DOUG: Hi. Welcome to Feeling Through Live. My name is Doug Roland from The Feeling Through Experience. I'm joined with Richard Pierre and Tanisha from Destiny Home, a DeafBlind residence in Long Island and today we'll be talking about how life there has changed since COVID has been happening. Before we go into that a quick intro, for those of you who caught our last episode Feeling Through Live is a weekly broadcast. Right now it's on Fridays. We might investigate adding other days in the future but Fridays 11:00 a.m. Pacific time, 2:00 p.m. Eastern Time where we're hosting a list of topics that pertain to the DeafBlind community and beyond. We're very focused now on topics that pertain specifically to what's happening with COVID since that's a timely and important issue to discuss. So without further adieu, Richard is the supervisor of Destiny Home. If you can give an overview of what it is for those who aren't familiar.
RICHARD: Destiny Home is a group home on Long Island that houses dual diagnosis of deaf and blind. Some of our clients do have vision which two of them do. Five residents here, three girls and two boys. The three girls have no vision. They live here and go about basically life just like everybody else. They go to work, they don't have school but they have chain building where they perform activity and learn new skills if need be. They have access to different technologies there, staff [inaudible] but our residents don't necessarily use those, just they're offered to them there. As far as the home, they engage in like I said almost everything else anybody else would engage in, just a regular day. Our staff here who are so amazing they help them with their daily activities, if they want to order things on line, go shopping on line, go to the bank, whatever it may be we're here for them but it's at their discretion, it's what they request. We don't try to impose anything on them as far as options. We give them options but it's always their decision and we just really like to provide anything they need that they ask for.
DOUG: A question for Tanisha, how long have you lived at Destiny Home? It.
TANISHA: First I wanted to introduce myself. My name is Tanisha Verdejo. I've been living here at Destiny Home for [inaudible] I have staff that work with me to go out into the community. I do go to work. I am employed by Helen Keller National Center. I supply all their vending machines as well as I do some portioning of soap for the laundry services, as well as I teach sign language as HKSB. I'm a sign language instructor and I do that with the help of my staff members. I go out, I do a lot of different types of activities every day. We go out to eat at restaurants, I go shopping. We're pretty busy. Just trying to think of what else I do. Sometimes, you know I really enjoy surfing the web as well as now with new technology I'm actually able to order food, get my groceries on line and have it delivered. I still commute back and forth to my family's home, so sometimes I go back to visit family just for a vacation. But unfortunately when I go to vacation with family I'm kind of bored. I don't have much to do. A lot of times I spend my time reading. I love arts and crafts. I make different types of pictures. And I just wish…Well, I always go out. I go out to hang with friends, socialize. Just to go out with my interpreter or SSP to check out things, explore new things I’m curious about. I do travel. I always go on vacation. Every summer I go on vacation And in order to do that a lot of times the staff members here will actually drop me off and then pick me up.
DOUG: Great. Well thank you for that really great introduction. You know, let's just hop right into it then. You've given, Tanisha you've given us a good overview of what life is traditionally like there. How have things been different over the last number of weeks since Coronavirus has been happening? What changes have happened to your life at Destiny Home over that time?
TANISHA: Really I didn't [inaudible] work. I have to stay at home now and I just have to stay here. I just have to just constantly be here.
>> Just getting some clarification.
TANISHA: So, I have staff as well as interpreters help me. My interpreters help me just, they interpret everything that's going on around me, what's happening on the news. I actually love watching the news and know what's going on in current events. So the staff here are able to interpret the news for me because I can't hear it myself.
DOUG: So another question for you Tanisha, you know ‑‑
TANISHA: But you know I'm still going out for my walks. I still enjoy working out so I get outside and walk around. I actually really enjoy going out for walks.
DOUG: So another question, during this time, you know there's been a lot of messaging around social distancing and not being able to touch each other. You or someone who communicates through tactile ASL so I'm wondering how that has affected your life or how you feel about a time where touch is being said to be not allowed but you personally rely on it in order to navigate the world and communicate with other people. What's that been like for you?
TANISHA: Right. For me it's hard because I can't really social distance because I am dependent on tactile sign language and to have access I have to touch that staff member. So I really can't go out and do things on my own or avoid other people. I know that's what's happening right now and they're telling me that you're not allowed to do that. But you know because they say people can get too close and now I have to do things a little bit more on my own.
