Event ID: 3167193 Event Started: 2/8/2017 8:00:00 PM ---------- Please stand by for realtime captions. >>Hello, is that Felece on the line? This is Robbin Bull with NCDB. >> Can you hear me? >> Yes. We are going to get started in a few minutes and the presenters will turn their cameras on when they are called on to speak. Thank you for checking your camera, that was great. >> Okay. So when I need to speak to I hit start sharing? >> Exactly. Yeah. That will be great. And, your phone can be on mute, it looks like you figured out star six for mute and unmute. So, you can be on mute when not speaking and use star six to come off of mute. >> Perfect. I will mute myself now unless you need me. >> I think we are good. >> Okay, great. >> Thanks. >> It seems as if we are at the top of the hour right now. So, I think we can get going. >> If you could give me just one moment, Megan. That would be great. We have a few people coming in. And we are still trying to get one of the presenters on the phone line. >> Doctor Anywane-Yeboa, if you can hear me, this is Robbin Bull. If you could use star six to unmute your line. Can you hear me? >> I can hear you. >> Wonderful. Great. And I can hear you. That is just great. All right, so you can use the star six to put your phone back on mute until you are ready to speak during the presentation. >> Okay. I cannot use the sound from the computer. >> Okay. >> Okay, so now I am on mute. >> I can still hear you. There you go, it looks like you are on mute now and I cannot hear you if you are speaking. All right, Megan, I am going to turn it over to you at this point. Thank you. >> Okay, Robbin, you can hit record. >> Hi, everyone. I would like to welcome you to the webinar today and thank you for joining us as we learn about the medical model that the New York Deaf-Blind Collaborative has created to improve their early identification and referral effort in the great state of New York. My name is Megan Cody and I am of the initiative lead for early identification and referral as well as family engagement at the national Center on deaf blindness. As we all work to get children sound as early as possible, a key ingredient is having a strong collaboration placed with the medical community. I am honored to have Susie and Suzanne joining us today from the New York Deaf-Blind Collaborative with some of their partners in the medical community in New York. This webinar is being recorded and phone lines have been muted to reduce background noise. We will have the recording available on our website in the next few days for anyone who would like to access or share it. And if you have any questions, we plan to have the presenters answer them at the end, so feel free to either put them in the chat pod, as they are presenting in the lower right-hand corner, or, hang onto them. And when they are done and it becomes question and answer time, you can hit star six to unmute your phone and ask a question when they have completed their presentation. So, thanks again for joining us and I'm going to turn it over to Susie and Suzanne. >> Hi, everybody. I am Susanne Morrow and this is my colleague, Suzanne Chen. It seems like you have to have the name Suzanne to work here. Any sort of iteration on the spelling go, you will see. We are happy to have this opportunity to speak with you all and to share, I guess it is kind of no good deed goes unpunished, right? So you do something right and NCDB calls you and asks you to talk about it. We are very happy because of course on these projects, we just continue to grow, evolve and learn about what works and what does not work. We have been fortunate to find a few things that do. So, let's go ahead and kind of dig into that. We are very lucky, though, because we could not be doing this without having some of our partners to speak with us. We are very excited to have three guest panelists today, they are representing three of the major medical institutions here in New York City. And, Suzanne is going to give an introduction to each one of them as we kind of go down the way a little bit. And as Megan was saying, it probably would work best if we share sometime at the end for question and answer. So I'm going to go ahead and turn it over to Suzanne. Her role on our grant has been so critical in terms of enhancing the outreach that we have been able to achieve. And, you can see here, I think it was the year 2014, that we made this big shift. And as those of you who are on here who work on one of the deaf-blind projects, since we are education grants, I don't think we traditionally thought about engaging very specifically with the medical community. At least we have not on the grant, until just a couple of years ago, and really kind of shifting the way we think about particularly early identification for the young ones who come into the world with some complications. So, that is where Suzanne steps in. And I will let her go from here. >> Hello, everybody. So, my name is Suzanne Chen, and I am the outreach coordinator for the New York Deaf-Blind Collaborative project. Like Susie said, we started to shifting to concentrate on working with the medical community in 2014. Prior to 2014, I worked closely with a family specialist here at the project, assisting families and supporting them through information and resources. With my background, I have an 8-year-old with CHARGE syndrome and I am way too familiar with being in the hospital with him over the years. So, that actually helped me have a bridge, going and speaking to the medical professionals in the hospitals. He has vision and hearing loss, he also was premature with medical complex issues. So, as a parent, I was really struggling once I was discharged from the hospital with what sort of resources are out there, not necessarily medical, but support, emotional, and, the different resources once he is school aged. One of the things I did is tell my story, as a part of the bridge to connect with families in the medical community. And I felt that using my story actually humanize the term of what deaf-blind was and put a face to what it is. The title for outreach coordinator, not only encompasses the family peace, but, introducing New York Deaf-Blind Collaborative to the medical community, explained the supports that we offer families, and having that direct contact with professionals, using that information. That was a direct reflection speaking with the medical community, with our efforts, and we noticed that the youngest that we have identified has been three weeks old, which was a great accomplishment with the project. Because, that child was still in the NICU and we were able to help once they were discharged from the hospital. We decided to take different steps first to plan on how to contact the medical communities. We made a list of different communities and levels of the NICU in New York State. High level NICU go from level one to level four. Level for the ones that take the most complex care, from 21 to 35 weeks, with different symptoms, genetic abnormalities, and, different medical complications into pregnancy. We also contacted different hospitals in the area because not all children's hospitals have a high level NICU. And then, a lot of the children's hospitals specialize in ENT, ophthalmology and pediatric surgery, whatever. They may not necessarily have a NICU that can specialize in the different doctors that a child with medical complications see. We also contacted NICU follow-up clinics. Once the child is discharged from the NICU, they go to a clinic called the NICU follow-up clinic. Just to get followed from when the discharge, usually up until age 3. And then they would basically refer the children and families to early intervention. And then, they will also pull up if, say, the child had a failing ABR, any changes in the medical history or changes for vision or other things they may need to follow up with. Another resource that we had and hospitals that we visited, I noticed that a lot of hospitals for children were really trying to get family and patient centered. So, a lot of the children's hospitals had family resource centers. Those centers are usually located in the lobby of the hospital. And, it is really more for giving families information about specific diagnosis is. Have support groups that parents can go to in the hospital when they are inpatient. They can also get information about medical conditions and different languages. And then, just research and information about health