MediHelpz Live w/Sandra L Washington
This podcast dives deep into the heart of healthcare through the eyes of patients.
Each episode, we explore the multifaceted experiences of individuals navigating the medical system.
Expert guests will include doctors, nurses, and mental health professionals.
The information shared on this podcast does not replace medical infomation provide by your clincian.
MediHelpz Live w/Sandra L Washington
Each One Teach One: Supporting Neurodivergent Patients in Healthcare
Dr. Samika Cosey joins Sandra L to unpack the often-overlooked healthcare experiences of neurodivergent patients – those whose brains process information differently due to conditions like autism, ADHD, and dyslexia. Drawing from both personal and professional expertise, Dr. Cosey explains how healthcare systems frequently fail to accommodate these differences, leading to misdiagnosis, delayed care, and unnecessary suffering.
The conversation takes a powerful turn when Dr. Cosey reveals her own journey: as a child, she lost the ability to speak following a seizure. This transformative experience shaped her mission to ensure others receive the support she once needed, eventually leading her to found The Cozy Project – an organization providing critical resources to neurodivergent individuals and their families.
What emerges is a thoughtful exploration of advocacy's crucial role in healthcare. When doctors dismiss parents' concerns about their children's development or fail to understand neurodivergent needs, families must fight harder for appropriate care. This burden falls especially heavily on underserved communities, where information about available resources often fails to reach those who need it most.
Sandra and Dr. Cosey highlight how financial barriers create additional obstacles, with insurance limitations and program cuts making specialized services increasingly inaccessible – particularly for adults over 23, who face even greater challenges securing necessary support. Yet they offer hope through practical solutions, from navigating IEP processes to connecting with community resources nationwide.
At its heart, this episode embodies the "each one teach one, reach one" philosophy – reminding us that knowledge shared becomes power multiplied. Whether you're neurodivergent yourself, care for someone who is, or simply want to better understand diverse patient needs, this conversation offers invaluable insights into creating more inclusive, responsive healthcare experiences for all.
Connect with The Cozy Project at thecozyproject.com or 224-409-8811 to learn more about resources for neurodivergent individuals and their families.
Thank you. Good day everyone. Hopefully everyone is having a beautiful day. Not sure what time of the day or evening you're watching this, so if it's in the daytime, I'm certainly hoping that you're enjoying your day. If it's at night, I'm praying that you had a beautiful and peaceful evening. Thank you so much for joining in on another episode of Speaking with Sandra L.
Speaker 1:It's all about the patient experience. As I stated before we came on to Dr Samika, who is our lovely guest today. You know so many times we you know especially when I say we, I should say I so many times I say why they not invite in the patients to the table to be a part of the conversation that's going on about the patient. You know, the guessing of what the patient wants versus what the patient needs is so often. You know the guessing of what the patient wants versus what the patient needs is so often, you know, disconnected because the patient is not at the table.
Speaker 1:And some, you know I started thinking and saying why don't we create our own table and have those that be the powers that be say you know, we love what you're doing and we want to bring if. You know, we want to make sure that we're doing what we need to do so that the patient can experience the most optimal healthcare. And so let's start speaking with Sandra L, which is under the Choms Many Health Foundation umbrella. And so today, and Dr Samika, if I'm saying your name wrong, please stop me and correct me, okay.
Speaker 2:No, you have it correct.
Speaker 1:Today we're going to turn that focus on the neurodivergent patient, and I have a very close friend who has three awesome, awesome when I say awesome, awesome neurodivergent children. Two are adults and one is coming up now and I often say, when, with all of those things that they do, how are they able to do all this? And that's supposed to be neurodivergent, because I'm going to be honest with you, I mean I know somewhat what a neurodivergent patient is and I don't know what they look like. What a neurodivergent patient is, and I don't know what they look like and I don't know what they go through on an everyday basis, especially when it comes down to receiving medical care of any kind. So could you explain to the audience what is a neurodivergent patient?
