Dr. Karyn Harvey has worked in the field of intellectual disabilities for over 25 years. In that time she’s published two books, as well as numerous articles, on therapeutic interventions for individuals with IDD. Positive Identity Development: An Alternative Treatment Approach for Individuals with Mild and Moderate Intellectual Disabilities (2009) covers topics on theory and guidance for clinicians utilizing therapy for individuals with ID. Trauma-Informed Behavioral Interventions: What Works and What Doesn’t (2012) presents a trauma-informed care approach to working with individuals with ID both programmatically and clinically.
In addition to her published research, Karyn works as the Assistant Executive Director of Quality Supports for the Arc of Baltimore and as an adjunct professor at the University of Baltimore’s graduate psychology program. She has been of tremendous service as a consultant to us here at the Hogg Foundation and in the state of Texas, sharing her expertise in the field of behavioral intervention with individuals with intellectual disabilities. She’s worked with us in particular around the issue of reduction of the use of restraints in both institutional and community settings.
Dr. Harvey and I had a wide-ranging Skype conversation about the mental health needs of persons with intellectual or developmental disabilities.
Lauren Macknight: Karyn, please let me just thank you again for agreeing to sit and talk with me today.
Karyn Harvey (K): Thank you! I loved the introduction!
L: Well, let’s just jump right in. We hear a lot about people with intellectual and developmental disabilities and their challenging behaviors. The context of these conversations, however, is often about how to treat, manage, or control the behavior. So, my question is: Is the behavior the “condition” or is it actually communicating something else?
K: What a great question! Of course, it’s communicating something else. And this is the big issue because in this field we so often focus on behaviors as though the behavior is driving the person and the behavior is the issue, when it’s really a symptom. And what it’s often a symptom of is post-traumatic stress disorder.
So many of the folks that we work with have had terrible abuse. In the 2013 Spectrum Institute report it said 71% of people with disabilities reported being abused—sexually, physically, or financially. And 90% said that abuse was repeated. And that’s often on top of the baseline social trauma of being bullied, which unfortunately almost every person with a developmental disability has experienced. They’ve been called the “R” word, had difficulties on the playground, at the bus stop, and so on.
So there are so many sources of trauma that people with intellectual disabilities have experienced throughout their lives. Even in the most ideal circumstances, there’s typically some trauma. And trauma has its effects. A lot of times it does manifest behaviorally and they are communicating. It might be: “Don’t hurt me like the last staff, like the last person. And I’ll hurt you before you hurt me, so you’ll stay away from me.”
L: Why haven’t we done a better job of identifying and treating mental health conditions in people with IDD?
K: Believe it or not we’ve come a long way. When I first started in this field I kept saying, “I need to do therapy with these folks! They really need therapy.” And I was told over and over again, “You can’t do therapy with (using the language of back then) mentally-retarded people.” How horrible is that?
So we’re moving out of the dark ages. The whole field of psychology is starting to realize the toll trauma takes the mental health of humans. And finally we’re bringing it into the field of disabilities and realizing that people with disabilities are no different. We can’t think of them as another class of person, though we might need to apply what we’ve learned about trauma in different ways. So it’s an evolution.
L: Let’s delve into that more. In your book Trauma-Informed Behavioral Interventions you make the comparison between the profiles of an adult with PTSD and an adult with both ID and behavioral problems. And this comparison really resonated with me, especially the following excerpt: “These symptoms directly reflect the condition of many individuals with ID. They do not feel safe, they do not feel connected to the larger world—or, in many cases, to others at all—and they do not have power. People with ID are often the least valued, most ignored, and most vulnerable in their environment.”
What are the larger implications of trauma for all populations and how we can better address trauma for persons with IDD?
K: Well, thank you for reading my book! Yes, the impact of trauma is giant. And it’s useful to think about it in the context of PTSD. There are three areas that are symptoms of post-traumatic stress disorder and all three really manifest frequently with a lot of folks with ID.