concerns for the children. And it is also a way for them to contact insurance companies about staying in hospital and also when it is time to be discharged to go home. A lot of the hospitals that have family resource centers also provide workshops sometimes, to a specific ideology. And they bring presenters in and bring workshops for the families on a monthly basis. >> We also contacted the different specialties that a child who is deaf-blind might see. So, from head to toe, we did audiology, developmental pediatricians, and then they can go into more of that with the NICU follow-up clinic later on also. But that is the -- benefit of the elemental pediatrician is they work with a team of different professionals. They could be psychologists, speech and language, occupational therapists, and, they are helpful for evaluating things like care of the child. Ophthalmology, we worked with identifying a lot of the low vision and neuro-ophthalmologist in New York State, and comprised a list for families as there cold -- as they are called in NYDBC. And we noticed a lot of hospitals have their own workers. So, there will be a social worker for the neonatal intensive care units, there will be one for the PICU, pediatric intensive care unit, there will be a social worker for audiology and ENT, so, we really targeted the social work department for those specific departments, who would be on one-to-one contact with the families and coordinating their care. I also noticed that some of the larger scale children's hospitals have complex care clinics. And, the benefit of a complex care clinic is the possibility of really trying to create a clinic where if a child has complex medical issues, they can go and have access to all of the specialties. In one visit. And then, they are able to exchange dialogue and ideas and see the whole package. There are also support groups on site for the hospitals. And then, I also noticed that a lot of times, the specialist will try and match up parents who have children with the same ideology and try to network with each other, once they are discharged. Also, a lot of the children's hospitals have NICU reunion days, once a year, all of the NICU families get together and are able to talk and communicate together and introduce families to each other. So that was another way to get involved with the family. >> [ Pause ] >> I am trying to figure out why this just got very huge on the screen. Okay, there we go. >> So, do you want to -- >> Should we jump into some of the tools? >> Sure. >> All right. So we thought we would share a few of the tools that we have used. And now looking at the list it seems like it keeps growing. Partly because that is we have learned along the way and learned what has worked, what people have suggested and we have shifted. On this list you will see medical brochure, postcards, magnet, rack cards, an eligibility chart, EI&R outreach model, referring a child checklist, and then the ICD-10 codes. We are not going to get into the ICD-10 codes, I'm sure you're familiar with those but it has made a difference because we can speak the same language with folks in a medical environment when we refer to those. We thought we would show you a few things that we have and that we have designed. This is just a cover page of this medical brochure. I am holding it up to the camera. It is a multipage document. Obviously on our grant we all have some sort of outreach material, outreach brochure. But we traditionally did not have, you know, it is very different language when you're talking to folks in a medical environment. This originally came from our colleagues so we can't take credit for this, Indiana, and a few other states that had already designed one of their own. We took it, they gave us permission and we modified it for our needs. We have to say it has been a biliary -- very helpful tool because it puts our work and the kids that we work with into, again, a medical perspective. And, it breaks down what our potential congenital infections, hereditary syndromes, all of that. So while this is probably one of the more costly items, because it is color, it is multipage, it has been extremely helpful. And in the back there is actually a pull out. This is sort of like a rack card with our contact information on and. So, these are items, pretty much all of these items are what go into, sort of, our outreach packet for the medical community. So that's the first one. The second one is our postcard. This is our first attempt, and I have to say we are actually not using this one anymore. We decided people probably really don't care so much about the levels of TA that we provide. They just need to know who we are and what we do. But, this is our first design and we were using this postcard in early years and decided -- >> I was going to say, I was just reading this when we were speaking with the medical professionals and also with the family resource centers. But another suggestion of why we turned over to the rack cards is we wanted something more family focused. When a parent was to go to the family resource Center and see this, they may not necessarily know what these different things are, early identification and referrals. So, we try to make it more family-friendly and different terms, so this is something that they would need. >> Absolutely. That is the direct feedback that Suzanne got going in and out of so many officers and departments. Saying, do you have a card that you can place? They are called records because they -- rack cards because they literally get placed into racks. If you think about going into your doctor's office, there are those cards everywhere. To be placed in the waiting rooms, at the family resource centers and things like that. Oh, wait, we are jumping. Let me go to that one first to show you. >> So, here is our new design. It is the front and the back. He wanted to make it, like Suzanne said, much more kid and family-friendly. And as we all know, the term deaf-blind is heavy-duty and often does not feel applicable to families. So, kind of trying to get away from that and posing the question, does your child have hearing loss? Does your child have visual impairment? If that is the case, someone may pick up a card where they normally would not. The back of this answers the question, does my child qualify, and gives a few examples about that. And we thought, you know, it can't hurt to throw a few cutie pies and their faces on that. There is Suzanne's little guy on the left. It is a long version, we have completely done away with the postcards. These are getting a lot more attention. And, to go back, we also created magnets. We wanted to be able to leave something with people. The first one on the top left was the very first design. And again, as things have evolved, we get feedback and wanted to go to a much simpler version. Again, it looks kid friendly and to say, what can we offer you? This is not specific to the medical community but we use it there as well. >> On a side note, the great benefit is having a magnet and when I was visiting social workers in the different professionals and was talking to them, I noticed right behind them was the desks. >> You could just smack the magnet right onto the background. They will see the magnet and they will automatically add those >> This one came from Suzanne and being in and out of all of these different departments. We decided that New York State is much different, but how we cannot find all the contacts in these places by ourselves. What we did was ask Suzanne to list all of the departments and environments that she had gone to and learned about with our type of kids. In doing so, it took two pages to build. Here's the first page, here's the second. We are starting to use this now in a different way. It is an outreach tool to our other colleagues in the field. We are asking now, when we go to do training, or any sort of special department, we use this also as an extra hand out and say, if you happen to know anybody, can you give us referrals in these categories? And, that alone has been extremely helpful in expanding our network. We just started using this last fall. Trying to lessen the work and burden on just the New York project staff, to rely on that expansive network of colleagues that we have on their. Because they're going to have great referrals that we just did not know about. This tool specifically, we are very happy to share with somebody but the sort of department are going to be pretty