Introduction and Overview
I am very excited about today's topic, curriculum-based assessment and interventions for students with brain injury. It is a passion of mine, from both a clinical and a research perspective. Before we begin, I would like to clarify some terms and concepts, to make sure we're all up to speed as we go forward with this presentation, specifically with regard to acquired brain injury in children.
Terms and Definitions
When we think about brain injuries, many of us envision traumatic brain injuries (TBI) that occur in events like car accidents, or in cases of assault. Another type of brain injury, considered to be a milder form of injury, is a concussion. Recently, there has been more news coverage on and awareness of concussions, specifically sports-related concussions. In our webinar today, we are not only referring to trauma related brain injury, but also injury that can be attributed to non-traumatic brain events. Together, both traumatic and non-traumatic causes comprise this category called acquired brain injury (ABI).
When we think about non-traumatic brain injury, we are referring to events that don't require the brain to be bumped or jostled. For example, events like anoxia can cause injury, when your brain is deprived of oxygen (e.g., near-drownings or asphyxiation injuries). Non-traumatic brain injury can also be caused by infections (e.g., meningitis or encephalitis), or brain tumors (either the presence of a tumor, or the resection of a tumor). Strokes can be another cause of acquired brain injury, as well as metabolic and chemical injuries that result from things like chronic drug abuse and other types of ingestion injuries.
Pediatric TBI: Facts and Statistics
Most of the data that we have on brain injury is related to trauma, because traumatic events are easier to track than non-traumatic injuries. According to the CDC, two of the three age groups that are at the highest risk for traumatic brain injury include youths who we might see in our schools: children ages zero to four (before they enter school) and adolescents ages 15-19. Additionally, every year in the United States, of the nearly two million people who sustain a traumatic brain injury, approximately 700,000 of those are school-aged children (Faul et al., 2010).
What happens to these students? A majority of them are going to enter our public school system, and many of them will require some type of special education services. Some conservative estimates indicate that in the United States, we have approximately 2.5 million students with TBI enrolled in our educational system each year. This is likely a low estimate for traumatic brain injury, but we must remember that this figure does not include the non-traumatic brain injuries that we discussed a few moments earlier. Some studies suggest that 98 to 99 percent of children with TBI are not appropriately identified within the U.S. education system. When we take the total number of children with traumatic brain injuries, and compare that to the number of children in schools who are classified as traumatic brain-injured, there is a huge discrepancy. Not all students who have a traumatic brain injury are going to require services. However, it is likely that more than two percent of those students will require some type of support. Those are the children we will be talking about today.
Identifying Brain Injury
The first question we need to try to understand is why we have this huge discrepancy. We know children are being injured, yet we're not identifying them appropriately in the school systems. What are the reasons for this?
First of all, standardized language and cognitive testing often fails to show that these students have deficits. One possible explanation is that our developmental language tests are geared to look at the form of language. For example, are students using grammar and syntax and do they have appropriate vocabulary? Those are the skills that are typically maintained after an injury. Furthermore, when our students are undergoing cognitive testing, they're often sitting in a very quiet environment, where they're one-on-one with the examiner. Any difficulties they may have with attention and executive function don't appear, because the testing environment is free of distractions, helping to minimize their difficulties. As such, we have students who may struggle in an everyday activity, but don't struggle when we give them standardized tests of language or cognition. Be that as it may, we are still required to administer standardized tests, as set forth by state guidelines. However, Dr. Nickola Nelson points out that our laws also indicate that curriculum-based assessment and intervention need to be taken into consideration. Unfortunately, the predominant focus tends to be on standardized testing. I propose that if we could shift our focus, we could have potential ripple effects, benefiting not only children with acquired brain injury, but children with attention difficulties, or specific learning disabilities.
