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EHDI Annual Conference
Topical Session 3 - Capitol 3
March 18, 2024
2:25 P.M. - 1:50 P.M. CDT
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	>> JULIE REMS-SMARIO:  Hello, welcome, my name is Julie Rems-Smario and I work as an early language interventionist.  With an educational program.  
	I am a consultant at the California Department of Ed.  And my colleague here.
	>> LAUREN PETERSEN:  Hello, everyone, I'm Laura Petersen.   LTP is my sign name.  We have worked together for a very long time at the California Center in Fremont.  
	We serve as the -- we serve families from 0 to 5 all over the state and we provide resources and information.  
	>> JULIE REMS-SMARIO:  And we are working closely with our EHDI Coordinator here from California, as well.  
	We have a third researcher, Dr. Marlon Kuntze, who could not attend.  Involved with research with us.  
	So he is here with us in spirit, although he could not attend today.  
	So just in summary, want to give a little review.  
	So how we did this study, the metrics and methods, so we sent out a survey and in that we talked about the data.  We had the interview.  We wanted those results there.  
	And then the discussion.  
	And we were limited in this study, which I will talk about that in our conclusion.  And in the future what to do with the study.  
	Okay.  We'll work out logistics here.  Just bear with us as we kind of feel like an octopus with many tentacles reaching things.  
	So in this study, we wanted to inform the families of what this would look like.  We knew it would impact and affect these families.  So we wanted to inform them.  And we have informed family choice.  And what that is.  
	We know that these families get information and we want them to know what their choices are.  
	And so we have to learn about those language opportunities and what that looks like.  
	What kind of guidance affected their decisions.  
	And what kind of discussions they had to have their child become literate.  
	So this was a lit review.  You can read through this.  And so this was a decision that the parents made about their linguistic opportunities.  What they had -- what they were influenced by with the manner.  
	And the amount of information the families got.  
	Did they receive minimal information or did they receive an abundance of information?  
	And then how was that integrated and then influenced by professionals.  
	Was there a sense of feeling overload for them?  Were they overwhelmed?  Because research does show that these four factors play a part.  
	It's important that the information given, if it's different or conflicting, that can be very confusing.  
	So the information that was shared -- oh, hold on a second.  
	I just want to make sure that we've got our slides matching up here.  
	So give us a brief moment.  
	So we wanted to know what was the family's initial perception.  Because ASL might seem completely foreign.  They are unfamiliar with this.  
	And what communication options.  It might seem that everything is equitable.  
	And often with spoken languages, there's more comfort coming from that family perspective.  There's less fear because then they can feel like, well, we can get along.  We can have this matching language.  
	And so there's a perception of spoken language can help your child be more successful in academics.  
	And in literacy, as opposed to not having a spoken language.  
	The information that was shared with the families showed that the screening was selective.  
	The families may think that the task of raising a child, this was more of a struggle than it needed to be.  
	If they don't know that there are other perspectives, they might meet a medical perspective.  
	And they are only giving one perspective to those parents.  And they are not getting the entire scope of options.  
	So more lit review here.  
	What families may not have been told.  
	So this interaction is key for this language development.  That language is a two-way street.  It is not just one way, one person.  
	And so you have this eye contact that you have with this child.  And it builds upon that.  But you first have to have the initial contact.  
	And so the other sign for language deprivation is signed this way.  
	There are two different ways that it can -- it can cause that long-term developmental gaps.  
	You can have emotional developmental gaps.  And impacts on the emotional development.  Not just the academic.  
	And then the social is also impacted.  
	So perhaps you want this child to have this equal experience.  
	And with their development of language.  
	For this presentation, we are focusing on the question of the study, the questions of the study.  
	How was the journey from hearing screening to school placement for families who chose a school where ASL is the primary language or plus early intervention, where ASL was that primary language of instruction.  
	So we're talking this timeframe from the hearing screening, so age 0 and we notice there's that gap.  
	And so from that point where the family first learns that their baby is Deaf and if they could go back in time, would they approach it differently.  
	Do you want me to do the slides?  No.  
	>> I'm just wondering in our audience, I want to know who is in our audience today that how many of you are parents?  Show of hands.  
