these activities so they can work in a coordinated and efficient manner and i proudly serve on the congressional brain injury task force that encourage bipartisan support for tbi research and with that support i am confident that the committee will make even greater strides to help patients living with the aftermaths of tbi. so i want to extend a warm welcome as part of brain injury awareness month and i look forward to your testimony. i yield back to the chairman. >> the chair thank the gentleman. today we have four witnesses on our panel. dr. bonnie strickland, director of divisional services for children with special health care needs. mr. william ditto, director of the new jersey tbi division. new jersey board of health. dr. flora winston, children's hospital, philadelphia, and dr.

mark ashley president of the center for neuroskills. your written testimony will be made part of the record and we ask that you summarize your opening statements in five minutes and dr. strickland, you are recognized at this time for five minutes to summarize and make your opening statement. >> chairman pitts, ranking member palome, thank you for the opportunity to testify on the traumatic brain injury programs. i am dr. bonnie strickland, director of the division of services for the maternal and child health bureau at the health resources, department of heath and human services. h rsa and hhs colleagues, and we welcome the opportunity to discuss the program with you and to provide highlights of other hhs activities. congress has charged hrsa with implementing your american indian consortia to improve access to rehabilitation and other services.

the nih has responsibilities in the areas of research and the cdc has responsibility for prevention and surveillance. samsa provides activities provided under the health service act. hrsa condition cysts of two consist grant programs and protection and advocacy grants. state partnership grantees are required to have or develop a state-wide needs and resource assessment and a comprehensive statewide action plan. with these tools, states have made remarkable progress in increasing access to tbi services and supports through tbi screening programs, training health professionals and service coordination. hrsa's protection and advocacy programs provide specialized legally-based services to help recipients understand laws and training in self-advocacy ensures that individuals with tbi and their families can pursue needed services even if outside representation is unavailable. nih has primary responsibility

for tbi research. the breadth of nih research reflects the complexity of the problems that tbi presents both immediately and in the aftermath of the injury. for example, nih support studies of the mechanisms of damage and the development of diagnostics and therapies and clinical trials and research on brain plasticity and recovery. nih leads a broad range of research related to tbi rehabilitation, falls of the elderly and disorders that often occur such as post-traumatic stress disorder. cdc is responsible for prevention and surveillance. it immrems educational materials and clinical guidelines, informs evidence-based policies such as the head's up initiative and educates health departments on shaken baby syndrome. they have the failed triage guidelines which provides uniform stand arts for emergency

medical service providers and first responders to ensure that patients with tbi are taken to hospitals best suited to address their particular injuries. samhsa focuses on the tbi. zamosa samhsa provides services that reflect an understanding of military culture, service members' experiences and range of potential post-trauma effects. this is primarily accomplished through samhsa's service member, set rans and their family's policy academies. additionally, samhsa has training materials for behavioral health providers who encounter veterans or service members with tbi. in 2011, hrsa convened the traumatic brain injury in order to share information, facilitate collaboration and minimize duplication across agencies. to facilitate this purpose the committee plans to create a centralized online clearing house of federal resources.

the current representatives on the committee are the departments of defense, education and veterans affairs and the social security administration and within hhs, the indian health certains, cdc, nih, samhsa and hrsa. cdc's surveillance may identify tbi in child athletes in a particular state and they may develop educational materials to address the issue. hrsa's state grantee might use the material to conduct a statewide education campaign for student, parents and schools about the risks and consequences of tbi. likewise, hrsa's grantee might use liez a protocol that was informed by nih research to implement a student athlete tbi screening program. in addition to education and screening, hrsa would connect students and families with needed resources. strategies like these allow hrsa state grantees to leverage

resources of other agencies to identify and serve children with risk of sustaining a tbi. opportunities for such a collaboration is the key focus of the inner agency committee. hrsa is committed to ensuring that individuals with tbi and their families have accessible and appropriate services and support nih, cdc and samhsa are making strides in the respective areas of research and behavioral health. we're working together to ensure that our efforts are complimentary and strategic leveraging of resources to address the full spectrum of needs of individuals and families impacted by tbi. mr. chairman, this completes my prepared remarks. once again, thank you for the opportunity to testify today and provide an overview of our tbi program. the chair thanks the gentle lady and recognizes mr. ditto for five minutes. >> thank you very much, chairman pitts and ranking member palome from new jersey. just to clear things up i am the

