REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"It's Better When We're Together: Medical, Family, 
And Educational Collaboration For Improved EHDI Outcomes"
Room:  Vienna
Monday, March 4, 2019
3:35 ‑ 4:05 p.m. CT

REMOTE CART CAPTIONING PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
www.captionfamily.com

* * * * *

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.

* * * * * 

>> HANNAH ESKRIDGE: Okay, good afternoon, I think we will get started.  My name is Hannah Eskridge and I am a speech‑language pathologist and a listening and spoken language specialist and I work at UNC and this particular talk is based on the state of North Carolina and how we are coming together both in terms of our medical teams, our EHDI teams, our educational groups, to improve EHDI outcomes.
And I really don't intend this in any way to be for me to stand up here and talk to you for the next 20 minutes, because I don't find that to be necessarily completely helpful for you to takeaway and do something back where you are, I'm just going to talk a little bit about what we're doing in North Carolina, but I want this to be more about you maybe thinking a little bit about your own state and your own role in your state and where might be some collaborative partners for you, and we'll do some brainstorming and team work together.
If you're not currently sitting next to someone you can talk to, at some point we're going to maybe kind of pair up or group up a little bit, so just keep that in mind.
So as UNC, our mission is part of the Department of Otolaryngology and involves kind of three aspects:  Patient care, education, and resource, and the goal to maximize hearing access for the maximum potential but we know as a program we cannot do that alone, we're one program in the middle‑ish east part of our state and there are children that live throughout our entire state and even surrounding states and we know that we can't really meet our mission alone, and that to try to do so would be kind of futile, so we know the importance of trying to collaborate with others.
So the first question is, why identify collaborative partners?  I think if you don't ask yourself why in everything that you're doing, then you might kind of lose focus of what's really important.
So, in thinking about a large implant center, what's the reason behind why we would want to identify collaborative partners in our state?
And as I mentioned, one reason is we don't feel we can serve them the best if we do it alone, but there are other reasons as well.
So, if we look at just in terms of outcomes for children that are diagnosed within our own hospital system and those that are diagnosed outside of UNC, so Lisa Park pulled these numbers that children that are diagnosed with their hearing loss in UNC versus outside of UNC, there's an impact on age of implantation, so we know if we only kind of think internally about our own kids and we're not collaborating with the community, we have kind of an area here we see that we can improve things, because we know that kids are not getting to us for implant as fast when they're not diagnosed at UNC.
And one reason we want to collaborate is to have earlier cochlear implantation and going along with that, no surprise to anyone here, therefore children that are diagnosed outside of our facility with a degree of hearing loss come in for cochlear implantation, they're later to get implanted and their language scores are also lower, so we also want to collaborate to improve our language outcomes for our kids.
I think one of our primary reasons is really what we hear from our parents and our families.
We in 2017, we had a small grant to have a parent task force and over the course of 2017, this group of parents and staff met together to look at what kinds of opportunities we might have to better serve the children that we work with.
Erin Thompson, one of my colleagues, will be presenting on this tomorrow and she shared about it last year and will share updates what we've been doing as a parent task force, but from this task force, we got a lot of feedback that parents were very confused before diagnosis of who all the different players were and who they needed to communicate with, who was trying to communicate with them, and oftentimes felt overwhelming at different people trying to work with them and had a desire that we were all working better together.
We heard that parent feedback and we wanted to take that in to improve collaboration.
So, when we look at who are our collaborative partners, well, within a state, if you're serving children who are deaf or hard of hearing, there are many, many collaborative partners.
But we kind of have identified a few in particular that we'll look at in the course of today's conversation.
And we really asked ourselves these questions.  So these are five questions that we wanted to look at when we thought about who are the collaborative partners in our state.
Now, in saying this, I will say also for many of our children there are things like housing resources, food resources, things of those nature that I'm not including here, but those are obviously also things that many of our families might need and would be opportunities for us at UNC to pursue in the future and we haven't currently reached out to those kind of partners.
