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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.

Brain Injury Association of America: Legislative News

Here is the latest legislative news report from the Brain Injury Association of America (BIAA):

Traumatic Brain Injury (TBI) Act Reauthorization 2013

On Wednesday, March 13, 2013, the TBI Act, H.R. 1098, was introduced by Reps. Pascrell and Rooney, co-chairs of the Congressional Brain Injury Task Force. This bill will reauthorize the current programs relating to TBI and also will move the state grant and protection and advocacy grant programs from the Maternal and Child Health Bureau to another agency with the U.S. Department of Health and Human Services. The move acknowledges the impact of TBI across the age span, including older adults and returning service members/veterans. The Congressional Brain Injury Task Force recommends relocating the program to better coordinate with federal agencies regarding long-term services and supports available to individuals with other disabilities, particularly the long-term services and supports provision of the Affordable Care Act. BIAA thanks Reps. Pascrell and Rooney for introducing this important legislation. Please call your Member of Congress and ask them to co-sponsor H.R. 1098 today!

President's Budget FY 2014

This week, President Obama released his proposed fiscal year (FY) 2014 budget. In the budget, the President proposed to cancel sequestration and replace it with an additional $1.8 trillion in deficit reduction through new revenue, $400 billion in health savings, Social Security changes, and $200 billion in discretionary cuts split evenly between defense and nondefense programs. It is unlikely Congress will pass the president's budget.

Also in the President's proposed FY2014 budget, BIAA is pleased to report that programs authorized by the TBI Act, including the HRSA Federal TBI Program and the CDC's important TBI work have both been recommended to receive at least the same funding found in FY12 final and FY13 CR appropriations bills, $10 million for HRSA and just under $7 million for CDC.

The CDC collects data, links both military and civilian populations with TBI services, increases public awareness, and conducts public health research. The HRSA Federal TBI Program funds 21 states to improve systems coordination access to care for people with brain injury.

The budget recommends $110 million in funds for the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education. NIDRR administers grants to the TBI Model Systems which is a collection of research centers located across the United States that conduct disability and rehabilitation research. The TBI Model Systems are the only source of non-proprietary longitudinal data on what happens to people with brain injury. The TBI Model Systems are a key source of evidence-based medicine, and serve as a "proving ground" for future researchers.

 

BIAA will continue to work to ensure that legislators understand the importance of these programs and how they affect the 3.5 million people across the United States with brain injury. 

Mapping the Human Brain

The New York Times reports this morning that the Obama admiration will announce a plan latter today for the investment of $100 million starting in 2014 focused on research to understand how the human brain functions. “Obama to Unveil Initiative to Map the Human Brain”

The plan is to develop new technology that will enable scientists to map and understand the complex circuits that comprise the human brain.  According to the Times story, “The effort will require the development of new tools not yet available to neuroscientists and, eventually, perhaps lead to progress in treating diseases
like Alzheimer’s and epilepsy and traumatic brain injury. It will involve both government agencies and private institutions”.

The plan has been named the Brain Research Through Advancing Innovative Neurotechnologies, or Brain for short. Government agencies to be involved in the project are: the National Institutes of Health, the Defense Advanced
Research Projects Agency and the National Science Foundation.

Seeking Comments on the Pediatric Mild TBI Guideline Protocol

Between March 7 and April 7, the Pediatric Mild Traumatic Brain Injury (TBI) Guideline Workgroup is seeking public comment on a guideline protocol on diagnosing and treating pediatric mild TBI (among patients age 18 and under).

Comprised of leading experts in the field of TBI, CDC Injury Center’s Board of Scientific Counselors established the Pediatric Mild TBI Guideline Workgroup to create a clinical guideline for health care professionals working in the acute care and primary care setting.

The Workgroup is using the American Academy of Neurology’s (AAN) guideline development process to develop a multidisciplinary, evidence-based guideline. You can access the guideline protocol for review and comment   by clicking here 

Public comment on the guideline protocol is one of the first steps in the evidence-based clinical guideline development process. To learn more about the Pediatric Mild TBI Guideline Workgroup and next steps for the project, click here 

National Brain Injury Survey from Sarah Jane Brain Foundation

The Sarah Jane Brain Foundation (SJBF) and CE Outcomes have announced a national survey to identify gaps in services and research dealing with brain injury.

This is a joint effort during Brain Injury Awareness Month to understand the current state of brain injury across the country and across two different clinical populations (youth/developing brain and adult/developed brain).

The survey will investigate the differences in services between “Mild” TBI/concussions and moderate to severe brain injury. In addition, the assessment will analyze across the continuum of care from prevention to acute care/rehabilitation services to reintegration/long-term care. The online survey is being hosted by CE Outcomes and can be accessed by clicking here.

