Header: Guam Early Hearing Detection and Intervention Project, Guam Center for Excellence in Developmental Disabilities Education, Research, and Service, University of Guam, Unibetsedåt Guahan, Office of Academic & Student Affairs, Dean Circle House 24/26 • UOG Station • Mangilao, Guam 96923 (671) 735-2466 (V) (671) 734-6531 (TTY) (671) 734-5709 (Fax) Website: www.guamehdi.com E-mail: nenehearing@guamehdi.com Guam EHDI Advisory 1st Quarterly Meeting (Year 3) Wednesday, July 30, 2008 Guam Marriott Resort & Spa Members Present Ms. Lina Leon Guerrero Mr. David Zieber Ms. Pat Mantanona Mr. Richard Flores Ms. Joyce Flores Mr. Dennis Triolo represented by Ms. Polly Triolo Members Absent Dr. Robert Leon Guerrero (off-island) Ms. Bridgette Flores-Lobo Ms. Josephine Santos Ms. Belinda Gonzalvo Ms. Maria Victoria Guiao Ms. Glenda Leon Guerrero Ms. Ann Marie Cruz (off-island) Ms. Avelina Opena (off-island) Mr. Joseph Mendiola (Joe) Mr. John Cruz Ms. Margarita Gay Dr. Velma Sablan Ms. Lenny Josef Dr. Manuel De Castro (off-island) Mr. Edmund Cruz Mr. Joseph J. Mendiola (Jay) (off-island) Guam EHDI Staff Members Present Ms. Elaine Eclavea Ms. Vicky Ritter Ms. Lizzy Borja Ms. Ruth Leon Guerrero Meeting Notes Meeting was called to order by Ms. Joyce Flores, Co-Chairperson, at 12:05 p.m. 1. Mrs. Flores requested for members to review the minutes of the last advisory committee meeting held on April 28, 2008; however, because a quorum is not present, the purpose of today’s meeting will be to inform members of progress updates. 2. Mrs. Flores turned the floor over to Mrs. Ritter who asked members to refer to the PowerPoint handout in their packets that was disseminated to members. Footer Page 1 of 6 Page 2 3. Mrs. Ritter proceeded with the outcomes of the Advisory meeting which is: to update advisory members on the status or progress made on the goals and objectives of the project, as well as to give members the opportunity to make suggestions and provide feedback to improve activities in meeting the objectives of the grant. The updates are from Year 2, March to May 2008. * Guam EHDI Goal One- improve screening rates from 95% to 100% of all infants born on Guam, minimize missed and refer rates by increasing return rates from 47% to 96% for those needing 2nd screening. * GMHA data from March to May 2008 show that they are currently screening at 97-100%. Of these, 4-10% failed the initial screening (FIS). This is the first quarter that the FIS rate is in the single digit range! Sagua Managu screens their infants at 98-100%, and has a FIS rate of 11-20%. The combined FIS rates of the birthing sites from March to May 2008 ranged from 5-12%. Again, this is the first quarter that the combined FIS rate is in the single digit range, which shows continued improvement in the reduction of the refer rates. * The total Lost to Follow-up rate of re-screens for GMHA and Sagua Managu is currently at an average of 13%. * Goal Two- all infants who screen positive will have a full diagnostic audiological evaluation before 3 months of age. Reduce the time lag from referral to audiological evaluation from an average of 8 months to an average of 1 to 3 months. * Ms. Triolo reported that for the past year, Audiological Associates has performed the diagnostic ABR, and then payment comes much later. Although funding for audiological evaluation is exhausted, Audiological Associates continues to give appointments and evaluate infants, in the interest of meeting the Guam EHDI goals, * Mrs. Ritter added that Audiological Associates has been really good with continuing evaluations even though contract funding has been exhausted and new funding being processed. Timelines continue to be met because of cooperation from Audiological Associates. Guam EHDI and GEIS appreciate this cooperation. * Goal Three- infants with hearing loss will receive appropriate early intervention services before 6 months of age * Mrs. Ritter reviewed the data of the 11 infants referred for diagnostic audiological evaluations (DAE) that were born from March to June 2008. * Mrs. Eclavea questioned the high number of referrals for this reporting period. * Mrs. Ritter explained that there were 2 babies that had Down Syndrome and 2 infants with cleft lip & palate. These infants tend to have more issues with Footer: Page 2 of 6 Page 3 hearing problems. Additionally, 5 babies born in June are included in this data, and not in the previous slides. * Mrs. Ritter reported that 6 infants all completed their DAE within the time frame set in the Guam EHDI goals and had an Individual Family Service Plan (IFSP) within the appropriate time. Three infants have an appointment for DAE and two infants are pending an ABR appointment. * Mrs. Triolo added that