ROUGH EDITED COPY

UTAH STATE UNIVERSITY – CASEY JUDD

EHDI 2019 – TOPICAL SESSION 1 – INTERNATIONAL F
MARCH 4, 2018
11:45 A.M. ET

CART CAPTIONING PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
WWW.CAPTIONFAMILY.COM
800-335-0911
INFO@ACSCAPTIONS.COM

	(Writer standing by.) 
>> SPEAKER:  Hello, everybody.  My name is Catherine Lushman.  I'm a teacher of the deaf, and also I am at the Maine Commission for Deaf and Hard of Hearing.
>> SPEAKER:  Good morning.  I'm Marisa Zastrow.  I'm the educational interpreter coordinator, focusing on children birth through age 21, also working at Maine Educational Center for the Deaf and Hard of Hearing.
>> SPEAKER:  Good morning.  I'm Kristen.  I am a special educator and teacher of the deaf, and I also work for the Maine Educational Center for the Deaf and Hard of Hearing.  We are a state‑wide program.  Both Cathy and Marisa are located in the southern part of the state, I'm located in the central part of Maine.  Maine is a huge state, it takes us about six hours to get from one tip to the bottom, and I am an early intervention provider, and that's what we're going to talk about today with all of you, is what our model looks like in our state, and also how we are integrating deaf mentors into our programming.  So, welcome.  I need my glasses.
(Laughing.) 
>> SPEAKER:  So, we use a routine‑based early intervention model in our state, and things that are included in that model are, um, an eco map, routines‑based interview with the family and/or caregivers that are involved.  We focus on family concerns, we talk about those, we develop family outcomes with them, we assign what we call a most likely primary service provider, we discuss that, we are always open and welcome to collaborative consultation with other specialists that are needed, and we do this through support‑based home visits or visits within natural environments.  This gives you a little bit of an opportunity to look at what an eco map looks like.  We start our, um, our early intervention meeting and routines‑based interview with this, helping families use their informal supports before relying on formal supports, and just having them really recognize who they have within their daily life that really help them to do everything that they are able to do as a family, and we can also talk about, um, the formal supports as well.  
So, you'll see how this is broken into, the top is family and community supports, which can, um, involve friends and neighbors and maybe church communities that they're part of, they might have family that live near, but they might also have family that live far away, however, we have found that even family that live far away, now with technology, are really good support systems for them, and then we talk about educational and social services, which may actually just be beginning for them, but just for them to recognize how we are involved, and medical and health services that they're also receiving for supports, and it's been interesting, doing this, um, routine with the parents and looking at that, and a lot of them saying, wow, I didn't realize I had such a great support system, but this, we keep this throughout the time that we're working with them, and we're able to look back at it with them to say, if an issue comes up during home visit, we can say, well, let's look back at the eco map, and who do you have in your daily life that can help you with this, when they have concerns or, um, questions come up.  
So, during the routines‑based interview that we do, and this is really before we're even writing the IFSP, we're discussing each routine in their day and asking them, we begin with, like, who wakes up first in the morning, and most of us know that when you have babies, they're the ones who wake us up early in the morning, and then we ask them specifically things like, well, what does that look like?  How do you know they're awake?  So, parents then give us a lot of information about is the child sleeping with them, are they sleeping in their room, does the child have their own bedroom, and that just gives us a good picture into the culture of that family and how things, um, occur on a daily basis for them.  So, we really go through that each day, each point of the day, when you wake up, when you have breakfast, what does it look like, you know, where are you feeding the child, and, so, when the children are baby babies, like two or three months old, and we have early referrals and we're talking about that, the day, of course, always seems really repetitive, but we like to go through each of that, parts of the day.  I like doing it with two professionals, so one of us being the interviewer and the other person being the person documenting that.  
So, when you're documenting it, we set it up just on a notepad with, um, what are the concerns, or we put a column for concerns, in the middle, what is the routine and activity, and then on the end, we actually ask the family to rate that part of their day.  So, this gives us information about, we make stars on concerns, and then rating is really from, like, a scale of one to five, um, then they give us which is the best part of your day, which is the least part of your day that you dislike, because then we're able to come up with outcomes later about, well, you told me that it's really stressful in the middle of the day, when you're trying to make lunch for your older children, and the baby needs to eat or that kind of scenario, and then we're able to help them.  We're also looking at, um, that family and child's functioning, which we use something called the MEISR, which is based from Robin McWilliams, early interventionist, and he has come up with the MEISR, which is an assessment tool that looks at the different parts of the day, so when they wake up, when they're taking a bath, when it's getting dress time, if you're just having hang out time at home and playing, when you're doing outings as a family, and we're able to score that.  It stands for measurement of engagement, independence and relationships, so these are the areas we're looking at and rating them so we can also use that information to come up with outcomes where there might be, um, areas that are weaker than others or things that parents haven't even thought of.  