much standard I would imagine. So, you see there is a whole variety of lists here. The first one is just much more geared to the different types of departments. Within the medical community. Different medical institutions. And then, some additional, often, outside agencies and referrals. So, we are using this one in the medical community and then also outside of their, again, to sort of bank on the knowledge that is available amongst our colleagues. >> And then there is this pretty one. So, this is our eligibility chart. Some of you on the project already have some sort of version of this. We have all been working under this same guys, in terms of definition. But, we found that, you know, in talking to people, it is so complicated. We thought, let's put some colors around it, and let's make it easier. I took it and reconstituted it and put this down. We kind of broke, you know, the dual sensory peace into two categories. And definitely eligible for our services. We also added CBI, our contact information, etc. So, this has proven to be an extremely helpful tool. In a whole variety of ways. We have done direct professional development off of this to raise awareness of what deaf-blindess really means, and then also bringing this to the medical providers because they are working off of this chart. It goes automatically in our sort of intro packet. You know, the intake packet, people who are referring kids. We use this and a whole variety of ways. Also if people would like a copy of this, we are happy to share. >> I'm happy to say that when I have given this to medical professionals, they have not laminated -- they have it laminated at their office so that once they have a child with visual impairment, they take out the cheat sheet and see if they qualify. >> That is great. We love cheat sheets, right? Makes our lives easier. We know the medical environment has a lot of forms and are very busy people. How can we wiggle our way in in a way that is really quite easy? And then this last one is just a cover page that we put together from our project because we constantly get emails or calls that say, how do I refer a child to you. We kept saying the same things over again and we said, this is silly, we should put together a checklist. It is a one page handout that is easy to go to various providers and also within the medical community is. We should do this, this, and this. And, we often will get this, along with a packet that is referred to as. So that is just sort of a simple form that we put together. >> All right. So at this point, we'll ask Suzanne to give an introduction to our guest panelists. We are so fortunate to have with us today, carving out time out of their busy schedules, and to talk a little bit about our interactions we had, and, how in fact the work that we have done with them has impacted their practice, impacted the way they think about kids with hearing and vision loss, that sort of thing. All right? Do you want to introduce? >> So, Felice Sklamberg, I met her when I did a NICU follow-up . All yours. >> How are you? So nice to see you guys again. >> Hello, thank you for joining us. >> Okay. So, I am a team member, it is myself and a developmental psychologist, and a neonatologist. And, we do the neurodevelopmental follow-up clinics for the children who were in the NICU. The at risk population, born at 32 weeks or less, less than 1500 grams, or, with any, you know, particular syndrome, neurological deficit, traumatic birth, or anything that puts a child at risk for developmental issues. And, in addition, we just started within the last year, we started within a follow-up, the neurodevelopmental follow-up clinic for the babies who have undergone cardiac surgery. And, we follow the children from basically the six months corrected for the preemie, or, at six months for the postsurgical, to anywhere between the ages of two and three. Our purpose is, even if the children are receiving early intervention services, we do a check in with them, and, we monitor their development, give any feedback, make referrals as needed, based on what they are receiving, what they need to receive, and if we find any deficit areas. So, we do come across many children that potentially are referrals for your coalition. So, hence my involvement and interest. Often times, some of the children fall through the cracks because we more so maybe need motor issues, or, health issues, or other things seem to be more paramount, and, the vision and hearing seems to sort of fade into the background and usually takes somebody else to say, oh, you remember that? Unless the children are frankly, you know, completely blind or have profound hearing loss. >> So, when we identify a child, first of all, we do a daily on that -- [ Indiscernible ] on the children. We see where we are. We do a medical history on them and then check in to see how they have been doing since their last visit. We check on hospitalizations, we ask for any update on the vaccinations, if they have had their follow-up by appointments, if they have had follow-up hearing tests. And then often times, we try to develop a rapport with our families, the psychologists and myself. And we get a lot of information sort of on how things are going at home, and what are concerns for the family, and, we try to meet and handle referrals based on where the family is. Whether it be their educational levels, whether it be their anxiety level, whether it be their geographic level, where they may be concerned about their immigration status, and, how known they want to be. And all things like that. So, every child is sort of handled differently. I have had a really nice relationship with Suzanne Chen and it has been very easy for me to reach her and talk through things when we have a concern with a family. I generally give her a heads up about what we see, and then we get the referrals started, if it seems appropriate. I don't know if that answers some of the questions or speaks to some of the things that you want to know. But, I am happy to answer any specific questions, or if you want to direct me in terms of more about what it is you would like to hear. >> Felice, this is Susie from the project. One of the biggest questions then was, was this a big surprise? When Suzanne first contacted you and you start working together, was it a surprise to learn about the deaf-blind project? Had you referred kids before? Can you talk a little bit about that? >> Okay, well I don't want to say that anything is a surprise. I have been a therapist for 25 years, so there isn't an awful lot that surprises me. I have worked in a whole variety of settings, aside from in the NICU, I had worked in early intervention, I worked in preschool, special ed settings, while still working here at the hospital. I have done home care in all kinds of neighborhoods, and, with very, very devastated children, to very high functioning children. So, I was also for 10 years doing evaluations for early intervention and worked with some very wonderful people. And, I have worked with some wonderful social workers along the way. So, I have, not that it was a surprise, but, it was a pleasant find. That I would have just, in the past, referred to the lighthouse, or you know, sometimes we would have called the Lexington school, you know, for information, or we don't have a social worker in our program. So, myself and the developmental psychologists sort of do a lot of digging on our own. She is also a professor at Pace University, in the PhD program. She has a sister that runs Cody's house here in the city. I have a lot of contacts all around. So for me, it was just a wonderful sort of the missing piece to tie things together for these children. And, it saved me an awful lot of work and has been so valuable to some of our families, where even if they are involved in early intervention, I find that a lot of the service coordinators are fairly new and young and they seem to come in and out and in and out. And, we seem to need to do more of the work for the service coordinator, and tell the service coordinator what needs to be done. So, that is how it has been used. It is just saving an awful lot of legwork and time I feel, and has helped the families just streamline and get what they need and advocate. >> This is Susie. That is great and the kind of information that is helpful to us. We have a few more questions that are appropriate to all of the panelists so maybe we'll hold them for now. Thank you, Felice. If