Deaf-Blind Perspectives Spring Volume Sixteen, Issue One Fall 2008 Executive Editor John Reiman Managing Editor Peggy Malloy Production Editor Randy Klumph Deaf-Blind Perspectives considers all unsolicited manuscripts and employs a process of internal review and in some cases review by external content specialists to assist with editing or determination of acceptability for publication. Submissions may be sent by mail to the address below, or by e-mail to Peggy Malloy (malloyp@wou.edu). Deaf-Blind Perspectives Teaching Research Institute 345 N. Monmouth Ave Monmouth, OR 97361 TTY (503) 838-8821 Fax (503) 838-8150 http://www.tr.wou.edu/tr/dbp In This Issue Mike Collins (1947–2008) The Lorm Hand Touch Alphabet: Background, History, and Uses Keynote from the Kitchen The Morning Walker Creating Opportunities for Tomorrow: DeafBlind Transition Camp 2008 AER International Conference: A Report from the Multiple Disabilities and Deafblind Division NCDB’s Personnel Preparation Consortium Sayreville Teen Overcomes Obstacles as High-School Basketball Team Manager Research Update For Your Library Conferences and Online Learning Opportunities Announcement Mike Collins (1947–2008) John Reiman Executive Editor, Deaf-Blind Perspectives Mike Collins, Director of International Programs at Perkins School for the Blind, died May 16 from lung cancer at age 60. Mike was an advocate for deaf-blind individuals throughout the world and a leader in the field of deaf-blindness for three decades. Print version contained a photo of Mike during a trip to India. He is shown giving a common Hindu greeting, bowing slightly and hands together at the fingertips. As the deaf-blind community across the globe bids farewell and pays tribute to Mike Collins, I would like to celebrate what I admired most about him—his humor, his humility, his integrity, and his commitment. These qualities, woven throughout the fabric of his being, lived loudly in the words, spirit, and actions of this quiet and unassuming man. With his gentle smile and wry wit, Mike could, with perfect timing, deliver a profound commentary. He was able to take absurdities and inconsistencies, particularly when they related to inequities and social injustice, and brilliantly illuminate them. Mike’s laughter, whether born of joy or commentary, survives him. It is rare to meet a person, particularly one who has contributed so much, who is as unpretentious and humble as Mike was. Whatever he did, it never seemed to be about him. I came to understand at his memorial service how deeply his life path was informed by his rich faith. His service was to something beyond himself–something he could tap into, be filled by, and give back to. His generosity across every dimension of his life was no doubt drawn from this wellspring. We should be proud of who we are, and we should joyfully celebrate what we are accomplishing. - Michael Collins Men of high integrity stand out. Mike’s honesty and clarity of conviction were exemplary. His immutable core values were not blown about by the winds of political expedience. He was a master at clearly and strategically speaking his truth. His fluff-free communication style was a dependably congruent reflection of his interior nature. Mike’s dedication and commitment to the field of deaf-blindness and to human beings who are deaf-blind made a world of difference. He knew the history, the landscape, and the challenges, and applied this knowledge as a potent activist worldwide. His leadership and vision, in the United States and abroad, provided a foundation for the cultivation and development of programs and practices that are highly responsive to who and what really matters. His perseverance, dedication, and tenacity were apparent until the end of his life. In February, Mike wrote the following in an email: “Writing to you from my chemo chair. So you see, I still don’t waste time. A few bad days after chemo, but otherwise I work at least 6 hours every day, and more on most days. Only big change is a refusal on my part to deal with trivial issues. Whatever time I have left to contribute is going to be on the big issues, and not the mundane." Well Mike, thanks for being such an effective lifelong warrior for the big issues. The influence of your journey will be felt for generations to come. You would likely be embarrassed by all the testimonials to you, the adoration and the deep expressions of gratitude for the gift of your life. If profound impact and modeling the best of what human beings can aspire to are the criteria, yours was the gold standard evidence-based life. You are missed. Perkins School for the Blind has created a web page, http://www.RememberingMikeCollins.com, where friends and colleagues can share their memories of Mike. The Lorm Hand Touch Alphabet: Background, History, and Uses Elon Deiml Charles University of Prague Boris Titzl Charles University of Prague and University of Hradec Králové Elias Kabakov and Debbie Toubi Center for Deaf-Blind Persons, Israel Communication with individuals who are deaf-blind can take many different forms, depending on the type and degree of deafness and blindness, on the forms of communication with which they are initially or eventually familiar, and on personal preference. Some deaf-blind individuals have partial vision or hearing for part or all of their lives. The systems for communicating with and receiving communication from completely deaf-blind individuals that were in use in the nineteenth century, particularly in Belgium and what is now the Czech Republic, were cumbersome and slow. There was a real need for a simpler system. Fortunately for the deaf-blind population, deaf-blind European philosopher, poet, and journalist Dr. Heinrich Landesmann (1821–1902) created such a system. Landesmann, who was born in Mikulov (on the Czech side of what is now the border with Austria), lost almost all of his sight and hearing as an adolescent and later in adulthood became completely blind. In 1847, after the books and articles he wrote in Vienna raised the ire of the Austrian chancellor, Prince Metternich, he moved to Berlin and adopted the pseudonym Hieronymus Lorm in order to keep himself and his family safe from police persecution. Later, he moved back to Vienna and finally, late in life, to Brno in the Czech Republic. His pseudonym, Lorm, became the name of the alphabet system that he invented to communicate with his family. He preferred not to publish the system, but after his death, his daughter, Marie Landesmann, publicized the Lorm hand touch alphabet in the German language (Landesmann, 1908). To date it has spread around the world and been translated into many languages, including English, Czech, and Hebrew, in which it is called the “The Alphabet Glove.” The Czech version was created by Aquina A. Sedláèková, a teacher at the Institute for the Blind in Prague, and she contributed greatly to the establishment of this method as a means to teach children. Her main innovation was to arrange the letters in alphabetical order, which made the system easier to learn. From 1911, when she began to use her version of Lorm’s alphabet, to 1947, the system was in use in the Czech Republic. It is unclear why it fell from use. However, in 1993 the LORM Society for Deafblind was founded, and members soon created a new version of the Lorm system, in which finger strokes were added to the point touches on the palm. Today, the homeland of the Lorm system boasts three associations for the deaf-blind and two schools, all of which use a variety of communication systems with different clients, including the Lorm system when it is appropriate. Print Version contained a photo of Dr. Heinrich Landesmann (Hieronymus Lorm