The War that Never Ended: Serving the Children and Families of Vietnam Veterans CLINTON AT VA HUD BENEFITS HEARING: Nothing we can do will ever fully repay the Vietnam veterans for all they gave and all they lost, particularly those who have been damaged by Agent Orange. The veterans never stopped taking every step they could for America; now it is our turn to do what we should do. RHONDA KOSTAKIS (WIFE): I understand what he went through was really hell, and it was like, we’re paying for it. I don’t have any normal life, like my kids don’t have a normal life. LOUIS KOSTAKIS (VETERAN): Coming back from Vietnam, it’s been a real mess in their lives. One by one the Agent Orange situation has affected every child with multiple birth defects. MICHAEL LEPSIS (SON): I mean, I jump down my brothers back for anything he does; you know, don’t do this and don’t do that, I mean, I have this attitude, I don’t need help. But I do need help. I just don’t want to admit it. MIKE LEPSIS (VETERAN): This is an unmentionable thing you don’t hear, but the Vietnam War is still going on with a lot of veterans and the war is in their family. NARRATOR: The Vietnam War is a war this country has tried to forget about. Many of the veterans and their families have been forgotten. Yet they are a unique population; that even today have service needs that have not been met. While the veterans themselves may have service- connected disabilities, it is a little known fact that many also have one or more children with disabilities who may not be receiving necessary services. If the children do receive services, professionals may never realize that the parent has a history of military service. Yet the parents’ military background may be a significant factor in the functioning of the family and the physical and emotional development of the children. DENNIS RHOADES: I think one thing you have to keep in mind is that Vietnam veterans have a reluctance to deal with institutions. I think a lot has to do with their reception after their return from the war, and it has kept many families away from the kinds of services that their children need and that they need. NARRATOR: Upon their return from Vietnam, thousands of veterans were suffering from serious undiagnosed ailments. Yet they were consistently under treated, turned away, and misunderstood by the system in place to provide them care. From these negative experiences, frustration and mistrust grew. Over time, veterans became angry and leery of government agencies. Veterans’ families became isolated and disconnected from bureaucratic systems that did not understand or respond to their needs. Accessing services became an overwhelming challenge and is still perceived as “an exercise in futility” for many veteran families. The Maternal Child Health Bureau’s Title V Programs enable states to provide care for children with special needs and chronic illnesses. KAY HERRIN: Well, I definitely think that Title V programs are coming in contact with these families. The problem is, we may not always be aware of that. And we need to know these families and be able to identify them in order to serve them effectively. DENNIS RHOADES: One of the things we have discovered is that the human services system outside the VA does not recognize that there are families going without needed services because they think the VA is going to do it. DON MOSES: I think there is a lot of misconception in regards to what benefits veterans are eligible for. On the one extreme, I think many providers think that if you are a veteran, you’re entitled to all services and family members are also, and on the other end of the spectrum, many of our veterans and family members think that, unless they have a service-connected injury, they’re not entitled to any services. NARRATOR: Families are left on their own to negotiate one system for the veteran, one for the family, and yet another for their children with disabilities. Too often, this leads to no services at all. A lifeline to families began with a class action suit filed by Vietnam veterans against the manufacturers of the herbicide, Agent Orange. This suit was fueled by the strong belief that exposure to Agent Orange resulted in health problems, not only among veterans, but among their children. While many studies show higher rates of birth defects among the children of Vietnam veterans, no direct cause and effect may ever be established. Yet the concern among veterans remains strong that the effects of their exposure have carried over to their children. The class action suit led to a cash settlement in 1989. Community-based programs throughout the country received funding to provide outreach and services to Vietnam veterans and their families. Originally, these were a loose alliance of projects referred to as AOCAP, the Agent Orange Class Assistance Program. When Vietnam veterans and their families began sharing their stories, common themes emerged. MILTON REAVES: I also had a drinking problem associated with whatever problem. I won’t put that totally on Vietnam, but I certainly wasn’t drinking before I went there. And I certainly didn’t have any problems before with the law, before I went there. NARRATOR: Even after twenty years, the trauma of war had a devastating affect on many families. With AOCAP funding and the opportunity for pooling information, these local programs grew into a national network. From sharing experiences, there were lessons learned. Finally, there was an effective model for serving this hard to reach population, family-centered, community- based, service coordination. When this network of programs came into