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Transcript for June 2013 Brown Bag

>> Hey Jenny.

>> Hey.

>> Hey Jenny. Hi.

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>> All right. So welcome everyone. Good to see so many students here in particular. Glad you guys are taking some time off from your summers to be here. And Mark and I are going to talk about a study that we've been working on probably what, four years now? Three years?

>> Three.

>> Yeah. And it's with a number of studies we've done with the Brain Injury Association of America, which we'll talk about is really the largest advocacy organization for brain injury in the United States and we did a presentation on this particular element of our data where we looked at professional services and unmet needs. And we try to talk about how they have particular involvements for veterans, you know, and we know that so many veterans are coming back from Iraq and Afghanistan, many with traumatic brain injury and one of the difficulties is that the VA is very much overwhelmed with the amount of people they have coming back and one of the consequences is that people with brain injuries and their families are going to rely on community resources even if they have military connections and veteran's benefits. So we'll talk about perceptions from the Brain Injury Association of America because they're really on the front lines of seeing what are the needs in the community. You know, they work with families, they work with individuals with brain injuries on a daily basis and so they can offer a very unique perspective. And then we'll talk about what are the implications of what they talk about again for veterans coming back with brain injuries. Next slide. So when we started this study, we had some initial general research questions and it eventually got translated into a veteran focus from a project that Mark and I worked on where we did a presentation to something called the Family Military Research Institute which is part of Purdue University and that international symposium of different presenters talking about different elements of how families are impacted in general if they have military or veteran connections and so this symposium talked about family issues from a number of points of view and we were invited to come in and talk about from a disability point of view, how are families connected if they have a military or veteran connection. So what we tried to do with this data is talking about this from a general community-based perspective and again as I mentioned before, connecting this to looking at how this may impact veterans. So in some ways we had to make a number of inferences of what we thought might be happening because when we started this study, we actually didn't have veterans or military in mind in particular. But again it kind of translated to that over time. So the basic questions that we had is we wanted to know what are the common kinds of rehabilitation needs faced by family caregivers and to what extent are these needs met? And we're going to talk about instrument called a Family Needs Questionnaire which is an instrument that comes from Virginia Commonwealth University. They do a lot of research on families and brain injury and they created this instrument that has six different domains of rehabilitation needs and this is an instrument that I used in my dissertation on adult siblings and we translated this to be answered by the Brain Injury Association of America so we did some adaptation of the instrument with the permission of the developers of this instrument and we'll talk about how did it actually play out? What were some of the findings of this? We're going to talk about what kinds of supportive services do the Brain Injury Association of America state affiliates provide the family caregivers of people with traumatic brain injury and if you're familiar with the San Diego Brain Injury Foundation which is downstairs in this building, it's similar to what the state organizations do in terms of working with families. They -- you know in many cases if insurance is not available or the family doesn't have any financial resources of their own, these state affiliates really are the only resource that families may have in terms of getting connected to professionals, finding out what's available in their communities, having access to support groups, things like that. These brain injury association affiliates do a lot for families and it was part of the idea when Mark and I first talked about how do we get a broad based national perspective on brain injury that we should talk to this organization because of this front line kind of perspective. And then we're going to talk about what kind of challenges do family caregivers of persons with brain injuries experience and how does that fit into our findings?

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>> I'm just going to add something while you flip your page. You know, one of the things that kind of looking at previous literature that's been done -- kind of previous research that's been done in this area, some of it -- a lot of it with Chuck's name on it the perspectives have been family members themselves or persons with disabilities themselves. And we wanted to kind of look at family needs from the perspective of folks who work with a lot of families where brain injury is a part of family and that's where this kind of idea of approaching the BIAA folks came from. We want to kind of see what their perspectives are because they work with a broad swath, you know, broad range of families -- of folks who are contending with brain injury and we want to look at how their perspective sort of lines up or doesn't line up with, you know, families or individuals who are talking about their individual perspective.

>> So again, we use the Family Needs Questionnaire which we'll talk about more in detail. A series of open ended questions where we did qualitative data analysis. And then we came up basically with a laundry list of different things we thought the Brain Injury Association of America were providing or different kinds of community- based resources that hopefully they could connect people to and we asked them to talk about in their particular states, does your state have this service? Like one example is neuropsychological services, do they have that kind of support? And we also wanted to know if they have it, is it adequate? So in many cases we'll talk about the fact that these services were there technically but they really weren't adequate to meet the needs of the families they were serving and we got the endorsement of the national organization of the Brain Injury Association of America which is really key in doing this. Organizationally how it works is there's a national organization and there's 43 state affiliates of the national organization and they have an organizational relationship to the national organization in terms of things like branding and marketing and getting an idea what each state affiliate should do but the state affiliates are also independent in a variety of ways and can do a lot of things. They really meet the local needs of their states and their city. So we worked on this for quite a while. Probably 8 or 9 months or so.

>> This is the permission part, yeah.

