Event ID: 2784970 Event Started: 1/13/2016 8:00:00 PM ---------- Please stand by for realtime captions. >> Please stand by for realtime captions. How do people know about this? Gina didn't really know about it. >> It was on the website. >> An email was sent to the list server about it. >> Got it. >> It was put on Facebook. >> Rate. >> We are social media, we are out there. >> Look at us. >> A hot topic. Everybody is going to get on there. >> Why are there boxes behind you? Are you planning a quick exit or something we need to know about? [ LAUGHING ] >> She didn't hear you. >> She is packing up. >> Clearly. >> Tammie, can you hear us? >> She might be on mute. Where is she? >> I think she is explaining her boxes but we can't hear her. >> You are moving your bosses boxes. >> [ LAUGHING ] >> I love know where people are. >> We can't hear you, Tanni. we used our six? -- Will you*six. Tanni. We cannot hear you. Can you hear us? >> Robin, do you have an explanation for this? >> Lowball Mac [ Indiscernible - low volume. ] >> Mark, can you still here okay? >> Yes. I can hear. >> Okay. >> Strange, I don't know why we couldn't hear her. >> All of a sudden it went away. >> I think our phones just went out. That's not good. [ LAUGHING ] >> If it is cold -- if it is okay with you, we will start up the webinar and I will you go first. Nearly, Tanni. is having technical difficulties. Diane, you can go next after that. >> Has Peggy been able to get on the phone? Peggy, are you here? >> Lowball Mac [ Indiscernible - low volume. ] >> She was supposed to be able to join us the a roadside. >> It is funny, I remember one time we were on the road and student at home and -- Susan Edelman, we agreed for her to call in to do something and she must have called why different times pixies like in the mountains in Vermont and we kept losing the call and we were just cracking up. We're like we are committed. >> Clearly. >> Perhaps we should be committed. >> Really. >> That I wonder sometimes. >> Let's wait one more minute and see if Tanni. can get her phone result. Welcome everybody for being here. We will wait one more minute and then get started. Thank you for your patience. >> Now she is calling in on her cell phone. I love that. >> Robin, you are really hard to hear. It is quiet and coming in and out. I can hear that you are talking but I cannot hear what you are saying. >> Okay. Is that better? >> A teeny, teeny bit. >> [ Indiscernible - low volume. ] >> Tanni., Can you hear us now? >> Lowball Mac [ Indiscernible - low volume. ] >> Try to hit*six on your cell phone. >> Now can you hear me? >> Hot dog. We are in. >> [ LAUGHING ] >> We have been having problems [ INDISCERNIBLE - MULTIPLE SPEAKER ] >> Yes. Something is wrong with our work phones. They just go out. >> All right. Okay. I think now currently, can we hear you? Carly, can we hear you? >> Can you star six yourself? how is that? >> We are going to get started. I would like to welcome everybody. We are recording this webinar and everybody, except that prepares except for presenters their phone lines have been muted. We are doing that mostly because of background noise so if for some reason there is an unexpected dog bark or something it won't interrupt the presentation. If anybody has any think they would like to say or question it would like to ask of the presenters we want this to be an organic sharing opportunity where people can feel comfortable asking questions for feel free to*62 on mute your phone at any point in time. To ask a question of one of the people that have come to share. You can also hit the hand raising future at the top of the toolbar, that little white person with their hand up. So that we know you have a question or you can write your question into the chat pod. Welcome everybody. My name is Megan, I really want to thank all of you, especially our presenters for being here today. I am hearing a very weird echo all of a sudden. Is anybody else? >> It went away. Okay. We will keep going. Thank you for being here today. For the last year as of this week I have been working at STD be as a project specialist for early identification and referral and family engagement. This is the fourth in a series of six webinars that we have planned related to early identification and referral process where we will be focusing on the medical system. We hosted to webinars in October. And a self-assessment guide and action planning process. There was a webinar in November on the part of the system. Links for those recordings, if you missed them, and would like like to watch them they can be find on the NCDB site under the wikis. You can also send me an email and I will guide you to them. The remaining webinars after the one today will be on Wednesday, February 10 at 12 Pacific time where we will be talking about Eddie and the last one will be on Wednesday, March 9 where we talk about community programs. Details for those webinars will be coming out soon on the website and on our Facebook page and the EI in admissions space. Keep any eye -- in Iraq for them. We have planned these webinars as a result of the state project segment. You were eager to her about what other states were doing, targeted systems, their successes and lessons they have learned. We are glad to have all of you with us today to hear of these states about the work that they have done with the medical system. >> Today we have with us Diane Haynes, she is a State Court, Nader for the Kentucky project. We have Susie Morrow from New York. Tenney Anthony from Colorado. Carly Fredericks and possibly Peggy on the phone. >> IM. >> Hello Ms. Peggy from New Jersey to talk about the work that is being done in New Jersey. The way that this meeting will go today is that we will just have each of the states share out their story and their experience in the work that they have done. With the time remaining we will open it up for questions and answers again, as I mentioned earlier if you have a burning question you want to ask of one of the ladies I'm sure they will be really grateful for you to interrupt them so feel free to do that. The other person I neglected to introduce is, you cannot see, Mark from soundmac that maintains our child conference. He is my partner in crime on this initiative. We are glad to have him here. If you're thinking about child specific number questions feel free to ask that of him as well. Susie also has with her Suzanne Chen who is the family engagement who is the Family Engagement Court, Nader at the New York project. We welcome her also even though you can't really see her on screen quite yet. We will start with Susie and let her share her story and then moved to Diane and then let Peggy and Carly talk and then we will finish up with Tenney. Susie, take it over. >> Robin, if you would open up her little PowerPoint that would be awesome. >> Hi everybody. This is Susie from New York. I am the project director here and as Megan mentioned, I am going to turn my camera, Suzanne Chen is our family outreach coordinator. Suzanne is going to pop on in a few minutes. I know our time is limited so Megan, if you can be the timekeeper that would be awesome we can all talk about this stuff for a while, right? >> Here is our plan. You can see is listed on the initial slide. We recognize we are some of the fortunate ones because we have more bodies but that is because we have a lot of space to cover and a lot of kids to try to find. >> Other major initiatives obviously you see the top one is. We knew we needed to really think about this very specifically for New York. We have a very fragmented system. Early intervention services are privatized and it makes things very challenging in our states. That is really our first one at the top. Over the course -- we have had the grant now, we just started or if they are the first five-year