Intellectual and Developmental Disabilities and Psychiatric Comorbidities

Podcast Transcript

Neuro Pathways Podcast Series

Release Date: April 1, 2025
Expiration Date: March 31, 2026

Estimated Time of Completion: 30 minutes

Intellectual and Developmental Disabilities and Psychiatric Comorbidities
Rachael Ferrari, MD

Description
Each podcast in the Neurological Institute series provides a brief, review of management strategies related to the topic.

Learning Objectives

• Review up to date and clinically pertinent topics related to neurological disease
• Discuss advances in the field of neurological diseases
• Describe options for the treatment and care of various neurological disease

Target Audience
Physicians and Advanced Practice providers in Family Practice, Internal Medicine & Subspecialties, Neurology, Nursing, Pediatrics, Psychology/Psychiatry, Radiology as well as Professors, Researchers, and Students.

ACCREDITATION

In support of improving patient care, Cleveland Clinic Center for Continuing Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

CREDIT DESIGNATION

• American Medical Association (AMA)
  Cleveland Clinic Center for Continuing Education designates this enduring material for a maximum of 0.50 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
  
  Participants claiming CME credit from this activity may submit the credit hours to the American Osteopathic Association for Category 2 credit.

• American Nurses Credentialing Center (ANCC)
  Cleveland Clinic Center for Continuing Education designates this enduring material for a maximum of 0.50 ANCC contact hours.

• Certificate of Participation
  A certificate of participation will be provided to other health care professionals for requesting credits in accordance with their professional boards and/or associations.

• American Board of Surgery (ABS)
  Successful completion of this CME activity enables the learner to earn credit toward the CME requirements of the American Board of Surgery’s Continuous Certification program. It is the CME activity provider's responsibility to submit learner completion information to ACCME for the purpose of granting ABS credit.

Credit will be reported within 30 days of claiming credit.

Podcast Series Director
Andreas Alexopoulos, MD, MPH
Epilepsy Center

Additional Planner/Reviewer
Cindy Willis, DNP

Faculty
Rachael Ferrari, MD
Center for Adult Behavioral Health

Host
Glen Stevens, DO, PhD
Cleveland Clinic Brain Tumor and Neuro-Oncology Center

Agenda

Intellectual and Developmental Disabilities and Psychiatric Comorbidities
Rachael Ferrari, MD

Disclosures

In accordance with the Standards for Integrity and Independence issued by the Accreditation Council for Continuing Medical Education (ACCME), The Cleveland Clinic Center for Continuing Education mitigates all relevant conflicts of interest to ensure CME activities are free of commercial bias.

The following faculty have indicated that they may have a relationship, which in the context of their presentation(s), could be perceived as a potential conflict of interest:

All other individuals have indicated no relationship which, in the context of their involvement, could be perceived as a potential conflict of interest.

CME Disclaimer

The information in this educational activity is provided for general medical education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient's medical condition. The viewpoints expressed in this CME activity are those of the authors/faculty. They do not represent an endorsement by The Cleveland Clinic Foundation. In no event will The Cleveland Clinic Foundation be liable for any decision made or action taken in reliance upon the information provided through this CME activity.

HOW TO OBTAIN AMA PRA Category 1 Credits™, ANCC Contact Hours, OR CERTIFICATE OF PARTICIPATION:

Go to: Neuro Pathways Podcast April 1, 2025 to log into myCME and begin the activity evaluation and print your certificate If you need assistance, contact the CME office at myCME@ccf.org

Copyright © 2025 The Cleveland Clinic Foundation. All Rights Reserved.

Introduction: Neuro Pathways, a Cleveland Clinic podcast exploring the latest research, discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab and psychiatry.

Glen Stevens, DO, PhD: Intellectual and developmental disabilities, known as IDDs, present with a varying level of intellectual disability from mild to severe and include autism spectrum disorder. They persist from childhood through adulthood, often presenting unique challenges. But what many people may not realize is that these disabilities frequently co-exist with mental health conditions, which can significantly impact diagnosis, treatment and quality of life.

In today's episode of Neuro Pathways, we're addressing the mental health challenges facing patients with intellectual and developmental disabilities and provide listeners with tools to better serve and support these individuals. I'm your host, Glen Stevens, neurologist, neuro-oncologist in Cleveland Clinic's Neurological Institute. And I am pleased to be joined by Dr. Rachael Ferrari.

Dr. Ferrari is a psychiatrist in the Department of Psychiatry and Psychology in Cleveland Clinic's Neurological Institute. Rachael, welcome to Neuro Pathways.