DOUG: So question for Richard. From the staff's standpoint, you know obviously again we're being told across the country to stay at home. To wait this out for further information as this develops. But obviously at a place like Destiny Home staying at home is not necessarily an option or not the same decision to be made by staff who work there and support the residents that live there. Could you talk a little bit about what this time has been like for your staff?
RICHARD: For my staff I know that it's a big change. The days are a lot slower because of the fact that they're not going out to work and engaging in the activities like they normally do. Just like it's difficult for Tanisha because she's using tactile sign same thing for our class keeping social distance is literally impossible. The girls have no vision compared to the guys downstairs. And for precautionary measures we have a great nurse here who goes through all the guidelines because I believe there are updates every day and she's always updating and put on an in service. When staff enter the building we have a vestibule that they take their temperature from the moment they enter the house before they can interact with anyone. They are asked do you have shortness of breath, are you coughing, do you have diarrhea or anything like that. Not questions we would normally ask somebody but just to be on the safe side because we have clients here who are a little older, and we want to keep them as safe as possible. After those questions, the staff members goes and washes their hands, they don't touch door knobs or anything like that. After they wash their hands we give them a new mask every day because they wear them for 12 hours throughout the entire day and usually the residents don't always have their masks on, they don't necessarily like it but for precautions we wear them. That's one of the main things that's changed as far as entering work, something staff have never had to do before the steps before you can even start your work day. Then after that, as far as throughout the day like I said usually staff would go to work but because there's no work we're coming up with schedules, we finally opened up the track for your program, we're going to be going for walks there now. We recently bought patio furniture so the residents can enjoy hanging out outside on a nice day. As far as paperwork, not much paperwork to do for the staff because usually we would document what they did at work and how they did at work for the day but unfortunately that's not something we're doing so now we're keeping daily logs of what they did at home and we're trying to brainstorm on ideas together as to what they might want to do in the household during this time. We thought the COVID‑19 thing would be over by May, and first we thought April then May so now we're hearing June so we're trying to hunker down and be safe as possible. Staff have been very mindful to let us know if they've come in contact with anyone who might be positive. We have them stay on quarantine for 14 days, if they don't show symptoms they can return. We're trying to be as safe as possible because their safety is of utmost importance to us.
DOUG: We're going to take a quick paws to do an interpreter switch. For those of us who are with us who aren't familiar with interpreter switching it's customary to have interpreters switch off signing which is what we're doing right now. So are we set on each end for our switch? Yeah? Great. So continuing, thanks for breaking that down Richard. It obviously sounds like your team is taking the necessary precautions to be safe as possible knowing that you know, you can only do so much during this time. I'm wondering you know, has any of the staff expressed to you any sort of concern around coming in? Given what's happening or have you had discussions around that?
RICHARD: Fortunately honestly all the staff here, even the staff that are, we have backup staff, all staff are more than willing to come in. I guess they feel comfortable with the cautionary measures the nurses have set up. I haven't had a call out really. The vacations, they all cancelled vacations, they're all here for us. They're the real heroes. They have been here every day doing what they have to do taking care of the guys. I, no one has expressed like hey how are we going to, or I don't feel comfortable because I'm scared of getting it. All the staff have been comfortable. I have had texts from other people saying if you need anybody let me know. It's been a blessing how much the staff care for the guys. Some are willing to come in for extra shifts if need be. Fortunately we haven't had the need for that. It's even better than it was before COVID started happening.
DOUG: That's a great case of a challenge like COVID happening that actually in this case is bringing people together and really bringing the best out of your staff it sounds like which is certainly really amazing to hear and definitely want to recognize what a tremendous job it is that it sounds like they're doing over there and really commend them for continuing to do their work during a time where that's obviously a lot more challenging for a number of reasons so that's really great to hear that your staff has been so game to continue providing the services they normally provide and sounding like they're going above and beyond as well given the circumstances. That's really great to hear.
RICHARD: Definitely.
DOUG: From your standpoint Richard we're talking about the procedural changes that have been implemented to create as safe an environment as possible but are there any other really discernible changes since COVID has been happening you know, whether, please go ahead.