If we're looking at how does your child do using a spoon when they're in a toddler age, some parents may say we haven't even asked them to use a spoon yet, so those are all things that come up in conversation.  So, that is also a tool used within this interview to be able to give us more information.  So, as you can see, I've listed, we document the significant information, and we star the concerns, at the end, we kind of recap everything, we ask the family what they want to work on, we write those outcomes down, and then we ask them to identify and prioritize what they want to work on first or what's really the most important thing to them, not meaning that we won't touch upon all of the other things, and we typically like to come up with, um, anywhere from six to twelve outcomes for that next six months that we want to work on.  If anybody has any questions, please feel free to raise your hand as well.  So, functional outcomes, or what most people know as goals, um, can be participation‑based or routine activity‑based, so it is easier within the birth to 3, I feel like, to really look at things routine activity‑based, but we also know that, sometimes, we want to follow the lead of the child and what they're doing and be part of, and participate in what interests them.  We want to enhance their learning through their functional participation, which is a lot of the information that we gain from the MEISR assessment, and we want things to be really meaningful and important to them.  So, this being opposite of doing a medical model, where you might take your child, young child, birth to 3, to an occupational therapist for therapy in a clinic setting, we're really trying to focus on what happens within your household and what's happening in your daily life and how we can really focus on what's important to you as a family.  
We can expand those activities to other places.  If you do a lot of traveling or if it's important for you as a mom to go to play groups and other mom support groups with your child, and as I said before, really focusing in on interests is always best practice.  The family outcomes can be related to just the child, as we've looked at whatever the parent prioritized, but it could also be a family outcome, such as I want our family to learn American Sign Language, or we want to be focusing on cued speech, or maybe it's just the mom really wants to have a date night with her husband, um, or a partner every month, and also, we end up working with families that, maybe, these are not their priorities right now, even though we have that in our mind, but, maybe, they don't have housing, or they need, um, support around transportation to certain doctor's appointments, um, looking at other resources that we can offer them is also helpful.  We like to also involve extended family, because we know, as parents, um, that our child isn't only with us, that they might be with grandparents or aunts and uncles or cousins, so it's important to focus on the extended family members as well.
>> SPEAKER:  So, to share a few examples, I'm going to highlight the Smith family, and Cathy's going to highlight the Jones family in a moment.  So, we have Molly, who's 2.8, 2 years 8 months old, she's a deaf toddler.  Mom and dad are both hearing.  The family has decided they're going to use bilingualism in the home, they're going to use American Sign Language, as well as listening and spoken language techniques, and Molly has been receiving part C services, which is including an ASL family trainer, her PSP, her primary service provider is an SLP, a speech‑language pathologist, and the family does attend a weekly parent‑infant‑toddler program, and that program is a bilingual program with both an ASL specialist or deaf mentor in the room, along with an SLP who facilitates the group for the families, and we're lucky to have that on our island in Maine.  The three outcomes I captured on the slide are to reduce some behaviors that they've noticed during story time at the local library, and also at home when they're reading to their daughter; to find different ways to communicate and provide access for Molly.  They have a very large family, and family gatherings have upwards of 20 people in the home, so wanting to ensure that the home‑based interventions and coaching model is not just for the direct or nuclear family, but also for the extended family as well, and also to encourage Molly to attend to the speaker or someone who's trying to engage in a conversation with her, so eye contact or joint communication or joint attention.  
So, here's a picture of the family's eco map, and you can see that the mom and the dad have both highlighted that they go to church on Sundays, which is a great support when they're there, but not necessarily outside of those times on Sunday mornings, they have cousins who live out of state, but who are fabulous in terms of using technology and can be supportive at any point in time.  Mom, sister, and brother live in the local area, so you can see a darker line to them, which means that they are providing excess support for that family.  Dad's mom lives down the street, which is a huge piece in terms of support.  Mom's parents are two hours away, so that's not necessarily immediate support for this family, but just being able to capture all of the different professionals and natural supports in their life so that a family can revisit this at any point in time, to tap into what they know of as their resources, and also to expand, if we need to provide additional services for them.  
