BrainSTEPS: Assists students, schools and families in Pennsylvania following acquired brain injury

The BrainSTEPS Program Created by: PA Department of Health in 2007 Unique partnership for funding: PA Department of Health PA Department of Education, Bureau of Special Education via the PaTTAN network Implemented by: Brain Injury Association of Pennsylvania

Monica Vaccaro Program Manager Brain Injury Association of Pennsylvania Mary Lou Busby Board of Directors, Brain Injury Association of Pennsylvania Brenda Eagan Brown BrainSTEPS Program Coordinator Brain Injury Association of Pennsylvania Program Steering Committee

What We Will Cover Incidence and causes of brain injury in children Mechanisms of injury Common Effects Patterns of recovery BrainSTEPS School Re-Entry Program Concussion Management Team Program

Traumatic Brain Injury STATISTICS

Brain injury is a leading cause of death and disability in children & young adults.

Children with Traumatic Brain Injury 0-14 years of age CDC Statistics Average ANNUAL number of Traumatic Brain Injury Emergency Department Visits and Hospitalizations in the United States Most children who sustained a TBI (91.5%) were treated and released from the emergency department. United States. Centers for Disease Control. Traumatic Brain Injury in the United States ,000

Each year, approximately 26,000 children in Pennsylvania sustain a traumatic brain injury (mild, moderate, or severe) Source: The Brain Injury Association of Pennsylvania, 2008 How Common is TBI in Children in Pennsylvania?

Mild: Brief or no loss of consciousness Shows signs of concussion vomiting lethargy dizziness lack of recall of injury Moderate: Coma < 24 hours duration Neurological signs of brain trauma Skull fractures with contusion (tissue damage) Hemorrhage (bleeding) Focal Findings on EEG or CT scan Severe: Coma > 24 hours duration Levels of Medical Severity of TBI

In 2006 approx. 4,000 Children & Adolescents in Pennsylvania were HOSPITALIZED with TBI S ource : The Pennsylvania Department of Health, 2006 DOES NOT INCLUDE EMERGENCY ROOM VISITS. Focus:

Why the Discrepancy? Not all children who sustain a brain injury experience lasting effects Not all parents want to have their child classified – they want the child back to “normal” The effects of a brain injury can be latent. Effects of TBI may mimic other disabilities leading to misdiagnosis and inappropriate placement Under-identification and Misidentification within the educational system.

Acquired Brain Injuries : Traumatic & Non-Traumatic

Types of Brain Injury Acquired Brain Injury after birth process Traumatic Brain Injury external physical force Non-traumatic Brain Injury open head injury closed head injury

Definition of Acquired Brain Injury An injury to the brain that has occurred after birth. The injury commonly results in a change in neuronal activity, which effects the physical integrity, the metabolic activity, or the functional ability of the cell. An acquired brain injury may result in mild, moderate, or severe impairments in one or more areas, including: Cognition Speech-language communication Memory Attention/concentration Reasoning Abstract thinking Physical functions Psychosocial behavior Information processing

Types of Brain Injury Acquired Brain Injury after birth process Traumatic Brain Injury external physical force Non-Traumatic Brain Injury open head injury closed head injury

Non-Traumatic Brain Injury Causes Cerebral Vascular Accidents  Vascular Occlusions  Hemorrhaging  Aneurysms Ingestion of Toxic Substances  Inhalation of Organic Solvents  Ingestion of Heavy Metal  Alcohol and Drug Abuse

Infections of the Brain Hypoxia – reduced oxygen to the brain Anoxia – no oxygen to the brain  Brain Abscesses  Meningitis  Encephalitis Non-Traumatic Brain Injury Causes

Anoxia – common causes Respiratory arrest Electrical shock Heart attack Brain tumor Heart arrhythmia Extreme low blood pressure CO2 inhalation Poisoning Choking Suffocation Respiratory conditions that affect breathing

Lightning

Near Drowning

Brain Tumors & Cancer Chemotherapy/Radiation Effects

Bleeding in the brain

Acquired Brain Injury after birth process Traumatic Brain Injury external physical force Non-traumatic Brain Injury open head injury closed head injury Types of Brain Injury

Definition of traumatic brain injury or both, that adversely affects a person’s performance” “an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, Brain Injury Association of America

Open Head Injury: Gunshot Wound

Centre for Neuro Skills What Happens During a Closed Head Injury ?

Skull Anatomy Dr. Mary Pepping of the University of Idaho’s presentation The Human Brain: Anatomy,Functions, and Injury Bony Ridges The skull is a rounded layer of bone designed to protect the brain from penetrating injuries. The base of the skull is rough, with many bony protuberances. These ridges can result in injury to the temporal and frontal lobes of the brain during rapid acceleration.

