I Linå'lå-ta OUR LIFE Administration on Intellectual Developmental Disabilities Tri-Agency Vol. 6, Issue 4 November 13, 2012 Pages 1-2 Self-Advocates Spread the Self-Advocacy Fire By Lynn Tydingco On September 22, the Guam Developmental Disabilities Council (GDDC) in collaboration with Guam CEDDERS, Guam Legal Services Corporation, and SiñA: Self-Advocates in Action, hosted Guam’s First Self-Advocacy Conference. What is self-advocacy? It is acquiring the knowledge, tools, and skills for individuals with disabilities to learn to speak out, and effectively communicate their needs to achieve self determination, inclusion, integration, and independence. Self-Advocacy is one of the nine areas of emphasis addressed in the GDDC Five-Year State Plan. The Self-Advocacy Conference was coordinated and facilitated by Guam’s Self-Advocates! Opening remarks were given by Rosanne Ada, GDDC Executive Director. Keynote speaker was Roland Taimanglo, an accomplished Self-Advocate. Roland shared a true to life account of how he acquired his disability. He captured the audience’s attention with his many challenges that took him successfully through the legal system. Roland’s efforts not only benefited him, but so many others in our disability realm: accessible sidewalks, accessible parking, and accessible ATM banking. Roland embraced the conference theme and encouraged all to NEVER GIVE UP, because “SiñA Ta Chogue!” (We Can Do It!). Testimonies from other successful Self-Advocates were presented during the course of the conference including Maria Bontogon and Molliann Campos, two Youth Self-Advocates, and Evelyn Duenas, Gabriel Lau, and Maylynn Fejeran, seasoned Self-Advocates. A brief presentation on Self-Advocacy and Guam’s benchmarks in the Self-Advocacy movement were given by Lynn Tydingco, DDC Chairperson, Self-Advocate, and SiñA President & Facilitator. Matt Wolff, Guam Legal Services Attorney, discussed the rights of individuals with disabilities and their families. Leone and Michelle Rohr conducted a powerful and insightful profiling using Person Centered Planning. The audience felt connected and participated in the exercise. The theme of this year’s conference was “SiñA Ta Chogue”, “We can do it!” Great words to live by! Photos with captions: Erlinda Tydingco, (on stage in red) Chairperson of the Guam Developmental Disabilities Council and President of SiñA: Self Advocates in Action, delivers welcoming remarks during the 2012 Self-Advocacy Conference held on September 22 at the Marriott Resort Hotel. Parent Leone Rohr (Standing, right) and her daughter Michelle (standing, left) teamed up to present Person Centered Planning concepts as a final presentation of the conference. “The other kids were just jealous they didn’t have a cool helmet like I did!” shared Molliann Campos, JFK sophomore, who brought personality and humor to the floor, talking about combatting perceptions of wearing a protective helmet to school. The Simon Sanchez Sharks SiñA team took in the events of Guam’s first Conference on Self-Advocacy. (L-R): Beth Perez, Principal; Paula Bontogon and Maria Bontogon, students; Jim Healy and Audrey Perez, Advisors, Ginger Porter Guam CEDDERS; SiñA advisor & mentor; Lynn Tydingco, SiñA President; and Lin Bontogon, parent. Page 3 Two High Schools Organize First SiñA Youth Chapters By Ginger Porter Simon Sanchez High School took the first step to establish a SiñA youth chapter after meetings were held in September involving youth member Maria Bontogon, SiñA President Lynn Tydingco, Principal Beth Perez and Ginger Porter of Guam CEDDERS. Jim Healy and Audrey Perez, two new advisors, joined Principal Perez at the First Conference on Self-Advocacy to check out the spark and fire of self-advocacy. Since then, Ms. Bontogon has been recruiting members. On November 5, Lynn and Andrew Tydingco, SiñA officers, met students at JFK High School to kindle the self-advocacy spirit among the Islanders and their teachers. Nearly 25% of the 80 students gathered are interested in starting the new school organization. They will meet next week to address the nuts and bolts of bylaws and officers for their organization. Both school organizations will become a student chapter of SiñA, a 501(c)3 organization, providing them with opportunities for fund raising, sponsorship, and grants. Each youth chapter will have