with white hair and beard, wearing a black suit and black bow tie. Reprinted with permission from the LORM Society (www.lorm.cz) The Czech version was created by Aquina A. Sedláèková, a teacher at the Institute for the Blind in Prague, and she contributed greatly to the establishment of this method as a means to teach children. Her main innovation was to arrange the letters in alphabetical order, which made the system easier to learn. From 1911, when she began to use her version of Lorm’s alphabet, to 1947, the system was in use in the Czech Republic. It is unclear why it fell from use. However, in 1993 the LORM Society for Deafblind was founded, and members soon created a new version of the Lorm system, in which finger strokes were added to the point touches on the palm. Today, the homeland of the Lorm system boasts three associations for the deaf-blind and two schools, all of which use a variety of communication systems with different clients, including the Lorm system when it is appropriate. At the heart of the system is a thin cotton glove or a diagram of the hand with the position of each letter or symbol marked for the convenience of the sighted person who wishes to communicate with this system. Every word is spelled out letter by letter, by touching the appropriate points on the hand. The deaf-blind person must memorize the diagram of letters in order to decode what is being said and to be able to respond or initiate a conversation. This type of tactile communication also requires knowledge of the written form of spoken language. Practically speaking, it functions as a “code” for spoken and written language. For examples of English and Czech versions of the Lorm alphabet, see the following web sites: * http://www.scn.org/anon/dossiers/deafblin/ deafblin.htm (English) * http://lorm.cz/en/alphabet/alphabet.php (Czech) Print version contained an image of a hand displaying the appropriate points to be touched to communicate with the Lorm alphabet Hebrew version of Lorm alphabet (Deiml, 2007). Compared to some code methods, the Lorm system is relatively quick to learn and use. It is faster, for example, than print-on-palm or even fingerspelling. All three methods require spelling out each and every word. Print-on-palm can be used by anyone who knows how to write. One draws the letters with one’s finger on the palm of the deaf-blind individual’s hand. Hence, it is a slow and tedious way to communicate. Fingerspelling must be learned, but it is simple and easy to master. Other tactile code systems include Braille and the ABC communication board. Overall, the inherent disadvantages of code systems, primarily the need to spell things out and the lack of the characteristics of language used between people, make them unpopular, especially when other easier options are available. Tactile sign language (sign language adapted to touch) is usually preferred by deaf-blind individuals who have learned it and who usually do not have other options. Sign language is the only actual language that is easily adapted to touch (as opposed to codes of spoken languages like writing or print-on-palm). It is, therefore, a fluent, natural, and faster way to communicate, especially for individuals who are accustomed to using it. However, in cases where a completely deaf-blind individual needs to communicate with someone who has not learned sign language (and there is no interpreter available), Lorm is recommended as a means of communication. Deaf-blind individuals who are accustomed to communicating at the same pace as speech (whether by sign language or by speech) may show resistance to learning Lorm. They may be deterred by the slowness of its use. The rehabilitation process is important here, so that personal resistance won’t prevent learning and using this practical and efficient method of communication. Itzik Hanuna, a deaf-blind Israeli Lorm user, commented that, “compared to fingerspelling it’s faster; anyone can use it. The letters can be on a glove or I can put the page next to me, you look at that page and anyone can use it. Another advantage [as compared] to sign language is that I feel that a person is talking to me more directly.” Another advantage is that the deaf-blind person can receive information without moving his or her hand, making it possible for individuals who are paralyzed to use it to receive information, as long as they can feel gentle pressure on their hands. This can be a real lifeline, as in the case of a deaf-blind Israeli woman who currently communicates by fingerspelling but who may be left paralyzed by an upcoming operation. The Czech LORM Society has about 120 clients and is in contact with 60 other deaf-blind individuals. The study of Lorm is included in their rehabilitation and in education courses, with additional training available on request. Lorm is taught both as a means of communication between deaf-blind persons and as a complementary communication system with hearing-sighted individuals. For example, one 60-year-old man in Brno in the Czech Republic, who usually uses sign language or tactile sign language (depending on the situation), uses Lorm to learn and explain new signs. He also uses Lorm to communicate with his mother because she does not know sign language. (J. Kašparová, personal communication, 2008.) Overall, the Lorm system is currently in regular use by a small number of individuals around the world. It is more commonly used, at least initially, when loss of vision precedes loss of hearing. However, because Usher Syndrome is the leading cause of deaf-blindness, in the majority of cases of deaf-blindness, hearing loss occurs first. The syndrome is a genetic disorder characterized by hearing impairment (from birth or early childhood), retinitis pigmentosa (a progressive, degenerative eye disorder), and sometimes balance problems. Loss of vision is gradual throughout life, often first noticed in adolescence, and individuals with this syndrome tend to use sign language initially and only later in life add Lorm to their communication skills. This article is dedicated to the memory of Elsa Dreyfuss, a deaf-blind woman who communicated with Lorm’s alphabet and Braille in more than five languages. Elsa was born in Frankfurt, immigrated in 1938 to Amsterdam, and died in a crematorium in a concentration camp because she was a Jew (Cohn, 1951). References Deiml, E. (2007). Hebrejská verze Lormovy dotykové abecedy [Hebrew versions of Lorm hand touch alphabet]. Specialni pedagogika, 17(1–2), 81–87. Cohn, L. (1951). Slepá, hluchá a prece št'astná [Blind, deaf and still happy]. Práce invalidù, 2 (1), 13–14. Landesmann, H. (1908). Finger-zeichensprache für taubstumme, taube, taubblinde und sehwerhörige [Signing language for deafdumb, dumb, blinddumb and partially deaf]. Brünn: Marie Landesmann. Jana Kašparová contributed the information about the LORM Society for Deafblind in the Czech Republic (http://www.lorm.cz). Author contacts: Elon Deiml: E-mail: edeiml@yahoo.com Elias Kabakov, Professional Director, Center for Deaf-Blind Persons: E-mail: elias@cdb.org.il; or web site: http://www.cdb.org.il Dr. Boris Titzl, Ph.D.: University of Hradec Králové, Department of Special Education, Rokitanského 62. E-mail: boris.titzl@pedf.cuni.cz Keynote from the Kitchen Nancy O’Donnell Coordinator of Special Projects Helen Keller National Center for Deaf-Blind Youths and Adults All professionals can benefit from a network of colleagues with whom they share information and resources. In a small and specialized field such as deaf-blindness, the need for such collaboration is crucial. Yet, with travel costs exploding and the demand for accountability in the workplace at an all-time high, those of