	Okay.  
	Okay.  How many of you are audiologists.  
	And how many of you are early intervention teachers of the Deaf?  
	Okay.  
	All right.  
	Good numbers.  The majority of you.  
	Anybody here in another medical profession?  
	Okay.  Speech-language pathologist.  Okay, we have a researcher over here.  
	Nurse; nurse.  Okay.  
	Okay.  
	All right.  
	We have somebody in the mental health profession.  
	How many Deaf professionals are in the audience today?  Round of applause for you all.  
	So I'm going to go ahead and switch.  And do you want me to take care of the slide?  I don't know.  I got it; I got it.  
	I'll go ahead and switch to spoken language.  Are you good with that?  
	Yes.  
	The reason why she's switching to English is because in this context today, this research is relatively new so I wanted Laura to be able to speak in her first language her native language so I gave her permission to speak as opposed to signing if that's okay with the audience.
	>> LAUREN PETERSEN:  English is not my native language also I heard the interpreter say native but natural CODA a child of a Deaf adult so clarification it's not her first language.  Okay.  
	>> So just to be clear, so this data that we're going to be share with you is -- comes from two sources.  
	One is a survey.  34 families.  
	And then the other one is interviews of families.  
	So I'm going to focus on explaining the results of the survey.  
	So first, just family demographics.  
	Where the families are.  How old their child is.  
	What initial resources, what initial information did you get as a family.  
	Who was your -- who did you get the most information from?  
	And what resources did they actually receive?  
	And what difference would it have made to have ASL -- known ASL and Deaf professionals earlier on?  
	So we did the survey.  We had both hearing and Deaf parents.  Both respond.  But we ended up focusing just on the hearing parents because we wanted to know what their journey was like.  We sent out the survey to 104 families and we got 34 hearing parents, families, to respond.  
	>> Just hold one moment.  We need to -- yay.  This doesn't seem too secure, this pseudo platform.  
	Can everybody see the interpreter okay so she doesn't need to step on that suitcase?  
	Thumbs up?  We're good?  We can all see the interpreter?  Okay.  
	>> So of the 34 families in the survey, the ages of their children are right up here.  
	0 to 3 was the smallest group.  Understandably so.  Because those are the families that are overwhelmed and probably don't have time to respond to all of their emails or requests for surveys.  
	Then we had a good position of those who were 9 and older and that's who were 4 to 8.  
	We did ask this question.  
	I'm not sure how valid, how much information you can really gleam from this.  
	At the California School for the Deaf we use the term Deaf as an inclusive term.  So -- and there's really no good definition of what it means to be hard of hearing.  
	So I find it very illusive to figure out which.  So we tend to use Deaf as an inclusive term.  But this is how families identified their child as either Deaf plus, Deaf, or hard of hearing.  
	How families initially communicated.  
	So you can see that the biggest portion were using spoken language.  
	Whether that was spoken English, whether it was their home language, whatever that spoken home language was.  Whether it was spoken English with the addition of gestures and pointing.  
	That was a good percentage of the families.  
	Signing and speaking simultaneously was also a big percentage.  And then those using just sign was the smallest.  
	So now I'm going to go into what the first information that families received.  And who they received it from.  
	And were they satisfied with the information that they were receiving from these professionals.  
	I'll give you a minute just to look at this.  
	So you can see that most first point of contact for families was the audiologist.  
	Right?  
	And interestingly enough, 57% of the families who had contact with the audiologist were not satisfied with the information that they received.  
	Second would be the early intervention teachers, the home visitors.  
	And over 50% of them were not satisfied with the information they received.  
	So this was a little surprising.  
	And that little, little tiny nothing at the end where it says Deaf professional, none of them received information from a Deaf professional.  
	>> (Speaker off microphone).
	>> No, this is just -- this is a very general -- not specific to mine.  Just generally the information that you received.  
	Did you guys all get that question?  
	She was asking -- she was asking whether this was specifically the question was about language and this is not.  This is just in general how satisfied were you with the information you received.  
	Good question.  
	And feel free like to interrupt and clarify.  I'm happy to do that.  
	So this is about language recommendations.  And this is what the audiologist recommended to families.  