projects and business unique to their school setting and the student membership. In both organizations, students with disabilities will hold leadership roles. SiñA is a member organization of SABE, Self-Advocates Becoming Empowered, a national self-advocacy organization, which has close ties with the National Youth Leadership Network and the Autism Self-Advocacy Network. This network of organizations holds potential for youth to participate in and become aware of national issues as well as those within their local surroundings. SiñA youth have already taken active roles in “SiñA ta Kanta,” a music concert held in July, and the recent Self-Advocacy Conference. These key efforts provide opportunities for youth to develop confidence and skills in leadership to address issues important to them. Photos with captions: Approximately 80 JFK Islanders sat in on a presentation by Andrew and Lynn Tydingco, SiñA officers, about the merits of self-advocacy and a student self-advocacy chapter. SiñA youth member Gian Magana (seated right) interacted with Lynn Tydingco, SiñA President, to explain the differences of advocacy and self-advocacy to other JFK students present at an informational meeting for establishing SiñA Youth chapters. Page 4 Council Supports Self-Advocacy By Rosanne Ada, Executive Director , Guam Developmental Disabilities Council The Guam Developmental Disabilities Council (GDDC) is committed to supporting Self-Advocacy as declared during the March 28-30, 2012 Self-Advocacy Summit in Honolulu, Hawaii. The Council has prioritized Self-Advocacy in its Five-Year State Plan for FY 2012-2016. To support this initiative, the Council provided the opportunity for SiñA (Self-Advocates in Action) to take the lead in coordinating and facilitating the 2012 Self-Advocacy Conference. “SiñA Ta Chogue” which means “We Can” Conference was held on September 22 at the Marriott Resort. Over 90 self-advocates and family members attended this conference. Be on the lookout during the upcoming months as SiñA may be recognized as the Statewide Self-Advocacy Organization on Guam. Self-Advocacy is exemplified in individuals with disabilities when they know their rights and responsibilities as citizens, make their own choices and decisions, and speak up for themselves. People develop these skills as more opportunities become available for making choices and decisions. As they progress in making choices and decisions, they will get better at speaking up for themselves and doing things on their own. This will help them at problem solving and doing things on their own initiative. In a study of individuals with developmental disabilities who belonged to self-advocacy groups, researchers found that: (1) Individuals who belonged to self-advocacy groups made more choices on their own than those who were not members; and (2) Self-advocacy groups helped individuals gain more independence by making choices and decisions. Photo with caption: L-R: Rosanne Ada, Executive Director, Guam Developmental Disabilities Council (GDDC), Erlinda Tydingco, GDDC Chairperson, and Roland Taimanglo, self-advocate and keynote speaker, take a short break for a photo during the 2012 Self-Advocacy Conference held on September 22. Text in colored box: How to Find Out About Self-Advocacy Groups Within our community, there are groups of individuals with developmental or other disabilities who get together to talk about rights, responsibilities, and speaking up for themselves. Most agencies and non-profit entities have a Board, Council and Advisory Committees. For more information regarding training, workshops, and conferences on self-advocacy, contact: Guam Developmental Disabilities Council, 130 University Castle Mall, Suite l7, Mangilao, Guam 96913 (671) 735-9127/8, (671) 734-9121 Email: rosanne.ada@gddc.guam.gov or marie.libria@gddc.guam.gov Page 5 My Journey To Employment By Gerard A. Cruz What do watermelon, talaya and meeting two of the world’s leaders in blindness advocacy have in common? As I began my blind rehabilitative training at Ho’opono in Honolulu, Hawai’i, these three were part of my most memorable experiences in September 2012. When I first learned from my vocational counselor that I would be leaving for Ho’opono on September 5, this year, I was excited. I had three weeks to prepare. I wasn’t worried at all. I was ready to go. I