The first one is remembering and re-experiencing. With that symptom or symptom family the person is often stuck with something horrible that happened and will talk about it over and over again. “My mother died. My mother died.” I’ve had people who talk about their mother dying, even though their mother died 20 years ago, and what we have to recognize is that to them their mother just died. What trauma can do is make it so that the past becomes the present. We cannot process it and so we can’t move on. So they are constantly re-experiencing the trauma. A lot of the folks that we work with have reoccurring nightmares and sometimes even flashbacks, where they’re there again and the past is alive. In much the same way that vets can experience flashbacks. So that first category is the re-experience.
The second is avoidance. People will go out of their way to avoid re-experiencing the trauma. They will remove themselves from their daily life and check out. We call it dissociating. I see a lot of selective mutism, for example. I’ve worked with so many people where we thought they were not able to talk. Then one day they find somebody they trust and they talk to them. This selective mutism can be particularly challenging to notice because the behavior presents as an absence of behavior. They are just completely shutting down. We also see a lot of phobias. So there are people who won’t do certain things, or exhibit fear of certain things or situations, because those activities or objects may have been associated with their trauma.
The third category is arousal, being in a hyper-aroused state, where people are agitated and on edge and saying, “Why did you say that to me?” and “What did you do to me?” They’re ready for a fight or ready to run because they’re constantly, physiologically flooded with higher levels of cortisol and adrenaline, which are associated with trauma. They have these neural pathways in their head that are just highways for overreacting to everything, because of their past trauma. When they’re in that hyper-aroused state and are very easily agitated, they can manifest behaviors such as aggression and property destruction, but it’s not because they’re trying to be destructive. It’s because of trauma.
L: In terms of helping people who have experienced trauma, how important is it to distinguish between the effects of trauma and the effects of psychiatric illness?
K: Incredibly important. Imagine someone is hearing voices and you find out they’re hearing their father who was abusive to them. They’re experiencing this over and over again, and we’re medicating them for schizophrenia, but it’s really a flashback. So you end up misdiagnosing people, they’re medicated, and it’s not working. Their behavior plans aren’t working because we’re missing the fact that they’re exhibiting signs of post-traumatic stress disorder.
It’s not always one or the other. Often it’s the effects of trauma that add to the potential psychiatric issue. But we need to be aware of both possibilities in order to develop treatments that can genuinely help.
L: Let’s talk about recovery. What are the basic conditions we need to create so that people with IDD can begin to heal from trauma?
K: Judith Herman has done some wonderful work with domestically abused women, in which she found that three things were needed in order for people to respond to treatment. I think it’s a good model.
One is having a feeling of safety. If you don’t feel safe in your life, if you’re always on guard, there’s no room to heal. You have to feel safe with the staff. If you’re living in a facility you have to feel safe with the other folks who are living there, some of whom may have aggressive behaviors. Both groups don’t feel safe to the individual very frequently.
Two is a having a sense of connection to other people. So many folks with disabilities are very isolated. They might have a boyfriend or a girlfriend, but they only see them in their day program. And they don’t have relationships and they’re not allowed to have relationships. How isolated is that? And in so many ways they’re not able to have friends like you and I do, to just express their feelings. They may not get a lot of phone calls, and just in general not have that social life that makes us feel connected, gives us emotional support and validation. That doesn’t exist to the same extent for people with disabilities. So the more isolated you are, the more you re-experience your trauma.
Isolation is also a technique that people who are abusive use. An abusive partner might say, “I don’t want you talking to your mother. I don’t want you seeing your friends.” Cults will do that too: “We don’t want you with your family. Your family doesn’t understand. You have to severe your ties.” And the more you isolate people, the more they can be controlled, and the more unhappy they are. So definitely if you’ve had trauma, you’re alone, and you don’t feel a connection, you’re more likely to be re-experiencing your trauma.
Finally, you have to have choices. You have to be empowered. How many people who have intellectual disabilities have real choices in their lives? Many of them have not chosen where they live. They have not chosen who they live with. They have not chosen their job. Again and again and again they’re told they have a choice, but they know that the reality is that they don’t.
