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CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) convenes the March, 1999 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, March 3, 1999 Table of Contents Welcome and Announcements
Detection and Intervention
Joint Committee on Infant Hearing Update
JUNE HOLSTRUM: Good afternoon, everybody. I'm June Holstrum from the Centers for Disease Control and Prevention. Welcome to the March teleconference on Early Hearing Detection and Intervention, and I 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 Internet. Before we get to any of our scheduled program, are there any questions, announcements, or comments from our audience? MARTHA CARMEN: June, this is Martha from Mr. Walsh's office. I spoke at the last two conferences about the Walsh bill. Several people had made inquiries to the language and when it would be available. It is now available. People can contact me at 202/225-3701 or by e-mail at martha.carmen@mail.house.gov. That's it. Thanks, June. JUNE HOLSTRUM: Thank you, Martha. Anybody have any questions for Martha? Next, Mike Adams is here to update you on the Envision program that we're having on March 5th. Go ahead, Mike. MIKE ADAMS: Yes, hello. There will be a seminar this Friday, March 5th, that can be listened to by telephone. It will be broadcast from 2:00 to 3:30 Eastern Time, and Dr. Nigel Paneth will present on the epidemiology of newborn hearing screening. Dr. Paneth, as many of you know, is a pediatrician and epidemiologist at Michigan State University and was a key consultant to the American Academy of Pediatrics EHDI policy that will be discussed a little later in our call today. Dr. Paneth is also on the expert panel that advises the National Institute on Deafness and other Communicative Disorders in the area of EHDI. The seminar was initially planned as a videoconference between Dr. Paneth at Michigan State School of Public Health, CDC, HRSA, NIH, and the Office of Special Education. Then we added a couple of more schools of public health, one at Columbia, New York City, and the other at University of North Carolina. It was only then that we realized that we could make the seminar available by telephone conference as well. The presentation will be targeted to those with a graduate level of training in epidemiology. In addition, Dr. Paneth will speak from overheads and, of course, cannot be seen by telephone participants and questions will be limited to those at the videoconference sites. So that given all these restrictions, it has been pointed out that for those of you on the phone who, in usual circumstances, communicate without any disability, this imperfect accommodation of the telephone link will provide a simulation of the barriers that are regularly encountered by the deaf and hard-of-hearing. The phone number to link into the Friday seminar is 800/713-1971, and the conference title is EPI, and the conference code is 351926. So that's going to be Friday, March 5th, from 2:00 to 3:30 Eastern Time, and the phone is 800/713-1971. The conference title is EPI and the conference code is 351926. Are there any questions? SUSAN NORTON: Hello. This is Susan Norton.Can Dr. Paneth make his overheads available in a PowerPoint presentation that you guys could e-mail to everyone? MIKE ADAMS: I think he's considering it. So he is going to be trying to make his overheads available on his web site. That's not a promise, but if that were to be -- if that were to happen, we could let everybody know on the EHDI e-mail. JUNE HOLSTRUM: To lead off our program this month, we have Lisa Holden-Pitt from Gallaudet University in Washington to give us a report on the survey of deaf and hard-of-hearing children and youth. Lisa, go ahead. LISA HOLDEN-PITT: Before starting, I just want to say that it's only been less than three years that I've been working with this survey. Previously, I was doing speech perception research. So, much of the background of the survey is known to me only secondhand, but I'd be happy to answer questions afterwards. Before sharing some of the highlights of the survey itself, I want to start by taking a few minutes just to provide a description and brief background of the Annual Survey. It's now in its thirty-first consecutive year conducted by the Gallaudet Research Institute (formerly the Office of Demographic Studies) here on the campus of Gallaudet University. This survey represents the largest ongoing database of information on deaf and hard-of-hearing school-age children across the U.S. It originated in response to a need for accurate and continuing demographic data on deaf and hard-of-hearing children in order to facilitate educational policy and program-planning for deaf students. However, recently, there's been much interest in the survey findings by scientists and legislators, the media, professionals, clinicians, and so forth. The survey itself consists of a single page of items soliciting demographic, communication-related, and other educationally-relevant information to help characterize these children. In addition to the basic demographics, the survey collects audiological profile information, etiologies, home communication background, and type of instructional programs that the children are attending. We have recently added a section for reporting general functional assessment, including specific additional disabling conditions. Now, that last section is new as of 1998, and we have not yet gotten to evaluate it