infants 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 margalise at the university of pennsylvania. new research that was done by a doctor at harvard shows that for mild traumatic brain injury we see 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. 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. 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. >> 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 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 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 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 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 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 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 that lead to social problems. one of the things that states are very concerned about is a lot of individuals who have brain injuries end up in our justice system. end up in our prison. and i hate to tell you, but it's true, they end up in state psychiatric hospitals and frankly state psychiatric

hospital is not place for an individual with brain injuries to be. i spent 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's more funding available on the child side than there is on the adult side. we are trying to tap into the ageing piece of this and get more help from the administration on ageing, but it comes back to the issue of really seeing that this is a life-long 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 support and services can make a tremendous difference. again, as i say, when i look back on our fund in new jersey, which was successful, the most frequently requested service was case management. beyond all others. we offered a very broad range of home modifications and treatment services and all sorts of things and people said the thing most opted for was case management. it's not equal across the country. you go from state to state and 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 life-long disability from which people, in my view -- i know not everyone likes this term. they survive. i'm not sure they recover. they survive. they learn compensatory

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 just wake up one day and say oh, i don't have a brain injury any longer, everything is back to normal, and i'm perfectly fine. it's there forever. >> thank you. >> i recognize the vice chairman of the committee, dr. burgess. >> thank you. 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 to adopting the best practices, what's working in one location might be transferable to another location, is there communication along these lines, are states looking at what programs are working and -- in other areas, and then i want to go to go to dr. strickland as to what the federal oversight of that is. but do you get a sense there are states that are doing it right,

and states that showroom 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 are -- there is coordination between these school districts and the local health care teams. so i think that there are some models -- i was hearing them 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. >> one follow-up on that before we leave it. >> yes. >> what type of coordination do you see between the schools and the 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 of education or the federal department of education? >> i can tell you that one of the main things i do for children with -- 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. >> and how receptive is the department of education, the state department of education, to those?

>> well, you know, they're limited by their budgets as well. 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 wrap-around services with someone who is there with them in school to deal with their emotional outbursts, to deal with other things. so it's a really challenging situation. >> well, it sure is. of dr. strickland, let me ask you a question, total budget for hrsa in the president's fiscal year budget for this year? >> 9.76. >> 9.76? >> million. >> for the total of hrsa? >> i would have to get back with you on that. you mean of all related activities? >> yeah. >> anything 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 -- >> $9.76 -- >> no, no. the total hrsa budget, in excess of $8 billion, is it not? >> for everything? >> yes. >> oh, yes, $700 million. >> did the president's request increase last year to this year? >> yes. >> about how much? for the total of hrsa. >> i don't remember. >> the figure i've been given is about $228 million. does that sound right? >> i would have to get back with you. >> and then we're spending on traumatic brain injury how much? >> $9.76 million. >> okay. i mean, that just seems thin, given the total hrsa budget, does it not?

>> we do a lot with the resources we have. >> it seems thin, congress is supposed to do the budget and congress does the appropriations so is there is always a disconnect between what the president's request is and what the actual dollars are. but it almost seems out of line, out of kilter there. is it because you're not asking for enough? i mean, frank, 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. i guess my point is, it seems like there is a disconnect between the level of funding for traumatic brain injury at hrsa and all of the other many things that hrsa does, however great or wonderful they are. and i'm just asking as we go through this, that's something where 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 -- this very pressing need. thanks, mr. chairman, for the indulgence, i'll yield back. >> the other members seem to have stepped out, so we'll begin round two of questioning. dr. strickland, the gao just find that nhi lacked 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 inner agency 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 excess to researchers across the multitude of research done by both agencies. this is important, pause because that helps us establish better tbi classification systems, better diagnostic criteria for mild tbi, predictive markers for dimensha, and a host of other activities that can only really be achieved through that type of collaboration. so the federal interagency traumatic brain injury research database, i think, is going to be a real facilitator. >> so you're working to improve access to databases. >> right. >> and electronic information on the funded research.

