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CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) convenes the January, 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, January 4, 2000 Table of Contents I. Welcome and Announcements II. Year 2000: Collaboration Efforts and Agency/Organization Roles in Promoting Early Hearing Detection and Intervention. National Association of the Deaf American Speech-Language-Hearing Association American Academy of Audiology Joint Committee on Infant Hearing American Academy of Pediatrics Office of Special Education and Rehabilitation Services Maternal and Child Health Bureau National Institute on Deafness and Communication Disorders Centers for Disease Control and Prevention RUTH PEROU: Hello. Welcome, everybody, to the first EHDI conference of the new Millennium, except in Cuba who does not officially recognize the new Millennium, but we'll see if we have any representatives from there. My name is Ruth Perou, and I'm sitting in for June Holstrum today, who is out-of-town, but she might be joining us at some point. I'm just going to go ahead and go through the agenda. I'd like to welcome everybody on board, again, to the first conference of the new year. And the first announcement is that -- I keep hearing people joining in. We were just beginning. So, don't worry, you haven't missed anything. The first announcement is that CDC is happy to announce the availability of funds to assist states in developing or enhancing state-based early hearing detection and intervention programs and to conduct applied research related to EHDI. This initiative will be carried out through cooperative agreements to state agencies or to universities acting on behalf of states. The CDC cooperative agreements will be designed to assist states in setting up their data collection and tracking system to ensure infants/children with hearing loss are not lost to follow-up and are enrolled in appropriate intervention services as soon as possible. Funds will be available for two levels of funding. Level I will be for states who have no centralized tracking system or who are in the initial stages of setting up their tracking system. Level II will be for states who have a good start on a centralized system. Funds for these states will enhance the tracking system and enable states to collaborate with CDC on research activities. These research activities will require additional data collection and possibly linkage to other data sets. We anticipate that the Request for Proposals will be issued in late March or early April and awards will be made in the summer of 2000. Are there any other announcements? (NO RESPONSE) Okay. We're going to go ahead and move on with the agenda since it's pretty full. We want to give everybody a chance to say what they need to say. I'm going to ask that the speakers remember to cover the three main points that we're looking for. First, talk about your role in EHDI; second, discuss specific activities your agency or organization is involved in or conducting; and, third, talk about any collaborative efforts that you're involved in or will be involved in. First, I would like to start with Kelby Brick from the National Association of the Deaf. Kelby? KELBY BRICK: Good afternoon, everybody. This is Kelby Brick speaking to you through an interpreter. And before we start, I would like to ask if everyone who does speaks identify themselves by name first before they speak, since we can't identify you by voice. The National Association of the Deaf has been very, very involved with the Walsh Bill, you know, and we've all known that it's been passed; and we have also been very, very involved in advising state legislators in developing their own Walsh Bill versions. Since that, we've received a lot of complaints from those states that have already passed bills that there's not enough intervention -- intervention efforts for parents, involvement of the parents and the hospitals, and they're told by the hospitals that their child is deaf without any real follow-up services. And most people receive some kind of printed-paper information, but they don't know how to go any further to get further assistance, you know, and those screening efforts are really worthless without any follow-up services. So, you know, that's the purpose of the whole effort, to improve language skills and language opportunities for the deaf infants. With those states that are developing their own state legislation, you know, we see the same kind of weaknesses again, again, and again. There's not enough parental involvement and not enough representation of the deaf community and not enough involvement by people who are trained in language development of deaf children. For all those reasons, the NAD has been collecting state laws that have been passed and studying those and making an analysis of those. And we will be developing, and are in the middle of developing, our own model bill, which we will be distributing to those states who have not yet had the bills passed -- their own bills. And with this model bill, we hope that we would have better involvement of different aspects and different parts of the deaf community -- the education community, the parental community -- so that the infants and the families can receive appropriate services after they have been screened. We welcome feedback for our draft model which we should be completing. We're in our first draft process and we will be very, very happy to show it to anyone for feedback before we make the final draft. If anyone would like to be involved in that feedback process, please feel free to get in touch with me and e-mail me at brick@nad.org or fax me. The fax number is 301/587-1791. I prefer e-mail, but if that's not possible, fax