	So not that surprising.  It is kind of their job about cochlear implants, hearing aids, all of that.  
	We have a question?  
	>> I'm just wondering, could you please -- okay.  Copy sign will happen in ASL to English.  
	How many of those had hearing loss but weren't included in the count?  
	So how many -- how many of those audiologists had their own hearing loss?  Or is that not included?  
	>> We didn't know anything about the audiologist.  We were just primarily focusing on the family's experience so we had no information in regards to the audiologist, the background.  
	Any other questions?  
	It looks like there's one there.  
	>> So the number on the left --
	>> Hold on.  
	>> So the number on the left is the number of responses; is that correct?  
	>> Yes.  
	>> And then -- but --
	>> So it was who was the first point of contact that you first got information.
	>> Okay.  And then you said that -- so are you counting the sum of it, the yellow, as -- because you said that 50% of people who interacted with their early interventionist and over 50% who interacted with their audiologist were not satisfied so you're only counting the green as satisfied.
	>> Yes, the green is satisfied.  Yellow and red is less than satisfied.
	>> Okay.  
	>> Another question?  
	>> Did they not ever have anyone in the hospital educate them?  
	>> It was never brought up.  
	All right.  I'll move on.  
	So here -- so we also had in this survey, we had opportunities for families to share kind of what their experiences were.  
	So we were told our son was a perfect candidate for a cochlear implant when they could not have possibly known that.  And it has not worked out as expected.  
	We never discussed what would happen if the cochlear implant failed.  And I wish we had begun learning ASL during the cochlear implantation process.  And these are just quotes just from what they said in the survey.  
	We were told to wait it out with language development.  My daughter's ears might grow and they could put tubes in her ears to help clear the canal.  
	These are just direct quotes from the survey.  
	Any questions?  
	>> These are from some of the different people or these were specific from audiologists.
	>> This was specifically those who had audiologists.
	>> So these are actual things that parents were told by audiologists?  
	>> Yes; yes.  
	So this next one, I'm kind of curious what you make of this data.  
	So this is in California they are called Early Start teachers.  Our early interventionists who do the home visits.  What they were recommending for language.  
	I was surprised to see being neutral was the No. 1 answer.  
	Do you guys -- do you make any sense of this?  
	>> So my view when I first look at this is this does not match the experience.  And then the second, how do they know that they were neutral?  
	Because it's already a hearing perspective.  So is it already skewed towards a hearing perspective for spoken language?  
	>> To answer your question, I think they would say, oh, here, you can do ASL.  You can do spoken.  You choose.  And that's it.  That's what I think of being neutral.  
	>> Another perspective I thought of is you present all the options and you follow their lead.  So my assumptions --
	>> Can everybody hear?  
	>> My assumption when I first look at this graph from an early intervention provider standpoint, both -- all of the many options for communication are presented.  And then follow the family's lead.  
	So in my mind neutral is you presented everything available and now you're following what they prefer.  
	>> I had a question; is this on their first visit?  Or is this over time?  Because I know as early interventionists on our first visit it's overwhelming for a lot of parents and we're presenting a lot of information.  
	So is this over time or was this on Visit No. 1.
	>> You make a very good point I don't know if it's all in Visit No. 1.  Our survey wasn't specific enough for that.  
	And you make a very good point that it is very common for us to like, you know, bombard the families with all of this information.  And they only heard one thing that you said.  So whether it was from what they were able to take away, what the person actually said, I don't know.  
	But that's a good point.  But I think one of the things is that in this profession where we have an epidemic of language deprivation among Deaf children.  
	For a large majority of our children, whether they are using spoken language, whether they are using sign, a lot of them are language deprived.  Have language delays.  
	They are not at grade level.  
	So it is a big issue.  
	So for me, speaking of this, this being neutral, I don't think is working.  
	So just like when the person said, I wish I had pursued ASL while I was pursuing a cochlear implant for my child.  
	The idea that, okay, you have to pick one, I think we need to throw that out.  And just say, sign, gesture, do what you can to have your child understand.  All of that helps with language development, with prelingual skills.  
	Eyegaze, eye contact, being able for the Deaf child being visible -- being visual is going to be a strength of theirs.  
