REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"The Path to Successful Collaboration Between 
EHDI Systems, Parents, and Professionals"
Room:  Vienna
Monday, March 4, 2019
11:50 a.m. ‑ 12:15 p.m. CT

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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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>> Okay, hi.  My name is Allison, I'll be the room monitor today.  So make sure you fill out that orange evaluation sheet before you leave, and I'll collect them at the end of the presentation; I'll be at the door and collect those sheets.
All righty, so now our presentation will begin.  But ‑‑ involving parents and professionals and the collaboration system.  Thank you.  
>> Hi, welcome to pathway to successful ‑‑ I'm sorry, I can use this one.  You can't hear me?  Is this one not on?  Hello?  Can you ‑‑ 
>> Is that loud?  Now?  
>> Hello?  Can you hear off this one?  Okay?  
>> Hi, welcome to the pathway of successful collaboration between EHDI systems, parents and professionals, I'm Daphne Miller, the Virginia EHDI coordinator. 
>> And I'm Deepali Sanghani, I am the follow‑up coordinator for the Virginia EHDI. 
>> And I am Teri Urban and I am the parent of a deaf daughter and chair of Hands & Voices. 
>> So our objective for today is to provide methods to improve collaboration and communication between state agencies, professionals, parents, in your state.
So let's talk a little bit about the history in Virginia.  Just a few years ago, we had no parents or limited number of parents on our Advisory Committee.
We struggled to get parents engaged and we were not sure how we were going to accomplish this goal.
So we had to be really intentional in our efforts.  So rather than waiting for parents to come to us or come to our Advisory Boards, we were decided we were going to attend their events.
So we talked to parents, we played with kids, we developed relationships, and communicated outside of the normal Advisory Committees.
Then we had a bigger presence at our Advisory Committees than ever.
At some point, we had a waiting list for parents to come tell their stories.
We had to open up the space, because we didn't have enough space for everyone to sit.
So, we celebrate our success, but we also realized that with communication is not the only part to a parent/professional relationship, that we had to continue with collaboration.
So, let's talk about Virginia and our collaboration.  Here are a list of the organizations that we collaborated with, and Teri will talk a little bit more about the events that happened in Virginia a little bit later in the presentation.
So, our communication started out in coffee shops, simply just something that was a little foreign to us, because we're so used to the state agency way of doing things, the formal way of doing things, that we started to do ‑‑ we had to readjust ourselves.  We had to view collaboration in a different way.
So we started asking parents to attend our events with us.  So if we were a vendor at a conference, we would have someone else go with us that was a parent.
We started to do everything with a parent professional idea in mind.
In turn, we had to become flexible as state employees were used to having that flexibility of working from 8:00‑5:00 but a lot of parent‑driven events were on weekend and outside of our normal work hours and we changed our times going to events, we went to events on Saturdays.
We made sure we were aware of events happening in our state and put on our social media pages at the Department of Health and make sure we had some representation.
We understood the collaboration is another effective key to this parent/professional relationship.
How did we increase family involvement in Virginia?  We started by allowing parents to be our partners.  Giving parents the voice and allowing the program to be driven by parent experiences and stories.
We simply started in 2017 with making sure that every Advisory Committee meeting had a family story attached to it or incorporated in the meeting.
We wanted to ensure that we provided an opportunity for parents to share.
This led to an increased number of Advisory Committee members.  In turn, in 2018, this was the first time in Virginia that we had an Advisory Committee that was led by a parent and professional as co‑leaders.
During the AC meetings, we also have a formal work group and it's called Parent Perspectives.  This group has worked to develop text messaging, letters, promotional materials, and has provided us a valuable feedback that we wouldn't get any other way.
This concept of parent professional leaders continues in the EHDI community, learning communities, which is shared by a parent and professional as well.
In May, we will have another opportunity to share some partnership with Hands & Voices to bring the first CARE Project to Virginia.
So the CARE Project, under Johnny Saxton's leadership, stakeholders are excited to get involved with families and we have a concept where we're going to donate things and if people can't give their time, maybe they can give donations, but I think over time, Virginia is excited about as a group parents and professionals coming together to do an event together.  
>> So, in 2016, the Virginia EHDI program collaborated with the Center for Family Involvement at Virginia Commonwealth University to start the 1‑3‑6 family educator project and Irene is small as you can see here and it has been an instrumental part in beginning that project.  She would have loved to have been here today to share in that, but her daughter gave birth to Irene's granddaughter and she gave us permission for her to have her hearing screening done.
>> So, the 1‑3‑6 educator project, each child who is a 1‑3‑6 educator has a child with hearing loss and they all have diverse backgrounds, culturally and geographically, we have a family educator in each region in our state, and they also have diverse communication choices for their child.
