I Tellai The Bridge Guam CEDDERS Newsletters Volume 6, Number 4 September 3, 2004 Table of Contents Inside this issue: Page Newborn Hearing Screening Legislation 1 Can Our Baby Hear? 2 FADE Curriculum 3 CNMI Child Care Project 4 Palau Child Care Project 5 MI-SAT Training 6 FSM EC CSPD Election Accessibility 7 Family Support Curriculum 8 Life Span Series Project Enhance Inclusive Program VisitVillage 9 ForumChild Care Training Consumer Advocacy 10 Accessible Transportation 11 Calendar of Events 12 Page 1 Guam CEDDERS Pushes Legislation for Newborn Hearing Screening as Standard of Care Guam CEDDERS, working closely with Senator Lou Leon Guerrero, chairperson of the 27th Guam Legislature’s Committee on Rules and Health, has taken the lead in crafting legislation to make newborn hearing screening part of the standard of care for all infants born on Guam. The Universal Newborn Hearing Screening Act, will require that every infant born on Guam is given a hearing screening test within the first month of life, preferably prior to discharge from the hospital. Newborn hearing screening can identify possible loss in the first days of a baby’s life. If hearing loss is found, further tests can be done to confirm the results, and treatment and intervention can begin during the critical years of speech and language development. Nationwide, it has been found that 2 to 3 infants out of every 1,000 are born with some degree of hearing loss. The Guam Early Hearing Detection Initiative (GEHDI), funded by the Maternal Child Health Bureau and headed by Guam CEDDERS’ Elaine Eclavea, has screened 4,927 infants from 2002 to 2004. Of this group, 29 infants were found with hearing loss, a significantly higher level of incidence. Guam CEDDERS ensures that follow up treatment and intervention is monitored through a tracking and surveillance initiative funded by the Centers for Disease Control. The initiative, under the guidance of Dr. Velma Sablan, supports the development of an electronic system to monitor newborn hearing screening and follow up and will be fully operational by August, 2005. As a result of these efforts, Guam will join 39 states which have passed legislation providing for this critically needed standard of care for newborns. Guam’s 13-page Act was developed based on the recommendation of six major professional organizations in the United States, including the American Academy of Pediatrics, the American Speech and Hearing Association, and the American Academy of Audiology. With written support from the Guam Interagency Coordinating Council, the GEHDI Advisory Committee Parents, Audiological Associates, Guam Memorial Hospital Authority, and parents of an infant with hearing loss, the passage of this legislation is expected in September. Text in colored boxes: Quick Fact: 29 infants born on Guam between 2002-2004 were found to have a hearing loss. Guam Live Births & Screening Statistics 2004 Live Births Screened % Screened May 261 235 90% June 223 200 90% July260 222 85% Total 744 657 88% Page 2 “CAN OUR BABY HEAR?” That was the question that I had asked myself when my beautiful baby girl didn’t pass the initial hearing screening that was conducted prior to our discharge from the hospital. As a parent of two other children, including a 7 year-old boy with special needs, I was glad to hear that newborn babies are now receiving hearing screening prior to leaving the hospital, since that was not the practice when we had our son who was diagnosed with a hearing loss at 4 years of age. The nurse’s aide that conducted the hearing screening at the hospital had been trained to conduct hearing screening on newborns, and shared with us what they will be doing. When we were informed that our daughter did not pass the hearing screening, however, we were still hopeful that it may be an error with the machine, or that the baby may still have amniotic fluid in her ear. The nurse’s aide provided us with an informational brochure on the Guam Early Hearing Detection and Intervention (GEHDI) Project. She informed us to schedule an appointment with the GEHDI office, and to bring our daughter to the Pediatric Evaluation and Developmental Services Center at the University of Guam for a re-screen. Two weeks later, we met with the GEHDI staff and were assured that there could be other factors and not to worry. But after three different screening appointments where all three times our little baby did not pass the screening, the GEHDI nurse mentioned that we needed to schedule our daughter, Maribelle, for a full audiological evaluation. By 3 months of age, we had her evaluated by the audiologist, who informed us immediately after the testing that our baby had a mild to moderate hearing loss. My initial concern was how bad was her loss? How do we know if she hears us or not? How do I know if I should speak louder? With all these questions going