us working in the non-profit world are being called upon to become more effective and efficient than ever. For many years, I have been involved in research on Congenital Rubella Syndrome (CRS). In the 1980s, we learned that adults with this syndrome are at risk for developing additional health problems. The number of professionals working with this population is quite small, and the need to share information internationally is critical. How can we do this in a timely and cost-effective manner? Last year, a colleague invited me to participate in her very clever solution. One Thursday evening last summer, I sat poised, ready, and a little nervous at my kitchen table. This nervousness had nothing to do with the usual source of my kitchen anxiety—meal preparation! The kitchen table was empty except for a glass of water and my laptop. My family had been asked to avoid the kitchen for the next three hours. A handwritten sign on the front door of the house asked visitors to enter quietly. The screen on my laptop was opened to the first slide of a PowerPoint presentation. A small square in the top corner of my monitor showed an image of me as I would soon be viewed by others at a remote location. At 8:20 p.m., I heard a voice through my headset, welcoming me and checking our voice and video connection. Once these were established, we went “live.” I heard myself being introduced as the keynote speaker, presenting on CRS to a conference halfway around the world and a half day ahead—in Japan! The mechanism for this presentation was a free Internet-based program called Skype. Skype and programs like it, such as Sight Speed, use the Internet rather than telephone lines for voice and video communication. Instead of speaking into a telephone handset, I spoke through a microphone plugged into my computer. Instead of being dialed with my phone number, I was “called” on my computer via my Skype username. When called, I heard a sound on my laptop similar to a telephone ringing, I clicked “Connect,” and I was able to hear my colleagues around the world through a headset, also plugged into my computer. All of this while sitting at my kitchen table! The option of live video was made possible through the use of a webcam, a video camera made specifically for computers and the web. My laptop came with a webcam already built in. (If your computer doesn’t have a webcam, you may purchase one relatively inexpensively and install it.) The mechanics of the presentation were quite interesting. In Japan, my “real time” image was projected onto a large screen at the front of the meeting room. Next to that was a second screen which showed my slides translated into Japanese. A third screen showed my presentation in English. First, colleagues at the conference “introduced” me to several individuals with CRS and their families who were attending the conference. Then, because the webcam is mobile, they panned the room with it to allow me to see the participants and the physical layout of the setting. During my presentation, the webcam was trained on the English version of the PowerPoint visuals to help me keep my place. During breaks, they swung the camera around so that I could see when the participants had returned to their seats. The success of this event was ensured with the help of several preconference trial runs and great technical support. We tested the speed of our Internet connection, played with lighting and location at my end, and adjusted the pace of the spoken presentation, taking into account English/Japanese/sign language translations. On the day of the conference, everything proceeded seamlessly. A huge “thank you” goes to Megue Nakazawa of the National Institute of Special Needs Education, the creative and resourceful person who pulled all of this together. In times like these—when the need to share information is as important as ever but travel is costly and time consuming—the use of technology like this makes fiscal and professional sense. Besides that, it was great fun to present my “keynote from the kitchen!” The Morning Walker John Lee Clark I walk each morning through the woods. It is my job. Someone has to do it to bring home morning light. I greet it in the glade where dew rises to let my white cane catch the light. Still fresh from rising, the dawn is nervous, jerking in the shadows of the trees lining my pathway. But my cane glows, holding onto the light as it grows bolder in the openings between the trees growing warm. As I make the last turn home, it bounds ahead of me, chasing away new-fallen leaves flying up to my door. By then, the light has grown strong enough to flood my house, and with a flourish of my cane I command it to do so. Light rushes through the windows and around my legs in the open doorway, all at once nuzzling my wife awake while tugging my sons out of bed as it laps my glass of water without draining it. Yes, it is my job to make each morning do its job. I walk each morning through the woods because if not for me, no morning would come in this way. On their own, mornings would come too bright, with a hollow light covering what should be seen imperfectly, imperfectly or not at all, only warmed for imagination. John Lee Clark, who is second-generation deaf-blind, is the outreach coordinator for DeafBlind Relay Services at Hawk Relay. Creating Opportunities for Tomorrow: DeafBlind Transition Camp Beth Kennedy DB Central Jill Gaus SHI-M=DB and DB Central In order for DeafBlind teenagers to become self-advocates and succeed in college, they need a positive and solid foundation on which to build. To help establish this foundation, DB Central (Michigan Services for Children and Young Adults Who Are DeafBlind) has held several summer DeafBlind transition camps (DBTCs) to help college-bound students acquire the skills and knowledge they need to achieve success. DB Central is supported in this effort by an important partner, Self Help for Independency in Michigan Equalizing the DeafBlind (SHI-M=DB), an organization of individuals who are DeafBlind. Print version contained a photo of Shirlisa and Kortney practicing the sign language alphabet (the Deaf and the hard of hearing students wanted to be able to communicate directly with each other). In June 2008, the third DeafBlind transition camp was held at Michigan State University (MSU) in East Lansing. All three DBTCs have been held at MSU because of the university’s strong commitment to accessibility. The criteria for attending the camp are that participants must have combined vision and hearing loss, be between the ages of 16 and 19, and have the desire to attend college or obtain competitive employment. This year, for the first time, registration was open to teens from throughout the United States, with priority given to those from Michigan. Nine teens registered, and seven attended. The teens came from Michigan, Ohio, Illinois, California, Minnesota, and Florida. There was no fee to attend the camp, but participants were responsible for their own travel costs. The camp agenda emphasized the skills and knowledge that college students require for success and independence, including social, time-management, problem-solving, self-advocacy, and self-determination skills. On the first night, the teens participated in drama activities such as the deaf telephone game and miming, to help break the ice and give them a chance to get to know one another. Based on experience gained from the first DBTC, the first presentation on the next day was a demonstration of the use of assistive listening devices (ALDs). This enabled the teens to experiment with this technology for the rest of the camp. Subsequent sessions informed participants about a variety of