answering your questions. as you consider this, i want to leave you with one thought. the average medical costs for children hospitalized for tbi is $40,000. that's a lot of helmets. >> the chair thanks the gentle lady and recognition dr. ashley for five minutes for an opening statement. >> good afternoon, chairman. >> press your button there. >> there we go. good afternoon, chairman, ranking members and members of the subcommittee. thank you for the opportunity to testify today. ooi name is dr. mark ashley. i'm the president and ceo of centre of neuro skills. i serve the brain association of america which represents 5.3 million children and adults in the u.s. with long-term disability as a result of

traumatic brain injury. in 972, my brother, steve, sustained a catastrophic brain injury while in the navy. for eight years he laid unable to move, unable to speak, communicate through eye blinks only. in 1980 i co-founded the centre for neuro skills. after 18 months of 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 costed advantageous. it is 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 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 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. 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 of more of rehabilitation. most patients with moderate brain injuries average 19 days in the hospital and just 26 days or less in post-acute rehapp

rehabilitative treatment. 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 shortsided approach include more medical complications, greater disability, job loss, homelessness, impoverishment, suicide and involvement with criminal and juvenile justice system. 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 helps 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 therapist 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 medical 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. we're voluntary supplementing the care paid for by the va with more frequent and intensive therapies because i know that 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 on traumatic brain injury compared to $5.4 billion in cancer. disparity is enormous given the similarity in annual incidents and high costs associated with brain injury. basic science research and investment 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 to find 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. 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, enhance employment and education and more fairness and quality for this vulnerable population. thank you. >> thank you to each of you for your opening statements begin t. and i'll recognize myself five minutes for that purpose.

dr. strickland, the committee applauds your efforts to convene an inter agency working group to 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 inter agency 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 experts. 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 schools. 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 assessable 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 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 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. there's fracture on impact.

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 at the university of pennsylvania. new research that was done by dr. fred 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. teenagers 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 brain, 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 forth. 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. a study 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 outcome 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 line of scrimmage new jersey department of health play a critical role in serving as an 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 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. 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 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 in the adult system for us to offer those kinds of services because there are not entitlement programs we can turn to. with an individual with onset brain injury, states have developed 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, educate 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 say 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 impulseivity. 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, it's true, they end up in state

psychiatric hospitals and frankly state psychiatric hospital is not place for people 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. 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 at 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, 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 and how to cope with

the world. they learn how to make their way and improve their social interaction and minimize hopefully 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, 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 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 sect 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. >> 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 chithin

given the total hrsa budget, does it not? >> we do a lot with what we have. >> it seems thin, congress is supposed to do the budget and appropriations so is there is always a disconnect between what the president's request is and what the 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 vry pressing need. thanks, mr. dull engines of, i'll field 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 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. allow excess researchers across the multitude of research done by both agencies. this is important, pause because that helps us establish bettert better diagnostic criteria for mild tbi, predictive markers for dimens, 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 goingto 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 -- 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 they're not ready to just go back into their communities and live. they need an environment, a therapeutic environment. no, s 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'