Page 1-2 of 8 I Linå'lå-ta OUR LIFE Vol. 4, Issue 4 November 10, 2010 Administration on Developmental Disabilities Tri-Agency GET READY! Even though there is a “typhoon season,” as residents of Guam, we know that typhoons can hit the island at any time. Some years we have several weather storms come to our region that stay a safe distance away, while other years we have direct hits to the island, which results in massive devastation. Guam has been lucky these past several years as we have not had any serious direct threats or hits. But we know that supertyphoons do not come on any particular schedule and that “our number” can come up at any time. So — we always have to be prepared. Long time residents know the drill: listen to the radio or TV for regular storm updates. Make sure you have a food supply that can last a few days and doesn’t need refrigeration. Make sure you have a safe and adequate water supply for both drinking and personal needs. Make sure you have candles, flashlights, batteries, and if possible, a generator to supply power when the island’s electricity goes down. Make sure you have your important documents in a safe, secure, and easily accessible place. Make sure you are in a safe structure during the storm. Photos with captions: (L-R) Annie Manglona watches as Terrie Fejarang demonstrates how to operate a “smashlight” at the Guam CEDDERS display table during the Emergency Preparedness outreach activity held at the Agana Shopping Center on September 25. The event was coordinated by the Department of Homeland Security. "Pripara Hao, Guam CEDDERS, Emergency Preparedness Guide for Persons with Disabilities" For a copy of the Guam CEDDERS Emergency Preparedness Guide for Persons with Disabilities contact Ginger Porter at 735-2369. People with disabilities have to be even more prepared and organized. Adequate medication and medical supplies that can last several days need to be on hand. Eye glasses, hearing aids, and mobility aids need to be checked to make sure they are working properly. For individuals who need a special support system, planning is crucial. Medical treatment plans need to be carefully thought out. Family members or close friends need to know what kinds of supports are needed. If these helpers are not available, the individual should notify their mayor, caseworker, or service organizations such as the Red Cross, Catholic Social Services, Guma’ Mami, or the Salvation Army that their assistance is needed. Typhoons are not the only kind of disaster that can hit. The Guam Department for Homeland Security has developed preparedness plans for other types of emergencies such as tsunamis, earthquakes, floods, and chemical disasters. The Center for Excellence in Developmental Disabilities Education, Research, and Service (Guam CEDDERS), in collaboration with Homeland Security, has developed an Emergency Preparedness Checklist and an Emergency Preparedness Guidebook to help people with disabilities and their families plan for these disasters. These products may be obtained by calling Guam CEDDERS at 735-2477, or by visiting the Guam CEDDERS Emergency Preparedness website at www.guamcedders.org/priparahao. Whatever the disaster, it helps to be prepared as much as possible. Make use of the available resources and develop personal preparedness plans. These tips will help to minimize the effect of emergency situations and allow for fast recovery to your normal routine. Three Photos with the following caption: Two 45 second video ads that focus on emergency preparedness recommendations for individuals with disabilities were recently produced by Guam CEDDERS. Participating in the video productions were left photo: (L-R) Bull Fuppul & Lee Cruz; middle photo: Lisa Ogo; right photo: (L-R) Jay-lynn Mendiola & Linda Leon Guerrero. Advertisement: Pripara Hao GUAM CEDDERS EMERGENCY PREPAREDNESS I’m Prepared! I’ve made my Emergency Plan. • I know what I need help with. • I have family & friends in my support network. • My family & friends have my plan. • My family & friends know how to assist me. • I have a list of Emergency Contacts. • My medicines & information are listed. • My medical providers are listed. • I have a communication plan. • I have a back up power source for my chair. • I have a GO-KIT to meet my special needs. • I’M READY. • I’M PREPARED. Photo of a man in his wheelchair Page 3 Opening Doors: We, the Blind! by Cecilia “Lee” Cruz (photo) You know how the United States Constitution starts with “We, the People of the United States of America, in order to form a more perfect union...” Well, this is what inspired a group of friends who happen to be blind to call ourselves, “We, the Blind!” It is a powerful reminder to ourselves and others that we are equal members of society. “We, the Blind!” is a subgroup born from the source group, “New Vision, Guam!” a support and advocacy group for those who are blind or with low vision. The subgroup meets about every two weeks to learn and improve our skill in the use of Braille, screenreading computer software JAWS (Job Access with Speech), and to fine tune the use of our white canes to travel independently. Tavita Fa’asuamalie, Lisa Ogo, Jesusinio Delizo, Tracy Fejeran and I are the intrepid sojourners and hearty adventurers. Where have we gone? I’d like to say “to infinity and beyond . .,“but that is yet to come. Ocean swims, skydiving, gourmet barbecuing, ballroom dancing, and mastering Facebook are some of our goals. We’ll make it look so easy we could do it with our eyes closed. But before we can do the seemingly impossible to most, we must do the necessary. Grocery shopping, picking up medicine prescriptions, banking, going to Sunday Mass or prayer service, and attending social and recreational activities are just a few of the necessities of life on this lovely island we call home. We each bring to the table what we know and what we would like to learn to do independently or with more skill. Tracy, who has been blind for four years, is learning to read and write Braille for the first time, but shares with the group her own experiences and adaptations to daily living. Tavita serves both as student and teacher as he shares his skills and knowledge gained at BLIND, Inc., one of the top three Schools for the Blind in America. Jesusino received his training in the Republic of the Philippines and is our resident “Contracted Braille Tutor” while learning from the group orientation to Guam locations. Lisa, who received her training in Florida, is learning to travel independently with other blind people and also serves as the diplomat among us. Basically, we help each other to realize a more independent lifestyle and have some fun in the process. Where have we been? We’ve lunched at King’s in Tamuning and walked to GPO for some afternoon shopping. We have met at GSAT (Guam System for Assistive Technology) in Mangilao to learn what assistive devices are available to help us achieve a higher level of independence. Future plans will take us to Department of Administration, Treasurer of Guam to pay bills and buy Transit tickets, and to the post office to mail letters or packages, and do safe street crossings. It is important for us to travel independently in public in order to educate and increase awareness in our island community. Although we are all blind, our individualized needs are quite different. Working in a smaller group makes it easier to identify and address these needs. As membership in “New Vision, Guam!” grows, we hope to organize more pods of friends who can also work toward this mutual goal of independent living. “We, the Blind!” is fortunate to have enlisted the help of Kathy Millhoff, who is fluent in Braille. She has volunteered her time and expertise in this Braille literacy effort. Please help us pass the word along. Contact Lynn Tydingco with “New Vision, Guam!” for updates on our upcoming meetings and activities. We are at 788-3534 and www.newvisionguam@yahoo.com. Photo with caption: (L-R) Lisa Ogo gives tips on reading Braille to Tracy Fejeran during a meeting of “We, the Blind!” at the GSAT Center while Tavita Fa’asuamalie (background) listens in. Page 4 Guam Team Presents at National Conference by Evelyn Duenas & Ginger Porter WOW! That is how we summarize our experience at the 2010 SABE (Self Advocates Becoming Empowered) National Conference in Kansas City, Missouri held on September 23 – 26. We spent three and a half days with nine hundred other registrants from all walks of life, trying to absorb all of the activities and presentations. It was the first time we had experienced a conference this big run by persons with disabilities, for persons with disabilities. It was awesome. The coined phrase, “Nothing about us, without us,” was truly representative of the entire conference. We found the conference educational and motivating, easy