Idaho Community Collaboration Project

ROUGHLY EDITED COPY

2017 EHDI CONFERENCE

HANOVER B

IDAHO COMMUNITY COLLABORATION PROJECT

February 28, 2017, 11:00 A.M.

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ALTERNATIVE COMMUNICATION SERVICES, LLC

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This is being provided in a rough-draft format. Remote CART, Communication Access Realtime Translation, is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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GABRIEL BARGEN: Hello, thank you. Can you hear me? Wonderful. My name is Gabriel Bargen, and this is KristinaBlaiser, and we're both assistant professors at Idaho StateUniversity, and let's see if I've got the button right. As adisclaimer, we do receive funds from grants from Idaho andOberkotter, and we're both members of the Idaho Sound Beginningsadvisory board. So you have been disclaimed.

The goal of my information, we'll lead with informationabout the strengths and weaknesses with the current referralprocesses on the kiddos on the newborn hearing screening and goover resources that are used and recommended by providers forthe state of Idaho for the kiddos.

As a part of the 2007 JCIH position statement, we wantto make sure that children who are Deaf and hard of hearing andtheir parents have access to time and coordinated enter into theintervention programs. A part of that is to identify thesekiddos, first of all, and, unfortunately, Idaho doesn't havelegislation regarding newborn hearing screening, butfortunately, we have a wonderful EHDI program, and most of ourhospitals and doctors choose to require a newborn hearingscreening. 98%, right? Ish. As far as kiddos that arescreening for newborn -- that are involved in the newbornscreening program. So we have a great program.

And in addition to that, per best practice, we do followthe 1-3-6 guidelines recommended by JCIH.

So hopefully everyone is aware that if we do have delays inthis system as far as getting into early intervention after achild is identified as having hearing loss, there's going to bea delay in their developmental process, if we don't have asmooth transition to that process. So as a part of that, Kristyand I wanted to target these factors that could delay thatprocess.

In order to do that, we received a grant to start an IdahoCommunity Collaboration Project, and you're going to hear aboutthat in the next half hour. So I'll introduce that, and thenDr. Blaiser will introduce it more in the next half hour. As apart of this community collaboration, we have all of theseentities involved with us. Idaho Educational Services For theDeaf and Blind, the Infant Toddler Program in Idaho, and thenSound Beginnings Program, which is our EHDI program in Idaho,and additionally St. Luke's, Idaho, Hearing and Balance System,and they're one of the largest providers in Idaho for hearingand balance services for children. And Idaho, the university,with myself and Dr. Blaiser.

So as a part of that community collaboration, we createdtwo surveys, a parent survey and a provider survey, and the goalof those was to get the perspectives from the families and theproviders on how these services are going.

And so this presentation is going to focus on the providersurvey and the results from that.

So just a little bit about what we received in the results. We distributed quite a few surveys, via e-mail and also we sentsnail mail as well to try to catch some of the individuals whoweren't quite technically savvy. We did get a pretty goodresponse rate of over 14% and the breakdown was 22 audiologists,83 speech-language pathologist and one who identified as anearly education interventionalist. We did have representativesfrom all of Idaho's seven regions, which was kind of important. We wanted a voice from the whole state, and we were able to getthat.

And this is the breakdown of that indication. And you cankind of tell where the population is within Idaho, so area 4,that's where the majority of the population is within Idaho. And then the second area, the five audiologists and 14 SLPs fromarea 6. So kind of gives you an idea of where our populationlies.

So we did ask where the area of specialization was, becausewhen we set up the surveys, we targeted those who work withkids, but we weren't exactly sure who we were sending it to, sowe asked where the area of specialty was, so it was -- themajority of them did work with kiddos who are Deaf and hard ofhearing and their families. If they indicated they did not,then we did not include them in the rest of the questions thatwere specifically targeted to that. So we focused our target,the individuals that we were targeting to just with thosequestions, to individuals who worked with kids who are Deaf andhard of hearing. So this is the SLP and this is theaudiologist. And obviously, the audiologist, most of them, ifnot all of them, worked with the kiddos who were Deaf and hardof hearing. I think there was one audiologist who did not. Andthe other thing we asked, the years of experience that theproviders had, when they were trained, that kind of information. As you can see, the majority of the responders had over 15 yearsof experience, which is exciting to know how much experiencethese providers have that are in Idaho.

Okay. So of the 106 that responded, 66 indicated they doprovide direct services to children who are Deaf and hard ofhearing, and again, here's the breakdown of those individuals. So we did not have representation for region 2 for individualsthat worked with Deaf and hard of hearing, and I can probablysay with confidence that those one of the areas we have the mostdifficulties with in Idaho working with the Deaf and hard ofhearing population.

