Advancing Equitable Care: Educating Healthcare Professionals on Intellectual and Developmental Disabilities

Podcast Transcript

Dr. James K. Stoller:

Hello, and welcome to MedEd Thread, a Cleveland Clinic education podcast that explores the latest innovations in medical education and amplifies the tremendous work of our educators across the enterprise.

Dr. Tony Tizzano:

Hello, welcome to today's episode of MedEd Thread, an education podcast exploring how we are educating healthcare professionals to better serve patients with intellectual and developmental disabilities. I'm your host, Dr. Tony Tizzano, director of Student Learner Health here at Cleveland Clinic and Cleveland, Ohio. Today, I am very pleased to have Dr. Carl Tyler, director of geriatrics education and research in Cleveland Clinic's Family Medicine Residency program here to join us. Carl, welcome to the podcast.

Dr. Carl Tyler:

Thank you. And thank you for the invitation. Always happy to speak about, uh, intellectual and developmental disabilities and MedEd.

Dr. Tony Tizzano:

Well, I've been looking forward to this. So, Carl, to get us started, could you please tell us a little bit about yourself, your educational background, what brought you to Cleveland and your role here at Cleveland Clinic?

Dr. Carl Tyler:

Sure. Well, I'm a native Clevelander. I grew up in Lyndhurst on the east side of the city. Went to Brush High School, entered what was then a new BSMD program by NEOMED, called NEOUCOM at the time, and did my undergrad at Kent State University and then my medical degree through NEOMED. Then I did a year of psychiatry postgraduate training at the University of California, Irvine. Then three years of family medicine training back here in Cleveland at a community hospital, Fairview Hospital under the case Western Reserve University Department of Family Medicine.

I then did 10 years of private practice in a semi-rural small group practice in Starr County, next to corn fields and with Amish buggies driving by, and started to get interested in people with developmental disabilities, and that changed the whole trajectory of my career.

Dr. Tony Tizzano:

Wow. It sounds like you've had a wonderfully diverse background that you bring to the table. So in today's segment, we'll explore new ways to educate healthcare professionals about intellectual and developmental disabilities to better address health disparities and prejudices in these populations. So Carl, can you help us frame today's topic by providing our listeners with some context and sense of the growing awareness around health disparities in persons with these sorts of disabilities and the importance of educating medical students and residents on how to best care for this population of patients?

Dr. Carl Tyler:

So just for clarity's sake, the population we're talking about are individuals with intellectual and other developmental disabilities, and that includes people with autism, people with chromosomal conditions like down syndrome, with genetic conditions like Fragile X and environmentally determine conditions like fetal alcohol syndrome. And so, these are people who have disabilities present during the developmental period, which by federal statute is up to age 22.

And for many decades, people with intellectual and other developmental disabilities, we'll call that group just IDD, use the acronym IDD. People with IDD were segregated in large institutions, often in rural areas, which is how I came to know about the population. And so, health professionals, in general, had very little contact with people with developmental disabilities.

And it was only until people in state institutions started to transition to the community as kind of part of the Civil Rights Movement in the '60s and '70s, '80s, that clinicians were faced with providing healthcare for people with IDD, and I, like many people in healthcare at that time, were ill prepared to provide that healthcare.

Dr. Tony Tizzano:

Yeah, you know, I find that fascinating because it's been my experience that this is somewhat of a neglected area. So I'm impressed that something sparked your interest in working with these individuals with IDD early on and subsequently you've even pursued more scholarly work. What was the personal journey behind that that put this in front of you and said, "This is something I'm gonna do?"

Dr. Carl Tyler:

So I met a gentleman who was a multi-state regional director for group homes, and his name was Neil Brandemoyne. And I met him on a plane. I was taking a trip to the Boundary Waters of Northern Minnesota to do a wilderness canoe trip, and he saw me reading a medical book, nerd that I am. And he and I started talking, and he was trying to find physicians who were willing to take on the responsibility of caring for people with IDD who were coming out of state institutions to the community.