	And so if we can use those skills, regardless of whether they are going to have hearing aids or cochlear implants or be talking, whatever, we can still encourage those strengths of their visual attention early on, so that it can help them academically.  
	So like for example, I think somebody was telling me that it can take -- okay.  So the child gets identified.  Great.  
	Now they want to get hearing aids.  
	Okay.  It can take six months just to get an assessment for hearing aids.  
	So what does the family do during that time?  Right?  It is a critical period for language.  
	And so I don't think being neutral is helping those families.  
	>> (Speaker off microphone).
(CHUCKLES).
	>> So that's why HRSA has disseminated the update for all of you to add language models to have that supplemental programs.  For language.  So it can be a strength within that language development.  
	I'm very excited to see that shift in the HRSA system.  
	>> So this was surprising.  
	This was surprising, as well.  
	That most of these families were actually learning sign pretty early on, by the age of 3.  A majority of them were.  
	So 78% of the families learned ASL before the age of 3.  
	But what is interesting when asked, okay, now in retrospect look back, what would you do differently?  
	So this was really surprising to us that even though these were families who were learning ASL, maybe they were doing baby signs.  Maybe they were doing food and milk and tired and you know whatever, but -- and maybe they wished, okay, I really wished I had really grasped it as a language earlier and was giving my child much more other rich language earlier on.  
	So yeah, so in retrospect it's very clear that they wanted to learn more ASL, contact with Deaf professionals.  A couple said speech therapy.  
	One said -- I think -- one or two said nothing.  
	One said focus on hearing technology.  
	But we were surprised at how clear the results were.  
	Here is some of what they said.  
	Learning ASL would have prevented their experience of feeling depressed.  
	Having access to ASL in classes from the beginning would have boosted their confidence in parenting their Deaf child, leading to less stress and worry.  
	And many of their child's behavior issues disappeared once they were able to effectively communicate with them in ASL.  
	I think I have more of what they said.  
	See.  Oh.  
	So what would be different.  
	We asked the specific question, what would be different in your child's education if you had earlier information on sign language?  
	I would have liked to have known that see signs, home signs and gestures are not language.  
	I feel so guilty for not having learned ASL the second I was told my child was Deaf.  I cannot get those years back.  
	My family would be more educated about the Deaf Community and I would feel more comfortable about having discussions about my child's Deaf identity.  
	So we asked this specific question would it have made a difference in your child's development or education if you had had accurate information on sign language and had met Deaf professionals?  Over 75% said yes.  
	And I know there's been workshops here at this conference about how do we get more Deaf and hard-of-hearing professionals in front of families and connected with families within the EHDI system.  And this data really supports that.  
	So kind of just in summary, the frustrations that families shared through this survey was ASL wasn't mentioned.  
	There was no research-based information about language being shared.  
	There was a strong focus on cochlear implantation.  
	And sign language was seen as a last resort.  
	And I think -- and this is I think in this Early Hearing Detection and Intervention professional community, there is an issue with not seeing ASL as equitable to spoken English, spoken Spanish, spoken Hmong, whatever it is.  
	And it is that language equity issue.  That it is just as valid of a language that can lead to academic success.  And literate children.  Which is what we all want.  
	>> Okay.  Well, one of the benefits of being tall.  It's always been a challenge to being tall.  But now it's not.  I see it as a privilege and an opportunity.  
	We wanted to know if the families experienced based on their stories and narratives, there were four family members.  We surveyed four families.  
	And we had the interview questions.  And I'll give you an idea of what those looked like and what we asked.  
	And the question was is being Deaf a medical or educational issue.  
	When you first found out that your child was identified as being Deaf, what were your thoughts surrounding that?  
	And how have those thoughts changed and your perceptions?  
	The second question was, here it's up on the PowerPoint.  And I'll sign that for you.  
	How has a bilingual, ASL and English early education impacted your child's language, academic readiness and social-emotional wellness?  So that was the second question that we posed to these four families.  
	And the last question was, what advice would you give to other families with the knowledge that you have today?  
	Now, during the interview, we focused on three major themes.  And we noticed that three major themes, there was a pattern.  
