ROUGHLY EDITED COPY
EHDI – Grand Hall B
Addressing Loss to Follow-up Among Large States Through Collaboration
Casey Judd
February 28, 2017
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> Just a short announcement, this isn't the session that was listed in the program. This one is entitled what's on the sign out there. Something like a conversation with federal officials about support for EHDI programs or something. If that's not what you're expecting, you're in the wrong room. That's like, when you get on the plane and they say "if you're not going to Atlanta, now's a good time to get off." We'll start in a few minutes. Looks like there's a glitch with the interpreters, we'll see if I can solve that.
> [Speaker off mic].
> So my name's Karl White. I'm the director of NCHAM. I'm not a federal official, but, but I like federal officials. At least these particular federal officials. And so...because of the other session not being able to be held today, we had some extra time. I talked with Marcus and Sadie and they thought this might be a great opportunity to provide more of a conversation hour than a presentation. And it's only a 30 minute session, but to, so, to my immediate right is [indiscernible] Brown. The division chief and branch chief in the integrated services branch. To my right are Sadie and Michelle. We have Marcus Gaffney who is the team lead for the EHDI team at the Centers for Disease Control and Prevention.
So...when I asked them if they'd be willing to engage in this sort of conversation time, they said they'd be happy to, except to make it very clear that there is an open, there are open funding opportunity announcements right now. If you have questions, they are off limits, they don't want you to ask those questions. That's just federal policy, when there are open funding opportunities that they need to make sure the same thing is said to everybody and since everybody's not here, they just can't comment on that.
But...they'll talk just for a few minutes each about you know, what the federal role is in supporting EHDI programs, but what we really hope will happen is that there'll be questions and discussion among them and the group. So, we hope you will speak up and we'll have a lively conversation. I'm not sure who's going first but we'll make sure this mic works.
> Hi, I'm Trebe Brown [phonetic]. I'm in the Division of Services for Children with Special Needs. In the integrated services branch are several programs for children with special Health Care needs and the newborn hearing screening program is one of them.
I do want to emphasize what Carl said. This is really a listening session, so...I don't know how much new information you're going to get, but we are always anxious to hear from our grantees and even if we can't answer questions here, we will certainly take those back and try to answer them when we do have good information.
And so, I will pass it to Michelle and Sadie who will just talk about what their roles are in MCHB Eddie work.
> I'm Michelle Copeland. I'm on the newborn hearing screening team. Working with Sadie. I've been in this position for just about a year now. Last year was my first EHDI conference in this role as federal project officer for this program. I oversee about 20 of the state grants within my portfolio, I also work with audiology, training, audiology supplements and their trainees for the LEND Program. Operated out of the Maternal and Child Health workforce division within our Maternal and Child Health Bureau. We do a collaborative partnership effort there in terms of supporting the system and making sure the workforce is developed. We provide a supplement to the American medical genetics. American Colleges and Medical Genetics site. That's a project that's underway right now. And then, I'm also the program lead for the family leadership in language and learning program. That's a new collaborative agreement that Hands & Voices will be starting in April. So, that's a three year program and...I'll be working very closely with Hands & Voices over the next three years on that project. So...I'm very excited to be working with them and to be working with all of the state programs.
> Hello, I'm Sadie and oversee the newborn hearing screening program. I have 20 grants in my portfolio and I also work with the National Technical Resource Center. NCHAM. I oversee a medical home implementation project with the American Academy of Pediatrics. And that's led by Michelle Esquibo [phonetic].
> My acting branch chief is in the back. And some members of the EHDI team in this session. Appreciate the opportunity to speak. For those who don't know, a lot of CDC's work and what EHDI revolves around is the data piece. Any information systems, the overall purpose behind these systems is to help give states a tool they can use to make sure kids are actually getting services. I say services, obviously screening, diagnostic testing and intervention and to make sure they get services and to get a document that actually happens. It's a tool to make sure kids are getting services and to be able to report out on that progress and use those systems to see what's working well, what are some continued areas for engagement and things like that. We've been supporting these systems in various ways for several years now. I'm very excited to say that every state and territory now has at least some type of EHDI information system. The capabilities definitely vary and the design of them and you know, the types of data in them, they vary, but there is at least a basic system in each place and...you know, I think that's, you know, really is quite an accomplishment. That's down to a lot of work that's being done in states and territories over the years, but again, a lot of our work is around this data piece and a lot of where we, so, as we look towards the future, helping to get those systems to be as good as they can. To really be a useful resource for programs and to getting the data to be as highest quality as possible. It's actually useable.
