SUMMARY OF ADVISORY COMMITTEE MEETING Virginia Early Hearing Detection and Intervention Program May 14, 2004 DRAFT The following persons attended the meeting: Fredia Helbert, Deana Buck, Barbara Allen, Walter Nance, Jeaninne Beden, Dana Yarbrough, Barry Strasnick, Claire Jacobson, Leslie Ellwood, Leslie HutchisonPrince, Sally Frazier, Jackie Busa, Susan Ward, Mary Ann Discenza, Chris Owens, Ruth Frierson, Darlene Donnelly, and Pat Dewey. Announcements Lissa Power-deFur, Virginia Department of Education (DOE) will be leaving her position in June. She has accepted a position with Longwood University as the Chair for the Department of Education, Special Education, Social Work and Communication Disorders. She has been a leader in training and education initiatives since the beginning of the Early Hearing Detection and Intervention (EHDI) Program. Henry C. Hecker, AuD, audiologist and member of the Advisory Committee, died on May 12, 2004. The Title V Block Grant application is out for public comment. The application can be viewed from the following Website: www.mchb.hrsa.gov. Comments should be received by June 11, 2004. Jackie Busa was featured on the agenda of the Congressional Hearing Health Caucus event in Washington, DC on May 5, 2004. She spoke about the success of universal newborn hearing screening, the need for support of early intervention, and the need to concentrate on follow-up. Leslie Hutchison Prince has been asked to prepare a white paper on children’s hearing aid needs. She is looking for information on children under 5 years of age. Information needed includes 1) number of children needing hearing aids, 2) number of children who are using hearing aids now, 3) number of children who need funding to purchase the aids, and 4) the sources of funding available. The paper is due by June 4. Dr. Strasnick stated, and members of the group agreed, that accurate information is not available. Report from VDH Ruth Frierson, Peg Suttenfield and Pat Dewey attended the National EHDI Conference in Washington, DC in late February. The program display and the parent posters were featured during the states’ exhibit. Several states asked for permission to replicate the poster and the display. Peg Suttenfield will give a report from the parent perspective at the next meeting. The progress report for the fourth and final year of the Maternal and Child Health Bureau (MCHB) grant was submitted on time. The program has been approved for funding; however, budgets were cut by five percent. The Virginia Department of Health (VDH) requested use of estimated unspent funds from year three and were approved for that as well. The request to MCHB for this fourth year includes, (1) funding for the hearing aid loaner bank, (2) a special project to collaborate with Virginia Department of Education and Part C to develop a plan for data linkages, including making changes to the data systems that would enable us to collect outcome data, (3) the training and education contract with The Partnership for People with Disabilities, including plans for lunch-time teleconferences (using curricula and materials developed by the American Academy of Pediatrics (AAP) through funding from MCHB) as well as repeating hospital training and collaborating with National Center for Hearing Assessment and Management to bring their training project to Virginia, (4) funding the Follow Up Coordinator (FC) and Surveillance and Evaluation Coordinator (SEC) positions, and (5) travel, including attendance at the National Conference next year in Atlanta. The total budget is $189,245 plus $50,000 estimated carryover.
Approval has been received to fill the SEC position. This position will be transitioned over to a permanent position and will cover all programs within the Pediatric Screening and Genetic Services unit. Pat Dewey stated that work has begun to request full-time status for the FC position. Management has communicated a strong commitment to accomplishing this. The 2003 data presented at the last meeting was tentative, based on January to June time period. Updates to this report include: screening rate is now at 97.2; the number of children reported to VDH (born in calendar year 2003) with hearing loss is 65. Jackie Busa reported that a new rating was just announced indicating that Virginia has one of the exemplary programs. A map from the World Council on Hearing Health, displaying the states and their ratings, was shown to the group. Training for hospital staff involved in newborn hearing screening and reporting began in January and ended in March. The presentations emphasized importance of correct information being given to the parent and primary medical care provider and the accurate collection of risk indicators. All curricula will be made available on the www.vehdis.info Web site, including Power Point presentations with notes. Debbie Pfeiffer has been the lead in scheduling training for early intervention providers and early educators. This training is from the SKI-HI (Sensory [Kids] Impaired Home Intervention) program and is set up for two, two 2-day sessions with “self study” in between. The SKI-HI Institute developed the first model program to offer support and resources in natural environments for families with infants, toddlers, and preschoolers, age birth to five, who are deaf and hard of hearing. Attendees will receive all program manuals and materials, valued at several hundred dollars The video version of the Parent Resource Guide is finally completed. Copies will be distributed to all approved diagnostic audiological facilities; the library at Virginia Department for the Deaf and Hard of Hearing also will house copies. DOE will produce and distribute copies to all school divisions for dissemination to families. (The video was shown during lunch.) Program staffs are working on a project that involves developing a “genetic tool kit” in pocket card format. This kit would contain reminders/triggers for the primary medical care provider (PCP) regarding risk indicators for hearing loss and genetic issues. Chris Owens, Virginia Department of Medical Assistance Services (DMAS), reported that provider training is being conducted for Tidewater and Northern Virginia and is scheduled for Roanoke and Abington. Information about the Virginia EHDI Program is being included. A new Medicaid memo regarding policy on purchase of hearing aids will be out soon. DMAS has tried to remove as many administrative burdens as possible, including 1) eliminating requirement to attach certain paperwork to the claim forms, 2) increasing electronic submission, and 3) streamlining process for approval for higher end hearing aids. Providers are encouraged to bill at “usual and customary rates”, rather than the maximum rate the state will cover. Virginia pays twice what other states pay for services. Only a small number of providers are participating at this time.