	The family systemic audism, the hearing family experienced that, too.  It's not just Deaf people.  
	Another common theme, they realize and recognize the benefits of ASL.  
	And I have to be honest, that surprised me.  I mean, it was really nice to see.  But I wasn't expecting that.  
	And the third major theme, the families emphasized the importance of Deaf professionals and the Deaf Community being involved with the child.  
	Okay.  
	Now let's go back to the first major theme.  Systemic audism.  And the family's experiences associated with that.  
	One parent said, in regards to the medical field, the medical system, one parent said, I experienced many doctors at the beginning saying, oh, your daughter does not need to go to a Deaf school.  They minimized it.  
	Again, the second quote is from somebody's experience with early intervention.  
	If you want your child to be referred to a Deaf school, you have to convince the IFSP or the IEP teams that your child needs ASL.  You have to work to get past their biases.  
	Another quote, and this was from a family member, my family would say this about my child, oh, she can hear.  So she does not need services.  Again, they would minimize.  
	Okay.  The second major theme was the benefits of ASL.  In terms of the family's experience in regards to this.  
	Now, in relation to socialization, they said, my son now has both Deaf and hearing friends.  
	He is enthusiastic about socializing with others.  
	Okay.  
	Another quote relative to literacy, a parent said, my daughter can understand concepts in ASL and connect them to English words.  
	She has developed advanced reading skills and demonstrated confidence with the I can attitude.  
	A third response, and it's relative to empowerment, a parent responded with, when my son struggles to express himself, we have three languages to choose from.  ASL, English and Spanish.  
	That provides us the confidence to be able to support him.  
	And the third major theme that we noticed was the perspective of Deaf professionals and the Deaf Community.  And the importance of professionals and the Deaf Community.  
	In terms of navigation, the combination of lived experience as Deaf people and the professional training that Deaf professionals have are a valuable resource for helping families navigate the challenges and decisions that come with raising a Deaf child.  
	I just presented at another workshop, it's the DCCW Deaf cultural -- Deaf Community cultural.  At 3:00 o'clock I will be doing that.  If you want to know more about the DCCW Deaf cultural, that will be at my next workshop at 3:00 o'clock.  
	The next comment was in regards to celebration.  And it helped the families in terms of they saw greater opportunities that exist for their Deaf child.  
	Having the Deaf professionals involved.  
	And the third quote was in regards to knowledge.  
	Deaf peoples' lived experience is not often passed on genetically.  So most Deaf children need to get it through their parents.  
	Making connections with Deaf communities.  And Deaf professionals.  
	Okay.  Time for discussion.  Yes?  
	>> I'm wondering do parents in the audience have anything you want to add to what we have just talked about?  Do you have any comment that might fit the presentation or might not fit?  Anyone?  
	Yeah.  Okay.  I see someone's hand.  Okay.  Let's get the mic.  
	>> Hi, my name is Kelsey.  I am from Kansas.  I am a parent of two children who are Deaf and hard of hearing.  I'm also a social worker and I work for the commission for Deaf and hard of hearing.  And I could have written these responses myself they are extremely accurate and I'm glad it's finally being discussed here at EHDI because this is something -- this is my third conference and I'm glad this is being brought to professionals' attention.  So thank you.
	>> Thank you for sharing.  Thank you.  
	Another comment?  
	>> So I'm the undercover pediatrician in the group here.  
(CHUCKLES).
	>> But I'm also a parent of two Deaf children, three boys, two of whom are Deaf.  The first has moderate to severe Deafness and has hearing aids.  And graduating college in May.  So good for that.  
	>> Congratulations.  That's wonderful.
	>> My middle son is hearing.  And he's in college, also.  
	And my youngest son is severe to profound and has a CI.  
	So we were -- we went through the gamut.  And the audiologist in New Jersey who diagnosed -- well, yeah, diagnosed, showed us the first audiogram and said, he should be able to get a job some day.  
	And well, that was the one comment.
	>> Oh my.
	>> His dad is a pediatrician, his mom is a speech pathologist.  So yeah, I think he'll get a job some day.  
(CHUCKLES).
	>> Anyway we came to St. Louis because St. Louis was rich in Deaf resources.  