is just fine. Thank you. RUTH PEROU: Thank you, Kelby. Any questions for Kelby? (NO RESPONSE) Okay. Thank you. We'll move on to Jim Potter from the American Speech-Language-Hearing Association. Jim, are you there? JIM POTTER: I am. Thank you. I'm going to take a couple of minutes to talk about ASHA's advocacy efforts. As you recall, we tried to provide a convening role last year in helping push the Walsh legislation through, and we're going to re-double those efforts on both the state and federal level. I've also asked Evey Cherow to also talk about our practice activities. But, briefly, this year {we are advocating that the Walsh legislation be funded at its} fully-authorized level in the Walsh legislation of $15 million for fiscal year 2001. Again, that’s $15 million for the year 2001. This is the amount we are requesting and we fully understand and appreciate the role of the federal agencies in that they cannot actively lobby on this issue. I'm sorry. I should have made that clear up front. We will be trying to convene all the organizations that were involved in helping pass the Walsh Bill last year in the near future, probably within the month, to develop some specific strategies on forwarding that agenda. [Words in brackets above were substituted and several phrases were omitted to eliminate what might be interpreted as lobbying.] On the state front, we've been working with a number of state organizations, the Governor's Office, and state legislators. Currently pending before state legislators are provisions in Pennsylvania, Tennessee, Maine, Ohio, and we've recently been contacted by Kentucky and are working with them to develop a broader provision to introduce in the near term. At this time, I'd like to turn this over to Evey Cherow to talk about her practice area. EVEY CHEROW: Hi, this is Evey, and I just want to mention several activities that ASHA is involved in at this time. We have established a working group on audiologic assessment of children that will be updating the ASHA guidelines on audiologic assessment for children birth through thirty-six months of age. The members of that group include: Allan Diefendorf, Coordinator; Kathy Beauchaine; Patricia Connelly; Bob Nozza; Jack Roush; Diane Sabo; Anne Marie Tharpe; and Judy Widen. In addition, we've been actively involved in providing input to the National Center for Education in Maternal and Child Health, their development of a document called "Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents" and have provided input with regard to infant hearing screening into that chapter. We are still very involved in supporting the work related to Health People 2010 health objectives for the nation and the infant screening and intervention aspects related to that document and look forward to promoting those objectives when the document is unveiled. We have planned several workshops and teleseminars for the year 2000. One will be an on-line course on "Otoacoustic Emissions from A to Z." We have a teleseminar planned, "Practically Speaking" about universal newborn hearing screening that will highlight the Joint Committee on Infant Hearing 2000 position statement. We have one on the "Genetics of Hearing Loss and Genetic Counseling: What the Practicing Audiologist Needs to Know." That's a self-study product. We've made a self-study product out of the teleseminar we did on family-centered early intervention for children who are deaf and hard-of-hearing with Mary Pat Moeller and Arlene Stredler-Brown. That will be available as a self-study. And we will be doing a comprehensive workshop on "Pediatric Audiology Service Delivery: Meeting Legislative Marketplace and Consumer Needs" in the fall. So in addition to our work with media interviews, which seem to be growing on a regular basis -- There's a lot of media interest. We're doing a lot of interviews and ongoing personal consultation with our own members and other agencies with regard to the establishment of universal newborn hearing screening and intervention programs. I hope that's helpful. JIM POTTER: Evey, thank you. This is Jim Potter again. I just wanted to mention, as I began to, we have a variety of informational resources regarding the state and federal bills moving forward. If you're interested or your members are interested, we do have services that they can get on. They can do that through www.ASHA.org, and there's a variety of materials on there. Plus, they can get on -- if they're interested and your organization permits it, they can write letters directly to their members of Congress on some of these issues. Thank you. RUTH PEROU: Thank you, Jim, and thank you, Evey. Yes, thank you for that kind reminder that federal agencies are not allowed to lobby. Okay. Next on the agenda is Vickie Thomson from the American Academy of Audiology. Vickie, are you there? VICKIE THOMSON: I am. RUTH PEROU: Thank you. VICKIE THOMSON: Hi. This is Vickie Thomson, and I'm actually representing the Task Force for Infant Hearing through the American Academy of Audiology. I want to start off by letting everybody know that AAA does have a website. It's http://www.audiology.org/. It is currently under what we would call reconstruction, but AAA has already produced a number of brochures that would be very appropriate for infant hearing systems for professionals and parents alike. So I encourage you to take a look at those brochures. They will be available again on the website soon, and you can purchase those directly through the website. So maybe you don't have to reinvent the wheel in your program or in your state. Currently, the Task Force has been working -- Karen Johnson developed a wonderful poster that is already available for display at the national and local conferences. It's to