Update from Follow Up Coordinator Ruth Frierson reported that: EHDI Program contact information is being highlighted in the physician and parent letters. A diligent effort is being made to determine the number and percentage of children who cannot be tracked because they have moved, died, etc., to more accurately show the rate of follow up. A stronger connection with audiologists is being established using letters and phone calls. A new hearing report form was developed and disseminated for comment; the final version will be sent out soon. The new parent support group will meet on June 11, 2004. Twenty-five parents were identified as candidates; fifteen have committed to help with this project. The goal is have parents who represent all areas of the Commonwealth in the support group; this would provide easier and more timely access to help for “new” parents.
Based on input from audiologists, a copy of the report form will soon be enclosed with the parent letters so that it can be taken to the audiology appointment. Stronger collaboration with early intervention local councils will assist with tracking outcomes. Plans for the coming year include developing a quarterly status report that could be sent to all approved diagnostic audiology sites. The report would include the number of follow-up forms/reports submitted to VDH and request verification that all babies seen had been reported. The audiologists for the Wellmont system will begin to send VDH a copy of the follow-up report that is sent to the Tennessee EHDI program for those Virginia resident babies who are born at Bristol Regional Medical Center. It is reported that at least 50% of babies born at that hospital are Virginia residents.
Report on Surveys Conducted by the Virginia Chapter, AAP Dr. Leslie Ellwood reported that surveys were sent to 260 families and 60 audiologists in April asking for information about the purchase of hearing aids. Results will be reported to the Secretary of Health and Human Services in June. Results discussed were preliminary, as all responses had not been tallied. Points made were 23% of parents responded. Responding audiologists reported that there is no hearing aid insurance coverage; in some cases responding parents reported that there have been insurance payments. Part C was reported as providing some assistance for hearing aids; budget cuts that may affect this in the future. Responses seem to indicate that the majority of parents knew about their child’s hearing loss by four months of age and that the child was enrolled in early intervention services by six months of age. Discussion Dr. Barry Strasnick led the group in a discussion of five issues. The focus was on improving the quality of information and timeliness of reporting. 1. Hospital reporting. Assure that there is uniformity of hospital reporting and that hospitals are entering data in a timely fashion. A report can be generated from the VISITS database to show this information. Design a survey for hospitals to determine uniformity of hospital programs. Ask questions such as o How much does it cost to screen babies? o Who trains the screeners? o What is the average reimbursement? o Do you bring babies back for outpatient rescreening? Hospital training needs to be repeated to assure statewide coverage.
2. Improve reporting of audiological follow-up Number of children reported with hearing loss in Virginia differs from national data. Are infants who have hearing loss passing the newborn hearing screening? There is a concern about both false positive and false negative results. Receiving reports on all children who are found to have hearing loss, regardless of results of newborn hearing screening, will help answer these questions. Challenges with the confirmation of unilateral hearing loss still exist. Allow audiologists to report via the Web. VDH should continue to pursue allowing reporting via the VISIST database .
Make sure that all audiologists know and understand the assessment protocols and the reporting requirements. Suggest collaborating with the Licensure Board to link reporting to licensure requirements. Chris Owens suggested possibility of linking reports to electronic claims.
3. Tracking of children with confirmed hearing loss through early intervention Protocols should stress that all children with hearing loss be referred to Part C Early Intervention services. An evaluation would determine the need for services. The audiologist should not make the decision to refer based on severity of the loss or absence of bilateral loss. Concerns were expressed about the length of time between referral and evaluation in the early intervention process. Regulations allow for a 45-day timeline.
4. Assuring that children receive appropriate medical evaluation Dr. Nance stated that referrals to state genetic centers for children with hearing loss are up 10%. At the VCU Genetic Center, most referrals are made by an otolaryngologist. The EHDI Program could coordinate with the state genetic centers to document the number of children who have hearing loss and who are referred for genetic evaluation. The AAP developed a checklist for pediatric primary medical care providers designed to assist with tracking screening and follow-up testing. The form is available on the Web at www.medicalhomeinfo.org/screening/hearing
5. Long-term follow-up data The group recommended that the EHDI Program collaborate with Part C Early Intervention to identify children with hearing loss who are receiving services but who were not reported to VDH. This would include children with congenital as well as acquired hearing loss. Dr. Strasnick and others suggested that the Follow Up Coordinator look into the long-term trends for children with hearing loss who were reported to the program during the first year, 1998-1999.
Next Meeting: The next meeting will be held in September 2004; date and location to be determined via email communication with members.