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CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) convenes the July, 2000 EARLY HEARING DETECTION AND INTERVENTION AD HOC GROUP TELECONFERENCE The verbatim transcript of the EHDI Ad Hoc Group Teleconference convened at 2:00 p.m. on Tuesday, July 11, 2000 Table of Contents I. Welcome and Announcements II Data Integration - State of the States III. Information and Training Opportunities from Nat EHDI TA system. IV. March of Dimes interest in newborn hearing screening V. JCIH Year 2000 Position Statement JUNE HOLSTRUM: Hello, everybody. I'm June Holstrum from the Centers for Disease Control and Prevention. Welcome to the July 2000 teleconference on Early Hearing Detection and Intervention, and thank you for joining us. Please remember to mute your microphone when you're not talking. Today's conference is being recorded and the transcript will be available on the EHDI website. Before we begin our scheduled program, are there any announcements or comments from any of our listeners? MARTY WOLFSON: Oregon's law just went into effect July 1st. Most of the hospitals required to provide screening say that they are up and running. Once all the hospitals that are mandated are screening, it should carry about 95 percent of Oregon's births. JUNE HOLSTRUM: How many hospitals now do you think are ready to go? MARTY WOLFSON: There are 39 hospitals that are mandated to screen. Probably 80 to 90 percent said they were already screening some by July 1st. There's another 3 that aren't mandated to screen that are screening, an additional 3 that aren't mandated to screen that are buying equipment. JUNE HOLSTRUM: That sounds like pretty good progress. MARTY WOLFSON: Yes. JUNE HOLSTRUM: Great, thank you. Any other comments or announcements? JACKIE CUNDALL: Yes. Tennessee would like to give an update. On the line, I have Jessica Trumble, who is my -- JESSICA TRUMBLE: Hi. I'm Jessica Trumble, and I'm the new newborn hearing screening coordinator. (Inaudible) to actually (inaudible) 62 percent of our newborn population is getting screening at birth at this time. That's about 40 of our 95 birthing facilities. JUNE HOLSTRUM: Thanks for the update. MARTY WOLFSON: Thanks, Jessica. I'll update those numbers. JESSICA TRUMBLE: Great, thank you. JUNE HOLSTRUM: From CDC, we thought we would let you know that the RFP applications have been received. We have received 21 for the Level I and 5 Level II's. The review process will be August 7th through 9th, and you should be hearing several weeks after that. Next, we have Evey Cherow to update us on the ASHA teleseminar. Evey? EVEY CHEROW: Hi, June. Thank you. I appreciate it. Actually, we have three programs coming up that are relevant to folks on line, I believe. On August 11th, we'll have a telephone seminar called "Practically Speaking." The Joint Committee Infant Hearing 2000 position statement, "Developing and Sustaining a Quality EHDI Program," (inaudible) Terese Finitzo, Allan Diefendorf, Judith Gravel, and myself, and that will be from 1:00 to 4:00 Eastern Time. And for information, people can call 1-800-498-2071, extension 4236. In addition, we'll be doing an on-line course on "OAE's from A to Z," and that will be a six-week program with five one-week modules and interactive with the faculty who include Brenda Lunsbury and Martin Robbinette from the Mayo Clinic and Brenda from Florida. We have a pediatric audiology workshop scheduled for February 9th through 11th in 2001, and that planning is underway and that will take place in St. Petersburg, Florida. So for more information, please feel free to call ASHA for the on-line course. I have a number in front of me. It's Virginia Trailer here at ASHA, 1-800-498-2071 and ask for Virginia Trailer. Thanks for the opportunity to announce those programs. JUNE HOLSTRUM: Thank you, Evey. It sounds like some interesting training coming up. Are there any questions for Evey before we go on? (NO RESPONSE) If not, we'll move on to Brandt Culpepper who is going to talk about some data integration and state of the states. BRANDT CULPEPPER: Hi, June and to everybody else. What I've been doing over about the last month is contacting a lot of different people who are involved in the data collection in the state. I've been collecting information from a lot of different sources and resources. I've been trying to come up with a summary of where are we right now. In terms of legislation, we now have 34 states that have passed some type of legislation in support of EHDI programs and universal newborn hearing screening, and the number of babies born in those states accounts for about 77 percent of the births in the United States at this time. There are seven states with legislation pending, which accompany -- that's about 17 percent of the births, and then there are four states in addition to those that are voluntarily screening without legislation that account for about four percent of the births. In regard to screening, we now have about 13 states that are screening over 90 percent of the babies that are born in the state, with the overall average percent being screened for each state being 58 percent