Communicating and Connecting with Learners Who Are Deafblind

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Award dates: October 1, 1999 - September 30, 2003. Opinions expressed herein are those of the authors and do not necessarily represent the position of the U.S. Department of Education, Massachusetts Department of Education, or Perkins School for the Blind. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C i Tribute This document is a tribute to the strength, wisdom and courage of all learners who are deafblind, and to their families, friends, teachers and other team members, who have committed to the awesome challenge of creating meaningful moments of communication connections. Each time the team understands the complex message conveyed by the learner who is deafblind, they develop an increased understanding of the learner's unique communication needs, and, effective communication is established. We are all together on the journey of becoming effective communication partners. There are countless moments in each day filled with natural learning experiences and opportunities for communication. Discover them! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C ii Acknowledgements This document is the culmination of a four-year Match Maker Project. The Project began with a single idea of reducing the amount of time it takes new team members to get to know the learner who is deafblind, potentially increasing the number of communication partners for the learner. We believe that designing this tool has united team member 9s focus toward achievable goals. First, we thank the learners, their parents, brothers and sisters, and extended family members for trusting us with their stories. They continue to be our teachers! They provided us with insight and direction in the development of the communication books and videos addressing the unique needs of their children. We are most grateful. Thank you! Second, we thank the following local school districts for their contribution to the project's endeavors: Plymouth, Hampden, Wellesley, Lawrence/Methuen, Worcester and Chelsea/Beverly. Specifically, we want to thank the following personnel who were especially helpful in their implementation of the project's procedures and their commitment to effective communication partnerships and practices for their students: Kathy Disa, Ami Lieberman, Corally Littrell, Kristin St. Marie, Kim Stegbuchner, Jeff Sullivan, Deb Tobias, Val Wilk, Lynn Chiastowski, Donna Ferguson, Brendan Foley, Gayle Francis, Dr.John Galinski, Rod Hemingway, Lisa Jarpole, Maggie Lawler, Cate Miheliandaki, Jane Rosen, Kathy Russo, Cynthia Turncliff, John Bierfeldt, Carol Dempsey, Alice Gabriel, Chris Majesky, Seon-Jo Park, Kathie Alearn, Stanley Barron, Pat Bennett, Carrie Carlson, Sue Connors, Jeanne Duffy, Cesar Gonzalez, Mary Beth Henderson, Jovanni Martinez, Marka O 9Connell, Bernie Pierce, Janet Reyes, Marta Sanabria-Ortiz, Maggie Solis, Carolyn Timbie, Alexandra Urena, Fatima Vidal, Deb Bostwick, Jack Burke, Barbara Gravelle, Carolyn Hannon, Cathy Mayo, Larry Melander, Lori Wilmot, Gretchen Bravacos, Linda Groszyk, Barbara Hodges, Dayna Hutchins, Lori Janiuk, Rusty Johnson, Arthur Karelas, Carrie Larsen, Dawn Whyte, and Susan Weiner. Third, we extend our heartfelt thanks to the team of professionals who provided ongoing guidance and immeasurable support, a calming spirit, la joie de vivre, esprit de corps and expertise in completion of this project: Gail Barbera for creating the initial portfolio templates, John Pelrine for collecting hours of video footage, Madeleine Schulman for collecting additional video footage and editing all of the footage into individual student videos and a compilation video, Shaun Skeya for updating and revising portfolios and authoring the cMaking the Portfolio d section of this manual. And to an extraordinary volunteer, Carla Lynton, who gave her own time, most generously, most enthusiastically, in translating multiple portfolio documents and articles into Spanish for families, also acting as a Spanish speaking interpreter for the Project connecting us with one of the learners parents. We would also like to thank the team of professionals at the Massachusetts Department of Education, Department of Special Education Planning and Policy who supported our ideas and provided on-going guidance: Madeline Levine, Assistant State Director of Special Education and the Assistant Director of the Department of Special Education Planning and Policy; Katherine Honey, Educational Specialist; and Jody Williams, Educational Specialist. And to Marcia Mittnacht, Massachusetts, State Director of Special Education, Director of Special Education Planning and Policy, we thank you. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C iii In addition, we are especially indebted to our colleagues in the Hilton Perkins Program: Betsy McGinnity, Project Administrator, for brainstorming final document details by phone; Marianne Riggio, Educational Consultant, Publications and National Technical Assistant, for reading, commenting and referring us to Valerie Sensabaugh who completed the initial edits of the document; Lisa A. Jacobs, Information Specialist for DBLINK for reading and commenting upon portions of the document; and to Steven Davies, Parent Educator and Information Specialist for DBLINK for proofreading and commenting on our final draft. We also are indebted to the NEC Family Specialists for their wholehearted enthusiasm and support of this Project: Delma Boyce (MA) for sharing your wonderful stories about deafblind communication interactions; Andrea Garewski (CT) for viewing and recommending changes in the initial Project video; Glenda Longe (ME) for writing an article on the benefit and use of the Portfolios for learner 9s who are deafblind; Djenne Morris (MA) for sharing your experience of using a video during your son 9s IEP visually demonstrating progress on his objectives; Jeanette Peracchio (CT) for viewing and recommending changes in the initial Project video; and Ann Dillon (NH) for bringing the Portfolios to New Hampshire. The NEC Family Specialists are a gracious group of people: accessible, helpful and engaging. And we also are especially grateful to the members of our NEC Multistate Team: Charlotte Cushman (ME), for reading and commenting upon portions of the document and the Project video, and for using these materials in trainings, Evelyn Kelso (NH) for bringing the Portfolios to New Hampshire and using the Project video for trainings, Kathy Morgan (CT) and Karen Olson (CT) for encouraging us to complete the document. You continue to inspire us with your focused commitment to quality communication interactions for learners who are deafblind. A special thank you to Delma Boyce, NEC Family Specialist, and Cheryl Harvey, NEC Project Assistant for your humor, laughter and joy in the final days in birthing this document. And to you the reader, it is our hope that you will use these materials to create Communication Portfolios for your learners, establishing connection with communication partners now and in the future. Best of luck in your endeavors! And in memory of Jonathan Rosa (1983 3 2005) A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C iv Table of Contents Tributei Acknowledgements ii I. Purpose and Background1 II. Unique Communication Needs of Learners Who Are Deafblind and Their Partners1 III. Developing Communication Portfolios2 