Rehabilitation Neuropsychology and Multidisciplinary Care in the Adult Spina Bifida Clinic

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.”

Ted Allaire Barrios, PhD, is assistant professor in the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh School of Medicine, with a secondary appointment in the Department of Counseling and Behavioral Health in the School of Health and Rehabilitation Sciences. He serves as associate training director for the UPMC Lifespan Rehabilitation Neuropsychology Fellowship.

Across settings, Dr. Barrios is focused on addressing the needs of people with disabilities and chronic health conditions. His work occurs at the intersection of brain health, clinical psychology, and rehabilitation medicine. As a clinician-scientist, he is interested in improving how health, independence, and quality of life are evaluated and managed for people with disabilities. To this point, Dr. Barrios is currently leading a study that aims to address the impact of executive dysfunction on these factors among adults with spina bifida.

Dr. Barrios joined the University of Pittsburgh and the UPMC Rehabilitation Institute faculty in August 2024 after completing a postdoctoral fellowship in clinical neuropsychology and rehabilitation psychology at the University of Michigan. His pre- and postdoctoral training focused heavily on addressing the needs of adults with various forms of disability typically sustained via an acquired etiology (e.g., traumatic brain injury, stroke, spinal cord injury). His training followed a scientist-practitioner model, in which equal emphasis was placed on providing evidence-based clinical care and conducting robust clinical research.

Working With a New Patient Population

Coinciding with his arrival at Pitt and UPMC, the UPMC Adult Spina Bifida Clinic was seeking a new primary neuropsychologist. This opportunity aligned with Dr. Barrios’ interests in multidisciplinary care models and creative approaches to improving health outcomes for people with disabilities.

“This was a fantastic way to get involved in a truly collaborative clinic,” Dr. Barrios says. “In the past year, I’ve learned a great deal about the [spina bifida] community. The program that has been created at UPMC for adults with spina bifida is multidisciplinary in every sense and a model for what this kind of program should look like.”

During his first year in the clinic, Dr. Barrios has learned more about how to shift his approach to better capture the experiences of adults with congenital disabilities and chronic health conditions. For example, in his work with people who have sustained traumatic injuries, conversations often begin with a straightforward question: What’s different for you now? What has been more challenging? The question implies a clear before-and-after comparison.

In the UPMC Adult Spina Bifida Clinic, that framework can be ineffective or suboptimal.

“That is to say, for someone who’s lived with spina bifida their entire life, there often is not as clear of a comparison point,” Dr. Barrios says.

This observation led Dr. Barrios to rethink how he structures his conversations in and out of the clinic. Rather than focusing on perceived changes, Dr. Barrios focuses on clarifying what matters to an individual and how consistent their daily activities are with those meaningful areas of life. He then builds on that by exploring what barriers, if any, are getting in the way, and what facilitators are supporting their engagement.

As such, Dr. Barrios’ dynamic with patients focuses heavily on understanding the interaction between an individual and their unique environment, as opposed to focusing solely on one’s “impairment” or “deficits,” as traditionally conceptualized. This framing lends itself to pragmatic problem-solving rather than simply labeling or cataloging one’s challenges. It also acknowledges the many strengths that people with disabilities possess, which are often developed by way of navigating a world not consistently designed with accessibility in mind.

“It’s never my goal to make someone feel like they leave an appointment with more problems than they came in with,” Dr. Barrios says. “Instead, I want to identify areas where we can apply strategies or resources to make life easier, based on what’s important to them.”

Understanding Executive Function Demands

Concerns related to cognitive function (e.g., executive dysfunction) are a recurring topic in the UPMC Adult Spina Bifida Clinic, especially for individuals with more severe forms of the condition like myelomeningocele with hydrocephalus. These challenges can then make independently managing the complexities of life with spina bifida even more complicated.

“Life with spina bifida is inherently demanding,” Dr. Barrios says. “Even average executive function capabilities, as a neuropsychologist might describe them, may be insufficient for someone tasked with managing multiple appointments, medical regimens, staff, and adaptive equipment. The discrepancy between one’s executive function capacity and executive function demand seems useful in understanding how different people respond to unique functional challenges.”

Dr. Barrios also explains that executive dysfunction can take different forms, positioning impulsivity and disinhibition at one end of the spectrum and abulia, a neurologically driven lack of motivation, at the other. Recognizing and naming these distinctions can be useful for both patients and their families, so as to promote a more nuanced understanding of neurobehavioral function and avoid descriptions labeled in negative personality attributes (e.g., lazy).

“Helping people reframe what they are seeing gives us a shared vocabulary and opens the door for the development of more effective management strategies. It can also lead to family members and other close individuals developing a better understanding of their loved one’s experiences.”

Compensatory Strategies and Rehabilitation Focus

As a rehabilitation neuropsychologist, Dr. Barrios approaches every patient encounter with a consistent guiding priority: How can I be most helpful in improving someone’s health, independence, or quality of life? He aims to accomplish these goals by listening for what patients value most and identifying concrete, personalized strategies that promote living consistently with those values.

This approach aligns with acceptance-and-commitment therapy (ACT), which is a type of cognitive behavioral therapy (CBT) that simultaneously emphasizes shifting the relationship people have with their thoughts and feelings and working to increase engagement in meaningful activities. A throughline of ACT, and Dr. Barrios’ work more generally, is to promote psychological flexibility — or the ability to stay present, open, and engaged in meaningful activities even in the face of adversity.

