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Interviewing and Evaluating Patients With Intellectual Disability
Julie Gentile, MD
Professor of psychiatry at the Boonshoft School of Medicine, Wright State University. Project director for Ohio’s Coordinating Center of Excellence in Mental Illness & Intellectual Disability
Dr. Gentile has disclosed that she has no relevant financial or other interests in any commercial companies pertaining to this educational activity.
TCPR: Let’s start with the basics. What exactly is the definition of intellectual disability (ID)?
Dr. Gentile: DSM-5 identifies it as an IQ of 70 or lower. Then there are ranges: mild, moderate, and severe/profound. Someone in the mild range has an IQ, generally, of 70 at the upper end and 50 to 55 at the lower end. The moderate range is 50 or 55 down to 35 or 40. Severe, on the upper end, is 35 to 40, and profound is about 25 or lower.
TCPR: It sounds like there’s overlap. Can absolute distinctions be made?
Dr. Gentile: Often, yes, because the diagnosis depends on more than the number. You also have to look at three domains. The conceptual domain is about evaluating skills such as language, reasoning, and memory. The social domain refers to empathy, interpersonal communication skills, and the ability to form and maintain relationships. And the practical domain centers on self-management, such as personal care, money management, and job responsibilities. When you consider these domains, it becomes easier to identify the severity of the ID. That’s important because patients’ categorizations determine whether they qualify for certain resources in the realms of community support and educational programs, for example.
TCPR: How common is ID? How likely is a psychiatrist to see patients with the condition?
Dr. Gentile: It’s very likely that patients with ID will be incorporated into every practice setting. The prevalence of developmental disability in the U.S. is about 3.65%; it’s about 2 times more common in males. Most patients—about 85%—fall into the mild range. Ten percent are in the moderate range, and that leaves 3% to 4% in the severe range and 1% to 2% in the profound range (https://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html).
TCPR: Should we be giving brief IQ tests to some of our patients and assessing their conceptual, social, and practical domains to confirm our suspicions about their degree of ID?
Dr. Gentile: If patients are known to have ID, they typically are already tied in with a local board of intellectual disability, in their home county, and have already had IQ testing. Typically that testing is done by a psychologist who has special training in ID. The domains will have been evaluated, too. So by having access to the medical records, you’ll have a very good idea of where patients falls in the ID range.
TCPR: Can you give us a brief thumbnail of what a person in each range might be like?
Dr. Gentile: Very likely, someone in the mild range—and again, that’s most people with ID—will hold a supported employment opportunity. You’ve likely interacted with people having mild ID in the community; they may be employed at grocery stores or hotels, and often have a job coach. They’ll have expressive language skills but will communicate in concrete terms. Someone in the moderate range typically has very limited language skills, and usually participates in specialized day programming once graduating from high school. Those in the severe/profound range will have very limited or no verbal capability, and in those circumstances, you’ll use your observational skills and collateral data sources—the person who has brought the patient to your office—to a greater extent.
TCPR: How do you approach a patient depending on where they fall?
Dr. Gentile: It’s best to communicate with all patients on their own terms. For example, for someone who has mild ID, use their mean length of utterance. If they are speaking to you in sentences or fragments that are six to eight words long, do the same with them. You also want to attend to memory and attention deficits and impulsivity. For some patients, briefer appointments that are more frequent might work better. Or you might opt for more lengthy appointments if patients have limited language skills and need more time to tell their story. No matter the level of disability, you can absolutely build an alliance with the patient quickly and accomplish everything you would with a neurotypical patient.
TCPR: What can you do to build that alliance?
Dr. Gentile: It may sound simplistic, but I always say to talk to the patient. It’s very common for patients with ID to have been seen by prior psychiatrists and not to have been addressed during the appointment. Even if patients are nonverbal, it’s still very important to talk to them because typically, their receptive language skills are much better developed than their expressive language skills. You should always assume that the patient can understand everything that’s being said. So you introduce yourself: “Hi, I’m Dr. So-and-So. We are here today to figure out a way to help you feel better. We may be touching on some sensitive topics. Please let me know—give me a sign—if you want to move onto a different topic or you have something you need to tell me.”
TCPR: So we shouldn’t talk to the person who has brought the patient in and is also sitting in the room?
Dr. Gentile: It is important to “manage the triangle,” so to speak, so you have to talk to and develop rapport with both parties. With luck, the caregiver is familiar with the patient and will be able to give you critical information during the session. And the more severe the ID, the more extensively you’ll rely on that caregiver’s knowledge. If the caregiver does not know the patient well or is not able to answer the questions you pose, ask if it’s possible for someone more familiar with the patient to come for the next appointment. I recommend starting the appointment by talking directly to the patient, then going on to get information from the caregiver, and finally addressing the information with the patient to the greatest degree possible.
