REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"1‑3‑6 Plus:  
Embedding Parent Support In Follow‑Up"
Room:  Vienna
Tuesday, March 5, 2019
10:15 ‑ 10:40 a.m. CT

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

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>> Hi, I'm Lylis Olsen and this is Najwa and we're going to talk about embedding parent support for early intervention.
This first slide is for me.  We're quoting the phrase 1‑3‑6 plus.  We've been living 1‑3‑6 for quite a few years now and we have made a lot of progress in our 1‑3‑6 goals and like Elizabeth said in her last presentation, we weren't thinking about that "plus" and we didn't put parents in the equation which was silly of us and not smart, so we've learned a lot since then and we really want to make sure that 1‑3‑6 isn't 1‑3‑6 without that "plus" and so we believe in that kind of collectively, if the whole group of us here in Arizona believes that parents should have that opportunity to receive support from parents who have been through it, who understand the EHDI system and understand deafness and hard of hearing and we've had kind of a unique opportunity over the years.
So today we're going to talk a little bit about the EAR Foundation of Arizona where I work and where Najwa also works, she has multiple hats and we'll talk about things that haven't been successful, I have a belief we need to share what doesn't work so you don't have to recreate what doesn't work and you can learn from our experiences.
And not all of our efforts were successful.
We're also going to share the current method of adding the plus to 1‑3‑6, how it's embedded and how to institutionalize it so it doesn't go away, even if we go away, and we have some case study information on the benefits of the "plus" and we'll give you a better idea of who we are.
We'll save all of the questions towards the end, but we have a break after this so you have plenty of times to ask all of your questions, because we'll hang around as long as you want to to get your questions answered.
If you go online, our PowerPoint is online and we have a handout and flow chart that you can download and also has the letter that goes out to parents, so there's a copy of that so you can see that as well.
Okay.  So I'll talk about who I am and Najwa will talk about Hands & Voices and where we've been.
The EAR Foundation actually started in Arizona in 1996 and I came to Arizona in 1994, and I came to run the School hearing And Vision Screening Program at the Department of Health services and they said hey, we have a program that doesn't have any funding and doesn't do anything and I said I would be happy to take a job doing hearing and vision ‑‑ I know nothing about vision ‑‑ but what I really wanted to do was do that newborn hearing screening and we were doing about 7% at that time.
In '96 when the EAR Foundation of Arizona showed up, we had the opportunity to really establish new programs, it was a brand new organization, so we were able to do kind of whatever we wanted, and eventually I moved over to consulting with them in 2000.
We had a really early opportunity, because I run a program that buys hearing aids for kids and we had a parent that we'd helped that was unemployed, had moved, had a new baby, we bought him hearing aids for their kid because they qualified financially, and then they all got jobs and they made money and they kind of paid us back and they made this donation and we didn't quite know what to do with it.
So we actually used this donation to take myself and a parent to one of the Hands & Voices, one of the really early parent leadership and we looked at what could we do to build that parent.
So we've had parent leadership, we've had a parent component to our program since really early in the program.
The EAR Foundation is small.  We have the HRSA grant, so the universal newborn hearing screening grant, we hold that grant, we're one of the only non‑profits that holds the HRSA grant and that gives us some options to be very flexible.  That's also the grant that supports the parent‑to‑parent support.  We're required by that grant to provide 25% of our funding goes to those parents, I think we're about 30% now, aren't we?  [Laughs].  Some states have trouble spending our money, we don't have that problem, we're doing fine. 
[Laughter]. 
>> LYLIS OLSEN:  We also hold the contract to do the newborn hearing screening program and all of you that are here for follow‑up, hold your hand up.  Yay!  These are Arizona and three of our five from follow‑up are here and they're also parents and that's very, very important to our entire program.  It's important to this, it's important to follow‑up, it's really important for that parent‑to‑parent piece and we have that unique opportunity where we have both of those things.
We also embedded in our contract, so when we wrote a contract for the Department of Health Services for follow‑up, we actually wrote in there that part of it was a requirement that we offer parent‑to‑parent support, so some of that speaks towards embedding it and institutionalizing what we're doing so it remains, regardless of who's running the program.
So I'll turn it over to Naj.  
>> NAJWA GHATTAS:  And as Lylis said, we have a great partnership and our active has been active since 2007 in Arizona and we have a Guide By Your Side program that's been there since 2010.  It's been up and down, some years better than others, but it has been there since 2010.
And when I joined the board in 2014, our Guide By Your Side program was on life support, it was almost non‑existent, and so when I stepped in, I became the Guide By Your Side coordinator because no one else was doing it, I had no idea what I was doing, but it helped get this program back on its feet and running.
