21 Million Cases of TBI, Not 3.5 Million?

Why are there so many cases of undiagnosed TBI? Learn more.

So if you begin to look at the numbers of people with TBI, theoretically they are somewhere--if you accept the CDC numbers--somewhere between 3 and 5 million as a reasonable estimate. And that's usually--those numbers are based on visits to an emergency room. What we know is that that is a significant under-count. It's an under-count because it doesn't include those folks who go to a physician. It doesn't account for those who are injured on a ball field. It doesn't account for kids who don't tell anybody that they fell off their bike and were lying on the ground for a significant period of time before anybody noticed them or before they got up and walked home. It doesn't talk about folks who have been assaulted. Indeed, in studies--published studies--that have been done, there is one study that was published in 2006. They did a Catchment Area Study in New Haven of about 5800 people, and there was a question in the study: Have you ever experienced a blow to the head in which you lost consciousness? About--the number was somewhere a little above 7 percent. In studies that we do of people walking into our offices where we have ads in local newspapers looking for "normals" as comparisons for our folks with TBI, we've also run into that 7 percent twice. In a study we did in two regular schools in New York City, one was a special school for bright kids in science and math, and the other was a "normal" New York City junior high school or-- I don't think there is such a thing as a normal New York City junior high school. We screened somewhere around 200 kids, and then the ones that came out positive we did neuropsych testing on; we had two neuropsychologists blindly look at the scores on these evaluations and then come to agreement whether or not these kids were impaired or not and if their impairments were consistent with a TBI. We found that the number was 9 percent. And this is in normal schools, kids just there. So, if you extrapolate those numbers, there should be somewhere around 21 million folks in this country with a TBI, not 3 to 5 million. So it's a huge, huge number. Indeed, if you look at the numbers, there should be somewhere around 500,000 kids identified in special ed with a TBI. There is somewhere around 20,000 to 25,000. So kids are not being identified. Indeed, about 15 years ago we had a grant from the New York State Department of Education in which we did all the training in the New York City schools, and I had a SWAT team--a group who would then go in, and if a mom or a teacher called in that they "had a kid with a brain injury," we would bring the child in and test them and do what we could do. Each year we probably tested around 175 kids. It struck me--each year. So five different times we replicated that the time between when we finally were referred a child, the interval between the referral and the injury was 5 years. So these kids were sitting in their classrooms for 5 years, not learning, nobody picking that up. Now that, I think, goes on day in and day out all over the place. So the problem is rampant, and the problem gets compounded because schools don't want to identify any more kids with problems, so to speak, because they don't have any money either to identify them or, once that they have identified them, to do anything with them. So you really have a double-edged sword here in terms of who's going to pay for this? At one end, the schools don't want to put the money into identification and, ultimately, treating. At the other end, if you don't do that, then what do you have? You have failure. You have unemployment. You have homelessness. You have psychiatric disturbance. You have criminality, and you have substance abuse. So at some point somebody is paying for this. So you're going to--your early interventions essentially become prevention for failure. And so it seems to me that if you're talking about using tax dollars for something of benefit, this is somewhat of a no-brainer, so to speak.
Posted on BrainLine March 15, 2011.

About the author: Wayne Gordon, PhD

Wayne Gordon, PhD, ABPP/Cn, is the Jack Nash Professor of Rehabilitation Medicine and associate director of the Department of Rehabilitation Medicine at the Mount Sinai School of Medicine. He is a neuropsychologist and the director of the Mount Sinai Brain Injury Research Center.

Dr. Wayne Gordon

Produced by Noel Gunther, Ashley Gilleland, Victoria Tilney McDonough, and Brian King.