 Major sponsors for Ableton on Air include Green Mountain Support Services, empowering people with disabilities to live home in the community, Washington County Mental Health, where hope and support come together. Media sponsors for Ableton on Air include Park Chester Times, Muslim Community Report, WWW, this is the Bronx dot info, Associated Press Media Additors, New York Power Online Newspaper, U.S. Press Corps Domestic and International, Anchor FM and Spotify. Partners for Ableton on Air include Yahad of New York and New England, where everyone belongs, the Orthodox Union, the Division for the Blind and Visually Impaired of Vermont, the Vermont Association for the Blind and Visually Impaired, Central Vermont Habitat for Humanity, and Montpelier Sustainable Coalition, Montefiore Medical Center of the Bronx, Rose of Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx. Ableton on Air has been seen in the following publications, Park Chester Times, WWW, this is the Bronx dot com, New York Power Online Newspaper, Muslim Community Report, WWW dot h dot com, and the Montpelier Bridge. Ableton on Air is part of the following organization, the National Academy of Television Arts and Sciences, Boston, New England Chapter, and the Society of Professional Journalists. Welcome to this edition of Ableton on Air, the one and only program that focuses on the needs, concerns and achievements of the differently able. I've always been your host, Lauren Seiler. Arlene is not here today, but we would like to say a special thanks to our sponsors, Washington County Mental Health, Green Mountain Support Services, and many others, including the partnerships with Einstein Hospital of the Bronx, Montefiore Hospital of the Bronx, and the Rose of Kennedy Center of the Bronx, and many other supporters and sponsors. With us to discuss the important topic of COVID and people with special needs, and a very important grant in New York City and the state of New York with COVID and people with special needs is Dr. Karen Bonak of Einstein Hospital of the Bronx, and Joanne Siegel of the Rose of Kennedy Center. Welcome to Ableton on Air. Hi. Hi, how are you? Can you tell us a little bit, well, can you tell us a lot about the grant and why and how it got started and the importance of it? Maybe I'll start with that. So I'd say a little over a year ago, I looked around and I saw that there was likely a need for vaccine education for people with developmental disabilities. I actually reached out to some of our clinicians and our leadership and particularly, you know, in different languages to get information out there. And I think people thought that maybe I was getting a little bit ahead of the curve. The vaccines were just starting to roll out and said hold off. At the same time, I contacted the New York State Developmental Disabilities Planning Council and put forth the idea of a vaccine education project aimed at developing different media initiatives and getting out science-based information and they agreed that it was a good idea. So this is just a broad overview of what we were funded for one year to produce different, you know, web and in-person segments geared towards various populations of persons with developmental disabilities, Spanish speakers, Chinese speakers, et cetera. And we also did some research and lo and behold, some of those folks from the clinical staff who initially were like we shouldn't get out in front have actually been some of our best spokespeople and been completely supportive of our project. So that's just a brief overview. How simplify or how do you have to simplify this information, you know, because people with special needs, depending on their challenge, whether it be autism, learning disability, they learn at a different speed and get information at a different pace. So how do you have to simplify, you know, people are also scared of, oh my God, vaccine, I'm scared to take it. How do you simplify this information for people with special needs? Well, two ways. Number one is we have people who have intellectual developmental disabilities speaking, making the videos. They can be found on our website. I think we can share them with you after the links. So they're speaking the same language. You're getting it from your peers. The other means by which we do this is the experts that we engage to do this education or experts in working with people with developmental disabilities. And to be honest, clear, plain, lay language is good for everybody. So, but not to be confused with being dumbed down. I have to say every time we do a webinar. Why did you say, I apologize, why did you say dumbed down? Some people think or may have perceived that people with intellectual developmental disabilities are not able to grasp concepts or scientific concepts. But you can transmit those concepts with a three-syllable word, maybe instead of an eight-syllable word. There's always a better way to say it. And those are principles of universal design. And we have found that the audiences that we have put on numerous webinars for, people with DD, their