resources, including support services for college students offered by the Michigan Commission for the Blind, resources for students with disabilities at MSU, and state and national DeafBlind consumer groups. Print version contained a photo of participants; Evan, Cassy, Erick, Kortney, Emily-Ann, Shirlisa, and Julian. Additional topical sessions covered vocational rehabilitation services, career planning, and relevant disability laws and policies. Leader Dogs for the Blind, an organization that provides dog guides to people who are blind and visually impaired, gave a presentation about their training program. Two DeafBlind individuals who had recently completed the program and received guide dogs were part of the presentation. Some professional DeafBlind adults gave presentations or participated in panel discussions about self-determination and self-advocacy and shared their personal stories about being teenagers and attending college. The goal was to provide essential exposure to positive role models to whom DeafBlind teens can easily relate and who serve as examples of what is possible with hard work and the right support system. The camp also provided multiple opportunities for the teens to socialize and develop friendships with DeafBlind peers. All were pleased to have an opportunity to meet other DeafBlind teens. For many, it was the first time they had ever encountered another DeafBlind person their age. Most intend to stay in touch with one another, and to facilitate this, we created a directory of participants’ names, mailing addresses, phone numbers, and e-mail addresses. A separate directory was developed for family members so that they can also contact one another. The most important aspect of DBTCs is the provision of full accessibility all of the time. The teens were able to participate fully in every aspect of the camp, a tremendous boost to their self-esteem. To provide this level of accessibility, we collaborated with the MSU residence hall staff, the MSU Resource Center for Persons with Disabilities staff, a CART (real-time captioning) provider, sign language interpreters, and support service providers (SSPs). Before the camp began, we held a mandatory training program for the interpreters and SSPs that included tips for DeafBlind interpreting, instruction in sighted-guide techniques, an overview of the camp’s agenda and activities, and combined-vision-and-hearing-loss simulation exercises using blindfolds and earplugs. The DBTC teen registration form included questions about accommodation and medical needs so that, with advance planning, each participant’s needs could be met fully. Pertinent information from the forms was used in the training to ensure that everyone was prepared to offer necessary supports for the teens. The presentations were held in a room with window blinds to prevent glare. Each speaker was asked to provide overheads and handouts in a variety of print sizes and in Braille to make the information accessible to each participant. Many of the teens used CART, a form of closed captioning, during the presentations. Each had his or her own computer monitor to view the captioning. The CART provider showed the teens how to adjust the screen background and print colors of the captioning to match their unique visual needs. It was the first time any of the teens had experienced a captioned presentation. Many stated that they would request this type of accommodation when they returned to school. Fun activities provided breaks from the more serious presentations and built self-esteem, encouraged teamwork, and fostered the belief that anything is possible. They were inspired by Games for People with Sensory Impairments (Lieberman & Cowart, 1996) and included bean bag tic-tac-toe, lawn toss, Frisbee toss, parachute pick-up, and baseball. The teens played against adult staff members, who initially thought they would let the teens win to make them feel good. Once the games started, however, it became obvious that the teens did not need anyone to “let” them win. Most of the teens who attended the camp communicated that their experiences and the information they received would assist them in college. Kortney found the camp presentations to be very inspirational and said, “I now know that I should never give up. I will keep trying.” Shirlisa said that the presentations helped her to understand the importance of setting goals. By the end of camp, she was inspired to work towards her dream of learning Japanese and living in Japan. Erick, who at one point during the camp gave a wonderful impromptu motivational speech to the other campers, expressed an interest in returning as a presenter for a future camp. Two other teens offered to return as mentors, and all hope to be involved with a future DBTC in some capacity. We believe that DBTC offers teens opportunities that they can draw on to help make college a positive experience. The camp gave them a taste of success, a self-esteem boost, and the knowledge and skills they need to advocate for themselves. We hope that their camp experiences will contribute to success in college and in their future lives. There will be additional camps in 2010, 2012, and beyond, as long as funding is available and DeafBlind teens are interested. Information about future camps will be available on the DB Central web site (http://www.dbcentral.org) approximately one year prior to the start of each camp. Reference Lieberman, L. J., & Cowart, J. F. (1996). Games for people with sensory impairments: Strategies for including individuals of all ages. Champaign, IL: Human Kinetics. 2008 AER International Conference: A Report from the Multiple Disabilities and Deafblind Division Amy T. Parker Texas Tech University AER, the Association for Education and Rehabilitation of the Blind and Visually Impaired, held its 2008 International Conference from July 22 to 27 in vibrant downtown Chicago. The 1,200 plus conference participants were offered a kaleidoscopic array of information and innovative ideas from the fields of education and rehabilitation for adults and children with visual impairments, including those who are deafblind. Conference sessions covered a broad spectrum of topics ranging from early intervention, to the latest vision-related neurological advancements, to veterans’ issues. Audio-recordings and presentation slides for most of the conference sessions are available for a fee via AER’s web site (www.aerbvi.org). AER’s membership is comprised of a diverse group of professionals, including administrators, vision rehabilitation therapists, orientation and mobility specialists, low vision therapists, itinerant teachers, and support personnel. Individuals may also join as associate members, a nonvoting membership category for people who are not employed in the field. AER has a number of divisions that represent the varied interests of its members. Division 3, the Multiple Disabilities and Deafblind Division, has more than 250 members, many of whom work in the field of deafblindness. Representatives from this division made significant contributions to the conference. In particular, they helped to plan and host a collaborative, all-day session on the Expanded Core Curriculum (ECC), which outlines the disability-specific teaching areas described in The National Agenda for the Education of Children and Youths with Visual Impairments, Including Those with Multiple Disabilities (Corn et al., 1995). The ECC was developed to better meet the instructional needs of students with visual impairments by teaching compensatory or functional academic skills (including communication modes), orientation and mobility, social interaction skills, independent living skills, recreation