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 4th Quarterly Meeting (Year 2) Monday, April 28, 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 Mr. Joseph Mendiola (Joe) Ms. Joyce Flores Mr. John Cruz Ms. Margarita Gay Mr. Mario Josef Dr. Velma Sablan Ms. Pat Mantanona Ms. Lenny Josef Mr. David Zieber represented by Ms. Bobbie Maguadog Mr. Dennis Triolo represented by Ms. Polly Triolo Dr. Manuel De Castro Mr. Edmund Cruz Members Absent: Dr. Robert Leon Guerrero Ms. Bridgette Flores-Lobo Ms. Josephine Santos Ms. Belinda Gonzalvo Guam EHDI Staff Members Present: Ms. Elaine Eclavea Ms. Vicky Ritter Mr. Joseph J. Mendiola (Jay) Ms. Lizzy Borja Ms. Ruth Leon Guerrero Guest: Ms. Evelyn Claros, GEIS Dr. Gloria Weddington, San Jose State University Meeting Notes Meeting was called to order by Mr. Joe Mendiola, Co-Chairperson, at 11:55 a.m. 1. Mr. Joe Mendiola requested for members to review the minutes of the last advisory committee meeting on January 15, 2008. * Ms. Maguadog, representing Mr. David Zeiber, read a clarification statement by Mr. Zeiber in reference to page 6, 4th bullet, 7th line. The sentence should read, “Mr. Zieber is not comfortable dealing with infants, and the other Footer: Page 1 of 6 Page 2 audiologist feels obligated to continue evaluating infants due to the lack of other options for families. Mr. Zeiber told Pat Mantanona, Elaine Eclavea and Vicky Ritter in July 2007 he “was not comfortable” because he has not been trained in electrophysiological testing and lacks the required practical experiences; In addition, he told them, it would not be professional and would be unethical for him to diagnose (using electrophysiological tests) without proper training and practical experience.” * The minutes were approved with the above changes. 2. Mr. Joe Mendiola requested members and staff to introduce themselves. * Mr. Joe Mendiola 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 discussed the highlights of the National Early Hearing Detection and Intervention (EHDI) Conference in New Orleans, Louisiana, on February 25-26, 2008. * Tele-Health and EHDI: An Australian speaker presented about how Australia has provided and improved communication, consultation, and intervention services to their remote areas using video cameras and available electronic technology. * Issues with Lost to Follow-up and strategies used to reduce this loss: These issues are a major problem across the country. * Increase of EHDI and Health Resources and Services Administration (HRSA) funding: Unlike other federal programs that are seeing cuts in funding. * Collaboration with National Association for Public Health Statistics and Information System (NAPHSIS): There is a big push nationwide for linking vital statistics and electronic birth certificates with EHDI programs. Dr. Sablan added that NAPHSIS is coming out to the Pacific and hopefully Guam, to help move Guam towards electronic birth certificates to improve data collection that would be linked to Guam EHDI. This process relates to issues of national security. * Increase awareness of types of communication options available for families: * Training of Guam Early Intervention System (GEIS) staff was provided by Ms. Eclavea. 4. Ms. Eclavea continued with a progress report on Guam EHDI: * Personnel changes were made due to the passing of Kerina Oshiro. Dr. Velma Sablan will resume Ms. Oshiro’s role as Project Evaluator, and Dr. Heidi San Nicolas will be the Principal Investigator. * Incentive program continues for nurses. * Panels have been ordered and shipped to use at GMHA for soundproofing modifications to two rooms. Footer: Page 2 of 6 Page 3 * Challenges: * Lack of a pediatric audiologist * Lack of data sharing with U. S. Naval Hospital continues to be addressed. Data that includes Naval Hospital infants reduces our screening rate for Guam to 87%, down from 95% to 100% excluding Naval Hospital births. * Transient populations and multicultural diversity is being addressed through public awareness materials targeting this issue. * Implementing the medical home concept is being addressed through training, recently by Dr. Brian Que. * Ms. Eclavea spoke about tips that Guam has learned from other states. As we reach objectives and goals, we must not forget to continue monitoring to insure that slippage does not occur, because that is what happened in California. It is an ongoing process to continue meeting goals and objectives. 5. 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, November 2007 to February 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 is currently screening at 97-99%. Of these, 10-15% failed the initial screening (FIS). Sagua Managu screens their infants at 93-100%, and has a FIS rate of 8-23%. The combined FIS rates from November 2007 to February 2008 average at 14%. * The total Lost to Follow-up rate of re-screens for GMHA and Sagua Managu is currently at an average of 14%. * Dr. Sablan suggested that instead of looking at the FIS rate, we need to look at the ethnic distribution of infants that are lost to follow-up, because we need to know which ethnic group has the highest loss to follow-up rates so we could target brochures and strategies toward that population. * Ms. Lina Leon Guerrero recommended also looking at data on the socioeconomic status of infants that are lost to follow-up, and target issues that stem from that. * Dr. De Castro voiced a question as to the reason why referral rates are higher at Sagua Managu with a birth population of around 40 babies