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 Tuesday, June 26, 2007 Guam Marriott Resort & Spa Members Present: Dr. Manuel DeCastro Mr. Edmund Cruz Ms. Josephine Santos Mr. Richard Flores Ms. Ann Marie Cruz Ms. Avelina Opena Ms. Bridgette Flores-Lobo Ms. Joyce Flores Ms. Margarita Gay Ms. Evelyn Claros for Pat Mantanona Ms. Polly Triolo for Dennis Triolo Members Absent: Mr. Joseph Mendiola (Joe) Ms. Lenny Joseph Ms. Glenda Leon Guerrero Ms. Belinda Gonzalvo Mr. David Zieber Mr. John Cruz Dr. Velma Sablan Ms. Lina Leon Guerrero Ms. Maria Victoria Guiao Dr. Robert Leon Guerrero Guam EHDI Staff Members Present: Ms. Elaine Eclavea Ms. Vicky Ritter Ms. Lizzy Borja Mr. Joseph J. Mendiola (Jay) Meeting Notes Meeting was called to order by Ms. Joyce Flores, Co-Chairperson, at 12:00 noon. 1. Ms. Flores requested for members to review the minutes of the last advisory committee meeting on May 1, 2007. The minutes were approved with no changes. 2. Ms. Flores requested for members and staff to introduce themselves. * Ms. Flores turned the floor over to Ms. Eclavea who asked members to refer to the beige sheets for the PowerPoint handout in their packets that was disseminated to members. 3. Ms. Eclavea 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, December 2006 to March 2007. * 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. Footer: Page 1 of 6 Page 2 * GMHA is currently screening at 91%. Of these, 14% failed the initial screening (FIS). Sagua Managu screens all their babies except the infants transferred to GMHA. Sagua Managu has a FIS rate of 36%. We’re working with Lina Leon Guerrero to reduce this high percentage. The total Lost to Follow-up rate of re-screens for both GMHA and Sagua Managu infants is 21%, with Sagua Managu at 38% and GMHA at 7%. * Of the 3128 infants born at GMHA and Sagua Managu from April 2006 to March 2007, 2864 were screened, 498 FIS, and 2617 were screened before 1 month of age (91%). * Ms. Santos asked Ms. Eclavea what type of follow-up is being done for the 9% that were not screened before 1 month of age. Ms. Eclavea replied that Northern and Southern Public Health clinics have not had their training for performing hearing screening in their clinics yet. Ms. Ritter is working with Linda Denorcey to establish training dates for these clinics. Central Public Health Center is already equipped to perform hearing screening on their patients. Data linkage with Public Health is progressing, to ensure the nurses can access hearing screening data to know the screening status of a particular child. Computer hardware has been purchased. In addition, the project is collaborating with the Women, Infants and Children (WIC) clinics at Public Health as another strategy for locating families that are Lost to Follow-up. Additionally, accurate demographics continue to hinder finding families, but parents are given hearing rescreen appointment dates before the infant is discharged from each birthing site. * Guam EHDI Goal Two- all infants who screen positive will have a full diagnostic audiological evaluation by 3 months of age. * Of 13 babies that failed the 2nd screening, 10 received a diagnostic evaluation by 3 months of age and 3 did not. Of the 3 babies that did not get a full diagnostic evaluation by 3 months of age, all had at least 2 re-screens. This data reminds us to proceed with the full diagnostic evaluation referral when the infant does not pass the first re-screen. * Guam EHDI Goal Three-all infants with hearing loss will receive early intervention services before 6 months of age. * Of the 13 infants referred to Guam Early Intervention Services (GEIS), 3 completed their IFSP by 6 months of age, 2 refused services by 6 months of age, 5 were not eligible for GEIS services due to normal hearing, and 3 are still pending their IFSP. Of these pending cases, 2 cannot be located, and 1 has a parent that has issues regarding services. * GEIS will have data linkage to monitor the timeliness of GEIS service delivery, and Audiological Associates has been linked with Guam Child Link Footer: Page 2 of 6 Page 3 to enter audiological evaluation results. The target date for these linkages is early summer. We are awaiting GMHA to convert the data from their electronic hearing assessment forms to facilitate data transfer. * Goal Four- all children with late-onset, progressive or acquired hearing loss will be identified at the earliest possible time, and reduce the loss to follow-up for high-risk infants. * This goal continues to be a challenge for Guam EHDI. There is literature that questions the validity of infants that are