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 2nd Quarterly Meeting Tuesday, October 9, 2007 Guam Marriott Resort & Spa Members Present Dr. Manuel DeCastro 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 Ms. Pat Mantanona Dr. Robert Leon Guerrero Ms. Belinda Gonzalvo Ms. Lenny Joseph Members Absent Mr. Joseph Mendiola (Joe) (off-island) Mr. Dennis Triolo Ms. Josephine Santos Mr. Edmund Cruz Mr. David Zieber Mr. John Cruz Dr. Velma Sablan Ms. Lina Leon Guerrero Guam EHDI Staff Members Present Ms. Elaine Eclavea Ms. Vicky Ritter Ms. Lizzy Borja Mr. Joseph J. Mendiola (Jay) Ms. Ruth Leon Guerrero Guest Ms. Leann Barcinas, SLP, Navy EDIS Meeting Notes Meeting was called to order by Ms. Joyce Flores, Co-Chairperson, at 12:05 p.m. 1. 1. Ms. Flores requested for members to review the minutes of the last advisory committee meeting on June 26, 2007. * Dr. Leon Guerrero requested that acronyms be spelled out when they are initially used in the minutes. * Ms. Mantanona requested that these Advisory minutes be available to the members at least two days prior to the next meeting so that members have adequate time to review the minutes. Ms. Opena requested clarification whether the minutes would be sent by e-mail or paper copy. Ms. Borja responded that Ms. Ruth Leon Guerrero has the contact preference for each member and that the minutes could be disseminated by preference of the member. Footer: Page 1 of 8 Page 2 * 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 PowerPoint handout in their packets that was disseminated to members. 3. Ms. Eclavea discussed the Office of Performance Review (OPR) Report of the Guam EHDI site visit from August 13-17, 2007, referring to the OPR Report handout in the packet. It was noted in the report that because of the lack of data from U. S. Naval Hospital, the total percentages drop when taking into account all babies born on Guam. Discussions with Naval Hospital have stalled. The report cites restricting factors and contributing factors in the performance analysis of both performance measures. * Ms. Eclavea noted that the reviewers asked if Naval Hospital shares any data with any Government of Guam agency. • Ms. Gay added that Public Health only gets birth numbers and birth certificate information from Naval Hospital. * Dr. Leon Guerrero stated that with his experience in dealing with Naval Hospital through the years, collaboration depends on the Commanding Officer at the time. * Ms. Eclavea proceeded to discuss the restricting factors stemming from the lack of a pediatric audiologist on Guam. * Ms. Flores-Lobo recommended that a copy of the OPR Report be given to the Commanding Officer at Naval Hospital, so that he can see the restricting factors that involve Naval Hospital. 4. 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, April - August 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. * GMHA is currently screening at 98%. Of these, 15% failed the initial screening (FIS). Sagua Managu screens all their babies except the infants transferred to GMHA. Sagua Managu has a FIS rate of 6%, which is much improved from last quarter. * The total Lost to Follow-up rate of re-screens from May-August 2007 for GMHA has been reduced to 21%, and Sagua Managu has also been reduced to 4%. Page 3 * Ms. Mantanona shared data collected from Guam Early Intervention System (GEIS) of the total infants referred by Guam EHDI from July to October 2006. Of the 297 infants referred from Guam EHDI, 10 infants became GEIS babies, and 219 were terminated for various reasons: * 107 passed the hearing screening and developmental screener * 112 referral terminated (44 infants could not be located, 44 refused services or evaluations) * 10 infants entered the GEIS program (1 passed away, 1 turned 3 years old and transitioned out) * Ms. Eclavea added that the data GEIS presented correlates with our high-risk lost to follow-up (LFU) data * Ms. Eclavea continued with data sharing. Of the 972 infants born at GMHA and Sagua Managu from May-August 2007, 946 were screened, 143 FIS, and 936 were screened before 1 month of age (96%). * Additionally, Ms. Eclavea added that Guam EHDI continues to look for strategies to reduce the LFU for the high risk infants especially. Dr. Leon Guerrero suggested collaborating with Public Health through their Women, Infant & Children (WIC) Program and Immunization Clinic as a venue to connect with families that may need hearing screening follow-up. * Additionally, Dr. Leon Guerrero recommended that a copy of the hearing screening results be sent to the infant’s primary care physician. Giving the parents a copy for the primary care physician is inadequate, because in his experience, parents rarely produce the hearing screening results at a clinic visit, even when asked. * Ms. Eclavea added that when the Child Link database system connection to Public Health is completed, Public Health will have access to this information. * Ms. Joseph suggested that a flag be placed on the chart right at the hospital that denotes a child with risk factors for hearing loss, which could trigger a form letter from Guam EHDI notifying the child’s doctor of the child’s risk factors for late-onset hearing loss. * Ms. Mantanona is requesting support for hearing screening at the GEIS Check Me Out Fair, because long lines sometimes develop for screening, which deter parents from having the screenings done. * Ms. Ritter explained one difficulty with hearing screening at these fairs is the lack of an appropriate quiet room to perform the hearing screening, which results in numerous inconclusive results. Ms. Mantanona added that rooms can be set up in