Skull Protrusions

Shaken Baby Syndrome

Car Accidents

EACH YEAR – Hundreds of Thousands of Student Athletes Sustain Concussions  Defined as a trauma- induced alteration in mental status (dazed, disoriented, confused)  May or may not involve loss of consciousness  Can result in loss of memory for events immediately before or after trauma  Can result in local neurological deficits that may or may not be transient

If concussion occurs as a sports or recreational injury Clearing for return to play Challenges students face Treatment & compensatory strategies Facilitating a successful school re-entry

Signs and Symptoms of Concussion

Decreased Processing Speed Short-Term Memory Impairment Concentration Deficit Irritability/Depression Fatigue/Sleep Disturbance General Feeling of “Fogginess” Academic Difficulties Post-Concussion Syndrome (persistent symtoms)

A Child’s Brain

Underdeveloped – the younger the child, the less developed is their brain Easily Injured – infant’s neck is weak Unlike the heart or kidney, the brain needs time & experience to mature Undifferentiated – as learning occurs, specialization develops in the brain

A Child’s Brain New abilities build on ESTABLISHED skills over time Brain injury interrupts skill development, and can prevent new skills from developing Child’s brain was thought to have “plasticity,” yet does not “bounce back” after injury

Rates of Development: 5 Peak Maturation Periods Peak Maturation Periods FIVE distinct stages between the ages of 1 and 21 yrs. % of maturation increments age increments Frontal lobes still developing

Brain Injury & Developmental Stages In the normal brain, cognitive, emotional, & social abilities emerged developmentally. Abilities developed at one stage of life form the foundation for more complex abilities later on.

Brain Injury & Developmental Stages Capacities in the process of development, and those not yet developed are those most vulnerable to brain injury. The earlier the injury, the more pervasive the impact on thinking, emotional regulation, and behavior.

Important Developmental Stages Child’s stage of development when injury happened Child’s stage of development NOW

Growing Up Performance Normal Development Development Without Brain Injury Diagram by Dr. Sandra Chapman, University of Texas

Growing Up Performance Brain Injury Normal Development Traumatic Brain Injury Without Intervention Diagram by Dr. Sandra Chapman, University of Texas

Growing Up Performance Benefit of Intervention in Multiple Time Frames Traumatic Brain Injury with Support Diagram by Dr. Sandra Chapman, University of Texas

Pre-Existing Conditions & TBI Children with pre-existing behavioral weaknesses are much more likely to have a TBI. Effects of TBI will compound and add to pre- existing learning, behavioral or psychological problems, such as: » Dyslexia » ADHD » Paranoia » Depression

Visible, physical recovery is a sign that the brain is healed... REALITY: Cognitive & behavioral effects of a brain injury can last long after the person heals “on the outside” Younger kids are more resilient & can “bounce back” easier and more quickly after a brain injury... REALITY: It may just take longer for the effects of a brain injury to show up in a developing brain M Y T H : Tennessee’s Project Brain, 2008

Effects of Brain Injury on Children

Physical Effects Seizures Headaches Changes in speech & language Sensory changes Taste Smell Hearing Vision

Physical Effects Reduced Stamina Weakness - Navigating between classes quickly - Carrying books - Physical Education class impact Difficulty with balance, paralysis, paresis, spasticity

Cognitive Effects Attention or concentration Ability to initiate, organize, or complete tasks Ability to sequence, generalize, or plan Flexibility of thinking, reasoning, or problem solving

Cognitive Effects Abstract thinking Information processing (slowed speed) Judgment or perception Long-term or short-term memory

Cognitive Effects Confabulation Ability to acquire or retain new information Inconsistent and unpredictable learning rate

Psychosocial Adjustment Family’s Ability to Cope Denial of Illness Affective Problems

Psychosocial Adjustment is Influenced by: Behavioral Problems Cause of Behavior Problems Pre-Injury Personality Traits

Social, Emotional,Behavioral Issues Distractibility Impulsivity Irritability Aggression Motivation & Initiation Depression Lack of Social Judgment Denial/Lack of Self-Awareness Rigidity/Inflexibility Low Frustration Tolerance

Brain Injury VS. Other Disabilities

Similarities Between Students with TBI & Students with Other Neurologic Disabilities Skill Integration Generalization Abstract Reasoning Social Judgment Problems with: Attention Memory Impulse Control Organization

What is Different About Brain Injury? Prior normal development Sudden onset of disability Require hospital to school transition planning Ongoing medical needs Cognitive, physical, and psychological impact

What is Different about Students with Brain Injury? TBI results in disruption of normal brain development Reconciliation of “old” self with “new” self Loss of peer relationships & change in family dynamics

What is Different About Students with Brain Injury? Exacerbation of prior difficulties HOW Having to learn HOW to learn again More extreme discrepancies among abilities More uneven and unpredictable progress

What is Different About Students with Brain Injury?  Relearning of old material - may learn faster at first  Problems are not developmental  Reliance on previous learning strategies – might not be effective now

Psychological Testing TEST SCORES on typical school psychological & IQ tests are NOT indicative of future learning capabilities for a TBI student. Many tests measure only previously learned skills, which tend to remain intact after a brain injury. Usually perform fairly well during ONE-on-ONE testing that has no generalization or carry-over Evaluation MUST be ongoing.

