ROUGH EDITED COPY

EDHI
Malpensa ‑ 3:35 pm CST Breakout Session
March 4, 2019

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The CARE Project in Idaho
with Brian Shakespeare, Erika Shakespeare, and Johnnie Sexton
3:35 PM CST Brian Shakespeare 

   >> CAPTIONER: I'm a captioner, and I hear your words. A captioner. I am a human being. 
   >> BRIAN SHAKESPEARE: All right. Is it working? All right. Hi, everyone. My name is Brian Shakespeare. I'm the ‑‑ 
   >> ERIKA SHAKESPEARE: I'm an audiologist. 
   >> JOHNNIE SEXTON: I'm the founder and executive director of the CARE project. 
   >> ERIKA SHAKESPEARE: Thank you all for showing up at nap time. I was telling Brian, I said we're scheduled during nap time. So, this will be fun. But you know what? Right after this, glass of wine and actual nap time before dinner, and you'll be good to go. 
   >> BRIAN SHAKESPEARE: How many of you have heard of the CARE project before you got here? I've got one. And you are here just because you love it so much? Or you need to learn more about it? All right. Okay. So, we met Johnnie, I don't know? 2014? And he sent me this DVD about the CARE project, and it had a bunch of the parent stories, and I was like what is this? I had no idea what it meant, because it was just parent stories. So, I found him at EHDI and had him explain it to me. We finally got him to come to Idaho last year and do an actual CARE project retreat with our families with children with hearing loss. 
   >> ERIKA SHAKESPEARE: Our last names are Shakespeare, and we are married. I'm a private practice audiologist in eastern Oregon, and also the coordinator for region 10, which is Oregon, Washington, and Idaho. I have been an audiologist in Idaho hospitals for a very long time. And Brian is the Idaho EHDI coordinator. 
   >> BRIAN SHAKESPEARE: Our slide that we were updating is to put Johnnie on there. We gave this presentation earlier ‑‑ I think it was the end of last year in Idaho. But really, does Johnnie need an introduction? Everybody knows him, right? 
   >> JOHNNIE SEXTON: I've been a pediatric audiologist for 40 years, and really from before day one, entering the audiology profession, I had experiences with children deaf or hard of hearing birth to five. There seemed to be a missing link, and that was the emotional support for these families. So, I was really motivated to see what could be done about that. So, it went from a seed in my head to a little bit of reality and the whole world seemed to be very embracing of that. Especially the EHDI world. Only because of the support of state level and national level agencies has the care project been able to grow. We are partnered now with every EHDI program in America and U.S. territories. Our goal is to take family retreats to any state and all states to all families to give them that opportunity to come together for emotional bonding for dealing with grief or emotions or feelings. That's where we are, I call it the second phase of the CARE project's infiltration of America. Emily, I was her school audiologist when she was a child, and now she is a grown up working in the EHDI program. 
   >> ERIKA SHAKESPEARE: Has anyone else had an opportunity to participate in a CARE project retreat? How many of you are hoping to bring a CARE project or something similar to your area? Good. That's what this workshop or this presentation is hopefully going to help you out with is to give you some ideas about how you can make that happen. 
   >> BRIAN SHAKESPEARE: This picture is our very first experience with the CARE project. We volunteered at one of the retreats at North Carolina. It was fantastic. 
   >> ERIKA SHAKESPEARE: Nothing happens without partners. These are some of the partners that we worked with. So, the infant toddler program is Idaho's part C program. Idaho elks hearing, it is a hospital system, a private practitioners, which they provided a host of the volunteers, which was absolutely amazing. Obviously the CARE project. Idaho Hands & Voices. So, these are some of the partners that came to it. This slide is really talking about what is family support. Family support is the means with which you support that family. And it was important for Brian and I to partner with organizations that wanted to do this in a supportive and truly family‑centered way that looked at the entire family, not just at the mom or at the dad, but at the entire family, including the siblings. That was really what drew us to wanting to be on Johnnie's first round of infiltrating America.  So thank you. 