recently, she has noticed that the infants that have appointments for an ABR evaluation seem to be showing up for their DAE appointments. * Mrs. Eclavea discussed funding and contracts for audiological evaluations. ABR appointments will be made through GEIS for now. The contract allocation for audiological services needs to be reviewed because this is the first year that Guam EHDI has exhausted its audiological evaluation funds within the first 4 months of the grant year. * Goal Four- infants and children with late onset, progressive or acquired hearing loss will be identified at the earliest possible time. * Mrs. Ritter reviewed the data of high-risk infants lost to follow-up from March to May 2008. In March 2008, 50% of high-risk infants were lost to follow-up, with rates dropping dramatically to 18% in April 2008, and sharply climbing to 73% in May 2008. GEIS contacts the high-risk families and performs the rescreens. * Ms. Borja added that GMHA should do more training and teaching of parents regarding high-risk factors because her relative had a child born in June with risk factors. Upon discharge, parents were not informed about the risk factors and the need for a 6-month follow-up screening. Ms. Borja informed the parents about the child’s risk factors and the need for a re-screen at 6 months of age. * Mrs. Ritter commented that the challenge for GEIS is its ability to contact families for the 6-month follow-up, and meeting resistance from families due to the fact that the child appears to be doing well, and that sometimes families are not informed by the birthing sites regarding the need for high-risk factor rescreening. * Ms. Leon Guerrero recommended that pregnant mothers, through prenatal classes at GMHA and Sagua Managu, are informed about hearing screening and the importance of high-risk rescreening. * Ms. Borja added that obstetricians should also be informed about Guam EHDI and the importance of follow-up for high risk factors at 6 months of age. * Ms. Pat Mantanona added that the high-risk cards are sent out to families if high-risk rescreening is needed, as another means of contacting families. Footer: Page 3 of 6 Page 4 * Goal Five- infants with hearing loss will have a medical home and parent-to-parent support. * Mrs. Ritter discussed the trainings held for nurses from March to June 2008. Five nurse’s aids were trained during this time period; 1 at GMHA and 4 at Southern Region Public Health Center. * Mrs. Ritter continued with updating members on hearing screening at Northern Region Public Health Center. The room that will be used for screening is not yet ready, and training is awaiting the availability of the screening room. Southern Region Public Health Center received their training in June 2008, but the room that will be used for screening needs to be cleaned and cleared of stored equipment. Hearing screening is done sporadically. * Mrs. Ritter informed the membership regarding a meeting held with Dr. Maria Solomon, the University of Guam (UOG) Director of Nursing and Guam EHDI. The purpose of this meeting was to discuss the feasibility of including newborn hearing screening in the training curriculum of student nurses at UOG. * Mrs. Ritter continued discussing her participation with Mrs. Eclavea in the taping of a talk show with Ms. Karen Flores at the KUOG radio station. Topics discussed revolved around universal newborn hearing screening, Guam EHDI, and the importance of hearing screening follow-up and early intervention. * Mrs. Ritter added that Guam EHDI participated in a table display at the American Pacific Nursing Leaders Council in June. Brochures, posters and pamphlets were passed out, and questions were fielded about Guam EHDI, and the possibility of being a resource for the new Federated States of Micronesia (FSM) EHDI grant. * Mrs. Flores discussed the parent event on September 20th, which would be a poolside “bash” at the Marriott Resort and Spa. Ms. Pauline Camacho, the Parent Information Resource Center (PIRC) Director, will talk to parents about the Center and its purpose. * Mrs. Eclavea added that Dr. Sablan will conduct a needs assessment survey for families at this event to see what parents would like to see happen for the new grant year. Parent events this year could be formal or informal events. * Additionally, Mrs. Flores reported on the upcoming Family Support Conference in October that one parent will be sent to attend, that will discuss strengthening family supports in different states. * Ms. Mantanona added that Part C Coordinators were invited to this conference to look at policy and procedures that would help support parents. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. Footer: Page 4 of 6 Page 5 * Mrs. Eclavea discussed the updates to Guam ChildLink, in lieu of Mr. Joseph Mendiola (JJ), who is off-island. Guam EHDI had a technical assistance visit in May by Mr. Quansheng Song from the University of Maine. GMHA is electronically linked and data is being shared. The only birth site not linked with ChildLink is U.S. Naval Hospital. Firewall blockage at Central Region Public Health Center continues to be an issue that JJ is working on with Mr. Benigno Camacho. Delivery and set up of hardware at Northern Region Public Health Center has not been completed yet. * Mrs. Eclavea informed the membership that the Guam EHDI-System Enhancement and Refinement (SER) grant was awarded to Guam for the next three years, which would augment the Guam EHDI Tracking and Surveillance to include regional linkages, medical home, and additional linkages, to possibly link with U. S. Naval Hospital, to Guam ChildLink. Getting electronic birth certificates for Guam will be one focus of the new grant. Additionally, the new grant will also look at using data collected through Guam ChildLink to refine and drive management decisions. Lastly, data fields could be expanded to include data on metabolic screening information for Public Health for improved tracking and follow-up. * Mrs. Eclavea commented that Guam is at a disadvantage because we do not have electronic birth certificates. There is a meeting scheduled with the Governor’s office and the Director of Public Health to continue work on this issue. * Ms. Borja posed a question regarding noise-induced hearing loss. One parent was concerned about the level of noise at the Family Fair event at Agana Shopping Center recently, and mentioned that she thought about not participating because the noise was so loud and she was afraid it would cause hearing loss in her child. Ms. Borja questioned if noise-induced hearing loss was within Guam EHDI’s scope of work to address in its public awareness materials. * Mr. Zieber responded to the affirmative. He explained that one-time exposure to loud sounds will not damage hearing, but long-term exposure to loud sounds, like the use of an ipod with the music turned up very loud, can cause hearing problems, in the long run. * Ms. Mantanona added that she sees young moms as well as siblings put earphones with music playing, into young infants’ ears, because they think it looks cute when the baby sits and listens to the music. * Ms. Borja gave an update on public awareness products developed and mass dissemination bi-annually. * Mrs. Ritter added that clinics and professionals liked the “Hearing and Speech Milestones” poster and brochure, because the information is general, important, and pertains to all children. Footer: Page 5 of 6 Page 6 * • Ms. Borja reported that the vignette video about success stories is on hold until after the Guam EHDI Family Support Group goals and objectives are finalized. Additionally, the new Nene Directory will be a comprehensive directory for children birth to 5 years old, not just for children with hearing loss. Finally, the Guam EHDI informational video created 6 years ago will be updated to include initial hearing screening through full diagnostic evaluation and highlighting the Guam ChildLink data system. * Ms. Borja requested input and recommendation on new products regarding increasing public awareness, especially regarding professionals that work with children with hearing loss. * Mrs. Flores recommended updating parent brochures with current information, and the mass distribution should include the parent brochure. 4. Open discussion: * Mrs. Eclavea informed the members that there are plans to have the first Pacific Regional EHDI conference, tentatively scheduled for September, to include an audiological section and a section about Guam ChildLink, and how to set up an effective EHDI Advisory committee. Additionally, there are plans for a Pacific Regional EHDI conference later that would be sponsored by CDC. * Mrs. Eclavea also informed the group that Ms. Kim Aeillo, Coordinator for Kansas Sound Beginnings program, is a pediatric audiologist and is moving to Guam at the end of August. She is considering working with the Guam Public School System but apparently there is no funding right now. Mrs. Eclavea is looking at how to include Ms. Aeillo’s expertise to support Guam EHDI’s goals. * Mr. Zieber added that there will be a cochlear training on “mapping”. Dr. Fell, the ear, nose and throat physician already received training in March. * Ms. Borja informed the membership that Project Tinituhun will have a Family Information Fair on August 23rd at the Agana Shopping Center, for children birth to five years old. The meeting was adjourned at 1:02 p.m. Footer: Page 6 of 6