Another question we asked was how often do you work withthese kiddos, like one individual in particular, who is Deaf andhard of hearing, and for audiologist, the average, they see themabout every six months, which is typical of an audiologist. ForSLPs, every week, 50%. Another third saw them once a week andwe did have another percentage that saw them two or three timesa month.

So the next part we asked them about was where theyreceived their referrals from, and then also where they madereferrals to, so trying to work on that interprofessionalcollaboration, who are they working with. For audiologists,they received most from Idaho Sound Beginnings, our EHDIprogram. Also, about a third from pediatricians within Idaho. As far as making referrals, all did make referrals, which is agood thing, because they're not able to provide all the servicesfor the kiddos. And this is a breakdown and most refer to theInfant and Toddler Program and the School for the Deaf andblind, again, speech language pathology and genetics and you cango down from there where they make their referrals.

For speech-language pathologists, most referred theirreferrals for the kiddos from the doctor themselves and about aquarter received them from the Infant Toddler Program and notmade referrals for the kiddos because they felt that somebodyelse was making the referrals so they didn't need to make them,which is probably a story for another time, but this is anindication of where they make referrals to. Several refer toaudiology and again to Idaho School for the Deaf and Blind andgoes down from there.

The one I thought was interesting were the genetics andthey said we would never refer to a geneticist, and I don't knowif you attended the seminars about genetics yesterday, butthat's an important part of hearing and hopefully the SLPs willget more educated about that.

So as far as what this site is indicating, so you make thereferrals. If you make the referrals, do you follow up withthem. So it's great that they make referrals, but do familiesnot follow through with them. And one way to check with that isto follow up with them the next time you see them and say, didyou go to that appointment that we recommended you go to. Andso the audiologists -- this is all together, so any of theresponders, they said that, yes, they did follow up with thefamily, as far as did you make -- or go to that appointment, butfollowing up with the providers, only a little over half of theresponders provided, did my family follow up with you.

As far as referring to support groups within Idaho, thesewere the list here is indicating which support groups that theproviders referred to. Most of them are referred to Hands andVoices, and again, a lot of them are referring to the Idaho --that includes the Idaho Sound Beginnings as well as the InfantToddler Program, and many are referring to head start and earlyhead start. We do have the early head start as well as the headstart program. Not many are referring to the parents andteachers program. And then therefore several others thatthey're referring to which are essentially private groups withinIdaho that are local to those areas.

One of the questions we also asked were if the providerswere aware of hearing aid funding sources for the family. Asyou know, that's a difficult thing to do is buy those hearingaids, and they're expensive. Overall, most of the audiologistswere aware of those funding sources and referred families whennecessary.

There were a few SLPs, but then 1 out of 5SLPs indicatedthat they were not aware of any funding sources for hearing aidswhich indicates to us that we need to do some education withthose employers to let them know where those sources are withinIdaho.

A few the final questions we asked are, how comfortable areyou doing counseling, as well as talking about the financialneed of hearing aids, and this first slide is looking at howcomfortable are audiologists at providing counseling to thesefamilies of the children that they're diagnosing and overall,the audiologists were pretty comfortable, in comparison to thespeech-language pathologists. They weren't as comfortable. Andthat points, again, to some of the educational needs of thestate.

And we asked them how comfortable they were talking aboutthe needs of the hearing aids, and you compare them, theaudiologists are much more comfortable as doing that and they doit as well. Most of the SLPs never talk about the needs of thehearing aids, which is understandable. They might assume thatothers are taking care of that. But they see the kids mostoften, so it would behoove them to have that informationnecessary and talk about it if necessary.

And then the bottom slide there talks about how comfortablethey are, and, again, audiologists are more comfortable talkingwith the financial needs with parents as compared to thespeech-language pathologists.

Okay. The next part of our survey talks about what kind ofresources do you need as a professional within Idaho to helpserve these families and their kiddos who are Deaf and hard ofhearing. So the respondents indicated they would like morehandouts available to give the parents of these kiddos, to letthem know about the different resources that are available inIdaho. They also ask for financial resources to, again, let thefamilies know about what's available. They asked for somesupport services to the family. So support from the state toprovide education, to let them know what's available, and how toprovide this information to families.

And then they also talked about better communicationbetween the providers, which, obviously, is pretty important,when we're working with kiddos, and want to be able to talk toeach other and let each other know what's going on to betterprovide services to that family and their kiddos.