of the babies that are born. That's a big step up from where we were just a few years ago, but that 58 percent accounts for about 44 percent of the babies that are born in the United States. It's about 1,700,000 babies that are being screened every year. One thing that has been in progress over the years, and I think it started with the (inaudible) group with Linda Rose, is trying to set up some type of national database where we could track not only just the screening but the diagnostics audiometric assessments that follows the babies who are referred and then linking on from that diagnostic assessment to the early intervention system and seeing what happens after that. So we don't just drop it with the screening and refer for follow-up. This group has evolved and has come up with seven different data points that we're asking each state to collect data on so that we could monitor the progress and look at true demographics of hearing loss and intervention with kids with hearing loss over the years. The first data point is the simple number of live births that are born in that state. The second data point is the number of babies screened, and then there are two subcategories. One is prior to discharge from a hospital and then 2(b) is number of babies screened after discharge but before one month of age. The third data point being collected is the number of infants who are referred for audiologic evaluation. Number four is the number of infants who receive that audiologic evaluation by three months of age. Number five is the number of children who are identified with permanent childhood hearing loss and then we're collecting information about nature, degree, and is it unilateral or bilateral, the subcategories of that. Number six is age of identification of hearing loss in months, children with permanent childhood hearing loss. Again, there are several subcategories of that. We would like to look at the median age, the average age, and then the range of ages of identification of hearing loss, so the minimum and maximum ages. Then the seventh and final data point is the number of children with permanent hearing loss who are receiving early intervention services by six months of age. In looking at all of those data points, what I've been trying to do is give a little better picture for understanding where are we past the screening point. I think the states have been focused on developing screening programs and developing the data systems to maintain the data from the hospital to the referral source, and we're starting to look at what happens beyond that. So in looking at the different states and in looking at what are people doing, where are they in the system, there are many, many, many different things that you could include when you're looking at that to try to figure out what is going on, what are people doing, and what is happening overall. To come up with the way to report just a lot of data that fluctuates over time and is kind of a work-in-progress, I basically just created a spreadsheet and have given each state a rating for each of those data points that we're collecting, and the rating that I've assigned is from zero, meaning they're not collecting any information on this or the information is not available to us, to having full access to information for all of the babies who are being screened and are followed through the system within each state. So the best you could get is a one. I collected in increments of .25, which will have an impact on the data that are reported. Let's say, you can have a zero, a quarter, a half, three-quarters, or a whole point for each state for each of those data points that are collected. Some of the things I looked at, as I've already mentioned briefly, is, is the state screening all live births? Is it a true universal program? Are they using a systematic tracking system? Is it computerized? Is it reported and organized on some level of state so that it's reported to a central location? Then in going through and looking at a number of those different points, deciding the rating. Before I give you all of the numbers, I do want to say the caveat that I wouldn't submit this for peer review publication because it is certainly a work-in-progress and there are a lot of different people to talk to and a lot of different aspects that you can look at. But, overall, looking at the ratings for the number of live births, every state could report that. So it received a 100, the rating of 100 for live births. It's something I think maternal health has been monitoring for a number of years. So that's readily available to the states. Looking at number two on the list, number of infants screened, for 2(a), the number of babies screened prior to discharge, the rating was 71. The overwhelming majority of the states can report with some degree of accuracy the number of babies who are being screened prior to discharge. When you're looking at the number of babies screened after discharge but before one month of age, that number drops a bit. Some states don't track that or don't have access to that information, what happens after the hospital screening. So the number dropped to 41 for