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>> Yeah. Get their permission to get the endorsement and we'd go to the person who was in the national organization, her role is that she is the person who makes the connections to all the state affiliates from the national organization and unfortunately when we were in the middle of trying to get the endorsement and permission, she resigned and a new person came on so we had to start from scratch but eventually we got to that point and it was really essential. We probably couldn't have done the study without having a buy in, you know, to what we're doing.

>> Is it safe to say -- Chuck, you know a little bit more about this than I do. A lot of these entities, the affiliates existed before the BIAA kind of went national in scope and so they had been providing services to families, individuals for a while beforehand and then they decided to kind of join up with the BIAA and they had to change their name or at least add something to their name to indicate that they were affiliated with BIAA.

>> Like California.

>> Um-hmm.

>> You know, California became a state affiliate three years ago and they used to be known as the California Brain Injury Association and now they're the Brain Injury Association of California for this marketing thing where they're now in sync with what the national organization calls themselves. So [inaudible] next slide. A little bit of background in brain injury. You know, very common type of disability and it's often referred to as a silent epidemic because it's so common but you know, we don't often talk a lot about it. Although that's changing to some degree with our veteran population of the focus is [inaudible] but also you know, NFL players, football players, different athletes where, you know, I think people are becoming more aware how common this injury is and what it means for people. It's estimated in the United States is around 1.7 million people with that experience brain injury each year and a variety of levels of injury but overall around 1.7 million. In terms of those who may have functional impairments where they're going to have to receive some kind of assistance and they may have some challenges in trying to work or live independently is around 70 to 90,000 persons. This next point is relevant to our study, especially relevant to our study, in that most support for this type of injury is available at the acute or inpatient level so once people get out of the inpatient unit there's not a lot of support for them long term for them in the community. Some of that is just how insurance is funded and the fact that when people get injured, they may not have a lot of personal resources or may not have insurance of their own to cover the costs long term. Like one example of this if you followed the story of Bryan Stow who is the person who was attacked at a Dodgers game, he was a Giants fan who came to Dodger Stadium and watch the Dodgers versus the Giants. This was, I think, three years ago. He was severely beaten and almost died and he's been in the Center for Neuro Skills which is -- well no inpatient unit in Bakersfield and his insurance just ran out yesterday. He was sent back home. It really was against his parent's wishes or his family's wishes because he was still benefiting from that support but it was simply an insurance issue. They couldn't -- they couldn't pay for the costs of that care anymore. So we have a lot -- this is the situation that's repeated basically throughout the United States where you know, once you leave that kind of facility, you know, you don't have a lot of support. Most individuals and families rely to some extent on public resources when they're available and one of the challenge -- another one of the challenges, you know, we'll talk about is that from state to state there's a lot of variability so if you're in one state versus another state it may be a totally different experience as far as what you have access to with long term community support, vocational assistance, independent living assistance all those things. May be a totally different experience based on where you live. And that's this last one, we have a lot of variation state to state but also from city to city. So it's really, you know, it's really kind of a luck of the draw of where you happen to be living at the time you're injured.

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>> Just to kind of piggy back on that. Some of the contributors to the state to state variation would be things like, with the state allocations, right?

>> Um-hmm.

>> With the states would allocate. Medicaid wavers to contribute, right to the state to state variations. What else?

>> Some states have special funds set up for speeding tickets and DUIs if you -- someone gets a DUI, it would be a fine of the state. Some states have a set up where the funds or a percentage of the funds go to pay for TBI supportive services. Variety of different things like that. Yeah.

>>

[ Inaudible ]

>> Question was, what does California have? Not a lot. There's a very small Medicaid waver program that was passed, I think, two years ago but it only covers to this point around 100 people throughout the state and you know, this is another one of these examples where you may not have a lot of support and luckily for people here in San Diego, the San Diego Brain Injury Foundation is a very, you know, viable type of support for people that do a lot of different work so for people here, they may have a very different experience than, let's say like in Fresno where I used to work. There's not much of anything there and so it's going to be, you know, it's going to be a very different experience, you know, here in California but over all in California long term we don't have a lot. It's really -- there's a lot lacking. So what -- in terms of what we know following this type of injury and general for families, the literature is very clear about the fact that there's a lot of negative outcomes for the family. Elevated depression, elevated burden, anxiety and this often just comes back to this point we've been kind of making all the way through which is a lack of long term supportive services. You know, it's not that families don't want to provide this care, they do but they're often left to themselves to take on care that's extremely stressful and burdensome at times and can take over their entire life. So we see a lot of negative outcomes. As opposed to other disability populations where family care giving outcomes can actually -- negative outcomes can reduce over time, the long term negative outcomes are really consistent over time. So there's a cumulative long term negative impact on the caregiver in terms of the physical and mental health and they really pay a consequence of this over the course of their lifetime. Families provide the bulk of care giving responsibilities. One factor is at times they make a conscious choice to do this, they feel that if a family member has an injury like this it's [inaudible] responsibility to take on this care but again back to our central point, they often do this because there's no other option. Their family member has to rely on them, you know, for this care. And the care giving is often provided by females, wives and parents whereas males in the family don't take on as much of the day-to-day care giving responsibilities and parents may face like a type of extended parenthood because -- especially if a person with a brain injury has not been married, doesn't have any dependents and parents are really the primary source in the family for that support.