I probably sound like a broken record, but one of the things we focus on is not just collecting data for data's sake, it's actually being used on a regular basis. It's not just being collected because CDC has these data items on the survey. They do every year. It's not the, not really the end goal there. That's kind of a few guidelines from me.
> Other questions or comments from the audience? I'll be the mic runner if people have questions or things they'd like to say.
> I was wondering if you could give us an update on the status of the newborn hearing screening act?
> An update on the status, I'd be happy to comment unless one of you would like tomorrow or we all can. So...the legislation that authorizes the funding for both CDC and HRSA is, has lapsed. And...there was new legislation introduced by Congressman Guthrie from Kentucky and Congressman Caps from California in the last session. It passed the house, there was parallel identical legislation introduced in the Senate by Senator Portman from Ohio and Senator Gilcrest from New York. Most of us watching that thought it would pass this time. It was bi partisan legislation, there was no active opposition to it, but it just ran out of time as sometimes happens. The way Congress works, if you don't get it through during the session, then you have to start over and so...it, we are told that it will be reintroduced very soon, Senator Portman from Ohio is doing it. It's similar to what it was before. Minor wording changes. What I've been told is that Senator Tim Kaine from Virginia will be the cosponsor on the democratic side. In the house, Congressman Guthrie will be introducing it. It'll be element identical in the two versions, at least when they're first introduced. They could be amended in each chamber in different ways and Lois Capps has retired from Congress and Congressman Matsui will be the democratic lead on it. It's moving forward, we'll see what happens. Other questions?
The EHDI program has often been cited as a great example of intergovernmental cooperation or interagency cooperation between CDC and HRSA and NIH and Department of Ed. Would any of you comment on how that happened? Why it's important? What you see as potential opportunities in the future and how that might set a model for state programs? I thought it would reach, it's not going to.
> I'd like to say a few comments. I've been fortunate to be involved in EHDI for a number of years now. Even from the beginning, we've always just had open communication being key to that. We had that from the beginning. Especially between HRSA and CDC. I think everybody that's been involved has shared a passion and clear goal of wanting to do what's best for the populations that we're supporting. It all comes down to communication. That sounds very simple. I think it is communication, I think very sort of, open, exchange of ideas. We've had a lot of interaction, you know, with HRSA, with NIH, you know, with NCHAM. Even when we were putting together the first CDC survey. We had a lot of discussion with our partners around that to see the information we're collecting. It'll be useful to HRSA and NIH. I think that was one example. I think communication seems to be the core of that.
> I think I would agree with Marcus in that communication is key. I know that when I first started, what these like, quite some time ago, CDC was always willing to have a conversation with me. So was NCHAM. I had many questions. There are days when I still have a lot of questions, I can pick up the phone and say "I don't understand how this is working, are you open to hearing XYZ?" I don't always get a yes, but he is always willing to have that conversation with me. We have regular calls, I think they're monthly. But...even outside of the those calls, we call each other pretty frequently. To discuss various topics. We have a federal partners work group. That includes the three agency, three agency being NIH, CDC and HRSA. We had what I thought was a very productive meeting in the fall and...what stemmed from that meeting is a willingness to collaborate more and communicate more as we are all intertwined and I think we all have the same goal.
> Other questions? Comments?
> So, I've done a listening session with my early childhood systems grantees in the past. One question we had asked was what would an ideal system look like for you? At the state level, what I think you wish you had or that the federal government could provide more advice or guidance on.