the number of babies screened before one month of age. For number of infants referred for an audiologic evaluation, I came up with an overall rating of 43. So a little bit less than half of the states were able to report what happened to the babies who were referred within those programs who were actually screening universally. For number four, number of infants who are receiving audiologic evaluations at three months of age, the overall rating was 29. It dropped a bit from number being referred. Then the final three categories, the number of states (inaudible) with permanent hearing loss, the children identified with permanent hearing loss, the age of identification (inaudible) -- UNIDENTIFIED SPEAKER: There's something very noisy on the line. Please start back on number of permanent hearing losses. BRANDT CULPEPPER: Okay. The rate for the number of children identified with permanent hearing loss was 25. The number of age of identification of children with permanent hearing loss is 25. And the number of children with permanent hearing loss receiving intervention by six months is 26. So, overall, just the general impression, the further away we get from having that captive audience in the hospital, the more difficult it is to track and to follow up what's happening with the children re-entering the system. I had actually -- before I did the numbers, I had anticipated that we would start with very high numbers and we would see them drop fairly rapidly closer to maybe ten or one or somewhere around there for number seven, but I was kind of pleasantly surprised to see that a number of states are actually linking with the early intervention system. So some of the babies who may drop out of the system at an earlier points, one of the earlier numbers, are actually re-entering the system because their databases are being linked with the early identification -- or the early intervention services that are being offered. So, hopefully, this is just an overview, where are we in terms of looking at a national surveillance for these seven data points right now, and I look forward to seeing this improve over time as states get more and more into the tracking to follow-up. I'm open for questions. JUNE HOLSTRUM: Just a comment before the questions. If there are some of you that do not have the list with the definitions, you can either e-mail me or Brandt and we can send you a copy of the definitions and items. We are collecting some of the data here at CDC. In '97, we had a pilot of four states; and for '98, we have seven states that have submitted data. We would like to make it easier for all of you to submit data whether or not you have all the seven data points or whatever you do have of those points. So we'll be talking more about how can we make it easier for states to send in their data.
UNIDENTIFIED SPEAKER: June, you said how many states in 1998 submitted data? JUNE HOLSTRUM: Seven. UNIDENTIFIED SPEAKER: Seven, okay. RON CALDERONE: Brandt, you mentioned that you were reviewing legislation that was being put in, too, on the national level. Does that legislation, can you recall, call for integrative databases, or are they just categorical for hearing, or are they for screening, et cetera, et cetera? BRANDT CULPEPPER: The legislation figures that I gave reflect only those states who have passed some type of legislative efforts supportive of universal screening or early hearing detection and intervention. I did not go through and look at -- specifically, for this report, look at what is included in that legislation. There is a table on the NCHAM website that goes through and presents information about what is addressed. Some of the things that I can recall are, did they establish a task force, are their monies tied to a bill for screening. So some of that information may be found there. RON CALDERONE: Okay. Thank you. KARL WHITE: Ron, this is Karl White. When we did that analysis of the legislation, at that time, there were only 31 states, but none of the states that have requirements to submit data to the states require that data to be linked to other databases. So in terms of how the legislation is worded, it's always just focused on the newborn hearing screening, although there is a lot of interest, as you well know, in linking those databases, but it's happening outside the legislative mandate. RON CALDERONE: Thank you, Karl. That was my point. It would make it much easier if the legislators also recognized the need to integrate and link from the beginning. It would make our job easier from the resource standpoint and more understandable from the conceptual framework of needing to link. KARL WHITE: And that's an excellent point. JUNE HOLSTRUM: Any other questions? MARY APPLEGATE: I have a question. This is Mary Applegate from New York State. Do you have a sense, just qualitatively, of the various approaches that states are taking for collecting these data? BRANDT CULPEPPER: There is a degree of variability, but overall, I think states are recognizing that they do need some type of computerized system in place. Relying on the handwritten reports being sent to the states, although it's better than nothing, is not