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 Tuesday, May 1, 2007 Hilton Guam Resort & Spa Members Present Guest Present: Ms. Pat Mantanona Ms. Leeann Barcinas, SLP, Navy EDIS Mr. Joseph Mendiola (Joe) Ms. Mia Barrientos, GPSS, Deaf and HOH Program Mr. John Cruz Ms. Lenny Joseph Members Absent Ms. Ann Marie Cruz Mr. Edmund Cruz Ms. Avelina Opena Ms. Glenda Leon Guerrero Ms. Bridgette Flores-Lobo Dr. Velma Sablan Ms. Maria Victoria Guiao Ms. Kerina Oshiro Ms. Belinda Gonzalvo Mr. David Zieber Ms. Lina Leon Guerrero Ms. Joyce Flores Ms. Margarita Gay Mr. Richard Flores Ms. Josephine Santos Dr. Manuel DeCastro Dr. Robert Leon Guerrero Ms. Polly Triolo for Dennis Triolo Guam EHDI Staff Members Ms. Elaine Eclavea Ms. Vicky Ritter Ms. Lizzy Borja Mr. Joseph J. Mendiola (Jay) Ms. Ruth Leon Guerrero Meeting Notes Meeting was called to order by Mr. Joe Mendiola, Co-Chairperson, at 12:00 PM. 1. Mr. Mendiola requested for members to review the minutes of the last advisory committee meeting on January 30, 2007. The minutes were approved without any changes. 2. Mr. Mendiola also requested for members and staff to introduce themselves. A new member, Ms. Mia Barrrientos from the Guam Public School System, Deaf & Hard of Hearing Program was present. * Mr. Mendiola turned the floor over to Ms. Eclavea who thanked members for taking the time to attend. 3. Ms. Eclavea proceeded with the power point presentation (disseminated to members) by reviewing 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. 4. Ms. Eclavea proceeded with the last quarterly report (data and goals & objectives) for December 2006 to March 2007, using data submitted for the Year 2 Interim Progress Report for the CDC grant, submitted in March 2007. The goals of the CDC grant tie in with Guam EHDI goals, and as goals are discussed, highlights of the Interim Report will be shared. A copy of the Year 2 Interim Progress Report is included in the packet for review. * 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 over 95%. Sagua Managu continues to screen all their babies born, unless they are transferred to GMHA where their hearing screening is done. * GMHA babies that failed initial screening (FIS) are improving and is currently in the teens percentage-wise, with rates in March 2007 at 11%. * The FIS percentage at Sagua Managu Birthing Center is improving, with March at around 15%. * Ms. Eclavea reported that the Re-screen Loss to Follow-Up continues to show improvement. In December, the return rate for GMHA was at 29%, while in March, the loss to follow-up dropped to 5%. The GMHA infants who fail the initial screening are referred to Guam EHDI nurse screener for the 2nd screening, which is conducted at the PEDS center. * Infants born at Sagua Managu get their 2nd screening at the clinic. In December, Sagua Managu showed one infant that did not return for follow-up. * Some infants lost to follow-up receive their second screening at Central Public Health, and progress is being made in implementing screening at other Public Health Centers, to catch more of the infants lost to follow-up. * One of the issues brought up by CDC and HRSA at the last annual EHDI conference was the confusion with the definition of the number or percentage screened by one month of age. Guam EHDI looks at the date of the last screening. The total number of infants reported for Guam does not include Naval Hospital yet. Therefore, our records show 92-93% of our infants are screened before 1 month of age, using our definition. * Ms. Opena reminded members that included in the total birth rates are those babies that are premature and therefore we will not be able to achieve 100% rates. Ms. Eclavea responded that we need to find a way to document those infants that are transferred off-island for medical reasons, to remove them from our total which would improve our screening rates. * In the Year 2 Interim Progress Report, Goal One is reported as in progress and we continue to monitor all newborns screened by 1 month of age, with our rates at 92-93%. * Strategies that are being continued to monitor screening rates are verification of screening results at birthing sites, monitoring of quarterly incentives, and providing monthly screening reports to the GMHA head nurses and Sagua Managu. * Guam EHDI Goal Two- all infants who screen positive will have a full diagnostic audiological evaluation by 3 months of age. We are currently on target in this area. There were nine babies born from May 2006 to March 2007 that were referred to the Guam Early Intervention System (GEIS) for full audiological evaluations. As stated in the Interim Report, of these 9 infants, 8 completed their audiological evaluations by 3 months of age, with one baby born in March 2007 awaiting their appointment. * Guam EHDI Goal Three-all infants with hearing loss will receive early intervention