That true power over your life is so important for recovery because how can you look to the future if you feel hopeless? You just end up saying, “Well, nothing’s going to change.” Or, “I’ll have these meetings, but they won’t mean anything.” Or, “I’ll have meetings and everyone talks about my bad behaviors and I have to follow what my behavior plan says…but I’m suffering.”
I went to a conference recently, and they had a talk on supportive decision-making. I think it’s a wonderful concept, and I want to devote myself to finding ways that we can promote supportive decision-making all along. Empowering people has to involve more than a once a year meeting where we ask for their feedback, and the person humors us, knowing that they’re not really going to have that job, or they’re not going to move, or they’re not going to get married. As Michael Smull talks about with person-centered planning, the challenge is to integrate choice into the daily routine. That’s when people can start having hope.
L: Can you talk a bit about specific therapies or approaches that you’ve found helpful.
K: There are pockets of people all around who are figuring out how to modify the therapies and therapeutic interventions that we’re using for trauma affected people in the general population. It’s not difficult to do. The key is to make things more concrete but not childlike. Because these adults are not children and they need to be worked with as adults.
I developed a series of workbooks, for example, that modify straight DBT (Dialectical behavior therapy) and CBT (Cognitive behavioral therapy) to help people with intellectual disabilities develop a positive sense of self. Julie Brown modified DBT and created a mindfulness approach, and she’s had some great results.
I just finished being a part of a very exciting study with a dissertation student, Dr. Lynn Buhler, where we worked with eight individuals at the Arc of Baltimore who had had severe trauma, documented PTSD, a history of horrible behavior problems, and sleep issues, They were given a year with EMDR, which is a type of trauma therapy developed by Francine Shapiro, and in every single one of them the symptoms of Post-traumatic Stress Disorder were gone. Behavioral issues completely changed. It was amazing. It’s just a total change in all eight. And hopefully Lynn will be publishing soon, because the dissertation was just brilliant.
Just in general, at the ARC of Baltimore, we’ve found that it’s immensely important to train staff in active listening skills and in trauma-informed care. The more that’s integrated into their routine, the better they understand the mechanisms of why people are the way they are, and the easier it is for them to give them people space and give them support. We’ve found great results with that. Because when staff is more sensitive, more aware, and more supportive, folks calm down.
L: It sounds like you’ve been involved in some really amazing changes in the places where you’ve been directly involved, but what about the rest of the field? Where do you see changes taking place? What still needs to happen?
K: We’re not yet where I’d like us to be in terms of recognizing how many issues that are manifesting behaviorally are in fact symptoms of trauma, but the good news is that we are evolving!
I’ve seen so much progress in community therapists being more willing to work with our folks. So that’s one thing and it’s wonderful. It’s not everywhere, but it’s happening more and more. And it’s being acknowledged among the psychologists in this field that our folks do benefit from therapy. So that’s great. I see a movement from old school behavioral interventions that involved punishment and restrictions to more of positive behavioral supports. That’s a positive move being made as well.
One thing I’d really like to see is more and better research both on the behavioral effects of trauma, and on the efficacy of trauma informed care. Let’s show once and for all that people are not choosing to be bad. They’re not manipulative. They’re not showing off. They’re not seeking attention. They’re letting us know what they’ve been through in their life. And they really do heal when they feel safe, connected, and empowered.
We also need to train staff differently. We’re so good at training them on blood-borne pathogens and administration, but I think it should be required in every state that staff is trained in active listening skills. We think people know how to listen, but we don’t! I go around talking about this and I don’t even listen to my husband half the time! To really train people to listen, support and validate would be transformative. We need to train people in supportive decision-making.
It sounds fluffy, but when you train them concretely you see behaviors disappear. It’s amazing how many folks have improved once we’ve trained their staff to work differently. So I really believe we have to look at some of these softer techniques in training staff. And the more that we can move away from a hard power, restraint-type of model and switch to a more soft-power, caring, coaching and supportive model the more the whole field is going to change for the better.