To identify our critical partners, we asked ourselves these questions:
Who are provider the services for children who are deaf and hard‑of‑hearing in our state?  We looked at different agencies, looking specifically from birth to three, and who is providing those services and based on where they live.
Who will interact with the family on their journey, thinking about from referral to diagnosis to intervention, so wanting to make sure along those kind of points, where were our families and children interacting with different agencies.
So we might want to collaborate with.
What other partners could come along, families to provide additional support.  So where were some areas that might be agencies that we saw could do a better job or is job together in supporting our families.
What partners are really needed for that big picture what you're hoping for in your state, and what were any kind of hold‑ups in the system to meet 1‑3‑6 guidelines and what role could your program, your role in early intervention and EHDI system play in order to make improvements where those holdups were and that's what we looked at in collaborative partners and from that, UNC looked in the home in treating the child in terms of their hearing loss, we also knew we wanted to partner with our state EHDI system for the children, once they turn three, the DPI, the early intervention program which in North Carolina has a long name, I think the name is longer than that, but Beginnings, which many of you in this room may have heard of in other types of aspects, that's a parent support program in the state of North Carolina, and the CARE Project which they're presenting in another room at the moment, but also another kind of means of family support that does retreats for families.
So we knew these were all agencies in our state that we wanted to collaborate with.
So, we're going to get to the little handout that you have in a minute and kind of thinking about your collaborative partners in your state.
As we go through these next slides before we do some brainstorming in your own state, though, answer some of those questions for yourself to have a couple of those places in mind for what might be some ways that you might be able to partner together.
So, we've talked about why we collaborate.  We've talked about who we're collaborating with.
So how do we collaborate?  So I think a lot of times when we think of partnerships or different types of ways to make goals, you know, people are big fans of the SWOT model, they want to look at strengths, weaknesses, opportunities, and threats and there is a big advantage of doing that.
I think that in the thought process of collaborating, especially in terms of different who are deaf or hard of hearing and trying to reach better outcomes related to EHDI is this asset‑based community development is a better way to think about things.
So asset‑based community development really looks at the resources within a local community.  So if you think about you have your state that's a community, and whatever role you might be playing and other things, and the ABCD model is in contrast to the needs model and looks at what kind of gifts, assets, talents, and resources are already available?
A lot of times it's easy to focus on where we have need, and if we do that, it's hard to overcome or feel like we have ideas towards what those needs are but when we look at what the gifts and strengths are in the community, we can come up with ways to utilize those together.
So asset‑based community development and along with appreciative inquiry and that looks at what's going well and asks questions like what do we do well?  What do they do well?  What could we do together as partners?  What questions should we be asking about improving healthcare and education in our state?  There are lots of things out there about ABCD and thinking how to collaborate with others, if that's an interest of yours, I would encourage looking at those things.
So the next few slides I'm just going to show you a few things we've done in the past year/few months in terms of collaborating with other agencies in our state, not to say hey, look at this as a great idea, do this, but maybe to spark some ideas where you are in your role in your state.
So, one of the things that we did was related to parent education and from our parent task force, we heard a lot from families related to who contacts them after diagnosis?
So a child born ‑‑ a child identified with a hearing loss in the state of North Carolina, they are referred to three different agencies that will contact them following the diagnosis, so they're referred to the CDSA, our part C provider in the state of North Carolina, then they're also referred to sensory support which I mentioned earlier which is the teacher of the deaf that will come out to their home, and then they're also ‑‑ if they're under three or over three, they're referred to the school system and they're also referred to Beginnings and a parent educator will come out and meet with them and talk about various things to support with the family, and they don't come out on a regular basis.
The families are very confused and they might talk to the Beginnings professional and say yeah, we have early intervention and this person came out one time and come back to UNC for an audiology appointment, yeah, they had early intervention and now the child is seven‑months‑old and haven't established a relationship with the teacher for the deaf and the parents were confused.