and leisure skills, career education, use of assistive technology, sensory efficiency skills, and self-determination (American Foundation for the Blind, n.d; Hatlen, 1996). The ECC is important for all children with visual impairments and is especially critical for students who are deafblind because of the intensive, individually tailored instruction they require. The ECC also provides a framework that parents, guardians, family members, and students can use to communicate with students’ educational teams about their unique instructional needs (National Agenda Steering Committee Members, 2002). With financial support and coordination from the American Foundation for the Blind (AFB), representatives from Division 3 and three other AER divisions—Infant and Preschool Services (Division 8), Education Curriculum (Division 10), and Itinerant Personnel (Division 16)—worked together to present the special session on the ECC at the AER Conference, which included the following topics: * the upcoming reauthorization of the Individuals with Disabilities Education Act and its relationship to the ECC; * implementation of the ECC within early intervention and school settings, including residential schools and inclusive classrooms; * effective instructional practices for students with multiple disabilities; * university-level personnel preparation competencies related to the ECC; and * the empowering of families to advocate for appropriate instruction in all areas of the ECC. The collaboration between AER and AFB on this event underscores the collective recognition of the ECC’s importance. Members of Division 3 also presented a number of conference and poster sessions. Some examples of presentation topics included “Children with CVI: Outcomes and Opportunities” by Christine Roman and Alan Lantzy; “Promising Practices for Students with Visual Impairments and Autism Spectrum Disorder” by Betsy Flener, Donna Brostek, and Sharon Froedge; and “Tools for Change: Advocating for Quality Services” by Tom Miller and Marianne Riggio. A few examples of poster sessions that reflected Division 3’s focus included “A Study in Self-Efficacy in Deafblindness Education” by Elizabeth Hartmann; “The Nature of Social Experiences of Students with Deafblindness Educated in Inclusive Settings” by Silvia Correa-Torres; and “Response to Intervention: The Role and Contribution of the TVI” by Tanni Anthony. Division 3 also held a business meeting at the conference to discuss future goals and elect new officers for the 2008–2010 term. Elizabeth Hartmann, San Francisco State University, was elected to be the new chair and Julie Durando, University of Northern Colorado, chair-elect. I was chosen to serve as secretary/treasurer. Jacqueline Brennan, Overbrook School for the Blind, is the outgoing chair. The primary initiatives of Division 3 are to assess the current membership’s needs, expand our roster of members, and to continue to focus on and advocate for the needs of children and adults who are deafblind or have multiple disabilities. To do this, we need the ideas, energy, and contributions of the readers of Deaf-Blind Perspectives. As the field prepares for the upcoming reauthorization of IDEA, it is critical that we all work together to make sure that the law supports the instructional needs of students who are deafblind and those with multiple disabilities. For more information about AER and Division 3, including membership information, go to the web site www.aerbvi.org. We hope to see you in Little Rock for the 2010 conference! References American Foundation for the Blind. (n.d.) Expanded core curriculum. Retrieved September 19, 2008, from http://tinyurl.com/3zpmev Corn, A. L., Hatlen, P., Huebner, K. M., Ryan, F., & Siller, M. A. (1995). The national agenda for the education of children and youths with visual impairments, including those with multiple disabilities. New York: AFB Press. Hatlen, P. (1996). The core curriculum for blind and visually impaired students, including those with additional disabilities. RE:view, 28(1), 25–32. National Agenda Steering Committee Members. (2002). National agenda for the education of children and youths with visual impairments, including those with multiple disabilities: A parent perspective. Retrieved September 18, 2008, from http://www.tsbvi.edu/agenda/parent.htm NCDB’s Personnel Preparation Consortium Gail Leslie National Consortium on Deaf-Blindness When the National Consortium on Deaf-Blindness (NCDB) was funded in October 2006, it was expected to add a third area of focus to the work carried out by NTAC and DB-LINK, the two former projects that came together as NCDB. Along with continued efforts in technical assistance and information and dissemination services, the consortium was charged with addressing issues related to personnel training in the field of deaf-blindness. The beginning of this effort occurred in Chicago, in March 2007, when NCDB conducted a focus group to address and define issues of national concern related to personnel training in deaf-blindness. Participants included professionals from low-incidence-disability and deaf-blind-specific personnel-preparation programs. After two days of brainstorming, a number of issues, challenges, and solutions were identified and a commitment was made by the focus group participants to come together as the national Personnel Preparation Consortium to provide leadership in the field of deaf-blindness. The goals of this group include: * providing a forum to support ongoing dialogue on critical personnel development issues; * promoting cohesiveness on standards, practices, and services for teacher training; and * promoting national collaborative development of a new model of personnel preparation and training. The new consortium met for a second time in New Orleans in November 2007. Building on ideas generated at the first meeting, participants organized into work groups and developed action plans. An initial focus of the consortium was on the need for more cohesiveness within personnel-training standards and practices in the field. The Documents Work Group began this effort by identifying current policies, guidelines, criteria, and competencies used to develop training programs for teachers and interveners who work with children who are deaf-blind. NCDB Personnel Preparation Consortium Members: Linda Alsop, Utah State University Susan Bashinski, East Carolina University Maurice Belote, California Deaf-Blind Services Susan Bruce, Boston College Roseanna Davidson, Texas Tech University Melissa Engleman, East Carolina University Pam Hunt, San Francisco State University Effie Laman, Texas Tech University Linda McDowell, University of Southern Mississippi Stephanie McFarland, University of Arizona Jerry Petroff, College of New Jersey Mary Jean Sanspree, University of Alabama at Birmingham Bill Sharpton, University of New Orleans Rosanne Silberman, Hunter College Alana Zambone, East Carolina University NCDB Staff: Kathleen Stremel, Western Oregon University Gail Leslie, Western Oregon University John Killoran, Western Oregon University Ella Taylor, Western Oregon University Mary Jean Sanspree of the University of Alabama at Birmingham suggested that the consortium apply to the Council for Exceptional Children (CEC) to establish national standards for educational personnel working with children who are deaf-blind. The CEC is the largest national professional organization for educators working with students with disabilities and is the world’s leader in the development of standards for special education teachers. The CEC provides leadership in the documentation of the knowledge and skills needed by personnel for competency in all areas of special