family members, easily grasp what COVID is, how the vaccines work. We explain it in a way that would be universally acceptable, which is the way we need to do it. So it is, and you know, they often comment that this was very respectful. You gave me science-based information in a way I can understand. So, Joanne, do you want to chime in with this as well? Yes. So what we do for each of the presentations, the speakers, we go over the slides to make sure that individuals that might be viewing understand them and can relate to them. We have included special presentations with the New York State Samus Self-Advocacy Association of New York State and have had panelists who are individuals with intellectual or developmental disabilities participate in our presentations. What we have found essentially is that many people are aware of what's happening. They watch the news. They hear the news. They are concerned. And they are very responsive to what is being presented and they ask many questions. I will say that at times for people who are living at home, remain at home, we do get questions about my family doesn't want me to get the vaccine but I would like to get the vaccine. And that comes up. And we try to address it as best we can. And we do indicate that that person needs to be discussing it with their family member because that is then it becomes an individual issue and a family issue. But these are valid, very valid questions that come up. And to date, I have to say that many of the people that you might think would not understand what is going on, they actually understand. They've been listening and they are very responsive to the education pieces that are going out there on the media. So I know we're pleased with that. And so that's an important point to make. Now, okay, so you deal with individual households. Is the training a little bit different or slightly different if you go into a group home setting, yes or no? And how? Okay, we have not gone into group home settings per se. Let me explain the background a little bit of some of the presentations. Essentially, we do our presentations as community outreach. And so we're presenting to family organizations, maybe advocacy groups. And we will go into this a little bit from various ethnic backgrounds. We have agencies that work with families that are Hispanic, Chinese, Korean individuals from Bengali backgrounds that we've made presentations with. We use interpreters. We use American Sign Language. So we're going to a very broad community outreach. Including, if you don't mind me asking, including Hebrew in case somebody needs that. Would you do other languages other than? We do have some limitations, okay? So we have limited to the five major languages other than English that are spoken in the United States because we just don't have capacity to include every single language. But we try our best to reach those major groups. And so to get back to who are the presentations for, therefore, family members and individuals, they can come on if they're living in the community. We work with agencies because, and I can go into some statistics on that. Organizations have asked for presentations because their staff are hesitant perhaps in getting a vaccine. So we've made many presentations to agency organizations for their staff, as well as their individuals. And we have also worked with care coordinating organizations that would be working directly with families living in the community, okay? And so that gives you an idea. Example of care organizations that, go ahead. Okay, in New York State, there are seven care coordinating organizations that work with families to develop plans of care for individuals that are eligible for state funding through the office, a New York State office for people with developmental disabilities. In New York City, there are three. Care design of New York. Yeah. Tri-County care. Yeah. And ACA. And those are the organizations. ACA stands for? Agency for Community Alliances, yeah. Okay. Now, how does the, I mean, this might have to do with it, but I noticed that you guys are also part of the disability university or something along those lines. How has this COVID education been part of that? Or like, is it more part of that? Because also you're helping the medical school teach this as well. And so... Well, let me just clarify that relationship. Okay. I'm sorry. No, no, no. So there's a lot of acronyms, like short names that are very confusing for everyone. Joanne and I co-direct the Rose F. Kennedy University Center of Excellence in Developmental Disabilities, UCEDD, okay? UCEDDs or Programs Without Walls. But as a requirement of the Federal Developmental Disabilities Act, they are required to be hosted within a university. So that's our relationship, is that the Einstein College of Medicine, where Joanne and I both hold faculty appointments. So Einstein is the host for our UCEDD. So our UCEDD, like you wouldn't drive up to Einstein and see a building that says UCEDD on the outside of the building. But we work closely with the Rose F. Kennedy, I would