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>> When we presented this to the Military Family Research Institute we really needed to tie it into kind of the veteran experience of brain injury so in addition to our own data, we borrowed some data from other sources to kind of illustrate the magnitude of the impact and in this case we got this from -- it's around 2011 data from the Armed Forces Health Surveillance System and it kind of -- this is diagnoses of brain injury in forces worldwide. I think people first tend to go to -- okay these all happened in Iraq and Afghanistan but they really are broader than that. Somebody has a, you know, motor vehicle accident here that would, you know, on base or something like that or in training or something like that, that would show up. And I think one of the -- kind of the real key things to zoom in on is pretty obvious is just that trend of increasing instance -- incidence of brain injury among the forces starting in 2000 and going all the way up to the graph ends in 2010, there's a little bit of 2011 data. That pattern continues continually. So one slight decrease in 2005 but the over all pattern is increasing. If you add all this up between 2000 -- and roughly half way through 2011 about 220,000 brain injuries just in the U.S. forces alone. So that's not the general population, that's just forces. And this alone -- this figure alone probably underestimates a total number. There's kind of a reluctance to get diagnosed, talking with folks in the military, you know, concern about how it may affect their future career so if they can keep it under wraps then there may be less of an impact on my career, my career trajectory that kind of thing. So this is just kind of the documented number of cases, the true number of cases is probably higher than that and maybe quite a bit.

>> You know, I think if we're looking at the brain injuries that are related to combat induced brain injury, there's a lot of complications also. I think maybe more so compared to the civilian population. You often have what the military refers to as poly trauma injuries. So you may have things like PTSD, post-traumatic stress disorders are very commonly. Code [phonetic] cystine brain injury. There's burns so it can be spinal crane injuries just a variety of issues that go, you know, with this type of occurrence with the brain injury. Related to, you know blast injuries provided by explosive devices where these are just, you know heinous types of weapons where they do things like they -- they have ball bearings and screws and nails and they have coated with poisons and toxins and all these things that, you know, does incredible damage to the body. So in addition just to the blast that caused the brain injury the veteran may have all these additional things that they're dealing with which adds to the complexity of their care. So with the military, one of -- we still have some implications and when we talk about future research, this is personally an area I want to do more comparisons with the civilian population. My research it looks at primarily in family care giving following brain injury. With the military, compared to the civilian population, it has a lot more places really long term to support people with brain injuries. They have for example, the Polytrauma Network System and throughout the United States there's four large hospitals that provide a comprehensive set of inpatient/outpatient services to people, veterans with poly trauma injuries and brain injuries, you know is one of the key areas that they focus on. In addition to that, there's a number of satellite poly trauma centers throughout the United States where they can provide case coordination and outpatient services and things like neuropsychological services. All these things that we'll talk about later that in the civilian population are really lacking in a lot of areas. The military has a Polytrauma Network System that really is doing a lot of great work in that area. Veterans have health care through the Armed Forces, Department of Veterans Affairs. There are a variety of non-government organizations that are in focused organizations here in San Diego one example that would be the Veteran's Village and these things called -- an organization called [inaudible] shares and all these different organizations that are non-profit agencies that really tried to meet the existing, you know, gaps and services that veterans have. Other things that Mark and I looked at just in talking about this and talking to veterans in other context is that there's sometimes a reluctance to use the VA. There may be a negative perception about the VA or just not wanting to work with them for a variety of reasons. These non-government agencies can really fit a gap in a lot of ways for those veterans that don't want to work with the VA. Veteran's also have access to a variety of income support programs. They have specialized locational rehabilitation, which some of our students are interested in going into and a number of our graduates do work for the VA in that context and then there's a number of retirement and disability payment systems that you know, aren't available to persons with brain injury in the civilian population. So, you know, I think if veterans through the military and veteran system potentially have a lot that they can draw from that again, that the civilian population doesn't have.

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>> Just a little bit of background on BIAA because those are the folks that we talked to in the study who provided the data that we'll kind of see later on. They're the oldest and largest brain injury advocacy organization in the U.S. I think they're working on trying to enhance their role to kind of be seen as kind of the first place folks would go if they need information on brain injury. Kind of the first stop for supporting families with brain injury that are involved with kind of policies -- trying to get more involved in kind of policy legislation if they can change through those directions. Not every state has affiliate so there's only 43. There are several states that don't have one and I think both the size and scope of the affiliates vary quite a bit. You know, in California you have state kind of [inaudible] state organization and then a variety of smaller organizations that are affiliated with it. In some states one little office, small number of people. So there's a considerable degree of variation there. You have anything to add?

