Training Doctors in Neurodivergent Healthcare, with Dr. Craig Escudé | EDB 326

Dr. Craig Escudé discusses the importance of training doctors to care for the IDD and neurodivergent communities.

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine with over 20 years of clinical experience providing medical care for people with intellectual and developmental disabilities and complex medical conditions. He is the president of IntellectAbility, the mission of which is to “…provide tools and training to those who support people with vulnerabilities, helping them replace risk with health and wellness.”

Dr. Escudé’s pursuit of educating clinicians led him to create the Curriculum in IDD Healthcare, the first-of-its-kind eLearn course that teaches the fundamentals of IDD healthcare to physicians, nurses, medical students, and other clinicians. Through this course, his lectures, and his writings, he has taught thousands of clinicians and supporters throughout the United States and beyond. 

In addition to being regularly published in Exceptional Parent Magazine, he also co-authors “Unlocking Behaviors” article series in Helen: The Journal of Human Exceptionality which sheds light on how many so-called “adverse behaviors” in people with IDD are actually due to treatable medical, environmental or social causes. He also hosts the podcast “IDD Health Matters with Craig Escudé, MD,” where he speaks with a wide range of leaders, self-advocates, agency directors, clinicians, administrators, and others from across the globe involved in designing and facilitating service delivery to people with IDD.

For more about Dr. Escudé’s work: https://www.replacingrisk.com/ 

And look for IDD Health Matters Podcast, including on YouTube: https://www.youtube.com/@IDDHealthMatters/featured 

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Note: the following transcription was automatically generated. Some imperfections may exist.   

DR HACKIE REITMAN (HR): 

Welcome to Exploring Different Brains. I’m your host, Dr. Hackie Reitman, and today we have joining us, Dr. Craig Escudé who’s got a lot of stuff going on to help those of us with different brains. He’s the president of intellect, stability, and the host of IDD Health Matters podcast. Welcome, Craig.

DR CRAIG ESCUDÉ (CE): 

Thank you for having me. Hackie. I really appreciate the opportunity to be here.

HR: 

Well, I know you’re busy. And I know, it’s schedules are tough. Now tell us all about intellect ability.

CE: 

Sure. So intellect stability is a company that focuses on providing tools and training to help people who support people with intellectual and developmental disabilities, to be able to better identify health risks that are often missed, and to know what to do to mitigate those health risks, to try to improve health and health and health and wellness for people with intellectual and developmental disabilities.

HR: 

Well, that’s great, but I’m going to even take you back a step because as an MD, who trained in Boston University, we never learned anything about ID D, and it’s still not learning. So you have the practitioners who are first line of defense, and what are you doing to change all of that?

CE: 

So I’ll back up before I answer that question and tell you that I share the exact same story of really not receiving training to provide good health care for people with intellectual and developmental disabilities. And while we’ve made some progress, that’s still a problem today, most health professional training programs, including medical schools, nursing schools, and other health professions, really do not provide any, or at least not enough training, to help health practitioners to better be able to provide health care for people with IDD. So that is something that is is, you know, through my own challenges, in when I first started working in this field on my own recognition that I really didn’t have the best skills to be able to provide good health care. I developed a program to provide training and education specifically to health care providers in addition to all of the other services that that we offer through our company.

HR: 

And what is the name of that?

CE: 

So that’s a program called the curriculum in IDD healthcare. It is a web based curriculum that consists of six different modules, that, to me teach the fundamentals of providing good health care for people with intellectual and developmental disabilities.

HR: 

And how long a course is that.

CE: 

So the the runtime of the course is about four and a half hours and you can throw in another 2030 minutes because there are knowledge checks and questions after each of the modules. The course is approved for continuing medical education credits, and also for continuing education units for nurses. So you know, we keep track of the progress through the course and provide those those post tests at the end to ensure that people do complete the course to be able to qualify to get the credits.

HR: 

Does it give you a certification?

CE: 

So it gives you again, the continuing education Credits, but we also offer through our company what we call the recognized provider in IDD health care. So there’s a badge and a certificate that goes along with the completion, the successful completion of that course. And that’s really to help recognize that those providers are not only interested but have had some additional training in providing good health care for people with IDD. And they can use that badge for instance, on their website, or in other, you know, advertising material to indicate that they have an interest in providing good health care for people with IDD.

HR: 

So, in teaching medical professionals about IDD health care, what are some of the main points that need to be emphasized?