Using The Learner 9s Words, Photographs and Videos3 Case Study Photographs and Videos3 IV. Families 9 Perspectives4 Families and Trust4 Medical Issues5 Sharing the Portfolios5 Families as Advocates for Quality Programs5 Updating the Portfolios6 Summary: Families7 V. Socialization7 Portfolios Increase Understanding in Peers 7 Proximity8 Manners9 Modeling Interactive Techniques9 Spontaneity10 Community Experiences10 Summary: Socialization11 VI. Effective Educational Practices13 Real-Life Learning: Natural Learning14 Conversations15 Calendars/Schedules17 VII. Vision Adaptations 22 VIII. Auditory Adaptations 27 IX. Motor Adaptations 32 Summary: Adaptations37 X. Systems Change38 Substantial Need Agreed Upon by the Partners38 Needs of Teams39 Partners Share Resources39 Using Technical Assistance Strategies for Both Students and Systems 40 Technical Assistance Strategies Based on Research40 Partners Monitor Progress40 A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C v System Change at the School Level 40 The Impact of the Project on Building Level Personnel 41 Team Requests 41 Building Level Inservices 42 Systems Change at the District Level 42 Evaluation Needs of the Learner 42 Systems Change at the Agency Level 43 Systems Change at the State Level 43 Summary: Systems Change 44 XI. Conclusion and Thinking About the Future 44 References 46 Additional References 47 Appendices 51 Appendix A 52 Checklist of Portfolio Components- Picture This! 53 Cover (Illustration) 56 Jonathan 9s Biopoem (Illustration)57 Biopoem Form 58 Biopoem Directions 59 Family Contribution List 60 Family Contribution List 3 Sample Response 61 Family Contribution List (Critical Things&) (Illustration) 62 Family Contribution List (Hopes) (Illustration) 63 Dimensions of Communication 3 Recording Booklet 64 Score Sheet 78 Descriptive Profile 79 Descriptive Portfolio (Illustration) 81 Learner 9s Likes and Dislikes (Illustration) 82 Communication Inventory - Learner 9s Interactive Interactions 83 Communication Inventory - Symbolic 84 Process and Communication Style 85 Communication Tools 3 (Illustration) 86 Identify and Recommend Teaching Strategies (Illustration) 87 Dreams MAP 88 Interagency Agreement Form 89 NEC Consultation Contact Form 90 Appendix B Making the Portfolio 91 Cover 93 1. Introduction 94 2. Points to Remember 95 3. Access to Tools and Techniques 96 4. Content and Design: Working Together 96 5. The Basics 97 A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C vi 6. Creating Text 98 7. Creating Photographs 99 8. Putting the Two Together 101 9. Conclusions 102 Appendix C103 Materials and Resources Shared with Teams105 Translating Materials and costs109 Agencies110 Websites111 A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 1 I. Purpose and Background The purpose of the Massachusetts Match Maker Project was to enhance the communication competence of seven learners who were registered as deafblind with the New England Center Deafblind Project by giving their communication partners in-depth information about each of the learner 9s communication abilities, needs, and effective ways to communicate with the learner. This resource provides a background of the project and details the process of gaining and sharing information about the seven learners who were deafblind through the use of Communication Portfolios. Finally, this resource shares what we learned through this process--highlighting what we learned from families, what we learned about socialization between the learners who were deafblind and others, and what we learned about effective practices and systems change. In Massachusetts, approximately sixty percent of school-age learners who are deafblind are educated in their local schools. Their teachers and other team members most often have no training or experience with learners who are deafblind, as deafblindness is a low incidence disability. The lack of trained personnel is also a critical national challenge. (McLetchie, B. A. B.; MacFarland, S. Z. C., 1995: Giangreco, M. F.; Edelman, S. W.; Luiselli, T. E.; MacFarland, S. Z. C. 1997). In 1999, the United States Office of Special Education and Rehabilitation Services (OSERS) offered federally funded Deafblind Projects an opportunity to apply for Match Maker Grants, creating a fusion between state and federal dollars (State Improvement Grant) and federally funded deafblind projects. The New England Center Deafblind Project saw this as an opportunity to create a model for developing the communication competence and others working with and interacting with children and youth who are deafblind. The New England Center Deafblind Project collaborated with the Massachusetts Department of Education combining resources and expertise with the collaboration of six Local Education Agencies. This four year Grant was the first formal collaboration between the New England Center Deafblind Project and the Massachusetts Department of Education on behalf of learners who are deafblind. II. Unique Communication Needs of Learners Who Are Deafblind and Their Partners Communication connects all human beings with one another. Each person who interacts with the learner who is deafblind is a communication partner (family members, peers, teachers and others). Although learners who are deafblind are all different, they share difficulty in communicating with others. Communication is the greatest challenge in working with learners who are deafblind. Many learners who are deafblind do not speak, and some do not have formal language. They may use objects, body movements, facial expressions, and other non-traditional forms of communication; they may develop language and use sign language; a few may understand and use speech. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 2 Without the ability to communicate effectively with learners who are deafblind, it is impossible to assess their abilities, to include them in classrooms, and to provide them access to the regular curriculum. Learners who are deafblind are placed in many regular education classrooms, but they are often at risk for not being well taught or included. Learners who are deafblind often have difficulty making friends with classmates because peers do not understand their idiosyncratic or non-traditional ways of communicating. It takes time to learn how to be an effective communication partner. The learner who is deafblind waits. She waits for new communication partners to learn her ways of communication and her interests. How frustrating it must be for the learner and her communication partners! By the time communication partners establish an understanding of the learner 9s communication abilities, it is the end of the school year. Then a transition occurs to a new class in September, and the learner who is deafblind begins waiting all over again. Unfortunately, this cycle repeats itself over and over and over again. This serious problem was the catalyst for the development of Communication Portfolios. The use of the Portfolios reduced the amount of time required for new team members to get to know the learners - a major outcome of this project. For example, during spring break two of the learners transitioned to new programs. When new team members used the Portfolios, they were able to implement the learners 9 programs within two weeks. Previously, annual school transitions have required nine months for teams to implement IEP goals and objectives