cycle we did a lot of focus but very specifically on this cycle we have some very specific strategies for some activities that we have engaged in that we wanted to share with you. Here are some things about that we have Artie done, ongoing and in some future activities or ideas that we are in for what we have Artie done, as a project, some of this didn't start in the last cycle that has carried through into this cycle. We developed an outreach brochure that was designed specifically for the medical community. It looks something like this. This was a modified person, or other colleagues who had already designed something in Indiana and a few other places. We knew we needed to have some language that was more typical are more geared towards medical focus. It looks a little more medically, it is not exactly a family-friendly pressure and not intended to be. This is a piece that we use in all of our outreach activities. Particularly with providers. We will talk more about that in a little while. We also did a few years ago a mass mailing to the medical side -- society of the state of New York. That was one of those fortunate things because it was who you know, our PI, Patch Rachel happened to have a connection with Dr. Paul Hamblin who at the time was the president. It is these ends that really are the wins. They told us they never share outside information. It is really a private group. They will they were willing to do that prospect that was very helpful because it was a mass mailing through their very extensive medical community. That was a big plus. We have designed and eligibility chart which is now used in all of our, I am going to hold it up and see if we can see it, basically looking at, we have all seen different iterations of this church, the combinations of sharing and vision loss and we have tweaked it. We wanted to make it a little more colorful, user-friendly and now it is part of our packets. We are happy to share that with you if you are so interested. We also created a refer a child checklist. People, you know, we always type the same emails over and over again and how do you refer a kid? Some of the same questions so we decided we would put that together in a checklist that we have to match as well. It is literally just a one pager saying we have, we need a release of records, etc. >> Those together, those pieces together are now part of our outreach packet. >> A bigger initiative, which relates specifically to it in our book please out or other initiatives are this new, we have established a new statewide network of professionals called, which we are aptly calling them the deaf blind advisors of New York. We wanted to take advantage of this professionals in the field that are in a tenured positions because we know they are the ones that are seen most of these kids or have a very further reach than other people do. We have really an amazing group of 12 advisors now throughout the state who are essentially helping us lead up this component. In the short time, we just literally kicked off in October and with this group already we have identified about eight new kids. We feel like that is pretty good in a couple of months. That is a bigger scope for New York New York City project but a very specific the piece for outreach and related to the medical community. >> We have also created a referral list for neural ophthalmologist and audiologists. We have that also as a one pager because we get to the questions of do you have an eye doctor you can refer me to? Where to send and audiologists, that sort of thing. We have that compiled as well. That is very New York steak New York State specific. Some ongoing pieces that we are currently engaged in, I'm sure we will continue for a very long. Of time, one thing which is new to us, we feel like just could really make quite an impact is this initiation of a dot phrase which goes into the electronic medical records for the hospital systems. What that means is, when the input information about a child into their system, if they check off certain boxes, vision and hearing, this phrase pops up on the screen for the provider that says combine vision hearing loss, contact the New York deaf blind collaborative. If we could get that on every single electronic medical restroom -- record system imagine the automatic referral. This is a huge thing for us. We're just now inventing it and it is taking the default of medical relationships in the society. This is something we think will need to be replicated throughout the state across the medical system. That was a really cool thing but we also have ongoing, we are just now, we started in the fall, out reaching to what is called care management coordinators which are basically a system of social workers connected to the hospitals. When families are leaving the Nick you these are the folks that are the core Nader's about. So, we have met with some folks specifically upstate at the University of Rochester and realizing the reach that these people have are great. They have connection to families will be very difficult for us to be connected to otherwise. That is something we're looking to continue and then obviously expense throughout the state where providing technical assistance in some long-term medical facilities who have kids who are the much our residents in their programs. One of the big ones, St. Mary Hospital for children we also have why still in the city system. Very heavy hitters in realizing, which leads to the next bullet, these programs also almost all of them also have an outpatient service department. They are now seeing the light bulbs for themselves going off and think we can connect to our outreach program, the outpatients, because they are then serving people in the community. We just recently, the St. Mary Hospital program, just said to us, they have a staggering 1000 outpatients of children connected to them. So, already in the work in the technical assistance we have done with them over the last year and half, students are just coming out of the woodwork. Obviously it relates to staining -- training to the staff and awareness and the potential there is also very great. Now, as if that doesn't sound like a mouthful already, one of our big outreach components is to directly to the NICU and PICU in the hospital and medical settings. That is what Suzanne has been spearheading. I want her to speak a little a bit about how that is happening and what that looks like. >> Hello everybody. We have been targeting the level III NICU all over New York State. So far we have contacted about 10 hospitals with level III NICU's. They have demographic and populations of how PLEX infants. We have seen a lot of children who are deaf, blind, medically fragile with feeding tubes and dual diagnosis. Also within the hospitals we have targeted specific departments that would treat the vision, hearing loss. For example, after they leave the NICU there is also a follow-up clinic that these children, up until age 3. A lot of the children fall within any of the artwork vision reports, these are the professionals that would follow them up. For each three and they give recommendations for early. -- Early intervention and other testing. I have also met with the social work department for the NICU and the PICU and have done inter-department trading with the social work department. A lot of the level III NICU hospitals also have family resource centers. What that is, a place where parents can go and look up diagnosis is PICU was a facility to print out information. They have support groups and some hospitals also hold many workshops for families take specific to those diagnoses. I have also reached out to the genetic departments, craniofacial clinic, neural ophthalmology [ INDISCERNIBLE ]. Speech and hearing centers and some hospitals also have family