So each family educator receives extensive training at least twice a year to be able to provide unbiased support to the families in Virginia.
Some of the activities that the 1‑3‑6 educators do, we'll start with family matching and each family in Virginia that has a child diagnosed with hearing loss, they have the opportunity to connect with one of the family educators if they would like additional support or resources that are available in the state.
And then the 1‑3‑6 educators actually conducted audiology in hospital and site visits for the Virginia EHDI program and they took with them the parent perspective to these professionals to help them understand what the parents are, you know, feeling when they're dealing with these professionals.
And these were both hearing screening professionals, as well as professionals that conduct diagnostic testing.
In 2018, the family educators also conducted audiology outreach for us, so they contacted all of the pediatric audiology facilities that are in our state to just ask them if they're still testing the 0‑3 population, what type of equipment they're using, and this was a way for them to connect these professionals to the Virginia EHDI program if they needed further technical assistance, and just to let us know that these professionals are out there testing these babies.
So, as you can see, in 2018, the number of hospital site visits is a little bit low.  The reason for that is because in the previous years, they had already visited all the other hospitals, and so that's why we shifted the approach to the audiology outreach in 2018.  
>> All right.  So, Virginia Hands & Voices, we are a fairly newly resurrected chapter as of January 2017, so all the information I bring to you is just what we've been working on in the past two years.
You know, one of the biggest successes that we've experienced is really having a partnership with the EHDI team and being invited to the EHDI Advisory Committee.
When I moved to Virginia, I knew that one person and that one person invited me to an EHDI Advisory Committee and Deepali and Daphne and others.
And we work with the EHDI team and there's a local network group, families‑to‑families, the Virginia Department of Deaf‑Blind and Department of Education and what we've done is piggyback on already established events and that's easy for us and we were able to identify a little bit of money from the EHDI team and that went towards reimbursing our board members for events and that was at little to no cost for families and it's important we pick diverse events in diverse regions and supporting education choices.
And some of these pictures up here are from events last year.  The two on the left were when we had partnered with the Virginia Department of Education, one was at a play around Christmas time, another was at a Virginia Air and Space Museum, the one in the middle was an ice cream social in the park and we solicited Ben and Gerry's and they brought ice cream out for free and lots of people came out.
The picture on the bottom we had a tour of an airport and had a tour of the hanger and we had a raffle and one lucky family went up for an airplane ride ‑‑ it wasn't me. 
[Laughter]. 
>> And this picture, I know it's a little dark, that was our first family only member and it was the Richmond Flying Squirrels' minor league baseball park and we were able to rent a little section and offer and invite our members to come for free, so that was really neat.
And then this is a map that I refer to very often, because, like I said, I'm still pretty new to the area, so I think it just really shows how we break Virginia up into certain regions.
You know, what many people don't realize and what I didn't realize is that Virginia is 65% rural, so that is definitely one of our challenges, is reaching families everywhere on a consistent basis.  That's probably one of our biggest challenges.
The majority of, you know, I'm in Central Virginia, I'm outside of Richmond so it's easy to do things in our back yard, but we're always trying to focus on Southwest Virginia that's very rural and our deaf and hard‑of‑hearing kids are pretty isolated out there.
So that kind of goes into this.  Here is a ‑‑ you can't see the top header, but this is for our events in 2018 broken up per region, so, again, Central Virginia is where Richmond is, where we live, where EHDI is, where the majority of our board members are, and a little bit more of our events have been in that central region, but we just kind of look at this as we go forward to say where do we need to go next, where do we need to be more, where do we need to be maybe less. 
That's about it for that one.
And then this is a laundry list of all of our events that we hosted last year in 2018.
I really just wanted to put this up there to highlight the variety, the locations probably won't make sense if you're not familiar with the region, but we do just a variety of different things.
We were asked to present to the Emergency Management System about communicating with deaf and hard‑of‑hearing people, you know, I mentioned the Richmond Flying Squirrels being an exhibiter, ice cream socials, really, a lot of these are piggybacking with already‑established events and agencies.
And I should mention that the EHDI team always does try to make a point to send one of their staff members to our events and so that's great, because, you know, it gives parents an opportunity to talk to the state for, you know, and chances that they may not be able to ask those kind of candid questions.
And this is highlighting 2018, but I want to say that the CARE Project is coming up in 2019, we're really excited about that, it's going to be in May.
Although we have a partnership, the CARE Project is the first thing that Virginia Hands & Voices and the EHDI team is really collaborating on together and we're really, really excited about that.