at risk for hearing loss coming back for 6-month follow-up. But we have chosen to continue this practice as a goal for this project. Guam EHDI strives to reduce the loss to follow-up for high risk infants to an average of 2% to10%. Currently, our rate is around 50%. Ms. Borja will discuss Guam EHDI outreach activities later in this presentation. * In response to Ms. Eclavea’s request for suggestions/strategies to help reduce the lost to follow-up for high-risk infants, Dr. DeCastro commented that actually 10% is an ideal rate to strive for, but is almost impossible, considering the diverse population and the fact that some mothers come to Guam to deliver their infants and then return home soon after the infants are born. He recommends striving for 30% as a reasonable goal. * Ms. Eclavea inquired about U. S. Naval Hospital’s procedure for tracking infants that have a high risk for hearing loss. Ms. Flores-Lobo responded that infants are screened before discharge from Naval Hospital. But follow-up of infants with a high risk if developing late-onset hearing loss is up to the individual primary care manager. * Ms. Eclavea also inquired about the policy at Naval Hospital regarding recurrent ear infections and when to refer for an audiological evaluation. Ms. Flores-Lobo responded that several factors hinge on whether a referral is made to the audiologist in these cases. The frequency and duration of the ear infections affect when an audiological referral is made. But a referral to Early Developmental Intervention Services (EDIS) automatically triggers a referral for an audiological evaluation as part of the evaluation process. * Ms. Eclavea suggested that Pediatricians could be polled to see what is the protocol used for making a referral for an audiological evaluation due to chronic ear infections in children. Dr. DeCastro recommended posing this question at the monthly meeting for Pediatricians. * Ms. Eclavea reported that she met with Captain Kellogg, Commanding Officer of U.S. Naval Hospital, Guam and his staff. An agreement was reached to draft a Memorandum of Agreement between Naval Hospital and Guam EHDI so that Guam can have comprehensive and accurate data regarding universal newborn hearing screening, follow-up and intervention. Footer: Page 3 of 6 Page 4 Ms. Eclavea added that the Naval Hospital audiologist should be invited to become a member of this Advisory. Captain Kellogg seems to want to be more a part of the community. * Ms. Cruz asked if the lost to follow-up in the Micronesian Island communities is part of a bigger cultural issue. Ms. Eclavea responded that it could possibly be part of the reason for the lost to follow-up in those communities, or it could be partly because the families do not understand the importance of newborn hearing screening. Ms. Eclavea added that a meeting was held with the leaders of the Chuukese Association. In keeping with their customs, the leaders will take the information about the importance of early screening, detection and intervention for hearing loss back to their group and will share the information with the Chuukese community. That is how information is disseminated in their culture. All the other Micronesian communities could be contacted as well, to spread the word on the importance of early hearing screening, detection and intervention for hearing loss. * Ms. Borja updated members regarding the status of public awareness materials. The high-risk posters were received from the printer and will be disseminated to all the clinics. The brochures about follow-up screening will be sent to the printer after final edits are made. The Guam EHDI website is completed and functioning. However, there are still some areas that still need to be updated. Any feedback from the members is welcomed. * Goal Five- infants with hearing loss will have a medical home and parent-to-parent support. * The pediatrician that is responsible for the medical care of the newborns at GMHA is often not the infant’s primary care physician after discharge from the hospital. This creates a challenge in establishing the infant’s medical home from the birthing site and continues to be a challenge. At every level of service, the medical home needs to be checked until one is established. * One possible strategy would be to connect with the pediatricians on sharing information regarding the medical home. * Another strategy would be to work with the medical assistants at Public Health, as well as the military community. * Ms. Cruz reported that a meeting took place with several Parent to Parent Support Group members and decided