REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"The Melding Pot: Strengthening EHDI Stakeholder Partnerships 
By the Blending of Parent and Professional Data"
Room:  Vienna
Monday, March 4, 2019
11:15 ‑ 11:40 a.m. CT

REMOTE CART CAPTIONING PROVIDED BY:
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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings.

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>> Hello, everyone, my name is Allison and I am your room monitor today and I'm going to present your presenters about the melding pot, strengthening partnerships by the blending of parent and professional data.
Before you leave today, make sure you fill out the evaluation form.
Thank you so much, I'll let the presenters take over.  
>> A quick question on the evaluation form, do we do the top part first?  
>> Yes, and when you're done, turn it in to the room monitor at the end.  
>> All right.  Hi!  Welcome.  My name is Amanda Hvass, I am with Hands & Voices of Oregon and I am your on‑site coordinator and I'm here to share with these lovely ladies, about the melding pod ‑‑ melding pod? ‑‑ melding pot, trying to pair together stories and data, professionals and parents and how to effectively do that.  
>> Hi, my name is Beth Jones, I'm the program coordinator for Nevada Hands & Voices and I'm the mom of three children, two of whom are hard of hearing.  
>> And.... okay.  And I'm Christine Griffin and I am the Guide By Your Side coordinator with Washington Hands & Voices and I just wanted to say that this presentation is really response to a question that was asked on a webinar that I thought, why don't we try answering that from our parent perspective?  
>> So to start with, we wanted to ask a few questions of our participants.
So, if you could raise your hand if you are a parent in the room?
Great.  I was meeting people yesterday and especially people new at the conference and we were introducing ourselves and there were a lot of professionals and a lot of ‑‑ you know, I'm a doctor of this, I'm a doctor of that, and a lot of the parents would introduce themselves and say "I'm just a parent," which I don't want anybody to feel that.
Again, I'm going to ask again, if you are a parent, raise your hand, if you are your child's first teacher.
Raise your hand if you are your child's expert, if you are an expert on your child.  Awesome.
All right.  Raise your hand if you're just a professional.  
[Laughter]. 
>> Okay.  Welcome!  We love you too.
And do we have any Deaf adults in the room that are joining us?  Okay, great.
So, regardless of what role you play, we wanted to know, how many of you have experienced being overwhelmed by data in either your personal life or professional life?
I live in Las Vegas and I am overwhelmed by my energy bill every summer when I open it up and I'm, like, there's a lot of data and it's 120 degrees outside.  And I spend a lot of money on air conditioning!  And I'm overwhelmed every time I open it.
How many of you have ever tried to express an idea, only to have the listener listen to you like you have no idea what you're talking about or why you're trying to say that?
Again, my kids in the summer when I say close the door when you go outside and they look at me, like, why?  What's the big deal?  And I say let me show you my energy bill!  This is why.
So basically regardless of what role we play, we all struggle with communication and data and trying to explain things and that's one of the things we're going to look at today in our presentation.
So, the title of our presentation is the melding pot.  And for all intents and purposes I didn't really want to pack a big pot in my suitcase and we have a melding pod, if you will. 
[Laughter]. 
>> There is a lot of information out there for hearing loss and for parents and professionals and where to gather that data.
So we have things, like, everybody, I'm assuming, just came from their state stakeholders' meeting and everybody got graphic handouts how their state is doing, so we can add those to our melding pot, there's a lot of great information out there.
We have things like publications from different organizations like We Are Hands & Voices, stories of families or the book of choice and this one happens to be in Spanish.
Again, lots of data available for our families. 
We have the internet, like Google, we can do searches, we can do ‑‑ look up scientific articles, we can look up why our child was, you know, why were they born deaf?  What did I do?  That was my Google Search every time, what did I do during my pregnancy that caused my child to be hard of hearing?
There's a lot of information, good or bad, that you can find on the internet, as well as social media.  Good or bad, you can find a lot of different data and a lot of different parent stories from people out there.
And then, again, we have other parent stories in things like the Nevada ‑‑ excuse me, the Hands & Voices Communicator that shares data and personal stories from a lot of different people.
So, as we're going through our presentation, if you want to keep some of these forms of data in mind as we explain how we can incorporate that with our EHDI systems.
>> Okay.  So, the purpose of today's presentation, and I'm just going to read this off the screen, is that this presentation will help identify communication gaps and opportunities to enhance confident parent involvement within the EHDI system.  And this is a conversation starter with our EHDI stakeholders today.  Within 25 minutes, we will not be able to answer and solve all the world's problems.