And as most of you know, Hands & Voices is a parent‑driven organization that is unbiased towards the type of support we provide those families.
Also, you know, we use the same standardized training that they use across the country from headquarters for that Guide By Your Side program so it's nice to have that level of support as well.
I am actually also the co‑Executive Director for Hands & Voices with Heidi, who is in the audience, and one of the follow‑up coordinators at the EAR Foundation on behalf of the Department of Health Services, so I'm kind of tied into everything just a little bit, which also puts us in a really unique situation that is helpful for our parents.
So, let me get into that.
So why 1‑3‑6 plus is important to us, I'll tell you from a parent perspective and Lylis will tell you from a program perspective.
But the theme all week has been parent support, wanting support from other parents, and so that's one of the reasons why we feel this is really important, so that every time you talk to someone, all research is showing is that parents want to hear other parents, they want families to meet other families, kids to interact with other kids.
Our medical system in Arizona, I'm sure as well as other states, is fragmented and difficult to get through, and so those parents who are just finding out their child has a hearing loss might not know what to do, and so we're there to help them with insurance, referrals, therapists, audiologists, just to navigate the system.
On our board we've had speech‑language pathologists, audiologists, and connections that would help the parents.
And building that parent engagement and that leadership and that's how I ended up here [chuckles].  I mean, I had no idea this is where I would be standing one day.  I have a degree in accounting and teaching and this is not what I was planning, so.....
Just sharing those stories, just supporting each other, all of it is so important to our system and we've seen so many great results from what we're doing right now, and so.....
And the last piece is the ongoing support.  So these families eventually age out of early intervention before they're three and then they go into the school system.
They still need support.  They still need to understand the transitions.  They don't know what their rights are with IEPs, we can provide all of that training and resources and we're excited to do that.
So Lylis will kind of tell you from a program perspective.  
>> LYLIS OLSEN:  I think my perspective is much more boring, but it's tied to the funding and it's worthwhile.
And some of the things we've struggled with is making sure that kids get into early intervention and so we bring Hands & Voices in and Guide By Your Side in at the point where kids are diagnosed so that we have support here's why intervention is important and here's that next step to make sure you don't miss that.
We have a gap, and Annie is in the audience right now, she can talk more about it than I can, but we have kind of a disconnect with our early intervention.  Arizona hasn't been a state that has provided consistent early intervention to those people that have ‑‑ those kids that have a unilateral hearing loss.
We're working on changing that, but it's a little confusing to families, and so right now there just isn't that consistent support, but we know that it's important, and so we don't want to lose those, we want to provide those families with some level of support.  And this allows us to kind of bridge that gap.
It's also one of our HRSA objectives, and here's the boring part where it comes in with the whole funding business, is one of our objectives is parent‑to‑parent support.  Another objective is our deaf and hard‑of‑hearing role models and building that parent leadership engagement.  You can't build that if you haven't identified parents and gotten them engaged, it's a Catch‑22 for a lot of states where it's, like, we don't know who the parents are, so how do we build that?
Well, as we get them engaged really early, by the time their kids are 2, 3, 4, 5‑years‑old, they're ready to give back, and Naj will talk more about that in her very last slide.
It's included in our follow‑up contract, so it's something that we do with every family, so every family gets this opportunity.
And it meets one of our joint committees.  JCIH is what we use as our gold standard and, you know, EHDI systems need to be family centered, they need to be ‑‑ we need to work with families directly.  It's very easy as a pediatric audiologist, and I think by nature I would like to tell you all what to do, but what we've learned is that's the wrong approach and it doesn't work.
So, what we've learned is that we need to be listening to parents, we need to be engaging with parents, parents need to be driving the system.
And actually if any of you guys were here for Elizabeth's, that's my next thing, is getting peers to drive the system.  I want these young adults who have been through the system, I can hardly wait for Samantha and Matthew and Isabella to grow up so that they can take over for us.  And I'm just really excited about that.  So.... 
>> NAJWA GHATTAS:  So like I said, you know, I have a background in accounting and teaching and why am I here?  Why am I standing here?  Well, this is why.
I have three children, two of them, my two younger children were born profoundly deaf, and they had very different journeys, from screening to diagnosis to parent support.
And that's why I know what we're doing makes a difference because personally I've been through it both ways, with the support and without the support, and the difference it made was immense.
So, Samantha's journey, on the left there, you know, she's 10 now and Matthew is 8 now, so these are very old pictures of the surgeries and they're in speech therapy here.  She didn't pass the newborn hearing screening, told it was fluid, diagnosed early on with a profound sensorineural hearing loss, you know, the whole thing, fitted with the hearing aids, cochlear implants at one, speech therapy at four months, had early intervention in the house but no parent support, didn't get involved with any groups, other families, just did what we had to do.