educate professionals and the public on the importance of early intervention and early diagnosis, from screening through intervention. So if you need more information about that, you can contact me directly. The best way to reach me is e-mail, and it's vickie.thomson@state.co.us. Yvonne Sininger developed a wonderful public service announcement. It's about a minute long and it has opportunities at the end of it to add your own state's information or own community information. You can also e-mail me about further There has been a support personnel document that was developed primarily by Judith Marlow, and we're just waiting for that to be approved by the AAA board and it will then be disseminated. It's the support personnel for use in screening programs in hospitals. Future activities for the AAA Task Force are somewhat a little unclear at this point, but the main activity that we'd like to look at is expanding the Task Force beyond screening to include both experts in diagnosis and early intervention so that we are assured that our professional audiologists are really aware of all the issues from screening through early intervention and that we give them the appropriate training and continuing educational information that they need. The Task Force also will be looking at the website as an opportunity to disseminate different guidelines for developing in the areas of assessment and amplification and potentially maybe even developing a model for an amplification guideline collected from the various states that already are working on those so that, again, we're not reinventing the wheel and duplicating things, but that we can provide models for our profession to utilize. Then we also make sure that we include our parents and our consumers on our Task Force to, again, help educate the profession on the importance of the consumers in the entire system. We've also had some discussion to look at working with other organizations and disseminating materials. I'm assisting in reviewing their guidelines or protocols and providing input so that we're working collaboratively with the other professional organizations, again so that we're not duplicating what's already being done. The Task Force will meet prior to the AAA conference in March, and that time has not been set yet for those Task Force members that are out there waiting to hear what that date and time is. I think that's it for AAA right now. RUTH PEROU: Thank you, Vickie. Any questions for Vickie? (NO RESPONSE) Next, Terese Finitzo -- I hope I did your name justice -- from the Joint Committee on Infant Hearing. Terese, are you around? TERESE FINITZO: Yes, I'm here. Thank you. I have the privilege of being Chair at the Joint Committee on Infant Hearing, and members include: the American Academy of Audiology -- in alphabetical order, by the way; the American Academy of Otolaryngology; the American Academy of Pediatrics; the American Speech-Language-Hearing Association; Council for the Education of the Deaf; and the directors of speech and hearing programs in state health and welfare agencies. The JCIH 2000 position statement is in its final stages. Before the statement will go to our respective member boards for approval, we always seem to have one more reference to locate, however. So that's what we're doing now. First, let me say that the statement has gone through widespread peer review that included numerous representatives from each of our member organizations and I know many of you listening today. We had seventy-six pages of comments, and I know that the JCIH members took these comments seriously as the statement has been revised over the last several months. The statement from the Joint Committee moves beyond endorsing EHDI through universal newborn hearing screening to identifying eight principles for optimal program operation. By program, the Joint Committee included hospital programs, state systems, and the national EHDI system. These eight principles are universal and encompass the components from screening, to follow-up medical and audiological evaluations, and to intervention. In addition, we also address continued surveillance for the infant at risk for progressive or delayed-onset hearing loss; guaranteeing family rights through informed choice and decision-making; guaranteeing confidentiality and security of the infant and family information and screening and other test results; the four-fold rule of integrated information management to take care of the baby; to provide the tools to achieve optimal program quality; to track and follow infants through screening, follow-up, and into intervention; and to assist in states in monitoring the demographics of hearing loss. The position statement has, as its core, an emphasis on quality. Through the statement, we have attempted to identify important benchmarks -- Benchmarks are goals or targets -- for each component of the EHDI process. For the screening process, we are -- we had published data available to us from states like New York, Colorado, Texas, Hawaii, and I'm sure I'm missing many. So that's not to be inclusive. Benchmarks for the screening process are now easily recognizable by many -- by most of us involved in this area. We've seen that it is -- we are able to screen ninety-eight percent of infants in a hospital and to pass ninety-seven percent of the infants, but EHDI is a new process and we don't have as much data on indicators and benchmarks for follow-up evaluations for the outcomes of intervention. So the 2000 position statement suggests that what our state and national systems need is to collect data so that in the years to come we will be able to judge the quality of our EHDI system. Obviously, accountability in health and education is essential today if we're going