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Brain Injury Association of America Testimony to House Subcommittee on Labor Health and Human Services

Here is the testimony submitted by the Brain Injury Association of America (BIAA)  to the Senate Appropriations Subcommittee on Labor Health and Human Services and Related Agencies concerning proposed funding increases for TBI Act programs and the TBI Model Systems of Care Program.

Testimony of the Brain Injury Association of America on CDC, HRSA – Department of Health and Human Services, NIDRR – Department of Education:

Prepared for the Subcommittee on Labor, Health and Human Services,

Education and Related Agencies

May 6, 2013

Chairman Harkin and ranking member Moran, thank you for the opportunity to submit this written testimony with regard to the FY 2014 Labor-HHS-Education appropriations bill. This testimony is on behalf of the Brain Injury Association of America (BIAA), our national network of state affiliates, and hundreds of local chapters and support groups from across the country.

In the civilian population alone every year, more than 1.7 million people sustain brain injuries from falls, car crashes, assaults and contact sports. Males are more likely than females to sustain brain injuries. Children, teens and seniors are at greatest risk.

Recently, we are seeing an increasing number of service members returning from the conflicts in Iraq and Afghanistan with TBI, which has been termed one of the signature injuries of the War. Many of these returning service members are undiagnosed or misdiagnosed and subsequently they and their families will look to community and local resources for information to better understand TBI and to obtain vital support services to facilitate successful reintegration into the community.

For the past 14 years Congress has provided minimal funding through the HRSA Federal TBI Program to assist States in developing services and systems to help individuals with a range of service and family support needs following their loved one’s brain injury. Similarly, the grants to state Protection and Advocacy Systems to assist individuals with traumatic brain injuries in accessing services through education, legal and advocacy remedies are woefully underfunded. Rehabilitation, community support and long-term care systems are still developing in many States, while stretched to capacity in others. Additional numbers of individuals with TBI as the result of war-related injuries only adds more stress to these inadequately funded systems.

BIAA respectfully urges you to provide States with the resources they need to address both the civilian and military populations who look to them for much needed support in order to live and work in their communities.

With broader regard to all of the programs authorized through the TBI Act, BIAA specifically requests:

$10 million (+ $4 million) for the Centers for Disease Control and Prevention TBI Registries and Surveillance, Brain Injury Acute Care Guidelines, Prevention and National Public Education/Awareness

 $8 million (+ $1 million) for the Health Resources and Services Administration (HRSA) Federal TBI State Grant Program

$4 million (+ $1 million) for the HRSA Federal TBI Protection & Advocacy (P&A) Systems Grant Program

CDC – National Injury Center - The Centers for Disease Control and Prevention’s National Injury Center is responsible for assessing the incidence and prevalence of TBI in the United States. The CDC estimates that 1.7 million TBIs occur each year and 3.4 million Americans live with a life-long disability as a result of TBI. In addition, the TBI Act as amended in 2008 requires the CDC to coordinate with the Departments of Defense and Veterans Affairs to include the number of TBIs occurring in the military. This coordination will likely increase CDC’s estimate of the number of Americans sustaining TBI and living with the consequences.

CDC also funds states for TBI registries, creates and disseminates public and professional educational materials, for families, caregivers and medical personnel, and has recently collaborated with the National Football League and National Hockey League to improve awareness of the incidence of concussion in sports. CDC plays a leading role in helping standardize evidence based guidelines for the management of TBI and $1 million of this request would go to fund CDC’s work in this area.

HRSA TBI State Grant Program - The TBI Act authorizes the HHS, Health Resources and Service Administration (HRSA) to award grants to (1) states, American Indian Consortia and territories to improve access to service delivery and to (2) state Protection and Advocacy (P&A) Systems to expand advocacy services to include individuals with traumatic brain injury. For the past thirteen years the HRSA Federal TBI State Grant Program has supported state efforts to address the needs of persons with brain injury and their families and to expand and improve services to underserved and unserved populations including children and youth; veterans and returning troops; and individuals with co-occurring conditions

In FY 2009, HRSA reduced the number of state grant awards to 15, in order to increase each monetary award from $118,000 to $250,000. This means that many states that had participated in the program in past years have now been forced to close down their operations, leaving many unable to access brain injury care.

Increasing the program to $8 million will provide funding necessary to sustain the grants for the 21 states currently receiving funding along with the three additional states added this year and to ensure funding for four additional states. Steady increases over five years for this program will provide for each state including the District of Columbia and the American Indian Consortium and territories to sustain and expand state service delivery; and to expand the use of the grant funds to pay for such services as Information & Referral (I&R), systems coordination and other necessary services and supports identified by the state.

HRSA TBI P&A Program - Similarly, the HRSA TBI P&A Program currently provides funding to all state P&A systems for purposes of protecting the legal and human rights of individuals with TBI. State P&As provide a wide range of activities including training in self-advocacy, outreach, information & referral and legal assistance to people residing in nursing homes, to returning military seeking veterans benefits, and students who need educational services.

Effective Protection and Advocacy services for people with traumatic brain injury is needed to help reduce government expenditures and increase productivity, independence and community integration. However, advocates must possess specialized skills, and their work is often time-intensive. A $4 million appropriation would ensure that each P&A can move towards providing a significant PATBI program with appropriate staff time and expertise.

NIDRR TBI Model Systems of Care - Funding for the TBI Model Systems in the Department of Education is urgently needed to ensure that the nation’s valuable TBI research capacity is not diminished, and to maintain and build upon the 16 TBI Model Systems research centers around the country.

The TBI Model Systems of Care program represents an already existing vital national network of expertise and research in the field of TBI, and weakening this program would have resounding effects on both military and civilian populations. The TBI Model Systems are the only source of non-proprietary longitudinal data on what happens to people with brain injury. They are a key source of evidence-based medicine, and serve as a “proving ground” for future researchers.

In order to make this program more comprehensive, Congress should provide $11 million (+ $1.5 million) in FY 2014 for NIDRR’s TBI Model Systems of Care program, in order to add one new Collaborative Research Project. In addition, given the national importance of this research program, the TBI Model Systems of Care should receive “line-item” status within the broader NIDRR budget.

We ask that you consider favorably these requests for the CDC, the HRSA Federal TBI Program, and the NIDRR TBI Model Systems Program to further data collection, increase public awareness, improve medical care, assist states in coordinating services, protect the rights of persons with TBI, and bolster vital research.

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