BrainSTARS: Weaving a safety net
for children and adolescents who have
Acquired Brain Injuries
Jeanne E. Dise-Lewis, Ph.D.
Professor
University of Colorado School of Medicine
Director, Psychology Programs in Rehabilitation Medicine
Children’s Hospital Colorado
Jeanne.dise-lewis@childrenscolorado.org
Vilans Medical Education
June 7, 2012
Origins of BrainSTARS Manual
 Team-based neuropsychological evaluations of
children seen in Physical Medicine &
Rehabilitation outpatient clinic
– 10 years of work together as multidisciplinary team;
several hundred neuropsychological assessments
– 85% requests for evaluation were for children who had
had previous moderate-severe ABI– common themes
and repetitive information
– About 100 requests/year for consultation from parents
and school personnel about pediatric ABI sequelae
 Critical incidents in lives of children who had had
pediatric ABI many years earlier
– suicide attempt, incarceration, school failure
– needed to offer more than one point in time evaluation
BrainSTARS Manual
Empirically developed and field-tested based on 50
team-based neuropsychological assessments.
Intended audience: the normal adults in a child’s world.
Teaches them to understand how a child’s brain injury
causes cognitive changes which in turn affect many
areas of development.
Teaches them to identify behavior and learning
problems clearly.
Connects these problems (symptoms) to underlying
cognitive difficulties.
Guides effective accommodations and interventions.
What is BrainSTARS in its
essence?
 Parent Pediatric manual for parents of children
with moderate-severe ABI
 Holistic, integrated understanding of
moderate-severe Pediatric Acquired Brain
Injury
– What happens after brain injury in childhood or
adolescence?
– Interaction effects on development
– What child guidance/teaching strategies are
effective?
Intended use: BrainSTARS
Manual
 A self-paced, stand-alone education about moderate-
severe ABI for “regular people” to use in normal
environments.
 11th grade reading level, tabs, spiral binding, lots of white
space, professional editing, multiple stopping points
within short chapters.
 Use like a cookbook– Neurodevelopmental clusters and
Index.
 Our hope: People would be able to understand their child
and modify their expectations/features of the environment
so that child could be successful in everyday settings in
which all children grow, learn and develop.
Origins of BrainSTARS
Consultation Model
 Continued requests from parents and/or school
personnel for consultation despite having had one
education session and manual.
 Manual still in shrink-wrap/ in Special Education
office or library.
 Most people were in need of basic orientation to
using manual, walking through the education
provided, and guidance to individualize the
material for a specific child.
 “The Manual is a heavy piece of work”
– Eric Hermans
Mild TBI (Concussion) vs.
Moderate-Severe TBI
 Two different medical syndromes/ two
different populations.
 Require very different types of education,
approaches, and expectations.
 BrainSTARS is for Moderate-Severe TBI or
ABI.
Mild TBI: Concussion in
children/adolescents
 Brain should recover to full pre-concussion capacity in 3
months.
 There is an initial impact on neurocognitive abilities,
which recover to baseline levels in 4-6 weeks for most
children.
 There also is an impact on general physical and behavioral
symptoms.
 It is important to prevent a second concussion before
recovery from the first concussion– especially in <age 20.
 “Cognitive rest” may play a part in rate and completeness
of recovery.
 Multiple concussions over a lifetime appear to have
significant cumulative detrimental effects
– child vs adult concussion not studied
Treatment for Pediatric Concussion
 Provide family and child with good educational
materials.
– emergency information
– education about expected symptoms and usual course of recovery
 Stay home from school/work/social activities for 2 days.
 Keep your head out of traffic for awhile (at least 8 days).
 Develop a school-based plan of accommodations
providing a safety net for the student.