Speaker 2:Well, thank you. First I want to thank you so much for having me on the show. So when we think about the word neurodivergent, it just simply means, and it describes, someone who learns differently. So they process information differently, they think differently, they grasp onto the stimuli within the environment different from what most people say a neurotypical individual would do. And then the neurodivergent experience is different for each and every person and so it looks different among, uh, different individuals, just dependent on that person and who they are.
Speaker 1:Okay. So, with that being said, then me looking at, like I said, the two individuals who she's talking about and I can't tell whether they're neurodivergent or not when does that neurodivergency issue like? When does that come up? When does that experience for them come up? Does it come up at different times?
Speaker 2:When does that experience for them come up? Does it come up at different times? And so it will just depend. And so let's say, a lot of people may look at someone, let's say autism in particular, and so autism is a spectrum, and so, basically, what one person with autism looks like, another person may not look like. So a lot of people who are neurodivergent some people don't know that they are unless they state it to them, but that doesn't mean that they don't need certain things within the medical field or they don't need the assistance, just because some people may see them as not being neurodivergent.
Speaker 1:Okay. So it's basically a silent medical condition, a silent health disease condition when you're neurodivergent. A lot of times I'm not going to say all of the times, but a lot of times it's silent because it's something that's going on internally that we on the external side, we just can't see. Correct.
Speaker 2:So it would depend. It would depend on where they currently are. So when we look at neurodivergent individuals, it is individuals who have autism, people who have dyslexia or anyone who has, like, adhd, and so it basically affects the brain and how they respond to information and process that information. So we may have some children who have, let's say, asd or ADHD, and so you may be able to tell by some of the behaviors that they exhibit, tell by some of the behaviors that they exhibit, while others mainly due to no real challenging behavior. But their deficits may be more in the social aspect, in a social environment.
Speaker 1:Okay, Now I'm going to ask you a question, and I know it wasn't on the question list, but you just brought up a really valid point that we need to have addressed, and that's this is it only a chat like can adults become neurodivergent, or is it like something that's been hit? They've always been that way, but then it's something that doesn't come out until they get to adulthood.
Speaker 2:That is an amazing question. I just had this conversation with someone a few days ago and so when I was growing up, my experience I had an uncle who was neurodivergent. I had no idea anything about his condition because it often wasn't talked about and it wasn't addressed in certain communities. And then we still have individuals who, when they were younger, maybe they weren't assessed or maybe the parents did bring up things to the doctors and the doctors didn't go forward with that assessment. And then in adulthood, as we have more research and doctors are, some doctors are going to assist a little more. Now they're being assessed and then their needs are being taken care of. But a lot of the times you may run into doctors to where you're telling them some of the issues that you are facing and they're brushing it off and so they're not performing those proper tests, they're not giving you based on the whole person, and so there are some adults who possibly had different conditions when they were younger and now didn't know it.
Speaker 2:At that time their parents didn't know it. They knew something was a little different, but they didn't know what it classified, as I actually had a friend of mine who went through his entire life and wasn't diagnosed until he was in college because a teacher pulled him to the side after school and talked to him about what she was noticing. And so that's also important, because there are times where educators who can also see different things and step in and try to make assist.
Speaker 1:OK.
Speaker 1:I thank you so much? Yes, because that happens a lot. It happens a lot with everyone, regardless of their culture, but especially within our culture. Yes, because so many times we're being pushed over and not looked at for things that are going on. Simply because it's easier and, once again, the mission of this, this podcast, is to let patients know use your voice. It's the most powerful school you have. So if you know you're going through now I mean, of course, if you're adult now you know it's too late to say, okay, well, when you was a kid. But even now, if you are noticing something within yourself and noticing something, or someone mentioned something to you, take the time to actually have the doctor address that with you. Don't keep letting them push things off. They shouldn't be pushed off because it impacts you and, bringing in the family history, part of this, it impacts you and what it doesn't impact to you is it impacts your family.