support specialists. It is through those connections I have asked and created a dialogue with the professionals if there are specific early intervention agencies they have referred their families too. And through these efforts we have had a lot of referrals for professionals, our youngest referrals have been averaging between three and four months old. A lot of them still in the NICU. We are still waiting on a couple more to complete the referral process. >> So, this is big. This is a brand-new way of thinking in terms of actually knocking on the door of the actual medical provider and getting in there. Suzanne, as a parent, who has navigated the system herself for her child, has the language to do that. So, from that you can see I feel like any sort. Of time our little guys have just boomed. To have you identified kids as young as three months is just amazing. As a relates to our next steps, what we plan to do for the future, we are looking to replicate this outreach to those hospitals of the same level who have make use and PICU was in upstate New York. Really Suzanne has taken the bull by the one and done it down state and has already done it with at least 10 of the major hospitals in New York City. And recently with the speech and language hearing centers for those kind of folks. That is really exciting for us. We are looking to do that upstate also, for future activities we are in the process, we will be developing a postcard that would be, the opposite of the medical pressure, this one would be a family-friendly postcard that could be distributed in doctor's offices we often get requests for those sort of things. That is something that is in the works. Basically saying does your kid have a hearing loss or vision loss, call us kind of thing. We have upcoming, a wonderful medical professional, Dr. [ INDISCERNIBLE ] who is upstate in New York who refers a lot of kids to us. She is a narrow developed a pediatrician. She is going to be doing a webinar for us directly targeting other medical doctors about what does this mean we talk about dual sensory loss? When we hear from our own is that trust factor and it's like if she does it it must be okay if we do it. We are really excited about that. We're looking to host that in early 2016. We are also beginning to look at connected with the visiting nursing programs throughout the state for those who provide in-home service, in resident service. Also with the next bullet, Suzanne is looking into reaching out, we have what is called here the care at home program also for extended services for kids in homes and for kids who have severe support needs. And also up to the age of 18. A perfect overlap. The last one which should be 10, looking at the ICD 10 codes and snowing now that we have a very specific code that relates to dual sensory loss and looking to incorporate that into our outreach packet and any information, presentations that we give, particularly to the medical committee and social workers and those providers, that they are aware that they can identify specifically kids to receive services. That is a lot but I think that is kind of where we are, what we did, what we have ongoing and what we are looking to do in the future. If anybody wants resources we are in this network for a reason. Let us know. >> Great. Thank you, thank you for that great information. For those that are dying inside thinking I need to do all of this and wanting more logistical solutions and time to chat, I want to remind everybody that there will be a hosted drop in call coming up where we can carry on with continued conversations. We will move on to Diana and let her share her work and just be logging all of your questions. >> Great. Thank you, Susie. I have to say that, first of all, I want to say that, Megan, I think you have done an amazing job in one year trying to pull all of this together. I know you had some big shoes to fill and I think you have gone above and beyond. You have done an amazing job. Susie, I have to say, you are a tough act to follow. I just looked at D sitting next to me and I am thinking to myself, okay, this should take me about two minutes. I was trying to follow what you New York is doing. Let me put it this way, I take -- sitting down and talking and thinking to ourselves what do we do next? [ LAUGHING ] how can we take what they are doing in New York and try to bring some of that into Kentucky style? Let me share with you, I have a question for New York I-4 Mbabane. Susie, would it be possible to be able to get a copy of your PowerPoint to be able to remember all of the points of what you are doing? What we would like to do, D is sitting next to me, she is the person that makes sure I do what I'm supposed to do. What I would like to do is take a look at who are the same partners in Kentucky? In some cases they may not exist at all. You certainly have a different service delivery system but who are those partners? There are certain things I thought to myself there is no reason in the world why we couldn't do that in Kentucky. I just never thought of it before. How would we go about doing that? The other thing I wanted to mention to you before I forget, on the slide that is currently showing free talk about the ICD-9 or ICD 10, I'm going to assume that you have this but about a year and half ago one of the things we did is part of the -- as part of the EI committee is take that look of ideologies from the NCDB website from our senses and matched them out. We worked with , there is a person called a coder and this is what they do professionally. A coder within our family services state-level tried to match the codes with those etiologies so people would have them. If there's anything we need to do to work on updating that please let me know so we can certainly test passed it on does pass it on Tuesday. As Susie said, if you're going to work with the medical community you have to know the lingo and you have to know what made up what motivates them. This is big. >> All right. I will now move to what Kentucky is and is not doing now based on what New York is doing. I think we are ready to move north. One of the things that we do, what I want to share with you is not just a particular activity. I will do that. But some things we have learned in terms of forming positive partnerships with the medical community. Susie, you touched on some of this. It isn't something where you are going to say you have an ha ha moment but even after 40 years in the field, 28 years on this project, sometimes we have to stop and remind ourselves of things we know appear but we aren't necessarily putting on a plate. Our work with the medical community has been very humbling. Many of the lessons I personally have learned, professionally learned, I have been able, I work real hard to carry over into some of our other activities. First of all, when we started in terms of making this initiative to work with the medical community, one of the first things I learned, I learned this from talking to medical people, that is when I approach the medical community be very clear about what it is I want. Because I was working with a task force of the time when this started from early intervention, fishing, hearing and deaf blindness and parents at the table and through our partnership we all agreed that early identification was number one. We also had on our agenda early identification referral and improving the actual early intervention services, how we practice those services, working more competently and efficiently with families. What we found ourselves doing is that we then were deciding that if we're going to go into the medical community and look at early intervention we are going to teach them the appropriate weight to work with families. Who better than us to do that? Right? The humbling moment was when I