through my mind, the audiologist said he could not answer those questions just yet. We had to schedule another hearing assessment called the ABR (Auditory Brainstem Response). Upon getting the results of the ABR, it was confirmed that our little one has a sensorineural, bilateral, mild to moderate hearing loss. We are still so hopeful with her hearing development. She is an active little baby. And as corroborated by our pediatrician, Dr. Eduardo Hidalgo, it was best to begin early intervention services. The earlier we begin intervention, the better the outcome for our child. We then worked with the GEHDI staff to get service with the Guam Early Intervention System (GEIS). They gave us more information about the different types of hearing loss and answered some questions specific to Maribelle’s hearing loss. They encouraged us to ask questions and become knowledgeable about various hearing management options, so we could make informed decisions that would be best for Maribelle. They also encouraged us not be afraid to change our minds, if we feel at any time that what we chose is no longer in the best interest of our daughter. They empowered us to be the advocate for the needs of our child. Maribelle has now been fitted with digital hearing aids. GEIS is working with our daughter and family in ways to assist our little girl. We are all very hopeful. Tomorrow will be an exciting day for us, since Maribelle will try on her new hearing aids for the first time. We are preparing to videotape the experience, to capture the expression on her face when she begins to hear our voices clearer for the first time. But most of all, as a mother, the opportunity for my precious, beautiful, nine-month-old baby to be able to hear me sing her a lullaby, is a gift that is priceless. Belinda Gonsalvo - Parent August 31, 2004 Page 3: Fetal Alcohol and Drug Effects Curriculum Being Developed The Guam Department of Public Health and Social Services, Division of Public Welfare (DPHSS) recently received a Regional Technical Assistance Initiative Mini-Grant from Health Child Care America (HCCA) to expand training for child care providers, network providers and parents/foster parents on the effects of substance abuse and alcohol, especially in providing care for children born addicted to drugs or with fetal alcohol syndrome. The main task of this mini grant is to develop a basic curriculum for parents and service providers covering fetal alcohol syndrome and the impact of prenatal exposure to drugs. Project facilitators from Guam CEDDERS, Elaine Eclavea and Liz Borja, are teaming up with the “Fetal Alcohol and Drug Effect” (FADE) curriculum writers from Guam Early Intervention System (GEIS), Brigette Flores-Lobo, Carmen Quenga, and Rose Tribaudini. Targeted completion date for the curriculum is September with a presentation to the Advisory Committee for review and adoption. Training on the curriculum is scheduled for October and November 2004. This collaborative activity is funded partly by the HCCA Mini-Grant, DPHSS Child Development Block Grant and support from the Guam Department of Education, GEIS. The following individuals serve as the Advisory Committee members under the mini grant: Diana Calvo, DPHSS Chief Human Services Administrator; Lydia Tenorio, DPHSS Administrator, Bureau of Social Services Administration; Barbara SN Benavente, Department of Mental Health and Substance Abuse Supervisor, Prevention and Training Branch; Katrina Rosario Sanchez, Guam Memorial Hospital Authority Social Services; Julie Celeste, DPHSS Work Program Supervisor, Child Development Block Fund, Cathy Tydingco, Program Coordinator, GEIS, and Elaine Eclavea, Guam CEDDERS, Health Wellness and Prevention Initiative Area Coordinator. Photo with caption: Fetal Alcohol & Drug Effect (FADE) curriculum writers include (L-R) Carmen Quenga, Rose Tribaudini, Bridgette Flores-Lobo, & Elaine Eclavea. Advertisement: Universal Newborn Hearing Screening on Guam Available October 1st A Guam CEDDERS Video Production Call (671) 735-2477 for a copy Advertisement: To promote more inclusive practices on the island, Guam CEDDERS, through funding support from the Guam Department of Public Health & Social Services, has produced an 11-minute video entitled, “Inclusive Child Care On Guam”. A child care center and one family care center involved in the Model Child Care Project are featured to highlight best practices in promoting inclusion of young children in child care settings. For your copy of this closed captioned production, contact Guam CEDDERS staff at 735-2477. Page 4: Creating Pathways In The Region… Editor’s note: The following article appeared in the August 10th issue of the Saipan Council Ends Inclusive Childcare Project The CNMI Council on Developmental Disabilities recently completed its Inclusive Childcare Project that started in September 2003 and ended May 2004 with