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CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) convenes the March, 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, March 7, 2000 Table of Contents I. Welcome and Announcements June Holstrum II. National Early Intervention Coalition for Deaf and Hard of Hearing III Annual Survey of UNHS Programs IV Update from Marion Downs Center V Hands and Voices Parent Support Group
JUNE HOLSTRUM: Hello, everybody. I'm June Holstrum with the Centers for Disease Control and Prevention. Welcome to the March 2000 teleconference on Early Hearing Detection and Intervention, and thank you for joining us. Please remember to mute your microphones when you're not talking. Today's conference is being recorded and the transcript will be available on our website. Before we begin our scheduled program, are there any questions, announcements or comments from any of our listeners?(NO RESPONSE) Are there any states that have updates on the status of their legislation? JANE HYE: Actually, I do, from New Jersey. We have an existing rule right now which mandates risk factor screening, and what we've done is we've rewritten the rules so that starting in May of this year, all the birthing facilities will have to screen the kids with risk factors using electrophysiological equipment; and then the outer limits by when they have to screen all the babies, regardless of risk factors, is January 1st, 2002. So we have a phase-in period. And our new rules also include follow-up and education that the facilities must have criteria written up and in place by January, 2002. JUNE HOLSTRUM: Sounds excellent, Jane. Are you fairly sure this is going to go through? And if so, when? JANE HYE: We're fairly sure it's going to go through. The comment period is finished. We've written our responses and we made a few minor technical changes, and we expect them to be published about three weeks -- somewhere around three weeks before May 8th. JUNE HOLSTRUM: Good. Well, keep us updated. That's great. KEN ROSENBERG: I have a report. Ken Rosenberg from Oregon. We were at a regional genetics conference last week, and I got reports for status of newborn hearing screenings from three states out here that might be of interest. None of the three states have any legislation, but they have different levels of success. Idaho has no legislation but has about fifty percent of the kids in the state currently getting newborn hearing screenings; Alaska has no legislation and has about forty percent; and Washington State has no legislation and about eleven percent. JUNE HOLSTRUM: Okay. Thanks, Ken, for bringing us that update. Is there anybody from Nebraska on? I saw a news article on Nebraska in last week's paper. It said that Senator Byers was introducing a new bill. Anyone from Nebraska? JULIE MILLER: Yes. This is Julie Miller from Nebraska, and Senator Byers has introduced legislation. Actually, it's done everything except the final vote, which is anticipated to be today. This legislation doesn't mandate universal newborn hearing screening, but it does require education to happen in the hospitals and it does require that if by the year 2003 we don't have ninety-five percent of the infants being screened, then it will become mandatory. JUNE HOLSTRUM: I believe there was something on there about Medicaid paying for it, too, wasn't there? JULIE MILLER: That's right, yes. Initially, it was requiring insurance to cover it. That was amended and now it's just Medicaid that would be required to pay for that. JUNE HOLSTRUM: Okay. Great. Thanks. Anyone else have any updates for us? KEN ROSENBERG: Actually, I have a question. Ken again. Somebody said that Arizona has about eighty-five percent newborn hearing screening without a law. Is that true? KARL WHITE: They have over eighty-five percent of babies being screened now. They have legislation that's old legislation related to high-risk screening, but they do not have a law that requires universal newborn hearing screening. So they've done it without a law in place. JUNE HOLSTRUM: So it can be done. Great. I wanted to bring you an update on the status of the CDC EHDI's RFP. There's not much new to say since our January conference. We have written the RFP and it's now circulating through the CDC system. We hope to have it out by May, which would mean that it would be due back to us sometime in July with funding sometime around September. It will be a cooperative agreement and it will emphasize the development of a tracking system that will prevent loss-to-follow-up. It will also emphasize integration of the EHDI data with other newborn screening programs such as the blood spot screening, birth defects, immunizations or whatever tracking and surveillance system the state happens to already have in existence. Tracking systems, as some of you, was also mentioned in the MCHB grant announcement and we plan to work closely with the MCHB recipients to develop and integrate the system of tracking and surveillance. Our next announcement was going to be from Mike Adams, but, unfortunately, Mike had another commitment, so he asked me to update you on the U.S. Preventative Services Task Force Report on newborn