to relate to, and loaded with information and helpful tips on advancing self-advocacy in our community. Each breakout session required a presenter with a disability, making the topics much more relevant. One of our favorite highlights was a panel session facilitated by Roberta Gallant, who impressed us as she addressed the closure of institutions. Labeled as a person with an intellectual disability, Roberta has made choices for herself and pursues her dreams. We conducted a workshop entitled, “Yes! Training Delivery Style Affects Self Advocacy Outcomes,” which focused on the effectiveness of changing the delivery style of our self-advocacy curriculum. A simple change in approach, which consists of adding a personal selfadvocacy project, assigning self-advocate mentors, and training self-advocates to facilitate the training, yielded change in the lives of our self-advocates, as was reflected in our personal stories of action. Aside from the 58 break out sessions encompassing advocacy, self-advocacy, employment, services, housing, and health, we were inspired by meeting with the Administration on Developmental Disabilities Commissioner, Sharon Lewis and DD State Council Chairpersons Sherri Cooper and Mark Ohrenberg. Funding for our attendance at this conference was graciously provided by Guam CEDDERS and a generous scholarship from the Association of University Centers on Disabilities. Additional support was provided through a fundraiser planned and hosted by several self-advocates. Special shout outs go to Lee Cruz, Lynn, Andrew, and Rowena Tydingco, Noel Lazaga, the staff and management of Julian’s Karaoke and Guma Mami, Inc. Most of the individuals we met contribute to their community, either as motivational agents of change, partners in policymaking, members of DD Councils, or as self employed or employed community members. It was clear that much of their success was generated from the opportunity to make choices, voice their concerns, and become an integral part of the community. Truly, all it takes is a system of individualized supports and a bit of action and self-advocacy. We can all make our dreams happen. Where better to live a dream, than in this paradise that we call home. Photos with captions: Evelyn Duenas joins Alabama and Washington state team members for a photo at the 2010 SABE National Conference. Members of Missouri People First (bottom) and New Jersey Self Advocates (top) proudly display their flag entries as they sing “We are the World” with 900 voices strong. Page 5 GOAL-AT Loan Recipient by Carla Torres Ana Ishmael first heard about the Guam System for Assistive Technology (GSAT) Assistive Technology Conference from our partners at the Guam Legal Services Corporation Disability Law Center. She decided to check it out and ended up learning that AT can play a vital and positive role in her life. Ana has retinal detachment, a disorder of the eye in which the retina peels away from its underlying layer of support tissue. This condition has resulted in blindness of her right eye and low vision in her left eye. Ana met with Carla Torres, GSAT’s AT Specialist, who demonstrated AT devices that would provide her an adequate level of magnification in order to read print and give her access to a computer. Through this demonstration, Ana was able to make a decision about which AT would best meet her needs. She decided on a portable handheld video magnifier and a computer software program that allowed her screen magnification and reading. Carla helped Ana to explore funding resources that could help to pay for the assistive technology Ana needed. Ana decided to apply for the Guam Options for Alternative Loans-Assistive Technology (GOAL-AT) program. This program is managed by GSAT and makes AT affordable for individuals with disabilities and their families by financing the AT for them at a low interest rate of 2.125%. For a laptop computer with the magnifier/reader software, an all-in-one printer, and a handheld video magnifier, Ana would have had to spend $2,644.95 out of pocket; not an affordable amount for most. With the GOAL-AT program, Ana was able to get all this equipment for $78.21 per month for 3 years. Ana now uses her equipment in all aspects of her life and is overjoyed with the amount of independence it has provided her. With her handheld magnifier, she is able to verify receipts and read food labels at the grocery store. She can