Additionally, we have students who may have sustained a severe injury, but they get to the point where they seem very functional. Unless you really know what you're looking for, they may appear a bit different or odd, but they're able to carry on a conversation with people, and they don't necessarily appear as if they've had a significant injury. Unfortunately, what we know about these students is that their deficits will often increase later in life, well beyond the initial injury.
Injury Sustained Before Entering School
What about children that are injured before they enter school? Research has shown that the most vulnerable skills are those that are not yet developed, or that are developing at the time of injury. Those skills tend to be more compromised than the skills that are already fully developed. This is why we see preschool-age children that can leave a rehabilitation unit testing within average limits on an early language test, for example. They have regained their ability to put simple sentences together and use appropriate vocabulary.
Sandy Chapman coined the term "neurocognitive stall," which astutely describes what we see in these children as they continue to progress after their injury. A neurocognitive stall is the phenomenon where children will catch back up to where they were prior to injury, but then they will plateau in their development of later emerging skills, where they aren't able to keep pace with the learning that their peers are experiencing, or the changes that they are going through. Then, they begin to lag behind their peers in these later-developing skills.
Outcomes in Pediatric Brain Injury
Frequently, in children with brain injury, we see delayed developmental consequences. Brain injury jeopardizes the ability for children to master new skills. Learning new things after injury is much tougher than regaining the skills mastered before the injury occurred.
There are several areas of the brain that are slow to mature, and the frontal lobe is a prime example. The human frontal lobe continues developing until the early 20s, and is vulnerable to the effects of a closed traumatic brain injury. The frontal lobe is responsible for many of the skills that are required in complex, academic school-type tasks.
After brain injury, new learning is more difficult. This poses a critical challenge as we're trying to get children through school, and as they're building upon previously-learned skills and information. Children with ABI may also exhibit increasing emotional and behavioral problems, which can lead to social isolation.
Unfortunately, we haven't figured out the best way that we can care for these individuals. This is partially due to poorly conceived systems of care, rehabilitative management and education. There are challenges with insurance and how families are able to pay for care. We need to get individuals back into their home environments to be with their families, but we encounter many challenges as we're trying to transition children. We don't have a great system to transition them and make sure that we're including families and schools and hospitals all in the same process. We have ideas for what we could be doing in an ideal world, but there are many barriers for families, hospital personnel, and also school personnel along the way.
School = Rehab
Over time, schools have become the "major agent of ongoing rehab" (Shaw, 2014). When I started in inpatient rehab many years ago, our children were able to stay on the unit for months at a time, and we didn't face many challenges with insurers like they do in the adult world. That has been changing dramatically in the last few years. Now, we see insurance companies pushing to get children out as quickly as possible. As a result, we're not able to make as much progress in inpatient rehab and prepare families as well as we were able to in the past. That burden is falling on individuals who work in the schools, because that's where these children are going after they leave the hospital. Recognizing the possible difficulties that students may face when they get back to school is a huge factor in determining the long-term outcomes for these children. If we can mitigate these difficulties, we have a chance to make a significant impact on the long-term outcome of these children.
How do we optimize school re-integration following brain injury? First, we have to understand that the number of children admitted and discharged from an inpatient rehab facility following brain injury is very small (only 1-2%, in cases of TBI). Many of those children only visit the emergency department, or they may have a very short hospital stay. When they go home, all of that care transitions immediately to the family, who is hopefully also working with the school. This is a very critical phase for the children, because so much change has happened. They've gone from being significantly injured, requiring a hospital visit or admission, and hopefully are close to having most of their prior skills regained at the time of discharge. There is a strong need for coordination and advanced preparation between hospital, family and school, to transition those children back to school. Communication exchanges should include information about the child's injury, recovery, expectations for school, strengths and weaknesses. How did the injury affect the child's prior developmental skills? What are the expectations of the family and of the school, as that child reenters? After the injury, what are the strengths and weaknesses of the child?
