Key Developments in Advocacy Efforts for Persons with Traumatic Brain Injury


Capitol buildingThe first conference dedicated to TBI was the 1977 Williamsburg Conference .

  • The goal was to inspire health care providers to focus clinical care and research on issues related to rehabilitation for persons with TBI.


The Brain Injury Association of America (originally known as the National Head Injury Foundation) was founded in April 1980.

  • Through state affiliates, local chapters and support groups, the BIA offers information, advocacy and support to persons with TBI and their families.


The TBI Act of 1996 created the Health Resources and Services Administration (HRSA) TBI Program.

  • This program oversees and administers a system of funding for states to develop TBI infrastructure.


The Centers for Disease Control (CDC) published a report detailing the prevalence of TBI: TBI in the United States: A Report to the Congress.

  • This report provided details about the incidence, causes, severity, associated disabilities, and prevalence of TBI, documenting that TBI is a significant public health issue.


The US Congress passed the TBI Act Amendments of 2000, which required the CDC to report to Congress how best to measure the incidence and prevalence of mild TBI.


The Mild Traumatic Brain Injury (MTBI) Work Group formed by the CDC published: Report to Congress on Mild Traumatic Brain Injury in the United States: Steps to Prevent a Serious Public Health Problem

  • This document described the significance of mild TBI from a public health perspective and offered recommendations for measuring the extent of the problem in the US.


HRSA TBI Program

Other Federal Agencies Relevant to TBI Advocacy

Legislation Relevant to TBI Advocacy



Health Resources and Services Administration (HRSA) TBI Program


Established following a mandate from the TBI Act of 1996,

the HRSA TBI Program oversees grant programs

that provide funding for states to develop TBI infrastructure.


Four Components of States’ Infrastructure

·         TBI Advisory Board

o    Provides counsel to state agencies involved in TBI services and advocates for additional TBI services.

·         Lead State Agency

o    In Missouri, the Department of Health and Senior Services is the lead agency for TBI-related services in the state.

·         Statewide Needs Assessment

o    Conducted to identify strengths as well as unmet needs in services offered for persons with TBI.

o    This assessment was completed for Missouri in 2004.

·         Statewide TBI Action Plan

o    Based on the Needs Assessment, states develop a plan for improving TBI services across the state.



Two HRSA Grants Programs

·         State Implementation Partnership grants

o    Up to 4 year grants to support development of State infrastructure.

o    By 2008, 47 states, 1 territory and the District of Columbia had received funding through this mechanism.

·         TBI Protection and Advocacy grants

o    Since 2000, Protection and Advocacy agencies in each state are eligible for funds that can be used to benefit persons with TBI and their families.

§  Funding can be used for information and referral services, advocacy, and litigation services for individuals affected by TBI.

§  Since 2003, these funds have been distributed such that all states and territories receive some monies to support these activities.

Other Federal Agencies Relevant to TBI Advocacy

Centers for Disease Control (CDC)

Primary responsibility: Examine the prevalence of TBI and develop a reporting system.

·         TBI surveillance system was developed

o    In 1999, the CDC published a report documenting the prevalence, morbidity and mortality of TBI

§  TBI in the United States: A Report to the Congress

o    In March 2010, the CDC published a follow up report, documenting the 5-year incidence of emergency room visits, hospitalizations and deaths due to TBI.

§  Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations and Deaths, 2002-2006

·         Mild TBI Work Group was established

o    Consists of experts in the field of TBI.

o    In 2002, the CDC began distributing an informational toolkit designed for primary care physicians to improve clinical management for patients with MTBI.

§  Heads Up: Brain Injury in Your Practice

o    In 2003, this group published a report documenting the significance of mild TBI from a public health perspective and offered recommendations for measuring the extent of the problem in the US.

§  Report to Congress on Mild Traumatic Brain Injury in the United States: Steps to Prevent a Serious Public Health Problem   

·         Efforts to reach specific populations

o    In 2002, the CDC published Información Acerca de la Lesión Cerebral Leveto help Spanish-speaking individuals understand TBI and its symptoms, and find resources in the community.

o    The CDC also sponsors a help line that is staffed by Spanish-speaking operators: 1-800-444-6443.