say Children's Evaluation and Rehabilitation Center. Another acronym, CERS. There are many adult self-advocates affiliated with that work, so it's not a great name. But that's... And there are 67 of these UCEDDs, and they all work on the type of activities we do. So a UCEDD has a four-fold mission, okay? One of them is Community Training and Technical Assistance, which is what... This is a large part of our vaccine education. Let's see if I can get all this right, okay? There's Information Dissemination, which is the emails, the Twitter that we put out, all the ways we disseminate content. There's Research, I have been taking the lead on, and then there's Advocacy, right? Is that it, Joanne? Yes. So these vaccine grants really encompass much of the... No, two UCEDDs are alike. They all carry out their missions in different ways, depending upon the catchment area. Our catchment area, the area of people we serve, is the five boroughs of New York City, as well as Long Island, which is... I'm not sure where most of your listeners are from, but it's... Well, we broadcast because, you know, special needs, topics and special needs is global, not just local. So we broadcast, you know, I've been a broadcaster for 30 years in this area, both in New York and now Vermont. So Vermont, you know, is New England, so you never know who's watching or listening. That's why we do these topics, because they're important. But yeah, I see your point there as far as that. Can I just go on? So many of the UCEDDs are doing some sort of vaccine education, and in fact, I think it was 11 of us. I think, right, Joanne, 11 UCEDDs received some special funding from the Centers for Disease Control to carry out this work. So that's a separate small grant that really complements the larger grant we got from our New York State Developmental Disabilities Planning Council. And as a group, we meet once a month to kind of share resources. Does anyone have a video in Korean? Oh, I have a video in Korean. Does anyone have a video of a mom in ASL? And does anyone have an infographic? So we actually, we work on a national scope as well. Now, we understand, I mean, as the nature of things, people are also scared of taking the vaccine. Now, my question around this is, are there, now you said videos. So how do the videos come into play when you're doing this COVID education? If someone is scared to take the vaccine? So there's two types of videos. One would be more like public service announcements on, not, it's explaining the importance of getting a vaccine. That's one component. But areas that really like anxiety and depression that have come up, particularly during the COVID pandemic, we have offered actual webinars where our psychologists have presented on mental health issues during COVID, anxiety, depression. And then for children, unfortunately, sometimes there's bullying around COVID. How is bullying play into this? It's very interesting because I didn't realize this until we spoke with some of the family members and that's why we kind of frame our presentations based on the feedback that families give us. So one of the families had mentioned that their child had gotten COVID and then, of course, there was a quarantine and the child then, but when the quarantine was over, came back to school and then experienced bullying by other students saying, we're not gonna associate with you, you had COVID, we might get sick, we don't wanna be near you. And so people have to learn how to respond in a fashion that is not hostile, but how do you respond to people when they are bullying? And so techniques were provided during that webinar which were really helpful. By the way, in the chat, I did put the links for our social media and so that's in the chat. Okay, so we'll go over that after the show. How does self-advocacy or how do the self-advocates of New York State help play into this education? Okay, so on December 10th of just this past year, at the New York State statewide conference for Sanis, Self-Advocacy Association of New York State, we had a 45 minute, no, it was a little longer, it was about an hour and 15 minutes, sorry, workshop on COVID-19 in which basic information was given by a medical person, but the rest of the presentation was really a panel presentation by self-advocates and so it was titled, COVID-19 Self-Advocates Speak Out. And they talked about their personal stories during the period of COVID and then they fielded questions remotely, this was all done remotely from the audience. So that was all latest event that we... Was this with sign language interpretation as well or no? No, Sanis did not provide sign language interpretation. It was their conference and we were invited to give a presentation, yeah. Okay, so in terms of what other activities or what other education, I mean, both of you can chime in. What other education is really important that we can talk about with the COVID situation? That's extremely important. Karen, do you want to talk about the clinics that were held? Sure. Yeah. So at the Rosef Kennedy Children's Evaluation and