“I want to know what matters most to someone,” Dr. Barrios says. “If we identify barriers to living consistently with those meaningful areas of life, how can we use their strengths to work around it? That’s where compensatory strategies come in. These might include building a consistent routine, using reminders, or breaking down overwhelming tasks into smaller, manageable steps.”

Sometimes it makes sense for a patient to establish care with one or more neurorehabilitation therapists, like an occupational therapist or speech-language pathologist. These providers offer their own unique expertise in addressing challenges related to neurobehavioral or neurocognitive function.

In other words, a strategy that works in theory won’t help a person if it doesn’t fit their environment and routines, so that aspect of the dynamic absolutely must be tailored to the individual. Similarly, it can sometimes take a team-based approach to implement or generalize a skill.

Dr. Barrios also highlights patient strengths early in the conversation.

“I might have only known someone for 15 minutes, but I can usually describe at least some of their strengths. I want to frame our conversation in terms of playing to those strengths to work around areas they may find more challenging.”

The Value of the Multidisciplinary Model

The UPMC Adult Spina Bifida Clinic integrates specialists from multiple disciplines within a single, coordinated care setting. In addition to Brad Dicianno, MD, clinic director, from Physiatry, the team includes a social worker, nurse coordinator, physician assistant, registered dietitian, personal trainer, and peer coordinators. Dr. Barrios views this collaborative model as one of the program’s core strengths.

“This clinic is a classic example of a whole that is greater than the sum of its parts. I think our patients realize that, too, and that in and of itself carries tremendous value,” Dr. Barrios says.

These benefits extend beyond individual patient encounters. Real-time case discussions often produce insights that apply to future cases.

“If I talk through executive dysfunction strategies with the team for one patient, that knowledge carries over the next time we see someone with similar challenges,” Dr. Barrios says. “It works both ways. I’ve learned a lot from our physician team and nurse coordinator about common medical complications and from our social worker about transportation barriers, and I can integrate that into my own approach.”

Dr. Barrios’ appreciation of the UPMC Adult Spina Bifida Clinic model is reinforced by prior experiences in other multidisciplinary settings.

“The concept works,” Dr. Barrios says. “It’s efficient, it’s collaborative, and it allows for a level of patient-centered care that is hard to achieve in isolated specialty visits.”

Challenges in Adult Spina Bifida Care

One of the complexities of working with adults with spina bifida is recognizing that not every clinical issue is related to the primary diagnosis.

“People with spina bifida can develop cancer, Alzheimer’s disease, or depression, just like anyone else,” Dr. Barrios says. “Sometimes we have to remember Hickam’s dictum: ‘A patient can have as many diseases as they damn well please.’ It’s easy to assume that a concern raised by a patient is related to spina bifida, but we have to consider other possibilities. It could be something unrelated, or it could be a reversible issue, like a urinary tract infection causing delirium. We can’t afford to overlook either scenario.”

These diagnostic challenges are compounded by existing and long-standing gaps in adult care guidelines. Dr. Barrios points out that the pediatric spina bifida guidelines are highly detailed, breaking down recommendations by age in months and years.

“As you scroll through, it’s incredibly precise, until you get to adulthood. Then it just says ‘18+.’ That’s the majority of a person’s life condensed into a single bullet point,” Dr. Barrios says. “I think everyone realizes that’s insufficient, and I think over time that will change.”

This lack of granularity limits the ability to anticipate and address changes that occur throughout adulthood, particularly with respect to cognitive aging, independent living, and shifting social and interpersonal dynamics. More specific guidelines are particularly useful for providers working with adults with spina bifida in nonspecialty clinical settings.

Future Work

Dr. Barrios sees many unanswered questions involving the needs of adults with spina bifida that have direct implications for clinical care. This patient population remains quite understudied, despite spina bifida being one of the most common congenital causes of disability and most individuals alive today with spina bifida being adults.

“It is frustrating that so many questions remain unanswered,” Dr. Barrios says. “However, it is also exciting that there remains so much meaningful work that needs to be done and that the foundation is in place for that work to be done here at UPMC and the University of Pittsburgh.”

Dr. Barrios is interested in cognitive aging among adults with spina bifida and identifying the factors that set the stage for “living well,” or thriving, in the face of complex medical needs. His earlier work on flourishing after spinal cord injury found that three factors — strong social support, a resilient personality, and robust executive function — were common among adults who flourished in the years after spinal cord injury. He suspects similar factors may hold true for adults with spina bifida.

“The question is: What are the key ingredients to living well and living long with spina bifida, and how do we make sure people have access to those ingredients?” Dr. Barrios says. “That’s where my work is headed, developing and refining interventions that improve both independence and quality of life for people with disabilities, including adults with spina bifida.”

One such project is supported by a recent FISA Foundation grant to help adults with spina bifida through a structured Health Care Navigator Program, for which Dr. Barrios is the principal investigator. The program is designed to “empower adults with SB to navigate complex health care systems, advocate for their rights, and develop essential self-management skills.”

“We’re very excited about this project and what it could mean for our patients,” Dr. Barrios says. “It will leverage the staff and skills that we have in place already at the UPMC Adult Spina Bifida Program to test a new approach and see what it means in terms of patient health and quality of life.”

Read about Dr. Barrios and colleagues’ FISA Foundation grant project in a separate article.