said to him -- sat down with two doctors and told them what I was attempting to do work they stopped me in midsentence and said you can't do that. Remember,. One. And I said, okay, early identification. They said, fine. We hear that. We understand that. Do not, do not walk into a medical community with a message that I'm going to smack you on the hand and tell you how to work more efficiently. He said you are dead in the water. You have too many goals on the plate. You focus on early identification, that is your focus. Keep it there. You will do a much better job. That was very humbling for me. I have tried to take that over into other initiatives. I have to tell you, when I went back to that task force I was initially seen as the bad guy. What they were hearing was the medical community does not like families, they don't want to work with families. I had to spend a lot of time saying that is not true. That is not what they are saying. We have to go back to, we have this huge logit model around us, what specifically do we want to do first with -- within the medical community? It was early identification. I share that with you because this was actually doctors sitting down with me and think if you want to be effective you really are going to have to narrow your focus and stay focused. For all of us who are warm and fuzzy and are really hoping to save the world at the same time, that was very humbling. So, keeping that in mind, the two people I chose to go talk to, Susie, you made a very good point of this, here is the bottom line, it is who you know. Who are those connections? Who are those people? Quite frankly, I saw, New York had the mass mailings, the success that you had with the mass mailings and the failures that we had was that we were doing it on our own. We didn't have someone to connect us into. We went online in Kentucky and had a list of 1000 medical people across the state, simply getting that off of a listserv and randomly sent out this beautiful brochure we had developed and I can tell you, we didn't have an impact. The referrals that came from that were very, very few. I think the difference is, as Susie said, she had someone within the medical field who was taking the lead on that. That is definitely a difference. Keeping in mind in terms of some things that we have been doing in New York and how it did or did not work in Kentucky. That can be very helpful. Here is what happened. We knew we wanted to approach the community. I had to focus on identification and referral and everything else was going to have to take a backseat. Not that these things wouldn't happen, but focus, focus, focus. One of the things that I was told, when I first went to them, the task force I was working with, had developed a pretty sheet on some pastel papers or other resources, if you find a child here are some things you might look for, call us. When I was meeting with the two doctors looked at me as a really, Diane? Really? You want to take something like this and present it to a group of doctors. We know money is short but that is so unprofessional. That is so unprofessional. If you want people to take you seriously you're going to have to develop something that is clean, quick, dirty, pretty and professional. So my next task, when I went back to the drawing board, was to sit down and I had to develop a brochure. Something slick and pretty. What we did, we actually developed this initially almost 10 years ago, I see there is someone from Virginia on with us, initially, I got the idea of this from a brochure that Virginia had at one time. The brochure you all may have seen previously was more of a very dark green and a picture of a child on the front. It was for that time. It worked but we decided we needed to lighten things up a little bit and get away from that dark green color and so forth. We have gone to this. But, the content is still the same. Here is what Virginia has that we loved. It was these inserts. The inserts are essentially saying, this is where we talked the medical talk, what are the etiologies that can raise the risk does read like to say to you if you have these possible etiologies contact us immediately. You may not be aware of front, but these could certainly result in dual sensory loss. I think Virginia for planting that feed. So then we came back planting that seed. So then we came back, we are in a unique position that are grant is submitted on the Kentucky Department of Education in sub contracted back to the University of Kentucky. I answer to both. The lovely thing is we have resources for those I went to the Kentucky Department of Education and said I don't have people right now available at the University who are available to help me with this. They have a graphic designer there in their communications department so I am shooting out some resources to you at no cost to our project. I learned a lot working with those folks in terms of how do you get to the point, how do you get critical information into something something that does someone will read. This brochure was developed. The first time we presented during grand rounds it worked. Let me tell you one thing that has changed, Susie, you alluded to this, at the bottom at one time this said a guide for the medical community. Well, obviously, the medical community and -- sees this and says this is ". This is fantastic. What we have since done as a money-saving measure, when we redeveloped this in terms of color and so forth we decided we needed something we could also take to part C practice had to be a little more generic and now it simply says technical assistance for individuals who have vision and hearing loss. I wanted to let you know why we made those changes. Let me tell you how we did this. To print something like this is very expensive. Quite frankly, when we first went to price it the developed was free but when we went to price it it was very expensive and we did not have that in our budget. I bartered the printing. What I did was, there was a private agency here in Kentucky, if anyone from Washington is listening didn't do it on deaf, blind time, on my own time I was going to do a series of workshops for them. I said if you will pay for the printing of this brochure I will do your workshops for free. I want the invoice sent to you. That was the deal that we made. Just a little roundabout, Susie, when you're talking about your brochure same thing. This was developed geared toward professionals who identified folks who were deaf blind. I'm not going to put this in the hand of a parent. I do not mean that to sound condescending as a I think a parent couldn't understand this but that is not true at all. Emotionally this is very overwhelming. What we did was basically, we call this our bookmark, we use it primarily for families, but it is also something that is something I can hand it to a doctor for quantity a -- ophthalmologists here at the clinic, every time I go over there I give for 25 or 50 so she can pass them out to families. We get them to teachers and so forth. What I want to say to all of you, I developed this through a publisher. I can send you this and you can fill in your own information and have it done in five minutes. Megan, I am more than happy, if I send it to you and you can send it out to the network. This is done through software that the graphic designers have what I am more than willing to do is send one of these to each project and you can take it to your designer if you choose to use this. All you have to do is fill in your information and they can figure out the software or whatever to do with it. >> Somethings we have learned. >> That is great. >> Pardon? >> That is really great. >> I'm sorry, I thought you were telling me to quit talking. I'm sorry. [ LAUGHING ] the two doctors I sat down with, one was a woman in Ohio