ideal. Unless you have some type of tickler to prompt you to check up on every baby, it's not happening as well. In terms of linking to other systems within the state, I was pleasantly surprised as to how much was happening with that. There are a number of states that are either -- that either have developed or are in the process of developing links to either the electronic birth certificate registry that's in the state or linking somehow to the other metabolic or newborn hearing screening programs and/or linking to the early intervention programs that are ongoing. IRENE FORSMAN: All states are getting money to link some of their data systems here and there. That's the I grants and they could include -- It specifies newborn screening, but it doesn't specify newborn hearing screening, but that certainly could be part of it. BRANDT CULPEPPER: That's probably why so many of them are doing that. I hope that answered your question. JUNE HOLSTRUM: All right. Let's move on to Karl, and he's going to talk about the information and training opportunities from the National EHDI Technical Assistance System. Karl? KARL WHITE: Thank you, June. I'd like to talk about several things related to information on our website. The address at the website is http://www.infanthearing.org/. Infant hearing is all one word, and there have been a number of additions to that website in the last (inaudible). The first one is that we now have a bulletin board related to early hearing detection and intervention. Those of you who have used bulletin boards before will be familiar with the format, but it's basically -- it's separated into different forums. So there's a forum related to hospital-based screening. There's a forum related to audiology. There's a forum related to early intervention, one to medical homes, one to financing, and one to family issues. And anybody can write in and post a question or give a response to that question. The whole idea of a bulletin board is that rather than trying to assemble all of the expertise in one place, to provide a mechanism so that (inaudible). In addition to our staff who monitors that bulletin board on a regular basis -- So the idea is that we want to bring in the expertise from people all over the country who are involved in EHDI programs to participate in that bulletin board. We do monitor it regularly. So there's -- Our goal is to make sure that everyone who posts a question gets a response within one day, at least from either our staff -- We also have a national network of audiologists who have been involved in doing EHDI programs over the last several years. There's one or two of those in each of the ten MCHB regions in the country, and those people are also monitoring it. We do require people to participate in the bulletin board to register, but you can remain anonymous if you choose to. The registration process is very simple. The reason for the registration is so that we can send e-mails back to people when their particular question is answered and also to make sure that the bulletin board is -- that the people participating are doing it in an appropriate way. We've had a wide range of questions posted in the last several weeks since it got up and running, things ranging from "I heard there's a new CPT code for ABR screening. Do you know what it is?" to "I'm looking for money to start a newborn hearing screening program. Do you have any suggestions on where I might be able to find money?" So we would encourage all of you to register for it. When you go to our website at www.infanthearing.org, there's a button that says "bulletin board," and if you need any help registering for it, you can call our technical support line and they'll walk you through it, which brings me to the second point. We are operating a technical support telephone line from 7:30 in the morning till 5:30 in the afternoon, Mountain Time. You can reach that by calling 435-797-3584, and that's staffed during those hours to respond to any questions related to setting up early hearing detection and intervention programs. UNIDENTIFIED SPEAKER: Can you repeat that number? KARL WHITE: 435-797-3584. You can also access it through our website and the number is posted on the website as well. I would like to mention several other of the recent additions to the website. One is that we have posted most of the grants that were submitted to MCHB for the universal newborn hearing screening initiative, the ones which were funded. Our rationale is that there is a lot of great ideas included in those grants, and people who have submitted them have been gracious enough to send us copies and we've posted them on the website so that other people who are setting up EHDI programs can benefit from the ideas that are contained in those grants. As soon as the grants for data integration are funded, we will do the same with those grants. We'll also be posting within the next couple of weeks a section on the web related to instrumentation related to EHDI programs. So, in other words, there have been a number of states who have done surveys of audiologists or surveys of hospitals or needs assessments of early intervention programs. We have