	And my wife's family was from there.  So it was a perfect combination.  
	We met Chris Clark at Central Institute for the Deaf.  Central Institute for the Deaf is very oral, very cochlear implant oral.  We through all of our early intervention folks we got in touch with Sarah Setly at the Illinois School for the Deaf so we got that kind of thing.  And she signed a lot while she was talking with us.  
	So while she was doing developmental therapy at our house and all of that.  
	And then we end up mainstreaming all three of our boys, including the one.  So we used ASL along the way a little bit.  Not as much as we should have.  But when we had our third and he was severe to profound, we -- one of our family members actually said, we should take an ASL class.  
	I was like, well, yeah, we should, you know, we've been learning it the whole time.  My wife is a speech pathologist.  She did her she called it speech boot camp or listening boot camp because it was all sort of things to get her -- because I'm hearing, she's hearing.  So the emphasis was to be unhearing.  But we experienced these people at the Illinois School for the Deaf we experienced people who did only sign.  We went to a parent infant institute there at ISD where the sign in front says Illinois School for the Deaf and we had mainstream schools we were passing by.  We had this office and office I could go on with the story.  But we had different experiences, you know, along the way.  And that's like that's the most important thing.  Our son has one CI.  
	And our -- some of our professionals said, well, the one that taught us ASL was very pro ASL.  And was very anti-cochlear implant.  
	So I mean because she was a strong member of the Deaf Community in Illinois.  And she is in all kinds of organizations and such.  
	I mean, we just had opportunities, which not everybody has.  And we have exposures to multiple things.  And that's like -- that's the biggest thing.  And that neutral, I know that neutral was just not to commit.  I think it was just not to commit to one.  You know, because we've had people in our lives who said oral, oral, oral, CID, it's oral, oral, oral.  
	They also -- well, I don't know if they really do total communication.  But I think total communication was that little tiny thing but it's really important.  
	I mean gestures are important, ASL is important.  Speaking is important.  And lipreading.  My oldest surprised us with, Mom, can you move out of the way, I can't see Nick talking.  You know, when he was, I don't know, two or three.  
	So lipreading, that's something I don't hear very much.  But I guess you need to know the words when you're lipreading, you need to know the words that you're reading.
	>> Yes, you need that language.
	>> So that's kind of like a later-on thing.  But he needed spoken language and if he couldn't hear it.  He made up for it.  
	I'm going to stop talking.
	>> Yeah, thank you, thank you so much for sharing.
	>> I can write a book.
	>> Thank you.  
	Again, thank you very much for sharing.  
	And I know now I have to tell you this is very personal to me.  I'm a Deaf individual.  And I come from a hearing family.  There's no other family member that's Deaf, except for me.  I did marry a Deaf man.  I have three hearing children.  
	My middle child, my son, also has three children.  And he just had the third baby born on Christmas Eve.  And that baby is Deaf.  
	And the baby is 11 weeks old.  And his mom is hearing.  And she had never had any experience with ASL.  But I am literally witnessing her journey in her life having a Deaf child.  
	And having hearing parents.  It is -- oh, I appreciate you hearing parents.  Because I know it is not easy.  
	Does this resonate with anybody?  That the ambivalent medications?  How would you sign that concept of ambivalent medication?  Medical, you know that arena, people just look up to the doctor and they assume, well, they must know, they are doctors and whatever they tell me, I have to comply.  
	So that's the mentality out there.  
	Pediatricians, to include you, you need to know you have a lot of power.  And you need to be very careful in how you use that.  
	Especially speaking on a cultural level.  
	My mother is from Spain.  
	So as far as her culture goes, they believe whatever the doctor says.  There's no deviating from that.  
	It's just part of their culture.  And it's the mentality of the doctor is always right.  
	So it has that supremacy.  Actually the pediatrician wants to say something.  
(CHUCKLES).
	>> I'm also a Chapter Champion in Illinois.  I don't know if I said that.  
	So the point of me and others like me is to teach pediatricians who don't know anything about this.  
	So I mean there are studies on what pediatricians know, what they are comfortable with.  It's abysmal.  And that was years and years ago, the survey.  It's not good.  