services before 6 months of age. * Two of the 9 infants referred to GEIS had their IFSP completed by 6 months of age; 2 refused services of GEIS by 6 months of age; 1 infant was not eligible for GEIS services; 3 are pending IFSP completion (1 is over their timeline, and 2 still within the timeline); and 1 is still awaiting DAE as a new referral. * Guam EHDI 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, and reduce the failure to return rate from 82% to between 2-10%. * The loss to follow-up of high risk infants have improved to a 54.5% average this quarter. These are infants that have a greater chance of late-onset hearing loss. Incorrect demographic information continues to be a major factor in our loss to follow-up rates. * Currently, Guam EHDI continues to meet monthly with GEIS to develop high-risk procedures, and monitor the follow-up of these infants. In the next few months we are working to get public health centers to have a tracking & surveillance system in place to electronically get on the data system and see what the risk factors are for a specific infant, update demographic information to reduce loss to follow-up, and complete the 6 month re-screen. * Ms. Gay added that the WIC program should be included in finding infants lost to follow-up because they are finding that infants that have never seen an MD since birth are being referred to the clinics. It is now mandatory for immunizations of the infant to be up-to-date before WIC services can continue. Ms. Eclavea commented that she would schedule a meeting with the WIC department to further this discussion. * Ms. Borja informed the members of public awareness strategies for reducing loss to follow-up of high risk infants and increase return for re-screen of these infants. Mail-out cards were given to GEIS to use for 6 month re-screens, using general appointment dates/times open for parents to bring their child in, rather than specific appointments, as agreed on earlier. Ms. Ritter will work with GEIS on arranging this. Ms. Borja also informed the members that risk factor cards for health care professionals were disseminated. These may be used by the nurses to review the risk factors with parents during their infants’ checkup as a strategy to identify those high risk infants that need their 6-month re-screen completed and further reduce loss to follow-up of these infants. Additionally, Ms. Borja requested for final input on the high risk poster and follow-up brochure that was passed out. Following final input, they will be sent to the printer and will be distributed to clinics and the community. * Goal Five- infants with hearing loss will have a medical home and parent-to-parent support. * Connecting families with a medical home continues to be a challenge that Guam EHDI is working on. Ms. Borja stated that the only linkage is the data tracking system that will enables the agencies to identify those infants who failed initial screening, are referred for 2nd screening and full audiological evaluations and receive early intervention services. Linking with health care providers will take a while, partly because the medical home concept is new. Ms. Borja welcomed any suggestions in ways to fully implement the medical home concept for all our infants with hearing loss. * Ms. Leon Guerrero inquired if there has been any direct contact with pediatricians’ offices on this concept. Ms. Borja noted that there have been two medical home conferences to increase public awareness on implementation of a medical home for children. There was a presentation made to the Guam Medical Society about this concept by Dr. Catherine McClain in August 2006. Ms. Leon Guerrero commented that the pediatricians’ offices could be invited to a presentation that could be informal about Guam EHDI and talk about some of the available resources and public awareness materials and how it could be used in their clinics. They could suggest what might be useful for them. They would be the first “eyes and ears” that are going to help parents, as they establish a rapport with the parents. Especially the medical assistants and aids that speak the most with the families. They might be a good resource to tap and introduce yourselves to. * Ms. Borja continued by discussing the Guam EHDI website and the changes being made. There is a link to the Parent to Parent Support Group as well as a message board to leave a message, or for the parent organization to put up events, trainings or meeting, as well as a link to an informational brochure on newborn hearing screening on Guam. Ms. Borja will be the webmaster for this site. * Ms. Leon Guerrero added that Sagua Managu magazine could leave a little space for the Guam EHDI Parent to Parent Support Group to put out information on upcoming events or trainings they would like other parents of children with a hearing loss to know. * Ms. Flores-Lobo added that even the military could use a presentation about the program. Ms. Eclavea added that there is a meeting scheduled with Captain Robert Kellogg, Commanding Officer of U. S. Naval Hospital, and that topic could be brought up. * The Guam EHDI website has a link with GEIS and the Parent to Parent Support Group. GEIS has the contact information to connect their parents of children with hearing loss to the parent support group. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. * In the Year 2 Interim Progress Report, this goal has been met. Policies and procedures have been developed and fields in the Guam ChildLink data system has been matched to the birth certificate registry. Ms. Eclavea stated that she has a meeting with Mr. Camacho at DPHSS about timelines regarding electronic birth certificates. There is technical support available to DPHSS in linking with electronic birth certificates. Additionally, data is being used to identify infants in need of re-screening. When GEIS connects to the data system, they can verify and update information to minimize loss to follow-up. Finally, in the CDC Interim Report, under the CDC tracking & surveillance grant, Goal 7 looks at quality assurance. * Some challenges identified in the CDC Interim Report were the completion of the GMHA Memorandum of Agreement (MOA), which was signed in January 2007; the GPSS MOA is still in route for signature; the acquisition of the proper hardware for the linkages; accessing accurate demographic information; and access to the medical home and primary care physicians. * Ms. Mantanona inquired about a map to the family’s home that was obtained from the hospital. She felt this was another way of contacting the family if their phone number is unavailable or inaccurate. Ms. Opena responded that only when an infant must stay at the hospital after the mother is discharged, a map to the home is requested from the mother as part of the infant’s documents in case something happens to the baby and the family cannot be contacted by phone, a policeman can go to the home and inform the family to go to or contact the hospital. * Ms. Mantanona also inquired if the hospital is going “paperless”. Ms. Opena responded that right now GMHA is doing both electronic and paper, but will eventually move to being totally “paperless” within a couple years. There was discussion about losing access to documents after GMHA has only electronic access to information. Ms. Opena stated that access to records can be granted through an official letter requesting electronic access of a specific person for a specified reason. Ms. Mantanona questioned the need for a letter if there is already an MOA with GMHA for access to documents. * Mr. Jay Mendiola reported to the members that GMHA is currently piloting data entry of the hearing assessment form. At the end of the month we should have a dummy file uploaded into the Guam EHDI ChildLink system to practice the linkage with GMHA. * Ms. Eclavea added that the three data fields that were not currently being collected at GMHA at this time were the education level of parents, primary language of mother (to ensure informed consent), and birth defects. After meeting with Mr. Vince Quichocho and the head nurses, these four fields will now be collected. * Mr. Jay Mendiola continued to report that data entry training was conducted on March 20. 2007 at Sagua Managu. Data entry started as of April 1st, with data being verified at Guam EHDI. Sagua Managu will verify the numbers of babies entered to ensure it matches their numbers of infants born. Computers for GEIS and DPHSS have been purchased and we are awaiting delivery of the computers. Mr. Jay Mendiola will conduct the training on data entry at these locations where direct access will reduce loss to follow-up in re-screens and high risk infants. * Mr. Jay Mendiola continued reporting that Mr. Quansheng Song, consultant for the Guam ChildLink system, is coming at the end of the month to finalize the GMHA linkage and crosscheck the other linkage sites. * Parent training was discussed by Ms. Ann Marie Cruz. Two trainings were held regarding parent’s rights by Mr. Dan Somerfleck. The first meeting was so well-attended that a second meeting was held at Mr. Somerfleck’s office. He is also open to holding more trainings if parents would like, which would be held later this year. Additionally, an introduction to cochlear implant presentation was conducted on February 24th by Dr. Richard Fee. Five parents were in attendance. * Ms. Leon Guerrero inquired about what a cochlear implant is. Ms. Ritter explained that it is an implanting of electrodes in the cochlea (inner ear) that accesses and transmits sound. Ms. Eclavea added that a cochlear implant is not for everybody that has severe hearing loss, but it gives local families another option to