Transition Medicine Clinic and Care for IDD Patients | Transcript
[Intro melody into roundtable discussion.]
Juan Carlos: For our listeners out there that have noticed a change in quality of our audio. We do want to small disclaimer that we are recording this from a closet.
Apoorva: Yes. My closet.
Juan Carlos: hashtag covid times.
Juan Carlos: But the show must go on and we have a really awesome episode for you guys today. And uhh…
Apoorva: We hope you enjoy it!
Juan Carlos: Yeah, but before that we have a few things to talk about – And we are here, uhh, with the Baylor College of Medicine Resonance podcast with your host Juan Carlos Ramirez.
Apoorva: And I’m your other host, Apporva Thatavarty.
Juan Carlos: Cool! And today we are going to talk about transition medicine clinic and care for intellectual disability patients. Apoorva, take it away.
Apoorva: Laughs. Okay, so, uhh, today we are going to be talking to faculty member at Baylor Dr. John Berens and you know, we're going to be discussing taking care of patients with IDD or Intellectual and Developmental Disorders and the vulnerabilities that these patients face while navigating the medical system, but I thought Juan Carlos that you know, like before we got started maybe we would like to discuss some terms and terminologies.
Juan Carlos: Yeah! It's important especially if we're hearing this for the first time. Umm, it's definitely good to know so we can follow along.
Apoorva: Yeah, and just so that you know, we can we can know who exactly were talking about right? It's like what does it mean to be an individual that has an intellectual or developmental Disorder? So, I guess let's get started. Right? So, let's start off by defining what intellectual and developmental disorders are per the CDC. They Define it as – I'm just quoting them – developmental disabilities are defined as a group of conditions due to an impairment and physical learning language or behavioral areas. These conditions begin during the developmental period, may impact day-to-day function, and usually lasts throughout a person's lifetime. So essentially what that means is these diseases run a large gamut of disorders that are really grouped by system. So, you can have disorders that are you know, like little buckets that catch nervous system metabolic disorders, degenerative disorders, and so on and so forth. ..and you know, like essentially as the definition said these conditions are diagnosed, you know, as these patients are children and so and it typically persist throughout their life. So, to kind of dig in a little further, the I portion of IDD is intellectual disabilities. So basically, intellectual disabilities are, you know, a bucket among the developmental disabilities. So, if you imagine like a large umbrella being developmental disorders intellectual disabilities is something their count like falls under it. So, for example, let's think about Cerebral Palsy. Cerebral palsy is a developmental disorder, but it can manifest on a huge spectrum of symptoms and severity. That's basically because cerebral palsy is describing a phenotype or a presentation of a disease, not exactly what the disease is or the disorder is, rather. Some of the patients may present with muscle weakness tightness or problems with controlling their muscles and you know; these patients might need some special equipment to assist with mobility. On the other end of the spectrum you're going to have patients that are going to need lifelong care, including help with like, daily activities like using and maybe using a feeding tube. This developmental, you know this developmental disorder may or may not be associated with an intellectual disability or intellectual, umm, impairment. So that's essentially what I mean by, you know some a bucket with an under a larger umbrella.
Juan Carlos: Gotcha.
Apoorva: So, you know Juan Carlos when you think about the word intelligence or intellect, what do you think about?
Juan Carlos: Chuckles.
Apoorva: Okay, I know I put you right on the spot. So I'm gonna, I'm gonna answer that question for you, maybe. Do you have any answer for that question?
Juan Carlos: Oh, yeah. I just think of what everyone else kind of kind of makes you don't like book smart, uhh, is this person quote unquote smart.
Apoorva: Yeah! Yeah, so, you know like typically that is what we think of we think of IQ, right? We think of how a person is doing in school. Are they able to go to school but intellectual disability really kind of goes way beyond that it really what they really are kind of define is adaptive skills. So what do I mean about the mean by that basically and the ability of an individual to interpret social skills, or to be able to go to the grocery store or just to be able to communicate that “hey I'm feeling really angry today”, so just communicate one's feelings. So it goes way beyond what we would naturally characterize those intelligence. It's not just book smarts.
