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 Tuesday, January 30, 2007 Hilton Guam Resort & Spa Members Present Guest Present: Dr. Manuel DeCastro Ms. Leeann Barcinas, SLP, Navy EDIS Mr. Joseph Mendiola (Joe) Mr. John Cruz Members Absent Mr. Richard Flores Belinda Gonzalvo Ms. Ann Marie Cruz Lenny Joseph Ms. Avelina Opena Glenda Leon Guerrero Ms. Bridgette Flores-Lobo Maria Victoria Guiao Ms. Joyce Flores David Zieber Ms. Lina Leon Guerrero Edmund Cruz Ms. Margarita Gay Dr. Robert Leon Guerrero Ms. Pat Mantanona Dr. Velma Sablan Ms. Polly Triolo for Dennis Triolo Josephine Santos Guam EHDI Staff Members Ms. Elaine Eclavea Ms. Vicky Ritter Ms. Lizzy Borja Ms. Kerina Oshiro Mr. Joseph J. Mendiola (JJ) Meeting Notes Meeting was called to order by Mr. Joe Mendiola, Co-Chairperson, at 11:00am. 1. Mr. Mendiola requested for members to review the minutes of the last advisory committee meeting on September 12, 2006. The minutes were approved with the following changes: list of members present, page 1, remove duplicate names of John Cruz, Ann Marie Cruz, Joyce Flores, and Manuel De Castro; item 1, page 1, change “meeting order” to “meeting to order”. 2. Mr. Mendiola for members and staff to introduce themselves. A new member from the U.S. Naval Hospital Guam, Ms. Leann Barcinas introduced herself. She is a Speech & Language Pathologist at the Early Developmental Intervention Services. 3. Mr. Mendiola turned the floor over to Ms. Eclavea who asked members to refer to their meeting packets for the Narrative Progress Report for Year 1 - April 2006 to March 2007. This report was submitted in November 2006 as requested by HRSA. Therefore, data shared for this report was only from April 2006 to November 2006. Guam’s issues or barriers shared in the report included: * The lack of a pediatric audiologist available to our families. * The lack of trained early interventionists to serve our infants and families. * There is a change in personnel. Mr. Bill Toves is no longer able to work with Guam EHDI as Facilitator due to his busy schedule at GMHA. Mrs. Vicky Ritter, Guam EHDI Screener, will assume his role and responsibilities. 4. Ms. Eclavea proceeded with the quarterly report (data and goals & objectives) for August to November 2006. * 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%. Sagua Managu screens all their babies except the infants transferred to GMHA. * GMHA babies that failed initial screening (FIS) are currently in the teens percentage-wise, with rates being slightly higher in November. Reports are being given to the head nurses every month or every other month for their input/suggestions and to share with their staff. Incentive programs continue to be implemented and modified. * The FIS percentage at Sagua Managu Birthing Center is high. Ms. Eclavea noted errors that needed correction on page 5 of the power point presentation handout. The FIS % for August should read 42%, not 57%, and the FIS% for October should read 28%, not 27%. Some reasons for the increased FIS rate could be due to new screeners and some issues with equipment. Ms. Ritter will do further training/modeling, examine other reasons for the high FIS rate, use incentive programs, and closely monitor progress in reducing FIS rates. * Ms. Lina Leon Guerrero inquired about having regular access to monthly reports. Ms. Eclavea responded that the reports could be e-mailed to Sagua Managu and GMHA head nurses by Mr. Joseph J. Mendiola (Jay) at the end of the following month. Ms. Leon Guerrero requested the FIS report be broken down by individual screeners to be most helpful, and asked if Sagua Managu could access these reports directly. Mr. Jay Mendiola responded that only individual records are accessible now from Sagua Managu, but he will ask Mr. Quansheng Song, the Guam EHDI data consultant, if access to these reports can be arranged. * Ms. Eclavea reported that the Rescreen Loss to Follow-Up graph shows improvement from last year. One major reason for continued loss to follow-up is due to the phone numbers provided being incorrect, in which case Guam EHDI sends reminder notices to them. Sagua Managu has good return rates because families return there for re-screens. Ms. Ritter mentioned that Southern Regional Health Center has asked for a list of names of infants that need re-screening so they could help reduce the loss to follow-up. Ms. Margarita Gay commented that there is a box for Public Health referrals at GMHA, and the list of infants that need re-screening could be placed there for dissemination to the Public Health clinics. There is no problem with privacy infringement because the