collected now about fifteen different instruments that have been used in various states and we'll be posting those to give other people ideas so that not everyone has to start from scratch on developing those sorts of questionnaires and surveys. If any of you have developed those kinds of questionnaires and surveys, we would appreciate it if you would send them to us and we will include them on that listing. Next, we will also be initiating a site on the web page related to home pages for any state who would be interested in doing that. A couple of states have already developed home pages like the "Sounds for Texas," for example, but in reading through the HRSA grants, we noted that a number of other states were planning to develop home pages. We will offer, through our website, a place for people to have a home page related to their state EHDI program. There will be a template for how those are organized and states will be able to decide which parts they want to participate in. For example, there will be a contact person for the state coordinator of EHDI to whom someone could send questions. There will be a copy of the law and/or the regulations that govern the EHDI program, a section for any guidelines that have been developed for the states. For example, I know the state of Massachusetts developed some excellent guidelines for setting up programs and those will be posted. There will be a listing of the hospitals in the state who are doing screenings so that if parents have questions about, does my hospital do screening. There will be a section on family resources that are available in the state, a listing of diagnostic centers and audiologists who do pediatric diagnostic work, and a section on intervention programs and resources. In each of these cases, we would obtain the information from the people in the states, but we would provide the technical expertise and the space on the website to organize that and to post it. So if any of you are interested in participating in that, you can go to our website and just send an e-mail to our webmaster and let him know about your interest. Within the next two weeks, we will have some examples up there of states that have already agreed to participate. Then the last point I wanted to make was that the week of October 26th -- and we aren't sure yet if it's going to be Monday and Tuesday or Thursday and Friday of that week, but we will finalize that within the next week -- we will be offering in Salt Lake City a workshop that we're calling the "Trainer of Trainers Workshop." We've had a number of states contact us and express interest in sending just one or two people to a workshop in which they would receive materials and experiences that would enable them to come back to their states and then work directly with people in hospitals to set up EHDI programs. So we are collecting materials and resources from the various groups that we've worked with and we'll be putting that together in a "Trainer of Trainers Workshop" the week of the 26th of October. I will be getting out a memo in the next week to all of the state EHDI coordinators about exactly when that will be. So that's it, June. If there are questions, I'd be happy to respond. JUNE HOLSTRUM: Any questions for Karl? (NO RESPONSE) If not, we have with us with Ellen Fiore from the March of Dimes, and we thought you would like to hear about their interest in newborn hearing screening. So, Ellen? ELLEN FIORE: Thank you, June. The mission of the March of Dimes is to improve the health of babies by preventing birth defects and infant mortality. Our theme line is "Saving Babies Together." So the welfare of babies is our business. Therefore, the March of Dimes is interested in all of newborn screening and now, due to recent developments with the prospect of mandated universal newborn hearing screening, we're especially interested. The March of Dimes seeks to accomplish its mission through four programs: research, community service, education, and advocacy. In 1999, shortly after the February publication of the American Academy of Pediatrics Task Force policy statement recommending universal newborn hearing screening, the National Office of the March of Dimes started to receive phone calls from the public, from professionals, and from our own public affairs office. The question was, what does the March of Dimes think of universal newborn hearing screening, were we for it or against it, was the answer yes or no. The momentum was picking up in state legislatures and, ready or not, states were passing universal newborn hearing screening legislation. Our staff and public affairs volunteers needed an answer. Parents were concerned and our own bioethics committee members were also encouraging us to make a statement. How would we answer? With a new field advisory? March of Dimes has field advisories as one-page written policy statements. They reflect the position of the Foundation on an issue of public importance. Field advisories serve as a guide for Foundation staff and volunteers in the handling of and activities surrounding specific issues. The Foundation has a field advisory steering committee consisting of senior level