Juan Carlos: The organism as a whole.
Apoorva: Truly is. All right. So, you know IDD, basically, what I've been telling you until this point is that IDD captures a really large subset of disorders, which basically means the patients that are going to be having these disorders or super diverse they’re unique and they're wonderful in their own ways. So, you know, you're probably wondering Juan Carlos, you know, “Wow! Apoorva, you totally blew my mind today”, you know, like this definition, insane, never heard of it before am I right?
Juan Carlos: This is true.
Apoorva: Okay, so, you know little ol’ me back when I was you know of incoming ms1 really had no idea either, you know, and so prior to medical school. I had like this little teeny tiny experience working with patients with developmental disorders. But it was really when I came to Baylor College of Medicine and we went through the social determinants of Health curriculum that happens right during ms1 orientation. So, before we even start the curriculum for medical school, we learn about how our patients are impacted by health issues or health systemic problems that are not related to their health and it was during this, you know program that we had a seminar by Dr. Berens that truly enlightened me as to –
Juan Carlos: Ta-ta-da (melody).
Apoorva: --what you know, care for patients with IDD is truly like and just hearing him talk about that Summit, during that seminar kind of inspired me to pursue this topic for a podcast today.
Juan Carlos: Yeah, and it's just, I guess made me aware for sure that there are other challenges and especially when, during their critical periods of going from a child or an adolescent to adult and for us is really seen the dawn as challenging but I think of the therapist and transition positions would argue otherwise.
Apoorva: Yes, absolutely. Umm. So yeah, I mean, I really hope that you enjoyed this podcast today because we'll be digging a little deeper into what it means to be a physician that takes care of this vulnerable population and you know, what are some basic things that you know, as students, we can learn to implement so that our patients feel more comfortable with us in the future.
Juan Carlos: Yep!
Apoorva: So, enjoy!
Juan Carlos: And without further Ado. Thank you for that wonderful introduction. Uh, let's learn about transition IDD, its challenges, and talk to Dr. Berens. Let's go to the interview.
Apoorva: Let's get this started.
Juan Carlos: Cool.
[Interlude melody into interview.]
Apoorva: Hi. Dr. Berens. How are you doing today?
Dr. Berens: I'm good. How are you guys?
Apoorva: Doing okay. Doing okay.
Juan Carlos: Doing alright. Difficult podcast, uhh, covid times. We’re getting through it but, uh, we’re very happy to have you on. Welcome!
Dr. Berens: Really happy to be here. Thanks for having me guys.
Apoorva: Thanks for taking the time to be here. We’re so appreciative. Okay. So, to kind of get us started, we just wanted you to tell us a little bit about yourself to our listeners.
Dr. Berens: Perfect. So, my name is John Berens. I'm a physician here at Baylor. I actually grew up in Nebraska.
Dr. Berens: And then found my way down to Houston when I went to Rice for college and loved the city, stuck around, went to med school here – Baylor – and then I did my Med-Peds training – so, combination of Internal Medicine and Pediatrics. I did that over on the east coast in Philadelphia, but just missed Houston so much so found myself back down here. Took a job a couple years ago at the Transition Medicine Clinic, which I know we’ll talk a little bit more about here. Other than medicine: I like to cook. I like to do music, try to stay busy outside of work as much as possible.
Apoorva: Awesome! Well, you gave me a really great segue into our next question, which is actually, you know, you mentioned this transition clinic. Can you tell us a little bit more about it and how you kind of became involved in that? And, what exactly is your role is in that facility?
