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CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) convenes the November, 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, November 9, 1999 Table of Contents I. Welcome and Announcements
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Pat Dewey - Virginia Gail Tanner - Illinois Lauree Chase Kubow - Mississippi JUNE HOLSTRUM: Hello, everyone. I'm June Holstrum from the Centers for Disease Control and Prevention.Welcome to the November teleconference on early hearing detection intervention. 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 begin our scheduled program, are there any questions or announcements or comments from any of our listeners? MARTHA CARMEN: Perhaps I finally have some good news to report on federal legislation for newborn infant hearing screening. A year ago November, when I told you that our bill, we were not successful in getting it included within the Labor, Health and Human Services appropriations bills. But this year I have much better news. The language of HR 1193, which most of you are probably familiar with, as well as funding for -- was included in the Labor, Health and Human Services appropriations bill that will be on its way to the President shortly. As I mentioned, the language from that text was included. There will also be $3.5 million dollars for HRSA, $3.5 million dollars for CDC, but unfortunately our NIH money did not make it into the bill. We do consider this to be a victory for kids in families, especially since we've been working on it for such a long time, like many of you have been doing at the state level. And we're almost over the goal line. There is still some back and forth between the Congress and Administration over some other provisions within the Labor, Health and Human Services appropriations bill, which means there's a chance that it would be vetoed for reasons having nothing to do with infant hearing screening. Harris and Walsh and I are very confident that whatever version of this bill that is signed into law, that the language that we've been working on from HR 1193 will be included and will be signed into law this year. I don't want to go on with too much more detail right now, but I'd be happy to take any questions or you can contact me in my office at 202-225-3701. Thank you. JUNE HOLSTRUM: Thanks for that update, Martha. Are there any questions for Martha? (No response) Well, thanks again for joining us, Martha, and for the good news. MARTHA CARMEN: Thank you. JUNE HOLSTRUM: Our first announcement from CDC is that the Federal Interagency Coordinating Council, FICC, has just announced its call for family member nominations to the FICC. In case you're not familiar with FICC, it is authorized by IDEA (phonetic) to ensure the effective coordination across federal agencies of federal early intervention of preschool programs and policies for children with disabilities who are eligible for services under Part C. Family members play a very important role on this council, and the deadline for applications is January 2000. Parents and other family members may nominate themselves or state and local agency coordinating councils, or any other public or private agency or organization may submit nominations. So if you know of a parent who would like to get involved in advising and assisting the Secretary of HHS, the Secretary of Education and other federal agencies, this would be an opportunity for them to get involved. So if you're interested or you know of a parent that might be interested, let me know and I can send the nomination packet. Or if you want more information you can call Libby Doggett, and her e-mail is Elizabeth_Doggett@ed.gov . That's Elizabeth_Doggett@ed.gov , or her phone number is 202-205-9068. A second announcement is that there's going to be a change in our Web address again, and this time it'll be better instead of worse. The new Web address we've tried to simplify, and I'm not sure it's working yet. I tried it this morning and still haven't gotten on through that. But within the next few days, it should change to www.cdc.gov/nceh/ehdi. I will be sending out the call for EHDI teleconference presentations within the next two weeks, so anyone who has announcements or reports that would be of interest to the EHDI group, please get it out and send it in. JUNE HOLSTRUM: Our next announcements come from Tracy Schooling from ASHA. She has an announcement about the universal newborn hearing screening component of a national outcomes measurement system. Tracy, are you with us? TRACY SCHOOLING: Yes, I am. Thank you, June. As June mentioned, I am with ASHA and specifically with a group inside ASHA called the National Center for Treatment Effectiveness in Communication Disorders. And we were set upby ASHA to coordinate all outcomes and efficacy work for the association. And we are now accepting applications for the universal newborn hearing screening component of the national outcomes measurement system. This is the first audiology component of the national outcomes measurement system, and it is designed to determine the outcomes associated with an audiologist-managed newborn hearing screening program. To qualify for inclusion in this project, applying newborn hearing screening programs must be managed by an audiologist who is also an ASHA member. We will be giving preference to hospitals with at least -- or programs with at least 1,000 births annually and to programs in states where newborn hearing screening legislation is already in place. Participants in this project will be provided at no charge with a specially designed screening and information software program. We will select approximately twelve sites across the country to participate, and applications should be received by December 1st. For more information or to request an application, folks can contact me at 301-897-5700, extension 4486, or through e-mail, and my e-mail address is tschooling@asha.org . JUNE HOLSTRUM: Any questions for Tracy? UNIDENTIFIED: Tracy, what's the average amount of the award -- the effective -- to be given out? TRACY SCHOOLING: We will not be giving out any direct financial awards. We will be giving a software program that is of substantial cost that we will be giving out to participating programs, and just asking them to collect the data points that we've established in the program and submit it to us on a periodic basis. And in return we will submit back a report that summarizes and analyzes each participating facility's data and will include next to it national averages