REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"Kansas Language Assessment Program"
Room:  Vienna
Tuesday, March 5, 2019
3:45 ‑ 4:45 p.m.  CT

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>> Okay.  I think it is officially 1:45 (sic) on this computer thing, so we're going to go with it.
Hi, thank you so much for coming and I appreciate you spending the time with us to learn about the Kansas Assessment Program.  My name is Erin Schuweiler and I am the Sound START coordinator at the Kansas School for the Deaf.  That is a fancy title for I coordinate the birth to three program out of our Kansas School for the Deaf outreach team.
And this is my co‑presenter over here.  
>> ELIZABETH SCHARDINE:  Hello, my name is Liz Schardine and I am the coordinate for the newborn hearing screening program for the state of Kansas.  
>> ERIN SCHUWEILER:  So I'm going to kind of take the first several slides, Liz is going to jump in here towards the end to share a little bit about how our collaboration has helped with the Language Assessment Program in Kansas.
And we do have the hour, and so I'm going to be open to having questions, but I will say sometimes in this presentation that I've done around our state, sometimes the question gets answered as we go through it, so if I say hold on, it just means I already have a plan to answer it, but feel free, we'll have to kind of ‑‑ either I'll have to repeat the question, because I don't think that mic travels very well, or you're welcome to come up here or whatever the case may be.
So, we are ‑‑ we're the second state to pass a bill that was out of the grassroots campaign of the LEAD‑K and rolling up the sleeve and getting involved with that, two people out of the state of Kansas and did some hustling to get this bill passed.  I would say it was formerly called SB323, if that name is familiar to you, it's familiar to the Kansas people, but it was in 2016 when it finally got brought kind of up to the Legislature, I will say that there was some opposition to the bill originally, but fortunately our Legislature ‑‑ or our legislators on that Education Committee had the foresight to say hey, stakeholders let's get you together, we would like you to pass this because we think it's a good idea, but let's get the language such that all the stakeholders feel really comfortable passing the bill, and they allowed a couple stakeholders to have a couple days to meet and get together and tweak the language a little bit to get this bill passed, so that was really exciting, to make sure that those stakeholders were involved and get that collaborative process up and running.
So like I said, the bill was passed in 2016, we were right behind California in getting that bill passed.
So the purpose of our bill is obviously we know that early language is super important.  I am preaching to the choir here.  So the purpose of our bill was to assess, monitor, and track the language milestones of our children deaf and hard of hearing ages birth through eight.  It also asks us to provide annual assessments at a minimum to our children ages birth through eight in both ASL and/or English and they also added terminology of visual supplements as a piece of that bill, and that was through that collaborative process, and then to provide annual report data for statewide information.
We were very fortunate, the language of the bill said all children who are deaf and hard of hearing and so the Advisory Committee took that to heart and said all means all and so we really planned it around what did early intervention say was all children who are deaf and hard of hearing?  And for our state that meant all, severe, mild, anything that was a hearing loss was considered to be all, so that will present us with some challenges in the future for our kids that don't qualify for any services, but as you'll see, we've kind of tried to attack that head on.
So we really pushed through for that because we thought what a great opportunity to assess all of our children.
All right.  So the intended outcomes, of course, was to identify any gaps in delays in language, we want to make sure we catch those early so we can provide appropriate recommendations for intervention.
We want our children to have commiserate language level with their hearing peers.
And then just kind of that concept of being kindergarten ready, following those state standards for language and being ready for kindergarten.
We all know you can't just slap a hearing aid on or a cochlear implant on our kids and just expect everything to be super great; that they need additional supports and services, and so this was a really great way to provide evidence to what kinds of support and services and help us really guide our intervention.
We are very excited about the possibilities, that it doesn't just end with the language assessment, but that it really drives the process for early intervention and for our school‑aged children.
So the bill started out with asking an Advisory Committee to really be tasked with developing the Language Assessment Program, to really figure out how are we going to do this?  What assessments are we going to use?  All of the pieces that really go into that.
The Advisory Committee was actually coordinated by the Kansas Commission For Deaf and Hard of Hearing, KCDHH, there were 16 members on the Advisory Committee and there was a wide range of participants.  A parent whose child uses ASL, a parent who uses English, teachers of the deaf both using bilingual approach, speech‑language pathologist, someone from the task force, we had a part C coordinator, SoundBeginnings coordinator, newborn screening coordinator, they really, really ensured all the key stakeholders were in place and at the table and they knew it would take call of us to pull this together and make a really great plan.
We started meeting in October 2016.  Our final report was submitted to the Legislature, the Senate Education Committee at the end of January of 2018, so it was fast and furious, I'm not going to lie [chuckles].  We divided into four subcommittees to kind of handle all the tasks, the mandates in the law were several, mandates we had to answer to, and so we divided into four subcommittees.
I meant to look this morning exactly how many hours, but over 100 hours at least in meetings alone, not counting all the additional outside work that was done by these 16 people.
So it was an amazing year, an amazing amount of work.
And the collaboration that happened within this committee was impressive.
So, I'll let you know, I was a little nervous.  So I kind of believed that families can make great decisions and that we need to give them all this information, but at the same time I was walking in with a bunch of people that I didn't know how they would feel, what their perspective was.
We did a great job of coming together and really sharing our feelings, being respectful of where we disagreed, but really finding that common ground.
It was really not as hard as all, not hard at all, it was really great, because we all had that common goal:  That we want our children to have language, and that's it.