Dr. Berens: Right. Well, the transition medicine clinic I'll tell you a little bit about first. So, it was founded in 2005 or so by Dr. Cynthia Peacock and the initial idea behind it and its namesake was really to be a bridge for individuals who are transitioning out of the Pediatric world into the adult world. Uh, particularly those who had childhood onset conditions. Um. It was found out pretty quickly that that transition. There's really nowhere to go for a lot of individuals and so quickly the clinic pivoted to be more of a medical home. And that's what it is today. It's a medical home, it’s primary care, but the people we take care of at this point are pretty much exclusively adults who have intellectual and developmental disabilities, which I know you guys talked a bit about in your introduction. The question as to how I came to be here, um, in short, I guess I came at this whole group of people, um, in a very fun way. I spent four summers during college, and a little bit of time before that, working at a camp taking care of and just having fun with, in a recreational way, children with special needs and just really had a passion just being with and just caring for that population. And so, when I got to medical school, I heard a talk, actually by Dr. Peacock, about her job in this clinic and about Med-Peds, and how this all kind of ties together, and I knew instantly like that was what I wanted to do and here I am about 10 years later actually working in the clinic taking care of people now more in the clinical side, but really enjoying it. So my job here is mostly clinical but there is still plenty of time to do some projects on the side interact with students and there's a definitely a role of teaching, as we often have learners in our clinic, so it's a great place to be.
Apoorva: So, you mentioned this before, but you were throwing around this word ‘Med-Peds.’ For the listeners that don't necessarily know what that is, would you mind telling us a little bit about that?
Dr. Berens: Yeah, of course. Can never talk enough about Med-Peds. So, Internal Medicine Pediatrics combined residency training is a four-year training program. There's about 80 programs plus or minus around the country, as opposed to Pediatrics or Internal Medicine training if you did those individually, they're each three years. So you're kind of squishing it down almost double majoring in a way, into a four-year chunk. And then with that training you can do a whole host of things either on either side or a lot of times people will combine their skills. Even if they're caring for like in my case, I'm caring for only adults, but I'm really using a lot of the skills and knowledge that I gained on the Pediatric side.
Apoorva: Wonderful! Thank you for clarifying that.
Dr. Berens: Of course.
Apoorva: All right, so as developmental disorders or disorders that you know, Pediatric patients, they're diagnosed for children. What are some of the challenges patients face when transitioning to adult care? Because you mentioned the transition Clinic is really like a home for adult patients that have IDD.
Dr. Berens: There's a lot of challenges. I think first, even before we add the layer of the developmental disabilities. Just take a moment. Remember what it was like to be 18, 19, 20, maybe some of you are closer to those ages than me. But remember it's not an easy time. You're just starting to discover a lot more of your independence. You're trying to figure out what you want to do with your life. You're thinking about a lot of really big questions and a very kind of open road. So that's a tough period. When you add on all the extra layers that come with chronic illness that come with disability, there's a lot more considerations at play when we really think about just the medical side of the Healthcare System side of things. Think about it from all the different perspectives of the people involved. So, if you're a pediatrician you may have cared for this individual for their entire life 18, 20 years, and you're supposed to then say goodbye and trust that the doctors who are going to be receiving them will have the right know-how and somehow be able to do the same level of care and get to know the individual the same way. And then if you're in the internist side, you're saying “Oh my gosh, how am I supposed to review 18 years’ worth of records and get to know this family and this patient maybe with a condition that I don't have a whole lot of knowledge about” because you know up until a few decades ago the lot of these conditions, you know that we may be thinking about the life expectancy was is such that a lot of the individuals didn't survive into adulthood and that's changed a lot. So, there's a lot of barriers at play here from a lot of different angles. And of course, we're not even talking about the healthcare system at large, right? The healthcare system was not necessarily built with this issue in mind and for example, a lot of things change around this period that have nothing to do with health per se. So, insurance coverage changes, for example, a lot of the individuals. I see have Medicaid Insurance in the qualify for that based on their disability and then they re-qualify for adult Medicaid, but those two things are not equivalent. There are a lot of services and things that are covered in the Pediatric world that are not covered in the adult world. So then you have all these layers of all these changing losing Services all these things are happening all at once and it's a very difficult period so it's not a surprise when you start looking at the outcomes and really regardless of how you look at outcomes, if you look at just the experience for these individuals or their families, if you look at Health outcomes, for example, type 1 diabetes, you can look at like a an A1C as a marker of Disease Control or if you look at it just from Health Care spending for looking at dollars spent on care hospitalizations pretty much from every standpoint, the outcomes are not good when you're looking at this really vulnerable period. So, it's not a surprise that this is tough.