and to communicate effectively with the learners. Becoming an effective communication partner requires the ability to establish a trusting relationship with the learner. Communication partners must have an in- depth understanding of the learner 9s communication abilities, needs and their interests. Both the active involvement of families and other team members and on-going team assessment were needed in developing Communication Portfolios. Through our work on this project, we gained information about the learners 9 communication strengths, important people in their lives, important community experiences, and their likes and dislikes. The Portfolios helped communication partners to gain understanding and enhance their own communication abilities with the learners. III. Developing Communication Portfolios The seven learners who were deafblind were identified by the New England Center Deafblind Project 9s Registry. The following criteria were considered in the selection process: issues of cultural diversity, gender, age, educational settings (rural/urban) and six geographic areas of Massachusetts. The age range was 3 to 22 years old. One learner was turning three-years-old. Five learners were school age, and one learner was preparing for transition to adult services. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 3 The New England Center contacted families who met the criteria. Families 9 willingness to participate in the project was the starting point. The deafblind specialist met with the families in their homes. She captured the family 9s hopes and dreams for their child by using biopoems and interviews/conversations. The interviews respected and adapted to each family 9s values, culture, and traditions. The results of the biopoems and the interviews formed the foundation for developing the Communication Portfolios. A biopoem is a single page document highlighting the learner 9s personality, expressing what he feels, needs, and loves (See Appendix A). The Communication Portfolio is a tool consisting of photographs, words, and a video that captures the learner 9s communication abilities and needs. The Communication Portfolio for each student addressed the following majors areas: A visual and verbal description of the learner 9s communication abilities across different environments (school, home, and community). Important people or communication partners in the learner 9s life. The forms, reasons, and meanings of the learner 9s communication in video segments and photographs with accompanying text. A holistic view of the learner, including communication abilities, learning style, family culture, vision and hearing abilities. The modifications and adaptations necessary for the learner to access people and things in the environment. The Portfolios are ever evolving, as all human beings change over time. Family members were the primary source of information and were involved in creating the Portfolios. We found that the Portfolios created a way to share information among team members and other communication partners. The Portfolio gave the learners 9 communication partners in-depth information about their abilities and needs. (See Appendix B). Using the Learner 9s Words, Photographs, and Videos Each Portfolio was written in words the learner might use if he were speaking to the reader. Pairing the learner 9s words with a photo might sound like this: "Hi, I 9m Michael! I love to be with people. Touch my hand so that I know you are there. Let 9s read this book to learn about me. Tell me who you are. d Case Study Photographs and Videos Individual photographs and video footage were taken in a variety of environments. The videoclips were compiled resulting in about a fifteen-minute video for each learner. Communication partners were encouraged to continually photograph, make videos, and use the learner 9s words to update the Portfolio, chronologically marking and organizing it to document the learner 9s progress. One of the learners updated his own Portfolio. He was so proud of having a book A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 4 and video all about him that he created new pages with more photographs of himself engaged in a variety of activities. IV. Families 9 Perspectives As each learner who is deafblind is unique, so was each family in this Project. One of the staff members worked on the project full time, so we had the rare opportunity of frequent contact with the families. This took place in their homes and at their children 9s schools at least once a month, and weekly by phone, e- mail or fax. We used a person-centered planning model to capture each family 9s dreams and hopes for their child 9s future. Person-Centered Planning is a futures planning process involving everyone connected with the learner. Together, the teams created individual visual and word maps of the learners 9 past, present, and projected futures. They also gathered information about the learners 9 favorite and non-favorite items (likes and dislikes), and they determined what worked and what did not work (Mount, B., 1992: Grisham-Brown, J., 1999: Mar, H.; Sall, N.,1999: Luiselli, T.E.; DeCaluwe, S.; Jacobs, L.A.,1995). Each family set goals and expressed their hopes and dreams for their child 9s future. Common goals shared among the families were for their children to develop self-esteem, to have competent teachers and a meaningful curriculum, and to have friends. Family members were concerned about isolation and the quality of their children 9s programs. All families were worried about the quality of their child 9s IEP. Parents appreciated the Portfolios and were concerned that they might not be continued when the project was completed. At the end of the project, the parents expressed more confidence in working with school personnel to ask for changes (i.e., cMy child needs an assistant who can sign. d cCan we arrange monthly team meetings? d). Families andTrust Establishing trust is the key component in developing a relationship and communication with the learner who is deafblind. The same holds true for their families. Establishing trust with the family and the learner was the heart and soul of this project. The six families, who decided to participate in this project, taught us a great deal about trust. They gave us permission to film, visit, and review records. They trusted us to be in their lives and the lives of their children for two years. They trusted us to look at the ways their children communicated and to capture their communication abilities through videos, pictures, and words. Parents entrusted us with valuable information about themselves and their families. Families often reminded us not to use jargon. Trust was built on shared knowledge. For example, we encouraged a mother to begin using object symbols with her son to support memory, anticipation, and language development. She was not interested in or did not value object communication. The mother did not A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 5 understand the term cobject symbols; d but was familiar with math manipulatives, since her son used them to support his need for touch in learning math concepts. When object symbols were presented and described as language/communication manipulatives, the mother understood and embraced use as part of her son 9s communication system. Parents appreciated reviewing the photographs and videos on an on-going basis. They