being many families began for the first time to get the help that they needed. DENNIS RHOADES: The funds were chiefly used to create a network of agencies which could provide case management to Vietnam veterans, their families, and their children to help those families access not only the services available through the VA, but also through the broader human services system. NARRATOR: AOCAP had the foresight and flexibility to create a program which was truly responsive to the needs of its target population. They provided a mix of service coordination, counseling, advocacy, information and referral. While serving children with disabilities was its’ priority, the needs of the entire family were addressed under the umbrella of the program. AOCAP’s many programs were up and running for seven years. But the monies which supported them were exhausted in 1996, and now most of the programs have ended or drastically downsized. Nearly 250,000 Vietnam veterans and their families were assisted by these programs, but many have continuing needs, and many others are yet to be served. KAUFFMAN: With the veteran families that we’re working with, very often the issues are much broader than the child with disabilities. It may be the veteran’s particular issues, related to his experiences, most often his experiences. We also tend to see more rare disabilities with this population, with the Vietnam veteran families, than with some of the other families we have been working with. And the other difference really lies in that there are more children. Even though they have disabilities, there are mental health issues that we’re working with also. NARRATOR: The National Information System, or NIS, a computer data base with a toll-free number, was designed to connect families with special needs children to services in their community. NIS records provide a view of the families who called and the services they requested. The children of Vietnam veterans range in age from birth to 30. 10% of the children whose parents called NIS were pre-school age. The veterans are still having families, and children with disabilities. BRYAN SMITH: Vietnam veterans are very diverse, one thing they have in common. They want to know the answer to whether their child’s disability was caused by their service in Vietnam and unfortunately, they may never get that answer. NANCY McMURTREY: Kenneth was diagnosed with Tourette’s syndrome. Our other child, Julie, also has a disorder, seizure disorder, that was detected around the same time that Kenneth’s ADHD was. Is there a relationship between Jerry’s service years and two children, with a disability? BRYAN SMITH: If they have two or three children with multiple disabilities, they’d like to know why those children have disabilities when children born before Vietnam service had no disabilities. NARRATOR: The most common disorders among the children whose families contacted the National Information Service were: spina bifida, cleft palate, learning disabilities, severe skin abnormalities, immune deficiencies, autism, attention deficit disorder and asthma. There was also a significant number of children with rare genetic conditions. LOUIS KOSTAKIS: All of my children were diagnosed with learning disabilities right off the bat. Crissandra had club feet. She had a mitral prolapse in the heart. Tara had spina bifida, double major scoliosis. John was born with curly toes, hyperactivity, learning disability and we could go on and on. NARRATOR: While many Vietnam veterans have children with disabilities, many suffer disabilities themselves. MR. BENNETT: I was drinking a lot and I had a temper that would go off like that. But when I got out I was just so fed up and disgusted with everything I just took what I had and put it in a pile and soaked it in gasoline; that’s my uniform my combat wings, my airborne wings. And I walked away from it. All papers, every scrap of paper, discharge, everything, I torched it. And from that day on I just put it all behind me. I never talked about it. Till just here lately. NARRATOR: Many Vietnam veterans suffer to this day from post traumatic stress disorder, or PTSD. CHARLES FIGLEY Well, post traumatic stress disorder is an anxiety disorder that is a particular label which emerged from research on a wide variety of people, not just Vietnam veterans, but also holocaust survivors, rape victims, survivors of natural, man-made disasters. Those that are experiencing PTSD tend to isolate themselves from others. They’re confused and sometimes they’re angry and frustrated about this. They’re often depressed. The individual has nightmares, they have trouble falling asleep and staying asleep. They often try desperately to get a handle or control over these kinds of problems through drinking or through various kinds of methods that may or may not help. MICHAEL SOLATKA: Like for me, the smell of diesel fuel would bring back memories and I would think about the memories and then I would shut down. I couldn’t think about things ‘cause it was too much. NARRATOR: Mike Lepsis has been in a treatment program to assist him in managing his symptoms of PTSD. MR. LEPSIS: PTSD is good at the time something happens, at the time the trauma happens. But if you relate everything in your life to the trauma, PTSD is taking your life over. What happened is I seen two friends die; the truck exploded and all I seen was flames. I could never talk about it. I ran. And in PTSD, you put little tags on yourself and I tagged myself as a coward. And I could never get over that. I could never figure out why I seen flames. Just held it inside and blocked it out. But they, they