And so when we were coming in with that awesome task of saying how can we help our children have language, everybody was on board and at the table.  So it was great.
So, we have this beautiful report.  And if you go to www.ksdeaf.org, it is somewhere on that website, I can't tell you where, look up Language Assessment Program on that website [chuckles], the report is on there, some of the protocols I will be talking about are also on there and you're welcome to look through.
It has our report to the Legislative Committee, is has the four subcommittee reports, final reports of all the information that we kind of thought through and discussed and collaborated around.  It also has all of our documents that we developed as part of that Advisory Committee, so it's a really great document.
But most of my time today I'm just going to spend telling you what we decided to do, what we planned to do within that Advisory Committee, how we were going to implement a Language Assessment Program.
And I will ‑‑ I call it Language Assessment Program for deaf and hearing, LAP‑DHH and I will say that to make it faster.
So the first thing that we did, the first task we did was develop milestones for both ASL and English and so we decided as a committee to create a document that identifies those relevant language milestones from birth all the way up to age eight.
We wanted it all in one nice little handy dandy sheet, to be able to use with professionals, to be able to share with parents.
The second task we had was to determine the list of recommended assessments that we would use to identify the child's language level and also to identify any gaps or delays.
And then how often are we going to test, what does that look like?
So those were kind of the three big pieces that the first kind of subcommittee really tackled.
So, on the EHDI website, in my presentation, there is an actual ‑‑ the document of milestones is on there.  I'm not going to show it to you, because it's, you know, tiny writing and it won't help you.
But let me give you, this is a picture of what it kind of looks like on every page.
We have it at every three months, all the way up to age three, every six months from three to five, five to eight is every year, it looks just like this, each page has a different age.
But essentially what we came down to when we were discussing this is language is language is language, so all languages develop very similarly.  We found research around that, we searched for that, because we really realize there were some things that happen in ASL that looked exactly like things that happen in English, and so what we decided to do was to say at the top of the page were all the things that generally happen in both languages, that we could find research and evidence that said these things happen in both languages, and then you'll see on this sheet, if you'll look it up, there's a check box that says A for ASL and E for English so we can check which language they have those milestones in.
What we wanted to note is we know that some things develop in both languages.
And in the bottom of the sheet shows all the specific skills in ASL and English so that we can check those off as well.
So the committee had a lot of discussion around the parts of language, the pieces of language, what were going to be the most important parts.  What did we think would really get at the gaps and delays in language for our kids.  What did we really think was the most necessary that we needed to assess?
And so we came down to receptive language, our understanding of language, expressive, our ability to output language, and in that social communication piece, because we all know pragmatics are one of our biggest challenges for our kids who are deaf and hard of hearing.
So we talked about things about speech intelligibility and in speech as well and articulation and what are we going to do with those pieces?
What we came down to was if our kids with communicate and understand vocabulary, can express those vocabulary and have those communications, all the other pieces would fill themselves in.
So we decided specifically not to focus on those.
Now, I will say we did put some intelligibility pieces into this document because we thought at some point someone needs to be able to understand them, so it doesn't matter if I have 700 words, if no one can understand any of the words I say in neither ASL or English, we might have a problem, so at some point we said yeah, intelligibility becomes important and we mark that in there and we said these are the pieces we felt would give our kids what they needed.
So then we looked at what are all the assessments that we could use?  And I will at the you, in the report there is a long list of all the assessments that we looked at.
We literally reached out to whoever we could think of and said tell us, what do you use?  What's happening?
We realized, first of all, for our Language Assessment Program, one assessment was not going to be enough.  We felt like there was no one assessment that would look at both ASL and English that would get at the gaps in delays that we're looking at, that comprehensive piece of language.  We said there isn't one.  So what are we going to do?
So, this is kind of the list that we came down to and I'll show you in a second kind of when all of those are going to happen.
But this is kind of the list of the assessments that we kind of said if we could do these, we felt like that would give us a really good picture.
Now, this doesn't limit school districts from doing additional assessments.  They are free to do it.  In fact, we encourage it, because again, I was just in a session on new guidelines for deaf education, they made that specific comment, sometimes we don't test enough, we don't get in‑depth enough and of course we want them to do more testing and get as in‑depth they can possibly get it so our kids have the best outcomes, and if we can get answers to the school districts on the early intervention about this, that would be really helpful to our kids.
You'll notice language samples are on there and we felt language samples is a great way to get a good idea of the language piece and how children are using language.
Again, if I have 17,000 nouns and 0 verb, I'm not using language very well and a language sample would really get at that.
And then we also address the issue of our children with additional disabilities and felt like the communication matrix was a great way to get at those kids who may not have language that would ever get up to our possible hearing peers.
So here's going to ‑‑ I'm going to kind of go through these but I'm not going to spend a ton of time, so here's the protocol that we have from birth to three and you'll see every six months we're going to do something and they said they gave us a minimum of annual and we said that's not enough, we want every six months, we want a peek at that kid and my providers that work with me, we were peeking at the kids a lot and we felt like, yeah, we can handle that every six months, so we're going to look at it.
And I think we've already started tweaking this and I should have started by saying we developed, this Advisory Committee developed all of this in theory and while it sounds like there's a super great plan, we knew that the theory would eventually be reality and we would have to shift some stuff, so we have already decided we wanted to do the MacArthur and CASLLS more often and we decided this monitoring didn't give us the best picture, especially in the vocabulary, so we're already tweaking, but that was our original plan.
So you'll see, we're going to try and line these up with our initial IFSPs, our annual dates and six months dates.
