CBIST Spotlight: Drew Nagele

Drew Nagele, Psy.D., CBIST, CESP, is a neuropsychologist with more than 30 years of experience in the field of brain injury rehabilitation. Dr. Nagele currently serves as a member of the ACBIS Board of Governors, co-chairs the National Collaborative on Children’s Brain Injury, and co-chairs the American Congress of Rehabilitation Medicine’s Pediatric and Adolescent Task Force.

I understand you were the founding president of Brain Injury Association of Pennsylvania (BIAPA). How did you first get involved in BIAPA?

As a neuropsychologist, I have always been aware that the neurorehabilitation services we provide were only accessible by a small portion of the brain injury community who could potentially benefit from them. The need for advocacy to make services and supports available to all has been in my “blood” for much of my career. When a person I knew who had brain injury, an attorney named Barb Dively, came to me and said “Why doesn’t Pennsylvania have a brain injury association?” my response was, let’s start one! And together and with the help of many other like-minded people, we started the BIAPA in 2001. Today, 18 years later, BIAPA is one of the most active State Affiliates, reaching thousands of people each year with our Brain Injury Resource Line, BrainSTEPS School Re-Entry Program, Pre-Enrollment Assistance, Education and Training (targeted), Annual Conference, Brain Safety Fairs (prevention), and NeuroResource Facilitation (corrections populations).

How did you become involved in the National Collaborative on Children’s Brain Injury (NCCBI)? What are some key initiatives that you and your organization are currently working on?

NCCBI grew out of the awareness of educators and medical rehabilitation providers who saw that the best laid plans for children who had brain injury were often not coming to fruition once they returned to school. NCCBI was formed in 2014 to further develop infrastructure and policy to better serve children with brain injury in the schools. Our goals are to identify critical gaps in educational services, to make policy and research recommendations, and to share information, tools, and resources on supports for children with brain injury in school settings. To that end, NCCBI has developed a Community of Practice called “Brain Injury in Youth – Supports for School Success,” which everyone who works with youth with brain injury is encouraged to join (its free!).

Recently, you contributed a chapter on ‘Advocacy in Service Delivery’ in the Cognitive Rehabilitation for Pediatric Neurological Disorders. What are some key points that brain injury professionals and families should consider to improve service delivery for children and adolescents with brain injury?

For children with brain injury, the school and home are the places where cognitive, behavioral, and emotional strategies need to be implemented. Yet few states have school re-entry programs targeted for children with brain injury, and medical rehabilitation services are not readily accessible. CDC is about to conduct evaluability studies on two school re-entry programs, and the results of those studies should inform states on how they can best go about creating effective school re-entry programs. Additionally, parents can access medical rehabilitation services through their health insurance, and NeuroRehabilitation providers need to figure out ways to interact in an on-going way with school professionals. And the most important thing for parents and teachers to know, is that the older the child gets, the more demands may be made on their brain, and so problems can show up years later. It’s important to monitor students’ progress throughout their academic career to be able to catch these problems and deal with them before they become intractable.

For you, why is advocacy important to the field of brain injury?

BIAA estimates that only 5% of people with brain injury have the resources to adequately get their rehabilitation needs met. What happens to the other 95%? There are two major groupings here – people with mild brain injury, who may never seek treatment, or who are treated and released from Emergency Rooms and do not get further treatment. Those who do not recover fully from a mild brain injury may be at risk for life changes that could have been prevented if they had been provided with the right kind of neurorehabilitation at the right time – life changes such as failures at work, or in relationships, drug and alcohol misuse, homelessness, domestic violence, or even incarceration. The second major group are people with mild to moderate brain injury, who may be hospitalized, but whose treatment is truncated too early, and they are discharged to home or to nursing homes with their neurorehabilitation largely incomplete. These folks are also at risk for psychiatric hospitalization and the breakdown of their family systems, which could be prevented with proper advocacy, opening doors to resources to continue the neurorehabilitation process. Advocacy is critical to changing the trajectories of these people’s lives.

You are recognized for your advocacy work with vulnerable populations. Please share how you became involved with advocating for offender populations. Do you have a unique experience working with prison inmates?

My work with offenders started over 20 years ago when I was first asked to evaluate death row inmates for the presence of brain damage, which can be a mitigating factor in their ultimate sentencing. I was never really concerned about my safety while doing this work, as the prison always had 2 guards watching us through a window behind a locked door. I remember one time I was working deep within a maximum security prison giving an inmate a neuropsychological examination, when suddenly, the power to the prison went out, and we found ourselves sitting in a pitch dark room together. We could hear the guards scrambling outside to try to find the key to open the locked door, but it was so dark, they couldn’t find it right away. After a couple minutes of awkward silence, the prisoner said to me “don’t worry, this happens all the time here” (referring to the electrical outage). I was so impressed by his ability to perceive how this could be a frightening situation for me, and by his attempt to put me at ease. This experience reinforced my belief in the innate goodness found in most people, and drove my intellectual curiosity to further understand how some people with brain injury end up in the justice system.

As a CBIST and ACBIS Board Member, how can CBISs and CBISTs best advocate for persons with brain injury and their families?

I never had the chance to serve in the military due to my own physical disability, but I have always regarded the advocacy work that I have done as my way of giving back to my country through public service. The best place to get started is with your state brain injury affiliate, who will welcome your talents and skills to work on any variety of projects, committees, boards, legislation, or programs that will benefit people who have experienced brain injury and their families. If your state affiliate is not that active, you can help them become more active through your volunteerism. Remember that in Pennsylvania 18 years ago, we started with “nothing” and today have a viable state affiliate with a working Board, 10 paid Staff and dozens of volunteers, and it’s due to many CBISs stepping forward and going beyond their workday obligations. I firmly believe that providing CBIS prep courses/exams and Brain Injury Fundamentals courses/quiz is a great opportunity for state affiliates to interact with, and raise the bar for, the professional communities involved with the people with brain injury who we serve.