the development of a public awareness information packet on quality inclusive childcare services in the CNMI. The project was conducted through a subcontract with the University of Guam, Center for Excellence in Developmental Disabilities Education, Research & Services, or Guam CEDDERS. Thomas J. Camacho, executive director of the CNMI Council on Developmental Disabilities, received the full and complete work from Elaine Eclavea, Initiative Area Coordinator of Guam CEDDERS, on June 7. The project included a presentation about the project's activities on November 2003 to over 24 Childcare providers, of which 12 are licensed childcare centers, including officials from the PSS Childcare Program and the CNMI Childcare Licensing agency under the Department of Community & Cultural Affairs. The project consultants conducted onsite visits to 12 childcare centers on Saipan and worked closely with staff of the Council, PSS Childcare program, and the DCCA Child Licensing agency. Camacho said these activities were facilitated by the sub-grantee staffs that included Elaine Eclavea and Michael Terlaje of Guam CEDDERS, who conducted the onsite ADA Barrier Identification Survey among 12 child care centers; Guam CEDDERS staff Liz Borja worked on the development of information materials and public awareness campaign on childcare services in the CNMI. As a result, the Council received 12 Childcare ADA Assessment Reports and the Public Awareness Campaign for Childcare Report and Informational Packet for Families. Two outcomes were identified: *Outcome No. 1—Up to 12 CNMI private child care centers on Saipan will receive written reports with recommendations for ensuring that their center is accessible as required by the federal civil rights law, or Title III of the Americans with Disabilities Act of 1990 and for creating an inclusive childcare environment; *Outcome No. 2—The CNMI Council on Developmental Disabilities will produce a public awareness informational packet for families on quality Childcare Centers and the different options available in the CNMI, as well as an "action plan" for implementing a media campaign strategy for promoting quality childcare services in the CNMI. On Nov. 17-20, 2003 onsite visits were conducted to determine the physical and programmatic accessibility to 12 childcare centers on Saipan. The following centers participated cooperatively in the site inspection visit: Golden Harvest International School, Jazz Day Care, Little Darlings Child & Respite Care, R & EQ Child Care, Seventh Day Adventist Day Care Center, Nang's Day Care, Green Meadows School, Joshua Generation Day Care, Pacific Nights Day Care Center, Saipan Child Care Day & Night, Sunrise Day Care Center, and Sister Remedios Early Childhood Development Center. Individual meetings were then conducted with the directors of the each visited center to share results and information of the written report-except for Nang's Day care, which closed down. Resource materials were also provided to each center, including Healthy Start, Grow Smart, Put Reading First: Helping Your Child Learn to Read - Parent Guide, Helping your Child - Become a Reader, Teaching Our Youngest: A Guide for Preschool Teachers and Child Care and Family Providers, and Building Your Baby's Brain. Meetings were also held by Liz Borja with staff from the Childcare Licensing agency and PSS Childcare Development Fund to gather information on childcare regulations and childcare development fund program requirements to gain a better understanding of public awareness information that are in existences and informational materials that would be part of the public awareness informational packet. As a result, the following awareness materials were developed and readied for publication: Checklist for Choosing Quality Child Care, Quality Child Care (information brochure), Things To Look For When Choosing a Child Care Center (brochure), Child Care Program-Curriculum, Instruction, & Assessment (adapted brochure), Child Care Licensing Program (information brochure), Inclusive Child Care for Children with Special Needs: Inclusive Child Care Benefits All Children (pamphlet), Parent, Do You Know What Your Child CAN DO? (4 pamphlets for ages 0-9 months; 9 to 18 months; 18 to 36 months; 3 to 5 years); poster and flyers: Interested in Becoming a Licensed Child Care Provider? Child Care Settings and the Americans with Disabilities Act (booklet). Finally, the project sub-grantee made a PowerPoint presentation on the outcomes of the project to members of the CNMI Council on Developmental Disabilities. Themes of the site visits and recommendations for improvements were shared with the members including sharing of all the public awareness information campaigns, said Camacho. "The completion of the Inclusive Child Care Project now fulfills the 2002-2006 Five-Year State Plan Goal that children and families