hearing screening. As many of you know, the Task Force publishes recommendations for the clinical preventative services, and these recommendations are particularly influential to hospitals, physicians, and managed care organizations. Last year, the Agency for Health Care Policy and Research convened a new task force comprised of non-governmental experts on evidence-based medicine. The task force chose EHDI as one of the twelve issues that they will critically analyze. Their preliminary review of evidence is expected in the month or so and the recommendations for EHDI are expected later this year. The current recommendations states that there isn't enough evidence one way or the other to recommend UNHS. So we're hoping they will see that the evidence is now sufficient to recommend UNHS. If there are no other announcements, we'll go on to Colorado. Arlene Stredler Brown is going to talk to us about the National Early Intervention Coalition for the Deaf and Hard of Hearing. Arlene, are you with us? ARLENE STREDLER BROWN: Good morning. The National Early Intervention Coalition for Deaf and Hard of Hearing is a group that was brought together this year for the first time, and it was an activity sponsored by the Marion Downs National Center to address the changing needs of infants and young children with hearing loss and their families when these children are receiving early intervention subsequent to the establishment of screening programs in their states. The members are numerous and varied. We have professionals from early intervention training programs, professionals from clinical programs. We have professionals from agencies and university programs that are providing training and technical assistance. We have professionals from programs that are writing curricula specific to infants and young children with hearing loss. Parents of deaf and hard-of-hearing children are members and deaf and hard-of-hearing adults working in the profession are members. Some of these people come from non-categorical programs, some specific to children with hearing loss. So our goals are lofty at this point. We want to assure that early intervention is recognized and integrated into the follow-up procedures of universal newborn hearing screening programs. We think it's important to interface with Part C, development disability associations, public health, and the DSHPSHWA groups, both at the state level and nationally, while recognizing issues that are specific to children with hearing loss. We want to encourage the development of specialty certification or endorsement programs for early interventionists working with deaf and hard-of-hearing children. We want to identify the needs applicable to both pre-service and in-service training programs and create a plan to obtain funding to support this training and research in the field. We have prioritized five activities. One is to establish service coordination guidelines for children with a confirmed hearing loss. The second is to develop and disseminate a fact sheet about early intervention to deaf and hard-of-hearing children under the age of three and to target audiences to receive this information. Targeted audiences include; physicians, Part C agencies, hospital screening programs, and parents. Our third activity is to develop a website so that the activities of the coalition can be publicized. Fourth, we want to survey parents of deaf and hard-of-hearing infants and young children in a variety of states. We would like to look at the parents' attitudes, identify gaps in service, and strategies for filling these gaps. And the fifth activity is to identify the unique components of a parent-centered program specific to deaf and hard-of-hearing infants and young children. The group is moving at different rates on these five activities. We plan to get the group together again this grant year, and a plan for expanding the membership of the group will be the topic of our next meeting as we look at funding in the next four years with the new grant that's coming up. So questions or comments are welcome. (NO RESPONSE) JUNE HOLSTRUM: Thanks, Arlene. Any questions for Arlene? (NO RESPONSE) Keep us updated on this, Arlene. This is very interesting. We would like to keep updated on where you're going and how you're doing. ARLENE STREDLER BROWN: We'll do. We would be glad to. JUNE HOLSTRUM: Next, we have Karl White with his Annual Survey of UNHS Programs. Karl? KARL WHITE: Thanks, June. For the last several years, the National Center for Hearing Assessment and Management here at Utah State University has done an annual survey of the people in each state responsible for newborn hearing screening programs to determine the extent to which states have implemented universal newborn hearing screening programs. This year, as we did it in October, November of '99, we also included questions about how people rated various obstacles to the implementation of UNHS programs and also the degree to which Medicaid was reimbursing for newborn hearing screening in those states. The results of that survey are posted on our website at www.infanthearing.org. Just a few highlights from it. There are now eleven states and/or territories who are