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 3rd Quarterly Meeting Tuesday, January 15, 2008 Guam Marriott Resort & Spa Members Present: Ms. Lina Leon Guerrero Ms. Maria Victoria Guiao Ms. Glenda Leon Guerrero Mr. Richard Flores Ms. Ann Marie Cruz Ms. Avelina Opena Ms. Bridgette Flores-Lobo Ms. Joyce Flores Ms. Margarita Gay Dr. Velma Sablan Ms. Pat Mantanona Dr. Robert Leon Guerrero Ms. Lenny Joseph Mr. David Zieber represented by Ms. Bobbie Maguadog Mr. Dennis Triolo represented by Ms. Polly Triolo Members Absent: Mr. Joseph Mendiola (Joe) Dr. Manuel DeCastro Ms. Josephine Santos Mr. Edmund Cruz Mr. John Cruz Mr. Joseph J. Mendiola (Jay) (off-island) Ms. Belinda Gonzalvo Guam EHDI Staff Members Present: Ms. Elaine Eclavea Ms. Vicky Ritter Ms. Lizzy Borja Ms. Ruth Leon Guerrero Guest: Ms. Terry Fejarang, Guam CEDDERS Meeting Notes Meeting was called to order by Ms. Joyce Flores, Co-Chairperson, at 1150 a.m. 1. Ms. Flores requested for members to review the minutes of the last advisory committee meeting on October 9, 2007. * Ms. Triolo requested a correction of an inaccurate statement, on page 6, 4th bullet, 7th line. The sentence should read, “Mr. Zieber is not comfortable dealing with infants, and the other audiologist feels obligated to continue evaluating infants due to the lack of other options for families.” * Ms. Mantanona commented that the words “several times” should be stricken from the last line on page 6, 5th bullet. She provided clarification regarding the case of parents frustrated by the lack of a confirmed need for a hearing aid and that the hearing loss could not be definitively stated by the audiologist. Footer: Page 1 of 7 Page 2 Additionally, some reports did not go back and forth for feedback. The parents took their child to the Philippines for an audiological evaluation, a determination of hearing loss was made, and the child received hearing aids. Further discussion was made on this issue. * Ms. Triolo clarified on the 2nd bullet, 4th check mark, regarding physicians complaining that they do not get feedback on their audiological referrals. Audiological Associates does give a copy of the audiological report to the referring physician. * The minutes were approved with the above 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 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, September - November 2007. 4. Ms. Eclavea discussed the updates on the advisory recommendations from the last meeting: * The immunization stamps indicating hearing screening results are completed. The nurses will be trained on the use of the stamped immunization cards. * A meeting with the Women, Infants and Children program has been scheduled. * Copies of hearing screening results are being sent to primary care providers (PCP), if known. * Ms. Ritter discussed the results of the participation of Guam EHDI at the recent GEIS “Check Me Out Fair” held at Tamuning Elementary School. 40 hearing screenings were performed, with 4 children being referred and given appointments for audiological follow-up at the Pediatric Evaluation & Developmental Services (PEDS). All 4 children referred for further evaluation were not registered participants. Apparently, there were several families that participated at the fair but did not register. There was further discussion on this matter. * Ms. Mantanona added that the Parent Services section of the Guam Public School System, Special Education Division, is now in charge of the “Check Me Out Fair”. * Ms. Mantanona indicated that the Guam Early Intervention System (GEIS) could send letters out to doctors to ask them to update demographics of a specific child that could not be contacted, when that child comes to his clinic. Further discussion ensued. Page 3 * 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 is currently screening at 97-100%. Of these, 11-15% failed the initial screening (FIS). Sagua Managu screens all their babies except the infants transferred to GMHA. However, data is showing that Sagua Managu is currently screening their infants at 75%, which is much lower than last quarter, and has a FIS rate of 21% (much higher than last quarter). Ms. Leon Guerrero stated she is fairly sure those numbers are inaccurate and will verify the percentages at Sagua Managu and contact Ms. Eclavea. Note: Ms. Leon Guerrero later verified that their screening rate is at 95%, and their FIS is 21%. * The total Lost to Follow-up rate of re-screens from September to November 2007 for GMHA and Sagua Managu continues to be reduced, and is currently at an average of 18%. * A meeting with GMHA Head Nurses was conducted with the goal to reduce the FIS to less than 10%. The new strategies that were recommended by the nurses were: * Sound proof 