   >> JOHNNIE SEXTON: When I started talking about emotional support, I talked a lot about grief. Whether you like that word or not, it's real. Families I have worked with had an emotional response to unexpected news. So, it's a grief journey. Grief is not linear. It's not A to B. I found this graph on a flight in a magazine, and it just makes sense, because it is so abstract. It's unpredictable. There's no start or finish. You don't graduate from it. When the child turns 3, they don't get a certificate of I'm grief free, family. This is truly the journey that all families describe. And it really doesn't matter whether the family is hearing or from Deaf culture, whether the child is going to use spoken language or sign language. It's an emotional journey. So, grief can be positive. Emotionality is real, and it's present in all families. 
   >> ERIKA SHAKESPEARE: These are quotes from the CARE project evaluations, and really, what you can see here is that the parents, the sense of community that they received at this retreat is truly amazing. I saw that when we went to North Carolina and participated as volunteers and had the opportunity to watch these families form these connections and bonds with other families. And to watch these children playing together with their siblings. And you see this. You see this sense of community developing right before your eyes. And it was a wonderful thing to get to be a part of, and it was a wonderful thing to get to bring to our state. I'm sure that I'm preaching to the choir here. It's a lovely thing to be a part of a community that wants to be supportive and wants to lift one another up. And these quotes really, I think, reflect that. I'm going to let you talk a little about the partnership that you have with Hearing First, but that has been unique partnership for ongoing networking for these families. 
   >> JOHNNIE SEXTON: We couldn't do what we do without wonderful collaborative partners. One of our partners is Hearing First, and only because they have a virtual community. And they came to me and they wanted to have a family support portion. And a disclaimer, the name of this organization is Hearing First, but again, we endorse and support all choices. But Hearing First really did give us that opportunity. And all retreats now have their own individual chat room, but they all can join in the larger care project world virtually, and even go higher up into the plane. There are about 800 families in the Hearing First family support platform. 
   >> BRIAN SHAKESPEARE: One thing I like about Hearing First is the bonds and relationships that the families make during the retreats are retained afterwards. Idaho is huge. Geographically, it's large. So, we have people from all over the state come. So, if they're at the very top near Canada or the bottom near Utah, they can still connect via Hearing First. 
   >> ERIKA SHAKESPEARE: We are a geographically large state, but not a population‑large state. We are a few spread across many, many miles. 
    This ‑‑ so, the ‑‑ I have to say that one of my favorite things about the retreats is truly the children's activities. And this retreat in Idaho, I was, as the ‑‑ as one of the directors spent most of my time running around organizing and didn't get to spend enough time playing with my children. I will say that it was ‑‑ it's so lovely to see these kids playing with their siblings and with each other and with people that in these families that look like them and feel like them, that they can really connect to. But you know, if you're looking to bring a CARE project or something similar to your state and areas, one of the things that I can tell you ‑‑ and Lora told me this, and I thought I listened, about having planned activities. You cannot leave a single moment unplanned for these children. You need to be flexible with it and be able to change your plans on a dime, but don't leave a single second unplanned. I can't stress the importance of that enough. One of the things that we learned from the volunteers. The child was ready to move on to bubbles much more quickly than we were. So, having diverse activities that are age‑appropriate, but also overplan. Be flexible, but like hey, if we didn't get to coloring today, that's okay. But still have it available as a scheduled option on your agenda, because chances are you will get to it, because you will burn through the activities faster than the volunteers can recover. 
   >> BRIAN SHAKESPEARE: And all of the parents sign releases for their kiddos to be in the pictures. 
   >> ERIKA SHAKESPEARE: I figure you can have an entire slide show of kids activities. Name tags don't go on the front; they go on the back of the shirt. Some of you are nodding like duh. I did not know that. That was a lesson I learned quickly. I was like wow, that makes so much more sense. When little Johnnie is running down, it's easier to go like, Johnnie, Johnnie, slow down. And they can't tear it off and eat it. 