RICHARD: Okay. Besides procedural changes the main changes I guess are some moods, we have a fairly young male resident in the home and he is very savvy with technology and he likes to set up new clocks and stuff like that. He has an iPad, he keeps up with the news. Someone like him has become a little bit more aware of everything going on. He's become a little bit more reserved because he's afraid of exposure. Even when we first started wearing masks in the house. He was like are you sick? Are you sick? He shied away from staff and the residents but as of recently he's noticed that we're only wearing masks for cautionary reasons. He actually came up here a few minutes ago before we started and he came up to say hi to the girls and the female staff up here. I would say he went through a change as far as when it first started and now he's going back to normal to how he normally is. Now the other male resident, he's very adamant about going to work. Extremely adamant. He's very stuck on a routine. I would say for the month of March he had a lot of trouble dealing with the fact that he wasn't following his weekly routine of movies, IHOP. Every day he would wake up and not a tantrum but he would be upset with staff that he wasn't going to work. What we did that was different is we had to find ways to educate him on how Coronavirus is affecting the world. We had to show him pictures of like back in March we would show him pictures of what was going on in China. We were showing him pictures of body bags. It was a bid morbid but it was the only way to hit home for him to understand you can't go to work, I understand that you are upset but this is for your safety because if we take you out and you have underlying health conditions you are more at risk than everyone else. It took about three weeks for us showing the pictures and what was going on in the news for him to get it and understand that hey this is the situation that we're in. Now that he knows he can order IHOP and Dunkin' Donuts he's fine now. He has plenty of DVDs, we put on movies for him all the time and he gets movies on line so he's become more accepting of it. He may not be happy about it but he's definitely in more of a jovial spirit, he's engaging with the staff and his demeanor is becoming more amicable now.
DOUG: Tanisha you were getting at this earlier but what has been the most challenging part of, since Coronavirus has taken hold? What has been the most challenging part of that for you personally.
TANISHA: Not being able to go out. That's been a challenge. Staying home all day is boring. Staying in the house is boring and all of us, we want to go out but we can't. I stay home, we play cards. I read. Those are kind of the activities I do. I knit as well. I read on my iPad with braille. That's how I access it and that's what I do all day with my braille display. I'll chat with some of the staff here and we do funny kind of conversation and activities while we're here in the house. We also get food delivered that we've ordered as well. And I place orders over the internet and then the food is delivered here.
DOUG: So Tanisha, another question for you. I've read during this time that people from various disability communities but including the DeafBlind community are sometimes a little bit, even more concerned from a health standpoint when something like this is happening because there's a concern that you know, if something were to happen health‑wise that the communication with a doctor or a hospital might be more challenging, and there are certain fears around that lack of clear communication leading to more complications. Is that something that is a concern of yours personally or anything that you have had to deal with personally in your life?
TANISHA: No. When I normally go to the hospital, you know, I go with staff. I'll have an appointment and there will be an interpreter available. So, that's typically for all of my appointments I'll have an interpreter at the doctor's office.
So again, I will go with my staff person, an interpreter will meet there and we'll use tactile communication at the appointment.
>> Just getting some clarification here.
TANISHA: To communicate I use tactile sign. And sometimes I can use print on palm which is abbreviated POP. That's when someone writes information on your hand they write out the letter so I can get information that way but I really use tactile sign language mostly so writing with print, I can't access print visually, so if there was a piece of paper that I was given you can use print on palm to give me information or tactile sign language so that I can access it.
DOUG: Richard.
RICHARD: I don't think she understood the question. As far as, I can help with her answer because she only gave you an overview of how appointments went prior to corona. A lot of appointments have been cancelled because doctors aren't necessarily seeing too many of their patients right now because of the COVID‑19. Fortunately our nurse is amazing and she's been keeping up with all of the appointments. She speaks with the hospital their primary care physicians are. She does updates with them. She did one yesterday over the phone. If there were changes of course those hospitals would have to open up so that they can see their patients. But we've been blessed that the guys have had great health for the time being. Some are losing weight because they haven't been going out to eat. There hasn't been much change in appointments because the fact that they're not going there in person.
DOUG: I see. Another question for Tanisha. You said you have been at Destiny Home if ever quite a while now. Can you tell me about how life has changed being in Destiny Home as opposed to how life was before you were at Destiny Home?
TANISHA: I have been here for 10 years. And the interpreter is just going to finish the question.
>> We're pausing for interpreting to catch up here.
TANISHA: Staff have let me know that things out in the community are closed, that I need to stay home and that is one way my life has changed because of COVID. I can't go to work. There's nothing to do there. There's no work to be done.