Apoorva: Yeah, wow. There are so many other considerations. I just remember when I was 16 and my mom said “Alright, time to go see an adult doctor” and I was like “But wait! My pediatrician!” So, I can only imagine just how much more challenging that is when navigating systemic insurance, you know, just going from Medicare to Medicaid transitioning through that. So, what are some resources that are perhaps present to help patients that are kind of navigating this and going through this vulnerable period themselves or patient’s families for that matter?
Dr. Berens: So, it depends on what level you're looking at, I think on a local level it's important to know what's happening, what options are available and here in Houston, I mean, our Clinic is one of those options, especially for individuals who have intellectual disability or who may have especially complex Health Care needs and require a lot of Specialists, Medical Technology, things like that. So, knowing about those clinics or specific doctors, who might specialize in this area, I think that's important in itself, but there aren't enough clinics like this across the country to address this need and I don't know if there ever will be because we require a lot of Med-Peds trained doctors really, all focusing on this. So, I think it's important regardless of what's available to know some resources that really everyone can use and incorporate into their practices. And this spans people who are pediatricians, adult doctors only as well as this area of medicine that span those so Med-Peds is one. Family Medicine is certainly another one. So this really affects a lot of healthcare professionals if you think about this issue. Now in terms of what resources might be available for the doctor out there or the doctor in training out there who doesn't know the first thing about health care transition or how to make it as good as we know how, a good place to start that I would recommend is gottransition.org and Got Transition is basically a repository of resources and in it, you can target it towards your audience if you’re a pediatrician or an individual who's transitioning, you're an internist, whatever. And the resources talk about the best-known approach that we have right now to Health Care transition, which isn’t perfect, I mean, this is a budding area of research. So, this isn't like there's a bunch of randomized controlled trials saying that this is the gold standard but with that being said, we’ve got to start somewhere and there is some evidence that these practices do seem to improve various outcomes.
Apoorva: Wonderful. I'm glad that they're, you know, like when I am in that future position there might be somewhere that I can go to, you know, appropriately take care of my patients in need. So, thank you for telling us.
Dr. Berens: Exactly, and I think it's good to know because it should empower all of us, you know, this isn't just the job of people who this is their entire world, right? It's not just my job. It's really all of our jobs because it's such a widespread universal issue that we all have to pay attention to it and know about it.
Apoorva: Absolutely. Okay. So, to kind of shift gears away from just medicine, in general, I guess my next question is, what are your thoughts on how our viewpoints towards individuals that have disabilities have changed in society over the past several decades? Do you think it has, first of all, like maybe that's a good place to start?
Dr. Berens: Chuckles. Yeah. I mean, I do think it has. First of all, I do want to add the disclaimer that I'm not a disability scholar and I'm not an individual with a disability so I don't want to you know, speak universally on their behalf or pretend to have really deep knowledge of this. But with that being said, I think that there's some general points that are important to know that you know, I've certainly come across on my own learning and on journey in this area. I think the first thing I don't know if this is necessarily change, but I think it's important to start off talking about language just because that's such an important part of our life and I think language carries so much power to it. The one thing that I can say at least that has changed in the last 10 years, is how we identify people with specifically intellectual disabilities. And that's the preferred term now and has been for some time but in 2011 Rosa’s Law was passed, and that made that official, at least on a federal level. So, federal documents, things like that, have that nomenclature intellectual disability. And part of this was stemmed from a really Grassroots efforts from individuals and families and friends who said, you know, that there's some older terminology that is stigmatizing and isn't fair and we don't want to use it anymore. So, if anyone's heard of ‘Spread the word to end the word,’ that's particularly that effort that really got a lot of this started. So, I think you know, that's one way things have definitely changed. Although this is an ongoing issue in terms of how do we label things in a way that's both accurate, but also humane and keeping the individual at heart of it? The other thing that has definitely changed over the last few decades is the setting in which a lot of people with disabilities reside and historically, people with disabilities really lived in institutions – state-sponsored institutions – at talking about the history of our country and that is definitely changed. There's been a big shift both in a legal standpoint as well as resources to really include people back into their community and that inclusion aspect of it that word ‘inclusion,’ I think it's really important to focus on because that's really been a big shift. And so, with that there's been a lot of changes to try to support individuals and families to help them thrive and be able to stay in their communities and preferably in their family homes.