The terminology is not always the same, someone might say early intervention and someone else might say teacher for the deaf, and the goal is use the same terminology between agencies and we're careful to use fifth grade language, UNC has all of our materials no higher than fifth grade reading level and this is how it was created to give out to families.
We had a meeting last week and we identified some things we don't like and we'll do a little bit of restructuring so they can write down on the card who that person is and some other development, so it's kind of in process, but that was one thing.
The other thing that we've established in the past year is to communicate directly with EHDI and early intervention regarding once the child has an assigned teacher of the deaf and if those services have begun.
So three releases, once the child is diagnosed, we're able to have this communication, because what we would find again is a family, we would know they were referred, a family might say yes, early intervention called, but the services never were established, so now with the current system that we have, if a child's identified with hearing loss at UNC, if the early intervention system or the part C system has trouble getting in touch with the family, they reach back out to UNC, because a lot of times they might come back to see their audiologist when they haven't yet set up those services and we didn't know they weren't set up, so now we have a constant communication to make sure those services are in place.
We use a co‑treat model at our center, which is a speech pathologist and audiologist sees the child together, children that are birth to three for our audiology appointments.
We do a lot of different things through that co‑treat program, but one of the keys of it in terms of collaboration is prior to and/or after just depending on the day and how it goes will contact the early intervention teacher for the deaf and have appointments on what they're working on, contacting the parents, like to see them appoint them, and see if the audiologist made any changes for the cochlear implant, hearing aids, we'll look at specifically goals that might be next and communicate back with that provider, so we have really quite an open back and forth communication, which is really nice, and we're finding from that early interventionists are starting to call us even before we've seen a child at UNC to say I've got a release, this parent is coming, they said we could talk, these are all the things I want you to know, so we're really getting to know the families before they walk in the door because we've established these relationships.
And then here are just several partner projects that have happened in the last little bit are up and going.
Last weekend, the CARE Project and North Carolina EHDI and along with UNC were able to host the first parent professional collaborative in Greensboro and it was a two‑day conference and there were a wide variety of topics and speakers but it was a really unique kind of conference in its intent was to look a lot how parents and professionals communicate together and it was a great conference, the first one, a great feedback, I think it will be an annual thing but a great way for all of us to collaborate together.
UNC and North Carolina EHDI is looking how to enter data as the cochlear implant team.  There are other places in UNC doing implants and so we want to look at kinds ‑‑ we're doing the majority of them and so we want to look at ways that were inconsistent as ourselves in putting data into our state EHDI program and we found some things, I mean, just really simply things and terminology we were using to describe the implant and if somebody pulled a different type of implant, it was called ten different things and simplifying those things and being able to share it throughout the state as an EHDI program to get our data to be more similar in what we're entering into that system.  So that's been a good collaboration.
The other thing we're really excited about that's not available yet but has been over a year working on, but along with the CARE Project, we are working to develop an app where parents could contact other parents, so I like to call it a dating app, you're trying to find that parent that you're wanting to connect with, so mentor parents, so it could be a whole host of various things and it might be a child who was recently identified with a hearing loss, then they might reach out to a parent who has, you know, a 11 or 12‑year‑old several years down the process, it could be a parent maybe for a while they're receiving services in the state and now the child is about to go to school for the first time and they've already been through the IEP process and that kind of thing, and matching parents together, so that is coming through the CARE Project.
And then the other current project we have going on is in collaboration with EHDI.  EHDI has been putting on some parent leadership training called parents as collaborative leaders and they would host those in kind of one‑day sessions throughout the state.
There are, I think there's eleven modules and parents would kind of get them as they could, they would maybe put some of them together in one day, and because of our patient population is so spread across the state, we really wanted to look at what that would be like if we could do it in an online format so parents could get online at home and go through this training, so we've just started that and we've had two sessions.
One of our parents of one of our kids with cochlear implants, she is a trained PACL structure and she's been doing webinars in the evenings and we have a group of parents going through this process and they are working with the app and they are mentoring after going through this leadership training.
