the Partners quality principles, the benefits of using national speakers have been documented over time via long term studies of Partners graduates and their activities. Partners programs utilizing more local/state speakers than national speakers, are wasting precious dollars and the time and energies of its Partners and presenters. Following are reasons to select national speakers: National speakers, with expertise on specific issues and topics, have a broad perspective and understand the need for new concepts. They are aware of and are versed in the relationships and connections between system changes and policy developments at the national level and the effects at the state and local levels. Since disability policy is often set by Congress, a national perspective about policy requires a national speaker. National speakers can teach best practices and "what's possible." In-state speakers may be able to teach only the status quo and "what's happening now." Partners don't need to learn the status quo and the current status of disability issues in their state. Partners are already living with their state's policies regarding people with disabilities, Many participants could probably teach the in-state speakers about current issues in a given state! Partners need to learn best practices (dream big) and the strategies to achieve systems change (turn the dream into reality). National speakers are in a position to teach these best practices. . Disability issues require state-to-state exchange (cross-fertilization). If only in-state speakers are used, there is no opportunity for Partners to learn about the progress happening in other states and the methods for creating the change in their own state. . Out-of-state speakers can literally say things in-state speakers can't. In most cases, in-state speakers will be constrained by their occupations/ Partners in Policymaking Coordinator's Handbook 1995 45 National Speakers (continued) positions/political connections. Since Partners is about learning to change systems, in-state speakers, who may often be the "gate-keepers," have no incentive to criticize current policy or teach Partners how to change the very systems the in-state speakers may be affiliated with or employed by. o In order to promote Partners graduates to national boards and commissions, there must be opportunities for developing connections and mentorships. Personal relationships between Partners and national speakers can result in the recruitment of Partners to influential positions at the national/federal levels. o To create systems change at the national level, Partners graduates also need to be able to network and organize with Partners across state lines. For them to successfully work together, they need to be on the "same playing field" with similar levels of knowledge and skills in advocacy. Partners who have learned only from in-state speakers will not be on the same level as Partners who have acquired competencies via the national perspective. o National speakers rarely have the opportunity to meet with and get to know a small group of people at the very personal level available at a Partners session. Partners provides the opportunity for the national faculty to learn and receive feedback. Remember that national speakers must be capable of presenting "state- of-the-art" material to Partners. Best practices are not static, fixed, or constant. In today's disability arena, best practices are changing from year to year. For example, in the early 1990s, best practice in housing/living was supported living for adults with disabilities in lieu of institutions and large congregate housing. Today, best practice in this area is "a home of your own. The on/y constant is change. National speakers must have the depth, capacity, expertise, and perspective born out of personal and/or professional years of experience. 46 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Best Practice/State-of-the-Art Q What is meant by "best practice" and "state-of-the-art" in terms of disability issues? A Both of these terms refer to the most up-to-date and the best ways of doing things, from a national perspective. Best practices and state-of-the-art are always evolving! What is best practice today may not be best practice in six months or a year. I Q Why should Partners programs teach best practice and state-of-the-art? A Because Partners training is about leadership for the 21st century. Partners need to know what is possible and how to make it happen. It's absolutely critical that Partners learn how to dream big . . . to dream the dreams they've been told are impossible. Teaching Partners state-of-the-art disability issues enables them to see the big picture, dream the big dream, and learn the strategies for turning the dream into reality. The impact of the individual actions of Partners to achieve the dream of whole life inclusion will effect others, as well. The collective impact of Partners working together will change the face of disability issues as we know them today. The focus of a Partners program should not be on teaching participants what's available in their state and/or how to access services. This information often comes out during the course of a year's training, but it should not be the focus. Most parents and adults with disabilities are already "experts" on