went ahead. They have, they have a therapy. I started talking about it. And for the first time since 1969, in 1989, I cried. CHARLES FIGLEY: Now it’s highly treatable. A lot of people assume that if you have PTSD, you’ll have it for the rest of your life. We are completely confident now, those of us at FSU that have been doing the research, that it is treatable. When it comes right down to it, although 15% of Vietnam veterans have active PTSD, 85% do not. NARRATOR: For those that do suffer from PTSD, their problems affect the functioning of the entire family. Dr. Charles Figley coined the term “secondary PTSD” to describe the way children are affected by the symptoms of their parent. CHARLES FIGLEY: Secondary PTSD is working with people or living with people who are in harms way and, as a result, you have to deal with their trauma as well as the trauma of their interacting with you. CRISSANDRA KOSTAKIS: His rages constant rages. It’s like one minute we would go to school and he was nice and I was always afraid to come home because I didn’t know what it was going to be like to come home, you know, if he was going to fly off the bat, you know, and start screaming at us and things like that. CHARLES FIGLEY: So the family often organizes itself based on these kinds of difficulties and symptoms not unlike an alcoholic in the family. In the process of doing that, they often take on the kinds of symptoms being observed in the parent. MICHAEL LEPSIS: But the problem is, I’m like my dad, the way he is before he seeked help. I’m still like that. I haven’t seeked help yet. And there’s like, a role reversal; I’m him and he’s a totally different person. NARRATOR: Dr. Charles Figley describes the clinical picture for children with secondary PTSD. CHARLES FIGLEY: I think it’s not unlike PTSD; as a matter of fact, teachers, counselors, others may think the child experienced a traumatic event because they’ll have similar symptoms: sleeping problems, flashbacks, inability to concentrate, maybe violent outbursts from time to time, crying, regression, attempting as best they can to cope what ever way they can, whether it is physically abusing other kids or whether it’s withdrawing or whatever, bringing attention to themselves because of those kinds of symptoms. ADRIAN STILSON: The world is seen as a dangerous place and children are seen by the vet parent as being ill- prepared for this dangerous existence. Kids in combat veteran families are trained more than they are raised. And this is not done out of meanness; it’s done out of what the vet perceives as a necessity, that the world is not a safe place. CRISSANDRA KOSTAKIS Well, it was rough growing up as a teenager, because you want to do everything that normal teenagers do, and I wasn’t able to. How he raised us, he always wanted us to be there. He didn’t know, like, how to let go and stuff. STILSON Emotional numbing is ...is...is maybe the most universal symptom of combat veterans with or without a diagnosis of PTSD. So the emotionally numb parent is inadvertently giving a message to their kids that affects their self image, their sense of self-worth later on in life. I think this is maybe the most powerful impact. C. KOSTAKIS It was like he didn’t know how to communicate with us, and he has a hard time showing his feelings towards us. NARRATOR: Unfortunately, this emotional numbing of the veteran leaves its imprint on the child. DOLLY LEPSIS: I didn’t know how to show emotions, I kept everything in. If I got mad at somebody I’d keep it in and then maybe two weeks later Id get mad at them for something small but it would all just buildup. STILSON: One of the messages I try to give the kids I work with, which takes a while for them to receive, is that at least during our sessions, it’s okay to express and show feelings. It may be that after the session is over we have to revert back to the system that we live in the family. The work with younger kids is done with play therapy. One, it’s very difficult for anybody to articulate feelings but little kids can’t. They express themselves allegorically through play therapy. NARRATOR: Counseling is only one of a broad range of services that was provided through the coordination of the network. Typical service requests included psychological testing, school resource assistance, facial and other surgeries, assistive equipment, and physical, occupational and speech therapies. But it wasn’t just the children who received services. Chief among the lessons learned by AOCAP professionals is the importance of serving the entire family. TURNER: Some of the most successful aspects of our project have been the family-centered approach that we’ve taken and when I say that, we do assessments on an ecological basis, meaning that we do home visits. We go to where the family is. It is when we become an avenue for that family to achieve services and that we are there to assist that family that we are truly family-centered and we are not just keying in on the child with a disability or the father that was a Vietnam veteran, but we take that family in a totality, in a holistic form, and find out what can best serve the whole family, because if we’re not serving the whole family. then I think we’re missing the boat. TERRY: When we first met Jenny, she basically would answer a question with, “Well, whatever Mom thinks” or “Whatever Dad thinks” and she didn’t have a lot of opinions herself and now, 2 1/2 years later, you don’t have ask what Jenny thinks about something. She'll be happy to tell you. JENNY: I want to get my own apartment, go through school, get a good paying job so I don’t have to