	So I mean, we just punt.  We just punt the information.  You know, if you don't know about something, you say, okay, go here.  And ask them.  Well, we went to an audiologist in New Jersey.  And that didn't work very well.  
	So you know it's important for pediatricians to learn.  And they don't -- they are expected to know things, right?  Because you go in there with a Deaf kid, you say, what am I supposed to do with my Deaf kid?  Pediatricians don't know.  And they are not taught.  They are not -- very little residency teaching about it.  Maybe one rotation, one week, one month.  Very little exposure.  
	So you got -- the hand they are dealt is pretty week.  
	And then they are trying to convey information to other people.  And the other people say, oh, they don't know what they are talking about.  Well, yeah, they don't know what they are talking about.
	>> Right, you can't expect medical professionals to know everything.  I wish.  I would like to doctor to actually be upfront with that and say, I don't know.  You should perhaps meet a Deaf person.  Maybe go to  an agency that has Deaf professionals there.  That's what I would like the doctors to actually say to the families of Deaf children.  
	You know how sometimes when a Deaf individual goes to a restaurant and they ask for the menu and the hostess or the waiter will bring you the menu in Braille, we have all seen that.  I kind of feel the same thing is happening in the doctor's office.  They referred me to an eye doctor if you can imagine and I'm thinking I don't need to see an eye doctor.  It happened with my grandbaby, as well.  My grandbaby is Deaf and they were referred to an ophthalmologist.  So those misunderstandings that need to be clarified and understood.  
	It's not fair to the family to have the neutrality and have that framework because the family is going through this journey and oftentimes they feel alone and they go online to get the information.  And a lot of times they feel isolated.  
	They struggle with their health.  And really, they don't -- their mental health.  
	And that's not necessary.  
	In this specific study, these families were assertive.  And were asked, why do you have more assertiveness.  And they worked with what they had.  But they took it upon themselves to figure things out.  
	Really they are lucky.  Because it wasn't overlooked, they were able to get this information.  Because they were motivated, they didn't accept that one answer.  And they wanted to learn.  
	So again, it can -- it comes from a place of privilege.  
	Families, you know, we're trying to make it day to day.  They are trying to put food on the table.  They are working maybe three, four jobs to make ends meet.  
	Keep that in mind.  
	They don't have time to do this research.  It is a privilege.  There's a lot of families out there that don't have the same means as those families that can find the time to research.  
	Do you want to talk about this Laura?  
	>> LAUREN PETERSEN:  Well, this is just data, as mentioned, it's very limited.  
	There were only 30 -- 34 families.  And we are hoping to do more.  And get more surveys out.  
	Now, these families were all families that went to schools that utilized ASL and English for the bilingual approach for reading and writing.  
	We need to expand this study for sure.  So again, our data is limited.  
	Now in conclusion, here you go.  
	I would love just things to be easy for families and have that guidance and have that support and get this information.  They are just inundated, they are confused they don't know which way to go.  It would just be nice if that information was provided to them in a different way.  And ultimately they want their child to be successful and be literate.  
	Here is more literature information.  And it talks about the benefits of sign language with your Deaf or hard-of-hearing child's development.  This should not be hard to find.  But ironically, it is.  
	And Laura?  
	>> LAUREN PETERSEN:  We talked about that.  You saw that from the quotes, from the parents with the comments that professionals made.  
	Oh, they will be fine with a cochlear.  Get the cochlear, you'll be good to go.  
	So the audiologist -- the idea is to get the information from the medical profession and that they need to kind of change their paradigm in regards to this.  
	And I wanted to include that you need to know the hearing level.  They may say oh you hear too much.  You don't need sign language.  We need to end that.  
	And sometimes there's this attitude of oh it's just a mild hearing loss so you don't need a special program for that.  But you need to really look at the child and see what they will get in terms of accessibility and where they will benefit to ensure -- which gives them access to ensuring -- to ensure equality.  
	California is the only state that has two Deaf co-coordinators for HRSA.  Yes.  Two.  California.  That's it.  That is it.  Come on, we need more.  So anybody interested in joining the team, we have made a huge impact because more and more hearing families want to have information relative to both.  
	They don't want to have to choose one.  
