REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"Journey To A Better Understanding:  
Overcoming Hesitations And Misconceptions 
To Create Partnership"
Room:  Vienna
Tuesday, March 5, 2019
2:20 ‑ 2:45 p.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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>> Okay, five, four, three.... yeah, is everyone ready?  Take it away, Marcia.
Hi, everyone, I'm Jan Withers, I'm from North Carolina, I'm the director of the North Carolina Division of Services for the Deaf and Hard of Hearing.  I am deaf myself.
And the agency I run is mainly focused on the community services we provide and seven regional centers that we have, in telecommunication relay services and distribution, that's my agency I work with.
We also work on policy and legislation and so forth.
So, Marcia?  
>> And I am Marcia Fort, I am the EHDI coordinator in the state of North Carolina and that's sort of self‑explanatory at this point at this conference.
But we do coordinate all of the EHDI activities and the EHDI system of care.
We're located in the Title V maternal and child health program in North Carolina so we also serve children a little older than traditional EHDI with our program.
So, we work very closely with Jan and her group.  
>> JAN WITHERS:  That's correct.  So, Marcia and I are under the same department, Department of Health and Human Services.  We understand the value of working together, and so we started this, I'm wondering, who here, by a show of hands, are parents?  Great, great.
And how many of you here are audiologists or speech‑language therapists?  Three, great.
And how many of you here are early interventionists or deaf educators?  One, two, three, okay, three ‑‑ oh, four.
And how many of you are deaf or hard of hearing yourself?  Several.  Okay.  Me too, me too.
And how many of you are hearing and don't know sign language or cued speech?  Okay, that's a nice diverse group.  Great, I'm happy to see that.
Okay, Marcia?  
>> MARCIA FORT:  I forgot to show the picture [laughs].
So, the learning objectives for this session are that all of you will be able to describe at least three ways that EHDI programs can partner with other services and agencies for the deaf and hard of hearing in their states.  Identify some misperceptions EHDI and the Deaf community have regarding each other.
And describe how EHDI programs and Deaf communities working together can lead to optimal language, educational, and life outcomes for all deaf and hard‑of‑hearing children.
So, Jan and I have had a wonderful time working together and learning from each other.  Communication really is the key.
So, when I first ‑‑ I've been with the EHDI program for 17 years; I have not been coordinator for quite that long.
But when I came in as the coordinator, we really wanted to have more Deaf community participation in EHDI, and even though we were requesting participation, we were not having quite the response that we would like.
So, as it turned out [chuckles], last year one of my EHDI staff members at the last minute had some health issues and was not able to attend this EHDI conference.
And a member, she's retired from your agency, right?  
>> JAN WITHERS:  Yes, that's right. 
>> MARCIA FORT:  So a member of the Deaf community who had been working with us on our EHDI Advisory Committee came to my office on the same day that my staff member realized she wasn't able to come for a meeting with our program, and she worked for the Division of Services for deaf and hard of hearing before she retired and she was working with us to try to develop some materials.
So I said to her, would you like to go to the EHDI conference?  And she pulled out her calendar and happened ‑‑ this is a very busy lady ‑‑ to be free on those dates.
So, she took us up on that and came to this conference last year.
When she got home, she went back to the Association for the Deaf, North Carolina Association for the Deaf, and they were preparing to have what they call the Deaf Tar Heels Festival at the beach, so she contacted me and invited me to come to that festival with them and help the Deaf community better understand EHDI.
So, through that conversation with Linda, and some conversations that I had before I went to the Deaf Tar Heel Festival, we realized there really were some misperceptions.  Some perceptions that the hearing community had about the Deaf community that weren't necessarily all that accurate, but they were the true perceptions of the hearing community.
We also realized that there were perceptions in the Deaf community that were perceptions and not necessarily accurate.
So, we realized that there were misperceptions and we needed to build on that communication.
So, I went to the Deaf Tar Heel Festival and there were 85 or so people, so I was, I think, probably the only person in the room who does not sign fluently, and I do not, so I said that right up front, and they were very gracious about that [chuckles].
And I asked them what their perceptions were of EHDI.  I just put that out right at the beginning.
And they opened up and were willing to say that they felt like EHDI was only for cochlear implants.  And they felt like EHDI was not inclusive of the Deaf community.
So, I addressed some of that.
They also made a comment that EHDI is solely funded by the Centers for Disease Control and Prevention and hearing loss and deafness not a disease.
So, I addressed some of those concerns by saying EHDI is inclusive of all degrees of hearing loss, all modes of communication, we totally support family choice, and EHDI is funded by more than just the Centers of Disease Control and Prevention, and then I explained that the CDC functioned with EHDI, that the CDC, even though they have "disease prevention" in their name, they are very population‑health data related, and that opened some eyes and led to some more questions about the data.