who is a pediatrician who had a tremendous interest in working with young children who have more complex challenges. She had been doing some work in critical visual impairment, some workshops. She was on our advisory board and I tapped into her. And then I contacted one of her parents. She is an obstetrician but she is a doctor. I had lunch with the two of them and said, I had built family input at that point as well as medical. I said where do I go next? What do I do? Here is what they told me. First of all, if you want a face-to-face awareness presentation with doctors go to your medical schools. Here in Kentucky that is the University of Kentucky, the University of Louisville and we also do a lot of work with the Cincinnati Children's Hospital. They said essentially you want to present during grand rounds. That is when you want to do it. You're not going to host an evening come sit down and chat with us, you're not going to host a brown bag lunch break something that authority in place, these are very, very busy people. Medical grand rounds. I had to find a connection to home get on the agenda during medical grand rounds. I found that first group at the University of Kentucky through our center of excellence. They helped me make that connection to get us on the agenda. The next thing that the women told me was you cannot do the presentation. Which of course at first I took very personally and I was very hurt. I cannot imagine a doctor not wanting to hear from me. They said, doctors don't just listen to educators when have one hour. They don't want to listen to teacher educators? Want to listen to other doctors. Someone will need to do the presentation who is a doctor. New York has that covered. Right? You had uncovered. You have your doctor. So, Sarah, who is our parent/Dr. said I will do it. You don't have to be a neurologist, they just want to see the empty binder need. She and I sat down together and developed a PowerPoint presentation that with explanation, what we were told was first of all you have one hour. Understand the medical community culture. This really helps me when I think about it as a culture. It is not a bad or good or right or wrong that we are the good folks and they are not. We can't exist without each other. You are about to walk into their culture. You have to understand and respect that culture. Your presentation will start at 8:00. You can imagine what that said to me, who is never on time. He prepared to turn a PowerPoint on at 8:00. Be prepared to turn it off and 9:00. If you want time to questions turn it off at 8:50. at 9:00 those people get up and walk out. We're not there to chat and exchange names and so forth. If a mentality. We developed a PowerPoint, I have to say she development she developed it, it is basically looking at the etiology, a lot of terms I didn't understand and she kept saying don't worry about it, trust me. She is right now cleaning up the PowerPoint, putting some new statistics in there. What I will do, Megan, I will send it to you, I am going to send the PowerPoint to you and all anyone has to do is probably change the last slide where it says if you have a child to refer contact Kentucky. Change it to what you want to put in their. Whoever is doing your presentation doesn't have to reinvent the wheel. If it is a doctor they will understand the terms and so forth. Don't reinvent the wheel. Don't pay someone to develop that PowerPoint. It has been done. Once again, what I'm going to do is send you through, if you have publisher, send you the bookmark. I'm going to send you, send each state, Megan, if you would be so kind as to send me an updated mailing list with correct addresses, everyone a copy of this brochure. If they want to talk to our person at the State Department about software and so forth let me know. We can make that connection. I want to send you a copy of the PowerPoint so all you have to do is bring it up and make any changes you want to make and you are ready to go. Medical ground ethical grand rounds have been the most effective way to talk to a large group of doctors -- medical grand rounds have been the best way to talk to a large group of doctors at the same time. We have been able to increase the number of children referred for this. The majority were in the birth to three population but we also had older children who were receiving services, the medical community, there may have been a pediatrician in there who said okay. The other thing we found is that through that presentation there was a development tool pediatrician at the University of Kentucky, what New York is saying, making this connection. Who did stay for a few minutes afterwards and said I would like to talk to you more. He and I ended up having lunch together and talking about how we can improve this system. We reached a point in the relationship where he would pickup the phone and call while a child was sitting in his office. He was described this as a child that you can help. Susie, and a lovely lady sitting next to you, -- >> Suzanne. >> -- Suzanne and Susie you have given us incredible ideas of where we can go from here. We are fortunate in that we have some of that foundation built but we need to go further with this. We need to revisit. The way I am looking at this is here are the pieces New York has done that I think we either have in place were we are approaching for care are some things I know will work in a state like Kentucky. Here are some things that Susie and Suzanne have done that we can go with. We can work toward and modify. Susie, I have a question. For example, your eligibility checklist and so forth. Are those things that you can share with a network where we could go in and do it Kentucky style or whatever? That would be lovely. That would be wonderful. It would help us work out much faster. We also have a pediatric convalescent care center, two in Kentucky, where they will refer a child. I like your idea of going in and actually doing more training types of things with the staff versus one child at a time. Suzanne, I love your just what you're doing with the NICU and PICU because those are sometimes difficult to hit. Many times they are in the lurching larger teaching hospitals such as the University of Kentucky and so forth. I think it has always been referring one child at a time but what I think you all are doing is working. I am really excited about those possibilities. I think the thing to keep in mind, when working with the medical community, is once again, what is your focus? Stay on the focus. Number two, to understand it is a different culture. Wonderful people that if different culture. We want something from them. We are asking them for something so we have to humble ourselves to say we're coming into your culture. How do we respect that? How do we do what we do so we can gain their respect? I think the other thing about what you are saying in New York, Suzanne, I think being a parent you say I have lived through the NICU experience and the PICU experience. Let me tell you what our doctors -- Sarah has asked me to share with you if there's anything she can do to help any state, if you identify a doctor, for example, and they want to talk to Sarah about what we are doing she is happy to do that. Secondly, if you want to do something like this and host a webinar for doctors and you want her to present she is more than happy to do that. The thing she did, as a parent she was sensitive to our desire to make sure we got in the family, she said at the end, she introduced the doctor and at the end of said talking to you today as Dr. Sarah Kaufman. I will take three minutes now to talk to you as a mother. I want to tell you what I experience when my son was diagnosed here in this hospital with [ INDISCERNIBLE ] syndrome. And in terms of doctor to doctor right