so that they can begin to benchmark their own facility's performance. UNIDENTIFIED: Tracy, when would that information be available to folks to look at, or would you all be summarizing that in any way for general use, or -- TRACY SCHOOLING: Yes. We will release probably an annual report. It's typical of the other ways we've done this, and we don't expect to kick off data collection until January. So it would probably be the following January when something would become available. UNIDENTIFIED: Thanks. JUNE HOLSTRUM: Our next report will be from Marin Allen, who is with NIH/National Institute on Deafness and Communication Disorders, and she's going to be talking to us about their recent report on communicating informed consent to individuals who are deaf or hard of hearing. Marin. MARIN ALLEN: Hi, June. I just wanted to be sure that the group is aware that the report is available, first of all, on our Web site, and I'll give you the Web address in a moment. It'll also be available in hard copy by the end of the month. We set up this working group in May in order to clarify issues of informed consent to develop guidelines for use by scientists who were recruiting deaf or hard-of-hearing individuals to participate in clinical research, and to highlight materials for the scientific community use in facilitating clear communication between deaf or hard-of-hearing. These are volunteers and scientific investigators in clinical research. And we also were looking for new and needed materials for improving communication about the informed consent. Informed consent has become increasingly an important issue throughout the research community, but there really wasn't a piece that was household for deaf and hard-of-hearing individuals. So to subject them to scientists who were more -- who were familiar with the area of deafness and hearing impairment to use as guidelines. And that was really sort of the sense of why we developed the working group. The contacts for the working group were Dr. Cowan Stearns, whom you may know. She's a (inaudible) physician in upper New York State. And Dr. John Madison, who is at the National Technical Institute for the Deaf, who's hard-of-hearing and is an expert in reading and literacy. That's his scientific area of expertise. Gary Willis, at the Office of Research Risk at NIH, which is now going to be at the department soon. Glen Wilfon from the National Human Genome Institute. Bob Johnson from (phone interruption). Edward McClay from the national -- he's from California at Northridge. Pat Bertrix (phonetic), the attorney here at NIH, who deals with issues of informed consent. Nancy (phone interruption) of the NAE. Karen Emory. Tom Friedman, whom you probably are familiar with their work, and Brenda Schick and John Nicarco (phonetic) from Hopkins rounded out the group of experts on the panel. We would invite you, please, to not only take a look at the guidelines and make them available within your constituency, but also we are going to continue to add to the resource list at the end of the report of informed consent and guidelines as you find them on the Web. And if you find additional resources that you think would be helpful to the scientific community, please just send me an e-mail and we'll be happy to attach those to the growing reference library there for scientists and for deaf and hard-of-hearing individuals who want to participate in clinical research. And we're looking at this as very broad-based, but it's not only clinical research related to arenas of deafness but in any client where there is heart, lung and blood research, or cancer research, but so deaf subjects can see what some of the issues, the way to do informed consent or for working within that community. The web site is http://www.nih.gov/nibcd/news/inform/%20toc.htm . You will also note at the bottom of the description of who was on the panel. If you first go into the Web site, there is a place where you can print out the entire text without having to go through each page of the text in order to be able to print it. So there's a box at the bottom of that first page that says print full text. I'll be happy to take any questions, and hope that you find the research useful. JUNE HOLSTRUM: I'm sure it'll be useful to a number of people. Any questions out there for Marin? EVIE CHEROW: Hi, this is Evie Cherow at ASHA. Just wondering -- a quick question. Marin, has this been distributed beyond the distribution on the Web site? Is there a plan for distribution? MARIN ALLEN: Yes. Actually, we are. I said that we were making hard copy available at the end of the month. I know that Jim just distributed copies at the American Society of Human Genetics, and we intend to distribute it through the scientific community and make it available to the organization to use with their membership in hard copy. EVIE CHEROW: I wonder if there would be any use to distribute it through the American Hospital Association as programs are beginning to set up -- MARIN ALLEN: I think it's a good idea, and if you can help us out with that that would be terrific. EVIE CHEROW: Let's talk. MARIN ALLEN: Okay. Great. JUNE HOLSTRUM: Our next speaker is Joni Alberg. She is Executive Director of Beginnings, and she's going to be telling us about a wonderful resource. Joni. JONI ALBERG: Thank you, June. I'm here with one of our parent educators, Erin Lucas , and if there are questions afterwards, between the two of us we should be able to answer them for you. The actual title of our organization is BEGINNINGS For Parents of Children Who are Deaf or Hard-of-Hearing, Inc. We are a non-profit agency based in Raleigh, North Carolina, and we also have an office in Charlotte, North Carolina. We've been in existence since 1987, and our primary mission is helping parents of children who have a hearing loss become informed, empowered and supported. And this is throughout the process of first learning that their child has a hearing loss, and then the decisions that they will make throughout the early years and school years of their child's life. We'll work with families until the child turns age 22. Probably what we're best known for is that we provide non biased information to parents, particularly about communication options. We do not promote any one placement option or any one communication method as being the best. We say here is all the information we know about what's out there, and as a family you need to make a decision for yourself and your child as to which communication method and which type of educational placement will work best