carefully. So I won't be reporting on that today. The survey data is largely reported through educational institutions, with the survey responses typically provided by school teachers, clinicians, and school administrators. The Annual Survey is neither a census nor a carefully selected sample. So we're not able to make estimates from this database. Educational program participation in this survey is purely voluntary. We don't have the staff or the financial resources to locate all educational programs that serve deaf and hard-of-hearing children across the U.S. We do think that we are covering approximately sixty percent of all deaf and hard-of-hearing children receiving special educational services in the U.S. That estimate is based on the U.S. child-count figures. The database currently represents about fifty thousand deaf and hard-of-hearing children being educated in over nine thousand public or private schools. These schools could be large or small schools. They are largely regular education facilities mostly service hearing students. The children that attend the regular education or mainstream institutions comprise more than two-thirds of our current Annual Survey database. However, the actual population representation is better for the children attending special schools for the deaf, that is the residential institutions, the traditional deaf education institutions. What I mean is that we have a greater participation rate from the traditional deaf-educational institutions. As we're moving towards increasing numbers of deaf and hard-of-hearing children in the mainstream, it becomes more difficult for us to locate the pockets of one or two children in schools here and there throughout the country. We just don't have the resources for that kind of identification. However, given the wide use of the survey summaries, we do make every effort to provide an accurate reflection of reality. So we're constantly seeking new sources of data. In fact, I think it would be great if the survey could, at some future time, tie into an established system for identifying deaf and hard-of-hearing children prior to their entry into school. Perhaps the growth of the universal newborn screening effort will be able to provide that kind of link someday. Statistics and reports generated through the survey are well utilized for assessment and research purposes, as well as legal accountability and planning. Periodically, the survey has been sampled for developing deaf student norms for academic achievement tests like the Stanford-9. The continuing nature of the survey has permitted the detection of noteworthy population and educational trends among those populations. Attention to such changes is important, of course, for program planning. That kind of tracking was used as we, years ago, tracked the maternal rubella bulge, as it was called then, and we're currently using the Annual Survey as a springboard for examining factors that are associated with various intervention approaches such as cochlear implants, and the use of ASL as an instructional communication method. So over time we're able to look at various factors across years of the survey. Now I'm going to move quickly to present some of the results from the survey. For the most part, these are univariate percentages from the survey. Certainly, some of the more interesting effects are apparent once you start cross- tabulating some of the survey variables, but for simplicity right now, I'm just going to present some general highlights. The survey's representation for gender is fairly even with a slight edge to males. We've had, across probably the last twenty years, fifty-four percent males and forty-six percent females. They range in ethnicity. The representation in the survey mirrors the general U.S. population. So while our representation of Caucasians in the survey group has been steadily declining, we have seen almost a doubling of the Hispanics and Latinos who are represented in the survey. For age at onset of deafness, it is reported that about two-thirds of the children were deaf from birth -- I mean, they were identified as being deaf at birth -- and an additional twelve percent were identified as deaf or hard of hearing at or under under one year of age. For the reported causes or etiologies of deafness, about forty-five percent of the children that are reported to us have unknown etiologies, with the remaining half or so largely a split between the genetics/hereditary etiologies, those that are what we consider post- birth causes (e.g., otitis media, meningitis, trauma to the head) and the third being those related to pregnancy and birth. The audiometric classifications of the database indicate that about a third of these children are identified as profoundly deaf, with another third categorized as moderate or less hearing impairment, and the final third in between those extremes. About four percent of the children in the survey have received a cochlear implant. If we limit the number we're looking at to those who are identified as profoundly deaf, that is, those who would, in fact, be audiometric candidates for a cochlear implant, that figure jumps to eight percent. And our records indicate that about eighty-four percent or so of these children are still using the implant at least in school. Hearing aids are used by about sixty percent of the children who are reported to the survey. With respect to instructional settings, we've got pretty much a good split between special schools (meaning they are residential or traditional deaf schools, special for serving deaf and hard-of-hearing children) covering about thirty percent of the children, those that are what we would consider fully mainstreamed or at least mainstreamed half the time, with about forty-three percent in that category, and an additional thirty-two percent identified as being in self-contained classrooms within a regular education setting. There is some overlap in those percentages because there are some students who attend more than one type of school program. With respect to the academic integration of these students, many are not integrated with the hearing students despite the fact that they are in a regular education setting as I just indicated. Our percentages show that thirty-nine percent of the children show no academic integration with hearing students in their school setting while twenty-eight percent show virtually full participation with the hearing students in the academic situations. Support services to these students are largely represented by the sign interpreter -- the sign-interpreting program. Thirty-seven percent of these students indicate that a sign interpreter is used in their classroom. I believe that does not cover situations where the teacher is deaf. So in a situation where the students are deaf and the teacher is deaf, most likely they're not reporting sign interpreting as a support service. I'm just telling you that so you won't confuse what I'm trying to report as far as the percentage of interpreters. There are certainly more students that are using sign language in the classroom. Also, ten percent of the students report that they use a note-taker. Sixty-nine percent indicate that speech training, some level of speech training, is used with the students in the academic setting, and the instructional communication method that is used with the students is fairly evenly split between those that receive instruction through all oral means and those who use total communication or what we refer to in the survey form as Asign and speech." We have added in the 1998 survey a new question that asks about the languages regularly used at home. This was partly in response to the increasing number of Hispanic students in the survey database and we find that, indeed, fifteen percent of the children reported are reporting that Spanish is regularly used in the home, and this is compared to eighty-four percent who report that English is regularly used at home. There certainly can be overlap, as well. Parent-hearing classification is pretty much what you've been reading over the years. About ninety-one percent of these children have two hearing parents. We have also added this year a question about deaf and hard-of- hearing siblings. This was mainly in response to a request we had gotten from a group that is working with us on some genetic studies using some of the students from the survey database, fourteen percent of the reported students have deaf or hard-of-hearing siblings. Finally, I have a report of another new item, what we call "functional hearing ability." This is, again, new this year and what we ask is how well does the student function with respect to hearing in the classroom. We are trying to impress upon the respondents to the survey that we mean how well do the students Ahear@-- not lip-reading use, but truly the use of their hearing, their functional hearing. That is, in some situations, hard to tease apart, but this first solicitation indicates that fifteen percent of the children are reported to function normally with respect to hearing; and sixteen percent at the other end of the spectrum are indicated as having no functional hearing. The other categories between those extremes are Amildly-limited functional hearing ability@, with thirty-five percent of the children falling into that category, and the other being Aseverely-limited hearing ability@ accounting for thirty-four percent of the group. We're still trying to evaluate these findings, and we also realize we need to Atune@ the instructions we're providing to the people who report that information to us. Now, I can't remember if I had indicated that while the data is reported through the schools, it is reported by a variety of sources and we don't have control over that in any given school or program. We don't know or don't have control over whether the teacher of that student is making the report, or whether the administrator or some support staff is completing the information on the form. However, we do know that teachers are the greatest respondents to the survey. So we feel comfortable that a very large part of the data is being reported by people who are close enough to the student to have this information. I also have gathered through conversations with people who are reporting data to us that many of the programs do have established databases that they're using, not only for this purpose, but certainly it serves this purpose as well. So to wrap up, we like to characterize the annual survey as broad but not deep, meaning that the breadth of the survey touches many aspects of the educational experience of deaf children, though because of page limitations and the fact that it's a voluntary effort on the part of the respondents, the survey can accommodate relatively few items on any one topic that's solicited. Consequently, we periodically conduct what we call supplemental surveys. In fact, we are preparing to launch a supplemental survey on