benefit from a range of inclusive, flexible childcare options," he said. The CNMI Council on Developmental Disabilities awarded $13,100 to Guam CEDDERS from funds partially funded by the CNMI Choice Program under the Council from funds received from the U.S. Centers for Medicare & Medicaid Services. "We're very pleased of the outcomes of the project and the quality of work performed and submitted by the Guam CEDDERS," according to Mariano K. Camacho, Council chair. "We also extend our appreciation to Ms. Andrea Alepuyu, PSS Child Care Program and to Secretary of DCCA, Mr. Juan Babauta and his staff for collaborating with the Council. Our next step is to conduct a follow-up survey to all involved before the end of the year to measure the benefits, impact and outcomes of the project," concluded Camacho. Text in colored box: CNMI Materials For Publication * Checklist for Choosing Quality Child Care * Quality Child Care * Things To Look For When Choosing A Child Care Center * Child Care Program Curriculum, Instruction, & Assessment * Child Care Licensing Program * Inclusive Child Care Benefits All Children * Parents, Do You Know? * Interested in Becoming a Licensed Child Care Provider? * Child Care Settings and the ADA Page 5: Palau Early Childhood System of Services The Palau Ministry of Education, Special Education Program has prioritized, as a result of completing the Self Assessment Report, the development of an Early Childhood system of services for young children, birth to five years old, with or at risk for disabilities, and their families. On June 14 to 18, 2004, Elaine Eclavea from Guam CEDDERS, through funding and resource support from the National Early Childhood Technical Assistance Center (NECTAC), met with parents and service providers from Health Service, Head Start, and Special Education to gather input on early childhood services in Palau. During this meeting, they reviewed present practices for the purpose of establishing a uniform and high quality early childhood system of services. The outcomes of the onsite visit were to provide a better understanding of Palau’s needs in relation to early childhood services and supports for responding to the needs of young children with disabilities birth to five and their families. Six parents of young children attended an input session to share their perceptions and recommendations for improvement on the current system. Overall, parents were pleased with the services and support they have been receiving from special education. One of the recommendations made by the parents was a need for more public awareness on services for young children with special needs, and the referral process for accessing special education services. Palau’s Early Childhood Special Education procedures and guidelines is expected to be completed by September, 2004. Photo with caption: (Front row, L-R) Elizabeth Watanabe, Rosa Lynne Florendo, Meloney Siliang & daughter, Eleanor Manor, (middle row, L-R) Helen Sengebau, Nora Renguul, Maria Tanaka, Evans Imetengel, (back row, L-R) Jane Sadang, Teongel Ngirkelau, Beneth Mitsuru, & Sharon Tellei. Page 6: Photo with caption: Marshall Islands-SAT Training Dr. Nieves Flores, Guam CEDDERS Core Faculty, recently provided training and technical assistance to the Republic of the Marshall Island Ministry of Education, Special Education Division. Through the support of the Western Regional Resource Center (WRRC), approximately 65 faculty members took part in training related to the Marshall Islands Standardized Achievement Test (MI-SAT) on August 3-5. The same group of individuals attended a one-day training session on August 6 entitled, “Adapting Instruction for Special Education Students in General Education Classrooms.” Ramona Albert, Special Education Specialist, and Emi Chutaro, Acting Special Education Coordinator, worked closely with Dr. Flores in coordinating this activity to ensure that topics covered during the training addressed staff concerns. Developing the FSM Early Childhood CSPD The FSM National Department of Health, Education, and Social Affairs (FSM HESA), Special Education Program has prioritized the development of the FSM Early Childhood Comprehensive System of Personnel Development (EC CSPD) that aligns with the standards set forth by the National Association of the Education of Young Children (NAEYC). Through support from the National Early Childhood Technical Assistance Center (NECTAC) and the FSM National Special Education Program, Elaine Eclavea and June De Leon from Guam CEDDERS facilitated an onsite technical assistance visit the week of May 24, 2004 to continue the dialogue with College of Micronesia (COM-FSM) faculty on the development of the EC CSPD and to gather input from service providers and parents of young children with disabilities through focus group sessions. The sessions provided insights as to what early