And despite all my education and training, I had to say, sadly, at the time that I really knew, despite a year of psychiatry and three years in family medicine residencies, I had to say I really had never been trained about providing care, but I would do my best. And over the subsequent 10 years, I tried to learn as much as I could from families, from people with IDD themselves, from direct support professionals, the people who provide direct care from nurses in the developmental disabilities field, from psychologists, from people who provided services to that group. And I was constantly looking at the medical literature and finding that very little was being written about how to provide healthcare for that population. 

And after about a decade of frustratingly finding still little written about that population, I decided, well, one thing I could do was contribute to that literature. So I sold my practice and did two fellowships at Case Western Reserve. One was an academic fellowship in family medicine that focused on aging and disability. And my mentor there was Dr. Steve Zazanski. And then I did subsequently a three-year fellowship again at Case in practice-based research design and methodology. My mentors were Dr. Jim Werner and Dr. Kurt Stange.

And so those fellowships helped train me to become a clinician scientist and contribute to the literature about clinical care in this population. I then took a full-time teaching position in the family medicine residency, initially at Fairview Hospital, then subsequently under Cleveland Clinic and having earned credentials in geriatric medicine, I've been teaching geriatric medicine. I also help the residents and fellow faculty with their research, and I teach them all about caring for people with IDD.

Dr. Tony Tizzano:

Well, that's fabulous. And I'm sure it's not lost on our listeners that you epitomize the idea of a lifelong learner. What is the role of the American Academy of Developmental Medicine and Dentistry in your work and and in educating learners?

Dr. Carl Tyler:

Well, AADMD is a fantastic organization, and I encourage everyone listening to this podcast to look up aadmd.org. They were the first group that I found when I got into this field of like-minded clinicians who were dedicated to improving the health and healthcare of this population. And what was very neat about this organization is that from the very start, it was a union of physicians and dentists. And there's hardly a time (laughs) or a circumstance where doctors and dentists collaborate together, sadly. But in this population, the oral health of people with IDD is so poor, and it has such a huge impact on the overall health of this population that very early on it was very clear that dentists and doctors needed to work together to improve healthcare for people with IDD. So that's, you know, a very neat aspect of this group.

They, through grant funding, through the Centers for Disease Control, also through Special Olympics, and other funders have developed a curricula for medical schools and for dental schools to enable faculty to teach their respective professional students about IDD. So please check out aadmd.org, and if you're passionate about healthcare in this population, please join AADMD.

Dr. Tony Tizzano:

Yeah, you're right. We don't collaborate enough in, in many areas. And you're right, dentists and doctors, you don't often see them together, but it really speaks to how a multidisciplinary approach is important on so many levels and in so many different populations. So in consideration of all your efforts and those of others, do you feel that we're beginning to move the needle towards more equitable care for persons with IDD?

Dr. Carl Tyler:

I believe we are. And I'm always amazed from the directions where it's coming. So, for example, EPIC, the electronic health record that we use here at Cleveland Clinic recently added this functionality for clinicians who are providing care for people with rare diseases. And I was just entering information about one of my patients with a genetic condition called Cornelia de Lange syndrome. And here what pops up is this functionality that allows me to contact other clinicians throughout the United States, also connected to EPIC, who have experience with this population.

And so, you know, you just never know where innovation is gonna come from. One thing I'd like to tout, because Cleveland Clinic has been very supportive of my work, is that we have on our e-learning platform for all caregivers at the clinic, a module about caring for adults with IDD. And there are, you know, many specialists in neurology, in pathology, in many specialties at the clinic who have an interest in this population are doing their work. In our family medicine residency, people with IDD are one of our focus populations.

And so we spend a lot of time and effort in creating curricula and building educational infrastructure that provides experience for family medicine residents to take care of people with IDD in their patient panels under supervision, and to become comfortable and familiar with the kinds of conditions that they'll be seeing in this population so that when they go out into practice, they'll provide good evidence-based care.

