ROUGH EDITED COPY

UTAH STATE UNIVERSITY – CASEY JUDD

EHDI 2019 – TOPICAL SESSION 2 & 3 – INTERNATIONAL F
MARCH 4, 2018
11:45 A.M. ET

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>> SPEAKER:  Hi, everybody.  While you're waiting, um, there is some chocolate in the back, so please help yourself to a bit of a treat.  We want you to all have a sugar high so you can pay attention for this next little bit.  I think we'll go ahead and get started.  I would like to welcome you all.  I know that there are competing demands, probably some of you are very hungry, we're standing between you and lunch, so thank you for coming.  My name is Karen Putz, and I am just excited to share this program with you, some research that has been done.  It's, um, deaf adults FCEI, Family Centered Early Intervention programs.  I'm a deaf mom, I have deaf children, I'm also the co‑director of Deaf and Hard of Hearing Infusion for Hands & Voices, and I work with Stephanie, who's sitting down.  I got involved in early intervention almost 15 years ago, working directly with families, deaf mentors right here in Illinois, so really love the work.  That's kind of my heart.  I'm just going to ask my co‑panelists to introduce themselves.
>> SPEAKER:  Hello, everyone.  My name is Elaine Gale, and I'm from New York.  I currently work at Hunter College as a coordinator for the Deaf and Hard of Hearing and their instruction program.
>> SPEAKER:  I'm Stephanie Olson from Colorado.  Thank you.  Stephanie Olson from Colorado.  I work with the FL3 Project in Children's Hospital Colorado and Hands & Voices as well. 
>> SPEAKER:  Hi, everybody.  I'm Dr. Beth Benedict.  I'm from Gallaudet University.  I'm involved with early intervention in many different ways, for many, many years.
>> SPEAKER:  I'm Christie Yoshinaga‑Itano from the University of Colorado, and I'm a research professor in the Institute of Cognitive Science.
>> SPEAKER:  So, the six of us, and there's another person that's apart of our team, Michele Berke from California, unfortunately, she's not able to be here with us, but the six of us have been currently working together on the FCEI, and that stands for Family Centered Early Intervention, and we've looked at a study that focused on deaf adults, so that's what we're going to talk about today, the research that we've completed.  Before we go ahead and dive right in, we just wanted to give you a little bit of a pop quiz before we get started.  So, deaf and hard of hearing babies that are born to hearing parents is around what percentage?  I'm sure all of you already know the answer to that, when you look at the options before you, and everyone answered D, and that's right, I would say it's probably above 90 percent of those parents are hearing, and, so, those 90 percent of parents, often time, most of them, when a child is born deaf, they really don't know exactly what that's going to look like for them, what their future will entail, because they never thought that this would happen.  I also wanted to give you one example.  I'll give you a moment to read the next slide, and then I'll talk about it a bit.  I know that the text is fairly small, so I'll just go ahead and tell you a little bit about what's on the slide.  
When we first received our son's diagnosis, I looked at the doctor, he was hearing, I looked at the audiologist, she was hearing, I looked at the nurse, she was hearing, and we walked out.  I looked back at the receptionist, and she was also hearing.  I had no idea what this raising a deaf and hard of hearing child was going to look like until you, the deaf adult, walk into this room and experience this.  I don't know if you remembered, if you were here last year, we asked people to share their comments as far as deaf adults are concerned, and, so, this is a result of those powerful insights that we've received from you.  There was a woman from CSD, from California School for the Deaf, she is apart of an outreach program for children that are ages 0 to 5, so we talked about her experiences when she came to CSD, so if you just take a moment and look at the video before you, you'll learn about her experiences.
>> SPEAKER:  I have to say, one of the biggest benefits of coming to our school is you get to see deaf kids of all ages and deaf adults, and I did a tour, maybe a month ago, and, you know, new parents, their, um, little boy is 10 months old, and, um, they'd been really struggling with the fact that he was identified as deaf and what to do, and I gave a tour, they saw happy kids in very typical‑looking classrooms, and then they saw, um, they met the superintendent, they met a deaf teacher, then they met a mom who was signing, and they were all communicating, and she turned to me and she just hugged me and just started bawling, and she said I now see a future for my son, and I didn't before today.  So, it's very powerful.