CE: 

Wow, there’s so many. So, I’ll start, I’ll start with, with one that I think is important. And one of the first things that anyone who works with people with IDD or provides health care or talks with people with IDD should do is is really presume competence, presume that the person you’re speaking with that you can have a conversation with them that they can provide information to you and speak to the person themselves. So many times, there might be someone who accompanies the person with intellectual and developmental disabilities to a health care visit. And we tend to speak straight to the the person who’s there with the person and never really even communicate with the person directly who were there who’s there to receive the health care. So we really need to ensure that we’re communicating with with people who are the patient, primarily, and other people can certainly chime in as help is needed. But we really should include the person with the with the intellectual disability in the conversation, to the best of their ability. Now, another one I’m going to add, which I think is also equally important in terms of clinical and diagnosis is there’s a concept called diagnostic overshadowing in this in that that we see in when we provide health care for people with IDD or serious mental illnesses. And that’s where we, we, as clinicians tend to maybe take some some symptoms that we see and attributed, attribute those symptoms to the overall diagnosis of the intellectual disability, rather than looking for a treatable underlying cause. And so a great example of this is where a person for instance, might start having some agitated behavior maybe that maybe the person can’t communicate with words so they can’t tell you what’s going on. But they start maybe hitting themselves in the face or or hitting other people or mealtimes they become very agitated and they spit out food. So what what often happens is the clinician see this type of behavior as well. This is just something that would that people with IDD do sometimes. And so we need to put them on a medication to stop that behavior without ever looking at an underlying treatable cause, such as maybe the person has a toothache, and they’re in pain, and they can’t communicate that to someone else. So the only way they can communicate it is by spitting out food because it hurts every time. They they try to chew or they become upset and they hit their their face or their mouth because it because they’re in pain. So another thing that I think is really important for clinicians to recognize is, is that concept and to be aware of it and to always look for underlying treatable causes, rather than attributing some symptom or or behavior to the overall diagnosis.

HR: 

Very well said and it’s something that any kind of clinician has to be aware of. Absolutely. So the IDD Health Matters podcast — tell us all about that.

CE: 

Sure. Um, so as you mentioned earlier, I’m the host of the podcast, and I kind of got roped into it wasn’t something I was seeking to do, for sure. But I, I was approached by a residential provider organization who provides residential services for people with with IDD. They’re based out of Ohio called Friends for life. And they, they we had a few conversations and they started a podcast with the mindset of helping people understand this field and helping people see that they can have a career in this field. And as a way to reach people where they’re getting information. And they wanted to add me on to provide a perspective on health and wellness for people with IDD. So at first I was quite resistant to be honest And I started doing little bitty segments that we call Medical Mondays. And they were about two or three minutes where I would just talk about a medical topic related to health care for people with IDD, and did that for about a year and a half. And they asked me at that point to up my game, and they wanted me to do a real real podcast. So I thought about it a good bit. And over the years of working in this field, now, at a national level, I’ve gotten to meet so many people in this field, from self advocates, to state their developmental disability directors, to leaders of organizations to CEOs of, of, of residential provider services, and really, so many nurses and physicians who work in this field, including yourself hacky, and they everybody has a story to tell. And I thought about it. And I’m like, What a great way to, to help people understand this field, to help people understand some of the challenges that we face, but also see some of the successes that have occurred over the years to where people can tell their story, and show again, that this is a great field to work in, and that there’s a lot of need for people to be a part of this field to improve health equity for people with IDD. So I started that podcast. About a year ago, we released our first episode July of 2023. And I’m happy to say that we actually have already received national recognition, we won the AI dd The American Association of intellectual and developmental disabilities 2024 Media Award for that podcast.

HR: 

Congratulations,

CE: 

Thank you.

HR: 

And educating healthcare providers about IDD, what have been some of the big challenges?

CE: 

I think the biggest challenge, but also the easiest one to overcome is to recognize that people communicate in many, many different ways. And one, and in what I mean by that is, in particular, in particular, in this field, when you’re working with people with intellectual and developmental disabilities, sometimes they don’t have the words to be able to express what’s going on, they may not be able to tell you, Oh, my stomach hurts, my stomach is hurting on Oh, I feel nauseated, which is why I don’t want to eat and why I’m losing weight. But they’re still going to communicate those things in different ways. Usually, it’s through some sort of change in behavior. And when we can help clinicians to recognize the different ways that people communicate, then we’re going to better be able to make better diagnoses and better treatment plans and prevent unnecessary suffering from from treatable conditions.