Dr. Tony Tizzano:

You know, it's not surprising to see an organization like the clinic really put its shoulder into work like this. It seems that all we need to do is identify a need and all of a sudden, there is a group aimed in that direction and gaining some ground. But what about persons who are outside of a larger academic institution who are in a small community hospital or in a community practice, you know, where did they get a foundation for taking care of these folks?

Dr. Carl Tyler:

The first idea that comes to mind is clinicians need to listen to their patients with IDD and their families and their caregivers. These are the people who taught me about IDD and directed me to resources. And so many families and caregivers, many people with IDD who are self-advocates know where to find information. They learn from their respective advocacy organizations, whether it's, you know, a down Syndrome advocacy organization or Cerebral Palsy advocacy organization, whatever the condition is, they learn about healthcare needs, they learn about how to tailor preventive healthcare.

And these organizations are providing resources that then people with IDD and their families and their caregivers take to the physician to prompt clinical action. So I think the first thing is be humble and ask your patients and their caregivers what they know, and be willing to listen. The second thing is now with the internet, you can find information about even rare conditions easily.

Thirdly, now that we have advances in molecular genetics so that we can clearly identify people who share the same genetic etiology for their condition, we can accrue information relatively rapidly about what healthcare conditions a person is prone to, how their preventive healthcare and screening schedules need to be modified for that etiologic diagnosis. And so, these organizations provide a lot of information that are directed to the health professional, to the physician or other health professional. So information is power, and we're in an information age.

And speaking of, you know, AI for that matter, so this is an area when we're talking about often conditions that are rare where artificial intelligence can help us sort through a ton of data to come to clinical answers.

Dr. Tony Tizzano:

Well, you said a whole bunch of keywords there. I must say, the one that really resonated right off the bat was humble. You know, so often I hear students say, "Boy, I've got my white coat on. I'm seeing a patient, I'm in the be in my clerkship years, and I need to present myself in a competent manner." And, you know, not knowing is not a sign of weakness. Not working to find out is a sign of weakness. (laughs) 

So, so often if we just listen to the patient and if we can't listen to them, as you point out, listen to the caregivers that they have because they have walked a mile in their shoes and they can bring a lot to the table. The other that you mentioned is the use of the internet. And today I just found myself with a patient who had me on thin ice in an area I didn't know. I simply pulled out my phone and started to look and together, you know, we sorted things out.

And there was a time I think I would've been embarrassed to do that, but I'm not anymore. My junior more partners have taught me that, that not to be embarrassed with that, and I think we all benefit. Kudos to you. Well, you've given us an awful lot to consider. And as you look at the horizon in this area, you know, and we look at the legal precedents that are set, are we beginning to see a reduction in the kind of barriers and policies, regulations that exclude persons with IDD?

Dr. Carl Tyler:

Well, I think the future is yet to be determined. And, you know, a lot of health in people with IDD is dependent upon the support and service system. And those systems are fragile, and those systems, to a great extent, are often funded very differently state by state, and developmental disabilities support and service systems are often ones that get more funding during good times and get less funding during, you know, tough times.

And so, we need more stable infrastructure that doesn't fluctuate. I think we also need to recognize and support and have consistent funding for things that we take for granted in healthcare sometimes, like transportation. So you can have the best healthcare in the world, but if you can't, you know, get to the doors of the building, you're not gonna be able to benefit from it. You also need often to have support persons who implement the healthcare plan.

And again, that requires additional streams of support and funding. And right now, for a lot of people with IDD, you may even have the dedicated funding through the state, through what are called waiver programs, but you can't find a caregiver who is willing to accept the pay that you can provide them to provide that direct support. So I think the future is still to be determined. And one thing I do find in this field, interestingly is, and I think this is the case for medicine as a whole, is patients often suffer from extremes on either end.

And what I mean to say is, for example, with diagnostic testing, sometimes people with IDD are subjected to too many diagnostic tests without good clinical indication, too many MRIs of the brain without clear indication. And then sometimes people with IDD don't receive enough diagnostic testing. So we need, as in all of medicine, to choose wisely as that program is called. It applies to people with IDD.