Rachael Ferrari, MD: Thank you so much. It's such a pleasure to be here today and to talk about such a topic that's near and dear to my heart.

Glen Stevens, DO, PhD: Well, that's great. So, Rachael, first, why don't you tell us a little bit about yourself, how you came to the Cleveland Clinic, and what do you do on a daily basis?

Rachael Ferrari, MD: Sure. So to provide my background, I'm proud to say I completed my psychiatry residency training at Wright State University in Dayton, Ohio, where I had incredible mentorship from outstanding clinicians in the field of IDD psychiatry. During my training, I developed a strong interest in working with this patient population while providing outpatient telehealth psychiatric services at Access Ohio. And, while Cleveland geographically was of interest to me due to most of my family living in the area, I joined the Cleveland Clinic as I envisioned, a robust academic system, which would be an excellent place to care for this complex patient population, including ample opportunities to develop unique clinic models of care and to teach future psychiatrists who would hopefully be interested to go into this field, as well.

Glen Stevens, DO, PhD: Well, good. So, to start things off with intellectual and developmental disabilities, how many people are we talking that this encompasses?

Rachael Ferrari, MD: So, it includes about one percent of our population. Now, that being said, individuals with intellectual and developmental disabilities are three to four times more likely to have a comorbid psychiatric illness than our general patient population. So, as psychiatrists, we see a much larger of our practice of patients with intellectual and developmental disabilities.

Glen Stevens, DO, PhD: So, for intellectual disabilities, I take it these are patients with problems with learning, reasoning, problem solving, adaptive behaviors, those types of things. And developmentally, could be intellectual, could be physical, could be both. So, a wide range of patients that would include things such as autism, behavioral disorders, brain injury patients, Down syndrome, fetal alcohol syndrome. Huge variance in the patient population. Am I in the neighborhood of those types of patients?

Rachael Ferrari, MD: That's correct, yeah, that's an excellent explanation. Generally, as an adult provider, I see patients 18 years and above. But technically, to qualify for an intellectual and developmental disability, this would have to be a disability that started in childhood, so when an individual's younger than 18 years. But there's a variety of genetic conditions, different types of exposures in utero that could lead to these types of conditions, as well as autism, in a variety of levels of intellectual disability, from very mild to severe levels, so from patients with the ability to completely verbally express how they feel, to individuals who are completely nonverbal and use gestures or rely on caregivers to help them communicate.

Glen Stevens, DO, PhD: So, to help our listeners out here, on a daily basis, tell us about the patients that come in to see you, IDDS patients, and how they present.

Rachael Ferrari, MD: On an average day, I see adult patients, so patients 18 years and above, in an outpatient psychiatric setting, as I said, with different levels of intellectual disability, from mild to severe and/or autism spectrum disorder. And the patients present to me with a chief psychiatric complaint. Now, that can include a variety of things such as depressive mood symptoms, anxious mood symptoms, having hallucinations, irritability. More often, as seen more so in this patient population, a challenging behavior, which can be something like yelling, throwing items, refusing to go places, biting others, trying to harm themselves or someone else. And generally, my patient referrals come from both family medicine providers at the Cleveland Clinic, as well as pediatric psychiatric providers as part of their transition of care from pediatrics to adult care.

Glen Stevens, DO, PhD: So, how prevalent are psychiatric comorbidities in this patient population? I take it quite prevalent, but what's the incidence?

Rachael Ferrari, MD: So, it is three to four times more likely for patients with intellectual and developmental disabilities to have a comorbid psychiatric illness. And in fact, we do speculate that the rates are probably even higher than that. But due to diagnostic overshadowing, which is the unfortunate assumption that a challenging behavior or a mood symptom is just due to the patient's intellectual disability rather than an underlying psychiatric condition, we think many more patients have psychiatric illnesses and are missed.

But I see a variety of presentations in my outpatient practice. I diagnose many common psychiatric illnesses, including major depressive disorder, generalized anxiety disorder, obsessive compulsive disorder, bipolar disorder and schizophrenia to name a few. And while individuals with a mild level of intellectual disability often express symptoms that are consistent with our diagnostic and statistical manual in psychiatry, patients who are less verbal, so those are patients with more of a moderate to severe range of ID, can present with symptoms that are different and can include more challenging behavior similar to irritability or maybe refusal types of behaviors.

Glen Stevens, DO, PhD: So, when patients come in to see you, do you screen them with some sort of a standardized protocol? Or, it's really from the patient or the caregiver?