I will tell you again, it's not happening yet, because theory practices two different things but we think we can shift.
Right now we're trying to pilot this and get a feel for what's going on so we threw timelines out the window a little bit to kind of get a good base under us for that.
So this, another great thing that the Advisory Committee said was we need a great way to help families transition from part C to part B.
Oh, question?  
>> [Away from microphone and unable to clearly hear]. 
>> Hold on. 
>> ERIN SCHUWEILER:  Oh, you have a mic.  Yay!  I was worried there was no mic we could pass. 
>> I was curious.  In the state of Kansas, does the state EI program, like, in Illinois we have certain assessments that are approved in Illinois that you have to use one of those assessments when go to to do an IFSP.  
Did you guys have that trouble with those assessments you chose?  Were some of them not part of the state program?  And then how did you work with that?  
>> ERIN SCHUWEILER:  So, that is a great question.  So, yeah, our state is very similar, we have, you know, assessments that are approved to be used as part of the IFSP process.
Fortunately our part C director was involved in this process and she ‑‑ we also I think were fortunate because she, herself, had a child with a disability, not hearing loss, but she didn't think there was anything wrong with additional testing, so we didn't really even run into an issue.
And it is listed in the evaluation, the permission form they have to sign for their FSP, ongoing progress monitoring, something like that, or some sort of language around that and we took that and said there you go, it's ongoing, progress monitoring, we're using assessments to do so, and luckily we had great relationships with part C and they said you want to do that, we said great, things.
Yeah, no problems.
Thanks for that question.
Okay.  So transition, we were super excited that transition is one of my positions, soapboxes, whatever you want to call it, I really feel like there's a lot of challenges around getting those families out of early intervention and into part B.  I think they need a lot of support around that, and so we felt like how could we support that.
So we decided ‑‑ so we kind of had to divide the team, so there's kind of our birth to three team that would be assessments and we'll have a three to eight team that will do assessments and so we said let's combine those teams around the transition, so A, the family knows who will be on the team and who is doing the assessment and that three to eight team can help inform the school district about this kid that is coming in, and so we're really piloting around how can we best kind of communicate all these pieces, but we're going to try to work together to update these assessments and everyone know what's going on with this kid and meets with the family and it's a really nice ‑‑ that will be their annual person, right, their solid person that's in their life every year for the next five years. 
So we're excited to see how that plays out and how we can best kind of tweak that to really help the families.
So this is our three to five protocol.  As you can see, it will change a little bit, the MacArthur is now replaced by the EVT and PPVT and we're adding sample languages in there.
Still can use the MacArthur, we know that not all kids will be at the same level and we'll have some flexibility and it will be up to the LAP‑DHH to look at what's best and this is what we're hoping is required.  We're requiring it, but there has to be a little bit of flexibility when we're talking vocabulary.
The CASLLS and VCSL span the field and CASLLS goes all the way up to eight and it's beautiful and the other goes up to five and it at least follows the child to five and we felt that was really great because we kind of pass it along and we kind of replace with vocabulary tests as they go up.
And then as their entry into kindergarten, we add the Bracken.
And I think there's a question?  
>> Hey, can I explain what you mean for the Peabody picture vocabulary test, you have English A and B?  
>> ERIN SCHUWEILER:  Yes, I totally skipped over that.
So at KSD, we do use the PPVT and EVT and ASL and we know it's not super great, but when that's all you have, that's what we do.
And so we decided for our kids that are using both ASL and English, we're going to need to do something vocabulary‑wise and we're going to take form A for ASL and form B for English and they're separate languages and test them separately.  That's our plan now and that's a theory and we'll see what happens.
That's a great question.
Same with MacArthur, we did look at the ASL version of MacArthur but we felt there wasn't enough vocabulary on there for all of our kids, what they should know, and we'll do similar to what Colorado does is use the MacArthur with both languages and in ASL we know we can't score it so we're just going to use it as a marker for how many vocabulary they have and then in English we'll be able to use the scoring.
Yeah?  
>> [Away from microphone and unable to clearly hear]. 
>> ERIN SCHUWEILER:  That's okay.  That's all right.  We all need our steps, we just gets more today. 
>> Do you not score those either then?  
>> ERIN SCHUWEILER:  That's a great question for the SLP.  I'm a birth to three world and I'm not super familiar, but yes, if you can reach out to us, we can answer that question way better.
I think we've been talking that EVT and PPVT for our kids in ASL, so I don't know.
I'll just say I don't know, there we go [chuckles].
Okay.  Any other questions about the assessments?  Oh, let me get back, this is the last round, the five to eight one.
So the ASL AI is on here.  We are having a little bit of trouble kind of getting that figured out, so luckily we have some time because none of our ‑‑ as you'll see, we're going to phase this in so we have a little bit of time to figure out our five to eight kids, but that's assessment out of, I can't remember, I'm totally blanking.  Maybe it will come to me.  Anyway.....
So we've kind of been working with them on and off cost‑wise what it would cost to get that assessment but it's newish in assessing ASL, so we'll see what happens.
Okay.  Our LAP‑DHH specialist, so the second task we had, the first task was around the assessments and milestones and the second round of mandates was around the evaluators or the people doing the assessments.
So we were tasked with actually finding two different people.  We were tasked with finding people who could do the evaluations and also with people that could advocate for the child and the family.