last worked as a tour guide in 2004; a job that I loved. This trip would take me one step closer to being employed and once again being able to provide for the needs of my family. On the Honolulu side, Ho’opono social worker Gavin Abe was there to meet me at the airport. It was my first time to travel independently as a person who is blind. Even though I had just met him, his warm welcome made me feel at home. I start the day with a morning assembly with roll call of students and staff, and announcements of the day’s and week’s happenings. I have classes Monday through Friday in orientation and mobility; woodshop; consumer home management; technology; Braille; and a group interaction session called BOBB, or the Business of Being Blind. In addition to classes, we also have time for a little fun. Ho’opono has an annual tradition of a watermelon eating, seed-spitting competition. At first I was hesitant to join, but then decided to let go and just join in on the fun. I want to not only learn in class, but to fully take part in whatever activities they have. I want to show Guam’s Hafa Adai Spirit! I am proud to say that Guam placed third that day. Another Ho’opono tradition is called “Da Kine.” This is where every morning at the end of assembly, someone, staff or student, is chosen to share their thoughts or views on whatever topic they like. One week into the program, my name was selected. I talked to the assembly about the concept of the talaya and how it relates to life. We cast our nets wide, we take only what we need, we use what we take, and no matter how much or how little, we share what we have. I explained that I am here at Ho’opono to cast my net wide, to catch as much knowledge as I can, and bring it home to share. My decision to come to Hawai’i to learn to live more independently is leading from one great experience to another. On Guam, while looking on the internet for resources for the blind community, I learned about the largest and strongest advocacy organization for the blind in the world, the National Federation of the Blind (NFB), This past weekend I had the distinct honor of meeting Dr. Fred Schroeder and Ron Brown, two of the Federation’s Vice Presidents, at this year’s NFB Hawai’i State convention. I got to speak with them in person at a dinner reception, and then again with Dr. Schroeder when he visited the Ho’opono campus to give a leadership training seminar. Each day here is different, where I look forward to learning something new. The friends I have, both among the students and the staff, are a great source of encouragement and support to me. If you have been thinking about trying the Ho’opono experience, all I can say is, “A journey of a thousand miles begins with a single step.” Take that first step to independence. A new world awaits you! If you would like to know more, contact Benito S. Servino, DISID Director at 475-4646 or email benito.servino@disid.guam.gov. If you have any questions about my experiences here at Ho’opono, email questions to: gerardathoopono@gmail.com Page 6 Video Relay Service Now Available By Carla Torres The Guam System for Assistive Technology (GSAT) is ecstatic to announce that it can now offer demonstrations of Video Relay Services (VRS) to the island community. It was 3 years ago that GSAT’s Carla Torres made the initial attempts to bring video relay services to its Demo Center and was told “sorry, funding for VRS on Guam is not available.” Even willing to find and put up the funding, the response received was still a “sorry, it is not possible as of yet.” Those resounding no’s are but a thing of the past. Thanks to the help of Chris Pangelinan, president of the Guam Association of the Deaf, and Yenter Tu and U. Sung Chung, Z Technology-CSDVRS, LLC, VRS is now available at GSAT. Several island residents too are enjoying this service in their homes. VRS is a form of Telecommunications Relay Service (TRS) that allows persons with hearing disabilities who use American Sign Language (ASL) to communicate with voice telephone users through video equipment, rather than through typed text. The VRS caller, using a television or a computer with a video camera device and a broadband (high speed) Internet connection, contacts a TRS operator called a “communications assistant (CA)” who is a qualified sign language interpreter. The VRS CA then