Rachael Ferrari, MD: Great question. So generally, as far as the diagnosis of an intellectual disability, many of these patients, because I'm an adult provider, already come to me with a diagnosis of an intellectual disability. They may have seen a pediatric psychiatrist or a neuropsychologist. Rarely though, those individuals were missed during childhood. And then when they present to me, I hear a long-term history of difficulties with intellectual functioning and then adaptive functioning, which includes abilities to take care of themselves, manage their finances, manage their hygiene routines, communicate socially. So, I am able to make a basic diagnosis of an intellectual disability if they show deficits in both intellectual and adaptive functioning on clinical exam.

But if someone needs to apply for certain community services that they haven't been linked to, I can also refer them to neuropsychology, and they do different types of IQ testing. And while IQ testing, I always like to point out does not tell us about someone's exact level of functioning because the farther away you get from the mean, the less accurate it is, of course, it just gives us a number basically that meets the thresholds so someone can get connected to the services that they need.

And then for the psychiatric diagnoses, I rely on the DM-ID-2, which is actually the diagnostic manual in psychiatry for ID specifically. So, when you go through that manual, you see all the psychiatric illnesses. For example, with generalized anxiety disorder, you notice that the less verbal a patient is, the less able they are to say that they're having anxious thoughts, that they're having difficulties controlling anxious thoughts. But you're more likely to see that expressed as them being very distressed. Maybe they're pacing around, maybe they appear fearful, they're wide eyed. They're suddenly refusing to go somewhere, and they're acting really afraid. They're clinging to a parent and yelling because they don't want to do something by themselves. So, I rely on that diagnostic and statistical manual for ID to make the psychiatric diagnoses.

Glen Stevens, DO, PhD: And what percentage of your patients would you see alone versus or with a caregiver, a loved one?

Rachael Ferrari, MD: That's an excellent question. So, the majority of the patients that I see with intellectual disabilities, they do have a caregiver attend the visit, which is excellent. I always tell my patients I love to see family support. But it's so important to identify who these caregivers are, right? Who is in the room with the patient? Is it a parent? Is it a different family member? Is this a guardian? Is this a power of attorney? Is it a staff member? And also, how long have they known the patient? Because ideally, you want to speak with someone who has known the patient at least six months or longer to know that they probably have some understanding of what their healthy baseline looks like.

And then the other important thing to think about is balancing that interview, right? So, while in our general adult patient population, many of our patients show up on their own, they can provide the whole history themselves, we don't that often have to call someone for collateral. With this patient population, especially the less verbal that they are, we do need that collateral information to understand what's happening in their life, how their mood symptoms have presented to the people that know them best. But you want to balance that with interacting with your patient directly. So, I always set the precedent that I like to start the visit with interacting with my patient. I like to ask the family, "How do they communicate with you when you're at home? Do they communicate verbally? Do they use gestures? Do they use tones? Do they use pictures? If there's certain tools you use at home, bring those in and we'll use them at the appointment." But I always like to interact with the patient directly and start with topics that are familiar to them, things that bring them joy, something that they got to do recently that was fun so that we start the visit out developing rapport and allowing them to open up. Because for many of these patients, it is really an event for them to get to the office and interact with someone new. So, it's important to start with questions that are less intimidating and then also getting that important collateral from the family.

But you can imagine, if you start right away with the family that's present, just talking about a challenging behavior like, "Oh, I heard they're biting someone. Tell me about that." The patient would likely withdraw, the rapport would be damaged, you'd likely miss an important part of history gathering from the patient.

So, to answer your question, the majority of my patients do present with family, which I highly encourage. But I always like to spend time directly interacting with my patients, developing that relationship with them, making sure they feel comfortable and heard.

Glen Stevens, DO, PhD: With what you've described, making an accurate diagnosishas got to be very complicated and difficult. Most of these kids will come with a diagnosis because it was present since childhood. How often does the diagnosis change, or do you add to the diagnosis?

Rachael Ferrari, MD: At an initial appointment, I do a lot of gathering general background information, including understanding what is their healthy baseline. I don't like to make assumptions. I like to ask when they're at their happiest, what does their life look like? How long ago was that? And then I also like to ask, as we get later into their interview, at their worst, right? At their worst depression or their worst psychosis, what did that look like? Because I don't like to assume that the last provider was 100% correct, I like to build off of what they've already come in with and presented with.