list is generated for medical reasons. Eventually Public Health Clinics can access this list directly from the database. * 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. * Guam EHDI Goal Three-all infants with hearing loss will receive early intervention services before 6 months of age. * Looking at the table on Page 7, there were 7 babies born in 2006 that were referred to Guam Early Intervention Services and audiological evaluations. Two of the babies have not had their audiological evaluations done, two had their IFSP completed by 2 months of age, and four have not had an IFSP completed thus far. There are two families with delays from parents, with one family that now cannot be located. One family has a delay from Guam Early Intervention Services (GEIS). * Since infants that are in the Neonatal Intensive Care Unit (NICU) for 24 hours are automatically eligible for GEIS services, Ms. Flores-Lobo stated that GEIS could have an IFSP completed while the infant is still in the hospital. Ms. Mantanona, GEIS Coordinator, responded that although they could complete an interim IFSP for NICU infants, some families do not want anything else to deal with while their child is in NICU or in the hospital, and sometimes ask GEIS to wait until their baby is more stable to proceed with entertaining GEIS staff. The GEIS nurse at the hospital already talks to parents about GEIS services and its benefits. GEIS is trying to educate parents that GEIS’ role will not be to work directly with the infant at first, but rather to work with the family in education, support and transition that they might need in caring for the child. * The other cases of infants referred for audiological evaluations were reviewed. There was discussion on communicating various evaluations of a child with their providers, and who gets audiological reports. * We are seeing an average of one baby a month identified with hearing loss. * 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. * We want to reduce this from 82%. In August 2006, our loss to follow-up rate was 25%, but it has increased to 50% in November 2006. Incorrect demographic information continues to be a major factor in our loss to follow-up rates. * Dr. De Castro recommended Ms. Ritter re-instate hearing screening services during his monthly premie clinic at Central Public Health, and Ms. Eclavea agreed. Ms. Gay also requested a list of hi-risk infants that need to be rescreened for Central Public Health, to catch the families even when they come for appointments outside of the clinic. Ms. Ritter will provide this list to them via Public Health referral box at GMHA Nursery, for all three Public Health Clinics. * 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. Ann Marie Cruz spoke about the last parent meeting on January 18th, with Mr. Dan Sommerfleck, Director, Guam Legal Services, on Parent’s Rights. This was the topic chosen to be most important by the Guam EHDI Parent to Parent Support Group. Parents spoke of concerns regarding services provided to their children, and another meeting was conducted at Mr. Somerfleck’s office to continue discussion on these and more specific matters. Mr. Sommerfleck is very interested in hearing specific issues of concern from parents, and is willing to meet to continue these discussions. Ms. Cruz commented that these meetings were very informative and helpful for parents. * Ms. Cruz mentioned the technical assistance visit last November by Drs. Yoshinaga-Itano, Gabbard and Johnson. A correction needed to be made to the powerpoint slide that was noted by Ms. Cruz., to change (November) 2007 to 2006. Information about this visit will be presented later in the meeting. * Ms. Cruz also requested input or suggestions as to who could conduct a presentation to parents on the social-emotional development of children, another topic Guam EHDI parents were interested in. Members recommended Dr. Kirk Bellis, a psychiatrist, and Ms. Erica Acfalle, GEIS teacher, as possible presenters for this topic. * Ms. Eclavea discussed the 2-day technical assistance provided by Dr. Yoshinaga-Itano, Gabbard and Johnson. Dr. Christine Yoshinaga-Itano is renowned for her research in early hearing issues. Dr. Cheryl Johnson is an audiologist and is Director of the Utah Department of Education Deaf & Hard of Hearing Program, and Dr. Sandra Gabbard is an audiologist who works directly with children in a Utah hospital. The presentations made by these were: > Hearing screening training for GMHA and Sagua Managu hearing screeners > Deaf education issues for the GPSS Deaf Education Program and GEIS staff > Audiological updates