>> SPEAKER:  Thinking about this, um, during that 10‑month period, what had happened with the mom, you know, thinking about going from not knowing exactly what to do, but then to have that insight as the parent went along.  When we consider her story, then we'll look at our research, and we'll figure out why research for deaf adults is very important.  There were three studies done before 2012, and we'll talk a little bit about them.  The first study was completed in 1998, and there was a group of hearing parents that focused on deaf kids, and there were also deaf parents that focused on, um, also the same group that was used, a control group and a group that we actually studied, and, so, we looked at vocabulary, we also studied language development within those groups to see the group that had the deaf mentor, to see if that group developed at a faster rate or at the same rate as the other kids involved.  There was also a study that was done on social and emotional aspects of children and how that child actually recovered and what they would do, if there was no deaf adult around, how would that child actually function in the space that they were in, and then also in 2011, there was another research study that was done, it was a survey that was actually sent out about parents' desire for opportunities to connect with mentors and role models, thinking about having their child see these individuals before them as role models.  So, before I go ahead and talk a little bit about our exploratory research, Beth, well, actually, Christine will come up a little bit and talk about, um, FCEI and the origins of that organization.
>> SPEAKER:  So, we finally realized that, maybe, and, actually, I should just ask, how many of you have been to an FCEI conference?  So, only a few of you know what it's about, so we decided that we should probably introduce that first.  So, FCEI, the Family Centered Early Intervention conference, is held every other year.  It was held last year, the next one will be in 2020 in Austria, and it was founded because about 15, 20 years ago, a delegation from Europe came to visit us at the Marion Downs Center, they had not started screening, and they wanted to know how could they begin screening, and they looked at our model, and they said we want what you're doing in Colorado, would you come and start a conference in Europe, because nobody in Europe knows what Family Centered Early Intervention is, and we need it, and, so, we, um, we partnered with the Austrians who got funding for this conference, and for those who haven't been there, it's a pretty magical conference.  The foundations for the conference is that in order for us to be willing to do this conference, we had to have partnership from Deaf community, from deaf leaders, from parents who have been to be visible in the presentation and program, as well as professionals, from physicians to psychologists, social workers, early intervention providers, um, speech‑language pathologists and audiologists, and it had to be free of, um, bias related to what method of communication was chosen by the deaf people or the children and families that we were serving, and, um, it is a remarkable, um, experience, to be in this group of people, and out of that has grown a deaf adult global leadership committee, which is composed internationally, and I think predominantly led by the American Deaf, who are part of FCEI, because deaf people in America have had many more, have much more accessibility to education than anywhere else in the world, and they, and people are eager from all over the world to learn from them.  The global parents of the deaf partnered with Hands & Voices, and that is just an amazing, um, organization, so, um, that's just to give you a little bit of background.
>> SPEAKER:  Hi, everybody.  Hi again.  Well, we do need to think Christine, really, for pushing to get deaf people involved at FCEI at all levels, so I do want to take a moment now to publically thank you for the energy that you put towards that effort.  In 2012, Christie went and, you know, laid down the law about deaf people being involved, and then in 2014, it was established as a group, the first meeting.  What you'll see here on the slide, the JCIH, um, came to an international consensus on guiding principles.  Was it 30 people, perhaps?  30 people, um, from the states, including myself, including Christie, including, um, weren't you there as well?  Yeah, so, we were deaf, we were there, and there were some deaf people, I want to say from Finland and a couple of other countries.  Belgium, that's right.  There was somebody from Belgium as well and had been their first experience as a deaf person, being involved, and, of course, as an American, I was very involved, you know, for many years, and, so, we were able to sort of give them hope, that there is a way forward.  
That was in 2014, and then in 2016, we added Karen, Elaine, Stephanie, um, Michele Berke, so our group keeps growing.  Where we are now is, you know, we were thinking about deaf people being involved and wondering kind of what is the best model for that, and we looked at the Joint Commission on Infant Hearing, the JCIH, they have several documents, and I don't know if you're familiar, well, let me back up.  Do you know JCIH?  How many people are familiar with JCIH?  Okay, about half of the room.  So, again, it's an American‑based organization, there are eight different professional organizations that hold seats at the table, and they write position papers and guidelines and so forth, having to do with infant hearing.  There's a new document out that's quite large.  It's a well‑respected organization, and many people look to the JCIH, um, as their guiding principles, and then the rest of the country really follows it.  It is on the website, you can find their position papers and things.  Most recently, there was a 2007 document, a 2012, um, called guidelines appendix or supplement to programs, and then they just revised it, and I think, I believe a new one will be released soon, so keep an eye out for that.  So, some of the guiding principles that we sort of borrowed from JCIH are up here on this slide.  Early, timely, equitable access to services, family‑provider partnerships, informed choice, emotional support, and you can see the rest.  So, how many of these principles talk about deaf adults being central to the process?  Where did we see that?  Anybody? 