pediatric cochlear implants shortly. Due to confidentiality constraints, data from individually-identified children or subgroups of children who are represented in our annual survey may not be reported or provided to anyone other than the source from which we receive the data. However, aggregated data may be requested and such requests are certainly honored to the extent that we can manage it with our available staff. We have collaborated with scientists from other universities at various times to utilize our annual survey database in the conduct of research on topics that are of mutual interest to us. For more information about the survey, I have an article that's in the April '98 issue of the American Annals of the Deaf, and that chronicles thirty years of the survey. I should also mention that twenty years of our Annual Survey case data, with the identifiers removed, of course, can be obtained from Sociometrics through its market of the RADIUS data set. We have a web site and I can give the web address if anyone is interested in that. That could connect you to information about our survey along with other information about things going on at the Gallaudet Research Institute. If you need or would like a copy of the survey form or the numerical summary report of the survey, you can either phone me or you can e-mail me and I'd be happy to get that out to you. So I'm just appreciative of the opportunity to familiarize you with the database and encourage you to share it with your colleagues and hope they'll be able to spread the word that way. Thank you. The web address is http://gri.gallaudet.edu. My phone number is 202/651-5712. My e-mail address is lisa.holden-pitt@gallaudet.edu. JUNE HOLSTRUM: Thank you, Lisa. Are there any other questions for Lisa? LINDA ROSE: Yes. This is Linda Rose from Louisiana. Lisa, I approached our Education Department several years ago about adding three questions to the survey and they were kind enough to do that in our state. I'm wondering if you all might consider at this point adding this information in nationwide because it is related to infant hearing screening. What we added was: the age of identification of hearing loss; the age of initial use of hearing aids; and the age at beginning early intervention. I have some of that -- you know, the wording of those questions used that I could send to you, but this, we thought, would kind of give us a comparison within the state so we could show the improvement with universal screening as we hope the age of identification is lowered and things like that. LISA HOLDEN-PITT: That is certainly something I can see the importance of. My only concern -- And I don't know if this was expressed to you -- was how much of that information the people who provide us that data would be aware of. I gather it would have to be something that is put on the intake system of the school programs that supply information to us. I know that Louisiana and Texas, as well, have individualized more tailor-made surveys where you can, through contract, add that kind of feature. Certainly, I'm very happy to bring it up once again as we prepare this summer for another round of the survey. We have made in the last year a lot of pages and we're getting a fair amount of feedback about so much change after a reasonably stable survey form for many years. We don't want to lose participation because of adding a lot of features, but, certainly, I'm very much interested and understand your point. So I will bring it forward again. LINDA ROSE: Thanks. JUNE HOLSTRUM: Any other questions for Lisa? [No responses] All right. As most of you are aware, the AAP Policy Statement on "Newborn and Infant Hearing Impairment: Detection and Intervention" was published in a February issue of Pediatrics. Today we have Liz Osterhus and Jim Lemons to summarize that policy statement. JIM LEMONS: I think everybody is probably familiar with this. It's actually called "Newborn and Infant Hearing Loss: Detection and Intervention" and it was published this past month in Pediatrics.I don't want to go through it in any detail because it's available to everyone. So most everybody is familiar with it. The essence of it is that we feel again that there are sufficient data now to adopt a formal position by the Academy to support and promote universal newborn hearing screening, and the attempt was in the statement to be as specific as possible regarding what the parameters were that defined a successful and an effective newborn hearing screening program so that there were real and realistic goals and numbers that could be applied to a program to evaluate its efficacy. Also, then we attempted to articulate what the critical steps were in proceeding through effective newborn hearing screening, including the tracking and follow-up and then the identification of appropriate intervention and evaluation of the programs, at the local, state, regional, and national level. We believe this is a national endeavor and that monitoring the individual programs, as well as the entire national initiative, through appropriate data collection using common definitions would be important. We thought that in individual states that this should become the primary responsibility of the state departments of health to put in place mechanisms and data-collection programs to provide feedback directly to the individual programs regarding how they were performing, as well as sharing that information at a national level to monitor effectiveness. We