>> And interpreting just needs to re‑clarify Doug's question.
TANISHA: Before I was a part of a program called FAGES. There was a lot of hearing people part of that program. I was the only DeafBlind person. It was difficult to communicate. It was really difficult to communicate in that program.
DOUG: So could you speak more about what has been different about now being in Destiny Home versus the previous residence that you were living at?
TANISHA: There was really no similarity between Fages and Destiny Home. They are very different. Fages really there's more hearing consumers there a part of that program. I was the only, I was the first actually DeafBlind person a part of that program. And again that was quite sometime ago. I really didn't like that program because it was such a challenge to communicate because everyone there was hearing. So there was just, communication was just constantly unclear and would constantly break down because there was only hearing people there that didn't sign.
DOUG: I see. So it sounds like Destiny Home and the services they provide are a lot more geared toward helping you and living, having you live a more enjoyable life than your previous home, is that correct?
TANISHA: Yes. I really enjoy Destiny Home. It's much better. I have access to communication through tactile sign language. Again, as I said, Fages was a challenge for me because of communication.
DOUG: Tanisha I'd like to talk a little bit more about your employment. You were telling us a little bit about it before. I would love if you would go into a little bit more detail about when you are able to work, what work do you do, tell us a little bit more about that.
TANISHA: I work at the Helen Keller services for the blind. And I teach sign language. I teach sign language to their hearing staff and to their consumers. And I make sure the class is fun and enjoyable for everyone. The staff and the students learn sign that I teach them. And again, they're all hearing. I also go to the Helen Keller National Center where I refill the vending machines with soda, I check the vending machines, I collect the money that's in them, I give the money to the accounting department. I also make sure the soap dispensers are filled, if they're not I refill them. So I do a lot of stocking type work.
DOUG: There are, I know something that's important to the Helen Keller National Center is employment for the DeafBlind community. And I know that there's a lot of people who may not be familiar with the DeafBlind community that would make assumptions around the community not being able to do, to be able to work or do jobs that you are describing so I think it's really great that you are able to share your personal experience so that people that might not be familiar with the community can hear directly from you what it is you do for work and the many things that you like to do throughout your day. Tanisha, can you tell us a little bit more you mentioned your hobbies and other things you like to do. Can you tell us a little bit more about how you like to spend your time on an average day?
TANISHA: I enjoy being busy. I enjoy working with my hands knitting, reading, going on the internet and different sorts of things like that. I also like to make collages and decorate and be crafty. I also like to make cards, where I will draw things and then I will send them to family and friends. So those are some of the things, I really enjoy giving people things for their birthday or when they retire or what have you. So I like to make sure things are decorated and giving nice things to people I know. I also love reading Harry Potter. I love it. I can't get enough. I love reading it on my braille display. I connect my braille display to my iPad and that's how I read Harry Potter.
DOUG: I get made fun of all the time because I've never read Harry Potter. Everyone says I'm really missing out so you are making me want to start reading it.
>> And Richard signed that Tanisha is smiling under her mask.
DOUG: Thank you Richard for clarifying that. You are doing the right thing wearing masks.
RICHARD: I can see it in her eyes. I see a big smile.
DOUG: Richard, a question for you: You know I'm wondering if you could talk a little bit more about how long you've worked at Destiny Home and if you have had any prior experience with the DeafBlind community before working there.
RICHARD: Honestly I've only been working at the Destiny Home for eight months. I started off as assistant manager and within two months I got promoted to the supervisor. The only experience I have with the DeafBlind have been my great grandmother she was blind. The oldest I got to see her till was five or six so I wouldn't say that was real experience but I do have experience working in the OPWD field, I've worked with multiple different diagnoses. I worked at the center of developmental disability where there was a range of disabilities then I focused on CP for nine years and then I started working with autism and then I ended up getting an RBT license doing therapy, and I did that for four years and during that time while I was doing like independent contracting through that I found out about Helen Keller national because it was in the field of OPWDB and I didn't enjoy independent contracting, I preferred to work for a company. I was blessed by Laura [inaudible] and she gave me an opportunity for a management position and I did everything I could to prove to her that I was capable of handling it. I picked up the sign fairly quickly. I'm not fluent but I can hold a conversation and can understand people who are speaking to me. I will have the staff assist me because I also have deaf staff such as Raiza here. She's deaf and communicating with her, they prefer me to use ASL instead of spelling because they want me to become more familiar with it so I have another staff, Natalya, she's one of our hearing staff that has been very good at assisting with interpreting for me. She teaches me a lot. There she is. This is Natalya one of our other staff will.