We talked about how data regarding deaf and hard‑of‑hearing children is not always inclusive of the whole deaf and hard‑of‑hearing community; that there's information that comes from cochlear implant centers that just includes children who have cochlear implants.  There's information from listening and spoken language that just includes children and families that have chosen that route.
There's information from Schools for the Deaf that just include Schools for the Deaf.  There's information from public schools that just includes children with IEPs, so we talked about how can we build on our unique experiences in all of the communities to make a stronger foundation for all of our kids in North Carolina.  
>> JAN WITHERS:  That's right.  So if you notice, Marcia opened with the Tar Heels and how she opened that interaction.  Actually, technically that's pretty smart!
So, from my perspective, that's the same woman who came here last year, Linda, who came back to North Carolina and she contacted me immediately, wanted to speak with me, so she came to my office and told me her experience here and how she ended up here and I learned a lot and I felt like it was a very positive experience from her perspective.
And ironically, my agency is fairly large, we have several staff and organizations and committees and work groups and the list goes on, and EHDI is just one of those. 
So I had sensed that in the past and heard short comments going on there and I said okay, they focus on the clinical side, clinical and medical, and that was my perception.  I didn't really pay attention, it wasn't on my front burner, and after she came back, Linda came back, I thought oh, I thought there was an opportunity there and I was curious, and here's what the opportunity was.
At the time, I didn't have anyone from my staff serving on the advisory group at EHDI.
The person who did serve on the advisory group backed out and moved, or stepped down and moved, so, it was curious.  And I was interesting how accidents happen, right?  And accidents lead to good things sometimes and I seized that opportunity and I was excited about that.
So, communication is key, to open, you know, with an open mind, to start with that, and open with the hard questions.
Marcia and I talked about, okay, how can we plan this presentation effectively?  And we thought we would show a Venn diagram, and many people usually look at the top, deaf versus hearing, and there's just a small sliver of overlap here and you can barely see it, usually.
But now since there's more overlap, we're here.  And the center part became larger, so.... 
[Pause]. 
>> JAN WITHERS:  But there's more to that story.  Just let me tell you a little bit about my background.
I majored in counseling in college ‑‑ well, I grew up oral, in the oral program, I went to Gallaudet in graduate school, I learned sign language at that time, and I provided therapy to families with deaf and hard‑of‑hearing children for several years, so I was interested in early intervention and anything related to early development.
I served on the board of non‑profit agency that was set in North Carolina focusing on early intervention.
I don't remember the name ‑‑ I don't want to say the name, excuse me.  It wasn't a very positive experience, I felt very looked down upon and judged and people called me ‑‑ people talked to me in a very patronizing way and I tried to make myself an equal player in that group, but it just wasn't happening.
I was viewed as a "token deaf person" and so I didn't feel comfortable there and I stepped down.
There was one other deaf person on that board after that, and they didn't continue long and they stepped down and they haven't had anyone else since then.
From that experience, and because of my focus at the agency where I work, we focus more on community services, so within early intervention, that sort of took to the back burner until last year, and I found Marcia to be an amazing, wonderful, friendly person and we made that connection and moved on from there, and I'm really grateful for that, Marcia.
Let's look at the bottom Venn diagram ‑‑ oh, actually, excuse me, interpreter error, let's go to the next slide.
So, Marcia and I started a dialogue, looking at the different ways that we can partner and we needed to step outside of ourselves as a deaf person and as a hearing person.
And as part of the early intervention services, how we can, me as a person, bring in early intervention and serve the wider Deaf community, children and parents, and that center, that overlap space is really where we realize that's the tool for me to look at myself, and how much of parents we can include, how much professional ‑‑ professionals working with deaf children can we include and the connections that I have as well, what is the quality of the connections that I have?  How is that relationship?  What am I benefitting from this?  What am I learning from these individuals?
I hope they're learning something from me as well.
So I really had to deep dive into my own personal journey.  I'm still learning, and that's why I'm here, and it's been great for the last two or three days being at the EHDI conference for that reason. 
>> MARCIA FORT:  So I, too, am still learning from this and I think something that we both learned and the communities that we've served and work with have learned is that prior to us really working consciously to develop this relationship, I think there was some hesitation to really ask questions of each other, and we've created a really open environment where it's okay.
Jan has been so open and I don't have to worry, I can say, "I don't understand how the Deaf community, I don't want to offend anybody, but this is kind of the issue that I'm seeing," and she will help me understand that it's okay to say that and maybe how to communicate, or if I'm feeling like I'm not perceiving something right, I can check with her and she will help me understand from the Deaf community perspective.
