2008 Guam EHDI Project Progress Report At-A-Glance Guam Early Hearing Detection & Intervention (Guam EHDI) Project Håfa Ådai! ly Hearing Detection and Intervention (Guam EHDI) Project is excited to provide you with this 2008 Annual Report At-A-Glance! The purpose of this publication is to provide parents, health care professionals, policy makers, and other community partners with an update on the status of newborn hearing screening, early hearing detection, and intervention services on Guam as well as other areas of the Guam EHDI Project, including public awareness & training activities and the Family Support Group. Guam EHDI is 100% federally funded through grants and cooperative agreements with the U.S. Department of Health & Human Services (HHS), Health Resources & Services Administration (HRS Prevention (CDC). A) and the Center for Disease Control & We look forward to continuing to ensure that all infants have access to newborn hearing screening and intervention services through strengthened partnerships with our community! Please feel free to contact Guam EHDI Project staff at 735-2466 for more information or visit us online at www.guamehdi.org. Si Yu’os Ma’åse, Margarita Gay, R.N., M.N., Chairperson, Guam EHDI Advisory Committee About Guam EHDI The Guam EHDI Project is 100% federally funded and was established in 2002 through a federal grant awarded to the University of Guam Center for Excellence in Developmental Disabilities Education, Research, & Service (UOG CEDDERS). The grant was awarded by the U.S. Department of Health & Human Services (HHS), Heath Resources and Services Administration (HRSA) to establish Guam’s Newborn Hearing Screening and Intervention Program. In 2003, UOG CEDDERS also applied for and received funding through a Cooperative Agreement with the U.S. HHS, Centers for Disease Control and Prevention (CDC) to establish an integrated data, tracking, and surveillance system to support the Guam EHDI Project. Guam received training and technical assistance from the University of Maine to develop the data system, known as Guam ChildLink. In 2006 and 2008, Guam CEDDERS submitted applications to the U.S. HHS HRSA and CDC for continued funding support for the Guam EHDI Project. Through the efforts of the Guam EHDI Project, Universal Newborn Hearing Screening and Intervention is a law on Guam! The Universal Newborn Hearing Screening and Intervention Act (Public Law 27-150) became law in December 2004. Guam’s local legislation aligns with national goals and assures an upgraded standard of care for all babies born on Guam. The 1-3-6 Plan The Guam EHDI Project goals and objectives align with National EHDI goals recommended by the U.S. Health and Human Services, Centers for Disease Control and Prevention (CDC), also known as the “1-3-6 Plan”, described below: * Before 1 month of age: All infants will be screened for hearing loss prior to hospital discharge. * Before 3 months of age: All infants who do not pass their hearing screening will have a diagnosis. * Before 6 months of age: All infants with a confirmed hearing loss will receive early intervention services. National Goals Goal 1: All newborns will be screened for hearing loss before 1 month of age, preferably before hospital discharge. Goal 2: All infants who screen positive will have a diagnostic audiological evaluation before 3 months of age. Goal 3: All infants identified w/hearing loss will receive appropriate early intervention services before 6 months of age. Goal 4: All infants and children with late onset, progressive or acquired hearing loss will be identified at the earliest possible time. Goal 5: All infants with hearing loss will have a medical home. Goal 6: Every state will have a complete EHDI Tracking and Surveillance System that will minimize loss to follow-up. Goal 7: Every state will have a comprehensive system that monitors and evaluates the progress towards the EHDI Goals and Objectives. (Source: http://www.cdc.gov/ncbddd/ehdi/nationalgoals.htm) Types of Hearing Loss Identified from 2004-2008 • Conductive1 - 11 • Sensorineural2- 8 • Mixed3 -4 Total: 23 1Conductive Hearing Loss - Type of hearing loss where sound is not conducted efficiently through the outer ear canal to the e ardrum and can often be medically or surgically corrected. 2Sensorineural Hearing Loss - Type of hearing loss when there is damage to the inner ear or to the nerve pathways from the inner ear to the brain. 3Mixed Hearing Loss - Type of hearing loss that is a combination of conductive hearing loss and sensorineural hearing loss. Over the past four years, Guam EHDI has identified 23 infants with hearing loss. ALL 23 INFANTS ARE CURRENTLY RECEIVING EARLY INTERVENTION SERVICES from the Guam Department of Education, Division of Special Education, Guam Early Intervention System Figures 1 thru 3 (right) highlight Guam’s performance for the past four years in the 1-3-6 plan of infant hearing screening, diagnosis of hearing loss, and receipt of early intervention services. The data includes infants born at GMHA & Sagua Mañagu. Figure 1 A line graph of the percentage of infants who received a hearing screening before 1 months of age. The rate of infants screened for hearing loss before 1 month of age has been steady over the past four years. For the two civilian birthing sites on Guam - Guam Memorial Hospital Authority and Sagua Mañågu Birthing Center - Guam has achieved and maintained it’s goal of 98% of infants who receive a hearing screening before 1 month of age. Currently, newborn hearing screening data for babies born at the U.S. Naval Hospital, Guam are not reported, as a Memorandum of Understanding is still being negotiated with the Guam EHDI Project. Figure 2 A graph of the percentage of infants who received a Diagnostic Audiological Evaluation (DAE) before 3 months of age. The rate of infants who receive a Diagnostic Audiological Evaluation (DAE) before 3 months of age has steadily increased during the years 2005 thru 2007, with a slight decrease in 2008. The