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Traumatic Brain Injury - Services & Other Resources

Page Contents

Information & Support
Tools
Services
Studies

Information & Support

For Parents and Patients

Abusive Head Trauma (Shaken Baby Syndrome)
Abusive head trauma/inflicted traumatic brain injury — also called shaken baby/shaken impact syndrome (or SBS) — is a form of inflicted head trauma.

Brain Injury: The ABC Years ( PDF Document 90 KB)
According to the Centers for Disease Control and Prevention (CDC), an estimated 5.3 million Americans currently live with disabilities resulting from brain injuries. A publication of the Brain Injury Association of America.

Brainline Kids – Helping Kids with Brain Injury
BrainLine Kids, a feature of Brainline.org, provides information about children ages birth through 22 years who are affected by Traumatic Brain Injury. Children aged 0 to 4 years and older adolescents aged 15 to 19 years are among the groups most likely to sustain a TBI.

CDC: Traumatic Brain Injury
Educational initiatives and campaigns from the CDC for clinicians, parents, educators, coaches, and individuals including children with TBI. Free, downloadable materials and fact sheets.

Easter Seals National Home Page
Easter Seals is a non-profit organization offering services for individuals with disabilities and their families. Primary services include medical rehabilitation, early intervention, physical and occupational therapy, speech and hearing therapy, child care, recreation and transition.

FAQs (Brain Injury Resource Foundation)
The Brain Injury Resource Foundation responds to frequently asked questions regarding brain injury.

FAQs (NRC for TBI)
This webpage of the National Resource Center for traumatic brain injury is for patients, parents, and families. It provides links to questions and answers by categories and addresses physical, behavioral, and educational problems, legal issues, insurance, resources, vocation and independent living.

Family Functioning Following Pediatric Traumatic Brain Injury ( Word Document 80 KB)
Of the more than 100,000 children each year who are hospitalized with traumatic brain injury (TBI), many experience subsequent long-term physical, intellectual and behavioral deficits. From the Brain Injury Association of Washington website (www.braininjurywa.org).

Fatigue ( PDF Document 41 KB)
Courtesy of Dr. Glen Johnson, Clinical Neuropsychologist, this handout describes fatigue and ways to adjust to the fatigue factor. Originally written for adults.

Infant Head Injury
Any kind of head injury can be scary, but when the injured is a young child or baby, it becomes even harder to assess the damage.

National Resource Center for TBI
This site, hosted by the Department of Physical and Rehabilitation Medicine at Virginia Commonwealth University, answers basic questions for parents and teachers, provides lists of links that address a multitude of topics such as medication, education, family support, legal issues, rehab resources and more.

Pediatric Neuropsychology: A Guide for Parents ( PDF Document 456 KB)
Describes pediatric neuropsychology, how it differs from a school psychological assessment, reasons for referral, what is assesed and what it will tell you about your child. Also discusses preparation for the test.

The Road to Rehabilitation Series ( PDF Document 758 KB)
A compilation of 8 articles (total 80 pages) from the Brain Injury Association of America (www.biasusa.org) for TBI patients and families about dealing with pain, headaches, cognition and memory, behavior changes, speech and language, drug therapy, spasticity, and concussion/mild brain injury.

Traumatic Brain Injury (MedlinePlus)
from the National Library of Medicine and National Institutes of Health; offers an overview and an extensive compilation of links to reliable web sites and organizations related to TBI.

Traumatic Brain Injury (NICHCY)
From the National Dissemination Center for Children with Disabilities; parent-focused page about TBI, includes information about education.

Traumatic Brain Injury (NINDS)
from the National Institute of Neurological Disorders and Stroke, provides an overview and links to publications and relevant organizations; not pediatric-specific.

Traumatic Brain Injury, Susan's Story ( PDF Document )
An explanation for parents about traumatic brain injury from the National Dissemination Center for Children with Disabilities (NICHCY)with a clear description of TBI and tips for parents and teachers and a listing of resources and organizations.

Types of Memory ( PDF Document 59 KB)
A handout developed by Dr. Glen Johnson, Clinical Neuropsychologist, that describes the types of memory, things that affect memory, and tips for improving memory.

When Your Child Is In The Hospital
A Children’s Hospital Boston Resource Guide for parents. Although it has information specific to the Boston area, there are some great tools/resources for families in any state.

Support

Brain Injury Association of America
National Organization whose site provides information, links to resources, publications, and information about policy/legislation and state chapters.

Brain Injury Association of Utah
A non-profit organization dedicated to education and support for the prevention and recovery of brain injury. The site lists services (support groups, helpline, community education, conferences, legislative liaisons) and offers family education (simple definitions, a map of the brain with explanations of function, consequences of injury and more).

For Professionals

Brain Trauma Foundation
The BTF is dedicated to disseminating information and education to healthcare professionals and first responders who treat brain injury in the U.S. They have developed guidelines for pre-hospital management, surgical management, and acute medical management of severe TBI in infants, children and adolescents.