The relationships that we've developed, not just between the two of us, but we have, through Jan and Linda, the woman who came last year, through their help, we have gotten much more involvement in our state with the Deaf community.  They are not hesitating, if we ask them to help EHDI with something, they won't hesitate, they will help us find somebody that will help us with that project or help us get involvement.
And from the EHDI perspective, I think it has really been beneficial.  
>> JAN WITHERS:  Thank you.  
>> MARCIA FORT:  So, some of the specific things that we have used to try to gain greater involvement both from the hearing community and the Deaf community and the Deaf community and the EHDI community, we have looked at family mentoring, and that is something that is included in the EHDI grants, but in our state, Jan and her division were already working on that, and so we have come together and realized that that is a common goal that we have, so we're working together to develop what that mentoring program should look like in our state, to be inclusive of all of our families and all of our children and all degrees of hearing loss and all communication modes.
>> JAN WITHERS:  If I can say something?  
>> MARCIA FORT:  Yep. 
>> JAN WITHERS:  The way I see my role, I realize that I have a connection to the Deaf community and I can be that bridge to Marcia and her field, and I'm hoping that that will build in the future and build a good collaborate effort in the community.  It's not just me and my staff, but it's the community and her people as well. 
>> MARCIA FORT:  Yes, I would absolutely agree with that description of a bridge, and hopefully we are serving as a bridge to your community as well, so that's the hope.
So both Jan's division and the EHDI program, we have an Advisory Committee and there's a council for the deaf and hard of hearing, so Jan extended the invitation, so EHDI attendance that council.
That is a council that is governor appointed, so we are not official members, but we are friends of and are welcome to participate on that.
And we have deaf members or deaf‑blind members on that committee now for EHDI.
We participate in events, I attended the Deaf Tar Heels and we are attending events that are publicized.
If I put something out, the Deaf community publishes it; if the Deaf community puts something out, we publish it to try to encourage participation with both groups together.
One‑on‑one conversations have been amazing, small group and individual conversations.
Visiting with other agencies, so we have had families visit their agency in their regional centers and some of the Deaf community has come and visited with the EHDI program.  So that has been great.
And joint projects, I think the family mentoring is one of those that we're working on and we're looking at ‑‑ we already have some legislation in North Carolina for education of deaf and hard‑of‑hearing children and we are certainly working in partnership to try to strengthen that as well.
Any other joint.... 
>> JAN WITHERS:  Yes, actually recently the CARE Project, we have a booth here, or they have a booth here, they recently had a parent‑professional collaborative last weekend and I think there were about 150 or 170?  
>> MARCIA FORT:  175. 
>> JAN WITHERS:  175 people that were there.  Wow.  She and Dr. Sexton who founded the CARE Project, came up to me and asked if I could help set up a workshop on Deaf culture.
And Johnny, Dr. Sexton, had already developed a program, an outline, about ‑‑ and one piece of that was Deaf culture, and I said sure, I'm happy to do that, and I also realized there was an opportunity there for more Deaf involvement, and I recommended okay, why not have a deaf host?  We can have a deaf person introduce every workshop and people can get associated with them, and I talked to my staff and we all agreed at the presentation, we would not do on Deaf culture but we would have a panel and they could talk about the community, and they were wondering, "What is community?"  People are so fascinated by deafness and we had a diverse panel on our own, why didn't you sign growing up, et cetera.
We had a panel each talking about their history.  I was not there personally, but Marcia, can you talk about that and what you saw and what people's reactions were?  
>> MARCIA FORT:  Sure.  So the panel that was put together was very well done, the CARE Project, if you're not familiar with that, really focuses on families' journeys and families' journeys through this world of hearing loss and deafness, and so the panelists presented their journeys as members of the Deaf community, so it fit right in as a focus of the meeting.
They did a great job.  Jan knew she wasn't going to be there and surprised us with a video of her journey at the beginning, so that was nice!
And every person in the room was looking at the panel and focused and really listening to those journeys and realizing how similar those journeys were to their own.
So, it kind of ‑‑ it made people realize that the communication mode doesn't necessarily affect the journey.  And I think that was huge for everybody in the room.  
>> JAN WITHERS:  One thing, let's go back a little bit, if you don't mind?
Yes, yes.  So think about it.  People who work in different specialties, in early intervention or they're an audiologist, how many deaf people do they know?  How can they get that introduction from the deaf parent to the family?
And that's why it's really important that we are involved, that we can carry that connection and make that connection and hopefully see more and more of the middle section growing, this overlap right here, right?  
