On Neurorehabilitation: A Conversation with Mark Ylvisaker, PhD

Mark Ylvisaker, PhD has been a leader in the field of neurorehabilitation for decades. He has written over one hundred articles, published six books, and given more than six hundred presentations. Dr. Ylvisaker has also consulted to rehabilitation programs in 13 countries over five continents. His doctorate is in Communication Sciences and Disorders from the University of Pittsburg.

On July 28, 2007 he spoke to Chuck Durgin from the Kennedy Krieger Institute (Baltimore, Maryland) and Brian Dillon (student at the University of Rochester), at his home in Upstate New York.

Mark, you initially established yourself as a professor of philosophy and eventually changed your career path to become a clinician. Are you glad that you pursued philosophy early on?

Well I think so. People sometimes ask me, you know these two lives that I’ve led, do they affect each other, and did my background in philosophy have any positive impact. I’m not sure entirely but I think so. A background like that always serves one well, if only in terms of broadening one’s perspective and thought patterns. And I think that my respect for careful hypothesis testing in rehabilitation may have come from my background in philosophy of scienceI don’t regret for a minute the time I spent studying and teaching philosophy.

What were your most powerful or inspirational formative experiences that led you into the field of neurorehabilitation?

My first job was in a rehabilitation hospital, but unlike most it originally existed as a place just for children and adolescents. My first patient with acquired brain injury was an adolescent who had tried to commit suicide (gunshot wound). He was a genius…a really bright but troubled kid. He came out with the most intriguing profile of strengths and limitations that you could possibly imagine. It just amazed me in terms of its intellectual intrigue, as well as the personal losses. The tragedy was enormous of course for the family.

So this initial experience made me extremely interested in the field. You can’t go to sleep--you know that--you can’t go to sleep when you are working with people who are in the midst of a huge tragedy for them and for their families and their loved ones. It’s endless, endless territory for exploration on the part of people who are trying to help. There are just so many mysteries.

I am curious to know if there are any theorists or clinicians, or any publications that significantly influenced your knowledge or work in the field?

That’s actually easy. The one person who had the most profound, and continues to have the most profound influence on my thinking and on my practice is Lev Vygotsky. In my head he was one of the great geniuses of the 20th century, an incredibly bright, gifted, well educated person whose thinking about development--cognitive development, social development, self- regulatory development – had a profound effect on developmental psychology. I think he still is as accurate as anybody. He died at around age 35, some 70 years ago. He was really very extraordinary. Vygotsky’s work fits with my thinking and it has served as inspiration for me ever since.

What is it about his work that really stands out relative to working with people with brain injury?

There are many components. For one thing he is an integrative thinker. He’s a person who has articulated theoretical and empirical reasons for resisting the distinction between cognition and emotion and affect. He also resisted a sharp distinction between language and cognition. He fully recognized the interrelationships among domains of human functioning. The role that he described for language and interactions in the process of cognitive development, and not just cognitive, but cognitive and self- regulatory development, struck me as accurate. He also highlighted the critical relations between context--especially activity context--and cognition. This insight is only now being more fully appreciated in rehabilitation.

Looking back on your learning curve, moving from being a young clinician to a master clinician if you will, what would you say were your biggest mistakes or miscalculations early on?

I’m not sure I’m going to buy that master clinician thing. Well, partly, I just made the mistakes that any young clinician could make. I had some early experiences that were very important for me that told me that I shouldn’t, that I can’t be ignorant. I’m not going to be doing a good job if I am ignorant. I really needed to educate myself thoroughly across disciplines or I could miss a lot.

Beyond that, I gained sensitivity to the limitations of formal testing. As you well know you can sit somebody down in an office and get them engaged in little tasks that don’t require much self-regulation, organization, retention, insight, or initiation. They may not require much of anything that is typically problematic with people with brain injury. So they do well and you send them off saying they don’t have a serious problem. Then you find out in the real world they are falling apart. They are having all kinds of difficulties. That was one of the early and very powerful lessons that I learned.

Related to this, I gained sensitivity to the relevance of context in intervention. Focusing on cognitive or self-regulatory issues only in a treatment setting may have no impact on real-world functioning.

Are there any particularly important principals or beliefs that guide you in the practice of neurorehabilitation? Things you carry with you all of the time.

That’s a good question. A big concept for me is what I call “disciplined flexibility,” which sounds a little oxymoronic. In rehabilitation it’s easy to make assumptions. It’s easy to leap from one presenting symptom or another to a conclusion about what’s really underlying the person’s difficulties, or to leap from a report to conclusions. That is a big mistake. One needs to go into every interaction with the required flexibility to explore what might actually be underlying the presenting symptoms. It could be a variety of things. It could be any one of a number of cognitive issues or behavioral issues, social-emotional issues or underlying medical issues. One has to have the flexibility to explore those but also the discipline to explore them in a closely controlled, hypothesis testing experimental manner. That is something I take in with me with all my interactions and I think that it is very important for all professionals.

Since you’ve spent so much time working with children and families I know you realize that they face unbelievable challenges after an injury. What areas do you feel can be potentially overlooked or under appreciated as these individuals move forward after the acute level of care?

One critically important area often overlooked by professionals is the issue of self- regulation. Often teachers in schools and rehabilitation professionals tend to take responsibility for those aspects of functioning that are the most important for people to learn. For example, we identify that persons’ profile of strengths and needs, but we don’t teach them to develop this self-assessment skill. And we take responsibility for setting goals and for planning the strategies to achieve the goals. We take responsibility for helping people to initiate doing things, and we block out things that should be inhibited. We take responsibility for identifying how well they’re doing, monitoring their progress, and evaluating performance. All of this is self-regulation and we’re taking responsibility for that. We’re getting better and better but the child or adult with the disability is not being engaged in the self-regulatory skills they need to be learning.