And so as we kind of had discussions around that, we decided that really could be one person, so that person could do the assessments and then provide the recommendations to the IEP team, the 504 team, SIT team, whatever team you want to have, they could do that all in one person and that would save us from having two different people to pull into this situation and as it is we're going to add another person into their live and that's kind of what we ended up with.
So, we had some ‑‑ a lot of discussions with the Kansas Speech and Hearing Association, KSHA, a lot of discussion around that because we wanted to be very careful that we did not step into the bounds of speech‑language pathologists and their role and scope of practice although we believed that teachers of the deaf who had that knowledge around deaf and hard of hearing and around assessments could do these assessments.
None of these assessments were SLP only or teacher of the deaf, none of these, we were careful about that as well, that we could have a variety of people, because what we wanted was experts in the field of doing the assessment.  If it's a SLP, fantastic, or teacher of the deaf, fantastic, we wanted them knowledgeable with deaf and hard of hearing and we worked closely with KSHA and being advocate for the child and we came up with LAP‑DHH specialists is the title we will be using for those particular people, so they can be teachers of the deaf, speech‑language pathologist or educators and they have to have knowledge of working with children who are deaf and hard of hearing and if they are using ASL or even the signing exact English, cued speech, any of those pieces, they need to be fluid in that system and/or language.
So we kind of went with best practice that says using an interpreter for assessments is not great and we said okay, that means we have a strong SEE population in Kansas and on the western side of Kansas and that means when we get to those particular areas, we're going to have to find someone who's fluent in signing exact English for that.
Oh, I lost her.  Maybe I'll just repeat your question or.... the mic ‑‑ here we go.
Sorry, I was about to run back there but probably the presenter should not run. 
[Laughter]. 
>> I was going to run back there.  
>> I was just going to ask, how do you assess fluency in ASL?  Do you use ASL PI or ‑‑ 
>> ERIN SCHUWEILER:  That's a great question.  We were vague‑ish in our recommendation and we said we're going with ASL PI level four, but we also left it with because there's a lot of us that, you know, maybe, like, three plus‑ish who are certainly have been in the field enough enough to be qualified.
Right now we're going to strictly follow the ASL PI level four, so we'll see how that translates.
But we left the language a little bit vague to give us a little bit of leeway that the person in charge of the program could really make the decision about that fluency level.
But, yeah, I think we may settle on just the level four, you must be a level four to do those ASL assessments.
That's a great question.
We are still a little bit unsure about C and how we're going to assess fluency in that and I think there's some assessments out there that will look at that and we'll see.  That one is yet to come because we haven't had to cross that bridge yet, but we will, we know it's coming and we'll figure it out.
Great question.  Thank you.  Yeah?  
>> This might be a little more of a reality question than a theory question, so stop me if it's not appropriate. 
>> ERIN SCHUWEILER:  No problem. 
>> I'm wondering about funding.  So how are you paying the specialists?  Are they contracting with a particular state department?
And also I'm wondering about how they are actually accessing the children?  So if an assessment comes up and it's, you know, the next six months but it's in June or July when they're not in school, how are you actually getting to those kids at that time point?  
>> ERIN SCHUWEILER:  Great.  The first question I'm going to tell you to hold, but I will answer it, it's in the slides, I can totally picture the slides and I'm going to hold you on that one.
The second question, you know, again, we're pretty new into piloting so we're not sure.  Right now it's all lining up beautifully, so we tested those children in, like, October, or November, so it will be about, you know, August when we're ready to assess again.
But yeah, that is an interesting question and I don't think we know the answer to.
So, it's a good one, though, it's one they've thought about and said huh, I wonder what we're going to do with that.  Like, early intervention will be great, we see those kids year round and will be able to assess them, no problem.  Our school age will be an interesting dynamic. 
>> I just wanted to say we copied a ton of the content from your bill for the Georgia bill that got passed last May, so this is so awesome, you led the way for us in Georgia, so thank you so much. 
>> ERIN SCHUWEILER:  Woo‑hoo!  Fantastic!  That's awesome.
All right.  So our LAP‑DHH specialist, we intended this to be a collaborative process with our early intervention teams so Sound START birth to three out of KSD, we collaborate with the early intervention network and we go out with those providers, sometimes as a secondary support and sometimes we go out by ourselves and sometimes it depends on the part of the state we're in, but it's intended to be a very collaborative process.
I'm kind of jumping ahead, but I'll jump ahead and jump back, the Kansas School for the Deaf has been tasked with securing and training and really administering this LAP‑DHH program, and then so because of that, we're going to need to be very collaborative with our people.  We know that us going out twice a year, we don't know that kid at all, so in early intervention we know the kid very well, it will be easy and part of a ‑‑ most of the kids, we don't see all of them as often as we like, but for most of the early intervention piece, we feel like will be very reflective and active in our assessments, but we know when we get into those older ages and don't have an ongoing relationship with that child, that will be challenging for us to say hey, we're going to do all those assessments on you, I hope you're ready, that child may be tired or sick that day and we will work with the providers working with that child to make sure the assessments are accurate and reflective of what's going on in that child's live.
The LAP‑DHH specialist is responsible for determining and if the protocol for assessments is not appropriate for that child, what is appropriate for that child at that time and date.
They will also be responsible for presenting the results and explain the results.
One of the pieces in the Advisory Committee decided on is we really wanted parents to hear the information first, so we are going to make every effort to make sure the family gets the report first, that we go through the results of the report with them first before we hit an IEP meeting or an IFSP meeting, because what we want is to not have that family blind‑sided when they walk into the meetings and we want them to know up front here's what we're going to say and recommend and we feel that will help them be better advocates for their child, too, and that's one of our big goals the family will be fully informed before walking into any meeting.