and informal work group for audiologists > Colorado model for intervention of children with hearing loss to Guam EHDI Parent to Parent Support Group As a result of this technical assistance, their general consensus was that Guam EHDI’s challenge is in audiological services, continuing technical assistance in this area, and to have one contact person for families once a diagnosis of hearing loss is made, to explain, support and guide parents through the different processes and stressors that can occur. * Ms. Mantanona informed the group about some states looking at a portion of Part B funding being used for early intervention services as a way to provide support to families of children that are “borderline” but not eligible for special education services. Ms. Eclavea added that primarily the states are looking at providing positive behavior supports to the children and families because there is a big issue with behavior problems in these children. * Ms. Triolo inquired about the timeliness of purchase orders being approved to ensure consistent and timely audiological services. Ms. Eclavea responded that she will look into this matter. * Ms. Flores-Lobo inquired if a parent would be sent for training to be the contact person that would work extensively with the families of children diagnosed with hearing loss, similar to the program in Colorado. Ms. Eclavea responded that Mr. Joe Mendiola and Ms. Ann Marie Cruz have been sent to conferences relating to parents and networking, but Guam EHDI could look at expanding into this area. * Ms. Cruz inquired about how can the parents of children with hearing loss be made aware of the parent support group. The only way the parent support group knows of these families is when they come to the parent support group meetings. Ms. Flores added that even in her son’s school, she does not always know about other kids with hearing loss. Mr. Joe Mendiola added that the parent support group is working to really establish themselves first, then work towards being a part of the community and expand towards mentoring or other community needs. Ms. Mantanona mentioned that GEIS is setting up their web site. Ms. Eclavea added that the Guam EHDI website will have a link to GEIS and the Parent to Parent Support Group. * Goal Six- Complete EHDI Tracking & Surveillance System that will minimize loss to follow-up. * The Memorandum of Agreement has been signed with the Department of Public Health and Social Services and the Guam Memorial Hospital Authority. Sagua Managu signed their Memorandum of Agreement last year. Training for the nurses has been completed for Central Public Health and is being arranged for Northern and Southern Public Health. Sagua Managu has the computer for data entry installed. Training for data entry at the Sagua Managu at will begin in February. A procedural manual for data entry will be completed. The Memorandum of Agreement with GEIS is in progress, which is the first step to linking with the Guam ChildLink database. Including Naval Hospital in data sharing is in progress. Ms. Flores-Lobo responded that the current Commanding Officer, Captain Kellogg, is in favor of community involvement, and recommended contacting his secretary who schedules his appointments, to begin dialog about data sharing. * Highlights- Jay Mendiola reported that GMHA data will be converted when the information is uploaded into our system. The data will be reviewed and downloaded into the database. An implementation plan will be developed, and the target date for completion of linkages is May 2007 at which time Mr. Quansheng Song will be back on island to provide further technical assistance in our Guam ChildLink system. * Ms. Avelina Opena inquired about whether GMHA would be able to view the data transmitted, and whether GMHA would be able to view other birthing site information as well. Ms. Eclavea responded that GMHA is only transmitting data to the Guam ChildLink system, and GMHA or Sagua Managu can obtain data reports from Mr. Jay Mendiola. GEIS will be able to add and update information on infants referred to GEIS from Guam EHDI, so they will have more access to the database. Ms. Mantanona stated that GEIS is working on obtaining release of information. * Ms. Liz Borja reported on the current status of the Guam EHDI website that can now be accessed, but minor redesign of pages will still be worked on. New developed products for dissemination were distributed to members for feedback. Once all is received, the products will be sent to a printer for production and then disseminated to the community. The meeting was adjourned at 1:16 p.m.