	So we have families coming to a Deaf school that has a huge Deaf program.  Things are shifting.  And we want that to happen here.  Sherry, another colleague of mine, as well as myself, we're extremely excited that change is happening.  But we need to figure out, you know, what are we going to do next.  
	I see somebody's hand.  It looks as though somebody has a question.  
	Could we get the microphone over to that participant?  
	>> I was curious as to your success or how you helped mitigate the audist mindset of medical community.  
	>> We provide the training.  In addition to exposing them to Deaf adults.  We also invite them to come to our School for the Deaf and just get a tour and see how it all works.  
	And what they hear about the schools for the Deaf, there's negative connotations.  It's nothing a pro -- there's no information that's positive.  
	So it's good for them to come and see.  But with their own two eyes what the Deaf school has.  
	And also, I work with my hearing allies.  
	We can't do this alone.  So I will get ahold of Laura and other hearing allies so we can navigate the system.  
	I never do this alone.  
	That's my approach.  
	And here, what do we do moving forward?  
	ASL resources should be ready and available both in the educational system and the medical system.  
	Because it's really hard to find ASL resources.  And it shouldn't be.  You know, and they are looking for cochlear implants or researching that, that's so easy to come by whereas the ASL resources are minimal.  
	We have to immediately get them -- get Deaf professionals to the families.  
	This is a research that was published in 2013.  
	The Joint Committee on Infant Hearing recommended Deaf professionals to be active participants in the Early Hearing Detection and Intervention programs.  At national and local levels.  
	Last but not least, California, like Laura just talked about, it has a Deaf-run state-wide EHDI Program LEAD-K.  LEAD-K families.  
	Thank you.  Any questions?  We have about two minutes.  You know what, we have time for one more question, right here, no over here in the back.  No right here in the front.  Sorry about that.  Were you planning on signing or talking.  Okay.  I'll tell you what, hold on why don't you come on up to the front.  
	>> I want to know if your PowerPoint is uploaded to the EHDI website.
	>> Yes, you will have access to our PowerPoint.  Yeah, I did that yesterday.  So it might be a little bit late.  
	But okay the question back here.
	>> So just a quick reflection on how many audiologists were recommending amplification, it was only 50%.  To me that's remarkable that audiologists are only recommending amplification 50% of the time.  That's an improvement.  That's giving families time.
	>> Good point.
	>> Getting more information.  
	So I think that's great.
	>> That's great.  That's seeing it in a positive light.  Thank you.  
	I really appreciate seeing different perspectives.  So I appreciate that.  
	>> I was just reflecting on what we said here and listened to today.  And I think a lot of it has to do with the structure of your system from the top from failed Newborn Hearing Screening back to follow-up screening and then where those children, once they are diagnosed, if you're following the 1-3-6 guidelines from the Joint Commission of infant hearing, then if your system is such that in our state the first point of contact for all of our Deaf babies and their families are from the Deaf school.  And they start teaching those babies if it's a parent choice.  And I do think you have to remain unbiased when it comes to sharing that information and it definitely is a parent choice and because of that program, they are given unbiased information.  But they do sign with almost every one of our babies early on once they are identified.  
	So I just wanted to make that statement.  I understand what you were presenting and what your 34 participants told you.  But I do think it has to do with the structure of the system you have in place and with your EHDI Program and everything working in conjunction.  Together we even have an Advisory Council where pediatricians sit on it.  And they meet three and four times a year.  And those pediatricians take it back to other pediatricians.  
	So just wanted to share some of those ideas that might can help other states.
	>> I appreciate it.  I think we're out of time.  Last one.
	>> I'll make it super quick I'm from the same state as Ms. Margaret Barry and just coming here and talking to other states and seeing what their process looks like, realizing that we have the Deaf school as first contact really does make a huge difference for these families because they do come back from the audiologists, they retain half the information whether the audiologist said it or not, they didn't retain it, they grieve it, they are confused so having the Deaf school whether it's a Deaf person or not someone from LSD be first contact really does make a huge difference.
	>> Absolutely.  
	If you have questions, feel free to come on up front.  
	They are from Louisiana, the people that just commented.  
	Great, thank you.  Thank you, everyone.  Thank you all for coming.