They will also be tasked writing comprehensive and unbiased reports, including placement options, least restrictive environment, et cetera, all of those pieces, we really expect them to be well informed about all of those and really articulate those pieces to the families and to the schools or early intervention networks.
And then just need to be well versed in the unique needs of our kids who are deaf and hard of hearing.
Reporting.  So I did already kind of share and once we complete the assessments, we're going to do ‑‑ the reports are just going to be an annual thing, the six month follow‑up will be more of an informal process just to kind of have a conversation with the child's team, have a conversation with the parent about how things are going, are they making adequate progress.  If not, giving them some tips and ideas in the meantime.
The reports will be on an annual basis.  Again I talked about sharing with the parents first, then with the team.
And then summary data, KSD will handle the data and commit it to the Kansas Deaf and Hard of Hearing as they are the ones that report it to the Legislature.
Another piece of the Advisory Committee that was not actually in the law was that we really wanted to make sure our stakeholders continue to remain informed about the process and aware of what's happening.  And so we decided to create kind of a stakeholders council that be meets a couple times a year to make sure they're well aware of the pieces going on, Department of Ed, Department of Health and Environment, Liz is one of the people on that, parents, Deaf community members, we need their help, first of all, in disseminating information and getting the word out there, but we also want to have a check for ourselves.  That we're kind of meeting the spirit of what that law was intended to do and that we're really meeting the needs of the families that we're working with.
And so that was a piece that we felt like well, it wasn't really in the law, but this is what we think should happen, so we've already pulled that stakeholders council together and already had a couple of meetings and it was actually really productive already, they have great ideas and it's nice to be held accountable in a positive way to the work that we are going to do, that we are doing, and that we will do.
So, implementation.  So we created all of these beautiful things in theory and then we said okay, how are we going to do this?
The Advisory Committee decided that Kansas School for the Deaf was the best place to house this program and to run this program, and obviously we're thrilled by that, we are honored to be in charge of this program, we're really excited about it.
So the Kansas School for the Deaf will be in charge of securing and training all of the specialists.
This program will be available to every single school district, every early intervention program eventually, we'll talk about that in phasing it in.
However, if the school district that wants to do the assessments themselves, we ask that they meet the same qualifications of our LAP‑DHH specialists and they go through the same training.
So they can't just say well, I'm going to do those assessments.  No, we need the same training so they understand the same things that our LAP‑DHH specialists do and they would have to submit the report data to us in the specified way.
And then our goal is to try not to add much to the plates of our early intervention providers, our school districts, because we already know, I mean, we're tasked too, we have a lot going on on our plates too and we didn't want to say okay, here you go, do the ones on top of the ones you already do, plus your IEP goals and all these other things, we knew that wasn't going to work and nobody would buy into that.
What we said is hey, if we kind of drive the process, you collaborate with us, we feel like that will be a better plan, and so we're hoping that that will prove out to be true.
So, since we're mostly rolling it out in part C, it's true, they're super appreciative of the information and super appreciative that I and my team are responsible for saying it's time and I'm bringing the assessments and permission forms, they couldn't be more thrilled to not even have to think about it.  I just show up and say here's what we're doing today, so.....
At this point there's no cost to anyone, and I know, you're saying, what in the world?  I'm getting there.
So KSD, Louann Baron is super supportive of this program and heavily involved in the Advisory Committee and KSD would be willing to absorb the cost for the first two years in phasing it in and the staff we had could get started with the program.  After the first two years, there's no way [chuckles], but at least for the first two years she was willing to absorb the cost in‑house and we have tremendous house from SoundBeginnings which she will talk about here in a couple more slides, so I don't want to steal her thunder, but we definitely couldn't have done it without her.
KSD is in the process of asking for an increase in funding and looking for creative ways to get funding, because sometimes us asking for a funding out of the state general fund when we don't really have more kids on campus is gonna be hard to justify, and so KCDHH is also extremely supportive and we're kind of collaborating together to kind of figure out where are some creative ways that we could get some additional funding that would support this program long‑term.
So, you're not going to be able to read this, but we kind of tried to estimate costs within the Advisory Committee, because we said okay, if you're going to implement this program, how much might it cost?  We don't even know.  And of course, again, in theory, practice, might be two different things, but we did our best, so looking at what are the costs of the assessment tools, the trainings, a database that we would need to kind of collect all this information, salaries, and program development.
So for the first two years, we thought it would cost about $200,000, so, you know, do the math, for three, four, and five, it's not going to be cheap, for sure.
So, in the midst of our process in the Advisory Committee, we thought wouldn't it be nice to know how many children we're talking about ages birth to eight?  That would be a really nice number to know, what are we talking about?  100 kids?  1,000 kids?  We don't know.
So thankfully SoundBeginnings has really great data, she has worked very, very hard to catch all of those kids ages birth to three who are deaf and hard of hearing and so I asked her, I said hey, do you think you could pull the numbers on the kids that were identified in the past eight years from, I don't know, it was 2017 at that time, so 2000 ‑‑ what is that, I can't do math up here when I'm trying to talk, 2009 to 2017, eight years, how many kids do we have?  873 is the number she gave us, we're, like, oh!  We're supposed to start 2018 and we can't do 873 kids with the staff we currently have and we said okay, perhaps we should phase this in and we also thought hey, we kind of want to do this right the first time.  We don't want to, like, throw everything at it and realize this does not work and have to go back and fix it and we thought man, if we thought small, what is that?  Think big, start small, move fast, we kind of did that, I feel like, we decided to start small.