you can stay on in the background for a while that would be great. >> No problem. And, by the way, I was so, you know, thrilled learning about your program, that I had reached out to the social workers before Suzanne got a chance to in hospital a couple of years back when I met her and told our develop mental pediatrician that works over in Bellevue about the program, because we service children both at NYU and at Bellevue. I just thought that she knew nothing about it. And, I felt like it was important to start spreading the word. And also, we have fellow neonatal and developmental behavioral pediatrics fellows that rotate through, they rotate through our program. That is always something they educate them about as part of their training. >> That is just great. Excellent. >> Okay, I will hang out in the back and if you need anything, just let me know. >> Okay, great. Thank you so much, Felice. >> We are going to move on to Ebony. If you could turn on the camera icon at the top. And once we see you on the screen, we will let Suzanne give a little introduction about you. >> Okay, so, Ebbony McPhatter, I do training with her at St. Mary's hospital. And, that is the new position that she was telling you about. >> Thank you. So, thank you for inviting us to this great opportunity to share in our experience. As Suzanne just mentioned, we have the opportunity in meetings, and she educated her care coordination team on how to assist in helping families. Identifying those early signs as well as gaining access and support for those who are deaf-blind. Here at St. Mary's, more specifically, in our care coordination department, our primary goal is to address those unmet needs, such as how to do the [ Indiscernible ] and making sure life-sustaining medical equipment and supplies are in the home, where it was an eye opener to find out that we totally are clueless about those diagnoses, such as those who are deaf-blind. And it may not appear or the problem may not end up getting addressed until school age. And part of our care coordination, we are there to help families meet the medical, social, developmental, educational and financial needs for our children. And, when that occurs, and not having the full knowledge of everything that is out there, that can be debilitating. Especially for us as care coordinators in helping out our families. We do rely on a medical team, on our individual medical team, as well as the academic institutions, to first reach the families. With that initiation in getting those hearing and vision screenings in our ongoing monthly home visits with our families, we can then assist and try to figure out how to better help those families navigate the system and see what is out there for them. So, having outreach coordinators was definitely a great help in our care coordination and helping provide optimal care coordination, more specifically, for our population. Tools that were used, we definitely have those, some that we saw earlier by Susie. And I see that you guys have added new items, that definitely helps. When we hear our families started dressing our kids, having issues in the schools, having trouble seeing, or if they are having hearing issues, we automatically start handing out those packets to our families. And, I know personally, I have worked with Suzanne, preparing for those IEP meetings, more specifically on two of our cases, I definitely troubleshoot with Suzanne before hand, and making sure that the appropriate school environment and those services in the academic settings were provided to our families. And, having those buzzwords ready to go were preventing -- and presenting that to the district representative. That was especially helpful. >> I am trying to think of what else I could share or what else is needed. Again, our team really relies on the medical team or academic institution to kind of spearhead. It is really by the parents sharing their concerns with their child, or the young adult or individual that they care for. >> This is Susie. Thank you for that. For other people to, because there are folks running in from different states outside of New York and who may not be familiar with St. Mary's, but, the care at home, though, would be familiar to other people, is that correct? Is it a similar program that may be called something else? >> In different states, it may be called a different name. It is more specifically a Medicaid waiver program here in New York, that allows families to gain access to these case management services. And, our care coordinators basically are the hub. And, we try as much as possible to make sure that we know every provider, every service, every vendor that is serving our family, that way we can streamline information, make sure services are being met, and there is ongoing progress with that service. So, we are [ Indiscernible ] at home. We also have other case management programs which are additional New York State waiver programs, medical service and our new program which is called pediatric house homes, adult house homes was started many years ago, however we are just now launching a pediatric one. >> That is great. Is there a recommendation you can make for those folks who need to contact -- or a certain protocol in terms of someone gaining your services or the care at home service? >> Absolutely. We can definitely help out with providing assistance. You can take a look on our website, stmaryskids.org. And, for nationwide, there is also a great website called Family Voices, and they help out with identifying service programs, in each state. >> Grade. That is very helpful. Programs in each state. >> Correct. >> Okay, great. I trotted those down in the chat box. That is really great. Lastly, is there one specific thing that you could say that in the interaction with Suzanne that has interacted your practice in terms of, you know, kids with hearing and vision loss combined? >> I will stay on a personal note, Suzanne is very familiar with our care at home program. She is a mother of one of our recipients. And, having that relationship, and as she stated earlier, humanizing the diagnosis, and putting a face to these diagnoses is extremely important. And, having that eye-opener about those underlying diagnosis, which sometimes we may be fixated on providing one type of service, and totally missing out on the whole picture for a child and young adult to have access to that optimum care, and continuation of care. So, the interaction was great. She is easily accessible. I never had issues reaching out, troubleshooting, or asking additional information for other patients that may not be in our particular care at home program but maybe inpatient and are planning on discharging. But again, she is very easily accessible. >> That is great. Thank you so much. Thank you so much for your time. If you can still hang on in the background we will have a few more questions at the end. Thanks. >>> Let's get this turned over. Our next panelist unfortunately could not get on the WebCam, based on actually in the hospital, and will be joining us on the phone. Suzanne, if you want to give his introduction, we will make sure, Dr. Anyane-Yeboa, you can get on through the telephone. >> Can you hear me? >> Yes, great. >> So, Dr. Anyane-Yeboa is a geneticist at New York Presbyterian Columbia University Medical Center. He is a very famous and humble doctor at the medical center and we are very fortunate to have him. He has been a great supporter of families and helping them with services outside the hospital, he is actually my son's geneticist as well and diagnosed him in the NICU. So, doctor -- Dr. Yeboa? >> We wanted him present with us but since he could not be there, we could have your camera on and see your smiling faces smiling back at us. >> Okay, yes. In most hospitals these days, there are geneticist. There are different types of geneticist. You know, but the area that we deal with is clinicians. Most geneticist, pediatricians, will have gone on to train for maybe two or 3 years, specializing in genetics. There are also people with other backgrounds, neurology, OB specialist to our geneticists. We went with genetic counselors. These are trained specialists with a Masters degree, that came from the genetic counseling school. We have fellows, and these would be doctors, young doctors who are training to be geneticists, and we trained them. Being in genetics, we use a very complex area of care. Because, many of the children are born with multiple congenital