>> So with our survey, as we mentioned before, we did a number of different areas of data collection outside of what we're talking about for today but in general who we had were 28 to the 43 state affiliates took part in the study and most were paid staff, 26 out of the 28 were staff. Most commonly like executive directors and in two cases we had members of the board of directors to answer the responses. And one thing to keep in mind with this is that it puts some of the support in a certain context. So it is great that people have access to this kind of support from the brain injury association but it's not always the case if you have people with specialized training in brain injury who are providing the support and there's quite a bit of variability among the state affiliates with that. So you may have one state where you've got somebody who, you know, has a degree and specialized training in brain injury and you have another situation where somebody maybe has a personal connection to brain injury. They may not have a lot of special training so the quality of what may be provided could be a wide variety. The average years in the organization in assistance is 24.1 years so [inaudible] have been around for quite a while on average. And then average years affiliated with BIAA, 19.8 years, which as Mark mentioned, there's a number of affiliates who have been kind of doing their own thing prior to their affiliation with the Brain Injury Association of America such as Cal Poly affiliate. These are pretty small organizations when we think about these are statewide types of groups. So on average the average number of full time staff was 6.9 which is quite a daunting task when you're trying to cover an entire state.

>> Yeah.

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>> In California there's only one full time staff member and then if there's a board -- Board of Directors that does a variety of things. Try to imagine -- imagine trying to cover a state of 35 million people and the geographical range of the state they're pretty limited on what they can do so we see a lot of variability with this. And then part time staff, also 2.4 so these are relatively small organizations and they really Rely on volunteers and people at the local level to do a lot of things.

>> Just one more comment, of the survey responses you see there where it's 26 staff and 2 directors almost all the staff that responded were executive directors so I want to say 24 out of the 26 something like that was the executive directors so they didn't just hand it off to a part timer who was there an hour a week or something like that. The responses came generally from the folks who are at the top. Okay so these are pretty lose figures and when you're presented -- presented [inaudible] don't do too much with this because you know, over here we have the estimates of state affiliate family memberships. What we did is we asked each respondent to estimate kind of the proportions of the ethnic or racial makeup of the folks that they serve and then we took an average of that so it's like an average of a guess. [laughter] So be wary of reading too much into that. But the one thing that we kind of wanted to do was sort of take that average of the guess, the very loose information and compare it to sort of what we know is the breakdown of the arms forced by race and ethnicity and I think what you can see there is probably what at least stuck out to me was a little bit in the way of gaps in terms of potential gaps, in terms of the way say like if you look at the Asian or Pacific Islander, very small proportion of folks sort of by the BIAA fall into that group. Slightly larger population in the military. Another one that stands out is the Hispanic Latino maybe 4.3% again average of a guess, very lose figures. But if you look at who's in the military up over 10% so there are some discrepancies there between you know, who belongs to BIAA, who's getting served there and you know, the makeup of active duty forces. Again I wouldn't read too much into this but it's kind of the casual look that we wanted to take it to see where the discrepancies were, the congruences.

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>> Yeah. What it's suggesting that the data speaks to is something that a number of office have talked about in looking at advocacy organizations for people with disabilities in general including for people with brain injury is that you see a disproportionate participation among whites to the exclusion of other ethnicity groups. And there's a number of theories, number of potential reasons behind that, but you know in terms of access to potential support, you know, this is an issue and we'll talk about that a little bit more later. So one of the questions that we looked at was what is your state affiliate provide and here basically Mark and I just sat down and we tried to think about all the potential things that a state affiliate could provide. We talked to Susan Hansen who's the director of the San Diego Brain Injury Foundation try to get some of her ideas and basically we presented this laundry list to the people doing the survey and asked, you know, what do you actually provide? And they provide quite a bit. So they've got referrals for professionals, 100% of the affiliates do this. Telephone helplines, only 96%. Most have a website, you know there's varying levels of quality of the website in terms of what they provide but must have a website referrals from other families, 96.4%. They get referrals from other brain injuries, persons with brain injuries, 92%, they do -- 89% have support groups. Referrals from the national website 82%, 78.6% do fund raising events so they're doing a number of things, a number of ways to reach out.

>> This really illustrates how the families connect up with the BIAA, how they wind up making those contacts.

>> Yeah.

>> Yeah.

>> And the next one we have more on the focusing on the services so informational referral. They all do that. They all have a website. They all have newsletters. Most have conferences. Most have some kind of written information. Great educational materials. Support groups, information meetings. Multimedia around 50% so they're busy. They're really trying to do a lot of things. And I think a lot of this you will see is in terms of connecting to people. That's one of the key values that the affiliates provide and just providing basic information about brain injury. Because in general, my experience in something that's come through with some of the data we've collected, I think families when they're presented with this type of injury or a brain injury they often don't really know what's going to happen. Your family member may get out of the hospital, may get out of the inpatient unit with not a lot of information with really incomplete information. It may be the case that at the time the inpatient unit tried to share that information but all the different aspects of brain injury, they may not have been emotionally really ready to hear that and really to kind of absorb all of that. So the state affiliates really provide a service of educating people about what does this brain injury mean for your family member? What does it mean for you? And again connecting people to what may be available in the local communities because outside of that they may have no social workers, no [inaudible] there's nobody to do that. Yeah. [inaudible]

>> I'm just trying to understand [inaudible] I'm trying to understand what population with brain injury [inaudible]

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>> Um-hmm.