screening more than ninety percent of the babies born in that state: Colorado, Connecticut, Delaware, Hawaii, Iowa, Mississippi, New Mexico, Rhode Island, Utah, Wyoming, and Guam. There are another four states that are screening over eighty percent of the babies. These numbers come from the person in the state who has been identified by the Title V Director in the Department of Health as being the person who is responsible for newborn hearing screening. In most cases, that's a person in the DSHPSHWA group, although not in all cases. A correction, or at least a different perspective on what you mentioned a little earlier, Ken, our numbers are that about seventy-two percent of the babies in Idaho are being screened. As you all know, the status of newborn hearing screening continues to change very rapidly. These numbers are as of last November. By now, I'm sure that some of them are outdated. There are a number of those states who are over ninety percent who don't have legislation in place. Iowa would be one. Delaware is another. New Mexico is another. This is the second year we've included questions about the obstacles that people see interfering with the implementation of universal newborn hearing screening. The rank ordering of the obstacles remains about the same, although the severity of those obstacles is declining this year. People viewed unwillingness of third-party payers to reimburse for newborn hearing screening as the most serious obstacle to universal implementation. Others in the top five were hospitals are not willing to add another procedure, equipment is too expensive, lack of appropriate hearing diagnostic services for infants and young children, and false alarm rates are too high. Those were the same top five last year. With regard to the degree to which Medicaid reimburses for newborn hearing screening, there's a great deal of variability across states. This year we had data or answers to that question for forty-six states. It is clear that there are inconsistency and disincentives to Medicaid reimbursement policies for newborn hearing screening. Thirty-four percent of the states indicated that the hospital-based newborn hearing screening is never covered by Medicaid. In an additional forty percent of the states, they said it was covered in theory but only as a part of a lump-sum payment for the delivery of the baby. Thus, in those states, even though they say that Medicaid covers it, the hospital doesn't receive any additional money if they add newborn hearing screening. In twenty-one percent of the states, Medicaid only pays for hearing screening done on an out-patient basis. Only thirty-one percent of the states include hospital-based newborn hearing screening as a specific part of their EPSDT plan. Interestingly, the amount paid for Medicaid for newborn hearing screening, as reported by those state contact people, ranges from eight dollars to one hundred dollars. If there are any questions, I would be happy to try to answer them. KEN ROSENBERG: Karl, do you have information about centralized registries? KARL WHITE: Tracking systems? KEN ROSENBERG: Yes. KARL WHITE: We've included that before, but we did not include it this year. I have a fairly good idea, though, of what's happening there. We just put up on our website some new information regarding legislation in the twenty-two states that have passed it and which of those include, as a part of the law, a central tracking system. I don't have that right in front of me, but, as I recall, there's about fifteen of them. KEN ROSENBERG: I'm concerned actually about the larger question about whether we have any evidence that a centralized tracking system improves the number of kids who get tested. KARL WHITE: That's a good question. I am not aware of any evidence that directly addresses that issue. JULIE MILLER: This is Julie Miller from Nebraska. Although I don't know exactly of research that addresses that question, I think there would be plenty of anecdotal reports from states' metabolic screening programs that would say it's absolutely essential in increasing the numbers and making sure that kids get screened. KARL WHITE: I think you are right, Julie, except that I suspect the number of kids that actually get screened in the hospital wouldn't go up as much, but that the number of kids who receive timely diagnosis and intervention would change dramatically. In all of the centralized systems that I'm familiar with, data isn't actually reported to that system until after the baby leaves the hospital. So it's at that point that the real benefit begins. JULIE MILLER: Right. And I would agree with that. I think it's probably also for those babies born out of the hospitals, that it would help increase the numbers of babies screened. JUNE HOLSTRUM: Thank you, Karl. Now we'll go back to Colorado for an update from the Marion Downs Center, Vickie Thomson. VICKIE THOMSON: I want to share with all of you that the Marion Downs National Center staff has been involved in a number of new publications that have recently come out. First of all, Clinics of North America for Pediatrics and Clinics of North America for Otolaryngology. The recent seminars in hearing (inaudible) was completely