now. What I heard when you told me that, what I didn't here, what I needed from you at that time. Please keep that in mind if you as doctors are interacting with families. We manage to get it in there without beating somebody to death with it. Megan, I hope this is helpful. I haven't just been rambling. >> That is perfect. Absolutely perfect. All of your resources I know everybody will be eager to get. Just know and trust for everybody on the call that afterwards we will make sure to add the resources that are shared with the links and the recording with the webinar and put them in the toolkit. Which is on our website in the EINR initiatives. Now we will move on to Carly and Peggy and let them share a little bit about their work in New Jersey. >> >> This is Peggy. Carly, are you on? >> I am here, yes. >> Do you want to go ahead and share with whatever I am very new to this project so my thoughts certainly won't be anything like New York and Kentucky. I do have some comments from my work in Delaware through the years and working with doctors and things. Specific to New Jersey if you want to give a little bit and then I will talk a little bit. >> Sure. Hi everyone. I am a family specialist here on the project in New Jersey. Being on this call I feel like I am being very well educated as well. Having a new director come in we are really kind of trying to figure out the best way to approach, making that connection with the medical community. As a parent I know the experience of going through the system as well and how, as Diane mentioned, even being a professional and it is a lot to take in. One of the strategies that we are trying to do here in New Jersey is that direct connect and face-to-face. Going into the hospital, the ideologist offices, the ophthalmologist and making that direct connection. Parents are really looking for those resources and how do we make that happen? We have tried mass mailings, tried to develop brochures where we are inviting people. We are housed out of the College of New Jersey that we are inviting people into our house to receive these presentations for it is really difficult to be able to provide that information and get everybody face-to-face. We are trying that approach as well. I am really interested to hear more about how Suzanne is doing that in New York this is something that we have just introduced as far as fieldwork in the past couple of months. We do realize does rely heavily, especially when it comes to early identification and referrals with our partners at the statewide parent advocacy network, having that relationship is really -- we have assisted their directors and their resource parents to have a better understanding when they are out within the community and working with medical professionals about the services of our [ INDISCERNIBLE ]. In turn, the staff really has assisted us in improving our outreach to all families, especially in underserved populations. We really do rely heavily on that when it comes to early identification and referrals. >> We also have a great collaboration with the New Jersey division of deaf and hard of hearing, the New Jersey state school for the deaf. We work with the New Jersey commission for the blind and visually impaired, the early intervention system. We have an advisory committee picked this has been really effective. Meeting all of the districts involved as well about knowing about what our resources are in providing that assistance. As far as the medical field goes, I cannot really shed light too much on our efforts here in New Jersey because everything is very fresh and this is a continuing effort. I am looking forward to hearing more, especially on that follow-up call as well to learn myself. Back great. Thank you. Peggy, do you want to go? >> I apologize for my voice if people can't hear me. I have a bad cold. In New Jersey I have just stepped into this so I have worked there for a number of years in transition, they do use the specialized healthcare system for the young children. There tends to be, we do have really good contacts within the early intervention. They do have good access apparently to the students, doctors and things like that. The other thing is we are doing within the grant activities targeting the professional organizations. Doing training for their professional organizations versus the workplace. Looking at the pediatric Association and things like that where we're hoping that neighboring people, in a more kind of two Diane's point, in a more relaxed learning environment. That is one of the things that is going on this current year. We'll be going on this current year. These are just some thoughts. I have no idea who is on the call from Delaware, but Mark could probably speak more to this, some of the things, we worked closely with doctors however it is a really unique situation in Delaware. We actually coordinated for our kids. We are in a position pretty much to have access. Much better access [ INDISCERNIBLE ] from early on. Regardless of whether you are in that kind of position, the things I think have helped me either access doctors or have doctors refer me onto places where I can impact others is to attend, I did often, attend evaluations. Parents have the doctors here. To take that information around what the impact is, around their life in school. That has been highly effective. I have been had doctors contact me because I have kind of been sort of a figure in the office through the years in Delaware there is primary places where a lot of our kids come and go from in terms of the medical community. Our efforts would be targeted to those. Many of our students were in the public health system. Within the class does clinic system. One of the most powerful things, when I was involved with this, getting to know the public health doctors and sitting on committees. Any committee with anybody, even if they didn't know why it was a good idea to have me. I would, because the public health doctors sit with many other doctors on other committees, to get to know your public health doctors and have them introduce you or to understand why it would be important for you to be involved with other places where they are going to interface with other doctors, generally being pediatricians. The other one was oftentimes I had very close working relationships with what would be in Delaware the DMR system, many of our students would be at some point love O-mac [ INDISCERNIBLE - LOW VOLUME ]. And the third piece was the Children's Hospital. They were the three main areas where I would get involved with doctors and often times on a committee or at a conference and then basically get to know them and find out where else I should go to get this information out or warehouse would it be important for people to know about us in the project? The third thing I think that was really important, I do it all the time, I think it is so important in so many things about our work is the relationship to call and ask a question about an evaluation and ask the doctor to get back to you or get an answer back to you. Like Diane said, the issue with doctors what is it I want to know? More important, when I called to ask a question about the evaluation or for clarification it may be something I have already known but I really want to get in contact with that Dr. pierk why it's important to me. Was it what is the direct impact on the child, it is not a definition that I need for a clarification on something, it is more about you said this, how am I translating it? Something very sustained that he or she can respond to. Within that oftentimes I develop relationships with the office staff which can be extremely beneficial. In getting our information out. I think that was, that has been extremely helpful to me. I guess that is more my style in terms of the ripple