for you. And we direct them to programs where they can observe, parents they can talk to, a variety of things. We provide our service in a variety of ways. Referrals come to us from a variety of sources—audiologists, local school systems, health departments. And parents often will refer themselves, or a family member will refer them to us. When we first get a referral, we'll contact the referring professional to obtain background information and then we contact the parents. We tell the parents about our services. We offer to come out to their home and meet with them, which is particularly important when they first learn that their child has a hearing loss. All of our services are free to parents in North Carolina, and that's an important distinction. Our primary funding source is through our Department of Health and Human Services here in North Carolina, and to them through mandated legislation from our North Carolina General Assembly. We also, provide services and support over the telephone to parents and professionals. We'll send information. We'll go to IEP or IFSP meetings. We'll observe in classes. We'll meet with teachers. Whatever the family has a need for, we'll do to help them access the services that they believe in and want for their child. We also work with professionals who work with children who have hearing Loss. We will conduct workshops, in-service, seminars, attend meetings. And we try to do a lot of the outreach and awareness to let professionals know that we're here and are available to provide services and information. In addition to our primary services in North Carolina, we have a Web site and an 800 number. People from all over the country, and in fact all over the world, access it and ask us for information, and we respond to these requests as well. Our 800 number, if you're not familiar with it, is 800-541-4327. Our Web site is http://www.beginningssvcs.com/ . Finally, on Tuesday nights from 8:00 to 9:00, we host a chat room through http://www.parentsplace.com/ , and if you go to our Web site it will tell you how to access it. Parents call in from all over the country and sometimes other parts of the world to talk about issues that they have about their own children. Please join us there. That's pretty much my overview. Are there any questions, or questions maybe for Erin about what the parent-educators do? We'll be happy to answer them. UNIDENTIFIED: This is Tennessee. On the funding, that mandate, you said, was that to set up for this particular program, or was that through your hearing screening mandate? JONI ALBERG: Good question. This funding was set up quite a few years ago, and it was specifically designed to fund our organization. We get a little bit of money from other places, but the primary funding is through the NC Dept. of Health and Human Services (DHHS). We are a mandated service. When anybody in our state, whether it's a pediatrician, an audiologist, or other first identifies a hearing loss, they must refer the family to BEGINNINGS. NC’s Universal Neonatal Hearing Screening just went into mandated effect on October 1st. We're still new with that. BEGINNINGS worked hard to help get that established as well. UNIDENTIFIED: And this was not part of your early intervention, Part C? JONI ALBERG: No, we're not. We're a completely separate organization. We work closely with Part C programs. We work closely with public school programs and the preschool programs, but we are a completely separate entity. UNIDENTIFIED: Are you part of a children with special health care needs program? JONI ALBERG: No. We're totally independent from any other program. We work with them all. And that's the challenge. We do a lot of networking (phone interruption), a lot of outreach and trying to coordinate our activities with other activities that are already going on in the state. So we do a lot in terms of working with other similar focused organizations, but we are completely separate. UNIDENTIFIED: In addition to the support that you give to families, what are other services that you provide to families? JONI ALBERG: I have pretty much described what we provide. We provide emotional support; whether that's over the telephone or in person; we provide resource direction for them---either within in their community or elsewhere, sometimes in other parts of the country; we will attend school meetings with them, including IEP, IFSP meetings, or just meetings with their teachers; and we will talk with the teacher(s) about classroom modifications. What we do for a given family is determined on an individual basis, depending on what the families' needs are. Our ultimate goal is to help the parents become empowered and confident enough to advocate for services on their own. But if they really want and need our support we will help them, as I said, until the child turns age 22. Oh, Erin reminded me. We have a parent manual that we give to parents that has a lot of resource information as well as information about communication and hearing loss. We provide articles and videos. We have three video tapes that we developed and we will give these to parents to keep. One shows the five different communication methods. One has parents talking to other parents, and one shows that children with hearing loss can and do achieve the things that hearing children achieve in their lives—in spite of a hearing loss. This really helps parents who are still at that first initial stage of, "My gosh, my child won't be able to do anything." So we have all of those things that we give to parents. Those are also available to parents and professionals outside of North Carolina for a small fee. For parents, the manual and the videos are available for ten dollars. And for professional, it's twenty-five dollars for each. JUNE HOLSTRUM: Thank you, Joni. Any other questions for Joni? That was very interesting, Joni. Thanks for being with us. JONI ALBERG: You're very welcome. Thanks for inviting me.JUNE HOLSTRUM: There's new legislation in Oregon on your agenda, the Web address to access the Oregon bill, and we have asked Ken Rosenberg to update us on the Oregon progress. Ken. KEN ROSENBERG: Hi. In 1997, the Oregon legislature was asked by a citizen group to require all hospitals and birthing centers to screen newborn hearing before discharge. The legislature passed this law as an amendment to an unrelated bill, which was vetoed. The legislature came up with a proposal for a study group to report to the Oregon Health Division in time for the 1999 legislative session. The report to the 1999 legislature recommended