mr. ditho, how are the states working with returning service members or veterans, and how do states coordinate these services with the veterans' organizations? >> well, actually, the states have had an interesting opportunity over the last several years. the veterans administration actually established a program in conjunction with the department of health and human services that is called consumer directed home and community-based veterans services. and it was modeled after a program that was done that -- in a number of states in which individuals were given an individual budget, and then allowed to decide how to use that money to meet their specific needs. and so the states have gotten involved, and it's a slow

process, but it's taking off. in getting involved in understanding that the returning service people, once they have had the acute care and the -- you know, they go through the acute rehabilitation phase through veterans' affairs, they then need sort of a stepdown after that. they're not ready to just go back into their communities and live. they need an environment, a therapeutic environment not as intense as intense physical rehab is, but something that is more a day to day living kind of getting adjusted program. and so i think we're making headway with that, because before, to be perfectly blunt, in most states the department of defense was placing individuals in long-term care facilities and nursing homes. and so we're getting away from that. i think also the states are reaching out to their veterans' administration agencies to network with them and to become

involved with them. and to open up the doors to what the state may have to offer in terms of helping out with this. many times, veterans -- employees are just not aware of the scope of brain injury programs. and frankly, because this has become the signature injury of this war, this is the first time that people started looking about -- at these other programs that were out there, dealing with people who had acquired their brain injuries in a different way other than combat. >> thank you. dr. ashley, you described the variability and post acute care. what are the factors that cause this variability, and also would you describe the difference in rehabilitation of children versus adults. >> well, yes, sir. the first part of your question is what accounts for the variability. it begins with a lack of understanding of the condition itself. as i mentioned earlier, in the general medical community and in

the payer community, there is not good understanding of the neurophysiologic of plasticity as a recovery mechanism for brain injury. it used to be thought what you see at six months is what you get. today we understand that what we do in the environment by creating appropriately structured demand, reprograms existing cells to take over function, or induces growth in the brain for new development of -- or excuse me, development of new structures to take on function. so without the proper knowledge in the medical community or in the payer community that underlies this, it's treated as though it's a broken bone. broken bone takes six weeks to heal, and we get two weeks or so in rehabilitation for the brain. however appropriate. we also have rehabilitation policy in insurance plans that

was designed for musculoskeletal and orthopedic rehabilitation. four decades ago, when it first came into being. it has not morphed into covering the rehabilitation needs that we now see with surviving neurologic injuries. so we spend a great deal of money to keep a person alive, and we basically spend no money to give them any quality of life afterward. and the injustice here is that we actually have the ability to do it. so we're simply withholding this care, calling it something other than medical treatment, and constraining it in policy by either licenser restriction or by benefit restriction, one or both. i apologize. the second part of your question. the difference between children and adults. >> yeah. >> it's -- euphemistically, it's said that children are not little adults. i think dr. winston touched on it very nicely when she

indicated that the pathophysiology of a child's train is substantially altered with an injury, and differs substantially from adults. one of the areas that we have to really investigate has to do with the onset of lifelong disease processes that arise from the changes in the brain metabolically and neuro physiologically. once altered, it's difficult to know if these changes actually revert to normal or not. there's great suspicion, for example, in pediatric injury, that neuroendocrin abnormalities relate to further mature appropriately. as a consequence, we have to call into question the role of even a cult brain injury, much less more obvious brain injury and conditions that might lead to dyslexia, agraphia, confidentiality difficulties with reading, writing, math and so on. that we have bundled under

learning disabilities as an example. further, as we see the difference in children, we have medication differences, pharmacologic interventions that are not effective with children or put children at risk that can be used in adults. and then, of course, we have the real social dilemma in terms of how we treat these children. it's difficult to amass them in a single environment and take them out of their cultural surroundings, family, school, et cetera. and so unfortunately, because of the vagaries of rehabilitation coverage, the schools do end up being the de facto rehabilitation setting. it's not what they're trained for, it's not what they're prepared for. they certainly have stepped up and tried to address the problem. but the medical rehabilitation of children really ought to be left to medical professionals. >> mr. chair, thanks. i recognize the ranking member for five minutes for questions.