>> MARCIA FORT:  Mmm‑hmm.
So what we have found in North Carolina is that working together definitely makes us strong.  The common goals are stronger and more similar than maybe any of us thought, until we open the communication.
And we put these two because of the personal with the hands connecting to make a stronger bond, and then also the different threads or colors of yarn coming together with everybody comes in with a different perspective and your own perceptions and understandings, but if you can get in a situation where you have conversations, meaningful conversations where everybody listens to one another and works to understand all of the perspectives, then you get woven together into a really strong bond that can go a long way.  
>> JAN WITHERS:  Any questions for us?  Comments?  Yes, in the back?  
>> [Away from microphone and unable to clearly hear]. 
>> Has anyone questioned your relationship ‑‑ 
[Room chatter].
[Chatter unable to hear]. 
>> Has your relationship been put to the test since you've really made this concerted effort?  First and foremost, just thank you, this has been really insightful.
But also, has your relationship been tested?  Has anyone from either side of the community tested it to see if it was a true foundation of, you know, built ‑‑ it works really well, we like it, and somebody tests it and then you have to see how it stands up, right?  
>> JAN WITHERS:  Hmm.... 
[Pause]. 
>> JAN WITHERS:  Thank you for that question.  I have to make sure I balance the good relationship with the Deaf community.
So in my ‑‑ it's a challenge from the Deaf community.  To me, I'm representing that connection.  I have to make sure that I'm balancing the relationship with ‑‑ building that relationship with the right community and they can pass that message onto other people in the Deaf community.
What I do, to help them understand it, and also what's important is that Marcia is there with them, so they see what she's doing, so she shows up, she goes to the NCID meetings, and that's a good example, right, and she shows up for that.  She drove there on a Saturday, right?
But we haven't been challenged yet.  But it could happen.  We'll see how things go.
A question, I think I can answer that question as well.  
>> [Away from microphone and unable to clearly hear]. 
>> Okay.  My name is Emily and I am a North Carolina audiology consultant.
I think I can help answer this question, too.  I see Jan as one of my role models and I see my supervisor as one of my role models, so watching them work so hard to work on communication, it sets an example for the rest of the consultants and also for the Deaf community.  
>> JAN WITHERS:  Thank you, Emily.  
>> MARCIA FORT:  And I will just add that I really haven't had ‑‑ haven't felt any significant challenges yet.
We try to be as responsive.  I try, and Jan does too, be as responsive as we can as soon as someone asks a question, but it really has been kind of an amazing journey together.  It's a journey that will continue.  
>> JAN WITHERS:  I do want to add to that.  The two of us plan to.... oh, we are trying to find common ground, right.  We found common ground, and we're starting to see some challenges and it has to be within the framework of that process.
Hopefully that will help.  
>> Any other questions?  
>> JAN WITHERS:  We have one more question.  I think we're right on time; okay.  
>> I just wanted to ask, like, if there was anything that you guys had to offer to parents who are trying to talk to the medical community and how to be more collaborative together with the Deaf community, because where we're from, it's a huge divide, and we've switched speech‑language therapists to ones that will be more open to our choices.
But how do you start that conversation with that community that maybe doesn't feel like they're outreaching like I'm trying to.  
>> MARCIA FORT:  So interestingly enough, this just came up in my state.  So we had a family that was making a choice and did not feel like they were being heard by the medical team, and so Jan was contacted initially and then she called me [chuckles] and we worked together to really communicate with that family and figure out what they were really looking for.
And I also have had subsequent conversations following all appropriate privacy rules [chuckles], but with the medical team that was involved in that, and stressing to them the importance of listening to the family and that it is the family's choice.
So, we're starting that work together.  I think people are realizing that they can reach out to us now, so.....
I don't know that we have an answer yet, but stay tuned!  
>> [Away from microphone and unable to clearly hear]. 
>> MARCIA FORT:  And I think we may be out of time.  
>> JAN WITHERS:  There are several different ways to connect with the Deaf community, and it depends on your state.  And I'd be happy to meet with you after this to find out which state you're in and if you'll let me know, maybe I can find a contact for you.
But remember, the Deaf community is very diverse.  You might meet someone who doesn't fit with you, right?
So you might have to find someone else.
There are deaf people in the community I don't really want to get involved with.  It's just like everyone else, right?  
[Laughter]. 
>> JAN WITHERS:  So it just happens.  
>> MARCIA FORT:  So I think we're out of time.  We're both here if you have anymore comments or questions.
And thank you for coming!  
[Applause].
[End of presentation].

** 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. **