to maintain funding and the momentum that -- for those of us who have been passionate about this for years, the momentum that we've finally achieved. But beyond judging, the JCIH believes that effective systems will lead to improved language and literacy for future generations of infants who are deaf and hard-of-hearing, and that is the ultimate goal for all of us. We expect mid-year availability for the document. Thank you. Are there any questions? KELBY BRICK: Yes. This is Kelby. I have a question. Excuse my ignorance, but what is EHDI? TERESE FINITZO: EHDI is Early Hearing Detection and Intervention, and you can blame that on the CDC, I think. Just kidding. KELBY BRICK: Okay, great. Thank you. RUTH PEROU: Anymore questions for Terese? (NO RESPONSE) Thank you, Terese, and thank you for spelling out EHDI. Next on the agenda, we have Jim Lemons from the American Academy of Pediatrics. Jim, are you there? JIM LEMONS: Yes, I am. I have a relatively brief report. I chair the Committee on Fetus and Newborn for the Academy of Pediatrics, and am on the Task Force of the Academy on Early Infant Hearing Loss: Detection and Intervention. I helped draft the statement which was published February of this year from the Academy, endorsing newborn hearing screening, detection, and intervention. And my latest update -- In fact, Terese knows more. My understanding is that there are now twenty-seven or twenty-eight states that have legislation either in place or pending. TERESE FINITZO: I thought it was twenty-four, but I may have missed a few. Evey? JIM POTTER: This is Jim Potter. There are actually twenty-two states who have passed some form of legislation and within the next month we'll have probably another six to eight states. JIM LEMONS: I have twenty-two that actually have it and then five additional, but, anyway, it's been increasing certainly since the statement was published. Now with the Joint Committee Year 2000 position statement, I think it will continue to hopefully encompass the country. In order to help with further legislative endeavors, the Academy also is developing a model bill as a template for proposing universal newborn hearing screening and the programs that are necessary. In addition, a legislative packet is being developed that includes the model bill and other resources to help physicians and, in particular, pediatricians advocate for such programs in their states. The second continuing initiative within the Academy concerns education. The AAP convened an interdisciplinary hearing screening meeting with representatives of twelve national organizations involved in hearing screening systems to assess what important resources are required and beneficial. And subsequent to that meeting, a subcommittee was formed and charged to develop question-and-answer fact sheets for physicians, parents, and hospital administrators, the three major groups that we think are important constituents in effecting a successful program. And those we hope to publish in early 2000. We hope that they are succinct and poignant and relevant for the people involved. And then, finally, we were, as part of the Academy component, involved in helping to provide review of the JCIH Year 2000 position statement that Terese just reviewed. And that's our update. I know it's brief, but that's where we are at this point. RUTH PEROU: Thank you, Jim. Any questions for Jim? KELBY BRICK: This is Kelby again. How can I contact you, Jim? What is your e-mail? JIM LEMONS: It's jlemons@iupui.edu. It stands for Indiana University and Purdue University at Indianapolis. RUTH PEROU: Okay. Thank you. Any other questions? EVEY CHEROW: This is Evey Cherow. Just a comment. I noted that Kelby Brick mentioned that NAD has developed a model bill and Jim has just mentioned that AAP has developed a model bill. I just wanted to mention that there is a model bill that was developed by several of the organizations that belong to the Joint Committee on Infant Hearing that ASHA distributes to all the states in our efforts related to state legislation. I'm wondering -- And perhaps we can discuss it after this call -- if we might put our heads together so that there aren't three model bills that are confusing people who are working in advocacy in the states. So I just wanted to mention that because I know a lot of the states have used the model bill that was drafted about two years ago through a subcommittee of the Joint Committee on Infant Hearing that the ASHA state policy unit had coordinated. So I just wanted to mention that. Thank you. RUTH PEROU: Thank you, Evey. That's probably a good idea for everybody to get together and, again, emphasizing part of what EHDI and what CDC hopes to see is a lot of collaborative effort. We realize that no one agency or organization can do this whole thing alone. Next on the agenda we have Lisa Holden-Pitt from the Office of Special Education and Rehabilitation Services. Lisa, are you out there? LISA HOLDEN-PITT: Yes, I'm here. RUTH PEROU: Thank you. LISA HOLDEN-PITT: First, let me say that I'm a new staff member at the Department of Special Education Programs. I just joined within the last couple of months. So you'll have to bear with me with respect to particular questions you'll have on the programs I'll mention. Some I might be able to address here, but some I may have to get back to you on. Scott Brown of OSEP is here on this call also, and he might be able to directly answer some of your questions. OSEP has supported the goals of EHDI through the conduct of contracted studies initiated in-house and through projects in collaboration with CDC, as well as through the awards of discretionary funding of the state and local agencies or institutions. OSEP's primary contribution to EHDI logically falls