managers, and this committee acts in an advisory role and counsels the Foundation President on issues being considered for field advisory. Actually, the March of Dimes already had a field advisory stating our position on genetic testing/newborn screening in general. But hearing screening is different. It's not based on a blood test such as a test for PKU and most other mandated newborn screening tests. The hearing test is just what it claims to be: a screening. It's not a diagnostic test and requires sometimes costly follow-up testing and treatment. Dr. Donald Madison, March of Dimes Medical Director, and the Chair of our field advisory steering committee requested a first draft for our new field advisory to answer some questions -- answer the questions surrounding mandating universal newborn hearing screening. Research is our first step in installment of the field advisory. So we considered published data; attended the Centers for Disease Control and Prevention video conference that considered universal newborn hearing screening at the public health initiative; we consulted outside experts; and we talked to the March of Dimes bioethics committee. Our research revealed that while the potential existed to prevent speech and language delay and impairment, as well as to prevent hearing loss, some problems existed in setting up the infrastructure to a successful public health program. Some of the obstacles that surfaced were a shortage of trained specialists and facilities, no guarantee of follow-up testing and care, out-of-pocket costs for parents, (inaudible) society costs for parents, (inaudible) testing results, mistaken security with false negative testing results, and cost of commercialism driving premature development of programs. What responsible position could March of Dimes take? We really wanted to help. March of Dimes wanted to see the highest quality programs put in place to benefit each child served and, most important, do no harm. When the first draft was completed, we sent it for outside review to individual experts, as well as to the CDC. The bioethics committee reviewed an edited draft and then our Board of Trustees approved the final version, which reads: under "Background," "For 50 years, experts have emphasized the need to check hearing loss early. Significant hearing loss is one of the most common developmental abnormalities present at birth. Undetected, the condition will impede speech, language, and cognitive development and will result in significant costs. It affects one to three per 1,000 newborns in the well-baby nursery and two to four per 100 in the intensive care unit. Many professionals feel that technology is now available to allow effective screening of hearing loss in newborns and infants. Therefore, in February 1999, the American Academy of Pediatrics Task Force on Newborn and Infant Hearing recommended universal newborn hearing screening. Their goal is to screen at least 95 percent of all newborns and to detect any problems before three months of age with appropriate intervention no later than six months of age. Early detection of severe hearing loss is a laudable goal, but some experts are concerned that the current level of technology is not good enough for universal newborn hearing screening. Others feel the benefits of universal newborn hearing screening may be outweighed by its risk, such as false positive test results leading to further testing and parental anxiety, not to mention intervention that may be unnecessary or even harmful. Moreover, many areas of the country do not have adequate facilities or professional personnel to conduct necessary high-quality follow-up and intervention. Because many cases of deafness have a delayed onset, routine screening could have a false sense of security for infants who pass the test and develop problems later. Some fear commercialism will drive premature development of programs before they are effective. The Centers for Disease Control and Prevention prefers the use of terminology "Early Hearing Detection and Intervention" which highlights the responsibility for follow-up care. One coalition of experts suggests a checklist for state universal newborn hearing screening programs. They suggest the state programs should contain the following elements to maintain optimal consistency and quality assurance. Universal newborn hearing screening programs should check a minimum of 85 percent of all children in the state; relevant disciplines should be involved at all levels; screening should be accomplished before hospital discharge; insurance should be mandated to cover testing, follow-up, and intervention; and confidentiality of patient information should be guaranteed. Under March of Dimes practice, it reads: "The March of Dimes is in favor of universal newborn hearing screening as a goal for every child in every state, but concern remains for the quality control, follow-up, and intervention which truly benefit the child and do no harm. Volunteers should be encouraged to work with their state legislators and health departments to set up a mechanism by which professional health experts can participate in guiding program development that