effect, hoping that we are finding out, listening to where or what someone does at a given doctor and realizing all of the places he touches in the course of a week that I could never pierk like a public health situation or something like that. And then to make sure that my universal screening folks know each other really well are in conferences and training together for that infant screening, that they are well in contact with each other because they have a lot of contact within the hospitals. As well. So, they are really quick and dirty but they have been through some of the things that have gotten me the furthest where I had doctors call me through the years. Because they did remember. The other thing that has come up is we may be called into, for the kids that are more complicated, oftentimes a coordinator or family will ask for us to speak with the doctor to talk to the team in terms of what it means, what is the impact, the whole question that many of us still raise in terms of the outcome, what do we need to be watching for? What are the things we're hoping to accomplish? Does kinds of things. The one time I did this for young child in Delaware, I had doctors from all different team in there. There were a lot of different types of doctors involved. In one swoop they got 101 deaf blindness. That was incredibly helpful. Just to get the word out. They are kind of an informal ways. I know there is a lot of work to do in New Jersey to keep going with this. We have relied a lot on our specialized care facilities that have relationships with the doctors already. I think we have a long way to go in that. They are quick and dirty. Hopefully they are helpful. >> That is really great. Thank you. I know you guys are in a major transition with the project. We appreciate you still coming forward and sharing her knowledge. It was really helpful. Tanni., You are up. Stock already. I help people hang in there a little bit. I want to say Gina is also on this call. This is our last slide. If you can go to the first slide that would be great. Gina and I are involved there we are. Gina and I are there. We work closely with our family specialist and [ INDISCERNIBLE ] and we have very active providers. We do things a little bit differently in Colorado which I actually think is one of the beautiful things about the state deaf blind project, they look at their resources, their capacity and they figure it out. One of the things we have done is really worked closely with some other entities so it looks that we are still on the last slide so I'm not sure what is happening but I will try to remember my flights so I can tell you. We have a couple of entities in Colorado that we work very closely with. I want to do a little bragging because the truth is we have just piggyback leverage, capitalized, collaborated, stolen, whatever word you want to use these entities in Colorado that to us really proud with early identification. We actually feel pretty confident that we are identifying our babies and it is not because the deaf blind project has done all of this great work that other people have done, but because we have these entities. The three we will highlight and two I'm going to talk about specifically are the Colorado school for the deaf and blind in Colorado. Two programs that are specific to early intervention with a focus on children with sensory disabilities. The first is the Colorado home intervention program. And then we have the infant toddler program that is specific to Bay police those babies. The final program is anchor center. Let me talk about the Colorado home intervention program. Hits was piloted in our state in 1969. They did and mild demonstration program and has been going ever since. It has been housed at our school for the blind for the last 10 or 15 years. I called Diane yesterday who is a great gal that organizes and coordinates the program and we chatted at length about infant newborn hearing screening. I do most of it but quite honestly she gave me some pieces that made me pretty plowed us proud. Most of our hospitals are offering that. Because of that infant newborn hearing screening she has we know who our babies are with confirmed hearing loss 22 and eight weeks work that should blow our minds right there. Those are kids with confirmed hearing loss from congenital nature. It is about 2% of our population that they track. Two per 1000 births are children identified through the infant newborn hearing screening for the children without want to be identified later would be those babies who either manifest progressive loss that is not identifiable with the infant newborn hearing screening or kids who are going to have acquired loss. They have a two-tiered system. What they do that is pretty great, they have established regular meetings with the pediatric ideologist audiologists that are tied with those hospitals. They literally have established meetings, I think it is quarterly with Children's Hospital, more periodic, lesson quarterly with some of the other hospitals. What they do is meet with the pediatric audiologists to say what is working and are -- what is working and what is not. She said recently there was conversations about families who may want to see a second opinion for Cody Zeller? To reassure that the newborn hearing screening pediatric all yard audiologists understands there are parents who want a second opinion. Why is it great if the babies are wired, a newborn hearing screening preceptors perspective to go directly to chip? We give money at the depth blind grant to our early intervention agencies because they do better identification and technical assistance than our project would do. We do a direct infiltration of cash directly to them every year from our project. It is like the syllable word. I am going to talk about how Gina is very active in Africa last bullet I want to mention, this is a piece I didn't know but I talked with [ INDISCERNIBLE ] but because not all our babies are being born in hospitals they have actually worked, the health department, has really worked to train midwives on hearing screening protocols and practices for those babies who are not going to the hospital system. I'm not saying we have all of our babies but I am saying this is really changing the tide in Colorado in terms of the idea. The next slide will talk about anchor center. Gina did a little reconnaissance for me while we were on mine had anchor center has been around since nine teen 82. Again, we have a long-standing entity. -- Since 1982. Again, we have a long-standing entity. These agencies, typically I have always said Concord two doors. Either come to the deafness door or the blindness door and that we need to do the work to figure out if there is another century sensory loss. That is going to be the last slide. Anchor Center works closely with pediatric ophthalmologist. We don't have a newborn infant vision screening. Even though kind of the oxymoron is even now vision is the more visually detectable than hearing loss at early years we are actually seeing earlier identification with their babies with hearing loss than vision must. It is complicated on two brands. One is the population of children with visual impairments when we look at the three leading cause of vision loss in the country are either cortical visual impairment, retinopathy predatory, optic nerve hyperplasia. Those conditions often present with additional disabilities. These may be our babies to come on the planet early, have brain bleed, some pretty complicated steps for several policy, we know the additional disabilities that accompany article visual impairment. The bottom line is what anchor did is see a mean age of identification and referral of four or five months. Within the first six months of life it is very probable that our babies born in Colorado