So, for the story time, um, we added in what was an ASL interpreter, actually, I was working in the libraries times as well, and we have an ASL family trainer and deaf mentor who's in and out of that library environment as well, so what we did was we went to the library, we had pre and actually post‑meetings with the librarian, we selected a book together, because, often, we know that the books that are used to read in the library may be more based on listening or spoken language techniques or plays on words or a strong use of idioms that maybe are not at the appropriate language level for the child that we're working with, so collaboratively, along with the deaf mentor and librarian, we chose a text.  That text was also brought into the home to work with the family, to review vocabulary, to discuss the different signs that we would be using at the library.  We also worked on different ways to setup the environment.  The first library time that I attended, the children were sitting in rows as opposed to a semi‑circle, so recognizing the importance of eye contact.  We also played with having the interpreter sit next to the librarian and having the deaf mentor move through the space, because those few first sessions, where the child, where Molly was participating, she would actually wander around the librarian, so the deaf mentor joined her in her spaces to ensure that she had access to the text, while I sat up next to the librarian.  Um, there was also encouragement and instruction around using a pacing that was accessible, and the signs that were used in the library were also shared with the family at home, so that they could do some post‑teaching as well with their child.  Now I'm going to have Cathy share some information about the Jones family. 
>> SPEAKER:  So, this is about the Jones family.  So, again, as we discussed, Maine is kind of a big state, and you are probably familiar with Banger, Maine, but, um, as we've talked about, it can be two hours or even longer to get to places, and in the far north, there are not as many resources as there are in some of the bigger areas, so we were talking about some of the solutions to this issue.  So, this is Bella, a 20 months old deaf toddler, mom and dad are hearing, mom speaks Spanish and English in the home, and they wanted to use ASL with Bella.  She has been receiving part C services, which includes ASL family training, her PSP is an SLP, and the family attends a weekly parent‑infant‑toddler program, which is two hours from where they live.  So, we, um, but it's important, you know, for that ASL/English access, and deaf mentors, so many families come together, and so it's kind of an important networking for families, and, obviously, deaf people are there, and they do story time, and it's just a great exposure for those families with deaf and hard of hearing children.  
So, the family's outcomes for their child, at her 2nd birthday, they had some specific outcomes, including they wanted her to meet deaf adults and peers, they wanted a plan for her future, they wanted the family and the extended family to be fluent in ASL, to be able to communicate with Bella, that she felt included.  Now, remember, mom also has Spanish, father speaks English, so there's, you know, this is a trilingual situation, and we had interpreters, and they just wanted everybody to know that Bella was part of the family and that everybody could communicate, um, with her when she was there.  Of course, for many of the family members, it was a new experience for them, you know, and she didn't necessarily know who everybody was, and when I came in as a deaf person, you know, they would wonder who I was, and I got lots and lots of questions, and they asked me about my background and, of course, there was a lot of surprise, I guess, that I had a master's degree and that I traveled for work, but it gave the parents and the family optimism about their daughter, that, you know, they're surrounded, um, by people who are not deaf, and they didn't know what Bella might be able to achieve, um, and then they were worried about bullying, um, but, and I explained that as long as parents are involved with the child's life and, you know, offering love and being involved in supporting their child in developing self‑esteem, a deaf child can thrive just as well as anybody else, so I think some of those negative assumptions actually turned into positive.  
So, when she goes into school, whatever school placement they end up choosing, she will have the self‑esteem to be able to advocate for herself, and, so, I did that kind of advice and answering of questions based on my own experience, based on what I know from my studies, etc., and I think it helped them, and, again, they're in kind of a remote area, and there aren't that many services, so we did some video work, so that, um, they could really change some of their perspectives of what it is to have a deaf mentor, what a deaf person can achieve in their life.  Bella was fully involved.  She did a beautiful job, um, acquiring sign language.  There's a, I think there's a video showing her.  Bella's just learning how to walk too.
>> SPEAKER:  Great.  So, that's our experience and what has been successful in Maine.  Does anyone have any questions or anything to share?  I guess we'll have to pass the microphone around too.
>> SPEAKER:  When I have done home visits, um, many, there have been more than just parents in the room.  I wonder how you sort of negotiate who's in the room and who's leading the session.