Okay.  So now I want to give you guys an opportunity to talk together.  You should have a handout that looks like this.  If you don't, we have more in the back and we can pass these around.
Maybe you're sitting with somebody from your state, maybe you're not, but be thinking together, I think it's nice to think with a shoulder partner, if you're someone that likes to think individually, you can do that, some people don't like to force work, you're thinking oh my gosh, she wants me to talk to someone else.
Think about what role you play and who might be some collaborative partners.  I'm sure many of you are working with lots of people in your state and think of other things you could be doing, look at the questions, what are the gifts, assets, talents, resources we have in our community and you're thinking about what's already there and how to organize and link together.
I think it's always nice to identify in something like this, if you're like me I'll go to a conference and hear a talk and say that's a great idea, I want to do something and I get back home and I've completely forgotten it and get back to my normal work.
So I like a to‑do list, I'm very list oriented, so I gave a little spot here where you might brainstorm and even something that might be a first and next kind of steps, so a step within the next two weeks might be if there's someone in your state you don't collaborate with but you'd really like to, maybe it's I'll send him an e‑mail and maybe we can have a phone call, and that parent app, we've been working on it for a year and it's still not ready, sometimes things take time, but there are specific goals.
Maybe if we could brainstorm.... I can't remember what time I'm supposed to.... what time is this over?  
[Pause]. 
>> HANNAH ESKRIDGE:  At 4:05.  So let's brainstorm together for about eight minutes and we'll see if anybody has some great ideas to share with the group.  
[Room chatter].  
>> HANNAH ESKRIDGE:  Well, I'm excited to hear all the chatter, you may be talking about what you're going to do tonight, I don't know.
Sounds like you're coming up with some great ideas.
Would anybody like to share what they were talking about, a partner they would like to reach out to or an idea they have around that?  Who might be willing to share?  
[Pause].  
>> HANNAH ESKRIDGE:  Okay.  Let me get you a microphone.  
[Pause]. 
>> So one of the challenges of groups working together is being able to, and Christy, what's your last name?  Christy Riley, a mother who has children who are deaf and hard of hearing, right, and a doctor of audiology, who I just met. 
[Laughter]. 
>> But she was talking about, you know, that in forming these partnerships, it's important to have information coming from the different agencies and that there's a lot of disconnect between, like, educational audiology and others throughout the state.
And I think that probably a lot of us all, like, you know, see that, and I was telling her about in Ohio, a bright spot in Ohio is that recently Jorine Mizender (sp) from Cincinnati Children's did put together a project where the Department of Health that is in charge of just screening and diagnosis, okay, then they stop, and we have developmental disabilities that does early intervention, and then the Department of Education, right, so you're tracking all these children throughout all of these departments, they're disconnected, after years and years of trying to make this happen dealing with HIPAA, you know, PHI and all that, that there actually is now a system in Ohio where we can get information across agencies for the same kids.
So I guess my message was it's really hard, it sounds like, but not a totally insurmountable task. 
>> HANNAH ESKRIDGE:  Thank you.  Yeah, these collaborations aren't easy, certainly, and a lot of times there's a lot of ‑‑ even when the people want to collaborate, the agencies want to collaborate, there's other road blocks there, it's not necessarily that the agencies don't want to collaborate with one another, there's a lot of things like HIPAA that can get in the way of that, certainly.
Anyone else have an idea or a hope that they talked about?  
[Pause]. 
>> HANNAH ESKRIDGE:  No one else wants to share, so that's okay.
We were talking about with the UNC folks too, and not to just say in terms of a barrier, but I do think that a lot of times these partnerships can be difficult if trust is an issue.
And so sometimes our steps have a lot to do with building trust.  There might not be a project or a goal initially in mind, but the actual goal may be how do we establish trust between one another and that would be a great workshop I'd like to attend, if any of you would like to put that on next year.
So, yeah, well, thank you very much.  That's it.  
[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. **