Difficulties for Students with ABI
One of the typical issues that we see in students with acquired brain injury is that they have difficulty understanding and following complex verbal and written language and directions. For example, they have a hard time understanding the complex language that is found in a textbook, or in upper grade lectures. Also, students with acquired brain injury struggle to incorporate new vocabulary into vocabulary that's previously been learned; they may not understand how these new vocabulary words fit in with their other corpus of vocabulary. They struggle with new learning. Short-term and working memory is a particular challenge for children with ABI. They have difficulty with more complex attentional tasks. They may be able to sustain their attention to a simple task, but when you add in distractions (e.g., a noisy hallway, their phone in their pocket, other students around them doing things that are off-task), attentional tasks become very challenging. They also struggle with frontal lobe functions of organization, initiation, and inhibiting activities or behaviors that they shouldn't be participating in. All of these skills are critical for learning in an academic environment. These are things that students are expected to do all of the time to benefit from the academic environment. Unfortunately, a common side effect of struggling academically is disengagement, behavior problems, and social isolation. Similar to students with learning disabilities, if a student with ABI sits in a lecture and can't understand it, they may act out.
Education Intervention Must Be Proactive
Prior to IDEA (Individuals with Disabilities Education Act) designating TBI as an official educational disability, these students were not doing well, and they were failing. If we can help to prevent academic and social failures, hopefully we can lessen some of the behavioral challenges that these students face. If they can feel more successful in school, then perhaps we can circumvent that downward spiral of behavioral challenges and social isolation that can result from those feelings of failure. We can't choose a "wait and see" path. We can't wait until they're failing a class, or they've been expelled three times. We need to act ahead of time to try to circumvent these issues from occurring. It is absolutely essential to make sure that we have a good communication system between all entities involved in the child's life (e.g., parents, schools, hospitals, inpatient rehab staff) in order to benefit these students in the most optimal manner.
How Can We Help These Students?
It has been proposed that incorporating curriculum-based assessments and interventions is the best way to pull together all of the components that would most optimally help these students succeed in the classroom. In order to do that, we all need to understand that good clinical and educational decisions aren't made simply on the basis of a diagnosis. Simply knowing that a student has a TBI is not a sufficient way to classify them and give them this pre-established set of educational accommodations. Every brain injury is unique and is going to affect every student differently, based on a wide array of factors. We need to look at each of these children individually. Knowing that they have a brain injury is step one. Figuring out how that injury fits into the puzzle of this particular student is the more challenging piece of our assessment and intervention. To do that, we need to use student-specific hypothesis testing. In other words, we assess each individual student to figure out what works for them and what does not work. Then, we make recommendations or intervene to address those things that aren't working.
In 1989, Dr. Nickola Nelson defined curriculum-based assessment and intervention as the "use of curriculum contexts and content for measuring a student's language intervention needs and progress." In addition to language, we are also measuring a student's cognitive and pragmatic intervention needs and progress. With each particular student's abilities, we need to evaluate how all of these components interact in the classroom. Nelson goes on to say that we "may extend the assessment beyond the identification of a student as communication impaired by including activities/skills that may assess the acquisition of effective oral and written communication abilities" (i.e., speaking, listening, reading and writing).
The first step in curriculum-based assessment is to ascertain whether or not the student possesses the language or the cognitive skills to learn the curriculum. Once that determination is made, there are three distinct tasks involved with curriculum-based assessment:
- Interviewing key players (teacher, student, parents)
- Task analysis for specific areas of need
- Use of Dynamic Assessment
Interview Key Players
One of the first places we can start is to interview the key players (e.g., teachers, intervention specialists, parents, and the students themselves). We can ask questions to figure out the greatest areas of concern. For example, what does the student struggle with the most? What has the teacher or the family observed? Also, we can determine goals for the student. Do the goals of the parents match the goals of the student? Do they match the goals of the teacher? Are they goals that we can agree upon so that we are all working toward the same goals? If someone has unrealistic goals, maybe we can work together to establish more realistic goals that are in line with the curriculum standards, and also the abilities of the student.