>> SPEAKER:  We've talked a lot about this with other early interventionists, and I think, in some ways, it's an instinct.  So, I know that if I ask a lot of questions, that's going to be overwhelming, so I really want to start with kind of a warm welcoming, and, of course, it's awkward in the beginning, people are meeting a stranger, and there's a baby crawling around, and they can be shy and, you know, there is discomfort, and that's okay, you have to sort of live with it, and what I often do is I will orient to the baby, make eye contact, and the parents see that, you know, this is an opportunity for eye contact and the baby can, in fact, maintain eye contact, and that's what you need before you begin communication, so I just share some tips, you know, I'll say, well, mom just left the room, and it's like, and they'll ask why would I tell the child that, and it's like, well, hearing children will hear that you left the room, but a deaf child won't, so keeping that implicit information explicit.  People forget when they're hearing the kind of access they have to the world, so I do a lot of narrative exposition and make sure that the child is looking at me, so that there is that communication, and, of course, you know, we don't have that much time, but towards the end of the session is when the parents feel comfortable asking questions, and at that point, I'm very happy to answer them.  By the second or third session, it's a very different kind of interaction, we're just, we've already built that rapport, but it's so important to build that rapport from the beginning, and I do think starting with the baby and seeing how you communicate with the baby is very helpful for the parents or other caregivers.  I think it can be very enlightening.
>> SPEAKER:  I'd just also like to add too that, a lot of times, with the family, prior to that, and we know it's going to be the mentor coming with me on a visit as the teacher of the deaf, that we kind of prepare and think about what are things that you've thought about that you want to ask a deaf adult, and we try to prep them, so that they have that, not that we have to make, like, a list and they go down through the list, but it starts, they start thinking about it, so then it's a little bit more natural when they're there.
>> SPEAKER:  So, are you a deaf mentor or a teacher of the deaf?  What's your actual role?
>> SPEAKER:  Yeah, so, I have a lot of hats, actually.  I mean, I am a teacher of the deaf, but I work sometimes as a deaf mentor, and I work in other kinds of capacities as needed.  It depends on the families.  So, you know, if they want a deaf mentor and they're asking questions and they wanted to know something, like, you know, how did I learn literacy skills, um, you know, I can certainly share that with them, so I basically, I bring my entire self in my totality.
>> SPEAKER:  And, um, how is the interpreting process working for you?  Is that something that you setup yourself?
>> SPEAKER:  So, um, my interpreter is fantastic, she's standing right next to me, she's very humble, but she's completely integral to the process and understands exactly what we're trying to do here.  She's worked with me before, so we have a very natural flow.  She sits on the floor with me, she follows my lead and does what needs to be done to get it done.  It's a very natural environment.  It doesn't look like the super professional interpreter role that you might have seen, she gets on the floor, she plays with the baby, like, you know, she also engages in eye contact and eye gaze, so it's a slightly different interpreting skill that is required, when you go into the home.
>> SPEAKER:  Do you introduce the interpreter when you go into the home?  Or does the interpreter introduce herself?  Are you leading the process?
>> SPEAKER:  So, first, yeah, remember, I don't come in at the very first session, so, um, Kristen will go ahead and introduce the whole process, you know, like, the deaf mentor or teacher of the deaf is coming in with an interpreter, this is what it's going to look like, but the truth is I've actually had very positive experiences.  Um, I would have to say, generally speaking, they're very positive.  Sometimes, if there are in‑depth questions, you know, about my background, then, of course, we pull the interpreter in, but sometimes, I can actually have direct conversation, one‑on‑one, with the parents.  You know, it depends on what the situation is, but it's very positive overall.  Um, but the first visit with an interpreter, you know, is very much, um, needed, but after that, you don't actually need an interpreter anymore, you can, once the family's a little more comfortable with ASL, I mean, they're very nervous in the beginning, of course, but, um, at some point, they get used to communicating directly with me, and we can go without an interpreter.
>> SPEAKER:  I also had another question, Kristen.  Do you stay for the entire time of the home visit, or are you both there together?
>> SPEAKER:  Yeah, our model is that we stay there always.  We're the primary service providers, so we're the constant anchor to the process, and then we bring in the other people to build capacity, so meaning, whether it be the deaf mentor, because it has to do with an outcome that the parents want, or if we're working, like, Bella's, I have a lot of motor, um, concerns, and her family does as well, so a physical therapist will come in with me, um, on a regular basis too, and we put that on the IFSP as consultation, so depending on whatever it is, but what they're recommending, I make sure we carry out on other visits as well.  So, I'm responsible for all of the outcomes, whether they have to do with her deafness or not, and it really just works well, because that parent always has that one person that they're connected with, they build a relationship, and then we're able to invite the other specialists as needed.
>> SPEAKER:  So, that is our time.  Yeah, I'm sorry.  Do we have time for one more question?
>> SPEAKER:  Well, I think I took over the room, so, maybe, someone else can ask their question.
>> SPEAKER:  The woman in red, I know wanted to ask an question. 
(Off mic.)
>> SPEAKER:  Thank you.  Feel free to come up to us after as well.  We can, um, meet in the back or the hallway.  

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