realize that in many parts of the country the resources are not currently available, in terms of dollars, equipment, and personnel, to meet all of the recommendations, but that given that we start with the screening first so that we can at least identify those who have or are at high risk for having significant bilateral hearing loss, that this will then be the first step before some of the other steps are taken. We realize that there is a limited in supply of expertise available both to document or, perhaps, confirm hearing loss, as well as then to provide the appropriate recommendations for intervention in all locales and that more people will need to be trained and dispersed throughout the country to ensure that all children receive the recommended interventions at the appropriate time. Anyway, I think everybody felt very good. At this point, the task force which drafted this document is actively working on attempting to develop or collate and make available educational information to the people involved in hearing screening, particularly to pediatricians and medical directors of these programs throughout the country. So we're trying to gather the best resources that are available and then determine how to make those accessible to people interested and involved in establishing newborn hearing screening programs. We have a variety of organizations that are participating actively in that process, and Liz is our staff person who is helping to coordinate that at this point. ELIZABETH OSTERHUS: This is Liz Osterhus. I would just add that from the Academy's perspective, we're also trying to emphasize how the screening initiative should be coordinated with the child's medical home, and any educational materials we develop would be something that would be emphasized in terms of ensuring that any results would be reported directly to the child's primary-care pediatrician or primary-care physician and then that physician would then follow up as appropriate. Then just the other thing I would mention is that we are trying to work closely with the Joint Committee on Infant Hearing in developing any educational materials in terms of working collaboratively. The Academy does have two delegates to the JCIH. Our hearing screening statement was developed by our own Academy task force but with the involvement of these JCIH delegates. That's all I'd add. JIM LEMONS: And, in addition, I think we are actively working at the national level on the legislation, the Walsh Bill. The Academy of Pediatrics, in particular, are working hard on that. We are also trying to work hard in supporting state legislation, both by developing some model legislation and making resources available to people who are involved in their own state initiatives. ELIZABETH OSTERHUS: If anyone wants to sort of keep apprised of what the Academy is doing on hearing screening in general, statements, or anything else we're doing, you can visit our web site. The Academy's web site is www.aap.org. Then once you're on that site, one of the first things that comes up right now is the hearing and screening statement. By clicking onto that, you can get to our screening page. JUNE HOLSTRUM: Thank you Liz and Jim. Does anyone have any questions? PATRICK BROOKHOUSER: This is Pat Brookhouser. I have a comment. I think the AAP is really doing a very important service here. I think getting the state-level chapters of the AAP behind the state bills will have a tremendous positive forward push. If we can team them up with educators so that the education lobby and the medical lobby can work together at the state level, it should be a very valuable contribution. JUNE HOLSTRUM: Next, we have an update from the Colorado MCHB Grant. I'm not sure who's talking from there, but go ahead. KATHY AREHART: This is Kathy Arehart, and I just want to give a brief introduction to say that we continue our work with nineteen states. Currently, we are carrying out a second needs assessment based on screening, assessment and intervention. Since November, we have been having teleconferences with each of the individual nineteen states to document changes, needs and priorities in system development. Vickie Thompson, Sandy Gabbard, and Arlene Stedler-Brown, who are our coordinators, respectively, in screening, assessment, and intervention are now going to give updates in each of these three areas. VICKIE THOMSON: This is Vickie Thomson. I just wanted to mention that a number of our states are proceeding this year with legislation, not that that's something that the Marion Downs promotes, but about six of our states have legislation pending. So best wishes to them. We also, compared to the first round of surveys, have seen a huge increase in screenings, from seventeen percent of the total birth population to thirty percent in just one year and suspect that that's very conservative. I have asked our states to e-mail me their most recent updates and all those have increased by twenty to thirty percent. So I suspect that thirty percent is extremely conservative and we're probably screening closer to forty to fifty percent of the 1.1 million births from the nineteen states. That's good news, that screening is almost doubling as we speak. Of course, the challenge, as Dr. Lemons pointed out, is still assuring that there's appropriate follow-up screening to diagnosis, and states are realizing a need for computer-based systems. They are looking at the commercially-available data management systems, but they're