told us where they agreed, disagreed, or had questions. The deafblind specialist connected with the families every step of the way, seeking their input. Medical Issues We learned to stay sensitive to medical issues. Two families whose children had severe medical needs shared how medical concerns had an impact on their educational programs and on the family 9s ability to dream. cWe can dream for the moment. Sometimes life is lived in moments only! d Sharing the Portfolios We discovered that parents shared the Portfolios with other family members, church groups, and peers. A sister said, cThis Portfolio helps my brother be more independent. Someone can look at this and understand how to communicate with my brother at his own level. d One family translated their son 9s Portfolio into Spanish so the grandmother could understand what her grandson was learning in school and how he communicated. The student took great delight and pride in sharing the Portfolio with his grandmother. A brother was motivated to learn sign language when he saw his brother 9s video. He had no idea that his brother used sign language because he never used it at home, as no one in his family could sign. Now family members are learning signs. A mother shared the Portfolio with her son 9s classmates when he transitioned to a new class. His peers welcomed him and were eager to interact. Families as Advocates for Quality Programs Through the Portfolio process, parents gained knowledge and confidence in advocating for quality programs. At the beginning of the project, parents measured the quality of their child 9s program based on whether the child was happy at school. Through the process of developing the Portfolios, four out of six A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 6 parents told the deafblind specialist that their children were more capable than they previously believed. Parents worried about the quality of their children 9s programs to meet their children 9s unique communication needs. They asked for and expected more from their children and others. They learned they could approach administrators to request what their children needed. The following highlights are examples of parent advocacy: One learner needed an assistant teacher who could sign. Because of parent advocacy, an assistant with sign language abilities was hired. One family asked that their son be seated for most of the school day, instead of lying on a mat. Their big dream was for their son to have friends, and they realized that being seated was essential for quality interactions with peers. Most parents expressed concern about the IEP process: setting goals and writing the goals to meet new state standards. They wanted goals that were functional for their children at home and in the future. They wanted IEPs to have communication as the primary goal. One parent was proactive in seeking specific information on the necessary components to build a quality program for her son. She sought academic achievement, assessments, and equipment adaptations that would allow her son access to all the academic materials available to his peers. One family requested IEP update meetings every six weeks to give team members the opportunity to meet, receive training if necessary, and keep each other connected on the child 9s progress. This ongoing collaboration, and the creative discussion of what was working and what was not working, resulted in several positive changes, including the implementation of new activities, embedding therapies within routines, new equipment, and improvement in the team members 9 skills. At the beginning of this project one of the seven learners received instruction from a teacher trained in deafblindness. Parents did not realize the importance of a highly qualified teacher for their son or daughter. At the end of the project, five learners received direct classroom instruction from teachers trained in deafblindness. Updating the Portfolios The only way to assure longevity of the Portfolio is if families take responsibility for completing and updating it. Educational teams must support families in this process by photographing and videotaping the learner 9s activities in school. It would have been helpful if at the beginning of this project, we had anticipated A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 7 and shared with parents that the responsibility for maintaining the Portfolio would rest on their shoulders. In any case, parents felt confident to continue to develop the Portfolio and share it with new team members. (Appendix B - Checklist). Summary: Families This section only begins to highlight the enormous amount of information and the contribution we received from families while developing the Communication Portfolios. Families and learners who are deafblind continue to be our teachers. Creation of the Portfolios led to higher expectations for each of the seven learners. Parents recognized the value of the Portfolio for training staff, for providing assessment information. Sharing the Portfolios with classmates, family members, and members of the community led to greater understanding of their children. V. Socialization Portfolios Increase Understanding in Peers Most families want their children to have friends, and communication is the key to developing social relationships. Natural interactions are often difficult for learners who are deafblind, because of their vision and hearing losses. Vision and hearing are the major avenues for connecting with others and establishing relationships. It is critical for peers to understand the learner 9s forms of communication and the functions or reasons the learner communicates. For example, one learner lifted his head and smiled to mean, cI want attention. d Peers who are sighted and hearing need to be encouraged to use the forms that the learner uses to communicate and to interpret the meaning of what the learner is trying to say. Portfolios were invaluable in facilitating peer interaction. Classmates were eager to interact with the learner who was deafblind once they understood how the learner received information. Strategies used by peers to interact with the learner included touch, close proximity, auditory trainers, adapted table materials, sign language, pictures, and textured materials. The Portfolio also helped peers understand why the learner was outside of the classroom for medical related issues and/or therapies. During a class meeting, a parent talked about her son using his Portfolio. She showed his classmates the pictures and explained about his physical and medical conditions. That evening one of his classmates told his entire family about the friend who was in his classroom and what he did. He told his family how his classmate communicated, how he ate, why he left the room for some activities, and what he liked to do. During the fall open house, this peer 9s mother introduced herself to the learner's parent. She explained how her son had captivated the family at the dinner table with the story about his classmate. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 8 Proximity Learners who are deafblind often are unaware of who is in close proximity, because of their combined vision and hearing losses. The distance of a communication partner is critical. Proximity is a key component to connection with peers. For a person who is deafblind, communication partners often must be within arm 9s reach. The learner may not know that people are in the environment. Classmates often need to touch the learner who is deafblind to let him/her know that they are there, maintaining physical contact during an interaction. One learner, who could see, searched for his friend. The space between them had to be within the learner 9s visual field in order for him to see his friend. The addition of touch was also important for clear identification of the friend. The distance required to receive sign language was important for all students; it ranged from hand-to-hand to a few feet away. Cooperative learning groups in classrooms needed to have peers within easy reach of the learner. When you touch my hand, I know you are close and I can use my hands to see what you are sharing with me. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 9 Manners In some situations, learners who are deafblind needed to learn proper manners for relating to peers. For example: A learner used his feet to get attention from his classmates. He needed to be taught to use his hands to interact with his peers. All of the learners needed to learn how to greet peers and say goodbye. One of the learners used a switch to activate a tape that greeted his friends and shared news from home. One mother planned a pretend tea party for her son and other children in the neighborhood. She wanted him to learn social manners through pretend play. He learned to use his residual vision and hearing to participate. He was able to take turns with the other children in pouring pretend tea and choosing and eating imaginary cookies. Modeling Interactive Techniques Project personnel demonstrated the use of different methods for connecting with the learner; for example, using hand-under-hand tactile signing, introducing name signs, and using objects. Touch was modeled for peers. Following an inservice, a teacher reported, cAll these hands touched the learner to say Hi. d The learner had new opportunities to listen to peers and to interact with them. Please p our m y tea. I love it! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 10 Spontaneity Sometimes the best social interactions are spontaneous. A classmate brought in a homework assignment that she had adapted on her own so her friend who was deafblind, could touch, explore, and understand it better. A future teacher in the making!During a table setting activity, a spontaneous event occurred that captured the attention and playfulness of all the students. They learned how to create and play with shadows on the table as the sun streamed into the room. The shadows became interesting topics of conversation. The interactions motivated and maintained the attention of the learner and his peers for several minutes 4unplanned but rich in social interactions. Community Experiences Real-life learning experiences in the community can be a way of establishing social relationships. Some programs provided community experiences; others did not. Community outings occurred more frequently for one learner because his teacher arranged transportation with the city bus company. This arrangement broadened the learner 9s experiences as a member of his community. Another learner had the opportunity to plan trips to stores, where he enjoyed shopping with classmates. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 11 The other five learners were classroom-based, and community experiences were left up to the parents. It was difficult for one learner 9s parents to include him in family outings because of his physical size and behavioral challenges. Two of the children were actively involved in after-school activities (wheelchair games at a nearby university, pretend play activities with neighborhood friends and with siblings, scout troops, dance classes, and church groups). Summary: Socialization Communication Portfolios captured the primary objective of this grant. Communication partners began to understand the learners 9 non-traditional forms of communication. What was most interesting was that through the Portfolios, peers began to have conversations and interactions with the learner. Sometimes these interactions required no words, such as when two children took turns with a toy and enjoyed parallel play. A teacher 9s words best conclude this section on socialization. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 12 We are teaching understanding every minute of the day when we 9re in here, and it shows with Jacob. Every time we do an activity, honest to goodness, the children think of how they can adapt it so Jacob can enjoy it. It has just evolved; evolved because he is an accepted member of our class. For Jacob, I think he is getting a lot out of the social aspect of the classroom. What has happened in my classroom is phenomenal! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 13 VI. Effective Educational Practices The Project personnel provided a series of inservice training for teams to develop their knowledge and skills in effective practices, such as discovering and understanding the learner 9s ways and reasons of communicating and interacting with others; the need for real-life learning experiences and involving the learner in the total process; using a conversational approach and understanding and using a calendar and/or a schedule system. Remember, like all children, the learner with deafblindness learns by doing. She needs to be given thoughtful access to people, things, and environments that happen moment by moment. For each interaction throughout the learner 9s day consideration was given to the visual, motor, and auditory properties of the interaction. Other important practices to share with the learner 9s team were placement of objects and educational materials and the respectful awareness that the learner 9s hands were their eyes. The Portfolios became a visual reminder of effective practices. Let me feel your signs.Put your hands under mine. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 14 Real-Life Learning: Natural Learning Concepts are the ideas we develop about things, people, events, and feelings. Concepts require real-life learning through repeated natural routines. In order for concepts and communication to develop, the learner must be involved in the entire process of an activity, from the beginning to the end. For example, if the learner does not help take juice from the refrigerator, she may not understand why it is cold and where it came from. Most of what sighted and hearing people know was never learned in school. With normal vision and hearing, we learned what crying and laughing mean, what grass and clouds are. We learned our names. We learned about our homes and Tell me what we are doing! Use objects, touch, gestures, and tactile signs. I need time to understand and respond. I need someone nearby to help me understand what is happening. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 15 our families. No one ever taught us; we learned naturally. Learners who are deafblind must be taught everything. They need access to real-life learning experiences. Each activity needed to be presented as a total process. The learner learns by doing. For example, the learner who does not see or hear very well may have no idea that his mother arrives home by car and comes through a door before she kisses or hugs him. To the learner who is deafblind, objects and people seem to appear and disappear magically, if the learner is not involved in the entire process of the activity. Sighted and hearing children learn naturally by observing, listening, and interacting with others. Hand-under-hand technique, where the communication partner puts her hands under the learner 9s hands, allows for free and shared exploration and access of the environment. The learners, throughout this project began to actively participate in more natural routines such as hanging up a coat; making juice from an orange; buying food at the grocery store. Team members began to appreciate the importance of real- life/natural learning and the seven students got new schedules to allow for natural learning experiences: feeling rain on their faces, exploring a puddle, shopping, cooking, going to a swimming pool. Active involvement of the learner encouraged both communication and concept development. Conversations All people learn to communicate through conversations. The first conversations have no words. A mother imitates her baby and they begin reciprocal interactions; they take turns. Communication requires two people; conversations Let me feel. My hands are my eyes. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 16 require a shared topic and mutual turn-taking. The first topics come from the learner 9s interests. Competent communication partners discover topics that interest the learner. They understand the importance of waiting, taking turns, and following the learner 9s lead. All quality conversation requires a shared topic, a balance of turn-taking, mutual attention, a comfortable position, and empathy. Please refer to Remarkable Conversations (Miles, B. & Riggio, M. 1999) for more information. M y turn! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 17 Calendars/Schedules Understanding and organizing time is a critical component of communicating. We all use some kind of calendar or schedule system to help us remember the past, think about the present, and anticipate the future. Calendars and schedules are crucial for learners who are deafblind. These may be object calendars, or they may consist of pictures and/or words. Mom, I had a contest today at snack to see who could drink the most juice. I won! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 18 An object calendar/schedule above and a picture calendar/schedule below A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 19 The learner may use objects and/or pictures to anticipate and remember his/her schedule. Concrete symbols support memory, learning and anticipation. An object calendar has several boxes that represent the different activities of the day. The last box is a Finished box for objects and the red pouch is the Finished section for pictures. The learner can refer to the Finished section later to remember what she/he has done during the day. At the end of each activity, the learner puts the object in the Finished box. When the learner puts an object or a picture in the Finished container, she knows that the activity is complete. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 20 The availability of objects for some learners and pictures for other learners allows the learner access to topics of conversation. The communication partner should create the schedule with the child to promote conversations and interactive communication. I 9m looking for my swimming picture! Here it is! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 21 This learner uses her vision very well to access her computer screen and to look at her schedule pictures. I use my computer, what will we do today? A Communication competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 22 VII. Vision Adaptations Vision losses were different for each of the learners. Some of the modifications used by these seven learners included color, contrast, elimination of glare, lighting, distance, size of print, placement of materials in relationship to the learner, use of materials, and elimination of visual clutter (things look messy). A Communication competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 23 For one learner with a documented lower field loss, materials were presented in his upper visual field. His educational team designed a clear Plexiglas board to hold materials within a certain visual distance. The team attached materials to the board using Velcro. Can you see the Plexiglas board? My teacher is sitting in front of me. Can you see my three choices? They are side to side. When I see my choices like this, my muscles can relax, I can use my eyes to answer. It is easier and I am less tired. I use the Plexiglas boards in many places. Can you see the yes/no symbols on my wheelchair tray? I use these on tables in school and everywhere I go. A Communication competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 24 Two of the learners had usable vision in one eye only. Note the distance the learner in the first picture chooses to look at pictures and print. Notice the size of print and the location placement of the white board in the second picture. I can move the book to where I can see best. I need lighting from my left side. A Communication competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 25 *Please note the enlarged print in the box above. This student is able to see and read this size print. This is my shopping list. I can see the words on the white board.* A Communication competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 26 This learner needed worksheets to be presented at an angle to see them well. Two binders placed on top of each other were an inexpensive adaptation. Do you see the binders? I like to do my schoolwork like this. It is easier for me to see. A Communication Competency Model-Massachusetts Match maker Project CFDA 84.326C Page 27 VIII. Auditory Adaptations Hearing loss is unseen; it is the silent loss. Understanding a learner 9s hearing loss is an even greater challenge for education teams. This challenge is more complex when combined with vision loss. The combination of vision and hearing losses is not additive but highly complicated, complex and unique for each learner. Having knowledge and understanding of the impact that hearing loss has on the development of language and social connectedness is critical. Just because a learner enjoys music or turns toward a slamming door doesn't mean he understands speech. Understanding the difference between hearing and discriminating speech is critical when working with learners who are deafblind. Using the Portfolios, teams better understood the hearing process and the learner 9s hearing. They came to understand that information presented auditorially may or may not be heard due to environmental factors, such as the impact of distance on the learner 9s ability to receive sound. The importance of maintaining and using the hearing aids was a priority for inservice training. For each learner, management and use of hearing aids was unique. Four of the seven learners wore hearing aids; two of these four used an auditory trainer in school. This reduces the amount of ambient noise, while enhancing and focusing the learner 9s attention in the direction of the teacher or the person using the microphone. Teachers shared the auditory trainer microphone with the learner 9s peers during group discussions or when peers asked questions. The difference Please be sure the room is not too noisy. Then I can use my hearing aids to listen. A