National Institutes of Health (NIH)

Primary Responsibility: To support research to help identify therapies and develop practice guidelines.

·         The National Institute for Neurological Disorders and Stroke (NINDS) is the institute most involved in TBI research. NINDS activities include:

o    The publication of informational brochures on TBI.

o    Funding of clinical trials for interventions to improve functioning post-TBI.

§  See NINDS Patient Recruitment site for studies currently recruiting participants.



Department of Transportation

The Department of Transportation’s National Highway Traffic Safety Administration (NHTSA) funds TBI-focused research and prevention activities, including:

·         Research to increase knowledge of the biomechanics of TBIs, which could result in improvements in designs of motor vehicle and safety gear

·         Research promoting the development of technology to hasten the delivery of medical care immediately following motor vehicle accidents

·         Epidemiological research detailing the influence of motorcycle helmet laws on safety.

Veterans Administration (VA)

·         In 2007, the VA implemented a screening protocol to identify mild TBI in service members involved in Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF).

·         VA health centers have outreach programs to encourage veterans to undergo the screening for mild TBI.

To improve long-term services to veterans with TBI and their family members, the VA has developed national and local education and support programs for families of OEF/OIF veterans.

Legislation Relevant to TBI Advocacy


TBI Act of 1996 (P.L. 104-166)

·         Passed during 104th Congress and signed into law by President Clinton on July 19, 1996.

·         Recognized TBI as a cause of disability.

·         Directed the Health Resources and Services Administration (HRSA), Centers for Disease Control (CDC), and National Institutes of Health (NIH) to engage in various missions to address needs of individuals with TBI.  (See sections on HRSAand Other Federal Agencies.)

Children’s Health Act of 2000 (P.L. 106-310)

·         Passed during the 106th Congress.

·         Title XIII of the bill established grants to be administered through HRSA TBI Program to support state TBI registries.

·         Also called for the inclusion of data on children in studies of the prevalence and incidence of TBI.


Individuals with Disabilities Education Act (IDEA; Public Law No. 94-142)

·         Mandates free public education with accommodations in the least restrictive environment for children with disabilities.

·         Mandates transition planning to address needs following the completion of school

o    This can promote collaborations between schools and state vocational rehabilitation agencies.

·         In 1992, TBI (secondary to external trauma only) was designated as a separate category eligible for services under IDEA.


Americans with Disabilities Act (PL 101-336)

·         Passed in 1990, this legislation promotes fair treatment of individuals with TBI and other disabilities.

·         Three titles of the Act provide safeguards against discrimination based on disability in the areas of employment, government services, and public and commercial facilities.

·         Importantly for individuals with TBI, the ADA prohibits discrimination against individuals with cognitive disabilities.


Rehabilitation Act of 1973

·         Amended in 1986 and 1992, this legislation supports the distribution of grants to state agencies providing vocational rehabilitation services to individuals with disabilities.

·         Individuals with TBI were deemed eligible for services under the Rehabilitation Act after the TBI Act in 1996 was passed.

·         The Title I Vocational Rehabilitation Program of the Rehabilitation Act currently provides the largest source of federal funding for TBI services.

o    States receive funding based on population and per capita income.

o    Money is used for supported employment programs and for technology to improve lives of individuals with disabilities (i.e., for mobility, communication, computers, ADL aids).

Helmet Use Legislation

·         In 1967, the federal government required states to pass universal helmet laws in order to qualify for highway construction funds and federal safety programs.

·         In 1976, Congress removed this requirement to withhold funding from states without universal helmet laws.

·         The 1991 Intermodal Surface Transportation Efficiency Act (ISTEA) again encouraged states to pass universal helmet laws and safety belt laws

o    By 1995 this provision was altered, providing states an opening for repealing universal helmet laws.

·         As of September 2009, 20 states had universal helmet laws, 27 states had partial use laws (requiring helmets for limited populations, such as young riders), and 3 states had no helmet use laws.

Youth Concussion Legislation

·         Several states are considering and/or have passed legislation that provides guidance regarding return to play questions following TBI in young athletes. (See section on Sports-Related TBI).