also being creative in looking at systems that are currently available through their local health departments to hospitals such as the genetic newborn screen or the electronic birth certificates. So we'll keep you posted on the success of those as they develop.Although we realize the need for computer-based screening, we're all challenged with outside factors such as families changing names, families moving, families not understanding the follow-up recommendations, and physicians still not agreeing to newborn hearing screening so that we get poor compliance. So those are all still some of the factors that we're dealing with at the local level, the state level, and the national level.Sandy, I'll forward this on to you. SANDY GABBARD: Okay. This is Sandy Gabbard. I just had a couple of comments about the issues facing us in the diagnosis and amplification arena.I think as we're touching base with our states in the last couple of months, the biggest issues seem to be the availability of quality diagnostic services and how to adequately ensure that audiologists either receive training or know when to refer these kids. Many states are working on state practice guidelines in the area of audiologic assessments. We're going to be meeting at the American Academy of Audiology Convention at the beginning of May to help maybe coordinate some of the state efforts. At this point, it is state to state, although a handful of states do have guidelines now and several other states are putting together their own guidelines. So that's, I think, a good move and it is optimistic then that there will be some [inaudible] services. The second issue, which directly relates to these practice guidelines, is the issue of training and providing opportunities for audiologists, particularly in areas who will serve more rural or fewer numbers of kids, that would provide training for them to come up to speed with these guidelines, and we are working with our states to try and ensure that training opportunities will become available for those audiologists, hopefully in their regional areas. The third issue that is at issue for some states has to do with funding of hearing aids and particularly funding of more advanced technology hearing aids. In the past, much of the funding for kids has come from Medicaid or some kind of third-party payors and many of them are not paying for the more expensive hearing aids. Most of us believe that there are some advanced hearing aids that may be beneficial to young children who have not been able to access them in the past. So we hope to be able to pull together some resources and at least establish some issues for states to help them move forward with getting funding for those hearing aids. I think at that point I will turn it over to Arlene Stedler-Brown who is our Intervention Coordinator. ARLENE STEDLER-BROWN: Thanks, Sandy. We surveyed the nineteen states' intervention programs, and what I want to point out here are six issues that really are striking, I think, as we look at the early- intervention programs. Those are: where the referrals are coming from as kids enter into intervention; the types of communities served by the programs; the number enrolled in the programs; funding for early intervention; pre-service training programs and intervention; and the population of children with hearing loss. In terms of where the referrals come from when children who enter early intervention, some states have a very defined system that operates statewide and if this system exists, it tends to be through the Part C network of IDEA. Many states still have the responsibility for referrals coming from a variety of sources because they've been referring to kids for years and years, physicians, nurses, the parents themselves, and a variety of other professionals. I think the important thing we need to look at is we need to have a specific system so that we can track the children as they move from the diagnostic process into the early intervention system. The second point in terms of the communities that are served by early-intervention programs, the choices were on a state program, on reporting as a county program, or programs that just provide services to children in a smaller area, just as a city in which the program resides. Some states have a very well-established program that's statewide and, typically, these programs have been through the schools for the deaf which have been around for a very long time. If this is the case, these programs are looking at how they will respond to the changing population with the advent of newborn hearing screening. The majority of the programs in the nineteen states serve children in county-wide areas, and this is usually the case when the Part C system is responsible for assuring intervention. It's the private programs, the not-for-profit programs, that are usually covering a much smaller area. The third point, the number of children enrolled in intervention programs, there seems to be some trends because of newborn hearing screening. What we're seeing first, of course, is that the children are getting younger. The second effect of universal screening is that more children are being identified, and this effect has not been seen by all states just yet. I think that it's important that we see and anticipate that this is going to challenge the capacity of the existing programs that serve children because many of the programs contract with their early- intervention providers and they're often