into the area of intervention systems, though we're quite interested in improving the referral rate of newly-identified infants and toddlers and their families into Part C, that is, the early intervention services under the reauthorized IDEA. OSEP uses discretionary funds to support approved research and programs under varied mechanisms that can be applied to early intervention for infants and toddlers who are deaf or hard-of-hearing. The funding vehicles are not thematically based. Therefore, early intervention, family training, and informational support for child find type activities might be funded under any variety of OSEP mechanisms like field-initiated research, directed research, student-initiated research, model demonstration projects, community parent resource centers, and state-based support through state improvement plans which are managed through OSEP's state-monitoring division. OSEP funding also has been available through grants supporting the preparation of early intervention personnel serving infants and toddlers with low incidence disabilities such as deafness. Most of the project funding competitions are held only once a year, with many of those deadlines typically falling toward the end of the calendar year, though application deadlines for a few of these competitions will be held during the next couple of months. Some proposed OSEP competitions for FY 2000 are expected to be announced soon. So you should check OSEP's and Department of Ed websites and watch the Federal Register. The web address for OSEP is www.ed.gov/offices/osers/osep/index.html. As for our currently-funded projects, particularly relevant is one from the University of Connecticut called "Enhanced Child Find Through Newborn Hearing Screening." This project is to develop, implement, evaluate, and disseminate a model demo project that promotes early identification and intervention for eligible children under IDEA Part C. In the state of Connecticut through mandatory hearing screenings. Its goal is to provide information, education, and support for families whose infants are identified through the initial hearing screening. This is done first through development of resource materials regarding the screening and regarding additional evaluation if it's needed for the parents. And development of informational materials for hospital and community health care professionals involves referral, evaluation, and early intervention of these children. Finally is the implementation of a parent-to-parent model of support provided to families as they transition from screening to evaluation and early intervention. A few other titles of projects that are supported through OSEP funding are, at the University of Vermont, a project entitled "Creating Partnerships Between Pediatricians and Early Interventionists for Child Find." Another is at the University of Hawaii called "Strategies for Efficient and Effective Child Find." A third is the Utah State University's "Family-Centered Approach to Integrated Intervention" serving infants and toddlers who are deaf or hard-of-hearing, and that one was followed by a newly-funded project that includes a model of deaf mentorship in early intervention systems. Finally, the National Early Intervention Longitudinal Study, which we abbreviate as NEILS, has recently revealed some early findings from the first year of data collection through that process. The project included over 3,000 children receiving any form of early intervention service. Scott Brown is Project Director for that study, and I asked if he would just mention a few relevant statistics for this group. SCOTT BROWN: Right. Thank you, Lisa. The National Early Intervention Longitudinal Study, or NEILS, is a survey of infants and toddlers who entered Part C during the 1998-99 year. The experiences of a group of infants and toddlers as they enter the program and then are served by the program will be documented in this study. Initially, the study showed that only two percent of those infants and toddlers were reported to be referred because they had a hearing impairment. The smallness of that number caused great concern. That concern has been somewhat alleviated and I want to stress "somewhat." It's been alleviated in that the parents reported that nine percent of the children had hearing impairment. So what that probably means is that many children who have hearing impairment are being referred, but they're being referred because of some other identified reason, whether it's a developmental delay or some other diagnosed condition. In further analyses of this survey, we will be able to cross-tabulate the characteristics of these nine percent. I don't think we can do it for the two percent because that's not statistically significant. But we will be able to look at the 9% and see what their characteristics are and whether they have any unique characteristics that make that group different from other children who are served in Part C programs. Thank you. That's it for the OSEP, unless there are any questions. TERESE FINITZO: This is Terese Finitzo. I have a question for Lisa, a simple question, Lisa. What is your e-mail address? LISA HOLDEN-PITT: It's lisa_holden-pitt@ed.gov. TERESE FINITZO: Scott, maybe I missed this, and I apologize. What is the prevalence of hearing loss, if you were to take -- What did you expect? You said you had only two percent who were reported because of hearing loss. If you look at the entire Part C system, what percent, in general, have hearing loss? How out-of-line is that, I guess? SCOTT BROWN: Well, let me work through the number with you. We serve about 1.5 percent of infants and toddlers under three years of age in the country in this program. If we were to talk about overall hearing loss, you would