Communication Competency Model-Massachusetts Match maker Project CFDA 84.326C Page 28 between an auditory trainer and a hearing aid, learning how it is used and how it works, was important for team members. People tend to use the term cFM System d, rather than cauditory trainer. d Passing the microphone is an excellent strategy. Class discussions often happen so spontaneously that the microphone cannot keep pace with the very fast interactions. Teachers learned to slow down the pace and invited classmates to do the same. My teacher uses a microphone and the sound of her voice goes right to my ears. She passes around the microphone I love to hear the stories and my classmates voices. My teacher uses a microphone and the sound of her voice goes right to my ears. She passes around the microphone. I love to hear the voices of my classmates. A Communication Competency Model-Massachusetts Match maker Project CFDA 84.326C Page 29 I use two hearing aids because my ears don 9t work like yours. Hearing aids help me listen to you. I like to talk to everyone. My hearing aids have batteries. Cool, huh? Every day we check my batteries to be sure that they work okay. I touch my ear or pull my hearing aid out if the batteries stop working. New batteries are kept in my backpack. My hearing aids are digitized like a little computer by an audiologist, who checks and tests my ears. Take a look at my shirt. My hearing aids are clipped to my shirt with otoclips. A Communication Competency Model-Massachusetts Match maker Project CFDA 84.326C Page 30 Play telephone with me! I can hear the telephone with my hearing aids. A Communication Competency Model-Massachusetts Match maker Project CFDA 84.326C Page 31 One learner had an environment that was rich in using sign language paired with voice. *Please note the enlarged print in the box above. This student is able to see and read this size print. I wear hearing aids because the hearing loss in both ears is severe. With my hearing loss, I do not understand what you say, but I can hear your voice. Please talk to me when you sign. Remember when you sign, I only see out of my left eye, and you need to be within arms length for me to see the sign.* A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 32 IX. Motor Adaptations The complex effects created by the losses of vision and hearing are further complicated by a learner 9s motor challenges. In addition to their vision and hearing losses, five of the seven learners had significant motor challenges that required support from physical and occupational therapists. Daily considerations, activity by activity, were given to the placement of materials, the use of adaptive materials and motor techniques. Can you find the blue ball switch on my wheelchair? It 9s called a gooseneck toggle switch. When I hit it, I can talk to you. My mom and teachers can easily change the message for me. I like the switch to be in the same place so that I can use it when I want to! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 33 Here a desktop has been modified to bring the materials closer and make it easier to see and use the materials. My sister Kim came to my music class. I can 9t see. She pulled a rope close so I could reach it myself like the other kids at circle time! I like music. I like doing things on my own. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 34 I do not need to bend my neck when you use binders! A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 35 I like to talk about my family. I use the green switch as a mouse. I need all this stuff for my arms, neck, and head to help my muscles calm down. When my muscles are calm, I can click the mouse easily. My mom and teachers can show you how to set this up. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 36 I like to relax with my brother. I need to get out of my chair. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 37 Summary: Adaptations We use our vision, hearing, fine and gross motor capabilities to access people, objects, and environments. A critical component of working with learners who are deafblind is adapting and modifying environments throughout the learner 9s day. We become environment engineers. We must be vigilant about distance, size, I like to relax with my brother I need to get out of my chair I can touch and see pictures easily when they are at an angle like this. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 38 contrast, color, and lighting. We must be careful about the loudness and softness of sounds and their sources. We must be thoughtful about physical accessibility, and the use of special equipment and adapted materials. With appropriate adaptations the learner can better understand the world and communicate more effectively with others. X. Systems Change A system is a group of people or agencies that work together or mutually support each other 9s work to achieve a common goal. There are five system levels for consideration when working with individuals who are deafblind, which include building level, district level, county level, agency level, and state level. Change is an act of making something different. Therefore a simple definition of systems change is to change a system, whether in part or in whole, with the expectation of improving outcomes. There are six criteria that define and shape systems change efforts.1) A substantial need is agreed upon by the partners. 2) Shared leadership and commitment exist among the identified partners. 3) Partners share resources to support and maintain the initiative. 4) Multiple technical assistance strategies are used to improve outcomes for both students and systems. These may include strategic planning, training, and case studies. 5) Technical assistance strategies used are known to be effective and are based on research. 6) Partners use an ongoing planning process and specific methods to document the progress of the initiative. (Davies, P., McNulty, K. & Bixler, B., 2003). Parents are the most important partners in bringing about change for their sons or daughters. They are truly lifelong advocates for their children. In the next section we will see how this project met the six criteria stated above. We will then apply these changes to the building, district, agency, and state levels. Substantial Need Agreed Upon by the Partners Today, more than any other time in the history of education, learners who are deafblind are being educated in their home schools with their same-age peers. The pool of qualified teachers, assistants, paraprofessionals, and interveners is small. More than ever before, there is a need to provide local education programs with the information, training, and technical assistance required to serve learners who are deafblind in their home schools. Inclusion is not just a place in the classroom; it is a quality program rich in communication opportunities. This requires an understanding of the learner 9s ways and reasons for communicating; how she interacts with others and how she processes information. A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 39 The field of deafblindness has amassed a body of knowledge, including strategies and effective practices. From these we must create practical and effective ways to enable local educational teams to ensure quality outcomes for learners. School districts and classroom teachers often contact the New England Center Deafblind Project for technical