TCPR: Why is doing it this way so important?
Dr. Gentile: Even a patient with no verbal skills will immediately pick up on any disrespect from you. Remember, patients are usually not self-referred; they are mandated to attend treatment. They have no control in this process. That can absolutely affect their motivation, so they need to see your genuine desire to help so that they will buy into the treatment. This is crucial because most patients with ID come to us with some form of aggression—self-injurious behavior, physical aggression, verbal aggression. You want to be able to help them adopt an appropriate treatment plan that fits their needs.
TCPR: What do you mean?
Dr. Gentile: The therapist can’t just be yet another person in the delivery care system. Usually, patients already have a case manager, a support/service administrator, several direct care staff members, a group home manager, maybe dozens of people in positions of authority that make decisions for them, and they often feel as if they have no control over their lives. Psychiatrists should distinguish their role as safe and trusted professionals who are committed to hearing patients’ stories and helping create a treatment plan that focuses on the etiology of the behavior to address the underlying problem. If you talk to patients and you’re honest about communication difficulty—“I’m sorry, I didn’t catch that”—you’re telling them you’re interested in their story from their perspective. And their perspective will give you clues as to the function of the behavior, and from there you can arrive at solutions rather than being authoritarian.
TCPR: Can you give us some more tips on how to communicate with someone whose verbal skills are limited or nonexistent?
Dr. Gentile: There are so many ways to pick up critical information, to piece together an accurate diagnosis and a formulation for treatment. These include your observational skills, the patient’s expressions of affect, and the patient’s attention span and activity level. Also, many patients have iPads with apps designed for users with limited or no language skills. With some apps, the patient can touch the screen and the iPad will respond for them with pre-recorded common answers. Sometimes, as attending caregivers describe some of the behaviors they have observed, patients will “talk” by literally acting them out. They’re listening, they’re hearing every word, and they will sometimes recreate problem behaviors during the appointment. Many presentations are behavioral rather than verbal.
TCPR: For patients with mild ID who can talk—and these are going to be most of the patients with ID that we see—what else can we do besides speak to them in sentence lengths that mirror their own?
Dr. Gentile: Make sure to use cross-questioning techniques. Asking yes-or-no questions can be useful at times, but if patients have a trauma history, for example, they may answer “yes” to everything or “no” to everything as an artifact: something that has historically kept them safe. So if you say, “Do you sleep at night?” and the patient says “yes,” you want to cross-question with, “Do you ever have problems sleeping?” That tells you whether you’re getting accurate data. Multiple-choice questions present a different kind of challenge. If you’re giving patients option A, B, or C, they will be very likely to choose C because with the memory issues in this patient population, that may be the only choice they recall. Double-barreled questions are another issue. If you ask, “Do you like your home and your staff there?” it’s likely that you’ll be given limited information because the patient can’t handle two questions at once. It’s better to ask one question at a time even though that takes longer.
TCPR: Any suggestions for how to ask about events that have occurred in the past? I assume it might be hard for ID patients to provide accurate information.
Dr. Gentile: Link questions about the past to events that your patient cares about. Salient events include birthdays, holidays, significant life events, and favorite hobbies. You can get those pieces of information from the caregiver and then use them during the questioning process. For example, if you’re trying to get information about a prior event, anchoring it to “Bowling Night” will be more meaningful than asking about “last Tuesday.”
TCPR: Can you give an example of how this actually plays out therapeutically?
Dr. Gentile: I had a patient in the mild range of ID—with expressive verbal skills—who had punched a hole in a wall. By speaking with him in ways that allowed him to communicate information effectively, I was able to learn that his favorite television show came on at 4 o’clock. A new group home manager arrived at his home to interview him just before that show began. When the patient asked for the interviewer to wait until after his show was finished, no one listened to him, so he punched the wall. We often just medicate because we don’t take the time (or don’t have the time because of managed care) to determine the etiology of the behavior and really hear patients’ stories in their own words. The request from staff during the appointment is often, “We need more antipsychotics.” There’s so much unnecessary polypharmacy (For more on psychopharmacology in ID patients, see the accompanying article by Dr. Gentile and Dr. Dixon). But when you hear a patient’s story, you can provide support to the patient as well as education to the staff, and it’s an amazing experience.
