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 24/26 Dean Circle • 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 2nd Quarterly Meeting Tuesday, September 12, 2006 Hilton Guam Resort & Spa Members Present: Members Not Present Elizabeth Borja Belinda Gonzalvo Edmund Cruz Lenny Joseph Ann Marie Cruz Glenda Leon Guerrero John Cruz Joseph Mendiola (Joe) Dr. Manuel De Castro Kerina Oshiro Elaine Eclavea Dennis Triolo Joyce Flores David Zieber Bridgette Flores-Lobo Margarita Gay Victoria Guiao Lina Leon Guerrero Dr. Robert Leon Guerrero Laura Taispic (for Pat Mantanona) Joseph Mendiola (JJ) Avelina Opena Victoria Ritter Dr. Velma Sablan NotesMeeting was called to order at 12:00 PM 1. Ms. Joyce Flores welcomed and had members introduced themselves. 2. Approval of minutes from last meeting with the changes on item 7 page 3, website address www.guamedi.com, and on item 6 page 3 details of information of the presentation and if not available in binder to let Ruth Leon Guerrero know and she will provide copies. 3. Ms. Eclavea explains the Outcomes and the Goals for the purpose of Guam EHDI. Phase II, Year 1 and to continue input strategies and development of the project and to share data from April 2006 through July 2006. 4. Goal One – minimize referred rates for infants returning for 2nd screening. a. GMHA getting most babies discharged. b. FIS (Fail Initial Screen) numbers continue to be in the means which has improved from the first year which babies were being referred almost close to half of babies tested, continue to move numbers below 10%. Dr. Leon Guerrero asked how we were able to decrease from 50% down to 17%. Ms. Eclavea, on going trainings with nurses on Saturdays and multiple opportunities to practice tasks at PEDS and Ms. Ritter who is primarily stationed at the hospital continues training with the nurses and that she will do the last screening follow up before babies get discharged also incentives with the nurses and closely working with the head nurses give them a monthly reporting by screeners who is doing well. Dr. Leon Guerrero asked if any backup incase Ms. Ritter is not available. Ms. Eclavea, Mr. Toves will be back up for Ms. Ritter and also all nurses at each shift try to screen to get a pass before baby is discharged. c. Sagua Managu – Continue do more training due to new staff on board and Sagua does there 2nd screening twice a month. Ms. Ritter visits every other day. Additional Suggestions: o Dr. Leon Guerrero, someone we think has good skills in screening ask them, especially if Ms. Ritter is gone, to do the follow-up. d. Lost to follow up – monitoring very closely to have families come back for second screening. For US Naval Hospital everything is computerized according to Ms. Lobo and easy to locate. Ms. Leon Guerrero suggest to link with the public/federal assistance program if we find patience that are on the program, food stamp office has been very helpful with Sagua Managu in the past. Ms. Lobo suggests that they sign a card with name and contact number only for those who fail the initial test. Ms. Eclavea hoping to link up with GMHA for better demographics and will continue different strategies. 5. Goal 2 & 3: Four referrals from April 2006 to July 2006, better in screening or losing a lot of children who are not returning, and Goal 3 share the same information having hearing loss and was referred to Guam Early Intervention trying to bring it up from 10months to 3months of age. 6. Goal 4: Late onset – Ms. Ritter, ones refuses service are they considered lost to follow up, Ms. Eclavea no should be listed as a third category. Ms. Lobo asking if there is a portable OAE that can travel instead of them coming to you, you go to them. Ms. Eclavea, it has been done however Mr. Zieber, Audiologist does not recommend it be done at home due to noise needs quite place for a good result. Ms. Taisipic mentioned that they offer transportation to be picked up at home and be brought up to office for screening. Ms. Ritter, mentions Central Public Health is being used every 2nd of the month for re-screens and working with Ms. Linda Denorcey for the Northern Public Health “Well Baby Clinics” 7. Goal 5: Parent to Parent access to medical home and Dr. Cate McClain’s technical assistance visit to Guam access to Medical Home. a. Ms. Eclavea sharing Dr. McClains visit and her consulting with the families, and challenges and not a good follow up between physicians when they make referrals to getting feed back from Early Interventions and what the early intervention part is. Ms. Eclavea mentions to bring up to the Inter Agency Council members how to make policy & procedure to make it more easier and also protecting the privacy of the families so physicians can get more information on the child. Ms. Eclavea asking Dr. DeCastro how he gets his reports he only gets verbal from Early Intervention. Dr. Leon Guerrero suggest asks for electronic and if they don’t do that get it verbally and is not a consistent process, and as providers sometimes we forget services are available. Ms. Lobo, report becomes medical records at Naval Hospital and can be obtain each time. Ms. Taispic IFSP copies given to families and stress the importance to give the Doctors. Ms Eclavea shares the signed consent and release of information at the hospital for the EHDI tracking & surveillance, b. Parent to Parent Support Group – Ms. Cruz sharing parent orientation meeting on August 26, 2006 with service providers and each other. Not much response for attendance but a very good event. Ms. Eclavea sharing that this is the first time the Parent Support Group took ownership and have 14 members and are listed in the directory of services. Ms. Cruz will be attending the “Family Support” training conference in Salt Lake City, Utah. 8. Guam EHDI Data Tracking & Surveillance System. a. Five babies have been identified b. PCHL (Permanent Child Hearing Loss c. Chuukese smaller ethnic group show High No Show Rates. d. Each baby born at GMHA will be given a number, and will be done electronically and hope to reach each baby by 100% e. Report should be able to provide information per child. f. Summary by month, total of both sites (SM & GMHA) and hopefully Naval Hospital can be provided and will be able to provide babies that did not show up for appointments. g. Focus of the grant will be follow-up. h. Dr. Leon Guerrero are we able to hook up with Public Health to look into the immunization due to back in the olden days one of the risk of hearing loss was mumps. Dr. Sablan, one the linkage is done and MOA is signed with Sagua Managu ready to initiate electronic reporting, GMHA linkage will be before the end of the month, hopefully. This is the first linkage that will actually occur and template will be provided to Public Health. Due to turn over at GMHA and hope to talk to the folks involved and let them become aware efforts and what it entails and hopefully the linkage can be program into this process and agencies can share this data. The capability is there it’s just the commitment of the large amount of funding for the extend of there data base. Hopefully be able to branch out. GMHA is at the verge but because of funding problems with maintenance and continuation. It may be slow but will be seen to happen. i. MOA – DPHSS, GMHA, GPSS/GEIS, and SAGUA MANAGU - have been written up with the exception of SAGUA MANAGU SIGNED. 9. Public Awareness – Ms. Borja sharing updates on materials i.e., brochures, posters, mail out notices, that will be distributed through out the community in the different languages and any inputs that the committee would like to add on. Some materials are still in draft forms. 10. Guam EHDI Website – sharing with the committee website and launch date scheduled for September 26, 2006 but still needs more input i.e., more pictures, and more general information, still building at this time. Suggest a message board where parents can chat with each other and should be reader friendly. 11. Dr. Sablan - a. New Grant called “Training and Retaining Great Early Intervention Teachers”. Grant will be submitted to OSEP. Federal Government will award 14 awards across the 50 states and territories, points in our favor because we are almost 100% minority institution; the grant will be funded at $200,000.00 a year for four years. b.