assistance and consultation. The questions they ask again and again are cHow can we teach the student who is deafblind? How can I communicate with my student? Where do I begin? d. Getting to know the learner may take a new team nine months or more, and by then the school year is almost over. How, then, can we design technical assistance to reduce the length of time it takes new communication partners and teams to get to know the learner? What would help new team members start where the previous team left off? How can we help teams communicate with the learner? With these questions the Match Maker Project was born. Needs of Teams Within this project teachers and teams needed support in modifying and adapting their curricula to include the unique learning style of the learner who is deafblind. They needed help understanding and interacting with the learner. They needed help to understand, modify or set up communication devices, calendar systems or picture/object books. They needed to generalize the modifications and adaptations across the learner 9s scheduled day and among staff interacting with the learner. The learner needed better quality IEPs and programs. The Match Maker Project attempted to acknowledge the strengths and to support each of the learner 9s school systems, paying attention to the values, organization, resourcefulness, stability, and optimism of each one. Based upon the needs of teams, including the families, we began by using a person-centered process to plan for the learner 9s future, anywhere from a few months to a year or more. Taking this process one step further, we designed the Communication Portfolio. Communication is the primary goal for the learner who is deafblind. The Portfolio (book/text and video) helped new teams understand the learner 9s communication needs, in the areas of visual modifications; the placement, distance and size of materials; the importance of touch, proximity to peers, and peer interactions; identifying motivating activities; and identifying possible accommodations. Creating this joint focus among team members played a key role in facilitating effective communication interactions with the learner. The Portfolio created a shared visual history of what the learner could do, as well as her current and future goals. Partners Share Resources The New England Center Deafblind Project and the Massachusetts Department of Education shared equally in funding the conceptual framework designed by the New England Center Deafblind Project. The New England Center Deafblind A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 40 Project provided ongoing management of the budget, supervision of project staff, and completion of products. Local school districts allocated staff time to meet and work collaboratively with project staff. The Massachusetts Department of Education continues to involve the New England Center Deafblind Project in trainings and collaboration to improve services. Using Technical Assistance Strategies for Both Students and Systems Six of the seven learners 9 parents and school districts sought support to obtain an evaluation designed for the learner who is deafblind. Having this information assisted teams in making better placement and program decisions, based on the needs of the learner. One might assume this is a given. However, the complex communication needs of the learner who is deafblind can be confusing and sometimes overwhelming. Technical Assistance Strategies Based on Research An earlier section discussed effective educational practices many of which come from research. This project attempted to apply effective research to the development of a Communication Portfolio. (van Dijk, J. 1986, Finnie, N. R. 1970, Brennen, V., Lolli, D. & Peck, F. 1996) The Communication Portfolio, a consistent reminder of the placement of materials and effective interaction strategies is key to understanding and mutual collaboration. Partners Monitor Progress The deafblind specialist documented each visit to the school or home with narrative data, photographs and, sometimes, video footage. Telephone conversations, e-mail conversations, and faxes sent and received were documented. During the evaluation and dissemination phase, all the data were separated into categories: families, socialization, effective practices, and systems change. There was overlap of materials, as some fit multiple categories. For example, we consolidated the modifications and adaptations sections and included them in the category of effective practices. The category of inservice training was included under systems change. System Change at the School Level The following stories highlight systems change at the school level. During all meetings related to the learners 9 unique needs, the deafblind specialist encouraged teams to keep a record of what worked and what did not work for the learner. This was included in the Portfolio. One of the learners transitioned into a first grade classroom with an experienced first grade teacher. This was the teacher 9s first experience with including a learner with deafblindness in her classroom. She was extremely apprehensive A Communication Competency Model-Massachusetts Match Maker Project CFDA 84.326C Page 41 and expressed concern about being able to design an educational program and materials to meet the unique needs of the learner. The deafblind specialist met with the teacher prior to the learner entering the classroom. After reading the Portfolio and talking to the deafblind specialist, the teacher expressed great relief and knew that she could do a competent job. During another learner 9s IEP meeting, the speech therapist asked for an understanding of how this learner 9s combined vision and hearing losses affected his ability to learn. The team requested training in methods designed for teaching tactile recognition of letters in braille, and the use of these letters in reading acquisition and comprehension. They also requested information and training on adapting equipment so the learner could sit with his peers comfortably and within arms reach. The Impact of the Project on Building Level Personnel Following an IEP meeting for one of the learners, the building principal realized that he had another student in his school with combined vision and hearing losses. He requested support from the New England Center for the other student and classroom team. In another school setting, the principal requested support for other students who were deafblind. The students needed support with transitions, low vision evaluations, and guardianship. Team Requests The deafblind specialist received e-mails and faxes from team members prior to meetings, requesting that certain issues be addressed. For example, a teacher of the visually impaired requested that the deafblind specialist caddress the advantages of using a daily tactile calendar with one of the learner 9s. Can you demonstrate its use? Can you model what you mean by a cteam approach d? d Another time, the deafblind specialist developed a set of questions to be discussed during the IEP meeting, faxing and e-mailing the questions ahead of the meeting for all members to think about. Questions included how to train the support staff in specialized skills and how to develop a program for the student. The deafblind specialist and other team members identified the main goals: for the

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