advance if the commitment to participate with the hearing screening can be secured. * Dr. DeCastro commented that most parents do come to their clinic visits with their child’s immunization card. If a sticker or stamp could be added to the Footer: Page 3 of 8 Page 4 immunization card that would give the results of hearing screening and risk factors, the chances of the information reaching the primary care physician is much greater than a separate form. * Ms. Mantanona inquired about the feasibility of connecting with Public Health’s outreach immunization mobile or bus that has access to a fairly quiet room to add hearing screening as part of the outreach program. Many families participate in these outreach immunization clinics, and some might need hearing screening follow-up. * Ms. Ritter inquired if it would be possible to streamline the process of attempts at second screening. If a child is screened at their 6-month follow-up and has inconclusive results, could a referral for a diagnostic audiological evaluation be initiated then, instead of repeated attempts to rescreen the infant. Sometimes parents don’t show up for the second attempt to screen, if they know the same process will be repeated, especially if they have no concerns about hearing at the time. * Ms. Mantanona responded that sometimes the repeat screening results in the child passing the screening, and that would have been an unnecessary expense if that step was by-passed. Additional concerns are the limited slots available for audiological evaluations, and the issue of GEIS being the “payor of last resort” for the audiological evaluations. Other avenues for payment must be explored before GEIS can pay for any evaluations, which can create more paperwork, hassle, and possible delay for the families. * Ms. Eclavea requested additional information on insurance coverage by the different companies from Ms. Gonzalvo. Ms. Gonzalvo inquired from Ms. Mantanona about the co-payment fee for these evaluations. Ms. Mantanona responded that families pay the co-payment, but GEIS would reimburse the families. * Ms. Flores-Lobo inquired about statistics on the percentage or numbers of high-risk infants that actually develop hearing loss. Dr. DeCastro responded that he has not seen any percentages given in the literature, only the fact that their chances of late-onset hearing loss is greater, and that the more risk factors a child has, the greater the possibility of late-onset hearing loss. Ms. Eclavea added that there is an issue regarding the refinement of the current high-risk factors at the federal level. Ms. Ritter inquired from Dr. DeCastro if he thought the high-risk factors that require 6-month follow-up should be refined or reduced. Dr. DeCastro replied that he does not have an answer to that question. * Ms. Mantanona inquired about making a short publication of real-life stories from families to provide interesting and pertinent stories that help make families understand the importance of hearing screening and follow up. Ms. Footer: Page 4 of 8 Page 5 Cruz responded that the parent group could be involved in obtaining stories for this publication. * Goal Five- infants with hearing loss will have a medical home and parent-to-parent support. * Ms. Eclavea commented that in the interest of time, she will skip Goals 2-4. * Ms. Ritter was asked by Ms. Eclavea to discuss the highlights of the presentation at the Pediatrician’s monthly meeting on July 12th. Ms. Ritter discussed: * The pervasive issue of the lack of feedback from their referrals to GEIS or Special Education. * GEIS needs to routinely obtain consent for release of information to the child’s primary care physicians. * The pediatricians agree that 5-6 ear infections a year for a child should trigger a referral to the Ear, Nose & Throat specialist. * When a parent has concerns about the child’s hearing, a referral is made to the audiologist. The physicians complained that they also get no feedback from these audiological referrals. * Older children can have their hearing screened at their clinic. * By a showing of hands, 4 out of 9 pediatricians say they practice the medical home concept. * The pediatricians felt that since they initiated the referral, and it is a medical condition, that they should automatically get feedback from the agencies. * Service gap between GEIS to Preschool intervention services, and the lack of feedback. * Ms. Mantanona added that there are situations where the pediatrician asked the parent to contact GEIS to have the child evaluated. That referral is technically a “self-referral”, not from the physician. Although it is a procedure for GEIS to ask parents to sign the authorization to release the evaluations and Individual Family Service Plan to the child’s physician, some families decline. Dr. DeCastro inquired as to what were the families’ concerns. Ms. Mantanona responded that sometimes the families say they will provide the information to the physician themselves when they take their child in for a checkup, and others do not want the daycare providers to know their child is receiving GEIS services. She will follow up to make sure her staff consistently request parents to sign the authorization to release information. * Ms. Ritter inquired whether the person that makes a referral to GEIS is entitled to feedback from the agency. The pediatricians had commented that Footer: Page 5 of 8 Page 6 they are the ones making the referral, so they should be able to get feedback from the agency. Ms. Mantanona responded that when parents call GEIS for the evaluation, it is not a referral from the physician. Additionally, a document from the