places a telephone call to the party the VRS user wishes to call. The VRS CA relays the conversation back and forth between the parties in sign language with the VRS user, and by voice with the called party. No typing or text is involved. A voice telephone user can also initiate a VRS call by calling a VRS center, usually through a toll-free number. VRS offers several features not available with the older TTY technology and other text-based forms of TRS. For instance, because consumers using VRS communicate in sign language, they are able to more fully express themselves through body language and facial expressions. Moreover, a VRS call flows back and forth naturally like a telephone conversation between two hearing persons. It takes place much more quickly, and the parties can interrupt each other. Currently, around ten providers offer VRS. However, it is Z Technology-CSDVRS, LLC that extends its services to Guam residents. Like all TRS calls, VRS is free to the caller. VRS providers are compensated for their costs from the Interstate TRS Fund, which the Federal Communications Commission (FCC) oversees. The FCC mandates that VRS providers must answer 80 percent of all VRS calls within 120 seconds. VRS providers must also offer the service 24 hours a day, seven days a week but cannot be used as an interpreting service as it is a type of phone call. To learn more about VRS or to experience a live demonstration of this awesome technology, please call GSAT at 735-2490/1. Photos with captions: Chris Pangelinan, president of the Guam Association of the Deaf, has a phone conversation with U. Sung Chung in Colorado on a video phone from Z Technology. Chris Pangelinan shows a thumbs-down to the outdated TTY technology as U. Sung Chung laughs in surprise that GSAT still has one on hand. As Chris Pangelinan (left) looks on, Carla Torres (right), Assistive Technology and Special Projects Program Coordinator, has a conversation with GSAT Advisory Council member Barbara Johnson using Video Relay Services provided through the Z Technology’s Z4 software. Page 7 Guam CEDDERS Wins 2nd Annual White Cane Relay By Ginger Porter An early morning walk took on new meaning for members of teams participating in the 2nd Annual White Cane Safety Day Relay, an activity closing out October’s focus on educating the community on the use of white canes by persons with vision loss. This year, the Guam CEDDERS team prevailed over other teams in the challenge to navigate the mile long course, using only the 10 – 2 tap guide of a white cane, and completing the relay course in 53 minutes, 47 seconds. RIM Architects closed in 51 seconds behind, followed by last year’s champion team from DISID. Methodical practice over speed often created better outcomes for teams. A few participants became disoriented and needed verbal cues to regain orientation to the clockwise path around the Paseo Stadium. Pacific VIP (Vision Instruction Project) scholars, sponsor FHP-Takecare, and transit provider Kloppenburg Enterprises Inc. finished in successive order. Participating transit drivers gained a new awareness of the needs of their customers. As some teams members related, it was an eye-opening experience, generating respect for those who independently navigate with the white cane. Photos with captions: SiñA members presented the winning Guam CEDDERS team with a plaque and a BIG Number 1! (L-R): Josie Cortez, SiñA Member, Lynn Tydingco, SiñA President, Sean Lizama, Guam CEDDERS, Julie Cruz SiñA Member, Keith Villaluna, Guam CEDDERS, Candice Perry, SiñA Member, Evelyn Duenas (seated), SiñA Member, Vicky Ritter, Guam CEDDERS, Dr. Felicity Grandjean, Guam CEDDERS, and Carla Torres, Guam CEDDERS. Guam CEDDERS Team Members not shown: Jeff Pinaula, JJ Mendiola, and Dr. Nieves Flores. A sponsoring FHP Takecare Team Member crossed the finish line with a cheer and big smile. JJ Mendiola, Guam CEDDERS Team Member, and Ben Servino, DISID Director, tap their way to the finish line. Boxed Text Acknowledgements: I Linå'lå-ta is a newsletter published and funded through an Administration on Intellectual and Developmental Disabilities (AIDD) Tri-Agency partnership between the Guam Developmental Disabilities Council (Guam DDC), Guam Legal Services Corporation - Disability Law Center (GLSC-DLC), and the University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (UOG