2 rooms at GMHA * Additional training for nurses with high referral rates (FIS) * Include training stipends * Dr. Sablan questioned why the sound proof rooms have not been completed, because it was in progress two years ago. * Ms. Eclavea explained that the process involved the collaboration of several people, and when the grant year ended, the process stalled. However, she will ensure the sound proof rooms are completed. * Dr. Sablan suggested that if individual screeners get feedback on their screening rates, it might help them monitor their own referral rates. * Ms. Eclavea added that Mr. Jay Mendiola, Data Coordinator, gives the head nurses a monthly breakdown by screening site and individual screener refer rates. The head nurses can disseminate this information to the screeners. * Ms. Ritter suggested that she could also use this monthly breakdown of refer rates and assist in disseminating this information to the screeners. * Ms. Eclavea suggested conducting a “hearing fair”. * Dr. Sablan added that along with the hearing fair, a local proclamation of “Hearing Screening Day” could be attained. * Ms. Triolo commented that May is “Better Hearing Month”. * Goal Three- infants with hearing loss will receive appropriate early intervention services before 6 months of age. Footer: Page 3 of 7 Page 4 * Ms. Eclavea reviewed the data of the 10 infants referred for diagnostic audiological evaluations (DAE) that were born from March to October 2007. * The father of one of the infants refused services because “baby can hear”. * The other 9 infants all completed their DAE and Individual Family Service * Plan (IFSP) within the time frame set in the Guam EHDI goals. * • Ms. Mantanona requested assistance from Guam EHDI in meeting these DAE timelines. She asked if in those cases where time is running out to meet GEIS referral timelines, Guam EHDI could possibly give GEIS their Auditory Brainstem Response (ABR) appointment dates at Audiological Associates to expedite completion of ABR evaluations. * Ms. Eclavea responded Guam EHDI could assist GEIS in obtaining more immediate ABR appointments when needed. * Ms. Ritter requested that she be informed of any changes in ABR appointments of those infants referred by Guam EHDI to GEIS. * Ms. Mantanona responded affirmatively. * Goal Four- infants and children with late onset, progressive or acquired hearing loss will be identified at the earliest possible time. * Ms. Eclavea reviewed the percentage data of infants lost to follow-up from September to November 2007. In September, 42% of infants were lost to follow-up, but in November, the rate improved and was reduced to 26%. * Ms. Eclavea requested for ideas on new strategies to continue to reduce the infants lost to follow-up. Currently, Guam EHDI continues to monitor these infants through GEIS, but data regarding these infants is minimal, largely due to FERPA restrictions requiring written consent for data to be collected. * Ms. Mantanona added that she will continue to collaborate with Guam EHDI in monitoring and overcoming this challenge. * Goal Five- infants with hearing loss will have a medical home and parent-to-parent support. * Ms. Ritter discussed the 4 trainings held for nurses in November on the GSI- 70 equipment and newborn hearing screening. Three trainings were held at GMHA to 12 nurses. A training was held at Sagua Managu for one nurse. She also commented that training could be done at odd times to accommodate nurses, if needed. * Ms. Flores discussed the parent events that occurred in November, and the upcoming parent event scheduled for January 17th at the Marriott Resort & Spa, by Mr. Rick Mesngon, on “Parent Mentor”. * Ms. Joseph added that this upcoming event was organized due to the high turnout of parents at the last November parent group meeting. The parents Page 4 of 7 Page 5 enjoyed the family-oriented event and learning that took place, and requested for more events. Ms. Joseph stated that Mr. Mesngon did stress that the entire family must be involved to increase communication with the child with hearing loss. * Ms. Eclavea discussed the outcome of a meeting with the Parent to Parent Support Group, and the goals and objectives that were discussed. The main goal of this group is to increase parent involvement and parent members. They brainstormed outcomes, goals and objectives and possible activities for the group, which were: * Goal 1: Parents of children with hearing loss will have the knowledge and skills to advocate for services. The objective would be to implement a public awareness campaign on Guam EHDI. Activities were discussed. * Goal 2: Parents will have increased knowledge and skills in working with their children with hearing loss. The objective would be to conduct parent training on the Individualized Education Plan (IEP)/IFSP process and strategies in working with children with hearing loss. Activities for this goal were discussed. * Goal 3: Parents will access a variety of parent to parent supports such as mentoring, small group sharing, access or linking to other resources. The objective would be to develop guidelines (resource directory) for providing a variety of parent to parent supports. Activities for this goal were discussed. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. * Ms. Eclavea reported for Mr. Jay Mendiola, who is off-island. She stated: * The linkage with GMHA is almost complete. Mr. Quansheng Song, consultant for the Guam ChildLink data system, is awaiting files from Mr. Vince Quichocho to begin the conversion operation needed for uploading data from GMHA into Guam ChildLink. * The Department of Public Health & Social Services (DPHSS), Central Region Health Center (CRHC), is almost complete. The staff needs to allow Mr. Jay Mendiola access through their firewall. * Ms. Eclavea is awaiting word from Ms. Denorcey, Administrator for Northern and Southern Region Health Centers, to begin training nurses to perform hearing screening at their clinics. She will follow-up with Ms. Denorcey. * Ms. Borja provided an update of the public awareness campaign: * Radio ads are in the process of being completed. * Brochures and posters are completed and ready for dissemination. Page 5 of 7 Page 6 * Frequently Asked Questions (FAQ) for Professionals has been drafted and is being reviewed. * Immunization card stamps are ready for dissemination and use. Ms. Ritter will train the nurses on its use at the birthing sites. * FAQ for parents, brochure on hearing and speech developmental milestones is in the process of being developed. * Sample of “Roadmap for Hearing Loss” displayed by Ms. Borja that will be developed. * Ms. Borja still needs more feedback from parents on what they would like to see in their Video vignette. She asked the parent Advisory members to meet with her briefly, after this meeting. The parents replied affirmatively. * Ms. Eclavea discussed the upcoming Center for Disease Control (CDC) technical assistance visit tentatively scheduled for April 21-23, 2008. The purpose of this visit is to meet and look at progress that has occurred and the future direction CDC Guam EHDI will take. * Dr. Sablan added that it is important to continue data collection, tracking and surveillance to help meet the goals of the grant. Guam EHDI is so far ahead of other EHDI grants in tracking & surveillance, especially with the GEIS collaboration. However, she is very concerned with Guam’s lack of an electronic birth certificate. Guam needs to push to get this. * Ms. Pat Mantanona stated that the birth statistics from the DPHSS is combined for the whole island. There is a need to have this data broken down by birth sites. 5. Open discussion: * Ms. Mantanona asked about those infants that have risk factors or are lost to follow-up, if there is a way to flag the chart when they are re-admitted to GMHA. She stated Ms. Treltas, the GEIS nurse, goes up to GMHA daily, and perhaps could obtain updated demographic information. Ms. Mantanona will discuss this avenue further with Ms. Treltas. * Ms. Leon Guerrero inquired if hearing screening is covered by insurance. * Ms. Eclavea responded affirmatively. * Ms. Leon Guerrero inquired on the status of data collection from Naval Hospital. * Ms. Eclavea replied that Ms. Leann Barcinas spoke to Captain Kellogg regarding dialog with Guam CEDDERS. Captain Kellogg said he will followup on this, but Ms. Eclavea states that there has been no response from Naval Hospital thus far. * Ms. Cruz reported on the group that formed out of Guam EHDI Parent to Parent Support Group, called Guam Positive Parents Together. The parents Page 6 of 7 Page 7 were involved in the Parent Information Resource Center (PIRC) that is having an open house at 2 P. M. at the J & G Commercial Center, which is in front of Paradise Fitness Center in Agana. Ms. Pauline Camacho is the Director of PIRC. Now that PIRC is open, it should have a link on the Guam EHDI website. * Dr. Sablan reported: * She is writing a Guam ChildLink Update publication. It will summarize Guam ChildLink data and national goals. It should go to community members other than the Guam EHDI Advisory, for example, the Governor or village Mayors, that should know and could use the findings from this update. * She is assisting the Federated States of Micronesia in writing an EHDI grant application. It will be a positive step towards networking support services, technical assistance, and regional collaboration. The meeting was adjourned at 1:20 p.m. Page 7 of 7