“This survey will include physicians, psychologists, educators, allied health professionals, and most importantly families and brain injury survivors across this country,” said Dr. Ron Savage, President of SJBF and author of the survey. “We will have data from thousands of voices to better understand the gaps in services that impact the lives of millions of people. Those voices will be heard.”

Please attend Brain Injury Awareness Day on Capital Hill

Just a reminder that March 13, 2013 is Brain Injury Awareness Day on Capitol Hill.

The Brain Injury Association of America is working with the Congressional Brain Injury Task Force to plan an important day to provide needed information to members of Congress and their staff on the far reaching and multi-faceted issues facing persons with brain injury and their families. 

Here is the Schedule of Events:

10:00 AM - 2:00 PM
Brain Injury Awareness Fair
Rayburn House Office Building, First Floor Foyer

2:30 PM - 4:00 PM
Briefing: "Promoting Brain Injury Awareness through Public/Private Partnerships"
Rayburn House Office Building, the Gold Room 2168

Panelists:

COL. Jamie B. Grimes, MD, MC, USA, National Director, Defense and Veterans Brain Injury Center
Sara Patterson, Associate Director for Policy, Centers for Disease Control
Katie Clarke Adamson, Director of Health Partnerships and Policy,YMCA of the USA
Roland Gerritsen van der Hoop, MD, PhD, Chief Medical Officer, BHR Pharma
Ralph Ibson, National Policy Director, Wounded Warrior Project

5:30 PM - 7:30 PM
Reception Celebrating Brain Injury Awareness Month
Rayburn House Office Building, B-354

The Brain Injury Association of America (BIAA) encourages advocates to make appoints to visit with congressional representatives during Awareness Day. BIAA's 2013 legislative issue briefs are available at the Advocacy and Government Affairs section of their website. 

New project proposed to map the human brain

A new initiative to map the human brain has been proposed by President Obama according to a story in today’s New York Times.

The Times reports that the project is designed "to do for the brain what the Human Genome Project did for genetics."

According to today’s article, “The project, which the administration has been looking to unveil as early as March, will include federal agencies, private foundations and teams of neuroscientists and nanoscientists in a concerted effort to advance the knowledge of the brain's billions of neurons and gain greater insights into perception, actions and, ultimately, consciousness.”

"Scientists with the highest hopes for the project also see it as a way to develop the technology essential to understanding diseases like Alzheimer's and Parkinson's, as well as to find new therapies for a variety of mental illnesses.”

Rehabilitation Programs for Moderate to Severe Traumatic Brain Injury in Adults: Future Research Needs. Request for Public Comments

The Agency for Healthcare Research and Quality (AHRQ) is soliciting public comment on the following report – Multidisciplinary Rehabilitation Programs for Moderate to Severe Traumatic Brain Injury in Adults: Future Research Needs.

Please consider responding to this request. The deadline for comments is February 21, 2013. A link to the report and guidelines for comments can be found by clicking here.  

Brain Injury Awareness Day, 2013 on Capitol Hill

The Brain Injury Association of America (BIAA) has announced that Brain Injury Awareness Day 2013 will be held on Wednesday, March 13, 2013.

As in years past, there will be an awareness fair, briefing and reception.

The full schedule for the day is as follows: 10:00 AM - 2:00 PM - Brain Injury Awareness Fair - Location to be announced Time to be announced 

Congressional Briefing - Location to be announced 5:30 PM - 7:30 PM 

Congressional Reception - Location to be announced

Additional Activities: BIAA strongly encourages everyone that plans to attend Brain Injury Awareness Day to make appointments with their Representatives and Senators to advocate for increased funding for the programs authorized through the TBI Act.

Free Brain Injury Advocacy Webinar

The Brain Injury Association of New York State is offering a free webinar:  So You Want to Be an Advocate: Federal Overview on Wednesday, January 30, 2013 at 12:00-1:15 p.m. EST. 

This webinar is part of the BIANYS Advocacy Series.  The presentation will provide an overview of Congress and the federal legislative process as it impacts brain injury policy.  Advocates will learn how to work with their congressional delegation, both members of the Senate and House of Representatives, in their efforts to affect public policies that benefit New Yorkers with brain injury and their families. 

Susan L. Vaughn consults with the Brain Injury Association of America (BIAA) on state policy issues. She is also the Director of Public Policy for the National Association of State Head Injury Administrators (NASHIA), of which she is the founder.  Susan has co-authored two articles on public policy and possesses nearly 29 years of experience in the field of disabilities.

There is NO charge for this webinar, but space is limited.  Reserve your webinar seat now by clicking here