devoted to the publication from the National Symposium that was held in Denver two years ago. There's also a Volta review article that's soon to come out on early intervention. So we're just excited about the wealth of new publications that are coming out from everyone on newborn hearing screening systems. I also want to share with you that the Marion Downs National Center is going to have a summer symposium again and that will be held July 20th through the 22nd in Denver. So watch for more information about that. We have some wonderful keynote speakers lined up, so we're very excited. Christie Yoshinaga-Itano and myself had the opportunity yesterday to attend the AMCHP meeting in Washington, D.C., the American Maternal Child and Health Program annual conference, and it was interesting to really look at the consensus of the newborn hearing programs and ways to collaborate more with the metabolic newborn genetic screening programs. It appears that maybe over the years we've been duplicating efforts and we certainly have, I think, a lot to learn from that group as well as integrating our efforts in terms of educating physicians, educating parents, and also integrating the data management systems. I think more and more states are going to be looking at that, just as you have mentioned, June, for the future rather than duplicate separate data systems and look at how we can, at the health departments, integrate those systems to track babies. So I think that's pretty exciting. I'm going to, at this point, turn this over to Janet Des George, who is sitting right next to me and talk about Hands and Voices. Then we can entertain any questions you might have. JANET DESGEORGES: Hi, everybody. It's nice to be with you today. Can you imagine a meeting where those in attendance include: parents of a child who is hard of hearing in the mainstream class setting, a grandfather of a child with a cochlear implant, a hearing father whose son's native language is ASL, a mother whose daughter is in an oral program, a mom with a tiny baby in her arms who's daughter has just been identified with a hearing loss, and members of the deaf and hard-of-hearing communities, spending time together talking about issues that unite us all, providing a language-rich world for our children to thrive in? If that sounds like a dream to you, it's not. It's what has been happening here in the state of Colorado over the last four years through an organization called Colorado Families for Hands and Voices. It's a parent-driven support organization for families who have kids who are deaf or hard of hearing. Some of our involvement here in the state includes the following: we've been instrumental in passing the deaf child bill of rights here in Colorado; ; we've been working on hearing aid legislation; we've been able to include parents annually in a statewide symposium that was previously traditionally just for professionals; we provide in-service training to deaf education professionals. We come together with the premise that: " what makes the choice right is what works for your child." We've been very successful here in the state of Colorado, that if you begin with that premise, you move straight on to issues that are important to all of us as parents. Topics such as: educational excellence, legal issues surrounding the Individual Disabilities Education Act, the problems of social isolation, the power of parents in a child's education, emotional/behavioral issues of students, the importance of role models for families and children. Are you getting the picture here? The list goes on and on. We have had so much enthusiasm and excitement that a growing support for the mission of our unique parent-driven, nonprofit organization that exists to provide unbiased support to families with children who are deaf or hard of hearing has prompted a new direction for us to begin a national organization. This national organization will function a lot like Colorado's local chapter with an emphasis on reaching out to families who need a resource for information, advocacy training, and support. Hands and Voices' philosophy is based on the belief that families will choose the right path for their child and that they should be given balanced, equitable, and complete access to information so that they can make that choice. Some of the early goals of our national organization are to produce a website, newsletter, and present at national conferences including the Symposium on Newborn Hearing coming up here in Colorado in July. We are very excited. We are also feeling slightly overwhelmed at the response we have had. We have people from all over the country contacting us wanting to start a philosophy-based chapter such as ours in their state. So… we're still on the ground floor, and I appreciate this opportunity today to tell you about this organization. And for people who may be interested or know parents who are interested in joining us as we embark on this endeavor, you can contact me through the Marion Downs National Center - this would probably be a good point of contact at this time. I'm the current President of the state chapter of Hands and Voices. Leeanne Seaver is the Executive Director