HR: 

What do you think really has to happen to get all medical professionals on board with this?

CE: 

Well, I think there has to be kind of more of a pull from the top than a push from the bottom. And what I mean by that is, I think one of the factors that one of the bigger factors that needs to occur is that we, the organizations who provide accreditation, to medical medical programs to help professional training programs need to start putting an emphasis that on the need for it health care for people with IDD to become part of training programs. When our board exams, for instance, licensure exams, should ask questions related to a person with an intellectual disability and some specific conditions related to those. So when we see, you know, the accrediting bodies, say requiring education in that field, and we know that they’re going to be asked questions on board exams, then I think that’s really going to help encourage or nudge health professional training programs to start teaching that information because they know it’s going to be part of their exams, and it’s going to be a requirement by licensure bodies.

HR: 

And one of the fellows has been a pioneer in helping make that happen. Is our friend who introduced you to us Dr. Rick Rader of the AADMD, of which you are a member. Tell us about your involvement and more about the AADMD as well as what the initial stand for.

CE: 

Sure, so AADMD stands for the American Academy of Developmental Medicine and Dentistry. And you can find out more information from them at a dmd.org But I’ll tell you a little little of the Basics. So an organization was started by Dr. Rader, our friend Rick and a few other few other people a number of years back, because of the, they recognize the importance and the need and the value of educating health care providers about about health care for people with IDD both, it was a group of medical professionals and dental professionals. And this organization has continued to move the agenda forward and as and has helped facilitate incorporation of, of training into medical schools and dental schools throughout the country as well as provided some some insight and some, some position statements, I guess, in some very important, some very important positions are very important. Topics such as whether or not people with IDD should be able to be eligible for organ transplants, so on and so forth. So it’s a great advocacy organization for physicians and dentists in particular, but certainly, any health professional can can gain insight. And I would highly encourage clinicians to look into this organization and become a member, it was very valuable to me when I found out about it about 11 years ago, because it was the first time I realized that there are other people who work in this field, and they’ve had similar experiences that I have, and I can learn from them. And in some instances, I’ve been able to to help train others as well to through as well to through the organization.

HR: 

Now, what advice would you have for somebody who is themselves neurodivergent, or the parent of a neurodivergent individual, who wants to find a doctor that understands IDD? How do you find them?

CE: 

Well, if they took the curriculum and add health care, look for the badge, but but we still got a long way to go on that I think, you know, talking with others, and asking them, where do they receive their healthcare and where have they had good experiences, is one way to do it, you know, use it using using our colleagues, the resources that we have people that have been in similar situations, is one one way to find people. But the other thing you can do is really, you know, take time to interview someone, or build a relationship with a clinician outside of a crisis moment. So maybe make an appointment with with a clinician, where you can go in as an introduction and say, Hey, I’m such and such, and I have, you know, these particular conditions, or if you’re a family member, say, Hey, here’s my, my loved one. And I want to, to get to know them, and we want to get to know you to see if we can facilitate a really good, healthy, you know, health care relationship. And that can go a long way. Because what some of the, you know, rightfully so many times people with with IDD or their supporters are really frustrated about the the maybe less than optimal health care visits that they have. And I’m using nice words here, because I’ve heard many stories of of really appalling situations where we’re where people were, you know, had had some big problems trying to access health care. But when we’re in a crisis situation, all of our emotions are up. So I think, you know, finding a clinician and trying to build that relationship outside of a serious health care need would go a long way to helping, you know, helping find a good match between health care provider and a person with with some sort of neurodivergent condition.

HR: 

And so a corollary to that would be in the interest of getting more doctors who know about this stuff. What’s preventing that kind of information from being taught in all medical schools?

CE: 