education. It accomplishes this by coordinating the development of standards by professionals in areas of specialization. Once adopted by CEC, the standards become what are known as a Specialized Professional Association (SPA). They are used to develop education policy, to determine professional licensure requirements, and to develop practice in special education in conjunction with the standards of the National Council for the Accreditation of Teacher Education (NCATE) for the accreditation of programs that offer degrees and certification. With only five months to meet the April 2008 deadline for SPA applications, a team from the November meeting, consisting of Mary Jean, Linda Alsop from the University of Utah, and Alana Zambone of East Carolina University, began the work of incorporating existing competencies for teachers and interveners into the CEC format. Each description of required knowledge had to be supported by evidence such as a research study, a textbook in the field, or a practitioner publication. The intervener competencies were presented and reviewed at a CEC SPA committee meeting in Boston in April 2008. The review included a process of “smoothing” to eliminate duplication between these and other CEC competencies. The competencies for interveners were approved for field review and in late August were distributed to more than 2,000 professionals, families, and consumers for feedback and validation. The results of the review were addressed at the September 2008 meeting of the CEC committee. The competencies for teachers received their first appraisal at this meeting and will be distributed for field review later in the year. It is anticipated that both sets of competencies will be ready for final CEC committee review and approval by April 2009. This is a landmark event for the field of deaf-blindness. The competencies provide a step forward in the alignment of expectations for personnel development and hold the potential to facilitate greater collaborative efforts in personnel training. The Personnel Preparation Consortium met again in May 2008 after the NCDB Topical Conference in Orlando. This time the group focused on the consortium’s Research Action Plan Work Group’s efforts to develop a framework for classifying existing research in the field of deaf-blindness and identifying future research needs. Other interests of this work group are locating potential funding sources for new research and building connections between the deaf-blind technical assistance network and the research community. The next face-to-face meeting of the consortium will take place in October 2008 in Washington, DC. The meeting will be held at the U.S. Department of Education’s Office of Special Education Programs (OSEP). This location will allow the federal project officers of state deaf-blind projects and low-incidence-disability personnel-preparation programs to attend. The consortium hopes to begin a dialogue with OSEP about its work and opportunities for collaboration within the federal network. The changes in special education introduced by the No Child Left Behind Act have left many in the field of deaf-blindness feeling that they must resolve issues related to the scarcity of highly qualified teachers, the need for research-based strategies, and the challenge of providing quality education for isolated low-incidence populations. With a commitment to coming together twice a year, the Personnel Preparation Consortium has become an effective workforce addressing issues and benefitting practitioners, educators, and technical assistance providers across the country. For more information about the consortium’s work, visit the NCDB web site at www.nationaldb.org. Sayreville Teen Overcomes Obstacles as High-School Basketball Team Manager Erica Harbatkin Reprinted with permission from the Home News Tribune May 27, 2008 Tim Stetler counts in his head as he fills paper cups with water. One-two-three-stop. Then he hands the cup to the player approaching the bench. For Stetler, the team manager for the War Memorial High School basketball team, learning to fill a paper cup properly was a challenge akin to learning to shoot a free throw. Stetler, 18, is deaf-blind and severely brain-damaged. “At the beginning, he wouldn’t know to hand a player a cup as he approached the water cooler, but as the season progressed he knew right away,” said Ben Isabella, Stetler’s mentor. Stetler doesn’t live in pitch black and silence, but he sees everything in double, has nearly no depth perception and has poor peripheral vision. He wears hearing aids, but can only make out certain types of sounds. “Being deaf-blind doesn’t mean you’re Helen Keller,’” said his mother, Blanche Stetler, who works as a family specialist with the state’s deaf-blind project. “It means you have both hearing and seeing problems that you qualify to be called deaf-blind.” Stetler is a Sayreville resident but attends Alpha School in Lakewood. Since his disabilities preclude him from attending school close to home, his mother wanted to find a way to involve him in the community. She called the high school and asked what he could do, and administrators said Stetler could be a basketball team manager if he had a mentor — someone at the school who could provide constant supervision. That’s where Ben Isabella came in. A longtime family friend, Isabella is also a math teacher at War Memorial High School. He agreed immediately to become Stetler’s mentor. Initially, the responsibility was intense — he’d watch over Stetler’s every move and provide constant direction. As the season progressed, Isabella began to take more of a backseat role, watching from the periphery as Stetler carried out his tasks. “One-two-three-four-five-six-seven-eight-nine-ten!” Stetler said excitedly, sitting in a room with Isabella, his mother and basketball coach Shawn Currie. He was referring to the number of cups he fills at the beginning of each basketball game—10 cups of water for 10 players. “Everything is a routine for him,” Blanche Stetler said. Tim Stetler has a complex disorder stemming from sensory neural brain damage incurred in the womb because his birth mother abused drugs (Blanche is his adoptive mother). The complexities of the disorder, coupled with the brain damage, mean that Stetler never had friends or a peer group he could associate with. “Before, my husband and I were his only friends. Now he has people that he can talk to,” Blanche Stetler said. “It’s the first time in his life he’s actually asking questions about other kids.” He still can’t go out with other kids or have extended conversations. But any interaction is exciting for Stetler. He carries the memory of a handshake or a kiss on the cheek long after it’s over. Recently, Stetler started working at Petco four days a week. A job coach works with him as he hands out fliers, cleans cages and takes care of fish. In the summer, Isabella will take over as his job coach. He was handing out fliers a few weeks ago when he met a young girl with Down syndrome. He still talks about it. “Ashley kisses me on the cheek,” he said, gloating. Currie and Isabella laughed and that made Stetler laugh, too. “He gave her a flier and she kissed him on the cheek,” Blanche Stetler said and then turned toward her son. “You have Ashley’s picture?” Tim pulled out his wallet and found a small picture of the girl. Blanche had snapped the photo on her cell phone and made a print so Tim could carry it around. “Ashley!” he said, pointing to the photo. “His relationships are so few and far between that when something like that happens to him he talks about it non-stop because it’s so unusual,” Blanche said. Tim Stetler has never been able to socialize