Speaker 1:So if you don't check these things early enough your kids, your grandkids, your great-great-grandkids, whoever is in your family it has an opportunity to really negate any progress that's made, especially when it comes to medical care, because you'll be looked at and say, oh, that's a non-compliant patient, that patient is not following what they're supposed to be following and it's not that. It's that internally, and sometimes externally, you have some things going on that are just not being addressed and I say it all the time and there's nobody coming to save our community Absolutely. So we have to do it right, we have to do the work, and that work means this here we need to use it. We need to speak up. We need to speak often and I say speak loud.
Speaker 1:And when I say speak loud, I'm not talking about speaking like going in there egotistical, like you want to rant and you got to yell and scream. That's not what I mean. What I mean is speaking loud enough and with your own precision, so that they understand that, hey, I'm not here to play, I'm here to take care of my business. So I thank you so much for addressing that point with me. Now the other question I have for you is this what drives you to help the neurodivergent patient Like what's the must for you or the mission for you.
Speaker 2:So my mission? I will share a little bit more about my backstory. So I do have an uncle I mentioned who is neurodivergent. When I was younger, I had a seizure and I lost the ability to talk. They were able to help me to be able to speak how I'm speaking today, and so I wanted to make an impact not just an impact on me, but the impact on the lives of other people, and then, as I'm helping them, I'm also helping their families.
Speaker 2:One of the things that you mentioned earlier was the fact that a lot of especially in our culture a lot of our children are diagnosed with different things at a later age, because a lot of doctors don't hear out what the parents are saying. They just brush it off as it being something else, and so I want to educate the community and ensure that our voices are also heard and that we are advocating for those. A lot of the kids that I work with, or adults. They are non-verbal, and so what that means they don't have those vocal skills to communicate. Some may use sign language, some may use a communication device, and so, but I want to ensure that I am helping them to not just advocate for themselves, but also their families to advocate for them too and you know and I so appreciate what you just said, because what you just said goes to another one of my models and many people I would say all people that talk to me.
Speaker 1:When it comes down to patience on any level doing anything is this Each one teach one, reach one. If that person hadn't taught you, you wouldn't be able to reach someone else. So you're taking that each one teach one model that we so often hear, that we don't push far enough because we drop off the reach one we should be each one teach one, reach one. And in so doing, that empowers more patients. It empowers more caregivers, the internal network, that support network that's so important to patients. It empowers them, it encourages them, it causes them to be educated about what's going on. But if all we're doing is each one teach one, okay, what you want to do once you get taught what you're doing with that right, that gift that you've given because you're taught how to do something, that's a God-given gift. None of us are giving gifts just to sit and hold on to it.
Speaker 1:We are all giving gifts to share, which is why I'm thankful again to you that you didn't say okay, well, I was taught how to talk, I ain't worried about nobody else.
Speaker 1:You was like no, no, come on y'all and like you said some can't talk I mean some cannot talk for various reasons but for those that can talk, and encourages them to know your backstory and to know that, hey, if she did it, I could do it too. So I thank you so much for telling us that story, and I also bring up an important part that I want to add to this. Is this what you're teaching now and you're teaching young? You know you're teaching young patients now, right, there's programs that Dr Regina Beer and I got to give her a shout out knows exactly who she is with kids. That teaches children how to take and become something in the healthcare field. So you can be taught how to be what you know.
Speaker 1:Do the job that Dr Samika posted. You could get taught to do the job that Dr Regina Beard does and so many other people do in this field to encourage our youth, because when our youth are encouraged, they can encourage their peers, their peers can encourage their peers, and so it grows forth. So I'm very thankful to you that you took that model of each one teach one, reach one and use it. And now we're showing others how to use it in your own special way, showing others how to use it to make sure that they're able to make a difference. Now I do want to ask you another question, and that's this Can you give us two stories of patients, one good story and one not so good story of a patient, a neurodivergent patient that you because of HIPAA I I'm not expected to say any names if you could just give us an example of, say, a good story and a bad story of one, a patient that was neurodivergent, that went to the doctor's office or emergency room, urgent care hospital to receive services?