that since communication and meeting with parents over the summer has been difficult due to children being out of school and some families are on vacation; the next parent meeting will be in the Fall. Tentative plans are for a picnic or informal setting where parents can be more relaxed which might increase parent participation. Other plans include inviting the older students from the Hard of Hearing classes to organize a mentoring program for children. Footer: Page 4 of 6 Page 5 * Ms. Santos recommended involving the personnel that work with the Hard of Hearing classroom and students in setting up this mentoring process, because activities could be set up to encourage mentoring. ?? Mr. Edmund Cruz recommended involving Parent Agency Networking also because of their connection with the older Hard of Hearing community. Additionally, he recommended the parent group look up the Parents Helping Parents organization on the internet for additional guidance. Ms. Eclavea added that maybe the Guam EHDI website could include a link to the Parents Helping Parents website. * Ms. Cruz reported that the parent group is looking at becoming a non-profit organization which would open more opportunities for the group, and connect with Guam Legal Services (GLS). GLS has contacted her about doing a short presentation to the parents at the next parent meeting. Dates, times, and topics for meetings this year will be forthcoming. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. * Mr. Joseph (JJ) Mendiola reported that: 1. Vince Quichocho at GMHA is working to align data fields that will be uploaded into the Guam Child Link system. 2. Sagua Managu currently inputs data into Guam Child Link for more accurate and detailed information in all the fields for each infant. Mr. Mendiola manually checks the information from Sagua Managu for any possible errors. Thus far, errors have been minimal. 3. GEIS-PEDS and Central Public Health is working on their login and passwords, and how they will access Guam Child Link. This process is expected to be completed by the end of July. Training on data entry and access will commence thereafter. * Ms. Eclavea added that Public Health is working with the Social Security Administration to get the electronic birth certificate registry established. The participation in this registry will be optional and will produce an inaccurate registry. A required participation in this birth registry will be a better option. There is a need to revisit this issue with Public Health regarding linkage of Public Health records and the optional birth registry. Over half the EHDI programs across the United States link with the state birth registry for data. * Ms. Eclavea reminded members that the Office of Performance Review will evaluate the Guam EHDI: Phase II project from August 13-17. The members were asked to refer to the Performance Review Protocol handout in their packets. Three performance measures were agreed upon and will be analyzed by the team. Restricting and contributing factors were stated and reviewed for each performance measure. Page 5 of 6 * Additionally, Ms. Eclavea reported that from August 13-17, the National Center for Hearing Assessment and Management (NCHAM) is sending Ms. Kim Aeillo, an audiologist consultant to provide technical assistance and training for the audiologists, nurse screeners, and Guam Early Intervention System staff, and to promote the Colorado Hearing Resource Coordinator (CO-Hear) curriculum, for a trained contact person that can help families work through any challenges or issues they face working with a child with a hearing loss. Ms. Aeillo can also be available to speak to the parents. Ms. Triolo will notify Ms. Eclavea of two dates available for Ms. Aeillo to provide technical assistance. * Ms. Flores-Lobe recommended that Ms. Aeillo help bridge the gap between the audiologists and the Ear, Nose and Throat (ENT) specialist to standardize treatment and medical care given to a child regarding use of hearing aids. For example, there is confusion regarding who decides when hearing aids are needed for a child that might have hearing problems that require medical intervention. Sometimes GPSS can make the call for hearing aid use, depending on the audiologist’s report. The audiologists sometimes say the ENT makes that determination, and the ENT says the audiologist should decide when hearing aids should be used. * Ms. Eclavea is negotiating with a team of audiologists to provide support to GPSS on a quarterly basis, but it is still in the planning stage. The meeting was adjourned at 1:15 p.m. Footer: Page 6 of 6