Guam EHDI Project continues to work closely with local audiologists and physicians to ensure infants needing a DAE receive the evaluation before 3 months of age. Figure 3 A graph of the percentage of infants with an Individualized Family Service Plan before 6 months of age. The rate of infants identified with a hearing loss who started receiving early intervention services before 6 months of age has remained steady over the past four years, with the exception of 2006, which saw a decline of 30% from the previous year. The Guam EHDI Project continues to work closely with the Guam Early Intervention System to ensure infants identified with a hearing loss have an IFSP before 6 months of age. For the past four years, Guam EHDI has identified 23 infants with hearing loss, Including: 8-Sensorineural Hearing Loss, 4-Mixed Hearing Loss, and 11-Conductive Hearing Loss. ALL 23 INFANTS ARE CURRENTLY RECEIVING EARLY INTERVENTION SERVICES by the Guam Public School System, Division of Special Education, Guam Early Intervention System Guam EHDI Family Support Group The Family Support Group for families of children with hearing loss continue to meet at least 6 times a year. During meetings families are given the opportunity to network with each other and share experiences and assist each other with access to resources and services. In addition, special presentations by guest speakers are given, such as strategies for communicating with children with hearing impairments. There are currently 12 active parent members of the group. To become a member, or for information, please contact Ann Marie Cruz, parent member at 777-7991 or email at amdcruz@teleguam.net or visit the Guam EHDI website at www.guamehdi.org. Definitions Conductive Hearing Loss - Type of hearing loss where sound is not conducted efficiently through the outer ear canal to the eardrum and can often be medically or surgically corrected. DAE - Diagnostic Audiological Evaluation - an evaluation conducted to determine if a person has a hearing loss and the degree of the hearing loss. EHDI - Early Hearing Detection and Intervention IFSP - Individualized Family Service Plan - a family-centered plan that lists the services and supports a family receives from under Part C of the Individuals with Disabilities Education Improvement Act (IDEA), known as the Guam Early Intervention System. Mixed Hearing Loss - Type of hearing loss that is a combination of conductive hearing loss and sensorineural hearing loss. Sensorineural Hearing Loss - Type of hearing loss when there is damage to the inner ear or to the nerve pathways from the inner ear to the brain. SUMMARY OF TRAININGS FOR 2008 Guam EHDI conducts various training activities for parents and health care professionals. Training for parents include topics such as communication strategies, hearing and speech development, assistive devices, and others. Training for health care professionals include presentations to pediatricians on newborn hearing screening and the importance of follow-up screening, screener training on administration of the hearing screening using the Otoacoustic Emissions (OAE) instrument, and training on the Guam ChildLink system. In addition, Guam EHDI participates in public awareness activities throughout the year to promote the project with specific focus on the importance of follow-up at all levels: 2nd screening, DAE, early intervention services, and high risk. The following is a summary of the number of activities held for 2008: * ?Family Support Group - 5 * ?Training for Hearing Screeners - 11 * ?Training on Guam ChildLink - 1 * ?Prenatal Presentations - 4 * ?Training for GEIS Staff - 2 * ?Participation at National Conferences – 2 Facts About Hearing Loss Did you know that… * All infants can be evaluated for hearing loss. Tests are safe, painless and easy to administer. * Hearing loss is the most common congenital anomaly found in newborns, however, not all newborns are routinely tested for it. * Approximately three per 1000 babies are born with a significant hearing loss, and many more children are born with milder forms of hearing loss. * 14.9% of US children aged six to nineteen have a measurable hearing loss in one or both ears. * Any degree of hearing loss can be educationally disabling for children, even children with mild to moderate hearing losses can miss up to 50% of classroom discussions. * Unmanaged hearing loss in children can affect their speech and language development, academic capabilities and educational development, and self-image and social/emotional development. * Studies estimate that as much as 90% of what young children learn is attributable to the reception of incidental conversations around them. * 37% of children with only minimal hearing loss fail at least one grade. * Recent National Institutes of Health (NIH) studies have shown that children with hearing loss who are identified and receive early intervention prior to six months of age develop significantly better language ability than children identified after six months. * The average age of identification of early-onset hearing loss in the U.S. is two years of age. Source: Gordon-Langbein, A. http://www.agbell.org For more information about the Guam EHDI Project and additional resources, contact: Phone: 735-2466; TTY: 734-6531; Email: nenehearing@guamehdi.org Website: www.guamehdi.org Office: University of Guam Campus, Dean Circle House 24 (M-F: 8-12/1-5) Publication funded by the Guam Early Hearing Detection and Intervention (Guam EHDI) Tracking, Surveillance, and Integration – CDC Cooperative Agreement (Grant No. 1UR3DD000401-01) funded by the U.S. Department of Health and Human Services (HHS), Centers for Disease Control and Prevention and Guam EHDI Phase III: Reducing the Loss to Follow-Up (Grant No. 2H61MC00094-08-00) funded by the U.S. HHS, Health Resources & Services Administration (HRS) facilitated by the University of Guam Center for Excellence in Developmental Disabilities Education, Research, and Service (Guam CEDDERS).