select items off a menu at the restaurant. She even uses this device on the sales floor at her job. With her computer, she is able to access information on the internet and communicate through email with greater efficiency than ever before. If you would like to learn more about how the GOALAT program could benefit you or a loved one, please call GSAT at 735-2490/1, stop by our office at House 19 Dean’s Circle, UOG campus, or visit us on the web at www.gsatcedders.org. Photos with caption: Ana Ishmael demonstrates the use of her new assistive technology devices including a handheld video magnifier, a laptop computer, and magnifier/reader software. Page 6 Assistive Technology Corner by Carla Torres Assistive technology used to be regarded as rehabilitative or prosthetic in nature, with the ultimate goal of providing individuals with disabilities the means for maintaining independence and the ability to earn a living. For infants and children, the use of assistive technology was atypical because they are dependent upon adults and to expect them to earn a living would be absurd. Today, we realize how crucial it is to nurture their developmental capacities so that they can experience their own selves, their environment, and the person within in them. This, in turn, leads to growth and learning. Today, we regard the purpose of assistive technology as increasing, maintaining, or improving one’s functional capabilities. Children with disabilities should be given the means to access developmentally appropriate experiences they would not otherwise have because of their disabilities, like playing with toys or reading books. Assistive technology can play a big role in giving them this access. Moreover, it doesn’t always require high tech gadgets to accomplish such. In fact, many assistive technologies can be made with household, inexpensive knick knacks. Let’s look at a few. Grippers Gripping objects with smaller diameter handles like pens, spoons, and toothbrushes can be difficult for people who have fine motor disabilities. Some household items that can be used to fatten the grips on objects to make it easier to hold are: prescription medicine bottles, 35mm film containers, tennis balls, whiffle balls, polymer clay, sponge hair rollers, and tubular foam pipe insulation. Velcro Bracelet With elastic and Velcro, a bracelet can be created to allow for grasping a favorite toy. To make this, sew a one-inch piece of hook Velcro to one end of elastic and a one-inch loop of Velcro to another end. Sew a two inch piece of hook Velcro at the middle of the elastic. Stick a piece of loop Velcro onto the toy that the child wishes to play with. Place the elastic bracelet around the child’s hand with the two-inch hook Velcro on the palm side. Attach the toy to the bracelet. If you would like to learn more about low cost Assistive Technology solutions, please call GSAT at 735-2490/1 or stop by our office, House 19 Dean’s Circle, UOG Campus. Photos with captions: A pencil with a tennis ball gripper, a pencil with a store bought gripper. A babies hand wearing a Velcro bracelet with an attached rattle. Ana Ishmael demonstrates the use of her new assistive technology devices including a handheld video magnifier, a laptop computer, and magnifier/reader software. Page 7 “R-Word” Eliminated from Legislation with Passage of Rosa’s Law One family’s effort to change the usage of a negative term has resulted in the passage of a law by the United States Congress. Bill S. 2781, also known as “Rosa’s Law,” was signed by President Barack Obama on October 5, 2010. Introduced by U.S. Senator Barbara A. Mikulski (D-Md.), the law mandates that the terms “mental retardation” and “mentally retarded” be eliminated from federal education, health, and labor laws. The term “an individual with an intellectual disability” is to be used instead. The work that led to the passage of this legislation started with a Maryland family. Nina Marcellino, a mother of four children, including Rosa, a nine-year old with Down Syndrome, who learned that her daughter was labeled the “R-word” in school. Organizing other parents, she led the effort to have a change in terminology in Maryland state law. At the public hearing for the Maryland bill, Rosa’s 11-year old brother, Nick, testified that, “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.’” “Respect, value, and dignity – everyone deserves to be treated this way, including