CEDDERS). Comments may be sent to: Guam CEDDERS, Office of Academic & Student Affairs, University of Guam, UOG Station Mangilao, Guam, 96923 Phone: 735-2480/1 Fax: 734-5709 TTY: 734-6531 Email: terrie.fejarang@guamcedders.org Guam DDC Executive Director: Rosanne Ada GLSC-DLC Director: Harold Parker, Esq. UOG CEDDERS Director: Heidi San Nicolas, Ph.D. Editors: Ginger Porter, Terrie Fejarang Layout & Design: Sean Lizama This issue of I Linå'lå-ta was made possible by contributions from the following individuals: Rosanne Ada, Gerard Cruz, Cecilia “Lee” Cruz, Ginger Porter, Carla Torres, & Erlinda Tydingco. Alternative formats (e.g. Braille, large print, audio tapes, or electronic file) of I Linå'lå-ta will be made available upon request. Please contact Margaret Johnson at 735-2477 (v) or 734-6531 (TTY), or email: margie.johnson@guamcedders.org for more information. The University of Guam is an equal opportunity employer and provider. Page 8 OPENING DOORS: Universal Flight …The Technology Race Is On! By Cecilia “Lee” Cruz Join me as I consider the world of possibilities in deciding what tools to choose for my everchanging tool kit of assistive technology (AT) as I transition into the added dimension of Braille literacy and accessibility. About a hundred years ago my Dededo Jr. High School language arts teacher, Daniel McCauley, told our class, “Never let anyone tell you that you only have two choices. There is always an alternative.” He is one of my favorite teachers, even to this day. In a college economics class, my professor told our class, “Never make a decision based on what you have already invested; only on what you stand to gain from that moment on.” Overloaded and heading for a “C” in that class, I took his advice and withdrew later that week. I still keep his words to heart. Yet another college professor, this time in American Foreign Policy, told our class about his theory of “the unknown factor.” This is when technological developments change the way we perceive the world and make decisions. All three lessons converge and guide me through the decisions I will make over the next few months as to the kind of AT I will choose for myself. As a person who has had low vision for the better part of the past 20 years and is now blind, I had relied on PC-based screenreading software. The decision was which to use: JAWS (Job Access With Speech), Window Eyes, or the newcomers System Access To Go (SATOGO) and Non-Visual Desktop Accessibility (NVDA). Now added to the mix of options is the built-in Windows 8 Narrator and the Mac and iDevice Voiceover screenreaders. I had always opted for JAWS because I had become accustomed to its keyboard commands. From JAWS 3, where I started, into the JAWS 12 that I now use, accessibility has GRADUALLY IMPROVED, WHILE ITS PROHIBITIVE $1,000 PLUS PRICE TAG unfortunately HAS NOT. Don’t get me wrong, I still love my JAWS. Will I explore Windows 8 Narrator and possibly also invest dollars and time in Mac Accessibility with Voiceover? In a heartbeat. Let the technology competition begin . . . and the computer user win! The message of universal design is coming into favor. Currently, I am taking Braille Literacy courses with The Hadley School for the Blind. I am still painstakingly inching my fingers through sentences of elementary composition. Very soon, I hope to be one of the Braille literate, using what I hope will then be affordable and portable, refreshable Braille screens, not only for my PC and Mac, but also for my smart Phone. I say thank you to the power of one; all the many individuals who have devoted their lives to make this AT wish come true. Yes, you heard right; I will continue to keep both PC and Mac in my AT tool kit. Remember the McCauley rule. You had better believe I will opt for the technology that allows me to walk into any computer store and buy something off the shelf and take it home, turn it on, and have it work for me. NO more waiting for a sighted or highly technical friend to help me set things up. Gas and go blind computer access . . . that‘s what I’m talking about. That’s where my dollars will be. We’ve come a long way BABY! As so aptly put by Mr. Buzz Lightyear “To infinity and beyond!” Come aboard, it promises to be a great universal flight! To learn more about the latest assistive technology call GSAT at 735-2490.