the following provisions: Universal newborn hearing screening to be phased in over six years. In the first two years, eight to ten pilot hospitals to set up the system, figure out training, and set up a data system. In years three and four, all hospitals would screen, and in years five and six we would focus on birth centers and pick up stragglers. The report also recommended that the hearing screening results for each newborn should be transmitted to physicians and parents for follow-up and to the Health Division for quality control. The result of those recommendations is Oregon House Bill 3246, which was signed into law in September 1999, less than two months ago. HB3246 includes the following provisions: First, that every child born in a hospital or birthing center with more than 200 births a year would have screening within the first month of life, preferably before newborn discharge. The hospitals and birthing centers would inform the parents and providers of the results within ten days after the test and provide a list of diagnostic testing facilities. And they would annually provide aggregate data to the health division: how many children they screened and how many had abnormal results. Second, the hospitals and birthing centers with less than 200 births a year would tell parents about the importance of newborn hearing screening. Third, the Health Division would, among other things, appoint an advisory committee and would make recommendations to the next legislature, which is in 2001. Our legislature meets every two years. And that among the recommendations would be how to increase the rate of newborn hearing screening, especially for children born in small hospitals and birthing centers. The law will be taking effect July 1, 2000. The law, as passed, does not contain any provision for hospitals to report individual newborn hearing screening results to the Health Division -- only aggregate annual test results. It turns out that 39 of the 59 birthing hospitals (and none of the 4 birthing centers) in Oregon have more than 200 births a year, and that over 91 percent of all births in the state occur in those hospitals. Many of the advisory committee members will be professionals and advocates who participated in the development of the 1998 report. But it will also include all known opponents of the bill and will try to operate by consensus. We're doing a survey of all licensed Oregon audiologists to find out who has experience doing newborn hearing screening and diagnostic testing to determine what resources we have for training and for diagnostic referrals. And our first meeting of the advisory committee is November 22nd. We have a lot of work to do to get this thing going before July 2000. JUNE HOLSTRUM: Thank you, Ken. Any questions for Ken? FRAN STEPHENS: Hi, this is Fran Stephens. JUNE HOLSTRUM: Hi, Fran. Go ahead. FRAN STEPHENS: Ken, was there any dollars attached to your legislation? KEN ROSENBERG: None for the providers and none for the Health Division. FRAN STEPHENS: In New York, our hospital association has been the one that is opposing screening because of the cost issue. How did you manage to do that? KEN ROSENBERG: As far as we know, there was no significant opposition to the law in the legislature, apparently because the representative who chaired the committee was a strong proponent of the law. Our understanding is that the hospital association and two of the major insurers tried to have the Governor veto the bill, and that he considered vetoing the bill, but he did sign it. There will certainly be a lot of public education about newborn hearing screening when the law takes effect in July 2000. And over 90% of babies will be screened and their parents told about the testing and told the results. I think that within a couple of years it will be considered routine and state-of-the-art, and parents who don't get it will be unhappy. And the result will be pressure to expand the mandate. I think we got lucky because of a very good legislator. I was actually quite surprised that the legislation passed: there has been a lot of tension around insurance mandates in recent years. The legislators decided to treat newborn hearing screening like an EKG instead of treating it as a PKU; it's possible that the next legislature will be advised that it should be done differently. FRAN STEPHENS: Thank you very much. JUNE HOLSTRUM: Any other questions for Ken? EVEY CHEROW: This is Evie Cherow again. I'm wondering if Fran -- or if you want to do this later, if we could just get an update on the New York law and what's happening with that, with the Governor not signing it yet, et cetera. FRAN STEPHENS: Well, real quickly, my report said he should have signed it yesterday, and I can't get an answer on whether he actually signed it or not. He has ten days to sign it from when it was sent to him, and that date was yesterday, unless I got my calendar dates wrong. And I've been madly sending notes to our legislative contact office and can't get an answer. So sometime in the next day or two I ought to know whether he signed it or not. KEN ROSENBERG: What was the bill that he was supposed to sign? FRAN STEPHENS: It was for the health department to create a program for screening newborns for hearing impairment. It didn't mandate it, and it gave hospitals an out. However, it's a beginning. So if he signs it I think we'll finally see some movement and some action here, although the bill itself is pretty wishy-washy. KEN ROSENBERG: Will that bill also cover New York City? FRAN STEPHENS: Yeah. Boy, are we going to have fun. JUNE HOLSTRUM: Thanks, Fran. Any other questions before we go on? One of the most frequently-asked questions that we get that's, of course, has just come up in -- related to the Oregon and New York about universal newborn hearing screening, is how are hospitals getting reimbursed for the screening. Now most states are still struggling with this question, and hospitals are using a variety of methods to pay for this service. Today we asked three panelists to tell us about the hospitals in their states and how they are dealing with this issue. Our panelists are Pat Dewey from Virginia; Lauree Chase Kubow from Mississippi; and Gail Tanner from Illinois. Whichever one of you would like to go first, go ahead. PAT DEWEY: Well, I'll go. This is Pat Dewey. What's occurring in Virginia is really no different than what other states have experienced or are experiencing, I know. Just a quick background: Mandated newborn hearing screening has been in place in Virginia since July 1st of