Rehabilitation Center, in June we had our initial clinic for children. I think it was in May that the vaccines were authorized. From five and up, right? No, May was they were authorized for 12 and up. Okay. In October they were authorized for five and up. Yeah, no, that's okay. It's hard to keep it straight. Because little children, infants are not able to get it yet. So it was authorized for children 12 and up in May by the Food and Drug Administration. In late June, our center, our clinical center, held a clinic and what was different about it is that we had, that one was staffed by I think primarily some of our, we have dental, we have actually dental clinic that provides services to people with developmental disabilities on the campus, on the site with the main health center there. And so some of the residents, those are people who are getting trained in dentistry, went there and they brought with them different toys and kind of distractions to help children who were really, really nervous, kind of with behavioral techniques in terms of distraction and feeling more comfortable. And then the follow-up clinic was in July and then it was just last Friday, I believe, right? We held another clinic for the five and up for children. And the idea was that to give parents the peace of mind, for many people with developmental disabilities presenting for medical appointment is anxiety producing on its own. What, what, okay, well, anxiety comes in many forms, correct? So how does, how does the anxiety play into, obviously you're going to try and calm the person down and then they get scared when they see a needle or vaccine. So, so go ahead. Yeah, exactly. So these are, so the clinics that are held or again, it's not like going into your CVS where it's the sales clerk checks you in and then the pharmacist, these are people who like those who deliver the webinars and are able to speak in sort of plain language. These are people who are skilled at understanding these special anxieties and or sensory issues, right? That can often be more common and they're sensitive to that. They're able to take more time. It's not like, okay, we just have five minutes, we have to vaccinate the next person. So there's time, there's distractions, there's clinical skill. There was a room for people who needed to just kind of like really decompress and not have so much going on. So, yeah, they do that in a special Olympics. They have a special date. They have a special room that turns around and, huh? Okay. Yeah, we lost power from it. Are we okay? Okay, are you still recording? Yeah. Okay, sorry, let me repeat. Yeah, special Olympics does that very thing. Like at the end of each event, they still have another event. They can go and decompress and then come back and do more activities. So, yeah, certain other organizations do the same thing pretty much. But yeah, so go ahead. Can you explain a little bit more? Well, I think that's pretty much what I wanted to say. So it's an environment that is sensitive to the needs of this population who has the time and the tools and the clinical skills. And I believe that every child who presented to get vaccinated, they were able to successfully vaccinate and sometimes these parents had previously brought their child to another site and were not able to. So that's a real success. In your opinion, what causes people, especially some people with challenges, you know, developmental disabilities, what causes people not to want to get vaccinated? Is there a, are they that scared? I mean, what do you think? I mean, in many ways, I'm not talking about the children who don't make the decision when they're under 18. But in many ways, it's just like someone who doesn't have a developmental disability. We understand that there's a lot of the same misinformation and myths that are out there are also reaching. So do you think the media, do you think the media is just giving too much of that? Not the mainstream media. No, I'm saying there is, you know, it is known that there are 12 individuals. I think I read this somewhere who are responsible for spreading 75% of the misinformation on social media. Okay, the mainstream media, your ABC News, USA Today is not spreading this information. So no, that's not true. But people sometimes see something on Facebook and then they share that link. I know there are attempts to try and stop that if something is to label some of those posts of misinformation, but they're out there. People have, I don't even want to give them any credibility by repeating them. But what our webinars in particular do is it goes through from a scientific point of view, this is not possible. Yes, the vaccines did come onto the market quickly in terms of a certain type of vaccine. But just so you know, the process, right, this mRNA messenger RNA process has been around and worked on for quite a long time. I can't remember. At least 10 years. At least 10 years. You want to chime into that? Yeah, I also want to mention this and Karen will add to this. We've been involved in surveys of parents' attitudes toward the vaccine. And