malformations. Some of them may be mild, some of them may be severe. And, we have to help to unwrap what condition they have, and you know, provide them with genetic counseling. As well as find and coordinate specialists to take care of them. Some of those specialists are ophthalmology, neurology, orthopedic surgeons, ENT specialists, and a whole lot like chemo ptosis and so forth. We deal with every speciality in medicine. And, in doing that, we come across many situations. If you imagine that somebody goes into a pregnancy, not knowing that that pregnancy will end up with a problem, when the baby is born, you know, the family is confronted, you know, with a situation which we are not really anticipating. And, apart from being very difficult for them to deal with, sometimes it becomes, you know, very -- because they have to see a lot of doctors, they come in and go, the cardiologist comes in and goes, and everybody talks to them, sometimes they get very overwhelmed. Sometimes they may not really hear what we are telling them, because they are so overwhelmed. The majority of patients that we see in the NICU, you know, come back and see us, usually when they are three months old, six months old, one year old. Not always because we have to clarify the diagnosis. You know, but sometimes, we make sure that they have all of the connections to the specialists that they need to receive. You know, backgrounds of these patients are very varied. Most of the patients that we see in upper Manhattan, Spanish-speaking patients. Many of them don't speak English. And we have to use interpreters. We have patients who come from all corners of the world, from Pakistan, from Yemen, from every place. Those people again may not speak the language, and they come also with their cultures. So you know, there is a cultural barrier, language barrier, and you know, the basic knowledge of exposure to hospital care. Sometimes, it is also not uncommon to find situations which a family may have more than one child affected with the same condition. And, that becomes extra difficult. But, I think one of the most difficult things to do is to find a young child who may have been born with hearing loss, and you knew -- do genetic testing and you have to disclose to the parents that the hearing loss may be progressive. Or, they should anticipate, you know, that there is going to be visual impairment in the future. So, the parents who did not have any expectation at all, of this happening, yet, they are confronted with problems that they really, really don't understand, and most of the time they have not even heard of what condition we are talking of, you know, before. And so you know, it is very, very helpful when we have access to [ Indiscernible ] -- services that you provide, because as I said, we coordinate the services for the patients. And so, when we can get a service, like what to provide to them, so that they can learn how to deal with it, they can learn more about their condition. Frequently, we get referrals from therapies, from the audiologist, from other counselors, and, we get referrals from the services, like your service, for children with complex disorders that have health risks, you know, they need our help to sort out. One of the things that makes some of the things we do frustrating is that it is not always easy to come make a genetic diagnosis because some of them are very complicated. And, we ourselves may not understand what we are dealing with in these children. One of the barriers is barriers to genetic testing. Most genetic tests are quite expensive, sometimes costing in the thousands. Usually when a genetic test is introduced at first, most of these tests are done in private labs. And you know, they want only cash or commercial insurance. You can imagine if you're in a population where 70% of your patients don't have insurance, or the children are just on Medicaid, and it becomes a problem to do genetic testing. Many of them get relieved when they find out that they have programs, that they could go to for help. You know, they are very, very grateful for that kind of referral. We also use some of our parents for support services. Because they have gone through similar problems. The new parents feel comfortable talking to a patient, a parent who already has a child with a similar condition, and help them with services that they need. In the New York area, almost every major hospital has the geneticist working with them. And I know that Suzanne is doing this very well, to network with all of the geneticists and the hospitals, corporation hospitals and other hospitals where they may not have easy access to the services as may be present in medical centers like the type that we are working in. The audiologist are very very -- very, very special because as you know, noun is required by law that every baby born should have a hearing screening before they are discharged. And, approximately one out of every thousand babies born will have a hearing problem. But, there are still some of them where the hearing is okay. That subsequently, they have children that are school age. All of these issues have to be taken into consideration when, you know, one is providing these services. I see on the form that used to refer patients, there is a long list of genetic conditions. Where these kids would be good candidates, you know, for referral. I did not realize the spectrum of what we had said to your program is that wide, because we see kids with almost every condition that you have listed here. So, overall, I think anytime we have services, anytime we are able to have, you know, people, they don't have to be, you know, poor, illiterate, or not speak English. We have people who it does not matter. Everybody who has had a child with multiple congenital problems has talked about. So you know, our rule is not only to make diagnosis, our role is to provide counseling, making sure that the parents understand what the issues are, making sure to be able to connect them to other specialties, making sure to direct them to support groups, and, let them know that they can come back and see us at any time. I have patients who come see me every year, not because they have to do any genetic test, but they come sort of so that we can see how the cases are doing and if there is any new information about whatever condition they have, then you know, we can share with them. So, I think that is also very, very useful. We have adults, young adults, you know, teenagers who may also fall into, you know, this category. So, our services are always available. And, anybody who, you know, needs to be seen by a geneticist, it is not too difficult to find one. And I'm going to stop here so if anybody has any questions. >> Dr. Yeboa, this is Susie. That is very helpful the way that you described that and laid it out, kind of in a linear fashion for us. And one thing that jumps out specifically, I know in your conversation with Suzanne, you just recently talked about our form. And, what Dr. Yeboa is referring to is the child form that the state deaf-blind projects use in terms of identifying children. And I understand when you are looking at that, that you may have had some suggestions on some other syndromes or some other particular points that we are missing. And, I think that is really important for us to open a dialogue, because I'm even going to turn to the folks at the national center, if they also want to comment, we have had this form in the same fashion for many years. So if there are some things that we are overlooking, that is extremely critical for us. We surely get referred kids with unknown situations but there if -- if there is a particular syndrome, we would surely love to be able to get those. >> Right. I will see if I can upgrade this. But I suspect that you have almost everything that I can think of, some of these very rare genetic conditions. This is very, very helpful. Because, all one has to do is look through the list and, you know, select what condition it is. It also allows one to look at other conditions so if the condition is not in the list, you can write down the condition. So, I think that form is quite comprehensive. >> That is great. That could be helpful just in case. Obviously we want to make sure we are covering all of our bases. >> And Dr. Yeboa, this is Suzanne. I know when we spoke last time you asked how you normally give support to families when they visit you. You spoke and said that sometimes if you