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 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 about 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 who suffers a tbi today could have been your child or mine and they now face the long road ahead to recovery. we need to be empowered with the best 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, inventors, innovators and clinicians and pediatric injury. mr. chairman, ranking member palone and members of the 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 tbi 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 members of the subcommittee, thank you for the opportunity to testify today. i'm mark ashley, president and ceo for the center for neuroskills which operates 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 completed my professional training in 1980 i co-founded the center for neuroskills and admitted my brother. after 18 months of intensive rehabilitation, steve 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 new 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. the injury is unpredictable. 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.

in the early weeks after an injury, 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. today, however, 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 that 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, family disfunction, job loss, homelessness, impoverishment, suicide and involvement with

the 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 voluntarily supplementing the care paid for by the va with more frequent and intensive therapies because after 32 years of practice 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, the nih spent $81 million was spent on traumatic brain injury compared to $5.4 billion in cancer.

the disparity is enormous given the similarity in annual the similarity in annual incidents and higher societal costs associated with brain injury. basic science research and investment research by the 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 a 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. >> the chair thanks the gentleman. 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 the 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 in my 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 we're just rolling 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 accessible 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've 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 biomechanically, 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. but in fact, let me give you three examples. adult skulls fracture on impact. infant skulls bend. and when they bend, it presses on the brain and can cause damage. another is that infants have stiffer brains. people used to think that was protective. but in fact they injure at much lower levels of impact and energy. finally some new research that was done by the first research was done by dr. susan margulies at the university of pennsylvania. new research that was done by a doctor at harvard shows that for

mild traumatic brain injury we start to see that there are disabilities that emerge that might not have been thought to be the case and here there's a slight difference. it's the teenagers who have more disability from the same level of mild traumatic brain injury. and i think that this really shows that we're just beginning to truly understand the biomechanics of brains, the biology of what happens in the event of injury and this knowledge and this furthering of our understanding of our scientific foundation is going to help us to come up with better helmets, better prevention strategies and better therapies and i hope better recovery. >> you mention the short-term and long-term effects of brain injury in children. can you have long-term effects without noticing any short-term injury? >> i think that you usually will see something early on but there's some subtle differences. children are continuing to develop as we go forward.

i often talk about children as an unfinished painting, right? we don't know where they're going to go. we don't know what their potential is going to be. so as they get older, there might be need for certain cognitive abilities that weren't needed early on. they'll come through. there was a study that was recently done that showed that at 36 months after traumatic brain injury, children with moderate to severe brain injury had much more function than they did at baseline and that they had no improvement between 24 and 36 months. so this really gives us pause that we don't know enough about how to optimize therapy and optimize recovery but we really need this in order to better inform our future intervention.

>> the chair thanks the gentle lady. >> thank you, mr. chairman. i want to start with mr. ditto. it's my understanding that the treatment of traumatic brain injury is very complex and unlike other diseases. the treatment course has to be tailored for each individual and the outcomes can be variable as well. i realize great importance in inner disciplinary approach toward treatment and management of patients. particularly those with severe diseases may require broad range of services including health care, education, location of rehab and housing and state health departments like yours or like new jersey department of health play a critical role in serving as axis point. can you talk to us about case management and the treatment and can you highlight ways that you've been successful in providing these services in new jersey? >> of course. again, i'm previously from -- >> i know. >> i know. >> i do want to say that it is

very true that one of the most critical services for individuals with brain injury regardless of the age at which the brain injury occurred is the ability to get service coordination and multidisciplinary intervention into the picture because it requires a lot of different folks with a lot of different specialties to be able to help people because no two people as i said before, are alike. so when we look at this, the important element is to have one central coordinating individual and that is usually a case manager that the family and the individual can work with to structure the kind of individualized service package and then follow along. you know, case management isn't successful if you just say to somebody there's a treatment place over here that you can go to that are open on monday and wednesday. you need to not only tell them about it, maybe you need to go

there with them the first time to get them introduced. maybe you need to follow-up. maybe you need to check with the program to see if their attendance has dropped off. you need to have someone who is measuring progress. case managers look at where they start with their clients and they move forward. case management can come from a variety of sources. the title 5 maternal and child health program provides states with funds to provide case management to children with diseases and disabilities and i can tell you in the state of new jersey, it's highly effective program that works very well in terms of providing that level of intervention helping families negotiate. it is harder in the adult system for us to offer those kinds of services because there are not entitlement programs that we can turn to. with an individual with onset brain injury, states have developed things like state trust funds. we did that in new jersey.

vehicle registration, those in new jersey know that in new jersey we register our cars every year and pay a fee and we got them to take a dollar of that fee and put it aside into a trust fund and we use that trust fund money to help support education and outreach services. the most requested service in the state of new jersey by people of all ages from children through 99-year-old people was case management. someone to help them negotiate and navigate the system and somebody with sufficient training to be able to understand the subtle differences between people with brain injury. if you see someone who has had a severe brain injury and they're in a wheelchair, you obviously see they have physical, you know, impacts for it. so often for people with brain injury, they don't look any different than you and i do. they have the problems of

dysfunction. they have the problem of impulsivity. aggressiveness. they have impaired processes im that lead to social problems, and one of the things states are very concerned about is a lot of individuals who have brain injuries end up in our justice system. end up in our prisons. and i hate to tell you, but it's true, they end up in state psychiatric hospitals and frankly sate psychiatric hospital is not a place for an individual with brain injuries to be. i spent a good deal of my -- the last ten years of my professional career trying to get people out of inappropriate placements and back into the community. but the funding for this is very, very difficult. there is more funding available on the child side than there is on the adult side. we are trying to tap into the aging piece of this and get more help from the administration on aging, but it comes back to the

issue of really seeing that this is a lifelong disability that impacts people of all ages and we have to look carefully, what systems have already been put in place out there that we can knit together to provide a comprehensive service? and even if we can't afford to buy all the treatment we need for people, at least if we can give them case management services and get them somebody who can help to coordinate their medical care with their rehabilitation care, with their education program, with community supports and services, can make a tremendous difference. and, again, as i say, when i look back on our fund in new jersey, which was very successful, the most frequently requested service was case management. beyond all others. and we offered a very broad range of home modifications and, you know, treatment services, and all sorts of things and people opted -- the thing that was most opted for was case management. it's not equal across the country. you go from state to state.