Speaker 2:and so one of the most difficult things I would say is when families do go in for the assistance for, let's say, emergency care, because there were high magnitude challenging behaviors within a home setting, and they go in and they don't really get that assistance.
Speaker 2:A lot of the times when they do go in, doctors are either trying to medicate right away versus finding out why the problem is occurring for them, and then there's a lack of understanding, a lack of research and knowledge on some healthcare providers when it comes to understanding the experience not just of the learner but also of their family and the things that they are going through.
Speaker 2:A lot of the time, some of the medication that they give out let's say, one of the clients that I work with, the medication may only work with them for three or four weeks and then we're back at this big challenging behavior and then another situation I would say that will turn out for the better side. I had a client who did go in and get help from the doctor and that doctor was able to help them to sign up for what's called a the PONS list, and a medical waiver, and so basically what that is there's a wait list typically for, but that client put their name on that list and they were able to get approved, and so with that approval means that the government will help provide funding so that parents and that family can receive therapy services or they can receive respite care. And so those are two of the experience that I have had with two different clients.
Speaker 1:Thank you so much for that, and I do want to ask you a question, because you brought up something that we all need to know about. So, as far as the financial funding and we all know right now in this country we're going- through a cut across the board. Is that impacting the neurodivergent patients who can get medical waivers and they weren't previously given medical assistance?
Speaker 2:Yes, so there are different types of insurance. So there is the Medicaid, and so that's more of government. And then some people have private insurance. With private insurance also, there is typically deductibles that the families have to pay out, and so when deductibles go up, it makes it more difficult for the parents and the families to receive those necessary services. And then, when we think about the Medicaid, a lot of providers don't accept it. Providers don't accept it, and so it makes it difficult for families to be able to find a service provider within that area that they need that support in. And then there's also, due to everything that is happening within the government, a lot of people have not either received funding or there's a possibility of certain fundings being cut in the future. Understand, some states, depending on where you are, are doing what they can to ensure that services aren't cut, but it's important for everyone to know, based on where they are, what is happening within the insurance.
Speaker 1:Okay, and I thank you so much for that. So are are there support networks that are out that are not tied to the government, where patients can get help for the services that they need that might be cut from the government?
Speaker 2:Yes, there is a lot of different nonprofit organizations that are out there working toward providing different fundings to ensure that clients are still able to receive that services, either for free or for a low cost. I will say that for younger kids it is typically a lot easier for them to get services than in adulthood, and so when someone's an adult it becomes more difficult for them to get services because at a certain age most insurance companies I believe it's 23, don't want to provide certain services, and so under 23,. Some may do it under 21 years of age, but it becomes more difficult for an adult to get those services that they need.
Speaker 1:Thank you for that.
Speaker 1:And what I do want to add to what you just said is this that's an unfortunate and it's a really sad part of our society because, yes, our children are our future.
Speaker 1:Yes, we need to pour all the love and attention we can into our younger, into our young patients, but on the other lip side of that, which is why many helps does the work that we do, is because the children are only going to be as strong as the parents are.
Speaker 1:So if the parents are fighting, if the parents are not so much fighting each other, but if the parents are fighting because they need help and well, I don't know where I'm going to get this help from and their stress and anxiety level is sky high and through the roof because they got to take care of the kids, they got to take care of the house, they got other things they have to take care of. So often they don't have the time to take care of themselves, whereas if we look at it and we say, okay, well, you know, the adults are, you know, equally as important as the kids, because your kids are only going to. You know, I hear from teachers all the time, and I used to be teaching myself. I hear from teachers all the time that say that they're having problems with these kids, or this kid is this and this kid is that. And then when you actually roll back the film to see why it is they're having problems, it's because something is going on at home.
Speaker 2:Yes.
Speaker 1:That is causing that is rubbing off on the kids, or the children, and that's why the children are like that, because everybody's lost sight of the fact that the parents are just as important as the children they really are. They're that foundation, they're that base that allows the child to grow, that allows the child to think, that allows the child to see outside, just down the street, right, they can dream and they can, you know, think, because they actually have someone at home that can help them to do it. You know, and when we you know, and that's parents. But then we got a younger adult who you know, 18, you come off of Medicaid. So you're on your own right now, medicaid. You're on your own.