So, and then the objectives today are here.
So, participants will be able to define with examples of the goal eight of the JCIH, which is the Joint Committee on Infant Hearing, which is families will be active participants at the state and local territory.  That's that particular goal.
Also, participants will be able to explore adult learning principles in order to increase parent engagement within the EHDI systems in their state.
And lastly, participants will be able to identify the different types of data, whether that be qualitative or quantitative, in order to integrate that into more of a melding pot.  
>> So, I'm going to talk about how we can answer the question of how do EHDI providers share data with families that we want ‑‑ so we want to identify two different types of data today, and that's qualitative and quantitative data.
Quantitative data is information about quantities, so it's information that can be measured mathematically and written down in numbers.
Some of these examples are things like I showed, like all of the EHDI information, all of the statistics, all of those things that can be measured by numbers, all of that that everyone received from their states today.
So, again, a lot of that stuff is ‑‑ it's been the theory that that's the best way to present this data in that quantitative format.
But there's also qualitative data which is the information about qualities.  Information that typically we felt that cannot be measured, even though we're starting to see research showing that you can measure qualitative data.
Those are things like family stories of their experience and their journey through the 1‑3‑6 benchmarks that EHDI sets.  Those are things that how the families felt when they got their recent diagnosis.
So, again, we see a lot of that kind of data, that qualitative data presented in publications, in things like family stories throughout the nation and local sources.  
>> Okay.  So.... we wanted to share a couple of quick little stories about our initial initiation into the EHDI system.  And my EHDI coordinator is standing in the back, so.... [laughs].... I know, she's hiding now.  Not to call her out, but anyway.....
She's awesome.
So, I remember, it was probably about 2005, I have adult children who are deaf or hard of hearing and I was very intrigued in the idea of late onset or late diagnosis.
And at the hearing screening symposium or meeting, there was going to be a presenter on late onset hearing loss and I was very interested, so I drove myself down to Seattle, which was a couple of hours, and initially that meeting was a lot on sharing the data of the previous year's results.
And I was really quite confused, honestly.  And it wasn't anything in my vernacular, to say.....
And I kept on waiting for that parent piece, like, where is the parents' story?  Where is the intervention piece?  Where is the....?
And it still didn't make much sense to me.
But I casually mentioned that to someone who was sitting next to me in the room and I don't ‑‑ I wish I knew who that person was so I can thank them today, but I just casually mentioned, like, where is that involvement piece for families and early intervention and so that person, very calmly and casually, also responded that, you know, this was a very new program in our state at that time and that we hadn't really got to that point in the development of the program and all of the data tracking and the collaborations that needed to happen.
So, from that simple explanation, it helped me understand that oh, there's a process, there's this overarching understanding of the EHDI system and how it relates.
And so I knew that I needed to be patient and I guess it's been ten ‑‑ well, 17 years since our kid's identification, but.....
So, that was very helpful.  
>> And I had an experience with the EHDI program once I became a "professional" and a parent guide and started working with our state EHDI system and doing loss to follow‑up calls and I guess I had as a professional, these are the terms I need to use and I need to identify myself to families and what I do and who I am.
And I had to call a new family that their child had been screened at the hospital, referred on their hearing test, and we didn't know what happened to them afterwards.
I made a few calls, left a few messages, explaining who I was and what I was calling information for, and when I finally got ahold of them, she was very, very distraught, she was, like, why do people keep calling me?  And I said I'm sorry, I'm the only one that would be reaching out to you for this, and I said, you know, do you know who else has been calling?  And she said I don't know, some girl named Eddie. 
[Laughter]. 
>> I said that's me, I'm Beth, I'm EHDI, and looking at that perspective, as a parent and now on the professional side, I knew what EHDI was.  I don't know if I used the acronym, but I must have, because she thought my name was Eddie.
But it was just a very different, looking at that data from she was not answering and we had that ‑‑ we had data that we could not collect because of her, but then listening to the parent's story, she was just annoyed that I kept calling, and once I explained and she understood, then we were able to get some answers, which was very helpful. 
>> I love that story.  It's such a good example of just how lost parents feel at first when they enter in this world of hearing loss.
I was very lost, I had no idea where I would be going and I had no idea the systems in place or how people were calling me.
My son had extra, like, special needs beyond being deaf and so just people would call me and I would enter into the system.
And thankfully where I was at, the system was pretty smooth for entry.