a month, compared to GMHA that has a birth population of around 200 babies a month. * Ms. Lina Leon Guerrero responded that Ms. Ritter continues training with the nurses, and since referrals do not necessarily come mostly from one nurse, Footer: Page 3 of 6 Page 4 they continue to assess the reason for their refer rates, unless they are screening too early. * Dr. Sablan added that she and Mr. Jay Mendiola will look to see if they could see any correlation from refer rates through the ChildLink data in recent months. * 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. Eclavea noted that we are meeting our timelines with the 6 babies born from November 2007 to February 2008. An issue arose of babysitting other children so families can make their rescreening or ABR appointments for their infant. If arrangements are made ahead of time, parents can drop off their older children at PNG Daycare for babysitting purposes, and Guam EHDI will pay for babysitting. * Goal Three- infants with hearing loss will receive appropriate early intervention services before 6 months of age. * Ms. Eclavea reviewed the data of the 6 infants referred for diagnostic audiological evaluations (DAE) that were born from November 2007 to February 2008. One infant missed their diagnostic audiological evaluation (DAE) appointment. The other 5 infants all completed their DAE within the time frame set in the Guam EHDI goals. Three infants had an Individual Family Service Plan (IFSP) within the appropriate time, with the 3 pending an IFSP. * 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 November 2007 to February 2008. In November 2007, 26% of infants were lost to follow-up, with rates climbing to 48% in December 2007, climbing even higher in January 2008 at 65%, but was reduced to 50% for February 2008. * Dr. Sablan noted that this trend of lost to follow-up for high-risk infants is a problem nationwide. The next HRSA grant application will focus on this loss to follow-up infants. * Ms. Eclavea added that she met with the GEIS service providers staff to thank them and encourage them to continue supporting the Guam EHDI project and share data and to emphasize importance of finding at-risk infants to complete their 6-month rescreen. Footer: Page 4 of 6 Page 5 * Ms. Eclavea commented on the 2-hour presentation on April 25th to 14 staff members from the Northern and Southern Region Public Health Centers. After seeing data and after hearing about the impact on our local families regarding newborn hearing screening and follow-up, both Northern and Southern Region Health Clinic staff agreed to full implementation of hearing screening at their clinics to reduce loss to follow-up. Additionally, Dr. Weare at Southern Region Health Center commented that he is seeing the immunization cards coming in with the stamp of hearing screening results. * Goal Five- infants with hearing loss will have a medical home and parent-to-parent support. * Ms. Ritter discussed the trainings held for nurses in December 2007 and January, February and March 2008. For Northern and Southern Region Health Centers, full implementation with training anticipated to be completed by June 2008. * Ms. Flores discussed the anticipated parent event in September that would be a poolside “bash” at the Marriott Resort and Spa. A parent survey will be conducted to see what parents would like to see happen for the new grant year. * Ms. Lenny Josef discussed the highlights of the parent event on January 17th at the Marriott Resort & Spa, by Mr. Rick Mesngon, Parents felt this was a very worthwhile event, and turnout was good. * Ms. Lizzy Borja discussed updates on the radio ads, pamphlets, brochures, immunization stamp and posters generated for public awareness. Ms. Borja stated that the parent group is now known as the GEHDI Family Support Group. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. * Dr. Sablan discussed the new Center for Disease Control (CDC) Grant Application, called the Project Guam EHDI System Enhancement and Refinement (Guam EHDI-SER). She is awaiting word on the status of the grant award. The new CDC application will look at enhancing the ChildLink database, initializing regional collaboration and data sharing, electronic linkage with other regions, and look at how well services are being provided through review of case files. The areas of emphasis for this 2008-2011 grant will be in quality assurance, analytical plan, system performance monitoring, refine and expand web-reporting, and refine and enhance the Guam ChildLink system and linkages. Footer: Page 5 of 6 Page 6 * Ms. Eclavea discussed the upcoming CDC site visit that is tentatively scheduled for September. 6. Open discussion: * Dr. Sablan introduced an off-island guest, Dr. Gloria Weddington, a San Jose State University. Dr. Weddington discussed the impact of speech services to children with hearing loss. San Jose State is collaborating with the University of Guam on a Master’s Degree program in Speech and Language Pathology. Through this collaboration, in August there will be 12 new Speech and Language Pathologists (SLPs) from Guam, 3 from Saipan, and 2 from Pohnpei. To underscore the need for SLPs, Las Vegas, Nevada has 100 unfilled SLP positions in the school system. 1/3rd of the children are being serviced by unqualified professionals. Dr. Weddington thanked Guam, the University of Guam and Dr. Sablan for the opportunity to improve speech services for children in the Pacific. The meeting was adjourned at 12:55 p.m. Footer: Page 6 of 6