childhood providers should be able to know and do, as well as what supports mean to families of young children with special needs. Thirteen representatives from Pohnpei State Special Education Program and Health Services and FSM HESA Maternal and Child Health (MCH) and Special Education Programs participated in the service provider focus group session. During the day-long session, the team brainstormed and developed a list of knowledge and skills needed for early childhood providers of children with special needs birth to age 5 and reviewed the standards set forth by the NAEYC. The top two priority skill areas listed included: promoting child development and learning of young children including children with disabilities. During an evening parent focus group session, six parents of young children with special needs shared what’s working and what needs improvement for providing supports and services for young children with disabilities and their families. The top two concerns raised by parents included: 1.) Getting consistent home visits from the Related Service Assistant and 2.) Information on child development and strategies parent’s could implement to support the development of their child. The FSM Early Childhood Standards is anticipated to be completed in Fall 2004, which would set the guidelines for pre-service and in-service training programs of service providers working with young children with disabilities birth to age 5 and their families. Page 7: Ensuring Accessibility at Election Sites The Election Season is upon us and voters with disabilities are going to the polls! Guam voters will experience improved access to the polls as an outcome of collaboration of the Guam Election Commission (GEC) with the Guam System of Assistive Technology (GSAT) and Guam Legal Services Corporation (GLSC). Stimulated by problems which surfaced during the 2000 U.S. Presidential Election, the Help America Vote Act of 2000 (HAVA) has helped fund improvements to Guam’s system. The impact of 4-6 million presidential votes being discarded due to faulty equipment and poorly designed ballots has been a boon for Guam local residents, who post some of the best voter turnouts in the nation. Studies conducted by the California Institute of Technology and the Massachusetts Institute of Technology showed three major reasons for the problems that arose during the 2000 election: 1) equipment was very old and not well-maintained; 2) voter registration was unreliable and out of date, preventing many eligible voters from exercising their voting rights; and 3) many polling sites were deemed inaccessible, preventing access for persons with disabilities. The accessibility issue was the basis for GSAT and GLSC ‘s participation in the HAVA project. GSAT conducted comprehensive physical assessment of polling sites identified by the Guam Election Commission. Using the Americans with Disabilities Act requirements, GSAT’s Mike Terlaje and Joseph Mendiola conducted assessments of access routes into the polling rooms, accessible parking spaces, and facility restrooms. Recommendations were submitted to the GEC and the Guam Department of Education (GDOE), a host to the majority of poll sites. Guam CEDDERS staff volunteered to provide on site technical assistance to GDOE maintenance once renovation work began. GSAT staff provided Disability Awareness training to over 300 GEC personnel, poll workers, and volunteers who will be working during the election. The training, which took place on August 27-29, included how to provide directions to voters with disabilities intending to use the new iVotronic electronic voting machines. Guam CEDDERS is proud to be a part of this year’s election support team and believes that many positive changes should be seen as voters with disabilities head to the polls. Photos with captions: GLSC’s Julie Berg tries out the new iVotronic voting machine. Gerry Taitano, GEC Director, addresses voting officials during a recent training on accessibility issues. (Above Left) Mike Terlaje marks off an area for a proposed accessible parking slot at F. Q. Sanchez Elementary in Umatac in preparation for the Guam Primary Election scheduled for September 4. GSAT has requested that a machine be made available at the GSAT Center to help consumers become familiar with the new devices. (Above Right) Mike takes measurements of a ramp and railing at J.P. Torres Elementary School in Santa Rita. Page 8: Maseha Tai Manu – Volume 2 Family Support Completed In response to the Guam Developmental Disabilities Council’s Family Support Initiative, Guam CEDDERS has developed the Maseha Tai Manu – Volume 2, Family Support curriculum for families and service providers that highlights the empowerment of the family. The revised edition consists of two separate manuals. The 15-hour training manual is designed for families of children with disabilities. This