But it's not always the case.  So we learn as we go.  And right now we're just trying to address how do we bridge that gap so families know the value of the EHDI system, as well as families being able to speak into the EHDI system so that they can bring more value to it so it can be more pertinent to families.
So here we have from the JCIH, I believe ‑‑ it should have probably said hearing and not health, right?  Of goal eight? ‑‑ but we have families will be active participants at the state and territory and local levels.
In other goals of the JCIH, there are steps, definitions of a scaffolding but as of this goal, there is not really any ways that have been, like, written out exactly how to actually perform this and get families to be active participants in it.
The farther I get into my journey of this, the more I realize that personal stories and influence that I can have on the EHDI system, but to get to that point is quite a process.
So how do we get those families in right now?
NCHAM came up with a pretty comprehensive list to start with this and one of them was, like, that parents' feedback should be considered by those designing the programs, just building them into systems.  Resources are available for families to obtain, in order to know the knowledge and skills that they need to have in order to participate in this.  And also the knowledge and skills that they will be able to give.
Parents need to know who to talk to.
I called, I called a family last week and I was checking in, how's early intervention going and she was, like, I don't know what that is, but I have an audiologist come to my house all the time, and I was, like, you what?! 
[Laughter]. 
>> You have an audiologist coming to your home all the time?  Like two, four times a month?!
And that doesn't make sense.  So, wait, what does this audiologist look like?  I'm in her region.  Is she tall?  Is this her personality?  Oh, okay, yeah, that's Annie, she's your teacher of the deaf and she comes to your home for early intervention and that's what that is.
So we need to know who is the important people to be talking to in order to get into these systems.
And then lastly ‑‑ sorry, I lost my place ‑‑ these are ‑‑ these are suggestions that NCHAM gave to us as kind of a beginning place on how to promote involvement, and so what we're going to kind of delve into next is adult learning and how parents are going to be receiving this information, how they process that information.
So I'm going to pass it off to Christine for that.  
>> Okay, so each one of these bullet points can really be a presentation all in itself.  I uploaded a hand out that ‑‑ do we have copies for?  
So, if you want a copy of the handout, feel free to get that at the end so we don't impede the other presenters.
So, I wanted to just share that a lot of the experience or parents raising children who are deaf or hard of hearing, they're learning, so I should also say that I have a recent background in adult education, so ‑‑ and I study parents as adult learners, because I was interested.
So a lot of the theories, the adult learning theories, have a lot ‑‑ in connection to families are the experimental ways and these theories can be placed in activities and used as your EHDI systems.
Andragogy is ‑‑ is anybody familiar with that term?  Oh, good!  Oh, you are?  I see one little hand.  
>> [Away from microphone and unable to clearly hear]. 
[Laughter]. 
>> Okay, cool.  Yay, team!
Okay, so how many have heard of pedagogy?  Okay, oh, yes, nods, okay.  So pedagogy really is about teacher being front, students, I am imparting my knowledge onto you.
Andragogy is different in that teacher and learner are mixed; that everybody is equal and teacher is learning from student, student is learning from teacher.  Okay.
So, a lot of the times when we Google "adult learning," this is what comes up.  And so there's some limitations when we're talking about adult education and trying to infuse that into parent engagement.
So, the other things that I think is very vital to parent as adult leaders ‑‑ or, excuse me, parents as leaders are self‑directed learning.
There is no higher education program that you can go to that says okay, I'm going to get a master's in parent leadership.  There's nothing.  It's all parent or self‑directed, right?
So, we have to be able to know where to find information, and we are only as good as the information that we find.
Which brings me to the next step, which is the technology.
So, when I started going back to school, [Sighs].... there were no Scantrons. 
[Laughter]. 
>> It was all online and that's the same for parents.  Parents may not have the technology at home to be engaged, to be able to partner with professionals, so we need to be thinking about that, how can we make that happen?
And I am not a digital native, so it's very difficult to understand some of the platforms and terminology.  I'm always messing that up.
So, and then lastly critical thinking and culture and context.  Super, super important, because in this day and age, our communities are in flux and we're all transforming, so, in fact, the learning theory that we need to be addressing is transformational learning theory, not adult learning, because we're all changing.
And I also wanted to just add quickly that there was a comment about the grief cycle.  And while some families are grieving, we may be doing that transformational learning.
Anybody here had to learn something that they had absolutely no knowledge, but there's high stakes?  There's a lot of stress, yes, a lot of stress happens.
And we come away with a different view.  That's transformational.  