So the last, from January to July did a lot of developing protocol ‑‑ or permission slips, evaluation forms, releases of information, gathering the assessments, educating, we've done as many presentations as people would let us come to, you know, we kind of begged, like, can we just come talk about this for five minutes, you know, trying to disseminate the information and making people aware they're not blind‑sided because this is kind of a big huge deal and we didn't want them to be scared.
So we've been doing lots of education around our state, and then July 2018, we started with all the children that were seen through our Sound START program and we thought that was an easy way, we have our hands on these kids, we're already seeing them, these are assessments we kind of use already and we're going to formalize the process and get going.
And so we did pilot that.
I will tell you [chuckles], don't ask me how 16 of us couldn't think of this, but we could not think about the fact that all of these children will turn three.  I think we were, like, birth to three, we're just going to do those kids and we didn't process those kids are all going to turn three and we'll have to follow them, so that's just our funny, like, huh, how did we not think about that in [chuckles].
So as the children are turning three, we get to pilot all of the next steps of that program and that's been a fun challenge for us, because I think our 3‑18 is, like, cool, we're off the hook for that, they're not, they're on the hook.  By the way, I have a kid turning three in about two months and that's been an interesting challenge for us.
But this year we're just focusing on those kids though and transition with them and follow them up to the age of eight and start getting some nice data pretty quick here.
And starting next year, we're going to do all of our Sound START children and add all of our children housed on our KSD campus‑based, center‑based program as well as any kid that we are involved with through our outreach program, so the 3‑18 is going to kind of handle those kids.
And then it's just going to kind of snowball from there and add the birth to three children, anyone Sound START is not currently seeing, although the way we're heading, we might be seeing those kids by then, which hopefully, yay, 3‑8, and on, and in five years we hope to have the funding and all of those children under our belt.
We know we're going to miss children and we have this long list of what ifs and what abouts that we know we have to address.  Like what are about the kids identified late?  How do we find those kids?  We don't know yet.  We'll hope the school districts are helpful in helping us find that and find our program to be super helpful and want to help us, but we don't know.
We'll have to work with audiologists and do some collaborative work to figure that out.  What are we going to do with the kids that don't speak English?  We are already addressing that, we have kids who speak Spanish and other languages with that, we're not quite sure what to do with them and eventually we're thinking English is the primary language in our school system, so English may be the most appropriate way to kind of assess.  We'll just know that the numbers will be kind of weird in that birth to three because we encourage the families to use their native language and to build on their native language and we never discourage that, so we're not sure.  That one's a challenge that we haven't quite figured out how to address.
Luckily one of my workers is bilingual in Spanish and that's awesome and we'll have that kind of data.
We're not sure how that fits into what we have to report to the state, we'll figure that out.
Kids with multiple disabilities, obviously we have the communication matrix but we're not sure if that's enough so we have to figure out if it is or not.  A lot of little pieces we have to figure out.
So if you have a what if question, I'm guessing it might be on our list of what ifs?  What abouts?  Feel free to ask them, but some of it may be.... I don't know yet, but we're still trying to work that out.
And now I'm going to let Liz kind of talk a little bit about our collaborative piece.  
[Pause].  
>> ELIZABETH SCHARDINE:  So I only get one slide. 
[Laughter]. 
>> ERIN SCHUWEILER:  I told her she could have as many as she wanted!  
>> ELIZABETH SCHARDINE:  Just teasing.  So about the same time that the bill was passed, we received the CDC grant and if you know the CDC grant, part of that was to enhance the EHDI information system, and I thought well, what a better way for me to continue to get outcome data, then to say hey, let's partner, and do this together.
Plus I already have all of the information anyways, and how easy would that be to write an MOA between two state entities and be able to push that data over to the LAP program and already have that information already accessible to them?  So that's what we did.  We wrote it into the grant.  Erin and I sat down many times and wrote out an MOA.
And so our information system is through a program called Welligent and I don't think there's many states that has this information system, but what will happen is ‑‑ well, first of all, we get all of our information from the birth certificate and then we track, of course, those kids into early intervention and we know if they have an IFSP date, we know typically if they've been fit with hearing aids.
So what will happen is once those children are identified, it will automatically be pushed over into the LAP system.
The system that they have created or in the process of creating is under the same program or under the same company Welligent.  It's a different, ours is a newborn hearing screening and theirs is a new assessment and it's a transition, once I mark a box that this baby is identified a hearing loss, it will automatically go over into their system, so we're pretty excited about that.
And like I said, in the MOA is, you know, they will take on the responsibility of maintaining their own database, but they have to share the information with me.
So it's a win‑win situation for us.  
>> ERIN SCHUWEILER:  So I think that speaks really highly of the amount of collaboration that Kansas has put into this bill, into the LAP program in and of itself, so that Liz had the foresight to say hey, do you think that you need database?  And I said hey, I know we're going to need a database [chuckles], and so it's just going to be amazing, because again, those 653 children, well whatever number it is now, you know, we will have direct access to those children and when we're at a stage when we add all birth to three children, we'll have all of those kids' names, we'll know where they live, that sounds kind of scary [chuckles], but I mean it in a very positive way, and reach out to the program and say I know you have a kid who is deaf or hard of hearing in your network and we would love to get involved and help.