have a family with a specific syndrome, you try to introduce them to another family that you might see with the same syndrome. So, have you seen that be helpful? And, how do they develop relationships? Do they give any feedback on making that connection? >> It is very helpful. But one has to be very careful who you are referring the patient to. Because, two children may not have the same degree of severity. One may have something much more severe, you know, Dan the child and parents are reserving. So that sometimes the kind of information you provide may not be completely suitable for the parents. One of the things I tell people is to be careful when they go onto the Internet. The Internet is a good place for information but as you know, there is also a lot of misinformation on the Internet. Frequently we find ourselves trying to correct information that people have taken off of the Internet and come in very upset. But I said the most important fact is that we don't, you know, we keep seeing the children every, you know, year. They come back, even adults. Some of my patients are adults and they come back with their own children to see me. It is something that we will continue to do and brings us to the -- have a chance to practice. One of the trainings of geneticists require that they should know about these community agencies, and what do you do and how to connect with them. We learn a lot from you. We teach you some, but we also learn from the parents as well. The parents stay with the child 24 hours. The parent comes to see me for support for only one hour. So, we learn a lot. We learn a lot from the parents. But, we let them know that they are not alone, we help them in whatever way we can. But, be careful when they go onto the Internet to get information. Just make sure that they define clearly what that information is. >> Dr. Yeboa, this is Susie. I think what you said is so helpful for parents to see us as providers to encourage parents. I don't think it necessarily would have thought to encourage a family to go back to see the Genesis again on a fairly regular basis. Obviously we know those systems -- symptoms are progressive in nature, you know, like Usher syndrome. But there may be others with late onset complications and things like that that we may be aware of, but to kind of know that we should be supporting parents and returning I think is really helpful information. >> You know, that is really, really very important. Because, there are new treatments that are coming in the near future, there will be more treatment, and hopefully some disorders that may be we can cure in the future. Now, how are you going to be able to find them again since we don't see them on a -- the best way to do it is to have the parents come back once a year. Some of them come back once every other year. We have patients that still come back. So long as we get information that is pertinent to them, they can learn from that kind of information. So, no, we don't let the patient leave unless they choose to leave. >> That is wonderful. This is Susie again. It just occurred to me, I'm wondering, since you don't keep your own database in that respect, would it be helpful from our side, from the deaf-blind projects, to have a list of perhaps syndrome specific referrals to organizations that would support families? >> We do have a database that the patients see. But, when you're in the hospital, you're running around, you are so busy. So you know, if you have maybe you have seen 50 people in the past or 100 people in the past, somebody is going to have to contact you. Somebody has to make a phone call. Somebody has to send something. That is where the problem arises. The addresses may have changed. Telephone numbers may have changed. And, you have no way of finding them. So, the easiest way, when I sit down with them, I tell them, you can come back and see me every year. If they choose not to come back, that is also fine. But, I feel that if they need some help, they can always come back. >> That is great. I am thinking specifically, you know, there is an Usher syndrome coalition, there is the CHARGE syndrome foundation. We have connections to those very specific groups who are finding new treatments or what have you. Such a critical component to have families connected with. >> Right. For example, with the Usher syndrome, there are many genes that cause hearing loss. And so, every child that we make a diagnosis, every time we make a diagnosis, it may be something entirely different. Something that may be rare or me be common. Now, you know, Usher syndrome, most of the hearing loss is found not too long after that, and so they find the hearing loss and they may not be aware of, you know, visual impairment that is associated with it. Until when the child starts losing, you know, their vision. So if one makes this diagnosis, yes, it may upset the parents, but at that point, even before the visual loss appears, that's when we start linking them to services, so that everything will be geared toward the virtual time when they have vision or lost their vision completely to be able to educate the parents also. So, that is just one example of some of the things that I mentioned. >> This is Susie. Thank you, doctor. That is very helpful. In our jobs we are walking that fine line of understanding, you know, where families may not be ready to hear this information, but knowing said earlier it is possible to get connected from a parent to parent perspective and to start to gain that knowledge in terms of if it is just about the etiology but also about becoming an advocate for your child or what have you. So, we are definitely on that same vein where we struggle with that. But, thank you, doctor, so much for your time. This is extremely helpful. I know I have been taking notes and my other colleagues have as well. I don't know if you're able to hang on for a little bit but we may have a few questions in the next 10 minutes or so. >> Okay, so I will stay in the background. >> If you could just hit that star six two mute your line and we are going to talk about a few more points. >> Okay, great. This is Susie. I will start our camera again. Okay, and we are back. I'm kind of laughing because back in the early days, remember, we started using the different online platform is. But, we make people get connected in different ways. I feel so jazzed up about hearing directly from providers. Is really makes this work is so real and applicable. And, one slide we wanted to go to and Suzanne was going to speak to about a great example of a direct systemic change, what can happen based on our outreach. Do you want to speak about that? >> Sure. This was a direct reflection of doing the training with the audiology department and ENT department at Columbia Presbyterian. And I found it so refreshing once you sent me the notes for the child that it actually says on the bottom recommendations. All of the doctors can actually pull up all of the notes onto their computer. Say when a child is inpatient, if they want to look at their medical history. The great thing is under recommendations it says, number two, referral to the New York Deaf-Blind Collaborative in light of the patient's hearing and vision loss, assist in the process, in order to determine proper school placement. So, that is an amazing result of working with the medical professionals and getting us in the medical system notes. So, just hospitalwide, all of the doctors are able to use it. >> That was really so exciting. Suzanne came and said, look at what is officially on this referral document. This is really exciting for us. >> My next goal now would be to try to replicate this in other departments within the hospitals and then we will branch out to the other hospitals. So, this is going to be something that is in audiology and I will revisit with the low vision neuro-ophthalmologist and see if they can mimic that in relation to the patient's vision and hearing and make sure to include why it is in the hospital, that all the doctors are inputting this into their notes after they are done seeing the patients. >> This is one piece of it as an outcome. One thing we want to talk about in the outreach component that we did not get into yet was, Suzanne has done a lot on her own, there are times that I have gone with her. Sometimes it has been as short as a 30 minute conversation, they squeeze us into one of their department meetings. And then it is all the way up to them saying, this