In addition, with kids, one of the biggest problems that they face is the whole issue of friendship. So many kids that I’ve worked with, two years or three years or five years down the road will say to me, “The most difficult thing for me was that I lost my friends.” Or that, “I don’t have any friends.” Or, “I’ve got one friend and I used to have ten good friends.” That’s hard to deal with but there are things that we can try to do to develop friendships. For example, access to extracurricular activities in school can often provide opportunities to find a social network.

I know that you’ve visited many exceptional programs in your travels. Will you describe one of the most inspiring examples of high quality neurorehabilitation practice that you have observed?

I’ve witnessed a lot around the world. I’ve seen really good people, really good teams. I guess one of the most inspiring experiences that I had was in Brazil. They have a very good system of rehabilitation hospitals. One of the things that they take very seriously is making sure that everyday people, in the case of kids, their families’s especially, are as knowledgeable and competent, empowered and supported, as they can possibly be. Because it’s every hour of the day that really should be thought of as rehabilitation, not being in this office at this time and this gym at this time and so forth, but looking at all waking and sleeping hours (because sleep is important). It’s 24 hours a day that is really rehabilitation time. Plus it’s a lifelong issue and challenge for those directly impacted.

What do you think are the most encouraging trends in the field presently?

From my perspective the most encouraging trends are associated with this increased respect for the real world. It’s partly related to reductions in money available for rehabilitation. In the old days in this country there was a lot of money for services, and people tended not to think adequately about paving the long road and making sure that family members, unpaid everyday people, or minimally paid people playing important roles over the long run, were part of the team.

Now I think around the world professionals are increasingly forced to look outside of the rehabilitation team per se. Where are the supports? Who’s going to take over? Who is going to be able to manage the long run of rehabilitation? Who will be there over the long haul? We need to get to them. We need to spend half of our effort making sure that those people know what to do. We have to pass the baton appropriately.

Early rehabilitation approaches pulled from many different disciplines and fields of study (and still do to some extent). Are there any contributions that you feel neurorehabilitation is now giving back to the general field of human services and persons with other disabilities?

Most generally, the whole neurological, neuro-cognitive perspective has informed other fields of study, such as developmental disabilities and autism. Within the field of brain injury rehabilitation there’s been a major focus on frontal lobe injury and impairments of executive functions and what can be done to help. That whole perspective has been brought into working with other groups as well, the whole self-regulatory perspective. I think that’s been helpful. That executive function, self-regulatory perspective has been welcomed wherever I’ve consulted with people who work mainly with folks with learning disabilities, autism, ADHD, or challenges of that nature.

If new staff needed two or three critical skills or beliefs about the process of neurorehabilitation, what would they be?

I’m going to take you back to something I said earlier and that is respect for the real world. Respect for real-world assessment, getting real world factors involved in assessments, whatever your professional background is. Respect for the real world in terms of intervention and support, knowing that you have to go well beyond your professional context if you’re to be effective. This is a hugely important skill.

Next, optimism! It’s easy to get discouraged if people don’t make the kind of progress that one would like them to make, people who are slow to recover simply do not make rapid gains. It’s important to pay attention to little pieces of progress which make a difference over the long run.

What are the qualities of leadership that you most admire from staff who are working on the frontline or in the trenches?

There are many people in the field who are very gifted at leading by example and through pulling in people who can help the team, very collegial, while at the same time trying to bring about change. It’s tough to be both collegial and say to members of your team, “Hey, we’ve got to change, We’re not doing things as well as we should be doing.” But there are some people who can pull that off and it’s a great aspect of leadership.

What do you think is the critical difference between a really good team and a truly exceptional rehabilitation team?

I think it goes back again to the collegiality of the exceptional teams where they really are learning from one another and applying the skills that they learn from one another. There isn’t a pecking order, a sense of hierarchy. People are effectively integrated in their approach which is mandated by the fact that so many of the critical needs of the people we serve are not discipline-specific needs. Going back to issues like self-regulation -- that’s not the domain of any one discipline. It cuts across all the disciplines. The issue of identity, the evolving sense of self, it’s not just a counseling issue; it cuts across all the disciplines and contexts. So, when people are more than willing to blur professional boundaries, and respect one another and learn from one another, and address the cross disciplinary issues, that’s an exceptional team.

In rehabilitation we’re constantly analyzing what’s important in the lives of others when helping to put someone’s life back together. This process also forces one to reflect on themselves and how their own life is going. What have you learned from this type of self-reflection professionally and personally?

There’s something that I say a lot in rehabilitation-- “In the absence of meaningful engagement in chosen life activities, all interventions will ultimately fail.”

From that perspective, as a rehabilitation professional, one of the ways I need to think about my job is being a facilitator of the creation of meaning. That is my life, creating meaning everyday. It’s my deal. It’s not as though I’m going to find it, that someday I will discover meaning “out there” or somebody is going to give it me. But a lot of people expect that, and they’re angry or they get frustrated or depressed because nobody has presented meaning to them. Meaning is an ongoing creation; it’s what we do as we get engaged in meaningful activities. That’s become very clear to me in working with people with brain injury. It’s become increasingly clear to me in my own life as well.

Acknowledgements: Our gratitude is extended to Louisa Lombardo, MSW for her exceptional transcription and consultation, and to Mark Ylvisaker for taking time to discuss these important issues.

The complete interview will be made available by contacting Chuck Durgin: 443-923-7835,durgin@kennedykrieger.org. It includes fifteen additional questions as well as expanded commentary on five of the items discussed above.