Well, that’s a that’s another great question. Hackie. I will say that the first thing that needs to happen for someone to have a change in curriculum is they need to see that there’s an actual need to teach people about it. And that is something that even I wasn’t aware of. I didn’t realize that there was more information I needed to know to be able to provide good health care for people with IDD. When I got off my when I got out of my medical school and residency training program. I figured I I was taught what I needed to be taught. So why do I need to learn more? It wasn’t until I began working in this field that I realized very quickly wow, I need to learn a lot more about this field and I started seeking out opportunities to find information and back In the 90s, when I was when I was just getting involved in this field, there wasn’t very much information out there to learn it as a health care provider. So I didn’t recognize that I had the need to learn this information. And unfortunately, I think a lot of health professional programs still don’t think they have they have that there’s a need to spend valuable time during a student’s, you know, learning training to teach this information. Now, the other side of that is, you’ve got the curriculum, you know, curricula are very packed. And there’s a lot of information that has to be taught to medical schools and to medical students, and nursing students and others. So there’s an issue of finding time, where do we fit this into the curriculum? How do we add more to the curriculum? The third challenge, I think, is who’s going to teach this information. You’ve got to have clinicians who have enough experience and expertise in this field, to be able to teach others about it. And unfortunately, we don’t have enough of those. There aren’t enough of there aren’t enough clinicians who understand this field well enough. If you know, for instance, if right now, every medical school in the country and every nursing school in the country wanted to hire a faculty expert on Intellectual and Developmental Disability health care, they couldn’t find them because there’s just not enough clinicians to go around. And that’s actually one of the reasons I created that online course. Because it’s a way to get information into health professional programs and to practicing clinicians, without having to say hire an expert to be able to do that.

HR: 

How can our audience learn more about you?

CE: 

Well, a few ways. I guess. First, if you look up IDD health matters on any podcast platform that that you like to listen to, you should be able to find it. And you’ll see lots of episodes and can learn more about some What about me, but also a lot more about the field. If you wanted to learn more information about our company and what we do. Our company’s name is intellect ability. And the website is replacing risk.com. So replacing risk one word.com. And on that website, you’ll see all of the tools that we offer. We have the health risk screening tool, which is a web based tool that is used to screen for health risks and people with IDD. It’s currently used in about 26 different states. And it’s used to screen over 100,000 people who receive supports and services who have intellectual and developmental disabilities. We also have an array of elearning courses that are available, not just the one I mentioned. But also we have courses on the fatal five which are the top preventable causes of illness and death, choking prevention and many other courses that people can take or use in their in their programs to learn more about IDD health care. And we also do Person Centered thinking training services as well. So again, just jump on replacing risk.com. And you can learn a lot more about us.

HR: 

Is there anything you’d like to cover, Craig, that we haven’t covered?

CE: 

Um, you know, I think I think one of the primary things that we have to think about is we’ve got to think of people with any condition as a person first. Sometimes we we think about people by their diagnosis, and we say, Oh, that’s a person with disabilities. And then we have, we have preconceived notions, well, they can’t understand anything, well, they’re not going to benefit from health care. Well, they don’t really have the same quality of life as other people. And those are, you know, preconceived notions that we that we have that hinder our ability to provide good health care and good supports for people with IDD. So if we see the person as a person first, with the same desires, the same interests, the same likes, and sent the same goals that they have for their lives and wanting to live a good life and wanting to live a healthy life. If we see them as people first just like everybody else, then we’re going to be much more likely to invest our time and energy into getting accurate diagnoses, providing treatment plans that are effective, and in really improving the lives of people that we all support.

HR: 

Amen. That would solve a lot of problems in this world if we could just get people to look at each other as human beings and as Martin Luther King said, judge me by the content of my character, not the color of my skin. And in this case, not by my IDD.

CE: 

Right now by my abilities or differences. Couldn’t agree more.

HR: 

If we were to pick one thing, Craig, that you wish every medical provider understood about patients with intellectual issues. What would that be?

CE: 

Well, I touched on a couple already. So I’ll leave those. One is to see people as people first the other is to is the concept of diagnostic overshadowing. So I think those those two are important. But the to add to that, I would say that there are many, many people who do not use words to communicate, that suffer needlessly, from treatable or preventable conditions. And as clinicians, it’s our job to know how to recognize signs of those conditions, and to know how to treat those conditions appropriately. And to, again, provide good health care to all of our patients to everyone. And it does take a little bit of a different lens, it takes a little bit of training, there’s a little bit different approach, that that can enhance our abilities as clinicians to be able to recognize these early signs of preventable or treatable causes that are so often missed. So the one thing I would say is, seek out additional training, whether it’s online training, whether you can work through your health professional programs, through your through your medical schools, or nursing schools to implement some sort of training, seek additional training in work to help all people to be able to receive the same level of health care whether they have a disability or not.

HR: 

Very well said Craig. And on that note, I want to thank you for giving us so much information and for doing all the great work that you do for those of us whose brains are a little bit different and have various disabilities and want to encourage you to keep up the great work that you do for so many and please keep in touch with us here at Different Brains.

CE: 

Thank you so much, Hackie. It’s an honor to know you and honor to be on your program and thank you for the incredible work that you do as well.