Matthew's journey, passed one year in the hospital, passed with a follow‑up ABR, but, you know, having a kid with a hearing loss, I started recognizing some signs when he was two‑months‑old, that he could not hear, I was, like, there's no way this kid can hear.
So insisted on a sedated ABR and had him back in and found out he also had the profound hearing loss built from a recessive gene we carry and that's when I started getting involved with Hands & Voices, meeting other families, parents‑to‑parents, getting that support that I didn't have the first time around.
And realizing oh, okay, this is going to be okay and seeing these older kids and just really kind of seeing that light at the end of the tunnel that I didn't see the first time around.
Very different experience.
And they are both very different [laughs] when it comes to their implants.  Samantha wears her implants, Matthew throws his.  That's a whole different story.
We're going to talk about what didn't work in the past and how we ended up here.  So before I started with Hands & Voices, they had a postcard program where they made these postcards to hand out to families in the hospital when they found out their child didn't pass the newborn hearing screening.  So it had the information on it, contact information, parent guide information.
And it was passed out very, very little response; almost none, really, minimal to none.
And then they tried the audiologist referrals, giving the brochures to all of the diagnostic centers and main places where they were diagnosing these children and handing them out to the families.  I was one of the families that received the brochure but, you know, it was just papers within papers and gets lost.  Also very limited response.
I spoke to one of our original parent guide, she said she maybe had 2‑3 families a year referred and that's who she was helping.
So then when I came in, like I said, in 2014, and our program was about to be gone, I had called headquarters, I tried to find out how to fix that, and I talked to the Department of Health Services, renegotiated a contract with them and got them to give us back that contract and started working directly with them.
So, now we were finding the families because we had direct knowledge of who those families were and access to their database.
And we were finding those families.  However, we didn't really have a good system in place.  Nothing was standardized, there was no policy and procedures in place, we weren't really following HIPAA.  I mean, it was just figuring it out as I went along.
We'd find out about these kids, we'd assign them to the parent guides, I never made a first contact call.  It was just better, but not working right [chuckles].
So, we said this isn't working either.
So then we decided.... I know this is hard to see, this is kind of ‑‑ 
>> LYLIS OLSEN:  But this is in your handout, you can download it. 
>> NAJWA GHATTAS:  Yeah, on the website, there is two handouts, and on the second handout we send this letter out to every family diagnosed with a hearing loss, unilateral or bilateral, so this is just a flow chart of what we do now.
So at the top, that's once a child is confirmed deaf or hard of hearing but our consulting audiologist.  Then we are handed that information and so we ‑‑ as follow‑up, yes, thank you, we do really draw a line between me as a follow‑up person and me as a Guide By Your Side person.
We never make that initial contact as Guide By Your Side because we shouldn't really have that information.  And we want to have parent consent to refer them to that program.
So, we contact them from our follow‑up.  And it can be any one of the follow‑up staff.  We tend to use the parents just because we feel like that's a more natural connection, but if we disappeared tomorrow, anyone from follow‑up can make that phone call.
So we call and talk to the families.  Make sure they're enrolled in early intervention.  If they're not, we find out where the disconnect is and get that circled back together.
And then we tell them about the parent support program called Guide By Your Side, ask them if they're interested in having a parent guide, contact them.  If they say yes, we tell them that okay, we're going to send you an e‑mail or a text message, but you need to consent in writing that you are giving us permission so that we can share that information with the Guide By Your Side program.
We share their name, date of birth, degree of hearing loss, and a contact number, and we let them know that's what we're sharing.
So, once we receive that consent, I, as the follow‑up person, e‑mail myself as a Guide By Your Side person. 
[Laughter]. 
>> NAJWA GHATTAS:  And say this family has consented so that if I am not in that position, anybody can do that.
And then we would take that information and assign it to a parent guide through a secure drive that we use.  We use G‑suite, the Google G‑suite and we all have access to that drive, everything stays in there, and each parent guide has their own little spreadsheet in there.  I go ahead and put that parent's information on that spreadsheet and they make that contact and they carry on from there.
But I did ‑‑ one thing I did forget is once they're diagnosed, we automatically generate and send that letter to those families, just in case we don't get in contact with them on the phone, then at least they've received a letter and it has our contact information in there.
So they're able to call us and say oh, I heard about this program, so they'll call Guide By Your Side directly, usually.
And then if we don't get ahold of them, we'll eventually discontinue.  Follow‑up, we'll try for at least six months.