>>

[ Inaudible ]

>> No they work with everyone. You know, veterans, non-veterans alike.

>> I guess I'm trying to understand what the [inaudible]

>> Well some may just be a general reluctance to use VA services and may have had a negative experience with the VA and then in some cases it may be that the way to get access to VA services may be too long and they need more immediate help. So it could be a variety of reasons but I think the benefit here is that these are Immediately available. Somebody just basically has to call up the helpline or go to the website, go to the office and they immediately will get assistance.

>> Another -- I think another piece of that may be just the comprehensiveness of the services. So I don't think there's any single system where you're going to get everything you need and so it may be just a bit of numbers again. The more systems or services you access, are the greater your chances are of actually getting not all of what you need but more of what you need in terms of help.

>> Yeah.

>> Yeah.

>>

[ Inaudible ]

>> Um-hmm. Um-hmm.

>> Like wise, voc rehab or you know any other -- there's nothing really that precludes you from accessing services through -- I mean it's pretty much open access to BIAA. They're not going to screen anybody out.

>> Yeah. That's absolutely a really good point. There's no basically anybody can go and say I've got a question or I need help and there's no eligibility per se that is note -- no intrusive questions about who you are. You don't have to prove that you have a brain injury. You know, basically anybody can get assistance.

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>> So here we ask -- we provided the BIAA executives, folks who work for BIAA with a list of services and asked them to indicate whether these services were available and adequate to meet the needs in their community. Available but not adequate to meet the need, meaning the demand out stripped the supply or not available at all. I don't know how easy it is to kind of see the numbers from where you're sitting and I'm kind of curious what jumped out to you, if you can. [laughter] One of the benefits of sitting up close. Anything strike you as interesting?

>>

[ Inaudible ]

>> [laughter] We have the columns backwards?

>> Not adequate, adequate slots.

>>

[ Inaudible ]

>> [laughter] Um-hmm.

>>

[ Inaudible ]

>> Right.

>>

[ Inaudible ]

>> To further explore them? Well I want to get you back on kind of the first part there one would be, you know they may need legal services in terms -- with respect to sort of the origin of the source of the injury. I would imagine another piece of this would be that sometimes behaviors post injury might lead people into kind of situations where they could benefit from some representations. So I think both of those are probably kind of important. The other piece -- did we further explore this?

>> Not -- we didn't drill down to below kind of this level of sort of describing what the perceptions of BIAA focus. We haven't gotten any further than that yet.

>> We do kind of collectively talk about from the qualitative open ended point of view what the participants felt what was really lacking. Again not -- not [inaudible] subareas kind of over all sense and we'll be talking about that.

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[ Inaudible ]

>> So yeah nobody says they're completely unavailable. Right.

>>

[ Inaudible ]

>> Right. The ones that are there aren't adequate to meet the needs that folks have. Right.

>>

[ Inaudible ]

>> Um-hmm. Um-hmm.

>>

[ Inaudible ]

>> Well this gets back to my plan about the varying levels of expertise for people working at the affiliates and Mark and I actually -- I don't know if you were there when we did our presentation at the symposium. I had somebody come up to me for like 20 minutes and talk to me about the local BIAA affiliate in her state and how bad it was and what kind of bad advise they gave to this person that she knew and basically the information was wrong and it wasn't helpful and so on. And so I think it -- I think it's probably a bit of reflection that they just don't know. They should know. I think another thing -- yeah. [laughter]

>> I think another thing that we kind of encountered that we got to that's surfaced more later on but was sort of this idea that even when services are available and you alluded to this earlier, service might be available, but it might not necessarily be provided by somebody who's got -- who's well grounded in working with brain injuries so it may be that some cases and I'm hypothesizing here, but folks may have gone to voc rehab and you know worked with somebody who didn't have a clue as to how to work with an injury, brain injury or something like that. That could prompt like a not adequate response as well. I just mentioned that because it was a theme that was repeated later on that the idea that okay we need folks who actually trained and are grounded in working with folks with brain injury.

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[ Inaudible ]

>> Right.

>> Yeah.

>> Right.

>>

[ Inaudible ]

>>

[ Inaudible ]

>> Right. It's great to have access to those services if they're available if you can actually get them and you don't have to wait really long periods of time. Yeah. The wait. Yeah. And you know, this is kind of national in scope as well so you may have folks who qualify for veterans for services but you know it's a 100-mile drive or 150-mile drive in a particularly rural area or something like that just in geographic proximity is going to be a challenge.

>>

[ Inaudible ]

>> There's more of an increased awareness. Yeah.

>> It's overwhelming the VA system trying to meet all their needs as well.

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[ Inaudible ]

>> Yeah. They wouldn't have showed up being diagnosed during that period -- well, I guess if they had been diagnosed previously and they then came to the VA and got a diagnosis then they would show up actually.