– Monitoring
– Collaboration among school, family, medical personnel
– Initiation of school-based accommodations for cognitive rest
Kirkwood et al., 2007; Dise-Lewis 2011
Moderate-Severe Pediatric ABI
 Directly alters brain development, which in turn
affects:
– cognitive development
– psychological and emotional development
– social development
– school success
(Chapman, 2007)
Overly-documented Outcomes of
Moderate-Severe PTBI
 Reduced cognitive abilities: significant decrease in
Wechsler IQ scores
 Performance, or Non-verbal reasoning, IQ more
affected than Verbal IQ
 Reduced Executive Control (Executive Functions)
and…
…
 …a whole host of psychiatric diagnoses:
ADD, ADHD, ODD, CD, I/EPD, Bipolar
D, etc.D
 Misidentification in school as ADD/ADHD
or Significant Identifiable Emotional/
Behavioral Disorder deepens problem
 70 out of 70 consecutive referrals of PABI for
neuropsychological evaluation had IEPs/504
Plans but only 4 had ABI/TBI classification
Commonly-documented Outcomes of
Moderate-Severe PTBI: Effects on behavior
 Child is unable to identify the true (underlying
neurodevelopmental) source of his problem.
 Child will “act out” confusion and cognitive problems
behaviorally.
 Problems are worst at transitions (change of class,
elementary to middle school) and less structured
times/settings (lunch room, playground, home vs.
school).
 Variability in presentation leads to moral/motivational
hypotheses: “stubborn, unmotivated, bull-headed” as
well as:
TBI Cycle
BRAIN
INJURY
Neurodevelopmental
Deficits
Metacognitive
Weaknesses
Attention Processing Speed
Organization
Self-Regulation
Executive Functions
Specific Learning
Disabilities
Reading
New Learning
Note-taking
Expressive Language
Social Skills
Test-taking
Problem Solving Long-Range Projects
Behavior Problems
Has Temper Tantrums Poor Frustration Tolerance
Messy Handwriting Doesn’t Follow Directions Looks “Blank”
Fights With Others
Fails Tests
Can’t Keep Up With Peers
Important Educational Points:
Moderate-Severe PTBI
 Initial injury ripples out to cause global developmental deficits
because important adults do not understand TBI phenomenon.
 Behavior problems result from poor appreciation of cognitive
deficiencies and their impact on everyday performance, thus
widening the Individual <>Environment disparity.
 Consequences-based methods are largely ineffective in
teaching/changing behavior of students who have had PABI. Focus
needs to shift to Antecedents in A-B-C Model.
 The age at which the child sustained the brain injury is key to
understanding what neurocognitive deficits likely underlie
behavior problems.
ABI and Developmental Stages
 Cognitive, personal-emotional, and social abilities
emerge developmentally
 Abilities developed at one stage of life form the
foundation for more complex abilities
 Capacities in process of development, and those not
yet developed, are most vulnerable to brain injury
 The earlier the injury, the more pervasive the impact
on thinking, emotion regulation and behavior
• Abilities that are
just developing, or
have not yet
emerged, are the
most sensitive and
most likely to be
disrupted.
• These areas are
likely to be the
Achilles heel for a
child with an
acquired brain
injury, even after he
grows up.
Neurodevelopmental Ability
A Brain-based skill or competency that
Has an developmental sequence of skill
acquisition
Piaget, Erikson, Kohlberg
Developmental Pyramid:
Language
16-19: written language
12-16: reading comprehension
6 - 12: reading decoding
3 -6: expressive language
0 - 3: receptive language
Maturation of Temporal Region
Slides courtesy of Ron Savage Ed.D.
(Savage, 1999)
Developmental Pyramid:
Executive Functions
16-19: reasoning, judgment
12-16: organization, working memory,
self and task monitoring
6 - 12: attention, initiation, planning
3 -6: mental flexibility, emotion regulation
0 - 3: cause/effect relationships, self-regulation
The Diagnosis/Classification
does Matter
 Typical discipline, parenting, educational interventions,
child guidance strategies are based on applying
consequences (positive or negative) to behavior.
 Behavior development plans are based on applying
consequences to behavior.
 These work for typically developing children and for
children with psychiatric diagnoses.
 These are almost always ineffective for children or
adolescents who have had TBI
 a primary executive function diagnosis (consider Autism)
Effective TBI Intervention
 Educate school personnel and family.
 Keep child functioning in everyday settings in which
his/her peers are learning, growing, and developing.
 Identify primary or underlying neurodevelopmental
deficits that are tanking the child’s performance.
– Especially MPS, executive functions, reading
 Remediate/ accommodate these deficits.
 Focus academic program on strengths.
 Identify and teach age appropriate play/ peer skills.