depend on my parents. Terry has helped us where we have got the courage to fight for what we want and need. LINDA WOODS: I’ve seen Jenny grow in all this in that. She has started taking charge of her own life with Terry’s help providing information to her. Up until this point, my main concern has been just keeping Jenny alive, seeing that she got the medical care, and I guess in the back of my mind I really didn’t even think past right now, you know, into the future, and then when Terry came along and started telling us all the programs that were out there and available to the disabled, it just opened up a whole new world for me and it opened up a new world for Jenny. NARRATOR: There are many challenges to providing effective service coordination. Whenever possible, families should be provided alternatives within their own community. Too often, families perceive existing services as fragmented, confusing and uninviting. The services they need often come from agencies that have had minimal contact with veteran families. And many of these families live in rural areas where accessing services is difficult. TAMMY: The rural communities are very isolated; there are few, if any, services available within the community. Family members usually have to travel out up to 100, 150 miles to be able to get any real services. When Deborah first contacted our project, she felt very alone in terms of wanting what was best for her son. She had trouble accessing services through the school systems and a multitude of systems. The outreach that we’ve done has let her know there is somebody else who is committed to seeing that her son gets the services he needs and that she’s not alone. DEBBIE GRISSOM: I didn’t know who to go to. I didn’t know what options I had and then after they came in, they told me if I need anything, I could call Tammy and she would tell me who I needed to contact or who I needed to write letters to or how I can get the help that I need. TAMMY: A number of the families that we see through the Vietnam Veterans Family Support Network have been isolated for a long time and haven’t received any services for their children until we came along. DEBBIE: After the group came in then the, I got the teacher that I wanted and I got the physical therapy and that made a big difference in Jeremy’s life. He can walk, just short distances. Before he would have to have furniture and things to hold onto and walk around the room. You can tell a difference in ‘em. TAMMY: Well, with all of our families, we try to make families feel like they’re the ones who are in control. We let them set the rules and determine what their needs are and work with them from there. NARRATOR: Family empowerment was always the underlying principal of AOCAP’s service coordination model. Teaching families to advocate for themselves ensures that they will have access to services now and well into the future. When we first started, Skeet walked humped over and her walking gait was not very wide, and as we progressed, her walking gait is much better because it has exercised the muscles in her legs that she couldn’t exercise herself. So, she spent an hour a week on a horse and it has really helped her. TERRY LATHAM: Well, of course I’m real happy with the advances that Skeet’s made, you know, both physically and socially. Skeet’s father, when we first started working with the family, kept himself a little bit more in the background than he does now. I think he was waiting to see what the project was all about and, of course, what I was all about. MR. BENNETT: Terry come over and we sat, I guess it was an hour or better, we sat there, we just talk, we swapped war stories, so to speak. It wasn’t about my daughter; it wasn’t about military in particular. No one subject in particular, we just sat there and shot the breeze like two old friends, you know. And he’s helped us, me personally with military matters, stuff like that, you know, trying to get some paper work stuff straightened up. Just anything I need advice on or something, it don’t matter what it is, he will try to help me. Well, the program itself is, you know, been working mostly with my daughter. It’s brought her along in her motivational skills. And it’s given her more enthusiasm if nothing else; I mean, just sheer enthusiasm of it all. She gets really involved in it. She likes it. You’ve seen her out there today, riding a horse, she’s walking. She jabbers all the time. And she is smart enough to know right from wrong and they all said she never would. You go down here to some of these other type of program that they have, it’s cold. You’re treated more like livestock going to sale barn. You go in, you take a number, you sit and you wait and they come in there, they point blank at you. They already know what you need better than what you do and you’re the one that‘s trying to find out what you need. TERRY LATHAM: We are in there to assist the family, but ultimately, they are going to have to stand on their own two feet. The family unit, I think, is much stronger and able to do a lot of those things. They were not sure how to do it when we first started working with them. MR. BENNETT: Before Terry come along, it was like a narrow tunnel. But it was a long way down there. You see a little bit of light somewhere at the far end of it, but you knew there was light someplace, you just didn’t know how to get there. You know, you just lost inside that dark tunnel and Terry comes in, he’s got a flashlight. Kind of helps show you around. NARRATOR: AOCAP’s success has demonstrated over the past seven years that there is an alternative model for providing