are either directly refer to the chip or anchor. Anchor has more of the direct relationship with Children's Hospital. We are very blessed. We have one pediatric ophthalmologist, actually two, what is a girl pediatric ophthalmologist, who taken a profound interest in anchor. Because of these people they have perpetuated that relationship to their colleagues for it is kind of like the message is if you can get in the door with one who is powerful that person will open doors for you. They are working closely, I found out today, I did my homework for this call, it really made me feel really great, anchor has opened its doors to Children's Hospital, two pediatricians who are already pediatricians but going back for more coursework and experience to become what we call developmental -- of elemental pediatricians. Developmental pediatricians. These people will, for some time and be in that program seeing babies and talking to parents and finding why it is a important these families get referred. They also have a low vision optometrist that makes monthly health calls directly to anchor. That is not so much for identification but it parcels out the kids who are really going to do from low vision devices at an early age. The last thing is they have an ophthalmology suite built in the anchor center. They worked with Dr. King who said if you build it I will come. You have an ophthalmology suite in anchor center where they want to evaluations. Some of the ideas we want to pursue is how do we link children who fail to vision screenings to anchor as a possibility that they could go for their for the eye exams I might newborn hearing screenings by Dr. exams typically cost money that you either have to route for insurance or other ways. That can cause a delay in the last slide, I want to talk about some of the specific work with the grant. I mentioned Gina, she is very active with these entities. They are meeting on a regular basis. Coordinating between chip and anchor to really say how are we doing with our identification, how are we doing with our referral, our training etc.? We have about 20 babies currently identified. It happens to be 10 boys and 10 girls but sometimes that is little higher or lower but when I do the mouth of our percentage of how many children are identified in the state birth through 21 our babies are holding their own in terms of identification. Jenna has these quarterly meetings. They talk about the senses, training, support needs for [ NULL ] planning a webinar that is going to look identification and referral. We will try to capitalize on what parts he is using in terms of how they are giant -- identifying babies from a medical perspective. Other work is that we have worked specifically with the [ INDISCERNIBLE ] in the state for a standard I refer people can use for eligibility. We're working with the medical community on updating our vision and hearing screening protocols in the state. That is important because we just did that for three through 21, are school-aged population and they brought in some optometrists and some ophthalmologist who amended the vision screening protocol. They actually called it down significantly based on what research is saying is the best thing to do for an idea for screening purposes. We're getting ready to open that door for birth through five. I think we have a pretty good vision screening protocol but I think the doctors are probably going to call me down a little on what needs done. We don't have really a lot of magic forms that we have developed. I just shot an email to Gina to say what we had to share? We really count on his other entities to do our work. I want to say if a baby comes through the door and is identified through chip, they have vision screening protocols, they understand high risk behavior and they actively work with families to get all children identified with a hearing loss to a doctor report now later than the first year of life kicks and if they see things. Anchor is very proactive. We have some hearing screenings forms they are using and we train them on high risk educators for hearing loss. Sometimes the medical community does the first identification and we are relying on our well-trained sensory disability staff to do a good check to make sure that they are either seeing or not seeing any functional indications of hearing problems that require that next step. Gina, do you have anything? >> Port Gina. I put her on the spot expect the other thing is that we do offer some financial support to both of those entities to help us with the identification of these babies. Through the grant. >> Yes. We do an annual memorandum of understanding so that we can give them some money. It has really been great. I went to complement Gina on that. She really pulls together. Yesterday when I was talking to the chip gal we got all done and she blew my mind with the midwives she said the best thing is we collaborate so beautifully and that his things to Gina and those gals. They really take this early identification super seriously. >> This is amazing information. I'm sure everybody on this call is ready to blow up from all of these great ideas that I want to thank everybody for hanging on a little bit longer. I didn't have the heart to stop anybody. All of the information that is being shared was so great. I apologize for being I couldn't stop anybody other ideas. I want to thank the lovely ladies that presented today. We really needed to hear your work I know there are other people on the call that are beginning to work with the medical community or have started and because we are so short on time there is not really an opportunity for a lot of questions but what I would offer for everybody is we have planned a hosted drop in call on Friday is we have planned a hosted drop in call on Friday, January 29 at 11:00 Pacific time where everybody will be back in his room again to continue this discussion where everybody can ask state specific questions to the ladies that presented in a ring questions forward. And bring questions forward. If you still need answers and information we encourage you to join network will also record the call so if you have to miss it will have it available so people can watch it and catch up. The other thing I would like to say is Mark and myself are available to provide assistance to any project that once held with looking at the self-assessment guide and their action plans to figure out next targeted steps so you can be delivered in your work with the medical system. Just reach out and say you like some help. We will continue the discussion moving forward for we talk about Eddie on February 10. We still have a lot of exciting information to share with you guys. I think those are the ones I apologize for not having a lot of Q&A time. I figured the most important thing to do was to let each of these states to tell their full stories. I want to thank everybody for being here today. We do have some polling questions that Robin was going to put up quickly. Just to get your feedback so that we have data for our project office that is high-quality and relevant and useful. If Robin can put those up the creek. You guys can answer those questions. That would be really helpful. Don't forget to call us and let us know or email us if you would like some additional help or have questions between now and then. You can put your questions in the early identification referral forum where we can all carry on discussion if you would like. Here they come. There is a second one. Okay, a huge thanks to everybody. As people have a chance to answer the questions we can leave the room open for a second and then you can sign off and you feel like you have answered and you are finished. Thank you again everybody for your time today. We are really grateful. >> [ Event concluded ] >>