what's available, what's not, how to get it, where to go, etc., etc., because they've had to learn on their own, the hard way! It is a waste of time, money, and energy to bring in speakers to teach a primer course on state services, etc. What Partners need to learn is how to change those services, agencies, rules and regulations! Partners don't need to learn about inclusive education from the State Special Ed Director (or facsimile). This is not state-of-the-art! It's the status quo. Partners don't need to learn about supported/competitive employment from the State Voc/Rehab Director. This is not best practice! It's the status quo. Partners in Policymaking Coordinator's Handbook 1995 47 Best Practice/State-of-the-Art (continued) Partners don't need to learn from any speakers who cannot provide a national perspective on the best practice aspects of their subject matter! National speakers are critical factors in teaching best practice state-of-the-art. They are aware of what's happening nationally of what best practices really are. (Always recruit presenters who update their presentations to reflect the most current information.) Partners should not be taught only what's best practice in their own state. . . that information could be years behind the national picture. They need to be taught best practice, period, regardless if it comes from Alaska or Florida or somewhere in-between. Because if it's happening somewhere, it can happen anywhere, and Partners are the ones to make it happen! Following are examples of today's best practices, along with best practices from the past. It's easily to see how quickly things are changing. Partners programs need to always reflect state-of-the-art knowledge in disability issues. Best Practices 1995 Education Full inclusion for every child with a disability. Employment Supported/competitive jobs for real wages, using natural supports. Career vision, not just entry level jobs. Living A home of your own choosing with the supports of your choice. Assistive Technology Anything that enables a person with a disability to have a better, more independent life, from high-tech to no-tech. Voice activated technology, CD- Roms, digitized imagery, e-mail. Best Practices 1990 Education Inclusion for children with disabilities. Employment Supported Work with agency job coaches. Living Some supported living; first state without an institution (NH). Assistive Technology Computers, wheelchairs, adaptive daily living equipment. Best Practices 1985 Education Integration for some children, for part of the day. Employment Demonstration projects in a few states: experimentation with entry level positions. Living ICF-MRS, congregate living. Assistive Technology Wheelchairs, communication devices. 48 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Systems Change Q. What is systems change? A. Modifying, altering, reorganizing, dissolving, and/or creating any systems or policies that serve or affect people with disabilities and families. Systems can beat the local level (schools, service providers, etc.), the county and state levels (case managers, attendant services, state government, etc.), or the federal level (assistance pro- grams, laws, etc.) Q. Why does Partners teach systems change? A. To work toward and achieve a new vision, because historically, the entrenched systems and policies in our society (from local to federal) have not served people with disabilities and families well. Q. Who has traditionally made policy decisions about people with disabilities and their families? A. Bureaucrats and elected officials. Q. Who should make policy decisions about people with disabilities and families? A. People with disabilities and families in partnership with elected and appointed officials. Systems change is the focus of Partners in Policymaking, to enable people with disabilities and families to help make far-reaching changes in the systems that are supposed to serve them. By influencing policy makers at all levels, systems can become more responsive, customer friendly, and consumer driven. Personal change in participants is a by-product of the Partners curriculum. If Partners graduates are competent in personal change skills, but not in systems change skills, the program is not investing its funds wisely. The DD Council (or Partners in Policymaking Coordinator's Handbook 1995 49 Systems Change (continued) other funding organization) is expecting a cadre of disability advocates who are able to assist in the critical efforts facing the disability community today. If a Partners program is not producing graduates competent in systems change, the future of that program is in jeopardy. Funders will be unwilling to continually invest money in a program that does not produce results. Parents of children with disabilities and adults with disabilities can receive training in advocacy and personal change from a variety of sources. Partners in Policymaking is the only training program that is teaching systems change. Partners in Policymaking graduates who are competent in systems change are the leaders of tomorrow. 