retired director of the division of disability services in the new jersey department of human services, since i've been given a variety of interesting titles when i was introduced, but i am here today not so much in that role, but more in my role as the chair of the public policy committee for the national association of state head injury administrators, better known as nasha, we are the only non-profit organization that represents state government agencies and services who are involved in community services for individuals with tbi and their family, and i am pleased to give you an opportunity to understand where state government stands with regard to serving these individuals. the big item here i want poem fa size is no two individuals with

tbi are the same and neither are any two states the same with regard to the extent that they are able to address these needs. the one thing that is the common thread throughout this country is that brain injury is, in fact, the leading cause of disability not only in the state of new jersey, but all across the country, and i think this has not been recognized and not been recognized well, and if you go out on the street and ask folks what's the most significant disability, you get mental retardation, cerebral palsy, autism and all sorts of things, but it is in pack, head injury and head injury is such a disability because it's cradle to grave. it affects people in all age categories and as a result, individuals with this type of disability have to interface with a lot of different governmental programs over their time as a survivor of brain injury and as someone on the panel has already -- someone on the committee has already

mentioned, individuals with brain injuries are, in fact, surviving and they are thriving to the extent that they can get services that they need. in the early '80s, families began advocating for states to provide rehabilitation and other services and there are so many different needs for people with brain injuries. there really are no two individuals with brain injuries who are just the same. we also have the mild, moderate and severe classification of brain injury, which makes it in my experience a little less clearcut and many other forms of disability we can quite clearly state what the extent of the disability is through clinical observation and medical evaluation. this is not true with brain injury. not only that, but there was for a long time that a feeling with people with brain injury can only achieve a certain plateau, a certain level and nothing would happen after that.

research has proven that individuals, even ten years post-brain injuries can make significant improvements when given the right services. about 20 states administer home and community-based services programs for individuals with disabilities that are intended to provide for service in lieu of a more expensive institutional or long-term care. what our big concern at this point is that the systems need to be coordinated and they need to be available to people of all ages. we have found from the cdc who has moved brain injury up to the top of its list of concerns when it was not always at the top of this list. we have found from them that the leading cause right now is falls. falls in individuals over the age of 75, and i think we're all familiar with the baby boomers and where we're headed with that,y myself am one of them and then in addition to that it's in

children under four. so look at the age spectrum of the people suffering from brain injuries throughout the progression of life. it's not just the typical younger adult male, crash victim or the returning service member. it's really a large number of people. and people, the individuals with brain injuries and their families are specifically looking to states for help and support. we would propose in terms of the federal hrsa/t, abobi grants pr to maintain and expand initiatives. upon we would ask that states are given additional flexibility to use funds and other services that states can target their grant requests for populations which they identify for underserved and that the grant move to a formula-funded approach contingent upon the

ability of federal funds to allow each state to preseef a predictable amount of funding. right now the program is competitive in nature. i believe 21 states are receiving grants and the rest of the states are not receiving grants and they're relying totally on their own resources to be able to do that. so just as states are required to coordinate and maximize state and federal programs and resources, nasha supports the federal inter-agency task force to promote federal coordination of all resources. we look forward that time where the task force will invite state holders such as the rights network as well as individuals and tbis and their families to provide input as we develop a national scomplan priority for tbi. thank you. >> chair thanks the gentleman and recognizes dr. winston for five minutes for an opening statement. >> good afternoon.

thank you, chairman upton, chairman pitts, vice chair burgess, ranking member palome and distinguished members of the subcommittee for calling this hearing and inviting me to testify. i am encouraged to see the increased focus on child traumatic brain injury along with emphasis on prevention. i serve as scientific director for the center of injury research and prevention at the children's hospital philadelphia or chop as well as professor of pediatrics at the university of pennsylvania. in addition as being a doctor trained in bioengineer, i am a pediatrician and public health researcher. it is the largest pediatric health care network and home to one of the largest programs in the u.s. i am humbled by the commitment and skill the hospital brings to pediatric injury much of which has enabled by investments from the federal government. i came to care about tbi early

in my training. when i would hear the trauma transport helicopter i felt a sense of dread for the family whose life would be changed by their child's tbi, every day more than 125 of our nation's children are hospitalized or die from tbi. car crashes, sports, falls and child abuse are the likely causes, largely preventable events, a great cause to families or to society. annually estimated tbi costs are more than $29 billion for children who die and $53 billion for those who are hospitalized. therefore, as a nation, i propose that our primary success metric should be annual reductions in pediatric traumatic brain injuries to reduce the tbi burden i propose three priority areas, one, prevention, two, timely, state-of-the-art acute care and three, optimal recovery.