TCPR: Can you go through how this would work with someone who doesn’t have expressive language skills? Even with observation and other techniques, it’s hard to get a picture of how people who can’t speak can tell their story in a way that allows you to help them.
Dr. Gentile: I had a patient with profound ID come in with a severe, extensive abuse history. I asked his permission for the caregiver to share that history with me: Did he feel safe in allowing her to share? He agreed by nodding. As she told his story of neglect, sexual abuse, and physical abuse, I could see as he was listening that he was curled up in his chair in the fetal position. After she finished, I looked at him and said, “I am so sorry that you had to suffer this type of abuse, and I can see that you are a survivor. You are here today allowing me to hear your story.” And as I was talking to him, addressing him, telling him I was sorry, he literally put his feet back down on the floor. I went on to tell him it was an honor for me to work with him, that we were going to figure out a way to help him further recover from his trauma, and we would move forward and help him make his life look like what he envisioned for his own development. It is very important to communicate to patients with ID that they have the ability to recover from trauma; you must empower them and tell them you are not there to save them—they have the power to save themselves. You are there to support and facilitate.
TCPR: Wow, I’m sure many readers would be surprised about how much communication is possible with this population.
Dr. Gentile: I’ve seen nearly 4,000 patients with ID over the years, and it’s a myth that you can’t get good information from them. If you think these patients do not understand what’s going on, all you have to do is observe. Violence against persons with ID is twice the rate compared to those without ID, while serious violent victimization is more than three times that of the general population—and these numbers only include reported crimes (Bureau of Justice Statistics Report, 2012). They’re vulnerable for so many reasons: They can’t report, people don’t understand or believe them. And that critical piece of being able to tell their story, to process the trauma and move forward, often does not happen. Silence is the enemy when it comes to trauma, and it’s our job to give voice to these stories to help these patients move forward.
TCPR: This has been fascinating. Any last thoughts?
Dr. Gentile: A lot of therapists will say, “I can’t treat people with ID.” They don’t think it’s possible. It is challenging. But if you talk to patients in their own communication style, if you identify yourself as having a completely different role from everyone else in their life and let them know right up front that this is a confidential relationship, that it’s private and safe, that there are boundaries and they can decide what gets shared with their management team, there are potential great rewards. People with ID and mental illness may be considered the most vulnerable in our society, but in my opinion, they are also the strongest and most inspiring survivors.
TCPR: Thank you very much for your time, Dr. Gentile.
General PsychiatryDr. Gentile: DSM-5 identifies it as an IQ of 70 or lower. Then there are ranges: mild, moderate, and severe/profound. Someone in the mild range has an IQ, generally, of 70 at the upper end and 50 to 55 at the lower end. The moderate range is 50 or 55 down to 35 or 40. Severe, on the upper end, is 35 to 40, and profound is about 25 or lower.
TCPR: It sounds like there’s overlap. Can absolute distinctions be made?
Dr. Gentile: Often, yes, because the diagnosis depends on more than the number. You also have to look at three domains. The conceptual domain is about evaluating skills such as language, reasoning, and memory. The social domain refers to empathy, interpersonal communication skills, and the ability to form and maintain relationships. And the practical domain centers on self-management, such as personal care, money management, and job responsibilities. When you consider these domains, it becomes easier to identify the severity of the ID. That’s important because patients’ categorizations determine whether they qualify for certain resources in the realms of community support and educational programs, for example.
TCPR: How common is ID? How likely is a psychiatrist to see patients with the condition?
Dr. Gentile: It’s very likely that patients with ID will be incorporated into every practice setting. The prevalence of developmental disability in the U.S. is about 3.65%; it’s about 2 times more common in males. Most patients—about 85%—fall into the mild range. Ten percent are in the moderate range, and that leaves 3% to 4% in the severe range and 1% to 2% in the profound range (https://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html).
TCPR: Should we be giving brief IQ tests to some of our patients and assessing their conceptual, social, and practical domains to confirm our suspicions about their degree of ID?
Dr. Gentile: If patients are known to have ID, they typically are already tied in with a local board of intellectual disability, in their home county, and have already had IQ testing. Typically that testing is done by a psychologist who has special training in ID. The domains will have been evaluated, too. So by having access to the medical records, you’ll have a very good idea of where patients falls in the ID range.
TCPR: Can you give us a brief thumbnail of what a person in each range might be like?