And then some families, like, if they don't send back the consent right away, we'll just try again in a week or two weeks.  If they eventually just don't respond, then they don't respond.  We might try again but at some point we just discontinue that follow‑up.
So, anything you want to add here?  Yes?  
>> LYLIS OLSEN:  Yeah, there's some real advantages to using follow‑up people.  And I think that this is part of what we ran into early on in some of the problems is our follow‑up parents, when they happen ‑‑ more than half of the staff at the EAR Foundation is parents, all of our programs have lots of parents in them, for follow‑up staff, they're used to making cold calls, they're used to making difficult calls to parents.  That's what they do all day.
And so they're very comfortable and easy about it.
And as it was not easy the first week for any of them.  I think that most of them it took a little while to say oh, yeah, okay, this is what I'm doing, this is what I'm going to say, everybody's got scripts in front of them for the first few weeks, but now they're comfortable making the cold calls and talking to parents.
And sometimes they actually already have relationships with these parents, because they've talked them through, getting back for the second screen, getting them into that diagnostic evaluation.
This is just a continuation of that, so it's kind of a natural progression, and I think that's really made a difference.
And I think the other difference is we've put some parameters around it.  We have expectations for who's going to be called, how often they're going to be called, what you're going to say, so all of those standards and those policies and procedures and flow charts and all of that boring stuff, it helps, it helps put some boundaries and some expectations around it that I think have been really useful.
And I think that we're really looking at collecting more both qualitative and quantitative.
This is the next step is to really look at are we meeting parents' expectations?  Are we meeting the expectations of subgroups?
Sonya's in the room and I love to call people out, Sonya's really taken the lead on our Hispanic families, our Latino families and how we can reach out to them.
We have some Hispanic guides, some Spanish‑speaking, native Spanish‑speaking guides and I think we're really making an effort there, but we need to start quantifying and getting some qualitative data, are we doing the right thing?  Are we doing it the right way?  And that sort of piece.
And then I'm going to let Naj tell a success story and then we'll talk about any questions you have. 
>> NAJWA GHATTAS:  Yeah, I would say we started collecting that data and the timeliness of our contact calls and the guides and our timeliness of their contact and we've been tracking our events and how many more people are showing up.
And we used to have, you know, 5‑10 people at an event.  Right after we started this model, our first picnic, we had 15 new families and we were, like, wow, and that's because the parent guides were calling these families and inviting them and making them feel welcome and it wasn't just someone they hadn't known about or some weird phone call from someone, it was a parent and they already knew it was coming and it was more comfortable.  So it's already showing and now we're going to collect that data to start figuring out our next steps.
We have three new ‑‑ four new Spanish guides, I have one more we're going to be hiring, and we did just receive a grant that we found out about two days ago so we're very excited to expand our program to include the deaf and hard‑of‑hearing role models, so we want to hire ‑‑ we're going to hire about four or five new deaf and hard‑of‑hearing adults for those families to be at our events and create a handoff from early interventions to Hands & Voices and they have a Deaf Mentor Program and we're actually working with them to make sure we're supporting those families past 5‑years‑old because that's what they serve, 0‑5.
So this was a mom who we had called in follow‑up and she found out her son, James, he's so cute, was diagnosed a little bit late and then she was very emotional mom, we both have spoken to her, she came to a picnic so we had her come to one of our picnics, she cried the entire time she was there, the entire time.  She was just very emotional, just not sure what to do, it was all new to her.
So she came to the picnic, there were different ages of other children there with, you know, some have cochlear implants, some signed, we had kind of everything, and so she was really, like, wow, you know, seeing kind of her future, because she didn't know what was coming, and so she felt so much better when she left and she said thank you so much, seeing these other kids was amazing, and we're, like, you know, you're welcome.
I didn't realize how much of an effect it had on her and she started coming to some of our events and IEP trainings and I got an e‑mail from her the other day and at the bottom, she said I will be forever grateful to you both, speaking to myself and Heidi, and at the time she started giving back to our organization that walked on that journey with her.
So now here's an example of building that parent leadership through the engagement, because now she wants to know how can she get involved, what can she do, how can she help other families, and it's just a beautiful thing to see and to be working the way it's working now after, what is it, ten years?  [Laughs].
So we're figuring it out!  But we're excited to see where it's going.
Anything else?  
>> LYLIS OLSEN:  Yeah, any questions?  
>> NAJWA GHATTAS:  Do you have any questions?  
>> [Away from microphone and unable to clearly hear]. 
[Pause]. 
>> Okay.  Is that on?  