like to ideally see a number of about one percent of all children under three. That's probably unreasonable to be able to pick all of them up at this point in time for Part C, when they are under three. Certainly, we wanted to see a number that would correspond with the one or two per thousand for deafness. If that were the case, we would have expected somewhere around the eight to nine percent of all infants and toddlers served in Part C to -- to be reported as deaf or to having a severe hearing impairment. TERESE FINITZO: Okay. Thank you. That's very helpful. RUTH PEROU: Anymore questions? (NO RESPONSE) Okay. Thank you, Lisa, and thank you, Scott. We'll move on now to Bonnie Strickland and Irene Forsman from the Maternal and Child Health Bureau. Are you there? BONNIE STRICKLAND: This is Bonnie, and then I'm going to turn it over to Irene to talk about our current initiative. For those of you who aren't familiar with the Maternal and Child Health Bureau, we are within HHS in the Health Resources and Services Administration. We're sort of the service and systems arm of the Public Health Service for children with special health care needs. Our counterparts at the state level are the state Title V children with special health care needs programs, and that's the context that we bring to this discussion. We've been involved in universal newborn hearing screening for about the last decade supporting a small, but powerful, initiative. Right now we're supporting the -- part of the Marian Downs Center at Colorado, who is represented on this call and has been providing a lot of technical assistance to states and has been very instrumental in some of the -- a lot of the progress that has been made over the last several years. We are fortunate to have received some additional funding this year with which we will support some grants over the next, we hope, four years. They are primarily targeted to developing the screening and the elements of the service and intervention systems. We are requiring that the applications be connected to Title V, to family support, medical homes, and to early intervention efforts at the state level. And I think I will stop there and let Irene pick with up with the specifics of that initiative. IRENE FORSMAN: Just to tag onto Bonnie's comments, we're also requiring significant parental involvement in advisory committees. Our guidance was released on the 16th of November and it actually has two categories. One is the grants for statewide universal newborn hearing screening, and we're anticipating supporting twenty to twenty-five states. The second category is one technical assistance project and that is a continuation, if you will, of activities that we've been involved in the past, but it is a competitive application. The applications are due on the 15th of this month. That is, they need to be postmarked by the 15th of this month. And sometime between the time that the guidance was released and I guess the week before Christmas, we had a conversation with June and Mike at CDC and decided to issue a letter stating the collaboration between HRSA and CDC in this effort. And this was partly because the CDC announcement of availability of funds is not to be available until much later. Our review is scheduled for late winter, and we're anticipating supporting the programs as of April 1st. Are there any questions? TERESE FINITZO: Irene, this is Terese. Would you tell me what you mean by CDC and HRSA collaboration? Does it mean CDC won't have its own grants later or -- IRENE FORSMAN: No. CDC has its own money and will have its own initiative, and it will center, according to what June put in the letter, on data collection, management. Whereas, ours, we obviously focus on setting up the infrastructure to support the screening program -- screening and intervention programs. TERESE FINITZO: Thank you. BONNIE STRICKLAND: One of the things that I forgot to mention, but most of you have seen this document. We did develop and disseminated several months ago a technical assistance document for hospitals beginning to implement screening programs. It was disseminated to hospitals and to state Title V - Children With Special Health Care Needs programs, and to many, many other programs. We're anticipating a second document that will focus primarily on intervention as part of the service system to make sure that children -- infants don't fall through the cracks before they are identified and enter school. So if you haven't seen that document, we can give you the access information to it. It's available through us and through the website at Utah State University. RUTH PEROU: Anymore questions? (NO RESPONSE) Well, thank you, Bonnie and Irene. IRENE FORSMAN: Thank you. RUTH PEROU: I did just want to add about CDC's effort. It is more research-focused. Whereas, your effort is much more service-oriented; is that correct? BONNIE STRICKLAND: Yes. IRENE FORSMAN: Yes. RUTH PEROU: Okay. Thank you. Next on the agenda, we have Marin Allen and Amy Donahue from the National Institute on Deafness and Communication Disorders. MARIN ALLEN: Hi, June. This is Marin, and I just am going to make a preliminary announcement note and then Amy is going to do the longer presentation. I just wanted to be sure that -- There have been several references to the Healthy People 2010 launch and to be sure that everyone knows that's happening January 25th, and we'll be able to make copies of the new vision and hearing chapter available right after that date. Just for the conference members, I wanted to be sure that you knew that the newborn hearing screening objective also now includes evaluation and intervention as part of the objective itself. There are also objectives dealing with otitis media, rehab for adults, hearing