adheres to the highest standards of care for newborn hearing screening and provides adequate follow-up for all children to prevent long-term impact of hearing loss." Under March of Dimes policy, it reads: "The March of Dimes supports population-based newborn screening programs because of the potential benefit to infants and children, but implementation of such plans should occur only where adequate provisions are made to assure oversight and quality and to provide necessary follow-up intervention. Even so, parents need to be alert throughout childhood for hearing loss," and the references appear below. A copy of the field advisory is available from the March of Dimes Resource Center and they may be contacted by phone at 888-MODIMES, and in numbers, that's 888-663-4637, or by e-mail at resourcecenter@modimes.org. They may also be visited at the March of Dimes website which is www.modimes.org. Then you click on the Resource Center page. The March of Dimes is deeply committed to our mission of improving the health of babies. We had to make an informed responsible position on universal newborn hearing screening and encourage our volunteers and staff to work in their communities and states to help develop the highest quality programs. Any questions? JUNE HOLSTRUM: Thank you, Ellen. We're glad that March of Dimes is supporting the cause. Any questions for Ellen? (NO RESPONSE) All right. Then let's go to Terese for an update on the JCIH 2000 Position Statement. Terese? TERESE FINITZO: Thank you, June. I am pleased to announce the publication and release of the Joint Committee on Infant Hearing -- JCIH Year 2000 Position Statement with both guidelines and principles for early hearing detection and intervention programs. Our statement, I believe, is consistent with the emphasis on quality also advocated by Ellen Fiore from the March of Dimes. The Statement is currently available on three member websites and will be in print publication later this year. The three websites are, in alphabetical order: http://www.aap.org/, http://www.asha.org/, and http://www.audiology.org/. JCIH 2000 takes us closer to fulfilling our collaborative mission of improved language and literacy for children who are deaf and hard-of-hearing. The Statement does this through strong emphasis on quality and accountability during each component of the EHDI process: hearing screening, evaluation, and intervention. We have highlighted accountability by identifying benchmarks where they are available. A benchmark is a target or goal and it is useful to have some data to support a benchmark. Where data to support benchmarks are unavailable, those of us managing EHDI programs have the responsibility to collect the needed data and information. JCIH organizations that endorse the 2000 Position Statement believe that the use of such benchmarks will allow us both to demonstrate our progress towards fulfilling our mission and to demonstrate the value for the health care dollars dedicated to EHDI. We have been very fortunate recently as monies have been dedicated to EHDI. We need to demonstrate value for the monies earmarked for EHDI. The JCIH Year 2000 Position Statement updates and replaces the 1994 Statement. We endorse early detection of hearing loss and intervention for infants through integrated interdisciplinary state and national systems, universal newborn hearing screening, evaluation, and family-centered intervention. Several documents were notable in the last two years in influencing the development of the Year 2000 Statement and its guidelines.
The six members organizations -- And they are, just to remind everybody, the American Academy of Audiology, the American Academy of Otolaryngology, Head and Neck Surgery, the American Academy of Pediatrics, the American Speech Language Hearing Association, the Council for the Education of the Deaf, and the Directors of Speech and Hearing Programs in State Health and Welfare Agencies. These six organizations continue a 30-year history of interdisciplinary professional and consumer consensus-building in order to support quality health and education services to infants at risk for or with hearing loss. As is our tradition, JCIH members welcome comments on all issues related to EHDI programs and to our Position Statement. The Year 2000 Position Statement had the benefit of widespread peer review by each of our organizations and our members. To all of our colleagues, many, who are listening today, we want to thank you for assisting in the efforts to produce this document. We urge program administrators, states, and federal agencies, and service providers to apply the principles and the guidelines contained in JCIH 2000 Position Statement. We urge research institutions to continue basic and applied research to enhance our knowledge. Please feel free to contact any of the JCIH members or any of our member organizations. If you have comments on the document, we welcome them. I would like to say that each JCIH position statement is evolutionary. Each statement moves us closer to our vision than the previous position statement. We hope that JCIH 2000 establishes a strong foundation of quality in our EHDI