not FTE's. At this point, the majority of children as reported by the states that are in early intervention are in the twenty-five to thirty-six month age range. The next largest group, the children are from thirteen to twenty-four months. The smallest group is children from seven to twelve months of age. Of course, we're trying to get children into early intervention by six months of age because of the research that supports that effort and the statement from the American Academy of Pediatrics. There are some programs, Skyhigh, for instance, in Utah, that have written grants to help us look at training issues for the interventionists who are asking for training in serving this very young child and their families. The interventionists themselves are saying this is a different sort of intervention and we want to have some in-service training. Funding sources is the fourth point. A variety of funding sources for early intervention exists: Part C, Medicaid, Title V programs through health departments, state schools for the deaf, private insurance, and some families are paying for the intervention out-of-pocket. Most states act as a variety of these funding sources. Some states are fully funded by their schools for the deaf, and the Part C system has certainly had an impact in some states, especially when that state has funds [inaudible]. We looked briefly at the pre-service training programs, training the interventionists. There is absolutely no consensus among our nineteen states in this arena. Pre-service training may come from programs for the deaf and hard of hearing, from speech-language pathology, sometimes from audiology, oftentimes from early childhood special education programs. I want to share a personal perspective which is I think it's the characteristics of the interventionists as opposed to their pre-service training that are the important things to consider when you determine if the interventionist is appropriately trained, and I would suggest looking at these areas for training: the interventionists have developmental information on the very young child versus the three-year-old; that the interventionists know about amplification; that the interventionists have expertise working with different communication methods (auditory-verbal, auditory-oral, TC, total communication, American Sign Language, et cetera) and that the interventionist is well- versed in parent-centered practices. The last point I want to make from our survey is looking at the population, the characteristics of the hearing loss of the population, we have this divided into mild, moderate, moderate-severe, profound, unilateral, and auditory neuropathy. And looking at those last two categories is maybe of the most interest because we have never been -- statistically have not served children with unilateral hearing loss under the age of three. So there's a lot of discussion about the appropriate intervention or if there should be intervention for this group, and children with auditory neuropathy are an absolutely fascinating group of children. There's no consensus on building an early- intervention program for these kids, but many in-service training programs are starting to look at how we should serve these children. Well, that's it from the Marion Downs Center. Any questions for any of the staff that has presented here? [No responses] JUNE HOLSTRUM: If there's no questions, thank you very much, Colorado group, for that update. Next, we have Dr. Patrick Brookhouser to provide us an update on the Joint Committee on Infant Hearing. Pat? PATRICK BROOKHOUSER: Thank you. The Joint Committee on Infant Hearing is having a meeting beginning tomorrow. We have twice-yearly meetings and this one will be held in conjunction with the American Auditory Society down at Scottsdale. We're working feverishly on a 2000 position statement. As I mentioned to some of the other friends in Chicago at an AAP-sponsored meeting the other day, we're sort of in a position of a group that has begun to achieve its longstanding goal of universal newborn hearing screening. Not absolutely, but our main goal of trying to encourage universal screening has been responded to beyond our wildest dreams. Now what the role of this committee, which is a disciplinary committee, I think is going to be is to help provide information necessary to assure quality services throughout the whole system, to identify best practices, and to work with various component groups that are going to be involved in making sure that our early identification efforts live up to our expectations. We recently collaborated, present and past members of the Joint Committee, on authoring the February 1999 issue of the Pediatric Clinics of North America, providing a lot of information to the general pediatrician about the issues surrounding newborn hearing screening and the care of a newly-identified, very young child with hearing loss. It has become very evident at our meeting that the AAP sponsored the other day, there is a great knowledge gap amongst those of us out in the field who are practicing because very few of us have had a lot of opportunities to see and to care for a child below the age of nine months or even a year who have documented hearing loss and significant hearing loss in many cases. Now, anecdotal stories were being told by - about family physicians or pediatricians in general practice - who are being sent evidence or sent information regarding a child having failed hearing screening, only to