Apoorva: Wonderful. It seems like we're making strides and you know, we're progressing in ways that are positive that are really positive. But what are some areas –
Dr. Berens: I would agree. I'm sorry. Go ahead.
Apoorva: Can you repeat that one more time?
Dr. Berens: Yeah, I was just going to say I agree. We've made some progress. There's definitely a long ways to go. I think that one of the things
Apoorva: That’s actually my next question –
Dr. Berens: Oh, perfect.
Apoorva: You know, we’ve been making all of these strides but where do you think we have room to grow and improve?
Dr. Berens: Well, I think, you know, a specifically addressing people in the medical field and medical trainees. I think almost the philosophy behind it in terms of the framework and how to think about disability is important because the most common framework that I certainly have encountered most of my training and I think is just a general sense out there is the Medical Model of disability, and that's not, I don't want to say it's inappropriate because we're doctors, or Healthcare professionals. And so, we tend to think of things in manner of their pathology and what can we do to fix things right? Like we go into the field to make people feel better and thrive and feel better and fix things. So, it's going to be second nature to some degree to come approach disabilities in a similar way in the sense that how can we make things better for the individual and I don't want to say that that's bad. We should always look to try to optimize function and people's lives as much as we can. But I think that there's a potential pitfall there because when we really focus on the disability and how to quote fix it, then we're basically saying that you need to be fixed as opposed to you’re okay just the way you are and I think the best example of this is, um, you know, think of someone in the deaf community so someone who is born deaf, a lot of those individuals don't see their deafness as a disability. It's just a part of who they are. And so, the idea of quote fixing that aspect of them doesn't make any sense. It's why would I you know, cochlear implant would be a way to quote fixed it but like, why would I do that? I'm fine. The way I was this is where I was born and I'm doing just fine. It doesn't make any sense to intervene on that. Um, and so, the Social Model of disability, which is very much on the other side of things is ask the question: What do we need to do to make our world a place where everyone can thrive and be included and instead of saying how can we fix you or fix your disability? How can we fix the world around you to make sure that your Incorporated in the same way that most of us can't be? And I think the power of that is that it really acknowledges the span of diversity that humanity truly has to offer because if our narrow definition of diversity only includes people who were quote able-bodied or people, um, you know, who don't have disabilities. I think that's a pretty narrow definition and if we include all people who may not walk or talk the same way or even think the same way is that maybe the majority of people, I think it allows us to be more accepting of those elements of diversity. And when we really are accepting of it, it pushes us to say we accept you. How can we include you how can we change things to include you? So, instead of saying we need to you know, get you a cochlear implant so you can hear, we say how can we make sure that you have access to you know, the same things on the TV that the rest of us do? A la closed caption or having a person who's signing in the corner of the TV like they do in some other countries.
Apoorva: Wow, okay. So, inclusion, diversity, giving a person a seat at the table. I love that. That's exactly what we need to move towards, and I think that's a great place to be moving towards.
Juan Carlos: And I think it's also (Clears throat) pretty amazing that that just by changing the language a little bit, it relieves this stigmatizing sort of viewpoint, right? A perspective from it as well.
Dr. Berens: Mhmm.
Juan Carlos: Just by changing it.
Dr. Berens: Definitely. Language carries a lot of power and I think it's important to be mindful of that. Not just specifically the term intellectual disability, but just how we phrase things and think about things in terms of these frameworks of disability.