i hope to demonstrate the importance of research and its translation and professional training and coordinated efforts. together, we can address child tbi so that our children and our grandchildren can reach their full potential. the good news is that we know how to avoid tbi, protect the brain from blows and jolts. prevention is the best medicine. if you get your grandson into a car seat or your daughter's sports league to adopt safe play, you can reduce the chance of tbi. unfortunately, many safety strategies were designed for adults and not for children. let me demonstrate how we can do better. at chop we found that early air bags in cars designed to save adults could fatally injure a child. our research supported efforts by government and industry to improve air bag design, policies and education. and now child air bag deaths are rare. dramatic successes like these

require strong science and collaboration. the national science foundation has provided us with opportunities to work with partners to protect our children's brains in a world designed for adults. research funded by nih, hrsa, and dod, when it comes to tbi child age affects the brain's response to impact and recovery. for example, we now know that infants with severe tbi have the worst prognosis. we also know that when compared to adults, older children with milder tbi recover more slowly with more physical, emotional and cognitive challenges. federal-funded and biomechanics and other foundational research is teaching us why. >> sadly, given the limits of current prevention efforts, tbi will continue. our next level of defense is timely and proficient acute care. over the past decade, the cdc,

hrsa and many others have raised awareness of early recognition response to tbi. children with severe tbi have highly specialized aggressive care and children with more mild tbi require cognitive and physical rest within the first 48 hours. federal investments in basic and translational research are leading to improve strategies for those on the front line, and i suggest taking this to the next step by including industry in our partnerships. >> unfortunately, the reality is that there are limits to current prevention and treatment. this is why recovery is our third line of defense. one of the 15 children that suffers a tbi today could have been your child or mine and they now face the long road ahead to recovery. we need to restore tools and,

hrsa funding enabled innovative partnerships between clinicians and these need to continue. i want to close by looking forward. recently i was selected as a hero by a local elementary school's children because i work to save lives. they too want to save lives, but i worry that their dreams may be stunted. we need to shore up the necessary training and funding opportunities that young people need to become tomorrow's investigators,en venters, innovators and clinicians and pediatric injury. mr. chairman, ranking member palone and subcommittee, as policy members, please know i am grateful for your role in helping to save children's lives. i thank you for inviting me to testify and look forward to answering your questions. as you consider this issue i

want to leave you with one thought. the average medical cost for children hospitalized for tb with i is $40,000. that's a lot of helmets. >> the chair thanks the gentle lady and recognizes dr. ashley for five minutes for an opening statement. >> good afternoon chairman pitts and ranking member -- >> press your button there. yea. >> very good. >> good afternoon, chairman pitts, ranking member palone, and subcommittee, thank you for the opportunity to testify today. i'm mark ashley, president and ceo for the center for neuroskills which has programs in california and texas. i also serve as chairman ameritus of the brain injury association of america which represents the 5.3 million children and adults in the u.s. who have long-term disability as a result of traumatic brain injury. in 1972 my brother steve

sustained a catastrophic brain injury while in the navy. for eight years he lay incontinent, unable to move, unable to speak, communicating through eye blinks only. when i in 1980 i co-founded the centre for neuro skills. after 18 months of intensive rehabilitation, he regained speech, movement in all extremities and was able to feed himself. i hope to provide you today with several key points. the first is traumatic brain injury affects people of all ages and is more prevalent than diagnoses of all cancers in the u.s. there are over 4,000 people who will sustain a brain injury every day in the united states. treatment is very complex and highly specialized. treatment particularly rehabilitation in a post-acute setting is clinically effective and cost advantageous.