>> Thank you.  It's very fascinating.  I just have a question about your G‑suite, the referral process, how do you get the information back to the state EHDI program that you made contact with the family?  And then what maybe the outcome of the visit was?
And then once you do the visit, do you share information, like on children's special healthcare services and other early intervention programs in the state?  
>> LYLIS OLSEN:  I can talk a little bit about it, if you can talk about the other pieces.
But the Department of Health Services, the follow‑up program ends at we made the offer, they accepted.  So that's where the database for the state ends.
There isn't any, you know ‑‑ at one point in time the guides had access to the state database, but they weren't all trained in how to document.  It's a legal document, it's a, you know.... and it really wasn't set up very well for ongoing documentation about whether they attended events and that sort of thing.
So there really is a very concrete handoff between the follow‑up and Guide By Your Side, so once that handoff is made, the follow‑up is done.
Do you want to talk a little bit about other resources that you give to parents?  
>> NAJWA GHATTAS:  So and I also think part of your question was visiting.  We don't do so many home visits, it's ‑‑ they usually have early intervention in the home and it's kind of a lot at the time, so it's more text support, e‑mail support, inviting them to events.  We don't do many home visits at all, and I prefer it that way.  Unless they ask, we're more than happy to go.
But we didn't have a monthly report, we do report back to the HRSA grant, but as far as you said, like with the Department of Health, once follow‑up is done ‑‑ oops, I keep hitting this thing ‑‑ and then we're there to ‑‑ what were you asking me?  What resources did we provide them?  
>> LYLIS OLSEN:  I was thinking we have a family voices called Raising Special Kids, they do a lot of the IEP training and some of those things, so we're always making sure that families know about that. 
>> NAJWA GHATTAS:  We also had developed a resource guide that we have online on our Hands & Voices website and, you know, a hard copy which is being translated into Spanish at the moment, thanks to Sonya, and that has all the resources in our state, statewide resources, and we're updating it right now to make sure everything is current and then it will be updated on the website.
But all those resources are there.
Depending on where they are and what they're looking for, we inform them of the resources they're looking for, so.... 
>> LYLIS OLSEN:  And the guides have ongoing training and we've tailored some of that ongoing trying to issues in our state.  For example, because of the unilateral thing, we've done some specific training on unilateral hearing loss and what resources are available, what sort of things to be thinking about, and so those sorts of things are kind of ongoing as they come up. 
>> NAJWA GHATTAS:  Mmm‑hmm, yep.  Yeah?  
>> LYLIS OLSEN:  Yes?  
>> I know you make sure they have been referred to EI.  I was wondering how else you interface with EI while the child's in both programs?  
>> NAJWA GHATTAS:  Yes, I will tell you I have been working with the ‑‑ you know, we have our AzEIP program where the initial referrals go to and we work more closely with the Arizona School for the Deaf and they have the deaf and hard of hearing and I work with the program directors and teachers of the deaf and we have been talking about creating that handoff.  We inform each other of our events, we are trying to figure out how to possibly at the ‑‑ when they're about to age out, having one of our guides go with them to that final visit so that they know there is a support system after that.
So we do work closely with them and we have a good relationship with them, so.... 
>> LYLIS OLSEN:  We also use joint ‑‑ we have the HRSA funding and the new grant that the Arizona ‑‑ the community foundation grant that are really looking at expanding that Deaf Mentor Program, in Arizona the Deaf Mentor Program is primarily ASL instruction and so ‑‑ but we want to expand that rather than replace that.  We want to, you know, expand that to hard‑of‑hearing adults, to other role models, to, you know, multi‑whatever.
So, all of the different options out there, and so we're actually, through the HRSA grant, are funding a joint training with Guide By Your Side and the Sky High Program is going to come in and train both the guides and the deaf mentors together, because it's really important that those people get to know each other and spend time together so that they're, you know, kind of working together.
And I think that's always a challenge with early intervention.  Early intervention in Arizona has just hired a whole bunch of new people.  We need to spend some time, once they get them all in there and trained, we need to spend some time with them so they know what I do for the EHDI program, they know what Guide By Your Side does and the Hands & Voices does.  And we're ‑‑ we stay together with them about what they're doing as well.  
>> NAJWA GHATTAS:  Right. 
>> LYLIS OLSEN:  It's a challenge, it's always a challenge to keep moving in the same direction.
Other questions?  
[Pause]. 
>> LYLIS OLSEN:  Anybody else?  
>> NAJWA GHATTAS:  Well, we're out of time anyways.  So if you have any questions, we'll be around.  Thank you all so much. 
>> LYLIS OLSEN:  Thanks so much. 
[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. **