And so here is a list of ‑‑ this is a ‑‑ [chuckles] ‑‑ again, this is attendance, average attendance per region in 2018.  So as you can see, we have anywhere from 20‑40 people that show up at our events.  I'm happy if it's, like, two families, sometimes it's ten families.
But it's been great, it's been very successful.
I do want to draw attention to the virtual learning opportunities, so that is something that we rolled out in 2018 and it was really successful for us.
We wanted to be able to reach people all over the state and make it as easy as possible for them, so we wanted to provide them resources.
So we did this in the form of teleconference calls where all people needed to do was pick up a phone to be able to access the information.
We partnered for both, we did two last year and both we partnered with the Virginia Department of Education.
The first virtual learning opportunity was focusing on the IEP process and parental rights.  That was a quick 30‑minute call, we wanted to make it short, sweet, leave time for questions at the end, it was very well received.  We received comment from a parent that they would like to see another one that was focusing on specific IEP accommodations for deaf and hard‑of‑hearing kids so we partnered again with the DOE and presented that, and we had over 50 people that called into that on a Wednesday afternoon at 10:00 a.m.
So those are really successful for us and as we continue to grow and build and have the support, we kind of realize what do parents need and what resources do they need.
I think that's it.  
>> So, not only has Virginia EHDI been working on increasing our collaboration with parents, we have been trying to come up with events or ways to collaborate with parents and other professionals simultaneously.
For example, we have a parent and professional as an exhibiter at several conferences, like The Opening Doors Unlocking Potentials or we have a state Virginia Society of Otolaryngology and we take along with Virginia EHDI a parent or professional to be an exhibiter at these conferences for us.  Or with us, I should say.
And we also do social events, like we Have a Deaf and Hard‑of‑Hearing Day at a local theme park and we exhibit there with a parent or other professional.
And then we have a conference for creating shining stars, that's for early intervention providers in our state.  And so the last conference is every other year that they have this conference, so the last one we had a panel presentation, we had a parent, we had a hearing screener, we had an audiologist, an early intervention provider, and then Virginia EHDI staff.
And so the panel kind of showed the whole process from the hospital screen all the way through diagnosis, to intervention, so it allowed early intervention providers to see how these children end up in their services and, you know, questions to ask the providers.
So it was a great opportunity for them to learn about newborn screening.
And then we have some publications, we have collaborated with the EHDI chapter champion, a pediatrician in Virginia and has written articles for the AEP and ‑‑ I'm sorry, I just saw that card and it threw me off ‑‑ so she's written about the 1‑3‑6 EHDI process, as well as we've collaborated with the Center For Family Involvement to write an article on how to engage parents to increase the loss to follow‑up rates in our state.
And then we have been providing trainings to home visiting agencies in our states, so home visitors are the parents or professionals who go into the homes of parents prenatally as well as after the baby is born, they service birth to five years, so we've provided training to these professionals on newborn screening process and the importance of going back for testing if the children need it to reach a diagnosis.
So, we had a parent, an audiologist, as well as EHDI staff there, to educate these trainers on what information they can give to the parents, since they're in the homes with them.
And then in 2019, we'll be hosting a workshop for parents and professionals, holding space, trauma informed care, and this is to educate the professionals on how to discuss the conversation with parents once their child is diagnosed with hearing loss, so we're really excited about that opportunity.  
>> And then at the very bottom, the EHDI materials, so as part of the EHDI Advisory Committee, there was a parent perspective work group that was formed and that was really to focus on information that already existed and making it more parent friendly, and so, for example, reviewing letters that were sent to newly‑diagnosed families, we've got some fact sheets that Deepali will talk about later and looking at it and seeing if a parent can relate to.
One of the very exciting things and I will pass a copy around to each side of the room ‑‑ we do need these back because they were pretty limited with the printing ‑‑ there is already a Virginia resource guide for children with hearing loss, and Irene was very instrument with this, and one of the big accomplishments was creating a follow‑up companion guide and first one is for kiddos ages 0‑3 and we want this one for 3‑10 getting ready for later life and this is parents' stories and chock‑full of struggles and triumphs, talks about education and different choices and the underlying message is for parents to realize that they are not alone.  
[Pause].  
>> Oh, I went the wrong way.
Okay.  This is another product that we have developed with a lot of parent and professional input in our Virginia EHDI learning communities, and Teri is going to pass around a bigger copy, I know it's kind of hard to see that with half of it being cut off and this is the Virginia shared plan of care and this is a road map with children ‑‑ newly diagnosed children and it helps them navigate life after diagnosis and also to keep track of the various professionals involved in the family's life, both repeating professionals, as well as professionals like ENT ‑‑ I'm sorry, genetics, ophthalmology, infectious diseases, right after diagnosis if they need it, so we do have that going around, if you guys want to look, but we have a presentation tomorrow at 9:40 on Virginia EHDI learning communities and we'll talk a lot more about the shared plan of care in detail there.