what it has shown us is that for young children and children with intellectual and developmental disabilities, the main concern of the parents is actually understandable. Their concern is they worry about will a vaccine cause more harm to their child in terms of their disability than not getting the vaccine. And some people, if you don't mind me chiming in here, some people claim religious exemption, which I pretty much, some religions don't allow vaccinations. So... There is, to my understanding, I don't believe there, I believe the Pope has endorsed vaccinations. Yes. My understanding is, I think it's like two, I think it's Seventh Day Adventist and Jehovah's Witnesses. Amish also. Yeah, I have some issues with, let's say, blood transfusions or something else. But that's not the main reason. In fact, that is among the people who might have some concerns about vaccines, like we split the sample, people who were eager to get it, and those who were not so eager among the not so eagles. That was perhaps the lowest reason. The other reason were concerns about the child's development, et cetera. But just to put a fine point on what Joanne said in our last survey of parents, we actually found that the willingness to get the vaccine was higher for parents of kids with developmental disabilities than it was in other research for parents of children in the general population. They're actually more eager, okay? And they're, when we ask what would be a big reason why you might not get it, very few of them mentioned, for that group, it was interesting misinformation. So I, you know, misinformation isn't the biggest reason. It's concern. And the other concern that's special to this population was a question. Were there, and this was with adults as well, were there people with developmental disabilities in the sample? Right? So they didn't ask when they were enrolling people in the vaccine trials, okay? But we know that, you know, by chance there was a likelihood that there were people, but they didn't ascertain that they didn't ask that. And this is actually, this is a side topic that... I'm sorry, I apologize. This is a side topic that maybe in the future we can do another show on about the inclusion of people with disabilities in research. But statistics about disabilities are not often included in these trials, so we don't know. Well, talk about research for and about people, especially since you said that. Yeah. You know, vaccines such as the polio vaccine and others in years past, do you know if they, or did they just start to include people with special needs in like research and development of vaccines? Because vaccines do save lives. So, right? So, do you know, well, since you're a medical doctor, have they... I'm not a medical doctor. Okay, I apologize. Nothing I say should be construed as medical advice. I'm actually a PhD in social work and research. You're a PhD, I'm sorry, I apologize. Yeah, yeah, yeah. I apologize. But, okay, have they just started including people with special needs? This has been going on for years, is it more recent? Absolutely, Larry, this should be another show. Okay. Okay, I'm sorry. Joanne and I are now working on a... No, no, no, I don't mean... I'm saying there's so much. We are working on a grant application to look at what are the roadblocks to including people with developmental disabilities and research. I just read a paper that came out a few years ago. Well, a paper that came out two days ago in the New England Journal of Medicine calls for more disability inclusion and research, of course. And then I have a paper that I read from three years ago that the number of studies that even ask if a person has developmental disabilities is very small. So we don't know. So this is an area that we need to expect. Okay, so let's get back to COVID, the COVID situation. So what is, since we only have some time, a couple of minutes left, what is... Well, obviously we don't know the future of this COVID vaccination. What might be the future of this COVID education and how much more will it go on, do you think? Well, we are just... We are hoping to renew our grant from the Development and Disposed Planning Council with a little bit of a different focus, to be honest. One of the main focus will be additional funding for different languages. It may sound like a small thing, but you can't imagine how many hours a week our team spends seeking out translation and interpretation services, making sure we have the correct American Sign Language interpretation. We have found that there is a great need for being culturally responsive. So that is a new kind of shift, not new. Joanne, do you want to add to that? Anything you want to add to that piece? No, I think that... Well, I think that Karen has said it succinctly. I do think, though, we originally were funded for the one year. We will be getting funding to go forward at least another year because no one anticipated the length of time that the pandemic would be with us and now with different variants emerging. We kind of have to then sit back and reassess