Apoorva: Yeah, I think we’ve all fallen into the trap of the Medical Model and sometimes have forgotten about the patient and the lives that they live, and who they are as individuals. So, it’s good to put it back into perspective.
Dr. Berens: And we’re biased. I mean, when they're their sickest, when they have their most difficulties, we're not seeing people in general when they're out in their communities thriving living their lives, and doing things that we may not even dream they may be able to do and I think that's you know, that's part of the reason we have that shortcoming.
Apoorva: I agree. Welp, here’s to hoping that, you and I, Juan Carlos, do better when we see our next patient.
Juan Carlos: Yeah, absolutely. I mean, all it takes is being aware and putting into practice over time.
Dr. Berens: Definitely.
Juan Carlos: Spread that by example, you know, lead by example. We’re very fortunate to be receiving this information.
Apoorva: So on the receiving end, Dr. Berens, do you have any tips for us, you know, as medical providers, you know, future doctors, future nurses, future Pas, future, you know, therapist of individuals that, you know, patients that may have IDD? How should we approach that? What are some things that we should do? How do we make sure that they feel comfortable when interacting with us?
Dr. Berens: That's a really good question. And I think that's a good place to start. Even if you're listening to this and you saying to yourself “I don't know the first thing, I've never really had any experience with people with disabilities, like even if I want to be better or do something different like where do I start?” I think this is the way to start to at least know the first things to know when you walk into a room or a clinic or a hospital in you're going to take cre of someone with a disability a lot of –
Apoorva: Or even just at the grocery store –
Dr. Berens: Right! Right. even out in the world outside of the medical scenario the first thing and these are going to sound pretty obvious, but they're not always straightforward sometimes the first is when I first walk into a room I always address the individual first. It doesn't matter what their story is. It doesn't matter what their abilities are. Even if I know that fact and I don't always know so I always start by addressing the individual and so I walk in and I say “Hey Johnny its good to see you. How are you doing today?” Now if they can have some verbal communication they'll respond to me great. We'll start there even if they can let's say this is an individual who doesn't have verbal communication, you know, they may not respond to me and usually a parent or another caregiver will chime in and say “oh, you know Johnny doesn't talk” I think oh, that's okay Johnny's good to see you today. I'm going to ask you your who are you and then of course make sure I know who I'm talking to. I don't make any assumptions there. But then I ask and I say “well, how does Johnny communicate?” because everyone communicates people who don't talk, people who have a very profound intellectual disability. Everyone has a way to communicate. If you're in pain you cry, you may have facial gestures. You may point, you may blink, you may have an augmented communication device. So, there are some people who have no verbal abilities but they can communicate completely fluently using device, even like an iPad in today's world to communicate.
Apoorva: Oh, wow.
Dr. Berens: So, I don't, I don't know how someone communicates best. So, I ask the people around them and then a lot of times I'll find out ways that they communicate that I can do right there in the office. So, the first thing is just acknowledging that person as the star of the show and making sure you have all the information you need to be able to communicate them to their fullest extent. The second thing is I think I'm a little bit more cognizant of, you can't tell from the podcast, but I'm very tall and I don't like talking down to people on any day of the week, but I'm very much aware of that when I go into a room and if someone's in a wheelchair, I really or even if they're sitting on the table, I really make sure to try to get more on their level and instead of staring down at them. There's a certain power dynamic there and just if you think about it, if you're nervous to come to the doctors and this giant doctor comes in and is staring down at you right? It's a little daunting. So, I think those are maybe really to concrete things and just keeping in mind that a throughout the visit, right? Just because you introduce yourself to the patient doesn't mean you're off the hook really gears much of the encounter you can towards the patient, even if I know, say mom is going to be answering for the patient, I'm still going to be looking towards a patient. I may even word my questions as if I were asking the patient and everyone knows who's going to be answering it's not like there's some mystery there, but it just again, it acknowledges that they're the one that we’re here to talk about today. They're the one who's humanity matters in this scenario because they're the patient and I'm bound to try to care for them, not the people around them. So, I think that's just important to keep in mind both when you first walk in as well as through the whole time you're there.