BrainSTEPS: Assists students, schools and families in Pennsylvania following acquired brain injury

BrainSTEPS Assists Students with All Acquired Brain Injuries Traumatic Brain Injury (includes Concussions) Non-Traumatic Brain Injury * Any child who has a brain injury that occurs AFTER the birth process can be referred to BrainSTEPS

The BrainSTEPS Program Brain injury consulting teams available to families and schools throughout Pennsylvania. Teams are extensively trained in the educational needs of students returning to school following brain injury. Teams consult with & train local school staff to develop educational programs.

31 BrainSTEPS teams cover PA 29 are based out of the educational Intermediate Units and 2 school districts 300+ active, trained BrainSTEPS team members – Educational professionals – Medical professionals – Rehabilitation professionals – Staff from community facilities – Staff from government agencies – University faculty – Family members BrainSTEPS Teams

Hospital & Rehabilitation Team Members Children’s Hospital of PhiladelphiaThe Children’s Institute of Pittsburgh Acadia Rehabilitation, Inc.Lehigh Valley Hospital Good Shepherd RehabilitationNemours/A.I. duPont Hospital for Children (Delaware) Beechwood NeuroRehabMainline Rehabilitation The Barber InstituteMagee Rehab Hospital Geisinger Medical CenterSchuylkill Rehabilitation Reading HospitalSt. Vincent’s Medical Center

What BrainSTEPS Teams Can Do: 1.Prepare the student for return to school 2.Communicate with the district & medical, & rehab professionals 3.Gather medical, rehab, & educational reports/evaluations to assist in making educational recommendations 4.Conduct student observations

5.Provide peer, parent and school training 5.Individual to student needs for school teams 6.General for district wide in-service trainings 6.Consult on all aspects of the student’s educational plan & make recommendations to the district team 7.Assist in transitioning a student from grade to grade or school to school by training new teachers What BrainSTEPS Teams Can Do:

8.Serve as a consistent point of contact for students 9.Offer families support, education and connections to community resources 8. Continually update their brain injury expertise by attending mandatory BrainSTEPS trainings, obtaining CBIS certification, and participate in other brain injury training opportunities

11. It is a goal of the BrainSTEPS Teams to monitor all referred students annually until graduation.

Communication with family Communication with school Consultation with student Records review Consultation: strategies Consultation w/ medical professionals Consultation educational plan Training of educators and support staff Classroom and peer education Information sharing among team Demonstration of interventions Observations/evaluations of student Participation in IEP and 504 meetings BrainSTEPS Consultation Activities

Who is referred to BrainSTEPS? A student who: 1.Has an acquired brain injury At any point in the student’s life 2.Is having difficulty at school as a result of the acquired brain injury Concussions – referrals taken at 4wks. post unless there are “concussion modifiers” present All other brain injury severities – referrals taken at any point in time. The sooner the better

How to make a student referral to BrainSTEPS

BrainSTEPS referrals

Students Served by BrainSTEPS: Students 2,387

Female: 45% Male: 55% Most prevalent AGE AT INJURY for referrals continues to be: 14 yrs & 15 yrs

Students referrals from: 65 out of 67 counties and 620 School Entities (public, private, charter)

Injury Type and Severity

BrainSTEPS Concussion Support Statewide Return to School Concussion Management Team Project

Schools should ensure that cognitive demands (school work) placed on a student are below the student’s individual symptom threshold

Return to School BrainSTEPS Concussion Management Team Project (CMT) 2013 – 2 CMT monitors Academic Monitor (School Psych, Guidance Counselor) Symptom Monitor (School Nurse) – 700+ CMTs formed & trained by BrainSTEPS across the state of PA since January 2013 (as of 8/2013) – CMTs follow BrainSTEPS Return to School Concussion Protocol

School Work After Concussion Informal Accommodations/Adjustments 100% Formal ACCOMMODATIONS / BrainSTEPS Brain Injury Supports Framework / 504 Plan 10-20% MODIFY Very, very few Initial 4 Weeks Beyond 4 Weeks Beyond 6 months

Concussion CMT Monitoring School level BrainSTEPS 4 wks - IU level PA’s Unique Layered Statewide Infrastructure for Concussion Return to School 1 st layer 2 nd layer

Resources

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