where we're going. And so a little of this, the planning is on a day-to-day basis based on scientific information coming in. So I think we have our work cut out for us. I think there'll be more... Even after the pandemic, there will be an analysis of how people responded. How do we respond to the next pandemic that may arise? And how do we work with people with disabilities? Because we still are looking at... There's a lot of ethical issues in terms of... New York State has been very good in terms of distribution of the vaccines. As far as... Now, quick thing. So you put this out in webinars. You put this out in computer information. You put it out on Facebook. You put it out in pamphlets, correct? No, mostly in, I'm going to say, in internet and social platforms. Although, actually, I should mention we had an excellent webinar that was training done by our interim director, Dr. Lisa Schulman. She's a developmental behavioral pediatrician. It was specifically focused on answering the questions parents would have about vaccinating their children. That was extremely well-received, so well-received, in fact, that the Centers for Disease Control actually has that on their website. And that was written up, the transcript, a summarized transcript, or recording of what was said, was written up and published in Exceptional Parent. Okay. Just coming out. Yes, just coming out. Out of the press. Out of the press. So can you tell people where to turn, the website where people can get this information and how, you know, about the COVID webinars and so on and so forth? So I put in the chat, we have our social media platforms, and I put in the links on the chat. And so that's the best way to reach us. So we have a Twitter handle, and we have LinkedIn, so on our Facebook page. And our website actually lists many of our webinars. If one were to go to the Rose F. Kennedy, you could just put in RFK. RFK. Space. Space. U-C-E-D-D. U-E-C-E-D-D. No, no, no. You know what? I'll put it the link in because there's a lot of acronyms here. I'll put the link in. Okay. And this is all within the Albert Einstein College of Medicine and do a search on that for our use it. And it has our, actually the name of the, we try to have a popular name for the project. And it's called Vax Fax, DDNY. I'm putting the link in right now to the Vax Fax, DDNY. Dot.org, right? Well, no. I put just the whole link. You could just click on that. Okay. Okay. Let me, really quick. It won't get rid of you. Let me just, I just want to. Mm-hmm. So it would be, okay, www.vaxfax.ddny. Okay. Mm-hmm. And then, so then it also links people to the, the Albert Einstein website as well. Correct? It's through that. Yeah. Yeah. All right. Well, I would like to thank you for joining us on this edition of Ableton. For more information on the COVID education and what New York City is doing through the, along with the Centers for Disease Control and COVID education and people with special needs, you can go to the Einstein's website. First is www.einsteinmed.org, correct? Einstein. .edu. They just changed it. .edu. Okay. So www.einsteinmed.edu or www.vaxfax.ddny. Well, we would like to thank you for joining us on this edition of Ableton, and there will be plenty of more shows on medical information when it comes to people with special needs. Thank you so much. Thank you. Dr. Karen Bonak of Weinstein Medical Center and Joanne Siegel of the Roosevelt Kennedy Center. You sit. Thank you so much. This puts an end to this edition of Ableton on Air. As always, thank you to our sponsors, Washington County Mental Health, Green Mountain Support Services, and many other partners including Einstein Hospital of Bronx, New York, and the Roosevelt Kennedy Center of Bronx, New York as well. I'm Lauren Seiler. See you next time on the next edition of Ableton on Air. Major sponsors for Ableton on Air include Green Mountain Support Services, empowering people with disabilities to live home in the community. Washington County Mental Health, where hope and support come together. Media sponsors for Ableton on Air include Park Chester Times, Muslim Community Report, WWW, this is the Bronx.info, Associated Press Media Additors, New York Power Online Newspaper, U.S. Press Corps Domestic and International, Anchor FM, and Spotify. Partners for Ableton on Air include Yahad of New York and New England, where everyone belongs, the Orthodox Union, the Division for the Blind and Visually Impaired of Vermont, the Vermont Association for the Blind and Visually Impaired, Center Vermont Habitat for Humanity, and Montpelier Sustainable Coalition, Montefiore Medical Center of the Bronx, Roosevelt Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx. Ableton on Air has been seen in the following publications, Park Chester Times, WWW, this is the Bronx.com, New York Power Online Newspaper, Muslim Community Report, WWW.H.com, and the Montpelier Bridge. Ableton on Air is part of the following organizations, the National Academy of Television Arts and Sciences, Boston, New England Chapter, and the Society of Professional Journalists.