As part of the Video Scrapbook, there are 12 videos clips that deal with past and future of EHDI. Transcripts of each video clip can be found below. Feel free to use any of the video clips in your own presentations.
File Size: 114 MB
Contents: 12 videos (.mpg), 1 text file (.txt) containing transcripts of videos
Transcripts of EHDI Scrapbook Video Clips
Speaker: Bee Biggs-Jarrell
Transcript: During the last couple of years, I've experienced a tremendous change in the enthusiasm of the players, particularly with a hospital perinatal nurse managers and the screeners. Two years ago only half of Idaho's hospitals were participating, now all thirty-four of the birth hospitals are participating. The other major changes that I've seen is the reduction in the percentage of referrals.
Speaker: Bee Biggs-Jarrell
Transcript: I would like to see all of the hospitals participating in our statewide data system. Many of them are started, and many of them, or some of them, still are just providing data manually, so that our little tiny state office has to input those data. In order to track those infants, the data system is really important so I look forward to seeing that strengthened and fine tuned and all the hospitals participating.
Speaker: Robert Cicco
Transcript: I happen to be one that believes that good health care should not really be mandated, this is something we should do because it's good health care. I preached that for a long time until. . .it was very hard for me to sell my hospital on this. The hospital basically made the comment to me, "When they mandate this we'll do it". Then it became apparent to me that, yes, you do need to mandate some things in order for people to buy into the fact that it's the appropriate thing to do.
Speaker: Sharon Fleischfresser
Transcript: For me…and maybe for some folks five years seems like a long time, but for someone who has worked for the government for a little bit of time it seems very fast. It seems like a very quick change. I think that the stories we hear back from families, but also from hospitals where they say, "You know, we identified a baby. That baby was diagnosed and in early intervention and getting services by less then one month of age" is really very exciting. So I think the stories we hear from both families and providers about success-- that's the exciting part.
Speaker: Sharon Fleischfressor
Transcript: Well I think that for us, and not to sound cliché, but really "leave no baby behind." So 95% is just not quite good enough. I think that really what we've always said is our goal is a 100% and we've also had the mantra from the beginning that "to screen is to intervene".
Speaker: Patti Freemyer Martin
Transcript: I've been involved in early identification with children with hearing impairment for almost twenty years, and so it's been a very exciting time because we've seen so much change in what's happened. When I first started out we thought early was two, if we got a kid who was two we were all excited about it and thought we'd made great strides. Obviously with all the changes in technology that's really hugely impacted the way that we see families and the way that we practice. So I think we've made great strides in the last decade and I certainly then see this vision with how far we can go with that because I can see how far we've come from.
Speaker: Merle McPherson
Transcript: Hearing screening needs to be seen within the context of a much bigger agenda which is referred to as the 2010 Agenda. It's a very large national agenda that's been put together. We simplify it in terms of saying that there are six things that we have to get done in every state: The first being that issue of working with families and having families as partners and having families being satisfied with the services that they are getting. The second one is the issue of access to good quality health care through medical homes so that every child has a medical home in that state. The third is finalizing the insurance issue. Dealing with the underinsured issue and the uninsured issue. Some children aren't insured and some children haven't got adequate insurance, that's the third thing we need to get done. The fourth activity is related to early and continuous screening. If we had every child in health care and they've got good insurance, if you're working with families then you can do early and continuous assessments. Make sure you're picking up children very early and getting the treatments they need. The fifth performance requirement is for communities, organizing services at the community level. You'll never make sense of the federal and state governments and all the programs at that level. You can work together, but where it really needs to come together is neighborhoods and communities. That's where the docs and the schools and the day care centers and the Head Start and the families really need to be working together so that's the fifth. The sixth is actually, if we do the other five very well, is the transition to adult health services. The children will be healthy and ready to learn to move into independence, employment, adult health care. That is the agenda that is being pursued in this country and it is to be done by the year 2010. And that's what's referred to as the 2010 agenda. Six simple things to be put into place in every state.
Video: Dolores Orfanakis
Transcript: In the state of Oregon we did our initial feasibility study and designed this wonderful ideal legislation that had hospital testing, tracking, reporting and intervention and “M” the money word. What came out of the legislature was…um, not quite that! What I frequently call the "less then ideal legislation" which was simply mandated hospital testing. It did not address funding and had no dollars with it. But in the interim four years we were able to get HRSA grants and CDC grants. What I'm learning more and more, even from today's and yesterday's conference, is that there is money out there, you just have to find it. And particularly in today's budgetary climate it probably may be hard to get from your states, but you may find it from other sources. By being resourceful we can get these programs going by taking a step at a time.
Speaker: Betty Vohr
Transcript: We are the smallest state in the nation but we are often the first. We were the first to accomplish universal newborn hearing screening and it came about by real serendipity. I think we were in the right place at the right time. Let me just share a little bit about that with you. Dr. Tom Behrens at that time, this was 1988-'89, was in the Department of Education and they were looking for states in which they could have a demonstration project to see if universal newborn hearing screening was in fact feasible. In Rhode Island we had started in the late 1980's screening children in the neonatal intensive care unit. I'm in the department of neonatology. We were identifying kids with risk factors. We had nurse practitioners doing the screening. So they looked at our state mainly because of our small population and we were already screening in our neonatal intensive care units. We were very, very fortunate to be one of the two states funded, Hawaii and Rhode Island, to work with Dr. Karl White's on this demonstration project. This really started slowly and gradually gained momentum so that we then were a part of this NIH consensus conference which recommended the identification of all infants with hearing loss. This then paved the way for us to have legislation passed in our state which became effective in July of 1993 for universal newborn hearing screening. We were on a roll at that time because we had the benefit of the demonstration project, we had equipment and we were able to expand to all of the hospital in our state.
Speaker: Betty Vohr
Transcript: We've discovered that there is so much work to do because it's not just the screeningthat's the first step. But it's the whole system which we now call EHDI (Early Hearing Detection and Intervention) so we still had a tremendous amount of work to do which we are still working on in Rhode Island. We have already seen the benefits reaped by early hearing screening. We have four times as many children with hearing loss in our early intervention program who are getting services. The mean age of identification in Rhode Island is two months of age. We're very excited about that. Essentially all of our children are getting services prior to six months of age.
Speaker: Karl White
Transcript: There's a lot of work left to be done. It's not just a matter of screening babies. What we've really learned in the last decade is that screening is the easy part. The challenge is making sure that those babies who are referred from hearing screening programs are connected with appropriate diagnostic programs, that they are linked to appropriate early intervention programs and that those things happen very, very quickly. We really need to be making sure that these babies are getting the services that they need by the time they are a month old. It shouldn't have to wait until they are six months or twelve months old. We know how to do that now; but there are just not enough people who are really aware of the capability which is out there to have it happen for all babies yet. This represents a real change in how we provide this type of health care to babies and it's going to take a while to implement that and to make it effective.
Speaker: Randi Winston
Transcript: The work that I've done mostly is in Arizona and is with the forty-four hospitals, working with them to implement newborn hearing screening practices into their hospital- based programs. We don't have a mandate in our state so we've been very fortunate to see this huge progression since 1996 with going from about 7% to 100% of all births being screened in Arizona.