that's the luxury of working in a national organization like i do. when you go from state to state, there's such a big variation in what's available to people. and really, this is a lifelong disability from which people, in my view, and i know not everyone likes this term, but they survi survive. i'm not sure they recover. they survive, they learn per pence toir strategies. they learn how to cope with the world, they learn how to make their way and improve their social interaction and minimize hopefully their involvement with the legal system. but it is a lifelong disability. you don't wake up one day and say, oh, i don't have a brain injury any longer and everything's back to normal and i'm perfectly fine. it's there forever. >> thank you. >> thanks. recognize the vice chairman of the committee, dr. burgess. five minutes for questions. >> thank you very much. dr. winston, along that line, do you have a sense as to clearly

states are doing things differently among the several states. do you have a sense as to whether or not there is any coordination at the state level as toward adopting the best practices, what's working in one location might be transferable to another location. is there communication along these lines? and are states looking at what programs are working in other areas? and then i want to go to dr. strickland as to what the federal oversight of that is. do you get a sense there are states that are doing it right and states that show room for improvement? >> i have to say that it's not my expertise to look at what states are doing, so i can't really give you a full answer. i can speak to one program that hersa funded that's in pennsylvania that might be of help to you. in pennsylvania, there is this group, there's a program that's called brain steps, to try to reintegrate children into the school system, because understand, that is the job of

children. it's to go to school. and to get back in there. and now every school district in pennsylvania has been trained in traumatic brain injury and there's coordination between these school districts and the local health care teams. so i think that there are some models -- i was hearing hem f i from the panel members here. we need to build the collaboration, and, again, i want to reiterate, it's not just within the public sector. it's also with the private sector. it's really important to keep them together. so i would like to actually give my time over to dr. strickland. >> let me just ask you one follow-up on that before we leave it. then what type of coordination do you see between the schools and department of education in this regard? because obviously the schools may become the de facto rehabilitation center for children with brain injury. how do they integrate with the

state departments, education or the federal department of education? >> i can tell you that one of the main things i do for children, as a practicing pediatrician for children with special health care needs is to try to get them into an individualized educational plan, to get them the medical care that they need at the schools. and this does require tremendous amount of coordination. >> how receptive is the department of education? the state department of education to those? >> well, i -- you know, they're limited by their budgets as well. you know, clearly we have challenges to fund our public education system, but i can tell you that that is a part where the state and the school districts are really trying to make this better for children. but it is very challenging thing to provide the kind of care that these children need day in and day out at school. they often need wraparound services with someone who's there with them in school to deal with their emotional

outbursts, to deal with other things. so it's a really challenging situation. >> it sure it. dr. strickland, let me just ask you a question. total budget for hersa in the president's fiscal year budget for this year? >> $9.76 -- >> $9.76 --? >> million. >> for the total of hersa? >> i'd have to get back to you on that. you mean of all related activities? everything related? i would have to check with our colleagues and see. but through the traumatic brain injury act, our program receives -- >> within your division of the agency, the budget is -- no, no, the total hersa budget is an excessive -- >> for everything? >> yes. >> yes, $700 million. >> did the president's request increase last year to this year? >> yes. >> about how much? for the total of hersa.

>> i don't remember. >> the figure i've been given is $228 million. does that sound about right? >> i would have to get back with you. >> and then we're spending on traumatic brain injury how much? >> $9.76 million. >> okay. that just seems thin given the total hersa budget, does it not? >> we do a lot with the resources that we have. we can always do more with more. >> it seems thin given the requested increase. now, i grant you, congress is supposed to do the budget, congress does the appropriations. so there's always a disconnect between what the president's request is and what the actual dollars are, but it just almost seems out of line. it seems out of kilter there. is it because you're not asking for enough? i mean, frank gunner, he loves to give you money, so ask him. he'll do it. he'll write the check, himself.

i've seen him do it in this committee when he was chairman, subcommittee chairman. well, i guess my point is, it seems like there is a disconnect between the level of funding for traumatic brain injury and hersa and all the other many things that hersa does, however great and wonderful they are. and i'm just asking, as we go through this, that's something we might spend a little time and a little attention to see if there's places where, perhaps, other funds could be freed up in other areas and delivered to this very pressing need. thank you, mr. chairman, for the indulgen indulgence. i'll yield back. >> the chair thanks the gentleman. the other members seemed to have stepped out. we'll begin round two of questioning. dr. strickland, the gao just found that nih, dod, and va each lack comprehensive information on health research funded by the other agencies.

gao raised concerns about the potential for unnecessary duplication and urged the agencies to find ways to coordinate their efforts. question, how is tbi research that is conducted by nih, dod, and va, the va, coordinated among the three agencies? >> well, i would reiterate that both dod and va are members of the newly established interagency coordinating council. we'll have our second meeting actually at the end of this week. but specifically, nih has partnered with the dod in building a central federal interagency brain injury research database that will allow access to researchers across the multitude of research done by both agencies. this is important, because that helps us establish better