Dr. Gentile: Very likely, someone in the mild range—and again, that’s most people with ID—will hold a supported employment opportunity. You’ve likely interacted with people having mild ID in the community; they may be employed at grocery stores or hotels, and often have a job coach. They’ll have expressive language skills but will communicate in concrete terms. Someone in the moderate range typically has very limited language skills, and usually participates in specialized day programming once graduating from high school. Those in the severe/profound range will have very limited or no verbal capability, and in those circumstances, you’ll use your observational skills and collateral data sources—the person who has brought the patient to your office—to a greater extent.
TCPR: How do you approach a patient depending on where they fall?
Dr. Gentile: It’s best to communicate with all patients on their own terms. For example, for someone who has mild ID, use their mean length of utterance. If they are speaking to you in sentences or fragments that are six to eight words long, do the same with them. You also want to attend to memory and attention deficits and impulsivity. For some patients, briefer appointments that are more frequent might work better. Or you might opt for more lengthy appointments if patients have limited language skills and need more time to tell their story. No matter the level of disability, you can absolutely build an alliance with the patient quickly and accomplish everything you would with a neurotypical patient.
TCPR: What can you do to build that alliance?
Dr. Gentile: It may sound simplistic, but I always say to talk to the patient. It’s very common for patients with ID to have been seen by prior psychiatrists and not to have been addressed during the appointment. Even if patients are nonverbal, it’s still very important to talk to them because typically, their receptive language skills are much better developed than their expressive language skills. You should always assume that the patient can understand everything that’s being said. So you introduce yourself: “Hi, I’m Dr. So-and-So. We are here today to figure out a way to help you feel better. We may be touching on some sensitive topics. Please let me know—give me a sign—if you want to move onto a different topic or you have something you need to tell me.”
TCPR: So we shouldn’t talk to the person who has brought the patient in and is also sitting in the room?
Dr. Gentile: It is important to “manage the triangle,” so to speak, so you have to talk to and develop rapport with both parties. With luck, the caregiver is familiar with the patient and will be able to give you critical information during the session. And the more severe the ID, the more extensively you’ll rely on that caregiver’s knowledge. If the caregiver does not know the patient well or is not able to answer the questions you pose, ask if it’s possible for someone more familiar with the patient to come for the next appointment. I recommend starting the appointment by talking directly to the patient, then going on to get information from the caregiver, and finally addressing the information with the patient to the greatest degree possible.
TCPR: Why is doing it this way so important?
Dr. Gentile: Even a patient with no verbal skills will immediately pick up on any disrespect from you. Remember, patients are usually not self-referred; they are mandated to attend treatment. They have no control in this process. That can absolutely affect their motivation, so they need to see your genuine desire to help so that they will buy into the treatment. This is crucial because most patients with ID come to us with some form of aggression—self-injurious behavior, physical aggression, verbal aggression. You want to be able to help them adopt an appropriate treatment plan that fits their needs.
TCPR: What do you mean?
Dr. Gentile: The therapist can’t just be yet another person in the delivery care system. Usually, patients already have a case manager, a support/service administrator, several direct care staff members, a group home manager, maybe dozens of people in positions of authority that make decisions for them, and they often feel as if they have no control over their lives. Psychiatrists should distinguish their role as safe and trusted professionals who are committed to hearing patients’ stories and helping create a treatment plan that focuses on the etiology of the behavior to address the underlying problem. If you talk to patients and you’re honest about communication difficulty—“I’m sorry, I didn’t catch that”—you’re telling them you’re interested in their story from their perspective. And their perspective will give you clues as to the function of the behavior, and from there you can arrive at solutions rather than being authoritarian.
TCPR: Can you give us some more tips on how to communicate with someone whose verbal skills are limited or nonexistent?
Dr. Gentile: There are so many ways to pick up critical information, to piece together an accurate diagnosis and a formulation for treatment. These include your observational skills, the patient’s expressions of affect, and the patient’s attention span and activity level. Also, many patients have iPads with apps designed for users with limited or no language skills. With some apps, the patient can touch the screen and the iPad will respond for them with pre-recorded common answers. Sometimes, as attending caregivers describe some of the behaviors they have observed, patients will “talk” by literally acting them out. They’re listening, they’re hearing every word, and they will sometimes recreate problem behaviors during the appointment. Many presentations are behavioral rather than verbal.
TCPR: For patients with mild ID who can talk—and these are going to be most of the patients with ID that we see—what else can we do besides speak to them in sentence lengths that mirror their own?