So, as Teri mentioned, we have developed some informational cards if you'll say for the prenatal population, the one on the left is prenatal and we have it in English and Spanish on the back and one for after the birth of the child if they need further testing and these will be used by WIC agencies in our state and home visitors we talked about earlier, the home visitors will take these into the home and provide them to family, we will pass these around, but we have copies for you guys to take, if you would like.
I'll try to make it quick.
So, a really quick video that we have that we developed, and it will be used with home visiting agencies as well ‑‑ let me see if I can figure out how I can.... 
[Video played and music playing]. 
>> So that's just a quick video, that and these materials along with the shared plan of care, we review all of these materials with the parent work group and the Advisory Committee and this went through several revisions and we made it really parent friendly and got the feedback from the parents themselves to change some of the wording and so we've done that with all of our materials we've been developing.
Okay.  It's kind of cut off at the top, but this is just future goals for Virginia EHDI.
So we do have a lot of parent involvement and engagement in our systems and we're always celebrating that, but we would always like to improve, so in our EHDI Advisory Committee, we want to increase that parent engagement to 35%, just to kind of have that feedback to make our materials and our information more parent friendly.
We want to increase the cultural diversity and get new parents to the table.
A lot of times we find that we have the same parents coming over and over again and we would love to have them there and we would continue to want them there, but we want some new parents there to get a new perspective and we want a cultural diversity at the table too so it's representative for all the families in our state.
And then we do have a good communication built with professionals and parents in our state, but there's always room for improvement.
You know, we think that we need to be a little bit more transparent and more communication with these agencies, just to improve services for children that are diagnosed with hearing loss in Virginia.
So, we have some resources.  The resource guide that we mentioned, we've linked all of our websites, and then the articles that we talked about in this presentation.
If you go online, you can click on these, on the EHDI website.
Do you guys have any questions for us?  
[Pause]. 
>> Thank you.  I was wondering if your family matching program that you have going on, is there a significant difference between that and Guide By Your Side?
And also, if you can, have you, if you can address, have you thought about using that family matching thing or I'm not sure if it's the same program, but what did you use to use the audiology site visits, have you considered going into pediatricians' offices with that?  
>> Yes, we have considered going into pediatricians' offices.  Right now, the next period we'll go to early intervention offices first and then maybe adding pediatricians on at some point.
And the question about Guide By Your Side, it is kind of different than Guide By Your Side, just the fact that the 1‑3‑6 educators do a lot more visiting a professional audiologist and hospitals.
They also do a piece that's matching, but it's a little bit ‑‑ it's connected to our shared plan of care so there are actually some questions about early intervention, geneticists, and trying to get them to the resources and the information they need to move forward.
And they use our resource guide going around, they use that as a guide to support them and having the conversation with the family.  
>> Does anybody else have another question?  We have two minutes.  
[Pause]. 
>> No?  Okay.  
>> There's one in the back.  
>> Sorry if I missed this.  What training do the family educators receive to become family educators?  
>> Yeah, we briefly mentioned it, but very brief and maybe that's why.  At least twice a year, Virginia EHDI staff and a center for family involvement, Irene Schmalz we mentioned, several of them throughout the year, the group does this for family educators and it's to help unbiased support and they do like mock calls and will go over all the different things they can discuss during the call with the parents, as well as with the professionals, so their goal is to support the parent in every way and in an unbiased way. 
>> And is there sort of an evaluation of how they're doing, that, like, continued evaluation or continued training?  
>> So they're through Virginia Commonwealth University, so I am sure that they evaluate, they evaluate everything, yes.  
[Laughter]. 
>> All right.  Thanks.  
[Pause].  
>> Hi, I wondered, and you might have said, where does your video go?  Who sees that?  How do you get that out?  
>> So we have this on our social media, our website, and then we also will be using it with the home visiting agencies, so when they go into the homes of these parents, they will be showing not only these informational cards, but the video.  And we've actually e‑mailed the video out to various professionals, as well as the leadership in the home visiting agencies to get this out to all the professionals that would benefit from using it.  
>> And the other thing I would say is the Facebook video, it's meant for social media and if you go onto any social media site, just pass it along and it will keep going, and that was intended to reach anyone, not just Virginia.  
>> Anyone else?
[No response]. 
>> All right.  Thanks for coming.  Make sure you fill out your survey. 
[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. **