this year. Hospitals with neonatal intensive care services, both specialty and sub-specialty levels, are now required to screen all infants prior to discharge. By 7/1 of 2000 all hospitals will be required to screen all infants prior to discharge. Hospitals are not required to do follow-up here, but they are required to inform parents and primary medical care providers in writing and report the infants who do not pass the screening who need follow-up, as well as monthly data to the Virginia Department of Health, and the Virginia Department of Health is responsible for trying to track the follow-up. This was an unfunded mandate. The mandate for coverage of screening is not a part of the Code of Virginia at this time. There were bills introduced in both 1998 and 1999 General Assemblies unsuccessfully. The issue will most likely be reintroduced in our January of 2000 General Assembly. Our Special Advisory Commission on Mandated Benefits which reviews all mandated benefits bills did review the '99 legislation, and did respond favorably to it and make recommendations that coverage be included in children's insurance coverage wording within the code of Virginia. So it'll be up to the patron and others to pursue this next year. But obviously, hospitals are frustrated that they are required to do something for which there's no specific reimbursement. Hospitals with audiologists and audiology departments have established their programs within their hospitals using audiologists or nursing staff or paid screeners to do the screening. Those hospitals that had no audiologists on staff sought advice from local audiologists, community audiologists, to plan their program. Some hospitals contracted with outside entities, either a local facility or a local audiologist, a nationwide group such as Pediatrix, which is also in other states, in some cases with independent neonatology group practice that serves that hospital to perform the screening. Where hospital staff are performing the screening, there's no outside entity, they are not receiving separate reimbursement. In other words, they're having to eat it. Some hospitals have decided not to even generate a charge, either through insurance or Medicaid, because they consider it to be their standard of care and so included in whatever else they're providing to the infant. Others, some with audiology departments, would generate a separate charge, I think just to get it documented, but there's no separate payment that comes from that. It simply comes from the bundled reimbursement for the newborn care. In those hospitals where there's an outside contractor a separate charge is generated, and some insurances are paying. Some are not. Medicaid does for the most part, it appears. There doesn't appear to be a difference as to the type of hearing screening performed as to whether there's reimbursement -- in other words, OAE versus ABR, automated versus not. Some contractors are charging a high rate because they know they're going to have to write off over 50 percent, in some cases 75 percent, of their charge. Some have based their charges on the Medicaid reimbursement rate, and some do use a modifier to the CPT code when billing to indicate that it's a screening versus a full diagnostic test. Medicaid in Virginia reimburses approximately $43 dollars for OAE, the limited, that's the 92587; and approximately $109 dollars for auditory evoked potentials, the 92585. In some of those hospitals that have paid screeners, they're paying perhaps eight to ten dollars an hour. In northern Virginia they're paying upwards of fifteen dollars an hour because they want to keep the screeners that they have invested money and time to train. UNIDENTIFIED: What's the reimbursement for automated ABR? PAT DEWEY: There is no difference between automated and regular, as far as the CPT code. There's only one code. One company in particular, one insurance company in particular, is reported statewide to be just not paying, and I'm not going to mention any names. Others, who perhaps at first were denying, have now begun to pay. Obviously, billing agents must be persistent. One has actually developed a letter that explains the program and the state mandate, and sends it out to insurance when they deny and they rebill. Reasons for denial range from not medically necessary, and then they try already paid in the per diem, and then finally, they'rjust stating they won't pay and they don't give a reason. Comments from a couple of the providers in the screening programs: One said, "we want to advocate for the parent, and we end up writing off our charges. We're not going to take people to collection over newborn hearing screening. However, we do have to generate this bill to put pressure on the insurance plan." And their thoughts are that when families contact the plans and ask why these things aren't covered, or when they learn to expect that this should be a covered service as a part of the quality of care, then changes are going to occur, hopefully. Another person commented that, "we're concerned we're going to starve before reimbursement is forthcoming or when it's no longer an issue." That's all I have. UNIDENTIFIED: Pat, you made a mention of the Virginia Department of Health and given the mandate to track. Do I understand you correctly, that the Virginia Department of Health was given no money to track? PAT DEWEY: That's correct. UNIDENTIFIED: And do you know what their plan is about how they're going to handle that? PAT DEWEY: Well, we've already -- this has been my program for quite some time, and we already did have a data base, an ancient data base in place since we mandated identification of risk in the late '80's. And we have this year replaced that reporting and tracking system with a new system, and hospitals are hooked up to a Web-base reporting system, so we do have that in place. And we're just using Title V money. UNIDENTIFIED: Thank you. JUNE HOLSTRUM: Thank you. Any other questions about the Virginia system? UNIDENTIFIED: Yes, I do have a question. This is Rusara (phonetic) from South Miami Hospital. For those insurances that are paying for these procedures, do you know the CPT codes or the ICD-9 codes that they use? PAT DEWEY: My knowledge about this is somewhat limited, but it's the -- there are only three CPT codes. There are two for OAE and one for auditory evoked potentials. And then there -- in some cases there are modifiers that are used with the CPT code when billing to indicate that it is an automated or a screening procedure versus a full diagnostic procedure. UNIDENTIFIED: But you don't know the numbers. PAT DEWEY: Yes. OAE limited is 92587, and auditory evoked potentials is 92585. And I don't have the full OAE in front of me, but you can look it up in the book. UNIDENTIFIED: Yeah, I will do that. What about the ICD-9 code? The diagnostic codes, as he calls them there. PAT DEWEY: No, I'm not so familiar with that. UNIDENTIFIED: All right. Thank you. JUNE HOLSTRUM: All right. Mississippi or Illinois. GAIL TANNER: I can go ahead, from Illinois. This is Gail Tanner from Illinois. In listening to everyone else, things like these are happening in Illinois. It seems like most of the states are suffering the same kinds of things. Our legislation was signed in July of this year, to be effective in December of 2002. So unlike Oregon, we've got a little lead time to get this put together. I'm really amazed that you can put it together that fast. We are in the process of putting our advisory committee together. This committee will propose rules and regulations which will determine just exactly what will be required and what doesn't have to be done. Right now we have very few guidelines to go by. This past winter, through MCH and Early Intervention funds, we were able to give grants to 47 hospitals to initiate the newborn hearing screening process in those hospitals, anticipating that it would be mandated. Now those hospitals are starting to report their screening results to us. As part of the requirement of the grant, the hospitals were required to report to the Department of Public Health any children who failed the second screening. Public Health is charged in the grant and in the legislation with doing the tracking and follow-up on these children. And to my surprise, there's no money tied to it. This seems to be the standard song. Public Health has been doing the tracking for genetic and metabolic screening for many years, and we're going to tie into that program on our database with what we call our CANTMIIS system, which is the Computerized Accessible Network for Tracking Mothers and Infants Information System. Once this is established in the hospitals, and we're doing installation now, they will be able to enter demographic and hearing screening information along with the blood stick tracking number, download it to the state, both to the lab and to the department here centrally. We'll be able to access this information, add follow-up information, lab results on the blood specimen, and then the next time they replicate, they automatically get this information back. So although we're going through great birthing pains with this, we hope it's going to work out well. As far as insurance is concerned, in Illinois paying for screenings, there's always been a bit of a problem with Medicaid in the state in that they essentially don't pay for services done by audiologists unless they result in fitting a hearing aid. So primarily these are adult services. If the doctor does the screening, no problem. Anything the doctor does is okay, and they can bill for that and get paid. But when it's an audiologist or someone else, it's been a little bit of a problem getting reimbursement. There is a work group in Illinois that's been working with Medicaid to try to improve these services and get acknowledgement of the audiologists and the screeners as the providers of the screening and to get reimbursed for that. Insurance carriers, some are covering at a 100 percent level, some at 90 percent, some at 80 percent. There was one carrier that began paying when the screenings were initially billed, until the point that they realized that this was going to be on every baby, and then they suddenly stopped paying and started saying that they weren't going to cover it. But in hospital negotiations with that carrier, I think it was an HMO, they're going to renegotiate the bundled fee at the end of their contract year to increase the fee and include newborn screening. So I think they're working with the insurance carriers. Most of them are responding positively, and it really is going with the flow, we're glad to see. UNIDENTIFIED: I'll ask two questions, Ms. Tanner. Grants to the 47 hospitals, how large were the grants? GAIL TANNER: It was a total of just over a million dollars. They range anywhere from about $6,000 dollars to $45,000 dollars, depending on the number of children to be seen, the kind of equipment they wanted to buy, what kind of staffing they had. The limit of the grant was $50,000 dollars per hospital. But several of the hospitals didn't even come close to requesting that much. With the grants they could buy one piece of screening equipment, so they were really limited. Programs that are doing the screening, are rescreening with the same equipment rather than maybe an ABR screening and an OAE rescreening. But this was seed money to get them started, and we wanted to start as many as we could. UNIDENTIFIED: Where did you get the money to give them the grants? GAIL TANNER: The money came through early intervention Part C. It was through our Department of Human Services, not through Public Health. We kind of have a different system in Illinois. We have a Department of Public Health and a Department of Human Services. Human Services is where all the MCH/EI money goes, not to Public Health. KEN ROSENBERG: I have a little anecdote that I want to tell people. This is Ken Rosenberg again. I think it was from Illinois. I had a conversation with a nurse who does tracking for newborn metabolic screening, and apparently she found that it was possible to improve the quality of newborn screening, the metabolic screening, by having it linked to birth certificates. She has been trying to get, for the purposes of improving their data and the ease of follow-up, and that she had newborn hearing screening linked to the newborn metabolic screening. And the new hospitals in her state were required to work within that system. And she's piloting linking them with birth certificates, and it's going on at two hospitals already. She hopes in others. Is that Illinois? Is that right? GAIL TANNER: Not that I know of. We're not involved at this point. Our systems are not connected up to the birth certificates yet, unless there's a pilot going on somewhere and I'm not aware of it, but I don't think it was Illinois. KEN ROSENBERG: It might not have been Illinois. But the key that was interesting was that the hospitals would key off of the billing data at the moment that a newborn baby was generated in their billing system, and suddenly there would be spaces for a data system for newborn hearing