CBIRT: Center on Brain Injury Research & Training
Established in 1993 at the Teaching Research Institute, a division of Western Oregon University, CBIRT conducts research and training to improve the lives of children and adults with traumatic brain injury (TBI).

Center for Outcome Measurement in Brain Injury (COMBI)
COMBI is part of the TBI Model Systems Project of the National Institute on Disability and Rehabilitation Research (NIDRR) coordinated through Santa Clara Valley Medical Center. This site provides information about measurement scales that are currently being developed and tested (e.g. Agitated Behavioral Scale (ABS),Disability Rating Scale (DRS), Family Needs Questionnaire (FNQ), etc.)

Diagnosing Pediatric Post-Injury Behavior ( Word Document 36 KB)
The Brain Injury Association of Washington provides information and resources about brain injury in general as well as for children aged birth to four. Diagnosing Pediatric Post-Injury behavior is found under the Children’s Resource list.

HRSA Federal TBI Program
Do you know someone who's had a Traumatic Brain Injury? Chances are you do...

National Resource Center for Traumatic Brain Injury
Offering assessment tools, training program, publications, etc. for professionals and consumers. From the Virginia Commonwealth University Health System.

Project BRAIN: Effects of TBI on Students
Project BRAIN is a resource and training network for educators, families, and health care professionals who support students in Tennessee with traumatic brain injury. This webpage focuses on physical, cognitive and psychosocial/behavioral functioning.

TBI Resources for Educators (Utah)
On the Utah State Office of Education website, these presentations, reports, and guides are designed for educators to provide strategies in working with students with traumatic brain injury. Materials include those developed by the Brain Injury Association of Utah (BIAU).

TBI and Memory webcast
This webcast is designed to increase understanding of TBI and its impact on memory as well as provide research-based strategies proven effective in supporting children with TBI. Includes a training module (ppt) for parents and educators of children who have experienced a TBI. From the Wisconsin Dept of Public Instruction.

The Rehabilitation Research Center for TBI and Spinal Cord Injury
The Rehabilitation Research Center (RRC) for Traumatic Brain Injury (TBI) and Spinal Cord Injury (SCI) at Santa Clara Valley Medical Center is a federally-funded "Model System of Care" and conducts research to better understand and improve outcomes after TBI and SCI. This site offers multiple downloadable files (some in Spanish) for patients and family and opportunities to participate in ongoing research projects.

The Traumatic Brain Injury Networking Team Resource Network
A resource for teachers, clinicians, parents and students. This is a great website with information for both families and professionals, with some info specific to Colorado. It offers a Traumatic Brain Injury Identification and Intervention Protocol as well as helpful documents that can be downloaded from the website. A complete manual is coming soon.

Traumatic Brain Injury (CDC)
Overview, information, and links about TBI and its prevention, from the Centers for Disease Control and Prevention.

Traumatic Brain Injury (NINDS)
from the National Institute of Neurological Disorders and Stroke, provides an overview and links to publications and relevant organizations; not pediatric-specific.

Traumatic Brain Injury Model Systems National Data Center
The Traumatic Brain Injury National Data Center (TBINDC) at Kessler Medical Rehabilitation Research and Education Center is the coordinating center for the research and dissemination efforts of the Traumatic Brain Injury Model Systems (TBIMS) program funded by the National Institute on Disability and Rehabilitation Research (NIDRR).

Traumatic Brain Injury in Young Children: In Harm's Way
Brain Injury Awareness for Head Start Providers. This documentary presentation was created by New Mexico’s Aging and Long-Term Services Department to educate early childhood providers about TBI in young children. It is located with their permission on the Brainline Kids website.

Traumatic Brain Injury in the U.S.:Assessing Outcomes in Children
A summary of the existing measures for assessing outcomes with a description of their applicability to studies of TBI from the Centers for Disease Control and Prevention.

Tools

Behavioral Checklist for Patients with TBI ( PDF Document 50 KB)
The Behavioral Checklist is a questionnaire for parents, patient, teachers, and care providers. It was created by the Primary Children's Rehabilitation Program to assist the physician in identifying key behavioral problems and narrowing the focus of treatment.

Form for Evaluation and Service Recommendations ( PDF Document 40 KB)
A form to facilitate communication between health care providers and school professionals relating to health concerns that impact a student's education.

Glascow Coma Scale ( PDF Document 93 KB)

Heads Up: Brain Injury in Your Practice
CDC, in collaboration with an expert work group, has recently updated and revised the "Heads Up: Brain Injury in Your Practice" tool kit. This tool kit contains practical, easy-to-use clinical information and tools.

Information Release Form (Schools) ( PDF Document 51 KB)
When signed by the parent/guardian, this form will authorize communication between the physician and school officials regarding your patient.

Rancho Los Amigos Cognitive Recovery Scale ( PDF Document 41 KB)

Sleep History Questionnaire ( PDF Document 20 KB)