The last part, we asked the participants what they thoughtwere some highlights and some low lights of the current programswithin the state of Idaho. So we specifically asked them,what's the best part of the early intervention programs forfamilies and children who are Deaf and hard of hearing withinIdaho. And the parts they said were good, they indicated thatwe have some timely intervention going, which is good. That wasone of the whole goals of the survey was to determine, how arewe doing with that transition between diagnosis and enteringinto the early intervention services. So early detection ofhearing loss and early referrals are being made to initiatethose services this.

They also indicated that they felt like the hearing aidswere being placed on those kiddos as soon as possible whenneeded. They felt we were doing a good job providing parentswith resources, and they also thought there was a goodcollaboration between Idaho School for the Deaf and Blind andthe Infant Toddler Program, which is a good thing. And servicein general.

Some of the things they indicated could be improved upon,shock, there were a few more of these -- they thought we neededimprovement on access to resources, increased public awarenessof the available community programs that we have within Idaho,increased funding, and availability of services and resources. And then also increased access for all children to all therapydisciplines. And this is referring to the whole state. So ifyou remember, back to the beginning of this talk, we have theheavily populated areas. Kiddos who are in that area, they haveaccess to a lot of those services. But if we go to some of themore frontier regions of the state of Idaho, they don't haveaccess to those services. Trying to figure out how can we getthat access to those individuals when needed. Need work onthat.

Additional, better communication and follow-up betweenpatients and providers and reducing the time between thereferral and the first visit, and this is referring to, a kiddoshas been diagnosed with hearing loss, they're referred to thatearly intervention program and there seems to be a significanttime lapse, not all across the regions. We have some waitinglists in Idaho for kiddos who need speech and language services. We just don't have enough providers to work with all the kiddosacross the state. And waiting time. Kind of the same thing.

And then more education for healthcare providers and otherinvolved professionals. So getting some training out there. And I do think we have a lot of opportunities in Idaho, butthose providers might not be aware of all the opportunities thatare out there. So together, we need to get them educated towhat is available.

All right. So the future directions, based on the resultfrom this provider survey specifically, we noted that we need todevelop some information that is specific to Idaho about what wehave and that's available, and then get that out to theprofessionals, specifically, the new professionals that comeinto Idaho to let them know, here's our system, and in order tobest serve those families and kiddos, we need to use the systemto the best of its ability. So letting them know about where dothey make referrals, how do they get into that system and makeit work for them.

Also, providing the early intervention personnel withinformation and resources about hearing aids themselves and alsohearing aids for tension. That was one of the things parentswere concerned about, how do we keep these hearing aids on thekids, and sharing that with providers so they can share it withparents.

Increase collaboration through providers, and we'll tellyou about that in just a moment. And then access to telehealthfor the rural communities to get them the services they haveavailable within Idaho, and again, we're working on a grantcurrently to try to improve those telehelp services in Idaho andhopefully we'll get those resources to anyone who wants them.

And this is just indicating who the collaborators were,from Sound Beginnings, we had Brian Shakespeare, we also hadrepresentation from the ISTD with Paula Mason and Jill Muir, andfrom the Infant Toddler Program we had Anna Smith, and ErikaBlanchard was represented, and also, Susie Jones, who works withkiddos who are Deaf and hard of hearing within the state, andalso, Andrea Amestoy, who is a parent of two kids with hearingloss, so we are well represented. And we had graduate studentsand they did a great job.

(Question off mic).

The question was, what is the involvement of teachers ofthe Deaf for early intervention services, and I would say it'shuge in Idaho. What's our number, right under 50%? I'm tryingto vision our poster. Parents indicated that's their primaryprovider. Unfortunately, we didn't have a lot of themparticipate in this survey. Only one indicated they were anearly interventionist, and we're assuming that person was ateacher of the Deaf, but we didn't have a lot of participation. So that might be a goal for us, to target that population with aspecific survey that says, this is for you guys. Tell us whatyou're doing. Yeah. Good question. Are there any otherquestions? That's where we are on this. Thanks for coming. We're going to end early, then.

(Applause.)

(Break.)

KRISTINA BLAISER: Okay. We're going to get started. I'm Kristina Blaiser, and this is Gabriel Bargen, and we're fromIdaho State University, and we're going to talk about communitycollaborations. Not all of you are from Idaho, so we wanted totalk about a model that we could share with other states. Howmany of you are parents? Great. Audiologists? Great. Speechlanguage pathologists? I like all of you administrators? StateEHDI coordinator. Sorry. I thought of those. Administrators.