screening, a data system for newborn metabolic screening and the birth certificates. And then each piece of the government that then needed access would get access to a single thing, and that presumably the hospitals would find it easier maintaining separate data bases. GAIL TANNER: And ideally, the CANTMIIS system and the birth certificate system will tie in together somewhere along the line, but we're not there yet. We're still in the installation period for this genetic metabolic and hearing screening follow-up. At this point it's not tied to the birth certificate. But yes, indeed, it would be wonderful if they didn't have to enter that data over again and again and again. UNIDENTIFIED: And that's what Tennessee plans to do also, is tie those three things in together, and we're partway there. JUNE HOLSTRUM: I think we'll have to move on. Mrs. Kubow, from Mississippi. LAUREE KUBOW: All right. What Mississippi was able to do, we do have a law, and our law went into effect -- the first couple of parts of our law went into effect in '97. The last parts went into effect in '98. And it's a real, real nice law, and it mandates that the Department of Health is responsible to ensure that the newborn screening process is done as far as the data collection and all that. But the law specifically notes that the physician is responsible in ensuring that the child has the hearing screen. And just like other states near where our law was passed, it did note that there should be financial support, but of course no money was in there. But anyway, the Department of Health, through Part C in Mississippi, it's called infantile or early intervention, using federal money, looked at where we were -- and in our state, there was only about 90 licensed audiologists, and we birthed about 40,000/41,000 babies a year in the entire state. And we looked at how we could do it. So the Department of Health paid for some machines. And we happened to have chosen AABR simply because when you look at the large amount of geographical area and the small amount of audiologists and people are far apart, that would probably be the best at that particular point. And again, remember this was evaluated in '95 and '96 and decided in '96. And we're up to the point. We're in 1998. We're looking at about a little over 41,000 births in the entire state, and according to our statistics that we presently have it looks like about 40,000 were actually screened in the hospitals. And the entire state will guide 53 hospitals that birth 100 or more -- 53/54 that birth 100 or more babies per year, and they all screen on site. Now the Department of Health does not here or ultimately work high (inaudible) equipment you use. It's just that given our state, if you want to use the AABR machine and we and the hospital didn't have it, then we would get that. It's just that not saying that OAE is not good; it's just that it was not the best given our current situation. Work with the hospitals, and one of the good things that the hospitals had, if they had somebody tying them all together throughout the state so they don't necessarily feel that they are one in a million or that they're having to do all their fights by themselves. So about the machines, there were six hospitals in the state who already had their machines. And for those who already had their machines and wanted to ensure universal screening even there, and there were a few that were not doing universal, just high-risk only, but they all do universal now. And we assisted them in buying some of their supplies. And we buy approximately 60 percent of the supplies that the hospitals use for a year. We've been doing that for a couple of years now, and hopefully we'll be able to do it for a little while longer. So that's how they got their equipment if they didn't have it, and that's how they got their supplies. Also, we asked the facilities to do their policy and procedure within the hospital, as to who would do what. And we worked up a brochure for the hospital to use, and also a card -- we call it the baby's hearing record. And one good thing, in working with the department of health is because it's hard coming from state entity that it's also responsible for, so you get some consistency within the state, and we just instituted the cards. This year we are seeing some of them being used. There are still some hospitals that are not fully using them yet. We're their -- there are some -- and they're color-coded, so that hopefully at some point all health care providers will say, oh, mom or caregiver, let me take a look at your hearing card. And if it -- the particular color this is, either the child did not pass the screen or the child needs to go for diagnostic, then they can help ensure that that mom gets wherever that mom needs to be, or if there's some problems or whatever. And on the back side of their card, it's on the same level as immunization card. On the back side is hearing developmental milestones, and talking about progressive hearing loss also. Okay. So all the facilities got the card. We also did a teleconference with the facilities to talk about all of the different processes, and we just recently did get to the point -- the program -- that it is a full-fledged program. It does not have money of its own, but we still have the ability of using Part C funds within the state to help the program stay alive in a couple of positions. And those positions, one of them is the hearing screening coordinator that will deal directly and only with the hospitals and the diagnostic intervention coordinator that will deal with the diagnostic and intervention aspects. When you talk about reimbursement, about two and a half years ago I visited with Medicaid and kind of told them what we were doing and wanted to do. And of course, like all other states, we didn't have the CPT code. But what Medicaid did say that they would do is -- well, this is what we asked them. We told them that our plan was to ask all hospitals to do a hearing screen prior to hospital discharge, and if the baby didn't pass, at least one were an outpatient, and they said that they would put it in the per diem for the in-house. If a hospital had equipment to do on-site screening then that would be put in the per diem, and then at the end of the year they could evaluate how soon the per diem needs to be increased or how soon could it increase the per diem. And that, depending on the hospital and all that good stuff -- I'm not sure of all that. But, anyway, that that could happen that way, and if there was a need for a -- seen