    So some of the things to think about in the planning process is location. Where are you going to house it? Where is it going to be? That was one of the most challenging things that we faced in Idaho, because we are geographically spread out, so wanting to be able to have families from all over to be able to get there. It is so important to get away and have an actual retreat. But we didn't have this beautiful island to take them to like there is in North Carolina. But we do have sun valley. It is a ski resort. So, we were really, really fortunate to be able to secure some space at the sun valley resort and give these families a real vacation. For some of these families, these were ‑‑ this was one of the only family vacations they have had. And to be able to give them that opportunity is really neat. So, location is important. 
   >> JOHNNIE SEXTON: We have also volunteered at a couple different CARE group project retreats, and one of them was basically held in the city where everybody lived. And day one, none of the dads showed up. They showed up for the filming, but they were like no, we have to work. We'll come next time. And it is just not at all the same like bringing the families together. Those dads need to make bonds just as much as the rest of the family. 
   >> ERIKA SHAKESPEARE: So when you make them travel, they will get there. We do break up the older and younger children so they can have different aged activities. A lot of the decision making is based on the age of the families that you get. So, when recruiting the families, when we first started talking with Johnnie about this, Lora and Johnnie both said you're going to recruit families. You should probably have some selection criteria. We didn't realize quite how important that would be. We had space for ten families. We ended up choosing 11 families, and we had ‑‑ how many did we have apply? 
   >> BRIAN SHAKESPEARE: We had 37 families apply. 
   >> JOHNNIE SEXTON: That's the largest number of applications we have ever had in one state. It was amazing. 
   >> ERIKA SHAKESPEARE: So we were really glad that we had had some sort of selection criteria kind of predetermined because I will tell you that reading through the applications, we wanted ‑‑ we were like, oh, these ones, too. And this family, too. One of the saving graces that helped us to limit is that we only had one hotel room per family with double queen beds, so two queen beds. And we have very large families in Idaho. So, we had to limit it to families of five. 
   >> BRIAN SHAKESPEARE: I think five was the largest. 
   >> ERIKA SHAKESPEARE: That really helped narrow down the playing field in Idaho. So, having some type of criteria, I think, is important. All of your volunteers go through background checks. So, if you don't have a system like CARE project ran our background checks. So, you want to make sure if you're trying to do something without an organization that has some of these things in place, you need to have a background check system in place to go through that for both the families that are attending as well as the volunteers. Choosing them from your audiology pool, speech pathologists, early interventionists, graduate students if you have a university program in your state. You can never have enough volunteers. But early childhood education programs, that's where you want to pull your volunteers from. Because I can tell you that one of the things that was really important to the families that helped them leave their children at child care so that the parents could go and attend these sessions, they were truly free from stress of leaving their children with strangers, because these strangers were professionals that work with children with hearing loss. That was something that they felt like oh my gosh, not only am I getting free child care, but I'm getting free child care from their speech pathologist? That was amazing for them, and really cool. 
   >> BRIAN SHAKESPEARE: We received a lot of feedback from the volunteers that it turned into a great networking opportunity for them. The students got to meet the actual professionals that they will be interning with and things like that. 
   >> ERIKA SHAKESPEARE: Obviously don't forget name tags. That's important. You get very detailed in terms of the room assignments, the staff assignments for volunteers or letting the volunteers know what their actual jobs are. Maps and agendas. You cannot have enough information. You might think that oh, they get their agenda at check‑in? No. They wanted it before‑hand. Had I thought about it, I realized when you're planning something as a family and you're going to go away on a pseudo/work thing, having an agenda really allows you to set. We had local media that wanted to get in on the game, which was really neat and unexpected. The media showed up and wanted to do filming and talking with the families, so making sure you have the consent is important. The non‑bias communication consent form, everybody signs it, family and volunteers all sign it. And then the alcohol policy, which you know, was an interesting thing. But Johnnie said all of these things, they come from learned experience. And so, yes, you need to have everyone sign a policy that they're not going to be drinking during the retreat, like actual hours. After hours, you do what you want. 