manual provides a step-by-step process to guide families through assessing their needs, identifying and coordinating resources, facilitating decision-making process, and collaborating with interagency providers. The goal is to do “whatever it takes” for families that include a member with a disability to just be families. The 30-hour training manual is for families and service providers who work with families of children with disabilities, providing them with practice on working together with families and comparing their level of service with other family support programs across the nation. The Maseha Tai Manu – Volume 2, Family Support curriculum consists of training modules addressing a key set of skills in Family Support. The Facilitator’s Manual gives step-by-step instructions on the training format, materials, setting up cooperative group sessions, and using questioning strategies to encourage interactive discussion with the participants. The Participant’s Manual allows participants to take notes and give written feedback on presentations within the modules. The Manual will also serve as a source of information for the participants after they have completed the training. Photo with caption: Guam CEDDERS June Quitugua conducted a Train-the-Trainer workshop on August 28 for the Guam Developmental Disabilities Council’s Family Support Council on the delivery of the revised Family Support Curriculum. Participants included: (Front row, L-R) Dawn Maka, Shirley Lujan & Janet McDermott. (Back row, L-R) Phyllis Topasna, Guam DDC, Daniel Cobb, & Marcello Ikelap. UT-PA Provides TA to UOG A major benefit of attending off-island conferences is the opportunity to network with colleagues. It was this networking by Guam CEDDERS Director, Dr. Heidi San Nicolas, that established the initial contact for the University of Guam and Guam Community College to receive valuable training and technical assistance from the staff of Project Enhance out of the University of Texas, Pan American. Sylvia Jackson, MS, CHC, project coordinator, was on-island on August 26-31 to conduct training for administrators, faculty, and staff on disability awareness, recruitment and retention of students with disabilities, accommodation strategies, and disability legal issues in postsecondary education. Project Enhance, through support from the U.S. Department of Education, is a three-year program with the goal of “working with disability support offices on university and college campuses to ensure that no student is left behind as they pursue their postsecondary education.” Page 9: Inclusive Virginia Program Visit Through support from the National Early Childhood Technical Assistance Center (NECTAC), Cathy Tydingco, Program Coordinator for Guam Early Intervention System, Mary Kidd and Elaine Eclavea from Guam CEDDERS had the opportunity to visit with Corrine Garrland, Executive Director and Lisa Thomas, Deputy Director of the Child Development Resources Inc. (CDR) on August 5-6 in Williamsburg, Virginia. The purpose of the onsite visit was to observe inclusive early childhood programs that included Early Head Start Programs and Child Care centers. CDR is a private, non profit agency that provides services for infants and toddlers in the greater Williamsburg, Virginia area and training to early childhood and health professionals nationwide. Photo with caption: Left photo: (L-R) Cathy Blas Tydingco, Mary Kidd, Lisa Thomas, & Elaine Eclavea. Village Forums Through the collaborative efforts of the Developmental Disabilities Administration Tri-Agencies, a “Village Forum” community outreach series has been taking place in various Guam municipalities starting in August. With the Guam DD Council taking the lead, Guam CEDDERS, Guam Legal Services, and other community service providers such as the Dept. of Public Health and Social Services, Dept. of Mental Health and Substance Abuse, Dept. of Integrated Services for Individuals with Disabilities, Sanctuary, Inc., Catholic Social Services, PROCEED, Guma Mami, Inc., & the Salvation Army, have been meeting with village residents to share information on the supports provided by each agency. Guam CEDDERS Liz Borja (above photo, background in yellow) is shown here presenting information in the village of Agana Heights. Family Child Care Provider Training Update A total of 69 Family Child Care Providers, center-based providers, and parents have attended the Family Child Care Provider Training Series for 2004 entitled “Developmentally Appropriate Practices in Child Care,” conducted by Mary Kidd, Guam CEDDERS Training Associate. Participants received a Certificate of Completion for 15 hours of training covering the following topics: Standards & Quality Child Care, Creating an Inclusive-Welcoming Environment, Early Literacy, Numeracy, & Language Development, and Health, Safety, & Nutrition. Dr. Jian Yang, Food Scientist