Speaker 1:But you're also beginning that stage and sometimes it happens, younger where you're having children. Well, guess what, if you don't start thinking about having children before you had them, you're gonna hit it with, hit with all that stuff in life that's going to literally take you out, and it's going to take you out because you wasn't told, you didn't know, and so funding is important for adults to receive, it's as important for the child to receive. So thank you so much for that. And then my last question go ahead, dr Samika.
Speaker 2:I want to just go back into what you were just saying. A lot of people have to understand that those children who needed help become adults who are also going to need help, and so that's why it's important to ensure that we still have that funding when someone turns into an adult.
Speaker 1:Yep, and you're so true, and I thank you so much for bringing that point out. My last question to you for the day is this tell us about the Dr Samika Cozy Project, which is called the Cozy Project. Tell us what people can get from the Cozy Project and what exactly it is that you do.
Speaker 2:So I started the Cozy Project in 2018. We originally just started as an organization for social change, and so at that time I worked in Naperville, schaumburg area in Naperville, schaumburg area, and then I had clients in Chicago. But I saw a difference. So I saw that some families in Naperville and Schaumburg they knew about like waivers and the ponds list, but a lot of my families in Chicago had no idea what that was, and those were the families that could utilize more of those resources and services. So we originally started as an organization just for social change.
Speaker 2:A couple of years later, we transformed our mission to providing services, resources and services for those who were neurodivergent, to help connect them with therapists and then to also connect them with the financial resources that they will need.
Speaker 2:And we also have a monthly meal program.
Speaker 2:So a lot of our families may not have the funding.
Speaker 2:So we go out and the last Saturday of every month we deliver a healthy meal to them, and then we also do community events. So this month we are doing where we're having people to nominate amazing mothers and we're bringing all of those mothers in and we're providing them with different essential items for themselves to ensure that they're still taking care of themselves as they're trying to take care of their families. We host a number of events throughout the year, especially in the summer we do a back to school and make sure that all of those that we serve have the supplies that they need necessary, and then we help parents do the IEP process. So the IEP process is typically a little difficult, especially for a new family and a new parent who had no idea what this process will look like. Because if they go in not knowing that they are also a part of that team and they have a say-so in what goes on in their child's education, it works out better, not just for them but also for the success and independence of that child.
Speaker 1:I thank you for that. I do have a final question before you go.
Speaker 1:And I do know that you say that. I just told you it was a final question. No, you're good, but you brought up another final question that I want to ask. So I know that the project is for those families that live in Chicago. Do you have a listing says lives in, let's say, minnesota and they're neurodivergent and they're having problems finding resources? Does your agency, also your organization, do they also have a list where they could do it? Someone could say, hey, here's some places that you can call that are on the list that will be able to help you or should be able to help you.
Speaker 2:Yes, and so we are physically providing services in the Chicagoland area, but I have worked with families as far as Indiana, minnesota, a few years ago, and so with that we'll still connect them with someone in their area, and that saves them from looking and trying to figure out who to go to or where to go, and so I will typically make all the calls and make sure that there's no long wait list, because that's another challenge that a lot of our families face. And then if there are supplies needed, like sensory needs for the family, on our end we are sure to get that order and send it to the family at no cost for them, just to make sure until those services are able to start, we have assisted them. There is another family that we've worked with in Springfield, to where we will meet with them biweekly to provide free services to them until they were able to find some a therapist near their location.