 Nurture hobbies and interests through which friendships
can develop.
Know Two Developmental Stages
 Child’s stage of
development when
TBI happened
 The What? of
accommodations—
– Likely Achilles’ Heel
– Likely weaknesses
 The How? of
 Child’s stage of
development now
accommodations—
– The social milieu
– The everyday
environment
– The specific skills
– The materials
– The personnel
The ABCs of Successful
Behavior and Learning
Antecedents
– hold the key to developing appropriate
behavior for the student with BI
Behavior
– specify clearly/ link with underlying
neurodevelopmental deficits
Consequences
– consequences-based approaches are
ineffective with children who have TBI
Antecedents Set the Stage
 Physical Environment
 Instructions and Directions
 Visual Cues
 Learning Materials
 Physical Prompts
 Schedules and Mini-
Schedules
 Modeling of Skills and
Positive Behavior
 Child’s Physical and
Emotional state
 Language Environment
Antecedents to new learning
 Assure optimal physical and emotional state
– address student’s anxiety
– good nutrition and energy
 Provide a “warm-up” before tests, class-work,
introduction of new material.
 Carefully task analyze activity and provide
explicit instruction for each component.
 Don’t quiz or question; teach using the “I do/ We
do/ You do” model.
Antecedents: Physical
environment and workspace
Set the stage for success:
Increase structure, clarity, and
predictability
Provide prepared materials
Make the task concrete
Use the everyday environment
 Stick to a routine during the day and problem-solve
snags in the environment where they occur.
 Organize work, play, relaxation, and regrouping
spaces to support the activity.
 Prepare your child in advance if there is something
you need him to do
 Focus on the positive: tell your child what to do;
avoid telling the child what s/he should stop doing.
 Rehearse with your child what he/she will be doing
during unstructured times or in new settings.
Teach new skills
 Hold a small and clearly defined set of expectations
for your child.
 Use visual reminders and teach their use.
 Break down complex or multi-step activities and
sequence them, using pictures or written phrases to
serve as a concrete representation and reminder.
 Construct, and teach the use of, a daily planner.
 Role-play specific activities and desired behaviors.
 Teach play-yard or free time skills.
 Practice desired responses to stressful events.
Index and Neurodevelopmental
Clusters
 Developed by listing behavioral symptoms/
concerns of parents and teachers associated with
Diagnostic Impressions from multidisciplinary
neuropsychological assessments.
 Provides a way to organize, integrate a host of
disparate symptoms into a few main categories.
 Provides “cookbook” use of manual.
It Definitely Takes Teamwork: Education,
Communication, and Using Outside Resources
Referenced Works
 Chapman S. (2007). Neurocognitive stall: a paradox in long-term
recovery from pediatric brain injury. Brain Injury Professional, 3(4),
10-13.
 Dise-Lewis JE, Lewis H, & Reichardt CS. (2009). BrainSTARS: Pilot
data on a team-based intervention for children who have traumatic
brain injury. Journal of Head Trauma Rehabilitation, 24(3), 166-177.
 Erikson EH. (1964). Childhood and Society. New York, NY: Norton.
 Hendryx PM, Verdun WH. (1995). Diagnosis and treatment strategies
for the latent sequelae of head trauma in children. J Cognitive
Rehabilitation; 13: 9-11.
Referenced Works
 Kirkwood, M. W., & Yeates, K. O. (2010). Mild traumatic brain injury
in childhood. In V. Anderson & K.O. Yeates (Eds.). Pediatric
Traumatic Brain Injury: New Frontiers in Clinical and Translational
Research. Cambridge: Cambridge University Press.
 Kirkwood MW, Yeates KO, Taylor HG, Randolph C, McCrea M &
Anderson VA (2008). Management of pediatric mild traumatic brain
injury: A neuropsychological review from injury through recovery.
The Clinical Neuropsychologist, 22, 769-800.
 Piaget J. (1936). Origins of Intelligence in the Child. London, England:
Rutledge and Paul.
 Ylvisaker M, Adelson D, Braga LW et al. (2005). Rehabilitation and
ongoing support after pediatric TBI: twenty years of progress. J Head
Trauma Rehabilitation, 20(1): 95-109.