50 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Skill-Building Activities For the most effective acquisition of the Partners competencies, participants need to be engaged in a variety of learning modes. In some cases, lecture with visual aids is the most appropriate and effective delivery of information. [n other cases, use of skill- building activities are necessary. Whenever appropriate, speakers should combine lecture with participatory activities to enhance the learning process. Role play can be effective when learning about: IEP meetings, IHP meetings, legislative testimony, meeting a public official, case management meetings, parliamentary procedures, contacting media personnel, etc. Demonstration can be effective when learning about: assistive technology and positioning for people with physical disabilities. Small Group Activities can be effective when learning about: how to influence others to use People First Language; brainstorming effective team meetings (IEP, IHP, etc.); preparing for a Person Centered Planning session; preparing for a meeting with education agency personnel, legislators, etc.; brainstorming ways to utilize assistive technology; advocating for people with disabilities; vision-building exercises; and organizing a grass-roots campaign, etc. How many other skill-building activities can you think of to use in your Partners program? 51 Partners in Policymaking Coordinator's Handbook 1995 For Your Notes 52 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking History Purpose The history of people with disabilities in our culture and society affects the present and future. We must know where we've been before we can know where we're going. Key Terms Independent Living Movement Adults with disabilities seeking to achieve autonomy; to break free from institutional and/or custodial care. Independence means taking control of one's life. Self-Advocacy Movement Adults with disabilities speaking for themselves, instead of caregivers speaking for them (People First Movement). Parent Movement Parents seeking basic civil rights, including the right to a public education, for their children with disabilities. People First Language Replacing stereotypical words by putting the person before the disability. \ COMPETENCIES Describe the history of services for, and perceptions of, people with developmental disabilities. Describe the significant contributions of the parent, self-advocate, and independent living movements. Note important ways in which self-advocacy (People First Movement) differs from advocacy for others and why the difference is important. Describe People First Language and why its use is of critical importance. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o This opening weekend is critical in setting the tone for the remainder of the entire program. Partners need a thorough and comprehensive view of history to enable them to put dreams and actions for the future in context. o Reference the Partners Curriculum Highlights Part I for concepts. o Lecture with slides/overheads. o Videos on Ed Roberts, People First, and/or independent Living. o Large/small group exercises on use of People First Language. o Icebreaker for introductions of participants. Partners in Policymaking Coordinator's Handbook 1995 53 History (continued) HOMEWORK OPTIONS o Visit an institutional facility and/or an independent living center. o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. A National Presenters - History of Services and Perceptions Hank Bersani Ed Burke Guy Caruso Phil Ferguson Michael Kendrick Ed Skarnulis Colleen Wieck National Presenters - History of the Parent Movement Elizabeth Boggs Gunnar Dybwad Sue Lehr Lotte Moise Dolores Norley Patty McGill Smith Kathie Snow National Presenters - History of Independent Living Lex Frieden Anne-Marie Hughey Bob Kafka Margaret Nosek Ed Roberts (Videos) Sue Suter Stephanie Thomas National Presenters - History of People First Bernard Carabello Michael Kennedy Irving Martin Connie Martinez Tia Nellis T. J. Monroe Nancy Ward Patrick Worth National Presenters - People First Language Kathie Snow What Is Partners in Policymaking? Jopie Smith Colleen Wieck Kathie Snow Partners Graduates from Other States 54 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Inclusive Education Purpose Parents need to learn how children with disabilities can be successfully educated in regular classrooms at the neighborhood school. Current laws mandate a free public education, but the majority of children with disabilities are still educated in segregated settings. Parents need to learn how to be equal participants in team meetings. Key Terms Inclusion Children with disabilities attending regular classrooms, full-time, with supports, at their neighborhood school. I.EP. Individualized Education Program An annual plan for a child's education, written by a school team, which includes the parents and the student; mandated by IDEA. IDEA Individuals with Disabilities Education Act The federal law which mandates education for children with disabilities (formerly P.L. 94-142). COMPETENCIES Describe the reasons for quality inclusive education. Outline specific strategies to achieve inclusion and quality education. Demonstrate how to be assertive in team meetings. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. . Lecture on best practices and how to achieve inclusion must be done by national speaker (not local or state) with appropriate slides/overheads and hand-outs. Partners in Policymaking Coordinator's Handbook 1995 55 Inclusive Education (continued) o Information on inclusive early intervention and higher education depending on composition of class. o Presentation about and practicing advocacy and assertiveness skills at an IEP meeting. o Roundtable discussion with key individuals from the State Department of Education. HOMEWORK OPTIONS Assessing and/or rewriting IEPs of children of participants. Assessing level of inclusion in local schools. Attend meeting of local Special Education Advisory Committee (SEAC) to discuss inclusion policies of school district. Identify significant persons in your school district: principals, special education director, superintendent, etc.; interview them to discuss inclusion (take out to lunch!). Attend school board meetings; get to know board members and other key officials. Determine if a local SAFE Chapter (Schools Are For Everyone - an action group focusing solely on inclusive education) exists in local community. If so, connect with chapter; if not, start a local chapter with input from national chapter. Reading materials provided by speakers and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting faculty, feel free to contact Colleen, Jopie, or Kathie to verify previous experiences of speaker. A. National Presenters - Inclusive Education Lou Brown Norman Kunc Barbara Buswell Barbara Leroy Mary Falvey Fred Orelove George Flynn Ian Pumpian Alison Ford Mara Sapon Shevin Marsha Forest Jacque Thousand Sharon Freagon Terri Vandercook Michael Giangreco Rich Villa 56 Partners in Policymaking Coordinator's Handbook 1995 Inclusive Education (continued) B. National Presenters- How to be Assertive in Team Meetings Charlotte Des Jardins Norman Kunc June Downing Fred Orelove Mary Falvey Kathie Snow Linda Kjerland Sue Swenson Terri Vandercook C. National Presenters - Testimonials on Inclusion (The following are all Partners graduates.) Lettitia Clay Kathie Snow Candy Sheehan Sue Swenson Others from Nearby States (Contact Partners Coordinators in other states to select appropriate graduates to present testimonials on their children's inclusion. ) D. Selecting Education Roundtable presenters: 1. Roundtable presenters should be representatives of state or local school agencies, representing education from early childhood to transition, due process, etc. As a panel, they briefly explain their roles. They then move to the tables in the meeting room - one educator per table. At a designated time, they move to other tables. By the end of the exercise, each educator has visited with each table. Partners should be prepped on etiquette, protocol, and what issues should be addressed prior to the roundtable, followed by a debriefing after the departure of the roundtable members. 2. Some states have projects that are working on inclusive education issues. Make sure this session creates opportunities for Partners to meet as many state resource people as possible. 3. Most state or local education department employees are not able to present state-of-the-art best practices on inclusion; they are able to be participants in the round-table discussions. 4. Never, ever feature a main speaker who opposes inclusion or who has negative stories to tell. Partners is not about "equal time." It's about best practice and "what's possible." Partners in Policymaking Coordinator's Handbook 1995 57 Partners in Policymaking Supported/Independent Living Supported/Independent Living Family Support Purpose Being included into their own communities and having the sense of belonging is the desire of people with disabilities, just as it's the desire for all Americans. For people with disabilities, supports are often necessary to achieve inclusion. Home ownership, independence, control over one's destiny, and participation in and contribution to one's community are all possible if the supports are in place. Partners need the skills to know how to access and maintain those supports. Key Terms Supported/Independent Living Living in the typical home of one's choice with the supports of one's choice. Natural Supports The same unpaid typical community supports used by people who don't have disabilities: friends, neighbors, co-workers, churches, etc. Family Support funding and services, usually state supported, to enable families to keep children with disabilities in their home environment instead of in institutional or custodial care. Person Centered Planning An informal process in which friends of a person with a disability voluntarily assist the person, over time, to achieve dreams and a better quality of life. (This is not estate planning and has no relationship to government assistance or traditional IHP/team meetings.) COMPETENCIES Outline the basic principles and strategies being used to support people with developmental disabilities in their own homes across the lifespan. Demonstrate an understanding of the need for all individuals to experience changes in lifestyle across the lifespan. Describe the importance of home ownership/control as one of the defining characteristics of adult life in our culture. Understand the concepts of person-centered planning and what supports are necessary to be fully included in the community. Partners in Policymaking Coordinator's Handbook 1995 Supported/Independent Living - Family Support (continued) Demonstrate a knowledge of the service coordination system and/or the state service system and describe what services may be available. Understand the types of supports necessary for creating a positive home environment, such as family support, natural supports, and/or Medicaid waivers. Understand that a flexible, responsive system of supports for the families of children with disabilities is the cornerstone for a true system of community supports for people with developmental disabilities. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES . Reference the Partners Curriculum Highlights Part I for concepts. . These topics can be presented in the same session or they can be divided between two different sessions (supported/Independent living and family support) and combined with other appropriate topics. o Lecture with slides/overheads/videos by national speaker on best practices and "what's possible" in supported/independent living and family support issues. o Small group exercises to teach/practice person centered planning or other whole life planning activity. o Large or small group discussion/exercise on natural supports - whereto find them, how to access them, etc. o Lecture on support systems at the state level for adults and children with disabilities, including family support, Medicaid waivers, etc. o Can use the video, "NEW MAPS Training Video: Shafik's MAP" featuring Shafik Abu-Tahir. The video also includes "Dreaming with Judith Snow." HOMEWORK OPTIONS . Visit both congregate living arrangements (ICF/MR, small group home, large group home) and a "home of your own" location. . Identify natural supports in community. . Identify typical activities, locations, etc., people with disabilities can utilize in their own communities to promote inclusion. . Reading materials provided by instructors and/or Coordinator. Partners in Policymakmg Coordinator's Handbook 1995 59 Supported/Independent Living - Family Support (continued) INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. A National Presenters - Supported/Independent Living Gerald Adams Derrick Dufresne Hank Bersani Jay Klein Dale DiLeo Cathy Ficker Terrill B National Presenters - Person Centered Planning Gerald Adams Jack Pealer Beth Mount Jane Wells C National Presenters - Inclusive Communities: Gerald Adams Connie Lyle O'Brien Derrick Dufresne John O'Brien Judith Snow D Selecting Presenters Within Your State The "best practice" pieces for these topics must be done by national speakers in order to gain the national perspective. In-state speakers can provide perspectives on independent living centers in the state and on service coordination/state service systems, family support, and/orMedicaid waivers. 60 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Supported/Competitive Employment Purpose "What do you do for a living?" is a question with no answer for too many people with disabilities. Real employment for real wage: is a right most Americans take for granted. For people with disabilities, the need is the same: to have a purpose, to achieve, to be connected, and to have an identity. The expectation in the past was that people with disabilities would do best in a sheltered environment. We know now that with the appropriate modifications and supports, people with disabilities can be successful in the job of their choice. Key Terms Supported, Competitive Employment A real job for real pay in one's community. Natural Supports Using the same support system used by people who don't have disabilities, e.g. co-workers, friends, etc., instead of agency job coaches or other paid assistance. COMPETENCY Understand the concepts of supported and/or competitive employment, including the use of natural supports. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. o Lecture with slides/overheads/videos by national speaker on best practices and "what's possible" in employment of people with disabilities. Information on "career vision" for people with disabilities, in lieu of only entry level positions. o Large or small group discussion/exercise on natural supports - whereto find them, how to access them, etc. Partners in Policymaking Coordinator's Handbook 1995 61 Supported/Competitive Employment (continued) HOMEWORK OPTIONS o Visit both sheltered workshop and supported/competitive employment sites. o Develop a "career vision," utilizing natural supports. o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. A. National Presenters - Supported Employment Mike Callahan Jan Nisbet Dale DiLeo Tom Poweil Cary Griffin Ian Pumpian Dave Mank Paul Wehman B. Selecting Presenters Within Your State There are probably many resource people within your state who are active in supported/competitive employment. The "best practice" piece for this topic must be done by a national speaker in order to gain the national perspective. An in-state presenter could supplement the presentation by the national speaker. 62 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking State Legislation Purpose In order to influence policymakers at the state level, Partners need to be competent in and comfortable with the state legislative process. Partners all across the country have influenced legislation with their personal testimonies. This is a powerful avenue for systems change. Only at Partners do individuals have the opportunity to actually practice giving testimony before real legislators and/or staff members. When the time comes for the real thing, Partners are ready. COMPETENCIES Describe how a bill becomes a law at the state level. Draft and deliver testimony for legislative hearings. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o This is a stand-alone topic for one entire weekend. Lecture with slides/overheads on the state legislative process by State Legislator or legislative aide/staff. o Tour of the State Capitol to become familiar with building. o Mock hearing on real issue(s) at the Capitol to allow every Partner to deliver testimony in realistic fashion. - Invite experienced lobbyists (or other trainers experienced in public policy) to serve as coaches to assist and support the development of testimony. - Invite Legislators (and/or staff) as early as possible to conduct mock hearings and to provide feedback to Partners on their testimonies. o Brief presentation by representative of Governor's office about applying for governor-appointed positions. o Provide as many handouts as are available, including state legislative directory. Have Partners sign up for Committee schedules, weekly summaries of legislative activities, and other pertinent materials. Partners in Policymaking Coordinator's Handbook 1995 63 State Legislation (continued) HOMEWORK OPTIONS o Shadow a state legislator for a day. o Attend legislative hearings on any subject to gain familiarity with process. o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. A. National Presenters - State Legislative Issues Allan Bergman Mary Jo Magruder Hank Bersani Carmen Quesada Denise Brady Carol Risley Dohn Hoyle Cathy Ficker Terrill Colleen Wieck B. Selecting presenters within your state, consider contacting Governor's Office Legislators Legislative staff Disability lobbyists Lobbyists This session can be done with in-state presenters only if the most appropriate, experienced speakers are selected. This can be a once-in-a-lifetime opportunity for Partners to really get to know legislators and their staffs. 64 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Federal Legislation and Vision Purpose Becoming competent in federal legislative issues and vision-building has never been more critical for Partners. Disability issues are at a crossroads within the present congressional milieu. Partners must know how and when to influence their legislators and other policymakers at the federal level. COMPETENCIES Describe how a bill becomes a law at the federal level. Identify critical federal issues and the process by which one can personally address concerns. Demonstrate how to meet a public official and express views and concerns. Describe a vision for the year 2010 and beyond for people with disabilities. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. o These two topics can be presented together, or can be split up and combined with other appropriate topics. . Lecture with slides/overheads by national speaker to demonstrate the legislative processes within the federal government. . Update on current and future events/hot topics at federal level relating to disability issues and funding. o Invite Congressional staff to attend this session in order to role play "meeting a public official" and to learn protocol and etiquette. o Small group activity to simulate a group visit to federal legislator; have Congressional staff critique efforts. . Vision building is a participatory small group exercise involving a "high school reunion" and an opportunity to build a collective vision for the year 2010 or beyond. Partners in Policymaking Coordinator's Handbook 1995 65 Federal Legislation and Vision (continued) o Vision building - learning to "dream big" - is critical for Partners to learn before they can create change. o The Joel Barker video, The Power of Vision, can be a helpful tool. HOMEWORK OPTIONS o Call or visit local office of U.S. Senator or Representative. o Letter writing to Senators and/or Representatives in Washington about current issue (if appropriate) or simply to inform them of the issues facing people with disabilities in the area. o Volunteer to work on political campaign. o Develop relationship with local staff person of Senator or Representative. o Offer to provide on-going information about disability issues to Congress member. o Obtain Congressional directory. o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. A National Presenters - Federal Issues and Meeting a Public Official Allan Bergman Curt Decker Hank Bersani Paul Marchand Ed Burke Celane McWhorter Christopher Button (Ms.) Larry Searcy Bob Williams B National Presenters - Vision Building Allan Bergman Fran Smith Hank Bersani Sue Swenson Ginny Cooke Colleen Wieck Federal Congressional Staff Enlist the help of Congressional staff members in your area. Also, seek out disability lobbyists and others who work at the federal level. Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Assistive Technology - Positioning Purpose Assistive technology and ]proper positioning :can, quite literally, make the difference between interdependence vs. dependence for people with disabilities. Key Terms Assistive Technology Device Any item, equipment, or system that improves the capabilities of people with disabilities. High tech, Low Tech, No Tech The level of sophistication of an assistive technology device. Positioning For persons with physical disabilities, the correct seating systems, to include wheelchairs and other positioning devices, to maintain optimum health, interdependence, and productivity. COMPETENCIES Understand the reasons for and the importance of proper positioning techniques for people with disabilities. Describe examples of assistive technologies for people with disabilities. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. Lecture with slides, overheads, videos, and demonstrations to illustrate the critical "why" and "how" of technology and positioning. Videos are available on technology from Apple Computer, President' Committee on Employment of People with Disabilities, Americans with Disabilities Act regional resource centers, as well as from other sources. o Presentation/information on local/state assistive technology centers and/or services available. Small group exercises on how many typical products can be utilized as assistive technology. Partners in Policymaking Coordinator's Handbook 1995 67 Technology (continued) HOMEWORK OPTIONS o Visit a technology center or a rehab technology laboratory. o Acquire retail catalogs of assistive devices and aids. o Visit electronics store to learn more about typical products available. o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting faculty, feel free to contact Colleen, Jopie, or Kathie to verify previous experiences of speaker. A National Presenters - Positioning Joan Bergman Karen Green-McGowan Pip Campbell Andrea Jensen Jessica Presperin B National Presenters - Technology Richard Dodds Robert Stack Also contact the following national organizations on technology: RESNA ABLENET 1101 Connecticut Avenue, NW 1081 Tenth Avenue, SE Suite 700 Minneapolis, MN 55414 Washington, DC 20036 612-379-0956 Selecting Presenters Within Your State: Invite your Technology Council/Assistive Technology Center to discuss how to access technology resources within your state. Find out if your state has a computer lending program, a mobile vehicle on technology, or other services on assistive technology. Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking. Parliamentary Procedure Purpose Partners attend many meetings, both individually, on behalf of others, and as members of committees and boards. Many may feel overwhelmed and unprepared to deal with the professionals" and others attending such meetings. Learning official parliamentary procedure provides Partners with the skills and self-confidence they need to influence the many meetings they attend. Key Terms Parliamentary Procedure The official protocol used in board meetings. COMPETENCY Demonstrate a knowledge of parliamentary procedure and appropriate methods for running a meeting. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. o Lecture providing "how-to" information on boards, meetings, and parliamentary procedure, with small group exercises to help participants practice skills for planning and conducting successful meetings. o The idea of studying parliamentary procedure is not appealing to most people. However, it's a very important topic to enable Partners to influence their futures and the organizations they're affiliated with. Happily, the speakers listed here present an entertaining, engaging, and educational approach to this topic. Most Partners respond with very positive evaluations. Partners in Policymaking Coordinator's Handbook 1995 69 Parliamentary Procedure (continued) HOMEWORK OPTIONS o Reading materials from presenters. o Analyze the most recent or the next meeting you attend(ed) for its use of appropriate parliamentary procedure. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. National Presenters - Boards and Parliamentary Procedure Susan Scribner Don Sikkink 70 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Advocacy, Community Organizing; Media - Purpose Partners will have learned about the best practices in disability issues relating to education, community living, and legislative issues. Now they need to learn how to advocate for systems change in these areas, to include organizing their communities to action and using the media. Key Terms Community Organizing Mobilizing groups and/or individuals in a community around a particular issue to create change. COMPETENCIES Demonstrate successful techniques for advocating for services to meet the needs of individuals with disabilities and families Identify strategies for beginning and sustaining grass roots level organizing. Identify how to use the media to effectively promote issues. PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. o These topics should be taught toward the end of the Partners year. Partners need to have learned all the basics on inclusion, community living, etc., before they learn about being activists on those issues. o These topics can be grouped together in one session, or they can be split up and combined with complementary topics. To teach community organizing, a national presenter and small group exercises are a must. Select an issue that's discrete, small, and winnable. Have the groups plan a full campaign that includes a variety of tactics such as using the media, organizing meetings, and direct confrontations. o For advocacy, representatives of state advocacy organizations can present a round-table discussion on their advocacy organizations. 