> Hi, I'm Sandy from Arizona. I've been involved with EHDI for about ten years. I loved hearing that you said communication was key in partnerships and both the grants, that's really important but...it doesn't translate very well in Arizona. So...title five is held in a Bureau across the street that works in a silo, that talks to us once a year to ask us to contribute narrative and then, we're in the Bureau of the state lab where everybody is really into the scientific metabolic, what the point of care tests are like the afterthought. So we, money question is, that's great, but...if it doesn't translate well to the state, which is doesn't in our state right now. You have a few people championing the cause of all of us working together. It doesn't work very well in reality. That's just our truth. Now, I'd love to be able to say we sit and wonder for ten years, wouldn't point of care tests be better? I don't know if you've heard that from other states, but the reality is, they're very separate and particularly now, I'll throw it out there, Sadie, this sort of unprecedented opening the HRSA to other outside agencies beyond public health has caused a huge problem for us. Anybody else having that as an experience?
> That's a problem in Alabama, we don't have outside agencies as much. Everybody is set up individually. EI services, the block four blocks, they do their own thing. I agree communication is what we need to do, but it's hard to set it up in the format that we currently have.
> Kathy, were you about to say something? Did I see
> Yeah....
> Which Kathy? Me?
[laughter]
> No
> There are two Kathy's in this world. My question is really about communication and how can we expect states to work through the HIPAA FERPA conflict with EI when it's not even being done on a national level and it seems like it's being left to states to do that. But we certainly haven't been able to solve that problem.
> Any advice about solving HIPAA FERPA communication issues? I promised you some soft balls, right? Easy answer.
> That's a great issue, a great question that we will certainly take back, certainly aware of that. And...I guess, following up with Michelle said, as we think about the new grant round if there are areas where you specifically need technical assistance, we're very open to hearing that. So....
> I really appreciate the easy question, by the way. It's nice to get the straightforward question like that. I have a two part remark. One, you're on point. It is an issue at the federal level. We've had limited success. One of the things we're doing at the federal level, this isn't meant to be a magic bullet or quick answer. What do the outcomes look like? We've been trying to support various projects and activities around that. So, at least we hope it'll provide a little more evidence and little more talking points when we're trying to engage about, why is it so important to make sure these kids are actually getting into intervention? And we have to get information back. We're hoping to, in the near future, to have a little more information about that to actually show that. I don't mean that will come across as a magic bullet. It's not at CDC, we've been fortunate. We do spend quite a bit of time thinking about how can we go about this and try different things? Unfortunately some are not always as successful as we hope, but we do keep looking at different things. Not an answer, but that's just kind of, at least how I see it and you know...where things are from what I see.
> I have a follow up.
> Thank you.
> I knew you'd be excited
> You get her involved and then whoa!
> You asked for it. No...I think when you talked about the EHDI legislation, what it's going to take to get hope exchange of information between EHDI and EI is legislation. Is it possible that we, in, take this opportunity to, where we're reintroducing the EHDI legislation to include some requirement about that communication with EI? That would be my dream, if you're interested.
> I think they're very interesting in hearing your comments, but federal officials commenting on legislation is another one of those out of bounds topics. So, they're all taking careful notes though, I can see. Other questions or comments? Janet?
> I think sometimes, when an FOA comes out, I'm particularly thinking of the state based EHDI grants, there's sometimes parts of FOAs that will be particular and little more open to interpretation. As applications come into you and are approved, an example of that would be functional and financial support to family based organizations. How do you provide technical assistance to states about what is and what isn't acceptable? What is and what isn't acceptable in terms of either the definition of it or how they've applied it? Does that make sense? Do you want me to keep going? Okay...never have a problem with that. Let me keep unfolding that a little bit.
So...maybe it feels really clear in the FOA that say 25% of the funding would need to go to a family based organization. And that...maybe a state would apply for funding that they would interpret that as, it will support parents at the end, but it doesn't really technically support a family based organization. Would that be acceptable or not? Do you....
> I'm guessing you probably crossed the line over commenting on an open FOA. So....