department would love to have some version of the vomit. So, it has presented itself, or folded out in different ways. And so, most of this work has happened in downstate New York. And so, we have a big state with a high concentration in medical facilities but of course we have others upstate. What we can do is learn as you go and take this and replicate it upstate in different environments. And of course as you go, the more rural things become, things are more stretched out so there actually aren't that many high-level NICU and PICUs obviously as there are downstate. But we are looking and feel like as we go and things get weeks, we have a better way to address and kind of almost put together not a package per se, but a formula that is really kind of starting to work. And so far, we did quantify it before, we counted up to about 30 knew little guys that were identified and referred to us in a short period of time within a matter of about 18 to 24 months. If we think about the numbers in our project, that is pretty incredible. In the beginning, if you missed the number, the earliest one identified was three weeks old. We surely don't get referrals at that age. We noticed on our registry that our numbers had big gaps and it was in the 0 to 3 that we surely knew we should be having higher numbers. And based on taking these action steps has really kind of amped up, we are excited about that. One of the other things we are doing larger scale for the entire state, this is something new that we started doing about 2 years ago. So, we basically said, especially for those of you who are in a large state, it is next to impossible for us to do individual outreach. New York is very big, and we are a project of four people. How do we reach out to everybody? We created basically two networks. The first call to deaf-blind advisors of New York which is created as a group of professionals, and then the second is deaf-blind parent advisors of New York, being just what that is. This started as a pilot a couple of years ago. We were saying, it is silly for us to constantly reach out and identify people when we know our colleagues, particularly those in itinerant positions, division providers, hearing folks, speech pathologists, what have you, who are in and out of a lot of schools and seeing a lot of kids. And so we wanted to really take advantage of their access and their reach. So you may have seen, we did basically a call for advisors. Again, a couple of years ago. We also already knew some of the cream of the crop so to speak who had already been working with us in our network, and proposed this idea. The first year, we started off with 12 folks. We had some really specific criteria that they needed to be in itinerant positions, they needed to have some knowledge, not experts, in hearing and vision loss, and basically be willing to just collaborate with us. These are not people we are hiring, we are not bringing them on as consultants, but just to act as someone who can continue to spread the word and knowledge amongst colleagues to ultimately increase the identification of kids. We are able within our grant to offer stipends at the end of the year as a very minimal thank you for their time, because the design of the initiative is that we need face to face over a weekend, and the middle of the state, beginning of the school year and a wrap-up session face to face at the end of the school year. These are on the weekend. People are giving up their time. And then we have not quite once a month, but every six weeks we will have a web meeting and share some updates and some action steps that have taken place. And because it was so successful the first year, just the natural outcomes that we could not have even participated were just so many and so wonderful that we have not only carried the initiative through, but we have expanded it. So, now we are up to 25 professionals in our network as advisors. And then this year this past fall we started a parent strand. And, we had eight parents participate. And, the whole goal being that we provide training on deaf-blindess, what that means. And, to give a super intensive instruction about our grant. What do we do? What are our initiatives? What are we charged with? What are the outcomes? Once those folks are clear in the understanding about what we do and our response ability's work, they are able to take the information out there. And again, it has truly been such an amazing network. So, I think this is an idea that can be replicated really anywhere. Because again, it is not really contingent on money exactly. It is just a way of thinking differently about how to take advantage of our colleagues that are out there. And then this last one that is here is outreach coordinator assistant. Our gal, she is a coordinator. But again, if we go back and look at that one tool that we showed you, -- >> Susie, can you hear me? >> Yes. >> Unfortunately I have to go see a patient. >> Absolute. Thank you so much for your time. You answered many questions that we have floating around there anyway. >> Thank you. I have learned a lot, too. >> Wonderful. Thank you again and we will be in touch soon. I am so glad that he was able to hang on and give us as much time as he did, incredible. But, specific to this form, the EI&R outreach model, we share this with our colleagues. This network, particularly the folks that we shared it with, were able to complete it, they shared it with her own colleagues. As they start coming back to us via fax or scan, now the whole idea is, what do we do with it? Now we need more people and because Suzanne is on the grant only part-time, and as you can imagine, this outreach page alone is its old full-time position. So, we are going to be bringing someone on just part-time, a few hours, who is going to be able to actually do the follow-up piece to this piece. So, we really want to design a way, a better system, of pulling people into the fold, and constant awareness about who we are, how to refer kids and what have you. So, we are really excited about that because it is just pending now. And it is really starting to come together. So that is really exciting. Okay, so I am taking a look at the time and I know that we want to be really cognizant of that. So, if folks have questions for obviously the panelists who are here, or other questions for us, we would be happy to sort of talk through those. And, you see, this is a prompt for you to ask questions. The question marks that are on here. I have jotted a few more questions down. I don't know, maybe if Felice and Ebbony could hop back onto the WebCam. Really it would be great for either one of you to ask questions. I know that Suzanne and I have questions floating around. Maybe we will give you a second to get reconnected. >> I'm here. >> All right, there's deaf-blindess. >> All right, wow. That went pretty seamlessly. Incredible when technology is on our side. One question for you, thinking about the child count form, and if you know the form I am talking about, and I just wonder, from a doctors perspective, I am sure he looks at that and says oh yes, of course. As opposed to others, where that form can be very overwhelming, there is a lot of information on it and I wondered if you had that experience, if you actually use the form yourself or have you referred people to us and then we fill it out? What makes that process easier, do you think? >> For my population, they are a little bit fewer and further between. So, I just directly deal with Suzanne and she kind of guides me. But, the form is pretty self-explanatory. But the other thing is, when I have a conversation with a family, if the markers come up, that is just something I automatically know, a light goes off in my head to reach out to you. So, it is just kind of an ingrained process, at least for me at this point. >> Okay. >> As coordinators, it is a little bit of both. But we primarily do in presenting the count to the family, they do become overwhelmed. And then that is when for some of our people, we have to reach out to Suzanne who will assist with our families in filling out those forms. >> That is good to hear. I think that we are kind of probably working along that idea. >> I mean, we try to be a little gentle with our families, because they are here for follow-up and are already on edge. And you know, again, depending on who their families are, but when or if we really want them to do something, we like to do it gently. And, I personally