with his peers because he attends school an hour away at Alpha School, a private facility for children with disabilities. He never knew anyone outside his family before the high school basketball team took him in. “When he was working at the basketball games he had something to go back and talk about in school,” Blanche Stetler said, her eyes filling with tears. “It’s the first time he has ever had anything to talk about.” Tim picked up on the emotion and reached over toward his mom."Why are you crying, mommy?" he said, patting her on the shoulder with both sweetness and force. “Stop crying, mommy.’” For Stetler, filling up cups of water and handing out towels at home games is one of his only opportunities to be social. He treasures the varsity letter he received and beams at the prospect of greeting basketball players as he walks through the halls. But it has been a symbiotic relationship for the team as well. That became apparent to Isabella at a specific moment during the season, when Currie was angry and the players were frustrated and no one was happy. Except Stetler. “He’s always smiling and in a good mood no matter what’s going on in the game. He always wants to shake hands with the players, not knowing if they’re frustrated or losing,” said Isabella, who stays with Stetler during each game. “Well, going into halftime Coach is usually upset. But he saw Coach coming and put his hand out and for that instant, (Currie’s) seriousness went away. “It took him out of his zone and he came back to reality. It really shows that this is more than just basketball.” Currie nodded. “I think (the players) are inspired by him,” Currie said. “What Ben just said about me, I think is a microcosm of how our kids are with him.” Stetler has become both an inspiration and a lesson for the players, Currie said. When they start to grumble about running a suicide or doing a drill, Currie says Stetler’s name and the players retreat. “You complain about basketball practice but you should be thankful you’re allowed to play basketball,” Currie tells the team. At the end-of-season banquet, Blanche Stetler watched as the entire team walked by and high-fived her son. She noticed one player wipe away a tear as he walked by. “Why are you crying,” she asked. “You don’t understand,” the player told her. “It’s an emotional thing.” She shook her head. “Don’t feel sorry for him. He’s happy,” she said. “If anything, you know when you have a problem - he doesn’t. He’s happy. We’re brought up to feel sorry for people like Tim but there’s nothing to feel sorry about.” The website for the Home News Tribune is http://www/mycentraljersey.com. Research Update Influencing Outcomes for Children Who Are Deaf-Blind with Cochlear Implants Kathleen Stremel The Teaching Research Institute at Western Oregon University has been awarded a Steppingstones of Technology Innovation for Children with Disabilities grant from the U.S. Department of Education for a new research project titled, “Influencing Outcomes for Children Who Are Deaf-Blind with Cochlear Implants.” Collaborative partners include the Cincinnati Children’s Hospital Medical Center and the Beach Center on Disabilities, University of Kansas. In addition, 15 state deaf-blind projects have written letters of agreement to participate: Arizona, Delaware, Georgia, Illinois, Kansas, Maryland, Massachusetts/Connecticut, Missouri, North Carolina, Nebraska, New Jersey, New York, Oklahoma, Oregon, and Pennsylvania. Project Staff Dr. Susan Wiley and I are the co-principal investigators, and I will serve as the project director. Dr. Susan Bashinski, formerly at the University of Kansas and now at Eastern Carolina University will assist in the development of assessment measures and analysis of videotaped data. External consultants will include Dr. Larry Irvin, Professor of Special Education in the College of Education at the University of Oregon, and Dr. Joe Spradlin, Professor Emeritus for the Department of Human Development and Family Life at the University of Kansas. Individual consultants with experience in deaf-blindness will serve as interventionists and trainers in a number of the states. Project Purpose Preliminary data on children who are deaf-blind and have cochlear implants indicate that there is a great deal of variability in the auditory perception, speech, and language outcomes they experience following cochlear implantation. There are also significant differences in the availability of appropriate intervention services for children (e.g., speech, language, and auditory training) and training opportunities for family members, and this likely has affected outcomes. Our study will address the following four research questions: 1. What effect does age-at-implantation have on child outcomes? 2. What effect does the duration of cochlear implant use have on child outcomes? 3. How do caregivers’ communication and interactive behaviors with their children differ before and after implantation? 4. What effect does speech and auditory training that incorporates individualized support prompts have on child outcomes? The objective of this project is to demonstrate that effective communication strategies in the context of daily home routines positively affect post-implant receptive and expressive communication and language outcomes for children who are deaf-blind. Methods The 3-year project will focus on children from 6 months to 8 years of age who have severe vision loss and severe/profound bilateral hearing impairment, a population that often has additional disabilities. We will test them before and after implantation using a number of receptive and expressive communication assessment tools. In addition, we will develop a systematic data collection system to examine the communication behaviors of caregivers and their children as they interact during naturally occurring routines. These strategies will include embedding receptive and expressive communication and language opportunities in routines and activities adopted by families. Products We will develop and disseminate a number of products over the course of the project. These will include (a) inventories of environmental sounds for home and school environments, (b) individualized assessment strategies, (c) fact sheets for parents and early service providers on effective intervention strategies in real-world contexts, and (d) training modules for service providers on auditory training, communication, and speech and language development. For Your Library Practice Perspectives: The Path to Symbolism National Consortium on Deaf-Blindness, August 2008. The Path to Symbolism describes the importance of early communication experiences for the development of symbolic communication in children who are deaf-blind. The publication is based on research and review articles by Susan Bruce (Boston College) and colleagues. Two recent studies by these researchers are highlighted. The first is on the use of gestures in children who are deaf-blind and the second is on the rate of intentional communication acts in children with severe disabilities, including deaf-blindness. Standard and large print versions are available on the NCDB website: http://nationaldb.org/NCDBProducts.php?prodID=62. Print and Braille copies are available free-of-charge from NCDB. Phone: 800-438-9376. TTY: 800-854-7013. E-mail: info@nationaldb.org. Web: www.nationaldb.org. Better Together: Building Relationships with People Who Have Visual Impairment and Autism Spectrum Disorder (or Atypical Social Development) Linda Hagood. Texas School for the Blind and Visually Impaired, 2008. This manual presents a relationship-based approach to teaching social skills to individuals who have dual