We need better integration of healthcare services. And I was just dealing with this yesterday, a patient of mine who was not eating, and I think the most likely cause was they had horrific dental caries, and I think the caries were causing so much pain. And his mother was telling me that there's a two-year wait to get into a dental clinic, and he's rapidly losing weight. And the same thing with mental health. We are very fortunate here at the clinic, we have psychiatrists like Dr. Rachel Ferrari, I'll just call her out by name, who is a psychiatrist who's dedicated to improving the mental health care of people with IDD.

She comes to our family medicine residency program once a month to provide teaching and to provide service. And we're very fortunate, but many people with IDD have poor health because they have poor mental health, because they have no access to psychiatrists who are trained and experienced and interested in providing service. So we have a lot of work to do. We have a lot of training and education to do. But Cleveland Clinic is doing a lot of great things in this area of developmental disabilities medicine, and I think they can serve as a model.

Dr. Tony Tizzano:

I think it's one of those examples where size matters, that the diversity that we have in the terms of the kinds of professionals we can bring to bear on problems is sometimes awe-inspiring. Well, certainly, I hope we've created some awareness and a better understanding because if we don't start there, then the impetus for wanting to learn tends to flounder.

So if we turn just for a moment and consider education for individuals with IDD throughout the entire spectrum, primary and secondary, you know, it used to be that we saw children when I was in elementary school, were in separate classes. Is there not a movement to put everyone in a more mainstreamed environment because that's where they're going to ultimately have to live?

Dr. Carl Tyler:

I believe there is, and you're seeing integration to a great extent where possible and where I'm not a developmental behavioral pediatrician, and my focus is primarily on adults and elders with IDD. So I don't have a good pulse on education and kind of the latest trends, I'm more hearing about what people's educational history was. Although adults with IDD are now going to college some and going to different types of post-high school educational programs, I can speak to that.

And I know a lot of my patients with IDD are involved with employment in the community. So instead of segregated employment, more and more you'll see people with IDD working in the community, sometimes in competitive venues and sometimes supported, but I think you're right, we need to start at the beginning, which is while actually looking at prevention of developmental disabilities through addressing factors that are involved with things like preterm labor and delivery, and things like prenatal alcohol exposure. And then look at things like, you know, early diagnosis of autism, look at things like what is evidence-based education for people with specific intellectual disabilities and educational disabilities, learning disabilities.

So I think we do need a lifespan approach when we're talking about quality of life and healthcare in this population.

Dr. Tony Tizzano:

Yeah, a lifespan approach. I certainly can appreciate that. Well, Carl, is there anything that I didn't ask that you feel is important for our listeners to know?

Dr. Carl Tyler:

One thing I would just end with is it is so rewarding to work with people with IDD. A clinician's careful assessment and treatment can make such a huge impact in the quality of life for individuals in this population, that this is a very, very rewarding area for physicians and other health professionals to get involved with. So I really encourage you to send that message to our listeners because these are people who often have not had the benefit of careful attention.

They often have not the best healthcare. And so, when you have a clinician who is willing to do their best, willing to acknowledge their ignorance, willing to learn what they don't know and listen to others who do know, you can make a huge difference in a person's life. So encourage people to get involved, get involved with Special Olympics, that's a very fun way to get involved with people with IDD. You know, support community employment, support people with IDD who are working the community, and together we can make a difference.

Dr. Tony Tizzano:

Yeah. Well, your kindness and your enthusiasm for this is contagious, and I think you personify what most of us should probably look towards doing. So Carl, I'd like to thank you so much. To our listeners, if you'd like to suggest a medical education topic to us or comment on an episode, please email us at education@ccf.org. Thank you very much for joining, and we look forward to seeing you on our next podcast. Have a wonderful day.

Dr. James K. Stoller:

This concludes this episode of MedEd Thread, a Cleveland Clinic Education podcast. Be sure to subscribe to hear new episodes via iTunes, Google Play, Stitcher, Spotify, or wherever you get your podcasts. Until next time, thanks for listening to MedEd Thread, and please join us again soon.