don't want to miss speak about something, or misrepresent something. So, I honestly prefer the full explanation coming from Suzanne or somebody from your organization. Very much like I do with early intervention. I will make the identification, I will touch base with the agency, and, the way that we work here, it is better. I let the agency then work with the family, and take care of the process. If there is a family that says let somebody else do the whole thing for me, that's fine. But usually, we kind of need to handhold. Because we also don't want to alienate our families. Sometimes if they hear things too sharply, they don't come back. >> Right, right. Absolutely. This is Susie. I think that is kind of the nature of the business that we are in in terms of how do you say what and when? But by the time that folks get to us, sometimes that information has already been broken in a certain way, right? Because it is in the title of what we do. But, we often get referrals, families of kids that we know and need support but of course, the family is not ready for that. And again it is usually around the actual label. We have had a lot of conversation in our field about that and what have you. That is kind of another conversation for another time. >> Keeping an eye on the time, I selfishly wanted to ask, just from your perspectives and the roles that you have, do you have other suggestions of how we can continue to basically get our word out there? Because again, I said in the beginning, these grants, since we are education funded, we haven't traditionally thought in terms of the medical field. And so, we have had some successes now but I feel like there are probably some other things that we are still missing. So, if anything comes to mind, that would be helpful. >> I think reminders, face time, checking in with people. Because he's been -- even in our unit, our nursing staff change every now and then. We have just had attendings that have turned over. Follow-up clinic, which is part of the extension of the NICU, half the time they forget that the right arm is attached. Even for us, I have to continuously remind and talk, and sort of become like that nudge that whenever they see me, it pops up in their head. Or, they just hear it over and over again. I think, you know, at least a biannual check in, a reminder, a postcard, phone call, email, something, just to keep it fresh in people's minds. >> Okay. We use constant contact which is an online email system. And so, we find that that is a means to reach out but of course that does not hit everybody. We have to get people into the database. But, thinking of ways that are easier electronically. Ebbony, I am sorry, I cut you off. >> No. That is okay. In addition to reminders, I was also thinking about, there is a cheat sheet, of our key time is in an individual's life, and when they should go for the hearing and vision screening. Sometimes it is not always referred in the medical field, if you are very familiar and I'm quite sure that you guys are, some of our hospitals are clinic based. And a lot of times, do our patients see the same doctors each visits. So, they're only going in, becoming acclimated, and, they may not be thinking about referrals to these types of screenings. So, if there is a cheat sheet that we can have and we can also include that on those front-line workers, we can include that in the conversations to these families, that may be helpful. >> And, you probably saw when I showed our newly designed rack cards. Would that be helpful to actually send some of those? Whether we see this in person, to have handy to give to families? I know this would be helpful for colleagues in other states. Or is that just too much paperwork? You know, too much stuff? >> Before going out to the actual individuals, I think it would be best to first give it to the professional. That way, we can spearhead the conversation with the family. They might just chuck it if they see it in the mail, if it is not at the top of their list. It might not, you know, grab their attention right away. >> And for us, I think the social worker as the gatekeeper for the information and handing it out as needed, and, you know, basing it on where the family is at, I think that is really important. I know in the NICU, and Ebbony, I'm not sure how your family feels at St. Mary's, but often times they are so overwhelmed that they don't even remember what anybody told them an hour before, or when they are discharged going home. They are just overwhelmed. So, who is to say what they remember? And, half of the papers they have go in the trash when they get home. >> Yeah. Maybe it is more we think about sending some documents to you, really for your staff purposes. And like you said, we are generally learning that social workers are the gatekeepers and some of the other, what is the other rules with the complex care providers? It is like they really are the ones managing things. And so, I think that we should put that on our list of things to do in terms of getting some of the materials, you know, out to places, just to have available. >> I think that is helpful. >> And I don't know, anybody from NCDB, Megan, if you have any specific questions. NCDB is the national Center on deaf-blindess, they are our counterpart to the state deaf-blind projects. One of their initiatives is this, early identification. So they have the Birdseye view, on, you know, what's happening across the state, and if there are similar challenges. We are constantly trying to share across state lines. So, this information has been a souffle helpful -- super helpful to us and the other states. But, anything else that we wanted to share? >> I just wanted to say thank you to Ebbony, Felice and Dr. Yeboa. You are the dream team of the speakers that I deftly would have selected for this presentation, just because you are like the hub that talks to all of the specialists within the hospitals. You are our main go to person. >> It has been so helpful, those relationships are so critical. And as we look to move forward, like we were saying, we look to replicate the outreach for the state. It is nice for us to be able to say in working with St. Marys and in working and referring, because, a name is a name and it makes a difference. So, thank you. Thank you for your time in carving out and hour and a half plus to meet with us. So, thanks again. >> Thank you. >> Good luck. >> This is Megan from NCDB. I want to thank everybody joining the webinar today and especially all of you presenters from New York for taking time to share knowledge with our network. I am really 100% confident that this information will help other states think about how to enhance their child find efforts and even seeing Susie frantically taking notes, her wheels are spinning. It is really a treat for us to hear from providers that are actually working in the system, to get your feedback about what is and is not helpful and at the national center, we can invent things that we think will be usable but until we hear from you all about how it can actually be put into effect, we are not 100% certain. We thank you immensely for your time today. And in the next few days, I want everybody that joined us today to know that all of the resources shared today and webinar recording of this will be added to the NCDB website. And we have put the link over in the chat pod, but I will also post the information in our EI&R initiative group on the NCDB side. Check them out and consider modifying them for your state. I know that Suzanne and Susie have spent countless hours working on these and are as you can see getting success from them. Feel free, they are gracious in making sure that you take them and modify them. Give them a go and let's start some conversations about what's working in each individual state so that together we can get more efficient in finding these kids. Lastly, our next EI&R webinar that we will be having is in the spring. We will have people that work with early hearing and detection coming to talk to us about what they do in their states, with the infant screening. So, watch for details about this webinar coming up in the next weekend. And again, one more quick thanks to all the folks in New York and all of you for staying with us through this time today. We are extremely grateful. So, thanks again and I hope everybody has a rack cards -- I hope everybody has a Susie rest of the week. >> Thanks again, everybody. >> Goodbye. >> [ Event concluded ]