>> Okay.  So recognizing the gaps.  We've touched on a lot of these, but oftentimes parents don't have a good understanding of the system, sometimes the connection is to the person, not the organization.  So then when the person leaves, they're a bit lost, they don't even know what the organization was.
Presentation of data is confusing.  I sometimes, as a parent still, my child is 9‑years‑old now, I sit in the EHDI Advisory meetings and scratch my head on the data presented to me, where can I ask more questions?
And sometimes parents don't understand professional language, acronyms, and jargon.  When Christine said she was going to talk about andragogy, I thought I might be the only one that doesn't know what that word is, but just in case there are any others [laughs], I'm going to ask.
Recognizing those gaps, current melding practices right now, EHDI and HRSA have worked really hard to have parent involvement and so they're building strong leaders, there are Guide By Your Side programs connecting with EHDI programs, parents are sitting on EHDI Advisory Teams.  These are all very great beginning places for there to be that melding pot happening.
Are there any other things that come to mind right now for that melding to happen that anybody wants to speak up about?  Yes?  
>> [Away from microphone and unable to clearly hear]. 
>> Oh, yes, parents involved in professional learning.
Was that SPoC?  There's shared plans ‑‑ that's another one, shared plans of care where parents are sitting down with audiologists, doctors, their EHDI coordinator, sitting down at the table together.
So with three ‑‑ yes, another?  
>> [Away from microphone and unable to clearly hear]. 
>> Parents as EHDI staff, yes.  I didn't know that until yesterday, yep.
Any others?
[No response]. 
>> Okay.  So, with three of us here, we're going to share, in Oregon one of the things that we're seeing that we've experienced is with all of this data, our early intervention, we're working on building those numbers so that more parents are getting into there sooner, and sometimes with a parent guide, we're able to identify why people are not getting in there and when we see our numbers lower than we want to be, sometimes the parent guide can stand up and say that family is waiting for hearing aids and then they're going to move out of state, and that's why they're not in your EHDI system right now. 
>> In Nevada, when I share data with other families or my Guide By Your Side team or even my board members, I do use a lot of the data presented from our EHDI system.
And it's very easy in you have a background to say this is where we're at, this is where ‑‑ this is how we meet or exceed national benchmarks for things.
But I feel like that doesn't really share the whole picture.  So when I show pictures of children, a lot of people are, like, oh, they're cute, those are cute hearing aids, but when you really look in the depth of it, this is something that Nevada works with the early intervention program and these are all kids that were enrolled in EI before six months and we met that benchmark, these are kids being exposed to new languages and other experiences, these are parents connecting with other parents, these are professionals providing new resources to these parents here.
So when you put these two types of data together, I think you can really see that the deeper impact of oh, we made a benchmark by enrolling kids by six month early intervention.
>> So very quickly, I just wanted to say that our state did a gap analysis and from that gap analysis and the collaboration that happened between, collecting data that was both qualitative and quantitative, we've seen an increase in parent referrals, increase in events and workshops, and increase in collaborations with others, and this photo is a picture of a visual that we collected when we did a community café event, so it's another way of using data that's shared in a qualitative form visually.
Okay.  So we have a couple of resources that we thought of mentioning.  We're really short on time, so we're trying to hurry here.
I reached out to a colleague and she has ‑‑ she does a lot of work in the science field, and she attendance many presentations that are, I'd say, a little on the dry side, and she agrees, so she's put together some tips of how presenters can present more quantitative information.
The two that we thought applied to today are tell stories using large images to engage audiences and tell stories, and then create simple slides that are ‑‑ that contain data.
And then last year, you know, I've always had a hard time of participating groups knowing what to do and what to say and when, and so I took a leading by convening group, that's part of the, oh, goodness, the serving on groups curriculum, and there are nine modules, there's Spanish and English, and you can download these.
They were really, really informative and very simple to understand.
And then to conclude, we have gone over the different types of data, both qualitative and quantitative.  We have described goal eight.
And perhaps just offering ideas of how to enhance parent leadership and parent engagement in that particular goal.
And then we explain some adult learning theories that would pertain to those activities.
And we have references.
And, thank you.
Again, we have the handouts that we will have, like, outside the room, so we don't have a bottleneck effect.
Thank you so much!
I don't know, do we have time for questions?  I'm looking at my ‑‑ 
>> One minute, two minutes, and then we're done, and then we have the next presentation. 
>> Okay.  I want to remind people of the surveys, okay.
Any questions?
[No response]. 
>> Okay.  Thank you so much!  
[Applause].
[End of session].  

** Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings. **