    Note pads and pens for the parents to take notes. That's really important. And then the child tote bags. So, Brian, the Idaho Sound Beginnings had the cloth grocery sack things. 
   >> ERIKA SHAKESPEARE: Like the ones you get here at EHDI. They were brilliant for the children for the kids to put their toys or drawings or coats or personal snacks. To be able to keep their own cubby, so to speak, that they could take with them at the end of the evening and end of the retreat. 
    So more activities. And I've got to tell you about this bottom picture. I don't know if you recognize that little pop‑up thing ‑‑ bottom left‑hand corner. That pop‑up thing? You might recognize that as a portable dog kennel. That was my dog's and Brian was like what are you doing with this thing? I was like I just remember that my daughter liked boxes and tunnels and things like that. And anyway, it was a huge hit, an absolute favorite. It was hands‑down one of the most favorite activity things was having this pop‑up kennel. And kids are not always going to use the toys that you bring the way that you thought they were going to use them. So, we brought the sack ‑‑ bean bag toss thing? Corn hole. We brought corn hole for the older kids and what happened is the younger group ended up using it as a slide. People ‑‑ kids find interesting ways to use toys. 
   >> BRIAN SHAKESPEARE: The other thing that was a huge hint was peppermint‑smelling bubbles. I had no idea they made them, but the kids went crazy for them. 
   >> ERIKA SHAKESPEARE: So this is data. We like data. Data helps us make decisions about what to do next time. And in this sense, data really is helping us drive our decisions for our next CARE project retreat. So, both the parents and volunteers were surveyed. The retreat overall was very beneficial. As you can see, the parents really, strongly agreed that it was beneficial. The volunteers, they all agreed or strongly agreed. They found the most effective part of the retreat was really meeting and hearing other families' experiences. They enjoyed being able to hear other people's journeys. And the opportunity to learn through the, quote unquote, expert presentations, which were really open forums with loose ‑‑ with loose presentations about different things. 
   >> BRIAN SHAKESPEARE: Basically we bring in an audiologist, somebody to talk about technology, and a speech language pathologist. The biggest thing I heard from the parents was that they felt they were able to have an audience with an audiologist outside of the five to seven minutes that they schedule into their appointment. So, they were able to sit there for an hour and a half and not have to remember every single question in five minutes. That goes for all of the presentations. 
   >> ERIKA SHAKESPEARE: And the least effective part of the retreat is they wish they had more time and Kleenex. And from the volunteers, they needed more structured activities and Kleenex. What we learned is that you need Kleenex everywhere at these retreats. Yeah. 
    And the most significant take‑home was really that new support network. It's that ongoing support network that the families now have. It's been a really cool, since the retreat, hearing from the families that are still communicating and making these connections, and I just love it. From the volunteers, that opportunity for networking. 
   >> BRIAN SHAKESPEARE: And on the parent thing, like, I saw dads that basically didn't talk for the first half hour of the retreat, at the end of the retreat, they were making plans to go watch football games and meet at the pub. That was really great, because at the beginning they were just staring at each other like they weren't going to say a word. 
   >> ERIKA SHAKESPEARE: I think Brian was nervous at first, like I don't think this is going to work. And it really does. It's amazing. 
    And wish lists for future retreats. The parents were like this is fantastic. And so what happens next? And we are like what's next is our next retreat for the next batch of parents. And I have watched what Johnnie is doing in North Carolina, and there are ongoing and different retreats. How many do you now have? 
   >> JOHNNIE SEXTON: We do at least one annually for the birth to 3, birth to 5, elementary school kids, teens and tweens, Hispanic families, so it's totally in Spanish. 
   >> ERIKA SHAKESPEARE: And you can't have enough volunteers. You need almost a one‑to‑one volunteer ratio. 
   >> BRIAN SHAKESPEARE: We had very close to one‑to‑one ratio, and they still wanted more. 
   >> ERIKA SHAKESPEARE: I just wanted to say the other thing is that ‑‑ we didn't touch on meals, but that was the ‑‑ making sure you actually have a kid‑friendly menu. We were in a facility that didn't offer ‑‑ they just didn't offer it. And we didn't ‑‑ we tried, but didn't get there. 