>> Yeah. Yeah. Some authors have talked about dissatisfaction with the disability rating system with the VA. Like, for example, for Post-traumatic Stress Disorder, some -- you know, there's been cases where the VA has classified a person as having an underlying personality disorder previous to the military service and basically ruling out a PTSD diagnosis because of that and then when that happens, they don't have access to all the things that we talked about as potential VA services. You know, and when you got -- when the system is so taxed economically, you know, there's probably more of a chance of stuff like that happening because they can't meet all the needs of people coming in. And it gets back to the need for what we're trying to focus on is people are going to have to go to their local communities because just may not be able to get the support from that system that they want.

>>

[ Inaudible ]

>> Well every state has what's called a protection advocacy organization. In California it's called Disability Rights of California.

>> Okay.

>> Yeah. Yeah.

>>

[ Inaudible ]

>> Um-hmm.

>>

[ Inaudible ]

>> Um-hmm.

>>

[ Inaudible ]

>> Um-hmm.

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[ Inaudible ]

>> That's a real problem. No doubt about it and I think some other research I've done is looked at how families are preparing for the future and in many cases they're not having like those kind of discussions about, you know,if they're living with the parents let's say, what's going to happen 20 years down the road when the parents pass away that they're physically unable to do the care is the sibling going to take over those primary care giving duties? You know, so some families are actively having those kind of discussions but in any other case they're -- I think families maybe want to avoid the subject and you have situations then when people get into crisis, you know, they may have to be moved to a nursing home or they may be homeless or there may be, you know, these really terrible consequences because prior planning hasn't occurred and so that's definitely a service of some -- we've got to do a much better job on addressing it.

>>

[ Inaudible ]

>> Yeah.

>>

[ Inaudible ]

>> Oh yeah. [inaudible] regional center. Right.

>> Yeah.

>>

[ Inaudible ]

>> Um-hmm. Just before we move on to the next slide, the one thing we didn't talk about that stuck out to me a little bit was this idea of sexuality training. It's a little bit disconnected maybe from kind of the core of the veterans issues that could still be relevant. You know, we have 70% of the folks saying this isn't available at all and clearly those issues arise. Somebody has a lot of folks with brain injury and what's appropriate, what's not appropriate, all that sort of stuff. Just not out there at all.

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>> All right so I talked about the Family Needs Questionnaire. It's an instrument that's used in both clinical practice but also in research and the idea that you want to try to identify two different areas of family caregiver needs. You know, one is the need important and the second question to what extent has the need been met? So the instrument that needs for health information to be part of community support network to have professional support to have instrumental support to be involved with care and to have emotional support and the instrument is designed to be answered by the family caregiver him or herself. So the way that we adapted this measure and this is kind of unusual so hopefully it's going to make sense when I have to try to describe this. We asked the participants, who again are like executive directors, board of directors, to imagine or think about all the people that you support all the families you support in your state and to answer it from like a collective point of view for all those families that you work with. In terms of how these different things are important. So it's kind of an unusual way to get that information. We did talk to the developer of the [inaudible] questionnaire and we want to do this adaptation to your instrument and he was okay with it. And we got some interesting results from those. And the one thing we saw and this is a potential limitation of the study is that the rated a lot of things as very important and then when we get to the next slide where we ask about to what extent have these needs been met? They have almost, you know, almost close to 100% in many cases the needs have not been met. And so one idea with that is first of all by the nature of what they do in their job they're seeing people in crisis quite often. They're seeing people that call them every day with a need. You know, it's not very common that somebody would call and say I have all my needs met. There's no problems. [laughter] When they're calling, they're saying I need to get a neuropsychologist where's my family member going to live, all these things. So that's kind of the point of view of the orientation. So we did a comparison just to not any kind of fiscal comparison just odd ball type of comparison of how this information compared to my database on adult siblings. This is around 300 siblings, adult siblings around the United States who answered these questions on the Family Needs Questionnaire. What we see from that point of view from any individual family member point of view, how does it compare? So health information again much higher. 99.2% for our staff will compare it to 87% for the civilian example. Can be part of community support network higher, professional support, much higher 94% to 77% to have instrumental support 92% compared to 71%. To be involved with care, 79% compared to 55%. And then emotional support, it was a reasonable --

>> It wasn't part of our scale.

>> Yeah.

>> So that was only asked in your study but we didn't ask it In --

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>> Yeah. We didn't ask that one so we couldn't do that comparison. So the second question looked at to what extent have your needs been met? And so if we look at our sample, the BIAA staff and the board of directors, they have said that basically all these needs had not been met, at all. Health information only 10% is rated as being met. Community support network needs, 6.3%. Professional support, 5.2%. They have said that 0% of instrumental support needs have been met. And instrumental support is having help with kind of the day-to-day needs of care giving. So let's say if you have to -- your family member requires use of a catheter knowing how to actually use that and work with your family member with that. Involving with care 5.6%. Now compared to my sample on siblings dramatically lower. 10% compared to 48% for health information. 6.3 compared to 38% for community support network. Professional support 5.2 to 36.6% and so on. So you know, I think one factor again is their point of view --

>> Right.

>> -- in terms of what they do but I think it's also important just to note that they are basically saying across the board in these major domains and needs that they see in their work that there are major types of unmet needs among families that are impacted by this type of injury and our qualitative findings will speak further to this but you know, that's kind of just an over all sense of this.