programs. Thanks, June. JUNE HOLSTRUM: Thank you, Terese. We had a little bit of noise. Could you repeat the websites where they can get the document. TERESE FINITZO: It's on three websites right now: http://www.aap.org/ -- That's the Academy of Pediatrics website; http://www.asha.org/ -- Obviously, the American Speech Language Hearing Association website; and the American Academy of Audiology website, which is http://www.audiology.org/. As I said, it will be in print in the coming months. JUNE HOLSTRUM: Thank you, Terese. Any questions for Terese? ELLEN FIORE: This is Ellen Fiore. I'd just like to say, Terese, this is a wonderful document and it certainly does address a lot of our concerns. TERESE FINITZO: Thank you all, and I will pass that comment to all our members. They worked very, very hard on this. JUNE HOLSTRUM: Any other questions or comments, either for Terese or for any of our listeners -- our speakers? PENNY HATCHER: This is Penny Hatcher from Minnesota. Ellen, could you please tell us again the title of that document, the March of Dimes position paper, or is that it? ELLEN FIORE: Yes. It's called a field advisory, and it's the one entitled "Newborn Hearing Screening." As I said, copies are available through our Resource Center. PENNY HATCHER: Thank you very much. ELLEN FIORE: Sure. JUNE HOLSTRUM: Any last comments before we close? KEN ROSENBERG: Yes, I have two questions. Ken Rosenberg in Oregon. The first -- Actually, one is just a comment. We have newly-instituted newborn hearing screening, not really universal, and because our legislators wanted more information about what was going on, we have instituted a module in PRAMS about newborn hearing screening that other people might be interested in PRAMS states. For those of you who don't know what PRAMS is, it's a survey of postpartum women when they're about three to five months postpartum that asks a series of questions, particularly about prenatal care, family planning, child health, infant injury protection. And because it's being asked typically when women are about four months postpartum, it is possible to ask questions about: Did you get your baby get screened? And if your baby got referred, did your baby get diagnostic testing? We are piloting a module. I'm not sure that it will give us great answers because there's some unclarity about what people understand as a screening test versus a diagnostic test. So we're playing with it. And if you have a use for that kind of data and you have a PRAMS project being run by your state health department, I would be glad to send people a copy of it. It theoretically also could be done just by telephoning a random sample of people who had births, even if you don't have a PRAMS survey. So that's one resource that's available. The other thing is a question. Is there any state that actually has a registry of all newborns and whether they got newborn hearing screening or not, and particularly -- That would be question A. Then, also, do people have more extensive information about referrals and results from diagnostic (inaudible)? JUNE HOLSTRUM: Do we have any states out there that can answer Ken's question? TERESE FINITZO: I guess the question I would have is, what are the seven states who responded to your survey? Maybe they have resources for you. JUNE HOLSTRUM: I don't have my list with me, but some of them are: Colorado, Louisiana, Utah, Rhode Island, Hawaii, Mississippi, Texas. KEN ROSENBERG: We think that those states already have, for some birth year cohort, all the births in the state and whether they got testing, whether they got screens for each baby. The reason I'm asking is we're now formulating proposals for our next legislature, and I have not been able to find what you're describing. GIL HERER: This is Gil Herer in Washington, D.C. I would refer you to the December issue of the Journal of the American Academy of Pediatrics. There's a superb article by one of the speakers here, Terese Finitzo, which retorts on a great deal from data from Texas that might give you the answers. If you call me off line, I will be happy to share with you about 20,000 births of a specific hospital and tell you how many babies are captured before discharge, how many were passed before discharge, and how many went to the one-month rescreening and how many of those passed, and how many went on to ADR and what the outcome of that was. KEN ROSENBERG: Maybe I wasn't clear. I'm trying to figure out if I can go to a legislator and say there is a registry in other states and -- GIL HERER: Oh, okay. KEN ROSENBERG: -- and, you know, how they're set up and -- GIL HERER: I thought you were looking for identification. Okay, alright. LIZ CONVEY: Hi. This is Liz Convey from New Jersey, and our newborn hearing screening is linked with the electronic birth certificates. So we have some of this information if you want to give us a call. KEN ROSENBERG: Yeah. What's your number? LIZ CONVEY: 609-984-1343. KEN ROSENBERG: Thank you. JUNE HOLSTRUM: Any other last comments? (NO RESPONSE) If not, that's our program for today. Our next meeting will be on September 5, 2000. Again, thank you for joining us and we'll talk to you then. Bye |