Speaker 1:So could you go ahead and give us your contact information so that we can actually put it in the chat. And I do want to say that you know, if you're outside of the Indiana area, if you're outside of, say, the Minnesota area or the Wisconsin area, if you're outside of those areas, don't give up. You could actually reach out to me and say, hey, sandra, I live in and I need help. Do you think Dr Samika and I will actually reach out to Dr Samika and say, hey, we have a family that, say, lives in New York and they're facing some challenges. Do you have any resources that we could actually turn to? So we don't want you to think that there's no help out here for you because charms is based in illinois, we're based in chicago, but we're a national organization because we realize that it's not just us in chicago that needs, it's all over the country If we have to. I don't want you bombarding the Cozy Project with your questions when you can send it to me and say, sandra, could you ask if they know somewhere or find something for you that can give you some assistance, because you brought up a really good point, dr Zameka.
Speaker 1:A lot of times these waiting lists, especially right now, with the cuts. These waiting lists are overwhelmingly burdensome and there are ways that we can get you certain items as well to actually assist you for a moment or two until you can get on your feet. I'm not saying gives you anything, because when people get stuff it's given to them, a lot of times they don't use it or a lot of times they feel like, okay, well, they're giving it to me, why should I keep going? No, this ain't about giving you anything. It's about assisting you to make sure that your patient experience is healthy. So could you give us your contact information, Dr Samika, so we can actually have it put in the chat for people please?
Speaker 2:Yes, and so our website is thecozyprojectcom. So T-H-E-C-O-S-E-Y-P-R-O-J-E-C-Tcom. Our phone number, where you can reach us at, is 224-409-8811. Or you can directly call me at 773-799-6546. On Facebook, you can find us at the Cozy Project. Just put that in and you should be able to find us. If you send a message to us, we'll typically respond within an hour or so us.
Speaker 1:If you send a message to us, we'll typically respond within an hour or so.
Speaker 2:Okay, so I'm going to ask you to do me a favor, and I want you to slow down and do it.
Speaker 1:Okay. Say your phone number. We have your Facebook, we have your website. Are you only on Facebook? Are you on LinkedIn or any other social media platform?
Speaker 2:Yes, so you can find me on Instagram and then also on LinkedIn. You will simply type in my name uh, Samika cozy S a M M I K. A last name C O S E Y.
Speaker 1:Okay, so we're gonna. Okay, so we actually have it, and then the last thing I want you to do is give us your phone, the organization's phone number for those that want to reach out, please.
Speaker 2:Yes, 224-409-8811.
Speaker 1:OK so let me see if that's been caught or if we need to. Okay, so she has it. So all of that information is in the notes. It's actually on the video. So if you need to go back and look at the video, I encourage you to do so. You can find a video and actually it's also on podcast. So it's on the podcast channels. It's on our YouTube channel, which is MediHelps, which is M-E-D-I hyphen H-E-L-P-Z Once again, M-E-D-I hyphen H-E-L-P-Z.
Speaker 1:If you are looking, if you have a patient experience story that you want to put out there, patient experience story that you want to put out there, please contact us at medihelpscom, which is wwwmedihelpcom, we are taking additional guests. However, those additional guests we're scheduling for now is between November and January, so if you're interested in coming on, you have a patient story that you want to share, whether you're a patient or whether you're a part of the patient's internal network, even if you're a provider that offers things for patients that we need to have, or a medical supplier that can actually have some information for patients to share, please do reach out. We would love to hear from you and, more importantly, I would love for the patients to hear from you so that they stop. You know, when they get a diagnosis and they get a prognosis, they stop thinking it's the end of the world, because it's not. Dr Samika said it herself.
Speaker 1:There was a point in time where she couldn't talk. Look at her now. She really couldn't talk. So it's amazing that what you know and I'm a very spiritual person this is amazing what miracles God can pull out of people, Right? So please, you know, reach out to us. We would love to hear from you. And at the end of this video session, I have to remind everyone being kind is free. It doesn't cost a penny, not one penny. When you're looking for free stuff, put being kind at the top of that list, because it doesn't cost anything and it means so much to so many people who are going through life, just you know, willy-nilly going through life not knowing what direction they should be going in. So we will talk to you next time. Our next podcast is scheduled for Monday and we will be talking about patient experience from the trauma point. So please do tune in and thanks so much for taking time to listen today. Thanks, Dr Samika. Thank you.