>> SPEAKER:  Well, before they answer, just one moment.  You can just pick two.  Go ahead.  Pick two people from the audience.
>> SPEAKER:  Okay, so, look at number two, so, there are two.  Which ones are they?  Anybody voting for number one, early, timely, equitable access to services?  What about family‑provider partnerships?  Would there be something about deaf people there?  Three, informed choice, anything about deaf people there?  Four, family social and emotional support?  Number five, family‑infant interaction?  Six, use of assisted technology?  Seven, qualified providers?  Yeah, I think that, our audience thinks deaf people should be involved on every level.
>> SPEAKER:  And we agree with you.
>> SPEAKER:  But, in fact, it's here, collaborative teamwork and family emotional and social support.  So, these are baby steps.  We acknowledge that, but Elaine will talk more about the research. 
>> SPEAKER:  I know all of we agree that we should have those deaf adults involved in the process, and, so, in 2013, we have a paper that's going to explicitly talk about the work of adults in the process, talking about those two aspects highlighted on the slide, family social and emotional interaction and collaborative teamwork, and, so, that will be, that was published in 2013 by JCIH, and having deaf adults involved, and what does that, involving them internationally, what does that actually look like, and how can we study to find out what's happening.  So, our study looks at this, looking at deaf adults involved in the process and making sure those deaf adults are involved early, and what does their involvement look like.  We had questions that represented three areas, the newborn screening, the deaf adults involved in the early intervention process, and also knowing more about their background and contact, having that information as well, and, so, we sent out a survey through the FCEI, that list serve, about 350 people, we sent it to, we also sent it to the American College of Education of Deaf and Hard of Hearing individuals, there were about 250 people in that category.  
We also got information from Gallaudet's website and another list serve to send that out to international people with disability and disability organizations, and so we encouraged everyone to send out the survey far and wide, to receive the responses that we needed, and at the end of all of it, we got about 650, we got 1500 responses.  Actually, interpreter correction, we received 100 responses, and so there were 48 people, um, who we're going to report on today.  I'll talk about the elephant in the room, right?  All research studies have their limitations, and we, of course, have limitations with our study as well, and, so, we'll say that, um, the study was developed, um, in a very short span of time, and, so, making sure that those questions were clear, that was one aspect that was a problem for us, that was a limitation, and also making sure that information was available online, and knowing that everyone didn't have access to online resources, so we maybe weren't able to capture those individuals in our study, and also not considering those who were non‑English speakers and them having access as well, and thinking about what deaf, um, adults look like in general, their demographics, is something that we looked at as well.  Of course, we received 48 responses, and those respondents were from all over the, mostly from here, but from all over, and one question that we asked them, who is the first point of contact?  Like, if the parents realize that they have a deaf child, who do they contact first?  Is it a deaf person?  Is it a hearing individual?  And we'd say that 80 percent of them said that contact was made first with a hearing person, 5 percent was a contact with a deaf person, or with deaf and a hearing individual, both making contact, and 15 had both, and 5 had only deaf contact.  
We also asked other questions in the survey about the role of deaf adults and what would they do most often.  Um, more common and more often than not, the deaf individuals were mentors or role models or sign language instructors.  The least common responses were that deaf individuals were directors, and the slide, as we mentioned before, that mentioned about the first contact, remember, it was five or so people in there, it was 3 percent on this slide.  We also asked about the diversity of deaf adults and those adults that you've had access to that you, um, were they diverse in terms of race, were they diverse in terms of modality, as far as those deaf adults were concerned.  75 percent said they did not have access to diverse adults, and 25 percent said yes, they did.  We also asked them what do you think are the reasons why there is a lack of diversity?  Was it because of a lack of funding, or were there other issues that played into this lack of diversity?  You'll see some of the comments here on this slide.  They talked about attitudes and attitudes in reference to hiring.  
They also talked about that there was not an encouragement for those deaf individuals or adults to work in the field, and then, also, there was a lack of recognition of the skill sets that the deaf individuals bring to the work.  For deaf roles, we also provided examples, deaf roles of individuals who are involved in our family, involved in the early intervention, and, so, um, you'll see the roles before you on this slide.  Once a family meets a deaf adult, they are hesitant and not sure of what to expect.  After meeting and developing a relationship with deaf mentors, they are hooked, with a lifelong bond.  So, whatever life phase the child is going through, the family knows they can still contact their deaf mentor and talk about how to handle those experiences of what the child is going through.  The deaf mentors can continue to support the family.  Deaf mentors are really diverse, they are not all ASL users or ASL teachers.  A deaf mentor or advocate, they serve in those roles as well to empower the child to self‑advocate for themselves.  Also, to encourage and to connect.  