at the University of Guam, College of Natural and Applied Sciences, and Yvonne Tam, Research Assistant, were guest presenters covering the topic of Food Safety. Funding for this training was provided by the Child Care and Development Fund Program administered by the Department of Public Health & Social Services, Division of Public Welfare. Text in colored box: “Developmentally Appropriate Practices in Child Care” Training Dates for September * September 15 to 17, 2004, 12 noon to 5 p.m. * September 20 to 22, 2004, 12 noon to 5 p.m. * September 18 & 25, 2004, 8 a.m. to 4:30 p.m. To register or for more information Call 735-2466 Photo with caption: Participants engage in a trust activity during the training. Page 10: Moving Ahead Through Consumer Advocacy What does it take to move people in our community? If you look at the story of Evelyn Duenas, you could say it takes “true grit” and lots of advocacy. Facing the challenge of getting around the community using accessible transportation, Evelyn Duenas has undertaken an advocacy role for transportation and transit services. After her retirement from employment with the Department of Education, Evelyn discovered that without a routine need for transportation services to a place of work, scheduling transit services was a frustrating experience. It then became evident that transit services contracted by the Government of Guam did not provide adequate or equal access for persons with disabilities. In her search for forward movement on transit issues, Evelyn accessed technical assistance from Guam CEDDERS. At her request, Guam CEDDERS armed Evelyn with information, technical writing, and suggestions for strategies to address the numerous problems she and other customers with disabilities using public transportation face on a day-to-day basis. Concerned with a change in the transit services beginning in January, 2004, Evelyn engaged in a search for information on the procurement of services by using the Freedom of Information Act. Despite inaccessible facilities at General Services Agency, the government’s procuring authority, she obtained “mountains” of documentation on the service procurement, which reflected the source of controversy between two competing vendors. The controversy has ended up in court, ensuring that riders of the system would be subject to the instability of month-to-month negotiation of services. Convinced that someone had to speak up for an issue that affected so many individuals with disabilities, Evelyn addressed her concerns in writing and then began requesting meetings with the Deputy Director of the Department of Administration, Mr. Joseph Manibusan. During these discussions regarding the failure to provide adequate service, Evelyn continued to educate the Deputy Director on the requirements of the ADA and the duty of the government to ensure acquisition of adequate transit services. Evelyn carefully crafted her concerns and provided suggestions for remediation of problems. Negotiating for action, she temporarily withheld the filing of a complaint with the Office of Civil Rights, one that was prepared with backup information acquired from her search on the procurement issue. However, due to the non-resolution of the problems, that complaint was eventually filed. In an effort to improve the ability of a contractor to respond to the needs of individuals with disabilities, Evelyn volunteers her services to answer the phone and relay transit requests to dispatchers in the office. She additionally trains other individuals with a disability in telephone techniques to assist her in building work experience for her resume. Most recently, Evelyn presented at the First Independent Living Forum, “Independent Living: Past, Present, and Future.” Her presentation, “Transportation and Independence: A Personal Experience,” provided attendees with a picture of the changes in transportation, accessing air and bus travel, rights and responsibilities of riders under the ADA, and a call for voicing common concerns on travel and accessibility in the community. The advocacy work of Evelyn Duenas is far from over. Riders with disabilities are still facing the inability to obtain paratransit services on a 24-hour advance notice reservation, make reservation requests within a 14 day advance window, purchase fare tickets at convenient locations, denial of transportation requests based on trip purpose, lack of travel training services, absence of an advisory committee, and good communication regarding the guidelines for ridership. You are sure to see Evelyn in the forefront of change alongside other public transportation customers with disabilities in the months to come. Their mission is a challenge, but advocacy, education, and organizing their voice can result in changes of a system that needs to take steps forward in ensuring equal access. Photo with caption: Ginger