as an outpatient, they would pay for you separately. And the per diem at each hospital's a little bit different. So there is no one figure that I can give you that is being paid. Now that was about two and a half years ago, and they did a particular code and it starts with a V. Deborah, are you there? DEBORAH WILSON: Yes. I'm looking it up now. LAUREE KUBOW: Okay. And this is the code that Medicaid made. And let me do say, I'm in the state of Illinois, and I'm calling at the courtesy of Decatur Memorial Hospital in Decatur, Illinois. DEBORAH WILSON: It's W-9523 code. LAUREE KUBOW: Okay. And correct me if I'm wrong, Deborah, that's the code that Medicaid has the ability to -- would you explain a little bit. DEBORAH WILSON: That's the code that Medicaid came up with themselves to bill. The code is used for within the physician's office or audiologist's office. For the third screening in the hospital, what they used is the B code, which is B-72.1, In order to seal (sic) for that particular screen that's done outpatiently (sic). LAUREE KUBOW: So they've been real nice in working with us. We went back to Medicaid several months ago and told them that we were looking at a third screen, if at all possible two prior to hospital discharge, and if the newborn did not pass those two to reschedule another one as an outpatient no less than 2 to 3 days past discharge but no more than a month, so we can meet our monthly milestone goals. The cost of this third screen is a whole lot less than would be the cost of a diagnostic evaluation, so Medicaid was kind of real nice in saying, yeah, we'll do that, too. And so I'd just like to say that they've been pretty good to us in their modifications, and they want us to report some good stuff, plus it will also help the hospitals keep down their referral rate. Within the law, it does note that the hospital has a responsibility of sending the requirement by the state and that a statistical -- well, the number of the amount of babies that were screened, and we took EHDI's format that Linda Rhodes and everybody there had made up, as far as what we want them to report. And we got 1 through 5, just like we have to report to June every year, and the hospitals have now, and this is something that we just started this part of it in September. And for some hospitals it's going real nice, and for others there are bits we don't understand, and so it's going to take a little bit on some. But anyway, they report that to the department of health in that particular format. Let's see -- I forgot what I was going to say. And the screening report. And we recently redid our screening report, and the screening report comes to department of health for all missed babies. And there's not many of them, but there are some if the baby's born in a non-screening facility, if there was a no-show at time of third screen, or if there is a referral for diagnostic evaluation at time of third screen, or if the child has a progressive hearing loss indicator. Now, all hospitals are not sending it on progressive hearing loss indicators, but some are. And it's, you know, we think it's a good thing and we wanted to increase the work on that. But we -- the number of babies, those five things have to be reported, and the screening report has to be sent from the hospital within two days of referral for diagnostic evaluation. We recently did a questionnaire with the hospitals to see if they were using the cards, to ensure what audiologists they were using, and even for some areas there may not be an audiologist. There may have been one in the past, but none right now within that given area. And also, if who is informing the parent of the process as far as consent is concerned, we asked the facilities what did they do with their PKU's. And most facilities have that as one of their standing orders, and we ask them that they probably just treat it just alike. That since however they do their PKU processes as far as the consent's concerned, we also are encouraging them to do parent education, because in order to get that parent to come back at that third screening process and to ensure that the physicians know the results of the screen, it's real important to ensure that the parent has knowledge. And we also give them the brochures to give to the parents and anything else that we can get our hands on for the parents. Okay. And with them having to do the screening report, and if department of health makes the screening report and it's on NCR paper with several different pages and a log reporting system, we get some consistency in the reporting process irregardless (sic) as to where the hospital is within the state. We also did a diagram for the hospitals, kind of a flow chart as to a suggestion on how they can do their screening process. And some say, oh, it's just real fantastic, and we've got those that we're still working with. The majority of the hospitals in the state do use AABR. For those that use OAE, they do have an audiologist that evaluates it. And, let me see -- that's kind of where we are. JUNE HOLSTRUM: Well, thank you so much, Lauree, for taking time out of your honeymoon to join us. That was awfully nice of you and your husband. We did get started a little bit late, so we will take maybe a minute or so for some quick questions. If not, I think most of you know how to contact our three speakers if you have other questions. We have heard today several ways that UNHS programs are funded. We would like to continue this session in our next teleconference because there must be at least fifty ways to fund the UNHS programs. So those of you that would be willing to be on January's teleconference to tell us how the hospitals in your state are being reimbursed for their program, please give me a call or send me an e-mail and let me know. Before we close, are there any last comments or questions or announcements from the listeners? UNIDENTIFIED: I'd like the phone numbers for Pat and Lauree and Gail. PAT DEWEY: It's 804-786-1964. LAUREE KUBOW: 601-576-7427. GAIL TANNER: 217-782-4733. And I just have one question for Lauree. Why are you taking your honeymoon at the hospital in Decatur, Illinois? LAUREE KUBOW: Well, we came to visit my in-laws, and my brother-in-law and my sister-in-law work here. GAIL TANNER: Well, that's okay. You don't have to answer. You're thirty minutes from me and I just thought that was different. JUNE HOLSTRUM: That's our program for the day. Thank you for joining us. Our next meeting will be January 4, 2000. Again, thank you for joining us, and we'll talk to you next year. |