say, "Well, he looks like he can hear. I don't think I need to do any more evaluation." Now, that's not their fault. That's our fault for not having provided them with information about what a significantly hearing-impaired or even a moderately hearing-impaired infant below the age of six months looks like. That's going to be a big information gap that we're going to have to fill to convince everybody that this program is really worth the effort that everyone is putting into it -- issues like, how do you manage otitis media in the first several years of life in a child with known sensory neural hearing loss, and do you change the way you approach it? What kind of speech-language milestones would you expect as you have well-baby visits coming in? There are lots of different issues that I think need to be dealt with in a forum that's easily accessible by the primary-care community. We have not only pediatrics, we have a large number of -- probably a majority of newborns in the United States who are cared for by family practitioners and, therefore, we need to develop with them additional outreach kinds of education as well. So we're working diligently to continue to support what we consider to be spectacular efforts that are being made. Of course, the Walsh bill I think will move this along to an even greater extent and provide the kind of resources necessary to do these kinds of specialized follow- up studies. I can certainly respond to any questions. [No responses] JUNE HOLSTRUM: Thank you, Pat. The spokesman for the NIDCD was not able to be on the teleconference today, but she asked me to provide some information about the request for applications for intervention strategies following identification of neonatal hearing impairment. The NIDCD invites research grant applications that address intervention strategies following identification of neonatal hearing impairment. The areas of interest include, but are not limited to, hardware, for example hearing aids, cochlear implants and other sensory aids; behavioral treatment programs; development of outcome measures to determine the benefit of intervention strategies and studies on the efficacy of intervention. The application receipt dates are: the first one was February 18th; there will be another one June 18th; and another one October 18th. To get more information, you can visit their web site at: www.nih.gov/nidcd. Once you get to the NIDCD home page, then click on "Grants and Contracts," then click on "Current Opportunities," then "Request for Applications," and once you get there, go to the 1998 Intervention Strategies. They have quite a bit of information on how to go about doing this. Another way to get more information is to contact Amy Donahue. Her e-mail is ad42@nih.gov. Any other questions, just contact that web site or Amy. Now, Linda Rose, the Update on the EHDI Data Workgroup. LINDA ROSE: Okay. Thanks, June. As most of you all probably know, the definitions for the National Database on Newborn Hearing Screening was sent out for widespread comments at the end of last year, 1998. We received several comments and incorporated those and also incorporated some comments from our teleconference on the national database about two weeks ago. That finalized version is ready to go out in the next couple of days to our core working committee for final adoption. CDC has graciously agreed to be the repository for the data and is planning to pilot the data items in six states around the April time frame. We hope that the data items will be available for all states to submit data in July of 1999 for the calendar year of 1998. I'll just close with a comment that one of our original purposes of the database was to have this information accessible to the general public someplace like the Internet or someplace where anyone could access the data items. At this point, I understand that's not going to be available through CDC, so that's probably one issue that we will kind of be working on in the future. That's all that I have. June? JUNE HOLSTRUM: I did want to say that the information will be available on the Internet for anyone to view. It will be accessible. Any questions for Linda? HALLIE MORROW: Linda, this is Hallie from California. Do you know when people who are not on the core workgroup will get to see the version of the data elements? LINDA ROSE: We're probably going to give that group a couple of weeks just to make any final comments. I don't think we're going to have too many changes at this point. I can send it out to anybody who is interested at any point, but I guess also what we're going to want to do is after we start the pilot in April, we may have to make some adjustments depending on how the data comes in and how we're able to work that. So we may not have a finalized version until just before we want a report on it, you know, like in May or June, but if you want an updated version right now, I'll be happy to send that to anybody. You can contact me e-mail, and my e-mail is now working for those of you that had problems with it. It is lrose@ehh.state.la.us, and I'll be happy to send that out to you. HALLIE MORROW: Okay. Thanks. JUNE HOLSTRUM: Any other questions for Linda? [No responses] All right. Before we close, are there any last comments or announcements from any of the listeners? Any updates from the states? [No responses] If not, that's our program for today. Our next meeting will be May 4th. Again, thank you for joining us and we'll talk to you in May. |