of our national efforts. So if you would like to contact us, what we're doing at this point is sharing what we have done here and you can contact me through our e-mail, which is mdnc@spot.colorado.edu. here at the Marion Downs National Center, and I will keep you informed as to when our website will be up and running. Thank you. JUNE HOLSTRUM: Thank you, Janet. Any questions for Janet? LEEANN RAMSEY: Is this your website address, the http://www.mdnc@spots.colorado.edu/? JANET DES GEORGE: No. That's our e-mail address. LEEANN RAMSEY: Do you happen to have a website? JANET DES GEORGE: Are you asking me if Hands and Voices has a website? LEEANN RAMSEY: Yeah. I've got the Marion Downs' one. I didn't know if maybe you had developed your own site. JANET DES GEORGE: We are right in the middle of developing it. So if you want to e-mail me, I'll start a list. Then as soon as we get our website up and running, which we're hoping for in the next couple of months, I can let you know. LEEANN RAMSEY: Okay. Thanks. JUNE HOLSTRUM: Janet, have you had a chance to review Krista's storyboard? I know that Arlene has and gave us some wonderful feedback on it. Have you had a chance to look at it? JANET DES GEORGE: You know, it just came to my desk this morning. I am definitely going to take a look at it, yeah. JUNE HOLSTRUM: Great. Thank you. Any other questions for Janet or for Vickie? BRANDT CULPEPPER: I have one question for Janet. Hi, this is Brandt. How open would you be to having students involved in helping you-all kind of coordinate getting started? JANET DES GEORGE: Very open. Anybody who is interested, they're definitely invited to contact me. BRANDT CULPEPPER: I might ask them to contact you, then. JANET DES GEORGE: Okay. Great. JUNE HOLSTRUM: Any other questions for any of the Colorado folks or for Karl? Just a comment for Vickie. Vickie, when the Volta Review article is out, keep us updated on that, if you would, and also on any more information on your conference for the summer. We would like to hear about it. VICKIE THOMSON: Okay. Great. JUNE HOLSTRUM: Well, I guess I've been too busy this last couple of months working on the RFP, so we have a short conference. Is there anyone that would just like to bring up other issues? We have time left. EVEY CHEROW: June, it's Evey Cherow at ASHA. This has been a great conference call, lots of good information. It's exciting. I'm just wondering if you could go back to your first announcement regarding the RFP. I understood you to say, I think, and that's why I'm asking, that you'll be working with the MCHB grant recipients in terms of the tracking, or are these opportunities for other groups as well? JUNE HOLSTRUM: We would like to make it as open as possible and other states the opportunities to join in on the discussions. What we hope to do is have monthly teleconferences that would be open for anyone that would like to listen in on as we develop the tracking and surveillance. KEN ROSENBERG: June, if we have time, one of the things that would be great for me to hear about is what experience states do have in linking their newborn hearing screening with newborn screening through electronic birth certificates. JUNE HOLSTRUM: Hey, Brandt, that sounds like a question for you. BRANDT CULPEPPER: We are actually in the process of trying to collect data on how many states have tracking systems that relate to the newborn hearing screening and other screening programs that are ongoing. Maybe that could be a (inaudible) and if anybody knows -- KEN ROSENBERG: We probably have some resources on the call right now. BRANDT CULPEPPER: Right. KEN ROSENBERG: I can just say that in our regional genetics meeting, there was a mention of something that I was not -- I didn't quite understand the details, but newborn metabolics screening (in Alaska, I believe)has apparently put some kind of a bar code, I believe, on the filter paper and is starting to link it with their electronic birth certificates, which -- I want to try to find out a little more about what that is, but the more that kind of stuff is happening, the more it will help each of us understand what's going on and what we can do. KARL WHITE: Actually, that may be in Alaska -- This is Karl White from Utah -- but we're also doing that same thing here in Utah. Now, it's just in the initial stages right now. There are three hospitals that are supposed to start March 15th doing it. The filter paper has been printed with the bar code on it. There are little stick-off labels that go onto the electronic birth certificate and the newborn hearing screening, and we're going to run that for about three or four months in those three hospitals to see how well it actually links up and then the plan would be to go statewide with it in the fall if everything goes well. KEN ROSENBERG: Karl, I don't understand enough about bar codes. What actually is on that bar code information? KARL WHITE: Actually, I'm sorry, it's not a bar code in Utah. It's just a unique identifier number. So the same unique identifier will be in the metabolic screening database and the vital statistics database and in the newborn hearing screening database. That will then allow better integration of the data