>> thank you, mr. chairman. i wanted to ask dr. winston, you described how the majority of research is focused on traumatic brain injury for adults and you mentioned the need for focus research investments to inform new safety products, programs and policies that will better produce and reduce the severity among children. it seems you believe there is an possibility role for nih and other federal agencies and congress to build on existing research on pediatric brain injury. but could you just share your perspective on specific pediatric research questions that could be further or should be further explored? >> thank you, very much for asking that question. i think that we need to build up our scientific foundation so that we can improve and be more efficient in how we deliver our care. i like to think about it in five categories. first, to prevent -- to improve the prevention strategies, we

need to understand the who, what, where, when, how and why of pediatric injury. we need to -- using bio mechanics, behavioral science, epidemiology and the like. we need to improve our methods and measures for studying, diagnosing and following the course of tbi. bio markers are also important. we need to conduct -- work to know what works and what doesn't. what -- how to improve on therapies that are currently done. how to deliver it in the best ways possible. we need to know how to get state of the art to the field, to the front line. and we need to support innovation research for the development of new safety products, bio markers and therapeutics, and we must not forget to train our next generation to be our scientists of pediatric injury. there are two resources that i call the committee's attention to that would be able to give you more complete answers. trying to be brief here.

the first is a very exciting initiative that i was part of -- actually, both i was part of, that will be released by the cdc i think next month. and it's a national action plan for child injury prevention. it provides action steps in research, data, education, health systems, communication, to prevent child injuries from occurring. it also seeks to incorporate child injury prevention into existing systems and strategies at the national, state and local level. a second very exciting initiative is the national institute of child health and development. interested in child injury. and i -- i applaud leadership for their interest in this. the society for the advancement of violence and injury research under the direction of the president, dr. fred rivera, tapped into experts in the field and enumerated important next steps in child injury research.

and i recommend that you get ahold of that as well. so from a personal perspective, there's a range, a wide range, of what we need to do. but i think that we can prioritize and we should. >> all right. thank you very much. let me ask -- i know we're running out of time again. but dr. ashley, in your testimony, i'm struck by the continuing care that's needed for people with traumatic brain injury. and you stated for those americans who experience moderate to severe traumatic brain injury, the recovery often extends beyond hospitalization and requires rehab. you also testified it's the start of a disease -- causative and disease excelerative process. can you elaborate the extent they're lifelong conditions? if you want to talk about it a little more. >> yes, sir. the difficulty that we see, of course, is that anything and everything that a human being does is mediated by the brain. so when the brain is injured,

the potential for impacting any and every organ system in the body and its function exists. at the most basic level, when a brain cell is injured, and you have 100 billion of them, that begins a neurodegenerative process, the end of which we're not sure exists. in fact, a few hours after an injury to the brain we'll see inflammatory processes around the body initiated. in about a third of all individuals, late in life we'll see those same processes reinitiate. so we change how the brain's bio chemistry works. the brain functions in various degrees of bio energetic crisis following a brain injury, almost indefinitely. as a result, what happens is the metabolic demand creates tremendous stress within the system that triggers a number of

degenerative processes. so we're beginning to reconsider a lifelong diseases -- or diseases we've known lifelong as parkinson's, lot row sclerosis. huntingtons and so on as lipid metabolic disorders that may have an origin after a brain injury. you see this made manifest over retired athletes with repetitive concussions from the sports legacy institute and the work being done at boston university on the posthumously donated brains of retired professional athletes. we see the changes in the brain and a condition called chronic traumatic encephalopathy that's been identified as a single example of these lifelong conditions and progressive conditions. >> thank you. thank you, mr. chairman.