diagnoses that include visual impairment and autism or Asperger’s disorder. It may also be helpful for teaching visually impaired people who have other types of atypical social development. Cost: $50.00 Available from Texas School for the Blind and Visually Impaired. Phone: 512-206-9427. Web: www.tsbvi.edu. Including Students with Severe and Multiple Disabilities in Typical Classrooms: Practical Strategies for Teachers, 3rd Edition June Downing. Paul H. Brookes Publishing Company, 2008. This text offers practical strategies for including students with cognitive, sensory, behavioral, and physical disabilities in regular classrooms. Topics include how to ensure access to core content areas, measure student progress toward state and national standards, ease transitions between grades and between school and adult life, write measurable IEP goals and objectives, and encourage peer-to-peer learning and support. Cost: $44.95. Publisher’s web site: www.pbrookes.com. Trends and Unresolved Issues Impacting Individuals who are Deaf-Blind Paper developed for the National Council on Disability by The American Association of the Deaf-Blind and Helen Keller National Center, 2008. This paper was written in response to a call by the National Council on Disability (NCD) for public input on emerging issues and trends affecting the lives of people with disabilities. Information gathered will be used in the development of NCD’s next annual progress report to the President and Congress. Available on the web: http://aadb.org/information/ncd/ncd_introduction.html Interpreting for Deaf-Blind Individuals: Annotated Bibliography National Task Force on Deaf-Blind Interpreting and DB-LINK, 2008. This document is intended for interpreters, interpreter educators, and deaf-blind people who are looking for books, articles, and videos about deaf-blind interpreting, communication, advocacy and rights, culture and community, support service providers (SSPs), and more. It was prepared by the National Task Force on Deaf-Blind Interpreting, in conjunction with DB-LINK at the National Consortium on Deaf-Blindness. Available on the web: www.nationaldb.org/ISSelectedTopics.php ?topicCatID=767. New Articles Chen, D., Klein, D., & Minor, L. (2008). Online professional development for early interventionists : Learning a systematic approach to promote caregiver interactions with infants who have multiple disabilities. Infants and Young Children, 21(2), 120-33. Clark, C., & McDonnell, A. P. (2008). Teaching choice making to children with visual impairments and multiple disabilities in preschool and kindergarten classrooms. Journal of Visual Impairment and Blindness, 102(7), 397-409. Peltokorpi, S, Huttunen, K. (2008). Communication in the early stage of language development in children with CHARGE Syndrome. British Journal of Visual Impairment, 26(1), 24-49. Reda, N. M., & Hartshorne, T. S. (2008). Attachment, bonding, and parental stress in CHARGE Syndrome. Mental Health Aspects of Developmental Disabilities, 11(1), 10-21.\ Conferences and Online Learning Opportunities Addressing the Needs of Students Labeled Deaf & Low Functioning, At-Risk, or Deafblind November 20-22, 2008 Houston, Texas This conference will include a wide range of sessions addressing classroom strategies, communication, behavior management, transition to work, and a variety of other topics. There will be opportunities to learn from national and state experts, to network with others in the field, and to learn about programs serving students and adults. For more information, contact Theresa Johnson at tjohnson@esc4.net or Hazel Semper at 713-744-6376, or register online at www.theansweris4.net. 2009 Texas Symposium on Deafblindness February 12–14, 2009 Austin, Texas This symposium is for parents, adult siblings, caregivers, educators, rehabilitation professionals, and interveners/paraprofessionals working with individuals with deaf-blindness ages birth to 22. Presentations will be offered by state, national, and international speakers including adults with deaf-blindness, family members, and experts in the fields of education and rehabilitation. Topics include educational strategies, transition, early intervention, and specific syndromes and conditions that cause deaf-blindness. For further information, contact Brian Sobeck (512-206-9225; BrianSobeck@tsbvi.edu) or visit www.tsbvi.org. Tangible Symbol Systems and Pre-Symbolic Communication Online Classes Two classes, developed by Charity Rowland and Philip Schweigert, on communication for individuals who are deaf-blind (or have other severe challenges), are now offered online by Oregon Health & Science University (OHSU). Tangible Symbol Systems provides instruction on all aspects of teaching an individual to use tangible symbols and also addresses the theoretical basis and research related to this approach. Pre-Symbolic Communication addresses the use of pre-symbolic means of communication by individuals who are not able to use symbols to communicate. For more information contact Carolyn Mills, OHSU Design To Learn Projects. Phone: 888-909-4030 or 503-494-2291. E-mail: tangible@ohsu.edu. Web: http://www.ohsu.edu/oidd/d2l/training. Perkins School for the Blind On-Demand Webcasts Perkins is a leader in the development of training models for educators who work with students who are visually impaired, with or without additional disabilities. Webcasts from their experts are now available on-demand at www.perkins.org/webcasts. Currently, there are webcasts available on the following topics: creating vocational portfolios, mealtime skills, and social skills. For further information, contact Marianne Riggio at 617-972-7264 or Marianne.Riggio@Perkins.org. Announcement New Personal Training Grant: Helen Keller Fellows “Extending a Legacy: Training Personnel to Serve School Age Children in Low Incidence Disabilities through the Development of Helen Keller Fellows,” is a collaborative effort to address the critical shortage of qualified personnel in low incidence disabilities, with a particular emphasis on deaf-blindness. The collaboration is between Western Oregon University’s Teaching Research Institute and master’s degree programs at nine universities (Boston College, East Carolina University, Hunter College of City University of New York, San Francisco State University, Texas Tech University, University of Alabama at Birmingham, University of Arizona, University of Southern Mississippi, and the University of Utah). The purpose of the program is to develop a cadre of geographically dispersed and networked teacher leaders who will be able to provide evidence-based practices and positively impact the broader educational system. Each participating university will nominate candidates who have been accepted into their respective graduate programs. Over the four-year grant cycle, it is anticipated that 36 Fellows will complete master degree programs and become teacher leaders in the field of deaf-blindness. To facilitate their education each Fellow will receive a $10,000 stipend. For more information, visit the project web site (www.helenkellerfellows.org) or contact Dr. Ella Taylor (503-838-8589, taylore@wou.edu). Subscription Information Paper copies of Deaf-Blind Perspectives are available free of charge to subscribers within the United States. Email subscriptions (provide notification that a new issue has been placed online) are available for International subscribers and others who prefer the online format. Deaf-Blind Perspectives welcomes and encourages your comments. We encourage you to copy and share information from Deaf-Blind Perspectives, but please provide appropriate citations. 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