And we hope this guides all kinds of really great things, we don't get to stop with just the Language Assessment Program, that it really, really expands into much better supports.
We're already thinking so big in our outreach team about wow, what could this possibly do for us?  This could help us figure out what services and supports our school districts need to be much better at serving these children, so we're so excited about all the possibilities, and a little daunting and a little overwhelmed and all of those pieces all together, but it's super great. 
>> ELIZABETH SCHARDINE:  I want to add one piece to that too.  Also in the state of Kansas, it is mandated that audiologists report babies who are identified or children zero to three who are identified with hearing loss, so we will catch those late identified at least up until three, and the other thing is I'm also an audiologist, so all of the pediatric audiologists I pretty much know, so I think that's a good shoo‑in and a way to get us to help identify a child. 
>> ERIN SCHUWEILER:  Yeah, it's great, we've had conversation with the Department of Education and how they can help us and pull with us and we're still working some of those things out and I only anticipate things getting better.
I'm gonna.... oop, I'm frozen.... 
[Pause]. 
>> ERIN SCHUWEILER:  Okay, well ‑‑ 
>> Somebody said to click the PowerPoint down at the bottom.  And then to open it back up and it would.... 
>> ERIN SCHUWEILER:  Oh, there we are.  All right.
So I've already kind of talked about this, for part C, everything is done in collaboration and we'll provide all of the pieces that they need so they don't have to have the protocols or any of it, we'll just do that for them.
Same with part C ‑‑ or part B.
Again, we're going to be collaborating with all the teams, so if they're not on an IEP, I've already had discussion with we already have one family that we don't think will qualify for services and I was, like, I guess we'll just come to your home then [chuckles], we'll see you next year, so we're mandated to check those kids and I'm, like, sweet, we'll come in and check in, we didn't think about that, but why not, we can go to your house, if they don't require in preschool, but how exciting is that, if they show gaps in delays, hey, call your school and we'll get you services so we're super excited about that.
So our staff and specialists will provide all of the pieces that the school district leaves and work collaboratively with the SLP that's involved, with the teacher of the deaf or whoever that person is, whatever team that person has or child has or doesn't have, we will be working with them as collaboratively as we possibly can.
Again, we want it to be a win‑win, you know, we're not going to be coming in there to say well, you should be doing this and this and this, we're going to say here's your recommendations and let that team figure out what to do with all of those pieces.
And then, so progress, I want to make sure I get to that.  So, again, we started July 2018, we have five specialists that we have trained, we had 2½ days worth of training, which FYI is not enough!  Even for ‑‑ I mean, we were people that already knew these assessments, so.... but we really needed more training ‑‑ oops, sorry ‑‑ like we needed more training around being consistent with reporting, being consistent with assessments, we want to make sure we're very reliable, that all of our assessments are very valid, that if I go out and then I get hit by a bus, that somebody else will go out and get the same kind of information and that, we know we will need more training. 
>> [Away from microphone and unable to clearly hear]. 
>> ERIN SCHUWEILER:  Oh, microphone.  
>> Did you train all five specialists and a cohort together?  
>> ERIN SCHUWEILER:  Yes.  
>> And was it a consecutive 2½ days or broken apart?  
>> ERIN SCHUWEILER:  Consecutive. 
>> And did you do things like inner related liability and did you look at, like, are we scoring the same response from the child the same way?  
>> ERIN SCHUWEILER:  Yes, which is how we discovered we didn't do enough. 
[Laughter]. 
>> Exactly, okay.  That's always hard to get that.
And I had one more question about the data sharing.  Did you have any issues around HIPAA and FERPA compliance when you're looking at sharing data between, you know, part C and part B or the medical home versus the educational home?  
>> ERIN SCHUWEILER:  Right, so we developed a permission and release of information for that very specific purpose so that we could ‑‑ and we have, like, standardly checked for Department of Ed, KCDHH, Kansas School for the Deaf, part C, and SoundBeginnings, because all of those people are going to need the data, so yes, we thought exactly that because we said hey, parents should know their data is going to go be, yes, shooting off everywhere.
And we certainly, you know, while Liz is pushing us data, we are going to need permission from families to test them, so if they do not give us permission, there's nothing we're going to be able to do with that data that she pushes to us.
There were several of us, me included, that felt very, very strongly that parents should be fully informed and well versed in what was happening to their child and with their child, and so I wasn't the only one, so.... which was thankful, but we very strongly said nope, we've got to have permission, so every year we will get permission, even though technically we could have one permission slip and run it eight years, we said nope, we want it every year from these parents, they can opt out every time, they get a choice on the languages to assess and we want the parents involved in that process.
So the results, if my last five minutes, so we in the fall, we had to give our first report in January, so data stopped around December so we could have time to pull stuff together, because we have a zero database right now, we're in the process of working on it thankfully with money to fund it, it won't be up and running until next August, we had to stop at some point to do the manual kind of collecting of data for the report.
So we assessed 20 children, which I know doesn't seem like very many, but when you're piloting a program, I'll tell you that's kind of a lot!  [Chuckles].
You'll see better numbers and if I present next year or at some point, an annual report will be up and you will see better numbers next year.
Did assess 20 children, eight assessed in more than one language.  We assessed ‑‑ let me pull this because I had this written down so I wouldn't forget all the important data.
Okay.  So we assessed ‑‑ and more than one language meant ASL, English, or Spanish.  So we had three languages that we assessed.
The 10 children that were assessed in ASL, we had 9 that did not meet their milestones.
The 16 that were assessed in English, 11 did not meet their milestones.