sets. MARTIN LAUER: The bar code is on the filter paper and then it's added to the other two? LAURIE MICHAELS: Laurie Michaels from Kansas. And Kansas also links its filter papers for blood spot screening with birth certificate using a bar code. MARTIN LAUER: Yeah. So it has to be introduced by hand to the birth certificate? KARL WHITE: Yeah, at this point. That's the way it's done now. Maybe in Kansas with the bar code, it doesn't. That may be why they're doing it. JACKIE CUNDALL: I really can't answer that, but I would doubt that we're doing it by hand. KEN ROSENBERG: Do you know what's in the bar code? JACKIE CUNDALL: We have not implemented it yet. On our reprint for our metabolic screening form, we have put a place for hearing screening and will use that as our method. It's not been implemented yet, but we're having the forms printed and the data entry will go right along with the birth certificate and the metabolic screening. KEN ROSENBERG: What state are you from? JACKIE CUNDALL: Tennessee. We're just in the beginning stages. VICKIE THOMSON: This is Vickie Thomson from Colorado. We have also have integrated, along with the genetics screen, onto the electronic birth certificate. And, basically, the genetic screen portion, the EBC just populates their data so they know how many babies have actually been born. Obviously, the lab results go directly to the state health department lab, but we are given then the information specific to the results of each ear for the infant hearing screening. As well, if there are no results, there should be a code as to why. For example, was the baby transferred, deceased, missed, or the parent refused. Then we are able, through a separate program that we've developed, individualize hospital reports so that that baby's name stays on that hospital report until something has occurred in terms of follow-up if the baby failed either ear or there was a code attached to that. We're pretty excited. We're still in the implementation stages, but the hospitals that have been doing this regularly for about the last five or six months are doing a fabulous job. It does require coordination between the screeners and the electronic birth certificate clerk, whoever that may be. At some hospitals, it may be somebody in medical records. In some hospitals, it could be somebody right on the birthing unit. We're very excited. It will eliminate our monthly manual tracking report and it will really give us information on every baby born in the hospitals. We're also hoping that we'll be able to track these babies through our local regional health departments so that they can work with the hospitals to assure that babies get back in for either rescreenings or on to appropriate diagnostic follow-up and then on into early intervention. So we're pretty excited about it. KEN ROSENBERG: So which one comes first? The identification of newborn screening or the ID number for the birth certificate? VICKIE THOMSON: The ID number for the birth certificate. JACKIE CUNDALL: In Tennessee, we do the reporting system and the referral system just like we do on metabolics. And rather than send -- Well, we will send results to parents, to the physician, to the hospital, and then instead of a genetic center or a sickle cell center, it will go to our early intervention people. And they have agreed to do even the initial follow-ups rather than our public health nurses. Then they will be right there in case they are diagnosed with a problem and will have the opportunity to be enrolled there. It will be a direct link from us to them. JUNE HOLSTRUM: Thank you, Jackie. We, of course, are very interested in this and we actually had planned to have a conference this month on this very topic. But then we started inviting people and realized that we were getting a lot of state people in and we might be accused of playing favorites and some people are getting more inside information for the grant announcement. So we put that conference off until after the grants are back in. This will probably be sometime in June when we have a conference. We'll want to get together with people who are already linking data and see if we can come up with a comparable way that everyone can do it so we can have some national data on this. It's good to hear that a lot of states are already getting started and have some good ideas on how to do it. Any other comments, questions, issues that anybody wants to bring up? EVEY CHEROW: June, it's Evey Cherow again. So how will this link to the national database that you have and our (inaudible) project database? I'm thinking about the implications for that. JUNE HOLSTRUM: I think that's something that we'll need to work out in these conferences, how do we link these all together so that it makes sense together and that we're not all just doing these separate little things and that it will be all integrated and make some sense so that caregivers and they can get information they need to do their follow-up. EVEY CHEROW: Thank you. JUNE HOLSTRUM: Any other comments, questions, issues? (NO RESPONSE) If not, that's our program for today. Our next meeting will be May 2nd. Again, thank you for joining us and we'll talk to you soon. Bye-bye. |