people with intellectual disabilities,” said Dr. Timothy P. Shriver, Chairman and CEO of Special Olympics. “The President’s signature and the unanimous support of both the House and Senate show that our elected officials understand and embrace this ideal. I congratulate Sen. Mikulski and Sen. Enzi for their vision and sensitivity to people with intellectual disabilities everywhere.” Advertisements: 1. PLEASE SPREAD THE WORD! Information for this article was obtained from a press release from U.S. Senator Barbara A. Mikulski and the Special Olympics home page. SPREAD THE WORD TO END THE WORD Our language frames how we think about others. Help eliminate the use of the R-word in everyday speech. Photo of Male child. Photo by Jessica Marcotte Spread the word header [Online Image] 2010. Retrieved July 26, 2010, from http://www.r-word.org/ 2. Get Informed! Log on to: www.r-word.org to find out more I Linå'lå-ta is a quarterly newsletter published and funded through a Tri-agency collaborative partnership between the Guam Developmental Disabilities Council (Guam DDC), Guam Legal Services Corporation - Disability Law Center (GLSCDLC), and the University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (Guam 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: Manuel Cruz GLSC-DLC Director: Harold Parker, Esquire Guam CEDDERS Director: Heidi San Nicolas, Ph.D. Editor: Terrie Fejarang Layout & Design: Sean Lizama This issue of I Linå'lå-ta was made possible by contributions from the following individuals: Carol Cabiles, Cecilia Cruz, Evelyn Duenas, Terrie Fejarang, Ginger Porter, & Carla Torres. Alternative formats (e.g. Braille, large print, or audio tapes) of I Linå'lå-ta will be made available upon request. Please contact Margaret Johnson at 735-2477 (v), 7 34-6531 (TTY), 734-5709 (fax) or email: margie.johnson@guamcedders.org for more information. The University of Guam is an equal opportunity employer and provider. Page 8 Advertisement: Ballot & ballot box clip art Your vote is your voice. Guam Legal Services Corporation - Disability Law Center (GLSC-DLC) wants to hear what your voting experience was like! You have the right to: • access your polling place • cast a secret ballot • have a family member, friend or caregiver of your choice accompany you into the voting booth • request assistance marking and casting your ballot Some common problems at polling sites on Guam and around the nation deal with accessible parking, pathways, entrances, doors and handles, and voting areas. Let us know how your polling site measured up. If you have questions about voting and/or disability related problems at the polls, you may file a complaint with GLSC-DLC at 477-9811, or email us at information@guamlsc.org. Advertisement: SAVE THE DATE! GSAT Conference & Fair, March 18th & 19th, 2011. For more information call Carla Torres at 735-2493 or send an e-mail to carla.torres@guamcedders.org Upcoming Events NOVEMBER 2010 Nov 5 Capacity Building Strategies for Improving Post-Secondary Success for Students with Disabilities - Part I, Teaching Strategies, 10:00am-11:30am, GCC Multipurpose Room Nov 6 The Ins and Outs of Special Education, 9:00am-11:00am, GSAT House 19 Dean’s Circle Nov 9 Interactive Parent Workshop (Childhood/Adolescent Depression), 6:00pm-8:00pm, House 30 Dean’s Circle Nov 19 Capacity Building Strategies for Improving Post-Secondary Success for Students with Disabilities - Part II: Universal Design, Time TBA, UOG Nov 20 The Ins and Outs of Special Education, 9:00am-11:00am, Lagu Youth Resource Center, Dededo Nov 23 Interactive Parent Workshop (Suicidal Adolescents: Prevention Tips for Parents), 6:00pm-8:00pm, House 30 Dean’s Circle DECEMBER 2010 Dec 4 The Ins and Outs of Special Education, 9:00am-11:00am,Venue TBA, Call 735-2490/1 or 735-9127 for more information. JANUARY 2011 Jan 15 The Ins and Outs of Special Education, 9:00am-11:00am,Venue TBA, Call 735-2490/1 or 735-9127 for more information. Jan 29 The Ins and Outs of Special Education, 9:00am-11:00am,Venue TBA, Call 735-2490/1 or 735-9127 for more information. FEBRUARY 2011 Feb 12 The Ins and Outs of Special Education, 9:00am-11:00am,Venue TBA, Call 735-2490/1 or 735-9127 for more information. Feb 26 The Ins and Outs of Special Education, 9:00am-11:00am,Venue TBA, Call 735-2490/1 or 735-9127 for more information. Advertisement: Learn more about Emergency Preparedness at: www.guamcedders.org/priparahao