71 Partners in Policymaking Coordinator's Handbook 1995 Advocacy, Community Organizing, and Media (continued) o Small group exercises can help Partners learn techniques of successful advocacy. o Have presenters bring literature from their organizations for all Partners. o A member of the local media can present information on how to gain press coverage of disability issues. HOMEWORK OPTIONS o Join a coalition which deals with a social justice issue. Pick a local project in your home community that's winnable. Build alliances with others. o Study personalities in local media to see who covers, or is interested in, disability issues. Make contact - take a reporter to lunch. Offer to be a source of disability information to media personnel. o Setup a telephone tree to use when advocating for specific issues, including legislative/policy decisions at local, state, national levels. o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. A National Presenters - Community Organizing Don Barr Bob Kafka Dohn Hoyle Carmen Quesada Vivian Jenkins-Nelson Shafik Abu-Tahir B National Presenters - Working with the Media Kathie Snow Sue Swenson C Selecting Presenters Within Your State Invite leaders of local/regional/state advocacy organizations. Search out community organizers associated with churches, poverty groups, unions, or social justice organizations. Invite local media personnel who can teach media relations. 72 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Behavior Purpose Behavior is often a barrier to inclusion for some persons with disabilities. This issue can be resolved when behavior is viewed as a form of communication and when methods/supports are used that lessen or prevent "inappropriate" behaviors. COMPETENCY Describe the importance of positive approaches to behavior change PRESENTATION STYLE & SKILL-BUILDING ACTIVITIES o Reference the Partners Curriculum Highlights Part I for concepts. o Behavior should be combined with a complementary topic. o Lecture with slides/overheads/videos by national speaker on best practices and "what's possible" in positive behavior approaches. o Role play and/or small group exercises to demonstrate methods of interactions. HOMEWORK OPTIONS o Reading materials provided by instructors and/or Coordinator. INSTRUCTORS Presenters are listed in alphabetical order. Always have a back-up presenter. Before selecting speakers, feel free to call Colleen, Jopie, or Kathie to verify the previous experiences of speakers. National Presenters - Positive Approaches to Behavior Change Anne Donnellan Herb Lovett Chris Heimerl David Pitonyak Wade Hitzing Joe Schlappacasse Partners in Policymaking Coordinator's Handbook 1995 73 Partners in Policymaking Other Possible Topics Facilitated Communication Some people with disabilities have difficulty communicating verbally and may be unable to independently utilize a keyboard for communication. For many, Facilitated Communication is a successful method of communication. Facilitated Communication involves a person acting as a facilitator providing manual support to the hands, arms, or shoulders of a person with a disability to assist with typing on a keyboard. National Presenters: Anne Donnellan, Sue Lehr, Mary Schuh, Meyer Shevin State/local presenters who have been successful in this area may also be appropriate. Letting Go For many parents of children with disabilities, letting go and allowing their child to be independent, take risks, and experience both success and failure is a very difficult process. Experienced parents can often help. National Presenter: Betty Pendler State/local presenters in your area may also be appropriate. Sexuality The rites of passage into sexually mature adults is difficult for most. For people with disabilities, there can be additional challenges. Parents of children with disabilities and adults with disabilities all have to deal with this issue at one time or another. Open, honest discussion can provide some of the answers to potential dilemmas. National Presenter: Betty Pendler State/local presenters with expertise in this area may also be appropriate. The local Planned Parenthood office may provide leads. 74 Partners in Policymaking Coordinator's Handbook 1995 Partners in Policymaking Graduation Graduation is a time of include a ceremony to You made it! Your Partners made it! How do you celebrate? Graduation is a time of reflection and renewal. The eighth and final session will honor Partners graduates and send them on their way. The scheduled curriculum needs to be covered on Friday afternoon and evening and Saturday morning. The graduation ceremonies can begin with Saturday's lunch. If possible, have a representative from the Governor's office and/or a state legislator present to give a short congratulatory message to the Partners. Council members as well as a few other dignitaries who have a relationship to the Council or other disability organizations should be invited to the Saturday luncheon. Remember to keep the focus on the graduates, not on invited guests. After lunch, with all Partners and guests in attendance, each Partner can take a few minutes to describe what the program has meant to him/her and to briefly outline what they plan to do with their new skills. For most, graduation is a very emotional time. Some programs allow Partners to invite family members to the luncheon and