> Oh an open FOA in terms of not having been awarded yet. Okay, I'm sorry, yeah....
> And then, so...they, they may be able to comment on, in general, how do federal agencies interpret definitional issues in the, in the implementation of grants.
> Yes. So maybe...yeah, the broad sense.
> But I'm guessing their comments would have to be so general that they may not be helpful.
> I was thinking of application deadlines. I was thinking that was closed. Thanks.
> I have a question that I don't think crosses the line but...for the last three years, states have focused a great deal on quality improvement. Quality improvement is mentioned some, but not nearly as much in the future applications. As a program, do you continue to see quality improvement as being an important methodology that states should continue to do as they address other issues that come up in the future?
> Short answer to that would be yes, definitely. The longer answer would be that we definitely see quality improvement as a methodology that is very important. And crucial, if you will. We recognize the hard work that has been done throughout the past few years. Our last FOA was, for the most part, heavily involved within quality, with quality improvement methodology and we don't want to lose the immense groundwork that has been established. We feel we have set the foundation for that and our intention is to continue to build upon the foundation.
> Here's an interesting question. Carla from Washington.
> Regarding the HRSA grant, the FOA, we were a little surprised in Washington to see how prescriptive it was. Because...like for example, the learning community seemed very specific to an, as a way to educate providers. I think educating providers is really important. There's ways to do it, but it seems very prescriptive to require learning communities and require you know, 20% funding for family organizations at which time, but...it did seem more prescriptive. So I guess one thing; I was curious to know how that got worked into the FOA. If there were reasons behind that and also, it's nice to know there'll be technical support and possibly around helping states perform the learning communities because...we were very specific about what we were going to do. It was very provider education. It seemed like a lot.
> I think, you stop me, you're the panel, but commenting on how it got there is probably not possible when that's an open FOA, but I think that's great feedback to people in the federal agencies, it seemed very prescriptive. I think it's probably not appropriate here to talk about how that FOA was developed.
> Yeah....
> Assistance in some of those aspects that were very prescriptive to help guide states would be awesome.
> Super feedback. Other questions? Here's one right beside you, Allison, turn.
> Hello, I'm Heather from Oregon. As grants are becoming more competitive, I'm wondering if there's an environment when you're thinking about the scoring criteria to take into consideration state's existing resources to support the ongoing work of EHDI. We may have positive political environments in other ways, but not in terms of securing stable funding to do this work. And programs are at risk. As federal funding is reduced or eliminated or becomes competitive, potentially. I was hoping you could comment on that.
> Is that okay? As I understand the question, Heather, in the future, not on this current open grant, but in the future, is there a mechanism to provide credit to existing organizations about resources and activities, experience, that they've established as part of the rating system?
> I can't really give a response to that, but I think that, that's certainly feedback we can take back. That's helpful feedback to us.
> I'd just like to comment from a nonfederal perspective. I think, I don't really remember the rating system in the current FOA, but in many FOAs I've seen over the years, there's a section on offerer, experience, and capability. There are points assigned to it, it kind of dresses the question you're asking. So, maybe you would argue it's not enough weight. And...I, I, my experience over the years is that federal officials are often, are very happy, not often, always happy to hear feedback from the field. They often aren't able to respond to that feedback directly, but to say I think this ought to be weighted, instead of giving 40% of the weight to the work plan, I think you oughta give 10% of the weight and 40% to experience. That would be feedback that, I, I, I think we often don't give as much feedback to the federal officials about what's happening in the field as we probably ought to. That doesn't mean they're going to jump and do everything we ask for, but....
> Just to further clarify, I'm talking about financial resources, stable, secure, state funding.
> Good point, different issue. That's...they're not in their heads, but they'll think about that. Okay...we're out of time, so...Marsha finally had a question. So...we would invite Marsha to come up afterwards and talk with the people on the panel. And if nothing else from this session, I hope you'll all walk away saying those people really do want to hear our opinions and our questions and you'll all take advantage. You have their e mail addresses. You can use the app and send it to them. So...please fill out your evaluations, thank you for coming.