there's significant availability to medically necessary health care for patients with traumatic brain injury and research funding is not adequate to match the significance of this public health threat. tbi is not an event or an outcome. it's a catastrophic condition and it's the start of life-long disease processes. the brain's metabolism stabilizes and improves allowing the brain to find and use undamaged alternate pathways to work around and maximize recovery the brain will grow new neurons. in short, it grows new brain. the process is demand induced and is rate limited. it occurs slowly. for children and adolescents, early recovery gives way to later deficits in behavior, new

learning and in skill acquisition. there's not a single pathway or course of treatment for catastrophic traumatic brain injury. instead care is provided across a spectrum of settings including nonhospital based rehabilitation care facilities for less costly treatment. my brother's rehabilitation lasted 18 months. more recently, abc news journalist bob woodruff and congresswoman gabrielle giffords made miraculous recoveries after a year or more of intensive rehabilitation. most patients with moderate brain injuries average 19 days in the hospital and just 26 days or less in post-acute rehabilitative treatment. what surprises most people is today many patients do not

receive complete rehabilitation. they include older patients, minorities, those who have no insurance or who are covered by medicare and medicaid. even many who have insurance. the consequences of this short sided approach include more medical complications, greater permanent disability, job loss, homelessness, impoverishment, suicide and involvement with criminal and juvenile justice system. inadequate treatment leads to lost productivity and greater use of medication, durable medical equipment and long-term care and institutionalization. in contrast, the consequence of adequate medical treatment, that is rehabilitation of sufficient scope, timing and duration, are well documented. but are not well known in the general medical community or among payers, patients or families. proper acute and post-acute

treatment and disease management help to restore maximum levels of function, reduce long-term disability and suffering rather than merely accommodating for it. my company provides post-acute treatment by physicians, licensed therapists and other allied health professionals in assisted living facilities like many other companies. therefore, we're not eligible to be a medicare provider. because we do not have a medicare provider number, we cannot accept private care patients through normal admissions process. currently my company is participating in the va's assisted living traumatic brain injury pilot project. however, we're voluntary supplementing the care paid for by the va with more frequent and intensive therapies because i know that's what our service members need and firmly believe it's what they deserve. tbi can change how you move, talk, think and feel. it can change the length of your

life and its quality. individuals with brain injury and their loved ones are rarely able to advocate for themselves. they rely on policy makers to invest wisely in prevention, treatment including medically necessary rehabilitation and in research. in 2011, $81 million was spent on traumatic brain injury compared to $5.4 billion in cancer. disparity is enormous given the similarity in annual incidents and higher costs associated with brain injury. basic science research and investment research by cdc strongly advocates for more rehabilitation research for children and adults by the natural institute on disability and rehabilitation research. we cannot sacrifice care while

the field works toward a cure. therefore we strongly urge policy makers to move away from time limited orientation grants so that all states and territories can build sustainable infrastructure to address this growing problem. administering treatment at the right time and scope by a well skilled workforce yields significant cost savings in both the public and private sectors and vastly improves outcome and life satisfaction. we hope you will take action leading to better health, enhanced employment and education and more fairness and equality for this vulnerable population. thank you. >> thank you to each of you for your opening statements and we'll now begin the questioning. and i'll recognize myself five minutes for that purpose. dr. strickland, the committee applauds your efforts to convene

an interagency working group to maximize resources and coordinate federal efforts related to traumatic brain injury. would you please review the goals of the working group and what is the role of stake holders within the group and how do they receive public input? >> thank you. the purpose of the federal interagency coordinating council is, as i said in my testimony and statement, is to assist greater collaboration and coordination across the agencies that are working on tbi activities. we want to maximize the activities and we want to minimize duplication of effort. we also want to create a common vision across the multiple programs that are going on not only in hhs but across government around traumatic brain injury, and above all we want to be able to collaborate and leverage each other's

resources. one of the ways that we're doing that is through a clearing house of federal tools. we're hoping and just throwing this out now, we're hoping that we will be able to include tools produced by all of the federal programs in one place that would be accessable to the public and to each other so that we wouldn't duplicate efforts and that we could use our scarce resources to launch out into new areas. >> thank you. dr. winston, we always heard of the plasticity of young brains and their remarkable availability to adapt to the surgical removal of part of the brain. yet in your testimony you mentioned that young brains are actually harmed more than the brains of older individuals. would you elaborate on this difference?

>> yes. children differ from adults emotionally, socially, and these differences affect injury and its recovery. just think about normal children and the amazing changes that occur as your children grow up. think about when you held your baby. think about when you taught your older child how to ride a bike or your teenager how to drive. just as they are different on the outside, their brains are different on the inside. and new research is showing that this fundamental knowledge of the brain and its response to injury is yielding some surprises. we used to think that children were more resilient and their brains were more resilient to impact. let me give you three examples. adult skulls fracture on impact.