Dr. Gentile: Make sure to use cross-questioning techniques. Asking yes-or-no questions can be useful at times, but if patients have a trauma history, for example, they may answer “yes” to everything or “no” to everything as an artifact: something that has historically kept them safe. So if you say, “Do you sleep at night?” and the patient says “yes,” you want to cross-question with, “Do you ever have problems sleeping?” That tells you whether you’re getting accurate data. Multiple-choice questions present a different kind of challenge. If you’re giving patients option A, B, or C, they will be very likely to choose C because with the memory issues in this patient population, that may be the only choice they recall. Double-barreled questions are another issue. If you ask, “Do you like your home and your staff there?” it’s likely that you’ll be given limited information because the patient can’t handle two questions at once. It’s better to ask one question at a time even though that takes longer.
TCPR: Any suggestions for how to ask about events that have occurred in the past? I assume it might be hard for ID patients to provide accurate information.
Dr. Gentile: Link questions about the past to events that your patient cares about. Salient events include birthdays, holidays, significant life events, and favorite hobbies. You can get those pieces of information from the caregiver and then use them during the questioning process. For example, if you’re trying to get information about a prior event, anchoring it to “Bowling Night” will be more meaningful than asking about “last Tuesday.”
TCPR: Can you give an example of how this actually plays out therapeutically?
Dr. Gentile: I had a patient in the mild range of ID—with expressive verbal skills—who had punched a hole in a wall. By speaking with him in ways that allowed him to communicate information effectively, I was able to learn that his favorite television show came on at 4 o’clock. A new group home manager arrived at his home to interview him just before that show began. When the patient asked for the interviewer to wait until after his show was finished, no one listened to him, so he punched the wall. We often just medicate because we don’t take the time (or don’t have the time because of managed care) to determine the etiology of the behavior and really hear patients’ stories in their own words. The request from staff during the appointment is often, “We need more antipsychotics.” There’s so much unnecessary polypharmacy (For more on psychopharmacology in ID patients, see the accompanying article by Dr. Gentile and Dr. Dixon). But when you hear a patient’s story, you can provide support to the patient as well as education to the staff, and it’s an amazing experience.
TCPR: Can you go through how this would work with someone who doesn’t have expressive language skills? Even with observation and other techniques, it’s hard to get a picture of how people who can’t speak can tell their story in a way that allows you to help them.
Dr. Gentile: I had a patient with profound ID come in with a severe, extensive abuse history. I asked his permission for the caregiver to share that history with me: Did he feel safe in allowing her to share? He agreed by nodding. As she told his story of neglect, sexual abuse, and physical abuse, I could see as he was listening that he was curled up in his chair in the fetal position. After she finished, I looked at him and said, “I am so sorry that you had to suffer this type of abuse, and I can see that you are a survivor. You are here today allowing me to hear your story.” And as I was talking to him, addressing him, telling him I was sorry, he literally put his feet back down on the floor. I went on to tell him it was an honor for me to work with him, that we were going to figure out a way to help him further recover from his trauma, and we would move forward and help him make his life look like what he envisioned for his own development. It is very important to communicate to patients with ID that they have the ability to recover from trauma; you must empower them and tell them you are not there to save them—they have the power to save themselves. You are there to support and facilitate.
TCPR: Wow, I’m sure many readers would be surprised about how much communication is possible with this population.
Dr. Gentile: I’ve seen nearly 4,000 patients with ID over the years, and it’s a myth that you can’t get good information from them. If you think these patients do not understand what’s going on, all you have to do is observe. Violence against persons with ID is twice the rate compared to those without ID, while serious violent victimization is more than three times that of the general population—and these numbers only include reported crimes (Bureau of Justice Statistics Report, 2012). They’re vulnerable for so many reasons: They can’t report, people don’t understand or believe them. And that critical piece of being able to tell their story, to process the trauma and move forward, often does not happen. Silence is the enemy when it comes to trauma, and it’s our job to give voice to these stories to help these patients move forward.
TCPR: This has been fascinating. Any last thoughts?
Dr. Gentile: A lot of therapists will say, “I can’t treat people with ID.” They don’t think it’s possible. It is challenging. But if you talk to patients in their own communication style, if you identify yourself as having a completely different role from everyone else in their life and let them know right up front that this is a confidential relationship, that it’s private and safe, that there are boundaries and they can decide what gets shared with their management team, there are potential great rewards. People with ID and mental illness may be considered the most vulnerable in our society, but in my opinion, they are also the strongest and most inspiring survivors.
TCPR: Thank you very much for your time, Dr. Gentile.
DSM-5 Criteria for Intellectual Disability
(also known as intellectual developmental disorder)
1. The disorder began during childhood.
2. There are deficits in intellectual functioning, such as reasoning, learning, and problem solving.
3. There are deficits in daily functioning, such as difficulties with independent living and social skills.
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