>> Good timing. So we had some qualitative questions at the end. We kind of picked one in particular to kind of do an analysis of responses and kind of pick out from the core the key things that came back to us in response to that particular question. And the question was, describe what's been beneficial -- is that the right question? Describe what's been beneficial and what needs improvement with brain injury professional services received by persons with brain injury and their families in your state. So they kind of tried to present it in a balanced way. What's been beneficial and what needs improvement. And kind of the theme -- kind of core theme that came out of this was to the quality of professional services that are provided to the individuals and families with brain injuries. You sort of touched on this earlier or foreshadowed it when we said the professionals that are out there providing services need more grounding in brain injury and kind of working with individuals and families who are experiencing the challenges that are part of brain jury. Another piece of it was --

>> More money.

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>> [laughter] Who doesn't need that. But that was sort of -- kind of rose to the forefront or to the surface as we we're kind of sorting through these open ended responses. There just needs to be more funding so that there'll be a more robust set of services for folks who are dealing with brain injury.

>> Medical care coverage which probably intricately tied up to the first -- intimately tied up to the first two. You want medical -- you want access to coverage. You want access to somebody who's grounded in brain injury and you want to be able to pay for it in some fashion so there's a lot of overlap between these topics and then I think this is probably the professional side of the respondents, you know, speaking to this idea of the efforts to kind of build awareness around brain injury among the general population. There's campaigns that have been conducted are increasing awareness. We've got a, I think, a quote that we felt was particularly impactful from one of the folks who was commenting on his quality of professional services. So they start out saying too long to write but then they write it anyway, which is good. Too long to write, health care too siloed, too bureaucratic, red tape and politics. Families don't know what they don't know, don't know how to play the game and win. Acute care professionals don't have the time or resources to educate or help families. Limited community resources and funding. Family is not on the radar screen only a patient for a limited time and then pushed on to the next level of care. Why do we spend so much money on trauma and acute care and provide little quality of life at the other end of the continuum? Why bother? And I think that comes right back to the heart of what we started at the beginning where we said there's a lot of intensive services right after somebody incurs a brain injury after they get out of the acute phase then there's not a lot left at that point so this person, you know, they've covered a lot of ground in a single statement which is one of the reasons we liked it so much. And they make a lot of really good points.

[ Pause ]

>> [inaudible] my slides?

>> Yeah. Yeah.

>> Not on my slides.

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>> [laughter] Okay. This issue, the second theme, more funding that's needed for community based care. One illustrated quote for this was, "We all know individuals with families need ongoing supports and services some lifelong. These services usually don't exist due to lack of funding." The next point about medical care coverage needs expansion. The Medicaid pays for real costs for a short time. We need -- when treatment stops patients backslide. So this example of the guy who's injured at the Dodgers game is one example of this. Most likely now when he goes home he's going to lose all those gains he made at the Center for Neuro Skills in Bakersfield and you know, it's unfortunate because he has made a lot of gains and so [inaudible] exists for many people across the United States. And then this last point about awareness building campaigns that are effective. The quote was, "Increase awareness of brain injure leading to increased professional education about brain injury and more professionals choose to enter the fields where brain injury Services." So you know, this is one of the key things a lot of the affiliates are doing, you know, really getting the word out about brain injury. One example of this is that a number of programs across the United States where they're working with high school coaches for different sports like soccer and football. Really educate them about how can brain injury happen in your sports? And if you notice certain types of signs, you know, you need to take your athlete out of the field, out of the game of competition and get them some kind of professional treatment and screening. So again, this is something that they're really working on and we see that these kinds of things have really been helpful to increase public knowledge and awareness about brain injury.

>> Okay. We have like two minutes.

>> Yeah. [laughter] You do it. Go ahead.

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>> All right. [laughter] So some future points, future things we talked about. Kind of back to this military connection. You know, most of the really -- almost all of the research that's been done of families of people with brain injuries has been done in the civilian population. There's now a few studies that looked at veterans but there's really not a lot of perspective, not a lot of understanding about how a family needs how long term consequences different for veteran families versus those in the civilian world. So we need more of a focus on that. That led to your point, you know, we need to have more research, more of an understanding about how do veterans in active duty military use civilian resources? So right now it's kind of a guess on how much they actually participate and take part in those services but we need to have a better sense of that. [inaudible] community civilian based services and maybe, you know, how can we further connect people to that source of support? We need to look at partnerships between military and veteran services and civilian services. And in my role with working with the San Diego Brain Injury Foundation, this has really been a struggle where for the last, you know, since I've been on the board, which has been since 2005 this is something we've had a lot of discussions about at our annual planning meetings. We talk about this. And it's really been a struggle to get veterans and to get veteran organizations especially the VA to really partner with us on some of the different things we work on. There seems to be a reluctance for some reason. A variety of reasons potentially for that. So we need to look at how can we more effectively do these kind of partnerships. Because you know to what we talked about before, the VA's overwhelmed with what they have to deal with and they will get benefit from using the civilian resources that are out there. Likewise the civilian world in trying to work with people with brain injuries can benefit from all the great things that the VA is doing and the active military are doing to treat brain injury and other Polytrauma injuries. To this point we just made, we need to do BIAA and state affiliates need to do more outreach and they talk about this on their website. There are some examples where they are trying to have more of that connection but that really needs to be increased and this just overall we need to have more of a symmetry between military and civilian services policy and funding. We are very much siloed, parallel services but they don't really interact with each other and again both sides could really benefit. Mark you have anything to add to that?