consider. * Ms. Santos commented that in August 2007, the first cochlear implant will be done here on Guam. Ms. Eclavea noted that because intensive speech therapy is required after cochear implants, two courses are being offered this summer for speech-language pathologists and early interventionists in response to that need. Mr. Joe Mendiola inquired about qualification for a cochlear implant. Ms. Santos replied that qualifications generally are bilateral, sensorineural hearing loss with children that do not have cognitive delays, because sound has meaning and meaning has to be learned. Because cochlear implants are very expensive, insurance companies and Medicaid cover almost the whole amount. Ms. Eclavea added that she will arrange to have Dr. Fee come and make a presentation to the members. * Ms. Eclavea added that at the annual EHDI conference in March 2007, the movie “Sound and Fury” and its sequel was the highlight of the conference. The movie is about several adult members of a family that deal with the issue of whether or not they want a cochlear implant for themselves or their children. Each member shares their experience and views on the subject. * Ms. Cruz commends everyone that is working to make the cochlear implantation possible for Guam. Additonally, Ms. Cruz attended the annual EHDI conference with Ms. Eclavea and Ms. Opena. It was the biggest attended conference in its history. Ms. Cruz recommends it to any parent that can attend. It was great for networking and reconnecting with other parents of children with hearing loss, and other groups that are involved with these children. * Ms. Eclavea added that there is another conference coming up for parents on October 11 & 12, 2007. She will send out information regarding this conference later on. * Ms. Mantanona requested if these groups that attend off-island conferences give a short presentation on what they learned at the conference, what sessions they attended, and what useful information they learned. Ms. Eclavea added that they could do the presentation at the same meeting with Dr. Fee’s presentation. * Ms. Mantanona informed the group that GEIS has broken away from the cumbersome and confusing GPSS website and is starting their own website. The address is www.guameis.com. GEIS is hoping to have it up by mid-May, which would have a link to Guam EHDI. * Ms. Flores-Lobo informed the members that she could work to include Guam EHDI in the Naval Hospital’s waiting area, where a TV screen flashes a power point of public service announcements. * Ms. Borja reported that Guam EHDI has written a letter requesting to speak to the Mayor’s Council about Guam EHDI, and is now awaiting approval. Attempts are being made to contact the Federated States of Micronesia Consulates to make a presentation about Guam EHDI. * Mr. Jay Mendiola announced to the members about the Office of Performance Report Site Visit by HRSA scheduled for the week of August 13th. Three performance measures were decided upon, and data will be sent regarding these measures. This is the first time a hearing screening program has been evaluated by HRSA. HRSA could decide to use only two of the three performance measures, depending on the graph of the data sent. Ms. Gor Yee is the lead evaluator on the team of three. * The CDC EHDI survey in the packet was submitted March 15th and sums up all the data available for 2005. The reporting format was different from previous years. This data synopsis for Guam was shared at a regional meeting at the EHDI Conference with Dr. Leon Guerrero, Dr. Heidi San Nicolas, and Ms. Eclavea. At first, the synopsis shows that Guam’s hearing screening rate is around 70%. Because the report looks at total births and we do not report on Naval Hospital infants, it draws the screening rates down. We are revisiting the issue of obtaining data from Naval Hospital for reporting purposes. Alaska and other areas have similar issues. CDC is under pressure to have good, consistent data from one state to another. * There was discussion on the high-risk public awareness poster and the simplicity of language for most parents to understand. * Ms. Gay is requesting that those infants that have special health care needs be included in their registry for contacting when special related services are going to be available at Public Health, or for follow-up purposes. * Ms. Mantanona made an announcement about the “Check Me Out Fair” on Saturday at Wettengel Elementary School from 9 AM to12 Noon. * Ms. Guiao requested if computers could be made available to GMHA OB Ward & Nursery due to the increased demand for computer use with data entry. Ms. Eclavea responded that Mr. Jay Mendiola will connect with Mr. Vince Quichocho to see if enough computers are being supplied to the wards for the increased computer access needs. The meeting was adjourned at 1:20 p.m. Page 7 of 7