>> Hi! And this is Raiza the deaf staff interpreting for Tanisha here. So the staff have assisted me becoming familiar with sign. No one has been hesitant to assist anyone else as far as if you don't understand something. I do have a staff member coming in shortly who she's the main staff members who says do not spell! You have to learn ASL. It's become a point to learn the ASL and make sure I can communicate with them on their terms so they get the sense that I actually care about what I'm doing and actually care about their community.
DOUG: And on that note you know as someone who has been at the Destiny Home for eight months now, obviously, you know, you work very closely with everyone there. I know there's only five residents there so I'm sure you have a lot of personal contact with everyone that's there. What have you learned about the DeafBlind community or what's your experience been like acquainting yourself with a new community over time.
RICHARD: That's been very, it's not challenging but it was very new to me. The fact that I can't necessarily wear dark clothing so if they have low vision that they can see what I'm signing to them against my clothing. Another thing is being sensitive to the fact that being that I'm someone who grew up around speaking and hearing people at times when you are having a conversation another staff might come in who is speaking staff they might interrupt staff who are signing to me not knowing we were having a conversation, you have to be mindful of those things to avoid being rude or feeling like you are discriminating against. Even far as contacting management it is not just about calling. Some staff need to video call or text. It was so different to me because if I needed staff I would try to call them and wait a minute, what am I doing? They can't pick up the phone and answer. I would have to figure out different ways to communicate with them and which ways are preferable for them. There's a new app for Sorenson, it allows video chatting 24/7. There's always an interpreter there. We'll probably be implementing that for staff and I so if I need to communicate something to them via phone and text wouldn't be the best way that's probably something new we'll be implementing. But as far as for me as I said I've work with so many different diagnoses as far as disabilities I'm open to learning. It's never a culture shock for me dealing with different groups of people and communities because everybody is different all over the world and you have to be mindful to respect their customs and stuff and just be as respectful as possible for the most part.
DOUG: Well said. Well, we have about a minute or so left here. Before we part ways, Tanisha, is there anything that you would like to say before we wrap up our conversation today?
TANISHA: Yes. I always love being with my staff. I love all their help. I love chatting with them. I love that they give me information about what's going on out in the news and in the world and they come to work to help me. They can communicate with me and help take care of me and you know, communicate and chat with everyone. So I really have to say thank you to them.
DOUG: And Richard, before we conclude this conversation is there anything that you would like to say.
RICHARD: The main thing I would like to say is that although I'm the one in the video I feel my staff should be on the video. They are amazing. I can sign and interact with the residents just as much as they can but in all honesty without them what I do wouldn't even matter. I think that everyone should be aware that the ESPs and all the life coaches that are out there right now during this COVID virus they should be praised just as much as nurses and doctors because if they weren't coming in to work who would be there for these guys and that would be a horrible situation if they were left out by themselves you know what I mean? I can be gone for a month and the house would still run. I have no words to express how much I appreciate them.
DOUG: Thank you so much for stating that and thank you both for joining us today for this conversation. I'd like to extend my thank you to the rest of your staff as well for the amazing job that you have told me they're doing. And as you just put really beautifully, what they're doing is so important, and you know, though it may be cliche to say it's very true but those are the real heroes during this time, people that are out on the front lines so to speak providing really necessary services. And quite frankly taking a risk to do so but one that obviously has a great reward and is very necessary to many people. Tanisha thank you so much for joining us today and sharing your experience. It was really nice to meet you and I hope I get to speak with both of you again soon.
TANISHA: Thanks for having me. It was very nice to meet you Doug and thank you.
DOUG: That concludes our second episode of Feeling Through Live. Again apologies for the technical difficulties. I will certainly be having another long correspondence with Zoom to figure out why that's happening but we'll continue to provide these conversations on a weekly basis so continue to follow our page for new conversations. They'll be every Friday and we might even be incorporating some other days as well. Thank you so much as well to our interpreters and our captioner for making this accessible and we look forward to bringing you another episode next week. Have a great weekend. Bye.