And the one child that was assessed in Spanish did not.
And then we had a child that we assessed with the communication matrix, and we had about 30% of our children did meet their milestones in one, at least one language, and then 70% who did not.
So, we're a little bit sad [chuckles], but, you know, it's 20 children, so that kind of, you know, we'll have to see how that information bears out.
But I'm certain, I mean, for us in Sound START, it's already kind of driving what are we going to do differently and better and how can we improve our outcomes for these children.
So, we're anxious to see.  We're still kind of furiously testing to get all of these kids tested before we have to do our next report next year so I'm really excited to see what those numbers are like, I feel like that will be a better reflection of what's happening with our kids.
And I think, you know, I've talk about a lot of these pieces that we're going to need a lot of collaboration and we're going to have to take our theory and put it into practice, so we are open to tweaking, we're willing to admit our mistakes, we're willing to say that didn't work at all and what are we going to do differently and we're hoping our transparency is super welcome to all of the people working with us and they will be willing to take this ride with us and figure out really great things for our kids that are deaf and hard of hearing.
We all have this.  But this is my ‑‑ this is the motto that we have adopted for our Language Assessment Program.  We feel like this really reflects what we feel, what we believe, and that those kids, if they have language, there's nothing they can't do.
And so we've said that's our motto, that's what we're going to say about our things, it's on all of our permission forms, anything, anywhere we can put it, and so you know, that's what our goal is on our providers, too, but we're big family people.
So I have two minutes is what I've been told, so any last questions?
And of course I'll be here afterwards, so.... 
[Pause]. 
>> I'm wondering if you can talk about for your specialist, your LAP specialist, you said it might be a SLP or teacher of the deaf, it's whoever has that knowledge and the qualification and language, and SLP four or above and you said you have to be able to apply for the position and what do you look at besides the sign language skill. 
>> ERIN SCHUWEILER:  Good question.  That's a ‑‑ fortunately we don't know, and that's part of the outreach team and does value on a regular basis and it is ingrained in our soul and so we haven't addressed that yet, we have a job description and I'm not sure that's on the website and if you e‑mail me, I'm happy to share it out, it might actually be in the report too, I'm not sure.  We have a job description already written for those people and it talks about those requirements.
We are probably going to have to define what does that mean, knowledge and experience for people that are deaf and hard of hearing. 
>> That's my question.  I don't know.  
>> ERIN SCHUWEILER:  When we figure it out, I will be happy to share, I'm not afraid to share any of this, and ASL PI four, that's easy‑peasy but I learned and I didn't realize, I'm early childhood special ed but I had a lot of knowledge and skillset that other people in my same licensure didn't have, same with SLPs, you know, they are very skilled in doing language assessments, I'm not questioning that, but that knowledge and skillset around deaf and hard of hearing, we learn that across the state that is not something that they bring to the table always, and so having that magic piece will be key.
Okay.  
>> We have time for just one more question, and then if anybody else has questions, at the end you can always stay and talk to Erin.  
>> ERIN SCHUWEILER:  All right.  Magic last question. 
>> So I came a little late, so you may have already answered this, how do you determine which ‑‑ are you giving all of the students all of the assessments or do you determine whichever language modality they're using, that's the one you give?  
>> ERIN SCHUWEILER:  That's a fantastic question and I feel bad I didn't address it.
No, again, that's up to the LAP‑DHH specialist to figure out but that's in collaboration with the family and if the family is not using ASL, that's a no brainer, we won't assess ASL because they will get a zero and what does that help us with?  Nothing.  So parent driven, partly, you know, if that parent says, I mean, but usually parents that are working on ASL and English, they want their kid assessed in both, so, yeah, it's up to the LAP‑DHH specialist to tease out which assessments we will use, but we're not forcing them to be tested in both because that would be silly, so.... 
>> And so I also imagine that you had discussions among the group of the pros and cons of having a special team going in and doing the assessments as opposed to the staff already working. 
>> ERIN SCHUWEILER:  Yes, we did have deep discussions about that.  We felt like the key piece for us, the reason why we ended up saying an outside person was we wanted that person to freely be able to give the recommendations that were needed and we felt like we have run into too many times the staff and the school district feels limited and feels stuck in their ability to give the recommendations they know they need to give because of administrative level, yes, all of the pieces, the administration, the whoever is above them is limiting what they had to say, and so we decided that outweighed the negative of us being a specialist that comes in twice a year and assesses the child, so that's where that collaborate piece is going to be super important, to make sure are we getting information that's reflective of what those providers see on a regular basis, this is what I got, and I've done that with my people, I'm, like, here's what I got, does that sound like that kid?  Or here's the pieces I didn't see today, tell me, do you see those pieces?  And if they see them, I trust them and we go on.
But yes, we decided that having an outside person that can just ‑‑ and we left it to we're going to give the recommendation, it is up to the team to do what they're going to do with that recommendation.
So we're not dictating anything on the school district or the early intervention program, we're saying here's what we think would be best practice for this kid, individual child.  You do what you want with that information but we wanted to freely say here's what we think freely happens, here are some recommendations that we think need to happen.
If the school district doesn't do it, there's nothing to enforce that.  We hope some day, but there isn't, but we're hoping it creates a much better collaborate process now.
I have to stop because she's going to really kill me if I don't. 
[Laughter]. 
>> ERIN SCHUWEILER:  So thank you so much for coming.  I will definitely be here if you want to talk about it. 
[Applause].
[End of session].

** Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings. **