Aporva: You know, that sounds so simple but yet so profound, you know? Like, talk to the patient and make sure you're communicating with the patient, and the patient is you know, whoever is in the room regardless of their communicability. So –
Dr. Berens: Exactly.
Juan Carlos: It sounds like you’re also employing, like, non-verbal cues and body language and simple gestures to diffuse any sort of discomfort and allow them to be comfortable and have a pleasant experience to share.
Dr. Berens: Yeah. That's that's a really good point Juan Carlos. I think you know, I didn't even really get into the physical exam part of things. But in this really should go for kind of all physical exams, but I think being more explicit about what you're about to do. You might take things a little bit more slowly than you might normally just being really open and clear about your intentions and what you're doing your communication on your side. I think can go, go a long way.
Apoorva: Wonderful. So, we live in pandemic times, so you knew this question was going to come up at some point but how has covid-19 impacted your ability to take care of your patients, you know, like what has changed of the many unexpected surprises?
Dr. Berens: Yeah. I mean, like you said it's unavoidable. There's going to be some kind of impact in pretty much every area of our Lives. I think the good side of things, start positive here, is been the surgence of Telehealth in a way that I think a lot of us were waiting for and have been waiting for to come into mainstream and particularly to be covered by you know, the most common in insurers. People weren't bound to that. I've been doing this for a while because this is a great technology. It's not new technology. The issue is never really been “do we have the pieces in place?” It's really been more “Can we get paid for our care? Because if we can't get paid for our care we can't operate right?” So, we need to find a way to provide care and get reimbursed for that care so we can continue having our doors open or lights on. So, when that changed at the onset of the pandemic, it allowed us as well as doctors across the country to practice care in a way that included Telehealth. So, telephone encounters or video encounters and particularly for our population, the people that we take care of that's been a game-changer: think about, if you know, we have some people who have autism and a severe anxiety or some behavioral issues and have trouble even coming into the office. Now they can have a visit from the comfort of their home or we have people who have a tracheostomy and they're on a ventilator around the clock. Imagine all the work that goes into loading the ventilator and the person on a stretcher into an ambulance just to come to a regular doctor's visit. That's a lot of work and it's not risk-free either. So, being able to still care for those patients in a meaningful way, it has been wonderful and certainly has been good for the families and you know, there's people looking at that experiential data and I think we'll hopefully see that pan out and adjunctive way but subjectively, anecdotally, it's been really great for a lot of people. Though, I guess not so silver lining here is that practicing medicine this way is, as you can imagine, a little bit trickier without being able to lay your hands on people, you know, get all the information you're used to having, we take for granted having at our disposal and making decisions, can definitely make practicing medicine a little bit more challenging at times and just requires some extra thought and you know, sometimes we have to be creative. Sometimes we still need to bring people in the clinic to make sure we're not that we're getting all the right pieces together. So, it's not what that is challenges, but I think, ultimately, we're all hoping that this will stick around in some capacity because I think it provides a really good option and a lot of scenarios that is really patient-centered.
Apoorva: Yeah, I can only imagine how much stress is alleviated from both patients and families to not have to perhaps come into the doctor's office and do everything that comes before hand to do that and I'm sure from the comfort of their home.
Dr. Berens: Hmm.
Apoorva: Wonderful so, you know with covid, social distancing. We've been spending a lot more times at home even with telemedicine going in at sometimes, so what have you been doing to maintain your sanity during these times, Dr. Berens‑?
Dr. Berens: Chuckles. It's a really good question. I've been putting a lot of my efforts into the kitchen.
Dr. Berens: I already like to cook and so I've focused a lot of my energies on just learning new skills doing some more cooking and the nice thing about that hobby is when you're done you get to enjoy it. Very tangible way as do the people around me. So I think that's been the biggest thing other than that just spending a lot more time with my family and you know, we're not the kind of family who's going out and doing road trips every weekend anyway, so maybe it wasn't as big of a change as it has been for some. Having a young one at home definitely limits the social outings, but it's been really nice just to spend some extra time just together with the family at home. So overall, can't complain. It's you know, we all miss the things that we miss but been staying busy.