So, when deaf adults meet the family, you know, we realize that that relationship is a relationship that is long‑standing.  So, we have only a few moments left, so we're thinking about what can we do next, what are the steps forward.  I've talked a little bit about the research that took place before 2012, and now, of course, more research is focused on deaf parents with deaf children, and also looking at, um, that relationship as far as studies are concerned, and then also looking at why do deaf parents with deaf children, why do those children do so much better, and, so, we are looking at those children and how their vocabulary develops in comparison to their peers who don't have deaf parents.  We're looking at vocabulary learning, also looking at second‑generation deaf IQ advantage, and also thinking about that bilingual advantage as well, and then, also, we're looking at those kids who have received cochlear implants, and, finally, we'll mention again those children who are deaf, have cochlear implants, that sign, and that also speak, looking at them, having that bilingual advantage, so we need to show the research of those individuals, that the deaf adults bring so much to the table.  
Going back again, sharing those foundational principles, but thinking about the next step, there were two explicit categories, number four and number eight, where we talked about deaf adults, where we all agreed where deaf adults were involved in the process, or that they could be involved everywhere, and, so, looking at this, we think about the principles that are involved, there were ten principles, and out of the ten, two involved deaf adults more often, and, so, in a lot of cases, we'll say that people really don't have the awareness or understanding of what should happen.  So, before you, you see a wordle, and we took from that wordle all of the text that we used in the study, trying to figure out the millions of words that were reported, and, so, you'll see the responses that we received more often, those words are larger in the wordle, and, so, we took those comments and put them in, so that's what you see before you, thinking about those deaf adults, and, so, if you look at this, you'll see that deaf adults aren't there, you'll see all the policies, the principles, the family, all those people involved in the process, but you don't see deaf adults specifically.  We want to make sure that early, timely, equitable access is there, but it's not there.  Think about it, a parent who has a child that's very young, we want to make sure that that child, whether they be 10 months old or younger, receive the services that they need, and, so, Stephanie is going to talk a little bit about what we did last June.
>> SPEAKER:  Within 2018, we spent the afternoon working together, and it was phenomenal.  We had Karen Hopkins from Maine who shared, um, all of the resources that they use, we had Sabene from Austria who shared what that support looks like for her as a deaf and hard of hearing woman, and then somebody from London, somebody from New Zealand, very active with New Zealand sign language, and then we Skyped Jodie in, representing Sky High, and it was just, like, Christie used the word magical, and it really is, and I think what I love about this is the diversity and the ability to leave our egos in our home country, because we're all here, um, supporting families, and that was the focus, not what I, how my journey worked and how others got to where they are, but the fact that we are there, and our goal is to support and serve the families, and that gets better, as we all know, with research and data, and that's what Elaine has been working so hard on.  We had people from, um, all over, a young woman from the country of Georgia was there and actively involved.  Just amazing.  
So, now, we have the call to action, which will help unify us even more, and we took the words FCEI and added, for us to formalize and strengthen this program and fund it, of course, because we all need money, and collaborate and communicate, educate and evaluate, to continue with training programs, workshops and principles and goals, and then infuse and include and have an advisory board with diverse professions involved.  We have save the date cards.  This is a great way for you to combine a vacation and work and join together and learn from so many people, and I think a lot of times, we're so used to, of course, these U.S. heavy‑based conferences, but to go in and learn what somebody in Iran is doing for deaf and hard of hearing role models and mentors, South Africa and other countries, it's amazing.  It's a wonderful opportunity.  Paula is here, and she's been involved every year, and that's just been, um, incredible.  If you just take that card and dream, we can make it happen.  Anything else you want to add to close this, Elaine? 
>> SPEAKER:  The cards are in the back, the save the date cards, so you can pick them up in the back of the room. 
>> SPEAKER:  And Elaine has also been working on pulling all of this together for a journal article, so we'll be unfolding that, you'll see that unfold as well. 
>> SPEAKER:  Thank you all for coming.  When you leave the room, we want you to leave with one thought in mind as you go back to your state or territory.  Take a look at the services that are available, that you're engaged in, and make sure you engage those deaf and hard of hearing adults, make sure those individuals meet the family.  By next Tuesday, this is something that you need to do, right?  We want to make sure everyone is onboard based on the plenary that we had earlier this morning.  Thank you all.  

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