evaluations on schedule, evaluation and treatment referrals, hearing protection, noise-induced hearing loss prevention in children, and adult noise-induced hearing loss in the general population. As recently as last week, our understanding is that the noise-induced hearing loss prevention relating to workers is going to remain in the occupational chapter. So a quick overview to let you know that's where it stands right now. And as soon as we have all of the final signed, sealed, and delivered copies, we will be happy to distribute them to the members of the teleconference. And I think from there on -- Amy, are you there? AMY DONAHUE: I'm here. MARIN ALLEN: Okay, great. AMY DONAHUE: Yes. I'm just going to speak on the perspective of the research grants at the NIDCD. The role and responsibility of our institute has been and will continue to be not only helping to define the research questions but providing the ways and the means for the scientific research community to search for the answers. I'll highlight some of the current research activities that NIDCD is supporting that are particularly relevant, I think, to the early detection and hearing impairment. We have a portfolio of grants that are primarily investigator-initiated, which means that they're submitted from the community based on their own research ideas. Occasionally, if there's a gap area or a compelling research need, NIDCD initiates requests for grant applications in specific areas, and we have recently done just that with a call for applications for research on intervention strategies following the identification of neonatal hearing impairment, as well as to small businesses, to address some of these issues. We have research grants, some which are very basic and some which are much more clinical in nature. For example, we supported a multi-center study on neonatal hearing impairment. We support research on the development of cochlear function in infants. For some of our technology-oriented research, we support development of neonatal hearing screening devices. We've supported development of new measurement systems with noise-cancellation techniques so that they could be used in noisier environments, et cetera. As universal newborn hearing screening has been implemented across the country, new questions and new research issues are being generated. And in that vein, this is where the NIDCD continues to support research to answer the new questions. We recently published a request for applications for intervention strategies following the identification of neonatal hearing impairment. These applications were encouraged to address issues such as hardware, behavioral treatment programs, development of outcome measures to determine the benefit of intervention strategies, studies on efficacy of intervention. We have made $1.5 million available for the first year of support. We hope to make approximately five awards. We had three submission rounds. We have received all the applications now. We have funded one. We expect to -- That one looks at optimizing amplification in infants and young children with various degrees of hearing impairment. We anticipate funding another at our upcoming January council and then we also anticipate receiving several revised applications. So, in the near future, we do hope to have several research projects ongoing that are focused very much on these intervention strategies. We will continue to use our resources to support research and development in this area. So if you have any questions, I'm glad to answer them. RUTH PEROU: Any questions for Marin or Amy? (NO RESPONSE) Okay. Thank you. We'll go on to the next portion of the agenda. I'm filling in for June, and I'd like to update you on CDC's efforts. Again, I want to reiterate that CDC sees this whole process as a collaborative effort, and we understand that no one agency or organization can do this alone. So we look forward to working with everybody in this endeavor. With reference to specific activities, CDC is putting out an RFP, as I mentioned earlier, and that would be to assist states in developing or enhancing state-based early hearing detection and intervention programs and to conduct applied research related to EHDI. That should be coming out sometime in late March or early April. We will continue to hold these teleconferences and also we'll maintain a website. That address is http://www.cdc.gov/ncbddd/default.htm. The other things that are going on is we look forward to coordinating future conferences that would be sponsored by several agencies or organizations. Also, we had a couple of ongoing projects regarding information to families. As you know, Krista Biernath has been working with us on a couple of projects dealing with dissemination of balanced information about the spectrum of intervention options to families. One of these projects, which was completed last summer, was a pilot survey of parents and professionals concerning their knowledge and perceptions of information resources. The results of this pilot survey will be placed on our website sometime in the very near future. Our current project, which was based on results from the pilot survey, involves a proposed method by which information might be disseminated to families in the future. We look forward to more information from these projects. And, again, we will be placing them on our website. And the other effort, if I haven't mentioned it too many times, is we look forward to continuing our collaboration with all individuals in the work on EHDI. That's all on CDC's part. Are there any questions? (NO RESPONSE) Okay. Our next teleconference will be on March the 7th. As usual, you will get a reminder e-mail or fax. We look forward to hearing from everybody then. Thank you. |