physician that requests GEIS to evaluate the child and states the child has a medical condition would be beneficial in the evaluation process. The physician could have his nurse call GEIS and specify the child has a diagnosis of chronic ear infections and the child would qualify immediately for GEIS services. * Ms. Mantanona stated that for the children that are 3-5 years old, their timeline does not start until the parent signs the permission to evaluate the child. For GEIS, the timeline starts when they get the referral. Ms. Flores-Lobo commented that they could ask parents to write a note requesting for their child to be evaluated. That would be the permission to evaluate, which should be the start of the timeline. A signed form would not be needed. * Ms. Eclavea asked Ms. Ritter to review the training of nurses for last quarter. Ms. Ritter stated she trained 2 nurses from Sagua Managu, 2 nurses from GMHA and 11 screeners from Sagua Managu and GMHA received training by Ms. Kim Aeillo, the audiologist consultant for the National Center for Hearing Assessment and Management (NCHAM) in August, on the importance of newborn hearing screening and the different options after identification of hearing loss. * Ms. Eclavea added that training for screeners at Central Public Health is complete, but training for Northern and Southern Public Health is pending. She will reconnect with Ms. Denorcey at Northern Public Health to schedule these trainings. The hardware for the database is ready to be installed. * Ms Eclavea stated that the PowerPoint presentation at Grand Rounds conducted at GMHA by Ms. Aeillo, the NCHAM audiology consultant back in August, was a really good presentation. Members are invited to view a copy of the presentation. Additionally, Ms. Aeillo mentored the audiologists during this visit. Part of the reason for the visit was to determine which direction Guam EHDI should go in terms of getting quality audiological evaluations. Both audiologists are not comfortable dealing with infants, and one audiologist feels obligated to continue evaluating infants due to the lack of other options for families. Additionally, Ms. Eclavea stated that Guam EHDI is looking at obtaining services through audiologists in Hawaii, possibly contracting services on a consistent basis. * Ms. Mantanona shared an issue with a family regarding audiological services. A child was seen by Audiological Associates, then by the GPSS audiologist. The child was referred for medical intervention and returned for evaluation several times. The child was finally referred back to Audiological Associates Footer: Page 6 of 8 Page 7 for further testing. A confirmed need for a hearing aid or hearing loss could not be obtained from the audiologist, and GEIS felt there was something wrong with the child’s hearing. The parents were frustrated and took the child to the Philippines for an audiological evaluation, was diagnosed with a hearing loss and fitted with hearing aids. * Ms. Mantanona inquired about high-risk infants that pass the otoacoustic emissions (OAE) screener, are age-appropriate in all areas, are found ineligible for services, but later are found to have hearing loss. Ms. Eclavea responded that the Audioscreener that the Pediatric Evaluation and Developmental Services (PEDS) has is capable of performing a two-step screener that could help catch those babies with sensorineural hearing loss. Ms. Mantanona will connect with Ms. Ritter to get her staff member that screens infants trained to perform the two-step hearing screener. * Ms. Eclavea commented on the various trainings done by Ms. Aeillo during the one-week visit. Additionally, Ms. Eclavea discussed the public awareness materials that were disseminated in December, which have been translated into various languages. * Ms. Eclavea discussed new developed products in the near future, one of which is the quarterly brief on how Guam EHDI is doing, so that the community realizes the importance of newborn hearing screening, early detection and intervention. Guam EHDI is working on: radio advertisements on the importance of hearing screening follow up, posters for parents and the milestones of normal hearing development, updating the Directory of Services, and creating pamphlets on a family resource guide and frequently asked questions for professionals. Ms. Eclavea talked about upcoming activities. Mr. Joe Mendiola is currently off-island attending the EHDI annual parent conference. The Guam EHDI Parent to Parent Support Group will participate in the “Healthy Mothers, Healthy Babies and Daddies Too” event on October 13th. The Center for Disease Control site visit is scheduled for January 28-29, 2008. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. * Mr. Joseph (JJ) Mendiola reported that: 1. We are still awaiting a dummy file to be sent by Vince Quichocho at GMHA that would be converted into the Guam Child Link system. 2. Audiological Associates is linked with Guam Child Link system. They have inputted audiological evaluation information on two infants so far. 3. GEIS was recently linked to the database, and training on the Child Link system will be conducted sometime this month. Footer: Page 7 of 8 Page 8 4. The linkage with Public Health is still in progress. A port needs to be opened for the connection to occur. * Ms. Borja reported that the website is up, but there is a problem with the parent link if you want to leave a message. We will continue to work with Dimensions Systems to fix this problem. Additionally a link to the GEIS website, (www.guameis.com), has already been made. The meeting was adjourned at 1:15 p.m. Footer: Page 8 of 8