But to answer your question, there are still times where people come to me and the diagnosis isn't accurate. I think I'm less inclined to ask myself, "Is the diagnosis accurate?" if someone's doing really well, right? If somebody's doing really well, it gives me more time to reassess. We can take our time with it and really look at historical symptoms. But when someone's doing really poorly, the question becomes emphasized, right? Because they're not functioning well, why is that? Was there a misdiagnosis?

So with psychiatric illnesses, it's not uncommon that someone will come to me, and then I'll see that it's actually something else. As far as intellectual disability goes, many of my patients come to me initially already diagnosed with an intellectual disability and connected with the board of DD, and they have supports in place. But the patients who don't have that, that is a huge misdiagnosis because they've gone their whole lives without a waiver that gets them access to respite care for their families, for them to go to day programs and other kinds of support. So, that is something that is so important to catch if it's misdiagnosed, as well.

Glen Stevens, DO, PhD: So, as I get older, every time I see patients, they always look at me and go, "You're not going to retire, you're not going to retire, are you?" Because it's difficult when you've had a provider for a long period of time. And of course, you're seeing all these children that have been managed by somebody else for a decade, longer than that, and then they come see you. How do you make that transition? Because you're dealing with people that already have disabilities, and now you're going to ask them to now confide and trust you. How do you do that?

Rachael Ferrari, MD: Yeah, so you're right that the transition of care is a big important thing. And if it's done well, the rapport is built and the patient's able to open up, and you're able to build upon what the last provider was already working on. But if you don't set those things up, it's kind of like taking out the foundation of the house. The whole thing falls apart.

So in fact, I've had the amazing experience with transition of care where I get to work with a whole team of providers, family medicine, general pediatrics, pediatric psychiatry, and we work together as a team actually, through a grant funded project of the Cleveland Clinic, where we are working on identifying this patient population, those with intellectual and developmental disabilities and comorbid psychiatric conditions and complex medical illnesses, and doing what's called a “warm handoff,” where we actually have a visit where multiple providers are present, the pediatric provider, the adult provider. And it's kind of like a welcome visit for the patient or they get to see their other provider, say goodbye to them, and we get to tell them, "You're in great hands with your new provider. We've told them about the things we've worked on.”

And the things that are less sensitive to present in front of the patient, we will. We could talk about, "You know, we talked about your medicines, these are the medicines you're taking, and these were the things we're working on currently." Whereas some of the more sensitive topics, we tend to have a provider-to-provider meeting beforehand to go over because it can be really destabilizing for someone to go over all of their suicide attempts right in front of a group. So, it's much better to have the providers meet, discuss some of that sensitive information, the way that the patient prefers to communicate, the things that they've been working on. And then meeting with the patient as a team as part of that transition of care has worked really well for our patients.

And it's important to start preparing these patients early, right? So transitional age adults are adults from 18 to 25 years old. And unfortunately, many patients, they're not necessarily aware that they're about to go through a transition. And then suddenly, they hit 25, 26 and their pediatrician can't see them, right? And that's the worst-case scenario. Versus if you tell a patient between the ages of 18 and 20, "Hey, we're going to start discussing your future transition of care. It's not going to happen right now, but we want to pick out providers for you. We want to talk about that. What is it that you want your adult provider to know about you? Do you have any preferences for an adult provider? Where do you want to see them? Do you want to see them in the clinic? Somewhere else? How do you want them to interact with you and your family? Anything specific you want us to tell them about you?"

So that allows a much smoother transition, and the rapport is strong. And you can really build off of what the last provider has worked on. For example, I recently had a meeting with a pediatric psychiatric provider, and she was discussing a patient that she's transferring to me. And the patient has a history of anxiety and ADHD, and she was able to discuss how recently the anxiety had been worsening. And when stimulant medication was added, it seemed to really amplify the anxiety rather than help the ADHD. So, it gave me a really solid picture about what may be working and not working for the patient.

She was also able to describe a pretty complex biopsychosocial history for this patient of who's involved as far as who's caregiving for the patient, the losses that she's been through recently. She's under guardianship, but it didn't seem like it was appropriate based on the patient's level of communication. So, there was a lot of really important information that I received in that handoff that will really help me provide amazing care for this patient.

Glen Stevens, DO, PhD: Yeah, I think that team approach is the way to do it. And what you've described is fantastic, so I'm really glad to see you guys are doing that. So, let's say I'm a primary care physician and I'm seeing a patient. And this patient has never been diagnosed with IDDS, but I think that they might have one. Screening tests that are around? I should just send them to a psychiatrist. Maybe the patient will get upset if I bring these things up? But what do I do?