Porter (left) and Evelyn Duenas take a short break right after Evelyn’s presentation at the First Independent Living Forum at the Guam Hilton. Page 11 Text in colored box: Accessible Transportation Consumer Rights The Americans with Disabilities Act of 1990 and Guam Public Law gives you the right to: * Use any public bus. * Request route and service information in a format you can use. * Stand on a lift if you cannot use the steps of the bus. * Expect that all lifts and other accessible equipment be kept in good working order. * Use a common wheelchair or other mobility aid to board a bus. * Have stops, major streets, and intersections called out along the route. * Ride the bus seated in your own mobility aids. * Have securement devices made available to you. * Travel without a personal attendant or aide. * Request services of a travel assistant. * Travel with service animals that are not disruptive or dangerous to others. * Travel with any necessary equipment or devices, such as respirators or portable oxygen tanks. * Ample time to get on and off the bus. * Get on and off the bus at any regular stop where a lift can be safely used. * Receive courteous, respectful assistance. * File complaints with the transportation provider, if necessary. Consumer Responsibilities The ADA also expects riders with disabilities to: * Use fixed-route transportation, when possible. * Know if your mobility aid meets the “common wheelchair” requirements (30” wide and 48” long or less and no more than 600 lbs when occupied). * Arrive at the bus or paratransit stop at the correct time. * Know how to contact the transportation provider and receive route schedules and information. * Keep service animals under control. * Request lap/shoulder belts and securement for your wheelchair, if desired. * Signal or ask the driver to stop the bus at the desired designated stop. * Pay the proper fare. * Treat the driver and other passengers with courtesy and respect. * Know how to file complaints with the transit company, if necessary. Source: Easter Seals Project Action Page 12: Calendar of Upcoming Events September 2004 * Sep 3 - Guam CEDDERS Advisory Council Meeting, 3:30 pm, GSAT * Sep 4 - BLS, CPR, & FBAM Training, GSAT * Sep 11 -BLS, CPR, & FBAM Training, GSAT * Sep 11 - Across the Life Span Series Workshop, Hotel Nikko, 9 am-2 pm * Sep 15-17 -Family Child Care Training, GSAT, 12-5 pm * Sep 18 -Family Child Care Training, GSAT, 8 am-4:40 pm * Sep 18 - Guam DOE School Aide Orientation, UOG Lecture Hall * Sep 20 - FSM Special Education Program Coordinators Meeting, Guam * Sep 20-22-Family Child Care Training, GSAT, 12-5 pm * Sep 21-23 - WRRC Pacific Regional Planning Meeting * Sep 23 -Family Child Care Training, GSAT, 8 am-4:40 pm * Sept 25 - Guam DOE School Aide Training: Crisis Prevention Intervention & Cardio-Pulmonary Resuscitation October 2004. * Oct 12-14-National Center for Special Education Accountability Monitoring (NCSEAM) On-Site TA Visit, Guam * Oct 15-19-NCSEAM On-Site TA Visit, Saipan, CNMI * Oct 25-Launch of GOAL-AT & Telework Loan Programs * Oct 20-25-FSM Student Evaluation/ Eligibility Course, Guam * Oct 26-28-FSM Assessment Orientation Summit, Guam November 2004 Nov 1-4-FSM National Early Childhood Special Education Meeting, Pohnpei, FSM Advertisement: Attention… Parents and Family Members of Children with Disabilities You are invited to participate in…Across the Life Span Series: Early Intervention & Education. A workshop designed to provide information on services and support available for children with disabilities Workshop Topics: • Prenatal Care • Head Start • Early Intervention • Special Education • Childcare September 11, 2004 9:00 a.m.—2:00 p.m. Hotel Nikko Guam For more information call Guam DDC 735-9127, Guam CEDDERS 735-2481, or GLSC 477-9811 For special accommodations, please contact the Guam DDC at 735-9127, 72 hours in advance or by September 8, 2004. University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (Guam CEDDERS) Newsletter Guam CEDDERS Office of Academic & Student Affairs University of Guam, UOG Station Mangilao, Guam 96923 Phone: (671) 735-2480/1 Fax: (671) 734-5709 TTY: (671) 735-6531 Email: heidisan@uog9.uog.edu I Tellai is a quarterly publication of Guam CEDDERS. Director: Heidi San Nicolas, Ph.D. Editors: Terrie Fejarang & Ginger Porter Layout & Design: Margaret Johnson This issue of I Tellai was made possible by contributions from the following Guam CEDDERS staff members: Liz Borja, Elaine Eclavea, June DeLeon, Terrie Fejarang, Nieves Flores, Mary Kidd, JJ Mendiola, Ginger Porter, June Quitugua, Velma Sablan, Heidi San Nicolas, Mike Terlaje, & Bill Toves. Alternative formats (e.g. Braille, large print, or audio tapes) of I Tellai will be made available upon request. Please contact Margaret Johnson at (671) 735-2477 (v), (671) 735-6531 (TTY), or (671) 734-5709 (fax) for more information.