Apoorva: Making the best of the circumstances. That sounds wonderful. So, to close out this podcast, you mentioned earlier that this podcast was a great way to get started, you know to learn about the disabled community and to learn about IDD. What are some other resources that our listeners can go to continue their education to become more well-informed and perhaps to get involved?
Dr. Berens: It's, that's a really great question. And I love ending this way because I think it's important to make the point that this issue matters to everyone even if you don't know someone personally who has an intellectual or developmental disability, even if and most people will fall into this bucket, aren't planning on going into a career in this area like myself. You will still encounter individuals in your life and certainly in the practice of medicine who have disabilities. So, it's universal in the way that you can't avoid it nor should you want to but if it's something you won't counter I feel like it should be on us to make sure we're prepared and make sure we know what to do when that moment comes. Unfortunately, as it stands, right now, this isn't something that's really well incorporated into education in the healthcare field, and I don't want to just single out medicine. It’s this way with dentistry. It's this way with kind of everything. It's just this forgotten topic, even though we all come across it at some point. And you know, credits at Baylor because they are starting to incorporate some of this into the curriculum. Certainly, the medical students will be familiar with the Partake curriculum and the disabilities case discussion that came with that. So that's you know, start of an effort to really incorporate this into the education that everyone will come across but with that being said, I think it's important for us to consider whether more experience would be helpful and I would argue that yes, it would be so how can you get more experience? Well, from a clinical standpoint, there are some electives including Life with IDD, which is a clinical elective put together by one of the doctors in our clinic and that's really great place to go. If you want some more firsthand hands-on knowledge that elective includes a lot of time in our clinic as well as some time out in some of those community centers Community Resources we've alluded to this talk. So, you get to see people more in their element in a way that I think we don't typically get to. The other big thing, that even people who are just starting their medical school experience can join in on, is a student group that's called the American Academy of Developmental Medicine and Dentistry or AADMD and that is a student group and expands just beyond medicine, there's dentistry and the PA school and we're looking to expand to other schools throughout the medical center. But this is a group that's really focused on a lot of the issues that we brought up today in terms of educating oneself in terms of advocacy, in terms of just medical knowledge of how to best care for individuals with disabilities of all kinds. So, it's a great organization. And of course, it's also a shameless plug because I'm the faculty liaison for the Baylor students here. So of course, I'm a little biased but I think it's a pretty great and there's a lot of great students who are involved with it. So stay tuned. There should be a talk coming up here in a couple of months. Actually, I think I'll be giving that talk as of now. So, if you want to hear me talk more about some of these topics, I will be there sometime in October.
Apoorva: Awesome. I've been to that talk. Hence why I know you. Hence, why you are at this interview. So, thank you so much for you know, telling us about all these different resources that we can continue our education with and you know, perhaps actually get to know the community bit more personally and interact with that.
Dr. Berens: Of course. And Apoorva, do they, do you guys include my contact info in the info for the show or should I…?
Apoorva: That's a Juan Carlos‑ –
Dr. Berens: Guess I can give an email now.
Juan Carlos: Uh, we could!
Apoorva: We’ll include it.
Dr. Berens: Perfect. Well, look for the show notes. If you want to contact me in terms of you know, just more questions or want to talk more about this these topics or if you want to get more involved with what we do here at our clinic. Please reach out. We are always looking to expand the circle of people who are thinking about these things.
Apoorva: Wonderful. Welp, Dr. Berens, thank you so much for your time. Thank you so much for introducing our audience to the world of development and taking care of patients with IDD and spreading a bit of inclusion and diversity into our community. So, thank you for your time.
Dr. Berens: Absolutely. It's been my pleasure. Thank you so much for being here. And for those of you still listening, thank you. Thank you for thinking about this.