   >> BRIAN SHAKESPEARE: Sun valley is pretty swankey. They are famous for having the first ski lift in America. And so, it's where a lot of rich people go on vacation. And they did not have mac & cheese, which is a huge thing. 
   >> ERIKA SHAKESPEARE: But they had croissants at every meal. They are real big on the croissants. I think we have two minutes left, and I want to open it up for questions. We honestly can talk about this retreat forever. We are excited about doing this again in Idaho and figuring out a way to make this sustainable. That we do not know yet, and that will be a future presentation. Yeah? 
   >> What was the age range for the kids? 
   >> ERIKA SHAKESPEARE: We focused on ‑‑ oh, what was the age range for the kids? We focused on newly identified kiddos, families that were going through newly identified. So I think our oldest was probably 4? 3? 
   >> BRIAN SHAKESPEARE: We focused on 0‑3, because that's what EHDI is. Johnnie actually got a grant and provided a lot of the funding as well. That was also birth to 3. We didn't limit it to that. Ryder is 14? 
   >> ERIKA SHAKESPEARE: But his sister is the one that qualified. 
   >> BRIAN SHAKESPEARE: Yeah. The oldest kid was 14 and the youngest kid was 1. But most of them were 0‑5. 
   >> ERIKA SHAKESPEARE: Yeah. And there wasn't an age range on the siblings. That was just to help limit the families so that we were like okay, here is another amount. All right? 
   >> BRIAN SHAKESPEARE: Anything else? We'll be around if you decide to. 
   >> ERIKA SHAKESPEARE: Go to the next slide, and let's see. I just wanted to stop and see if there were questions. I was like I can stop at any time. There are some additional comments of things ‑‑ oh! So one of the things that they really, we got from both volunteers and from the parents is they really would have liked increased opportunities for free time opportunities where they could socialize together. And the parents really wanted that so they could share the gratitude with the volunteers for being there. And the volunteers just want more face time with the families.  So, one of the things we have talked about doing for the next retreat is we have a dinner at the initial gathering. But having a ‑‑ like an ice cream social afterwards so that families and volunteers can attend if they want to just to have more free time to chitchat. 
   >> BRIAN SHAKESPEARE: The parents said they don't get enough time during meal time because they are paying attention to their kids. They want to be where Tay can be like okay, go play, and parents and volunteers can interact. 
   >> ERIKA SHAKESPEARE: One thing that was said is it would be nice in the evenings, we can trade off because dad can tuck in the kids and I can visit, and then I can go up and he can have a beer with the boys. So, being able to have that opportunity, just having some loose social opportunities that aren't necessarily structured. 
   >> BRIAN SHAKESPEARE: We're done? 
   >> ERIKA SHAKESPEARE: Time's up? 
   >> I have a question. 
   >> ERIKA SHAKESPEARE: Yeah, okay. 
   >> [ Off mic ]. 
   >> ERIKA SHAKESPEARE: She was thinking about doing something similar and asking about background checks and insurance liability. Somebody did do that for us. Johnnie and the CARE project. 
   >> JOHNNIE SEXTON: If anybody would like to stop by exhibit 12, the CARE project is the vehicle to make these things happen. We run the background checks. Lora Pike is our logistics coordinator. We do partner to make it happen in your state in partnership with a team you create in your state. We have our own professional liability insurance. And we take that seriously. So, as the policy requirements change, we make sure and update our own policies like the alcohol policy. So, we hopefully are a vehicle to get you where you want to be in terms of family support. 
   >> ERIKA SHAKESPEARE: That's a good question. 
   >> JOHNNIE SEXTON: I think we are out of time now. 
   >> ERIKA SHAKESPEARE: Perfect. Thank you so much. 
   >> BRIAN SHAKESPEARE: Just find us in the hall if you have more questions. We will be happy to talk with you. 
   [ Applause ]    
    [ End of stenographic captioning... ]