Rachael Ferrari, MD: That's a great question. So, I will say if you have a patient who specifically asks if they have autism spectrum disorder, this is something I wanted to touch upon because we've noticed an increase in referrals for adult autism, people who are missed as children. And a large reason for this was because when the diagnostic and statistical manual initially described the symptoms of autism, the research was based on a young male population. So, it is true that there are many adults out there with autism who were missed because they didn't really have the symptoms that were stereotypical as were presented in the earlier versions of the DSM.

So, as a primary care provider, one of the easiest screeners for this is the Autism Spectrum Quotient 10, which is a 10-item questionnaire. If someone has a score of six or more, this is indicative of possible autism. The sensitivity is about 79%, and the specificity is about 87%. So, it's a good screening test, and if someone screens positive, then it is appropriate to refer them to either a psychiatrist or a psychologist, or an autism center, for further assessment for possible autism.

And then for patients who have a possible intellectual disability, it's important to get a sense of what they are looking for, right? If they're an individual who needs more resources, they need to be connected with a day program, they need more supports in place; it's really, really imperative that they have this diagnosis. Or, maybe they're a student that they wanted to further their education, but they have a mild level of intellectual disability, and they need to be qualified for disability services at the school, right? So for those patients, you could refer them to neuropsychology or to psychiatry to get assessed and diagnosed with an intellectual disability.

Glen Stevens, DO, PhD: Novel treatment options or approaches for this patient population, what's the hot interest?

Rachael Ferrari, MD: The use of telehealth in this population has expanded even beyond the pandemic, including home-based medical care. And recently, through the Developmental Disability Practice Based Research Network, which I have a pleasure to be a part of, and as a collaboration of self-advocates, family members, support staff, service providers, health professionals, they looked specifically at what are some of the benefits of telehealth in this population. And we noticed that there were a lot of benefits, right? The patient is more comfortable in that environment. It's less traumatic for them, especially if they have a lot of sensory needs and the office is going to be overstimulating for them. You may have more access to caregivers who know the patient well, who can provide the history, as well. And there's less transportation concerns because some of these patients live in very rural areas.

Along these same lines, StationMD is a new telehealth program that I found out about that offers individuals with ID access to specially trained ER doctors from the comfort of their home. And they have successfully reduced the costs associated with unnecessary ER transfers and hospital stays, right? And you can imagine for any of our patients, no one wants to be in the hospital, but especially for these patients that it's really difficult for them to be away from home, the hospital is a very tough place to be. So being able to provide that care quickly, efficiently, and to hopefully prevent a hospitalization is also a new area.

And then I, myself, recently started a new model of care at the Lakewood Family Health Center where I do an IDD psychiatric consultation clinic. And this unique model includes providing a one-time psychiatric consult, including diagnostic assessment and psychiatric medication recommendations, which the family medicine residents participate in as part of their education. And then our consultation team directly collaborates with the PCPs over at Lakewood who had referred the patients and who continue the ongoing management of the recommended psychiatric medicine regimen with the goal being that we want to improve access to care, improve resident education, and improve collaboration between specialty providers.

Glen Stevens, DO, PhD: Well, that's great. I'm sure everybody's very excited about this opportunity, so fantastic. So, anything that we haven't covered that you wanted to point out or you thought was important that we missed?

Rachael Ferrari, MD: One thing I just wanted to point out was the risk of diagnostic overshadowing. I think sometimes there's misdiagnosis because there's this assumption that this person's acting in this unfavorable way, or they have a challenging behavior because they have an intellectual disability. Or, that's just a part of who they are. When you actually look at the individual and what their healthy baseline is, there are actually significant signs of underlying psychiatric illness leading to some of those challenging behaviors. I always say there's a reason for all the things we do, even the things we don't want to do, right? So, finding the answer to that is so important. And as always, when treating this patient population, you want to acknowledge that our patients are unique individuals whom we should approach, of course, with compassion, respect, without assumption, and with a desire for patient-centered care.

Glen Stevens, DO, PhD: Well, excellent. Rachael, I really appreciate you taking the time to educate us more on intellectual and developmental disabilities and their coexistence with mental health conditions. Your insights have been very helpful, proud of all the work that you're doing, and good luck with the new program on the West side. And look forward to having you back in the future.

Rachael Ferrari, MD: Thank you so much, Glen. It was such a pleasure to have this opportunity and to educate our providers about this important patient population.

Closing: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website. That's @CleClinicMD, all one word. And thank you for listening.