services to veterans. That model, family-centered, community-based, coordinated care should be the standard when it comes to providing effective systems of care. SUZANNE BRONHEIM: I think one of the things, in terms of making a transition from the AOCAP programs to kind of incorporating what they’ve been doing into the community systems of care, is looking at them as sort of demonstrations of some model practices that have really gone on for these families and that those approaches are things that should be expanded for all families who have special needs. NARRATOR: With some flexibility, service strategies can be adapted to meet some of the needs of Vietnam veteran families. Your personal approach can go a long way. CHARLES FIGLEY: If the family clearly communicates that they are a veteran family and they are very observant of issues associated with being a veteran family, in this case, in being a Vietnam War veteran family, then it’s obviously very important to incorporate that knowledge, that culture, if you will, in the context of the intervention, and if that is the case, to learn as much as they feel it is necessary to learn about what it’s like to be a Vietnam War veteran. So, I think its really going with what the family is suggesting is the problem, and what the carrot is, what the payoff for the family is, and then using that as leverage to get to the other issues, but in a very gentle way using their language, their metaphors, their priorities as a family to solve it . LATHAM: I don’t want to say that they’re sensitive, but Vietnam veterans and their families have, they’ve gone through a lot, a lot of different things and I think they can pick out who is genuine and who isn’t and it’s very important to convey to them that you really have an interest in helping them. NARRATOR: For the lucky families who received services from the network, many became empowered to advocate for themselves. But there are many more who have not yet been reached. KAUFFMAN: Our intent was to bridge a lot of the services between the veterans system and the developmental disability system. I do not think that is a task we have succeeded at. NARRATOR: Community partnerships are the key to providing effective services for veterans and their families. This can be achieved through cross-training and increased communication among agencies that serve veterans, families, and children with disabilities. Community agencies can adapt intake forms to include questions regarding a parents’ military history. Once established, the clinician is keyed to ask questions about the entire family. KAY HERRIN: Then you can concentrate on areas about other children in the families, in that family. If there are problems, you can talk about school problems with this particular child and ask about the need for counseling referrals for parents and other members of that family. NARRATOR: Providers within the Department of Veterans Affairs can also bridge some of these gaps by being familiar with community agencies that serve children and families, by asking veterans about their children from previous as well as current marriages, about any children with disabilities, and assisting with any referrals they might need. MOSES: I think it’s very important that we work as closely as we can with community agencies because this is a large enough population of veterans that we are working with, a large number of problems that no one agency can handle by themselves. NARRATOR: When funding ended in 1996, there were some programs across the country which continued to operate. The National Alliance of Veterans Family Service Organizations, or NAVFSO, now provides continuity and coordination for these programs and is available for consultation. Today, they provide services, not only to Vietnam veterans, but to vets from the Persian Gulf War. The programs associated with NAVFSO have been working for the last seven years to rebuild lives. Now they invite the broad mix of agencies that serve veterans, families, and children with disabilities to work together, in partnership, to continue its legacy. As President Clinton said, “Now it’s our turn to do what we should do.” An unprecedented development occurred in 1996. Legislation was enacted which provides Vietnam veterans’ children with spina bifida cash payments, medical care, and vocational training. This is the first time any recognition has been made of the effects of Agent Orange in the offspring of Vietnam veterans. If you think you, your child, or your client might be eligible for these benefits, contact: Roberta Carlin The Spina Bifida Association of America 4590 MacArthur Blvd., N.W., Suite 250 Washington D.C. 20007 ph: 1-202-944-3295 or 1-800-621-3141 E-Mail: spinabifda@aol.com PRESDENT CLINTON: Finally, I am very, very proud that this legislation will protect the families of Vietnam veterans who were exposed to Agent Orange, for too many of these brave soldiers have suffered illness as a result of their service, and now we know that, for many of them, the health effects were also passed along to their children. That is more than anyone can ask in terms of service to a nation. This legislation says that the children of those veterans exposed to Agent Orange who have the birth defect known as Spina Bifida will receive health care and rehabilitation under our disability system. The children of our soldiers should not have to suffer for the sacrifice of their parents. It is now my honor to sign this legislation. And I’d like to ask the members and the families who are here to join us up here on the platform so we can sign the bill. Done. Thank you very much. 1