>> No. I'm just kind of highlighting maybe that second point. We've had kind of some initial discussions about looking into folks that are eligible for veteran affairs services but active VR, you know state VR kind of looking at investing in that further. That does -- I'm curious about that. We have a very robust system to you, one with deeper pockets than state VR typically and yet you still decide to access state VR and I'm curious about kind of the decision process that goes into that.

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[ Inaudible ]

>> Possible that that's the case. Possible that they're not happy with the services that they've got there. Maybe they don't want to wait. There's a whole variety of reasons, I'm not really sure why. That would be kind of an interesting thing to investigate.

>>

[ Inaudible ]

>> That. Yeah.

>>

[ Inaudible ]

>> Not the case.

>>

[ Inaudible ]

>> Sure. A better understanding of --

>>

[ Inaudible ]

>> Yeah. Yeah.

>>

[ Inaudible ]

>> Yeah. Any other questions? Yeah.

>>

[ Inaudible ]

>> It's challenging -- it's a challenge. You would think that even if you were simply to look at VA services. Right? I think most people might have an appreciation for the benefits of kind of getting folks back into the community. Getting them back working. That's why we're all studying what we're studying but I think the awareness, particularly the [inaudible] is going beyond folks in our little circle, right? Yet there's talk about speeding up the system. There's talk about you know, fire somebody every now and then, a figure head has to go because of the delays in services, things like that. So we have to be aware this exists and yet it's still not where it needs to be in terms of kind of the robustness of the services, the robustness of the funding within the Veteran's stream and that's typically because folks have greater, I think, sympathy or empathy for than, you know, somebody who incurs a brain injury in another fashion. So I'd like to think that awareness alone would do it but I'm kind of a skeptic about that. So I -- it's going to take more, I think, than just increasing -- I mean increasing awareness is not a bad thing but I think it's going to take more than that to kind of get services for folks with brain injuries whether they're veterans or not up to a level that's going to adequate to get them back into the community in numbers, you know, in meaningful numbers really.

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>> I think definitely political advocacy, more of that is needed. The shape of the national organization has been pretty effective on advocating for things like the brain injury TGI act and then different federal research funding like NIH, NIDRR to have more research on brain injury and how it affects people. At the state level that's where the brain injury affiliates, the Brain Injury Association of America affiliates some of them are pretty active in that domain. Other ones need to be more active. I mean California has done some work on that. Some of the limitation of the funding you may not have the funding to hire somebody who's effective in lobbying at the state level for legislation but again some states have been pretty effective with that. That's one of those factors on why there's variability from state to state, why some states you have a lot of things available for individuals with families and others who don't. So hopefully, you know, here in California we do more of that.

>>

[ Inaudible ]

>>

[ Laughter ]

>> I guess I'm trying to get my [inaudible]

>> Yeah. Yeah. [inaudible]

>> [inaudible] Look at it like electronics [inaudible]

>> Um-hmm. Yeah. Absolutely.

>>

[ Inaudible ]

>> Um-hmm. Yeah.

>> [inaudible] to really understand the [inaudible] I don't know. I just wonder [inaudible]

>> I think so. Yeah. Absolutely. Yeah I think people are more receptive to talking about hidden disabilities right? Especially PTSD and traumatic brain injury than they were you know five years ago. Definitely ten years ago. Just over all awareness has definitely increased, you know, so I think the time is really much more prime to do what you're talking about now than it has been in the past.

>> I'm wondering how much of the past [inaudible] no longer productive citizens unable to work.

>> Um-hmm.

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[ Inaudible ]

>> Yeah. I don't know. I think it's something that [inaudible] referred to before. I think there is a belief among you know a lot of people that if you have a brain injury that you vocationally don't have potential to go back to work. That you've lost that capacity and I think that's a perception that has to be fought against.

>>

[ Inaudible ]

>> That's true.

>>

[ Inaudible ]

>> Um-hmm.

>>

[ Inaudible ]

>> Yeah.

>>

[ Inaudible ]

>> Um-hmm.

>> Yeah.

>> Yeah.

>> [inaudible] We need to [inaudible]

>> Sure. Yeah.

>> Yeah, you know and that ties back to one of our qualitative findings about this problem with professional training about brain injury in general. I think that's definitely an issue for real counselors. There's a number of studies that I looked at it's like neuropsychology and teachers and other professional disciplines where they work with people with brain injuries and they get very little to no training on brain injury during their programs and so they come out and they're working with people and they have really no background on how to support people. So we definitely need to do a better job of that too. All right? So thanks for being here.

>> Thank you.

>> All right.

>> Thank you. [applause]

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